Look Who's Reading

We were cleaning today and Ethan and I lost track of Jayden for a minute. We found him IN his basket of books reading. Of course he turned and smiled when he saw us. I'm so glad my kids like to read as much as I do!

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Jayden's Next Hospitalization

Jayden's next hospitalization is scheduled for next week. He has a pre-op appointment on Tuesday, a milk scan on Wednesday and then will be put under for the CT scan, endoscopy and lung biopsy on Thursday.

Hopefully it will all go smoothly and we may be out by next weekend. If not, we may have a bit longer stay, but he's a trooper and we hope these tests may give the doctors some more insight.

We'll keep you all updated on here:)

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A Peak Inside Our Christmas

We had a fabulous and blessed Christmas. Here are a few pictures from last night and today...

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More Good News

Jayden has nearly put on a pound in two weeks - which is half of the amount he gained in nearly 7 months. Seems the formula is working well! He is even getting a little bit of baby rolls on his legs. It's funny because neither he nor Ethan have ever had any.

The boys are really excited for Christmas. Ethan keeps standing at the window saying, "Santa, oh Santa where are you?" and making little comments during the day about Santa coming when he is sleeping.

Everytime he sees a Christmas tree he says, "Happy dirday Jesus!" and he is so excited to celebrate Jesus' "Happy dirday."

We've been busy making empanadas, Christmas cookies and praying as we await Christmas. (Ethan and Jayden both LOVE the advent candles and Ethan reminds me if I don't light them for a meal).

Merry Christmas to everyone! May 2009 bring many blessings to you all:).

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Santa

Ethan loved Santa - Jayden was freaked out, but we had a good time. The store near our house has a free Santa away from the crowds (and people with germs:). When we went, we were the only family there except for our friends who also came to see him. Bonus: we got to take our own pictures, so we didn't have to pay the crazy amounts for mall Santa pics.

Ethan and Ella enjoyed Santa's chair after Santa had to hurry back to the workshop to make more toys.

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Finally Gaining Weight

We took Jayden in for his weekly appointment with the ped. and he finally gained weight - 6 ounces! That is 2x more than he gained in all previous five weeks combined. He is going to continue on the formula and we are working on increasing his nightly feeds. We are so relieved we finally have something that seems to be helping.

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Trains & Jesus' Birthday Party

We've been quite busy and have even gotten out a bit besides the never ending doctors appointments. We've been trying to schedule fun stuff on the way down or home from CHOP so the boys get to have fun too. We went to the Reading Terminal holiday train display before the GI appointment the other day and Ethan went nuts. There were 10 different electric trains running in all these different displays. He was in heaven!

Today we went to baby Jesus' birthday party. I think the pictures were a riot because Jayden (who is supposed to be baby Jesus but refused to stay covered up or lying down) and Ethan (who is the little drummer boy) just stared at the nun taking the pictures. I got them to smile a bit for my camera, but the pic is a little washed out with the flash.

PS: We have to change his tube at least once a week and for the first time, he hadn't pulled it out all week so we chose to take it out today and let him have a day without it. It was great!

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A Little Progress?

We had a GI appointment yesterday and the doctors switched Jayden's formula from the Pediasure to Peptamen, which is an already digested formula, since he has gained no weight in the past three weeks on the tube. It pretty much takes any work (and hopefully eliminates) any potential digestion problems.

He had it all night and woke up and wanted to eat! We were so happy he ate normally throughout the day so we may be on to something. Guess we'll see at his next weight check on Tuesday. We'll have to see.

They are working on scheduling his four procedures together just after the new year so we will let you know when they are set.

He is cruising all around and crawling like crazy so physically, he's doing well.

That's enough fun for Friday night:)

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A Little Fun

The boys enjoyed hanging out with us and each other today and Ethan was thrilled with the tiny amount of snow we got last night and begged Jim to help him build a snowman. Jim said it was the tiniest one he has ever built:).

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Update On Jayden 12-07

I'm sorry I can't be more creative with the titles, but whatever:).

So Jayden finally turned the corner with what he had been battling the last 4 weeks or so. It took a new dose of a new antibiotic, but it seems to be doing the trick and he is now almost back to where he was at the beginning of November before he started getting this (at least breathing wise).

We were at the doctors every day last week, but on Friday we had to take him in to the pulmonologist. His pulmonologist, Dr. K, told us he is getting more concerned because despite our tube feeding, Jayden has not gained anything. He actually lost a tiny bit of weight (he was 7.93 kg a few weeks back and is now 7.86 kg). He said that despite this, he is glad we added the tube because at this point he could very easily be losing weight if he wasn't getting this added to his diet.

It may not be very apparent right away the issues his breathing has on his weight, but one concern is the more he has to work to breathe, the more calories he has to burn to breathe and the less is being packed into his body. So theoretically, if we can help his breathing and keep him relatively stable, we can more easily help him gain weight.

The good news is that his test show he is absorbing the fat and nutrients in his diet, so it is likely not a malabsorption issue.

We will see a GI specialist this week and after that it looks like we will have him admitted into the hospital for another round of procedures, but if all goes well, it will only be an overnight stay.

They want to do the chest CT scan, a milk scan, a lung biopsy and an endoscopy (assuming GI wants one, which Dr. K thinks they probably will). All of these except maybe the milk scan require anesthesia for him, so we are hoping to line it all up together and only put him under once instead of multiple times. There are always risks, and especially the lung biopsy carries a bit of a greater one, but they really need to get to the bottom of what is going on to really help him.

Dr. K said we are really getting into the realm of very unusual things (which we kind of figured at this point;) and they are trying to explore the more likely and less invasive possibilities first.

Jayden is still as happy as ever as long as we aren't doing medicines and sticking tubes down his nose:). Somebody forgot to tell him he's sick because he sure doesn't act like a sick baby most of the time. The docs and nurses always look over his chart before meeting him and expect him to look much sicker than he appears, which we take is a good sign.

We have such a wonderful, caring community and although this is so overwhelming at times, it is also our normal and we get adjusted each time things change. God always blesses us with what we need as we need it and we are so grateful for that.

We are praying now God will lead the doctors down the path they need to explore to find something to work for Jayden. In the meantime, we pray Jayden does not contract the flu or anything else and we can keep him healthy enough to do these procedures.

They want this all done by Christmas, but we will have to see how it works out. Likely it will all take place quite soon so we'll keep you posted.

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Videos

I just added two videos - one of Ethan and his "mamacules" and one of Jayden playing peek-a-boo. You can see them here.

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