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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....

Thursday, March 31, 2011

Hi-Ho, Hi-Ho Off To Grandma's They Go

 



The kids are suppose to start their Spring Break on Friday, April 1st. We decided to keep them out of school for 2 days, so that they could go to IL with Floyd to visit Grandma. Timmy hasn't been to visit Grandma, since January 2008.  He is so excited. And is looking forward to being able to visit with his cousins once again.

Being that Timmy is a special needs child and requires a great deal of extra items when travelling, food, diapers, diabetic supplies, medications. I always feel as though I'm forgetting to pack something. It isn't until he has been gone from home a few days before this feeling go away.

In the past when we have travelled with Timmy we packed all of the food that he would need for our entire trip. When Floyd took Nate to visit Grandma last month, it was brought to his attention by an Amtrek employee that the chef who prepares the on board meals could prepare all of Timmy's meals. A few days ago, Floyd had a long phone conversation with the Chef . The Chef felt very positive that he would be able to prepare Timmy's meals as he needs them. So Floyd agreed to let him try. Even though this service was put into place, being the well prepared mommy that I am, I went ahead and packed Timmy some food for his trip, just in case. If the Chef does get the consistancy of Timmy's meals correct, travelling with Timmy will be a breeze in the future. Our bags will be a lot lighter.

We travel by Amtrek ALOT. When travelling with Timmy on the airlines, the airport employees haven't been very acommidating or helpful. And getting Timmy through security with all of his necessary medications and supplies has been a NIGHTMARE!

Here are a couple of pictures of Timmy and Nate together today before they left for the train station. Nate LOVES his brother. Well, Timmy LOVES his little brother, especially when he is crying. Timmy thinks that Nate crying is hysterically funny. Maybe he knows that most of the time Nate's tears are crocodile tears. I swear sometimes it seems that these two have their own form of communication. Who knows. And they sure won't tell their secret.


Sunday, March 27, 2011

Sunday School Podcast - The Police Station and More

Timmy's ear tube(s) came out a little over a week ago. What was to follow? Of course, an ear infection in his left ear, his good ear.

After 3 days of being on an antibotic, Timmy spikes a temperature of 102.5 on Thursday Morning. I gave him a dose of Motrin, which brought the temperature down nicely. All day Timmy didn't spike a temperature. He was his smiling, happy, laughing self. In the early evening Timmy spiked another Temperature of 102.7. He was given a dose of Motrin, which brought  the temperature down. Timmy showed no other sign of illness. His ear(s) aren't draining and they don't look like they may be inflamed.

Could this spike in temperature be a result of Daddy giving Timmy his 2nd 4mg. dose of Zanaflex, to try to help Timmy get back to sleep, following a middle of the night diaper change? I seem to recall something like this occuring awhile back, but can't remember if it was during an ear infection or if an illness  followed the temperature spike.

I have my fingers crossed that the spike in temperature isn't a result of the antibotic masking some underlying horrible illness, which will flare up once the antibotic regiment is complete.

Unfortunately, being Timmy had a temperature he had to miss the field trip on Thursday to the Police Station. There were other awesome pictures of Timmy that were taken earlier in the week.

So enjoy the Podcast.

Wednesday, March 23, 2011

Wow, You Are 8 Months Old

                        
Wow, you are 8 months old today! Where has the time gone? This past month was filled with great adventures and lots of development.

You took your very first Amtrek train ride to IL to visit grandma. Whew, we both survived being away from each other for 3 long weeks. While Daddy loaded your stroller and the luggage into the car, you and I spent the time hugging, kissing, laughing together and getting reaquainted. It felt sooo good to have you back in my arms. 

You really enjoyed your visit with Grandma and your cousin. While visiting Grandma, daddy gave you Enfamil Soy formula and fed you baby food. You definately missed Mommy's milk. Alomst a week, you refused at eat or drink anything, except Mommy's milk.

Nate 7 months. Cousin Declan 3 months. 


Your personality is still flurishing. Along with the happy, loving baby, full of laughter, you are now very demanding and opinionated. Things in your life "have" to go your way and they "must" be done on your schedule, not a seconds delay. If your wants/needs aren't met immediately, you perform a lung capacity test, which sends brother Timmy into hysterical laughter.



Mommy's Muffin Man is no longer a muffin. He has grown into Mommy's Natie Cake-a-roo. Your all time favorite daily activity is jumping/bouncing. There have been days in which I have questioned your genetic makeup. Wondering if it were possibly that some of your ancestors may have been kangaroos.

You are now on the move! You have mastered Comando crawling. If you want something, it takes only seconds for you to get there. Mommy's cell phone is a BIG favorite. There is sometimes a game of Tug-a-War, if I'm holding you and the phone rings. Or if you see the phone in my hand, you come speed crawlong to try to get it from me. I just hope that your interest in cell phones isn't a sign of what is to come. But you do have some of your Daddy's genes. And your Daddy is a talker!


You are playing more and more on your own. Exploring toys. You also rally enjoy being read to. This crinkly book is one of your favorite toys.

You are testing your muscles and exploring just how your body works.. You are starting out small, with trying to pull up to stand. You still absolutely refuse to sit!

You are fascinated with anything that has lights. And your new found interest is a mirror. "Mirror, Mirror In My Hand, Who's The Fairest Little Boy In the Land?" Natie Cake-a-roo, of course!

Your all time favorite place in the entire house is Timmy's room. More accurate, is Timmy's bed. If someone doesn't take you into see Timmy after you have your breakfast in the mornings, you start fussing and won't stop until you see your brother. You repeat this in the evenings. You insist on going into Timmy's room to see him get dressed after his bath. Mrs. Dottie, after Timmy's bedtime routine has been completed, she sometimes reads a book to Timmy and you really enjoy this time together with Timmy.

Since your return home from Grandma's house, your refuse to take a bath in your baby bathtub. You demand to be placed into the Big Boy bathtub. You perfer that you lotion following your bath be slightly heated before applying it to your body. Warming the lotion in our hands just won't do.

I hate that I had to stop our "special" time together. But now that you have teeth, you insisted on using Mommy as a teether. Ouch!  Even though our "special" time together is no more. my favorite time of the day is still holding you while you take your last bottle of pumped breast milk before bed. Your sweet baby smell. Your soft quiet breathing as you drift off to sleep. Watching the expressions on your face while you sleep. Your warm body against mine.

                                        I Love you Natie Cake-a-roo!

Saturday, March 19, 2011

Tiles For Smiles

Tiles For Smiles is a project hosted by NHRMC (New Hanover Regional Medical Center) in conjunction with Monteith Construction. Children from the community and their family, who have had extended stays at NHRMC, were invited to NHRMC to paint tiles. The ceiling tiles will be placed throughout the Women's and Children's Hospital, the Pediatric Speciality Clinic and other areas of the hospital in which a child may visit or stay. These tiles are to help make the hospital and clinic more child friendly and not so scary.

March 14th marked Timmy's 7th year discharge anniversary from the NICU after 4 1/2 long months.

This year Timmy's heart wasn't much into painting the ceiling tile. Timmy fell asleep on the way to the hospital, so his nap was interrupted. The event was held in the new Women's and Children's Hospital lobby this year. The room had an echo, which Timmy doesn't like. The echo is worse when children are talking loudly or crying. This upset Timmy so we had to leave early. Emily had fun though.  The entertainment this year included The Panther's Cheerleaders, a clown, stories read by Two Sisters Bookery, and dancers from Danzquest. There was also a booth set up for face painting, hair styling and fingernail painting.

The theme throughout the hospital is Ocean scenery. Timmy chose to paint a crab. Look at him. Even though his heart wasn't completely into the painting, he did a GREAT job holding the paint brush, while Merry held his wrist and guided his hand/arm to help him paint.











Emily chose to paint a Dolphin. She did a Wonderful job as well. Emily isn't a creative or artistic child. Coloring and painting are activities, which Emily finds to be too restrictive. She had much rather be outside running and playing, swinging or riding her scooter.





Below are a few pictures of our little Diva after she had her face painted, fingernails painted and glitter sprayed into her hair.





 

Sunday, March 6, 2011

Sunday's - School Podcast - Dr. Seuss Week

Celebrating Theodor Seuss Geisel's  (a.k.a Dr. Seuss) birthday.

Saturday, March 5, 2011

Back Where He Belongs

I'm sooo  Happy! My Natie Cake is FINALLY back home! It took almost 2 weeks before any of us stopped looking into the Pack-N-Play, which is in the living room and where Natie Cake spend some of his time. When I would pass by and look into the Pack-N-Play, there were time in which I wished very hard that I could will him to reappear. I so missed his clinginess, his smile and hearing his laughter.

We spent over 10 minutes laughing together while Dad placed their belongings into the trunk of the car.

Now he is safe and sound, back where he belongs. In my arms and safely tucked into his own bed.

Thursday, March 3, 2011

SNEETCHES - By Dr. Seuss

Happy Birthday Dr. Seuss! (a.k.a Theodor Seuss Geisel) Well, actually his birthday was yesterday. Some of the classes at Emily and Timmy's school is having a week long celebration of Dr. Seuss' birthday. This morning I, PaPa and MiMi went to see Emily's Kindergarten class preformance of the story SNEETCHES. It was waaay too cute!

Here are some pictures and a video. Enjoy.






Don't you agree, They are just the CUTEST group of Kindergarteners Ever!

Wednesday, March 2, 2011

End The "R Word" Day

I am sure alot of you are already aware that today is "spread the word to end the word" day. Here is the website if you don't already know about this or want to know more and get more involved in the future:
"R Word"


Also in honor of this day, I wanted to share one of the most powerful essays I've read regarding the treatment and rights of people with intellectual disability. The author is Dave Hingsburger and you can find his blog is: Dave Hingsburger

Monday, August 23, 2010.
             The People Who 'ARE', By Dave Hingsburger

It's in the press again. I search to find out the context of the word. I see
debates all over the web, people bemoaning the 'politically correct' and the 'word police' and making ridiculous claims about having to ban the concept of a 'fire retardant'. Last I looked there's never been a protest about product that protect from fire. Last I looked there's only ever been
protests about the use of a word that demeans a group of people.

No matter what the fearless defenders of freedom of speech say, there is a huge difference between a word to describe something that slows fire and someone who learns differently. There's a huge difference between a thing and a person - but, no, maybe not. After reading their diatribes regarding their freedom to spit out hurtful words, they may, really, not see people with disabilities as fully human with a human heart capable human hurt.

People mock the concept of respectful language regarding disability. People make odd arguments about the latest gaffe by ... no, I won't say her name here ... they say 'she was saying that of herself not anyone else' - um, so?
The word she used was one referring, not to a commercial product, but to an oppressed minority. Yet the debate rages on and the fierceness of the attack by those who are proponents of the use of hate language are both hysterical and who often purposely miss the point. One wonders what's at stake - their personal liberty to hurt others?

It's time to recognize that the 'R' word is an attack against those people
with intellectual disabilities 'are', it is an attack against the group that they belong to. It is like other words that exist to slur an entire people, unacceptable. The fact that people do not see the seriousness of the
word and the attack it represents is simply a result of the fact that they
do not take the 'people' who wear that label seriously. The concerns of
those with intellectual disabilities have always been diminished and
trivialized. There is a sneaking suspicion that they 'don't understand, poor
dears', that they 'miss the point, little lambs' so therefore their anger need not be feared as justified.

The people who 'ARE' what the 'R' word refers to have a long history. They have been torn from families and cast into institutions. They have been beaten, hosed down, over medicated, under nourished, sterilized, brutalized, victimized.

They have been held captive, have been enslaved, have had their being given over to the state. They are the group in society most likely to be physically, sexually and financially abused.

They are the group least likely to see justice, experience fair play, receive accommodation or support within the justice system.

They are the group most likely to be bullied, most likely to be tyrannized most likely to be the target of taunts.

They are the least likely to have their hurt taken seriously, physical hurt,
emotional hurt, spiritual hurt.

They are most likely to be ignored when they speak of pain, have their words diminished by an assumption of diminished capacity.

They are the least likely to ever be seen as equal, as equivalent and entirely whole.

They are the victim of some of the most widespread and pervasive prejudices imaginable.

They are those that the Nazi's thought unworthy of life, they are those
targeted by geneticists for non-existence, they need fear those who wear
black hats and those who wear white coats.

They are educated only under protest, they are included as a concession
rather than a right, they are neighbours only because petitions failed to
keep them out.

They are kept from the leadership of their own movement, they are ignored by the media, their stories are told to glorify Gods that they do not worship. That they are a 'people' is questioned even though they have a unique history, a unique voice, a unique perception of the world. That they are a 'community' is questioned even though they have commonality,

they have mutual goals, they have a collective vision of the future. That they are have a legitimate place at the table is questioned simply because no one's ever offered a seat.

They are a people.

 They ask for respect and receive pity. They ask for fair play and are offered charity They ask for justice and wipe spittle off their face.

They ask to silence words that brutalize them and their concerns are
trivialized. They ask to walk safely through their communities and yet bullies go unpunished.

They ask to participate fully and they are denied access and accommodation and acceptance.

And this is NOW.

This is the people who have walked the land of the long corridor, who have waited at the frontier of our bias to finally be here, now. They have
survived. They have come home. They have continued, silently and without fanfare, to take hold of freedom and live with dignity. They have given everything they have for what others take for granted. Their civil liberties are perceived as 'gifts' as 'tokens' and as 'charity'. Their rights are seen as privileges. Their movement is, as of yet, unacknowledged.

They are a people recently emancipated, new citizens, who are tentatively discovering their voice. It is a voice not yet heard. It is a voice not yet respected. It is a voice not yet understood. But it is speaking.
And when it is finally heard. The world will change.

The 'R' word is an attack on a people who know discrimination. Tremble when you say it. Because those who should know better will be held accountable to those who know best.

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