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 everyday she comes homes 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 her 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

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 lunch room. 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 school teacher, Mrs.

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 MedCenter 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 we would not have Faith see her anymore. Well, that day is coming. We decided to for-go physical therapy at MedCenter, until January anyway. We hope that by cutting PT from her schedule at

The Importance of an Individual Education Plan for Your Special Needs Child

Look at those long legs! Every where 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! 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. Just out of curiosity I looked in my baby b

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 bette

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. 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 time I tried to explain to her that Dr. Eggert was goi

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. Also, uncle Robert who is taking the photo! Faith really likes to visit with Dave and his wife Lisa but she might like their dog Ginger even more! 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 with some friends Faith loves seeing her Grandma and Grandpa!

Yesterday, Faith cut her little toe. Rob was in the back room with Faith and I was in the adjoining bathroom taking a shower. Rob had put Faith on the floor beside the door so she could talk to me while I was in the shower. Faith was yelling, "Mommy can you hear me?" I yelled back, "YES!" Then when I got out, I put on my robe and opened the door. Faith got so excited and starting giggling. "Did you have a nice shower?" She asked. She was acting like her normal cheery self so I was surprised to look over and see bright red blood on the floor. Immediately, I bent down towards her to find out where she hurt herself. I saw blood on her toes on her left foot. I called Rob over and we tried to wipe the blood away so we could figure out where she cut herself. It wasn't until Rob and I started fussing over her that she realized she had hurt herself. While Rob picked her up and held her, I went to get bandages and other first-aid supplies. The blood