8 Months

8 months today! I told you this one was going to be interesting! We have been busy around here. Big news of the day is Addie got her first tooth! Also, she passed her swallow test now we will be able to start more foods without worry! So far we have tried bananas. She loved them! Carrots were not such a hit.I have also noticed as she eats that she is opening her mouth a little wider. She has started making more noises and just being a little noisier all the time. She has really made some progress in this past month! Her arm also has seen some improvements. They are not extreme but she is actively trying to use it more. She will bring the left arm up to interact with her toys on her chest and she is trying to use the shoulder. We met with a doctor in Chicago to get her opinion on Addie's arm and if surgery was necessary. She did not have the same goals that we did of getting as much function as possible, but seemed content with the motion she already has. We will not be returning there. I met with her Neurosurgeon at home on last Friday and he agreed that nerve surgery on her shoulder, if it does not come back on its own, will improve her function. He also agreed that there are more options for surgery on her fingers and wrist. He was comfortable with the recommendations we had received from Cincinnati so we will be going forward with the team there to treat her arm. It is a good feeling to know that we have a couple doctors in agreement about her treatment plan, but it is even better to know that we have the Great Physician working also! We have seen His powerful hand over and over again in her life and in the life of those around us. Our nephew just spent a week in the hospital battling a serious infection but just as with Addie we saw God's hand throughout that situation. He was there through it all healing and orchestrating different events through that time and hospital for His glory to shine through to others. Our family as a whole has been learning the truth of 2 Corinthians 12:9a "My grace is sufficient for you, for my power I made perfect in weakness." Through Addie and through the issues my nephews have faced lately we have been able to see God's power in a whole new way that without this situations that have brought about our weakness we would not have. 2 Corinthians 12:9b "Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me." We want Christ's power in our life so that He can get glory through our lives. Knowing that God is getting glory and lives our being changed brings hope and peace in the midst of the storm. God has not yet completely healed Addie, but He has brought healing in Addie. I know that at any point He could completely heal her of all issues hip, arm, feet, and jaw. But I also know that through these struggles He is able to shine because He is carrying us through each step day by day as we turn to Him. We want to live our lives in such a way that God's name is glorified and praised because of it for He is worthy for all glory, all honor, and all praise!

Cincinnati Trip!

We got home late last night after a long but busy few days! We spent yesterday in Cincinnati enjoying the city some and then meeting with the brachial plexus team at Cincinnati Children's Hospital. After reviewing Addie's EMG from last week and watching her arm movement they were able to make some decisions. Dr. Little heads up the team there and he said that he thinks she has arthrogryposis and a brachial plexus injury. Arthrogryposis has to do with having stiff joints so just by having clubbed feet you could say she has arthrogryposis. In her case though it also affects her arms, shoulders, and probably her jaw hence our trouble with her feeding patterns. He said it is unique to have a brachial plexus injury and arthrogryposis, but they have just seen another child with it. Given all of this and because of the EMG they ruled out the need for exploratory surgery, which is what would have needed to be done immediately. Dr. Little explained that the EMG shows that there is recovery and healing still being done on its own on the tear in the nerve. He wants to give it 3 months and see what has come back on its own. So in 3 months we will head back to Cincinnati and do an EMG again that morning and then meet with Dr. Little and the team that afternoon. If surgery is necessary it will be that same week. He is hopefully that she will have at least 90% of her function back in that arm, but anticipates it to always be weaker than the right arm. He also agreed with us getting a splint for her wrist to wear at night and see how that may help improvements. So we left feeling pretty positive about the whole experience and knowing that as of now we have 3 more months to pray for complete healing without surgery but even if we do have surgery God will still heal! Yesterday, the brachial plexus team from Chicago that Addie was suppose to see Sept. 3rd called and was able to get Addie in next Tuesday Aug. 12th. We are going to go ahead and do that to get a second opinion based off the EMG results. This Friday is her swallow test to see if she is aspirating when she eats. It has just been a crazy couple of weeks, but we are getting some answers and able to make some plans about what is next and that is good. Though there is peace in the answers and having direction I never want to get my peace from knowledge but from God. I know that even in the midst God is here and that is my hope and my strength. Psalms 25:5 "Guide me in your truth and teach me, for you are God my Savior, and my hope is in you all day long." God is our guide and our hope in the middle of the known and the unknown because He is capable of changing it all!

Whirlwind!!!

What a whirlwind we have been on! We had the EMG Monday and discovered that Addie does have a brachial plexus injury. Also, today we finally got a copy of the report and it appears that in that injury there is a tear in one of the primary branch of nerves. She has recovered 38% use of her arm back and her elbow has a lot of motion but her shoulder and wrist do not. Mike has been doing some research and we are anticipating surgery very shortly. I came home from Chicago Tuesday night, after visiting my newest little nephew :) to a day full of appointments Wednesday. We started Wednesday with an occupational therapist evaluation to work on getting Addie a splint for her wrist. The OT recommended we follow-up the EMG with a brachial plexus team not just the neurosurgeon who had referred for the test. She suggested Cincinnati's team because she has worked with them and seen very promising results. I had an appointment scheduled with Chicago's team for Sept 3 but Cincinnati was able to get us in this upcoming Tuesday so I took it. Our next appointment that day was with a feeding therapist because since we have started feeding her cereal we noticed she does not open her jaw all the way. The feeding therapist decided we needed to be seen once a month to work on some exercises with her jaw. She also mentioned that she is afraid Addie is aspirating her food as she eats, especially her cereal. We are going to go in for a swallow test next Friday August 8th to rule that in or out; and now for the time being we have to feed her at a certain angle with her face sideways in order to minimize the opportunity. Needless to say Wednesday was a long day!! Thursday did not get much easier. Thursday morning my littlest nephew was in the NICU, my grandpa found blood in his urine and went to the ER, and our dog had an unknown tumor in her spleen that burst like an aneurism causing internal bleeding which ended up killing her on the way to the vet. So yesterday Mike took the day off and we loaded up to come home for the weekend and then to head to Cincinnati Monday for her appointment Tuesday. Yet, in the midst of this all we continue to praise! We know that God is good and we know that God is faithful. It has been a long process and it appears it will be getting longer soon, but none of this changes God. We are truly finding that when we give it to God and it is not our burden to carry but His that His yoke truly is easy and the burden is light. Once again we are living out God's promises  Matthew 11:28-30  “Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.  For my yoke is easy and my burden is light." We are tired it has been a long week but we are at rest and we do have peace. God has been faithful to us as we have been faithful to Him! Psalms 18:25 "To the faithful you show yourself faithful, to the blameless you show yourself blameless," We are able to walk in peace because we know that He is true and He will do what He has promised. We may not be able to see it all now and we may never but we know His word is true and we know what His word says, that is where our hope and comfort comes, not from the visible but from the invisible. "And we know that in all things God works for the good of those who love him, who^[i] have been called according to his purpose." Romans 8:28. He will work good out of this yet and He will get glory that I know and that is enough for me. If He is glorified then I am satisfied.