Friday, September 19, 2014

Our Special Needs Journey:Part 19 - Everything and Nothing to Say

I am far too tired to have anything profound to say, but since I never do there were no expectations anyway, right?! Yet, so much has been going on and there are so many things I want to share, so much on my mind - ironically so much I can hardly articulate words. 

(I spend far too much of my time managing my time, lol.  This is the schedule for ONE WEEK - all the appointments, even with amazing PCA help, takes a crazy insane amount of coordinating/thought/time/brain space. The rest of my time is spent LIVING that schedule. I am wiped out.)

How am I always in survival mode? What is that "magic formula" for graduating from hardly surviving the chaos of each day to actually THRIVING in all the madness?!  It's been busy, as usual, and somehow summer is over and the school year is in full swing! We finished off our summer with a fantastic wedding (my cousin) and a family camping trip. 

(This is my momma with Brucie cheering as the bride & groom stood for kisses!)
(I think Dean had the most fun, between the indoor fish pond & his very own placecard with a table assignment!)

(The kids loved hiking to the waterfall while camping - & even climbed to the top but I have this heights thing and remained nervously at the bottom.)

(The view was worth the hike!)
(Hiking with papa while camping.)
(The kids had a blast with our ice excavation sensory bins!)

(I had a fun time setting up the OT room in the basement - and the kids are having a fun time messing it up!)

(Bruce is a future gamer I think - he loves the laptop a little TOO much!)
(Elijah snapped this cool shot of Bruce using his baby leash. Yup, I have one of those!)

Bruce started up in-home special ed with our new school district and I am floored at his progress! He has new words almost every day and is such a delight. He's clever though, and keeps us all on our toes!

We saw the GI specialist this week and she's sending us to a new allergist who specializes in FPIES and works with toddlers.  His poopy/rash issues may be due to acid in foods (such as fructose in fruits). We will need to start a very long process of elimination diets to determine what he is intolerant to but the end result should help with his allergies, asthma, tummy troubles, and even his hearing!

(Bruce can throw a pretty epic tantrum, here he is at the doctor hiding IN a drawer because he was upset. He proceeded to get MORE upset when he could pull it closed himself while he was in it. One cannot help but laugh.  He tried to put Dean's shoe on and could not so he gave it to his sister. One she got it on he started applauding! Always entertaining!)

I just thought this was cute. Hard to believe only a few minutes later they were both awake and terrorizing each other and destroying the house!

 (The kid loves the zoo...)
(...but look how tuckered out it made him!)

Dean and I are passing the time at Children's Hospital while waiting for his room to open up. He is pretty obsessed with this felt taco and burrito set we scored in the gift shop! I am, however, still craving some real tacos after eating a hundred pretend ones!

(Poor kid is so miserable he never even ate that popsicle. He just kept throwing up instead.)

Dean was sent by GI (gastroenterologist) to the hospital for an overnight inpatient clean out.  His laxatives at home have not been effective enough and he's been pretty sick (tummy troubles) so he needed to have his bowels fully cleaned out at the hospital.  In the 2 days we were there he needed 5 x-rays, didn't eat for over 48 hours, had an IV in and a tube down his nose to his tummy.  

They had to untape and adjust the tube 3 times and uses nitrous to get it in so he was coughing and puking a lot.  The kid was such a champ! I was totally bummed that they didn't use a catheter though as I had to clean up liquid poo pullups every 15 minutes for 40 hours. I should've brought a change of clothes for myself, eew!

But it was peaceful there compared to the chaos of home and we got to watch a bunch of movies and read books and play together. This kid is really fun to hang out with!

He's really into geography, especially the United States and capitals. Instead of a bedtime story we were up late coloring and labeling maps. Each state had to be colored exactly what it is in the Stack the State ipad game! He spends hours with that USA map dry erase board these days!

Found out he isn't able to process the protein in dairy, not the sugar.  So the lactose free cheater dairy was actually causing issues for him. After that dietary change and the clean out and a daily maintenance regimine we may be on the way to getting his GI issues under control! He does still have a sedated spine MRI to do to see if there is some nerve twisting or something like that contributing to his inability to recognize the need to go (and thus not toilet trained for stools).

He's been making some adequate progress at Fraser and starts yet another therapy there next week. He's killing it in homeschool kindergarten and can read like 30-40 Bob books and knows tons of his Word Wall sight words.  Made him a visual velcro schedule for his morning and night routines and that has been helping him complete tasks and transition better. 

Taylor broke her glasses. increased her anti depressant, and has 7 warts on her feet that are getting infected and spreading due to her scratching and picking at them.  The doctor would not freeze them off because she was concerned Taylor would get the medicine in her eyes or mouth since she does so much picking at her feet and chewing on her hands. 

Brought her in to GI this week as well since her tummy is ROCK HARD.  She's doing a major clean out at home and had some labs done.  Testing for celiac and some other things to identify what is causing the build up and the chronic abdominal pain.

Taylor has insanely awesome self confidence! She is always wanting photos taken of her :)

We may need to return to physical therapy for her hip/leg/tummy issues. At the zoo today she was physically in too much pain to continue walking before we had even reached the farm at the other end of the zoo.

Her asthma WAS really well under control, finally, and now allergy season is upon us. She coughs all day and night and struggling with breathing and wheezing. Remembering to have her use her maintenance inhalers, nebs, nasal sprays, and meds is tough enough. Upping them to the "yellow zone" feels like she's constantly taking meds. Since she hates to do so and does not cooperate I feel like we spend the entire day on meds!

The girls started working with a new in-home therapist and Taylor has a new therapy at Fraser as well. The schedule is getting pretty packed and as much as I coordinate appointments to overlap (when at the same place such as therapy at Fraser) I am exhausted managing this schedule and working out all the details.  The kids seem to be really benefiting from it all though so I will plug on for now.
(Julia speed-reads her final chapter of the book before returning it to the library book drop.  I love how much she loves reading, despite having several reading-related learning disabilities.)

At Julia's well-child check up we found out she needs glasses.  Her eyesight is worse than Taylor's and we need to bring her in to an eye place right away. Meds, glasses, therapies, man is life ever expensive! Wowza!

We did find out the results of her gastric emptying study and her stomach does NOT empty between meals. It is a lifelong disorder but helps explain why she is not hungry and struggles to eat enough. She also is not absorbing the nutrition properly.  We added a 3-times-a-day med for that and next week we return to the eating disorder doc to check her progress with that. She had lost a couple pounds last month but has held steady at that weight for several weeks now.  She still has over 30 pounds to gain to achieve her goal weight.

Phew, that brain dump already makes me feel lighter. :)