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I am the Momma of 8 children. Seven here on earth and 1 precious little Angel in Heaven. My children range in age from 2 months to 25 years. My 6 year old was born with a laundry list of complex medical conditions. He has Trisomy 21 (Down Syndrome), a rare brain malformation, which resulted from a mutation of the PAX-6 gene, bilateral anophthalmia, which means that he was born without any eyes, so he is totally blind. At the age of 2 1/2 months old he had to have a tracheostomy to help aid in his breathing. He is hearing impaired, with normal hearing in his left ear and has profound deafness in his right. At 3 1/2 years he had surgery to have a Mic-Key button placed in his stomach (feeding Tube), which is mainly used to give him his medications. He also has insulin dependant diabetes and wears an insulin pump, which gives him a continuous dose of insulin. Even with his many dis"abilities," including being globally developmentally delayed, he has accomplished more than anyone would have ever believed that he could. Join us in our journey living with a Dis"Abled" child....

Tuesday, September 22, 2009

Motherly Love To The Extreme!

Want to guess how many strands of spaghetti there is in a 8oz box? There are approximately 280 strands. A 2oz (! serving) of dry spaghetti has approximately 70 strands of spaghetti. How would I know this? And why would I want to know? Yes, I counted an entire 8oz box of spaghetti, peice by piece. Talk about Motherly Love to the Extreme!

Timmy is a very brittle diabetic. Every carbohydrate that he eats has to be counted. If we should happen to miscount somewhere, his blood glucose levels will either skyrocket or plummet. Due to his genetic disorder his cholesterol is extremely elevated. A typical meal for Timmy consists of a Chef Boyardee meal or a Hormel Dinner with a stage 2-3 baby food veggie and fruit. Both of these have tons of sodium, fat and cholesterol. We have been using these meals, because it makes mealtime easier. The total of carbohydrates are printed right on the back of the packaging. So simple. No having to try to figure out how many carbs there is in a particular food (not all brands of foods are listed in are Carbohydrate book) or having to guess when food are mixed during preparation.

We have decided to take on the task and challenge of preparing Timmy's meals, in hopes of getting his cholesterol level better under control. So being the Loving, Caring, Dedicated Mother that I am I took the time, instead of just guessing, to count every single strand of spaghetti tonight, so that Timmy could have spaghetti with the rest of the family.

Or maybe we should just let Emily manage Timmy's diabetes......
She would stop feeding him. According to her, this makes him waaay to sweet. And give him enormous amounts of insulin, because this doesn't make him sweet anymore. Hmm, now that I think about it, I can see why she wouldn't want him too sweet. Having him not to be sweet, she would be able to prove that Timmy IS the one who is always doing something that he isn't suppose to, like jumping on the bed, then onto the floor! Or the one who actually snuck that 2nd popsickle out of the freezer and gave it to her! Can you feel the love?

Tuesday, September 15, 2009

Teaching Peers About Their Special Friends

Timmy has been in school now for 8 weeks. (He attends year round school). My experience with our local school system goes back almost 20 years. I have to say, I'm veeery impressed with the staff at the school at which Timmy attends. Timmy's teacher AWESOME! Mrs. Bishop believes that it is very improtant to help the other students in the school to understand how their special friends learn and what technigues are used to help them learn.

Each week or so a different class, from Kindergarteners thru fifth graders come into Mrs. Biships class to work along side and help out their special friends. It is truly amazing to watch these "typical" children being so caring, patient, understanding and eager to help, while learning about their special friends. It is so heart warming to see these children bonding and connecting with their special friends, through simple activities like pushing their wheelchair to the lunch room, reading them a story, working on craft activities or helping Mrs. Bishop put together their folders that are sent home nightly.

Here is a video that Mrs. Bishop put together with the help of her 2 oldest children, who also attend the same school as Timmy. Mrs. Bishop uses this video to help the younger children to understand exactly what goes on in her classroom each day and how her students learn.

Enjoy!

Saturday, September 12, 2009

A Typical Morning

A typical morning Monday-Friday at our house starts at 5:30am, IF we all are lucky and Timmy has slept through the night. I get out of bed, splash my face with cold water to wake myself up, grab my cell phone and head downstairs. I get Timmy's medications and breakfast ready. By this time Emily has woken up and is demanding to watch cartoons. I explain to her for the millionth time that there will be no cartoons until she is dressed for the day. She starts crying and goes running to her dad, whom she knows will give in and turn on the T.V for her. I go in and change Timmy's diaper and check his blood glucose level. At about 6:15am Floyd finally comes downstairs. Sometimes Floyd will feed Timmy and I'll dress Emily and other times I'll feed Timmy and Floyd will dress Emily. About 6:40am in walks Zach. Typically weekday mornings are uneventful for us.

On Saturdays and Sundays if Timmy is a good boy and sleeps all night, we all are able to sleep in until 7:00am, at which time one of Timmy's nurses arrives to help out.

Here is how an all but typical Saturday morning plays out for us. I wake up a bit before 7:00am and go unlock the door so that the nurse can gain enterance at 7:00am. I splash my face with cold water to wake myself up. Emily's and Zach's radar has kicked in and they both have sensed that someone in the house is awake. They both get up. Let the sibbling rivalry begin! There is a race to the TV in the family room.

Zach: I made it here first, so we have to watch what I want this morning.
Wmily: NO, I want to watch 72.
Zach: Emily, you will like what I want to watch. Look, doesn't it look interesting?
Emily: Nooooo, I want to watch 72!
Zach: But Emily, I was here first.
Emily: MOMMY, Zach want let me watch TV!

Floyd by now has made his way downstairs and is starting a pot of coffee. THANK GOODNESS! While Floyd fixes us both a cup of coffee, I explain to both Emily and Zach IF they can't find something that they both can agree on to watch, we all will just watch the morning news or I could just turn the TV off. As I take Emily to her room to help her get dressed for the day, Zach retrieves the remote control from atop of the TV. The batteries are dead, so he goes on a battery hunt. He finds 2 AA batteries in Timmy's room, which he uses ot replace the dead batteries. Emily is now dressed and runs back into the family room.

Emily: MOM Zach want let me watch TV.
Zach: I'm trying to fix the remote control.
Emily: Why?
Zach: Because, the batteries are dead.
Emily: Why?
Zach: Because you looked at it.
Emily: No I didn't! You did!
Emily: Can I help? I wanna help.
Zach: No, Emily i can do this by myself.
Emily: (Runs into the kitchen where I am) Mom, Zach want let me have the control!

I'm sipping my coffee and have just popped myself a pop tart into the toaster.

Emily: I want some pop tarts.
Mom: You want eat them.
Emily: Yes I will. You'll see.
Mom: How about some hash browns or some cereal?
Emily: Nooo, I want some pop tarts.
Mom: Ok, but you BETTER eat them. At least 1 out of the pack anyway.
Emily: I will. (She opens the pack of pop tarts)

Enter Zach into the kitchen as Emily takes her pack of pop tarts and heads into the family room.

Zach: Mom these batteries are dead also.
Mom: Where did you find those batteries?
Zach: I got them from Tim's room.
Enter Emily
Emily: I want my pop tarts heated too.
Mom: Ok. let me have them. (I pop both pop tarts into the toaster)
Mom: Those batteries won't work in the remote control.
Zach: Why not?
Emily: I want to see.
Mom: They aren't the right kind of batteries.
Zach: Yes they are. They both are AA's.
Emily: MOVE I WANT TO SEE.
Mom: See what Emily?
Emily: I want to see my pop tarts.
Zach: I'm sure I have them in correctly
Emily: Moooove Zachary! You are standing in MY SPOT!
Zach: Your spot?
Mom: They won't work Zach. They are a different type of battery.
Zach: What? A different type?
Emily: (Extremely whiney) Mooommy Zachary won't move.
Mom: Just a minute Emily
Emily: BUT I WANT TO SEE MY POP TARTS.
The nurse and Timmy leave the kitchen and Emily follows
Mom: The batteries you just put into the remote are lithum batteries, not alkline.
Zach: Soooo
Mom: They won't work. (We have a brief science lesson on the different types of batteries.)
Zach runs upstairs to hunt for more batteries that will work in the remote control
Mom: (Yells) Emily your pop tarts are ready.
Emily: (comes running back into the kitchen) I don't want them.
Mom: Be careful they are hot.
Emily: I don't want them.
Mom: You promised that you would eat at least 1.
Emily: I changed my mind. I'm not hungry now.
Mom: Would you like some milk or juice to drink with your pop tarts?
Emily: I didn't see them, so I don't want them.
Mom: I'll place them here, so when you are ready to eat them you can come and get them.
Emily runs back into Timmy's room. It wasn't that she didn't want them or that she had changed her mind. She was afraid that she was going to miss out on something fun going on in Timmy's room.
Zach: Emily if you don't eat your pop tarts, I will.
Emily: Ok
Emily comes immediately running back into the family room and hops into the rocking chair. Zach has taken Emily's pop tarts to the family room and is sits down to watching TV.
Emily: I want to watch TV.
Zach: You were in Timmy's room.
Emily: But I was here first!
Zach: No you weren't, you left.
Emily: Mommy Zach want let me watch TV. I want my pop tarts.
Zach: You said that I could have them.
Mom: Zach, give Emily 1 of the pop tarts and I or you can fix you another pack.
Zach: Here Emily (Offers Emily 1 of the pop tarts)
Emily: I don't want it cause you touched it!
Mom: Zach, go ahead and eat both pop tarts. She doesn't really want them.

If it wasn't for this face and his contageous laughter, I would be in a psych ward somewhere! This has been a morning test of the PNS (Parent Nervous System). In the event of an actual emergency or nervous breakdown, your adrenal system would be sure to function properly. This has only been a test.

Friday, September 11, 2009

8 Years ago on 9/11/2001

Eight years ago on 9/11/01, it was a beautiful, clear morning. The temperature was very comfortable, in the mid 60's with an expected high temperature in the low to mid 80's. A peaceful morning, like this morning.

I had gotten up, made my then 5 year old breakfast and walked him to meet the school bus. By 7:40am Zach was on his way to school for his 3rd week of Kindergarten. Being the morning was so pleasant, I decided to take a walk to the pharmacy to pick up my prescriptions, but first I had some things to do around the house. I washed up the breakfast dishes, started a load of laundry and just tidied up the rest of the house a bit, picking up and putting things in their proper place.

At about 8:45am Floyd and I left home to walk the 15 minutes or so to the pharmacy. While we were in the pharmacy, the DJ came on the radio, which was being broadcast throughout the small pharmacy and announced that a plane had crashed into the World Trade Center. Having grown up listening to this same DJ day after day for over 15 years, I knew that he had a sick sense of humor sometimes, so my initial thought was "Yeah Right! What a sick joke guy." Not long after the DJ made the announcement all of the phones in the pharmacy started to ring. I remember over hearing the cashier asking the person whom she was speaking with on the phone to please bring over her 13in. TV, so that they (all of the employees at the pharmacy) could see and keep up with the news reports. After paying for my prescriptions, Floyd and I rushed home. We arrived home just in time to see the replay of the 2nd WTC tower being crashed into.
Even after seeing the news reports, with the replays of the planes crashing into the WTC's, I was in shock and disbelief. Why was this happening? How could something so tragic and horrific happen in our Country? A Country of Opportunity, Dreams come true and Freedom? Who would be so selfish and have such ill regard for human life and be so uncaring to do something like this? I felt sick at my stomach. My heart ached for ALL of those who so innociently lost their lives. And for the families who lost their loved one, who will have to live each passing day with such horrific memories. And for the friendships which had been shattered through death by such tragedy. With the magnitude of the destruction, my mind wasn't able to forsee the out pouring of generousity that was to come from strangers throughout the entire country, putting their differences aside while helping to rebuild and mend so many broken hearts.


My thoughts and prayers go out to all of those who lost their lives 8 years ago, to the families and friends who lost that special friend or family member and to ALL of the HEROES of 9/11/01! May God Bless you all!


What were you doing on September 11, 2001?

Tuesday, September 8, 2009

Official Start of School


Unfortunately I didn't get a picture this morning of Emily climbing aboard the "Big Girl" school bus. I had a question for the bus driver and Emily was soooo excited that she just pushed pass me and climbed on the bus. This will be Emily's first full week of Pre-K. Last week she only attended 1 day at "Big Girl" school. Our school district has what is called staggered enrollment, where only a few Pre-K and Kindergarten children attend school each day during the first week of school. Mrs. Maxey sends home a daily report and today's report states that Emily had a GREAT DAY! Emily says that her favorite part of the day was going outside to play on the playground.


Here are a few pictures that Mrs Maxey took on Sept. 2nd. and today, of the children learning while at play together. Sorry the pictures aren't very clear. The teacher uploaded them to a computer and printed them out for all of the parents.

Thursday, September 3, 2009

First Day Of Pre-K

Our baby is no longer a baby. She is now a big girl. Emily started her 1st day of Pre-K yesterday. She is so excited. Emily has been attending ChildCare Network for the past 1 1/2 years. ChildCare Network is a preschool, but is run more like a daycare. The children who are enrolled are from 6 weeks to 12 years of age. Emily is looking so forward to being able to go to what she calls "Big Girl School." All of the children at "Big Girl School" will be 4-5 years. I'm not sure which Emily is looking forward to the most, the atmosphere of the "Big Girl School" or being able to ride the "Big Girl School Bus?" We had a hard time deciding whether we should leave Emily at ChildCare Network for Pre-K or switch her to our public school systems Pre-K program. After much thought and consideration, we decided that Emily would benefit more from our local public school systems Pre-K academic program. Timmy attended the same Pre-K program last year. Aside from Timmy's special Education class, we were very impressed by the other teachers and staff members at the Pre-K Center. Hopefully Emily's experience will surpass her brothers. More picture of the 1st. day of riding the "Big Girl Bus" to come soon.

This is Emily and her Pre-K teacher, Mrs. Maxey. The teacher assistance is Mrs. Rice. Notice the way Mrs. Maxey got down to Emily's level when speaking to her? I liked this. I'm sure that this gesture made Emily feel more at ease and not so intimidated.
Hand washing to keep the germs away. Being that there is the scare of the H1N1 flu, this too is a BIG plus.

Princess Silliness. I think this was her way of telling me to go away! Besides, the teacher had guided her to one of her all time favorite activities, coloring.
HAPPY 24th BIRTHDAY Linnie The Pooh (Gwendolynn)!!!!! I bet you thought that MaMa forgot? Not a chance girlie. You kept me in agony for 18hrs 14mins 24 years ago, on Labor Day. And you haven't stopped a day since. But I still Love Ya!





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