CT Scan

Sorry for the late update. 

I took Joshua in this morning for his CT (CAT) Scan.  They told us just to walk in.  We went and waited for about 30 minutes.  During this time, we realized that I had forgotten his "poker".  I packed it, but forgot to slip it in my tote.  Thankfully, we weren't far from home and we were in a medical facitilty.  I did bring snacks so he was able to keep his blood sugars up.  We read aloud in a book (Hatchet - thanks Laura!) and played some games.

When it was time to go in and he saw the machine, I could see that he was visibly scared.  The technician that worked with us was wonderful!!!  She explained everything and answered his questions (he always has questions).  He happened to have on an outfit with no metal so that he didn't have to change into a gown.  This was probably the only pair of shorts that would have worked like this too!  She did a trial run of him laying on the bed, being lifted and then into the machine so he could see what it would be like.

The test itself went pretty quickly.  Then I chatted with Joshua while she checked to make sure they had all the images that were needed.  I had watched with her as the scan was going on and thought it was neat to see the images of his bones and thought Joshua would like that too.

I asked if she would mind him seeing that picture when it was completed.  She did so much more than just show him that one neat picture.  She scrolled through all the pictures and pointed out his organs, bones, spinal cord and more.  When she got to his stomach she said it looked like he had eaten cereal for breakfast - and he had!  She also showed him his muscles and his skin and commented that he had NO fat.  This is true.  :-)

As we were leaving, she told me that she would be sending the results to our ped office right away.  She also said that if we hadn't heard anything by this afternoon, we could call and ask.  Again, very nice!

We then went home.  I forgot to mention we had one sick today - Daniel.  Sick again in the middle of the night.  Thankfully everyone else is feeling better.  I sure hope it ends soon!

Our ped called this afternoon to share the results.  His kidneys looked good - no obstructions or other problems.  She did say that his left kidney is "puffy" in the collection area and is something that she will want to keep an eye on.  She doesn't know what caused it, but it doesn't seem to be due to any problems in his body right now.  His other organs looked good too!  Also, one of the cultures came back - negative for E. coli.  Thank you!  She is still waiting on some other cultures.  I told her that I knew it wasn't salmonella - that one was very wicked and much, much worse than this has been.  It was horrible!

She mentioned that this might be rotavirus.  She asked if I'd extended nursed my children and I said yes.  She thought this probably protected them while they were young.  Eliana had the shot for this and that may be why she hasn't gotten sick.  We won't know for sure though as this one wasn't cultured - just the "big boys" as she said.  I think it must be something we picked up from the hospital.  Who knows.  It doesn't really matter.  I just hope it is done!

Joshua's numbers are doing good again today.  No lows!  The new med seems to be working well in helping to keep him balanced.  I'm thankful for that.  I also talked with his endo dr who called to check on him.  Isn't that wonderful to have doctors that care so much to keep such close tabs on their patient?!  I'm very thankful for these great doctors and their willingness to go above and beyond when it really is important.

I'm hoping that by tomorrow, I can post some pictures, maybe share some other things that have been going on.  I"m hoping that we are at the end of the sickness path and then can just walk the new path of dealing with diabetes.  I'm thankful for many things and appreciate your prayers.

Love
Leslie

Monday Update

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

Monday morning

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

Visit to ped, talks with endocrinologist

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

Sat morning update

Thank you for your prayers for our family.  We woke up this morning to everyone feeling well.  :-)  We decided to head out to a local 4th of July celebration. 

Soon though, Joshua began to feel poorly (diarrhea).  We then decided that I would stay home with him and the rest could go to the celebration.  It ended up being a good decision because by 9:30 Joshua was throwing up.  He didn't eat much for breakfast, but none of it stayed down.  Poor little fellow.  I started reading him a book, but after getting sick, he was just wiped out.  He is sleeping now.

I emailed some with Joshua's endocrinologist yesterday.  She is so wonderful!!!  We have adjusted his meds in hopes that he won't keep having lows.  He had another last night before bedtime.  He was then high in the middle of the night (333) and fairly high this morning (over 200).  I wish I knew what was going on.

If any of you reading this are dealing with Type 1, did your child go through anything like this?  The stomach issues?  I know some of it is viral as I've had 3 other children throw up in the last week and half.  His is spaced out though.  Is he just not healing or catching it again?  I think that the diarrhea (I apologize if this is TMI) is not just a viral thing.  I'm not sure what it is though. 

I know if this continues that I will be taking him to see the ped.  Just debating whether I need to do it over the week-end.  Prayers for wisdom would be appreciated.  It's not "urgent", but I don't want it to get to that point either, kwim?

We have managed a few fun things in the midst of this yuck.  I redeemed coupons with 2 of my children yesterday and will post more and add pics later.  I had hoped to do something fun with Joshua this morning, but he is just too worn out from all of this. 

I hope you are having a wonderful 4th of July.  I'm thankful for the many freedoms that we have in this country.  I'm thankful for the men and women who have sacrificed much so that I could enjoy freedom.  I'm thankful for Jesus for giving me freedom from sins.  Freedom is a wonderful thing and gives us much to be thankful for each day. 

Blessings

Leslie

Friday morning update

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

Thur 11pm - If you are reading, please pray

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

Late Wed Update

Thank you for your prayers.  Things seem fine again - as they have the other times.  So far, this is the 4th day for Joshua being sick.  Poor little guy.  He has had a great attitude about it all too.

My moring started with being woken up by Isaiah to let me know that Joshua had gotten sick.  Isaiah stayed with me and helped me to clean things up too.  I thought that was really sweet - and not something all of mine would have willingly done.  LOL  I've found God to be gracious in giving me a peaceful spirit about all the yuck I've had to deal with this week.  That has been a blessing.  I wish I could say that this was true all the time.  So much to learn. 

Joshua and Rebecca spent most of the day in their rooms.  They both read books and worked puzzles.  Joshua has gotten good use from the gifts he has been given while he has been sick.  He worked on the neatest puzzle today - it's a globe worked in 3D.  I'll try to take a pic and post it soon.  It's very neat!

By lunch, both the sick children were wanting to eat.  They felt fine by afternoon and have been eating well.  It's a curious virus that is for sure. 

Joshua's numbers today were pretty good considering he was sick.  He last number though was his first official LOW.  It was 68.  I was stunned to see that come up.  So was he.  I asked him how he felt and he said his head felt a little funny.  I explained to him that this was what a low felt like.  That anytime he was feeling not quite right that he should let us know so we could test him and see how his blood sugar numbers were doing.  We gave him a juice box and a strong snack.  I expect better numbers at 2am. 

For now, I'm hoping and praying that we are done with throw up and diarrhea.  I really don't want anyone to get sick any more!  I'm thankful it's not worse, but it has been going on for over a week now.  I really thought we were done with it last week. 

I did talk again with the doctor today.  His appt is rescheduled for the 14th.  That was the soonest they could see us.  I really wish it were earlier, but this will be when it is.  In the meantime, we just keep an eye on things and send in his numbers weekly. 

More later.  It's time for sleep. 

Blessings
Leslie

Wed - throwing up ... again

Wow!  This is getting old.  I keep wondering if it's something more than a virus.  It's just odd.  The only thing that make me think it might be a virus is that his brother has been sick too.  Also in a weird sporadic manner.

I could type details, but basically for Joshua, he has been sick in the morning - usually after breakfast.  He is fine by lunch and has been eating well.  I've wondered if it is a reaction to something.  We are going to cut out all milk for 3 days to see if it is a lactose issue.  He has been sick on Fri, Sun, Tue and now today.

I talked with the on-call endocrinologist this morning and she has advised that we keep our doctor appointment today.  I hate to take him in if he has a virus and have prayed for clear answers.

UPDATE:  Well, I guess this is my answer.  One of them anyway.  Rebecca is sick too.  Same type of sickness so I'm guessing we have a virus here.  I've cancelled Joshua's appt for the day.  Hoping we can get it rescheduled soon. 

Please pray for health for our family.  I really don't want this making the rounds - especially for as many days as it has been going on.  Thank you!

Would you pray for healing for our sweet boy?

Thank you,

Leslie

. 

Update on Joshua, diabetes and happenings here

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