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.