Cooking the Noodle Legs

Each day since Rachel had her purple people eater casts removed-she has made her noodle legs work hard. No surprise-she is back to refusing to use her walker determined to do it on her own.

Hard work, determination are not only beliefs from the Biggest Loser but they are Rachel's code also.

The bottoms of her cast shoes are like us ladies wearing wedges. Besides working weakened leg muscles she is working double time on her ability to balance. Hard work determination pay off- she is standing longer and able to stand herself up frequently without needing to hold onto anything.

Rachel is at 3-5 independent steps. Keep up the hard work and determination Rachel! I am so proud of her and love her happy look when she knows how good she is doing.

Rachel and the older girls enjoying some sister time making s'mores. I am curious as to how many marshmallows Bre was trying to roast at once. 

Rachel enjoyed playing in the ballpit when Gia visited today. The ballpit in Rachel's room was one of the first places she demanded to play in after the long leg casts were removed. She has a slide that she climbs up and slides down into the ballpit. 

Gone are the Purple People Eater Casts

Today we travelled down to Shriners Hospital in Chicago to have Rachel's monsterous purple long leg casts removed. She is approximately 6 weeks post op.

Rachel has her purple sunglasses on for the ride.

By the end of the 4 weeks with the purple people eater casts Rachel had worn down both of the heel sections and the fiberglass on the left foot was starting to loosen. We used minion duct tape to remedy the loosen piece of fiberglass.

Rachel insisted on staying in my arms while the casts were bivalved for removal. She cried from the sound of the cast saw even with little ear muffs on to buffer the sound. I tried to remind her that it sounds just like the mixer when we are making cookies. We went over the ingredient list for chocolate chip cookies- flour, baking soda, salt, butter, eggs, sugar, brown sugar, vanilla, chocolate chips and my secret ingredient (2 tbs vanilla wafer butter from Williams-Sonoma). This helped but she calmed down most when her dad came to sit closer to us. Nothing like a good dad to chase away the scary stuff.

Fair warning some of the following pictures may appear graphic to some and to those who become weak kneed at the sight of medical situations.

Left foot- yes that pin is going right down Rachel's big toe.

Right foot - pin is going down the top of Rachel's foot in between her big toe and 2nd toe.

The casts are off. 

Wow! As graphic as these may appear- look how wonderfully straight they look!

Left foot with pin.

Right foot with pin.

Dr.Altiok removed the pins from Rachel's feet. She cried shortly with the removal of each pin. 

After the pins were removed Rachel had small pressure dressings applied. She was then fitted for new AFOs. I didn't take any pictures of that process but describe it in an older blog entry. Rachel picked out the color red for her short leg walking casts. She will have this set of casts on for 2 weeks while her AFOs are being made. Rachel was also given a pair of knee immobilizers to place on at night to help stretch her knees. 

Rachel's red short leg casts with cast shoes. In the picture she has stockinet over her knees and thighs to help prevent her from scratching at the dry skin underneath. I applied a mixture of regular Johnson's baby lotion and cortisone cream on them when we arrived home. This combo seemed to help Rachel a lot. 

Not the best picture as the room was quite dark but look who was already cruising along with her walker. I caught her standing back up on her own and trying to take independent steps. Rachel's legs are like noodles right now from being immobile. I have faith that she is going to work hard and be on the go again.

Rachel was VERY happy to be standing again. Much love and big thank you's to Dr. Altiok and his team!

On the Final Countdown for the Purple People Eater Casts

Tomorrow will be the day we have been counting down for since Rachel's surgery last month- the removal of her purple long leg casts. We have all gotten alittle stronger from carrying Rachel around with the added weight of the casts. We have gotten scratch marks on our arms from them, have had our toes crunched by Rachel lifting her feet up and dropping them down on our toes and I have gotten kicked in the face by them on occasion while changing Rachel. She has done really well with them with the excepetion of this past week. This week she has been caught several times trying to stand up and trying to cruise along the couch with them. 

We started letting Rachel know about a week ago regarding tomorrow's appointment. She knows the doctor is going to remove them and she will get new ones on. 

Her legs have grown so much her feet touch the ground while she is riding on her pony.

Rachel has inherited Alicia's fiesty side. She really loves pointing that finger and saying "no way!"

The little cowgirl visited Lori's farm. She wasn't as brave when the cows came closer.

Rachel held onto Alicia tightly.

Made for a second fun picture!

We took the girls on a picnic at Little Cedar Lake. The older girls got to spend sometime in the lake while Rachel played with Steve on the playground equipment.

Then the older girls invaded.

Rachel loves when Gia visits. She talks to Gia, shows Gia her toys, reads books to Gia, says "Gia what's wrong?" when Gia cries, she helps Gia with her pacifer and bottle (after sampling them herself). Gia is 3 months old and so sweet and smiley. 

Rachel swiped my Starbucks.

Pretty happy about swiping mom's drink.

Rainy Summer

We have had several rainy days and nights since school let out for summer break. This has made going outdoors with full leg casts off limits. This past Monday we went to Meg's softball game. Rachel likes cheering Meg on. I snuck away for a short time with Rachel to the play equipment.

Rachel scooted herself up and into the tunnel.

She loved being on the play equipment even with casts on.

Rachel and I on the swings. Too bad the special needs swing was broken at this park but it was clear to see why. There were a group of children playing that appeared to be in the 9-10 yr old range that were running and then jumping into the swing and climbing it to sit on top of the park swing set. With visions of broken arms from falling in the near future Rachel and I departed back to the softball diamond.

Meg and her team played a great game and won against the other team.

We went to Bartz's party supply and Rachel found a cowboy hat. Yes I had hidden that Cars sweatshirt but she somehow managed to find it. Rachel has a current obsession with wearing Cars themed clothing. 

Alicia tried on masquerade masks for an upcoming masquerade themed party that her and Breanne will be attending. 

The girls spent an afternoon on one of my friends' farm. Her goats are so cute!!!

The girls wanted to bring MooMoo home and keep her in the backyard. I had a hard time with MooMoo's need for a Kleenex. I do not think the neighbors would enjoy MooMoo's cowpies.

First Post Op Cast Change at Shriners

Rachel was sedated yesterday for her first post op cast change. Her cast change occurred in the OR partly due to her age (wiggling, squirming, and toddler stubbornness could occur - which would make it difficult for the doctors to get her feet positioned well) and partly for the possibility of needing a surgical revision done. 

Getting a cuddle from her older sister Breanne before her procedure started.

Double checking her ID band was correct. When the preop nurse came close to Rachel for an assessment Rachel keep her mouth covered with her hand in case the nurse was bringing her some versed. Rachel throws up from the taste of versed (as evidenced by me being thrown up on the last two times she received it.) Instead of receiving oral versed we opted for an IM injection of it into Rachel's upper right thigh. She definetly has sensation there as she gave out a pretty good cry when she received it. 

A few moments later and the relaxation started to kick in. 

Ta da a new pair of purple casts. Rachel was blessed that Dr. Altiok and Dr. Andrew did a wonderful job on her surgery and she did not need any revisions and her incisions looked well. Our family was as delighted by this as I am sure her rockstar doctors were. While Rachel appears like a vision of peacefulness in the above picture I can attest to the fact that a few moments prior she was not.

When Rachel was woken up in the recovery room she immediately ripped out her IV, began pulling off all of the vital sign equipment, put her Tinkerbell dress back on (it was in the crib with her), tryed climbing out of the crib and demanding to walk out. Wow!!!! She was so angry I had to go back into the recovery area early with her. She refused to get back into the crib and would only lay in her wagon. She kept her temper tantrum up for a good 45 minutes before falling into a nice slumber. Rachel was all smiles and sweetness again when she woke up. Thank God for that or it would have been a very long ride home. On a very cool note Rachel's post procedure nurse on the inpatient unit also has spina bifida and was wonderful to talk with. 

Ronald McDonald House Fun

We stayed at the Ronald McDonald House during Rachel's surgery stay at Shriners and last night in preparation for today's cast change. The one we stayed at is located on the VA grounds in Hines. Wonderful staff and wonderful atosmphere for families needing to stay there. 

Play room fun! 

More play room fun! The play room is enclosed and located right off the dining room and kitchen. 

Guess which button was Rachel's favorite elevator button to push. Reminds me a lot of her older sister  Breanne.

Secret teddy bear room on the 4th floor. There is a spiral staircase that leads to the secret room- the staircase is hidden by closet doors. 

I am not sure who loved this room more-Rachel or me?

So sweet!

We found a giant Stitch.

Stitch was hungry.

Rachel tried to help but I think she was helping Stitch get my toes.

Looking out the window.

Love this picture of Rachel! When you are that cute you can get away with cheating when playing pool.