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!

It is time to update everyone on the new things we learned about Ellie this week. I apologize to those that read this earlier. I messed up my draft somehow trying to edit pics into it so I am having to write it over. We went to Boise on Tuesday and had an all day doctor event. Our first appointment was with the Elks Hearing and Balancing Center. At this appointment we learned that Ellie has Bilateral Auditory Neuropothy. In simple terms, all of Ellie's mechanical parts of her ears work just fine, but in the middle of all the mechanics is the auditory nerve that signals to the brain to hear. Instead of clearness of sounds and words, she hears static with it. It is best described like you are trying to tune into a radio station and the speakers are not functioning correctly. The louder you turn it up, the worse the static gets. She may have good days or moments or bad days or moments. It will be quite interesting to see how this turns out since there is not really a great way to help people with this type of hearing loss. I am inserting an article we found that also might help describe it. "Auditory Neuropathy is a hearing disorder in which sound enters the inner ear normally but the transmission of signals from the inner ear to the brain is impaired. It can affect people of all ages, from infancy through adulthood. The number of people affected by Auditory Neuropathy is not known, but the condition affects a relatively small percentage of people who are deaf or hearing-impaired.
People with Auditory Neuropathy may have normal hearing, or hearing loss ranging from mild to severe; they always have poor speech-perception abilities, meaning they have trouble understanding speech clearly. Often, speech perception is worse than would be predicted by the degree of hearing loss. For example, a person with Auditory Neuropathy may be able to hear sounds, but would still have difficulty recognizing spoken words. Sounds may fade in and out for these individuals and seem out of sync. "
The next appointment was our first spina bifida clinic with Ellie. This is an incredible resource to the spina bifida community because we get to go to the Children's Specialty Center at St. Lukes and in one afternoon we meet with all of the specialists in one location. This saves us on days and hours of follow-up appointments to Boise to meet with all of Ellie's doctors. So while we were there we met with her pediatric orthopedist. He diagnosed Ellie with a weak left hip that easily displaces out of her socket. The only way to try to help her hip become stronger is to put her in a hip harness brace for 1 month to 3 months. Ellie will be in this brace for 23 hours a day. She is being fitted into it next Friday on the 12th of March. There is a possibility that the hip harness does not work because of her spina bifida so we will have to wait and see. We are praying that it will work! It has been a tough week, but eventually we will find our way through her newly diagnosed conditions and be ready to move on and help her with whatever we can. That is it for the update and hopefully all is well with everyone else! Oh, I almost forgot. Ellie also formed an umbilical hernia in the past week, but at least this is an easy fix compared to everything else. Thank heaven for easy fixes!

Hope you enjoy the new pics. Thanks to Katie Dalling Photography! We got some good ones!