Thursday, April 17, 2014

Our Special Needs Journey:Part 12 - Test Results, Sleep Studies, & Foreclosure Update

Things seem to happen at lightening speed in this house! Here's a little update on each kid:


Last Sunday Taylor had a sleep study done at the Children's Hospital sleep clinic.  Her dad spent the night with her.  I thought it would be a nice opportunity for Dan to get some quiet, dark, uninterrupted sleep himself - but I guess Taylor woke up a LOT.

Not sure I could sleep with all these wires on either! We weren't given too much info - just that she hardly entered REM sleep and when we return in a couple weeks we'll discuss a CPAP machine. She's started an iron/vitamin C/probiotic combo each night for restless legs.

I think the biggest bummer was seeing how much she picked at her scabs in her sleep. One of her stims is to scratch at various places on her body until she has created a bloody gash. Then she picks at the scabs all day long.  I counted today: 32 owies. I'm gonna make a velcro bracelet and anklet for her to scratch on instead. I'm not sure if it will work, or be comfy to wear, but maybe I can reduce her self-harming this way? (She likes the way scratching feels to her fingers - not the scratching on the skin itself.)

Since she has already had her tonsils and adenoids removed when she was first diagnosed with sleep apnea several years ago, that's not going to be the answer.

Taylor is already using asthma and allergy meds (nasal spray, singulair, omeprazole for reflux, etc.) so that is not the solution to her sleep woes either.  Not sure how she'll feel about that CPAP machine BUT her lack of quality sleep is affecting the whole family (okay look who's talking right?!).  She's been quite cranky lately.

I'm excited for her to begin services at Fraser (a local autism therapy place) soon! It is not a quick process and involves TONS of paperwork and diagnostic assessment appointments but I am optimistic it will be worth it to get them some of the more unique services they need.

She wasn't lying when she said there were a lot of wires!

SO not surprised to find all these guys have restless legs syndrome. Also, I loved catching Bruce stealing his brother's book and marker after Dean fell asleep. Hehehe

The sleep clinic appointment resulting in that sleep study was looong and NOT so much fun! Blood draws needed, 2 very restless little boys. Dean set off the emergency alarm at the hospital - but WHY would you put a glass emergency exit door RIGHT IN FRONT OF a Snoopy statue at a CHILDREN'S hospital?! #poorimpulsecontrol

 I love the one of the boys "forehead hugs" on the slide!
What a fun waiting room!


I'm so proud of her progress - she is eating a few extra bites even when she feels full and remembering she needs a snack (for her sticker chart!).  Some weight HAS been gained in the past 4 months of treatment, however she yo-yos and isn't progressing fast enough for the clinic's standards. To me the 3 lbs she is up now - and her healthier appearance - are promising.  For the eating disorder treatment team it's time to get aggressive.

Julia is NOT happy about inpatient treatment - she will get no say in what she eats or when. The food is put in front of you and you eat it. The end. She will NOT eat food that touches, has even microscopic pieces of a food she dislikes (such as mushrooms or tomatoes), or that she didn't chose herself.  She has never even slept alone. Her social/emotional age is closer to 7 or 8 - but she will be living for a couple weeks with peers who are in teens and 20s.  She IS different than most in the program. I am hesitant.

Today her developmental pediatrician & psychologist agreed with the her treatment trio that inpatient IS the best option. Her kidneys and liver are close to shutting down. Her bones have lost density and are very weak. Her blood pressure and heart rate are concerningly low. Her sensory problems with swallowing and lack of appetite are things they feel they CAN help with. She's got so much on the calendar it will be a challenge to schedule.

She's also in the process of becoming a patient at Fraser -- and loves therapies of all kinds, so social skills therapy could be fun for her. She's made great progress in physical therapy as well, but still in 6th percentile for coordination, and 12th for strength. I don't know how they test that, but that's what her PT gal told me today.

--- DEAN ---

His blood was drawn when he was sedated for his colonoscopy so the results of his Fragile X test are already back, and those were negative.  His chromosome culture they were growing died off - so today (it's 4am so I can say today instead of tomorrow) I'll take Dean and Julia up to Children's for blood draws Genetics ordered.

He is LOVING the PCA attention he's been getting! This help has also enabled me to get him into a healthy and consistent sleep routine. Yay! The iron he needs to take for RLS is mixed with orange juice (and his other pills are chewable), so he's the easiest of my kids to get to take meds.

The results of his biopsies came back and he is lactose-intolerant and we'll need to begin a dairy-restricted diet.  He only eats like a dozen foods and most of them are dairy - yogurt, cheese (in a quesadilla, on bread or crackers), sour cream, chocolate milk... We're in for a big challenge.  Perhaps it will result in fewer underwear being thrown away!! (eew)

--- BRUCE ---

I love, love, love this kid but transitioning him out of my bed is not going well. At all. He won't even nap if he's not being held. Since I'm generally getting 2 to 5 hours of sleep already I need the quality of sleep to be great - and with his somersaults and thrashing around the quality is dirt poor.  I mean, the lack of sleep is taking a huge physical and emotional toll on me...

He's had a couple of in-home evals with Help Me Grow - special ed teacher, speech pathologists, occupational therapist, public health nurse... His new special ed team is coming out this afternoon to tailor his IEP (or whatever the under-3 thing is called) to him and establish his goals.  We're starting a twice-a-week class for him (and me) to work on his delays and sensory issues. I'm not sure how I will work it into our schedule but I know early intervention is important.

His shirt is truth -- it's 4:30 am and I am typing while I nurse him back to sleep. I'm not sure it's just that he cannot self-soothe back to sleep because his tantrums are outrageous.  It may be his tummy, those new molars coming through, or trouble breathing well.  His cough and wheezing sound awful and even nebbing him isn't enabling him to breathe better out his nose. #yawn


Our short sale package, including a signed purchase agreement from a buyer I really like, has been submitted to the bank.  They were willing to review the information and will be sending an appraiser out soon to verify the value of the home. I'm so grateful things are moving in the right direction but this process takes a lot of trusting God.  We do not know when or if we will close on the sale and the offer is accepted. We will need to move much earlier than expected if so.

This gives us less time to save money and live rent free.  Less time to pack and sort and purge and organize. We have no timeline for finding a rental home and no new homes for our pets.  Dan and I are both planners and our anxiety is high.

I'm not sure how to handle all these obligations or what more to let go of. Most days are very stressful and require more effort than I can give. My body and brain are shutting down. I'm struggling to find balance and am not able to make time to care for myself (like sleeping, eating, that sort of thing).  This insomnia is not helping.

When God is leading I don't always know where I'm going but I continue to follow and put my trust in His plans.  I may not know the ultimate destination but my tourguide does and is in charge of our trip!