Pretty in Pink

Just wanted to share a photo of our little cutie wearing a dress her Grandma made for her.  Isn't she adorable - and the dress is too!  Thanks Mom!
OK, this isn't the best one of the dress, but it is the best smiling one of Eliana.  I'm not sure why she was a little serious.   The next one is a close-up - serious, but still cute.  Yes, I"m a little biased.  LOL


I saw a link to a beautiful slide show today created by a Mom of a child with Down syndrome.  The words and the photos are so beautiful.  I wanted to share it here too.

A Life Worth Living

I love the life-affiming messages.  There are times when I read things about people with Down syndrome - how they are viewed by others - and it makes my heart sad.  I understand that many people are responding from fear.  I do understand that.  So many people with DS never make it into this world that many of us have not had the chance to even know someone with DS.  We don't always hear the positive stories and the encouragment.  I hope that by sharing out story that many will see the beauty of life lived with a child with Down syndrome.

Things have changed so much over the last several decades.  The care and early interventions are helping people with DS to have a much better quality of life.  As I read stories written by people who have a loved one with Down syndrome, I am consistently struck by the affirming words and the thankfulness that they have experienced life with a person with an extra chromosome. 

I'm not saying it isn't hard.  Honestly though, life is  hard.  Being a parent is a challenge.  Having a child with special needs just adds a new dimension to all of those things.  I also believe though that in addition to the challenges, that there come blessings!

 We are so thankful to have been blessed with our children.  We see each of our children as a precious gift from God.  Not a mistake.   A special gift given to us by the Creator of the Universe.  Isn't that an amazing thought?  We are given an incredible job to love and nurture and teach these precious little people.

I wouldn't be surprised if Eliana is the one that teaches us the most.  I know that God placed her with us for a reason.  It's not because we are any better able to handle difficulties, because we aren't.  It isn't because we are stronger or more capable - we aren't.  I'm not sure why we have been given this gift - but I am so very thankful for her!  I think that having her in our family has already taught us a lot about trusting God.  I think we'll learn more about slowing down, patience and unconditional love.  I know that I need to learn more about all of those things.  What a sweet privilege to have children to help me learn these lessons.

We are preparing for a pirate party tomorrow and I'll post pictures as soon as I'm able to.

Praises & Blessings:

*Eliana is sitting up by herself.  She is getting herself into a sitting position from being on her back.  She rolls over and then gets on her hands and knees.  Then she sticks one leg out straight and eventually sits and sticks the other one out.  It is really cute!  She still needs her hands to prop herself up, but she is so proud of herself.  Here is a photo.


*My precious children have been so helpful in getting things ready for the birthday party.  The oldest 4 have all contributed ideas and added in their own touches in order to make the party special.  I love that!  Rebecca made a treasure chest today - and it looks great!  Christopher has been working on lettering to add to the pirate ships and helping with planning some of the activities.  Joshua and Isaiah have come up with their own versions of games to play at the event tomorrow.  I love seeing them work together.

*Eliana had a great day eating today.  One of the bottles was 5 ounces!!!  This was a little over what we typically give her.  Just a little, but it's an improvment in the right direction!  All total she had 18.5 ounces orally today!  Yippee!!!  We need to see her taking most of her food orally for a couple of months before we can get rid of the g-tube.  I think she has some pain at the site and I look forward to the day when we don't need that tube any more.  I'm thankful that we have the option now as it has helped to keep her healthy and growing.   

Prayer requests:
*Good Health - Two of my children seem a little stuffy.  I'm not sure if it's  an allergic reaction or what.  I'm really hoping not to be getting something already.

*Sleep - I'm working on getting more, but still need to do a better job.  I took a nap for several hours yesterday and it was so wonderful!

*Patience for me.  Why is that always a lesson I need to work on?  I'm trying to slow down and not do so much.  It is hard sometimes when there are so many things I want to do.  I'm trying to make sure I start my day with God.  It really does make a difference when He comes first.  I know that and yet I don't always do it.  *sigh* 

I hope you each experience a week-end filled with His special blessings!

With love,
Leslie

Our Time at the Beach!

Well, I'm finally getting around to posting about our trip to the beach.  It was a fun week!  I love going in the fall when it isn't as hot or as crowded.  Catherine's family was staying about a mile from us and it was nice to see them during the week too. 

We left on a Saturday.  The men and children went ahead - Catherine, the babies and I, left last.  We tried to time it so we wouldn't have to stop, but did stop twice to feed them.  It was nice to have some time to just talk - without being interupted! 

The weather was beautiful despite the predictions of lots of rain.  We spent one day at the aquarium which happened to be the day that it rained. 

Here are some photos of our week. 

Eliana loved the beach.  She liked the sand and also the water.  She loved taking her little feet and moving them back and forth in the sand and/or the water.  She was happy to sit and play.  The children made her a small "tide pool" with a little seat which she loved being in. 

I'm sorry this photo is sideways.  I've tried changing it and it's changed in photobucket, but not sure why it won't change here. 

 Playing and riding on the boogie boards are a big hit with my children! 

 The pools formed at low tide are always a fun place to play.

 These three little guys just crack me up sometimes.  They have a blast whereever they go.

 Daniel insisted on holding Eliana for a photo.  This gave passersby quite a chuckle.  She didn't mind at all, though her hat kept falling in her face.  I couldn't get this one turned right either - sorry.

 Roger had to leave in the middle of the week for a business trip.  I was a little nervous about being in a different place without his help, but we all did fine.  We decided to go to the aquarium one day.  (I thought a field trip would be easier than going out on the beach.)  It ended up being a great day to be inside as it stormed.  We were given scavenger hunt forms to read and find various things.

There was a Pirate exhibit there which my children all enjoyed.  Well, probably the boys most of all.  If I can add any pictures of that outing, I will.  I was encouraged that we were able to be out and about for a good part of the day.  Eliana is a very good traveller.  She didn't eat all that great, but well enough.  I forgot one of the pump parts so I wasn't able to feed her through the tube anyway. 

I'm glad we had the opportunity to go to the beach.  It made me think that we should probably go more often.  Time for me to get some sleep now.  I'll try to add more tomorrow.

We are busy planning for a pirate birthday party here on Friday, so I'll have more to share soon.  It's been a very busy week thus far - and more to come!

Blessings,

Leslie

 

 

Our week at a glance

I've been very negligent in writing, but will try to get back into the swing of things.  Just had more pressing things to deal with at home I guess.

Sunday - This was Isaiah's 6th birthday.  How can he be 6?  Am I always going to wonder this on each of my children's birthdays?  Probably.  I have lots to share about our fun day with Isaiah - and some of the hilarious things that he said, but will do that in another post all about him (and hopefully with some pictures too).

Monday - A day at home!!!  Yippee!  We tried to do some cleaning (didn't get much done) and some schooling.  I've decided that in honor of the upcoming birthday party on Friday we will be doing a short unit on Pirates this week.  My boys are thrilled.  We started a new chapter book today, found the Caribbean Islands on a map and looked through an activity book to find fun things to do at their party.

Tuesday - Joshua has an eye appointment.  I'm really hoping he has improved.  He has been patching one eye, but has not seen improvement thus far.  Later in the day, Daniel and Isaiah have music classes.  I hope that Daniel will get into his class a little more this week.  I could hardly get him to participate last week.  I have seen him doing some of the htings at home though which is encouraging.  Rebecca was such an ideal music student - the boys have all been a little more reluctant.  LOL

Wednesday - Therapy day - both physical and feeding.  We missed physical last week because our therapist was sick.  Looking forward to seeing both of them this week.

Eliana has started trying some solid foods once a day.  She really doesn't know what to do with the food in her mouth and not a lot really goes in.  It's a start though.  She doesn't seem to mind it at all which is nice.

Thursday - Nothing!  Well, except prepare for a party and company the following day.

Friday - Pirate party for our birthday boys.  I'm trying for a low-key affair.  This is not the way we typically do birthdays.  We'll see how this goes.  ;-)  Too bad we don't have the 2 large ships we built a couple of years ago for a pirate party.  (Not really as I would NOT have wanted to store those!)

Saturday - Not much planned.  Rebecca has a soccer game.  We also have a Keepers of the Faith (club for girls) meeting on the topic of Wildflowers.  It is our first of the year and we are looking forward to it.

Sunday - We have been invited to attend a picnic of the group "Little Mended Hearts" by our cardiologist.  It sounds like a lot of fun and we are planning on going.

Blessings:

*A healthy family.  Eliana has been incredibly healthy since she has been born and I'm so very thankful for that.

*Wonderful family.  I have been blessed so very much with my family.

*Time for fun this week as we take time to study something that really excites the boys.

So many more things, but I need to go to sleep.  Sorry there isn't more to this.  It's late, but I wanted to give a peek into our week.  Thank you for your continued  prayers for our family.

With love,

Leslie

 

 

Our week at a glance - 9/16 - 9/22

Here's a look at our week.  It's a busy one after lounging at the beach all of last week.  I'm going to briefly recap the last 3 days and then look ahead at the rest of the week.

Sunday - Eliana is 9 months old!  Can it be?  She is getting to be such a big girl.  She loves getting up on her hands and knees.  She is working hard on crawling.  She is moving her hands forward and sometimes her knees too.  She is getting stronger and stronger.  I love watching her.  She is a sweet, sweet baby!!!

We go to church and then home.  I host a FIAR Mom's meeting for our homeschool support group.  I love the Moms in this group and enjoy any time we are able to have together.  It's a time that is both fun and encouraging.  I'm thankful for the support this group of friends is to me!  The boys arrive home from the beach late after having spent much of the day at Nascar Speedpark.  I'm glad they are safely here - and that they had a fun day of male bonding. 

Monday - We celebrate Joshua's 8th birthday!  It's a relaxing day of playing, fun and games.  Joshua had a list of about 20 things he wanted to do.  We didn't get to the whole list, but hopefully we can get to a few more later this week.

We also say good-bye to Catherine and her children as they head for home.  It was fun spending time with them at the beach and also at our home.

Tuesday - A slow morning.  It's hard to get back into the swing of things after having been off.  My goal is to get our Bible and unit studies done before I need to leave. 

Isaiah and Daniel have their first music classes today.  They take from a fabulous Kindermusik teacher.  We first went to one of her classes when Christopher was 2 - 12 years ago!  Isaiah was thrilled to be learning to play the dulcimer.  Daniel wasn't too sure about his class - a little hesitant about doing anything!  I'm hoping with some involvement at home that he'll begin to enjoy it more.  I'm in the class with him.  Rebecca played with Eliana during the class.

Wednesday - A day for therapy.  We have both feeding and physical therapy in one day.  I hope it won't be too much for Eliana.  I guess we'll find out.  I'm hoping she'll be able to nap in between them.   We haven't seen her feeding therapist for a month!  I'm looking forward to sharing some of Eliana's eating successes!  I love it when she has those stellar days like earlier this week.  The last couple of days have been about 12 ounces.  Not quite as exciting, but still a good day.  I'm guessing we'll start doing more with solid foods now. 

Thursday - Field trip with our FIAR group.  We are visiting a state forest to attend a couple of classes conducted by the park rangers.  I love these programs and am looking forward to the hike and also to seeing our friends.  We are having a large turn-out and it should be lots of fun!

Friday - Pondering a short field trip to the history museum to see an exhibit on the NC Bill of Rights which is here for just a week.  It would be a fun addition to all of the state history we've covered over the last 4 years.

Christopher will be doing science lab with a friend.  This is the 3rd year the boys have done labs together and it's been a good experience in learning and makes the course more fun for both of them I think.

Saturday - Not much planned - yet.  Rebecca will have a soccer game at some point.  Isaiah's birthday is the following day so we need to be planning some fun things for him to do!

Well, that's our week.  I haven't forgotten photos and stories from the beach.  More on that later this week.  I've uploaded some of my favorite photos and look forward to sharing them with you.

I hope your week is wonderful and that you are experiencing the love of God in a fresh and delightful way!  I am thankful and blessed in so many ways.  I'm thankful to have the opportunity to do some of the things I have missed doing over the last 9 months.  It feels good to be out again.

With love,

Leslie

A Sweet Birthday

I wrote most of this last night at the end of the day.  I'm going to leave it post-dated for Joshua's birthday. 

My sweet Joshua turned 8 years old today (Sept 17).  How can he be 8 years old already?  It seems like only yesterday that we welcomed him into our family.  What a wait to have him join us too!  I had wanted another baby for quite a long time.  Roger wasn't sure.  I felt convicted to be silent on this issue and let God handle it.  It was hard!  I  prayed often for God to give us the same desire - that we wouldn't be on either side of the issue each wanting something different.

After more than a year of waiting and hoping, one Saturday night Roger told me that he just didn't want any more children.  My heart was broken.  The next morning in church, children were being dedicated.  Since Roger was teaching a Sunday School class we attended separate services.  I thought it was a good thing as seeing all of those babies just made my heart ache with the thought of never having another one myself.  When Roger arrived home from church, he told me that God had changed his heart!  Oh there were more tears - of joy this time.  Shortly after this we found that we were expecting another baby.  As happy as I was to have another baby coming, it was sweet to know that God worked out all of the details.  He didn't need me to meddle or whine or work to get my way.  He did it in his way which was definitely the best way!!!

This child is the one that  think looks most like Roger.  He was also born on Roger's mom's birthday.  :-) 

I'm so thankful for Joshua.  What joy, laughter and delight he has brought to our family.  There are so many things that I love about our sweet son.  Here are some of them.

• He is tender and loving and always ready to give out a hug or a kiss.


• He has a great sense of humor and loves to laugh and have fun.


• He is willing to try new things.


• He has a sensitive heart.  (Not always as he is dealing with his siblings - LOL -  but on the whole I see this in him.) 


• He is creative and loves to make things.  He draws ALL the time and has a vivid imagination.  You should see his math book.  One side is a blank page - but not in his book.  It's covered with lots of art, letters and whatever creative thing he wanted to doodle at the moment.


• He is bright and inquisitive.  He asks a LOT of questions about a wide variety of things.  He also loves to read and learns much from the variety of topics on which he reads.


• He has a good attitude - most of the time - about whatever he is asked to do.

There are many more things, but I wanted to give you a peek at our boy.  He isn't perfect by any means, but is truly a special child.

One of the times when I experienced his sensitive heart was a day several years ago, when we were riding somewhere.  I'm not sure where we were going or why I only remember him being in the car with me.  He was 4 years old.  I had lost a baby the summer prior and this day was the "due date".  I was the only one that knew or remembered this date and I hadn't spoken about it to anyone.  As we were riding in the car, I was thinking/pondering, Joshua began talking about our baby in heaven.  We had talked about this baby many times before, especially after the loss, and I had assured him that our baby is in heaven.  That day he reassured me that our baby was with God - safe and loved.  It was a small but significant conversation to me.  I was encouraged that God used this little boy to bring comfort to my hearting heart.  I was amazed at his sensitivity.

Today we spent the day as we like to in our family - doing whatever the birthday person wants to do.  It's a fun tradition and Roger typically takes the day off from work to join us.  The birthday child also gets to pick out the foods for the day though thankfully we don't all have to join in.  Joshua wanted tator tots and ketchup for lunch - and nothing else.  So that's what he ate.  The rest of us had sandwiches.  We ate out at Golden Corral for dinner - a place with something for everyone.

Most of the day was spent  playing games - both inside and out.  Things like chess, apples to apples, capture the flag and more.  It was simple fun.  I'm so glad that this is something that is enjoyable to him.  Rebecca made a scavenger hunt for him to lead to his present.  She loves doing this and it's fun for the recipient too.

We haven't decided on the date/theme for the birthday party.  I know, we are running out of time.  Isaiah's birthday is in 6 days.  We have typically had a joint party for both boys and will plan to do that again this year.  They both want different themes which is hard.  I did that one year and it was crazy!  I don't really want to do it again.  So, until we figure out what we are doing - nothing has gotten planned. 

I have much to catch up on from last week!  I want to share pictures and some details on our trip.  I'll try to do that this week.  For now, it's about time for bed.  Good- night my sweet Joshua.  I have loved having you in our family.  We have been abundantly blessed by you!  I thank God for you every day.

With love,

Leslie

 

Rejoicing!

Hi Friends,

Just a quick note as I'm finishing up the last feed of the day - and the ONLY one in which we have used the pump!!!  Yippee!!!  She has done soooo well.  Some of the feeds have been done in two parts - taking a short break in the middle.  Her total taken by bottle today ...

18 ounces!

Way to go Eliana!!!  One of her feedings was in a busy, crowded consignment sale.  She didn't like the bottle cold and ate much better when it was warmed up. 

This last feed will probably be the hardest to get rid of as it typically occurs when she is asleep.  She sleeps well through the night - and always has - even when she was supposed to be eating during the night, she wanted to sleep.  It always felt odd to wake a baby to eat.

I'm guessing that perhaps we will start giving more attention to solid foods.  Tonight I was holding Eliana while eating ice cream.  She was really watching me and seemed interested in it.  She'll need to wait a bit longer for that treat though!  We have feeding therapy on Wed and haven't seen our therapist for almost a month.  Won't she be suprised to hear how great Eliana is doing?! 

More details and photos of our week at Myrtle Beach, SC coming up.  We had a great week!  The children ALL loved the beach.  We really ought to go more often.  ;-)

Love,

Leslie

Guess where we've been all week?

Hi All,

We've had a busy and fun week.  I'll write more later as I'm able to.  I didn't want to post that we were gone - while we were gone.  So here's a hint as to why there hasn't been much happening on my blog - or in response to much else from me. 

Here's a photo of our family - the only one of the week.  It's not the best, but it's what we've got.  :-)

Love,

Leslie

The $5000 Day

Hi Friends,

I wanted to update you on our day yesterday.  Sorry I wasn't able to write earlier - the last 24-48 hours have been very full!!! 

Here's a little bit about our afternoon.  We drove over to Duke in plenty of time for the event.  We were met there by Roger and some of our friends too.  As we waited for people to arrive, the children watched the fish in a large tank, played with some of the toys and enjoyed the kid-friendly environment.  Shortly after we got there, the gals from the Development office arrived.  They had brought the large check and refreshments.  We made introductions and spent some time talking while waiting for the doctors. 

Dr Carboni, Eliana's cardiologist, was there to receive the check along with the Head of Cardiology Dr. Rhodes.  Everyone was so nice and interested in talking with Rebecca about what she had done.  It was a little hard for Rebecca, but thankfully the whole affair was very low-key and comfortable.  She also warmed up as time went on and was even jokiheng with our cardiologist towards the end.

Here's a picture of Rebecca presenting the check to Dr Carboni and Dr Rhodes.  I'm in with Eliana (who they wanted in the photo). 

She did not make any formal speech - just answered questions and talked in small groups.  She was also able to set up some of her bracelets for sale on a table.  Several of the people there bought some.  One sweet moment was when a little girl came over to buy a bracelet.  She was there being treated for cancer.  Please take a moment to say a prayer for Megan - for God's healing touch to be on her body.  What an ordeal to have to go through this with a child!  I can only imagine the difficulty.

We had some refreshments afterwards - a hit with my younger boys.  LOL  We talked and laughed and just had a nice time.  I know that Rebecca enjoyed herself.  The large check is going to be displayed at Duke for awhile and then we will be given the check to keep. 

Here's a photo of our entire family on this big day!

Thank you for your prayers and good wishes.  Oh, there was no tv camera there.  Not sure what happened, but perhaps it was for the best so that Rebecca didn't feel so uncomfortable.  All in all, I'm proud of my little girl.  She was given a dream and then she followed through - something we can all learn from. 

Speaking of dreams, this song was one that I heard just a day before Rebecca made her donation.  I thought the message was a good one - and one that I need to remember for all of my children!

Mark Harris - Find Your Wings
It's only for a moment
You are mine to hold The plans that heavens has for you
Will all too soon unfold
So many different prayers I'll pray
For all that you might do
But most of all I want to know
You're walking in the truth
And if I never told you
I want you to know
That as I watch you grow

I pray that God would fill your heart with dreams
And that faith gives you the courage
To dare to do great things
I'm here for you whatever this life brings
So let my love give you roots
And help you find your wings

May passion be the wind
That leads you through your days
And may conviction keep your strong
Guide you on your way
May there be many moments
That make your life so sweet
Oh but more than memories

I pray that God would fill your heart with dreams
And that faith gives you the courage
To dare to do great things
I'm here for you whatever this life brings
So let my love give you roots
And help you find your wings

It's not living
If you don't reach for the sky
I'll have tears as you take off
But I'll cheer as you fly

I pray that God would fill your heart with dreams
And that faith gives you the courage
To dare to do great things
I'm here for you whatever this life brings
So let my love give you roots
And help you find your wings

Blessings,

Leslie

Exciting Day!

Hi All,

We are preparing for an exciting afternoon!  Rebecca will be presenting a check to Duke Children's Hospital today at 2pm.  We just found out this morning that a local news camera will be there!

If you are local, you will hopefully be able to see something tonight on the Durham channel (WTVD).  If I know more details about the time, I'll post it.

Please continue to pray for Rebecca.  She is excited and very nervous.  Please pray that the Lord would give her words to speak when she is too nervous to know what to say.  Pray that He would be glorified in all of this!

Thank you,

Leslie

A Fun Trip to "The Rocks"

Hi Friends,

Our first field trip was today - and it was a big success!  Thank you for those that were praying for us.  It was just nice to be out!  It was fun to see friends again and to feel like I have back a part of my life that I've missed.  I appreciate these times even more now that I've been without them for awhile.

I made a list last night of things to do this morning - from packing a picnic and things to take (lots of it for Eliana!).  This morning I tore this list in half and gave the lunch/picnic prep list to my oldest two and they did a fabulous job!  They completely took over all breakfast and lunch prep while I fed and got Eliana ready for the trip.  (Typically close to an hour to do this.)

We left a little later than I had hoped - but arrived on time at 9:45am.  The drive was a little more than 30 minutes and Eliana was a great traveller.  She was laughing several times during the trip at something Daniel was doing.  He likes being the one to help her and loves playing with her.  He often comments "My sister.  My sister."  when he is playing with her. 

Our outing today was to a place called "The Rocks".  The children saw a man panning for gold and he told them a little about the history of gold mining.  They were also able to "dry pan" a bag of dirt.  There were a LOT of stones and gems in the bags.  The children were thrilled.  Isaiah kept talking about "his treasure".  Joshua was so very careful about getting all of the gems - large and small.  Daniel liked taking his stones out, lining them up and seeing what he had. 

During it all, Eliana was a doll!  She rode in the sling and hardly made a peep.  When it was time to eat, she did a great job on her bottle.  She ate 4 ounces and I decided it wasn't worth hooking up the pump for just 20cc so we didn't.  It was nice not to have to do that!

After eating lunch and playing for awhile, we decided to go home.  We made a detour by a local dairy farm for some delicious ice cream.  I bought a video about the dairy farm.  It was fun to watch and learn about the operation.  They used to do tours when my oldest children were young, but stopped some years ago when the foot/hoof sickness was going around.

***I have a few photos from our day that I'll try to add in later. ***

There is more to our day, but it's late and I'm heading to bed.  We have a big day tomorrow!  If you think about it, please pray for Rebecca.  She is really nervous about the presentation tomorrow.  Several of her closest friends are coming to support her.  I want her to be able to enjoy this moment.  She has worked very hard for it and I don't want nervousness to overshadow the day. 

Thank you dear friends for your encouragment and support.

With love,

Leslie

Our week - Sept 3-7

Hi Friends,

I'm a little behind.  I'm finding my days are just busy - as I'm sure are yours - and there aren't enough hours in the day.  (Are there ever?!)  We are trying to keep up with schooling and it has added a lot to the day.  I need to find a balance with housework too.  *sigh*  That has never been one of those things that I love to do.  Not sure I know many people that do though!  I probably need an attitude adjustment here - as well as some training time for the children and I.  ;-)  There just aren't enough hours to get it ALL done.  I'm Ok with that - most days. 

Monday - We had a fun Labor Day!  It was nice to have Roger home from work.  We had friends come over for the the afternoon/evening and had a blast together.  Roger and the kids went swimming while my sweet friend and I did some scrapbooking.  It's been a long time since much of that got done and I thoroughly enjoyed the time!!!  I need to find a way to make that a regular part of my week?  or maybe month?  I do enjoy this creative outlet - plus it's really fun to look back at photos of people and events that you love.

We had ribs for dinner which were a hit.  The evening included games, a movie, ice cream and more scrapbooking.  Fun for all of us!

Tuesday - Eliana had an appointment with her ped today.  It was great to see her.  She is just so positive and encouraging!  We also saw the ped we had visited on Fri and who had been concerned about Eliana and was hoping that her advice had been good.  (It was.)  Her burn looks much better and the site isn't bleeding any more.  Thank you God!

The area still doesn't look great though and the ped thinks it will just be that way for the duration.  She recommended that I not continue with the silver nitrate.  Hopefully it won't get any worse.  It's hard to look at it as it just looks painful (and truthfully it looks yucky).  It doesn't seem to bother Eliana thankfully.

She is still doing well on the height/weight chart.  She is high on the "Down syndrome" chart which plots the slower/lower growth patterns.  She is at 80-85% there.  Don't remember where she is on the other chart.  She is still on the curve, though I don't remember where.

BIG PRAISE for today's feeding.  She ate almost 17 ounces!!!  Yippee!!!  This is the most to date since she was in heart failure.  Way to go Eliana!  She took just 6.5 ounces through the tube.  If she could continue like this, we could see an end in site for the tube!

Wed - A day at home!  Yippee!  I am really appreciating those.  We have physical therapy in the afternoon.  I'm not sure if I've seen much change in what she is doing.  She is trying to crawl though!  She moved one hand forward today and kind of scooches her knees forward too.  Cute!

Oh, the other thing she is doing more of is clapping.  She did this in imitation of my friend Rebecca the other day.  It was fun to see her doing that.  She did it so much at the ped office today that the ped asked if we did this a lot when Eliana did anything.  LOL  We don't though I bet we'll do more of it in the future.  This is something Eliana just enjoys doing.

Thur - Our first field trip with Eliana and the feeding tube  "stuff".  We (Eliana and I) have missed almost all of the field trips this year.  We went briefly to one that was close by and in between feedings.  We also went to one that was next door.  We have not ventured away from home as a group at all.

I need to find something to warm a bottle while we are out.  No luck yet in finding something that is battery-operated and not something that plugs into a car.  I'm hoping that someone makes this and that it isn't just a "good idea" in my mind.  LOL

I'm excited and a little nervous about being out and having to manage the pump and take care of Eliana - and the other children.  It's with our FIAR  homeschool group - a wonderful group of friends - so I know we'll be in good company.  I've really missed these outings and being with these friends and I am excited about starting back. 

Fri - This is a big day!!!  Rebecca will be presenting a check for over $5000 to Duke Children's Hospital.  I'm so excited for my girl - and a little nervous for her too.  We don't know the details yet of how things will be done.  I'm hoping to find out more as I think this will help Rebecca not to be so nervous.  She has done a wonderful thing and I'm really proud of her.

We are exploring the possibility of having a local tv station cover this.  Pray that if this is God's will that it would work out.  I would think a "positive" story would be a nice thing to cover. 

Prayer requests:

*Healing around Eliana's button site.

*Continued improvement in Eliana's feeding.

*That our field trip would be fun and educational for all of us!

*A friend's son Tyler is having his heart surgery on Mon Sept 10.  Would you join me in praying for a successful surgery?  Prayers for his mama and those that love Tyler would be appreciated too.

Will update as I can.  I need to post some photos. 

Thank you friends for caring for us.

With love,

Leslie

PS  I've been asked about how to buy bracelets.  If you will just send me an email, we can arrange this for you.  :-) 

She Did It!!!

It has taken me awhile to get to this post, but I'm thrilled to make this announcement!

Three cheers for Rebecca - she has reached her goal!  Wholehearted sales are currently at

$5083

In just 6 months time, a goal that seemed lofty and unreachable, has been attained.  It has taken a lot of work, help from friends and lots and lots of time!  We have been encouraged by others as the story of a little girl's vision touched many hearts. 

It was something we spent many hours doing together as a family in our bedroom while Eliana was in heart failure.  Friends would gather in our home to help out at various times too! 

I talked with a gal in the Development office yesterday.  The date for presenting the money is set - next Friday September 7th.  Rebecca will be presenting a check to Duke Hospital to be used to for heart babies to get the help that they need.  At this point she has not specified the use of the money - other than to help heart babies.  The cardiologist had suggested that we might want to "earmark" the money for something specific so that she would know where her money went.  We just haven't had any ideas what that might be.  If any of you have any suggestions for us - please let us know.  

For those of you that may have missed this story, go to this entry on my blog to read more about it.

http://www.homeschoolblogger.com/LeslieNelsen/308596/

They are planning to have one of those extra-large, oversized checks made for Rebecca to present.  She is excited about that.  She is also a little nervous about having to speak.  Please pray that she would have a calm spirit and just be able to share her heart.  We aren't sure yet exactly what type of comments they might want from her.  We are expecting Eliana's cardiologist to be there.  He has been wonderful!  I'm not sure who else will be in attendance.  I do know her whole family will be there - cheering her on!

Thank you to many of you that have encouraged Rebecca (and me) as she has started a non-profit business at the age of 11.  It has been quite a learning experience for all of us. 

I'm so thankful for her tender heart.  It's sweet for me to see her using her gifts and being willing to work hard to help others.  I learn a lot from my children.  Rebecca has been an incredible example to me of compassion and effort - doing something to make a difference in the lives of others.

If any of you are still interested in bracelets, she isn't planning to stop her business.  I'm not sure what her goals/ideas are from this point forward.  We'll have to wait and see.

Thank you for sharing in our excitment!

ETA:  One small note on Eliana.  Her burn seems to be healing well - but she is having bleeding around the site.  Please continue to pray for her healing and no infection.  It's a little alarming to see the blood.  She does not seem to be in any pain thankfully.

With love,

Leslie