Thursday, September 15, 2011

Double Whammy (both the boys have it)

I know whom I have believed, and am convinced that he is able to guard what I have entrusted to him until that day. 2 Tim. 1:12

So we found out this month that Micah has it too.

By "it" I mean he also has the genetic deletion I carry and that is most likely the cause of Mason's syndrome.

No we don't know what it means exactly. Maybe nothing, if it turns out not to be the cause of Mason's issues. But even if it is the cause, and the problem lies in the varying number of cells in each of us (blood vs. brain vs. skin etc) that are affected by the deletion, and it adds yet another layer of uncertainty to our lives, this blog is about KNOWING. And we wanted to know.

We decided to have him tested for about a hundred reasons...

...knowing might help explain why his babyhood nearly killed us with his "normal" but unrelenting health problems (starting with unexplainable sepsis symptoms and days in the special care nursery after birth, constant viral sicknesses and ear infections, feeding issues, food allergies, soft spot closing at less than 6 mths, lack of sleep for 18 months, inability to leave him anywhere ever, etc)

...knowing might explain why he and Mason both have similar immune responses, a similar sacral dimple type area on lower back, very small adenoids, etc.

...might explain Micah's hypermobility, sensory issues and recently diagnosed hypotonia (low muscle tone) and developmental delays in fine and gross motor. (But he is actually advanced in language/cognitive so it definitely doesn't affect intelligence for him). I don't think it does in Mason either - he is quite a smarty pants :)

...knowing might explain why Micah never crawled except about a week (went right to walking - if babies do this, it's not the good thing that you might think- it actually leads to further developmental delay due to lack of upper body strength - they can't handle fine motor skills as well because hand movements for writing/drawing/coloring/self help skills are controlled by the arm/shoulders and have to be developed through crawling etc. Might also explain why he ALWAYS walked behind his stroller and pushed it as a toddler, wherever we went. We thought it was just cute how obsessed he was. But it was probably because he was using it as a walking aid to lean on :/ Never would've thought that at the time :(

He is getting PT/OT services weekly now to help him be able to do the everyday things other4 year old kids do with no trouble - swing on swings (he can't hold on long, his hands tire out), pedal his bike (he can't get the pedals around by himself yet for more than a few turns without getting tired), do monkey bars (won't even attempt), etc. His left side is actually a lot weaker (especially his leg/foot).
Here he is practicing on a trike. They have straps to help him keep feet on pedals and Miss Amy is helping him push his legs (they won't let me go in with him so I had to sneak a pic on my phone):

Anyway, kiddos who often sit like a "W" with knees under them and feet behind them, tire easily or seem "lazy" by leaning or laying down a lot, or walk "pronated" on the inside of ankles may have subtle hypotonia or developmental motor delays that benefit from PT. We are hoping it helps him a lot..

The OT should help him focus more on the hands / fine motor skills and help him get some strength/endurance for keeping up with schoolwork so his teacher doesn't have to help him do his in the future; his OT also helps him with listening therapy (since he makes loud noises nonstop in the car, etc) He has a blast at the "Big Gym" where he goes for the therapies - they have lots of fun stuff to play on. But they wear him out fast ;)

...knowing might help us gauge what sort of issues to watch out for with Mason if Micah gets similar issues to a milder degree. One example, is Micah goes numb all the time. His hands, feet, legs, etc. Over little things. If this is happening to Mason (and he can't tell us) ... we can keep our eyes open anyway for things that may make it worse (Micah can't sit in certain positions very long without numbness...prolonged numbness can cause nerve damage/weakness of extremities/ we are going to keep an eye on both of them about this.) And it helps us know what to not do with Micah (for example what meds or procedures may cause problems, based on issues seen with Mason, who's had difficult intubations consistently causing stridor (Micah always gets croup with viruses so seems likely it would happen for him too since they are similar processes but thankfully Micah has never had to be intubated.

Knowing also helps us praise God for the absolute miracle Micah is and always will be - that he is doing so remarkably well in spite of what "could have been." God is good and we praise for Him for His mercy, love and precious gift of these two boys.
 My mom gave me the new Matt Hammitt cd. It is WONDERFUL. Our favorite new songs are "Holding You" and "This is Grace."

Mason's Mix

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