"...go forth, multiply and replenish the earth..."

So Jose and I are trying to do our part and obey the Lord's commandment to multiply and replenish...lol! So here we are just shy of our two year wedding anniversary and baby #2 will be joining us next year, our due date is June 23rd. Its funny to think that last year I found myself pregnant at Christmastime and here at Christmastime again I find myself pregnant. I thought I would share with you a picture of our newest little miracle. Without a doubt we know that Eva will be the best big sister EVER!

There are times I find myself thinking, "are you crazy, Eva has special needs, its just plain crazy to have another child at this time!" or "You guys are struggling to get by and Jose still has so much school left" But they are just moments of madness, the real madness would be to deny what Jose and I already prayed about, a family. We have received constant reassurance from our Heavenly Father that this is the right time to have our family. We are so excited and anxious about what lies ahead for our little family.

So a little Eva update, she has been strong for the most part and has had some off days. This last year Eva has dealt with 3 colds, like a champ (as my oldest brother likes to call her). Eva's seizures continue on a daily basis, at this point, if she is awake she is seizing. Last year, when Eva was born, she had a problem regulating her temperature, she would get so hot. This winter Eva is having the other problem of regulating her temperature so she gets so cold. Our wonderful hospice nurse, and one of the most important people in our lives, Margaret suggested a heating pad for Eva to sleep on to help bring up her core temp. It has worked beautifully, we only have to keep it on for an hour or so. Her eating is still not the best, she is eating about the same total amount of food for the last 9 months. We have tried to increase her intake but she can't tolerate it. We have considered meeting with a general surgeon for a consultation on Eva's G-tube, however, we keep pushing back the date, it just doesn't seem like the right time yet. Eva is as gorgeous as ever and we are enjoying our time with her. This picture is of Eva wearing her BYU onsie.

As for Jose and I update. Well Jose continues to work on school and all the preparations for applying to medical school. It seemed like we waited forever for this point but now that we are just about here, it seems it came too suddenly. The end of the year signifies a lot of upcoming changes for us. At the end of this week we move into our second marital home, new neighbors, new landlord...YaY!! A baby to prepare for this summer! Jose applying, interviewing and (keep him in your prayers) getting an acceptance letter into medical school! And finally our little girl turning a year! Regretfully, I have not been the best blogger but I am grateful for this little bit of writing I have gotten to do this past year. I believe blogging has helped me far more than it may help anyone that may come across our page.

I have to say that every time I write and reflect on this page, as well as in my journal, I am able to recognize all the blessing in mine and my family's lives. Jose and I are very lucky to have each other, we are a unit and work together yet we can depend on the other to do his/her part in this unit independently. We are blessed to have an angel on earth, in the form of a daughter, who teaches everyday what is truly important. We are so blessed to have family and friends that continue to love and support us every single step along this very long journey. As far away from our family as we are, Jose and I do not feel alone...except for those emotional days (due to pregnancy) that I want to be held by my mom, we know that we will never be left alone, neither by our families or by our Father in Heaven or our Savior Jesus Christ!

We hope you all have a very Merry Christmas!!!!

Los Peña

9 months and more milestones

Well, here come the holidays! Tis the season for firsts. Today is Halloween and it is Eva's very first Halloween, we are so excited to put her costume on her. Eva is going to be the cutest Tinkerbell EVER!

Our little one is 9 months old and well we have 3 months to go for Eva's 1st birthday, can you believe it? Time certainly does fly, I know for us 1 year seemed like a lifetime away, but here its almost upon us and well we could not be more excited about it. Eva has had her ups and downs but no where near what I read other kids with HPE have. Sometimes I feel pressure like I'm supposed to have a ton of doctors for Eva, what am I doing wrong? Why does she only have a pediatrician? I guess I have to just step away sometimes and just focus on my family. It is hard to see that she has difficult days and well, we try to get through them and not try to "fix" her. Is that wrong? Anyway, please, these are just rhetorical questions, I really don't want opinions, I get them all the time especially unsolicited ones. HPE kids are so unique that even kids with the same exact severity of the disease are different and thats what I have to keep telling myself. There is literally no book on how to care for or even treat a child with HPE. In every state there is a different physician with a different opinion for care. Parents everywhere are doing the best they can. Eva does not and will not weight the same as any other baby her age, Eva will not develop the same as any "normal" child her age. My little mantra does help me see my daughter for who She is not for who every chart says she is. We have a wonderful pediatrician who is calm and assesses things with practicality. I really appreciate that, he looks at her and then he looks at the charts, and when he looks at her he says, "She is doing great!" And she is, we have our eating challenges but she looks healthy. Eva is in the 2 % of her age, she is way under weight and is now growing at a very slow pace but she looks great!

We already know that a feeding tube (other than the tube we put down her throat) is going to be with no doubt, needed. We are hoping to at least wait till her first birthday before getting evaluated. I do worry about doctors wanting to poke and prod her as if she was a project. So I'm careful not to take too much advice from doctors. She is a hard worker and I know that she is working hard to grow and eat. She has taken some "solids", applesauce, pudding and she is swallowing with no problem but it is a miniscule amount, nothing that would actually add calories to her diet. Mostly its to help her "remember" how to swallow, we do the same with her binky, it helps her "remember" how to suck. We add a little extra formula powder into her milk to help with calories as well, but we know that a feeding tube is pretty inevitable. We try to take every situation as it comes and try not to look too far ahead. I really learned that during my pregnancy, I wanted to know everything and how to do everything before I knew anything. I am learning that in some cases we need to plan ahead, way ahead but in others you just have to be patient. Eva is teaching us patience.

When we found out about Eva's condition, we had to let go of so many dreams. Big dreams and little dreams and we had to decide on new dreams for her. One of the most important things I wanted for my daughter is for her to be happy and to know that she was loved. Without a doubt, I know that Eva feels loved and is happy! She has satisfied every dream I could have ever had for her and for that I am so proud!

For all who love and appreciate my daughter, a big Thank You! For all of you that don't say, "wow, she is so small for her age", Thank You! For all of you that don't ask, "so when are you going to fix her cleft lip, you can repair it right?", Thank You! Thank you for loving her as Jose and I do, just the way she is!

A Brave Little Soul

Our hospice team gave this wonderful little story to us. I would like to share it with you.

The Brave Little Soul
By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," she asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through her suffering and God's strength, she unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

It's been a year

I can't believe its been one year since we got our ultrasound and were told about Eva's condition. I am somewhat sentimental with dates, after all I am a woman...LOL! I mean we don't celebrate our 1st date or when he asked my mom for my hand etc.. However, I still have the 2008 calendar up in Eva's room with the "ultrasound" sticker on the date of our appointment, September 12th, I was 20 weeks and a day. Our families were all standing by to find out the sex of our little one, we were excited and anxious. We don't commemorate that date or anything but it certainly was the day that changed Jose and I forever. I just haven't been able to take it down yet.

I belong to a Yahoo group for Holoprosencephaly, it's a kind of support group. We, most of us newbies, have never met. But there is this clear sense of knowing each other, understanding each other, we worry with each other and celebrate milestones with each other. Just about every week/month there is a new member that just got a diagnosis for their baby of HPE. This month, those emails have taken me back to a year ago, I sounded just like them in my emails, looking for more answers than medical providers were giving us. There had to be more than what they were telling us. With every new member there is a repeat of the same story. I mean almost exactly. "Severe abnormalities, condition is not sustainable with life, termination is the most viable option" Although, some mothers state they haven't made the decision to terminate yet, I am of the strong belief that they have, they are seeking confirmation for what they feel, that there is more to their story. Although, Jose and I never considered termination, I know that is exactly what your instincts tell you. We are no longer in the time when the physician and his/her statements were the last word and thought. We can respectfully disagree and seek further answers and knowledge. With every new mother that comes into the group, I know that because they are seeking, they have a HoPE and a faith in them that they have yet to unlock. That's what these little babies do, they hold this key to unlock potential in us.

I look back and Jose and I were completely different people a year ago. We felt lost at times, vulnerable, like failures, we just couldn't wrap our brains around what was happening. Completely different from how we feel today! I mean we are only human and we still struggle, as I'm sure parenthood will do to anyone and we still don't know everything about tomorrow but boy are we HoPEful. Our path seems clearer everyday and our purpose more eternal. What I am confident we have figured out, is that the most important thing for us to do is never stop working at figuring it out...LOL!!

Most of our close friends and family have heard us say this, but here I am saying it out loud to the blogging world: "We want another baby, we want to have our family grow", Eva would make an amazing big sister and well we all know that Jose is a great example and well I'm a willing participant...lol! We've talked about it right after Eva was born that we wanted to try around the fall of '09 but I'll be honest as the time rolled closer it seemed a little scarier, a little crazier etc. So last month I totally thought I was pregnant and well it forced us to really see how we felt and thought about another baby, no longer in theory. Well, I currently am not pregnant but after last month we are more sure than ever that we want another baby. Eva has also confirmed that she has many pearls of wisdom to share with a little brother or sister!

What will next year bring?

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!!