Faith's Mom's Blog

It has been quite the weekend. It all started Friday when Faith had her last day of summer school. She had really struggled getting to school the last two weeks because of her cold that just wouldn't go away. She also wasn't sleeping well which made things even worse. She missed three days of school last week but she made it on the last day! And the best part was that she drove her power chair home from school! Her dad was especially impressed at how great she drives. Normally, she has her seating system on a manual base and she switches over to her power base when she's in school. We are hoping to get her in her power chair more and more which will be easier for us when we get our van - for which our loan has been approved! If everything goes smoothly this week we will be getting our van by the coming weekend! On Saturday we told Faith we were going on an adventure and drove two hours to a lake resort called Indian Hills where my whole family was camping. The point of

Okay, so I've officially given up on trying to get some sleep. Actually, I did manage to get about 20 minutes of shut-eye while Faith was being mesmerized by Caillou. Faith and I have been up since 5:00 this morning. To make matters worse she didn't fall asleep until 11:00 last night. She has a cold and when she has a cold she just doesn't get much sleep. Unless, I found out today, she is at school. I took her to school this morning because she was laughing her head off at Bert and Ernie on one of her DVDs and she seemed pretty chipper, despite her plugged up nose. So then about an hour after bringing her to school, I get a phone call from her aide saying her teacher suggested that Faith come home because she was dozing off in her chair. Faith? Falling asleep in her chair? What? It was hard to believe. When I got her home, I tried twice to get her to take a nap but to no avail and now, at 3:00 p.m. she is still wide awake, just as happy as can be. Sometimes my daughter

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

Every day this week been a great day. Each day has either brought new adventures, fun with friends, good news and even a little reunion of sorts. And on top of all that, Faith has been sleeping well, which is always a huge blessing to our family. Since last Monday, Faith has been attending a summer school program called Camp Edventure at her school. She goes from 8 a.m. to noon, Monday through Friday. The program is six weeks long so she'll get a nice break in August before starting first grade. Her mornings have been busy and this week our afternoons have been busy yet fun-filled as well. Monday - Faith and I took the long, scenic route, mostly uphill, walking to her friends' house for a playdate. We spent the whole afternoon at their house playing outside in a tub of water filled with toys and her friends showing her worms they had dug up. It was such a beautiful day to be outside and I was so thankful to our friends for sharing their backyard with us! After nearly four h

I've been wanting to get this post up since Friday night when Faith reached an exciting milestone. Unfortunately, however, Faith ended up getting sick. Besides being busy taking care of her, I have also been sleep deprived as neither of us has slept well all weekend. This morning I kept Faith home from school and we are both exhausted. I decided to try and post this anyway. So if it doesn't make sense, you'll know why! Friday was a busy day for us. I went with Faith to school so that we could meet her new instructional aide who will be working with her during summer school. We showed her Faith's feeding pump and how she would be connecting and disconnecting Faith's feeding tube to her Mic-Key button. We also showed her how to lift Faith and get her in and out of her chair properly. After being at the school for a couple of hours, I went home for lunch then went back to get her so that she could go bowling with all of the other kindergartners. Faith's teammat

I don't usually use the old cliche, Thank God Its Friday or TGIF but today I really am thanking the Lord it is Friday. This week has been a bit of a rough one for the whole Bousfield family. Monday - Faith had the day off from school for an unused snow day or something and thank goodness she did because she woke up at 6:30 a.m. throwing up. After getting her changed, me changed and her bed cleaned up, she did a repeat about 30 minutes later. She continued to do so until mid-afternoon until there was absolutely nothing left in her poor little tummy. Later that afternoon, she seemed to be feeling better so a gave her a mixture of pediasure/water and she kept it down. Tuesday - Faith and I woke up to find Rob at home on the couch. Now he was throwing up and had called in sick. I kept Faith home from school to make sure her feedings were going to continue going okay. Although tired, she did make it to occupational and speech therapy in the afternoon but ended up having a diarrhea

My friend and I are currently taking part in a small group Bible study about the fruit of the Spirit. In this week's lesson it talks about being a friend who is refreshing. Yesterday, I was blessed to have a friend who gave me a chance to be refreshed. Once again, Faith has gotten into a cycle of not sleeping well and is up several times throughout the night. Yesterday morning it had just gotten to be too many nights in a row of poor sleep and we were both exhausted. I allowed her to stay home from school to get some rest which meant I couldn't take the nap I was hoping to have when she was at school. I prayed that God would give me the energy to make it through the day. But He gave me something better - a chance to have a three-hour nap! Around mid-afternoon, I called our respite care provider/friend, Michelle to see if she was available in the evening. Instead, she asked if I would rather have her take Faith in the afternoon. (It happened to work out with her job that she

Last week and now again this week we are experiencing some near-sleepless nights. Last week, Faith was only sleeping for about an hour at a time before waking up, tossing and turning on the verge of crying. Each time this happened I would get up with her and hold her until she went back to sleep. Then an hour later we would repeat the process. This was nothing new for her. It had gone on before and each time it happened I wondered what could be going on. Rob and I figured she was going through a growth spurt and having pains in her legs like I used to have. I decided this time though, that I would take her in to see her pediatrician. I'm so glad I did. He attributed her restlessness to muscle spasms which is common for those with high muscle tone (tight muscles). It made sense too because of the way she was acting. It's as if she just couldn't get comfortable. When you or I sleep we can actually relax our muscles, but Faith can't because her brain is not capable of se

As a mom, I have to make many decisions on a day to day basis. What to make for dinner, how to spend my free time, what to buy at the grocery store, what we need from Wal-Mart, etc. The list goes on and on. But one of the hardest decisions I have to make is whether or not to send Faith to school when she's not feeling 100%. Of course I'm not going to send her if she has a fever or if she's throwing up. But what if she just has a cold? Do I let her stay home and rest or do I send her to school anyway? On Wednesday of this week I opted to keep her home. She hadn't slept well the night before and she was really mucousy and very tired. But I noticed throughout the morning she seemed to feel better and she was her usual happy self. Could she have gone to school I wondered? That night she didn't even act like she had a cold the way she was laughing and carrying on with her dad. I decided if she slept well that night I would send her to school in the morning. Thursday

We had a small miracle occur in our household last night. Faith slept in her own bed until 6:30 in the morning. She woke up and I got her back to bed and she slept another couple of hours before I had to wake her for school. This morning I felt so well-rested that I didn't feel the need to sleep while Faith attended school. Last week, that's exactly what I did. After seeing another doctor, actually a cardiologist, I found out my O2 saturation was down to 87% and I had pneumonitis . I was having major shortness of breath so I was concerned there was something going on with my heart. He told me to finish my antibiotics and get lots of rest. He also said it wouldn't be a good idea to walk Faith to school and back home. Thankfully, we were able to get someone from respite care to bring her to school and back. And while she was in school, I slept. On Friday Faith stayed home from school because she was coming down with a cold but we had respite care from 1-5 p.m. - I slept mos

You know how kids come up with all sorts of excuses to not go to bed. They need a drink of water, they need to go to the bathroom, they need to make sure there's nothing under their bed or in their closet. My daughter is no different. I share a room with Faith. We are finally getting her to sleep in her own bed at night. It is an ongoing process. I am proud of her that she can fall asleep all on her own. She used to need to be cuddled, rocked and sang to. Now I put her in her bed and she falls asleep, after about 30 minutes, that is. No matter how tired she seems, it always seems to take a while before she finally drifts off to sleep. My husband and I agree that she has brains like us - it's hard to deactivate them. Last night, it seemed especially hard for her to fall asleep. Here is how are night went: 10:00 p.m. - I put Faith in her bed while she yells, "I want to stay awake, I don't want to go to bed." 10:05 p.m. - "Mommy could you help me out.&qu