Monday, August 13, 2012

This was a tough post to write.

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".

Noted.

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.

11 comments:

Dawn said...

I've been following along for awhile now. I'm not even sure how I found your blog. I want to take a moment to say how blessed the boys are to have you for a mom. You have fought for your boys and done amazing things for them. As for the boys, they have made progress and will continue to do so.

Melinda said...

I've been following your story since we were on the same trimester boards on the bump. I doubt you remember me, but I've been rooting for you & your boys for all these years and will continue to do so.

They are so lucky to have you. We'll be praying for you guys.

Triple Threat said...

Always in our thoughts, very long time follower as well, I think possibly before I had my triplets... Regardless,good luck through your journey. You are tough and you have written that beautifully. I'm sorry you're facing even more struggles and my hope for you is peace and strength. I look forward to reading more updates!! If you need anything please write!

Amber Ellen said...

I've followed your blog off and on since the boys were born. You've inspired me so much! Reading your blog helped lift me out of darkness when my son was born with health issues. Your writing gave me courage to face the future.

You guys have beat a lot of odds already. If anyone can keep going, you can. (((hugs))) Hang in there, Annie!

Michelle said...

Sending up some prayers. It is so hard when we just cant "fix it" for our babies because we are the mommy and that's what we do! Praying for wisdom and for continued strides with your boys.

Heather said...

I'm so sorry, Annie. I know you have hope and always will. Please remember that these boys are so lucky. You are their champion and protector. If there is anyone in this world who can get them what they need, it is you. Of that, I have no doubt. Now you will find a name for this. And with that comes answers and plans of action. So while this is scary as hell, it will also bring you answers. I love you and will be thinking of you and the boys even more. xoxo

Rachel said...

We all know that your boys are fantastic little balls of personality, and always will be, regardless of any diagnosis. I'm praying for them!

BreS said...

I've followed your story since they boys were born, my Jack was born a week before your twins. While our journey's have taken us down very different paths/diagnosis's - we share the same heartache for our boys. Please know I find strength from you to keep on keeping on. What a wonderful mom they have to fight so hard for them. You are in our thoughts and prayers that things will get better!

Doubly Blessed said...

Love you guys. Praying for your continued strength and PEACE as you journey forward.

Michele said...

Aaaw. :( But you're right, it doesn't change who they are. I know your heart aches to think of the road ahead, but just try to stay in the moment, and know that they ARE making progress, and they already have - and will continue to have - a very good life. We all have challenges, and theirs are just closer to the surface than most others. Thank goodness they have their parents as their advocates and they live in a country with early intervention and ongoing support. And the best thing of all? They have *each other*! :)

Little Wonders said...

Oh Annie :( I'm just catching up on your blog now, and I can only imagine how heart-breaking it must be to face all these scary possibilities. I'll be praying that you get some answers, and that they are much better than the ones you are currently anticipating. In the mean time, I continue to delight in the "happy and cool" kids Jax and Brady truly are!