Friday, April 17, 2009

One More Surgery....

Just a quick update.  I went to the doctor yesterday.  Things are looking good.  My ankle is finally  healing correctly.  The area where she added in the bone graft is filling in.  The tendons and ligaments are healing.  Overall, it's good news.  The best news is that I can walk!  I have to wear my boot for awhile longer but that's okay with me.  Walking is a beautiful thing.  

I do have to have one more surgery next Friday.  I have a really long screw across the joint in my ankle and she wants to go ahead and take it out.  I'm glad.  I can feel it when I walk and it isn't pleasant.  I will be really happy to have it removed.  I kind of want to ask her if I can have it after she takes it out.  Is that weird?  

I do have quite a bit of pain when I walk.  I'm sure that will just get better over time.  It's bound to be painful after not really walking for the past eight months or so.  I also have some areas of numbness in the top of my foot.  She's hoping those will get better after she removes that screw.  They may not.  I may never have full function in that ankle again.  She said it will very likely always give me problems with pain and weakness.  There go my hopes of winning the Boston Marathon.  :)


Everything To Me!

Tuesday, April 14, 2009

Dancing Machine

Tyler LOVES to dance!  He really gets into it.  Enjoy!



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ABC's & 123's

This is a pretty big file and takes awhile to load.  But, if you can get it to work, it is so worth it!!  Enjoy!


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Family Fun

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Tyler LOVES to slide!

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Thursday, April 9, 2009

Update

I suppose it's high time I updated around here.  It has been awhile.  We are doing alright.  Sometimes I think that we live in the house that germs built.  We've all been sick on and off the past couple of weeks.  Okay, who am I kidding?  We've been sick on and off for the last several months.  Seems like someone starts the cycle and it runs through everyone then we're all well for a few days and someone starts it off again.  That someone always seems to be Emmalee.  I think she is picking up the germies at school and bringing them home with her.  I will be so thankful when it is summer!

Tyler has been doing well.  He is such a strong little man!  He seems to be learning something new all the time.  He is also walking 90% of the time now and I LOVE it!  He is just too funny to watch.  He has many new words and "talks" so much more now.  He is also quite the jokester!  He gets a huge kick out of making us laugh.  

The best news of all is that Tyler got the green light from his doctors to go back to school!  I am excited but also a little nervous.  It is going to be hard to let him go after being so super cautious and protective this past year.  But, he is going to be so happy getting back to school.  We met with the district representative recently and hopefully we'll find out soon if Ty has a spot in pre-k to finish out the school year.  

Emmalee is enjoying pre-school.  It is a really fun program and I am happy that she has had the opportunity to go this year.  We are planning to send her to the same program again in the Fall.  

Emmalee turned four on the 6th.  It is almost impossible for me to believe that at this time next year she will be getting registered for kindergarten.  Where did the time go?  

This past week has been full of parties for Emma.  She had her friend party at Chuck E Cheese on the 4th, her family party at home on the night of her birthday and a little party at school on the 7th.  After she got home from school that day she asked me when the next party was.  She wasn't too thrilled when I let her know that the parties are now finished.  

Nathaniel is a wild man!!  We have decided that trying to hold him is like trying to hold a Tasmanian Devil.  He is so busy and wiggly.  He is constantly on the go and he is never quiet when he's awake.  He crawls 100 miles an hour and cruises the furniture, pulls himself up to "play" the piano and drives Ty & Emma crazy!  (Isn't that what little brothers are for?)  Seeing how far he has come is incredible.  He is truly a miracle boy!  He still has a way to go developmentally but I have no doubt that he will catch up and do well.  

Last week we took all three kids to the eye doctor.  Emmalee had recently developed some issues with eye crossing.  I thought it was just me noticing until her pre-k teacher told me she was noticing it also.  The boys were due for check ups as well so we took everyone.  

Tyler's eyes are improving which is fantastic.  He is still very visually impaired but they are getting better a little at a time.  He still needs to have the lens replacement surgeries but his Oncologist wants to wait until he is further along in his leukemia treatment.

Nathaniel's eyes are still doing well.  He does have some crossing issues but the doctor didn't think that he needs correction at this time.

The real news is that Emmalee had to get glasses.  She is severely farsighted and her prescription was pretty strong.  I was surprised!  I expected that she would need glasses but didn't realize just how bad her vision is.  I am really glad we got her in.  She, of course, chose pink glasses. They are soooo cute on her!!  (I will post pics soon!)

I go back to the doctor next Thursday and I am hoping that she is going to give me the green light on walking.  I am beyond ready!  She said at my last appointment that there is a chance she will have to do one more surgery to remove one of the larger screws that goes across the joint.  I am really hoping she doesn't have to do that but I suppose it isn't the end of the world if she does.  She also said that quite simply, my ankle will never be the same.  I will probably always have pain and weakness.  I may have to wear some sort of brace.  I guess we'll just have to wait and see.

Brent is doing well and keeping busy.  He has had several out of town trips lately.  We sure miss him when he's gone!!  He is still having some health issues and we're working to figure out exactly what is happening.  One thing we did find out is that his vitamin D levels were extremely low.  He is now taking a supplement and starting to feel some improvement.  

I suppose that's enough for now.  :)  I will get busy and post some pictures soon!!

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!!