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.

Another Inchstone Reached

Yet another sign that my little guy is growing into a big boy!

By the time Timmy had reached 14 months old, he still hadn't gotten his 1st tooth. We were very concerned and asked his Pediatrician if this was normal, being that Timmy has a hormone deficiency. We were told to address our concerns with Timmy's Endocrinologist.

Timmy's Endocrinologist assured us that Timmy would get his teeth. He stated that one of his boys didn't get their 1st. tooth until he was almost 18 months old.

Within a few days following Timmy's Endocrinologist visit, WHAM, Timmy had his 1st tooth. Three months passed, no more teeth, but time once again for an Endocrinology visit.

Dr. Ali asked if Timmy had any teeth yet. We all were happy to show him that Timmy did indeed have 1 lonely tooth. The others will come he stated. Again within a few following the Endocrinology visit, SURPRISE, Timmy had his 2nd tooth. I swear that Dr. Ali must have placed Timmy's teeth. Once the 2nd tooth was fully in all the rest of Timmy's teeth started coming in like popcorn.

Unfortunately Timmy now has more teeth than his small mouth can hold. So in the near future Timmy will possibly have to have dental surgery to surgically remove some of his teeth to allow room for his permanant teeth as they come in.

Myself and Timmy's Home Health Nurses wiggled and wiggled this tooth for almost 2 months trying to get it out. Each time we would try Timmy would cry. This would break our hearts knowing that we had possibly caused him to be in pain.

Timmy's Teacher in now not only Timmy's Teacher, but also his Dentist. After us trying for what seemed like FOREVER to pull the tooth and Timmy crying each time., Mrs. Bishop asked Timmy to let her try. Timmy giggled and smiled (His way of communicating YES/Okay.) Mrs. Bishop tries twice and out pops the tooth. Timmy DID NOT cry once! Goes to show what a wonderful trusting relationship Timmy has with his school teacher.

Timmy had a Special late night visitor, who bought his very 1st. pulled tooth from him for a grand total of $7.00!

Poor Emily now wants all of her teeth to be loose so that she can pull them all and get some money. She has also request to speak with the Tooth Fairy so that she can inform her just how much she expects for all of her teeth.

Oh forgot to mention, Emily feels that her teeth are worth $20.00 a tooth. Yikes! She doesn't need a Tooth Fairy, she needs Bill Gates!

Feeding Tube Awareness

                                             
 February 6-12, is Feeding Tube Awareness Week.

http://www.feedingtubeawareness.com/

This website was created by parents for parents, other family members, friends and strangers, to educate and to bring awareness. The website has good information, resources, family stories and practical tips and other general information of interest. Check it out.

                                                         

There are a lot of misconceptions about feedding tubes. I would like to take the time to share our experience.

Timmy has had his feeding tube for 4 years. His tube was placed after his 2nd hospitalization with pneumonia. The doctors suspected that the pneumonia was due to Timmy aspirating. A swallow study showed no aspiration. We opted to go ahead with the feeding tube placement. We felt that it would be beneficial in the treatment of Timmy's diabetes and to administer medications.

The decision to have the feeding tube placed wasn't an easy one for us. At the time, we were so overwhelmed with the day to day care of Timmy's other complex medical needs. We felt that by having the feeding tube, we would only be adding more stress to our lives. In the end the pros outweighed the cons.

At first, we too had a lot of misconceptions. After speaking with Timmy's Gastro-Intestinal Doctor and other families who have children who have a feeding tube our fears and misconceptions we put to ease.

*We like to do a lot of travelling. We thought that by Timmy having a feeding tube we would be restricted as to where or how far we could go from home. Actually by Timmy having a feeding tube, we have opened up more travel possibilities. And travelling with Timmy is a lot easier. We don't have to worry about trying to find a resturant which has soft foods of the consistancy that Timmy can eat. We can give Timmy formula via his feeding tube over a 15-20 minutes and off we go. He has been feed. No worries.

*We had heard that "most" children who have feeding tubes, their feeding tube stomas stay infected all of the ime. In our case this isn't true. Over the past 4 years, Timmy's feeding tube stoma has never been infected. As long as the stoma is kept clean and dry, this cuts way down on the risk of an infection. We also apply a protective barrier cream (Nystatin or Bactroban) twice daily, which has helped.

*Some people are under the impression that those with feeding tubes can not eat orally. In our case, Timmy can and does eat and drink orally. Timmy's feeding tube was primarily placed to administer daily medications, to help us better manage Timmy's diabetes and to help keep him hydrated when he is sick and refuses to eat/drink. There are some children who can not eat/drink orally. The list of reasons are long, but a few examples may include, possibility of aspiration, cleft lip/palate, lack of muscle tone in the neck/face oral sensory issues.

*Some people are under the impression that a child who has a feeding tube can not take a bath or go swimming. This isn't true. Timmy takes a bath every night. He has been swimming many times and even to the beach. As long as the feeding tubes balloon is properly inflated, which creates a seal around the feeding tube stoma, no water can get into the body.

*A child who has a feeding tube can have "tummy" time on the floor to play. Timmy loves to lay on the floor and he has never complained about the feeding tube hurting his stomach. We have not noticed any redness or bruising after Timmy has spent a while playing on the floor on his stomach.

If a child has reflux, the child's gastro-intestinal Doctor may suggest when placing the feeding tube that a Nissen Fundoplacation be preformed as well. This is a procedure in which the bottom portion of the esophagus and the top portion of the stomach are "tied" off to prevent food from re-entering the esophagus from the stomach. (acid reflux)

Some parents have stated that if they feed their child too fast via the feeding tube, this causes the child's reflux to become worse. We have noticed this as well with Timmy. When we feed Timmy via his feeding tube, if we feed him over 15-20 minutes, this reduces his reflux. Timmy also had a Nissen Fundoplacation when he had his feeding tube placed, but we think that the Nissen is failing and needs to be revised. In some medically complex children, having to have the Nissen Fundoplacation revised is a possibility. The revision is a surgical procedure, which may require the child to have to be hospitalized for a few days following the surgery.

Help spread the word to bring awareness and to educate. So that those who have feeding tubes can one day be treated as an equal part in society.

Dr. Ali's Gift

It is nice when as a parent of a special needs child, we are able to take our children to see one of their Doctors when the child isn't sick. To have a special visit. A visit in which you are able to thank the Doctor for all s/he has done for your child and the entire family. A visit in which you let the Doctor know that he isn't just a major team player in the care of your child, but a true family friend.

It is nice to be able to walk into the clinic, tell the receptionist that the Doctor is expecting you. And No we don't have an appointment. To be called back to see the Doctor after just a few minutes. To see the glares from the parents of children who are tired, hungry, anxious, being unruley, who have been waiting to see the Doctor for what seems like hours. The glares don't bother you, because for once our child is seeing the Doctor and s/he isn't sick. The glares don't bother you, because your heart is filled with joy, love, pride, thanks, so many emotions to even put into words.

We had one of those visits today.

We took Timmy to see his Endocrinologist. Timmy had a special Christmas/Thank You gift to give to Dr. Ali. Dr. Ali is and has been Timmy's/our #1 team player, in Timmy's care, for the past 7 years. Without Dr. Ali's professionalism, care, dedication, knowledge, understanding, and his ability to trust and believe in us as Timmy's parents, Timmy wouldn't be as healthy as he is today.

Thank You Dr. Ali for all you have done and all that you do to help keep Timmy healthy.

Sunday - School Podcast - Happy New Year

Calendar Kids

Timmy along with 12 other extraordinary children, all of them patients of N.C. Childrens' Hospital, will be featured in the 2011 N.C. Childrens' Hospital "A Patient From Far Away" calendar. The children and their families hail from as far west as Bryson City in the mountains to as far east as Newport near the coast. Each month N.C. Childrens' will debut the story behind the patient featured in the calendar spread for that month. The Calendar Kids and their story can be viewed by visiting www.ncchildrenshospital.org/calendarkids
To read a story from a past month, simply click the name of the child you would like to learn more about. The links to the previous months are located to the left of the page.

Timmy's picture and story will debut in October. Yes, Timmy's birthday is in November. Being that UNC's telethon airs in November, the calendar kid for that month is the child being featured during the telethon.

We have a paper calendar, which has a small story entry of each child featured each month. I personally have really enjoyed reading about and getting to know the featured children.

Pictures From The Past

One of Emily's classmates (Ashlyn) mom created a photo album on http://www.winkflash.com/ for parents to upload class pictures. This photo album is a great way for those parents who are unable to attend class events to see just how much fun the kids had. Thanks Melissa!

I'll admit I had forgotten about the album, until I was going through some ond e-mails and came across the link.

Here are a few (not all) Holiday and Farm Inquiry pictures of Emily and her friends.

100th Day

Today is Emily and Timmy's 100th day of school. They each had to do a project that included 100 objects to represent the 100th day of school.  I have to admit this my favorite project of the school year. I get to use my creativity to guide Emily and Timmy in learning.

This year was Timmy's 2nd year doing this project. This year the project was lead by the UNCW student teacher in Timmy's class. Brandi made up bags which contained a paper hat and a few object to help get parents and the child started with making the 100th day hat.

Where's Timmy?

We used a blue Bingo Dobber, sticky back ABC's, the numbers 0-9, and a few other miscellanous "shaped" objects that had to be glued to complete the hat. Doesn't he look so cute?

100 multi colored pom-poms glued to a paper plate make up Emily's hat. She had LOTS of fun helping to make her hat. She  was so proud of her creation she wanted to wear the hat to bed last night and to the bus stop this morning. We came to a compromise, she was allowed to wear the hat for a few minutes this morning before we left out to go to school.

How adorable is she?

I looking forward to next year!

Family Recipe For Excitment

Over the past 7 years we have tried this recipe for "Weekend Excitment."  Today the recipe was perfected.  Here is what you need to make your own "Weekend Excitment."

INGREDIENTS....

*A Friday evening or early Saturday morning (Friday evenings work best)
*A forecast for a significient snowfall for the Northeast
*A Little Boy (A Little gril may be subtituted)
*An insulin pump (Any medical equipment necessary to substain life may be substituted)
*A  6 month old who is sick with the flu and a cronic ear infection that needs to be fed, changed and wants attention, so they are screaming to the top of their lungs
*Long acting insulin with syringes (Any medication that can be added to the normal regiment will work)
*Prayer (optional)
*Ear plugs (optional)

WHAT YOU NEED TO DO....

1. Combine the weekend day and the significient snowfall in the Northeast. Set aside.

2. Play with, hug, and kiss the little boy, who has brittle diabetes. And who has a pancreas with a mind of its own, which causes the little boy to exhibit absolutely no normal signs/symptoms like a typical daibetic.

2.

3. Slowly add the insulin pump to the little boy. This pump will help substain life and help the little boy grow and flurish.

WARNING: WITHOUT WARNING THE INSULIN PUMP WILL ONLY FAIL ON WEEKENDS!

4. Briskly add the sick screaming baby. And insert earplugs into your ears if desired.

5. Pray that there is a current standing prescription long lasting insulin on file at your pharmacy of choice. Pray that you are able to reach the Endocrinologist by phone or pager being that it is a weekend and he does have his own family and life to lead. Pray that the sick screaming baby will fall asleep, long enough for you to take care of the emergency at hand.

6. Call pharmacy. Have needed insulin. Call Endocrinologist. Reach Endocrinologist. Get orders for the correct amount of insulin to give. Call Animas to try to trouble shoot the insulin pumps problem. COMPLETE PUMP FAILURE.

7. Combine the weekend and predicted snowfall to the other 6 ingredients.

Product is complete after 72 hours of no sleep, head full of grey hair, all fingernails are jagged, and complete loss of sanity AND the replacement insulin pump arrives via UPS.