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!

Bryce and his Fish

Another look.  This little girl was also interested in hanging out with Bryce.  

Swimming with the Sharks

Annalise and Bryce have been out of school on Fall Break last week and this week.  They are missing school.  Annalise has been telling me she wants to go back to school and Bryce has said school bus on his communicator multiple times over the last couple of days.  I wish all the grades could be as fun as preschool and kindergarten!  

Since the older boys do not have Fall break until next week, I decided to take the little ones and do something fun with them.  Denise, our respite worker came along to help.  We decided to go the Sea Life Aquarium.  I hadn't ever been.  I found some discount tickets and off we went.  

Waiting for the aquarium to open.   

There is something very special about Bryce and sometimes something happens to prove that to me once again.   It happened with this fish at the aquarium.  This is a three section tank.  As we came up, this fish was rapidly swimming back and forth between all three sections.  There were kids all the way along the tank.  As we came up, he swam up and seemed to look right at Bryce.  He then turned and swam on down to the other end like he had been doing.  Then he came back.  Only this time he stayed.  He would swim a very short distance and then turn, come back to Bryce, hover for a bit and swim the short distance again.  I watched for quite a while as he did it.  I watched the fish and I watched Bryce.  I know it sounds weird, but I swear there was some kind of connection there, like they were communicating or something.  It went on for quite a while.  Other little kids were trying to get this fish's attention and he just kept "hanging out" with Bryce.  I watched for a while and then I got some video of it.  I will see if I can add that here a little later.  Odd, but very cool.  

This picture is a little dark, but in this area there was a big circle tank of fish all around the room.  Bryce loved it...Annalise was more interested in the little, green tables in the middle of the room. 

Feeding the stingrays.   

Bryce and Denise overlooking the stingray tank.   Bryce saw the stairs leading up here and really wanted to go up them.  He is like that with stairs.  Denise is such a good sport and carried him up so he could look over the edge.  

We went all the way through the aquarium and Bryce and Annalise just didn't want to leave.  Since we had an all day pass, we decided to go get some lunch and then go back through again.  While getting lunch, they noticed the carousel in the food court and of course wanted to ride.  So after lunch, we rode the carousel and then headed back to the aquarium.  The second time through Bryce's fish friend was sleeping up in the rocks so we didn't stay there long.  We did spend some time in the tide pool area where we got Bryce and Annalise out and let them touch the starfish and other animals in there.  Annalise loves water and did not want to leave that area.  Every tank we came to, she wanted to put her hands in. As we passed this area with the sharks, she kept saying that she wanted to swim with the sharks and the turtles!  She could not understand why I would not just let her go swimming!  Maybe someday she will get to swim with the sharks...or maybe she will settle for dolphins!

Write More, Read Less

2009--165
2010--160
2011--60
2012--24

This is a list of the number of blog posts I have written since I began blogging.  Only 24 so far this year.  I am missing so much of what is happening this year, it makes me sad.  6 of the 7 of us have had birthdays this year.  I realized that other than a brief mention of Bryce's, not one of them has made it into the blog.  As Fall Break approaches for the older boys (Bryce and Annalise are on break now), I decided to look back at what we did over Spring break earlier this year.  We did some great stuff...none of which made it to the blog!  I have the pictures, but they are all still tucked away.  This is my journal, my thoughts, my memories.  I want to remember and to have my children remember the good things that we do or that happen.

So many times I sit down to blog and I get side tracked.  I begin reading other people's blogs.  I love doing that and many times the blogs I read make me feel more grateful for what we have.  More grateful that our life is not more challenging than it is.  That is a good thing, but I am missing our life.  So I have made a commitment to write more and read less...or at least read later!  The blogs of good friends and family members I will still read, but the ones of people I don't really know, I will skip until there is more time.  I need to get our memories into the blog and then into books.  I need to turn more into our life for what it is...the good, the bad, and everything in between.

As much as I dislike writing without adding pictures, that is how it will have to be until later.  I will get them up soon...I hope.  So in a nutshell what we have been up to.

I had extra respite hours in the month of Sept that would be lost if I did not use them up.  So I took advantage of that time and worked on dejunking my house.  It is bad.  I think we may need to move so that I can start over.  :)  I've never lived in one place as long as we have lived here and I've realized that I don't really know how to dejunk and organize without moving.  Something new to learn I guess!

I need to get rid of the rest of Annalise's baby stuff.  I don't want to.

I also went to see a movie with my friend Denise Hauer.  We saw a matinee of The Odd Life of Timothy Green.  One of the best movies I have ever seen.  It was even better the second time.  I had a fantastic time.  It has been way too long since I have gone out with a friend, and Denise is a great person to be with.  She also gave me some dresses that she had made for Annalise.  They are adorable!

We are converting our garage into a room.  It will be a divided room for William, Jacob, Spencer, and the food storage.  By doing this John and I hope to have our bedroom back to ourselves (there are two boys sleeping in there now), and have a therapy room.  Much of our house is now taken up by therapy items and medical necessities.  They need a place of their own and we need more room to work with Bryce and Annalise.  We sometimes have up to 5 people here at a time working with the little ones.  It takes a village, I tell ya!

I continue to fight the transportation department, the insurance company, the support coordinator and others to just get what my kids need.

I am working to switch Bryce from formula to real food through his g-tube.  The first step has been to slowly increase his daytime feeds and decrease the nighttime ones.  He now gets 4 small meals throughout the day along with 5 boluses of water...plus his green smoothie.  Yeah, that's a lot of time spent feeding.  He is doing great though.  He has even been wanting to have small tastes of food by mouth again.  If all goes well, he should be free of night time feedings in a couple of weeks.  Then on to real food!

Bryce rolled over on his own twice this week.  He hasn't done that for a very long time.  He can also tolerate holding a balloon without throwing up!  The attendant care hours for both Bryce and Annalise increased this month.  I think it helps to have everyone home when the support coordinator comes by.  :)  I could not do this without the help I get on a now daily basis.

We are trying our very best to get enough calories and fluids into Annalise and keep her from needing a feeding tube.  She is struggling.  It makes me sick to watch her go through this.  She has very little desire to eat.  I guess I would to if I choked as often as she is beginning to.  Her therapists think that the decrease in appetite may be due to the fact that she is not as active right now.  I hope and pray they are right.  She holds food in her mouth.  I have to remind her to swallow.  She very rarely will feed herself anymore.  It take about 45 minutes to get a very small amount of food into her. What she is doing looks all too familiar.  Bryce had his Mic-key placed just over 3 years ago.

As I work to help Bryce and Annalise gain weight, I continue to try losing some of my own weight, or at least to feed my body in a way that will help it instead of continue to harm it.  We are working to eliminate artificial colors, flavors, and preservatives from our food in a hopes that it will help with some of the challenges the boys are having.  That is a serious struggle, but I think it will be better for all of us.  It will definitely not be an overnight change.

The boys are doing well with their counseling.  John and I are trying to attend the temple often.  John will be going out of town later this month and the next for work.

John's good friend, the friend's wife, and son were in a serious car accident.  We were able to go visit him in the hospital.  Luckily they are all still alive and will eventually be okay.  My little sister had an emergency appendectomy 2 days ago.  I wish I was in Utah.  Luckily my mom was able to go up and is caring for her now.  Debbie is doing well.

Like everyone else, we continue to have our normal everyday activities of school, homework, piano lessons, scouts, choir, church callings, etc and the normal challenges that come with them.   I live for Tuesday nights off and bunco with friends!  We work and pray everyday to keep our home peaceful and a place where the spirit wants to be, to keep our relationships where they need to be .  Some days are easier than others.

I called Jenni at the Ryan House and scheduled us for a weekend stay in Nov.  She encouraged me to plan some stays into the future as well since they fill up quickly.  I am working on that.  I love that place!

Well, it is time to go check on Bryce's food, change Annalise's position, and head to bed.  That is not nearly all we have going on right now,  but it is definitely enough for now.  Tonight I am committed to writing more and posting more pictures.  I'm hopeful that tomorrow and beyond, it will happen.

Testimony

October 2, 2012    4:54 AM

I feel the need to share my testimony. I know that the Gospel of Jesus Christ is true and real.  I know that we as human beings are not perfect, but that the Gospel of Jesus Christ is!  I am thankful for the special Celestial spirits who live in our home.  Being close to them helps me to feel the Savior's love and His spirit.  The veil is so thin around them and I love the feeling that comes when I am near them.   They make we want to do good, to be kind, to be more like Christ.  I know that they have a purpose on this Earth and that they have every right to be here at this time.  Our Heavenly Father has a plan  and he alone knows how long Bryce and Annalise will be on this Earth.  They will be here until their mission on this Earth is fulfilled!  Our Father in Heaven is the one who knows when that time will be.

I am so grateful for my three older boys, William, Jacob, and Spencer.  THE BEST BIG BROTHERS for Bryce and Annalise EVER!  They are so strong.  They are so good.  They are seriously incredible boys.  They make me want to do what is right.  To want to be a better person and to strive to do all I can to return to live with my Father in Heaven one day.  I love them so much. I know and I want them to know that their Father in Heaven is REAL.  He loves them and hears them when they pray their sincere prayers and share their thoughts and fears with Him.  He will never choose to leave them.  They are not alone, nor will they ever be as long as they rely on the Lord.  I love them more than they will ever know and am so grateful to a loving Father in Heaven who has allowed all of these special spirits to come and live in our home and to let me be their mother and care giver while we are on the Earth.  This is my greatest blessing.  Because of them, I am so thankful for my eternal marriage...so that we can be together again as a family, in a beautiful place full of love and free of pain.

I know that Joseph Smith was called and foreordained  to be a prophet of God.  To help restore the gospel of Christ to the Earth in these latter days.  I am so grateful for all he went through so that we can have the Book of Mormon today.  I know that it was written by prophets, through inspiration from God, for our day.  We can hear the Lord speak to us when we read the words on it's pages.  I know that, along with the bible, it testifies of Christ.  That it is indeed another testament of our Lord and Savior!

I know that our bishop and Prophet are called of God.  That our Prophet speaks with our Father in Heaven and leads us and teaches us the things that our Father knows we need at this time.  He will not lead us astray.    What a fantastic blessing!  To know that if we follow the prophet, we will be doing exactly what our Father in Heaven wants us to be doing.

I miss my other ward family members.  The members who have been separated from us by ward boundary changes.  The members who have supported me through so many things.  The members/friends who truly love me for who I am and who help me feel that love and help me have the desire to do good and to live up to my full potential...and continue to love me all along the way.  I am thankful for things like the broadcasting of the General Relief Society meeting  which give us opportunities to be together again.  I look forward to the day when distance, time, and money will not keep us from being close to those we love.  I miss my friends and family members who are far from me.

I have been hurt by someone very close to me this past weekend.  My trust has been slightly challenged.  I know that we are all human and that we will make mistakes.  I, for one, am far from perfect.  I know that and I know that because of and with the help of the Savior we can be made perfect.  I will be able to make it, with His help!  Because of Him and his love for me, I will be able to return to live with my God and Savior again one day.  He has a perfect love, an unconditional love.  He is able to forgive and love without question.  He is strong, and humble.  He is kind and perfect.  I wish I was more like him.  I long to be more like him.  I hope and pray that I can become more like him.

I am so thankful for my many, many blessings.  For all of the times that I am protected and do not even know it.  I know those times are many!  I know that God's plan is one of Happiness.   I am so grateful for the atonement.  I love my Savior and my Father in Heaven.  I love my earthly/eternal family and friends.  I am truly blessed.  I want to share all of this in the name of my Savior Jesus Christ.  Amen.