HKAFOs and trying new equipment out - with a Video!

A couple weeks ago Mason got new HKAFOs (standing braces) and he has been enjoying them. The fit pretty well and his skin is generally tolerating the braces.

Mason's new glasses are in - with no bifocals! The eye surgery he had in spring has healed up and did improve his eyesight some, so now he just needs glasses, not bifocals. He went back to orange for the frames.

We are still dealing with crazy eczema that won't heal. The doctor has Mason trying a course of antibiotics and antibiotic cream to see if there is some underlying infection but his course of that has pretty much finished with no real improvement. I think the next step may be a steroid injection, but I'm not sure.

Yesterday Mason and I got to go work with one of the Myelo Clinic physical therapists at the hospital to try out new equipment. We have been waiting months on an opening for physical therapy (PT) and are still waiting. We decided that if we could figure out what equipment Mason needs then we can pursue private therapy locally instead of waiting for Children's Hospital. They were talking about everything from a gait trainer (very supportive, lots of potential attachments, but also thousands of dollars) to a reverse walker (minimal support, potentially much less expensive). They anticipated several appointments trying equipment to see what Mason would need and would be willing to use.

Well, I'll let the video show you the result.



Yes, that is his first attempt with a walker. He did great and it was obvious that he doesn't need a gait trainer. He liked walking. It's a great cardio workout for Mason, works his arms, shoulders, core, and applies pressure to his leg bones to help strengthen them and combat the osteoporisis, all important. Now we pursue insurance approval for a walker, which can be a long process. We have a family about an hour away who has a similar walker available for Mason, so we'll pick it up this weekend and use it while we wait for insurance to approve a walker for Mason and for the order process to happen. Then we'll pass the one we're borrowing on to another family who needs it.

We are also working to get Mason into PT locally with the physical therapist he's worked with in the past.

A Growing Boy

It has been several months since I've shared any updates here. Mostly that is because we've had a lovely summer and I have not been able to bring myself to sit and write boring updates. I love that life right now in medical land is pretty boring! We have been outside, gone to a Celtic festival, been swimming, visited the Columbus Ohio Temple grounds, had campfires, enjoyed the Renaissance festival, and just had a relaxed, family oriented summer.

Mason is learning and growing like a typical four year old (4 years 8 mos). He's opinionated, determined, and still shy around unfamiliar people. He loves to use his hands in things like playdoh and thinking putty. He sword fights with his brothers.

He bosses people around and does chores and laughs at jokes. He likes playing Minecraft. He loves to hold his sister's reptiles. This one is Mufasa, a bearded dragon.

He had Myelo clinic this summer and saw all his specialists. One giant good news we got was that his scoliosis has improved. The orthopedic surgeon was surprised but pleased. His curve is now only 13 degrees, very minor. As a matter of fact they would not prescribe bracing for someone who was presenting with a 13 degree curve. However, as Mason already has a brace we have the option of using it. Mason's skin is very sensitive and we've struggled to use the brace without rashes, eczema, and breakdown, but we're trying using it when his skin can handle it, and we're doing lots of play based physical therapy at home to keep building and strengthening the muscles in his core and back. Right now Mason has been dealing with a bout of eczema that even medicated creams are not healing completely.

He's waiting for an opening for PT to try out using a walker. It's just going to be another option during his standing time each day, it would not be practical for him outside the house for several reasons. For one, he can't actually use his hands to do anything (play!)when holding on to a walker. For another, he can't bend over to pick up anything because of the bracing he has to use. This week Mason will get new HKAFOs (standing braces) because he outgrew the old ones. I'm slightly nervous because we made some changes but we think he's ready for less support at the hips, so he's moving from a plastic back piece and belt to a leather belted area. We'll see how it goes.

Today Mason got new glasses. These are the first pair he's had since his double eye surgery several months ago. Now that the healing is officially over his vision has improved. He does still have double vision without glasses as his eyes turn in, but glasses can correct that turn now - without bifocals. This is a large improvement because before his glasses could no longer compensate even with a strong prescription and bifocals.

He also had a urodynamics test (bladder pressure test) today. It was the first one since his medication dose change months ago. He passed with flying colors and the increased dose of medication has improved his bladder pressure. Basically, that means his bladder is paralyzed well enough that it can hold a normal amount of urine without spasms. Spasms are bad because they thicken the bladder wall and can cause reflux into his kidneys, damaging them.

Five years ago when we first learned of Mason's diagnosis before birth I couldn't picture what his life would be like. I just had no idea. While he has had more than his share of surgeries already (18), comes with a few daily medical requirements, and has more than the usual number of appointments, on the whole he is a typical little boy. It's a joy to be his mother!

Bye Bye Cast and other Updates

Yesterday Mason got his cast off!  Hip, hip, hooray!  It was a long 6 weeks. Mason's leg and foot are still dealing with swelling.  It is understandable when you realize just how much was cut in his leg.

The surgery was really deep and he was cut pretty much from one side of the ankle bone around the back of the leg (down to the bone) to the other side of the ankle bone.

He is healing well but has a ways to go.

He did come home with some temporary equipment.  For the next 4 weeks Mason will wear this walking brace to keep his foot in the proper position while swelling continues to go down. Hopefully in 4 weeks swelling will be gone and we can have new AFOs made. 

The perks to this temporary brace: velcro! We can take the brace off for baths, for playing in mud, etc. The goal is to wear it more in 24 hours each day than he has it off. He is also freed to crawl around because if the brace snags on something and his leg slips out of position we can simply unfasten the velcro and adjust it, unlike a cast.  Mason has taken advantage of that to play on the floor more.

He loved his bath yesterday and I suspect he's going to ask for a bath every single day for a while. 

One thing we were not sure about was how much strength Mason would lose from not being allowed to crawl or climb for 6 weeks.  The last time he had casts long term like this he was unable to climb up into his wheelchair or climb the stairs when the casts came off.  This time around he's done much better.  He has already shown us he can climb into and out of his wheelchair from the floor on his own.  He hasn't attempted climbing the full flight of steps yet, but as the steps are easier (shorter height for each step) we believe he will still be able to do that. 

In other areas:  The orthopedic surgeon took an x-ray of Mason in the sleeping brace and it is correcting his curve to the degree they wanted so we don't need any more adjustments on that.  He has quickly gotten used to sleeping in it. 

Physical therapy is still happening weekly and going well.  He is gaining strength in his trunk control but it looks like he may be reaching the limits of what he will gain.  And that won't put him at the balance level we were hoping for, so many tasks involving seated balance (putting on and taking off clothes/jackets, drinking from a cup without chair arms and back to hold him up) are still going to be very challenging.  We'll keep brainstorming and working to find ways to make him successful.  I suspect occupational therapy is in his future for this. 
We are thankful for the healing so far from surgery. On to the next 4 weeks!

One Surgery Down, More Next Week

When I last wrote we were waiting to see the neurosurgeon about the possibility of a tethered spinal cord for Mason.  That appointment went well, the surgeons involved in Mason's care had a consultation and decided they do not think his variety of symptoms was related to needs his spinal cord detethered at this time.  That meant a week and a half ago Mason went ahead with surgery to release the tendon in his right heel (instead of putting that surgery off). 

Surgery day ended up being a bit stressful.  Mason was laid back until we went to the operating room.  Then he was a bit nervous so he and I went around the operating room exploring.  Once we did that he settled and I sat him up on the table.  The anesthesiologist handed Mason the mask to explore that would help him fall asleep.  Then Mason decided to hold his own mask to fall asleep.  Usually the anesthesiologist holds it over your nose and mouth and holds the back of your head too so you don't move away from it (for kids).  Nope, Mason just held it while I held him, and to sleep he went.  The anesthesiologist was shocked. 

After surgery we actually got admitted to the hospital because his foot wasn't tolerating the cast so they wanted to observe him for a few hours.  We were supposed to be outpatient.  They ended up bivalving the cast (cutting it) and we did get to go home late that evening. 

Since then things have gone well.  Over the first weekend we had to keep Mason mostly laying down with his cast elevated.  Yeah, not so easy when he came home with ZERO painkillers because he doesn't feel any pain in his feet and legs.  He can't tell he just had surgery, they cut clear to the bone, and other than seeing there is a cast on his leg he feels normal.  After the first three days Mason was allowed to begin sitting up and using his wheelchair.  He is still not allowed to crawl around or climb, so we're doing a good bit of keeping him busy.

He'll have a checkup on Wednesday.  As far as we know the plan is to keep this cast on for 6 weeks from the surgery. 

Next Monday Mason has a double eye surgery.  They will cut and reattach one muscle on each eye to a new position to help with the eye crossing he's dealing with.  Recovery for that is supposed to be pretty easy, eye drops for a week and that's it. 

Right after the eye surgery, while Mason is still under anesthesia, the doctors will do a full spinal MRI.  We're getting a good picture of the spine and spinal cord so we can compare images in the future when he has new symptoms of a tethered cord.

In other news Mason and I go weekly to physical therapy to work on his core strength.  He's a trooper, working really hard and cheerfully doing all we ask him to try.  Basically, each exercise is couched in play and games.  He uses toys, an exercise ball, an exercise peanut, and a tumbling mat to sit, turn, stretch, reach, twist, bend, lift, and crunch. 

We got word that Mason's back brace that he'll wear when sleeping is ready for a fitting, so that is scheduled for the Friday after eye surgery.  I'm praying that Mason tolerates wearing it and adjusts without too much trouble. 

Will we or won't we?

Yesterday Mason had the first appointment in the process of creating his night time sleeping brace for his scoliosis.  The first step is simply making a cast of his body from under the shoulders to his hips. This picture is right before they start wrapping him in a cast.  They wrapped him in cast material and while it was still flexible they pushed on his shoulder and hip to correct the curve of his spine.  He stayed in that position while the cast material hardened.  Then they cut off the cast.  It will be used to make a mold of Mason's body and to create the custom brace.  In a few weeks we'll go back for a fitting.

While we were there Mason got to see a brace like the one he'll be getting.  It looks okay but I don't know that he'll be able to sit up in it and climb out of his bed each morning when he wakes up.  I'm not even sure he'll be able to roll over in it.  We shall see.

Yesterday morning I also called our neurosurgeon's office to see what Dr. G's plan was now that the urodynamics (bladder study) was finished.  The nurse practitioner called me yesterday afternoon to chat about the symptoms we are seeing.  She promised to call me after she went over all of it with Dr. G, but that since there had been no bladder changes she wouldn't be surprised if we were done for now and would not pursue any more testing until the bladder begins to show changes.

She called me back at 9:30pm.  Dr. G wants to examine Mason before the scheduled foot surgery a week from this Friday.  His reasoning makes sense.  If the foot contracture Mason is having surgery to correct is being caused by a tethered spinal cord (instead of just randomly happening) then doing the foot surgery before doing a tethered cord release means the surgery will be wasted.  His foot will simply re-contract and need a repeat of the surgery because the underlying cause (tethered cord) had not been addressed. 

Dr. G's office will call today to schedule that exam.  There are two main possibilities that will come out of that exam.

1. He will clear Mason to go ahead and have foot surgery if he feels that Mason does not need a tethered cord surgery yet.
2. He will cancel Mason's foot surgery and schedule a sedated MRI of Mason's brain and spine instead.  This would be the final imaging done before scheduling a spinal cord detethering.  The foot surgery would get bumped to a later month after a detethering was complete. 
3. Or after cancelling the foot surgery and doing the MRI the imaging could come back and the neurosurgeon could decide to wait and we would reschedule the foot surgery - but this is the least likely.

As always, things are never certain around here.  That is probably one of the most challenging parts of having a child with complex medical needs!  It takes a team of doctors to decide what is going on and what needs treated first, second, and third, as well as how to treat each issue without impacting other issues negatively.

In other news, Mason had his first appointment with his physical therapist on Monday.  We went over the issues Mason is dealing with and our goals, gave him a good workout, and will go back weekly for the foreseeable future.

2016 isn't Going to Be Boring - Drat!

Sometimes I daydream of nice, boring years with no medical hoopla.  2016 is NOT going to be boring unfortunately.  We had Myelo clinic on Friday and saw a lot of Mason's specialists.  We ended the day with renal ultrasound (to check kidneys and bladder) and spinal x-rays (to check the curvature of Mason's spine).

Many things are going well. His shunt is working fine, he's learning fine, and from what I can tell reading the kidney/bladder ultrasound those are ok too (we will hear from the doctor this week if anything is wrong).
Several things are not ideal.

1. Mason does need surgery on his foot. Again. They are scheduling a ways out (couple of months). This surgery will be more aggressive, cutting clear to the bone on his heel tendon area. When surgery happens Mason will be in a short leg cast for 6 weeks. Hopefully this time around he won't break any bones because of it but it is possible because he still has osteoporosis.

2. Mason needs physical therapy to work on core strength. We expected this because we have been seeing some balance related issues that are keeping him from being able to learn skills like putting on and taking off a shirt or coat.  Mason can't sit and balance and do those things that involve moving his upper body around dynamically. Even drinking from a cup is difficult if he's not in a seat with a back or his wheelchair because he'll tip the cup up, lean his head back, and fall over. After a few months of PT we'll see how he is doing and consider adding in occupational therapy to help him with those fine motor tasks if he needs guidance breaking tasks down into a sequence while also keeping his balance. We'll start PT in February. I'm guessing once a week, with daily practice at home. I've also already gotten some ideas from occupational therapy to begin doing at home on our own while he gets a few months of physical therapy in.

3. Mason has his double eye surgery to do, which I mentioned in my last post. This will probably be the first surgery to happen.

4. His scoliosis is worse, which is probably contributing to the balance issues. I've not spoken with the orthopedic surgeon about this yet (who is doing his foot surgery) because we didn't get the x-ray until the end of our day of appointments. The surgeon's office should call us this week to talk about the x-rays and where we go from here. However I've read the test results and Mason went from a curvature below 10 degrees (not scoliosis) to one around 27 degrees in just 6 months. Treatments vary (bracing (probably where he would start because his curve is below 50 degrees), surgery to put rods in spine or to fuse vertebrae, or more). So possible surgery on the horizon here.

Unfortunately the scoliosis could also be a symptom of tethered spinal cord so we need to talk with neurology in conjunction with ortho.  When you look at all 3 symptoms together (right foot contracture, balance degeneration which could be nerve damage, and a quickly increasing scoliosis) it points to Mason's spinal cord being tethered again.  This is bad.  We need a doctor to order a sedated MRI to check things and we need a doctor who will listen to the whole picture, not just brush us off. One reason doctors sometimes brush you off with this issue is ALL people with Spina Bifida who had a back closure surgery have a tethered spinal cord.  Basically, the spinal cord gets stuck in the scar tissue.  So that is going to show on the MRI.  The real issue is that a neurosurgeon has to weigh the issues you are seeing physically and decide if all of them together mean the tethered spinal cord is being pulled tight and causing those issues or if the issues are unrelated. They are cautious because it is a major surgery (which we've done once before!) that risks causing more damage to Mason's nerves. We'll just have to see where this goes.

So there you have it, a perfect example of what we mean when we say Mason is medically complicated. He's precious and funny and worth every bit of the craziness. It is certainly never boring around here.

We know none of this is a surprise to God.  He knows what needs done, what is going to happen, and we're praying that He'll help us through it as we go.

Bowel Management Bootcamp Day 1

This may bore most readers but I'm going to share the process of this week long bootcamp for those who come across this blog and have a child with Spina Bifida. 

Today was what will be the simplest day because it did not involve bringing Mason.  I attended a lecture that is a general overview of how the bowel works, basic enema and medication based solutions for bowel problems, surgical interventions that are possible depending on circumstance, etc.  They also demonstrate the foley balloon enema (how it's put together, how you fill and prepare it to use with your child, etc).  That was interesting because we've not used that setup, we use a cone enema.  I'm hopeful that this will be a good option for Mason.

They talked about the variety of things that they look at and coordinate when planning a bowel program for an individual (including looking at the colon's size, function, nerves, and more).  They talked about products to mix for a solution, about fiber supplements and laxatives, and more. 

The group was generic to a degree because in the room were a variety of people there for different underlying issues.  That meant it was not as helpful to me personally, in that most of the situations they described won't apply to Mason.  He has no sensation and won't be able to eventually learn to empty his bowels on a timed routine (without an enema).  As far as we know today, he has no anatomical abnormalities that could be surgically corrected (the contrast enema tomorrow will detail that for us, but we have no reason to suspect abnormalities). We have already been doing enemas and laxatives for 2 years so we're in familiar territory. 

They opened up the room for questions and I was able to ask specifics.  You could see the confusion on some faces as the nurse demonstrated and described using the foley enema.  The nurse wasn't specific enough in some ways.  I was able to ask specific questions that clarified the process because I already knew what to ask, having enema experience.  For example, in the sample pictures (with a doll) in our binder they show a child laying on their belly and knees during the fluid going in process.  That's pretty awkward.  So I asked about alternatives like laying on their side or our current setup with sitting on the toilet during the entire process.  It turns out both options are valid, and from experience with Mason I know they are more comfortable for him as well as easier for him to play or do an activity while waiting through the process. 

One poor woman asked, shell shocked, if they would need to do an enema every single night once they head home after this week. She was under the impression that after this week their child's issue would be solved. Yes, yes you will.  Yes, it will change your family's routine.  Yes, it's overwhelming at first.  But you'll find a new normal. 

Don't get me wrong, I appreciate the nurses and doctors we'll be working with.  I know they have some experience that will hopefully help us improve what we are already doing (especially the alternative liquid mixes to put in that may stimulate Mason's colon to do some of the work to get poop out).  However, the nurse demonstrating the foley enema setup was young (early 20s is my guess) and when asked by a mom if this balloon enema is something a child can eventually learn to do on their own she was adamant that it wasn't possible.  The woman asking has an 11 year old.  If you know me in real life you know I'm not shy so I spoke up.  I told the mom that the nurse was wrong, that people CAN and do learn to use a balloon enema setup in some form to do their own enemas, because I'm part of many FB groups related to spina bifida and read their stories and chat with them.  Can a young child learn to do it?  Probably not.  But an older child, teen, or adult?  Yep.  Like anything, it would take practice and finding a setup that works for them (probably one that includes doing everything on the toilet like our setup instead of transferring from the floor). 

Sometimes I get so frustrated at how people limit others without even letting them try something new.  No, they will never learn to do something independently if you never let them try.  Sigh.  Hopefully that nurse will learn as she continues with her career that many things that seem difficult are in fact possible. 

Anyway, that was the gist of the evening.  Tomorrow Mason has a contrast enema (dye goes in, x-rays are taken to map out his colon, etc) and we meet with the doctor for a plan specific to Mason.  It should be interesting!

A Birthday and Regained Strength - Video included

How can Mason be three years old already?  We celebrated his birthday with a few presents (trains, a glowing ball, and some playdoh toys).

He also was thrilled to have Mommy make some cupcakes and chose chocolate cinnamon cupcakes with chocolate icing. 

I also wanted to share a quick video from today.

 It shows the progress he has made since losing a lot of strength last fall spending two months in casts.  He can now climb into his wheelchair completely independently. 

Wheelies, Picking up Toys, and a Video

How about some Mason updates? 
My cutie pie is growing and learning new things on his own schedule.  The newest skill is likely to give me gray hairs - wheelies. 

That's right, Mason is a little daredevil.  We've raised his anti-tip bars to accommodate his wheelie fun so he can tip further back. 

While these pictures are cute, wouldn't you like to see a video?  Mason was happy to do one this morning.  Enjoy!



I also had someone ask about if Mason can pick things up from the floor when in his wheelchair.  The answer is it depends!  If he has his tray on the wheelchair he cannot reach anything on the floor.  However when the tray is off he can lean down to grab things so long as they are not flat on the floor.  So a toy car would be easier to pick up than a piece of paper. 

 He was feeling extra cooperative this morning when I got the camera out so I got a few pictures of him picking up toys from the floor. 

Here is the first toy pickup.  It was pretty easy, a Duplo tree that is a few inches tall.

The second was a Duplo train piece, shorter to the floor and therefore harder to reach.  As you can see, he is able to reach to the floor, thank goodness for seatbelts!  He uses his wheel or armrest with the hand not holding the toy to help sit back up because his core is not quite strong enough to do it without one hand helping.  We're working on those muscles!

Mason's Getting Stronger!

 

Things for Mason have been fairly quiet since I last posted here.  He breezed through the week following the IV infusion of osteoporosis medication with mild symptoms.  At the same time I, Mason's mommy, have been dealing with my own medical emergency, which you can read more about on my regular blog here and here.  As things have settled down we have been thrilled to see Mason making a lot of progress in his physical development. 

If you remember, months ago Mason had tendon surgeries for his right hip and heel.  Two months of casts and broken bones from those casts later he was finally able to move around again, only to discover he had lost both strength and ability.  The cut tendons in his hip have affected his ability to move that hip/leg.  The lost strength in combination meant my sweet boy could no longer climb up steps, transfer into and out of his wheelchair, or do anything using similar muscle work.  We have done weekly physical therapy with a new PT and developed some exercise play routines here at home with the therapist.  Mason's hard work is paying off! 

 

Here he is, climbing our flight of 13 steps so he can go play upstairs in the bedrooms.  Without help (other than a spotter to make sure he doesn't slip and fall).  He's so proud of his ability.  He loves the freedom to go play upstairs without being carried there, especially right now as the large tub of Legos have been brought out of the attic.

Unfortunately for this momma heart he has also decided he can climb DOWN that flight of 13 steps, so I regularly hear him calling, "I come down.  Legs, mom.  Legs first."  Then I rush over to find him backing up on his belly to go down legs first.  He's getting better at it.  At this point he needs someone with him for every step down because if he gets distracted he starts moving too fast and his bottom moves faster than his legs and then he falls backward.  Where we catch him.

I know in my head this growing independence is a good thing.  I cheer him on.  He's learning to do things we want him to do.  I just wish he were in a padded suit while attempting them! 

More Questions: Therapy and Educational Options

 

Time for another reader question to raise awareness for Spina Bifida! 

"What are your plans for school?  Will the school district help with Mason's therapies and equipment?"

This is something we've been talking about recently.  Mason receives his physical therapy through the Help Me Grow program right now.  Once a month they come to our home, show us what to work with Mason on, and answer our questions.  Then they leave us to do the day to day work ourselves.  When he turns 3 in January he will no longer be eligible for the program. 

We've had our very first discussions with Help Me Grow about transitioning Mason out of their program and more discussions are on the horizon.  They were shocked that we would not consider sending Mason to preschool so we could take advantage of free physical therapy and get him started on academics.  To be honest, this did not surprise me.  In our area it is unusual for any child not to attend preschool, but more so if your child could be doing speech, physical, or occupational therapy.  The entire Help Me Grow program is structured to make a seamless transition for the child from their program into the public school preschool programs.  As a homeschooling family we have not chosen to send our children out to a preschool program or to a public school for their education. 

For Mason this means two things.  First, we will seek out private physical therapy when needed.  We could drop him off at the school for therapy each week but we would not be welcome to participate nor would the school want us there.  To them we are a distraction. We prefer to know the exercises and activities the therapist does so that we can include them in our daily routine at home. Which is more effective?  1-2 hours of physical therapy a week or a daily physical therapy routine?  Obviously, the consistent daily effort is more effective.  Our plan is to seek a physical therapy provider who will help us develop a daily program addressing Mason's needs, then evaluate and adapt it as needed.

Mason's needs change.  Right now he cannot climb up the stairs.  Two months of wearing casts and not being allowed to climb has left Mason weaker.  A hip surgery has left him needing to learn new ways to climb as his leg now works differently.  Once a week therapy is the least effective way for Mason to regain the strength he needs.  One hour a week of helping him with a new climbing pattern will be ineffective.  He needs a daily workout, encouragement, and help practicing new climbing patterns.  We can do that at home!  Putting him in preschool isn't effective as he would still only have one hour at most of physical therapy a week.  The rest of the time he would be restricted to his wheelchair to do 'school work', exactly the opposite of what his body needs.

The original questioner also wondered about equipment.  The school district would not help with the cost of any equipment for Mason. We have to pay for equipment ourselves if insurance does not cover it.

The second aspect of the school question is the academics.  If you've read my other blog, Our Busy Homeschool, you have seen the rich opportunity homeschooling offers.  I know that homeschooling is the best option for our family.  Learning is a natural part of life and we treat it as such.  We do not believe that the 'one size fits all' educational model in our country is as effective as the personalized tutorial education homeschooling offers.  I truly think each family needs to do what works for them - be that private, public, or home education.  I'm grateful to live in a country where each family has options in the educational arena and the freedom to pursue them! 

Have you been enjoying these posts where I answer reader questions? If you have any questions related to Spina Bifida and it's effects on the whole family just ask! 

Knee Pads and Wheelchair Transfers

 

I feel like this blog is neglected a lot because right now Mason's health is not changing much and life is full and busy with eight children.  Last month I updated everyone on the upcoming surgery and we still have no official date set.  I plan to call next week to see if the schedule has opened on the computer for August. 

We have spent more time outside as the weather warms and it brings to light another thing we are trying to deal with - holes in clothing and bleeding knees.  Every single time Mason plays in the backyard (crawling) he tears holes in his pants or shorts at the knee.  And if I don't catch it soon enough he also tears up his knees and they bleed.  We have been on the search for a good solution, especially as it warms up and Mason wants to play outside for hours with his siblings. 

 

I finally bought several different brands of knee pads on Amazon in an attempt to find some that will stay on his knees.  His legs are not chubby at all (he's only 27 lbs) so getting something small enough is a challenge.  We finally found this set of elbow and knee pads and Mason can wear the ELBOW pads as knee pads.  If we put them on over his pants/shorts (to avoid holes in the clothing as well) they slip off and don't work.  When we put the knee pads on his skin they do stay pretty well.  The shorts or pants get holes and have dirt ground in so deep it is hard to get out, but that's better than Mason getting hurt.  We've resigned ourselves to lots of ruined clothing and I'm making a trip to the thrift stores regularly to stock up on cheap shorts for summer.  We're going to keep a few pair of shorts nice and not let him wear them outside, but then he's going to have a hefty supply of play clothes. 

 

We ripped up the carpet from the main living areas of the house a few weeks ago.  The carpet just made Mason have to work for every inch he moved in the wheelchair and crawling.  Ever since then he has asked to be in his wheelchair many times during the day.  He can chase after his siblings, spin around and dance, and roll quickly and let go of the wheels to keep cruising across the room.  He loves it! 

The other thing Mason is really working on is transferring into and out of the wheelchair from the floor.  It's hard work.  We started with a large pillow to climb on in front of the wheelchair, then he used the foot plate and seat to climb up.  Now we've progressed to a thinner pillow he climbs up from.  His right leg causes some problems because it is still contracted and gets in his way, caught on the brake bar, but he's determined and usually finds a way to get the leg pulled around it.  He is so small that it is too hard yet for him to get into the wheelchair from the floor, but as the pillow he is using only gives him about 2 inches in height I suspect he'll be strong enough to do it directly from the floor in the next year.

Getting down is another thing all together.  His preference is diving right off the seat - not a great idea with wood floors.  His legs can get caught up on the wheelchair and it's just something we're discouraging.  Instead we're trying to teach him how to push up with his hands and slide his bottom forward and down to the foot plate and down from there. 

Well, I suppose I had more to share than I expected!  I think that is everything new going on with Mason right now. 

Mason's Wheelchair Transfers - A Video

Have you noticed that I go in phases with the video sharing?  It just so happens that Mason had a first today that I wanted to capture on video.  Today was Mason's first physical therapy day since his spinal cord detethering last month.  Our PT has been working with us since Mason was tiny.  Today we embarked on the world of wheelchair transfers. 

Our goal in this, as in everything, is to give Mason as much independence as possible.  One logical area is getting into and out of his wheelchair, also known as wheelchair transfers or simply transfers. In everyday life he'll need to get onto the floor, into a chair at the table, into bed, onto the piano bench, in a car, and so on.  He'll need to get back into his wheelchair from all those places as well.

Our first goal is to help Mason learn how to get into and out of his wheelchair from a surface close in height to his seat.  As he builds upper body strength we will try transfers from and to the floor.  Today our surface of choice was the couch. 

There are several smaller skills that go into this, things I never would have thought of.  Mason has to reach the seat, get into it backwards, turn his body around to sit in the seat the correct way, move his legs and feet into position over the foot plate instead of stretched out over the brakes, wheels, or even the arms of the chair.  He needs to push up on the arms of the chair when positioning his bottom into the center of the seat because we don't want to risk another skin tear on his bottom.  It will be a process and quite honestly we didn't know how he would do. 

Want to see?

The physical therapist and I just told him to get in the chair and waited to see what he would do.  As you can see, he just got right in.  Goal number one - accomplished.  Now any time we are home Mason is responsible for getting himself into and out of his wheelchair using the couch.  When his physical therapist returns next month he'll have a lot of practice under his belt and we will fine tune his technique and begin attempting transfers from the floor, possibly with some assistance like an incline or pillow to put him a bit higher up.

Leg Contractures and a Last Back Scar Photo

A blog reader had a great question.  She was wondering what I mean when I'm talking about Mason's leg contractures.  I really don't have a great explanation without pictures so here are a bunch from this morning.  As you can see just from the first photo, Mason's legs do not stay stretched out on their own.  His right leg tends to be pulled up even further than the picture shows, but this is a good representation.  His right leg has the worst contractures.

Here is a view of Mason's right leg.  What I am doing is rolling his hip in so it is not frogged out and then trying to push it down into a straight position.  I'm pushing pretty firmly and it won't budge.  Six months ago it would have straightened pretty well.  Over a period of a month it went to about half this angle when Mason hit a growth spurt.  It has continued to get worse.

Here is a view of Mason's right foot.  I am attempting to push his foot flat like it would be to wear a shoe or stand on the floor.  This is as far as his foot will go, pointed like a ballerina a ways.  It, too, changed very rapidly.  When he was little this foot was so flexible.  Then it started only going to a flat position, then over the same month as the hip it stopped going flat at all.  Mason cannot wear regular shoes because his foot won't fit in them. 

Here is a view of Makayla holding Mason's left leg, hip rolled in, attempting to straighten it flat.  It goes much straighter, as you can see.  What you cannot see, or feel through a photo, is the tightness and tension in the hip.  It is beginning to contract and getting it this straight takes a good bit of pressure.

Here is me holding that left foot and trying to flatten it.  This foot is no longer flexible and is progressively getting worse too. 

These contractures began rapidly during a growth spurt because Mason's spinal cord is tethered.  Usually the spinal cord is floating around in the spinal vertebrae.  His has stuck to the scar tissue from his back closure because he's missing part of several vertebrae.  When the spinal cord is stretched tight like this it causes neurological symptoms and ultimately does permanent damage.  The detethering surgery Mason has on Monday will hopefully remove this underlying problem. 

That will still leave us with tendons and muscles that have contracted, or shortened.  Mason will probably need surgeries on the right hip, right foot, and left foot to lengthen or release those tightened muscles and tendons, followed by casts.  We don't know the details on those surgeries and won't until his tethered cord is fixed and things heal.  There is a possibility that some intense physical therapy will stretch the left foot back out and make some gains on the right hip and foot.  We will talk all that over with the orthopedic surgeon when we get to that point. 

To change topics for a moment - I wanted to share here photos of Mason's back as it looks today.  If you read back through the first year of his life we tried to update photos of his back scar as he grew.  With the surgery on Monday we will once again have healing to do and what is pale and much less noticeable now will become an angry red slash again.  I want these pictures to remind me that scars fade in time.

I took these picture in the middle of the day today.  Mason thought I was quite silly trying to fold down his pants and diaper, have him sit still, and take a picture from behind him.  And yes, he is the most handsome, cheerful little man.

Here is a close up of the scar.  Parts of it are original, from the day of his birth.  The outer ends were smoothed out surgically last May.  He does have feeling all along the scar and a little below it. 

Here it is from further away to give you better perspective on where it is.  I don't know where his new scar will take over the old one, or how much of the old one will be left.  The new one may be vertical instead.  It really all depends on Dr. G! 

Well, if you've read through this long post I thank you!  I hope that some of what I share here helps others.  As always, if you have any questions for me feel free to ask!  You can leave a comment or email me at tdrowlee1 AT gmail DOT com. 

Laying Around, Basketball, and Surgery Update

This laying around thing is hard!  We are being really diligent at spending most of the day laying down on tummies instead of sitting on the nice surgery site.  Mason is being patient some of the time and complaining about it some of the time.  This corner of the couch is ‘his’ spot, with a blanket covering the cushion so he can draw with a pen all he wants.  He loves pens. 

The incision looks good still, glue is mostly intact, stitches are intact, bruising and swelling is minimal.  Are we out of the woods yet? Not by a long shot!  We have 10 more days of mostly tummy time before we go in for a checkup and the we will most likely still be on mostly tummy time for a few more weeks.  

In the short sitting breaks Mason is allowed he is usually in his wheelchair.  It keeps him from scooting on his bottom, a big no-no right now.  He spent one day playing basketball with Mommy during sitting break so here are some pictures:

Mason has started holding the ball and wheeling over to the hoop, switching hands as needed.  It amazes me.  We use small, light balls that he can get a good grip on instead of the basketball a lot of the time.  We can also see that his core strength is improving because he doesn’t collapse over nearly as often when throwing the ball.    He has been making this face a lot lately.  It is Mason’s version of a smile.  Cute little teeth in a grimace.  Then he goes back to a relaxed face and moves on with his business.

Icky Factoid for the Day:  Giving an enema is messy.  Add in a child with a cough and it’s really messy.  As in splattering the nearby walls is a common occurrence.  In case you were wondering…I speak from very recent experience. 

Mobility + Ability = Toddler Fun

I have had a lot of toddlers over the years being a mother of eight.  Mason is not yet two years old and finding his stride in his own way.  Now that he is much more in control of his wheelchair he’s using it to get into things.  In these pictures he is reprogramming the dishwasher, opening the refrigerator, and putting away his cup of milk.

I am grateful for the mobility Mason gains with his wheelchair.  More than that, I am grateful that the child we were told would probably have some brain damage is developing his abilities on his own timetable.  He loves to crawl around, climb, and explore.  His wheelchair gives him a new height and way to explore.

He is one smart cookie and It is fun to watch him figure out ways to do what he wants!

Joyful Mason, a Cutie

While there are many uncertainties going on related to Mason at the moment health-wise he has no idea.  He is as joyful as ever and I thought it would be fun to share some recent pictures.  This collage is Mason attempting wheelchair basketball. We purchased this basketball hoop for a few reasons.  First, it adjusts from 2-4 feet, just under the size of our other indoor basketball hoop.  This brings it down to the perfect height for Mason to play basketball in his wheelchair.  It is a great opportunity for Mason to strengthen his trunk/core as he uses both hands to throw.  I have to say it becomes very obvious to me just how far he has to go yet when he’s playing basketball.  He is still not throwing the ball most of the time, more dropping it in the hoop.  On the occasions when he is too far back to reach the hoop he leans forward and collapses, unable to hold his upper body without using his hands. 

Mason finally attached to a lovey out of the blue one day.  This bear is super soft and snuggly and he sleeps with it in his arms.  He was giving Bear a ride on this day.

Mason seems to think anyone on the floor is fair game as a climbing gym.  He was climbing on me and snuggling.  Too cute!

This picture really shows Mason’s personality.  He loves his baby brother Samuel and will do anything it takes to reach out and touch him, even when we tell him too let Samuel sleep.  This picture also is a great representation of what I meant when I said he collapses forward when leaning.  He is laying on the swing because he can’t support his trunk with just his abs and back muscles.  To get up from this he uses his hands and pushes up on the foot plate or frame of the wheelchair.

Happy Saturday everyone!

Myelo Clinic–Things Not on My Radar

Time to update again!  Mason had his team appointment in Myelo Clinic yesterday so we’re full of information, not all of it good.  Read on! 

First we’ll talk about the good.

Mason is doing great from a occupational therapy standpoint.  He uses his fingers and hands appropriately to manipulate things, stacks blocks, does puzzles, passes things hand to hand, etc.  With the obvious long-standing limitation that he does these things best when he’s strapped into his wheelchair or something that supports his sitting so he can use both hands and remain balanced. 

Urology took a look at Mason’s bladder and kidneys yesterday by ultrasound and they look beautiful.  The ditropan (medication to paralyze the bladder) and cathing Mason every 4 hours (8am, 12pm, 4pm, 8pm, 12midnight) is protecting those organs well.  No changes here.

Weight gain has finally been accomplished!  Mason had not gained any weight in over 6 months, sitting right at 24 lbs.  He’s now 24 lbs 11 oz.  Slow, but it’s something. 

Eating skills are progressing again.  After all Mason’s oral aversion issues around the brain surgery fiasco last fall and winter was (5 surgeries in 4 months) he is about where he should be with eating.  He uses a fork well, is figuring out a spoon, and finally closes his mouth to take bites about 75% of the time.  This shows itself in big ways like Mason actually taking bites of a bagel or other food instead of everything needing cut into bite size bits.

On to the not quite great but also not bad news:

Poop is still a work in progress.  We’ve been doing daily cone enemas for a month or so to clean Mason out and keep poop off his butt wound.  They work most of the time in combination with his Miralax.  We’ve reduced the Miralax drastically over the month to find a balance between soft enough for the enema to work and firm enough that he’s not pooping in between enemas and getting his wound dirty (infection risk).  It’s just a balancing game that varies daily based on what Mason has eaten and drank that day.

Wound Update!!!  He is healing S.L.O.W.L.Y.  He had some dead skin building up around the edges of the wound in calluses so he had debriding yesterday.  It sounds nicer than it is.  Basically they laid him on his belly and went to work with tweezers and a scalpel to cut off tissue.  Mason didn’t feel a thing, of course.  As a matter of fact his reaction was to fall asleep for his nap.  Yes, I’m serious.  They didn’t get all the calluses off but we’ll see how they’re doing in a few weeks.  Here’s a picture for those who have asked.  We’re to keep changing his bandage with every diaper change and continue limiting his sitting time in things like the booster seat at the table, his wheelchair, etc. 

The Bad

Now we come to the part of the visit I don’t want to think about.  The scary part.  You see, going in I had a page of questions and concerns.  It’s the only way to keep track of everything when seeing so many specialists in one day.  On my list was a reminder to let the orthopedic surgeon know Mason’s right foot/ankle and hip have had drastic changes in the last two months.  They have always been ‘tight’.  The hip is hard to straighten, the foot/ankle is hard to bend into a ‘flat’ position like when you are standing.  Which is why I do stretches and physical therapy several times a day with Mason. 

In the last two months it hasn’t mattered how diligent I was, we were seeing things regress.  We can no longer straighten his leg at the hip completely and cannot get his foot/ankle into a flat or neutral position.  That triggers a few problems, including not being able to fit/wear his HKAFO braces for standing, not being able to wear the foot brace at night without bruising, not able to wear any structured shoe, etc. 

We saw the physical therapist first.  She quickly told me I was right, there was a significant difference, and went to grab a few people.  Neurosurgery and orthopedic surgery.  WHAT?!  Neuro?  I knew that was not a good sign. 

The neurosurgery nurse asked me just two questions to start:

1. Has Mason had a significant growth spurt in the last few months?  Yes, he’s gained nearly 2 inches.
2. What changes have we seen in his body?  The ankle and hip contractures.

Then she said words that hadn’t even been on my radar.  “We’ll need to check for a tethered cord.”  My heart dropped into the floor.  I knew in theory that one day Mason might face that.  You see, when your spinal closure is done at birth the cord and nerves may begin to attach or tether to the scar.  A spinal cord is not stretchy.  Often when a child has a growth spurt their body stretches and the cord does not.  That causes neurological symptoms, and very often damages the spinal cord or nerves further. 

If Mason’s cord has tethered they will do a surgery where they try to separate the cord and nerves from the scar.  In the process there are very real risks that they will cause MORE damage to Mason’s nervous system.  In other words, he could come out of surgery with even more paralysis and problems.  For example, that hip function he has, the ability to pull up at the hip, could disappear.  The weak abdominal and back muscles we already fight to help him sit and balance could be made weaker or completely paralyzed.  I just don’t want to think about it. 

I’ve gotten comfortable with Mason’s disability.  Things like a wheelchair make me happy, they give him independence.  I’ve accepted what limitations he has and thrill to watch him push and make the most of what he can do.  A tethered cord could make us go through the process all over again with new levels of disability.  Loss of function.  Three little words that could change everything.  Again. 

What Comes Next

There is still a possibility that Mason’s cord is not tethered.  We may just be facing some leg surgeries to cut tendons, casts, and a lengthening process.  If I had to choose I would take that in a heartbeat.  Even if his cord is tethered we may end up needing those surgeries too, to stretch out and lengthen things that have pulled tight.

We expect to hear from the neurosurgeon Monday with a plan for a sedated MRI of Mason’s spine.  Under general anesthesia they’ll take a series of pictures and compare them to his baseline MRI done earlier.  They will look for changes and go from there. 

Another scary thing to think about is that a tethered cord can happen again.  And again.  And again.  And each time there is a risk of doing more damage. 

In My Head

How does this feel as a mother?  Terrifying.  Helpless.  Angry.  Peaceful.  Talk about a contradiction!  While I want to cry and shake my fist and pound on the doors of Heaven asking ‘why?’, when I look back at Mason’s life so far I have peace.  I always remember the very first priesthood blessing I had when we learned Mason would be born with Spina Bifida.  Here are my thoughts from the very first post on this blog:

“…the blessing only confirmed in my heart that this is not going to be an easy journey.  There was no promise of healing, that the troubles would all go away.  Instead I was promised physical health and strength to bear this burden, that it will be used to draw my family closer together, and that God was with me and with my son.  I was told this is no accident, God planned this path for our family, and gave this body to my son to accomplish God’s purposes.  I know that His plan is the best one, though it is often not the path we would have asked to walk.”

I know none of this is a surprise to God.  He’s with Mason and He is with us on this winding, uphill climb.  The best part is that He never leaves us to climb alone.  We have the God of Heaven and the Savior of the World on our side.  He is strong when we are weak.  His atonement strengthens us to take one more step.   He gives us peace no matter the circumstances and he loves us through our tears, our anger, and our fear.  His mercies are new every morning.