So Close

Looks like surgery is going to be on the 9th instead of the 2nd. We were so close to having those feet fixed. Casey, Tim and I have all been pretty sick this week. We talked with Ortho today and they said that with her being high risk already that they did not want to take any chances. So to be sure that Casey is safe and that the surgery goes as smoothly as possible we have pushed back one week. The good news is that I called ENT as soon as we got home and they will still be able to combine the two procedures.

We are talking to Casey's pediatrician now to get her on some meds for the week. Tim and I decided to reduce additional risk we are going to put the house on lock down. We are going to sanitize everything and cancel everything we don't HAVE to do for surgery. We will try to give Casey as much time as she needs to get rested and recovered.

On Wednesday we met with Pulmonary. We were feeling less than great, but not nearly as bad as we do today. So when we met with them they gave Casey the go ahead. We have increased her breathing treatments to just get her airway nice and open, but other than that she was doing really good. They did confirm one other thing we were kind of expecting. The pulmonary team is suggesting that with Casey's past respiratory issues that she does not o directly to recovery and the floor after surgery. Instead they would like her to go to the PICU for at least 24 hours to be closely monitored. They also said it was possible she may need a little extra time on the vent. This is not a bad thing. We were actually really nervous about her going to recovery. If she goes directly to PICU we know the nurses, they know Casey and we feel very comfortable with the level of care she gets. And leaving her on the vent and slowly ween her off instead of just pulling as soon as surgery is done is much safer for her lungs. The other thing pulmonary confirmed is that the standard 1-2 night stay is a little optimistic for Casey. With the added PICU time we are looking at more like 3-4 nights.

We were not surprised by any of the things we heard this week. We expected PICU and more time, and after getting sick we figured they would postpone. We really want Casey's feet fixed, but we are not interested at all in putting her at any additional risk. We want her safe. So that's all for now. Time for us all to take our meds and get some rest. I will post more next week when we start to get things rolling again.

Gordita

First of all I need to say thank you to all of Casey's supporters. The response to her new website has been nothing short of amazing. We really appreciate everyones support. We have the last few features online now. Be sure to sign the guestbook to let Casey know you were here.

Now on to Casey news...
Casey has finally hit 20 pounds! We had a GI appointment on Wednesday and they were very impressed. We had not seen her normal GI doctor in a while and when he came in and saw her the first thing he said was "Hello little gordita." Casey has been doing really great with her food and it shows.

Yesterday Casey and Cathleen (her respit nurse) got to hang out for a few hours. They played really hard. When Tim and I came home Casey crashed.

We have a very busy week this week. With surgery coming up in just over a week we have a ton of preop stuff going on. We have to meet with pulmonary, anesthesia, ortho, and of course all of her regular therapies. I guess being busy is a good thing. It will keep my mind off of the surgery for a little while. I am really starting to stress about it, but I am sure everything will go well. On a good note, they did confirm that they could do Casey's ear tubes during the same time. That means one less anesthesia.

Other than preop stuff we are going to just try to relax a little. I will post more after we have finished up preop and are getting ready for the surgery. I hope everyone is doing well.

caseybarnes.org

Casey's new site is online. We are still working on a few features and minor changes, but the bulk of the site is ready to go. Please use www.caseybarnes.org for Casey's site. Over the next few days we should be getting everything activated and a few minor tweaks worked out so you will see a few changes. Enjoy the new site!

Web site changes

Just a quick note to all that we are making a lot of changes to the web site. In addition to changing the web site name and layout, we are setting up a way to take donations as some people have asked about, to sell items like "Casey" bracelets, and to generally make it easier to tell Casey's amazing story. Please bear with us during these changes...

Wow, it's been a month already....

Things are finally getting back to normal. Casey has been really busy, but all good stuff. Tim is feeling a lot better and has been back working for a little while now. He started his PT a couple of weeks ago and is doing really good.

Casey has her eye appointment a few weeks back. Overall it went really well. They suggested that we start vision therapy twice a week. They did say that she can see. We have some exercises to do to try and get her to start blinking. The therapy will help her focus and make sense of what she is seeing. I should get the report this week then pass it on to the regional center. If all goes smooth we should start her therapy early October.

Casey went in for a hearing test. They suggested that we try hearing aids. They can't be sure if they will help, but figured it was worth at least trying. They said her tubes appeared out and that she had some fluid in her ears so they referred us to ENT as well. Surprisingly I was able to get a next day appointment with ENT. Her previous ENT we really liked, but she was out on maternity leave. In her place we saw another doctor that was not a child ENT. I was not crazy about him at all. When I got home I told Tim and we decided to get a second opinion. We took Casey into an ENT at Children's hospital this morning. We are feeling much better now. He confirmed the tubes had come out. They were still in the canal, but they were no longer placed in the drum. One was pretty far out so he removed it completely. He is going to try and get her scheduled for having them redone at the same time as her foot surgery. It would be great if she could get them both done at the same time. The less sedation we have to put her under the better.

While we were waiting for the second opinion ENT we went ahead and moved forward with the hearing aids. They were able to get her in right away. She really did not like having the molds in her ears to get the impressions. Luckily it was just a few minutes in each ear. They make very kid friendly aids now. She was able to get pink ones, and the inner ear part is a sparkly pink. They are so cute. So far we have not noticed a huge difference, but it has only been a little more than a week.

Casey's original PT came back from maternity leave just as her temporary one started her maternity leave. The timing worked out perfectly. Casey was really funny when Yvette came back. She has not seen her in 6 months, but she definitely remembered her. She acted all shy and hid her face at first. Casey is NEVER shy, so I have no idea what that was all about.

We have a GI appointment next week. Casey is nearly 20 pounds now. I am sure the GI team is going to be very impressed. We have a few other appointments over the next few weeks to get everything ready for her surgery. Just a little bit longer and her feet will be fixed. I am not looking forward to be in the hospital, but I am looking forward to her getting her feet back. I think it is going to make a huge difference.

Casey is going to Cranial twice a week now, and we have OT once a week now. With the twice a week vision therapy starting up soon she is going to be a really busy girl. We are hoping to get OT increased to twice a week as well. Thankfully a lot of the therapies come to us.

Other than medical/therapy news we have been pretty busy too. Casey loves the pool so Tim found one for her that we could put up on the roof. It has a filter and cover and everything. He is still getting it all set up, but she has gone in a few times. She loves the water.

Tim took a very short (less than 24 hours) trip back to Chicago. He was able to get in and surprise one of his brothers at the Chicago tri. He had a really good time, and Ken was very surprised. Hopefully next year he can do the race with him.

I was able to take a day off last weekend. It was really nice. I had a massage, haircut, did some shopping and tanned. I missed Casey a ton, and decided to go home a little early. It is always nice to get a little time for myself.

In family news, my mom is getting married. She announced yesterday that they have set a date. They will be getting married March 8th in St. Thomas. Congrats to them both!