Saturday, January 15, 2011

Someday He'll Smile! ... :)

 I am still confident of this: I will see the goodness of the LORD in the land of the living. Ps. 27:13

Well, we already have seen it, time and again! But the thing with Mason that is especially hard emotionally for me right now, is how he cannot yet smile or giggle or do any sort of babbling noises. We know that his "hypoplasia of the cerebellar vermis" (part of his dandy walker stuff) can sometimes cause autistic tendencies, not true autism, but similar symptoms, since the part of his brain that controls auditory/speech/visual and coordination is not fully developed. So we are obviously trying to work on that with him, and since he can't see faces well if at all, he cannot really imitate what he sees. So far the times we have seen him smile are when he's asleep (and believe me it is one cute smile!!), when he's having a dirty diaper and once or twice when he liked the feeling of something, like his paci touching his lip. But we cannot recreate these. We have tried all the usual approaches...talking to him, playing funny games (getting him to "honk" our nose, peek a boo with a cloth, patty cake, etc), singing, swinging/bouncing him, letting him feel nice things (massages, soft tickles), toys with bright lights and music, etc etc. Some of these it's obvious he really likes..he gets very quiet, content and "happy eyes" as we call them. I love to see those "happy eyes!" But none of our attempts have yet evoked a true smile...
baby Mason can't smile...yet
Say CHEESE! (Oh well...2 out of 3 smiling isn't bad.)    :)

So imagine my husband's delight when today, as mason was on his lap, he seemed really happy and on the verge of a smile...he even called me to come see but I couldn't hear him as I was reorganizing the playroom (yes again) downstairs. He finally gave up and brought Mason down, and put him in his seat...the trip downstairs frustrated him, and no sooner was he sat down than he let out a giant yell...and had a seizure. :(

I had forgotten that when he was particularly excited (almost unnaturally so) in the hospital that a smile could be a clue that a seizure was imminent. It just shocks me every can smile as sweet as his, so rare and precious, forewarn of something so terrible?? It's hard for me to understand. How can I look forward to a smile if it means he's about to have a seizure....? These are areas of prayer for us right now...that Mason could have real smiles that are true signs of social development and that show us the sweet little boy I know who is so, so wanting to express one! -- and that these new smiles would have nothing whatsoever to do with seizure activity.
baby mason sleeping in bouncer

As far as the seizure itself, this is another request. Experience has shown us that he gets them most when something is wrong...usually it has been ear infections, also in the hospital he had some from withdrawal of pain/seizure meds. He's had 2 EIs since being home, but seizure free in between (for the longest he's ever been). It seems like the congestion triggers them by blocking his breathing. Once he had apnea from all the snot (this was when we first suspected a milk allergy and took him off milk but not in time to prevent the ear infections). Before waking up today he was struggling to breathe from congestion again, and he scared me as all his limbs began trembling uncontrollably and I could tell he was on the verge of a seizure. That one, we actually were able to prevent by immediate and thorough suctioning of his nose and throat, along with giving some 02 in case, and squeezing his calf muscles to keep blood circulating to his brain. But we didn't see that "smile" seizure coming later today.

Now we have to it the rice?? We have started him on solids this week and we thought it was going well ... it is, as far as his participation. He is doing great eating by spoon! And he continues to do well on the growing end (both his weight, and his hair!!) as you can see...

baby mason with mickey mouse lovey

But he has been having trouble every night for the last week or so...really congested, gassy and grunty, like he was back on the milk formula, hardly sleeping, which is REALLY unlike him. And yesterday he had green slimy diapers and a rash on his bottom and now one on his face. It doesn't really seem like a virus (although his brother has been sick, so who knows). We know it's possible to be an allergy, because he got rice cereal in the hospital WAY before his tummy was ready for it (they put it in his formula as a newborn to try to stop reflux); not to mention all the antibiotics he's been on and how they wreak havoc on intestines, allowing proteins to get into his bloodstream and causing the body to make antibodies to innocent stuff. We are going to take a break from the rice...if that alone doesn't help much guess it's back for another ear check. and tubes sooner rather than later if that's the problem. Pray that this is not a sign of things to come with food...the food allergy road is not a fun one either. :( But, it is one we have traveled before, with Micah.

Please pray for Micah too...he has not been eating well since his virus and has gotten really skinny and although his cold is better, he is still not eating well. He is having lots of new "aversions" to foods he once liked a lot...everything is "yucky." Pray he'll come around soon and put some meat back on those bones :)

hiding those skinny legs in sweats

Monday, January 10, 2011

A Little of This, a Little of That...

baby MasonMason 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.
playing with toy food
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.
baby Mason big tummy
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 :)
feeding problems baby mason

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 
hypotonia baby in doorway jumper
WHOA. What is this thing?
hugga-bebe pillow supporting hypotonia baby in doorway swing
Hmm. It moves? I think I'll check out my room...
hugga-bebe pillow for baby in doorway jumper
Pretty cool!
baby Mason asleep in his jumper
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!!

Mason's Mix

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