Wednesday, September 30, 2009

Faith's Amazing Patience

I was very proud of Faith yesterday. She was so patient as she was fitted for her new SMO's. SMO stands for Supra-Malleolar Orthosis and are actually a type of AFO (Ankle-Foot Orthosis). These types of orthotics are designed to help the child maintain a vertical heel and support the arches of the foot. They are necessary for her foot because with her hypertonia her feet get pulled at a different angle than what is normal for the foot. It's sort of like trying to re-train the muscles to go in the right direction.

It took about an hour and a half for her to get fitted. The hardest part was keeping Faith relaxed so that her physical therapist (PT) could get the best fit for her foot. When Faith gets excited, her legs shoot up and out and her tone is so strong that it's hard to keep everything in place. Which is exactly what happened every time someone came into the room to say hi to her.

Her PT started off by finding a plastic piece as close to the shape of Faith's foot as possible. Then, using some white, cold stuff she would fill in the plastic piece to fit her foot. Each time her PT had to add to the cast, she had to put Faith's foot in the cold white stuff to see what kind of progress she was making. She did this about a dozen times for each of Faith's feet before she finally got them perfected. Faith does not like cold things on her skin so I knew this was a challenge for Faith everytime she had to put her foot into that cold stuff.

The casting took about an hour. After this was done, someone else came in and used a special material to "tape" up Faith's feet all the way to her mid-calf. He squeezed it and held it for about five minutes and after it stiffened, he cut it away and it became a mold of what her SMO will look like. The SMO is then made with hard plastic and padding is put in over the casting part.

During the process, Faith was able to pick out what color of velcro straps she wanted and what picture to place on the backs of her orthotics. She chose purple straps with flowers on the back. I remember the second pair of SMO's she had, her dad was in charge and he chose to have a hockey player on the back. Her third pair had a horse and the straps were hot pink. This new pair will be her fourth.

Faith's patience reminds me of what a good girl she is. No matter what difficulties and struggles she is having, she never fails to have a smile on her face. I am so very proud of her.

Monday, September 28, 2009

A Day in the Country

A dream come true for me as Faith and I enjoying riding a palomino mare named Blondie

Saturday was an absolutely amazing day. Our friend Michelle had told us about a miniature horse ranch that was having a fundraiser for the abused and neglected minis they take in. After having a wonderful time at China Star restaurant where we are friends with a lot of the staff,
Michelle, Faith and I headed out into the country.

The weather was perfect - around 85 degrees with just enough of a breeze to make being outside a little more tolerable. As we drove down the gravel road into the driveway of the ranch we came upon a covered wagon and a team of horses pulling it along. We had to pull over to make way. There were people in the wagon waving to us passers by. It was quite a sight - not one that you see everyday!

As we made our way into where all of the festivities were taking place, I noticed a corral over in the northwest corner offering pony rides. There was a little pony and and a beautiful palomino horse. Would they take me seriously if I got in line with the kids to go on a ride? How I longed to climb up in that saddle.

I lived on my grandpa's farm as a young child and later my family lived out in the country where my grandpa would let us keep a horse of his once in a while. I loved the feeling of being on horseback. As I grew older, the opportunities to ride horse grew less and less and are now almost nonexistent.

After taking a bumpy but fun ride on the wagon and getting some pictures with the team, we made our way over to the corral with the two horses. I was all set to get Faith on the little pony and have me and Michelle hold her upright while the volunteer walked us around in circles. But to my surprise someone asked if I could like to get on the horse with Faith. I climbed up on the horse and Michelle handed Faith up to me. I sat her in front of me in the saddle. I don't know who was more excited - her or me!

While the whole experience filled me with nostalgia, it was a whole new adventure for Faith. Hopefully, somewhere along the way in our journey there will be more opportunities to spend a day in the country, including horseback riding as well.

Thursday, September 24, 2009

The Rewards of Respite Care

Faith and Kimberly at Kimberly's college graduation reception

Last night when I came home Faith was so excited to show me the Mr. Pumpkin Head she and Michelle had made. There it was on our bookshelf, right next to two Mr. Potato Heads. By the looks of it, Michelle and Faith had a blast. Once again, I found myself being very thankful for such wonderful respite care providers.

I think Respite care providers are a must for anyone with special needs children. I have to admit, I felt a little guilty handing off my daughter to someone else while I went and did, well, nothing. But that was the point. When Rob and I found Michelle, we were at the top of our stress level. We both needed a break.

The difference between us and couples with non-special needs kids is they could just hire a babysitter or have friends and family look after their children. We on the other hand, need someone who has had special training to look after our special needs daughter.

Rob and I applied to have a certain number of hours a month that we would have respite care available to us. We did this through our disability case manager. When we first began, we had one respite care provider with just 20 hours a month. Now, we are up to two respite care providers for 45 hours a month. The increase in hours allows for Rob and I to spend more time together as a couple as well as have some precious alone time.

A couple of years ago after having just Michelle, we also found Kimberly, a college student majoring in early childhood development/special education. Since Kimberly knew she was going to be moving, she introduced us to Lindsey. I know of families who have a hard time finding the right respite care person for their child. Also there is often a high turnover rate with respite care providers. These are other reasons I am so thankful. It seems as though the Lord has found us the perfect respite care providers who have come to love Faith just as she loves them. And what a huge blessing that is!

Monday, September 21, 2009

Night Time Antics

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." "What's the matter?" "My hand is stuck." I'm sure it's not but I get up to check anyway in case it really is. It's not.

10:07 p.m. - "Mommy my sock fell off." I get up to check, both her socks are on her feet.

10:10 p.m. - Faith is thrashing, moving and scooting. (She is able to scoot while she is on her back.)

10:12 p.m. - "Mommy could you help me please, please, please. I'm really stuck." I get up to check. She has managed to scoot up to the head of her bed and is unable to go any further. I lay her back down in the middle of her bed and tell her she has to go to sleep.

10:15 p.m - More thrashing, making noise, singing, scooting.

10:17 p.m. - Rob comes in to tell her to be quiet and that she needs to go to sleep.

10:20 p.m. - "Mommy could you come over here again." This time I try to ignore her and pretend I'm sleeping. "Again, AGain, AGAin, AGAIn, AGAIN!" Each time she repeats the word it gets louder. I pick her up and sing the "I love you song" to her and tell her to try her hardest to go to sleep.

10:25 p.m. - All is quiet. Is she asleep? Her laughter answers my question.

10:30 p.m. - "Mommy what does the word 'fabulous' mean?"

10:35 p.m. - "Mommy could you come help me?" "What do you need help with?" "I need to sit up." "Try to go to sleep."

10:36 - whimpers. I pray she is getting close to falling asleep.

10:40 - laughter. I try not to laugh myself. Even at this hour, her laughter is contagious.

10:45 - quiet. Finally, she is asleep and I am able to fall asleep too.

Friday, September 18, 2009

Questions from Kindergarteners

When I pick Faith up at kindergarten she is full of excitement wanting to share all that she did at school. And then when Dad comes home from work she relates to him everything she shared with me. Both Rob and I love to hear about Faith's time at school but we noticed something. She talks a lot about the adults - her teacher, her teacher's aid, her therapists, her special ed teacher - not much about her classmates though. Recently at Faith's IEP (Individual Education Plan) meeting at school Rob voiced this concern.

We know that Faith is more comfortable with adults. She has seen therapists since she was six months old. It took her a long time to warm up to her preschool classmates. Even after she warmed up to them, their sudden noises and movements would cause her to startle. Adults are more predictable to her than other kids and predictable for her is comfortable.

At kindergarten Faith is around 18 other kids which causes her to proceed with caution. Her teacher assured us that it would take time for Faith to get used to them and for Faith's classmates to figure out how to relate to her. She said there are already signs that a few of the kids want to be her friend because they are her special helpers.

Yesterday I accompanied Faith on a class field trip to the pumpkin patch. Two of the little girls thought it would be quite something if they were able to push Faith around in her chair. While they were pushing her they began asking questions. "Are you Faith's mom?" "How did you have her?" "Was she in your tummy?"

Later during the day, it was time to give Faith a feeding using her feeding pump. The kids around us were a bit wide-eyed wondering what we were doing. They fired more questions. "What are you doing?" "What's this tube for?" "How does that get in her tummy?" "What does that stuff taste like?" "Does that hurt her?"

Along with trying to answer their questions in a way that they would understand I also showed them Faith's Mickey Button that her feeding tube was attached to. I think it was hard for them to comprehend but it was obvious they wanted to understand. One little girl asked how that button got there and I said a doctor had to do a little surgery. She replied, "I didn't know kids had to have surgery."

The questions went on and on. "What are those things on her feet?" (Orthotics). "How do you dress her if she can't stand up?" "How does she sleep?" "How does she go potty?"

I was encouraged by their curiosity. I believe they really did want to get to know Faith better and in order for that to happen they wanted to understand. I'm hoping that as her classmates ask more questions and get to know her more, Faith will be more comfortable around them and vice versa. I think we're off to a good start.

Wednesday, September 16, 2009

No More Glasses or Patches

Yesterday Faith had her follow up appointment with her eye doctor after a two-month trial without glasses or eye patching. He seemed quite amazed that Faith's farsightedness had improved and that the muscles in her eyes were working so that her eyes were "lining up."

Faith started wearing glasses when she was two years old for extreme farsightedness and esotropia - which means her eyes tended to wander inward. At that time the eye doctor told us that if glasses and eye patching did not correct this then she would need surgery. It took a while for Faith to get used to wearing her glasses but even when she did get used to them she didn't particularly like wearing them. She didn't mind the eye patch so much since it was just for half and hour a day and that's when we would read her books.

Fast forward to July 2009. Faith lost her glasses. My husband and I think it must have happened while we were outside and she just threw them off without us knowing. The timing wasn't bad since she had to go to the eye doctor anyway and I just assumed she would be getting new ones. Boy was I amazed when he told us she may not need them at all! He then told us we would do a two-month trial with no glasses and no patching to see how she did. None of her therapists nor I myself noticed a difference with or without her glasses.

I really do believe Faith received a healing from the Lord. I can't get over how shocked her eye doctor is about all of this - as if he was not expecting these results, or at least not expecting them so quickly, especially with her esotropia. Something else I find amazing is that we were in Canada for Christmas in December and some family Faith and I had never met came over for a visit. They noticed Faith's eyes turning inward and asked us about it. Just seven months later, her eyes no longer did that.

We do serve an amazing God, one who restores and one who heals. Jesus truly is our Great Physician.

Sunday, September 13, 2009

Nights Like These

Well, she caught it. It was probably inevitable but still I hoped. Faith caught my cold. Kids get colds everyday though, so why am I making such a big deal out of it? When Faith is sick, she doesn't sleep which means mom doesn't sleep. Another thing about Faith - she doesn't nap either. She has never been a napper. Oh how I envy my sister with her four-month-old who sleeps through family reunions and Cornhusker football games. (Live football games, that is.)

So last night, there we were. After sleeping for about an hour, Faith woke up crying. Was it her tummy? Her throat? Her ears? No answer, just more wailing and lots of tears. Finally, she calmed down and we slept for another hour before she was up crying again. This time she fell back asleep relatively quickly. A couple of hours later though, she was up again. I asked her if I needed to vent her tummy. Sometimes, when she cries a lot or when she's swallowing extra saliva it gets into her tummy. I vented and it helped. Then I heard lots of toots. Hoping we had solved the problem, we fell back asleep only to be up a few hours later. I took her into the living room and sat with her and she decided it was time to be awake. It was 4:00 a.m.

I put her on the floor and let her watch a video on her portable playstation. I layed down next to her and tried to sleep. Around 5:30 we finally went back to bed. I figured we would sleep until about 10 which meant we would miss church. I was surprised when she was ready to get up for the day at 8:00, runny nose and all. And even though she didn't feel well and we were all exhausted, Faith still wanted to go to church.

Nights like these are really tough on someone who needs at least six hours of good sleep to function. Nights like these are usually agonizing and I find myself begging God for sleep. But last night, there was something different going on inside of me. Instead of the usual agony and frustration, I Yes, I felt joy. It's not that I was happy to be awake instead of sleeping, but the joy I felt was the joy of the Lord. I had heard about people feeling the joy of the Lord through tough circumstances but I know I've never experienced it myself. Until last night.

This past weekend I went through some classes that taught what the Bible says about healing. Going through the classes helped me have a different perspective for what Faith and I were going through last night. Jesus already bore our sickness when He died on the cross. He bore ALL of our sickness, including this cold that was causing my daughter to suffer.

When I was praying for her last night, I was able to pray with a thankful heart for what Jesus had done. Focusing on Jesus instead of my lack of sleep allowed me to be filled with hope and that God's grace would be sufficient for us to make it through the next sleep-deprived day and every sleep-deprived day after that. I am learning more and more that the joy of the Lord truly is my strength.

Thursday, September 10, 2009

Half Days Are Still Full Days

After agonizing and praying over the decision to send Faith to school for half days or full days, we finally agreed that half days would be more than enough. I am finding that even only with half days at school, her schedule is full. She is quite the busy little bee.

While she's at school from 8:30 to 12:30 five days a week, Faith has two occupational therapies, two physical therapies, two speech therapies, four sessions with her special education teacher, library time, music, recess and physical education. Not to mention a full one-hour feeding and time in her stander. I can understand why the school's recommendation was to have Faith in school for five full days a week. With all that she has to do at school, she is also there to learn academically. But it was ultimately her parents' decision and I believe we made the best one.

When Faith comes home from her busy day at school she has her second feeding of the day and then after that she can finally get stretched and relax. She is so tired after school and of course I can hardly blame her. I know full days would have been too much for her, especially in light of her upcoming schedule.

Next week, she gets to go back to MedCenter for one physical, occupational and speech therapy session a week, plus she gets to have her favorite, hydrotherapy. Along with all of her therapy sessions she also has a doctor's appointment to get her Mickey button replaced and an eye appointment. This all makes for a busy mom as well!

School days are indeed busy ones but I know as a parent I can't get too caught up in the busyness. I have to take time for myself and I know Faith needs time for herself too. With all of the day-to-day decisions that need to be made, I must always remember to put Faiths needs above what others think is best for her. We know that when it comes to school, half days are best. We are in the minority, by far. I only notice a few other parents picking up their kindergarteners at 12:30. But that's OK, because for us half days are still full days.

Monday, September 7, 2009

People in Our Path

There's a song we used to sing in elementary school called "Up Up With People." Amazingly, I still remember all the lyrics. Up up with people, you meet them wherever you go. Up up with people, they're the best kind of folks you know. If more people were for people all people everywhere, there'd be a lot less people to worry about and a lot more people who care.

I know that since the beginning of our journey of having a daughter with special needs, there have been many people who have been 'for us'. They have wanted what we wanted, the best for Faith.

If I were to begin naming names, I know I would forget someone because there are just so many people that God has put in our path to help Faith grow and develop to the best of her ability. This list includes doctors, therapists, interventionists, teachers, teacher's aides, case managers, caretakers, counselors and even receptionists. Besides, professionals, however, there are also those who have prayed for her incessantly and thanks to those prayers we have witnessed tiny miracles. Then there are those everyday people who come up to her in the grocery and department stores or wherever we are out and about and tell her what a beautiful smile she has. These people really make her day. There is also a local restaurant we often go to where the whole staff gets excited to see her.

I often hear terrible stories of people who have had difficulty navigating through the medical system or who have insurance nightmares. I know of frustrated parents who can't seem to get the help that they need. They go through many trials before finding the right network of people to help them with their special needs child. I have thanked God many times that this has not been the case for us. Since the beginning, when Faith was born at Mayo Clinic she has always had the best of care. The Lord has truly put the right people in our path.

Thursday, September 3, 2009

The Short Walk Home

Everytime I take Faith to school and then bring her back home, I am reminded of how God arranged for all of our needs to be met. Last spring, we were getting concerned about where we lived and how it was going to work for getting Faith to Kindergarten in the fall.

The apartment we lived in, which was not handicapped accessible, was close to downtown and was close to Faith's preschool. During most of the time at this address, my husband stayed home to take care of our daughter. I worked in Mandan and had to take our only vehicle to work everyday. This wasn't a major problem for my husband because he simply walked Faith to her therapy sessions, walked her to preschool and was able to carry her and her chair up and down the stairs of our apartment.

Things changed last November when Rob got a job and I was able to stay home with Faith. It was more difficult for me to carry Faith up and down the stairs and because of the winter we had, it was much harder getting her to school and to therapy. Thankfully, Rob's job was nearby so he could walk to work and I could have the car. In January, however, Faith got a new chair which I was barely able to get into our car and which I could not get up and down the stairs. I was beginning to wonder if it was a mistake that I was the one home with Faith. I began getting discouraged and wondered how a person with a heart defect was supposed to be able to care for her special needs daughter.

"Let not your heart be troubled," says the Bible. As I prayed about our situation, God was putting everything in place to make our lives more manageable. My husband and I realized we could no longer live in a place with stairs so we began hunting for an accessible apartment. I was surprised at how many options we had. Another thing we had to keep in mind, though, was that Faith was going to be in Kindergarten and we only had one vehicle, which meant we were going to have to get Rob to work and Faith to school all in one car. How was this going to work, we wondered?

God had a plan. One of our last choices on our list of places to live was a place called Ithica Heights. One day, I drove to Ithica Drive to check out the complex and when I was leaving I drove down the street and there I saw an elementary school - practically right next door to the apartment complex! I called Rob and excitedly told him about my discovery. I set up an appointment to look at a two-bedroom apartment. The manager also showed me a three-bedroom apartment, which I didn't think we could afford but I wanted to look because I thought it would be great to have an extra room for an office.

A few days later, I called about the two-bedroom and someone had put a deposit down on it which meant it was not available anymore. But the three-bedroom was. When Rob and I went to look at it again we explained to the manager that we wanted to live here because it was right next door to a school for our daughter and that we knew the school was handicapped accessible. We also explained to her we wanted the three-bedroom but we weren't sure we could afford it. She talked to her boss and they agreed to knock the rent down a little bit to make it more affordable and so that Faith could go to school right next door.

We moved to our new home in April. And now, everyday I get to walk Faith just down the street a little ways to her new school and then I take the short walk home. God truly has provided for all of our needs and I know He will continue to do so!