Updates

Spring break is over tomorrow and we go back to Casey's usual schedule. I am so glad that she had the week off; she needed it. Last week was a bad one. Casey had some GI issues that had us about ready to pack up and head to the ER a week ago Wednesday. Right as we were about to load up, she started to perk up and seemed to be coming around. She had some GI bleeding, and fever and she would not tolerate her food at all for a few days. Over last weekend we were able to get her to tolerate her food (we had to dilute it with pedialite and work our way up to formula). We did finally get her back on track. Casey used this week off to rest and get back to normal.

She has been playing some and seems to be doing much better now. We have no idea if the issues were just Casey or if she had some sort of bug. We are very happy she is doing better and that we were able to avoid the hospital.

Casey has a full week with school, therapy and some doctor appointments (all routine- nothing major). Then next weekend some family will be in town for a couple of days. She will be a busy girl. I will try to get some new pics to post and share. As always, we hope everyone is well.

Play for All

The city of Round Rock had the official grand opening for the new accessible park today - Play for All. Casey was having a pretty good morning and told us yes when we asked if she wanted to go. They did a great job. There are all kinds of fun things at the park, and it's not too far from our house. It was a little windy, and after a little bit the wind was bothering Casey some. She was able to hang out long enough to check things out and of course, get her face painted. She loves face painting.

On the way home Casey was so worn out that we
had barely left the parking lot and she was already sound asleep.

I am sure we will be back to visit again soon, and often. I am so glad there are things like this for kids with special needs nearby.

Up to 32!!!

Casey has had a pretty good week. She LOVES Valentine's Day. She was so excited to make her Valentine at school on Monday. When I was getting her dressed Tuesday I asked her if she was going to bring it home that day and she was so excited. Her nurses that worked that day brought in Valentines for her too. She was loving it. An entire day devoted to pink, purple and hearts. It was a Casey kind of day for sure.

On Wednesday she had a GI appointment. Nothing major, just a follow-up. She is up to 32 pounds now. That is a pretty big deal. She just hung out while the doctor was checking her out. She did really well. After we got home the weather was a little cruddy and she started to have a hard time, but once she went to be she seemed okay.

Yesterday she got to go swimming and the weather was beautiful. We had a bit of a hard time with her bath, but other than that it was a great day. I won't go into a ton of detail, but her bath chair at home became unavailable about 10 minutes before we had to head to the pool. So, we packed the bath stuff and decided we would just give her a bath at the pool before heading home. Turns out the hand shower at the pool was also unavailable. Ugh!!!! I had to stand between her and the overhead shower while her nurse filled buckets to wash & rinse her off. The shower chair wasn't working right either there. She was not happy. Poor thing just yelled the entire time. She was very happy to be home when we finally got back. It made for a long afternoon.

The weather is nasty outside today. Casey's having a rough day with lots of drainage. Her nurse has been suctioning non-stop today. We took Casey to therapy this morning. She tried to work, but was having such a bad day. She is hanging out watching movies now (refusing to nap). I don't know if it is just a 5 year-old thing or what, but she fights naps with everything she has. She is miserable, grumpy, and in dire need of a nap - but she refuses to take one.

Next week is pretty busy. Lots of annual reviews all somehow landed on the calendar for next week. It will be a long week, but then we will be done for another year. We hope that everyone is doing well. Have a great weekend.

Long Overdue Post

Wow, it's been a while since my last post. The good news is that there is not much to report. It has been a rough winter for Casey. It seems like she gets sick with something, then as soon as we get her over it she gets sick with something else. Luckily none of these have been too serious. It just seems as though it really is always something. I have heard a lot of other parents say the same thing about their kids. I think it must be the weather. We have still not seen winter show up. We have a few days where it is cool enough to turn on the heater (or so Tim says), but then all of a sudden it gets hot again and we have the AC back on. I know this is hard on my respiratory system so I can only imagine what this is doing to Casey.

Casey has missed a lot of school and therapy so far. I think she was out of school most of the time between Halloween and the end of January. She may have gone 2-3 times total during that period. We have finally gotten her back to at least going one of her two days a week. She did not go today. She seems to have some sort of stomach bug that kicked in last week. Sunday was AWFUL!!! We suctioned non-stop and she was just miserable. I thought if she could get a good night's sleep she would be fine today. However, she was up all night. She was so tired this morning and tried to get some sleep. I decided to cancel school. Today wasn't quite as bad as yesterday, but not great either. She just now (11:PM) went to sleep for the night. We'll see how it goes. Hopefully she will be able to go to school in the morning.

It seems like all of my days are running together over the past few months, so I won't even try to catch everyone up on all of the little details since my last post. On Casey's good days she has been enjoying all of her arts and crafts that she got for Christmas, and watching lots of movies. We are trying to plan her birthday for April. It sounds far off, but it will be here before you know it. We can't decide if we are going to do a party, or just something special with family. We have barely started to work out the details.

Tim has been busy with work and his wood shop out in the garage. He is getting really good with the wood tools. I have been working with a couple of groups (local and online) that support the special needs community(s). One group I work with just launched a new website. It is pretty exciting. If you want to check it out (especially any other SN families reading this) it is called Mommies of Miracles (MOM). You may recognize Casey as the "Trivia Tuesday" image on the main page. It's an old picture, but very cute.

That's about it for now. Our night nurse called out tonight, so I am on the night shift and should get back to work. As always, we hope everyone is well.

Success

I am very happy to report that we are HOME! Casey did amazing. They were able to place the tube in the right ear. I was really worried it was going to become another cholesteotoma. The doctor cleaned out the left ear's cholesteotoma and said that in general it is doing pretty well. We still have to get it cleaned often, but we do not need to start looking into a major reconstruction surgery.

The dentist was going to get some images and do some cleaning. However, we found out that in order to do that Casey would have to be intubated. That was a deal breaker. We decided to cancel that part of the day. Her teeth are doing okay, and we can do with out the images for now. Intubation just adds so many extra risk.

Anesthesia did an amazing job. They were prepared, they listened, and they got us back to our princess as quick as possible. The entire experience today was positive.

When we got to Casey she was still asleep. We sat and waited and a few minutes later she was up and ready to go. After she woke up they gave her some tylenal and had us get her dressed.

Casey was excited to be home. As soon as we got her back to her favorite spot on the couch she started making her happy sounds. She has doctor's order to just rest today (I need those orders). I don't think any of us will have a problem with a nice quiet weekend.

Thank you all for your thoughts and prayers. We really appreciate all of you. Have a wonderful weekend, now that we are home I know that we will :)

Ready for Surgery

We spoke with the hospital today and we are all set for Casey's procedure tomorrow. Her dentist wants to get some images of her permanent teeth (just to have a better idea of what is going on) while Casey is under. The initial ear procedure was scheduled quickly to reduce the window for the ear to get worse. Then we called the dentist just yesterday (I kept meaning to and never got to it). They were able to work together and get it all scheduled. Thankfully we have wonderful doctors that really care about our little princess. We are so grateful that they understand her risks and are will do jump through hoops to get things done in the safest way for Casey. I am not sure what time we will be home tomorrow. As soon as we get back and settled one of us will be sure to post an update. Thanks again for all of the thoughts and prayers.

Those Darn Ears

Back in June 2009 Casey went in for routine ear tube surgery. When the ENT got in he found that her left ear had a Cholesteotoma. The doctor put the right tube in and from that point on we had been going in to see ENT every 3 months to have them clean out her left ear. The right tube fell out sometime in 2010 and the doctor has been checking the right ear while we are there to have the left ear cleaned. A few months after the right tube fell out the doctor noticed some negative pressure in the right drum. However, with the extra risk any procedure puts on Casey, he has just been watching it to make sure it does not progress.

Just before Christmas Casey went in to see the ENT. This winter she seems to be getting more ear infections that usual. Ear infections and drainage are pretty common with Cholesteotomas, so we have just been treating them with drops each time. A few weeks ago we noticed her right ear was draining some too and so he took a closer look. We had been able to maintain that right ear's pressure for quite a while. The pressure has increased this winter enough for him to suggest putting a tube back in the right ear. Here's where it gets a little tricky- this is what we did in 2009 and we didn't act quick enough. Between the time he suggested tubes and the time we got Casey in for the procedure, the left ear perforated and advanced to a Cholesteotoma.

We are moving quick this time. Casey is scheduled to get her right tube done on Friday. While she is there the doctor is also going to clean out the left ear really good. He should be able to give us a better idea of how the left ear is doing. We are very hopeful and optimistic that the doctor will be able to get the right tubes placed. There is a chance he will not be able to place it and we will have to start dealing with a Cholesteotoma on that side as well.

Any procedure is scary for any kid, and extra scary for kids with respiratory issues. We will spend lots of time with anesthesia making sure they know what to expect. Casey has had this procedure done at this hospital before and things went very well. Regardless of positive past experiences, we are always a mess until we have her back with us. The ENT knows Casey very well. He is planning to do this with just gas and to avoid an intubation. That is the current plan.

We will try to update late Friday or sometime over the weekend to let everyone know how it went. Please keep Casey in your thoughts and prayers this Friday.