Tuesday, August 30, 2011

Tuesday Tidbits - Challenging Mornings and Back to Praying

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 adjustments to her food. We also switched her over from the liquid Senna to Miralax which is working well for her.

Today she got to be the helper of the day or as her teacher calls it, "Top Banana." I mistakenly thought this meant she had to bring snacks for everyone but turns out all the kids bring their own snack, which is different than in kindergarten and first grade. The kids didn't mind having an extra snack! Also she got to bring show and tell. She brought her favorite book, "We're Going on a Bear Hunt" and with the help of her teacher even said the words to the book aloud to her classmates!

Anyway, after a couple of such rough mornings getting Faith ready for school, I was so thankful to get back to Moms in Touch and start praying for the kids in school again. I found out that these prayers are needed at Centennial as some of the rooms are nearly over-flowing with new students and there are a shortage of aides. There are also a couple of new students who have special needs. I have been praying for Faith about school but it feels good knowing there is another mom who is praying for her too about the same issues.

During these past few days that Faith has been in school I am discovering just how wonderful it is to have a vehicle at home just waiting for me to drive to Wal-mart to pick up needed supplies or food. Since we got the corroded wire fixed, the van has been running great.

Today was Faith's last physical therapy session at Medcenter for the summer. She has done great in her gait trainer this summer and we'll be getting one at home so we can continue working on that with her here. It would be great to have Faith walk down the hall with me to grab a pop! She'll be getting a new, much more modernized stander as well as she is outgrowing her old one. For some reason, she just won't stop growing - hard to believe she will be eight years old in two months!

Thursday, August 25, 2011

Let Second Grade Begin

Well, just as I thought, this morning didn't go too well getting Faith ready for school. She was in tears for most of the time we were getting ready. I tried to sit with her and console her and through her tears she said, "I'm not ready for school." When I asked her why she replied through even more tears, "I want to stay home with you."

It was sad and endearing at the same time. I'm not sure what finally brought her out of her tears but she did calm down as I was fixing her hair. Then when her dad tried to talk to her she told him she was busy getting ready.

Rob and I both got to walk her to school and since her morning aide was nowhere to be seen, I took her downstairs to her classroom. On the way, we ran into several teachers who gave Faith a very warm welcome back to school. She received many compliments on her outfit and her pretty hair. She was smiling and talking and I knew at that point she was going to be fine.

At home, I kept watching the clock and wanting to go get her to see how her day went. Neither of her aides called so I figured that was a good sign. Then finally it was about three o'clock and when I went down to the school she was sitting outside with her afternoon aide and a friend of hers who is also in a chair. When she saw me she yelled, "Mommy!" It was a very happy moment and I was  pleasantly surprised that she didn't look very tired.

She had been a little nervous in the morning after I left but her afternoon aide said she did great and was totally herself. Faith told me some of the things she did in school like doing a puzzle, going to the library and about a few of the other girls in her class. That is my favorite part of the whole day is hearing about hers. We'll see what tomorrow brings!

Wednesday, August 24, 2011

Getting Ready for School

Tomorrow is the big day - Faith officially becomes a 2nd grader. We have been spending the last couple of weeks buying school supplies, shopping for school clothes and having fun driving the van around. Then yesterday to help her get emotionally ready for school we read the list of kids in her class and had a little pretend school session at home - of course she wanted to be the teacher! She does say that when she grows up she wants to be a teacher. She definitely has the giving instructions part down.

This morning I agreed to help volunteer at one of the booths for open house so parents could come in and pay lunch money, pay PTO dues, buy spirit wear - things like that. Faith was very patient with me at the booth and it helped when people came over to visit. After we were done with that, we ventured downstairs to meet her teacher and see her classroom. I was thankful that there was an instant connection between Faith and her new teacher. Faith ended up telling her, "You're a good teacher!"

Faith at her custom-made desk in her 2nd grade classroom

We also talked to her special education teacher, a few other teachers who know her, one of her aides, some of her friends and their parents, her music teacher and even a new family who just moved here from Massachusetts.  It was a nice feeling knowing there are so many people at the school who care for Faith and who are genuinely concerned about how she's doing.

While Faith had fun this morning for the few hours we were at the school, the real test will be how she does tomorrow morning. I'm praying she does well.

Monday, August 15, 2011

Assistive Technology

Assistive technology helps students succeed in the classroom. There are many types of assistive technology to help students with different special needs. In the photo to the left, assistive technology called interactive switches allow Faith to drive her power chair and operate her computer at school. Read more by going to Assistive Technology Helps Students with Disabilities.

Friday, August 12, 2011

A Very Special Visit

Just the other day we had a very special visit from our friends Kimberly and Matt. Kimberly used to do respite care for us and worked with Faith for about 3 1/2 years. They developed a very special relationship. Kimberly is the one who helped Faith make a very special gift for us - our "I love you stinky face" ceramic mug. It was also Kimberly who made Faith think her last name was spelled R-O-C-K-S because they would practice spelling Faith Rocks!

While we were happy for Kimberly's fiance finding a job in her home state of Kansas last summer, we were very sad to see her go. After moving back to Kansas, Kimberly found her dream job in early childhood education and she and Matt got married.

Throughout the year we have kept in contact with them through SKYPE. Sometimes our SKYPE sessions are over an hour long and Faith and Kimberly found a way to play hide and seek over the computer. And then when its time to say goodbye, Faith cries and tells me how much she misses Kimberly. I tell her I understand how she feels.

Matt and Kimberly, along with the newest addition to their family - an 11-week old Cavalier King Charles Spaniel puppy named Lanie, recently traveled up here to North Dakota. While they were here visiting, Faith kept a close eye on the puppy who was busy sniffing around our whole apartment. After they left, Faith said, "oh I just love that puppy." And of course now she asks, when is Kimberly coming back over?

Matt, Kimberly and Lanie with Faith

Thursday, August 11, 2011

Some Magical Moments at the Park

All week long, Medcenter One has been holding their pediatric therapy sessions a handicapped-accessible park called Magical Moments. Of course when this was being planned, the weather was going to be a key factor. It turned out to be a beautiful week - perfect for playing in the park

Yesterday, Faith got in her gait trainer like any normal physical therapy session but this time instead of walking down a hallway, she got to walk up some ramps that eventually led to some slides. It was harder than normal because these ramps were at a slight incline and she has never walked uphill before. She worked so hard and as a reward she got to go down the green slide with her physical therapist. She was all smiles!

Faith giving it all she's got

Keep going Faith!
Faith made it to the slide!
Going down the slide!
When Rob and I lived on 7th street, we used to take Faith to this park quite a bit because of the special wheelchair swing it had. The swing is now new and improved and Faith loved it just as much if not more than she used to.

Having so much fun on the swing!
After she was finally done swinging we went home for a feeding and for me to get my bean salad out of the crock pot for our picnic back at the park. The potluck picnic was sponsored by the CP Support Group and it was a great chance to visit with other families and chat with the pediatric therapists - about something else besides therapy!

Time to socialize and eat lots of yummy food!
It was a great day at the park and I know Faith was totally tuckered out because she slept in past 9:00 this morning!

Tuesday, August 9, 2011

A Real Joy Buster

Have you ever experienced a time in your life when you were flying high full of joy one day then the next something comes along that completely bursts your bubble and you end up feeling totally deflated? This is what I call a joy buster.

I had one of these real joy buster moments this past Sunday. I wanted to take our van somewhere so I could practice getting Faith in and out of it and to make sure I could do her tie-downs correctly. We were in the Healing Rooms parking lot when I got her out, showed her they were closed (she really wanted to go that day) and then upon getting back in the van discovered it wouldn't start.

Thankfully, I had a cell phone with me and was able to call Rob to come and get us. On Monday we called VMI, the company who put in the electrical system to make it accessible. We thought something might have to be reset or there was a safety feature we didn't know about. VMI gave us something to try and I was full of hope. But it still wouldn't start. Then we had some guys from Great Plains look at it and they weren't sure what it was. They tried to jump it in case it was the battery but that didn't work. Rob then drove to our mechanic's shop and he suggested it might be the starter. Friday is the earliest we could get the van in.

It is still sitting in the Healing Rooms parking lot. Tonight we all went there for prayer. We even prayed for the van. Upon looking under the engine, a friend of ours on the Healing Rooms team noticed there was a 2003 battery in there which is odd considering the vehicle is a 2006. As I type, Rob and Bob are taking out the battery and Rob is going to take it in to be tested tomorrow.

What a complete joy buster to have finally gotten a van only to have it not working just three days later. But at least it happened in a good parking lot and at least I had a cell phone with me when it happened. It could have been much worse!

Is the devil trying to steal your joy? Keep the following scriptures in mind:

The thief comes only to steal, kill and destroy; I (Jesus) have come that they may have life, and have it to the full. John 10:10

Why are you downcast, O my soul? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Savior and my God. Psalm 42:11

Friday, August 5, 2011

Our Van - A True Blessing from God

Ever since finding out Faith was going to be needing some sort of wheelchair for mobility, my husband and I knew that one day we would need an accessible van. Until that time, though, we knew we would have to make-do without one. After Faith outgrew her regular car seat and needed more support, we were able to acquire an adaptive car seat called the Special Tomato using funds from GABR.

Faith's first wheelchair was a pediatric wheelchair called a Kid Cart - which came apart and easily fit into the trunk of our car. But after outgrowing that, her chair became much bigger and much heavier as well. Thankfully, we were able to take the seating system off of the base and then put the seating system in the passenger seat of our car with the base in the trunk. All of this required lots of lifting.

Here's how that process went:

I knew after her chair was upgraded with a new back and seat, not to mention the fact that Faith just wouldn't stop getting taller, we were getting close to really needing something else.

Faith in her adaptive car seat - her legs and feet are kind of squished

Since Faith's Kid Cart days, we had prayed for an accessible van. But this winter, we prayed harder than ever for a van to transport Faith. It was all just getting to be too much lifting. I had looked online for accessible vans but became disheartened upon finding out the cost. A brand new van with a lift could easily cost $50,000. Used ones seemed to be around the $15,000-$30,000 range, depending on the age and number of miles and most of them were located out of state. We had found a few located in North Dakota but they were much older and bigger than we wanted.

Then one day at the beginning of the summer, Faith's disability case manager e-mailed us the specs for an accessible van for sale. It sounded perfect and it was located in north Bismarck, not far from where we live!

When we first went to see it, we were a little concerned because it seemed to have some door issues. Also, the automatic ramp wasn't completely reliable but there was a manual crank which was a good option. We thought about it for quite a while and prayed too - we wondered if this was the van God had for us.

The second time we went to see it, we got Faith inside of it and took it for a test drive. We were impressed and we learned there was a little trick to the door so that it worked better. We really felt this was it, this was our van! The owner even went down on the price for us. It had been his dad's van who was in a power chair. His dad passed away so they no longer needed it.

After going through NDAD to acquire a low-interest loan and getting all of the paper work taken care of, we finally purchased our van! And thanks to GABR, we will be able to pay off part of that loan in the immediate future. We truly believe this is a blessing to us from God - and provided to us in His perfect timing.

Faith loves the van - she says it is soooo big!

Tuesday, August 2, 2011

Tuesday Tidbits - Daily Walks and and A Major Fit

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 zebras that were visiting from Minot. While going down Washington Street though, it was blocked off and there was a lot of water covering a section of the street. We had to re-route and we made it to the zoo only to find out that parts of it were flooded because of the rains we received the night before.

Some of the walking paths had about 6-8 inches of rain covering them. The zoo worker said our best bet would be to take the train - which we were going to do anyway. (Good thing we have free train tickets due to being a zoo member).

On our train ride, we got to see most of the animals including the zebras, which confused some people because they were located in the reindeer exhibit! We also got to see just how much water the zoo had. The ground is so saturated with water because of the flooded river that the rain had no where to go. It was a little scary when the train went through lots of water.  Faith was a little disappointed that we couldn't make it over to the tigers or otters but I'm sure we'll get there again.

This was the best picture I could take of the zebras while passing by on the train

Going through water while on the train
Yesterday, Faith and I had planned on walking to another friend's house for a visit but it began to rain so we had to reschedule. It turned out to be a very hot, sticky day but Faith still wanted to get out and go to the Healing Rooms - where we go for prayer. After a wonderful prayer time, Faith decided she did not want to leave and threw a fit.

It was so icky outside that all I could think about was getting back to our air-conditioned apartment. This was difficult since Faith was unwilling to get into her car seat. I had her partway in there when her tone kicked in. Her feet were on her footrest and she actually got herself into a standing position. It took a lot of deep breaths on my part to get her somewhat into her seat so that I could at least get the safety belts around her.

She cried all the way home then didn't want to come inside. I knew I was going to have a difficult time getting her out of her car seat and into her chair with her crying - she just isn't bendable when she's having a fit because her tone kicks in and her tone is stronger than me. She said she wanted to wait for daddy to come home but that was going to be another couple of hours. Finally, she managed to calm down enough for me to get her inside.

Needless to say she got a time out and I vowed never to take her to the Healing Rooms again until we get our van! Then I won't have to transfer her in and out of her seat. We are hoping to get it soon - I know I keep saying that but we are just waiting on the bank to disperse the funds to us. But don't worry - as soon as we get it I will be sure to write all about it with pictures included!