Monday, August 29, 2005

Well I am down on the 5th floor of the San Antonio hospital again, using the internet while Kaedy sleeps. I keep having thoughts swirl around in my head that I should get down and write....Thought I would take a minute now and do that... first of all, an update. Kaedy got her JP drain out today...HALLELUJAH! Now we are just waiting on the incision. It is looking good (according to the doctors and nurses) so I am hoping we can come home fairly soon. Today is a weird day for me. The residents that we have had the whole time we have been here are now gone. Our favorite resident, Michael, had his last day here on Friday. They moved Kaedy to a different room yesterday (without telling me first, which REALLY freaked me out! and without moving her bags she brought from Tulsa, so they got taken to "lost and found!") We have a different nurse today, we don't have Michael and the hospital seems like a much different place...not as wonderful. I realize I am a creature of habit and I like things to stay the same so I need to grow a little in that area and get used to change better.

I had Kaedy sitting up in a high chair today. She was loving it, watching everyone that walked by, saying "hi" and "dadadada" and playing. When I went to get her out and put her on the crib, her trach came out. That was the first time that has happened to me. I called for nurses, but noone came so I just popped it back in and kept calling for nurses (I couldn't see it really well to make sure it was in right). Finally a bunch of nurses came all at once and Kaedy was fine (her sats never went down) and they were all proud of me. I had to calm my heart a little afterwards, but I have to say I wasn't really scared. It was just a "do what you have to do" moment. So, that's another thing I can cross off of my "things I need to do before we can take Kaedy home" list.

Downtown San Antonio is not a wonderful place. I can't speak for the rest of the town, so I won't venture a guess on whether I like it or not. I am also thinking that I probably would not like hardly any downtown places, unless they were little towns like Broken Arrow...I LOVE their downtown! There are a lot of homeless people here and I get asked for money quite a bit. The park across from the hospital has a lot of folks who sleep on the benches or ground. There are a lot of pigeons and they are very friendly...they are probably my favorite part of downtown! I ride a trolley back and forth from the hospital to the hotel and anywhere else I need to go. I have met some very nice trolley drivers, but most are grumpy and seem tired of people. I try to give them all huge smiles and let them know I appreciate them. There is a restaurant here called Shiloh's (pronounce she-lows) that is owned by Germans. It is my favorite place to eat. I feel very comfortable there, the food is good and I don't feel odd being by myself. My second favorite place is probably Denny's. There is some awesome Mexican food around here, but I don't feel comfortable going there alone..the places we went were more of a "get-together" atmosphere. My mom suggested I get some food there "to-go." I may do that! This place really seems like another country. I don't even feel like I am still in the U.S. It is very different here from Broken Arrow. In the last 24 hours I have seen an older man who was tatooed on every part of his body (that I could see) from the neck down, two ladies kissing, a man asleep with pigeons all over him, two FULL blocks of middle eastern women sitting on the sidewalks (I later figured out that they were waiting for two tour buses), a cowboy (hat, tight jeans, skoal in back pocket, boots, and a lasso stuck beside him) driving a trolley and a man with obscenities tattooed onto his bald (and very large) head. It has been interesting!

My mom and I had a good time. I miss having her least I could be sharing these sights with her or we could be talking the pros and cons of tinkerbell and what it would feel like if a giant could pick us up and hold us (sorry...private jokes! LOL). She is calling every day, though, and I am glad she came. That was the nicest time I have had with her. We even got matching Alamo mood rings!!! LOL I'm wearing mine, MOM!!

Well I better get off of here, the library is closing...I will be back someday soon.

Blessings to you all!!

Sunday, August 21, 2005

Kaedy is doing great today! She is just on Motrin and doesn't seem to be in pain unless she coughs and then she cries. Tomorrow they are going to switch her back to the Trach that she is used to and then Tuesday they are going to put her back on her home ventilator.

She is really back to her normal self and smiling and playing and giving kisses...she is just wonderful!! It is hard to not just scoop her up and hug her, but I still see her wince and I know she is not quite ready for that!!

Kaedy pics

San Antonio Pics
I was just listening to my church in Broken Arrow, over the phone again. I just love listening to my Pastor.

Here is today's update:
"I am redeemed from the curse of the law, Jesus having become a curse for me therefore my daughter does not experience 'severe and lasting plagues and miserable and chronic sicknesses' (Deut 28:59). My daughter is mine and she is not in captivity (Deut 28:41). HALLELUJAH!!!!!!"

She has no more pain in her body, no more sicknesses, no more surgeries, and her healing is quick and she is no longer held captive by the hospital!!! Her miracles are touching the lives of everyone who comes near her.

We haven't been to see Kaedy this morning yet but we are going in a few minutes. I called and they said that her arm looks better and she is doing well today. She is up to full feeds and is doing well with that....of course!!! SHE IS HEALED!!!! HALLELUJAH!!!

Saturday, August 20, 2005

I am still in San Antonio but Michael went home today. :-( My mom is here to keep me company (although she says it's just to see the baby!). Kaedy is doing better but she had an artery clog in her arm that turned her arm horrible colors. They took the lines out of her arm as soon as they saw the problem and it is slowly getting better (they are giving her heparin and putting warm compresses on it) but now it looks much like a tye-dyed arm. It hurts her to move the arm so she is not moving it much. The rest of her is moving quite a bit....her legs are up in the air (as usual) and her other arm is up and grabbing at everything. She seems very happy until she has to cough or until she moves in the wrong way and then she cries and cries. I think she has finally hit her limit on how much she wants to tolerate. She bopped herself on the head today and started crying whereas she would usually not have minded at all. Poor little thing. I can't wait to pick her up. Hopefully she will be ready for that by Monday. And we are still hoping she can go back to Tulsa by Wednesday, but I will keep you updated!!

We went on the river walk boat ride today. It was a very nice ride, about 35 minutes long, with a tour guide. The only problem was the tour guide sounded JUST like Squidworth from Spongebob. We saw some neat sites including some cool trees whose roots come straight up from the ground. (I took pictures which I will post later)

Okay, I am off to copy down a crochet pattern. I am tired of trying to make the same hat over and over so my mom suggested I make something else. I think it's a great idea! However, I forgot we don't have a printer hooked up so I am going to have to actually write down the pattern....ugh!!! I brought TONS of stuff to do while I was here and I have barely done any of it, but at least I brought a selection. I will have tons of time to do great things once Kaedy is home!! WOOHOO!! We are nearing the end!!!!

Tuesday, August 16, 2005

Thank you all for your faithful prayers!

Kaedy had a very smooth surgery with no problems. In fact, the nurse walked out and said that "God must be smiling down on this baby." (of course we KNOW that!!!)
These are the things they did for her:
1. They moved one rib from the right side to the left side
2. They moved the bottom ribs on her left side up to where they belong.
3. They detached her left side diaphragm and reattached it in the proper place.
4. Two titanium ribs were put in on her left side.
5. Her intestinal hernia was fixed

The doctors were very happy with the results. They are expecting her to come off of the ventilator before Christmas, but we are expecting it much quicker than that! :-) We have no information about how quickly we can get out of here, they said it just depends on her and how quickly she can come off of all the tubes and get back on her own ventilator. We are expecting supernatural recovery and a return trip soon! Best case scenario looks like about 3-4 days. Lots of people have been asking if she would come home or go back to St. John's in Tulsa. The plan is for her to leave here and return to the hospital in Tulsa. She would stay there approximately a week and then she would COME HOME!!!!!!! HALLELUJAH!!!! Please join us in thanking God for her supernatural recovery and the fact that she will be home soon!!!

I have another praise....several months ago a wonderful woman from ORU came to visit Kaedy - Sue Jester. One of the things we talked about was how to pray for the surgery. She counseled me to start praying then for spirit-filled people all around Kaedy down here in San Antonio. Our pilot on the way down was spirit-filled and so was the OR nurse today. I told the nurse, we have been praying for you to be here today for a loooong time. It was wonderful to share prayers with these people and the OR nurse even annointed Kaedy before the surgery as well....I felt awesome that she was in there during the surgery, speaking words of life over our precious baby.

Here are the pictures so far from our trip...they include pictures of Kaedy after the surgery but we don't have pictures of the xrays yet. We will try to get those so we can show you the amazing differences. I put these pics on OFOTO since we are away from home. There are three different sets...
Well Kaedy is in surgery right now and instead of sit there and fall asleep, I came up to the brand new library (opened yesterday...they must have heard I was coming!! LOL)to use their computer. Michael is antsy so he came up for a minute and then went right back down. So far Kaedy has been in surgery a little over 4 hours (including the 1 hour of anesthesia time). So far they have moved over 1 rib from the right side to the left side, attached one VEPTR device and they are starting to raise her bottom left ribs to the proper place. Then they are planning to put in the other VEPTR, detach and reposition her diaphragm and move her herniated large intestine. She will be completely sedated for several days so I guess this is the time when we will be sight

Speaking of sight seeing...let me tell you about our first few days...

We had an excellent plane ride. I was more worried about our luggage then actually coming here. We had been told that we had to be really careful to not bring too much luggage. I squished and rearranged and took stuff out of the suitcases until I had it down to their limit. When we got to the airport, the pilot came to get our bags and said "is this all?" Whew, first concern taken care of! The plane was very ended up being a lear jet. It was very comfortable and much quieter than I thought our ride would be. The ride took a little over 1 hour and Kaedy slept the entire time. She did wake up out on the runway after the flight because the wind was really blowing in her face, but she went right back to sleep.

We got a ride with the two pilots of the plane over to the hospital and found Kaedy fairly quickly. She was doing great and already charming everyone, of course. We got her all signed in and napping and then decided to head to the hotel so we could get settled. We knew there were trollies around here but had no idea where to catch them. A nice man from the information desk (who reminded me of my late Uncle Lee) took us outside and showed us. We went where he showed us but then realized he was wrong so we found the other trolley stop and caught the trolley soon after. I don't think we noticed a thing about the town on that ride. We had our luggage on the trolley (had been rolling it from street to street) and we just wanted off and to get settled!

We found the Red Roof Inn and got checked in and unpacked. We tried the laptop that a friend lent me and it started up fine but refused to log on. I was very disappointed but we decided to go back and see Kaedy and I was just going to pray about it and I knew it would work when we got back.

We went back and saw Kaedy for a few more hours and met many of the people taking care of her. We got her up and played with her and cuddled with her and then decided we needed to go find food and go back to the hotel to sleep. We thought Walgreens might have the part for the computer that we needed so we found where a downtown Walgreens was and got the trolley for there. By the time we got there, the store was closed for the night. We decided to walk around a little to try to find somewhere to eat. Unbelievably most of the restaurants were closed! We took a little alleyway and came upon some beautiful fountains. I thought we should go look at the fountains a little closer so we went to do that and stumbled into the Alamo!!! It is just sitting right in the middle of a bunch of high rise buildings! I told Michael, "that's the Alamo" and he said, "no it isn't." A few minutes later he realized it really was. We took a few pictures and as we were walking away we heard the same conversation go on with another couple...that really made us laugh!

We followed the fountains down some stairs and into the Hyatt Hotel. As we came out of the Hyatt we realized we had found the river walk. It is VERY DIFFERENT than what I thought it would be and is almost impossible to describe. It is below ground level, for one thing, and is very "rain forest" like. There are lots of ferns and exotic trees and flowers down there. We were there after dark and it was a tad slippery and seemed like a whole different world. We couldn't find anywhere we wanted to eat down there so we went back above ground and decided we would find the Denny's we had seen on one of our trolley rides. Unfortunately, we were very turned around and ended up walking several blocks the wrong direction! We found a grumpy German information man that directed us the proper way and to the proper trolley. We rode that to the Denny's and had a very nice, very late meal and eventually got back home by walking a few more blocks to another trolley. WHEW. We played with the computer a little more, trying to get it to sign on and it didn't work. We gave up and called it a night.

On Sunday, we woke up very was about 9 by the time we got up! We haven't slept that late in years!! My neice called me and hooked me up with the sound guy at my church so I could listen to the sermon on my telephone. I listened to all 2 hours of it on my phone and loved it. I had my bible out, I was taking notes, it was just like usual except I was snacking on nuts, pop and had my jammies on!! LOL I don't think Pastor would go for that on a regular basis....

We got over to see Kaedy about 1 or so and they were running a bunch more tests on her. We asked around where the nearest place we could get computer parts was and the closest anyone could think of was possibly the rivercenter mall right here in the downtown. While she was having some more tests done, we decided to run over there and see what we could find. (We went by Walgreens first and they didn't have any...their store was REALLY small and old and even had an underground stockroom!!) We had lunch at the mall, on the riverwalk with several pigeons (including one who liked egg rolls) and then found out that there was NOWHERE that sells computer parts in the downtown area. We asked and asked and kept getting told the same thing...we needed to go across town. We walked back to see Kaedy and the nurse there helped us call around to find what we needed and where to get it. She even helped us call the bus station, but they weren't doing what we needed to do. We ended up leaving Kaedy about 8 and going by cab to the nearest Best Buy and getting the part. We walked and walked trying to find a bus where we were, but there either weren't any or they weren't running at that time. We got a cab back and practically passed out on our bed, exhausted from all the running around town. We did manage to install the network card, though, and get the computer up and running Hallelujah!!!

Yesterday was much less eventful. We came to the hospital about 830am and we were hoping to see and talk to the doctors. We eventually did, about 630pm we had talked to everyone and decided to head home. The funny thing is, we met some ladies at one of the trolley stops and we were helping them figure out the trollies to get where they wanted to go! We are now the "experts" - that is scary!! LOL They ended up talking to us about the baby and telling us that they were praying for a miracle for her too. We got "home" pretty late and tried to find some dinner. We didn't end up eating until around 930 or 10pm and then we went to bed soon after.

Well that brings y'all up to date. We are getting used to San Antonio. It is not my favorite place by any means....but it is interesting. I can't wait to come home....I miss home! I really love Broken Arrow and can't wait to get back there: to my church, my home, my friends, etc. Now that Kaedy has had surgery, we need prayers for a supernatural recovery time. We are still believing in her miraculous healing because no matter what the circumstances are, God's Word has not changed. She IS healed. We are still rejoicing over her fully restored body and although Satan is trying to keep it from manifesting, Jesus has ALREADY paid the price and won the battle, so we have no fears.

Thank you for the prayers and keep 'em coming!!!

Monday, August 15, 2005

Well here is our lovely hotel in downtown San Antonio. It is nice and clean and I have no complaints about it. There is a trolley stop right in front of it, which is nice because the trolley and/or bus are our main sources of transportation right now!!

I was going to write about our trip, but I am sooo tired right now and we have to get up early in ther morning, so I will say my "blogging" for another time. I will just put up the update for anyone who didn't get it by email:

Well Kaedy finished all her tests here in San Antonio today. We talked to 3 doctors - Dr. Campbell, the orthopedic surgeon; Dr. Smith, the general surgeon; and Dr. Pinero, the pulmonologist. They were all very nice and they all were very impressed with Kaedy: her size and her development.

The doctors had lots of good things to say today:
1. they are saying Kaedy does not have Jarcho Levin
2. they think that she just has a few anatomical anomalies that caused some other problems.
3. they say it is not genetic, that it would be extremely unlikely to have any other children with this
4. they think she will soon be off the vent

We did find out that she has a herniated large intestine. They are planning on moving that back to where it belongs tomorrow during surgery.

Although the doctors would not say today whether or not Kaedy had been officially accepted into the titanium rib project, they all said (at one time or another) that she would have surgery tomorrow. They are supposed to give us the final word early in the morning and they are planning on taking her into surgery about 7am.

They are planning on doing the following things: (which could change during surgery)
1. taking two ribs from the right side to stabilize the left side.
2. implanting two VEPTR rods (the titanium ribs) - both on the left side, one close to the spine, one closer to underneathe the arm.
3. fixing the herniated intestine
4. detaching the diaphragm and reattaching it lower down

It is supposed to take approximately 5 hours.

That is all we know right now in the physical realm. However, we know the TRUTH and the truth is that she is healed.

The verse we have been standing on all along is Luke 8:50. "Do not be afraid, just believe, and she will be healed." We ARE NOT afraid and we completely believe that she IS healed. Thank you for agreeing with us about this and for your prayers. We praise God for her healing and that she is restored from head to toes. God is a good God...ALL THE TIME. He is not responsible for this, but we know who is....and he has been found out, ousted and owes us back the previous 9 months. HALLELUJAH!!! Please join us in thanking Him for her healing...

Having received Kaedy's miracle, in Jesus' precious name,

Wednesday, August 10, 2005

Well we got the stuccoing done. I will post a picture as soon as my wonderful hubby comes home with our camera. He should have already landed at our airport here and is probably on his way to his car. He is going to call us once he gets to his car and then we will be prepared for the big surprise! It was a much bigger project than I thought it was going to be, but, thanks to my neice, Brittany and Paula it wasn't so bad. ;-) I think it looks AWESOME now!! I decided it is just phase 1 because I have plans for much more, but it looks really good and at least it looks nice for when we have guests now!

The new lamp is REALLY bright compared to the old one. The old one had 1 60 watt light, this one has 5 60 watt lights! I am going to install a dimmer switch, maybe tomorrow and maybe when we get back from San Antonio, I will have to see how things go.

I had thought of sending myself a package at Red Roof Inn or checking in some luggage so that I could have more stuff while I am there but I am not planning on being there very long. I will take enough stuff for a week and we will go from there. If I wasn't such a fast reader it wouldn't be so difficult. ;-) I am going to do a Genesis study by Chuck Missler while I am there, though, and read a couple of other books that I have been wanting to read. My friend lent me a fiction book, too, which I will take with me for "lighter" reading! We cannot take much on the airplane. It is very small. Our nurse called it a cigar tube on wheels! We can each take a small bag. I will have to find a place to do laundry down there, if I end up staying longer than planned!

Kaedy said "dadada" the other day and now she says it consistently! She also says "hi" pretty consistently. She hasn't put her lips together yet, so no "mamas"!

I have a lot to do the next two days: get packed, get food for the girls and their sitters, get Britty's school plan written down, church tomorrow night, prayer time with the Lynns Friday night, aaaaah! LOL I know I can get it all done, no problem. :-) I just would like to sleep as well! HAHA.

Okay, I am going to get off of here and play some mindless game until Michael calls. Anything to keep me awake.

Blessings to all who read this!!!

Sunday, August 07, 2005

If I didn't know how the devil works, I would say that God was giving me some good stories this weekend already! I woke up early this morning and kissed my hubby goodbye then went back to sleep for a few hours. I got up about 7 and the girls got up soon after. I took Emily to Grandma's and Britty and I went to Lowe's to pick up stucco and supplies for redoing our kitchen while Michael is gone.....aka the BIG surprise! Sherria met us at the house at 10 and we got everything out of the kitchen and taped all the cabinets, windows, ceiling, walls, etc. We started stuccoing around 1130 or so and after a few trial and error things we got done about 2pm. We needed to go get another bucket of stucco to do a second coat, so we did that and got some lunch and came back. As soon as we started to put the second coat on, the wall started peeling. Soon an entire wall of stucco had come down including the paper in back of it and the first few layers of drywall. There were several places this happened so we ended up with only about 1/4 of the room remaining stucco'd. We needed to get cleaned up to go get Emmy and go to church, so we did that and after church we were going out to eat with some friends. That was perfectly wonderful and relaxing. Until we realized how much work we had left at home. Soooo, we left there, went and got Sherria's overnight stuff and went back to Lowes (3rd time) for some primer. We explained to the salesperson what happened and he was VERY helpful and gave us a primer to use to not have it happen again. We got home about 945 and started working again. We primed the messed up places, went over the still stucco'd places and then stucco'd the primed plaes when they were dry. We are now ready for bed. (more than ready.....) The neighbors are having a BIG b'day party with a live band and a pool party. It is STILL going on and it is after midnight. They told me they would keep it down after midnight. I think I am tired enough now to sleep through anything..... to the shower and then to bed. Got to be at church bright eyed and bushy tailed. We are going to finish it up tomorrow. I think it will look great!

Many blessings to all who read this!

Friday, August 05, 2005

Well Michael is off to Las Vegas tomorrow morning early for a business trip. It is Walgreen's biannual managers' meeting. He will be gone for 5 days and we are all sad. It just won't be the same around here without him!! We have a surprise planned for him for when he gets back, I won't put it on here, yet, in case he reads this in the morning before he goes. Anyway, it will take some work on our part, but it will be nice to finally have it done! :-)

Michael and I went on a "Kaedy date" again tonight. We went out to eat at Delta Cafe and then went and visited Kaedy. She was in a GREAT mood and was thrilled to see both of us at once. She is still teething and was enjoying sucking on a vibrating teether. We played a little while and then it was time for her to eat. Michael "fed" her through her tube and then I rocked her to sleep. It was a really nice time.

Thursday, August 04, 2005

The girls and I took Kaedy outside again today, for her second time ever. Rachel, the nurse who is going to go with us to San Antonio (not the original one, this is the one after talking to the dr), said we needed to get her used to being outside so she doesn't "freak out" next Saturday. So we took her outside with Kurt, one of the RTs. She did very well. It was about 98 degrees and VERY humid so we didn't stay out long. She closed her eyes for most of the time and scratched the side of her seat with her hand. (that's one of the things she does when she is nervous) I will take her out again tomorrow to gradually get her used to more and more time outside. They won't let me take her outside on my own, so I have to wait for a nurse or RT to be available. They have a critical patient right now up in ICU so the nurses don't have a chance to "play" with me. Hopefully there will be someone able to go out with us again tomorrow. After we took her outside, the girls and I played with her awhile in the play room. Brittany made some cool Tinkertoy creations while Emily played in the house and car they have there. Kaedra played with a Fisher Price Telephone. After about 15 minutes she got very tired and started yawning. I turned her toward me and cuddled with her and she went right to sleep. What a darling!! to do school and laundry.....a mother's work is never done. :-)

Wednesday, August 03, 2005

well let's see.....lots and lots has happened since I last blogged. First of all, Kaedy has two teeth!! She just got them this last week and they popped out one after another. They are a little tender for her, but she seems to like them. :-) She is trying to learn to blow kisses. She makes a kissy face, but does not know how to "let go" of the kiss. She is really showing her wonderful personality and just really blossoming lately. I can't wait for everyone to meet her. She SOO loves to be the center of attention! LOL We leave for San Antonio a week from this Saturday. Hallelujah!! it is time for some more miracles! :-) Our goal is to have Kaedy home by the Tuesday after Labor Day, if not sooner. Our doctor does not think that will be a problem at all.

I have been simplifying my life. (or attempting to) I got rid of my darling dog, Sugar. I adored her and she worshipped me, but she pooped everywhere all day long and I couldn't take any more of that. My house and my sanity are more important. It has been hard, though. I try not to think about it but then I do and I go on a crying jag for a little bit. Enough of that, I don't want to go on one now. I also had to give up volunteering to do the FAITH (my homeschool group) library. I have had the library in our attic for the last two years but I was very overwhelmed and not doing a good job keeping up with it. It had become overgrown very quickly and I needed help. Luckily some friends from the group came and got it and are taking care of it. Another Hallelujah!! A monkey off of my back!! I gave away our piano because it kept wanting me to put money into it. My idea was I would sow our piano for a new piano. Well it worked! Today one of my closest friends offered us her keyboard. Isn't she awesome???? Isn't God AWE-SOME??? Now I don't have the fuss of the piano that we had, but I can still get Britty lessons and she will be able to practice!! I still have many more things to simplify, but at least I am on the road.

We had Brittany's b'day party this past weekend. She had 5 friends over and there ended up being 3 Emilys, 2 Brittanys, an Averi and an Alison. It was a "spa" party and they did each other's nails and toe nails, they did peel-off masks, cucumbers on the eyes, computer hair makeovers and soaked their feet in salts. They stayed up until about 4am when they woke me up. I came down and told them since they had woken us up they needed to go to sleep. They were good girls and were quiet the rest of the night. :-) They are all very sweet girls and I love them all.

For Brittany's actual b'day we went to Big Splash with one of the Emily's (the one from church). They had a WONDERFUL time and I met a great family there while lounging in one of the pools. They have a little girl with CP that they are believing for a complete healing for. I ended up talking with her mommy most of the afternoon which was very nice, even if it was totally unlike me!!

We started 5th grade today. We are doing a new curriculum, it is AWESOME. I LOVE it!! It is called Ancient History: Adam to Messiah. It is from the Heart of Wisdom people. Today we got through 1 1/2 lessons and we really like it. We are going to be learning so much and big changes are happening now that Brittany is in the "logic" stage of her development. The only thing she is having problems with right now is she does not like to re-do any of her work. She is going to have to get used to that so she can learn to write papers properly. I know she will become accustomed to it, though, it will just take a little practice. She also needs a little more time on memorizing math facts. I figure she can really work on that while I am in San Antonio so that by the time I get back, she has them down pat.

Well off to bed for now....have to be ready for another school day tomorrow!!