1 Corinthians 13:13

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

Thursday, February 21, 2013

Cast Compromises and Crabbies

Yesterday Rachel had a long day. It started around 5:45 am when she heard her daddy coughing and was unable to fall back asleep after. Then Lucky trotted up and down the stairs and her sisters were up and down the stairs while getting ready for school. Needless to say by the time we arrived at her orthopedic appointment at 10:30 she was already alittle crabby and did not nap in the car on the way to the appointment.After the orthopedic appointment Rachel was to be seen by Hanger to be fitted for braces.

Rachel was set up in the cast clinic. We forgot paci but the cast tech got her a new one and two different music boxes before she started removing Rachel's casts. We were calling it "imposter paci" as it was not the round jellybean shaped one she was use to. She kept removing paci from her mouth and trying to tell me "it's not the right one". (Our goal was to wean off of paci after she recovered from this surgery-perfect timing). Rachel's casts were removed uneventfully- she only cried at the beginning when we tried to get her to lay down. The resident MD came and inspected her healing incisions and had removed her steri strips. Rachel's skin on her legs looked like dried out leather and was wrinkling in places. Her ortho MD then came and seen Rachel. He was not as happy with the progression of her incisions healing. He decided that he wanted to recast her for 10 more days to avoid any chance of breaking open the incisions.Heartbroken about the recasting we were sent downstairs to Hanger's office for brace fitting after the cast tech covered her incisions.

While in the waiting room at Hanger a little boy (I am guessing around 3 years old) came down the hallway with a yellow walker. He was struggling a bit and mainly tip toe walking. Rachel and I cheered him on as he came closer and told him he was doing a great job and that we were looking forward to when Rachel would get her first walker. The father had looked weary as he was following behind his son in the hallway pushing another child in a stroller. When the father registered what we were saying to his son his expression of weariness turned to pride. Keep up the good work little man!

We had a great time at Hanger (minus each time Rachel looked at the cast saw and cried-this is why I can not use a blender in the same room as her- she associates the sounds) Rachel was fitted for bilateral AFO's. The orthotist had been with Hanger forever as his office staff described but you could tell this was someone whose heart was in their job and truely enjoyed helping children. The first thing he did was wrap Rachel's ankles with 3 inch wide plastic wrap over the dressings for her incisions. Then he placed stockinette over that. On the stockinette he marked a few boney landmarks for fitting purposes. Next Rachel had a leather strip placed on the front center of her foot and shin. He casted about 3/4 of a roll of fiberglass over the leather strip to form the mold for her AFO's. Rachel's ortho MD had ordered that her feet be kept in a 10 degree dorsiflexion. Rachel was not as impressed when he kept her in the dorsiflexion for the mold. The fiberglass was then removed using a cast saw along the leather strip. The purpose of the leather strip is to prevent cast saw burns from the thin layer of fiberglass. The cast saw uses vibration to cut through fiberglass and plaster- if held in one place to long it will cause a burn but does not cut the skin. After the fiberglass mold was removed he stapled the cut edges of the fiberglass together. This was done for both feet. We were able to pick out a pattern for Rachel's AFO's. We chose a light purple with butterflies on it. Symbolic of the butterfly wings helping Rachel fly. It will take about 2 weeks for Rachel's AFO's to be done. Her ortho MD would like them worn everyday while she is awake. The orthotist then requested that we bring in 2-3 different pairs of shoes when her AFO's are ready. He told us to keep the tags on in case we need to return them. I then told him that Rachel has been in casts for so long that we do not know what her shoe size is and that she was going to be recasted upstairs He measured Rachel's feet. They are 4 inches long by 2 inches wide. He recommended to start with a shoe that measures 4.5 inches long after the insole is removed and then possibly the next size up. I heart this orthotist- he was great and he made me think of my father as they were about the same age.

On the way back upstairs to the ortho clinic I had a thought. Why couldn't Rachel just be splinted on the bottom with ace wraps keeping the splints in place? I am a nurse so I could do any wound and skin care that was needed and she could get a bath. Once back in the ortho clinic I requested to the cast tech to ask Rachel's ortho MD if we could do this instead. He came back and talked with me. I proposed my request and re-explained that I was a nurse and could do any skin/wound care and that Rachel really needed to be bathed. I was so delighted when he agreed! They still had Rachel's casts that were removed earlier. The cast techs then removed the old padding from the casts, repadded them and covered them with stockinette. They did this with both the tops and bottoms of the casts. We were going to use the bottoms unless we noticed that Rachel was trying to move to far out of position. If this were the case then the tops could be placed on and using ace wraps clam shelled together. She no longer needs to be nonweight bearing also- yeah!This was getting harder the last few days to keep her from standing.

Rachel had been very crabby after her appointment with Hanger ended up until she went to bed. I had medicated her with infant's tylenol as I think part of the crabbies were from discomfort to her legs and feet combined with lack of sleep.





Bottom of casts held in place with ace wraps.

Her poor skin! I love the positioning of her foot though!
More poor skin!
After bath and application of Cetaphil lotion. Her toes nails were also trimmed. Bath time did take away the crabbies temporarily. She has so happy to be in the bathtub she kept clapping and dancing.

Back of right foot- gives you a better idea of how deep her incisions were.
Back of left foot.
Both legs.

When Rachel went to bed she threw imposter paci out of her bed. She really did not like imposter paci and I am thinking the imposter is the way to go on weaning her off.









Sunday, February 17, 2013

Nothing is Going to Slow Me Down - Oh No!

I can hear that song playing in my mind while watching Rachel. As promised I was able to catch a few pictures and videos of her standing up in her casts. This is no easy feat as she has about a 50-60 degree bend in the knees of her cast. (Forgive Rachel's bedhead)


She is trying to clap for herself at the same time as standing in this picture.
Doing some deep squats to build up her thighs.
video
Standing with Peanut.
video
Standing up with Beanie.

I really love the how Rachel's big sisters help her and cheer her on. Breanne and Alicia you are the greatest big sisters ever!

Rachel checking out the snowflakes. Reminds me of the comparison to spina bifida- like snowflakes no two spina bifida cases are alike.
Rachel says "I am not to sure about this white stuff" She does say "outside snow" when she looks out the window. Dreaming of spring when we can say "outside flowers".



Saturday, February 16, 2013

Count down for cast removal

Five days and counting until Rachel's casts are removed! We are so excited for all of things she will be able to do again. Number one on the list is a good bath! Sponge bathes and trying to wash her hair without getting her casts wet has been a challenge. Number two will be every girl's dream - shoe shopping! Although the shopping maybe challenging depending on the bracing her orthopedic doc decides on.


                                                                     

I am in training mode for the upcoming spring/summer 5k season. I am planning on running with Rachel secured in her jogging stroller. We need to gear up with spina bifida awareness items to wear during our runs.Any suggestions?

                             



Tuesday, February 12, 2013

Love to Aunt Sue


Aunty Sue- Rachel says "Thank You" We love the shopping cart cover you sewed!We were so excited that we had to try it out today. Fits perfectly and Rachel loved not having a cold bum from sitting in a cold shopping cart.








                                Absolutely love it! Thank you so much!

2013 Children's Champion Club






Rachel received an invitation to join Children's Champion Club at Children's Hospital Milwaukee WI.We also signed up to share her story and for Rachel to become an ambassador for Children's Miracle Network Hospitals. I submitted her story and need to email them 2 pictures of Rachel.

Rachel is officially signed up for swimming lessons. They start next month and will be one night a week for 6-8 weeks. She will be in the shrimp class. I love the names for the different swim lesson groups.Time to stock up on little swimmers!


Tuesday, February 5, 2013

Unexpected cast change


Rachel's cast on her right leg did not look so good this morning. The area above her knee had caved in - resembles a hard boiled egg that was ready to be peeled.


The area below her right knee had split in half- leaving 2 different cast pieces.Above is the bottom view and the picture below is of the top view. This is the first time we have had any problems with Rachel's casts and she has been in many. She is a very busy girl trying to climb and pull herself up on things- someone forgot to tell her she has spina bifida ;)





We were fit in between patients at her ortho clinic and new casts were placed on. She has a layer of plaster casting covered by fiberglass and sparkles.






Monday, February 4, 2013

Cecilia is a beautiful young lady also facing the challenges of spina bifida. Please take a moment to view and support her page. Click on this text to view Ceci's page.

Post Op Appointment


Rachel's incision on her left foot - begins above her heel on the back of her leg (sorry she was too wiggly to get a picture of the back of her leg)- There is an area on the back of leg that is approximately the size of half of a dime that needs to continue to heal and fill in with healthy tissue. After the casts were off you could get a good picture of how deep the incisions had been.






                                  Rachel's stitches were removed and steri strips were placed.




Look at that positioning! While there is some post op swelling yet- I couldn't be more pleased with the positioning of Rachel's feet. Major improvement!!!!



Recasted for another two weeks. In two weeks at the cast removal appointment Hanger Prosthetics will be coming to fit Rachel for custom bracing of her orthopedic doc's choice. I am not sure what he is planning to go with. He was on vacation and we didn't get to see him today. Rachel is going to continue to be nonweight bearing on her feet until the new set of casts come off.

I also wanted to take this opportunity to thank all of the Moms and Dads in our Fetal Surgery for Spina Bifida group on Facebook. You all are the best support system a girl could ask for! Go Team Twice Born!!!
I am also interested in adding links from Rachel's blog onto others' blogs and facebook pages from families facing the challenges of spina bifida.