Tuesday, June 1, 2010

The Children's Hospital of Philadelphia

Last week we drove out to the Children's Hospital of Philadelphia for an assessment with the Trisomy 21 program. When Colin was just a newborn, we had debated whether or not we should go for an assessment since we were already involved in the ITAP (Infant Toddler Assessment Program) at our local children's hospital. As many of you have read, we have not been happy with this program and so we were looking to see what else was out there.

We HAVE come a long way because back in the beginning, I used to think that we needed to be inolved in everything possible because it was what Colin needed. However, I have slowly learned over time that we already know what Colin needs and we continue to do those things on a daily basis. We don't necessarily need to be enrolled in every single program for Colin to do well...he is doing so great already with our EI team! However, I was still interested to check out this program and this post is an account of our experience...

...which was a GREAT one!

I don't want this to sound superficial, but appearances when it comes to places that are providing medical care and the like, do mean a lot to me. The rooms were so nice and clean and updated and the staff was so friendly and helpful along every step of the way.

We arrived early and were taken to the back very quickly (which was almost too quickly for us since Colin hadn't even finished his breakfast yet!). In the 1st room, Colin's vitals were taken as well as some measurements that are pretty standard for any doctor visit. The woman was so friendly to Colin, which also was so important to us. When she was finished, we waited for a short time for the developmental pediatrician, Tahira G. Adelekan to arrive.

Colin was such a good boy and in such a great mood throughout the entire visit!

When Dr. Adelekan walked in she immediately went right over to Colin and said hi and talked to him. She was so easy going which allowed us to relax and feel comfortable with her. She loved Colin and his reaction to her was the same.

She performed some of the "testing" that we have already seen before, but this time, Colin got to sit independently at his own table!

As you can tell, he was so happy..."look, my own table just my size!" He didn't show her everything that he could do, but it was ok because he was enjoying himself! What we loved about Dr. Adelekan was that she was so incredibly positive about the things that Colin COULD do and spoke less about the things he wasn't quite doing yet.

That in itself is so important for Chris and I. I couldn't help but smile and just feel proud of Colin because everything in that room was so positive. It makes a huge difference! After the "testing", a physical therapist came in and discussed with us the things that we were working on with Colin. She was so happy to hear all of the work he was doing, and didn't even need to do an assessment herself. Throughout the entire visit, Colin was very social and happy and I'm sure it was because of the comfort level in the room!

The recommendation was to follow up every 6 months so that they can continue to monitor his development in all areas. This also includes keeping on track with the check-ups with some of the specialists, blood work, etc. We plan to continue doing this and now we are officially done with the other program.

Afterwards, we went upstairs and met with some researchers who are conducting a study through CHOP that will eventually be used to change the growth charts for individuals with Down Syndrome. You can read an article about this study by clicking here. We are happy to be involved and our involvement is actually quite minimal. Every 6 months, Colin will have several measurements taken including height, weight, head circumference, spine length, body fat assessment, etc. These measurements will be used to change the charts in the future.

To finish our day, we went to my high school softball game for the state sectional group III championship. It was closer to Philadelphia than it was to my school so I went to be supportive and be there in case there were any injuries. Unfortunately, we lost, but Colin had fun!

He was such a good boy playing with his toys while Daddy did some work...

His favorite thing was watching the girls warm up before the game!

They had the best view of the game!

10 comments:

Wren said...

I love the first picture of him sitting at the table...he looks so proud...that smile is priceless!

amy jupin said...

kelli, we have done the same thing with ben but at children's hospital in nashville. there is a totally different vibe there and i think it's simply because of the amazing number of patients they see--they are so used to kids with special needs of every type! and nashville also has a DS clinic so they are specialized in what they do there. it does make a big difference! i'm so glad colin (and you guys) had a good experience there! there is nothing better than feeling like the doctors GET you and your kid!

Kelly said...

So happy to read this post!! Glad you had a great experience, Kelli. That is 1/2 the battle. Landon is also involved in the Ds Program at Childen's Hospital, Boston. We absolutely love it there too. I'm so glad that Colin was at ease with all the testing. I just love the pic of him at the table....soooo CUTE!

I'll be waiting for those dates!! We are VERY clost to both places. We frequent BOTH quite often and there is lots to do too!! Looking forward to it:)

Heidi said...

Glad the assessment went so well! I just love all of those pictures of Colin - he is just too cute for words!

Becca said...

What a little trooper! I can never speak highly enough of CHOP from our experience there when Samantha was 4 months old. It really is designed to be uplifting and positive.

Nana said...

Glad to see you had such a positive experience at CHOP(glad I finally learned what that stands for lol)and that you had so much fun at the softball game!! What a happy little boy he looks at the table!! Love, Nana

Adrienne said...

Got your message and Colin's gift for Bennett! So cute- thank you!! We'll have to check out CHOP's Trisomy 21 program-maybe we'll have to schedule our appt. for the same day so we can make a day of it and visit:)

Rochelle said...

So glad it was such a great experience for you all. Colin looks like such a big boy behind that desk. I could just eat him up he is so cute!

Derek, Kenzee and Gage said...

What a great program! So happy the experience was a positive one, it makes such a difference! He is just adorable, I can't get over it!

Melissa M said...

This sounds like a great program! I wish we had something similar close to us...