Posted in Diabetes

Tomorrow, Nov 7th, our family will be participating in the Walk to Cure Diabetes.  This is sponsored by the Juvenile Diabetes Research Foundation. 

Joshua has been looking forward to this walk for many months.  We started talking about it when he was in the hospital.  He is familiar with "walks" because we go to the local Buddy Walk (supporting Down syndrome) each year. 

Here is a note from Joshua.

I think the walk is going to be fun.  I hope that the JDRF gets more money so that they can find a cure for diabetes.  I hate diabetes.  I don't like getting shots and pokes.  I want to be able to have food whenever I want it.

I know that money is tight and that there are many worthy causes.  I do feel the need to share this one though as it is important to us and many other families as well.  If you are interested in sponsoring Joshua, please go to this link.

http://walk.jdrf.org/

You can type in his name Joshua Nelsen and state and his page should come up for you.  Our team name is "Joshua's Fan Club" which should also show on the site.

Blessings

Leslie

Posted in Diabetes

Just a short update on our clinic visit yesterday.  It was a good visit.  The staff there are very nice. 

I was eager to see his A1C number.  This number measures his blood sugar levels over the last 3 months.  For a non-diabetic person, normal is below 6.  When Joshua was admitted to the hospital at diagnosis, his level was 15.6.  That is so high it isn't on most of the charts.  At our first Diabetes clinic visit, it had dropped to 12.  Yesterday it was a 9!  Yippee!!!  They were pleased with this number and so am I.  Our goal now is to get below an 8. 

There was concern that he is still seeing some 300s for his blood sugars.  We may be changing some of his med dosages if this continues.  I don't want to see those either - but prefer that to the lows!  The dr did say that they didn't want to see lows either because going too low can cause "brain damage".  I really wish she hadn't said that in front of Joshua.  :-(  Hoping it went over his head - but not much does to be honest. 

We received information on getting a pump.  We need to attend a carb counting class and a workshop on the various pumps.  Both classes on only once per month and on the night of Joshua's football, so I'm not sure when we'll be going.  Not this month for sure given the dates.  I don't think he wants to get the pump until after football anyway.  We'll see. 

One other piece of information was a surprise for me.  The dr mentioned the celiac screen.  He had that done at the hospital and it came back negative.  I was very thankful for this!  What I didn't know is that this can change and isn't a permanent thing.  Bummer!  Apparently there are several autoimmune things that Joshua will continue to be checked for including celiac and thyroid.  (Diabetes is also autoimmune.)  I hate that there are so many other things that can be attached to diabetes.  I'm thankful that we aren't dealing with them now.  I'm thankful that we follow and serve a God who will carry us through whatever we will face. 

So, all in all, a good visit.  The dr gave me her email and phone so we could keep in contact about his numbers and changing his doses if needed.  I'm thankful that there is such a great team of drs that we see!  We won't be back until December.  Hopefully we'll see really good numbers then too!

I'll be doing some retroposting for some of the next posts - our start to school and some of what we've been up to.  Lots of pictures.  :-)

Thank you for your prayers for our family. 

Blessings
Leslie

Posted in Diabetes

I'm  proud of one of my little men today.  He wanted to try something new.  Face a fear and tackle it.  He asked if he could do it.  I agreed.  With trembling hands, he prepared.  He hesitated, wondering if he could go through with it.  He tried and nothing happened.  He looked at me quizzically and I told him to try again with more pressure this time.  And then, he did it.

Joshua tested himself for the first time today (and then again several more times today).  He was so proud of himself.  It was sweet to see that look of pride in his glowing eyes when he was able to do it.  I'm proud of him too.  I remember how scared I was the first time I had to poke him - and it wasn't even my finger. 

The only downside to his first testing.  He was low.  He hadn't felt it and it surprised us both.  Thankfully, he came up pretty well after a juice box and then a snack after another recheck. 

In other Joshua news, he was stung by a bee yesterday in the late afteroon.  We were going on a treasure hunt out in the yard when it happened.  He screamed from the pain as he was stung on the tip of his nose.  We went inside and I followed the steps in my home remedies book to treat him.  Thankfully, he had none of the bad symptoms.  He did however have pain and swelling

I was surprised when I saw him this morning to note that his nose was still swollen and red.  It looked more swollen, but I wasn't sure.  He still had no other danger signs, but still I wondered. 

I called the nurse at our ped's office to talk with her about it.  Is it different since he has diabetes?  The answer I didn't want to hear was "yes".  Since he has diabetes, he is more prone to infection.  So, while he did not have an allergic reaction to the sting, he does have to be watched to help prevent infection. 

Thankfully, he does not seem to be in pain.  His nose is still swollen and the sting site has a slight discharge at times.  I'm hoping that by morning it will look much better.  Praying for a quick healing with no complications.  I wish it had gotten me instead of him!

Otherwise, we are all healthy and staying busy.  More tomorrow.

Blessings
Leslie

Posted in Diabetes

for those who are wanting to know a little more.  I found the comments by the children at the end to be sad, but true. 

Facts on Type 1

I am thankful that in the midst of dealing with this disease that we do have a hope.  We know Who made us and for what purpose.  I am thankful that God can use this for good in our lives and I trust that He will.  I am thankful that our circumstances do not change the hope we have in HIm!

Hope you are having a great week -end!

Love
Leslie

Posted in Diabetes

Over the last couple of days we have started to see Joshua having some lower numbers (80s and 90s).  Not technically "low", but pretty close.  His goal is to be closer to 200.

This morning, we planned to start our first day of school.  The kids got new school things last night and we had planned to go out to eat this morning as per our family tradition.  We got up and were getting going with our day when Joshua says that his stomach hurts.  I take him upstairs and so he can lay down and rest.  The pain gets worse for him and within half an hour, he is sick.  Again.  :-(  He threw up several (3) times and then fell asleep for a couple of hours. 

He seemed to feel much better after sleeping.  He stayed up in the bedroom for the rest of the day though without complaining.  I know he did some good reading and a little bit of math. 

The rest of the kids started school and had a productive (albeit slow) day.  More on all of that later. 

Please pray for health for Joshua.  He told me his stomach hurt again at bedtime.  I hope we are going to see this as a trend.  Planning to email his doctor later tonight - and then hopefully head to bed soon.

Blessings
Leslie

Posted in Diabetes

We have gotten a lot of support in this new journey.  I'm thankful for that and know that it helps to know that others have walked this path and are here to answer questions, listen, sympathize and understand.

One of the supports we have is from the Juvenile Diabetes Research Foundation  We received information about them while we were in the hospital.  I had not yet initiated contact though when I received a call from our new case manager at our insurance company.  I'll admit, when I first heard it was someone from insurance, I was fearful of hearing that we were being denied services or coverage.  The gal I spoke with was nice - and knowledgable about diabetes!  It was very refreshing.  She talked with me about the things I needed to do - and then followed up with an email listing websites for various services.  Really nice!

She followed up our phone call the next week to ask if I'd talked with anyone from JDRF.  I hadn't.  Well, she called them and spoke with someone who then called me!  This gal from BCBS (insurance) is on the ball!  I spoke with another mom that helped to answer questions and talked with me about the mentor program.  They will match us up with another family with a boy similar in age to Joshua.  That will be nice.  I know he will enjoy meeting another boy that also has diabetes. 

I sent in a form to JDRF that we received in the hospital.  As a result of that, Joshua received a really nice surprise in the mail!  It is the JDRF Bag of Hope. 

A backpack filled with things.  The backpack even has a cooler compartment in the back that he could use to carry his meds (or a cheese stick which is what he likes putting in the cooler when we go out).  The backpack has the JDRF logo on it.

Here are some of the goodies inside.

*Rufus the bear - who is wearing a medic alert bracelet.  He has patches in the spots where you get pokes and shots.

*Story book about Rufus.  The story is about a boy diagnosed with diabetes and his mom makes this bear "with diabetes" so that he has a friend that understands. 

*Pink Panther First Book for Understanding Diabetes

*Cartoon book called CJ has diabetes.  One of the facts from this book is "every hour someone finds out they have diabetes". 

*DVD called "You Can't Catch Diabetes from a Friend"

*Coupon for a local science museum

*Carb counting book

*Glucometer

*OmniPod Demo Kit - a pump so Joshua can see what it is like. 

*LOTS of pamphlets and brochures on carb counting, wearing a pump, advocacy, research, hypoglycemia chart, JDRF magazine, diet and portion control and more!

This is incredibly nice.  I know it helps to have the information and even in reading the books to know that the emotions are all things others have felt too.  I have to say, that I cry reading these books still.  There are times when I just can't believe he has diabetes.  There are still times when it is hard for him.  I hang out with him most nights until he goes to sleep as night is typically the hardest time of day.

Today has been a challenge today because Joshua woke up feeling badly - and soon got sick.  Again.  He ended up being sick in the morning and then slept most of the afternoon (and also had a short nap in the morning too!).  After lots of sleep, he felt much better.  Was able to eat dinner.  Then after dinner, Christopher got sick.  *sigh*  Surely this will all be gone soon.  I'm really hoping it doesn't make the complete rounds.  Praying for wellness and for it to be short-lived sickness.

Sorry my posting is so sporadic these days.  I'm trying to catch up on my records for Chrisopher's past year.  (Yes, behind)  Trying to plan for the upcoming year.  Working on getting things started with our FIAR support group.  Planning our field trips is the biggest item there.  Juggling therapies - we are up to 6 per week now.  Trying to implement a budget.  Working on chore charts.  Oh, and learning to count carbs, measure carefully all the ingredients in dishes and what is served and just in general diabetes care.  I know we all have full plates.  Some days mine seems to be running off the sides.  In it all though, life is good.  I'm richly blessed and thankful for much!

Blessings

Leslie

Posted in Diabetes

This is long overdue and I apologize.  Things have just been ... busy.  :-)  This is kind of factual, but just sharing more about our clinic visit on Tuesday.

We left early and got to the hospital in time to park, walk across the bridge and check in.  They are very punctual (which is really nice!) and we were called as we were checking in.  Everyone we met was very nice and helpful!  Great staff!

First a check of the basics - height, weight, temp, etc.  Then to the room.  We spent most of the time with the Nurse Practiioner and a resident.  She talked with us about some of the information that we had covered before - but it was a good review.  It was soooo much to take in at first and I find I hear new things each time. 

His blood results showed that his A1C number had dropped to 12.1!  This is good news!  A good drop I think in just three weeks time.  He was 15 just three weeks ago.  Normal is 5-7.  This number looks at the rate of blood sugars over the last 3 months.  His now indicate an average of 345.  Still too high (obviously), but moving in the right direction!

Some other results.  There is still blood in his urine and he is being referred to a nephrologist to further explore.  The good news is that we've already had a renal ultrasound and CT scan which show no causes for the problem.  The other piece of (hopefully) good news is that there is some familial history of this and hopefully it will just be something that *is* that doesn't have a problem behind it. 

His weight is of concern.  Have I mentioned that he is really skinny?  Even though he is a good eater?  He is at the 5th percentile for weight.  :-(  He eats well and snacks often.  Not really sure how to boost his weight and am hoping that will come in time. 

We also spoke with a nutritionist.  Our goal is for Joshua to eat 14 carb choices (15grams of carbs per choice) each day.  That is about 4 per meal and 1 per snack.  I should have asked about getting more calories in without the carbs.  That is not easy!  She also said we don't need a scale - though I'm still interested in one as I think it would help a lot with fruits and  veggies.  Right now it is really a guess. 

We also had another medicine change.  We are off of regular and now on Novolog and Lantus.  She is hoping that this will just cover meals and not "stack" the insulin in the evenings when he has two shots.  So far, we are seeing much higher numbers.  While it is good not to have the lows, I'm not sure I really like the highs either.  He was feeling funny after going to bed and we checked at 11:20pm and it was 332.  That is really high.  I've emailed his dr and I'm sure she'll get back to me if we are to correct the dosage.

We are supposedly in the honeymoon.  I was hoping we wouldn't see these high numbers and that there might be a reprieve from some of the insulin shots for awhile.  That would be nice.  We are currently at 4 shots per day.  Pokes vary - some days have more than others.  Today it was 7. 

Other news - we are all healthy!!!  Yippee!!!  No sickness since Saturday.  :-)  We have more going on and I'll post more later.  Eliana started music therapy today and it was a big hit.  Rebecca is in a drama camp this week.  We are looking forward to seeing the production. 

More later.  It's time for sleep.

Love

Leslie

Posted in Diabetes

We have had no sickness for two days!!!  Praise God!  Hoping this is the end of it.  More than 2 weeks has been more than enough!

This is going to be short as Joshua and I are headed to Diabetes Clinic today for several hours.  I'll update more on this later.

Last night was another hard night for Joshua.  It's so hard to see your little boys body just racked with sobs.  No words necessary.  I knew.  I just held him and prayed.  I praised God knowing that focusing our minds on praise is a good thing.  Then I just prayed God's truth over him.  He is loved so very much.  God is carrying him and will continue to do so.  We prayed for a long time.

Afterwards we talked.  And laughed.  Not about what was troubling him, but just stuff.  It is still a lot for a little boy. 

"Will I ever be able to eat what I want and when I want it?"

Yes, but we'll need to figure out how this works for your body.  Still a lot to learn.  I'm hopeful that today will help a lot with questions we have and information we need. 

Thank you for praying for our family.

Love

Leslie

Posted in Diabetes

Do you ever just feel so inadequate for the job you are called to do?  I've heard people say that God equips you for all that he has called you to do - and I do believe that.  Is handling difficulty a calling though?  I don't think so.  I do know that God is there and will carry you through a difficulty, but that doesn't mean that it isn't without pain, suffering and anguish.

When Joshua wanted me to come up with him to sleep, I could tell something was on his mind.  He told me his head hurt.  Then he just started to cry. 

"I don't want to have diabetes." 

"I want to go back to the way it was before."

"I don't want to have so many shots every day."

"I want to be able to eat whatI want and when I am hungry and not on a schedule."

Does imagining hearing a little 9yo boy say all of this tug at your heart?  It's a lot for a little boy to handle.  To add to all of this that he has been sick for 11 days, well, it's no wonder his heart was heavy.  I know it could be worse.  It still doesn't make this easy though.

I just held him and cried with him.  I don't want him to have diabetes either.  If I could take it instead of him, I would in a heartbeat.  I know it's hard.  It's alright to cry.  I told him all of that and then just prayed.  I asked God to heal his body.  I asked him to pour His peace on Joshua.  I asked Him to carry my sweet boy. 

Yet, as I did all of this and was praying myself for words to comfort, words to help.  I felt so inadequate.  I remember so well feeling all of these same emotions after Eliana was born.  I remember people telling me that I would find a new normal and that things would get better.  Even though true, it didn't always make me feel better then.

I had to find the truth for myself.  I had to learn that God is good and faithful even when times are hard.  I had to learn that I needed God so very much just to have the strength to make it through the day.  I had to learn how weak that I was so that God's strength would show.  I had so much to learn and God was so faithful to teach me.  So many of those things people told me ended up being true, but I had to learn it for myself.  I learned about priorities and what was really important.  I learned about suffering and lots of medical stuff that I never wanted to know.  I learned about God's faithfulness and love.  I had to live it to learn it though.

I so wish that Joshua didn't have to go through all of this.  Nobody wants their child to suffer, to have to deal with a medical issue that will always follow them.  He can't forget about it for even a day - or even a couple of hours.  There is always that next poke and shot waiting. 

I do know that God is faithful and will be there for Joshua.  I know that God will hold him and teach him and that He loves him so very much.  I know that Joshua will become a stronger young man for having to deal with this.  I still wish he didn't have to do it.  I wish he could have had more of his childhood to just be a child - carefree and without the burden of diabetes.  Again, I know it could be worse, but this is still a lot to handle.

I tried to share a little of this and told him that I wasn't sure if would help at all.  Parenting can be so hard sometimes (though I wouldn't trade it for any other job in the world!).  I just wanted to be able to kiss him and make things better, but this is too big for that.  It's going to take time ... and trusting ... and learning.

Thank you God for always being there for us.  Thank you that you are faithful, true and loving.  Please guide us as we learn to walk this path.  Please strengthen us to the task that is before us.  Please shape us to look more like you.

Blessings

Leslie

Posted in Diabetes

Just wanted to update a little on our day.  It seems silly sometimes to just post and post about our lives, though I know some people are reading and do appreciate your prayers.  Your notes and comments have been sweet too.  :-)

I took Joshua to the renal ultrasound appt today a little after noon.  We took our bag with a game (thanks Rebecca as we have had a lot of fun with this!), puzzle book and more.  Joshua worked on lunch on the there.  I learned a lesson that I'm sure will be repeated.  We are carb counting now and administer his insulin (one of them) based on the number of carbs he has eaten.  Since he slept in late and hadn't had a shot yet, I wanted to be sure he got one at lunch.

I made a lunch, counted the carbs and figured he could take the food with him.  Well, about 5 min down the road, I realized he didn't have about half of his food.  So we turned around and went back.  I weighed the cost of being late (they wanted us there 15 min early) versus what not having the food would do to his body.  I choose the food.  He could not afford another low.  As it turned out, our timing worked out just fine too. 

The ultrasound was long.  I asked the sonographer if she would be interpreting the results and she said no, it would be a radiologist (dr) who would then talk with our ped.  I sat at the end of the bed while Joshua had the test done.  Up until that point, I realized that I had felt light about this appt.  I really viewed it as just something to cross off the list, not really searching for a problem if that makes sense.

Well, as we were sitting there, I saw her go back to an area that she had already studied and measured.  It was then that I felt fear seep into my mind and heart.  I knew that she was looking at something, though I didn't know what.  I knew not to ask as they can't tell you anyway.  My mind started racing with things that could be wrong.  I know that there is a link between diabetes and kidney problems, but surely not so soon.

I thought about how people sometimes comment that I am "strong".  I don't always feel so strong.  I think handling trials has made me realize how very weak that I am.  I probably thought I was strong before I had been tested.  Now, I know better.  I think that being strong is sometimes just doing what you have to do.  You do what you have to do for your children.  That is part of being a parent.  You don't always have a choice.  I also know that my strength comes from God.  I can't imagine doing any of this without Him.  He is faithful and always with us. 

So, I began to pray in that little dark room.  Praying for our brave little boy who has been through a lot in the last two weeks.  Praying for health.  Praying for his body to be fine.

When the testing ended, she had us wait as she wanted to check with the dr to make sure she had gotten all the pictures that were needed.  Then she asked us to wait for the dr. to come talk with us.  I began to feel nervous again - thinking that this must mean bad news.

The doctor came out to talk with us.  She had been unable to reach our ped and didn't want us to have to wait to hear the news.  (That was very considerate!)  She told us that his kidneys look healthy and that they did find one thing that wasn't normal.  The collection area of his left kidney is too large.  They aren't sure why.  It could be that this is normal for him or it could be a sign of an obstruction.  I left thinking that this was the end of it.

When we got home, we got in a poke and then a snack.  Then I headed up to take a nap.  I got in a short one before the phone rang.  It was our ped.  She talked more about the results of the test.  She doesn't want to let it go in case there is something wrong.  She wants another test (CT) done to see if there is an obstruction in his kidney.  This is unrelated to his sickness and his diabetes.  This is just another something going on in his body.

She told me that she was trying to find out if insurance would cover the test before getting it scheduled.  She wants it done tomorrow.  I'm guessing we'll get a phone call in the morning to set it up.

I also  got a call from the endo wanting to know how Joshua was doing.  We were both very pleased with his numbers today.  Most in the 100s and one in the 200s.  No lows!!!  Yippee!!!  This new med seems to be doing a better job.  She again said what a great job we are doing taking care of Joshua.  She is confident that we could move to an insulin pump soon if Joshua would like that.  We'll definitely consider this, but first I want to get rid of the sickness.

Christopher, Daniel and Joshua are all feeling better this evening.  They all slept a good bit today and were able to eat supper.  Roger just told me that he is feeling a little queasy.  Praying that he doesn't get sick too!!!  Praying that Eliana would be spared as well.

As always, thank you for praying.  I'm off to sleep now.

Love
Leslie

Posted in Diabetes

Last night was a long night - or maybe better said, a sleepless night.  Roger and I were up talking some (should have gone to sleep).  Christopher started feeling badly.  He rarely gets sick. 

By 2am, it was time for Joshua's finger poke.  His numbers were good.  181.  Thank you God!  We are really trying to avoid crashes/lows!  Off to sleep.

At 4:30, I was awakened because Joshua's tummy hurt.  I went to his room and sat by his bed.  A little while later, he began throwing up - and having diarrhea.  :-(  Poor little guy feels so crummy.  In a very disappointed voice he said, "Doesn't look like the new medicine is working".  I assured him that it could very well be working and helping, but not against whatever is making him so very sick. 

After trying to go back to sleep, I was awakened awhile later by a noise.  I rushed to the bathroom to find Daniel sick.  I helped him and then got him settled and then tried again to sleep.

It seemed that 8am came very early (I'm hoping for a nap later today!).  I got up to check Joshua's numbers.  Good  again.  130.  He is asleep on the floor of my bedroom.  (Not my top choice since the people sleeping in that room haven't gotten sick yet - but I hate to move him too.)  I can't imagine the range of emotions that he must be feeling.  I remember how scary it is to feel sick and so out of control of your body.  And then the pain and discomfort.  It's just hard.  

I called his dr and she said I could let him sleep.  I'll only give insulin as needed for what he eats.  That is good news.  She was pleased with his numbers too and was very encouraging about what a good job we are doing in caring for him.

I hear my name being yelled and go upstairs to find a mess.  :-(  Poor Daniel has gotten sick all over the floor of his room.  I start cleaning him up and the phone rings from the other dr's office.  I talk briefly and she says she'll call back and leave the info on our message machine.  Good plan.  I spend time cleaning up Daniel and the carpet.  Get him settled into the "sick room" (Christopher's room b/c it has a private bathroom). 

Time to start laundry - I'm going to try to do all the sheets today and towels and maybe air out the rooms.  I just don't know what else I should or could be doing to try to clean up around here.  I'm open to ideas if anyone has them. 

I've cancelled Eliana's therapy - who wants to come into a house with so much sickness.  Joshua has a renal ultrasound later this afternoon.  (Roger will be able to come home to be with the other children - again who would want to come hang out here?)

In the midst of all this mess, I still have much to be thankful for.  I'm thankful that Eliana has not had to deal with this.  Please pray that she would stay well.  Roger and I have also stayed well and I hope and pray that continues as well.

I'm thankful that we have great doctors, willing to go out of their way to help us.  I'm also thankful for their encouragment. 

I'm thankful for friends and family who are praying for us.  Again, the encouragment is wonderful.  Thank you!

I'm thankful for God.  I can't imagine walking this without Him.  He gives me a peace in the midst of all this, well, mess.  The calm in my heart could only be from Him.  It doesn't mean I'm not concerned, I am.  I trust that the One who loves my children more than I can even imagine is holding them (and me) in the palm of His hand!  He is good. 

I'll hear the results later this afternoon/evening from the renal u/s.  Other than that, I'm not expecting to much news to share.  Three children sick is quite enough for now, kwim?  :-) 

Thank you friends your prayers and encouragment!

Love
Leslie

Posted in Diabetes

Well, today (Sunday) has been more of the same.  Isaiah threw up during the night.  :-(

Joshua's numbers were fine at breakfast (210), had insulin and breakfast.  Within 2 hours, he told me that he felt badly and wanted to be checked.  49.  He is doing a LOT of crashing which is very concerning to us and to his doctor.  Gave him juice and crackers and got him back to 108. 

He continued to feel badly and had loose stools.  Another 2 hours and he is low again.  Ate lunch and called the pediatrician.  I was thankful that Eliana's wonderful doctor (ped) was on call and I was able to get an appt with her at 1:40.  Even though we have other children that have been sick, Joshua has been sick on and off most of the last 10 days.  That is just too much. 

It was good to see her and she joked with me asking if I was going to become a nurse when I grew up.  She is a great doctor and tenaciously fought for Eliana in so many ways.  I knew she would do the same for Joshua.  We talked about his history and she was impressed with my notebook(s) detailing everything and the sheet of info I'd typed for her that I knew she would want regarding his sickness and when it occured.  She told me that she thought Eliana had prepared me well to handle this.  I agree.

We talked a good bit.  She was glad that knowing the other children had been sick that it seemed more like a virus than something terribly wrong with Joshua.  It may just be the combination of the diabetes and the virus is just too much for his little body right now.  Joshua was able to give "samples" to be tested.  He even commented that being a doctor was a great job because you got to examine "pee" - and get paid for it.  LOL  Love a little boy's sense of humor.  (I hope this doesn't gross anyone out!  Well, a lot of this is gross, so sorry!)

While we were waiting, she called Joshua's endocrinologist (who is also wonderful!).  They talked for awhile and then I also talked with her.  What I didn't realize is that while I wasn't standing there, that one dr had wanted Joshua admitted to the hospital.  The other told her I could handle it.  Then how about the ER?  The other thought he would be better at home.  That is a great vote of confidence, though a little unnerving too, kwim?

Here are the changes.

• Change in meds.  One has been eliminated and the other is to be based on carb counting.  A new med is being added (lantus).  The hope is that this will eliminate some of the spikes we are seeing in his blood sugar levels.

• Joshua will be getting an ultrasound tomorrow of his kidney to see if there is anything going on there of concern.

• Lab cultures will hopefully be back in a couple of days and we will have more information from that.  We will see the ped again on Thur

Joshua felt really crummy the first half of today.  He even asked me if he would get to a point where he didn't have stomach aches every day.  :-(  I assured him that he would.

Joshua's endo dr called this evening.  She has been so wonderful about emailing and calling us!  She is really concerned about Joshua and even told me that.  She is concerned about how many lows he is having.  (Several a day)  We talked about his new meds regimen and she wants his  numbers tonight in an email and wants me to page her in the morning to discuss his numbers so we can decide together his med dosage.  I'm so thankful for her availability, interest and desire to get this figured out.  She has been analyzing his numbers and believes that we may be able to help him by making the changes in his meds.   I hope and pray she is right!

I'm thankful for such wonderful doctors!!!  God has blessed us greatly in this area by hand-picking people who have gone over and above in order to help our children.  Thank you God!

More later (probably tomorrow) as I need to go test and get snacks ready.  Thank you for your continued prayers.

Blessings

Leslie

Posted in Diabetes

Thank you friends for your hugs and prayers and words. Your encouragment means a lot to me.

Joshua was stable last night - 2am numbers were in the 200s (not uncommon for him at this point - and much better than too low).

This morning - 87. Low for a morning reading for him. Ate breakfast. Couple of hours later, he said he felt "funny". 67. Too low. Juice. Tried to get him to eat a heavy snack and he just isn't up to it. Had some grapes.

I have an email in to his dr and will call if I don't hear back soon. Not sure if this is sickness, too much insulin/not enough carbs, or going into the "honeymoon period".

Someone had asked if this could be controlled by diet.  Joshua is insulin dependant. For the rest of his life or until they find a cure. (I know this and still writing it makes me tear up.) He will still need to work on diet (as do those with type 2), but he will never be able to stop taking insulin. His antibodies have attacked his pancreas and it is not able to produce insulin. This is one of the huge differences between type 1 and 2 diabetes.

He will go into a "honeymoon period" where his pancreas will give one last go of working. It will seem that he is cured and all is fine. This *will* happen, but we don't know when. Nor do we know how long it will last. This also makes me   One of the doctors told me that parents often call it "the big tease". Yeah, that seems about right.

In the midst of it all, I'm thankful we are close to wonderful medical care. I'm thankful for those that have figured out how to help Joshua so that we can learn to help control his numbers so that he can live and do the things he wants to do in his life. I'm thankful for an amazing little boy who is taking this so very well. I'm thankful that God is holding us through all of this. I'm thankful for family and friends that encourage, support and pray for us.

This is hard, but I still have so much to be thankful for!

Also Daniel is still sick.  He seems to be feeling a little better than last night, but is quarantined at the moment with a good movie. 

Blessings

Leslie

Posted in Diabetes

Joshua is having fluctuating blood sugars - and they are low.  We tested at 9 and it was 68 which is low for him (under 80).  Gave juice and then a snack.  Sugars better 109.  Felt badly an hour or so later and tested again.  49.  That is really low.  Juice again.  Next test 108.  He still feels badly though and we don't know if it's a low or being sick.  Yes, he was sick again this morning. 

Please pray for him.  Lows can be dangerous and we just want to do the right thing for our sweet boy.  This combined with the extended sickness has been hard.

More info on low sugars for type1.  Don't read if it will worry you.  I know this is common, but it is our first time dealing with a sugar that doesn't seem to be responding as it should.

Will update later.  As you are praying, know that we still have a virus in our house.  Daniel is down with it now.  :-( 

Short update:  Joshua is asleep now and we'll be checking on him again at 2am.  Hopefully he is stable. 

He felt badly after the juice and snacks.  (Had 2 rounds of snacks and 2 juice boxes.)  Not sure if it was just the food/drink or the sickness he has been battling.  He asked me when this was going to be over - the diarhea and vomitting.  :(  It has been going on for almost a week now - though not non-stop. 

I'm off to sleep now.   Will update tomorrow.

Love
Leslie

Posted in Diabetes

My mind is just flooded with thoughts of diabetes these days.  So many new things to learn and remember and do.  We are working hard to do the best we can for Joshua.  He is doing an amazing job.  He likes getting things ready for his finger pokes - and he does it all beautifully.  I know that one day he'll be ready to do his own poke and we're waiting.  He can do it when he is ready. 

We had nothing scheduled today, so it was a lazy day at home.  Joshua ended up sick again this morning.  Stomach hurting.  Thankfully it didn't last too long.  It happened after breakfast.  This has happened on Fri, Sun and Tue mornings.  Friday was the worst by far.  I called his dr to talk and she wasn't sure what was going on with him.  I'm going to try cutting back on dairy and also some of his carbs to see if that helps. 

His doctor (from the hospital) also said that she had read his lab results.  One of his antibodies was high which confirmed that the diabetes was caused by an autoimmune attack of the pancreas.  Nothing caused this to happen.  It was not "laying dormant" or waiting to happen.  It was just something that went wrong.  It was most likely a virus that his body responded to and the antibodies just got confused and attacked his pancreas.  It  is not something that could have been tested for or prevented.  It just happened.

He was also screened for celiac disease which came back normal!  Praise God!!!  Always thankful for the good news!

I also talked with Joshua's case manager from the insurance company.  We've been playing phone tag and finally caught up.  She was so very nice!  And knowledgable too!  She asked a lot of questions and also shared information.  She shared resources and tips - and then very kindly sent all that we had talked about to me in an email.  Isn't that great?!  I wish all of our dealings with insurance could be with someone like her.  She has told me that she will be following up with me to see how things are going.  That is really nice.  She gave me information that I needed and hadn't thought to look up yet. 

So, even though nothing much was going on, I just felt overwhelmed with it all today.  I'm not sure why.  Today wasn't much different than yesterday.  I wonder though if it's just because I haven't really had time to cry.  I held it all in at the doctor's office and hospital not wanting to upset Joshua.  It is a lot though and can feel heavy.  When you read things - and I do have to read things - sometimes it is just that one sentence that hits so very hard.  Like the organs that are put at risk due to diabetes.  Mostly, I just try not to think about those things.

After feeling my spirits sink, I knew I needed time to rest and refresh.  I went to my room and just layed on the bed.  I thought I'd take a nap, but ended up just talking to God.  I know He is holding me ... all of us ... as we walk through this and I'm thankful for that. 

I went back and read again in Joshua.  I was reminded to be strong and courageous.  Sometimes though, it is just hard to be strong.  I feel weary.  I know that my strength is from God and I need to remember that.  In chapter 1 verse 8, I was reminded to meditate on God's word day and night.  One more reminder of the importance of hiding God's word in my heart (and helping my children to do the same). 

This book of the law shall not depart from your mouth, but you shall meditate on it day and night, so that you may be careful to do according to all that is written in it; ^(B)for then you will make your way prosperous, and then you will have success.  Joshua 1:8

Not too long ago, I was reflecting on the difficult times after Eliana was born.  It was a time that I clung to God though and learned so much.  Why does it take difficulty sometimes to turn our focus where it needs to be?  I think that God gives us grace, peace and wisdom when we need it and for the situation that we are in.  He doesn't give us the strength to handle something that He has given to someone us.   So, in the midst of this trial, I praise you God because you are good.   

It's late and I need to go to sleep.  Tomorrow (Wed), Joshua has an appointment with an endocrinologist to follow up.  I've been told to expect it to be a long one.  It will be our first outing - taking along meds, supplies for pokes and shots, glucogan (for an emergency), snacks, juice boxes (for lows), log book, ... hmmm, am I forgetting anything?  Seems like a lot.   Thankfully if I forget something, we'll be at a hospital.  So for this outing, no worries.

I'll update more tomorrow.  Sometime too, I'll share about our week at the beach, our "pirate/ocean fun boxes that we started last Monday - the morning before we headed to the hospital and our late Father's Day (tonight). 

Thank you for your prayers for our family.  We are grateful that we are being lifted up.

Blessings

Leslie 

Posted in Diabetes

Sorry this is late in coming.  I can't even tell you where the day went.  Therapy.  Washing sheets - lots of them.  Some cleaning.  Counting carbs and more. 

At this point, we are all well and healthy!!!  Yippee!!!  Praising God for this blessing.  Health is definitely something that is easy to take for granted and being sick really reminds you of what a blessing good health is to each of us.

Joshua is doing really well.  I couldn't ask for him to be doing any more than he is doing.  He is reading labels and helping me to count carbs.  He is learning how to set up his glucometer and his "poker".  He even successfully gave Roger a poke tonight and did a reading on his blood sugar.  (It was fine.)

Rebecca asked to fix lunch today.  This isn't a big surprise as she often fixes lunch for everyone.  What was extra sweet was that she also figured out the carbs for Joshua's meal and measured it all out for him. 

Sorry this is short.  My mind is full - but also sleepy.  I'm not quite used to this new routine.  We are thankful for your prayers for all of us.  I'll try to write more tomorrow.

Love
Leslie

Posted in Diabetes

After leaving the pediatrician, we went home to pack a few things and to head to the hospital.  I made a few phone calls as we were rushing around.  We didn't pack much as our ped told us we would probably just be there overnight.  We quickly learned differently when we arrived.  Roger met Joshua and I at UNC hospital.  Our ped had given us the choice of UNC or Duke.  I told him I really only knew Duke.  He said if we didn't care that he would like to send us to UNC as he thought a lot of the endocrine team there.  That was fine with us. 

BTW, I didn't take this photo as we were entering, but rather leaving.  We entered through the ER.  They have a separate ER for children too which we thought was a great idea.  We arrived before 5pm and we quickly taken to a room.  We saw about 5 doctors (teaching hospital) and one nurse.  (They were all really nice.)  The nurse knowing how hungry and thirsty he was, went to get some of her own drink (a sugar-free mix) to give to him.  He loved it.  Wasn't that sweet?!

I was glad that we brought games.  We spent some time playing Phase 10 (card game).  It helped to ease the tension of knowing you were sitting in an ER waiting for news that wasn't going to be great.

Because they were waiting for lab results, Joshua wasn't fed.  And he was very hungry!!!  One of the doctors later explained that because his body was not producing insulin, the food that he ate was not being broken down and taken to the body to use for energy - instead it just passed through leaving him hungry all the time.  Poor little guy!

He did finally get a tray of food about 9:45 or 10.  He loved it and downed it quickly.  (He got another tray when we got to the room as he was still hungry!) 

The lab results were "positive", but not conclusive on the type of diabetes(will take a week or so?)  Everyone thought we were looking at Type 1 or Juvenile Diabetes.  (There really is no doubt as he does not fit the profile of someone with Type 2.)  This is a life-long disease for which there is no cure ... yet.  He will be on insulin for the rest of his life.  He will have blood sugar checks multiple times a day.  He will also have diet and eating changes.  I'll talk more about all of this and the difference between this type of diabetes and Type 2 in another post.  BTW, we found out that his blood sugar numbers in the ER were 643!  (Normal is 80-120)  They were very surprised that his body was handling it as well as he was.  Most children with numbers like this end up in ICU as their body goes into DKA from lack of insulin.  We are thankful that his was caught early enough to prevent that. 

After more than 5 hours in the ER, we were finally taken to a room.  Joshua was excited to be given a ride.  You have to look for the silver linings wherever you can find them!

After a long, long night with several pricks and pokes, several shots of insulin and not much sleep, he was wondering if anyone would come to see him.  He was excited to see his family and friends.  (I'm missing pics of visitors as well as of doctors and nurses.) 

Joshua has received wonderful thoughtful gifts as well.  Things he has loved like books, a puzzle globe, balloons, games, a photo album with pictures (and writing about) a field trip, a movie, sugar free candy, and legos.  He has been well loved on.  As has our family with food from friends.  Thank you all for loving on us!!!  It really helped to bring joy into this time of so many unknowns.

There is a play room at the children's hospital.  It is big with a huge vaulted ceiling with lots of lights.  The room is beautiful with toys, play areas, books, games, computers and more.  It is wonderful.  There are several times during the day when you can go up for an hour. 

There is a large climbing structure in the middle of the room.

In one of the play areas, Eliana goes for the doll or "baby" as she calls it.

Joshua and I played a game of Risk.  We didn't finish before it was closing time and they let us keep the game set up so we could come back later and finish it up.  WAsn't that nice?  For the record, Joshua won!

These were Joshua's nurses on the last day - really nice!  They were so encouraging to ME.  They told me that they could tell that Joshua was going to do well.  They could see that he has strong family support and is learning quickly.  They addressed some of my fears and concerns with optimism and encouragment.  One even gave me a big hug!  They were great!

I really liked Joshua's night nurse too and she was with us all three nights.  Positive, encouraging and took time to talk and listen.  I mentioned that I really liked her to our day nurses on the last day.  They said that she had told them about us and that she really liked as too.  :-)  She told us that they really worked to build relationships there - and I could tell.  Our stay here was so very positive!

During the days we had training sessions with our doctors, dieticians and nurses.  We learned more about the disease, how to administer the blood pricks and shots, what to do in the case of an emergency (high or low blood sugar), how to count carbs, what foods he needs to eat and not eat and much, much more.  We were given a LOT of great information to read - both for us and for Joshua.  We were encouraged every step of the way that we could do this and it would all work out well.  We were also told that it would be hard at first and I appreciate their honesty in this.  We had visits by the chaplain, a man with an ice cream cart and volunteers with books.  Did I mention that this is a really nice hospital!

Joshua liked getting a ride in this transport.  We had seen them when we walked around the hospital one evening.  He wanted a ride then and I told him that he might get one when he left.  We also visited the butterfly garden which is a nice little outside courtyard decorated with beautiful outdoor artwork, the cafeteria (Joshua carefully checking the carb counts on foods) and the lobby area which had a Victorian dollhouse which was amazing.

This is Joshua's room.  It was big and nice!  One of the nurses said that they called it the "good luck" room because all of the patients in there did really well.  I have to hope that that would be all of the rooms!

They have decorated the children's area so nicely - including pictures painted on the windows outside the rooms and butterflies on the ceilings of the rooms.

Outside of the hospital in the parking deck - about ready to go home!

Our experience at UNC Hospitals was very positive!  I"m so thankful that we live so close to such excellent medical care!  I never knew we would be taking advantage of the hospitals as much as we have.  We'll be coming back here regularly for checks, clinics and teaching session with a dietician.  We have a follow-up appt next Wednesday.

In the midst of all of this, we continue to see God's hand at work - in the staff at the hospital, in our friends and family.  While I am not thankful that my sweet son has this disease, I am thankful that we have a strong and faithful God walking with us every step of the way!  Thank you again for your prayers and encouragment!!!

Blessings,

Leslie

I'm sure I've left things out.  This was a long post and lots of switching back and forth between writing and uploading pictures.  If you have questions, please ask!  :-) 

Posted in Diabetes

Joshua and I have just returned from the doctor's office.  They did a non-fasting blood and urine test on him.  His numbers were so high that they were not measurable.  The test measures to 500 and his is higher than that.  Normal is 80-110. 

Since his numbers are so high, they are wanting to get him back into normal range.  We will be leaving shortly to admit him to UNC hospital.  While we are there, we will be learning more about his diabetes and how to manage it. 

I greatly apologize for sharing the news this way.  I know some of you will read this before I have a chance to call.  I'm sorry. 

Please pray for us as we walk this new path.  I'm not surprised.  I felt like this was coming, and that mommy intuition is so often right.  I know this is not a surprise to God and that He is holding us in his hands.  His is good, true and faithful. 

I'll update more as I'm able to from the hospital.

Blessings

Leslie