Cohen had 3 appointments this week.... his second EEG, hearing test, and
ENT appointment. The update is long - sorry, I just really like to get it all down for my record keeping and "
scrapbooking" purposes. Some of this is from appointments a while back that I never got to record.
He passed his hearing test. Big praises. It's hard to get a definite result on a 14 month old so they just classify them in the top, middle, or bottom third. Cohen did great and was in the top 3rd for hearing. We weren't really suspecting hearing loss but he had the test for 2 reasons - first, just because he's had a lot of ear infections, has tubes, and isn't talking yet. Second, just for a baseline, as hearing issues can be common for people with dwarfism.
His
ENT appointment went fine. His tube has fallen out in his left ear but we were expecting this because in March it looked like it was about to fall out. He has no fluid in his ear so we'll sort of wait and see as far as replacing the tube goes.
His EEG on Wednesday went fine again as far as how well he handled it. We were even able to go to therapy first and then go straight there and he was such a little trooper still. Again, we didn't see the activity that concerned us during the EEG. I wasn't too frustrated by this because I wasn't expecting to see it since he hasn't been doing it very often right now. ( which is great!!) But it doesn't give us much in the way of answers. Yesterday, I spoke with my pediatrician and she and I decided to go ahead and get the ball rolling on scheduling an MRI. It's really something we would have liked to waited on until he got a little bigger but something that really needs to be done for lots of kids with dwarfism and with the issues we're currently having we just feel like it's time to be more proactive instead of reactive. The MRI will be for his head, neck, and spine. The biggest thing we're
interested in other than seeing if we see anything causing the odd behavior we've seen, his cervical spine. I was a little nervous to request the MRI because sedation is a big risk for Cohen. But later that day, the
neurologist called, confirmed what I expected that the EEG didn't show anything again, and then said he wanted to do an MRI to check his head and cervical spine.
Sedation is still a big risk but now I
don't' feel as much like I'm the only one thinking it needs to be done. We don't have a date yet for the MRI and in the meantime, I'm busy making sure all the
safeguards we'll need for him will be in place.
We're in sort of an interesting crossroads with Cohen's medical care. We have some great doctors here, and individually they all take great care of Cohen. However, dwarfism, in and of itself is not super common, and Cohen's purposed type of dwarfism is not something any doctor in the US has ever dealt with. So far, we've accepted Cohen's medical care based on the little everyone knows about what is "suppose to be" with
Odontochondrodysplasia. But now that he's gotten older and we aren't just trying to make sure he can breath, we're getting to a place of feeling like we need a little more. Also, Cohen's diagnosis can't be confirmed so we aren't always super comfortable treating him with the assumption that his
diagnosis is
definitely correct.
In March, we had a slew of appointments for Cohen....
ENT, 1 year check up, developmental
peds,
pulmonologist, orthopedic at
Shriner's, and geneticist. While Cohen checked out relatively well in most of these
appointments, overall we feel like there are some holes we'd like filed in. Not,
because any certain doctor isn't doing a good job, but just because it's
SOO many different doctors and none of them are experts in dwarfism. So, in March, we requested that our geneticist refer him to
Alferd I.
Dupont Institute in Delaware and that we make it a goal for him to be seen there sometime within the year. Just to get a better overall picture, from somewhere that has expertise in dwarfism. He was totally on board with it. With all that's going on, we now plan to try to make that happen sooner rather than later. I 'd also like to do it while we're out of RSV season and all. ( Love that those monthly shots are done, by the way - at least till next fall!) We've so far been doing a little bit more of a wait and see approach and are just feeling the need, like I said earlier, to be a bit more proactive then just reactive.
Of course, all of this has to be balanced between being wise and responsible but also trusting God with it all in the end. I saw a quote this morning that said, "Christianity isn't about being a pessimistic or an optimist but rather being a realist who has confidence in God." We are trying to make sure that Cohen receives the medical care he needs but at the same time not be consumed and overwhelmed with worrying over it all too much or all the time.
In the midst of taking care of Cohen's medical needs, life happens. And we so enjoy that life with him and Cort. We don't ever want to feel like we let the "issues" outweigh the enjoyment of life with him. He's such a happy little boy and a blessing to our family and we couldn't be more proud of how far he's come or how great he's doing. Our attempts to make sure that Cohen receives the medical care he needs and the therapy he needs to help with his development, is secondary to the love and life we share with him.
For more documentation purposes on some
appointments that I never got to record:
At his
pumonologist, they were really thrilled with how well his lungs are doing. Praise God!! We had been noticing a pattern of a night time cough so they sent us with some
nebulizer mouth pieces ( we already have a
nebulizer for Cort) to try when that happens and if it gets worse then might have to do some reactive airway disease medications. We will also
probably do a sleep study at some point. Since, that
appointment, we haven't had to use the
nebulizer!! YEA!!!
His developmental
pediatrician did an evaluation on him at his one year check in March. At that time he had age equivalents of 6 months for physical, 10 mos. for
language, 12 mos.
social and emotional, and 8 mos. for cognitive. These were all about what I was expecting and have seen progress since then with all of these areas. We see them again between 15 and 16 mos. We are switching nurse
practitioners there just because they feel like what is a little more knowledgeable with some of Cohen's medical issues.
I also requested a speech
eval and so we have that on May 26.
We will being seeing his eye doctor for a follow up in June and probably his cardiologist just to make sure that his labored breathing hasn't put any strain on his heart.
His
Shriner's appt. went fine and we plan on going back at 18 mos. to do
xrays again. We're going to be really
interested in seeing what sort of orthopedic info we get up in Delaware if and when we go.
Shriner's, by the way, is a great Hospital here in
Greenville, that serves patients
orthopedically for free and there is a risk of it being shut down due to the economy. The final vote will be in July as to if it stays open or not. It is such a blessing to
SOOO many people in this region. Please pray that it doesn't close.
Okay - done with all the overload of medical information.
