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.
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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!
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.)
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!
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.
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! :)
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!
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.
removing my own cape) and even helped throw a superhero themed party!
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.
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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...
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.