Pump and Monitoring System Process Begins!!!

On Friday, February 3, 2011 we met with a rep from Medtronic at our Endo's office and decided to start the paper work for the pump, cgm, and mysentry!!!

Nevaeh has been praying for a pump since diagnosis and to see her reaction, questions, and comments Friday at the meeting was so GREAT!!! She is extremely excited!

Here is a picture of the pump she will be getting!

This will give her so much more freedom and make managing her diabetes much easier! She will get a poke one time every three days to insert the pump instead of 15 times every three days! We will be able to easily enter her carbs and insulin will be given with ease! We will be able to know her blood sugar because her pump will be wireless with her meter as well as her CGM (continuous glucose meter)

Here is a picture of the CGM!









This small little device will continually send Nevaeh's blood sugars directly to her pump! It also allows us to know if Nevaeh is going low or high by making the pump alarm go off and alert us! We can even see arrows beside each blood sugar letting us know if her blood sugar is rising, falling, or steady! This tool will give us a larger view of what is going on with Nevaeh on a daily basis and could help us catch dangerous highs and lows!!!

The last component is the mysentry shown below!














Click Here to Watch Video Showing How it Works!


This AMAZING device will allow us to view all the details of Nevaeh's pump at all times! Most importantly it will be on my night stand so at night I can see her blood sugars all through the night and it will alarm if she is going low or high! Although, this product is brand new I've already read posts from parents who have it and how it alerted them of a low hours before they were to wake up and take the next blood sugar! With talk of "dead in the bed" syndrome I will do anything I possibly can to make sure Nevaeh is safe through the night and nap!

So to me these products are priceless as a mother but they come with a steep price of $3885 (after insurance)!!! So we are trusting God as we start the process that He will provide the funds for Nevaeh to have these products. We have had several people ask if they could help make this possible for Nevaeh so we decided to create a safe and secure way for people to help!
The link below is to a fundraiser to help provide the funds for Nevaeh to get these (to me life saving) devices! If you want to help the link below is linked to PayPal and is a safe and secure way to help!

Raise Money for Pump for Nevaeh - Medical Expense Fundraiser | YouCaring




Thank you for your support and love!!!

Our First Sickness since being Diagnosed!!!

In January, Nevaeh had her first sickness since being diagnosed. We knew that she could go high with sickness but from what we had read and been told we heard mostly about stomach sickness so didn't expect it to be that bad with a cold. A few days later Nevaeh woke up with a barking cough and was not able to breath well. We went to the doctor that next day Nevaeh of course to hear that she had the croup. Our doctor prescribed steroids and told us to follow our same procedures for diabetes.........so we thought we were ok and not to worry. The next day Nevaeh woke up with a very high blood sugar and then the frequent urination began so I immediately checked her ketones and there were large amounts in her urine!!! When I called our Endo they were shocked that the doctor did not advice us to call them right away because she said that we should have doubled her insulin from the time we started steroids until the last dose! The next 3-4 days we pushed fluids and insulin through Nevaeh like it was nothing to get her numbers down! I have to say it goes on the list of scary moments since diagnosis! I now will call the Endo anytime she is sick until I am use to the process! If we did not get her ketones and bs down we could have ended up in the hospital with DKA just because of a illness that would be normal for any other child! We are told to treat her like a normal child but I feel more protective in many ways and keeping her well and away from sickness is one of them! I'm trying to avoid the inevitable but I know it will come eventually, the dreaded stomach bug/virus, and I am SCARED!

BitterSweet

This past week on Monday, January 30, 2012 we went to a normally scheduled Endo doctor visit. While we were there we found out lots of news some Great news and some news that just left us concerned....

First, we found out Nevaeh's A1C (diabetes number) was 8.3!!! When she was diagnosed she was off the chart and the highest number on the chart is 14. We were very proud to say t he least!!!

Then, the doctor asked us the unexpected question....."Are we ready to start pumping?"!!! This made us even more happy because it means a better handle on Nevaeh's diabetes and less pokes for Nevaeh!!!

Also, while we were going through our list of questions for the doctor we got to the question about Nevaeh's stomach hurting almost everyday. The doctor told us that when she had her first blood work done her cholesterol and triglycerides were high and that he wanted to have more blood work done to try to see what was going on and that he wanted to rule out pancreatitis. So we left in a bittersweet mood because we were happy for the good news about her A1C and the pump but quite worried about what else might be going on with Nevaeh.

The doctor scheduled blood work to be done first thing the next morning. In my mind I hate seeing her go through more blood work but I know it's for the best. Now all we can do is sit and wait for the results......

I will post an update once we get the news!

God's Amazing Presence

January 31, 2012

It's amazing what something as little as a song can allow you to experience an UNBELIEVABLE time with God!

As I began to sing:

"I need you to soften my heart to break me apart
I need you to open my eyes to see that you're shaping my life
All I am
I surrender
Give me faith to trust what you say
that you're good and your love is great
I'm broken inside, I give you my life"
(want to here the song? Go HERE)

I went from singing to a personal conversation with God thanking Him for all the blessings He has given us and thanking Him for bringing us out of so many hard situations in the past and for watching over Nevaeh and keeping her safe! As I sobbed and continued to thank Him and eventually ended up on my knees begging Him to please continue to watch over Nevaeh and to let me keep her right now! I continued to sob but not out of sadness but out of thankfulness and an overwhelming feeling of God's presence.

I have recently felt so alone, and that no one understands but I am telling you about this so that others who are going through a hard time can know that God is there and wants to be there and it doesn't take much to let Him in just knowing that you cant do it alone and trusting that He can is all it takes! He loves you and wants you to feel His comfort!

The Feelings of a Mom of a Type 1 Diabetic Child...

Over the past three months I have had a lot of emotions and feelings here are a few......

1. Overwhelmed......with the information, with the thoughts, with the daily process, with the huge responsibility of making sure my sweet girl is well and alive! The resposibility of knowing what to do at a moment's notice with a low or a high that can affect my daughter's well being!

2. Scared........of lows that can lead to seizures, loss of conciousness, or even death in type 1 diabetic children! Of highs that can cause damage to my sweet girls organs or lead to DKA and end us up back in the hospital. Of sleeping because she could go low during the night! I currently wake up every 2-3 hours to check her blood sugar throughout the night!

3. Tired.......of this new lifestyle, of the stress, of seeing my little girl get stuck over and over, to watch her cry out to God for answers during prayers at night, not knowing what's next, and of staying up most of the night checking blood sugars not being able to fall back to sleep bc of the thoughts that go through my head!

3. Worried......about the future for my sweet girl, about her getting sick bc once she's sick her blood sugars are everywhere! Of the unknown, Nevaeh can be 115 at one minute and be 40 or 404 the next!

4. Alone.......when Justin is at work for long hours I feel so alone! Especially, since I don't have a close friend that has experience with type 1 diabetes in their child. Don't get me wrong I have awesome family and friends but still long to have some one who can relate, let our children meet so they don't feel alone, and someone to vent with!

5. Sad......because of these feelings I have several days a week that are filled with tears!

6. Mad....that my 4 year old, beautiful, sweet, smart little girl has to deal have this chronic disease the rest of her life!

7. Blessed......that most of all I still have my sweet girl with me and that she is getting the treatment she needs now!

Hypothyroidism

Shortly after Nevaeh was diagnosed with Type 1 Diabetes she had to have more blood drawn to check for autoimmune diseases such as celiac and hypothyroidism. Within a week's time of the blood work being drawn we got a call from the Endo office letting us know Nevaeh also has hypothyroidism, an autoimmune disease that goes hand in hand with type 1 diabetes (we were told by the doctors). Hypothyroidism is a condition when the thyroid does not produce enough thyroid hormone. This can cause slow growth, high cholesterol and many other problems! Some symptoms of hypothyroidism include:

• Feeling tired, weak, or depressed.
• Dry skin and brittle nails.
• Not being able to stand the cold.
• Constipation.
• Memory problems or having trouble thinking clearly.

Nevaeh was then put on a daily pill to help regulate her thyroid hormone level and she will be on the pill for the rest of her life. The blood work checked for other conditions and autoimmune diseases that luckily Nevaeh was cleared from! We were told that others can develop over time but we are happy to be cleared for now!

Just a week before when we think our life can't get any crazier it does......

Yep, we were all in a wreck that totaled our car! The amazing thing is we all walked away with just a few aches and bruises! God protected our baby girl again from something that could have been a lot worse!

Our Story of Diagnosis : Type 1 Diabetes

I will never forget Sunday, October 23, 2011 the day my sweet girl was diagnosed with Type 1 Diabetes. The following is a quick version of the 3 days that changed our life forever!

It started off like a normal Sunday morning Nevaeh felt good when she woke up and we were going to get ready and head to church. We had breakfast (a high in sugar breakfast) and soon after Nevaeh was feeling sick at her tummy. I thought she just was having another tummy ache like we had seen over the last few weeks and even visited the doctor about but was told it was just constipation. So after about 30 minutes of letting her sit down and relax and watch some cartoons she was feeling better! So much better that she wanted to run by CVS dressed in her Halloween costume before we went to church because they were giving out treat bags to all kids who came dressed up that morning! Since she seemed to be recovered and was so excited I decided to go ahead and take her. When we got back home to slip on her different clothes and head to church she asked if she could have a piece of candy from her bag of treats. I decided to let her have one piece and by the time we drove to church (a 5 minute drive) Nevaeh was again feeling bad (hint: I had just allowed her to have more sugar) and I at the time had no idea why! I decided to let her go in big church with me because she didn't want to go in her class and play, even though her best friend was there who she had not seen in a few weeks (another big sign to me that she was feeling really bad)! On our way over I was talking to one of my best friends(her best friend's mother)and she said that she didn't want to scare me but she recognized some of the symptoms that Nevaeh was having as signs of diabetes (extreme thirst, frequent urination, breathing heavy, pale, weight loss, and drowsiness)!!! I immediately felt as a mom that she was right and this was not good. Justin and I both began to feel quite emotional because we had not put all of these things together until hearing this from our friend! Before we finished singing the first song in church my sweet girl was already asleep on my shoulder and slept through the entire service!!! Looking back it was literally like she was in a sugar coma (I had no idea about hypo or hyperglycemia at the time)!!! When we got home that day Nevaeh was lethargic and slept most of the day as I looked for more confirmation on medical websites of Nevaeh's symptoms. Around 6pm we called her pediatric doctor because we were so concerned and were quickly advised that with the symptoms she was experiencing that we needed to go on to the local children's hospital. My husband immediately came home from work and we went straight on. By this time my baby girl looked so pale and weak and was breathing extremely heavy. When we got to talk to the ER nurse in the children's hospital she told us that before we even told her Nevaeh's symptoms she could already tell what was wrong! After that it was a whirlwind of testing and emotions! Justin and I, although we had expected this earlier that day, were in extreme shock to find out Nevaeh did in fact have type 1 diabetes! Nevaeh had so many pokes(IV's, finger pricks, and blood drawn) in 4-5 hours time that I saw my little girl go from extremely afraid of needles to not crying at all and watching them insert the needles and search for veins with out flinching. As a mom I would not wish this or any part of type 1 diabetes on anyone! I cried inside as I watched my baby girl be poked and prodded wishing I could take her place and having no idea what to expect next! As I listened to each new doctor I met I felt like I couldn't concentrate as hard as I was trying it was too much to consume! She had to be transferred to the ICU for the night mainly because of the low CO levels in her blood because of her labored breathing. Of course, when I hear ICU as a mom inside I freaked out! Again as parents a wave of emotions rushed over us! During the course of the night we met more doctors, had many more pokes, were educated on DKA which was why we landed our selves in the hospital(diabetic ketoacidosis), and got very little rest. The next morning when the doctor finally got to our room we were told something that no parent ever wants to hear. The doctor told us that the 2nd day is when Nevaeh would be under even a closer watch because if her brain were to swell (cerebral edema), due to the intense treatment of fluids and insulin to get her back where her body needed to be, it would happen during the second day and if it did there was not much they could do! Even though the doctor said that this was very rare I was devastated and at that point I don't know if reality hit or I just couldn't handle any more so I had to leave the room and have a break down! I was so thankful to have family and our closest friends there to console me as I cried! Once I got myself together I went back to see my little girl who was starting to feel better because of the fluids but was really hungry because she had not had anything to eat since lunch on Sunday and it was around 10:30am on Monday! We then began to play card games with friends and family as they came in to visit one and at time to take Nevaeh's mind off her hunger. We were all extremely excited when we found out she could eat lunch at around 1pm and if she finished at least half of her lunch she would be transferred to a regular room in the children's hospital for the 2nd night stay! She got her lunch and ate well over half of it! After lunch we met with a diabetes educator who was AMAZING! She has diabetes type 1 as well so it was comforting to hear from her for both us as parents and to Nevaeh. She came bearing much info about type 1 diabetes as well as gifts for Nevaeh and tools for us to use! Nevaeh received Rufus, the diabetes bear and a book about him and one of the most important tools we received was our first glucose meter. We learned so much in that 2 hour time span and were so thankful for it! Later that afternoon we were told we could move to our new room! Once we reached our next destination we continued to be educated at an extremely fast rate. By this time Nevaeh still looked weak but was walking around and sitting up acting more like her sweet little self! It was amazing to see how in that short time she could change and that she was clear from cerebral edema! Now that I look back I know God was there protecting her through every step of the way but at the time I was hurt, asking why, and to be honest extremely mad that this was happening to my baby! After visiting with friends and family that evening we tried to get some rest because we were told as long as things stayed on course we were headed to the Pediatric Endocrinology Office first thing in the morning. Since I was in the bed with Nevaeh I got very little sleep since her BS had to be checked every hour through the night. As I layed there sobbing beside her I poured out my frustration and anger to God! Nevaeh slept soundly through the night which was a blessing since she got rest and I got that time to let out my feelings (although the poor nurse had to think I was having a mental break down each time she came in)! The morning came and we were given our release papers, told where to go, and given Nevaeh's breakfast that she had to eat once we were at the Endo Office because we would now be giving the injections of insulin and the staff there would be there to support us and direct us the first time! We were thrown right into it without a choice! Not that we would have chosen differently but it was just so much at the time and I guess that's probably why they do things that way! Because diabetes doesn't just go away and I am still in emotional distress and overwhelmed on certain days even now! After meeting the doctor and the team we felt supported and confident that we could do this! We gave her the first injections and stayed for about two hours worth of training and were sent home! Were we ready....well yes we had everything we needed and were equipped with knowledge and a handbook but no emotional, physically, and mentally I don't think you are ever ready to go home with your child who has a chronic disease that three days earlier you had no knowledge about whatsoever! Our life is now changed until a cure is found!

Although, this is the most crucial part this is just a small part of our 3 month journey with type 1 diabetes! Hopefully, this will help others who have children who are recently diagnosed or parents who are questioning if their child has diabetes!

The Tell Tale Signs of Diabetes Type 1

As a parent recognizing the signs of Diabetes Type 1 for the first time can be scary and overwhelming! When we first started putting the symptoms together just in brief hours before heading to the ER we were overwhelmed (least to say) at how long some symptoms had been around and we didn't recognize them as signs of diabetes! Little things like drinking water a lot, in our minds was just because thats the only think she has ever really drank except milk and an occasional juice. The peeing a lot, in our mind was because she drank so much water! These are just some of the symptoms we looked back at and felt overwhelmed with guilt! We had even taken her to the doctor a month or so before diagnosis and the doctor didn't even bring up diabetes as an option! We have been reassured so many times at the hospital, by the Endo docs, and by friends and family that we should not feel bad about not putting the symptoms together but it still is tough as a parent looking back knowing that your child has been sick and you might could have caught it sooner!

I say all this because I know that there might be parents reading this wondering if their child has the signs/symptoms of diabetes and to those parents I want them to know these answers! Knowledge is valuable when it comes to so many medical conditions and especially when it comes to diabetes type 1. Below are some of the symptoms a child with diabetes type 1 could have. Please realize your child could have a few or all of these symptoms (I am not a medical professional and am just posting this as a diabetes mom's view) and if you believe your child could have diabetes type 1 I would urge you not to wait but to see your child's doctor ASAP!

Extreme thirst

Frequent urination

Sudden vision changes

Sugar in urine

Fruity, sweet, or wine-like odor on breath

Increased appetite

Sudden weight loss

Drowsiness, lethargy

Heavy, labored breathing

Stupor, unconsciousness

(http://www.jdrf.org/index.cfm?page_id=103498)