Day 7 (Wed) on the sickness

Hi friends,

***This was written very late on Tuesday night/Wed morning. 

Thank you for your prayers and encouragment.  I appreciate both! 

I'll start with the good news - Eliana is smiling again!  It's so heartwarming to see her beautiful smile.  I love to see her face light up and just radiate happiness.  She is a doll!  I'm taking her smile to mean that she is feeling better.  Yippee!  I wish I had a new picture to post.

This is DAY 7 of being sick.  She still has diarrhea - that's a long time!  Her bottom is still very red, sore and bleeding (though it seems to have diminished some this evening- Tues).  I keep thinking that it's got to end soon!  Usually these bugs last 24 to 48 hours, not days on end.  I'm thinking my friend RK is right - probably the rotavirus - which would explain why none of the rest of us have gotten it.  Our poor sweet baby. 

She is also not eating well.  She has not taken a full bottle at a feeding for awhile now.  She did better today than yesterday - but yesterday was not a good day.  She took about 5.5 ounces orally.  I obviously tube-fed her.  I'm thankful to have this option as I know it will help keep her home (instead of the hospital - not that you can always avoid this either!).  I'm trying to to be discouraged or worried about this set-back, though I'd be lying if I told you it hadn't crossed back and forth across my mind. 

I had someone comment today that I seemed like a wonder woman - and I have to say I am NOT a wonder woman!  I fail and fall down over and over again.  I hesitate to comment sometimes on my failings.  It's not that I want to be seen as perfect - I'm not even close!  I guess as a homeschooler I've heard too many stories of people that are falsely accused of not caring for their children properly and I would never want people that think that is going on in our home.  I love our children deeply and am very invested in their lives and their schooling - but I still fail and don't accomplish all that I would like to.

I thought today of posting that I was still in my sweats at noon - the sweats that I'd slept in after having been up until 4am.  (Thankfully I was also able to sleep in.)  I thought about sharing that I hadn't done any schooling with my children other than reading the Bible to them until then either.  Should I keep going and share how I lost my patience when they were loud and fussing with each other.  *sigh*  Things got better after lunch and we were able to get some good schooling in. 

I sometimes wonder who is going to learn more on this homeschooling journey - my children or me.  I'm almost certain it's going to be me.  I'm learning every day that it's not about me.  I'm learning that on my own, I certainly can't accomplish anything worthwhile.  I'm learning how much I need my savior - and His love, patience and wisdom each and every day. 

For it is God who is at work in you, both to will and to work for His good pleasure.  Phil 2:13

I remain thankful,

Leslie

Monday update on Eliana

Well, things are better - and a little worse.  Overall, she is healing from whatever nasty bug she has gotten.  Thankfully, nobody else has come down with it.  RK, I think you are probably right on what it is - rotavirus.  Not sure we'll know for sure (though they did do a stool culture, so maybe?).  Not that it matters at this point in terms of  treating it.  She is not vomitting, is able to eat some and fever has subsided.

The worse part is her diaper rash.  It's red and bloody (at times - not all the time but getting more frequent).  Poor sweet baby just cries when I lay her on the changing table.  :-(  She is sounding hoarse from her crying too.  It's so hard to have a little one in pain and feel that you can't do anything about it.  At least this pain is something that *I* can tolerate as I know it will get better.  When she was in pain after her heart surgery - that was scary and very hard for me to handle.  (I know it isn't about me, but as a mom I just want to take away her pain.) 

Anyway, I'm trying a variety of tips and tricks I've received from friends and hoping that some/any of them will help.  I've spent much of the day trying to help - and consequently my house is a WRECK!  We've gotten no schoolwork done - except the Bible lesson that Rebecca did for the little boys.  Guess a day off is good for all of us.  Oh, and speaking of Rebecca - she made all of us breakfast!  A beautifully decorated table and delightful smells greeted me when I came downstairs.  She had made french toast, fried pepperonis, breadsticks, fresh fruit and juice/milk for all of us.  What a sweet way to start the day!  Oh, and it was brunch which was even nicer for me since I got very little sleep last night as  Eliana was most uncomfortable.

I spent a good part of the afternoon trying some tips to help with her diaper rash.  I was told that rinsing instead of wiping and letting her have a good long soak would help.  So we tried this.  I had just spent several hours trying to get her to eat.  :-(  I thought getting her comfortable and then tube feeding her seemed like a good choice.  After her bath, I laid her in her crib and let her "air out".  I tried hooking up her tube which she did not want!  She tried pushing my hands away and cried for me to stop.  I did finally get her hooked in though.

After starting her food, I soaked a cotton ball with mylanta (to help with the acid) and dabbed it onto the diaper rash.  I continued to let it air dry.  I tried doing some laundry in between - and while I wasn't looking, she pulled out her feeding tube and fed the mattress.  *sigh*  I don't miss that!  I cleaned that up and started a new feed.  After letting her air out for awhile, I also put some diaper cream on, some cornstarch (to dry it out) on top and then a fresh diaper.  Within moments, she had diarrhea again.

My first thought was - I can't do this all day.  Then of course I realized that I can.  I can do this if it is what she needs.  It may mean that other things don't get done, but isn't that what happens in life?  We make choices with our time every day.  I've been trying to change my focus and instead of viewing interuptions as messing up my plans, I'm trying to think that this may be what God has planned for me today.  Whether it is an interuption of tending to a sick child or having a discussion that takes time away from something else, helping a friend instead of cleaning or whatever.  God has ordered my days and I need the reminder that my plans aren't the most important thing.  I'm hoping that I won't miss out on what God has planned for me by being so very focused on my own agenda.  This is a hard thing for me as I tend to be list-oriented and driven to accomplish things.  I'm learning - and I'm sure will have to continue to learn - to relax in regards to time, expectations and more.

I'm rambling for a few moments while I can.  LOL  I need to run to the store to try some different creams that have been recommended by friends.  I'm going to go see what I can find that might be a better help.  I appreciate prayers for wisdom in helping Eliana, wisdom in how I spend my time and mostly healing for our little girl.

I'm thankful that I can be home with her.  I'm thankful that she is feeling better.  I'm thankful that nobody else is sick.  I'm thankful for a dear friend that brought us a delicious dinner on Saturday - enough for several meals.  (Thank you Heather!)  I'm thankful that while my little girl isn't feeling well, that she is well enough for me to care for her at home and doesn't need a trip to the hospital. 

With a grateful heart,

Leslie

Saturday update

Thank you all so much for your prayers! I appreciate them all - those who have posted and those that are reading and praying without posting.

We met Eliana's ped this morning. I apologized for calling her and she was so kind about saying that it was no problem. I had told her last night that I'd never had a sick infant before and didn't really know what to do. She was amazed that with my "herd" (her word, not mine ) that I hadn't had to deal with this before.

Eliana was still running a fever - about 102. Still having diarrhea and a very sore bottom. Her bottom started to bleed while we were there. She did more blood tests (took the nurses 3 pokes to get it) and found that her numbers showed she is getting better. Dr L said it would still take time for it to get completely out of her system. I'm to try to manage her pain and just wait it out. She also told me to call if her fever spiked again or something else was wrong. I am so very thankful for her!

We would love continued prayers for

• Eliana's health - that she would recover soon and feel better.


• That her sore bottom would heal


• Continued health for the rest of the family


• Wisdom in caring for her - and patience in trying to juggle other demands

Overall, she does seem better. While she has a fever, it is nothing like the scary temps last night. She still is not smiling though which tells me that she still feels badly. Her eyes are red-rimmed and her little face is so pitiful. She is still having diarrhea often which means that her bottom hurts a LOT! She cries and cries with each diaper change. I've been using diaper creams and also tried washing in the sink on the last change (water instead of wipes) and she was much more comfortable with that! Thank you to a FIAR mom for suggesting it!

I'm amazed and thankful that this has not spread through our family. I'm not even sure where she could have been exposed and not the rest of us. It's going to make me feel a little more paranoid or vigilant about keeping her hands clean and away from things. This is the one thing I dislike about winter.

I'm very tired and looking forward to some sleep! Thank you dear sisters for your prayers.

With love,

Leslie

Fri night 11pm

Well, I had thought earlier that this was going to be a quick passing of whatever germ she has - but unfortuntately its going to last a little longer.  I've spent most of the day holding a precious baby that just feels pitiful. 

She is still feverish - had a temp of over 105 at 8pm.  She has diarrhea (sp - I should look that up!) which is making her bottom very sore!  (Yes, I'm putting cream on it though wish I'd thought to do it before it became raw.)  She is able to eat some, but has just been miserable for hours now.  When she isn't sleeping (usually on me)  she is often crying.  She just feels terrible - I'm not sure she has really even smiled today.

I did finally call our ped tonight when her fever was so high.  I gave her tylenol and it brought it down to about 103.  She advised me alternating with motrin.  She also thinks that she is probably just fighting a yucky virus since all of her bloodwork came back clear yesterday.  She is on call tomorow and wants me to bring her in early in the morning.  I hope she doesn't mind my calls.  I really do hate to bother her.  Why do I doubt myself sometimes?  I know I'll get more comfortable as time goes on - I can see it in other areas.  This is all uncharted for me though.  I'm thankful to have friends helping me on this path.  I'm so very thankful for the prayers and encouragment I've received.  God is good.

I was pacing with her earlier and pondering on how thankful I am that we live when we do.  For now, Eliana's health issues are treatable.  Even though serious and scary at times, her surgeries and medical procedures have all gone well.  In a different era, she wouldn't have made it, but now she has so many opportunities ahead of her.  I've been reading a couple of blogs of other children that are struggling with so much more.  It breaks my heart - and urges me to pray.  It reminds me anew that I  have so much to be thankful for!

I appreciate your prayers for Eliana and our family.  (So far, there are no signs that anyone else has any of this crud.)  I am thankful for much tonight.  It's been 3 hours since her last dose of tylenol and her fever is back to 104.  Time for the alternating meds.

Hug your children, tell your spouse that you love them, say a prayer for those God lays on your heart.  Give thanks.   God is good all the time.

Blessings,
Leslie

PS  Will update more tomorrow.

Fri about 12:30pm update

Hi Friends,

Thank you for your prayers and encouragment!  Eliana is doing better - though still not well.  I am encouraged and still hoping/praying that it will end soon and not pass around the family.

I stayed up with Eliana until after 3am.  She took a couple of small doses of pedialyte orally at midnight and 2am.  She also rec'd tylenol at 2am.  She did not throw up again and I didn't give any more formula.

She awoke about 7:45 and was fussy ,feverish and still having diarrhea.  I didn't take her temp, but just gave her tylenol.  I took her temp about 1.5 hours later and it had gone down to a little over 100.  I gave her pedialyte orally and she took 4 ounces.  She was hungry I think, but not sure about the temp (cold).  She normally takes her formula warm.  It's also thicker and I wondered if she would be bothere by the thinner consistancy of the water, but it didn't seem to matter to her.  That's good news!

Her ped called to see how she was doing.  She had also talked with the dr on call last night to fill him in on Eliana in case we had needed help.  Have I mentioned today that she is wonderful?!  She recommended that I try giving her a small amount of formula at her next feed to see how she would tolerate it.  She doesn't want her to lose too much caloric content since she has done so well to put on weight.

I fed Eliana again about 11am and she took 100cc of formula.  (A little over 3 ounces)  She typically takes 140cc.  So far, she is doing well with it.  She is currently napping on me.  My other sweet daughter just came in and suggested that I should take a nap while Eliana is sleeping.  Have I mentioned what a blessing she is to me?!  I need to go tell her that.

In terms of symptoms, it seems to be all G/I and not respiratory at all.  (Thankful to have skipped that part!)  It's just a waiting game now for her symptoms to go away.  She seems to 'feel" better at times and then gets fussy again.  We are just going to relax today and take it easy.  Dr L recommended that our week-end plans be cancelled - and then I shared what they were.  After hearing that we were planning a tea party, she wanted to find a way for Rebecca to be able to do that - wondering if I could pass on my responsibilities.  Those of you that know me, know that is hard.  I don't want to dump my work on someone else.  I'll do it though if it is what works best for everyone.  I have learned a lot about letting go of things this past year.

Will update more as I can.  Thank you for your prayers for our precious little girl.

With love,

Leslie

9pm update ...

Eliana just woke up from a long nap.  I thought it best to let her sleep.  She is burning up.  Temp over 104 again..  I fixed her a bottle - which she wanted.  She drank a small amount - less than an ounce - and then threw up.  :-(  My poor sweet baby.  I hate that she feels so badly. 

Please pray for her health and for wisdom as we treat her.  Pray that this would pass quickly from her - and not  pass to the rest of the family!

On a personal note, I've committed to do some things the next couple of days and I'd love wisdom on how to either do them, ask others to do them or just let them go.  I know my friends will understand.

Off to be with my baby,

Leslie

Update at 7pm on Eliana

When we arrived at the ped, Eliana's temp was at 104.3.  :(  Guess I do need to add a degree to my thermometer.  They did a variety of tests on her to try to determine the cause of the infection.   (She wasn't thrilled with any of them either.  Her ped commented that this was only the second time she had seen her cry and the first was after her open-heart surgery.)

*Urine - (put a bag on her) - all looked and tested fine.

*CBC - (blood) - All blood counts are within normal ranges.  No  numbers alarming in any way.

*O2 Sat - (oxygen) - Her numbers were at 97 which is good.

*Ears - no sign of infection

*Heart/Lungs - All looks good there too.

*G-tube site - looks good, no signs of infection

At this point, there is nothing "blatant" that lets us know what is causing the infection.  She thinks it is probably a virus that will just need to run its course.  She didn't want to prescrive antibiotics (which I'm in agreement with) unless they were needed.  If this does go to her ears, we want to be able to treat that, but not give her meds unnecessarily.

She said it could be respiratory which would turn into a cold type of sickness.  She thought it more likely that it is a gastrointestinal (due to the loose stools) which could mean she ends up dealing with more diarrhea or worse, vomiting.

She is able to eat some, but I'll use the tube if needed to keep her hydrated and as healthy as possible.  This is just exactly what Dr. L is afraid would happen in the winter and why she wants to keep her tube in place.  I'm going to offer foods orally and let her take what she will. 

She is still soooo very hot - even with the tylenol.  She is uncomfortable when awake and is currently sleeping on my lap.

We talked about what we'd done this week.  Most of our outings have been doing things outdoors - the Buddy Walk, picking up things at the State Fair & Farmers Market, going to a corn maze - and one indoor activity was Kindermusik.  The music class was 2 days ago so it fits.  None of the rest of us are sick.  I'm so sad that it has hit my sweet baby girl.

Please continue to pray for her healing.  Please pray that she does not throw up!  The thought of her having to deal with that makes me sad.   The good news is that she looks good overall and the ped said she is in a better place health wise to deal with this than she was a couple of months ago.

Please pray that the rest of us would stay healthy and that I would find balance in the things I need to do.  I know that this is part of God's plan for us and I'm trying to relax in it as best I can.  I know that the prayers of many are aiding in that so much!

My boys are cooking dinner tonight to go along with their FIAR book.  It smells good (and I really hope nobody gets sick after eating). 

With love,
Leslie

PS  Forgot to mention that our sweet ped is  going to call me tomorrow (she isn't in the office to check on Eliana).  She is also on call over the week-end in case we need her.  She is just the best!

Prayer Request for Eliana

She is just not feeling well today.   She woke up in the night - fussy.  Really not like her.  When I picked her up she seemed warm but I wasnt sure if it was from the blankets or a temp.  She also seemed to be a little runny-nosed. 

Well, I just took her temp - at least 101 under the arm.  I finally stopped as it was taking sooooo long.  I'm not sure if this is one of the thermometers that adjusts for under the arm or not which is why I said it was at least 101. 

She is also loose (for her) and just miserable.  She wasn't able to take a fully bottle this morning and just sobbed until she fell asleep in my arms. 

I have a call in to her ped.  I'm just not sure if she needs to be seen or not.  With my others I would give tylenol and wait.  I'm fine doing this with Eliana too - but I'm unsure.  It makes me feel like a new parent again.  SHe just has other issues to consider - heart, feeding/tube and Down syndrome.  I don't want to be negligent because I'm not doing the right things, KWIM?

For now, I'm holding my sleeping baby and praying for her health.  I'm trying to remember that God had this as part of my plans for the day.  While my plans included planning for a class I'm teaching on Sat for our Keepers Group and the following tea party as well as planning for our hs groups family event next week - well, they may have to wait.  Oh, and I was hoping on our first day home this week just to relax - just not in this way.  This isn't an interuption, it is what I'm intended to do.  (Talking to myself here.)

I'm so very thankful that she has not been sick until now.  Considering all the times we have been in and out of doctor's offices and the hospital - that is a praise!  Like most parents, I just kept hoping that she would never get sick.  Now, just praying that it passes quickly.

Need to run - chaos in reigning in the rest of the house.

Blessings,

Leslie

 ETA:  Took her temp at 1:30 and it was up to 103.  This was after being asleep on me for a good long while. 

We are going to see our ped at 5pm.  Any of my other children and I wouldn't be going in.  They even said the same thing - if it were another child she probably wouldn't need to be seen.  With all that she has had though, they want to be careful and I do appreciate that!  This is Eliana's first time being sick.  I knew it would come, but am so sorry it's here.  She is being a little angel about it though.  I've held her most of the day and that has kept her happy.

They had no appointments for today - just after hours with a doctor I don't know or going to the other office where we also don't know anyone (which I told her would be fine).  She had me hold for a moment and then came back and said our ped would meet us at 5pm.  :hcry:  She is so very wonderful to us.  This isn't the first time she has met us after her work hours have ended.  Thank you God for placing this woman in the hospital when Eliana was born. 

The tylenol has helped with her fever (down from 103 to about 100.5).  They want to make sure there is no infection at her tube site - and just generally check her out.  She does seem to be feeling better since the meds - though still has a fever.

Thanks for your prayers.  Will update more when I can. 

Love,

Leslie

The Buddy Walk

I think the thing that surprised me most was not the large crowd or the variety of activities or the beautiful children - instead it was the number of times I felt my eyes filling with tears.  I had not anticipated that.  I guess in some ways there will always be tender spots in my heart that just weren't there before.  Spots that are touched in ways I don't expect but will probably grow a little more accustomed to.  I'm not even sure why the tears were so close to the surface.  I wasn't saddened by being there at all - in fact just the opposite.  It was a wonderful day for our whole family!  I remember the first thing to bring tears were the numbers of people as we were driving in.  It can seem a solitary life at times - and we've been so isolated this past year.  Seeing lots of cars and lots of people just seemed like a statement that we weren't in this alone.  It was so encouraging to see lots of people there in support of those with Down syndrome.

We decided at the last minute to join in on the Buddy Walk.  I didn't really know what to expect, but since we were free we thought it might be fun to check it out.  I am so very glad that I did!  What an amazing job this group of volunteers did in putting together this event.  I have had only a little contact with members of this group via email and one mom's meeting - and I knew there to be a lot of generous and warm-hearted people involved.  This event far surpassed any expectations I might have had.  In addition, it was a gorgeous day!

We arrived around 12:45 and parked in the specified lot. There was a trolley to take us to the park (not a long walk, but it was a fun ride).

When we arrived we checked in and received t-shirts and goodie bags. We walked into the event and saw so many things including mounted police, chalk, bubbles, lollipops ... and a pirate! I was thrilled just knowing our pirate-loving son would love this! He hid behind the stroller!  We tried to get our outgoing, never-meets-a-stranger son to talk with the pirate and pet the parrot - but nothing doing! His brother tried on the pirate hat and wore the parrot on his shoulder.

There were lots of games and activities from balloon making to face-painting and moon bounces. There were celebrity figures like the local sports mascots and a tv reporter. We debated on what to do first, but the children were hungry so we ate. Hotdogs, fried chicken and lots more to choose from. We definitely had our fill. The children were very excited about the sno cone machine too!

There was a silent auction. We understood this a little better and made a number of bids. Rebecca helped to keep an eye on some of our bids as it got close to closing time. We won three auctions! I think I have a couple of Christmas gifts in hand now. When I told Roger about the auction and suggested he might be interested in checking it out. He asked what I bid on. He wasn't surprised that the first item was ... books. LOL

We went on a short walk - maybe 1/2 mile. We started a little late as Eliana was eating. There was no room for Christopher to race ahead ... so he walked with us ... most of the way. It was a leisurely stroll made all the more enjoyable by many signs along the way with photos of children in the group with various sentiments on them. I found the tears again - some of the only sad ones - when I saw a few signs that were "in memory".

After the walk we went back to hear Chris Burke (actor who played "Corky" on the tv series "Life Goes On") and two brothers in concert. They sang lots of fun songs and Chris talked about the importance of focusing on "ability" and not the disability. He was funny, entertaining and encouraging. Rebecca loved his music and bought 4 of his tapes. We also had some photos taken with him.

I saw some gals that I'd met at the Mom's meeting. It was so nice to see a familiar face! I also met a gal I'd talked with on the phone. She sees the same ped who had connected us. I recognized her from a photo in a booklet put out by the local DS group. Her oldest daughter also spent time talking with Rebecca and answering her questions about what it was like to have a sibling with DS. They are lovely and it was nice to finally meet them. I also ran into a gal I'd met at the homeschooling conference and was able to spend some time with her as well.

One of the things that I enjoyed about the day was seeing the children. So many beautiful faces - enjoying life and the gorgeous day. It was nice to have soooo many people comment on Eliana - how cute or beautiful she is. Nobody looked away and many just had to come up and talk. It was sweet.

When the event drew to an end, we visited the playground for a while and unfortunately missed the last trolley. It wasn't a bad walk and was a nice way to end a delightful day.

I'm thankful we had the opportunity to go and I look forward to going again in the future. If any of you reading are local and would like to go with us, we'd love to have you join us.

There are so many things to be thankful for - and I'm very glad that God has placed us right here! 

With love,

Leslie

PS  As I look at our photos, I realize that  Roger was behind the camera most of the day and thus I don't have many photos of him.  Christopher didn't want to be in any of the photos - though I did get a few.  I have a lot more but some weren't the best/most flattering so they will stay in our family albums.

Short PRAISE!

What a full and fun day! I want to post all of the details and share some fun pictures with all of you.

I hope you’ll forgive me for not doing it tonight. Eliana finished all of her feeds by 11pm today!!! That is a first!!! She has NEVER before finished before midnight! I’m going to take advantage and go to sleep a little earlier than I typically do.

I will say that the Buddy Walk was awesome! It was soooo much bigger than I had anticipated. There were hundreds of people there. So many things to do – and it was just great. I ran into a few gals that I had met before which was neat. All of us enjoyed our day and look forward to doing this again next year!

I’ll try tomorrow to post more details and photos too!  Here's one though that captured all of our feelings.

Blessings,

Leslie

Delight!

Delight yourself in the Lord, and He will give you the desires of your heart - Psalm 37:4

I used to think that if I were obedient - good - doing the right things, that I would be blessed.  I would get the things that I wanted.  My prayers would be answered the way that I wanted them to.  It seemed like a good and fair trade.  It made sense to me (and often still does!)!  Even though my Daddy often told me growing up that "life isn't fair", I still wanted it to be so.

I'm thankful though that God is more than fair - He is a giver of grace.  I am learning more about delight.  It isn't so much about me - and what I want.  It's about Him.  It's about my heart being in the right place.  When I'm able to find delight in God - not in my circumstances or blessings - then I will find that my heart is filled and that my desires are being met.  

It's easy to find comfort in this when things are going well.  It has been a huge struggle for a lot of the last year.  It is so hard to understand sometimes.  Even last night my 8yo asked me "why is life so hard?".  I'm not sure if I answered him fully.  He often surprises me with his insight on things beyond his years.

I think life is hard for a number of reasons.  An obvious one is due to sin.  Though I also think that difficulties help to keep us on our knees seeking answers from God.  Trials keep us focused on the One who can help and heal.  Pain causes us to long for life with Him - for His peace that passes understanding.

I am trying to keep my focus where it should be (though that isn't always easy).  Finding my delight in God.  Being content in what He has given me.  Finding peace in my circumstances - even when they aren't what I want.  I have so much to learn.  Thank you for being so patient with me Lord.   

Speaking of delight - Eliana is doing so well!  She is such a delight to me.  A good gift from God.  When she was born, I had a lot of questions, doubts and fears.  I'm sure I will continue to wonder about many things.  I do know that Eliana is a precious, incredible gift!  I can't help from smiling and hugging on her.  Her smile just lights up the room!  Almost every time she is alone and someone walks in to her, she responds with happiness and a huge grin.  How can you not smile back?  She gives love so freely - what a blessing!

Eliana has not needed to be pumped since Monday!  Yippee!!!  I sometimes wonder if I'm being hard-headed about not using the pump, but I really want her off of it!  I obviously wouldn't hold out if she were struggled or just needed it.  (Like on Monday.) 

We visited her ped yesterday (Fri) and I told her that I had decided not to tube her once she had her first day of complete oral feeds.  I felt she was doing well and that if we were a little short that it would be alright.  I confided that I had decided that "I'm the mama and I can make decisions for my baby."  (Not leaving out Roger in this decision process as he too wants to see her off the tube.)  It was more that I felt we didn't need to wait for a "professional" to tell us what to do each step of the way.  Her comment was that I had always had strong opinions on how she was fed.  (A reference to my stubborness about breastfeeding Eliana - said with kindness.) 

After checking her out, the ped agreed that she was doing GREAT!  She measured her height and weight (and head circumference) on 2 different charts.  One for typically developing (I like this so much more than "normal") children and one for children with Down syndrome.  On the first chart she measures at the 25%.  Not bad given all that she has been through!  On the second chart, she is at the 75%!  Way to go!  She hasn't gained much weight in the last month and I was wondering if she would have dropped, but she is maintaining a pretty consistant curve. 

Here are some of her numbers from the visit:

Height 27.5"

Weight:  17pounds 14 ounces

O2 Sats:  100!!!  I had tears forming in my eyes as I watched the numbers climb until they reached this.  This measures how well the oxygen is getting to her heart.  This is a struggle for most heart babies and was for Eliana before her heart was repaired.  It's sweet to see that high number which indicates all is working as it should.  Thank you God for my baby's healed heart!

I asked the ped about getting her off the tube.  As I anticipated, she wants to wait until spring to have it removed.  I understand as a sickness in which she can't eat would land her in the hospital instead of just needing to be tubed.  She recommended that I call the surgical nurse and ask her about it.  I had told that I thought there was a window in which if she got rid of the tube that she wouldn't need surgical repair to the site.  Her opinion was that given the amount of granulation tissue that there is around the site that she will need some repair to make it "look pretty" again.  I'll hopefully be able to talk with the nurse next week and have a little more info on this.  Her site is getting worse in terms of the granulation.  Think of a red swollen growth around the button.  It doesn't seem to bother her a lot in her day to day routine, though she doesn't really like to be touched there directly.

Eliana had a visit with her PT (physical therapist) on Wed and did well.  She seemed to cry less than last week.  We didn't have her feeding therapy in the morning and I wondered if a slower day at home helped any with that?  She is working on learning to crawl.  Right now she tends to scoot backwards - which is frustrating when you want something in front of you.  She hasn't figured out how to move her legs forward so we are trying to move her legs and then waiting for her to move her hands. 

She is also learning to bear weight on her legs.  She is doing better with this.  For awhile she would just crumble when we would try to have her "stand".  These are the next two developmental milestones for Eliana to reach.

Her therapist commented on how fortunate Eliana is to be in a home with lots of attention.  She even gave the boys things that they could do with Eliana to help her.  Eliana has a team of therapists-in-training right in her own family.  *grin*  I love watching her siblings with her.  ALL of them love to be with her.  They are drawn to her and want to hold her and love on her.

Christopher has always loved scooping her up from her crib or chair or wherever she may be (even from my arms) to play with her.  Rebecca loves to mother Eliana and fix her hair.  I think that the little boys have watched their older siblings and learned a lot on how to love on and care for their little sister.  They all love to hold her, sit with her, talk to her and play with her.  I find such delight in watching them with her.  I'm thankful that they are home and able to provide so much love, encouragment and fun to her throughout her days.

Tomorrow we are planning a fun park outing.  We are attending a local Buddy Walk.  It's sponsored by a local Down syndrome group.  There will be a walk (fundraiser for the group), food, activities, a raffle and a band.  Chris Burke in one of the members of the band.  He is the man who played "Corky" on the tv series "Life Goes On".  I'm excited and a little nervous.  I'm excited about meeting some of the moms that have been so very kind to me via email.  I'm excited about seeing some families and in particular other children with Down syndrome.  I'm nervous about going to an outing where I don't really know anyone - though I'm sure we'll be fine. 

As always there is more that I want to write - but will have to wait until later.  I would love to share some of what we've been doing in school - our art and field trips (horseback riding) .  Roger and the boys have started on the long-anticipated tree house in the back yard!  It's looking super and the boys are so excited!  Way to go guys!  It's late though and I'm trying to get to bed at an earlier hour.

Leslie

 

A Belated Happy Birthday to my sweet Isaiah!!!

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

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

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

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

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

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

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

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

Me:  Is that right?  Tell me more.

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

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

Isaiah:  That would be fine.

Me:  What if she picks a doll? 

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

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

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

The pirate ship in our backyard.

A close-up of the pirates.

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

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

Mommy

 

A Day at the Fair

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

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

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

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

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

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

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

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

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

 

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

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

Boys picking fruits and veggies for their baskets. 

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

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

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

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

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

He clearly loved the rides!

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

 

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

Blessings,

Leslie

Fair Entries

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

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

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

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

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

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

Here are some photos of the things we entered.

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

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

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

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

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

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

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

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

That's all for now.

Blessings,

Leslie

 

Eliana updates ...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thanks for your prayers, encouragment and love dear friends. 

Leslie 

 

What was I Thinking?

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

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

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

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

 

Our Night at the Gala and Auction

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

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

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

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

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

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

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

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

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

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

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

With love,

Leslie

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

 

 

 

Tears of Rejoicing!

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

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

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

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

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

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

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

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

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

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

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

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

With a heart filled with praise,

Leslie