Valorie's update

I will have to start off with saying 'Sorry', I had meant to write everyone the night we got home from Kansas City, but it was quite late when we got home. We do appreciate all of your prayers for her on that day, as we sure felt them. *(now that I am writing this post' please excuse any typos' as I haven't had the chance to proof read and make sure I don't have any misprints).

Valorie went for her appointment and was there on time on July 1st, 2009. The first thing we found out was that she had grown 1 whole inch from her appointment from 3 months ago. YEAH that was really cool.!!! The reason that her growing is such a cool thing, is that she has been having a very slow growth rate since birth. She is the size of a 4 year old and she is nearly 9 years old. We have a plan to have her sleep a lot these next months and give her many high calorie foods these upcoming months so that when she goes in another 2 months she will have made more progress.



The next thing we had done,was we made several gift sets of Videos and CDS for families and children of Children Mercy Hospital and the Ronald McDonald Houses of Kansas City.



During our visit with Dr. Black and his team it was really cool, as although Valorie may have a little cough at this point, she is making tremendous progress with her life overall. She has a slight 'crackle' in her lower left lung- but the doctors had to 'really listen' in order to hear that.


We had asked about giving a few gift sets of Cherub Wing videos and Music CD's to the kids of CMH (I had asked Janet- the Social worker-) and she told me that during the time of our visit there were actually 4 sets of families who had kids being admitted on that very day. I felt so bad, as I know how that feel is.


Giving love to those who are experiencing difficulty in their children's health is something we feel good about doing, as we know that although Valorie may be doing well right now, there could come a time that she is admitted to the hospital again.
Do keep her in your prayers though. Keep Tim and I in your prayers too as her caretakers- as it is a continual job-. Thanks and God Bless you all. Good night, we will be in touch.

Valorie is having her routine check up

(This picture was taken a few weeks ago at the Sequoia National park)

Today, July 1st some of us are taking Valorie to Kansas City -Children's Mercy Hospital-. She has an appointment with Dr. Black, it is her every three month visit that she has. She has been doing spectacular and each time she goes she breaks her own record from the visit before. We are super thankful for your prayers and concern for Valorie. We know that it is because of your prayers that she is doing so well. Please do keep her in your daily prayers.

Healthy lung and air passage
Good weight gain and growth (height)
Protection from colds and coughs


Thank you, and we will let you know how it all went when we get back.

.....MANY many THANKS!!!!

We wanted to send a HUGE THANK YOU to each of you for your prayers and concerns for Valorie's health. It all started the middle of last month when Valorie got a cold/sore throat and bad cough. We had contacted her 2 doctors and it was suggested that we should increase her daily breathing treatments.

With the attention we have been giving her in the way of extra treatments and even more focused attention, along with daily prayers we have seen noticeable progress in her health and strength. Thank you for your help in that area. Just yesterday we had Valorie checked by a local doctor just to see how her lungs are doing, and we are happy to announce that they are clear with no 'rattling'. Remembering the extra medications and treatments has been a little difficult, but now we are thankful that Valorie is better from this cold she had.

Update on Valorie's Health

Here is Valorie doing here treatments before going to sleep.


Her latest update was given Wednesday when she went to see her pediatrician, apparently Valorie is on the border of having Bronchitis. We started her extra treatments a whole week ago (last Friday), but this information is all new. She has a little crackle in her right lung. This is a basic rundown on what treatments she is taking now.

She will have 1 and a 1/2 a day of doing her vest along with 4 nebulizer/breathing treatments (Albuterol, Hypertonic Saline, Pulmozyme and then Tobramycine)

Then in the evening before she falls asleep she gets another set of breathing treatments. Albuterol, Pulmozyme and Tobramycine. Her pediatrician gave her a 2 weeks dose of antibiotics to take.

We have preferred not to fill her with medications (unless it is absolutely necessary) but she doesn't seem to show signs of getting better with just the increased breathing treatments, so we are going to give her these medications. Please pray though that this will work and clear up this cough.

We are praying for really good health as we have planned to take a trip with our kids before the summer gets too hot. We haven't had a 'fun trip/vacation' with our kids now for these last 3 years- since moving here to Missouri. We had to always stick close to home and a place where Valorie could have medical attention. This August will be 3 years since she had been admitted to the hospital, so we felt this would be a perfect time to take the kids to Yosemite Park for a camping excursion. However we desperately need Valorie to be able to 'kick this cold out the door'. Please pray for that.

Please pray for Valorie- she has a cold-

Valorie has gotten a cold over these last 2 days. She started with a sore throat and then a clogged nose. To those who don't know... if Valorie gets a common cold (to just about anyone it could be fine and they could fight it relatively easy)she could have complications that could bring on pneumonia.
We have been doing her increased breathing treatments- which include Albuterol,
then Hypertonic Saline, Pulmozyme then Tobi in the morning with her first vest treatment. During which she does her math games online (with Georgia watching her play, telling me every other minute, "I'm bored, can I play now?")

Before Valorie goes to sleep we have an additional dose of Pulmozyme and then Tobi mask treatment. Today (April 18) she ended up doing 4 sinus rinses as she had such a clogged up nose. She has gotten to the point to where she can do it on her own (with parent supervision).

We are asking anyone who reads this to please pray for Valorie to get better and not have any complications with this cold. If she needs to see a doctor we will do so on Monday, however it hasn't gotten that bad. Thanks for your prayers for her and our continued strength in working with her. God Bless you!
Tim and Maya

here is valorie and georgie in boats

These are some pictures of birds in the snow.

"Clear bill of health"- for Valorie

Tuesday- March 24th Valorie, Georgia and I (Maya) went to Kansas City, MO. Childrens' Hospital. Our 3.5 hour trip went well, and we got to her appointment with 15 minutes to spare. First of all she got weighed and she has gained 1.30 lbs over these last 3 months, then she has also grown 1 inch. Which is really good for her. Her lungs are clear. Marci- one of the Respirtory therapest was happy to announce that Valorie has set a ' New personal record' in her PFT's. She went to Radiology to take x-rays of her lungs and then on to the Labratory. I was a bit surprised that she actually was screeming at the nurse- She was so paranoid of the idea of the needle in her arm. SHe did calm down however when she was promised 'gummy bears' as a prize. I am really releaved that all went well. Valorie was quite the trooper and little 'copycat' Georgia followed suit.


Eating in the cafeteria is the 'high light' of the visit. It's amazing how every 3 months its all the same... Here Valorie is showing one of the stickers she got as a prize.

Sedric, our pet is leaving

Sedric our pet is leaving :(

(Comment written by Maya) Sedric is leaving us tomorrow to be with his new owners in Dallas. I don't really know how to express myself in this, as it has always been the 'plan' that we find his a new home. However at 13 months old and he was still with us, I considered him 'my son' . I know that he is just a dog/pet, yet he is the most adorable lovable one. I for on am really going to miss him. HE is calm, gentle and gorgeous! Being the emotional person that I am, I have found myself really sad today, but I know that this new family is going to be the best for him. Aimee has, lost a golden retriever to kidney failure- not too long ago-. So she has been looking for an older dog. She called him "the perfect example of how a golden retriever should be". Sedric will have a good life and even better then we could give him. He already has a brand new kennel, toys and a family to pamper him. I don't know why I am so attached to this dog, but I am. As a child I only remember 2 dogs in my life, Daniella- who I had for about 2 weeks, when I was 8 in Chile, then something happened to her and she got sick or something so my mom had to take her back. Then in Japan- I was 10/11 we had Miriam- she was a rascally mutt that always got into running off. We finally found her a new home. Then we had Tanzy,




a Boston Terrier- and my mom ended up keeping her for a while. Then Sheba was my kids Christmas gift from the grandparents (Wells), Christmas 2007 - Sheba- who was then delivered of 9 puppies on January 18,2008. We had found new homes for all of the puppies pretty rapidly. Yet, Sedric was always our 'favorite', so we kind of 'held him back', but now he is going.:(

Lots of Snow for early 2009 -January 28-

Here, Valorie was just having the best of times. She was chasing Sedric as he was 'sleighing the kids around on the boogie boards.
Here, I got the kids to stop their snow ball fight long enough in order to take this picture.
I know she looks cold, but can you see the snowball in her hand? She just had a big snowball thrown and her and here she is about to throw one back.
See all the snow flakes?

Here, the kids enjoyed most of the day in the snow. First thing today 10:30-12pm they had snow fights with the boys (pictures of that will be posted tomorrow). Then in the afternoon they went back outside after they changed to dry clothes and Valorie had had her treatments 3:15- 5:15pm. They had such fun. Sedric even got to join in. He had such fun running around, chasing the popped basket ball that Valorie had started to play with.
Here you see where Valorie was making her 'snow angel' and she even got Georgia into making one too.

Here, you see Sedric 'trying to interfere' with Valorie's snow angel designs. I haven't ever seen a dog that liked a kid as much as Sedric loves Valorie and obeys Georgia's every command to 'sit'.

' Sedric in action' trying to get the 'popped basket ball' from Valorie, although she is trying to keep it from him. It is so cute to see kids play with dogs/animals..