I know, I know....only one post in November and nothing since then. What can I say, we've been busy. I know I'm mentioned my desire to post in chronological order before, but I've been teasing most of you all day on Facebook with pics and videos from our day at Strong. How could I not go to bed without giving you an update on how everything went?
So I propose this solution. I give you an update now about today and then spend the next few days bringing you up to speed on what's been going on in the Smith household since Halloween. Sound good? ;)
We've been going to the Kirch Developmental Services Center every six months (or so) since Jackson was born. We attend their Physical Disabilities Clinic where we see several service providers all at once, rather then scheduled appointments with each individual department. We usually see a Pediatric Nurse Practitioner, Pediatric Urology and a Social Worker. Occasionally, we see PT and OT as well. Since, we've been going to see Dr. Sanders (Ortho) and Dr. Silberstein (Neuro) separately, we don't usually see them at clinic anymore. Prior to the clinic appointment, we head down to Radiology to get a Renal Ultrasound.
The ultrasound is used to check Jackson's kidneys and bladder. Jackson has had a slight vesicoureteral reflux since birth. This means that sometimes his urine travels from his bladder back up his ureter towards his kidneys. This leaves him at risk for increased UTIs and possible kidney infection if left untreated. He has been on an antibiotic since birth to help combat this and prevent infections. Primarily, Urology uses the ultrasound to make sure that the kidneys are growing on target for his age and also look for other abnormalities that could indicate a worsening reflux. At his last ultrasound, his left kidney was slightly dilated, but it wasn't much of a concern. Just something to monitor. This time around, the dilation was much less evident. Combine that with the absence of any UTIs and that's great news!!! Both of his kidneys look healthy and are growing well. His bladder also looks good too.
So, Urology went over those ultrasounds results but we also talked about a couple of other things. First off, Jackson's neurogenic bladder. This a common with individuals with Spina Bifida. He has a low pressure bladder. Essentially, his bladder fills and empties but usually at a constant dribble. Any small amount of pressure on his bladder can cause him to pee. His urethral sphincter, which helps control the exit of urine from his bladder is lax, so his brain most likely won't be able to tell his bladder when to hold it and when to let it go.
We're still not sure how much sensation he has with urine or bowel movements. There's not telltale sign that he's "going" for either and he doesn't seem to be bothered by wet or soiled diapers. Only time will tell. He is of potty-training age, but we're not really worried at this point about achieving continence. However, in next few years, once it's more important socially to be continent, we will be working with Urology on a program to become continent whether it be cathing or surgery or something else. In the meantime, we're still attempting to use the potty, just to get him used to it. The plan is to get on a "schedule" of using the potty. If he goes while on there, great. If not, that's okay too. He just needs to get used to the idea.
And, because we talked about pee...we also talked about poop. It's just how it goes. Similarly, his bowels are also considered neurogenic. Due to the nerve damage associated with his Spina Bifida, his bowels do not function properly. He is unable to feel when he needs to have a bowel movement and usually has them multiple times throughout the day. Additionally, the anal sphincter muscle that holds it in is lax, like the urethral sphincter, so he is unable at this point to hold it in or let it go when needed. He is also at a high risk for constipation which we treat with high-fiber foods and Miralax to keep his bowel movements soft. Unnecessary strain associated with constipation actually aggravates his rectal prolapse, so it's extremely important to keep his constipation in check. I'm trying not to be too graphic, but it's what we deal with so.....
In addition to potty time, we may be looking into starting him on a bowel management program within the next year or so, so that he has one "good" bowel movement a day. It may be a suppository or daily enema. We're not entirely sure yet as we just beginning to look into these options. Again, we're not stressing out much over this as he's not of an age where it's "socially required" to be bladder and bowel continent. But, as he gets closer to school age, especially when his peers are all out of diapers and he's not, it will be important to get a plan in place for all of this. Baby steps now should make that process easier in the future.
I was very excited to finally meet Dr. Hulbert today. He is Jackson's Urologist. I had actually never met him in person. I spoke to him on the phone when Jackson was first born and still in the NICU, but since then had only dealt with his NP. It was nice to finally put a face to the name. We've heard so many good things about him and I can say I totally agree. He has a great bedside manner and was really great at explaining things and answering any questions we may have had. We also met his new NP as Cheryl is retiring.
We also spent some time talking with Lorna, Jackson's Pediatric Nurse Practitioner. Overall, Jackson is a very happy, healthy toddler but there were a couple of things we wanted to discuss with her. Primarily, we are still seeing some auditory sensitivity that seems to have gotten worse. He has trouble with sudden, loud noises - the dog barking, other children screaming or crying, etc. He will react by crying, throwing his head and/or body back, banging his head and covering his ears.
He had his hearing tested a while ago and nothing abnormal showed and he hasn't had any ear infections or anything. And, we realize that this could be something that's considered a "normal" reaction to those situations and that he could just be a sensitive kid, but we'd like to be able to help him be able to react in a less harmful way. It was mentioned that a couple of their OTs actually have experience in desensitizing the auditory defensiveness through some listening programs so we're going to be getting in contact with them in the near future to get him evaluated and see if what they do is something that could help him. Because, the dog barks. A lot. At nothing. All the time. We have noise-cancelling headphones that we've been trying lately that helps sometimes, but they aren't exactly the most fun things to wear. Plus, it really does cancel noise. It's hard to hear normal conversation with them on. I should know. I tried them on too. I thought the quietness was divine, but that's just me. ;-)
We also talked a little bit about his texture issues, specific to feeding. Jackson does feed himself and eats different things, but still is stuck on "pouches" for fruits and veggies. We've tried on several occasions to introduce "actual" fruits and veggies, but he has an aversion to them. He might attempt them once, but not usually on a consistent basis. I know he would like a lot of these foods, if he could just eat them. Again, it's entirely possible that he's being a typical toddler and refusing only foods that he likes. Or, it could be because we used pureed foods to begin with. Or, it could be something else. As he is having no issues with weight, we're just going to continue attempting new foods both at home and at school. If by next year, we're still seeing texture issues, we'll be looking into working with a feeding specialist.
Speaking of weight - he weighed in at 33 pounds, 11 oz. He is also 34 inches tall and has a head circumference of 50.2 cm. So, it's a little larger than most boys his age, a little shorter and has an average head size. Actually, his head circumference hasn't grown much since he was a baby. He's finally just growing into it. LOL. He hasn't gained much weight in the past year and has gotten a little taller. Because he's still not bearing much weight on his legs on his own, he's not growing taller, faster. It's also why he has tiny feet for his age.
Lorna was excited to read Dr. Sanders notes that Jax has HKAFOs and was super-impressed with Jax's wheelchair skills. He was a master-manueverer and spent a good chunk of the appointment doing donuts in the exam room. He also showed off for Urology when they came in and the Social Worker that heard Jax was there and stopped in to say hello. He has quite to following. :-)
I feel like there was something else that we talked about, but at 1 in the morning I can't remember. And, I even wrote stuff down this time. LOL.
Jax had a great day. He was so well-behaved. He tolerated the ultrasound splendidly. Usually, he cries about having to do them, but this time around actually enjoyed it. Just laid there with his signature "hands behind his head" chillaxin' pose and was even laughing and clapping. It was a nice change.
He interacted with all of his providers today and even enjoyed the multiple exams. He helped them all with their stethoscopes and assisted in listening to his heart, lungs and stomach. He even guided the otoscope into his ears. Usually, he won't let you look in them. He was cracking us up. He got a doctor kit for Christmas and has been playing with it quite a bit. So, maybe that helped? Either way, he did great. We were there from 11 until 2:30 and he only showed frustration a couple of times. And that was because Papa wouldn't let him slam the cupboard doors. How dare you Papa? I didn't even have to pull much out of my arsenal of toys, books, and games that I brought along. Only his LeapPad once and a couple of matchbox cars, which he shared with Dr. Hulbert when he was in there.
We are now up to yearly follow-ups with Kirch, unless we have questions or something comes up (like a UTI).
Coming up this month is a follow-up with Dr. Sanders for Jackson's new TLSO and HKAFOs and a follow-up with Dr. Silberstein (yearly neuro check). We are also trying to get him in for that OT eval mentioned above. We also have to visit Empire Vision to get him some new glasses as his prescription changed again (more info about that later). And, we also have an IFSP meeting coming up next week. So, I'll have some progress reports from all of his therapists to share. I think we also may have to start scheduling updated evaluations for all of his EI services as we are beginning his transition out of EI and into Marcus Whitman's CPSE program. Good times.
Until next time,
Post a Comment