Hi All,
We've had a busy and fun week. I'll write more later as I'm able to. I didn't want to post that we were gone - while we were gone. So here's a hint as to why there hasn't been much happening on my blog - or in response to much else from me.
Here's a photo of our family - the only one of the week. It's not the best, but it's what we've got. :-)
Love,
Leslie
Hi Friends,
I wanted to update you on our day yesterday. Sorry I wasn't able to write earlier - the last 24-48 hours have been very full!!!
Here's a little bit about our afternoon. We drove over to Duke in plenty of time for the event. We were met there by Roger and some of our friends too. As we waited for people to arrive, the children watched the fish in a large tank, played with some of the toys and enjoyed the kid-friendly environment. Shortly after we got there, the gals from the Development office arrived. They had brought the large check and refreshments. We made introductions and spent some time talking while waiting for the doctors.
Dr Carboni, Eliana's cardiologist, was there to receive the check along with the Head of Cardiology Dr. Rhodes. Everyone was so nice and interested in talking with Rebecca about what she had done. It was a little hard for Rebecca, but thankfully the whole affair was very low-key and comfortable. She also warmed up as time went on and was even jokiheng with our cardiologist towards the end.
Here's a picture of Rebecca presenting the check to Dr Carboni and Dr Rhodes. I'm in with Eliana (who they wanted in the photo).
She did not make any formal speech - just answered questions and talked in small groups. She was also able to set up some of her bracelets for sale on a table. Several of the people there bought some. One sweet moment was when a little girl came over to buy a bracelet. She was there being treated for cancer. Please take a moment to say a prayer for Megan - for God's healing touch to be on her body. What an ordeal to have to go through this with a child! I can only imagine the difficulty.
We had some refreshments afterwards - a hit with my younger boys. LOL We talked and laughed and just had a nice time. I know that Rebecca enjoyed herself. The large check is going to be displayed at Duke for awhile and then we will be given the check to keep.
Here's a photo of our entire family on this big day!
Thank you for your prayers and good wishes. Oh, there was no tv camera there. Not sure what happened, but perhaps it was for the best so that Rebecca didn't feel so uncomfortable. All in all, I'm proud of my little girl. She was given a dream and then she followed through - something we can all learn from.
Speaking of dreams, this song was one that I heard just a day before Rebecca made her donation. I thought the message was a good one - and one that I need to remember for all of my children!
Mark Harris - Find Your Wings
It's only for a moment
You are mine to hold The plans that heavens has for you
Will all too soon unfold
So many different prayers I'll pray
For all that you might do
But most of all I want to know
You're walking in the truth
And if I never told you
I want you to know
That as I watch you grow
I pray that God would fill your heart with dreams
And that faith gives you the courage
To dare to do great things
I'm here for you whatever this life brings
So let my love give you roots
And help you find your wings
May passion be the wind
That leads you through your days
And may conviction keep your strong
Guide you on your way
May there be many moments
That make your life so sweet
Oh but more than memories
I pray that God would fill your heart with dreams
And that faith gives you the courage
To dare to do great things
I'm here for you whatever this life brings
So let my love give you roots
And help you find your wings
It's not living
If you don't reach for the sky
I'll have tears as you take off
But I'll cheer as you fly
I pray that God would fill your heart with dreams
And that faith gives you the courage
To dare to do great things
I'm here for you whatever this life brings
So let my love give you roots
And help you find your wings
Blessings,
Leslie
Hi All,
We are preparing for an exciting afternoon! Rebecca will be presenting a check to Duke Children's Hospital today at 2pm. We just found out this morning that a local news camera will be there!
If you are local, you will hopefully be able to see something tonight on the Durham channel (WTVD). If I know more details about the time, I'll post it.
Please continue to pray for Rebecca. She is excited and very nervous. Please pray that the Lord would give her words to speak when she is too nervous to know what to say. Pray that He would be glorified in all of this!
Thank you,
Leslie
Hi Friends,
Our first field trip was today - and it was a big success! Thank you for those that were praying for us. It was just nice to be out! It was fun to see friends again and to feel like I have back a part of my life that I've missed. I appreciate these times even more now that I've been without them for awhile.
I made a list last night of things to do this morning - from packing a picnic and things to take (lots of it for Eliana!). This morning I tore this list in half and gave the lunch/picnic prep list to my oldest two and they did a fabulous job! They completely took over all breakfast and lunch prep while I fed and got Eliana ready for the trip. (Typically close to an hour to do this.)
We left a little later than I had hoped - but arrived on time at 9:45am. The drive was a little more than 30 minutes and Eliana was a great traveller. She was laughing several times during the trip at something Daniel was doing. He likes being the one to help her and loves playing with her. He often comments "My sister. My sister." when he is playing with her.
Our outing today was to a place called "The Rocks". The children saw a man panning for gold and he told them a little about the history of gold mining. They were also able to "dry pan" a bag of dirt. There were a LOT of stones and gems in the bags. The children were thrilled. Isaiah kept talking about "his treasure". Joshua was so very careful about getting all of the gems - large and small. Daniel liked taking his stones out, lining them up and seeing what he had.
During it all, Eliana was a doll! She rode in the sling and hardly made a peep. When it was time to eat, she did a great job on her bottle. She ate 4 ounces and I decided it wasn't worth hooking up the pump for just 20cc so we didn't. It was nice not to have to do that!
After eating lunch and playing for awhile, we decided to go home. We made a detour by a local dairy farm for some delicious ice cream. I bought a video about the dairy farm. It was fun to watch and learn about the operation. They used to do tours when my oldest children were young, but stopped some years ago when the foot/hoof sickness was going around.
***I have a few photos from our day that I'll try to add in later. ***
There is more to our day, but it's late and I'm heading to bed. We have a big day tomorrow! If you think about it, please pray for Rebecca. She is really nervous about the presentation tomorrow. Several of her closest friends are coming to support her. I want her to be able to enjoy this moment. She has worked very hard for it and I don't want nervousness to overshadow the day.
Thank you dear friends for your encouragment and support.
With love,
Leslie
Hi Friends,
I'm a little behind. I'm finding my days are just busy - as I'm sure are yours - and there aren't enough hours in the day. (Are there ever?!) We are trying to keep up with schooling and it has added a lot to the day. I need to find a balance with housework too. *sigh* That has never been one of those things that I love to do. Not sure I know many people that do though! I probably need an attitude adjustment here - as well as some training time for the children and I. ;-) There just aren't enough hours to get it ALL done. I'm Ok with that - most days.
Monday - We had a fun Labor Day! It was nice to have Roger home from work. We had friends come over for the the afternoon/evening and had a blast together. Roger and the kids went swimming while my sweet friend and I did some scrapbooking. It's been a long time since much of that got done and I thoroughly enjoyed the time!!! I need to find a way to make that a regular part of my week? or maybe month? I do enjoy this creative outlet - plus it's really fun to look back at photos of people and events that you love.
We had ribs for dinner which were a hit. The evening included games, a movie, ice cream and more scrapbooking. Fun for all of us!
Tuesday - Eliana had an appointment with her ped today. It was great to see her. She is just so positive and encouraging! We also saw the ped we had visited on Fri and who had been concerned about Eliana and was hoping that her advice had been good. (It was.) Her burn looks much better and the site isn't bleeding any more. Thank you God!
The area still doesn't look great though and the ped thinks it will just be that way for the duration. She recommended that I not continue with the silver nitrate. Hopefully it won't get any worse. It's hard to look at it as it just looks painful (and truthfully it looks yucky). It doesn't seem to bother Eliana thankfully.
She is still doing well on the height/weight chart. She is high on the "Down syndrome" chart which plots the slower/lower growth patterns. She is at 80-85% there. Don't remember where she is on the other chart. She is still on the curve, though I don't remember where.
BIG PRAISE for today's feeding. She ate almost 17 ounces!!! Yippee!!! This is the most to date since she was in heart failure. Way to go Eliana! She took just 6.5 ounces through the tube. If she could continue like this, we could see an end in site for the tube!
Wed - A day at home! Yippee! I am really appreciating those. We have physical therapy in the afternoon. I'm not sure if I've seen much change in what she is doing. She is trying to crawl though! She moved one hand forward today and kind of scooches her knees forward too. Cute!
Oh, the other thing she is doing more of is clapping. She did this in imitation of my friend Rebecca the other day. It was fun to see her doing that. She did it so much at the ped office today that the ped asked if we did this a lot when Eliana did anything. LOL We don't though I bet we'll do more of it in the future. This is something Eliana just enjoys doing.
Thur - Our first field trip with Eliana and the feeding tube "stuff". We (Eliana and I) have missed almost all of the field trips this year. We went briefly to one that was close by and in between feedings. We also went to one that was next door. We have not ventured away from home as a group at all.
I need to find something to warm a bottle while we are out. No luck yet in finding something that is battery-operated and not something that plugs into a car. I'm hoping that someone makes this and that it isn't just a "good idea" in my mind. LOL
I'm excited and a little nervous about being out and having to manage the pump and take care of Eliana - and the other children. It's with our FIAR homeschool group - a wonderful group of friends - so I know we'll be in good company. I've really missed these outings and being with these friends and I am excited about starting back.
Fri - This is a big day!!! Rebecca will be presenting a check for over $5000 to Duke Children's Hospital. I'm so excited for my girl - and a little nervous for her too. We don't know the details yet of how things will be done. I'm hoping to find out more as I think this will help Rebecca not to be so nervous. She has done a wonderful thing and I'm really proud of her.
We are exploring the possibility of having a local tv station cover this. Pray that if this is God's will that it would work out. I would think a "positive" story would be a nice thing to cover.
Prayer requests:
*Healing around Eliana's button site.
*Continued improvement in Eliana's feeding.
*That our field trip would be fun and educational for all of us!
*A friend's son Tyler is having his heart surgery on Mon Sept 10. Would you join me in praying for a successful surgery? Prayers for his mama and those that love Tyler would be appreciated too.
Will update as I can. I need to post some photos.
Thank you friends for caring for us.
With love,
Leslie
PS I've been asked about how to buy bracelets. If you will just send me an email, we can arrange this for you. :-)
It has taken me awhile to get to this post, but I'm thrilled to make this announcement!
Three cheers for Rebecca - she has reached her goal! Wholehearted sales are currently at
$5083
In just 6 months time, a goal that seemed lofty and unreachable, has been attained. It has taken a lot of work, help from friends and lots and lots of time! We have been encouraged by others as the story of a little girl's vision touched many hearts.
It was something we spent many hours doing together as a family in our bedroom while Eliana was in heart failure. Friends would gather in our home to help out at various times too!
I talked with a gal in the Development office yesterday. The date for presenting the money is set - next Friday September 7th. Rebecca will be presenting a check to Duke Hospital to be used to for heart babies to get the help that they need. At this point she has not specified the use of the money - other than to help heart babies. The cardiologist had suggested that we might want to "earmark" the money for something specific so that she would know where her money went. We just haven't had any ideas what that might be. If any of you have any suggestions for us - please let us know.
For those of you that may have missed this story, go to this entry on my blog to read more about it.
http://www.homeschoolblogger.com/LeslieNelsen/308596/
They are planning to have one of those extra-large, oversized checks made for Rebecca to present. She is excited about that. She is also a little nervous about having to speak. Please pray that she would have a calm spirit and just be able to share her heart. We aren't sure yet exactly what type of comments they might want from her. We are expecting Eliana's cardiologist to be there. He has been wonderful! I'm not sure who else will be in attendance. I do know her whole family will be there - cheering her on!
Thank you to many of you that have encouraged Rebecca (and me) as she has started a non-profit business at the age of 11. It has been quite a learning experience for all of us.
I'm so thankful for her tender heart. It's sweet for me to see her using her gifts and being willing to work hard to help others. I learn a lot from my children. Rebecca has been an incredible example to me of compassion and effort - doing something to make a difference in the lives of others.
If any of you are still interested in bracelets, she isn't planning to stop her business. I'm not sure what her goals/ideas are from this point forward. We'll have to wait and see.
Thank you for sharing in our excitment!
ETA: One small note on Eliana. Her burn seems to be healing well - but she is having bleeding around the site. Please continue to pray for her healing and no infection. It's a little alarming to see the blood. She does not seem to be in any pain thankfully.
With love,
Leslie
Hi Friends,
I have an updated request for Eliana. I called the ped office today about her burn and the nurse didn't want to give any advice without having Eliana seen by a doctor. We scheduled a visit for 5:30 during the after hours clinic. I had tried calling the surgeon's office in the morning - the nurse was gone by mid-day and the surgeon was in surgery. There was no one else there that could help me. The ped office seemed my best bet at this point.
We left home a little after 5 (the office is about 15 min away) and got stuck in traffic. I got off on a back road - and got stuck in more traffic. The time was pleasant though as I was talking with a sweet friend that was full of encouragment.
We arrived at the office close to 6pm - obviously late for our appointment. We had a longer wait before being seen. The doctor was very nice, though seemed a little unsure about how to treat Eliana. She really wanted her to see the surgeon. That doesn't seem possible given that it's a holiday week-end.
She told me that Eliana has 2nd degree burns. :-( This made me feel awful! She could tell that and reassured me that it wasn't my fault, but I still feel badly for my sweet little girl.
I had another friend tell me of this happening to her son, but I thought it was due to a combination of the medication we are using with something else. I really didn't think it would happen to Eliana. The first two treatments went without incident. I guess perhaps I should have used more common sense. I also wish I had been warned by the surgeon or given instructions on how to prevent it from happening. Guess I have more to learn.
For now, we are treating it with burn cream twice per day or as needed. We are also to keep a close eye out for infection. She is to be seen immediately if this occurs.
Please join us in praying for the following:
*No infection at the burn site.
*Healing would be rapid and complete with no complications of any kind.
*Wisdom for us as we care for her and for the doctors that are treating her.
*No pain - for now she doesn't seem to be in pain for which I'm thankful.
*Increased appetite for eating from the bottle. She seems to be stuck at 2.5 ounces per feed for the last 2 days.
Lord, I pray that you would place your healing touch on sweet Eliana. Make her hurt places whole. Bring comfort to her. Please keep infection away from her body and keep everything working properly with no complications. Please give all of us that care for her wisdom in knowing what is best for her. Thank you for holding her and loving her more than I can begin to imagine. Thank you for entrusting us with this precious little girl.
Thank you for your prayers dear friends,
Leslie
Hi Friends,
I've been wanting to write - but just not finding the time. We've started back to school and this week is one in which we have been going full-speed ahead. It's kept my days really busy too! I can tell we are out of all of our routines from schooling to chores and more. We probably need to spend some time in training, but we'll try to do it as we go. I don't want to take a break yet as we'll be going to the beach for a week soon - so we'll work until then.
Our schooling is going well. Daniel has enjoyed having his own time with Before Five in a Row. (Reading picture books and doing activities that tie in with the story.) We are reading Play With Me this week and he has asked to read it over and over again. Today we made pinecone/peanut butter bird feeders which he thought was great (as did two of his older brothers that joined in the fun).
Isaiah and Joshua are doing Five in a Row. Our book this week is Andy and the Lion. Today they worked on two-color pictures - like in the story. Joshua really balked at being limited to 2 colors. I encouraged him to just try it. He finally did and was very pleased with the results. He thought he might even try it again.
Rebecca is studying with Beyond Five in a Row. Today she spent time learning about shelters and built an igloo from sugar cubes. (Lots of my children just wanted to eat them - yuck!) She has also been learning about the "golden spike" and the Transcontinental Railroad to go along with The Boxcar Children.
Christopher is doing a variety of studies from learning about the Romans in history to biology in science and using The Lord of the Rings to study English.
Eliana is busy playing and having fun. I love to see her face break into a smile when she sees someone coming to her to play. She is truly a delight!
She is continuing to eat well - though not that stellar day from a few days ago. Today she ate about 13 ounces which is more than half! Hoping and praying she would continue to improve.
We are still having trouble getting the parts we need for her tube. I talked with them yesterday and was told that the part we needed cost over $800. I assured her that this could not be the case! It's just a tube with a clamp in the middle. She finally found the "correct one" in the warehouse and promised it would be here by today. She was right - it did arrive. It however is not the right part. It is the one that sticks up from the photo I shared last month. *sigh* I've looked up the part on-line and am hoping we can get this figured out tomorrow!
Also please pray for Eliana's healing around her button site. I think some of her skin is burned from the cream to get rid of the "granulation tissue". :-( I didn't realize that it could do this to her skin and will be calling in the morning about this too.
I know that I owe many people an email. I will try to get back to you. Please know that I treasure receiving your words of encouragment!!! My lack of response is not reflective of any lack of appreciation. I'm truly just busy with more on my plate than I can get to on most days. I will do my best, though please forgive me if it isn't all that great or if it doesn't happen.
This is feeling a little factual - but thought it might be nice to have a peek into our lives. I've been learning a lot about how God views me (and you!) and it's just beautiful. Will try to write more soon. Still thankful to be a Child of the King!
With love,
Leslie
PS Still working on sharing Rebecca's news - hopefully tomorrow!
I'm very, very excited about one thing on our schedule this week - we have NO medical appointments outside of the home!!! When was the last time this happened?! I honestly can't remember. I feel like we have a free week to do with what we want. I need to make some plans so that we can make the most of our time!
We have no feeding therapy this week as our therapist is on vacation. Between her vacation and ours we will miss 3 weeks. At this point though, I'm not too worried about it. Can I just brag on my littlest girl? Today (Sunday) she ate 15 ounces!!! Is that amazing?! It is the most she has had in one day since she went into heart failure in January. Oh, happy tears. It has been a long, long time. I'm feeling very encouraged and hopeful at this point that she will be able to eat - and get off of this tube. Please continue to pray for her feeding success.
Tomorrow (Monday) we are planning to visit a pond. My oldest and a friend are collecting various samples from the pond to study as part of their chemistry lab. The rest of the children will be doing some nature studies/pond studies to tie in with their studies. I'm hoping some of them will want to draw in their nature journals. I'm also hoping we'll see some interesting things. In any event, it will be fun to just be out. We're just planning to go to a small pond near our home.
Tuesday - I've made plans to attend a local Mom's Night Out with the local Down syndrome group. I'm a little nervous about going. The meeting is very close to my house though so if I'm going to try it - now seems like a good time. I posted a note to the group and I've received soooo many encouraging notes from other members. It seems like a really neat bunch of people. So, I'm looking forward to it too in spite of being a little nervous.
We have physical therapy on Wednesday. I'm hoping Eliana will be able to do a little more and not have a sore tummy this week. She is loving being up on her hands and knees - rocking and looking like she is ready to take off! Her button site isn't really looking better, though I'm guessing it will just take some time. It doesn't look any worse either.
That's about it for the week. Christopher has science lab later in the week with the pond samples. That's it!
I'll try to write more tomorrow updating on Rebecca's Wholehearted. :-) Stay tuned for the news! *grin*
With love,
Leslie
She is eating!!! I'm just thrilled with what she has done today. Her first feeding was at 8:30am. She was doing great taking most of the bottle. She got stalled a little on the last ounce. We took a short break while I got ready for church and then tried a little more. She ate 128cc - out of the 140 she is supposed to be eating. We skipped the last 12cc as it seemed silly to pump in so little. That's a little over 4 ounces.
She just finished her second feed of the day - and took 110cc which is a little more than 3.5 ounces. she is getting the last ounce via tube as I type.
The surgeon on Friday asked what I thought was making the difference in her ability to eat now. I do think that having the NG gone has made a big difference for Eliana. She seems much more content. While the g-tube is often a pain for me, it really isn't for her. I'm getting used to it too. I know the problems and how to deal with them. for the most part. (At least I'm hoping I've figured out most of the problems. LOL)
I'm so very thrilled with Elaina's eating progress! She has taken a little over 7.5 ounces so far today! She has 3 more feeds to go. If she can keep this up, we'll soon be able to do all of her feeds by mouth. That will be a glorious day!
I was reflecting today on how when Eliana was born I hated giving her a bottle. I wanted to nurse her so badly. She was able to nurse, but not for long enough and when she went into heart failure she was not able to eat much orally at all. Now, the bottle that I so didn't want to be a part of our day - I am welcoming and looking forward to. Isn't a little perspective a wonderful thing? I am thankful that we have this option for our daughter.
Thank you God for this moment of hope. This day has been one already of hope. The message in church was encouraging and it was just sweet to be there with my family. I've missed us being able to be out together. This peace in my heart is helping to feel like I'm finding that "new normal". I so wanted things to be like they were before that I'm sure I was resisting the changes. I'm happy to have back some of the old (like today I'm trying to bake bread by hand for the first time in 8 months), but I'm also happy to find joy in the new too.
Lord - I am thankful for you. I am thankful for the opportunity to praise you. I am thankful for eah blessing - large and small - that you place in my life. Thank you for opening my eyes to see more of the blessings that you provide.
With love,
Leslie
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