Gloves & More

Casey wears splint or gloves on her hands that are designed to keep her hand and thumb open instead of in a fist. She has had to wear some version of these since short after birth. You can see some of her baby NICU pictures with little blue plastic ones. The first set were to open up her fingers. The first pair did not do much at all for her thumbs. Later we moved to a neoprene model that was focused on opening her thumb and did not really do much for her fingers. When Casey is relaxed or sleeping she is pretty good about getting her fingers open so we figured that the focus should be on the thumb if we have to choose one. Casey has been wearing McKie Splints for years. They are easy to use, easy to clean, affordable, etc. Just before she switched from ECI to MISD (Arpil) ECI wanted us to try out a new splint that would focus on her thumb, fingers and even wrist. Sure, why not.

We had them measure Casey's hands, fingers, wrist, etc and order the gloves. We got them right as she switched to the school district. We tried to use them a few times after we got them but they just seemed off. The fingers sit on this big board like paddle and they are so massive. Casey can not do anything with her hands while in the gloves. Usually they are designed for kids to wear all day. There is just no way with these that we could ever get her to go more than 20 minutes. We finally called the company that ordered them and took her back up today to get them refitted. They remeasured and told us that the gloves are SUPPOSED to fit like that. What an awful design.

We had to go out in the rain to get to the appointment. Then the building was totally impossible to get to. We had to circle all around and go hunting for the actual suite. Then they told us that the glove was designed to be unusable basically. So frustrating. We have decided that next week when Casey goes in for her Orthopedic follow-up we are going to see if they can order us better ones. I am pretty sure they are going to want to do new AFO's as well so maybe we can get them all done in one sitting.

Casey's vision teacher/therapist and occupational therapist are going to start coming again next week. Still no word from Speech. I liked ECI so much better than the school for therapies. They worked all year and were so much better about scheduling and setting goals and stuff. I think I need to find another source for Casey's therapies. The school can be extra but I don't think they are working out as her primary source.

Casey had a GI appointment last week. Things went well. She weighed 29lbs. A few weeks before she was only 27 for her Neuro appointment. I told the GI doctor that I was really worried because she had lost weight and so I was trying to push her food a little to make up for all the leaking. He said that the aggressive rate we have been hitting for her is a good amount and to keep her on it. He also said not to worry about the 27 from Neuro. He said that they are not exact in weights and that it may have been off a little. He also warned that we be sure not to get her on the heavy side either. Such a balancing act. We need her to gain weight and grow, but not too much.

I think that is about it for now. We have a few more appointments and another round of Botox this month. I will post updates as we have them. As always, we hope everyone is doing well.

Lost Pet

I have seen people put up posters for lost dogs, cats, even birds but never a fish. I honestly don't know what happened to Casey's sucker fish. If I thought there were a chance for him to come back home I would put up the "Lost Pet" poster for him.

Every so often I have to give her fish tank a good cleaning. I went in to do this morning. I saw Al, the 2 shrimp, but could not find the sucker anywhere. I search in the plant, in the rocks, everywhere he likes to hide but he was nowhere to be found. I proceeded to clean the tank. After I got most of it done and still could not find the sucker I decided to dump it and start fresh. I moved the other fish to another location and went about pulling everything out of the tank. Still no sucker. Then I opened up the filter to see if he got sucked in, no. He is was just missing.

I decided that Tim must have found him dead and flushed him and just not mentioned it. So I asked and he said that he did not take the sucker out either. How does a person lose a fish?! It's not like he ran away, I don't think. The only other option we have come up with is that the beta (Al) must have eaten him. So weird.

Busy Day

We had a meeting with our lawyer this morning. We have been working on setting up our wills, and a trusts for Casey and all that good stuff. Today was our final meeting. We had to go in, review all the final drafts, and sign a bunch of stuff. We decided to take Casey with us. The first half of the meeting went great. Casey was so calm and content to just hang out in her chair. Then about half way through I don't know if she just got bored, if it was too hot, not sure what caused it but Casey had had enough. She was so mad. Then a little later and she had a big wet diaper to go with it. We were very happy to sign the final paper and get her back home.

After we had been home for about 30 minutes Casey's nurse came in. She had just enough time to get all of Casey's vitals then help me load her back up. Casey had water therapy this afternoon. She did great today. Margaret was able to get some really good stretches with Casey's arms and legs. Casey yelled some, but overall she cooperated pretty well.

After therapy we got Casey loaded into the car, again, and started home. Before I pulled the van out of the parking spot Casey was sound asleep. She slept the entire way home. When we got back home I picked her up to carry her in to the house and she barely even noticed I was moving her. She was so worn out from her busy day. She slept for a good hour.

Shortly after Casey woke up a delivery person from a new vendor was here. We are trying out a local vendor for Casey's suction equipment. We got a new (stationary- not portable) machine for the bedroom. It is a little quieter. We will try it out tonight. There are a few items that they did not bring yet. If they get us the rest of our order soon and everything looks good we will stick with them.

Casey has been using the scopolamine patch for just over a week now. So far so good. She seems to be a bit drier and we are suctioning a little bit less. We still need to watch her for a little while, but so far so good.

That's about it for now. We are still working on nursing. We have one that is working 3 days a week. We still need to find one to pick up the other 2. I really hope to get this person in place and trained soon. We are also still waiting on Casey's therapists to set up the new schedules for this semester. As always, we hope everyone is doing well.

Much Better

So Friday was a bad day, Casey's nurse pulled out her tube and things were just really stressful. Then Monday came with a new nurse and things just seemed to go from bad to worse. I was so frustrated with the nurses by the end of the day Monday that I didn't even know where to begin to try and correct/better things.

I called the nursing service after the nurse left on Monday and told them the situation and that we were done with her. They started looking for more nurses for us right away. The only good thing that came out of Monday was a new secretion idea. She asked if we had ever used Scopolamine patches. I had never heard of this before. She said another patient she had used them to help reduce secretions and they helped this other patient a lot.

I did some research on Monday into the patches. It is kind of interesting. They are supposed to block/reduce neuro signals from the brain that generate saliva. It seems like the are most commonly used for other things, but if they work and we can avoid a huge impact from the possible side affects they are definitely worth a try.

Casey has 2 appointments yesterday (Neuro and ENT). Nancy was with us so at least I knew I had a nurse that knew Casey and that I trusted going with me. We went to Neuro first. Nancy and I were talking before the doctor came in and I asked her to be sure and remind me to ask about the patches when the doctor came in. It was so funny, the doctor came in and I am not kidding one of the first things out of her mouth was "Have we talked about the patched for Casey". We talked some about possible side affects and decided to go ahead and see how Casey does with them. Tim picked them up from the pharmacy this morning and Casey has one on now. It said it takes about 4 hours to see it work. Her 4 hours is up in about 30 minutes. We will see how she does this evening. The patch is one patch every 3 days. The doctor said I can change it more often if I need to or I can add additional patches (or halves) if I need to.

The doctor also went ahead and got Casey on the schedule for the September Botox rounds. We will be going in on 9/28 for her next round. We are supposed to see what we can do with the patches between now and then. If we can get the patches to help with the secretions then she can use more Botox in Casey's legs. If the patches don't work then she will use the majority of the Botox in her salivary glands again.

After Neuro we drove on to ENT. Casey had to get her Cholosteoma cleaned out. It was not to bad this time. She cried some, but not as much as the past few times. The doctor said it still needs to be watched but that it is stable. So not good, but also not bad.

The only negative from Casey's appointments yesterday was that she has lost some weight. I guess I was not totally surprised. She has been so leaky that I am sure she has lost a decent portion of the food we give her. I was sad that she lost weight, but not shocked. We just have to get this leak fixed and she will get back to putting on weight soon.

Nancy and I were talking about Casey's leaky tube (that is so much worse since Friday's incident). Nancy mentioned another patient of hers has the same problem. The other patient went into the hospital over night to have the tube taken out and an NJ Tube put in to allow the gtube stoma to heal a little. Just like Casey, there is never a good opportunity to take out the gtube since it is almost always in use. This sounded like a really god idea to me. This would be SOOO much better than having to have the entire gtube redone (major surgery). I called her surgeon to talk about possibly doing this.

This morning Casey's friend, Maya, and her mom, Elizabeth, came over to play. Casey loves to have friends come over. They live about an hour away so it is hard to see them often. It is always nice when we can find a way to see them though. We are going to try and plan a weekend trip for them to come over so Jason (the dad) can come too. Hopefully we can do that sometime soon.

After our play date we had a nurse come over for a meeting. She seemed really good, I liked her right away. She has some other stuff going on this week but will hopefully start working with us on Monday. For now they are looking to give her Monday and Tuesday, possibly Wednesday as well. I was so glad that she seemed to be a good fit.

I just got off the phone with Casey's surgeon. She liked the NJ idea for Casey. However before we go tot hat step we are going to try one more step here at home. They are going to send us a Foley Cath tube to use that will be much thinner than her tube. Casey had a Foley for the first few weeks after the Gtube surgery way back when. We will put it in then dam it up with gauze and what not and leave it for 24-48 hours. Hopefully that will help the stoma close up a little so that when we go back to her Gtube the stoma is a much tighter fit around the stem. Then if this is still not enough, then we can look at doing the NJ as the next step. Either way, both of those ideas sound fabulous when compared to having the Gtube completely redone. I am very happy to have some new options to work with.

That's about it for now. I guess that is actually a lot for a post. As always we hope everyone is doing well. I will post more about nurses and Gtube leaks as we go. Hopefully I will have good news to post.

Nursing Woes

Oh man, it is so hard to get the right nurse. We interviewed/met a bunch over the past month. Out of them all there was 2 that I really liked and 1 that I was on the fence (just couldn't read her in our meeting). We hired my favorite (Michelle) but sadly Michelle is a school nurse and was only available for 2 weeks then had to return to her main job.

Second was Angela. Angela started on Wednesday and worked Wed-Fri last week. I like her, but she is not perfect. She is a little careless and that scares me a lot. The first few shifts that a nurse is here I am right by their side the entire time to be sure that I show them how things work, what to look for, listen for, etc. On the 3rd day (Friday) I backed off some. I was home, but in the other room most of the time to let her go mostly on her own. Around lunch time I heard the dreaded "Oh, no" coming from the play room. It was shortly followed by a "Marty, can you come quick?" Neither of those phrases are ones I like to hear. I ran to the play room to find that she had not been paying attention and had sat on Casey feed line. She scooted back to get a toy and took the line with her, hence pulling the tube right out of Casey's stomach. UGH!!!! I was so mad. I yelled some about how she needs to be careful and pay more attention. I went on to tell her how important it is so always be aware of EVERYTHING when dealing with special needs kids. A small mistake can lead to huge trouble so quickly. She felt awful and apologized over and over again. I know she did not do it on purpose. However, it was an accident that could have and should have been avoided. We had Casey at home and in our care for over 3 years before I did that. This was her 3rd day!!!! I know accidents happen, but she has to be more careful. I did not send her home. I will give her another chance. If she remains to be careless and inattentive to these things I think we will have to start looking for yet another nurse.

My 3rd choice in nurses was Manuela. I could not get a read at all on her so she was on my maybe list. She was supposed to come for a shift last week (Tuesday) but called in sick on her first day. This was not a good sign, but these things happen. We had a nurse a while back that was supposed to start. She called in sick on day 1 then on day 2 she called the office and said the drive is just too much and she won't be coming ever. Manuela's day 2 is today. I was told she would be here from 8-4. At 8:30 she was still not here so I called the office. They told me there was a scheduling miscommunication and that she would be here at 9. Okay, I don't have the details on this so I won't hold it against her. She got here at 9 and seemed mad to be here, kind of a weird vibe. I went ahead and started showing her how things work around here. She doesn't seem to agree/approve of how we do things. Everything that I show her for Casey she has given me a condescending look after I give her the instructions. She has already started with the tracheotomy questions (not knowing anything about the situation). After she asked about it and I said the simple, no we do not want that for her the benefit would not be worth it for us she gave me this look like she thought I was crazy. I then had to go on with more explanations that still were not enough for her. She forced me to get into the quality of life details and things that are really none of her business. I do not need to deal with this. My original maybe on her is quickly becoming a no. I could not read her before, but the vibe I am getting from her today just is not a good one at all.

I guess for now we just have Angela. I need to keep interviewing more to find someone to fill my other shifts. Manuela is not the person for the job. Just 3 more hours and her shift is done. I am looking forward to the end of this shift. I will be asking that she not come back.

Nancy is here tomorrow. We like Nancy; she was Casey's backup nurse for the past 8-9 months. We just found out that tomorrow is her last day in home health so we lost her too. I need to find another really good nurse to split the week with Angela. If I like the other nurse better maybe I can give him/her the majority of the shifts and have Angela as a backup. Either way, I need to get some more nurses over to interview.

Latest Updates

What a month it has been. We had a ton of appointments this month but I have rescheduled them all since we have not had nursing in place. Maritza left us the last week in July. We had Michelle for 2 weeks. Michelle had just started to get used to taking care of Casey when she had to go back to her other job with the school. UGH!!! The service we use for nursing sent a few out but none that we loved. Finally last week they sent out one that was a good fit. FINALLY!!! Her name is Angela and she started yesterday. Casey seems to like her. The only thing is that she has another job as well so she can only work 3 days a week. So we still need to find another nurse to pick up at least 1 more day a week. Hopefully we will find someone for that extra shift soon. Next week Angela has some other stuff that she has to do so next week we are back to no one (just for the week though). This week, then starting the week after next we will have 3 shifts (Wed, Thur, Fri) each week. We are trying to get someone to pick up Tuesday. I really miss Maritza and just want to get back to a normal routine. Casey has another nurse that works from time to time to fill in for her primary nurse. She picked up a few shifts each week after Michelle left. She will be here at least 1 day next week. However, I just found out today that next week is her last week. She no longer wants to work home health. I am hopeful that we will find another filler to take Tuesdays and cover when needed.

We start a round of doctor appointments soon. I am sure we will be talking about trying the next round of Botox soon too. I will post updates as we get them. Casey is doing well. As always we hope all of you are doing well too.

Fun Stuff

Isaiah came over with his parents for a little while this evening. Casey really seemed to like him. She has always really taken to boys. It's kind of funny. She likes to play with little girls too, but she really shows off when little boys are around. She was looking around and talking to him. Tim was holding her and she was even bending her legs a little. After they left I asked her if she wants him to come back soon and she gave me a big YES. I was really glad we finally got to have them over for a bit. Hopefully we will get to see them again soon.

Busy Girl

Yesterday Casey had a play date. Her friend Anjali came over with her mom, Rhitu, for a little while. I of course did not think to grab the camera. Casey seemed to have a good time. Anjali was so sweet, she would show Casey the toys. When we suctioned Casey she wanted to help her. It was very cute and very sweet. It is so funny how much kids change in such short time periods. We saw Anjali a while back (maybe a year) and she was quiet and shy and then yesterday she was so chatty and just funny. Hopefully they can come over to play again soon.

Casey has water therapy today. Then tomorrow she has Isaiah coming by to play.

We have been training a new nurse this week (Michelle). She is really sweet. The sad thing is that once she is trained she is leaving us. She is just with us for a few weeks and then she goes back to her normal job as a school nurse. We should have some more candidates come out this week and next. I really hope we find a good full time person soon. I look forward to getting back to a normal schedule.

That's pretty much it for right now. As always we hope everyone is doing well.

Graduation

What a big day!!! Casey's nurse, Martiza, came over around 10. It was so sweet. She brought Casey a "Congratulations" balloon and a dozen yellow roses. Casey LOVES balloons & yellow. Very very sweet of her. After she got here we got Casey ready to go. We all headed to the celebration just before 11. There were about 8-10 kids that graduated today with Casey. It was so cute. The had diplomas, little cap & gowns and everything. We have a few other pics and even some video that we need to upload but here is a quick one of the 3 of us. The celebration was really cute. They had a cake and drinks, and took lots of pics of all the kidos. I think Casey had a good time. It was Maritza's last day as her full time nurse (she is still with us, just not full time now). I was glad we were able to do something special with her today. The timing worked out great.

After we got home Casey was so tired. She slept for a little while then some friends of ours came over. They brought their cameras and we had an afternoon photo shoot. It is too hard on Casey to try and take her to a photo studio so this was the next best thing. They got lots of really good pictures. Hopefully we will get them all processed and uploaded in the next week or so (as well as the rest of her grad photos). Keep an eye on her Flickr page for updates.

Hair Do

So a long time ago I tried to cut Casey's hair myself. It did not go well. I swore that I would never do it again. It was just to hard to hold her up with one hand and cut with the other. I used to cut my sisters hair all the time. I gave them some really cute cuts. But I am just not able to do Casey's hair (and no, having Tim hold her is not an option). I called a local Cool Cuts 4 Kids and talked with one of the stylists there. After I explained that Casey needs a haircut, but that she is not really mobile she agreed to come to us. She came by and Casey did really good. She took off a few inches. I think Casey will be much cooler now. She gets so hot and sweaty with all that hair on her neck and back. Now we just need to style it and she will be all good to go.

No Play Date :(

Casey and her friend had to reschedule yesterday evening play date. Isaiah had a running nose and started sneezing so we decided to play it safe and reschedule for another time.

It is actually kind of an interesting story - very small world. Last October we took Casey to a Halloween party for the ECI group at Easter Seals. While we were there we met a few kids. One that we remembered was dressed as Caesar. He was so cute and just learning to walk. We talked with his mom a little before we had to leave the party. Then a few weeks ago I got an email through the contact us link from a guy I used to go to school with. He told me about his son and sent me the link to his page. I replied back and told him that his story reminded me of the little boy from Halloween. Anyway, long story short, that little boy was his son. He was not at the party, just his wife. It really is a small world. Maybe next week we can try again.

Casey does not have much more going on this week. We are still waiting to meet some nurses to possibly/hopefully work out as Casey's new primary day nurse. The end of this month is going to be here very quickly so we need to get that done.

Fun Stuff

Casey's boyfriend and his family from California came over to visit last Friday. It was so nice to see them while they were in town visiting. He was not feeling well so Casey and him just took it easy while he was here. We had hoped to catch up with them later in the weekend before they had to get back too. We had a bunch of other stuff going on so we ended up having to skip the other stuff. It was so great to see them. I brought down the camera to take pics, but forgot to turn it on and take any. I am so bad about that.

Casey had water therapy on Wednesday. That was her only appointment this past week. It was nice not to have to go to a bunch this week.

We did get some bad news. Maritza (Casey's primary nurse) has decided to take a full time job with her church. I am sure I would have made the same choice in her shoes. It is still very sad that we are not going to be able to have her full time any longer. She still wants to come by for a few hours each week. I am sure Casey will be excited when she comes by; we are all going to miss her a lot. We should start meeting possible candidates this week. Maritza will be with us through the month. A month used to seem like forever but it goes by in the blink of an eye now a days. I hope we can find someone that Casey really takes to. It may take a few tries (like last time) but I am sure someone is out there for us.

I got an email from a friend of mine yesterday saying she was going to be in Austin this weekend. She and I have been trying to get together since I got back to Texas. It finally worked out this time. She came over this morning with her 2 girls (Emily -7 and Ally -3). We spent the morning here with Casey. After word she and I took her girls to the pool and Chuck E Cheese. We had a fun day. Casey got to hang out with her daddy (even better than Chuck E Cheese). The pic above was before we headed out.

Casey has had lots of friends come by in the past few weeks. She loves to see her friends. She has another friend coming over Tuesday evening for a little while. Tuesday's friend is a new friend. I will post more about that play date later this week. As always we hope everyone is well. Have a happy and safe 4th of July!

Stuff

Well, the Mini was not the answer we were looking for. It was IMPOSSIBLE to use and the leakage was as bad (maybe worse). We went back to the Mic-key a few days after trying the Mini. I am waiting to hear back from the surgeon's office to see what they want us to try next. I was really hoping it was going to fix things. Oh well :(

Casey had just gotten over the fussy phase of recovery from her surgery when we switched her to the Mini. As soon as we switched she got all upset again. Nothing seemed to help. I think the way the Mini fit may have actually been uncomfortable for her. After we switched back she has been much happier.

So far we are waiting/watching for Botox results. Her hands are much looser, and less sweaty. We have not seen much in her legs at all. It is hard to say if the salivary glands have been changed or not. She has been so fussy off and on since we got home. When she is upset it makes them really bad. When she has been happy I think they are a little drier. Her nurse said her chest sounds drier too. The doctor did say she may have to go through a few rounds before the dose is enough to really see. Ugh!!! Medicine is supposed to be black and white. I hate the trial and error approach. It is better than doing nothing at all, but still.

Casey had her 2 week post-op with ENT this morning. The right ear looks great. He did clean out her left. We have to go back in 2 months to have it cleaned out again. She HATES to have them cleaned out. They use a little vacuum device to do it. I am sure I would hate it too. After 2 months we will decide if 2 months is enough/too much time between visits. Depending on how much he has to clean out on the next visit will determine if she will have to come in more frequently or not. We are doing everything we can to help keep it clean and dry. As much as she hates to get them vacuumed out, and as much as I hate taking her in for that, it does beat having to have a big reconstructive surgery. The longer we can put that off the better.

Casey's boyfriend is coming over tomorrow morning. We have not seen them since we left California. I am sure she is going to be excited. I will get some pics and try to post them over the weekend. As always, we hope everyone is doing well.

GTube Updates

A few days before surgery Casey met with a surgeon to discuss her G Tube. It had been leaking so much and the site didn't want to heal. The surgeon does not want to rush to have the G Tube redone. That's a major surgery for anyone. Then when you add Casey's pulmonary issues it is a really huge surgery. We did not want to rush into it either. There are a few other low profile tubes that fit different. Casey was using a Mic-key from the beginning. The surgeon suggested we try a Mini. The way the balloon fits inside the stomach is supposed to help reduce leaking. If the Mini doesn't work then there is another one, but I don't remember it's name.

The Mini is new and not many people carry it yet. We found a place local that could special order it for us. It came in yesterday. The surgeon suggested that the night before we switch it out to take out her Mic-Key and leave it out over night. This would help the site tighten up a little. Then in the morning put in the Mini. That sounded easy enough.

Casey finished up her food for the day around 11:30 last night. About 1:30 I took out the Mic-Key. I wanted to give her food time to digest so it didn't just spill out everywhere when I pulled it out. Around 7 this morning I got her all cleaned up and put in the Mini. The water balloon port was really hard to get the syringe into. I thought I had it, pushed the water, and ended up just pushing the water onto the bed. I had to really cram it in there and hold it tight to get the balloon to fill. The Mic-key I could do in my sleep. The tips and ports fit so easy and perfectly. After we finally got the Mini on and the balloon filled Tim took Casey to start her breakfast. The extension (a plug that we put into the GTube that allows us to connect feeds, medicine, etc) was impossible to get into place. We had to really cram it in as well and hold it while we twisted it to lock in place. I really hope after a day or so of use that the port connection get easier to use.

Once we finally did get everything in it does seem to work okay. Casey had some leaking this morning. We will have to just watch closely over the next few days to determine if it does what we need it to or not.

Recovering & More

The first few days after surgery Casey was pretty sore. We had to keep her well medicated (switching between Tylenol & Motrin around the clock). After the 3rd day we were able to start backing off on how often we gave her the pain medicine. Yesterday was the first day she was able to go all day with out needing any. I hate to see her in pain. It just breaks my heart. She did really good though. I am sure if I had been poked that many times for all of her Botox sites, and then a tube in one ear and a mess in the other I would be pretty sore too.

The left ear that had the problems looked pretty bad. We have a little otoscope that we use and the right ear looked so pretty and the tube is placed so nicely. The left ear was swollen and bloody; it just looked awful. We had drops to use in both of her ears. Each day we could see big improvements. Her left ear is still a little pink and swollen. It looks SOOO much better though.

Casey had an EEG on Monday morning. The test came back very well. Each year she has improved on this test. She had a few slow points, but no spikes or anything to cause alarm. Her doctor called and said that it looked really good. Since Casey has been doing fine on her current seizure medication we are not going to rush to get her off of it. For now we will keep her on it on her same dose. As she has gotten bigger the dose has stayed the same. She used to have a fair to large dose for her size, but now the dose is considered pretty small. With everything else that she has had going on I am not in a rush to change things either. So for now we will just stay the course.

Since Casey was so fussy we ended up canceling her water therapy this week. She needed a few extra days at home to just rest. She has a not from her doctor saying she can get back in the pool. The only catch is that she MUST wear a plug in her left ear. We got her some plugs that she seems okay with. She can get back to her therapies next week. I am sure she will be happy to see Margaret.

This week has been nice. Monday Ken (Tim's brother) was in town for work and was able to come by to visit a little bit. Wednesday my uncle from New Hampshire came into town to stay with my grandparents. He flies into Austin so he was able to visit a bit yesterday before heading to Temple. My grandparents and uncle will be back for lunch tomorrow. Then Friday evening Molly (my baby sister) and her family (Scott & Riley) will be coming over. They are staying and heading back Saturday afternoon. Then Sunday my mom, John, grandparents, uncle and Megan (my other sister) will all come over for a Father's Day lunch - and of course to see how Casey is doing after her surgery. It is a family filled week for us. Tim has been on vacation this week too, so it has been great that he was able to spend some time with everyone.

Next week some of our friends (Casey's boyfriend) from California are in town. I am not sure which day yet, but one day next week we will get together with them. I can not wait to see what Casey does when she sees Patricio. She loved when he would come to play in Santa Monica. He has a baby sister now too. I think Casey will be so happy to see them. Tim and I will too, and his parents of course.

We go back on Thursday for Casey's 2 week follow up with ENT. We will be seeing a lot of them over the next few months. It sounds like we are going to have to go in every month or two to have her left ear checked and cleaned. She SCREAMED last time they cleaned her ear. He said it doesn't hurt it is just an awkward feeling and loud sound so kids don't like it. I am going to have to find something she loves to reward her with after those visits.

More Details (As Promised)

So the surgery overall went VERY well. Everyone involved was fantastic. We did not have to argue or even push the issue of intubation. Every agreed upfront that it was not the way to go.

Casey and I got up around 5 to get her medications and stuff going. We got Tim up shortly after. We got to the hospital right on time. They were ready for us. They got us back right away so that we would not drain the battery on Casey's suction. We got there at 8:30 and she was scheduled to have her procedures at 10. The doctors where both running a little late. They ended up getting there within a few minutes of each other. Casey ended up going back right around 11.

ENT went first to put in the tubes, then neuro followed with Botox. Ent came out to go over his findings while neuro finished up. Before he finished going over everything they were calling for me to go to recover for Casey.I was so happy that they got me back there so quickly. I actually got to the room before she did. It was about 11:30 when we were in the post-op area.

Casey of course was sound asleep. It took a little bit for the gas to wear off. All of the anesthesiologist came by to tell us how well she did. The nurses were ready for her too. The entire ordeal was just very well done. Other than starting a little late (which all surgeries do) everything ran like a well oiled machine.

There was a complication with Casey's left ear. The right ear was no trouble. The doctor said it was retracted, and there was a lot of fluid, but he was able to get the tube in place. However, the left was not so good. The left had retracted too much and advanced into some bigger problems. The left retracted so much that it caused a hole in her ear drum. If that was all then no big deal. Instead in addition to the hole she had some dead skin getting into the hole complicating things a bit. Casey's left ear has what is called a Cholesteatoma. For right now he wants to watch and see what happens. As Tim said "Play it by EAR". He told us that Casey is not in pain. As long as the hold does not start to eat away the ear bones she is fine. He cleaned out what he could. He was NOT able to put in a tube. We will have to go in a little more frequently for a while for him to check on it, and probably clean it out. If things get worse we can discuss having to do the bigger surgery later.

No rush on major surgeries. The minor procedures done today were stressful enough. As long as she is not in pain and there it is not causing other problems we are good just waiting. We will have to research this new condition and learn as much as we can. For now we will just keep it dry (lots of ear plugs in her future).

We should see the Botox kick in over the weekend. We are anxious to see how she does with it. The doctor said she can give her more next time if we need to. We will keep everyone posted on how she progresses.

Thank you to everyone for all of your kind words and warm thoughts. It really means a lot to us to know so many people care. We hope everyone is doing well.

Pic from recovery

Casey out of surgery

Casey is in recovery and doing very well - there is a problem with her
left ear so a small change of plans during surgery - more on that
later...

Everyone here has been great, and since intubation wasn't needed, we
should get to come home this afternoon.

Almost Ready...

We had a full morning/afternoon today. Casey had a 10:AM appointment with general pediatric surgery.

The surgery appointment went really well. We just went in to meet the surgeon and establish a relationship.

Casey's GTube has still been really leaky. The surgeon suggested we try another type of tube to see if it helps. As far as needing to have surgery to have the tube redone, not right now. She said she may need it next year or the year after, but not right now. We have enough on our plate right now with Friday's surgery. I was really glad it doesn't need to be rushed.

After we left that appointment we went over to the main hospital. We grabbed lunch and took Casey to walk around the park areas outside. Then at 1:PM we met with anesthesia to prepare for Friday.

The anesthesia appointment was a little more stressful. Having to go over all the airway concerns, history, etc is always a mess. It started out with the doctor wanting to go a much different direction, but once he heard all of the facts he came over to our point.

Now we just have to wait. Casey has water therapy in the morning then the rest of the day to rest and get ready. Friday we will be up super early to get all of her medications and stuff done before we head to the hospital. Casey has to stop fluids pretty early since she is going to be put under. We are still very stressed about the first procedure in Austin, but I do feel a little better now that I know anesthesia gets it and knows what to expect.

I doubt I will post again before her surgery. I will try post Friday after we are back home. If we are too tired we may just go to bed and post in the morning. As always we hope everyone is well. We will post more details soon.

-The pictures are Casey at the butterfly wall. In the waiting area in surgery they have a projected image of butterflies. It's kind of cool, there is a sensor that picks up on stationary objects/shadows on the wall. So while Casey sat there and cast her shadow the butterflies would land on her outline. She really seemed to like. She yelled at us a bit after Maritza and I took her back to see the doctor.

One down....

This is such a crazy week. Casey had an appointment with pulmonary this morning. She had her regular follow up as well as she had to get cleared for Friday's surgery. Everything went well at her appointment. She was mad and did not want to be there. We were in and out pretty quick. She got the sign off she needed so on to the next appointment.

We have a full week of appointments this week, then surgery is Friday. I will keep everyone posted as we get ready for her procedures.