Barnes Family Update - Ken, Rachel, Jack and Luke

Valentine's Day

2012-02-14T03:16:00.001-06:00

I am not a crafty person. I wish and dream of being the kind of person that can make an elegant amazingly beautiful chandelier from macaroni noodles but if I tried it would turn into a disaster ending up in the trash. And then Ken would be mad at me for spending money on items that ended up in the trash AND for wasting noodles!

Enter Pinterest.....I have tons of stuff pinned but I doubt I will even do a 1/3 of the items I have pinned. I have done 2 crafty items and several recipes. The crafts turned out well but the recipes are about 50/50 right now. Tonight I worked on the boys Valentine's day gift to their teachers and therapist. I am pretty proud of how it turned out! It will be filled with Hershey kisses and other candies. It was easier (and cheaper) to have a community gift than try to remember everyone and get each person an individual gift. (Christmas they all got their own gifts)

Here is my project.....

Blog Name....

2012-02-05T20:52:00.000-06:00

Ken and I have been playing with the idea of doing our own web page but can never think of a name. We want to do it on several things--Tube Feeding products and ideas, Cooking for Rachel (trying recipes both gluten free and not), and Ken would be a blog about sports, baby shopping deals, and multiple other items. We want to know what you thing we should name the blog (the web address would be). We don't want our name in the address but it can be something about twins, stay at home dad, working mommy--basically anything but our name! The site would be totally separate of this site and updates on Luke and our family would still come here.
So...What do you think?

Make a comment to the post, Facebook message a name, text us (if you have our number), or email us.

Thanks!
Rachel

Feeding Tube Awareness week....

2012-02-04T22:01:00.001-06:00

Make a video - it's fun, easy and free!
www.onetruemedia.com

Jack and Luke are about halfway through. The picture below is the one we used. I love my tubie and very proud to be his mommy!

Pray For Luke Tomorrow

2012-02-02T18:02:00.001-06:00

Luke has had a runny nose and deep cough for almost two weeks and we've been using his oxygen at night. It surprised us that he stayed the same without getting really sick - normally if he doesn't improve after a couple of days, Luke gets really bad really fast. He has been much better the last two days, so tomorrow (Friday) we will try to get his labwork done after school.

The GI doctor wants one more check of his liver function before we decide to do a liver biopsy or not. Please pray for Luke tomorrow - especially around 4:30pm when we're at the hospital.

Waiting until healthy....

2012-01-27T10:46:00.001-06:00

Just letting all you know Luke still has a pretty good cold so lab work will either be late next week or later.

Will keep you updated!
thanks,
R

This is Luke's Year....

2012-01-21T13:21:00.002-06:00

Right after New Years we heard a sermon that is going to define our year. It was the "One Thing" sermon by Darren Delaune. Here is the sermon (click here to watch the video) with some paraphrasing and shortening:

Darren asked "What's going to be different in 2012?"

¹⁸ “Forget the former things;
   do not dwell on the past.
¹⁹ See, I am doing a new thing!
   Now it springs up; do you not perceive it?
I am making a way in the wilderness
   and streams in the wasteland. Isaiah 43:18-19

What is the ONE THING you want God to do in you and through you?

Are you confident that God can do a new thing in you?

⁶ being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus. Philippians 1:6

He asked what is the ONE THING that is heavy on your heart and you want God to change. 2011 is gone and with this new year we need to pick ONE THING for God to fix and make better. Both Ken and I immediately thought about Luke. 2011 was a hard year for our family. It was the hardest on our marriage, Luke has had many procedures and labs and all without results that give us answers. Everything has come back normal which is great but then again we still don't know why he is still having some issues. We will get into more details about that towards the end!

Darren outlined 4 questions to ask:

1. In prayer what is the ONE THING you desire from God?

⁴ One thing I ask from the LORD,
   this only do I seek:
that I may dwell in the house of the LORD
   all the days of my life,
to gaze on the beauty of the LORD
   and to seek him in his temple.
⁵ For in the day of trouble
   he will keep me safe in his dwelling;
he will hide me in the shelter of his sacred tent
   and set me high upon a rock. Psalm 27:4-5

He went on to add that there are many things you want to see changed and for God to do but if you get ONE THING right He will bless everything. The ONE THING is keeping your eyes on Jesus.

I am going to be honest. It is so easy to get wrapped up in our own situations and problems that you forget to let God handle it. Ken and I did a lot of that in 2011. We tried to run our lives without help or guidance from God. We prayed here or there, went to church, Ken read his devotionals a couple times a week but God was not the center of our marriage or lives. Ken and I each tried to run things the way we each thought was best and that led to many arguments and hurt feelings. There were many contributing factors to both of our unhappiness last year but I feel if we had focused on God then we could have overcome them easier. Ken and I are fully committed to each other and do not believe in divorce or even using the word in arguments or in jokes. Even with those beliefs we had the "I am unhappy and if it continues on this road, I do not want to live in the same house anymore" talk. We both realized how unhappy we were--not with each other--but with our attitudes and the way we had let God slip into the side lines. It has been a long road and things are not perfect but I can see that we are getting happier and we are putting a bigger effort to lean on God and keep our eyes on Him. Keeping our eyes on Him is bringing Ken and I closer together. We are far from where we want to be and still have many things to change in our lives and our relationship with God and each other but we are aware and slowly taking small steps!

We all have problems and challenges but here is the key: Who are you looking at?

Darren talked about his premature son and the challenges that they had with him. He told a story about being worn out and frustrated that things were not getting better for his son despite doing everything they could possibly do for him. He said one particular night after leaving another doctors appointment and feeling defeated he took his son's hand and prayed over him and asked God to heal his son. He felt that God said yes that He would heal his son. Darren says over the next 7 months his son continued to get worse but he continued to pray over him every night because he believed in God's healing. After about 7 months God healed his son. He didn't say if it was overnight or several week/months but he said God was faithful and healed him!

Ken and I are taking this story to heart. We believe that God is going to heal Luke. We believe that he is going to allow Luke to start eating and drinking and not throwing it all up. We believe that we will not have to depend on his feeding tube his whole life. We believe we will have the joy one day to post pictures of him and announce that it has been taken out. We believe that Luke's liver will be healed (will explain more). We pray that he doesn't have to have a biopsy of it but we believe if that has to happen that God will use that knowledge to diagnose and heal Luke. We believe! Ken and I have started praying over Jack and Luke every night. We started a bedtime routine of reading a story from a children's bible and then leading them in their own simple prayers. We will be faithful and pray for healing until God rewards our faith and then we will be faithful in praising Him and telling Luke and Jack's amazing story!

2. In your relationship with God what is the ONE THING missing?

Darren told the story about the rich and the kingdom of God (Mark 10:17-31) and how the rich man wouldn't give up his possessions to follow God. God wants ALL of your life not just one part of it.

Ken and I are committed to turning all over to God. We are still learning how but we want God as our focus and don't want anything to hinder our relationship with God and each other.

3.In your life what is the ONE THING you need to let go?

Darren talked about people needing to let go of:

past mistakes, bitterness, pain, a sin in your life, and/or addiction plus many other things.

⁹ If we confess our sins, he is faithful and just and will forgive us our sins and purify us from all unrighteousness.1 John 1:9

God is saying "Let it go!"

4. In this year what is the ONE promise you need to stand on?

Will you believe in the promises of God? Find YOUR promise in the Bible and be confident you know that you know God will keep his promises. Keep your eyes on Jesus..............

Luke's gastrointestinal doctor, Dr. F, found at his FIRST appointment that Luke's liver enzymes and labs have never been normal. He pulled Luke's records all the way back to birth and in the NICU and saw that they have always been high. You can read more about his doctor here. We have done 3-4 more sets of labs along with extensive metabolic and genetic testing to find a cause and everything has come back normal. Good for Luke but bad for finding a reason for his levels to be high. The last labs were done in December. The doctor's nurse called us and said Dr. F wanted us to come in and talk about Luke and his liver tests. We know that he wants to do a biopsy so we can try to find out the cause of his labs being high and to make sure their hasn't been any damage yet. We did have an ultrasound that showed the liver looks normal but that isn't 100% accurate regarding damage. After talking about it (and hearing above sermon), Ken and I had decided to ask for ONE more set of labs to be drawn. I felt that is what I was being led to ask for. I wanted to get one more set of labs and before we take him in to do them I wanted to ask everyone to pray that they would be normal. Dr. F agreed and so we are asking everyone to pray! I know this is going out last minute but this weekend (and maybe next weekend since Luke has a cold) we are asking our friends and family to take Luke and pray over him. You can take him away from me and privately pray over him or you can pray over us as a family. The elders of the church are going to pray over us and anoint us. We will be at church Saturday night and on Sunday 9:15 until done.Ken and I are praying for a complete healing of his liver so he doesn't have to go through ANOTHER procedure. We are fully aware that God may say no and we will have to get a biopsy but we are believing in healing one way or another. I don't know when we are taking Luke in to get more labs because we want him to be completely healthy and no colds or sickness that could effect the results. Our plans were to take him in Monday morning but he has a cold this weekend so we will wait until he is healthier. I will update the blog a couple days before we take him in so all our prayer warriors can also pray on that day and even a specific time for him. All I can say is thank you for supporting Luke with prayer his whole life. God has blessed us and done major miracles in his life and we expect more!

Rachel

(--and Ken!)

November (Thanksgiving)

2012-01-14T13:22:00.000-06:00

November got a little cold. The boys (especially Jack) LOVE to be outside so we bundled them up and let them play a short time.

Kevin and Ken swinging the boys

Jen and the boys

Ken's cousin Jen and her husband Kevin came to visit us a couple days before Thanksgiving. The boys always love having someone new to keep them entertained (and we do too!). It was nice (warm again) weather and we played outside and even went to the zoo. Jack "called" Jen on his play phone for about 2-3 weeks after they left. Can't wait to see them again. Jen led a little prayer time over Luke for healing of this throat for eating and for his health. We are thankful for a faithful christian family who believe in the power of prayer and constantly pray for our little men!

Thanksgiving was great. Robyn and I got a little bit of girl talk in (in between the wrangling of 4 boys!)


Ever since Thanksgiving Robyen and Unkarl (Aunt Robyn and Uncle Karl) have been who Jack likes to talk about. He knows that when we go to church that we will see Pop-Pop, MiMi, Robyen, UnKarl, Ross and Eli. Robyn has become Jack's favorite person. He sees her, squeals her name, and runs too her.

Catching up...

2012-01-14T12:54:00.000-06:00

Our Family at the boys second birthday!

YUM

CUPCAKES!!

Friends--Luke, Walker, and Jack. Best picture we could get.

Jack and his Uncle Jack


Jack and sweet snuggles with Lindsey


Audri and Parker. Parker is Luke's backpack buddy.		They got feeding tubes around the same time.

CHEEESSE!

Love playing blocks with Grandpa

Jack and Grandma

Luke pushing Jack down the hall. Brothers sometimes play nice together

Thanks to everyone who came and celebrated our miracle boys birthday. We appreciate everyone and the part they play in the development in our boy's lives. Thanks for the support from our parents and the encouragement they give us during the easy and the many hard times we have had. We are very thankful for our little boys and celebrate that they are alive, active, healthy boys who lived to see their first and now second birthday. We are blessed and privileged to be able to raise these sweet and headstrong boys and can't wait to see what this year will bring for us!

What a difference a year can make......

2012-01-14T11:30:00.000-06:00

November 2010

December 2011

update of Luke........

2011-10-31T19:51:00.001-05:00

Luke wearing my sunglasses. Jack and Luke at my parents house playing.

Luke saw a new gastrointestinal doctor a couple weeks ago and we LOVED him. He took time to really get to know Luke and his background and to really listen to me. Dr. F spent over an hour and half with us. He was happy with Luke's weight and wants to decrease the amount of fat in his diet! Even though Luke's weight isn't on the growth curve, his height to weight ratio is 50% on the growth curve! He said he didn't want to make Luke a short fat kid and keep adding pounds onto him just to get his weight on the curve! Dr. F was concerned about Luke's liver labs being slightly high the last 2 times they were drawn and we talked about other concerns I had. We had a whole bunch of lab done and an abdominal ultrasound done. Ultrasound was normal and most labs were normal.....except the liver labs. They were higher than the last time they were drawn and that concerns the dr. We have an appointment on Thursday with the ENT Dr to.discuss Luke's MRI and look at Luke's swallowing so while we are there we will swing over to the lab and get more lab drawn. Dr. F is doing what we have been asking every other dr to do-- checking genetics and other disorders!-- mainly the ones that affect the liver. Some of the tests will take over 3 weeks to come back but we are glad someone is finally listening to us and also realizes that something besides just not growing is going on.

Jack and Luke are doing as good as 2yr old little boys can do!! They are generally happy with a few melt downs a day--mainly related to each another and toy stealing!! They are talking up a storm and Luke loves to sing/sream now. They amaze me how much they know and how fast they can learn new animals or words or whatever it may be. Jack loves to be read to while Luke usually won't sit still past the 2nd page! But Luke will sit in a trance in front of the tv and Jack doesn't typically sit and watch. Jack runs around while he watches the tv. Luke has really become silly and tries to make you laugh during discipline. Jack is the lover and tries to give hugs and kisses when getting into trouble. It is hard to get onto a little boy who grabs the sides of your face and presses his mouth to yours for kisses when you are discipling them. We are going to have a hard time with them trying to charm their way out of trouble!

Maybe before Christmas I will get their birthday party pictures posted!!

Thanks for patiently waiting for.our postings and continuing to follow us and pray for us. As a mom and dad of two year old twin boys we need them! Also continue to pray for Luke and for answers to be found and that whatever is found be a simple fix! I know I ask a lot but God has proven faithful so we continue to keep asking!

Thanks--R

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Luke's day at the hospital

2011-10-13T07:20:00.001-05:00

Luke spent most of the yesterday at the hospital. He was sedated and had an MRI/MRA - the MRA is a longer, detailed look at the veins and arteries. This was done to get a better look at the tight, swollen area that the ENT doctor saw when Luke was scoped. We hope to know some results this week, but may not know everything until we see the doctor on November 3rd. We hope the area is safe for him to easily go in and dialate without any problems. He was concerned during the scope that a vein or artery could be lesser against the tight area, which would require a more serious surgery to fix.

Luke woke up pretty quickly and was breathing fine on his own. Last time he was sedated it took a while for his pulse-ox level to get back to normal, so this time we brought an oxygen tank in case we needed it.

Luke also had his Medical Home Clinic appointment in the afternoon. He visits the clinic every 3 months, but they monitor his weight weekly, adjust his feeding/nutrition often, and this is the team who we call about most of Luke's issues since they see him the most and know him best.

No big changes. Now that he his feeding tube has been changed to a G/J, his throwing up is a lot better. We are leaving his calories the same, but since he has been tolerating feeds well, we will try to get more into him each day. We are also going to see a new GI doctor for a 2nd opinion. Luke still has a number of stomach issues that are not being addressed, so we will keep trying until we find someone who will listen and act on our concerns.

As Rachel promised, we will do our best to update more regularly. It has been an extremely difficult year and many things just do not get done. We will share some new pictures soon.

promise.....

2011-10-11T08:27:00.001-05:00

I promise we have lots of blogs coming. Luke has his MRI tomorrow and then a doctors appointment after that. Pray it goes well and they find something that can be easily fixed. We will update tomorrow night about how it went. Thanks for the prayers!

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And the answer is....

2011-08-16T20:08:00.000-05:00

We have no answer and more tests ordered! So here is how the day went.......

Luke and I (Rachel) checked in at the hospital at 6:30. Luke was fantastic and never got cranky. We rocked and watched cartoons as the many people came to assess him and ask me tons of questions. The ENT doctor came in to see how we were doing and answer any questions I had. Luke immediatley put his arms up for him to hold him and then blew him kisses. That is rare for Luke to warm up to someone so fast--especially someone he has only seen once before. The GI doctor came in and tickled Luke and had him giggling while she looked at him. All these things (and your prayers) calmed my nerves and left me peaceful about whatever they may or may not find. The nurse came to take Luke back to surgery and again Luke lifted his arms up for the nurse to pick him up. It was really cute because the nurse carried Luke back into surgery while Luke's monkey got pushed back on the stretcher!

ENT report:
1. Found a small cyst in his airway but since it wasn't causing issues and it was very small they left it alone. His lungs and airway looked fantastic.
2. They were looking for achalasia which is basically a muscle that stays too tight and won't let foods through. The ENT thought one of the muscles was a little tight but was vetoed by the GI doctor who was older and had more seniority. He didn't want to step on any toes but we might get a dilation of that muscle (by ENT) in the future if he still has issues with eating.
3. The doctor saw a pulsating area in the esophagus that is not normal. Luke is going to have to have an MRI to check his vascular system. The doctor thinks that there is a vein or artery pressing on the esophagus causing some of his issues. If they find something then it will be another surgery which can range from a simple laser-ing of that vein to a big cardiac surgery. We are waiting for the MRI to be scheduled and it will probably be a couple weeks before we can get it due to how busy Children's Hospital MRI stays.
4. Labs were sent to check for cystic fibrosis. He has had a negative sweat test before but the doctor wanted to get a second opinion from the genetics lab.

Here is the GI report:
1. He has several small areas of inflammation and a couple nodules in his stomach. It wasn't enough for the doctor to definitely say he has gastritis and start him on more meds but they were there so she did biopsies of a couple of those areas. She said that if they come back as gastritis then Luke will be started on some more meds on top of what he is already getting.
2. All of his intestines (the parts she could see) looked good and nothing looked abnormal. She also is sending out a bunch of labs looking for several things including celiac. We should know results on August 30th. She did mention allergy issues since he has several areas of eczema and we might need to do some adjusting of his formula since we already know he has a moderate allergy to milk (and he is on a milk based formula!).

Luke was his usual cranky post-anesthesia self and needed some medicine to make his stomach feel better after throwing up a couple times. He wasn't keeping his oxygen levels up on room air while he was asleep and was needing some oxygen. It wasn't very much oxygen and just while asleep. Luke has been off night oxygen for about 2 months but we still have all the equipment for sicknesses and just-in-cases. After MUCH convincing that we were more than comfortable with Luke's oxygen levels and needs, they let us take him home. We will do oxygen for a couple nights just to get him over this little hump and hopefully will be back to room air at night! After a good nap, Luke woke up very energetic and playful - even better than his normal self.

So how are Ken and I doing you ask? We are happy with today's results. There are many little things and still maybe a couple major things pending, but we feel that at least we are starting to make progress. We feel like we have broken through the wall we have been beating our heads again this past year. We don't have any definite answers yet but we should soon. I was so afraid Luke was going to go through all this and the doctors were going to come out and say "everything looked great" and we would have nothing to build on. There are other decisions to be made now regarding Luke and his tube feeds now that we have some ideas about what is going on but those are left for another night! Thank you so much for the prayers. I definitely felt them and Luke did amazing. We are very thankful to our family and friends that passed on our blog link in email and on Facebook because we appreciate every extra prayer we get! Thanks to Samantha for watching Jack and to Hannah and Jodie for being our "back up" babysitters if we needed extra help during the week! Thanks to my mom and dad for letting us come over and eat dinner with you so we didn't have to worry about that tonight. LOVE YOU!

We are off to bed soon as we didn't sleep much last night. We will try to do a fun blog next - sometime this week - with pictures from our vacation in South Carolina.

Tomorrow is the day......

2011-08-15T20:01:00.000-05:00

We have been waiting for this to be done for a LONG time. I am all kinds of anxious and emotions. We have been pushing for this test for over a year and it is finally here. I feel like every recent decision related to Luke and future plans have been on hold until we know something from tomorrow's test. I am afraid they won't find anything and we will be back to square one. I am afraid they will find something that can't be fixed easily. I am anxious and scared and hopeful and every type of emotion out there!

Please pray for Luke and his doctors first and then you can squeeze me in. I think I am more nervous and worried about this test than I have been for any other procedure he has had. The reason being that this is a pivotal procedure in Luke's future. If they can't find anything, then nothing can be fixed, and we are looking at long term tube feeding.

If they can find something and can fix it, then we can let Luke heal and learn to start eating and drinking and working on a goal of getting his tube out! I am really okay if Luke wants to be a long term tube feeder but every mom wants the best for their child, the easiest road, and free from pain or discomfort. He is a healthy happy child either way but it hurts my heart to see him in so much pain every day. It hurts my heart for him to cry because he wants to eat and drink what we do and what his brother does and he can't have it because it makes him throw up every time. I want to take some of that pain and frustration and difference away from him! He has an amazing story and so much more life to add to it. I want this to be part of his story how God provided an answer and healing to his life!

Please keep us in mind tomorrow. We are checking in at Children's hospital at 6:30am and his procedure is to start around 8:30. We will update as soon as we know anything and have a little time to type! Keep this little face in your prayers:

Prayer Request

2011-08-09T20:31:00.000-05:00

Hello all!
We are enjoying some time with Ken's parents right now in South Carolina.
Luke is up to 18lbs and 8oz! He is really looking good and catching up with Jack who is just over 23lbs.

Please pray for Luke on Tuesday. We saw an ENT doctor about 3 weeks ago and they did a quick look down his throat. They saw that Luke's vocal cords were very swollen, inflamed, and covered with nodules. The ENT dr said it was most likely from severe reflux and added ANOTHER medication to take at night. The ENT dr also wanted to do a better look at Luke so he is scheduled for "surgery" on Tuesday (8/16) to look at the full length of his esophagus. As bad as this may sound we are praying that they find something! The dr has an idea of what might be causing Luke's problems with swallowing and all his vomiting and we are hoping that the doctor is right. If the condition is found then it is a surgery to fix it and then Luke should be able to start eating and drinking without problems. It has been hard on me to pray for something to be wrong with your child but we want answers and we want something that can be pretty easily fixed.

The Gastrointestinal doctor is also going to look at Luke on Tuesday so he will be getting a full work over! Please pray that Luke does well with the sedation, they find the condition they are looking for, and they can do the surgery to fix it on Tuesday too. Pray that he heals fast and is able to start eating and drinking and we can get the feeding tube out ASAP!! We will update Wed or Thursday next week and give more details about the procedure, his condition, and pictures from our trip. Thank you so much for the prayers!!

New Videos Of The Boys

2011-06-21T18:35:00.002-05:00

Only have time for a quick update, but wanted to share some videos. They are from last month, but will give a look at how much they've changed (especially for those who don't see them often). Here they are:

Jack asking for a banana

The boys playing

The boys playing on the floor

Boys pushing their toys around

Luke playing on the train

Luke playing with his backpack on

June

2011-06-20T19:08:00.005-05:00

I think a monthly update is how it is going to go right now! Luke is doing great. He is getting all his feeds through his feeding tube. He wears his backpack all day and it hasn't slowed him down. He is still getting feeds at night too. The last week he has been interested is a sippy cup again and 3 days took all his day feeds by mouth. We also have taken him off his night time oxygen and he has done great. This week he didn't gain as much weight as he has been so we are going to go back to all tube feeds and just let him drink a sippy as bonus formula. If his weight gain continues to slow down then we will put him back on oxygen at night. He is talking more and is walking a little bit. If he has a point to go to he will walk there but he still won't just take off and walk. Luke does things in his own times so I am sure one day soon he will take off and never slow down! Jack is picking up more and more words everyday. Just today Jack brought us a book and let us read the whole book to him--twice! My boys are getting so big and are not babies anymore. It makes me sad but I love seeing them learn new things.

Here is a picture of them last summer:

On April 29th we blogged that Luke was a steady 14lbs for the past couple months. He is now 17lbs and 3oz!! Here is a picture from our cruise in March and one I took today. He is getting chubby cheeks and thick legs!

Lily giving Luke kisses!

Sunscreen hair Jack:

Brothers kissing. I have worked hard to get them to love each other instead of fighting. Sometimes it works!

New Doctors For Luke

2011-05-10T20:19:00.002-05:00

No new pictures, but wanted to give an update on Luke. We knew twins would be challenging, especially once the boys were born and we realized that the "normal/great" experience of a first baby would be nothing like we had hoped for. I knew that leaving my job to stay home with the boys and care for all their special medical needs would not be easy, but never imagined how demanding, stressful and exhausting this past year has been. I still love being home with them and am thankful for the opportunity. Had I known what challenges we would face this past year, I'm sure it would have scared me away from quitting my job and dedicating all of my time to Jack and Luke.

Sorry for the lack of updates. Extreme busyness is no excuse - I know that everyone is busy - but it's just a way of life here now... I hate dark and rainy days as well as the extreme heat. I let too many things get to me and constantly struggle with focusing only on what really matters and not wasting my time and frustration on things that don't. This spring Luke's specialty clinic at the hospital started a support group for families of kids with special needs and chronic medical conditions. It has been great to share frustrations and get tips from others in similar situations. As hard as we have it, most families' medical struggles are far worse than ours, and it reminds us how much we have to be thankful for. It's good to be reminded that as loving and helpful as family and friends are, no one else really "gets it" and understands our challenges unless they are living and dealing with medically needy kids every day.

Last week the group was small and most of the time was spent talking about Luke and his feeding issues. His intake is never consistent month to month or even week to week. Occasionally he will take a small amount of food with texture and have no problems, but the next day he gags and throws up as soon as anything enters his mouth...
He has had his feeding tube for over three months and is gaining the exact weight that he was before the tube was placed. Normal gain is 10 grams per day. He has always averaged and is still only doing 5 grams per day. The doctor's goal is to reach 10-20 grams per day to help catch up, but so far his body is taking everything it can without any increased weight gain.
Luke has stopped drinking bottles and will occasionally drink slowly from sippy cups, but the only time we can feed him consistently is overnight and during nap time. We hate overfilling him and making him throw up, but finding the right balance has been very difficult.

The leader of our support group referred us to a developmental clinic at the hospital that assesses medical and psychological conditions to treat extreme feeding dysfunctions. This morning we had our first appointment and LOVE the doctor. She wanted to hear the entire story of Luke's life - before and after birth. She asked lots of questions, took very detailed notes and is the first doctor that has really connected with and taken a true interest in him. For over a year, we have asked for tests and referrals, trying to do anything we can to get some answers and find out what Luke needs. We now have someone who will fight for us and not stop until we get answers and start to make some progress. She called a pediatric GI doctor while we were there, explained that Luke could not wait any longer and needed to be seen immediately, and was able to get us in this afternoon.

Luke is starting two new medicines. The first is an antihistamine that surprisingly should increase his appetite. The second is reglan, which will help his stomach to empty faster. We are aware of reglan's side effects and have tried it before - Luke did not tolerate it and we stopped after about one week. This time the dosage is about one-fourth of what he was getting before and hopefully it will be enough to help without causing the irritability and twitching.

For feeding, we were told that we MUST make sure he gets at least 20 ounces per day (our high-calorie formula/calorie-boosting powder/microlipid mixture that we are currently using). He usually gets around 16 ounces since the only guaranteed feeding time is overnight and naptime. He is just too busy during the day - never still and constantly trying to climb on things - but we have a solution. His feeding pump is very small and came with a special-sized backpack that holds the pump and IV bag. The problem is even though the backpack is small, it is still almost as tall as he is. There is a "super-mini" backpack that we have ordered and should have within the next two weeks. That will allow him to wear his pump and receive feeds while he is awake and active. Many kids with feeding tubes wear their backpacks and have continuous feeds throughout the day - it becomes a part of them and helps them gain the weight they need. We are still a month or two away from that, but at least it will make it easier for us to eventually get enough into him.

OK - way too long and the boys have already been asleep for over three hours. If I don't quit and get to sleep now, it will be a really rough day tomorrow. Thanks for all of the continued thoughts and prayers. We will do our best to keep you updated on a more regular basis.

I know, I know.......

2011-04-29T19:58:00.005-05:00

Long time but we have been busy. Jack is running around and Luke is very close to walking too. We can't really take our eyes off of them since Luke is a monkey and climbs with lightning speed and Jack is right behind him! Here are a couple pictures from our cruise in March:

Jack started walking on this vacation. He saw his cousins running around and decided to follow them. He hasn't stopped since! Playing at the beach with the cousins:

Luke getting a breathing treatment. Both boys had a cold and needed lots of TLC!

We went on a cruise for my parents' 30th wedding anniversary. It was us, my parents, and both my brothers families. We had a great time.

So a quick update on the boys:

Luke: He is weighing in at a steady 14lbs. We are still having issues getting him to grow and changing his formulas and additives around. We are getting close to having to do daytime feeds through his feeding tube. Right now we are only doing nighttime feeds. Luke has 7 teeth--5 of them in the last month! He is starting to pick up more words and jabber more. He is getting close to walking. He will hold one finger and walk all around. He still won't eat anything that isn't baby food consistency BUT he does like to chew on pickles. He loves Sesame Street and will sit super still for long periods of time--which is a miracle with him! He likes to climb and is fast and agile like a monkey! One second he in playing on the floor and next thing we know he is in his toy bin standing on the edge of it trying to get to the TV. He still loves to cuddle, wrap his fingers in my hair, and give kisses out without having to be asked.

Jack: He is about 21lbs. He will eat everything put in front of him. He signs and talks all the time. His 2 favorite words right now are "outside" and "bath". He is walking around and likes to be chased. Jack has 8-9 teeth and one BIG molar. His second molar is working its way through. Jack likes Sesame Street too especially Elmo. Jack doesn't climb as much at Luke but gets mad when Luke goes places that Jack can't get into. Jack is starting to be more of a cuddler especially when he is tired. Jack isn't as free with his kisses and usually only gives them away if he is asked--and if he feels like it.

They are so much fun and I love seeing them grow and learn new things everyday. I pray that we are raising them in a Godly home and will raise them to be strong men of faith!

Playing in the snow

2011-02-10T13:08:00.004-06:00

The boys have kept us very busy these last two months. This is the first week since the beginning of December that all four of us have been healthy and feeling well. Luke is doing well with his feeding tube. Less than a week after we started his night feeds, he was sick for a whole week and would not eat or keep anything down. Now we've started things back and he's adjusting to eating during the day and getting his extra two-bottles-worth of formula overnight while he sleeps.

My parents are here visiting for the week and were looking forward to sunny days and the chance to take the boys outside. Instead, they have seen the most snow that I've seen since coming to Arkansas eight years ago. We had six inches of snow in the Little Rock area yesterday, but once it stopped, we bundled up the boys and headed outside.

Rachel has to work yesterday, today and tomorrow. Instead of trying to come home and make it back each day, she stayed at a hotel a few exits down the interstate from the hospital. Today the sun is out and should start to melt what's on the roads before refreezing tonight. Here are some pictures and videos from the last few days.

The boys love standing up and looking out the back door

Jack is getting tall and reaching for anything he can

They love playing with their train

At the back door watching Lily in the snow

No sled, but a laundry basket fit them perfectly

Riding through the street

Luke on his snowy slide

Jack doesn't like being down in the snow

Video of Jack and Luke riding in the snow

Video of eating with Grandma

Luke is doing well

2011-01-22T21:34:00.001-06:00

We brought Luke home at the end of the day Friday and he had a pretty good night. A little extra cranky and pretty sore, but Tylenol every 4-6 hours has helped a lot. He is happy to be back home and is playing and smiling just as much as he normally does. This morning the boys slept in until 9am and hopefully they will sleep good again tonight.

Successful Surgery

2011-01-20T19:08:00.002-06:00

Today was Luke's big day. He was unable to eat anything after midnight, so I woke up and gave him one last bottle at 11:50 last night. We arrived at the hospital a little before 7am and checked in to prepare for his surgery. He was very hungry and grumpy, but did better than I expected. His surgery didn't begin until around 11am, but it went quickly and without any problems. He had a laparoscopic gastrostomy tube (feeding tube/g-tube/button) placement. I won't post a picture because right now it looks pretty bad...

Tomorrow morning Luke can start eating again (bottles by mouth), we will be trained on how to use and care for the feeding tube, and they will do some test feedings using the tube. If all goes well, we should be back home sometime tomorrow. Now we will be able to give Luke some extra formula during the night to increase his calorie intake and weight gain.

Luke before surgery - very hungry and chewing on anything he could find

Resting in his hospital room before bedtime

Schedule update

2011-01-19T14:13:00.001-06:00

Just got an update on Luke's surgery tomorrow. They now plan to start around 10:30am instead of noon.

Surgery for Luke tomorrow

2011-01-19T13:51:00.001-06:00

Luke is getting his feeding tube tomorrow. I just called to get the details for the surgery. They want us there at 7am, but the surgery isn't scheduled until around noon. Lots of wasted time if you ask me...

Since he is on thickened feeds and can't do any clear liquids without problems, he can't eat anything after 2am tomorrow. We will have one HUNGRY and MAD little boy in the morning. At least I'm used to all the screaming and can tune it out pretty well. For everyone else in the waiting room tomorrow morning - too bad...

Luke's surgery is scheduled

2011-01-17T19:43:00.001-06:00

Luke will have surgery sometime Thursday at Arkansas Children's Hospital to get his feeding tube. We won't know the exact time until we call Wednesday afternoon and get all the instructions. He should have to stay one night and hopefully will be home on Friday.

Luke is feeling much better

2011-01-16T18:06:00.000-06:00

We were discharged from the hospital late Friday afternoon and were so glad that it was not a long stay. It was nice to know exactly what he needed and that sped things up and kept him from having to stay so long like he did in October.

We will continue to do updraft breathing treatments at home and have some other stronger medicine at home now for when he gets sick next time. It's too early for the doctors to call it asthma, but his "reactive airway disease" and "chronic lung disease" mean that he has bad asthma which we can only hope he eventually outgrows.

He should be having his surgery for the feeding tube very quickly - the surgery clinic should call us tomorrow and he could have it done this week. It's fast, but at least it will be done quickly and he can start to really gain weight. We'll update when we have it scheduled.

Luke is in the hospital again

2011-01-13T19:33:00.001-06:00

Jack just gets no love. He is doing great, growing well, eating more and more, and is learning a few new words and sounds. He will put his left hand to his mouth - sign language for "eat" - but that's all he knows right now. It helps to keep him from screaming all the time, but that's all he does all day (because it seems like he is hungry all the time).

Luke had his appointment yesterday with the Medical Home clinic at the hospital. Even though he was sick for about a week around Christmas, he did gain some weight. He is gaining about 7 grams a day, which is better than the 5-grams/day that he had been averaging. This puts him in the range of normal weight gain for babies his age. It's still not enough, though - he needs 10-12 grams/day to do any catch-up.

It's not something we want to do, but we are ready for Luke to get a feeding tube. His speech development has dropped off compared to Jack (not saying or learning as many words) and continued delays can turn into big problems if he is not saying sentences and ready to start reading by school time... We have to have a consult with the surgeon and an upper-GI exam to check his esophagus and stomach, but normally the surgery will happen in 4-6 weeks.

Luke decided he misses the hospital too much - he had a very bad night and this morning we took him to the emergency room. When he really gets sick, he goes downhill fast. Last night at dinnertime he began wheezing and coughing a lot. At bedtime he had a breathing treatment, but needed two more to get through the night. By the morning he could not eat and was really having trouble breathing - our treatments and suction machine were still not enough to help.

He was admitted this morning and Rachel just left to go home and get some sleep. Luke is doing much better after the hospital's deep suction and much stronger breathing treatments. The symptoms are the same as his last hospitalization in October, but since we caught it fast and know exactly what he needs, we hope to only be here another day or two.

Tomorrow is Christmas! It's practically here!

2010-12-24T11:01:00.005-06:00

The Grinch made a visit to our house this week. It started on Sunday when Rachel woke up with a bad cold. Monday Luke got the stomach bug and spent the next two days throwing up everywhere on everything. Jack was only bad on Tuesday, and I had it all day on Wednesday. Laundry has been going constantly (I'll spare all the details) and it's been a very hard week. It takes all I have to keep up with the boys during normal times when they're healthy - things are so much worse when they're sick...

The good news is we're all almost better. The boys have been extra tired, extra cranky and extra cuddly all week, but they're eating better now and starting to get back to normal. Jack just woke up, so my time is running out. Here are some pictures and videos:

Jack playing with Luke's oxygen tubing

Luke getting into the Christmas spirit

Jack just wanted to get it off his head...

But soon he forgot about it and was off to start some trouble

He pulls up on Luke's oxygen machine and will turn the knobs and adjust the settings

On Wednesday, both boys were so tired they fell asleep while playing

And now two videos:

Jack trying to lick the Christmas tree

Jack wants presents

Our Christmas Gift To You

2010-12-23T17:31:00.002-06:00

Personalize funny videos and birthday eCards at JibJab!

Getting ready for Christmas

2010-12-18T20:20:00.003-06:00

It is great to be excited about Christmas again. Last year we pretty much skipped Christmas - it was not a happy time. Jack had been home just over a month, but Luke was still in the hospital. Flu season was in full swing, the hospital had extra precautions because of swine flu, and Jack was not allowed to see Luke in the hospital. We took him up anyway and had a plan to quickly get them together, but it did not work. All we wanted was one family picture of our first Christmas. The boys didn't have to touch or be close at all - we just wanted one picture with the four of us... We didn't do much celebrating last year and didn't decorate at all - no tree, no lights, nothing.

This Christmas season has been so much better. The boys are into everything, crawling and climbing everywhere and screaming a lot, but at least they are both home and we can celebrate our first Christmas together as a family. We have been listening to some Christmas music and watching a lot of the Grinch and Christmas Carol movies (Muppets Christmas Carol, Flinstones Christmas Carol and Mickey's Christmas Carol). Our Christmas tree is surrounded by a metal baby gate to keep boys and dog from attacking the tree or snooping around the presents.

Jack checking out the presents under the tree

Trying to figure out how to get in there

Jack is getting more teeth and is very grumpy most afternoons. He rarely stays still or wants to cuddle, but sometimes he will now

Two crazy boys playing around after their baths today

Here are a few videos:

Luke dancing while listening to Taylor Swift. We were watching the live music from the 2010 NFL Kickoff season-opening game in New Orleans, and the boys liked it!

Jack and Lily playing on the floor

Luke playing with Lily's toy

Jack and Luke playing with Lily. Luke is not very excited and just wants to chew on his oxygen tubing...

Update on Luke and the past month

2010-12-09T14:06:00.002-06:00

It's been a very busy, long and tiring past few weeks and almost a month since the last update. Community Connections' A Royal Night Out was a huge success - the second annual event almost doubled in size and doubled the money raised! The day after that, we flew to Charlotte to spend the week of Thanksgiving with family in South Carolina. The boys traveled well and we had a great time - it just took them a few days to get back into their normal routine once we were back home.

Last week Jack and Luke had the second half of their one-year shots. Luke did well and only cried until the shots were done. Jack's leg must have been asleep, because all he did was stare at the nurse with a serious face - no crying, not even a frown... In the past two weeks, Luke has had three appointments at the hospital. The first was at the audiology clinic to retest his hearing. He failed one test before coming home in January (not uncommon for babies on a lot of oxygen like he was) and this appointment has been set since the spring. Luke did fine and they just want to see him in another year to check one more time.

Tuesday Luke went to the pulmonary clinic for a 1-month followup. After his hospitalization in October, Luke was on oxygen all day and night. Last month the pulmonary clinic had us discontinue daytime oxygen and only use it at night. Luke has continued to grow slowly but steadily until now. He lost weight this past month - dropped from 5.8kg to 5.6kg. Luke is now back on oxygen all the time and we expect it to continue at least through the winter.

Since February, Luke has had monthly visits to the high-risk newborn clinic at the hospital. They have kept a close watch on his growth and development, but the doctors have been very conservative and at times slow to act when we have brought up concerns. During Luke's hospitalization in October, the pulmonary team let us know about the Medical Home Clinic at the hospital. It is a place for kids with chronic medical conditions that need the services of multiple clinics at the hospital (Luke has seen newborn, eye, audiology, radiology, and pulmonary clinics and has had two hospitalizations since being home). They will help coordinate multiple appointments by making sure they are scheduled the same day. It should be a big help and will let us squeeze things into one day instead of making three visits like we have these last two weeks.

Yesterday was Luke's first visit to the medical home clinic. Rachel was working but was able to leave her unit and be with us for most of the visit. The doctor and nurse were great and will be very proactive with his care plan. While we are excited about the change, it was not a good day. We have known since the spring that if Luke does not gain enough weight consistently, the last resort is a feeding tube.

All year long, the newborn clinic has tweaked his "recipe" and increased the calories of his formula each month. They were concerned about his slow growth curve, but his growth has been proportionate (weight, length and head circumference) - that is no longer the case. If babies are not getting enough calories, slower head growth is the first sign, followed by slowed development. Yesterday's measurements showed that Luke's head growth is no longer following his length and weight.

Luke is eating all that he can/will right now, but the doctor thinks it is only about 60-70% of the calories he needs. Babies need to gain about 20 grams per day for normal growth and Luke's best average has only been around 7 grams. The doctor is giving him one more chance until the next appointment - we are adding more calories to his formula and Luke is also starting Reglan. We do not have a date for his next visit, but it should be in 4-6 weeks.

A Royal Night Out

2010-11-13T12:52:00.002-06:00

It has been a VERY busy week and the craziness will continue until Friday is over. The job I have started helping Community Connections has its busiest time of the year in November. Friday night is A Royal Night Out, our biggest event of the year. I have been contacting media this last month, making sure that information about the event is sent to newspapers, magazines, radio & TV stations, websites and local events calendars throughout central Arkansas. Now I'm working on the printed materials needed for the event and next will be the pictures and music needed for the evening. Anyone local is encouraged to come out and support kids with special needs!

Boys photo shoot

2010-11-08T14:29:00.003-06:00

Luke had an appointment last week at the hospital to see the pulmonary clinic. He continues to gain weight and the doctor was pleased with his growth curve. For the last few months, Luke's growth has plateaued and the newborn clinic (which Luke would visit every month) was really out of ideas - his formula is 35 calories per ounce and we are feeding him everything he will take. Now, Luke's curve is back and the pulmonary doctor feels he is doing well enough to discontinue oxygen during the day! He is still acting much happier and seems more energetic. We will just use the oxygen at night and Luke will go back in a month.

Saturday we took the boys to have pictures taken. They slept on the way and were still a little sleepy, but they did well! To view all of the pictures click here. Here are a few:

Back home

2010-11-04T22:36:00.001-05:00

Had a great trip and just got home. I knew Rachel and Mom had projects they were working on while I was away, and here is what I found on the dining room wall leading into the living room:

More pictures from my trip

2010-11-03T22:53:00.001-05:00

Great day having fun and getting to know some other Arkansans better. They will be serving for the next year at Our House, a "working" homeless shelter in Little Rock. Don't know much about what they do, but we may be able to help each other out in the coming year.
Here are some pictures from today:

Sandia Mountains in the distance

We took the bus tonight to head out and see what we could find

The scenery and surroundings reminded us a lot of the movie Cars

Passed these on our walk to dinner

We skipped the hotel dinner again - had to find some real authentic New Mexican food before heading home

Dinner was great! My enchiladas were topped with VERY spicy red chili sauce, but everything was very good. Half a day to wrap things up, then we will head to the airport and be home tomorrow night!

Update from New Mexico

2010-11-02T23:31:00.001-05:00

The boys are doing well. Luke goes to the pulmonary clinic at the hospital tomorrow for a follow-up from his 9-day hospital stay. The boys are also going to the doctor in the afternoon for the first half of their one-year shots.

My mom flew in for the week to help Rachel with the boys while I am gone. All I know is that there are some super-secret projects going on at home and I am in for a surprise when I get back Thursday night...

I am in Albuquerque, NM for some orientation/training for my job this next year. The job is helping provide free extracurricular actiities for special-needs kids through Community Connections of Arkansas. Technically the job is a one-year volunteer position through the federal government's Americorp VISTA (Volunteers In Service To America) program. Over 150 volunteers from the southwest region of the country have gathered for a pre-service orientation.

I am working with three great women - Jodie McGinley, Kelly Coffman and Jamie Tyler. We are having a good time, but miss our families and are ready to be back home. It really is nice to lose my responsibilities with the boys for a few days, but it would be much more fun if Rachel were here.

One block from our hotel is "Uptown Albuquerque" with a great view of the Sandia mountains

We passed a patch of cactus along the sidewalk on our walk to Starbucks

We found a cool custom cookie shop that had all kinds of interesting creations

New Mexico is known for their annual hot air balloon festival - there is lots of balloon stuff around

Tonight we decided to skip dinner at the hotel and headed to a Japanese steakhouse

Jodie, Kelly and Jamie

Stopped in the Apple store to check out the new iPods and MacBook Airs

Jack's day

2010-10-27T20:32:00.002-05:00

Jack did extremely well today. He was VERY cranky before the surgery because he was hungry and tired. Jack and I had to be at the hospital at 6:30 for an 8:30 surgery. He was good for the first hour but he cried off and on for the second hour. His normal schedule is to eat around 5:30/6:30 and then go back to sleep until around 8 so he didn't get to eat and he refused to close his eyes. The nurses took him to the OR around 8:15, they started surgery around 8:45 and I was back in recovery with him at 9:20. He was MAD when he woke up but promptly took 7 ounces of formula and was a happy boy. The anesthesiologist did a caudal block on him which is supposed to keep him numb for about 6 hours. It helps keep the need for narcotic pain meds low and usually Tylenol and Motrin controls their pain. Jack rested for about 45 more minutes and we were able to come home! Jack and I came home and took a 2 hour nap together and he has been a happy boy all day. He has been a little extra cuddly but that is fine with us. He has been standing and crawling with out any problems. Luke had a plastibell circumcision but they had to do a regular with Jack. It is a little more painful than the plasibell and it is more swollen and red. Hopefully Jack will be in the same good mood tomorrow and just need some Tylenol and Motrin. Thanks for the prayers. Will post a picture or two of Jack from my iphone in the next post.----R

Another (scheduled) day at the hospital

2010-10-26T13:38:00.002-05:00

Arkansas Children's Hospital really is our second home. It's a good thing Rachel works there and we are both very familiar and comfortable with the place. Tomorrow morning Jack will have a quick visit with Dr. Jackson before he is put to sleep and gets circumcised. Keep Jack in your prayers tomorrow - the surgery is scheduled for 8:30am. We hope he does as well as Luke did (happy and back to his normal self the same afternoon).

Luke is still doing great at home. He's very happy, eating just as good or better than before, and seems a little more energetic. Maybe he has needed some extra oxygen for a while and we just didn't know it... He will have fun tomorrow morning when he has the house to himself and no competition for whatever he wants to play with.

We will post updates and let you know how Jack does tomorrow.

Great being back home

2010-10-23T09:01:00.003-05:00

It's great to be back home with Luke. He and Jack are happy to be back together. I think both boys have been worn out this past week - both napped very well yesterday and they are sleeping in this morning. Luke is doing well with his oxygen and seems a little more energetic than usual. He may have needed the extra oxygen for a while, and because of that we are switching to another clinic at Children's Hospital that Luke will see monthly. Now that he is a year old, he has outgrown the high-risk newborn clinic and the new clinic works closely with other departments (pulmonary, cardiology) and can keep a closer watch on his development.

Luke has a pulmonary appointment the first week in November and will stay on oxygen at least until then. It doesn't seem to bother him while he plays and crawls around all day. He enjoys grabbing the tubing and chewing on it, and Jack will play with it sometimes too. It will be a long weekend of trying to clean and get caught up with everything - being at the hospital unexpectedly for nine days leaves a lot to be done...

Out the door!!

2010-10-21T17:52:00.001-05:00

Luke is on the way home! Ken is glad to be going home and to be able to sleep in his own bed. I am glad my whole family is under the same roof again. I will sleep better tonight.

- Posted using BlogPress from my iPhone

Hoping to be home tomorrow

2010-10-21T12:52:00.001-05:00

Luke is still doing well. It's been a busy morning and here is the latest:

His oxygen is down to 1.5 liters and will continue weaning, trying for one-half liter by tomorrow.

Feedings are still going well. The pulmonary team is fine with using oxygen at home for just a few weeks until Luke is fully back to normal.

We should also be getting an updraft machine and will keep that and the oxygen at home throughout the winter. That way, if he starts getting sick again, we are prepared to treat him quickly at home (and hopefully avoid another long hospital stay like this).

I've talked to nutrition about his feeding plan and this afternoon we are receiving the oxygen equipment and being trained (it's different than what we had at home before).

Luke is playing a lot - really getting tired of the hospital and ready to be home with Jack.

Moving on up....

2010-10-20T18:59:00.000-05:00

Good busy day. Luke got his feeding tube out today and has been eating good all day. We stayed on 2 liters of oxygen because the doctors did not want the nurses to go down on it until cardiology made their recommendations. Luke got transfered to 5E bed 5!! If Luke behaves then he may come home on Friday or Saturday. The cardiology team recommended that Luke goes home on oxygen for a couple weeks and then we can wean him off. We will then go back for a follow up and get another EKG/ echocardiogram. They also want Luke to be on semi-isolation for his protection. They call it protective isolation. It means no going places that he could catch something from someone else. It is going to be another long winter of not going many places! I am going back to work tomorrow and working until Saturday. We will update when we have some more news. Thanks for all the prayers and everyone who has brought us dinner! It makes life a lot easier.

- Posted using BlogPress from my iPhone

Pictures of Luke eating

2010-10-20T11:35:00.001-05:00

Luke just ate well! His feeding tube is out and he did great job with the bottle. Here is the proof:

Things are looking better

2010-10-20T08:28:00.001-05:00

Yesterday was a good day for Luke. His nasal cannula (oxygen tubing) was changed from the high-flow bigger size to a normal-sized, smaller one. His oxygen is staying at 2 liters and he was able to drink a bottle yesterday.

Still waiting to see the residents and doctors, but we expect to move out of the intermediate care unit sometime today. Luke should lose his IV and feeding tube today an continue bottle feeding.

I won't post much more because a lot may change after talking to the doctors, but it looks like Luke should be home by the end of the week. The pulmonary team is thinking that his pulmonary hypertension (which he had after birth before coming home) has been back for some time and his lungs have been overworked for a while. We will most likely have oxygen at home again for a few months. Still lots of questions and we hope to get some answers today.

New team

2010-10-19T14:12:00.002-05:00

The pulmonary team has officially taken Luke as their patient. He previously was on a general pediatric team. They still want him on 100% oxygen but we can wean his flow down. His nurse today just changed him to a regular nasal cannula an he is on 1 1/2 liters of oxygen!! When I came in today he was just playing away so I know he is feeling better. His pneumothorax is about the same today so we will still wait and see if anything else needs to be done. The echo-cardiogram has already been done and we are waiting to hear the results of that. The test for the cystic fibrosis will be in a couple days as he has to be off some of his medicines before they can do it. My dad (Dennis) was here when the attending came in and asked him about the CF test. The attending said that we shouldn't worry because he likes to test ALL children that are one and under that have come in with severe resp distress. So it is more of a rule out than a suspicion. It eases my mind a little but it still worries me. They may transfer Luke to a regular floor today or tomorrow which would be a step in the right direction! Keep praying as we know from many experiences that prayer works!--------R

- Posted using BlogPress from my iPhone

Quick update on Luke

2010-10-19T13:03:00.002-05:00

I am home for a couple of hours and Rachel is with Luke for the afternoon. Here's a quick update as of two hours ago - I'll post more tonight or in the morning. Yesterday the pulmonary team made some changes to Luke's oxygen. They increased the percentage up to 100% (from around 30%), but started to decrease the amount of flow. We started yesterday at 8 liters and now we are down to 2.5 liters. Keeping the percentage high should help with the collapsed area in his lungs, but once he gets below 2 liters and can tolerate it, we hope to start feeding him bottles.

When I left, his chest x-ray from this morning had not been seen by the doctor yet. They will compare it to yesterdays' and see how the collapsed area is doing. We may be moving back up to the 5th floor this evening - the doctors mentioned it this morning, but I was not ready just yet. His condition right now is stable enough that unless something develops this afternoon, I'm comfortable with moving him.

This morning Luke had an echo-cardiogram, but no results yet from that or yesterday's EKG. The "salt test" (for cystic fibrosis) will not be done today. We're told there is a strict criteria that must be met for the test to be accurate (oxygen levels, medications, etc.) and he may not be ready for it until just before discharge.

I'll try to get a little rest before heading back to see Luke and relieve Rachel for the night. I'm picking Jack up and will take him to the hospital with me for a quick visit. Thanks so much for the continued prayers, emails and notes of encouragement.

Tests and more tests for Luke

2010-10-19T05:16:00.001-05:00

Luke has been stable since his increase in oxygen yesterday morning. He pulled out his feeding tube in the morning and got a new one. They do x-rays to confirm that the tube is placed correctly, and this x-ray showed a small area of pneumothorax (collapsed lung). We were told it is hard to see, so it could have been there since Luke has been here or it could have developed from the high-flow oxygen he has been receiving. That may explain why he has had a hard time weaning off his oxygen.

We had a visit from the pulmonary team and they asked lots of questions, trying to rule things out and determine the best course of action. Luke had an EKG yesterday and today will have an echocardiogram and be tested for cystic fibrosis. I've heard of CF before, but spent the night learning more about it - terrified if that's what Luke has, but can't wait to have the test done and get the result.

Luke is off isolation!

2010-10-18T12:30:00.001-05:00

Since Luke was admitted Wednesday morning, he has been on isolation. Since he came in with respiratory distress, drainage and chest congestion, the doctors, nurses and respiratory team have been wearing gowns, masks and gloves anytime they enter the room. The last of the cultures came back negative on Saturday, but the weekend doctors like to just maintain things and not make many changes.

We were told that Infectious Control will usually leave a patient on isolation until all symptoms are clear. This morning our unit leader called to request that Luke be cleared, and we were just told that he is offically off isolation!

Luke seems to really like the hospital and not care about going home anytime soon. Since early this morning, his oxygen has been increased from 5 to 8 liters. He was just not getting enough oxygen when sleeping. They are starting to wean him down again today and right now we are at 7 liters.

He will have an ENT bedside consult to rule out any physical airway abnormalities. Our hope is that ENT will say he is normal, his oxygen can be weaned quickly, and that he will make it through the night without any setbacks.

Rachel is going back to work either Wednesday-Friday or Thursday-Saturday. We have arrangements for Jack the rest of the week and Rachel's dad is having rotator cuff surgery on Friday. It will be a long and busy rest of the week - hoping that we can get enough rest and stay healthy ourselves.

Luke needs prayers

2010-10-18T04:04:00.001-05:00

Luke had a good day yesterday. He seemed to be feeling much better, did not want to nap much, and played with his toys for part of the afternoon. His breathing treatments are down to every six hours now, and before bed his oxygen was weaned from 6 liters down to 5.

He is still getting a slow, continuous feed through his tube - his oxygen needs to be down to 2 liters before he can begin trying bottle feeding.

Luke does not like 3am. The first night after he was admitted (Wednesday night/Thursday morning), he was working so hard to breathe and really looked bad. The respiratory therapist called the ICU doctor and resident on call to look at him and Luke was one step away from moving to intensive care and getting a breathing tube.

Luke finished a breathing treatment about an hour ago, but now is oxygen level is down to 92-94%. Normal is close to 100% and right now his orders are to be 94 or above. His oxygen has been increased from 5 liters to 6, but it has been an hour and his numbers are not getting any better.

We really need your prayers now. It's been exhausting and stressful enough already, and any setbacks just further delay bottle feeding and decrease his chances of being home in the next couple of days.

Sunday morning update

2010-10-17T07:27:00.004-05:00

I spent the night in my own bed last night! Rachel wanted to give me the night off, so I'll be with Luke most of the day (and hopefully get him to watch some football). Rachel said his oxygen is down to 5 liters, so maybe by tomorrow he will be low enough to try bottles. His feeding tube had to be replaced last night, but as far as I know he hasn't had any problems with the new one.

Here are some more pictures of Jack's fun the last two days:

Ryleigh playing with Jack

Ryleigh and Rowan both wanted to feed Jack, so he had lots of food to choose from

Two more of Jack and Walker:

Jack is having fun

2010-10-16T13:17:00.001-05:00

Thanks to everyone who has been helping watch Jack this week. Wednesday and Thursday he spent the day with Mimi and Pop Pop. Yesterday Samantha Ray had him for the day and her girls Ryleigh and Rowan had a great time playing with him (sorry - no pictures because the hospital blocks Facebook).

Today Jodie McGinley has Jack and he is having a great time with Walker. Here are some pictures she sent us:

Lindsey Deaton stopped by with lunch for us and gifts for Luke. Thanks so much!

Another good night for Luke

2010-10-16T07:07:00.002-05:00

Luke had a good night - I slept pretty good, so he didn't get very loud or too upset. The doctors and everyone else following him have just made their rounds and are pleased with how he is looking and sounding. Yesterday Luke started getting some continuous Pediasure through his feeding tube and today he will do the same but mixed with a few more calories.

His oxygen is at 8 liters and 40% - the weaning is going very slowly. No one's thinking about discharge anytime soon - today we are just continuing along and praying the positive progress continues.

Visitors welcome

2010-10-15T11:16:00.000-05:00

Forgot to mention that we would love visitors. Luke should be here at least through the weekend, and familiar faces are definitely welcome!

We are at Childrens Hospital and visiting hours are 9am-9pm. We are on the 3rd floor, just up the red elevators at the front of the hospital. Luke is in Unit 3C room 4.

Luke's feeding tube

2010-10-15T10:12:00.001-05:00

Better night for Luke

2010-10-15T09:58:00.002-05:00

Luke had a better night last night. He was able to sleep a lot better and stretched his breathing treatments out to 3-4 hours instead of every 2 hours. He is still on a lot of oxygen (12 liters at 40%), but they will try to wean him lower today.

The doctor was happy with how Luke is acting this morning, but his oxygen needs to be much lower before he can start eating. Rachel is concerned because he has lost a pound these past two days - it took a LONG time to gain that pound. Luke was given a TPT feeding tube and they may try some small feeds today just to get something into his stomach.

Looks like it may still be a few days before going home, but he is definitely going in the right direction. Thanks for your continued prayers and for the family and friends that have been taking care of Jack while Rachel and I split our time at the hospital and sleeping at home.

Luke is feeling a little better....

2010-10-14T19:02:00.001-05:00

- Posted using BlogPress from my iPhone

Update on Luke

2010-10-14T18:07:00.001-05:00

I went home this morning to get some sleep. Rachel has been with Luke all day, so I'll have her post a quick update -

Luke was having a rough morning so the doctors increased his oxygen to 12 liters. He had another breathing treatment and then FINALLY started getting some good rest. His breathing has gotten better slowly as the day has gone on. He is still on 12 liters of oxygen and they probably won't mess with that until tomorrow. He slept the majority of the day and around 5 he sat up and played. He only lasted about 20 minutes and then took another good nap. He is still is getting breathing treatments every 2 hours and not getting to eat. Thanks for all the prayers because they have been working! Keep praying and we really appreciate it.

Rough day for Luke

2010-10-13T23:08:00.001-05:00

Luke has had a very rough day in the hospital. Runny noses and congestion led to ear infections for the boys. Jack seems to be recovering fine, but Luke's runny nose has continued and last night he began coughing and gagging on the drainage so much that he could not sleep at all. We have a hospital-grade suction machine at home and have been using it almost hourly on Luke, so when he still had not fallen asleep at 2am, we were out of options.

Since being admitted this morning, Luke has been on oxygen and is having breathing treatments (albuterol and vapor) every 2-3 hours. Even with that, the coughing and restlessness continued. He has not kept any liquids down for 24 hours now, and has an IV for fluids. Around 6pm we moved from a normal/general unit to the intermediate care unit, where the respiratory therapists can watch him closer and give him the extra attention that he needs right now.

The amount of oxygen Luke is being given has increased throughout the day, and it was around 8pm before things started to stabilize. The doctor and therapists still don't like the way his lungs sound, but after his 8pm treatment, Luke was able to sleep for over an hour for the first time in over a day (and I feel so much better after just a little bit of sleep)!

We just finished another breathing treatment, and I think Luke was upset about being woken up. He has loved getting his treatments, but this time he screamed, kicked, arched his back and was so wild that he loosened his IV and had to have it reset. He is resting well now and will continue to be watched closely every 2 hours. Thanks for all the prayers. We will update again tomorrow as things progress.

Luke is just getting settled

2010-10-13T11:54:00.000-05:00

Rachel and Luke arrived at the hospital around 3am this morning. We were trying to get through the night and see our pediatrician today, but Luke could not sleep at all last night. By 2am Rachel was really worried and we started to pack his things up. He spent three days in the hospital with pnemonia this spring, so we know the drill.

Luke is on oxygen (not too much - just 1 liter) and getting checked by respiratory therapists every 4 hours. He is still working extra to breathe, and the constant runny nose just makes it harder.

Pray for rest for Luke and for us. Thanks so much to Mimi (Rachel's mom) for leaving work and watching Jack today. I'll update again tomorrow morning.

Back to the hospital

2010-10-13T03:05:00.001-05:00

Rachel and Luke are on their way to the hospital. Jack and Luke both had ear infections on Friday (Jack one ear, Luke both ears) and have had really runny noses for almost two weeks. Jack is doing a lot better, but Luke has been worse as the day progressed - constant coughing and getting choked up on all the drainage. We had a call in to our pediatrician's nurse to get an appointment ASAP today (Wednesday), but Luke was never able to stop coughing, relax and go to sleep. The ER is pretty full tonight and we really wanted him to make it until we could see our doctor, but that didn't happen. Pray that Luke doesn't have to stay long tonight/this morning and that he recovers soon.

Luke Laughing At His Friend

2010-10-11T14:07:00.002-05:00

Luke loves to laugh. He doesn't do it too much, but especially loves being around other babies. The boys' friend Walker spent the day with us and Luke loved trying to get his attention. Here is the video:

Quick update on the boys' weights

2010-09-30T18:24:00.002-05:00

Mom always reminds me to post updates on the boys' weights. I never think about it - being with them every day, the little changes are hard to see. Rachel will see something new and gets disappointed because I'm not as excited (since I've already seen it - sometimes for a few days already).

We weighed them on their birthday and here are the numbers:
Jack is right at 19 pounds
Luke is 11 pounds, 7 ounces

Boys' First Birthday

2010-09-29T17:19:00.005-05:00

It was a busy week last week! The Barnes grandparents were here for the week and the boys' first birthday was Thursday. We're just starting to look through all of the pictures - here are a few.

Luke playing and watching for his brother

When one starts playing, the other races to join in

Tuesday we went to baby story time at the library

Wednesday we went to a Star Wars party to celebrate the season premiere of The Clone Wars animated series on Cartoon Network

Wednesday night they opened their first presents - squishy, squeaky blocks and a helicopter

Busy Weekend

2010-09-18T12:03:00.003-05:00

It's been a long week. Rachel has not been feeling well all week, so it's been very busy trying to keep up with the boys and everything else. She is at church this weekend for a women's conference. Here are a few pictures from last night.

Not enough time to post much more. Soon after Rachel gets home, I'll be headed to church to do the sound for this weekend's services. Afternoon rehearsals, Saturday evening service, then two more services Sunday morning makes for a fun but very long weekend.

Here are some recent videos. If you are reading this in email, click here to view the actual blog so you can watch them.

Jack and Luke watching one of their Praise Baby DVDs. At the end of the day when they are getting tired and grumpy, this will instantly quiet them and calm them down.

Luke and Jack watching and laughing at each other

Jack does NOT like being in the grass. He stands on one leg like a flamingo.

Lots Of New Pictures

2010-09-13T16:53:00.005-05:00

We are loving the cooler weather - so glad that fall is here! I know it's been two weeks since an update, but we have been taking pictures and trying to keep up with everything the boys are doing. Jack seems to always get more attention and the most pictures, but Luke has been doing more and more lately.

Luke is still under 12 pounds, and every day he's eating as much as he can. He is still on high-calorie formula, but has never really liked trying baby food. Last week we found out why - Rachel had made some toast for breakfast and Luke kept reaching and grabbing for it! He has no interest in baby foods, but wants to skip right to table food. He likes pudding, ice cream, rice, meat and anything else we will let him try.

Luke has one bottom tooth breaking through, but it is very hard to see. He likes to make lots of noise, but keeps those lips tightly closed anytime you want to see inside. Jack has had two bottom teeth for a few weeks. His favorite thing to help his gums has been frozen pacifiers (his regular pacifiers chilled in the freezer). We keep a carrot for him in the refrigerator, and he likes chewing on it for a little while.

Luke is crawling around quite a bit now. He still doesn't go too fast, but can move all over the room to get whatever he wants. He still naps and sleeps in his Nap Nanny sometimes, but this is what happens when we try to keep him still for just a few minutes...

He won't even stay in the swing very long without trying to escape

The boys love playing together, especially now that they are on the floor together a lot.

The boys got Arkansas Razorback gear just in time for football season and wore them for the first game

They also have had Carolina Panthers outfits since before they were born. We've waited and waited and finally got to wear them this weekend for yesterday's game (too bad the boys didn't bring them much luck...)

One more picture of Luke in his favorite PJs

Ready For Fall

2010-09-01T16:17:00.004-05:00

It's been a LONG summer and I am so ready for fall to be here! We have been stuck inside trying to stay cool for what seems like forever. September is here, football season is just around the corner, and I can't wait until the heat is gone for good and we can spend more time outside.

I thought staying home with the boys would give us all kinds of time to take walks, go to the park, or do any other fun things we wanted. But with Rachel gone three days each week working, therapy four days a week, and months of temperatures in the 90s and 100s, some days it's hard not to go crazy being around the boys all the time. When Rachel is home, I usually jump at the chance to run errands, help at church or anything else to get out of the house and be around people who speak with words (not ear-piercing screams).

Sometimes it's hard for us to see, but Jack and Luke are growing and changing every week. Jack has been crawling for about three weeks and Luke learned quickly and started last week. The living room has been rearranged a little and is mostly baby-proofed. Luke stays content and usually plays without moving too far. Jack will crawl all over the place and will follow you everywhere. Here are some pictures from the last month:

Jack trying to get himself under the couch (probably trying to get one of Lily's squeaking tennis balls)

Jack loves playing in the walker and trying to chase Lily

Luke likes having more time in the exersaucer since Jack is spending more time on the floor

Jack is everywhere - even getting stuck under the walker going after a toy

Taking a short nap

Jack laying in his crib

Luke in his crib

This is what we find some mornings - rolling over, trying to get close to each other, sometimes reaching through the middle trying to touch each other...

A Week Of Beginnings

2010-08-24T12:09:00.002-05:00

It's a great week and we have two exciting things to share. The first is that I (Ken) had a great meeting this morning and may have the opportunity to work with Community Connections. They help special needs children by providing free extra-curricular activities like soccer, flag football, dancing and acting classes. I would be able to spend most of my time at home with the boys and would help with fundraising, event planning, marketing and promotion of their programs and activities.

The second (and more exciting) is that we can now share some news from our friends Jesse and Jodie. Here is what she posted last night:

Spring is coming in the McGinley Household. Due April 2011- A miracle of all miracles, the strongest of all heartbeats, a gift that we found out about on August 8th, Eli's 1st Heaven day. God knows whats best for our lives!

They have more details on their blog here.

Jack is now crawling all over the place. Luke is still mostly rolling around to get what he wants. Our house is getting a lot busier these days! I will work on getting some video so you can see for yourself.

Last set of pictures from SC trip

2010-08-20T13:07:00.005-05:00

Here are a few more pictures from our SC visit last month:

Luke and Jack with their grandpa

Luke sitting outside getting ready to swim

The boys swimming in the baby pool

Family picture of our generation with my grandparents

Lots of family pictures + lots of waiting = grumpy and hungry babies. Uncle Frank and Aunt Lisle came down from New York - the picture might not show it, but she loved Luke and wanted to take him home.

The Barnes men

Project E.L.I. Featured On Local News

2010-08-09T17:12:00.002-05:00

Here is a segment about Project E.L.I. that was featured on the local news last night:

Link to video

Eli's Legacy

2010-08-08T22:14:00.003-05:00

It's been a long and busy weekend. Friday night Lindsey, Jesse, Jodie and Walker came over and we had a great time. The boys played together, we had great food, and had a lot of time to relax. We got to know them better and learned a lot more of their story as we all shared what we have been through this past year.

Jack had fun playing with Walker

Lindsey had a great time with her boys

Jesse, Jodie and Walker

We also have some great news to share - we met our fund-raising goal! Those of you who follow the blog know that we have been raising money to send Jesse and Jodie to the AWHONN annual convention next month. This is a national association of women's health, obstetric and neonatal nurses and Eli's nurses will be speaking about him. Eli lived only five days and was born with multiple birth defects, including spina bifida. Through many generous donations, they now have their flight, hotel and money to cover all of their meals and other expenses. Thanks so much to all who gave! We are so happy that everything came together for them. Jesse and Jodie are one of two couples we know of that in the last year have had twins and lost one. At times we question why we were blessed to bring both Jack and Luke home when others do not. We just wanted to do everything we could to help them and it blessed us just as much as we hope the trip blesses them.

Saturday night was the Project E.L.I. documentary premiere, and the turnout was great! Jesse and Jodie's church was filled with over 200 people. Their story was included in a documentary about spina bifida which was just finished and will be sent to hospitals and women's doctors all over the state. It will be a great tool to support expectant parents who have just found out that their child has spina bifida.

After the documentary, Jodie shared a video of their journey. On Saturday, August 28th we will be walking for Eli at the Easter Seals Walk With Me 2010 in downtown Little Rock.

I have pictures and videos of the boys to post this week, but for now, this was much more important.

Celebrating Walker and Eli's Birthday

2010-08-04T06:33:00.004-05:00

Saturday we went to a pool party for Walker and the boys had a great time. Last night we joined many of Jessie and Jodie's family and friends at the cemetery to celebrate Walker and Eli's first birthday. It was the hottest day in 10 years here in Arkansas and when the gathering began at 7pm it was still at least 100 degrees. That didn't matter - there was a great turnout and we were so happy to be there.

(Click any of the pictures for a larger view)

Birthday cake for the twin boys - one here on earth and one in heaven

Walker eating his birthday cupcake

One day he will understand how special this day was

Even Eli received presents: beaded necklace from Hawaii, sand from Florida, a note from Disney World, Mickey Ears from someone else at Disney World, a starfish from Aruba, flowers from his Mimi, and a birdhouse from his Momma & Daddy

Another view of Eli's house

Balloon release for Eli

Video link for email/iPhones/non-flash devices

Walker finishing his cupcake

Video link for email/iPhones/non-flash devices

Birthday message from Eli

Thanks to Jodie and Team Eli for some of these pictures!
The McGinley Family blog
Team E.LI. - today I dance with angels

Pictures from the past two weeks

2010-08-02T14:26:00.004-05:00

Last weekend was our 6th anniversary and the grandparents took care of the boys Saturday and Sunday for us. We just did dinner and a movie - something we haven't done in almost two years. It was so nice to have a full day and night away from the boys - we missed them a lot and talked about them, but it was great to be alone. We started with dinner at Macaroni Grill. Then we went to see the newest Twilight movie. I had no interest at all in seeing it, but Rachel loves all the books and I knew she would enjoy it. I did a little research and made up a "Twilight Survival Kit" that Rachel opened before we left the house. Each item had its own label with a longer explanation on the pack. She was very surprised.

Here's a picture of the goodies - and no, we didn't take it all with us to the theater (just some "blood straws")

Jack likes being on his belly a lot more now and holds himself up pretty well

This weekend we had some new friends over for dinner - Rachel made a mexican feast and Jack wanted to help cut up the avacados

Luke still does not like bath time very much but Jack sure does!

Rachel loves messing with Jack's hair whenever she can

Can't leave Luke out! He is still a tiny little man - almost 11 pounds, but consistently gaining weight (just very slowly)

Meeting More Family

2010-07-29T08:08:00.006-05:00

Here are the boys meeting Aunt Pat and Uncle Doug who came to S.C. from New Jersey.

Our sister-in-law Cailey had an exer-saucer that we borrowed while we were there. It was the same one we have at home, so Luke knew exactly what to do and where everything was!

Four generation picture

Some pictures from the trip

2010-07-19T10:16:00.003-05:00

When we arrived at mom and dad's house, my grandparents were there along with my brother and sister and their families. Mom and Dad come to see the boys every few months, but this was the first time anyone else had seen them. Even though we did not get in until around 8pm, they wanted to be there and did not want to wait until morning to meet them.

Luke is playing with his cousin Zach

Dylan playing with a duck while Jack, Luke and Zach play together

The next morning we took the boys to the adult day care center where Mom works. Her coworkers and clients hear about the boys all the time and they were excited to meet them!

That afternoon, Uncle Jack (Mom's brother) arrived from Virginia. Here's a picture of Jack and Jack together for the first time.

BBQ With The Grandparents

2010-07-14T07:39:00.004-05:00

We have many pictures from Jack and Luke's first vacation over the 4th of July weekend. I've picked out the best and will post more later this week. Last night I had the privilege of sharing about miracles with the men's group, M.A.F.I.A. (Men After Faith, Integrity and Action), at our church. I told the story of the boys and everything Rachel and I have been through since we first started trying to start a family. Preparing for that has taken most of my free time since our trip, and it went very well. I also showed some pictures to allow everyone to see how small the boys were, how much they have been through, and how great they are doing now.

Until the rest of the pictures get posted, here are a few from the end of my parent's trip to the Grand Canyon. They stopped to see us at the beginning and end of their trip. Before leaving to head home, we met them at their favorite Arkansas BBQ place, the Whole Hog Cafe.

Jack and Luke with both sets of grandparents

Luke really wanted to try some sauce

Jack was hungry and wanted some real food

Fun with the family

2010-07-03T08:36:00.001-05:00

We are having a great week spending time with family and friends in South Carolina. Jack and Luke have done very well and been their normal happy selves most of the time. Thursday was a busy day with lots of visitors and the boys had a hard time settling down to go to sleep. Yesterday they went to bed great and they have been sleeping through the night great - just like they do at home.

Wednesday night we had family over to meet the boys when we got home from the airport. Grandma and Grandpa Barnes came over for a bit. Rob and Cailey were here with the boys' cousins, Dylan and Zach. Laura and Sean also came over and brought us food.

Thursday morning our friend Kevin stopped by for a quick visit. By the afternoon, Uncle Jack had arrived from Virginia and Aunt Ginny stopped by to meet the boys. That night, Uncle Doug, Aunt Pat, Jeff, Jen and Kevin arrived from New Jersey. It was Jeff's birthday and we celebrated late with ice cream cake.

Yesterday our friend Ashley stopped by and brought her twin boys Ryan and Gabe. They were crazy and into everything - now I know what to prepare for in a few years. Last night the cousins got together for dinner at Laura and Sean's house. The only one missing was Kyle, but we will see him Sunday when all of the family gets together to take pictures and celebrate Grandpa's 85th birthday

Boys first visit to South Carolina

2010-07-01T07:18:00.001-05:00

The boys had their first trip on an airplane yesterday and did very well! We are in South Carolina for their first visit to the Barnes grandparents' house.

This will be their first time to see their great-grandparents, aunts, uncles, cousins, and other relatives and friends.

Catching up!

2010-06-25T16:28:00.004-05:00

Some of these pictures are older but I wanted to share!
Jack is getting good at making messes. He wants to help with putting the spoon in his mouth and he also likes to "raspberry" when he is eating!

This next picture is from back in April but I love it. I walked in to get Luke up from nap and he was sucking on his oxygen tube. I was laughing and his look says "what is so funny?"

Lindsey came to visit and it was during the boys nap time. I kept them us as long as possible but they crashed:

Just playing:

Luke the day after his surgery with his 2 favorite things: His blanket and his monkey. His uncle Rob and aunt Cailey sent him get-well balloons and the money after his surgery. He LOVES his monkey--Thanks!

Notice the drool pouring down:

To the South Carolina folks--you may need a raincoat when holding Jack!!

I was getting pictures of the boys today and all of a sudden Luke made a fish face! He may never do it again and I am glad I got a picture of it. It cracks me up.

Jack has herpangina. He has the sores on his lip and also in his mouth. The virus should almost be done running its course but he has been a pitiful baby. He isn't eating solids right now and it takes him a while to settle down and go to sleep. Last night he woke up every hour crying. It was a long night! Hopefully he will sleep better tonight.

Jack and Lily Playing On The Floor

2010-06-23T17:06:00.002-05:00

Things just got really quiet. I looked around and saw Lily stretched out on the floor, playing with Jack. Now that Luke is two weeks past his surgery, he can play in the exersaucer again and he is loving it!

Link for iPhones / email / non-flash devices

Your Opportunity To Help A Deserving Family

2010-06-18T11:55:00.003-05:00

Last month we let you know about our desire to send some new friends of ours to a medical conference honoring their son Eli. Jodie and Jesse McGinley (here is their story) had twin boys last August (a month before we had Jack and Luke). Walker is doing great! His brother Eli was born with Spina Bifida, fluid on brain, and many other complications, causing him to leave this Earth less than a week after birth.

A medical conference (AWHONN) is featuring Eli's nurses who will present his case to medical professionals from around the nation. The conference was to be held this month at Opryland Resort in Nashville, Tennessee, but had to be relocated due to the catastrophic flooding that occurred early last month. Jodie and Jesse were planning a quick day trip to Nashville (about a 5-hour drive) to see Eli's case presented. The conference was moved to September at the Venetian Resort in Las Vegas. They cannot afford to make the trip and were devastated at missing the chance to see Eli's story impact others.

Thanks to the wonderful generosity of Rob Kegley, a distant relative that we have not even met, Jodie and Jesse's flights are completely taken care of! We appreciate this so much! That was a big part of the cost, but now we have the rest of the trip to provide for. Jodie mentioned that seeing Eli honored and visiting the Grand Canyon would be the trip of a lifetime, and that is exactly what we would like to give them.

We ask everyone to pray that the remaining money will be raised. The amount needed is $1,500.00, which will cover all of their expenses (hotel, meals, Grand Canyon day trip and a little spending money). $280 has been received so far, and we are asking for ANY amount you may be willing to donate - no gift is too big or too small.

If you would like to donate and help make their dream a reality, please mail checks to Rachel Barnes, 16 High Timber Drive, Maumelle, AR 72113 and write "Team Eli" in the memo line. You can contact us at raebarnes@hotmail.com

Thank you so much for your prayers and please pass this along to anyone who may be interested in helping!

Fun with our two favorite girls

2010-06-12T21:09:00.001-05:00

Last night we had the Rays over for dinner. Rachel's favorite summertime meal is kabobs on the grill, and she was so excited! Ryan and Samantha brought their girls with them - Ryleigh and Rowan. We had a good time eating and watching the girls play.

Tonight we brought the girls home from church to give them a night out. Rachel made a special picnic spot for them on the living room floor.

Another great day for Luke

2010-06-11T14:44:00.001-05:00

Luke is still doing great. His appetite is still good and he is even eating food now! We had trouble getting him to eat more than a few bites of baby food from a spoon, and I especially did not push him leading up to his surgery.

He ate pretty good yesterday while the speech therapist was watching, but we thought he just liked to do well for an audience (Grandma Barnes has had the best luck feeding him so far). Rachel just gave him some sweet corn casserole (baby food) and he loved it!

Luke is doing great

2010-06-10T20:32:00.000-05:00

Luke had a great day! He was a little more tired and cuddly than usual, but was pretty much his normal self all day. His appetite is the same or a little better than before - hopefully he will keep it up and will start to eat more and put on some weight.

The boys started 3 of their 4 therapies last week (physical, speech and occupational). They will eventually start developmental therapy, but for now they get "playtime" on Mondays, Tuesdays and Thursdays. The therapists come to the house, which makes it much easier on us.

We expected Luke's surgery to prevent him from therapy until at least next week. He was in such a good mood today that we decided to give it a try. Luke did great and was able to do a lot! We saw all three therapists today, and the only thing Luke did not do was the physical therapy. That mostly involves working with the legs to do standing and crawling exercises - a little too much for his first day after surgery and not worth pushing him too much. He did fine with everything else and will probably be back to normal next week.

He has a low-grade fever, which is normal, and has only needed Tylenol and Motrin (alternating). He can take a shower, but not a bath for 5 days, so we will stay away from the pool this weekend.

Everyone is back home

2010-06-09T15:21:00.001-05:00

We just got home and can't believe how fast and great today was! We picked up Jack on the way home. Thanks to Mimi and Pop-pop for keeping Jack and Lily last night and today!

After Luke's hospital visit for pnemonia in April, I was all packed and ready to spend the night. It's so good to be back home and not have to worry about being woken up by nurses all night.

Luke did great and woke right up as soon as we went back to see him. The doctor was very happy and was able to do everything the easiest and best way possible. Luke's appetite appears to be back to normal already, so we're looking forward to taking it easy the rest of the week and having a lot of extra cuddle time.

Thanks to everyone for the prayers. I am amazed at how great and stress-free this has been and I know that is why.

Almost ready to go home

2010-06-09T13:31:00.001-05:00

Luke is going great! Wide awake and just ate most of a bottle. Looks like we may be leaving soon!

Starting to wake up

2010-06-09T12:24:00.001-05:00

Just got to see Luke in recovery. Still pretty groggy and just starting to open his eyes a little.

In recovery!

2010-06-09T11:47:00.001-05:00

Doctor said he did great and that if he keeps doing good then he can come home later today!! Thanks for the prayers! We will be able to go see him soon!

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Off too surgery

2010-06-09T10:39:00.001-05:00

Just rolled off to surgery.,.

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Getting ready

2010-06-09T09:29:00.001-05:00

Just got a breathing treatment, met a couple of the doctors, and waiting for the main doctor. After we meet him we will head to the OR.

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Just checked in at the hospital

2010-06-09T08:06:00.001-05:00

Luke just finished getting weighed, measured and changed into his hospital gown.

Surgury time change

2010-06-08T13:01:00.001-05:00

Luke's surgery has been pushed back to 10am tomorrow. He was first on the schedule, but was bumped because of an inpatient surgery. We will be at the hospital at 8am and post updates when we can.

Luke is having surgery

2010-06-07T17:40:00.002-05:00

Luke will be having surgery this Wednesday to fix his two hernias and
do his circumcision (he was still too small to do it when he came home
from the hospital in January). He is scheduled for 8:30am (CT) and we
expect him to stay one night for observation.

Thanks for your thoughts and prayers. I will post updates throughout
the day on Wednesday, so check here for the latest.

Pictures of the boys' first swim

2010-06-04T10:07:00.006-05:00

Jack and Luke had a great time Friday night staying with Grandma and Grandpa at the campground. Saturday afternoon was their first time to swim.

The smallest swimmer diapers are still too big for Luke's waist, so duct tape saved the day! It worked great and we will probably have to do that all summer.

Jack loved sitting back in his raft and splashing around in the water

Mimi came to see them too

Getting Jack ready to go underwater

Luke was too small to be comfortable in the raft but did well being held

Aunt Robyn found a hat small enough to fit Luke

Jack was in the water over an hour but Luke tired out pretty quickly

Getting ready for the boys' first swim

2010-06-03T18:31:00.009-05:00

The Barnes grandparents were back to visit last weekend. They had been out west for almost 2 weeks seeing the Grand Canyon and many other sites and stopped here on their way back home for three more days with the boys.

They stayed at the campground and we decided to let the boys take their first swim there since the city pool does not allow any kind of rafts or floating toys.

Rachel had to work on Friday, but the rest of us went to the mall looking for baby sunglasses and matching swimsuits for the boys.

The smallest sunglasses were still way too big for Luke...

Jack and Luke spent Friday night with the grandparents

They are still small enough to fit together in their pack-and-play

Some more videos of the boys

2010-05-27T09:49:00.004-05:00

Here are two more videos of the boys. More pictures and updates are planned for next week. The Barnes grandparents will be back this afternoon and stay until Sunday. The city pool opens this weekend and we plan to take the boys for their first swim on Saturday.

Jack laying on the floor (video):

Link for iPhones/email/non-flash devices

Luke and Jack (video):

Link for iPhones/email/non-flash devices

Video of baby dedication

2010-05-24T13:54:00.003-05:00

Saturday night was baby dedication at church. They have one every few months, and the last one was right before Luke was finished with his oxygen and pulse/ox monitor. This was a very small dedication with a total of five babies (sometimes there can be 15-20 or more). The timing was one week off, since the Barnes grandparents were here the weekend before and will be back to visit this weekend finishing up their trip out west.

Here is a video of us with the Elms grandparents and surrounded by our pastors:

Link for iPhones/non-flash devices:
http://www.youtube.com/watch?v=ElQywyuTi2Y

Raising Support!

2010-05-18T19:34:00.001-05:00

I want to start out by saying that I normally don't send out massive links/letters for financial support. I will pass along prayer requests anytime but raising money is different. Ken and I have decided that we both feel pressed to help this family.

Jodie and Jesse have touched our lives with their ability to turn a tragedy into something meaningful. There are many days that I read what they are doing to remember the life of their baby boy and I just cry because I am so touched and amazed. Ken and I almost lost Luke several times and I am sure that we would not have handled it with as much grace, strength, and inspiration as Jodie and Jesse. Many times I read the words that are written and think "this could have been our heartbreak very easily. One single moment and a turn for the worse and we could have been writing how we lost Luke."

The reason that I am writing this letter is because we want to help them get to Las Vegas! I know what you are thinking- Las Vegas, why would they need a fund raiser to go to Vegas! Their son's medical case was going to be presented in Nashville, TN in June at the Opryland Hotel. The flooding has changed those plans and it is now going to be in Vegas. Jodie and James were going to go to Nashville since it would be easy to drive but now they are not able to go due to limited income! (Ken and I understand because we too are a one-income family!). The AWHONN Conference is scheduled for the last weekend of September and they will present Eli's case and use his story to educate others.

Jodie, Jesse, and Walker (Eli's twin brother) could use this trip as a much needed vacation but also get to see their son's short life being used for a purpose. In one of Jodie's blogs she wrote:

We accepted Eli for what we 'thought' was to come. But even when it wasn't what we were told, we accepted that he was created for a reason. And one of the last things I told Eli as I held him in my arms was to 'come back to me', meaning I wanted to know he was alive in that other baby (they did ARORA). I wanted to know he was serving his purpose.

Jodie and Jesse have done many things to make Eli's short life have a purpose including:
1. Donating to ARORA
2. Team Eli- To educate Spina Bifida Awareness & Organ Donation
3. Project E.L.I. Documentary to be released Summer 2010.
4. Eli's Garden of Hope & Dreams-- for I CAN! Dance Arts & Resource Center
5. did an interview with KARK
and much more.........

Any amount would be appreciated. We hope to raise enough to be able to purchase plane tickets and hotel rooms for them. I would love to have it all together by the end of July. Pray about it and see where God leads you!

Thanks!
Rachel and Ken Barnes
raebarnes@hotmail.com

Here are the links to read about their story:
http://mcginleybabyjourneystory.blogspot.com/2010/03/how-it-all-began.html
http://www.facebook.com/?ref=logo#!/note.php?note_id=102012769842079

What I deal with most afternoons...

2010-05-13T19:43:00.004-05:00

The Barnes grandparents will be here today and tomorrow on their way out west to the Grand Canyon. The boys are ready to see them again, and I am ready for them to get the extra attention so I get a little break. Jack and Luke did not want to nap at all today and were in terrible moods the rest of the afternoon.

Here is a look at how they are most days between around 4pm and bedtime (usually 7pm)...

Link for iPhones:
http://www.youtube.com/watch?v=UgrapQdYJHw

Online photo album

2010-05-12T07:18:00.002-05:00

We received all of the pictures from the boys' photo session and love how they turned out! I won't take the time to post every picture here, but you can see all of the pictures in our Kodak gallery.

Click here to see the pictures and let us know what you think!

The boys have kept us very busy - as they grow and do more, the schedule and routine gets more complicated. With two of them, there is always something to do. As soon as one gets happy and quiet, the other needs something... We keep the cameras out and try to capture new things as they happen. Stay tuned as we will add pictures and updates in the next few days.

The boys professional pictures

2010-04-20T14:40:00.004-05:00

Gretchen Davis came Saturday morning and did the boys pictures. Jack HATED the outdoor pictures and both boys were super serious and didn't want to smile much. I love that Gretchen used natural lighting and not many props. We enjoyed our time and I think the preview pictures are amazing--especially since Luke ended up in the hospital later that day!