Our family's journey with deaf-blindness, multiple disabilities and undiagnosed genetic disease...stories, updates, mental notes and spiritual reminders to help our family stay grounded in faith and focus on the facts as we navigate the mysteries and uncertainties of our little boy's health.
Monday, January 10, 2011
A Little of This, a Little of That...
Mason had his cornea specialist visit and we were unable to get an opinion either way on his need for a cornea transplant, because they couldn't get a good exam (apparently his "low muscle tone" outdid 3 grown adults holding him down!!) He also had a surgery doc. consult to remove a stitch hanging from his Mickey Button (this went well). At this stage, the plan is to try to release his tethered spinal cord sometime in March or April, and do ear tubes then, and the eye exam/hearing test too, OR, if the ears need it sooner, the ear tubes earlier, with just gas sedation plus eye/ear test so we can add a cornea transplant to the spring surgeries if needed. He has a well-baby visit this Thursday where we'll hear about his ears...if they are still yucky (he just got over ear infection #2), we will probably pursue plan B on the earlier tubes.
Big bro was really sick with a nasty throat/cold virus this week but is finally seeing the other side and has been entertaining himself by stocking "Micah Mart" with his play veggies.
We had a dietician session and Mason has gained (drum roll...) ... 2.5 POUNDS this month. You heard right..and I still cannot believe this is the same boy who couldn't gain an ounce for 3 weeks in the hospital!! We are still waiting for his GI doc to let us know if we can feed every 4 hrs instead of every 3.
look at that big tummy showing!! :)
Today he had occupational therapy and met a BIG MILESTONE: he ate solids!! And not only did he try them, he CLEANED HIS PLATE!! He ate around half a tablespoon...and enjoyed it immensely, by SPOON! (Apparently his problem is the sucking...not swallowing so much. So drinking his milk with a "TenderCare Feeder" with a little straw/squeeze device is helping! And if he can make progress there, (he's having up to an ounce daily by mouth!)...then we may be able to skip sucking altogether :)
In general Mason's hypotonia makes it hard for him to bear weight on his legs...
So we are trying different approaches to help with this. He got a free-standing jumper for Christmas and while we wait for him to "grow into it" (since his support pillow won't fit in it), he's using this doorway jumper...he really enjoys the sensation of swinging, as you can see :D
WHOA. What is this thing?
Hmm. It moves? I think I'll check out my room...
Pretty cool!
Worn out...we've never seen so many "sleep smiles" at once!
In the meantime, here is a song we love for this week that's keeping us motivated :D Enjoy!!
Great song and great progress going on with Mason. I'm sorry you've had to learn the meaning of words like "hypotonia" but agree that faith can certainly overcome. Praying an extra measure of God's strength, wisdom and peace for you all.
That is such a great idea with the doorway jumper and you called it a 'support pillow'-where do you get those? That would be awesome for Nick! If you don't mind emailing me at ketcham68@gmail dot com that would be great! Oh and by the way, I love Mason's hair! I wish Nick had a little more hair but I will take what I can get! Such cuties you have!
Mason had his cornea specialist visit and we were unable to get an opinion either way on his need for a cornea transplant, because they couldn't get a good exam (apparently his "low muscle tone" outdid 3 grown adults holding him down!!) He also had a surgery doc. consult to remove a stitch hanging from his Mickey Button (this went well). At this stage, the plan is to try to release his tethered spinal cord sometime in March or April, and do ear tubes then, and the eye exam/hearing test too, OR, if the ears need it sooner, the ear tubes earlier, with just gas sedation plus eye/ear test so we can add a cornea transplant to the spring surgeries if needed. He has a well-baby visit this Thursday where we'll hear about his ears...if they are still yucky (he just got over ear infection #2), we will probably pursue plan B on the earlier tubes.
Great song and great progress going on with Mason. I'm sorry you've had to learn the meaning of words like "hypotonia" but agree that faith can certainly overcome. Praying an extra measure of God's strength, wisdom and peace for you all.
ReplyDeleteThat is such a great idea with the doorway jumper and you called it a 'support pillow'-where do you get those? That would be awesome for Nick! If you don't mind emailing me at ketcham68@gmail dot com that would be great!
ReplyDeleteOh and by the way, I love Mason's hair! I wish Nick had a little more hair but I will take what I can get! Such cuties you have!