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Thursday, August 22, 2013

1 year post discharge follow up- Miss Julia

Sitting here writing this post seems a bit surreal to me. It is hard to believe on August 22, 2012 my sweet baby girl and I were getting discharged from AI Dupont Hospital for Children.  Being a mother prepares you for many things, but I do not think it ever truly prepares you for your child being admitted to the hospital. I do not think you every truly get what that feels like unless you have been in the situation.  Having one child who has a rare medical condition has made me more aware of things but, being hospitalized was unchartered territory for me. I am also amazed just like her birth I remember clearly every moment of our stay at AI. I remember how scared I was and I also remember how I needed to be strong for my baby girl.  We went home after a week stay with a diagnosis of Meningoencephalitis and post viral cerebellar ataxia. Ataxia was familiar to me however, I truly did not know what encephalitis meant or what it meant for Julia.

Yesterday, we went to our one year follow up with Dr. Bodak.  As any mother would be I was apprehensive of what this appointment would bring us.  Julia has recovered remarkably well in a year.  When she was first admitted to AI she lost everything a typical 12 month old child could do.  Julia had to relearn head control, how to sit, how to sit unsupported, how to crawl, how to pull to stand, and cruise. Julia had to regain fine motor skills such as picking up small objects and even her pincer grasp.  I am happy to report Julia has in fact regained those skills.  Julia has regained those skills and is cruising and climbing everywhere. Julia has taken independent steps in the pool and has stood independent for a few seconds.  She is starting to talk more and really, really wanting to walk. Right now Julia is walking holding our hands, cruising the furniture/walls, or using a baby doll stroller or shopping cart. She has even started to bear crawl, which is quite a talent. I went to our appointment with Dr. Bodak to report these amazing things, but I knew we still have things to work on. Her neurologist was quite pleased with her progress, but she told me she still has some time to recover. It could take many years. We just don't know how long because the brain is an amazing thing. Julia still struggles with balance, which seems to be residual from what part of her brain was infected by the virus.   She feels Julia will be able to walk on her own, however will more than likely need a cane or a cool walker like her brother before she steps out on her own.  What I did not expect to hear is just how serious this particular infection was. I think the doctors spared me the worry considering we have experienced some trying times already.  Now, that we are a year out I think they are comfortable in letting me know just how lucky we are.  You know what we are lucky we still have our beautiful baby girl to wake up to every day.  The other news is Julia's MRI is normal now and is showing re myelination. This is a huge win.  We wanted to see this happening.  However, Julia's EEG's are still a bit abnormal.  Little did I know she experienced a seizure before we got to the hospital a year ago. So, I went home yesterday with a prescription for Clonazepam. Now, this mom needs to learn about epilepsy and educate everyone that watches our baby girl.  We also were told again no vaccines for Julia except for the flu vaccine. I use to think that it was crazy to not give vaccines. Now, I understand why parents make those choices. I won't get into a vaccine debate, but I will say I apologize for misjudging those who made the difficult choices for their children.  Overall, this appointment was good news and we still have a road ahead. Where it will lead is Julia's destiny.

I am glad I waited a day to write this update. I had some mixed feelings about yesterday. I wanted to hear from our doctor those magic words that she is 100% recovered that I didn't have to worry as much about Julia.  However, those worries will still be there because I am a mom.  Every parent worries about their children no matter what the situation is.  I just worry a bit more because of the fragile medical conditions my children carry. I also had a brief moment of is this really happening again? I quickly reminded myself not to let myself feel angry about this. After all she is my beautiful, sassy, independent Julia.  If anything this makes me more grounded. More understanding of what is important in life. I understand that it is okay to slow down and jump in water puddles even if we ruin our shoes. I understand that if my house is not as perfect as I like that is okay.  I understand that waking up to hugs and I love you is pure joy.  I even understand those moments when both my children are yelling mommy and asking to be held that is okay.  I also understand that even if I get frustrated at insurance companies and spending my time in therapy that is okay too. I also am glad that I share our story because I hope it inspires just one person, I hope it educates even one person, and I hope that more than ever it reminds everyone that everyone has uniqueness.

I want to end my post about Julia and how she brightens up our lives.

  • Her love of sunglasses, shoes, nail polish, pink, babies, and dogs.
  • Her total admiration of Hayden and the way she says his name.
  • The way she says daddy and just melts in his lap even for five minutes (if we are lucky :) )
  • The way she makes barking dog noises when she sees our dogs or any dog.
  • The fact that she wants to be such a big girl and do everything on her own.
  • The way she climbs on everything which includes our baby gates.
  • Her silly personality.
  • Her tantrums because she doesn't get her way.
  • That she is girly but will play with race cars with her brother.
  • The way she decides to stand up in shopping cart seats.
  • The fact that she refuses to sit in a high chair any longer at restaurants.
  • I love when she calls her bike her bite.
  • The way she needs her mommy even if I want a minute to myself. I still love this.
  • Her determination.
  • Her independence.
  • Her innocence.
If you made it to the end of this post, thank you! Thank you for your interest in our amazing children.

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