Special Delivery: Sleep Safer Bed for a BIG boy!

Today was a very special day at our house! A much-needed piece of equipment arrived...a "SleepSafer Bed" for Mason! The main reason we needed a change is that Mason has slept in a standard crib until now but he is getting too heavy to safely lift over the rails to get him in and out. This new bed solves that problem by offering safety rails that drop down allowing us to wheel him right up to his bed and lay him down...much less lifting involved!!

The reason we couldn't just transition him to a toddler bed or regular bed with rails is that he needs high rails. The safety rails on standard twins are too short (first we tried him in a bunk bed with a safety rail all around it, placed on the floor instead of on top, but when Mason sits up he can flip right over those short rails. He often arches when excited or upset, and he also likes to try to roll over whatever is behind him, which is dangerous. He isn't tall enough to roll over the rails on his new bed...right now, we have just the bottom rail installed because it is high enough to protect him at his current height, since he is not yet able to get upright beyond sitting.

But when he gets taller or can pull up to stand, a second provided rail can be added above it. It looks generally like this with the other rail attached...

His new bed has padding all around, which allows him to be safe no matter how much arching or thrashing around he does, or if he has seizures. It has an IV pole built in to hold his formula pump, and an access window in the headboard to allow for his tubing for overnight feeds. There are two cranks that allow the mattress to articulate so we can raise the head of his bed easily to help prevent reflux, or elevate his feet if he needs it. It is also a twin size so it has a LOT more room than he had before to move around!

I think he really likes it!!

 

He had his first nap in it today and was asleep in under 5 minutes, snug as a little bug!

Best of all, we did not have to pay for this amazing bed! Insurance picked up most of the tab, and Variety the Children's Charity took care of the copay. We do not know what we would do without the generosity of this wonderful organization so if you ever need ideas of great non-profits to support, we highly recommend Variety and we thank God for putting them in our lives!! They have helped significantly in providing Mason's most crucial pieces of equipment! :)

"In peace I will lie down and sleep, for you alone, Lord,

make me dwell in safety." Ps. 4:8

EEG Results

Well, the answer is clear on Mason's EEG. It came back abnormal :( It doesn't mean he is having seizures again, but it does mean that it still isn't normal. So, for now we stick with the Trileptal.

In other news, he also got a new pair of specs. They don't look much different than his previous pair but we think he is still as cute as ever! :) Enjoy!

Neuro & Immunology Update

It's been since June 2012 since Mason has had any seizures (at least that we've known about). Almost 2 years seizure free is something we can only fall on our knees and thank God for. It has been so wonderful to have this reprieve!! Friday was a follow-up EEG for his neurologist. If it comes back normal we are to start weaning his seizure med, Trileptal, beginning in June (it's a very slow process).

They told us to expect results around Wednesday of this week. We ask for prayers for 1) a normal EEG and 2) guidance on whether or not to go off the Trileptal.

With his previous seizure med, it was a no-brainer to wean (he was on Keppra and had worse seizures every time they would bump it up so we couldn't wait to be done with it). But as he's been seizure free on Trileptal with no obvious side effects, we aren't sure if it's the med itself preventing the seizures or the simple lack of Keppra and other inciting factors like UTIs, etc.

We definitely would love to be done with seizure meds (it, along with his Prilosec/reflux meds) are causing osteopenia (low bone density) yet we would happily keep it up if that's what is preventing the seizures. It's very hard to know which way to go...so thank you for praying that the answer would be obvious for us and that he would have no ill effects if we end up weaning.

We also request prayer for both the boys' immune systems as their labs this time around show worse levels for IGG/IGM and strep antibody than in the past (which were already abnormally low). We had hoped nearing summertime they would be improving but that is not the case. Micah has had to increase his daily antibiotic and Mason may have to bump up to two infusion sites (he usually gets one in the leg for an hour each week but the doctor says soon he'll need to go to one in the leg and one in the stomach). We don't look forward to this either. Also pray that Micah can stay healthy enough so as not to require infusions himself.

For this God is our God for ever and ever; he will be our guide even to the end. Ps. 48:14

S Is for Spring...and SMILES :)

Google Syndrome

The day Mason was born, our first google search was “CHARGE Syndrome”. And so it began...the long pursuit of finding out more about Mason, with the goal of finding ways to help him however we could. Search query after search query, we press on. If we should ever reach the end of the internet, we’ll begin again. What are we doing, exactly? You know, the usual: * Poring over MRI images of people’s brains and comparing them to Mason’s MRIs. * Reading medical abstracts and looking up terms that we didn’t know existed. * Learning about syndrome after syndrome, trying to find ways that kids with medical conditions similar to Mason have been helped. * Looking up genes, by name, and finding out what they do, what other genes they interact with, and how they are inherited. A child without a diagnosis is enough to turn this computer guy and his writer wife into full scale medical researchers. If we were examined by doctors they would note some "dysmorphology" in us -- the droopy, bloods-shot eyes with dark circles underneath, the numb fingers from typing well into the night, the sore heads from beating them against the wall: yep, that's right; Google syndrome.

We love our undiagnosed little man. If we never have a diagnosis for Mason, nothing changes. We love our son and he is a blessing to our lives. We want to be a blessing to him too - by praying for him, caring for him, interacting with him, advocating for him, helping him progress, and doing what we can to find ideas to bring him better health and comfort. We don't feel that God determined Mason's birth to be in the information age for no reason; He knew it would be brought to bear /used for benefit in his life. If God chooses and eventually we end up with a diagnosis, our prayer is that whatever the diagnosis is, we’ll be able to find ways to help him live a healthier and happier life to bring glory to His Creator even in greater ways than he already does. And if we never know, our prayer is the same.  

--Mason's Dad