Issues and no answers

Been a little while since I updated last. Not sure where to start.

Emily is still having issues, but no answers. She had an appointment with the lung doctor in Cincy, and they are very pleased with her lung progress...so much that she does not have to go back there anymore. She is to follow up as planned in Louisville with pulmonology next month. Cincy doctor did reccomend we get Emily an echocardiogram due to all the swelling (to rule out pulmonary hypertension), and that thankfully came out okay. That is great except Emily is still puffy, weight fluctuates 3-6 pounds up and down, her left arm and leg at times are much larger than her right, and at times the veins in her neck stick way out and visibly "pound" (and she whines and complains that this really hurts when they are doing this). At other times, she doesn't look too bad. What we have found that what helps somewhat is wearing oxygen most of the time (her weight holds steady at 47-48 pounds on oxygen, but it jumps to 51-53 after being off for more than a few hours. When her weight goes up is when she starts breathing harder, whining a lot, complaining of the neck pain, etc. That seems to be when her arm, leg, face, and belly puff up too. Why this is happening, we don't know. This is very frustrating for us, especially as we don't feel like anyone seems to care to find the cause. I think the doctors have written it off as "side effects of medication," but I would think it would have gotten better by now. I do find comfort in the fact that at least she is doing so well, other than these "minor" complaints.

Otherwise she is doing great! She finished out her wrestling season with a Freestyle State Championship...very exciting! We are not signing her up for any additional sports right now until we feel more comfortable with whatever is going on with her health. We also have her follow-up bronchoscopy on hold for the same reason. I'm not about to rock the boat!

She continues to go to school and is doing very well. She has developed a lot of pre-reading and math skills and is even trying to spell out easy words. Not bad for a kid who has only been talking 16 months! We went to parent teacher conferences and her teacher is pleased with her. Emily will not be going to kindergarten next year due to her late birthday (missed the cut-off), but that's probably for the best anyway. She has missed a LOT of school this year, and I am not sure how "real" school will deal with that, and frankly, we're not too anxious to find out. :)

Grizzly Iron Man

The boys wrestled at the Grizzly Iron Man Tournament today and did great! So far, Ryan won the Freestyle division and got second in Greco, while Ashton brought home the silver medal in each! Tomorrow is the Folkstyle portion of the tournament, so we will be up and at 'em early again tomorrow.

Emily did not wrestle today, but she came along and played with and cheered for her brothers and teammates. She must have peed 45 times today, and I am hoping that might mean that her weight will be down some...will check it in the morning.

Pics of the kids posted, in no particular order. The first is of Emily resting in a lawn chair between the boys' matches, then Braylon early this morning, Ryan with his medals (so far, hopefully there will be another one tomorrow), then the others are of Emily with teammate Skyler. Emily says Skyler is her "boyfriend," and he is a great kid to play along.

Back to a Normal Routine

New pictures taken the past few weeks are above. Some were taken on the Heritage Trail in Madison, then the others were at the Boys Club with cousins Daisy and Lilly. Funny, Emily immediately thinks she is supposed to get into her wrestling stance to pose for any pic at the Boys Club. Silly girl!

All in all, Emily is doing fairly well right now. She returned to wrestling practice tonight but didn't last very long before she plopped down on the ground on her belly during the middle of a drill and refused to move. Usually this is a sign of de-satting and needing oxygen, and I fully expect that is what happened this time, but as Daddy had forgotten her oxygen bag and pulse ox, there is no way to tell for sure. At any rate, she came and sat on the bleachers with me and would not go back out there the rest of the night.

She did weigh in for next week's tournament at the Boys Club...weight still up a bit at 48 pounds. It will be interesting to see who they pair her up against next week for Championship Week.

And this is totally unlike her, but she is choosing not to wrestle at the Grizzly Iron Man this weekend in Franklin even though she knows there are trophies and other prizes up for grabs. Her reasoning is that she does not feel too good and thinks it might be better to just watch the boys this weekend, so long as she can still go to State next week. She came to this conclusion after clarifying that the Iron Man would have boys for her to wrestle, whereas State Finals would only have girls. I think she is still feeling skiddish about wrestling boys after being thrown last month.

When we got home tonight, she pretty much went straight to bed, choosing to skip dinner. Not like her at all! I'm hoping that maybe she is just tired and not coming down with something.

Good News!!!

The GI office called this morning, and Emily's alpha 1 antitrypsin test came out normal. Yay!!! Not that they really thought it was that anyway, but it is always a relief when a test like this comes out okay!

Then Emily had a follow-up with the pediatrician today. Her liver size has returned to normal, and it is no longer firm. Hooray for that as well! The pediatrician and GI doctors STRONGLY feel Emily's liver enlargement and edema issues were caused by medicine. Which medicine? We don't know...possibly the Erythromycin, possibly a combination of all the meds she has taken over the years for her lungs. Right now, I am pretty much afraid to give her any meds, just giving her Advair and have given her a couple doses of Prevacid this week, pretty much just when she was vomiting though. This whole mess has me terrified to give her anything!!!

She follows up with Dr. Young next week, so I am hoping to get clearer instructions on what is medicine is absolutely necessary for her and what isn't! One thing I can tell you, NO MORE ERYTHROMYCIN, never ever again!!!!

For now, we are just so thankful that she is doing better. :-)

Update on Appointment with Liver Specialist

Emily had her appointment in Cincinnati today with the liver specialist. The good news is that her liver is smaller than it was Friday, although it is still enlarged. Her weight is also down to 47 pounds. They think she is going in the right direction. They don't think this is caused by a disease, although they are doing tests just to be sure. The ultrasound and doppler were good, showing no blockages. They did a lot of labs just to make sure things are going to be alright, including alpha 1 antitrypsin....I don't know how long the labs will take, but they will call with results. They have a few ideas about what could be going on....a weird reaction Emily's body had to some virus or some medicine, or that she drank too much milk washing too much protein out of her intestines (Emily loves milk). At any rate, it has been a very frightening few weeks, and we are going to work hard to get her body back to normal. We are to limit her milk consumption (which is the exact oposite of what the nutritionist reccomended for her in October), and also we are holding all meds except Advair for now. No need to overwork the liver if it isn't absolutely necessary. And no sports of any kind for at least another week. And as for the question of could this have been caused by her sports and activity, the answer is no....they said she would be in SEVERE pain if that were the case, and she is not. This is just something weird that happened, and we hope it is something we can get under control and will never happen again. So all in all, a pretty good day!!!

Appointment Set for Tomorrow

Appointment with the liver specialist and GI has been set up for tomorrow morning at Cincinnati Children's. Emily will also have another ultrasound looking for anything Madison might have missed. Fingers crossed we will get some good answers!

I went ahead and called off the bronchoscopy, which was scheduled for Friday. I figure there is no way I am letting anyone sedate her until they can tell me more about what is going on.

Will update more when I know more.

Waiting for Monday

Emily remains bloated today, and she has a few new symptoms as well. She is complaining intermittently of abdominal pain, feeling like her "guts might pop" if she bends over, occasional complaints of chest pain, frequent little pale yellow poo's with blood, and now also wetting her pants every few hours when she hasn't done that for years! No severe distress though, so I'm still watching her at home, but we are very anxiously waiting for Monday, when we can get back in touch with the doctos. I don't know what we are going to do with her!!!

She was able to go watch the boys in their tournament today, and then this evening she rode in her little cart behind Denny's bike as we went bike riding. She also played a little in the park before dinner. I am just glad she is still happy and able to play considering everything.

I am attaching a few pics for effect below. The first was one month ago at the Folkstyle Wrestling State Finals, when she was barely 44 pounds. The second is today in the park, 49 pounds. What a huge difference! I really hope we can figure this out quickly so I can get my girl back to normal!