The Casts Come Off!

October 30, 2012

After 7 weeks and 6 days, the time has finally arrived!  The day that the casts, aka boots, come off!

We got up early and made our way to the CRS orthopedic clinic.  While we waited in the waiting room, I met a lady who was there with 3 of her children.  Two of them were in power wheelchairs and one in a regular push wheelchair.   As we spoke, I found out that these were 3 of her 6 children.  5 of her children are in wheelchairs, 1 of the five is tube fed, and they will be adopting 2 year old twin boys, one who is blind, in the coming months.  The first three of these children are their biological children, the other 5 have come to them through foster parenting/adopting.  It was so neat to talk with her for a few minutes and learn how each of these children have come into her life.  Caring for these special children, who are often just passed by, is definitely one of this sweet lady's missions while on this earth.  What a great person.  I wish I had been able to talk with her longer.  I'm sure she has a lot to tell!

Once we got into the casting room, Annalise kept saying, " my boots come off.  The doctor take my boots off and I have a bubble bath in the big mommy bath tub." 

 The casts being cut off.

Annalise did really well, no tears at all until he began cutting on the second one.  It was just too much and the tears began to flow.  This wonderful child life specialist whom we have met and gotten to know over the past couple of months came right over to Annalise and showed her some games on the iPad.  It was a great distraction! 

While the tech was taking off the casts, I was told that Annalise may have some muscle spasms due to her high tone and having the legs in one place for so long.  The tech looked up and said, "she will have some for sure.  I can already feel it in her legs".  Poor girl.  Any time she tried to bend her legs, they would hurt her which always led to tears.   

The casts are off.  Just waiting to be cleaned up a little and for recasting for the AFOs.  She wasn't so sure about the casting.  She kept telling me that she did not want more boots.  She calmed down once she saw that they would be taking them right back off! 

Home, happy, and cast free!   

Annalise has begun twirling her bangs.  She does this a lot when she is tired or needing extra comfort. 

The whole way home, Annalise kept talking about her bubble bath in the mommy bathtub.  She was so happy that her boots were off and she was going to be getting a bubble bath.

However, once we got home, I ran some bath water full of lots of bubbles.  I put her in, but she instantly started freaking out a little and crying that she wanted to get out.  I made sure the water temperature and everything was fine.   I'm not sure why she did not want to be in the bathtub. I'm guessing that the water just felt really weird on her bare legs and that it was hurting.  I got her out and after a few cuddles, I handed her over to Sarah who was here to care for her while I took William and Jacob to the dermatologist.  I gave her some pain medicine and headed off to pick up the boys.  It was hard to leave her!

I guess all afternoon, Annalise wanted her legs to be covered with a towel or blanket.  She did not want to look at them and kept saying that she didn't like them and that they have owies.  I guess 8 weeks in a cast is a long time.  Being out of them is going to take some getting used to.  Hopefully she will get used to that soon and be able to enjoy her bubble baths again!

Answers?

I found out tonight that Bryce's entire genome, which has been sequenced, was one of the 10 that were picked up from San Diego this week and brought here to TGen in Phoenix to be analyzed.  What that means is that within 6 months, we could have some answers!  This is what we have been waiting for!

I have been asked to be on the parent advisory committee for the new Center for Rare Childhood Disorders.  Tonight Denise Hauer and I attended the first meeting. Here I met and talked with the scientists who will be doing the analyzing.  I'll keep you posted!

Watch this amazing video to see what our wonderful neurologist, Dr. Narayanan, and TGen are doing to help children with rare diseases.  I am so excited to be a part of this team.



Today when Annalise was eating her lunch, I handed her cup of milk to her and ask if she wanted a drink.  She instantly lifted her dress, stuck the straw to her belly, and said, "I'm drinking it from the tube in my tummy."

She then gave her butterfly a drink through his tummy as well. 

We are working hard to keep Annalise from needing a tube in her tummy, but if she ever does need one, she will know exactly how to use it!  

Without Them

We went to Schnepf Farms tonight with some friends.  We have gone to the Pumpkin and Chili party almost every year for the past 8 years.  I loved spending time with our friends, but tonight was tough for me as well.  Tonight was the first time in 8 years that our entire family was not there.  We left Bryce and Annalise home because we knew they could not handle the heat, they can't ride the rides, run around or even eat the food. They would not have enjoyed it.  That makes me sad.  I missed them the entire time.  I hated seeing other kids their ages running around and playing in the dirt, hay, and grass.  Usually it doesn't bother me so much, but tonight it did.  It just wasn't right without them.

Annalise dancing to the music at Schneph Farms October 2010.  

Moving Forward with a Blended Diet

I can't believe I haven't told you about this yet.  As I mentioned a few posts back, I was taking Bryce down to meet with Marsha Dunn Klein.  Well, we went and the visit was amazing!  We met with Marsha and Ellen, the nutritionist that works with her.  We talked for a couple of hours.  We found out all about doing a blended diet and set up a plan to get Bryce moving in that direction.  While we were there, Marsha even asked me to write up our story about feeding Bryce his "green love"  (green smoothies) and the difference it has already made in his health.  I still need to write that up!  She is planning to use our story in her pamphlet that they hand out at her lectures.  She lectures all over the world.

Marsha also told us that of all the places around the world where she teaches people about using a blended diet with tube fed kids, Phoenix has been the most difficult to get anyone to listen to her...as far as doctors and nutritionists.  They aren't even open to talking to her.  She said she believes it is because some parents up here have tried a blended diet on their own (because they do not get the support from the doctors here), their child has had problems or become more sick, and then they go back in to the GI doctor for help.  The doctors have seen these kids who have become anemic and had other problems and blame it on the blended diet.  She said that she really wanted to work with us so that we could be a success story and help the doctors here see that it is a good thing...if it is done correctly and with supervision.  I am all about that.  I have known all along that I did not want to go out on my own with this one.  She of course fell in love with Bryce and seems very excited to help us make this work.  I came home very excited to start the process.

The first hurdle we had was the appointment with our GI doctor.  I love the GI doctor that we have right now, but I knew that he was not thrilled about a blended diet when I first brought it up a few weeks ago.  It took him a while to even be okay with me feeding Bryce a green smoothie.  So, I wasn't sure how he would take the news that I was now also working with Marsha and her team, and that I will be working toward a blended diet for Bryce.

We went in to the appointment and Bryce had gained a bit of weight which was good.  Dr. McOmber checked him over and said that everything looked good.  We discussed the amounts of formula and water (and green smoothie) he is currently getting.  Then he began to talk about where we wanted to go as far as his feedings over the next few months until Bryce's next appointment.  That was the time to let him in on our little plan.  I told him that we had been down to see Marsha Dunn Klein and he instantly rolled his eyes.  I tried not to laugh, because that was pretty much the reaction I was expecting.  I said, "oh, not good, huh?"  Then he told me that it isn't that he has anything against her, but just that she is not a medical doctor and he thinks she often pushes too fast.  He said that he would have to show our plan to his nutritionist and make sure they think it is okay.  I assured him that I want to continue to work closely with him and the nutritionist...along with Marsha and her team.  I don't want to cut anyone out.  I want to do what is best for my son and keeping track of how he is doing in all areas is my number one concern.  I am totally aware that this may not work for Bryce and if that is the case, we will go back to what we have been doing for the past 3 years...but I have to try!

Dr. McOmber still seemed concerned, so I showed him the plan for our first step of transitioning Bryce to a BD.  He looked it over, and started to get excited.  See, our first step is to just get Bryce off of his night  time feedings.  To create more of a normal "eating" schedule for our 5 year old son.  We didn't mess with the number of calories or add any more real food to the plan...yet.  He totally changed his attitude about it and said that it sounds like a great idea and at this point he doesn't even need to talk to the nutritionist about it.  He will want to once we start adding food in, but for now, he was very pleased with what we are doing.  That we are taking it slowly.  He wished us luck, told us if we had any questions to call.  And then he said something that made my day.  He said to tell Marsha that if she ever wanted to talk to him about what we are doing, or to ask any questions, to just give him a call!  YES!!!  Success!

I was so excited!  I meant to call Marsha right away, but still haven't.  We go back down to meet with them again a week from Friday.  I will take Dr. McOmber's contact information and let her know that he is now on board with what we are doing and very much wants to be a part of it!

It has not been easy changing Bryce's feeding schedule around.  It has had to be done slowly and I had to watch for signs of intolerance or aspiration.  He has had a couple of challenges along the way, but for the most part, he is handling the change well.  He is now given 4 "drinks" of water a day that take about 10-15 minutes each time, one serving of "green love" and 4 "meals" through the day which take about 40 minutes to get into him, plus the prep time.  There were a few days that I was very overwhelmed by it all, but things have smoothed out a bit and we are finding our flow.  Having him on Fall break and at home has helped a lot.  Hopefully I will be able to get his Para at school on board pretty quickly once he is back.  I'm not worried about that though...they are great at his school!  It's a lot of work, but I honestly think that it will all be worth it for him.

I have more good news from today, but it is late.  It will have to wait until tomorrow.  Thanks for reading and thank you always for your prayers!  Good night for now!