In the afternoon, we played with the cousins, and Conner had a bday part with one of his best friends. It was a great family day!
Saturday, June 6, 2015
Dance Recital and gymnastics
Alexis had her second dance recital today. Both grandmas and Aunt Cori, Uncle Dave, and her cousins came to watch. She was most excited for the people to come see her and least excited for the make up she had to put on. We arrived in time to take a couple pics and then have her go on stage. She did two numbers. One ballet and one tap. We were a little nervous as not only had she missed a lot of rehearsals this year due to sickness, but she had missed the last couple weeks as well. So, we weren't certain how much the learned/retained of the dance moves. However, she did awesome. She remembered the moves and did a great job. Although we didn't leave with the belly aches like last year, we left very proud of our hard worker.
In the afternoon, we played with the cousins, and Conner had a bday part with one of his best friends. It was a great family day!
In the afternoon, we played with the cousins, and Conner had a bday part with one of his best friends. It was a great family day!
Thursday, June 4, 2015
Leg Braces
Alexis got her braces. She is supposed to wear them an hour a day to stretch out the muscle on the back of her leg. That should help balance the shortening that has occurred as a result of her compensating from the neuropathy and hip pain from the hardware rubbing. So, she wears these braces for an hour a day. She doesn't mind them too much, so that's the good news.
We also heard from Alexis's doctor. She fell and broke her elbow and had to have surgery. Her recuperation time is about two months. So, we have changed Alexis's hip surgery to remove ER plates until Aug. She will start school and then a week later have her surgery. Not the best start to first grade, but they need to come out! We will deal with the brace and surgery move in order to get her to where she needs to go!
Tuesday, June 2, 2015
Added Stress
Although none of us would change it, it is a little stressful to have a child that needs additional help. After fighting for summer services for Alexis, she was supposed to receive 30 min OT, 30 min PT, 30 min speech, and 30 min hearing itinerant services this summer. As of Friday last week, I had only heard from her hearing itinerant. So, on Monday when summer school started, I put in a call.
The first person I talked to was the wrong person, so she politely transferred me to a different person and building. However, she didn't tell me who, what their role was or anything else. I spoke with her person who informed me that Alexis was supposed to be in the classroom and not just receiving itinerary services (this is 9:00 when school started at 8:30). I explained that I thought we were only getting itinerant services and not actual summer school, and she said she would look into it and get back to me. The entire day went by without a word, but of course, since I was transferred with no knowledge of where or to whom I spoke, I couldn't call back to check.
In the meantime, the OT did call to set up a time on Tuesday for us to meet with her and the PT. She briefly mentioned the PT would see Alexis once.
So, this morning, we headed out to the school that we got a letter (our only communication prior to today from special school district) stating this is where Alexis would receive her services. We waited for a good 10 minutes past our meeting time when I finally asked someone walking around the school. She tracked down someone else who made a couple calls and figured out that we were actually supposed to be at another elementary school about 20 min. away.
So, I loaded all three kids up in the car and drove to the next elementary school. Here, we met the OT who explained that we had missed our PT appt. She also explained that they had not been able to fill all the PT positions, so Alexis wouldn't really be getting PT this summer...just the one opportunity that she had now missed. Doesn't matter that she has a script for twice a week physical therapy. They will make up the services she was supposed to get in the fall, which doesn't help her at all.
The OT also had spoke with the speech therapist, and set up for Alexis to see her. So, we finally have figured out the schedule (on the second day of school, after being told to go to the wrong building), and she confirmed that Alexis was only to get itinerant services like I thought.
When I thought I was done with the drama of the day, I was waiting at 10:14 (yes, all of the above occurred before 10am), and a lady came out and asked if I was the one parked in the parking spots at the school. I said yes, and she said, "you will have to move your car." I said, "oh, my daughter is coming out at 10:15, in one minute." She informed me that I would still need to take the two little ones with me to the car, move it out of their parking lot, unload the boys again, and be late to pick up Alexis and then haul all three of them (with Alexis's weak legs that they aren't provided services for) back out to the car not in the parking lot at the school. I managed to hold in the tears of frustration until after we walked out the door.
We still managed to have a couple different play dates with friends. Overall, we made the best of the day, but when it is already stressful to have a kid that needs extra services, they sure don't make it any easier!
The first person I talked to was the wrong person, so she politely transferred me to a different person and building. However, she didn't tell me who, what their role was or anything else. I spoke with her person who informed me that Alexis was supposed to be in the classroom and not just receiving itinerary services (this is 9:00 when school started at 8:30). I explained that I thought we were only getting itinerant services and not actual summer school, and she said she would look into it and get back to me. The entire day went by without a word, but of course, since I was transferred with no knowledge of where or to whom I spoke, I couldn't call back to check.
In the meantime, the OT did call to set up a time on Tuesday for us to meet with her and the PT. She briefly mentioned the PT would see Alexis once.
So, this morning, we headed out to the school that we got a letter (our only communication prior to today from special school district) stating this is where Alexis would receive her services. We waited for a good 10 minutes past our meeting time when I finally asked someone walking around the school. She tracked down someone else who made a couple calls and figured out that we were actually supposed to be at another elementary school about 20 min. away.
So, I loaded all three kids up in the car and drove to the next elementary school. Here, we met the OT who explained that we had missed our PT appt. She also explained that they had not been able to fill all the PT positions, so Alexis wouldn't really be getting PT this summer...just the one opportunity that she had now missed. Doesn't matter that she has a script for twice a week physical therapy. They will make up the services she was supposed to get in the fall, which doesn't help her at all.
The OT also had spoke with the speech therapist, and set up for Alexis to see her. So, we finally have figured out the schedule (on the second day of school, after being told to go to the wrong building), and she confirmed that Alexis was only to get itinerant services like I thought.
When I thought I was done with the drama of the day, I was waiting at 10:14 (yes, all of the above occurred before 10am), and a lady came out and asked if I was the one parked in the parking spots at the school. I said yes, and she said, "you will have to move your car." I said, "oh, my daughter is coming out at 10:15, in one minute." She informed me that I would still need to take the two little ones with me to the car, move it out of their parking lot, unload the boys again, and be late to pick up Alexis and then haul all three of them (with Alexis's weak legs that they aren't provided services for) back out to the car not in the parking lot at the school. I managed to hold in the tears of frustration until after we walked out the door.
We still managed to have a couple different play dates with friends. Overall, we made the best of the day, but when it is already stressful to have a kid that needs extra services, they sure don't make it any easier!
Monday, June 1, 2015
NiCU friend
Our nicu friends bought a lot of Lexi Lollipop tshirts. So, the one that was in charge came over to pick them up and play a little bit. Alexis really enjoyed her baby. She was really interested in her. So was Gavin who tried to pile every toy we have on top of her. Too bad they won't have a baby all the time! It was fun to see them taking care of others, though.
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