Look who's straight!

Kaylea recently recieved her long, long awaited titanium ribs! We are just thrilled with the outcome of her procedure! It is quite an invasive surgery and she had some major movement of her spine and ribs, but she did great in the hospital and only ended up staying a week!!! Thankfully she was only in the PICU for 4 days and then moved to *the floor* for 4 days!!

Unfortunately the hospital blocks blogger, so I was not able to blog during our time there, but now the we are home and she is settled, I have more time to share her experience and her

x-rays and pictures.

This is the side view. You can see the large hump on her right side is now MUCH smaller!! Isn't it just amazing??

In this view you can see how much they were able to straighten her spine!! We are amazed at just how straight she looks now!!

This is her spine the morning of her surgery!!

This is after the surgery and under the 3 white bandages are the incisions!! Look how nice her spine looks!! :-)

She looks sooo much taller to me and is looking more like a *9* year old young lady every day!! John just measured her and she is 2.25 inches taller!!!! WOW!!! She had to wait 3+ years to finally get her ribs due to her weight being so low. I blogged about her eating issues a while back. She is doing better, but still uses purging as a control tactic. We are scheduled to have her evaluated at yet another hospital in Dallas next month!! Our G.I. doc on base finally decided that she needs some outside help, but of course had to the top dog at the base hospital to get approval. However, he was able to accomplish that in a matter of a few days, so he has earned back some of my trust!! IF, she is admitted to the program it will be 6-8 MONTHS before she gets in. However, they have a great reputation and their program is in-patient, so I feel like it will be worth the wait.

See how great she looks!!!!

I have asked about having her trach removed, but none of her docs feel that it is a good time to do that procedure. Suddenly, everyone feels that this was a good option for her, but I'm not feeling it! We continue to have nursing services 12 hours a day, and I am finally getting use to having someone here all the time! The g-tube....well, that will be in for quite a while. At least until she successfully completes the eating/feeding disorders program! That is the scoop on Kaylea!!

S.T.T.A.R. Party

Rubea....suppose to be Hello Kitty?!?!

(photo taken by Kaylea)

Ethan

(photo taken by Kaylea)

Owen looking annoyed??

(photo taken by Kaylea)

Kaylea with her sparkly blue cross.

Johnathan & John...playing horseshoes

Rylea's rainbow

Rylea & Kaylea

Kaylea telling the clown what kind of balloon she wanted.

Rylea & Rubea looking cute!

(Owen & Daddy, too)

Ethan & Kaylea playing tether ball

We attended the annual STTAR party on Saturday. STTAR stands for Spinal and Thoracic Treatment and Research Center. It is the thoracic group at our local hospital that implanted Rubea's VEPTR rods. This was our first time to attend the party. The kids had a great time! They had swimming, bounce house, tether ball, horse shoes, face painting, a clown with balloons, playground and much more! The kids enjoyed snow cones, popcorn, cotton candy and of course our BBQ lunch!! We also met some great families that we are excited to get to know better. Enjoy the pictures..... (can you believe I took the girls in white dresses?)

Love,

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!!

Surgeries....

Rubea will be having club foot surgery tomorrow to correct both of her feet. She went through casting soon after coming home in October 2007. However, her tethered cord really did some damage so she will now have to have surgery.  After recovering from this surgery, she should be able to get up in a stander. This will be a whole new world for her. She has only been able to play sitting assisted or laying on the floor on her back or belly! We are so excited that she will finally get to be up right and start bearing weight! Of course, shoes are now in the near future for her!! She really can not keep shoes on, so we are REALLY EXCITED to go shoe shopping!!  

Kaylea had a minor surgery Friday afternoon. She had some complications with healing from her tethered cord surgery. So now her titanium rib surgery will not be happening in April, but we are hopeful she will be cleared for that surgery in May!! 

Thanks for checking in......

Carla