Christmas...let me tell you why I love it!

I'll have to be honest, I never was a real big fan of Christmas. I have always appreciated the meaning of the season, however, the extreme commercialism was just a big turn off. Nothing bad happened to me as a child or anything. No sad Christmas', I don't have some traumatic story or anything, I just grew tired of the shopping, shopping, shopping (PS..I'm not a big fan of shopping either) and the asking, asking, asking for everything. The commercials were also a little much, everything on TV is a must have item, I mean really how many toys does a kid need. So, of course, I marry Mr. "I love Christmas". Soon after we were married I had to break it to my husband that I am not a fan of Christmas, he was shocked and appalled, how can anyone not be a fan of Christmas?! Let me tell you the greatest thing about my husband, he grew up in a humble home, not poor but humble, so he didn't love Christmas because that's when you got great gifts and everything you wanted. He loved Christmas truly because of the meaning and the spirit that Christmas represented, Christmas day he loves to read the story of the birth of Christ from the bible; the humble beginnings of our Savior. And caroling, he loves Christmas music. In my whole life I have not had better Christmas' then I have had these last two years with my husband. This year there were no gifts, we didn't open any presents on Christmas morning but it was the best Christmas ever! Ah...please don't play any sad songs for us, I am serious it was the best Christmas ever, PRESENTS DO NOT MAKE A CHRISTMAS!! We unpacked boxes and cooked up a storm we played holiday music and Skyped with family. No,I'm not delusional, I know I'm a mother and I know that someday we will have money and we won't always be this poor and seeing the joy in my child's eyes will make me melt but these last two years and the next few poor years that follow I guess I want to learn how to instill in our children that Christmas is about family, good friends, making things like food or treats to give away, love and especially time together remembering the birth of our Savior! Traditions, like tamales, pozole, bunuelos are also pretty good!! I really want those gifts to be secondary, Santa to be a wonderful story but not someone to really believe in, kind of like Mickey Mouse or the Princesses. I know don't shoot me because I said no Santa. I didn't grow up with the whole Santa story, actually I believe most Latin children didn't.

So, can someone change you? Yes! I have come to love this holiday and the true spirit that surrounds it, I have also come to learn to stay away from the mall and if there are going to be gifts, getting them slowly through out the year is best...holiday shoppers are crazy...LOL!

Merry CHRISTmas Everyone!! We hope your holiday was filled with love, family, friends and traditions!!

Los Pena

"...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!!

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!

My special poem!!

My husband and I are very different.  Sometimes I think wow, I have a lot of training to give this man!  And somedays I am reminded wow...he has a lot of training to give this woman!  Today is Mother's Day and true to the wonderful, thoughtful man he is he gave me this:

I know I say you're beautiful

For me it's plain to see

That my life was completely changed

the day you came to me

Your beauty comes from deep within

a fire burns inside

a kind and gentle loving heart

you're outside just can't hide

You're sweeter than a tulip's scent

you're smarter than can be

You care so much for those around, 

no one can disagree

I want to be a better man, 

I want to learn to love-

the way you love Eva and I

and our Father up above.

I'm proud to say I married you,

I' proud to say I'm yours, 

I'm proud that you do love me so, 

my heart so overflows.

We have so much ahead of us, 

much to look forward to, 

though challenges await us, dear, 

I'm glad they'll be with you.

So please accept these few kind words

I mean them every one.

Today I am reminded of the love that exists between a husband and a wife.  Motherhood has brought me great joy but I could not have done it, I could not do it without the constant support of my husband.  I am grateful that he is the kind of man who is a leader, a hard worker and who is generous and tender.  I am looking forward to many more Mother's Days as the mother of his children.

Thank you for allowing me to share this....

Happy Birthday Susan Turley and The Joys of Parenting!!

Today is our friends Susan's birthday.  Susan would have been 26 years old today.  I have written about Susan in past posts, she was amazing and is inspiring!  She was the true definition of a Christian, she was loving and inclusive of everyone, she was happy and friendly, energetic and fun, she was faithful and true.  I guess I look at her life and I think of her parents and what a great job they did.  They were true to their faith and they were constant good examples to their children.  This is the parent I want to be.  I think of Eva and regardless of how short her life will be, she still needs good examples.  She needs examples of hard work, of honesty, of charity and service.  We can't just tell our children what we want them to be, WE must be the examples they turn to.  We can not ask them to work hard and not show them what hard work is, we can not tell them to be forgiving and loving and not forgive or love.  We can not ask them to choose the right when we don't.  

Parenting has been my greatest challenge and (up to now...that's my disclaimer) the greatest experience of my life.  I'm not sure what it is about children but it makes you love your spouse more, it makes you have more conviction (or at least work harder at it), it makes you want to be better!  If I had only known what being a parent was all about I would have done this sooner...LOL!  Well, the Lord knows each and every one of us and he knows when our time is and when our time is not to parent!  I think its a matter of us believing that and that he truly knows best.  I know parenting can be hard, challenging and for some lonely.  But I also know that we are never alone, that a loving, caring, merciful Heavenly Father watches over us as we parent.  I know that, when we ask and listen, he guides us with His loving hand to make the right decisions.  But, we have to ask and we have to listen!  This in itself can be the most challenging part of parenting.  I know that I have not met all the challenges that some of you parents have and that we all experience different parts of being a parent to a particular child, but I know that when the decisions we make are in the best interest of our children they are good decisions and that makes you a good parent!  And better yet when we include our Heavenly Father in these decision we are much more clear on the answer.

Happy Mother's Day to the Mom's that are mom's and the Dad's that are mom's and to the mom' s that are not yet mom's!  

12 Weeks YaY!

So our little one is 12 weeks today!  How exciting, I can honestly tell you that 3 months seemed like centuries away.  Eva is amazing!

The weather is finally looking up, yes it snowed here like last week!! We love our walks as well as mommy needing to get back into to shape for baby #2!  No we are not pregnant but we would love to be by the end of the year or the beginning of 2010!  Hey we believe Eva needs a little brother or sister to admire her.

So much has been going on, hence me not blogging for awhile.  Well, Jose got a full tuition scholarship for Spring/Summer term, it came out of the blue--it seemed--and was an answer to our prayers!  He will be able to make up some of the classes that he dropped during winter semester.  He is also starting mentored research this semester and is so excited and nervous all at the same time.  He has gotten some great responses from professors and so far has chosen one of the more challenging labs to do research but also the one that has the best reputation, its the cancer research lab on campus.  Some say it is one of the surest ways to get into medical school--ha, who knows.  Eva, Jose and I have enjoyed this "break" from school.  We have taken soooooo many pictures of us and we have gone exploring in Provo.  This is Jose's last week free from school, work and work...haha.  We are trying to make the most out of it, we have just totally focused on our little family.  We know that we will need this time and these experiences to get us through the more difficult times to come.  He knows that committing to school and this mentored research we will not see him very much.  Eva and I will be ok, though.  I am so proud of Jose!  I have albums on Facebook with pictures, I'm not that experienced with blogging.  

Last night we had the best FHE (Family Home Evening), we talked about goals and how fortunate we are to belong to a church that values goal setting and progression.  How we have prophets that counsel us to always look to make goals and to always find ways to progress and grow.  It was a great FHE!  So one of our goals in honor of Earth Day, we are going to be cleaner in our home and with our bodies.  Jose and I and our friends Matt and Mele, are going to run the Provo River 1/2 marathon!!!!  How fun is that!  We have made weekly goals both for our physical and spiritual growth.  You just can't have one with out the other!  The race is in August and we have about 14 weeks to GET FIT!  We both are kind of pumped about it, I hope we can stay pumped and that we can keep each other motivated.

Eva had a rough couple of weeks.  There was a lot of activity in our house.  When she gets irritated, she has an increase in seizures it takes a lot out of her and it almost seemed like she was just so tired of fighting.  However, that next week we just chilled and we were back on Eva time and she actually slept A LOT.  Well come that Friday her nurse, Margaret came to see her and she said she was looking good and that she was surprised how much better she was from the last visit.  Eva is quite the little fighter!  I have to admit it sometimes gets to me that my little one (medically speaking) has no cognitive thinking, no emotions, no real understanding or reasoning because of the part of the brain that she is missing.  However, I am a Latter-Day Saint and of course, I know better.  I know that her spirit knows me and knows how much her daddy and I love her!  I feel as though Eva is the one taking care of Jose and I, she is so wise to what we need and for right now we do need her.  I do pray that when the time comes we are able to set her free with out complaint.  Maybe some crying and heartache, definitely but with the understanding of the Lord's greater plan for her and us.  I can not even imagine what the Savior's mother felt to know what her son's charge in this life was to be.  To love Him, to raise Him and then to watch Him be tortured and die a physical death.  She is such an example to me of selflessness and love!

Angel Watch needs all of our help!

We need your help, Angel watch needs your help!

In past blogs I have talked about Angel Watch.  Just a recap, Angel Watch was the program that works with Intermountain Healthcare, they provide support and counseling for families that have received diagnosis similar to the one we received with Eva.  The terminal diagnosis.  

Angel Watch prepared us prenatally, not only with support and counseling but also with practical information on how to handle any outcome before and after delivery.  They were supportive of us, no matter our decision.  It was easy to want Eva, to not terminate the pregnancy.  It was not easy to go through all of the motions.  Angel Watch was essential in helping me sort out my feelings, on how to deal with family members that, although meant well, didn't really know how to "deal" with us.  They helped us with difficult things like finding a mortuary, a funeral home.  How to plan for the best delivery if our baby was stillborn.  They did this all in the most thoughtful and respectful manner.

I think back to September 12th, the day we received our diagnosis; Jose and I were numb.  The only thing we knew was that we wanted that little girl but the rest we had no clue how we were going to do it, the rest of the pregnancy etc...  I know the Lord puts others in our lives to work on his behalf.  Angel Watch was just that, they are Angels that are watching over us!  I could not imagine any family, couple having received the news that their baby might not be born and if born, might live hours, days, weeks or months.  The love, support and counsel that we received was what prepared me for now, for today.  It prepared me to be the best mom I could be to Eva, to enjoy her, to make memories everyday with her, even prenatally!

Well, Angel Watch is run almost entirely by donations and they need your help to keep this program going for next year!  This is how you can help!

Pam Hansen, who is the author of a book, Running with Angels is co-sponsoring a 5K Run/Walk on May 16, 2009 along with the help of Intermountain - Utah Valley Regional  Medical Center (Where Eva was born).  It is at 8:00 AM at Thanksgiving Point, in Lehi, UT.  Registration is until 7:30 AM.  This year, she has designated that all of the proceeds of the race are to go to Angel Watch to support the program in the Utah South area, with any special donations going to to our statewide program!  It would be so wonderful if you were in the Utah area or wish to come to Utah and run or walk in this 5K and help support Angel Watch!  If you are not in the area but want to help support this amazing program please, please consider donating money.  

If you wish to donate, here is how you can do it: go to www.mckay-deefoundation.org and then click on ways to give and you'll see the donate online button.

9 weeks old

Eva is 9 weeks on Wednesday, April 1....no joke! We are so proud of her, she has definitely been a strong girl and a fighter; daddy and I have been fighting right along with her.  I see this strong spirit in her, she wants and needs to be here!  Although I know Eva's prognosis, and that she won't have a long life still, this little one has a purpose and since we are in week 9 and we were told that most likely she would not make it to 2 months, I know that she has some work to do.  She looks great but I also know how quickly things can turn so we celebrate each day and at the end of the week, each week and hopefully at the end of this next month one more month.  Jose and I do have to work on being ok with whenever Heavenly Father calls her home, I have to admit that I pray each day to really mean that, to really be ok, to have faith that Heavenly Father's plan includes us being together as a family forever.   

We celebrated her 2 month birthday on Saturday the 28th and her daddy made her a b-day cake--from scratch and it was awesome! We got to celebrate with some family from Tucson as well as with some very good friends of ours and that was a blessing!

Bendiciones!

Bendito el lugar, y el motivo de estar ahí,
Bendita la coincidencia,
Bendito el reloj, que nos puso puntual ahí,
Bendita sea tu, presencia.

Bendito Dios por encontrarnos, en el camino,
Y de quitarme esta soledad, de mi destino.

Bendita la luz, bendita la luz de tu mirada,
Bendita la luz, bendita la luz de tu mirada,
Desde el alma.

Bendito ojos, que me esquivaban,
Simulaban desde que me ignoraban,
Y de repente, sostienes la mirada.

Gloria divina, diste suerte de buen tino,
Y de encontrarte justo ahí, en medio del camino,
Gloria al cielo de encontrarte ahora,
Llevarte mi soledad, y coincidir en mi destino,
En el mismo destino.

These are song lyrics by MANA, Bendita tu Luz.   The song is about blessings and has been Jose and I's song from the beginning of our relationship.  It actually is my ringtone for him.  I like to think of everything and everyone as a blessing.  I know we feel different, I know we are different since the moment Eva came into our lives and it has taken our trials to see our blessings.  The love and prayers we feel from friends and family has lifted us, I don't think we could ever be as strong as we feel right now with out them.  You all make us stronger and better.

There have been incredible people in our lives, some have always been there and some just kind of popped in and have surprised us.  One such person is Susan Keller, she is a friend from our church.  She has been absolutely amazing to us, she loves and cares for Jose and I but more importantly she loves and cares for our Eva.  I can tell how much Eva enjoys her visits.  No matter Eva's mood I can see her calm in Susan's arms.  Susan has been a savior so many times to us when we just needed some time alone, Jose and I.   We have felt comfortable and secure leaving our little girl in the care of someone that genuinely loves her.  Susan is not a relative or long time friend, she has no obligation to us but she treats us like family and we love her.  She has been always thoughtful of us.  Recently Susan via her friend got us in touch with a photographer James Strayer, another generous person.  James, his wife Susan and their 7 week old baby boy came to our home and took beautiful pictures of Eva and of our little family.  He was so great with Eva, with us!  I am horrible at taking pictures, but James was able to put us at ease about taking pictures and just enjoy being a family.  He is a professional and takes beautiful pictures of babies and families.  I think you can see the love in his pictures.

Aside from numerous friends and family that have also been essential in our getting through this situation, these two individuals, Susan on a day to day basis and James Strayer with the sharing of his time and talent have allowed us to truly enjoy creating the memories of this moment.  We are grateful for all there generosity.  We are truly blessed with so many that have kept us in their prayers, that have told us how much they love Eva, even though they have not met her.  Ok...I'm going to sound corny... but your love makes all the difference to how we have made it this far, I know that love is real.  I know that love can change people and situations.  I know that love can heal.  Jose and I know that we have more difficult times ahead but right now I feel we will get through it and that we are not alone.  It makes me feel so good to know that we can share our little girl with all of you, that we won't be alone in remembering Eva when she is called home.  Thank You!

James is a photographer here in the Utah Valley, www.jamesstrayer.com.   

Blessings!!!!!

Reality Check

I guess life is just that all about the reality check.  Jose and I got one earlier this week in regards to Eva and her condition.  Being with her on a daily basis I can forget that she was given this terminal diagnosis.  Maybe its that I want to forget that time is limited with her in this life.  Last weekend Eva had a really tough time, she had an increase in seizures and fevers.  Some of her seizures even seemed a bit more violent, but they were non-stop, that meant non-stop sleepless nights for her.  She was so weak afterward and just not all there, her breathing was more shallow and she looked lethargic .  Her hospice nurse came to see her and told us that Eva's breathing pattern had changed and that was not a good sign.  She told us that it was a possible pattern of deterioration.  Again, Jose and I were sent back into our reality of how fragile her life is.  Don't get me wrong, our daughter is not "fragile", she is a tough little girl.  She is a fighter, hey she takes after her mom!  It is so hard to see your little one go through that, I didn't sleep for four nights, if she wasn't sleeping neither was I.  Margaret, our nurse told us that she could have only a week left.  Margaret also told us babies make liars out of doctors all the time and that she hoped Eva would make a liar out of her.  We increased her comfort medications and well, we discussed it with our families and Jose and I had the very uncomfortable conversation about, "what will we do, when 'IT' happens.  It was a rough beginning of the week.

Well the week is not totally over, but Eva has seemed to respond positively to her medication and she has gotten well needed rest.  Consequently, she seems her former self, strong and beautiful.  She has been sleeping well with the minimum seizure activity, for her any way.   I stare at her when she sleeps.  Is it possible to love someone this much?  I just want to be grateful for having this long.  I know we will be sad when she's gone but I genuinely want to think of her and feel happy, not pain.  Is that possible?  Is that achievable when you lose a child?  Well, here more pictures of our little one from this last week.  She is amazing!!  I wish all of you could get to hold her, I hope the pictures are of consolation. 

Love Los Pena

First Blogger Entry

2009
Tuesday, March 17
1:33:40 PM

Ok, So this is my first entry for our blog. I have to just say that Gabby has done an incredible job at keeping everything updated with what has been going on in our lives, especially with Eva. I am so grateful for everything that Gabby is for me and our little family. She is everything that I could have ever asked for in a wife. She constantly challenges me to do better and to try even harder to be the best person that I can be and I am really thankful that she does that. Gabby has been telling me for a long time that I have been needing to write something here in order to express myself and let others know what I am feeling and what I am thinking personally about everything that has happened to us. I have to admit that it can often be very difficult for me to do that. I guess I really feel that I have the responsibility as her husband to be strong and not let my emotions show too much in order for her to see that I am someone that she can rely on for strength. I know that this is true, but I also am coming to realize that, as she has told me time and time again, I need to have some sort of way of expressing myself so that the things that I am going through don't end up being bottled. up inside.
So here I am. I have to admit that I am finding it a little hard to figure out what to write. I guess I'll start with my feelings for Eva. When Gabby and I first heard Eva's the diagnosis, I didn't know what to think. I didn't know what to feel, so I think I just reverted to my "be strong" feelings and tried to comfort Gabby to the best of my ability. My mind, however, was buzzing. I didn't know exactly what it would mean to us to know that our daughter was suffering from a rare birth defect, but I knew that this would be a trying experience. From that day, this experience has proven to be one of the most difficult that I have yet had to endure, and even so, I am grateful for what we have gone through. I know that Eva was sent to us for a reason. I know that she has a specific purpose here on the earth. I know that she chose to be with us and to go through everything that she is going through. Neither Gabby nor I are sure of the reasons for what are happening, but we both have grown confident (through earnest prayer and fasting) that things are now in our lives the way that they are meant to be.
In an effort to make up for all of the posting that I haven't done, I have decided to include the Lullaby that I wrote for Eva for this last Christmas. I'll try to get the audio onto the blog if I ever figure it out.

Lyrics to Eva's Lulliby

Eva, my angel, oh dear sweet kind child
Hear me, my dear child, I want you to smile.

Little one, precious one
This song's for you
Eva my angel,
please know I love you.

One day, long ago,
your mom and I met.
We loved each other
and so we were wed.

Little one, precious one,
we prayed for you,
Eva our angel,
now know we love you.

Time has now shown us
that life can be sweet.
Even when we face
some days tough to beat.

Little one, precious one,
you make us smile
thank you our angel
we know life's worthwhile.

REPEAT CHORUS

Little one, precious one
This song's for you
Eva my angel,
please know I love you.

Milestones...1 month going on 2 months!

We all have goals, milestones that we wish to reach in our lives. They can be personal milestones, professional milestones. As parents, I've found, you not only have milestones you wish to reach for yourself but you have them for your children. I'll have to admit that previous to 9.12.08, the day we received Eva's diagnosis, I too had dreams for my little one, milestones I wished for her to reach, graduation, marriage, to be a parent. I can tell you that Jose and I mourned for those dreams but we didn't mourn for long. The Lord finds His way into your heart and comforts you. He comforted us, our dreams and hopes changed for Eva and she has made us so proud. We wished that she would be happy that we would be able to meet her, to hold her and to feel her warm face against ours. Although, I know I may never see her graduate, or get married or be a mother, she has fulfilled every wish we could have for her. She has reached some of her milestones and more! 

On January 28th we got to meet our baby girl, her daddy got to hold her; on January 30th I got to hold her. A week later we got to bring our brave girl home with us and 3 weeks after that she celebrated her 1 month b-day and Abuelita Luz got to hold her as well! 

This week Eva is 7 weeks old. We are so proud of her and so grateful to have her for as long as we have. Jose and I have held her, kissed her and comforted her and we know she is happy to be with us. She has fulfilled every wish we have for her. Everyday from here on out is a blessing, a gift, one day extra that we hadn't expected. She has helped us understand to never take anything or experience for granted. We love you Eva!

Slideshow!!!

Holoprosencephaly

Well I thought I would take the time to clear up some questions about Eva’s condition, Holoprosencephaly or HPE. 

Recently my sister-in-law, who is on a mission, wrote and asked me very basic questions about Eva and her condition and how it affects us caring for her, and I thought maybe others have the same questions.  So I’ll start from her beginning outside the womb and what we learned about caring for her.

Eva was born on 1/28/2009 at UVRMC here in Provo.  She weighed a very healthy 7lbs 8oz and measured 18inches long.  She was born with a cleft lip (no cleft pallate) and a flattened nose with a single nostril, she has relatively close set eyes; these are facial indicators of Alobar Holoprosencephaly.  Alobar is the most severe of the defect and is considered terminal.  She however, was born with healthy lungs, heart and other organs.  She feeds through a feeding tube that goes down her throat to her stomache; she does have the feeding tube in pretty much all the time except for during baths and she occasionlly pulls it out.  Due to her condition Eva has a problem regulating her body tempature so she does get fevers frequently.  She also gets seizures on a daily basis, we don’t quite know if they are directly related to the fevers or if they are independent.  We do give her medication to help with the fevers and we have some medication that we give her to help calm her during her seizures.  Now in regards to her seizures, they are frequent and not exactly like one an adult would experience.  She does throw her head back and her body stiffens but she doesn’t go into violent body shaking.  She does, however, have involutary body movement that looks like what some one with a tick or terets might have.

Her baby side: she has regularly feedings, every 3 hours.  She has regular bowel movements and dirtys on an average about 10-12 diapers a day.  She has little baby fits and she fusses just like a newborn.  Eva hates, I mean hates a dirty diaper.  Because she does a lot of breathing through her mouth and in conjunction with her cleft lip, she gets dry mouth and nose and so we use saline drops to help give her some moisture in her nose and we have some swabs to moisten her mouth.  She still is adjusting to day and night, some days she’s great and gets up during the day and will have good nights of sleep but sometimes she is up for a good portion of the night and well mommy or daddy are right there with her.  She is gaining weight on average; she is growing in length on average.  Her head is growing at a slower pace then other babies but that seems to be related to the condition.  She seems for the time being to know our voices and recognize us when we are near her, she will turn to the sound of our voice.

By all means we were given a normal child with a special condition.  As each week presses on we see her grow, we do see a bit of her personality.  However, as the seizures start to become more frequent things may change and we may begin to see less and less of that personalilty, it is something our hospice nurse has warned us about.  It does make me sad to think, she may get to the point of not knowing who we are, but Jose and I have great faith that in our reunion later in eternity that she will no doubt know us!

Caring for her is, I believe, not unlike caring for any other newborn.  We have some extras but it seems that even those who have children with no special condition, have some extra things.  Sometimes it’s because of their lifestyle or personal situation.  Jose and I are very fortunate to have so much support, in regards to Eva and her condition, our nurse, Margaret, our social worker Dave, they all gently guide us along our way, with encouragement and love.  It just makes us feel like we are doing the right things for our baby.

Los Pena