A Wonderful Week

It was a wonderful week, visiting with Jolene Philo and discussing her new book, Different Dream Parenting.

I want to thank Jolene for stopping by and sharing some of her time with us. She has had plenty of experience raising a special needs child. And she was gracious enough to stop by and share her knowledge with all of us.

Thank you to those of you who stopped by and left a comment. 

And...

Congratulations to Kathleen Maher for winning a copy of Jolene's new book. 

It's a busy season, and I apologize beforehand for the brevity of posts. I am working on ideas for articles for the new year. 

If you have any suggestions for topics you'd like to read about, please drop me a line and let me know. I am always looking for new angles to cover.

I will share our Christmas news and how our season of goodies, candy, and abundance of food at this time of year worked out for us.

Sawyer is doing great! He's a tough little guy. 

I am sure Santa has taken notice :D

Merry Christmas to one and all!

First Road Trip Away From Sawyer

Photo courtesy of twogirlstakeonlove.net

We had to go where Sawyer wouldn't be able to accompany us; a college visit with our older daughter.

A tour on campus would be lengthy, detailed, and our total attention required.

Sawyer would have to stay home.

There was one little problem; Sawyer had never been under the care of anyone other than my husband or me.

We deal with the obstacle of not having support from family, friends, or neighbors. 

In short, we had our son in our later years, after parents and grandparents had passed on. My siblings and cousins, as well as my husband's, live out of the area. In addition, we live rurally. There are no close neighbors to call on for assistance. 

I won't lie and say it's an easy thing to raise a child with several special needs. It has been a challenge.

I honestly did not want to leave Sawyer and make the two hour trip away from home. In my mind, that was too far away from him if he needed me. 

Fortunately, Sawyer does have an older sister. She is 26 and doesn't live at home anymore, but in an absolute emergency, I will call on her. 

I had given her some diabetic education in treating hypoglycemia and checking Sawyer's blood glucose levels. She hadn't yet been taught how to calculate carb ratios, insulin dosages, and administration of insulin injections.

We had one thing going for us; Sawyer could administer his own shots.

I communicated with another mother of a diabetic, and she shared that she had her child's babysitter call her with the amount of carbs her child would be eating at a meal, along with his blood glucose number. She would calculate the insulin dosage so that the child care provider would know how much insulin to administer. In fact, her son knew how to give his own injections, so it was pretty much a no-fault system. 

This gave me some peace of mind on my first day away. 

I had Sawyer's snacks and meals prepared in advance. His sister then had only to call me with the blood glucose number and carbs so I could do the math and Sawyer could administer his shot. 

His sister is a smart cookie, so I showed her how to calculate the numbers in the event I couldn't be reached. She did call, however, to be certain of the dose. 

It's a delicate thing, dosing insulin. Just one unit can make a huge difference in blood sugar levels. One unit too much, and hypoglycemia may occur. One unit too little, and a child may become ill due to hyperglycemia.

*Photo courtesy of feastoffun.com*

The day came when we had to leave Sawyer. We would be gone the entire day and guess what?

It all worked out.

It's a hard thing to give up control and trust that your child will be in good hands. Add to that, a disability, and the nerves try to get the best of you.

Being a parent is a huge responsibility. So much so, I think there should be parenting classes before someone has children. 

Then parenting students would learn about the awesome responsibility that comes with raising a child. Unlike a puppy, you can't return it to the pound if you decide it's just not for you. 

Being a parent means you will no longer sleep soundly through the night. From diaper changes and midnight feedings to staying up past midnight wondering why your child hasn't come home yet. 

The investment is time and the return is love. 

There will be times when taking your child with you just isn't an option. It is at that time you will need to have someone in your corner you can trust. Preparation will alleviate some of the stress. If your child is old enough to participate in their care, allow them to do what they can. It will empower them and assure you.

*Photo courtesy of smcsundayschool.com*

We can't be with them all the time and the first trip away can be one of apprehension. It was for me. I dreaded it. Yet, it all worked out fine. 

It is important, though, to have someone you can call on in times of need. Have a trained family member, friend, or neighbor on deck. 

And take that first trip away with confidence.

Confessions From an Imperfect Mom

(Photo courtesy of energydotsblog.com)

It had to happen eventually.

I messed up.

The doctor and nurses told me it wouldn't always be perfect.

And they were right.

This morning I was preparing Sawyer's breakfast. I went to write his carbs into the log book and there it was...a big blank space where I should have logged his lantus insulin from the previous evening.

Did his dad give him his medicine?

No, he was out at the time we usually administer his shot.

Did I give it to him?

I had no memory of it. 

I asked Sawyer if we had given him his lantus the night before. He thought about it a few seconds and said, "No."

How could I do that? 

I felt like a horrible mom.

 What it actually proved was that I am not perfect. No matter how hard I try to give Sawyer the best care, there are times I will mess up.

I asked myself how I could let this happen. 

Could it be because I have so many meds to administer in a day between Sawyer and me, that I just got confused? Overwhelmed?

Could it be the hectic schedule I've kept lately?

Maybe school work and end of the term stress?

Or maybe it's the lack of respite from caring for Sawyer and his needs. 

Ah, I have it. It's the vacation I haven't had in almost ten years. 

Whatever the cause, after speaking with Sawyer's pediatric nurse, she said "It just won't ever be perfect. It happens. He's fine. Don't beat yourself up over it." 

*Breathing a sigh of relief*

I see Sawyer as someone who needs me to be his superhero; perfect, flawless, and never let him down.

And yet, I did. 

By the way, Sawyer's numbers were fine. The nurse told me that because his blood sugar has been under control for some time now, it wouldn't have an impact on him. If it had been at the onset, then it would have been different. 

(Photo courtesy of anothercookieplease.com)

Try as we might, perfection isn't the definition of a mother.

Love is. 

And maybe exhaustion at times. 

One Small Step For Our Children

Many of you may remember my sad story about the twelve-year-old girl who was diagnosed with juvenile diabetes*. I thought, “If only this girl had been tested, maybe she would have been spared the complications from which she now suffers.”

photo courtesy of kaboodle.com

Moved to act, I wrote a letter to New York State Senator, Catharine Young, sharing the story of the young girl. I also shared the story of my seven-year-old son. Expressing concern for children that may be living with undetected diabetes, I suggested diabetes screening for school children. The test would be relatively inexpensive if test strips were used. 

Today I received a reply from Senator Young. In her letter, she shared with me that there is currently an Assembly bill that “would require a risk analysis and testing for diabetes for high risk youth, before entering 1st, 3rd, 7th, and 10th grades.”  The legislation is now before the Assembly Education Committee. 

photo courtesy of hertzfurniture.com

I did some research and found Assembly bill 1320 and read what it encompasses. The justification for the bill states, “Diabetes rates in New York State increased by more than 50% from 1994 to 2001. Most of this increase is in the form of Type 2 diabetes, which is related to obesity and lifestyle.”

The bill also states, “A recent Centers for Disease Control (CDC) study estimates that one in

three U.S. children born in 2000 will become diabetic in their lifetime unless this trend is reversed.”

  

While I’m glad to hear that the Senate is taking this epidemic seriously, I am concerned about a couple of things. 

How long before this bill is enacted? Here is the history of the bill to date:

LEGISLATIVE HISTORY:

2004 - A.9176 2005-2006 -  A.2167-A Referred to Education

2007/08 - A3826a - Amend and Recommit to education

2009/10 - A5701 - Referred to Education

This bill has been passed around since 2004. It’s time to stop playing politics with our children and get this done. Obviously, someone was smart enough to see diabetes as an increasing problem or they never would have written this bill. 

Another concern.

 This bill focuses quite a bit on Type 2 diabetes. Children will be singled out based on ethnicity and weight. If a child is in the African-American or Hispanic category, they are at greater risk for  diabetes so they will be more closely monitored than their peers. This is also true of children that are obese. 

photo courtesy of hubpages.com

My son does not meet any of this criteria. At the time of his diagnosis, he weighed 56 pounds. He is also white. While he has a small amount of Native American heritage, that does not show up in his appearance. Would he have been monitored based on the predetermined criteria? 

Perhaps if a family history was provided.

Oops, no history of juvenile diabetes on either side of his family. There is a history of Type 2, or adult onset diabetes, but would this have set off any warning bells?

Overall, I am happy that this bill may be enacted into law. 

I would ask everyone reading this to prayerfully consider supporting this law and contact your local Senator. 

A copy of Assembly bill AO1320 can be read here:

http://assembly.state.ny.us/leg/?default_fld=&bn=A01320&term=2011&Summary=Y&Actions=Y&Votes=Y&Memo=Y&Text=Y

photo courtesy of medheadlines.com

Diabetes can be controlled if it is caught in time. Children at high risk can get the help they need to avoid Type 2 diabetes. We can arm these children with information on healthy eating and exercise. Furthermore, children who may already have Juvenile diabetes, without showing any symptoms, could get treatment as soon as possible.

A list of Senators and contact information can be found here: http://www.nysenate.gov/senators

Officials don’t know what we are thinking if we don’t share our thoughts with them. 

photo courtesy of ammoland.com

“It is the input of New York’s citizens that brings about positive changes.” - Catharine M. Young, Senator, 57th District

*Blog Post I Heard a Sad Story the Other Day

First Follow-Up

The First Follow-Up

What to expect at the first endocrinologist appointment after diagnosis

photo courtesy of wearechildrens.org

Leaving on Time

9:00 am on a Tuesday 

It seemed like we were cutting it a little close. We had about an hour and a half drive into the city to the children’s endocrinologist and my husband thought we had plenty of time to get there. I am the type of person who likes to leave early to allow for construction, traffic tie-ups, etc. Not my fly-by-the-seat-of-the-pants husband. The appointment was at 10:30 and we had never been to the doctor’s office before. If there was even one delay....but he was driving. So okay, I packed up what we needed for a short day trip and out the door we went.

10:30 am

So, we must have taken a wrong turn at Albuquerque. Looking at the Google maps, we should have gone east. How could I have known the map read backwards and we actually needed to turn west. This wasn't going well. I knew we should have left earlier. I made a call to the doctor's office and let them know we were a bit lost, but would be there as soon as possible. I hate being late. This wasn't a very good first impression.

Photo courtesy of cchealth.org

10:45 am

We arrived at the address on the cute little fridge magnet the doctor gave us while Sawyer was in the hospital. Standing outside the hospital entrance, Sawyer and I waited while his dad drove around looking for a parking space. Around and around the block he went, shrugging at us as he drove by. I decided we better get inside and dad could catch up with us later.

10:50 am

After going in the wrong entrance and having a security guard show us where we needed to go, (which was in an adjacent building) we arrived at the doctor's office. Out of breath and frazzled, I apologized profusely to the receptionist for being late. She handed me a clipboard with a stack of papers to fill out. I juggled the clipboard, my purse, and a tote with Sawyer's supplies, while trying to keep track of Sawyer. He also has ADHD/ODD. It wasn't easy and I'm sure I looked like a maniac to the others in the waiting room.

10:55 am 

Sawyer and I followed a nurse into a room where they checked his blood sugar and other vitals. My cell phone was ringing and dinging with text messages and calls from Sawyer's dad. I guess I couldn't balance the phone on top of everything else. I told the nurse I had to go find my husband since he didn't understand my directions from the text. She said Sawyer would be fine. She'd watch him. I left for 10 seconds, then went back when I saw Sawyer's dad found us. The nurse was gone. She left my ADHD son alone and he was also gone. GRR! I found him outside the door playing hide and seek from the nurse. 

photo courtesy of metroparent.com

This day was just not going well

11:05 am

The nurse connected Sawyer's glucose meter  to a computer and downloaded all of his numbers since his last visit. It's pretty amazing how far the technology has come for people with diabetes. The nurse was able to print a graph of Sawyer's numbers and track the trends - where were the numbers high, low, were they trending higher in the morning - things like that.

11:10 am

Be prepared with your child's glucose meter as well as his/her log book. Before we saw the doctor, we were given another clipboard with a stack of papers to fill out. Information such as blood glucose for the last week, insulin doses, and so much more was asked for. I'd advise anyone going to their endocrinologist appointment to bring the log book. I didn't know all of the numbers off the top of my head exactly, but I had a general idea. 

11:20 am

A representative from a research study spoke to us while we waited for the doctor. She wanted to know if we'd be interested in participating in a study about type-one diabetes. Researchers are close to a vaccine for juvenile diabetes, and data is being gathered to help with their research. She said we'd even get a $10 gift card for filling it out.

Wait a minute. I filled that long survey out and mailed it back. Where's my gift card?

Anyways, it was well worth the time if it will help researchers find a cure for this disease.

photo courtesy of lebonheur.org

11:25 am

By now, Sawyer was bouncing off the walls; literally. He was standing on the examining table, dancing on the white tissue paper and ripping it to shreds with his sneakers. He was pulling on the ear/nose/throat equipment, making a general racket, and I had a red forehead from rubbing my head non-stop. There was no reasoning with him. His father and I  tried to talk to the doctor over his noise and I was impressed with her calmness. She looked at Sawyer and then to my husband and I before saying, "I think you may want to see about getting him something for that."

 Indeed.

In Conclusion

Overall, the visit went well. Sawyer got a thumbs up from the doctor. She gave his parents props for a job well done, also. 

Phew. Through all the mayhem, we did something right.

photo courtesy of co.madison.tn.us

Tips

If you are going to an endocrinologist appointment, or any specialist for that matter, remember first and foremost to leave a little bit early. Allow time for wrong turns. It will save stress later; especially if your child has trouble sitting still in the examining room. Also, bring all the information you have - log books, journal entries, meal diaries, glucose meter, and something for a headache. 

It ain't pretty and it ain't perfect but we made it and so will you!!

photo courtesy of theexecutivebrand.com