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Thursday, July 30, 2009

Infusions Over?!

We got great news this morning. Kya's aldolase was at 5.5 on Monday! So they are stopping the steroid infusions and we are going to see how she does. We are so excited, scared, relieved, and anything else you can imagine!!! I know that our doctors know what they are doing and I have faith that God is healing her, but the emotions that are in the pit of my stomach need to know what my mind does!
We will go back to see Dr. ONeill on August 10th. She will check her out and they will check her levels to see how well she is doing! As long as she is still doing good they won't do another infusion. (However, if for some reason they think she needs one they will do it that day.) Then we will go to Chicago and see Dr. Pachman on September 21st!
Once again, I can't say how excited we are! I truly believe that we have an excellent team of doctors working with Kya. Dr. O'Neill has been great from the start and having Dr. Pachman to consult when things got a little tough has been fabulous! They have worked so well together and I have not had to mediate between them. It would be great if all doctors would work that well together for the best interest of their patients. Also, I can't forget Dr. Jarvis, he was there on call in the middle of the night when Kya got so sick the week before Easter. He even gave me his cell phone number in case she got worse so I wouldn't have to go through the hospital paging him!
Thank you to all of you who have prayed endlessly! Many of you have sent cards and that means so much! We ask that you continue to pray endlessly that Kya will be healed! Thank you so much for all of your support!
Thanks Again!
Kalee

Tuesday, July 28, 2009

Another Infusion Over

Kya is doing very good. She had another infusion yesterday and she did very well. She didn't get sick at all and she seemed to still be pretty strong before the infusion. I am praying that her levels will all be well in the normal range and that they decide that she doesn't need any more. But, I want what is best for her so if she needs more we will take more! She is so good about taking her daily meds that I shouldn't gripe about the infusion battle every now and then.
Today she is staying with Grandma Trish and Kaysa. She was very excited last night about helping to paint a cabinet today. I am not sure this is a good project, but grandma can handle it!
Also, Kya is very excited to get to start going to Sunday School this Sunday. She will be promoted out of the nursery and into Grandma Trish's Sunday School class. So, we decided that mom will make sure no one is there sick and then call me so I can bring Kya to Sunday School. That way she is getting to go while still being cautious!
Please continue to pray for Kya that her levels will remain level and that her disease is going into remission. We are praying that we will be able to stop the infusions and that she will slowly begin to have tapering of her medicines! Thank you again for your many prayers and support!
Kalee

Friday, July 24, 2009

Change in Infusion Dates

They called from OKC today and I have to go Monday to get my infusion instead of Tuesday. So please pray for me and for Sabrina. (she is filling in for Mavia and I yell at her a lot while she is accessing and pulling my blood!) Grandma Trish, mommy, and Kaysa are going to go with me to get my infusion this time. I pray that my blood results all come back good so this might could be my last infusion! (But, I am not going to hold my breath.) God is in control and I will be done when He decides it is time.
On a lighter note: I have had a good week. I got to see aunt Twylia and Great-Grandma Reta on Wednesday night and Kaden came to Grandma Trish's to stay the night with me. Then aunt Twylia came back to play with me on Thursday and I really enjoyed that. I have spent the last 2 days with Grandma Trish playing with Kaden and Kaysa! Late last night (after a very long late nap) I even got to go to the river for a little while and play on the swings and in the sand. I think tomorrow we might go to the new water park at Woodward late in the evening. We will just see how the day goes! Also, I am adjusting very well to my new glasses.
Thank you again for everything and please continue to pray for me!
Kya Kay

Wednesday, July 22, 2009

I Can See Clearly Now!

I got my new glasses today! I really like them and I can see better!

Here is what I look like now.

Now Kaysa and I both have glasses!

I have had a good day today. I got a good nights sleep and I have taken a good nap. I should be all rested up! Kaden is coming to play with me and I get to stay with Grandma Trish! I might even get to see Aunt Twylia. What more could a girl ask for?

How about a night with Jennie Finch! I got all of the USA World Softball Teams autographs and I got to meet Jennie Finch! She told me I made her want to go home and have a little girl!

Here is a picture of Kaysa, Daddy and I with Jennie Finch!

Please continue to pray for me and for my friend Gary! (Actually for all the kids with JDM!) He is getting better, but he is still on a feeding tube. I know that you guys have special prayers and that with everyone praying for us we will get better! I will see you soon! Thank you for all your prayers and cards. (They make me feel very special.)

Thanks!

Kya Kay



Tuesday, July 21, 2009

Lessons Learned

Kya is doing pretty good. She has enjoyed Kaysa being home and playing with her everyday! She seems to be staying pretty strong and she looks pretty good. She may have a light pink tone, but when it is 100+ degrees everyday until sundown that isn't a surprise. The sun has definitely been our enemy this summer! We have tried long naps during the day so we can play late in the evening into the night outside and when we have to be out we wear long sleeves, pants, and her sunhat! Along with 85 to 100 sunblock! But, Kya is great about getting all of her gear on and keeping it on.
Lately she has really started to develop into her own little person. She is kind of starting to leave the baby/toddler stage and go to the toddler/big girl stage! (This is a very scary thought.) Kaysa is her mentor and whatever she does Kya is bound to do. This is not always a good thing! In the last week we have learned what not to do and that Kaysa is not always a good influence. Lessons learned last week:
1. Don't play basketball on the asphalt with no shoes! (You will rip off a toe nail! Ouch!)
2. Don't eat frozen chocolate chips! (Unless you are ready to lose a tooth!)
3. Don't paint your feet with nail polish once you have lost your toe nail! (Yes I mean the skin!)
4. Don't fingerpaint on mom's wooden dining room table in new pajamas!
5. Don't spread the fingerpaint through 3 rooms of the house trying to clean up your mess!
6. Don't tell your little sister it is makeup and use nail polish over her entire body!(Once again skin from eyebrows, nose, arms, legs, back, bottoms of feet, you name it!)
7. Don't jump from the 3rd step of the ladder onto your bottom bunk bed! (Wooden headboards make huge bruises and knots!)
8. Nail polish does not easily come off of skin and it really is hard to get out of eyebrows!
9. Don't throw water balloons at people much bigger than you it hurts when they throw back!
10. Don't wear flip flops or go barefooted when you are missing a toe nail!
These are just a few lessons learned at our house last week! I guess kids just have to be kids and learn on their own, but some weeks it feels like crazy chaos! I was very upset at first when all of this happened, but then I thought about it. I am so glad that I have 2 girls that are able to get up and wreak havoc! I am so excited to see Kya up and playing and trying to do everything she shouldn't do that it is hard to be mad very long! And I know that Kaysa knows better. Then I think about everything that she has had to deal with also and she is just excited to have Kya up and playing with her and trying to be just like her that she doesn't think before she does things! She is just trying to entertain Kya and keep her happy and active! I did throw away all of the nail polish and makeup. The finger paints have been banned to outside and Kya is not allowed on the bunk bed ladder. Maybe this week will go a little better! (If not you may have to come visit me in Fort Supply!)
On a positive note, Kaysa got her back handspring by herself on the floor at Gymnastics! This is a big accomplishment and we are very proud of her. She really wants to go to team, but we told her coach we are going to wait until Kya's disease is a little more under control and we aren't traveling as much with her!
Kya can't wait to get back to dance. She would love to take gymnastics, but that is not an option! She is also mad because we aren't suppose to let her on the trampoline, Dr's orders! Overall though she is doing great considering the disease and everything it can do!
I also learned a lesson this last week. My friends took their little boy Gary, who is 2 and has JDM also, to Chicago to see Dr. P for the first time on Monday. By reading their comments I think they were a little disappointed with what they found out. Also, there was another parent who took their child to Chicago to Dr. P and they were disappointed also. However, that dad made the comment he went there looking for a miracle and they didn't find one. Basically, they were checked out just like we were and told that really there wasn't much else that she could do. That they were being treated properly, she didn't see anything wrong with their care, and that she would be a consultant for their treating physician if something came up. She also warned them to take care of themselves! Both families were disappointed with that answer and offended by her comment to take care of themselves. (which I understand she told me that also and I thought I know I have paked on the pounds you don't have to remind me!) But, it made me think really hard why I wasn't upset with my Chicago trips. I realized it was because they were looking for a miracle and I was looking for reassurance! I wanted her to say you are in great hands in Oklahoma and you are doing everything you can! I wanted her to say I know your child, I know her case, and when you need me I will be here for you! I wanted to have faith and confidence in the decisions we had already made and I got that! She only had to make a few tweaks and things were great!
I realized that we are that way with God sometimes! We get so disappointed because we are looking for a miracle instead of listening to him say YOU are doing the best YOU can do. I know your name, I know your case, and I am here to help when YOU decide YOU need me! He is the only cure! He is the only Miracle! We can look for everything here on earth and never find what we are looking for or missing! I hope and pray that everyone looking for a miracle anywhere else will realize that HE will provide it if we have faith! Kaysa has prayed from the start that Kya will be the first kid "cured" and she truly believes with all of her heart that GOD will answer her prayers! We as adults need to be more trusting and believing in our prayers and turn it all over to HIM!
Please continue to pray for us! (All of us!) Pray that Kya will adjust well to her new glasses that she should get this week. Pray for continued healing in her body, that it will adjust to the tapering of the meds, and that her levels will stay down without the IV Infusions. Please, continue to pray for the doctors and researchers that they find a cure for this disease and in the meantime that they are able to successfully treat each and every patient!
Thank you again to our wonderful prayer support! The cards and prayergrams that we continue to receive are so uplifting! We live in a supporting part of Oklahoma, not just our community but the many surrounding communities! Thank you again for everything!
Kalee

Wednesday, July 15, 2009

New Vision for Kya

Kya had an appointment with her opthamologist this morning. (Not that a 2 year old likes having her eyes dialated, but we have to!) He told us that she now needs glasses. We just saw him in January and everything was OK, but things have changed in the last 6 months. So, tomorrow we will go to his office in Oklahoma City so she can pick out the glasses she wants! Also, she will see her pediatric dentist and have her teeth checked out really well. They will also finish Kaysa's dental work tomorrow while we are there. Then, tomorrow night Kaysa's coach pitch softball team will get to lead team USA onto the field for the World Cup of Softball and each player on her team will be introduced. It is suppose to be on ESPN and the game starts at 7:00 p.m. Kaysa is very excited!!!
Kya is still doing pretty good. She looks a little rashy, but just slightly. She is having a steroid day today and that is not fun for anyone involved! Please continue to pray for healing in her body and for her team of doctors as they decide what to do next. Thank you once again for your support!
Kalee

Monday, July 13, 2009

Not So Good News

I got Kya's Aldolase results back from last Tuesday and they were up to 7.1. Yes, they are in the normal range, (high end of normal is 7.6) but they were up by 1.5 points from 3 weeks ago. I am waiting to hear from the doctors to see if they still plan on doing one more treatment and stopping or if they are going to change their plans. I know that tapering is a balancing act and it is the hardest part of the disease, but that doesn't ease my tension any at all. I do know that I have to trust the medical professionals, but I just want to scream "She is doing just fine on all this medicine lets leave everything alone!" But that is not possible!
Kya has had a busy weekend with the big Harrel Reunion and all of the family and cousins to play with. She is holding up pretty good. She is taking a little longer naps and fatigues easier, but she still stays positive and keeps climbing and going! Please continue to pray for Kya and that her levels will start to level on their own. I know that God can heal her and that with your prayers she will get better! Please also pray for Lake and I. It is hard to get your hopes up and then the wind taken out of your sail! It makes me very angry and upset that your own body could turn against itself! However, I had told Lake this weekend and before the infusion last week that I thought her levels were up, so it shouldn't surprise me!
Once again thank you for your prayers and support! Please continue to pray for our family.
Thanks Again!
Kalee

Wednesday, July 8, 2009

More Good News

Yesterday went very good. Kya had a treatment and she saw Dr. ONeill. The doctor was very impressed with how well she was doing and how great she looked! We will have another infusion on July 28th and then only take our daily meds and our weekly shot. She will do this until the first of September and then they will pull her blood again to make sure she is maintaining OK. Then if she is doing good they will lower her Methotrexate by another .1 ml and try to taper her off of that first.
We are very excited right now and we pray that everything continues to progress. Kya is doing great and we praise God for her progress!
Thank you so much for your prayers and support! Please continue to pray for improvement and complete healing in her body. Thank you so much!
Kalee

Monday, July 6, 2009

Another Treatment

Kya has another treatment tomorrow and she will see the doctor in Oklahoma City also. Please pray for her and us. Her normal infusion lady, Mavia, is gone on maternity leave and Kya does not like change!
Thank you for the many payers and for the great support! Many of you have sent cards almost every week and we greatly appreciate it! This means so much to our family and you have a special place in our hearts! Your prayers and support will never be forgotten. Thank you again and please continue to pray for complete healing!
Kalee

Friday, July 3, 2009

GREAT NEWS!!!

We heard back from Chicago and Kya's bloodwork all came back in the normal range. We are so excited! They also told us that her last two infusions will be this Tuesday and again on July 28th. Then they will only give her daily orals and her shots and see how she does. I am not sure how often we will have to see the doctor and draw labs, but they will be monitoring her closely! I am not sure how to feel at this point. Excited, scared, hopeful!
Thank you for your many prayers! We know that it is your prayers and support that have helped her get through this. You mean so much to us! Please continue to pray for improvement and healing in her body! Thank you again!
Kalee Carpenter

Wednesday, July 1, 2009

We won the championship! It took 2 tries, but we did it! They made our coach pitch team forfeit because we didn't have enough players without our t-ballers and they were still playing! But, we will still play in the losers bracket Thursday at 7:00. Kya was so excited after the games that she ran the bases for about 10 minutes after everyone was off the fields. She was telling everyone that she is going to play t-ball next year! (I am not sure about that) Our little girls worked very hard and so did all of our coaches and "staff". Congratulations girls you deserved it!
Kya is continuing to hold strong. We still haven't heard anything back from the Chicago lab results. I am going to call them today and see if they know anything yet.
Thank you for all of your prayers and support. Please continue to pray for Kya and her healing! Also, please pray for Kaysa and her dental work that she has had done and will have done. Thank you again for your prayers!
Kalee