The LONG awaited update (it's definitely LONG)

[Guest guest]

53 Days Post (Liver) Transplant 555 Days Post (Lung) Transplant Well, so far so good for the most part. 's been out for 18 days, and has only been admitted once overnight to watch him after his bronchoscopy (which got postponed from that Thursday to the following Tuesday because he was throwing up in the hallway at Peds Sedation). So far nothing yucky has come back from that bronch. As far as the Langerhan's, it sounds like they seem to feel that if it WAS there, it's gone now after the liver transplant, so unless any new problems show up, they're not going to treat him for it. Still makes me nervous, but okay. I'm waiting for word from the doctors on how much longer they want us to stay up here. So I know how much time we have to find a place to live back at home. We had considered staying closer to this area, but with some other things going

on, we need to go back. This makes me VERY nervous. I was checking online with some of the realtors in the area and found a house in Hixton with 4 bedrooms that we'd like to look at (no photos of the inside) and see about trying to get the money for. I wish I could sell enough jewelry that I haven't been making lately or my right leg or a couple of kids or (oops, did I say the kids?) or I don't know what so we'd have the money for it, at least for the downpayment. With the reality of leaving here coming so close, I'm really starting to worry about a lot. * Will Dr. Mahan be comfortable taking care of now with all of his problems he has? * Does anyone at the lab in Black River know how to draw labs off of a line or from a port (if we get it changed to that before we leave)? * How long will it take to get his labs done and back having them drawn down there? (It already takes about 7 hours for a

Prograf level here!!!) * Will we be able to get him back up here quickly enough if something happens? * is so short now and has so many problems, are the kids at school going to be mean to him about it? (Children can be horrible sometimes, ya know!! And he's only the height of a 6 year old right now at 9 years old.) * Do I need to get an IEP set up for him before he goes back to school so they don't give me a hard time about him missing school for appointments or when he's sick? * Should I have him start half days for the first short bit or straight to full days? (Here full days means 7 hours, back home it's 8 hours of school, and up to 2 hours on the bus.) * Will the newer doctors and nurses at the ER treat me like I'm a brainless twit if I bring him in there and tell them what needs to be done, or will they treat me like a mom who's been caring for her ill child for the last 3 years and should have her

own nursing degree? * And who am I going to talk to about things with ? No one there is going to have any clue (besides my momma) the kind of things we've gone through and will continue to go through and the kind of stress and worry even when the child is doing well. Right now, I live in a house where EVERYONE understands. I don't want to be talking to someone about 's two organ transplants, who's TRYING to be nice and sympathetic, and have them tell me they know just how I feel because they were so scared when little Suzie had her tonsils taken out. You DON'T have any clue. And we know the person is doing their best to relate, but that's just annoying. It's nowhere near close to the smallest thing he's had done. BUT, then I have to be nice and remember it's all relative. And of course that was scary to them. Just like two years ago it would have been terribly scary to me. Kind of how, at one time, I thought a 3 pound baby was small. Now, to me, it's a

heiffer. Why? Because was 1 pound 6 ounces. But a 3 pound baby IS small. And it IS scary, and I have to force myself to remember these things. To remember that I have spent two years living in a bubble world where our concerns are major, but it doesn't mean other peoples' aren't major to them, for what they have to compare with in their lives. I'm just not sure how I'll do being surrounded by THOSE people now, instead of "my" people. * Will I be able to work? Eventually Jon will be taking a "leave of absense" from the family for a time, and we don't get child support from 's mom, so will be well enough that I'll be able to work somewhat? Too many questions running through my head these days. Thank goodness for my doctor up here and him loading me up drugs - LoL. Shuts my brain down at night and I pass right out. ANYWAY - The kids started school on Tuesday. Seems to be going well.

's gone every day so far, full days. Complains in the morning, but has nothing negative to say after school. Emma's mad because they put her in the same math as . It's the same math she did LAST YEAR. So she's bugged about that. I don't blame her. She shouldn't have to redo the same work she already did because the teacher isn't sure what TO have her do. It's not E's fault she's a smarty pants. hasn't said much about what she is or isn't liking at school right now, so I can't say much about that. really hasn't needed oxygen during the day the last several days now. We still put him on it at night because it makes me feel more secure. His dressing changes are going well, and his wound is healing beautifully. Getting our supplies is another story entirely. That's a gigantic pain in the butt. is, however, feeling pretty good. He's been playing video

games with some of the other boys, hanging out, doing more walking around the house. Little by little his eating increases. I'm definitely happy with the direction things are going. AND . . . I guess that's about all I'll say for now. I've definitely babbled on long enough. Hugs!!! Ami Ami mom to - 9 yrs - Double Lung Tx 2/26/2006, PSC - Tx 7/16/2007, Central DI, Diabetes, Hypothyroid, GERD, High BP, ADD, Anemia, Osteopenia, Gastroperesis, Varices http://caringbridge.org/visit/seanfox mom to Emma - 13 yrs - Migraines stepmom to - 14 yrs - ADHD, ODD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Be a better Heartthrob. Get better relationship answers from someone who knows.Yahoo! Answers - Check it out.

[Guest guest]

Ami, re: your comments below: I hear ya. It is so annoying when my sister in law who does not work and does not even leave the house in the morning as her 6yr old gets picked up by the bus right outside her door, complains about how hard her life is. She is soo tired and the 3yr old is such a handful that she ships her off to grandmom's in another state every other weekend because she is selling the house and cannot deal with the little one when realtors are coming thru. Meanwhile they are moving to a bigger house but the bus will come 1/2 mile away so now she will have to drive her daughter to the bus stop and how hard that will be with the 3 yr old and all. Was soo worried about having the 6yr old's birthday party and thinking about it in August when her birthday is not until mid December, that she actually had it at the end of August just in case they sell the house and are too busy moving then. Believe me , the whining would have never phased me, but now that I have a very sick little boy, that people who whine about this trivial nonsense, just infuriate me. They do not have a Clue..

All your worries are justified. My advise is do what you think is right and do not worry about what the school thinks or does. If he needs to stay home just because he wants to stay home, let him. Love him every second , every minute every hour of every day. And, just pray that those people who do not have a clue, never have to experience something like this as I am not so sure they could handle it. Maybe that is why God chose us because we are strong and will fight and do what it takes and perhaps advocate so much that a Cure is found....

Thinking of you and !!

Ostos

mother of Tyler (age 9 PSC,UC and osteoporosis)

and McKenna age 5

I live in a house where EVERYONE understands. I don't want to be talking to someone about 's two organ transplants, who's TRYING to be nice and sympathetic, and have them tell me they know just how I feel because they were so scared when little Suzie had her tonsils taken out. You DON'T have any clue. And we know the person is doing their best to relate, but that's just annoying. It's nowhere near close to the smallest thing he's had done. BUT, then I have to be nice and remember it's all relative.

At Your Service,

Stevie Lynn Gedgaudas

Customer Care Manager

Apple Vacations

101 Northwest Point Blvd.

Elk Grove Village, IL 60007

sgedgaud@...