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,

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,

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!!

For Marjorie

This is one of the wires in Rubea's feet!  More cute pics of the girls on the Rylea and Rubea blog!!

Marjorie, this was for you!!  :-)

Home again

We are home again! YAY!! Rubea of course lost her breakfast on the way home :-) But, at least we are home! She is comfortable and sleeping. So, she goes back in Monday (3/30) for a cast change in the OR. Then the next Monday (4/6) to finish the surgery. Then hopefully we'll be done! lol

Thanks for all the prayers,

Carla

Update...

Good Evening!!

Rubea is out of her 5 hour surgery....it was suppose to take only 2-3 hours! WHEW!  She is resting comfortably with daddy and Emilea. Mommy is home taking care of the rest of the crew! They were able to do a big portion of the surgery, but did not finish. She will be going back in so they can finish in 2 weeks. The doctor (whom we love and trust) said she could not withstand him trying to finish. So, back to the OR in a couple of weeks! She has been nauseated and mad, so it was a fun time for me this afternoon. She has been an ANGEL for her daddy! Little sinker....

I'll update again tomorrow when we get her home!!

Carla 

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