Our new friends

Leah & Henslee

Where to start???  This is an INCREDIBLE family. About a month ago I was up researching Rett Syndrome. I came across a few blogs of mothers writing about their daughters with Rett Syndrome. I read a few and thought to myself...this is not Henslee. These girls were beautiful courageous  girls but they weren't even similar to Henslee. Then I stumbled upon Leah's blog written by her beautiful momma. I think I read about every single post. I was drawn to this beautiful little girl. She was just like my little Henslee in SO many ways.  Her mom was inspiring, truthful, honest and uplifting as she wrote about her little Leah that was suffering from Rett Syndrome. I contacted her and she instantly wrote back. We emailed back and forth until we were able to meet on Sunday.  What a blessing it was to meet them. The more we talked the more I discovered how really similar Henslee and Leah are. They are both walking which is not very common among girls suffering from Rett's. They both hit milestones at the same age.  They both have incredible personalities. The list could go on and on. Leah is 3 years older than Henslee.  Henslee is following right behind Leah in so many ways. Leah is a beautiful girl and I am so glad Henslee has a new friend like Leah.  It seems like for the very first time in 2 years we have answers, we have help, we have someone that has gone through what we are going through and can help us through it.  We are so blessed to have been able to meet them.  I know Heavenly Father hears and answers prayers. Thank you Ryan and Maren for being an answer to our prayers!!!

BRAVE

Well the order from her Geneticist came in the mail today.  I took Henslee to our local hospital lab and they drew her blood testing for Rett Syndrome. A more specific test than they did a year ago.  The sweet girl sat so still on my lap and didn't even flinch as they put the needle in her arm. This little chicka is BRAVE. The lab tech was darling with her and made faces at her the whole time. After she walked over and picked out a bracelet from the toy bin and I had a trusty sucker in my purse that she well deserved. I walked out and everyone in the waiting room could see her the whole time and were amazed at how BRAVE she was. She is my BRAVE little girl. One mom commented as she herself was having her blood drawn was that she wished she could've done that for her. I agree. There are sooo many times I feel the same way. I wish I could go through all the things she will go through. I get angry thinking that she is 2 and no 2 year old should ever have to be as BRAVE as she is.  I wish I could take this away from her. Henslee is BRAVE and she was sent to this earth to be BRAVE to show us all how to be BRAVE. She is such an example to me. I love this little Miss more than anything.  I need to be a little more BRAVE like my beautiful little girl is. 

STAIRS!!!!

I couldn't be prouder! Little Miss Henslee has worked so so so hard to accomplish these darn stairs. She is a pro. Her Physical Therapist said it is equivalent  to us adults doing double the height of stairs for us. She has worked so hard and it has paid off.  I love this video. I love the smile on her face. I love Jesse's little jig to get Henslee motivated and excited to do the stairs. I love Nixon cheering on his big sis! I love that I am the mommy to these darling little kiddos. Man I love love love my little family . I am one lucky girl. These are the times that I feel so blessed that I get to experience these milestones with Miss Henslee. She is incredible.

A few of my journal entries

July 3^rd 2012

I decided I needed to write.  I needed to write the good and the bad things that are going on with Henslee. I needed to write about my feelings regarding this thing called Rett Syndrome or “like” Rett syndrome.  I need a place to vent to cry to rejoice and to be able to just put it out there.  I am currently writing as I hear Henslee screaming/ crying in her crib. She has been doing this for well over an hour. She doesn’t want to be held, she doesn’t want out of her crib. She doesn’t want to watch Mickey Mouse club house ( which is usually her favorite). I even have it in there playing on the Ipad in her room just to hopefully help her calm down. But nothing I do is helping.  Every time I pick her up to cuddle her or calm her down she just scratches at my face. I don’t know if she is tired? She hasn’t been her usual self in her sleeping. She use to sleep perfectly. I would lay her down at 7 pm and she would sleep until 7 am. Now we hear her up at all hours of the night just clapping or laughing. She never cries though. We have started using melatonin and that seems to be helping. It makes me sad, I have tears running down my face. I don’t  know what she needs. I wish so bad she could say mom I need………....I have to leave it blank because I HAVE NO CLUE!!!!! So today I am sad because I don’t know what to do!!!

July 4^th 2012

While at the Parade today we sat next to this little family. They had a 14 yr old daughter with high functioning Autism. She latched on to me like we had been best friends for years. She went up to Henslee and instantly turned to me and asked me if Henslee was DISABLED. I have never been asked that before. DISABLED??  I instantly looked at Jesse for some kind of answer and with a sweet nod of the head he gave me my answer. I told the little girl Yes she was DISABLED.  It stung a little ok it stung a lot to actually say that out loud. I think since Henslee is so little no one has ever said that or even really fully noticed she was different than the typical 2 year old. My new 14 year old friend continued to get candy for Henslee during the parade. Which was really sweet. She would yell to me "Jaymie there is candy coming, I will get it for Henslee." :) Maybe she noticed because she herself has a special soul and couldn’t help but recognize Henslee beautiful special soul.  I came home and quickly looked up the word Disabled. I don’t know why I guess I needed to know exactly what this word meant. I was in tears when I came across one of the definitions for Disabled = DIFFERENTLY ABLED! I loved this and this is exactly what Henslee is DIFFERENTLY ABLED. I will never again use the word disabled in referring to Henslee.  

At the parade, our new friend is right behind Henslee holding the bag of candy :)

 July 17^th 2012

Today we went to the park after our morning walk/ stroller ride! The kids loved it. I mean seriously who wouldn’t love going for a joy ride through our beautiful little quaint country town, while eating suckers and listening to a Little Mermaid sound track ;) . It rained last night, hard so we dodged all the dirt/mud run off into the road. We stopped at the park on the way home and swung on the swings. Henslee loves the swings. Let me reemphasize that…Henslee LOVES LOVES LOVES to swing. I don’t think there is anything that she loves as much as swinging. We only have 1 bucket swing at our park so we have to take turns. Henslee went first. I love to watch her swing. I love the HUGE grin she has on her face the entire time. I give Henslee a big push and then jump into a swing next to her with Nixon on my lap. We all swung and LIFE IS GOOD! Life is easy. We traded and I put Nixon in the bucket swing and Henslee on my lap. The cool thing today was that I told her to hold on and she did! She held on tight to me! She rested her head on my chest and I snuggled that little Miss as tight as I could. It’s days like today that I realize I can do this, I understand Henslee and she understands me.

 August 1^st 2012

Miss Henslee is doing the stairs. I am so stinking proud of her. She is up to about 2 steps all by herself. After 3 she sits down and sucks her thumb J She is one funny girl, she thinks after doing the first 3 she needs my help and all I have to do is put my hand on hers and she will do it. She is so smart and is starting to figure things out all by herself.

Here she is sporting her awesome diaper and shoe socks :)

August 2^nd 2012

Today was a great day! I was able to get a hold of Katie’s Clinic which is a Rett Syndrome clinic. They scheduled us for a appointment in December.  I sent Henslee’s previous test results to them and they had a chance to evaluate them. From the conversation I had on the phone with their coordinator they want us to have another more specific Rett Syndrome blood test done on Henslee. Which could be very tricky, since we are unable to see a Geneticist until February due to their busy schedule.  So I called Henslee’s Geneticist that we saw in Phoenix a year ago. Shockingly she was able to order the blood test for us. So we are waiting for that to come in the mail. As soon as that comes we can have the test done and see if it is Rett syndrome that Henslee has. I am  excited that we are moving forward. It’s a really weird feeling though. I spoke with Jesse about it because it seems so strange to be excited for this test.  Jesse said maybe it is because we already know that, that is what she has and it will just give us the confirmation. I feel extremely sad and extremely happy all at the same time. Is that even possible??? Now we will just wait for the test to come in the mail.

August 8^th 2012

Well last night was……interesting. Last night I was tossing and turning all night, which is not the norm for me. Usually the second my head hits the pillow I am out. But at 2:00 am I heard Henslee screaming. Not laughing or clapping which has become the norm for her but she was yelling and screaming. Instantly my thoughts went to all the little girls I have read about that have Retts.  I remembered reading that this is typically what they do the Screaming/ Crying. I got up and went and got her and snuggled in the chair with her. Jesse came in and wanted to hold her. I knew he needed to work today from 9-9 so I told him I would just hold her and get her to calm down. But he wanted her, he didn’t care that he had a 12 hour shift the next day. He wanted to hold his baby girl.  So I passed her to Jesse and  went and layed in bed. I couldn’t sleep. So many things were on my mind. The amazing love Jesse has for Henslee. I can’t even describe it. The amazing love I have for both of them. I also felt a lot of heartache. I knew that this was one of those moments where Rett Syndrome was very clear to me. It made me ache for Henslee. It made me ache for the little girl that would be consumed by this terrible Syndrome. To be honest I am scared. I am scared that Henslee will lose all function in her hands, lose the ability to walk and to start having seizures.  I am scared that I will not be able to handle all the major lows of this journey we are on. After Jesse put Henslee back to bed we had a chance to talk. Henslee is Henslee Jesse always says. She will make her own path. I need to remember that instead of being scared for what lies ahead.

 Joshua 1:9

 Have not I commanded thee? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest.

Ba Ba

For the past few days Henslee has been saying Ba Ba like crazy!!! So exciting, she has never said that before. It is awesome to hear something out of her mouth other than yelling :)

Accessories

Henslee's accessories!!

We have a love/hate relationship with most of her accessories. LOVE because they ALL help tremendously and HATE because the only accessory a 2 year old should have to wear is dress up jewelry. (which Henslee also loves to wear :)

 Little Chipmunks :) Or atleast that's what the little gray braces are called in her cute little shoes. They help shift her weight out from the inside of her feet to the outside so she is more stable when she walks.

Oh the beloved Arm Braces.. This is a pair that was on lone to us. These beauties are a life saver. They wrap around Henslee's arm and keep her from bending her arm. Which keeps her from tapping her face, Clapping and putting her hands in her mouth. Which she would do ALL day long if we let her.Yes that last pic is of the arm brace in the garbage. I know that was Nixon's doing but I am sure Henslee talked him into it :)

   The SPIO! When we say SPIO to Henslee we say it like on Mickey Mouse Club House when they call out for TOODLES :) Oh SSPPIIOO :) It is a compression vest that Henslee has worn underneath her clothes for the past year. It helps give her the sensory input that she lacks.

 So these are the "homemade" version of the Arm Braces. I am sorry but the cowboy theme did not match any of Henslee's outfits so here they are the new and improved Franks. Franks you may ask??? They are the new name for her arm braces. Jesse came up with Franks, it is short for Frankenstein because Henslee's arms are stiff just like Frankenstein :)

Oh the life saving leotard. :) If Henslee is not wearing her SPIO she has a leotard on. The last few months Henslee has decided that if she is not tapping her mouth she is sticking her hands into her diaper. Well for so many reasons we couldn't have her doing that we came up with this cute little leotard. It comes in pink and black and we just match it with her outfit of the day ;) Oh and the pics above crack me up, Henslee loves to be in her bed. Normally I don't let her in her bed unless she is sleeping but she was very persistent and how could I resist especially  since she was asking :)

Oh and my favorite accessory of all her beautiful little glasses. Ok to be honest sometimes I hate these little beauties. I wish there was a magic way to keep glasses on a 2 1/12 that has very busy hands.

Have you ever seen a 2.5 year old with such a non fun assortment of accessories :)

Welcome to Miss Henslee's life

Introducing......... Miss Henslee

Isn't she the cutest little thing you have ever seen!  She has a very busy /crazy life :) So I decided it needed to be documented. For her sake for my my sake ( Henslee's momma) for our families sake and for anyone out there that would like to learn about our little Miss. It will be full of the ups and downs that we are blessed with.

Henslee is a beautiful 2.5 year old. She is the loviest little Miss you will ever come in contact with. She loves to Hug and Kiss everyone. She loves people. She would rather be around people than any toys. She loves high energy things. She loves to swing. Swinging is probably her favorite thing to do. She is a super good eater. I bet her favorite thing to eat is Icecream. She LOOOVES icecream. She has well an obsession with Mickey Mouse :)  She loves her little Brother Nixon. They are best buddies well atleast until Henslee goes for his eyes and mouth which she likes to do often.  She loves going to both sets of Grandma & Grandpa's. She loves seeing all 22 cousins. She has a special bond with her Aunts and Uncles. She has a very special thing about her and that is She is Adopted. She knows and Loves her BirthMom and BirthDad and everyone invovled in their lives. We love them ALL.  Most of all she is LOVED LOVED LOVED by her mommy and daddy!! And I think she loves us back :)

Miss Henslee has a different journey to go on in this life than most.  This little gal has been receiving therapy since she was 15 months old. Her therapies include Physical, Occupational, Speech and Play therapy. She goes to a play group each week with children in the area with Special Needs. She see's a Neurologist, Geneticist and Developmental Pediatrician on a regular basis. She see's all of them because she currently has No speech, very delayed fine motor skills (close to a 6 month old level), very delayed Gross motor skills ( learned to walk at 2). Henslee has just started experiencing bad sleep patterns (like no sleeping), teeth grinding, uncontrollable fits,  and this little Miss for the last year has been consumed with tapping her mouth and clapping.

Henslee had multiple blood tests done last summer which all came back negative including one for Rett Syndrome. She also had a MRI which came back normal. We have just recently seen a new Dr that would like to test further into Rett Syndrome.  So we are currently waiting for a blood test to determine whether or not she has Rett Syndrome.  This is her journey.....................
Below are links to previous posts from our family blog.....

http://jesseandjaymie.blogspot.com/2012/06/miss-henslee-update.html
http://jesseandjaymie.blogspot.com/2011/12/our-litte-miss-henslee.html