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!!

Eating disorders.....

October 2009

Something that I have not mentioned here because I felt that this issue was too *private* to talk about here, or anywhere else. However, since reading the information provided I have come to realize that this issue IS important to talk about. Important to educate each other on. Did you know that approximately 1 million boys in the U.S. have some form of eating disorder??? I didn't! That children as young as 7 are being diagnosed?? That this is truly a life threatening issue?? One that needs to be discussed!! One that can cause a 30 pound 9 year old girl to think she is FAT?!?! One that I should have learned more about long ago!

I've been saying for two years that Kaylea had an eating disorder and needed some treatment to help her overcome her fear of food. She had a G-tube placed over 2 years ago, however, since the control of food intake was taken from her, she started vomiting. Thankfully while she was in Children's Medical Center in Dallas they realized too, just how serious this issue is with her. I am so thankful to the doc's and nurses who worked with her and fought our insurance company to get her admitted into their inpatient program. This paved the way for our pediatrician to find a program here that will accept her with her medical issues so that we don't have to move to Dallas. The program in Dallas would require her to gain 85% of her goal weight and for a child who has not kept any weight on for the past 2 years, this would likely be a very long and difficult road for her.

We are waiting to hear what her specific plan will be, but most likely she will be a partial inpatient here. She will attend their program 11 hours a day, 5 days a week. This is so they can monitor all of her caloric intake each day. She will have ALL of her meals/snacks at the clinic. Thankfully our nurses are willing to go and stay with her each day. I know she will be in good hands since both of our nurses are FABULOUS!!! I am certain that the program here will also require her to gain a significant amount of weight too, but being home will be so much easier on all of us. She will continue to be home bound for schooling purposes and I don't expect her to be able to return to school this school year. I am hopeful that she proves me wrong!

I am going to try to keep up with what is going on with Kaylea here on this blog. I know this is a sensitive subject, but so important to be educated about.

Home at last....

before trach surgery

isn't she BEAUTIFUL???

after the surgery

at home with Rylea...and no halo!!!!

and with Rubea!!

Kaylea is home!!

We have actually been home for a week, but it has all been a blur. We have nursing services for 12 hours a day and I can't seem to get anything done! Kaylea is happy to be home, but is quite bored when everyone is at school. She is on home bound until the new year, but we may try to change that!

She is in a cumbersome cast from her neck to her hips! She is having a hard time moving and doing simple tasks, but slowly she is figuring out how to maneuver and get around. She also has some raw spots from it rubbing her....I feel so sorry for her! It has to be uncomfortable and miserable!! ugh.... Of course, she is such a great trooper and doesn't complain! She amazes me!

She has such strength and courage.

She is able to talk *around her trach* so she is able to communicate just fine...however, it. is. one. word/syllable. at. a. time. :-) She had a speaking valve allowed her to talk *normally*, but the nurse lost it! Of course it is $100. to replace, too!!

I have no clue what the rest of her treatment will be.... we are going to be switching doctors.

Stay tuned......

Tomorrow, after a long week here in the ICU, Kaylea will have her 1st trach change. Due to the complications with placing the trach, she will have a CT scan in the afternoon. They will then decide if she will have another surgery here to correct the issue or if we can go on to Scottish Rite for her halo removal and casting. Scottish Rite would then handle our trach training and education so that we can take her home.

There is another issue going on with Kaylea that I am not ready to post about. It would keep her here in the hospital for quite a while longer and I (and the 5 younger kids)would have to move to be near her. I am asking for prayers for her and her health. She is having a very difficult time right now.

Love,

Tracheostomy

Kaylea had her trach placed on Thursday. Life has been, well, um, busy! She was suppose to have her first trach change Monday or Tuesday so we could go to Scottish Rite for her next surgery on Thursday. Well, as is normal with Kaylea, she had some complications! Unfortunately she is facing a possible second surgery here at Children's before she can be released to Scottish Rite. We will not know the details until at least Thursday!!

She is, however, doing absolutely wonderful! She is even trying to talk! She is still bossy, even without a voice! Everyone should watch out. I am sure she is bored and I know she is uncomfortable.

John and I are taking turns staying at the hospital with her and the other at the RM House with the little girls. My parents are taking care of the rest at home! So, for now things are good. The staff and volunteers at the RM House are all fantastic!

We were given tickets to the Mavericks vs. Memphis game tonight. Thankfully my sister, Karen, is able to come and sit with Kaylea and John's parents are watching the babies.

Thanks for checking in on us....

This is what happens when mom and dad have a date night!!

This is Johnathan putting whipped cream on Kaylea's hand

then tickling her nose..... you can hear Rubea saying *Kaylea,

Kaylea*!! lol

She fell asleep in traction!! Poor kiddo!!

A late call...

I called the numbers that the doctor left for John on Wednesday, but was never able to reach a person with a pulse, so I finally left a message. The young man returned my call and let me know that the doctor did want to talk to us today, so he would page her and have her call my cell number. He assured me that she would call today! As I was getting the girls ready for bed, doing laundry, cleaning the kitchen, reading emails and listening to the news, my phone rang. It was a 214 number....I knew the doctor probably had a phone number with that area code. I glanced at the time it was 8:57 pm. She was apologetic, but didn't want us to have to wait until tomorrow to hear from her! Ok.... basically what she said is Scottish Rite is unable to manage Kaylea's airway. Children's is unable to meet her orthopedic needs. Her orthopedic doc is adamant about the trach being placed. She has decided to have a look at Kaylea's entire airway and make her decision based off those findings. So, that will be done in the first week or two in October. If she feels that Kaylea absolutely NEEDS the trach, then she will discuss with us her findings and we'll make a decision at that time. ( She feels like the trach will likely be a safer option for Kaylea due to the nature of issues that she has and the number of procedures she will endure in the next 12 -24 months.) Then the next week she will be moved over to Scottish Rite and have her Halo removed and her cast put on.

They actually have her scheduled for the same day Owen is scheduled to have his first hand surgery as Scottish Rite, so Kaylea's will be pushed back to October.

Decisions, decisions...

Before I cut her hair for the halo!

She misses having long hair :o)

John got a call from the ENT doctors office yesterday, but he wasn't able to answer. Apparently, according to the message, they (she and the orthopedic surgeon) have a new game plan concerning Kaylea getting a trach. She asked that we call tomorrow to discuss the plan with her. I am anxious to hear what they have come up with now. We are still thinking this is something we do not want to do at this time, but are awaiting an appointment for a 2nd opinion!

To be continued.....

Love,

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.....

Love,

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.....

Love,

ENT

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!!

Love,

More F U N

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!!

Love,

UP!!

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!!

Love,

Surgery...

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!

Love,

Today...

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!!

Love,

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!!

Love,

Letters

Kaylea getting her face painted

Ethan riding his horse!!

We received letters in the mail from all 3 kids yesterday!!!  That totally made my day!  Owen says he *mist* us!  Today I got email replies to the emails that I sent to them. They have been horse back riding, swimming, face painting, playing all kinds of sports, including hula hoop :-)  The camp posts pictures daily so we have been viewing those daily.  Looks like they are having fun!!!   

I am excited to see them tomorrow and go to their awards ceremony!!!

 

Campers

Well, I took 3 little darlin's to camp yesterday, until next weekend!!  Can you believe it??  This is the first year for all of them, but they WILL be going back next year!!  When we pulled in yesterday, they had 3 different cheering stations. The kids loved that they were cheering for them!  Then we had many stations to get through to get them signed in and to their respective units.  The 2nd stop, after dropping off luggage, was the LICE check station!  Thankfully they all got through that station with NO issues!!  We have BTDT!!  I was happy to see that they did check the children, so we shouldn't have any coming home.  I was HAPPY that they all seemed ok, when we left them. We were glad that one of the counselor's in Ethan's unit is a young man with CP.  Ethan was shocked to see that he, too, had AFO's. The camp is for children with orthopedic disabilities, so all of the children had some sort of special need.  They are going to have a dance, so they all took their *dress up* clothes. They have swimming, horse back riding, archery, arts and crafts, drama, and of course all kinds of sports!  I think they will have a BLAST!!  All though I miss them, I am glad they had a chance to do camp like every other child!

Wordless Wednesday {in video}