It’s hard to believe we have been home almost 2 months! This is just a quick update to many of you who are continuing to pray through our transition. And we are so thankful for it!
Theo is doing great! We are definitely becoming pros at going to our many doctor’s appointments. This is the run down on the doctors we have been seeing with Theo:
Cardiologist/ Surgeons- His heart is perfect. No need to follow up for 6 months. No limit on activity and no medications. He will need another surgery around age 5 to 10 to replace a valve in his heart that was removed during his first surgery… interpretation- his heart is the least of our concerns at this point. YAY!
Neurosurgeons- many of you know after meeting Theo that he has a very flat misshapen head and his right ear turns out due to laying on his right side in the crib during his first year at the orphanage in China. After seeing the surgeons, they encouraged us to get Theo fitted for a helmet that over time would “hopefully” reshape his head. The down side is that during the appointment we found out that this is not covered by insurance and would cost about $4000. John and I discussed this in depth and were prepared to spend this if we got a second opinion that felt it was necessary. After talking to a few other doctors and a company representative who make the helmets, we learned that there is really limited information on the actual benefit of “helmeting” a child after the age of 12 months. Theo is almost 15 months at this point and brain growth usually is limited to 18months. So after a lot of thought, prayer and consults we have decided to hold off on the helmet at this point.
Urologist- At one of our first pediatrician appointments it was noted that only one of Theo’s testicles had fully descended. I know… TMI. This is apparently not uncommon and therefore we were referred to the urology department. Urology assessed him and did find 2 testicles and feel that they will descend on their own. We are planning to wait another year and reevaluate. If they have not fully descended by next year he will need surgery, but we have been reassured that this is very common and will not affect him later in life.
Speech Pathology- As I have posted many times on Facebook, Theo really has struggled with food issues. When we brought him home 8 weeks ago he was drinking 5 bottles per day and NO solid foods. The orphanage had told us in updates, prior to bringing him home, that he was eating “boiled eggs” but I am not sure this was completely true. Since then we have weened him completely off bottles and he is eating / drinking from a straw. He eats a lot of baby food! When I say a lot, I mean about 13 jars per day. I know its crazy. I spend 75$ on baby food per week. I have talked to the pediatrician and they do not want me restricting him at this point, so we will continue for now. And yes… we have tried making our own baby food, and for many reasons… it just doesn’t work for us at this point.
Can I first say that I TOTALLY under estimated speech pathologists. Wow, they are amazing! She spent over 2 hours with Theo and she pointed out that Theo’s tongue doesn’t really move… hmmmm I thought about it and my head went back and I started crying. ARE YOU SERIOUS?! Am I really a nurse practitioner? How have I not noticed this over the past 2 months? Our poor son can’t move his tongue, and that is why he can’t chew, which is why he hasn't learned to eat table food. AHHHHHHH… I am such an idiot. Once I got past my feeling like an idiot, I called my pediatrician and immediately followed up with an ENT (Ear, Nose and Throat doctor)
ENT- We drove an hour and half to see a well thought of ENT in Orlando, which turned out to be the best appointment ever. Theo has been diagnosed with posterior and anterior tongue tie. So basically he can’t really move his tongue much at all, and it never comes out of his month. Poor buddy. He will most likely need surgery on his tongue before the end of the year but we will continue to work with the speech pathologists to get as much improvement as possible before resorting to surgery. The reason everyone is not quick to do surgery is because of his heart condition. When they perform surgery it will have to be done at Arnold Palmer Hospital with the Cardiac team in the Operating Room and a cardiac anesthesiologist. So what is normally a quick easy surgery is made complicated by his high risk heart condition.
Yesterday we went to be assessed by a state funded “Early Steps Program” which evaluates him for Speech, Physical Therapy, Developmental Therapy, Occupational Therapy and a Global assessment. There were 5 therapist in the room with us and it was quite overwhelming. It was a 2 hour evaluation and Theo did great. After the evaluation, they went over the results at the and feel like Theo is cognitively age appropriate. He will need PT, OT and Speech for 1 hour each week. The good news is that they will coming to our house for therapy….Thank you Jesus!!
I know this post of was kind of boring and packed with a lot of information, but I also know a lot of you have been asking me about all the different doctor appointments. My head spins when thinking about all of them so I never know what or who I have told. So there it was!
Let me also say that Theo is exactly who God intended for our family. Yes we only thought his heart condition was his special need (and that seems to be doing great) but we know God will continue to carry us through. I so look forward to the day I can tell Theo his story. He is truly a miracle!
