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.”

Happy Birthday Addie!!

On the eve of turning 2
I can loudly say "no!"
On the eve of turning 2
I am ready to go.
Though I mostly roll and crawl
I can get quickly down the hall!

On the eve of turning 2
My hip has no brace.
On the eve of turning 2
My feet are held firmly in place.
I stand in my stander to practice bearing weight
Can't wait to walk and see my new gait!

On the eve of turning 2
my arm can go up!
On the eve of turning 2
I can hold my own cup!
My fingers are better at grasping my spoon.
Feeding myself feels like I am on the moon!

On the eve of turning 2
My past has been rough!
On the eve of turning 2
I know I am getting tough!
My brothers love to make me smile.
Especially when we play dog pile!

On the eve of turning 2
God is using me!
On the eve of turning 2
I am a miracle to be!
God has been faithful and true.
I know that He loves me and He loves you too!

Addie, Addie, Addie

Our sweet little girl is such a trooper! We are on our last day of her 2 week program of casting her good arm. The Thursday before we started this program we tested out the cast and she freaked out! Sunday November 15 the day before we started the casting we had Addie anointed. God answered! Addie has not cried at all because of her cast. She has been such a good sport through it all. This week we have therapy 3x again in order to spend the week working on using both arms together more. I think we will also try and do a few measurements to see how much use of her arm she has gotten from this casting process. The hope was that by her having to use her left arm she would strengthen it allowing her more mobility.
We also had some crazy stuff happen this week. On Tuesday Addie woke up with blue hands, lips, and feet. It was scary and I had to rush her to the ER. We spent most of the day there so they could watch her hear rate and oxygen levels. They also did an X-ray to make sure she did not have pneumonia. They could not find a cause for her blueness but since it had gotten better by the time we got to the hospital and her heart rate and oxygen levels stayed good while she played and while she slept they determine she was probably just cold. It was scary to go home and that night I checked her many times during the night to make sure she was still breathing. They said the littler the children are the easier it is for their blood vessels to close up and turn the the extremities blue but that had never happened before!
This week we are headed back to St. Louis to do a follow up on her hip. I think after this appointment we will cut down on the time she wears her hip brace. I also think we will meet with the physical therapists there in order have a better understanding of what she can and can't do at this point. The hope is then to start her physical therapy here at home the following week based on the restrictions we are given from the St. Louis therapists and doctors.
So needless to say this Thanksgiving we are thankful once again for the way God has touched Addie. Her attitude in the casting and then the fact there was nothing wrong at the hospital is His grace! Psalms 136:1 "Give thanks to the Lord, for he is good."

What a Month!

Addie is officially out of her cast. She has moved onto a hip brace for the majority of each day for the next 5-6 weeks. After that point she should start wearing it just at night. She has been in quite a bit of pain because the leg was so stiff after the cast, but the pain is finally seeming to improve and her leg seems a little looser as we do the stretches. We go back December 18th for a follow-up. We are hoping to get a lot more answers that appointment because we left the last appointment unsure of how much she is capable of doing regarding crawling, weight bearing, & walking during her different stages of recovery. Shortly after getting the cast off we went to Cincinnati to follow-up on her arm. The doctor decided we did not need to do another nerve transfer because of how well she is doing when she is in gravity eliminated positions, like laying on her back or side. She is able to move the arm to 150-180 degrees in those positions, but as soon as she sits up she can hardly get it up which shows it is a strength issue. At this point we are going to continue with her therapy and e-stem to work on the nerve and muscles. We are also going to be trying something new next week. It is called CITM. CITM has us cast her good arm, right arm, for 2 solid weeks so she will only be able to use her left arm to do things. We will have intensive therapy (3x a week) those two weeks working on strengthening and using her left arm. It will be followed by a third week of intensive therapy (3x a week) with out the casting on her arm. This is a method that her therapists here will do but the doctor in Cincinnati also uses this method for improvement. We will do this now and hopefully see some improvement and it is a method that we will probably use again in the future. The doctor there while pleased with her progress and abilities does not think she will ever have full function of her deltoids on that arm. It tempts me to be discouraged hearing that but I know that we have access to the great healer! I am not giving up on praying for complete healing while doing everything here that I am able to encourage improvement! We would appreciate prayers during the next few weeks as I am sure that Addie is not going to enjoy the casting of her good arm! The other therapy we are dealing with is speech/feeding. We have been seeing our feeding therapist once a month, but Addie has just really started trying to communicate so we have decided to add speech and up her therapy to once a week. Addie is up to saying 15-20 words now! One of her favorites is "ready, set, go!" and then watching the boys race. As Michael says once she starts counting them down they don't get to stop because she just keeps going and giggling as they run! The boys are doing really well with her and handle all these therapy sessions like champs! We have started Michael homeschooling and so of course Stephen likes to participate as well. It has gone surprisingly well given everything else we have had going one and I just appreciate having them all home with me still. So life is hard some days and life is long some days but when I sit here and think about it all I am just so grateful! God has been good to me. When it is hard he gives me strength. When I am stressed He gives me peace. As I sit and think of all we have gone through these past 2 years with Addie I am so amazed at how He has carried us. Mike and I know God has lead us to the doctors for her and has given us the strength and resources to travel them. Mike's boss has been an amazing blessing working with Mike so that he has been able to attend a good portion of the doctor appointments with me. It is a lot to deal with but God is good. I just keep remembering 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." This verse gives me hope and strength to carry on. My biggest desire in life is to bring glory to Him and being remind that in the struggles when I can't see how He could get glory from the mess I am making that if I continue to strive for and love Him that he will use the good days, the bad days, the hard days, and the long days to paint a beautiful picture of my life that is good and that brings Him glory. When I keep my focus on Jesus life gets a lot easier to handle!