I didn't realize it's been so long since I last blogged. I'll catch you up now on what the last 22 days have been like for us.
It has become a sort of tradition for Jordan and I to make a weekend trip over to New Richmond, WI in the summer for a large dirt track race. Delanie has gone with a few times and now it's Trey who goes along. Due to his diabetes, I wasn't sure this was a good thing for us to tackle this year. After much thought, I agreed that Trey could go but I had to go with him. Trusting someone else to take care of my child for 4 days at 8 hours away was hard for me. Now, let me go on record saying that I DO trust Jordan to keep track of Trey's sugars. BUT, I've also been around Jordan at the races before and I know how into the race he gets and forgets that there is a little boy who has to go potty, who is starving, who has a bloody finger from racing his cars in the gravel, etc. The other thing Jordan isn't wonderful about is keeping track of and knowing what is a good food and bad food for Trey.
Anyway, we head off to Cedar Lake Speedway and had a great four days over East. Trey's sugars ran a little higher than we like, but took into consideration that 1) we were in a car for 8 hours 2) it was HOT 3) greasy food (except for the snacks mom snuck in) and we did give a little bit of extra insulin each day to help keep him feeling his best under the circumstances.
While over in WI, Trey learned more about the insulin pump. Trey's Great Uncle Jeff has T1D as well and got the pump about 15 years ago. He showed Trey some of the features and talked to him about how it works. You see, Trey had told us for a couple months that he didn't want the pump. He couldn't tell us why, but we wanted him to see what it actually was and how it worked before deciding for sure "NO" would be our answer when meeting with his doctor. Trey and Jeff have always had a close bond, but this T1D has made it that much stronger and while I hate that Jeff has the disease as well, I'm forever thankful that Trey has a huge connection to Jeff and they can help each other out. In fact, after leaving a restaurant for lunch one day, Trey yelled across the parking lot to Jeff, "Take your shot, Jeff!!" We all cracked up laughing.
We had our three month Endocrinoloist appointment in Sioux Falls on the 9th. At these three month checks, the doctor checks your A1C level which is a pretty important number. A1C is an average blood sugar for the past three months. When Trey was first diaganosed he was 7.7 (or 7.8 - can't remember) which isn't GOOD, but it's not bad either. That was an average of around 187 blood sugar. Trey's A1C is 10.3. I almost fainted. That is terrrrrrrrrible. I felt so defeated! I'm very careful about what he eats, he doesn't get full carbs/sugar snacks, we balance with so much protein, I make sure he gets out and gets some exercise. I was disappointed, frustrated and sad. All his doctor said was, "He needs more insulin." I have been saying for the last couple of months that Trey needs his food ratios changed meaning he wasn't getting enough insulin as his blood sugar would hover around 250 instead of 150. Ya'all know my feelings on his diabetes educator from SF, and I was beyond frustrated with her for not changing anything for him. Now I was mad. I even told the doctor, "I have said that for two months. I do not have a degree in the medical field and I've only dealt with diabetes for 5 months, but I know my kid and I know what carbs I put into my kid and I have been asking Jenny for more insulin!" More insulin it is ... Although we have yet to hear from Jenny about food ratios. I'm confident in my own judgements now and do not feel nervous when I give him a little extra insulin to help bring him down. This is something I asked doc about and he said that yes, I can do this if I feel necessary.
We asked about the pump and doc said Trey's ready for it anytime. While Jordan and I's mind has been made up about this subject, we still had to sit down with Trey and really discuss it with him, because I refuse to do something to him that he absolutely does not want. This is HIS body and HIS disease and I have to let him have some say in it. If he doens't mind the shots, who am I to force him to wear yet another 'appliaance' on his body? We had lunch at a restaurant and Trey asked if we could do his shot in the car, instead of in the restaurant. When I asked him why, he said he didn't want people to see him do it. 1) I don't ever want him I to feel embarrassed or ashamed by his disease and 2) I totally understood where he was coming from. I told him we could do it in the car but followed it up with "If you had the pump, we could plug in your carbs and hit the button three times like Uncle Jeff and no one will even know what we were doing." That's all it took for him to say, "Yeah, I think we should try the pump." His Medtronic pump is due to arrive tomorrow, Aug 19th. We will have to be taught how to use this as it's not just a matter of shooting insulin into his tummy. We have decided to wait until after we return from Seattle in 3 weeks before we hook this up. Know that the pump is only going to eliminate his insulin shots. Finger pokes still happen, watching carbs is still a must. The pump just changes how insulin is distributed. It works more like a human pancreas. For more information, see www.medtronicdiabetes.com
If you're friends with me on Facebook, you've seen my outrage by the school system here and trying to get a meeting set up to explain Trey's diabetes, since he will be the first one in the school with the disease. It was a long few weeks planning it, but I'm happy to say yesterday we got the meeting done and the school itself along with the district signed the 504 I made up. (A 504 is a part of the ADA which protects the student. The school has to follow the 504 as it is a legal document) I am an organized person. I had copies of the 504 made for his direct teachers (although legally now each teacher has to receive a copy of it b/c I requested that), I had folders made up with information on diabetes itself, food lists, formula of carb ratios, exercise sheet, doctors orders, glucagon, emergency contacts, and more for his direct teachers. I have a lunch menu typed up with carb counts and an index card for each day to go in his lunch box for the nurse to figure insulin. I have 2 emergency kits packed full of anything he would need during the day. I have a large box of snacks for him to keep at school with the carb count written on it in Sharpie. Like I told everyone in our meeting - I want this to be as simple as it can be, even though there is nothing simple about diabetes. The only tweak we are making right now would be to have snack a half hour earlier than planned due to Trey having recess and PE back to back. This will also allow him to have a better blood sugar number before lunch. He checked his sugar in front of everyone and only two teachers cringed. I think they were all impressed with my little 5 year old kid.
So next week is the week .... The week I've dreaded for so long. Trey goes to school. My baby boy all grown up, headed to Kingergarten. As most moms of Kingergarten kids, we are nervous, but sending an 'ill' child to K and expect all these people to keep keep track of him just intensifies it even more. One thing I know for sure is he will steal hearts of school staff. His music teacher told me yesterday, "He's so brave!" And she had tears in her eyes. He is brave. He is strong. He will educate the students and staff of OM Tiffany on Type 1 Diabetes and he will change someone's life, that I know for certain.
