Progress

First off so much has been going on in our life especially in regards to little Colton and his health. We have gotten the all clear on his heart, kidneys, and bladder...will do follow up ultrasounds in a year just to make sure. Got a call today that the Developmental Peditrician had a cancellation (been on her wait list for 2 months). Reviewed our case with Early Intervention (EDIS) and then saw the DR. To say I have been blessed by having these ladies in our court fighting for Colton would be a drastic understatement. I have to say that the team of DRs working on him right now are all top of their departments and have great bedside manners.
So Dr. Cooper made a list of all of the conditions/concerns currently facing my son, she had already read the Early Intervention report and talked with our case worker prior to the meeting, and then proceeded to do a physical evaluation. She then started listing off the tests she wanted to be run and wants them done before I go back to UNC on 10 March. We are seeing 4 DRs that day so having all of this information will help them even more.
Seeing the actual numbers placed on my sons developmental delays was a bit disheartening though I think I already knew it. The frustrating part is he has good days and bad and depending on the situation or location of the appointment it can seem like there is literally nothing wrong. He's had such a rough start to life we really just want to make sure that we are not overlooking something. So basically my poor baby is going to be undergoing a lot of testing over the next few weeks to months and until all the results are in we don't really know what we are dealing with. All we know is what we see...some tasks are not easy for him, he startles easy and doesn't handle busy situations well (in our house that is a problem lol), and things like his congestion we haven't figured out a cause and want to make sure it isn't affecting his lungs or ears. I will continue to work with his motor skills and neck strength at home. We will be seen weekly by physical therapy and early intervention so they can give me new things to work with. Thankfully I have the happiest and cutest little guy a mom could ever ask for. He's been such a trooper through all of this and wins the hearts of all the nurses and doctors he meets.

On a side note two of the doctors we deal with have agreed to take on the girls ADHD issues so that will hopefully help make my life a little easier very soon.

ENT appointment

Today was a very stressful day. I woke up late causing the girls to be late for school, had to rush Evey over to a friend's house and then drive up to Chapel Hill. Well I admit it...I actually got lost. Had no idea how to find the place I was looking for and had already been driving for 2 hours. Get there and get checked in. They finally call us back to do vitals and they just weigh him clothes and extremely heavy diaper. They put us in this little tiny room. The Dr comes in a few minutes later and asks what is going on. I explain my concerns, she looks in his ears, nose, mouth etc... then she goes back out to read his surgical reports from UNC. Comes back in fills out two pieces of paper and says she wants to do a group evaluation on him so she will schedule some appts for us at UNC for March 10th. I was floored...really I drove over 150 miles round trip for 5 minutes of your time, to make my March 10th day an all day extravaganza! These days are long enough with one appointment but to have to see 3-5 different doctors?!?! Okay glad they are working together as she wants our current Surgeon, Pulminology, GI, and ENT to all work together since he has so many different issues already. I didn't get any insight into her thoughts...and I really don't like feeling like I'm being rushed out of the room. Its okay though, because when I get all those doctors together in one room we are going to get these issues addressed!
Also I think I forgot to post, but Colton had his follow up Cardiology appointment and it went really well. So well I could have cried...it appears the VSD he was born with has closed on it's own!!!