Sophies Story

Hey Yall! I am Heather, Mommy blogger at My Quest for Sanity. I also list the contests here on MomDot for you on Mondays! I would like to introduce you all to my daughter,Sophie. Sophie is an outgoing, mischievous 2 and a half year old who loves to sing and dance.

Sophie was born at 36wks on March 25,2006. perfectly healthy beautiful baby girl weighing in at 7lb 1oz.

It wasn’t until Sophie was 6 months old  that she started having health problems. The start of the problems were frequent urinary tract infections which required hospitalization due to the high fevers that accompanied the infection. This along with severe gastric reflux resulted in many of sleepless nights.

Sophie continued to get UTI’s every 3 weeks until she was about a year and a half and we discovered through some tests that the infections were caused due to an allergy to apple. Funny how something so easily fixable was such a horrible experience.

In July of 2007 we were referred by Sophie’s pediatrician to see a neurologist concerning a significant amount of delay in her development. Two weeks later she was seen by the neurologist who,after examining her, prompted to do an MRI to check for hydrocephalus(Water on the brain) The MRI was negative for hydrocephalus but it did show that she had a condition which is called periventricular leukomalacia(Pvl is a form of congenital brain damage). We were referred to the local early intervention program here in St Louis and she began occupational and physical therapies shortly after.

Between August of 2007 and October of 2007, Sophia received special braces on her feet to correct a double internal tibial torsion and she also started having what we then called “episodes” a few times a week.

Through many Hour-long and overnight EEGs we discovered in January of 2008 that Sophie had epilepsy and her daytime “episodes” were petite mal seizures and her nighttime “episodes” were myoclonic seizures. She was placed on topamax for seizure control.

In January of 2008 Sophie started getting frequent ear infections(She was getting them every other week) and finally in July her Pediatrician agreed,after 13 ear infections in 7 months, that it was time for ear tubes. She went and had the tubes put in and has only had 2 infections since.

In August of this year Sophie was placed in the hospital for a week long seizure monitoring. At the end of the week the doctors had enough video footage and EEG readings that they were able to tell that her seizures are caused from a sleeping disorder and since the topamax is a sedative for her they took her off of it and wanted to wait a couple of weeks to see how she did before they started a new medication. Here we are headed into October and I am happy to say that Sophie is still medication free and her seizures are very few. She is also sleeping better!

July, August and September have been trying months for us. We started to notice that she was constantly sick. Whether it was strep throat, a cold or a stomach virus, it was constant. She was at the pediatrician or the emergency room literally once a week. Finally, earlier this month I took Sophie to the Emergency room BC she was in a lot of pain and kept screaming that her head hurt. An MRI was done and showed no changes from the previous ones done. So, after a team of doctors came in and evaluated Sophie and after the evaluation and my answering about 500 questions they mentioned that they wanted to test her for Leukemia.

I think that it was right at that moment that my heart just broke in to a million pieces and the world seemed to stop. Leukemia? Cancer? My baby? They drew some blood and recommended Sophie to see a hematologist to have some blood counts done. The hematologist could not see Sophie for several months so the pediatrician ended up being the once to draw the labs. We got the results back fairly quickly and they showed that her platelet count was extremely low and her white cell count was elevated. We were then referred to an oncologist to have a bone marrow biopsy performed.

She had the biopsy taken from her hip this past Friday and should know the results any day now. The waiting is the absolute hardest.

The past 2 years of my life have been damn hard,but they have also made me a better person. Before Sophie was born the hardest thing I had to do during the week was deal with rude people at my job. Now my life is complete and utter chaos consisting of doctors appointments, therapy appointments and tests. And you know what? I wouldn’t trade it for anything.

Being the mom of a special needs child is the hardest thing I never thought I would do.  But, no matter how many of my days end with me lying on my bed and crying myself to sleep  and no matter how little of sleep I get at night I have been beyond blessed with a beautiful,smart and loving child. She is my entire heart and soul and I will continue to fight for her as long as I have to.

~ Heather