Just Simply Live

Catch Up

2011-05-09T21:59:00.000-07:00

Wow its been too long... So much has happened that now is slipping my mind. We had family visit us right before Jacks hair cut. Denise and her family were able to stop by on their way home from Cali, and then a few weeks later Kevin and his family came into town for a quick trip. It was so nice to see everyone, even nicer because I got them to myself...hahahaha Steve and Jenn happened to be out of town both times so it was so great to be able to totally have the fam all to my self.... Jack had a follow up ECHO. He had to be sedated which I was not looking forward to but he did amazing. Once he came out of it he was in a really good mood, which was so shocking as we have had very different experiences before. But we were told before the echo that we would be able to get results after Jack woke up. That was exciting as it was a Friday and i totally didn't want to wait a whole weekend and maybe even longer to talk to our doctor about the results. Well we went to get the results and were sort of let down to hear that really that was not going to be the case as our Cardiologist wasn't at Primarys that day so we would have to wait... but then I guess my face was screaming disappointment so much that the girl grabed the on call doctor and had him look at the results. He came in and started by saying that he didn't know Jacks history but by looking at the test everything looked good. Everything was normal there was no sign of pulmonary hypertension.... STOP I stoped hearing everything he was saying at that point.. i was like did he really say there were no signs of Pulmonary Hypertension??? I stopped him and then told him how Jack was there 6months ago to repair a VSD that was causing pulmonary hypertension.... and the doctor was like well in that case his results look great.... I could not believe it. it was gone the whole reason for Jacks surgery back in August was gone... i knew there was a possibility but never thought it would be true. I never knew how much of a weight that was on my shoulder until it wasn't there anymore. We saw the amount of blood that was going through the hole in Jacks heart back in July but still even after seeing that it was still so hard to know if putting Jack through such a major surgery was the right thing... that is until we got the news from the echo. Then the next week i got the call from our actual Cardiologist and the news was the same.... except we were told that we would just need to make another appointment in 6 months.... hopefully the next news we will get will be "see you in a year" : ) We will see, but in the meantime he is doing amazing, Marley is right on his heels and Elle is growing up too fast, telling me before she goes to bed that she has to send a text.... which by the way the closest thing to a cell phone that she has is her leapster.... Today when I picked her up from school a little boy was saying bye Elle and then he ran up and gave her a hug... i told Steve and he said are you trying to kill me... hahaha get used to it now Dad I'm afraid we are just at the very beginning.......

The Cut

2011-04-07T21:28:00.001-07:00

Before..... Jan 01/11

Feb 02/11

March 03/11

The Cut.... this picture really does not due justice to the amount of hair that was on our floor..

And now... April 04/11 - first hair cut since July 07/10

Ready to let it grow again!!!

That Moment

2011-02-24T20:52:00.000-08:00

So a lot has happened since the last post. Elle is with one less tooth. Yes she finally lost that loose tooth, at the beginning of February, and although she felt like her tooth was worth $20, the tooth fairy thought otherwise..... That same night she lost her first tooth, we found out that she now has a second one that is loose...both on the bottom row, right next to each other, so it should be pretty funny when this one comes out because she already has some issues with saying some "s" words, and now add one more open space right next to the space she already has and you are in for a good laugh.... Marley, our almost 9month old got her first 2 teeth at the same time, with more on the way, which makes sleeping hard as she is just not happy. She is now fully mobile, via the army crawl, but man if she wants to get somewhere watch out, she is there fast, and in stealth mode. she is very quiet. She also has developed a love of wanting whatever her brother wants. and when she puts her hand on the toy Jack is playing with you see this angry reaction for just a split second, but then he smiles and gives in. Cute little boy, with a head full of hair.... We haven't cut his hair since July, and to say he has a lot of hair is an understatement, we call him Jack Beiber. Speaking of which.... I have heard many stories of friends who have had these moments when someone is talking to them and for whatever reason this person will say something so off base about their child or children with DS in general it seriously has made people literally speechless. Every time I hear a new story in my head I just come up right away with what I would say, and how I would react if that happened, but at the same time understand how those involved were shocked, and taken back by what happened. It just amazes me sometimes of how much people don't think when they are talking... but I just always felt when my time comes I will be ready. Then came my moment. I went to this church activity that I am now one of the leaders over, and i was talking with one of the other leaders and found that another lady who we would be working with, who wasn't there that night, is another mom in our ward who has, I believe an eight year old daughter with DS (not positive if that is the correct age). We were talking about how I would probably be bringing my kids to the meeting as we have the meetings in the afternoon and my husband would still be at work, and she was like oh no worries.. so and so brings her daughter with her and you know how that is she is so behind that its like she is a 4 or 5yr old..... There it was, I seriously felt my body go numb... I think my face froze in this look and all I could do was stand there. In my head right now I'm yelling at this lady saying are you kidding me???? Climb out of your little shell and join the real world. No I don't know what it's like and I'm sure the lady and her daughter that you are talking about don't know what you are saying either. All I know is that i have a little 2 almost 3yr old son, who loves to get into trouble. Loves to do exactly what you tell him not to do. Loves to bug his older sister so much until she screams and goes crazy, and then he laughs. No he may not be totally walking but he does do it, all the time, all by himself. And though he cannot fully communicate with me he knows every single word I say to him and he understands it perfectly. He is a child just like any other 2 almost 3yr old child, and for you to think any less of him and his abilities because he has DS really shows how much you don't know.... yep that is what I wanted to say, yell, scream what have you, but I froze. And that night I was stuck. I was stuck running through my head what this person had said, and my reaction.... and in doing that I was taken back. Back to the moment when they said "We think your son has signs of Down Syndrome." Those feelings of anger, of sadness of asking why me. That total black cloud, and I was in it for that night and into the next morning... stuck for whatever reason, until finally as I was getting ready in the morning, i hear this sweet voice say "mom" and i look down and there is this perfect little boy, with his baby sisters jean skirt on his head, like a sailors hat. And I laughed and thought who cares. Who really cares... I know my little man, and I know the sky is the limit when it comes to him wanting to do anything, just like it is for his older sister, and younger sister. There is no difference. That is how I see it, and there are truly no words to describe how amazing that view is. I hope to post some more recent photos of the crew next time.. but back to the crazy.

It's Been a While

2011-01-28T22:44:00.000-08:00

So life has pretty much been crazy, and this blog has suffered... Not that I was a regular poster before, it just feels like I haven't been on for a long time. Here is the latest on what has been going on with the fam....
We are anxiously awaiting to hear if Elle will get into any of the Charter Schools that we are in the lottery for... We got a letter from one and we are number 21 on the waiting list... which seems like such a far number but I guess its better than 22 : ) The other schools will do their lottery at the end of February so I guess we will know more then... not that my expectations are high or anything, I'm expecting to be on a lot of waiting lists, hopefully we're a little closer on the other ones but I guess we will just wait and see... Elle has her first loose tooth, it was such a great moment when she realized she had a loose tooth I was talking to my sister and she ran over and was like "Mom I have a loose tooth, I have a loose tooth!!" I looked at it and had her wiggle it and sure enough she did, as soon as I confirmed it she started to do the funniest dance, including her famous "shakies" while saying, "I have a loose tooth I have a loose tooth, I'm getting older" I laughed at the last part because she really does believe that. Her cousin who is a year older than her lost a tooth this past summer and Elle was close to tears saying that she was never going to get older and that she was a baby because she just had baby teeth... I was like slow down child, you're growing up too fast as it is.. but the time has come for this first little bit of verification that our baby in not anywhere near being our baby anymore, she is a beautiful little girl now, who just wants to be bigger.....
Then there is our little man, we are beginning a little trip of our own with him... When Jack turns 3 we will no longer be part of the Early Intervention Program that we have been so lucky to be in. They have provided us with a great PT, OT and Speech Therapist, it has been such a good experience. Now this coming week we will go in and meet with an transition specialist and a representative of the School district. I can't tell you how worried I am about this next part. I feel like I'm totally in the dark, and it just seems crazy to me that we are already here..... I remember our first meeting with this early intervention program, it was right about a week and a half after we had Jack, there was still a lot of emotion right there on the surface. I was in a state of shock not believing that we were having to be a part of this and not wanting to be a part of it and now I don't want to leave.... Hopefully our next journey where ever we may go, will be a good one.
Then there is our sweet Marley, who is such a gift with her mellow personality, she just totally goes with the flow - until she is hungry- but mostly just loves to watch her sister and brother. The way she looks at Jack is something I can't explain. She sees him, just him and she takes it in, and loves it. She is on her way to becoming mobile herself... she gets up on her knees now and is a rocker, so more trouble is on the way.... Hopefully going forward I will be back on sooner but for now this is where we are....

What A Difference A Year Makes

2011-01-06T20:41:00.000-08:00

It's so funny to me to think back a year ago. I had all of these thoughts on what the new year would bring, I was so excited for it and all the new experiences. I was about 5 months pregnant and I think about a week away from finding out that we would be expecting a little Marley. I thought the worst with Jack was over, as we had just made it through his tonsils and adenoids surgery and the 2 week recovery we had from that. How funny.... Life is totally crazy, you think one thing and then reality comes in the door. I feel a lot different about this coming year. I know that I have no idea of what is coming our way, that is one fact for sure. It would be fun to think of what is in store for us, but I think for me this year I will just stop and enjoy the ride. I know I want to show much more appreciation to everyone around me. I know that I totally lacked in that department this past year, due to I think just feeling numb. I feel like a lot of time for me was spent floating by... doing what I needed to to just make sure I got up each morning. But the year ended better than I could have ever expected. The long fall weather helped, and then finally feeling like I was able to enjoy the holidays was also a great feeling, so I'm starting the year with that. Feeling alive, and unfortunately that comes with knowing there was so much gratitude I meant to express to others, so much support that we felt and didn't even know it until now when we can look back. I wish I could express everything I feel to those who were there for us, and maybe one day I will be able to, I sure hope so. But onto this new year, I hope I am ready for it... I will just start by taking one day at a time and loving that and only that, preparing for whatever tomorrow brings but knowing that we will tackle it when the time comes.

6 Months and a Recap

2010-12-14T22:14:00.000-08:00

So I can't believe it but Marley is already 6months old!!! Where has the time gone... She is such a sweet baby, only fussy when she is hungry, but sometimes I feel like she totally makes up for it when she gets that way.... If you heard her you would know you would think the girl was starved, but alas - I like using that word, alas- she is weighing in at a whopping 18lbs 8oz. and I think most of it is in her thighs.. they are so darn chubby and cute, when she got her shots I wondered if the medicine even made it to her blood stream as it had to get through her chubby muscular thighs... I say muscular because I have been kicked a few times by excited little legs... Oh but she is the calm in a world of craziness.. With a brother who has no fear and would like to climb up everywhere, and an older sister who just loves the fact that she can get her brother to do the craziest things we need a Marley... She is sitting up, rolling everywhere and laughing/smiling all the time. Jack is a sweet big brother, he will try to giver her her binkie when she cries or offers his bottle to her when he knows she is hungry it is so wonderful to watch. and Elle is the perfect big sister to both, she loves making trouble but she is such a wonderful helper, and she is growing up so big so fast. Here are some recent picts... enjoy!!

Here is our sweet 6 month old!!

We have seen Santa about 3 times and this was the best picture of Jack and him.... You can see the fear in his eyes... I'm talking about Santa ; )

Elle, wait no this is Marley, no it has to be Elle... nope it's Marley..... Oh my heck she looks just like Elle did...... It's official they have the same parents

This is how we found Jack the other night.... it looks so comfortable...

Elle is afraid of Santa at first but give her about 5-10minutes and she is ready to let him know what she would like this year.... she is always telling me that we can't forget Mrs. Santa, and I can't agree more

She is my picture taker... she loves to strike a pose....

And this about sums up how much Jack wanted to take pictures.. the little stinker... he does smile all the time but these faces make me laugh!!

Little Victories

2010-12-05T20:41:00.001-08:00

So I might have shared this before, but I found it to be something that is so true in my life... The day we were driving home with Jack after his open heart surgery, there was just this huge feeling of relief, we were going home, it was a beautiful day, and our little boy was so happy in the back seat... I took this deep breath in and just let it out.... and Steve said yeah this is one of those little victories. and I was like little are you kidding me?!?! but then he followed it up by saying how its just one of many victories to come, because we all know there will be more trials and there can't be just one victory, there has to be many little ones along the way..... now the success of Jacks surgery is at the top for sure of our victory list and it was not little at all, but its there in our book of little victories, and with that being said we had another little victory this past week, and I'm sure we've actually had many since the surgery, but this one was a really good one... Lately I've just been lost in knowing what I can do to get Jack to eat "big people food".... he is stuck on that stage 3 baby food and his milk and when I say stage 3, I'm just talking about like the sweet potatoes, not the turkey and veggie dinner ; ) He just will not go for the bigger chunks and anything new that I try to put in his mouth he just lets it sit on his tongue or he uses his tongue to shoot it right back out of his mouth... even the fast dissolving stuff, he just will not take it... and I have my moments when I am determined to do this - to get him off the baby stuff and on to other things but then I always give in when after many attempts it doesn't happen... We finally got an OT coming in to help us with this, and after our first eval. I just felt like "what have I done, I have totally let him fall behind." In my mind I was just waiting for him to make the decision, something I sort of learned with Elle was that she would do it when she was ready... like potty training, crawling etc, etc etc... So that has been my mindset with Jack, but I think about it now and I'm like is this something that has now put him way far behind... and I know I should have requested to get an OT in and working with us sooner, but again pretty much since April we have been on surgery mode and new baby mode and didn't really focus much on Jacks eating habits. The good part is that he is very healthy, he is growing like a weed and he is amazing when it comes to his weight and height, so its not like this was something that was hurting him nutrition wise.... so now to make my point HE ATE MACARONI AND CHEESE....(clapping and cheering) it was blended up mind you but he ate it, after a few/many tries and getting him distracted we did it and he ate it and by the end of the meal I didn't even have to distract him. It felt so good, it may not seem that big to many, but it was one of the top of the list little victories for us..... we will have to see what happens next, but for now we'll take what we can from this one and try something else....

November

2010-11-29T21:30:00.000-08:00

So we are to the end of November, and I have to say I have absolutely loved November. Which is a total shock to me.... I always had this little thing against November, it always seemed like the month where everything looked dead and the world was just waiting for the snow to cover it all up. But this has been a beautiful month. If every November could be like this one was, it would be my favorite month. The leaves stayed longer this year and the color stayed almost the whole month. We had the crisp feel of autumn, with out the bone chilling cold of winter. We did get some snow, but it was mixed with rain and then followed up by a nice sunny fall day. And finally in these last few days we got that first big snow, the one that tells you its time for winter, but it was time, and now it has been a perfect transition into winter. I was dreading the snow that I thought was coming at the end of October, I was not ready for it and the thought made me start to get a little depressed, so when November swooped in and saved the day by providing a perfect mix of weather, that depression slipped away and now I am ready for the snow.... I loved November so much and just thinking of this past month, although it was crazy busy, it was one that I will remember, it was the perfect way to say goodbye to fall and hello to winter...

The last Kick

2010-11-28T20:56:00.001-08:00

I have to admit, I started my last post with not really a true thought that BYU could win this year... I always want to cheer for them but lets be honest, this has not been their year... so I went in with no high expectations, but was totally shocked when the cougars came out looking soooo dang good... It was a great game, up until the last play that allowed the U to win, but I can't say anything bad about it I loved watching it and was so excited for that last kick... Better luck next year!!

Ra Ra Ra Ra Ra Goooooooo COUGARS!!

2010-11-27T13:00:00.001-08:00

Thankful

2010-11-24T22:36:00.000-08:00

I couldn't even begin to share the many things I am grateful for this Thanksgiving. I am full - that is the best way to put it.... I look back on all that our family has been through and I just can't express how thankful I am. There have been many times that I have caught myself in that moment, when you are asking why, why me, why us? and I have come to the point of knowing that finding out that answer would be useless because the reason for having that question shapes me into the person I am, into the family we are. And I love it. It is so hard and it has made me so tired at times, and question so many things, but once you get out of the dark you can take it in and see where you are and what you have overcome..... I hope you all have a wonderful Thanksgiving!

The 6 Month Eval

2010-11-16T21:19:00.000-08:00

So with Jacks early intervention program they do an evaluation every 6 months. They are appointments I don't really look forward to because I always seem to feel so bad after. I look at my little man and I think WOW he is doing so much. He has overcome so many different obstacles and is still moving forward making huge strides.... but then I have to answer the questions they ask about him. Is he doing this or that, does he know this, can he do that etc. etc etc... and i have to answer no, um yea he is working on them, he is not there yet, etc, etc, etc.... I feel as if I have let him down. I worry that I'm not doing enough. I do get my moments to say Yes he did that and trust me if I could yell YES, without freaking out everyone around I would, but those moments are always overshadowed by the other answers I have to give.... I can't help it this is how I feel, every time.. its not the people who come and do the questioning at all, its just the fact that these questions make me feel like here we go, here is the first round of judgement on my son. No he cannot say Jack yet but he can say light, mama, dada, Elle, Mar and a bunch of other words, and he knows every single word I say to him. He is so smart and he is such a superhero to me that I hate to have to have some test say otherwise..... It's just a stage I'm at right now, I usually always have this low point after the meetings and then brush it off and move forward, but I have to say it's hard, thats just what it is... its hard. So there - got that out, I'm ready to move on... on to bigger and better things, things that a piece of paper can't hold back. I'm off to go and watch what amazing thing Jack will do today...

Rewind...

2010-11-13T21:07:00.001-08:00

So I have totally gone M.I.A. on this blog due to a crazy life... but I wanted to go back and talk a little about Halloween... We had a really great Halloween, even though when we went trick-or -treating we were soaked to the bone when we got home, we still had a great time... Elle finally had decided that she wanted to be Jasmine, and we found a pretty good costume at a craft show so we went for it..... the problem was that on Friday, the 29th- she wore her costume almost all day, so she was a little sick of it by the next day, or I guess mainly sick of the wig, because Jasmine has black hair as all of you know ; ) So in my pictures I only have a few of her with her wig, and it was not on really good at all, I could kick myself for not taking pictures of her before she went to school the day before, but I kept saying its ok I will get some tomorrow when she goes out for trick-or-treating.... another side note is that I didn't fully discover that Jack and Elles costumes went together until I was taking pictures of them... you see we decided that Jack would be a tiger because I put his costume on him and he loved it and looked so cute in it, and then when we were taking pictures I was like wait a second... Jasmine had a pet tiger, so there you go.. Elle was Jasmine and Jack was her pet tiger Raja.. it worked out great... Marley I guess could have been the Genie but we settled on a cute little flower... so here we go.. the pictures of Halloween

Jack really LOVED his costume, which totally surprised me... I thought for sure he would want to take it off right away, but it was the very opposite. He loved having his hands in the little straps and he loved the hat... it was crazy but worked out perfectly...

We Have Take Off.....

2010-11-01T21:10:00.000-07:00

Today Jack took his first steps on his own, and my heart went CrAzY!!! It was a fantastic moment... I was just folding some laundry in our room and he was out in our landing area wrestling with his older sis, when he got the urge to stand up on his own. Now this little move is nothing new to us, he will always just get on this kick when he loves to just stand up and show everyone that he can balance - never for his PT Mark - but always at some point during the day he will show off.... Then there was tonight... He stood up, and every time he does I start saying "take a step, take a step", and then he did.. with his little right leg he took a step, Elle and I went crazy, and Jacks eyes lit up, then he started doing this little pivot move... just moving around in a circle with this one leg moving and then he went down on his bum. He stood up again and then went for it, 1,2 steps each leg moving forward holding on to nothing...... You don't understand what this means to me. Its something so little but so HUGE for us. The best part is, now he will be trying every day to take those steps... He did it, he understands its something big - because his favorite, loudest cheerleader Elle was right there screaming for him - and that is what makes our little man go... That cheering that joy. You see it in his eyes every time....

I'm a slacker

2010-10-27T09:29:00.000-07:00

So I was going to post yesterday about how I have been in this slump ever since I saw a little snowflake on the weather part of the news last week, but I read through what I wrote and I decided to delete and come back for another try some other time..... We had rain yesterday with the occasional snow flake, but nothing to really say snow storm...... that is until this morning when there was at least 5 inches of snow in our driveway... its here and Im usually sooo excited about it but with winter lasting through May and me being pregnant during all of it, it was hard and I wanted to put it off a little bit longer, so the jokes on me, but oh well what can you do??
I made it posting most everyday for 21 days, and 21 is something when it comes to DS, so it felt good to make it there..... so for now I will go back to my normal posting, and to start it off I have to say I REALLY need to put on my momma nurse hat... you see I have been pretty good at knowing what my child has if they are sick and what I can do to get it to go away, without having to go to the doctors.... sometimes it would frustrate me when I would load up the car and go in because all they had to tell me was that there was nothing they could do just give them some Motrin, and bla bla bla... so I decided that I would make sure it was something that I really needed to go to the doctors for before I made the call... and I did really good at it last winter. The kids stayed pretty healthy for the most part and with the exception of Jacks case of pneumonia in May I was right on with what the kids had.... so to my surprise a few weeks ago we took Elle in after she had been coughing for a while and found that she had a mild case of pneumonia, which sent me in freak mode due to having little Marley around and our little man who just had major surgery not so long ago... but we an antibiotic for Elle and besides a little cough that Marley has every now and then - nothing like elles - I thought we made it through safe... then Jack wakes up at 11:30 last night not being able to breath.. he was heaving in and out and really having a hard time... we were putting him into the car and he finally coughed which helped for a second but then started his wheezing and just fighting to get air... so to the ER we went.. I think I am very hypersensitive with him right now, so anything will get me to take him in, Elle on the other hand I will wait on, but Jack and probably Marley just because she is still so little we will go in right away... so as we drove down he coughed again and this time it was obvious to me that it was going to be croup. which is something that if I had him outside for a bit and then had his humidifier on we could have made it through the night, but again, at this point with him, I am not willing to even try to make it through the night.. i don't really care how much it costs to visit the ER this is my little man... so we went in.... first thing we found out was that his lungs were clear - HUGE relief- as to me having whatever virus he has in his lungs is so much more worse than an upper respiratory issue so that was great to hear, but then it was confirmed that he had croup- no huge issue we got the steroid dose to help start opening his airway right away and we came home.... He is doing great today and we have one more dose of the steroid to give him tonight.... I just need to keep him from Marley as it is contagious and I really don't want her to get it... so here we go the beginning of the wonderful season of sickness.... bring it on

20 & 21

2010-10-21T12:23:00.000-07:00

#20
So a while ago I saw a little clip of a show about seeing what people would do in certain situations. The show itself would set up an incident and see how people react to it. In this particular case, there was a young man with Down Syndrome bagging groceries - the young man was a hired actor who did have DS, and they also hired a lady who while she is having her groceries rang up starts to say some really hurtful things about the young man. She uses the "R" word and talks about how slow he is going. The first person she was saying these things to just nodded her head and said nothing back. This upset me as you would probably guess.... the second lady went off.... she said things like how can you say something like that. If that was my child I would be slapping you...etc. etc. etc... It was great to see that reaction. But the one that got me was where the actor lady started doing her thing and a guy who wasn't in line, just happened to be walking by and overheard what she was saying came up and put his arm around the young man bagging and told the lady off.... The TV show interviewed each person after and they asked them why they reacted that way... the first lady used the excuse that she just didn't want to confront the woman who was saying the hurtful things... The second lady was like heck yea I said something, I would never want anyone treating my child that way, so I'm not going to let it happen to anyone else... and the 3rd guy said he has a sister with DS and just seeing someone say things like that made him jump to stand up for this young man. I have to say it was VERY hard to watch... although my heart jumped when people were standing up for this boy, it also sank when someone didn't. The thought of someone being hurtful towards Jack just starts my blood running and gets me into this attack mode, and that is just the thought.... But what also helps is knowing that he has 2 body guards that will be by his side at times I am not... they happen to be his biggest cheerleaders too. Even though one can't talk yet she still makes these faces and her legs start kicking when her brother is near... Elle is amazing when she is cheering for her brother, and he soaks it up. Jack will do anything if Elle is cheering him on. I love that that foundation is laid and it gives me comfort about the years to come.... And Jack and Marley I think will be very protective of each other. Jack has these special moments with her and she just lights up when he leans in to be cheek to cheek with her. The world can be very mean sometimes, but I know that I have 3 superheros watching over each other and our family...

#21
Jack is a little stinker : ) He loves to make trouble, start trouble, and be IN trouble day in and day out. He knows what he should and should not do, but he also knows what he can do to get out of it... smile and give me those "Bambi Eyes".... oh he is such a stinker!!

Changes

2010-10-19T20:39:00.000-07:00

So I've said it before - probably a million times - but I can't say all the ways that Jack has changed my life. When I stop to think of it, it really is crazy to me. I grew up with a sister with special needs so it has been somewhat amazing to me how having Jack still could change me even more..... He has changed our whole family... but here's the kicker.....
# 19
I love the way Jack changes everyone around him. Anytime we go out, someone is changed for the better by this little man. A little man who will smile and say "hi" however many times he has to until the lady by the deli counter says hi back - boom, changed- the lady who has checked us out at Walmart before, who just told me today that she went home last time we went through her line and told her husband about our little man.... how cute he is and what a fun personality he has - another one - changed. I can't even count how many people he has changed in his short 2yr old life - even more I cant even imagine the number he will change in the years to come...

16, 17, 18

2010-10-18T12:08:00.001-07:00

Wow I'm a slacker.... when I don't have to work on a weekend, I really do all I can to not get on the computer, so I guess that is sort of my excuse : ) but no, October for some reason is like a blur to me so far... I feel like I have had one thing after another that has made me stressed or worry over so that is where all my focus has gone, and then by the time I sit down to write about some of it, I'm so tired I can't.... what a crazy life!!

#16
I love how I have to put Jack to bed about 20 times a night -if not more-because he will just get out of his bed now that he has a new found freedom- no crib bars : ) weird that I love it, but the reason is because when I peek in to see what he is up to I almost cry because I see that my little boy is just that - a little boy. I always knew that Jack was not Down Syndrome, but just that he had Down Syndrome... yet when he first came into our lives I just pictured how hard life was going to be and I worried about how he wasn't going to be able to do this or that.... but in reality he is this little boy who likes to get out of bed and get his cars and play with them. He loves to read books and loves to get out of bed to get one to look at. And he feels the need to throw his bottle out of bed just so he has an excuse to get out of bed and go grab it. I love having to put him back in bed because every time I do its Jacks way of telling me that he is a little boy first and foremost, who just happens to have something extra...

#17
Jack had the cutest legs... and when he is pant-less and standing up playing with something on the couch or ottoman, I just want to go and eat those legs... they are so stinking cute... and his little feet are just the same... it's cute to look at his toes, a little fact about kids with DS is that there is sometimes a bigger space in between their big toe and the rest... its nothing huge but it is something noticeable, and Jack has it. When he walks around you can see how he is using his toes so much to maintain balance and they are just too cute!!

#18
I love the fact that now instead of crawling everywhere, if Jack can grab your hand he wants you to walk with him everywhere... we went from his non-stop rolling... to crawling like a mad man, and now walking with him.... I love to just walk with him, holding onto my one hand... it's like we are just going for a little stroll through the house, but its just me and him hand in hand....

#15

2010-10-15T21:11:00.001-07:00

#15
I love how Jack will use some of the signs we have taught him now and then... It is so cute to watch him do them, and he always uses them for what they are meant for... He knows eat, more, milk, sleep, and all done... I need to keep introducing more as he is so willing to learn new ones and he is really good at mimicking what we do...

Crazy Beautiful

2010-10-14T21:51:00.000-07:00

I'm always amazed at how Jack looks so much like me when I was a baby, yet at the same time he looks so much like 1000s of others with that extra something... It's crazy yet beautiful all at the same time.....

#14
I LOVE his eyes, and if there was one feature that he always gets complimented on - its his eyes.... They are so blue, and so big, and they tell their own little story. They are always looking for something new to figure out, to learn, and explore. And they connect him to his sisters. All 3 have blue eyes, maybe different shades, but all that same beautiful color..... and one cannot leave out that TwInKle.!.!.!

Here are just some random pictures and then the last 2 are from Marleys blessing...

Big/Little Bed

2010-10-13T09:19:00.000-07:00

So when Elle was moved out of the crib... she was ready, there were no doubts about it, that girl wanted a big bed to be a princess in, she reminded me of Princess and the Pea... just the part where it was this little girl in this HUGE bed... but she loved it and was so excited. We got her an actual Twin size bed, she skipped right past the toddler bed. Now with Jack we got him his toddler bed back in May I think, and he slept in in for a while, but as we were getting ready for his surgery we moved him back into the crib... it was just safer, and then after his surgery he went back in the crib for safety reasons, but now I was ready for him to be in his own room... I have been wanting to get Marley into the crib because she is more than ready, and Jack is more than ready to be out of it.... their daddy on the other hand was not, but I told him as soon as we hit that point where the bone should be healed up, Jack is moving out. And we hit it, so I moved him out... and yes the first few nights of trying to get him to lay down took many, many attempts but once he was asleep he slept wonderful, hardly ever waking up... and because he can't open doors yet, even though he is trying all the time, in the mornings he loves to just go through his room pulling out his toys... its like he knows this new place is all about him, and though he still loves to venture into Elles room, he loves going through his own room and pulling out the toys we have in there... Last night we hit a little bump as he rolled out of bed, it was more a bump for dad as Jack didn't even wake up and lets be serious the drop is about the same as if you fell off the last step of your stairs onto the floor.... but dad was a little dramatic about it, so once i took care of him we put Jack back into his bed laying in the direction he should be - which was the reason he fell out in the first place - and everything was fine... The only thing I noticed was how big my little boy is now... Even in his "big boy" bed he is looking way too big... it makes me a little sad, which leads me to

#13 I love how I have been spoiled with baby lovin' for more than your normal time frame with Jack... You see because of the magic in the extra chromosome, Jack stayed in that baby stage longer than most kids do... I loved the extra snuggles, the wonderful cuddles and the extra dose of Eskimo kisses... I love that stage - the baby stage - and it just goes by way too fast... I feel that Elle was out of it in a flash and I'm already losing my Marley, so it was nice to have it just a bit longer with my little man....

11 & 12

2010-10-12T21:01:00.000-07:00

#11
I love how Jack now has a little toddler laugh... its no longer a little sweet giggle it is a big boy toddler laugh, that makes me laugh even more when I hear it....

#12
I love how Jack loves to take baths, and after he now looks forward to me wrapping him up in a towel and sing my little burrito song that I sang for Elle, now him and soon Marley... he loves it and can't wait to hear it - which makes me want to pat myself on the back and say good job mom : )

They Just Get It...

2010-10-10T22:31:00.000-07:00

So before I came over to the blog side tonight, i was looking at a video about how this year there have been a number of schools across the country that have voted for a student with special needs - in many cases, Downs Syndrome- as their Homecoming Queen or King. I cried when I watched it, how could you not. And its not just because of Jack, its because these young adults/teenagers are getting it, and you don't know how happy that makes me feel. Growing up with a sister who had special needs gave me some experiences that broke my heart, people were mean, it wasn't right. And when we first had Jack when I was in my anger stage I didn't think it was fair that I was going to have to go through that all again.... Erika told me about the last episode of the TV show Glee, and I went online and watched it, and what the character Sue says is completely true, in the show she has an older sister who has downs syndrome and she said that when they were young she looked at her older sister and she was perfect, but then as they grew older she watched the world be cruel to her - and its true - that is how I felt with my sister... there was a lot of good I saw, but there was the cruel part as well, and as a sister it ripped at my gut, it hurt me so much, and now with Jack, as a parent I'm in a different spot, and the thought of someone ever being cruel to him absolutely kills me, there are no words for it... but I feel hope when I see these news clips of teenagers voting for these wonderful, perfect kids, or letting them run for a touchdown in a Varsity football game... I love it and all that runs through my head is that they get it, they are seeing what is really important in life... the just get it...

#10 I love how Jack has made me a different person. I love how just by his presence in our family he is helping Elle and Marley be better people, and not only that but he is helping his cousins, aunts, uncles, grandparents, etc etc etc..... We are a more compassionate family. We are more loving, towards others and towards each other. He has melted us together and that gives me strength..

One Word: Beautiful

2010-10-09T22:18:00.000-07:00

So today - in a word - was beautiful.... The weather wasn't the best, it did have a fall crisp-ness to it which I love, but there were a bunch of grey clouds for the majority of it.., and the morning was crazy busy dealing with work and trying to get everything together for the blessing, and finally after all the work came the joy of just being with my family for the blessing of our sweet Marley.... She looked beautiful and both Elle and Jack were so good with mom wanting to take a million pictures. Marley didn't fuss one bit, she is such a content baby... I will post pictures soon, Im a little tired right now, but when I look back on the day I take a deep breath and it just feels right....

#9 Another bit of beauty in my life:

Busy Busy Busy

2010-10-08T22:13:00.000-07:00

We are blessing Marley tomorrow so I have been running crazy trying to get everything we need together for the big day... well its almost midnight and I'm not totally ready but oh well it will all work out : )
#8 I love what a great problem solver Jack is.... when he is bound and determined to do something he will find a way to do it.... its such a great thing to watch and you just see how smart he is.... LOVE IT!!!

It's My Weekness

2010-10-07T21:56:00.000-07:00

So the time has come to start my deep dark nightly weakness - Blog Hopping... i love it, what can I say, and if I had enough time I would love to do it all day - there you go I said its out.... I just love reading the happenings in others lives... their ups, downs and especially the stories that they are just passionate about. I love looking at the pictures, i feel myself smiling when I see them, its just a really good thing. It helped me a lot when we first were going through the roller coaster of emotions with Jack and his little extra surprise he brought with him. It was so nice to read what others were going through at the time, both families living with a sweet little one with a little extra, and families just living life.... none of them were at the point in life where we found ourselves, there were all different blogs about different stages of life, but it was comforting. I didn't have to talk, all I had to do was read, and feel these feelings that people were having, and know that life really is good. some nights I just can't get enough, it really is a great thing to me, its a wonderful novel and the best part is that you can't make it up because the stories are true!!! These are things that really happened or these are thoughts that others have, sometimes it gives validation that I'm not as crazy as I thought I was : )
Thank you Erika for pushing me to start this..... you got me moving down a path that really helped me out in more ways than I ever thought it would....

#7 I love to watch how much Jack LOVES his sisters. He was giving Elle so many of the cutest hugs - if hugs can be cute- today, as well as giving me some of his famous kisses. And when he sees Marley, and gets down right beside her, he is actulally really gentle, he then becomes all boy and changes that really quick, but there is this moment. Watching it gives me such a warm feeling, like when you're a little cold and you grab a really warm blanket and snuggle, thats the feeling I get when I watch that boy with his sisters, he loves them to pieces and they love him right back - it fills my heart

On a side note I need to put out there how absolutely proud I am of Elle. She is working so hard to start reading and she has now brought home her 1st 3 reading books. She has to pass off one before getting the next. And no they are not anything big... the 1st book contained 4 pages with the words Pam Hat Bag and Sam on each one... but hey its a start and she is doing awesome!!

This Has To Be Fast

2010-10-06T21:38:00.000-07:00

So I am exhausted!! I need to go sleep... I am so mad that i didn't post anything yesterday but my job got in the way... usually at night once I am done working I will start my blog hopping and make a little post, but I didn't get to that last night due to work, which led to a very late night and an early morning with little ones make for a very tired me... so here we go.. to make up for the one post I missed
#5
I love the looks I get from Jack when I look at him through the rear view mirror, it makes any kind of bad construction, tons of people everywhere bad driving worth it

#6 I love how Jack will Jam to music. I have a very music loving little guy, and he has perfect rhythm.... The boy loves LA Baby(by the Jonas Brothers, I hate to even put that) - Dave Matthews - and Hannah Montana... We watch Disney around here and he has an older sister just to explain a little on his music choices ; ) But really if anything with a good beat comes on the boy starts movin'

6 Weeks Post Op

2010-10-04T15:17:00.000-07:00

So I can't believe it but it has been 6weeks since Jacks surgery.... That time in our lives was sooo stressful I can't even put it into words, but just thinking about it now - how its over - makes me feel so relieved. It went better than I could have ever imagined. There is power in numbers, and I know there was no way our Heavenly Father could pass up all the prayers and thoughts that were sent his way on Jacks behalf. We are blessed to have family and friends who care so much about our boy. There have been times when worries arise about what we would do about Jack if something were to happen to us and there is no doubt in my mind that he would be taken in, cared for, and loved, but I think everyone would have to get past his 2 sisters first : )
The doctors say that it takes 6 - 8 weeks for his bone to fully heal, well we made it to week 6, but I have to say I will still be watching him like a hawk until week 8,9,10..... pretty much until forever I guess... But anyhow, I still can't believe it has been 6 weeks since we went in and I have to admit that I am more than happy it is over. We are slowly getting back to normal life, maybe some day we will get there, but for now I will just enjoy the ride...

#4 I love how Jack gets so much joy out of driving Elle crazy. One example of this is that he will wait until she is trying to tell me a story and right as she starts to say something he yells, so she stops and waits until he is done and then tries again, at which point Jack will scream again, this time followed by the biggest smile and giggle you have ever heard, as his sister starts to whine and scream about how I have to make Jack stop!?!? The joys of motherhood : )

1 Day at a Time

2010-10-03T19:05:00.000-07:00

I decided along with the posting every day I wanted to say 1 thing I love about Jack.
Because there are like a billion, this will help when I am stumped on something to post about... So going back
1. I love the MANY faces of Jack - they make me laugh at least 100 times a day *I sort of posted this already but I hadn't made it my "official" statement for that day ; )
2. I love Jacks determination, it give me more strength to "keep moving forward"
And for today:
3. I love how he is alllll boy - he is a trouble maker, he loves to discover new things and he is determined to do exactly what you don't want him to do....
One last thought:
As I watch football it makes me both happy and sad.. happy that the football league is taking such a visual part in recognizing Breast Cancer Awareness month, but sad at the same time thinking about how it is also National Downs Syndrome awareness month and yet there is no yellow and blue ribbon anywhere to signal the importance of that as well...

2 for 2

2010-10-02T22:17:00.000-07:00

So here is my next one.... So far so good... Today was a really nice day. We took a drive up the canyon to see all the fall colors and then stopped in Park City to do a little shopping, and then on our way home stopped at a park that we have always wanted to go to... every time we would come home from Primarys we would drive the "long" way, taking the back roads home and we would always see this park, it has great big spruce trees, a ton of grassy areas and a really great park area. So today we went. Elle had tons of fun on the play ground, and Jack was taking off crawling through the grass faster than I could believe. The funny part was while he crawled he would try his best to not let his feet touch the grass... It was so funny to watch him do it, I'm not sure how he could go so fast doing it but he did... and our Marley was just content to lay on the blanket looking at the sky. The temp was perfect and the day as a whole was mostly mellow, which is a huge surprise considering your dealing with really young kids, but they all did soooo good. We were able to look around at the stores for a few hours and the car ride was quiet a lot of the time.... Jack crashed when we got home, Marley became full on awake and Elle got to stay at Grandmas ... I guess thats just how it goes sometimes : )

Give it a Try

2010-10-01T21:05:00.000-07:00

So I'm going to try out this little idea I came across.... In honor of October being Downs Syndrome Awareness month, I am taking the challenge to blog 1 time every day...

This should be a bit tricky as I don't really have that many interesting things to blog about, and not a ton of extra time.... but I'm gonna give it a try

So.... to begin, here are SOME of the many faces of our little man....

1 post down, 30 more to go......

The Walk and Life

2010-09-28T23:47:00.000-07:00

So it's almost 1am and I finally have a minute to post something.... Life has been non-stop around here and I find myself saying on more than one occasion during the day, when will I get a second to breath..... Someday I will get a good routine down and then I can sit back and take a deep breath, but for now this is what I got : )

This past weekend we decided to go and participate in the Buddy Walk, which is an event that raises money and awareness for the National Down Syndrome Foundation. We decided that we were going to go the week before so our money raising consisted of a donation from us, but we hope to participate in more things like this in the future and by then we will have everything together..... I didn't know what to expect so instead of getting a huge team together, we wanted to do this one on our own... It was funny because as the day approached I got really nervous. I have never been to anything like this so I had no idea of what to expect, and with it being my idea if something crazy happened it would fall on my shoulders.... so we took a deep breath and went. It was a really nice day and once we got there, the kids were having a blast. There were little carnival games set up so they could go around to the different booths, do a little game an get a prize. We first did the fishing booth which Jack and Elle did. then Elle got her face painted and for whatever reason asked to have a dolphin?? interesting choice... but from there it was about following Elle around to events she wanted to do and if it was something Jack might want to do we would get him out of the stroller... I told Steve we should get some shirts made just for our "Team" and because of connections he has we had a bunch of shirts for the event, our Team name of course was Team Jack Attack It was a really fun time, just being with each other, and then when we did the walk it was really fun just to do in honor of having such an amazing little man. October is National Down Syndrome Awareness month so I am excited for that. Here are some picts of the day...

Here we are doing the cupcake walk : )

Elle getting the dolphin?!?

Jack was actually jammin' to the music right here.. and you can't really see it but Chick-Fil-a was there so their Cows that hold the the Eat more Chicken signs were walking around -you can sort of see one in the upper right hand corner -... Jack didn't mind them but an older sister would freak when they were within 10 feet of us, although she did give them a high 5 when we passed them during the walk ; )

This was the beginning, I was totally at the wrong angle as you cant even see Jack, you just see Marleys car seat : (

Finally the whole group in our awesome shirts - we really didn't have one Marleys size so she got wrapped up in one...

3 Months - Are you Kidding!!!

2010-09-13T18:59:00.000-07:00

So I meant to post this last week, but time and a little girls party got in my way.... Our Marley turned 3 months on the 9th, and I can't believe that that much time has already flown by... It seems like we have been going from one thing to another not even having time to breath. But WoW what can I say she has already changed so much. Its funny how you think newborn babies are just so beautiful but then they start to grow and it just gets better from there. I must say Marley Mar is such a sweet little one, she keeps me company late at night and she just loves her brother, sister and daddy... she has a smile that will make you feel warm inside and a cry that makes your heart skip a beat thinking that she has either been attacked by her brother or broken a bone, when in reality she just wants to eat. It makes me laugh when I hear it because seriously you would think she was in horrific pain, but all it is is she is hungry... that appetite has been showing off in the chunky-ness of her thighs, I love chunky baby thighs, I could kiss them all the time... And finally I just can't get over how much she looks like Elle sometimes... I will have to post a picture of the two sometime and let you all guess who is who, it is sooo crazy, yet at the same time there are many times when she is just Marley, with her own individual little beautiful smile... what can I say, I think shes a keeper ; )

This is from the day we left the hospital -she looks so tiny

This is 2 weeks old - doing what she does best - sleep!

This is 3 1/2 weeks old - again with the sleeping

This is 6 weeks old - checking things out

This is 2 months old - posing for the camera (her serious look) : )

This is our not so little anymore 3month old....

keeping me company at around 11:30 at night!

5 years ago today I was......

2010-09-08T22:58:00.001-07:00

Tired!! 5yrs ago today our oldest little girl was born.... The day began early with us checking into the hospital to be induced at 6am... Elle didn't come until 6pm that night... so it was a long day of anticipation, stress and excitement. By this time the adrenalin had wore off and I was just in disbelief that i had a little girl, a little scared to think that I was a mom, but in heaven when I looked at her and knew she was mine.... Today I feel much of the same. I am tired, it has been a long day that began early, I'm in disbelief that my little girl is not so little at all and is now 5 yrs old, I'm a little stressed to think of all I still need to do for her "friend" birthday party on Friday, excited to think of everything she is going to do, and in heaven when I look at her and know that she is mine, all mine : )
Our day began early for 2 reasons... #1 a little girl woke up extra early because she knew today was all about her, and #2 was because we were going up to Primarys for a follow up appointment for Jack-will post more on this later -.... But this day was all about Elle, Steve and I felt bad that Jacks appointment was on her birthday, so we were determined to make sure that she knew that even though we had to go up and focus on Jack for a while that we knew it was her special day and we would make it that way.... It worked out really well that my sister Denise was still here because she helped us out by taking Elle to school which is something Elle just loved and helped with the whole making her feel special, so it was perfect.... she opened our gifts to her in the morning with her main gift being a new bike, she had so out-grown her 1st one so we got her a new one that both Steve and I were not sure if she would love or not but she did, it was the first thing she saw and she started screaming - score 1 for mom and dad : ) after she went to school she had her choice of dinner which ended up being Panda Express ?? and then she had more visitors bearing gifts... she was on cloud 9 all night, and she was pumped full of SUGAR, there was a point in the night where she was talking 100 miles an hour, all I could do was laugh, it was great!! But alas the night is here and her day is coming to an end, she seemed to have loved it and the fun will continue when she gets to have her friend party on Friday, but then will follow the many many days of asking "Mom, when is it going to be My birthday?" We love you Elle and are so blessed to have you in our family.... you are 5 going on 18 and that scares your momma more than you will ever know ; )

This is Elle bright and early in the morning.... let the sugar high begin

The gift...

At school where she got her special birthday crown and was the special helper for the day : )

We love you Elle!!!

SUPERMAN......

2010-08-30T21:57:00.000-07:00

How else can I say it... I do believe my boy is Superman..... Who else could go in for OPEN HEART SURGERY and leave the hospital less than 41/2 days later?!?! I will tell you who Superman a.k.a Jack... We were discharged on Friday morning, less than 4 and 1/2 days after we stepped into the hospital. Jack was ready, Steve an myself were not. We kept on saying "are you sure?", but the doctors told us there was nothing left for them to do, he was ready and doing "fantastic". I sooo wish I had a camera to take a picture of Jack as we were pulling out of the hospital parking lot. He was sitting in his car seat with the biggest, cutest, smile I have ever seen... He knew he was going home and he couldn't wait. They told us to limit the activity, and that a child will not do something if it hurts. First thing Jack did when we got home was try to crawl. but he knew right away something was different. He would start to go and then stop, sit up and wipe his chest... not hard, but like he was brushing something off his shirt. but now it's Monday and the boy will not stop... He just goes and goes, and although I have a heart attack about 5 times a day thinking he is going to fall straight on his chest he has not done it yet and I'm doing all I can to make sure he doesn't. I don't have to change the bandage until Friday so we will see how well the incision is healing then, for now I just give him a sponge bath with these really soft sponge things from the hospital and then wash his hair with the coolest thing - it's this no rinse shampoo, I pour it on jacks hair, its like water, then start to scrub his hair and it lathers up and then I rub it with a dry with a towel and wha la, I have a so fresh and so clean little man... For now this is all I can write due to time, but I will share some pictures from our stay... one of them is Jack without his shirt on so sorry if it is too much for anyone....

This is shortly after surgery and this was the first time we saw Jack.... I was REALLY worried about seeing him for the first time, but there was nothing to be worried about... like I said before after he got the breathing tube out he was a pretty upset-nothing like Jack- little guy for about 12 hrs....

This is the day after surgery and after a 7hr nap.... we started seeing signs of our little guy returning.... it was a really great feeling : )

This picture doesn't show at all how much Jack loved riding in this wheelchair, but every morning at 5am we would be awakened to go down and get an X-Ray done, and Jack LOVED riding in the wheelchair, he looked so grown up in it, and when we were going if he saw anyone it was like he was in a parade, he would wave and say "Hi".....

Finally, this was a picture of our room we were in when we were moved out of the PICU onto the "floor".... It was so great to have our own room, that had a window and just our own space.... Look at how great he looks!!! : )

I had to add this one in, this is Elle on her first day of school. It was hard for me to not be able to take her and be there on her little special day, but at least we got some pictures....

48 Hours Post-Surgery

2010-08-25T12:41:00.000-07:00

So it has been about 48hrs since Jacks surgery ended and what a trip we have been on.... Coming into this whole thing I thought of it as a 3 mountain process, the 1st mountain was to make it to surgery day, the 2nd was to make it through the surgery-a big part of that was making it through having to hand over my little guy - and the 3rd step was getting through the recovery, mainly the hard times until my Jack the happy sweet boy I know came back to us.. Every surgery before this point we would have a really hard time for the hours after surgery getting Jack to calm down, he would sort of turn into this really mad, nothing can calm him little person, so knowing this surgery and what it entailed I knew we were in for some really hard times, and we were.... The hours that followed surgery, once we were able to meet back up with him in the PICU were of Jack coming out of the drugs, he was really out of it and would open his eyes and you could just tell, they were glossed over and he was not feeling anything. Which personally I was glad to see, the last thing I wanted was my baby to be hurting, especially when I can do nothing to help. Later that night he finally came out of it and we were able to remove his breathing tube, they had tried earlier, but he wouldn't breath when it was out due to him still being so drugged, so when he did wake up he freaked out a little knowing that he was trying to scream and something was in his throat not letting him do that. So we removed the breathing tube and the anger began. He was not happy, and he was having some really bad side effects to the drugs he was getting. The main issue was that it was making him itch really bad, especially his face, which was already irritated due to the sticky things that had been holding monitors and stuff to it, so to say the least he was trying to itch his face, while we were trying to get him oxygen, and his face was getting raw. finally we were able to find a different pain medication that did not make him so itchy and we were able to do a blow by of the oxygen, even though as soon as he felt air by his face he would get really mad. That was pretty much how the first night went, he was mad, didn't really sleep at all, and he had a sore face. We were in an area where Jack and the next baby next to him were only separated by a curtain and across the hall were 2 other babies set up the same way. This posed a huge issue as when Jack would finally fall asleep any noise, ie a monitor, nurses talking, a pen dropping, would wake our little man up and he would freak out again in anger.... so on Tuesday morning we were moved to a private room, still in the PICU, but private, the feeling as we went into this room just were of complete peace, it was heaven and I know it helped Jack right away. He was given some pain medication, and it was finally one that was helping and had no crazy side effects, so he slept, it was wonderful he needed it so badly, my heart was hurting so much to see him not happy, and I would try everything I could to soothe him but nothing would work. That was the hardest for me, he would push me away and be upset with me and I just wanted to cry, this wasn't my little boy and I questioned what we were doing. But finally after he woke from sleeping about 6hrs, he was crying a little and I went to him and he reached for me.... I was in HEAVEN, he wanted his momma and I was able to hold him and make it better for him. My little guy was back, he even would do a few of his dance moves to his music which before he wanted nothing to do with. Little by little we are getting there, as more tubes are taken off of him he is just feeling much better, and he is getting back to his charming self. The biggest shocker to me is that he is moving and sitting up and looking like he wants to crawl and just all of these things and the nurses say that it is ok for him to do it, they have had no issue with it at all, I jump and try to stop him with any tiny movement he has and it now is not such a big deal. The only time we really needed to control his movement was when he had the breathing tube still in but besides that we didn't really have to control his movement unless it was something crazy, but he really didn't try anything like that so it's been a learning experience. Now we are at waiting and having x-rays, blood and echos done... They did remove his chest tube this morning and we might even get moved out of the PICU today onto the main floor.... so that is the update for now. it's been a crazy ride so far, but I'm feeling at peace finally, I can breath. I know we are in for a long road of recovery but the big part I feared is almost over...

Say A Little Prayer

2010-08-22T22:05:00.000-07:00

In about 5hrs we are heading up to Primarys to take Jack in for his Surgery. I'm just posting to ask you to keep him in your thoughts and prayers. also if you could send some good vibes up for the surgeons so that they will have a clear mind and be lead in what they are going to do to help our little mans heart. Thanks Everyone!!

1 Week

2010-08-16T09:03:00.000-07:00

So this might seem like a negative post so I'm warning you now.... Jack goes in next Monday, I can't believe it's this close already. I have lot's of people telling me that everything will be ok, that lot's have done this thing and have done such a good job at bouncing back in the recovery process, and I totally get all of that. I even agree, but then my reality jumps in and I want to scream, but this is my son, this is my little man that has to do this, I don't know any of these others who have had the surgery and recovered well, I only know my little man. Our little guy with the huge smile that shows all of his crazy teeth, the little man who is doing aWeSoMe things right now, like going from sitting to standing up for a second all by himself - not holding on to anything!!! I worry not about the scar but about how the scar got there, about what had to happen to give him that scar, I worry about seeing him for the first time after, with not only the major incision covered up, but I worry about the other tubes that he has to have coming out of him. I worry about something going on during the surgery that will cause new issues to come up. I worry... that is where I am at right now worry, stress and totally freaking out. Sometimes I feel just numb, I know how scared I am but I also know that I still have to function somehow and I think the way to do that is to go numb to all the thoughts of the surgery and move forward. I'm like drifting along through my days totally numb to the feelings of me screaming inside, but that is what Moms have to do sometimes.... put on that smile for your little ones so they know you aren't scared about anything, go through your day to day events as if nothing huge is on the horizon. I know my stress is coming out a little, I'm being a little short with Elle and I feel horrible about it but I can't be perfect and that little girl knows what buttons to push with me and everyone in the family : ) For now though I'm trying just to hug them all... not take any moment - good or bad -for granted... I love when elle will come and give me hugs and say something that is so grown up, it's funny and crazy to hear all at the same time... I love how when Jack wakes up from a nap or from sleeping and I go in and pick him up, he just snuggles so perfectly with me and does it every time... it's our special little moment and I look forward to it every day... and finally I love how Marley is starting to talk and smile back at me after I tell her how pretty she is she will get ready to say something and have this beautiful sound come out and then she smiles, the sweetest little grin I've ever seen... These moments I could just live in, I love them and just by putting those memories down in writing I have made myself happy again, not numb to anything - just happy with the little blessings I have : )

2 Months!!!

2010-08-09T19:00:00.000-07:00

I can't believe our little Marley is already 2 months!! We went in today for her appointment and she is doing great! Weighing at a huge 11lbs 11oz she is in the 60th percentile, but in height she is in the 93rd percentile. I am relieved, I swear I just worry that she is not going to have gained any weight, sometimes it seems like it takes her forever to finish a bottle, but then there are days where she just goes and goes.... They gave her some vaccinations and it hurt my heart to have her cry. Both Jack and Elle always did really good, they would maybe have one big scream but then would be totally fine, Marley on the other hand had a lot of cries, she was able to be comforted when I picked her up which was good, but she defiantly did not like being poked at all, but I guess who really does?? Here is a picture of our little girl who is growing up way too fast:

Here she is with big sis.... We tried to get Jack in the picture but he was not interested today.....

This past weekend we went to the Highland City parade. Here in Utah the summers are filled with parade after parade. Every city has their own little celebration usually with a little carnival type thing, a parade and then a bunch of other various activities, it's actually pretty great it takes me back to when Rye used to do the one homecoming parade down main street, I so LOVED that as a little kid..... Elle loved this parade as it seems to be the one where you get the most candy. She did a really good job at waving to get some thrown her way, and although there were some kids who would come over and grab the candy thrown to her before she could get to it, she did good to try not to be too sad... I on the other hand almost drop kicked those kids, I mean come on if Elle went and tried to grab candy that was meant for another little kid you better believe that I would make her give it to the little kid, yet you have these kids parents that just sat there and did nothing..uhhhhh!!! but here are a few pics of the parade, my favorite part by far is the beginning when the cops on motorcycles come through doing little zig-zags with the sirens going... it's probably the only time I like to hear that siren, but then after they pass the flags come through and everyone stands and puts their hands on their hearts, I get chills with that, and finally the bagpipes come through and I just love the sound of the bagpipes, I could probably leave after that but I have a little girl who loves everything else.... we had a great time : )

Recap

2010-08-04T08:57:00.001-07:00

Well July has flied by.... It seemed like it came and went in a blink. We stayed really busy, after the 4th of July trip my sister Erika and her family came in to visit her husbands family. We were able to get together a few times and the girls had a sleep over which Elle LOVED, it was way fun and really sad to see them go. Then we had Jacks surgery which you got all the info on already, and after that my other sister Denise and her daughter Nadia came out to visit for a few days then Nadia went to a BYU soccer camp. And finally my little brother Matt came out for a quick trip to visit so we got to spend a little time with him. That was really nice because for our family reunion he had to leave early and we were not able to go to Rye with the rest of the group where he met up with them again. So it was nice to get some time with him.... Elle was on 24hr fun-mode again and just wanted to go go go, the problem is that her mother -me- did not. Life gets a little tricky when you are hauling around 3 kids vs 2. I think the hardest part is that Jack isn't walking yet so it's 2 trips to the car every time we leave and come home. He is getting really close, he loves to stand up and he is wanting me to hold his hands so he can walk a lot more than he has before. He loves the stairs and now he knows how to come down them safely.
He is doing great, which leads me to the news..... His surgery is scheduled for August 23rd. so a little less than 3 weeks away. I should have known it would be around that time, I mean out of every week in August, that week is by far our busiest. Elle starts school and dance that week, and on that Monday - the 23rd - she has an open house to go and see her classroom and meet her teacher. Oh well Steve and I will miss out on some things but I'm sure Elle will be totally fine, she just wants to meet her classmates and start playing right now : ) I've been talking with some other parents whose children have had this type of surgery, and I'm learning a lot. Some good some that I would rather not think about. It seems like the first 3-4 days will be the hardest by far but from there it's just little by little. I worry the most on how we are going to keep our little man from moving. He follows after his sister and loves to just be on the move non-stop so to limit that is going to be REALLY hard. Hopefully the doctors and nurses have some sort of plan for little ones who are like that, I would think so. Oh well we will just have to wait and see....

The News.....

2010-07-17T12:45:00.001-07:00

So he made it!! We actually were finally able to get him into surgery...... I was still holding my breath as we were driving up to the hospital, I was thinking what if they turn us back? But we got there, went in and were actually able to go with him into the room while he went through the final prep of falling asleep. It for whatever reason put my heart at ease to see where he would be at and who was going to be there with him, now what didn't put my heart at ease was the page we got after only 1hr and 30min of being in there when we were told the procedure would take about 3hrs... so we went down and the doctor took us into his office to go over what they found. the hole they went into repair was now coiled off and it showed that no further blood was going through it so that was good news. We were also told that in a lot of cases these heart issues cause the arteries going into the heart to be soft, but all of Jacks were very strong and healthy. The bad news, the news we so didn't' want to hear was that the other hole in his heart, the VSD was actually bigger than what the ECHO suggested it was, and therefore open heart surgery will be our next step. He showed us a view of the heart pumping and it showed just how much more blood is going into the right side of his heart because of this hole. from what was measured it is about double the amount of blood than what is in the other side. The news was very discouraging, frustrating and heart breaking to hear. I just wanted to see Jack right then but he was in the PICU recovering. After about an hour or two he was transferred to the area where we could be with him. When we saw him he was just sleeping so peacefully, and he just looked so comfortable. I looked at his chest and thought of what was next and broke down, but the conclusion I have come to is this... the doctor said that going in and closing this hole with be a cure... that's right a cure, Jacks issues with pressure in his lungs and heart will be cured, he also said this is a surgery that is a get in and out, it is just this one hole that they will patch or sew up and then they are out of there... so no reconstruction or anything like that, so if there is any light in this tunnel that is it.... Thinking of everything else just puts me into panic mode so I focus on that... the cure for my little boys heart issues.... Jack woke up and was just such a trooper. He was even happy, but after a while he started getting tired again and got a little grouchy, but I stress the word little... you would think after everything he would be more than grouchy but he wasn't, and really all it took was getting him some food and he was good. I love that boy more than I can say and he just amazes me every day. I don't know for sure how everything is going to go, and I don't know why we have to keep getting these setbacks but I do know that I would do anything for our little man, and I pray we are doing what we should be...

Time Flies.....

2010-07-14T13:35:00.001-07:00

Wow, I can't believe it has been over a month since Marley has come into our lives. So much has happened. At her 2 week appointment she had gained 14oz. since she left the hospital and grew 1 inch, this was a huge weight off my shoulders as I was so worried she wasn't gaining weight, she was eating, but sometimes I would catch all the milk just spilling out the side of her mouth... She also was our first child that did not have to go under the jaundice lights.... it was a miracle!! I couldn't believe it, she got really close but we never had to.

At the end of June my family was having a family reunion in Pagosa Springs CO. so we packed up a rented mini van and headed out... The kids did really great, Jack and Elle of course had the hardest time but we made it. Elle was on cousin over-load and was playing non-stop. She loved it but we had to do some detox once we got home and there were not a million little kids to play with. She loved it, and I was so glad we were able to go. I loved seeing all my brothers and sisters and their families. It was a really nice time. We took family pictures and actually got a pretty good one...

When we got home it was right before the 4th of July weekend so we unpacked just in time to pack again as Nancy- Steves mom had got a place up in Park City for Sunday and Monday night... so we headed up there and once again Elle had a blast. She loved the pool and all the activities that you could do. Jack loved sitting on the side of the pool just kicking his legs/feet in the water. I think he probably could have done it the whole day if I let him.... We went to the outlets which I have to say I was sort of sad, there weren't that many really good deals which I thought we might be able to get as it was a holiday weekend, but no luck...

Finally we made it home and our home was an absolute mess, its taken about a week to get in order and I have finally caught up on laundry, just in time for Jack Surgery which will be Friday... with it being Wednesday now, I'm crossing my fingers that he will stay healthy. We need to get this over with, and get past it. We have waited about 3 and 1/2 months to finally get this process started and hopefully this surgery will be all we will need.

Jack has had the hardest time adjusting to Marley. When we first came home Elle was just soooo excited she is the best big sister holder around. She loves to hold her and she does such a good job just sitting still. That was part of the issue with Jack he had less attention from his older sis, and from his parents. There were a few days when he would just go over to this little spot he picked out and sit there with a sad face. It broke my heart but made me laugh at the same time. But now he is getting a lot more into having a little baby around. He started saying baby and he will come and look at her... sometimes he wants to be a little rough but he really is just wanting to get close. It has been a crazy 4 weeks but full of fun...

She Is Here!!! Sorry about the late update : )

2010-06-16T20:59:00.001-07:00

Our little girl has come and oh what a time we are having with her.... She decided to make her arrival into this world on June 9th 2010. Here she is and I have to say she is a beauty : ) There is just something about a brand new baby, they have such a sweet spirit that you can't help but love to be around.

I was always wanting her to have her own little story of how she came to us and boy did she deliver. You would think that after 2 children knowing when your baby was going to come would be easy. But just to justify my craziness, Elle was induced and with Jack my water broke but I never really got a good taste of "real contractions"..... So here is Marleys story:

I had been to the hospital 2 times once on Sunday night and the second on Tuesday night due to really hard contractions that were lasting about 1hr before I decided to go in. But alas I was checked and hooked up to a monitor to sit for 1-2 hours before getting sent home. The contractions would be there and were real but they would soon die off as I was being monitored. So after the 2nd turn away- which by the way I was dilated to a 4 - but then again I was dilated to a 4 the first night we went in.... But anyway we got turned away on Tuesday night so I told Steve there was no way I was going back unless my water broke. Well Wednesday morning 5:45am I am awakened by a huge pain. aka contraction. I look at the clock and get through it and then went to check on the kids. 10min later another one, I just started to cry, I was like are you kidding me?? why does this keep happening, and then told myself I am not going in.... These contractions went on for and hour and stayed a good 10min apart, but at that hour mark they started to get closer, more like 5-7min apart. Steve was like I'm calling my mom and I would scream NO I am not going in, there is no way I was going to be turned away for a 3rd time, I already felt crazy for going in the other times and I didn't want to go through it again. Well Steve called his mom and she got to our house about 7:40am, by 8am we were in the car, I was thinking there is no way that I am not in Labor it hurt sooooo much, these contractions were sooo bad. We hit morning traffic and I felt like my hubby was driving like a turtle, it took all that I had not to go crazy, but when he slammed on the brakes instead of going through a yellow light I was like"WHAT ARE YOU DOING??" Im so sorry Steve but I was in so much pain, he was also wayyyyy stressed and I know it was hard for him, after the whole ordeal he said he just had never seen me in so much pain and he didn't know how he could help... But we got to the hospital and of course it was right when another contraction came along. I couldn't walk, I think the nurse knew we were close when she saw us come in because they rushed us back... we got into the rooms where they asses you and I was checked and at an 8 they were getting all my info down and I was just like I need the epidural asap. Steve was in and out of the room breathing probably about as hard as myself and the nurse was like what is going on... but what it boiled down to was the fact that we were there, this baby was coming and our last experience like this was when we had Jack, and he came with a little extra surprise that at the time we were not prepared for, so it was crazy to be back. Well a contraction came and went and we were being moved to the actual birthing room, they didn't have any wheel chairs so I sort of ran as fast as I could to the first avail birthing room. It was so funny because it is a room all by itself, if you know the hospital they have one long hall of all the birthing room and then there is this room we were in and it is over in a total different area and I remember telling steve as we left the hospital the night before that it would be crazy to have that room because you are over in an area all by yourself, and then there we were. I was checked again as soon as we got to the room and I was at a 9. My doctor was out of town so I had a doctor that I had seen his name but never met come in. He introduced himself and checked me again, we were waiting on the anesthesiologist to come in, it was too late for an epidural so I was going to get a spinal block, the guy finally came in and thankfully as soon as he got me set up the pain was gone, it was heaven. The doctor then broke my water and said if it had broke at home or on the way Steve would have delivered this baby. That about made him pass out but there wasn't time, the nurse said the baby is here and then she was. It was all so fast which looking back it really needed to be, if we had too much time it would have been stressful, Jacks birth at times seems like it happened yesterday, so to have so many things going on keeping your mind just focused on this little one it was nice. Again I don't want to take away from the beauty of Jacks birth because it was full of amazement, but like I said we just got an extra surprise at the beginning.... Anyway Marley weighed 7lbs 8oz and was 20 inches long. We love her to death and are just so happy she is here..... I will have to update again on how the family has adjusted to the new little addition, but for now here is our first offical family picture with all of us together.....

Here we go......

2010-06-03T09:10:00.000-07:00

So May has come and gone, and the little one I was hoping would have a May birthday has decided that she wants to come in June. Yes she is still happily poking and moving in the craziest positions all over my belly. I went to the doctor and we had quite a talk. With Jacks PDA closure coming up very fast he gave me the option of going in on Friday-tomorrow- and doing an amnio to check the babies lungs and if everything was good delivering her on Saturday. I am measuring small - which personally I'm like are you kidding, do you not see this HUGE beach ball stomach sticking straight out- but alas, he says I am measuring small so we need to do the needed steps to make sure everything is fine if we want to get the baby out right away.... Otherwise we can just wait and if she is not here by the 14th then for sure we would induce that day..... I for a few minutes felt as if I had to pick a child... Either I choose Jack and just focus on his procedure and make this baby- Marley- come out sooner than she would like, or I choose Marley and let her come when she comes knowing that if it comes to Jacks surgery and she is not here yet we would need to change his whole thing..... I was being pulled in a million different ways and started feeling very bad, Steve was at home with the kids and my doctor was waiting for an answer..... So we are waiting on Marley, the thought of an amnio at anytime during a pregnancy is not a good thing to me. I want Marley to come when she wants to come unless she waits until the 14th ; ) We moved Jacks procedure up to Monday so unless Marley decides she wants to come right away, we should be good.... Even if she does we still have the spot for Jack on Friday the 11th so we could still make sure he is taken care of sooner rather than later. I felt really good with this decision, I think it is the best for both kids and hopefully all will work out fine. I'm sure it will..
Now on to a little update on Jack I was right on with his weight he is a whopping 27lbs, but I was a little off on his height, he is 35inches!! On a typical childs chart he is in the 77th percentile for height, this is SOOOO CRAZY as everyone would always tell me don't expect to see big percentiles for your child, if they even make the charts, and here is our not so little man in the 77th percentile for height and the 54th percentile for weight. We all know where he gets this from of course - ME - so I should have known he would be off the charts!! I was so proud of him...it's a crazy thing as his pulmonary hypertension in his heart and lungs tells us that he should not be growing or gaining weight, I pray that is a sign that all we will have to do is close this hole and the issue will be resolved, oh that would be really good.... But there you have it, on a last side note, Elles last day of school was a few weeks ago and they had a circus day. Well I guess in one of their activities the kids were given those orange peanut foam-like candy things and she LOVED them, which makes me laugh as I would always cringe when my mother would get those, I never really took any sort of liking to them, and now I have a daughter that requests them : )

Almost June

2010-05-28T01:45:00.000-07:00

So I can't believe it is almost June!! I wish that this Memorial Weekend we could go somewhere, but with the baby so close and Elle has a dance recital on Saturday we opted out of going to Park City which is where we have gone in the past years... Jacks birthday was so nice, we had a great time on Saturday with family coming over for treats and play time with Jack. Then Sunday - his actual birthday- it was just a really nice day weather wise so we were able to go for a walk and spend time outside finally!! Jack seemed to like the idea that it was his birthday, when I would sing the Happy Birthday song to him I would point to him every time we sang "You" and he would just start laughing or giving his little shy grin, it was soooo cute. Elle LOVED helping her little brother open his gifts, although I'm not quite sure he needed as much help as she gave. But as always she was so cute with him. We wanted to save a few gifts for him from Saturday to Sunday but as the afternoon moved into night she kept saying "can we open just one more" so by Sunday morning he had 2 of his gifts left to open. I can't believe my little man is 2yrs old. He is doing so good, we are just so proud of him and his sister.... Besides that we are just waiting for our little girl to arrive..... Mommy really wants her to come asap, Dad would like her to make her way into this world sometime next week, but I think Elle is with me on this one... She was talking to my belly tonight saying "we really want to see what your hair looks like and what your face looks like, so please come out" We will just have to see.... We have moved Jack out of the room we have used as our Nursery for both Elle and him. His new room is very cute and we are tackling the challenge of moving him out of a crib into a toddler bed. I was worried at first, but now seeing him climb in an out of the bed I'm not worried at all.. It is so cute to watch him get into the bed with his little legs climbing up - again I need to take a picture- but then even if he were to ever tumble out the bed is so close to the ground that it wouldn't be too bad if it ever happened. The great thing is that we put some pillows up to block the one area that is not "fenced" in and he doesn't even try to move it, so I think we are going to be ok at least for a little bit : ) The Nursery still needs help and hopefully in the next few days we will be done I feel like at the end of everyday I have to start upstairs and work my way down to the basement cleaning up everything, some nights I only can tackle the middle floor or a few rooms upstairs, but I'm hoping very soon our whole house will be really close to being all organized. We are close so keep your fingers crossed.... So that is where we are at, very excited for this little one in my belly to come and join our family, and getting ready for Elles dance recital on Saturday, it should be something to see : )

Turning 2.....

2010-05-13T20:46:00.000-07:00

So Sunday is Jacks 2nd birthday and I cannot believe it at all.... He is growing up so fast!! It also seems like in the past few weeks he has just started doing things that he never wanted to before. We are so proud of him and love him to pieces. Here are some of his stats and what he is doing right now at the ripe old age of 2:

He currently has 9 teeth coming in pretty much wherever they want to ; ) He is approx 27lbs and is about 32 1/2 inches.... I will have exact numbers once we go to his checkup but I believe that is where we were at when we had to do all that at the hospital a week ago... He loves music and anything that will make noise when he plays with it. He will wave his little arm in the air - it sort of looks like he is trying to lead the music - when a song is on in the car, and he really gets into it if it is a song that Elle starts to sing... He knows exactly what he is NOT supposed to get into and will do it with this look on his face that makes you just laugh. He is extremely smart and when faced with a situation that he is not pleased with he will find a way out. We try to block him into a certain area at his Grandmas house and we put chairs in the way so he can't roll or crawl out, but our little man has found that all he has to do is crawl under the chair and he is free as a bird. He LOVES to bug his big sister, and he tries to do it in the sweetest way, but if there is a button to push to make her crazy, he knows it... He gives the BEST kisses ever, I need to take a picture of him giving one to Elle, you will just melt, and if you are a lucky recipient of one it makes your heart flutter, they are so sweet, and the best part is that they usually are not that slobbery : ) I could go on and on about this boy but for now I will contain myself. He has changed our family in ways that only he could, and we are all better people because of him... Happy Birthday Jack, we love you sooooo much!!

Mothers Day

2010-05-10T09:44:00.001-07:00

Just wanted to post something really quick... I had a great Mothers Day, Elle did soooo good in church when the Primary went up to sing. she walked right up there with no help, tried to push her way to the front and sang both songs, although on the 2nd song I think she was just saying whatever word she thought was right, it was super cute and I know I looked like a crazy mom smiling so big trying to see my girl sing, but oh well..... the other thing was on Saturday we were talking about how you want to be so good to your moms on Mothers day and Elle out of no where asked "When is it childrens day?" I laughed so hard and I'm sure you are all thinking the same, childrens day is pretty much everyday, and that is exactly what we told her..... Happy Mothers Day to all of you amazing ladies out there- and yes I know that is a belated happy mothers day, but oh well : )

Drama, Drama, Drama

2010-05-07T09:47:00.000-07:00

I was talking to my sister the other day and as I was telling her everything that is going on I just started feeling like I am this HUGE drama queen, and for me that is so the last thing that I want to be. Yes our life has been filled with huge ups and downs ever since I received a call from our doctor on March 29th and I wish so much that the past month could have been just one straight plan that we could stick to but reality is that it wasn't and with everything inside me I know that the next month will be the same, huge ups and downs. I write about what is happening in our lives and right now a lot of it is focused around Jack and his story, but we do have lots of good times inbetween the doctor calls and visits. I know I've said it before but there are amazing things going on... Jack is still pulling up to everything, and I mean everything, and everytime he does there is a huge round of cheers and you can see the pride in his eyes, and the smile on his face is something that just sticks in your heart, he just knows he is doing something that he was afraid of but that he beat, I love to see that look everytime......
Elle has finally come around to soccer and said how much she loves it, even though her playing skills are still the same - she is not totally comfortable with getting right in the middle of the herd to get the ball- but she loves to run back and forth. And finally yesterday I was blessed to be able to go to Elles school for a little mothers day presentation and although Elle was not totally into it she made me this very cute note and necklace which she was so proud to show off to daddy.... It warmed my heart and some days when I look at her I can't believe she is getting so big. She is my little buddy and helper. The day we were up at Primarys I just missed her so much, she is usually one step behind me or right beside me almost all the time everyday, so it was so hard to not have my little shadow there by me at the hospital. She is the best big sister to Jack and I can't wait to see her relationship to her next little sister. She is so ready to have her here, it will for sure be something to see..... And there you have it hopefully our lives will begin to slow and drama will go its own way, but for now this is us call it what you may : )

3am in the ER

2010-05-05T19:30:00.000-07:00

So Monday night was not so great.... Jack was having major issues with his oxygen so finally around 2am-ish I just took it off... he was just having such a hard time. But even after taking it off he was still moaning and crying, I wanted him to just get through it, you know cry it out, but then he started crying in a way that told me this is not normal. I went in picked him up and he was shaking, very hot and breathing a little weird. I took his temp, and although he felt really hot he didn't have a fever. I went back and forth on what to do but with all 3 issues combined everything in me said to take him into the ER. So off we went. Steve stayed home with Elle, and by the time we got to the hospital Jack had calmed down a little so I was like, I hope we made the right choice by bringing him in. I guess what was weighing in the back of my mind was this story I read on numerous blogs about this sweet little 8yr girl, who happens to have DS, but she went to school one day, the next spiked a fever and within 3hrs had passed away. No one knows why, but it happened so fast I was sort of in the mind set that things like that can happen to anyone and they can happen out of no where and so fast so we needed to act....
So there we were at the ER by the time we got there Jack did have an official fever the doctor checked all his vitals and when he was trying to look down Jacks throat Jack threw up on my leg... which is so crazy because that is seriously the first time he has ever really thrown up, so I got my self some official hospital scrub pants- which I'm sure I was billed for - and waited to see what we would be doing. A respiratory therapist came in to take a sample of his runny nose to test for RSV and then we went in and had a chest X-Ray done. The doctor came back and said that the chest X-Ray showed signs of Pneumonia on his right side of his lungs... It was just a mild case but it was there and due to his heart and lung conditions he wanted to admit Jack to the hospital for observation... but not there in American fork, he wanted us to go up to Primarys. I was like really are you serious?? The doctor was sort of on the fence he went back and forth on just sending us home or sending us up, but in the end he said he would rather error on the side of caution. I called Steve who then talked with his mom who was on her way over to the house to watch Elle - Thank you Nancy sooo much - but then at that point I was also told that we would be transported by ambulance honestly my mind just started thinking what is all this going to cost?? but when I shook that off I knew that we would do anything it took to make sure our little man was ok. I guess they just wanted him to stay on his IV and oxygen for the ride up. On a side note, Jack LOVED the ride up, he was playing hide and seek with one of the EMTs and just laughing and smiling, it was good to see, due to the earlier experience of having to hold Jack when they got blood and put in the IV.... he has done really good in the past but at the same time that was usually with people who worked with little kids so they were used to the little veins they would have to find, this night the guy doing it was trying to do a good job, but I know it was killing Jack, he was in some major pain and it made me break down at that point... After getting past all of that we made it up to Primarys and because his fever was down to normal and his vitals were all perfect we just had to wait until some doctors from Cardiology came to check on him... Around 2pm we finally got a visit from a cardiologist, followed by 2 more from 2 other doctors.... At that point we found out that we would be postponing his PDA surgery closure that we had scheduled for on Tuesday. I was like of course we would have to do that and not only that, but we would have to wait 4-6 weeks before we could get him in again... 4-6 weeks why does that time frame seem so familiar? Oh yea, that is when I'm due : ) great timing....I guess we will see what happens next. I'm not so worried about the PDA surgery its more of the thought of if it doesn't work and we have to go through with the open heart.... I guess I will just have to have the faith to know things will happen as they should, and I will pray that this 1st surgery will be all that we will need....

We got some news!

2010-04-27T08:29:00.000-07:00

Finally!!! We finally got a call from the cardiologist, actually it happened around the same time I went out and got the mail, which contained a letter from the sleep study doctor, showing the results and her summary of the study. But I spoke with the our Cardiologist, Dr. Judd, and she said that the sleep study looked really good but that his oxygen levels were not as high as they need to be. He stayed around 90-92% which was an improvement but Dr. Judd said they needed to be up more around 94%.... so we will be moving forward with just closing the PDA (surgery that requires just going up through a vein to repair) and then after the surgery is over checking the pressure levels to see if we will need to go in as well and close the VSD (which would be the open heart surgery).
This to me is good news, his sleep study was a huge relief and it was such a good feeling to see how much just getting his tonsils and adenoids out helped... in the doctors words we went from "This was a very abnormal sleep study, which showed severe sleep obstruction" to "This was a very good sleep study..."
The one down side is that because Dr. Judd wants his oxygen levels to be up more, we had to start him on oxygen at night time. so he has to have a tube thing going up his nose a little-which he totally hates- the whole night..... we had a O2 monitor on him last night that showed his levels stayed at 97-98% the whole night, which is good and the doctor said that once he gets a little stronger and his airways get used to opening so well the he would not need the O2 anymore... The surgery should be within the next 1-2 weeks so that is why we started him right away on the O2..... I'm hoping to be on it for about a month but we will have to see with surgery what happens... It was hard getting him all rigged up with the tube and everything, I felt like a nurse for a while, but once on and he calmed down he slept through the whole night... He is such a little trooper..... so for now we have a plan, I should be getting a call today on the exact date of the surgery, but at least we have the results and can move forward..... Finally!!
Now for some pictures:

Here is our Soccer girl before her first game.... we have soccer shorts for her but she refused to wear them due to the lack of the color pink... they are black and white.... so we had to settle for blue jean shorts?? She has black and pink soccer shoes and her socks of course are pink as well... Oh the things you have to do for a little princess...

This was at the 2nd Soccer game and as you can see we were successful in getting her soccer shorts on... you can't see it but what we had to do was use a marker and color the 2 white lines on the bottom of the shorts, one is purple the other pink, but hey it got her to wear them : ) The picture of her back is showing you the patches they get after a game. The coach will give them a soccer ball patch just for showing up, and then they get a special patch for doing something during the game, like good defense, falling down and getting up without crying, team player etc.... Elle loves the patches and I thought it was a really cool idea..

Here are our 2 munchkins at halftime.... Elle relaxing Jack loving sitting by himself in a big chair ; )

This is Jack the morning after his sleep study.. and he was supposed to sleep like "normal" with all those things on his face that had wires connected to each of them????

what you don't see are the 3 that were on his chin, the 2 behind his ears, the 2 on the back of his head, the four on his legs and the 2 on his back... oh and he had a tube across his face to measure his CO2 levels and then around midnight they added one more to give him more O2.... That would be soooo relaxing to sleep with ; )

I Really Wish I Had An Update...

2010-04-26T09:29:00.000-07:00

So we did the needed last minute tests about a week ago, and STILL have heard nothing back.... But I did finally get a call from our cardiologists assistant, letting me know that she was out of town on Thursday and Friday last week so she will try to find the results and let me know today hopefully what we will do, Im so keeping my fingers crossed....
Besides that there is not a ton of things going on... I really need to go get my camera and post some pictures. I guess you can say we are officially a soccer family. Elle has started soccer and is doing pretty good. Her first game she scored a goal, but it was by some sort of miracle... I think of the incident and it is in slow motion. You see Elle is not so into soccer right now, she told us the first game she doesn't like how everyone is by the ball, so she usually ends up running behind the storm of players or running somewhere not even close to where the game is going on : ) So when she was in the cluster of little girls trying to kick the ball, somehow she got out in front of the pack and she was kicking the ball down the field, I thought for sure she would miss the goal, but somehow she made one last kick and it slowly started to go to the goal.... there were 2 little girls from the other team right there, one of them just an arms length from the ball, but for whatever reason she didn't care to go for the ball, so it slowly made its way past that little girl and with the help of some fairy and wind it rolled into the goal.... what a moment!! from that point on Elle was interested in the game, you totally saw this change in her, but then again that only lasted for the rest of that game: ) We have since had 3 more games and she is back to just running back and forth, maybe getting into the action a little here and there but for the most part she still doesn't like the group thing..... Oh well, its her firs try and I think she will get more into it in a few more seasons..
Jack continues to shock me everyday. You see his PT and I have been trying to work with him on pulling himself up and he will do it when we are working with him, but then nothing after that. Well he started to get the pulling thing up in his crib. He uses his arms alot which was something we were trying not to do as he needs to use his legs more to build up his muscles, but we cheered him on so loud when he started doing it. Well now I will leave him for a second turn around and he has pulled himself up on something else around the house... The ottoman, their little play kitchen, and even over by the window... It's crazy exciting for us and the next step will be for him to start cruising... We are so happy and all of us go crazy when we see him do it, Elle being his biggest cheerleader of course : ) I know it might not sound like much, but it is huge for us, one of those things I was just like "Is this ever going to happen??" Well he showed me : )

Here is a picture of him after he pulled himself up on their play kitchen...

I will post some pictures of our soccer star once Im not so lazy and I go up and grab the camera....

Changes Again!!!

2010-04-16T07:23:00.000-07:00

So what a difference 24hrs can make. I got a call from our cardiologist and she now feels like we need to do one more test before the surgery just to check on Jacks obstructive sleep apnea that he had back in October. Now because of the apnea we did the tonsil and adenoid surgery, so now we need to see how much improvement was made by doing it. Here is the hitch, she wanted us to get in and do the test before Monday-surgery day-, now she told us this Wednesday night, and on Thursday the doctor that we need to go to could not get us in until Tuesday, so we waited to see what was next. Dr. Judd our cardiologist called Thursday afternoon and felt the best route to go was to postpone the surgery until we get the results from this new test.

The reasoning is this: If we find that Jacks apnea has cleared up completely then we would go forward with the open-heart surgery and close the 2 holes in his heart. If the apnea is still there, then there is an issue with the breathing tube that he has to have in during surgery, and having the tube in him for so long will cause some complications with trying to remove it after if there is still obstructive apnea. In this case what we will do is a different procedure where they go in through a vein in his groin up to his heart to close off 1 of the 2 holes (the PDA) that is accessible from the outside of the heart. This procedure is wayyyyy less evasive and would not require the craziness of open heart. They will then be able to test the pressure levels in his lungs - which bottom line is what we are trying to fix- and by doing that should see that they are down and the issue has been fixed.
If the pressure is still there we will have to go through with the open heart and fix the other hole - the VDA- but by only having to fix 1 hole even with the apnea it should be a bit easier to work with the breathing tube as the surgery would not be as long as if we needed to close the 2 holes. Its all VERY confusing and we are still trying to grasp it all, but the thought of not having to cut through my sons chest is a very calming thought.... Although the thought that we would maybe still have to end up doing it is frustrating as well, trust me I go back and forth on how I feel about it, but at least giving this other option a try first, with the chance of it fixing his pressure in his lungs, I guess is worth it- I guess.....

I do have a MAJOR issue with this all coming up now -3 days before the surgery- and not 3 weeks ago. We have had to make crazy plans to have everything covered in all areas of our lives and just the emotional ride we have been on was just exhausting. So from that side I am really frustrated, instead of telling us he needed open heart surgery, we should have been told this other test was needed and then go into what our options were pending those results.. ya know???

So there is the update very long and confusing I'm sure, but again we are now waiting for our appointment on Tuesday and we will go from there. I'm a little to tired to be way ticked off but trust me that is how I feel. I can't thank you all enough for your prayers and thoughts, we are praying in hope that his sleep apnea improved.. the chances of it clearing completely after his tonsil and adenoid surgery were only 5-10%, so we are just hoping with all we have that he has moved out of the severe range to the mild- that would be good news..... News that we could be happy about, at least until we find what mountain we will be facing next in this journey to fix our little mans lungs and heart.....

We Got Bumped

2010-04-14T08:32:00.000-07:00

So I got a call yesterday and they said they were needing to move us up a day. You may think just a day no biggie, but when I think ok now we are doing this Monday, it seems like oh crap we are doing this Monday?!?! Monday seems way closer to me than Tuesday, but in one way it helped. We have to go up the day before and do lab work, get some x-rays done and some other tests and we were going to have to do that on Monday and I was worried about what we would do with Elle, but now that we got moved up we will take Jack in on Sunday and we have Grandma here to watch Elle when we go... Steve later informed me that Nancy was going to be off Monday anyway so it really wasn't an issue, but for a while it was to me ; )
So there you have it, Monday we will go in. I think we just keep repeating this is going to fix his issue, and if we didn't do it the consequences would be much worse than going through with it now.... At least that's one way of looking at it.

8 days...

2010-04-12T11:49:00.001-07:00

So the countdown will begin. 8 days until my little guy goes in. 8 days until this new scary experience will start. I have bad dreams about handing him away. It was so hard when we took him for his adenoids and tonsils, because we literally handed him to a nurse and she took him back, his big blue eyes just looking at me not knowing what was going on. I hated that feeling, and now thinking I'm going to have to do it again, this time for a completely different reason with a whole set of different feelings, it hurts to picture it in my head. Jack has been extra cuddly lately. He wants to be held and he just snuggles up right in that area between the side of your neck and on your shoulder. I told Steve that I think he knows something is going on, it has just been the strangest thing he wants so many hugs and snuggles. But Steves answer was this: He knows his mommy and daddy need some extra loves right now...... And you know what, that makes perfect sense.

Elle on the other hand is super excited for her adventure. She can't wait. We have tried to explain how Jack will look when he comes home, and I think until she sees him that is when she will really get it. They love to just wrestle each other, sometimes I start to go crazy but then they both start laughing so hard I can't do anything but laugh and let it continue. The other day we were checking out at a store and the lady helping said of Jack, "Oh he is such a doll", and Elle said, "No he is a boy, he's my brother and his name is Jack and we have a baby sister coming in my mommys belly and we are going to wear the same clothes and play with each other all the time...." I was laughing hearing her explain our life to this lady, it was so cute. Elle will also tell Steve and I all the time that she is going to marry Jack. And we ask her why she wants to do that and it's because she wants to always live with him, so they are going to get married : )
I need those little moments, April 20th seemed so far off when we first got the date, I was like oh that is at the end of the month, there is so much time, but now its almost here I can't believe it. I talked with a lady whose son had the surgery when he was 2 1/2. This was great information as the other people Ive known who did it had it done when their child was between 6 and 9 months, so hearing someone who had a child around Jacks age was so nice. She actually sort of used her blog as a journal for her experience which was nice to read. I sort of feel like I would go that same route as we do this. So if my next set of posts seem like journal entries you will know why. For now we are in quarantine mode, Jack is not sick at all and we need him to stay that way. It's hard to stay home but its needed being so close to his date. Oh well there you have it... 8 days and counting...

And Todays Forcast...

2010-04-06T09:15:00.001-07:00

Does anyone else feel like the weather can sometimes predict your mood? I totally feel that it does and unfortunately the weather here for the past few days has been grey and dreary... I don't mind the rain, in fact when I see it I perk up a little, but when it is followed shortly by snow my mood quickly changes... and around here I tell you we need a nice day...soon The weather forecast says things will change tomorrow and with everything in me I hope it does.... We had a great Easter, Elle was so excited for it, and when she got the green light she went crazy : ) She found Jacks basket right away and she was so excited for him.... she was saying Jack come here, look, look!!

and he crawled over and I think was just really excited because his sister was. He was interested in his basket for about a minute, but then just went over to the pile of eggs that Elle was collecting and played with them...

It was the fact that when he shook them they made noise, and Jack LOVES to make noise...

Easter also fell on daddys birthday so we tried to give him some special time. He has a bad neck ache due to a little bad sleeping, and a lot of stress - in my opinion, so it wasn't the best day for him, but he got lots of loves from his little ones...
That's about where we are at, just filling out paper work for the surgery. finally we were able to go in and get Jacks blood typed, although I couldn't find out what it was.. they will tell his doctor but not his mother... so frustrating. If it was his normal doctor it wouldn't be so bad but it was his surgeon who we have never met or gone to so finding out before the actual surgery would require more work than I want to do right now... so we will wait.... We got some updated pictures done, finally... hope you enjoy them!!

Finally A Date....

2010-03-30T14:54:00.000-07:00

So after a week of waiting and about a million calls to my cardiologists assistant- I'm sure she loves me, we have got a date for Jacks surgery. April 20th will be our day... It's real now.
I've been semi-busy starting to go through some stuff that the hospital needs pre-pre surgery so there hasn't been too much time to dwell on anything, which is good. We should know in a few days that everything insurance wise is in order, and hopefully that will ease the stress off of my husband, although I highly doubt it. So I guess buckle in here we go.......
On a side note, tonight is Elles first soccer practice. The temp outside is nice, but the wind is blowing like crazy, it should be something to see.... I have my camera ready to go with pictures and I will post some, they should be ones to make you laugh. We also just had our cities Easter egg hunt, and although Elle will still not go within 20 feet of the Easter bunny she had fun getting eggs. she did so good, she thought she didn't get that many but at least she got some... That thing is over in like 30 seconds and there had to be over 200 eggs for her age group. I think her downfall was that she went right down on her knees as soon as she reached the first group of eggs, so those who would grab and egg and move on were moving on right past her and getting the rest of the eggs. It was really fun, a little cold, but I think Elle loved it. Jack just stayed with his dad and watched Elle, I was going to try to put him in his little age group, but he would have probably just rolled all over the eggs, breaking them open as he went.... We will try next year for sure!!

Just Watching

2010-03-25T14:16:00.000-07:00

Somtimes I just love to sit back and watch my kids, whatever they are doing, without them knowing that Im looking at them. Today was one of those days... I watched Elle playing with her "fancy jewerly" in her room, putting on 4-5 necklaces, a few bracelts and then to top off the outfit and ankle bracelet - who knew?? then she smudges on a huge load of lipgloss because it makes her lips shine : ) Then there was Jack, playing with a little plastic egg, banging it on the floor and then looking it over wondering why it came apart, and trying to put it back together... He caught me looking at him and from that point on he would turn his head away and then slowly bring it back around trying to see if I was still looking.... if I wanted to I think he would have done that all day, I guess I could have too but we had to take his sister to preschool.....

Scared... So Scared

2010-03-22T21:41:00.000-07:00

Today I got a call from Jacks cardiologist, with news that honestly I never thought I would have to deal with. From our first appointment we were told of what the options were to take care of the holes in Jacks heart, but the final one - open heart surgery - was one that seemed like we would never have to deal with, it was something that was never focused on, due to thoughts that it would never come to that.... but it has.
Our sweet little man is going to have to go in for open heart surgery, and typing it makes me almost go numb. The thought makes it hard to breath. I see him smile, I hear him yelling with his sister and I just can't believe it. He seemed like he was doing sooooo good after his tonsils and adenoids were removed. He is such a happy kid, he had so much more life in him so much more energy. I had no worries about the ECHO on Friday, I thought I knew what we would be told, but I was wrong, so wrong.
So here we go, our cardiologist suggested we get in for the surgery before July, as that is when new surgeons come in and she feels it is better to go with the surgeons who are there now, so she said we should do it in April, May or June. Well doing it in May or June is out due to the baby coming, so April will be our month, our month of dealing with the scariest thing I have ever been faced with. I guess part of me doesn't understand why, why does this sweet boy have to face this now, after all he already has had to go through, and everything he will still have to face in the future, why add this to his little plate? I know the why questions are useless but they are there and will keep coming back no matter what answer I give them. My eyes hurt from crying so much, but the tears keep coming, they won't stop. I think the last time I cried like this was when Jack was born, and I think back now and see and know the joy that came after those tears had passed and I'm praying the same will happen here, I'm crossing my fingers, knocking on wood and whatever else I need to do to be able to add another post in a month saying I can't believe how good Jack is doing.....

Morning Reminder...

2010-03-12T07:26:00.000-08:00

I just was reading some of the other blogs that I go through and a story was told that just made me start crying.... It was about a lady whose friend - that works at an adoption agency - called her and told her that a couple who just had a little girl with Downs Syndrome was wanting to give the baby up for adoption... The adoption lady asked if they would want to speak with someone who had a baby with DS and they said yes but later changed their mind.... The reason I started to cry was this... I know that when we had Jack there was a period of thinking "what in the world are we going to do? Why did this happen to me, and how am I going to do this? I felt that fear that feeling of hopelessness of loss, but now I look at my little boy and with all my heart cannot tell you how grateful I am that he came to us. How blessed I have been to have him in my life. And although there is that fear that creeps up every now and then, it is nothing compared to the feeling that his little spirit brings to our family. That pure spirit that connects with everyone around him. I pray for this family going through this very difficult time, I hope that they feel comfort with whatever choice they make, I know that our Heavenly Father has something planned for this very precious little girl. There are so many out there who are waiting for her, in fact there were 10 comments and 2 of the 10 were people who wanted to be connected to the adoption agency as they have been waiting for a child with DS to adopt... It was a good way to start the morning off, meaning I have been reminded of the real stuff that makes us happy....

Elle-isms

2010-03-10T08:12:00.000-08:00

So I just wanted to get down for documentation reasons some things that Elle has said lately, so here are some of her Elle-isms...

1. Out of nowhere when I was brushing her hair she said: "If anyone ever bothers my brother I'm going to tell them to leave him alone, and I'm not even going to say Please... I'm going to say Get away from my brother Now!!" It took all I had to not break down and start to cry right then, but I had to laugh a little especially at the I'm not even going to say please part....

2. While in the car she said the next one... "I love my world, my world is just so beautiful..." I love how its her world, and yes Elle it truly is...

3. She will do the next one when something she does makes something happens to what she is building or coloring or doing.. she will say " Oops, baaaad decision"

These may not make much sense but when she says them it is just either so touching or too funny...

Also 1 Jack-ism that he started to do last week was just to say "Elle" I need to record it and put it on here, because he will be waiting for her to get home from school and look at the door and say Elle, and his little tongue looks so cute being rolled up, and if he is in another room and hears her voice, he will start saying "Elle"... I couldn't believe it at first but he shows everyone around him that he is trying to get to his sister and is using her name now everyday... It's great to be a part of.

Bringing Out the Old

2010-03-09T08:42:00.000-08:00

So for the past few days Elle and I have been going through some boxes of her old clothes to see exactly what we have for our little girl on the way. It's been so crazy seeing some of the clothes and remembering when Elle wore the outfit. Looking at her now is so crazy to see what a big girl she has grown into. She is so funny looking at the clothes, she doesn't really think oh this used to be mine, it's more of an attitude of what you would see her doing in a store... she pulls something out and says "oh how cute, this is going to look so sweet on my sister" its really funny. It has also been really great to see that this little girl already has a ton of clothes... she is coming in June and Elle was born in September, but Elle grew very fast so I'm hoping this little one will stay on a more normal track and then we will be right on with all the clothes... now the only issue I see here is that they do come from the same parents, so we may find our selves in a little bind with some clothes : ) Oh well, only time will tell, and I do have to admit that I have purchased a cute little summer dress already, if you saw it you would understand... I will have to post a picture of it sometime, but for now I am controlling myself and feeling a lot better knowing that our child will not be naked... Oh and if anyone has a great way to get rid of old stains- ie spit up etc... please send them my way, there are a few outfits that have some left over stains on them : (

It's a State of Mind...

2010-03-05T09:10:00.000-08:00

Jack has been being a lot more open to others lately... We will just be passing by someone in the grocery store and you will see him start waving and say Hi, except he drags it out a little and its more of a Hiiiiiiii, too cute, and melts my heart every time. It's one of those things where you know the person he is saying it to is being changed. Some people have a surprised look on their face, they see him and they have to sort of calculate what is going on, others its just a simple easy hello back, followed by a big smile. Its those calculators I just don't get. Its the people who turn their childs head from looking at the person in the wheelchair. Why do we feel that need? In situations like this it is where we as adults should be asking our child, do you have a question about what you are seeing? There is so much a child could teach an adult, especially in situations like this. They have no fears, they have questions, they have no judgements they want to understand, pure and simple. Yet there are parents out there who feel the need to stop this, stop the lesson that could be learned, but won't because of fear or something...
So there you go, I'm stepping down from my soap box now, its just something that is interesting to me, especially now as Jack is showing he has no problem telling people hello or goodbye, or even blowing a kiss to a complete stranger, or in his case making a raspberry sound in his hand and blowing that away.... again too cute, and melts my heart every time....

MARCH... Oh How I've Waited

2010-03-02T08:55:00.000-08:00

I cannot tell you how happy I am that March is finally here.... I've always loved this month, maybe because it's that light you see at the end of the tunnel... this tunnel being Winter of course. For whatever reason February is such a hard month for me, it takes forever which is funny because it is the shortest month of the year, but it just always feels that way to me. But then beautiful March comes, and with it brings hope that Spring is on the way... now I don't get lost in the fact that just because the calendar says that it is officially spring that we will see no more snow, but its just the fact that all around you start to see signs. I was telling Elle how when the leaves start coming back on the trees and the mountain begins to look green that you know spring is here, and then she knows that after Spring comes Summer : ) So every time we are in the car she is my lookout gal. She loves summer - I'm not sure of any kid who doesn't-, but I told her spring and fall are my favorites by far.... Our March started with the temp in the upper 40's and the sun shining so it was a huge breath of fresh air to go outside and be a part of it. The weather man says a change is in store but if all that means is that rain is coming I will take it!! I love the rain, especially in spring.... so I will continue to go on and wait until spring makes herself known and then go from there... but like I said its that light at the end of the tunnel that gets me so excited!!
On a side note, if you have not checked out this womans blog you must go there ASAP.... just Google Nellas Birth Story and a blog called Enjoying the Small Things should be one of your options... of course you must read the story of Nellas birth first, and after that it will be one of your favorite blogs to read. This woman has a way with words, she just draws you in with every post, on top of that she has beautiful pictures, I hope to get a camera like hers some day, where the colors and picture are just amazing, and you don't have to be a professional!! Nella is her newborn daughter, born at the end of January, and born with Down Syndrome, to the surprise of her family. Her story of her feelings before, during, and after her delivery are just so similar to how I felt with the birth of Jack that it is crazy. Maybe I will need to post my story some day, but for now just go read hers, whether you have a child with special needs or not you will love this story....
I guess that is it, we were lucky enough to have March 2nd be another beautiful day so I will be off to enjoy it!!

Just Another Post

2010-02-24T15:55:00.000-08:00

So nothing super great has happened, we just continue to go through life. Both kids seem healthy in an area where RSV seems to be on the rise, so for now we seem to be safe.... Daddy on the other hand is not feeling well, his illness is always hard to get through because it seems like nothing helps him.. he can take all kinds of medicine but nothing works... his downfall is stress, when he gets stressed his immune system is non-existent. So we are working on that.
On to other things.... Elle is always good to go into Jacks room in the morning and give him some toys while mom is still half asleep.. they of course are on the same wake up schedule - way early - when I tend to be on the lets wake up at a normal time schedule. But I love hearing her go in there with him... every day its something different. the other morning she kept on yelling Mom/Dad Jack just said Elle, or Jack just said Sister.. Its so cute, she is his biggest cheerleader. When ever he starts crawling - not rolling- but actually crawling she just sits down by him clapping her hands yelling good job buddy, keep going, keep going, and he listens. Steve asked the other day if I thought that they talked to each other in a way we can't. and I totally believe they do, every day, whether its with words or not I'm sure they tell each other amazing stories. I wish I could be a part of that, but I guess its just one of those things that is just special between siblings... Here are some pictures we took the other morning.. Elle wanted to try on this outfit that we got for "dress ups" and she just loved it so much she almost wore it to church....I think it was the long skirt she loved that it was like a princess...

Blogging: It's a Wonderful Life

2010-02-15T13:36:00.000-08:00

Now with my title please note I am not talking about this blog in any way..... I don't love the part about posting things, it helps in a lot of ways take things off my mind, but the part about blogging that I love the most - and if it wasn't this way I probably would have stopped a while ago - but the part I love is reading what other people are experiencing.. My sister and I were talking about this, this morning, and its just so amazing to me how you can read all of these amazing stories, some by people you know, others by total strangers, yet these stories, true real life stories, can just bring out so many emotions... laughter, crying, nodding of the head in agreement etc... The stories that touch the heart, and i have read so many, just make me look at this life, and think wow there is a lot of good out there, not just the bad, and ugly that you see in the news headlines everyday, these are personal stories of something good, that help make me not worry so much about my childrens future.... stories that make me laugh and smile just brighten my day, and make me feel like all the crazy things I do, are done by others and that you should just step back and laugh sometimes... So keep those posts coming, I will do my little part to add to it, and as soon as I can master the making a comment thing I will do that too : )

Her Dad In So Many Ways

2010-02-10T08:26:00.000-08:00

So I just wanted to make a quick post on something I walked into yesterday... Just a little history to start off - When Elle goes to the bathroom sometimes she needs a little extra help wiping after going #2. Well the other day she runs past me saying "I need to go potty I need to go potty" which is nothing new, that is usually her way of letting me know, but then after a few minutes I hear her yelling for me to come help her wipe her bum, I open the door and there she is sitting on the toilet just casually looking through the Wal-mart add.... It was sooo funny, I wanted to take a picture and post it but I didn't want to really put something like that out on the web ; ) But she just looked at me like what is the big deal mom, and at that point I knew she is definitely her fathers daughter...

Could This Be Genetic??

2010-02-04T20:06:00.000-08:00

So the other morning I hear Elle in her room and after her not coming out for quite a long time I walk in to find this on her floor....

Now if you know my father you would know why I am questioning if hording is a genetic trait.... My dad LOVES finding great "deals" at the Salvation Army store, and he can on many occasions be found with bags -just like these - filled with his great gifts. Now I'm not saying that everything he gets is useless, there are many times when he surprises us all.... but then there are the times when he comes home with the 15th toaster, that only toasts on one setting -very burnt-, and he got it for the same price of a brand new one you could get at Wal-Mart....

On this day, Elle had filled a total of 9 bags with just random stuff from her room. I guess I should just be happy that she gathered everything just from her room. The funny thing is, is that 4 of the 5 bags she filled were gifts from my dad : ) I know this may not sound crazy funny to most of you but if you were in my family you would see how hilarious this really is, I mean come on she is only 4 and already starting the gathering process!!!

So We Are Having A.......

2010-01-29T14:24:00.000-08:00

It's official we are having a little girl!! Elle is going crazy still, and we told her yesterday. She came into our room this morning at like 6:30am and said Mom we have so much to do today, we have to go to so many stores and get some gifts for my baby sister.... it was way cute but way early in the morning. When I told her yesterday, she started jumping up and down screaming Jack we are going to have a baby sister, and she hasn't stopped saying it. I have to admit I was a little shocked. Pregnancy wise I had feelings like when I was preg. with Jack and Elle, so I couldn't really tell, but my mind kept saying that I think it is a boy. I guess I just imagined this little/big brother watching over Jack and just being right there, little did I know that there is another plan in store for us and our family. And after seeing Elles reaction everything felt right, and I know that this little girl and her big sister are going to be the best friends ever of a little boy that will be sandwiched in between them. It's exciting and I just can't imagine all of the new drama that will be brought into our house, it will for sure be something to blog about : )

Pictures, Its a Love/Hate Relationship

2010-01-27T12:47:00.001-08:00

So I got back from a really great trip in Colorado, tons of fun and really great memories.... I'm so proud of my dad, I loved hearing stories about him and seeing him get emotional just made my heart pound, I almost lost it a million times. But the greatest thing is all the pictures that were taken... (I say that so sarcastically) I mean I love having pictures to remeber so many things, but you see being pregnant and being me don't create any kind of beautiful shot. I used to think i looked good pregnant, then I would see a picture and be brought back to reality. My whole body blows up, like from my head to my feet, and you so see it in every picture. I see so many other women who are just the picture of perfect pregnant women, two are in my family, Denise and Erika, they both just looked the same with big prego bellies. Me on the other hand have a blown up face to match the blown up belly and in the last month or so of the adventure I have blown up legs/ankles to go with the rest of the package. With Jack I didn't think it was that bad, until a month and a half after I had him we had a family reunion which of course pictures were taken and i looked huge...still So with my dads retirement I got to be in many photo opps, which again going out I felt I was looking ok, then seeing everything I just want to scream, but such is life I guess... The sacrifices we moms make for our children, right ; )
Anyhow, that was my vent session.. tomorrow we go and find out what we are having, I know a lot of you probably would not find out, I mean we already have a boy and a girl, but I am not the patient kind, I have to know.. maybe I just won't tell anyone... yea right!

A Moment of Reflection

2010-01-12T21:46:00.000-08:00

So the house is quiet and I wish I could sleep but for whatever reason I'm not that tired... So my head starts to have just a million thoughts. The first that comes to mind is of the Medical Profession... in the past month my feelings and thoughts have gone back and forth. I get so frustrated when a "professional" just labels my son because of a diagnosis. So after stating many times that "No" that is not something my son has even though others may, he does not, they finally move on. But then as I see how well Jack is doing from this past surgery, and I don't hear what we considered a normal phlem sound anymore and he sleeps even better than I ever thought, I am just so grateful to the surgeon and staff that helped our little guy...
Then from there my mind for whatever reason moves to how I feel so many times on Sunday. You see there was a little girl born just 1 day after Jack, and for whatever reason I feel like I see this little girl every Sunday, and for a moment I think of what my little man would be like if he hadn't had Downs, how he would probably be walking, and talking a little bit and snacking on crackers or some form of "real" food. And after that brief moment, I look down at Jack and see how truly blessed I am. Here is a perfect child, who brings so much joy and laughter and life into our family. Who is so innocent and loving that I can't even comprehend it at times.. Who is here to teach me patience and what is really important in life. From there my mind drifts to my little girl, who shows me everyday how not-so-little she really is... I see how much she so adores Jack. How much she just soaks him in and how much he is in awe of her. I wonder how she will be as time goes on and she understands more about him. In my heart I know she will never see him as different, she will forever see him as her brother and that is all. I also think of this new baby on the way and how he/she will be. I pray for a protector, someone who will always be there to include and to watch out when I cannot. I have so many ideas and feelings of the whole situation, some of fear, some of how much hard work this is going to be, but then always I see the love of this family, we were put here for each other to learn from and to support and as I see us from the outside I see what a wonderful gift I have been given, with each different personality comes a piece of our puzzle that fits perfectly... We were meant to be together for a reason and at the end of the day I can't sleep sometimes because I am so overwhelmed with gratitude....

One Thing At A Time...

2010-01-11T15:04:00.000-08:00

So I have finally taken down all of our Christmas Decor.. I have been so tired that every time I would start I would only get a little done and then I was done for the day : ) But it's down now and life is good.... This weekend I will be going to Colorado for my dads retirement party, and the kicker is that I will have no children going with me - except for the one in my belly... The thought of that is so weird, as I have always had at least one child with me, so not having either one of them is just going to be really strange. I know Steve will be fine with the kids, but I also know it is going to be hard for him, so I guess I will try really hard to make the beginning of this week easy on him. Honestly though it is going to be hard for me too - I will miss them all to pieces!!

2010

2010-01-04T08:54:00.000-08:00

So pretty much after Jacks surgery our house went into Zombie mode, it was a long 2 weeks of recovery, with Jack being just the sweetest little guy coming through like a champ! Oh the difference in him now is like night and day, and thinking back to all the stress and craziness it seems like a million years away, so as the new year has come it seemed to me like a big breath of fresh air, like I felt renewed and ready for this next year. I haven't gotten on the ball and made resolutions, I sort of feel like if I do I need one to be to make sure I keep my resolutions... I make them and then forget about them after a few weeks or months have passed and life has rushed in, but then maybe if I made other types of resolutions like to make sure to laugh more this year or make my family laugh more then those ones for sure I can mix in with life.... so I guess I will think on that maybe in the next post I will have something for you... I will for sure post pictures of our fun times these past weeks : )

Early Christmas Gift

2009-12-16T19:38:00.000-08:00

So I got one of my Christmas Gifts early this year.... A happy healthy boy, minus tonsils and adenoids : )
Oh Tuesday lasted forever (imagine me saying it like this for - ev -er) and I don't think my heart has ever gone up and down so many times in such a short period of time... We arrived at 10:30am got checked in and all the fun stuff you get to do at the begining and waited for the nurse to come in...

Here is Jack waiting so patiently.... does he look like he's biting his nails - he so gets that from me ; )

Finally she came in and gave us some last minute instructions and off we were to the pre-op waiting room....

This is Jack blowing everyone a goodbye kiss

Once there we were informed that they were running 1hr behind, which turned into 1hr 30min behind... now mind you that our little man could not eat any food past 6am that morning so by 12:30pm he was getting a little frustrated... finally group after group of nurses, doctors and everyone else came and gave us instructions and it was time.... I had to hand my little man over, it was really hard and the look he gave us as he was walking down into surgery was Mom, Dad what are you doing??? (1st heart drop)... At that point I was starving, usually I tell Elle its the baby that needs to eat but today it was 100% me and the baby was just lucky to be along for the ride... well they told us that the surgery would take 40-45min so we busted it down to the cafateria where I loaded my plate with things from everywhere, when we finally sat down to eat i felt like I was eating so fast that half way through the whole thing I was like oh no.... Im going to have to throw up... looking back it was not really a great decision to try to make up for 2 meals in like 15min... so I ran back up to the waiting room and in about less than 5min our doctor walks in... Steve hadn't come up yet but after the doc sat down and assured me that everything went great and the Jack did so well, Steve came in and we were off to the PICU waiting area... Jack was going to have to stay in ICU for the night due to his hyper pulmonary tension, they wanted to make sure he would be ok with everything that happened and any medication that was given... so we were told that once they got Jack settled that we would be called back... after 45min I was freaking out.. what in the world was going on, I went and called the desk and they were like oh yea come on back... I ran and got Steve and we were both just relieved to see our little man that we didn't have enough in us to get as mad as I wanted to... so we go down the hall turn the corner and I see the sweetest little boy sitting up not too happy with 2 nurses that are trying to make him smile... we run in and I just had to grab him... > Heart went crazy< Oh the magic in a mothers hug, I was loving being part of that experience.... Steve and I just passed him back and forth.... He loved it, I really think he got some sort of anxiety over us giving him away earlier that he really needed some security... So it was the best Christmas present and my heart just swelled even more knowing that we had so many friends and family out there with us on their minds.... your prayers and thoughts were felt so many times that day, and they were sooo appreciated...

It's Almost Time

2009-12-11T08:08:00.000-08:00

So on Tuesday Jack will be heading up to Primarys to have surgery to get his tonsils and adenoids out... He has really bad obstructive sleep apnea, so we are trying the only thing we feel is an option to try to help free up some space in his airways. The doctors told us of other things we could do, but they were a joke... His heart and lungs have a lot of pressure on them so if there is anything that will help relieve this pressure then that is a really good thing. I have read stories of kids bouncing right back from this, but then i have also read stories of kids having really hard times... I know my little guy is a fighter but I'm really nervous about this one. He will be in the ICU the night after just because the doctor said that they need to monitor how he will respond to the pain medication so that is not really settling to my mind... So..... any good thoughts and/or prayers that can be sent in Jacks direction would really be appreciated, because this little guy deserves nothing but happiness..

Mind Put At Ease

2009-12-05T14:55:00.000-08:00

So yesterday was a good day for a few reasons... The first was that I found out that I am not the only one who has a daughter that can go from an Angle to a Devil in a snap... That her angry looks at me and the things she says is something that other mothers experience.... It really was a huge relief to find this out... There have been days here and there when I think who is this child and where did my little girl go? She just turns straight up nasty as I tell her. I throw out my threats and at some point it all calms down. Then comes the thought of what kind of mother am I to have a child go crazy on me like that, and like I said above I found out that I'm like every other mother out there with a 3 or 4 yr old child... : )
The other experience was with little Jack Attack. I took the kids to the Festival of Trees which is where people donate decorated trees usually in memory of someone who has passed, and then the trees are auctioned off and the proceeds go to Primary Children's Hospital. Well, we were over in the craft section and Elle wanted to paint an ornament. So we go over to the table and there is a young man who had Downs sitting there, helping his mom run the booth. Well his mother saw Jack and introduced me to her son. I think she said he was 35, but as we were talking a little, the sweetest thing was happening between Jack and this young man. They were just sitting there staring at each other, both with the biggest smile on their face, it was as if they were saying "I know you, how are you doing?" It was such a sweet moment...
Then as the kids and I were walking around looking at the trees, I saw this younger girl who looked just like my sister Maureen. I stopped her mom and asked if the little girl had Ruben-Stein Tabies - which is what Maureen has - and she looked at me stunned for a moment later she said it was just because she had never had anyone ask because it is so rare, you just don't hear the term, but then said that yes she did have it. We talked for a bit, and I think the thing that got me the most was how alike they were... Their movements, their looks, it was just really crazy. One thing her mom asked was if Maureen was very loving? And I was like oh yeah, she loves giving hugs to everyone, and the mom said that her daughter did too. It was just such a testimony of the spirits in these wonderful children. There is nothing, and I mean nothing but love in them, and that is all that radiates from them. I just wish that everyone would see that first, before anything else... Thats really all that matters after all....

This Christmas....

2009-11-30T15:15:00.000-08:00

So I have a moment to do a quick post.... Elle is sleeping and Jack is busy playing with his farm. It seems like just yesterday i was so excited for Thanksgiving to come and now it is gone. Time flies by so fast I can't believe it. I'm focused on enjoying the season this year. I love so many things about Christmas but it seems like every year I have this let down because I was too busy with this and that, and by the time it is over I'm left with the feeling that I didn't enjoy it like I wanted to. So I'm focusing in and ready to just be in the feeling. Elle started me off the other morning, we were lying in bed and she rolled over and said "Mom, you know why I talk about Christmas so much?" and I said why? and she said "Because I LOVE Christmas". it was too cute and the way she said it just made me laugh. I love too that she loves Christmas, I just need to make sure that she understands the meaning behind it. It is exciting to see her eyes light up when she sees all the decorations going up, as well as her ideas on what gifts she is going to give people, and honestly what gifts she hopes she is going to get. So in the end I think having that Christmas feeling will be a little easier with my little girl around, because you cannot deny the spirit of Christmas when you get to experience it through a childs eyes...

On To Winter....

2009-11-16T21:29:00.000-08:00

So I need some help... As winter approaches I start to get really worried about how I am going to keep Elle occupied without a TV on, so I am reaching out to anyone who may see this to get ideas on what you do when kids have to stay indoors, that can be done with the TV off. Now during the holiday season this is hard for me as I LOVE all the little Christmas movies so I give in due to my own want to watch them, they just bring back sooo many memories. So many times I had to make sure I was home and schedule my night around when one of the Christmas movies would be on one of the 4-5 channels we got on our TV. Yes during my time at home we got 3 sometimes 4 local TV stations and the wonderful PBS channel, of course as soon as I left for college, the parents get a dish-Thanks Mom and Dad... Those were the days... but anyway, seriously please send in some ideas on things you do, I want to make Elles time indoors just as fun as when she is free to run crazy outside : ) On a side note... I know this song is not that new, but every time I hear the song "I Just Call You Mine" by Martina McBride, I start to tear up because it sooooo reminds me of Jack, I know many of you might think Jack not Steve, but yes... it reminds me of my little man Jack. I'm sure its meant for a hubby or something like that but the words just scream Jack to me.. you'll have to listen to it sometime, oh and Steve don't worry there are other songs, that are just as good that remind me of you : ) hahaha I laugh because I know he really wouldn't care : )

8 Years and Counting.....

2009-11-09T08:36:00.000-08:00

So it's here... today is our Wedding Anniversary and we are celebrating 8 years! We sometimes joke that it's actually longer than that due to the fact that we dated forever so in reality we've know each other for more like 12 years, crazy!! Today I keep thinking about the first time we went to Colorado together. It was in the beginning of October and the weather going over was fine. That is always the big issue the driving conditions... well anyway we get there and I think we picked up my brother Matt and went into Pueblo where my mom, dad and sister Maureen were. We went to Crackle Barrel for dinner - my dads favorite and at that point it started to snow outside... by the time we were done eating the snow was falling pretty hard but the plans at that point were to go to the Harvest Ball - the Stake Dance. Getting there was a little scary as the roads were turning bad, but once we were finally there it was hilarious as there were very few people due to the weather, so there was music playing but no one dancing, our group was by far the biggest, so if we weren't dancing it was like an empty dance floor / gym. My dad made some phone calls and we found out they had closed the highway, so we were not going to be going home. We decided to make our way across town to a friends apt. where I think we were thinking we would just stay the night. We barely made it there... yes this wasn't a little storm it was a full force BLIZZARD!! So it turned out that night and the days to follow there were 6 adults and 2kids staying in a 1bd apartment. I was shocked the power never went out, but the next day, Saturday, Steve and my little brother Matt decided they would try to walk to some stores - what they were thinking I'm not sure, I guess they were just trying to get out of feeling claustrophobic... It was still snowing and Steve did not have any kind of snow clothing at all, he had a jacket/coat and I think some running shoes? When they finally returned they told of how they went to the hotel lobby across the street to see if there were any snacks there and of course the machines were empty, so they continued on across the other way and found the one and only store that was open, they bought a shovel and some snacks and I think Steve got some socks or something... they said that as they were walking Matt was stuck a few times up to his hips in snow, so Steve had to dig him out.. it took them forever to get back. Then on Sunday we were still waiting to hear if the highway would open so we were watching the news and my mom decided to put together a little family home evening lesson, on ETERNAL MARRIAGE... I was horrified, this was Steves 1st time meeting my family and my mother does that... i just rolled my eyes the whole time. We watched a Bronco game, where Steve got to see more of my family in full force as we love the Broncos and finally, we were allowed to go home. Getting up our road after all of this snow and no one had really plowed was an experience. I was very grateful for our Jeep and 4-wheel drive that day..... So I'm sure after that experience Steve was thinking what did I get myself into.. but here we are. It's been a crazy road, but amazing. Besides when we were married my favorite moments were when we had Elle and Jack. With Elle it was just the look on Steves face as I was delivering her, and then after as he held her for the first time.. oh it was something to see. Then of course when we had Jack, this was a little different as we were told of his diagnosis right after delivering him so the first few days were filled with tears and questions, and I know Steve was struggling with a lot, a ton, but he was there to comfort me and helped me get the needed jump start to this whole new world we would be experiencing with Jack. I look at Steve now with the kids and I just can't give it justice with words. He is an amazing dad, and he loves his children more than I can believe. In the end I couldn't imagine going through this journey with anyone else!! Happy Anniversary : )

November and the Blue Button...

2009-11-03T08:38:00.000-08:00

So November is here... Christmas decor in every store, snow on the way-possibly Sunday, and thoughts of Thanksgiving dinner in my head... I can't wait!! Hopefully I can get a post in before Jack rolls over to the computer and turns it off : ) He is a fast one, and gets to where he wants to go, not by crawling - which is by choice, his choice- no instead he will roll, and it is so interesting to watch him go... he will move forward if needed but if there is a way to roll to it he will do it. He is very quiet and fast so if I'm not fast he gets over to our computer which sits on the floor and he will push the blue button and I can do nothing but watch my computer tell me its shutting down... But back to November... I love thinking of the smells of Thanksgiving morning, and even though it's crazy to see Christmas decor in the stores I love that as well, it gets me really excited. I love the first "real"snow, the kind that is big and fluffy and covers your grass... but then after like Jan 1st I'm done and would love to have spring come for the next 3-4 months, I guess living where we live doesn't help much so I will just have to go with what comes my way... November will also bring my 8yr anniversary, which is crazy to think about even crazier to type, but that is where we are at and looking at everything it has been a wonderful, unbelievable ride, I will have to post more about it once the day comes but for now I have to be going as my little rolly polly is making his way over, and Elle is yelling "He's coming after your computer!!"

Halloweens of the Past

2009-10-28T19:56:00.000-07:00

So I was sitting here tonight with my daughter watching It's the Great Pumpkin Charlie Brown, and all of a sudden I started remembering what fun Halloween was for me when I was younger. My favorite memories were of the Halloween parties that we had at the Church. Everyone would get a room to decorate or set up for some kind of Halloween carnival type thing... the room the comes to my mind first would be the "Operation Room" Where you had some people behind a white sheet with a light shining towards you showing you their shadows during their "operation" and the poor guy on the table who was being operated on who would always lose his guts and so much more... It was really creative and I swear to this day there were eyeballs in the bowl of stuff that I had to put my hand in : ) Oh it was so fun and innocent in a way. I'm sad that today it gets taken to a level that loses that innocence and so you are limited to what you can do. Then there were the days of being so jealous of the high school kids who got to stay out late and have egg wars in the street... yea that is when you threw eggs at each other, not cars or houses... I think when I was actually old enough to join in I threw my eggs at the actual street just for the fun of it... We were pretty wild back in the day... So there you have it, some memories of the past that when I think about it were so much fun!!

Happy Halloween!!

All About Elle

2009-10-17T20:53:00.000-07:00

So looking back over my posts so far I see a lot of Jack News, and it has sort of made me feel a little bad. I want our blog to be about happenings in our family and I guess that lately there has just been a lot of news to report on Jack. It is important to me to have posts about our different experiences with Jack because as someone who went straight to the Internet to find some sort of direction when we first had him, I know that reading other families blogs about their child with Trisomy 21 helped me in so many ways feel prepared for this journey. So by reporting everything about what is happening, I feel that maybe someday, someone might stumble upon our story and feel some sort of relief.

But that being said I wanted this post to be all about Elle.

Where do I start with this one?? She just turned 4 but you would never know it. I love Elles personality, her determination, her love of family, friends, school and singing. I even love the attitude that she is full of, even though as she is stomping away saying "Fine, Forget It" and I'm about to flip my lid, when I look back at it all, I can smile. I'm so grateful that even though she will fight with me about a decision, she always will do the right thing in the end. I love her curls and how she is very particular on the way we do her hair. Her love of accessories is something that makes me laugh every time I see her. She loves jewelry and if your not fast, she may walk away with a necklace or bracelet : ) If you could see this picture up close you would see she is wearing earrings, 2 bracelets, a necklace and a ring...

Finally she is such a loving sister. Her interaction with Jack, how she helps me with him and just how proud she is of him is something that I have no words for. It is a beautiful thing to watch. Even if he is pulling her hair for the 15th time in a row, I have never seen her get angry with him. She just says "Jack you need to be careful."

My mother would always tell me that "One day you will have a daughter just like you" and some times when we are butting heads and I'm about to pull my hair out, I know we do have some things in common. But, there are other times when I just melt at how sweet she is, so I'll take her, the good and all the rest!!

Parenting.com

2009-10-14T20:35:00.001-07:00

On Parenting.com they are doing a special photo gallery in honor of National Down Syndrome Awareness Month
So you HAVE to go to this link:
http://www.parenting.com/gallery/Child/A-Special-Joy-2009-Kids-With-Down-Syndrome-Round-5
That's right Jack has made it to the big time.... I was shocked when I saw he was the 1st one of this group because his picture represents the groups : ) All of the photos are too sweet. If you are having a bad day, it will only take 1 photo to change your mind. One of the other moms who posted a picture said it best when she said "Children with Down Syndrome are more like typical children than they are different" Share it with all your friends... I told Steve the other day that the NFL should not only be wearing pink in honor of Breast Cancer Awareness but they should add blue and yellow as well....
Oh yea, and a quick update on Steve... he had/has the flu - normal but hit him hard flu- added to it was a sinus and kidney infection. So to say the least he has been pretty beat up the past few days...

A Princess Again??

2009-10-13T21:58:00.000-07:00

So I have gone back and forth with Elle on what she is going to be for Halloween. She keeps telling me she wants to be a princess, the problem - for me - is for the past 2 years she has been a princess. So I have tried and tried to get her to change her mind... Well we found the cutest costume - not a princess - and I just really had to try to get her to change and as luck would have it she decided she would.. Here is your clue as to what she will be:

Jack Attack is going as a lion so it will go right along with what Elle will be... So I guess all we need is a Scarecrow and Tin Man...

Yesterday Elle, Jack and I went to the pumpkin patch for a Halloween party put on by a charity organization that we are involved in. Steve was sick - very sick - and was at home in bed... not sure what it is yet, but we will know more tomorrow... but anyway so the kids and I got to go and we had such a great time. We actually went to this farm last week to get our pumpkins, but we ended up going on one of the coldest days in October so far.. so we only stayed a short time. Last night was perfect.. The weather was great so we were able to enjoy all the different activities. It was so much fun!

Here we are on the trick-or-treat hay ride... Elle loved having candy thrown into the ride, and Jack was just trying to figure out who this guy was that was taking his picture : )

Way Better Than Expected

2009-10-09T08:41:00.001-07:00

So yesterday was Jacks ECHO and to say that we were relieved would be a huge understatement.... I don't know if we were just warned to expect the worst or what, but everything has turned out so much better that we were expecting. Jack still has 2 of the 3 original holes in his heart, but 1 hole has tissue by it which is a sign that the heart is trying to repair itself, so we will just be watching that one for now... and with the other hole it is 2mm which the cardiologist said is small but we won't do anything for it until we go see an ENT about his tonsils and adenoids. Meaning Jack has high pressure in his lungs that could be due to the hole but also could be due to his airway having restrictions to it -ie- his tonsils and adenoids are too big and would need to be removed.... Thank you to everyone for all the thoughts and prayers. Our next hurdle to cross will be "What is Elle going to be for Halloween??" : )

National Down Syndrome Awareness Month

2009-10-06T22:17:00.000-07:00

October is National Down Syndrome Awareness month so I wanted to share the following in honor of our little man....

My face may be different but my feelings the same.

I laugh and I cry and take pride in my gains.

I was sent here among you to teach and to love.

As God in the heavens looks down from above.

To Him, I’m no different, His love has no bounds;

It’s those here among you in cities and towns

That judge me by standards that man has imparted,

But this family I’ve chosen will help me get started.

For I am one of the children, so special and few,

that came here to learn the same just as you.

That love and acceptance, it must come from the heart.

We all have a purpose, though not the same start.

The Lord gave me life, to live and embrace.

And I’ll do it as you do but at my own pace.

-Unknown

We love you Jack!!

Was it a Sign or just a Coincidence?

2009-10-05T08:42:00.000-07:00

So as you all know our little man Jack has been getting check ups and such on his heart, and just this past week we were told that there might be issues. This was news to us as this whole past year we had been told that things were great, yes he had holes but they were healing on their own, and in fact 1 of the 3 was getting really close to closing. So we were shocked when we went in and were told that we were going to have to do some more testing to see what is going on. Well I left the hospital in a sea of emotions, which I'm still trying to figure out which one to focus on, but the other day I was going through a drive through at a convenience store to get a soda, when the guy helping me -who was probably around 17-18 - asked if Jack had Down Syndrome.. he could see Jack sitting behind me.. I told him yes and the guy went on to tell me how he had a 5yr old brother with Downs and how much he loved it all and just little stories about his brother.. It was so great to see how happy this boy was he was just a big smile from ear to ear.. well after he handed me my drink he asked about Jacks health. I told him we had thought everything was fine but that we were going in to look at his heart. He said that his brother had to have open heart surgery at 4months old but that he is just doing great today he said his brother is probably close to the same size as Jack.. That just so freaked me out I mean I know its pretty common for children with Downs to have heart issues which many require surgery but it was just the timing and everything... But anyway the cutest part was the boy asked if he could give Jack a sucker... which was so sweet but my little guy is a VERY picky eater to say the least and the look on his face if he was to try a sucker would just be way too funny...So we had to pass but just the actions of this boy were very sweet.. It was a good moment.
Our countdown to the ECHO is 3 more days... Keep your fingers crossed and our little Jack in your prayers...

Is It Really October??

2009-10-01T19:50:00.000-07:00

I can't believe that October is already here!! It's crazy how quickly time flies by. I love this end of the year as you get Fall, Halloween, Thanksgiving and Christmas... one after the other.. The first snow is always exciting for me as well, although by the end of January into mid February I'm ready for it to be over : ) But it makes me want to take a minute to capture some memories that have been on my mind lately....

* I love the way Elle says Halloween - it sounds more like Hallow-queen... it is so funny and I know I should probably correct her but I just love the way it sounds so I can't
* Elle also has a cute way of saying its time for bed... she calls it bednight
* Jack amazes me with his smile... when you look at him and he smiles it is just so innocent and true.. I don't really have words to explain it.
* Watching Steve with both the kids is a really good feeling. It melts my heart. I think seeing any dad with his kids is a great thing but to see your husband, in a "Dad" moment is so amazing... even when it is just a Saturday morning sitting on the bed.
*Finally I wanted to show what a cute side profile Jack has... the problem is I have had a really hard time capturing it.. so I've posted the best one I've been able to get so far...

New To This Blog Thing

2009-09-29T22:31:00.001-07:00

So here we go.... I decided to try out blogging for a bit.... Maybe someday I will feel a little bit more comfortable with this whole thing.. but for now this is a start... I will try to go back and add some posts to bring everyone up to speed on the happenings in our little family so I guess that is something to look forward to adding. So there you are... I can't wait for this new adveture of blogging hopefully it will be a good way to record memories of all the craziness in my life : )