I didn't realize it had been over a month since my last post. Life just got very busy last month!! It's been crazy both with diabetes and regular life.
I've thought many days about what I my next post would be and have lots of ideas, but I need some more time to type them out. Today I'm just saying "Hello" and "we are still here!"
A quick update: It looks like Abby's honeymoon phase came to an end a few weeks ago so now we are increasing her insulin needs. Let's just say it's been quite a rollercoaster, but I think we are now settled back into a stable pattern.
Halloween came....and went. The kids trick-or-treated and brought home what must have been 15lbs of candy!! We are separating them into chocolate and other sugar treats that Abby can use for lows. She had her 1st meltdown this morning over wanting to eat candy for breakfast and yelling about how everyone else gets to eat candy whenever they want. I just looked at her and said, "Diabetes or not, candy is not for breakfast." We have these little moments sometimes and I try to put it into perspective for her. It isn't fair that she can't just grab a snack or treat and gobble it down without thinking twice.
One morning I woke Abby up and she was mad at me, I wasn't sure why. Then she looked at me and said "Mom, I was dreaming that I didn't have diabetes anymore and you woke me up. I just want to go back to bed and see if I can have that dream again." That was heart wrenching to hear and there is nothing I can do about it. I sometimes feel like all the issues that come with diabetes are still really not happening and that one day all this will be over with, but the only way that will ever happen is if we find a CURE!
November is National Diabetes Month....please consider donating to jdrf.org to help in finding a cure or if you are unable to do that then please take some time to learn more about Type 1 diabetes. I'm learning that there is a great misunderstanding of this disease and education needs to happen.
Well, there it is....a little update and now I'm off and running again to do my daily running. Hopefully I will get an opportunity to update again soon as I have some great ideas in store.
That pretty much sums up life, doesn't it? Work, Home, Friends, Eating, Exercising...What is the right balance?
That is what I feel like I'm doing all the time with this diabetes business. I really want to jump all into finding a cure. This is all I want for my little girl. Some days I'm o.k. with how we are "dealing" with it, but lately I am not as content as I was. In the beginning there was shock, but releif too. Relief in knowing why she was so sick looking all the time and now we have the reason and the medicine to make her "better". But she's really not better, it's just a band aid until there is a cure. So I find myself balancing now the attention I give diabetes. I don't want her to feel sorry for herself, I want her to be proud of who she is. Diabetes does not define her (which is partly why I think she does not want to be hooked to a pump), she wants those windows of freedom between injections and Glucose checks. I want her to know that I feel terribly about this, but at the same time it is the life she has and she just needs to deal with it. We balance what food she should eat and when, depending on her blood glucose numbers. We balance out how much responsiblity to give her in her care (honestly she's a pro now). But I also need to balance the attention she gets with the attention I need to give her 3 siblings. It's not fair that she has diabetes, but it's not fair to her brothers and sister to get short changed on attention. I want to battle this diabetes and jump in and help find a cure, but I don't want it to be what life is all about. Which is also why I never refer to it as a "disease" (see note). That just makes it sound awful....in our eyes....it is a condition. And so I pray daily for the knowledge and strength to strike that right balance.
edited 2/15/2012 - O.K. so now I call it a disease because we hit that rollercoaster of numbers and frankly it's maddening, so yes I now call it a disease, but not to Abby.
That's how long we've been in our new house. Feels like 30 months already! So much has happened in 30 days I'm not sure where to begin. We have a lot of "stuff"! That is for sure. We did however donate a lot of that "stuff". So here is our abbreviated list of "got that done."
redecorated the girls room
moved the baby to a toddler bed
installed shelves in the garage
assembled our home theater area
had 1st appt with Cincinnati Children's Endocrinology (4hr appt and we really like them)
Signed the kids up for school
Bought a million school supplies
Started Gymnastics classes for the older 3
Gave haircuts to everyone
Finally after 3 weeks got phone and internet!!
participated in parade
ordered cabinets for our mudroom
Painted the mudroom/laundry room, part of living room and dining room
bought a new lawn mower
installed 20 sets of blinds
weeded and fertilized the yard and spread 60 bags of mulch
Whew!! I'm sure there is more but seriously this is just way too much for 1 month. One thing I am ever so thankful for is that Abby's diabetes is doing great! Her a1c at her check up was 6.9, that is so awesome.
So for now, this is my long, abbreviated post to say, "Hey, we're still here!"
3 more days of ... the apartment
3 more days of .... "What can we do today mom?" Me: "Go ride your scooter in the parking lot."
3 more days of .... "did Andrew lock himself in the bathroom again?"
I will never miss this place, ever!
On August 2nd we will close on our house here in Ohio, race back to GA to meet the movers, then race back to Ohio to finally move in.
Then the fun begins. Normally I would just sign my kids up in their new schools, buy supplies and wait for the first day. This year will be a bit different. First I need to meet with the school that Abby will be attending, find out if they have a full time nurse and if not who fills in that spot. Then I need to discuss her "504 plan" , a plan that covers the disabled. That's right disabled is what they call it. Before diabetes I had never heard of a 504 plan . It is civil rights law that protects her so that her school accommodates her accordingly for her diabetes since she requires several Blood Glucose tests during the day, insulin shots, access to sugar snacks to treat a low BG and to never be left alone (even to walk to the nurse or office). I've heard many horror stories of schools just ignoring 504 plans even though they are legally obligated to follow a reasonable 504 plan. I suppose the word "reasonable" is what they use as their excuse to ignore it, claiming the requests are "unreasonable." We were so fortunate to have a wonderful experience at our school in GA. They wrote up a 504 plan and had it ready when Abby first returned to school after her diagnosis. The nurse and all teachers were very aware of her needs and were very willing and helpful. They would bring in a substitute nurse when Abby went on field trips.
Then we will have our first appt with our new Endocrinologist at Cincinnati Children's. Apparently this will be a 4 hour appt. See that's another thing I never knew that came with this diagnosis. A visit to the doctor every 3 months where you will see a nurse and diabetic educator, nutritionist, social worker or the doctor. Every visit involves height and weight check, blood pressure and a blood test called an A1C test. At diagnosis Abby's a1c was 15.2%, which converts to an average Blood Glucose of 390 for the prior 2 to 3 months, her BG at dx was 440. Ideally she needs to be below 7% and 8 weeks after diagnosis her a1c was 8.2%....much improved.
Finally, before she starts school we will need to create a diabetes set of supplies for school....extra meter, syringes, insulin, glucagon shot, alcohol swabs, test strips and low blood sugar kits for the nurses office and all the classrooms she will be in during the day.
Oh yeah, and I suppose we will need to get some "traditional" school supplies, you know, the 3 dozen pencils that have been requested, as well as some markers, paper and folders!
So, I suppose I will relax these next 3 days, because the following 3 weeks are going to be crazy busy.
Finally Saturday rolled around and we were off to pick up our little girl. We missed her more than ever. This was the 1st time she had ever really been away from us other than an occasional sleepover and also the 1st time since her diagnosis. All week I worried about her. Was she low? Was she too hot? Was she sad? Did she get my package? I could not get there soon enough. I even looked at my husband funny when he mentioned grabbing some breakfast when we were half way there. Can't you eat later?! was what I was thinking. Finally we made it there and realized as we pulled in at 9:28 that we were by no means early. Some people were already getting back into their cars to leave. We walked up and there she was, all smiles and excited to see us, BUT....sad to go. She LOVED camp! After our review with the doctor (everything was pretty good with her, a couple of lows, but they adjusted her insulin accordingly), we gathered her things and were on our way. I just wanted to grab her and not let her go.
We were all in the car and she started to talk and that's when I wondered....Who are you? Where is my little girl? She could not stop talking about everything they got to do at camp, who she became friends with, all the "critters" that were found in her cabin, the swimming and THEN...."Mom, I have a boyfriend." WHAT????!!! Ummm, how could that be? She proceeded to tell me about the boy she danced with at the Friday night dance, and how someone told her she should "break up" with him and her response was, "I can do whatever I want." That was after she chewed me out for not telling her to pack something nice to wear to the dance. I didn't know about a dance, but she did fine with her blue jeans and cowboy boots. Then after we got past that initial shocker she said, "mom can I get my ears pierced today." Oh hold on I thought, let me catch my breath.....And so, after dinner that night we made a trip to Claire's.
Then to top it off, we went shoe shopping and she bought her first pair of women's shoes. I suppose it is going to happen, but I'm not sure I'm ready for her to grow up just yet.
Our new favorite craft....not really by choice, although we enjoy it. Before Abby left the hospital she and her friend Lucas went to the craft room to make a new bracelet.
This is by far the most important bracelet she will ever have. When she came back to the room to show me her new bracelet I had all I could do to not break down. When we have little girls we think of all the fun of buying her pretty necklaces, earrings and bracelets, playing dress up and just doing all those girly things. I never imagined that she would need to depend on one of those bracelets to save her life. Everytime I look at her wrist it is just another reminder of this unfair disease. What many people don't realize is that when your blood sugar gets very low (learn more here: Hypoglycemia, Low Blood Sugar) you don't have this flashing beacon over your head saying "Hey, I need help". Abby learned about a 17 yr old girl (with Type 1 diabetes) who was at a party where there was drinking. The girl was not drinking but others were and they were all underage. Well, this girl was stumbling around and slurring her speech and the other kids assumed she was drunk. She passed out but no one did anything about it because they just thought she was drunk and no one wanted to get caught for underage drinking. She died the next day. This is why these bracelets and education are so vitally important. So that leads me back to BEADS...
Yes we are now the owners of lots of them!! This is our new craft these days and Abby is quite good at this and we are learning more everyday. She has a little case of bracelets that she has made that simply clip onto her diabetes plaque. We were originally going to purchase them online but I was floored when I saw that people were charging $30 - $40 each for these! Really?? I can buy the supplies for about $3 and a plaque for about $6. They really don't take any time at all to make and now this is Abby's gift of choice to give. So when you see a BEAD think of it as more than just a pretty stone remember...BEADS...Being Educated About Diabetes Saves.
Well in our 11 almost 12 yrs together Doug and I have called 4 houses our "home". Our current home is this apartment we are currently residing in (actually it feels like an extended hotel stay)....that reminds me...I need to send flowers to my downstairs neighbor. Did I mention someone complained about the "noise". Yep, we seem to be the only one with kids in our building. Well, we now will have a 5th house to call "home". We've been trying to purchase a home that was being sold as a short sale. I was not very hopeful that this process would actually happen in a timely manner, but yesterday we got the call we've been waiting for...the seller's bank signed off on the transaction. Provided all goes well we will have a new address on August 2nd.
That describes the day thus far. At least everyone took a shower! The heat index is somewhere above 100 so there ain't no way I'm going outside. Today we lounged around, organized Abby's diabetes supplies, talked with another diabetes mom, potty trained some and baked some mini brownies....
Yep, that pretty much describes this blog and my ability to use it!! I guess I will learn as I go. My hopes of this blog is to entertain & educate. Entertain you with our daily trials and tribulations as a family of 6, to share our joys and triumphs and more importantly.....educate you on Diabetes.
That's right...DIABETES. I used to view it as many others do, a disease of those who don't take care of themselves, who are usually older than me and as something that I might perhaps have to "deal" with when I'm older. Well, little did I know that it would enter our lives earlier than I thought possible. 3.15.2011 at 5pm - the day we were told that our daughter Abby, who had just celebrated her 9th birthday 2 weeks prior, was diagnosed with Type 1 diabetes ( Juvenile onset diabetes). We had been trying to figure out why she didn't feel well, wasn't growing and lost weight. We had suspected diabetes but I guess we just never thought that was actually it. I was relieved to have an answer but sad also. Dr. Gilbert told us to have her drink lots of water and if she gets really sick to go straight to the hospital. The next day we were contacted by Pediatric Endocrine Assoc (we'll talk about them later) and told that we needed to check into Children's hospital at Scottish Rite that evening and expect to be there for 2-3 days. What a whirlwind those 1st 3 days were. On our way to the hospital Abby chowed down on graham crackers and Peanut Butter. You'd have thought she wasn't going to get fed for days! We finally got up to a room that evening and were handed our "class" schedule. That's right 2 full days of diabetes education for all of us. Then they send you home to "do it on your own". WHAT??!! I have to keep my daughter alive with insulin, shots, Blood Glucose monitors, ketone strips, alcohol and keep track of all carbohydrates entering her body?! And you only gave me 2 days to learn how to do it!
That was the beginning of our new life with Diabetes. I hope to share more with you as we learn more.