"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!
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| 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.)
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.
