Yesterday was another huge, exhausting day. There at 8 AM, home at 3:15 PM. It was good, though. We saw 8 different kinds of specialists and health care professionals. We didn't get a lot of questions answered, but we are on the right track to resolving some issues that center on feeding & Judah's lung. To recap...
Pediatrician/Nurse Practitioner - We saw the NP. She was very nice & very helpful. We reviewed Judah's history (and when I say that, I mean we went over every page of his own personal history book) and then focused on our main concern: weight. I've had so much pressure from his regular ped. about his weight/growth & eating. The endocrinologist, though, isn't concerned. So Jared & I haven't really been sure what to think. We're not concerned like the ped., but obviously Judah - weighing in at 12 lb. 9 1/2 oz. & 23" long yesterday - is tiny for an 8 mo. old. He's happy, content, & pretty healthy, so "failure to thrive" seems ridiculous to me; but I don't know how to advocate for him and respond to the pediatrician about all this. After talking with the NP extensively about all this, including a feeding log I've kept for Judah & our concerns about his acid reflux, she narrowed it down to her main concern. The spot on his lung, which could actually be aspirated milk. Judah may be a "silent aspirator" - a little kiddo who aspirates what he's eating without any outward show of it, i.e. infection, pneumonia, choking, problems swallowing. The first thing to do is rule that out. So, we now have an appointment next week at another multidisciplinary clinic at Childrens: the Aero-Digestive Clinic. There we'll be seeing a dietitian, a GI specialist, and a Pulmonologist. Judah will also need to undergo a swallow study to determine exactly where every bit of milk is going. Anyway, back to the CDC.
Dietitian - The NP went over everything we talked about with the dietitian, who then came to see us. She was very helpful as well. Based on Judah's size he is getting all the calories he needs. And, based on his length, he is in the 66th percentile for weight. Meaning, he's the perfect size for his complicatedly sick little self, and it has nothing to do with his age!! She also gave us some samples of new formula that would be gentler on his system. Bye bye high calorie, too rich, prescription Neo-Sure! So, with a gentler formula to supplement with, and a higher dosage of Prevacid prescribed by the NP, Judah's acid reflux should be under control again, and spitting will hopefully no longer be uncomfortable for him.
NeuroSurgeon - After reviewing Judah's history, this dr. basically said "Call if anything changes". Love it!
Neurologist - We didn't have to see the clinic's since we just saw another Childrens neurologist on Monday. Her recommendation was to come back in another 6 months and definitely keep our MRI appt. for June. At 1 yr. old, that will give them a much clearer picture of his brain & what parts are most effected by the way it developed inutero then what they got from the MRI after birth. She also said that Judah is very delayed and that's not a good sign. Really? Huh, I hadn't noticed. (Anyone pick up on the sarcasm?)
OT & PT - These were fun. We got some good encouragement about where Judah's at & what we're doing at home. Got some new ideas for exercises. They both recommended that PT become a part of his normal therapy soon.
Genetics - We always love seeing our geneticist! She's fun and honest and loves Judah and makes us laugh and she's tenacious and determined and doesn't give up! No news about the syndrome, though. She ordered a very sophisticated, not often done blood test when Judah had his surgery in December. She had high hopes for this one because Judah was such a good candidate for it. It came back normal. She has now determined that Judah's syndrome was caused by 1 - ONE - gene. There are 20,000 genes in every cell in the human body. Ya, good luck finding the little rebel! More than ever I believe that it will be God alone that makes this syndrome known. And since He pretty much works on a "need to know" basis, we just might never know. We talked about new things that have developed with him. And new finds, like a bifid 5th right rib. Never showed up on the skeletal survey, but the recent chest xrays showed that Judah's 5th rib on the right side actually splits off into 2. It's not broken, it was just fashioned that way. It's another part of Judah's uniqueness. We'll be seeing this specialist again in July when we go back to the Boys Town craniofacial clinic.
Urologist - This was another quick visit, but a good one. We really like this dr. He's gentle, kind, soft-spoken, and his excellent reputation and testimony precedes him. He examined Judah, reminded us that he needed an ultrasound of Judah's kidneys, bladder, and..."other" that day, and then said "See you in 3 months". (At 2:00 I took Judah to Radiology for that ultrasound. He has one every 3 months so the urologist and nephrologist can see what's happening in that area, and determine how he's developing and what kind of treatment he might require and when.)
Social Worker - This very nice lady just needed to make sure that we were handling everything ok, had everything we needed for Judah in the way of help and support, and answer any questions we might have. She didn't seem to be too worried about us though. Apparently our testimony precedes us as well. She said she had been told that we have a "spiritual background" and it sure does help to have a "Higher Power to call on in times like this". Well if that's not an open door I don't know what is! I told her that it's God grace that carries me through each day, and that His grace is perfect for whatever each day holds. That was a pretty short meeting, too, but a positive one.
So now we wait for the next clinic, and hopefully get some answers about Judah's feeding and lung questions. Didn't know we had questions like this until 2 days ago, but I'm thankful that we have a plan and a fast-approaching appt. The NP told us it was amazing that we got into that Aero-Digestive clinic so quickly. Ya, I think God is amazing, and He's the One that paves the way for His little lion.
Thanks for praying for us. Today I need strength & energy. I'm exhausted. BUT GOD... His strength is made perfect in my weakness, He lifts me up and enables me to soar, and His arms are the perfect place to find rest.
One more thing... Praise and Glory to the One who provided best friends and an Aunt & Uncle rolled into one who love our family and happily parade their "rent-a-kids" in downtown Omaha while we are with Judah!
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