Help

 I really appreciate everyone who has reached out to me to offer to help.  I am completely overwhelmed and drowning in phone calls, emails, and therapy and specialists appointments. Lance is trying to help as much as possible, but he still has to work.  Here are some ways in which we could really use some help:

1.  I have someone working on this already, but if anyone has connections with someone at either the Brain Malformation Clinic in Boston (Specifically Dr. Poduri, but there are others familiar with PMG as well) or the Center for Integrative Brain Research in Seattle (Dr. Dobyns or Mirza) please let me know.  I would love a Telehealth consult or at least someone to look over Cora's MRI and give us more insight.  Our neurologist is great, but very unfamiliar with Cora's rare brain malformation and what it might mean.  I have her MRI scan on a CD I can mail and I have the report I can email (also an EEG if needed).

2. Our yard is a mess, I need a row of privacy trees planted and our garden beds weeded and mulched.  If someone could line up 3 estimates from landscapers I would be forever grateful (you can coordinate times with me, but we're pretty flexible). 

3. I really need some help researching best options for a new laptop for me.  I wasn't planning on buying one now, but I really need it for therapy appointments and research.  My Mac is 8 years old and really really slow.  I'm going to have to go with a PC because I don't want to invest in a Mac right now, but I want something that will last as long as possible.  I really don't need bells and whistles just something simple and somewhat affordable and long lasting.

4. Food is always welcome, though I know we're tricky with our gluten/dairy free diet. Encouraging texts and calls to check in with us have been so great and make us feel very loved and supported, so keep 'em coming.

In the future, I may need help researching options for different equipment/resources for Cora.  If that's something you'd be up for as needed please message me and I'll make a list so I know who I can contact! 

Also in the future, when we feel comfortable with playdates again I will definitely take ya'll up on your offers to watch my big kids.

Comments on my blog are for some reason coming up as anonymous, so if you don't want to be anonymous please contact me by phone or on facebook.  I don't have time to try and figure this out.

 Thank you all so so much!  

Cora Mae

In the back of my mind, I was aware that Cora wasn't developing like a typical baby. As a newborn she screamed for hours on end, she had an overactive startle reflex, and lacked the typical newborn hand grasping reflex.  It dawned on me at around 5 months that she wasn't really using her hands.  She would occasionally get them to her mouth, but it was never intentional or consistent.  She couldn't hold an object even if it was placed in her hand.  She was hitting most other milestones so I mostly brushed it off.  When she was around 6 months I decided to make a referral to Early Intervention and was told she didn't qualify, but that I needed to talk to my pediatrician about her stiffness.  The pediatrician seemed only mildly concerned and made a referral to Physical Therapy.

A week later we had a virtual evaluation with a PT.  I explained that my main concerns were her stiffness and wasn't using her arms and hands appropriately.  She saw my concerns and made note that her head control also wasn't where it should be.  In passing I mentioned to her that she also had a strange tremor in her foot.  The word "clonus" suddenly set off alarm bells in my head.  I remembered from my other kiddos experience in Early Intervention that clonus was a HUGE red flag for neurological issues (Caiah had very mild clonus at a much younger age, but it resolved).  It was like a puzzle had suddenly been completed in my head- the clonus, the stiffness, the delays, some missing and overactive reflexes she had previously had, and even her vision issues all sounded very much like some sort of neurological condition.  I immediately began researching Cerebral Palsy and felt like my world was caving in as Cora's symptoms fit the description to a T.

I decided to take Cora in person to the pediatrician a few weeks later and she was very concerned with her neurological issues (this was also when she mistakenly thought we might be dealing with Craniosynostosis).  She ordered an MRI and referred us to the neurologist.  We were very quickly able to get in with the Neurologist and she confirmed our suspicions that we were likely dealing with CP.  I wasn't aware at the time, but she did put a Cerebral Palsy diagnosis down in her chart. We initially told her we were not going to do the MRI as we didn't want to sedate Cora.  As the week went on she had some worsening nystagmus (a rapid darting of the eyes) and we were told to come in for an EEG.  We happened to get a call that day from Mission Children's to schedule the MRI and decided we would go ahead with it.  A few days later and an abnormal EEG report (no seizure activity) confirmed the necessity of an MRI.

On Thursday we went to Mission for her procedure and Cora was absolutely brilliant.  She didn't even cry when they stuck her for the IV and even managed a few smiles despite not having eaten all morning.  The MRI team was equally incredible and could not have been more helpful or kind. 

At the end of the day Friday we finally got the phone call from Cora's neurologist.  She said the MRI showed diffuse Polymicrogyria (PMG) and CP would be her secondary diagnosis. PMG is a congenital malformation of the brain that causes too many folds in the brain that are too close together.  90% of kids with Polymicrogyria will develop seizures in their lifetime.   Outcomes can vary drastically even with kids whose brains look identical.  Some kids with PMG never walk or talk and others are almost indistinguishable from typically developing kids.  Some have a shortened life span because of the severity of seizures or because of related breathing issues.

This is the first time in my life where I have ever been completely shocked and devastated by a diagnosis.  With all of my kids I researched extensively and the ADHD, ASD, ODD, Esotropia, and even CP were not a surprise to me when I heard a doctor utter the words.  I had never heard of PMG, even in my weeks of extensively researching CP.  I thought maybe the MRI would show evidence of a stroke, a brain bleed, or god forbid even some kind of cyst or tumor.  But a malformation of her brain never even crossed my mind.

I'm still drowning in the middle of the grieving process- the "why me's" and the "what if's" and the "if I had just's...".  I wonder if I'll spend the rest of my life caring for Cora or if she'll one day be able to be independent.  I often question wether or not I'm capable of handing this. I'm exhausted and overwhelmed and devastated. The big kids are struggling and acting out. It's been heartbreaking to try and explain Cora's diagnoses to them. We have a very, very long road ahead of us.