One week Post-op!

Addie had her surgery last Tuesday! The surgery took a little longer than anticipated because they had trouble getting the IV in. Once the doctor began though things went smoothly. He took part of her muscle from under her arm pit and pulled it back towards her shoulder in order to add strength to help her arm go up and out. It was very pleased with how healthy the muscle her transferred look so that is promising! He gave Addie a purple cast with Minnie Mouse on it so she is a happy girl! Addie has handled the entire time well. She has not cried or been in excessive pain. She laughs and smiles. You wouldn't even know she had surgery at this point except for her big purple cast! I can't believe how well she has handled it! We go back Sept 25th to get the cast off and a night time brace made. We will also meet with the genetics team that trip to get our results from the test done last December. Overall it has been a much easier surgery and recovery than I anticipated. It just reminds me once again how God answered our prayer that she would have the right dispostition to handle whatever she would face. At that point we had no idea there would be so many different surgeries in her future but she comes out of each one with a smile on her face.

One week till Surgery!

Somehow surgery is just around the corner! I cannot believe it is here already! Yet, it has been a long time coming. We started talking about this surgery last fall/winter. This surgery will be on Addie's left arm. He will be doing a tendon transfer where he will take tendon from under her arm pit and put it behind her shoulder. The hope is that with this surgery Addie will be able to get her arm up to at least 90 degrees right now she is probably around 30 degrees. Addie will be having surgery next Tuesday at 12:30 and then she will stay at the hospital overnight. She will have her left arm in a cast until September 26th. The cast will look similar to this picture but it will have a bar between her arm and her stomach part of the cast.

After we finish up this surgery Addie will have a 20 day break before we begin casting on her legs. I was able to get a second opinion on her feet from Dr. Dobbs in St. Louis. He thinks that if we do serial casting for 4 weeks on both feet followed by a small surgery on her Achilles tendon he can correct her feet. Serial casting is where we can the casts every week increasing the stretch each time. This was great news because the Dr we saw down here wanted to cut her whole foot and stretch every tendon which leads to a lot of scar tissue and issues down the road. So we have set things up with Dr. Dobbs and will be doing serial casting Oct 16- Nov 14. On Nov 14 she will have the tendon surgery. Dr. Dobbs will also be able take the plates out of her hips so she will not need a second surgery for that which is a blessing! The four weeks of serial casting will allow Addie to walk in those casts as they should only come up to under her knee. The 4 weeks after the surgery she will not be able to bear weight and the casts will come up to her hips!
Our little girl has a lot going on in the next few weeks/months! Thankfully we should be through all this mess by her 4th birthday!! There will be follow up and we may end up doing more surgery on her arm, feet, and hip after these but none of those are for sure! So we will get through these and enjoy a little reprieve!
We have enjoyed the last few months getting settled in our new home! We were able to take a vacation this summer as a family, and the kids and I took a 12 day road trip visiting all our favorite people! It has been a lovely summer. We have been blessed by our new neighbors, our new church family, and our new friends. It has been so crazy to us the way we have just fit in down here. We are truly grateful for the relationships we have already made and the blessings they have been to us! One of the truly sweet moments was this Sunday at church the Pastor wanted to have a special prayer for Addie and when he was anointing her he had all the children come and place their hands on her!That is what I want my children to see! Their prayers matter! God has a plan for each of them and each of us through the good and the bad!

But Jesus said, “Let the children come to me. Don’t stop them! For the Kingdom of Heaven belongs to those who are like these children.” Matthew 19:14

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

A little catch up and a little surgery...

Life has been crazy here! We lost my dear aunt and my grandpa this fall within two weeks of each other. That time was followed up by Addie learning to walk! Then she had a tendon release on her right foot which had her legs casted for the following two weeks. During that time we also did CIMT where we casted her good arm for two weeks in order to force her to use her weak arm. Then we followed up with Cincinnati. They have decided that some time next year they would like to do a tendon transfer on her shoulder to hopefully get her shoulder range to 90 degrees. While it is exciting that we can get so much progress it is an intensive surgery and recovery. Addie has also had two ear infections in the past two months since her tubes have come out. They have decided to put a new set in to decrease the risk of those and increase her hearing which will be done tomorrow. It is an outpatient procedure and should be done fairly quickly. Overall things are going well. Everyone is amazed at the progress in her arm and the amount that she can walk. She started walking the day of my grandpa's funeral. It was special because he had fasted and prayed one day a week for months for her to start walking. I wish he could have been here to see it, but how awesome to know that even though he is gone his faithful prayers are still being answered! The life he lived still affects our life through his legacy of faith and prayer and I am so grateful for all he has done for us and the example he was! James 5:16b "The prayer of a righteous person is powerful and effective." We appreciate all your prayers for her and know that her progress is because of God's hand. No one expected her to be walking like she is this quickly and possibly ever! God is good!!!

Easter Seals

One of the biggest blessings for Addie has been her therapy at Easter Seals; where she gets her OT & PT. Easter Seals has helped us find the doctors in Cincinnati and St. Louis. They have helped us get her trike, her arm splint, her AFOs, and her stander. They are the ones that have worked with us week after week to accomplish each goal she has!  They encourage me to do what I do at home and not give up even when results aren't coming as quick as I would like. They love on Addie and enjoy her. They also love on the boys and keep them involved as much as possible so they don't feel left out during all our therapy sessions. We love our therapists and are so thankful for the impact they have had in Addie's life. We know that God lead us here and this was part of the reason why. Not every city has such an awesome therapy center with so much knowledge and so many options. Easter Seals works with us, her doctors, and her other therapists so Addie gets a team approach. I can see how that has impacted her so much. We were given the chance to be a part of a commercial for Easter Seals. Sharing a little of our journey there and the things we appreciate. I thought I would share it with you. We know that God is the Healer but He has used Easter Seals in a mighty way for us!

Back in casts

Our sweet little Addie has been growing by leaps and bounds!  Physically she is getting taller and developmentally she is progressing like crazy! Addie has just lately learned how to get herself onto her knees and scoot. Then she mastered how to pull herself up and is cruising all over the furniture now! It has been so exciting!
Now though Addie is back in casts. Her physical growth mixed with the arthrogryposis and clubbed feet has lead to tight ankles again.Thankfully that can be corrected just through casting!

She will be in this set of casts for two weeks because the doctor is out of town next week and then will go into a second set for one week. She will probably need a third set especially on her right foot, but we will see. The boys were excited she had colors this time. Stephen picked the colors for her this set and Michael is picking the next set! The are also excited about drawing on them!
On another note we went to Cincinnati last week to see the geneticist doctor there. They agreed with the Seattle team and we will be doing a full genetic test on Addie, Mike & myself to see if there are any links to her conditions. They are in process of getting insurance approval before we begin. The hope is to do the blood work for the test in November or December when we would be returning her arm. The results will take 3-6 months because of the extreme detail of the testing.
It has been a lovely summer and Addie has been a champ through it all. We are so blessed to have the means to travel for her care! We are so thankful to the doctors and therapists here and there that God has lead us to. Addie is our little miracle girl! That she can smile after just getting her freedom taken away amazes me! Her attitude challenges me to rethink my attitudes in my struggles. We are so grateful for her in our lives and the blessing that she is!

Psalms 100

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;
    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.

Summer Time!

Life is busy in the summer. It actually amazes me how busy we get in the summer. We homeschool so we are home all the time anyways you would think it would slow down when we take a break from school but that never seems to happen! But I love it! We start our summer with a last minute road trip out to Seattle for Addie's appointment (original plan had been for Addie and I to fly with my dad). It was a great trip. We were able to stop and do a lot of sight seeing, hiking, and looking for animals as we went. We hit up the Badlands, Crazy Horse, Mount Rushmore, Custer National Park, Bighorn, Yellowstone, & Grand Tetons. Total of about 100 hours in the car in 10 days. The kids were amazing! They really enjoyed seeing the buffalo, elk, bears, big horn sheep, antelope & other animals. The boys loved it! We were so glad to be able to make Addie's appointment such a fun time for everyone! My parents also joined us and that was a big help with the boys. When Mike & I took Addie to the all day appointment in Seattle they were able to take the boys around the town.

Of course all trips have a few bumps along the road. Our first came the first night at the Badlands. We were coming down from a trail that had taken us up one of the rock formations and I was carrying Addie. I slipped and Addie hit her foot. She started crying and withing minutes her foot was black & blue and swollen. If you touched it, it was floppy. She cried the whole way down, the way to drop off the boys & my mom at the hotel and part of the way to the hospital(which was 35 minutes away). On the way there we started praying for her and had others praying also. When we got to the hospital the bruising was completely gone! They did an x-ray and nothing was broken! She was a little scared of anyone touching it for a couple days but she was fine! We know that God touched her!

The appointments went great. We were able to meet with a nutritionist, geneticist, upper orthopedic doctor, lower orthopedic doctor, occupational therapist, physical therapist, rehab doctor & rehab nurse. They were all very pleased with where Addie is at. They had few new ideas for us like adding a seat to her walker, some more hand exercises as she grows, trying a multivitamin, and a different genetic test to see if there is a genetic cause for her arthrogryposis. It was a good mix new ideas and confirmation that we had done everything necessary for her and were on the right track! We left feeling pleased with had went and so thankful for the doctors and therapist God had lead us to here.

The rest of the summer since coming home has been full of birthday parties, play dates, therapy sessions(we did another 3 week round with Addie's good arm casted and therapy 3x a week), and family time! We are leaving today to go visit my cousin and Addie is getting her first haircut! Life is busy but we are so thankful for how we can see God's hand weaving through each place and thing we go through. He has grown our faith and continues to allow us to use our story and Addie's to share about Him with others. I was just sharing with a lady from church this week how in James 1 it talks about considering our trials pure joy because the hard times are what grow our faith. One of the things I have realized is that with or with God you will face hard times. James 1:2 says "Consider it pure joy, my brothers and sisters, WHENEVER you face trials of many kinds." It says whenever not if, not maybe you will, but WHENEVER. The trials are going to happen to all of us but with God not only does he walk you through the trials so you are not overwhelmed. 2 Corinthians 4:8-9 "We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed." But more than that He redeems them! The trials are not useless as a Christian. Our faith grows through them as we are tested. In the trials we can see the miracles like we did at the Badlands and then He redeems those moments and brings His glory through them Romans 8:28 "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." Then we are able to share what He did in our own life with those around us that are hurting. We have our own testimony to share because He is a personal God. He desires a personal relationship with each one of us. A chance to meet our needs individually in a way that will bring us peace and Him glory! So as my life story shows we don't have to fear when the trials come but instead we can rejoice in His goodness and His plan! Isaiah 41:10 "
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand."