Halloween Party

Casey had a very fun day today. We all went to the Kids Carnival in Culver. It was really nice. They put on a special carnival for special needs kids every year. There were kids of all ages there. Casey really had a good time. They had face painting, games, a duck pond, and karaoke. Casey seemed to really like listening to the kids sing. It was really cute. They sang songs like Twinkle Twinkle Little Star or Rudolph the Red Nose Reindeer.

Casey wore her skeleton shirt. It glows in the dark. We were going to be a mummy, but it's just too hot with the fires and stuff right now. Towards the end of the party Casey just ran out of gas. She cuddled up and slept almost the whole way home.

We hope everyone has a fun and safe Halloween!

Ears

Casey had tubes put in her ears a little over a year ago (10/17/06). When we had this done we were told that they would work their way out over the next 9-12 months. We were also told that some children need to have them redone. Casey did not seem to have ear pain, they just found fluid in her ears when we were getting audiology test done. Last year it was really no big deal.

About 2 months ago we went in for follow up audiology tests. During these tests we were told that her tubes were out of the drum and just sitting in her canal. They said they saw more fluid and suggested we have the tubes redone. When we went in to see ENT about the tubes this time was a bit more concerning. Instead of just seeing the fluid they told us that the left ear drum appeared to be caving in. Our original ENT was out on maternity leave so we saw a non pediatric ENT that was covering for her. After we waited more than 2 hours to see him (with an appointment) he spent a total of maybe 3 minutes in the room. He said Casey needed the tubes redone and that her left ear drum was very bad and that we would very likely need to have ear drum reconstructive surgery to fix it.

Many doctors check Casey's ears and I was shocked by the new ENT's suggestions. I tried to get answers as to what happened, how to prevent it from happening to the other ear, etc. The doctor was very rude. He was rushing out of the room and just did not give me answers at all. When I got home I told Tim and we decided that we needed a second opinion. And, this opinion needed to be with a pediatric ENT. I called Children's Hospital and got us in with a pediatric ENT over there.

The new ENT group was so much better. They spent all the time we needed answering questions and going over how things work. They said that Casey's ear drum was in fact caving in, but that they would never recommend a reconstructive surgery for a child. They said that it was fairly common for children and that normally placing a tube in the drum will correct the issue. We were able to get them to do the tubes while we were there for Casey's foot surgery. It worked out great. She only had to have 1 anaesthesia and both procedures.

We went for the ENT follow up this morning. Everything looks good. The doctor said that when she got in there Casey had a lot of fluid and infection in both ears. She also said both drums were caving in. She said that after placing the tubes that both drums look good. They used a special pressurized tube that helps keep things healthy. We will go back in 3 months for them to keep an eye on them.

Casey has a VERY high pallet, nearly a cleft pallet. The ENT said that it is common for cleft patients to have the same problem that Casey is having. The positioning of the ear and all of it's parts is affected by the width and position of the pallet. Many cleft patients have to get the tubes redone every time they come out. At this point they are going to keep an eye on Casey's tubes and ear drum. They are hoping as she grows that her pallet will strengthen and that she will not need to continually get her ear tubes redone.

It's so amazing at how differently doctors approach things. Last year we had the tubes done and they never mentioned the ear drums being at risk, nor did they say anything about the pallet. They had us come back at 6 months to just check on the tubes. At the 6 month appointment they pretty much washed their hands. They said to call if we thought she needed to have them redone, but they did not suggest any further treatment. Now this time around they have explained things much better. In addition they want to closely follow Casey until they are sure she is out of risk for ear drum damage.

Long story short, if you have a kid (especially a special needs child) be sure the doctors are specifically pediatric. It makes such a big difference.

On a separate note...

I don't have pictures or details yet, but I heard the Spa party in Austin this weekend was a lot fun. Thanks again for everyone who participated.

Busy girl

Casey is getting back to normal. She started PT again this week and we will get back to OT and cranial next week. We had our 1 week surgical follow up yesterday. The doctor said that everything looks great. He was really happy that she was able to go home only 2 days after the surgery. I think that 2 days is better than any of us had expected. That just goes to show you though, Casey is one tough cookie :)

We have an ENT follow up on Tuesday. Everything was so crazy with her feet that we never had a chance to talk to ENT before going home. I am sure everything is fine, but it will be nice to hear the details of the procedure.

We have been extra cautious of positioning Casey to make sure we don't add any pressure to her wounds or anything. I did a little research to try and get a better idea of what I should and should not do. I didn't find what I was looking for, but I did find a good site that talks about the specifics of Vertical Talus for anyone that is curious. Once we get the cast off we will post some before an after pictures too.

We are part of a handful of groups in the LA area for different complications with special needs children. The UCP as well as the Jr Blind are having Halloween parties later this month. We are going to dress Casey up like a mummy and try to go to at least one if not both parties. Next month she has a friend turning 2. So she has that party as well. Casey loves parties so the next few weeks should be fun.

Speaking of fun, Molly Gallagher (a friend I used to work with) is hosting a spa party this weekend in Austin. She has generously arranged for 30% of the proceeds to go towards Casey's fundraisers. I wish we could go. Molly and Megan (my sister) have promised to send me lots of pictures. I will post them as soon as I can with full details on all of the fun.


This is a picture I found from before surgery. It was too cute not to post.

Recovering

Casey seems to be very happy to be home. She is starting to get back to her usual self. She has found a way to roll her upper body so she can still get her face smooshed into things. We have figured out ways that we can hold her with out hurting her. As anyone who knows Casey will tell you, she is a huge cuddler. Her first night home she had a hard time getting comfortable. When the meds didn't seem to do the trick we picked her up and she went right to sleep. Last night was a little better. She woke up a few times in pain, but not as many as the night before. We still have her pretty doped up to try and reduce her pain as much as possible. Hopefully over the next few days her pain will let up more so we can slowly start cutting down on the meds.

We take Casey in for a follow up with Ortho on Thursday afternoon. Her doctor has an office in Beverly Hills as well as Children's. We are going to do all of her follow up stuff in the BH office so we don't have to drive as far.

We will post more updates soon.

Surprise, we're heading home!

Casey had an awesome day and she is being sent straight home from the
ICU instead of going to the floor unit first. We are very excited to
say the least. We are loading her up now and should be home in an hour
or so!

Little Rooster

Would you look at the cutie showing off her long hair?!

Casey is doing good this morning. Last night she had some minor heart
irregularities that turned out to be a fluid/electrolyte balance
issue. We have seen this during other hospital stays, so when they
said they needed to give potassium and a couple other things, it was
no big deal. Her latest labs look much better and her heart is fine.

If things continue at this pace, we will most likely be going home
tomorrow. They started her food slowly and we should be up to a normal
rate there by the end of the day.

Tube is out

They extubated late this morning - they have to almost stop pain meds during this just in case there is trouble breathing. Casey struggled a little, but eventually calmed down and now she is doing much better. No word yet on when we will move out of ICU and onto the floor unit - it doesn't look like today, but we are one step closer!

Surgery done!

Casey is finally out of surgery and settled in ICU. Things took a little longer than expected, but everything did go well. She is still intubated, but is on low "pressure-assist" mode with minimal oxygen, so they are optimistic that she can be extubated in the next day if she continues to do well. We will try to post more when she starts to wake up and we know more.

At the hospital

Casey is sleeping and we are in the waiting room at Children's
Hospital. Her surgery is scheduled for 5 hours starting at 9:30am PST,
so we will post more afterwards when she is settled in ICU.

Green Light

We are cleared for surgery on Tuesday. We do not have a time of day yet, but Casey will get her feet and ear tubes done in just a few days. We have made sure that everyone is VERY aware of previous issues as well as all of her current risk factors. Our biggest concern is still anesthesia. They do not assign the anesthesiologist until the day before the procedure. However, they have taken all of our info and are going to be sure that Casey does not get a random anesthesiologist but instead will get a senior very experienced one. We should know who it will be on Monday and then we will have time Tuesday before the surgery to talk to them in person.

I will remain a basket case until Casey is back home. I do feel a little better about the staff being properly prepared for Casey.

We are planning on taking a computer with us since we are going to be staying at the hospital with Casey. We will take turns taking breaks. There is a coffee shop across the street with wifi that we will use to check in. One of us will post after surgery to let everyone know how it went. We will also try to process the fundraiser emails at least once a day.

Please say a prayer, think positive thoughts, cross your fingers, do what ever you think will help to insure the surgery goes well and that we get Casey back home as soon as possible. We will do our best to post updates as often as we can.