Well I have found something new and fun to do lately.  Four wheel riding!  I don't know why for sure.  Is it the feel of the wind racing around me or the idea that I get to spend more time with my husband?  All I know is that it is the first thing I have done in the last few years that has truly felt like a break from all my responsibilities... Freedom from therapy, catheterizing, stress of illness, especially UTI's... I don't know.  So many different things that seem to bundle up into one big stresser!  I haven't blogged for way too long!  I'm sorry to the people that have been trying to follow Ellie's story.  I guess life has just been too busy.  I feel like I've been on a roller coaster ride full of twists and turns, stop and go, and ups and downs.  

        Ellie is close to being 2 and a half years old now.  She has large equipment in our front room that she uses for therapy each day.  She received her first pediatric wheelchair just before she turned two.  Her first chair was a homemade bumbo trailer with small bike wheels at 18 months.  Ellie had that bumbo wheelchair figured out within a month from when she very first got it.  So she was very ready for her pediatric chair because of that.  It's been one of her biggest blessings in life.  And at the same time there are many times that I think "wow" this is why 2 year olds don't have wheelchairs normally!". She goes all over and is not scared to try anything.  I can't count how many times I have had to stop her from trying to go down the stairs in it.  We've also learned that grass and her wheelchair do not mix.  Her first and only tumble was in the grass.  Luckily it scared her, but didn't hurt her.  

      This year has also been a huge milestone for Ellie when she is out of her chair.  Ellie is now scooting all over the house.  Its great to see her figure out how to get around No matter how strange it looks!  Ellie has terrible eyesight too so after getting her fitted for those, she has tried to scoot farther to the objects that she can now see from a distance.

       Since the last blog, Ellie has had incredible improvement with her hearing.  After a few surgeries, tubes in the ears, and many miracles, Ellie hears above normal now.  Because of the amount of time she couldn't hear and her premature birth, she is still working on talking and saying words clearly.  She has about 70 words that she says regularly now and she is working really hard on two to three word sentences.  In November 2011 Ellie had some pretty serious throat surgery. We discovered her 4+ tonsils (worst tonsils you could ever have) and enlarged adenoids.  Also with that was tons of fluid in her ears as well.  And the surprise was a Laryngil Cleft on her vocal chords.  So after a total throat reconstruction and another tongue clipping, Ellie has had very vigorous oral therapy to help build up her mouth and tongue muscles.  One of her biggest problems right now is that she can't lift her tongue to the top lip.  She can finally stick her tongue out, but not up because her muscles just aren't strong enough.  If we don't fix this she will not be able to talk properly or eat certain foods as she grows so this is a top priority. 

      As far as Ellie's lower extremities, she kicks more but still not enough for those quad muscles to develop in order for her to walk.  Her hips are the worst they can be, but this is a possibility with her condition.  So we weren't too surprised about them going out again.    The other thing we learned in the last year or so is that she has some malformations with her brain too.  These malformations could affect her in the future so we have more info on things to watch for that can be affected by it.  

        All in all, it's a busy life.  Trying to keep up with a special needs child and a normal school age child has its obstacles but I still feel so blessed!  I've learned a lot and I am finally hitting the new normal mark after having Ellie.  Other Spina Bifida moms told me that I needed to give it two years before I could feel somewhat settled and they were right.  Life is good!  Yes, still busy and stressful but good!  I have realized that there are many challenges ahead for our little family. More medical issues are coming and continuing, but I know I can handle it. God is on my side and in my heart.  I can get through anything as long as I remember that. 

       It's funny... Earlier as I rode up over the hill from my parents home, a flood of memories from my childhood came over me.  I ran and hiked those hills only 15 years ago.  I never thought my life 15 years later would have turned out like this!  But at the same time, I would trade it for nothing!  Oh! How I have grown since the last time I went into those hills.  It was great to know and feel a sense of accomplishment for what I've done with my adult life so far.  A lot of my dreams came true and by dreams, I mean the important ones!   The ones that count eternally!  

THE ELLIE PROJECT

Hi Family and Friends!

Our little family has an incredible opportunity with the help of your support. The J Rodie Hope Alliance Foundation, based out of Boise, has agreed to help us with our home situation.  We desperately need a wheelchair accessible home for Ellie.  The amount of support this foundation gets will determine how much they can help us!  This could be as big as a new home if everyone helps.  

So this is what we need you to do – go to the PayPal account below and donate $1, $5, $10, $20... Whatever you feel you can do.  It doesn't matter how much, just that you donate and spread the word about this foundation.  Please pass this on to at least 2 people and ask them to do the same.   Hopefully a chain reaction will blast out of this so the foundation investors can see how much support we have for this project!  The cool thing about this donation is 100% goes to our family project.  

Also, we need this done as quickly as possible.  Please go to the PayPal account and put in your donation.  It's very easy and only takes a couple of minutes.  If you have any questions or concerns, feel free to ask us.  Thanks ahead of time for your support and love!  We know we can count on you guys!!!!  

Love,  Earl, Emily, Emma, and Ellie

___________________________________________________________________________________

Friends! PLEASE- Help Support the J. Rodie Hope Alliance to raise funds for 2012 events!!  Your donation of $20.00 or more will earn you a chance to win a JR Hope Alliance Sunshade for your car, t-shirt, bracelets, and a raffle ticket for our upcoming raffle for over 50 prizes. 

THANK YOU! 

https://www.paypal.com/cgi-bin/webscr?cmd=_sxclick&hosted_button_id=E7TN8CK644AKY

 Please pass this onto your friends & family!!! 

  On behalf of the J. Rodie Hope Alliance, thank you!

Website: www.jrodiehope.com

CEO/President: Jason Rodie

Phone: 208.861.4554

Slow and Steady Wins The Race...

I am late updating. But there is not a lot of time in my life right now. Sorry about the pic. You'll just have to turn your head. Lol!

We went back to the spina bifida clinic on the 8th of June. We started off with the hearing test again at Elks Rehab. After her test, she showed major improvement on her most severe hearing loss. Her hearing went up 40 to 50 decibels which means it is showing mild hearing loss. A Miracle! Thank you all for the continuous prayers! It really makes a difference. After we got through that appointment we had a crying fest with my dad. It is amazing to see that her hearing has improved so dramatically. The audiologists were even surprised. (My dad was in Boise for conference meetings luckily at the same time we had appointments.) Went to lunch and then on to the spina bifida clinic. Ellie's right hip didn't change from the last time we saw Dr. Showalter (Othopedist) but we don't really know if it will. We are keeping her in her harness at night until the middle of July and Dr. Showalter will decide then what we should do after that, if anything. Because of the spina bifida, she may just have a weak hip because of the neurotube defect. Dr. Showalter prescribed Ellie her first AFO's. (Ankle Foot Orthodontics- Orthopedic footwear) This foot brace will help her feet not concave and hopefully straighten out. These are also the type of shoes she will have to wear in order to possibly walk. So, this is the biginning of a lot of these braces. We went into Rehab Systems here in Twin, and Mary (the specialist that makes them) cast her feet and legs. She told me that Ellie's feet were the smallest she has ever done. I guess that spina bifida kids do not get their first pair of AFO's until they are atleast one normally. Ellie is once again challenging the medical field. She has done this with so many things. Back to the Boise trip; After we were given another bezillion things to add to her physical therapy from the spina bifida PT and the neurosurgeon gave his stamp of approval, we went back to a friend's home that kept Emma for us and had a nice BBQ and some much needed relaxation time.. On Wednesday morning we went to go see the Urologist for Ellie's first official appointment. Our Urologist is Dr. Waldmann. He is absolutely wonderful to work with and we have heard that he is one of the best we could see. Ellie's Uerodynamics test results were not good. They tested Ellie's pressure levels in regards to her bladder. A normal bladder should only have a pressure level of about 40. Ellie's pressures were 90. (It is a long process to explain why her spina bifida affects her bladder and kidneys. Just think of it as a nerve defect so the triggers to the brain to open everything up in order for her to urinate normally does not work right. There is a message being sent to the brain that is not making it through the entire cycle. If you want to understand this better, call me...) This means that she has to start being catheterized. This is why I have not updated the blog because I am trying to learn how to do this to my little baby four times daily while we are working on getting her bladder to stop spasming completely with medicine that relaxes the bladder so she won't be able to urinate on her own. She has to be given her medicine three times a day too, so hence...I don't have a lot of time for much else right now. We have to cath her because if we don't, she could have the possibility of the urine going up into her kidneys instead of down and out normally. This would cause some serious problems. Even life threatening. So, all in all, 2 steps forward, one step back...slow and steady wins the race. This is definitely my new motto I have adopted. Catheters are scary and hard right now, but when I think that I will be able to possibly have a talking conversation with my daughter one day, I feel that the catheterizing is a good trade off. How grateful I am for her health and strength, for her sweet spirit and her fun personality coming out a little more each day. She is incredible and she is so strong!!! I can't get over her strength. She continues to teach me every day that I can do so much more than I ever thought I could. What an incredibe blessing for our entire family. Emma is amazing with her and her daddy loves her and makes her giggle more than anyone else can. Small little miracles happen every day as she continues to develop and grow. She is now over 15 pounds and 23 1/2 inches long. All in all, she is in great shape. I am finally not crying like I used to and I am finding a routine that works for us all. I am so thankful for my savior, for the fact that He knows me and takes care of my needs. He knows the trials that we all have to face in order for us to become strong enough to return to our Heavenly Father. Slow and steady does win the race and if I keep this in my mind I can continue to do all that I need to so Ellie can have the best life possible!

Rambling....

For some odd reason I keep reflecting on what our little family has gone through the past year and I try to compare it to where we are now. When I first found out about Ellie's condition, I cried. I don't believe that I have ever cried like that before the news of hydrosephalis. And now I find myself crying almost just as hard and frequently. I have a dear friend that has gone through an incredible heartbreak recently. Her journey started out with hydrosephalis too. Our paths are quite different regarding this crazy disease. My baby is here and her baby is back in Heaven. Sometimes I wonder why my baby stayed and why hers didn't. But I know that Heavenly Father has a plan for all of us and I also think that maybe her baby was just too good for this life. I feel for my friend and I can't imagine going through what she is going through right now, but in a small way our grief has a lot of similarities. Both of our lives have been forever changed because of this disease and I have found that our reflection on life 's plans are up in the air. We both have no idea where this new world will take us. I hope for the day that I can feel a little in control of my life again, but I have also realized that we are not here for ourselves, even a little bit. Earl and I went out of town last weekend and the ward we were visiting had some incredible speakers. They spoke of service. I have been having a difficult time lately trying to figure out where my old life a year ago fits in with my new life presently. And the truth of the matter is that it doesn't really fit right now. I keep trying to make it work, to balance all of it, but my heart is completely into Ellie and my family. I think it might be this way because of the appointments and therapy that keep me hopping, but also because my perspective has changed. I want to keep serving others and I feel like a failure because I am not even getting anything accomplished in regards to serving anyone outside my family. But how do I do anything full heartedly when my passion for the things I loved before is gone? I guess gone is pretty harsh. I love the scouting program and I still love music and teaching, but how do I balance this along with these crucial years ahead for my daughter? Wow, the famous saying that goes something like "Life isn't supposed to be easy, only worth it..." is very true. Maybe this is the time where family does come first or maybe I haven't given myself enough time to adjust. Is there an adjustment period that ends? What if it really doesn't end and I end up not serving others like I am supposed to. One of the speakers said that those that lose there life to serving others ends up finding their lives in the process. Am I going to be all that Heavenly Father wants me to be? Or will I fall short because I can't figure out how to do it all? And how am I a good example to my children if I can't even figure out how to show them how important it is that we serve others around us and not just ourselves? After all of this mumbo jumbo of rambling on, I guess that my answer is still time... I need time... time to figure out what my Father in Heaven wants me to do...time to sort out my emotions with this entire experience and where I am supposed to go with all of it. Strength is not something you are...I believe it is something we all grow into depending on what challenges we each have. Maybe I need time to build up more strength to handle what is to come. My dear friend has been an amazing source of strength to me. I know that she is much stronger than me and I am looking forward to being able to learn and grow from her strength. One thing that I do know is that I am stronger now than I was before this life changing experience. And although I may not feel strong enough to to do everything I need to every day, I have a chance to build my strength and I hope to be able to add my old life back in with my new life. We have a busy week ahead of us with more Boise appointments. Hopefully Ellie will get feeling better. She is dealing with her first cold right now, but so far is handling it pretty good. More updates to come soon! Thanks for everyone who gives me strength and shows their love toward our family. I don't know where we would be without you...

Another update...

Well, we just returned from another Boise trip. Ellie's hips are now stabilized. The orthopedist told us that he was very surprised because he expected the hips to not ever be stable. She just keeps showing us more strength than any of us expect from her. So, Ellie is now able to be out of the brace during the day. She grew a lot since the last appointment, so they also fitted her for a new hip harness for night time. She now wears a medium and it is so clean!!!!! I love it! Dr. Showalter asked me what I was going to do with her old one. He asked if I was going to burn it because he knows how much I despise the nasty thing. I told him..."Of Course. We are having a big old bonfire for it!" We all laughed. I am so grateful for amazing doctors. We have been so blessed. I am especially thankful for my little girl this week. Not everyone recieves the same results as we have with babies that have special problems at birth. I figure that Ellie must have something really important to teach us. Emma is loving her more and more every day except for when she is watching her Dora show and Ellie starts crying. I have to watch out for that one because the other day, Emma put a blanket over her to muffle the cry. When that didn't work, she went for the pillow and I had to quickly intervene and explain to Emma that she could not do that to her sister ever and that it could kill her. Emma was wide eyed not realizing this. It scared her enough that I don't think she'll do that ever again. And so the sibling rivalry begins! All is well. The blessing was amazing! So many came to support us. I stopped counting after 120 people. Thanks to everyone for all of your love and support. We still feel that we are only beginning this journey with Ellie. Much to learn and many unanswered questions. We learned our first 25-30 signs for Miss Ellie this week. Emma loves it. She is learning just as fast as us. It's amazing. I was scared to start this new journey, but now that we have started I am actually really excited! It is a lot of fun. Ellie will probably be fitted for her (first of many more to come) feet braces sooner than later. We will find out the details on that probably within the next month. Thanks again and again to Aunt Rachel for making Ellie's blessing dress and for teach Emma her sunbeam lessons during our long homebound state. Also, thank you Bethany Cook http://www.setintimephotography.blogspot.com/ for Ellie's pictures. We love them! You are incredibly generous, an amazing woman with so many talents! Thank you for thinking of us and calling us again! We will post more pics soon. Love you guys! Thanks for your continuous prayers, love, and support!

April 22,2010 A much needed update!

I have recently been told by a dear friend that we have terrible luck. Another friend asked me why the universe was against us. I have to admit that I have had my moments of frustration because of the different things that have been happening to us the past few months, but all in all, we are so blessed! It has been fun getting to know the Elders Quorum a little better. We have a great group of men in our Ward and they are so willing to help when it is needed. Thanks to all that came over to help with our water line. Just thought I would show some pics from that day. I finally have realized (for now... hopefully I will hold on to this insight...) that whatever may happen to us or whatever we may have to endure in this life, there is always a solution no matter what. We are here to help each other through any crisis. Serving and putting everything in the Lord's hands is very important and if we can do this, all will fall into place. We may have to be patient about it and we may go through times where we don't understand the reasons, but the Lord does reveal the reason eventually. Sometimes He is quick to reveal and sometimes it takes years to reveal His reasoning. All I know is that He does this at the right time, the right place, and when we are ready to understand it. How grateful I am for my little family and for Ellie! The Lord knows what He was doing when he sent her to us. She is incredible and doing well! This morning was the first time that she sat with me laughing and smiling--reacting to me for about 5 minutes straight. It was an incredible feeling considering that before this morning, she has had very brief smiles that never stayed. If you blinked, you would miss it. It is so overjoying to see her smile at me. When she was born, she didn't have a facial expression at all. It is amazing to see how far she has come and every little new thing she does becomes another miracle to us. This morning, while I was talking to her and laughing with her, I became overcome with emotion because of this. It is so difficult to not know what the future holds for her and the things that she will be able to do or not do. But, the Lord will give her what she needs. This I know for certain. Our family is so excited to finally be at the end of our homebound saga. Ellie will be blessed on May 2nd at 11:00 am at the Harrison Stake Center. A luncheon will follow. I hope that all who would like to come will come. Everyone is invited to both so please let us know if you are coming. We want to thank all of you in some way for the never ending prayers and love you have shown our family this past year. Call us so we have the correct food count! (208) 733-2059. I will try to not take so long to write the next entry...oh...her medical update for the past month. She is close to 11 lbs now. The Orthopedist believes that her hip has stabilized. They will do an ultrasound on it in May and if all looks good, she will go to part time with the brace. They are planning on bracing her feet as soon as the hip brace is off, but at least she will be able to wear clothes normally with those braces. These feet braces will hopefully help her curled up feet to become straight again. She has been having some acid reflex but the medicine seems to be working. Her uerodynamic test in Boise is coming up soon, so that should give us some more insight on her bladder and bowel control. We still are very happy with our nurse and our physical therapist. Both say that she is progressing all the time. That is what we want to hear. So now that I have made this too long, it is time to post this. Please come to the blessing. We are so excited to see everyone again and to finally show off our beautiful little Ellie in person! We love you and are excited to see you soon!

Ellie's New Look

Ellie was fitted for her first brace last Friday on March 12th. Her Bone Doctor is Dr. Showalter from Boise. We will be going to see him every two weeks for as long as she has it on. We should know in 8 weeks whether the brace will help her hip displacement or not. If it doesn't they will take the brace off and that will be that. We did find out that if the hip harness does not work, she will still have a good chance of walking. So this is great news to us! Ellie weighed in at 8 lbs 7 oz this week. She is getting fat rolls all over and it is pretty amazing to see her looking so healthy. So far we have stayed away from sickness. We are a little more than halfway finished with being homebound. It seems incredible to think that she is almost two months old. She has been such a fighter from the very beginning and she continues to amaze us with her strength and spit fire personality. Her lungs are getting stonger and stronger. She wakes up the whole household when she wants to eat at night. She has figured out how nice it is to be held. This makes it a little tougher for us to get anything done, but she is worth it and babies grow so fast anyway that we might as well take advantage of holding our little Ellie. We still feel an incredible spirt when we are around her. I hope that she will always have that spirit. Heavenly Father is blessing us immensely through angels in heaven and on earth. Thank you to all those that have helped us out in one way or the other, whether you feel it is big or small. All of the service you have done is a huge blessing to us! Thank you, thank you, thank you!