Valorie Stone

7/29/08

7/16/08

latest..... happenings

Here are some pictures of our most recent visit to Kansas City- for Valorie's Doctor appointment. She did her regular PFT (Pulmonary Function Test) and well, she has set a new record high for herself. The cool thing is that since her April appointment she has grown (I think they said 2 inches-) but the downside is that she has lost some weight. However her overall health looks good. We want to thank everyone for your prayers for Valorie. If you could just keep us in your continued prayers, as we are needing to keep on our toes with her weight gain. She can get picky and her likes and dislikes will change on a daily basis.
She has another appointment coming up on September 16, 2008 so if you could pray that there is noticable progress in both her weight and height, that would be WONDERFUL!!

THANKS,

7/11/08

6/30/08

An evening at the local carnival

There was an opening to where some friends invited Valorie, Georgia and I to the local carnival here in Vandalia. The girls were both really excited.

This pink ride was not quite as 'bumpy' but not having a place to rest my feet- I wasnt so excited about.

Valorie went on the ride 3 times, on the last time I accompanied her, she was really happy about me riding with her. I have always been scared of these rides- ever since I can remember.

Valorie dragged me along on all the highest rides of the carnival- she particularly liked this ride. After the 5th time it wasn't as scary a ride for me. But she loved it every time. It not only went up in the air but each individual car spun too.

I thought that this picture was cute, as everything else is out of focus, but Valorie's face is in focus.

Georgia went on the smaller rides, and while Valorie found all the highest ones for us to go on next Georgia would stay with our friend - who was also the photographer.

Here Valorie is making sure that her seat belt is attached properly.

This bike belongs to one of the friends that went with us to the carnival. Kids just had to have their pictures on the bike.

Georgia wasnt so fond of this spinning dragons. But she was happy when they stopped.

I know that I shouldn't really be scared of the ferris wheel, but I wasn't as fond of it a Valorie was - as you can tell in most of these high rides. The difficult part of the 'adventure' was that she wanted to go on the rides more then once. It was so nice to see the girls happy.

6/26/08

Valorie today

She slept 4 hours yesterday and when she got up she didn't have a fever, but was VERY HUNGRY. I was happy about that. She ate pizza, chicken noodle soup and a chocolate pudding, then 4 pop cycles. I had to somewhat put the skids on her eating otherwise it would have been an all night activity. I am happy that she is hungry more often.
Here is a picture from just 2 days ago. She was really enjoying the pancakes and strawberries that Tim made on Monday - our Family Day-. Anyway, I wanted to thank you all who prayed for her yesterday. We do appreciate all your prayers for her.

6/25/08

Today

Today, Valorie woke up and wasn't feeling so good. She told me that she was 'cold' so she wrapped up in my big beach towel and laid down. I then felt her head and sure enough she has a fever.
However she still ate her chicken noodle soup. She really likes it a lot. She will ask for it in restaurants and well they don't serve it all year round, so I bought her two big cans yesterday as we were heading back up here to Vandalia for this week. We arrived here last night. If anyone knows of a good recipe for high in calories chicken noodle soup, send it to me.
Valorie has gone back to sleep and it is barely 1pm, so please pray for her. Pray that she will get over this fever and that there won't be any negative repercussions from it. Thanks and we'll keep you informed.

6/19/08

6/10/08

We're back in Vandalia, MO

Here we are, back in Vandalia after 5 months. This is where we come to spend some time away to focus on Valorie and her health care needs. The Grand Vandalia Hotel is a building that is 100 years old and has a lot of antiques. The family that runs the place is really really nice, they have a lot of children. They have adopted children from different countries and even from the US here. Many of them even have some health care need. One particular one is Janai she is 9 and she is originally from China. She had to have heart surgery as an infant. Janai and Valorie are really good friends and get a long real well. (We will need to post picture of them soon) But here we are going to post some pictures of our time here. There's this community pool that we were able to get some passes to and so Kiona, Valorie and I all went. The water was pretty cold though. After the girls swam for a bit we then went to the local 'Pharmacy/Ice Cream/Coffee shop' the girls each got some ice cream. Kiona got, Summer Morning (it was a mix of Vanilla and orange sherbert. Valorie got Rainbow sherbert. They both really enjoyed their snack.

5/29/08

Valorie and little sister -Georgia (and....the older 2)

These pictures were 'inspired' after they saw the 'Around the World in 80 Days', with Jackie Chan. They asked if they could get dressed up and pretend they were the '10 Tigers'. :) It was fun.... Maybe I should go ahead and add Olivia and Kiona's dress up too. :)

5/21/08

To Kansas City Hospital and 'Back Again'.

Well, we just visited Kansas City today (Valorie, Georgia and I -Maya) for a doctor visit. (although these particular pictures are from other visits) She has had this particular cough that we think she got during the fluctuating weather that we have been experiencing over these last weeks. On Friday (16th) we had increased Valories' treatments from 2 times a day to then 3 times, however that didn't seem to change anything. The good part to all of this is that her lungs have remained 'clear'. The nurse and doctor both agreed that they didn't hear any crackling in her lungs which they said most likely means that the treatments she is having done on a daily basis is keeping the mucus from attaching to the lung walls. - Of course we would like to make sure that Jesus gets the Glory in this most of all. Although we are thankful for the medications that she is able to benefit from. We would like to ask you all to please pray for Valorie and her complete healing and strength.

To give you an idea of what she has to go through I will include here:
Morning treatment (approx 1 hour after breakfast)
#1 Albuterol (Mask)
#2 Tobramycin (Mask)This is a antibiotic that 'disinfects the lungs'.
#3 Pulmozyme (Mask) This is a medication that helps the mucus -which is normally very thick for Cystic Fibrosis patients- to be easier to pass.(liquefy)

During these 3 masks treatments she also does her vest treatments (simultaneously).
11 Hz for 20 minutes
13 Hz for 20 minutes
16 Hz for 20 minutes
That concludes her first treatment of the day

Afternoon treatment (approx 2-4pm)
#1 Albuterol (Mask)
#2 Hypertonic Saline (Mask) This is one of the more natural medications. It mainly consists of more salt- this medication causes her to cough up the mucus more-
During these 3 masks treatments she also does her vest treatments (simultaneously).
11 Hz for 20 minutes
13 Hz for 20 minutes
16 Hz for 20 minutes
That concludes her second treatment of the day

Evening treatment(Approx. 8pm)
#1 Albuterol (Mask)
#2 Tobramycin (Mask)
The vest is also done at this time (as mentioned above)
11 Hz for 20 minutes
13 Hz for 20 minutes
16 Hz for 20 minutes
That concludes her third treatment of the day

But then during our visit today it was said that she (Valorie) should have a Mask Treatment of Pulmozyme (which doesn't include any 'shaking' as Valorie calls it- of the vest) right around 10pm so that she can have the treatment in her lungs as long as possible during the night hours.

This picture is when we went to Kansas City Children's Mercy on to sing Christmas Carols on December 18 (which happened to fall on Valories birthday). There have been several people say how much they liked it when we sang for them.