Tuesday, August 11, 2009

Neuro Appointment

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!


Jose M. Pena, M.D.????

Jose has been busy this summer with summer school and research, this is him in the lab working on one of his antioxidant projects...doesn't he look good in a white coat...LOL!!


This summer Jose has had the opportunity to work in a cancer research lab on campus, he feels so privilege to be working in this lab with a great professor and amazing labbies. The research he is doing compensates for having to take summer school classes...physics...ahhhhhh!!! He will be taking Princeton Review in January/February so he could take the MCAT in May. We have been so anxious to get to this point but at the same time it has been kind of nerve wrecking to think, in about a year we will know what medical school he got into and where our next move will be. Crazy!! Life goes by not by time but by series of events. I can pretty much look back at my life and I can go back to my early childhood tracing series of events! I love that!

I am so proud of my husband, he is intelligent, hardworking, generous, talented, caring and thoughtful! This path he chose is not an easy one, I admire him because he doesn't look for easy. Its funny, in choosing pre-med you have to remain confident that you will some day reach your goal of being a physician but you also have to remain open to never getting there. There are so many smart, talented individuals graduating college every year and applying to medical school. The competition is fierce, the tuition is expensive and the time you dedicate can threaten family relationships...why in the heck would you do it!?! Service...all for service. Not that I would compare anyone to the Savior I mean He was perfect but my husband tries to exemplify the Savior in his choices and I am so proud of him. He wants to serve, how could I not support him, how could I not stand by him. It fills my heart to know how hard he works, he doesn't complain or grip. (maybe some whining when it comes to anything chemistry, physics...LOL!) Sometimes I think...10 more years of school...oh my...I better really like student life. But Jose has given me more than anyone I have ever met, I'm happy! I have a husband who treats me like a queen and a daughter who is perfect and I have the knowledge that the family we form will be a forever family. He loves our Savior and because of that I know no matter what happens, no matter what path we stay on he will always be happy, we will always be happy. My husband is such a great example to me! I know that the trials we face now are preparing us to handle life later with a greater handle on problems. I love you Jose! I'm grateful for you! I am so happy to spend eternity with you!

BTW- I could get all mushy cause he never reads our blog...he's pre-med remember, if its not science he ain't going there! He would be soooo embarrassed! Ah...what's blogging for if not to proclaim to the world...Your Opinion!!