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Friday, June 1, 2007

Hi All,
Our appointment went very smoothly today. Cassidy did an amazing job at her eye doctor appt today. We were a few minutes late as traffic was horrible on our way up to Swedish. When we got there Cassidy was very polite and hopped right up in to the exam chair. She was very chatty with the assistant and didn't even need mommy in the room with her. Pretty soon Dr. Heidar came out and we chatted and then she went to see Cassidy (who was 10 feet away). Cassidy was very good for the doctor and put up with the bright lights and eye charts. Dr. Heidar wants to see Cassidy back in 6 weeks. We are not getting the results we need out of the right eye. The solution at this point is to start patching her 1-2 hours per day. We are going to be very diligent about this and try to get Cassidy playing on the computer or reading during this time. Overall it was a good, or better than average visit. Compared to all of the rest of the visits this was the best we have ever had behavior wise just not news wise. I will keep you updated with how the patching is going.

On the Wish front. No news is good news at this point is what I think. We are waiting to hear from them. As soon as I know more I will post.

Thanks for your continued support and prayers.

Shannon

Wednesday, May 30, 2007 2:14 PM CDT

Hi All,
Just a quick update.

Last night our Make-A-Wish people came over. Our volunteers are wonderful!! We have Ken and Marjie working on getting Cassidy to spend the day with Rascal Flatts. They brought us a primrose plant and the girls got beanie babies. I have to say it was great to see my girls get on the floor and play with new friends. We are very excited. Cassidy will only talk about her wish, "her boys", and Ken and Marjie. Too funny.

I don't have very much to go on as far as when it will be. We will have more info soon.

I will post on Friday after our appointment.

Thanks
Shannon

Wednesday, May 23, 2007 12:01 AM CDT

Hi!

Here is the latest news on Cassidy and goings on around here. We are all doing really well.

Cassidy is working on learning about the United States. She has been playing with a puzzle from Leap Frog. She knows where Tennessee and Washington are. I am really surprised how well she has picked up all of the names and knows where they go.

The bigger news around here is that we have been contacted by our Wish volunteers. They are coming to meet with us next week on Tuesday at 6:30pm. We have 2 volunteers that are just the sweetest people. I think we will be filling out all of the paperwork and so forth and they also want to find out exactly what Cassidy she wants for her wish. She is still adamant with me that she wants to fly to Nashville and spend the day with Rascal Flatts. I do know that the Wish folks will ask her for another wish as they always ask for 2. I also know we are going to be placed on a waiting list for "the boys" as Cassidy so affectionately calls them. I don't know how many other kids are in front of us but I am sure we will find out. It also depends on the schedule that they are keeping as far as touring and so forth.

So that's pretty much all for now. Our next doctor appointment is on June 1st with Dr. Heidar.

I will update after our Wish folks have been here.

Thanks
Shannon

Friday, May 18, 2007

Hi Everyone,
Cassidy is doing WONDERFUL!!

I have so much to write today. I will start with our follow up appointments. We went in to see Dr. Song for Cassidy's wound check 2 weeks after surgery. All we had to do was get the bandage off of her back. It went very smoothly and Dr. Song stopped by and said hello and chatted with us for a few minutes. I was also able to speak with Dr. Song's nurse Susan. In the past we had been trying to get a network of parents and VEPTR kids together. I had proposed a picnic and Susan took the idea and ran with it. We are in the process of getting a day that works for everyone. I will let you know more when I know more.

On Wednesday we went in for Cassidy's 6 week follow up visit. It went very well. Dr. Song came in right on time and we reviewed her x-rays. After this last expansion we managed to get some correction in the curvature. Dr. Song's biggest concerns are her kyphosis and also her lung capacity in her right lung. The kyphosis is the front to back curvature which creates the hump on her back. He is currently working on some sort of solution. His plan is to get a CT scan in September right before her next surgery and then send it to the engineers that can make a full scale 3D model of her spine. Then they will be able to come up with more of a custom solution for Cassidy. Dr. Song's other concern is the right lung. It's really not expanding very well and in September when we go in for CT then we will also get a VQ scan done to measure how much capacity that lung has versus the left lung and then compare to past scans. Dr. Song believes that we will need to put another VEPTR (titanium rib) on the right side to help that lung. We are thinking that the surgery will be sometime in the spring of 2008. This will be a big surgery and we will be expecting to stay in the hospital at least a week, possibly 10 days.

During our visit with Dr. Song I did mention Cassidy's leg length discrepancy. He sent her down for x-ray to get good films of her legs and hips. After some careful measuring and chatting we have decided to make an appointment with his associate Dr. Mosca. We have seen him several times in the past and he is the doctor that gave us the diagnosis for Cassidy. I really like him and he has been voted one of Seattle's Top Doctors as well. Our appointment will be on the 25th of June. More to come on that front. My concern is that the right leg is not growing at the same rate as the left therefore leaving a larger limb length discrepancy. Right now as best we can tell from the x-rays it appears that it is about 2 3/4 inches. So more to come.........

In other news. We received a wonderful call the other day. The Make-A-Wish foundation called us! Cassidy was submitted to the foundation by Dr. Song's office. We have the confirmation letter that they will granting Cassidy her wish. Want to know what she wished for?? Guess!
She wants to fly to Nashville and spend the day with Rascal Flatts. The girls is nuts for them. Ever since we went to the concert and Gary (pictured on the right) called her "beautiful, beautiful" and "pretty, pretty" she has been obsessed. It's all she wants to listen to in the car all the time. I feel like we have a teenager already!! The next step in her wish process is to have the 2 Wish Volunteers come out and meet with us. I will keep you all posted on the goings on. Cassidy is very excited and has started calling them "her boys"! and asking when we can go see them. What an amazing girl we have.

The next appointment we have is a follow up visit for Dr. Heidar for her vision. She is adjusting well to her new glasses and the eye seems to be functioning well too.

I will update soon. Thanks for all of the wonderful support and messages in the guestbook.

Much love,
Shannon

Tuesday, April 3, 2007 8:30 PM

WE ARE HOME!

Cassidy is doing well. I will give you the run down of event happenings. After I posted last night I thought we could get Cassidy settled down and possibly off to bed soon. So I tried to get her settled in but her back was hurting. I asked the nurse if we could give her something for her pain. She came back and told me that they had liquid pain meds for her. Cassidy doesn't really do liquid meds all that well so I had to have the nurse call and ask for something that would melt in her mouth. Finally we got some and then she was feeling better. I got her settled down and off to bed about 10:30! Crazy. She just was so sure that she was going to miss something. I got to sleep and then the night began. We were up every hour to hour and a half. She had to pee. That is no small task as you have to get a bed pan out and her on to it...then wait...then empty and clean. This was all because they had her on a really high IV drip. The nurse didn't and wouldn't turn it down until this morning. Then the nurses also had to come in every 4 hours and do vitals and also every 2 hours to clear her pumps. So between all three of these things we didn't get hardly any sleep. I think if you add it all up we got about 3 1/2 hours total and not in a row.

Morning finally came and we were able to get some food. The breakfast tray came and had nothing on it that Cassidy wanted. I made the trek down to the cafeteria and got something for us. (Someone once told me that it is 1/4 mile down to the cafeteria, so make a round trip and that's a half mile!) After we had a good breakfast I got Cassidy up in bed and got her moving around. We rested until about eleven and then Nana Sue came up. Cassidy wanted to wait to do anything until Nana showed up. About a half hour later Nana Cherie showed up. They decided to go eat lunch in the cafeteria while I fed Cassidy and let her rest some more. Nanas showed back up and I had gotten Cassidy up and half way dressed. Next to come off was the IV. We also decided to add another bandage to her back as there was some leakage. We were all set to be discharged but they wanted to make sure that her back was not leaking stuff so we had to wait an hour. We decided to take a trip to the playroom. She had a great time and got to meet clowns, color, and play with bubbles. We had the entire playroom to ourselves. Nice! Then back upstairs to get a bandage check. All good. Off we went. Homeward bound. Cassidy did great on the ride home. Got home and got her down for a long nap. She had a good dinner and we are just finishing up watching our other show for the week, American Idol.

I am going to try and post an update in the next few days. Thanks for the calls, emails, thoughts and prayers.

Shannon

Monday, April 2, 2007 7:15PM

Hi Everyone,

Cassidy is doing really well! We got to the hospital around noon. They were running right on time! We got back to the room and ran thru all of the pre op stuff. Our eye surgeon made it over and chatted with us for a few minutes. Cassidy took her pre-meds really well. She went back well with the docs too. At this hospital they don't let you go back to the OR which is fine with me.

We were paged a short time later (all of maybe 20 minutes) and the eye surgeon was done and ready to head out. She reported back that the eye looks really really good and there is no more scratching on her cornea. As of right now Cassidys eye is open and doing well. She says it feels good. About 40 minutes after that we got another page and headed down to see Dr. Song. He said everything went as planned and that she was doing very well. He did tell me that we would be staying over night, which we knew. So off to wait until we got her room assignment and we could see her. I have to say Ella held up really well today. It's hard to keep a 17 month old occupied at the hospital.

We made it down to Cassidys room before she did. We only had to wait for about 10 minutes and she showed up. She looked really good and was alert. We got all settled in and started with apple juice. Cassidy has since had dinner and ate a goodly portion of pasta, veggies and bread. I have to say I think that this is the best time we have ever had of it. Things have gone very smoothly.....they should as we are old hat at this.

So now we spend the night and hopefully get discharged tomorrow morning sometime. Cassidy is watching tv and resting quietly right now. We are going to watch Dancing with the Stars in a little while.

I will update again in the morning if I have time. Otherwise I will update when we get home.

Thanks for your thoughts and prayers and also emails.

Shannon

Thursday, March 29, 2007 3:05 PM CDT

Hi Everyone!

So much has gone on in the last few weeks. We finally took Cassidy to see another eye doctor. He has seen a ton of kids and was really good with Cassidy. She seemed to really like him and after 2 hours of being there and many many set of drops Cassidy opened her eye. Really opened her eye. Dr. Shelly (the new doc) got a good look and verified that the contact lens that is being used like a band-aid was still in there. From that day on 3 weeks ago to today her eye has been open all of the time. No one has an explanation. We still have no idea what was going on or why the eye wouldn't open. I think everyone including Cassidy is relieved that we are back to some semblance of normalcy. Just in time for our next surgery. Crazy times around here.

This week we have been to the eye doctor to verify the contact is still there and get things set up for Monday. Then we went to Children's to have our pre-op appointment with Dr. Song. Things went well there. So the plan is for Cassidy to go in on Monday April 2nd to have her expansion and at that time Dr. Heidar will come over and pop that contact out and take a look at her eye. We may be spending the night depending on how well she does afterwards. This time is a bit different though as Dr. Song has not reserved an ICU bed. This is good and easier for all of us. The whole crew will be up at Children's on Monday so it should be pretty easy.

Please keep us in your thoughts.

Shannon

Wednesday, March 7, 12:32 PM PST

We are home!!!

Things went so much better this time. So here is what happened.

Got to the hospital around 6:15 and got all checked in. Then we waited. Found out that the first case of the day had canceled so that meant we were up. We were ushered downstairs to the waiting area and sat for quite a while. Finally they were ready for us. I will say that I had to be kinda pushy that we did NOT want any narcotics or steroids. This is what got her scratching before and we don't want that again.

I gowned up and took Cassidy back to OR #6 and held her while they put her under. Then I went back to the waiting area. Both nanas came up today, but daddy had to go to work so Ella came with us too. We waited, and waited and waited. Then after an hour they came out.

The eye doc says that her cornea (the clear part) is all scratched up and looks pretty bad. So it will repair itself but they had to put a contact lens in like a bandaid to help it heal. We have to go to the clinic on Friday and see how it's doing. She is not sure how it got this way but did say that everything looks really good besides the cornea.

Then we were taken back to see Cassidy. Only adults though. So I got to hold her and I finally got smart about this whole thing. I brought the iPod with Rascal Flatts on it so that's what she woke up to. I have to tell you it was so much better and smooth.......
I think it was a combo of a few things. Her favorite music, no steroids or narcotics and us knowing how to handle it all now. They moved us upstairs quickly to the outpatient recovery area and she did well. Wanted to eat and drink and get that IV out of her hand. By 10:50 we were discharged and in the parking garage!!! We decided to forgo the nasty cafeteria food and went to IHOP instead. I was very pleasantly surprised that they had pretty good food. After eating we hopped in the truck and headed home. I think we were in the truck less than 5 minutes and Ella was asleep.

Cassidy seems much better this go round. Her overall attitude is better and seems as if this all may soon be behind us. I hope for her it's all over soon. We have surgery on her back in less than 30 days so that will be the next hurdle.

Thanks for keeping us in your prayers.

Much love,
Shannon

Tuesday, March 6, 2007 1:40 PM CST

Here we go again.

So ..........We had the last surgery done on the 23rd of January. The lens went in well. Now here we sit weeks later. Six weeks exactly. Cassidy still can't open her eye. At first we thought it was her will. After many, many appointments we have determined that there is something that is bothering the eye and that's why it won't open. I have to tell you our experiences up to this point with this eye thing have been less than thrilling or even close to satisfying. I think all parties involved here are frustrated including and most of all Cassidy herself. So the decision has been made to go in one more time. Tomorrow morning at 8:15 to see if there is a stitch or something that is causing the irritation or reason for the eye not opening. While under anesthesia they will also check the prescription that Cassidy will need for her glasses. She should not be in any pain at all tomorrow and only be under for about 15 minutes. I really hope that this is the last time that we have to go to Swedish for anything. I know that are not a pediatric hospital but the service and staff is less than adequate. Our doc is good but she doesn't work for Swedish. In any case.....I will try to update tomorrow or the day after. We should be home by noon.

Thanks for the support.
Shannon

Our new picture is from our Meet and Greet with Rascal Flatts. We went to the concert on Sunday and I think Cassidy is starstruck.

Friday, February 9, 2007 12:39 AM CST

Hi All,
Sorry for the delay in updating. We have been to the eye doc several times. We have a new lens in Cassidy's right eye. The problem is that she is unwilling to open and use her eye. The doc is puzzled and so are we. I have now been doing eye drops every hour. Cassidy is getting very good at drops. If anyone has any ideas on how we can get her to use the new eye please let me know. We are not getting a clear picture of what her eye sight is so it's important to get a better idea and get glasses back on.

On a different note. A week ago we were at the doctors office and I had Cassidy's hearing checked. She can hear little to nothing out of her left ear and a little out of her right. Of course I called Children's Hospital to see what it takes to see the ENT. A clinic we have yet to see. They told me they need a written referral from our primary care and then they will review and call us. Just got the call today from our primary that they have approved but now waiting for a call from them to schedule.

It's been a very frustrating process over the last few weeks. With the loss of eye sight came depression. I think we are on the upswing but it is a very long slow process.

I will update again soon. We have an expansion on Cassidy's back scheduled for April 3rd.

Much love,
Shannon

Monday, January 22, 2007 12:16 AM CST

Hi All,
It has been a tough few weeks. Tough is not even the right word. The loss of sight for Cassidy has been incredibly difficult. We have spent a lot of time at home. She is doing well today and the eye has healed well.

Tomorrow morning we have to go back in. We have to check in at 5:30am. Her surgery is scheduled for 7:30am. They do have 2 lenses this time. Hopefully one will work. We are planning on an outpatient procedure. Let's hope that Ella holds up for a while. The most difficult part is going to be not feeding Ella because they won't allow food in the area for her. Tomorrow will be a challenge.

I really don't have very much to update.......I think I am just exhausted and don't have it in me to write much more. So I will update sometime tomorrow.

Thanks for your thoughts and prayers!

Shannon

Saturday, December 30, 2006 8:17 PM CST

We made it through the night last night. This morning Cassidy was still saying that her eye was hurting. We laid low this morning and then headed up to meet Dr. Heidar at noon. The clinic is not open on Saturdays but she met us in the lobby and took us up. It was not pretty as we had to battle Cassidy for about 45 minutes to get her to open her eye. She finally did and we were able to see that it looks pretty good. She is swollen but it's healing. So after we looked Daddy took Cassidy to the play area and I was able to chat with Dr. Heidar.

I wanted to see how long until we can get that new lens in there. She is wanting to be very cautious and wait to see how things go. We really don't know how Cassidy eye will heal so it's all just hurry up and wait again. A lesson in patience for us adults. I also wanted to make sure that when we go back in that they have more than one lens. Then of course more questions about insurance and billing and such.

I am really not sure at this point what is going to happen. I have to say that the experience at Swedish has been less than what we expected as a whole from the hospital. Our doctor is wonderful though.

Dr. Heidar does want to see us back on Monday at noon. She just wants to check the eye again and see how it's healing. Our biggest challenge is the meds that we came home with. We have eye drops that we have to put in 5 times a day at least that have antibiotics in them. We also have liquid meds that we have to give to her first thing tomorrow. So we have done the drops once at home and so far so good. I am cautiously optimistic that we will be able to get all of this done and over with for her sake before summer. I have to say this is much harder than back surgery. It tests your patience. I had to leave the girls sleeping at home with Daddy last night just to get out by myself and breathe.

Please keep us in your prayers and thoughts. I will post on Monday after we have seen the doc again.

Thanks

Shannon

Friday, December 29, 2006 7:33 PM CST

We are home!!

Cassidy did very well today. It was a very long day for us. We checked in this morning at 7:40am which meant that we were up at 6! Nana Sue was there waiting for us. After checking in and waiting around for a really long time (read 3 hours!), they took her back. Actually I got to gown up and carry her to the OR. I held her while they administered the anesthesia and she was off to la la land. The procedure was scheduled for 1 1/2 hours so we head to get food. We make it a point not to eat on surgery day as Cassidy is not allowed anything either. The cafeteria food leaves much to be desired. Children's does so much better in the food department. After a disappointing lunch we did some more waiting. Finally Dr. Heidar came out and told us that things went well but..........the lens that they went to put in broke before they could get it in. So basically she doesn't see better and won't until we can go back in and get it fixed. Here we have been telling her that she is going to see so much better and she wakes up with a patch and she actually will see the same or worse.

We were ushered back to recovery to be with her. I have to say I think this was actually harder because the anesthesia is lighter and so she was very combative and upset. It's hard to see your own child that way. After some calming down and a reassurance we headed upstairs to outpatient recovery. Uncle Beevo came to visit today too. Cassidy ate some crackers, applesauce and had some juice and then after waiting some more we were finally discharged.

We are meeting with Dr. Heidar at noon tomorrow and will have more info then. We haven't seen her eye yet but will when the patch comes off. She says it hurts and she says that she has a headache too. She just wants that darn patch to come off.........it itches. I am really hoping that we can get in as soon as possible.

I guess I am at a stopping point here. I don't really know what else to say. I will update as soon as I have more info tomorrow.

Thanks for your prayers!

Shannon

Wednesday December 27, 2006 10:12pm

Hi All,
I think this may be a lengthy post tonight.

When we were at the genetics appointment in August they suggested that we make any appointment to see the eye doc. They didn't say there was any reason to be concerned but thought that because about 50% of kids with the syndrome have eye issues then we should get her checked. So I called in August to the eye clinic at Children's. The next appointment that I could get was the beginning of March. Apparently they only have one doctor that sees patients there and are getting a new one but who knows when. So fast forward a couple of weeks. Three weeks ago I decided that we needed to get her seen sooner than that. I called Children's and got her on the waiting list for the next cancellation but they said not to hold my breath. I called the optometrist that I went to and asked if they would see Cassidy. They agreed and we went in three weeks ago. She did a very good job and wrote a prescription for glasses. She also discovered that Cassidy without her glasses on is legally blind. Her right eye has a cataract in it that is very very dense and the left has one too. So her discription is that her right eye gets tired and decides to quit working. Wow! That's an awful lot to deal with 7 weeks after surgery and right before Christmas.

Cassidy is such a trooper and has adjusted to her glasses very well. She takes good care of them. I can't believe how dirty they get though.

I then spent time trying to negotiate with Children’s to get her seen there as soon as possible. And for anyone that is asking themselves why we didn’t get her seen sooner let me explain. We were told that she was fine. She has been seen by many a doctor and no one have raised anything. Her primary care has said that it isn’t a big deal and especially with a kid like Cassidy who has seen so many docs she didn’t feel that it was something we should push if there was nothing there. Needless to say we have recently changed primary care docs not just because of this but it is a factor. So there’s my defensive rant.

Ok so seeing that it was impossible to deal with Children’s on this I called Swedish on the 18th of December. They had an appointment for us the next morning at 8:30am!!! Amazing! We went up and saw our new ophthalmologist, Dr. Heidar. Our appointment was long but the kids were troopers. Cassidy did a fabulous job. She got her eyes dilated and did a great job listening and following directions. Dr. Heidar confirmed that she has a very dense cataract in her right eye and also one in her left that is not quite as bad. The upshot of the visit was that she wanted us to start patching Cassidy’s “good” eye in an effort to make that right eye start working and seeing again. So we were off to try patching .

After we got home I waited a bit and then patched the good eye. Cassidy was very upset because she told me that she couldn’t see. I went and got the portable dvd player in an effort to get her comfortable. No go……….she couldn’t see 2 inches from her face let alone 5 feet. I immediately got on the phone to talk to the doc but ended up leaving a message. We talked the next morning and she agreed that the best course of action was to get Cassidy in as soon as possible for surgery on her right eye.

We scheduled her appointment for her pre-op for the 26th of Dec. and then surgery for the 29th of December. So we are going in tomorrow for an outpatient eye surgery to remove the cataract in her right eye. We should be going home the same day but it depends on how she does. The hardest part for me with all of this is the new hospital, staff etc that I am having to train on Cassidy and her medical needs. Not that she is super complicated but when you are used to going to Children’s all the time and everyone knows her it’s different. So we are set for tomorrow. I am going to update when I can. It is going to be a stressful few days I am sure.

I am sure I am leaving out a ton of info but I am tired and need some sleep. I will post more if I think of it later.

Please keep us in your prayers.

Shannon

Thursday, October 26, 2006 6:10 PM CDT

WE ARE HOME!!!!!

We actually got home last night at about 9:30 p.m.
I will start at the beginning. Monday we checked in at 7:15 am. This was the beginning of a very long day for everyone. Cassidy took her versed but not very happily. She doesn't do well with liquid meds so it was a challenge. She got a bit sick but not a big deal. The plan was to go in and get her expanded but Dr. Song also wanted to look at the upper site to make sure it was not eroding thru the rib where it is attached. So off she went to surgery at about 8:35ish. We went to the cafeteria to wait. We finally heard from the OR nurse that they had started and it looked as if they were going to have to move the top location. It was eroding thru and needed to be fixed. So he moved it down one rib and a bit closer to the spine then expanded it a bit. We waited and waited and waited. Then finally after meeting with Dr. Song we were sent to wait some more at ICU for her to get a bed. I think she was in surgery for about 2.5 hours and we were able to see her in ICU at about 1:30ish.

When Cassidy gets out of surgery her face is usually very puffy and she has a hard time talking. They intubate her and it makes her voice horse. So she wasn't happy about being in ICU. She doesn't like it when the nurses come in and there is no shortage of them on ICU. Then of course we have the constant stream of docs, interns, anesthesia, and pain clinic people. We got put in the back of the shared room on the floor. I have to say that this is the best stay in ICU we have ever had. The staff was great. We however got stuck with super disruptive room mates. After chatting with our nurse and the charge nurse we were able to move rooms to a private one. ICU is hard enough but doesn't need to be a bad experience. It's all about advocating for your child. So one night in ICU. We made it thru. This happened to be the first night that I have ever spent away from Ella. It was hard on me but Daddy did a fantastic job.

Tuesday morning orders were written to go to the surgical floor. After orders get written you sit and wait. Finally we got the go ahead at 11:30. Off we went to another double room. It was empty when we got there but that lasted for maybe 20 minutes. We got settled and unpacked. Shortly after our new room mate joined us. She was 15 and there with a broken leg that had surgery. I have to say that Cassidy is much tougher at 4 then her room mate. We spent the rest of Tuesday watching tv and resting as much as we could. Cassidy is doing much better with her fears but some of that still comes out when the nurses keep coming in and she is in pain. Tuesday night was hard as the nurses kept coming in and out and then there was some question as to how well the iv was working. It ended up being ok but was a hastle as iv team had to come down at 11pm. We made it through the night and had our ortho resident come in for our wake up call at 6am!

I should note that during all of this we had Ella at the babysitters house. Thank you so much Samanatha! What a lifesaver. Ella would go during the day so that Daddy could come up and visit and also get some work done.

Wednesday would be the hardest. We were ready to go home but the protocol was that she had to be up and around and go potty and also eat a meal and keep it down. We managed to go for a wagon ride down to the playroom and got some books. They also have a new outside area that is just beautiful so we went out and got some fresh air too. Then back up to the room to try and eat. I should also mention that after surgeries that are a bit longer like this Cassidy has a hard time keeping food down. The pain meds and the anesthesia work against us and make her throw up. She managed to keep a bunch of food down for snacks but they wanted a meal. Just when I was starting to loose hope about going home Daddy showed up to save the day! He came armed with pizza. Cassidy ate a ton and kept it down. Off we went to find our discharge paperwork. Dr. Song happened to be around the corner and came in and signed off. Then we had to wait for our meds. We had paperwork at 7 but pharmacy took an hour and a half!!!! Not like you can get disolvable morphine in a very small dose at your local pharmacy though. So pretty trying but we are doing much better today! Cassidy is happy to be home and so am I. Today is our 5 year wedding anniversary and we have just lazed around all day. I think we will celebrate next week after some healing goes on. We have follow ups in a week and a half and then 6 weeks out. I will be interested in seeing the xrays then. One other thing I forgot to mention is that Dr. Song seems to think that we have evened out her lung capacity but we won't know until 6 months from now. She will have to have another VQ scan to determine her lung volume.

Well that's about all for now. Thanks for all of the prayers.

Shannon

Tuesday, October 24, 2006 3:42 PM CDT

Hi All,
Just a quick update. We stayed in ICU last night she is doing ok. We are on the surgical floor. If you want an update call the room or my cell.

She is in room 3010 bed 2 at 206-987-2000 or my cell at 206-779-5349. If I don't answer leave a message.

We will be staying the night tonight again hopefully leaving tomorrow sometime.

Shannon

Sunday, October 22, 2006 11:08 PM CDT

Hi All,
Tomorrow morning we go in for expansion. Our checkin time is 7:15. Cassidy is the first surgery of the day. I found out Friday that Dr. Song has reserved an ICU bed. I was not anticipating this but hopefully we won't have to use it. Usually the way it goes is that she recovers after surgery for an hour or so and then they move her down to the general surgery floor. They want to make sure she can drink and eat, keep it down and go potty by herself. Past experience has shown that we are home by 7pm. It makes for a long day. A bit different this time as Ella is almost one and wants to go go go! We will have our hands full tomorrow.

On a different note.......Disneyland was a blast! Cassidy had so much fun. We met a ton of characters and went on a lot of rides. She had a magical time. Snow White is her favorite and she got to meet her. She even knew Cassidys name!

I will try to update tomorrow night if we are home. Otherwise I will update Tuesday morning. Please keep us in your prayers. Thanks for your support.

Shannon

Thursday, August 17, 2006 0:17 AM CDT

***Just a quick note about the photo above. This is within the last 3 weeks. I had professional photos taken by Ruth and this is one of many. She does an amazing job! *****

Wow!!! What a summer it has been. Cassidy is doing so well. It seems that we are almost normal around here. We rarely have doctor appointments anymore. The only thing that we have on our schedule is her upcoming expansion of her rib in October. It is going to be after we get back from Disneyland.

Cassidy is doing well in Tae Kwon Do classes. She has recently earned her orange belt!! She is so very proud of her self. Cassidy is also taking swimming lessons. I found a program that uses float belts and they really seem to be helping her. She has only been going for a month and loves it. Ella is also going to swim class but I get into the water with her and the babies don't use the float belts. It's really amazing to see both girls in the water having fun. I remember back to a year ago when Cassidy didn't even like to take a bath. Now we are in and out of the water several times a week. Swimming has also been a great family activity for us.

We have taken a few short trips this summer. We went to Cannon Beach, Couer d'Alene and Orcas Island. We have really been enjoying the private pilot license that Dave has. It's nice to be able to just go to the airport and go.

We are all really looking forward to Disneyland. We leave on the 7th of October. Cassidy is really into the princesses right now and wants to meet Snow White. We have a countdown and each morning it's a big deal to take a paper chain off to see we are that much closer to going.

That's pretty much it here. I will update soon.

Take care.

Friday, May 5, 2006 9:49 AM CDT

HAPPY BIRTHDAY CASSIDY!!!!


Today Cassidy turns 4! I can't believe how time has flown by. What an amazing girl she is becoming!

Things here are going well. Cassidy is doing well with her latest expansion. It seems to stimulate some growth everytime we go in for one of these expansions. Now we are up to a 3T in both pants and tops in most brands.

Cassidy has recently started Tae Kwon Do. She loves it and went to her first tournament last weekend! She won a first place trophy! I am also looking into piano lessons for her. So hopefully we will get those started soon.
Cassidy continues to love being a big sister. Ella is a lot more interactive now. Cassidy loves to snuggle with her in the mornings, feed her food and play with her. I was listening in the other night and they were on my bed and Cassidy had Ella laughing and laughing about something.

On a side note. At our 2 week and 6 week checkups everything was fine. We are not scheduled to go back until sometime in November. It will be then that we possibly will have to stay overnight again. They are planning on replacing her existing rib with a larger one as they do outgrow these. So after we come back from Disneyland then we will get ready for surgery.

I have to say it is harder in some ways now that Cassidy is older as she understands and is very scared. It's hard to expalain to her and I am sure very confusing as a small child. We are working on some techniques with her about pain management and anxiety management as well. The other thing that I have found with her is if we talk about it a lot and with a ton of advance notice then that lessens the impact on her. If any one has any advice from the trenches about this please pass it along.

We are off to have birthday celebrations!

Take Care,

Shannon Huff

Friday, March 17, 2006 6:30 PM CST

Hi Everyone,
We are HOME! We have been home since yesterday evening. Cassidy is doing well. In some pain but doing well.

Here is what happened yesterday. We were up at 5:15am and on the road by 5:45. I find that it is always easier to leave Cassidy in her pjs and put her jacket on and then into the truck. So we made it and checked in right on time at 6:15. I have to tell you as a side note the new clinic/check-in wing of Children’s opened this week and it is just beautiful. It makes it a bit harder to navigate the hospital now but so worth it. It was just a few minutes until we got called back. They tried giving her versed which is the loopy juice. She didn’t like it and spit most of it out and the rest got spit up. Finally the nanas arrived and Cassidy was much happier. I was pretty surprised they let all of us back in the small area but they did. Bonus for Cassidy! We were all only back there for a few minutes because they were ready for her on time. So off she went to fall to sleep with strawberry air.

We headed down to the cafeteria. I think we were all very hungry. It’s much easier to eat now that we have been through this a few times. It seemed like we were there for a very long time. I am told that it was short. Time seems to drag when your baby is in the care of someone else, especially when it’s a surgeon. We were paged and headed down to ICU. They always have a bed reserved for her as a precaution but this time we didn’t need it! ICU then sent us back to day surgery check-in. (This is where the hiking all around the hospital to get your exercise part comes in.) Dr. Song came in and told us all that she did a great job. That everything looks great and they managed to expand her just like they wanted to. The other great piece of news is that where the rib is attached at the top looks like it is holding. There had been some question as to if this remained intact or not. At her next surgery we will be discussing moving the top location a bit lower. They expanded her one notch. This is equivillent to about 1cm which is equal to about .39 inches. ( I couldn’t come up with a fraction here sorry). My experience with Cassidy is that it does stimulate some growth though so we will end up with another inch or so on top of that within the next 6 months. Currently before her surgery yesterday she was 32 ½ inches tall.

At this point we were waiting to get her room assignment. Cassidy was still in Phase 2 recovery. The nurse came down and told us that she was doing fine in the recovery area but it was going to be at least an hour until they could get a room for her. That poor nurse……Dave, my mom, Cherie and myself all told her that was NOT acceptable. Dave asked for the charge nurse. She came down and told us that one person could come down. By the time that I got down there she was pretty upset. She didn’t know where she was and what was going on. I sat with her for an hour and 20 minutes and they still didn’t have a bed ready for her. Cassidy was asking for Nana Sue at this point so I headed out to find her. After another hike around the hospital and a few calls we found each other. They had all moved down to the area where she was going to on the patient surgical floor. I went off to find Ella to make sure she was ok. I have to say Ella did great yesterday. She was awake for most of the day. Today she has been sleeping most of the day. Not a big surprise. After about another half hour she finally made her way down to the floor.

She did a great job. We had visits from clowns and a dog! Just what she needed. The doctor said that we could go home after she kept food down and went to the bathroom. We had to go slow with the food. This has been learned after many times of trying to hurry and get out and we end up having to stay longer as she gets sick. So nice and easy with some humor works. It didn’t take too long and we managed to get her discharged at 4pm. We got home and she wanted nothing to do with her liquid pain meds. This has been the case now for the last few surgeries so we don’t push it and just give her chewable motrin. I think she believes that all liquid medicine will make her sick. Now we don’t fight it anymore. I figure that if the pain is bad enough then she will ask for her meds. She rested yesterday evening and ate a little. Last night she had more motrin and slept well.

Today she is doing well. She has been up moving around. A little slower than usual but moving none the less. The day after is always a challenge for me as it seems she is very hard to get along with. Lots of no then yes answers and easily gets frustrated. Today Ella has very bad allergies. I have come down with what I believe is an ear infection and my husband has a sinus infection. So it makes it even harder now that we all have something going on. Today has been a day of taking it easy and rest. Cassidy really wants to go somewhere and wants to know when we can get out. She is very much like me. We will stay around the house all weekend and not do a whole lot or get a lot done.
Fine with me. I am still tired and will need through the weekend to get caught back up on my sleep.

We have follow up appointments in 2 weeks and 6 weeks. I will try to update before then. Thanks for your prayers and support

Shannon

Tuesday, March 14, 2006 8:09 PM CST

*******We have a 6:15am check-in time. That means she is the first surgery of the day at 8am. Just what we wanted!**********


Hi all,
Today we went to orthopedics to check in for our pre-op appointment. It was so nice to have my mom go with us. Makes it so much easier on me when I can have some help. Cassidy is doing great! She was such a champ at clinic today. She knew what to do and where to go and didn't even fuss when Dr. Song looked at her back. We are going in for surgery on Thursday (another expansion). I don't have a time yet. They don't call until the day before. I will post a time tommorrow.
The appt went so well today. We were in and out of there in an hour! Dr. Song is a little concerned about her rib and asked if they can make a second inscision to see if it has stayed put. If it hasn't then they will reattach it and put it a little lower on her back (this is at the top). Then they will go ahead and still expand her. If they do have to reattach then she will need to stay 2 nights in the hospital. Not really what I wanted to hear but if that's what we need to do then we will. Otherwise we will be discharged the same day! I did have a bit of a quandry about what to do with Ella. She is still nursing and Dave needs to go back to the office on Friday. I had the nurse call down and they said that nursing infants can stay!

Cassidy is pretty whipped up about surgery this time so we have been dealing with some fits. Not too surprising I guess. It's hard to see your baby so anxious. I feel like we are doing well though and she is wanting to participate more this time which is great!

I will post with a surgery time tommorrow and then again on Thursday if we are home. Stay tuned!

Thanks for reading

Shannon

Monday, December 26, 2005 1:18 PM CST

Happy Holidays!

We had so much fun with the girls yesterday! This is the first year that Cassidy has been so into Christmas. We are all doing so well here. Cassidy has adjusted nicely to being a big sister. She is so very helpful. I just love that in a few short months she will have a playmate.

I have scheduled Cassidys next expansion for the 16th of March. The last time that I spoke with Dr. Song he wants to expand her this last time with this rib and then in November of 2006 he will take this current one out. Then he will replace it with a smaller one that will be not so high in her upper body. The reason is that the skin is getting a little thin and he doesn't want to take any chances. She seems to be growing well for Cassidy. Little but progress and that's all we really are looking for.

As I mentioned before............Ella Grace Huff has arrived. She made her apperance on Nov. 9th @ 5:21am after 17 hours of labor. She weighed in at 7lbs 10 oz and 20.5 inches long. She is doing well and we just adore her. Cassidy is doing so well with her and wants to help all of the time.

Happy Holidays. I will update more often.

Lisa---Thanks for the guestbook posting. I would love to email or chat. Please email me with your contact info.


Sincerely,
Shannon Huff

Tuesday, September 13, 2005 11:37 AM CDT

Everything went well yesterday!

We went in and were at the hospital yesterday morning at 8:30am. No small feat with morning traffic but we were on time! Check in and processing went smooth. She was not real excited that she had to take oral versed. This just helps to get her relaxed and she does start slurring her words but it does help. She ended up spitting some of it back up on Nana Sue but oh well. Then they permitted us to go into the induction room and stay with her while they gave her the anesthesia.

She did great in surgery and Dr. Song was able to get her expanded one hole. Not totally sure how much we are talking about as far as inches but he is pleased. They ended up admitting her and taking her down to a floor. So by 11:45 she was awake and alert and HUNGRY! She did eat but most of it came back up. Of course that is very upsetting to a 3 year old that has so very little control over the day. We got her calmed back down and she managed to rest and relax for a while.

The nurse came in a took her IV out around 2:30 and gave us our discharge paperwork. All we had to wait for was the meds that we were being sent home with. The pharmacy was backed up and we were told that meds wouldn't be ready for an hour. We decided to take Cassidy to the cafeteria to get a bite to eat. She was wanting an apple and a bagel. So we get all the way down there go thru and pay and get to the table. Cassidy starts to act funny and then promptly throws up all over the place including on daddy. After getting some of the mess contained and padding the stroller with towels we headed back down to the room to clean up and wait for meds. Cassidy was again very upset and now stinky but luckily most of the sickies as she calles them got on her clothes not her skin so no need for a shower just a wipe down with soapy water. Daddy opted to go home after we got her cleaned and we finally got her meds and headed home.

Cassidy did great all evening and surprised us both as she was up walking around and playing with all of her toys. I have tried to get her to take her pain meds but they are liquid so she thinks that they will make her sick. She is just taking Motrin for the pain. Only woke up one time last night to ask if she could go wake daddy up and play. This was at 4am! I gave her more of the requested Motrin and she was back to sleep in no time. Up this morning at 7am and walking around. She is playing right now and seems fine. If I took her out you honestly wouldn't know that this kiddo just had surgery yesterday! Amazing!

She is now requesting my presence to come read to her so I will end for now. More updates in the next few days.
Thanks for your prayers and support.

Wednesday, September 7, 2005 12:13 AM CDT

Hi All,
Cassidy is doing well. She is getting ready for her 2nd rib expansion on the 12th of September. Just a few days away. Yesterday we went for her CT scan. She did have to have anesthesia but all went well and she was ready to eat right after she woke up. I was just looking her chart yesterday and she has grown 8 inches since November when her rib went in! How amazing is that. She is also now in 2T clothes!

The summer here is winding down and Cassidy is looking forward to going back to school in a week and a half. Our last big hurrah for the summer is the fair. That will happen this weekend. She is very excited to see all of the animals this year.

Cassidy is also very excited about the arrival of her baby sister coming in late October. It seems to be the topic of conversation at least several times per day. Every thing in the pregnancy has progressed well and I am ready for her to be here. Cassidy will proudly tell you that her baby sister will be named Ella Grace Huff and that she is coming at the end of October.

That's about all I have for updates right now. I will update after we come home from her expansion next week. It is just day surgery so we will not be overnight at all.

Hope all is well with everyone.
Shannon

Tuesday, May 10, 2005 10:18 AM CDT

Hi everyone!
I am terribly sorry for the delay in getting a new update on here. As you all know life gets away from us sometimes.

Cassidy had her first expansion of her rib about a month ago. I can't believe that they let us come home the same day. Really it went that well. Some pain meds and a prescription for a bunch of sleep and we were headed home. Cassidy is doing so well. It is so amazing how our kids can bounce back.

On the 5th of May Cassidy turned 3! It seems like yesterday that I was holding a baby and now I have a walking talking buddy. She really enjoyed her birthday this year and got a ton of really cool presents. We had a great small party here at the house as well.

On another note. Cassidy is going to be a big sister! Yes you heard right! We are expecting a new baby at the end of October and Cassidy is very excited. I will make sure when we find out the sex in a few weeks that I post and let everyone know.

That's really about all that has been going on here. I will post again soon.

Thanks for reading!

Shannon

Tuesday, March 8, 2005 11:21 PM CST

Hi All,
Sorry for the delay in updating. We have had a few setbacks over the last few days.

I will start with what is going on surgery wise with Cassidy. We were supposed to go in on the 3rd which would have been last Thursday. Earlier in the week I got a call letting me know that Dr. Song was going to be over at another hospital and not available for Cassidy. So the plan then changed to Monday the 7th. Fine.............well kind of. On Thursday after a completely normal day I laid Cassidy down for a nap. When I got her up at about 5:30ish she was very very hot to the touch. I proceeded to take her temp which came back at 104.1! Of course by the time that I got her up and stripped down, temp taken and armed with info then it was too late to call our doc. Ever notice how our kids when they get sick happen to get worse in the evenings when the doctor is not available. So I called the on-call and received a call back telling me to dose her with children's advil. If she was worse in the morning to bring her in. We succeeded in bringing her temp down a little. Remember worse at night and better for the doctor the next morning.
Of course we headed of to the doc. I really love our primary doctor. We are so lucky to have a great family doctor that sees all of us. After listening to all I had to say and checking Cassidy she sent us on our way with some amoxicillin. She thought possibly a mild ear infection.

Of course Cassidy had to share her bug with mommy. We managed to make it thru the weekend and then the bug moved into Cassidys lungs. This always scares me. She already has compromised lungs and to add some virus to the mix is enough to make anyone crazy. I took her back to the doctor on Monday. Our doc was not in and we saw a sub. Fine. He was very good with Cassidy and even made her smile. By the time we were done with our appt she told me that she wanted to stay at the clinic and work with the girls! (What a big change!) He told me to go home and if she got worse then to give her a nebulizer treatment.

Silly me. Thought we had nebs here...........nope! I called the on-call and they called some in for me. (Thank you!) I gave her a treatment last night. Seemed a bit better.

Today when we got up she sounded worse. The cough was deep. I gave her another neb treatment at 11 and called our doctor. She agreed with me that I should take her to the ER at Childrens.

We got up there about 1ish. Treatments, steroids, nasal suction, x-rays, more breathing treatments, IV and blood draw. The final diagnosis. She has croup that is possibly progressing into RSV (we won't know until tomorrow). She was borderline as to if they would keep her. They decided to send her home with some steroids.
She is now in her own bed. Not real comfortable but as best we can do here. It has been a very long day today. So that's what has been going on around here.

Cassidy's expansion is now set for the 7th of April. We will see if that date sticks. Sometimes with what we have going on this cough will hang around for weeks. I will keep you all posted as to what is going on in a day or two. Of course if we head back up to the ER and we are admitted then I will update daily.
Please keep Cassidy in your prayers.
Thanks for your support!

Thursday, February 17, 2005 8:05 PM CST

Hi All,
What a changed child I have! Yesterday it was a very pleasant experience with Cassidy at the hospital and we received a ton of good news.

I will tell you that I used to dread trips to Children's Hospital for Cassidy's appointments. Usually as we turned on to 45th she would know where we were going and start in. Sometimes crying mostly whining. This time nothing as we turned off ,partly because I think she gets it now that they are not going to hurt her and partly because her understanding of language has increased a ton. So we get there and walking down the hallways has in the past been crazy. Cassidy used to notice all of the badges and freak out thinking that they were going to invade her space. If she saw someone in scrubs, which is a common occurence, then she was over the edge. I did spend a nice chunk of time the night before telling her about the appt and had Nana talk to her too, so that may have helped. She was very polite and used her manners well during our appointment and didn't even fuss when we had to go for x-rays! It may have also helped that the x-ray tech had candy and both Liz and Dawn had beanie babies for her. Cheryl gave Cassidy stickers too.

Here is the great news. Cassidy was measured and weighed on the 17th of November. The day of her surgery. Now 3 full months later Cassidy has grown 4 1/2 inches!!!! She has also gained 2 1/2 pounds!!
Cassidy now stands 30 1/2 inches tall and 21 pounds!!! This is amazing. Even the office staff was amazed. Cassidy now is in 12-18 month pants and some 18 month tops, some 2T tops and also a size 5 1/2 toddler shoe. She is still in the less than the 5th percentile for height and weight for her age on the charts. I don't care about that but some people have recently asked me where she is at so I thought I would post it.

We also went and saw one of our "Titanium Angels" while at Children's. Madeline also has had the rib put in but now has a total of 3 of them compared to Cassidy's one. Cassidy was very cute yesterday with Madda as she wanted to lie in bed and snuggle with her. Cassidy is still talking about it today and really wants to go back to the hospital. Normally I would never take Cassidy to the hospital to see another child but this was a huge exception. Madda and her family live 7 hours away and we don't get to spend time with them very often. It was so nice to see Rachel and Jason(Madeline's mommy and daddy) and visit for a while. Cassidy was of course spoiled by Rachel as she got a rice crispy treat and cinnabon popcorn.

I am so glad that Cassidy is doing so well. It seems like it has been such a long road already. I have learned so much about the medical community. I have also learned how to be a very strong advocate for my daughter. I would NOT have it any other way. What a gift we have been given! I am continually amazed on a daily basis how much she teaches me.

I will post again soon. New pictures are coming too.
Take care and thanks for reading.
Shannon

Monday, February 14, 2005 6:23 PM CST

Happy Valentines Day!!

Cassidy went to school today and had her first experience trading valentine cards. It was really cute. Last week they all decorated boxes and today they all brought cards for each other. We also got to decorate cookies with frosting and sprinkles. Messy but the kids had a ton of fun.

On another note last weekend on the 5th, Cassidy decided that she was going to walk! CASSIDY WALKS!!!!!!!!!

Nana just spent a ton of time working with her and she finally decided that she would like to try (it has to be her idea and she needs a task like moving something) so now that is her most of the time preferred method of mobility. She still does do quite a bit of crawling but I don't carry her at all when we are at home. Today at school she actually help set up for snack and set both tables with plates, napkins and cups. She did it with very little assistance from anyone and walked holding on most of the time.

It is so nice to see these great strides in improvement. Now I can let the docs know. We do have a pre-op appt on Wednesday. I will try and update when I get home from that. It will be most of the day spent there as they want us to see anesthesia as well. Cassidy will have one more appt on the 25th for a CT scan and then we have her first expansion on the 3rd of March.

I have been told that it should only be an overnight procedure but who knows.

I will update after our appt on Wednesday.

Shannon

Monday, January 17, 2005 11:56 AM CST

I want to apologize for not updating the page more often. Seems we are just busy and life is happening without appointments.
Cassidy is doing well. She is getting more and more interested in the idea of walking on her own. I will tell you though it is taking a lot of work on my part. I have changed the rules with her now and I am not carrying her unless necessary. She is not real fond of this idea. We are also working on potty training and have been very sucessful every time we have spent time on the potty. Cassidy likes this idea much better than walking and everything is now potty talk (loudly in public).
We have our next appointments at the end of February for her expansion surgery in March.
Not much else going on except that we have decided to start painting rooms in our house. We just finished the hallway and plan to start on the kitchen next.

I will post again soon.

Thanks for checking on us.
Shannon

Tuesday, December 28, 2004

I have huge news! Some of you don't know our family and Cassidy very well. Cassidy has never taken a step on her own. Yesterday she took several unassisted steps! Cassidy WALKED!!!!!!!! I cried. This is such a huge deal for her. I am so happy. It would not have happened if Cassidy's nanas wouldn't have been here. She walked for nana twice about 4 steps both times. We will see if she plans on keeping this up and walking for me today. Nana also taught Cassidy how to get down from a standing position when there in nothing around her. We have all waited so long for this day. I am so pleased that everyone was here to see this happen. Daddy was home too! This morning Cassidy has been asking to go walk so that is our mission for the day.

We did have a wonderful Christmas. Cassidy got her red balloon and book from Santa. Santa also brought Cassidy a ton of presents here and happened to visit nana's house as well. We opened presents here Christmas morning and then had a bite to eat. Then we were off to go see the nana's. Shortly after arriving we started with the presents. After opening several it was very apparent that we were not going to be able to finish until after naptime. I think it was very overwhelming for Cassidy. Cassidy and daddy both went for naps and when they got up dinner was ready. We had a wonderful spread of food with more than enough to go around.
Cassidy was great at the table and managed to eat quite a bit. She is very fond of mashed potatoes and gravy. After dinner we finished with the presents. Cassidy got some very cool things from the nana's and Santa. Her favorite seems to be her new portable CD player with microphone and the Barney CD.

Well I am off to go walk with my big girl and listen to Barney.

Have a wonderful day!
Shannon

Thursday, December 9, 2004 9:44 AM CST

***There is still time to get your order in for a personalized Santa letter. See the link below this journal entry. Proceeds go to off set medical costs for the Coalman Family.***



We had our follow-up appointment yesterday. Things look wonderful. Cassidy and I made our trek to the hospital for her appointment with Dr. Song. I have to tell you it was quite adventurous driving yesterday. It seemed that everytime we got in the car it was pouring down rain. Of course our appointment required that I leave at the tail end of rush hour in the morning.

The first thing that we did was head to the cafeteria for a quick bite to eat. Cassidy loves the bacon that they have there so that's all she would eat. Then off to clinic. There was a very short wait in the waiting room. We were quickly wisked off to an exam room. Dr. Song came in and very quickly took off Cassidy's bandages. She was not very pleased with this and started right in with a huge fit. I had forgotten to ask after surgery if he had used disolvable stiches. Luckily he did and we don't have to worry about going back in to take anything out. Dr. Song seemed very, very pleased with the way Cassidy has healed. He has cleared us for putting Cassidy in a bath! Yea!!!

We did have to have x-rays, another not pleasant experience for Cassidy. Only 2 of them so it was very quick. We also had the same tech, which makes a huge difference to me as I don't have to school another person on how we get things done. Yesterday also happened to be rib kid day in the clinic. I did get to see our friends Rachel and Madeline (Tyler too) and we met some new people as well. Dr. Song then came back in and we reviewed Cassidys x-rays. He is very happy with her progress in the last 3 weeks. Dr. Song did say that he would like to expand Cassidy in 3 months. For those that don't remember the device that they put in is an expandable system. So he did say after her surgery that her bones were quite elastic. He believes that we can get some further height and more correction. The expansion is not as big of a deal nor is the prep and after care. The typical protocol is now maybe an CT scan a week before. It's only a 30-60 second procedure so hopefully no anesthesia. Then we will go in for the expansion which is a short procedure where they do have to make 2 small incisions. Then we will go to ICU and stay one night and hopefully go home the following morning. I am just pleased that Cassidy is doing so well and that we are all home for the holidays.

We are getting ready for the holidays around here. I think we are almost finished with shopping and are getting a tree in the next few days. Cassidy is getting more excited and continues to talk about lights, Santa and presents. Cassidy will tell you that she wants a book and a red balloon from Santa.

I do have a few updates from things that I have posted previously. The family that we met at the hospital, Lisa and Jim, lost thier daughter, 8 year old Kelsey on the 30th of Nov. We are deeply sadend by this news and we continue to send our prayers to thier family.
Please make sure you check in on Dan (the link is below this posting). There have been some developments with his cancer. I will let you read on his page but please consider checking into getting on the bone marrow registry. You could save a life. Our prayers and thoughts are being sent to the Coalman family as well.

I guess the biggest thing I want to get accross today is that it makes a huge difference to have a support system when you are faced with medical issues. I don't just mean with a child. (It could be with a husband, wife, brother, uncle, mom or dad. You get the point.) We have been truely blessed with the outpouring of support and are very thankful. I do know that there are other people that don't have what we do as far as support. Please remember that this is the giving season and if you hear of someone that needs help, even little gestures mean volumes. A dinner, a card, a quick phone call. It may not seem like a lot but it is what keeps a lot of us going and our spirts lifted. For those of you that are the primary caregivers, take a few moments for yourself. You deserve it!

Thanks for listening to my rambling today.

Shannon

Monday, December 6, 2004 9:13 AM CST

*** Please see the links below. The personalized Santa letters are to help defray family medical costs for Dan.***


Hello,
Sorry it has been a while since I have updated. Seems the days start to get away from me. Things here have been going really well. Cassidy is almost back to her normal self again. She has decided that she doesn't want to crawl anywhere and continues to have no interest in walking. I know this will all come in time. Some days this is super easy for me to accept and others not. Today is an easy day. My biggest thing right now is making headway with strangers again. I think I may have mentioned that we had made pretty good progress with new people. Cassidy was yelling at people in the grocery store and any other place we went. Before the surgery we had made good progress and then we went to the hospital for a week and she regressed. Some days I just dread going out to run errands. I will continue to work on this with her and hope for progress this week. We are going to go to the hospital this week though so we will see.

As I mentioned above we have an appointment this week. Wednesday at 9am. This appointment will be to take off all of the dressings. Ought to be interesting to see how it plays out. I do believe that Cassidy does trust Evan(our ortho resident), so I will see if he is available to help with the dressings.

We are getting ready for the holiday season. I think most of my shopping is done. I am really enjoying this time with Cassidy. She is getting into picking out lights as we drive now. "Mama, look, Christmas lights!". We will NOT be going to have Santa pics taken this year. Cassidy has made it quite evident that she likes to talk about him but is terrified of him in person. We have seen Santa several times in the last week or so and she says "no, no, no, terrifed!" and then proceeds to get hysterical.

On another note Dave and I had 2 dates this last week. For anyone that knows us, this is very rare. The first night we went to a work Christmas party and the second to a movie. It was nice to get dressed up and go socialize with adults. The new company that Dave is contracting for did a wonderful job with the party. Great location, on Lake Union, and wonderful dinner. That was last Thursday and then Friday evening we went out to a movie. Saturday we took Cassidy with us and went to a holiday open house. We had a nice time and saw several people that we don't see very often. We decided that it would be fun if we took Cassidy to look at Christmas lights after the party. She had a great time and her comments are too cute. Amazing how excitied she was to find them and then look at them.

Well I need to go get some work done around here today. Thank you to everyone that has been so supportive.


Happy Holidays,
Shannon

Monday, November 29, 2004 2:05 PM CST

Cassidy is on the mend!
Things are going well here. We had a wonderful long weekend. Cassidy got to go out a few times and Dave and I got to go out by ourselves. I needed that much needed break. It was nice to go walk around downtown with all of the mad holiday shoppers. Funny this time of year how pushy people get. I think it's sad actually.

Cassidy has been getting more active the last day or two. She is showing lots of interest in standing and wanting to be mobile again. Mostly she just sits around or wants to be carried. Yesterday I tried to take Cassidy to a housewarming party. It turned out to be kind of a disaster. Of course I had to carry her and everyone wanted to give us a hug or come pat her back. I had to run interference. We only ended up staying for maybe a half hour. Cassidy has such a hard time with new people or people we don't see that often. I don't blame her, it's just hard sometimes as a parent when you want to take her out. We had made some progress before the surgery but now she has digressed, which I am told is very common. I just wish she wasn't so people phobic for her sake. I can't imagine what it must be like to be in her shoes.

I have really been able to tell a huge difference in Cassidy's breathing already. Amazing.

That's all for now. I have to go get some things done around here.

Shannon

Friday, November 26, 2004 8:36 AM CST

Good Morning!
Sorry for the delay in my posting. Cassidy and I had to catch up on our sleep. I hope everyone had a wonderful Thanksgiving.

I will start with the night before Cassidy was discharged. It never fails that the last night is the most busy. At least that has been my experience. It started off with Cassidy getting oral meds and vitals at 10pm. I was then told that she had more meds due at Midnight. Ok so I figured that I would just stay awake. So in came Jen (the nurse) and hooked Cassidy up to her IV meds. That meant that Cassidy was awake again. Then another IV med and an oral med was due 1am. Ok by this time I am starting to get frustrated. I know that Evan will be in at 6am to check on us and let me know if he is discharging Cassidy. My sleep time is looking shorter and shorter. At 1am I get up to check Cassidy and it is apparent that her IV is leaking everywhere! Cassidy's nurse comes in and turns off the IV but now we have to wait for the call back from the on call doctor to find out if she still needs IV meds or if we can take it out. At 1:45am after waking Cassidy up again we take the IV out. At this point I take her vitals and relay them to her nurse and then move Cassidy to my bed. Just on time our wake up call comes at 6am. Evan says to go get packed, eat some breakfast and then we can go home. Luckily I had done most of the packing the previous night. We actually went back to sleep for another hour or so. Then off to the cafeteria to grab a bite to eat. Cassidy was great about this. I told her that she needed to stay in her crib and I would be right back with food. Now I say right back but you need to understand that it is a long ways to the cafeteria from our room. I commented on it the other day and one of the nurses told me they had measured it and it was a 1/4 mile one way. That means a half mile roundtrip. I came back as quickly as possible. Cassidy was excited about going home so she ate very little. After breakfast I took wagonloads of stuff down to the truck. Then more waiting. We were both ready to go but Cassidy's medications were not ready. Finally at about 10:30am we were sprung.

I realized that we were going to need milk so I called the Nana's and asked them to grab some for us. Cassidy was excited about seeing the nana's. My plan was to swing by and just get the milk and then head home. Once we got there though Cassidy asked to "go in please". How could I resist? It actually worked out well as we got feed lunch and Cassidy got to watch part of Shrek 2. For those of you that don't know Cassidy is now obsessed with Shrek. We only own the first one so I think santa may bring the second one this year. So after lunch and a movie it was apparent that Cassidy was very tired. Off to our home. Cassidy was very excited about seeing her kittys and her dogs. More than anything I think she was happy to snuggle next to mommy in bed. She was super excited to see her daddy when he came home. We spent most of the rest of the afternoon napping and then relaxing.

Thanksgiving day and Dave's birthday!
Of course neither one of us had gone shopping so I didn't have to get up and start cooking. One of our wonderful, amazing friends brought our meal to us. Funny thing, when our dinner was delivered we were still sleeping. It was like Christmas when I went out and got the box. A full meal! Klewin family we love you! Turkey, mashed potatoes, stuffing, gravy, veggies, cranberry sauce, pumpkin pie and fresh whipping cream! We couldn't ask for better friends. We spent all day just hanging out, taking naps and eating. Cassidy got to watch her first Macy's Thanksgiving Day Parade. She was very interested in all of the ballons and floats. I think we will watch the Seattle parade this morning. I want to also thank the Hill family for getting dog food for us the two days before Thanksgiving.

Today we will be doing very little again. I may decide to venture out for a few momnets with Cassidy but not for too long. We are NOT going shopping today. It's just too crazy out there for me. Mostly I will be unpacking and taking care of business around here today.

Cassidy would love visitors. Here is the deal if you are going to come visit. Please call me and let me know when to expect you, don't just come over. If you have been sick or exposed to anyone that has been or feel or think you might be getting sick please don't come over. The last thing we need is to end back up in the hospital. (I am very serious about this. If Cassidy gets a cold it may compromise her system and we will be back at the hospital.)

So that's about all here. I will try to post in the next day or so. We plan on relaxing this weekend. I hope everyone had a wonderful day yesterday!

Thanks
Shannon

Wednesday, November 24, 2004 4:17 PM CST

WE ARE HOME!!!!

I will post more later tonight. Off to take a nap.

Shannon

Wednesday, November 24, 2004 1:20 AM CST

Hi all,
Sorry for the late post tonight. We have had a very busy day! Looks like we are going home!!! I will be sure that I post as soon as we get home. Cassidy is unhooked from all of her wires and tubes. She still has the IV in her right hand but it's just in case. We have gone for several wagon rides today. I took her down to the cafeteria with her nana's to eat lunch today. She likes being out of her room and every time we come back to check in she wants to go again. I have made 2 trips to the playroom, a trip to the cafeteria, down to the 1st floor for coffee, up to the 4th floor to check on our friends and around the floor several times. I feel like I have walked miles today and probably have.

I am really excited about leaving here. I want to sleep in my own bed and have Cassidy in her own clothes. My experience with Cassidy is that she tends to bounce back to her regular self much faster when we get home.

Glad we will be home for Thanksgiving. It also happens to be my husbands birthday. (He will be 40.) Needless to say I don't think we will be doing much as I haven't been home and don't want to go anywhere. On top of the fact that it will be good for us all to just rest.

I can't say enough about how wonderful everyone has been. I had to call in a favor tonight as we were out of dog food. Thanks Hill family!

I need to get a few hours of sleep. Evan will be in at 6 for my wake up call.

Thanks for your support.
Shannon

Monday, November 22, 2004 10:45 PM CST

We have had a big day! So many positive things have happened today. Cassidy has been completely weaned off of her morphine and has enough fluid output that she is also off her IV fluids. Her IV is still in her hand but no tubes going to any pole. All Cassidy is attached to is her oxygen monitor on her toe, her oxygen, and her heart rate/respitory rate monitor(3 sensors on her chest). Earlier I managed to take her out for a wagon ride with out being attached to anything. We were out for almost an hour and a half. She is exhausted now.

Dr. Song, the orthopedic surgeon came down today. He thinks that we will probably be getting out on Wednesday. It is a slight maybe for tomorrow. However he did say that he would like to change the dressing that Cassidy has on so they can see the incision sites and make sure that they look good. I am thinking that the dressing change will happen tomorrow and then we will be discharged the following day. You never know though. Things can be so unpredictable here.

Cassidy is very anxious to go home. She has asked several times today if we can go bye-bye. I am ready to go home and sleep in my own bed.

I am so grateful to all of the people that have stepped up to the plate and come up here or delivered food to us, sent cards, presents and emails. I am also grateful to the encouraging words that keep showing up in our guestbook, and in my email.
Thank you for all of your support and prayers. Off to make my bed and get in my jammies.

Shannon

Monday, November 22, 2004 9:40 AM

Morning!

Cassidy is doing very well. We are in the process of weaning her off the morphine. She as at half of what she was at yesterday. Our next step is to get her on oral pain medications.

We are waiting for the orthopedic surgeon to come see us this morning. I know we are not going home today.

Yesterday Cassidy went for a wagon ride to get ice cream and to pick out another beanie. Funny she picked the beanie with the name of Fussy. Seems that is her disposition as she is coming off of the morphine. Cassidy also had her first non family visitor yesterday. Cheryl came up to see Cassidy and brought her a school picture that she has had fun looking at. This morning at about 3am we had another diaper leak so that meant me getting her out of bed while the nurse changed her sheets. Then Cassidy decided she would like to eat. I finally got her back into bed and asleep around 4:30. A relativly non eventful day and night for us. Not sure if I mentioned in my post yesterday but the drain got taken out yesterday. One less tube!

Well I need to get my stuff ready. My mom is coming up in a while so that I can go home and shower. I will post again later today.

Thanks for your prayers and support.

Shannon

Sunday, November 21, 2004 11:15 AM CST

Good morning.

We had an ok night. Cassidy had a diaper that leaked everywhere so we had to change of her bed and her and clean her off at 4 something this morning.

Pain services came in this morning and they plan on trying to wean her off of the morphine today. It may take a day or two. They should be taking out the drain today too. Cassidy is doing really well and wants to go for another wagon ride.

I did manage to get down to the cafeteria this morning. I have had my coffee and a bit of food now so I am better too.

Not much else going on this morning. I will post later today.

Shannon

Sunday, November 21, 2004 0:58 AM CST

Today was a great day! Cassidy has her left hand back! The IV was taken out earlier today. She also had her catheter taken out and was briefly off oxygen but is back on now.

Cassidy got to go for her first trip out of her room today in her wagon. It was a nice change for her and us. I feel like today was a changing day here. Cassidy seems so much better today and is really on the mend. I can't believe how tall she is now. We weighed her today and she has gained over 3 pounds. Some of this is water retention but some is just her putting on weight. Looks like we will need new clothes as I know she is not going to fit into anything when we bring her home. If anyone has any 2t tops that they would like to pass down they would be welcomed.

On a side note. Many of you know that Cassidys dad was laid off from his job a week and a half ago. He has a new job that starts on Monday! Now is my turn to brag a little about him. He has been under a ton of pressure this last week with job hunting and Cassidy. He is amazing dad and husband and is constantly wanting to make sure that I have everything I need to make my stay her more comfortable. Thank you honey you are wonderful!

I will post again in the morning. Seems to work best if I post twice a day. That way I remember what has happened and my posts aren't so long.
Thanks for all the guest book entries. They are truely appriciated.
Goodnight
Shannon

Saturday, November 20, 2004 10:00 AM

Good Morning!
Cassidy had a pretty good night last night. She did get her blood transfusion and does look better in color. Her blood was drawn about an hour ago so we should have the results back soon as to how her levels look now. I have to say we have wonderful staff this time. Our nurses are great and the resident orthopedic surgeon, Evan Ellis, is amazing! I really couldn't ask for a better team for Cassidy.

Cassidy did ok last night. It's hard when they come in and have to check on her every half hour during the transfusion. She did well and her nurses are great about being as hands off as possible.

This morning so far has been good too. Evan came by this morning to see how Cassidy was doing. I have been giving him a bad time the last few days because he is always here. Today he brought his wife, Emily with him! Evan gave the go ahead to take the catheter out so that is one less wire she has now! We are thinking that she may be able to have the IV taken off that left hand today too. On top of all of that we are going to see how Cassidy does with a decrease in her oxygen support today. The less wires the better and the closer we are to going home.

On another positive note this morning. Cassidy ate some of her breakfast! A few bites of egg and some peaches plus some milk.

I just was informed that we need to get ready to go down to xray. So I will wrap this up for now. If anyone would like to come up to the hospital please call or email me. I would be more than happy to have a few guests today or tomorrow. Please if you have been exposed to anyone that has been sick or you are sick don't come up.

I will post later today.

Thanks
Shannon

Saturday, November 20, 2004 0:54 AM CST

Hi
It has been a long day and not over yet for either Cassidy or myself.

We are on a regular floor now!!! This morning was kind of crazy. Cassidy decided to take out her other IV. With one already out and now the second one completely out that meant that she was getting no pain control. This posed a huge problem. On top of all of that this morning in rounds and with consultation to the orthopedic team following Cassidy a decision was made to give her a small blood transfusion. That was decided at 10am. It seems we have spent a ton of time waiting around today. They were supposed to come in and put new IV's in but the team was backed up. Finally a great nurse that we have had before, Jeremy, came over and got one IV started so Cassidy could be back on pain meds. Then more waiting. Somewhere in here they were supposed to type and cross Cassidy's blood. Type and cross is an effective way to match her blood type and the proteins in her blood to a donor. This lessens the chances of rejection. I was under the impression that it had been done and we were going to wait for several hours for the blood to arrive from the blood center. Also during this time we got moved to a regular private room on a medical floor. The room is nice and has great big windows and a really nice bed for me to sleep on. Plus it is a private room! Can you tell how important that is?

After a half hour on the floor it was discovered that no type and cross had been done and Cassidy's blood had not even been ordered. I was told that it can take 4-6 hours to get it delivered and then it will be transfused over a 4 hour period. We should have started at 3ish instead we started a hour ago at 10:30pm. That being the case our nurse will still come in evey half hour to check Cassidy but I will be trying to get some rest along with Cassidy.

The IV team was paged when we got to the floor as they still needed to put that second IV in for her transfusion. I was told that it would be a while so I left and went to find my husband in the cafeteria. While I was eating I spotted one of Cassidy's classmates from preschool and her parents. We spent a while chatting with them and updating each other. It was really nice to see a familiar face here. Back to the room we went and what do you know. While we were gone the IV nurse had come and stuck Cassidy several times. Nana was with Cassidy the whole time we were gone so she did have a comforting voice to read her stories and talk her through what was happening. Her IV went back into her left hand. Anyone that knows Cassidy, knows that she sucks her two fingers on her left hand. This is tough for her because now she has an arm board on and can't get the fingers into her mouth. No self soothing here.

Cassidy has been asking to get up or to be carried for the last 24 hours. Up until tonight I did not feel comfortable holding her. I did get to hold her tonight though and it has made a world of difference. She layed in my lap for 2 hours and during that time decided that she would like to try eating and drinking. This is the first interest she has shown in wanting either one. Cassidy had diluted milk, 1 1/2 saltine crackers, several spoonfuls of ice cream, a bite of chicken and several bites of potatos. I believe that she has offically turned the corner.

The transfusion finally arrived and we got her ready to go. As the transfusion was started I noticed that she wes getting cool and started to cover her with a blanket. Glad I picked it up because her transfusion had started leaking everywhere. Messy! The IV nurse came quickly and managed to save the line and rebandage her IV.

Cassidy is getting her transfusion right now! This should make her feel better. I am very tired so think I will go lie down for a while. I will try to post first thing in the morning.

Thanks for your support and prayers. Keep it coming.
Shannon

Friday, November 19, 2004 7:48AM

Good Morning!

We had a much better night last night. Cassidy slept and so did I. I feel great today with the exception that I need some coffee. We have shift changed and Cassidy now has a new nurse, Sharon. I will go out and participate in the rounds on Cassidy this morning. I think that she is ready to move to a regular floor. She is doing lots of moving around and managed to get herself into that all fours positon several times last night.

Our other event last night came at 2:30 am. Cassidy got very agitated for no apparent reasona and started to pull on things and really move around in the bed. The result of all of this moving and pulling was that she managed to take out her IV in her right hand. Cassidy also managed to take her oxygen off too. Her oxygen is just a nose canula so not a huge deal but she does not do real well when she is off of it. So then came the task of untangling her wires and finding out how much damage she had done. Not a ton but now we are down to one IV, the one in her left hand. It's amazing for how little she moves around, how tangled things get.

Not much else going on here this morning. I will post when we get moved and make sure I post the room number. I am still limiting the amount of visitors to her bedside and will continue to do so on the regular floor. Please email or call if you would like to request to come visit.

Thanks
Shannon

Thursday, November 18, 2004 7:18 PM

Hi everyone!
We are right in the middle of shift change so this make take a while for me to write and post. I may be able to post again this evening late but we will see. If you miss a post make sure you read the journal history, or if you are new to our story please read the history too.

Today has been pretty uneventful. Cassidy has slept most of the day. Right now she is in and out but not real awake. I participated in the rounds on Cassidy this morning. Rounds are mostly a bunch of medical speak that us parents can't understand. I wanted to see what they would say and what they thought about staying up here another day. So here we stay. I decided this morning after I had been spelled by nana and my husband that I would go home, shower and rest. On my way out I ran into the chief of pulmonology who had come down to see Cassidy. I went back with him to listen to his opinion. He seems to think that she is doing well and said that kids like Cassidy typically follow the path she has been on. The hoarseness she is experiencing is typicall too. He is pleased with her status and will continue to check on her in the next few days.

We are still in a shared room and Cassidy is developing a tolerance to noises or the morphine is helping her to do that. The other great thing that has happened today is that Cassidy has developed a trust with her nurse Johanna. I am very pleased that she is starting to realize that she is here to help. We have the same night nurse tonight too. Regina is a great nurse and has the same philosophy as Johanna that being as much hands off as possible. This stay is a little different from the last two for a few reasons. This stay Cassidy has an a-line which is a line in her artery so it measures her blood pressure. She also has a monitor for her temperature. Our last visits we have had to do manual blood pressure and temp checks every two hours. So this time is much easier as they just come in and check her machines.

A few minutes ago Cassidy rolled over and pushed herself up. Quite an amazing feat as she is on a lot of morphine and hooked up to a ton of wires. We quickly got her settled back down. She has yet to eat or drink anything but I am working on it.

They are showing "The Incredibles" in the playroom tonight. I saw a sign at the reception desk at ICU and asked what the deal was. The lady that works the desk managed to get one of the animators up to the room here to draw a picture for Cassidy. She was not super coherant for him but not to upset while he was here. Pretty cool what they do here for the kids!

Looks like they will discharge us down to a regular floor tomorrow. That will be good as then we can get rid of some of the wires and she will be more comfortable.

A few last notes. We were brought the most wonderful dinner tonight. Margit thank you so very much for the amazing meal. There will be enough for tomorrow. Amazing what a home cooked meal will do for you. Another friend of ours brought a wonderful sign up that the kids painted. Thank you Courtnay! Cassidy also got a wonderful beanie bear today from her pre-school! Cassidy is a beanie baby fanatic. When we go to the mall and walk by the card store she knows that's where the beanies are. That is all I have for now. I will update again tonight if I get a chance.
Thanks for your support and prayers
Shannon

Only took an hour tonight to write this posting.

Thursday, November 18, 2004 8:13 AM

Good Morning!
We had a touch and go night here. I am glad we are in the ICU even though there seems to be a constant stream of nurses, doctors and residents.
Cassidy managed to get way more sleep than I did last night. After they extubated her (took her off the breathing machine) she had a hard time calming down. It becomes a vicious circle for Cassidy.....here is what happens. She gets upset with all of the noises and comotion, then she starts to get worked up and cry, when she cries she hurts because she has had her ribs and spine opened up and she is breathing deep, then she is more upset. So you can see how we have to manage her pain and her anxiety on top of countering all of the other things. Cassidy does have a fever and they say this is normal. As of this morning she is on tordal for fever, morphine for pain, andavan for anxitey, zantac for ulcer prevention, antibiotic, and she has had several breathing (steriod) treatments too.

Our main objective today is to get Cassidy's pulmonary function stable. As soon as she is doing really well breathing on her own and not losing oxygen staturatio then we can get rid of the supplemental oxygen. At the point where they feel she is very stable then we will move out of ICU to a regular floor. I really do like the fact that we have a nurse that is only assigned to one other patient here in ICU but it is busy and noisy. It looks as though we may move later today but much later.

The pulmonary team will be around later today to take a look at Cassidy and then we will have a more accurate idea of what is to come today. Cassidy's orthopedic residents have come to see her already today as well as Dr. Song and our anesthesia doc, Sean. Ortho has given her the go ahead to start moving around! I can pick her up even, although she is resting very comfortably right now.

I am going to post later today. They are getting ready to round on Cassidy (where the docs meet at discuss patients) so I need to go listen to what is happening.

Thanks for taking the time to read my updates and post in the guestbook. Please continue to keep Cassidy in your prayers.

Thanks
Shannon

Wednesday, November 17, 2004 8:31

Hi Everyone!
We are doing well right now! I am going to give you a run down of the day today.
We decided to keep Cassidy up last night as late as possible and get as many calories in her as possible too. She wes up until 10:30, and her normal bedtime is 9pm. She was quite pleased though because she got to watch Shrek twice and stay up.
Dave and I were up at 5am this morning so we could at least get some coffee before waking Cassidy up to leave. At 6:15 we left the house and sailed to the hospital. To our surprise Cassidys nana's were actually here before us! We were called back on time and then the waiting began. Luckily we were given a nurse that knows us and has worked with Cassidy before. We were given a new anesthesia doc so that meant making him familiar with Cassidy and her needs. Then the loopy juice came. It's a pre-op medicine that makes Cassidy drowsy and quite funny. Yet again our frequent flier miles paid off and they did let all of us be with Cassidy while they did the pre-op check-in. Normally there are only parents allowed back with kids right before surgery and this time they let us bring back the nana's. Cassidy was very pleased about this. Sometimes I think she enjoys a bigger audience. All of our hard work with her and her stranger anxiety paid off during this time because she hardly made any hesitation. Her favorite doctor, Dr. Hopper, came to visit right before the anesthesia doc took her to the operating room. He actually walked with them so I am sure that and the medicine made it much easier on her.

Off to the ICU to get our parent pager and then to the cafeteria. We were also told by Nurse Pickles (that is really her name), that she would be paging us every hour with updates. With the red wagon in tow we were off to go wait for our update from Nurse Pickles. True to her word an hour later she paged. Our first update....at about 10:10am. Cassidy had done well with the anesthesia and they had gotten the first tissue expander out and were starting on the second one. Cassidy had no problems and everything was on track. We were told that Cassidy did have to have an IV put in her left hand. This is kind of a big deal as most of you know Cassidy still sucks her fingers on her left hand. Both of her hands had IV's and they did try to not put it in but sometimes things don't always go as planned.

Next update at 11am. Cassidy was still doing very well and the first part of the titanium rib was in. She told me it looked like another 2 hours. Amazing how quickly that time goes past when I am used to spending most of her waking hours with her.

Another update at Noon. She was almost finished and everything was still looking good.

Paged at a few minutes after 1pm. They were ready for us to go see Dr. Hopper and then Dr. Song. (Hopper is the plastic surgeon and Song is the orthopedic surgeon.) Dr. Hopper said that his part went very well and they good closure on the wound itself. Only the small incisions were made instead of the large ones. Dr. Hopper was very pleased with the way everything turned out. Then down to wait for Dr. Song and Dr. Waldhausen (he is the general surgeon). I think the waiting is the hardest part.

After what seemed like forever we were told to go met them in recovery. GREAT NEWS!!! Everything is way better than I personally expected. She did wonderful during the surgery. Here is the best news. The last time her curvature was measured it was 80 degrees. Now it is 30 degrees!!!!!!! We could all see the difference on the x-rays right away! Amazing what they can do. So she was still on the breathing machine (vent or intubated) and they were waiting to see if she was going to start wanting to breathe on her own. She ended up staying on the vent so when they finally let us come back to ICU then she was very sedated. We finally got back to see her around 2:30ish. The nana's were wonderful and went and got us some lunch which we gobbled down. The four of us took shifts, as only two people at a time are allowed back in the room. Cassidy was medicated but still agitated and not real pleased that there was a tube in her mouth.

Finally someone ordered an anti-anxiety med for her and you should have heard the sigh she let out. Oh and by this time they had taken her off the breathing machine. She is on her own now as of right now and doing well. She is really hoarse and her airway is quite swollen. We are managing to stay ahead of the pain and she is responding well to all of the people she knows and loves.

Now I am looking at the clock and noticing that between all of the checks it has taken me an hour and a half to write this. They will make sure she is comfortable tonight but they do come in every two hours and check her. Right now they are still concerned with how she is breathing. Cassidy is quite labored but in all of my experiences with her and surgery she is typically like this. Keep in mind we are at a teaching hospital and we do have residents that have never seen Cassidy and also don't make it a habit of reading up on her before they come in. Oh well. I am tired but will probably only get cat naps tonight. We are sharing the only split ICU room up here and are in the back so it makes for an interesting situation. The other mom that we are sharing with is very understanding and quiet.

Being up here at Childrens has made me realize how lucky we are with Cassidy. I met a mom earlier today that is and has been going through a very tough time today. Please keep Lisa and her daughter Kelsey in your prayers.

Thank you to everyone that has signed our guestbook. We are doing fine and don't need anything as of now. I will post again later either tonight or tomorrow morning.

Sincerely,
Shannon

Wednesday, November 17, 2004 5:18AM

Hi all,
Here we are. Today is the day. David and I both slept poorly last night. Not too suprising to me. Cassidy of course is still sleeping. I made sure that she stayed up last night and had a bunch of carbs for dinner. She knows whats coming today and we have made sure she is aware of where we are going.

Please stay tuned today for updates. We will be getting updates every hour while she is in surgery from a nurse that is in the OR with her. Her surgery is scheduled to begin at 9am and should last about 5-6 hours. I will try and update the page as often as I can today so please check back often.

One last thing I need to address. Please don't take this as rude, this is not my intent. I don't want any visitors to come up to the hospital today unless I have given you the ok already and you know who you are. Our main focus today is Cassidy.....not trying to entertain people who come visit at the hospital. Phone calls today will not be returned unless you are family. Email me please!!! In the coming days if you are planning on coming to the hospital please email or call first.......make sure you haven't been exposed to any one that has had a cold, the flu, etc. One last thing. Please no child visitors. This can be very scary for kids.

Thanks to everyone who has signed our guestbook. Your support means a ton to us. Keep up the prayers.

Thank you,
Shannon

Please check the photo page......I added new photos.....the pic on this page is from Carina's birthday party. Cassidy got to ride a pony! Her favorite thing to do in whole world.

Wednesday, November 10, 2004 7:51 PM CST

We are a GO for surgery a week from today!

Today we made the trek to Children's for all of Cassidy's final appointments. It was a really long day for us but we did have some company today. Cassidy invited her nanas to come to the hospital with us and of course they couldn't resist her cute voice saying "with us" over and over again.
So I had help today!!!! It's nice to be able to have more hands and more entertainment for her as I am sure she thinks I am boring after a while.

Here is what happened today. We got to the hospital and went to orthopedics first. They were not too busy and actually it is the least amount of people that I have ever seen in the waiting area. First was x-rays....not high on the priority list of things Cassidy likes to do (most likely at the bottom of the list). Luckily I had help in the form of 2 nanas. One to stay in the waiting room with all of our stuff and another to help in the x-ray room. The unpleasntness comes in when we have to strip her down and then hold her arms and legs. By this time though Cassidy is pretty much hysterical so the quicker the better. Today we happened to get one new tech and one that has seen Cassidy before. The one that had seen her before knew the faster the better and was very quick and professional. When we came out of x-ray Liz and Dawn had a baton with streamers on the ends for Cassidy. Then back to the room to wait for the doctors.

Dr. Song and Evan came in to do Cassidy's history and physical. All that really happens for this is a explanation of all the risks of the procedure and a few basic questions about diet and health. I have to sign a waiver that states all the procedures and risks. Dr. Song explained the procedure and told us that Cassidy will be the first patient of the day. This is great news. He told us that she will probably be in the operating room for 5 to 6 hours total. Several other great pieces of news also came out of this appointment today. Dr. Song told us that her incisions will be much smaller than orginally planned. The original plan was a large quarter circle on the top half and a vertical incision on the lower half. Now we are planning on just two small incisions (about 2 inches). This is great news as the chance of infection go down and Cassidy will heal that much faster. Our second great piece of news is that Dr. Song is going to try and make it a one night stay in the PICU. (For those that don't know it's the Pediactric Intensive Care Unit) In PICU they come in for vitals every 2 hours. Not a lot of rest happens for patients or parents. PICU also only allows 2 visitors including parents in her room. If I am there than only one other person can come back and they enforce this very strictly. On top of all of that great news we also learned that her stay may be shorter than expected. Initally we were told that she would need to spend 2 weeks inpatient for recovery time. Now as some different things have happened with the FDA approving the device the stay can be shorter. So we may be home before Thanksgiving. Yea!!!!!!!!

After we finished in Orthopedics we headed down to the cafeteria. This always proves interesting for me. Usually I have to juggle Cassidy in her stroller or wagon and the tray. Challenging to say the least. Today it was so easy! Nana sat with Cassidy and I went and got lunch. After lunch we were off to Anesthesia Clinic.

Anesthesia clinc was busy. I had forgotten to bring Cassidy's chart with us to clinic so back up I went to Ortho. I feel like I walked miles in that hospital today! The purpose of anesthesia clinic is to get Cassidy's vitals and establish a baseline for her, make any special notation about allergies, and explain what will happen on surgery day. After I brought Cassidy's chart back down to anesthesia I asked how long the wait was. One of us (me or the nanas) made the mistake of metioning the playroom and Cassidy was obsessing about going there. I was told that it would be at least 20 minutes. I then asked if it was necessary for Cassidy to be there as they just most of the vitals upstairs. Off she went again to go check. When she came back she had one of our favorite nurses in tow. Lorraine took off her white coat and hid her stethoscope and walked over to where Cassidy was and did a quick listen to her lungs and heart. That was it! Our frequent flyer miles in anesthesia finally paid off!

Off to the lab we went for our last appointment. We had bloodwork done last time when we came in for Cassidy's MRI and it did come back slightly irregular. That was the need for the finger poke that sent Cassidy into hysterics again. Now we could finally take her to the playroom! Cassidy loves to play in the play kitchen area. In fact this is the only place she ever wants to play. I have tried other things but she is really only interested in playing with the plastic food. I think Cassidy was pleased that there was someone other than mom to show the food to and that would interact with her.

All in all it was a pretty good day with great news all around. Thanks for all of the support, love and prayers.

Shannon

Saturday, November 6, 2004 10:19 AM CST

Hi All,
We are in the final stretch now. Only one appointment left and then we are set. The last week and a half has been super busy. I have been fighting with the insurance company to get Cassidy's surgery approved. We finally got the approval but I do have to say it was only after we threatened legal action. Why would they approve the tissue expanders and all subsequent inflations knowing full well it was prep for the titanium rib? I feel so much better knowing that all we have to get through now is one last day of appointments.

I do want to let you all know that we are asking people to bring dinners up to the hospital for us. Two reasons for this .....you can only eat so much cafeteria food and it gets super expensive. Here's the deal. I am asking for people to bring a homecooked, microwavable dinner for 2 adults to the hospital. Make sure if you bring any dishes you would like returned you mark them well with your name. We don't have any ovens only microwaves. You are more than welcome to come anytime during the day. We are not picky about our foods and have no allergies just please NO alcohol. So if you would like to sign up please email or call me to let me know. Right now we are expecting a mandatory two week stay.

I am going to try and post pictures of Halloween today too. Cassidy had a great time! I hope she doesn't think that it's a three day event though. Last Friday we went over to Magnolia (it's an area in Seattle) Village and she got to go to all of the merchants and ask for more, more, more candy. The great part about going over there was they close off the street and hundreds of kids show up. On top of the fact she got to spend some time with one of her nanas. So then on Saturday we went to a birthday party for Carina. She is 3! We made the trek (100 miles roundtrip) out to the Coalmans house. Kris rented a pony for the party and of course that was a huge hit with all of the kids. This is probably one of Cassidys most favorite things to do in the whole world is ride ponies. She refuses to wear the seatbelt that is on the saddle but does a great job staying up straight and in the middle. Our friend Trish has the ponies and was the one who came out with Willow that day. She commented how well Cassidy was riding and that she was very impressed with the progress she has made. Yea!!!! I can't wait until we can start her lessons again with Trish. Then after the pony and all of the party fun and eating the kids all got treat bags. More candy! Sunday we decided to take Cassidy to a few houses in our neighborhood. It ended up great and by the end (we only went to 7 or 8 houses) she was really getting into it and wanted more. She could have kept going for at least another hour. It was cold and I figured that with all of the candy we had she didn't need more. She quickly forgot about it once we were inside and only wanted more candy from her bag. Next year ought to be even more fun!


So that's about all that has gone on here. I am just trying to get my self mentally prepared and I have started making a list of everything I need to bring with me. I am also trying to come up with a plan for Dave's birthday which happens to fall on Thanksgiving this year. I think we will celebrate early before Cassidy goes in.

On a side note please as you are saying your prayers for us include the Coalman family in your prayers too. Please visit www.caringbridge.org/dc/dan for more info. They don't live in DC as the address might suggest, they live here in Washington.

Thanks for your support
Shannon

Kris-Thanks for being my sounding board
Margit-Thanks in advance for your help with meals

Thursday, October 28, 2004 3:37 PM CDT

The last two days we have spent more than enough time at Children's Hospital. Yesterday we had a VQ Scan. This is so the docs can see what kind of lung volume Cassidy has. It's also so they can see if one lung is getting more oxygen than the other. Unfortunatly they don't interpret the results right then and there so we won't know what the results are for at least a week. During the scan they only have one poke but Cassidy moved and she had to start over. Her foot is pretty bruised up and sore from both pokes. After we finished the scan we went to the playroom. This is really a great place for the kids. They have pretty much anything that kids want to do. Cassidy's favorite is the play kitchen. After playing for a while Cassidy decided she wanted to eat so we managed a trip to the cafeteria for a quick bite.
Next on the schedule was the pumpkin patch with pre-school. It was the first all school fieldtrip. We drove out to Remlinger Farms. I personally enjoyed the drive out and back as it is through beautiful countryside. I ended up putting Cassidy in her stroller as I didn't feel like carrying her for a hour and a half. Needless to say she was not impressed with my decision to push her in the stroller. So off we went with the tour......most of the rides and activites were not open. There were several things that Cassidy couldn't do like the hay jump and climbing the fort. No big deal....there were plenty of animals to pet. We did get to ride the train and Cassidy loved it. The last thing we did was pick pumpkins. Not in a field though......just out of a large pile. By the time we were done all of the kids including Cassidy were beyond being done. It was a lot of walking for the kids and in and out of the stroller for Cassidy. On top of all of that Cassidy had been up since 7am with no nap. When we finally made it home Cassidy decided she was not taking any nap and wanted to be cranky for the rest of the day. She ended up going down to bed with no peep and went right to sleep.

On to today.
Another morning of up early to get to the hospital. Today we went for CT, MRI, Echo and EKG and blood gases. Wouldn't you know that I got stuck in traffic and was a few minutes late. I realized that I never got the paperwork for Cassidy's blood gases draw. It ended up being ok and something that is pretty routine. It was requested that I bring Cassidy into CT and stay with her until the anesthesia took effect. I went back to the room across the hall and waited. I got some knitting done but it is busy and there was a ton of activity in the hallway so I people watched most of the time. CT went fine and she then moved to MRI. In the middle of MRI I overheard one of the nurses call to find Echo and EKG. Both of them told her that Cassidy was not on the schedule today. Nice! We have had this appointment for 3 weeks now. She ended up convincing them to come down now and get it done as Cassidy was still out. The deal is they need to get an accurate reading with her at rest. As most of you know that would not be possible if she was awake as she is just to scared of new people. I did get to be there as she was waking up so that was good. We then proceeded to our cardiologist appointment. Good news! Cassidy's VSD (a very small hole in the heart) was gone! One clinic we don't have to visit anymore. Dr. Lewin did tell me that her blood gases were not normal and that we should have our other docs alerted right away. He didn't seem to think that it was an urget or health threatening issue but seeing as we are getting ready for surgery we just need to have our bases covered.
So that was our two days. Cassidy is now taking a nap and I don't expect a ton of activity for the rest of the day. She did really well and we are working on some new techinques for her anxieties too. I finally feel like we are close with a solution for some of the health issues we have been facing.
I think the next thing we have is a flu shot next week. A full set of xrays is a few days later.

I do want to find out if anyone would be willing to bring a meal (dinner) up to us. Please let me know if you would like to sign up. It would have to be a meal that could be reheated in a microwave. Please email me for more info.

Also just wanted to address this. When we are inpatient at the hospital I am going to limit the amount of visitors that come up to the hospital. I am going to also request that no children come up to the hospital either. Not that I need to justify my position to anyone but here are my reasons. The first is that I need to focus on Cassidy and the less traffic the better. Anyone that has been around any person that has been sick, has/had (in the last 24 hours) a fever or any cold or flu symptoms may NOT come visit. Cassidy will be very suceptible to anything and I don't want to prolong her stay in any way. As far as kids go this can be super scary to see another kid hooked up to machines and in pain. I will not be returning phone calls unless it is urgent. I will be available via email and will be checking it several times a day. Please make sure you check the website here for any updates. I will update everyday we are inpatient.
Thank you all for you support.
Shannon Huff

Saturday, October 16, 2004

I just wanted to let everyone know where we stand in our holding pattern for Cassidy's surgery.
There are a few things that we need to have done before Cassidy goes in for the Titanium Rib. (If you want more info on the rib go to www.veptr.org) Here is the list of things that need to be done as of now. She needs bloodwork done, CT Scan, MRI, VQ Scan, Echo/EKG and a full set of x-rays.
Here are the dates that have been set.
October 27th @ 8am VQ Scan - They are going to measure the O2 saturation levels in her lungs. She will be awake for this procedure but I will stay with her the entire time. Total this procedure should last 40 minutes.
October 28th @ 6:45 That is what time we will need to be at the hospital to check in for MRI, CT and Echo/EKG. They will also pull her bloodwork thru her IV. Seeing as Cassidy can't be still for these she must be sedated. Then we will have an appoinment at 10am with Dr. Lewin (Cardiologist) so he can take a listen to Cassidy's heart and hopefully they will have the report from EKG for him too.
November 10th @10:15 We have x-rays, pre-op where they will check her all out and do a history and physical and then we have Anesthesia clinic at 1pm.
November 17th Surgery day. We haven't been given a time yet. I would be willing to say early though. Cassidy will be number 21 at Seattle Childrens to get the rib.
I have already been told that we will be staying in the ICU for at least a few days.
I am going to be really upfront about this. I don't want a ton of people coming up to the hospital. At least that is the way I feel right now, it may change. Cassidy is very prone to getting any bug and that is the last thing that we need to be worrying about. I also know that ICU is very limiting on how many people can come in and out. Only 2 people are allowed back at any time.

Besides all of the medical stuff Cassidy is doing well. She has started pre-school. We are attending Des Moines Co-op Preschool and she loves it. Next week we will be going for school pictures (I am working on getting pics uploaded). Then the same day we go for the VQ scan we will be heading out to the pumpkin patch with the school. I will keep you updated.

Thanks for your prayers and support.
Shannon

Friday, October 1, 2004 10:27 AM CDT

Hi All,
Sorry for the delay in posting this update. Cassidy's expansion went well. Our appiontment was at 1:45 but the ended up not taking her back until almost 4pm. It did go well. She took a little longer waking up than usual but that didn't seem to be a problem. One of her regular nurses brought her back to me. It's nice that I am starting to develop some relationships with some of these nurses. If I know who they are and can chat with them on a more personal level then it seems Cassidy is more comfortable. Also the fact that they know to have as little contact as possible with her helps too. They gave her another dose of Tordal before we left. My experience with this is that it makes her super grumpy and very irritable. The ride home with Cassidy after an expansion is always tough. She hasn't eaten or had anything in her system and is not real interested in either one for several hours after the anesthesia has worn off. She is also very sore and grumpy. We made it home about 6ish and I decided we should have pizza for dinner. It happens to be a favorite of Cassidys. She managed to eat quite a bit and then it was time for bed. The following day was touch and go for Cassidy as her expanders are right on her shoulder blades and it hurts to move her arms a whole lot. I can tell you that since we have been going to preschool that Cassidy is really showing a big interest in wanting to walk. She wants to try and walk everywhere.
It looks like everything is a go right now for the big surgery. She will have to have an MRI, CT scan, Echo and EKG before we go in for the big surgery. They also want a full set of xrays. So that will be happening over the next few weeks. We are hoping that she can have all of them done in one day as she will need to be sedated for these procedures.
Things here are good today. Cassidy is back to her regular self. Please feel free to email me if you have any questions.
Take care,
Shannon

Tuesday, September 28, 2004 11:59 AM CDT

Hi All,
Today we go in for Cassidy's last expansion on her tissue expanders. Our appointment is scheduled for 1:45. I don't anticipate being home until at least 5pm or so. I will post when we get home.
Thanks for your thoughts and prayers
Shannon, David and Cassidy

Sunday, September 5, 2004 2:48 PM CDT

Hi All,
As I promised here is the background info for those of you I have not updated in a while.
Cassidy was born with a genetic condition called Conradi-Hunermann Syndrome. It affects many different areas one of which is her spine. As a result Cassidy has severe scoliosis and kyphosis. This is curvature of the spine both side to side and front to back. Needless to say we have been followed by some time by orthopedic surgeons. At the beginning of 2004 Cassidy's orthopedic surgeon, Dr. Kit Song, suggested that we start looking at our options for surgical correction of her curvature. Because Cassidy is so small he was very hesitant to do a fusion of the spine, which would mean that she would stop growing. He then went on to let us know that there is a procedure called Titanium Rib Prothesis that Cassidy may qualify for. I say quailfy because at that time it was a surgery that was not approved by the FDA. (We just got the good news that it was approved this last week!) The great part about the rib is it is an adjustable system so that as Cassidy grows we can go in and have it adjusted to her needs and it will not prohibit growth.
Dr. Song thought that it may be possible that Cassidy had a teathered spinal cord. (Your spinal column is supposed to float in spinal fluid at the base of the spine and Cassidys was attached to her vertebra.) If a teathered cord is not taken care of it will eventually lead to possible long term nerve damage with the potential to loose the ability to walk. So we were off to see the neurosurgeon. Dr. Aulden confirmed the belief that she did indeed have a teathered cord and scheduled surgery for the 23rd of May. Cassidy did wonderful in surgery and everything went as planned. We did stay in ICU for a day and then went to the floor and let her recover. We ended up going home after only 4 days! It amazes me how quickly she heals and bounces back.
The deal with the rib surgery is that there will be a team of 3 docs in the OR with her. The orthopedic surgeon, her pulmonologist and her general surgeon. So we had seen Dr. Redding the pulmonologist and he thinks she is ready to go. Where we had the road block was with Dr. Waldhausen the general surgeon. He had some big concerns. The biggest one being that Cassidy has little body fat and is pretty skinny. They have yet to do a surgery for a rib for a kid as skinny as Cassidy here in Seattle. They have done a few in other centers, of which there are 6 others, with some not so great results. The biggest concern was if we got device in would there be enough skin to close the wound over the top of the device. The second was if we did get it closed would it at some point errode back through the skin, in which case the device would have to come out. It was suggested that we bring on the plastic surgeon at this point and see what he had for suggestions. While Cassidy was recovering from the teathered cord surgery, Dr. Hopper, the plastic surgeon came to see us. He told us that his idea was to put tissue expanders on her back under her muscle and skin. We quickly got Cassidy scheduled for surgery on the 16th of July for the expanders to be put in place.
Cassidy was again to go to ICU.....she did amazingly well and we were released the following morning.
During this surgery four incisions were made. They placed two silicone expanders and then two filler ports. The ports are how they expand them. Everything is under the skin and she will have her stiches in until October.
We has as of now gone in for two expansions. Cassidy is scheduled for one more expansion at the end of September. The rib surgery is scheduled for October 22nd.
I hope this helps explain some of what has been going on and what we are getting ready for. Please email me directly if there are any questions you have that I may have not answered. I will make sure to let you know how Cassidy is doing over the next month.
Thanks for your support.
Shannon

Friday, September 3, 2004

Hi Everyone,
All went well this morning. Not quite as smoothly as I had hoped. We ended up getting shifted to a later slot by about a half hour or so. We had a different anesthesia doctor but one that has had Cassidy before so he was at least familiar with her and her needs. They gave her an oral seditive and about 15 minutes later they took her down to do the inflation. It only takes about 25 minutes total for them to go thru the whole process. The plastic surgeon came out and talked to me. Told me that she did wonderful with no complications with anything and that he managed to get 20ccs in one and 40ccs in the other. So we are now at a total of 100ccs in the right and 120ccs in the left. Cassidy came back still groggy but awake and ready to leave. Her nurse came down quickly and removed her IV and we were ready to go. We managed to make it out of the hospital by 9:35! So now Cassidy is resting and probably will off and on all day. They did give her some ibuprofen thru her IV before we left and it does make her very grumpy. She is sore and recovering from the anesthesia too. I think we will be laying low for the weekend. It is my experience with these expansions that Cassidy takes several days to be back to her normal self and who can blame her. So that's about all for now. I plan on making an entry tomorrow to let those of you who don't know what has been going on the last few months with Cassidys medical treatments and what we have planned for the future.
Thanks for all of your prayers and support.
Shannon

Thursday, September 2, 2004

Finally all the hard work has paid off and it looks like smooth sailing tomorrow.
I got the call this morning that our check in time is 6:45 am and that we have the anesthesia doctor that we requested. This is all wonderful news because Cassidy is not allowed to eat for 6 hours prior to her appointment. Also the fact that we have the same anesthesia team......they know Cassidy well and she trusts them now.
I am going to make this short tonight and will post tomorrow and let you know how things went. Most likely we will lay low this weekend and let Cassidy recover. She will be fussy and not her normal self for a few days. That's all I can think of for now.
Thanks for your prayers,
Shannon, David and Cassidy

Wednesday, September 1, 2004 11:51 AM CDT

Monday we had our appointment with Dr. Hopper (Plastic Surgeon) to chat about Cassidy's tissue expanders. He says they look great and she is progressing nicely. So we go in on Friday for more expansion. Currently there is 85cc's in one and 90cc's in the other. Dr. Hoppers hope is that we take them up to 135 and 140. After Fridays expansion then we only have one more towards the end of Sept. Then we are getting prepared for the big surgery in October. I will post more about that later.
Please keep us in your prayers on Friday.

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