Important Information about Ethan

It wasn't until now that we have been able to come forward about this. Matt & I have know since Ethan was a couple weeks old that he has a metabolic disorder. I'll start from the beginning. When Ethan had his newborn screening one portion came up abnormal. His bloodwork showed that he had elevated levels of phenalaline (a protein that the body breaks down). Further tests showed that he may possibly have Phenylketonuria (PKU) - an autosomal recessive genetic disorder characterized by a deficiency in the enzyme hepatic phenylalanine hydroxylase (PAH). This enzyme is necessary to metabolize the amino acid phenylalanine to the amino acid tyrosine. This can be treated through diet, if left untreated it can lead to brain damage. This is treated through diet by taking in a minimal protein intake. A person who has this is essentially a vegan. Ethan was put on a special formula that has no phenalaline in it then was tested again a week later. His levels came back dangerously low so they did half Enfamil & half Phenex then tested him a week later. Again his levels came back dangerously low. A genetic test was done to see if Ethan had PKU. While we waited for the test results on that his levels were checked every week. Each week his levels continued to come down. It was suspected that he had what is called transient PKU from a immature liver. This means that the levels would slowly go down to normal over time as the liver matures. His genetic test came back that he is nothing more than a carrier for PKU.

Since he has been home we have continued to keep him on a normal diet & monitor his levels every month (now every 3 months). The last 4 levels have hovered in the 4.0 range which is safe. Normal range is less than 1. Anything between 2-6 is considered safe & does not need to be treated with diet. 6 months ago it was assumed that he has Hyperphenylalaninemia - an abnormally high concentration of phenylalanine in the blood. This symptom may be the result of one of several defects in the metabolic process of breaking down phenylalanine. Essentially Ethan has some of the enzyme needed to break down protein.

To explain further how it works, all foods have phenylalanine in it. The body breaks that down into Tyrosene. Then that breaks down into other amino acids. A person who had Classic PKU (CPKU) can't break the phenylalanine into Tyrosene so when they are tested their Tyrosene levels will show up as low. Normal Tyrosene levels are 20-110. Ethans levels have been coming back on the high end of normal between 70-90. This means that he is breaking down some of the phenylalanine.

Ethan has been seeing a specialist for this. We have been talking to the dietician that works with that group. She didn't recommend that we start Ethan on meats until he was 10 months but we decided to push the envelope a little & went ahead & started him on meats 2 weeks ago & his levels came back the same as they have been. So we met with his Dr today & they would like to do a challenge. What they want us to do it to give him meat every day & then get him tested again in 10 days. If his levels come back still in the 4 range then we are going to know that there will be no need to limit what foods that he eats. If his levels come back above 7 then our course of action will be to limit how much meat he can have. The reason why we worry about the meats is b/c meat has high level of phenylalanine.

There are a few things that Ethan will never be allowed to have. These things are anything that contain NutraSweet, Splenda, Asparteme, essentially artificial sugars. The foods that include these would be diet pop, protein shakes, & any foods cooked with these.

We are going to be keeping a log starting 4/1 of everything Ethan eats. We'll continue to do this until we know for sure how much meats Ethan can tolerate in his diet. B/c we are keeping track of what he eats we ask that we are asked first if Ethan can have certain table foods before it is given to him. We need to know how much is given to him so that we can log it into his food journal.

The reason that we didn't come forward about all this in the beginning is we just didn't understand it all ourselves & there really were no answers. Things like this take time to figure out. It has taken us 9 months to truly understand how it all works. At this point there are no concerns. His development is right on track for what is expected of a preemie.

A quiet day

I am so glad that there is no work going on around the house today. Poor Ethan is worn out. He woke up a crab this morning. He has been hard to get down for naps & not very willing to let me get things done around the house. I have been working on getting him to realize that he won't always get what he wants. For some reason Ethan has started this thing where he doesnt want to play by himself in the mornings. After his breakfast I put him in his bouncer or playpen while I clean up his dishes after that I get in excercise then a shower. From the time that he finishes breakfast to the time I get out of the shower & dress only an hour has gone by. Right now he refuses to play by himself. He just screams & cries as soon as I set him down. I try to include him by talking to him. Ethan is happy if I let him crawl around on the floor but b/c he gets into everything I can't get a workout in & keep him out of things. I am hoping that this phase is going to pass rather quickly. I have been doing some reading on his age group & I have read that infants at this age are testing how far they can go before crossing the line. I'd say that's what Ethan is doing. He's still my little sweetie though regardless of how he acts.

What a long weekend!

This has turned out to be a very long weekend for Ethan. Friday the contractors were here to get started on the ceilings. They told us that they were going to be working on them all weekend. They got to the house about 9:30 in the morn & didn't get finished until 7:30 that evening! They ran into a problem with the ceiling in the living room. There was a spot that was sagging from all the water damage that occured when a pipe leaked. On Sat. they got to the house around 10 & left about 1. There wasn't much that they could do since the bedroom ceiling didn't dry during the night. They did some work on the chimney since there was water damage to that & they got the living room ceiling sanded down & prepped for texturing. Today they sanded the bedroom ceiling & got the 1st coat of paint on it & they got the texturing finished in the living room & a coat of paint on that. They will be back Tues or Weds to finish the job. Poor Ethan has not been able to nap like he normally does. In a typical day he takes a 2-3 hr nap around 11:00 & a 1 hr nap around 5/6. Well Fri he got a total of 40 mins broken up into 3 naps, yesterday he went down around 1 when the guys were gone, then today he took a 10 min nap in his swing after he cried for 45 mins then we managed to get another half hour or so out of him around 3. Once the guys were gone for the day Matt aired out the upstairs & the living room & we were able to get Ethan down for a nap in his bed by 4. Of course he fussed for a half hour before finally falling asleep. It's 6:30 now & he's still sleeping. We are going to give him til 7 then wake him up for his dinner. My poor baby is just tuckered out from all the activity all weekend. While they work in the living room we take Ethan down to the basement so that he isn't around all the dust & fumes. Tomorrow will be a normal day. I don't plan on going anywhere I have things to do that I haven't been able to get done due to all the work being done. We'll be glad when it's all done. It's nice to look up at the ceiling & not see an ugly brown stain on the ceiling. It really detracted from all the work we did when we bought the house.

So much excitement

There is so much excitement going on in the house poor Ethan has resisted taking a nap. The contractor is here today working on our waterdamaged ceilings. The guys have been in & out all day & poor Ethan doesn't know what to do. He woke up with my alarm this morning @ 7:30. I wanted to be up before him so that I would have time for a shower before I had to get him up, dressed, & fed. Normally he wakes up anywhere between 8-9 am. Go figure that today of all days he had to be up earlier. I had hoped when I set the alarm last night that he wouldn't hear it. I did manage to get a shower & dress before getting him up. Good thing he likes to babble to himself for a half hour when he wakes up. It's 12:42 right now & he's been sleeping for the last 10 mins. Lets hope it lasts b/c it took 45mins to get him down. He's sleeping in his play pen instead of hic crib. Since the work is being done upstairs & the drills are quite noisy I figured he would be better in the living room. The work should hopefully be done by the end of the weekend. It'll be nice not to have that ugly water spot in the living room anymore. Once all the work is done we can get started on re-painting the spare bedroom. Finally we can get rid of that horrible green!!!

Earlier today I put Ethan in his crib with a snack of teething biscuits & juice. Those things are so messy hence why he has to eat them either in his highchair or his playpen (crib). So while he was enjoying his little snack he was holding onto the side of the pen & taking steps around it! Not too much longer & he will be running around. It's so exciting but a little sad too. It's sad b/c he's grown so fast over the last 10 mos! It is hard to believe that this is the same little boy who was born 10 wks early weighing only 3lbs. Now he is passing 17 lbs!! Where did the time go. Soon enough we will be planning his 1st b-day party. Then I'm really going to wonder where the last year went. The 1st 8 weeks seemed like they were never going to end but then he came home & it seems like time has just flown by. Ethan has turned into quite the little man. He's a very determined & stubborn little boy. He didn't really have much choice there, Matt & I are both extremely stubborn & determined. We just point the finger @ eachother & laugh. As trying as Ethan can be when he doles out kisses it all becomes worth it. It's going to be interesting watching him grow & learn as the years go by.

Just to let everyone know Ethan's old site has been shut down as of today. I haven't been adding to it everything you want to know about Ethan can be found here.

Teeth, teeth, & more teeth

Ethan has a 3rd tooth coming in. We discovered it the other night. So now he has 2 teeth on the top & one on the bottom. He's doing better now that one of them has popped through. The other top tooth should pop any day we can see the white of it just below the gums. He still isn't into letting me workout in the mornings for a half hour. I have been putting him in his playpen or his jumperoo while I excercise, grab a shower, & dress. He screams the whole time. Of course the second I let him loose on the floor he cheers right up. He'll just have to get used to not having my full attention for an hour a day. I'm hoping that after a week things will change & he will play by himself instead of cry. Ethan is so used to having our undivided attention that to not be allowed to be free on the floor w/us chasing him drives him nuts.

It looks like sometime this week the contractors will be over getting the ceilings fixed up. We got all the furniture moved out of the spare bedroom & into the hall. Once they are done we have decided that we are going to re-paint that room. That bright green has been driving us crazy since the day we put it up. It was a project that was going to be done over the summer but since the furniture is out why not get it done. That green was not supposed to be as bright as it was. It was supposed to be a really dark forest green. We picked up some samples & have picked out several colors that will look good with the hunter green carpet. We are going to be narrowing it down over the week. Our goal is to get that room completely finished so that we can keep the door open & let air circulate through it. I will just be happy to have the ceilings fixed. The leak in the roof has been repaired all we have left is the ceiling.

Welcome to the new site!

Welcome to Ethan's new site! I will be posting new pictures with this entry, you can find them at the end.

Ethan is doing good. He's been pretty fussy with these new teeth that he's got coming in. He's got this new thing going right now with getting upset when he doesn't get his way. I'm hoping it's going to be short lived. Ethan likes to get into things that he shouldn't be getting into. His current fixation is the plug that has the TV, DVD player, cable box, ect pluged into. He likes to chew the cord for some reason. When we take him away from those things he goes from being a happly little baby to a screaming little baby. He also is not too fond of being put into his play pen. I am working on getting him to realize that he's not always going to get what he wants (esp. when it's something that will hurt him.) Sadly it's his daddy who tends to jump every time his sweet little boy cries. Isn't it supposed to be the other way? LOL.

Ethan is doing well on his meats. We just started giving them to him about a week ago. The only thing he has had is chicken & turkey. He seems to be more fond of turkey than chicken. We are only doing half a jar 2x a day, every other day for now. It's what the pediatrician recommended us to do.

Ethan has gotten really good at standing on his own. He greets me every morning standing in his crib. He started doing that last Monday. It was a nice little surprise. Soon enough he will be walking. Of course he is really getting along with the crawling. It has turned from being a weird little army crawl to a more natural crawl. Now that he's on the move he can be a real handful. Alongside of the crawling Ethan has gotten into giving kisses. All we gotta do is ask for a kiss & he'll give 'em out. It's very cute.

New pictures:

9 mos old

In his tunnel

How cute am I?

So irresistable

Standing on my own

Taking a little nap

Taking a bath

I think I can swim!