Faith's Mom's Blog

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

Today was the dreaded day. Faith's Botox appointment was at 12:30 and now, thank goodness it is over. She is happily at home watching one of her favorite Elmo DVDs. While we were getting ready to go, she asked who we were going to go see. Usually, I volunteer this information, but I wasn't sure what to say to her. I told her we were going to see Danielle (who helps Dr. Eggert, the one who injects the Botox ).  Faith loves Danielle and I think the feeling is mutual. She asked what we were going to do with Danielle, and I told her we were going to talk to her. Then Faith asked, "Mommy, are you going to be there with me the whole time?" She knew something was up. Faith with Danielle earlier in the year at GABR.  Danielle met us out in the waiting room, and we went back to her office. She applied some topical ointment to Faith's skin that would help lessen the pain of the needles. Faith was totally fine with that. We had to wait about fifteen minutes and during that

The nice summer weather makes it easy to take Faith out and about and being the little social butterfly that she is, she loves to go visit people. The month of July proved to be quite the month for socializing, as you can see by the photos below. We enjoyed seeing Faith's aunties Tesa and Dawn and also Faith's cousins, Donnie and Preston.  Faith enjoys visiting with Kimberly and her sister, Melanie Faith says good-bye to Kimberly and Matt before they move to Kansas Faith enjoys her first campfire  Hanging out at the park with friends  Faith loves seeing her Grandma and Grandpa!

Faith loves to bake. And as she informed her respite care provider the other day, "I'm really good at mixing!" She likes to watch all of the ingredients go into the bowl, and then I help her stir it all together. She watches intently as I put the baked goods - usually muffins or cookies - into the oven. I turn on the timer and she knows our creation is ready when the bell goes, "DING!" I'm not sure if it's a good thing or not that I don't really bake all that much. Probably better for weight control but those baked goods sure are yummy with a cup of coffee. Faith still gets her baking time in though as all of her respite care providers have baked with her at one time or another. One of her providers even bought her the cutest little apron. Yesterday, while Kimberly was watching Faith, she informed Kimberly that she wanted to make something in the kitchen. So, she and Kimberly searched in the pantry for something they could make. Aha! A little b