Monday, July 7, 2014

Our Special Needs Journey:Part 17 - Genetics Studies, Therapies, & Doctor Visits


If I have been MIA as of late it is for good reason! Busy & overextended don't begin to describe life right now. Still so very many appointments, volunteer committments, and packing. I'm now in the crunch-time zone. We move in LESS THAN ONE WEEK. [I've moved by now, that is how far behind I have gotten on this blog post.] There's so much to report, I don't even know how to organize all these thoughts. So I'll attempt to update-by-kid. It has been so difficult to make time to blog that more time passes and more things happen, haha!

--------------NICOLE-----------------

May 28th quietly marked my 30th birthday. A sweet friend dropped these roses off on my birthday! Note to hubby: See how easy that was?! Your wife only turns 30 once (I will however be turning 29 many times)! I did enjoy a fun night out with friends at a piano bar AND treated myself to a facial (my first!).

I finally went to the doc for my back pain/finger numbness and had a THREE HOUR MRI.  I am soooo glad I found that I don't just need to default to surgery (as I already had back surgery less than 3 years ago). I did some steroids and that helped, as did a chiro massage.  Now Dan and I just need to make time for physical therapy and regular chiropractic care and that should help, over time, lessen the pain.  [Moving, cleaning the old house, and setting up the new home have not been kind to me though - ouch!]


We've officially started several therapies at Fraser and I am a bit obsessed with these wall toys -- I want some in our house!!

----------------------- BRUCE ------------------------------------------






Here's Bruce in the waiting room. He's in a waiting room of some kind a LOT. He is adorable, no?! He sure helps pass the time with his goofy antics. 

Bruce got his first haircut -- but it took a Dum-Dum sucker to accomplish the task! I'm wanting to keep his hair long, minus the whole "mullet" thing he had going on.

Bruce receives only 2 special ed classes a month through the summer with the school district so his teacher recommended a full eval and more frequent services.  So I've got him on the waiting list at Fraser! :) [Scheduled for October] The school psychologist was able to witness one of his tantrums and agreed that it was abnormal (i.e. more theatrical than is typical at his age), appears very social-emotional rather than sensory, could definitely be related to frustration over not hearing well, and isn't just "because he's a spoiled baby." But he's so darn cute and entertaining and adds a lot of fun to our lives!

A lot of puzzle pieces fit together after his visit with Audiology and ENT at Minneapolis Children's this week [2 weeks ago now]. He has about 10% hearing in his left ear, maybe less. In his right ear though he hears very well, 85-100% depending on sinuses/stuffy nose. He has a crushed eardrum (is crushed the word the doctor used??) and a narrow eustachian tube in the left side which really limits his ability to hear out that ear - everything he does hear is muffled. Just a birth defect/born this way.

Tubes are not an option as he has no fluid in his ears. No surgery is needed at this point. The best tactic is aggressive speech therapy and learning and teaching him sign language so that he can communicate, express his needs, and be less frustrated. Also, although his adenoids were not enlarged the doctor did notice he has a crazy stuffy nose. Yes, he does snore. Yes, he breathes mostly through his mouth. Why yes, he does have food allergies and eczema. Yes, he has an inhaler and nebulizer.  No, I can't ever get his nose clean - it is so sore he even wakes up from a deep sleep if you touch his nose. 

So we've got an appointment with an allergist and are going to start a food diary and try to pinpoint all his allergens and intolerances. Since he has lost weight every month (I am missing those fabulous chubby cheeks) we can assume he also has some GI issues like his siblings. Helping him breathe better is a way we can maximize his hearing abilities (like when you've got a cold and a stuffy nose makes your hearing muffled).  His official label is "hard of hearing/partial deafness."  

I think the tough part is seeing the bloody scabs and wax in his ear and watching him pick at his ear. I know it bothers him and I just feel sooo bad. He had more bloody diapers today and I know I have to find out the culprit but it is so hard to monitor his foods like a hawk when I am unpacking our new home and there are 12 kids running around [my 4, Beth's 2, Thuy brought her 3, and the new neighbor kids were over].


 (It was sweet going to an appointment with JUST Bruce. We enjoyed reading stories in the waiting room and looking out the window at the city.)

(Strawberry picking with Papa)
---------------------- DEAN --------------------------------------------

Taking Dean to the dentist is a special kind of torture for the two of us. I've tried every tactic but this is just one of his areas of struggle sensory-wise (it is pretty typical for a child with autism to resist grooming, especially brushing teeth).  We've had "happy visits," he's played with the equipment and chair, tried our great dentist who gave up and sent us to a pediatric specialist. We ended up sedating him and doing his xrays and cleaning when he had oral surgery last September (TEN modified root canals - VERY expensive out of pocket costs!!).

This time holding him down and bribing him did not work. They broke out the big guns and we strapped him down -- it is like a surfboard type cot that goes on the dental chair and his arms are strapped down by the wrist then he is swaddled in large weighed blankets the velcro shut, like a straight jacket.  Tears, wiggling with all his might. Not successful, he just kept biting the fingers of the hygienist. It was heartbreaking, as a mom.

Then comes the scolding over not flossing and brushing his teeth well enough. I pick my battles. A lot of things are a battle - toileting, meds, chores, eating, getting dressed... It is exhausting being the bad guy all the time. It's hard to have my child hate me simply because I clipped his nails. Everyone tells me how sweet my children are - and I AGREE, but I don't often get to be the one to enjoy them.  I'm the one fighting the battles with them. I have to do all the tough parenting stuff.

Here's how forgiving my sweet boy is: getting into his carseat on the ride home he wraps his little arms around my neck, squeezes tight, and says "I love you, Mommy, SOO much." I love you too Dean Bean.

(He totally loved picking strawberries!)

His tummy clean out isn't really going well.  We've got him in pull-ups 24/7 due to the mess (you don't really need details to get how gross having him on laxatives is) and he's abandoned using the potty altogether. He won't even pee in it anymore. He's not getting much better as far as the clean out is concerned either, leaving me a bit worried I'm missing some part of the puzzle.

He saw his developmental pediatrician this week though and she said it was going to take a good 6 months to get the icky old poop out and for his tummy to start feeling better. She also added some meds for seasonal/outdoor allergies and a chewable lactaid pill so he can digest dairy better. I've got him all set to see a nutritionist this month.  He's got the same weight issues as Julia but we are finding lots of medical reasons to connect the dots (this info may help Julia as well).

He's talking SO MUCH and so clearly - and I love all the things he has to say! I am so proud of his progress! He LEARNED TO RIDE A BIKE!! Oh, and he had summer camp at the Nature Center and loved it. I stayed the first day (no other parents stayed at all, but I was concerned - plus he needed his pull up changed often), his PCA the 2nd, and then he was on his own the last day, like the other kids. The teachers said he did great! He's loving his therapies at Fraser and is on the waiting list for several more still.


 (The kiddos are skyping with their Canadian Pen Pal Katie - I love how much fun they are having!)
Julia and Dean had their follow up at the Genetics Clinic. They are running more tests on Dean that will take 4-5 months to get the results. The Doctor is certain there is an underlying genetics issue connecting all the kids and their similar issues. It is amazing what the medical world is capable of these days!

 (Dean and Bruce are singing songs for me at the Nature Center while waiting for Taylor to finish up her camp.)

(Look who can ride a bike now!! Yes, that IS a Dora bike -- he loves his hand me down bike just as it is an did not want me to spray paint and redecorate it!)

------------- JULIA --------------------------------

Julia had her intake visit with our new in-home family therapist. The girls and Dean will share a therapist who will becoming out to our house 8 hours a week starting next week. I am SO excited about this - despite the extreme volume of time it will take out of our busy lives. This is where they work with just the kid one-on-one, just a parent or PCA to equip us to better parent each child, with the family as a group, or even with a sibling. The therapist will be able to see the family as a unit and really see the whole picture!

Oh, and she finally got in at Fraser for her Individual Skills therapy! These are all resources we have really wanted to use for years but could not afford to, or did not know existed. I am thrilled to be getting help and services now! We are, however, running out of blank space on the calendar to get all 4 kids everything they need scheduled.
(I think this Lucy statue at MN Gastro is pretty fun!)
She went back to her GI doc and I found out they have never done a lactose study on her. Since she has lost a couple pounds (when she is still 20 lbs short of her goal weight) her doctor from the eating disorder clinic feels there is still an underlying medical issue we haven't figured out. Bruce, Dean, and I all cannot do dairy so that seemed a logical thing to look at.

The study for it involves breathing into test tubes over several hours. It was actually kinda cool because it made Julia curious about how our body can emit gases and she was researching online all day - everything is a learning opportunity! We've got her scheduled also for a gastric emptying study. She is rarely hungry between meals and struggles to eat full servings. So the GI doc is thinking her stomach is never fully emptying which prevents her from feeling hungry. I don't know why these are not things they looked into already but I'm game for whatever helps us get her healthy.

(Bruce plays me some fancy music while I wait for Julia at her Melrose appointments.)

 She's not gaining weight. In fact I found a stash of hidden food in the wall under the stairs in our basement (while cleaning and packing) that she admitted she was hoarding there. Sneaking candy and putting the wrappers in this space between the stairs and wall isn't that odd but what concerns me is finding unfinished food - like full but opened yogurt containers and fruit and ice cream sandwiches. Lots of her pills. She would not actually eat her meds that we put in applesauce, she was dumping the applesauce out. Yup. 

--------- TAYLOR -----------------------

(She's so good with her baby brother - I thought them eating a picnic IN the exam room was hillarious! There was no other time to eat and she just decided to feed Bruce his lunch while I was chatting with the Urologist.)


Taylor's abdominal x-rays showed she's pretty backed up. Like crazy, crazy constipated, poor girl. This is increasing bladder spasms and contributing to nighttime wetting. Outside of that the Urologist says it is more behavioral than medical so it is something they hope to tackle and deal with at Fraser in her Skills Therapy.

Her skin-picking has gotten pretty extreme -- look how many she has on just her face alone! She will bite, scratch, and pick at her skin until it bleeds and then pick the scabs that form.  We have tried so many things - such as fidgets, nail polish, liquid band-aid and dry glue to pick at instead, velcro bracelets, etc. I wonder if it hasn't increased due to more anxiety and stress for her? If so, can her new in-home therapist help with this?! I am eager to find out, as her scars are significant and even her sleep is interrupted because she is picking at her legs and making them bleed.

She did a summer camp that involved TONS of biking and loved it! I am really proud of her - she was so exhausted at the end of each day but just loved it! Getting worn out physically like that actually makes her so much more cheerful and less prone to melt downs.

Her and Bruce were also seen together at that Genetics Doctor last week. He is certain it is genetic but also thinking a lot of health issues may be from our home -- not only the black mold (there when we moved in, hidden under a layer of sheetrock to hide it) but also possible lead paint residue/dust. So I am so relieved we are moving!

(Here are the boys cuddling with Rocky, their favorite kitty. We are happy he has a new home with a friend - and that we can visit him & Cornball -- already have!!-- and I am happy to have less pets to care for.)

(Here's what Bruce does while we wait for the girls at their PT/OT/Speech, a last snuggle with all the pets, and that's one of our awesome PCAs, Elijah,
showing off how difficult his job is! Julia and Dean won't even let him leave!)



(Bruce is proving that a baby gate won't hold him back! Yes, he CAN indeed crawl underneath it. Sigh.)