Sunday, August 30, 2009

Kaylea turns 9!?

Her favorite gift this year!!!

It is hard to believe that our Kaylea turned 9!! She is such an amazing, strong, beautiful, happy and brave young lady. She has endured more in 9 years, medically speaking, than most of us do in a life time! She has been in our arms for a mere 3.5 years, but honestly, I don't really remember the days before Kaylea.

Since we know she has more surgeries and hospital stays in the next year or two, we started her off with an iPod shuffle! She hasn't taken it off since all her music was put on it Friday night. She ignores us just like her older siblings! Bless her heart, she fell asleep in her walker traction tonight listening to her music! HAHA

We had cake and ice cream here at home and of course took cupcakes to school on Friday. When she was in the hospital my parents had a party there for her so they could celebrate her birthday with her, too!!

Her traction is working! When she went in for her surgery the curve in her back was 88˚!!
Exactly 1 week later, her curve was only 54˚ !!!!! I think that is AMAZING. She still has about 6 more weeks in traction and then on to the castings. She will wear a body cast for 6 - 12 months with the casts will be changed every 2 months. After the castings, she will then be in a brace for some time. That is at least the plan for now. We are still praying for guidance in this area. If we follow this plan she will have to have a tracheostomy. The trach is the part that really scares me! I'm really nervous as to how it will change her life. If you have ever dealt with a trach and would be willing to discuss with me, I'd love to hear from you!!! We know it will require nursing care for her at least at school and on the bus to and from school. John and I will also have to attend 40 hours of training to learn to care for her. Any thoughts, comments, ideas are appreciated!!

Thanks for checking in.....


Tuesday, August 25, 2009

Time A L O N E

Home at last...time to nap!!

11:00 am ready to go! Too cute!!

6:30 am....ready to go! Still a little sleepy!!

Tomorrow John will go back to work and I will have a few hours alone each day!! HEAVEN.
He admitted after having all 8 kids this weekend while I was at the Women of Faith conference that he has a much easier job than me! LOL He mentioned yesterday that if he had known the first day of school was going to be so *busy* he would have gone to work!! HA! It was nice having him home to help out though! He is glad to be out of the hospital and home!!

The school was not prepared for Kaylea to arrive yesterday. Transportation was not ready for her, either. She told me this afternoon the kids like to watch her spin! LOL I am grateful they are not scared of her and that they accept her with all of her issues. I'm am praying that if she does infact have the trach put in, that her transition back to school will be smooth. We still have not decided about the trach yet.

So, this year I have a Junior, Sophomore, 5th grader, 4th grader, 2 2nd graders and 2 in PPCD which is the pre-school program for children with disabilities (they go 1/2 a day). I am certain this will be a very busy school year because they are also participating in JROTC, Marching Band, speech therapy 1 time a week (they are pushing for 2 times) OT and PT, Art Club, Latin Club, Orienteering and we have at least 5 surgeries planned and a trip to Disney World planned!!!!

There will be no time for boredom!!


Sunday, August 23, 2009

Hospital Fun!!

She is a pro at hanging and spinning now. This was taken when she first learned to do her tricks! She hangs most of the time now. I'm a little nervous sending her to school tomorrow!! LOL She was released Friday 1 week early!!! WOO HOO!!! She is doing great and excited about starting school tomorrow :o)
We still have not made a decision about her getting the trach.....


Wednesday, August 19, 2009


Cool tat, Kaylea!!
Visiting with the clown
Kaylea has an appointment tomorrow with the ENT. They are suppose to let us know their reasoning for wanting to put in a trach. I'm still not for this option, but we will at least find out what they have to say and find out what it would entail and our options. I am hoping the hospital won't drop her as a patient if we do not have the trach put in, but we will deal with that issue, if it becomes an issue.

Kaylea is doing exceptionally well and tolerating the procedure better than expected. She is up to 15 lbs of traction. She will have pictures taken Friday to compare to the ones taken last Wednesday before her surgery. THEN....we should be able to bring her home over the weekend!! WAHOO!!! A whole week early!!! Which means she shouldn't miss any school, except they aren't expecting her. We do have to figure out the transportation issue and the issue of switching her from her walker to her wheel chair. They both have the traction pulley system attached so she is able to switch between the two.

I am going to a Women of Faith conference Friday night and Saturday, but we should be able to check her out of the hospital on Saturday and come home on Sunday.

She will go back to have the Halo removed the 1st of October. Then they will cast her torso for 6-8 weeks. Also, that week Owen will have a hand surgery. He is very excited that he gets to sleep in the hospital :o) He has been waiting for his turn!! If we can squeeze it in, Rylea will have surgery to correct her club feet! Sound like a busy fall to me!!


Sunday, August 16, 2009

Friday, August 14, 2009


I also made coordinating shorts to wear underneath!
I made my first dress a week ago. It turned out darling. I just love the fabric! The pictures aren't great, but you get the idea. The original pictures are on my camera and it is with John. My old camera is broken :-( So, I used my phone. This dress is Rylea's. It turned out a little small for Kaylea, so I need to adjust the pattern a little.

Look at her now!

This thing is HUGE!!!
There is no stopping her :o) She is up and running. Well, maybe not running, but she has has a walker and is on the go! She doesn't look too thrilled but was happy this morning when I talked to her on the phone!
The anesthesiologist came in this morning and talked to John. She wants to have a trach put in because she was unable to intubate her for surgery.....YIKES!! Since the surgery was short they just kept her on a mask....but for future more involved surgeries that will not work. I have talked to my 2 experts (aka my 2 nurse sisters) they say *NO*!!!! So, I guess unless the docs at the hospital can give us some really good reasons why we need to go that route, we will be declining that offer for now!
That's the 411 for now!!



Thursday, August 13, 2009


Her 1st time in traction! Don't think she is very happy! :o)
Kaylea is already up and in traction! She got her IV out, too. They are just giving her pedialyte through her G-Tube. She had a rough recovery this afternoon, but is doing well now. I think it was because I am not there with her! LOL This is the first time I have not been there for a surgery, so it has been hard, on both of us!!
Grandma and Grandpa spent most of the day with her and daddy! Grandma, of course, came with new clothes for her! See, her mom (me) didn't know the pins would be so long and didn't allow for that in the clothing that was packed! OOPS!! Oh well...we'll take new clothes any day.
Do you think the school will allow her to wear halter tops?? HA!

Good Night!!


You can see how far over her rib cage is....

Different view
Another view
She is now in surgery to attach the halo to her head. It shouldn't be too much longer. Ok, just got a text and they are done! WOW! Quick for us. I'll post pictures later of the halo on her. For now, these are pictures of her back from this morning. Her curve is not as severe as some, but it is fairly significant. You can see in one of them that her upper body has shifted over to the right quite a bit. Her ribs are also smushed (sorry, the most appropriate word I could think of) together on that side, too.

Thanks for checking in with us!



Ready for bed....
Kaylea had tests run, pictures and video taken, appointments with doctors, fitting for her wheel chair and walker, and a bath! Her surgery is scheduled for 11am tomorrow! It is suppose to be a fairly short surgery and recovery. We are hopeful that this will work for her and give her relief in her right lung. I have read a couple of blogs today of children who have been through this or are going through this same procedure now. They are doing GREAT!!! After I get some pictures of her and hear how she is doing, I will probably go ahead and post here.
Thanks for the prayers and well wishes!!


Tuesday, August 11, 2009

Ronald McDonald House

Isn't she B E A U T I F U L ????
John and Kaylea are safely at the RMH. They will only be there one night as Kay will be admitted to the hospital tomorrow and they will stay the night there! They have a FULL day of appointments tomorrow to get her ready for surgery on Thursday. The surgery will not be too complicated or traumatic, I don't think....unless 4 screws in your head is traumatic! ? Ok, so maybe a little traumatic for her. The contraption she will be in is a bit barbaric to me! So, due that, I'll only be posting the pictures and in depth updates on the Rylea & Rubea blogspot. If you do not know the address and would like to know and be invited, please leave me a comment or send me an email. We have no clue what time the surgery is on Thursday, but I will update here when I find out. I will also post some generic updates here as well. This is all in preparation to straighten a very curvy spine :o) Over a year ago her curve was 87˚ so I am sure it is worse now. Thanks for any and all prayers!! We are hopeful that this will lessen the stress on her right lung and her stomach and that she will gain an appetite and some weight! She is still at 30-31 pounds and will be 9 in 2 weeks!!


Tuesday, August 4, 2009

A long time.....

It has been a really long time since I have updated here! Things are going, well, about the same as usual. We've been trying to learn to read a little better this summer, do math facts a little quicker and stay cool! It has been very hot here in the south!! Or, at least in Southern Texas!

Kids have been to various camps and I have learned to sew, like from a pattern!! WOO HOO!!! I made a darling, darling dress with coordinating shorts for Rylea. I will be making one for Rubea and Kaylea as well. I think I have enough to also make one for my neice, Aubree, too!!

We have one surgery under our belt for the summer, Rubea had an expansion of her titanium ribs. The lengthened each side by 1.5 cm. The average is only .5 - 1 cm. She has really grown. Infact, while making the dresses and measuring each girl, we found there is very little difference in them. It amazes me that our 3 yo, 4 yo and almost 9 yo can use the same pattern.
The biggest difference is in height. Tho, Kaylea is the height of an average 4-5 year old and the baby girls are closer to the average for their age. We did find that according to her bone age, Rylea is at a 3 - 3.5 year old instead of a 4.5 yo. Kaylea's is normal.

Kaylea has surgery this Thursday and then Kaylea, Rylea, Ethan & Owen all have surgeries scheduled for this fall and Rubea will be due for another expansion in January 2010. Looks like we have our life planned out for the next 6 months.

Johnathan and Emilea were able to fly to Nashville to attend Camp Electric this summer! They are already signed up for next year. They had a great time and still talk about it daily. One of the guys from Pillar is also getting them tickets to the Texas Hill Fest in Sept. They are excited to get to attend that, too!! Oh, and we are going to the Toby Mac concert at Fiesta TX on Friday!!