Summer time-The highs and Lows

Ashleigh has started 5th grade and we are finally into the swing of things. All of the extracurricular activities have started back up. She has got Girl Scouts and dance, not to mention whatever other activities she wants to do. We also just had an awesome T1D play date this past and an A's game with JDRF(Juvenile Diabetes Research Foundation). The A's game was awesome! we got to meet Ryan Dull.

Here is a picture of Ashleigh on her first day of 5th grade, her last year in elementary school!

On  September 8th, We went a spent a day with the Oakland A's! The game was great, we met lots of great families, and we got to meet A's Pitcher Ryan Dull! When we arrived the JDRF Staff was happy to see everyone and educate everyone about T1D. We got our T-shirt for Ryan Dull to sign and walked around the stadium. Here are some fun photos of the day!

On Sunday the 9th we had a T1D play date at Memorial Park in San Ramon, There was 15+ families there! It was a lot of fun and my daughter enjoyed meeting kids that were just like her!

I had what I thought was a parenting win(good night with a great number), followed by a horrible night that almost landed us in the ER. Ashleigh's blood sugar was low and would rise and then fall and rise and fall. even after talking to the Doctor at Children's and administering glucagon  she was still going low, finally around 10pm her blood sugar decided to go up and stay there. You can see from the picture below how low she was

A couple nights later she had a blood sugar in the stayed within her range most of the night!  I call that a win after a night of lows.

Greater Goods- Perfect Portions scale

Let me tell you about this scale! This has made Ashleigh's life way easier. She simple looks in the book for the code, types it in the scale and it shows how many carbs are in what she is eating! This scale has helped her be more independent in her diabetes management.

It's small enough to just stick in a drawer or on a shelf in the cupboard. with the glass surface, it is super easy to clean. The only down fall i found was that the food code book has everything you need but in sometimes random categories, I went and made a spreadsheet of all the items in alphabetical order(Waaaaaay easier for me).

Off to camp!

And just like that she is gone! my baby is at sleep away camp for the first time and boy do I miss her! She is at a camp call Bearskin Meadow in Kings Canyon Sequoia National Park. Bearskin Meadow is a week-long camp filled with adventure, fun and friendship. Campers are grouped with kids their own age and two to three counselors. In addition to diabetes education, the kids enjoy classic camp experiences, such as swimming, nature, arts & crafts, sports, games, dance, overnights, campfires and more! I know she is having a blast and enjoying every minute. Here is a photo of her with her deck mates and counselors! You read that correctly, Deck mates...they sleep on an open air deck.

When we first pulled up to camp, we were greeted by all the counselors cheering and clapping! We met one of Ashleigh's counselors, Emily, who walked us through the sign in process. Ashleigh was super nervous and didn't want to stay, she wanted me to take her home. Emily saw that Ash was upset and went to speak to her and calm her down.  Once I got her situated and her bed picked out and made he was ready for a fun time and couldn't wait for me to leave! 

It was hard the first 2 days of her being gone, I don't know if it was because I was worried something would happen to her(diabetes related) but, I remembered that all the staff and counselors are all either Type 1 or have been trained in diabetic care and the camp has been uploading photos of all the fun activities that they have been doing.  

They still have so much left to do like Overnight camping trip, a night hike to Cathedral Dome, and the camp dance party! This has definitely showed me how strong Ashleigh really is, to leave home for the first time to go to sleep away camp in an unknown territory with no one she knows, but they all have 1 thing in common, Type 1.I am sure Bearskin Meadow will become her tribe and a place she will want to go for years to come.

She will be home Friday and I can't wait to hear all about camp!I can't wait to hear about all the adventures she had and the friends she made! 

Here are some pictures of the fun She is having at camp, lets play "Where's Ashleigh?!" see if you can find her in the photos below

Meeting with the Congressman!

What a great day! Ashleigh was asked by our local JDRF chapter to meet with our congressman, Mark DeSaulnier. Ashleigh and 2 other kids along with JDRF and the children's parents got to join. This was an important meeting as we all got to talk about what it was like to be a parent of a child with T1D and then the kids got to talk and say what its like living with T1D. We talked about the SDP and how its important to keep funding it. For those that don't know, The Special Diabetes Program (SDP) is a critical program that provides $150 million annually for type 1 diabetes (T1D) research at the National Institutes of Health (NIH), the country’s premier medical research agency. The SDP was renewed on February 9, 2018 and will expire on September 30, 2019.

In June 2016, Senate Diabetes Caucus Co-Chairs Susan Collins (R-ME) and Jeanne Shaheen (D-NH), and Congressional Diabetes Caucus Co-Chairs Tom Reed (R-NY) and Diana DeGette (D-CO) invited their colleagues to join them on bipartisan support letters to Senate and House Leadership recognizing the important contributions of the SDP. Thanks to the dedication and persistence of JDRF Advocates – who met with, and contacted their U.S. Representative and Senators, asking them to sign the SDP support letters – we achieved amazing results this year with 75 Senators and 356 Representatives signing on!!! This was a great success!

Dexcom G6, what a lifesaver!!

Where do I even begin?!? For the last year my daughter has been using the G5 system to monitor her blood sugar. This has been a battle every 7 days when it came time to change the sensors, the needle is scary to an 8 year old. It always ends in tears and her telling me that I hate her...I mean look at this, wouldn't you be scared?!
 For anyone who doesn't know the picture below is of the G5 system. the packaging for the sensor was bulky, You remove the white adhesive on the bottom and place on stomach, arm or some people put it on the thigh. You break off that plastic clip then push the needle down and then pull back up to insure it was administered. Ash always fought us on putting this on cause it hurt and the "clicking" noise scared her. I am glad that Dexcom has updated the systems and we are so happy to have the G6.

Flash forward to this weekend, we received the G6 just in time for her site change. We opened the package and this is what we got:

We got a new receiver(kind of looks like a blackberry), new transmitters(the little box up top) and new sensors(the box on the right). The new sensor may look intimidating however, you simple push the orange button and the sensor is attached to the body. For the first time in a YEAR my daughter wanted to put the sensor on herself!!! She said "mommy can I try it?" We prepped the site together and she placed it where she wanted it on her stomach and then simply pressed the orange button and guess what..........SHE DID IT!!!!! no fight no nothing!. That sensor is about half the size of her old one(the G5  transmitter and sensor) take a look at this picture for comparison!

You can see the size difference between her old one and her new one. She is in love with the G6 because it thin and sleek, not as bulky under her clothes. I am so happy that she does this her self, another step in the T1D independence. I can not thank Dexcom enough for coming up with a new type of sensor and transmitter, and for helping my daughter gain more independence.

Summer time!!!

It has been almost 5 months since I last posted, it's Crazy how life is. I have been so crazy busy with trying to finding a job(which I am happy top report, I have found one!) and Ashleigh in and out of the hospital due to crazy HIGH blood sugars!
YAY! for summer time! warm weather, pools, ice cream, beaches and other fun things happen during the summer. Ash had a seemingly good school year. We had some ups and downs related to T1D, A hurdle that I am sure we are not over yet. We got a full time nurse at her school so no more changing of nurses every week!!! A lot has changed from the first day of school photo below. She no longer wants to be a computer technician, she now wants to be a veterinarian and save animals, she has gotten taller, I am sure she will be my height or taller in the near future! LOL
Ashleigh said good by to 4th grade and will be a 5th grader in August!

We kicked off our summer by attending the JDRF gala in May, that was lots of fun!! I think the biggest highlight of summer so far has been the event were Ashleigh got to meet American Ninja Warrior Kyle Cochran! What an awesome experience and he was such a nice guy! The event was held near Stanford university, Kyle came out to do obstacle courses with the kids and talk to them about how he was the first American Ninja Warrior to be public about having T1D during the event! He was so inspirational to all the kids, he told them they are not different and that they can do anything they put there mind to!, yes they have to check there sugars and if they don't feel well, take a break, check and correct the issue and then get back out there. Ash had a lot of fun despite it being super hot and her feeling weak, she drank lots of water, cooled off and got back out on the field to enjoy the obstacles, she even challenged Kyle to see if he could be her time on the obstacles!
Here is a collage from that day:

Ashleigh  will be attending Bearskin Meadow camp in the beginning of July, a camp for children and teens with T1D. As She is super excited to go to camp, I have my fears. I worry if she will be okay, she has never been this far away for 8 days! What if her pump malfunctions, what if her Dexcom stops working. I rely on her Dexcom and pump so much, I know she we will in good hands with all the staff that will be at camp. Another update, Ash and I have a family interview next week for her to get a service dog! This is definitely the next chapter in our T1D journey!, we are beyond excited for this opportunity as this is another way for Ash to have more independence! The fist step is the family interview and then they will keep her involved by letting her come and walk the dogs and bathe them. I can't wait to update about how the interview was and how camp was! Ashleigh's 10th Birthday is coming up, my baby girl will be the big 1-0!!

What its really like to parent a child with a chronic Illness

As a parent, you try and control certain things your child does, take off their shoes before they go inside, finish their homework, brush their teeth. But then something comes along, out of the blue, that makes you realize you have no control at all.....This happened to me at the end of March 2017, when my then eight-year-old daughter, Ashleigh, was diagnosed with Type 1 Diabetes.
It was a day like any other, not to cold not to warm. It was late March, I got a call from Ashleigh's school saying that she had gotten sick and I should come get her. I took her to the doctor and they originally thought it was a stomach bug as it had been going around her school at that time. They told me to just give her fluids and watch her over the weekend. Flash forward to Monday, she made it through the weekend with no more signs of being sick, so back to school she went. At 9am I got a phone call from the school telling me that she threw up on the school bus and that I need to come get her. I promptly made an appointment with her doctor and headed towards the doctor's office. It was at this point that one of Ashleigh's teachers sent me a text saying "Just so you know Ashleigh has been asking for a lot of water lately...it could be anything but please inform the doctor." We get to the doctors and I am still thinking she has a stomach bug or she ate something that didn't agree with her. When I tell the doctor what the teacher had told me, you could tell the mood changed in the exam room. They ran a couple tests and left us waiting for results. They came back into the room and told us Ashleigh'S A1C was at 12 and that we should head to Children's Hospital Oakland right away as the doctors office had called ahead and are expecting us.
I went through a wave of emotions, fear, sadness and anger all while holding it all together for my child so she wouldn't get scared. Parts of me wonder why I didn't notice the signs earlier. She had been drinking a lot, using the bathroom, sometimes wetting the bed and constantly tired, I just brushed it off as nothing. Boy was I wrong.
Upon arrival at the hospital, they checked us in and got us settled in the triage room to examine and assess again. After what felt like HOURS we finally got up to the room we would be staying in for the next few days. We were greeted by some of the nicest nurses EVER! the staff and nurses at Children's Hospital were amazing, they made us feel at ease and showed Ashleigh the classroom and the library. They helped Ashleigh and I understand what this new diagnosis meant. The support they gave to us was more than I ever expected. We were at the hospital for four days, during those days we were taught how Type 1 effects the human body, what to do in case of unforeseen emergencies and how to effectively deal with those situations. It was a lot of information and sometimes difficult to take it all in but they always assured us we were doing great.
The amount of support we got from the staff after leaving was great as well and made it easier to transition from the hospital to home. I watched my child's innocence walk out of that hospital room door, knowing that we were going to have a new "normal". Fighting with a child to give insulin injections is very hard, because at eight years old you don't really know what death is. As a parent explaining to a child if they don't take this insulin they could die and no longer be with me is devastating. In the beginning I found myself being a "helicopter parent" making sure she was still breathing when she slept, watching her every move wondering if her glucose levels were normal.
Just when I think I have a grasp on her glucose levels, something as simple as a common cold can change her levels fast, that means lots of finger pricking and checking urine for ketones.
Most recently Ashleigh wasn't feeling well and starting vomiting and had a fever, so I took her to the hospital. After a few hours it was determined that she had the flu, they prescribed an anti nausea medicine and sent us on our way. Just as she seemed to be getting better, I got a call from her school saying she wasn't feeling well and asked if I could come get her. I called my mom(because I was at work and she was available) and she went to pick her up. My mother is very familiar with how to do finger pricks and count carbs so letting my child go with her was somewhat easy(Type 2 is different from type 1). My mother called me around 3 and told me that Ashleigh wasn't feeling good and she had no fever but her glucose was through the roof.                           
I had my mom make sure that Ashleigh's hands were washed very well and check her again, same number. I had her wait 1 hr and check her a third time, I told my mom if she is still reading 600 to take her to the ER immediately and I would meet her there. Well they went to the ER and I met them there, after HOURS of sitting in the ER they moved us upstairs because they said she was in mild DKA(for those who don't know DKA is Diabetic ketoacidosis, a life-threatening condition that develops when cells in the body are unable to get the sugar (glucose) they need for energy because there is not enough insulin.). There is no manual in the world that will prepare for this illness.
When she was first diagnosed a year ago, I found myself crying before she woke up or after she went to bed. My social life has changed since her diagnosis, I cant just call a babysitter or drop her off with a friend so I can go out with friends. Ashleigh's Diagnosis also meant she couldn't really do sleep overs unless I was 100% confident that the parent was trained well enough on my child's pump. Ashleigh has shown me what true strength really is. Although she has a chronic illness she is still worried about everyone else and there well being, she is the most thoughtful girl I know. Through this diagnosis a year ago I remind myself that my child is more than a chronic Illness, she is thoughtful, energetic, determined, smart, independent, fearless, a dancer, down to earth child. Most importantly, she is my everything.
Living with constant finger pricks, extra supplies, in case her pump fails and making sure you have enough supplies isn't always easy but I take it in stride and so does she.