Dr. said he was doing good. He lost 3 pounds so he is changing his formula. He is getting 93% of what he needed with the old formula but Dr. doesn't think his body is absorbing the nutrition. We are giving him enough so didn't increase the new formula. He is very tall, almost off the top of the charge (maybe 98%). But his age and height put his weight almost off the chart on the low end. The Dr. didn't like that. He has been constipated so we have to use the miralax for a week and then as needed. He said to give him some Nexium for the next week since the constipation could cause him to reflux. Maybe that's why he stopped drinking his formula lately. He is going to get PediaSure Peptide. It is formulated a little differently to break up easier. So, you know, "We'll see how that goes". We talked to him about changing his feeding time, which we do at home if needed. But they at him being fed at 10 a and 2 p when he starts Kindergarten. So we had them change that to around 11 a (lunch time for the kindergarteners). The nurse leaves at 12 p and we can't trust he will get fed. We will just give him a bolus in the morning and when he gets home. Well, that's all for now. Everything else is going well. Send prayers that Kindergarten goes well.

I haven't posted in quite a while. Ethan enjoyed preschool and had a little graduation ceremony in May. He has had a great summer. We haven't done all we wanted to as I have had vestibular neuronitis. It starts out with an intense vertigo; when that stops your balance is affected and everything appears to shake (because there is some nystagmus in the eyes), you feel like a magnet is pulling you in different directions and there is a floaty feeling in your head. It is very hard to explain. But, after 4 months of it, I am beginning to see some improvement and hope that by Ethan's 6th birthday in October, I will be able to enjoy a lot more. I have been going to work, but it has not been easy. Anyway, Ethan is getting ready to start kindergarten next week. He's doing wonderfully except he is still not eating. Every time we think we are making progress, he backslides. Hopefully, he will drink his formula at lunch. We will see how that goes. And we have worked and worked on getting him to not say "booty butt". He just loves this phrase and we have worked hard on him not saying it. He gets stuck on it every now and then and it is a hard habit to break. We'll see how that goes. He has grown tall this summer and looks so skinny and boney (not sure if that is a word or even how you spell it, but there it is). He has lost a couple of pounds. He goes back to the GI doctor next week and he may increase his formula. We will see how that goes. Over all, he is wonderful; a complete joy. He loves going outside, even on the 98 degree days; the heat just doesn't bother him. He got a nice little farmer's tan this summer. He still loves spongebob (spongey, as he calls him) but has added some new things to his tv viewing enjoyment (paw patrol, ninja turtles and such). He loves fighting with his sister who is now 8 years old. He is in there putting his pants on with his legs in the same leg so he looks like a mermaid. We have a lot to look forward to this year. He lost his first two teeth this past spring. That was thrilling for him. He is brushing his teeth more on his own, so that is a big hurdle he's almost conquered. He's looking so forward to kindergarten and all that he will do and learn. We are just loving watching him loving life and being a kid.

Ethan is doing very well. We just celebrated his
5th birthday! Wow! Time is going by so fast. Ethan had the croup in August and caught a cold in September. He got sick again in October and missed some days of preschool. We believe he had RSV. The doctor didn't test him but he had a fever, stuffy nose, chest congestion and generally just didn't feel good. Taking lots of naps and all (normally doesn't take naps). My 2 year old niece had the same symptoms and when her doctor tested her, the RSV came back positive. We had already increased his breathing treatments and that's usually what we have to do anyway. His cough is hanging on but the fever is gone and his head congestion is better. It always takes a long time to get completely over the RSV. :) Ethan is making more progress on his eating. He has been eating a 4 oz cup of yogurt or jello at therapy twice a week. He won't do it in front of everybody yet; only his therapists. But since it is so new to him we didn't think he would. Hopefully it will be an everyday thing soon. He is doing great in preschool. He is coloring better (not staying in the lines but not just scribbling anymore). He loves going and keeps asking to go to school when he has to stay out. He is going to be a teenage mutant ninja turtle (Leonardo) for Halloween. He loves them. He has grown so much. He is 45 inches tall and weighs 45 pounds now.

Ethan is doing great. After 2 1/2 weeks at preschool he came down with the croup. He woke up barking Friday morning. The doctor gave him antibiotics for a sinus infection and prednisone for the croup inflammation. They took an x-ray to make sure he didn't aspirate. He still has a big space under his right lung. He seemed better Saturday but is coughing more today and his nose is stuffy. He had a great therapy Thursday. He ate 12 baby spoons of apple sauce. It's not that much, but it's a big step for him. They didn't find any signs of aspiration. Ethan's sister, Christa is sick, too. She has a stuffy nose but neither of them have a fever. We'll see how this week goes.

Ethan's first week of pre-k went great. Ethan was nervous on the first day and even cried a little Tuesday morning. But by the end of the week; all he could talk about was going on the playground. Thursday and Friday it rained cats and dogs (it is continuing today) and they didn't get to go on the playground. Ethan was disappointed about that but had a great week anyway. He even drank a cup of whole milk one day. Yay, Ethan. He just had to have a straw and his teacher was kind enough to round one up for him. His teacher said she was surprised at how many letters and numbers he knew. We'll see how next week goes.

:p Ethan is 4 years 9 months old has had a wonderful summer. We went to our family reunion over the 4th of July and he enjoyed playing with all the other kids. He even rode his big wheel by himself for the first time. We went to Panama City Beach this past week. He was scared of the water at first, but once he got in, you couldn't keep him out of it. He kept asking me to take him out in the water and float around with him. I did and we both enjoyed it so much. He just kept telling me he loved me while we were floating around. Ethan's therapy is going well. The last two weeks they have gotten him to eat a little bit. Last week he bit off a little bite of a Teddy Graham, chewed it up and swallowed it. It was hard for him; he gagged some but worked his way through it. This week he licked a few pieces of rice off a spoon and ate that; Thursday night we got him to try a little piece of a French fry. It's a very small amount, but such big progress for him. He still weighs about 40 pounds and has gotten so tall. He reaches his sister's chin and she is 7 years old (almost 8). The doctor wanted him to gain some weight so they increased his overnight feed to 60 mils an hour and we are trying to increase his bolus feeds during the day to 180 (right now his tolerating 160 mils). He still spits up and vomits if he gets a high volume at one time. The doctor wanted to him to starting drinking that PediaSure juice that has 120 calories in each juice box, but he does not like it at all. So we have been putting that in his tube. He loves chocolate milk and YooHoo boxes and most anything else to drink but he won't drink his formula. We have gotten him to drink sips of it but not enough to make any difference in his nutrition. He doesn't like the vitamin taste. We are a little nervous (more excited than nervous though. He starts Pre-k on Monday. He will be going half days. He still has trouble with his fine motor skills (holding a pencil, crayon, working with scissors) and hopefully being around the other kids will help him a lot. He doesn't want to do the finger paint, but I explained that he can wash his hands right when he is finished and he said ok. We'll see how it goes. Of course I will be taking lots of pictures. That's about all that's going on with Mr. Ethan right now. He has hit the question phase and asks me 101 questions every day. I get impatient sometimes but I know that is how he will learn. He wants to know: why is the sky blue?, why do we put clothes in the washing machine?, why do people go to Walmart?, Why do we cut the grass?, why do we cut our hair? and so many others. It's wonderful. It means he is thinking and wants to learn. Will post later how his pre-k is going.

Ethan is doing great. He saw his surgeon yesterday. She did an xray for which he was scared at first, but willingly got it done when he found out he was getting a balloon. The doctor said his diaphragm was still high on the right side and that she thought his lung would have grown more by now. But that it could still grow up until 7 or 8 years old. It looked like his liver may be pushing up on the patch but nothing looked really unusual or out of the ordinary for him. She will see him next year and see what's happened then. He is doing great and is well on the way to being potty trained. He asked to go to the potty all day yesterday and woke up dry several mornings this week. We also found him a preschool that will take him with the g-tube. Very exciting. He is looking forward to it already and wants a book bag and school stuff. He will start in August. He loves his tool set he got for Christmas and anything with wheels is still high on the best loved toys list. We are looking forward to a great summer.:D

Ethan went to the eye doctor again Friday. His eye doctor referred him to another one to check the cyst on his eye. They said it could be from a stitch that was in his eye after his surgery in May or it could be because the muscle was pulled back doesn't allow the fluid to drain, but go under his eye covering instead. He said because it doesn't seem to really bother him and he would have to sedate him to drain it, to just leave it alone for now. If it gets bigger and unsightly or causes him iritation, we could do something about it then. So we'll wait and see how it goes. We finally got his therapies all approved. We got the notification this week. We are very thankful for that. Ethan bent his new glasses already. My husband took him and got them adjusted. Other than that he is doing great and loving the summer. He got in the pool this weekend and didn't want to get out. Sweet boy.

Ethan is doing great. He had to go to the eye doctor today because of a cyst on his eye. It looks like a little bubble on his eyeball. The doctor said it was caused by allergies and rubbing the eye a lot. He gave him some drops to shrink it. He was going to try to drain it but Ethan wouldn't be still enough. He doesn't like anything touching his face. So we'll see if the drops do the trick. We are having trouble with the insurance again. The sent us a letter saying he used too many OT visits, but we knew he hadn't. We called the insurance company and they said he had plenty of visits left (52 visits for the rest of the year) and didn't know why the letter was sent. The therapy center keeps calling the insurance company and they won't call them back so they can straighten it out. He is getting speech and PT but he does a lot better in speech when he has the OT session right before the speech session. We'll see what happens. We had to order Ethan some new glasses. His just got too small and were hurting his ears. Can't wait to get them.

:cool:Ethan went back to the eye doctor for a check up (he had his eye surgery on 5/3/12) and it went great. They said his eyes were straight as an arrow. He will still need his glasses as he is farsighted, but he doesn't seem to mind wearing them now. Now that his eyes aren't trying to correct his vision themselves, he will go get his glasses and put them on. We haven't had to use the strap to keep them on. Well, we still do outside so he won't lose them if they accidentally fall off. But it was good news. All is going well. He got some foot orthotics this week, too. Lots going on. The look like plastic little half shoes that he wears inside his regular shoes. They keep his ankles stable and help his balance. He doesn't fall nearly as much when he is wearing them. Hopefully they will help strengthen his legs and ankles too. We also got him to bite some french fries. He spit the pieces back out immediately but he did bite them with his front teeth about ten times. Christa finally lost one of her teeth this week, too. She was very excited. Ethan was amazed at that.

We had a great day. Went to Sonny's to eat some barbecue and celebrate my Daddy's 71st birthday (it's actually tomorrow but we usually end up combining Mother's Day and his birthday dinner). It was fun. Ethan and Christa each gave me a card that they wrote their names on (Ethan had some help from Mike) and they gave me one of those flower vases that you press the button and the flower opens up. When Ethan gave me his card, he sang, "letter, letter, letter" and turned it from side to side. He's in there singing it now. Very cute. Pray everyone else had a good Mother's day. Celebrating Mother's and Mother figures everywhere. Thank you God for the years I had my wonderful Mother and for letting me be a Mother.

;)Ethan is doing great. It has been a week and two days since his eye surgery. They are still red but his they are in the middle like they are supposed to be. He is still squinting a lot but doesn't try to rub them. He is loving the cooler weather we have had. Today is cloudy and not cold but cooler. He and Christa are outside with Daddy right now. We all worked in the garden some this morning. They love "helping" to hoe and weed it. I saved a little patch of weeds for them to work on (no real vegetable plants in it). Mother's Day is going to be hard for many who have lost their child and to those who are still in the hospital. Sending special prayers for all those families. Couldn't stop thinking about little Isaiah these last two days. Hugging Ethan a little bit closer.

;)Ethan has been doing very well. He's wanting to stay outside since the warm weather is here. He's scraping his knees just like any little boy (or girl). He's going for his eye surgery Thursday; we are a little nervous but expecting things to go well. Christa is on her last month of kindergarten. She had field day today and rode a pony; very exciting for her. And they are going on a field trip Thursday to the strawberry patch where they will pick a basket of strawberries and have some strawberry ice cream. Her little graduation will be May 25. Looking forward to that. Ethan says he wants to go to school. In another year and a half he will start pre-school. I cannot believe it. He has finally learned his colors. He identified them all at therapy yesterday and has pointed them out around the house. That was very exciting. We are teaching him to write his name. It's progressing very slowly but it is wonderful to see him want to learn it. He is also counting to 10. Wow! I know. Will update again later. Praying for all the cherubs.

:DHappy Easter. Not much happening lately. Ethan is doing well and looking forward to a fun filled Easter weekend. We are going on our annual fishing trip this weekend. They will have an Easter egg hunt Saturday at the park. We are looking forward to that and some much needed R&R for everybody. Ethan sipped some broth from a spoon yesterday evening during supper. Very excited about that. It's still liquid but he said it was good. He also sipped milk from a spoon and liked it. There were some bits of cereal in it that surprised him. He hasn't wanted to try anything today. He played in his apple sauce at therapy; lots of fun and using his fingers and hands to feel it. His speech is getting better and better. Just since Christmas he is talking all the time instead of babbling; it is not always clear but it is actual sentences and words. That's about it. Thank you, God. For sending your Son to die on the cross and rise again. Happy Easter.

:cool:Ethan is sitting here trying to sing "Twinkle Twinkle Little Star". He had a fantastic appointment with his surgeon yesterday (Friday 3/2). His right lung has pretty much filled in his right chest. His diaphragm was still a little up but so much better than last year. A big bulge that was concerning was gone. Praise the Lord that his lung is growing. His surgeon explained to a resident that he had the worst Right CDH and that he was wasn't eligible for ECMO because of his size at 4 lbs 2 oz. That he is a miracle. She was very surprised at his size and although she knew, she asked again how old he was. Then commented on how tall he is. Yay Ethan. She said her main focus now is for him to learn to eat. She noticed some prematurity issues still lingering (speech) but nothing time won't cure. He still has some weakness after all he has been through but with therapy and his own active lifestyle, he should be able to work through that. His reflux is improving. He is going May 3rd to have his eye surgery to correct the strabismus. Loving all this good news and pushing ahead with therapy.