The last couple months Elise has struggled significantly getting to sleep. Often it has taken 2-3 hours for her to eventually fall asleep then at times has woken up in the middle of the night, not able to go back to sleep. On a particular difficult night when my husband was gone due to his church calling I put the kids to bed by myself, dreading what lay in store for me that night. I quickly tucked the other 3 kids in, then laid with Elise in her bed, hoping she'd fall asleep quickly.
However the night began like all the previous nights with her. She thrashed her body around, cried, and kicked the door over and over. I tried to sing to her, read her books, and give her squeezes; I tried every possible thing I could think of to comfort and soothe her but she continued to hit herself, scream and kick the door. I realized there was nothing I could do that would help so I just laid there and ached for her. I so wish I could have taken away some of her pain and possible loneliness she may have felt. It was one of those moments I wished from my very core that she could talk. Oh how I wish she could talk! I wish she could tell me what was bothering her, what was making it so difficult for her to settle. As a mom I want to comfort my children when they are unsettled! However I couldn't comfort her as much as I tried. I yearned that she could tell me how I could help her but she couldn't and I wasn't enough. It was then that I cried out to Heavenly Father my pleas and I just held her.
Wanting so desperately to break her silence that holds her thoughts captive, I soon heard a voice, enter my mind. It told me to play primary music for her. I listened and found some primary music to play for her. I then wondered which song in particular would help her. Again I felt prompted to turn on the song, "Follow the Prophet." I wondered how this song could possibly help her fall asleep because it is not a soft, slow song! It is her favorite primary song though so again I listened and turned it on, praying it would help.
I turned it on and within seconds Elise's cries turned into laughter. Her whole demeanor changed instantly. It was like magic. It was incredible to watch the difference change in her. She was smiling. She was happy. I was shocked at her transformation. Everything tense about her melted away and she seemed at peace. I slowly walked towards the door then left her. I listened on the other side of the door. It was quiet. I listened a little longer and still there was no sound from her.
She had fallen asleep. It was a miracle! It truly was.
I love reflecting on this moment. Elise can't talk. She can't tell me what she needs or wants very well. However there is One who knows perfectly what she needs as well as what all of us need and want and that is our Heavenly Father.
The Holy Ghost who is a third member of the Godhead and a personage of spirit. whose role it is to be a comforter, teacher, and revelator was Elise's comforter and my revelator that night. He was able to SPEAK to ME about Elise, telling me exactly what she needed that night. He revealed to me what Elise needed. He in a sense was Elise's translator during that long, difficult night. Through the Holy Ghost I could know how to comfort Elise and how to help her. The Holy Ghost broke her silence for a moment. What a gift.
Elise has not been left alone to carry her burden nor am I alone in knowing how to help her. "...understand that we do not ever walk alone. I promise you that you will one day stand aside and look at your difficult times, and you will realize that He was always there beside you." -Pres. Thomas S. Monson
The nurses know how to make even a blood draw look cute.
Things have been busy around here but here is a quick update on where we're at with Elise. At the end of December we took another trip to Primary Children's Hospital for possibly our last test. It had got bumped up 2 months earlier so we were pleasantly surprised. This was the Exome test that is quite new. Ez, Elise and I all got our blood drawn and will each have 20,000 chromosomes looked at. If Elise has any deletions or duplications then they will compare those with our chromosomes to see if we have the same deletions or duplications. If we don't then they will know most likely what the cause is and could give us more direction.We should find out any day on the results of that test.
Lately we have also been in contact with Katie's Clinic for Rett Syndrome in California. We've spoken to them, sent videos of Elise and sent over all her medical records. We'll be traveling to California sometime in the next few months to have Elise seen by specialists there so they can help us in knowing how to care for her, especially with her communication device. They have already been so helpful to us and I feel like we're on the right track. I'm excited to move forward on this path.
Life is so good :)
During Elise's home therapy, we have started to work a lot with her eating with utensils. When she was a baby I captured a few different photos of her holding a spoon independently. She never was able to spoon feed herself but at age 1 she could hold a plastic spoon. The above picture of when she was a baby shows her not only holding a spoon but she's holding it with her right hand which she still has been unable to master. After she lost some hand use she's been unable to grasp a spoon with either hand. A year or so ago I bought foam tubes to put over the spoon handle to raise it so it had a larger area for her to grasp. She could hold it and only hold it with her left hand but with some assistance and needed full assistance scooping and bringing it to her mouth.
I am elated to report she no longer needs the foam tube and can hold a child-sized spoon independently! It has taken four years to relearn this skill but she is doing it. She also can do a little scooping motion and eats all foods preloaded on her spoon and fork by herself! It's amazing to watch. She still has moments of frustration or sensory overload and I have to fully take over feeding her but she's getting there. Little victories.
This book is Elise's one momento I kept that is a visual reminder of what Elise used to be able to do, then was taken from her. From the time Elise was 2 years old until about 6 months later Elise used to turn pages in books all day every day. I don't know if I remember ever not seeing her with a book in her hands. She loved them. She especially loved the Winnie the Pooh books. This book was her favorite and was well loved! I would go to the library and get piles of books for her until I noticed a few books, even board books were starting to fall apart and pages were ripped out of books. I never knew board books could fall apart, let alone that quickly. A hefty $40 library fine stopped me checking out books and Elise had to be content with the books at home.
Like her speech I don't remember a specific date or month when I realized she wasn't holding her beloved books anymore. It just happened. Then one day, like her speech I noticed and started to fully grasp what was happening.
Elise had lost most of her hand use.
After that I tried my hardest to place a book in her hands but she couldn't even grasp it anymore. I tried to have her turn a page in a book. She couldn't. Even the thick pages in board books didn't help and hand over hand was futile. Three years later at age 5, Elise still has not regained this skill back. She has made some immense progress in other areas using her hands and I consider each of those successes a miracle. She fights every day to regain lost skills and gain new ones.
Looking at this book is a painful reminder of what she has lost physically. One day, either in this life or the next she will regain this skill back. Her body and mind will be perfect like her spirit already is. Glory be to God! Because of Christ this is possible. It's true. My heart bursts with so much love and reverence and awe at such a glorious thing. And one day I will have my princess read books to me and all that was lost will be made whole again.
This is my easter declaration. Hallelujah!
“For reasons usually unknown, some people are born with physical limitations. Specific parts of the body may be abnormal. Regulatory systems may be out of balance. And all of our bodies are subject to disease and death. Nevertheless, the gift of a physical body is priceless. Without it, we cannot attain a fulness of joy.
“A perfect body is not required to achieve a divine destiny. In fact, some of the sweetest spirits are housed in frail frames. Great spiritual strength is often developed by those with physical challenges precisely because they are challenged. Such individuals are entitled to all the blessings that God has in store for His faithful and obedient children.
“Eventually the time will come when each ‘spirit and … body shall be reunited again in … perfect form; both limb and joint shall be restored to its proper frame’ (Alma 11:43). Then, thanks to the Atonement of Jesus Christ, we can become perfected in Him.”
—Russell M. Nelson, "We Are Children of God," Ensign,Nov. 1998, 86–87
After Elise's speech therapist's recommendation on this new ipad case, I hesitantly decided to switch from Otterbox to KaysCase Kidbox.
And I am so glad I did!
It's incredibly lighter so Elise can actually carry it now without dropping it. She only uses her left hand to carry it. For some reason her right arm doesn't cross midway on her body most of the time so having it lighter has significantly helped her decrease in drops over the last few days.
I love, love the handle that turns into a stand! This is probably my favorite feature. It can stand in two different positions. During her table time at therapy and during meal time this has been so nice. She can just walk up to it and say what she wants rather than getting me to hold it up so she can choose.
I was worried about how it would hold up because of how frequently she does drop it or throw it but it has survived multiple crashes to the kitchen floor, screen down and it's survived. Usually it just bounces since the covering is made of foam. The color is fun for little kids and the price...only $11 on Amazon so overall I'm super pleased with this purchase.
Cal is 2 years old. He is full of energy and personality. Elise and Cal have a very unique relationship. They don't read books or build blocks together. They don't spend endless hours playing animals like my older daughter and son used to when they were their age.
Instead their days are somewhat isolated from one another while Elise is in therapy or at school. The time that Cal is around Elise is sometimes fascinating to observe. Well before age 2, Cal was watching us and how we interacted with Elise. Observation and imitation are key elements in learning. I hadn't known that at such an early age he was watching us with her until one day I told Cal it was time to get in the car to go to therapy. Without prompt he called, "Eese, Eese!" He went looking for her and when he found her he grabbed her hand and led her down the stairs. Of course I was shocked at what I had just witnessed. I opened the door and Cal led her to her side of the van where he waited for me to help her in. It was incredibly sweet. The above pictures are the ones I took of this moment.
Since then I always find him taking Elise by the hand, playing the big brother role. He has definitely assumed this responsibility on his own and it is so interesting to see. When she's hitting herself in the eye, he'll take her chewy and try to put it in her mouth. Sometimes he'll try to feed her pretzels and it makes me laugh! I get worried she'll bite his fingers and he must be too because he usually ends up dropping them as soon as they touch her lips. He'll even try to help her with her cup. My favorite thing is to just sit back and watch how they interact with each other. It's funny, fascinating and sweet. I told Cal to share his juice box with her and he just held it by her, almost getting mad that she wasn't drinking what he was trying to share with her. Elise on the other hand didn't know how to manipulate the juice box and I just had to smile. Both of them were trying their hardest.
Of course there are days when "big brother" gets mad at Elise for drinking water out of his cup then throws it across the room. He's learned to yell when she's about to grab some food off the counter and it's bound to be a mess. And then there's their hitting matches. Those are fun.
However this little, big brother has matured and learned to look after someone other than himself. That's a pretty big thing to learn at his age. He is imitating what we do with her. This has taught me how powerful our examples are and how much our children observe our actions.
President Brigham Young once said, “If each and every one of us who are parents will reflect upon the responsibilities devolving upon us, we shall come to the conclusion that we should never permit ourselves to do anything that we are not willing to see our children do. We should set them an example that we wish them to imitate.”
Today is my little girl's birthday and she turned 5! I thought I'd celebrate this last year through pictures. Happy Birthday sweet girl.
Elise's behaviors have diminished greatly over the last year. She is much more content and happy and I love it! We can't get enough of her smiles and giggles.
As I've reflected on where Elise was a year ago I can certainly say she's accomplished a lot. Her motor planning with going up any playground equipment then figuring out how to position her body to sit on a slide then push herself down has improved and her movements are quicker. She learned how to climb into the car then sit down in her seat. This still takes some prompting but I don't have to physically do it all for her anymore. She can sit criss cross now, put stars on a star stacker toy, and put beans in a glass soda bottle.
At the end of summer Elise could hold herself up in the swimming pool with a life jacket on for about 30 seconds! This was an amazing improvement. When we first started taking her to the pool, if we at all let go of our strong hold on her then she'd fall face forward into the water. She also learned at the end of summer to scroll on her ipad which has opened up so many possibilities for her communication now.
She has also learned to bring things to me she wants. For this to happen they're mostly highly motivating items like a bag of marshmallows, a juice box, or her ipad. I could probably be on a commercial for Otterbox and show all the different ways your ipad will survive because of its strong, durable case. Her ipad has survived being thrown down the stairs multiple times, thrown onto tile floor, being stepped on, and thrown some more. It's been through a lot!
Just a few of the many family members and friends who love and adore Elise. They are all so good to her and we feel incredibly blessed to have family who do their best to include and help her. We have such an awesome support system!
Some days are just plain hard for this sweetie. Sometimes she's done and refuses to go anymore then sits in the dirt and has a meltdown. Sometimes sleep doesn't come easily for her or she wakes up in the night unable to go back to sleep. Sometimes she tries so hard to use her hands but they don't do what I know she intends for them to do. Sometimes I know she wants something but can't relay it to me and it is so frustrating to her. Sometimes I just ache to break the silence between us. These are the moments I so wish I could take this burden from her.
We took 4 trips to Primary Children's Hospital this year for Elise. She had a variety of tests done and although nothing has presented itself we are further ahead in knowing what she doesn't have and know overall she is a fairly healthy little girl. She is a champ.
In addition to her other therapies, this summer Elise was able to be in equine (horse) therapy. It wasn't the best of experiences for her since it was in the afternoon and she was tired by that point. Near the end of her sessions she did better with Bryn riding behind her though. Hopefully this next summer will go better for her.
And of course she was the most adorable witch for Halloween! Compliments to her older sister Bryn for making a Halloween necklace to match her outfit. Happy birthday Princess!!! You are loved and adored by many and we feel privileged to have you as our daughter.
Watching the magic of Christmas envelope my children through the holidays and on Christmas day was pretty special. My son asking to go to bed at 5PM on Christmas Eve and my older daughter pretend fainting with each opened present because of pure excitement was enough for me on Christmas morning. I was content and at times my heart almost burst with joy and love for my family. That itself was enough.
Hours later though when extended family members began arriving, the biggest surprise presented itself. Ez came strolling through the room pushing a stroller holding Elise and our youngest son Cal in it. I gazed on in disbelief at him then back at the stroller then back at him. I slowly stood up. I was surprised, shocked and speechless when Ez whispered in my ear that this was the stroller we had been looking at and wanting. He told me siblings and parents on both sides helped Ez purchase it for Elise and me.
I couldn't help the tears from coming. Why?! I kept thinking. Why would Ez do this and why would everyone else do this? As I looked around the room at all the wet eyes I felt an overpowering feeling of love.
Because of love Ez kept saying. They love Elise and want to help. This last week our family has been memorizing a scripture in Jude. It reads, "And some have compassion, making a difference." Ez was moved with compassion to come up with this whole surprise idea. Family members were moved with compassion and because of their compassion and love, they have made a difference for me and certainly Elise.
Just a few of the family members that helped Ez buy this for Elise me. They are the best!
This stroller means a great deal to me. It's not just any stroller. As Ez and I have again thought over our future with Elise we realized she would soon outgrow the strollers we owned. Her fifth birthday is next month and she is getting so tall. We knew we needed to get something big and sturdy enough for her soon. It would need to be something that would grow with her as she got bigger so it would need to be a fairly good quality stroller. Elise can walk and run but only for very short distances. She wears out very easily. At the end of this last summer she was able to walk all the way to our neighborhood park. It was incredible. When we began to head back home she refused quite vocally through cries that she had had enough so we put her in the stroller we had come with. We will continue to challenge her but know realistically a stroller of some sorts is needed for her.
This stroller converts to a bicycle trailer, hiking trailer and a cross country skiing trailer! (And yes it came with skis). Who knew a stroller could do so much?! It holds up to 100 lbs so it will easily grow with her. It will be a huge blessing for us so we can continue to do things as a family rather than leave a couple family members behind. This is something very important to us.
The best part....I can continue to run races with her!
I gained an even stronger testimony of families that morning. It gave me a glimpse as to how God intended families and extended families to be. Families that serve, families that are selfless and loving. Families bound together in unity because of His Son, Jesus Christ and His example. I feel so blessed and grateful to have such a family.
I can't wait to start training for our next race!
After talking to Elise's geneticist about her test results a few weeks ago, she stated she wanted to meet with us again at Primary Children's to discuss where we go from here. I called the front desk to schedule an appointment. The lady said she just had a cancellation and we could be seen in a couple weeks OR the next available appointment would be mid-February which is when we were expecting to be seen. Of course I made the appointment to be seen in a couple weeks and couldn't believe we were getting in so soon. Again we are grateful for the Lord's hand in all of this.
Post by Ez: We made another trip to Primary Children's hospital for Elise the end of last week. We met with the geneticist doctor who was very kind and knowledgeable. Here is what we learned:
Elise's geneticist called and gave us her latest test results. Deletions and duplications were being examined in her chromosomes.
Again, it came back normal.
This tells us that all possible variances on the MECP2 gene for Rett Syndrome have been tested so genetically Elise doesn't meet the requirements. Clinically, she still fits under that category. 10-15% of rett kids are diagnosed as Atypical Rett Syndrome without blood work showing that.
The geneticist isn't comfortable throwing out a diagnosis yet for Elise and is still determined to find the underlying cause. She has a couple more tests that she feels is relevant for Elise and wants to observe her again to see if she missed something from her previous observation.
A diagnosis would mostly be beneficial to us for Elise's and our future. With whatever she has, are there regression stages and/or possible health issues that we'd need to be aware of and keep an eye on?
We're not sure how much longer we'll keep playing this testing game. Emotionally we're not involved in it anymore which makes this whole thing so much easier. It is what it is. We'll probably go ahead with this next test and see how we feel after that.
Elise is continuing to receive intense therapy 18 hours/week in addition to speech and occupational therapy. She is improving more and more and we are so proud of her and her persistence. Who she is is not defined by a diagnosis. She is Elise, the happiest, most angelic little girl who can make anyone smile and we love her to pieces!
I LOVE being a mom to my 5 kids; one with special needs. There is no greater joy than being a parent! I love each one individually but this blog will mostly focus on our daughter with special needs and our journey with her. Thanks for reading!