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Monday, October 05, 2009

Firsts: Bus, Pie, First Grade

This is Ellie on her first official day of First Grade. She is growing up.

Next two pictures are of the pie Dave made with Ellie last night after we went apple picking. We found this great, small, easily accessible orchard, Dowse Orchard, and Ellie had a great time and we were able to wheel her right up to the trees. She picked most of the apples!

This is the first pie Ellie has ever made. Dave brought our coffee table into the kitchen and put all the ingredients on it ready to go and easily reachable for Ellie. He used the small dry erase to teach her about the ingredients. She used measuring cups and took flour out of the bag and put it into the food processor as well as the butter. We put the food processor on a switch. Ellie kneaded dough, put apples in the pie, shaped the dough round the edges. She did the spices and everything. Dave is so patient and enthusiastic about her. Even when she has moments of averseness to new experiences he never lets that dampen his sense of fun in the doing things with her! As a result, Ellie had a great time. You can see the E in dough on the top of the pie. E for Ellie, what else? She was very excited when Dave showed her the steaming hot pie coming out of the oven! Dave Rocks!

First time on the bus this morning. In the first picture she is pointing to her car.... In the second she is not so happy about going on the lift. Third picture is of Juan and Marge securing Ellie's chair. Fourth picture is Ellie in the wheelchair van...not looking too happy. Fifth picture, Ellie in the bus with a wall of glass and reflection between me and my only child. Did I prepare her enough for this...apparently not. Dave just called me and reported that the Juan and Marge said Ellie did not cry, but she didn't want to play with her toys and was very quiet the whole way to school. When she got there Dave was waiting and she did not give him her usual huge smile and the happy throwing up of her arms at the sight of him. Instead she was this going to be an issue for her and her therapist later in life...? I imagine she is feeling somewhat betrayed and processing this change. If this makes her unhappy and she does not adjust the 3.5 hours of extra time a day is just not worth it. But I will give her this week to try it... :-(

Saturday, October 03, 2009

Sleep, Bad Meds, and the Bus

September was a blur of no sleep and work. And even now I don't have any business blogging. BUT so much has happened...

First, we figured out that her Protonix, which our insurance company will only pay for if we get it through their compounding pharmacist, was off. Dave took some out of the red bottle in desperation because Ellie has not been doing great since late August when she started this new batch, and discovered it had a distinctly orange hue. He called the pharmacist and they said to stop giving it to her...scary, no? I am sending it to a lab to find out what the heck it is and not putting her back on it. To say this freaked me out is an understatement. I am holding judgement until we find out if it is Protonix or something else...ugh. The whole thing has just made me realize I have to get her off all meds. I have met mothers who have discovered that the meds they are giving their children were made wrong by the pharmacy. CVS lost their compounding license because of errors in making the meds. In some ways it seems like only a matter of time before this happens and one day...I can't even go there. ugh. I wish we could get it through our local pharmacy because they are a mom and pop shop, they know us, they care....Blue Cross Blue Shield paid allowed this.

Since we discontinued the bad Protonix she has been sleeping MUCH better. I also started her on two homeopathics: Nux Vomica, for nausea and indigestion, and Gelesium for it's overall soothing effect on the entire nervous system. It may be working...she has slept through the last 4 nights....but of course now that I write hoping I can replace the meds with homeopathy or anything else, like even healing what is causing her to need these meds...yes, her brain. But, it's good not to forget this is our goal, to help her heal her brain. Since Obama lifted Bush's bans there has been lots of progress in this area spurred on by all the returning vets who have sustained head injures fighting in all the bloody war zones....

Second, Ellie is going to take the wheelchair van to school this Monday for the FIRST time....!
The good here: she is more independent and we get 3.5 extra hours a day (that we used to spend driving her) to work. Since I am always up late doing that work I don't get done during the day, and I am not a trust fund baby, this is a good thing. The fact that I could REALLY use the extra time makes me feel guilty about even suggesting she ride the bus because it's so self serving, which is something I try to put aside being a parent. BUT she is going to be 7 in November. I rode the bus from age 5 on and am none the worse for it, though how would I know, really? See the back and forth? The mind is a terrible thing sometimes...

The manager of the bus company came to our house this Saturday morning to see if Ellie's Rodeo would work in the wheelchair van. His name is Juan. Juan has a big smile and kind eyes. He's a dad. Ellie gave him a BIG smile the minute he walked in the door and he addressed her directly. All great signs. She will be the youngest on the bus and Juan has it set up that she is last on and first off, god bless him! She will have an aid who is trained in seizures and CPR. The other little girl riding the bus has a nurse...seems like it might be ok. We are going to follow the van to and from school on Monday to be there for her if the ride was bad. If she is really upset by it, that may be it. She has riden in a wheelchair van for school trips so that won't be a first. Juan assured me the aid would talk to her and help her with her toys...ugh.

I am equal parts freaked out (about her safety and her emotional and physical comfort) and hopeful that it will be ok. She will be 7. It's time...right? We will see.

Picture: Me and Ellie in Dublin City Center, Ireland this August.