Monday, August 29, 2011

Dr Lungs orders a bronch

We saw Pulmonary today. He wants Lillian to have a bronch done in two weeks. He's going to do a ciliary biopsy, BAL, and a flow somethin' or nother...I don't have the orders right here, or I could type it up. ANYWAY, it is a more in depth way to study her immunity. He also said her sinus CT was very severe in the stuff it showed in her maxilla sinuses. Very unusual...hmmm, we've heard that more times than I care to think about, right? When does my child do anything in the typical fashion? He said she also suffers from some type of rhinitis...can't recall his exact wordage..but it causes her to react much like someone with allergies, it just doesn't show up in allergy testing. So, back on nasonex...OH- AND, I told him we stopped using cingulair...and he said....sinus infection is a side effect of the that for real? I mean seriously, I could have been making her sicker all along. Geesh. Or whichever one of them ordered it for her....crikey.
He ordered another chest xray bc he hadn't done one for her in a while, so we will do that the same day as the bronch. She will be in the bronch about an hour.
I kind of sit on the fence about this whole bronch thing. It won't really change the treatment regiment for her...BUT it could rule out further issues.
We have thought she was getting sick again for several days, she just isn't her "normal" self. He said her right ear is starting to drain. At least I know I'm not a crazy person, I think....
Her V&E has been rescheduled to next week, which is fine with me, one trip a week is enough for this woman.

On happier news, she was in the bathroom the other day, "straightening" her hair with a flat iron. All was good until she attempted to plug it in... crisis was averted, but she gave up on the task once I wouldn't let her plug in. She's a smart little cookie, that girl.

Sunday, August 28, 2011

Goodbye Facebook

Hey Bloggy friends, I'm taking a break from facebook. There are lots of little things adding up that bother me deeply, so I have deactivated my account. I'm not sure if I'll go back, although I like being able to send out prayer requests and the such, I'm not happy with most of what I see there. Just FYI.

Wednesday, August 24, 2011

Next week

Next week we have an appointment with Pulmo and two days later we will be going in for the much anticipated V&E. This is a procedure where they will place a scope up her nose down to the back of her throat and watch where her tongue goes as she speaks. In a perfect world. Her ST says she is tolerating the qtip up the nose pretty good, but still the biggest hitch...she cannot say the words they want to hear for the testing. :/ I have been feeling a little out of sorts for the last couple of weeks. A little edgy if you will. I think deep down, its the test. So much hinges on the test. I keep telling myself that it doesn't matter. Nothing ventured, nothing gained. I want to not care if it is unsuccessful. It is not the end of the world if she doesn't speak. It also doesn't mean that someday the test can't be done again. Ready or not, it's coming up on Wednesday.

Friday, August 19, 2011

Reality reminder

I see the progress Lillian is making as she accomplishes new things. I LOVE it! There is unspeakable joy to see her run, walk, or even swallow a piece of cereal. Yesterday, I had the opportunity to watch her in her physical therapy session. It was such a reality check of how hard she works to do things I take for granted. I posted a video a while back of her riding her tricycle. She can push the peddles about three revolutions and that is it. When I asked her therapist why she thought she only did it three times she said, "that is all she has the strength to do". It was like my heart was being squeezed. It reminded me how truly hard it is for Lillian to be able to do what she does do on a daily basis and a realization as to why she sleeps as much as she does. Sometimes, I guess I'm living in a fairy land. Maybe I can't even convey how I feel, but just to realize how much work it takes her to do what she can do. I love that she can go up and down the stairs with assistance, but it never really dawned on me how much strength it takes her to do so. I'm not even sure why I'm writing this, just on my heart.

Monday, August 8, 2011

When you can't sleep, count your blessings instead of sheep...

......and you'll be counting your blessings.....

It is one a.m. and I find myself unable to sleep, so I started counting my blessings. This week has been rough...Lillian sick, fevers spiking high and fast, ear oozing still, vomit make a rough situation rougher, I became ill as did my eleven year old. Lillian's fever broke after five days. Me, I'm still hanging onto a little yuck, and Isabelle is better, but one eye is very swollen. Tomorrow, I think we will return to "normal" schedules. As I lay here, thinking of the past week, I'm so grateful Lillian is sleeping peacefully again and has made it back to her own bed. I'm struck by the awesome blessing it is to be able to have her in MY bed, right beside me. Not me falling asleep in a chair over the bed, or sitting up on the couch counting hours til meds need to be given. Now, to say I slept would be stretching, BUT, at least I could have her right here beside me. Able to monitor her breathing, her temperature, her movements so easily RIGHT beside me. Something I couldn't do for so much of her life. I vividly recall in that first year feeling so bewildered because I couldn't just pick her up from the crib to even comfort her. There was so much equipment and tubes and attachments.....oh my how I can recall the pain that sliced through me as I felt helpless to really BE a mother to her. I shed so many tears as I feared she would not bond with me or feel loved bc I could not physically show her my love. Counting my blessings instead of sheep.

Thursday, August 4, 2011

Shocking news

NOT. Even though we were confident Lillian only had an ear infection, I had to take her to the doctor this afternoon bc of her prolonged fever. Well, surprise surprise, she only has an ear infection. Her appt was at 140, I had an hours drive, she was only in the office about 10 minutes, and the rest of this time has been spent in the pharmacy. Long story short, I feel terrible, Lillian is in need of meds, and the pharmacy doesn't even have the courtesy to let me know I might need to come back in a while bc of problems with the script. GRRRRRRRRRRR Thanks CVS. A little communication goes a long way, too bad they didn't use any.

Monday, August 1, 2011

First Camping Trip

OH, no pictures of Baby Alli, please....

Mom, please pick me up, I don't want to walk in the lake...

Higher Daddy...

Wait, wait, get my good side...

Where do I start with this tent??

Yeah, that's right, I like camping.

Lillian did GREAT on our weekend camping trip. Unfortunately, she has been sick ever since we got home. She started with a raging fever, then we discovered a running ear, and later today we've discovered a bloody ear. We are on 24 hours of relentless fever. It was such a relaxing couple of days, and now back to reality with a vengence I'm feeling a little frustrated. I just HATE it when she is so sick. Hate it.