Sunday, June 27, 2010

Faith's New Friend

Faith likes dogs. Let me rephrase - Faith likes quiet dogs. And today she met one of those quiet dogs, a cute little pom-a-poo named Molly who is now her new friend.

Today Faith and I took a stroll down Ithica Drive to our friend, Mrs. Volk's house. We became friends with her when she was assigned to work with Faith during kindergarten. They became quite fond of one another. I was so thankful all year for being able to have someone I could completely trust to take care of Faith during the school year. When we got closer to her house, we saw Mrs. Volk outside walking her dog, Molly. When we got inside, Mrs. Volk held Molly up to Faith so Faith could pet her. Faith was very gentle and really liked to touch her soft, fuzzy ears.

Faith also liked it when she saw what tricks Molly could perform. Molly was quite the entertainer, sitting pretty, shaking hands, rolling over and speaking - all for treats of course. Faith sort of jumped when Molly "spoke" but then Faith made Molly sort of jump too with her own high-pitched squeals.

When Molly wandered away looking for a place to nap, Faith would say, "come here, come Molly" in her sweet little voice. Later, Mrs. Volk's husband came in and Molly followed him upstairs. Faith listened very intently for the little jingle of Molly's collar, hoping she would come back down. Faith could have been with that little dog all day and she would have been perfectly content.

When it was time to go Mrs. Volk and Molly both walked with us part way up the street. Faith kept her eye on Molly the whole time. And when it was finally time to say goodbye Mrs. Volk held Molly up to Faith and she said, "Good-bye, Molly. And remember, I love you!"

Oh how I wish Faith could have a sweet little dog like Molly. Maybe someday. In the time being, we'll just have to find more quiet dogs for her to befriend.

Friday, June 25, 2010

Faith's Feedings

Faith was around two years old when she got her Mic-Key button and began eating via feeding tube. And honestly, it was a nightmare. She hadn't been eating enough to gain weight or to meet her nutritional needs so this was really our only hope. She had the surgery and was discharged that night. When we brought her home we did just as the nurses told us to do. We hooked up a large syringe to her feeding tube that was connected to her button and slowly allowed the liquid to go into her tummy. When we first started out, she was receiving three ounces of Pediasure every three hours, four times a day.

Sometimes the liquid went into her tummy too quickly and she ended up with an upset stomach, vomiting it back up. We learned to go as slow as we could and it took a lot of patience. It took us about 30 minutes to get all three ounces into her tummy. Another issue with her enteral feedings is that if she moved too quickly after receiving her feeding she would throw up. We had to learn to allow for her to be able to just sit for up to an hour after her feeding before taking her out of her chair. It was all a slow and painful learning process.

Sometimes she ended up with air in her tummy and that caused her to throw up as well. Rob and I both experienced a lot of throw ups - him more than I since he was home with her at this time. Sometimes we could stop it by attaching the syringe to her tube and button and getting the air out of her tummy, which is called venting.

There were also times that she had just gotten a feeding, her tummy would be completely full and then she would have a bowel movement. With her trying to push everything out, sometimes the fluid got pushed up and another throw up ensued.

It seemed to take forever for her to be able to digest three ounces, four times a day. Along with these feedings we were also supposed to be offering her solid foods as well so she wouldn't lose that oral stimulation and that desire to eat. It was hard to know when to offer her solids because we didn't want her to end up with an upset stomach. It was all a learning process.

Eventually we reached the stage where she was receiving four ounces, four times a day. We still had the occasional throw up due to air or her having a bowel movement but things were getting much better. Her pediatrician wanted to see if we could get even more Pediasure into her so he wanted us to try feedings at night. This meant we had to get a pump. We would hook her up to the pump after she had fallen asleep and set the pump's rate so she received an ounce an hour. Some nights she did okay with this, some nights we had to shut it off because it seemed to be affecting her sleep. Then in the morning we had to try and gauge how long we needed to wait before starting her first feeding of the day.

We began to use the pump for her feedings during the day as well. It was nice for me and Rob because we didn't have to sit there for an hour and manually give her her food. We just let the pump do the work for us. Whether she was being fed manually or with the pump though, we had to find a way to keep her entertained for the duration of her feeding. Most kids can just get their feeding dumped in quickly with no problem but Faith's tummy seemed utlrasensitive and just wouldn't tolerate quick feedings.

We bought her a personal DVD player. Her first DVD was Cookie Monster's Best Bites. She had never seen a DVD before and she was totally enthralled. We then began to add to her collection and bought her the Praise Baby DVDs which she loved. She also liked some of the Baby Einstein DVD's and Elmo's World as well. To this day this is her favorite activity during a feeding, it allows her to totally relax which helps with her feedings.

It has been a long road these past four years with Faith's feedings. We really hoped in the beginning she wouldn't need it for very long. We had heard stories of kids getting the feeding tube but not needing it after a few years because they began eating more solids. This was not the case for us. For whatever reason, Faith just does not eat enough food. She likes to eat solids every once in a while but not very much in one sitting.

To date, Faith has probably gained 30 pounds since having her g-tube. She is now up to receiving 10 ounces of pediasure every three hours. That's a lot more than the three ounces she started with! On occasion, she still has throw ups but it is a lot less than it used to be. We are still hoping and praying she will not always need to be fed this way.

Sunday, June 20, 2010


 Due to logistics and other reasons, Rob was not able to witness Faith coming into the world. She was born in Rochester, over 600 miles from home. Rob found out he was a daddy when he stopped in Fergus Falls, Minnesota to make a call to his mother. She told him he was a daddy! He got to Rochester just before midnight on the day of her birth - October 25, 2003.

When Rob first saw Faith's tiny little body - just over 2 lbs., she was covered with tubes and lines all hooked up to different apparatuses. What was supposed to be one of the most joyful events of his life was one of the most frightening. After spending time with a daughter he couldn't even hold, he came down to the hospital to see me.

I was still pretty out of it but I do remember coming up with Faith's middle name - Faith Jean Armour. (Faith has both mine and Rob's middle names). We visited her in the NICU as much as we could. She looked so tiny and fragile but we knew she was a fighter. Finally, one week after she was born, Rob and I got to hold her.

After two weeks in Rochester, Faith was transferred to Bismarck. Rob and I lived at the Ronald McDonald House for the next two months. Faith was discharged from the NICU on her original due date, January 5, 2004. We lived in Watford City at the time and after Faith was diagnosed with CP, we moved to Bismarck so Faith could get the best medical care and pediatric therapy possible.

Since moving, Rob was a stay-at-home dad for four years. He and Faith went through a lot together. In that time, Faith and her dad established an incredible bond with one another. I feel so very blessed that Faith has such a wonderful dad. Since she was just a baby, Rob has made it a point to give her three hugs in a row while saying, "Daddy loves you." I don't think he's missed a day. She knows without a doubt how much he loves her. She knows she is safe and protected in his presence. She knows that her daddy prays for her and that some of those prayers have been answered.

I am so thankful for my husband who strives to be the best daddy he can be for his little girl. Happy Father's Day Rob!

Friday, June 18, 2010

What a Wonderful Week!

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 hours of playing, our friends walked with us back home which was a great time as well.

Tuesday - Faith had her annual eye exam. At last year's appointment, her optometrist told her she no longer needed glasses, which she had worn since she was two. He had also told us we didn't need to have her wear an eye patch for a half-hour each day because the muscles in her eyes were much improved. I really believed God had healed her vision. So this year I was hoping to hear the same news and we did! She still doesn't need glasses and still doesn't need to wear the eye patch. We are so thankful! We celebrated afterward with a Frosty at Wendy's.

Wednesday - Faith had speech therapy in the afternoon which is usually fun for her as she gets to read or make up stories and do some work on the computer. That evening, her respite care provider (and friend) Michelle, took her to the zoo where the library had a special reading program. There were puppets telling stories and singing songs. Faith really enjoyed it and of course she loves going to the zoo. As soon as they got out of the van, she was telling Michelle all of the animals she wanted to see and pet.

Thursday - Weatherwise it was not such a great day as a windstorm had blown through the night before taking down parts of trees. And in the afternoon there was actually a tornado watch. I had been planning on taking Faith back to the zoo for her friend's birthday party. Though it was windy and the skies were gray, we decided to go for it. Thank goodness the first part of the birthday party was held indoors as we all listened to a torrential rainstorm pound down from inside the building. And when it was time to go outside and see the animals, it was as if God had parted the clouds and allowed the sun to shine just for us! It ended up being the perfect day to be at the zoo!

Friday - This morning while Faith is at school, I am looking forward to a friend and Moms In Touch prayer partner coming over and praying for the kids at Centennial while they are in school for the summer.

This evening Faith is going to be reunited with a former respite care provider, whom we have remained in contact with and have seen from time to time. Kimberly first started working with Faith when Faith was three years old. She has been in another town teaching but is back for the summer and we are all looking forward to Kimberly and Faith spending time together once again.

Thank you Lord, for this wonderful week that has been so full of blessings.

Wednesday, June 16, 2010

Toys Faith Enjoys

It can be hard for us to find toys that Faith likes to play with, especially for longer periods of time. There are very few toys we have found that she can play with entirely on her own. When she was three her early interventionist introduced us to the world of adaptive toys - or toys that are adapted so that kids with disabilities can play with them.

We bought her three adaptive animal toys, plugged her button switches into them and when she pushed the button it would cause the animal to move and make a noise. She had a drumming bunny, a kitty cat and a duck. Oh yeah, and an adaptive toy coffee maker that I think Rob liked more than she did! These toys were great for teaching her cause and effect but she got bored of them pretty quickly. We haven't invested much money into adaptive toys because they are so expensive plus we don't know for sure if when we buy them for her she's even going to like them.

One adaptive toy we did buy her recently for her birthday was an adaptive PlayStation controller. Of course, it's daddy's dream to play PlayStation with his daughter. And of course leave it up to Rob (or as we sometimes call him, Techno Bob) to figure out a way to hook up the controller with our PlayStation 3 instead of the PlayStation 2, which it is designed for.

We find it works best when we hook up Faith's button switches to the controller then it's kind of like driving her chair. Say she's playing her Cars game, she can hit one button to make it drive to the left, one button to make it go right and another button to drive it forward. We've also played Wheel of Fortune with her which is lots of fun. She hits a certain button to spin the wheel, another to buy a vowel and so on. She guesses the letters but we help her solve!

Some non adaptive toys we have found that she likes includes:

Candyland - I love playing this with her! If I hold the deck of cards up for her, she can draw one, look at it and tell me the number and the color of the squares. She has a little trouble identifying the little pictures with the pink squares so she just calls them all ice cream cones. Faith is a little competitive though and likes to win!

Hi-Ho Cherry-O - Another board game that she can somewhat play if I help her. She can spin the spinner on her own and tell me what it lands on. But the cherries are so tiny so I usually put them on and take them off of the tree for her. She does like counting the cherries when we take them in and out of the bucket. She's good at this one too and usually beats me.

A Keyboard - Rob had an extra keyboard laying around so he let Faith have it as a toy. She loves it! She sits at the table and pretends she's typing in stories and rhymes. She also pretends she's going to different websites. She does great with opening her hands on the keyboard which is great to see.

Potato Head Playskool Toy Story Mr. Potato HeadMr. Potato Head - She received this for a Christmas gift two years ago and still loves it. We sit at the table together and she likes to pick out the eyes, nose, arms, etc. and I help her put them on. Then she loves to take it apart and can do pretty good if I hold onto it for her.

Puzzles - She really likes putting together puzzles. Of course, another toy I need to help her with and sometimes we spend an hour doing the same puzzle over and over again! She especially likes her Sesame Street puzzle that has a winter scene on one side and a summer scene on the other. I help position her hands so that she can be the one to press the pieces into place. She's not a traditional puzzle-put-togetherer though as she doesn't necessarily put all the edge pieces together first. She likes to do things in groups like the sky first, then the grass, then each character or color.

Lego - We bought Faith some really pretty Lego with pink and purple pieces included. It came with pieces to build a little house. Her Lego collection grew when Rob bought her an  Indiana Jones Lego set (maybe more for himself than for her). Then she got the ultimate Lego set - Rob's sister had all of their Lego from when she and Rob were kids. She washed all of the pieces and mailed it to us. We have lots of Lego! Me and Rob help Faith push the pieces together - her favorite things to build are high towers and houses. Then she helps take everything apart. Rob especially has built some real Lego masterpieces and is always a little disappointed when Faith wants to take them apart right away.

Blocks - She has a traditional set of wooden blocks that have letters and numbers on them. She really likes to stack them up and make high towers. She loves to knock them down and crash blocks everywhere! I try to get her to knock them down on her own. She gets so excited that her arms tighten up and she can't quite reach. I kept telling her I know she can do it and after a few tries she usually does without me having to move it closer. Since she's been learning her numbers and letters, we've also been using the blocks for that too.

V Tech - V.Smile Rock & Sing Musical CarRock and Sing Musical Car - (made by VTech) This is probably her favorite toy ever. She received it for Christmas from her Auntie Joh when she was just 14 months old. This is one toy she could play with all on her own, and she still plays with it! When she was a baby and toddler she would lay on the floor and sort of curve her body around the car. There is a handle on it so she would grab it and push it back and forth and it would make music and sounds. A couple of years ago Rob accidentally stepped on it and broke the handle off. We looked into getting her a new one but it cost like over $100 on Amazon because the toy is no longer being made. Thankfully, he was able to fix it with Duct tape!

And of course there is her Baby Allie, her books, DVDs, her PSP (PlayStation Portable) that she likes too. Next, I would love to get her an iPad - which probably won't be for a while. I got that idea from another blog I read about a girl named Caleigh who has CP and uses an iPad. It would be a portable version of the touchscreen computer she uses at school. And I'm sure mom and dad would have fun with it too!

Friday, June 4, 2010

A Trip to the Salon

Faith loves getting her hair cut. Well, she may not like the actual cutting part since I have to hold her head down or to the side so her hairdresser can cut where and how she needs to cut. Sometimes she is very squirmy and her head is all over the place, especially when she's talking and excited. She does love getting her hair blow-dried though. But I do think a lot of Faith's excitement about getting her hair cut has to do with  the person who does her hair. Her name is Julie and she's my stylist too.

Julie is sweet, kind, pretty and very talented as well. We found her when Faith's occupational therapist recommended us going to a salon in Mandan. That was Faiths' first haircut at a salon. Rob's parents were in the country so Jean came with us. Faith was so good and the hairdresser did a great job with her. I think she only charged us like $5.00 or something. (Then Jean gave her a $5.00 tip).

I then decided I wanted to get my hair done at the same salon. The lady who cut Faith's hair was unavailable so I agreed to go with Julie - whoever that was. As usual, when getting my hair done by someone new, I was a little nervous. But Julie made me feel right at ease. She mentioned church a couple of times and it seemed she was a Christian. The next time Faith got her hair cut at that salon it was with Julie. It was no problem for them to move the salon chair out of the way and put Faith's wheelchair in it's place. They were so accommodating to Faith's needs. Julie also took special care to cover up as much of Faith's chair as possible so as not to get hair all over her chair.

Julie has since gone out on her own and we have followed her to her new shop. This is probably a good thing - it's nice and private without other people around so Faith can be as loud as she wants. She gets pretty excited when she sees Julie. And after her haircut is all done, Faith makes sure to repeatedly tell Julie she has to sweep all the hair up off of the floor. Faith really does not like messy floors.

Yesterday we cut a couple inches off of Faith's long, thick hair. Hopefully this will make it easier to wash and help it be less snarly. Sometimes as soon as I touch a comb to her hair, she's telling me, "that hurts" and then in the middle of combing her hair she tells me we need to take a break. Rob really doesn't like to hear Faith complaining when I'm combing her hair (I really do try to be gentle) so he always wants to get her hair cut as short as possible. Once he was at Julie's shop and asked Julie, jokingly (I think), to cut off all of Faith's hair. Julie said she would never do that. We are really, truly thankful for such a great stylist!