Back to Reality!

Let's play catch up! In January Mike and I moved our family down south. He was given the opportunity at a bigger pharmacy and it was warm so after much prayer we took it! We bought a house the end of January and he started February 5th. We decided to take the first few months and just get adjusted at the new house, find a church, get to know the area before we got started with the therapy and doctor visits.
I didn't realized how much therapy and doctors had taken over our life until we had a break. That was just our normal. The kids and I decided to make the most of the time we had off. We made some friends. We went to the zoo, the science center, and a reptile discovery place. Got all unpacked. Found the nearest parks, libraries, and grocery stores. We went to the beach, swam in the pool, played at a splash pad! We also signed the boys up for Brazilian Ju Jitsu which they are just loving! Life has been fun and exciting! We were so blessed to have the time to just enjoy life with the kids.
There is a season for everything and in June our seasons changed back to establishing doctors and therapies. So far we have seen a doctor for her feet, a doctor for her hip, a neurologist, had her OT eval and session, and her PT eval and sessions. Still scheduled in the next few months is eye doctor, pediatrician, second opinion on her foot, and speech eval. Needless to stay life has gotten hectic again!
The first doctor we saw was a doctor for her foot. He was not pleased with how her right foot is doing. Between the clubbed foot and arthrogryposis she is walking on the side of her foot and not on the bottom. He recommended a very intrusive surgery on that foot. He would basically cut her foot from ankle to ankle and stretch all of the tendons in the foot. She would have pins in her foot and be casted for 6 weeks where she could not bear weight on her leg. She would then get the pins taken out and be casted in a walking cast for 2 weeks. Her left foot looks much better but he would still probably do another achiles' tendon lengthening while he had her under for the right foot. Mike and I were not at all prepared for that suggestion. This is a surgery her previous doctor had wanted to avoid at all costs because of the chances of severe arthritis in the foot as she ages. We see that it is much worse now and may be necessary but have decided to get a second opinion before we go that route. We will see a doctor that works with arthrogryposis and clubfeet in September for his opinion before we make that call.
The next doctor we saw was her hip doctor. Addie's previous doctor recommended him so that made me feel better about our choice. He took some x-rays and looked at her. He also then called her previous doctor and sent him the current x-rays and discussed her care before we made a plan. After he called the previous doctor he called me personally. I am feeling very confident in her care with him which I am thankful for! The doctors have decided that it is time to get the rod out of her right leg that is still in their from her hip surgery. We have a little time so we will do it sometime this winter. The hip doctor and foot doctor work in the same office so if we do decided to do the foot surgery we will be able to combine the two operations which is a blessing!
The third doctor we saw was a neurologist. We were asked to see him to have him look at her spine and see if there is was any other nerve damage outside of her left arm that we did not know about. I liked him he was very thorough in his questions and has ordered a brain MRI and a spine MRI that will be done July 25th. He also ordered some blood work to double check on any low muscle tone disorders that may have been missed.
We are continuing her brachial plexus arm injury care with the doctor in Cincinnati. We already had plans for a tendon transfer there and want to continue on with him for now. We are planning to have her surgery there at the end of August. It will leave her in an arm spica cast for 4 weeks. The hope is post op she will be able to lift her left arm all the way to her shoulder and have around 90 degrees range of motion which will help her functioning a lot as she grows with hair care, dressing, driving, and things.
The OT & PT therapists have been wonderful so far and I am sure the speech will be too! So far Addie is doing PT every other week and will start OT after she is released from her arm surgery.
It is hard to switch all the doctors and find people that we trust to continue her care. She has been blessed by so many good and loving people for her first three years and when I think of where she started I can't believe how far she has come! This is the girl who they thought may never walk and now she can take a few steps without her shoes! This is the girl whose arm didn't move at all and now she has so much function and uses it constantly to carry her toys around! She couldn't open her mouth to nurse and now she loves pizza and hamburgers! She didn't make any noise at all when she was first born and now she sings and prays and talks all day! It is hard knowing that there is still so much she has to go through. It is hard to watch her hurt or not be as fast as the other kids. But through it all I can see God. She has such a joy about her! She smiles and laughs and gets others to join her. She is three and it shows but she is mostly a good sport through things that would be hard for us as adults to handle. She loves to play tag with the neighbors, swim in the pool, run through the splash pad, climb her self around at the park, and feed herself! She is big and she knows it! You tell her she can't do something and she goes out and does it. Actually it was after the doctor mentioned that she may never walk without braces because of her foot flexion that she started stepping without her braces! She has taken to heart Philippians 4:13 " I can do all things through Christ who strengthens me."
As I said I enjoyed the break and I didn't realize that weight I carried from her doctor appointments and therapy but it is because of that same verse " I can do all things through Christ who strengthens me." Philippians 4:13. He has carried us through each storm and some hurt and I am not excited about the future surgeries but I know that I am not alone. He has brought us this far and He won't let us down! We continue to pray for healing as we read and remember the healing He has done and He has promised. We stand on the truth of His love and His strength. He brought to mind this verse so I will leave you with this! Know that through it all He loves us and is good!

The Lord has appeared of old to me, saying:
“Yes, I have loved you with an everlasting love;
Therefore with lovingkindness I have drawn you.

Jeremiah 31:3