Week at a glance 7/9 - 7/13

Just an update on all that we have going on this week.  It's a busy week - at least the front end of it anyway.

Monday - We go to Duke for an Upper GI and swallow study.  Both involve ingesting barium and then having a x-ray to see the flow of the fluid and to determine if there are any problems.  There will be a feeding therapist there to help Eliana.  I don't really know how long it will take or any more details.  I'm hoping that she will eat and that the test will go smoothly and not cause any distress for her.

Tuesday - We have feeding therapy in the morning and then pre-op work for surgery in the afternoon.  I'm not sure what all is involved in the pre-op work.  I do know that they will be doing blood work which in the past has been difficult for Eliana.  I have asked several times if we could schedule the echo (this is an ultrasound of the heart) for this day (so that I don't have to make 3 trips to the hospital for pre-operative work).  The gal I've been talking to keeps telling me that the pre-op people (who is that?) will decide if she needs an echo.  Even though I've repeatedly told her that Eliana's cardiologist told me that she would need an echo before surgery, this doesn't seem to be enough to get it scheduled.  *sigh*  (Yes, I felt like I was banging my head against the wall on this one.)  I expect this to be a long day between going back and forth between the appointments.  Even longer if they decide to do the echo and Eliana needs to be sedated.

Wednesday - Eliana has physical therapy.  This is typically something that I enjoy - and Eliana does to a degree though it can be a lot of work for her.  I appreciate the encouragment that I hear from the therapist on how well she is doing. 

Thursday & Friday - NOTHING!  Yippee!!!  At the moment we have nothing planned for either day and I love that.  We'll probably hang out at home, maybe play with some friends.  Several friends have talked about getting together and that sounds like fun!

Today we went to a "Salsa walk" at a friend's neighborhood.  As I'm reflecting on going out, I think it was the first time we have been out as a family (except to church) since Eliana was born.  I should ask my other family members, but I think it's right.  (Eliana and I did join the family at an event for his work, though we weren't there the whole time.  This time we left and came home together - though in 2 vehicles since we don't fit in one anymore.) 

Typically Eliana and I stay home.  It has been too much to work around all of the feeding things.  It was a lot of fun.  It was nice to be doing something together - and away from home.  We brought a bag of chips and then walked around to various houses on the street to sample a wide assortment of salsa.  Each person had made salsa from things that they had grown in their garden.  Yum!  Oh and the varieties from traditional to fruit (strawberry, blueberry, peach, pineapple) to vegetable (cucumber, tomatillo, lime, avocado) were so much fun!  So many varieties that I had never before tried.  Really a delightful way to spend the evening.  One neat surprise was seeing my 5yo go to town on the salsa!!!  He ate some of all of them.  I think we have just found the way to get veggies into that little man.

We had a fun visit with my sister, bil and niece.  It was short (they came yesterday morning) but we were so glad to have them here!  The girls had fun playing "spa".  They gave my sister and I a spa treatment which included a shoulder massage, hair styling, rubbing lotion into our hands and feet and painting our nails.  Oh, and cucumber slices on our eyes.  It was a relaxing time.  They had so much fun doing this that they asked if they could visit some of the neighbors to offer a treatment to them too.  Here's a photo of the girls. 

I've been trying to upload a slideshow of 4th of July photos.  The slideshow is made, but I can't figure out how to get them into a post.  If I can't figure it out in a day or so, then I'll just post the link.   

Here are some of our prayer requests:

*That Eliana would swallow willingly for the swallow study.  I'm not sure how they get the fluid in if she is uncooperative.  Just praying that the results would be clear, that if there are any problems that those would show up and that it would be a quick and painless process. 

*Prayers that the person drawing blood would be able to find a vein that will work on the first try so that Eliana does not have to endure repeated pokes.

*For pre-operative work to go smoothly and that all testing that needs to be done can be accomplished on Tuesday.

*Wisdom for all decisions that need to be made regarding surgery.  We have a "tentative date" and it will be confirmed after seeing the results of the tests being done this week.  Once again we remain in limbo.  While it isn't necessarily what I would choose, it isn't so bad either.

*Peace for us as we wait and for our children as they deal with surgery, hospitals and unknowns once again.  Also that we would listen to God and all that He has to tell us as we wait, wonder and walk through our days.

Praises:

*Fun time tonight with family and friends!  It's been a long time and it was a sweet and simple time.  We are used to having many times out together exploring and having fun and I am thankful that we had an opportunity to do something that fit perfectly in between feedings and was close to home too.

*Good health for our family.  This is especially nice given how often we have been in and out of doctor offices and the hospital.  I'm thankful for Eliana's continued health.

*Family.  How fun it has been to have both of our sisters and their families (though we missed our nephew!) here this week!  A treat for all of us.

*Friends.  We are richly blessed in the friend department.  I thank God for the many,  many people that have walked with us - both in real life and also via the internet. 

 

As I prepare for the week - with surgery looming once again - I can't help but reflect on how this compares to the last time we were preparing for surgery.  Those of us with "cardiac kids" talk about what it is like on "this side of surgery".  It is soooo much better on this side!  It was so very hard being on the other side.  It isn't that this side is easy, but it isn't as scary.  Maybe it is easier because we have to learn to trust God, to let go of things we have no control over anyway, and to relax in His love for us.  Maybe it is easier when we see our little ones come through an incredibly significant surgery with flying colors (though it unfortunately isn't that easy for everyone).  It's probably some of all of this.

I know that no matter what our day holds, that God loves me.  He knows where I'm walking and what I'm going to encounter.  I pray that I would listen so as not to miss the opportunities He has before me. 

Thank you for standing with us dear friends,

Leslie

Ped update

I have a couple of praises regarding feeding - yes, feeding!  Last night Eliana ate almost 3 ounces in one feeding!  It has been a long time since she has done this well.  We are doing good on some days to get in ONE ounce in the entire day!  The feeding took a long time, but she was comfortable and willing so we just kept at it.  It made me wonder what it is that keeps her from doing this on a more regular basis.  I could pinpoint nothing different.  I am encouraged that she is able.  I am hoping that getting the NG tube removed will help her out.  I do think that is the source of much of our problems.

Speaking of removing the NG - Eliana did that again today during a feeding.  She ate about one ounce - really good for her now - then had an ounce via the tube before pulling it.  I tried the bottle and she took another ounce.  Yippee!!!  I was excited to see this amount.

Eliana's skin is looking badly again.  She has taken to rubbing her face often - on her hand, against my shoulder when I'm holding her and against the blanket when she is on her tummy.  This causes the tape to come off - or part of it - and typically requires me to remove the rest of the tape and redo it.  Her skin is looking like it has a couple of times in the past.  I decided to leave the tube out for a couple of feedings to give her face a break.  If you think of her, please pray for healing for her cheeks.

During the break we visited the pediatrician.  We were welcomed by several of the staff.  They knew us by name (I was surprised by that) and commented on how they hadn't seen us in a while.  (It's been 1 month.)  It does feel like a while and yet it's only been a month!  I've always enjoyed being known by the staff at my OB/midwife's office as I'm in there weekly (or more) for most of my pregnancy.  I've never been one to visit the ped office much at all though.  There are many, many things that I've been very comfortable doing with my other children that I'm not able to do with Eliana.  It has challenged me in many ways - some of them ways I didn't want to be challenged.  I am thankful for the things I'm learning though and know that Eliana is a precious gift to our family and many others too.

Dr L was pleased with how Eliana is doing.  With the exception of feeding she is really quite healthy and progressing well.  She had several things to share that were encouraging.  (She is very encouraging to me and I think that this is one of the reasons that I really enjoy going to the ped.) 

• Ears -  When she peeked into her ears, she commented on the first ear that she could see good reflection of light.  (This is a good thing!)  This was the left ear - the one that has repeatedly failed the hearing test.  Thank you God!  The other ear looked good as well.


• Muscle tone - She commented that while Eliana does have low muscle tone that it really isn't that bad.  She is doing things well like keeping her hands in mid-line (in front of her body) and rolling over.  This will be a great blessing to her for many things.


• Height and weight - Eliana weighs 16 lb and 6 oz and is 26" tall.  In looking at the growth charts, Eliana is plotted on two different charts.  There is a chart used by most children and on that  one she falls at about 55% in both catagories!  On the chart for children with Down syndrome she falls at 80% for height and 90% for weight.  Dr. L was quite pleased and said that this is something that isn't seen all too often.

Thank you God for these encouragments.  It is so comforting to hear encouraging words from others.  Be it something small or something big - it is just a blessing.  I want to encourage you to take time to share something positive with the people you love, friends, family and even strangers.  We can all use a little more blessing in our lives! 

We had to replace Eliana's tube tonight.  For the first time, she seemed to know what was coming.  To begin the process I wrap Eliana in a blanket to keep her arms and legs from thrashing about.  As I did this she started shaking her head "no" - over and over again.  She didn't fuss, just kept shaking her head back and forth.  It did go in, but it just isn't ever easy any more.  I'm looking forward to knowing that I've done this for the last time.

I have more to share on the upcoming week as I've scheduled a variety of things.  It will have to wait though as it is late and my sister and her family are coming for a visit tomorrow.  :-)

With love,

Leslie

 

Quick update on upcoming surgery

On Monday (July 9) at 10:30am Eliana will be having an Upper GI to check for any malformation of her intestines.  None of us think that there are any problems there as there is no evidence to indicate problems.  The surgeon needs to know this prior to surgery as he would try to fix any additional problems while he was "in".  As best as I understand she will have some sort of liquid/formula with barium in it put in to her tube.  They will use an x-ray to see how the fluid travels through her body. 

She will also be having a swallow study done.  This also involves barium in her formula, but clearly she will need to swallow this.  There will be a feeding therapist there to help her, though it isn't "her" feeding therapist.  I am praying that she would eat enough at that point to give them the information needed to see her swallow.  Any problems with reflux (not making it completely to her stomach and/or coming back up which would irritate her esophagus) or aspiration (going down into her lungs) should be able to be detected.  Again, we see no signs of this outwardly, but are checking to be sure.  She is currently taking Prevacid to help in case she is having reflux.  If there are no signs of this on Monday she will stop taking this med.

She will need additional pre-operative work done next week.  I'm not sure when all of that will be done.  I was asked if we wanted to do all of this in one day, but that seems like a lot for Eliana.  I'm guessing she isn't going to be too happy about the GI/swallow and to add blood draws and a sedated echo (to check her heart) would be a lot in one day.  Since we live close to the hospital, coming another day isn't a huge problem for us.  We are still tentatively scheduled for Tues 17 July for surger.  This might change depending on what the pre-op testing shows. 

Hmmm ... this is kind of a boring, factual entry isn't it?!  I appreciate all of the encouragment ya'll have given me about the last entry on "the bow".  An interesting aside from all that I've been through with Eliana has been this writing.  I've never been much of a writer.  I've kept sporadic diaries or journals, but have never been consistent.  I didn't find the time to do it and didn't really "get" why people would want to blog either.  I just didn't  understand.  The one area in which I have written is in my scrapbooks.  I do a lot of journalling there as I do love having the whole story to go with the pictures. 

Also in terms of the ability to write, I've never had any confidence about my skills.  I don't remember much about writing in high school.  I certainly don't remember ever being  praised for anything I've written.  My senior year I took some test (don't remember what it was) that was given to people in the honors English class.  I wasn't in the class and am not sure why I was allowed to take it.  Anyway I scored well enough on the test to be able to skip the freshman English/writing class in college.  My score wasn't "high" - it was just high enough to exempt out of the class.  I always felt that I had "gotten away" with something.  That somehow I had tricked the system.  This led to me having great doubts about my ability to communicate through the written word.  I've since thought that while I can typically communicate clearly that my writing is just that - clear but not really any good.

Now, reading that last paragraph maybe I'm right.  LOL  My grammar skills aren't the best as I really don't understand the technicalities behind all of the parts of speech.  When I write I just try to put my feelings down on paper (or screen).  I'm not trying to write anything amazing, but just to share my heart.

I'm not sure I explain what having this blog has done for me.  It has brought me comfort and hope in the forms of prayers and encouragment from so many people.  I've gained information on a variety of medical issues that we are facing.  I've also gained some hope in my ability to share my thoughts and feelings.  Just writing through my emotions has helped me.  It has been good to get everything out.  I believe too that being able to look back at this journey will be something I treasure.  The details that I might have forgotten are saved.  I'm thankful for this forum and the opportunity to share.  I'm thankful for you dear friends that care about Eliana and our family. 

My heart is full and I am very blessed.  Maybe ... maybe one day I'll consider writing a book.  That seems pretty far out of my comfort zone though.  It would have to be something God really impressed on my heart as I have no idea how to even begin to do that.  For now, I am thankful to know that my experiences and emotions as we walk this new path are something that does occasionally serve to encourage and bless those that are sharing it with us.  How good is God that He would use me?  It humbles and amazes me that He would do that.  It encourages me to see how He orchestrates the details in my life and in others so that we can see His hand at work.  I'm thankful to know that He loves me and that He uses so many other people to show His love to me every day.

With love,

Leslie

The Blessing of a Bow

 

When Eliana was being born, one of the first comments I remember the OB making was to say that our baby had hair.  I told her that "I didn't have babies with hair".  She replied, "You do now!"  It's funny now, but when she was born I had a hard time with her having hair.  It just seemed that it was one more way that my daughter looked different than I had expected.  It didn't help that it stood straight up!

I remember going to the newborn nursery (they wouldn't bring her out to me) and before they brought Eliana to me, the nurse apologetically told me that she had washed Eliana and combed her hair, but that as it dried this was what it looked like - straight up in the air!  Not the cute bald baby I was used to having.  With all of the other struggles at her birth, I didn't really appreciate her hair at first - in any way.  Seems silly to be saying that now, but it's true.

Shortly after Eliana was born, a sweet friend wrote to ask if she could send me bows.  She commented that it was a "law" in Georgia that little girls needed bows and wasn't sure if it was the same here.  LOL I had no experience with bows!  Rebecca (and all of the boys) had been "bald" and had very little hair at all until past a year of age.  Of course the boys never needed a bow.

Soon a package with an assortment of cute little bows arrived and I began putting them in Eliana's hair.  I liked the way that they looked.  So cute.  Little by little the hair began to grow on me.  I wasn't really sure what to do with the hair other than clip a cute little bow in it.

During her first stay to the hospital at 7 weeks of age,  she wore her bow.  People remembered that bow and commented on it - even months later.  It was memorable.  It became a sort of trademark for Eliana.

When she went into surgery at 4 months of age, she wore her bow.  I took it out during pre-op.  I had thought about asking if she could keep it in, but didn't want to impose and wasn't sure if it would hinder things either.  While she was in surgery, I remember holding on to her little bow, stroking it and longing to be holding her.  When she was out of surgery, I asked and was allowed to replace the bow while she was in the PICU. 

The day after surgery when they had to put in a new IV, they could find no veins in her  poor little body so that had to put it in her head.  They used her bow to help cover it up.  Actually it was clipped to half of a  cup that was placed over the IV line.

Eliana continued to wear her bows - almost every day.  At 6 months, she began pulling her tube with increasing frequency.  It got to be at least daily and sometimes several times a day.  I was thankful when she didn't pull it completely out and I could just push it back in.  The constant need to put the tube back in was stressful to her and it was really causing damage to her face.  (From the tearing off of the tape.)  Her cardiologist suggested that we tape the tube up her nose - and we did.  We used the bow to hold the top of the tube to the top of her head.  Otherwise it dangles just in front of her eyes.  (A moving target that is easier to grab!)

One neat thing about these bows is that there is a small hole/opening at the end of the clip.  It is just large enough for the feeding tube to fit inside of it without  pinching it.  None of the other bows that I've seen locally are made like this.  It is just perfect!  Isn't that just like God to be in the details of something as small as a bow?!  Without the bow to hold the tube I'm not sure it would have worked as well as it has.  Clipping it to the top of her head keeps it out of her face and away from her hands.  Oh, and the hair.  It really has helped that she has hair otherwise there would be no way to use the clip on the bow.  Again, the small details.  God is in them all!!!

Why am I surprised?  He knows the hairs on my head, why would He not care to provide just what she needs -   hair and a cute little bow.

With love,

Leslie

This week at a glance

Just thought I'd share again what our week is looking like.  I like being able to think ahead a little bit and I'm hoping that it helps others too in terms of knowing what is going on here and how to pray for our family. 

Monday - I will be calling to talk with the surgical nurse.  I will be sharing that the ped does want the swallow study done.  Hopefully we will be able to schedule that tomorrow as well as any other pre-op work that needs to be done.  I have a lot of questions about the testing and what it involves.  One of the feeding tube loops that I'm on has given me some information about what to expect with the various tests.  If anyone has other suggestions on questions I should be asking - please share them!

Tuesday - The cousins will be returning from the beach.  They left this morning to visit there for a couple of days.  My children commented that it wasn't hard to say good-bye this time since we will be seeing them again so soon.  They have had a great time together!  I am hoping to share some pictures maybe tomorrow.  I really need to learn to download photos.  

Some of the fun things that they have done so far include going to the library, going on a geocache, shopping, swimming, water balloon fight, kickball, watching a movie and beading bracelets.  Oh and how can I forget - a "Cousins party".  They all helped to decorate a portion of two cakes with frosting and sprinkles.  Everyone got to blow out a candle on his/her cake and open a small gift.  My sweet SIL arranged all of this and the kids had a blast!  Eliana and I haven't been involved in much of the activities due to the feeding pump limiting our time out of the house, but we have enjoyed having them here! 

Wednesday - Hmmm ... what are we going to do to celebrate the 4th?!  I don't know.  We typically spend this time in the mountains with my parents and have our own traditions that we enjoy there.  We need to make some plans though to enjoy the day here!

Thursday - We will say good-bye to the Bakewells.  It will be hard to see them go.  Daniel cried the last time he had to say good-bye to his Aunt Karen.  It has been wonderful having them here to visit!  We sure wish that they lived closer.

Eliana will have physical therapy in the late morning.  Hopefully this will work better with her sleep schedule (or lack thereof).

Friday - Eliana has an appointment with her ped.  It's been a month and we are looking forward to seeing her.  We've talked on the phone several times - and emailed some too.  She really is a blessing.  We'll be talking about the  upcoming surgery.  Unfortunately, her ped will be out of the country when Eliana is scheduled to have her surgery.  Not sure there is any way around this though. 

Saturday - No plans ... yet. 

Sunday - Meeting with some friends to help plan field trips for our homeschool group for the upcoming year.  We like to plan everything out a year at time so that we can plan and then just enjoy the year.  We schedule field trips to coordinate with our curriculum in some way.  It's a wonderful group and we are so thankful to be a part of it!!!  This sweet group of friends has been a tremendous support to me and my family!

I have more to write - and will try to write more tomorrow and add some photos as well.  For now, it's late (2am) and Eliana is finishing her last feeding.  Going to church (or anywhere) always throws off her schedule.  As I was listening to my friend Rebecca talk about something in her home tonight, I realized that I had not been in anyones home, except Catherines next door, in over 6 months.  I know that we really haven't gone anywhere, but the realization just hits me some times in different and odd ways.   This has been an isolating time in many ways.  I am thankful for the friends and family that have come to us - and for the many dear people that I'm connected with via the web!  (I wish I had time to write all of you!) 

I have two additional prayer requests:

Please pray that Eliana would not have reflux.  We don't think that she does, and it would be nice to have that confirmed.

Please pray that her intestines would be properly formed and not twisted in any way.

Thank you dear friends!

With love,

Leslie

Surgical update - tentative date!

Our appointment with the surgeon went well yesterday.  He and his staff are very nice!  He is outgoing and friendly and very easy to talk with and ask questions.  We were asked a lot of questions about her history and why we wanted a G-tube.  It almost felt "elective" and I guess in some ways it is, though it isn't really like we have a choice either.  The doctor said he could do the G-tube "if that was what we wanted'.  I told him that if he had other suggestions that I would be willing to try them.  He commented that it looked like we had tried everything.  I feel like we have.  I want to be thorough and at the same time find guidance from the many wonderful people God has placed in our path.  I am very thankful that I feel we have had excellent medical care.  Perfect?  No.  I do think we have all done our best though and I have no regrets.  Perhaps with hindsight I would have done things differently, but isn't that always the case?

The surgeon wants to do an Upper GI to rule out any twisting (there was another word) or other problems in her intestines.  He didn't think we'd find anything, but just wanted to be sure.  He also said he would be willing to do a swallow study if the pediatrician or feeding therapist wanted them done.  He wanted to find out this before scheduling them as apparently it could be done at the same time.  I'm not sure of all that either involves - though know that I need to find answers.

I told him I didn't think she had reflux and offered to have him watch her eat.  He said he was just planning to take my word for it.  Arching her back is what I'm asked about.  She pulls back but not in pain, but more as a signal that she doesn't want it!  She did the same thing there.  It had been over 4 hours since she had last eaten and she took a couple of sips, swallowed and was done.  *sigh*  My poor little girl. 

We have tentatively scheduled surgery for Tuesday 17 July.  She will need to undergo the testing mentioned above in addition to some cardiac work  prior to her surgery.  The surgeon thought we would be in the hospital 2-3 days.  He also said that in comparision to the cardiac surgery she has already had that this would be much simpler.  The surgery itself lasting about an hour.  The date will be dependant on being able to schedule all of the other necessary testing  prior to this day.  Since next week is a holiday for many it pushes things back a bit. 

The type of G-tube he will be using is called a BARD.  He thought that the open incision was a better route for Eliana than a laproscopic insertion down her throat.  I couldn't agree more!!!  I don't want her to have anything else negative happening to her throat!  There will be an incision through the skin, abdominal wall and into the stomach.  The tube part that is outside of her body will lie flat and is more secure. 

If you want to read more information, here are a couple of links I found late last night.

http://www.pedisurg.com/PtEduc/Tube_Feeding.htm

http://www.opitznet.org/daily.html

One of the most encouraging things that I heard was that "often feeding really takes off" after getting a G-tube.  That is my hope and prayer for our little sweetheart. 

Prayer requests:

• Wisdom in knowing the tests she needs prior to the surgery.


• Health for Eliana and the surgical team/nursing staff.


• Successful operation with no complications.


• If there are problems affecting her ability to eat that they would be found.


• Pre-op testing to go smoothly and to indicate any problems that might exist. 


• Ability to eat.  I really want this to improve so that we can move to a more normal method of feeding.


• Peace as we wait ... and wait ... and wait.  Waiting is never easy.  I'm trying to just fall back into God's loving arms and relax.


• Boldness.  I missed an opportunity yesterday to share how much God has carried me through all of this trial.  I feel badly for just blowing it.  I don't know why I just chickened out - though I did go back and share that I was remiss in not stating it the first time.  What a disappointment for me to see how weak I still am.  Yet, what sweet comfort to know that He is there - waiting for me - loving me in spite of the times that I fail over and over again.  What a comfort to know that He is strong.  All the time.  In spite of my weakness, He is able to do great things in and through my life.  Thank you Lord!

We still have many questions about what the G-tube will be like.  I keep hearing over and over again that it is so much easier than the NG tube.  The NG has been hard.  I feel like I've been confined to our home for much of the last 6 months in addition to the difficulty of placing it over and over again.  I have a series of pictures of the care involved in the NG.  If can remember, I'll try to post them.

Blessed is the man who perseveres under trial, beause when he has stood the test, he will receive the crown of life that God has promised to those who love him.  James 1:12

With love,

Leslie

Eye Appointment, PT and more!

More to update today.  We had eye appointments this morning for Christopher, Joshua and Eliana.  We have been visiting this eye doctor for 10 years.  She commented that she thought this was the longest we'd gone without seeing each other - 6 months.  We have been there a lot over the last decade!  

Christopher got fitted for contacts.  He tried them last summer and couldn't get them to work for him.  He has done much better with them today.  It's amazing to me how different he looks without his glasses.  I think he is pretty excited about them.  He bought a  pair of sunglasses tonight and commented that they were his first pair.  I took a photo of him and will try to download it sometime this week-end. 

Joshua didn't do so well on his eye exam.  He has actually lost some of the vision in one of his eyes.  :-(  He is nearing the age when corrections won't be possible as the eye stops growing around age 8.  We are supposed to do more patching.  We haven't been as consistant as we should have been the last 6 months and really need to be diligent about it now!

Eliana had to get drops which she was not happy about.  I told the doctor that I wanted to hear that Eliana did not need glasses.  She said, "Well I can say that to you".  (This was before examining her.)  They thought she looked good in terms of being equal in both eyes and tracking.  Eliana wasn't the most cooperative by the time it came to be examined.  It took me holding her and the doctor prying open her eyes to get a peek at them.  Eliana is a little far-sighted, but does not need glasses.  I asked if she would definitely need them and the doctor wasn't sure.  She said that Eliana might grow out of it.  Oh, that is my hope and prayer!  

I feel like this is yet one more time that we are going to be in limbo ... waiting.  There has been a lot of unknowns ... wait and see ... wait until ... wait.  Is this my test?  Learning patience while waiting?  I think I'm doing better.  I've been surprised at times that I was alright with the waiting.  In all of this, we have had no control and so in some ways that made it a little easier to just rest in God's perfect timing ... and wait.  At other times though it has been hard.  Going into the eye appointment I was hoping and even expecting to hear something one way or another about Eliana needing glasses.  I wasn't expecting this.  It's alright though.  I'd rather hear this than to hear right now that she needs glasses.  

Physical therapy went well even though Eliana was very tired.  She had a hard time napping today.  It's fun to watch her learning and doing new things.  It's also really fun to see her therapist get excited about the things that she is doing.  It gives me a fresh perspective on her skills and accomplishments that I really enjoy!  I am thankful for this encouragment - and that too of a dear friend that writes often to cheer me on and to applaud each step of progress that Eliana makes.

I talked with someone at the Duke Development office today.  She was very excited about what Rebecca has done and is looking forward to making a "big deal" out of her donation.  I'm excited too - and proud of what she has accomplished.  We decided to wait until she was a little closer to her goal of $5000 and then we would start setting up a time to formally give the money.  Rebecca has been working diligently this week to build up her inventory again.  Additionally, several friends have written today about  Rebecca's bracelets offering help or wanting to buy a bracelet.  I continue to be thankful for the response to her efforts. 

Tonight Roger's sister and family have arrived.  We were very excited to see them and the children stayed up late to welcome them here!  It has been a long time and we are looking forward to getting to know each other again and having fun too!

Tomorrow we will be meeting with the surgeon to find out more information about the G-tube.  I appreciate your prayers for wisdom in knowing questions to ask and for any decisions that must be made.  I will update as I am able.

With love,

Leslie

Wholehearted Update

Hi Friends,

I wanted to update on a couple of things and then hopefully share some pictures. 

FEEDING - Today went well.  Eliana had a feeding therapy appointment this morning.  She ate some solid foods - and actually swallowed it.  She tried bananas and seemed to like them.  She also ate some rice cereal.  She wouldn't take anything from the bottle however.  The therapist used a syringe to put some in her mouth so that she would have to swallow.  She noticed that she was having a hard time swallowing and thought it might be worthwhile for Eliana to have a swallow study done.  She is planning to talk with someone about this for us. 

Later today she actually had two feeding that were much better then the last several days.  She has been eating 5-10cc (1/3 of an ounce) on average.  Today she had two feeds where she ate 40cc.  That is close to 1.5 ounces.  Still far from where she  should be - but at least she is improving.  For several days she has taken close to nothing.  I'm hoping and praying she will continue to improve.  I'm not sure it will change anything with the G-tube, but it would still be nice.

WHOLEHEARTED - Rebecca took off about a month and a half from making bracelets.  We had an incredibly busy time prior to May and she needed a break to finish up some other projects.  She has been working hard this week making bracelets (a lot of red, white and blue patriotic ones) and even some earrings and necklaces too.  She is working on building up her inventory so that she can try to reach her newest goal.  Remember the wild, dreaming, out of reach goal that she set initially  - well, she is getting close!  Her goal is $5000.  She is currently at $4078!

I'm not sure if I mentioned this in a previous entry and thought I'd add it here.  Rebecca has had so many people respond to her story in many different ways.  It has been a blessing to our family to see how others are touched and want to join in.  We have had people make donations of money, beads and gift certificates to buy more craft supplies.  We have had friends donate time in helping to make bracelets.  We also had one sweet little 7yo girl decide to make and sell bracelets on her own to help Rebecca.  She heard the story and her heart was touched and she even donated some of her own money to the cause in addition to the $55 she raised selling bracelets.  We have had others volunteer to help sell bracelets, but thus far haven't been able to take them up on their offer as we haven't been able to keep up with demand here.  That is a good problem to have.  One other person's response that touched my heart was my 7yo son donating $10 of his own money to help his sister's cause.  All of this is one more example to me of the body of Christ - working together to bless other families that are facing a medical crisis like the one we have faced.  We are so thankful that our daughter has a whole heart!  I am even more thankful for the healing God brings to all of our hearts. 

I called today and spoke with someone at the Duke Development office.  (The same gal I spoke with in March.)  She was surprised and excited to hear about Rebecca's sales.  The last we had talked she had wanted to reach $1000 before donating the money.  She wanted to have me talk with someone there about the publicity and how the donation would be handled.  (I'm expecting a  phone call tomorrow.)  I am excited that they are wanting to make a big deal out of it!  It will be a challenge for Rebecca to be the center of attention as she is quiet and a little shy.  I think it will be good for her though and know that she will rise to the occassion.

I know that I've promised pictures of her bracelets and have some to share.  I'm not sure that the pictures really do them justice.  She does beautiful work.  Most of the bracelets she makes are out of memory wire with 2-3 coils.  These are sold for $10.  Many (but not all) of them have metal hearts on them.   Here are a few that she has made in a variety of colors.







(She probably wouldn't want me to show these earrings as she can't duplicate those right now.  I just liked the picture of the bracelet.) 







Tomorrow (Thursday) is a big day!  We have eye appointments in the morning.  I've been praying that Eliana's eyes are fine.  Part of me feels silly as they are what they are - and yet, I'm hoping that they will be fine.  That I will hear that she does not need glasses.  It is a hard thing to hear that your baby can't see.  And a very hard thing to teach a baby to wear glasses.  We've done it before - and I'm just hoping not to do it again.

In the afternoon, Eliana has a physical therapy appointment.  These are usually fun.  The therapist comes to our house which is really nice!  Eliana likes to move and it helps to have exercises and games to do with her to help her muscle development.

In the evening we will be welcoming our cousins/aunt/uncle!  We are all very excited about seeing them and spending time together.  It's been a long time since we have been together.

In closing, I've been reminded again today of how much God loves me.  He shows me over and over again.  He has used many people to love and encourage me.  He has carried me when I was too weak to walk.  He has shown me that He is faithful and that He is always with me.  He loves you too!  You are so precious and beloved to Him!

With love,

Leslie

Our Week - 6/25-6/30

I thought I'd share a quick look at our week ahead.  We have a lot going on and would love prayers on some things too.

Monday - My house is CLEAN!!!  I love it!  It is so nice to look around and see clean.  It happened in about 2 hours as 3 gals swept in and cleaned it all.  This was a gift from some of my friends and it is soooo nice!  I wish I could do the same in keeping it clean.  I probably should have done a better job in training my children.  No guilt now though - just going to enjoy my clean house. 

We also got naps today - well 5 of us did anyway.  :-)  I was very happy to be one of them!

Tuesday - We have no plans!  I've always appreciated days like this and think that I will come to appreciate them even more given all the many, many appointments we have had for Eliana over the last 6 months.

Wednesday - Feeding therapy in the morning.  Eliana is eating some solid foods now.  I am trying one meal per day and may up that soon.  Yesterday she had  applesauce and seemed OK with it.  She doesn't really seem to like it or dislike it for that matter.

Bottle feeding is horrible.  She will often take one swallow - and then not be willing to take any more.  I'm not sure if it's pain or what.  I just see no improvement at all.

Thursday - Three of my children have eye appointments including Eliana.  It's her first one.  I'm really hoping and hoping that she has no eye issues.  For those that have seen pictures you know that all of our boys have glasses and some significant vision issues.  Rebecca has had some mild vision issues and wore glasses for a short time to help prevent any deterioration of her vision.  (It was 20/30 in one eye I think.  Not enough of a problem that she even really noticed.)  The interesting thing is that neither Roger or I wear glasses.  We obviously have something on one of the genes though!

I know that children with DS can often have vision problems related to that.  I'm just hoping/praying that she doesn't.  I really don't want to have to deal with glasses right now.  I know that if she needs them that we will do it, but I just don't want to.  I want her to have a break with something. 

Christopher is hoping to get fitted for contacts then.  We tried briefly last summer but he seems more motivated now. 

In the evening, Roger's sister and her family will be arriving from  Nebraska to stay for a week.  We are very much looking forward to having them visit!!!  It has been a long time since the cousins have seen each other and our nieces haven't yet met Daniel or Eliana. 

Friday - The appointment with the surgeon - or someone working in surgery - to discuss the possibility of a G-tube for Eliana.  I'm starting a list of questions.  If any of you reading have ideas or suggestions, please let me know!  I'm hoping that we will have more information after this meeting.  I'm not sure what all will be done at that meeting.  I know that we are supposed to take her in on an empty stomach.  That won't be hard since she doesn't really fuss for food.

Saturday - Fun with our cousins/aunt/uncle!  Not sure what we'll be doing yet.  I'm sure it will be fun.

We would love prayers for the upcoming appointments for Eliana - eye and surgery.  Prayers for clear answers, wisdom for the doctors, discernment for us for any decisions that need to be made and for the best options for Eliana to be what is available to her.  I will update as I can.  I'm looking forward to the appointments but also a little anxious about what we will hear.  Thank you dear friends for standing with us in prayer!

Love,

Leslie

PS.  I typed this earlier in the day and was waiting to post to add in a picture.  I didn't realize that I'd also have a bit more news to share.  #34 was tonight.  That is the number of times I've put in her NG tube.  Christopher even asked me if I thought I could get a job as a NICU nurse after my experience with Eliana.  I laughed - there is way more to that job that I know how to do.  Though I know a lot more about it now than I did 6 months ago. 

Here's a photo of Eliana from last Thur - the last time she pulled her tube.  Tonight I found it pulled after she had been sleeping on her tummy (she rolled over while sleeping) and then rubbing her face on the mattress.  So even the really great placement up the front of the face is not too tough for our little girl.  Thankfully it still stays in much better there!

Birthday Party

Just a few notes on our sweet boy's birthday!  We worked on the list trying to get as much done as we could. 

Roger and the children went to the party store to pick out balloons and paper goods.  Daniel selected a firefighter theme.  I couldn't believe it!  I've been trying to talk one of the boys into this theme for years thinking that it would be such fun.   Go figure on the year when we are really doing nothing big - they pick the theme that I wanted. 

Lunch out at McDonalds.  It's Daniel's favorite spot - though he only wants to eat the french fries (and have chocolate milk to drink).  Watched a show in the afternoon.  Played at the park in our neighborhood.  Did get to play with the keys.  (Not sure why he likes these so much!) 

 

We made the cake and decorated with streamers and balloons.  We had a few friends come by.  My 5yo was especially disappointed that we hadn't invited more friends and I really couldn't help him understand that I wasn't up to a big party - and it didn't matter to Daniel.

Daniel opened his gifts.  Everything was a hit from a red car to a pirate book to the Lightning McQueen flashlight.  We gave him a wagon.  When the gift was brought in it was covered by a large blanket.  Instead of pulling the blanket off of the gift - Daniel just crawled up under the blanket. 



Next we had cake and ice cream - chocolate cake with chocolate frosting.  Boy was he happy about this!  He blew out the candles (6 of them because they were all cute and I thought I might as well use them all.)  It took a few tries to get them out, but he did.

Finally we went outside.  Rebecca had helped me plan a few games - a search game for firefighter figures and vehicles and a relay with water ("Bucket Brigade").  Daniel wasn't interested in either but rather just wanted to ride on the jeep.  He likes to ride fast too!  One day Roger cut the speed down to slow and Daniel put his head on the steering wheel and cried.  Oh boy, we may be in trouble in another 12 years.  LOL



That was it.  A simple day, but lots of fun too!  Maybe I should rethink having elaborate parties. 

Blessings,

Leslie