Well friends, it's been a while since I've been able to update Abe's page! We have been crazy busy as usual with all the things Abram needs and I feel a bit guilty for not posting and celebrating all the big things (and scary things!) that have gone on and will be coming up this spring!
We just got back from yet another trip to Mayo Clinic in Rochester, MN. This appointment was basically a follow-up from last year when Abram had an abnormal sleep study and it was recommended then that we do a surgery to remove his tonsils and adenoids. My husband and I at that time decided to put it off for a year in hopes that feeding therapy would enable Abram to eat the required foods for the surgery but here we are a full year later and he still won't even touch soft, cold or squishy foods.
This Sleep Study came back showing that he wakes up 13 times an hour due to obstructive sleep apnea. His last MRI showed that his adenoids were quite large and we've known since birth that his air passageway is narrow so his Sleep Medicine Neurologist and the ENT at Mayo agreed that removing his tonsils and adenoids *might* help improve sleep for Abram. With his Neurological issues, this surgery is daunting for our family but we realize that Abram getting healthy sleep is vital to his dailing functioning so his dad and I are hopeful that we are making the right choice in going through with this surgery.
For typically developing children, this type of surgery is hard but is usually an outpatient surgery and the kiddos are allowed to go home the same day. For Abram, the surgery is of course a big deal for so many reasons including the fact that he has stopped breathing while under anesthesia before so he'll have to have a machine breathe for him while he is under anesthesia, with his neurological issues things can go wrong and I was worned that many of these kiddos "regress" after the surgery, his risk of bleeding is extremely high so not only will he be in the PICU after the surgery, our family is required (Yes, REQUIRED) to stay in Minnesota for 14 days to make sure that he doesn't bleed and so that we can be close to the Mayo ER incase something goes wrong - which is an expense my family wasn't expecting and a bit of an issue since my husband has minimal vacation days left and we've only got one car! We'll have to figure out the car situation later but the good news is - lots of people rent out their homes on Air BNB and we've found a nice house for 1/2 the price of a hotel so we'll be able to have our family stay with us to help us for a few days and we'll have a kitchen so we can cook!
Luckily, the surgery isn't scheduled until March so we've got time to figure out the car situation and just how my husband will get to MN and back while we have to stay there! That gives us time to work more on getting him to eat a few soft/squishy foods (we just re-started feeding therapy with a new therapist he enjoys) and hopefully all goes well! It was an unexpected bump in the road but I'm sure hopeful that it will only help and not harm him. Surgery in general makes me nervous but breathing is super important.... so... the tonsils and adenoids have gotta go!
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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