Grandma Benny

That is what I called my Grandma when I was little. I remember asking Mom if we could go down to Grandma Benny's? Grandma and I had alot of fun together....camping on Cranberry, our trips to Williamsburg, VA to see Tim, hanging out together, taking her to the dr, fixing her hair, celebrating many of her birthdays, etc. Now after 96 1/2 years my Grandma Benny doesn't remember me......dementia has set in and she comes and goes, not sure what she talking about and the signs of old age. We had seen this over the past few years, but I always thought Grandma would outlive us all, she was to stubborn to do other wise. Now, her mind is gone...her body is the same, her face, her eyes, her hands, but when she talks, it's not Grandma. I called her the other night and she talked and I thought good she remembers me, then she asked...."who is this?" I cried, because at that point I knew I had lost my Grandma Benny. I had planned to take my Mom and SPencer to Florida for spring break, but now, I am led to the mountains of WV for a visit with my Grandma...she may not remember me, depending on the day. My heart breaks for my Mom, it is so hard to see her Mom, the one that she has had for 75 years, say horrible things to you, things that hurt you, have no recall of things and search for things that are long gone. It is hard to see someone you love act differently, I can't even begin to imagine. So in ending this post is a tribute to my Grandma Benny, remembering all the good times shared and a tribute to my Mom for being a strong lady! I love you both with all my heart!

Sleep Study!

As I sit here in the quiet of my classroom.....my assistances are helping out by giving me 30 minutes......I reflect back on last night.....I'll call it the "night from HELL!" Wish I had a copy of the pic they took of him, but I don't so use your imagination. First Mike and I are loudly discussing in the way to the hospital, then we hit a terrible storm on 85 where everyone thinks they can still drive 70 in rain that is blowing sideways, we pull into the hospital lot, Spencer starts with the "....um, um, um..." sound he makes when he knows we are entering the medical community, make our way to the 5th floor, he starts flopping like a wet dishrag, brush teeth, say prayers, sing song, read "Goodnight Moon", he's out! THEN......enter the sleep tech, who was very nice and patient with him I may add, but she started for get it, he's flipping, flopping, rubbing off wires, pulling off cords, working his toe to get the SAT monitor off, you name it. Dad and the tech gave up, I stayed out thinking it would be best. Then we let him get back into sleep again and here we go....3 of us now. The SAT monitor is attached, little toe working really hard to get it off....fighting us all the way, but we keep putting things on because at this point I know he'll wake up period if we touch him while he sleeps......2 hours of hooking up probes, wires, monitors, etc.....and finally everything is attached. For these 2 hours I'm laying on the bottom part of his body holding his legs, waist and left arm secure....Dad has the head and right side. OK....we're done, but now his is sticking his Gene Simmons tongue out trying to lick off the things attached to his face....let it never be said my son does not have problem solving skills, because he CAN figure his way out of things! The tech leaves so we can calm Spencer down and hopefully get him asleep. This takes much longer than it should, about 45 minutes. He still is fighting and by golly he's a strong little man, scares me when I think about him getting older, so finally he starts to fade out. In a last ditch effort, he raises his head in a swift jerk and POW!!! head butts Daddy....I heard the crackle in the nose. I sent Dad out so I could hopefully finish calming and putting to sleep. I did and for about 2 hours he slept, then started waking and pulling things off, removing everything. Around 3 the tech came in to where I was sleeping and asked for my help...he was in a tangled mess. As she was taking the leads off she asked if we could try and put them on again. I asked if she had any data when he was asleep and she said yes for about 2 hours. "Fine with me" I said! Dr. Gualt can live with that because I refuse to wrestle with him to attached all the hundreds of lines again....by that time it would have been 5 and there is no way he would have went to sleep. She agreed and said that was fine, so @ 3:00am we're headed up 85 home. HOME SWEET HOME!!!! We got in went to the potty, ate a cereal bar and drank some milk and then off to bed for the remaider of the night @ 4:30am. At 5am, my freakin' alarms go off.....so I'm up and off to work....no day off for me since I'm out of days and can never seem to catch up with the drs we see, but that's ok. Dad is home with Spencer, they are relaxing and enjoying the day and I'm here @ school fighting to keep my head above water, but.........Edward keeps me going!!!!!! Thank you fantasy world!!!

FB & Edward have a hold on me!

I swore I wouldn't get into the Twilight series, but lo and behold the media specialists at my school hooked me hook, line and sinker.....already finished Twilight in a week and started on New Moon Thurs and over 1/2 through it....so hooked and Mike can't believe I'm reading them! Besides Edward, FB(facebook) has me hooked also. I can get on there for hours and read about my friends, updates, the groups, the quizzes, etc....then of course there is 24 on Fox that I absolutely love and I really think Jack Bauer could take care of all of our problems with terrorists!

OK, so much for my world of internet, Edward and tv....more importantly, Spencer goes in Wed night for a sleep study at G'ville Memorial. Hopefully this will give us and the dr insight as to why he is having sleep problems, waking through the night, sleepy during the day, some behaviors, anxiety, weight gain, sensory issues, etc. I really like this young sleep dr who talked alot about down syndrome in children and that sleep is a big concern especially when it effects the heart. He seems to truely understand Down Syndrome and doesn't link all children who have Down Syndrome in the same catergory like "these kids". I am anxious wondering how Spencer will handle being hooked up to all those wires, stickers and strapped down, but we'll see. He amazes me lately how cooperative he is with some people who are patient with him, not Mommie though 'cause the more he doesn't cooperate the more upset I get, thus, we'll let others handle hooking him up. Make sense?! Say a prayer or keep a good thought for us tomorrow night as we go through this sleep study. I'll hopefully post this weekend as to what they found out with the sleep study. Along with the study I have to keep a sleep log for 30 days and we see Dr. Gault on March 5 to see what route we will take.......

Meanwhile I hope you all have a HAPPY VALENTINE'S DAY!!!!