ng! Sorry if these updates are all messed up, i have been sending them through text messages.

ropped once but not like it did earlier. He still seems to be in quite a bit of pain though. Thanks to everyone for keeping up and praying, keep it comi

y, and he woke up and started crying really hard which got the oxygen going back to normal. We are now up in ICU and things are much better. His O2 has d

arted running in. They had to call the MET in there. They said it was close to a code blue. They had to reverse all the pain meds and sedation immediatel

on him and it came back up. Once we got in his room the nurse started her assessment and it happened again. He turned blue and then a bunch of people st

Wow, where to start. When Layne was in recovery he started to turn blue, I was with him at the time, and his O2 level dropped down to 48. They put oxygen

The surgery is over. It went well except for a small amount of bleeding. They are waking him up now, we havent seen him yet though.

They just took him back to the operating room. I am very nervous so everyone please pray. He will have to be intubated during the surgery.

We are waiting in pre-op at this time. He should be going in soon. They gave him versed to relax and he is being pretty funny!

Surgery Tomorrow

We are heading to Dallas here in a little bit. We have to be at the hospital at 8:00 tomorrow morning. I can update the blog via text messaging now so I will be updating when he goes in for surgery and when he comes out to let everyone know he made it safely.

Please pray that Layne makes it through the surgery ok and that his recovery goes very well. I am mostly worried about the pain he will feel once the surgery is over, I don't want him to be hurting.

Thanks!

Surgery is Scheduled!

I got the call that the surgery is all set for Monday the 27th(this coming monday)! That is also Layne's Pappy's b-day! We have an appointment tomorrow for a work-up. I am ready to get this all behind us!!!!

Still Doing Better!

Layne is still doing alot better! He has vomited twice since my last post, but both times it was due to coughing and choking, poor guy. He seems much happier though! He even let us sleep in today until almost 9!! Early this morning about 5 he was coughing so hard and he threw up:( but the crazy thing is he put himself back to sleep!! I was amazed as this has never happened before!

I am going to call the GI doctor tomorrow to let them know that Layne seems better so we can get the surgery re-planned. I hope it doesn't take too long, I am ready to get it over with. He is taking his feeds normally now and tolerating them! I guess that's about all the news I have for now!

Doing Better?

We have made it 24hrs without Layne vomiting!! YAY! I hope this means he is doing better! We have even been giving him only formula! We give it slower though, over an hour instead of 30 minutes. He seems to be much happier today and you can barely tell he has a cold! I have got to put him down alot today without much crying! That's good because now I have caught whatever he has and I am not feeling well.

Thanks everyone for praying...I believe it did the trick!!! His surgery does have to be put off for a little while, I have to call them when he feels better and we will reschedule. Hopefully we won't have to wait too long.

Prayers Please!

**UPDATE**

We have spoke with Layne's doctors and they suggested trying powerade zero and if that was tolerated then half powerade zero and half formula. Well he tolerated the powerade zero alone but halfway through the half/half he vomited again. So I informed them of that and at the moment we are trying a 2/3 mixture, 2ozs powerade zero and 1oz of formula. If he does not tolerate that then we have to do a half/half mixture of pedialyte and powerade zero for his night feed. If he does tolerate that, then we can try his regular night feed. I have to call back at 8 in the morning to let them know how it went. If he continues to vomit, they want to do some lab work. Keep praying......
**********************************************************************************

Yesterday's upper GI went well, but Layne woke up with fever and coughing, ugh. So radiology sent us over to the ER for Layne to be checked out. He has an URI. So looks like the surgery will be delayed some.

Layne's vomiting problem has only gotten worse. In the past 24hrs he has vomited 5 times. At 4 this morning his vomit was the color of grass, so I'm guessing he vomited bile. Which I hear isn't the best?!? He has lost about 10ozs in the past few days. This is very discouraging as we just want him to be as healthy as he can, and of course to continue to gain weight.

I have spoke with his GI nurse and I should be getting a call from the doctor very soon. I don't have any idea what is going to happen yet but I think Layne is a little dehydrated so that's never good. I did get him to drink 3oz of water by mouth and we are holding off on formula at this point.

Please pray that nothing is seriously wrong. I feel like it's a never ending circle of sadness and heartache for us. I don't understand why poor little Layne has to endure so much in his tiny life.
Thanks for checking in and keeping up with us, we appreciate it very much.

Quick Post

We are getting ready to go to Dallas for Layne's upper GI in the morning! I just found out about it about 2 hrs ago!

Reflux

I talked to Layne's pediatrician last night and he believes Layne is dealing with reflux again:( He had it pretty bad in the past too. Dr. Morris is putting him back on Zantac so I hope it helps. Poor little guy has already vomited twice today:(

Some Pictures and an Update

*UPDATE* Since I posted that Layne has vomited twice:( I don't understand this!



I just wanted to share some cute photos of Layne and give everyone a little update! Layne has still been having some troubles with vomiting. We haven't quite figured it out yet. It seems like every time we increase his feeds he vomits?!? Today I went back down to the original amount and so far no vomiting. This is disappointing because we want him to keep growing! I have e-mailed the dietitian and am waiting on a response on her ideas.

And now enjoy these cute pictures!

G-tube Surgery Scheduled!

Layne will be having his G-tube surgery on the 20th. His pre-op and hopefully the upper GI will be on the 15th. That is if Layne can stay well until then....my husband has come down with a cold, ugh. I have been lysoling like crazy around here! If Layne gets sick that means no surgery for another 6 weeks. Please pray that he stays well!!

Layne has been seizure free for 2 months now!!! YAY! I'm posting a video of him blowing raspberries! He is so cute! Since he has been seizure free and gaining weight, he seems so much stronger. His head control is much better and he doesn't feel sooooo floppy when you hold him. He makes lots of different sounds too! He still cries ALOT but maybe not quite as much as he used to. Hope you enjoy the video, you will probably have to pause the music, although I love the new song I put on here!!!

GI Appt

Yesterday we had Layne's appointment with the GI doctor, Dr. Semrin(Dr. Said's husband). He was very nice and explained how everything was going to work very well. He is located in Plano but said because it easier for us to drive to Dallas he would go there for us! So Layne will be having surgery to put the G-tube in the week of the 20th, not sure on the actual day yet. They will have to check and make sure that Layne's organs are all in the right place and if they are Dr. Semrin will be able to do the procedure himself through Layne's mouth. If something is out of place then the surgeon will have to take over. Layne will be under general anesthesia(sp) so that is always scary. Layne will need to be in recovery for at least 48 hours to make sure he finishes his antibiotics and that he is tolerating feeds well!

Layne and Daddy in the waiting room! Playing with his monkey!

Layne weighed 16lbs 15ozs today!!! I cannot believe it! Tomorrow he will be 19 months old, crazy!

Wow...What a Weekend!

We have had one crazy weekend! It started off with the Stroll for Epilepsy at the Dallas Zoo! We had to get up at 4:45am to get ready...that was super hard since we don't get much sleep as it is! We headed out of here at about 5:45 and Layne screamed the entire 2hr trip...yay...not! Then once we got there he was still so fussy and crying that we couldn't even push him in his stroller! We still had fun though and the animals at the zoo were alot more active than last time! Layne's doctor and dietitian were there too as well as the people who do his EEG's!! Here are a few pics from the walk!

Layne with Dr. Said!

After the walk we thought we would invite our families to come eat with us at Chili's. When we got there Layne kept fussing and then starting acting like he was trying to have a BM. He went and we went out to the car to change him. As soon as we got back in he started pushing super hard and then he vomited on me. So back out to the car we went and he continued to push very hard trying to have another BM. We eventually got our food to go since Layne was having such a bad time. So needless to say that little idea was a disaster!

When we got home Layne had another BM, this one with no trouble and when I changed him I noticed he had jelly like blood in his diaper. So I texted his pediatrician-yes I said texted, he is wonderful! He was 6hrs away so he decided we needed to take Layne to the ER. So back to Dallas we went. When we got there they suspected he had intussusception(I'm sure that's misspelled!). But after all night in the ER and some testing discovered that wasn't it. They said it could have been anything from NG tube irritation to the constipation he often has. I'm so glad it wasn't what they thought because that can be very serious and if not treated will result in death.

So what a fun weekend huh? When we got home Sunday afternoon, Mimi and Aunt Bonny were there to watch Layne so we could catch up on sleep, since we had been up for over 30hrs straight. We got a good 4 hr nap and so did Layne!!! He ended up going to bed at his normal time too and slept pretty well last night, only waking about 2 times!

This sucks-yeah I said it-it just plain sucks. Why?-yes I finally ask why- does Layne have to have all these big problems and then the little ones on top of that? This weekend was the first time we have ever had the points, stares, and whispers and it was heartbreaking. I guess people were looking because he is in his special needs stroller and has the NG tube. One little girl told her mother-"mommy that baby looks sick". I cry as I type that. The mother instantly shushed her. Then we had people who would tap there mom, or friend and point and stare and then whisper. Wonder what they say? Who knows.

After such a rough weekend I sure hope the rest of the week is better! Layne goes to see the GI doctor tomorrow, so I will update how that goes! Oh and by the way he is 16lbs 13.5ozs!

Welcome to Holland

"Welcome To Holland"

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experienceto understand it, to imagine how it would feel.

It's like this . . .When you're going to have a baby, it's like planning a wonderful vacation trip to Italy. You get a bunch of guide books and make all your plans. The Colosseum . . . the Michelangelo David . . . the gondolas of Venice. You get a book of handy phrases and learn how to say a few words in Italian.

It's all very exciting"."Finally, the time comes for your trip. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says: "Welcome to Holland.""Holland?!" you say. "Holland? I signed up for Italy.

All my life I've dreamed of going to Italy!"I'm sorry," she says. "There's been a change and we've landed in Holland."But I don't know anything about Holland! I never thought of going to Holland! "I have no idea what you do in Holland!"What's important is that they haven't taken you to a terrible, ugly place, full of famine, pestilence and disease. It's just a different place.

So you have to go out and buy a whole new set of guide books . . . you have to learn a whole new language . . . and you'll meet a whole new bunch of people you would never have met otherwise.

Holland. It's slower paced than Italy, less flashy than Italy . . . but after you've been there for a while, and you've had a chance to catch your breath, you look around and begin to discover that Holland has windmills and Holland has tulips - Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy . . . and they're all bragging about what a great time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I planned." And the pain of that will never, ever, ever, ever go away. And you must accept that pain - because the loss of that dream is a very, very significant loss.

But . . . if you spend your time mourning the fact that you never got to go to Italy, you may never be available to enjoy the very lovely, very special things about Holland."Welcome to Holland!"

by Emily Perly Kingsley

Vision Therapy

Layne started vision therapy on Monday and from that I learned that Layne likes pom poms! So you may think this looks crazy but Layne seems to like it!There are all kinds or things I found to put on there! Some ribbon, my old pom pom from high school, tissue paper and a paper towel! This seems to keep Layne entertained for a few minutes!

The guy from Freedom2Go came today to get Layne all setup to get his own stroller and he also took a look at the van to show us how to tie it down in there. We cannot afford to get actual tie downs at this point so he showed us how to us the tie down hooks that the seats of the van go in!

Layne currently weighs 16lbs 8ozs! So his increase in food is helping!!!!