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...

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 time....how 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.

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 wonder...is 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...

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

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!!

First Real Haircut

So...besides the little "side shave" he had in the hospital when the NP was trying to find a spot for a PICC line (which we ended up not needing, thank You Lord!)...Mason got his first real trim today. He was in serious need of it too.

Here are the before shots....

And after. (Clearly I'm not a pro, but I do think he looks a lot more "clean cut" than before!)

 Here's what we had to show for it. Wow. He could probably donate it to Locks of Love. :)

It did make me sad to cut off all those handsome brown curls.

Out with the Old, In with the New...

"...The old has gone, the new is here!"  2 Cor. 5:17

NEW Mic-KEY Button to replace the long g-tube! (Big brother likes it too...along with those cute feet!)

NEW...talent! 

(Feet? I have feet? Hey look I can raise my legs...who knew there were feet down there!?)

NEW...TOYS!!

 

 NEW...experiences: stroller rides in the sunshine...

 

New diet coming soon...(trying out his "new" seat...just waiting for the go-ahead from GI doc for rice cereal and purees). We might get to space out his pump feedings too (every 4 hrs instead of 3), and possibly change the amount...still waiting for okay on that too.

New Year's Resolutions...to keep trusting God for each new day and thank Him for all the progress we are seeing in Mason's life!

Change Is Good!

"When anxiety was great within me, your consolation brought me joy." Ps. 94:19

Mason has had a really good week! :) Granted, he and his mom had to get through some pretty stressful moments at doc appointments (including, if you haven't heard about them already), the Incident with the Frozen Wipes; the Great Big Feeding Tube Spill; and the worst of all, the episode involving "Mom, please never let my G-tube get stuck on the car seat when the nurse wants you to get me out to weigh me, because it bleeds and REALLY hurts and makes us both very miserable!!" But...we lived. And we have some good reports on top of it! Here they are, in random order:

Mason is growing like a WEED! At his weight check yesterday (2 days after turning 4 months old) he was 16 pounds, 5.6 oz!! This growth rate is in fact SO good that we got permission to back off his calories from his new GI doctor yesterday. Woo hoo! He is going to LOVE that, we hope! :) We are going back from 22-24 calories per oz down to 20 (the standard baby formula amount).This means we get to increase the water content, which we heard may also help with retching...Who knew!? We hope so! If not Pedialyte in between feeds could potentially help too. We'll see... regardless, slowing down the weight gain should help him not outgrow his seizure med dose so fast.

He also got to visit with family this week for an early Christmas celebration - and got to meet his brand new cousin for the first time! She is about 4 weeks younger than he is...but they sure both love the new glowing sea horse he got from her!! :) Here is is trying to hug them both at once :D

He also got some good reports from his latest doc visits:

1. His glaucoma is doing better - that is, he does not have high pressure in his eyes, even off the eye drops, and can stay off the drops. The opthamalogist has referred him to a cornea specialist in case he may be a candidate for a cornea transplant (he has a "corneal cloud" over one eye, blurring whatever vision he has over the colobomas, which affect his optic nerves, retinas and irises in both eyes). Even though he can't make eye contact or track consistently, he still does appear to be able to see SOMETHING, including light and fun patterns and moving objects like colorful slinkies...this is a huge PRAISE!

I love looking at these trains mommy!

2. The mild kidney problems he was born with (hydronephrosis/dilated renal pelvis) are all better :) He got to go off the antibiotics for that!

3. His ear infection is better so he is off antibiotics for that! And although he still has fluid in it which makes him prone to reinfection, he has a great new ENT who is on board with putting tubes in ASAP if he has an ongoing ear infection problem. Right now the ENT is scheduled to be present at an operation in the spring (probably to release his tethered spinal cord) if he can hold out that long. If not we can call and have it done sooner.


4. He is getting his Mic-KEY button (flat, skin-level G-tube), Lord willing, tomorrow. This should be a lot easier to care for (we hope) and to "get around" with (nothing long hanging out of his clothes to get caught on!)

The best news of all is, since he has been healthier, he has had ZERO seizures!! As of this writing (Dec. 22) his last one was Dec. 9. Usually I say that, and then he proceeds to have one, but I am still celebrating this amount of time seizure free! Thank You, God! This is so encouraging to us that maybe his seizures really are triggered/vagal related (by pain/stress/heat) and not just "random" as in epilepsy. This would be AWESOME, and as his vagus nerve matures as he grows, we pray it may be less "over-reactive."

He is also getting stronger. He likes to play the "pull up" game by holding onto someone's hands and pulling himself up to sitting. This takes a lot of work for his head control and he is doing really well there on forward extension. He is doing better tolerating tummy time too. We have also discovered that it is sucking that he has the most trouble with in oral eating (not so much swallowing) so we have moved to trying more dropper-style feeding where he can eat and swallow without sucking (which triggers the gagging). So far progress is slow but encouraging...he is taking between 5 and 15 mLs by mouth most days.

Another good change is my attitude toward Mason's "unknown" diagnosis. Though I sometimes struggle with this, I have learned that in many cases it's to a baby's advantage not to be labeled with any particular problem, particularly if it were to relate to any chromosomal abnormalities. Apparently many doctors hear this term and automatically take a "hands off" approach and prefer to withhold important treatment. If we had known in advance of his birth that Mason was sick, especially if it turns out to be anything with a "poor prognosis," the outcome to this point could've been far different when he was born (we may've been encouraged to not intervene with the life-saving surgeries he had, for example) but since they have no idea of his prognosis, they are willing to offer him every help there is available. Thank You God for this unexpected blessing and thank You for those 12 weeks in the NICU because it meant the docs were on his side and even the lack of diagnosis is a form of protection for him right now. Thank You for doctors who recognize this and are giving him every benefit of the doubt. (Please pray for my cousin Jessica who is fighting this very battle right now, as she was just told her unborn baby most likely has some form of Trisomy 13.)