More to update today. We had eye appointments this morning for Christopher, Joshua and Eliana. We have been visiting this eye doctor for 10 years. She commented that she thought this was the longest we'd gone without seeing each other - 6 months. We have been there a lot over the last decade!
Christopher got fitted for contacts. He tried them last summer and couldn't get them to work for him. He has done much better with them today. It's amazing to me how different he looks without his glasses. I think he is pretty excited about them. He bought a pair of sunglasses tonight and commented that they were his first pair. I took a photo of him and will try to download it sometime this week-end.
Joshua didn't do so well on his eye exam. He has actually lost some of the vision in one of his eyes. :-( He is nearing the age when corrections won't be possible as the eye stops growing around age 8. We are supposed to do more patching. We haven't been as consistant as we should have been the last 6 months and really need to be diligent about it now!
Eliana had to get drops which she was not happy about. I told the doctor that I wanted to hear that Eliana did not need glasses. She said, "Well I can say that to you". (This was before examining her.) They thought she looked good in terms of being equal in both eyes and tracking. Eliana wasn't the most cooperative by the time it came to be examined. It took me holding her and the doctor prying open her eyes to get a peek at them. Eliana is a little far-sighted, but does not need glasses. I asked if she would definitely need them and the doctor wasn't sure. She said that Eliana might grow out of it. Oh, that is my hope and prayer!
I feel like this is yet one more time that we are going to be in limbo ... waiting. There has been a lot of unknowns ... wait and see ... wait until ... wait. Is this my test? Learning patience while waiting? I think I'm doing better. I've been surprised at times that I was alright with the waiting. In all of this, we have had no control and so in some ways that made it a little easier to just rest in God's perfect timing ... and wait. At other times though it has been hard. Going into the eye appointment I was hoping and even expecting to hear something one way or another about Eliana needing glasses. I wasn't expecting this. It's alright though. I'd rather hear this than to hear right now that she needs glasses.
Physical therapy went well even though Eliana was very tired. She had a hard time napping today. It's fun to watch her learning and doing new things. It's also really fun to see her therapist get excited about the things that she is doing. It gives me a fresh perspective on her skills and accomplishments that I really enjoy! I am thankful for this encouragment - and that too of a dear friend that writes often to cheer me on and to applaud each step of progress that Eliana makes.
I talked with someone at the Duke Development office today. She was very excited about what Rebecca has done and is looking forward to making a "big deal" out of her donation. I'm excited too - and proud of what she has accomplished. We decided to wait until she was a little closer to her goal of $5000 and then we would start setting up a time to formally give the money. Rebecca has been working diligently this week to build up her inventory again. Additionally, several friends have written today about Rebecca's bracelets offering help or wanting to buy a bracelet. I continue to be thankful for the response to her efforts.
Tonight Roger's sister and family have arrived. We were very excited to see them and the children stayed up late to welcome them here! It has been a long time and we are looking forward to getting to know each other again and having fun too!
Tomorrow we will be meeting with the surgeon to find out more information about the G-tube. I appreciate your prayers for wisdom in knowing questions to ask and for any decisions that must be made. I will update as I am able.
With love,
Leslie
Thursday, June 28, 2007
Wednesday, June 27, 2007
Wholehearted Update
Hi Friends,
I wanted to update on a couple of things and then hopefully share some pictures.
FEEDING - Today went well. Eliana had a feeding therapy appointment this morning. She ate some solid foods - and actually swallowed it. She tried bananas and seemed to like them. She also ate some rice cereal. She wouldn't take anything from the bottle however. The therapist used a syringe to put some in her mouth so that she would have to swallow. She noticed that she was having a hard time swallowing and thought it might be worthwhile for Eliana to have a swallow study done. She is planning to talk with someone about this for us.
Later today she actually had two feeding that were much better then the last several days. She has been eating 5-10cc (1/3 of an ounce) on average. Today she had two feeds where she ate 40cc. That is close to 1.5 ounces. Still far from where she should be - but at least she is improving. For several days she has taken close to nothing. I'm hoping and praying she will continue to improve. I'm not sure it will change anything with the G-tube, but it would still be nice.
WHOLEHEARTED - Rebecca took off about a month and a half from making bracelets. We had an incredibly busy time prior to May and she needed a break to finish up some other projects. She has been working hard this week making bracelets (a lot of red, white and blue patriotic ones) and even some earrings and necklaces too. She is working on building up her inventory so that she can try to reach her newest goal. Remember the wild, dreaming, out of reach goal that she set initially - well, she is getting close! Her goal is $5000. She is currently at $4078!
I'm not sure if I mentioned this in a previous entry and thought I'd add it here. Rebecca has had so many people respond to her story in many different ways. It has been a blessing to our family to see how others are touched and want to join in. We have had people make donations of money, beads and gift certificates to buy more craft supplies. We have had friends donate time in helping to make bracelets. We also had one sweet little 7yo girl decide to make and sell bracelets on her own to help Rebecca. She heard the story and her heart was touched and she even donated some of her own money to the cause in addition to the $55 she raised selling bracelets. We have had others volunteer to help sell bracelets, but thus far haven't been able to take them up on their offer as we haven't been able to keep up with demand here. That is a good problem to have. One other person's response that touched my heart was my 7yo son donating $10 of his own money to help his sister's cause. All of this is one more example to me of the body of Christ - working together to bless other families that are facing a medical crisis like the one we have faced. We are so thankful that our daughter has a whole heart! I am even more thankful for the healing God brings to all of our hearts.
I called today and spoke with someone at the Duke Development office. (The same gal I spoke with in March.) She was surprised and excited to hear about Rebecca's sales. The last we had talked she had wanted to reach $1000 before donating the money. She wanted to have me talk with someone there about the publicity and how the donation would be handled. (I'm expecting a phone call tomorrow.) I am excited that they are wanting to make a big deal out of it! It will be a challenge for Rebecca to be the center of attention as she is quiet and a little shy. I think it will be good for her though and know that she will rise to the occassion.
I know that I've promised pictures of her bracelets and have some to share. I'm not sure that the pictures really do them justice. She does beautiful work. Most of the bracelets she makes are out of memory wire with 2-3 coils. These are sold for $10. Many (but not all) of them have metal hearts on them. Here are a few that she has made in a variety of colors.
(She probably wouldn't want me to show these earrings as she can't duplicate those right now. I just liked the picture of the bracelet.)
Tomorrow (Thursday) is a big day! We have eye appointments in the morning. I've been praying that Eliana's eyes are fine. Part of me feels silly as they are what they are - and yet, I'm hoping that they will be fine. That I will hear that she does not need glasses. It is a hard thing to hear that your baby can't see. And a very hard thing to teach a baby to wear glasses. We've done it before - and I'm just hoping not to do it again.
In the afternoon, Eliana has a physical therapy appointment. These are usually fun. The therapist comes to our house which is really nice! Eliana likes to move and it helps to have exercises and games to do with her to help her muscle development.
In the evening we will be welcoming our cousins/aunt/uncle! We are all very excited about seeing them and spending time together. It's been a long time since we have been together.
In closing, I've been reminded again today of how much God loves me. He shows me over and over again. He has used many people to love and encourage me. He has carried me when I was too weak to walk. He has shown me that He is faithful and that He is always with me. He loves you too! You are so precious and beloved to Him!
With love,
Leslie
I wanted to update on a couple of things and then hopefully share some pictures.
FEEDING - Today went well. Eliana had a feeding therapy appointment this morning. She ate some solid foods - and actually swallowed it. She tried bananas and seemed to like them. She also ate some rice cereal. She wouldn't take anything from the bottle however. The therapist used a syringe to put some in her mouth so that she would have to swallow. She noticed that she was having a hard time swallowing and thought it might be worthwhile for Eliana to have a swallow study done. She is planning to talk with someone about this for us.
Later today she actually had two feeding that were much better then the last several days. She has been eating 5-10cc (1/3 of an ounce) on average. Today she had two feeds where she ate 40cc. That is close to 1.5 ounces. Still far from where she should be - but at least she is improving. For several days she has taken close to nothing. I'm hoping and praying she will continue to improve. I'm not sure it will change anything with the G-tube, but it would still be nice.
WHOLEHEARTED - Rebecca took off about a month and a half from making bracelets. We had an incredibly busy time prior to May and she needed a break to finish up some other projects. She has been working hard this week making bracelets (a lot of red, white and blue patriotic ones) and even some earrings and necklaces too. She is working on building up her inventory so that she can try to reach her newest goal. Remember the wild, dreaming, out of reach goal that she set initially - well, she is getting close! Her goal is $5000. She is currently at $4078!
I'm not sure if I mentioned this in a previous entry and thought I'd add it here. Rebecca has had so many people respond to her story in many different ways. It has been a blessing to our family to see how others are touched and want to join in. We have had people make donations of money, beads and gift certificates to buy more craft supplies. We have had friends donate time in helping to make bracelets. We also had one sweet little 7yo girl decide to make and sell bracelets on her own to help Rebecca. She heard the story and her heart was touched and she even donated some of her own money to the cause in addition to the $55 she raised selling bracelets. We have had others volunteer to help sell bracelets, but thus far haven't been able to take them up on their offer as we haven't been able to keep up with demand here. That is a good problem to have. One other person's response that touched my heart was my 7yo son donating $10 of his own money to help his sister's cause. All of this is one more example to me of the body of Christ - working together to bless other families that are facing a medical crisis like the one we have faced. We are so thankful that our daughter has a whole heart! I am even more thankful for the healing God brings to all of our hearts.
I called today and spoke with someone at the Duke Development office. (The same gal I spoke with in March.) She was surprised and excited to hear about Rebecca's sales. The last we had talked she had wanted to reach $1000 before donating the money. She wanted to have me talk with someone there about the publicity and how the donation would be handled. (I'm expecting a phone call tomorrow.) I am excited that they are wanting to make a big deal out of it! It will be a challenge for Rebecca to be the center of attention as she is quiet and a little shy. I think it will be good for her though and know that she will rise to the occassion.
I know that I've promised pictures of her bracelets and have some to share. I'm not sure that the pictures really do them justice. She does beautiful work. Most of the bracelets she makes are out of memory wire with 2-3 coils. These are sold for $10. Many (but not all) of them have metal hearts on them. Here are a few that she has made in a variety of colors.
(She probably wouldn't want me to show these earrings as she can't duplicate those right now. I just liked the picture of the bracelet.)
Tomorrow (Thursday) is a big day! We have eye appointments in the morning. I've been praying that Eliana's eyes are fine. Part of me feels silly as they are what they are - and yet, I'm hoping that they will be fine. That I will hear that she does not need glasses. It is a hard thing to hear that your baby can't see. And a very hard thing to teach a baby to wear glasses. We've done it before - and I'm just hoping not to do it again.
In the afternoon, Eliana has a physical therapy appointment. These are usually fun. The therapist comes to our house which is really nice! Eliana likes to move and it helps to have exercises and games to do with her to help her muscle development.
In the evening we will be welcoming our cousins/aunt/uncle! We are all very excited about seeing them and spending time together. It's been a long time since we have been together.
In closing, I've been reminded again today of how much God loves me. He shows me over and over again. He has used many people to love and encourage me. He has carried me when I was too weak to walk. He has shown me that He is faithful and that He is always with me. He loves you too! You are so precious and beloved to Him!
With love,
Leslie
Monday, June 25, 2007
Our Week - 6/25-6/30
I thought I'd share a quick look at our week ahead. We have a lot going on and would love prayers on some things too.
Monday - My house is CLEAN!!! I love it! It is so nice to look around and see clean. It happened in about 2 hours as 3 gals swept in and cleaned it all. This was a gift from some of my friends and it is soooo nice! I wish I could do the same in keeping it clean. I probably should have done a better job in training my children. No guilt now though - just going to enjoy my clean house.
We also got naps today - well 5 of us did anyway. :-) I was very happy to be one of them!
Tuesday - We have no plans! I've always appreciated days like this and think that I will come to appreciate them even more given all the many, many appointments we have had for Eliana over the last 6 months.
Wednesday - Feeding therapy in the morning. Eliana is eating some solid foods now. I am trying one meal per day and may up that soon. Yesterday she had applesauce and seemed OK with it. She doesn't really seem to like it or dislike it for that matter.
Bottle feeding is horrible. She will often take one swallow - and then not be willing to take any more. I'm not sure if it's pain or what. I just see no improvement at all.
Thursday - Three of my children have eye appointments including Eliana. It's her first one. I'm really hoping and hoping that she has no eye issues. For those that have seen pictures you know that all of our boys have glasses and some significant vision issues. Rebecca has had some mild vision issues and wore glasses for a short time to help prevent any deterioration of her vision. (It was 20/30 in one eye I think. Not enough of a problem that she even really noticed.) The interesting thing is that neither Roger or I wear glasses. We obviously have something on one of the genes though!
I know that children with DS can often have vision problems related to that. I'm just hoping/praying that she doesn't. I really don't want to have to deal with glasses right now. I know that if she needs them that we will do it, but I just don't want to. I want her to have a break with something.
Christopher is hoping to get fitted for contacts then. We tried briefly last summer but he seems more motivated now.
In the evening, Roger's sister and her family will be arriving from Nebraska to stay for a week. We are very much looking forward to having them visit!!! It has been a long time since the cousins have seen each other and our nieces haven't yet met Daniel or Eliana.
Friday - The appointment with the surgeon - or someone working in surgery - to discuss the possibility of a G-tube for Eliana. I'm starting a list of questions. If any of you reading have ideas or suggestions, please let me know! I'm hoping that we will have more information after this meeting. I'm not sure what all will be done at that meeting. I know that we are supposed to take her in on an empty stomach. That won't be hard since she doesn't really fuss for food.
Saturday - Fun with our cousins/aunt/uncle! Not sure what we'll be doing yet. I'm sure it will be fun.
We would love prayers for the upcoming appointments for Eliana - eye and surgery. Prayers for clear answers, wisdom for the doctors, discernment for us for any decisions that need to be made and for the best options for Eliana to be what is available to her. I will update as I can. I'm looking forward to the appointments but also a little anxious about what we will hear. Thank you dear friends for standing with us in prayer!
Love,
Leslie
PS. I typed this earlier in the day and was waiting to post to add in a picture. I didn't realize that I'd also have a bit more news to share. #34 was tonight. That is the number of times I've put in her NG tube. Christopher even asked me if I thought I could get a job as a NICU nurse after my experience with Eliana. I laughed - there is way more to that job that I know how to do. Though I know a lot more about it now than I did 6 months ago.
Here's a photo of Eliana from last Thur - the last time she pulled her tube. Tonight I found it pulled after she had been sleeping on her tummy (she rolled over while sleeping) and then rubbing her face on the mattress. So even the really great placement up the front of the face is not too tough for our little girl. Thankfully it still stays in much better there!
Monday - My house is CLEAN!!! I love it! It is so nice to look around and see clean. It happened in about 2 hours as 3 gals swept in and cleaned it all. This was a gift from some of my friends and it is soooo nice! I wish I could do the same in keeping it clean. I probably should have done a better job in training my children. No guilt now though - just going to enjoy my clean house.
We also got naps today - well 5 of us did anyway. :-) I was very happy to be one of them!
Tuesday - We have no plans! I've always appreciated days like this and think that I will come to appreciate them even more given all the many, many appointments we have had for Eliana over the last 6 months.
Wednesday - Feeding therapy in the morning. Eliana is eating some solid foods now. I am trying one meal per day and may up that soon. Yesterday she had applesauce and seemed OK with it. She doesn't really seem to like it or dislike it for that matter.
Bottle feeding is horrible. She will often take one swallow - and then not be willing to take any more. I'm not sure if it's pain or what. I just see no improvement at all.
Thursday - Three of my children have eye appointments including Eliana. It's her first one. I'm really hoping and hoping that she has no eye issues. For those that have seen pictures you know that all of our boys have glasses and some significant vision issues. Rebecca has had some mild vision issues and wore glasses for a short time to help prevent any deterioration of her vision. (It was 20/30 in one eye I think. Not enough of a problem that she even really noticed.) The interesting thing is that neither Roger or I wear glasses. We obviously have something on one of the genes though!
I know that children with DS can often have vision problems related to that. I'm just hoping/praying that she doesn't. I really don't want to have to deal with glasses right now. I know that if she needs them that we will do it, but I just don't want to. I want her to have a break with something.
Christopher is hoping to get fitted for contacts then. We tried briefly last summer but he seems more motivated now.
In the evening, Roger's sister and her family will be arriving from Nebraska to stay for a week. We are very much looking forward to having them visit!!! It has been a long time since the cousins have seen each other and our nieces haven't yet met Daniel or Eliana.
Friday - The appointment with the surgeon - or someone working in surgery - to discuss the possibility of a G-tube for Eliana. I'm starting a list of questions. If any of you reading have ideas or suggestions, please let me know! I'm hoping that we will have more information after this meeting. I'm not sure what all will be done at that meeting. I know that we are supposed to take her in on an empty stomach. That won't be hard since she doesn't really fuss for food.
Saturday - Fun with our cousins/aunt/uncle! Not sure what we'll be doing yet. I'm sure it will be fun.
We would love prayers for the upcoming appointments for Eliana - eye and surgery. Prayers for clear answers, wisdom for the doctors, discernment for us for any decisions that need to be made and for the best options for Eliana to be what is available to her. I will update as I can. I'm looking forward to the appointments but also a little anxious about what we will hear. Thank you dear friends for standing with us in prayer!
Love,
Leslie
PS. I typed this earlier in the day and was waiting to post to add in a picture. I didn't realize that I'd also have a bit more news to share. #34 was tonight. That is the number of times I've put in her NG tube. Christopher even asked me if I thought I could get a job as a NICU nurse after my experience with Eliana. I laughed - there is way more to that job that I know how to do. Though I know a lot more about it now than I did 6 months ago.
Here's a photo of Eliana from last Thur - the last time she pulled her tube. Tonight I found it pulled after she had been sleeping on her tummy (she rolled over while sleeping) and then rubbing her face on the mattress. So even the really great placement up the front of the face is not too tough for our little girl. Thankfully it still stays in much better there!
Sunday, June 24, 2007
Birthday Party
Just a few notes on our sweet boy's birthday! We worked on the list trying to get as much done as we could.
Roger and the children went to the party store to pick out balloons and paper goods. Daniel selected a firefighter theme. I couldn't believe it! I've been trying to talk one of the boys into this theme for years thinking that it would be such fun. Go figure on the year when we are really doing nothing big - they pick the theme that I wanted.
Lunch out at McDonalds. It's Daniel's favorite spot - though he only wants to eat the french fries (and have chocolate milk to drink). Watched a show in the afternoon. Played at the park in our neighborhood. Did get to play with the keys. (Not sure why he likes these so much!)
We made the cake and decorated with streamers and balloons. We had a few friends come by. My 5yo was especially disappointed that we hadn't invited more friends and I really couldn't help him understand that I wasn't up to a big party - and it didn't matter to Daniel.
Daniel opened his gifts. Everything was a hit from a red car to a pirate book to the Lightning McQueen flashlight. We gave him a wagon. When the gift was brought in it was covered by a large blanket. Instead of pulling the blanket off of the gift - Daniel just crawled up under the blanket.
Next we had cake and ice cream - chocolate cake with chocolate frosting. Boy was he happy about this! He blew out the candles (6 of them because they were all cute and I thought I might as well use them all.) It took a few tries to get them out, but he did.
Finally we went outside. Rebecca had helped me plan a few games - a search game for firefighter figures and vehicles and a relay with water ("Bucket Brigade"). Daniel wasn't interested in either but rather just wanted to ride on the jeep. He likes to ride fast too! One day Roger cut the speed down to slow and Daniel put his head on the steering wheel and cried. Oh boy, we may be in trouble in another 12 years. LOL
That was it. A simple day, but lots of fun too! Maybe I should rethink having elaborate parties.
Blessings,
Leslie
Roger and the children went to the party store to pick out balloons and paper goods. Daniel selected a firefighter theme. I couldn't believe it! I've been trying to talk one of the boys into this theme for years thinking that it would be such fun. Go figure on the year when we are really doing nothing big - they pick the theme that I wanted.
Lunch out at McDonalds. It's Daniel's favorite spot - though he only wants to eat the french fries (and have chocolate milk to drink). Watched a show in the afternoon. Played at the park in our neighborhood. Did get to play with the keys. (Not sure why he likes these so much!)
We made the cake and decorated with streamers and balloons. We had a few friends come by. My 5yo was especially disappointed that we hadn't invited more friends and I really couldn't help him understand that I wasn't up to a big party - and it didn't matter to Daniel.
Daniel opened his gifts. Everything was a hit from a red car to a pirate book to the Lightning McQueen flashlight. We gave him a wagon. When the gift was brought in it was covered by a large blanket. Instead of pulling the blanket off of the gift - Daniel just crawled up under the blanket.
Next we had cake and ice cream - chocolate cake with chocolate frosting. Boy was he happy about this! He blew out the candles (6 of them because they were all cute and I thought I might as well use them all.) It took a few tries to get them out, but he did.Finally we went outside. Rebecca had helped me plan a few games - a search game for firefighter figures and vehicles and a relay with water ("Bucket Brigade"). Daniel wasn't interested in either but rather just wanted to ride on the jeep. He likes to ride fast too! One day Roger cut the speed down to slow and Daniel put his head on the steering wheel and cried. Oh boy, we may be in trouble in another 12 years. LOL
That was it. A simple day, but lots of fun too! Maybe I should rethink having elaborate parties.
Blessings,
Leslie
Friday, June 22, 2007
Wednesday, June 20, 2007
The Last Day of "2"
That is 2 years old for my sweet Daniel. My day with him started early - at about 2:30am when he was crying. Not sure if he was having bad dreams, but he definitely wanted someone with him. I loved how he reached out for me and then held my hand. I looked at his still small hand in mine and remembered 3 years ago when I was waiting to meet him. Anxious to know if he was a boy or girl, excited to see what he looked like and thrilled to know that soon we would have a new member in our family. I love my children so much and looking back has always been both sweet and satisfying to my spirit. It's one of the reasons that I love to scrapbook.
These 3 years have been sweet. Daniel has an infectious smile, a mischievous grin and a delightful personality. He comes up to me many times a day wanting to give a "kiss and hug". Never mind that it really only includes a hug most of the time - to him they are a package deal. Daniel laughs often, loves easily and brings such joy to our lives! He is so much fun!!! I think 2 year olds get a bad rap - it really is a delightful age.
This morning, Rebecca asked Daniel what things he would like to do for his birthday tomorrow. It's our tradition to allow the birthday child to choose the meals and the activities for the day. Rebecca made a list of the things that he said.
Oh, this list made me chuckle! I'm not sure where some of them came from - like a basketball game - since he doesn't play! All in all it looks to be a fun day and that it will be an easy thing to please this little fellow. (Below is one of the 95 photos he took recently.)
One other sweet moment with my littlest man was at naptime. He was awakened before he was ready and came into my room looking a little out of sorts. I told him to climb up on my bed and he snuggled up next to me and fell asleep. He had my arm pulled over his chest which reminded me of my first little boy when he was that age. It was the way that he felt secure and safe. It is a memory that was sweet to me then and even sweeter all these years later. I enjoy cuddling with a sleeping child. It starts early with mine as I hold my sleeping infants as much as I can.
Tonight Roger took the children to Toys R Us to pick out a gift for Daniel. We were looking for something to play with outside. They chose a wagon. We've considered one for years, but have never had one. I hope he'll enjoy it! I think Eliana will too one day.
While they were out, Eliana and I went to Babies R Us to buy a few things. It's a new store near our home and it was my first time there. I did something I haven't done before - I bought formula. So what, you may be thinking. I'm not sure why, but it was hard for me. You'd think I could just give it up, but after nursing 5 children (and loving it) this was a hard thing for me to let go of both then and now. Sometimes it is just the little reminders that things aren't the way that I had hoped. We haven't gone out much either and at times it is hard to have people "ignore" your child. :-( I'm sure people don't know what to say.
One other thing that was hard today. Eliana ate nothing from her bottle. She took a few sips a couple of times but I'm not even sure if she swallowed at all. I think even in the midst of heart failure she always took at least something. I remember one day, close to her surgery, where I thought she might go all day without eating orally. She finally took almost an ounce at her last feeding of the day. This was a first that I didn't like to see. :-( It confirms that going with the G-tube is going to be for the best for my sweet girl.
On a happier note, I wanted to share a little video clip. I hope it works.
ETA: It didn't work. I'm not sure how to add it, though I know there is a way. I'll post it when it gets figured out. If anyone knows how to help me, please do. Kristina?
I tried to get a shot of Christopher with Eliana that showed how much they love each other. Tonight they were sitting beside each other on the sofa and as I looked over I saw her looking up at him. What a lucky little girl! She is blessed with 4 big brothers and a big sister too! They all adore her and the feeling is mutual. Christopher loves playing with Eliana and will frequently come and swoop her away from me or out of her crib. I love seeing him with her - loving her and enjoying her and finding her delightful. I pray that their relationship will always be like this.
Tomorrow we will be celebrating Daniel. As a funny, I've been asking him recently how old he was. When he didn't answer, I would tell him that he was two. Sometimes I would add that he would "soon be three". His response was always "No I'm not. I'm Daniel." So very thankful for my precious little boy!
With love
Leslie
These 3 years have been sweet. Daniel has an infectious smile, a mischievous grin and a delightful personality. He comes up to me many times a day wanting to give a "kiss and hug". Never mind that it really only includes a hug most of the time - to him they are a package deal. Daniel laughs often, loves easily and brings such joy to our lives! He is so much fun!!! I think 2 year olds get a bad rap - it really is a delightful age.
This morning, Rebecca asked Daniel what things he would like to do for his birthday tomorrow. It's our tradition to allow the birthday child to choose the meals and the activities for the day. Rebecca made a list of the things that he said.
- Turn the key in Daddy's car (he is fascinated with our vehicles!)
- Turn the key in Mommy's car
- Mickey Mouse movie
- Go see Mrs. Yvette
- Read book
- People lay on pillows and sleep (I want to do this one!)
- Eat birthday cake
- Caillou movie
- Birthday present
- Basketball game
Oh, this list made me chuckle! I'm not sure where some of them came from - like a basketball game - since he doesn't play! All in all it looks to be a fun day and that it will be an easy thing to please this little fellow. (Below is one of the 95 photos he took recently.)
One other sweet moment with my littlest man was at naptime. He was awakened before he was ready and came into my room looking a little out of sorts. I told him to climb up on my bed and he snuggled up next to me and fell asleep. He had my arm pulled over his chest which reminded me of my first little boy when he was that age. It was the way that he felt secure and safe. It is a memory that was sweet to me then and even sweeter all these years later. I enjoy cuddling with a sleeping child. It starts early with mine as I hold my sleeping infants as much as I can.
Tonight Roger took the children to Toys R Us to pick out a gift for Daniel. We were looking for something to play with outside. They chose a wagon. We've considered one for years, but have never had one. I hope he'll enjoy it! I think Eliana will too one day.
While they were out, Eliana and I went to Babies R Us to buy a few things. It's a new store near our home and it was my first time there. I did something I haven't done before - I bought formula. So what, you may be thinking. I'm not sure why, but it was hard for me. You'd think I could just give it up, but after nursing 5 children (and loving it) this was a hard thing for me to let go of both then and now. Sometimes it is just the little reminders that things aren't the way that I had hoped. We haven't gone out much either and at times it is hard to have people "ignore" your child. :-( I'm sure people don't know what to say.
One other thing that was hard today. Eliana ate nothing from her bottle. She took a few sips a couple of times but I'm not even sure if she swallowed at all. I think even in the midst of heart failure she always took at least something. I remember one day, close to her surgery, where I thought she might go all day without eating orally. She finally took almost an ounce at her last feeding of the day. This was a first that I didn't like to see. :-( It confirms that going with the G-tube is going to be for the best for my sweet girl.
On a happier note, I wanted to share a little video clip. I hope it works.
ETA: It didn't work. I'm not sure how to add it, though I know there is a way. I'll post it when it gets figured out. If anyone knows how to help me, please do. Kristina?
I tried to get a shot of Christopher with Eliana that showed how much they love each other. Tonight they were sitting beside each other on the sofa and as I looked over I saw her looking up at him. What a lucky little girl! She is blessed with 4 big brothers and a big sister too! They all adore her and the feeling is mutual. Christopher loves playing with Eliana and will frequently come and swoop her away from me or out of her crib. I love seeing him with her - loving her and enjoying her and finding her delightful. I pray that their relationship will always be like this.
Tomorrow we will be celebrating Daniel. As a funny, I've been asking him recently how old he was. When he didn't answer, I would tell him that he was two. Sometimes I would add that he would "soon be three". His response was always "No I'm not. I'm Daniel." So very thankful for my precious little boy!
With love
Leslie
Tuesday, June 19, 2007
News from Tuesday
We have had a good couple of days. I'm feeling much better and am so thankful for the many faithful prayer warriers that are lifting up our family. I am truly blessed to be a part of the body of Christ - and honestly have never felt such a part as I have these last 6 months. I've never been on the receiving end of so much love, care, encouragment and support. It has been a blessing beyond words.
I'll try to highlight a little of what has been going on around here.
TESTING: Well, we are 2/3 finished with testing here. Yippee!!! Hopefully we will finish up tomorrow. This is Joshua's (7) first year testing and he is doing really well. He is having fun with it and not letting it stress him at all. Rebecca wondered what would happen if she did poorly and I reassured her that nothing bad would happen. I know that she has learned a LOT this year. She has started her own non-profit and raised a large sum of money for an 11yo! She has learned more about medical issues and procedures than I ever knew as a child - and for most of my life as an adult too. She has learned more about caring for children and having compassion on others than I could have taught with a character lesson. The test may not measure all of these things - but she has learned! We all have!
BLESSINGS: I think I shared that some friends pooled money to hire a cleaning service to come in to do a thorough one-time cleaning. It was fabulous! I've had individuals clean once or twice, but these two gals worked so well as a team and got soooo much done! It was so nice! Well I just received a phone call from the cleaning service that my friends have again paid for a cleaning for our house. I just cried tears of happiness and blessing to hear this. What a sweet gift - though not as sweet as the precious ladies that I call friends! Thank you!
FEEDING: Things are just getting worse. I'm not sure if she has "lost" her suck or is in pain or what. I had hoped for a magic bullet, hoped that things would improve and hoped that one day we would just turn the corner. That hasn't happened and honestly, I don't think that it will now - and neither do any of her therapists or doctors. She is averaging 1-2 ounces per day by bottle now. (Total consumed is 28 ounces.)
We have tried some solid foods - rice cereal and applesauce. She doesn't seem to mind either, though I'm not sure how much is going in. I know that a lot of it goes back out, though it did with my other children too. This isn't the most flattering picture, but I thought it was funny.
Today while at feeding therapy, she did swallow some of the rice cereal and began to cry. This led the therapist to think that she is having pain. :-( Poor little girl. It has just been too much. She is still taking the prevacid which should help if there is pain/irritation and also any reflux that would just hurt.
Sometimes I look back and wonder what I could or should have done differently. Not to blame myself or anyone else. I know that we have all done the best that we could. I just wonder sometimes if things could be different. *sigh* The day after surgery she did a great job eating! I think she was weaned too quickly from her meds and honestly maybe sent home too soon as well. (More time in the hospital would have gotten her feeding therapy daily.) She was in a lot of pain and it took almost a week to get her comfortable again. Enough reflecting as it can't be changed now. We were focused on her heart as that was the top priority. I have been assured that she will eat - it just may take time and a lot of hard work to get there.
Now that she is more physically active, she adds her own challenges to feeding. The tube pulling has been the worst! On a note of praise - the current tube has been in for 9 days!!! I think that is a record! The newest challenge is rolling over. We have her bed on an incline as well as a roll of blankets making a little nest around her to help keep her upright. When she rolls over, she often gets stuck on the roll and then has a hard time lifting her head up as well. I'm not sure why she keeps doing it. Perhaps because she can
If you look in the picture you can see the feeding tube attached to the top of her head with the red port showing.
BIRTHDAY COMING: Our sweet Daniel has a birthday coming up soon! I haven't done any planning. I love planning parties and we typically really go all out for them. Well, this year is going to be different for all of us. Thankfully his wants are simple - chocolate cake with candles and eating at McDonalds. We can do that! We are trying to think of a few fun things to do on that day that would make it even more fun for him. I'll definitely post what we are up to - and pictures too of course.
Something silly about me: Today as I was headed to Eliana's feeding therapy I decided to treat myself to a drink. I stopped at Wendy's and saw a picture of a float. It looked good and I ordered it. I wasn't given an option of flavors and when it arrived, it looked like a coke. I haven't had a coke in 3 years and 1 day. (Yes, I know to the day as it was just a couple of days before Daniel was born.) I had many of them prior to that. During my pregnancies it was one of the few things I could keep down. I decided just before Daniel was born that I could probably make it until birth and decided to give it up for health reasons. I haven't been willing to try it since. I loved coke! I think if I tried it and realized how much I've been missing ... well, I'd be a goner. I'm truly surprised I haven't given in during the last 6 months. There are many times I could have used some caffeine! Anyway, as I looked at it and debated, I saw a friend just ahead of me waiting for food. I handed over the drink and hope that someone in their family was able to enjoy it. ;-) I do miss a good coke! :-)
A silly about Daniel: As we were downloading pictures from the cameras tonight, we noticed some that Daniel had taken. He's almost 3yo. It was obvious he was the culprit as he took some of himself and a number of Isaiah as well as items around the house. As I looked at the photos, I noticed that there were more and more of them. He took 95 pictures!!! I couldn't believe he took so many. He must have had the zoom up as most of them were so close as not to be any good. They are funny though.
One last photo. I have to have at least one cute one in here. I'm proud of myself as I figured out how to post these to photobucket and upload them. I haven't figured out how to post a video though. We have a really cute one of Eliana laughing that I would love to share.
Finishing up our last feeding of the day. It is time to go to bed soon. As usual, I'm exhausted.
Love to you all,
Leslie
I'll try to highlight a little of what has been going on around here.
TESTING: Well, we are 2/3 finished with testing here. Yippee!!! Hopefully we will finish up tomorrow. This is Joshua's (7) first year testing and he is doing really well. He is having fun with it and not letting it stress him at all. Rebecca wondered what would happen if she did poorly and I reassured her that nothing bad would happen. I know that she has learned a LOT this year. She has started her own non-profit and raised a large sum of money for an 11yo! She has learned more about medical issues and procedures than I ever knew as a child - and for most of my life as an adult too. She has learned more about caring for children and having compassion on others than I could have taught with a character lesson. The test may not measure all of these things - but she has learned! We all have!
BLESSINGS: I think I shared that some friends pooled money to hire a cleaning service to come in to do a thorough one-time cleaning. It was fabulous! I've had individuals clean once or twice, but these two gals worked so well as a team and got soooo much done! It was so nice! Well I just received a phone call from the cleaning service that my friends have again paid for a cleaning for our house. I just cried tears of happiness and blessing to hear this. What a sweet gift - though not as sweet as the precious ladies that I call friends! Thank you!
FEEDING: Things are just getting worse. I'm not sure if she has "lost" her suck or is in pain or what. I had hoped for a magic bullet, hoped that things would improve and hoped that one day we would just turn the corner. That hasn't happened and honestly, I don't think that it will now - and neither do any of her therapists or doctors. She is averaging 1-2 ounces per day by bottle now. (Total consumed is 28 ounces.)
We have tried some solid foods - rice cereal and applesauce. She doesn't seem to mind either, though I'm not sure how much is going in. I know that a lot of it goes back out, though it did with my other children too. This isn't the most flattering picture, but I thought it was funny.
Today while at feeding therapy, she did swallow some of the rice cereal and began to cry. This led the therapist to think that she is having pain. :-( Poor little girl. It has just been too much. She is still taking the prevacid which should help if there is pain/irritation and also any reflux that would just hurt.
Sometimes I look back and wonder what I could or should have done differently. Not to blame myself or anyone else. I know that we have all done the best that we could. I just wonder sometimes if things could be different. *sigh* The day after surgery she did a great job eating! I think she was weaned too quickly from her meds and honestly maybe sent home too soon as well. (More time in the hospital would have gotten her feeding therapy daily.) She was in a lot of pain and it took almost a week to get her comfortable again. Enough reflecting as it can't be changed now. We were focused on her heart as that was the top priority. I have been assured that she will eat - it just may take time and a lot of hard work to get there.
Now that she is more physically active, she adds her own challenges to feeding. The tube pulling has been the worst! On a note of praise - the current tube has been in for 9 days!!! I think that is a record! The newest challenge is rolling over. We have her bed on an incline as well as a roll of blankets making a little nest around her to help keep her upright. When she rolls over, she often gets stuck on the roll and then has a hard time lifting her head up as well. I'm not sure why she keeps doing it. Perhaps because she can
If you look in the picture you can see the feeding tube attached to the top of her head with the red port showing.
BIRTHDAY COMING: Our sweet Daniel has a birthday coming up soon! I haven't done any planning. I love planning parties and we typically really go all out for them. Well, this year is going to be different for all of us. Thankfully his wants are simple - chocolate cake with candles and eating at McDonalds. We can do that! We are trying to think of a few fun things to do on that day that would make it even more fun for him. I'll definitely post what we are up to - and pictures too of course.
Something silly about me: Today as I was headed to Eliana's feeding therapy I decided to treat myself to a drink. I stopped at Wendy's and saw a picture of a float. It looked good and I ordered it. I wasn't given an option of flavors and when it arrived, it looked like a coke. I haven't had a coke in 3 years and 1 day. (Yes, I know to the day as it was just a couple of days before Daniel was born.) I had many of them prior to that. During my pregnancies it was one of the few things I could keep down. I decided just before Daniel was born that I could probably make it until birth and decided to give it up for health reasons. I haven't been willing to try it since. I loved coke! I think if I tried it and realized how much I've been missing ... well, I'd be a goner. I'm truly surprised I haven't given in during the last 6 months. There are many times I could have used some caffeine! Anyway, as I looked at it and debated, I saw a friend just ahead of me waiting for food. I handed over the drink and hope that someone in their family was able to enjoy it. ;-) I do miss a good coke! :-)
A silly about Daniel: As we were downloading pictures from the cameras tonight, we noticed some that Daniel had taken. He's almost 3yo. It was obvious he was the culprit as he took some of himself and a number of Isaiah as well as items around the house. As I looked at the photos, I noticed that there were more and more of them. He took 95 pictures!!! I couldn't believe he took so many. He must have had the zoom up as most of them were so close as not to be any good. They are funny though.
One last photo. I have to have at least one cute one in here. I'm proud of myself as I figured out how to post these to photobucket and upload them. I haven't figured out how to post a video though. We have a really cute one of Eliana laughing that I would love to share.
Finishing up our last feeding of the day. It is time to go to bed soon. As usual, I'm exhausted.
Love to you all,
Leslie
Sunday, June 17, 2007
Our week ahead
Just thought I'd share a glimpse into our week.
Monday - I need to start giving standardized tests to my oldest three. It's required by law in NC or I wouldn't consider doing it this year. It will be interesting to see how they score given that their schooling the last 6 months has been a little less than traditional. I expect to see that they have progressed as though they had schooled normally. Even if they don't, they have each learned lessons in compassion, serving others and lots of health/medical issues that won't show up on a test, but will show up again and again in their lives. I'm glad that they are learning lessons that will serve them no matter what they choose to do in life.
Baseball game in the evening with friends. It's a "Family Night" featuring a Christian band and the Veggie Tales (or "Potatoes" as my 2yo calls them - not sure why). Eliana and I won't be going.
Tuesday - Physical therapy at 12:30. Yes, that is right during her feeding time so I'll need to try to adjust it so as not to interfere. She is doing so well in this area that it is fun to see what is coming next. Then she'll have feeding therapy at 5:00. It will help to have her schedule shifted as this is not a normal feeding time for Eliana. It's a good thing we have the night to catch up or adjust schedules as needed. Since she doesn't eat at 3am, it gives me flexibility to give the midnight feeding later if we are behind. If we go out - to an appt, or like today to church, then inevitably we will be behind. I'm an hour behind today due to church, so up later to get in that last feeding.
Wednesday - Nothing! I love days of staying home. It won't be nothing to do as we will need to keep on with the testing.
Feeding is still a struggle. She seems to be getting worse. We have managed to find a way to get her meds in using a syringe. The first one clogged up, but a smaller one seems to be working fine. It is so small that it takes 5-7 times to get the meds in, but Eliana doesn't seem to mind.
Thursday - My sweet Daniel will be 3! How can that be that my baby is 3 already? He is such a joy and delight. He loves to smile and laugh. When I asked him what he wanted for his birthday he told me "chocolate cake". I asked what he wanted on the cake - I was thinking of a theme or decoration. His response was "candles". LOL I think I can manage this! I need to plan some sort of small party for him though I'm not sure when that will happen.
Roger usually takes the day off on the children's birthday and we let them decide what we are going to eat and what we are going to do. It will be fun to see what he is going to pick.
Friday - Nothing scheduled except maybe the science lab for my 14yo. We are behind and have just a couple more to do to finish up the year. He enjoys it so it isn't a problem to keep up with science.
So, that's a glimpse of our week. No medical appointments! Next week we'll have 2 - one with our eye dr and the other with the surgeon for the g-tube.
As usual, it is very very late and Im exhausted. More later. I have some photos of Eliana eating that I want to share with you - and maybe a video clip of her laughing that is too cute!
Love,
Leslie
I came to you in weakness and fear, and with much trembling. My message and my preaching were not with wise and persuasive words, but with a demonstration of the Spririt's power, so that your faith may not rest on men's wisdom but on God's power. 1 Corinthians 2:3-5
Monday - I need to start giving standardized tests to my oldest three. It's required by law in NC or I wouldn't consider doing it this year. It will be interesting to see how they score given that their schooling the last 6 months has been a little less than traditional. I expect to see that they have progressed as though they had schooled normally. Even if they don't, they have each learned lessons in compassion, serving others and lots of health/medical issues that won't show up on a test, but will show up again and again in their lives. I'm glad that they are learning lessons that will serve them no matter what they choose to do in life.
Baseball game in the evening with friends. It's a "Family Night" featuring a Christian band and the Veggie Tales (or "Potatoes" as my 2yo calls them - not sure why). Eliana and I won't be going.
Tuesday - Physical therapy at 12:30. Yes, that is right during her feeding time so I'll need to try to adjust it so as not to interfere. She is doing so well in this area that it is fun to see what is coming next. Then she'll have feeding therapy at 5:00. It will help to have her schedule shifted as this is not a normal feeding time for Eliana. It's a good thing we have the night to catch up or adjust schedules as needed. Since she doesn't eat at 3am, it gives me flexibility to give the midnight feeding later if we are behind. If we go out - to an appt, or like today to church, then inevitably we will be behind. I'm an hour behind today due to church, so up later to get in that last feeding.
Wednesday - Nothing! I love days of staying home. It won't be nothing to do as we will need to keep on with the testing.
Feeding is still a struggle. She seems to be getting worse. We have managed to find a way to get her meds in using a syringe. The first one clogged up, but a smaller one seems to be working fine. It is so small that it takes 5-7 times to get the meds in, but Eliana doesn't seem to mind.
Thursday - My sweet Daniel will be 3! How can that be that my baby is 3 already? He is such a joy and delight. He loves to smile and laugh. When I asked him what he wanted for his birthday he told me "chocolate cake". I asked what he wanted on the cake - I was thinking of a theme or decoration. His response was "candles". LOL I think I can manage this! I need to plan some sort of small party for him though I'm not sure when that will happen.
Roger usually takes the day off on the children's birthday and we let them decide what we are going to eat and what we are going to do. It will be fun to see what he is going to pick.
Friday - Nothing scheduled except maybe the science lab for my 14yo. We are behind and have just a couple more to do to finish up the year. He enjoys it so it isn't a problem to keep up with science.
So, that's a glimpse of our week. No medical appointments! Next week we'll have 2 - one with our eye dr and the other with the surgeon for the g-tube.
As usual, it is very very late and Im exhausted. More later. I have some photos of Eliana eating that I want to share with you - and maybe a video clip of her laughing that is too cute!
Love,
Leslie
I came to you in weakness and fear, and with much trembling. My message and my preaching were not with wise and persuasive words, but with a demonstration of the Spririt's power, so that your faith may not rest on men's wisdom but on God's power. 1 Corinthians 2:3-5
Saturday, June 16, 2007
6 Months Old!
I'm going to have to adjust the date of this posting as it is techicnally already past midnight - but my sweet girl is 6 months old today! It's hard to believe that it's been that long and in other regards it seems much longer. The time has not flown though sometimes I do wonder where it has gone. The haze of the first several months has gone thankfully.
Thank you all so much for your words of encouragment and your prayers when I was feeling so sad the other day. I can't tell you how much it helps! I know I'm being carried. I know I am weak. I pray that God will use this time to mold me into the person that HE wants me to be. I understand that my emotions make some uncomfortable, but they are what they are. I don't need to be "fixed", but know that in time God will do what He wants to with me. I trust that He will guide me, He will restore me and He will fill my heart with His love and peace. What more could I ask for?! (Well, I could probably think of a few things, but in the grand scheme of things this is what matters.)
June 16th - the 16th of each month now has 2 markers on it for me. The first is Eliana's birthdate. The second is the date of her open-heart surgery. It has been two months now. Her heart is strong and doing great! Thank you God for this blessing. A friend of a friend's son went through surgery just a week after Eliana and has had major struggles. In fact, he just recently went home. I thank God for the healing He is doing for so many children - people that I'm following who have children facing some of the same struggles as Eliana.
I'll try to post more tomorrow. As usual it is very late here (2:20am) and I need to head to bed. We had a really fun evening tonight - well, all but poor Isaiah who fell asleep early and missed out on the fun. I tried to wake him, but he was worn out. We'll work on more fun tomorrow.
An early Happy Father's Day to the wonderful men in my life!
With love
Leslie
Thank you all so much for your words of encouragment and your prayers when I was feeling so sad the other day. I can't tell you how much it helps! I know I'm being carried. I know I am weak. I pray that God will use this time to mold me into the person that HE wants me to be. I understand that my emotions make some uncomfortable, but they are what they are. I don't need to be "fixed", but know that in time God will do what He wants to with me. I trust that He will guide me, He will restore me and He will fill my heart with His love and peace. What more could I ask for?! (Well, I could probably think of a few things, but in the grand scheme of things this is what matters.)
June 16th - the 16th of each month now has 2 markers on it for me. The first is Eliana's birthdate. The second is the date of her open-heart surgery. It has been two months now. Her heart is strong and doing great! Thank you God for this blessing. A friend of a friend's son went through surgery just a week after Eliana and has had major struggles. In fact, he just recently went home. I thank God for the healing He is doing for so many children - people that I'm following who have children facing some of the same struggles as Eliana.
I'll try to post more tomorrow. As usual it is very late here (2:20am) and I need to head to bed. We had a really fun evening tonight - well, all but poor Isaiah who fell asleep early and missed out on the fun. I tried to wake him, but he was worn out. We'll work on more fun tomorrow.
An early Happy Father's Day to the wonderful men in my life!
With love
Leslie
Friday, June 15, 2007
Eliana is going to need another surgery
Hi Friends,
I must confess that I've had a very hard morning. I had a good long cry. Well, I'm not sure it felt "good" then, but thankfully it did help me to feel better. I often feel like I'm riding on a roller-coaster - though the highs have been small and sweet like a laugh or giggle from Eliana, a picked flower or a hug from one of my boys or a precious note from my oldest daughter.
I'm struggling with feeling so weak. I wish I could be someone with a testimony of being strong in the midst of all of my struggles. I see what others are going through and their message of hope and strength. I want to be able to share that as well, but there are times when it just feels so heavy. I feel like I'm just not measuring up. I still have so much to learn.
I know that in all of this that it is only through God that I have any hope at all. It is only His strength that carries me from day to day. It is only His love that enables me to function on days when the pain is great. I know that He loves me so very much. Why do I struggle then so much with my feelings? It isn't all the time, but more often that I'm used to feeling. Is it a lack of faith?
I sometimes wonder if I should write or type at all when I'm feeling emotional. I do have many moments of happiness, joy and blessing. I hope that I share those too, though maybe not enough? I have been open about sharing my struggles and sometimes wonder if I should be more private. Should I be working this out privately? Does sharing the struggles cause more harm than good? I have gotten such support though that I continue to just lay myself out there. I think that being honest and real has great benefit - to me and hopefully to others as well. Sometimes though I wonder.
Here are a few of the things for which I would love prayer.
Surgery - Eliana is going to need another one to place a G-tube to help with her feeding issues. :cry: I expected it, but it is not ever something you want to hear. We meet with the surgeon in 2 weeks to have some testing done and find out more. I really don't know what to expect there. I know this is necessary and will be for her good. I also know that there are risks associated with any surgery and wonder about the unknowns associated with having a G-tube.
I do know that in Feb when we were considering the need for a feeding tube that I talked with some people then and decided that the G-tube looked like a better option since the NG sometimes caused oral aversions. The cardiologist decided on NG as it was not a surgery and he wanted no other surgeries at least 6 weeks prior to her heart surgery. He thought we did not have that time. Obviously hind-sight is clearer and we know now that she did have time and unfortunately she also has some (significant?) oral aversions. Her feedings are not improving. In fact, yesterday she took just one ounce orally. Thus far she isn't doing much better today. In fact at her last feeding she was awake, but would cry anytime the bottle touched her mouth. She ate nothing from the bottle.
When meeting with her feeding therapist, she said something about the G-tube and then 18 months. I questioned this - 18 months? That is a long time. She replied that many people had them for years! *sigh* So many struggles for so long.
She is making great improvments in the physical areas though and it is fun to see her learning new things. It's quite a different path to have to "teach" so many, many things that other children learn on their own and that we just take for granted that they will learn to do. Things that she might learn to do "wrong" which would affect her body in adverse ways. I'm glad that someone has figured this out, though I wish for a simpler way. Yesterday during her PT (physical therapy) appointment she did very well. Her therapist is marking her progress on a chart and she is advancing quickly.
Not surprisingly, being in heart failure for 3 months and then recovery did inhibit her development. She is making great strides though. She advanced 2 weeks worth in the last week. She is not on the chart yet for a typically developing child, but she is close and we hope she will be on it soon. I know that she is expected to be delayed, but we can still work and do what we can to give her every opportunity to develop as best she can.
Being at the hospital yesterday with Catherine was one of the most beautiful and amazing experiences. I am so very thankful to have been allowed this experience with my friend. Leaving the hospital though just washed emotions over me of feelings of failure and sadness (birth experience, loss of dreams, breastfeeding and even my emotions over everything). I didn't expect this and it has been hard. I hope that doesn't sound awful. How can I feel this after being given such a gift? I think it just brought things back to me.
Catherine's move is coming closer. This birth was always the signal that the end was near. Something neither of us have really wanted to face. :cry: Please keep praying for her as she will be leaving all of her friends. We both have many treasured and precious friendships here. A blessing I will continue to have physically close and she will not.
Sometimes it just hits me. Like when I was arranging meals and the list of dates wasn't nearly long enough. Or when I was driving home having just heard that Eliana will need surgery and wishing she was home so I could tell her. I knew I could call, but just wanted a hug. Because I knew what she was doing, I knew she'd be gone already. Then the thought crossed my mind that sometime soon, whenever I wanted her to be home that she wouldn't be there at all.
Now I'm wondering if I should even post all of this. Sharing sometimes puts you in a very vulnerable position. I'm feeling weak, selfish and a failure. I know that God can use this for good. I do trust Him or at least I'm trying to. Could you pray? If you have some verses of encouragment I would love those too. My reading this morning wasn't the best choice.
I appreciate the many times people have written to encourage me. I appreciate so much that others are finding help in reading some of what we are going through. I know that when I am reading of the struggles that others are going through it does help me to find many things in my own life to be thankful for. I hope that I don't come across as ungrateful - I am thankful for so many things! This path has just been hard. I know that for some people it's hard to be around someone that is struggling so very much. I am trusting that God will continue to use this for good. I truly don't understand though I know God to be good. Very good.
Love to you all,
I must confess that I've had a very hard morning. I had a good long cry. Well, I'm not sure it felt "good" then, but thankfully it did help me to feel better. I often feel like I'm riding on a roller-coaster - though the highs have been small and sweet like a laugh or giggle from Eliana, a picked flower or a hug from one of my boys or a precious note from my oldest daughter.
I'm struggling with feeling so weak. I wish I could be someone with a testimony of being strong in the midst of all of my struggles. I see what others are going through and their message of hope and strength. I want to be able to share that as well, but there are times when it just feels so heavy. I feel like I'm just not measuring up. I still have so much to learn.
I know that in all of this that it is only through God that I have any hope at all. It is only His strength that carries me from day to day. It is only His love that enables me to function on days when the pain is great. I know that He loves me so very much. Why do I struggle then so much with my feelings? It isn't all the time, but more often that I'm used to feeling. Is it a lack of faith?
I sometimes wonder if I should write or type at all when I'm feeling emotional. I do have many moments of happiness, joy and blessing. I hope that I share those too, though maybe not enough? I have been open about sharing my struggles and sometimes wonder if I should be more private. Should I be working this out privately? Does sharing the struggles cause more harm than good? I have gotten such support though that I continue to just lay myself out there. I think that being honest and real has great benefit - to me and hopefully to others as well. Sometimes though I wonder.
Here are a few of the things for which I would love prayer.
Surgery - Eliana is going to need another one to place a G-tube to help with her feeding issues. :cry: I expected it, but it is not ever something you want to hear. We meet with the surgeon in 2 weeks to have some testing done and find out more. I really don't know what to expect there. I know this is necessary and will be for her good. I also know that there are risks associated with any surgery and wonder about the unknowns associated with having a G-tube.
I do know that in Feb when we were considering the need for a feeding tube that I talked with some people then and decided that the G-tube looked like a better option since the NG sometimes caused oral aversions. The cardiologist decided on NG as it was not a surgery and he wanted no other surgeries at least 6 weeks prior to her heart surgery. He thought we did not have that time. Obviously hind-sight is clearer and we know now that she did have time and unfortunately she also has some (significant?) oral aversions. Her feedings are not improving. In fact, yesterday she took just one ounce orally. Thus far she isn't doing much better today. In fact at her last feeding she was awake, but would cry anytime the bottle touched her mouth. She ate nothing from the bottle.
When meeting with her feeding therapist, she said something about the G-tube and then 18 months. I questioned this - 18 months? That is a long time. She replied that many people had them for years! *sigh* So many struggles for so long.
She is making great improvments in the physical areas though and it is fun to see her learning new things. It's quite a different path to have to "teach" so many, many things that other children learn on their own and that we just take for granted that they will learn to do. Things that she might learn to do "wrong" which would affect her body in adverse ways. I'm glad that someone has figured this out, though I wish for a simpler way. Yesterday during her PT (physical therapy) appointment she did very well. Her therapist is marking her progress on a chart and she is advancing quickly.
Not surprisingly, being in heart failure for 3 months and then recovery did inhibit her development. She is making great strides though. She advanced 2 weeks worth in the last week. She is not on the chart yet for a typically developing child, but she is close and we hope she will be on it soon. I know that she is expected to be delayed, but we can still work and do what we can to give her every opportunity to develop as best she can.
Being at the hospital yesterday with Catherine was one of the most beautiful and amazing experiences. I am so very thankful to have been allowed this experience with my friend. Leaving the hospital though just washed emotions over me of feelings of failure and sadness (birth experience, loss of dreams, breastfeeding and even my emotions over everything). I didn't expect this and it has been hard. I hope that doesn't sound awful. How can I feel this after being given such a gift? I think it just brought things back to me.
Catherine's move is coming closer. This birth was always the signal that the end was near. Something neither of us have really wanted to face. :cry: Please keep praying for her as she will be leaving all of her friends. We both have many treasured and precious friendships here. A blessing I will continue to have physically close and she will not.
Sometimes it just hits me. Like when I was arranging meals and the list of dates wasn't nearly long enough. Or when I was driving home having just heard that Eliana will need surgery and wishing she was home so I could tell her. I knew I could call, but just wanted a hug. Because I knew what she was doing, I knew she'd be gone already. Then the thought crossed my mind that sometime soon, whenever I wanted her to be home that she wouldn't be there at all.
Now I'm wondering if I should even post all of this. Sharing sometimes puts you in a very vulnerable position. I'm feeling weak, selfish and a failure. I know that God can use this for good. I do trust Him or at least I'm trying to. Could you pray? If you have some verses of encouragment I would love those too. My reading this morning wasn't the best choice.
I appreciate the many times people have written to encourage me. I appreciate so much that others are finding help in reading some of what we are going through. I know that when I am reading of the struggles that others are going through it does help me to find many things in my own life to be thankful for. I hope that I don't come across as ungrateful - I am thankful for so many things! This path has just been hard. I know that for some people it's hard to be around someone that is struggling so very much. I am trusting that God will continue to use this for good. I truly don't understand though I know God to be good. Very good.
Love to you all,
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