A new look for Ethan

For the past 2 days I have been going through blog layouts for the cutest one. Since Ethan is turning 1 he needs a new look. I think this blog has had about 20 different layouts in the last 2 days & I finally settled on this one. Hope everyone enjoys the layout.

Ethan is doing great today. He's been hanging out with me all morning while daddy works on the deck that he should have finished last weekend. This morning Ethan woke up with the sound of Matt's alarm. He was fussing a little bit & after Matt passed his room it sounded like Ethan called out "dada" but neither of us are real sure that's what we heard as he didn't do it again. It wasn't real clear as to if that's what he actually. At least when he said "kitty" it was very clear. Plus he would say it as he was going after the "kitty". He just loves to torture the poor cats. When he comes anywhere near them they run for cover. Peek-a-boo usually just takes higher ground b/c for some reason she refuses to jump the babygate between the dining room/living room. She just squirms through the one to the kitchen. He gets a little frustrated that they won't let him "pet" them. We keep explaining to him that they don't like to have their fur pulled that it hurts. We are working on gentle he just doesn't get it. Oh well he will someday. We just have to keep showing him.

Ethan's PKU

Deb contacted us & said that she recalculated Ethans protein intake. He took in 1300mg/day. At his last test he was taking in 1100mg/day. The fact that he is taking in more & his levels are lower in a good sign. So now what she wants us to do is to add 1/4 cup of powdered milk to his food each day. This will give him an additional 300 mg of protein in his diet. We started today, I have just been adding it to his formula. Since he takes 5oz of formula with his breakfast & lunch it works out great. 1 scoop of powdered milk to every 2 scoops of formula. He should get 3.5 scoops a day. He gets 3 sippy cups of formula each day. The rest of the day he drinks juice if he wants it. We can also just stir the powder in with his other food. We are no longer buying baby food as he's really to a point where he can eat more solid food. Until he gets all his teeth it just has to be something soft. The only baby food we are still buying is meat. It's a little easier to measure how much meat he takes that way for his tests. I'm hoping that we are going to continually see his levels get lower now that he is older. This would be great so we won't have to continue to keep track of what he is eating.

There is an update on Kayleigh. Her brain has not continued to swell it has stayed where it is at. The dr's are taking her off the med for her hypertension to switch it. She has to be weaned off. So it is looking like she will be in the NICU for another 3 weeks. Hopefully she will be home before she turns 1.

I will be getting the invitations out for Ethan's party soon. All I can say about them is they are really cute. I don't want to give away what I did it's more fun to surprise people.

Ethan is becoming quite a handful now. He is in constant motion all the time. When he's awake he is continuously on the go. He covers all areas of the room. I'm lucky if I can wrangle him long enough for a kiss & hug. He doesn't like to be held for more than 30 secs. He is also getting really good at walking while holding onto the couch or chair. He doesn't want to hold my hands & try to walk he wants to do it on his own. It won't be long now before he is completely walking by himself without the need of assistance from the furniture.

Test results back

Ethan's test results came back today from his 10 day challenge. They are down from 4.1 to 2.65. Big difference. There was some confusion on the amt of protein that he took in during this challenge Deb (the dietician) is recalculating it & will let us know. Matt has some concerns that the levels were lower b/c he was tested 5hrs post eating instead of 4hrs & b/c I had given Ethan speghetti w/meat sauce instead of plain meat. When I picked that meal out Matt thought it would be ok but apparently he was told that it doesn't have a lot of phe in it. Even so I don't think that those small things would really make that big of a difference b/c Ethan is still eating a lot more than he was when we had him last tested. We will talk to Deb tomorrow to get it all cleared up. In the mean time we have continued straight into the 30 day challenge. Ethan will be tested again on the 20th of this month. He is eating a full jar of meat with his meals & I am giving him a bit more formula as well. This should naturally increase his phe intake. Deb recommended that we add a milk based powder to his formula or his food to help increase his phe intake. I am not comfortable doing that b/c the last time he had dairy his face broke out in a rash. We want to talk to his ped first before deciding that. I would rather wait til I see her for his 1 yr check up to start him on milk. Matt wanted to talk to her I don't think he has gotten ahold of her yet. He will be 1 in a few weeks I would like to wait til then to start him on dairy.

I have been busy planning his 1st b-day party. It's going to be pooh bear themed. Not my first choice but it'll still be cute. I have some really cute decorations that I can put around the house & on the deck. He's going to have a great party.

Some short videos

I moved my videos from my phone onto my computer & I thought it would be fun to share a couple videos of Ethan.

This first one was taken at the zoo. It was his first trip & he was about 2 mos old. The video was taken on my old phone. The shadowing on the sides is just the case getting in the way.

This next video I just took this morning. Ethan was playing in the living room. It was taken on my new phone so the quality is much better.

Happy 11 mos Ethan!!

Ethan is 11 mos old today!!! Since it was such a nice day out we decided to go out to the park. We packed some things to drink & some snacks for Ethan & headed out to Wildwood. We no more than got to the expressway, when my friend Andy called wanting to see if we wanted to meet them (Heather & her husband Scott, Andy & his fiancee Jimmy) at Maumee Bay. Since we ha just left we decided to meet them. They were grilling out. So Ethan, Matt, & I had a picnic with them. We got there before them so we went for a walk & sat out in the grass for a bit. It was Ethans first time getting to crawl around in the grass. He really wasn't sure what to make of it at first. He didn't seem to happy with the feel of grass in his hands or under his legs. For lunch/dinner he had some juice that we packed for him & 1/4 of a hotdog, it was his first hotdog. He liked it.

We are continuing to give Ethan meat every day. We figured that we would continue on to do a 30 day challenge from his 10 day challenge so his next blood draw will be the 20th of this month. So far he is still only getting 1100mg of protein per day. We already know that he can tolerate that so we are going to try to give him a little more food at each meal to see if he will be able to handle more than 11oomg of protein. The thing is a few months ago he was eating his meals closer together. But now he wants to eat more in one sitting & go longer in between his meals. So we can just go from giving him 1 jar of meat a day to 1 jar per meal. He eats 2 meals ( about 20oz of food) then he gets a 8 oz bottle at night. In a typical meal he gets 4oz Formula, 7oz vegetable, 7oz fruit, 1.25oz meat. He eats about 9:30 & 4:30. We'll just give him a jar of meat with these meals. We are also going to start to give him the Gerber Graduates Lil' Entrees to help get him more into wanting solid meals.

There is not really any new news on Kayleigh. The swelling in her brain has not gotten any worse. Her parents are really pushing to get her home as soon as they can. The Dr's want to change her hypertension medication before they release her . They will be doing that tomorrow. I do hope that she is able to go home & just be with her family so she can just go peacefully. She will not recover at this point. The swelling caused further deterioration of her brain & it will probably continue until her body just can't take any more. I hope that her parents are able to get her home before this gets any worse. They deserve it. 10 mos of waiting is long enough in my book.

Here are a few new photos of Ethan taken over the past few days.

Having some cookies for a snack

Trying to sneak a grab for Peek-a-boo

Just being plain out cute

At the park

Ethan & me at the park

Not happy to be getting kissed

Playing in the grass

Wristbands have been ordered

I ordered the wristbands today they should arrive in 7-14 days. I will have them to pass out to those who ordered them at Ethan's birthday party.

Ethan watched his 1st Kentucky Derby today. Well it was more like he slept through it. He crashed before they even got the horses loaded in the gates. Ethan & I picked Fersian Fire to win he had 7-2 odds. Matt picked Flying Private who has 43-1 odds. Who would have thought that Mind That Bird would win 50-1 odds! What a longshot. Whoever bet on that horse got a great payout. Next year I will try to start a small tradition w/Ethan. Let him bet a quarter on the horse of his choice. We all make our bets then watch the race. If none of us wins put it in the pot for next year. Something fun to do with him each year.

He was all over the house today. He is perpetual motion, he is always on the go now. At some point he was put in his playpen to give us a break in chasing him around. Some how, not really sure how, he managed to split his upper lip. I was watching him play with one of his stuffed animals, chewing it, then all of a sudden he just started screaming. Matt got up to get him & his lip was bleeding. We got it all cleaned up but it did swell a smidge. He must have just managed to bite his lip while he was playing with his stuffed animal. There is nothing hard in his playpen. He's ok though it will be healed by tomorrow. That's Ethan for ya.

Kayleigh is not doing well

There was an update on Kayleigh's blog last night & things have done south for her. Adam & Aimee received a call last night that Kayleigh's brain has started to swell & deteriorate. Fortunately her skull has not completely closed up yet so it can separate & allow for the swelling. The dr's have given her a few days to live. Adam & Aimee are completely lost with this news. Please keep them in your thoughts as they go through this. It has been a long battle for them & it is almost over. My heart breaks for this family. Kayleigh has beaten all the odds when they were against her. Unfortunately she is not going to beat these odds. She is a fighter & will continue to touch peoples lives even in death. Each day I remind Ethan just how much I love him & how much he means to me. I am so fortunate that he was healthy & strong when he was born. I am so thankful that he is home with us where he belongs & that I can wake up each day to his beautiful (handsome) face. Ethan is my little miracle.