Erin’s Journal

We had a good Easter. Eli is doing really well, we were able to spend time with family, both Abrams and mine, so it was good to be with both. Eli ate well, and is still doing great with his new way of eating. Chew,chew,chew, take a drink is the saying around here LOL. He wasnt much into the Easter egg hunt. But, tried munching a few candies and did suprisingly well. He pooped on his DAD… HaHa, laughing my butt off! So, that was fun. You guys can relate. Hope all of your little refluxers are well, and you had a wonderful Easter as we did.

I justed wanted to add my Thanks to everyone who has been so supportive to me and my family through this, I dont know what I would have done without you guys, my family friends, my friends that I have met online and our supportive family. You guys have been so awesome to come help and give loving advice and comfort to me and Abram when we needed it most and especially now that we are rounding the bend and the worst is over it seems. I am so thankful to my Lord for him bringing all of you into my life and sticking by us even when we couldnt be around because of our situation.

You sent encouraging letters, cards, words, phone calls, help with babysitting and most of you have witnessed the puking and have even been puked on LOL (you guys know who you are). I have a good feeling after this last dilation that Eli is on his way, he is eating, happy, playing, talking and all of us here at home are finally resting easier, especially the other lights of my life Sabin and Andrew. You guys have helped them through this more than you will ever know with babysitting and making them feel special and important at this time, and I cant thank you enough.

It is with tear filled eyes and a big grin that I think of you and all you have done for me and I thank the Lord each day for your love. We have had negativity happen and people and things try to drag us down and you have stood by us and lifted us up in prayer and love and friendship. Thank you to all of you. Some of you I dont even know come to this site and are praying for Eli. I have been told about you and this is to you too especially. Mickey you are one of the people and I thank you for you and all your church friends and who knows who else who you have praying for Eli. Eli has touched so many lives through his illness and I know it is part of Gods Eternal plan to draw people closer to Him during this time. It has been a phenominal spiritual growth time for all of us.

 We will never forget and please take time to look at Elis smiling face. In the pic a few down, see how happy his eyes look? If you look at the pic above it at Christmas before his surgery you can see the tiredness in his eyes. But, in the pic below just taken a few days ago after his recovery you can see how alive he is again, how he lights up mine, Abrams, Sabin and Andrews lives!

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Eli ate his first piece of pizza in 6 weeks last night. He was so excited and ate so carefully the way he has been learning. He was so full afterwards! It was funny. Abram and I were so proud!We just home from an Easter Egg hunt and Sabin, Andrew, and Eli had a blast and got way too much candy. Eli is a sticky mess and going to bed. The church we went to for the hunt knows Eli and our family really well so they were so glad to see him and see that he was doing well. I was glad that they got to see him feeling good, they have all been praying for him and have known all the boys all their lives. Happy Easter everyone!!!

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 I dont know how to reply to all of your comments but I love getting them, they are so fun!We went to UCLA as you know, and he is releasing us back to the GI but called the GI while there and came back in the room and said the GI will not be able to take over treatments regarding the surgery, that he will still be performing anything that needs to be performed. Hey, I will take it! I told him no offense I am just sick of this drive and ready to be done with driving back and forth constantly! For those of you who have to drive long distances like us, I feel your pain, and it really is right on your butt from sitting in the car so much. And, hopefully we wont have to see him again ever. Eli ate at Dennys! He had chicken nuggets for the first time since surgery, of course, they were in tiny pieces and he did have a bit of a panic moment LOL but he took a drink like we have been practicing and it went down. He is beginning to relearn to eat a new way which they told us he would have to change the way he eats and I have seen this 2 year old figure this out over time. He is such a strong person, I admire him so much. Oh, and I got him some language development cards that he loves, many children that suffer from GERD are behind in speech because of many factors they are dealing with, Eli seems to be doing well and his speech is taking off since the surgery so now he has “school” time with Mommy like both his brothers do and he thinks he is so big and special. Things seem to be finally going back to normal and calming down, I have heard 6 weeks is about right with this surgery to start coming out of the fog and misery and boy is it true. So, for those of you who are reading this and are low in spirit with your own battle, It will get better. And, as always, email me if you ever need to talk, or vent, or cry. Thanks again for taking the time to share Elis story with us.

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 Hi Guys, the GI was very supportive, he is upset with the surgeon. We go see the surgeon tomorrow and GI wants us to have him give the OK to the childrens hospital taking over treatment. He also showed us the surgery report and Elis duodom was attached to his liver and they had to seperate it! The surgeon didnt tell us that. Anyhow, he thinks Eli may need a few more dialations. And, we have to take him to ER next time he gets weird and has one of those siezure episodes after eating so they can poke him again but other than that it sounded hopeful and encouraging… There is a plan, and Eli is doing well, he has been munching on french fries. Thanks to all who have been supportive and have been bugging me for updates, God bless! And, I will keep them coming!

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 Eli had lab work today, he goes to the GI on wednesday and UCLA again on thursday. He is still having difficulty eating but managed to eat some french fries today not so good with taco meat from taco bell though. Anyhow, he is running around happy and hanging in there! He is such a busy happy little boy.

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 I know I am typing again on the same day but I have to tell this to friends and family and dont want to type it over and over. OK, so I email my surgeon because I have already talked to the nurse and she said not to worry about the dumping episodes. So, I tell the surgeon that he has been doing really great but has 3 episodes since the surgery where he is lethargic, naseated, weak, his eyes roll, and he looks pale and retches from the nausea after eating. He emails me back and says that it isnt related to the surgery or reflux, that he will see us on thursday for our post op and then he is refering us back to the Valley Childrens. Oh, and it doesnt warrent going to the ER and I can give him mylicon drops if uncomfortable. !!!???!!! What??? Hello, this guy does these surgeries all the time, he knows what dumping syndrome is, he knows it goes along with stomach surgeries, there is no way he doesnt know! So, I think he just doesnt want to deal with it, that is why he is doing the post op and sending us back. So, I call valley childrens and tell them what happened and what my surgeon said. My GI is angry and knows what I know, that the surgeon knows it is dumping syndrome, he wanted me to insist on being seen by the surgeon because he said the surgeon is responsible for 3 months and this is something caused by the surgery. Well, I tell my GI that he is sending us back to them after the post op and that he told me these symptoms have nothing to do with the surgery (ya right). So, my GI said surgeons just care about cutting up people so he said bring him in and we will help you, that it is serious and needs to be dealt with. We have lab work done monday morning and then they are going to squeeze us in next week sometime. Meanwhile Eli is running around playing and eating everything practicallly just fine. He says owie a little and yawns after eating but I would too after last night and that is how he has been feeling. I thought this was going to set him back to not being able to eat but he seems fine so is it a mild case or something? I dont know. I just know it has happened 3 times and the rest of the time he is fine. I have read alot about dumping before the surgery so I would know but I dont actually know the real people stuff about it. Like, how often, is it normal to just happen a few times, can it get worse… such and such. Sorry for going on!! Now, I feel silly causing this uproar when he is running around fine now and eating.

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For those of you who read this and I havent told you about this yet I am sorry. Its just to hard to call everyone with depressing news. He is having dumping syndrome I am sure. He has all the symptoms of it. He goes in next thursday, the 24? so we will be talking to them. He has had this a few times and I think to a smaller extent each time because he yawns (I know that sounds weird but trust me). Last night he had a bad episode of dizziness, weakness, limpness, stomach pain, pale, sweaty, and some explosive diarrhea. From what I have read this from low blood pressure and sugar from dumping syndrome. This was what was happening when Abrams family was out last time and now it is back and he sees it. I was hoping it was gone since the dilation but it isnt. Just because he hadnt done that since. So, I thought it must not be dumping. But, I think the retching maybe brought on by it too because it makes you nauseated. And, last night, he was trying to vomit and he probably tried for 2 and half hours till he fell asleep from exhaustion. I really hate sending bad news, I am in tears right now.

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Well, I believe Eli is finally on the road to recovery. And, Abram and I are starting to figure out how his new little insides work. The retching has pretty much been a no show since Abram and I figured out his secret. I do think it would have been impossible without the dialation though. It made a difference for him to be able to get the food through the wrap. So, here is my theory. The drs didnt think so but it must be true because it is working so far.

OK, Eli has a knot in his esophagus (fundo) and when the food passes through he freaks and tries to vomit up the knot (fundo). Well, it isnt going anywhere, it cant. And, it was happening after about 5 or 6 bites, so first I think he was getting full too soon. So, when he started to get the look of panic we would tell him its OK and its supposed to feel like that. We tell him to take a drink to wash his bite down and he is catching on and has been eating everything we have for 2 days. I believe it feels weird when the food goes through the wrap and Eli is now starting to get used to it. I dont think there is anything wrong with the wrap or anything. I just think Eli is used to vomiting and when he feels something weird it is his automatic reaction, and when he is overly full.

 Well, he is getting over that. He is relearning to eat with his new shape in there and it is finally paying off. Lets just pray I dont eat my words and Eli continues on as he has. I also think his little tummy is starting to stretch out again after the surgery. We were told his tummy would be alot smaller and that it would eventually get back to regular size. Well, he is handling more and more food each day. This is a kid who used to out eat his 7 year old brother so he has a ways to go. And, doesnt like to stop. He still tries to eat like he used to. But, he is catching on and listening to mom and dad when we tell him to take a drink or slow down. He just had bowl of real cereal for breakfast. And, last night he had stuffing and green beans. yea!

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 Today is Andrews Birthday, he is six!! Wew-hew!
Eli had some retching going on at Grandmas house yesterday but today he had french toast sticks, french fries, cheese puffs, and cake and IceCream for “Nandys” birthday with no retching so wew-hew for Eli and his big brother Andrew today!!

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 Eli had a good day today too. He had oatmeal, mac n cheese, and french toast sticks for dinner. Oh, and he did munch on a scottys donut till we were able to get it away from him, oopsy! So, I guess as long as I dont type it he is doing well eating wise, so I dont bore anyone to death with Elis menu. Only Abram and I probably want to hear that. His fever is gone and he played in the pool today and screamed bloody murder when we made him get out. So, he is feeling really good. Which means his Dad and I are too.

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