Faith's Mom's Blog

Faith in her favorite pajamas I can definitely tell that Faith is back in school. Last night we were putting a puzzle together and she began telling me a story. I glanced away for just a second and she said, "Mommy, are you being an active listener?" She seems to be taking in a lot at school and every day she comes home with lots of stories including learning to play "Simon Says" and the new friends she is making. She really seems to like her teacher. She has had trouble with some of her feedings at school for which we are making adjustments. The only really tough part about her and school is getting her there. Every morning, we have a major battle getting her out of her pajamas and getting dressed. She loves to wear her jammies! And she must like me to wear mine as well because as soon as she notices I've changed from my pajamas to my clothes, the battle begins. She knows it's soon time for her to get out of her pajamas and into her clothes. She crie...

Faith and I started the school week on Monday by attending a meeting with her special education teacher, both of her instructional aides, her teacher and a nurse. The objective of the meeting was to set up a feeding plan for Faith.  Since she will be in school full days, she will need to receive two feedings at school plus I want her to take part in snack time and be with the other kids in the lunchroom. Considering Faith's hefty schedule, it took a lot of thinking to include all of this in her day. We came up with a plan and if needed, we'll make adjustments as time goes on. I love that everyone who works with Faith puts her needs first above all else. Wednesday, Faith and I went down to the school for their open house. Faith brought all of her supplies to school and got to see her teacher and her classroom for the second time. She was excited to see her custom-made desk again. We even went to visit her Kindergarten teacher, Mrs. Steckler and her summer schoolteacher, Mrs. D...

It's that time of year again - time to make major decisions regarding Faith's school year. Last year we had to make the huge decision of Faith attending Kindergarten for half days or full days. We decided half days would be enough for her, considering she still had therapy sessions at the clinic in the afternoons. Looking back, I think we definitely made the right decision. This year, we are looking at Faith attending school full days. With that decision made, it opens the door for many other decisions to be ironed out. Some of those have been very difficult decisions and as we make them, I find myself wondering if we're doing the right thing. For instance, Faith has been seeing her physical therapist at least once a week since she was six months old. I have always dreaded the day that Faith would no longer see that physical therapist. Well, that day is coming. We decided to for-go physical therapy, until January anyway. We hope that by cutting PT from her schedule at t...

Everywhere we go, people who know Faith comment, "I can't believe how much she's grown this summer." We can't believe it either! We just weighed her the other day, and she weighs 48 pounds. 48 pounds!!   That's so unbelievable to me as her weight has been an issue for so long but finally, she is starting to fill out more and she even has a roll in her tummy! I also tried to measure her while she was lying down and as far as I could tell, she's about 47 inches tall - almost four feet! It won't be long before she doesn't fit in this swing anymore! Rob and I have had to make adjustments in the way that we carry her and bring her from room to room. We have to remember her legs are longer, so we have to sort of turn sideways when we carry her into the bathroom or into her room. Every once in a while, we forget how long she is and bump her feet on the wall or the doorway. This summer we have had to adjust her chair and need to adjust her stander as well....

Faith loves Sesame Street and has gone to Sesame Street Live for the past two years. Both times she was a little tense during the whole show and startled during the loud, sudden noises. Even through the tension and startling, she still seemed to have fun. But because of her startling, I wasn't sure if I was going to take her again. But then when I asked her if she wanted to go, she became very excited, so I purchased the tickets. All day Sunday she was ready to go to "the big building," (her name for the Civic Center), for Sesame Street Live. The show wasn't until 4:30 so she had kind of a long wait. Finally, the moment arrived, and we drove down to 5th Street for the big event. When we got into the auditorium, Faith got very nervous and became very tense. Our seats were on the floor about seven rows from the stage. An events coordinator tried to get us closer to the stage so Faith could see better and while I appreciated his consideration, I said it would be bet...