Tuesday, January 29, 2013


No I'm not crazy I promise....  If you only knew what these pictures meant...  Finally and not only finally but in Grand Style my boy was fully just feeding himself...  This is a HUGE victory, and he was ready, and very smart... I mean if someone is going to do everything for you why not let them?  He knew that this whole time....  Silly little man...
So when I put my foot down and laid down the law (it was very serious, and very scary), he casually picked up the spoon and was like whats the big deal....  I on the other hand, was like the paparazzi and that one crazy person who is always cheering on the team (aka screaming) at sports events -I have a picture of my mom in my head for some reason ; )...
But not Jack, he was just chillin,  picking a little bit of yogurt here, some applesauce here, looking at me like Mom whats the big deal, but posing for pictures at the same time.  It was such a great thing to watch, and be a part of... seeing Elle jump up and down for him and hear Marley say in her cute little voice,  "Jack you are so awesome" lol..   It was one of those moments that just hit you,  and we will chalk one more victory up on our scoreboard of Life....

Monday, January 7, 2013

What to do What to do?

So I am finding it is time to get Marley signed up for preschool next year....  which is freaking me out a little...  I can't believe she is there, at that age...  every fall would come and i would be there goes Elle off to school, little Jack man had his preschool and my Marley was home with me...  The thought of that changing is so weird.  And to add to it I have the decision of what to do with my little superman.  He turns 5 in May, but I will not be putting him into Kindergarten next year, as we have a ways to go and are not close to being ready...  But I need to figure out where to take him.  Sometimes I feel like when he goes to preschool now its just a few free hours of  babysitting.  Not that I expect him to come out reading the dictionary, but I want him to be challenged.  To really see what he can do, because I know he can do more than he is showing us... he just wants everything to be on his timeline... and that is hard for Mom.  So i have gone back and forth on where to send him... do i put him in the same spot Marley will be, even though I have no idea if they have experience with a special needs child, and will he get the extra therapy he needs there,  or do I continue with the school district preschool, where it seems like each year he is in a different school with diff therapists and teachers.  Oh I don't know and it is something I want to just ignore and hope it will go away, but is also something I know I need to face up to and deal with...  To top things off I also feel the January/February funk coming on.... I think its mainly because it has been so incredibly cold here.. Every day is so so so cold... and then its also smoggy, and is not fun to think about breathing such ugly air...   We sold our house at the end of November, and can't even start the new one until probably February due to the cold weather... so that makes me miss our old home, and the views we had, i had to drive up to the old neighborhood the other day to drop off something at a friends and I had Jack with me, and it  broke my heart... he started laughing and like dancing in his car seat, his eyes were so big and he was looking around everywhere, he was so excited to be back there, I think he thought we were going to the house because when we were leaving he got so mad, he was kicking the seat and giving me this look, and he was so sad,  i was totally not expecting that, but understand how he was feeling, we all loved that house so much, it was just time...  Hopefully things will start to look up and the cruddy air will clear and show me what in the world I'm supposed to be doing...

Sunday, January 6, 2013

Houston... We Have a Problem

So I think people say that the first step in fixing a problem is admitting you have one, so here it goes.... I have a really hard time keeping this blog updated... looking at my last post almost 2 years ago is a perfect example...  Whew! glad i got that off my chest.. so here is to hoping i can do better this year...

Monday, May 9, 2011

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.......

Thursday, April 7, 2011

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!!!

Thursday, February 24, 2011

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.

Friday, January 28, 2011

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....