Boys Town

On Friday morning we took Judah to the Craniofacial clinic at Boys Town National Research Hospital to be seen by the craniofacial team. They're one of the best teams in the nation! We praise the Lord again for the amazing care and opportunities Judah has here; but it was an exhausting morning. We arrived at 8:15, met with 8 different specialists, and were finally ready to go at 12:40.

Audiology - This was Judah's 1st stop. He had 2 tests done on his ears. One to check for fluid, the other to check his hearing. He has fluid in his ears behind the drums, and he failed the hearing screen in both ears. (He had passed his newborn screen.) A little disappointing, yes, but to be expected because of his cleft palate. He'll have another hearing screen at a later date.

Nurse - This woman is wonderful, and when it comes to feeding a CL/CP kid, she's the specialist! She was also very caring and compassionate, she made sure all of Judah's appointments with the other specialists went smoothly, and she checked with us several times to see if we had questions or to make sure we were doing o.k.

Dental - We got quite an education at this stop! There are all kinds of "teething" possibilities and scenarios that we may face with Judah. Extra teeth, not enough teeth, teeth showing up in the wrong places (i.e. an eye tooth in the back instead of the front). Fascinating fact: a dentist can pull an extra tooth, or one coming through in the wrong place, save it, and actually put it back in another place! Needless to say, Judah will have lots of visits to the dentist. Thank the Lord for a good pediatric one! (The orthodontist will come later...)

Speech Pathology - This was basically an informative meeting. It's so interesting how God created our palates to enable us to speak properly. Judah will get regular speech therapy later on.

Otolaryngology - The ENT specialist. Judah will have tubes placed in his ears when he gets his lip repaired. Another disappointment, but unavoidable. The fluid in his ears will cause hearing loss if untreated, and that would also effect speech development. I wish we didn't have to do the tubes, but I'm so thankful that there's something in place to take care of the fluid and save his hearing and speech. And at least this surgery will be painless!

Pediatric Geneticist - Judah has a great one! Jared & I both really like her, and we'll be seeing her at the Childrens Developmental Clinic (CDC) that Judah will be a part of as well, so we're thankful for that! She calls Judah a little mystery man, and says he's making her think. She believes that Judah has a syndrome, one cause for all the health problems he has, but she has yet to find it. I'm not too worried about it. It would be nice to know what it is so we could know better what to expect down the road, and how to better anticipate Judah's needs later on...but knowing wouldn't really change anything. We're still going to do our very best for him, taking it just one day at a time. We're still going to love him to the fullest no matter what. And bottom line, GOD KNOWS. There's no mystery there. I think ignorance may be a blessing in this case, too. Not knowing about something severe that could be coming... Worrying about possible things that could happen with a known syndrome; but they might not even happen... Taking it a day at a time, and having the opportunity to be surprised by his progress... Just being able to enjoy Judah as Judah, and see all the potential he has - no labels. We'll know the name of his syndrome eventually, but that's in God's timing. In the meantime we watch for developmental milestones/delays. We meet with our genetics specialist periodically. We wait for test results. A few weeks ago Judah had a Micro-ray test done on his chromosomes. It spliced his chromosomes into 44,000 pieces, then tested the DNA in those pieces. That test came back normal. Since that time another test has come out. (She said the field of genetics is so young that it changes and new tests, etc. come out virtually every day.) It splices the chromosomes into 244,000 pieces - the mind reels - and tests the DNA in those pieces. Because of hospital policy, she needs pre-approval from Medicaid to run this test. She doesn't think they would give it. So, she was going to talk to the director of the lab about running the test on Judah's chromosomes for free, because he's a special case and a good candidate. (Well, we already knew he was special!!)

Plastic Surgery - This is the dr. that made me cry. The recovery from the lip surgery includes an overnight stay, 3 weeks in elbow restraints so Judah can't touch his lip, and 3 weeks without any nippling - no nursing, no bottle, no pacifier. We feed him with a tube and a syringe. The palate recovery includes another stay, 3 weeks in elbow restraints, and 6 weeks without nippling. Surely there is a surgeon somewhere that believes it's healthy and beneficial to allow the infant to nurse after these repairs! I just have to find him, and then present my case to the amazing surgeon that Judah has here. (I've never met him, but Jared loooves him and says he must be somebody's grandpa! He's also the best surgeon in this region, and performs 90% of the repairs here.) The lip repair normally comes around 3 mo. of age. But the ENT dr. said ideally tubes wouldn't come until at least 5 mo. About 1/4 of the kids that get tubes sooner have to have them redone. Jared asked if we could just wait until at least 5 mo. and have the repair done then. The dr. said no one had ever asked that before. Most parents are so eager to get the repair done, that they just do everything at 3 mo. (According to the surgeons at this clinic.) Well, we're NOT most parents. I'd much rather wait. There are several reasons. The biggest being that I'm not at all eager to "fix" Judah's beautiful little face. We'll be losing a part of him. There are faces that he makes that are unique to him because of that cleft - so precious & adorable - and I don't want to lose that. So, we'll just do our best to put off the inevitable.

Pediatrician - Judah's final stop was with the pediatrician who is also the director of the clinic. He looked Judah over, did an overview/wrap-up of everything, and made one final recommendation: that Judah have his repair surgeries done at Childrens because of the post-op care that he'll need for his other conditions. He's already in the system there, they know him, we know them...it makes sense.

After we left the specialists all got together to discuss Judah's and the 4 other kids' cases that were there that morning. In 3-4 weeks we'll be getting their report and plan for Judah and will go from there. I'm glad for this time to wait. It gives us time to process all of this and start making mental shifts to prepare for his upcoming surgeries. This is a lot. This would be a lot if a cleft lip & palate were the only things we were dealing with. I hate that Judah has to go through these things. I'm thankful that he won't remember. I believe that Jesus will grieve with us and comfort us as we cry over Judah while he's hurting and recovering. He'll carry us through. And I believe that this is all a part of the story that God is writing for Judah. This is just one chapter. I don't know why, but God knows why this is necessary for him in this life; and He knows how He will receive glory from writing this chapter, instead of ommiting it. We're committed to His receiving glory regardless of the cost...but oh how it hurts and will hurt. BUT GOD...

"Oh! His grace and goodness toward us are so great, that without great assaults and trials it cannot be understood." -Martin Luther