Tuesday, March 24, 2009

Love it!!

I am so excited!  I recently met another mom with a child with special needs.  She makes amazing, custom overalls for her daughter and other kids with special needs.  For those of you who don't know, Tyler has to wear overalls all the time.  It is necessary so that he doesn't get ahold of his colostomy bag, Mic-E button, medi-port needle when he's accessed, etc.  Overalls make life much easier.  :)

At any rate, Amy made Tyler some amazing overalls!  We haven't received them yet but she emailed me some pictures this morning.  I can't wait to get them!!  

If you happen to have any gently used overalls, boys or girls, any sizes, long pants or short, please let me know.  Amy relys on donations in order to make these.

Thanks again, Amy!!

Wednesday, March 18, 2009

Monday, March 16, 2009

Come What May

My friend Lanna has this posted on her blog.  I just had to add it to mine as well.  What a great message, no matter what your religion.  

Monday, March 9, 2009

No Place Like Home!

We are home!!! The docs came in this morning and said that things look better, the culture did not grow MRSA and since Tyler wasn't running a fever they felt that he was okay to come home. I certainly couldn't argue with that logic and we hightailed it out of there as soon as they gave the word. We were home around noon and we both got in a good nap. I am thrilled to be sleeping in my own bed tonight and Tyler must be also because he snuggled right in. There certainly is no place like home! Our friend Brooklynn also went home today but our other friend Maddy is still there. Please say a little prayer for her. Please keep our friend Anna in your prayers as well.

Sunday, March 8, 2009

Tyler Sunday Update

Not a ton of news to report tonight. Tyler is still doing well. We did find out today that the culture that they took from around his g-tube grew a host of bacteria. They're thinking that it's probably a contaminated sample and they will likely repeat the culture to see if something definite grows. Until then they continue to treat him with the Vanco.

We did get to move to 4-3600 tonight and we are so glad! Everyone on 4-1400 was wonderful but it is nice being back here where everyone knows us. Tyler was thrilled to see "his girls!"

That's pretty much it from here. Two of Tyler's friends are also in this weekend so it's kind of a mini-reunion for the moms. One of these days our children will realize that they don't have to get sick and end up in the hospital in order to see one another. :) Please keep our friends Brooklynn and Maddy in your prayers also as well as our friend Anna who is in Boston right now.

Tyler Saturday Update

Ty is doing well. Actually, he is acting fine. He is his usual giggly self today which is a great thing! The only discomfort he has is when someone is messing with his g-tube. It still looks awful and has lots of drainage. They have him on Vancomyacin for now until they know exactly what kind of infection it is. We haven't heard any results yet. Hopefully we'll know more tomorrow.
We are not in our usual unit this time. All the private rooms on 4-3600 were occupied last night so they put us on 4-1400 which is the adolescent unit. Everyone here is really nice but it isn't the same as being over with our friends. They're hoping to get us moved over soon.

Tyler has been charming everyone over here today. He is such a silly goose! He knows how to keep everyone smiling.

Thanks to everyone for your comments, love and prayers. I'll update tomorrow.

Saturday, March 7, 2009

Hotel Strong

Hello from Hotel Strong. Yes, it's true. Tyler was admitted last night for an infection around his G-Tube. I was really hoping that we'd come to the ER and they would take a look at it and tell us to go on home. No such luck. They are thinking it is probably MRSA again. I'm guessing they are probably right, given his history.
It has been four months since his last stay in the hospital. That was the longest we'd gone since he was diagnosed. I suppose it was only a matter of time. :)

I'll keep you all posted. Please pray that this is a short visit and he will be on the mend and home very soon!!