A Fun Day

Decided to check out the City Museum today. All I can say is WOW and I am tired! What an amazing place. If you are ever in St. Louis I would recommend this place. Be for warned, bring comforable clothes and knee pads. I crawled through some rather tight spaces under floors, through tubes on the ceiling and other places I have no idea where I was.

What a blast!

Just My Luck

The CDC has raised the level of this swine flu from phase 4 to phase 5. It has never been this high before, not even with the SARS breakout a few years back. I am sitting here with limited information about international travel should the CDC raise it to level 6. Am beginning to suspect it will go that high... and am starting to wonder if crossing the USA/Canada border will be very difficult having a child that had recently been in a hospital for surgery.

If anyone has any information, I would appreciate it.

Home Sick And CAst Change DAy

I think I can say with confidence that Matthew is home sick. For the past two days he is upset over nothing and in tears over and over again.

Today was cast change day. With Matthew feeling home sick it was a tough day. Usually cast changes don't bother him, but today, he cried over everything.

Dr Dobbs is still pleased with how his foot is looking. It is still not at 90 degrees but is turned out well. Next week will only be a tenotomy, no tendon transfer. He feels his foot should do well with only the current tendon transfer, but again, it is hard to tell what the future holds.

He was fitted for his AFO. He will be going into an articulated (jointed) AFO. He feels that with p/t, his foot should do well with this type of AFO.

We have just over a week left before we go home. I think it will be a hard one for Matthew that ends with surgery. Not going to be an easy week.

Surprise, A Night Out!

Yesterday after a long dull afternoon playing Chutes and Ladders and about our 345th game of Go Fish we went to the kitchen for a snack. Just then, one of the ladies walked by and asked if we wanted the two free tickets to the Cardinals game that evening.

Yay!!! Ronald McDonald House is such a wonderful organization and so many people donate their time, money and other items such as tickets to them. It sure is appreciated when you are in a city so far from home with no one but a 6 yr old to keep you company. MAny many thanks to the person who donated the tickets.

We had to go to another location to get the tickets and then drive down to the stadium downtown. We got lucky with parking about 2 1/2 blocks from the stadium and got there shortly after the game started. I had never been to a baseball game before. WHen I was a kid I was a huge Blue Jays fan so I know very little about the national league but it was a blast. I had a beer and enjoyed the game. Matthew got cotton candy and a pop and enjoyed his cotton candy and his pop. I think he enjoyed the game too. What a great evening.

It sure was nice to be out in the evening rather then in the room by 8 pm. Gosh, when I get home, I am going to need to get out!

It's The Little Things

I was really considering asking for a new room. At least 3 families went home on Monday, there were a lot of rooms empty for a bit. I saw some to. NIce and roomy, 2 beds, a chair... oh heaven!

Not sure if I described our room well. It is tiny. Not very wide (I can lay on the floor and with my hands above my head, I can touch both sides with my feet and hands) but long. There is a full bed pushed up against the large low window. Luckily they have made it so the window only opens a few inches, otherwise some one could literally roll out of bed and out the window. The bed has a plasic sheet on it making it sweaty for sleeping.

The only other furniture is a small bedside table with a drawer that is down past the foot of the bed. No room beside the bed.

We have a very small closet with a small rod to hang a few items (no hangers) and enough pins for 3 shelves.

Not bad, but we are here for another two weeks. TIght. And when Matthew goes to bed, I am stuck sitting on the floor or the bed while he sleeps.

I was going to ask for a new room, then I over heard some other people talking about how hot their rooms are. Luckily, this room is the only room in this house that does not get sun, ever. In fact, with the window open, our room can get quite cold, even though we hear the air conditioner running.

I decided to try and spruce up this room for us. We headed off to Dollar Tree. I got 6 hangers for a dollar. I bought a cloth bag for Matthew's crafts and coloring stuff. Then we went to WalMart and I got two pillows and pillowcases for $10.

CAme back to the house, stripped the bed and washed all the sheets and blankets, we had been sweating so bad on the plastic mattress cover. REmade the bed with a blanket on first, then the sheet (only flat sheets). Added the new pillows (the old ones have a plastic cover as well) then went to work on the closet.

Stole the pins from the current shelves and using three pins for each shelf, was able to add more shelves for our clothes. THey are a bit wobbly, but functional. I hung up our jackets and sweatshirts and put all the crafts in the cloth bag and hung that up too.

The room looks so much neater and we both slept so well last night! No sweating and no waking up at all! I feel great and I think Matthew does too. It amazes me how little things can make all the difference. This room is perfect.

Cast change day

Matthew had his cast change this morning. Nothing stellar to report. His talus is still noticeable and Dr Dobbs admitted that it may always be prominant. I also asked if he was most likely going to have the tenotomy seeing his foot was not and still is not in nuetral. He said yes.

His foot is turning out nicely though, just needs to move upwards now.

Matthew decided earlier this week he was going to have a pink cast. When we got to the hospital he decided orange. They only had 4 inch and not a lot so they added a white stripe to it. He LOVES it.

His buddy is going to be at Haven HOuse later today so we are going to head that way for a visit this afternoon.

Getting My Groove On or Getting My Head Outa My Butt

Things are going much better here. I finally got my head outa my butt and looked around to see a great place here. This is a place set up for families of very very sick children. We are so very fortunate. We have met a little girl undergoing chemo and a 14 yr old boy waiting for a new heart for the second time in his life. It sure has opened up a new door of questions from Matthew. When I explained heart transplant to Matthew, I said we should pray that boy gets a new heart very soon. Matthew told me we couldn't, that would be asking God for some one else to die. Gosh, some conversations are hard.

We have started venturing out. The weather has gotten warmer. We hit the zoo yesterday. It is free here so we will be heading back there soon and often.

Matthew has been collecting 'nature' on his walks outside. Then, he sets up his 'free store' for all the volunteer ladies to choose a flower or a stone or a wood chip. He is quickly becoming rather popular around here. He has even been asked to present some candies to the volunteers at their annual volunteer dinner next week.

Someone popped a littlest petshop toy in our mailbox without a note. He's got them all eating out of his hands.

Had a bad day yesterday but feeling better now

I had a bad day yesterday. Gosh, looking back on it I was messed up. A good night's sleep and the sun shining in has turned it all around. I can't have those kind of days, Matthew needs me to be strong.

It started with waking up in the wee hours feeling very ill. Ended up vomitting for most of the night. Luckily, Matthew was content Tuesday morning to cuddle on the bed and watch a movie. It was about all I could manage until we got a knock on the door at 11:30. There was a room at Ronald McDonald house, we were to move over.

I managed to shower and pack up. Then I had to do something about our rental car. It had no heat and it has been cold here. Went to the front desk with our bags and tried to figure out where I could exchange the car. Going back to the airport sounded like it was a hassle (at least that is what the lady at the front desk told me) so I called numerous other locations to see if I could get a different car. After about an hour (would have been faster to go back to the airport by that point) I found a place close to the Ronald McDonald house. Got some directions and off we went. I was feeling icky and dizzy, but we had to go.

Made it to the car rental place feeling awful. Got a new car, got my stuff moved over. Drove out and found RMH. That was when I noticed I had only 1/2 a tank of gas. Crap. Grrrrrr. Also started to realize the stink... someone had recently smoked in the car. Grrrrr.

Got checked in to RMH. There was a lot to take in and my poor brain was barely functioning. Got a bit of a tour. Was a bit sad. Only about 3 games. Only a handful of puzzles. Saw our room. Felt really depressed. Tiny room that holds a full bed barely. A tiny closet that barely holds our clothes and does not fit our suitcase. No chair either to allow me to sit and read after Matthew goes to bed.

Had to run out to get some milk and juice. RMH supplies dinner but not breakfast. Took a long time to get directions to a grocery store. Did that.

Went to make the bed. We were given the wrong sheets. The only person working was new and had no idea how to find new sheets.

Went to give Matthew a shower. Managed to soak myself and get his cast wet.

I was still holding it together when I got a call from home. Talking with Ryan finished me. He sobbed and sobbed. So did I. Then Matthew did too.

Gosh. I was finished. Finally got Matthew to sleep and the phone rang. The front desk was checking what room I was in. Woke Matthew.

But after all that, I was able to sleep. Thankfully I brought a sound machine, the couple next door chatted til after 11 pm. I did sleep and so did Matthew.

Got up this morning, my tum feels better, not 100%, but better. And the best thing, the sun is shining. Life seems easier with sleep and the sun.

Cast change day

Matthew had his cast change today. He picked purple this time. I talked to Dr Dobbs as well. He feels Matthew's foot is looser then when we started. Yay! He is still unsure of when we would be able to go home but said that if he needs the tenotomy, it will happen May 4th. We could go home the next day. We would need to return about 3 weeks later for cast removal and AFO fitting.

This time his foot has been casted closer to 90 degrees. Honestly, not sure if it is, I haven't had a chance to look closely at it yet. Maybe tonight. It has been pulled way over though. To the point where walking on it now is harder. That is a good thing. His talus is still sticking out, but not as badly. Now he looks like he has one extra ankle rather then two. Dobbs was pleased with the look of it.

I also had a nurse take a look at his finger for stitch removal. She wasn't sure about it so they had a pediatric hand specialist take a peak. They also did x-rays again. After a soak, it looked a lot better. The verdict that it is healing well. The stitch was taken out. Of course it bled and Matthew cried, it hurt pulling that stitch out of the nail. Now we have some really cool blue gauze/tape to use to cover it. It won't stick to the owie.

And Matthew's best news, his buddy is staying here at Haven House overnight. They fly back tomorrow, but are back next week for another cast change. They are currently being very silly and driving us bananas. It is wonderful. :)

Happy Easter from St Louis

We arrived at Haven House with no hassles. Yay! Matthew was met at the door with an Easter basket and a new stuffie. He was so happy to see chocolate, I didn't let him eat his Easter chocolate at home because of the diarrhea.

It was hard to leave Ryan this time. He came to the airport to say good-bye and cried quite a bit. Made me tear up to see both the boys crying. Sometimes doing the right thing can be so hard.

We are in the computer room waiting for an Easter Egg hunt that is supposed to start in 30 min. I love this place. They really know how to help kids feel better about being away from home.

Will update after Matthew's cast change tomorrow. He said he is going for a green one this time.

Where there's a will, there's a way

It has been a tough few days here. Matthew's finger injury has proved to be quite troublesome when it comes to moving in crutches and showering with a full leg cast. The antibiotics have made his tummy icky and given him massive diarrhea, again difficult with your right hand wrapped up and your left leg in a full cast. But we have managed. He only needs one more dose of antibiotics. Crossing my fingers things will get better before our flight tomorrow morning.

This is how we have been showering. No easy feat, but we managed. Notice the glue marks where the heart monitor leads were attached for his minor surgery Monday night. I am still picking it off... they must use crazy glue.

Easter came a little early here. We decorated eggs and the boys got very inventive with colors.


I cooked a large turkey with all the trimmings Thursday evening. Now I don't have to cook before we leave tomorrow thanks to yummy left overs.

Easter bunny arrived Friday morning. The boys got very lucky. It seems that the daddy Easter bunny found some skateboards on sale. Of course, both boys had to get on them and try.





WARNING YUCKY PHOTO TO FOLLOW

And the worst part of the day. I had to change the bandages on Matthew's finger. It had bled a lot and the gauze was almost fused to the scabbing. It took an hour of soaking, pulling, trimming, soaking and pulling to remove the gauze. It looks pretty good I have to say. I added polysporin and bandaged it back up.



We are almost packed up. Just a few more things to do. I am finding it tough to pack. Not sure how long we will be there. Not sure when we will make the move over to Ronald McDonald house. Not sure what the facilities are like. Not sure what I need to bring. Guess it will all work out.

Will update when I get a chance.

Tummy Gurgles

Poor Matthew. This antibiotic he is on has given him brutal diarrhea. I have him drinking some Gatorade, but need to call the pharmacist and see if there is anything that can be done. He has today, Friday and Saturday left of this prescription.

Any thoughts on what I can do to help him?

Inspiration

Have you seen the cover of the latest Good Housekeeping magazine?



Absolutely and whole heartedly agree with Michael J. Fox's quote.

"Happiness is a decision."

Nuff said.

On a side note, my poor Matthew. He is in a full left leg cast, bandaged right hand from his minor surgery, and now, because of the massive doses of antibiotics (I think he is getting massive doses so we can finish before we leave on Sunday seeing the stuff needs to be refrigerated) he now has diarrhea. And we had just mastered balancing on the toilet with that cast. Poor kid, hasn't even complained.

My silver fork

Why is it, when you think things are under control, something flies at you out of left field? I personally attribute it to my silver fork.

You see, some people are born with a silver spoon. Not me. I was born with a silver fork. In many ways it is like a silver spoon. I have a wonderful life, I have a great husband, two fantastic and healthy kids. I have a house, my husband has a good job so I can stay at home with my kids. That has silver spoon written all over it. But it is not a silver spoon. We do struggle for things. We seem to have a few extra challenges that most people don't go through but it seems we always land on our feet. That is the silver fork. The tines of the fork poke me and remind me constantly not to sit back and take things for granted.

Which leads to yesterday.

Matthew had school in the afternoon yesterday because they had a special guest speaker. I arrived at 3:30 with Ryan to pick him up and was met outside the building by his teacher. There had been an accident and Matthew's finger had been crushed by a block. I needed to take him in somewhere to take a look at it, it bled a lot.

I went inside and Matthew's finger was bandaged up and he was sobbing. I thought, I'll take him to a walk in to check it then we'll head home. Picked him up (he can't use crutches with an owie on his finger) and popped him in the van.

We got lucky at the walk in clinic. It was really busy, but because of Matthew crying and my having to carry him because of his cast, I think the nurse felt bad for us. We were back in an exam room within minutes.

The doctor came in and removed the bandages. Honestly, I thought the teacher had over reacted, until I saw his finger. Yuck. It was still bleeding and the nail was pulled half way out of the nail bed. The end of the nail bed that should be covered up and safe was exposed and at a 90 degree angle to his finger.

After an exam, a consult and the doctors unsure of what to do (after trying to pull his nail back into position with no meds) I suggested that maybe the children's hospital would be a wise choice. They agreed so off we went.

Arrived at the children's and my husband met me there 20 min later to pick up Ryan who was still in tow. Matthew's finger was still bleeding and had almost bled through the second dressing but he was in better spirits. Craig and Ryan headed home at 5:45 and Matthew and I waited. We were in an exam room about 30 min later. The doctor took a look and decided to do X-rays. He agreed, the nail needed to be put back but wanted to give Matthew an IV so he would not feel the freezing or have to watch the procedure. That is where our wait began. It was a busy night, the procedure rooms to give IV's were very busy.

X-rays showed he had a small fracture but nothing but time could heal that.

We finally got to a procedure room about 10:00. They gave him some IV drug that knocked him out. They repositioned the nail. It popped back in nicely. Then they stitched through the nail and attached it to his finger. Gave us a really strong antibiotic and when Matthew was awake enough, we left about midnight.

He slept until 9 this morning and now we need to run out to pick up our prescription. He says his finger hurts a bit but refused pain medication. He is tired, but generally doing very well. He should be back on his crutches in a few days, just in time to go to St Louis. We need the stitches removed in a week... we are in the Shriner's hospital on Monday. I have a feeling some one there could help us out with that. We are home, happy, and back on track. Things could be far, far worse.

So all in all, it may have been a difficult day, but thanks to my silver fork, things are all in perspective again. I am one lucky mom.

What can you do in a full leg cast?

This is what I want the boys to do



This is what they decided to do while I was busy with laundry.




So the answer to What can you do in a full leg cast?

Anything you can think of.

Crazy

Things are just crazy right now. I am trying to get everything organized so we can be gone for 4+ weeks. Spending some time answering emails, trying to find out how long I need to be there, getting flights, accommodations, things for Matthew to do and keep busy, Easter, seeing friends one last time before we go, birthday parties, birthday gifts for my niece who turns 3 while we are gone, canceling appointments while we are gone, trying to shut down my home business for the interim, transferring email addresses so I can access stuff, not to mention getting enough cuddles in with Ryan who will miss us terribly.

Yuck, not liking this, and I only have 10 days left.

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.