We were told that Logan has a 1 in 20 chance of developing diabetes. Hopefully this is not the case, if it is he will be well armed with knowledge and experience. He has been an amazing big brother from the day Ava was born. Caring, helpful, patient, and most of all loving. I am pretty sure Logan would take a bullet for Ava, especially now. All of us have an innate need to protect her but at five his want to help her amazes me. He is always asking “how many carbs does blank have” or “can Ava have blank” before he even request to get it for himself. He has graciously given up his previous graze as he pleased life style to help her stay on schedule and patiently waits till nap or bed to indulge in treats that Ava cannot have. To be so understanding of all of this at such a young age is a blessing in itself. We always thought Logan was special in a lot of ways but now he has proven it! I can’t imagine how hard it must be to have so much attention surrounding his little sister but he has handled it well (as I am sure we tried to make it that way). I will always be grateful for Logan and everything he has contributed to this family already and for the protection he will forever provide for Ava . I certainly hope he continues to ask questions (which occurred to me as a child he will ask anything, which most people are afraid to do) and I hope he feels comfortable with Ava’s disease and knows how much his little sissy appreciates all that he has done and will continue to do as her big brother! Logan we love you, think the world of you and couldn’t ask for more! Keep it up buddy!
Sunday, July 25, 2010
I think are caught up to present for the most part I know there are lot's of things I missed( I will hopefully be able to get back to those) but the most important and basic details are there :)
Our daily routine at first seemed extreme and over whelming. As with most things it is getting easier with time.
6:30 am check Ava's blood sugar (we use a lancet and the contour glucose monitor)
Feed her breakfast consisting of 30-45 grams of carbs
Give her Novalog (insulin,shot)
9 am feed Ava a 15 gram carb snack (she loves light yogurt!)
12:30 check BS again(Ava's insulin is based on a sliding scale, see below, and diet)
Feed her lunch 30-45 grams of carbs again
Give her Novalog
4pm snack 15 grams of carbs
6:30 pm check BS feed her dinner and giver shot
8pm snack and lantus shot
10 pm check BS (this is temporary till we start to see consistency)
Our basic routine includes about 4 to 10 finger pokes depending o our comfort level with her BS and at least 4 shots a day. There is a rare occasion where there is 5(emergencies only)
Andy and I work FULL TIME so Ava spends 8 to 6 at grandma and Papa's during the week so I am constantly calling and checking just for my own sanity. My mom has been a lifesaver in all of this, her comfort level is still building but I trust her with my children and honestly she probably cares for them better then I could :).
As you can imagine a toddler with diabetes learning to talk poses a lot o f issues she doesn't comprehend everything. She doesn't know when or how to tell us how she is feeling. She doesn't understand why she needs to eat all her food. Or what is truly happening to her.All these things are challenging a long with the normal daily challenges. Grocery shopping has taken on a whole new form as we learn what foods she will or won't eat. Reading ALL labels for serving size and carb count. We haven't had to deal with any illness's yet(knock on wood) and we have managed to keep her out of the hospital so our daily routine and common sense must be working ;)
So there we were finally figuring out Ava's diet and insulin getting into a routine and starting to see consistent blood sugar levels. When for no reason we can figure out her blood sugar starts dropping dramatically overnight. so we call our Dr and they advise us to change her lantus dose (this is her long acting insulin that she gets at night) to the morning to help the drop at night. We did this for a couple of days with NO improvement. Ava was waking up with BS in the 50's or even 40's, luckily she was waking up. I was terrified at night taking her blood sugar at 10 pm (our normal routine) then waiting and taking it again to see if it was going up or down. In the cases where it was dropping we were having to get her up and get her some apple juice to get her BS up again. So we call the Dr again and for the next week or so we start to cut back her insulin to the point of giving her one shot a day. Now from what I understand the honeymoon period it greatly welcomed, but in our case we wanted it to GO AWAY....our daughter was constantly fighting low blood sugar (hypoglycemia) I was not sleeping, fearing she wasn't going to wake up. We spent 2 weeks with out any insulin which really was devastating to the progress we had made. We were so new at giving shots and finally got in to a routine that Ava was OK with so I knew when it was over (however long that would be) that we would have to start over again! We also happened to have our first REAL Dr's appointment in Portland at Legacy Emanuel Children's Hospital in Portland(yes we travel to Portland for Ava's care as there is no pediatric diabetes specialist near where we live). So all seemed to be going well her A1C levels seemed to be improving and again we were so lost we weren't sure what to ask :( This wasn't the honeymoon period that we had hoped for. There was a lot of grief that we had gone through and a part of us had some false hope maybe it was a fluke and there was something else going on NOT DIABETES. But we had done our research and knew better then that. This none insulin lifestyle only lasted 2 weeks and as quick as it came, it left. Ava was spiking up into the 3 and 400's almost over night. Dr Snyder was surprised at how quickly the honeymoon came and went. We were relieved and prepared to start over. We were advised to call every day to adjust her insulin. So far we have been having a lot of inconsistent BS levels and Dr Snyder said that basically it is as if she is newly diagnosed(boy does it feel like it) The good news is we haven't been below 100 but we have seen 435 which prompted and emergency call an a quick fix. I am lucky to say that Ava responds well to insulin(as I am sure most diabetics do) and now that we have been back on for a a few days she seems to be getting better at accepting the fact that this is her life.
Saturday, July 24, 2010
Because of Ava's age we were admitted straight to ICU. It is a scary place to be but once again Ava was able to be the shining light(people came by our room just to see her smile!). We were all terrified, my son was left at my in laws. Our new puppy was home alone and we had no clue about diabetes. So here we are not knowing anything not even what to ask while our daughter is being hooked up to all sorts of tubes and monitors and still NO FOOD. They told us if her BS(blood sugar) is lowered to quickly it can cause brain hemorrhaging! Scary. Luckily she hadn't eaten and when they were about to start the insulin drip her BS level's had already started to drop. So she was given an unknown (to us) amount of insulin and monitored all night long. Andy(the hubby) and I had very little sleep we cried a lot and grieved the loss of our daughters "normal" life. We still had no answers and were told we could be in the hospital for about a week! Ava reacted great to the insulin shots and was fed breakfast the next morning and later that day we were moved up to the pediatric floor. We got to see Logan(our son) that afternoon and he seemed to be ok with all that was happening at this point. We spent all of Memorial weekend in a small hospital room learning the basic care of our daughter, diet, blood monitoring and insulin. We were told we wouldn't leave till all our questions were answered and we were able to care for her at all times. Andy and I picked it all up quickly (we were terrified, but had to do it for Ava) there were a lot of ups and downs as there always is with a newly diagnosed child and for Ava to be so young is considered fairly rare. By Sunday afternoon were were ready to go home after a hefty bill at the pharmacy we had more diabetic supplies then we could have ever imagined and some (emergency insulin) we will hopefully NEVER have to use.
We packed up our little girl her amazing pile of gifts, balloons and bears and took her home. It was good to be home but none the less terrifying. We were ready to get on with our new life and get this under control. It wasn't easy, still isn't and we continued to struggle again once we entered the "honeymoon" period....
It was April 2010 the day of her 2nd Birthday Party that I started to notice something wasn't right with Ava. She doubled over at the window in her sweet Minnie Mouse birthday outfit complaining of tummy pain. I hugged her tight and asked if she was OK, she sat for a moment pondered the question and said "Ava OK". We seemed to get by with bizarre occasional tummy pains and headaches for 2 more weeks(chopping a lot of it up to potty training and to her new sleep schedule). About mid May we noticed some excessive bed wetting, and more sleeping. It started to really bother me that she wasn't being her spunky, sassy self. At this point I started to wonder if it was a food allergy or growth spurt. 10 more days go by, my mom (my mom is our day care provider,luckily!) and I are really bothered by her behavior, excessive thirst, lack of appetite, lethargy, soaking through her diaper,sheets and PJ's at night that I decide to take her in thinking it was a food allergy or perhaps something to do with potty training? May 27th 2010 I decide to stay home with her for the day as she wasn't appearing to feel well at all and her appointment was that afternoon. By noon of that day she had drank a GALLON of fluid(no joke!) and begging for more. I was anxious to get her in and started to Google all of these bizarre happenings and came across the symptoms of toddler diabetes and wouldn't you know she had EVERY one of them. I was taken a back and tried to forget about it and see what her pediatrician had to say. We get there explain what's been happening to the nurse and with out a breath she decides to test her blood sugar and sure enough it was 440 (and that was with out food for about 4 hours) We were sent straight to the hospital and that is where our journey began.