Tuesday, August 19, 2014

Our Special Needs Journey:Part 18 - Dentists, Doctors & Getting Answers

I love my kids but for just one day I would love to NOT to clean up poop.  Today I woke up to a bed covered in green, foul-smelling, liquid poo. Dean had crawled in with me in the middle of the night (which is really okay, in fact, I kinda love snuggling with my boys in the morning) and exploded through his pull up.  Before he was even cleaned off Bruce waddled up to me tugging at his diaper.

Dean's been going #2 so much lately his skin on his legs and bottom is bloody and raw so we stopped his doctor-prescribed daily PediaLax.  It didn't make a difference this week - it is equally messy, frequent, awful, smelly, and frustrating. His tummy hurts, his bottom hurts, he's 5 and a half and has to wear pull ups when he'd rather wear boxers. (This has been an issue for a long time and I know another hospital stay is just one tummy flu away.)

He HAS made TONS of progress using the potty, picking up his toys, using words not hitting, following his routines, not sneaking food, and really just everything. He's cooperating in his therapies and doing really amazing! 

We still need to follow up with GI and an allergist to get his tummy, poo, and food issues taken care of but otherwise he is really improving! So proud of him! 

Took Dean in for his routine echo and cardiologist appointment and got good news that his heart is doing so well he does not need another echo for 3 years! The Genetics Doc wanted the other 3 kids to have echos done as well to confirm they did not have the same heart defect Dean does (it is hereditary and runs in families) -- and ALL 3 OF THEM WERE TOTALLY FINE (heart-wise)!!

Dean doesn't mind going to Children's Hospital anyway though - he loves the musical skyway! Oh, and they discovered a fairy garden in the floor of the lobby as well. :)

Last week he ran outside to give Elijah a hug and tripped in the driveway that resulted in an urgent care visit.  He knocked 6 baby teeth lose and was bleeding from his mouth, nose, chin, arms, and legs! The clinic doctor sent us to the dentist and I was totally dreading it (remember last time he went?).  He actually did REALLY well with his x-rays and sat in the chair and everything. Amazed. Wow!

We did need to pull the front 2 teeth, which was NOT fun (I held him in my lap and he kicked me in the face twice) but the permanent teeth were not harmed and no stitches were needed. His speech therapist even said he was making his "th" sounds accurately despite the missing teeth!

Oh, he's also playing WITH Brucie more, like actually having fun with his brother, reading to him, laughing, and sharing (he used to scream and get frustrated and hit him all the time).  I also just bought him a ton of Bob Books at Costco because the kid is obsessed. He's reaaaaallly into reading right now and is actually reading the first few beginner Bob Books himself!

 Showing off his Bieber haircut.  The kid hates haircuts in general and buzzers in particular.  I tried to cut Taylor's hair, totally messed up, Dean wouldn't let me screw his up too, so we made an emergency appointment with the Hair Salon.  My girlfriend hooked me up with a great stylist who was able to fix T's hair AND cut Bruce and Dean's! I was BLOWN AWAY at how well Dean sat for his haircut (especially without a sucker and a kids movie!!)!!

Dean's favorite book is Chicka Chicka Boom Boom (and Chicka 123) and he wanted his room decorated with a coconut tree just like in the book. I found this wall sticker tree at Ikea and Dean was convinced it was good enough to be a coconut tree! We put restickable letters and numbers on the tree and I cut coconuts out of sandpaper. They are mid-fall instead of on the tree because Dean wanted them there.  I put the removable wall adhesive on the paper and he hung them up.  Last I cut his name out of rainbow colored paper, because he loves rainbows.  I will need to add Bruce's name too since they share a room!

Bruce is having kitty withdrawal (we don't get to see our old kitties anymore and Rocky sadly passed away) and loves Taylor's Fur-Real stuffed animal.  Not wanting him to destroy hers (bought with her birthday money) I was pretty thrilled to find a second one at the thrift store for $4! So was Bruce!

Bruce also loves to read, can you tell? :)  His speech has improved a tiny bit - he now says "ow" and "pease (please)" and uses sign language to ask for his diaper to be changed! Not too thrilled he learned how to say "no" because that is ALL he says anymore! haha I'm a bit puzzled by his frequent mystery rashes, scratches, and bumps.  He's crying a ton, saying ouch, touching his tummy and diaper, and has tons of bloody poops.

When I took him in to the doctor she didn't have any answers for the frequent diaper and allergy rashes.  I've seen GI, I've been to an allergist and done testing, stop sending me to other doctors and frickin HELP MY BABY! Ugh. Advocating for your children is exhausting!

Our pediatrician retired in July and we are needing a new one - a good one - to help us navigate our medically-complicated family.  This doctor was clearly not the right one for us - please pray the one we see this week is a better fit.

In other news, I am not ready for this sweet little baby to be such a big boy!!

So we've been having a HUGE pattern of lying with J, along with chronic disobedience and some pretty major depression.  She's a teenager now and that might be part of the attitude issues, I don't know. Social situations/misunderstandings are happening often and it's been really tough. It is difficult to see your child struggle so much with understanding why people don't like being around them or want to be their friend.

And the lying. Oh, my word, can she stick to a story.  I found her hair and scissors in the bathroom, I saw in her hair where she hacked it off, it still took a loooong time to get her to confess to cutting her hair. Even though she was caught red-handed. I guess she had a snarl bothering her.

She had chopped off so much we had to get her hair cut.  I've been wanting to cut it for a long time as it snarls easily, she is unable to rinse shampoo out herself, chews on it, and it gets into her food.  She was so upset about getting it cut (she has always had issues with getting haircuts and REALLY didn't want it short) that the stylist gave up and refused to finish -- I had asked her to also frame around her face to keep hair from getting into food. Sometime sensory issues really suck.

She's loving her Social Skills Group at Fraser and we've been learning a ton about knowing our triggers and creating a toolbox of coping skills based on what emotion we're feeling!

The big news is she had a gastric emptying study done.  We went last month but found out when we got all the way downtown that their camera was broken and we had to reschedule.  Good thing too because I was not aware it was a FIVE HOUR test!! Over a month later we went back and got all the way there again only to be told she was not supposed to have eaten.  I even asked when I scheduled this if there was any special prep and was told no. Ugh.

She went back that evening and did the test at that point.  Today I found out her stomach does not empty fully and that is why she is very rarely hungry and it is so difficult to get her to eat meals and snacks.  Combine that with Crohn's and no wonder she doesn't put weight on, absorb nutrition from food, or finish her meals.

Her medical doctor at the eating disorder clinic wants her to go back to the inpatient program at Melrose because she has lost a bit of weight and is very far from the goal weight for her age.  I called today to let them know the results of the gastric emptying study thinking this meant she did NOT need to continue all these time-consuming and stressful appointments at Melrose.  Turns out most people with an eating disorder develop this type of issue and doctor wants her to continue the program.

I'm going to try her new med for a month first before I even consider putting her back into inpatient, since we all really hated the last experience.  The Gastroenterologist said this was a lifelong problem and she will always need the meds to help her tummy empty and eat enough food. I am glad for some answers and possible solutions but so discouraged by seeing my children struggle so much. God give us all strength, please.

I know this is not our permanent home or permanent bodies. We were made for more than this world, God IS in control, and He will heal us all in His time. In the meantime it is tough to be sick and in pain so often and to watch my kids have so many painful and frustrating medical issues. Praying God uses it all for His glory.

   I made Taylor and appointment with the GI clinic as well. She's the only one who's never been and the one who complains of tummy aches the most.  Her tummy meds from the pulmonologist aren't helping enough and the laxatives are not cleaning her out either.  Her recent x-rays at the urologist showed she was totally backed up.

Her tummy is distended and rock hard. I do hope that helping her with tummy aches helps to improve her sleep and her overall attitude and fatigue as well.  She too starts a social skills group (next week) and has made some progress on identifying her triggers and trying to prevent meltdowns.  Some. Not a lot of progress, but a little. And that is encouraging.

Oh, so this. Car accident - jumped curb when someone honked at me (maybe it was someone else, never found out), got the van lodged on a rock, leaked all this fluid out of my car. That wasn't humiliating AT ALL...

Aren't I super lucky that there was a HUGE boulder there, a sign, and a metal sprinkler rod?! Yeah, that stuff all over the parking lot is transmission fluid. The frame of the van is bent and costs far too much to fix than we could ever afford so I'm praying the car holds up and is safe to drive.

Really did some major damage - to a vehicle I JUST paid a ton to fix up and just gassed up. Fortunately God always provides and a friend was kind enough to loan us a vehicle for a few weeks. Furthermore my awesome brother in law, who is a mechanic, is great at patching things together.  The muffler is held on with zip ties! But it drives and for now that is the important thing. I'm grateful for a working vehicle and am trying to find money in the budget to finish the repairs on both our vans.

I have to reflect on all the ways God has met our financial needs - the kids are in the therapies I previously could not afford now that we have the resources! Our burdensome mortgage on a falling apart home is behind us. We have food in our tummies and so much more than we could ever ask for. Thank You, Lord, for your provisions and undeserved blessings.

I'm really encouraged by all the good things going on and love that we are getting unpacked and settled in! Some of the routines and visual schedules I've created are helping a lot and I LOVE LOVE LOVE having PCAs helping out so much! It has made a tremendous difference for me and for our family!

I love my view when I walk the dog!