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.