I am going to have to finish Angelina’s diagnosis story later. So much has been going on that I want to focus on more recent events for now.
When we were in the hospital our diabetes educator had me fill out a JDRF form to sign up for the family mentor program. It was optional, but I figured it couldn’t hurt and if it didn’t end up working out we wouldn’t be any worse off than we already were. I am SO GLAD that I filled out that paper!
Angelina had her first pediatric endo appointment last Thursday and her dr asked what kind of support system we had in place locally and I told her it was pretty much just us. Me, my husband and Angelina. We don’t really have any friends or family in the area. My mom did live locally, but recently moved about 5 hours away and while she usually has great intentions a lot of times I just get frustrated with her off the wall advice. Anyway, the dr said that she knew someone who was involved with a local support group and she would get back to me with the person’s information.
Later that evening I got an e-mail from the dr with the person’s facebook contact info and I was able to add her. I didn’t hear anything that night, but I figured not everybody lives on Facebook like I do. 😀 I looked around her page a bit to see if there were any groups or pages that were obviously T1 related that were public that I could browse through in the meantime. I found our local JDRF chapter page and went through their events and discovered they were having a parent’s coffee the next evening so I signed up to go.
Then Friday David and I went out to lunch and my phone rang. Turns out it was our mentor mom from the JDRF program and she wanted to touch base with me and invite me to a JDRF parent’s coffee that evening that she was hosting. (The same one I had already signed up for on facebook.) When I got off the phone with her I realized that the other woman on facebook had sent me a message with the same invite for coffee, but that she wasn’t going to be able to make it and also told me to contact her friend, who happened to be the mentor mom I was just on the phone with! Talk about serendipity! It was just one more of those weird moments since the beginning of this journey where there are just so many coincidences or the timing on things is just uncanny (I’ll get into that more in a later post).
We went to the coffee and met up with our mentor mom (I’ll call her C). We were the only ones there for a little while, then another mom from the group showed up as well. It was a nice cozy little gathering and it felt really good to talk and ask questions of been there, done that moms. Angelina was pretty well-behaved but was getting antsy so she and David took off for a little while and went to the sporting goods store to get a new tube for his bike tire. We ended up being at the coffee shop for almost 2 1/2 hours total. It was another serendipitous meeting though because there is a local group for type 1’s who organize a lot of outdoor events like hiking, kayaking, etc and they were having their monthly hike on Saturday. David (hubby) has been trying to get me to go hiking for a few weeks now but I am not a huge fan. He wanted to go hiking this weekend and I wanted to meet more T1 parents and have Angelina have the opportunity to meet some T1 kids so we decided to go. Again, the timing was uncanny because David was planning on hiking over the weekend and this group just happened to be having their monthly hike the next day.
I went home and found the outdoors group on facebook and signed us up for the hike. Saturday was pretty overcast and a little chilly but we decided to go for it anyway. It ended up just being us and two other families, so 6 adults and 4 kids total. It was honestly perfect! Of course all the other kids were boys and 2 of them were older than Angelina (I think they’re both 11) and 1 was younger than her by a couple of years, but she still had a great time. It was pretty interesting to see how her blood sugar levels changed so drastically with the exercise too. Part of the group “ritual” is all the t1’s check their blood glucose before starting the hike so if they’re on the low side they can eat some carbs beforehand so they don’t get hypoglycemic during the hike. Well, in anticipation of her burning off a ton of sugar I had given her about 15-20 uncovered carbs(meaning I didn’t give her insulin for them) for breakfast about an hour before hand. Her BG (blood glucose) was 351 before the hike! I knew it was artificially elevated because of the uncovered carbs so we were good to go. We did a pretty gentle trail through some foothills and it was about an hour and a half total time there and back.
After the hike we decided to grab some lunch downtown near where the trail was. When she checked her BG it was 89! Of course, part of that could be because she is in what is called the “honeymoon phase” of her diabetes. Basically the beta cells in her pancreas are slowly being killed by her immune system, and in the beginning when her blood sugars were really high the beta cells that are still alive get so overwhelmed with the glucose in her system that they stop working for a period of time because they just can’t keep up. (At least that is my understanding at this time). After a couple of weeks of being on insulin and her bg levels getting back down to a normal level the remaining beta cells start working again, except she’s also getting artificial insulin so it’s more likely to see lower numbers and have hypoglycemic (low blood sugar, less than 70 mg/dl) episodes because you can’t really calculate how much or when the beta cells are going to produce insulin.
Luckily her dr had told us to watch out for it and that we might have to lower her insulin dose around now, so we were prepared. Her BG was under 100 all of Saturday (with the exception of the 351 reading from uncovered carbs) and then only slightly higher on Sunday so her dr emailed me Sunday afternoon to lower her dose of Lantus (which is a long acting insulin given once a day before bed and is supposed to mimic the natural release of insulin over the day, to keep bg level not accounting for food consumed). She is already on a pretty low dose of her fast-acting insulin (Humalog) as well, so we are just keeping a close eye on her numbers and I have been in email contact with her endo on a regular basis so if anything needs adjustment, we’re on it!
Then Sunday there was another JDRF event (this one mostly for the kids) at a local trampoline place. We almost didn’t get to go because we were cleaning house in preparation for family visiting in 2 weeks and Angelina also had some homework from earlier in the week that needed to be completed. Her ADHD was in high form which means she looked busy for 2 hours, but got only a minimal amount of work done. I finally set down with her when it was time for lunch and told her she needed to make up her mind about whether she really wanted to go or not because if we were going I was going to give her less insulin so she wouldn’t get low while we were there, but if we weren’t then she needed her normal amount to prevent a high. She did her normal sulky thing and finally said that she was really going to try to get everything done. So I gave her some uncovered carbs and let her finish her work. The event started at 3pm and was about 15 mins away from home. She got done with her work at 3:30pm after putting in supreme effort. So she and I went and had a great time. Her bg was around 165 I think on the way there so I gave her a glucose tablet to bump her up a bit because I knew she would rip right through those carbs jumping on a trampoline and running around for an hour or so.
She also ended up eating an uncovered sandwich (which was maybe 30-40 carbs) around 4:30pm which also was pretty much completely burned off by the time we left. She had a great time though and seemed to really hit it off with C’s daughter, which C and I had discussed probably being the case. The girls are a month apart in age and just seemed to have so many personality traits in common I figured they would either end up being best friends or worst enemies, lol. I was glad to see that so far it seems to be the former and not the latter.
I also got the chance to chat with C a little more, although it was pretty crazy in that place (as you can imagine) so mostly small talk. I also briefly met a few of the other parents, although I don’t think I could name them.
All in all, we had a great adventure filled weekend and I am starting to feel like I might actually make friends here in CA. And not just friends, but friends with kids who are like mine and can relate to what I’m going through, even though we may not be the same age.