Wednesday, February 11, 2015

Our Special Needs Journey:Part 23 - January/February Update


Since it's been awhile this is, as usual, pretty lengthy ( like anyone could ever describe me as pithy!) so I will sort by child to keep it as simple as possible.

----------------------- BRUCE (& ME) ----------------------------

The highlight of January for Bruce and me was our trip to Texas! We flew down a week shy of his 2nd birthday, barely qualifying for him to fly free. It was sooooo great to see some friends and family that live there (Denton is in the DFW area).


I put together a couple busy bags to keep Bruce entertained on the plane - and while we were there. Everything could be played with while sitting in an airplane seat (even with both of us sharing the seat one of the flights and not able to put the tray down). Here's a post about what was in all of them!





 The Mnpls airport has an arcade and Bruce promptly found the Batman game! He also loved this pop-up book I got from the thrift store and gift-wrapped.


Playing with the Fiddlestix on the plane.

We stayed with my best friend Erin - I can't believe I have a daughter the same age as I was when Erin and I first met! So here we are, all these years later, with kiddos of our own!


Peregrine (3 1/2) and Bruce were instant buddies! That's them holding hands in their carseats on the ride home from the airport. They checked out animals at the pet store, threw rocks in the stream at the park, played with sensory bins, and watched the fishies in her aquarium.



 Caiden (almost 11) and Bruce bonded over electronics. They had the sweetest connection! :)
 
I also got a chance to catch up with Katy (& her daughter) - can't believe the 3 of us have been friends since middle school!

My cousin Amber and my auntie Barb also call Denton home - I loved getting to hang with them! BTW, Dentonites, be sure to vote for Amber Briggle for City Council. You know she'll rock it!


Bruce loves all things transportation - he was enthralled by the airplanes, various trucks and vehicles, and even the el-train in the background! SUCH a great time just Mommy and Brucie - and great to get a break!
I'm not sure the feeling is mutual - Bruce loves Piper a bit TOO much!


I'm officially nursing a 2 year old now! His birthday was February 2nd and I am really loving motherhood right now.


Bruce returned from vacation talking a bit more! He's also totally potty training himself, which is cool cuz I'm pretty lazy. LOL.  Here's Bruce at Children's Hospital - we actually kinda love this place! He had his check up with the Pulmonologist and we added a med and stocked up on Epipens. The Singulair is REALLY helping and he has had very few allergic reactions or wheezing or breathing episodes.

I'm in awe of how rich, full, and enjoyable my life is. The support is now in place and well established. Dan changed shifts at work awhile back and we really enjoy this new schedule. His sleep quality is better and I love having him take the kids to appointments 2 mornings a week.

I feel the burdens lifted and am able to enjoy my time with my children so much more now. Schoolwork is fun again, we have time for board games, I can even squeeze in couponing and an organizing project here and there. I had been struggling with some pretty weighty depression for a long while and have finally emerged. It feels to good.

God has been so faithful to come alongside me and meet me exactly where I was at. It is through the cracks in jars of clay that His light shines through.  I'm broken, so undeserving of his grace, and absolutely humbled how He cares for each and every detail of my life. I'm grateful He has carried me through the times of overwhelm and exhaustion and am so encouraged and excited to see where each day leads us!


At my annual exam the doctor noticed this lump on my breast was still there. Last time (almost 2 years ago) we assumed it was a clogged milk duct or a cyst. Either way, with time, it would dissapear on its own. So she felt strongly I needed to have it checked out.

I went to Piper Breast Center for a full diagnostic exam.  I learned these things about mammograms:

- They are crazy expensive. I had to pay the remaining $2,600 of my deductible to be seen. At least it's taken care of for 2015!
- They are not nearly as painful as I imagined. Uncomfortable, sure, but I imagined worse. I mean, smashing boobs between glass plates, that just sounded bad.
- You cannot have a mammogram done when breastfeeding. It "looks like snow" in the photograph, I'm told. Luckily the boob with the lump is the one Bruce doesn't use. The one without the milk. LOL
A bit awkward getting just one side into machine...

Nothing's wrong, of course. They said "You have a large amount of fatty tissue. You have fatty breasts.  See you in 10 years when you turn 40." I'm grateful for my health and all, but I already knew I had fat boobs - I didn't need to spend $2,600 to find that out!


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

Dean has been having more frequent seizures, staring spells, and night waking.  The Neurologist previously determined the side effects of seizure meds outweighed the benefit for Dean, however if he continues to have negative brain activity that might change.  Praying there are no worrisome changes.


It is soooo adorable how much the boys get along now! They are watching a "surprise eggs" video on YouTube. Why is that so fascinating?!

Last week we had another follow up at the genetics clinic.  We've done 3 levels of testing so far - growing chromosomes in a lab, lots of blood draws, months of looking at their genes.  They mostly have been focusing on testing Dean but we have no answers. Cohen Syndrome was found but that does not explain his "differences."

The Doctor said it's tough to know for sure, but he would estimate the odds that our children will ALSO have children with neurological and gastrointestinal issues and autism spectrum is greater than 50%.  Good thing we know a lot about living with autism :) There is one final level of testing that can be done - Whole Exome Sequencing - but it is in the beta stage, requires blood from all 6 family members, and is very pricey.

I've opted not to explore any further at this time (thus semi-retiring from the genetics clinic; we don't have to go back for 2 years!!).  No information would change how we care for the kids or any of their medical treatment at this point. So, you know, I'm good with where we are at. We know there is a genetic link but nothing glaringly obvious.

Dean has struggled with Failure to Thrive his whole life.  Even as we learn to limit allergens he does still have a lot of tummy issues. At the genetics clinic his weight was down to 37 lbs - down from the 43 we were so excited to have him at 6 months ago.  He'll go in for a follow up with the Pediatrician this month since the genetics Doc was concerned.

 The boys are playing with tiny little erasers in random fun shapes (dinosaurs, cars, a globe...) by putting them in a Target Dollar Spot mailbox (intended for Valentines) and a pill case. Entertained them for over an hour - eternity in ADHD/toddler world!

Dean and his buddy Hayden had a blast at the ECFE Valentine's Day Dance - but spent most of it in the Motor Room. I love that he has a best friend and is learning to share and cooperatively play!

 So Dean was talking to "Canada Katie" on the phone with me this morning and heard her say she forgot her wallet AND her lunch.  He proceeded to fold up play money dollar bills and place them in his toy blender with pretend coins. He said he was making Katie a "Money Smoothie" because she had no money and was hungry.  This kid is just delightful!

Oh, and I asked for 10 minutes to eat my breakfast and THEN I would do a puzzle with him.  He was TOTALLY convinced that watching BOTH his 5 minute sand timers at the same time was equivalent to 10 minutes. He really didn't believe me when I said only 5 minutes had passed. That kid.

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


Taylor's picking has always been this bad, but for awhile she had been focusing on her arms and legs. I'm bummed that she's back to picking at her face but we are working on distracting and redirecting when it happens.

We finally replaced her broken glasses! And she's adorable. She's really into fashion design and has been begging to learn how to sew. So, I'm breaking out the sewing machine and doing some simple projects with her. I'm not too experienced myself but that's what Pinterest and YouTube are for, right?!

She has been complaining of tummy aches for quite awhile now, daily, and the omeprazole, fiber and laxatives are not helping.  She had an ultrasound and x-ray done last week and later this month will have a colonoscopy and endoscopy. I used to think "oh, now that you have to do a chore you conveniently have a stomach ache, yeah, right." but when she is missing out on play time because she's in so much pain, I have changed my thinking. I am praying for answers.

Her re-eval of her treatment plan with her Fraser therapist didn't go too well. In her Social Skills Group she spends the majority of the time rolling around on the floor instead of sitting up and participating. There is a struggle to get her to articulate her feelings and to find something that motivates her (like for a reward system).

She has not only not made progress but has regressed. Sadly, Julia has as well in several areas. We had our annual PCA evaluation and Julia's hours actually increased significantly (I think largely due to more self-harm and violent behaviors).  I am, however, so encouraged by so many things. These are some pretty amazing kids, so loving, so creative, so thoughtful, and so much fun.

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

I can't get over how grown up Julia looks with her new glasses! She's got these large black frames that overwhelm her small frame. When she has her hair up she looks like Felicity from Arrow (um, totally obsessed with that show).  She looks so trendy! :)

Turns out she REALLY needed glasses - her vision was like 20/200. I had Lasik a few years back but I did have poor eyesight and I remember the first day I had glasses as a child. I remember asking my mom if everyone can read billboards on the roadside. I didn't know they could be seen from the car - and had always wondered what they said and what the purpose was.  It was like that for Julia - she was blown away!

Her visit with the Psychiatrist (he's at the eating disorder clinic she attends) went well - her meds have been increased and she will follow up in a month. Her doctor at Melrose referred her to an allergist so we brought her in for that.

Allergy testing was done and we found she is allergic to mold, pollen, grass, dust, cats, and dogs.  I feel like an epic failure as a mother for not knowing this for 13 years. It has only been recently, about a year, that she has really been having trouble breathing and that I even suspected allergies though. We no longer have cats of our own, but our roommate does. We've got a dog. We've got a yard full of grass and house full of dust. Good thing I own a Kirby vacuum! :)




Bruce's first time watching the Bird Show at the Minnesota Zoo was so fun! I think I enjoyed watching HIM more than the birds! He laughed everytime they flew over his head. He is at such a fun age & stage!
My son is a selfie addict! 


Thuy, Hayden, and Dean together weigh as much as a small adult female black bear, according to the scale at the zoo!
Well, Bruce is sick today, poor guy, and needs his mama to quit typing and go snuggle him.  Thanks for taking the time to be a part of our family!