Neurosurgeon Update

I am so thankful for my little Addie and for all the wonderful doctors we have been able to work with. We saw the neurosurgeon, Dr. Lin, Monday. He was looking over Addie's left arm and trying to figure out what is causing her lack of motion. After his examination he has determined that from what he can see it is a brachal plexus injury, meaning there is some nerve damage up around her shoulder. He referred us to Lurie Children's Hospital in Chicago in order to do an EMG. The EMG is a test that will try and determine where and how much damage there is to her nerves. We are scheduled for that July 21st. They will have to put her under to do it and it should take about 45 minutes to 1 hour.  After that we will see Dr. Lin again on August 15th to follow up looking at the test results and any progress she has made. We will then decide if surgery is necessary, which is looking very likely. She would either have a surgery where he goes in a cleans up the scar tissue build up around the nerve or  a nerve graft where he would take a nerve from her knee and put it in her shoulder. We are also in the process of adding more therapy sessions we will be seeing occupational and physical weekly instead of every other week. Hopefully, with the increase in therapy we will see more improvement and as always the older she gets the more she is capable of doing in therapy. All of this information in the last couple of days has been a lot to handle! It can really stress me out when I think about all the Addie is going to have to go through. Surgery is never easy and even just having to be put under for the testing runs its risks. It is a scary time. I am tempted to start to question God, but then in the midst something happens that reminds me of just how far He has brought her. Do I hate that she has 2 or 3 more surgeries in the next few months of course I do. But I am reminded that almost a year ago we didn't even know if she would be able to use her hands. We didn't even know if she would live or need excessive heart surgery. As scary and time consuming as this stuff is it is all orthopedic! I may never know why God did not heal her all miraculously and that is okay. I don't act that way, but deep down I know it is okay. God has been carrying me through this. He and I have had some hard conversations because I just don't understand and they all end with "Okay God I don't get it, sometimes I don't even like it, but I trust you. I know you are here and have been here and there is a bigger picture that I am not seeing." Those are not easy words to keep saying as they pile surgery on top of surgery. It isn't easy to be joyful and happy in the midst of the scary, but I know who God is and in that I can rejoice. Philippians 4:4 "Rejoice IN THE LORD always. I will say it again: Rejoice!" I have been teaching the boys this memory verse and it came up in my Bible study today it and just hit me. It doesn't just say rejoice always but rejoice in the Lord. God doesn't ask us to rejoice because of our circumstances but to rejoice in Him regardless of our circumstances. There is a huge difference there. I can rejoice in Him because of who He is and then that gives me the freedom to praise Him in my circumstances because He has a master plan. He is working it all out for good because He is love. 1 Corinthians 13"4-8a ^" Love is patient, love is kind. It does not envy, it does not boast, it is not proud.  It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth.  It always protects, always trusts, always hopes, always perseveres. Love never fails." These are the characteristics of God. And He lavishes this love onto each of His children. It is an agape kind of love that only He can have and He has it for me and He has it for Addie. That is something I can rejoice in. I don't have to have all the answers because I know the one that does! He is not going to fail us!

Update from St. Louis

We spent the weekend visiting with family and taking Addie to another orthopedic specialist for her hip and feet on Friday. It was a long day but a good trip. The orthopedic specialist took some pictures and x-rays and then came in to physically exam Addie. He confirmed a lot of what Dr. Akeson, the orthopedic doctor she sees at home, had said. He agrees she will need a serious invasive surgery when she is closer to 20 pounds and able to handle being under for the 3 hours it will take for the surgery. This surgery will be to move her right hip into the joint. He also mentioned that her left hip joint is a little shallow so we will just have to watch that as we watch the right hip as she grows. He thought her feet were looking good, but did mention we have may to do the lengthening surgery on her right foot again. He told me a few new ways to stretch her feet to encourage mobility and length on them so we will try that and hopefully be able to avoid any extra surgeries. Overall it was a good appointment. It is always nice when both opinions are in agreement. Our big decision now is to pray about which doctor we should use for the surgery. The doctor is St. Louis has been able to specialize in pediatrics orthopedics where Dr. Akeson has specialized in orthopedics and does a lot of pediatrics but not as much as the other. Obviously there are positives about having it done here, but there is also a lot to be said about having someone who has worked more specifically with young babies. Either way we are still looking at surgery between 12-15 months most likely as Addie is now 13 pounds. But we are not fearing or stressing this fact we know that God is in control. As we left the appointment Friday there was a large rainbow just reminding us of God's promises in the past and the promises for the future. Psalms 52:8 "For what you have done I will always praise you in the presence of your faithful people. And I will hope in your name, for your name is good." Our hope is in Him as we wait for this surgery and as we head into her appointment with the neurosurgeon tomorrow to discuss her left arm. God has been with us every step so far so we praise and we know that He will continue to be so we hope in Him! We may not know exactly what is next or how it will all go but we know who is holding tomorrow. "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11.  We may not see it all now but we know that what He says is true and He has plans for us and for Addie. He will work all things out for His good and His glory. "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28.  He has been faithful thus far and we are continue to hope in Him and the truth of His word because we know the Bible is all true and it is always true!

6 months!

Addie hit 6 months this past Thursday. She is doing well in a lot of ways, but the older she gets the more you can her difficulties presenting themselves. Her left arm has really come a long way, but it still has a long way to go. Therapy is helping and we are continuing to follow up with doctors. Actually, we see the neurosurgeon here on Monday the 23rd to see if surgery looks like a good option. We are also going back to St. Louis this week in order to see the orthopedic doctor at Shriners on Friday. He is going to be looking at the hip, and also we will get his opinion on her feet. She is enjoying being free from the braces when she is awake and being able to wiggle her feet around. We are hoping to go on vacation in the near future and let her experience playing in the pool and the ocean.  One of her favorite things to do now is grab her toes with her right arm and play with them. I am sure most babies do this, but after having so much done to her feet it is exciting to see her be able to do that. She is still not sitting up, but that is one of the main goals we are working on in physical therapy. She is very attentive and that helps as we work with her. She handles the stretches we do at home and the weekly therapy well for the most part. She is just an amazing, happy, and content baby and for that we are so thankful! It is fun to watch her interacting with people now, especially her brothers! She is starting to laugh more often and the boys are the ones who get her to do it. They get so excited if they make her smile or stop crying. They are always trying to help or hold her and she loves their attention. Life stays a little busy but it is good. God has been faithful and as we go forward into each step He is walking with us. Thank you all for praying and as you think of us continue to pray as we travel this week and met with the doctor in St. Louis and the neurosurgeon here. We are hoping for some clarity and answers before we have to make any decisions regarding surgery for her arm and also for her hip. We are praising for the progress we have seen and praying for the rest!

Psalm 103:20-22 "Praise the Lord, you his angels, you mighty ones who do his bidding, who obey his word Praise the Lord, all his heavenly hosts, you his servants who do his will. Praise the Lord, all his works  everywhere in his dominion. Praise the Lord, my soul."

Neurology visit

Today we saw Dr. Twanow, a neurologist here in town. She was looking at Addie's arm for the possibility of erbs palsy, Addie's right knee about why she doesn't use it, and the possibility of Addie having arthrogryposis. Let's start with the easiest part first. Dr. Twanow today does not think Addie has arthrogryposis, a condition where the nerves didn't finish connecting correctly and so stiff joints and lack of movement occur. Addie is able to move her right arm and her left leg like a typical 6 month old baby so she would caution to guess the issues Addie has are more from her lack of space and movement in the womb. She also thinks that Addie's issues with her right knee come partly from the difficulty to move it because the hip is out of place and partly from weakness from her lack of movement in the womb and through the casting process for her feet. The arm was a little more tricky and we do not have definitive answers. Dr. Twanow said that it could be just weakness from her not being able to move it in the womb, but because of the order in which her movement has been coming back and the way she holds her arm the neurologist did not want to rule out erbs palsy. The big question we need to answer is if it is erbs palsy or not because that will change the treatment. If it is not erbs palsy then we would just continue with the therapy and stretches. If it is erbs palsy we may need to have surgery done to remove the scar tissue around the shoulder and possibly a nerve graft. The good news is that either condition she should get full use of her arm back, but we have to treat the right condition. Dr. Twanow has referred us to a neurosurgeon here in town to get his opinion on if Addie has erbs palsy or not. The difficult thing is there is not any easy test to tell us definitively if it is or isn't. I started to get anxious today as Dr. Twanow was telling me about the possibility of surgery but two things happened that gave me peace. First, as I walked out I was hit by the fact that I was at a neurology specialist and that they deal with brain issues I could have been there dealing with something much much worse that could never be fixed. Second, I headed onto the elevator and looked down at Addie and saw her pretty, little, bare feet and was reminded of how much God has already done. If you could see her feet today from her feet at birth you wouldn't even believe they were the same ones! It is a truly a miracle and an answer to prayer to see how far they have come! I was flooded with such a sense of peace and contentment that I have no desire to complain and no feelings of stress. We will continue to go down every avenue that is necessary to get the help that Addie needs, but we won't go it alone! God is carrying us and it is because we have so many family and friends that are carrying us to God. I have been reading the Psalms and these verse stuck out to me yesterday and even more so today Psalms 33:20-22"We wait in hope for the Lord; he is our help and our shield.  In him our hearts rejoice, for we trust in his holy name. May your unfailing love be with us, Lord,  even as we put our hope in you." Our hope is in God the one through whom all things live and breathe! He is the Alpha and Omega, beginning and end! If He is for us who can be against us? We are not living disheartened but we are living full of joy and peace. We have been blessed with Addie in our lives. So now we wait to hear when our appointment with the neurosurgeon is and we will go on from there. Our biggest prayer request right now would be that Addie sees the doctors that she needs to see. God knows the ones that will best be able to treat her conditions. Then, as we see these doctors that they would be granted wisdom and discernment to diagnose and treat Addie appropriately. We know that there is power when we pray together and we have seen that healing and helping power so much already. Let us not forget how much He has already done, as we stand in the midst of what we are waiting for Him to do! Philippians 4:4-7 ^"Rejoice in the Lord always. I will say it again: Rejoice!  Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." We are rejoicing, we are praying, and we are living in His peace! Thank you for joining with us in this! We are truly blessed by each and everyone of you as you lift up our baby girl in your prayers!

Feet!!

Friday was Addie's follow-up appointment about her feet. He checked out her feet and was pleased with how they are coming along. Addie now only has to wear her braces at night!!! This will continue most likely until she is 2. She has been enjoying her little bare feet the last couple of days. While there I also talked to Dr. Akeson about his plans for her hip. At this point we are still waiting for the hip bone to calcify which typically happens between 12-15 months. He will then do an invasive surgery to put it into place. After the surgery Addie will be casted from her belly button to her ankles for 6 or 10 weeks and afterwards may have a brace for a month. We are going to Shriners in St. Louis on June 20th to see the orthopedic doctor that we were referred to after her last appointment in St. Louis for her arm. We see the neurologist here on Tuesday for her arm. This may lead to some additional testing to determine if there is any nerve damage or not in her left arm. I will also be talking to him about her lack of movement on her right knee. We have started physical and occupational therapy every other week, so each Wednesday we do one or the other. We are continuing to pray for her complete healing, and rejoicing each step of the way! God is working on her. We have seen more movement with her arm! We have seen extreme healing and changes on her feet! We have seen more motion on her right knee where there had been none! God is working it is easy to overlook the small answers, but when you sit down and review it is evident how God has been answering us! Philippians 4:4 " Rejoice in the Lord always. I will say it again: Rejoice!"