Going Forward

We have had some great news this week! First, her hip looked great! He wants to take the plate out with in the next 7-8 months because it has served it's purpose and the hip looks like it should! Second, her feet are responding well to her casts and the doctor does not think another surgery is necessary at this point! Praise the Lord!! Third, she is functioning well with the recovery of her arm. She has not lost much motion at this point and we are expecting all she had plus more to come in the next 12-18 months!! I was very nervous about all of these follow-up appointments but God has gone before us and things are going smoothly!
We are enjoying some time with family and getting into a routine at our home away from home. Addie has one more set of casts next week and then we get them off the following week and will be able to travel home again! Praising our God. The road has been long but He has been faithful!

First Casts!

Second set!

Continues to be Faithful

What a faithful God we serve! Once again He has answered our prayers! When we met with the Doctor he said that he was able to clearly see which nerve to take and which nerve to connect to it that would give us our best chance of extra motion. There was no debate but a very definite answer! We are now on our way to my brother's house to relax for the weekend before we head to my Aunt's. She has been feeling well so far with no nausea and no significant pain. We are so thankful for your prayers! Even though it was mentally tiring and physically exhausting our God has been with us. We know our God is working though now we must wait for the end results we are so thankful for His direct answer to our prayers for wisdom and clarity today. Psalm 46:11" The Lord Almighty is with us; the God fo Jacob is our fortress."

Surgery #11

What is a year without a surgery? We wouldn't know! Once again we are headed to Cincinnati trying to give Addie her best chance at function with her arm. The doctor has determined we have another chance at a nerve transfer into her deltoid from her tricep. So tomorrow morning after much prayer and wrestling if this was the right decision we are putting our sweet Addie under again. We asking for prayers that the doctor is able make the best decision on which nerve to take from the tricep and where to connect it on the deltoid. We will have a loss of function at first and won't see the full results or possibly any improvements for 12-18 months as we wait for the nerves to grow. We are trusting in the Great Physician to do what only He can do and to get glory through this trial. We covet your prayers for a successful surgery and especially no nausea after as she has struggled with that the past few surgeries. If there is no nausea we will be able to head to our family and recover for a few days before we head to St. Louis for more casting/ possible surgery and hip follow-up. Before her first arm surgery God gave me this two verses Hebrews 10:23 "Let us hold unswervingly to the hope we profess for he who promised is faithful." And  Hebrews 10:36 " You need to persevere so that when you have done the will of God you will reciere what He has promised." While we have had multiple surgeries since then these verses are still true. Our hope is eternity and His will is to walk through this with praise so that we can glorify His name to all we come in contact with.

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

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."

First Steps!

So a little over six weeks ago I shared how Addie had started walking in her walker. She has continued to improve and now has free wheels so she can go wherever she wants in her walker and she loves it!! We got her a knee brace and she has started bending her knee so much more! She can now pull herself up onto both of her knees and holding on to the couch crawl around up on her knees! It has been amazing! But yesterday after a weekend of seeking God's direction and presence in our lives Addie took her first steps!! She stood on her own for about 2 seconds 2 weeks ago and yesterday she was standing for 10-15 seconds and then took a few steps!! So many kids with arthrogryposis do not walk especially unassisted! But here she is 2 and able to take a few steps. As her strength grows so will her walking!! We are so thankful to God for His healing hand on our precious daughter! The therapist yesterday said she can never predict what Addie will do and I told her she has too many prayers to be predictable!! When you bring your concerns and petitions to the Almighty Healer things happen!
Hebrews 10:23 "Let us hold unswervingly to the hope we profess, for he who promised is faithful."

 

Psalms 100

1 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^[a];
    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.

We are His. In the good and the bad He is worthy of praise and our trust! He is faithful to us. He is healing her legs and we are trusting for her arm and shoulders. She will outshine the expectations set before her because He will shine through her and His name will be praised through each phase of her journey. He is healing her! The doctors and therapists are all a part of His healing. I am reminded yet again He is the Healer and our trust is in Him. After our last appointment in Cincinnati the doctor told us that at this point there is nothing else he can do for Addie's arm. While she has improved a lot she does not have much movement or strength in her shoulder. God asked me as I sat there if I was trusting Him to heal her or the doctor. The answer was Him! The answer is always Him!! And after that look at her walking! As I look back on this blog I can't help but realize what a big miracle it is that she is stepping already! It was only a few months ago that she could not even stand and move the gait trainer that pretty much held her up and now she is walking solo! My heart is rejoicing in my God! I am so thankful for His hand on my baby girl! What an awesome God we serve! 

Walking, walking walking!!!!

As I got on here to update I looked back at my last post. First, I am sorry it has been so long! Second, being reminded that it has only been two months that Addie has been out of casts and standing makes today's post even more amazing! Let me fill you in on the past two months. We have been sick, well, sick, well and sick again! We also have done some traveling! We went to Florida the last week of February. That was just a wonderful time for all of us to be able to relax and enjoy each after the chaos that was January! The boys are such troopers with everything we have to do with Addie it was nice to have some down time to just be a family. Next, we went to St. Louis the beginning of March and Addie got an all clear pass on her hip and doesn't have to back for 9 months! Then we went to Indiana for the weekend and had a great time with family and friends! We are home once again probably until the beginning of May when we will head to Cincinnati for the next follow up on her arm.
   Addie has made some amazing progress these past two months! She has moved to stepping when she holds you hands and today she did this!

I was crying at the Children's museum because I was so excited to see her walking for alone for the first time. We have tried a few other walkers but she would fall or get frustrated and today she just took off. This video was from the beginning by the time we left she was doing even better!
  As if her walking wasn't enough Addie also got her specialized tryke this week! We are so excited about this. Her right knee really has a hard time bending so we know this is going to help her get used to bending and strengthening it. Also, having to hold the handle and use her left arm! Now if the weather would just start acting like April!

We are so blessed to be here in Peoria. The Tryke was made by AMBUC and they found us a sweet sponsor who helped with the cost. She has been giving money in honor of her mother who loved the little ones especially little girls! We are so blessed by that! The Easter Seals here is amazing! They have helped us so much with Addie with the Tryke, her braces, her splints, and of course the therapists. We didn't know what God was doing when He brought us here but I see Addie on her tryke and walking in her walker and I see how even 4 years ago before we had a thought of Addie He had a plan!  "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. ¹² Then you will call on me and come and pray to me, and I will listen to you. ¹³ You will seek me and find me when you seek me with all your heart." Jeremiah 29:11-13. 
We were seeking Him then and he had plans for us. He has continued to show himself to us as we have sought after Him!  These days are long and hard sometimes but when I sit I can see how much He has been working for us! Psalms 103:1-2 "Praise the Lord, my soul; all my inmost being, praise his holy name^. Praise the Lord, my soul, and forget not all his benefits"

A Miracle Day!

Yesterday was an amazing day! I just had to share. After our two weeks of 3 limbs being in casts Addie was finally set free yesterday! She started the day standing at her kitchen doing OT therapy. We then headed to Easter Seals to be fitted for new braces. While we were there Addie did this!

SHE IS STANDING BY HERSELF!!! Then, we went to the Children's museum and she stood all day. When we got home she stood for almost 2 minutes BY HERSELF!!! This is not something she was doing before casts. This is not something she should be doing right after getting her casts off where her legs should be weak. This is a direct answer to prayers! She was also stepping around at the museum just holding onto my fingers! God is still working on this baby girl and it is amazing to see! After two really long, hard weeks God has blessed us yet again!

Psalms 146:1-2

Praise the Lord.

Praise the Lord, my soul.

I will praise the Lord all my life;
    I will sing praise to my God as long as I live.