An Overdue Update

I realized that last year's posts were filled with sick kid updates.  Thought I would update.

Matthew saw an ENT in September.  I knew his tonsils needed to go but had heard that most doctors these days do not want to remove them.  I was ready for the battle with a list of illnesses and medications.  The doctor took one look at Matthew's tonsils and said "how does Dec 6 work for you?"  No argument, no battle.  Only a compassionate doctor.

So, in December, Matthew had his tonsils and adenoids removed.  It was a tough few weeks, but since then he has been healthier then he has been in 18 months.  Best decision ever.  Even Ryan has been healthier.

Some days I think as a parent you need to have a medical degree.  For years, Matthew has not been able to fly well.  His ears NEVER equalize while flying.  I've tried everything.  Gum, drinks, medication.  Nothing works.  Until now.  Adenoid removal.  Now his ears are clear flying.  Turns out, if you research adenoids, when swollen, they block the Eustachian tube and you can not clear them for flying.

If only I had know.  All those flights to St. Louis. 

Poor kid.

But that is the past.  As always, we look forward.  No sense in looking back.

A New-ish Kind Of Surgery

I was told about Dr. Susan Mackinnon from Washington University in St. Louis and her nerve work, last year from another Mom of another neuro clubfooter.  It sounded fascinating and that Mom was going to try and get her son in to see her.  Long story short, it didn't work out.

Anyways, this is the reason why we were very excited to hear about Dr. Susan Mackinnon and her close proximity to Dr. Dobbs.

Nerve transfer operation restores hand function for paralyzed patient

 

Surgeons in St. Louis, Missouri, have restored hand function to a 71-year-old paralyzed man — the first reported reactivation of muscles in thumb and forefingers after a spinal-cord injury — thanks to a new operation called a nerve transfer.

You can read the whole article here.

http://www.medicaldaily.com/news/20120515/9890/nerve-transfer-rewiring-paralyzed-hand-quadriplegia.htm

It is fascinating and amazing and really so very simple.  I think this could be too late for Matthew as he has already had the tendon transfer, but for other kids coming up this could be a breakthrough for them.

I would also interested to hear if Dr. Dobbs has any thoughts on this. 

I know it made my day just thinking about the possibilities!  What a breakthrough!

He's Got Rider Pride

We are back from St. Louis. These 36 hour visits are tough on us both.

So some answers. First, yes. He is again in a cast. This time, green and black (there is no white) for his favorite CFL team, the Saskatchewan Roughriders. As you can see, he is a very proud Rider fan.

It is a full leg cast. The last time we did a half leg cast and honestly, everyone involved from myself to Dr Dobbs to Steve who we saw today, feels it was of no benefit. Sadly, it will be the last half leg cast.

Now for the answers.

The callous that has been developing on his heel is purely skin. YAY!!! Did you hear me scream YAY at about 8 am yesterday? It was that much of a relief.
This is what the callous looks like. You can see by the shape why I thought that it could be bone being laid down.



And his leg length discrepancy seems to be holding steady for two years now. Again, another big YAY!!!

We had to wait a long time to see Dr. Dobbs. The man has become increasingly busy. We don't mind waiting, honestly. We travel a long way to see him, and he knows what he speaks of and he knows how to deal with this. We waited for about 4 hours for him. And this time we did NOT leave the room! Last time, we made the mistake of going to the bathroom and getting a coffee and missed him! Had to wait again!

So this time, we waited. And when he did get to us, he apologized, and Kristina apologized and everyone else apologized. What a breath of fresh air. They didn't need to apologize. We know how busy he is. We know how fortunate we are to be able to see him. We know how amazing that whole team is. And how humble they are. What a wonderful group to work with. And how wonderful for them to recognize us in our wait. So many times you see a doctor and you feel like a number. NEVER with Dr. Dobbs and his team.

And the update.

His foot is tight, but that is just what is going to happen when he grows. And if you remember, he just grew out of all his shoes in March. So we are definitely dealing with yet another growth spurt.

Dr. Dobbs is pleased with Matthew's lateral motion. If you didn't see it before, in April we saw this which I was thrilled with. And it has gotten even better. Will have to video tape when the cast is off. Amazing when a year ago it was barely a flicker.

He said with this getting stronger, that one day it would take over and work with us, keeping his foot in place.

Wow. It is like seeing that light at the end of the tunnel, no matter how small or dull. There it is. Finally.

I asked about physio. Dr. Dobbs wants him back at weekly physio. We had dropped it to every two weeks. Will step it up again. Dr. Dobbs also said, "If I remember correctly, his p/t willing to tape?" Yes. (In fact Steve had said that he would tape rather then cast so I could go to my reunion) Dr. Dobbs would like Matthew's foot to be taped after every physio appointment and leave it on for a few days. Just to get that extra stretch. Will do.

And to keep up with the E-stim. Yes, most definitely. Dr. Dobbs asked what Matthew had it turned on to at home. I said '3', almost cringing, expecting him to say that wasn't enough. But never from him. He said that was fine. In fact, I told Dr. Dobbs that Steve was talking about using a stronger E-stim machine while at physio. I said that Steve told me that he pushes on Matthew like he does an adult and that Matthew never complains. He smiled and nodded. Like he knows, because I think he just does know.

And just before he was casted, I shared with the team a poem Matthew had written in school. They wrote many poems, subjects always up to them.

This was the frame work for Matthew's Cinquain.

Cinquain Pattern #2

Line1: A noun

Line2: Two adjectives

Line 3: Three -ing words

Line 4: A phrase

Line 5: Another word for the noun.

And this was his poem.

St. Louis
helpful, kind
helping, casting, caring
helping people when they have a broken leg
casting

All of the people seemed touched. But Dr. Dobbs especially. I said that St, Louis and casting was a big part of his life. Dr. Dobbs said 'Definitely.'

Yes. Definitely. That city, those casts, and more importantly, those people involved have become a huge part of that little 8 year old's life. Slowly, slowly, bit by bit (sorry, can't help but quote the Digging-ist Dog) we are assembling an amazing team for Matthew.

One day, we will emerge from this tunnel. I know it now. I can see the light.

Safe and Sound in St Louis

After a long day of travel, we are here at Haven House in St. Louis. Matthew doesn't want a cast, but doesn't seem to upset when I tell him there is a good possibility. We brought the crutches just in case.

Tomorrow will be another long day. At the hospital by 7:30 until 2:00. Then back to the airport. We arrive home at 10:00 pm, so by the time we clear customs and cab home it could be close to midnight.

Will update Tuesday if I can.

Back To That Foot

Again, not posting. So much going on. If I find some time, I will share.

Back to that foot. Matthew's next appointment in St. Louis with Dr. Dobbs is Monday. Four days from now. I am now convinced he will be in a cast. So much so that I have cancelled our plans for that week.

See, I was supposed to go to my 25th high school reunion. Yes...you read that right ...25th. But if Matthew is in a hip to toe cast, I can't ask him to ride in the back of a vehicle for 6+ hours. Only to arrive in a place where he can't do any water activities, quading, or anything that doesn't include sitting.

Yes, it is true that I haven't seen some of these people for 25 years. Yes, it is true that I was actually looking forward to catching up. Seeing some of these people, hearing about their adventures. Seeing pictures of their kids.

But that's ok. In the long run, Matthew is what matters. We waited 11 weeks for this appointment. And it is needed. He is on the outside of that foot so bad now that even his teacher today noticed. Not good.

Matthew had physio yesterday. First Steve told me that he could not believe how hard he pushed on his foot. As hard as he does on an adult... and Matthew NEVER complains. In fact, he said that some times he thinks to himself, 'I shouldn't do this, he's only 8'. Wow. Then he told me that I may have something there about that 'callous'. He said that I may be right that there is more to that callous then meets the eye. He was happy to hear that I emailed Kristina and that Matthew will be X-rayed for leg length AND his heal. He also agreed with me that a cast is most likely needed.

Wow.

Did I actually hear that right? Did my always positive 'I don't think he needs a cast' Steve say that? Yes. Bless his heart, when he found out I was cancelling my 25th reunion, he told me to tell Dr Dobbs that he would be willing to tape again, and to teach me to tape.

Wonderful idea. But not the answer. He needs a cast. And even Steve knows that this time.

Matthew knows this too. I have to tell him my suspicions. He is ok with it. Kind of.

Enough negative. Here is today's positive.

I was at the school today volunteering. They had an old fashioned sports day at school. Great fun! Matthew's teacher knows of his upcoming trip because he is going to miss the last two days of school. She told me that both her and the phys ed teacher are both in awe of him. That despite his foot problems, he is one of the fastest runners, strongest athletes, never give up kind of kids they have ever seen.

Yes. That is Matthew.Go hard in everything. Always.

Love that.

Frustrated and Thankful

I am trying to set up Matthew's next appointment in St. Louis with Dr. Dobbs. He has become so busy now that it is really hard to get in to see him at Shriner's.

I sent an email to Kristina to see what days from April 18 - June 27 we could come in. Seems that of those 11 weeks, he is only available for 2 dates, and one of those is the only date that doesn't work for us because Craig can't take that day off of work.

I am so frustrated not because of the heavy workload Dr. Dobbs and his staff have taken at the Shriner's recently, but because of Matthew's old surgeon here.

For those who don't know the whole story, you can read it here. The short version is, when I asked Matthew's pediatric surgeon of 6 years if we could possibly go to the US for a second opinion, he was very rude and condescending to me, telling me that the doctor I had found was a nobody, that I had been internet shopping and that he refused to sign the paperwork that would allow me to obtain out of country insurance to see Dr. Dobbs. He happens to be the head of pediatric orthopedics in the city and works with all the other surgeons here. So, with him refusing the sign the paper work, my only other option was to go through Shriner's. Which we did and were so fortunate to have them immediately start the paper work for Matthew to see Dr. Dobbs.

And now, with Dr Dobbs so busy, he is now seeing older children at the Children's hospital to try and relieve some of the workload at the Shriner's. If it were not for the arrogance of the surgeon here, we would be able to see Dr Dobbs at the Children's. So frustrating.

And, I think I recall a clause in the paperwork for out of country insurance stating that if you start going out of country before obtaining the insurance, that you can not go back and request it after the fact. So, even if the surgeon here had a change of heart, my hands are still tied.

Frustrated. In fact, beyond frustrated right now.

And yet, so thankful.

Kristina (Dr. Dobbs' care coordinator) has spent the better part of the morning emailing me back all kinds of information to try and get Matthew in to see Dr. Dobbs at the end of June. Dr. Dobbs, Kristina and the team are beyond busy at the Shriner's and yet, I still get emails back immediately and they are bending over backwards to make it work for us.

And so thankful to the Shriner's, who took one look at Matthew's file and Dr. Dobbs' credentials and knew right away that this was the doctor for Matthew. AND had the paperwork and funding for him with in a week.

So, today, I am frustrated and yet thankful.

Broken Record And Christmas From St. Louis

I know I sound like a broken blogging record when I say I haven't been blogging, I have been busy... but I have been busy. Sorry. Will get back to blogging if not now, at least in the new year. Thank you to all who called, emailed, or called my parents as a virtual kick in the butt. Will try harder...

First things first, Disney was beyond words. I think I have finally finished the movie... will post it here soon. Suffice it to say more fun then ever thought possible, and even more memories.

Second, St. Louis.
Matthew went back to St. Louis to see Dr. Dobbs on the 13th. Went down as always, hoping for the best, preparing for the worst. Didn't even take before photos. For those of you following for a long time, you guessed it, there was a cast. Even despite Matthew's plea



We were lucky enough to have Dr. Dobbs not only look at, but cast his foot. The best news was that because dorsiflexion was good, just the fore foot was drifting (metatarsal drift) he only got a half leg cast(yes, Dr. Dobbs DOES do half leg casts...Christmas colors of course.

As always, the people we see in St. Louis were wonderful. From Jeff who called us to see if we were stuck in the snowstorm, to the family who organized the craft at Haven House, to Kristina and all the staff at the hospital. You made this trip feel like home. And a special call out to Bill, from the Shriner's, who always seems to find us and make things feel more like home.

Matthew's cast will come off on the 22nd. Just in time for Christmas.

Excuse Me, Have You Seen My Head?

Wow. I have been running around like a chicken with my head cut off these days. Just realized how long it has been since I had time to blog. Not that I even have time right now...

What's up around here? Well, the most exciting news is we are taking the boys to Disneyworld next week. So I have been planning and getting ready for that. Let me tell you, either there is way too much to do there, or I over plan way too much. Suffice it to say I have been very very busy with that. Excited, but very busy.

Also been trying and trying to get Matthew's latest AFO to fit properly. Any of you with kids in an AFO know what I mean. You take your kid out of school for an appointment, the AFO gets adjusted, he wears it a day or two and says it bothers him elsewhere. So you make another appointment, take him out of school, get the AFO adjusted...etc. Sort of like Groundhog Day. Still stuck, still trying...

Also have our next appointment for St. Louis. We are heading back in December.

Been dealing with a not so fun problem with Ryan. I think he actually has a medical problem called Encopresis. Things have been getting worse lately so I am trying to get him in to see a specialist. Our GP was not forthcoming with the referral so after some research, I am going back in and getting the referral I want. This kid has had pooping problems since the beginning including 18 months of diarrhea (yes, you read that right 18 long long months). We need to see this doctor.

And Craig leaves tomorrow for a hunting trip. So, that means I get to pack up everything for the boys and myself for the vacation as well as get them to Disney by myself, Craig will meet us there 24 hours later.

Along with regular life and volunteering in the school twice a week has pushed me beyond my limits and time constraints. And as I say that, I have to run and get the boys from school, take them to their hair appointments and then run home to make dinner.

Hope to have some good news about Ryan soon, at least good news in that I will be taking him in to see a doctor that specializes in this condition.

Frustrated And Confused

Since school started, I have been trying to get Matthew to wear his new brace. He goes to school with it, but it is always off by recess time (2 hours later). I can see where it is bothering him. Have taken him in to our orthotist to try and have it adjusted, but the adjustments that can be made are not helping.

The new brace was made straighter and higher at the toe to try and stop the front of his foot from turning in. I completely agree with that.

Comparison of old AFO and new AFO.

But that is where the new AFO is bothering him. You can see how his foot turns right at that spot.

Braced.

Unbraced.

So, the part of his AFO that is to keep his foot from turning, is causing him to remove and not wear his AFO...which will lead to more turning of his foot. Arrrggghhhh!

Simple solution, cut the AFO down at that foot part. But, the purpose of this AFO was to try and stop that foot from turning.

Round and round we go.

I am going to send an email to Dr. Dobbs and Kristina this evening. See what their thoughts are. We don't go back to St. Louis until December.

In the meantime, he has been happily wearing his old AFO.

Oh, and another update...Ryan's eye. A real beauty in the works.

St. Louis Through The Eyes Of A 7 Year Old

So busy round here getting ready for the end of school, dealing with sick kids, and getting ready for trips. Here are the photos taken by Matthew from St. Louis last week.

First, just for fun. This was what the squirrels were doing at 6 am.


Hospital waiting room.

Walking to our room.

Our room.


Chairs in the room.

Shoes off.


Matthew's file.


Matthew's...nose.

Exchanging emails.


New friends.


Casting for a new brace.

The newest AFO.




Today is the last day of school. Hoping that means things will get back to a calmer pace. I need to take Matthew's AFO in to the orthotist here for adjustments. And for a discussion of a leaf spring AFO.

No Cast!!

For the past year it has felt like groundhog day. Go to St. Louis, get cast, go home, foot turns, go to St. Louis, get cast, go home, foot turns, go to St. Louis...

This time, it was different. This time, Dr. Dobbs felt his foot and said it felt good. We showed him how Matthew is starting to move his foot to the outside. Dr. Dobbs looked up with a look I had never seen before and said, "that's impressive"

And this time, he recommended no cast.

He also recommended starting E-stim with p/t.

What a different appointment. What a great feeling!

Matthew also got a new AFO made and we are discussing trying a leaf spring AFO like the one below.



Need to discuss this more with Matthew's p/t and orthotist.

It has been a busy week but I hope I can find some time to update more details of the trip including meeting another child with the same problem, and some pictures.

Right now, we are off to Matthew's last baseball game, the one we thought he wouldn't be able to play.

Life is good.

Meet Me In St. Louis

I've met someone...online. Boy, that sounds bad.

Just over a year ago, I found a mom with a little boy (now 2) who has the exact same diagnosis as Matthew. Exactly the same. Clubfoot, nerve damage, leg length discrepancy. It has been a great year of sharing, comparing, asking questions, and trying to figure things out. And now, finally, we are going to meet in St. Louis. Her little boy and Matthew both have appointments with Dr. Dobbs at the same time. Not only that, but we get to fly in Sunday afternoon and visit at Haven House.

I am really excited to see her little guy for many reasons. I want to see another little one with the same issues. I wonder if he has the same gait Matthew had, the same tripping problems, the same look to his foot. He is also sporting a new type of brace that I am very interested in seeing. One that could allow for more calf muscle development.

And I am excited to meet his mom. Talk with someone who is dealing with the same issues of AFO's, shoes, bracing, p/t, etc.

So, Jamie, I am really excited to meet you! If Haven House is funny about leaving messages for each other, we will be in one of two places, crafting in the craft room, or, most likely, running around kicking balls, throwing Frisbees, shooting hoops, in the gym. Oh, or maybe outside hunting for praying mantises. Just follow the noise.

I'll update my blog when I get a chance. Still hoping for no cast, but prepared for one.

Getting Ready

We leave for St. Louis in four days. Trying to get the last things done before we go.

Crossed this one off my list yesterday. New pads for the crutches.

Old pads.



New pads.


I had to raise them up a level as he has grown so tall. Only one more adjustment left on these.

Matthew was actually excited about the new padding. Hoping that means he is coming to terms with the cast possibility. I hope so. He just received another birthday invitation. This one for a pool party the weekend he could be in a cast.

Camping

Boys. Nuff said.

Their latest fascination while camping is fishing. The love to go through their tackle boxes, organize, reorganize, compare, and occasionally sneak a lure from Daddy's tackle box.

This is what happened Saturday morning while organizing...something went wrong I suppose. I call it Fishing - You're Doing It Wrong or Gettin' Jiggy With It.





Such a proud mommy moment.

Things did get back to normal, or as normal as boys can be after trying fishing and deciding the sand was more fun. Notice our friend's little girls so clean. My boys did not stay clean.



I didn't get a picture of Matthew. I was either laughing too hard, or was so unfazed by the filth that I never thought twice about it. Here is Ryan, much cleaner then Matthew ended up.



It was a wonderful weekend in the sun with great friends. Just what we needed on the last weekend before heading back to St. Louis and the possibility of casting again.

"I Am Not Going"

We leave for St. Louis in 11 days. I've been trying to prep Matthew for the possibility of a cast. In the past, he has been very easy going about this.

I don't believe in hiding things from kids. I told him that if he gets a cast, he will miss the last week of baseball, and that he will be in a cast for the birthday party of a friend. (the birthday party is at a gym where they will be playing hockey and soccer)

Matthew hid his face and wept quietly.

"then I am not going to St. Louis"

This time, maybe it is too much.
This time, maybe he is missing too many things.
This time, he is very sad.

Makes me a little sad too. I sometimes forget how much he has been through. What a brave face he puts on for the world. That he is only 7 yrs old.

I have 11 days to get him used to the idea.

And maybe, just maybe, this time...there will be no cast. It is my secret hope that I can't share with him.

We're Here

We made it safe and sound. Almost feels like a second home when the Shriner who picks you up knows us and the lady at Haven House remembers Matthew by name.

We have made crafts, colored pictures, built a fort, played basketball and soccer in the gym, had dinner, and are now in the computer room. Bedtime in an hour...for both of us.

Matthew's appointment is at 10:30 am tomorrow. Will update when I can.

Kinesio Taping

Matthew has been taped for almost a full week now. We had the tape changed on Friday and I am trying not to get too excited, but I think his foot looks good taped. He is still supinated a bit, but nothing like it does without the tape. Without the tape, it looks awful.

Matthew says his foot feels good taped too. He says it feels like his other foot. That can't be a bad thing, right?

And, when stretching him, I think he feels looser. But then again, I am just wishing for that and could be fooling myself.

Steve told me that by the time he is about 10 or 11 yrs old, he will be able to train himself to walk more on the inside of his foot and keep the position better himself. I said "oh good! Only three more years of taping his foot!" Steve just laughed at me.

We are getting a tape change today, then Wednesday (plus physio), then Friday. Then we are off to St. Louis Sunday and he sees Dr. Dobbs on Monday.

I am very curious now to see what Dr. Dobbs says about kinesio taping.

The Talk

We have had the talk a few times over the years. But it was needed again.

"Matthew. You know we are heading to St. Louis in 10 days."

"Yeah"

"Matthew, there is a good chance you will be in a cast again."

"I know Mommy. It's OK. Casts are no big deal."

"But Mommy...make sure you pack my crutches this time."

"Ok Matthew. I will make sure."

The ease and wisdom of a 7 year old scares me sometimes.

Trying Something New

Matthew had physio today. I told Steve that I was sure that Matthew's talus was protruding again. I even brought the pictures from last year to compare. He agreed, it had to be the talus.

I told him this is the pattern. His foot starts to supinate, the talus comes out, dorsiflexion decreases and it goes down hill from there.

Steve feels his dorsiflexion is still really good right now but after some thought asked if we could try taping to keep his foot pronated and keep his talus in proper position.

So, here we go... taping.

Btw, the green was added by Steve, seeing it is Matthew's favorite color.


This taping stays on for 2-3 days, then we go back in for a change of tape. We are going to try to keep this up until we go to St. Louis in 12 days. See what Dr. Dobbs thinks about it.

I'm not convinced this is will help, but it can't hurt. And right now, I am game for anything.

Kristina Rocks!

Kristina called me this morning. Yay! Seems that I got it mixed up, that it was her that sent the email. She just didn't sign it and that she isn't Dr. Dobbs Nurse Practitioner, she is his nurse co-coordinator. It is true however, that he is swamped and does not have time to see all patients at Shriner's anymore. If things are looking good, he will not have the time to look. If, however, things are looking like there will be a need for casting or surgery, he will take a look. But because he will be back and forth from the OR, there could be a wait.

So, I suppose at some point, when Matthew's foot stabilizes, maybe we will start to see someone closer and only head back to St. Louis if there is a problem. I am trying to use the word 'when' and not 'if'. I am still clinging to the hope that at some point in the future, his foot will remain corrected and castings will be a thing of the past. Hard to do right now when we are seven years into this and I see a cast in the near future.

Last night, I was reading through my blog and found a comment from Dr. Dobbs about Matthew's talus that I had forgotten. During a cast change I had asked about his talus. His talus is still noticeable and Dr Dobbs admitted that it may always be prominant. Guess that makes me feel a bit better about seeing it again. I still think it means we are in for another cast when we go in two weeks.

I've decided. I am packing the crutches.