Thursday, March 25, 2010

Crazy Days!

This week has just flown by; for that matter 2010 has flown by so far. Next week is already April!!! My baby is going to be 4.

Tim got all of the demo done in the master bath over the weekend. The crew was supposed to start Monday. They got held up on the previous job so it was delayed a little. They showed up around 5PM on Tuesday. With the bathroom in shambles and mess all around we have moved out of the master. We have all been staying in Casey's room. We went from all 3 of us being in a King to all 3 of us sleeping in a full. It's a bit cramped at night.

They have been jack hammering the drain out all afternoon yesterday and today. It is VERY noisy. Casey has been hanging out up in my office away from all the noise and mess. She seems to be adjusting okay.

On Monday Casey went to the cleft clinic. It went well. I really like the dentist. Anyone looking for a special needs pediatric dentist should check out Dr. Jacobs. She was so good with Casey and totally understood our needs and concerns. We met with the plastic surgeon as well. We did not have a lot the we needed from him so it was more just an introduction. We are going to back in a couple weeks to see just the dentist and get Casey's teeth cleaned. Then next time she has a procedure planned we will piggy back a full cleaning at the same time.

On Tuesday I had Casey's ARD. I met with her home therapists and school officials to set up a plan for next school year. There are not any real changes so the ARD was pretty quick and painless. Everyone is really happy with her progress. For now we will just stay the course.

On Wednesday Casey saw her Ortho. She was is a BAD mood! She threw a fit the entire way and while waiting. She had NO interest in sitting in her chair. As soon as we took her out she calmed down. Then when the visit was over and we had to leave (go back in the chair) she got all worked up again. It made for one very long morning. There were no surprises with the appointment. The doctor likes to keep an eye on Casey's spine and legs/feet. So for so good. He said as she gets bigger we will have to start weighing options to getting her legs bent. Mainly in order to allow her better and more seating options as she grows. For now he likes how she fits in her chair and said it is not something we need to think about just yet. He is helping us get Casey a new bath seat (with wheels). This is going to be great to use with the new shower. He is also helping us get Casey a feeder seat and some medical positioning wedges to use at home.

Last night Casey's respite nurse (Laura) came over for a bit. Tim and I were able to get out and have dinner together. It was a nice break from the renovation and crazy schedule.

Casey went swimming this afternoon (water therapy). She did really good. She was much better in her chair today too. Thank goodness. Next week we just have therapies- no extra doctor appointments for Casey. The renovation should be past the jack hammer portion soon and even though it won't be quiet it will be quieter. I think that is about it for now. As always we hope everyone is well.

Tuesday, March 16, 2010

Back to Normal

Things are finally settling down a bit for us. Casey has gotten through most of her doctor appointments. It seems like all of February we were just in go-go-go mode.

We went a couple weeks with just Monday and Friday nursing after we let our mid-week nurse go. Last week we started training a new nurse to cover the mid-week shifts. She worked Tuesday and Wednesday last week. This is her schedule for March then in April she will pick up Thursdays too. So far it is going well. She is getting the hang of suctioning and Casey's sounds. No one gets all of Casey's needs on the first day. She is doing well, and Casey seems to like her. Today is her first day where I try to stay near by, but let her run the show.

This is spring break week in Austin. All of Casey's home therapies are through the school so she has a pretty lite week. Her water therapist went on vacation too. The only thing on Casey's schedule all week is her OT at Dell later today. It will be the new nurses first car trip with Casey too. The car is always a big deal. Casey still HATES the car.

We have been working really hard to get the bathroom renovation started. Tim and I had to pick out and buy all the tiles, paint, fixtures, counter, sink, window, etc. We have most of it bought and the rest we are working to finish up this week. The construction crew is set to start on Monday. Tim is planning to get a head start on the demo over the weekend. I guess as soon as he starts Casey and I will move upstairs and stay out of the way until it is done.

We have set the house up so that all of Casey's stuff is downstairs. Her nurses have never even been upstairs. It is going to be a little cramped to have us all in my little bedroom/office area for a few weeks. It will all be worth it though. I can not wait until the shower is done.

Casey goes back to her busy schedule next week. All of her therapies are back in place. She has the cleft clinic on Monday (I am actually kind of excited to hear what they have to say). Again, Casey is not cleft, she just has some pallet deformities. Tuesday is her ARD (school services review). We will find out if she gets to start her "school" stuff next year or if we wait another year. Her school will still be at home. Casey's school stuff will add 4 hours a week of someone coming in working with her. For her it will be a lot like additional home therapy sessions. It will very likely be her vision teacher. Casey loves her vision teacher. Then Wednesday Casey has ortho. It is possible she will get new AFOs this year. I don't expect any big changes from the ortho clinic. They like to just check her spine and general physical development every 6 months or so.

We are planning our trip to Morgan's Wonderland. I can not wait to see Casey's face. I think she is really going to like this trip. The park officially opens on 4/10/10. Anyone out there with special needs kids (or adults) should check it out if you have not already. This park is such a great idea.

I think that is about it for now. We will post some pictures as we get the renovation going. As always, we hope everyone is well.