Last week I mentioned Helen was getting hooked up to a Holter monitor, everything went according to plan. We did end up getting her blood drawn while she was on the monitor because I was able to FedEx the monitor back to the hospital. We didn't have to go back so we took care of everything on the same day. Her thyroid test came back the next day and her levels look perfect, so no adjusting the medicine, YEAH!!! We were about 20 minutes from home (Children's is about 45 min. from our home) when I realized Helen didn't have her bear. I asked the kids if it was in the car and they told me, "No", and neither was the monitor's carrying case which had the FedEx envelope inside of it. We had to turn around and go back, UGH! It was exactly where the kids said it would be, by the video game at the lab, where Helen left it. Can I just say how much I love Children's Hospital?, they are so helpful and nice.
My friend Catherine took the kids for me on Thursday so I could do grocery shopping and also get school supplies. I don't remember having to purchase so many supplies when I was a kid! It adds up when you have 5 kids in school, it took me 3 hours and 3 stores to get almost everything on the lists. Grocery shopping was a piece of cake, usually that's my headache for the day! I need to take the kids to get their gym shoes, I didn't want to do that without them for fear of getting the wrong size and then I would have to take them back!
Sunday 10:30am Mass was for Peter, it was difficult. It was nice though because Catherine's son was the Lector, and she and her husband were Eucharistic Ministers, so they were part of the mass. It was comforting. I didn't think to invite anyone since they all had just been to Peter's memorial. At the last minute I invited a few friends, but of course they couldn't make it because I didn't give them enough notice. I didn't mind, I liked being there in the family room with just my kids, Peter's kids. After mass was registration for school, we are all set, now we just have to wait another week!!!
On Monday I received a call from Helen's teacher, her aide was let go, could I make a few phone calls and see what I could do. I have not had any issues with Helen's school, I know I am lucky, so I didn't know where to begin. I started with Helen's teacher's supervisor, when I got nowhere with her, I spoke with her supervisor. It's all about money, the district is in emergency mode and they are trying to make the cuts where they feel they can. I asked if the cuts were being made in the regular classes also, I was told yes. I told her I understood the situation and I would be patient and wait to see how things go when school starts. I told her if I saw any decline in her progress or I heard of any situation where Helen's safety was at risk, I would be taking the next step towards getting Helen an assistant. In the meantime I have contacted the Arc and have started a relationship with one of the advocates there. She is going to help me along the way, she will be making a few phone calls to make sure Helen doesn't fall through the cracks. One of those phone calls will be to that supervisor I spoke with, so she knows I am not alone. I would try and fight for Helen to have a personal assistant but in doing so I feel her independence would be at risk. I was also told the district had final approval, and they are making cuts in that area also, so it probably wouldn't happen. I will keep you all informed of our progress.
Evan, Sherry's son, is here tonight for an end of the summer sleep over. I just heard him ask my kids, "Are you ever going to sleep? I'm kind of tired." My kids are wide awake, they have been waiting for him since yesterday. My girls have been looking forward to this since I told them they could sleep in the living room with the boys. They are playing like it's the middle of the day and are not showing any signs of slowing down!!! As soon as I am done writing this I am going to set up the blankets and get them into their pj's. I know as soon as their heads hit their pillows they will be sound asleep. So I'm off to send 6 kids off to dreamland!!! (Noah's already sleeping!)
Until next time-