Surgery Day

We had Addie’s follow-up appointment with Dr. Little in Cincinnati for her arm on Tuesday. We started the day with a second EMG to see how her muscles were responding and how much they had healed. Almost all of her muscles had improved to at least 50-75% function if not all!! The doctors were surprised at how well she was doing. There was one muscle though that they were not sure if it was fully functioning or if the muscle above it just overcompensated because it does the same function. There was also one muscle that had no function. They decided on Tuesday that surgery would be our best option for dealing with that muscle. So today Addie had a single nerve transfer. They were able to take a nerve from nearby the affected nerve so she only had one incision on the back of her shoulder. The surgery went as well as they were expecting and Addie is now out of recovery and in her room. We are spending a night for observation due to the fact that we live so far away. In the midst of this God has once again given us peace and promises. One of the ones He gave me yesterday was 1 Peter 4:13 “But rejoice in as much as you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.“ And 1 Peter 4 :19 “ So then, those who suffer according to God’s will should commit themselves to their faithful Creator and continue to do good.” We may not understand why we go through hard times even when we pray for healing , but we still know that God heard us. We have been praying for healing and at the same time praying for more of His glory and sometimes the sufferings are the way that His glory comes. Our job is not to question the why of it, but to continue to trust our God who is faithful. We will continue to praise in the big and praise in the little. We are continuing to see God’s hand at work. Everyone that interacts with Addie can’t get over her sweet and content spirit. The issues and things she are dealing with should make her fussy but they don’t she still has a smile for everyone she sees. I prayed for her to have the temperament to handle her life and every time someone praises her sweet spirit I know God has answered. He really does hear us! And HE is working. Romans 8:28 “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.” He has a purpose in all of this and so we will just keep trusting and just keep praising!

9 Months!

Thought I better get this done while it was still September :) 9 months along! Addie is about 15lbs which is tiny!! She is much more active and desiring to interact with others. She has always been a little busy body but now even more so! She is able to sit up, which she enjoys immensely! She is her left arm more and more which is exciting. It is common place now for her to lift it up straight out and by her head when laying on her side or back! Addie is also becoming stronger with her fingers in the left hand. We know this is all from God. I was discussing Addie's improvement with her occupational therapist and she said that you could see the prayer was working! She said Addie was already further along then Angie anticipated without surgery! We are amazed at some of the results we have seen already. We are preparing now for her follow-up appointment in Cincinnati next week. We are going on Oct. 7th for and EMG and meeting with the doctor. That meeting will decide whether surgery is necessary at this point or not. If it is we will have surgery Oct 9th. Mike and I know the importance of prayer. We are learning that even when you don't see the answers the way you anticipate or as quickly as you anticipating it does not mean God is not working. It also doesn't give you a reason to quit praying! Matthew 7:7 "Keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you." (NLT). With this verse in mind we have asked to have Addie anointed again this Sunday. We have seen God answer prayers immediately after anointing her like with her heart and slowly like last time we did it for her arm. But we have seen God answer! We know that James 5:15-16 tells us "And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven. Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective." The prayer in faith by a righteous person (a person right with God & right with others) will be answered. God has been opening my eyes more and more to the need to immediately make things right with Him and others when I realize I have offended or handle a situation wrong. I want to live a life where my prayers are answered, even if I feel silly apologizing for something or it seems small to me. I would rather be over cautious than allow something to fester between me and others that then comes between God and I.  My heart's desire is to live a life pleasing to God and that means I have to swallow my pride and my desires to work toward my biggest goal of pleasing God. I have had to confess speaking out of turn to some and speaking harshly to others. I have had to confess to God not sticking to the fast He had called me to. I want to live my life as an open book that points toward Him! That leaves no room for silly selfishness but it  is impossible to live like that without God. It is a learning process and I am far from perfect, but I want to continue trying because I know by confessing my sins He cleanses me and I am perfect in His sight! I am learning though I must keep short accounts to do that! 1 John 1:9 "If we confess our sins, he is faithful and just and will forgive us our sins and purify us from all unrighteousness." What a mighty God we serve that is so able and willing to confess our sins if only we can swallow our pride in order to confess them! So I ask you now to continue praying with me for my sweet Addie, but pray from a righteous heart, one that is right with God and right with others. And pray anticipating to see the miraculous! Our God is a miracle working God! As for me if I have done something to offend or upset you please let me know so that I can make it right, I truly want to live out a life of love and want to have nothing between me and those in my life! Let me end with this song with sang on Sunday "I Will Look Up" by Elevation Worship. One of the verses really hit me "
'I will look back and see that You are faithful
I look ahead believing You are able
Jesus Lord of all, Jesus Lord of all' 
As we head into Addie's appointment and potential surgery we look back at the answers we have seen: her heart, movement in both arms & hands, and no genetic disorder! Then we look ahead into next week with her arm knowing how able and capable our God is and so we don't fear we praise, pray, and anticipate!!

What a Week!!!!

We have had an awesome week here! We started on Tuesday with a new occupational therapist. She has more experience with brachial plexus injuries and we thought that while our last therapist was good that Angie would end up being a better fit for Addie. On Tuesday also we were able to schedule Addie's follow up appointment for her arm. She will have an EMG and meet with the doctor on October 7th if surgery is necessary they scheduled it for October 9th. But on Wednesday Addie started lifting up her left arm!!! She has had good elbow movement but not much on her shoulder. Now she is able to bring it all the way up to the top of her head! It really was a miracle. She has been doing it continually ever since! Now that she is able to move it on her own we see that the nerves are working and she may just need to continue therapy instead of surgery!! The week continued on a positive note after meeting with her feeding therapist, Megan, the first time on Thursday. Megan thought we were right on track with Addie and is hopefully that as she continues to eat more solid foods her jaw will stretch and open more on her own. Then, today we finished the week with an appointment with Dr. Akeson, her orthopedic doctor here. It went even better than I could have imagined. He was pleased with her feet and we are just continuing to wear her braces at nap and bed time. I also was needing to talk to him about treating her hip in St. Louis instead of with him. He was very encouraging about the doctor there and agreed that would be the best place to have her treated. He also said he was more than willing to work with the doctor there and do some of the follow-up or casting after her hip surgery here if St. Louis is okay with the idea. It could not have gone any better! We have been blessed by wonderful doctors here who are willing to say that others can handle some of her issues better than them and then working with them to get Addie the best treatment! It has been such an exciting week. It is always so encouraging to my faith to see my prayers answered. We have had Addie anointed multiple times for complete healing and then specifically for her arm before our last appointment and we had not seen big improvements and then the day after we schedule her follow up appointment and potential surgery she begins to move it! God is giving her an awesome testimony of His healing power and His faithfulness. Even though things may not happen on our timeline He hears and He answers in a way that brings about His glory and His good! So we praise through it all!
            Psalms 100

¹ Shout for joy to the Lord, all the earth.
²     Worship the Lord with gladness;
    come before him with joyful songs.
³ Know that the Lord is God.
    It is he who made us, and we are his^[a];
    we are his people, the sheep of his pasture.

⁴ Enter his gates with thanksgiving
    and his courts with praise;
    give thanks to him and praise his name.
⁵ For the Lord is good and his love endures forever;
    his faithfulness continues through all generations.

We will be telling her story for years to come sharing with others because we are His and He has been faithful to us!

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.

7 Month Update (a little late!)

Addie is 7 and 1/2 month! She is weighing in now at 13 pounds and 12 ounces! She has started cereal and is really enjoying it and it seems to be helping her gain weight which is awesome! We need her to get closer to 20 pounds so that she can have her hip surgery done this winter. She is having occupational therapy and physical therapy each weekly now. We will also be starting some speech therapy soon because since we have started spoon feeding her we realized she is not able to open her jaw all the way. She has already made some improvement with her jaw as she stretches it to eat daily so hopefully therapy will be able to help fix it quickly. Addie is working on use of her arm and sitting up in her other therapies. She has seen some slight improvement on her left arm and is gaining strength in her core. I think she will be sitting up soon! We go on Monday to Chicago for her EMG to determine where the damage is so neurosurgeon will know where to concentrate during surgery. Please be praying about that also this week Addie and Michael got ear infections. They started antibiotics yesterday but if she has a fever or a cough still on Sunday we will have to cancel the EMG and reschedule. We are anticipating God's evident work and answer in her life. Her left arm is in His hands. Psalms 5:3 says "In the morning, O Lord, you hear my voice; in the morning I lay my requests before you and wait in expectation." This verse promises that He hears and also that I should be waiting anticipating His answer! This past couple weeks between realizing about her jaw, lack of serious improvement, and knowing these test was coming up I have been tested. Do I really believe what the Bible says? Do I really believe God is who He says He is? I do. If it isn't all true then it would not be worth living my life from. It is all true and that is why I can pray and wait in expectation. I can keep praying and keep asking because He wants to hear from me and He wants to answer just as He promised. Hebrews 10:36 "You need to persevere so that when you have done the will of God, you will receive what he has promised." We are in the midst of the persevering but He is faithful and we will receive that which He has promised! James 5:15a" And the prayer offered in faith will make the sick person well." We went to a prayer conference Sunday night and Monday and had Addie prayed over twice again. Now we are in the part where we must believe that He has heard and His answer is coming! We must wait in expectation that in God's great faithfulness He will do as He said because Luke 1:37 "For nothing is impossible with God." Or as it is in the New Living Translation "For the Word of God will never fail" He has already answered so much with healing her heart and arms, to the peace and grace He has given us to deal with everything so far we can expect nothing less in the days ahead! Even today Mike had a God ordained moment to remind him of the faithfulness of God. He was in a meeting and they began talking about Addie and the lady shared how God had miraculously healed her heart to the amazement of the cardiologist. She was in the operating room being prepped for surgery, after being prayed for a couple nights before, and as they were looking at her the doctor thought they had the wrong patient because her heart had no scar tissue or burn marks from her previous heart surgeries! She assured him it was her and he said he could not understand it because it looked like a brand new heart! Our God is good! So this is 7 months into Addie's life and He has been working! Can't wait to tell you what He has done by 8 months!