Update on Luke

As most of you know, we went to Temple again on Friday to meet with the pediatric endocrinologist to discuss the results from Luke's IV Glucose Tolerance Test he had last week. From what the new nurse told us last week on the phone, we knew that his numbers were worse than last year and his body was not doing as well as it did then. Of course, this was something we did not want to hear for Luke.

Well, Jeff and I went prepared with many questions and wanted to hear the doctor's explanation of the test results. After the doctor explained what the test was suppose to show, he then told us that Luke's results were not any better or not any worse than what they were a year ago when we last did the test. WHAT???? That was not what the nurse had told us at all! Basically, what the doctor was telling us was one of the scenarios that Jeff and I were praying for other than he never becoming a diabetic. Luke's body was still hovering in the normal range thus allowing him to not need insulin right now. The doctor still emphasized that in his opinion, Luke will still become a diabetic at some point, but we just do not know when. It could be anytime, anywhere from a few months from now to 20 -30 years. The doctor is hoping that Luke's body can hold off long enough until there is a cure!

All of this was great to hear! We were a little frustrated that the nurse would have given us her explanation of the test results when they were obviously not exactly accurate. We understand that she is new, but it would have been better for her just to say that she really just did not know what the numbers meant and that it would be best to wait and hear what the doctor had to say about it. It was just so emotionally draining what she had put us through. But in the end, that really does not matter! We were just so happy to hear the real test results and to know Luke is still doing fine.

Yes, unfortunately, Luke will develop diabetes at some point according to the doctors, BUT his body is still functioning as well as it was a year ago when we last did the test. Really that is all we could ask for right now! This is great news to Jeff and I. We are so thankful to God that he is still allowing Luke's body to function so well without the need of insulin. We are trying to be strong and remain hopeful that Luke can go many, many years without insulin. We know that the doctor thinks that Luke will eventually need insulin at some point in the future , but GOD is the only one who knows the outcome of all of this and our faith and hope rests in Him. God is good and will see us through what ever the future holds!

Thank you to all of you that have been praying for us! We could not have gotten through this without your many prayers and sweet thoughts.

A Visit From the Tooth Fairy!!!

A few days ago, Luke announced he had a loose toof (that is how he says it). We really did not believe him because he has said this before, but they were never the least bit loose. But this time it was. I could not believe it! I know from past experience what a HUGE deal loosing a tooth can be to a five or six year old. I can remember when Emily was in kindergarten her world was just about to come to an end because EVERYONE BUT HER had lost a tooth. But ofcourse, she did finally lose one and five teeth later she is still loosing them! So, I guess since Luke had to watch Emily loose so many teeth, he too thought his time would never come to loose a tooth. However, I am glad to say on Wednesday after ALOT of wiggling on Luke's behalf, he has lost his first tooth!

Even though he does not look like it, he was really excited to loose his tooth!

Here he is all tucked into bed waiting for the tooth fairy to come. His tooth is in the little red treasure chest!

The Story of a Little Boy and His Pumpkin

Yep, you read it correctly, this post is about a pumpkin! I know that it is July, but for the last few months our house has had a lot of excitement centered around a pumpkin. I guess it all started one day late in the Spring when Jeff and Luke went to Lowe's to get some things for our garden. Not only did they get somethings for our garden, but Luke ran in the house to show me his $0.99 pumpkin seed they just bought. The growing plan as described on the cup was to plant it in this little bathroom size cup and keep it in the house until it starts growing and then move it outside and plant it in our garden. I thought this all sounded great in theory, but did I actually ever think it would grow a pumpkin, absolutely not.

Well, after a few weeks of Luke watering it, talking to it and watching it on his bed side table, it FINALLY started to grow in the cup. So, Luke and Jeff transferred it to our little garden. Again, I thought for sure this would kill the pumpkin. Because seriously this 99 cent pumpkin seed would never make it from the cup to the garden and eventually turn into a pumpkin, would it?

I don't think that a day passed over the next few months that Luke did not care for his pumpkin plant. And then, one day Luke came running back into the house and was jumping up and down screaming he could see a green pumpkin on his vine. We all ran out to see it and sure enough, there was a little green pumpkin on the vine that was about the size of a golf ball. None of us could believe it!

Over many days and weeks, the little green pumpkin grew and grew and eventually started to turn orange. Yep, Luke had done it! He had grown a PUMPKIN!!!! In the end, Jeff talked Luke into cutting it from the vine because it was starting to get soft on one side. So, they cut it and Luke enjoyed having the pumpkin back inside the house with him for a few days. He would even sleep with it on his pillow, too sweet!

Finally, over the weekend, Jeff thought it was time to carve our pumpkin because it was starting to turn bad. So, we spent our July Saturday night carving a pumpkin. I did not know how Luke would take it seeing his pumpkin being cut open, but he did ok.

Needless to say, this little 99 cent pumpkin has brought a lot of FUN to our family. Hope you enjoy the video!

Not Good News!

The nurse called late yesterday and told us that Luke's test results were back and the numbers from the test were worse than last year. Basically, to simplify the meaning of the test, they were looking at how his pancreas responded to large amounts of glucose and sadly, his pancreas did not do well. Which means he will become a diabetic. That was not what we were wanting or praying for.

She started referring to him as a diabetic and not as pre diabetic anymore and that really upset me. HE IS NOT A DIABETIC UNTIL HE IS ENDURING ALL THAT EMILY DOES!!!!! It is hard to be hopeful at this point that he is not going to be a diabetic, but I know that God can change any of this. I am very bitter, angry, and sad. It really irritates me when people have told me over the course of the last two days that you all are going to be fine. That it is going to be easier this time around because you will already know what you are doing because you have already done it before with Emily. Yes, we will be fine, but NO, it does not make it easier. Why would it be? Yes, we will take care of Luke and do everything we have done with Emily for him. But it is because we have done it before with Emily, that makes it so much harder knowing everything that Luke is going to have to face. Plus, Luke has seen all what Emily does and know how bad it can be.

Why should both of our children have to have this horrid, life changing disease? We try to not let it manipulate our lives, but diabetes controls everything. There is not a minute, day or night, that you can let your guard down. There has been some peace knowing that for right now that Luke is ok, but hard to hear that time is passing quickly. They have told us to expect that Luke will probably develop diabetes just like when Emily did. Which means he WILL be a diabetic within the next year, after he turns six. It just breaks my heart.

The nurse told us that the doctor wants to meet with us to talk about Luke and the test results. So, we will go back to Temple once again next Friday to meet with him. I got really upset when she said he wanted to meet with us because I immediately thought that he was going to start Luke on inuslin. But the nurse said he did not mention anything like that. But if I remember correctly, they have told us that they could start him on insulin before his pancreas completely quits. I just hope they will not recommend that just yet. Please let him get a little older. He is just about to start kindergarten and is so excited about that. I just don't want that excitement to be spoiled and taken away because of diabetes.

We did tell Luke about the results. Poor little one! He noticed how upset I was and asked what was wrong with my eyes. We decided we were going to be honest with him. I told him we got the results back from the test we did the other day and that his body is going to be like Emily's one day and that we will eventually have to do with him what we do with Emily. He immediately started crying so hard. When Jeff got home he picked Luke up and gave him a big hug. Luke looked at Jeff and said, " I am scared Daddy". It just broke my heart! We assured him that God would take could care of him and he is not alone in this. We will be with him and that God is always with him and that HE has some plan as to why he has choosen you to have this disease. We are praying that the day Luke will need insulin will be many years from now. Please, God, let him be a little older. Please, God, please find a cure for diabetes!

Luke's IV Glucose Tolerance Test

Well, I know that it has seemed like I have been posting alot about diabetes, but it seems right now that is what our world is consisting of. Anyway, today we went back to Temple to do a IV Glucose Tolerance Test on Luke. As most of you know, we were told two weeks after Emily was diagnosed with diabetes that Luke, too, had 2 out of the 4 antibodies for diabetes.

At that point which was a year ago, our current dr. wanted to perform an IV Glucose Tolerance Test on Luke to see how well his pancreas could tolerate LARGE amounts of glucose. Luke hated the test and it was extremely painful for him. They had to put an IV in each arm of his little body. They used one set IV's to push high levels of glucose into, while drawing out blood from the other set of IV's. He was only 4 at the time and hated every minute of it. It took Jeff laying on top of him to hold him down, while two nurses pushed the glucose and drew his blood, while I held his hands down. Needless to say, it was the worst thing he had every gone through and a very traumatic experience for him. Unfortunately, at that time, his pancreas did not respond as well as we had hoped. His little pancreas did not handle the large amounts of glucose well. It was explained to us that just meant that the onset of his diabetes would probably be sooner than later according to this doctor. He recommended we repeat the test again in about a year to see how his pancreas would respond. That doctor has thankfully moved on and our new dr left it up to Jeff and I as to whether or not we wanted to repeat the test again. After much thinking and planning, we decided to do it only if they would agree to put Luke asleep to do the test. We were not going to allow him to have to go through something like that if we was going to be awake. He has not forgotten about it and may not ever. Plus, Jeff and I did not want him to be so anxious about dr's, needles and shots. Especially, if for some unGodly reason he is to develop diabetes soon because his little world would be dealing with all of these things alot.

Well, the drs agreed that we could put him to sleep to do the procedure, but we would have to do it in the PICU in Temple because they did not have the capabilites to put him to sleep in just the drs office. It sounded extreme, but we did not care as long as he did not know what was going on during the procedure.

So, we left this morning at 6:45 to be in Temple by 8:45 for his appointment. The dr in charge of the PICU met us outside of the PICU unit and was perplexed as to why we were wanting to put him to sleep for this kind of procedure. We attempted to explain our last experience and told him we did not want him to go through that again. Plus, we emphasized that we were told that was why we were at the PICU in order to have the option of putting him to sleep. If we were just going to attempt all of this again without some sort of sedation, we could have just done all of this at the drs office. I don't think he was real pleased to be messing with us, but we had to do what would be best for our son. After discussing our range of options from doing nothing to giving him oral sedation of vercet (Sp?) to a shot that would completely knock him out, we deceided on the oral sedation of vercet. It was not going to really make him completely asleep, but it would just make him feel very relaxed and really not care what they were doing to him. So, the dr led us to a treatment room luckily not inside the PICU. I was nervous about seeing all of those very sick kids dealing with alot worse than what we were. :(

They hooked Luke up to all of the machines and the dr gave the medicine to Luke and told us he should start feeling it in about 15 - 20 minutes. Well, Luke never really fell asleep, but he was DEFINTILY relaxed. He was very silly acting and very talkative to the nurses. He was very intrigued by the little red light that was on the tip of his finger that measured his pulse. I think that was the medicine kicking in! :)

It takes two nurses to do the test and to start all of the IV's. They first tried starting the IV in his hand, but were unsuccessful and had to do them in his arms. Luke was definitely aware and even cried a little, but it was nothing like before. So, that was an answered prayer and a blessing. After the IV's were in place, they began the tests of pushing the glucose and drawing the blood. Again, Luke was very aware of what was going on, but just very relaxed through it all. He actually kept the nurses and Jeff and I laughing with all of the silly things we was saying. Here is a picture of him with all of the IV's in his arm. :(

And a picture of one of the nurses drawing the blood.

It makes me sad to look at it and think about what his little body had to go through. He is just too little to have to endure something like that. But all in all, it was a successful day and Luke did great! Praise God!

Anyway, we do not have any test results back yet. I think that we should get the first set back at the end of this week and the rest of them a few weeks later. So, please pray that it has not progressed any further or EVEN MAYBE HAS IMPROVED, which is a possibility! I know GOD CAN DO ANYTHING!

Emily's Insulin Pump

Well, we survived the first part of Emily's training for her insulin pump. We went on Tuesday to meet with the pediatric endocrinologist nurse and the Medtronic pumps rep. This was the nurses first training on the pump because she was new to this department, so that is why the pump rep was there. The nurse really had studied all of the information and did a great job presenting it all to us, probably even better than the pump rep.

It was a three hour meeting filled with ups and downs and TONS of information. For the first 2 1'2 hours we reviewed all of the features offered on the pump. Extremely overhwelming! For the past week or so, the pump has been set in a practice mode so you can play with all of the features and play like you are giving insulin without it actually doing it. I asked alot of questions and it frustrated me because the rep really did not want to deviate from what she wanted to talk about. That is just not really that good for me. If I have questions, I am going to ask them. Especially when the questions and answers are related to my daughter living a healthy, SAFE life.

The bad part of the visit was when the nurse and rep realized it was 4:30 and it was soon quitting time. We had not even started talking about how to connect the pump to Emily or fill the pump with insulin. That was the main reason we were there and they only wanted to devote about 30 minutes to it. That was when I got really frustrated. Plus, the device we needed to use to insert the needle and tubing into Emily was not working the way it was suppose to. And the rep just kept telling me it is fine and just keep going. I am not ok with that. Finally, we switched out the device and it worked the way it was suppose to. At this point, I was so confused. There are about 15 steps to put the needle and tubing into Emily and because it was not working the way it was suppose to, I was not sure how we were going to do this when we were at home by ourselves. Then they showed us how to fill the insulin reservoir. Again, something the rep just flew through that required about 10 steps and did not really want to devote to much time on it. Thank goodness Jeff was there. Because I knew once we got home, between the two of us, hopefully we could do it.

Then the time came to actually connect it to Emily. She is allowed to wear the pump in any of the places she would normally get a shot - either her tummy, her arms, her bottom or her legs. She hates getting shots , but prefers them in her arms. So, that is where we decided to do it. She was so brave and did not even cry. I think that it hurts more than a shot, but since we only have to do it every three days it will be better than the 7 shots she gets each day.

So, now she has her insulin pump. For the first week, we are only using saline solution as we practice using the pump. This is the safest thing so that as we are learning, if we do make a mistake it is really not that big of a deal because she is only getting saline. Next week when we go back to Temple we will start using insulin. That makes me a lot more nervous. Because with the wrong push of just a few buttons, we could give her too much insulin and make Emily very sick.

We have to replace the tubing and needle every three days. So, Jeff and I had to replace it for the first time today. It was confusing and did not go as smoothly as we wanted, but hopefully it will get easier over time.

She has to wear the pump all day, every day. We just have to disconnect the tubing from the site while she baths or is swimming. I think that she is excited. She either keeps it in her pocket or we have a clip that we can use to clip it to her pants. She even has to sleep in it. I was really nervous the first night she slept in it because I wanted her to be comfortable while she was sleeping. As she and I were talking about the best place to clip it to her pajama pants , I just kept asking and asking was it ok and was it comfortable. She finally just looked at me and said, "Mommy it is just a clip. I will be fine". So sweet! I just had to smile. Yes, it is new and scary, but it helps that my sweet little girl has the kind of attitude that she does. Such a blessing from God to help her to have peace about all of this.

Emily and her PINK pump. When we saw that there was a pink pump, we knew that was the one for her!

The tubing that comes out from the end of the pump, we thread under her shirt, and out of the sleeve of her shirt to the needle that is inserted into her arm.

A BIG Change....

Tomorrow is a HUGE day for our family. We will be going to Temple to take part in the three step process for our daughter to get her first insulin pump. We all have alot of emotions going into this new phase of our lives. We are all excited, scared, anxious, nervous and the list could go on and on. We will go tomorrow and have them teach us how to put the pump into Emily. Jeff and I have spent the last week reading , watching DVD's, listening to CD's and rereading everything we have to do in order for this to be successful. We will start the pump with only saline solution while we learn the process of operating the pump and attaching the pump to Emily. Then we will go back next Tuesday and the following Tuesday to have them start the insulin part of the pump.

It has taken us about a year to all be on board for getting the pump. In the beginning, when the doctor's mentioned about getting Emily started on the pump, it was almost not possible because of the horrible health insurance we had at that time. Basically, we were going to have to pay in full for the pump (about $6000) and then about $450- 500 a month for the supplies to operate the pump. Our insurance just did not have good coverage for someone with diabetes. However, we are very fortunate that Jeff is one of the partners and owners of his engineering firm that we had the opportunity to choose a different insurance plan (one with better diabetes coverage) when it came time to renew it. After his company started looking, they found a new plan. It was almost to good to be true. But basically after we pay a $600 deductible, everything for Emily would be covered 100% including her pump and supplies. WOW! What a blessing from God. He saw our needs and met them beyond our wildest dreams. But regardless of money or an insurance change, we would have still gotten the pump for Emily a year ago if she was ready for it, but she just was not. We always told her we would never force her into it. Emily biggest concern was that she did not want to have something hanging off of her body for the rest of her life. I wish that I could tell her that would not be the case, but in all reality, that is what it is. We explained it that if we told her three years ago you would have to have 7 shots a day to stay healthy you would not want that either. But that is what we now have to do. It is just like what the pump. It will help manage your diabetes now and in the future. Plus, with the pump, she will only have to have one shot EVERY THREE days to insert the site for the pump instead of 6-7 shots EVERY DAY that she now receives. We will have to still check her blood sugar for the time being, but the shots have always been the hardest thing for Emily, as they should be. Once we get use to the pump, we will then be able to start using a Continuous Glucose Monitor (another sensor that will be given like a shot) that will monitor her blood sugar every 5 minutes and display her blood glucose level on the insulin pump monitor. It will reduce the number of times we have to do a finger stick to check her blood sugars from about 12 a day to about 3. Again, something very exciting to look forward to for Emily.

There are so many NEW things that we will have to do with the pump in this diabetes world we now live in. Please keep us, especially Emily, in your prayers over the next few weeks. This is something we know that will better control her diabetes. But let's face it, is a scary thing and there is ALOT of things that could go wrong with it. Yes, it will be hard for Jeff and I as we learn everything in great detail about the pump, but it will be the hardest for Emily. I will try to post about our experience tomorrow with some pictures for you all to see what we will be doing with her and her new pump. Please pray for a successful and smooth transition for us as we start Emily's new insulin pump.