Our visit to Katie's clinic

A few months ago when Dr Winters at Primary Children's suggested that Henslee may have Rett syndrome I dove right into it on the internet looking for any information I could about it.  I came across Katie's clinic for Rett Syndrome.  I called that day and spoke to an amazing woman Erica a mom of a daughter with Rett Syndrome.  I found so much comfort in speaking with her, I scheduled an appointment that day.  Fast forward a few months Henslee was tested for ALL cases of Rett Syndrome.  We received all blood work back stating that Henslee did not have Rett Syndrome.  So I called and spoke with Erica again but they still suggested it would be a good idea to visit their clinic since Henslee shows so many of the characteristics that girls with Rett Syndrome have.

We got back tonight from our visit to Katie's clinic. We had an incredible time visiting San Francisco and seeing all the beautiful sights there. But by far the best was going to Katie's Clinic. We walked in and Henslee was greeted with more hugs/smiles/and joy than I had ever experienced at a "Dr Office" before.  I was almost brought to tears more than once over the kindness and love that was shown to our little family.  The best part was we felt entirely comfortable.  We didn't worry that anyone would judge us or look at our daughter in a weird/concerned way because of the things in Henslee's little body that she cannot control.  Everyone EMBRACED her!
 
 It was truly incredible and I wish so bad that people that we see in our everyday lives could see what we have always seen in Henslee and see what ALL the incredible people at Katie's clinic could see in her not just a non verbal/crazy arm and hands little Miss.

We started our appointment at 10 am and it went until 4:30 pm. We saw a range of Doctors including a Neurologist/ Geneticist/ Pediatrician/Physiatrist/ Communication specialist/ PT/OT/Nutritionist and a music therapist.

 We saw them all in one day!!
 
 It takes months and months to see any of them and we were lucky enough to receive all their incredible knowledge in one day. We saw the best of the best. These Drs specialize in Rett Syndrome. The Geneticist is a world renound Dr specializing in Rett Syndrome.
 
 Henslee had an x ray done of her little hips. They are slightly off but nothing to alarming. The picture above is her having an ECG done which she did awesome with.

We learned so many new things for Henslee. New ways to communicate with her, new ways to deal with the "tantrums", new ways to make her life easier. We had a million questions answered and came home with a new knowledge of Rett Syndrome. The biggest question we had was DOES HENSLEE HAVE RETT SYNDROME?  Even though Henslee's blood tests have all come back negative in regards to having Rett Syndrome there are plenty of girls that are clinically diagnosed. So they are diagnosed off of their symptoms instead of their blood test.

Miss Henslee is a very special case. Girls with Rett Syndrome have what they call a deletion in the MECP2 Gene. Henslee does not have deletions which makes her not have Rett Syndrome. But she does have a nucleotide sequence variant. Which means she is not missing any part of the gene but the sequence is not in the right order. It just so happens to be on the exact gene that Rett syndrome affects. So what does that mean??? Well after speaking to all of the DR's that day there are 6 other children in the world that have the same "mix up" as Henslee.  They all show the same symptoms of Rett Syndrome girls.  So right now there is no name or enough research that has been done on this specific Mix up.  Now we feel very complete and comfortable with the fact that we don't have a diagnosis for Henslee other than something very similar to Rett Syndrome.  Before when Dr Winters at Primary Children's told me that Henslee had something "Rett Syndrome like" I couldn't except that.  I didn't feel like we had done all we could do to put this puzzle together. Now I feel like we have done all we can, we have seen all the specialist we could see and we finally do have some direction to go in.

We now have a beautiful RETT SYNDROME FAMILY to be a part of.  To have help from.  To have guidance through this roller coaster we are riding.  I needed that help and guidance for my daughter.  I had no direction to go in and now even though she doesn't have Rett Syndrome she has the closest thing to it.  So we will find help and comfort through those families that are also dealing with the same things we are.

I have learned a lot over the last few days. I was able to see many children with disabilities a lot more severe than Henslee's.  I was able fully appreciate the little things that Henslee can do, because SHE CAN DO THEM.  I was able to see true genuine love from complete strangers.  I have felt comforted by the spirit so strongly over the last few days.  I feel completely honored/privileged and extremely inadequate to be able to have Henslee be my daughter.  Heavenly Father loves her!  He loves her more than I do and I can't even comprehend that.  I am blessed and truly HAPPY that I get to be her Momma!

Henslee and her new Beautiful friend Avery. Avery's mom is who I first spoke with at Katie's clinic

To all those  INCREDIBLE AND BEAUTIFUL individuals we met through Katie's clinic....
"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.
-Elizabeth Kubler Ros.

Sleep

Sleeping in our house has been quite interesting for the last few months. We noticed over the summer while we had family spending the weekend at our house we had Henslee sleeping in our room. We woke up to her at 1:30 am hysterically laughing.  Then a few months later while camping we noticed she was not sleeping at all but bouncing in her pack n play. Both have gotten extremely worse in the last few months. On average Henslee sleeps from 7-11 pm and then is up bouncy and laughing until the next morning. She is losing at least 4-5 hrs a sleep per night due to bouncing.

 

 We have talked to all of her therapist about this and no one can seem to come up with anything to help. We tried Melatonin which is supposed to help with sleep. It will help Henslee go to sleep but will not keep her asleep. We all need our sleep. She is becoming very agitated/angry during the day and I can only imagine it is due to no sleep. We ended up taking the springs and base out of the bottom of her crib so she was unable to get the extra bounce from that. We also saw her pediatrician who prescribed her Trazadone, a medication to help with sleep. We gave it to her for the first time last night so hopefully we see a difference. She did wake up today pretty angry so I will keep my fingers crossed that it will eventually work.

Another thing we decided to do was put a gate in Henslee's crib. My hubby is a genius. It has been getting quite hard to get Henslee in and out of her crib. Our little Miss is at 41 lbs and while she is throwing her tantrums she might as well be 100 lbs. So Jesse installed a gate so she is able to get in and out of her bed on her own!! Yipee! My back is shouting HOORAY!!! We tried it with just an opening for 1 night but after we put her down we could hear her in her room destroying everything. So for her own safety we installed the gate. Which keeps her safe and sound in her bed!! She even knows how to get in and out. This little Miss is so smart!

After putting her in their for the first night and locking the gate it made me really sad. A gate with a lock on my daughters crib??? What the heck!!  But I have to realize we do things a bit different around our house. We do what we need to. We do what is best for Henslee. We do what is best for our family. So what if it's different? So what if it's not the norm. WE are definitely not the norm and to be honest I am glad we are not the norm.

Therapy

This morning Henslee had Therapy with Brian her Occupational Therapist. We have been testing out a Listening Program. Henslee will wear head phones and listen to different frequencies of music. The first time we tested it on her she shocked us by actually keeping the head phones on her head for 10 min!! Well today after having her listening session of 15 min and keeping the head phones on pretty much the entire time she was  new gal :) She sat on Brians lap for a good 30 minutes while they read books together. I have given up on having Henslee sit on my lap to read books. She hates it, she arches her back and yells. She just wants down. So I been reading to the kids while they are strapped in their highchairs and entertained by eating. So to have her sit and read books and really look at the pictures for 30 min was INCREDIBLE!!! I am so INCREDIBLY grateful for ALL of Henslee's therapist. They are all INCREDIBLE people and have helped me more than I could ever imagine. They love Henslee and I can see that by the way they treat her and love her while they come to our home to help us learn and better understand the needs of Henslee. Today was a great day! So Thankful for Brian to be in tune with Henslee and to see her needs.

Couch climber

That's right Folks we have a couch climbing little girl!! Who would've known  a Pez candy would be such a great motivator!!

Tantrums

Miss Henslee has become quite the tantrum throwing little gal.  It has gotten to the point that I am nervous to take her anywhere. When the tantrums started a few months ago they were at home. Then she started throwing them in Daddy's car. So we began to think that she hates Daddy's car. Well she started throwing them at the store, in any car, pretty much anywhere.

These tantrums are not the typical tantrum. I know what a tantrum is. Henslee's little brother throws them quite often but the difference is he settles down after 5 min. Henslee will last for hours, sometimes the entire day. With Nixon I can reason with him ask him what he needs and he can tell me, Henslee on the other hand can not!  She is suffering. She is so frustrated. She is so sad. She is just down right mad! And as her mother I can not help her. I can't hold her without getting elbowed in the nose, punched in the face, scratched in the chest or bitten. She is getting to big for me to handle during the tantrum. I have to just let her be. We were with family over the weekend and it happened to be one of her bad days. We were celebrating a birthday, which should be a ton of fun right? Not in our case. She was mad. So I went to put in her in bed and just held her, I held her as tight as she would let me and she bawled. I bawled.   We are seeing her pediatrician on Monday. I hope that they will be able to give us something to give her to help calm her down. It breaks my heart. Henslee has always been one of those easy going little girls. She has never really been a crier. Even when she was little she didn't cry, hardly ever. I just hate to see my little Miss so frustrated. I can't even begin to imagine how frustrating it is for her to not be able to tell us why she is so upset.

Incredibly Blessed

There were moments throughout my life that I wasn't sure if I would ever hear these words. I am incredibly blessed to have these 2 beautiful children. I am a mother through the Miracle of Adoption. These kiddos were placed in our home by 2 loving Birth Moms and I am lucky to have been CHOSEN to be their MOMMA! There are moments of being a mom that are extremely frustrating I'm not going to lie. It is the hardest job I have ever done or will ever do. But these kids bring more JOY, LOVE and LAUGHTER into our home and I thank Heavenly Father everyday for allowing me and trusting me to raise these most precious little ones.

Round 2 or 3 or 4

Well I've actually lost count of the times Henslee has been tested for SOMETHING? After finally getting  a hold of her Geneticist after 3 weeks of calling to talk to her regarding Henslee's last blood test,  she ordered more tests! I was a bit frustrated at the beginning of the call because I asked her if we had done the COMPLETE test for Rett Syndrome ( I already knew we hadn't because of an amazing women at Katie's Clinic for Rett Syndrome that I was able to fax the results to her) Henslee's Geneticist went on to tell me that she would rather not put Henslee through more testing ( which I agree) but would like to see her get into some Therapies and make sure we were diligent in taking her to them and to see her back in 6 months!!!! WOW Mommy mode kicked in. I then responded by telling her Henslee has been in Occupational, Speech, Physical and Play Therapy since she was 15 months old! Attending sometimes 2-4  of them per week . I can't count the times of driving her, carrying both kids in,  making Nixon sit on my lap while his sister is "playing" at therapy.  She then asked me to "remind" her of Henslee. Describe our concerns. Mommy mode kicked in again..........I would be HAPPY to remind you of HENSLEE! I went on to tell her that she has no speech very little babbling. She is now starting to say mama and baba, :) She is at a 6 month old level with her fine motor skills and around 1 yr old with her Gross motor skills.  She is walking actually really well, almost running at times ( but her walking has been referred to as "Frankenstein" walking) because of her arms and wide stance. She has extremely busy hands and arms. Constantly clapping/ tapping/ putting them in her mouth. Not sleeping well. We hear her up hours at a time bouncy and laughing throughout the night. She is grinding her teeth like crazy and we have started with uncontrollable fits for hours at a time. But other than those few hours Henslee has a very happy, happy demeanor.  After telling her all about Henslee she then said it would be very important to FINISH the rest of the RETT SYNDROME testing and Also finish the ANGELMEN SYNDROME testing. My response to her was we already did Angelmen testing over a year ago. She then went on to tell me that Henslee's Neurologist only ordered it for the 1st test and there was another more specific test that could be done. Wow. The crazy thing is that when we were testing Henslee for that over a year ago we were also shocked when it came back negative. It also seemed to fit Henslee but when the Neurologist called and said she didn't test positive for Angelemen and left it at that we haven't thought twice about it. Not knowing there were more test that could diagnose Angelemen. After Researching it again Jesse and I feel like Henslee fits a lot of the criteria for Diagnosing Angelmen's as well. Both Rett's and Angelmen have a lot of similar characteristic.  So on Wednesday of last week I took Henslee in once again for more Blood tests testing for both Rett Syndrome and also Angelmen Syndrome.

While waiting for our turn in the lab Henslee walked/ran the halls of the hospital :) :) :) Once again she did amazing. She sat very still while a lab tech helped hold her one arm still and while I held the other arm still. She had her blood drawn and for the first time she made a little noise letting us know that , THIS SUCKS. That it hurts. I was happy/very sad that she was telling me that she didn't like this. Every other time she has had her blood drawn she has not cried, wiggled, moved, nothing to show us of her discomfort. But this time she did. She is progressing and I am so Thankful for that. I hope we find answers. But I guess if we don't we will love on this little girl the same as we do everyday and hopefully in the future get those answers we are looking for.

Test results are in

Last week I received a call from Henslee's Geneticist.  My heart raced as I listened to the message she left me telling me that the Test Results came back NORMAL and to call her back if I had any questions........................UM..............???? Well  I am mad, sad, confused, frustrated, shocked, incredibly shocked. Are you surprised at my feelings regarding the possible diagnosis for my daughter??  I had prepared myself  all month for the phone call telling me my daughter had Rett Syndrome. Because after all the research, endless nights reading about Rett Syndrome, Blog stalking of girls with Rett Syndrome, meeting a beautiful little girl with Rett Syndrome and watching videos of girls with Rett Syndrome, Jesse and I both feel very strongly about this being Henslee's diagnosis. Do I want it to be Rett Syndrome? No, No, NO!! Nobody in their right mind would ever wish this upon their worst enemy. I am beyond crushed, incredibly sad and my heart is just breaking thinking that this is what Henslee has to live with for her beautiful little life here on this earth. I can see everyday how much this affects her. But do I think this is what it is??  Absolutely.  I need answers. I need to know the very best way to handle the new "issues" that are thrown at Henslee every day!! I need to know those things I need to be prepared for. I need to know what Medical treatment Henslee needs or could need in the future. I need HELP! I know a diagnosis can at least give me some direction to go in.  A  small percentage of girls with Rett syndrome are clinically  diagnosed. Which means the Dr diagnoses off of  symptoms vs. blood test. We are scheduled in December with an amazing clinic that specializes in Rett Syndrome called  Katies Clinic We hope that they will be able to give us some much needed answers. I love my little Miss more than words can say. I need those answers so I can be the best mom I can be to her. So we will wait again. Try to be patient again. Try to learn and understand the things Henslee is dealing with. Throughout my life and throughout the different challenges Jesse and I have faced including infertility, adoption and now these current struggles. I feel like I have had multiple times in my life where I could learn patience and maybe I have a little bit. But wow more than ever I am needing to learn this most incredible Virtue.


Life is full of difficulties, some minor and others of a more serious nature. There seems to be an unending supply of challenges for one and all. Our problem is that we often expect instantaneous solutions to such challenges, forgetting that frequently the heavenly virtue of patience is required.
- Pres. Thomas S Monson

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