Tuesday, March 31, 2009

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.

Monday, March 30, 2009

A long day

For the first time ever, I had to drag Matthew out of bed. I woke him up and he said "no, Mommy", rolled over and went back to sleep. Poor kid. Both of us laid awake last night after little sleep the night before and a long day.

We arrived at the hospital at 7:30 am and were called back immediately for forms, wt, ht, x-rays, photos, then into an exam room for more forms.

We were seen by a few nurses before Dr. Dobbs came in. I have to say, what everyone says about him is true. He is a very nice, understanding and knowledgable man.

He asked for Matthew's history then examined his foot. I am too tired to remember how the converstation went so below is what I remember, in no paticular order.

Yes, he is tight and his foot needs to be moved over. Casting and intensive p/t should do that. He may need the tenotomy again, but Dr. Dobbs will wait to see how tight he is after casting. Yes, Matthew is in a full leg cast, red this time. Photos to follow when I return home.

Yes, his extra ankles is the bottom of his talus bone protruding out. There is no new bone being laid down. No damage has been done. After this first cast, it should not be visible any more.

He feels that with this set of casting, possible tenotomy, intensive p/t and a new AFO his foot should hold in position for the long term. Yay!

He is pleased at how much motion his tendon that was transfered has. Yay!

He is willing to work with Matthew's current surgeon if I want. I explained that I may have burned a few bridges there and not sure if we can do that.

He is also willing to work with our p/t and our orthotist.

Even better then this news, Matthew made a friend. His new buddy is 7 and has a right clubfoot that seems to be regressing. They met in the x-ray department and by the time we were having a surgical tour, they were best buddies. They both got casts and are scheduled to be back on the same day for a cast change. I told his mom about haven house. She was very interested, maybe they will stay here together next time. I think this is the first time Matthew has seen another child the same age with the same problem. It was so wonderful to see them together.

So our next few weeks looks like this. This cast stays for 2 weeks. We come back here on Easter Sunday for a cast change Easter Monday. Then we stay for the next 3 weekly cast changes. Dr. Dobbs feels that 4 casts should do it, but that is an estimate. At that point, he may or may not need a tenotomy. If he does, it will mean three weeks in that cast before removal. Then, intensive p/t.

It is 3 pm, we are both tired and hungry. Matthew wants to go back up to the room. It is going to be early dinner then bed for tonight. We have a driver picking us up at 6:15 am for the airport. We have 58 min between flights tomorrow, if we make it we should be home by 1:30 tomorrow. Then I have to arrange everything for our next trip.

Will update with photos when I can.

Sunday, March 29, 2009

We are here in St Louis

What a crazy day. Woke up to a snowstorm. Got to the airport on time but ended up leaving 1 hour and 20 min late because all the planes needed de-icing.

Got to St. Paul/Minn alright, waited 2 1/2 hours, got on the plane and found out the luggage door had fallen off. Got off the plane, waited some more, got on another plane.

We got to Haven House and had a bite to eat, then spent time in the gym playing frisbee, basketball and soccer.

We are both beat and sweaty. Time for a snack, a shower and off to bed.

Matthew is having a tough time being away from his brother. Lot's of tears. Poor guy.

Hope to update sometime tomorrow.

Saturday, March 28, 2009

As ready as I'll ever be...

Our bag is packed, the paper work is all in order. I think we are ready.

We are going to be at the airport tomorrow at 6:20 am for our 8:00 flight. We have a really long layover (over 3 hours) so we don't arrive in St. Louis until 4:30 pm. Matthew's appointment is at 8:30 am on Monday. It is supposed to last for 3-4 hours.

I will update Monday evening if I can from Haven house.

If not, we are supposed to be home Tuesday early afternoon. However, our layover is 57 min. Not sure if we will make that flight. Will have to see.

St. Louis, Dr. Dobbs, here we come!

Friday, March 27, 2009

Crossing my fingers

Ryan started vomiting at 5:30 this morning. It continued every hour until 10:30 am. He seems to be over the worst of it already but has a bit of a headache and is wanting cuddles.

Just hoping that Matthew and I can keep away from what ever he had so we can travel in 2 days. Our flight is less then 48 hours away.

Crossing my fingers.

Thursday, March 26, 2009

Back home, getting ready

We are back from a quick visit to Grandma and Grandpa's house. The boys had a fantastic time swimming every day. Boy, they sure are swimming well now. Matthew is full on swimming, jumping in the deep end, doing front rolls and back rolls underwater. He's just like a little fish. Ryan also started swimming unassisted, just not to far yet. That will come.

We got to take the boys to Tube Town in Siverstar. What a blast! We picked an evening where the weather had dipped to just below freezing and the runs were pure ice. What a ride!

We even got a day of skiing in. My first time on skis in about 10 years.

Now we are home, trying to wash clothes and figure out what we need to take to St Louis. Starting to get nervous.

Thursday, March 19, 2009

Unsettled or How Big Is Your Ego Anyways?

If you have been following along on this crazy train, you will remember that on Friday Feb 13 I tried to get in to see Matthew's surgeon to talk to him about seeing Dr Dobbs.

Guess who called my late yesterday afternoon? Yup, only 4 1/2 weeks after trying to speak with him, he called. Seems he just received the referral letter that I wanted to speak with him about seeing Dr Dobbs. He apologized and gave me a number for his secretary so in the future I can get a hold of him a lot sooner.

That concluded the nice part of the conversation. The next thing he said to me was "What hat did you pull this name out of?" It went downhill fast after that.

To summarize the conversation, basically he feels I am searching for a Ponseti trained doctor for a second opinion and that I have gone 'internet shopping' (his exact words). He feels I should have come to him and he could refer me to a better doctor, either the one that he works with (Ummmm, how is it a second opinion if it is your colleague?) or one in Seattle. That Dobbs is good, but not the best.

That was hard to hear. This is the man that I have trusted with my son's problems for six years. To have a professional tell me that I have not found the best doctor was hard to hear. Maybe I didn't look hard enough, maybe I have jumped into this with my eyes closed, maybe I should just make an appointment and have Matthew seen by his doctor again.

Professionals can yield a lot of power over a desperate mother.

The call did end on a somewhat positive note. He told me that if I did seek a second opinion (No, I didn't say we were going, I didn't get much time to talk and I was in a bit of shock) that I should make sure I send his file. I was able to say that I was not unhappy with his current care, but that I wanted to make sure that there wasn't something else out there that could be done. He did say he understood that I need to be Matthew's advocate and that if I need to talk to give him a call.

Sheesh. Talk about feeling unsettled.

Then I spoke with my husband. Funny, I was unsettled and unsure of what to do after the conversation. My husband on the other hand said the conversation left him feeling more sure about what we were doing then ever before. He said that most likely it was ego talking.

I had to go over in my mind the things I am not happy with here.

1. I have been asking for physio for Matthew since 2007. His surgeon keeps telling me to this day that it is unnecessary.
2. His surgeon explained Matthew's surgery to us but never once mentioned the possibility of bone surgery. He did that without us knowing.
3. He doesn't want to see Matthew until June. He seems to be waiting to do more surgery rather then prevent or prolong it.

And then I checked my email. A mom from the US with a son with neuromuscular clubfoot was asking what shoes/AFO's to go with a brace. Here in Canada, I was not given options so unfortunately I was no help. She emailed her son's doctor (Dr Dobbs) and found out he is in Hawaii on vacation. She thought she would have to wait awhile for a response. She didn't. He emailed her back from his vacation with the answer she was looking for. Amazing.

Thank you, that helped me so much. I do believe that this is a great doctor despite what I heard yesterday.

10 days and counting.

Tuesday, March 17, 2009

5 years ago today...

5 years ago today was a very anxious day. I was in hospital at 36 weeks 6 days and at 8 pm was given a dose of gel for the start of an induction due to IUGR. My body was no where near being ready to have a baby and I was told this would take awhile.

Just to prove them all wrong, Ryan made an appearance 5 hours later, 1 hour past St Patrick's day and 1 hour into his 37th week. He was a just a little small and only had to stay 4 days in the NICU before we could bring him home.
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Ryan's first day home and a special snuggle with Daddy.







He may have started small, but he grew quickly. (6 months)










And his brother loves him.
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Really, he does...
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He is my kind, loving, caring child. A great hugger


the one to make us laugh


And I can't believe my baby is going to be five in a few hours.


Sniff sniff...

Friday, March 13, 2009

Getting off my high horse and the Evolution of Super Heros

Yesterday's post was more of a rant...sorry about that. I really do try to be a half full kinda gal but some days get to me and I see negative things rather then the positives.

So to get my mind back where it needs to be, I want to share a funny.

My boys are all about superheros. Most of the time they are dressed up (or just pretending to be) Spiderman, Batman, Ironman, or hulk.






This is Matthew 12 days post tendon transfer and calcanial osteotomy jumping on the couch spinning webs.










Ryan as his favorite alter ego.










Sometimes Ryan gets his super heros a bit messed up though. We are not sure who this is but maybe he can come and do my kitchen reno...




I am starting to wonder if my poor children need to watch more tv, or at least some new movies. They have their super hero ideas that are a bit, well, off. I caught Matthew running around the house a few weeks ago yelling "I am Ironman! Here is my Iron!"

They have also invented their own super hero alter egos. I heard them talking the other morning.

Matthew "I'm Zacron and my super power is I can run really really fast"

Ryan "I'm Toronto and my super power is I fly"

There was a pause and then

Matthew "And Daddy is Smokeman!" (no idea, no one smokes)

Ryan "and Mommy is Makeman cuz she makes delicious and yucky foods"

And lastly, this one I like to call, when super heros go wrong... (Ryan calls this Robin)


Have a great weekend everyone!

Thursday, March 12, 2009

This is my normal

Do you ever just want to scream at that person "This IS my normal life!" You know the one I mean... that person that either has no children, or has the PERFECT children and they just watched a particularly bad and embarrassing meltdown from your not so perfect child and they are giving you a look like they just saw your child grow a third head?

Maybe I am just tired. Maybe I am just fed up. Maybe I have just had enough. Maybe I need more patience. Maybe I just need a glass of wine. Anyhow, this was my day today.

I picked the kids up from school today and Matthew, managed to pick up a ball in the gym and kick it so it hit himself in the eye. I think that deserves some sort of recognition. I mean, really! What skill to drop a ball, kick it and have it hit your eye directly! There were a few tears but all in all a relatively uneventful owie.

Fast forward an hour and a half to the eye appointments for the boys. The doctor examined Matthew's eye and said there were some abrasions, had he had some recent trauma to his eye?

I explained his ball the to eye incident early in the day.

She said she wanted to take a look at the back of is eye, make sure there was no trauma there so he would need the pupil dilation drops. I agreed. She told Matthew the drops were going to hurt.

Matthew had a massive meltdown. He flew off the chair and came at me, fists flying. He hit me a few times before I could get a hold of him, look him in the eye and talk him down.

That is when she gave me that look. The one where she just saw my child grow a third head and that I was the worst mom in the world. I just wanted to scream "THIS IS MY NORMAL!" I didn't want to explain it again. I didn't want to have her look at me like I was a bad mommy, or worse, that I have a horrid kid.

Instead, I explained to her that this is a kid who sees a lot of doctors and many tell him this will hurt... and it does hurt... a lot. So, when a doctor says to him this will hurt, he gets a lot of pain. He was angry because I had told him he was not going to have any pain at this appointment.

In the end, I was able to calm him down and hold him for the drops. After he got them he said "huh, that didn't hurt"

So this is my plea to all who happen to read this. Please, try not to judge that mom you just saw do something you said you would never do, or a kid who did something you would never allow your child to do. That could be their normal they are struggling through.

Wednesday, March 11, 2009

That can't be good

Just back from physio. I asked Matthew's p/t what the bumps could be. After some manipulation and thought her best guess is that the first bump is the tip of his talus.



She thinks that maybe his foot has rotated enough that the tip of the talus is now protruding outward. She also thinks it is possible that more bone is being laid down on top of the tip.

That can't be good.

18 days and counting...

Loose Ends

Been running around this week trying to tie up all the loose ends before we head off next week to my parents for spring break. Had the kids (and my) hair cut, have eye appointments tomorrow and should make a dentist appointment, I think Ryan chipped a tooth.

Spent the last two days running around trying to get loot bags and party games ready for Ryan's birthday party on Saturday. I can't believe my baby is going to be 5 next week! *sniff sniff*

We have physio today, swimming today and I get to go out with a fantastic group of ladies I get to call my friends tonight for dinner. Yay!

Tomorrow is school, a coffee date for ME with another fantastic lady I get to call my friend. Then it is eye appointments followed by 2 hours at the soccer dome.

I still need to figure out my transportation to and from the airport as well as to the hospital. I need to figure out pants for the kid and shoes and socks with his cast. I need to pack for that trip.

And, we decided to take off next Friday to see my parents for a few days before we go. The boys are so excited to see Grandma and Grandpa. In fact, Ryan is more excited for that then his birthday party.

Busy busy busy...

Tuesday, March 10, 2009

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.

Monday, March 9, 2009

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.

Friday, March 6, 2009

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.

Thursday, March 5, 2009

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.
video

Wednesday, March 4, 2009

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.

Monday, March 2, 2009

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.

Sunday, March 1, 2009

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.