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...