Complacency, Chiari & Autism

Last night was Havens sleep study at Riley’s, I have seriously been dreading it for months. My sweet girl being Trapped in a hospital, wires upon wires covering her head and body, strange people touching her and messing with her all night long, especially since she just went through SO much with her MRI and EEG. I just knew it was gonna be a restless night for everyone. We checked in at 7:30 and Matt and I were prepared for the worst. Our tech was an Angel. Seriously a God send. She also has Chiari so she had a super soft spot for Haven. The entire time she was so calm, gentle, and sweet with her. She moved at Havens pace and didn’t rush anything, we talked greatly about her pain and issues from her Chiari and how she wished doctors would have found it younger so she could have had surgery and maybe her quality of life now would be different. For years they mistaked her Chiari for fibromyalgia because her pain was chronic and so inntense. Now she’s stuck in the never ending cycle of pain management. The more I learn about Chiari and the issues it causes the more it clicks with Haven and many of her issues. The thought of her being in such awful pain her whole life and me not knowing absolutely breaks my heart. I haven’t cried while blogging in a minute but the tears are flowing without end today. Last night tugged at my heart so much more than I expected. Haven did great, Matt and I were literally in awe at how well she did being hooked up to everything and constantly touched by someone new. I am so relieved it wasnt a nightmare like we were expecting but at the same time it hurt. I fear Haven is becoming complacent with the non stop doctor and specialist visits, poking and prodding, and traumatic experiences. I fear she thinks momma is the bad guy for always dragging her to these things. I fear that she is so used to the pain and hard times that she has stopped fighting it.  The fears these days are never ending.  

As many of you know we received some scary, unexpected news from Havens MRI. They did an MRI and EEG and honestly the EEG was our biggest concern. Havens Drs/therapists have been concerned with seizures, the last thing I was expecting was the results we got. 

At first I was terrified, our pediatrican said they thought Haven would need surgery. Brain surgery. Uh uh, no way, absa-freaking-lutely not. My sweet baby has already been through entirely too much In her short life, now this. It wasn’t happening. As I’ve familiarized myself more with her diagnosis and talked to her doctors and therapists it’s all starting to settle a little better. Still very fearful, but hopeful as well. 

I have had many people reach out to us (thank you all) as well as a few that have Chiari or know someone with it. Although I think most come from a place of good intent I can’t help but say this, Be cautious with your words, advice, and experiences. Your experience is not ours. Your aunt, uncles, sisters experience is not ours. Just like with Autism, with Chiari everyone’s case is different. Your pain, symptoms, and problems are not parallel with Havens. You do not wear an Autism diagnosis. You have not spent the last year of your life Going from Doctor to Doctor and therapy to therapy looking for answers. Trying to figure out why one day your once sweet and happy, thriving baby woke up slowly deteriorating in the mind, body, and soul. For us this may be our missing piece of Havens puzzle, the cause of so many of her issues, the answer to so many of our prayers. Our glimmer of hope. Many of the symptoms of Chiari overlap with those of Autism. Autism is such a broad spectrum, and with Havens lack of speech and being able to tell us what’s hurting or bothering her it is difficult to decipher what issues may be caused by Chiari or if it stems from her Autism. I have been in touch with a couple parents of children with Chiari and Autism and they have said their children were totally different after surgery. Not all of their issues disappeared overnight obviously but the good days greatly outnumbered the bad now. If we can give Haven that chance, the opportunity at semi-normal, pain free life, why wouldn’t we? Havens Doctors and therapists are hopeful that this could be her shot. I’m going to attempt to put my long list of fears and concerns on the back burner and instead hold on to that hope. If you are in our village I ask you do the same. As always I will keep everyone updated on our journey, testing and appointments. Thanks for following along. 
xoxo Taylor 

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