This week has been busy -  and I'll post on the project that has kept us occupied and not on the computer so much this week (hopefully tomorrow).  In the morning, the children and I are going on a field trip to the Nasher Art Museum.  Afterwards, we are planning to picnic at Duke Gardens if the weather permits.  This is our last outing of the year with our homeschool group and we are looking forward to the time together. 

My sweet family did a wonderful job in making me feel special on Mother's Day. 

Starting off the day was breakfast in bed.  Rebecca made breakfast and brought it to me.  The little boys wanted to eat up in my room with me.  LOL  Guess we all like a little something special.  (I do have a photo of Rebecca and I with the breakfast - but really don't want to post that one!)

When I came downstairs, I walked on a "carpeted" stair to a special chair.  There was a chalk board with Happy Mother's Day written in beautiful font.  The table was decorated with a variety of flowers, cards and LOTS of chocolate.

Each of the children took turns giving me a card that they had made and a gift.  Daniel gave me gummy worms.  (Despite Rebecca urging him to get something else at the store.  This is one of his favorites and what he wanted to give.)  Isaiah gave me Dove bars - a chocolate he remembered seeing me eat when I was scrapbooking with friends.  He also gave me a tex mex snack mix.  Yum!  Joshua gave me mint chocolate m&ms - he knows I like mint.  Rebecca gave me Ghiradelli squares - the size is just right (not to mention the taste.  Roger gave me several large chocolate bars.  Did I mention that there was a LOT of chocolate?!  Oh, and balloons too!

I love the cards they made!  So sweet to see their handwriting and artistic efforts.  :-)  Rebecca also made me jewelry.  I'll try to find a pic to post.  It's a set of matching black earrings, a bracelet and a necklace.  All are really beautiful!  Christopher made a new screen saver for me with pictures of some of my favorite people.  He did forget to put himself in there though!

The day was pretty low-key.  Rebecca made me a lunch and Roger cooked kabobs for dinner.  It was wonderful not having to spend any time cooking.  (It's not my favorite activity at all!)

I am blessed beyond measure and most thankful for the gifts God has given me!

With love,

 Leslie

Yesterday I was struggling with emotions - feeling grief again at our loss, as several around me were celebrating and announcing a new pregnancy.  It's not that I'm not happy for them, just still sad for us.  I would be halfway through the pregnancy by now - feeling better, showing and enjoying little kicks.   I don't always do a good job in "dealing" with my emotions.  I think I'd rather just stuff them away and try to move on - rather than ponder.  (I've never been one to do well in answering those reflective types of questions. either.)  I'm having some help though and for that I'm grateful. 

A dear friend sent a book to help me process my grief.  (Thank you Christine!!!)  It is entitled Grieving the Child I Never Knew.  It does help me to spend time thinking through and making sure I am dealing with things and don't become a walking emotional time bomb.  (Can anyone relate to that?)  Even so, at times I want to skim and not dig in.  I'm not sure why I do this - protection? denial?  fear?  I know I like to put off thinking about things. 

I received another blessing a few weeks ago, and I'm not sure if I shared about it.  Rebecca  made me a small scrapbook about our "little one".  It is filled with special things and notes in her own sweet handwriting.  It has an ultrasound picture, a poem she wrote for our baby, a picture of the rose bush we planted in memory and more.  It's really a very loving keepsake.  I am again amazed at the heart of this young woman, my daughter.  This was hard for her and yet she is finding a way to deal with her grief and also bless me at the same time.   

As I was thinking yesterday, my 6yo asked me if I knew what was coming in two days.  He also asked me if this was my favorite day.  I had to honestly answer "no" because of all that I see around me in regards to this day.  While it is meant to be a day for celebration, it is also filled with a variety of emotions for so many people. 

• HAPPINESS - for those blessed with family they love - mothers and children
• GRIEF - for those that have lost their mother or a child
• GUILT - for those who have not lived up to the expectations - their own or someone elses
• JOY - for those celebrating a life within
• ANGER - for those who feel pushed into something they don't want; a relationship that drains them or a person that they will never be able to please
• FEAR or PAIN - for those in a difficult place with someone that they love
• PEACE - for those who find contentment right where they are; living just where God has them

Life is hard.  God is good.  I'm thankful that even in the midst of the hard things, that I have something ... someone good to cling to!  I am blessed in so many ways. 

I am blessed to have a wonderful Mom that I wish we could spend the day with too!  I love you Mom!  I am thankful for the example you are and have been to me on how to be a mom and wife.  I'm thankful for the interests and talents you have shared with me.  I'm thankful for the love of God that you showed me at a very early age.  I am thankful that you have given me wings, let me make my own choices and mistakes and yet support me through it all.  I am so thankful for you Mom!  I love you!

I am thankful to be a Mom as well!  I can't imagine anything that has taught me more than being a mom.  When I was growing up I never imagined that I would have a large family.  (I still don't really feel like six is all that large - though it certainly seems to be to most people.)  Once I had a child though, I knew that this was a blessing I would be thrilled to have more of!  I love having children.  I love being a Mom!  Children are a gift from God, they are His reward.

For my dear friends that are hurting, I'm praying for you.  I am thankful for the ones of you that are also praying for me.  I'm praying today for any that read this, that you would find peace and love in the arms of the One who loves you!  Crawl up into your Daddy God's lap and let Him love on you, give you peace and just delight in you.  

God is good.

With love,

Leslie 

I wanted to share something exciting with you.  I should have shared it weeks ago, but like the previous post mentioned - I'm behind.  :-)

I've been invited to speak at a luncheon that is part of the Duke Children's Classic.  Read more about it here.    This is a huge event for the hospital involving a golf tournement.  On Sat, there is a luncheon for the wives and friends of the golfers.  I'm not the keynote, but will be sharing/speaking at the lunch. 

I don't know the details yet, but expect that they will just want to hear "my story".  It can be hard to condense the last year into a story - but it can be done.  It is certainly easier to share at this point than it was a year ago.  We've come a long way.  As hard as those early days were - I'm thankful for them.  I'm thankful for the difficult road as it opened my eyes and my heart to so many things.  Things I might never have seen if it had not been for Eliana.  I remember early on someone telling me that I'd have a "story to tell" and me thinking that I didn't want a story to tell!  (Yes, I was fussing about it.  I just wanted a boring, uneventful life at that point.)  God's way is definitely best. 

My eyes see beauty in a whole new way.  My heart understands pain, suffering, fear and peace in depths I hadn't experienced before.  My mind knows that facts will never be stronger than faith, love and hope.  I know with all of my heart that we have been entrusted with a special gift - a blessing sent to us from God.  ALL children are a gift from God.  A blessing.  An incredible blessing.

Rebecca has also been asked to participate.  They have asked her to make a bracelet for every woman in attendance - 100 to 125 of them!  All of them in pink and/or orange which are their theme colors.  Well, they are pink as we have had a very hard time finding any orange beads.  We are also having trouble finding the metal heart beads - her signature bead.  Our local store no longer carries them.  If you find them, we would love to know where so that we can get more.  ETA:  Just last night we found some at a different craft store and bought all that they had! 

Rebecca has been working so very hard.  She has made over 100 bracelets in the last 4 weeks!  That's a lot of bracelets and many, many hours.  She has found that listening to books on tape is a great way to pass the time.  I have joined her in making them as have some of her friends, which is a fun way to work.  (Her friends bracelets aren't counted in her total above.)  Most of the time though, it's just Rebecca working.  I'm so proud of her effort and diligence!

They will also have "boutiques" with items for the attendees to purchase.  Rebecca will have one of these too.  She is planning on making a variety of things to add to her collection once she meets her goal of the pink bracelets.  This was a big order and I'm proud of her and the hard work she has put into it so far.  Many hours a week my sweet girl has devoted.  She really is amazing, isn't she?  Her goal for the year is to reach $10,000.  Last year, I might have doubted, this year, I know she can do it!

If any of you want more information on Rebecca's bracelet ministry, I've added a few links to my sidebar to explain what she has done.  If you are interested in purchasing bracelets, please email me.

If you feel led to pray, I would love prayers that I would speak words that would encourage, challenge and inspire people.  I want to speak the words that God has for me.  I'm excited about this opportunity and thankful for it as well. 

My girls - pretty special each in their own way.

Love,

Leslie

I doubt it.  There are so many things I want to do - and never enough time to do them.  Some things have been waiting for far too long!!!  Like thank you notes.  *blush*  I have typically been so good about doing this, but have certainly dropped the ball over the last year. 

Maybe making a list will help.  Or just serve as a reminder.  Here a list of some things I want or need to do.

*Sort clothes - pull out clothes that are too small (pass down) or stained (toss).  Figure out needs for summer clothing for everyone.  I've started on this, but it is not a small task. 

*Declutter - talking about not a small task.  LOL  The attic and garage and playroom need soooo much work.  I need to just set aside 15 min a day and try to tackle it.  I did some on the garage yesterday - and Roger took a load of things to the dump.  It's a little bit of progress.

*Reading - I have a stack of books I feel like I *need* to read - from homeschooling high school to learning about various motor skills improvements with Down syndrome.

*Scrapbooking - the job that is never caught up!  It is fun though. 

*Making activity boxes for my younger children - I want to do some developmental learning boxes for them.  Things that will be fun and also helpful.  Daniel loves having these to do during our school time.  I think Eliana would benefit from some more directed play as well.

*Researching/praying/planning for the next school year - I need to figure out new curriculum for my oldest two.  Our conference is in a few more weeks and I like to do most of my buying here if possible.  I want to support the vendors that attend and I like being able to look at things there.

*Chores - I've really slacked up a lot on these since ... well, you know.  LOL  I need to work on new charts.  The children are all really helpful - but some more than others and dividing things up would help all of us.  I need to do more training of the younger boys as well. 

If this sounds like fun to anyone - please feel free to come on over as I would love company as I tackle some of these projects.

Our day today was so much fun!  We had a field day with our homeschool group.  I wish I could share pics - but most of mine didn't turn out.  I'll try to post some later if any worked.  I'm not sure what is going on with my camera - it isn't that old.  (4.5 years) 

We split the children by ages and had a variety of games going on.  Some of them included 3-legged race, egg and spoon race, long jump, football throw, backwards race, kickball, sack race and more.  All of my children LOVED this day!  These are things that we don't often do as homeschoolers and it was fun to take time to do this with our friends.  My children are already asking about doing this next year.  I think it will be a fun new tradition for our group. 

This week-end, Roger and Joshua are going on a Civil War trip with a UNC tour group.  This is Joshua's first trip of this type and he is so excited.  Roger is the host and Joshua is looking forward to being his assistant - helping and serving the others on the tour.  He asked if I thought he would do a good job -  I assured him that he would be great in this role!  Christopher has been on several of these trips and it's neat that now Joshua gets a turn. 

When Roger first talked with Joshua, he wasn't sure if the topic would be interesting to him.  Joshua replied, "What kid isn't interested in the Civil War?  I've always wanted to learn more about iron-clads.".  His older brother has been a Civil War buff for a long time, so he has had plenty of exposure.  I think having time with his Dad will be pretty special too. 

The rest of us have a football game this week-end and a picnic.  The picnic is sponsored by our local Down syndrome group.  I think it will be a fun time to meet and connect with some others.  I'm really hoping it doesn't rain so that we can attend. 

I have more things I want to post - esp pictures.  Maybe I should list those too so I can get around to doing it.  ;-) 

Praying that the rest of you week is filled with laughter, love and joy.  Praying that you would know how precious it is to be loved deeply by the One who made you.  Praying that you would know His peace, purpose and passion as you walk through your day.

With love,

Leslie

Thank you for your words of advice - and encouragment.  Those early days can seem long - and messy - but thankfully don't appear to be long-lasting!  :-)

Daniel is doing a great job!!!  He is thrilled with his big boy pants - and even likes to show them off.  The first couple of days seemed long -  lots of reminders and some accidents too.  Though by now - he is doing a great job!  He is still needing some reminders, though also goes on his own.  Whew!!!  This will be the 5th one trained - can I say he is trained yet?  Well, we are close. 

Blessings,

Leslie

I took a few photos on our "Heart Day" that I wanted to share.  (I like the term Heart Day that my sweet friend Karen shared with me.  She is a mom of a heart baby too and was a great encouragment to me through all of this!!!)

We had a couple of therapies that day.  In the morning we had speech therapy.  Eliana is doing more and more babbling.  She is also trying to repeat things we say to her and it's just so cute!  I love seeing her learn.  In this photo she is pointing (she uses her thumb!) to a pic of an animal.  There was a recording of the sound which she tried to imitate (sheep was the one she could do). 

Eliana also had physical therapy in the afternoon and a meeting with our case manager then too.  She is practicing her walking in this tiny little walker.  She took one step holding on to it.  She is using it to bend/squat which is good.  (She was just falling down with her legs straight.)

At some point during the day, Rebecca decided that our princess needed to wear a crown.  She looked adorable and we are all taken with her.  Her Daddy thinks she is the sweetest!

For dinner I wanted to do something special.  We decided a picnic in the park was a good choice.  Some dear friends met us there and brought a present for Eliana.  Doesn't she look pleased?  It's a snowglobe with a heart in the center and pink glitter around it.  The words on the bottom say ... "Live, love, laugh".  What a sweet and perfect gift!!!  Thank you!

We stayed out late just relaxing, playing and having fun.  It was a sweet day - much different from a year ago.  I hope we can use this day to celebrate, give thanks and praise God for His good work.

Words that strike fear - or maybe just dread - into the hearts of many moms!  Or is it just me???  Uggghhh!  Of all the things I've had to teach my children, this is one of them that I dread most.  *sigh*  I've done it four times already, you would think it would be no big deal by this point, huh?

I'm thinking my next two may give me the biggest challenge yet - and I would LOVE to be proved wrong!!!

We are late in training Daniel.  I had planned to train him after "the baby" was born.  Well, our sweet baby, Eliana, came with more to deal with and potty training took a back burner for quite a long time.  It was just too much.  We did try briefly for awhile, but he was not interested so we gave up.  Then, we began dealing with sensory issues with Daniel and his therapist recommended waiting.  We did.  Well, I've waited long enough now - the boy needs to be trained.

We started yesterday and it's going ... OK.  Not great.  He hasn't yet "figured it out".  Ugh.  I really don't like doing this, but it needs to be done. 

Anyone really good at this?  I'd be willing to hire out?!  :-D  Advice?  Prayers?

More later as I've uploaded more pics of things I've been promising to share.

Blessings,
Leslie

***Photos included that may be difficult for children if you have some watching/reading. ***

One year ago, our sweet Eliana's heart was repaired!  We praise God for His faithfulness in walking us through this valley.  We are thankful for our family and the many friends he placed in our lives that helped to ease the pain and difficulty with prayers, words of encouragment and acts of service. 

One year ago, so many people were praying for our little girl.  Some of my friends were fasting while they prayed.  Friends on the FIAR board (my homeschool community) set up an around the clock prayer calendar for Eliana.  I was humbled and blessed immensely that people cared so much for our little girl.

One year ago, we slept through our alarm!  How could that happen on such an important day?  We rushed to get ready and get to the hospital so very early. 

One year ago, we handed our little girl over to two very kind men (the anesthesiologists).  I remember watching one of them cradle her in his arms as he gently carried her down the corridor to the surgical room.  The sun was coming up in the window in front of them and they looked so relaxed and calm.

One year ago, I had to hand over more than my daughter.  I had wrestled with God and felt that I had to come to the point that I was truly willing to hand her over to Him.  The story of Abraham and Isaac become more to me than just a story.  I knew that God had given us a gift - yet she was still His child.  Ours to care for and to love on for an undisclosed amount of time.  "Yes God," I said, "She is yours.  I do so want more time with her."

One year ago, I held onto a little bow waiting for news of her surgery.  I had expected to be broken and devasted, but God met me there and gave me His peace that passes understanding.

One year ago, Roger and I, along with some dear friends sat waiting, praying, talking ... and just waiting.  Anxious to hear news and yet fearful to hear it as well.

One year ago, I so wanted to hold my little girl.  Waiting to hear the news was hard.  What a joy to meet with her surgeon and to hear that all had gone well.  When we were finally allowed to see her - I remember running to her room.  I should have waited, but could think of nothing but seeing our baby. 

One year ago, our baby's heart was made whole.  It was hard to see Eliana with so many tubes and wires.  Hard to find a place to just love on her.

One year ago, I continued to see God answer prayers for Eliana's care.  I watched her heal rapidly and was so very thankful to see her smile again.

One year ago, the end of a very difficult and dark time in our lives was marked by a healed heart.  This didn't mean that things suddenly become easy or without pain or trial.  Not at all.  I know that those who have experienced something similar though will understand these words ... It's so much better on the other side of surgery!

Today as I reflect and remember I am overwhelmed with thankfulness.  I am thankful that Eliana has had no complications from surgery.  I am thankful that she is growing, learning and progressing in so many ways.  I am thankful for a beautiful little girl that has taught me so much about trust, faith, love and acceptance.  I am thankful for a loving God who truly does give good gifts!

With love,

Leslie

PS  I may write more later, but wanted to share something on this special day.

We were facing something that was so big. It had been looming over us for months and the day was almost upon us. It was the day prior to Eliana’s open heart surgery.

Has it been a year already? In some ways the time has gone quickly, but in others it seems like so much longer. This has been the hardest time of my life – and yet it has also been filled with some of the sweetest times of my life as well. There were many, many times when I wondered if life would ever be good again as I was so overwhelmed. I wondered if I could ever be thankful for this path. I am grateful to say – YES! I am so thankful to have walked this path with our precious girl. I couldn’t answer any other way because any other path would be one without our beloved Eliana. Her very name is filled with such meaning ...

Eliana Joy – My God has answered with joy

I just read my blog entry from a year ago.  Here's a link if you want to see it.

Blog from April 15 2007

Not surprisingly, it made me start to cry. We’ve come a long way. We saw our ped today – she is such a gem. I reminded her that tomorrow was 1 year. She asked if I were going to look at pictures. I told her yes, I was planning to remind myself of all that I could from that day. I often do this with very significant events (like the birth of a child).  I think that though it will be hard to see the pictures, that it is good to remember. It’s good to give thanks for the many, many blessings.

I will write more tomorrow as I reflect on that day. The day of my daughter’s healed heart.

I’m not sure what we will do as a family, though I’d like to do something special to celebrate this day. I want my children to remember the blessings – not just of this day – but of this time in our lives.

With love,

Leslie

The little heart one under Eliana's photo at the top of my blog?  I put that on there last year as we were counting down the days until her heart surgery.  Open heart surgery.  Oh, how those words were hard for a mommy to hear!  It's hard to explain how difficult it was to wait ... and wonder ... and pray. 

I have been blessed abundantly by friends and family that prayed and encouraged me.  Just one year ago today Eliana had her pre-surgery day - tests, questions, forms, and meeting the surgeon.  It was a full day.  I should go back and read my blog entry from that day.  Here is the link if anyone else wants to see it.

The night before pre-op

Pre-op Day

I'm so very thankful to be on this side of surgery.  So very thankful that all went well and that Eliana has recovered beautifully.  I've often said that this is not something that I would have chosen, but I'm thankful for the lessons I've learned and would not want to give that back. 

Thank you God for healing my little girl's heart.

I'll try to post more tomorrow on our week-end.  We had a fabulous trip and experienced a lot of neat things.  Eliana was a super traveller too.

Blessings,

Leslie

I know - it's been almost a month.  I did want to post and share some pics though and better late than never, right?!

We visited our dear friends in Virginia for the week-end.  We have shared many years of Easter activities together (egg hunts, and other fun times).  Since we are no longer able to pop right next door, this was a fun extended time of being together.

We made resurrction rolls.  This is a great way to explain the resurrection to young children and is an activity we've been doing since Christopher was a very young boy.  You take a marshmellow to represent Jesus.  You dip the marshmellow in butter and then cinnamon sugar to represent the oils and spices that were put on the body for burial.  Then you take a crescent roll and wrap it around the marshmellow.  This represents the tomb in which Jesus was buried.  You then bake them.  (Make sure your seals are really good on the crescent rolls or it will leak.)  When you take them out, the "tomb" will be puffy and inside it is empty - obviously representing the empty tomb.  It's a neat visual for young children - and a tasty treat as well.

We also had an egg hunt.  The tall grass made it a fun challenge.  When Daniel had finished finding his eggs, we hid them again as the search is most of the fun.  Well, the eating what's inside them is fun too.

I just liked this photo of Christopher and Eliana.

This is a photo of us all dressed up after church.  It was bright and I know I'm squinting.  It isn't the best photo - but it's the only one we have.

I like this photo of the kids better. 

Eliana is wearing a dress that my Mom made - for Rebecca.  I love seeing her wear things that her older sister has also worn.  We've waited a long time for a girl to wear this again.  We have quite a few beautiful dresses made by Nana for Eliana to wear. 

We also made cookies and decorated them.  It is fun watching them display their own ideas and creativity in making designs. 

Daniel

Isaiah

Joshua

Rebecca

We had a wonderful time with our sweet friends.  I'm thankful that they are close enough to visit - though still wish they were right next door. 

Tomorrow the children and I are leaving for an overnight field trip.  It's our first since Eliana was born.  I'm excited and a little nervous.  We'd love prayers for travel safety, sleep (it's a lot to sleep in one room) and good weather would be nice too.  I'll share more when I return - as well as photos from our last field trip when we went flying!

Blessing to all of you!

Leslie

It has been awhile since I posted a picture.  This one of the kids and I at one of our FIAR group field trips in March.  We were at Harris County Lake Park.  The older children had a class at Shearon Harris Nuclear power plant.  The fun thing is that it was taught by a former homeschool mom (that even used our curriculum)!  Everyone learned a lot and found the hands-on exhibits fun and interesting. 

While the older kids were at the power plant, the younger children had ranger led classes at a nearby park.  These were also experiential including games, facts about animals and going on a short hike. 

It was a cold, but beautiful day.  We stayed for a picnic lunch and the day warmed up.  The kids played on the playground equipment, exploring the park and played kickball on a large field.  I loved having a large span of time to just relax and enjoy my friends and family.  Our family stayed with another family until dinner time.  It was a fun and relaxing day for all of us. 

I've been pondering things this week.  Some of it heavy.  I was personally struggling with the loss of our little one.  Reminders seemed to hit on a day when I was emotional anyway (ladies know what I mean).  It's only been a month and the physical reminder was one that just served to emphasize the loss.  (I hope this makes sense as I'm trying to be discreet.)  I just need more time to mourn the loss of this little one that I loved even though we've never met.

I've also cried for other families this week as they mourn the loss of a child that they have known and loved.  Three different families with a sick child who last their battle this week.  Prayer requests for this child for health and healing that weren't answered in the ways we had hoped.  It's heartbreaking to think of losing a child.  One little boy named Paxten who lost his fight with cancer, a little 5yo girl who had heart surgery with complications and a little boy named Noah with Down syndrome who died from pneumonia after having a bone marrow transplant.  I'm thankful that these sweet children are in the arms of Jesus, but I grieve with the families that are mourning. 

In the midst of pain I am constantly reminded that God is good.  The Lord gives and the Lord takes away - blessed be the name of the Lord.  He never promised that this life would be easy.  He has promised to always be with us.  I'm so thankful He is there.   

In counting our blessings here, Eliana is doing great!  Her site is healing beautifully - well, it's not leaking.  It does look good - but funny.  I'm guessing it will eventually look like a second misplaced belly button.  LOL  We'll see.  I'm thrilled though that she is no longer leaking!!!  She is continuing to learn and grow and just delight us all.

We've had some sickness here - though thankfully not bad.  Fevers, sore throat, lethargy - no bodily fluids involved in this sickness!  Daniel seemed to have the worst of it Sat night and Sun (yesterday), but was bouncing around full blast today.  Rebecca came down with it last night and is still feeling poorly.

We would love prayers for healing - and that this not have to be passed through the entire family.  I would also love for you to personally join me in praying for these precious families that have lost their beloved child.

Blessings,

Leslie

Praise God!  The first 4 days were rough - lots and lots of leakage.  At times I wondered if I should be doing something more or different.  She didn't seem dehydrated though and so we just plugged along doing the best we could.

Yesterday (Tues) was the first day I could see any improvement.  Today has also been much better!  The leakage is much smaller and is contained by the pads.  Also her site is looking better.  There is a strange "black string-looking thing" coming from the site.  I haven't had the nerve to pull on it until tonight and it is definitely "stuck".  I'm not sure what it is and am hoping that maybe it will fall off.  If not, I'll call our ped.

So, the surgeon was right.  It would close on it's own - with no intervention at all.  I'm thankful for that.  I'm thankful Eliana did not have to have another surgery.  I'm so very thankful that the tube is OUT!!!  Yippee!!!  Now, I'm feeling like I can celebrate and enjoy. 

The bandages are irritating her skin.  I'm treating it with mylanta.  (Per the surgeon's instructions.)  I'm not sure how much longer we'll need to keep things bandaged.  We'll just play it by ear and do our best. 

Thank you for your prayers and notes of encouragment.  I'm thankful for you dear friends that have walked with us through our ups and downs. 

This note is short.  We've had a busy day.  In between trying to do school, we had 2 therapies this morning - sensory/feeding therapy for Daniel and then feeding therapy for Eliana.  In the afternoon, physical therapy for Eliana.  So many things to remember and try to do.  It really goes against my "go with the flow" nature in terms of my days.  I'm learning though and working to get better.  Maybe in truth it's just laziness and I'm learning to be more disciplined.  That is a good thing too. 

Tomorrow we are expecting a visit from my parents.  We are all very excited to see them!  In the morning before they arrive we are scheduled to go on a field trip - flying!  It is weather dependant so we'll see if we are able to go up.

I need to get some sleep now.  Thank you again for your prayers.  I'll try to post some Easter pics soon.

Blessings,

Leslie

Hi Friends,

Thank you for your prayers for our sweet girl.  She is doing pretty well overall.  She is quite a tough and happy little girl!  She has decided over the last two days that she really likes crawling up the stairs!

Saturday  was a rough sleep night for her so I gave more tylenol yesterday and it really seemed to help.  She doesn't seem to be in a lot of pain except during changes of her bandages.  Perhaps though she just doesn't complain and it's good for me to give her a little tylenol just to help her out. 

In terms of leaking, yesterday was a better day.  I was really thinking maybe we had turned the corner until her evening feeding and she was soaked.  It looked like I had just poured the formula all over her little shirt and body.  When I changed her at this time I also noticed that Eliana is bleeding some around her site.  Not a lot, but it's never a comforting thing to remove bandages and see blood.

We would love your continued prayers for healing and wisdom for us to know if the conditions would warrant her being seen again by the surgeon. 

Sorry this is short, but it's morning and I need to tend to some sweet children.

Love,

Leslie

of being free of the g-tube have been ... WET!  LOL  Seriously, wet.  I'm not surprised since she has a hole in her tummy.  It wasn't so bad the first 5 or 6 hours because some of the cauterized parts I think blocked some of the flow.  That isn't the case any more however.  Yesterday Eliana went through 6 outfits and I went through 3.  Yuck - too much information?

We have new neighbors and were outside talking with them last night - just meeting them and getting to know them a little bit.  Well, it was just after Eliana had eaten and I was holding her.  I felt her begin to leak, but didn't realize that it was as bad as it was.  We were both drenched.  What a way to meet someone, huh?  They seem nice though so hopefully it will be something we laugh about one day.

Eliana is feeling fine!  Yippee!!!  I'm so thankful she is not in pain.  She does not like bandage changes, but her skin is looking fine so far.  I'm putting Mylanta on her skin to help with the acid from the leakage.  Hopefully this will help.

I've found that she does better, in terms of leakage, if I can hold her reclined for 30 minutes to an hour after eating.  This works fine if she has fallen asleep.   Obviously it doesn't work if she is awake and those tend to be the really  messy times. 

As of this morning, with a big messy leak, I think it's best we stay home from our out of town field trip.  I hate to miss this time with friends, but think it would be too hard and just not the best for Eliana or I right now.  Sometimes it's hard to put *my* needs ahead of what my children would want, kwim?  I know that is part of my struggle in this decision.  I guess it's a good opportunity to talk about sacrifice and choosing to put others first.  I know they will understand.

I've been asked what Eliana's button looked like when it was pulled out.  (My dh wanted to know!)  I didn't see it.  At this point, Eliana was very upset and my eyes were on her.  Here is a picture though for those who are interested.  The large part at the bottom was the part that was in her tummy.  The tubing is the size of the hole in her tummy.  (Thus you can see why it hurt to have something large pulled out of a smaller hole.)  I think too that the skin had probably attached to it (thus the bleeding and need for cauterization).  Enough of that.  She is really feeling fine today.  :-)

Thank you for your prayers.  I'm thankful that this is the beginning of the end of feeding tubes.  I called yesterday to the medical supply company to let them know we are finished with the pump.  I will be glad to have the last of the medical supplies/machines out of our bedroom.  It's been 15 months of machines and soon - none.  :-)  Yippee!!!

I've learned a lot and hopefully am more tolerant and patient as a result.  I'm thankful for all that I've learned - though I would not have chosen it.  I am trying to walk each day one at a time - living, loving and learning with my precious family.  I am so richly blessed!

Thank you friends for your prayers.

With love,

Leslie

I’m feeling behind here – and in most areas of my life.  LOL  You’ve heard that before haven’t you?  Just want to make sure that I don’t ever portray a super mom image – I’m not one!  Just trying to do my best each day – often failing and thankful for grace and forgiveness and fresh starts.  I’m also trying to just live life – letting go of things that I can’t get to and trying to get to the things that matter most.  Sometimes I do better at this than other times.  There is always so much more to learn!

I wanted to update a little on Eliana and all that she has been up to.  I’ve already typed this once and lost it – ugh!  Going to try to do it again and get it saved this time.   I am having trouble with photobucket and am not sure what is going on there!

Eliana can crawl up the stairs on her own, though needs a lot of encouragment and enticements (toy or sibling cheering her on).  She doesn’t typically try to go up the stairs on her own, which I can’t say that I’m too sorry about.  It seems a little silly to work on a skill (I know it’s a good one) that once mastered we will do all that we can to keep her from repeating.  We aren’t able to teach her how to go down the stairs safely at this time due to her g-tube.

So many things to teach.  So many things you take for granted with most children.  You just don’t set out to teach them a whole lot of things – they just learn on their own.  Like how to eat, how to stand, how to speak and more.  I’m amazed and thankful that people have figured out ways to teach these children that don’t learn in a traditional manner.  I had someone ask me if working with Daniel’s sensory issues was a lot harder than Eliana’s "stuff".  It doesn’t even come close!  I know that through all of this that God is going to teach me so many things that I need to learn!  I’m thankful to be learning from a cutie pie.

One of the new things we’ve been doing is using pictures on a piece of paper to help her communicate.  Her therapist made a sheet with some of her favorite things – cow, turtle, music, book, ball and bear.  We will point to the picture and then ask her if she would like it.  Or talk about it.  If she points, then we give her the object, in essence rewarded her for asking.  We are using this in addition to speaking the word and sometimes signing the word as well.  Hopefully using a combination of methods will help her to learn and be able to communicate with us.  She is babbling, but not really saying words yet.

I’m thankful that Eliana has numerous teachers – from therapists to her siblings.  She is blessed to be surrounded by so many people that love her.  Rebecca has been trying to teach her "doll".  She says the "d" sounds when Rebecca says doll, which delights Rebecca.  She has also been trying to teach her how to feed the doll a bottle. It’s really cute.

Eliana had physical therapy today and her therapist was very encouraging!  She commented on how much better Eliana was doing at things from just last week!  This with being gone most of the week too!  Yippee!!

She is cruising on the sofa!  It's really cute.  We remove the cushions to make the height a little easier for her.  She is doing a lot better than last week when she did this for the first time.  She also stood on her own - very briefly - twice today.  Once for me and then again while her therapist was here.  She is learning how to squat from a standing position and also how to stand from a squatting position.  All of this is hard work - and she is doing so well. 

Here is a look at the rest of our week:

Tomorrow we have speech therapy and then my sister and her children are coming to visit.  We are very excited to see them as it has been several months.

Friday we have an appointment with Eliana's surgeon to talk about removing the g-tube.  I'm not sure if he might remove it then or just talk about it.  I really don't know what is going on.  We would love your prayers.  I've been told that the removal of this g-tube (Bard) is a painful one.  Later that day, my oldest will be doing a dissection with a friend of a crayfish.  Yuck.  Then that evening we have our sweet friends from VA coming for a visit.  There's more, but that's probably enough for now.

I still want to write and post pictures on Easter (we spent 4 fun days with our friends in VA) and a couple of our field trips this past month.  More later when I figure out how to get to the pics at photobucket.

Thank you to the dear friends that have written me and who are praying for us.  I appreciate both so very much.  I'm trying to write back, but please forgive me for being slow.  We are doing pretty well.  Two of my children still struggle at times with the loss of our little one.  I'm doing OK.  I try not to think about it too much to be honest - though as most of you know, being pregnant can be consuming in regards to your thoughts and it does pop into my thoughts often.  I'm thankful that God is carrying us through this time, like He has through so many others.  I'm not sure what I'm supposed to be learning - though I've gotten better at just leaning on Him and trusting instead of fighting for my own way.  That doesn't mean that the hurt is gone, just that I know He is with me every step of the way.

Here's one last picture of our little angel.

Love,

Leslie

We met with Eliana’s ped this afternoon. She is a true gem! I thank God often for her as she has been wonderful for Eliana – and for me! I know God placed her in our path while we were at the hospital. I’m thankful she has walked this road with us.

Eliana is doing great! :-) She is up to 19.5 pounds now and is 29". She is still low on the growth chart – but doing fine as she continues to grow on the curve.  Dr. L even commented that she may be getting my height! ;-) (She would be the first!)  One of the first things she said to me when we saw her was to comment that I probably wanted to talk about removing the g-tube! Of course, she was right! We talked about it and she knows that I haven’t used it since Eliana had salmonella in late Oct/early Nov. She agreed that it was time to remove it – though cautioned me that the surgeons don’t always want to be quick to remove them. She called and set up an appt for us for next Fri (10 days from now) to meet with the surgeon! Did I mention that she is fantastic?!  I'm not sure if this will be a consult or if he will actually remove the tube. 

She asked me how feeding was going and I confessed that my priority remained liquid foods as I really want her tube out. She asked if I was counting on the calories from the formula and I said yes. She does eat some solids, but not enough to make up the calories. She thanked me for being honest with her. I can’t imagine being anything else.

We talked some about her falling over, though she didn’t seem concerned. Eliana has not done it since yesterday either. A friend mentioned that it might have been due to flying and the changes in altitude. I’m hoping she is right! What relief to think it might be that instead of any of the other things that I wouldn’t let my mind think about.

We talked about her development and other things – all doing fine.  Dr L also commented that while Eliana has low tone (typical with Down syndrome) that overall her tone is pretty good.  These types of comments are always encouraging to me. 

Eliana had to get the last of her synagis shots today. We won’t be back for 3 months! Imagine – 3 months! That seems such a long time. The longest we have gone thus far is monthly. I’m thankful she is doing so very well!

We drove from her appt to mine (follow-up OB). I arrived a little early and we waited. I was a little anxious about how I’d feel and wondered if being there would set my emotions going.

After I arrived, I was sitting in a waiting room across from a pregnant woman and the tv/video that was running was talking about pregnancy issues when I sat down. (It’s like a news show with various topics – not all are pregnancy related.) I sat there wondering if I could handle this and talking to God about it.  I felt fine.  I was able to look at this other woman and feel happy for her.  Knowing she was joyful as she felt her little one kick.  I was thankful that God would allow me to see things from this perspective and not focus on myself.  

I have felt an amazing peace during this loss - more as times passes. At times it doesn’t seem right – as though somehow it lessens the loss. It’s not to say that I haven’t felt pain and hurt – I have. It was especially hard the first couple of days.  I wonder if maybe - just maybe - I'm learning a little more about leaning on God.  I know that I’ve had more than my share of struggling with God over the last year and this time I’m just trying to relax in His arms.  (I like to actually picture myself crawling into His lap and just being held.)  Knowing that He loves me. Trusting that He knows best. I wish I could stay here all the time. I know it’s my choice and I’m not sure why I ever choose to leave. So many lessons to learn. I’m thankful our Teacher is patient and good.

My healing seems to be good and there are no problems. I spent time just talking with my midwife. She is a Christian which is a sweet blessing. She asks good questions and is patient about listening to me talk things through. I didn’t have a lot of questions – but shared a lot of my ponderings. I appreciate her encouragment.

I have always loved my OB practice. I have gotten to know a lot of people there over the years. Given my HG pregnancies, I find myself visiting far more than normal (Weekly from about week 6 on.) This has given me opportunity to build relationships there for which I’m thankful. I saw one of my favorite doctors (he did most of my prenatal care with Eliana when I was soooo sick), who came up and congratulated me and gave me a hug. I hated having to tell him that the baby wasn’t there as I know it made him feel badly. He loved seeing Eliana and immediately asked to hold her. She is having a hard time though with "strangers" and isn’t happy being held for long. I also saw briefly the dr that delivered her who commented that she had heard Eliana was beautiful and agreed. I spent time talking with several of the nurses and another dr who all seemed to enjoy our little cutie! Overall, my time there was good. I’m thankful for the wonderful care I’ve received there for the last 13 years.

Thank you dear friends for your prayers. I’m thankful to have one more day in which to say God is good. He loves me and blessed me through good times and difficult ones. I’m thankful to be resting in His arms.

With a grateful heart,

Leslie