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.

St. Louis, The Good, The Bad, And The Ugly

We are back from St. Louis with an interesting update.

First of all, the good.

We were sitting in the waiting room at the hospital. I was reading my book when Matthew said "Mommy! I see my friend D!" I told him, no that I didn't think he would see his buddy there. (He made a friend in St. Louis his first trip there in May and saw him a lot) I looked up and sure enough, there he was! Talk about fate! We had all flown in for an appointment that day without knowing the other was there. The boys were thrilled to be able to see one another again and to play at Haven House later.

The other good... Dr. Dobbs was happy with Matthew's foot. He said it still looked good.

The Bad

Matthew's heel cord has been getting tight despite all the p/t. Dr. Dobbs thought it would be beneficial for him to spend a week in a cast. Get a good long stretch. Matthew was really upset about this. He really didn't want a cast again. He had some tears when we were left alone. He cried because he would miss swimming. He cried because he didn't want to fly again with a cast. He cried because he wouldn't be able to do the monkey bars. He cried because he didn't want to have to go to school in a cast. But, by the time we made it to the cast room, he put on his brave face and sucked it up better then any adult could. Have I ever mentioned how proud I am of him? :)

The Ugly

Dr. Dobbs intern came in first and had Matthew walk. He immediately felt Matthew's hips. It was like a huge light bulb going off... leg length discrepancy. Sure enough. Matthew's left leg (clubfoot leg) is 1/2 inch shorter then his other leg. The X-rays they took when they removed his cast in May show it clear as day.

Why is this the ugly? Maybe because I am so mad that his surgeon here of 6 years never once measured for it. Never once mentioned the possibility. Never once said that clubfoot with neurological disorders often have leg length discrepancies. SIX years... not once. And Dr. Dobbs found it in Matthew's first post-cast appointment.

What is really ugly is that perhaps, if this had been caught earlier, he could have been wearing a lift in his shoe for a long time and maybe, just maybe it would have slowed his regressions or (maybe this is wishful thinking) prevented some of them.

I was able to pick Dr. Dobbs and Kristina (his nurse)'s brains while they casted him. Dr. Dobbs said that yes, it is possible that with the lift, it could reduce the regression. That his running/walking with his foot turned in could be due to the leg length difference. He also said that one day, Matthew WILL be done with casts. It will happen, he just can't tell me when.

Those were the most beautiful words I have heard in a long time. I told him I was going to hold him to that.

I have to say, Dr. Dobbs and Kristina are such a wonderful team to work with. We have been so lucky to have found them.

So Matthew got his cast (red with a green stripe - his choice) and it is straighter then any of his previous casts. It has made it difficult to move and impossible to reach his foot, but I hope, a better stretch.

Then, off to orthotics to get his brace fixed and to get a lift on the shoe that we had with us. The entire black portion on the bottom is the lift that was glued to the shoe. I have an appointment to take his other shoes in here to have lifts put on them.



Then, back to Haven House to play with his buddy.


What is under the cups? Why praying mantis's of course!


We are now back home and Matthew has not complained once about his cast, save for this morning when he said he had to show me something. I took a peak at his big toe. It was covered in dried blood. The fiberglass was a bit too long and digging into his toe. I got out the scissors and cut it back. He said thank you and ran off to play before school.

Man... that kid is one tough cookie. Makes my heart swell with pride.

Crutches

Matthew went to school today. When I dropped him off, I noticed his p/t was there and had just finished up with someone. I chatted with her about Matthew and his cast and his trip. I asked about getting crutches. Her first response "any other kid, I would recommend crutches, Matthew is so fast and so adaptable, he can probably get away without them" But after some more conversation, she decided that he should get some for the exact same reason Sue said (thanks Sue, you were spot on!). She was worried that hobbling for 6 weeks could take its toll on his hips and toes. So off I went in search of pediatric crutches.

Turns out that is no easy feat. Let me re-phrase that, it is no easy feat for some one who was casted outside of the city. In order to get those crutches, I needed to have a letter from an orthopedic doctor from the hospital. She said I could go and see one of the doctors there and they would write up a letter for me. Had to laugh, with my luck I would see Matthew's surgeon who was not impressed with me taking Matthew to see Dr. Dobbs.

I went to plan B. Called all over the city. No one had pediatric crutches, except for one place. Yay! I picked them up and took them to the school so Matthew could try them out with the p/t there. No go. Even though they were rated for kids 4 feet and under (Matthew is 3 feet 9 inches) they were too small.

Back to the store I went. Turns out no one rents crutches that size, you buy them. So I went to trade them in for a bigger set. No go. The next size up was for 4 foot 6 inches and taller. They were way too big. Turns out the man at the store was another angel in disguise. He said he had an idea. He had a broken set of adult crutches in the back. He took off the leg extender from those and put them on Matthew's set. Perfect fit. No charge.

Gosh, this road we are on is hard, but we have found such wonderful helpful people along the way. We are so lucky.

As promised, here are some photos from the trip.

Matthew in the airport with the birds he bought, one for him, one for his brother.

No Mommy, I am to tired to get up.

In the exam room. Did I mention he got a stuffie EVERY time he went to a new area?

One last photo of his foot before casting.

New best friends waiting for a spot in the casting room.

New friends and new casts.

Resting at Haven House.

On the plane ride home with his new collection of stuffies thanks to the Shriner's.

We are home

We had a rather uneventful trip back, only one plane problem that was only a 30 min delay.

Matthew is doing great and is even learning to walk and yes, run on his cast. It is a sight to see. His leg is cast at a 90 degree angle so he walks on the toe of the cast and hops a bit. Necessity is definitely the mother of invention.

We are both burned out right now. I thought about it, we spent 11 hours in transit on Sunday, 7 hours at the hospital Monday, and 9 hours in transit today. I am looking forward to my bed tonight and looking forward to NOT waking Matthew up in the morning. He can sleep as late as he wants even if it means missing school. Watch, he will be up at 7 am, bright eyed and bushy tailed.

I will upload some photos tomorrow. I need to try and contact the Shriner's and make some new travel plans.

The flights are booked!

Gosh, this is all happening so fast. I had a message on my machine after dropping Matthew off at school this morning. It was the travel agent ready to book our flights.

I called her back and we are now booked. I called Craig and told him, his reaction was "I guess you really are going then". Ummmmmm YEAH!

The flight times are not the greatest but we had to go with the cheapest not the most convenient and seeing that Shriner's are paying, who am I to argue?

We leave early in the morning on Sunday March 29 and arrive back in Calgary Tuesday March 31 in the early afternoon.

Now for the hard part. I have to tell Matthew.

Thanks, I needed that.

First a small update on the Dr. Dobbs appointment. Matthew has an appointment March 30 at 8:30 am. The Shriner's travel agent is going to call me back later today with flight and accommodation details. Shriner's is covering both of our flights as well as accommodation and meals.

I am so thankful.


Winter Camping update.

Our first foray into winter camping was a HUGE success. First of all, we had fantastic weather. Sunny, clear blue skies, not a breath of wind and this was the view. At night it was about -10 C (14 F) and during the day was 6 C (43 F). Our trailer was toasty warm, in fact I was warmer then when we had the tent trailer out in the summer.

A weekend away was just what I needed. It was a quiet, relaxing weekend filled with fresh air and exercise. No one wanted to leave Sunday afternoon. In fact, the boys were desperately trying to talk us into just one more night. Guess we will have to get out again soon before Matthew gets casted. Who can resist this much fun?

In shock

I jumped onto the computer to blog about how I dropped the tire off this morning at 8:30, dropped the kids off at school, got groceries, picked up the tire and am now getting ready to load the trailer.

I turned to the answering machine to see the flashing light, hit play and hear a voice telling me that he has spoken to Kristina in St Louis and our possible appointment dates are March 2, March 9, or March 30. What?! This is INSANE!! I just called Shriners last week about this time!

I am so shocked that I can't even call back yet, I need a few minutes before I call, I can't formulate a proper sentence yet let alone think of when all this needs to start.

One thing I need to take into account is Ryan's 5th birthday is March 18 and he will be having a party. Can't have Matthew and I away for that.

March certainly has become a significant month in our lives.

All Aboard!!

Looks like we are back on the crazy train to St. Louis!

I am still in shock. I called our local Shriner's yesterday morning. I was told that the application forms would be dropped off in the afternoon. When Dave arrived with the forms, I was unprepared for him to take off his shoes and jacket, sit at the table and pull out a pen. He was going to get them filled out now and sent in the following day!

Filling out these forms can be amusing. One of the questions is 'how many treatments has the child had'. I asked what that meant, surgeries, appointments, casts...? He decided to break it down. He asked how many casts. I had to laugh, I lost count years ago.

Dave did say that Spokane is where most kids from here go for Shriner's help. We talked about that and I stressed that this is not a regular clubfoot. That Dr. Dobbs in Missouri has experience with this combination.

As Dave was gathering up the papers, he asked if we had passports and stressed that I would need a letter from my husband to take Matthew out of the country. I must have looked puzzled because he said that he felt Shriner's would sponsor Matthew and that an appointment could be as soon at 20 days after approval. I was in shock and forgot to ask how long approval could take but really, doesn't matter, the ball is rolling...fast.

Seems the final hurdle is going to be convincing the Shriner's that Matthew needs to see Dr. Dobbs and not someone in Spokane. Dave feels this is just a formality. That treatment at the closest hospital is always preferred but he also feels that Missouri will be the one.

Just in case, I sent an email to Dr Dobbs letting him know what was going on and that I really wanted Matthew seen by him.

Now we wait.

My morning chuckle

I called Matthew's surgeon's booking office this morning to make an appointment to go in and chat with him, sans kids. Seems like a reasonable request? Right? Chat with the man who has operated on his foot, transfered a tendon, removed part of his heel bone, botoxed him, casted him for the past 6 years...right?

Wrong.

This simple request can not be easily granted. Apparently, because it is not an appointment for Matthew, they are unable to bill this appointment. And because the surgeon doesn't need to see Matthew until June, the booking receptionist didn't think she could make an appointment for him and take up valuable appointment time for another child. I think that was her way of saying nicely 'I know if you book for him now you are trying to get in the back door.'

Insert scratching head here.

So, the way around this is for me to make an appointment with my GP to request a referral appointment with my son's surgeon (of SIX years). Then I can get a referral appointment (I have no idea if I have to have a regular wait time or if I can just make the appointment) to see said surgeon so I can talk to him with out Matthew present.

Insert head shaking here.

And no, his surgeon does not take phone calls over this nor does he answer emails like the American doctors.

So, I now have an appointment next week to see my GP to request a referral to see my son's surgeon so I can chat with him without Matthew present.

Honestly, how can you not laugh over this? I sure have.

I called the Shriners after this amusing phone call. The receptionist said that the person I needed to talk to was out for the day but she would call him on his cell and see what can be done. He called me back moments later and is stopping by my house this afternoon to drop off the application forms.

Wow.

Shriners vs Alberta Health Care? What's your verdict...

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.