So we are in our 4th snow day and the girls are beginning to go a little stir crazy. Nikki actually just had an argument with her dog if that tells you anything. Amber is now officially melded with her cell phone and texts even when she doesn’t know she’s texting. I’d say we are ready to get back to routine.
The good thing about all these snow days, aside from the fact that we get extra days off, is that Nikki has had plenty of time recover from the UTI without having to miss more school days. She is feeling much better and is ready to get out of the house – which I am officially not allowing until I’m 1000% sure she is better.
The snow also caused us to have to reschedule her ENT follow up appointment until next Wednesday; so we won’t know the results of the cat scan until then. Other than that, there isn’t much new and exciting to report – which I find very comforting.
Thursday, January 29, 2009
Monday, January 26, 2009
So here I go blogging for the 3rd time today – but this was too good to wait! In my earlier blog I indicated that Nikki has a UTI and that the doc gave her something for the pain when she uses the restroom. The med is called Pyridium and it turns urine orange, which I forgot about.
Anyway, we just checked blood sugars for dinner and, of course, Nikki is still struggling with high numbers (308, 309 and now 385) –even after a site change this afternoon. I told her to go on and test ketones just to be sure before we eat dinner. A few minutes later she yells “MOM, I can’t tell”. I’m thinking ‘what do you mean you can’t tell’?
Now, here is a tip that all us T1 parents/caregivers/people need to remember. When you take Pyridium for a UTI you cannot test ketones. The entire strip turns ORANGE and this is not a choice on the test strip. I’m thinking it would have been really dark orange if she had ketones – so I’m going with negative. Guess we won't be testing ketones for a couple of days.
It seems that Nikki has a UT infection at this point – however, the doc did send samples off to be sure. She is on another new round of antibiotics and something to help with pain. She is just getting so worn out from the continuous illness – it’s really taking a toll on her body and spirit. As long as we don’t get so much snow that we can’t get there, Nikki’s ENT appointment is tomorrow afternoon and I’m hoping that will give us some answers for all the sinus problems.
Prayers are more than appreciated and coveted!
We started the morning off with a snow day – which is good. But Nikki woke up around 9:00 a.m. SCREAMING and crying that her side hurt and she couldn’t move. She wasn’t just fussing; she was really crying which is completely out of character for Nikki. Bryan, Amber and I sat with her for a few minutes, then Bryan went off to call Troy (doctor) and find out ‘what now’.
In the meantime the pain is subsiding but I noticed that she was really flushed. So Amber went and got the thermometer for me – she has a 101 fever. Bryan gets a hold of Troy (who is actually in the hospital himself with some minor medical issues) and he wants her to go see Craig (other doctor) – so we are taking her in at 12:50 this afternoon.
I’ve given her some ibuprofen and even after having that in her system for about 2 hours, her fever is still right at 101. She is just so sick of being sick and I’m honestly beginning to get really worried. Our ENT appointment is supposed to be tomorrow – oh well, one doctor at a time right?....
Wednesday, January 21, 2009
Nikki had her CT scan this morning. She was nervous when we arrived. You can tell when Nikki is nervous because she gets VERY quiet, which is saying a lot because Nikki is a quiet young lady pretty much all the time. Other than the fact she was uncomfortable, she said the CT was a piece of cake. We won’t have any results until next Tuesday. Nikki’s one question this morning was “what are adnoids and if everyone always has to have them taken out, why do we have them to begin with?” ROTFL.
I don’t know about anyone else but I am so tired of the whole election thing that I can’t stand it. I’d like to turn on the news and see something besides that – there are other issues affecting our country. Without saying who I voted for or why, I want to tell you another Nikki story. Yesterday her class was watching the inauguration coverage, which most of the kids were not happy about; I believe for 2 reasons. Reason 1 would be that the majority of her particular class has parents who voted for the other guy and Reason 2 they are 10 and 11 years old -- and no matter how important yesterday was they would rather have been watching Drake and Josh. Apparently one of the young men in her class was not at all happy with O and when he came on the screen he whispered “I wish he would just die!” Nikki was appalled. She looked at this young man, who is a friend of hers, and said “He is a DADDY! You can’t wish for his daughters to not have a DADDY!” which silenced any more remarks of that kind. I’ve talked with my girls a lot about politics and the election lately, and wishing O dead is a subject that we have touched on here at home. However, you never know if your kids are actually listening to all the wonderful things we parents have to say. I’m very proud of her for making a stand and seeing things far beyond politics – maybe we should let the kids of our nation decide government policy huh?
Tuesday, January 13, 2009
I'm just back from the doc - we were there 3 hours and most of it waiting!!! Anyway, Here is the scoop - we still don't know anything :D seriously.
Nikki has been on an antibiotic of some kind for a month now and with all that she still looked really bad around her sinus cavity. They numbed Nikki's nose, nasal cavity pretty far in (and her front teeth which were a casualty not the main target) then the doc ran a tube up her nose to look at the adenoids and as much as she could see as far back. Nikki's passages are swollen and infected but not as bad as if she had not been on antibiotics.
The doc wants to get a more specific look at her sinus passages, the back back I guess (medical term there) and so we have a CAT scan scheduled for next Wednesday morning at 9:15. Then the following week on Tuesday we will go back to the doctor.
In the meantime Nikki is on a steroid nose spray 2 times a day for a week, then 1 time a day for a week until we the doc again. She said the swelling has to go down so she can get a better look at things. So, we wait. Nikki will return to school tomorrow and we'll just go a day at a time - the doc thinks the nose spray will help her a lot with the general pressure.
I'll keep everyone posted as soon as I know anything, which appears won't be for 2 more weeks -
Thanks for all the prayers - Nikki was in a goofy mood today - not nervous or worried at all - just a little annoyed that her 2 front teeth are numb :D God is good and so are all of you.
Monday, January 12, 2009
I decided this morning not to wait until tomorrow (which would be Tuesday) to let the doctor know that Nikki’s sinus infection is not getting better. They were on top of things really well and called me back this afternoon to tell me they wanted me to take Nikki to the ENT tomorrow afternoon at 2:45.
I’m hoping that this may be the beginning of figuring out why she’s so sick in the winter months; and that it’s going to help us fix the problem so that we get better A1c’s. I'm also hoping this is the first step in helping her feel better on a daily basis.
I’ll keep you posted ……
Thursday, January 8, 2009
I took Nikki to the doctor today: SIDE NOTE - it was great we had a snow day because that's one less day of school she missed.
Anyway, he looked back over her records for the last 3 winters and now wants her to see an Ear, Nose and Throat specialist. He thinks she may have chronic sinus infections. She's had the current one for over 3 weeks now and we are on our 3rd round of different antibiotics.
He wants me to give the new meds until Tuesday; that way he will know for sure that antibiotics aren't kicking it and insurance will cover everything appropriately (don't even get me started on INSURANCE). It will also confirm his suspicion that she needs to see a specialist.
He asked Nikki if that was okay with her - to see an ENT - and she said "it's just another doctor, it's okay" and she went back to playing her D.S.
She's lost weight since our last visit 2 weeks ago and that's because her blood sugars have been running high due to the constant infection. She's looked pale and run down for so long to me, like in the above picture - okay this is me starting to worry, so I'll turn that switch off for now.
Just wanted to let everyone know what's going on.
Monday, January 5, 2009
What does the word diabetes mean? Lately, several of the young ones in the T1 community have wondered why their condition has the word ‘die’ at the beginning. No Sugar wanted to know that also, so we set out to investigate. Ironically, our blog turned out to be appropriately named: Naturally SWEET, No Sugar Needed.
The term Diabetes Metillus has its origins in the Greek language. Diabetes means to ‘siphon’ and Metillus means ‘honey or sweet’. It was given this name because of the amount of urine a diabetic will pass when blood sugars are elevated and because of the strong sweet smell of that urine; in other words ‘sweet urine’. (Well you asked).
So the good news is the term has NOTHING to do with dying in any way. As parents of T1’s and T1’s personally know, this illness is scary enough and has enough to do with life and death that we don’t actually need to the term itself being named after death.
I also wanted to share a couple other facts with you. Insulin was discovered in 1922 on accident – which is usually the way wonderful things happen. The names of the scientists who discovered it are Banting and Best. They discovered that this special chemical or hormone can help replace the natural hormone the pancreas (from the Greek, meaning 'all flesh') is no longer producing. It is not a cure, but it is life support. This type of research is called Endocrinology; and that is a term we are all too familiar with and thankful for. Incidentally, the term ‘insulin’ is Latin and means ‘island’; it’s given this name because of the way the cells in a pancreas appear.
So now we know….
Today was the first day back from Christmas break and……not a single phone call from school!!!! Yeee Haw! That always means a great day. Nikki came home feeling good, nothing bothering her and pumped up because I’m teaching her best friends class on Thursday – in other words, regular kid good mood – I love those!
She was 201 this morning, which is not great – but I didn’t have heart failure over that number. At lunch she was 175 (her Cozmo keeps track of blood sugar numbers so I can check when she gets home from school) then at dinner she was 185. Still on the high side, but I just love those 100’s.
We’ve had some restful nights and yes I’m probably jinxing myself by saying that out loud. Amber had a good day today too – it’s always nice when both girls come home from school in a good mood.
Tomorrow dance classes resume and Nikki is always excited about that. So I’m hoping that today is an indication of the rest of this week – prayers for that would be greatly appreciated. One thing I just have to mention is that Nikki wore all new clothes from Christmas today, but the thing she was most excited about was the bracelet she received from her long distance friend Kacey – from Diabetes Sweeties. Kacey’s mom (the amazing Jill) made the bracelets (2 for Nikki, 2 for me, earrings and cell phone charm for Amber) – The one she wore today is pink and says DIABETIC and she wears it with pride! So thanks again Jill and Kacey.
Here’s wishing all T1 families a happy and HEALTHY winter full of amazing numbers!
Thursday, January 1, 2009
Number 1: DON'T offer unsolicited advice about my eating or other
aspects of diabetes.You may mean well, but giving advice about
someone’s personal habits, especially when it is not requested, isn’t very nice. Besides, many of the popularly held beliefs about diabetes (“you should just stop eating sugar”) are out of date or just plain wrong.
Number 2: DO realize and appreciate that diabetes is hard work. Diabetes management is a full-time job that I didn’t apply for, didn’t want and can’t quit. It involves thinking about what, when, and how much I eat, while also factoring in exercise,medication, stress, blood sugar monitoring, and so much more – each and every day.
Number 3: DON’T tell me horror stories about your grandmother or
other people with diabetes you have heard about. Diabetes is scary enough and stories like these are not reassuring! Besides, we now know that with good management, odds are good you can live a long, healthy, and happy life with diabetes.
Number 4: DO offer to join me in making healthy lifestyle changes.
Not having to be alone with efforts to change, like starting an exercise program, is one of the most powerful ways that you can
be helpful. After all, healthy lifestyle changes can benefit everyone!
Number 5: DON’T look so horrified when I check my blood sugars or give myself an injection. It is not a lot of fun for me either. Checking blood sugars and taking medications are things I must do to manage diabetes well. If I have to hide while I do so, it makes it much harder for me
Number 6: DO ask how you might be helpful. If you want to be supportive, there may be lots of little things I would probably
appreciate your help with. However, what I really need may be very different than what you think I need, so please ask first.
Number 7: DON’T offer thoughtless 10 reassurances. When you first learn about my diabetes, you may want to reassure me by saying things like, “Hey it could be worse; you could have cancer!” This won’t make me feel better. And the implicit message seems to be that diabetes is no big deal. However, diabetes (like cancer) IS a big deal.
Number 8: DO be supportive of my efforts for self-care. Help me set up an environment for success by supporting healthy food choices. Please honor my decision to decline a particular food, even when you really want me to try it. You are most helpful when you are not being a source of unnecessary temptation.
Number 9: DON’T peek at or comment on my blood glucose numbers without asking me first. These numbers are private unless I choose
to share them. It is normal to have numbers that are sometimes too low or too high. Your unsolicited comments about these numbers can add to the disappointment, frustration and anger I already feel.
Number 10: DO offer your love and encouragement. As I work hard to manage diabetes successfully, sometimes just knowing that you care can be very helpful and motivating.
We are going on 6 years of living with this disease day in, day out, 24/7-365 or however you wish to say it. One of the most common misconceptions about type 1 is that it is not a big deal, or that it is not life threatening. It is both of those things. That is not to say that kids and adults with type 1 cannot live a full and relatively normal life - they can and do - and most of them do it better than people without a chronic illness. However, that does not take away from the enormous and terrifying things diabetics (especially children) have to face.
I always go back to seeing my daughter wandering around the hallways at school, because someone thought diabetes wasn't a big deal and allowed her to leave the classroom unassisted. She was nearly unconscious, confused and 'out of it'. She had to leave the school in an ambulance that day and go directly to the hospital - she was in the low 40's and that was after 15 carbs. Nikki still has nightmares and fears about going to sleep and never waking up.
Nikki won't let this terrible disease defeat her, but it is important to acknowledge the seriousness of the disease (and the bravery of those who have it)and not fall into the very wrong habit of saying 'it could be worse'. I guess whether or not it could be worse depends on whether or not you are actually facing a life sentence of diabetes.