Part 1: Diagnosis in June, 2011
Three months ago started a new journey in our lives. My daughter Sarah started drinking a lot, and having huge overfilled diapers. On top of that was a constant diaper rash. Constant requests for more juice/water/milk/soda (her idea of soda is about 4tbsp of soda to 1 cup of water). But Sarah was still lethargic a lot. Didn't want to go outside nor did she want to just be a little girl. Most of her days were spent in my bed, watching TV. Eating a little...But mostly..sleeping and drinking.
Finally I could deal with it no longer. She had been in and out of the doctors office for the diaper rash as it was horrible, and each time he would say to use the cream and it would get a little better, until we stopped the cream and then it got bad again.
I put all the symptoms together...hit up Google and found what I wish was better news. The first website I came across said it was likely to be diabetes. Finally I went into her pediatrician requesting to be tested for diabetes. He gave me "the look". You know the look. The one that tells you that you've spent a little too much time Googling and to please let the doctor do what he knows. Yeah well they call it practicing for a reason!!!
The doctor rejected my initial request for a test. Seriously... they told me that they couldn't test her unless she had not eaten for at least 8 hours. It had been 3 since she had eaten/drank anything so why couldn't they? The doctor said if I was REALLY that concerned I could come back the following Wednesday. I made the appointment for 9 am. My oldest daughter, then 13 at the time came with me. We went in fully thinking FINALLY they are going to test her and see that I am wrong. But something is wrong otherwise, right? Because no one WANTS Diabetes. I just wanted my poor daughter to act like a normal crazy 2 year old. Instead of the lethargic, always tired, never playing child that I had for the last 2-4 months.
Wednesday came, I took Sarah and Ashley into the room. They sent us to just a small room that isn't even where a doctor normally comes. They pricked her toe... her blood sugar registered...It was 189.. I thought... That's not real high, right? The nurse instantly looks at me and asks... You are sure that you didn't give her anything to eat or drink? I gave her an incredulous look and said... can you see she is still asleep??? No she's not had anything. The nurse runs out of the room. Minutes later she comes back and tells us to go to room 2. We trudge on over and about ten minutes later get told, "The doctor wants to see you downstairs." (what I didn't know is that the Nurse Practitioners are upstairs on floor 2, the doctors are only on the first floor) So we trudge down there. We go to sign in and the young girl looks at me almost with tears in her eye's and immediately takes me back to the doctors' rooms. Minutes later the doctor walks in... Does not look me in the eye and says that he wants us to rush Sarah home, get clothes for 3 or 4 days and go straight to PCH.
Finally we got our diagnosis and instantly we were shoved into the hands of the capable staff at Phoenix Children's Hospital. This hospital is truly a gift. The nurses were all incredibly caring. Showing us how to give our baby girl the best chance at growing up normal all the while still caring for her. Sarah was loved by each person she was cared for by. My two teenagers were invited to play and have fun with Sarah and it was overall a great stay. Although we struggled with numbers for a little while it's getting better.
We have now been out of the hospital for a week and a half, Sarah is now willing to give you the finger she wants you to poke to check her sugars. She is thriving. One night around 9:30pm I was trying to wind her down for bedtime when she was not having it. She was jumping all around, laughing and playing and being a crazy 2 year old. I thought..Oh no..her sugar must be off. I tested her blood and she was perfect. Then I had to think for a minute...oh wait..this is what a NORMAL 2 year old with good blood sugars should be like.
We are adjusting to a new normal. Instead of a 2 second check to make sure we have diapers and wipes and a cup in a bag for a trip to the store or the mall, we now have to pack snacks and water and a blood monitor. Don't forget the insulin and emergency sugar(for her its a juice box). Make sure we have enough alcohol wipes and cotton balls, Syringes and band-aids. The actual prep to just leave the house now takes 15 minutes. Luckily my teenagers are the greatest. They know all the things she can have and help to pack her up every time we leave. I honestly think my husband and I are going to truly miss the teenagers when they go back to school in the fall. I don't know how single parents do this type of thing without the help and support of a true family.
In all the diagnosis hasn't changed anything...well except our budget, holy cow are diabetic supplies expensive as heck! We are still going on vacation next month although we are probably going to end up paying for additional bags now with all the stuff she will need. But I have my baby back. My hyper, mommy loving, playing little rug rat. She's loving her daddy and running and jumping and asking to go swimming and to the park. What more could a mom as for!!
Part 2: Update
Four and a half years ago, the Hell we call Diabetes entered our life. Every day of the last 1667 days of my daughters life, we have pricked her finger, inserted needles into her body. I hate it. I hate that on days when normal kids have the stomach flu and get to sit home and lay down and sip on ginger ale. That's not an option for Sarah... She has to keep her blood sugar above 80. When you're diabetic, you do not just get to lay there, I have to force juice, soda, anything into my daughter to bring her blood sugar up into a safe range. If that doesn't work, or she develops large ketones, it's a trip to the Emergency room. Not just any emergency room, it's a trip all the way across the city..almost 60 miles one way, to the local children's hospital.
The biggest change in our life was when we got the pump 1 year after diagnosis. Sarah no longer had to have 8-10 shots a day. This made our life easier and we were able to change her basal rates (amount of insulin for the different times of day instead of having the long lasting insulin which we could not adjust by the hour.
At year 2 1/2 we purchased a Diabetic Alert Dog. This dog is our lifesaver each day she alerts to Sarahs' high and low blood sugars. More than once Candy (Hey, Sarah was 4 when we got her. And She is a Chocolate Lab, so it was only expected that Candy would be a great name) has saved Sarah's life. Candy doesn't yet go to school with Sarah as she is only 6 and the other kids in the class would be greatly distracted by Candy. We are hoping by 3rd grade, Candy will be able to go and help Sarah's school nurse and teacher to take care of her. Candy came from Tattle Tail Alert dog's in Salt Lake City Utah. Candy's Breeder is a Type 1 Diabetic herself and has been one of the most awesome people I have met when it comes to dealing with Type 1 Diabetes. The "Family" we have gained from online groups has seriously helped in dealing with this disease that is invisible to most of those around us.
Just months ago, we finally were able to afford the Continuous Glucose Monitor aka Dexcom. This is a beautiful, awesome tool, however is very expensive. and I hate it and love it. It shows when Sarah's blood sugars are going up by a system of arrows... They either point up at an angle, two up mean she's climbing, two down mean she's going down fast. one down is going down slowly. It connects to an iPhone and then transmit to my phone, the school nurses phone, Sarah's father's phone and a few others, in case of an emergency. Sarah's school nurse unfortunately, has been awakened at 4 AM more than once for Low's. However has always been awesome about it. I love that her nurse is so involved with her care.
The stress of diabetes is very frustrating, unfortunately there are many side effects of Diabetes, that are not medical. I personally gained 40lb's in the first 2 years after diabetes. My own health suffered (High Blood Pressure, Anxiety and Stress Migraines) as I have had to continue working full time and waking up 2-3 times per night to check Sarah's blood sugars. The CGM has helped to cut down the amount of times I get up at night but it still is not 100% accurate. My marriage has suffered, unfortunately at the time of this writing I am going through a divorce. When you feel as though you are doing 99% of the work for a diabetic, hard feelings arise.
Diabetes changes the dynamics of all relationships. There is no just up and leaving for a fun filled weekend. Every trip outside of the house is full of anxiety for me because of the need for supplies, insulin, test strips etc. Money...Oh boy. Recently I added up everything for 1 year of Diabetes Supplies. Without including the price I pay for Insurance, our yearly out of pocket in Co-pays, Deductibles, Blood work, prescriptions, Diabetic Alert Dog insurance, Diabetic Alert dog food/treats etc literally are around $8000 a year. That's the purchase of a small car each year almost!
Alas, Sarah is now 6, attending the first grade at an awesome school that has a full time nurse on staff (I cannot imagine Sarah going to a public school locally that does not have a nurse but one day every other week, Leaving her without a nurse is dangerous!) She is happy, healthy, funny, gregarious and so very smart. Unfortunately, we recently had a bad test result and regarding her kidneys and we are awaiting further testing to know if the high blood sugars are affecting her Kidneys at such a young age. She knows when things are rough and we just cannot afford to buy new toys, clothes or other things. Her big brother and sister sadly are jaded by this disease, they feel anger towards us as the parents that cannot afford what they used to get before this disease entered our lives 4 1/2 years ago) They are almost adults, They have had to give up some of their free time so I could pick up more hours at work, or to do more chores as their Dad and I were just too worn out from having only 24 hours in a day to get all the things done that are needed to be done.
On every shooting star, Every Dandelion that is blown on, Every lost eyelash, Every birthday candle that is blown out... I wish for a cure. Every day of my daughters short life since diagnosis I have prayed for God to help those scientists and researchers to find a cure.