What a difference a day makes!

I was so fed up yesterday. The hospital here said I needed someone in St Louis to request Matthew's file. Dr. Dobbs' office said I needed the file and that applications desk needed to request it. The applications desk said his file was not required so they were not going to request it.

So, I tried again here in town. I lucked out and spoke with Holly, who, bless her heart, said if I had all of the required information, she would email select information onwards for me. I asked for the results for Matthew's nerve conduction test and MRI to be sent as well as his complete history from his surgery last January to date. She said it would be sent off today.

So a huge thank you out to Holly who made my day!

What a difference a day can make.

Frustration

I have been trying to get Matthew's medical file to St Louis so Dr Dobbs can take a look before he sees Matthew. Seems like a normal, simple request, right?

Wrong.

I am getting rather frustrated.

First, I called the hospital here requesting his file. I had to leave a message and then wait to be called back. When I was called back, I was given a new number to call, which of course was the wrong number to call. I was given a third number where I again left another message.

That person did get back to me and was the correct person. However I was told that a file would take 7-8 weeks to get to me. What? I said we have an appointment at the end of the month! Oh, that is different. If another hospital needs the information, they can call this number and request the file to be sent. Yay! Finally something solid!

I called St Louis and tried to find a person there that could call here to request the file. Seems that I did not sign a release paper to allow for that kind of transfer of information. What? I was transferred to another department. Seems that Matthew's file in St Louis states that medical information is not needed. What? She said that was unusual but not uncommon.

I emailed Dr Dobbs nurse asking if that was what he wanted. She emailed me back Friday afternoon that I could email or mail his file. Guess it is needed then. I emailed her back asking if she could request it and sent the phone number I had managed to find. Seeing it was Friday afternoon, it was too late for a reply.

So, here I sit, waiting to find out if she can request this information. And watch the calender. We are going to be there in three weeks.

Other news, Matthew spent most of yesterday hopping around on his right foot. He said his left foot hurt to much to walk on. Uh-oh. That can't be good.

Things aren't always as they seem

On the surface, the kids look like they are dealing well with the news of St Louis. That's on the surface.

Yesterday, Ryan came out of his preschool class in tears. His teacher said he had a wonderful day, but as soon as he saw me he cried. He has been begging to go to St Louis with us. He has even tried to give me all the money in his piggy bank to help pay for a flight. He is really unhappy and in tears off and on during the day.

Matthew is angry when he sees me. His teacher says he is great in class, but as soon as he sees me, he is angry. On Wednesday, he was playing with his buddies afterschool when one of his friends came up to his mom (who was chatting with me) and said "Mommy, Matthew said I am not invited to his birthday party" His mom didn't understand and explained to him that Matthew had a birthday a few months ago and that he had been invited to it.

I knew what was up so I talked to Matthew. His buddy had bumped him accidentally and Matthew, being angry lashed out by saying the kid would not be invited to his next party. He apologized to his friend and the friend's mom smiled and said that is fixed.

I told the moms standing there that I was sorry but Matthew was angry and told them all about St Louis. One of the moms (bless her heart) said when I have an address of where we are staying in St Louis, get it to her and she would organize a weekly care package from his friends to be sent. How sweet is that?

I never like to wish away time but gosh, I wish we could jump ahead 3 weeks.

Extra lumps and bumps

As promised, here are some photos of Matthew's extra 'ankles'. They do flatten out a bit when his foot is straighter, but in this position they are rather noticeable and rather hard. They are not callouses. If any one has any experience or idea, I'd love to hear it.






This picture you can see the two bumps. This was taken about an hour after he had removed his AFO. They don't seem to be where his AFO rubs.



Another view. You can see the bump closest to his ankle is big enough to be another ankle and the second one is still little. I suppose that means it is just forming?

And lastly, here is a video of Matthew walking up the stairs without his AFO. He knew I was taping him so he tried to walk straighter. And no, I have not vacuumed my stairs this week. You can see his foot does not function properly.

So far so good...

I started the conversation with Matthew. Ok, so I admit, I didn't tell him everything, but then after all, I truly don't know exactly what will happen. I told him that a doctor far away wants to see him to see if he can make his foot work better.

"will he get rid of my extra ankles?"

Matthew has two lumps that have recently formed and are getting bigger on the top of his foot in line with his ankle and his big toe. I should take a picture and post it, maybe some one has an idea what is happening there. It worries me, but we are seeing "THE doctor" in a few weeks. Trying not to think to much about it.

We talked about how this doctor will look at his foot and could put his foot in a cast. (I couldn't bring myself to tell him it will be a full leg cast yet. I will, just taking baby steps) He was not impressed but for reasons I had not thought of.

"But I don't want anyone is school to see the cast so we have to take it off right away."
"Sorry, but you will have to have it for awhile"
"How long?"
"I really don't know, the doctor can tell us that"
"Ok, but only 7 days, not 28 days, then no one will see it"

Wow. How could he be worried about what other kids will think? He is only 6. How sad. We talked about how other kids probably have had casts before and that his friends could sign it.

Then I told him that the doctor was far away and that we would need to fly there, just Mommy and him. Honestly, I did not see this one coming. He was really upset and said NO! I asked why and he said he did not want to go because Ryan would get into his room while he was gone.

The mind of a 6 year old.

We talked some more about it being an adventure on a plane and staying in a new city. He seemed ok with it so far.

I even mentioned that we may have to go back and stay awhile. He was upset about Ryan staying with Grandma and Grandpa. He said that wasn't fair. Hard to disagree with that one.

I am going to give it a few days before I fill in the rest of the information. Let him get used to this part for now.

Conversations with a 6 year old

We had an amazing conversation while driving to school today.

"Mommy, is there a bone in your tongue?"

"No Matthew, your tongue is all muscle"

"How can it move without a bone?"

"Muscles are what make your bones move"

"So if you can't walk, does that mean you have no muscles?"

"No, it means that something is wrong with the muscles. They are still there but they aren't working properly"

"How do they work?"

How perfect can this conversation be? How timely?

"Your brain is the boss of your body. It sends a message to your muscles to move. That message travels on a road called a nerve. If there is something wrong with the nerve or the road, the message can't get there"

"And then you can't move your muscle?"

"yes Matthew. It is like your foot. The nerve to your foot has some problems so the messages from your brain have a hard time getting there"

It was quiet back in the van. Matthew was thinking.

"So Mommy... that is why I can't wiggle my toes. And that is why I can't move my foot like this."

"yes Matthew. But does it slow you down?"

"No Mommy."

"Ever?"

"Never"

I think he is ready to be told about St Louis. Wish me luck.

FEEDJIT Live

Gosh, I really wish I had the time to play with my blog, make it all pretty like all my friends blogs, find the cool gadgets and widgets (ok, truth be told I don't even know what a widget is) but is seems that when I sit down with some time, I get lost in blog world following white rabbits and before I know it, I am far away and it is past my bedtime.

One gadget (or is it a widget?) that I am enjoying is FEEDJIT Live I am fascinated when I get hits all over the globe. Even more interesting is how they find my blog. Seems that a lot of people out there are searching for blogs that have information on leg casts, full leg casts and serial casting.

I am a half full kinda gal and I imagine those hits are other moms out there who are maybe just finding out that their child is going to be needing this kind of treatment and maybe by having my journal here, they can gather some information and maybe some comfort in knowing that they are not alone in this journey.

Isn't that what all of us bloggers want? Knowing that our lives may be far apart, but intertwined none the less? And knowing we are not alone is the best feeling in the world, blog or otherwise.