I found these photos on my phone and think they're hilarious. All of these college mascots were doing the valet parking at Children's Hospital a few weeks ago when the boys had their Urology appointment. You can imagine how outrageously EXCITED the boys were to give high fives and hugs to all these random characters. What a cute and random treat for the kids!
So I thought I'd start this blog with some cuteness before getting all serious-like on all of you.
There have been a few discussions over the past couple of weeks since the boy's physicals and all of their checkups that they'll be getting between Aug and Oct. Apparently after the wellness checkup, the pediatrician (I'll refer to her as Dr H) decided she wanted to consult the boy's old developmental doctor from the hospital (from the NICU follow ups) to discuss this whole business of Speech Apraxia. Since it's a neurologically based disorder, Dr H wanted to make sure she had the boys covered medically to support them. Well, the doctor from the hospital (who remembers the boys fondly) said she would like the boys to have much more intensive speech therapy if Apraxia is the case. Dr H was pretty upset to see that Brady had lost his private speech sessions from insurance.
So... then the two doctors got to talking about the boy's overall development. Some of the challenges they still have, some that are better, and some that aren't. From this discussion, Dr H realized that when and if a new doctor reviews the boy's medical/developmental journey - there seems to a missing diagnosis for the global issues. Now that they're four, and there are so many apparent "issues", typically further testing is pursued since "prematurity" shouldn't be the reason anymore. She said this to us during the appointment when referring to the boys inability to be on the size charts. I brushed it off at the time.
While this was going on, I myself found the question "so, what's their diagnosis?" from medical staff meeting the boys for the first time. I didn't go into details about the Urologist specialist, but he had quite the concerned "scientific" pondering on his face when he found out that neither of the boys know how to urinate on command. Typically late-potty training is a battle of wills, where this literally seems to almost be a motor dysfunction. Like the brain telling the mouth how to talk, or to eat... see the similarity? He was particularly interested to see Jax's g-tube and braces and then of course.... the great babble came out of Brady's mouth. Let's just say, the end of the conversation was "you need to talk with your doctor about further testing".
Yes, how interesting was it that I called Dr H to discuss this, as she was calling me.. to discuss "this". She admitted to overlooking a global cause for the boy's development struggles, because like most people who know the boys - we're all just so happy and excited to champion them on with any new development. And honestly, there were a lot of medical necessities going on for a good part of each year. But now that they're four years old, it's becoming quite apparent that there are some issues we need to look into. Basically... a reason why the boys are still so behind, even given the great strides.
Dr H believes the boys may have a genetic disorder or something along the lines of mild CP. It has taken me 10 days to be able to write that out and sound matter of factually, so please bear with me. We are starting the journey of specialists, and we may or may not get an answer. I'm not sure which scares us more. The good news is, whatever "it" is, it doesn't change anything except getting the boys more help. They are still the sweet, super cool kids that they are.
Hey, we'd love to just continue believing that all these struggles are just a "bad start" and it will all be gone sooner or later, but the fact of the matter is... it might not. Our kids can't talk to other kids. Jax can a little bit, but Brady can't even tell anyone his name. Or my name - or anyone else's for that matter. He can't say his age, what color shirt he's wearing or even what shape you're holding up. Nothing. He has the expressive vocabulary of an 18 month old baby. Ouch. The truth hurts, but it is the truth. Jax is around a 24 month old.
There's obvious medical issues with Jax, but now it's coming down to the fact that he can not physically chew food - no matter how hard we've been trying. He's starting to regress the harder we push and he's starting to have a hard time swallowing now the more we push. Talking and eating shouldn't be so hard. There's the obvious low muscle tone, weak right side and braces for Jax, that shouldn't be lasting so long to get better.
Neither boy can properly kick, jump, balance or do things like cutting paper or holding a crayon.
All this after 3+ years of therapy. I guess their birth trauma, APGAR scores and continued poor growth may or may not be at play here too - there's so many things out there now that like to give me anxiety worrying about, so Google is off limits. I guess this is the time to rule things out and let the doctors have a look at it all.
I have paperwork being sent from the Child Development Center that once I send back (I'm sure it's everything just short of DNA requested) a plan will be set in place for a review and testing of the boys. They will most likely meet with a team set up of a Developmental Pediatrician, a Pediatric Psychologist and a Speech Pathologist. We'll see where we go from there, but I believe Dr H will be calling me again this week to see if she's decided to have the boys see a Geneticist simultaneously as well.
I can't imagine any of this process going quickly, but it has been started. I feel good about it some days and terrified and horrified other days. I spoke with the NICU followup nurse for a phone number today and she remembered the boys and how hard we were working on MAMA when she last saw them at the age of 2. I seriously sobbed. That poor woman felt so bad, and it really wasn't her fault, but it broke my heart.
We know we have the most amazing little boys and are SO thankful they are as happy and healthy as they are given their tough road into the world. I'm working really hard at staying positive and knowing there are no quick answers if any.
So please bear with me. All we ever want to hear as parents are positive great things about our kid's health and development, so I'm sure you can imagine my aching heart. Jason and I just want what every parent wants - happy, healthy kids who don't have to struggle at the regular life things.
We still have tons of hope.