1 Corinthians 13:13

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

Monday, March 25, 2013

AFO Shorties

Rachel's physical therapist brought with a pair of AFOs for Rachel to use temporarily until hers are ready at Hanger. They fit her perfectly. No red spots with any of her skin checks. They are shorter than what Rachel's will be and mainly help support the ankles. Rachel's ankles have a tendency to like to roll in on her.
We took out the insoles out of Rachel's shoes to accommodate the AFOs. Her shoes (size 3) just fit over them width wise. Rachel still has a fair amount of toe room in the shoes. In reality her 19 month old feet are the size of a 9 month baby yet. Little feet- big heart!

I had a hard time getting a picture of them on her feet and with her shoes on. My model was very busy.

The busy model plotting. Rachel had a good therapy session. She did a lot of standing, took a few wobbly steps and attempted to cruise the couch. She was motivated by some captain crunch. I usually do not buy it due to it having more than 10 grams of sugar per serving but she really liked it.

Wednesday, March 20, 2013

Swim Lesson Number 3

Last night Rachel attended her third swim lesson. She is sooooo happy in the water. She chatters the whole time and laughs. Last week her sister Breanne and I laughed because Rachel would squeal at the male lifeguards at the Y. I thought it was just a thing for that day that she was doing but no last night she did it again. It reminded of when I was a teenager and loved the tv show Baywatch (minus David Hassellhoff -too old). Rachel is going to need to make a tee shirt on Zazzle that says "I heart lifeguards".


We had a new baby girl join the swim class last night. She was cute! We began by spreading the pool toys in the water and having them dig with their hands. We did this for quite awhile. Then we sang BINGO and with each missing letter you could either slap the water with your hand or blow bubbles in the water. Rachel was not into slapping the water and opted for blowing bubbles. We then sang another song about a pancake. (sorry I do not know the name) During the pancake song you place the baby on their back onto your chest and then flip them onto their stomach at the end of the song. Rachel enjoyed this. We then practiced kicking both on their backs and on their stomach. Last night was Rachel's best kicking night on her back. She really had some rhythm going. It is so great to see her getting stronger. It maybe alittle at a time but it is such a good feeling. Makes you really stop and appreciate. We then practiced sitting on the side of the pool and doing the 1,2,3 Go! Rachel likes this too! It did not take her long to understand the word "Go" as she now shouts it at us if we do not do as she wants. (We have also been utilizing the 1,2,3 Go such as when waiting to be lifted out of her highchair and other times when she needs to wait for safety). We then had the babies dig and kick some more to pick up all of the pool toys. Rachel is becoming good at this and I think it is time she learns to pick up toys at home. We ended the swimming lesson by playing with fish shaped watering cans- watching the bubbles come out of the cans when then filled and pouring them on ourselves and back into the pool.

Alicia was happy with her swim class last night also- her instructor offered any on them to jump off the diving board and he would be there to help them once they were in the water. She was the only one in her class to do it and she was quite proud about that.


Tuesday, March 19, 2013

Please vote

One of my friends from work told me about a family that needs some help. This is the information my friend Amie gave me about the family in need.

"Our friends Bob and Linda are full-time caregivers to their daughter Tiffany who has MS and her daughter Kayleigh who was born with multiple physical and mental disabilities. As Tiffany's symptoms from MS grow worse she sometimes requires the aid of a wheelchair and Kayleigh will never walk and is wheelchair bound. This family is in great need for a wheelchair accessible van for transportation and are currently in a contest to win one. All you have to do is is go online and vote for this family. The contest runs through May 10th and you can vote once a day."

To help go to

Please place your vote and pass the word. Thanks!

My heart goes out to their family. Hats off to the Grandparents to lovingly care for their daughter and granddaughter!

Stair Climber!

Here is a video from today of Rachel climbing the stairs with her sister Breanne. She made it up 7 stairs in a row in less then 40 seconds. She is my spina bifida rock star today!

Here is another video of Rachel giggling at her sister Breanne.

Monday, March 18, 2013

AFO's Take One

Last week Wednesday Rachel and I picked up her pair of AFO's  from Hanger. I was not too happy to find out that her ortho doc and the orthotist decided to make her night time AFO's instead of the daytime ones we had discussed. I think it would have been nice for one of them to have called us and talk about the change of plans. This pair of AFO's is to be worn during naps and at night time. The heel has extra padding to help prevent heel sores and they are also made to be extra long to accommodate growth and to prevent blankets and sheets from resting on the toes causing sores.
There are stickers inside each AFO to identify right verses left foot. I do like the butterfly pattern we picked out.
Her toes are to end around the bottom of the sticker. I think the length makes Rachel look like she has pixie elf feet.
Right foot- this view helps show the thickness of the padding inside the AFO.
Side view of the padded heel and some cute butterflies.
Rachel needs to wear special seamless socks in her AFO's to prevent pressure sores from wrinkled up socks or toe seams. Her insurance covered 3 pair. I saw on the back of the box that you can order them in different colors.
I didn't get a close of a view of the back of the box as I would have liked to. It has sizing guidelines for AFO and KAFO wearers. The company's website is www.knitrite.com.
Above is the wearing guidelines for beginning to wear AFO's. This guideline helps you identify problem (pressure) areas before they become a problem. Due to my work schedule we are starting out on day 1 tonight.

After receiving the AFO's we headed upstairs to see Rachel's ortho doc. I expressed my concerns regarding having only night AFO's. I asked what the plan was for her feet due to her standing and attempting to take steps. He then ordered a pair of daytime AFO's to be made. We headed back downstairs to Hanger and Rachel was fitted for her daytime AFO's. This pair will take 2-3 weeks to make and will have the same butterfly pattern.

Rachel climbed our flight of stairs two times in a row yesterday. The second time she seamed to have picked up some speed.

Our Brady Steps shirt came in the mail on Saturday. I love it! So does Breanne who stated she was going to wear it to her middle school to help support  Brady. So sweet!

Breanne and Rachel sharing some sister time.

Tuesday, March 12, 2013

"Good Day" all around and swim class #2

Rachel's sister Alicia has been lightly tapping Rachel on the cheek and saying "Good Day" in a silly accented voice. Rumor has it she saw this on a episode of Wizards of Waverly Place. I have found this to actually be slightly annoying and last night after swimming at the Y I asked Alicia not to do it anymore. Who says sisters do not have pacts? I am positive Rachel was listening intently while I was talking to Alicia about it because all day today Rachel kept saying "Good Day!" Needless to say when Alicia returned home from school today she was delighted that Rachel decided to copy her. The girls were right though- today was a "Good Day" for Rachel. (She turned 19 months yesterday)

Rachel was re-evaluated for cognitive delays today. She passed with flying colors! No cognitive delays here! She is right on target for her age group not taking into account her prematurity. For us spina bifida parents this is great because there are medical professionals out there that tell newly diagnosed parents that children with spina bifida have mental delays. In all of the spina bifida families we have come to known this is so far from the truth! We were fortunate to have never been told that spina bifida myth by any of the medical professionals that cared for us- not everyone is and that is sad.

Today I was talking with Rachel about animals and asked her about ducks. She then went over to her toy area and handed me her box of baby flashcards that contain a duck picture. Then before her swim lesson was to begin- Rachel and I walked in the Lazy River at the Y. When we got to the one area she pointed and said "Breanne slide" indicating where the end of the water slide was. She loves to find her sisters in the inner tubes floating along after they go down the slide.

Rachel has climbed the first half of our stairs two times this week! This is 7 steps in a row followed by a landing then 7 more steps to the loft and bedrooms. I think she was most motivated by her sisters' items that needed to be put away. The stairs are now clutter-free and awaiting more action from Rachel. Lots of climbing on things this week- work those knees Rachel!She has happily figured out how to climb inside her pink little tykes car. This is alittle more challenging due to the height of the car.

Ignore the plumber butt imitation- Rachel stood up all by herself today. She first pulled up with the sides and tops of her feet tucked underneath then she lifted one knee up at a time and put her feet into correct position. This is huge for Rachel. At the end of last week's physical therapy session she was only standing up for a few seconds at a time- today she stood up for a few minutes without needing her knee immobilizers to stabilize her. On the bright side she is going to receive physical therapy once a week now.She had been only receiving physical therapy once every two weeks from October (when she started therapy) up until her last surgery in January.

Rachel is a good little tooth brusher! We have 4 teeth on top in the front and 2 on the bottom in front plus she has 2 molars that have come in the back.

Tonight we had our second swim lesson. The class began with the babies reaching for toys in the water and "digging" with their hands in the water. Next we tried to blow bubbles in the water.Rachel did it about 4 times then went back to trying to catch the water toys. After blowing bubbles we sang Happy and You Know It doing motions in the water with the babies. We then placed the babies with their backs on our chest and they had to kick the toys in the water before placing them back into the toy bin. Breanne and Alicia had joined in the swim lesson and helped round up toys for the babies. Rachel actually put the toys away this time. We then placed the babies on the side of the pool like last week and did "1,2,3 Go" before lifting them back into the water. Rachel now says "go". The lesson ended with the babies pretending to be motorboats. To be a motorboat you would place the baby facing you and gently ease them onto their backs with part of the back of their heads in the water and move them in a swaying fashion in a circle. All of the babies seemed to like this. I can see the progress she has made in only 2 swim lessons. She "digs" and kicks without being told to and I truly believe the water resistance is helping to strengthen her body.

Rachel's AFO's are ready. We have an appointment tomorrow to get them. Pictures to follow.

Wednesday, March 6, 2013

Swim Lessons Class 1

Rachel had her first swim lesson yesterday at our local YMCA. She is in a small class with just 2 other boys. Class one is all about getting used to the water. We began by singing a song about "Who came to swim today" and introduced our child's name while bouncing them up and down in the water. Next we sang and did motions in the water with our hands to the "Wheels on the Bus". Rachel's favorite part of the lesson is when all the little pool toys were dumped in the water. During this she had to be horizontal in the water and reach forward for the toys. After grabbing a toy she was then put back into a vertical position in the water and repeated until she had more than her fill of toys. She was fond of the little rubber duckies and would hug them and put them up to my lips to give them kisses. Next the little ones were placed sitting up on the side of the pool and we would count 1,2,3 Go and then lift them into the pool- with doing this we are teaching them they need to wait before getting into the water. We did another song (I forgot what it was) while placing our baby's back onto our chest and encouraging them to kick the water. Rachel was not so cooperative during this part. She just wanted to be on her tummy in the water catching toys. While she was on her tummy though she did kick and was putting her face in the water trying to blow bubbles. The swim lesson was ended by having all the babies help place the toys back into the toy box. Rachel had other ideas on this one- she wouldn't put her toys away and would try to take more out of the box. Sigh! Maybe the Easter Bunny will bring her some rubber duckies (she doesn't have any). I didn't get any pictures of the swim lesson- kind of hard to be the camera man and be in the pool with Rachel at the same time.

Alicia and Rachel playing before leaving for swim lessons. Alicia also had her first swim class. She was mad that she had to go into the Family Adventure pool with the "little" kids but I liked it because we were able to watch her from a distance without her knowing. She did well and I think she will be swimming on her own in no time. I know Alicia gets frustrated easily when it comes to athletic items because it is harder for her and for her older sister Breanne it all comes naturally with ease. Makes me think of the Brady Bunch "Marcia, Marcia, Marcia".
Rachel practicing kicking while waiting for the rest of us to get ready.
Posing for the camera. She understands what putting her swim suit on means. Once we put her other clothes on top she was banging on the sun room door to leave. Too cute!

Tuesday, March 5, 2013

Big Steps and Standing

Rachel and her mama!
Rachel has been back working hard in physical therapy since her nonweight baring status had been removed. She has cute pink baby knee immobilizers to help stabilize her legs while standing. After this last set of casts her legs are weak and remind me of cooked spaghetti noodles- her knees like to buckle.She is sitting on the Playschool Bounce N Ride. It makes silly sounds when she tries to sit up and down on it. One of the tricks we do is to roll it forward and it pulls Rachel into a standing position. Another trick is she stands with assistance in front of it and holds onto the handle bar and pushes it back and forth in front of herself. Both moves help to strengthen her hip muscles.
Rachel has a hard time pulling her feet under herself into the correct position for standing. She is working on saying "help up". When assisted up to stand she does a pretty good job keeping herself up. She moves her booty up and down and bounces on her legs. With her physical therapist holding her  hands Rachel was able to take some big wobbly baby steps. It was great to see and Rachel squealed with happiness when she did it.
Another view of the pink baby immobilizers.

Rachel working on her computer. As you can see from her pictures she has both the Leapfrog and Vtech baby laptops. She is crazy about baby laptops and keyboards. I was excited to find the Vtech one in excellent condition at the Goodwill for $3. What a bargain and she loves it! For her age group 18 months I highly recommend the Leapfrog one. I guess I shouldn't be too surprised by the laptop love giving her Daddy's and Grandma's history. The thing I love about them is she gets absorbed by checking them out and doesn't realize she doing her physical therapy at the same time.
Two of her other favorite things- Elly and her car. Rachel will close the door on the car when you try to take her back out of it. Love it! We push her around the house in it while we are waiting for warmer weather. I like to play the Low Rider song for her when we are going around the house.

Rachel also says "Thank you Auntie JoJo for watching me!"

Tonight Rachel is starting her baby "shrimp" swim lessons. So excited! Pictures to come if they allow us to take any.

Pressure Sores from Casts

Rachel had pressure sore develop on the tops of her feet from her last set of casts. It took about 2 days after the cast removal for the sores to fully rear their ugly heads.

This is what the right foot looked liked. The dark purple area then blistered up and opened into a stage 2 pressure sore.

Her left foot fortunately remained a stage 1 pressure sore and has not opened up.
This is Rachel's right foot with a stage two pressure sore. We are going on almost 2 weeks and it is definitely a slow healing process. Because of her compromised circulation from the spina bifida/clubbed feet combo I think the healing is going to be similar to someone with a diabetic ulcer.
Rachel can feel the sore on right foot and will pull her leg and foot away as soon as it appears you are going to look at it. Poor babe!