Tuesday, October 28, 2014

Our Special Needs Journey:Part 20 - Surgery, a Broken Leg, & Other Updates

Somehow another month has passed since my last update and once again I am too busy living life to write about it. I do so love to write and reflect on all my blessings! We sure do have fun here! But oh so much to update. I'm really needing encouragement so if you read this insanely lengthy post in its entirety and are able to say a prayer or commiserate that parenting is hard you get a cookie!

I had a cholecystectomy 2 weeks ago and feel SOOO much better sans gallbladder! (That's my myriad of pills post-op. Although most of those are just ones I take normally - so purty.) I knew I had developed gallstones during my pregnancy with Bentlee and they caused some pretty major pain while I was pregnant with Bruce but things quieted down after he was born.

I did some testing but wanted to hold off on surgery since I was nursing and Bruce refused to take a bottle.  After an insanely painful ER visit I couldn't get rid of that gallbladder soon enough! I will admit it was inconvenient to spend a week doubled over in pain and most of another recovering from surgery but so glad to have it behind me!

Otherwise busy with the expected - settling in, setting up the OT room and schoolroom, being mama - and the unexpected - fixing both vans, Bruce breaking his leg - the usual.

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

Dan has wrapped up softball for the year - he plays in a church team and a work team. Here's Bruce at his last tournament cheering on papa. Oh how I adore his dancing! He heard the music the deejay was playing and just started to dance. Within a few minutes a bunch of kids had joined in!

 I just LIVE for that face!

 Chair racing!

 Elijah loves taking selfies with Bruce! He's one of our AWESOME PCA's, he mainly works with Dean but all the kids adore him. (As shown by Bruce's grin in the photo.)

I pretty much love homeschooling any age/stage (yes, it has challenges or times I am drained, as does all work, but I truly love it) but this little-kid stage the boys are in (Tot School and Kinder) is such a blast. Here's Dean playing with sight word magnets and Bruce has a pom pom sensory bin (with tongs, a light up cup, and laminated do-a-dot printables).  The only downside is how short their attention span is compared to how long it takes to clean up after them! Haha

Here's how I know I married an amazing man: Snuggling with his boys while watching My Little Pony. This guy is just the best.

I found this shape and color sorter at the thrift store and paired it with colored stacking barrels I scored on the same trip.  Both boys LOVE it - Dean found a wooden toy hammer and they sort the pieces and break open the barrels. I love when a toy keeps them safely entertained for so long!

He's been rebelling against colors and I wasn't sure if he knew how to match them or not.  I walked away for just a few minutes and returned to this. Turns out he knows how to match the colors, he just doesn't always WANT to. Smart kid.

Simply because I think it is soooo stinkin cute I have to share a photo of the Olaf hat I got for Brucie for winter.  It came with matching mittens. Oh em gee so adorable!

The boys went to the park to play while I set up for a party (see below - later on in post) and had a blast on the slide.  So much fun, in fact, Bruce broke his leg!

He loathes hospital bracelets and removes them within minutes every. single. time.

It's pretty tough to see if you don't know what you're looking for but that curved black line is the fracture on Bruce's tibia.  He woke up from his post-play-time-nap and was crying and refused to put weight on his leg.  He was able to show me where his owie was and I know from when Dean broke his arm at this age that bones break fairly easily when they're young.

This kid is too much. I love spending time with him and he is such a blessing to me! In this photo it is almost 3 am and he has just had a stint put on in the ER, he's in pain, we've been there for several hours, and he is SMILING!


He slept a couple hours before waking screaming in pain again, so we headed off to the Orthopedist for a real cast.  A dozen colors to choose from and he selects the exact same lime green his brother chose when he was 2 and broke his arm! Funny.  His cast is above his knee, just below his crotch. They also gave us a boot so he can walk still.  Only 2 weeks and we can take it off and get some x-rays. Babies heal so fast! I am so grateful it was not worse! Of all the reasons I could be at the ER with my baby, this one is not so bad!

By the time we finished at the ER and the bone doctor he was out cold! Poor tired kid slept right through his allergist appointment!  I am SO excited about this allergy place we were referred to.  The Gastroenterologist, Pulmonologist, Audiologist, ENT Dr, Pediatrician, Nutritionist, and Behavior Therapist ALL agreed that getting his myriad of allergies until control was CRITICAL to his health and behavioral changes.

We were sent to a practice that specializes in FPIES (Food Protein Intolerant Enter-colitis Syndrome) and Fructose Malabsorbtion (among other things) AND works with children as young as Bruce. I couldn't get in with the person we were referred to so I saw his partner.

Turns out we HAVE to see this one particular guy - he is the #2 Asthma and Allergy Doctor in the nation! I was told Bruce is a pretty rare, specialized case.  About 1% of little ones with food and environmental allergies are especially challenging to diagnose and treat.  This doctor was very confident Bruce does indeed have many health issues related to allergies and can be helped by this other doctor.

He personally called the guy we need to see and set up an appointment for me -- I go there next week! #2 in the whole country and he is located less than an hour away from us!!  Praying for answers.

It is really important to determine WHAT Bruce CAN eat and what exactly is causing so many of his issues as it is impacting his health, diet, and behavior.  This kid is actually allergic to the special formula that was created to be allergen friendly and pretty much EVERYONE can tolerate.  No lie. It has corn syrup in it, which he cannot have. Crazy.  The doctor said my breastfeeding him is the very best option at this point! :)

He loves books. Loves them. Devours them. Here's Julia reading with him - because he said "sit" and "book" and she obliged! He has so many people who love him in his life!

He gets confident enough to stand up on the cast using furniture.  A week later, he is finally walking without assistance - and moving pretty fast!

No, I don't have plans to cut his hair at this time. His rockstar hair totally fits his personality - and it looks cool when he plays the drums!

This kid loves selfies - here's a pic I found on my phone from my brother's going away party (he was deployed overseas).  Couple of cuties!

Sensory bin play! This was mummy mud for Halloween - but he likes pretty much every sensory bin he's ever had put in front of him!

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

Taylor started a social skills group at Fraser - finally - and is really enjoying it. We also made some progress on her skin picking, which is pretty great. :) Her blood tests from the GI doc were all negative for things like gluten and dairy, so not really sure what's next with her tummy troubles. 

I am so proud of the progress she has been making regarding tantrums, melt-downs, and transitions. She will still be easily upset if, for example, I ask her to do a chore or take a shower. But she often turns it around -- she will change her attitude, get up off the floor (where she was crying and kicking), stop crying, hug me, and do the task she was given. I'm not saying there are never challenges, but this is the most progress that has ever been made and I'm so proud of her for that!

We're heading into a tough time of year for her asthma but it is really well controlled right now. The trick is keeping up on the meds - which is way harder than it sounds. Dan, the amazing husband and father that he is, usually ends up taking care of refills. Due to having both a primary insurance through Dan's work AND our TEFRA MA there are always complications to filling prescriptions. Somehow it is always a headache and also very time consuming.  

Wait. This is where I should quit whining and praise the Lord for His provision of both medicines that keep my child healthy AND the financial resources to afford them. Wow, how easy it is to grumble despite my blessings!

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

Julia started karate and is really enjoying it. It is so neat to see involved and excited about a sport/group activity! I think it has the right balance of being with others but building skills individually. She has always struggled with anything athletic due to poor coordination and short attention span.  Any amount of criticism is taken very hard so team sports have been a challenge and she ends up feeling poorly about herself. Since she is able to go at her own pace and achieve belts and stripes on the belt in her own timing she has been really encouraged by karate.

The tough part is when autism DOES happen to come into play and impact an activity.  Recently she was upset with the instructor over being critiqued (which is exactly why we have a teacher - so we can LEARN) and began to pout.  Refused to say "yes ma'am" (a rule of theirs) or re-try the move. She shut down, ended up crying and pouting and not cooperating.  

This may seem like no big deal but when you are not able to control your emotions and unable to use the skills you've been taught (listen to authority, shake it off, talk about it, etc.) it can cause conflict. And embarrassment in front of peers in the class. People are looking to me to "fix" it, however changing how my child is wired is not some simple task.

Hayden was keeping Bruce company while Julia was in class - I loved watching them dance!

Julia has been taking meds for her stomach-emptying issues but her weight gain has stalled.  Her doctor at the eating disorder clinic would like to continue seeing her and having her meet with the entire team but I've got nothing on the calendar.  All the focus on her weight and diet is really discouraging her and I think she just needs a break for a bit.

Now that she has Medical Assistance the dentist she has been seeing for years will not allow us to be patients there since they do not accept that insurance.  So she's got a cavity to fill and I need to find a new dentist.  It's on the to-do list along with getting her glasses and braces.

She hasn't been in Speech Therapy in awhile and I was surprised when her Developmental Pediatrician referred her for a re-eval.  Turns out she is in need of some very aggressive therapy in this area. There was a time when she didn't talk much at all, which we overcame.  A time when her pronunciation was unintelligible; now we can understand pretty much everything she is saying. A time when she thought I had actually started a fire because I was "burning a CD on the computer" and now she understands those types of sayings.

We have come so far it is hard to hear how much more work needs to be done. Her social emotional language is the primary concern.  Like tone of voice, body language, eye contact, alternate meanings, other things I can't remember. When she talks to you her speech is either that she is speaking to a 2 year old or she IS the 2 year old -- a lot of baby talk.  There are plenty of reasons behind this but mainly it is just one piece of her autism diagnosis.  It is a huge hindrance in her social life.

She is in a weekly group social skills class at Fraser but the Speech Therapist said that isn't enough. At this point we will need to add several hours a week as she is at an 8 year old level at best. Actually, she was hiding under the therapist's desk during the evaluation because she was upset and didn't want to answer any more questions.  This is a gal she's seen for years and really likes so I imagine starting over with a new person (this lady doesn't have any open sessions right now) will be slow going.

I don't know how to explain my disappointment.  Basically, it feels a bit like the first time I learned Julia has Autism. I'm no longer new to the game but somehow the acceptance that this is a forever thing still stings.  Honestly, her diagnosis re-eval a year and a half ago is what started my spiral of depression.  We've worked so hard. I have, she has, Dan has, we all have. To be told "yes, you've come so far, you've made progress, that's wonderful, but you still have so much work to do" is... exhausting.

Couple this with the intense in-home family and behavior therapy we have been doing and I am feeling -- I don't know what the word is -- crippled? Bummed? Angry? Sad? Tired? Pissed off that my children have to struggle so much? Weak? A failure? Unequipped? Overwhelmed?  Yeah, I think I'll go with overwhelmed.

All the things we do - PCA help, homeschooling, endless hours of therapies, fidgets, an OT room in the basement, a million reminders a day, visual schedules, reward charts, doctor appointments, social games, special sensory-friendly clothing, weighted blankets, squeeze hugs, meds up the whazoo - they are all good things but they don't change the way their brains are wired. (I do NOT feel anyone needs to CHANGE either, just that I equip the kids with the skills they need to be successful in whatever life they choose.)

God made them in His image and they are perfect. I don't attempt to "cure" autism because it isn't a disease (more on that thought in this other post) but I do struggle to accept all the challenges. Never ever that my precious children are a burden but rather that all the appointments and therapies are a lot of work.  I kept thinking it was just a season of my life - a short one. Like "hey, this time next year we won't need to spend 24 hours a week in therapy." But I am beginning to understand that this is a really long season. Like Minnesota winter.

God is perfect in His timing in all things.  This too is according to HIS time.  His plans are perfect - for His glory and our good.  This is no different.  I can trust He will equip us with all we need to navigate the struggles that come alongside having special needs.  I wouldn't mind some prayer, though, as I am just really run down, tired, exhausted, and discouraged as of late. I find that I am far crankier and meaner than I want to be.  Okay, I don't want to be mean at all but the point is I really need to hold my thoughts captive and give them to the Lord, as bitterness is growing fast.

Here's Super Elijah and Hero Bruce (he's got a Captain America shirt on today, it's a different hero all the time). I have a bit of a superhero fondness (despite removing my own cape) and even helped throw a superhero themed party!

It's pretty cool that Dean is being "Super Dean" because he is afraid of all superheroes.  He does love rainbows, however, so I got him this cape to help him when he is afraid of something.  He wouldn't wear it for the longest time and today he decided it was pretty neat. It made me smile.

I made slime for our sensory bins the other day and the boys play with it practically every day. Makes a mamma feel good for putting in the effort to make them something they love.

I think our days are too long, too full, and too tiring because BOTH boys ended up trying to take a nap on the shelves of the thrift store! LOL
Dean started another therapy at Fraser (you start on a wait list and add things as therapists have availability) and Bruce has been keeping entertained in the waiting room with the cool play table.

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

My boys watching the "Peanut Butter and Jelly Time" song on the iPad with Hayden and Sophia. Hey look, sharing, victory!

                Working on State Capitals and coloring a map with Elijah. My son is brilliant. :)

Dean had a sedated MRI to look for a tangled cord - like some kind of knot in the spine area. I dunno. Too much to keep track of these days.  Basically his Gastroenterologist ordered the test because he is unable to poop in the toilet.  He does not recognize the sensation of needing to use the potty and it comes out far too thin to control.  Besides a dampened sense of needing to stool (I was told this is common with autism) perhaps this is another contributing factor.  

I have not heard back from GI yet so not sure if any next steps are needed or if anything can be done but hope to find out soon.

He bounced back from anesthesia quickly and decided to push the bags out to the car in the wheelchair instead of riding in it! Crazy kid, where does all that energy come from?!

I admit I was fearful at first of homeschooling Dean because his attention span is very short, he has poor impulse control, he is rigid in his thinking/play/routine, very full of energy, and about as cooperative as you would expect a 5 year old boy to be. He's not fully potty trained and has a plethora of sensory and social issues so I was afraid I would not be "enough." Dan and I prayed a lot before opting to try Kindergarten at home (each child has different needs and homeschooling my girls is not an automatic for other kids).

Turns out, I LOVE it! We really do have a blast. He loves BOB books and learning sight words.  He can read quite a bit now and is a geography whiz! I definitely spend more time setting up for and cleaning up after most of our learning tasks than he spends actually doing them, but that's pretty typical, right? :)

I love that my 4 children are all in different stages of development and that I have the joy of experiencing them all at once! I do feel confidence now in my ability to school Dean at home because God fills in the holes.  Whatever I lack I have support to get him the resources and help he needs. We have PCAs that all bring something different to the table in regards to their time with him and helping him learn and have structure.  He spends a lot of time in different therapies at Fraser and that is making a big impact. Plus, aside from the crazy amount of trouble he gets into, he is a true delight to spend my time with!

Can someone please help me come to terms with how OLD he suddenly looks?! This child that was so prayed for in the womb, such a blessing to our family, that still needs Pull-Ups and had a pacifier way too long, how is he this big?! Oh, he did happen to get that homemade slime (made with glue) into his crazy long Bieber hair. It was BAAAADDD - so he had an emergency haircut. Now he looks years older all of a sudden!

Practicing his State Capitals and showing off his new big boy haircut before bed. I find the footed jammies he MUST wear hilariously out of place...

Not sure how he does it, but this kid can sleep anywhere. 

Emma Krumbee's Apple Orchard - duck racing, barrel train rides, petting zoo, apple picking, wagon ride, hay bale climbing, scarecrows, rope maze, pumpkin picking, tons of playground equipment, pony rides, wagon rides, a picnic - it was a fun day! I love fall!

A perfect Bruce-sized pumpkin!

Determined to carry his own pumpkin!

Kid in a candy store or Sleeping like a baby?! Bruce slept through our trip to Minnesota's Largest Candy Store! It was legend(waitforit)dary!

Bruce may be allergic to apples but he was very happy to nurse under an apple tree! How can anyone say breastfeeding a toddler is gross?! Look how beautiful this is!

Froot Loops graphing! Sophia was the best participant, the boys just wanted to eat the cereal!

Twin Cities Harvest Maze!! Went with Gramma and Uncle Robert - we love doing this every year! A crazy huge corn maze, huge dry corn pit (think: giant sandbox), hay bale maze, wagon rides, trikes, inflatables, best petting zoo ever, live music, the like.

The map for the corn maze!

Thuy hooked us up with free tickets to Nick U at MOA and Dean got to be one of the "big kids" because he was tall enough to go on rides with his dad and sisters.  I got to enjoy some kiddie rides with Bruce - he was NOT a fan!

Found these adorable printable roads on, what else, Pinterest.  Printed, laminated, and taped down in the kitchen paired with cars and race tracks -- awesome! (Oh, and thanks Thuy for all your help!)

Storybook pumpkins! The kids did a great job but Julia, ever the budding photographer, was the only one to snap a photo of her character pumpkin WITH the book.
My view from my backyard hammock. Have I mentioned yet how much I LOVE fall?!?!

 Glad I got the little kids to help rake the leaves - this yard sure has a lot of them! :)
 This sweet big sister is guiding Brucie through the hay maze at the zoo.
 C'mon, you know that's funny!