Eva's shower

First of all I want to recognize my wonderful big sister (and her hubby who has always worked as her side kick in party planning) Cata and my best friend Siovhan. While Siovhan was taking some time off of work to come to Tucson from Seattle, she also took time to help get Eva's shower together as well as hosting all the games for the party. I know that time is precious and my very busy friend, mother of 2 and a lawyer with a new practice took some of that precious time and dedicated to Eva and I, we are so grateful! Siovhan did not work alone, as a matter of fact she worked as the "assistant/co-party planner" to my amazing big sister, Cata! Words can not express how appreciative and grateful Jose and I are to my sister. Most of you that know my sister know how amazing she is, she is one of the greatest examples of a mother, wife, sister and daughter. She is too modest and will probably be embarrassed for what I'm saying and for what I'm about to say but...too bad big sis! This last January, my sister (who has a very demanding job and busy family life) along with my brother Gerry (who equally has a very demanding job and busy family life) came to be with Jose and I before Eva was born. They literally got here and got to work, they cleaned, and cooked and shopped and took advantage of every minute they were here before our Evita was born. My sister Cata worked so hard to make our home ready for Eva, not knowing if she was coming home with us or not, she worked diligently! Those days before Eva was born were hard. They were full of anticipation, fear, hope and joy. I have to admit, I'm not the greatest at showing some of my emotions but it helped to have my family here to cry on there shoulders and to share my desires for my daughter. My brother and my sister really took care of Jose and I, we literally did not have to lift a finger, I can't tell you what that meant to us! In true "Cata" fashion, she did the same with Eva's shower. I commented to her one day on the phone that I was so proud of Eva and her turning 6 months, how nice it would be to have a shower. And like that my sister said, I want to help...what Cata says, Cata does, she said, "I don't think you should throw yourself a shower". As ambitious as I could be, I knew I could not do this from Utah and with our limited resources. I can not tell you how demanding both Siovhan and Cata's lives are, they both are mothers and very dedicated mothers might I add, they work full-time in very demanding careers and are dedicated to extended family (considering that they are both the oldest daughters in there families). The shower was just beautiful and I couldn't have imagined anything better than it was.

I do want to say that I have two other sisters and two brothers as well and to quite honestly they are equally giving and supportive. I remember when I was younger, I hated my birth order, I felt (as I'm sure most middle children feel) kind of forgotten. Some of you may never believe this but I was the quieter child, I kind of kept out of the way and probably whined about how I was ignored...LOL! But I can tell you now that, I am so grateful for my birth order, it is through the experiences of my siblings that I am the person I am. That I understand things the way that I do and that I know the things that I know. Because of my sisters' and brothers', marriages, parenting and life management skills I have real life advisors. I was the only one that had not had children (and boy did I wait long enough for it!). So I spent a good part of my adult life, up to now, just observing all of them.

Anyway, back to the shower. It was so touching to see good friends, especially those we do not get to see often at all or enough. I saw family that I haven't seen in years and it meant so much to me that they could all meet Eva. My wonderful friend, Maribel, that I have known since 3rd grade, made Eva a beautiful book of pictures of the shower that she gave us the next day before we headed back to Utah. It was so great to be able to show these pictures to Jose when we got back. It was so thoughtful. To be honest I wish I could just name every single person that was there and how appreciative we were for you to be there with us. But, I am also grateful for everyone that couldn't come and that sent us well wishes. In reality I just can't leave anyone out, everyone that just thinks of us or has us in there prayers we are grateful for, it was icing on the cake to be in Tucson and visit with old friends and family. Everyone's generous nature was more than I could have ever expected. Because of our generous and loving family and friends we are able to get Eva everything she needs, its all hers. No more borrowed items (which we were equally grateful for) as a matter of fact, Eva will be the one to lend her stuff, hopefully to her future brothers and sisters. I know that we will cherish and care for all the items that we were able to purchase because of everyone's generosity.

On a side note: Our trip was interesting. Eva and I got into town on a Sunday evening, I was worn out and figured it was a long trip. We had dinner with my sister Cata, who made an amazing lasagna dinner. We hung out with my brother Gerry and Isaiah. I was not feeling good but figured again, that I was just tired from the trip. Well, it ended up I got the flu the whole week I was in Arizona. Eva and I were bed-ridden for the whole week. I didn't get to visit anyone or even leave the house until Friday night when I stopped by to my cousin's birthday party for about an hour and then went back home. My poor little Eva got a little sick too and congested. We felt better for the party but needed to still rest for our flight back to Utah. Can you believe it? I haven't been home for that long in a year and I was looking forward to my little girl seeing where momma grew up! Well maybe next time! When daddy picked us up from the airport and on our way back to Provo a tree on the freeway hit our car and smashed our hood and left a dent! What luck! Anyway, we missed Daddy so much and because we were not feeling well all week, hardly spoke to him via Skype. We are so happy to be home with Jose and to be a threesome again!

I have so much more updates about what's going on with us here in Provo...I'll be back!

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!!

6 months...are you serious?!!?

Well, our angel is 6 months old today! I had to, had to post today, I couldn't miss sharing how happy we are that Eva is 6 months old! I have otherwise been a slacker in the blogging department.

We have had a great summer thus far! I was worried about the summer, considering we don't have air conditioning and just a swamp cooler, the rooms do have fans but no vents for the cooler to hit the other rooms. Eva gets so hot and uncomfortable and the seizures just come and come and come. But I really think Eva has some help upstairs because it has been cool when we've wanted to go on outings and/or overcast when we've had to spend time outside for whatever reason. I have so many pictures to post and so much to share about our summer. We did Father's Day in Arizona, my cousin Ray with his very large family came out and they got to visit with Eva, my cousin Armando was in Provo with his family for Jr. Olympics Regionals and they got to meet Eva, my two nieces, Mireya and Yarelli came out to spend part of there summer with us and we had so much fun! Eva and I even made it out to Vegas...can you believe it!

Well, I will elaborate in another post but for now, Jose and I want to share how very grateful we are for our little angel. We are so grateful for how she has changed us, on how she continues to change us, we try to be the best us we can be so that we can be a forever family. I am so grateful for this time right now in our lives! I want to never forget what this feels like!

Heaven's Very Special Children

Tonight (this morning...whatever time it is) I spent time searching on the web for Holoprosencephaly.  It's been quite awhile since I've looked on the web for other parents, families that are dealing with this same condition, as well as any new information regarding this diagnosis.  I had to stop looking, it can be an obsession if you let it, and spending time with my daughter has sort of taken precedence.  Sometimes its good to just step away from the diagnosis and just enjoy the person.  However, tonight,  I was inspired, alarmed and touched at the other blogs I found (which you can check out here on my page, to the right of my posts).  So many parents that received the same heart-wrenching news about their children and so many strong and positive stories about how they are dealing with pregnancy, delivery, saying hello and saying good-bye.  In so many ways I feel so lucky to be in Our situation.  I try to make our life as normal, as normal can be, sometimes it back fires on me.  When Eva has a bad day or week, I guess I am again reminded of how not "normal" our situation is and how taxing it can be.  Nonetheless, I try to keep the normality in our home as best as possible.  Eva is approaching 5 months.  Can you believe it?  Before she was born, I spent time not setting up her nursery or having baby showers but planning her funeral.  I had to stop, I just couldn't.  I just didn't feel like that was what I needed to do.  I was scared and nervous on the day she was born, but I knew with all of my heart that I would meet my baby girl and all that funeral planning needed to take a backseat.  I still have "the planning" in the back of my mind.  The planning to say good-bye and all the other details that go into it.  I sincerely do not believe that her time is near, I may be naive but I know Eva will let me know when.

For now, she's eating, she's growing (not at the same rate as baby's her age) and we are living with our situation.  She continues to have seizures on a daily, hourly basis.  But Eva is strong and she is doing well with the hand dealt to her.  I am so proud of her.  She does not complain, she preserviers.  Only she knows how much she can handle, we just comfort and love her through it.

I have to say, in reading about so many parents that have children with special needs I am amazed at how they perservier!  They do not put limitations on their children, they give them opportunity and in return these little ones thrive, at times they don't even know they have limits.  These are very special parents and very special children, truly inspirational!  

I read this poem on someone else's blog and googled it, I have posted it here to share with all of you!  It is a beautiful poem that I hope all of you will share with parents that you know care for a special needs child.  Thank you all for your constant love and support, thank you for your thoughts and prayers!  Although, we are far away from "home" please know that Jose, Eva, Jeter and I know how very NOT alone we are.  Because of our church members, friends, neighbors etc...we are trying to lead the most "normal" life we can.  And I am so grateful for all of you that aid us in accomplishing this difficult task.

HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth, 

It was time again for another birth.

Said the angels to the Lord above-

"this special child will need much love.

Her progress may be very slow, 

Accomplishments she may not show.

And she'll require extra care, 

From the folks she meets down there.

She may not run or laugh or play, 

Her thoughts may seem quite far away.

So many times she will be labeled, 

different, helpless, and disabled.

So, let's be careful where she's sent.

We want her life to be content.

Please, Lord, find the parents who, 

Will do a special job for you.

They will not realize right away, 

The leading role they are asked to play.

But with this child sent from above, 

Comes stronger faith, and richer love.

And soon they'll know the privilege given, 

In caring for their gift from Heaven.

Their precious charge, so meek and mild,

Is HEAVEN'S VERY SPECIAL CHILD."

by Edna Massionilla

Dec, 1981

The Optomist - newsletter for PROUD

Parents Regional Outreach for Understanding Down's Inc.

The Binky, Pt 2

I can't believe our little one is 4 months old today!!  She is a blessing everyday she is with us.  She is an amazing teacher of all things and yet so tiny.  I love this little video, although it does not ring true for some of the days, it certainly does help to have reinforcements! 

The Binky, pt 1

You have to check out Binky, Pt 1 and then Binky, Pt 2!  She is so cute and she loves her Binky, it is mom's friend!