Womanhood hit her like a ton of bricks!!! Guest Post by Christine

Our friends, Christine and Kaetlyn, have been missing from riding lessons the past couple of weeks.  I received this update from Christine this morning with permission to share all she has been going through lately.  Kaetlyn has similar disabilities to Riley, as you have gatherered already she now has some added issues to deal with lately.  I greatly appreciate Christine's willingness to share their past couple of weeks.  Stacie

It has been a crazy month...(some of the days/times run together in my mind, but I'll do my best to explain). Kaetlyn's journey into womanhood...

After Kaet got over the pneumonia, she was having difficulties that I could not figure out, so out of deductive reasoning, I decided to take her to the Gynecologist. (behavior seemed a bit cyclic) The Doctor did an ultra sound to be sure there was nothing obvious wrong that could be preventing her from getting her period as developmentally all indicated she should have or should start any time. All turned out "normal," but we decided to start her on birth control to help with the hormones....

About one week later we were AGAIN at a loss of the extreme "behaviors" we were seeing. This time I took her to her pediatrician. She did a standard exam and could see nothing that could be distressing her :(  By this time, I was at my whits end...I all but begged her to start from head to toe and give her any and every test imaginable. I think she understood my desperation at that point. She agreed to start with blood labs, and urinanalysis and strangely decided to do a STREP test. We started with the STREP test and while it was "processing" drew the blood work...before we started the catheterization to get her urine, the Doctor decided to review the STREP results and would you believe it....POSITIVE for STREP! Thank God we got that result BEFORE doing the catheterization! Rx for antibiotics and a few days rest we were on our way! ...

2 days later I get a call from the teacher that Kaet had a GREAT day :), but my "little girl" had become a "little woman" YEP, the birth control/hormones had apparently given her the "push" to start her period. That wasn't too bad that weekend we took it easy and stayed close to home since I had no clue what to expect....then came Monday. 

I sent her off to school; (she did well all weekend) I had no reason to believe it would be anything but a good day. Boy was I wrong. The phone calls from the teacher began almost immediately upon her arrival to school. Kaet was very distressed/unhappy. We kept in contact for most of the day and the teacher tried everything she could to make her comfortable. The teacher did not call much in the afternoon, so I thought things got better. When I picked her up at dismissal to take her to equestrian, I could see that things were still not good. I cancelled therapy and took her home hoping to get her comfortable in her own space....the night was HORRIBLE! Kaet cried and screamed no matter what I did. I even giving her pain meds and all her regular PM meds did not help relax her! :( It was like something was inside her nagging and irritating her...

The next day I kept her home and called the pediatrician yet again; begging her to help me. She thought for a bit and decided she was going to call Kaet's gynecologist and discuss the situation. No more than 10 minutes later the pediatrian called me back and said the Gynecologist would like to see her ASAP for another ultra sound. I got Kaet loaded into the car and drove straight there. By this time Kaet was a lot calmer than the day/night prior, but I still wanted to do all I could to get to the bottom of all this. The ultra sound tech did the scan and took a few shots of some areas and then sent us to wait for the Doctor to see the results...before the Doctor even walked into the room I could hear her outside the door saying, "I would be in pain if I had that!" - apparently she was speaking to an intern. She came into the room and explained to me that Kaet had "free fluid" in her pelvis (could be the result of a ruptured ovarian cyst). This could take a few weeks for the body to absorb the fluid and during that time Kaet could still be in a lot of discomfort! 

OMG! ...there was no way I could go through a couple weeks of what I experienced the day prior!!!! 

Kaetlyn above with her mom, Christine, graduates 8th grade last week.

She told me she was going to call the pediatrician and discuss the results to see what she thought (apparently there is a surgical procedure to remove the fluid if we felt we needed to). After talking to the pediatrician, they decided to send her for a CT scan to see if there was anything else they could not see happening. (apparently free fluid can also be indicative of appendicitis). 

Off to the ER we went. Kaet at this point seemed to be getting better and I even debated in my mind whether it was worth all this while we were waiting, but since I wanted answers and Kaet can't talk to me I felt it best to go on...

We started yet again with the blood test and urine test (what an "adventure" it was to get her cathed for the urine!). Then we needed to give her some contrast to drink in preparation for the CT scan. Now, of course we know that Kaet aspirates when she drinks, so we couldn't give it to her that way. feeding tube time! (NOT) I didn't have the adapter for the button to give her the liquid. The hospital had them, but of course not for Kaetlyn's :( I had to call my husband and have him drive to the hospital with it; more waiting! Once we got it and the test done, it was near 8pm (long day). The test concluded the same as the ultrasound and "surprise" lots of fecal matter too. 

Now that is all over with, things are calming down around here, but poor Kaet! Womanhood hit her like a ton of bricks!!! 

Christine