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.

Upcoming Surgery for Annalise

This coming Wednesday, September 5th, Annalise will have her first surgery and hospital stay.  Up until a few days ago when we met with the orthopedic doctor, we were planning on just an achillotenotomy which would be an outpatient surgery and only leave her with boot casts for 6 weeks.  However, as we, her physical therapist, and her physical medicine doctor feared, her adductors have also become so tight that she will need an adductor tenotomy as well.  This will require an overnight stay and she will be in a cast going from her hips to her feet and separated with a bar like this one      

that Bryce wore for 7 weeks when he had the same surgery done almost 2 years ago.  I am seriously not looking forward to going through this again!  I think the time in the casts will be especially hard for Annalise because she is still mobile...and she LOVES her bubble baths.  6-8 weeks without walking or taking a bath...she is not going to be a very happy camper!  We are really hoping that this surgery will release the tightness and pain that she has in her legs and hips and ankles.  We are also very hopeful that when the casts come off, Annalise will be able to walk a little easier and with less scissoring and pain than she has now.

Ryder and The Other Side of The Ryan House

I have written many times about how wonderful the Ryan House  has been for our family.  It is a place of respite where doctors, nurses, child life specialists, and many volunteers tend to the medical needs of Bryce and Annalise, and to the mental and emotional needs of our entire family.  I love that place and am so thankful to Ryan and his parents for opening the Ryan House here in Phoenix.  

The Ryan House is also a place where children can go to receive end of life care when that is what is needed.  The staff there provides support to the child and their family as the child moves from this life to the next.  It is a private time for them.  The other families staying at the Ryan House are not involved.  However, there have been two different times (that I know of) when we have been at the Ryan House while a family has said their final good-bye to their child.  Those times have brought many different emotions to me.  Neither of those families did we know well, one, not at all, and yet I felt a sorrow for them at the pain they were going through.  At the same time I felt joy for the child who was now able to run, laugh, talk, and play like other children, although I am sure they miss their earthly family as well.  One of these passings occurred while I was sleeping, but the other was in the middle of the day and although the staff does their best to keep other families from knowing what is happening, I knew what was going on.  I could feel it.  The veil between this life and the next is so thin.  I was not even in the room and I knew that there were messengers from Heaven who had come to welcome this young child back and to be with him throughout his new journey.  I could feel the spirit so strong!  

It was a wonderful feeling and yet at the same time a feeling of sadness, wonder, and even fear for the time that our family will be on the other side of that wall.  This past week, some very close friends of ours faced their time on the other side of the wall.  Denise, Les, Tyler, and Noah said their final goodbye to little Ryder last Wednesday morning.  They now know exactly how it feels  to be in that situation.  My heart aches for them.  I want to take their pain away, but I know that is not possible.  I do not have that power.  My only hope and comfort is that I know that in time, with the help of a loving Heavenly Father, they will feel peace again and that one day, they will be with Ryder again.  As long as we are on this earth, Ryder will always be missed and will be in our hearts forever!  We sure love you little man!

No News is Good News

Overall, that has been the case here.  Other than the horrible bout with croup at the beginning of the year, Bryce has been relatively healthy.  He even seems to have a little more strength than he has for a long time.    Yes, I am knocking on wood as I write this!  I am just so thankful that this has been the case.  The only thing we have been doing differently is that we have been feeding him more and more real food by way of a blended diet.  Although I have NO idea if this makes any difference or not, I like to believe it does! : )  I hope that he will continue to stay healthy as he begins his journey as a Kindergartner on Monday!

Yes, he will be starting kindergarten this coming Monday and Annalise will start preschool.  I am so not ready for school to start again!  I know they will both love it though, and that is what makes it all okay.  Annalise will be in the same preschool class as Bryce was for the last 2 and a half years.  It's nice to know the teachers already and  know that I like group there.  I was sad to hear that one of the aides there, Karen, has transferred to another school.  She was always so good with Bryce and even involved him in playing soccer with the other kids.

As for Annalise, she continues to move along...although a bit slower and more labored these days.  A couple of months ago, she and her oldest brother had Hand, Foot, and Mouth virus.  They ran a fever and had a mouth full of horribly painful cancer sore like blisters.  Although Annalise's symptoms seemed to clear up much faster than William's, she never has quite regained the strength that she had before she became sick.  For at least a month, I kept the hope that her regression was nothing more than lingering effects of the illness that she would soon "get better" from.  Unfortunately, it looks like that is not the case.  She is still able to walk in her walker, but for much shorter periods of time.  Her legs have become super tight again and she scissors constantly as she tries to move.  That along with her overall weakness makes it a challenge for her to move her little walker forward.  She will often walk for a very short distance and then say, "I just so tired, mommy.  I need you hold me."  We have had to use her wheelchair for her much more often when we are out.    It breaks my heart.  We are also having a harder time understanding her.  She slurs her words a bit more and has a hard time getting enough breath out to make the sounds come out at various times throughout the day.   Don't get me wrong though, she is still a little fighter and she continues to try hard to do everything she possibly can...by herself whenever possible!

I will be updating with some cute pictures and fun videos from our most recent trip very soon.  One funny thing Annalise did the other day:  we had just finished dinner and she was dunking the rest of her roll in her cup of water.  I cleared a few dishes and as I came back I saw her pour the cup of murky water right over her head.  As she sat there, hair covered in water and pieces of soggy roll, she said, "I take a bubble bath!"  She then picked up her peach slice that was sitting on her plate and running it across her hair, she said, "and now I combing my hair!"  She cracks me up!