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