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.

2 Weeks of Crazy!

Life around here got a little hectic again! The past two weeks Addie had both of her legs casted and her right arm. Her feet lost some of their range of motion during the casting for her hip because she couldn't wear her braces to keep them stretched. We casted for 2 weeks to get back the range of motion before fitting her for new day braces. Her right arm was also casted for the past two weeks because we did CIMT therapy again. CIMT therapy is where you restrain or cast the good arm in order to force her to use the bad arm. We do OT 3x a week during CIMT which lasts for 3 weeks, 2 with the cast and 1 without. Tomorrow we start our last week and the arm cast comes off. Once again she handled all the casting really well as long as we took it off her arm so she could feed herself! That is one step of independence she was not willing to give up! It was a long two weeks but it is over!
We have also been dealing with some therapy with Stephen over the past few weeks because he has been walking on his toes. He had a therapy evaluation and will probably have a few therapy sessions. We also got fitted for some shoe inserts that should help limit his ablility to walk on his feet. He also has really flat feet so it will give him an arch.
Michael has been healthy and helpful lately. He is always trying to get Addie to laugh or help do something with her. Before the casts he had started picking her up and spinning her in circles, made me so nervous, but she loved it and would want to do it over and over again! We are also homeschooling this year which has been a challenge with all the therapy and hip surgery, but it is coming along well. He goes to a co-op once a week where he takes Spanish, Art, & Science.
Addie is doing well overall. She has made great strides and probably has close to 50 words she is using or starting to use. She loves to eat! I think she has hit a growth spurt because she is eating all the time and so much food! She has finally weaned which was a good step. She is able to eat most food now if we puree it. Her PT will go back to 2x a week this week to continue working on strengthening and stepping. She loves trying to walk!
God has been good to us. His grace and peace have carried us through and we continue to see progress. We follow up with the Ear, Nose & Throat doctor this week. Then in March we head back to St. Louis to check up on her hip. In May we travel to Cincinnati for a check up on her arm. Then in June we head to a special clinic in Seattle that deals specifically with arthrogryposis. Arthogryposis is a condition of stiff joints which impacts all of Addie's struggles the feet, hip, jaw, arm, and fingers. At this clinic she will see 8 different people with experience with arthogryposis. I am wanting to go to make sure that we are treating her appropriately and that we have not missed any issues that could come from the arthogryposis. I am excited and nervous at the same time about this trip.
It will be a busy Spring but as always God is walking with us and we can feel His presence daily. Thank you for all your prayers and care. Sorry I have been so long in updating!

Numbers 6:24-26
“The Lord bless you
    and keep you; 
the Lord make his face shine on you
    and be gracious to you; 
 the Lord turn his face toward you
    and give you peace.”