If you can't guess by the lack of posts, things at the Burks household have been quite busy lately. Jaxson has had five appointments since my last post and has three more this week. We met with plastic surgery first, it was just a follow up to the conversation we had in the NICU. Nothing new, but his skull surgery can't be scheduled until he's cleared by cardiology and hematology. In the meantime, I'm waiting to hear about scheduling his spinal MRI and 3D image of his skull in preparation for the surgery.
The next appointment was physical therapy. Jaxson has some muscles that are pretty tight, which is somewhat normal for a baby who's been in the hospital. His third appointment was in conjunction with PT, it was his Help Me Grow assessment. HMG is through the state and they provide home-based PT, occupations therapy, speech therapy, etc. So Jayson learned some stretches to do with Jaxson at PT and he'll go there every other week through our private insurance, and once HMG gets his immunization record, they'll come out to the house about once a month to do additional therapies as needed.
Jaxson's third and fourth appointments were on the same day. The first was the follow up to his G Tube surgery and circumcision. Everything looks great on both counts, healing well. We go back in two weeks to have the G Tube replaced and have the doctor show us how much water to add should the Mickey button come out. The second of those two was his audiology appointment. They wanted to retest his left ear because he showed some signs of hearing loss during his initial test at the hospital. The appointment took 2.5 hours and I was at my wits end by the time it was over. The right ear results were conclusive. While it showed he had some mild hearing loss on the outside, his ear nerve actually registered normal. Which means there's either something structural blocking the sound or there's fluid behind his ear. She did not get to test how well his ear drums were moving because he wouldn't tolerate it, but his right ear should be fine. His left ear tests were inconclusive because he was done with the testing, but it's quite likely that he'll have mild hearing loss in his left ear. From what's understand, it's not common for babies to be born with hearing loss in one ear (go figure), but it's mild and likely fixable with a hearing aid, we'll know more in five weeks. We have to meet with the ENT and repeat the test he just had to get some better results.
This week, Jaxson has a well baby check and immunizations on Tuesday. Then on Friday he'll follow up with neonatology and cardiology. Next Monday he has a hematology appointment, so we should know by the end of next week when his skull surgery will take place. It should happen in the next month.
I wanted to do another timeline on here, as I'm sure I frequently will when things pop up, to catch up people who haven't been following or who can't keep up (not like I really can either!) as things continue to make their way to our calendar. So here it is:
Cardiology and hematology follow up (test for prothrombin gene mutation)
Set ophthalmology appt to check vision and possibility of strabismus
3-4 months - skull surgery
Audiology follow up, if there's a problem, further testing and probably tubes
6-8 months - spinal surgery
10-12 month - cleft surgery
Urology follow up on September 20 to check on blockage, if it's not resolved, surgery
Holes where testicles dropped did not heal at birth like they should have, will require surgery at some point
*before any surgeries take place, he must be cleared by cardiology and hematology
The next 12-18 months are going to be long and full of doctor and hospital visits. But it seems like everything is slowing down (believe it or not) and becoming manageable. Jeffrey's stutter now only appears when he's excited or upset, which is a huge step in the right direction. Jayson and I are becoming more comfortable in our roles in the family and making things work the best they can for us. Jaxson is growing like a weed, he's already 9lbs 2oz! And he sometimes (not often, unfortunately) will sleep for 6 hours at night. But even so, Jayson and I are taking turns and working in shifts on some nights to get through it. I think we have a good schedule worked out and I think that Jax will start sleeping through the night very soon.
For now, we'll just keep doing what we're doing since it seems to be working. And for those times when Jax will only calm down for mommy, there's caffeine to get me through the day. And someday I'll get to share a bed with my husband again. Without a child in between us!
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