Another update on Miss Henslee

http://misshenslee.blogspot.com/

Read about our recent visit to the Geneticist.

So beautifully written

  ( The following post was done by a beautiful momma that has a darling little girl with  Rett Syndrome. We met them this summer.  Read about that visit here.. Visit with Leah  She has inspired me so many times and this post was just another post that was perfectly written) 

Visit her blog @ http://thismareeatsoats.blogspot.com/

Today I ran 9 miles. 

I'm not sure why I was dreading it so much, but I was. It was supposed to be around 15 degrees, but I was going to go early enough in the morning that the forecast of snow wouldn't have started. Kate had a rough night, so I had a rough night and I just couldn't get myself to roll out of bed on time. I dreamed that I ran the 9 miles on two separate occasions, so when I woke up to realize I actually hadn't run yet, I was already exhausted. I was mentally going to run 27 miles that morning. Ugh. I spent the morning completely procrastinating before I finally put on all my winter running gear and opened the front door. 

It was snowing. 

And not just light fluffy flakes. The kind that are half melted and then re-frozen needles pelting you in the face. But, off I went. I had gone no farther than a tenth of a mile before I thought, "I should turn around to grab my Tuck key card. That way, I can run 2 miles to campus, 5 on the treadmill at Tuck and then 2 miles back." So, I turned around. I got about halfway home before I thought, "Maren, you wuss. Just run." So, I turned around again, and I ran. About a half mile out, my fingers were already frozen stiff, snot was dripping out of my nose and my face was raw. 

By this point, the snow was sticking and I really wished I had put on my stableicers. Even though I had 8.5 miles to go, there was no way I was turning around. So, I slowed my pace and basically tip toed on the icy spots.

At mile two, I saw another runner. He was wearing a ski mask. That was smart. 

At mile four, I saw another runner. She looked like me. Miserable. 

At mile four and a half, I was so beyond done. My right sleeve was covered in frozen snot and my nose wouldn't stop running. That's when I thought: 

Huh. Leah's nose does this a lot. I bet that's kind of annoying. 

A few moments later, a song came on my running mix that I wasn't really in the mood for, but, my iPhone was underneath my jacket's spandexy mitten flap and my fingers were too frozen to get it out. I was so frustrated that I couldn't move my fingers the way I wanted. That's when I thought:

Huh. This is just a fraction of how frustrated Leah must feel because her hands and fingers don't work they way she wants. 

I continually stumbled on areas of the sidewalk that had been halfway shoveled - trying to balance on mixtures of freshly fallen powder and old, icy, compacted snow. That's when I thought:

Huh. I bet Leah gets tired of continually stumbling because she can't balance very well. 

And after that third a-ha, I thought: You are a piece of work, Maren Layton. You are complaining about a 9 mile run in the snow and you have no idea how lucky you are to be able to run 9 miles in the snow. Who are you running for anyway? You wouldn't be out here on a 9 mile training run if you weren't running the Boston Marathon. And you wouldn't be running the Boston Marathon if it weren't for Leah.

And that's when I started to cry. Only passersby didn't even know I was crying because my face was already covered with snow that had melted and then refrozen on my face. 

Then I came upon a car that had slid off the road at a roundabout and into the snow bank. No one was injured, but the car was definitely stuck. As I fumbled to get my frozen fingers out of the mitten cuffs to help push, three others were already on their way to do so. I watched as I appoached - the car got out and the driver safely drove on his way. 

That's when I thought:

Sweet little Leah helps so many people out of ruts. I don't even know how she does it, but she does. 

The analogies went on and on. I'm not kidding. For the next 4.5 miles I thought of so many circumstances that I had been annoyed about that Leah deals with on a daily basis - my clothing had shifted and I couldn't fix it. Something got in my shoe. I was hungry (she only gets to eat when others can help her). I was tired (her seizure medications make her even more tired!). I was cold (she has horrible circulation). And on and on and on. 

If I hit an icy patch, I thought of Leah. When my nose dripped, I thought of Leah. When my fingers hurt, I thought of Leah. When I felt like I was too tired to run up the hill, I thought of Leah. When a song came on that made me smile, I thought of Leah. When I got a burst of energy, I thought of Leah. And as I turned the corner into my neighborhood, thinking of Leah, I was a mess. A sobbing mess. I got myself under control by the time I reached my house, but my perspective had definitely changed. 

Some days are hard. Some days are really hard. Some are hard mentally. Some physically. Some emotionally. But you would never know it by looking at Leah. She is so happy and easy going and patient and hard working. She helps me out of so many ruts each day. She helps me to find the strength to run up the hills. She gives me bursts of energy and makes me smile. And she is teaching me the value of hard work and patience and happiness.

So yes, running 9 miles (or 27) in a 14 degree blizzard wasn't necessary easy and it definitely wasn't fun. Rett syndrome isn't easy and it definitely isn't fun. But I have a pretty good coach. And if she can get me through these training runs, I have full confidence that she can get me through whatever Rett syndrome throws our way. 

When I reached my porch, I knocked on the door (with my elbow - my wrist was too frozen), had Ryan take this picture (because today is a day I want to remember) and then immediately hugged my little coach. Snot, tears, frozen fingers and all.

Update on Miss Henslee

We just got back from Katie's Clinic for Rett Syndrome. Go read about it here.....http://misshenslee.blogspot.com/

Happy 3rd Birthday Henslee

Happy Birthday to our sweet little Miss! I can't believe she is 3! It was a fun day remembering the day she was born, read about that here :)  http://jesseandjaymie.blogspot.com/2009/12/our-miracle.html. We had a fun filled day full of family, food and TINKERBELL festivities!! We played pin the wand on the fairy, balloon pinata, we colored Tinkerbell pictures, had cake and icecream and then finished the day after everyone went home watching the new Tinkerbell movie. WE ARE SO INCREDIBLY BLESSED to have her. WE LOVE HER more than words can say.

Miss Henslee's Blog

This little Miss is getting her own blog. Come check her out..........

Miss Henslee's Blog

Miss Henslee Update

How cute is this face :) Don't you instantly just want to smooch on her!! Love this little Miss!!

Well I'm going to blog a  little maybe a Long update on Miss Henslee.  Since moving to Utah we have been able to see quite a few more Doctor's and specialist's regarding Henslee.  Um not sure where to start........

Well for starters Henslee saw an Ophthalmologist at the Moran Eye center in SLC. They are supposed to be the best in all of UT.  Her eye site has gotten a little worse in her left eye so we have a new set of sassy purple glasses coming her way. She looks like a 10 year old. My baby is growing up.  I actually have gotten quite use to her pink "goggle" glasses. Other than the fact that we get asked constantly when Henslee is wearing her pink glasses if she is Down Syndrome.  I won't miss those comments when the new glasses come.

Next we saw a Neuro developmental specialist at Primary Childrens. She was amazing. We sat down with her and a Physical Therapist for over an hour and a half. We were in a large room filled with toys and they just watched Henslee. They listened to what mine and Jesse's concerns were. No one has ever done that.  Previous Doctors we have gone to we go into a tiny room the Dr asks us a few questions, we struggle to keep Henslee from crawling on the floor and all they do is take notes. This appointment was great. They were able to see how Henslee taps every toy to her mouth so much that she is unable to function or concentrate on anything other than tapping. They were able to see that she still walks as though she is a "new walker" They were able to  hear that she has no speech, no babbling, and very little ways to communicate with us. They were able to see that they use of Henslee's hands were closer to a 6-10 month old level. They were extremely kind to us and to Henslee. During the appointment Jesse and I had multiple questions that we have been needing answered for a very long time. One of them being,  is this a temporary thing or is this something she will grow out of? We have been told by multiple specialist that this could be FIXED we just need to "INTEGRATE" her?? I could shoot them all now for saying that because the Dr that day told us that this most definitely would not be something she would grow out of. My heart broke the moment she said that because I  think I new deep down in my heart that this was something Henslee would be working through her entire life. To be honest I felt like all those hopes and dreams  were gone. The hope of my daughter driving,  getting married and having children were all gone the moment she said that. Another question we needed to know was did she have any possible diagnosis for Henslee? She talked to us about Rett Syndome or something Like Rett Syndome. Which was one of the possible diagnosis when we did all the blood test's last summer.   We couldn't believe she would even suggest that. We did a little research on it last summer and it just didn't fit Henslee (at that time)( I remember thinking I would die if this is what she had) So she told us to research it and to let her know what our thoughts were on it. She told us if after researching it we still didn't think it fit Henslee than to disregard what she said but that if we found that it did fit her than there were other possible tests that could diagnose Henslee with Rett Syndome or Henslee could be in the 1% of girls that have Rett Syndrome that it just does not show up on any blood test.

On the 2 hour drive home from Primary Children's I looked up any info I could find on Rett Syndome. I looked at as many videos that I could on my phone of  all the little girls with Rett Syndrome. I watched on my  screen videos of these darling little girls without the use of their hands, without speech and many without the ability to walk. I bawled the entire drive home. I was watching all these videos and reading all this material about MY HENSLEE. It was the hardest thing Jesse and I have ever gone through. As much as we both wanted to say that this wasn't it or couldn't be it, It is the closest thing we have to being "it". After getting home and a few more days of finding out as much material as Jesse and I could about Rett Syndome we called the Dr and told her our feeling regarding the possible Diagnosis of Rett syndome.

We are now scheduled in February for genetic counceling and testing. And yes you read that right February. I am sick about it. That is the soonest they could get us in at Primary Children's. But supposedly they are the best. We are on their waiting list and hopefully we will get in sooner.

Click on the link "Rett Syndrome" below to learn more about it....

Rett Syndrome 

So here we are on another journey. To be brutally honest I am still not sure how I feel about this journey. There are days when I am so sad I don't even want to think about it. There are days when I look at my beautiful daughter and feel so sad that she can't tell me she needs a drink.  There are days when I get so irritated with people starring or commenting about Henslee as we stand in line at the grocery store. There are so many days where I feel so inadequate as her mom to be able to deal with the journey ahead. There are also days that I wish she could just run and play on the playground like all the other kids her age. There are days that i wish so bad she could use a fork to feed herself. But then there are also days that I can't stop staring at how beautiful she is. Not only on the outside but her little Spirit is illuminating.  She draws people to her. There is not a day that goes by that I am not surrounded by family and friends that encourage, help, give words of advice and most importantly LOVE my daughter!! There are so many days that she accomplishes the most simple tasks but those simple tasks are HUGE in our eyes. Everyday I can't believe she is mine and that Heavenly Father would trust me with one of his special, special daughters. There are days when I  realize so strongly that I was meant to be Henslee's momma, that this was meant to be Henslee's mission here on this earth. She was meant to touch all of our lives in so many incredible ways. I see everyday the bond between Henslee and Nixon and I know they were meant to be our babies and they were meant to be brother and sister and they were meant to be here at this time together. Heavenly Father has an amazing plan. I know because I see it everyday in the life I get to live with my 2 beautiful kiddos.  I know the plan isn't what WE have planned for ourselves but I know he  loves us and I know he is aware of our needs. I am incredible blessed to have all the blessings Heavenly Father has given me. 

We must be willing to let go of the life we have planned so as to have the life that is waiting for us...

-Joseph Campbell

Our litte Miss Henslee

 Our little Miss is growing up! I can't believe all of the major milestones she has been hitting. I have had  ton of people asking me about Hens and about all that is going on in her beautiful life. So I thought I would give you an update on her. Over the past year she has had one busy little life. We started in January taking her to her Pediatrician and knowing that she was very delayed. Everyone continued to tell us she was fine and everyone develops at different stages, well they were all Very right.  After I continued to tell her pediatrician of my concerns she finally recommend we see a developmental specialist, ophthalmologist and a hearing specialist. She had a screening when she was 15 months old in March.  They determined she had Global delays and she needed glasses.  She started wearing her stylin little glasses in April.  Her hearing was great. From there we started Speech therapy and Physical therapy in March.  We were on the waiting list for Occupational therapy(which is for her fine motor skills) We finally got into Occupational in August.  When Henslee turned 18 months old they recommended we see a Neurologist.  We saw a Neurologist at Phoenix Children's hospital in June. The Neurologist recommend a few blood tests. In August Henslee had her blood drawn multiple times testing for Angelman, Retts, & Prader-Willi syndromes and they also did a Chromosome analysis.  After a few weeks of waiting for the blood results they came back all negative. It was an extreme relief to hear but we also were not in denial.  We new something was going on.  So next they wanted and  MRI done of her brain.  They sedated our little Miss Henslee in September.  Which was extremely hard to watch. She did fantastic.  She came out of anesthesia very well.  Few weeks later everything came back great on the MRI.  Henslee's Neurologist told us he would like us to see a Geneticist.  We saw a Geneticist in October which had us retest for Angelman and Rhett's.  The lab did the blood test incorrect the first time.  But once again results came back negative.  The Neurologist and Geneticist told us to come back in 6 months for a follow up.  They told us many children don't get a diagnosis at all or atleast  until they are older.  A few key things that told us were 1-Henslee has major global delays. She is at about a 1 year old level in her Gross motor skills. Her speech is at a 7 month old and her Fine Motor skills are at a 10 month old level.  She has some sensory nerve issues. She doesn't understand pressures very well, she does not have a natural response or sometimes any response to pain.  She also does not understand the feeling of being full or hungry.   2-Even though Henslee was delayed it was very encouraging that once she learned a new skill that she  held on to it. She never digressed. 3- We were all ready doing all the things that would be recommended( Speech, PT, OT)  in helping her with whatever diagnosis they would have for her.

We continue to go to all her Therapies each week. She is now going to Occupational therapy twice a week, Speech and Physical once a week. We are starting to have a Developmental Specialist come to our home once a week to help teach "selp help" skills like feeding and dressing herself among many other things. Hens does not cry or at least not very often.  When Henslee falls or gets hurt we show her what the natural response is by telling her Ouch that hurts or that is painful.  Henslee started wearing a compression vest/ Spio every day under her clothes. We call it her Batman suit.  It helps give her the sensory input that she is lacking.  She started tapping everything to her mouth. Which we just recently found out it is called "Stimming"  She has been doing it since she was really little just in different forms so we are learning how to redirect that into different things.  Henslee's therapist have taught me so many amazing ways to help teach Henslee.  I don't know where we would be without all their help.

At this point Henslee does not have a diagnosis. Which has become a good thing to me. If Henslee were to have a label on her I might not push her as hard as I do.  She has the potential to do ANYTHING!!!  She has progressed immensely in the last few months.  She has recently started walking, standing up on her own.  She is able to use a spoon.  She is starting to understand atleast 10-15 verbal commands. She has started throwing fits ( I know not many parents would encourage that but right now we do :) She is signing more very well.  She is babbling a ton more.  She hands you objects.  She rolls a ball back and forth.  She is turning pages to board books. We have really really good days where Henslee learns multiple new things within in the day. She is the most LOVING little girl ever. She gives kisses and hugs to everyone. She is extremely social. She is beautiful. She makes us laugh all the time.We are so proud of her and all her amazing accomplishments. She has the most special spirit about her.

We thank our Heavenly Father everyday for this special little girl. I have learned so much from her. I am still trying to learn patience, understanding and also faith. Jesse constantly reminds me that Henslee's  mission in life  was not to come to this earth to learn to stack blocks but she was sent here to teach us all.  I am constantly  being taught by her with also the help of my Heavenly Father. I feel privileged to be chosen to be her mom. The days I feel like I am doing an extremely horrible job at raising this beautiful girl  I have to remind myself Heavenly Father trusted me to do this. So I will!! HAPPILY!!! We have amazing families. They are extremely supportive and helpful. I have seen more blessings and amazing little miracles come this last year than any other time of my life. I am EXTREMELY BLESSED and GRATEFUL FOR MY LITTLE MISS HENSLEE!!!!!!!

I had a cousin share this story with me, I love it............

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Kiddos

Henslee L Maughan 2 years old

Nixon J Maughan

Happy 2nd Birthday to Miss Henslee

The Birthday Girl

Minnie Mouse Party

I can't believe she is 2

Jared & Lindsey. Henslee's Birthmom!!

We started the day with Minnie Mouse pancakes

Lunch  was Minnie Mouse Chicken nuggets

Then off to the largest Jungle gym I have ever been to Makatu's.

Henslee's cousin's and Aunts came to share in her big day.

We had such a fun day! We love our little Miss Henslee so much and are so grateful for her beautiful spirit in our home. She has taught us more than we could have ever imagined. I know she was meant to be in our family and I couldn't be more grateful for her Birthmom Lindsey for making such a selfless decision in placing her in our family 2 years ago. Happy Birthday sweet girl. Mommy and Daddy Love you more than you will ever know!!

We made a BIG goal to have Henslee walking by the time she turned 2. Henslee has been going to physical therapy once a week since May. She has been very sporadic in her steps. Last week my sister Janelle called and asked how Henslee's walking was doing and at the time she was taking 2 steps and falling. The very next day Janelle loaded her whole family in the car and picked up my sister Kaytie on her way to a 13 hour drive to my house to get Henslee walking. All week everyone continued to work with Henslee. Over and over Henslee was picked up and pushed to walk by her Cousins and Aunts. I couldn't be more grateful to them. They truly were an answer to my prayers because by Henslee's 2nd birthday she was walking. I love ALL of them. THANK YOU THANK YOU for being there for us.  I have the best sisters in the world!!!