Thursday, January 8, 2015

Our Special Needs Journey:Part 22 - Post-Holiday Happenings

Happy New Year!

No "year in review" post (although in reflection I am proud of all our progress) or "resolutions" to share. Just an update on what I love to talk about most - my kiddos.

So if you're following our crazy-chaotic life you'd know it is not odd for me to go so long between updates.  Because, well, I'm crazy-chaotic-busy. I'm falling back into life after the holidays and wanted to share some pretty wonderful things happening in our lives!

[Side note - even when things are NOT wonderful I still share them. No illusions of perfection because God is at work in ALL times and ALL things. He is glorified in our suffering as much as our blessings. He promises perfection in Heaven and that there WILL BE affliction in our sinful world. I'm not complaining when I talk about the burdens. He may not bring every issue to a perfect resolution in THIS life (although at times He does and it is SO encouraging) but I am assured that He will ultimately. He is always at work.]

Bruce has had an eventful month! His crazy-cool purple cast is gone and he has re-acclimated himself to walking without it on his leg.  We returned to the allergist to do skin prick testing for almonds. The good news is he is NOT allergic to almonds and has a milk option for his sippy cup! The bad news is he hates it and refuses to drink it in any form.

For the most part I LOVE nursing, I do. There are a few times breastfeeding is physically painful. I'm not sure how to convince him to eat or drink other foods until he is fully weaned (which he is no where close to doing on his own). I'm not a fan of the whole slapping me in the face if I say no to boob. And I'm REALLY REALLY not a fan of the reactions of others and lack of support. I'm appalled how comfortable people feel saying hurtful things to me or telling me "it's past time to quit nursing."
[Here's a photo from this Fall. Breastfeeding a toddler is beautiful, not creepy. This is my photographic evidence of that!]

I never intended to become an "extended breastfeeder." I didn't set out wanting to still be nursing at 23 months. But here we are. It bonds us. It is a source of comfort for Baby Bruce and closeness for me. And with his outrageous plethora of food allergies it is a very real and important source of nutrition for him. I said from the start I would nurse as long as it is mutually beneficial and that is what we're doing. Please be kind to this very sensitive, very tired mama!

How adorable is watching a little baby read books?! He still loves The Very Hungry Caterpillar - his first favorite book!

So the really BIG news is that Bruce does NOT have Autism! He had a full team eval at Fraser in December and they determined that he has a significant speech-communication delay, mild developmental delays, as well as Sensory Processing Disorder but is not on the Spectrum. I'd like to say I'm cautiously optimistic since I was told pretty much the same thing when Dean was that age. But, I can't help it, I'm super happy.  Autism is not a BAD thing but can you fault me for being happy that Bruce won't have some of the challenges that come along with it?!

Bruce is really into Cookie Monster right now. It's soooo funny how he says "coooookkkkie, yom yom yom!" We're trying to develop an attachment object OTHER than my boob and he seems to like this stuffed Cookie doll, so that's good. He typically HATES blankets and kicks them off but is a big fan of the other kids' weighted blankets, so I ordered him his very own heavy blanket! It has Toy Story on it, which is another thing he's into. :)

 Okay, TMI GROSS ALERT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

It's a huge struggle to find out what is causing Bruce's allergic reactions. We're thinking dairy (not just lactose), rice, and fructose (even fruits and some veggies). I had no idea how many things fructose was in!

So when he eats something he shouldn't this is what happens. Sometimes his face gets pink around the mouth and cheeks right away, which helps me realize a problem right away. Sometimes though I don't realize there was a problem food until I change his diaper. In just minutes his bottom is covered in these hives and sores that break open and bleed. Any place that the bloody poop touches instantly gets raised bumps and hives (like when he touched the diaper and then his tummy and got hives on his stomach).

Since this time the rash kept sighhtly healing then returning again for 3 days I brought him in to the ER. 5 hours after the first photo it looked like this. 

 He's telling me to come sit by him. Seriously, so cute.

2 days later, despite NO bad diapers and none of his off-limits foods he still has these cuts and sores. I don't have a game plan for when this happens. I don't know how to take his pain and misery away. It is insane how easily he can get into foods he should not have (9 people live here plus all the PCAs, therapists, etc. that are here daily - it is difficult to not have every food he's intolerant to stay out of the house). And how many new things we discover are causing problems is pretty crazy too.

This mild pinkish rash on his mouth and cheeks was from ketchup with high fructose corn syrup. That's how sensitive he is. Would you please pray we determine the source of the pain, eliminate problem foods, and he outgrows his allergies? Can you blame the kid for wanting to nurse when it's the only thing not causing him pain?!

Bruce LOOOOOVVVVEESS Christmas trees. I mean, he is really fascinated by them. Decorating the tree with the kiddos was precious - it looked magical!

 The Frog Hopper at Nick U is perfect for my thrill-seeking son!

 Snapshot before the ride starts -- at MOA Nick U with sweet Sophia!
 How regal and purty is our doggy?! She's older, has arthritis and has been limping and using only 3 legs lately. Not looking forward to the vet bill but how can I NOT bring her in when she's clearly in pain?! She's such a sweet dog.

Here's Dean building a "Leaning Tower of Letters." I snagged these alphabet pop blocks at the thrift store and 3 letters are missing (but it comes with 3 animals so those can be placeholders).  I love playing these with him because it is an opportunity to work through some of his rigidity.  He MUST be alphabetical (or numerical, or rainbow order) in all things so missing 3 letters forces him to find a new way to play.  In this photo he made patterns with colors but later his Fraser therapist and I convinced him to MIX UP THE BLOCKS - no pattern of any kind! He DID IT! There was some anxiety about it, but still....

After a 4-month growth culture of some kind (they drew his blood and grew something in the lab, I dunno) his testing from the Genetics Clinic is back. Although they did determine he has something called Cohen Syndrome (nope, I'd never heard of it) it is not enough of an explanation for his "differences" (their words).

So we are going back for MORE testing. I'm not sure what they are looking for at this point, as we have done 3 rounds of testing already, but I'm told the research is important in the grand scheme of things.

In December Katie came from Canada to stay with us for a couple weeks. She's pretty much amazing and it was so fun to have her here! She is so sweet to be a pen pal and FaceTime Friend for the kids but I'm not gonna lie, staying up all night to talk to a girlfriend like I was in middle school was pretty fun!

I even brought her with for my boudoir photo shoot and she helped me feel much more comfortable! And something I never, ever say (pretty much not in my entire life): I felt pretty. It was fun to have my hair and makeup done and especially fun to look through all the photos with my hubby!

The remnants of my over-the-top photoshoot makeup and fake eyelashes were still on for 80's Night at The Shout House later that night. And yes, I did dress up. And yes, I was the only one in the place who did (except the girls at my own table), lol!

Seeing the Canadian Pacific Holiday Train & concert in St Paul was so fun I think it may have to be a new tradition! Poor Dean was so overwhelmed by it all. We were very close to the concert car at first and it was far too loud, bright, and chilly for him. I walked with him down to the engine of the train where it was quieter and the crowds were smaller and that helped.

Dean has been sick A LOT this winter.  It used to be when he got sick he was REALLY sick so we've been fortunate this year that it hasn't been worse than it is. He is very easily dehydrated so he did need to go in for fluids one day. We missed a family Christmas party because the kid had pinkeye, influenza, and an ear infection all at once.

As you can see from the above photo, taken in the waiting room of the ER when he went with his also-sick friend, that he's in pretty good spirits even when he is under the weather! :)

I think this photo is from visit 2 of 4 to the ER in December. When he looks like that you KNOW he must be sick, because even with a fever and puking he's normally off-the-walls hyper.

KayTay and TayTay

Taylor's visit with the Pulmonologist today went well. Considering it wasn't supposed to happen at all. Um, yeah. Dan & Beth helped me get all 4 kids fed, bundled up for sub-zero weather (schools closed!!), and buckled in the car. I made the 40 minute drive and parked and corralled all the kids into Children's Hospital, up the elevators (Dean took his boots off outside and Bruce pressed the alarm button) and into the clinic.

That's when the receptionist informed me our appointment was NEXT Wednesday and her Doctor was out of town. So that happened. I'm fairly good about managing the schedule but there ARE a lot of things on the calendar...  They were able to fit us in with another doctor. I was oddly not even embarrassed or phased by it at all. Am I getting more chill or just too tired to care anymore?!

Some changes were made with her allergy, asthma, and tummy meds and she needs to be seen back at GI soon. Otherwise asthma is pretty well controlled and not waking her up as often at night. 

But can someone PLEASE tell me how to get her to STOP PICKING HER SKIN?! She creates these cuts and then picks at the scabs. The scars are huge craters and one of the sores on her forehead appears to be infected. 
He loves big kid shoes!

Julia was excited to be promoted to her yellow (gold?) belt in karate! She's really been enjoying it and the instructors are very understanding of her whole can't-not-fidget thing. I'm also so spoiled by her foray into cooking! She helps with meals all the time!

She's even EATING the meals! She is still 8 lbs from her most recent goal weight of 85 lbs and we need to focus on high-fat healthy snacks to add to those meals. The meds for gastroparesis to help her stomach empty are helping to make her hungry. She eats seconds and even third servings sometimes!

Her vitals are good, overall her body is recovering from the years of Failure to thrive. I'm so encouraged by her weight gain and health improvement!

Her Doctor at the eating disorder clinic has referred us to an allergist for her chronic rhinitis. I wonder if part of how her nose picking began (which is something her therapist says will never stop - it is ingrained in her) is that her nose is always running and she can never breathe through it? Crazy how each doctor visit simply leads to another!

Having a teenager with autism AND depression is a new cocktail for me; I find myself in uncharted waters often. How do I equip her to navigate these raging waters when I have my own mental health issues? Thankfully Jesus can walk on water and calm the storms. I know He cares for her and will equip us both.

We were able to get in with the child psychologist at the eating disorder clinic right away, which is pretty awesome since mental health visits usually schedule out for months.  She may need a change of medication or some talk therapy.

Katie & Taylor are Selfie Queens.
Julia's having a staring contest with a fish at the Zoo.
Gold belt promotion in karate!

I LOVE Mall of America (well, pretty much all shopping centers) at Christmas! 

 How adorable is this scrapbook Taylor made us for Christmas?! Julia also made a really beautiful one for Dan & me. So sweet! I so love their creativity!

My rockstar husband turned 33 just before New Year's. He celebrated by taking the kids to the new Night at the Museum movie because he's amazing like that. Dan's van broke (just 2 weeks after putting $700 into fixing it) for good so we've been needing to drop him off/pick him up at work some days. One time Julia came with and he showed her what he had been working on in the warehouse. Can I just say how much I appreciate this man? Seriously, there are no words. Oh, and he's growing a beard which is crazy sexy!

Can I encourage you wives to be praying for your husband and for your marriage daily? Tell your man how grateful you are for all he does and how much you respect and appreciate him.