Yesterday was Bo's appointment with the International Adoption Clinic. We made the appointment before we traveled to get him. We learned that it would be an excellent place to get all the referrals to all the specialists he would need to see.
We met with Dr. Keck, a developmental pediatrician. She was great! She asked a lot of questions, but listened so well to everything we said.
We now have a plan.
Bo will see plastic surgery for his syndactyly on his right hand (digits 3 & 4 are fused) which should be a simple procedure involving soft tissue only. I am all about function over form and am only considering digit separation because I am concerned it limits his dexterity. The truth is that I am very fond of his extra large digit and I will kind of miss it, I think. Plastic surgery will also check his palate as he has a bifold uvula which often indicates a malformed palate. His looks good, but we need to be sure.
Very soon Bo will have a video feed study. We believe he is aspirating thin liquids and have been thickening them since we've been home. This will tell us for sure if we need to continue and at what consistency. It will also give us a peek at the structure of his mouth and throat.
He will see a cardiologist to make sure that the OHS performed on him at the age of six months was correct and complete. Dr. Keck heard a murmur, which could be nothing...or something.
ENT is next on the list. She was unable to see inside of his right ear because of his tiny canals. We are somewhat certain that his hearing isn't the best. ENT will order hearing tests, look at his adenoids, check his need for tubes, etc.
If plastics and ENT fail to determine a structural reason for his breathing issues, a referral to pulmonology will be made. He will have a sleep study soon, as well, as he sleeps sitting up and awakens gasping multiple times a night. Clearly, he's not getting all the sleep he needs.
Urology is somewhere in there, too. Circumcision is something we are considering to prevent issues as he ages.
If Bo does need surgeries, Dr. Keck has agreed to coordinate it so several may be done at the same time, so that he needs to go under anesthesia as little as possible.
His blood tests will determine who else, if anyone, we need to schedule with, as well. While we have a complete vaccine record, we agreed to have titres done to make sure that he actually received those vaccines. Because we don't have a copy of a karyotype in his files, she ordered that, too. It seems our little man has pretty good muscle tone for a kid with T21. Anemia, HIV, hepatitis (A, B, & C), and thyroid function are all on the list.
He'll also need evaluations by physical, occupational, and speech therapies.
Whew! Thankfully, I am taking intermittent FMLA from work so I can be available for all of these appointments and any surgeries without worrying about losing my job.
None of this took us by surprise. This is what we signed up for when we decided to adopt a child with special needs. In fact, he appears to be much healthier than we anticipated. We are so blessed to live in an area with an international adoption clinic, a Down syndrome clinic, and a children's hospital close by.
I want to say a quick thank you for all the kind words both here and on facebook in response to my last post about my struggles to bond with our little man. We are doing much better and I'm feeling a lot more confident that we will find our way, sooner rather than later.
That clinic sounds awesome! Congratulations again.
ReplyDeleteThe part I always try to remember is we are bringing home kids with DS who, had we had them from birth, all of these things would have been checked along the way! So, you're playing catch up on 3 years of medical appointments and getting them all done at once.
ReplyDeleteThankful that the dr is going to try to overlap as many surgeries as possible. Glad you are bonding better and feeling more confidant. You are an awesome mama. Keep up the good work!
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