Seizures. UGH. Was this always a blog about Madie and her seizures and how my family dealt with raising a special needs child? Some are strong enough to stick together but some are not...some just cant handle it. Its not easy but with lots of love nothing is impossible! That is how I felt anyway....Seizures are still a part of Madies life..lately they have really sucked. Five big dozies last month and two already this month. Top that with a cold and that she has to go back and forth from home to dads... a lot of running around when she may just want to be on her blanket with her added blankets in her jammies... :( I may just keep her home on Monday. I want to coddle her and wrap her in warmth. Its the only way I can describe.. Wrap her in warmth. Kisses and giggles. The nights when I give her a nice bath and get her in her warm jammies and we get all comfy on the blankets are the best.
I called Neurology and played phone tag...suggesting maybe we get some blood work done or make an appointment with the nutritionist to get her diet tinkered with...She is growing and maybe just maybe the diet needs a tinker?? Meds have been the same for a long time.. The Suggestion? Increase the meds. MORE meds.. I just dunno...SOmetimes I feel like just another number at the doctors... I talked to a nurse I did not know and had to explain things to her when there are two other nurses who KNOW me....
Maybe I need to step out of my comfort zone and say no. She had big bad seizures even when she was JUST on the med and NOT on the diet....The diet came along and her seizures and alertness got a lot better. I don't think adding MORE med is the solution.. No one will convince me that all these meds along side of the Infantile Spasms she had when she was a baby have not affected her development. A doped up kiddo who sleeps a lot but is not having seizures to a kiddo who once in a while has a bad seizure but is ALIVE?? But seizures have sucked lately I just don't know why. Growth Spurt? Feeling Sick? Over stimulated? Overtired? WHO KNOWS...
Oh my Sweet Girl...I get so scared that she will regress.....ok she is not turning cartwheels but she is Madie...Her own little quarks. Just scary I guess.
And seven years and no one still knows why she has seizures and why she is so disabled physically and mentally...SEVEN years. Push for Genetic tests and insurance puts up fights to pay and doctors say "nah, that's not her issue" ... Lennox Gastaut Syndrome...West Syndrome..... to me disorders that are a name for "sorry your kid has seizures and we don't know why so this is what its called" Pisses me off. I hate when doctor writes that on her file.... Its Bullshit.
I become angry when I imagine doing all this when she gets older...will she walk? will she always be in diapers? She will be super heavy whos going to carry her? Will she always be on Sippy Cups? Is her room going to look like a hospital room with harnesses and lifts? What apt will let ya put that stuff in there? How will I be able to afford a larger SUV for her chair and things?
People tell me I am great mom...if they knew how much I have cried....or nights with a bottle of wine...if they knew just how GREAT it felt to let my family break apart when I wanted it to be mended so terribly... That I am a good person and I love...that I am not crazy. (well sometimes) I was PISSED and SCARED and I let those feelings get the best of me ALOT.
Yeah I know life was hard...I know it...a child like Madie takes a toll on anyone really. She is so amazing and teaches me each day. I am blessed to have her each day to hear her giggle and kiss her little feet and get her lovies which she has become very good at hugs. She continues to be a joy to whomever meets her. Even some stores I shop at remember her and ask where she is when I come in. She is loved. I AM Loved. The future is scary and at times looks to be very lonely but each day the sun comes out and each day my sweet girl is sitting her bed waiting for me to get her up for the day with a big smile and happy noises I count my blessings. One at a time.
Gotta go get some errands done now...Its been requested that I make an Apple Crumb pie for Turkey Day. Madie and I are going to Jersey to see my side of the family. The vanNoord clan is going on a trip and wont be home! lol Who chooses a vacation over Turkey?? LOL I would I guess. hee hee Gotta love them to bits.