Saturday, August 1, 2015

Our Special Needs Journey:Part 25 - General Update for Past 4 Months

This is the longest I've gone between updates (4 months - I didn't think it was possible to be even MORE busy, but...  And I have spent all of the summer so far very ill (read these posts about getting pregnant - and losing the baby - and other complications).

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

Late June I brought Bruce in to our new developmental pediatrician (I've switched all the kids over to this great doctor at Children's Specialty Clinic and they each needed a full diagnostic appointment). His hearing has increased - the Eustachian tube that was originally narrow has grown as he aged. So, that is really wonderful news!

The Doctor said he's considering an Apraxia label (pending a follow up eval in 3 months) which is a motor speech disorder.  I'm not concerned because even in just the past couple months he has really expanded and improved his language! He's made so much progress and very much on the right track.

He's joined his siblings at Fraser and now attends twice a week for Speech Therapy & OT.  We also had our first Behavioral Therapy session today.  After a long qualification & diagnostic process we've finally begun our in-home sessions. This basically means that a therapist works with Bruce AND ME on some behavioral and sensory issues.  A lot if it is learning some appropriate parenting strategies & practicing putting them into place with the therapist present.  So much of what I'm learning applies to all the kids though, so it's a really worthwhile thing!

Can you believe these photos were taken only TWO MONTHS apart?  He aged a full year with one haircut.  Okay, I cut a bunch of hairs.  And I did a terrible job and cried for weeks.  But it doesn't change his vibrant personality, so I'm learning to forgive myself! :) This boy keeps us all so entertained - he is so full of joy.  Bruce is always bringing me so much healing - my cup runneth over.


Fantastic gardening buddy!                                            I can never get enough of his snuggles!

Showing off our wingspans on a trip to the Minnesota Zoo.


Like a boss.                                                                   Sleeping with an older woman.


                                                                                           Mommy-Brucie selfie at Zoo Camp!

-----------------------------  FAMILY ----------------------------

Elijah and Dean probably enjoyed Disney on Ice Frozen more than the rest of us combined!

Strawberry picking!

         Day date with my hubby - Twins Season Opener! 

                      These past few months have not been without their share of heartache.  Dan's stepfather passed away in May, after a very long battle with dementia, cancer, and other medical challenges. I am in awe of the strength my Mother in Law has and in admiration of her trust in the Lord.  Just a few days later Dan's grandpa passed away as well.  Although he lived a long and full life and is rejoicing in Heaven now, we will still miss him.  He was a very good man and had such a gentle nature.  Dan is so much like him.

My grandparents celebrated their 50th Anniversary this month.  They blessed us by bringing the whole extended family to a lake cabin to celebrate with them.  Although I was in the throws of severe morning sickness I still managed to have almost as much fun as the rest of my family! The resort was beautiful and so was the weather!

We also lost another baby & had a change in roommates.  I attended a homeschool conference in April, Dan's been busy with softball and work, a friend is here from Canada visiting for the summer, and we've packed the calendar to the brim.

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

 Dan helped Julia catch her first fish! While we were at the Lake Cabin Julia celebrated her 14th birthday! She fulfills her role as the eldest to a tee; she's a wonderful big sister!

She's had the most eventful 4 months of us all. We quit going to the eating disorder clinic and I opted to have her gastroparesis managed by her GI doc.  There is a conflict of her "meal pill" with another med so we had to have monthly EKGs.  There's never been any heart issues but it wasn't worth the risk so we ditched the anxiety meds after 6 years.

She was seen at the Neurologist for staring spells & an ambulatory EEG was done.  Since the findings were normal, she's been falling asleep all day in almost any setting, she's having trouble breathing at night, and zoning out, she was recommended for a sleep study.

First she wore an atigraphy watch for 2 weeks then did an overnnight sleep study followed by a daylong nap study.  She does have sleep apnea with several episodes of  pauses in breathing.  The sleep doctor was hesitant to give her a Narcolepsy label since it follows you for life (like it even goes on your drivers licence) so the plan is to have her tonsils and adenoids removed, practice strict sleep hygiene for a month post-op then repeat the sleep study.  Stimulants would help but we hesitate to put her on them with her weight issues.

The ENT said her tonsils and adenoids both look great and he wouldn't need to do the surgery.  So I asked him to talk to the sleep doc.  It's over a month later and I'm still in limbo - another call to make I guess. 
She has complained of being unable to breathe through her nose (I can't either so I never really thought much of it) and actually waking at night because she's having such a struggle with it.  The ENT doctor had her have nasal surgery.  A turbine reduction I think it was called.  He said it shrank her turbines significantly but she still says she feels the same.  

Such a sweet big sister!
                           Julia has been working SO hard at karate! Things like focus, paying attention, sitting still, accepting critique, and coordination are all huge challenges for her so I'm so proud of how hard she's been working on these skills! 

-------------------- DEAN -----------------------

 Dean continues to be delightful, entertaining, challenging, and brilliantly destructive. He's just the bestest! There is no better snuggler.  He's been doing AWESOME with potty training - almost no accidents.  Well, pee ones at least.  He pretty much never poops in the toilet. Which is gross but I'm now involving him in the process of cleaning it up. Ick.

The thing is I made Elijah clean this flour-fight aftermath up, so I was pretty calm about it.    
Dean's still crazy-freaky into maps. Here he's putting state-shaped puzzle pieces onto the matching state on his USA rug.  Below is him making me a color by number map to color.

Selfies with my son - I have NEVER thought he looked remotely like me - until these photos!


Dean is "reading" his Bible to me.  He's learning to read but he's not THAT good yet! :) My kids are oddly into surprise eggs (where an Easter egg has small toys inside) and Elijah got them like 200 plastic eggs.  They made a giant rainbow. Dean is also pretty obsessed with sorting things AND with rainbows.  This was a triple jackpot!

Dean attended a WEEK LONG summer camp at the Minnesota Zoo AND one at The Works museum (science program).  It was just 3 hours a day, not an overnight camp but still a long time to be away from home and in an environment like that.  And he loved it!


Taylor somehow manages to stay out of most of the pictures we take - she's always behind the camera trying to get Bruce to smile!  She also went to science camp - full day for 4 days, VBS, and is now attending a STEM camp for middle-school girls with disabilities.  

She too had a birthday this summer - in May she turned ELEVEN! I cannot get over this whole getting older, growing up thing. Make it stop!! :) She's really been into fashion design, drawing, and writing.  Look at that heartfelt and beautiful poem to the Lord!

She's been complaining of tummy aches for a loooong time now but nothing concrete was showing up in any of our testing.  Since I have IBS I've had her try my meds a few times and they really helped so the GI dr prescribed them for her and it is sort of helping.  She's really been struggling with "the blues." Tears out of the blue, at any point in the day, for very benign reasons.  I'm a bit concerned.