 |
| Lilyana with her cousin Caden |
Unfortunately for me, the ultrasound techs at ST.Joseph's hospital are professional and wouldn't tell me anything so I have to wait to hear from the pediatrician. I don't think things have changed much from what the techs were discussing amongst them selves. For those that do not know, Lily had an ultrasound on her hip 6 months ago which revealed she has mild hip dysplasia. This pretty much means her hip isn't developing correctly. There are things that can be done to help, so I will just have to wait and see what the pediatrician thinks the next step should be.
From the ultrasound sound room we made our way down stairs to the X ray department, where we waited in a "dressing room" more like a small bathroom with 2 stalls with curtains and waited as patiently as I could for about 30 min before somebody came in and got us for her X ray. I have to mention X rays are pretty cool, You can see so much of whats going on in the body. I have never had more then dental X rays done so it's kinda new to me. She has had other X rays during a few swallow studies and such, which I might add is pretty cool to watch as well. Not that its cool that we even had to do this but you gotta make the best outta a bad situation. Any who back on track, this fortunately did not take long at all and we were on our way to the main hospitals radiology department to pick up a disk that has images of her most recent MRI. From there we made our way back upstairs to have a urine culture done on Lily. This was an ordeal from hell.
Lily's doctor wrote the orders for her to be cathed because it's quick and fairly easy to do. The nurse tells me "Oh no I can't cath her, I'm gonna give you a cup." Excuse me a cup? Sometimes my filter doesn't work to well and I blurted out what the hell am I suppose to do with a cup and a 9 month old? She said I'm gonna give you a bag you place over her and then you pour it into the cup. Now I'm pissed. Why the hell did I bother to do this here at the HOSPITAL with fully capable nurses, when I could have went 10 minutes from my house to a lab where I would have been asked to do the same. But that is to be expected from a lab. I'm now thinking how am I going to be able to put this bag on correctly to get urine when I have watched nurse after nurse after nurse do this with no success. The nurses always manage to collect poop instead of pee. So instead of driving 45 min home and 45 min back to drop the urine off I decided to "bag" her in the car and drop off her MRI disk at the genetics office and hope she peed enough by then! So now I'm in the hospital parking garage in the backseat of my car placing a bag over my daughters you know what. We made our way to another part of Tampa to drop off the disk. When I got back to the car I checked her to see how much she had peed by now, thank goodness I checked when I did b/c the bag was starting to leak. Thankfully she peed enough for me to get the bag off her and dump it in the cup. We make our way back to the hospital I drop it off and head home. Now it's the waiting game. I hate waiting for doctors to call, I'm not a very patience person so this tends to be torture to me.
This morning (Tuesday) I get a call from her doctors office about the urine, I have to say I panicked a little thinking she has a UTI. Well the nurse tells me I dropped her urine off without labeling it, therefore, it wasn't accepted and that I needed to go back and do it again. Are you kidding me! I have to do this again?! I dropped it off with all her paper work in the same bag the nurse gave me and she never once mentioned I needed to write her name on the cup. I guess I should have known this but, I didn't think about it. The nurse looked at it when I handed it to her and she didn't say anything. Thanks a lot lady. So today I will be dragging Lily out in this horrible weather to do this all over again. Nothing can ever just be easy can it?
On a lighter note, Lilyana had physical therapy today. It went really well. Lilyana is starting to do way more then she could just a few months ago. She isn't doing anything on her own yet but, she is getting there and it's so exciting. Her therapist told me she is ready to start to work on more movement things, which in the Lissencephaly world is huge. Just imagine how excited you get when your typical baby starts to do something, the joy I feel when my atypical baby does stuff is overwhelming. She is working on rolling over and she tries so hard that she cries when she can't b/c she is so frustrated. Which really is a good thing because it's motivation. She can sit up for about a little over a min on her own or with very little support. While on her tummy, she started moving her legs under her belly which is where the crawl starts. To watch her do this and her therapist get extremely excited brought tears to my eyes this morning. It just goes to show her brain does function and she does have thoughts just not in typical way. Lilyana just functions in her own way.
