Spaghetti

Respite

I may have mentioned that last month I began the process of getting some respite care. Army Community Service has a respite program though which respite care is provided for qualifying children at no cost to the family. It does seem like a great program but it's been quite a process to get things started. The doctor had to complete a 10 page form, her school teacher, physical therapist, occupational therapist, and speech therapist all had to complete various forms. I had to supply a copy of her IEP. These documents were reviewed by medical administrators who then forwarded them to Army Community Service. We then had a home visit with the respite care coordinator who evaluated Olivia and officially determined her "eligible." He then used a a formula (his word not mine) to magically determine that based on various factors we qualified for 32 hours of Respite care a month. Of course a board had to meet somewhere in order to make this whole thing official. It has been quite the process. It seems like a lot of hours to me at this point but I guess that's a good thing. If we had a family member living near us they could become our respite care provider but since my husband is in the Army and we've moved 6 times in the last 4 years I'm not sure how that's relevant. They did give me a 4 page list of qualified respite care providers in the area. I have spent some time speaking with several of them over the last couple of days. We're in the process of finding people that will be good fits for Olivia and our family.

This afternoon we met J. She was a special education teacher for over 20 years and has spent the last 15 years working as a play therapist. Olivia seemed to enjoy meeting her. J took copious notes during our meeting, it was an absolute pleasure to talk with her. She will be playing with Olivia every Friday morning. Peter and I will have 4 hours to ourselves. My head is just spinning with ideas for me and my little boy to spend quality time together. I am also very happy to give Olivia this time to just play, without any other purpose, no goals, just fun time for her.

Rough Day

Today was a rough day around here. Olivia's health is good but cognitively she's all over the place. It's review time----she's being evaluated by the physical, occupational, and speech therapists for routine evaluations. It's also IEP review time. I can't help but think about where Olivia was several months ago. In September we were thrilled that Olivia was released from the hospital, we were actively working on potty training, she was still using words and hadn't lost any throughout the transplant process. She loved doing puzzles and was continuing to learn new things. I don't know what happened between November and June but she is not the same little girl. It's devastating. I love her dearly and it's terrible to watch her slipping away. I am really doubting myself lately. About 6 weeks ago we noticed that Olivia seemed to be very angry, she was becoming aggressive, she was biting and hitting people. I make a conscious effort to back off, to not push her all the time, I took a step back from my "therapy mom" personality and focused more on being a loving, playful mom. Today Olivia ripped a page out of Peter's baby book. I was devastated! I was angry and depressed. I was mad at myself that it was in an area that she could get too (the bookshelf in our living room). I was angry with myself for not being thankful that she's able to run and walk around and pull books off shelves. I put Olivia in a time out. She hasn't been in time out in weeks, I wasn't sure that she was getting the concept of time out so I stopped using time out about 2 months ago. Of course the time out today didn't make a difference to her at all. She was oblivious and had no idea why I was so mad at her.

Today sucked and I'm glad it's over. I'm tired and I'm still angry and I hate Sanfilippo syndrome.

On the Horizon

Last summer was spent driving cross country and then living in the hospital with Olivia. There were weeks at a time when I didn't get to even breath the outside air last summer, only the ultra purified and filtered air of 5200. It's an understatement to say that we have big plans for this summer. Mike's unit here doesn't go to the field nearly as often as other units he's been with (but he does jump out of planes on a weekly basis so I guess it's all a trade off). The good news is that since he's not in the field for weeks at a time we're able to plan some family fun activities!

June

• Durham Bulls Baseball Game (thanks to a great package deal on Groupon.com)
• Pool Time at the neighborhood pool
• Picnics and Paddle boats in the park in our neighborhood
• Summer reading program at our library

July

• Possible Weekend trip to visit Mike's brother in Washington DC
• Week in Durham for Olivia's 12 month post-transplant studies
• Durham Bulls Baseball Game
• Week at the Beach

August

• Trip to Houston/New Orleans to visit family and friends and my Grandmother's birthday
• Durham Bulls Baseball Game

I'm also going to try to make a fun summer beverage each weekend. We celebrated Memorial day with "Beeritas". They were super easy and pretty yummy. We mixed one can of the frozen margarita mix, 3 beers, about 5 oz of tequila, and juice from 1 lime. Served in a cold mug with a salted rim. It made an enormous pitcher, we each had 2 and there's still plenty left over, maybe it will still be good this evening....

I'd love to hear what everyone else has planned for the summer. And if you have any fun summer beverage recipes I want those too (alcohol or non-alcohol)!