For years, we have struggled to keep Abram safe while he sleeps. He's been a head banger since he was old enough to get on all fours and it wasn't until a year ago that I figured out that I could at least wrap his crib slats in pool noodles to keep him safe. He would slam his head so badly into the slats that he'd get huge lumps, bruises and rub his forehead raw and bloody on the wood.
We had originally started the application process for the "Safety Sleeper" over a year ago and unfortunately it did not work out well for our son. It took over 6 months to get the bed tent and we unfortunately found out quickly that although it would have been great for travel - it was not good as a permanent bed because his epilepsy monitoring camera could not see in and the roof of the tent was so low that Abram could not bounce to self soothe without smacking his head. Bouncing is a huge part of his nightly ritual and his only way to self-sooth so we regrettably had to send it back.
We looked into other medical beds but found the Courtney Bed to be the best fit. We liked that it had an open top (for video monitoring), that it is 7' high so Abe couldn't crawl out and that the corners of the frame were fully padded for optimal protection against head banging. We also impressed that it was fully enclosed so that he could not elope in the night and it included a durable medical equipment mattress. The Courtney Bed was exactly what we needed AND they are custom made to each child so we were able to have the bed made to match our home!
I am extremely impressed with the quality of this bed. It is FDA Approved and considered a Class 1 Hospital Bed. Both of those facts are extremely important when dealing with insurance providers to cover a bed medically necessary to create a safe sleeping space for a child with health concerns like our son! Our Occupational Therapist and Pediatrician both had to write letters of medical necessity to prove exactly why we needed it, which was the easy part!
We worked with National Seating and Mobility to get it approved/covered by our insurance and with a great surprise, we found out that the Wheelchair Professionals (a third party affiliate of my husbands insurance) covered it 100%. I even called the Manager of National Seating and Mobility to make sure that there wasn't some sort of mistake and she confirmed that our son's bed was 100% covered. I told her that I felt like I had won a prize and that trumpets should be sounding and she was kind enough to indulge me by making fake "trumpet" sounds through the phone for my satisfaction.
Anyhow, this bed is amazing, it is hand-crafted and made-to-order. It will last Abram a good long while and we are SO HAPPY that he will finally be able to get out of his crib (at FOUR) and into an appropriate sized bed for a growing little boy.
Many thanks to National Seating and Mobility and the Wheelchair Professionals for making this dream come true for our family. Having our son have a SAFE place to sleep is of utmost importance and we are beyond thankful.
Very special THANK YOU to Patrick Cyr of Courtney Beds for crafting something SO BEAUTIFUL that looks like a phenomenal piece of furniture while also not looking like a "hospital bed". We are in LOVE. The special black wood and charcoal panels match our home wonderfully. Thank you.
Last week, we traveled back to the Mayo Clinic in Rochester, MN to check on Abram's pineal cyst to once again rule out neurosurgical intervention.
Abram was put down for a sedated and intubated MRI early on Wednesday morning and the procedure took about 2 hours. It is always extremely nerve wracking putting a child with underlying neurological issues under anesthesia. I hate it, actually and the worry is nearly consuming while my son is out of my view. However, Mayo takes care of things so expertly that they are like a well oiled machine. Before he is put out, I get to hold him in my arms as he's put down with gas so he doesn't have to suffer through the multiple pokes to get an IV started to get the actual anesthesia. The team there is always welcoming, answer my questions and easily put our fears at ease.
Last time, he had a hard time waking up from the anesthesia so this time, we opted to NOT give him any of his cannabis oil before the procedure. He seemed to be less groggy but he woke up angry and had a huge fat lip from where the breathing tube must have rested and pinched on his face. It's five days later now and it's finally gone down a bit and just has a canker on the inside but it was a good price to pay knowing what we know.
Unlike our experience at home where you have to wait WEEKS to get answers from your MRI - Mayo Clinic tells you the results of your scan within a few hours. As soon as Abram woke up, we got him lunch and went back to the Hotel to relax before we had our follow-up with Sleep Medicine. The Neurologist who heads the Sleep Medicine program there is so nice and even comes out to get his patients himself - which I find both impressive and humbling. Last year he suggested we get Abram's tonsils and adenoids removed due to obstructive sleep apnea but with his eating issues, we postponed the surgery because we didn't want to have further complications due to him not eating or being unable to eat the cool/soft/squishy foods required. We were also concerned on how accurate the results of a sleep study could be when he barely slept at all.
Our Sleep Medicine Neuro was very good at explaining that they don't need to see "perfect" sleep at a sleep study and that just a couple hours would suffice. After I showed him some videos of how Abram sleeps - he explained to us that the reason he sleeps in the positions that he does is because he's protecting his airway and that when he wakes up screaming the way that he does - is because he is having a "confusion arousal" where his Oxygen has dipped below where it should have. So, he told us that we'd need to come back in November (after Abram is done with his Neuro-Intensive Therapy) to have another sleep study and to meet with the ENT Surgeon again. He explained that even if we could improve his sleep by 40% - that it would help him immensely with learning, neurological development and everything else. We were told that they don't do outpatient surgery like this for kids like Abe with underlying Neurological conditions, so he would be put into the ICU for observation and we would be asked to stay in a hotel near the Hospital for a few days incase of an emergency. The last thing I want to do is come home and have an issue that required help and be stuck worrying if he'd get proper care and/or needing an ambulance transfer to Mayo.
In addition, our Sleep Medicine Neuro was a little shocked to meet a child with UBE2A. He told us he'd been a Neurologist for 38 years and that Abe was the FIRST KID he's ever met with this condition. Ironically, he had literally just been researching UBE3A (Angelman Syndrome) the night before not having any idea he'd meet a boy with UBE2A the very next day. He seemed quite impressed and interested in learning about it and told me it was "quite nice" that I dedicated a page of this website to help other parents newly diagnosed with UBE2A to find much needed information and someone to connect with.
Luckily, he told us the pineal cyst was 'stable' before we left because when we met with the Neurosurgeon, about 4 other doctors came in with him and I think I would have panicked if I hadn't known that all was well before seeing that many faces coming to see my son's brain scans. Our Neurosurgeon told us that Abram's pineal cyst is "stable" and that we don't need to keep scanning it unless something major occurs like extreme headaches with nausea and vomiting or issues with his eyes and being unable to look up. I was relieved to hear we wouldn't have to continue to put Abram through these scans so often. He did share that it could cause issues for him later in life. It may need to have surgical intervention at some point but it *could* just stay the way it is for the rest of his life and not cause him any more issues. I'm just glad to have an end to the brain scans for now so we can focus on everything else. What a relief!!!
Before we left, we met with our "coordinating pediatrician" who kind of sits and talks with you forever about the things that you find most concerning currently and how Mayo can assist you in the areas that you need. We talked at length about the differences we've seen since we started using cannabis oil and our hopes to wean him fully from the nasty benzo, Clonazepam. She agreed fully that getting off that drug would help him immensely and thought it was a great idea to be solely on cannabis oil ONLY. She asked who we followed up for with Neurology and I explained that since Iowa's law requires us to have an Iowa Neurologist to keep us "legal" in Iowa with his medicine - we were unable to keep a relationship with Neurology/Epileptology there. She shared how difficult these laws make it for physicians to be able to help because in MN only MN residents can be helped with their cannabis law as well. (Despite the fact that our Law Makers in Iowa somehow think they can send us there for help.)
So, it seems that when we go back in November we will see Sleep Medicine, ENT, a Developmental Pediatrician, a Dietician, Speech and a few other areas I cannot recall. We will be busy again rolling into the Holiday Season but I am so thankful that that cyst has decided to stay put, to not grow and that neurosurgical intervention is NOT needed at this time.
Life is good. Our family has much to be thankful for. Although Abe's "normal" still includes endless therapies and doctors appointments with specialists and sub-specialists - I know we are beyond LUCKY to have answers and to be able to cross invasive brain surgery off of our list for now.
Representative Patti Ruff was the first Representative who took Abe and I onto the floor of the Iowa House of Representatives at the Capitol to meet him and hear his story. She also asked other Reps to come say Hello and introduced us to several other people who understood why a comprehensive medical cannabis program was so important to Iowans.
She wasn't even MY Representative but it turned out that she is my Dad and his wife Dorie's Representative in NE Iowa and they are showing their support for her re-election this year.
Kindness matters! Listening to your constituents (and ALL Iowans regardless of their zip-code) is important. Making a mom with an overwhelmed toddler on FFA day at the Capitol feel heard was priceless. Thank you, Patti! You are what Representation at the Capitol is supposed to be.
Hello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis.
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