Wednesday, July 18, 2012

4 yr physical and tons of info

I meant to update yesterday, but I've been sick, bleck. So I apologize for the extremely LONG post with so much info. The boys woke up at 5:30am on Monday vomiting profusely (so Jax's sicky whisperer tummy was spot on Sunday). The boys got better through the day and all was better. Until last night when I got violently ill for many hours into the night. I always find it interesting that when I catch the boy's GI virus', it's so much worse. Is it because I'm an adult? What gives?

So today was the boy's last day of summer school speech. We'll miss Miss Trish and her adventures. Her final report to go to the therapist in the fall said that Brady was a hesitant talker, perhaps because it is so difficult for him (his confidence is starting to get damaged knowing people can't understand him) however, when the activity is very exciting and/or includes a motor component, he can't help but express himself verbally :)
Part of Jaxon's report stated that he has intelligibility to be approximately 85% for single words and 65-70% for 2-3 word utterances. Listeners do continue to remain dependent on the context of Jax's language in order to understand him though. I asked why Brady's report didn't have "statistics" and she said the Brady's vocabulary wasn't far enough along to measure yet... but it will. She's always so positive. She described the boys in her report as personable, energetic, happy and cooperative little boys. Who could ask for more? Love them.
Brady's speech therapy with Mr Nick has been denied, so now he has no coverage until school starts in 8 weeks - ummm, not cool.

The boys had their 4 yr old physicals today. The doctor's office called this morning and asked us to come in 30 minutes earlier since there was so much to discuss, and wow, we had a 2 hour appointment.
First thing, I'll share their stats:

Brady - height 38 1/4" (10%) weight 29lbs (3%)
The doc agreed that he may have dropped up to a pound in the last two days with his illness on Monday, but that would only bump him to the 5% range.
She said he's following his curve since birth nicely and to keep giving him his Pediasure bedtime snack, but otherwise there's no concern for his physical growth, he looked great and is just a small guy - always has been!

Jaxon - height 36 1/2", weight 25lbs
Obviously Jax is not on the charts, but the doctor did say his height-to-weight ratio isn't "too far off" like the GI doc said as well. Obviously we'd all like to see him gain a few more lbs. She said his height may not be indicative to his long medical challenges, but rather he's just meant to be very short. I thought Brady had an extreme growth spurt, but it turns out, Jax just didn't grow much, so it just seemed like it. Doc doesn't think there's a genetic "issue" with Jax's height either which is a good 2nd opinion to have - because he's preeetty short.
So I wonder if Brady will always be so much taller? Time will tell, but they've definitely pulled apart this year. I was an extremely short kid until high school. I was only 5' tall freshman year and got up to 5'6" by senior year. I have remained scrawny my whole life though. I think Jay's family said he was pretty small as a child too, and he's a normal sized adult (5'10" 175lbs), so I guess we'll see with time!

The boys got their 4 yr old booster shots. Jax got an extra one (Pneumococcal) to make up for the one he was showing a resistance to when tested (which is ironically pneumonia related). He'll get a blood test to see if this one sticks the next time we're at the hospital in August for a check in with the dietician and feeding psychologist. Fingers crossed the results are normal and we can be done with that.

We had a long discussion about the research paper I dropped off to the doc last month about supplements (fish oil and a high dose of vitamin E) helping the neuro area of the brain with Speech Apraxia. She said she researched every area she could think of (Neurologist, Developmental Pediatrician, Pharmacy and other colleagues) only to come up with the answer that it needs to be researched more, and that the dose the paper calls for is extremely and dangerously high. She said the monitoring that the boys would need at that high level would be pretty extreme and she's not willing to put them through that without better/more research showing that it would be worth it. So she came to a dosage of 300mg daily that she'd be comfortable, but I would need to review their diet and see how much they currently get. So I'll need to do a little leg work and figure that all out. But she encourages their continued use of the fish oil which is very safe with multiple benefits.

Here are the parts of the appointment that surprised me. The boys need to see a Urologist. When the doc was checking their genitals, they each were extremely squeamish. I told her that they have always been that way when wiping the penis area with a wipe. She looked closely and said that there is typically a "slit" at the end of the urethra where urine comes out of. The boys each have 2 holes, like there's a small piece of flesh between them instead of a full slit - it's called Meatal Stenosis. She doesn't know if that has anything to do with their squeamish behavior when having the area wiped, or contribution to potty training issues (although she thinks they're just not ready) but she'd like a specialist to review to make sure everything is ok. She first asked us if their urine stream was angled. We laughed saying that would mean they'd have to pee without a diaper on!

Which lead us to the conversation of potty training. She wants us to continue keeping them interested in the potty and inviting them in and everything. I asked if I should be "pushing it more" and she said it's not possible. If the boys just don't understand how their body works and relate it to the potty, they will never just get it until their bodies are ready. She has no fear that they won't, they just need time and we should never associate punishment with it.

The boys need to see the Ophthalmologist and get a hearing screen again. Since the boys have such a speech issue, the nurse couldn't get an accurate test for either. The doc wants to rule these issues out again given the speech disorder continuing. I told her I hate getting my hopes up that there's a way to "fix" their speech without years of intensive therapy...

The doc faxed in a Rx for Jax to get a new pair of braces fit, so hopefully the ball gets rolling on that whole process soon. I think it takes 2 full months, and he's eligible through his insurance in October, so I'm glad the first part is out of the way.
We had a talk about Jax's "Chronic Lung Disease" and how it is now officially "Asthma" that will most likely be a part of his life forever. Although, his daily inhaled preventative has done amazing things for him since January, so I think he will have a lot less problems this winter. Jax is in the Asthma Program through the doc's office, so his monitoring should go pretty good.


A and W mom said...

Thanks for the update on your amazing FOUR-year-old boys! (Our kids are all growing up so fast!)
Glad your pedi was really thorough in discussing everything with you; hope all the follow-ups go well and that things with the urologist are a relatively easy fix.
~ Amy M.

Kimberly said...

Like everything, there was good news and some harder news to take in. Your pediatrician sounds amazing and seems to be very proactive and on top of your boys. You are an inspiration and such a great example of a mom who will never accept anything negative and always search for something to get your little men where they need to be. I can't wait for their high school graduation and you see what amazing men you have raised.

Love you and those boys!! xoxo

Lulu said...

It sounds like you have such an amazing team of doctors and therapists helping you guys out and that is just awesome. Not only that but you are an AMAZING advocate for your boys, they are truly blessed to have a Mom who researches and asks questions and does what is best for them. You are truly an inspiration.
~holcoml :)

Michele said...

Boy, you just never know! My first was at least 2 inches shorter than all her peers through preschool and now is almost 50th percentile, and the tallest kid in her group since they were babies ... is now shorter than she is! It's SO hard to predict for any given child what their growth is going to do in any given year. I'd be surprised if Jax stayed so tiny height-wise relative to Brady - aren't they identical? Such good news on the general healthiness of the boys! And you are an awesome mama - how could THEY ask for anything more? :)

Little Wonders said...

Thanks for the update. I think they're doing amazing, and I'm glad you have such an involved and attentive pedi, too. Of course, you need to give yourself a HUGE pat on the back for how far they've come ... because you've invested so much time, love, and energy into them.

Kelly Bartlett said...

I just happened upon your blog and have been reading through your posts. Sounds like you guys have been through a lot. Your boys are adorable! Glad to hear they are both doing so well!