Update... because it's been awhile :)

Well our sweet sunshine continues to grow stronger everyday! We are so in love with her spunky and sweet personality! We see more and more faces and hear more sounds everyday! I have no idea where she gets all her crazy faces ;)!!! Ella has just cut her second tooth and it's so tiny and cute (of course)! She is just starting to rock back and forth on her hands and knees! Also she is getting more balance when we practice her standing! I don't know what she weighs right now, probably around 17-18 pounds or so! She is eating much better, she still struggles quite a bit with any texture. She gags/throws up from time to time when she eats her solids, but she sure is improving! Ella has been sleeping great! She is still pretty skinny nearly 10 months and still wearing size 2 diapers with PLENTY of space to grow! She also is still in size 1 shoes! She is growing tall though, who would have thought she was going to be tall and skinny ;) Her hair is turning lighter everyday. Her tips are still very dark but the roots are getting quite light. I really don't know what else to say in the update, she is perfect!!! :) If you have any questions you would like me to address here feel free to leave them in the comments, and if possible I will answer them! We ask that you continue to pray for Ella, even though she is doing amazing, she is still of course ALWAYS at risk.

I follow a blog of a sweet baby named Tripp Roth. His blog is http://randycourtneytripproth.blogspot.com/ In one of His mom's recent posts, she touched on the subject of germs, after learning that her son was fighting an infection. I thought she said it perfectly! She put it this way:
 "I made all new signs- for the back door, over the sink, in the bathroom.  I'm even going to start asking people to take off their shoes when they come in.  I mean, think about it, your shoes are the dirtiest, most disgusting things.  No telling where you've stepped or what you've stepped in.  I should've done that a long time ago, I know.  But it just seems like some people still don't get it.  I know that I wouldn't want the bug I pass on to Tripp's open sore to get into his bloodstream and cause him to be in the hospital.  You know?? ... But I guess not everyone thinks like that.  So I'm here to remind them:)  And it doesn't matter if you just left home and took a shower or if you washed your hands before you left the house... did you touch the door handle? or your steering wheel? or the buttons on your car radio???  All of those places have germs.  And when you come out of the bathroom... I mean REALLY- does that even have to be explained??  So before you touch my little pumpkin's toys... SCRUB HARD."  


Tripp has a very different circumstance then Ella, but the fact that germs must stay away remain the same! It is just so hard when people do not take Ella's condition seriously, mostly because she looks so healthy on the outside. When I read Tripp's mommy's frustrations of people not taking necessary precautions I immediately felt for her. Having to watch your child go through the difficult path life has given them is hard enough. Altering your life more then you ever thought possible to keep them healthy, safe, and as pain free as possible. Then to have someone who either unknowingly or worse knowingly disregards any boundaries that have been set in place to keep Ella safe, truly is so very painful. Look at the pic. above and remember what we are fighting for! I guess some people will never understand unless they experience the fear in a parent's heart raising a child fighting for their life...


Please continue to keep all of Ella's heart friends in your prayers as well as Tripp the baby in the link above that has "EB" Thank you friends for your faithful prayers! We can't thank you enough for all the kind words and gifts that have been sent our way! God is SO good!

videos to make you smile!

So I put up 2 video links, but apparently they were set on "private" and could not be viewed :(  So I tried to post them in the side bar to the right! Let me know if they work this time! They are pretty cute! :)

Pictures!

We had the AWESOME privilege of publicly dedicating Ella at church on Mother's Day! Usually we can't take Ella out of her covered stroller at church because of germs, but we made sure the people on either side of us were very healthy and we "unveiled" Ella for all to see! It was so wonderful to show her off to so many who have diligently prayed for her! She hadn't had her nap because of the time and therefore was a bit ornery :) She was so loud, but somehow I don't think anyone minded! We are so blessed to have such an incredible church family!

my family of three!

                                                                          praying!

                                                                      me and my girl!

                                                                  Daddy and his princess!

                                              thank you all for continuing to pray for miss Ella!

Ella's First tooth!!!

 About a week ago I got some very exciting news!! I FINALLY know EXACTLY how much Ella weighed and how long she was when she was born!!! For some strange reason Texas doesn't put that information on the birth certificate, then when I called the hospital to ask they told me it was private information and they couldn't tell me! I was shocked, and nearly in tears after pleading with them and explaining that the reason I hadn't got the information right when she was born like every other mother was because she had been whisked into surgery right away. I knew they had weighed her because they had to know her weight to give her the right amount of sedation medication. I said "but I'm her mom, I have her social, my social,... please I just want to know her weight and height!" "I'm sorry mam, that is private information... etc." ARG!!! "So you're telling me that this information that isn't even private that every mother is told right away you can't tell me?!" "Yes mam, that's what I'm saying" "I really don't understand, isn't there anyway I can get the information??" After a long debate... " Well you can request a form, fill it out, mail it to medical records, and there is a fee." " I have to   fill out a form, mail it in, and pay to find out her weight and length?" "Yes mam" "Are you serious?!" "Well your pediatrician may have that information on file." "So I DO have another option?" "You can ask."  Well I did try, I called the front desk of the pediatrician and as I suspected they didn't have that information on file, and they could only request it from medical records if I came in person and showed them my ID. So the next time Ella had an appointment I asked the doctor and she told me she would get it!!! About a week later as I was walking through a store, my phone rang,  it was the nurse calling to give me the information I had requested! I grabbed a pen and then, I heard for the first time, what I had been waiting to hear.  " 7lbs 4oz. 19 3/4 inches long"  I felt like I had just been given a moment that I had missed! I was beaming with pride and nearly burst into tears right there! After such effort and 8 1/2 months I thought I may never know, but God is so good! I couldn't believe it! So although this information may seem small, I feel like it is such a great gift to know! Never take the little things for granted!

Also, I have a picture of Ella's first tooth! It's tiny but it's SO cute!

Then...Now

Mother's Day 2010

Mother's Day 2011

                                                                    Thank you Jesus!!!!
                                  Had to laugh to keep from crying today, oh how very very much I love her!

Mother's Day / Ella turns 9 months!

So much flying through my head these last few days! Mothers day is just around the corner as well as is Ella's 9 month birthday! Also plans for for Ella's first birthday party are in full swing! Crazy isn't it?! Ella has just seemed to grow up so much in the last few days! She has OFFICIALLY...... FINALLY cut her first tooth! Although she is not crawling or pulling up yet, she (with assistance) can stand up! She is learning to stand up in her exersaucer too!! She is sooooo much fun!!!!! All day long I'm just like "this is RIDICULOUS! I love her SOOOO MUCH!!" She wakes up at night from time to time for her passy or a drink from her sippy cup, but for the most part she sleeps great! I really like it when she sleeps 12 hours solid multiple nights in a row, it makes me feel so rested! Last mothers day was my first mothers day! I was 6 months pregnant and SICK. I remember wondering if it would be the only mothers day I would get to celebrate. Here I am a year later feeling so blessed, wow, I'm a MOMMY!!!! I LOVE IT! Many times I have thoughts about what I would do if Ella was to die, wondering if I would really be able to keep going. I usually try to remind myself that God is Good, that He alone will meet all of my needs, that everything He allows He works together for good. When that answer isn't good enough for the painful thoughts, I simply say to myself, the Lord hasn't given me the grace to walk through that because He hasn't asked me to walk through that, If someday I must "walk through the valley of the shadow of death" I can't imagine, but I KNOW He will walk with me. As I felt the sting of pain even with the thought of losing her, I began to think of all the mothers that have lost a child. How very hard that must be especially on mothers day, I began to pray for all the mothers that I know who have experienced loss. I prayed for the pain they must be feeling, I prayed for peace. You see I know a lot of people who have lost children, and it breaks my heart. This situation I have found myself in has opened my eyes to so much suffering, I'm not sure if I was naive or just selfish before, but I had know idea how much suffering and loss there is in this world. I am grateful that my eyes have been opened, yet sad at the reality that is life. So to all the moms that have lost a child, this mother's day know that you are being lifted up in prayer. Everyday has such meaning when I realize all I have to live for! No life is worthless, every life makes an impact on the world. I may be home most everyday all day, I may have very limited contact with others, but I am making a difference in my husband's life and in my daughters life. I have no doubt that not one moment of caring for Ella is a waste, because I KNOW the Lord will use her in great ways! It is my honor to love and care for her. The Lord choose me to be her momma, and even though I feel so insignificant to fill my roll, I remember that He has a plan! I hope I can be half the mom to Ella that my mom has been to me, Love you Momma!!! I am really looking forward to celebrating mother's day this year, knowing that everyday is a gift and that being a mother is truly the greatest honor I have ever been given! Happy mothers day!

To my sweet sunshine,
Ella Dawn you are such a joy, you bring a whole new light to life! You are strong, you are a fighter, you are a conqueror, and I am so proud of who you are becoming! You are almost 9 months old, and although it seems like it has flown by it also feels like you have been here forever! Everyday you bring so many smiles into our home, you remind us that God is real, that miracles still happen, that prayer works! You are growing and learning, you are the best baby I have ever seen! Truly I am honored to call you my daughter. I pray you continue to grow more everyday, that your heart will keep beating strong, that you will know how very much I love you, and that you will feel God in your life. Jesus will ALWAYS be with you my Ella. Happy 9th month birthday, I love you forever like you for always
~ momma