A Belated Happy Birthday to my sweet Isaiah!!!

Like so many things in my life these days ... I'm behind.  LOL  My sweet Isaiah turned 6 a couple of weeks ago.  He is a funny and delightful.  I can't wait to share some of my thoughts on memories on this special little boy.

When he was born I thought he was one of the most beautiful babies I'd ever seen.  (Well, one of the top 4 at that point.  *grin* )  He has the most gorgeous eyes - big brown soulful eyes with long dark lashes.  You could get lost in his eyes. 

My precious baby became a little more difficult as he hit the toddler/preschool years.  He was defiant in ways my other children had not been.  Some days he was just not fun to be around.  As I prayed about how to deal with my child, God convicted me that there were times that I treated him like he was difficult.  Ouch!  He was just living up to my expectations.  The gentle suggestion was to change my expectations in addition to the way that I viewed this precious gift.  As I did that, I was amazed at how he responded. 

He has become much more affectionate and loving.  Oh, he is still strong-willed.  He gets mad easily and if he is hurt or embarrassed he doesn't want anyone around.  I sometimes want to throw my arms around him and make things alright, but have had to learn to let him work things out in his own way. 

Isaiah is confident, imaginative, dramatic, interesting and outgoing.  For Christmas this year, he proclaimed loudly that this was the "best Christmas ever".  I felt guilt as I had thought that it was anything but.  I had dreamed of the peaceful time of having a new baby in the house at Christmas, but the chaos of a stay in NICU and a medically fragile child with a variety of health issues and struggles with feeding sure didn't make things seem great to me.  I was thankful for his fresh perspective on everything!  On Christmas morning, he announced loudly to everyone that he had a story to tell.  (I wish that I'd thought to film this.)  For those that don't know him, Isaiah has an incredibly deep voice - and has since he was a toddler.  I wasn't sure what he was going to share.  With the incredible imagination in this small boy's body - there was really no telling.  Once all eyes were on him, he proceeded to share the most beautiful version of the Christmas story.  It was the highlight of the day for me. 

Isaiah is one of those people that never meets a stranger.  Even solicitors that show up at our door can get an earful.  I remember going one of our history trips and watching Isaiah chat with one of the reenactors for a good 15 or 20 minutes - asking all sorts of questions.  He is quite curious and loves to talk with others.  Given his imagination sometimes the conversations are really good!

Just before his birthday we had a conversation about gifts.  I'm fairly certain this (gifts) is his love language.  He loves his little sister and wanted her to be included in the birthday planning - and he presented his idea to me.

Isaiah:  Mom, Eliana wants to buy me a birthday present and I know how she can do it. 

Me:  Is that right?  Tell me more.

Isaiah:  You can take Eliana to the store and whatever she points at is what she wants to give me.

Me:  (Thinking hard here to see if I can stump him) OK.  What if she points to a pink and white polka-dotted umbrella?  (It's the best girl thing I could come up with off the cuff.)

Isaiah:  That would be fine.

Me:  What if she picks a doll? 

Isaiah:  Well, that would probably be her idea for Rebecca and she could point to something else for me.

I had to laugh.  Isaiah has a very quick wit and his timing is quite good for one so young. 

For our children's birthdays we let them choose the foods and some activities.  Rebecca planned a wonderful scavenger hunt with a pirate theme for our pirate-loving boy.  (Like Isaiah she also has gifts as one of her love languages and loves to go all out on planning something special.)  The hunt ended in our treehouse/swing set which Christopher, Joshua and Rebecca had turned into a pirate ship complete with mast and sail.  Rebecca's present to him was there as well - a pirate outfit with hat, boots, sword and even a parrot to sit on his shoulder.  It was all really sweet - and he loved it!

The pirate ship in our backyard.

A close-up of the pirates.

In the late afternoon, we picked up McDonalds (Isaiah's choice) and took it to a local park for a picnic.  After playing we headed to Coldstone for ice cream (free on your birthday if you join their birthday club - we had 2 boys getting it free!).  Friends met us and it was a sweet ending to the day.

My precious Isaiah, I am so thankful for you - for the joy and laughter that you bring to my days, for the questions you ask that cause me to seek and for the ways you have pointed me to God.  I am thankful for the ways that you stretch me and teach me and love me.  I am so very glad that I am your Mom.  I love you!

Mommy

 

A Day at the Fair

We spent Monday at the State Fair.  Roger took the day off from work.  (I love that not only is he able - but he is willing - to take time off to do some special things with his family.)  We chose Monday as it was supposed to be one of the least crowded days.  Weather-wise it was gorgeous!!!  We couldn't have asked for better.

We got up earlier and started getting ready.  Friends were coming over to go with us so we were working on a little bit of a time schedule.  Well, Eliana wouldn't eat.  I tried and tried - but you know,  you can't make someone eat!  (Believe me, I have been trying that for awhile and it just can't be done.)  I would try and then go do something to give her a break.  Finally, everyone was ready, she had taken less than half of her bottle and I told them to go on without me. 

We figured it would be best to take 2 cars in case I needed to leave early.  We hadn't been gone from home all day before and I wasn't sure how Eliana would do.  When she started the day eating so poorly I wanted to have the option to come home in case she wouldn't eat while we were at the fair.

I debated then about what to do.  Should I just use the pump - it would help us to get to the fair and not miss out on family time.  I really didn't want to stop our almost 2 weeks time span of *no tube*.  I also needed to have the bottle cleaned since I only have two.  (She uses a special - and very expensive - bottle.  We have two.  I should probably order more of them, but until now it just hasn't been an issue.)  I wanted to have 2 clean bottles at the fair for the next two feedings.

Well, after trying for about an hour I decided to go ahead and tube her.  I hope this won't be a big setback.  I really have no idea how much of a stickler they are about the length of time.  I know that we'll be in the midst of sick and germ season if she does manage to go 2-3 months without the tube.  I wonder if that will cause them to be more hesitant about removing it too?  I guess we'll find out.  We see our ped on Friday and it will be good to touch base with her.

Eliana and I arrived at the fair about 30 minutes behind everyone else.  The kids were working on a fair-wide scavenger hunt.  It was really neat - but unfortunately they didn't finish it.  (Though they made a good effort.)  We visited so many things - from a ranger station and Smokey the Bear to various gardens.  Rebecca was so excited to go see the things that they had entered.  I had told them not to expect any ribbons in hopes that they wouldn't be disappointed.

We headed first to the building that had handcrafts and hobbies.  Rebecca wanted to run to see her items.  She went ahead and then came back thrilled that she had gotten a ribbon - 4th place.  She was so excited and it was fun to see the joy on her face. 

We went by to see my quilt next.  No ribbon - but I didn't expect one!  The girls thought I'd be disappointed, but really I wasn't!  I was honestly out of my league in this competition.  (We did see a smocked dress and thought my Mom needs to enter one of hers next year!)

When we visited the artwork, Isaiah was excited to tell me that he and Joshua had both gotten an orange ribbon.  I was stumped as to what it could be.  I didn't remember an orange ribbon.  He was very pleased and it turned out to be a participation ribbon.  That was a nice thing to give to all of the children.

 

Eliana had her first feeding during our lunch break.  We held off eating a little bit in hopes that it would work for her to eat while we were all seated.  She did great!  She took all or most of the bottle then.  Later in the afternoon when it was time for her next feeding, I went back to the same somewhat quiet spot and she again ate well.  She was able to sleep some during the day either in the stroller or in the sling.  Such a little sweetheart!

The children were working on another scavenger hunt - and the prize was a really cool t-shirt from the State Fair.  I even did it and got one too!  It is fun that there are so many neat hands-on educational things to do.  There is definitely more than a day's worth of activities there.

Boys picking fruits and veggies for their baskets. 

The baskets were weighed and each boy paid for his crop.  The money was good in a store for a goodie bag with NC treats in it (apple, peanuts, pencil, etc.)

We ate lots of fun fair food from roasted corn to funnel cakes, chili fries to ice cream and more.  I think this is by far Christopher's favorite part of the fair.  Not surprising to any of you that know him.  He sampled more foods than rode on rides.  LOL  He did like one though - the bumper cars.

We saw animals and fruits and veggies.  My little boys were fascinated by a bee display.  They asked lots of questions and loved looking at the real bees (behind glass).   We saw the largest pumpkin EVER at the NC Fair.  It weighed over 1100 pounds!  It was huge! 

We had one very scary time when we were separated from Isaiah for a few minutes.  Oh my heart raced and I had to try to still my mind.  Thankfully he stopped when he realized he wasn't with us any longer.  Thank you God for protecting our little boy.

Of course, the rides were fun too.  The children went on bungee cord jumping (I thought that looked like fun), roller coasters, twirling rides and fun houses.  I couldn't believe that Daniel wanted to ride them!!!

He clearly loved the rides!

We did many more things during the day, probably more than anyone is interested in.  LOL  Overall it was a fun day.  Eliana did really well and we stayed ALL day long!  We were late enough to enjoy the fireworks display.  I enjoyed being out again with my family.

 

Thank you God for a slice of fun with family and friends.  It was a sweet day with lots of neat memories.

Blessings,

Leslie

Fair Entries

We got all of our things ready - working right up to the deadline to get things framed and to finish quilting.  *sigh*  I thought I'd planned ahead.  LOL

When we arrived at the fair, they just let us drive in!  I was stunned.  No permission, no questions - just drive right in.  So as I was manuevering the van around construction equipment, vendors stands and lots of people working - I had to marvel at all that goes on behind the scenes of a fair.  It was cool - well most of it was cool.  Getting face to face with an 18-wheeler turning around in a tight space wan't the highlight.

After driving around and finally parking, we walked into the first building where I dropped off my quilt.  The gals in there were so nice and all loved playing with Eliana.  The children were each carrying the items they had made and looked so cute - especially the little boys holding their pictures.  I wish I had taken a picture of that! 

The next building was for artwork.  My oldest 4 all had entries in this catagory.  When we walked in a lot of the artwork was hanging and I was surprised to see how much they had gotten done!  We had to search to find someone working in there and then were told we were a day too late!  My face just fell.  She told me I should have read it more carefully.  I thought I did.  I didn't know that there were different deadlines depending on the department.  I apologized and just said I didn't know.  I didn't try to make her change her mind or even explain why we were a day late - other than to say I didn't realize that the date was different.  My sweet friend that was with me started getting tears in her eyes.  I know that touched the woman with whom we were talking.  Perhaps too seeing my two little boys holding onto the pictures so proudly and just listening to what she had to say.

She asked us to wait a minute.  While she was gone I started trying to explain to my children that we were too late for them to enter.  She came back with her supervisor who asked about out pictures.  She also asked if we were homeschoolers.  Then she agreed to take the pictures.  Wasn't that nice!  If we didn't realize it then, the first woman told us that last year's supervisor would never have allowed this breaking of the rules.  I appreciated her grace.  She certainly didn't have to do it.  It was completely my fault.  I was feeling so badly that I had made the deadline for my item and not for most of their items.  We were all so very thankful for this sweet gal's heart. 

Our last stop was a distance away where we went to enter Rebecca's bracelet and crosstitch.  My friend had made beautiful ornaments to enter.  Original sculpey ornaments for a Jesse tree.  She was told she had entered the wrong catagory.  They would not allow her to change it.  Similar scenario as before with a much different reaction.  My dear friend handled it with grace, but we were so sad for all of her hard work to prepare these ornaments.  Hopefully she will try again next year - she does exquisite work!

Here are some photos of the things we entered.

 I just love this picture - though I know it's hard to see in the photo.  It's one that Isaiah drew when we were studying the book Mike Mulligan and His Steam Shovel.  I love the hands with all of the fingers sticking out and the smile on the steam shovel's face.

Joshua drew this picture.  He pays such attention to detail in his drawings.  I love the row of pirate heads at the bottom of the picture.  (Looks like the main pirate is having a little meeting.)  He used a lot of art techniques that he had learned from shading and perspective to cross-hatching.  He wasn't pleased that I had chosen this picture, but I  think it's great!

Hmmm ... you can't really see the detail in this picture either.  I can hardly see any grass or sky at all.  I'm not sure if you can see more.  I'm guessing that these pictures aren't the best as we were in a hurry to take them.  This is a picture Rebecca drew of herself playing soccer.  She loves drawing people - little people.  She has a very distinct and very cute style too!

A  photo of a photo seems silly, but I'll replace it if I can find the original.  This is Christopher's entry.  He took the photo last fall on a trip to the Outer Banks.  It's a beautiful picture.  He enjoys taking photos of landscapes and animals - and not people.

The photo of Rebecca's bracelet didn't turn out at all.  It's a pink beaded bracelet with charms - several different types of heart charms.  Very pretty.

This is Rebecca's cross-stitch.  She made this last spring as part of her Keepers of the Faith project.  (A club for girls in which they learn various skills and earn badges.)  She worked very hard on this and did a beautiful job.

This is my quilt.  It's an "I Spy" quilt.  Each square represents a different children's picture book from the curriculum we use.  These go with Before Five in a Row.  It's machine pieced and hand stitched.  I'm not sure it will mean much to anyone else and I'm not really sure why I entered it.  I think for us, it represents a lot of fun we've had learning with and reading books over the years.  This quilt is for Eliana.

We are planning to go to the fair early next week and check all of the entries.  It will be fun this year to see things that we and our friends have entered.

That's all for now.

Blessings,

Leslie

 

Eliana updates ...

Uggg... I just typed a huge thing and lost it all!  I'll probably  need to do this in parts as it was long and I'm not sure I have time to write it all again.

Eliana is doing well.  She is such a delight to our whole family.  We think she is adorable - even when she cries.  You can see it coming as she starts to stick out her little bottom lip - and I do mean stick it out.  It's cute!  She did this on the day she was born.  My children got a kick out of it and called her "Little Miss Pouty-Face". 

Feeding -  Eliana is still TUBE FREE!!!  It has been over a week now!  Yippee!!!  I still cry tears of joy when I write or say that - tube-free!  It's been a long road.  A road I expected to be one of joy and peace as we welcomed a new little one to our family.  The road has had moments of joy - but also many more times of trial and difficulty than imagined.  Through it all, Eliana has been a delight!  We are so very glad she is part of our family!  I am thankful too for the many things that I've learned from Eliana.  Things I've learned about God, our family and my friends.  Things I've learned about love and peace and joy.  Things I've learned about patience and trials and prayer.  I wouldn't trade these lessons - and wouldn't for a moment trade the joy that Eliana brings to our lives.  God was so good to give us this precious girl.  He is good all the time.

Back to eating.  When Eliana did well for a couple of days, I thought that now was the time to try to go without the tube.  She needs to go for several months of not using the tube in order to have it taken out.  Each day without using it just seems one step closer to have it out! 

There were times when things seemed so far away.  I truly believe that the NG tube caused some of her feeding problems.  Now, I don't regret having it - we truly had no choice.  Thankfully the problems don't appear to be long-term. 

I told her feeding therapist today what I was doing.  I commented that I had just decided to give it a try - going without.  She told me that I needed to keep tabs on her to make sure that she was gaining enough weight (she really hasn't gained much if any - but hasn't lost either).  I also need to make sure that she isn't dehydrated (number of wet diapers) or constipated.  She shows no signs of either of these things.  She is a little plump and very content.  And did I mention cute?!

Physical Therapy was also today.  And she cried and cried.  I wonder if this is typical?  Anyone?  It's hard work - and she had not had a long enough nap.  This happened last week too.  I hate seeing her get so upset, but know that she needs to learn these skills.  We are working on crawling (she is scooting backwards and needs to learn going forwards) and bearing weight on her legs (she does not want to do this!).

I asked when she was going to measure her development on the scale again (AIMS is what I think it is called).  She took it out and began marking and counting points.  She gave her 3 "freebies" - things she doesn't think Eliana is going to do but rather skip over.  One was pivoting while on her tummy.  She doesn't like to be one her stomach unless she is sleeping.  I just don't think she will do this.  Another was "lounging".  This is lying on your side while propped up on one arm or elbow.  She is not fond of this at all.  I can't remember the third thing.

Anyway, when she counted the points, Eliana is still ON the developmental scale!!!  This is for typically developing children and it is exciting to see her gaining and learning at such a good rate - especially considering all she has been through.  She is in the bottom percentile and is the equivalent to an 8mo old.  (Eliana is 9mo and 3 weeks.)  She seems to be motivated to move and learn on her own.   I am thankful for all that she is learning. 

Fun things - Here are some things that Eliana likes to do.

*Bouncing - she loves it when you are holding her or sitting on edge of the bed.  She seems like a little daredevil.  (Dare I even say that?!)

*Clapping - She loves to clap her little hands and grin hugely while doing it.

*No - She shakes her head no often.  There are times when someone has asked a question and she does it right on cue - and it cracks us up.  She likes that too - laughter is a big hit with her.

*Hands -  She is still fascinated with her own hands.  Sometimes she will catch a glimpse of one of them and just stop and stare at it.  She will turn it slowly to look at it from different angles as if admiring the neat thing she has.  She also likes other people's hands.

*Sitting up - She moves from laying down to sitting all the time.  She is also learning how to get out of the sitting position too.  This is currently her favorite way to be though.  It gives her a lot more options for what she can see and do.

That's all for now.  Still more to post on the FIAR, Isaiah's birthday and the pirate party.  Oh, and the list of things "I didn't know".  Just not enough hours in the day.

Thanks for your prayers, encouragment and love dear friends. 

Leslie 

 

What was I Thinking?

Oh, I know what I was thinking.  "This will be fun."  "This will be a neat learning experience."  "We can manage this."  Well, most of that is true - at least the first two sentences.  The last one - hahaha.  We've entered some things into the State Fair this year.  The first entry was Rebecca's cross-stitch.  It was framed and finished - an easy choice.  The next entry was one of Rebecca's bracelets.  Again an easy choice.

This is where I went astray.  I thought if Rebecca entered then the other children should be given a chance.  So, tonight I've been framing projects that the boys have done.  Drawings by Joshua and Isaiah and a photograph by Christopher.  The really crazy part is that I decided to enter a quilt.  Why did I do that?!  I'm not an expert!  I was getting in the spirit of having the children enter and entered something too.  *sigh*  Mine isn't finished.  It's close, but I'll need to work on it tomorrow.  I also need to work on descriptive tags to put on all of the projects. 

Did I mention that tomorrow is the day that everything is due to the State Fair?  I'll try to take some photos and post them tomorrow.  For now, it's time to go to bed.

More updates tomorrow.  One quick one though - Eliana is STILL TUBE-FREE!!!  I've decided that we need to go for it and work hard to get off the feeding tube.  Some days are better than others, but we are moving in the right direction!  Praise God!!!

 

Our Night at the Gala and Auction

We had such a nice evening at the Gala and Auction!  I wish more people could have been there.  I never knew about these events before.  It's probably one of the many things that go on in this city of which I'm not aware.

This benefit was celebrating the completion of a home.  When it is sold all of the profits will go to Duke Children's Hospital.  Many of the contractors offer supplies at cost so that they are able to give much more to Duke.  Last year, in another local neighborhood, the sale of the home raised $90,000 for Duke! 

Rebecca, Eliana and I went together to the event.  I wish all of us could have attended - maybe another time.  When we arrived we were greeted by Robyn our contact with the Development office.  She has been so gracious and encouraging.  I've enjoyed talking with her.  We also met some other Development people as well as folks with the HomeLife Communities.  Everyone was very nice.  I was surprised too when folks had told me that they had read my blog and heard some of our story already.  I'm not sure why that always surprises me, but it does.  I am humbled that people care so much about our little girl.  

We talked a bit and then got some of the really yummy food.  There were some introductions, explanations of why we were there and then it was my turn to speak.  I had only a few minutes and spoke a little about Eliana's story.  It was hard for me to know what to talk about and what to leave out.  I feel comfortable with what I did share - though I wish that I could have shared sooo much more!  I tried to focus on Duke and what our experience there had meant to me.

I started by talking about how a year ago there was a lot I didn't know - including the gender of the baby I was carrying.  We didn't realize how much more we had to learn than just whether we were having a boy or a girl.  I talked about not knowing much about Duke - and how thankful we have been to have a top-notch Children's hospital in our backyard.  I talked about the difficulties of having a child that was medically fragile and having to see a cardiologist the day after we were released from the NICU.  I talked some about feeding difficulties, heart failure and the blessing of a mended heart.  I spoke of the blessing of our children - of how God has supported us.  I also shared about Rebecca's bracelet ministry with Wholehearted. 

Some of it is a blur.  I probably should have "practiced" a little more about what I would say as it was hard to condense it to a few minutes.  I hope though that they heard my heart.  One sweet gal told me afterward with tears close to her eyes how much it meant to hear about what we had been through.  That was a blessing as this sweet sister in Christ shared some of her heart with me.

I was thinking of things on the way over and was surprised that how thinking back brought tears so easily as I remembered this path we have been on.  There is more I want to share and I'm working on writing a piece that has come from what I shared tonight.  I want to share more on the things I didn't know before we had Eliana.

I did speak to a local news reporter.  She asked some questions and took my number in case she had further questions.  I hope she does as I'd like the opportunity to talk again.  We'll see.

There was also an auction going on in two houses.  Artwork, sports memorabilia, towels, and several completely furnished and decorated rooms!  They were beautiful.  Rebecca and I were a little late getting into the houses before the auction closed.  We rushed through looking at things and I wish we had been able to spend a little more time.  We did bid on one thing, but got outbid at the last moment.  Rebecca placed the bid and was very disappointed not to win.  I tried to encourage her that it was alright, but she thought she had messed it up as she didn't understand how it worked.  She did nothing wrong and I tried to share that.  We'll both know more the next time.  I hope we'll be able to go to another of these events in the future.

I need to run as Eliana is calling me.  We have one last feeding - hopefully she will take all of it and we can have a 2nd day with NO TUBE!!!  I can't explain what an incredible joy this is to me! 

Thankful today for the opportunity to meet others, to share a little of our story and of the many blessings God has poured into our lives.

With love,

Leslie

PS  I don't have photos, but am hoping to get some.

 

 

 

Tears of Rejoicing!

I sit here with tears of joy running down my face.    Today a prayer was answered.  A prayer that has been prayed for many days, weeks and even months.

Today Eliana ate completely from her bottle!!! 
NO TUBE at all!!!  Oh, just typing those words causes me to well up again.  It's been a long time coming.  I know though that for many others, it is an even longer road.  I know too that we aren't finished with this path.  Oh, but I'm thankful for this bright spot.  This moment of hope is so sweet.  This day when my little girl has been able to eat.

For the first time in 8 months, Eliana has eaten without the aid of a tube.  I counted the months wondering had it really been that long.  She went into the hospital at the beginning of February to get the NG tube placed.  That seems like such a long time ago.  Almost a lifetime ago when my little girl was so very tiny and in heart failure - and eating was just more than she could manage.  Her doctor likened it to running a marathon in terms of the energy that it required.   

With a repaired heart she has sooo much more energy.  Today she ate almost 22 ounces!  That is a little shy of her goal as I don't tube feed her when she has eaten close to the goal amount in a feeding. 

We hit one other new milestone today.  I finished her feedings just before midnight!  That hasn't happened since she was born!  I'm playing around some with the timing of her feedings in hopes of finding a schedule that will work better for allowing her to eat - and allowing both of us to sleep. 

I'm so thankful for this accomplishment!  I rocked Eliana as she slept after her last feeding and just cried tears of joy.  I spent time praising and thanking God that I was able to feed my little girl - without a tube.  I praised Him for his goodness. 

As I reflected though, I thought about His goodness and how it is not dependant on circumstances.  He is good ALL the time.  He was good in the midst of Eliana's heart failure.  He was good in the midst of my struggles to nurse her.  He was good in the midst of all of the many trials with her feeding.  He was good as I struggled with sleep deprivation, fear and sadness.  Even when the answers and timing have not been what I wanted, I was reminded then and am reminded now that He is good.  It is easy to think He is good when things are going well, and I've been challenged often (and especially during the most difficult of times) to remember and praise Him for being good, especially when things are hard.  I remember before facing Eliana's open heart surgery having to come to terms with the fact that even if the outcome of the surgery was not good, that God would still be good. 

Tonight I am thankful for the many times God has showered his goodness on us!

Tomorrow (Wed), I have a neat opportunity.  I am going to be speaking briefly at a Gala and Auction to benefit Duke Children's Hospital.  I will be sharing Eliana's story.  I'm not sure exactly what I'll be sharing yet and am praying for guidance on that.  It will be hard to be brief about something that has seemed anything but brief.  (I'm sure I can do that though!)  I've been told that there will be media there that *may* be interested in interviewing me.  I'm excited about this opportunity - and a little nervous too.  I enjoy talking to people though and think that this will be a chance to share some of the blessings that have come during our short time with Eliana.

The gal that has arranged all of this is the one that set up everything for Rebecca's donation.  She is really nice and has given me lots of helpful information even down to what to wear.  (As a stay at home mom, my wardrobe of "nice" clothes isn't all that extensive so it helped to know that what I wore to Rebecca's event is just right for this one too.) 

I would love your prayers that I would share whatever God lays on my heart.  Our experience with Duke has been very positive and I'm thankful for the care we have received.  I hope to share also about God's goodness through all of this. 

I'm still planning to write on more things - and post more pictures of Isaiah's birthday, the pirate party for the boys and the Triangle Mended Little Hearts picnic we attended on Sunday. 

With a heart filled with praise,

Leslie

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