Over the last 3 years(almost) we have made different choices for our family. Many of those choices revolve around Down syndrome. The motto of the Down syndrome association here is that Down syndrome does not define us, it unites us. Well, I have came to the conclusion that I have allowed Ds to define us. Today I am making the choice that I will no longer allow this to be the case. Before we got involved into all of the therapies and services for Sarah we just played. No goal or reason, just good old playing, and you know what....my kids were excelling!! Not meeting IEP goals, not reaching the next milestone, being kids and doing what kids do best, learning through play and interacting with their environment. No, I am not going to stop the therapies or preschool(ok this is up for debate for next year) for Sarah, but at home we are not going to work on specific goals. We are going to interact, play, and just be a kid. A kid who will learn how to dress, how to talk to others, how to eat with utensils, how to be a person, not a disability, not a label, not an IEP. Today we are making new choices.
Thursday, February 25, 2010
Sunday, February 21, 2010
Last week was busy as usual!!! I don't think I would know what to do if I was not running all over the place and being way too busy. The week began great. Sunday we went to church and then out to eat for Valentine's (wow, was that just a week ago? It seems like forever.). Mon and Tues the kids were out of school for President's day and a workday. Which worked out great since it snowed AGAIN! I must say that being from GA I have always thought it would be great to get snow occasionally. Well, let's just say I don't like snow as much as I thought I would. Part of the problem is that we do not get enough snow often enough for them to know how to clear the roads and the people around here seem to think you should still drive 90mph. Which means I tend to stay in when it snows. Of course, Sarah has been so sick this year that I really don't take her out in it and the walls in the house start closing in FAST!
Monday night(or maybe it was Sunday night-I really can not remember now) Sarah vomited all night and about 5am Elijah came in our room with a croupy cough. It was a really long day. Wednesday Elijah went back to school after a 2 hour delay. He was ready to go back. On Tues after nap I picked up Sarah and she grabbed her ear and said owie. So after dropping off Elijah, we headed to the pediatrician. You know you go to the pediatrician to often when you call and say "Hi, this is Robyn" and before you can say your last name the receptionist says "Oh no, is Sarah sick". Yes, Sarah has yet another ear infection. We are on another antibiotic. This did get our rescheduled tube replacement moved from 6/22 to 4/9. Although, on Friday I had a message on the machine from the ENT to call them about the surgery. They were closed by the time I called. They better not be changing it unless they are going to do it sooner!
Let's see, I think we made it to Wednesday morning. Wednesday afternoon, Sarah went to dance and then we went to church. The kids have music and missions on Wednesday. All the way home, Sarah sang as loud as she could "Jesus lubs me, Sawah bible so me, Sawah. Yes, Jesus lubs me, Sawah". On and on for 40 minutes! It was cute the first 5 minutes!!! She was singing Jesus loves me and adding her name to it(We take off the me and say her name!).
On Thursday, both kids went to school and I meet with a friend to discuss the goals (IEP) they have written for Sarah to achieve this year in preschool. Well, when I got her mid-year progress report I really started looking at the goals and realized that they were vague and unmeasurable. Several of them are so vague I do not really know what they are talking about! So, I took an IEP class and then took an online class on writing IEP goals. I have rewritten Sarah's goal and I wanted someone else to look at them for me. After we discussed them, I asked for another IEP meeting. We are going to meet with the school system on Wednesday to discuss the IEP goals, so I have been working on rewritting these as well as developing a way for them to document how she is doing so I get more information on how she is doing at school. I did not realize, but she is still not talking at school. She is saying 2-4 word sentences at home. I am also working on visual and verbal aids for school and at home so we are all on the same page.
Friday, I did the grocery shopping. After school, Elijah had soccer practice after school, then supper. So a quiet day for us.
Saturday it was beautiful out and we enjoyed the sunshine. I went to supper with some of the mom's from the Down syndrome association. It was good to see that others are having the same issues I am with the IEP and how they are handling it.
Now on to this week! I am sure it will be busy too.
Tuesday, February 9, 2010
Sarah is doing so much better. Her rash looks much, much better today. She still tires easily, but that is improving. She is eating again. I was going to let her go back to school today, but school got cancelled again. It snowed about 1 inch last night and then began to sleet and rain. When we got up there was no snow anywhere and no rain, no sleet, nothing! We have had some burst of snow today on and off, but no accumulation. The kids have been....well kids. They have played good and not so good together! We made valentines for the grandparents and now I am trying to get Sarah to nap while Elijah finishes his valentines.
Sarah has this music player that came with an Elmo book that she loves to carry around and play. Mommy likes that she has the independence and can operate it without help(has 3 buttons), but Elmo singing is grating on my nerves! This reminds me of a MP3 player or an iPod. Do they make anything like this for kids that I can download/record music on it for her? She has a portable CD player, but she keeps taking the CD out and pushing all the buttons. She needs something with just a few buttons, she really likes to push buttons. Don't want to put too much money into it, she is rough with toys.
Friday, February 5, 2010
My baby is getting better!!! This is the first time she has been up in days. She is actually sitting up watching tv. She is not laying on the couch crying. I am so excited!! " Thank you Lord for healing my beautiful princess and letting her dance for her mommy. My heart is swelling with joy. God you are so wonderful and bless me so much. Thank-you!!"
Thursday, February 4, 2010
to the hospital that is. She seems to like to visit the hospital during the busy season, Dec-Feb. This was her first visit in 13 months. Took her to the doctor on Mon for a rash that she developed Sunday night. She was a bright red cherry. They decided it was an allergic reaction to her antibiotic. Now everyone in the family is allergic to penicillin, that makes it easy to remember! They ran more test since she was still running a 104 temp. Her white blood count was elevated, so she got a shot of antibiotic and blood cultures were taken. She slept the rest of the day. Late afternoon her temp finally broke!! Back to the doc on Tues. Really no change and WBC was still elevated, so another shot of antibiotic and every doc came in to see the rash and give their opinion. They thought maybe mono or kowaski, or still possibly a strep rash and an allergic reaction rash together. Tues night Sarah decided to do a weird breathing sound, so we loaded her up and headed to the ER. Of course on arrival, they freaked out at the rash! She never went back to sleep, so she never made the sound again. They ran tons of tests and came back with strep rash with an allergic reaction rash on top--they really never addressed the breathing, just the rash. All her bloodwork came back normal, praise the Lord! She slept most of yesterday. Today she has been up just a bit more, still not eating, but drinking well. She has more swelling and rash today. This is the first day without the steroids, so you can get what is called a rebound reaction from coming off steroids. She is a sick little girl. Keep her in your prayers. I am ready to have my dancing princess back!