Little Room

We had a nice surprise yesterday. Casey's new vision teacher came out to meet Casey and Casey's ECI manager. We expected just a quick visit to touch base on what Casey's previous teacher was working on. However when Clair (the new teacher) and Clair's boss came they had a big bag with them. Early this summer Casey's previous teacher ordered a Little Room for Casey. We did not expect it for a while. The big bag was a Little Room. They put it together and Casey seemed to really like it. The idea is pretty simple. Basically you want to narrow the field of vision for visually impaired children. Then in the small space you want to surround the child with visually motivating items. Anything that you think would/could motivate the child to reach, watch, or react in any way. Casey hung out in it for a little while. She was looking around a lot and making lots of little sounds. I think over time this will be a great tool for Casey.

We were planning on going to an ECI playgroup this morning. Sadly I think we have to pass. Casey has a bit of an ear infection. She has been up a lot at night and really tired during the day. Even though it's not contagious I think we will probably just keep her home and let her rest a little more.

Casey's PT was scheduled to work through next week. She is due later in September. I called and left her a message to cancel Casey's session this week (due to her ear infection). She did not call back and I found out yesterday that around the time I left her a message she was having her baby. He came a little early. Casey's PT and her son are both doing well. We would like to say congratulations and welcome.

Book Worm

I don't have any news to post, just could not resist this picture. Casey has become such a little book worm. She loves to read her stories. She will read for a little while then make noise when she wants someone to change the page for her. Too cute!

Also in this picture is her new bracelet. This is really funny. Tim went to the expo at the race last weekend and stopped at the Croc booth. They were giving out child wrist bands. It's hard to see details but she is wearing a dark purple Croc sweatband on her wrist. Tim gave it to her while unpacking and she loves it. She won't let us take it off. Ellie is wearing the other one. I think it is more about Daddy came back after being gone for a few days and gave her a present than it is about the actual bracelet. Regardless, she loves it. She is so silly. Anyway, just wanted to post the cutie reading her book. As always I hope everyone is well :)

Fun Weekend

Tim got home around 11 last night. He was exhausted from traveling. It sounds like he had a really fun weekend in Chicago. He got to spend some time with family and friends. He did great on his swim and started out great on the bike. He had a bit of a spill about half way through the bike course. He is okay, just a little banged up. He walked his bike back to the transition area and waited for his brother (who also had a flat tire on the course). They finished the run together. I have been tyring to get the webcast of them crossing the finish line, but there seems to be a problem on the site. Hopefully they will get it fixed soon. We will post pictures of the race and his trip soon.

Casey and I had a busy weekend too. My mom and John came in on Saturday and stayed until Sunday afternoon. My grandparents came over on Sunday for lunch too. Casey was a little angel all weekend. She read her stories, did some playing, and got lots of attention. She was so good, she was not fussy at all.

Casey tried really hard to wait up for Tim to get back last night. She ended up giving up and crashing around the time Megan left to pick him up. When he came in she was totally out. This morning when she woke up she got to hang out with Daddy for a little bit. She is such a Daddy's girl.

Casey's nurse is here today. We had to go over to the clinic this morning to have some routine labs drawn. That is NEVER fun. Casey is so stiff that it is really hard for people to draw blood. The guy that I was told to ask for was not there today. The 2 ladies that were there were nice, but they had a hard time. Casey was really upset. We got her home and she is just relaxing now. Poor baby, I hate having to have labs done.

We don't have a lot going on this week. Casey meets her new vision teacher on Thursday. That's about it for Casey's calendar this week (other than usual therapies).

Chunky Monkey

What a HUGE day!!! Casey had a GI appointment this morning and she has hit 26 pounds. Wow, that is awesome. The first year plus we could not do anything to get her to put on weight. Her doctor actually warned us to be careful and not let her get fat. He was serious too. I can't believe Casey is finally catching up. No one has measured her length in a while, but I am sure she has been doing some catching up there too. Everyone that sees her (even if only after a week) comments on how long she is getting. I am so happy she is finally growing. Her teeth are still moving right along as well.

Casey has been hanging out with her nurse today. They have had lots of fun reading stories and playing. It is raining and nasty here today so we didn't get out to do anything fun. Maybe next week we can get out and do something while her nurse is here.

Tim is leaving Friday morning for Chicago. I am sure he will have a good time. One of these days Casey and I will be able to make the trip too. Until then we will just go with him in spirit. I will post some pictures from his trip when he gets back.

Casey's Aunt Molly and Cousin Riley may come in on Friday and her Cappy and John will be here Saturday. My mom (Cappy) is coming in to help while Tim is out of town. I think everyone else is just getting in one last summer trip while they can. It will be nice to have everyone around this weekend. Hopefully they will keep Casey's mind off Daddy so she doesn't miss him too much.

Neuro

We just got home from this mornings appointment with Casey's neuro. It went really well. Casey was very good there and in the car going and coming. She sat in her chair while we were there and she did great.

We talked to the doctor about the spasticity clinic. Since she is the main neuro in the clinic she told us that Casey would not really get any additional benefit that she is not getting already by seeing her during regular clinic hours. She does want us to try a new medication. Since Casey has not responding to the spasticity meds she wants us to try something new. Recently they have started giving kids like Casey a medication that was previously just used for Parkinson's. She said that many of the kids have seen good results. Tim is going out this afternoon and will get it filled. It would be great if this can loosen up Casey's legs some. Other than the new meds there is not really anything to report. We will start out with a small dose and work our way up to a full dose. We won't likely have updates on how Casey responds for at least a couple of weeks.

Casey is hanging out with her nurse today. She has speech later today. Casey had a fun weekend. She got to hang out and watch the Olympics with Daddy. We had some people over on Saturday and she always loves company. School starts back up soon. With the kids back in school the pool should be less crowded so maybe we can get some trips in to the pool soon.

ENT & More

We finally have the table top for Casey's chair. Now not only can she sit and hang out, but her toys can come a long too. She seems to like having her toys right in front of her.

We just got home from Casey's ENT appointment. I have mentioned before, but I will say it again, we have been really impressed with the team of doctors we are working with here in Austin. The only one we don't have great things to say about is her eye doctor, but we don't have to see him often so it doesn't really matter. We really like and totally respect her pulmonary and ENT. They have just impressed us a lot.

The ENT today was checking on Casey's tubes. She has been really fussy off and on lately and we were worried that the tubes were coming out. We have a little home otoscope to check up on things and we could see the tube on her right looked very different. It was still there, but the location seemed very different. I thought the tube had come out and was just working its way out of her canal. When he checked he said that it is still in the drum, but on its way out. He expects that the right one will come out in the next month or so. He thinks the left one may make it to the end of the year, but he guesses it has about 3 months left. Here's the good news...

The doctor wants to let them come out and give Casey some time with out them. If she does as well as we hope she does she may not have to have more put in again. That would be GREAT!!!! The doctor was very aware of our nervousness when dealing with anesthesia and talked to us about options if we do need to have them redone. He knows the anesthesiologist and will help us get the right one for Casey. He will also help us work with them to possibly avoid intubation. That is WONDERFUL to hear. We did not even have to push, I didn't even cry, he just knew that he should be on top of it.

As for Casey's fussiness, he thinks by looking at her mouth that it was most likely related to teething. Her teeth have been growing a lot so that makes sense. Anyway, we are home and Casey did really good. She is resting now. We have some friends coming over tomorrow so she is just taking it easy today.

We have a neurology appointment next week. The new ortho we saw a few weeks ago wants us to look into getting into a spasticity clinic. Casey's neuro is the head of this clinic (or at least a very intrical part). We are going to talk to her Monday and see if she thinks Casey would benefit from the clinic or if it makes more sense to just stay with her. We are not sure Casey is spastic. They have tried many spasticity medications and treatments and we have not seen any benefit from any of them. We will talk with her doctor on Monday and see what she thinks.

Tim is getting ready for his race, just a few weeks now. My mom is excited to have an excuse to come hang with Casey so she will stay here and help out while he is gone. Hopefully some day soon Casey and I can go with Tim.

Where did the last week go?!

I blinked and somehow lost a full week. That keeps happening. Tim has gone back to work. I really got used to having him around all day. Sadly he ended up having to go back to work on his birthday. We celebrated on Thursday though, so it was not too bad.

Casey's pulmonary doctor called Wednesday. We had gone in a few weeks back to get a well culture (a baseline to show the doctor the bacteria that Casey has on a good day in her respiratory system). Anyway, the doctor's office called to say they reviewed the test and that Casey had some bacteria that she should not. They wanted to start her on a special medicine called Tobi. We have to give her this medicine through a breathing treatment twice a day. It takes 20-30 minutes to give it to her, but it doesn't seem to bother her at all. We will do this for 28 days, then 2 weeks after the 28th day we have to go in for another test.

Casey has been working hard in her therapies. She has really been trying to move her arms more this past week. She has been doing her stander in the mornings and her chair in the afternoon too. Some days she tolerates them better than others. We just found out last week that her vision teacher has taken another job. Her last session with Casey will be next week then we will start working with a new girl. Hopefully Casey likes her and takes to her quickly.

On Saturday I went to a birthday party for an old friend of mine. Her little boy Owen was turning 1. I had not seen some of her family in 10+ years. I couldn't stay long. It was great to visit with them for a while. Everyone wanted to hear all about Casey. It was an outside party and it was HOT. There was no way Casey would have gone for it. She is not adjusted to the Texas heat just yet. I guess she is still a California girl.

We have ENT on Friday. I am pretty sure Casey's right ear tube is out of her drum. We should find out on Friday if they think she needs to have another pair placed.

We had a nice surprise today. Around 8:30 this morning my mom called. My brother had been visiting her in Houston with his oldest son. They were supposed to fly back to Minnesota this morning. However, with the hurricane approaching the Houston area many flights were being canceled including theirs. He has to get back for work so they managed to get them onto a flight out of Austin this afternoon instead. So my mom called to say they were coming over. Casey got to meet another uncle and cousin. My grandparents came over as well. We woke up expecting a quiet day and ended up having a busy day. Casey loves visitors. I brought the camera down and then totally forgot to grab it while they were here. It was a short last minute visit, but it was really nice to see them.