It's been a year since two of the most terrifying weeks of our lives. Micah almost died of toxic shock syndrome on April 17, 2010. I saw his BP drop to almost zero in the ER while he was being intubated. I saw a blood glucose monitor show a reading of 5. We saw them shock his heart overnight. We listened to the critical care doc tell us she was "concerned about Micah's ability to survive this," as well as talk about the possible need to put him on ECMO. I was with him when they did a CT to check for brain damage after the ER blood pressure incident. He had no pulse in his extremities for hours. He wasn't "stable" for about 3-4 days. He was on a ventilator for 9 days. He checked out of the hospital after a 15-day stay and was almost back to his typical self, though he was a bit tired.
We had only lived in MN for about 6 months when that happened. But our church family and neighbors (and some nearby family) all pitched in and made those two weeks bearable for our other two boys. Some friends from our small group at church came to Micah's hospital room at 11:00pm to pray with us. We had meals delivered to our house starting on day one, even though we didn't know who would be eating at our house while taking care of the boys.
We give the glory to God for Micah's life. Since that time, I've heard of other children dying of toxic shock, and others who lost limbs, had permanent brain damage or had permanent kidney damage. Micah was basically unscathed. I believe there were THOUSANDS of people praying for our boy within hours of the news of his hospitalization spreading through Facebook and church.
So, it's about time for me to update everyone on what our little guy is up to.
Speech - I really need to document his words one of these days. He loves to talk and he'll attempt just about any word (and some phrases, mostly titles of his favorite books). He can recite the alphabet and independently identify almost every letter when shown the letters out of order. Keep in mind that an independent observer might not know each letter that he's saying (i.e. "V" sounds a lot like "B", and "K" sounds like "Tay"). He just started getting the /k/ sound at the end of words (we've been working on /k/ at the beginning of words for a LONG time, but the /k/ sound is way in the back of the mouth and requires tongue strength, which is not his forte). He can count to 10, including the number "seven," which is impressive to me because it contains three different consonants.
Social - Micah LOVES song time at church. Last year he would cower in a caregiver's lap and whine. Now he crawls to the front of the group and does most of the arm movements and smiles constantly. He looks forward to song time and signs "singing" and "Jesus" almost all morning until it's time to sing. :-)
Micah is a center-of-attention kid and loves to have an audience laugh at him. Do you think this might be a problem in school? Eek.
School - Micah goes to a transition preschool class in our school district two days/week for 1.5 hours each day. I know... it's not much. But it's great for him. There are four boys in his class and Micah is the only one with Down syndrome. Given that he has global delays (gross motor, fine motor, speech, and cognitive), he gets plenty of peer modeling because the other boys are there for one or maybe two of those reasons. The teacher on Mondays is a SPED teacher and on Tuesdays the class is taught by a SLP (speech and language pathologist). There is a para in the classroom both days. On Mondays the OT (occupational therapist) is in the room. On Tuesdays the PT (physical therapist) is there to work with Micah. It's a fabulous transition for Micah. In the fall he will be in an inclusive preschool classroom 3 mornings/week. There will be 20 children in the class and I think about 4-6 of them will be on IEP's. In addition to the classroom teacher, there will be a special education teacher and at least one para, I think. There is an area in the room where therapists come in to work with the kids.
Motor skills - In a nutshell, not Micah's forte. He's getting much more confident with walking, though it still isn't his primary mode of transit. But he's a crazy fast crawler. :-)
Eating - My favorite subject. Not. But, Micah is making progress. Our biggest challenge continues to be drinking. He'll take a few sips from a cup if we push hard enough. But he still coughs a bit. He needs more practice, so we're working on that. He's allowing a chewy tube into his mouth on occasion and his private therapists are working on a lot of oral motor stuff. He drools. A lot. Any suggestions? It drives me crazy.
Immunology - Micah made it through the winter with very little illness, all things considered. We had two ER trips for IV fluids (one for a brief overnight). He had a few infections around his g-tube site and a few rounds of antibiotics. Micah is still testing low in B-cells, which is a primary means for your body to fight infection. Given that, we feel fortunate that he's done so well.
Ophthalmology - Looks like he might need surgery this summer to fix his strabismus (eye crossing). It seems to be getting a bit worse rather than better. Fortunately, it's presenting equally in both eyes, so surgery isn't critical at this time (if one was crossing more than the other, that could lead to amblyopia and that would be bad).
ENT - Nothing new to report. Tonsils are still large, but there's no evidence of obstructive sleep apnea so the tonsils are staying in.
Cardiology - Micah will get an echo in May. But all indications are that he's doing fine. I'm looking forward to going to once a year visits rather than once every six months. That might not be possible as long as he's still on a heart medication (enalapril).
GI - No issues, barring the stoma site around his MIC-Key button. It's usually pretty red and occasionally gets infected. But I bought some ointment I heard about that forms a good barrier on the skin to protect it from leaking stomach juice and it's working well so far.
Sleep - Still not his forte. But he does seem to sleep better when he gets a dose of ibuprofen in the evening, so I'm inclined to think he has some sort of pain going on (maybe joint pain?).
Endocrine - We did a trial run off synthroid and it was not effective. His TSH shot up pretty high. His Free T4 was fine. But we decided to put him back on the synthroid.
Did I cover everything? Is anyone still reading?
Sorry I haven't posted much lately. We've been a bit busy around here. I hope to update the blog more often this spring, including more pics of our little guys.
Suspense by Rachel Dylan
5 weeks ago