Mason's ramp by Gramps :)

This past week we were incredibly blessed by both sets of Mason's grandparents! "Papa" (Brian's dad) met Brian with his car full of his tools and big saws to be used on a very special project. Then Mason's "Gramps" (my dad) used Papa's tools to build a very snazzy wheelchair accessible ramp in our garage, complete with a spring-hinge gate and step for the rest of us:)

It turned out great and has already been used several times - we love that Mason can be loaded into the van so easily without exposing him to weather and with much less heavy lifting required!! I can also take Mason out for a walk easy as that, anytime (if the weather will just warm up soon!!) He will LOVE that (and so will I)!!

We are so grateful to God for such awesome grandpas :)
Our hearts thank you so much, and so do our backs!!! :D

"Every good and perfect gift is from above." 

James 1:17

Hip surgery decision update

Many of you have been praying with us about Mason's hips and what to do about the surgery decision. Thank you for those prayers, and please keep them coming :) Here is an update about what is going on so far.

We actually had hip surgery scheduled for late February with a dr who said he does the surgery without using the full spica cast (just immobilizers instead).

However, in January, when Mason had his 4th set of ear tubes placed, and a dental cleaning under sedation, he had a major reaction to the intubation which caused him to have difficulty breathing (post-ventilation stridor - edema/inflammation/swelling of his airway) for 2-3 days afterward. This was very scary and because his eyelids were also swollen and he had skin blotches we don't know if it was an allergic reaction or mechanical reaction to the vent alone; it happened despite all kinds of preventive measures (steroids, anti-inflammatories, etc). And that surgery was about as minor as it gets...less than an hour under sedation w/ very minimal pain. The proposed hip surgery was going to take many hours, and the post op pain predicted to be off the charts even with strong meds (the dr would be sawing both legs in two and nailing them back together in many places).

Then, the day we were originally supposed to meet with surgeon for the pre-op hip consult, Mason was having his first day of recovery from one of the worst stomach bugs he's ever had. He was so sick from a Monday to Sunday that we literally feared for his life on several occasions - due to difficulty keeping him hydrated (and IVs when he is dehydrated are so impossible and stressful that we feared in his extremely weak state he would have a bad outcome from the trauma). God's grace in every way brought him through this!! We have lost a few years of our lives (like the machine that sucks it away in Princess Bride lol!) but although he lost a few pounds he's back up so well now that we actually were told by the dietician to back off 50 mls of his formula (even though he's already calorie restricted!?). Still, we could not in good conscience allow him to go through such a huge surgery especially after all he'd already been through in Jan. and Feb. The benefits to risks just do not seem worth it.

Besides all that, we found out that only about 50% of those w/ neurological conditions and hip displacement have pain from it (the other half don't have any pain from it). And we found out that the younger the child is when he is operated on, IF he also cannot walk, the higher the chance he'll need the surgery again: "Those with the greatest burden of disease require earlier surgery and suffer from the higher revision rates (need for repeat surgery)."   Besides that, it wasn't really going to help him in any functional way, as surgery in kids who can't walk has been shown "unlikely to maintain or restore mobility. Furthermore, it carries a significant risk (63.6%) of complications." 

Several moms of kids who did this surgery said their child was not in pain before the surgery but was afterward, and they regretted it,  or some skipped it without regret. Mason's rehab dr, after discussing this with her, said that if he is not in pain now, we can watch and wait; surgeries after hips dislocate have a low chance of success but there are new management strategies on the horizon to help with pain if hip surgery is never an option for him (ie, Botox, nerve blocks, etc).

So, we are going to wait and pray. Pray that Mason's hip socket continues to develop and that he does not ever need the surgery due to pain or full dislocation. We are incorporating everything we know how to do to slow the dislocation process down. For example:

1. 24/7 POSTURAL CARE!! Nobody has ever told us that sleep position can cause hips to dislocate faster (along with other horrible effects like constipation, scoliosis, body asymmetry, digestion issues and more) but we have been researching like mad and discovered ways to help stop and prevent further issues through positioning. Mason has been a side sleeper since birth, and simply supporting him at night with pillows in proper alignment can supposedly help arrest hip dislocation. So, we have been using a knee pillow and having him hug a cylindrical toy until we are able to transition him to sleeping on his back with supported hips (the preferred position, but we don't know if he can breathe well enough with reflux issues in this position). During the day, proper support in his wheelchair or other seating systems will help protect his body shape. The need for postural care especially at night is only recently being warned about in USA but it is well documented in Europe.

2. Standing as long as tolerated each day in a stander (For Mason that's 30 min to an hr - usually about 45 min). He has new DAFOs (hinged kind) that have a special joint with a style made just for him that the orthotics lab has never made before, bends at the ankle and has plantar stop to help his tone in his feet (he tends to point toes like a ballerina). He feels very strong in these, is hyperextending knees less and is standing with less support! The more he will stand, the better his hips have a chance to continue to develop good sockets.

3. Using an ergonomic backpack (A Tula toddler carrier) to help his legs stay in good "frog" position to form sockets); we also carry him in this position when not in the backpack for transitions room to room if not in his wheelchair.

4. Firefly Upsee. We were given one of these incredible systems through a grant, and after reading this miraculous hip story about Daniel we are determined to use it as often as possible (even though it dislocates MY hips to use it with him lol--he is a heavy guy!) When he outgrows this we are very interested in a new product (not yet available in USA) called InnoWalk (like a stander mixed with an elliptical trainer) that would allow Mason to "walk" supported (and continue to develop hip sockets) even if he cannot ever walk on his own.

5. KidWalk gait trainer. Mason has been using this a couple years now and just recently learned how to make it go forward as well as backwards :)

Who knows if any of this will make a difference or if he will end up getting surgery eventually? But we want to do everything we can to try to keep him comfortable, and pray that God will bless us again with His grace to keep Mason's hips painless and developing well. We feel that God made it clear that at least for now this is not the time to proceed with surgery.

Exploring AAC

 

 Last year Mason had an evaluation with an AAC team (Augmentative and Alternative Communication) at our local children's hospital. They recommended we try auditory scanning with Mason, since we have always felt that he seems to hear better than he sees.

Auditory scanning involves listening to choices on an AAC device (iPad, in Mason's case) and waiting until the preferred choice is spoken aloud to hit a switch and choose that item. We've been working with the speech therapist provided by our local school district to try out some of this equipment with him (borrowing equipment from the state assistive tech library).

Before we tried scanning we wanted to be sure Mason understands cause and effect - that he knows hitting a switch helps him control a choice or action. We know he does because he uses his switch to activate a series of rewarding video clips in a simple, free app called "Sensory Room."

He also shows us while watching TV that he knows when to activate the switch (notice how, in the clip below, he is watching his favorite YouTube playlist on TV; when he knows a video is coming on he doesn't like (and he knows them by heart; he particularly doesn't like the song "Do You See an O" so in advance he usually fusses very aggressively to let me know he wants me to skip that one; but now that he has some AAC tools, he isn't fussing; he instead asks me very intentionally for help to skip it by clicking the head switch on his right :)

So, now that we know he understands use of the switch, one of the most basic apps we're using to teach auditory scanning is called Racing Cars  by InclusiveTLC. Mason loves it, and he understands that he needs to hit the switch to activate it; the next step is trickier as the voice will then say "nothing here" and keep saying "nothing here" until it gets to the box showing a car; then it says "a racing car;" Mason, upon hearing "a racing car" must hit his switch to choose it and make it race around the track.

The problem we are having is knowing whether Mason hears well enough to distinguish "nothing here" from "a racing car" when they are spoken in sequence. This is key for him to properly use the technology; we know he hears sound because he giggles but he giggles when either phrase is spoken. We are looking into the possibility that an FM system may help him hear more clearly to distinguish these phrases in a meaningful way. (Many people who do not hear well, even though sound may be amplified by hearing aids, explain that that hearing sound does not necessarily mean understanding the sound, especially on a TV, radio or other device). Mason knows he has to hit his switch again to make the car race, but he has trouble knowing when he should hit it this second time. Pray with us that audiology will be able to help us if know if distinguishing sound is an issue for him, and if so, some possible ways to overcome this.

For now, we are using the app GoTalkNow to make him some basic communication boards. But he'll need to show he can do auditory scanning before they are very functional for him. In the meantime, we're going to have him practice using screen mirroring on our TV (using a digital AV HDMI cord by Apple - where he can play his apps on the iPad but they display on the TV instead, and his switch still works with it). That way the display is much bigger so he can also hopefully see the images better. We are excited that so many options exist for helping kids with dual sensory losses make the most of their existing abilities to communicate with the world around them :) We'll update later with how it's going on the AAC front ...