Wednesday, November 17, 2010

Update

I have not felt the words lately. Things have been happening, all is fairly calm, but I have been just kinda pooped out. But I thought I should do a few updates.

  • Hezekiah turned 9 last week and Zeke turned 8 yesterday. My kiddos are now 8,9,10,11. Easier to say and remember. We went out on Sunday to Olive Garden to celebrate Zeke's birthday and I forgot to give Akila her meds. She was completely nuts in the van and the first half of the restaurant she was bouncing off the walls, until the meds she had when we got some water, kicked in. A good reminder to us that these meds do help greatly. Boys had great birthdays and we are blessed to be their mom and dad.
  • The PCA thing has been fantastic!!!! They have been working for a couple of weeks and I can't tell you how much of a difference it has made in the climate of our house. I feel like it has even helped to improve my relationship with Akila as there is not constant conflict since she has a one on one person giving her complete attention. I feel like I have more patience and energy for her, and also for the other kids. There is usually one or even two evenings a week when they pick her up from school, bring her to dance and hang out with her and bring her home close to bedtime, after they grab a bite to eat. It has been such a blessing!!!!! We are only using up to 17 hours a week, but we have four different women on staff. And they are all awesome! One is a former student, two are friends of hers, and one is a daughter of an old friend of mine whom I miss dearly (my friend Bernard who passed away a few years ago).
  • I have been volunteering a ton at Children's Hospital and Clinics. I was there 6 business days in a row. Three days on one of those Lean committees. That means 8-4:30 for three days working on setting up a process for inpatients to receive a discharge phone call within 24-48 hours of being discharged. Sounds easier than it is. Then I was at a meeting for the Star Studio (their inhouse TV channel) Advisory Council, Friday I spoke to medical residents about family centered care, and Monday I spoke at the new employee orientation. I am back tomorrow for my favorite one, the Medical Home committee. I have been greatly enjoying my time there (although it has been over kill the last week plus, but that is not normal. I am usually there every other week for one meeting/speaking event). Children's is a wonderful place to get excellent care for kids. They have been a real blessing to my family and it is nice to give back. Plus, it is my time to be around adults and use a deeper part of my brain that does not get accessed enough at home.
  • Akila has been doing pretty well in school, and for that I am quite thankful. Her 3 year eval is complete and I am hoping that things won't go downhill as they usually start to do each year in November/December.
  • The morning and 3:00 dosage of Risperidone seems to be working very well. She use to take one in the morning and at bedtime. This time change seems to have made a big difference in her evening mood.
  • As I type, a new dishwasher is being installed. This means that we have replaced all the appliances in this old house and nothing should ever break again!!!! Please.
  • We especially can't afford anymore appliances to break down, as our health insurance is going from $777/month to $1127/month. That is not a typo. It is going up $350/month. This means our van better keep running, as $350 is a car payment. It will also be covering less. I can't say much else about that without risking swearing and getting quite upset.
  • My job as office manager of the dance studio is starting to get busy with costume ordering time, winter show prep, and quarterly tuition due. This is in part what has kept me from having the energy to blog. I get sick of the computer.
  • I have been slowly reading a book called "The Normal One" about siblings of damaged kids. It is pretty interesting, not sure I agree with much of it, but it is very good at giving me perspective and making me think about my 3 musketeers and what we need to be doing for them to minimize negative effects of life with Akila, and try to focus on the positive effects.
  • I got word today from Hennepin County that we are receiving a grant to install a security system so we will be awakened in the middle of the night if a door is opened. I am very relieved. Akila has been sleeping fairly well lately, but that will only last a certain amount of time.
  • I have been thinking often lately about how it seems like Akila has regressed developmentally in the last year. She plays more with dolls than ever and she is drawn to preschool based cartoons. We went to a local hamburger joint this weekend. They had a little section of toys with things like a kitchenette, grocery cart. Akila sat and played with it all the entire meal. It was odd to watch a middle schooler. She then threw a rage the next day when Zeke chose the Olive Garden as she wanted to return to Tooties to play with the toys.
I think that is all for now. Hopefully I will get back in the flow with the blogging. :)

4 comments:

Sheri said...

Good to hear from you!

Dustin did the same thing while in Middle School and regressed. I always thought that maybe it was when he realized indeed how far behind he was and regressed even more.

Thinking of you!

GB's Mom said...

I think the regression maybe due to a higher stress level because of increased demands. Glad the PCAs are working out.

Megan said...

I think of you so often - the school year has been a blur! I have enjoyed reading your updates.

I started reading The Normal Ones, but it quickly became overwhelming to me and I just couldn't keep at it. It's interesting to hear your thoughts on that. Maybe I'll try it again. It's still sitting next to my bed.

* said...

Andrew still plays with doll houses,the people and cars and he is in high school. I think it hit me hard because he did these things as a preschooler and still as a high schooler. He loves it. Wonder how many boys in high school want a new doll house for Christmas.