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!

Latest Test Results

Yesterday we got the results from the SAMHD1 deletion testing that was done in Denver after our trip last April to see Dr. Vanderver.  It was normal.  So, two different tests looking for deletions have now come back normal, specialists in AGS aren't convinced AGS is what is causing our children's regression...the questions continue.  Could it really be that Bryce and Annalise are just carriers of this rare disorder and their symptoms are coming from something else?  It just seems so unlikely, but who knows.  Well, I know someone who knows, but for some reason, He just isn't telling right now so we will have to wait a little longer!  It is just so hard not knowing...not knowing what to research, what to look for, what to plan for, etc.  I'm really beginning to wonder if we will ever know.

Once I heard the results, I emailed Dr. Narayanan and let him know.  He said that he is still waiting on results of the genome sequencing and will let us know as soon as he hears anything.  He also asked how Bryce and Annalise are doing.  Overall, they are doing pretty well.  Bryce has been having some issues with croup and his breathing, but nothing too serious (meaning we haven't ended up in the hospital) for now.  We are hoping to keep it that way!

Annalise continues to heal.  She finally slept through the night last night without pain medicine!  That is a huge step in my book!  She still asks me to take her boots off, but she is learning how to get what she needs/wants without the ability to move around.  She is a trouper!  Her eating, or lack of, and her speech have us pretty concerned at this point.  It is just so strange, it is like she has almost no appetite at all.  She will eat some, but only when we distract her with something else and we feed her.  It will take up to 45 minutes sometimes to get a small amount of food into her.  She is still drinking okay, but is not getting nearly enough liquid into her. It's kind of scary.

She has also become much more difficult to understand.  She still talks up a storm, but more and more she is slurring her words and we are all finding it hard to understand a lot of what she says.  It is the worst when she is tired.  She gets really frustrated when we can't understand.  She has begun using signs a lot more lately.  I need to get back into teaching/learning more of those so that she can get her message across a little easier.  I'm still hoping and praying that the medication she was on after her surgery is to blame for some of this change and that she will gain it back soon.

Oct. 30th will be a great day!  That is the day Annalise's boots will come off.  We are all looking forward to that day!

I Believe in You!

My son, Jacob, was just watching a Pokeman video and at the end this song came on. It made me think of so many of you...my friends, my family, my Leukodystrophy family, my church family, all of you who support us even though we have never met, and my Father in Heaven. I had to look it up and post it here for all of you to enjoy.  What a great song. Who would have thought something from Pokeman would ever touch my heart! :)  Okay, back to work.  Thank you all!

Trip to Tucson

Annalise continues to recover.  We came home Friday evening.  The first night home was great.  She even slept through the night.  However, the nights since then have been a different story.  She does pretty well during the day as long is she is on the pain medicine, but at night, the muscle spasms seem to continue to come right through the meds.  She doesn't want me to leave her side, so we are spending some quality time together reading, coloring, and playing with toys that she got from my wonderful friend Bobbie and my Mom!  If you want to read a more thorough description of how she is doing and see pictures, feel free to check out our family blog.  I will be posting more there as I get some time.

Today, Annalise will be spending the day with Denise, one of our respite workers.  Hopefully she will do well.  I will be heading to Tucson with Bryce to meet with Marsha Dunn Klein to learn more about what type of blended diet will work for Bryce.  Laura Hinners, Bryce and Annalise's speech therapist, will be going with us.   We will be meeting with a nutritionist as well.  Although I wish I did not have to leave Annalise here, I am really looking forward to meeting with Marsha and learning from her.  It is a great opportunity!

Annalise's First Surgery and Hospital Stay

Wednesday morning Annalise and I headed up to Phoenix Children's Hospital nice and early for her surgery.  They had called the night before and asked us to come 2 hours earlier than we had planned, so I made a few arrangements and got to PCH by 8:30

 Our home away from home for a couple of days. 

All ready to go see the doctor 

Annalise was excited to get her "bracelet" that had two princess stickers on it. 

With Dr. Duck.  They gave her this animal when we checked in.  The man who gave it to her said it was a goose.  She said, "It's not a goose.  It's a duck!"  Dr. Duck 

 Wearing pants for the last time in 6-8 weeks.

I had to take pictures of her cute, soft, little legs before they got covered with hard heavy casts. 

 We then spent time checking out all the toys.  

Annalise's new friend, a very sweet little girl who was waiting for her surgery also.  

 They played Candy Land and then tea party together.   So cute!

Once they called Jersey back, Annalise played with just about every other toy there was. 

We actually ended up having quite a while to play with toys because Dr. Shrader had two ER surgeries that came up.  Finally at about noon, only a half an hour before our originally scheduled time, the nurse came to get her.

 She had her dog (Mya) and her duck ready to go with her.  This was the hardest part for me...always is.  I walk with Annalise and the nurse to a door.  Then I give Annalise a kiss and they head one way and I head the other.  

The surgery lasted just over an hour.  She did great.  She woke up for about 2 seconds in the recovery room  

and before long they had us up in her room.  Room 8147.  This is the first time that we have been in the new part of the hospital.  It is so much nicer than the times we have stayed with Bryce.  The rooms are much bigger, we have the room to ourselves, and there is a bathroom and shower that I can use as well.  So nice not to have to walk down the hall every time nature calls!

The view from our room is also pretty nice.  

Annalise slept until about 3 pm.  Then woke up and was ready to play.

Aunt Sheri came and brought Annalise a balloon and a book.  Annalise enjoyed playing peek-a-boo with Aunt Sheri. 

Annalise also loves holding on to the balloon and then letting it go and watching it go up to the ceiling. 

Also, my friend Ann stopped by to say hello.  I met Ann and her family one time when we were staying at the Ryan House.  She is here at the hospital with her son Jack.  She is the one who I first heard refer to this place as hotel PCH.  I like that!  When she came by, she gave me this necklace.   I love it!  

After work, John came by to stay with Annalise so that I could go to Ryder's End of Life Celebration.  It was beautiful.  Yesterday would have been Ryder's 3rd birthday.  It posted sideways here, but this is the program they had there.  Denise wrote the poem.  While at the celebration I saw many mutual friends.  It was a lovely night and I am glad that I was able to get away for a bit and be with Les, Denise, and their friends and family to honor such an incredible little boy!  

 While I was away, Annalise colored with her Dad.  

Also, her pain medicine began wearing off and she began having some pretty bad muscle spasms.  She threw up twice, once with John and once with me.   

Annalise's boots.  She choose pink and the lady who casted her decided to add the purple around the bar.   

 She keeps telling me that she wants her boots off!  It is so hard to see her so uncomfortable.  

 My poor baby had a really rough night the first night.  They ended up having to give her Morphine in addition to all the other pain medicine she was already on.  

It did help though and finally she was able to get some rest.  

It is now about 3am, Friday morning.  Annalise woke up about an hour ago in some pain, but other than that she has had a pretty good night.  Luckily they are keeping on top of giving her the pain meds and that is helping a lot.  I really like the night nurse tonight.  Not trying to be mean, but in my opinion she is much better than the one we had last night.  There is definitely a difference between nurses!

After getting Annalise settled back to sleep, I have not been able to get back to sleep, so I figured I would get up and finish off this post...then hopefully get a little more sleep before the sun and my daughter wake up.

Annalise woke up yesterday morning around 9 o'clock.  I figured she would take a nap during the day, but she ended up staying awake until almost 8:30 last night.  She had a few rough/painful moments through the day, but overall she seemed pretty comfortable...relatively speaking.  

Regression is always a concern with these kiddos because of the Leukodystrophy.  The only thing so far that I have noticed with her since her surgery is her speaking.  She is still babbling away just as much as she was before, but I am really having a hard time understanding her.  I hope and pray that it is just because she is on medication and that soon she will be back to her normal.  

 Watching some t.v.  I think that keeping this girl entertained is going to be the toughest part of the next few weeks.  She doesn't really like to sit and watch t.v. or movies a whole lot, so I am going to need to get a little creative.  Today we spent time reading books, coloring, and playing with some  toys.  

 We even got a few smiles out of her today.  

 She also discovered how to raise and lower her bed.  

She thought that was pretty entertaining.   

She also took lots of pictures with my phone.  Most were pictures of the t.v. 

Our view at night.

We were hoping to go home on Thursday, but they decided to keep her one more night to make sure she made it through the night without the extra pain medication or any more throwing up.  So far, she has done well, so hopefully we will be heading home later today.  I have friends who have had to spend many days/nights at a time in the hospital with their children.  I admire them and their strength so much.  We've only been here two days and I'm already going stir crazy.  Thanks to everyone for the visits, texts, prayers, and well wishes.  We have felt your love and thank you for that!   The prayers have been especially appreciated!  The strength and comfort that comes when so many people are praying for you is impossible to describe.  It has been a huge help to my baby girl and this very anxious mom! 

Families of children and young adults with disabilities were asked what they might have told themselves on the day their child was diagnosed. This is what they said.