A Time for Mourning ...

My heart is aching.  Thank you for the notes and words of encouragment you have sent or posted.  I appreciate them greatly.  It's been hard over these months to deal with the changes in my life.  It's time for one more.    

In addition to that, Eliana is not eating well.   She didn't do too well on Sunday, but some of it was because she was asleep through a couple of feedings.  Between church, the doctors office and a meeting at my house, her sleep was very interupted.  It's plummeted in the last day. She was doing so well and I'm not sure what is going on.  She has been taking about one once at a feed.  About half of what she was doing.  I'm hoping that this isn't just a short phase - and something that will soon be corrected.

We see the surgeon on Friday about the problems with her button. I think that they will cauterize the site to eliminate the red swollen tissue. Please pray that the procedure goes well - no or minimal pain for Eliana. No infection.   I really don't know much about it.  I'm just willing to wait and find out more then.  The surgeon's nurse told me that the antibiotic Eliana is taking wouldn't help it at all with this issue. 

I'm struggling and find myself crying often.   It's been a sweet 17 years of friendship.  Walking through everything together. That is a really really long time. I just can't believe that in 2 days she will be gone.    I know we will still be able to talk.  I know we'll still be able to visit.  Yet I'm so sad to lose the closeness, the familiarity and the ease that we have now.

There are times when I feel like I've been walking in the wilderness - and it feels like there is no end in sight.  I'm feeling overwhelmed     I'm so tired of crying.  I long for a different time - back when things weren't so very hard - or better yet a new time when I'm better able to stand in the rain.  I feel very weak. - and need prayers for a stronger faith.  Thank you for your prayers

Love,

Leslie

The truck is here

***As I've written this and looked back over it I realize that it is utterly depressing.  I'm not sure if you will want to read beyond this.  Don't if you don't want to just read sadness.  That's all that is here.  I'm just overwhelmed with sadness right now.  ***

What a thing to get up to this morning.  My daughter walked in with tears in her eyes.  When I asked her what was wrong, she told me that the truck was in front of their house.  It didn't really hit me - until I saw it for myself.  I remembered the last time a truck was there  - 7 and a half years ago - and how very happy we were to have our friends moving in beside us.  And now ... something we never thought would happen. 

I want to be there.  I want to help, but I can barely keep it together.  And honestly I'm not all that much help either while holding Eliana.  So I'm here.  Just sobbing.  I'm tired and weary from this ride.  I'm ready to get off.  Yes, I know that this is not the most difficult thing people are facing.  Yes, I know that it isn't a life and death scenario.  Yes, I know that we'll still be friends.  I also know that I am going to miss her - and her family - so very much.  How often is that someone is blessed like we have been - to live right next door to each other?  I am thankful for the time we've had.  I'm also sad for the time we had thought we'd have - and won't. 

Just last night I was reading an article in a homeschool magazine about special needs children.  I'm sure at a different time it would have been - or maybe will be - encouraging.  For now, it was just depressing.  It talked about the weariness of caring for a child with special needs and how most people just don't understand.  Having walked on both sides now, I realize how true that is for me.  I know that I tried to be helpful and supportive.  I did the best that I could and hope that I was helpful.  I can see now that I should have done so much more - though I couldn't have known that then.  I saw how hard it was which is probably why I prayed over and over and over again that Eliana would not have Down syndrome.  Yes, specifically that prayer. 

That sounds horrible I'm sure.  I love my little girl so very much.  I wouldn't give up having her for anything.  I am so very thankful Eliana is in our family.  I have watched my precious friend love her little boy so very much.  I have also watched her struggle with the weight of caring for him - the changes in how you do things, the endless therapies, the years of stages that you hope that they will one day grow out of and the huge unknowns about the future that are so very different from the unknowns with your other children.

When Eliana was born, we both heard over and over again how blessed I was to have a friend that had a child with DS.  Honestly, at the time I didn't really like hearing that.  It was as if somehow the road would be easy.  I think what they meant was that I would have someone walking the road with me that not only loved me, but that understood the weight of this path.  I have struggled at times with sharing the weight - wondering how others would take it.  Some have told me to be happy for the good things.  I do try.  I can't ignore the pain either though.  It's hard to balance sharing the love and joy that a special child can bring while also being honest about the fears and struggles that come too. 

I don't understand.  I feel so much now that I don't want to feel.  This is hard - so very hard.  Why is this a part of God's plan?  Why now? 

I hesitate even posting this.  It's raw and not very pretty.  I'm weary and hurt.

Thank you for your prayers.

Leslie

Fears ... tears ... friends ... encouragment

So many things to say - yet my mind is such a jumble and my heart is so heavy.  I wonder sometimes if things had been timed differently would it be so hard?  It's just been so much for so long.  From a physically VERY difficult pregnancy to all of the many issues we've faced with Eliana, from sleepless nights to saying good-bye.  I'm weary and tired.  And very sad.  I'm struggling and really appreciate your prayers.

I have a new request for Eliana.  The site around her "button" has been red and irritated looking for a week or so.  I've been treating it per the dr's orders.  This morning I noticed that it looked swollen, very red and much larger coming around the button.  It's just not right.  I took her to see the ped on call today and he prescribed an antibiotic for her. He said though it was weird to say - that he hoped it was an infection -  as this would clear it up.  If it isn't better in a couple of days, I will need to go back and see the surgeon.

I asked if there were anything that I could have done - and he quickly told me that it wasn't my fault. I asked if there was something different I could have done and he said no. I'm not the best at attending to details and I would hate to think that this would hurt my sweet girl.  He encouraged me by saying that even though he didn't know us that he could tell she was well cared for.  He also told me that he was surprised to see this as her surgical sites have all healed well.  (It's granulation tissue for those that are in the know medically.)  I'm not sure what all of this means - and don't think I want to know right now either. My mind is full and my heart is heavy. I know that the "site" is not completely healed yet and am hoping that one of the problems won't be that it closes or becomes compromised in any way. I'm not sure I can deal with any "what ifs" so I'm choosing to stay in the dark.  I know - not the best way of dealing with things - but it's all I can do right now.

I hosted the first Mom's meeting for our support group today. Only I wasn't here to start the meeting since I was at the doctor's office so thankfully two friends took over for me.  Thank you Lea for the food and help with the meeting.  Thank you Catherine for stepping in and welcoming everyone and helping too.  Something we are used to doing for each other.  Something I am going to miss.  We have organized things for this group for a long time.  I really don't want to do it without her.  Today as people were making introductions (we had new folks in our meeting) we said our name, children's names and ages and were we lived.  (We live in a metro area with many cities in close proximity.)  When it was Catherine's turn and she said she would be living next door for another 72 hours ...  I did pretty well holding it together - much better than I'm doing now.  It was a sweet time with other moms.  It always has been.  I was thankful for friends bringing food and drinks as I hadn't done that.  Lots of hugs too.  I appreciate the care of my friends so very much. 

Someone asked me today how I could "do so much'.  That question surprises me (though it isn't the first time I've been asked) as I don't feel like I do "so much".  I didn't really know what to say.  I pondered on that more today and realized that much of what I'm able to do is due to having wonderful friends.  I am truly blessed beyond measure with an amazing group of friends.  There are many things I don't have to do - or learn - as I can depend on friends to pick up these areas.  (Learning about nature for example is a huge deficit for me - and I'm fortunate to have friends that know so much.)  I have a group of dear friends that have helped carry this load, helped to plan co-ops, camps, field trips and events for our group.  As I reflect on my friends my heart is filled with thankfulness.  For you dear ones that are reading - thank you!  I try to be careful about not talking about people by name - don't want to embarrass you if you don't want to be listed.  (Sorry Catherine - I know you would have rather remained nameless too - but you have already been named.)

I feel  I keep trying to write what I'm feeling and I'm having a hard time. I'm not depressed - just so very tired, weary and sad. I don't think I've ever been in such a hard place for such a long time. I've cried more in the last 8 months it seems than I have in my entire life. I never thought of myself as particularly emotional - but I couldn't say that now

I've typed and deleted and wondered about what to write.  Putting my thoughts to paper just leads me to tears.  I keep wondering if one day things will ever be like they were before - I know that the answer is no.  Please keep praying for the many hearts that are aching due to this move.  My oldest son doesn't understand why I don't just "look at the bright side" of things.  I told him that I didn't see a bright side.   I see something that God has allowed or is orchestrating that right now just hurts.  I know that He will work good in this.  I am trusting - or trying to - that He will do some amazing things.

Until then, I'm just sad.

One last thing.  I would love if any of you could post ideas, verses, poems, etc. of encouragment.  I'd love to put these together for Catherine.  If  you have ideas to share, please send them or post them here.  I've received some neat ones already from friends.

Thank you for your prayers and support.

With love,

Leslie

"Our House is Yucky"

Or so says my 3yo.  He doesn't really think it's yucky.  His motives were clear to me soon after his next words came out - "I go to Catherine's house".  Hmmm ... is that all it takes to visit a friend?  Thinking that your own home is yucky?  LOL  Sometimes I just love the simplicity of a child's mind.  The ability to ask for what you want or need - albeit in a round about way.  This child of mine is such a funny little fellow and his way of thinking just tickles me at times.  I love his laugh and wide grin.  He does bring joy to my days.

I've tried to explain to him that our friends are moving as I don't want it to come as a complete surprise.  I don't think he understands though he responds to me that he does.  To be honest, I really don't understand either.

"For My thoughts are not your thoughts, Nor are your ways My ways," declares the LORD.

Isaiah 55:8

Just yesterday Catherine's youngest daughter said to me "Do you know we are moving in six days?"  Oh yes sweet child.  I know.  I know it far too well and think of it much too often.  We are trying to move about out days filling them with projects and fun - and still getting done the final things that must be done.  At times we can be practical, but as the pictures come down and things get put away the starkness is a sign of all that is yet to come.  It's depressing.

A sweet friend noting my sadness over this move asked what I'd be like when it was time for my children to move out.  I can't bear to think of it.  I know it is coming too - and far too soon for my liking.  I tear up just thinking of that day.  I love being with my family and having them all around me.  So I try not to think of it often - but often enough to remind me of what I want to be doing with my days so that I won't have regrets.  Often enough to remind me to choose the important things and not fret (so much) over the things that really don't matter.  (I still have work to do on this!)

That is a little unrealistic - wanting to have no regrets - because of course there will be regrets, but hopefully not too many.  That's a voice that I'm hearing now - the whispers of times when I should have done something differently or when I have not been the friend that I should have been.  What a sweet blessing though to know that she knows my heart.  She knows me.  It's a very safe friendship.  I'm sure that there were times I took for granted the time that we had and the convenience of being so close.  Isn't that often the way that it is though?  I know that I can't expect not to make mistakes.  My heart is just so very tender now - and has been for quite a long time now.  I keep trying to focus on God's voice as the whispers that aren't from Him can really be a burden - and a source of further pain.   

Oh, I need to focus on some happier thoughts.  Catherine and I have been working on making planners for the year.  This is a new project for us and it is a combination of the FIAR planner and personalized forms.  (Catherine is a whiz at making beautiful forms!).  She has finished hers and hopefully mine will be done and ready to use by tomorrow.  This is one of  many projects we have worked on together.  I'm not going to say it is the last either as I know we can still work on things long distance.  It will be the last one that we have the luxury of just running back and forth to each other's houses with pages, ideas, and requests for help though.

A big PRAISE update on Eliana.  She had her physical therapy on Wednesday.  This is usually a fun appointment as I am encouraged by what she can do and not overwhelmed with what she can't do.  An attitude I'm sure to have lots of time to practice and learn. 

Eliana's latest thing is to get up on her hands and knees  - and rock!  She is so cute and looks like she is ready to go somewhere.  When her therapist noted the things she was able to do and marked them on a graph she had really shot up.  This graph shows typical developement for a child.  Eliana has never been on the curve - but now she is on it!!!  Happy tears filled my eyes as she shared this.  She is between the 10th and 25th%.  This is still "behind" a typically developing child, but given all that she has been through, I think it's pretty amazing!  Way to go little girl!

Eating continues to be going well.  She is eating from the bottle each time it is offered.  She hasn't refused it now for over 2 weeks.  Yippee!!!  Today she has had 3 feedings and is already up to 8.5 ounces.  This is great for her!  One more good feeding will have her reaching a new high for eating.  I appreciate your continued prayers for her feeding.

Need to run finish dinner.  We've started the main dish as a school project for my younger boys.  (It's the Amber on the Mountain meal for you rowers.)  Catherine is working on the side and hopefully we can muster up the energy to make some cookies to go along with it. 

More later as I'm working on a project and would love some help.

With love,

Leslie

Time ... why is there never enough

There are moments when time seems to drag ... but more often than not, once you have reached adulthood, time seems to fly.  This is especially true at some moments more than others.  This is Catherine's last week here - and I just want time to stop.

I haven't been able to type much as my days are just too full.  (I've certainly remedied that this morning as I ramble on here.)  We are trying to squeeze out every last moment of this last week.  Back and forth to each other's house often - and late into the night too.  We've been talking, working on making our planners (we've always loved to collaborate on things), sharing meals and more. 

I find myself reflecting on so many things.  It seems that every place holds a memory - from our homes to roads we've travelled, times we've shared and places we've been.  Memories keep flooding my mind - many of them from long, long ago.  We've watched our children grow up - and  had planned on doing it until we were old.  *sigh*  We've done a lot of growing up ourselves.  I really don't understand God's plans.  That is true for much of what has happened over the last 8 months though.  Don't get me wrong - I can see good that God has wrought through this.  I am thankful for the ways that He has blessed me in the midst of this time.  I just wish that it hadn't all been like this. 

I remember hearing a speaker (Sally Clarkson) talk about her daughter going through a trial and hearing God ask her if she would rather her daughter be deep and godly or shallow and happy.  Yes, we all want deep and godly.  Yet most of us don't want to walk the path to get there.  Who would?  While I think we do look back and are thankful for the path and it's results, but it is still hard to walk it.  I also remember my not so godly response as I turned to Catherine after hearing that question and said that I was voting for some time of shallow and happy.  This was in March - I had been through a very difficult last three months and heart surgery was still looming in front of us.  I didn't want to be shallow.  It just seemed that happy came with no worries or cares.  I wanted happy - but is that really what I wanted? 

Or am I looking for joy?  Something much deeper and richer than just being happy.  Something that isn't a result of the circumstances of my life, but rather is a result of God in my life.  Yes, I think that's it.  I want joy.  My sweet Eliana Joy is a good reminder to me of that.  I'm guessing that she will continue to remind me of so many things.  That she will continue to teach me many things including what really is important.  Lessons I thought I had learned, but clearly not to the depth that I needed.   

I know that through all of this, that God desires good for us.  I only wish that it were not so very different from the good that we desire for ourselves sometimes.  Doesn't that sound awful?!  Like a small child demanding my own way.  I know that God can use this for good in us - but why does that so often involve pain?

I remember many years ago when Catherine and I were doing a Bible study together.  I think at the time we had only 2-3 young children between us (We have 10 now.) and we weren't yet neighbors.  We were talking about people that had a deep faith and how so often it seemed that this came through trial.  We both observed that we really hadn't had much happen in our lives in the way of trial.  We both desired a deeper faith - but honestly didn't want to go through fire to have to get it.  We wondered if this was wrong - to want the benefits without the work.  I don't think it was wrong to want it that way - it's just a natural response.  We all long for a deeper walk with God.  I wish that it could come without having to be broken.  Pain leaves such deep marks - holes even.  Maybe though we can't have joy without having the holes that pain causes.  Maybe joy can only flood into our spirits when there is room.  Room that can't be made on our own.  Perhaps the happiness that comes with being shallow is because there is no depth for the joy to pour into.  I'm not sure.  I pray that I would leave myself open to God - to flood my heart with His joy, peace and love. 

I wanted to give an update from Eliana's appointment with cardiology on Monday. 

It was a day of testing - EKG and echo, but thankfully no bloodwork!  All looks great.  Her heart is doing well.  We won't have to go back again for another 6 months!  What a change after almost weekly visits for awhile.  We thought 2 months seemed like a long wait until this appointment.  We have been blessed with a fabulous cardiologist.  I'm thankful for him.

We also got the results of her bloodwork - NORMAL.  No thyroid problems or leukemia at this time.  Thank you God!  I know that everyone wants to hear the word "normal" on test results, but honestly it has taken on new meaning after having some not normal results on things.  

Feeding is still going well.  We are about the same with her taking at least one and often 2 ounces at a feed.  I'm hoping that will increase over time.

G-tube button is still popping open, though not as much if I keep a onesie on her.  We are tentatively scheduled to get a different button in Sept, though honestly I'm not sure if I want to do that.  I don't know that I want to trade the problems I know for a new set.  Does this make any sense?  I wonder if we can just keep this one and hope that it won't be needed for long!  A girl can hope, right?

I'll try to post pictures later in the week when my dh returns home.  (I don't know how to upload them.)  Please continue to pray - pretty much the same as the last entry.

I am abundantly blessed and yet my heart just aches.  I have joy and hope in the One that loves me.  I know that trusting Him does not mean a life without pain - even Jesus had much pain in His earthly life.   I know that loving and serving Him does not mean a life without heartache and sadness.  Jesus experienced this too.  I am thankful for a Father that loves me so very much.  I can't imagine walking this road without Him!

With love,

Leslie

Upcoming week & a few pics

"Be glad and rejoice for the Lord will do great things."  Joel 2:21

Here is a more recent picture of Eliana.

This was on a birthday greeting I received this week.  I love it.  It's a wonderful verse for me to meditate on as I can find myself just feeling sad at times.  I know that if I fill my time praising God that there won't be room for feelings of defeat or sorrow.  Now, I know it isn't a magic wand to wave things away, but is a good start.

Here is a picture of my morning birthday greetings - with food, cards, gifts and sweet smiling faces!  It was really a sweet time with these children that I love!  (Christopher isn't in the photo as I think he was still sleeping.  He doesn't rise as early as these early birds do.) 

Our calendar isn't looking too full this week - for which I'm thankful!!!  I do enjoy "getting out", though I also appreciate quiet days at home too.  Honestly, our getting out these days usually involves medical appointments and that doesn't really count. 

Monday - We have an appointment with the cardiologist.  I'm not sure if she will be having any testing done - blood, EKG, echo, etc.  Please pray that all would go smoothly if she needs to have any testing.

Eliana's button site is still red and has not improved.  I'm hoping that the cardiologist will be able to help.  I might also try calling the surgeon's nurse to see if I can see her since I'll be over there tomorrow.  I just want to know that what I'm doing is the right thing - and not to miss something which could cause further problems.

We've also talked some about Eliana getting a new/different button.  At times it seems like a good idea - like when the button pops open and makes a big mess.  At other times though I wonder if I'm just going to be trading problems.  KWIM?  Would it be better to just keep this set of problems that I know?  As always, I wish for wisdom and clarity in knowing things I really know nothing about.

Tuesday - Feeding therapy.  Eliana continues to do well.  She has been taking at least 7 ounces per day.  She will often take 2 ounces at a feed which is so encouraging to me!  We still have a ways to go, but at least she isn't refusing the bottle altogether as she had been doing.

We are needing to figure out more on feeding solids.  We haven't done much with this, but know that we need to tackle that too.  She will try some and doesn't seem to mind it.  Most of it comes back out though.

Wednesday - Physical therapy.  This is one of the times I feel most encouraged.  Eliana has just started getting up on her hands and knees in the last couple of days.  She looks like she is getting ready to go somewhere!  I'm not sure I'm ready for that yet.  As if they ever wait until we are ready!  LOL

Thursday - This has been our "fun day" for so long.  It is the day we do our field trips.  We took our last one just 2 days before Eliana was born.  I have really missed these outings.  I miss this time with my children.  I'm nervous about even thinking of resuming them.  We are planning a park day for next week with our FIAR homeschool group.  This will be our first outing - the children and I - that lasts any length of time.  It will be our trial run to see how  "portable" Eliana and this feeding tube can be.  It's really a shame we haven't been able to travel with her as she has been such an EASY baby in terms of fussing and temperament.  She has been an easy baby - it's just the medical stuff that has been hard.

We are having our house cleaned again on this day.  Thanks Mom!  It's so nice to have this done - everything cleaned at one time - even if only for a short time - it's still nice.  I do need to pick up before they come though as some of our treasures (aka playmobil parts) might look like trash to someone else.

Friday - Another day of nothing.  Hopefully the children and I can do some fun things on these days - art, experiments, reading books and whatever else strikes our fancy.

Prayer requests are much the same:

*Eliana's feeding to continue to improve!  Wisdom in knowing the amounts to give, spacing of feedings, techniques to use in holding her and the bottle and more.  I am prayerfully hopeful that one day she will again be able to eat all that she needs on her own!

*Eliana's button site and surgical site are both red.  I think maybe she is trying to "pop a stitch" at  her surgical site.  It doesn't look infected, but is red.  The area under her button is also red.  I've been putting bactraban on it, but it isn't healed properly.  Also pray that the button would just stay closed when it is supposed to be closed.  It really makes a mess when it opens.

*Peace for my heart.  I feel in such a swirl of emotions some days - and the weight can seem so much.  I'm trying to take naps when I can as I know that lack of sleep doesn't help at all.  Oh, I do look forward to the day when I can get a full night's sleep!  I know that I need to hand over this load.  I do better on some days than others.  I appreciate your faithful prayers.

*Vision as we start back our schooling.  I want to make the most of our time and not fill it with unnecessary things or pursuits.  I want to  spend our time doing the "best" things and not just "good" things. 

*Blood test results - We haven't heard back which I'm hoping is good news.  Perhaps I'll learn more tomorrow?

Will try to post more later.  I want to share some photos and some fun from Sat.  ETA:  I've put in a few photos and here is one last one of me with my girls.

With love,

Leslie

Birthday and more about our week

I had thought on my birthday that I would write a list of all of the blessings I received on that day.  From early morning birthday wishes via email (before I went to sleep) to messages on the FIAR board, to a chorus a precious voices singing Happy Birthday to sweet friends notes, cards and calls. 

My youngest children of course were up early.  Only Christopher & I ever want to sleep in.  LOL  He gets to on many days and I'm looking forward to my turn!  Rebecca and Joshua cooked a breakfast for me to have in bed.  They brought up the tray of delicious food (bacon, grits, biscuits, juice and milk) while singing to me.  They also had many gifts for me to open.  Daniel was quite taken with the gift he had presented to me - a candy bar - and carried it around for quite a long time examining it and asking me questions.  I'm surprised he didn't try to eat it!  My sweet girl gave me 4 cards!  Two she had bought and two she had made.  All were very sweet and indicative of her tender heart. 

She tried to corral the boys so that I could rest after breakfast.  I tried to sleep amid the boys coming in and out to ask me questions or tell me happy birthday. 

Catherine brought me a yummy smoothie in the afternoon.  For dinner Roger and Christopher cooked (low country boil - shrimp, corn, kielbasa) a great dinner.  Christopher also made me a CD of many of my favorite songs.  It was a thoughtful gift from him.  I am truly blessed and have much to be thankful for.

Other happenings this week as I'm somewhat behind in my writing.  I'm behind in so many things that I feel I shall never catch up.  Though don't we all feel that way to some degree?!

Physical therapy - All is going well.  It's fun to see Eliana learning new things and for me to learn new games and ways to play with her that will benefit her development.

Feeding therapy - I told our therapist that since the last meeting she had greatly improved!!!  She has not refused the bottle since July 31!  This is a wonderful praise!!!  She typically will take from 1-2.5 ounces at a feeding.  Over the last week she has taken from 7 to 10 ounces per day.  This is up from 4 being a great day in the past.  Last night she took almost 4 ounces!!!  I was thrilled.  I was choking back happy tears.  It's times like this that make me think that maybe there will be a light at the end of the tunnel.

Keepers of the Faith - We belong to a group of families that plan and teach various skills, hobbies, crafts and skills to the children in a variety of areas.  It is similar to scouts in that the children work towards earning badges.  There is a Christian focus to the program.  We had our planning meeting for the year last night.  It was during this time that Eliana had her great feed!  She had been asleep through most of the meeting and had gone a little long for her feed - but it was so worth it to get such a great one!

Homeschool - We are plugging along.  We haven't gotten done all that I wanted to this week, but all in all we had a good week.  It's been fun watching Isaiah learning to read.  I'm hoping that we can get into a good routine so that we can be more productive.

Medical equipment - We have had quite the saga regarding getting the items we needed.  This week I received a shipment of NG tubes - that we no longer need.  The kicker though - they were still the wrong size!  This is the 3rd time they've sent the wrong size.  I called today and talked with several of the gals and hopefully we'll have it straightened out soon.  Later this afternoon I received another package and it's a new extension to the pump/button.  It's also the wrong one!!!  Lastly, I received a bag in which to carry her pump that is supposed to help make it easier to go out.  I haven't tried it out yet, but hope to soon.  the surprise to this one was the price tage - $400 for a nice backpack basically.  I'm thankful we have insurance.  It's amazing to me the price tag on some of the medical equiment/supplies.

More later as I'm about to fall asleep.  I want to upload some photos and share a verse. 

ETA:  It's morning now and I have a few moments before Catherine and I head out for spa pedicures.  Happy Birthday Catherine! 

Love,

Leslie

Feeding Progress and More

Hi Friends,

I first want to thank y'all for praying.  My heart is sad and I know that it's just going to be this way for awhile.  I'm trying to focus on the positives, and there are so many of them in my life.  There are times though when it is just hard.  My dear friend Catherine will be moving in 2 weeks.  It's just too close now to deny any longer.  We don't talk about the emotions too much - but they are still there.  We can each see it in the other's eyes.  The words unspoken yet still there.  I knew when she hugged me at her daughters's party that she too was thinking of it being the last.  The last one where we will run around helping each other to prepare and pull off a party. 

As I go through my days, so many memories come flooding back.  Memories made over many many years.  Sweet memories of times spent together.  Also memories of trials and walking those together as well.  We have been so blessed to have had 17 years of friendship so far.  We know God will work in this, though it's hard to understand from this point what His plan entails - and how good will come from it.  Please pray for my precious friend as this is a very hard time for her.

Feeding - I'm so excited to be able to share good news!!!  I've hesitated in posting, in getting my hopes up that perhaps things were really changing for the better.  I do think that they are though!

I think I shared that we met last Tues with the feeding therapist and she had her first good feed there - ever.  One small change we made was in holding her hands in front of her during the feed.  She used to do this herself.  I loved the way that she would put her hands on mine as I held the bottle.  She hasn't done this for awhile.  Since that feeding she has taken food from the bottle EVERY time I've offered it!!!  This was not the pattern before at all.  She has taken at least an ounce at all but 2 of the feeds since then too.  (Both of those feeds she fell asleep and couldn't be wakened.)

She has also taken several feeds of over 2 ounces!  This is so encouraging!  She has eaten 7.5 to 9 ounces per day over the last three days.  Before a good day was 4-5 ounces.  We are definitely improving!  Now we need to work on building up her endurance. 

I asked her feeding therapist today if she thought Eliana would ever be able to eat fully from the bottle or if we would just end up transferring to eating other ways.  She said that she thought Eliana would learn to eat!  I can't tell you how many happy tears I've cried when she has drained her bottle.  This prolonged period of success (one week) has given me hope - hope that my little girl will learn to eat.  Thank you God!

G-tube - We haven't had the button pop open all the time.  I'm trying to keep her in a onesie to hold it down or using paper tape (which isn't as irritating to her skin).  It does still happen though.  One night she pulled the connector tube out - during a feed - which made a colossal mess!!!  She was asleep - in wet clothes, a wet diaper and on a wet bed.  Poor baby.  Lots of changing and cleaning and then rocking back to sleep.

 A new problem is that there is a red place under her button where the skin is irritated.  This showed up on Fri - after I had seen doctors and people every day of the week.  *sigh*  Isn't that the way that it is sometimes?  I thought perhaps it was due to the "belt" I'd had around her to keep her button closed.  I stopped using this and waited a couple of days.  It hasn't improved.  I called the ped office and was encouraged to put bactraban on it.  I do hope that it will clear it up and that the area wouldn't get infected.

Schooling - We have started back and are easing into things gradually - or at least we are trying to do it slowly.  Isaiah read his first words yesterday in his reading lesson.  Way to go!  That is always an exciting milestone.

I'm reading a book to the boys that I wish I hadn't started.  I had given the boys a choice of which book we would study this week and Joshua picked Amber on the Mountain.  I have frequently chosen this as a start to school book since the main character in the story learns to read.  I thought it would be a good choice since Isaiah is learning to read also.  The part I had forgotten about were the lessons on friendship and the pain of a friend moving.  I could hardly make it through the discussion.  It is appropriate in the timing, but hard too.  Maybe it is something that needs to be discussed with the boys.  Joshua has such a tender heart.  I remember once he asked if it was alright to cry when our friends moved.  I of course told him that it was.  He then asked if it was alright if he cried bucketfulls of tears. 

Christopher is starting high school.  Things are going well.  It's really just an extension of what we have already been doing.  We aren't going to change what has worked well for us thus far and one day hope to start back on the many field trips and the travelling that our family enjoys.

Not surprisingly, it is late.  I'm headed to bed soon.  I would love to share a few prayer requests with you.

Prayer requests:

*Continued success for Eliana in eating.  Pray that her endurance would improve and that her desire for food would grow as well.

*Healing around her button and no infection.  Wisdom in knowing if/when she needs to be seen by a doctor.

*Catherine's family as they prepare to move and all of the difficulties in entails both physically and emotionally. 

*The hearts that are aching due to this move and the changes that will ensue.  It's going to be hard on our children too as they are used to running back and forth between our houses many times a day.  I was listening to Catherine's daughter reading a Bible story to one of my boys today.  She asked him questions about the story and personalized it with names of extended family and where they lived.  It vividly reminded me of how much we know about each other's lives - from having lived them side by side - not just Catherine and I, but our families as well as many other friends.

I've said these before, but I think I need the reminders.

The Lord giveth and the Lord taketh away.  Blessed be the name of the Lord.  Job 1:20-21

And we know that God causes all things to work together for good to those that love God, to those who are called according to His purpose.   Romans 8:28

Thank you for your prayers and encouragment.

With love,

Leslie

Birthdays ... how can they be bittersweet?

It's early ... well, for me it is.  My day ended late last night and began earlier than I wanted this morning with my 2 youngest boys up at 6am.  Everyone else is asleep even now 2 hours later.  Wish I was one of them.  I'm hoping a nap is in order later in the day!

Birthdays ... we celebrate 4 of them this week between Catherine's family and mine (mostly her family with 3 of them).  Her girls had a fun party yesterday.  As we were preparing - running errands, getting food and games ready - Catherine gave me a hug.  I know that the thoughts running through my mind were in hers too even though they were unspoken. 

We have done birthday parties together for so many years.  We even joked at times about starting a party business - sometime when ours were all bigger.  We have always helped each other - baking/decorating cakes (her for me), decorating, running errands, and anything else that needed to be done.  We've been celebrating birthdays together for 17 years now.  Our birthdays are just 3 days apart.  I counted in my mind that we have celebrated about 100 birthdays between us and our children.  We both can't help but wonder how this will change.  We'll find out soon as two of my boys have birthdays next month - just 6 days apart - like her girls. 

Oh, this probably isn't the best way to start the day - pondering, thinking and crying.  I don't understand God's timing in all of this.  I remember when Eliana was born how often I heard people remark that I was fortunate to have Catherine to walk this road with me (she also has a child with DS).  I know that she will still be there, but not in the tangible way that we are both used to.  Living beside each other has been an incredible blessing. 

I can't type more.  My heart just hurts.  Please pray for my precious friend as their move is drawing close.  Please  pray for our families as this is hard for our children, but mostly for Catherine and I.  I'll write more later about our week and some of the positives with Eliana's feeding.

Thank you friends for praying.

Love,

Leslie

 

Jesus Loves the Little Children

Just last night I was singing this old song to Eliana as she was splashing in her bath.  As I sang the first line, she broke into a her endearing grin.  It was as though she understood the words and her joy just spilled forth from her bright eyes to her toothless smile.  It was a precious moment.

It gave me time to reflect on some of what has happened in the last couple of days as I pondered the fact that "Jesus loves the little children, ALL the children of the world."  ALL the children.  Something the world hasn't quite learned yet - though something I see played out in my life everyday.  From friends that are parenting children with special needs to others that are adopting to others loving children daily in spite of their actions.  It's these sweet moments that I need to remember as they are ones that give me a glimpse of God. 

This song and others are ones many of us learned as children.  Jesus loves me is another one of my favorites.  One of my friends commented on this verse in a slightly different way, yet one that also makes a powerful statement. 

Jesus knows me, this I love.

Yes, He knows me - you - all of us.  And in spite of our mistakes and flaws loves us deeply.  I often tell Eliana that - Jesus loves you - even though at the moment she may not understand how much Jesus loves her!  The last couple of days have given me times to ponder this thought, especially when it is confronted with the fact that the world often does not love "all the little children". 

We visited the Down syndrome clinic on Thursday.  I was asked many, many questions about our family history.  I know that they are trying to understand, but honestly can any of us really know why God creates some chlldren differently?  Other than it being one more opportunity to give Him glory.  I know that some of what happens in this world is just a result of living in a fallen and broken world.  It is this backdrop of pain and suffering that really shows the love, compassion and grace of our Father.

I talked with a developmental pediatrician who was very nice.  She explained some of what they do at the clinic.  Our visit was short as we are already connected to many of the services that they provide from eye, ear, cardiology, physical therapy and occupational therapy.  The doctor told me we were doing a great job in getting Eliana the things that she needed.  It's always nice to be encouraged by a professional even though it isn't the approval that I need to seek.

She also talked with me about the blood test.  They will be testing her thyroid function.  It's been normal thus far, but can change and is often a problem in people with DS.  They will also be checking for leukemia.  Oh, just the mention of this caused tears to well up in my eyes - as even now they are there at the thought of it.  Seeing the hurt in my eyes, the dr commented that this was very treatable in children with DS.  It isn't a road that I want to walk - though it also isn't my choice either.

When we arrived at the clinic and I talked with a nurse, I told her I wanted to put emla cream on Eliana's arm to numb it in preparation for her blood draw.  She told me that wasn't a good idea as it constricted the blood vessels and made it harder to get a good stick.  She seemed so sure and yet, I do trust my ped who prescribed the cream.  I also know what it has been like in the past.  Painful.  Difficult.  Sometimes unsuccessful.  I wasn't insistent, yet sensing my concern she agreed to put it on her "best" arm.  She told me that she would do this since the vein looked good, but that the other arm would be a back-up if needed. 

When she went to have her blood drawn, the tech was able to get a good stick the first time.  The cream was working too as Eliana did not cry.  As we waited for the vial to fill, it was then I became thankful for the cream.  We waited and waited and the tech commented on how sloooowly her blood was coming.  I secretly prayed that she would not have to do a poke in another place.  We waited for a long time - maybe 5 minutes?  She did get it all.  Through the whole thing, not a peep from Eliana.  She did try to grab the tubing though.  That's my girl - great at pulling tubes.  LOL  So we had a successful blood draw with no pain for Eliana.  Thank you God for this answer to prayer!

We should hear the results from the bloodwork in a week or so.  This gives me yet another opportunity to just hand it over to God.  It isn't any use worrying about it as it won't change a thing.  If something is wrong, then we will deal with it when we need to.  I'm going to try not to borrow trouble as each day has enough of its own.  ;-)  So many lessons for me.  I wonder at times if I'm just not getting it and that's why I keep getting new opportunities.  I can be stubborn.  Either way, I hope and pray that through it all I will learn and God will get the glory.

Since we arrived at the clinic as the first patient, we weren't in the waiting room much and didn't have much opportunity to see others.  I had wondered if I might have a chance to talk with another Mom or meet another child with Down syndrome.  This wasn't the case though.  I did see children in wheelchairs and with a variety of other special needs and it hurts my heart.  It hurts for the pain these children experience as well as that of their parents.

A Mom on my homeschool board shared that she needed prayers for her hurting heart.  Her special needs daughter was being excluded and it was hard to keep her heart from becoming hard.  Other Moms of special needs children understood this pain.  The pain of having siblings invited to a party while one is excluded.  The pain of comments from others.  The pain of distance or even just the look from people who don't understand - and don't really want to either.  I haven't had much experience with that yet.

For now, most people think Eliana is cute.  I love hearing those comments.  I think she is so beautiful, though at first it was hard to see past her differences.  I'm sure that will be true of others as well.  Another mom of a baby with DS shared with me recently that she thought it was easier in some ways now - with a baby that is cute.  What is it like though when they are children and even more so into adulthood.  Those are things I don't need to worry about now, though I'd be lying if I told you that the thoughts never entered my mind.  It's often when I hear from other Moms who are hurting or when we do get an odd look. 

It's then that I try to focus on the truth that Jesus loves me.  Jesus loves Eliana.  He loves all of us - just as we are.  I wonder sometimes if my vision will change.  Will I be able to love more fully now?  Will I have more compassion?  Will I have a greater understanding of how much I am loved?  Will I have a greater knowledge of how much I need a Saviour?  I think so.

I love you, O Lord, my strength.  - Psalm 18:1

Let all that you do, be done in love. - 1 Cor. 16:14

With love to all of you,

Leslie