Faith's Mom's Blog

I really can't believe it is nearing the middle of September already. Time flies though when there is so much going on! It seems that once school starts our schedules go on overdrive! I am very thankful to report that Faith is really enjoying third grade! She is back to driving her power chair at school and it is nice that her classroom is on the main floor so the only class she takes the elevator for is music. She really loves her teacher and this year she has one new instructional aide and also one new special education teacher. The special education teacher she has had since kindergarten had a baby in the spring so she is only working part-time. Faith in her third-grade classroom Unfortunately I was not able to attend her IEP meeting but Rob was able to go and it went pretty well. It is great to know that her principal, teachers, aides and therapists are all working together to help her accomplish her goals for the year. They are going to focus more on learning through a

Lately I've been inundated with paperwork so that Faith can continue to receive SSI and Medicaid. Just recently I had to fill out forms to prove to the good  people at Social Security that Faith still has a disability and is still eligible to receive funds. It was a lot of paperwork considering I had to verify all of her doctor's appointments within the last 12 months and also to prove she had been seeing a physical therapist, occupational therapist and speech therapist. Faith went to the SSI office with me on Monday since she didn't have school. The little waiting room was packed but we thankfully didn't have to wait long. When we left Faith yelled out, "Bye guys!" She was pretty happy to get out of there. Most people who know Faith knows she has a slight obsession with cupcakes. She always wants cupcakes for her birthday and for Christmas we make and give out Happy Birthday Jesus Cupcakes . She has had a pair of pink cupcake pajamas and now has green one

Oh boy! These last two mornings have been tough ones as far as Faith getting ready for school. Everyone seems sort of perplexed by her behavior. She cries and screams and throws a fit as soon as I start getting her dressed for school. She tells me repeatedly to "Stop it!" I seriously wonder what the neighbors think during all of this. At some point she does calm down but why does she even do it in the first place? Does she seriously think that by throwing a fit we're not going to send her to school? Both her morning and afternoon aides say that when she is in the classroom she is a little tense and her arms are bent up stiff like she can't totally relax. I'm hoping this will get better as she gets more used to her new classroom. Despite her bits of anxiety, her feedings are going well at school for which I am very grateful. Last year we kept having episodes of gagging and throwing up and we ended up seeing a nutritionist to see if we needed to make any adjustmen

I've been trying to take Faith out for walks - to get fresh air for her and exercise for me. We have our little routine that after her first feeding in the morning we go out and about - usually just around the neighborhood. It's a nice time because its not quite so hot - even though some mornings have been humid. Last week we walked to a friend's house and while sitting on her steps visiting, we noticed the sky starting to get dark then felt sprinkles. It's a good thing she only has one step - that made it easy to get Faith quickly inside. After we got inside, it began to downpour. We ended up extending our visit longer than we had planned because it wouldn't stop raining! Rob ended up having to come get us on his lunch break. Faith really liked our long visit because she got to spend time with Molly, one of her favorite dogs  On Saturday, I was excited to finally take Faith to the zoo for the first time since it had re-opened. We really wanted to see the z

For the past month or so, Rob and I have been trying to go through every closet, every drawer, every box, basically every thing in our apartment. This Friday all of our un-needed treasure will be up for grabs at a rummage sale we're going in on with a friend of ours. This morning, Rob realized he had forgotten to go through his clothes so he hurried into the closet and grabbed all of the hangers with dust on them. A lot of his clothes he has shrunk out of since losing weight. Wish I had that same problem! Another reason for our reorganizing frenzy is because we had to make room for Faith's new bed. While shopping for a better mattress for her, we were at TW Warehouse when we discovered the Dr. Breus Bed . Dr. Breus developed six different mattresses for different kinds of sleepers. The mattress we found for Faith is made especially for people with fibromyalgia or arthritis. Though she doesn't have either of these conditions, we figured it was worth a shot to see if it w

Finally last week, Faith got her hair cut! Her thick hair was getting too long and unmanageable so I had Julie cut it pretty short - perfect timing for the warmer summer months. It is really cute and she has gotten lots of compliments. We are also finally looking at purchasing an accessible van. Our disability case manager e-mailed us some specs of a van that is here in Bismarck. On Sunday we went to look at it and we think it would work well for us. It does have some door issues but we think we'll be able to work around them. It also has an in-floor ramp that can come out and go back in either automatically or manually. We rolled Faith into the van and she was pretty excited about it! Yesterday Faith had her class field trip to the zoo. Even though it rained for about 20 minutes, we still had lots of fun and were thankful the weather was good for the most part. Since I drove Faith out there, we were able to stay a little longer while her classmates headed back to school. I

It's been a while since I've done "Tuesday Tidbits" so today with our wonderful winter weather, I thought it would be the perfect time to put together a brief update. (I'm not including a photo of our weather because it is just too dang depressing.) I mentioned in a previous post that Faith had gone to the dentist. Well in his words "she has a lot going on in there."  Her two top teeth are trying to come in along with her upper molars. She also has four other teeth that are slightly loose. No wonder she's been a bit cranky lately. According to Dr. Bryce, she will experience fevers along with a stuffed up nose and extra mucous and drooling. He said to give her ibuprofen to help keep the swelling down and ease the discomfort. I find this especially interesting because when I ask the same questions about the effects of Faith's teeth to her pediatrician, he always says her teeth have nothing to do with these symptoms. I have yet to hear of a pe

It seems Faith was just getting over her last three-week cold when she started coming down with another one. "Oh no, not again," was all I could think. Yesterday I sent her to school even though I knew she was tired because she hadn't slept well all weekend. One of her aides said it had been hard for her to stay on task and stay focused. Last night she was up at 3 a.m. so I knew she wasn't going to do well in school and kept her home. She has been sneezing and sounds a little stuffy but I PRAY she has a good sleep tonight and she can kick this cold much faster than her last one. Last week I took her in to see her pediatrician just to touch base with him since he was available. And of course she was perfectly fine then! He said she may have had RSV which can last three-four weeks. Hopefully that is not the case again this time. I told him I was concerned about her throat because she seems to get a sore throat a lot and was wondering if something was going on with her

Burrr, it's cold out there! Twenty below with the wind chill - so glad I didn't have to walk Faith down the hill this morning and she was able to enjoy some warmth on the bus! Which, by the way is working out great for us. I guess when she's on there, she just giggles and laughs the whole time. The other day the bus driver told me he wished he had her for another 4 or 5 more blocks just to hear her giggle! Besides the bus being a big hit, we have some more exciting news. Faith is going to be one of the stars this year for the Great American Bike Race (GABR)! This means she and her friend, Tanner, will be helping to promote the big event which takes place on April 9, 2011. Faith will be on TV, the radio and will be featured in Medcenter One's magazine all to promote GABR. So once again I will be looking for riders for Faith's team. I may try to get two teams together so that's 20 riders. Let me know if you want to ride! We will also be doing lots of fundraisin

Christmas is over. The joyous holiday ends once again, just as it does every year. And now we will all try to catch up a little before celebrating the start of a New Year. The holidays continue the day after Christmas in Canada with Boxing Day. So on Boxing Day we tried to communicate via Internet with Rob's parents and sister. Unfortunately, Skype no longer works for us, which we aren't sure why, so we resorted to using Yahoo Messenger. It wasn't as good as Skype but it did the trick. We got to see Grandmother and Grandfather, Auntie Johanna and even Joh's new cat, Ruby. When we asked Faith if she liked Ruby, she answered very honestly, "No I don't like that cat." We think she is partial to Joh's other cat, Lucy, whom Faith has actually met in person. Talking to Auntie Joh Also on Sunday, Rob had fun putting Faith's Toy Story 3 Train set together. Yes, I did say Rob had fun. Faith had only mild interest. She would rather play her new card g

The cold weather this past weekend pretty much kept us indoors. I would have loved to take Faith out to do some shopping but with her being all bundled up and her current growth spurt, it makes it harder to transfer her out of her chair into her seating system in our car. Oh how I am praying for a van by next winter! On Saturday Faith and I watched the exciting but heartbreaking NDSU football game as they played Eastern Washington in the quarterfinals for their NCAA division. It was a great game and Faith had fun laughing at me as I yelled, cheered, jumped and danced. Every time I got excited she yelled, "Did you win yet mommy?" Unfortunately no, I didn't win as the Bison lost in overtime. Oh well! They had a great season, one in which they weren't expected to get so far. NDSU during one of the many highlights of the game We did manage to get the rest of our Christmas decorating done, which includes our little Christmas tree that has survived the last five y

We've been waking up to some beautiful scenery with the frosted trees Because of the snow storms last week, we had a few rough days of getting Faith to school and back. Thankfully, my friend Tina was able to help out with her van and also one of our neighbors, who also has kids at Centennial, was able to push Faith up the hill one day. Rob and I both think that maybe it's time to get Faith on the bus. I thought it would be easy enough, since the bus goes right by here every day and that all I would have to do is make a phone call and it would happen just like that. Not so fast, I learned! On Friday, I had a meeting with Faith's special education teacher and she explained that to get Faith on the bus, her IEP team would have to meet and decide that because Faith doesn't have the necessary transportation to get to school, she will have to be picked up by the bus. Even after all parties agree that Faith needs to take the bus, it is not guaranteed that the bus will co

I must say, after the long weekend, I am feeling a bit guilty. We didn't have too much going on so we mainly stayed indoors and I let Faith watch way too many videos. When Sunday finally rolled around, she was bored and a bit cranky. Before having kids, I always told myself I would not be one of those moms who lets the TV babysit their kids. Things sure turn out differently when you actually have kids! When Faith comes home from school, that is all she feels like doing. She is so tired from her long day, which not only includes classroom time but also working hard with her special education teacher, driving her power chair and any other therapies she might have for the day. By the time she gets home, she is spent. I don' feel as guilty letting her watch so many videos after school but over the Thanksgiving long weekend, I am going to try hard to limit her video-watching time and find other things for us to do. Last Friday I took her to the doctor because her nose had been s

Phew! What a weekend! I'll try to give a recap of everything that has happened over the last three days. Saturday we went to one of Faith's favorite places - Papa's Pumpkin Patch. It was the perfect way to celebrate her birthday and the fantastic Fall season we have had. It was about 50 degrees but still nice because there was no wind! Faith had a blast, especially with her friends, Chloe, Alivia and Barborka. She was very blessed with lots of wonderful gifts, especially lots of new pajamas which she really needed. Faith and her friends blowing out her birthday candles On Sunday Faith went to a friend's house for a Halloween Party. There were a total of about 25 kids all dressed up in very cute costumes such as Jesse and Buzz Lightyear from Toy Story, a few princesses, a butterfly, a pumpkin, a cowgirl, a monkey, Dorothy from Wizard of Oz and Faith went as Supergirl. The highlight of the party was a blow-up haunted house that the girls would run through scream

This month has been crazy with appointments, meetings and unfortunately for me a bit of sickness as well. Here are some tidbits from the last week or so. Last week I went to the doctor and was diagnosed as having walking pneumonia. She prescribed some heavy-duty antibiotics so along with taking those, I took any opportunity I could to sleep and rest. Now that I have my energy back, I need to make up for lost time especially when it comes to cleaning and organizing! We had our first parent/teacher conference with Faith's teacher. Hard to believe she has been in school for nine weeks already! We met with her teacher along with her special education teacher, her speech therapist and occupational therapist. They all said she is such a joy! She is doing really well with knowing her letter sounds and learning some sight words. She's also doing great in her power chair at school. The only issue they have had is that she doesn't seem fully supported in her chair and they find h