Busy Week

Last week was a busy one. Two of Casey's four day nurses are changing their schedules for the summer. Her Monday nurse's last day with us was this week. She is going to cut her hours back over the summer to spend some time with her kids. Casey's Tuesday and Wednesday nurse also finished this week. She is going to be in school full time over the summer. It worked out really well though. Casey's Friday nurse has been working as a NICU nurse in Temple. She just finished up there and has decided to enjoy her weekends and evening over the summer. She is going to take most of our open shifts. Then at the end of the summer she is planning on taking a local NICU job. I hope that it works out so that Casey's previous nurses are ready to come back at the same time.

On Wednesday Casey had an appointment with pulmonary. It went well. It was just a check up. There are no changes to Casey's pulmonary plan for now.

On Thursday Casey had her MRI. I was a nervous wreck. The last one went so bad so fast. I called and went up to the facility before hand to make sure they were ready for all of Casey's needs. I was really happy with how it went. They let me lay on the table with Casey. When she would start to get junky they would stop the machine and get her out right away for suctioning. Casey did great. There was one sound she did not like much. She did not get upset really at all. I was very proud of her. What a big girl :) They had to do contrast, which means she had to have an IV. That went well too. They brought in all the tools and were able to get it on the first poke.

Casey's vision teacher made some Power Point books for her. We have a little attachment that allows up to plug her switch into the computer. She loved it. She was able to change the slides all by herself.

Casey's twitching did not resolve at all with the increase in her seizure medication. Her doctor called in a new drug to try on Friday. We will give this new drug a couple of weeks and see how she does. I am guessing once the twitching gets under control we will need to set up another EEG. Our goals for the summer are to work on feeding issues (total volume, rate, leaks, etc) and to get the seizures under control. Of course, we will have to get as many trips to the pool in this summer too.

I will post more soon with updates on the seizures. We hope everyone is doing well.

Site Updates!!!!

Check out the new Reviews section. We have also updated our Photos section.

The "Reviews" section has all of our current items (and some old). As we get new stuff we will be sure to add them. We have grouped them easier page navigation. We list out pros, cons, cost, and any our opinions on the products. We hope this is useful for other parents. We also indicate if an item is typically covered or not.

The "Photos" section is no longer a static page. Instead of the dozen pictures we had there before it will now randomly display a selection of old and new photos. Each time the page is refreshed the photos will change.

No More Ear Infection

We just got home from Casey's ENT. He was very happy with her ear. The infection has cleared up nicely. He said that over all she is doing great. The cholesteoma is stable and the right ear is still doing well with out a tube. We have to stay on top of it (every 2-3 months we have to go back). I would much rather drag her up there every few months than put her through a huge surgery.

We sort of have Casey's MRI scheduled. We are going to go up the morning of 5/27. We went back and forth a few times on where. One place said it was either full under (intubation, etc) or no sedation. Because of her age they said no sedation is not an option for her. We found another place that would do light sedation. However after I talked with them about all of Casey's needs and all that good stuff they did not think light sedation was safe for her. I told them full sedation is not an option. The test is not worth that risk. The only other option is no sedation. They agreed to try it. We will head up there next Thursday and see how it goes. I plan to give her a little something before we head of so she may sleep. I just can't count on that though. If it does not work out then I guess we just won't get an MRI. There are other ways they can see her brain. The image may not be exactly what they want. If that is all we can do though, they will have to just figure it out.

We are very close to having the site updates/modifications ready to go. Check back in the next few days and hopefully they will be live. Until then, have a great rest of the week!

Updates

On May 3rd Casey went in for her 4 year appointment. This was her first full appointment with our new pediatrician. It went well. Casey got 3 out of 4 of her vaccines. We opted not to get the chicken pox vaccine. Last time she had a really bad reaction. She did get her DTap, MMR, and Polio shots. She was such a trooper. She got a cool sticker on her way out for being a big girl.

Casey had her first teeth cleaning on May 5th. She is so funny. I think she is the only kid I know that loves going to the dentist. She had a great time. She has always likes oral stimulation. The dentist and Casey got along great.

Casey finished up her ear drops last Wednesday. Her ear is looking much better. There has not been any more drainage. It smells much better too. I think her ear has healed up well. We go back to her doctor this Wednesday. I am pretty sure he will be happy with the result. He gave us plenty of refills on the drops. Next time she starts to drain a lot we can start the drops right away.

On Monday Casey went in for her annual EEG. We noticed around the holidays (when she got sick) that Casey started twitching. She seemed to twitch with dirty diapers mostly. Over the past few months the twitches went from BM's, to all diapers, and now she is also doing it for no apparent reason. They are not violent, or full on seizures; just odd. During Casey's EEG she did twitch a bit. This is kind of good. They were able to capture it on the test. They also recorded video so that the doctor could see what Casey was doing.

On Tuesday we went back to see the neurologist. She said that not only during the twitches, but through out the entire test she saw a lot of activity. The past 2 years Casey's EEGs were getting better. The doctor increased Casey's current seizure medication. We are watching her for 2 weeks. Then if we do not see any improvement we may try a new medication. We are going to schedule an MRI as well. Casey has not had an MRI since she was about 10 months old. I don't expect them to find anything. It is not a bad idea to check though.

Casey is finishing up her school therapies this month. We may add an extra session at Dell over the summer just to keep her progression on track. We have a couple routine doctor appointment coming up this month and next. Casey has been busy so far in 2010. We can't believe it is already mid May.

We have some family coming in town this weekend for all of the May and June holidays and birthdays. I am sure Casey will have a great time. She loves visitors. I think her pal/cousin Riley will be coming too. She and Riley always have lots of fun together.

I think that is about it for now. Tim and I are working on some new features for the site, as well as some improvements on others. Check back soon. We hope to have them in place soon. As always we hope you are all doing well.

Pictures

Here are some pictures I have been promising...

Casey at her Make-A-Wish interview

Casey's birthday party

Bathroom before

Bathroom after