The strange and mysterious ways of the world

Wednesday. Physio day. I usually dread Matthew's physio. It hurts him. He hates it. It usually ends with him screaming at me, or hitting his brother or just tears. And always outside of the building. Bless his heart, he waits til it is just us.

Today was different. It still hurt, a lot, but things are looking up. For some reason, he was almost at 90 to start. Last time, it took 20 min of stretching to get him there.

Yay for small steps!

I also chatted with his p/t. Told her I was seeking a second opinion in the US. Told her some of my issues and concerns.

he is relapsing
his surgeon doesn't want to see him until June
his surgeon doesn't think physio is necessary
his surgeon doesn' t seem to have the same concerns about the tall AFO reducing calf muscles
his surgeon seems to be waiting to do more surgery
his surgeon believes in below the knee casting

That last one made an ally out of her. She told me her concerns about below the knee casting based on her p/t knowledge. Made me realize I NEED to get Matthew to some one new.

She asked me who this doctor was and where he was located.

Here is where the world works in strange and mysterious ways. She said "St. Louis? Missouri? I have a friend who is a pediatric physical therapist who works in St. Louis. Would you like me to call her and ask for some information on this doctor?"

My jaw must have hit the floor. Seriously. How small is this world anyway? So of course I said "oh yes please!"

We chatted some more about Shriner's vs Alberta Health Care Out Of Country. She said to keep my options open that maybe there was a good doctor in Spokane that would be easier to get to.

And all the while, Matthew ran in the gym, kicking and chasing a ball. His p/t commented again on how she was amazed at how he can run. Which made me remember... I had meant to bring my video camera and tape his running for another mom of a little boy with a neuromuscular club foot. She has been asking me if, at the age of 6, he can run, play sports, and basically how he functions. I need to video tape him for her. And of course to post here as a proud mommy. I told his p/t that and she said "Oh yes! You HAVE to do that!" Hopefully next week.

When we got home, in the mail was theOut Of Country Health Care forms. Bleck. Lot's of stuff needs to be compiled. Lots of people need to be contacted. I thought it was jumping through hoops. Nope. It is a tight rope walk. And at the bottom it states, submission is not a guarantee of funding. Yay.

Note to self. Check out Shriners.

Then the phone rang. It was Matthew's P/T. She had already called her friend in St. Louis. Talk about fast! She had a bunch of information for me but in a nutshell was this. Her friend did not know him personally, but thought that with his credentials he would be the best person for Matthew to see. That his unique skill set was a beautiful match for Matthew's unique problem.

Yay!!!

Now to get us there.

And now...in the centre ring...

Queue the corny circus music, I am about to leap through hoops. At least that is how this feels.

I was almost in tears Friday morning after talking with Kristina, Dr. Dobbs' nurse. I know that she can't give me much information until Matthew is seen, but it makes it hard to plan. Seems that the first appointment will or will not be an informational exam, will or will not be the start of serial casting, will or will not be a pre-surgery appointment. This first appointment will or will not be the start of a series of appointments that may or may not be every week for as long as it takes. I know that they can not say for sure until they actually have Matthew's foot in hand (literally) but it makes things so hard.

I started to worry about all of this. What will I do if they need to serial cast him for 4-6 weeks? Would I actually fly back weekly at a cost of $1000 just for flights every week? Not to mention at least one night stay as the flights from here to there are crappy and take a whole day. Or would I stay there with Matthew? Leaving Ryan? Ship him off to Vernon for 4-6 weeks where he would most likely be so sad to be away from Mommy, Daddy, Matthew, his house and all his friends? Do I take both boys with me and live there for 4-6 weeks? The thoughts had me close to tears. Things were going fast with very little information to calm my brain.

Then, in the afternoon, I got a call back from Alberta Health Care out of Canada care department. All of a sudden, this fast train I was on derailed right in front of a circus tent. Seems that in order to get out of Canada care, there are many forms and many hoops to jump through just to get the chance for a committee to sit down and look through the information. They will then decide if this treatment outside of Canada is deemed necessary and not found in Canada. Then I will be able to access funds. How much and for what, I have no idea. Hoping the forms will explain that better. Hoping they arrive early next week.

Some of the hoops to jump through...

I need a letter from his current surgeon stating that he needs the care of the doctor in the states. Not sure why but this feels like a big hurdle. I have to go to his surgeon of six years and say "ya know, I think things are going nowhere with you, I want to see this other guy and you need to write a letter saying so" Feels awkward... but is a must. Will have to make an appointment.

I need to send Matthew's health history. The lady on the phone said "only send what is relevent to this health issue" I chuckled. His first appointment was at 4 days old and he is now 6 years old. His file at the children's is now over an inch thick. How do I get a copy of that and send it?

And the worst part, they don't meet again until March 18. So here we sit, waiting...

Now that I have had some time to process all of this, I can talk about it.

I sent an email to Dr. Dobbs this morning. It had Matthew's treatment history to date, some photos as well as my concerns. This is The letter I sent.

Dear Dr. Dobbs,

My name is Jo-Ann and I have a six year old son who was born with a left clubfoot and was diagnosed with drop foot at 15 months of age. He has been treated in Calgary, Alberta, Canada from birth but I am concerned with his regression and am looking for a second opinion for what treatment we should follow next.

The following is a run down of his treatment to date.

4 days old – started serial casting (below the knee)

3 months – Denis Browne Bar (DBB) but had many problems with it

4 months –preformed tenotomy, full leg serial casting then Denis Browne Bar (DBB) 23 hours a day

9 months (I think)- cut back hours on DBB

15 months – diagnosed with drop foot

He had a nerve conduction test as well as an MRI.

18 months – first non-articulating AFO

2.5 years – first in a series of articulating AFO's

4.5 years – botoxing with serial casting (below knee), back into an articulating AFO

5 years – post tibial tendon transfer with medial release, calcanial osteotomy and more botoxing. Casted for 6 weeks then into a new articulating AFO

6 years – new non-articulating AFO

Now at the age of 6, his heel cord is very tight again. He is no longer in neutral. He has some active dorsiflexion (but can not achieve neutral) and can sustain a hold, but the front of his foot is curving inward again as well as he is walking on the outside of his foot when not in his AFO. He sees a physical therapist every two weeks for stretching at my insistence and am currently trying to get more funding for more regular visits.

His current surgeon feels that within 6-12 months he will need to perform another tenotomy and doesn’t feel physical therapy is needed. I am concerned with the regression. I am concerned that it will only continue and am worried about multiple surgeries.

I have attached some photos of Matthew’s foot taken at one year post-op (Jan 22/09) as well as his latest AFO that was designed to try to reduce the ankle from pushing outwards.

I hope you will be able to give us some insight as to his care.

Thank you,

And this is what I got back in return

Dear Jo-Ann:

Thanks for contacting me and sharing your experience. I can understand how frustrated you must be. I do see a large number of children with clubfoot and associated muscle abnormalities and/or nerve problems.

There is no question that this type of clubfoot is difficult to manage. The key is finding out which muscles are working well and which aren’t which can help dictate proper decisions on future procedures.

I applaud you for insisting on physical therapy since this is crucial for long-term success in cases like you son’s.

It is hard to make specific recommendations without seeing your child. My general approach would be to start with serial casting to correct as much of the deformity as possible before deciding on surgery again.

I would also recommend different bracing. The brace he has is quite large. You can control his ankle with a much smaller brace which would have the advantage of allowing him to develop more muscle strength. Use of brace that large will only further weaken his leg which makes things worse in the long run.

I hope this helps. Let me know if I can be of further assistance.

Respectfully yours,

Matthew Dobbs, MD

I then asked if he could see Matthew and he said he would ask his nurse to set things up for us.

So, I am thrilled that we will be heading out at some point to see him. Unlike Matthew's current doctor, he has experience with this unique combination.

I am also worried. What will this entail? How hard will this be on Matthew? How hard will this be on the pocketbook? Who will help with funding? Should I sign Matthew up for T-Ball?

The questions are endless, but I suppose they always are with children. The only difference are the questions.

Yahhoooooo!!

I sent an email this morning to Dr. Dobbs and have already heard back from him. Of course it is a good news bad news sort of thing. He agrees, Matthew's treatment needs to be changed. He is on the wrong track. But the good news, he is having his nurse contact me about getting Matthew down to St. Louis to see him. Yay!!!!

I'm so excited!

infertility

I found this in my blog travels today. Infertility/Adoption Essay Contest

I am aware that I am not a writer. I am a scientist by heart. My writing is more like lab results. Precise and to the point, no elaboration at all. But for some reason this tugged at my heart. Not sure why, maybe because we are coming up on March. March was the start of our infertility journey, and somehow it all came full circle when Ryan was born in March, 5 years later.

Infertility never truly leaves you. Pregnant and even with toddler in tow at the bookstore, I would pick up a new infertility book and scan it. Something that profound changes you forever but still for some reason it is not mainstream conversation. It is still a conversation for back rooms and hushed voices. That needs to change.

So, if I do end up writing something, I may post here first, get some feedback first before sending it on.

Of course that all depends on if I can find some time between now and the 18th when the contest closes.

a jumbled Monday

I got a letter from Matthew's P/T office today. I was so excited! Thought, YES!!! The funding how come through!! Yay!!

It was not. It was a bill. Bleh. Four sessions - $200. At this rate, we will eat up Craig's benefits in 2 1/2 months. I sure hope that funding comes in soon.

One another note, I have not written the email to Dr. Dobbs yet. Matthew has been really sick the past few days. I took him in today and his doctor wants him to have chest Xrays tomorrow to see if he has pneumonia, broncitis or if he just has the flu and his asthma is really bad. So I have spent the days and nights cuddling a sick boy. No time to compose a semi intelligent email for a doctor.

Hopefully this house will be on the mend in a day or two and I will find some time to get the email ready.

Amazing

I can not believe it. In fact, I am still at a loss for words.

Last night, just 24 hours after joining a clubfoot group and introducing myself, I was contacted by someone who also has a son who has clubfoot with nerve damage.

This is the first time I have ever talked with another parent who has the exact same problem as Matthew. I felt like I was reading our own story when she talked about her son having a Nerve Conduction Test to confirm the nerve damage and an MRI of the spine to rule out tethered cord.

She told me that she knows of 8 other families in the US that have this unique problem and is inviting me to chat with some of them. Honestly. Speechless.

And the best news yet. She gave me the contact information for a doctor in the US who has dealt with this unique combination.

I will be composing an email and sending it off in the next few days.

I have not been so excited to contact a doctor in a long time!