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Saturday, May 30, 2009

Birthday suggestion

People have been asking us what they can get Ethan for his b-day. There isn't much for us to suggest b/c he doesn't really need anything. I just did however think of one thing, he has a college fund set up. Donations to his fund would help him in the future. I started this account when he came home from the hospital. He's already got more than I ever had growing up. So money for his college fund would be a good gift. I will put a "Donate" link in his side bar for anyone who would like to make a donation to his college fund.

Oh what a day yesterday was. Ethan was in some kind of a funky mood. One minute he would be completely content then all of a sudden he would screech at the top of his lungs in a temper tantrum then after a few mins that would pass & he would be all happy again. It didn't matter what he was doing or if he was already getting his way. I can't say that it was a bad day all together but at the end of the day I was done with the screeching. It was so shrill that it left the ears ringing. He was such a busy boy yesterday. So many things to play with so few hours in the day.


Today is going to be just as busy. A friend of Matt's is holding a b-day party for her daughter & Matt wants to go. Me I don't care either way. Right now Ethan is crawling all over me & watching his daddy mow the lawn from the front window. He loves to watch his daddy. He is all about his daddy at this time. When Matt is at work Ethan is all over the house saying "dadada" like he is looking for dadada. I have to keep reminding him that dadada is at work & will be home soon.

So far it is looking like Ethan will pretty much be able to stay on a fairly normal diet. In the last 2 days he has only taken in 20g - 30g of protein. We don't eat meats every day so neither does he. I think his next test will come back normal (well normal for Ethan) since he is not eating a ton of protein like he was for the last test that came back so high.  I think he is eating a normal amount of protein for a child his size & age. Somedays he can be very picky & will essentially turn his nose up at anything we try to give him & other days he eats everything we give him. We can't force him to eat more than he wants so if he doesn't take in the 50g a day then he doesn't. I'm not going to throw a fit over it. Since his levels were so high at the last test we are keeping an eye on his sleep patterns, & muscle tone. If he were to start sleeping more than he normally does and/or start to show signs of stiff muscles then it is a sign that his levels have been too high for too long & something would have to be done to get them down before damage is done. So far there is nothing noticeable so we aren't concerned at this time.

I still have to find some time to get out & shop for him. Obviously I don't want him to see what he's getting for his b-day. I should be able to get out this weekend as long as Matt doesn't get paged into work. We're getting him a little pool & stuffed Grover. It looks like we are expecting just about everyone at his party as no one has called to tell us they are not coming. Somehow though we have a feeling that there are a lot of people who aren't coming that just didn't bother to let us know. They'll just be missing out on a great time. We'll be going out this week to get the food for his party. We wanted to wait to the very last minute when we had a better idea of how many people we are cooking for.

Friday, May 29, 2009

Looking Back

I can't believe that in 4 days Ethan is going to be 1! I look back at our life before he was born & realize just how much he has changed it. All for the better of course. Before Ethan we were going out almost every weekend. Now we are happier to just stay home & be with him. We once had money now we don't. LOL. Not totally true we just would rather spend our money on him than on movies, games, ect. Ethan has made our lives feel more complete. He keeps us on our toes. He's on the move from the time he gets up in the morning to the time he goes to bed at night. We can't watch any of our favorite shows until he goes to bed. We spend each evening chasing him around the living room getting him out of the things he's not supposed to be getting into. His favorite no-no is the floor lamp. He likes to use it as support for standing. He also tries to pull the plug out of the outlet. There is not much time to relax until he's in bed for the night. Even though it sounds bad it's not. He is just fun to watch. Now that weather is starting to get warmer we can take walks after dinner. The last few evenings have been a bit rainy or chilly for him to be out. 


I look at Ethan now & it's so hard to believe that he is the same little 3 pounder that entered into this world a year ago. He has come a long way since his birth. There was concern in the beginning that he would be a few months behind but he showed the same determination he showed in the NICU & he caught up fairly quickly. Ethan may have had a bit of a rough start in life but it sure hasn't had any effect on him. He has gone from this little tiny red being to a beautiful little man. He's a very determined stubborn little man. He didn't stand a chance both of us are pretty stubborn. It's a good trait to have. He's very independent as well. He'll let us know if he wants us to play with him or if he wants to play on his own. He's very clear in what he wants.

Ethan is getting better at being able to stand on his own without any assistance. When he stands on his own he claps for himself. He knows he's doing something good. He took 2 steps last night on his own. He's figuring out his center of gravity. Not much longer & he will be running everywhere. 

It's been the most amazing journey watching him grow. I never thought that I could love anyone or anything as much as I love Ethan. Ethan's birth has brought so much happiness into our life. We both love him so much. It's amazing how much a baby can change the way you look a things.

Thursday, May 28, 2009

Important - Please read carefully

This is important information regarding Ethan's Hyperpe. As you read this please read it carefully.


We got the results back today from Ethan's blood work. His level went up to 8.65. He took in 2500g of phe per day. This is much more from the 1600 he took in the last time. His Tyrosene levels were normal at 104. We are going to have to change how we are feeding him. We have already stopped giving Ethan the powdered milk with each meal which is 300g less. What we are being told to do is Ethan can only have 50g of protein per day at this time. Each gram of protein that he takes in has 45g of phe in it. By taking in only 50g of protein he will only be taking in 2250g of phe in a day. We need to keep track of how much protein is in each thing that Ethan eats. In order to measure how much grams he is getting when we give him chicken, potatoes, ect things that don't come with the diet label on them we will need a gram scale to measure it all out. Matt & I will be getting one in the next few days. We will be creating a chart to help us calculate out how many grams of protein are in the liquids that he drinks. To give an example if we give him 7oz of pure formula that is 3.8g of protein. For every 5oz of his formula that he drinks he is getting 2.1g of protein. If he is getting regular cows milk we know that there is 8g of protein per every 240ml of milk. 8oz of cows milk is 8g of protein. 1 egg is 6g of protein. We have to watch labels now. Some fruits have 0g protein & those are ok for him. Ethan will be tested again in 3 weeks to see where his levels are at with the new diet. Deb will also be sending us a booklet that has protein counts for things that don't come with a diet label.

Here's what all this means. Ethan CANNOT have anything that we don't know about. If we are eating at some ones house we need to know how much protein is in the fruit, milk, ect before he eats it. For things like meats, potatoes, vegetables we will need our gram scale to determine that.

It needs to be understood that this diet has to be followed exactly. A prolonged amount of time with levels this high could lead to brain damage, or mental retardation. As his levels were only this high for no longer than 20 days there is no great concern there. 

Tuesday, May 26, 2009

My busy little man

Busy, busy, busy Ethan is. He is conatantly on the move. From 9 in the morning to 9 at night he is in perpetual motion. It doesn't matter how tired he is he will continue to play, crawl, & get into things. I always wait for the moment that he will just fall down asleep in the middle of his busy play schedule but it never happens. I always put him down for a nap at the same time everyday. Whether he sleeps or not is up to him. Most of the time he will throw everything out of his crib first then play with the toys on the bars. I listen to him on the baby monitor & it always takes at least an hour for him to settle down. 


Now that he has started to say dada he says it all the time. In the morning when I go into his room while I'm picking out his clothes for the day he stands in his crib "babble babble babble dadadada babble babble dadadada. It's likes he's asking "Where is dada? When will he be home?" I always tell him dada's at work he'll be home soon enough. Right now he's a daddy's boy. He's all about his daddy.

Just to make mention of this again I had brought up in an earlier post a few suggestions for Ethan's birthday. He could use 18M clothes for the fall, little books (something he can't totally destroy), any kind of push toy to help him with his walking, toys to use outside. We are getting him a baby pool so he can cool off this summer.  There is no theme to his party. I'm keeping it very simple. 

We have not gotten the results of his labs yet on his hyperphe. We don't expect to hear anything until at least Thurs. It won't be surprising if the results are on the high side. We gave him more protein than he would normally get in a meal. He was getting the powdered milk with each meal & we had started mixing milk in with his formula. My goal is to have him off formula by his birthday. He is already at half & half. I think he's ready to move on to 3/4 milk 1/4 formula which I will be starting tomorrow.

Monday, May 25, 2009

He finally clapped

We both got to witness Ethan clapping for the first time today! We were sitting in the backyard playing in the grass when he just started to imitate Matt. We managed to catch a little bit of it on the camera. It's really cute. Now anytime we clap he follows suit. He was also standing all on his own too. I finally got to see him take an unassisted step yesterday. It's more like a half step but it's still a step.


Here is the video of Ethan clapping:



Sunday, May 24, 2009

I missed it!

Last night Matt was in the dining room with Ethan & Ethan was cruising around holding onto a plastic bin. All of a sudden Ethan let go of the bin & was standing on his own. Next thing Matt knows Ethan took his first unassisted step! I was in the living room so I missed it. I missed Ethan's first unassisted step! Matt was so happy that for a change he didn't miss a first. I have been trying to get him to do it again but he gives me this look that says "Fat chance mom. You missed it the first time." LOL. He likes to do things when we don't ask him to do it. I'll just have to wait for him to do it again. I knew it wouldn't be much longer before he tried to walk unassisted.

Friday, May 22, 2009

A fun day

Ethan was just so busy today. He played this morning in the dining room while I fixed his breakfast. Then he played for a bit in his playpen then we went out into the backyard to play some more. Finally after dinner he played some more. With all this playing he doesn't have much time for anything else. LOL. Busy, busy, busy. Ethan's days are filled with fun. His birthday is coming up soon meaning I will be doing something special for him but you'll have to wait & see what I'm going to do. It's a surprise.


Ethan is definately an active little boy. He is on the go at all times. He does not have the capability to stay in one place very long. Today while he was playing in the dining room & I took the curtain to the french doors away from him for the zillionith time he actually let go of the chair he was holding onto & stood on his own. Then he suddenly realized what he was doing & fell onto his butt. Once he's got the standing on his own mastered he'll get brave & start to take those first unassisted steps. We don't think it will be long now.

Wednesday, May 20, 2009

30 day challenge

Ethan is going today to get his labs done for his 30 day challenge. We should know sometime next week what the results are. Hopefully they will be as low as the last time. Right now Ethan is sleeping we'll be leaving in about a half hour to get the labs done. I will be so happy if we never have to do it again. He's been eating a lot more since his last test & we have been adding the powdered milk to his food with every meal so he has been taking in much more protein. I' don't know how much more at this time Deb will let us know sometime this week. Let's keep our fingers crossed that everything comes back normal.

Monday, May 18, 2009

Ethan said what?!

Ethan never ceases to amaze us. On Thurs. out of the blue he just started to say "dada". He was walking with the couch saying "dadadadada" over & over again. Now of course he says it almost all the time unless we ask him to say it. Then he just stares at us. Now if only he would say "mama" I'd be a happy camper. Ethan was so cute today. The replacement cable came in the mail for our mini-stepper. The original one snapped. As Matt was trying to take the broken one off & put the new one on Ethan was grabbing at the pliers & banging them on the foot pedals like he was being helpful. We got out his play tool bench so that he could work alongside his daddy.

We have started to mix milk into his formula. Right now it's half milk half formula. Towards the end of the week we'll probably make it 3/4 milk, 1/4 formula. Hopefully he will be completely off formula by his birthday. I have been putting a little milk in his oatmeal & eggs in the morning to help make the transition better. We have packed away all his bottles he doesn't even miss them. I don't even think that he notices that they disappeared.

I have been told that there have been some problems with leaving comments. There is nothing wrong with the link. It has to be people pop-up blockers on their computers. Please check to make sure that your computer will allow pop-ups from this web site. Matt & I have checked from both of our computers & we have no issues getting to the comment form. Also there was an earlier comment on a previous post so we do know that it's working.

We hear that people have been receiving Ethan's party invitation in the mail. I thought everyone would like them. Everything is all planned for Ethan's party let's just hope that the weather will be nice so that we can all be outside. There's so much more room in the backyard.

Friday, May 15, 2009

What is Ethan up to today

Ethan has been a busy boy these past couple days taking pictures. All these pictures were taken yesterday & today. They are just too cute to not post.



Ethan standing at the window


Ethan watches daddy cut the grass


What cha' doin mom?


It's all about me



Sleeping in daddy's lap



Taking a nap in his playpen

He sleeps so peacefully


Chewing my bracelet


Playing with my bracelet


Looking for the cat toys


Ethan thinks he's a dog


Just hanging out










Thursday, May 14, 2009

Not too much to report on Ethan. He's just been a busy bee. His days are filled with playing, eating, & sleeping. Right now he is all about getting into the cat toys. We can't tempt him with his own toys apparently the cat toys are just more fun to play with. He is walking all around now holding onto the furniture. He is getting more daring now & actually tries to stand on his own. He stands for about 10 secs before he falls onto the floor. Ethan is all about getting into anything that he can get into. The last few nights he has been all about the lamp in the living room. He won't leave it alone so he keeps ending up getting put into his playpen for a while. Sometimes we just gotta pen him up to get him away from the no-no's. He has started to eat eggs. I mixed a little of his formula into them today to help fluff them up. We ran out of milk last night or I would have used a little milk instead. I think the formula in the eggs didn't taste too good because he kept gagging as soon as the eggs were in his mouth. He does that is something doesn't taste good. Of course he also does this with all his meals. I think he doesn't chew his food before trying to swallow it then he gags. Well at least it forces him to chew his food up. We are giving him more adult food now. By the time he's 1 we will be introducing him to milk. We sort of already started that when we started putting powdered milk in his food. We just give him 1 scoop per meal. It equals out to 1/4 cup per day. We have been using the scooper that comes in his formla cans. we figured 3 scoops is 1/4 cup. Keep an eye out for his invitations they will be put in the mail anytime this week. Perhaps they may already be out. Who knows I'm not telling (wink, wink). Don't forget you can leave comments to the posts. Just click on the comments link at the end of the posts. It will bring up a separate window for you to leave your comments in. If you don't have a google acct you can always leave one anonymously. Ethan loves to hear what people think.


I took these pictures last weekend. He was looking so cute in his Hawiian outfit.


He loves the cat toys more than his own


Playing with the cat's toy



I took this video last weekend because, well, Ethan was just to cute to not to.

Tuesday, May 12, 2009

A moment of silence

As you read this post today take a moment of silence for Kayleigh. Last night she passed away. Kayleigh was born June 23, 2008 weighing 1lbs 1oz. She survived multiple surgeries, fought every step of the way to live. 2 weeks ago she was declared brain dead due to lack of oxygen & blood flow after what was going to be her final surgery. It was thought that Adam & Aimee were going to be able to get her home & spend what time they had left with her at home. Unfrtunately they never got the chance to get her home. I've been following her story now for almost 10 months & loved her. My heart breaks for this family. They have fought so hard for their little girl to get her home where she belonged. Kayleigh touched many lives in her short life & will continue to do so through her story. Say a prayer for this family as they go through this sad time.

Monday, May 11, 2009

Ethan's Birthday

With Ethan's Birthday coming up it's going to come up what he needs. Right now Ethan could use clothes for this summer or clothes for the fall. He's wearing 12M now so he will be needing 18M sizes. He could also use socks. Many of the socks he has are starting to get small on his feet. We don't have any onsies for him he could use some 12M & 18M plain onsies. When we get into the more warmer weather he won't be wearing too many jammy's he'll just be sleeping in litlle onsies. It can get quite warm upstairs. He could use a few toys that he can push around the house to help him with his walking. But for the most part he is good to go on toys. He still has a few drawers full of toys in the basement that he is yet to grow into. Currently Ethan is not into toys he's into the cats toys though. Ethan is no longer using bottles he is into sippy cups right now. He could use some regular childrens cups. We are working a bit with him on drinking out of a cup. He's getting better at it but he needs some work. LOL. He could also use some divided plate sets. I know that the Gerber brand is the best price. He is good on silverware I just bought some a few weeks ago. Hopefully that will help people find something for him.

Ethan gave me a good Mamma's Day yesterday. I got a cute card from him & a candle that is melon scented. Then he & Matt took me out for an early lunch at Cafe Maries. We pretty much spent our day putting up ceiling fans in our room & Ethan's room. It was great b/c I got to spend the day with Matt & Ethan. That's what mattered to me. Ethan was such a big help in getting the fans up. He was picking up all the things that Matt dropped & then I helped by taking away all the things that Matt dropped. Ethan can be such a big help when he wants to be. Although most of the time he creates more work for us when he helps.

The bracelets arrived today so I will have them ready for Ethan's party. His Invites are going to be going out sometime this week so be on the lookout for them soon.

Saturday, May 9, 2009

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.

Friday, May 8, 2009

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.

Wednesday, May 6, 2009

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.

Tuesday, May 5, 2009

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.

Sunday, May 3, 2009

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

Saturday, May 2, 2009

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.

Friday, May 1, 2009

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.