Mommy's Scurvy Pirate

Look At What I Can Do

I was going to save this wonderful milestone development for Nate's 9 month old update. I'm too excited. Just had to share my excitment and amazement with everyone.

Look at me! This is the first time that Nate has sat up for over a few minutes, without arching and falling backwards. I went through Timmy's toy bin and found some of Timmy's "infant" toys that I thought that Nate might enjoy playing with. This and a light - N - sounds musical piano are his two favs.

Nate can pull himself into the sitting position. He is still having some trouble getting into the sitting position while on the floor without anything to help assist him. He can also pull himself to stand. BUT of course, being I wanted him to do so, so that I could get it on camera, he refused. But pulled himself to stand once the camera had been turned off.

It took only 1 week for Nate to go from speed comando crawling to this.....

I'm a bit jealous. Upon Nate and Floyd's return from Grandma's. Nate has been saying DaDa. I'm looking forward to the day he will actually  recognize that "I" do exist aside from his DaDa.

It's amazing just how far Nate has come in such a short time with meeting his milestones. Some (not all) kiddos who have visual impairments are developmentally delayed. We are blessed to have such a WONDERFUL Physical Therapist working with Nate and Timmy. THANK YOU Kathleen!!!!  With her patience and persistance both of our kids have come a Long way developmentally. And Nate has been able to meet his gross motor milestones thus far right on schedule.

Sunday's School Podcast - Spring Fun

Timmy isn't in this podcast much. He only attended school 3 days this week. It is nice to be able to sse the other children in his class having fun while learning.

Hop Til You Drop

Now that Nate is 8 1/2 months old, most days he refuses to take even one short nap. Guess he is too afraid that he might miss something of great importance. So when he does fall asleep, I let him lay. In some cases, like the pictures show, I may be labelled a bad Mommy. But my motto is let sleeping baby's alone. Besides, if he is able to fall asleep in a compromising position, he must have been comfortable .

Isn't he just the sweetest!?!

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 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.

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!

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's - School Podcast - Dr. Seuss Week

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

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.

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!

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.

Sunday's School Podcast - Valentines Week

7 - Months Old

What's new this month? Well, you went on your 1st. out of state train trip to visit Grandma in IL. (Pictures to come soon. Hopefully daddy took some.)

Mommy introduced you to solid foods and juice this month. Your favorite foods are Squash, carrots and applesauce. Your least favorite foods are Green Beans and sweet potatoes. You love apple juice. Feeding you is so much fun. Eating is your second favorite activity, jumping/ bouncing is still your ALL time favorite.

You learned how to hold your own bottle. Well, you will hold your own bottle ONLY when it suits you. You prefer someone else to hold the bottle for you, that is soo much easier.

Your personality is still blossoming and you learn something new with each passing day. It is such a joy to watch you exploring the world aroudn you.

It fills my heart with joy to watch you grow. It also saddens me to realize that over a 1/2  a year has passed and that time is flying by. Soon you will no longer be Mommy's baby, but rather Mommy's little boy.





Sunday's School Podcast - Penguins, Superbowl, Groundhog Day

The Curse

There are two statements, which should NEVER be thought of voiced in the presence of Timmy. They are, "Good job Timmy! I'm proud of you" and "I have figured you out Timmy." If either of these statements are thought or voiced, Timmy will either refuse to repeat the task that he had accomplished perfectly. Or he will throw you a curve ball.

It was told to me that one of Timmy's teachers (I won't mention any names) made a similar statement to Timmy, "I've got you Timmy." So of course, today he threw us a curve ball.

In the past 7 years, when Timmy has had high blood glucose levels he has NEVER spilled ketones into his urine. His blood glucose levels have been well over 600mg/dl and NO ketones.

Even though Timmy has never spilled ketones, Timmy's Endocrinologist insists that when Timmy has a high blood glucose level that we test Timmy's ketones.

Timmy wears an insulin pump. Last night was a scheduled site change for his insulin pump infusion set. At bedtime Timmy's blood glucose level was slightly elevated (264). It was time to play the guessing game with Timmy's body. Is Timmy's glucose level elevated because we have a bad infusion set site? Is the insulin bad? Or is this just Timmy's body saying "Nah, Nah you can't figure me out!" So I opted to assume it was just Timmy's body. I treated the high level and gave Timmy his bedtime snack. I chose not to check ketones, being that I would have to wake Timmy up to retreive the cotton ball from his diaper in order to test for ketones.

Bad call! This morning when Merry, Timmy's Home Health Nurse arrived and checked Timmy's blood glucose level, it was 490. Yikes! Merry changed the infusion set site. After feeding Timmy breakfast and treating the carbs per Doctors orders, two hours following breakfast Merry decided it best that she check Timmy's blood glucose level again. Timmy's level was still high (450). Merry tested Timmy's urine for ketones. Have you guessed where I'm going with this story yet? Yep, you guessed correctly, Timmy had a moderate amount of ketones in his urine! After 7 years of NO ketones, we now have ketones.!? To say the least we were shocked. Merry even opened a brand new vial of test strips and got the same result.

Now dealing with Timmy's diabetes gets very scary.  Diabetic Ketoacidosis is a very dangerous/serious condition. What signs if any will Timmy exhibit in relation to diabetic ketoacidosis? Up to this point, Timmy has NEVER exhibited any signs of either low or high blood glucose levels.

Where we will sail off to in our new diabetes adventure? We shall see. Timmy's body will determine our next port destination.

Going To Visit Grandma

In just over 24 hours Floyd and Nate will be leaving to go to IL to visit grandma. (Floyd's mom) Ms. Wilma is undergoing radiation treatmwnts for cancer. Her cancer was discovered in December. Floyd is taking each of the kids one at a time, so that grandma is able to spend much needed quality time with each grandchild individually. This way, the kids aren't competing for attention from grandma.

Letting Nate go away so far from his home without me is very difficult for me. Nate and I haven't been apart for more than a few hours.

Floyd is a wonderful dad. He manages to take care of all of Nate's needs. What do I mean by manages? You mom's out there understand what I mean when I say "we" care for our babies better than daddy does. We know what each little whine, cry, grunt means. We respond to our babies at a minutes notice when they need something. Dads sometimes tend to overlook the fact that the baby needs their attention, like NOW. It isn't until the baby starts crying hysterically, that dad is willing and ready to step in and meet the baby's needs. Dads tend not to have as much patience. They are in their own little world most of the time. At night dad's turn off their ears. They don't heear the baby needing something until mom has been up for awhile and has the baby almost settled back into their bed. Does this sound familiar to you? Or is Floyd the only dad like this?

So now you can understand why I'm a bit depressed about letting Nate go away for 3 whole weeks!

I LOVE all of my children equally. But me and Nate and me and Timmy have this "special" bond. With Nate and Timmy my maternal instincts are hyper sensitive. I don't like having them out of my sight for too long. I'm not sure why I'm this way only with Nate and Timmy, unless it is because they both have a disability. Mommy wanting to overly protect her little ones. ?

Maybe with Nate and Floyd away, I will be able to have some quality "ME" time. A time for me to be able to catch up on this blog, to read, relax and not stress over the daily "to-dos". Yes, I will still have the other 3 (Timmy, Emily, Zach) in the evenings. During the day they will be in school. So all day starting at 9:00AM the rest of the day is MINE, until 2:45PM.

Oh what joy! But can't wait until my baby Natie Cakes returns home and is once again in Mommy's arms.!

Cool Dude...

We have been frantically searching for a "good" pair of non-jprescription sunglasses for Nate. Ones that are baby friendly and comfortable to wear. We finally found some that we like, that were pretty inexpensive. Baby Banz, http://www.babybanz.com/ had what we were looking for. The sunglasses have a nylon strap with velcro adjustment.  We only paid $29 this includes shipping. The thing that I didn't like about having to order from Baby Banz is that they only carry 2 colors, pink and blue. Amazon had many more color choices, but they were currently out of stock. And we needed something quick.

Nate's sunglasses arrived via USPS on Friday afternoon. Being that the weather was nice on Saturday we were able to go for a walk. It was sooo nice to be able to walk with Nate and him be able to open his eyes, look around and observe the world around him. Nate's eyes are very sensitive to light. In the past when we have gone on walks he has had to keep his eyes shut and this frustrated him.

Look out world, there is a COOL DUDE in town!

"I had much rather have a Harley and a Leather Jacket. But swinging is FUN!"

"Oh come one Timmy, Mommy says you have to share." This was Nate's 1st time outside having a turn in the swing. Judge for yourself whether he liked it or not.

Isn't he just the cutest???

Sunday - School Podcast - Cold Weather Week

3 Year Old Miracle Boy!

Chase Britton is one Very AMAZING little boy! He definately gives me HoPE for Timmy's future.