Saturday, October 24, 2009

Late October Update


We went to our 6 week follow with GI this past Monday and he FINALLY gained enough weight for them to let us have 3 months between appointments again instead of 6 weeks, which has been going on since April. Of course he pooped twice about 10 minutes after he was weighed, but whatever. They think he weighs 22 pounds so we're going with that:). They also didn't even mention the GI tube which means we're back on the rightish track. His BMI dropped to 13% but that's mostly because he gained height. His weight is still right about 1 % but his height is 25 and his head is, of course 50%, because he is a Lozano and we would expect nothing less:). Dr R. said his body wouldn't invest in his height if his nutritional needs weren't being met, so that's definitely positive.

We still haven't gotten the H1N1 shots because they haven't been available to us. I spoke with the Department of Health and they said when they get them in, we can find out from our pediatrician, but our ped. office said that they have heard nothing and don't think they will get them in their office as of now.

IF we can get the boys the shots in the next months and IF everyone's health holds up ok and IF the flu is not too horrible, we may still be able to head to St. Louis for Christmas - we just have to wait and see. Part of the reason we are driving is because we know all of that can change in a second for us so it gives us the flexibility to make the decision the day of if we need to.

The H1N1 virus is quickly spreading through families around here and so we are doing our best to keep Jayden isolated. He is so anxious to leave our house, but the park and the doctors offices are as far as he's getting right now.

Dr. C - our pediatrician, said if he needs to be seen, we will bring him in before the office opens so it is still disinfected and she will come in early to check him out - works for me. He, Ethan and Jim are getting over something that wasn't horrible, but was working it's way to the respiratory tract. It seems we have stopped it and that would be a small victory:).

Jayden starts his Synagis shots in a few weeks and so that, coupled with the flu and hopefully H1N1 will give him the extra boost he needs. The flu vaccines do not mean he won't be able to get the virus, but it does mean if he does, he should not get it nearly as severe as he would without them.

For now we are trying to appreciate the isolation. We did get some additional nursing, so two mornings a week I am able to take Ethan to school and do an hour or two of errands, which is a blessing (and just get out of here:). I am still not sure how we will do trick or treating, but if anything, it will involve a lot of hand sanitizer!

Enough for now - I hope this is the types of updates I get to do all winter. That would be the best:)

BTW, I am starting to write up about our high fat recipes. Want some PediaSure waffles? They are DELICIOUS (at least of course to Ethan:).

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Monday, October 19, 2009

My Day

This is how we ended our day - running to the park. Even though I am often tired, I am so blessed to stay home and raise my boys. (Can't you see their energy even from a still picture?)

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Wednesday, October 07, 2009

Firsts All Around

We have had a summer and fall full of firsts:

The boys first time inside a helicopter:




First day of school for Ethan






First haircut for Jayden



First 5k for Ria



and last but definitely not least, first visit to Gettysburg for Jimmy (but not first time to strike a goofy pose for a picture. Yes he thought looking down the barrel of a cannon was the best photo op around;)).

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Tuesday, October 06, 2009

October Update

We're just pluggin along here. Things have been going well. Jayden caught his first cold of the season and it has moved into his right lung, but right now it is not turning horrible, so we are praying it will resolve itself.

His nurses start extended shifts on the mornings Ethan has school, which should be a little bit of a break from being home all the time. It looks like two of the three we will have are the same ones we have been working with for months now.

We are just awaiting the H1N1 shots and the boys are all set with their flu shots. Dr. K down at CHOP said all the pulmonologist are being asked to work extra shifts already and the hospital was completely full with respiratory issues. Our goal is to stay out of the hospital this winter or at least stay out as much as we can.

If we do end up there, I will post updates on here since that seems to be the easiest way to let people know how Jayden is doing.

The pulmonologist expressed continued concern over Jayden's lack of weight gain, but we'll see what happens on our next GI visit. He also has growing concern for Jayden's inability to ween off one of his neb treatments. We can only get him down to two a day in the summer and any more his oxygen levels drop a lot more. The medicine they have concerns about is primarily a rescue drug so I think in the spring we may try to switch to other maintenance drugs and *hopefully* ween him down even further than he was weened this summer. For right now though, we are just in maintenance and prevention mode.

In other news, Ethan is starting school tomorrow and is very excited. He has also tried out a karate class and LOVED it. He is busy with his friends and often wants to call grandmas, grandpas and aunts and uncles on the phone to talk with them.

Jayden is quickly becoming a little boy and not as much a baby anymore. It is wild and I'm not sure I'm ready for it yet.

Both boys have enjoyed all our visitors and often ask when we can go visit them.

Know you are all in our thoughts and prayers. Please continue to prayer for strength and patience for Jim and me as we go back into on-guard mode.

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Visitors Part IV: Mom and Grandma

The boys had a blast with Mom and Grandma. It was the best birthday present and the boys enjoyed all the fun:)













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Visitors Part III: Dad

Jim and his dad headed to Gettysburg as a present for his 30th birthday. They spent two days to go through the whole tour (I think it says it is a 3 hour tour:) which is exactly how they wanted to do it. We were so happy they got to have the weekend together.





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Visitors Part II: Our NY Friends

Some of our best college friends and kiddos came to visit on the way to St. Louis. We had a blast with all the kids together. Every time we get together now it seems we have new additions.





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Visitors Part I: Uncle John

Tonight I am going to post several posts - so sorry ahead of time:). We have been super busy with good health (yay!) and lots of visitors. So if you like pics, read on and you will get inudated tonight.





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