Monday, February 14, 2011

Medical Update

In the past month, Colin has been to three different doctors for check-ups with different things. The first was his 6 month check up at the Trisomy 21 clinic at CHOP which we went to a few weeks ago. I was hoping for some bigger answers when it came to the feeding issues, but they were so happy with his progress that they basically just said that since he is doing better than the last time he was here, just continue with what we are doing. The OT spent a good amount of time with him and she was really happy with his play and skills that he was demonstrating. I was really happy with the visit, but was hoping for a little bit more with the feeding. We don't need to follow up again until Colin is 3, so that was good news...

The second appointment was last week when we went to see Colin's pediatrician Dr. Uma. I had scheduled the appointment so we could check in with her, finish up his vaccinations, and get some scripts for things like feeding therapy assessment, orthodics, and discuss any weight issues. Well, she was a little unhappy because in the past 4 months, Colin has only gained 2 OUNCES. We were shocked because despite all of the weight issues when Colin was a newborn, this is the least amount of weight he has ever gained in that span of time. She did bring up a good point that he is much more active now, but would like to see him gaining more weight. She has us keeping track of his intake so that she can figure out a calorie total which brings me back to the months of keeping track of how many cc's and then ounces he was drinking of his formula. It makes me a bit stressed, but he looks like a healthy boy and so we will continue with what we are doing, even if it IS frustrating.

Finally, we were off to see the urologist today regarding Colin's "retractable" testicle (which seems to be better now) as well as his circumcision. We never felt that it was done correctly the first time because he has always had excess skin and at times, it appears as though it wasn't actually done. The urologist felt that after giving it a year, it wasn't going to be changing so our only option to fix the problem would be a circumcision revision. This procedure is of course optional, since circumcisions are elective from the beginning. We chose a circumcision for a reason which includes hygiene issues as well as appearance issues. It's a scary though to put Colin under anesthesia for something that is elective, but I have to say that I am drawn to fixing it for many reasons. Everyone has their own reasons for why or why not they may not circumcise their children, so I apologize if I offend anyone, but I feel that Colin is going to face so many circumstances because he is different, that I don't want this to be one more. It's ironic because this is something that has nothing to do with Trisomy 21, yet we have to make a decision anyway.

We discussed with the doctor our fears about the anesthesia, and he said that Colin really isn't at any more increased risk that any other child his age because he has always been very healthy. It would be a short procedure and one that if we decide to do, should be done by the time he is 2 because it becomes more painful the older a child gets. So, we have a lot to decide and I'm not sure which direction we will go. The only thing that makes me pause about making this decision is putting Colin under so that will be significantly weighed into our decision.

To leave you on a fun note...here is Colin "chatting with Daddy"...

7 comments:

Kelly said...

I cannot wait to see you guys again and to get my hands on that little bundle of love!! I LOVE this video:) We are going to have to have the boys SKYPE someday.....wouldn't that be FUN??!!!

As I was reading this post, I totally felt your pain....the weight issue (we spoke about that on that phone).....we are still keeping a daily log of what Landon eats too!! FRUSTRATING!

And the anesthesia thing......sigh.....we just found out today at the ENT that Landon needs to have tubes!! I'm totally ok with the surgery.....but I am scared to death of the anesthesia!!!!

We'll have to chat soon!!!

Lori said...

Charlie is not circumcised. We had planned to have it done, but they were unable to perform the procedure when he was born b/c they thought he had hypospadias (I'll let you look it up if you haven't heard of it). Turns out he didn't and we never thought to get it done after that. Plus, he looks as though he has a partial circumcision as it is, or a botched one anyway. So, if you decide against it, he can hang out with Charlie and be "More Alike Than Different" - ha! =)

Nana said...

Oh so cute!!

Erin said...

I completely understand about wanting the circumcision and I understand your fear about Colin undergoing anesthesia. It's always difficult and worrisome. Love the video of Colin saying "hi daddy!"

Adrienne said...

Well, you now how I feel about surgery-yikes-we have to be at the hospital at 6:00 am!

But do look into the anesthesia with our kids-precautions do need to be taken even if Colin didn't have heart surgery. Just like most things kids with DS can react differently to it. But by no means should it make you not do it, just make sure the staff is aware and they will be but it's always good for everyone to be on the same page. Keep us updated but I guess we can chat more because we will see you in just few days-yay!!

jjpsmommy07 said...

Jonathon has weight issues all the time. some things that work for us is cheese(u can pretty much put on anything)and we just started back up Instant Carnation drink mix...we do yogurt daily..I am always looking for some good recipes for him. Good luck.

randy said...

Well - YOU sure are a natural when it comes to "worry"...comes easy doesn't it?? So, right from the mouth of me - Captain Obvious - follow your instincts, trust yourself - no second guessing when LOVE is your motivator and maybe just maybe if you proceed forward you might feel better if you have the procedure done at CHOP or any other exclusive pediatric facility/specialist...since that is their "business". They are totally experienced (with kiddies AND stressed Parents - which are the much more delicate matter anyway and a known fact that they are the ones that REALLY need to be medicated). Unfortunately - do over circumcisions are all too common. When we experieced elective surgery for Jarred (he was 4), we made them give him a shot in MY arms so he NEVER knew he left - no separation trauma, fear in advance (for him anyway- only us)...just strange to him was his leaving the house in pj's. But first things first...have baby #2 happy, snuggly and in your arms and you can think about what is best for all of you during one of the many 2 AM feedings:-)...Take it easy...or as much as possible!