~How TWO trips became...who knows? ~ It's a TRIP! and an upgrade.... 4/22

[Pollito916]

Poor Lauren and William! They are in my prayers!

 

[Sandy321]

continued prayers! Thanks for the update...

 

[tinytreasures]

prayers sent

 

[maroo]

I spoke too soon. Must be something about night time...

Lauren has spiked another fever, despite Tylenol.

We are pushing fluids and soup to try to keep her out of the hospital. They are trying to avoid that so she doesn't end up with some hospital infection.

She actually tried to do homework tonight, which lasted about 5 minutes (she was laying down and dictating answers). She is so sick.

William is much better - hopefully will be going to school tomorrow!

I will be back at work, too. Pray for a quiet night around here.

 

[jenb1023]

How did the night go?

 

[eyor44]

Poor Lauren Praying the fever subsides soon. Yes, there does seem to be a connection with fevers and nighttime. This is when my kids (and I) are always the sickest.

Glad William is better.

 

[tinytreasures]

hope she is better today
so glad William got over it

 

[maroo]

Lauren update: Yesterday afternoon she announced that she feels "fine"... .... as long as she is lying down. "But Momma....I feel FINE!"

She told her Mom that she feels fine now and should go back to school. Her Mom told her that she has to be sitting up in her wheelchair and able to get around before she can go back to school.

I slipped and told her she has to be able to "walk" around... She thought that was funny and said she would have to stay home FOREVER! Oh, gee...you know what I mean! (We use walk and roll interchangeably around there!)

Evidently there is a huge Pep Rally at school tomorrow (televised - biggest game in the state tonight) that is even going to be on ESPN? Who knows. But Lauren definitely wanted to go to school today.

But...she is obviously staying home. At least it is a "short day" and she should not miss a lot of important work...considering the biggest game of the year (except the State Championship) is tonight.

She has already missed so much school this year that she won't be exempt from exams...but we told her not to worry about it...she excels in school and will be fine to take an exam for her classes.

But...she does appear to be better. I will be convinced when she is able to "get up" and "stay up" all day without being worn out. But this is a great improvement!

I am so thankful that William got it first and gave us a little time to get Lauren on Tamiflu before she even got really sick. Thankful that the doctor "broke the rules" in his wisdom and gave her the medicine "prophalactically" (sometimes a doctor that actually knows you should make the decisions regardless of the guidance from the CDC!)... Because I believe we have certainly avoided her getting seriously ill!

Her O2 sats are great and she is doing well!

 

[Matt1026]

YEAHGood News to hear. I am glad to hear that she is doing well. I have been worried about her and glad to hear that she is doing better.

 

[eyor44]

Glad to hear that Lauren is doing better.

 

[tinytreasures]

crying happy tears right now
I am so glad she is better and wants to go to school that is a great sign (even if she is not ready yet

 

[Sandy321]

for continued healing!

Also Maroo - I answered your Marathon Training on my thread!!

5 miles may seem like a lot - but you are in good company - go for the company!! and know i'll be with you in spirit!

 

[Pollito916]

Great news!! Too bad Lauren had to miss the big game, but being healthy is more important!

 

[TarzansKat]

Glad to hear health is improving!!!

 

[If U Had Wings]

Glad to hear that Lauren's feeling better.

 

[maroo]

Hey guys!

Lauren went back to school today. But she was in tears.

We have another problem and I think it has just become clear to Lauren and her Mom today. Which has made this a very difficult day.

For months I have noticed Lauren's neck curving. One day we were all swimming and I held her straight up and her neck looked like it was going 40 degrees to the side! She has been to the doctor and they mentioned surgery in passing...but it was not something her Mom even let sink in. She just told me they said that today.

When I went to Disney a couple of weeks ago...then got the flu...it was almost 2 whole weeks before I really saw Lauren.

And I can tell you exactly what she was wearing when I finally saw her...because she took my breath away. Her neck. It looks really, really bad. She looks like she is leaning over and she is not.

It was hard for me to hide my shock. Lisa actually saw my face and wanted to know what was wrong with me, but I brushed it off. I finally told her later that I was concerned about Lauren's neck. That I could tell a change in just two weeks. It is SOOOOO crooked!

Lauren has been in tears saying that she is so tired - and we chalked it up to the flu - and her Mom finally asked her if her neck was bothering her and Lauren cried...evidently Lauren is so tired because she is having trouble holding her head up. I don't even think Lauren realized it, honestly...until her Mom mentioned it.

My gut tells me that something will need to be done. I think they are going to try some sort of PT? But her insurance company has long ago stopped paying for PT - and her Mom was tired of fighting with them - so it may be OOP? Other option is surgery on her neck. I have no idea what that entails?

Anyway...

On another note...

What is the big deal about the 4/3 deal????

I thought it was this huge savings? And it is no more than doing an AP discounted room? You get a whooping $7.00 discount on tickets?

I actually looked into extending our December trip by a night to get one "free" and it just didn't make any sense...

Am I missing something here??

 

[maroo]

gosh...

I just read back over my post and I am so transparent...

It is so easy to tell that I am blah today...I have no excited emoticons everywhere?

 

[kdzbear]

Maroo,

Tell Lauren and her mom to hang in there. It may be since it is a new condition that insurance might cover it. Tell her to keep fighting. Tyler had torticollis, which is similar. His neck curved far to the right. He was able to meet with a special care doctor and in addition to the physical therapy he received a Botox injection. This injection deadened the muscles and tendons in the exact area where the problem was for a three month period. During this period he received physical therapy twice a week and the therapists were able to stretch his neck farther due to the deadened muscles. After the three months the muscles grow back to normal, but due to the therapy there is more range of motion. I know that Lauren has some other issues going on too, but this might work. We had to just keep pushing and pushing until we got the right specialist. The cranial/facial doctor wanted to do the surgery right away and he could not believe that the Botox and physical therapy fixed it without surgery. We were able to cancel his surgery. There is hope and many prayers out there for Lauren! Keep your chin up!

 

[eyor44]

He was able to meet with a special care doctor and in addition to the physical therapy he received a Botox injection. This injection deadened the muscles and tendons in the exact area where the problem was for a three month period. During this period he received physical therapy twice a week and the therapists were able to stretch his neck farther due to the deadened muscles. After the three months the muscles grow back to normal, but due to the therapy there is more range of motion. I know that Lauren has some other issues going on too, but this might work. We had to just keep pushing and pushing until we got the right specialist. The cranial/facial doctor wanted to do the surgery right away and he could not believe that the Botox and physical therapy fixed it without surgery. We were able to cancel his surgery. There is hope and many prayers out there for Lauren! Keep your chin up!

Poor Lauren
If it isn't one thing it's another.


Maroo
I noticed the new deal also, but don't think it is any better than what we have with the free dining. I think reservations must be really down (good for us with shorter lines) and they are trying different things to get people to come.
My MIL had this same issue with her neck and the Botox injections helped her also. For her it was losing muscle control. Her head leaned so far to the side, she could barely look up.

Will continue to pray for Lauren.

 

[Sandy321]

Lauren and her mom need a patient advocate - Of COURSE the insurance company isnt going to pay for PT - heaven's they (insurance companies) are "in" it to MAKE money - they do EVERYTHING they can NOT to pay out!

What about school? Isnt there one person in that school that can see what this is doing to Lauren? AND will back it up with reccomending PT? You have got to be kidding me - its times like this when I want a "perfect" world....

I pray that God will put someone in your paths that will help Lauren, as she needs His intervention! Hear our prayer....

when the 4/3 deal first appeared, it was not a good deal - but if it puts butts in rooms - then they go forward!

Stay the course Maroo!