This is our new puppy Jack. He is bigger now. He likes to chew on things. :)

Our new house

Danny and I are trying to buy this house:

http://fortwayne.rapmls.com/scripts/mgrqispi.dll?APPNAME=Fortwayne&PRGNAME=MLSPropertyDetail&ARGUMENTS=-N311617808,-N246196,-N,-A,-N7927244

To view: copy entire address, paste into the search bar of your browser, and hit enter.


It is a short sale so we are negotiating directly with the seller's bank. It may take a couple of months, but it will be well worth it. The property is three houses down from my brother Don. To say the least, we will be spending more time with their family when we move!

Rainy Saturday

It has been a little over a week since Lily died. I'm still crying. Today we are going to the cemetery to pick out a memorial stone. We have decided that we will be going with a simple one at first, and will save for a bigger more beautiful one.

So many people have come together for us. It is overwhelming at times in a good way. I guess it makes it a little bit easier knowing that so many people love and care about you. I am truly blessed.

We are having lots of rain right now and it is supposed to continue through Monday. It seems fitting to me right now.

Love to all,
Barb

Sunshine and big fluffy clouds

It was a beautiful day to lay Lily to rest. There were so many family and friends there and we were so happy to see them all.

Father Dave said a few words and several prayers and it was wonderful.

We all enjoyed time together afterward at Don and Bev's home eating, talking and laughing. It was wonderful being with our family and friends.

Thank you again for your thoughts and prayers and for all your help during this time.

We love you all,
Barb and Dan

Funeral arrangements

Visitation will be on Monday, September 8, 2008 from 7-9 pm at the D.O. McComb & Sons funeral home at 1140 Lake Avenue, Fort Wayne, Indiana.

There will be a grave side service on Tuesday, September 9, 2008 at 11:30 at Lindenwood cemetery located at 2324 West Main Street, Fort Wayne, Indiana. Burial will be in the Babyland section.

There will be a luncheon after the burial at Don and Bev Jenkins' home. Directions will be provided at the visitation and burial.

Flowers or gifts to the memorial fund would be greatly appreciated.

Lily Anna Rose Kilgore

Lily decided it was time to go to heaven. On Thursday around 2.40 in the afternoon, Lily passed from this life. She struggled and fought, but in the end, her heart just wasn't strong enough.

Our family would like to thank everyone for their thoughts and prayers during the past five weeks.

This will be a very difficult time for us, and we know that you will continue to pray for us.

Please know that we understand that God has a plan for us all and that we accept his plan for Lily. Keep in your hearts that God has a plan for your life too. And when it rains, think of Lily, and know that the angels are crying because they feel our pain. But also rejoice, because we were able to have Lily in our lives even if it was only for a short time.

Funeral arrangements are being made through D.O. McComb and more information will be coming after today.

We want to thank all the kind and caring staff at Riley Hospital especially Dr. Rodefeld, Erika and Gretchen for all they did for our family. Also, we want to thank the staff at the Ronald McDonald House for the place they provided to us and for the kindness and comforts they offered to us as well.

Lily will be laid to rest in Lindenwood cemetery.

Love to all,
Barb

Thursday

Against all odds, Lily is responding and improving. We were so sure that she wasn't going to make it. I guess God and Lily had different plans.

It has been a rollercoaster ride emotionally and we are all so tired.

Ryan, Angie, Xander, Kris, Angie, Danny and I have been here with Jen and Lily all night. When this first started, they weren't sure that she would make it out of surgery, then to her room, then through the day, then through the night. And here she is, doing well. They have lowered her epi/cal which is the medicine helping her heart beat. It is doing the same without the medicine. That means her heart is getting stronger.

We were on the brink of letting her go, and God isn't ready for her yet.

Please continue to keep us in your thoughts and prayers. We all need it.

Love to all,
Barb

Tuesday...Cheers!!

Lily is down to 120 flow. They are planning on taking her off of ECMO tomorrow!! Yipee!!

This is such good news. I will be staying down in Indy until at least Friday as long as everything is going ok.

Prayers work!!

Love to all,
Barb

Holding steady

Lily had a great night! She is holding steady at an ECMO flow of 300. They are going to keep her there at that level until tomorrow. She is still peeing, her blood pressure is holding and her heart rate is good. Let's hope that tomorrow is as good as today.

Love to all,
Barb

ECMO flow down to 300!

More good news! Lily's ECMO flow has been lowered from 400 to 300 and she is tolerating it!! And she's still peeing!! Yipee!!

At first, when her flow was at 320, they had to raise it to 400 to get her kidney's to work. But now that her kidneys have recovered, she is able to go down on her flow. They will keep her at this level for the rest of the night to make sure everything is ok.

Her blood pressure and heart rate is also keeping up with the changes. Just one more indication that all your thoughts and prayers have been helping! Thank you so much.

Love to all,
Barb

Happy Sunday!

Lily keeps amazing us all. Since she is peeing so well, and since her blood pressures are staying up, they have decided to start to wean her pressures down on the ECMO. They want to take her from 400 down to 300. This will be a very SLOW progression, but it is a step or three or four in the right direction.

I am home for a couple of days enjoying my own house, cooking in my kitchen, sleeping in my won bed and enjoying some time with my family. Also, Danny's Mom, Dad, and Grandmother are visiting from Nevada/California and it has been nice visiting with them.

Again, thank you for keeping Lily in your thoughts and prayers. She is a strong little baby and is making progress a little at a time with all of your help.

Love to all,
Barb
ps...hello to all you lurkers out there....post a comment and say hi!

Grumpy Thursday

Ok...I'm a grump today. Grrrr.......

First, I was rudely awoken to the smell of cigarette smoke at 7am. Yuck! Then we had to get up early so they could "deep clean" our room. Then we find out that they upped Lily's anti-seizure medicine and didn't tell us!! Argh.....

Ok...I feel better. Dr. Rodefeld just came and talked to us about everything that is going on. He feels that Lily has turned the corner. Her urine output is doing well and her heart function is stronger than two days ago. The only thing that is a little concerning is that they raised her phenobarbital level because they picked up some "background" seizure activity. What this means, I have no idea. The neurologists have not spoken with us yet. However, Dr. Rodefeld is not concerned about this and is in total support of the change in medication level. So, since I trust him, I won't worry about it anymore.

Tomorrow morning they are going to change Lily's ECMO circuit. They are giving her a dose of steroids beforehand which will help with her transition to a new machine. However, this does raise her chance of infection. Lily may have a rough day and they are expecting her values to drop, and for her to become swollen. This may not happen, but they prepared us for it. The change will happen around 9am. It shouldn't be a big deal, but we are going to be here just in case.

This weekend, Dr. Rodefeld wants Lily to rest, and continue to work on getting the rest of the fluid off. Once this happens, they will start to more actively wean her from the ECMO. He is shooting for her being off by next weekend. But, as we all know, things can change quickly.

Another good thing is that he is optimistic that she is getting better and will be able to come off ECMO. I was really glad to hear that.

I am going to go out and take pictures later today and will be posting them later. I really haven't shown you where we are staying or what the hospital looks like on the inside. So, look for that on tomorrow's post.

That is all for today unless we hear something different. I am really trying to keep my composure and be patient, but sometimes it gets hard. :)

Love to all,
Barb

Poopie Wednesday!

Yay!! Lily pooped!! This is good because it means that enough blood is flowing to her intestines to make them work. Yipee! The nurse told me this morning that she almost overfilled her diaper. hee hee

Lily is also continuing to pee. Her goal today is to pee more out than what is put in. So, happy pee pee thoughts to Lily.

They also did an EEG and an echocardiogram on her this morning. I will update you all when I get the results. Grandma is hanging out at the Ronald McDonald house today because she has a sniffly nose. I'm not sure if it is my allergies or a cold and I'm not going to take a chance.

Thank you all for the birthday wishes and the gifts. Wendy, the chocolate cake was the best I've ever had. Yum!!

Love to all,
Barb

It worked!

The pee-pee dance worked! Woo hoo!! Lily is peeing! Yipee!!

She looks so much better today. Yesterday she was so swollen. I'm glad to see her little nose again and they can actually open her eyes.

She is also breathing better. They have turned up her vent settings a bit and they are giving her breathing treatments. You can see her chest going up and down now. You really couldn't see that before.

Also, she is becoming more pulsatile. That means her heart is coming out of the stunned state and starting to beat more strongly on it's own. That is also good news.

The swelling should take about four days to go back down totally. Once her kidneys are working better they will start to wean her off of the ECMO.

It has been a great day so far.

Love to all,
Barb
ps..thanks for the birthday wishes! :)

Pee Lily!! Pee!!

I thought a pee-pee cheer might help... LOL! Lily is not peeing enough. She is on two diuretics but is still not peeing as much as she needs to. So, they turned the ECMO machine up to provide more blood circulation to her kidneys. Her output has increased, and we will see how it goes. Other than that, she is doing about the same. She is really puffy, but that is to be expected.

I knit Lily a pair of socks and I'm not sure if I put a picture of them on here or not. Just to be safe, here is another picture:

Yes, one is smaller. I got impatient and didn't make it long enough. I guess I will have to take out the toe and make it longer. It may be easier to knit another sock!! :)

I am making a hat to match and a sweater. The sweater has me a little nervous, but I think I can do it. We'll see...

I want to thank my co-workers and friends Sharon and Carol for the cards and words of encouragement. It means a lot to us all. And thank you so much Sharon for the extra. It will really help.

Grandpa was here today visiting but he had to go back home. He can't wait to hold Lily for the first time. I think Grandpa is going to be spoiling little Lily when she comes home.

We are all hanging in there as well as we can. The waiting gets to you sometimes, but we are learning how to be more patient.

Love to all,
Barb

Sunday and another ultrasound

They did another ultrasound on Lily's brain today. The doctors are reading it right now and we will find out more later.

Lily has decided that she doesn't want to pee as much as she should so they have upped her diuretics. Her numbers (pee output) are still in the acceptable range, so things are ok right now.

Lily did not have any "episodes" overnight which is a good thing. Lily has decided that she likes to have a barrette in her hair:


Tomorrow, they will start to try to wean her from the ECMO machine. It is a very delicate process and it may take several days depending on how her heart responds.

We will keep you updated.

Love to all,

Barb

Sunny Saturday

First I want to thank my bestest friends Wendy and Mary for coming down last night and restoring some of my sanity. I am so grateful for such awesome friends. I love you!

Saturday brought some new changes. Lily has been having "episodes" that they thought were seizures. They did an EEG and found out that they aren't seizures and that her brain function is lower than expected. This may be due to either the amount of meds she is on, the procedure, the ECMO, or she has brain damage. They will be doing another EEG at the end of the week. I am planning on staying down in Indy as long as Lily is on the ECMO machine. She is in very critical condition right now and I don't want to take the chance that something could happen and I wouldn't be here for Jennifer and Lily. Here are some pictures of the ECMO and little Lily:
She has a lot of lines running in and out of her right now. You can see the lines that carry the blood to and from her body to the ECMO machine. Lily is the 641st child to be put on ECMO here at Riley's. They have parties twice a year for the kids who have been on ECMO. It is encouraging to read the success stories from other families who have had a child/grandchild on the ECMO.

Here is another shot of the ECMO:










To me, it is amazing that this machine can oxygenate, warm, pump, breathe for Lily. Wow!

Here is another picture of our little princess:
















Dan, Mandy, Andrea, Allison, and Alexa came down to visit today. They took us out to a tasty dinner at Applebees. Yum! Here is a wonderful picture of them:

It is so wonderful having such supportive loving family. We are truly blessed. And they're cute!

Thanks again to everyone who is praying for Lily and us. It really helps. Thanks to our friends and family whose support is invaluable. Words alone can not tell you how much you all mean to us and how much you are helping us. And a big thank you to my wonderful husband Danny. I love you.

Love to you all,
Barb

Friday, August 22

Lily's surgery went very well. Dr. Rodefeld commented that it couldn't have gone better. This morning she was doing so well that they took her back to surgery and closed her breast bone.

However, babies that have the Norwood surgery can have serious changes very quickly.

Ten minutes after they brought Lily back to her room she went into cardiac arrest. The nurse immediately started CPR and the surgeon, Dr. Rodefeld, came right down to assist Lily. They did compressions for an hour and a half and then put her on life support (ECMO). The ECMO machine oxygenates and circulates Lily's blood for her.

Because she was on manual compressions for so long there is a chance for brain damage or a brain bleed. They will be doing an ultrasound on Lily's brain later today. Also, there is a chance that she could have a stroke or a seizure. She is in very serious condition, and there is a chance that she will not be strong enough to make it.

Her heart did start to beat again, and they are still in the process of getting her stable. There are two nurses by her bedside 24 hours a day now. Also, there are doctors, nurse practitioners and other medical personnel right outside her door.

This is going to be a minute by minute, hour by hour, day by day rollercoaster for the next couple of days.

Her is a picture of Lily right before her surgery:


Please keep us all in your thoughts and prayers.

Love to all,
Barb

Thursday surgery

Ok...surgery is on Thursday. For sure......not kidding this time.

Pray for little Lily.

Love to all,
Barb

No sugery on Wednesday

Ok....so, would you be irritated if you drove down to Indy from Fort Wayne, and just as you were walking into the building you found out that surgery was canceled? And that they made the decision six hours before and "forgot" to call you? And you took more time off work as well as your spouse, so you both would be missing eight more hours of pay?? Yeah....that's what happened.
-
I don't care that the surgery was delayed again. Lily needs to be in the best health possible to undergo the very lengthy and serious procedure that is ahead of her. I guess she is having some bowel problems. The doctors aren't sure if it is another infection or just gas. Either way, they will not compromise Lily in any way. It would be very very bad if she developed an infection or some other problem in her gut and have chest surgery too.

So, we are playing the waiting game again. I am going back to work today and will work out the rest of the week. I'm off Friday and will be going down to Indy to visit Jen and Lily. I'm off Monday too and will be going back down then too. I hope we will find out more by then.

If you want to call Jennifer, you can leave a message on her voicemail in the room. They (Ronald McDonald House) only take calls between 9am and 9.30pm. The number is: 317-269-2247. I'm sure she would love to hear from anyone.

On Monday, Jennifer started scrap booking. She really enjoys it and I'm glad she has found something to do with her time.

Thanks for your continued support with thoughts and prayers.

Love to all,
Barb

Wednesday is the day

Ok.....I'm getting tired of the ups and downs. First they called me and told me that the surgery was off for now because Lily has an infection and the doctors wanted her to have a full seven days of antibiotics. Plus, her belly x-ray looked a little funny.

Now, they are saying that the surgery is on for Wednesday. First surgery. And on Wednesdays that means 8.30 am. (I guess the anesthesia docs have a meeting on Wednesday mornings so it is a little later than normal...ok with me!!!.....)

So, I guess her infection is clearing up and they aren't worried. If anyone wants to know, it was a gram negative staph. (It was so cool that I actually knew what they were talking about...hee hee...)

Anyway, one more night at home and then tomorrow we will be heading down. Unless plans change....again.....

I'm smiling!! See it??? REallly!! That is a great BIG SMILE!!!

Love to all,
Barb

Sunday rest

I'm home for the weekend. Lily is doing well. She is stable and so far is behaving herself.

They put in a central line on Friday so now she has a permanent line that they can use for surgery. The also got another IV line in her hand so they could give her some blood. Her blood count was a little low, so they want to make sure that she is ok for her surgery on Tuesday.

Lily continues to "desat" and they have been manually bagging her which brings her oxygen level up faster than if they try to let her do it on her own. One of her blood cultures also came back positive with a gram positive cocci. This could be just a normal skin flora so nothing to get excited about right now. I'll post more info as I get it.

Danny and I will be going back down on Monday evening so we will be there with Jen and Lily on Tuesday for Lily's surgery.

That's all I know for now.

Love to all,
Barb
ps...We just got Lily's hospital bill from Lutheran...three days $20,000. Thank you God for insurance and thank you all for paying taxes!

Another delay

Once again Princess Lily has decided that she doesn't want to go and have a procedure. Her white blood cell count is elevated again, so as a precaution she has been put on two high power antibiotics. They also took blood for blood cultures. Hopefully her count is up due to stress and not from infection. They have her on the schedule tomorrow to have her line placed.

Another problem that she is having is her oxygen saturation has been dropping. Lily is having problems breathing deep enough to keep her oxygen levels up. So, the settings on the vent have been increased to give Lily a deeper breath. She is doing better since they increased the settings, but is still having episodes of de-saturation. This is perfectly normal with Lily's type of heart problem so we aren't too worried about it. However, they nurses are keeping an extra close eye on her because they have had to manually bag her several times a day. Again, nothing to worry about right now. This will continue after her surgery.

One of the goals right now is to keep Lily calm and stable. To help her stay that way they have been giving her a mixture of different drugs including Morphine and Atavan. They are also using another one, but I can't remember what it is!! Ugh.

One more thing...Lily is down to only one IV line. Her other IV lines failed last night and they had to take them out. This is pretty normal, but they are unable to get any other lines in. So, it is really important that they place the central line as soon as possible. The only line she has going right now is her umbilical artery line.

So, that is all I know for right now. Drop me a note if you have any questions and keep the positive vibes coming.

Love to all,
Barb

Happy Wednesday

First I want to thank my wonderful husband for being so supportive and for taking a bunch of the pictures I've posted on the site. Thank you Danny. I love you.

As for our plans. Right now I am planning on going home sometime on Saturday and coming back Monday. Jennifer is going to stay here and Kris and Angie are coming back to stay with her Saturday night.

I would not suggest coming this weekend. Next weekend would probably be better. By that time Lily will have had her surgery and things will have calmed down.

Today's Lily update:
The nurses are concerned about Lily's IV's. Lily was supposed to get a permanent arterial line on Monday when she had her surgery but since it was canceled, she still has her umbilical arterial line plus two other regular IV lines. They don't usually leave the umbilical line in so long because it is so close to the diaper area it can become infected. Her oxygen saturation levels have been staying up, and she is only "de-sating" when she is getting secretions in her vent tubing. After they suction her vent, her "sats" go back up. This is a good thing! I haven't gone back to see her yet today, but if I find out anything more, I will post it later.

That's all for now. Thank you to everyone for their words of encouragement. We need them right now.

Love to all,
Barb

Surgery next week

That's right...you read correctly. The surgery is now scheduled for next Tuesday. Why the wait you might wonder? Well...since the first surgery was delayed it put Lily back in line and the doctor's schedule is full until then. So, the only way Lily's surgery will take place sooner is if another already scheduled surgery is put off or if Lily's condition worsens. We hope for the first option.

The upside to this is that Lily has another week to grow. Bigger babies with bigger hearts are always better to do surgery on.

On a different note.....

Here is a picture of Riley's lobby:


They have tons of comfy chairs and couches. It is great.

Angie, Kris, Jameson and Darby came to visit today. It was wonderful to see them all. It really helps break the day up when family comes to visit. We had a tasty breakfast and an equally tasty lunch.

Well...time to go kiss some grandbabies.

Love to all,
Barb

No surgery on Tuesday

What a rollercoaster ride! The neonatologist jumped the gun by telling us that the surgery would be tomorrow. After talking to the surgeon, we found out that her surgery won't be until mid to late week. So, we'll keep you updated as we find out more.

Love to all,
Barb

Surgery on Tuesday

The neonatologist just informed Jen that the surgery will be tomorrow. We will find out what time when the surgeon comes for rounds.

We'll keep you updated.

Love to all,
Barb

Monday August 11

Hello Everyone and greetings from Riley Hospital.

It has been a busy weekend, and I'm sorry I didn't update the site sooner.

The surgery has been put off for now. We will find out later today if it will be going on tomorrow. The final decision is up to the surgeon, Dr. Rodefeld, and he should be here sometime this afternoon.

Lily's white blood count was elevated for a couple of days, and the doctors weren't sure if she had an infection or if it was up because of the medication or stress. Her blood and urine cultures came back negative so it looks like it was because of the meds. Her is a picture of all the equipment that Lily has hooked up to her.

I'm sure you can see why she might be a little stressed out! The machine in front is the ventilator. She has had a little trouble keeping her oxygen levels up, so they have to manually "bag" her occasionally. Again, this is a side effect of the medicines (prostaglandins) that are keeping her PDA open. They are lowering the level of prostaglandins and this should help Lily keep her O2 saturations up. As soon as they start the surgery, they will disconnect the PDA and stop the prostaglandins. This will help Lily breathe better.

We got a room at the Ronald McDonald House. It is very nice. We have a queen size and a twin bed in the room. There are mats available if anyone else wants to stay the night. They provide towels and toiletries, and there is a stocked kitchen. So, we have a place to stay and food to eat. They have extra space to store things if we bring in our own food. I can't say enough good things about the people at the house. They are wonderful, full of compassion and so helpful. We are so lucky to have a place like the Ronald McDonald House (RMH). If you want to help, please start to save your pop tabs. Last year, the house here raised $400,000 to help pay for costs just from pop tabs. If you collect them, give them to me and I'll make sure they get to the RMH. There are 47 rooms and some apartments at the house and they are full all the time. They help a lot of people and can use all the help they can get. They are staffed with mostly volunteers and each guest helps too by cleaning their own rooms and doing their own laundry. I will do my best to get some pictures of the beautiful facility and post it.

Ryan, Angie, Xander, Gail, and Chuck came down yesterday and took us out to Eagle Glen park for a cookout. The park is beautiful and the food was DELISH! Thank you to all of them for providing a good meal and good company. We saw several deer in the park.
Here is a picture of four of them: ----------->
The deer were so tame that they didn't run away from the cars when we drove by. There is also a nice lake with a marina. They have live music several nights a week. Very nice. Indy has lots of parks and people were out riding bikes, walking and rollerblading.


Here are a couple more pics of Lily.





Lily looks a little puffy in these pictures. Her swelling has gone down a bit, and she isn't as puffy now.

I will update the site when we find out more.

Love to all,
Barb

Monday and Surgery

Lily will be having surgery on Monday. More details to follow.

We will be meeting with the doctors at Riley's tomorrow (Saturday) .

Love to all,
Barb

Change

A short while after I posted the news yesterday, Lily took a turn for the worse. Her PDA finally started to close and she started having trouble breathing. The doctors decided to start giving her prostaglandins to keep the PDA open. This helped at first, but later in the evening they made the big decision to put Lily on a ventilator. I received a call at work last night at about 11.15pm letting me know that she was doing pretty well and that she had gone through the intubation without any trouble.

Today, the doctors and surgeons are meeting to formulate a plan. As of now, they are planning on doing a Norwood procedure which will make Lily's heart a one ventrical heart. Here is a link:

http://www.medicinenet.com/noonan_syndrome/article.htm

This procedure is a three step series of operations, all of which are very serious in nature. Please continue to keep Lily and Jennifer in your thoughts and prayers.

I will find out more later today and will pass on information as I can. Danny, Jennifer and I will be going down to Indy on Saturday and will be staying until Sunday, as of right now.

Love to all,
Barb

Good News

Hello Everyone!

Today brings some good news. Lily is getting her arterial line taken out. The doctors ordered some more blood tests and as soon as they are drawn, the line comes out. That means that we can start to hold her now.

Also, this means that the doctors do not think that Lily will need emergency drugs if and when her PDA closes. This is awesome! The doctors also think that Lily's PDA is so small that if there were going to be any adverse effects they would have already happened.

Ok...now for other news. Lily may have Noonan Syndrome. Here is a link to find out more:
http://www.medicinenet.com/noonan_syndrome/article.htm

Blood was drawn for testing today, and we will have to wait 4-6 weeks for results.

The doctors are also talking about moving Lily out of the NICU to another unit. They are still formulating a plan and we should find out by tomorrow what they are planning on doing.

Lily doesn't have to be under the light any longer either! Woo hoo! Her bilirubin levels are coming down. So, no more sunbathing for Lily. :)

Also, Lily has a feeding tube again. Her heart rate is up and they think it is best to feed her by tube because nippling can also cause her heart rate to rise. The tube is not a bad thing, only a necessary thing for right now. She will probably be off the tube feeding soon.

Thats all I know for now. Please keep the prayers and good thoughts coming. Stress levels are high around here and we need the positive vibage.

Love to all,
Barb

Aug

Hello!

Hello Everyone!

Danny and I decided to make a website for everyone to visit to keep up with us and right now with Lily. Here is a picture of our little Princess. She is taking a break from sunbathing. She is under a light right now to help bring down her bilirubin. Nothing serious!

Today's update:
Lily's blood chromosome report came back normal. This is fantastic! Doctors were thinking that she might have Down's Syndrome but the test rules this out. Also a couple of other genetic tests came back normal. AWESOME!
Her vitals are still stable, and she is going to have another echo cardiogram tomorrow. Hopefully we will be able to see if her PDA has closed or not. (PDA=pulmonary ductus arteriosis) Everyone from the doctors to the nurses are very positive about what is going to happen when the PDA closes...nothing! We are getting good feedback that Lily will be able to compensate when the ductus closes. Lily has decided that she doesn't want to eat as much, so she may have to have a feeding tube put back in. Let's hope she is just going through a "I'm not too hungry" stage and will be eating again like she was before.

Danny, Jennifer and I will be going back down to Riley's this weekend (as long as there aren't any changes...)

Keep up the positive energy, prayers and thoughts. They are working and God is watching over all of us.

Love to all,
Barb and Dan