Catch Up

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

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

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

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

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

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

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....