Friday, January 9, 2015

*Trigger* Parenting After a Loss: Brooke's Spasms

I often say, "My losses have made me a better parent." All I mean by that is that I am a better parent than I would have been if I had never had a loss. Loss has taught me to cherish the little moments. Although I, like any parent, have moments of frustration, I often remind myself how much I would love to be able to go through these challenging "phases" with my precious lost children.

One area that I am struggling with is Fear. Anxiety has been a struggle of mine since before any loss. Everyday I work to keep these nagging feelings at bay, but there is one area of my life that I often let this anxiety sneak it's way back in. When my kids are sick, I often end up fearing for the worst, and today I am blogging in hopes that I getting some of my feelings out will help me relax a bit.

Our second rainbow baby Brooke is now 8 months old. After a the last few scary months of my pregnancy, she was born healthy and has been thriving and developing like a champ. I often feel like I am waiting for the next shoe to drop though. I have tried to turn those thoughts around by telling myself, "Even If...." and being sure to appreciate the happy times, but lately that has been hard because Brooke has been having these weird spasm movements, and I am so worried that it could be something serious.

I tried to tell myself that it might just be reflux or a reaction from the camera flash, or just normal sleepy baby stuff, and it likely is one of those harmless things. They kept happening, and I began to get worried, so I brought her to the pediatrician. She sent a referral to a neurologist, and we waited for a call back. It's been over a week now, and that has given me way to much time on my hands. She is now having these spasms a few times a day.

The internet is a blessing and a curse for a mother like me. It was with the use of the internet that I was able to reach the doctors in Chicago for a second opinion about Wyatt. The internet also provided me with some much needed support after losing him. It has also provided me with a place to blog about all this, so I am thankful. I have found some videos and articles about a rare disorder called infantile spasms. They say although these short spasms look harmless, they may actually be causing brain damage. The outlook is not good, and it is very important to get treatment as soon as possible. I also read that it is often overlooked because it's rare and doesn't look serious.

Her little twitches are likely nothing to worry about. Infantile Spasms are really rare, but from my experiences, statistics mean nothing when you are the statistic, and I have been down that road too many times. At this point we have an appointment for an EEG in Early February. Her pediatrician's office has sent a second referral over to see if they can get the appointment moved up a bit. We are also on the cancellation list.

For now I am supposed to try and get videos to show the doctors and just wait. I can be pretty patient about paint messes, tantrums or other silly kid drama, but when it comes to my baby being sick, I am having a really hard time just sitting around waiting and wondering. I am going to do my best to enjoy her cute smiles and fun personality as I wait hoping they will move her appointment for us.

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