Wednesday, February 17, 2010

Lilly's Journey to Diabetes...Graphic Photos

Thank you all so much for praying!! We really appreciate your love and support. I am sorry it has taken me this long to update everyone. I guess I just needed more time to process and get adjusted to our "new normal". I did want to share Lilly's journey and how she progressed to being a normal cute size to where we were 2 weeks ago. This is Lilly just before Christmas. I did notice some weight loss but just attributed it to a growth spurt. That, and in my sick way I was glad to have a thin child.

Fast forward a month and you can see how dramatic the difference is. Notice Lilly's neck and more pronounced facial features. This was at her birthday party the last weekend of January. I think maybe sometime in December or January I noticed Lilly drinking more and more water. I was happy that she loved water and didn't think much of it. She also started urinating frequently and we couldn't go anywhere that she didn't have to use the bathroom several times before leaving. I thought maybe she just had too much to drink. Jenny thought maybe she had a bladder problem. The thing is, Lilly doesn't complain, so I wouldn't know that she was sick.

Here Lilly is on her birthday, February 1st. It was a Monday. This was also Jackson's first day of public school. After we dropped Jackson off at school, Lilly, Fisher, and I headed to McDonald's for birthday breakfast. She didn't eat the eggs I prepared for breakfast. Lilly started to feel puny at McDonald's and didn't really want to play on the playground. She also didn't eat much of her pancakes. Fisher ate plenty, though, and played and got hot on the play area. We went to the restroom when we were getting ready to leave and Fisher spit up on himself. Once we got home, Lilly threw up while on the sofa. I cleaned her up and came upstairs to check my email. I heard her go to the bathroom and she vomited again. I rushed down there to check on her. I got Lilly to lay down after that and that is pretty much what she did the rest of the day. We got Jackson from school and Cory got home shortly afterward. I ran to the store to get the jelly for the meatballs Lilly requested for her birthday. Got home and made dinner. While I was gone Cory gave Lilly some cereal around 5 o'clock. She wouldn't touch her meatballs or anything else. She just layed on the couch and threw up again. Cory put her in the bathtub and when she got out she threw up three more times. I was wracking my brain wondering what was going on. I thought maybe it was something she ate, since Fisher spit up that morning. Oh yes, Jackson got pink eye Monday night, but I just gave him some of my drops. I did send him to school the next day since I was treating him.
Tuesday I called the doctor to get Lilly in for a sick appointment even though she hadn't thrown up since about 8pm the night before-Jackson also for his pink eye. Oh, let me say that the week before I called to make her 5 year well check. I mentioned to the lady making the appointment that I was concerned because she had lost a lot of weight and was drinking and peeing a lot, and she said she would make a note of my concerns. Okay, back to Tuesday. I called to make Lilly and Jackson sick appointments. The girl setting up my appointment said some snide comment about being "that mom" that sends her sick kid to school. Also, I mentioned to her about Lilly's throwing up, which was the main reason I called. I also told her I was concerned about the weight loss, drinking, and peeing. I did tell her that we had a well appt. for the 10th. She said that I shouldn't even mention my concerns to the doctor since we would be there next week anyway. Our appointment was for that same day and so I picked Jackson up from school and we set off for the doctor. Let me just interject here-I suck at picking doctors. The ob I used for Jackson let me go too long before having to have a c-section and he ended up in the NICU for a few days. She was evil in general, calling me fat and I was much smaller back then. Anyway...Get to the doctor's office and in our room. I told the nurse about Lilly's symptoms and that my husband was concerned that it might be diabetes. Then after a few minutes of waiting Lilly had to use the restroom. I asked the nurse if we would have time and she said yes, and to get Lilly to pee in a cup in case the doctor wanting to test her urine.
I gave the cup to the nurse and we returned to our room.
Finally the doctor came in. I told him about Lilly's throwing up and that Fisher did once. He said it was probably a bug, because they had treated about 15 children already. I also told him about the weight loss, drinking, and peeing and that my husband thought she might have diabetes. He did a double take, but didn't do anything about it. He prescribed some anti-nausea medicine and said he would see Lilly the upcoming Friday instead of the tenth, and run some tests then if need be. I cannot say why he didn't test her urine. I don't remember if I mentioned it, but surely the nurse would have told him?? So we left and picked up her prescription on the way home. When we got home I made chicken nuggets and macaroni and cheese. I should get Mother of the Year with that meal!! Lilly ate maybe 2 nuggets and slept on the couch on and off. She would not even play with Jackson.

This is Lilly on her birthday night. Jackson and Daddy had to help her open her gifts since she wasn't even interested.

Here is Lilly on Tuesday, sleeping after the doctor's appt. She mostly only got up to get water or potty. I took this photo to show Jenny how skinny Lilly's arms had gotten. I remember telling my Mom and friends how she reminded me of a friend we watch pass away from cancer.

Wow...this photo is hard to look at. This is Wednesday. Cory had to get off work early for me to go to an appointment and when I returned around 5 she got progressively worse. Lilly didn't eat anything that day either. By about six, she was leaning against the wall to go to the bathroom. Her breathing got labored, and she started to seem to go in and out of it, and her eyes would roll into the back of her head. I decided to call Children's Healthcare nurse hotline. I told the lady Lilly's symptoms and she said to call 911. This photo is while we were waiting on the ambulance. I called 911 again because we live near a hospital and I couldn't figure out what was taking them so long. The lady on the line told me they don't actually work out of our rinky dink hospital. Great...Anyway, they finally got here and took her to a hospital about thirty or so minutes away. Cory told me in the ambulance that her blood sugar was over 400, that their meter only went to 400. He also said that Lilly was going in and out of it and the EMS{?} kept yelling at her. The got to the hospital and took her to the pediatric er. There her blood sugar was even higher, topping out their meter. They determined that Lilly needed to be life-lighted to a children's hospital. The doctor did tell Cory that Lilly did have Type 1 Diabetes. They got to the hospital and finally my Mom got here so I could go be with them. I found out once I got there that Lilly's blood sugar was over 900 and her ph levels were below 7-some of the nurses had never seen levels that high. That is fatal. She had a severe case of DKA-Diabetes Ketoacidosis. You can google it. I know the only reason Lilly is alive and well today is all of your prayers and God. We are not "lucky". Glory to God!!

This is my baby around 1am when I got to the hospital-weighing all of 28 pounds. She was in the ICU thru Friday. She didn't care for being there one bit. In fact, when we were put in a regular room in the diabetes ward, she said she couldn't wait to go home so she wouldn't be pricked anymore and she could eat what she wanted. My heart just broke for her. I told her that wouldn't be the case. That is the hardest thing to do as a Mom, watch your child suffer and you can do nothing about it.
I'll say I don't want to be an extremist, but I have read in several publications and online that cow's milk causes diabetes and/or aggravates it. No offense to the dairy farmers of America, but I have a hard time wanting to give my children that stuff anymore.
The doctors have told us that we don't need to change Lilly's diet{somewhat relieving and alarming at the same time}. We just count her carbs and give insulin to counteract them. She is doing really well and doesn't even cry when we give her shots. Of all my children, she really is the best one to have diabetes. Not that I want any of them to have anything wrong or less than perfect. We went to the endocrinologist today and Lilly now weighs 35 pounds and is eating us out of house and home.
Where do we go from here?? How do I handle the negligence on the doctor's end?? I'm not sure, I am definitely not the sueing type, but the trip in the ambulance and helicopter could have been avoided had the doctor put a strip in Lilly's cup of urine. So simple yet not done.
Things I am thankful for...
*Really good insurance for the children. We shouldn't incur any out of pocket cost for any of this. Praise the Lord!!
*Wonderful friends like all of you that prayed and continue to pray for Lilly and our family.
*A lady from church whose daughter was also diagnosed at five years of age with Type 1-she is now 13. We met them Sunday after church and they had little gifties for Lilly and have offered to be there for a listening ear and baby sitting!! That will be a big help, though I am not good at taking help. Just knowing there is someone around is such a burden lifted. I thought we would be chained to Lilly forever. I know that sounds awful, but I didn't want to not be able to have a life.
*Many others have emailed me with stories of their own young children with diabetes. I will have such a strong network of like-situation people.
Thank you all so much again for your prayers and support. I never in my life imagined that starting a blog would open up this world to me. A world with some of the sweetest, most generous, loving people. I really do appreciate all of you.

*Edited to add:  I removed a few of the pictures.  I felt like they may have violated my daughter's privacy.

Friday, February 5, 2010

Lilly Update {part 2}

Hello friends it's Jenny checking in, I am on the phone with Elise right now and she is dictating this post:
Lilly has been moved from ICU to a regular room on the diabetic ward. She is doing much better, coloring is great, able to stay awake for longer periods of time and EAT, she is even able to make mom and dad "jump"... She's coming around indeed... Elise and Cory will be in classes all day tomorrow {Saturday and part of Sunday} learning how to care for Lilly at home and in everyday life. There is a chance Lilly might be able to come home Sunday evening.
Thank you for Lifting Lilly in your prayers...

Thursday, February 4, 2010

Grab a button...

Hey friends it's Jenny again....

Lilly is doing much better and even staying awake for longer periods of time... She has a long way to go... But God is definitely answering prayers... Cory and Elise are so thankful for all of the support...

Sweet MJ offered to make these WONDERFUL buttons for us to grab and use on our side bars... Please feel free to use them ... I couldn't decide {I loved them both} so you get two to choose from!

Thank You for your prayers~ Jenny

Lilly Update

Good Morning this is Jenny, with an update from Elise...
After being air-lifted to Scottish Rite Hospital Lilly was admitted into ICU with a blood sugar level of over 900. Cory and Elise were informed that Lilly's case of type 1 Diabetes is severe, through the night they were able to administer insulin intravenously, and as of 10:30 this morning Lilly's blood sugar is at 143. This is reason to praise, Lilly is regaining her coloring and Elise said her cheeks were getting their rosy glow back. Lilly will remain in ICU until all of her levels are stabilized, then be transferred to a regular room...
** Note from me, I would really like to be able to bless the family with special love, my mind is swirling with ideas, would anyone be interested in making a care package for them. I am thinking of small handmade items, children's diabetic books, and cookbooks, etc. we can send their way. If you have any ideas or would like to help email me at jennygilley (at) hotmail (dot) com
You can also reach me at my blog. I will posting ideas and details as they come to me.

Wednesday, February 3, 2010

Please pray for Lilly

My little girl just got taken by ambulance to the ER. She has lost a lot of weight lately and just Monday was throwing up a lot. Took her to the doctor Tuesday and they didn't address the weight loss{she weighs 30 pounds-so does Fisher, who isn't yet 2}, drinking and peeing a lot, just made her an appointment for this Friday for her 5 year well check as well as possibly running tests. She hasn't eaten since Monday and has gotten very lethargic and not super responsive in the past couple hours. Then she was leaning up against the wall to walk to the bathroom. The paramedics came and got her and Cory is riding with her to the hospital. I spoke with him a few minutes ago and so far her blood sugar is really high, diabetic high. This is somewhat what we were thinking since she's lost so much weight, and yet drinking tons of water and pottying a lot.
If y'all would just pray for Lilly, the doctors seeing her, and us we would appreciate it.

***Spoke with Cory, he said the paramedics pricked Lilly's finger and used a little test meter thing and her blood sugar was over 400. Also they got her oxygen levels up to 99%. They were in the mid nineties. I'll keep y'all posted.
***Update...Lilly's blood sugar is over 500. I am sure she will have/has type 1 diabetes. Read this article. Exactly like Lilly's symptoms. If her stupid pediatrician had tested her the other day when I brought it up, we would not be here right this very moment. A day earlier, but a day earlier would have been better.
***As of 9:40, Lilly is still lethargic, they are going to be giving her insulin and air-lifting her to Scottish Rite, a children's hospital.
***Just spoke with Cory, Lilly is at Scottish Rite in ICU. She will probably be there for 3 days to a week and a half. On the way, in the plane, her blood sugar spiked to as high as 700 or more{the chopper's meter topped out at 700}. The insulin should stabilize Lilly and she will be on insulin and given an iv{which she wasn't happy about}. So long as Lilly doesn't try to pull the iv out and doesn't freak out, she will be able to stay awake, otherwise, she may be given sedatives and a tube down her throat. I am praying that doesn't happen.
***It is now 11:33 and I just got off the phone with Cory. He said that the doctor said Lilly is going to be okay. The doctor says that she has Type 1 diabetes{which my Mom is NOT accepting, that Lilly was healed at the cross 2000 years ago} and we have a lot of learning and dealing. Lilly will be in the ICU for at least one more day and in the hospital up to 3 or so days. She will have to have insulin shots five times a day for a long time. A diet overhaul is coming. Lots of changes. Apparently, Lilly is one of the younger children to have Type 1, as it is more commonly found around puberty.

Doll Makin' Tea Party!!

This past Saturday we celebrated Lilly's fifth birthday with her closest friends. We had decided on a theme once I saw Crystal's post that y'all may remember me posting about here. This was a fun one!! Oh, if you want to make your own dolls, you can find the tutorial here.

Here are the dolls the girls made. I tried to make the dolls look like the girl who was making them. I thought they turned out so cute and the girls had fun with them, too!!

Here is Lilly{in the purple shirt} with her friends.

"I'm not listening." :)
These photos are not in party order, of course.

Makin' wishes, blowing out candles...

This was while the girls were eating.

Not the best picture, but this is the banner I made from old hankies. I was pleased with how it came out. We will hang it above Lilly's bed once it comes down.

The table all decorated{simply-let go of a lot of plans and ideas}. I ran out of time, otherwise, I would have written birthday wishes to Lilly on the chalkboard.

For the drinks, we had pink lemonade and hot tea. I decided not to use disposable dishes for this party.

Here is the food all ready to be eaten. We had pink cloud, cheese, fruit, pbj pockets, and chicken salad on croissants. Fun, girly, tea party food!!

The fruit was served up in my cute sherbet glasses.

Chicken salad and pbj pockets. Oh, and the wonders of photoshop and friends named Jenny. But we'll go there another day!! ;)
I loved this party and I know Lilly and her friends had fun!!
Oh, one honorable mention...I could NOT have pulled this off with out the help of my WONDERFUL, AWESOME neighbor, Brittny. She sensed the panic in my voice when I called to borrow a glue gun{because I couldn't find mine-story of my life...} and came over to help. So thank you, Brittny sooo much!! Amy, Amy, and Michelle deserve some props, too. I have wonderful friends!!

Tuesday, February 2, 2010

Jackson's First Day of Public School

After some prayer and lots of tears{on my end}, we decided to enroll Jackson in the local public school. Jackson has a sweet teacher and already has a "best friend" with whom he chased girls on the playground with. Oh dear...
His first day also coincided with Lilly's fifth birthday{yesterday}. She was sick all day and he came home with pink eye. Anyway, we celebrated Lilly's birthday this weekend with her friends and I'll share all those fun details later.