Thursday, April 18, 2013

Getting Closer To Closure

I feel like it has been so long since my last post. Every time I sit down to blog, I get interrupted. It's just been a busy week! I think Camden is finally getting better and he just has a lingering mucousy cough. I hope this weather change today doesn't aggravate his (or my) breathing. I wish it would decide to stay one temperature...but it's Texas. We did have our first therapy session least that's what I think it was. Cindy (our SST) came out and I guess it was mainly to evaluate where Camden is at right now developmentally. They base his skills on a 2.5 month old since that's what his adjusted age is. It's crazy because I never know when to expect him to reach milestones since children with Ds are developmentally delayed and because he's a preemie. Patience...patience...patience! It's a quality that I'm slowly acquiring these days. So, for a 2.5 month old she thought he was pretty much on track and was very impressed. Of course, I don't think a 2.5 month old "typical" baby does much, so I don't know if that's saying a lot. He did show her how he could hold his head up some...but he definitely can't do it for long periods of time. Tummy time will be our biggest thing to help develop these muscles. He did roll over front to back and she thought that he looked like he was using the right muscles to do that's good news! The whole session lasted for about 30 minutes because Camden quickly let us know he was done. I asked her what I could work on to help him open his hands more (he still keeps them fisted a lot) and just in general what we should be doing. She responded by saying that that would be something to ask our PT about. Uh...okay. So...what exactly was this session all about? Supposedly the SST works on overall development, but...I don't even know how to finish that statement because I don't understand what they do still. The PT finally called me to set up an appointment for next week and informed me that she is the only PT for 2 counties and only works part time, so her schedule is limited. I still have not heard from the OT. This is becoming so frustrating. I'll give it a few more months and if it continues going this way I may look in to private therapy.

Ms Cindy helping Camden roll over  from back to front

Trying real hard to hold his head up!

Really mom...really!
Carter wanted to take a picture when we were done.
He did a good job!

I did buy this book because it comes highly recommended from a lot of parents in the Ds community. They also make one for fine motor skills and speech. I haven't looked at it yet, but am excited to get started!

We had our monthly cardiology appt today with an echocardiogram. For those of you who don't know, Camden has a large VSD. It was originally thought to be moderate, but after a couple of echos that does not seem to be the case. A large VSD almost always requires surgery, but Camden's situation is a bit different. He has this random tissue growth over part of the hole making it a restrictive VSD. This prevents the large shunting of blood between the two ventricles...which is a good thing. Dr. Case has always felt confident that this tissue will continue to grow as Camden grows, eventually covering the hole. Today's echo showed a little more tissue growth over the hole which is what we were hoping for. The shunting of blood is even more restricted now and he still believes that the tissue will continue to grow. I love Dr. Case because he has sat in on every echo we have had showing and explaining everything to us. Not many cardiologists do the same. He told us to come back in 2 months and we will do another echo. Yay!!!! Two whole months! That's exciting considering we were going every 2 weeks and then every month. I take stretching out the appointments as a good sign! We also weighed our boy today and he is now 12 pounds 8 ounces! Apparently being sick for two weeks did not slow him down. I can tell my baby boy is growing up because during the echo he was so active and smiling making it hard to get good pictures. Before he would just lay there and kind of fuss. It was cute for all to see!

They don't allow pictures at the cardiology office...but
I had to sneak one in!

I'm so blessed to have such a loving and forgiving 3 year old son. I have been so high strung this past week and on a short fuse. I'm just tired and worn out and sometimes I take it out on him by raising my voice or getting impatient. He will just look at me and say "momma, you don't have to get's okay." I love that sweet boy so much and he can brighten my day in less than a second. I'm so glad that we are taking a mini vacay to Lake Tawakoni for the weekend because our family needs the rest and relaxation!

Our thoughts and prayers go out to the victims and families from the Boston bombing and the West, Texas explosion. Two tragic events only within days of each other and both with unimaginable loss.

He loves his baby bubba!

Carter decided he wanted to sit in the rock n play.

We really didn't buy all that dog food!

Camden will watch Carter all day long.

He was naked a lot for a couple of days cause we
were too cheap to turn the AC on when it was 90
degrees outside!

I just love watching him when he sweet!

Carter walking in his daddy's shoes.


  1. Great news about his heart! Sending positive thoughts your way that it will continue to close and get better. Love the photos of the brothers together----so sweet!

    1. Thanks Crystal! It's always refreshing to get good news for a change!