Unexpected Delights

I love it when God surprises and delights my heart.  I don't know why I'm surprised by this as I know how I love to delight my children.  Its fun to meet a desire that they may not have even expressed or knew they wanted.  I know that God loves doing that for us too.  I wonder how often I may miss His efforts on my behalf. 

Just tonight as I was outside I noticed the sweet smell of honeysuckle and the sounds of birds in the trees.  It was fresh and clean and reminded me of being a child.  Isn't funny how so many memories are tied to smell?  

I was looking through some old blog posts tonight and seeing pictures of college visits 3 years ago as Christopher was trying to decide where to go.  Such a big decision.  One we prayed about often.  I also often prayed for his roommate.  Having worked in housing (and lived in the residence halls for my job), I remembered how important a good roommate could be!  I wanted that for Christopher.  

After posting Christopher's decision to go to State, I received an email from another homeschooling mom whose son was going to State.  We corresponded and then the guys started talking and they decided to room together.  I was excited about that!  We met in August and really hit it off.

That was the unexpected part.  It wasn't that I didn't expect to like his roommate's family - it was more that I hadn't even considered that God could have a plan for our families beyond the guys rooming together.  And when we enjoyed each other and liked hanging out - and then planned to get together again, it just struck me that when I prayed, God answered.  His answer though was so much bigger than anything that I asked for.  And it both surprised and delighted me.  Still does!

Joe's family was up visiting family locally and we were blessed to have them stay with us for several days!  We had a blast together!  Sure wish we lived closer together!  We mostly hung out around the house.  We talked, played games, played outside and just had fun.  

One day we went to Defy Gravity.  That place is so much fun!!!  As always we had a blast.  Its not an easy place in which to take photos, but I tried getting some of each of the kids heading into the ball pit.  Some doing flips and others just jumping in!

Thanks to Candace at http://www.mercyisnew.com for showing me how to do the collage photos!  So easy and fun at Picmonkey!  

We also celebrated Eliana's heart day!  Its been 6 years since our sweet girl had her heart surgery.  She is lively and happy and brings such sweetness to our days.  (She can also be a stinker too in case you think its all happy times.  LOL )

This was another time that God answered prayers in ways that were unexpected.  He showed me so much more of Himself than I  had known before.  He knew that my heart needed work and He sent a precious little girl to join our family to help mend my broken one.  I didn't see the blessings right away, but He was patient and taught me step by step (and continues to do so!).

We visited Moonberries for a sweet treat!  I love that they have gluten free options!  Its a safe and easy place that we all enjoy!

It was a gorgeous day and it was fun that Roger was able to join us too!

I'm thankful for family and friends that God has placed in my life.  He continues to teach me and bless me in ways sweet and unexpected.

Praying that you would see God's hand at work in sweet ways in your life too!
Leslie

Looking back ... a few things

I've been busy and keep meaning to figure things out on this new computer.  I think its going to take me a little while to get it sorted out so that I can do the things that I want to do on it.  Christopher did help me out with some things when he was here and I think I'm just going to need some lessons on it for awhile.  :-)

For those who use a Mac, I would love any tips or help you have to offer.  This is my first time on a Mac.  I'm especially interested in anything to do with photos.  Here is our  new computer.  I'm very excited about it and learning to use it!

We've had several medical appointments that I haven't shared about.  Eliana had her yearly cardiology appointment.  It was a long, long morning.  We went on Oct 31st and there were so many nice things set up at the hospital.  There were stations set up for the children and she visited one and got a new beanie baby which she loves.  She wasn't up for anything else.

She started fussing at vitals.  By the time we made it to the EKG, she was crying and screaming!  Next was the echo and she was inconsolable!!!  They pulled out all of their tricks - movie, bubbles, puppets, twirling lights - nothing helped.  I was even laying beside her on the bed and she just  cried and cried.  No reassurances helped.  : -(  It was hard.

Our last stop was to see the cardiologist.  We got into the exam room and as I was starting to get some things out for her.  She threw up.  Again.  And again.  Really did a number on the floor.  Ugh and yuck!  She thankfully mostly got the floor and not herself!  I cleaned it all up.  Didn't seem right to have someone else do it.  Though I did tell them after I cleaned it so that it could be mopped up again.  (She didn't get sick again.  Just so worked up from all of the crying.)

Anyway, as you can imagine by this time Eliana was less than thrilled to be touched by anyone!  Our Dr did manage a short exam and said that all looked the same.  She still has leaking at one of her valves (result of the surgery).  It isn't a problem at this point!  Thank you God.  The harder news is that we don't know if this will remain true.  It will depend on how her heart grows and how things around the valve are stretched.  She may need another heart surgery down the road.  I really didn't want to know that.  At this point though, I'm not going to worry about it as that won't help at all.  Just one more possibility of things to come - but hopefully not!

Joshua also had an appt at the diabetes clinic in the hospital.  His numbers have gotten bad and we are still working to try to get him in a better place.  We've made some adjustments that hopefully will help and give us more information on how his body is managing things.  Entering puberty though is already doing a number on him and from all that I hear, this will not change anytime soon.  So far, we are still seeing horrible highs and additionally lows in the middle of the night.  Still hoping and praying that we can him to a better and more stable place.

Also this week, I've watched friends walk through a very sad and tragic experience.  Its hard for me to even share this as words just seem inadequate.  Some sweet friends were excitedly waiting for the birth of their fourth child.  Their beautiful daughter was born late one evening on earth and soon after was born into heaven.  The grief and shock is unimaginable.  My heart just aches for them.

As I have been with them though, I see a strength and peace in the midst of the grief that I know comes from a deep faith in a God who loves them completely.  I'm encouraged by their faith while I grieve the pain and loss that this precious family is experiencing.

I wish I had words to make things better.  I know that all I can do is love on them - listen  - and be there for them.  Please pray for my friends as they walk this path which is not the joyful one for which they had been excitedly preparing.  Please pray for their family and friends.  Thank you.

With love
Leslie

Heart Day

I almost forgot heart day this year.  I guess that time is healing that memory.  It's a memory that will still bring tears to my eyes.  God used that time to teach me so much!

4 years ago on April 16, Eliana had open-heart surgery.  Four years ago, I had to hand her over and trust God.  He called me to trust Him and to know that He was good - regardless of the outcome of the surgery.  That may sound simple, but it was one of the hardest things I've ever done.  I wrestled with God until I could fully trust Him.  And fully know that He is good.

What a healing He did in her heart.  The surprise was the healing He did in mine.  I hadn't realized that I needed repair.  I certainly wouldn't have chosen the path He chose for me.  In fact, I embarked on the path kicking and screaming.  I wish I had known then what I know now.  I realize though that to know what I know now - I had to go through all of that.  The tears.  The fears.  The unknown.

So four years later, all that remains of that day is a scar ... and a lot of memories.

With all of the business of the play on the same day, I forgot.  But one of my precious friends didn't.  She walked through the trials with me then and celebrates with me now!  Thank you Rebecca!  I love you dear friend and your precious heart!

She came over after the play bearing these adorable (and yummy) creations!

 Aren't they cute?!  And perfect!!!  The frosting was even low-carb!!!

 Healed.  Whole.  This little girl has so much joy bursting out of her little heart!

 She lives life full on and leaves much laughter in her wake!

With a thankful heart for a merciful God who gives good gifts - even when we sometimes fail to recognize them at first.  For healing - in physical and emotional ways.  For friends - to walk through the highs and lows of life.  For family.

Praying you find much to be thankful for today!
Leslie

Kohl's Kids Who Care

A few months ago, one of my sweet friends (Melissa) told me about a contest for which she wanted to nominate Rebecca!  What a sweet thing!  As she got into the process, it became clear that the nomination needed to come from someone closer to Rebecca and so I completed the paperwork for her for the Kohl's Kids Who Care contest.

I shared about her work raising money for children with heart defects at Duke University.  She was touched by all that Eliana had gone through and wanted to do something to help others that needed it.  She began making bracelets and selling them.  To date, she has raised over $8000.  We are hoping to set up a store for her to be able to sell online, but it hasn't happened yet.  (One of the many things on my undone to do list.) 

Well, this week she received a large envelope from Kohs ... and she WON!  She won for the local store division and is now entered into the regional division.  Way to go Rebecca!  She was given a Kohl's gift card which she is pretty excited about!

I know that she didn't start this for the recognition.  Rebecca has an amazing heart for children.  I see this over and over again in the ways she interacts with children, in volunteering to help with the children at church, in her desire to help orphans, in her help with our family all in addition to helping children with heart defects.



I'm proud of you Rebecca!

Love

Mommy

PS  If you are interested in seeing some of her bracelets, I know I've posted about them on my blog in the past.  Hopefully the search function can help you find them.  Her ministry is called Wholehearted.

Update on the pump, heart day and more!

Sorry I'm slow in posting updates, but things have just been super busy.  This week looks to be more of the same.  We'll all be ready for a break by the week-end!

The Pump

Friday morning, Joshua got up and ready and had his "last shot" (at least on a regular basis).  We've been told not to get rid of the syringes as there may be times that they are needed for a back-up.  This was still a big milestone though.  The last shot. 

Joshua has gotten on average 4 shots a day for the last 10 months.  That is approximately 1200 shots that I've given my sweet boy.  I'm thankful that I can care for him at home, but I won't lie, it's been hard too.  It's hard being on call constantly.  It's hard being the only one that can take care of him.  We haven't been apart from each other for more than a couple of hours ... for close to a year.  I'm still thankful though.  And I do love being close to my children.  A few hours is usually plenty of time to do all that I need to do apart from them.  I love being a mom and though I hadn't planned on working on my "nursing degree" at the same time as caring for my young children, I'm thankful for all that I've learned.  I know God has used much of this to teach me, humble me and show me how to be grateful for so much more!!!

I'm rambling.  We headed to the hospital for our 9am appointment.  Roger met us there and we were seen in a small room with a rep from Animas (the maker of Joshua's pump).  We talked with her for almost 3 hours.  Learning about the pump and how it works.  Practicing putting in the cartridges, learning the various screens, putting in the inset (into Joshua).  He was getting restless (and hungry) and 2 hours into the session, he was finally hooked up to the pump.



He was very excited.  We found a snack.  I had brought some Nabs.  Typically, he has only 1/2 of the package for a snack so that he doesn't have to get an additional shot.  If he chooses a snack with more than 12 carbs, he is due for a shot.  Usually he will choose a lower carb snack and forego the shot.  (Can you blame him!)  Sometimes though, he will opt for the snack if it's a really good one.

We figured out his insulin needs using the calculations in the pump and he gave himself his first bolus (dose of insulin through the pump replacing a shot!)!  I love that it can give doses in small increments!  His first dose was .85 of a unit.  In the tiny syringes that I use, the markings are .5.  It's really hard when he needs a dose in between the markings!  This will be a really nice feature. 



Again, a very excited and proud little boy!  He was very excited to get home and show every how it works.  (Though it is very quiet and fast so there isn't too much to see.)

Heart Day

We planned a picnic in the park for dinner to celebrate Eliana's heart day - and also Joshua's getting a pump.  My sweet friend Rebecca  planned a lovely dinner and brought delicious food for all of us!  We tried to get a watermelon (too early) and found cantaloupe instead.  Rebecca (my daughter) made some heart "lollipop" cookies.



I love Rebecca's desire to do things special and her effort into making things for others .  It is a gift and she uses it well.  

 

It was a beautiful day.  We all thought that this was something we should do more often - and especially while the weather is nice!  I didn't get a lot of photos though, because soon after we arrived, I realized that I had forgotten the scale so I ran home to get it.  Then shortly after I got back, Joshua told me that his pump had an error message.  Ack!  I wasn't ready for testing quite so soon.  LOL

We were at a park close to home, and I had left not bringing all of our extra supplies.  Thankfully, there is a 1-800 number on the back of Joshua's pump with 24 hour assistance.  I called and she walked me through repriming the pump and getting him set again.  She also tried to troubleshoot to find out why we had gotten the error, but we couldn't find anything.  We then fixed plates, checked blood glucose and got another error!  The same one.  *sigh*  I went ahead and reprimed the pump and called again.  I have to say that the customer service at Animas was very good!  Helpful, kind, courteous - and they had the info from the last call so I didn't have to go over it all again.  She told me that if it happened again, I would need to take out the cannister (with the insulin) and put in a new one.  We made it through dinner just fine.

The kids liked having both cookies ... and cupcakes (made by my friend Rebecca).



Eliana was delighted with all of it.



We had fun enjoying her!



After we got home, we got the error message again.  I redid the cannister.  (I may not be getting all the names right, but too tired to look it up in the manual.)  I talked again to one of the reps that walked me through the steps (even though we had this in training) which was helpful.  We haven't had a problem since then.

So, how is it going on the pump?  So far, we like it.   It has given Joshua more freedom and control over things.  He sets up his bolus and gives it (though I like to look over the numbers just to make sure that I agree with the pump).  Only once have I disagreed with the pump and it was due to some unusually high numbers.  I didn't want him crashing and so gave a lower dose.  It worked out well.  

I like that he can eat more  - especially at snack times.  His numbers were very good for the first 24 hours.  They were a little higher after though - with an almost low thrown in for good measure.  Tomorrow we do or first site change.  It will be nice to get that done and under my belt so I feel more confidence on doing this too.  I know I can do it though and don't have nearly the fears I did when I was facing some of Eliana's changes (of her feeding tube). 

I have talked with an Animas rep each day since Friday.  She has called to check on us and to see how things are going.  I'll send her his numbers and we'll see if any tweaking needs to be done with his insulin.  Again, I'm very impressed with the service we are getting!

Overall, I have to say that we are pleased.  I think this will give all of us more freedom and flexibility.  I think it will give Joshua more confidence.  We still have a lot to learn, but as beginners, things are going well.

The Play

Rebecca is in a play this week.  It's Charlotte's Web.  If you are local, it is on Thursday, Friday and Saturday.  I can send more info if you are interested.  This week-end, they did some monologues in costume at some of the local libraries.  I loved hearing them!  The students did a great job figuring out their characters and giving them even more dimension.  I really enjoyed seeing them and am so glad Rebecca is having this experience.  It has been a lot of work, but a good experience.  I think the play will be wonderful and encourage you to come if you can!



The Race

After church today, Christopher ran in another race.  This was a 10K.  Its his 4th race this year.  He came in FIRST in his age bracket.  Way to go Christopher!  I'm proud of his hard work and his diligence.  The race today was a benefit for Habitat for Humanity.   It was a gorgeous day for a race.



This week is another crazy, busy week.  I'll try to post more on our co-op last week as I'm able to.  I'm trying to go into this week with low expectations of what we will accomplish.  I've planned simple meals, tried to catch up on laundry and kept plans for schooling at a minimum.  I want this to be a fun week and for us to enjoy the blessings - not be stressed about things "to do".  Praying that in the midst of the busy, that we will still listen to God's voice as He directs our plans and plans our paths.  I'm excited to see what the week will hold for us.

Blessings

Leslie

Updates and a look at our week ahead

Things are busy here - no change there.  Just thought I'd do a quick update. 

Yesterday, Eliana met with the cardiologist.  She was very displeased to be there.  She fussed at EVERYTHING!  Fussed about blood pressure (so they didn't even try), fussed about having her height and weight taken, fussed about having her temp taken.  You get the idea.  She was fine until someone else wanted to touch or look at her.  Her ped told me this was an appropriate developmental stage.  LOL

Her EKG went well and it all looked good.  Her physical exam was also good.  Based on her size and how she is doing (and maybe a little on how she was acting?), the cardiologist decided not to have an echocardiogram done.  He wasn't sure the sedation would be effective on her due to her being on the cusp size-wise and I don't think either of us thought she'd be still for an unsedated look.  I was fine with that and so we were able to go home a little early.

Joshua went with us and he wanted to play a little in the outside play area.  It was a beautiful and chilly day and he and Eliana had fun playing.  We hadn't ever stopped at this play spot before as it has always just been Eliana and I. 





I'm thankful for a good report on her heart. 

Someone had asked for more details on  Daniel as my earlier post was a little vague.  I talked with a nurse today trying to follow-up about our referral.  We haven't yet heard about a new appointment and she is hoping we'll hear something by Thursday.  We should be scheduled for the first available time slot.  The doctor's notes on Daniel are "optic nerve pallor".  Basically it means the color of his optic nerve is pale and not the color it should be.  It's in just one eye and is noted as "prominent".  I have to confess that a quick google search (I know, why do I do that?) does not make me feel good about any of these words.  I just want our little boy to be fine.  I really just want nothing new to be diagnosed here!  I don't want to worry (I know it does no good), but it can be hard.  I do best just trying not to think about it.  Some days it is just too much, kwim?

Our week ahead is a full one.  I'm coordinating a field trip for our FIAR group.  It's to a new place and I need to work on final details to get it all ready.  We'll be doing some outdoor survival with the older kids and other nature topics with the younger ones.  The weather is predicted to be beautiful so I'm looking forward to a fun outing.

Both of our boys are scheduled to play in the State Championship games of the Homeschool Football League this week-end!  Rebecca also has a soccer game in between the boys' games.  This will be the last of our "Sports Saturdays" for awhile.  (Rebecca has one more game, but it conflicts with our homeschool group's Family Event.)   

As of this evening, Joshua decided that he wanted to miss his last game so that he can participate in the Juvenile Diabetes Walk for the Cure which is the same time as his game.  This is something he was interested in doing and we have talked about since he was in the hospital with a new diagnosis.  The game though was not something he wanted to miss - until now.  So, we need to make plans to join in the walk.  I really don't know much about it and we have not done any fundraising either.  I think that we will just go and experience it.  I think it will be really nice for Joshua to meet someone else with diabetes. 

Rebecca and I have been invited to do a presentation at Duke next week about community service.  We'll share some of our story and lead a class in jewelry making to about 150 student athletes.  We'd love prayers as we prepare.  We are excited about this opportunity and want to make the most of it. 

We are also preparing for our homeschool group's largest event of the year coming up in about a week and a half.  My job is organizing and coordinating.  It is a really fun event which is done cooperatively.  This year our theme is The Gullywasher (a Five in a Row title).  I'm looking forward to it.

Well, it's late and I need to get some sleep as the morning always comes faster than I'd like for it too.  Thank you for your prayers and words of encouragment to me.  I appreciate it.  This has been a hard season of life and I'm in a struggle.  I feel as though I've been buffeted by challenges on and off for quite awhile.  I am trying to rest and trust - though it has not been easy.  I have never been as aware of the spiritual warfare going on around me as I am now.  I'm thankful that I know the One who has already won the battle.  

With love,

Leslie