2019 A New Beginning

Is it wrong to say I am so glad 2018 is over??? Seriously it was probably one of the hardest years of my life. We have dealt with 2 surgeries in St. Louis. 16+ weeks of casting, traveling almost every month for some reason or another, multiple therapy sessions a week, and multiple chiropractic appointments a week. For the past 10 or so weeks we have had 5 appointments a week! Not to mention homeschooling or the boys Brazilian Jiu Jitsu. The balancing act we have had going on trying to get Addie the best care we possibly can, teach the boys what they need to learn, and still allow them all time to be kids has been exhausting. I don't know if part of it is their ages or just how long we have been dealing with all of this but this year I lost it. I have dealt with exhaustion and anxiety to a degree I have never dealt with before. And yet I know God has seen me. I had to deal with the crazy traveling and surgeries this year like never before but Mike was able to be with me for most of it. I don't know how I would have made it through without him. We also have had multiple people those we know and random strangers who have blessed in many different ways. We were able to sneak in an extra beach vacation with my Aunt, Uncle and cousins this year right when we needed it. We have had people come and clean our house, do our laundry, bring us food, and give us money. This year has been a great reminder of how we need to listen to God even when it doesn't make sense because you don't know what doing or saying something He tells you will do for the person who is receiving it. We have had Words of Life spoken into us. We have had small phrases spoken to us that God has used to remind us of His faithfulness and that while we are here in the waiting so is He. While our time is not His time, He is still working. That even when life hurts and I can't understand why He doesn't just fix it now like I know He could, He has a plan. Sometimes I get so stuck on my plan that I forget to wait patiently for His plan. My verse for 2019 is Romans 12:12 " Be joyful in hope, patient in affliction, and faithful in prayer." I know 2019 will have ups and it will have downs but I am going to hold strong to Jesus through joy, hope and faith! He is the only thing that is worth holding onto each and every year!
Addie is doing well. Her hip surgery and the chiropractor have really helped her stand up much straighter. Her arm is functional yet we are desirous of so much more! There is a potential surgery in Jan 2019 to see if we can get any more function out of it. Her feet looked perfect when we got out casts in November sadly though her right foot is already starting to turn in. We also follow up with that in January. I won't be surprised if we have to do some more casting in order to correct it.
Regardless of the ups and downs I will choose to sing praise! 1 Thessalonians 5:16-18 Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus."
My planner for 2019 because I am sure I will need the daily reminders!

 

Faithful and True

Feet that couldn't walk

Arms that didn't move

Mouth that didn't talk 

And a jaw that couldn't chew

She prays and she fasts

Trusting that it would happen at last

Movement would come

Talking would start

God would be felt

Deep in her heart

Little by little change did appear

Proving her God had once again drawn near

The sorrow is strong

Tears have fallen down 

She holds on so long

For her God has promised a crown

Trusting one day the storm will be past

His hope holds her steadfast

Yet for now the storm rages on

Traveling here and traveling there

As foreward we go

 Castings and surgeries are done everywhere

Hard it may be yet it is not just her story

The end of it all is to show the world His Glory

 

God will shine bright

Then there will be no night!

He is Faithful and True

And as always will follow through

He has promised rest

As we stand strong through the test

2 Weeks Post Op

Addie is two weeks post-op. She is doing amazing!!! Her pain is under control and she is pretty happy overall.  The doctor in St. Louis said if the doctor at home was comfortable taking over some of her care we would not have to travel back to him until this summer. So we went Monday for her 2 week post-op X-ray with our doctor down here. He was more than willing to take off her cast for us so that was set for May 7th! He is happy to work with the doctor in St. Louis to make sure Addie gets the best care she possibly can without us making unnecessary trips back and forth to St. Louis. We have truly been blessed with great doctors and nurses that are willing to care for Addie and make things as simple as possible for us! Even in the middle of the crazy year we have had full of surgeries and casting God has blessed us with people who are doing their best for Addie!

Don't Lose Heart

I think the thing I have learned most during our life lately is perseverance. Perseverance according to dictionary.com is "a steady persistence in a course of action, a purpose, a state, etc., especially in spite of difficulties, obstacles, or discouragement." I've learned I can't do it alone and by my strength but only by God's. I've learned that whether life feels up, down, or sideways I can rely on Him. I sometimes think 'why God don't you just fix this or fix that' but He has been showing me the beauty that comes through perseverance. This past year has been one of the hardest of my life. We moved 1000+ miles away from our home, and family, and friends. Mike has worked crazy hours at his new job trying to get thing sorted there. We had no church, no friends, no activities, no doctors, no therapists. It was intense just getting settled and sorted but I saw God's hand of blessing through it all. Then, we had two surgeries both up north which resulted in a 5 week journey of traveling and house bouncing for me and the kids and Addie being in cast upper body then lower body for about 13 weeks total. Things finally had settled down and it was the holidays. We made it through that to be hit with an unplanned trip up north to follow up on her feet and hips. That lead to another surgery. We found out that Addie will need an intensive hip reconstruction followed by 5-6 weeks in a spica cast. Which will be followed by 2-3 weeks of foot casting again to stretch the feet back out. We are also in the process of relocating yet again. We are not sure what exactly our future will hold but we know Who hold our future. 
This is where the perseverance really kicks in. We must stay steady, I can't give up hope, I have to keep pressing on and trusting that in the midst of this God has a plan. That some how He is working it out for good. It may hurt now but He has a plan. I must keep this as my focus in spite of the difficulties, obstacles and discouragements we are facing. I can't lose heart. God brought me to a couple of verses this week as I digested and prepared for the next step of Addie's journey.  One verse was John 16:33 "In this world you will have trouble. But take heart! I have overcome the world." Sometimes when we are facing so many difficult things it is easy to feel like we must have done something wrong. This can't be what God wants for us. It should be easy and comfortable when we are doing the right thing, but this verse reminds us that is not always the case. Just because life is difficult doesn't mean we aren't exactly where we should be! We WILL have trouble not if, not maybe, but we WILL. This is normal, this is okay. God is still good, He knew this was coming and He has a plan. I have to persevere and hold on to that truth and not get pushed around by the ups and downs of life.
The other verses He lead me to are Hebrews 10:36 "You need to persevere so that when you have done the will of God you will receive what he has promised." & Hebrews 10:23 "Let us hold unswervingly to the hope we profess, for he who promised is faithful." We have to persevere and hold onto the hope that He gives us because He is faithful through it all! Continue to pray for us as we travel back and forth and go through this surgery and recovery time. We will be doing our best to hold unswervingly to Him, but as you all know in the midst of the trials it is easy to be swept away in the emotions and exhaustion of the day to day. We know God is faithful and He will carry us through each step as He always has. We must not lose heart!  

My Baby is 4!!

How does time go so fast? How have we so quickly gone from this...

to this...

We had a rough couple weeks after getting out of her casts but slowly but surely she is back up dancing and singing her way through life!! The doctor was pleased with how well her feet look and we are doing extra therapy and lots of stretches to try and keep it that way!

The arm doctor was amazed she had gained so much external rotation or ability to move her hand out. He is hoping the abduction or upward movement will continue to come in the next 4-6 months. While we were in Cincinnati getting her check up they were filming their annual holiday video and so we got to be a part of it which was fun for the kids. If you want to watch that here is the link...https://www.youtube.com/watch?v=ZHcJ8s1wqhA&feature=youtu.be

We got home from our quick trip to Cincinnati and St. Louis and it was Addie's birthday! We had a fun day at the Science Center, out to dinner, walking around seeing lights and of course cake and presents!! I can't believe she is 4! But I also can't believe how far she has come. Sometimes it is discouraging because there are things that set you back or the progress is slow but looking back this past couple weeks on old pictures and videos reminds me just how far she has come! I am so thankful for all God has done in her life!

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