1 Corinthians 13:13

And now these three remain: faith, hope and love. But the greatest of these is love.

Tuesday, April 23, 2013

AFOs Finally and Last Swim Lesson

We started out our morning picking up Rachel's new AFOs from Hanger. Grandma Eisen went with us today. We had a very long wait time after Rachel's AFOs were checked for fit until the orthotist returned back to the room.
Rachel's expression in this picture expresses all of our feelings about the wait time. I didn't get very good pictures of Rachel's new AFOs today but will post more when I take some better pics.
Top view-
Side view of the butterflies. After picking up Rachel's AFOs we headed to Stride Rite for some shoes. Not too surprised to find out they didn't have any shoes that fit over her AFOs. We did however find out that she would need a size 6. The great thing about the size 6 is that Rachel has a box filled with size 6 shoes up her closet that a friend of mine gave me when her daughter outgrew them.Now that Rachel will have AFOs for both day and night time I am going to start using skin prep on her heels and the tops of her feet. 

Grandma Eisen is a shopper! She bought Rachel 2 new swimsuits from Gymboree. They are so cute!
Front view of swimsuit #1.
Back view of swimsuit #1.
Front view of swimsuit #2
Back view of swimsuit #2
Tonight was Rachel's last swim lesson. She was the only baby there tonight. We had a great experience with swim lessons. Thank you Jen! We hope to have you as Rachel's swim instructor this fall! Tonight was fun night so Rachel was able to play with the toys with Breanne. She still wouldn't say "octopus" but we will work on it for future lessons.
Rachel digging for toys!
Climbing out of the pool.
A fuzzy picture of Rachel putting the pool toys into the toy box.

Monday, April 22, 2013

Mama Please

Every day I work with Rachel to say "mama please" when she wants more to drink or a small snack or help in general. She has gotten very good at saying "thank you" and "your welcome" but chooses not to say "mama please". Last week I had bought a package of oreo cookies to make dirt cake for Rachel's sisters.I have been working on being healthier since the beginning of the year so there have been very few sweet items being brought into the house. I divided out about 8 oreos for Rachel to eat over the week. She had never had an oreo before and soon learned the word "cookie".It didn't take Rachel long to finish her cookies over the week either. During therapy today she kept saying the word "cookie" and I had to tell her we did not have any. I took Rachel with me to the grocery store later in the day. We went into the cookie aisle (our store keeps the granola bars, juice and oatmeal in the same aisle) to buy more granola bars. I didn't say a word when we entered the aisle but Rachel spotted the oreos immediately and began saying "mama please, mama please, mama please" and pointing to the oreos. Needless to say I left the store with the family sized package of oreos. I am glad to know she has been paying attention. I think she is a smart cookie! When she doesn't know what something is she says "what is this?" We hear "what is this" several times each day. For a 20 month old (18 months adjusted) her vocabulary and ability to name objects amazes me.
Rachel's first big girl pony tail. So cute!
She is getting so big!
Taking her bunnies for a walk. I am going to have the sew that girl some knee pads. She didn't want to stop.
Wearing her coat and her sister's beret she reminds me of the doll strawberry shortcake.

Wednesday, April 17, 2013

Making Progress

Miss Rachel has started staying upright on her knees and pushing her bunnies around the house. While she may not be on her feet while pushing them she is using the leg and hip muscles she will need for walking.
It was hard to catch her in the act. As soon as we bring out the cameras- she becomes bashful. The funny thing about Rachel doing this is- she threw a temper tantrum during therapy the previous day and refused to touch the walking toy. That night her big sister Alicia pushed it around the house on her knees and Rachel watched.
We are looking forward to picking up her AFOs next week. In the picture below you can see that even with the SMOs on- she still has problems picking up the right foot at times.
During physical therapy yesterday- Rachel took 8 steps and then 10 steps pushing her shopping cart. The shopping cart is made by Little Tykes and is very sturdy. Rachel can pull herself up on the sides without it tipping over.

 Rachel is also quite the chatterbox. She now is using several 2 and 3 word phrases and has an excellent memory.

Swim Lesson Number 7

Last night's swim lesson began by having the babies dig in the water for pool toys. They were also given a pool noodle and kick board at the same time as the digging was going on. Rachel loved the pool noodle and happily let it under arms while reaching for toys. She placed her toys on the kickboard. Her swim instructor has been working on trying to get Rachel to say "octopus" since the first swim lesson. She got close last night by saying "octo". Next the babies practiced 1,2,3 Go at the side of the pool. If your baby stands up you could practice the 1,2,3 Go while they were standing. Rachel wanted no part of this. After this- the babies practiced the pancake song and blowing bubbles in the water. The babies then helped pick up pool toys - each time they grabbed one- you would turn the baby over in the water. The swim lesson ended by having your baby with their back on your chest and kicking off of the side of the pool. None of the babies there last night wanted to do this. I think next week is our last week of swimming lessons until the summer sessions starts.

Wednesday, April 10, 2013

Swim Lesson Number 6

Last night we had swim lesson number 6 at the Y. Our night did not begin well at the Y. Rachel had been sitting up on the bench in the locker room. I had my hand on her abdomen to help support her and she had been doing really well. I moved slightly to put my glasses in the locker and Rachel tipped backwards falling off of the bench. I felt terrible about her falling. She bumped her forehead and sustained a small scratch and bump to it. I immediately went into nurse mode and started neuro checks on her.I tried to get her sister to get an ice bag from the front of the Y (all of us were in swimsuits only at this time) but she refused due to a boy she knew was in the front lobby. (seriously? Bre is 5'5" and maybe 104 lbs) Rachel stopped crying within 3-4 minutes of falling and went into her usual happy mood. I continued doing neuro checks on her until she went to bed and her dad woke her up about 3 times during the night to check on her. She woke up this morning with the scratch and small bump as her only residual from the fall. I still feel 100% terrible about it.

During the swim lesson we had the babies practice digging with their hands while reaching out for pool toys. I kept Rachel on her tummy but instead of digging with her hands she spent the time kissing the toys she caught and kicking. We practiced 1,2,3 Go at the side of the pool with longer periods of time for the little ones to wait before getting in the water. I let Rachel slide into the pool into my arms when she was ready instead of lifting her in. She did really well considering the basket of pool toys was less than 2 feet away. Next we sang If Your Happy and You Know it while doing motions in the water (clapping, splashing the water, up and down, and side to side). After that we placed the babies with their backs on our chests and had them put their feet on the sides of the pool, We had the babies push off of the sides of the pool with their feet and helped them float backwards to the other side of the pool and do it again. Rachel didn't seem to fond of this as each time we reached the side of the pool she would try to climb out to get more toys. She dunked 2 times during the swim class. Right as the swim class was ending Rachel declared it was "Night Night" time to the other babies. The adults in the group seconded her suggestion- it was cute. Rachel's swim instructor was very pleased with the progress she had made since the beginning of the lessons. Rachel turns herself in the water from front to back, back to front and on her sides. She seems very comfortable and relaxed in the water and loves it. Her instructor had also commented to me "that I shouldn't have been worried when we started lessons and that Rachel has been able to do everything all of the other kids were able to do." She also stated that upper body strength is much more important in swimming and that the legs and feet are pretty much just for balance. These are great words and I hope to hear more about our other spina bifida brothers and sisters in the water.

Ignore the mess in the backround (after effects of Dad allowing a sleepover while Mom was away working)- what you see in this picture is Rachel's new favorite thing to pull up on and push in front of her. The sleepover girls left a bowl of cheetos on the table. Rachel had never had a cheeto before and took one out of the bowl. She must have thought they were great because she spent a lot of time pulling up and taking little steps behind this table to get to the rest of the cheetos. Sadly for her, Lucky snatched up the rest of the bag of cheetos.
Our front porch rail is another great motivator for Rachel to stand by. She likes to pick up her feet and put them on the bottom of the rail. (yes our porch is ancient- our house was built in 1926)
Updated pictures of her pressure sores healed. Yes- it is as difficult to paint the toe nails on a spina bifida toddler with little to no toe movement as it is a normal toddler.Instead of them wiggling their toes around they try to kick you in the face while you are trying to apply the polish. She wasn't too cooperative when I tried to clean up the areas that needed it.
The healed surgical scar on her right foot and healed pressure sore on the back of her calf.
The healed surgical scar on her left foot. This scar is not nearly as big as the one on her right foot.
The healed pressure sore from the top of her left foot. One thing I find interesting about her feet- is the position of her leg on a surface determines how clubbed her foot appears at the time. If I would have taken a picture with her leg straight out in front of her- it would not look as nearly clubbed as it does in this picture.
Could that be some red hair coming in? Her physical therapist thinks so but I see it daily so I haven't really notice if it is changing.
Someone likes to climb on top of the toy box and stand up to look out the front window.Rachel's AFOs will be ready on the 23rd of this month. She is wearing the pair of SMOs (aka AFO shorties) in this picture.

Tuesday, April 2, 2013

Swim Lesson Number 4 and Number 5

We sadly missed last week's swim lesson. Steve had went to Chicago to compete in a regional cyber defense competition over the weekend. Which left me having to work on Tuesday night to make up for being off while he was gone. Go Red Team!! (Very proud of him)

No spring has not sprung in Wisconsin. After having a cold winter- when the temperatures hit 40 degrees out- it is the beginning of shorts season here. We went for our first family bike ride of the season with snow packed along the sides of the bike trail. Rachel was bundled up in her bike trailer with extra blankets.

  Rachel loves going for bike rides. She happily chats away.She loves pointing out dogs that are on the trail walking.

Yesterday was my mom's birthday. We packed up the kids and dog and heading up to the Iron Mountain area. This is about 4.5 hours away. It was 24 degrees out up there and definitely did not look like spring.
This picture was taken just north of Pembine and the snow did not get any less the further north you went. We saw a lot of turkeys eating the road salt on the sides of the roads.It was great to see Grandma and Papa and have birthday cake with them. I felt bad that we had to head back home only a few hours after we got there due to school and work schedules, physical therapy appointments and swim lessons.

Rachel had physical therapy today. She was able to stand for longer periods of time. She has been doing the full flight of steps (all 14) in our home about 4-5 times each day. She had been alternating her working leg and support leg while doing the stairs. She did a few more wobbly hesitant steps with her therapist. Rachel did a good job of standing up with her butt against the ottoman for support. She did not wobble or need to put out her hands for balance. I wish I would have recorded her. She seems to becoming more aware of her legs and feet. The more she wears her night AFOs and SMOs during the day- the more flexible her ankles are becoming. She rarely pulls her leg away when I stretch out her feet and ankles.

Swim lesson 5

We began today's class by singing the song about who came to swim class. Next we practiced sitting on the edge of the pool and doing our 1,2,3 Go. Instead of lifting Rachel into the water I let her push herself off of the pool edge and into my arms in the water. Next the instructor had the babies reach for small (about 9 inch) rubber balls in the water. When the baby would grab ahold of the ball you would turn the baby over onto their backs in the water. After we did this we helped the babies pick up all of the balls out of the water. We then were given small kick boards and pool toys. For today's lesson the baby just needed to get use to being by a kick board. We placed some of the pool toys on top of the kick boards and would let the babies play with the toys and try to hold onto the kick boards. Next we sang the song Ring Around the Rosie. We would alternate with splashing our hands on the water with blowing bubbles in the water. At the end of the song you were to have your baby facing you and dunk them in the water. The instructor recommended lightly blowing on their face first and then dunking them by pushing them away from you in the water. When you lift the baby back out of the water you need to cheer and act like it was the greatest thing they ever did. (You are to show no fear or apprehension in your expression or else they will pick up on it and also become fearful- this was not a problem for us as we do this at each doctor's visit.) The first time I dunked Rachel she swallowed a small amount of water and clung to me for dear life. Then a pool toy floated by and she forgot all about doing it. I dunked her 2 more times and after each of those times she did responded like it was no big deal and that she does it all the time. She did better with the dunking than I would have.I think it helps that she watches her sisters dunk themselves in the pool. We ended the lesson by having the babies help pick up the pool toys.