Cast On, Cast Off, Cast On...

   We had a very busy October-November. October 16th -November 14th Addie had 5 sets of casts. The first four were changed weekly and the last was following her Achilles' tendon release and will stay on until December 8th. It has been a crazy and busy couple months. The time during the weekly casting change the kids and I just bounced around the Northwest area from house to house.
   We finally came home for a little over 2 weeks before we head back up North for her arm and foot follow-up. She has been doing amazing with her arm! She has almost 90 degrees external rotation and a regular 30-45 abduction. We are pleased with the results so far and anticipate more as she continues to strengthen it!
   The Dr who did her feet was also pleased with them. He said he got full correction through the surgery! We have never had that before so we are excited to see how they look after the casts come off! Their office told us that the typical plan is for the child to wear braces for 3 months after surgery day and night and then switch to just night time ones. Addie had started to walk a bit without her braces right before casting but it was all on the side of her foot and was very awkward and uncomfortable. We are hopefully that now with the correction she will be able to walk on her feet correctly without braces in a few months.
   The plan after our next trip is to come home and have multiple therapy sessions a week. The goal is to continue 1 a week for OT, 2-3 for PT, and 1 for speech. It will be crazy for awhile but the hope is that the PT will help keep the correction we have gained from surgery in her feet. The OT we are hoping will continue to help strengthening her arm so she is able to increase her range of motion. The Speech is just to help get all of her syllables out so she is able to be understood more easily.
   It has been an incredibly difficult and exhausting 8 weeks but God has been faithful. We are so thankful we were able to travel to see this doctor for her feet and the one for her arm. We are amazed by her continued improvements! I don't want to have to be gone that long from home again, but if she is able to walk without braces like they anticipate it will all be worth it!
   This is the verse God gave me during our 5 week trip "In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials." 1 Peter 1:6 He is saying that we rejoice in our salvation in spite of the difficulties of life. We all face our difficulties but for those of us that have found our hope in Jesus we know there is a greater purpose. This is not all there is. When I was gone for so long I had fun and did things that were nice but I wasn't home. It was all off a little because I wasn't where I belonged. That is how life on this world is supposed to be for Christians. This is not our home we are aliens here, Heaven is where we want to be. We can have fun and experience things but our goal should be to do what needs to be done to get home. I just wanted to get her casts on and her surgery done so that I could go home. When there is an end goal in sight it makes the trials not as bad. We can rejoice because we know that He is leading us somewhere for His glory and in the end we will be with Him. You should all know one of my favorite verses by now 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." That time away wasn't easy, it wasn't ideal but God had a purpose. I was where I needed to be and I know a few of the reasons why. When we are following Him, He leads us places we would never go alone but we are not alone! There is good that has come from that time away and there is more that is coming. So in the midst we must choose joy so that we don't miss an opportunity to bring Him glory or to share with others that He has put in front of us!

Psalms 23

¹ The Lord is my shepherd, I lack nothing.
²     He makes me lie down in green pastures,
he leads me beside quiet waters,
³     he refreshes my soul.
He guides me along the right paths
    for his name’s sake.
⁴ Even though I walk
    through the darkest valley,
I will fear no evil,
    for you are with me;
your rod and your staff,
    they comfort me.

⁵ You prepare a table before me
    in the presence of my enemies.
You anoint my head with oil;
    my cup overflows.
⁶ Surely your goodness and love will follow me
    all the days of my life,
and I will dwell in the house of the Lord
    forever.

Hip visit, Cast-off & Genetics

We made quite the trip last weekend. We first headed to St. Louis to follow up with her hip doctor.  The doctor down here anticipated surgery and quickly which was stressing me out because we still weren't through her arm surgery and we already have her feet casting and surgery scheduled. Thankfully, it turned out that the doctor in St. Louis disagreed! Praise the Lord. While he still thinks surgery may be necessary to help reshape her hip and also to get the bar out it is not in such as rush as I felt from the doctor down here. He told us to first finish her arm, deal with her feet and come back in a few months. After that appointment we spent the weekend relaxing with my Aunt, Uncle and cousin.
Next we headed on up to Cincinnati for appointments 2&3. The cast came off and her arm was looking great. They were able to quickly make her the nighttime brace, give us some directions for stretching, and they sent us on our way. We were able to spend the rest of the day at the zoo with the kids and Mike's parents. It was a nice break in between all the visits. Tuesday we got up and headed to genetics, to get the results from the genetic testing we did last December. It turns out they could not find a genetic cause for her issues. In some ways it was a little disappointing to have no more answers but in the end it is a positive that there was nothing else wrong with her. It appears to be mostly orthopedic and nerve injuries. This means we are treating her correctly and we have not missed any steps we should have taken.
I am so thankful to have all that done! It was a busy and short trip with a long drive, but God was once again faithful. We head back up to St. Louis in October to start 4 weeks of weekly casting for her feet followed by a tendon release November 14th. The tendon release will leave her in casts where she cannot walk for the following 4 weeks. This healing process is not over yet but we know that we have the Great Physician on our side! He has walked with us each step of the way and Addie has passed through each step with flying colors and a smile! While we are not looking forward to the continued trials Addie has to go through we are thankful for each doctor, nurse, and therapist who has helped us to get to where we are on this journey. I believe that God has directed us each time to the people who we needed at that time and I am so thankful for all she is able to do because of His healing hand! I know He is not done with her yet. The road has been long and bumpy but each new milestone she takes is so worth it!
We are continuing to pray that God will heal her hip and the second surgery will not be necessary. We are also praying that the results from her arm surgery will be even more than the doctor imagined because we know that we serve a God who can do more than we can imagine! We are also praying that the doctor in St. Louis will be able to correct her feet the way he thinks he will and that not only will she walk without falling but that she will run! Nothing is too big or too small for Him so we ask and we give thanks!
^" Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, ²¹ to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen." Ephesians 3:20-21

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