Sometimes waiting is the hardest part

We went to go visit our oldest in Fayetteville last weekend for Parent Weekend at the University of Arkansas. What our 5-hour drive lacks in terms of restaurants and gas stations, it certainly makes up for with lakes, trees and fields of grass. No matter how many books I take or how many podcasts I think I’ll listen to, I usually end up just talking and taking in the scenes of nature as we drive. And while it might be hard to imagine now, sitting in 90-degree weather in Dallas, TX, hints of Fall were all around us in Arkansas.

I’m waiting for Fall to make its debut at home. I’m over the hot days. I’m tired of looking at the stores display all their fall and winter merchandise, as I wear a tank-top and flip flops. Give me the signs of Fall I experienced last weekend: the changing tree colors, the chilly mornings and late nights where you need a light sweater, the crisp fresh air.

Just like waiting for Fall to really arrive, we’re also waiting for our little to make more progress. The progress has plateaued and the waiting game for you kid to “do better” is painful.

I don’t like waiting, but I have no other choice.

Don’t get me wrong, I realize that slow progress or no progress is still better than regression. But if I’m being completely honest, the lack of progress in language is still my biggest concern. It was my concern before the official diagnosis when I was operating on my intuition that something might be wrong. And almost a year later, it remains my biggest concern.

Our most recent conversation with Dr. Kartzinel was on Monday. Juan drove to my school and I met him in the parked car so we could call the doctor together. The three of us are communicating about every 3 weeks, because the lack of language is just as confusing for our doctor.

“Hmmmmm. Why isn’t he talking? Let’s see ….” says the doctor.

I wasn’t in the mood to hear questions I don’t have answers for on Monday afternoon. My answers were short. My comments and questions were direct. My anxiety related to the lack of Jacob’s progress with language manifested itself into a grumpy wife who got mad at her husband for biting his nails. Looking back at it now, he’s probably just as anxious about this entire experience as I am. The only difference: I turn outward. He turns inward. In other words, my anxiety is “dumped” onto those closest to me. I become a bitch and he becomes more quiet.

Since our initial visit with Dr. K in Orlando last December, we’ve had 4 follow-up interactions. January. March. June. September. Each time we’ve talked, there have been adjustments made to Jacob’s supplementation schedule. When we started biomedical treatment for our son here is what he was taking:

  • L-Carnitine (1 mL, twice daily)
  • DMG – Dimethylglycine (1 mL, twice daily)
  • Nystatin (1 tsp, twice daily for 10 days)
  • Omega fish oil (1 tsp, twice daily)
  • antibiotic Sulfamethoxazole-Trimethoparim (5 mL, twice daily for 10 days)
  • Methyl B-12 shots with Folinic Acid (one injection every other day)
  • Vitamin C (1/8 tsp daily)
  • Vitamin D3 drops (one drop daily with food)
  • Fiber (1 tsp, twice a day)
  • Melatonin (1 mg per night as needed)

Here is what he is on currently:

  • L-Carnitine (3 mL, twice daily)
  • DMG – Dimethylglycine (2 mL, twice daily)
  • Omega fish oil (2 ml, twice daily) *changed brands
  • Methyl B-12 shots with Folinic Acid (one injection every other day) *at one point we gave the shots daily for about 90 days, but since no improvement was marked we have gone back to every other day
  • Vitamin C (1/8 tsp daily)
  • Vitamin D3 drops (one drop daily with food)
  • Fiber (1 tsp, twice a day)
  • Raw Manuka Honey – 20+UMF/830+MGO (worked our way to 4 ml, twice daily)
  • HTP-5 (one capsule mixed into bottle at nighttime) *we’ve since stopped giving Jacob Melatonin because it never helped regulate sleep and we suspect that it instead gave him night terrors
  • Nuerolink (1 capsule, twice daily)
  • Lipsomal CoQ10 (2.5 ml once daily) *started with twice daily but decreased it due to more potent brand
  • L-Theanine (100 mg 1/2 capsule, twice daily)
  • Phospholine (1 mg twice daily) *will start soon
  • L-Carnosine (1 capusle in the AM) *will start soon
  • Zinc mini minerals (3 tsp daily) *will start soon
  • Selenium mini minerals (2 tsp daily) *will start soon

In addition to the supplementation regimen, we are seriously considering Hyperbaric Oxygen Treatment therapy, otherwise known as HBOT. We’ve been given doctor’s orders to start, if we wish, with 40 60-minute sessions. HBOT is not covered by insurance, so trying to figure this out logistically and financially is something we have yet to determine.

I know I sound like a broken record, but despite my lack of patience in waiting I remain hopeful for what Jacob’s future will look like. He is back in ABA therapy because of being added to the school district insurance that is offered to me. We are in the process of also trying to find new in-network speech and occupational therapies because of said new insurance. We are looking forward to an evaluation by Carrollton-Farmers Branch ISD in October and if we decide to take advantage of public school services, he will be transferred to the Early Childhood School in Frisco ISD. We completed a 6-week study through Baylor University last month where we were trained on how to best replicate ABA at home. We are still receiving speech services through ECI in our home on a weekly basis.

At the recommendation of our current speech provider, we listened to a podcast on our drive to Arkansas last weekend. “Teach Me To Talk” is a podcast given by pediatric speech-language pathologist Laura Mize, M.S., CCC-SLP. We listened to episode #385 where she discussed the developmental milestones needed before children begin to talk. The “11 Skills Toddlers Need to Master Before Words Emerge” was an interesting perspective on all the skills needed before language can happen. We exchanged few words while listening to her thick southern accent. Sometimes I wondered if she looked like Dolly Parton.

I heard Laura say lots of things on our drive, but what I remember most was: wait. It takes time for language to happen, so be patient.

I’m waiting for fall to arrive. I’m waiting for Bianka to come back home for Fall Break. I’m waiting for Lucas to start asking for a new i-Pad because he realizes Christmas is around the corner (my answer will be no). I’m waiting for Juan to stop talking to me about all things Fantasy Football. I’m waiting for life to slow down a bit. But more than anything, we’re waiting and working diligently to help our youngest become functionally verbal. When the words arrive, this momma will be in heaven.

Signed with Love, Kat.

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