Life is ... busy!

I'm feeling swamped and trying to stay on top of things.  Actually, things are going pretty well, but my free time for blogging has suffered as I've tried to organize and get on top of other things.  (I actually loaded a lot of photos tonight so hopefully I'll get to that later this week.)  I'm working through my emails (slowly) and trying to tackle other projects.  (If you have asked for the form I made for Eliana, I haven't forgotten and will get to that soon.) 

Headed to sleep soon, but wanted to share a little something cute. 

Christopher is working out and often doing push-ups.  Eliana loves it when he does as she thinks it means it is time for a ride! 



Hope this brings a smile to your face.  It always makes me chuckle.

Praying God's blessings on your day!

Leslie

Health Update

Thank you for your prayers.  Things are much better here today!  Health is such a sweet blessing and one we have learned not to take for granted over the last several years. 

Eliana was finally able to eat something last night about 7pm.  She spent a lot of the rest of the night with painful diarrhea though.  She had a long night's sleep - about 12 hours.  She woke up feeling much better.  She was ready to eat this morning.  I gave her some Kix cereal to hold her until I could get some oatmeal ready.

An unexpected sweet moment came during this time.  When Eliana finished what was in her bowl, she began to protest.  I looked at her and then she said and signed "more".  I asked her to say please which she did.  I was happy to comply with her request.  We did this multiple times with her learning to say "more" first instead of just fussing.  She began to add please a little more quickly too.

Having her initiate speech is a wonderful thing!  It's something most children do and we can just take it for granted.  Each little mileston with Eliana though seems something to be celebrated.  If we can get her to move to two word sentences, that too would be a great milestone.  Something small, and yet big too.  It is just so sweet to hear her little voice telling me what she wants.  It is so nice to have her communicating! 

She has had a good day.  Playing, eating, no sickness.  What could be better?!

We tried to do a school day and had a pretty productive one.  At the moment, my oldest children are cooking dinner as part of their geography course.  We are having a meal from Maine.  It looks yummy. 

Earlier today I did something I should have done in a more planned fashion long ago.  A few days ago I began making a list of specific games, toys and activities that could be used to help Eliana with certain skill groups.  I tried to think of things in a variety of areas - speech, oral motor, gross motor, fine motor.  I also just tried to think of toys that we have and how they can be used in a productive manner.  I made a grid (2 pages) of these skills and printed it out.  I'm planning on having a teaching time with everyone in the family so that when they are playing with Eliana it can be done in a way that really benefits her.  We all play with her so there is no reason we can't learn to adapt our play a little bit so that she is learning while playing.  I'm hoping this will help me to stay on top of her learning too.  I can post more about this if anyone is interested.

The rest of the family is feeling fine.  Joshua had no relapse after being sick on Monday.  I emailed his numbers to his doctor last night and she said that everything looks great.  He typically has a spike at lunch time because we are giving snacks without a dose of insulin.  She said this was all still fine.  If/when he moves to a pump, he will correct it then.  For now, we are both (dr and I) comfortable with his regimen and not wanting to add another 3 shots a day for snacks.  That just seems like too much!

More later.  Still have things I want to do in a catch-up post like our trip to the beach.  We spent a wonderful week at the beach with my family just prior to Joshua's diagnosis.  I have some great photos to share.  It may be the week-end as most of my spare time now is in planning and schooling. 

We are thankful for our healthy bodies.  Thankful for good food to put in them.  Thankful for friends and family who are praying with us.  Thankful for a wonderful and good God.

Blessings

Leslie

Quick update - Tue night

Thank you friends for praying and for your hugs too!

She had a good long nap and has woken up ... cranky. (Which is very much out of character for her) She has been able to keep down some water, but not interested in food at all and I'm not pushing it. I'm just really not sure what to do to help her.

Sorry this is short. Just wanted to update.

Love,

Leslie

Eliana's turn - small request for prayer

Maybe this helps to confirm that Joshua's sickness yesterday was a virus of some sort.  That is good news in some ways, though I sure wish it hadn't been Eliana's job to be the messenger.

Eliana is throwing up. I thought it was just sinus drainage, because she woke up at 6am very stuffy and clearly dealing with internal drainage.  I began to doubt the drainage theory when it happened a second time. Now that we are up to 8 or 9 ore more, it is something else. She is miserable. I'm holding her. She's tired, but not able to sleep as she keeps getting sick.

Just interupted. She is keeping nothing down. Not even water.   I've spent the morning doing LOTS of laundry, changing clothes (both of us), giving a bath and well, doing clean-up.  So much for our first week of school,huh?  Actually the children have been doing school and helping out.  They have been great!

As I was thinking about this post while changing clothes, I remembered one of my last "small request" posts. It was for Joshua on the day he was diagnosed with diabetes. It just hit me and made me cry. The grief process can just hit out of nowhere sometimes, kwim? I'm not thinking this is like that. Not sure at what point this sickness becomes more than I need to try to handle at home though.

THanks for praying.

Quick update on things here

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

Juvenile Diabetes Research Foundation

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

Small health update

All are healthy here!  Yippee!!!  We thank God for the blessing of good health.

Eliana is having some drainage issues which are bothering her, but it isn't sickness, maybe allergies?  Not really sure how to help her.  The drainage is all inside not out.  I can write more but not sure any one wants the yucky details.  lol

Joshua's numbers are still fluctuating a lot.  Today has been one of the hardest.  He went from 295 to 96 in less than 2 hours.  Needless to say, he didn't feel too well.  Hopefully we have it corrected and since it wasn't technically a low, it isn't as scary or dangerous for him.  I know that all the fluctuating though isn't great for his body either.  No news yet on the nephrology referral. 

More to share later.  Thank you for your prayers.  Hoping to have some down time this week-end.  My sweet friend Catherine is coming to visit so we can have girl time.  :-)  I'm looking forward to it!

Love
Leslie

Happy Birthday

Just reading those words probably brings up thoughts, memories, images of years gone by.  I'm guessing most of you have happy memories associated with these words.  I know that I do.  I think of ...

candles - and a little one trying hard to blow them all out

cake - especially that one for the first birthday smeared all over your face

party - a time to share with family and friends

gifts - a squeal of delight to know you have been given something undeserved

attention - for a day anyway, the focus is on you.  Who doesn't enjoy a little positive attention.

so many sweet memories of birthdays ...

My birthday is coming up soon (next month), but that isn't why I'm thinking about birthdays now.  Also coming up is the birthday of a little girl that I have grown to love.  I didn't intend to fall in love with her.  I've never met her and I know very little about her.  I've prayed for her faithfully for almost a year though and in that year, I've fallen in love with a little girl living across an ocean and far away.  A little girl called Tonya.



I started off just wanting to make a difference in the life of another child with Down syndrome.  God has called us to care for orphans and one way our family has done this is to sponsor children in lieu of gift giving at Christmas.  Last fall, as we looked over the listing of children, we chose a child that seemed to be in great need.  She was 3 years old and her listing said she was at significant risk and needed to be adopted soon.  I began to pray.  I didn't know that the power of prayer would lead to more than just concern or sympathy, but love for this child I don't know.

She has beautiful dark eyes.  I wonder if she has even seen a candle or a birthday cake.  She has such cute chubbie cheeks.  Does anyone ever kiss them?  I wonder so many things.  Is she loved?  Does she like to laugh?  Does she have much to laugh about?  Does she like to play outside?  Has she ever been given a gift?  Will she ever know the love of a family?

I can't tell you how many times I've cried as I pray for sweet little Tonya.  I pray, urge, and yes, beg for God to send her family to go get her.  I pray that she will be safe and kept in the baby house (orphanage) until a family can bring her home. 

Why the tears?  Well, beside the obvious of her needing a family, is the fate of this precious child if she doesn't get a family.  At age 4, she can be transferred to an institution.  Here, she will most likely die within the first year.  I've been told that death is a blessing as some of these places are just horrible.  I can't type more as I'm crying now just thinking about it.

Sweet Tonya's birthday is next week.  She will be four.  Will you join me in storming the gates of heaven for this precious child?  I so want for her to have a family to love her, to sing happy birthday and to give her the life that every child deserves.

It's not just this sweet child.  There are thousands more all over the world that need someone to step forward and bring them home.  Please pray for these children.  Please pray about what you can do to help one of these beautiful children.  We can't change the world, but perhaps we can change the world for one child.  

With love
Leslie

Some other happenings at our house

We've had a few things going on here the last couple of weeks that didn't involve sickness or diabetes.  (Not a lot, but a few.)  I thought I'd share some of them.

Isaiah lost a tooth.  It's been bothering him (didn't think he could eat certain foods with it being looose).  I was glad to see it come out.  The one beside it is also loose and should come out soon too.  I love the look of no front teeth!  So cute. 



A funny story on this loose tooth.  While it was loose, he really didn't like things touching including food and the toothbrush.  One night when Roger was brushing his teeth, Isaiah pointed to the loose tooth and said that this tooth didn't need to be brushed because he didn't use it anyway.  LOL  He cracks me up!

We've redeemed a few coupons from the children's coupon books.  Isaiah chose to cook with Mommy.  He was able to pick what he wanted to cook and he chose pizza!  A hit all the way around.  He did such a good job with all of it!



Here is one of the finished pizza - doesn't it look yummy?!  (It was!)



Just had to share a picture of this cutie all ready for the 4th of July!



As a special treat, Rebecca made us a festive and patriotic looking dessert.  It was yummy too!  I love that she initiates cooking treats for us!





This is not the best picture, but it is the best one I have.  Eliana fed herself lunch!  Mac and cheese!  She did it all herself.  :-)  What a sweet thing to watch her using her little fork and feeding herself.  I realize that this may not seem like a huge milestone, but it was a very sweet one for all of us.  She has been a little resistant to feeding herself and honestly sometimes it is just easier for one of us to help her.  I'm so proud of her for doing this and she seemed to enjoy it too!



Rebecca attended another drama camp.  This time the production was Get Smart.  Remember the old tv series?  It was very funny and the kids had a blast putting it on.  Rebecca was a "blond" - that wasn't.  LOL  She is on the right in brown. 



 This is the cast.



We all enjoyed the play - it was very funny and they did a super job!  Wish you all could have been there.  Afterwards there was a snack reception which provided one of those tough moments for Joshua.  We had planned ahead and brought snacks that we knew he could eat.  Well, of course he wanted to have some of what everyone else was having.  I can understand that.

He had 2 oreos and then some of what we brought.  I thought it was a good compromise.  He was bummed not to have a drink (even though we'd brought something for him).  I think it is just some of the loss he is dealing with.  I hope I don't make him sound like a whiner for the way he is acting because he really isn't.  It is a loss.  A loss of freedom to be able to eat what you want and when you want it.  It's a freedom that most of us take for granted.  I know I have.  I don't have to eat on a schedule and only certain types or amounts of foods.  I've tried to encourage him that it will get better as we are better able to regulate his numbers and going to a pump sometime in the future would help too.

Just a little of what is going on here.  I remain behind and have just accepted that perhaps that is to be life now and I'll just enjoy it where I am and do the best that I can each day.  I know God has a plan for me, for my days and for my time.  I'm trying to follow His lead as best I can.

Blessings

Leslie

Diabetes Clinic

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