This was Eva before her visit with the Neurologist up at Primary Children's Hospital!Well, learning about Holoprosencephaly feels like a full-time job and my second job is learning about Alobar Holoprosencephaly! I joined the groups, I talk to so many parents and well sometimes my head is spinning. There is so much information, the problem is that every single child is so different. The common factor is the brain development, the thing that is different with each child is "the other problems", it could be digestive, sodium levels, diabetes, acid reflux, breathing, heart disease...the list goes on. Eva's is seizures. Eva has seizures all day long. She has tonic, clonic, tonic-clonic, galastic, partial, complex, silent, focal, she pretty much has a spectrum of seizures. As she turned 6 months I began to notice her seizure activity increase and some times they seemed stronger. Eva has not looked weak or like she is struggling. She seriously is handling it like a champ! She has a lot of her Abuelito Beto and Tio Beto in her; she just is a fighter and from what I can see she has a purpose and until her purpose is fulfilled she is not going anywhere. Although we do see how strong our daughter is, I do worry, I guess seizures can't be good or healthy. Hence, the request for a neurology consult.
Dr. James Bale...I loved him! He talked to me in an intelligent tone and level, but not over my head. He explained in detail her MRI her condition as he saw it and was very frank. I was so appreciative of someone who encouraged our learning as much as we could. I just didn't get this feeling from the specialist that I was dealing with when I was pregnant. Well we felt that what he had to say was good news!
Dr. Bale first of all explained to us that Eva actually does have a frontal lobe (we were previously told, prenatally and otherwise that she didn't). What this means is that she could very well be displaying emotion or consciously be reacting to things like kisses or tickling her feet!! We knew it!!! We just knew it!! It was so wonderful to here that we were not just making things up, we know our little one and we know she absolutely has a personality. Anyone that meets her can testify to that! We have good friends that have known Eva since she was born and they will sing to her and talk to her and I see her react!!!
One of my biggest concerns was that a doctor would medicate Eva for our sake and not hers. I'll explain...I know that it can wear a parent out to have a child that is so absolutely dependent on them or have special needs. I mean we all have heard jokes or made them ourselves about drugging a child to just keep them out of your hair. Although, I know most parents aren't serious about this, it does happen. I wanted to assure that Eva was being treated and not me or Jose, I wanted for her Dr. to know that I wanted my daughter just as she was, regardless of the obstacles. The second good news for us was that he was in agreement with us on this point exactly. He told us that he did not feel that the seizures were necessarily dangerous and that we could medicate with a seizure med (she is currently on Adivan/Lorazepam) or we could leave her on the same regiment she is on now. I guess it helped that I told him I understood that Eva would never be seizure free. We am not oblivious to that fact that our daughter's brain did not develop. It wasn't damaged or diseased it never developed. Because Jose and I understand what this means we don't expect a miracle drug to change who she is and frankly we know who she is and we can see her personality.
Now don't get me wrong, on my most difficult days I do want more. I want to hear her voice, I want to hear "Mamma" and "Pappa" some day. I want to see her crawl and walk and it hurts. But we do not let those days consume us. Jose and I talk about it and then we move on. Everyday we work to understand God's plan and everyday we thank Him for Eva and this family we have, Jose, Gabby, Eva and even Jeter. This is family is the most important thing in the world to me!
I discussed these things/feelings with the neurologist and I told him that we also were well aware of the circumstance we were in, he suggested a medication if we were interested and sent me home with information on it, Jose and I along with our hospice nurse, Margaret are coming to a decision. We will take things with Eva one day at a time! I am so grateful for the providers we had have thus far or since Eva was born. Jose and I have learned to pray for our physicians, we pray that they will have the wisdom, knowledge and humility to treat our daughter in the best possible manner.
To all that follow Eva and our little family, thank you for thinking of us! Thank you for loving Eva even from a far! I know she was meant to bless many lives not just Jose and I's, we will do our best to make sure as many people know Eva!
