Monday, April 29, 2013

Events over the last week

We are still currently waiting on the test results waiting for the possible diagnosis of PITT-HOPKINS SYNDROME. To my knowledge there has not been an individual diagnosed with Pitt-Hopkins in Utah. While doing a little research, ok maybe a ton I came across another mom that was currently waiting for her 3 year old sons results testing for PTHS (Pitt-Hopkins Syndrome). We were able to chat on the phone and then get our kiddos together last week. Our kids had so many of the same characteristics!! The way they moved their bodies, the toys they liked, the reactions in different settings. They were extremely similar. It was so nice to meet a family that was in the EXACT situation we are in. They were a beautfiul family with a beautiful little boy. Their was a big difference in size. Miss Henslee had him by at least a foot :)

Henslee's new friend kept trying to hold her hand while they watched their favorite show. Baby signing time

That day we were also able to finally meet with a Sleep Specialist. After seeing the Geneticist in February and letting him know of our concerns with Henslee's sleep he referred us to a sleep specialist. We have been waiting 2 months to see her. Nothing is quick when it comes to specialists :) We started Henslee on a medication called Trazodone about 6 months ago. At the time she was up bouncing and laughing ALL throughout the night. A few months later she started waking up Screaming. So for the last few months sleeping has become a big issue in our family. We upped Henslee's dose of Trazodone which seemed to help for a few weeks. But it quickly turned back into screaming fits from 2-5 am. The Sleep specialist had us  up her dose of Trazodone again and also start her on a medication called Chlonodine. We have done that and the screaming fits have calmed down, but she still is not sleeping. We hear her up a few times a night but I will take that over the screaming any day, I'm sure Henslee would agree. The Sleep specialist was also concerned that Henslee may be having Frontal Lobe Seizures or absence seizures. She would like us to have a full 24 hr EEG and a perform a sleep study on her at that time, but she would like to get Henslee sleeping before we start that. I have always wondered if Henslee was having those types of seizures. When I think of the word Seizure my heart aches. I am scared and have been scared for the past few years of laying Henslee down at night and her having a seizure in the middle of the night. My hubby is great to remind me not to worry about things that have not happened.  Which it does give me a ton of comfort but I still have that fear deep down in my stomach.

Speaking of sleep, Henslee is still currently in a crib. An altered crib, done nicely by my husband to be able to accommodate our needs and Henslee's needs. But she can not be in a crib forever so I have been looking and asking around about a safe bed for Henslee. I have had multiple people refer me to this site. http://www.cyrdesigns.com/ 
for this bed.....

It looks like an extremely safe actually perfect bed for Henslee.  But for some reason as I look at this bed I just cry. This is not the kind of bed I envisioned putting my little girl to bed in each night. I imagined a beautiful day bed with a draping white canopy, with beautiful pink pillows and baby dolls laying on it. Miss Henslee would not be safe in a day bed with a draping white canopy. I can not have pillows in her bed because all she will do is bounce on her face on the pillow all night. I do not put baby dolls to bed with her because she does not like dolls! Sure this bed comes in different colors which would be nice,the blue part could be a pink,  I could possibly paint the wood a crisp white and add anything to dress it up on the outside but it still is not how I imagined it. There has been so many changes to "my plan" I'm not sure why this silly bed is causing me so much heart ache. I know it's just a bed. So for right now I think I might just be a little sad about this bed. But tomorrow I will wake up and go to my beautiful daughter who will be yelling for me to come get her out of her crib and it will all be fine. This bed will not matter because what matters is Henslee. I will trade any silly type of dream of a silly bed for the moments I get to have with my EXTREMELY SPECIAL DAUGHTER! I will remember that my plan is not HIS PLAN and HIS PLAN his far greater than anything I will or could in vision for myself.


2 comments:

  1. A great big ugh and a great big hug from New Hampshire. I totally get you on the bed thing. I honestly cried when we put an ugly medical looking rail on Leah's beautiful white bed. Like I said, ugh...and a hug.

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  2. Hi! My daughter's name is Gracie and she has Rett Syndrome as well. I'm facing the same decision right now concerning a bed. I can relate so much to your feelings. I haven't even decided on a bed and all I can think about is how I can make it look cute and decorate. Have you decided yet? If so, how is it working for Henslee. Any advice will be great. Thank you!

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