I promised an update last week and I just didn't get to it. I apologize. Last Thursday, Jayson called me at work and let me know that there was clear liquid coming out of Jaxson's ear. I called the doctor and we were able to get him in that evening. The god news is that the tubes are doing their job. The bad news is that because he has hearing aids, he is more susceptible to ear infections. So when we went to see the ENT yesterday (it was a prescheduled appointment), he told us to keep the drops on hand and if we ever need a refill to call his office. He said that if it happens again, we can just use the drops. If the liquid is discolored at all, then we'll need to take him in, but as long as it's clear we can just use the drops and it will clear up pretty quickly. So that is nice because that means we don't have to rush him off to the doctor every time his ears decide to act up.
Early Thursday morning, I took Jaxson to the eye doctor for his first vision screening. Unless they did one in the NICU I am unaware of, which I doubt. I've had strong concerns about Jaxson's eyes, given my own issues with strabismus that runs in my family. His vision alone is fine. He's a little far-sighted, but not out of the normal range for a baby his age. The crazy thing is that the doctor said his right eye isn't pulling in (same eye as me and my mom). He said that when Jaxson looks to the right, his left eye doesn't go in all the way, so if we ever see him turning his head a little to see something, that's why. He's compensating well for it right now, so no action. But we go back in three months to have his eyes checked again just to see how he's progressing. Personally, I think the doctor is crazy. I'm pretty sure his right eye is turning in, even if his left eye isn't fully cooperating. So I'm keeping an eye on it at home and I'll see what he says in three months. Nothing can be done about it right now anyway, so hopefully it's just a phase. I know I had the same concerns about Jeffrey and his eyes are fine now, so it could pass and be part of his slow development. The doctor also said that Jaxson's eyes are a little wide-set, which you can tell by looking at him. But they measured wide too, so that's something else to add to the list.
The reason for the ENT visit on Monday was a follow up to the sleep study. Jaxson snored 95% of the night during the study, so they wanted to see if there was anything obstructing his airway. The doctor read the report while I was there and said that he didn't see anything that needed action at this point. I don't know what that means, and for whatever reason I didn't push for an answer. But I guess it's something else for us to monitor and keep them updated about. Jaxson is now on Claritin every day, poor little guy's eyes turn read and watery within minutes of being outside without it. And we think that's helping.
We also think that the spinal surgery was a HUGE help in a lot of ways. He is definitely sleeping better, we're down to him waking up once a night on most nights. Sometimes he doesn't wake up at all (not often, but we'll take what we can get!) and sometimes he still wakes up at least twice, but his good nights are coming more and more frequently.He's also taking two naps a day on a regular basis and I think he's finally adjusting to a schedule. Because of his delays, I just think it took his little body more time than normal to adjust, plus I think his back was hurting him more than we realized. A tethered cord can cause lower back pain, so getting that fixed has been huge for his development.
Speaking of development, Jaxson officially crawls! He's pretty jerky with his movements, but he's pretty much only happy if he's on the floor playing with toys. He loves playing with Jeffrey in the front room and getting whatever he can in his mouth. Last night, he ate two rice rusks all by himself. It's the first time we've gotten him to understand that they are food and he's supposed to eat them! We haven't tried to give him any for awhile and it was like he'd been eating them for a week. He hasn't taken to anything smaller yet, but we're working on that too. He is starting to take more from a spoon too. We have to mix all of his food with rice or he won't touch it, but he eats about half a jar per day now, as opposed to a jar lasting 3 days or half of it going to waste. He's also starting to babble! His favorite thing to say is, "mama". It's actually the only thing he says haha. He makes the funniest face when he says it too. It's like he has to really try to make the sound, but he loves saying it to get my attention and then giggling at me when I respond. He is so much fun right now! We're also working on standing. I'm not sure how long it will be before he can pull himself up, but if we stand him up, he can hold on to his exersaucer for a little while and stand on his own while playing with one of the toys attached to it. We still have to sit behind him because it doesn't last a very long time, but it's getting better and each time he wants to try for longer. He has improved leaps and bounds over the last month and it's so great to see him acting like any other baby his age, at least mos of the time!
Jaxson's cleft palate repair has been scheduled for July 29. It's a pretty quick procedure and I think he will only be there for one night, so it's not all that bad. They saved the easiest one for last! Of course, knowing Jaxson, we'll still be there for three nights. He doesn't know how to do anything the easy way! I'm actually surprised they didn't schedule the surgery for July 3rd. He was in the hospital on Christmas and Easter, why not his birthday?
The biggest news to share, though, is that I am on medical leave from work for 6 weeks. The time finally came when I could no longer properly do my job and be the mom of a child with a disability. Jeffrey and Jaxson were both miserable, Jayson and I had no reign on our tempers, and my production at work went down the drain. I talked to the doctor who told me to take my Effexor for one more month and then I'm going back to report to him how I am doing. I'm also starting counseling on Friday to address some things that are going on with me. Thanks to Sammy and listening to/watching her deal with post-concussion syndrome, I've learned to become more in-tune with my body and understand what it's trying to tell me. I'm just glad I was able to recognize it now instead of before it was too late. I do no one any good if I don't take care of myself, so that's where I am. The break from work will be nice for everyone. And when I go back to work, I am dropping down to a part-time CSR. Jayson is going to go back to work to make up the difference, but it's clear that I cannot continue to work full-time and survive.
I'm so excited for everything that is going on with us right now. I'm taking the right steps to care for myself, Jayson gets to go back to work (which he very much wants to do), Jaxson is improving every day and Jeffrey is throwing less fits. I am also excited that both Jeffrey and Jaxson will be headed to school this fall! Help Me Grow is helping us get them both into the same Head Start school! I was so excited to hear that we would be able to do that because I wanted so badly to keep them together. Because Jaxson qualifies with his medical conditions, Jeffrey can go in as a normal peer. It means we don't have to qualify income-wise and we only have to pay $100 a month. Huge, huge, huge. Jeffrey will be so excited (and already is) to go back to school, and he's got such a caring and sensitive way about him that being around kids with disabilities will be nothing for him. He's fabulous with Jaxson and I think it will be so good for him to be in that environment until we get him into kindergarten.
Overall, things are on a positive swing for the Burks family. Jaxson is almost done with surgeries (5 in one year boggles my mind) and we're getting everything else straightened out slowly but surely. I still have bad days, but not today. Today is a good day.
"Life is not what it's supposed to be, it is the way it is. The way you cope with it is what makes the difference."
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