Thoughts gathered, hopefully

I know a lot of people have been waiting to hear how our appointment in Kansas City went.  I have had to gather my thoughts together and coalesce all the information before being able to spit it out and share it with y'all.  I thank you so much for the prayers, they were answered in so many ways. 

First we had our ENT appointment. The doctor remember us from 3 years ago when we got Kaedra's tubes put in. I thought that was pretty amazing! Or course, Kaedra is pretty amazing, so maybe that is why she is remembered. :-) The surgery to close her trach hole is a little more complicated than we thought. The doctor will be first stitching the trachea, then the muscle layer, then the skin layer. There are a few very bad side affects that can happen from the surgery, so she will be kept in the hospital a few days to watch her carefully.

Next we had our appointment with our surgeon, Dr. Nigel Price.  The appointment went WONDERFULLY and really quelled all my fears and settled any problems I had with his program.  We were able to talk a little about where Kaedra is headed in the next 10 or so years and what we can expect along the way.  We also talked about our overall goals for Kaedra by being in the VEPTR program: to increase her lung space and give her rigidity in that chest wall. It does not look (at this time) like she will need any VEPTR rods to straighten her scoliosis. Her curvature is relatively minor (31%) and has not grown very much. If it was to grow, he thought it would be when she hits puberty.  If so, we would discuss what to do at that time: ie VEPTR or spinal fusion. Plans were made for Kaedra to have an expansion on May 21st. 

Our last appointment was with a plastic surgeon. Because of the lack of skin and muscle across her back, any further surgeries really have the potential for the titanium rods coming through.  (like one did a few summers ago)  The plastic surgeon is going to assist in the surgery, hopefully decreasing that potential.  He will also put a layer of artificial skin in between the rod and her skin.  He is hoping that one time will be enough to make the skin thicker but he said that if it wasn't he would continue to do the same thing at each surgery. 

All in all, we got a lot of information and we were happy with all the appointments. Thank you so much for your prayers!

Titanium Rib Project (aka VEPTR)

This article is a wonderful article about the Titanium Rib Project and the operation that saved Kaedra's life:
http://www.aaos75th.org/stories/physician_story.htm?id=15

We first heard about the Titanium Rib Project right after Kaedra was born. (if you don't know Kaedra's story, you can catch up here) We were very blessed that she was moved to a hospital where the doctors were familiar with the project. About 4 years before Kaedra was born, a little girl was born with Jarcho Levin Syndrome at this same hospital and her mother had researched and found the rib project.  Because the doctors were acquainted with this other little girl, they immediately informed us about the Titanium Rib Project and started getting us ready for it.

Kaedra has benefited greatly from the titanium ribs.  (VEPTR=Verical Expanding Prosthetic Titanium Ribs) Before she had them she had little lung function on her left side.  Furthermore, although we didn't know it at the time, since her diaphragm didn't have a rib to attach to, her organs had all pushed up into the lung area further complicating her lung ability. Dr. Smith and Dr. Campbell discovered this about her organs and when they implanted the ribs they also reattached her diaphragm and moved her organs into the proper place.  Immediately after the surgery, Kaedra's lung capacity was increased by 60%. The person monitoring her lung function said he is always amazed at these surgeries and at the incredible results.

Right now Kaedra has to continually have surgeries to keep her growing and keep the lung cavity expanding so her lung can continue to grow.  There are new strides being made in the research where soon they will not have to do surgery to lengthen the rods - instead the expansion will be done with magnets.  They will still have to have major surgeries to replace the rods (when they are fully expanded and need the next size) but it will be wonderful not to have to have surgery and yet still get expanded!

Most "rib kids" have the surgery every 6 months. Our doctor is more conservative and doesn't believe that Kaedra needs the surgeries as often. We don't necessarily agree with him and are hoping to find a new doctor soon. At this time she hasn't had a surgery in a year and a half.  The pulmonologist that we just met in the hospital said that he agrees with us. The more surgeries she has now, the larger her lung area will be when they have to discontinue the expansions.

When Kaedra is fully grown (around 12 or so) they will no longer lengthen her rods.  Different doctors do different things. One thought is to fuse the spine.  Another is to leave the rods in.  Our doctor is not discussing this with us at this time. He says by the time she is that age they will probably have new ideas and theories. 

We are so very grateful for Dr. Smith and Dr. Campbell.  Dr. Smith died about 2 years ago and is sorely missed. Dr. Campbell has moved from the San Antonio hospital to Philadelphia.  They are wonderful men that have saved so many lives with their "out of the box" thinking.

Her Triumphant Health

One of the things on my 101/1001 list was to write at least one poem a week. I haven't written any poetry in a long time so I decided I needed a little help. I got a refrigerator-magnet-esque program for my iphone called Poetik and wrote my first poem yesterday.

Here it is:

Her Triumphant Health

disease hunted her
strained us til withering.
forgoing my compass to fly into proof in the Utmost.
we praised when all still not well-
a novel meditation
to describe love's debtor.
and how my terms are not His.
that Love's remedy can be maddening
but winter grace-fully vanished
into our borrowed treasure.

Kaedra's KC Appt

Okay, first of all, I didn't really like our surgeon already. He has always put Kaedra in a box with "these kids." He seems to forget that she doesn't have a syndrome and that she is basically healthy! He even referred to Kaedra as "terminal" once!

This time he told Michael, "she already has her trach out, what else do you expect out of her? She is already 90% better than most of "these kids!" You can't expect much more." ACK!!!! Plus when we said that we concerned about the deep "s" in her back and that her pulmonologist said she needed surgery he said "well if all you are concerned with is how she LOOKS you need to re-evaluate having a special-needs child." Basically his main point was that they don't do the surgeries as frequently anymore. He said he didn't even want to see her for another year. (which would be almost 2 years from her last surgery!!!) He said it was too much stress on her body to keep having surgeries and that she wasn't going to grow much anyway, so she doesn't need it. (she is already tall for her age!)

Anyway, we need a second opinion. The problem is...where? who? We are going to research where we can take her for another opinion! I may make an appointment with San Antonio (since they are probably booking months out) and then pray we get transferred sooner so we can see another dr somewhere soon.

This is not unusual with Kaedra. If we had listened to the doctors a little over 4 years ago we never even have had her trach'd because she "wasn't going to make it." It was also suggested that we put her in a "home" since she was never going to have any quality of life. We never gave up on her back then, we certainly aren't going to now!

Kaedra neck xrays

So we got a callback from the dr about kaedra's x-rays. It appears
that she has spina bifida occulta. That is the least problematic of
the spina bifidas so it shouldn't be a big deal and shouldn't affect
her neck movement. He wants an MRI on her neck to make sure and then
we will start physical therapy.

I am very happy that she should have full neck movement but not
thrilled to hear she has a new diagnosis of something. And you know
what?? I am positive Jesus took on spina bifida (of all sorts) from
the cross! So I know she is healed!

Blessings,
Kahri

Sent from my iPhone

BIG BIG NEWS!

Last Monday Kaedra had a momentous occasion in her life! After 4 1/2 years, she got her trach out! She still has bandages on her neck (while the hole heals) but she has been without her trach this whole week! Hallelujah! God is sooo good!

Praises!

I have such wonderful praises! Kaedra has been trying lots of different foods lately! Here is the list of food she has now tried and will regularly have:

• water
• milk
• juice
• broth
• peanut butter

This is SUCH A huge praise! She has tried the last four on the list in just the last week! Today she tried both broth AND peanut butter! And she didn't just try it, she had more and more! WOOHOO!! We are SO excited!!

Thank you SOOOO much Amanda, for getting us to where we are now!!

Here she is having milk for the first time!

Trip to North Pole?

So Kaedra was acting up this morning and I said "do you want to go see Santa?" in a "if you don't act nice, you won't get to see him" voice. She said, "YES!" I said, "then you better be good."
A few minutes later she said, "I get out at North Pole? I get out to see Santa at North Pole?"

Heehee.



It ended up Bass Pro was nearer.

At least she's got aspirations....

Here's my latest installment in "Stories of my cute kids"

Yesterday we got Kaedra all ready for church including the (seldom used) coat which thrilled her to no end. She was off of her vent to walk into the garage and get in the car. However she decided on an alternate route. Oh she did walk into the garage and then bypassed the car and continued down the driveway. I watched her, slightly bemused, until she kept going INTO THE STREET. I have a medium long driveway, so I start yelling and running and she just turns around looking at me. I get over there, pick her up and ask her what she was doing.
"Walking"
"No, we're going to church..."
"Yeah (giving me a "DUH" look), me walk to church."
"well, that's all fine and dandy, but it's below freezing out here and I really think we should take the car."
"me walk"
By this time I was just laughing so hard that she started laughing and I got her in the car without further ado. (thank goodness. I could handle no more ado yesterday)

Soooooo, then we get OUT of church. She is once again off of her vent to walk to the car. We get outside and are walking towards the car when she starts turning in circles and asking "moon? moon?" I show her where the moon is and she gets VERY excited. In fact, so much so that she starts walking in that direction. I asked her "where are you going?" I got another "Duh" look and she said in her best teenage voice "to da moon!"

Well, of course....



(ps. I am adding this to Tiny Talk Tuesday which I just discovered thanks to a new commenter, Mighty Mom! Thanks MM! Go check out Not Before 7 to see other Tiny Talk Tuesday participants!

Kaedra is home

Kaedra came home on Friday afternoon. She is doing much better. She is still on her vent, oxygen and has 15 hours of IV infusions every day. Things are very busy around here right now, I am sorry I have not updated sooner. Between her feedings, nebulizer treatments, IV infusions, suctioning and her vent, she is a handful by herself! We also started school last week and I am more organized this semester.

well that's all the time I have. I will be back sometime. Thanks so much for your prayers, keep them coming!

Kaedy is feeling a bit better!

Kaedra Prayers Needed

Kaedra is on her way to the hospital as I write this. She has a serious case of pneumonia. Dr. Carey said it was the kind that set in quick and can be taken care of fairly quickly. He said she would be in the hospital for a minimum of the next 3-5 days.

We have a few prayer requests:
1. Obviously, that she would get over this quickly and that she would feel better soon. (She feels horrible today, won’t even move)
2. That she will not need to go on her vent, or, if she does, that she is able to get off quickly again.
3. That they will let her out of PICU as soon as possible so we can all go up there and see her. (Since Ethan isn’t allowed in PICU, I am not able to go up there at the moment. He isn’t weaned yet… and I don’t really want him around all that sickness anyway.)
4. That Michael’s new job shows him favor and understands that he needs time off already.

Thank you all!

Recent Pics

Here are some recent pics from around our house and at our Mark 10:14 party. To see more pics of the party, check out my homeschool blog.

Kaedra update

Well Kaedra has had a couple of hard weeks.

I want to say that I believe that Kaedra is healed from the top of her head to the tip of her toes. I believe that her healing happened when Jesus died on the cross over 2000 years ago. She is healed in all aspects -- full ribs, perfect spine and lungs as well as healed from colds, infections and anything else that tries to come up against her and the Word of God.

That being said, Kaedra was attacked by a "little" cold. It was just a runny nose and cough. However, with the cough, she was having more trouble breathing and her oxygen was increased so she could breathe comfortably. Through problems with equipment, problems with Kaedra turning her own oxygen up, and our trying to make her comfortable she ended up being on about 4-5 liters of oxygen. (she is usually on about 1/8-1/4 liter oxygen)

Last week she started to bleed a lot out of her trach. It is not uncommon when she is coughing a lot, so we did not worry about it. However, the blood increased and Kaedra was not able to catch her breath. By Thursday night she was in pretty major distress. Michael and I prayed over her and within minutes Michael was given insight by the Holy Spirit that she was on too much oxygen.

Now this was something we would NEVER have thought about. We have never been warned about giving her too much oxygen and we don't know anything about the affects or anything. It was completely a "God thing."

So we immediately turned her down and she was doing much better within 20 minutes! She is continally getting better everyday. We are praying against any long term damage that the extra oxygen might have done. (I don't want to speak anything negative over her, just join us in agreeing that there are no long term affects! HALLELUJAH!)

Isn't God awesome??

Pictures from Kaedra's Birthday

Kaedra had three friends over for her birthday. Natalie from FAITH and our co-op and Braden and Colton, brothers from our church. They are almost all about the same age. It was so funny watching them try to figure out pin the tail on the donkey (even when they had no mask on, they didn't know where the tail was supposed to go!), musical chairs, they just wanted to dance on their own squares, and who exactly was supposed to get the presents. Here are pictures from the fun afternoon!

Big Happenings in our little world

Well, first of all, for all of those who have been praying, Michael got a new job!!
He was hired by Sam's Club and will be starting out as a developmental store manager. Basically he is a manager apprentice for up to 12 months. It is a program for people who already have lots of management experience but have not managed a Sam's Club before. He will probably start Tuesday.


Second of all, Kaedra turned 3 this week!! Yes, the child they said would never make it, never walk, never talk, never have any "quality of life" ran around and played musical chairs, pin the tail on the donkey and helped three of her friends sing "Happy Birthday."


Brittany had an all-nighter at church this Friday night. They went to a concert of Thousand Foot Crutch, Toby Mac and Barlow Girl. Then they went to glo-bowl and afterwards headed back to the church to play games and watch movies.


On Saturday, we went to our homeschool group's Thanksgiving Feast. It was a lot of fun and we had some delicious food! Here is a pic of most of the kids there. (I had to take two pics to get them all in!)



Ethan is learning to walk around holding onto furniture. It seems like he went straight from crawling to cruising! He is getting so big. We are about to transition him to his crib for at least part of the night.


Our Mark 10:14 group went to the firestation this week and had a great fieldtrip there.


I am starting a Thanksgiving/Pilgrim unit study with Emily. We are both really excited about it! I have a bunch of things for the walls that I bought from a retiring teacher. I am going to decorate tonight while she is at church, to surprise her.


Today would have been my grandmother's 100th birthday. We lost her last year and she never did get her letter from the president. However, we know she is enjoying herself in heaven and would much rather be there. :-)


Michael and I are huge X-Files fans. In fact, it is about the only thing we agree about as far as TV. :-) A few years ago I bought him the entire boxed collection for some holiday. Unfortunately I bought it from some Hong Kong operation and the DVDs aren't all good quality. (Be careful what you buy on Ebay!! LOL) Anyway, for the past few months we have been watching through all 9 seasons of X-Files. We should be finishing it up this week. We also heard there will soon be a new movie out. WOOHOO!


I will write a separate post updating about Kaedra as soon as I can. (Ethan is screaming for some mommy time at the moment..)

update

Kaedra is doing better. She is still a little lethargic, but we think it is related to her being on oxycodone and perhaps some pain. Thank you to everyone who is praying for her.

update

Kaedra came through the surgery on the wings of all the prayers she received. She has had no repercussions from the surgery. She did not have to go back on the ventilator and her oxygen has actually been decreased. We were let out of the hospital Saturday afternoon (a full three days early from their original statement) because she was doing so well! We got home Saturday night and let her take it easy yesterday. She seems in a little pain, but that would be understandable.

We are a little concerned because she is lethargic this morning. We are going to go up to St. John’s in a little to run some blood work to make sure she is ventilating okay. Please pray that everything comes out well with that.

Thank you!

Quick update

Kaedra is having surgery to remove one of the titanium rods in between 1030-1100am central time. Please keep her in your prayers especially for no reduction of her lung capacity or function, no need for the vent and quick recovery from both the surgery and the wound.

Will write more later.

For some reason I can't do titles.

Anyway, Betcha didn't think I would be back this soon...or maybe you did.

Kaedra's wound isn't doing good. In fact, her titanium rib is exposed. I can see right into her body. Not a part of Kaedra I want to see.

Kansas City wants us up there in the morning. Emily is going to stay down here this time. (Brittany, of course, is on her mission trip) Sherria is taking some time off work to go up there with me and help with Ethan and Kaedy (and me). She will have to be back by Monday, though. Someone will come get her and bring her home on Sunday. Michael has no more days off so he will be home working. Am I making any sense?

Anyway, she is slated for surgery on Thursday. They are talking about taking the rib out. We talked to San Antonio (for a second opinion) and they said the same thing.

Here are our prayer needs:
1. for the doctor's to have supernatural wisdom about this.
2. that they DONT have to take out the rib
3. if they do take out the rib, that her chest wall does not collapse.
4. on those same lines, we don't want her to go back on to the vent or oxygen.
5. that we can come home soon! FULLY HEALED!

Thank you!!