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!

Life in a cast

Addie has been casted for 4 and 1/2 weeks now. We were having quite a bit of problems keeping her first cast dry which lead to a skin infection which lead to a new cast on Sept. 30th. We are doing much better with this new one! It fits much better and she is feeling pretty good about it. We are changing the diaper every 3-4 hours with multiple diapers in order to keep in tight against her skin so we do not get the cast wet again. It has been working so far although I am excited to get it off so we can stop setting the alarm for the middle of the night to change her diaper; waking a sleeping baby is never fun! She has learned to army crawl with it on so she can get around. The casting process has been great for her left arm! We have doubled up and are doing OT 2x a week during this time. The cast keeps her stuck on her back or her side which eliminates gravity allowing her to move her arm more than she can when sitting which is an awesome opportunity for strengthening. The therapists have been pleased with her movement and we are praying that the doctor will be when we return for her follow-up Nov 3rd. They will make the final decision on another nerve transfer at that point so we are trying to work as much as we can to see if strength building with gravity eliminated will help her be able to use her arm more against gravity when she can sit up and eventually stand. We are open to doing the surgery if it will improve her motion but there is always risks involved in any surgery and so we are hoping to see what she can recover without surgical measures. Yet as always we know that God has a plan and is working in the midst of this to bring about glory. Some days it is easy to wonder why He didn't just heal her because we know that He is capable and has done that in some cases. But then I am reminded that to have faith you must have hope. If everything happened immediately and exactly as we expected there would be no hope and with no hope you have no faith because " faith is confidence in what we hope for and assurance about what we do not see." Hebrews 11:1.  Faith requires hope the more you have to hope for the more you have to trust God and have faith in His plans and His timing. So we are holding onto our hope as He is stretching and growing our faith because the Bible reminds us that God is faithful and deserving of our hope. "Let us hold unswervingly to the hope we profess, for he who promised is faithful" Hebrews 10:23. The cast is scheduled to come off Oct. 21st at that point Addie will be in a brace for an undetermined amount of time. The brace will allow her to take baths and sit up two things she cannot do in her cast so we are looking forward to that! We are also adding speech therapy to her eating therapy and hoping to see some more progress in that regard. She is actively trying to communicate more but her levels of communication are still very behind for her age. It has been a busy few weeks her adjusting to her in a cast and the extra care she requires and we have also started homeschooling the boys. Michael is doing really well and catching on really quick with his school work. Stephen likes to do what Michael is doing but isn't really into school except for science experiments! It has been a crazy fall but I am so excited to see what God is going to bring out of this time in Addie's life because "we know that in all things God works for the good of those who love him" Romans 8:28.

Surgery Update

Well Addie had her hip surgery yesterday. It went extremely well. The doctor was able to loosen the tendons around the ball of the hip and then cut the leg bone underneath the ball in order to move the ball into the socket. They had been worried about her losing blood due to cutting the bone, but the blood loss was minimal! God has his hand on the surgeon and his team and all were pleased with the results and ease of surgery. Her pain yesterday and through last night was bad, but she was in a much better mood this morning. The doctor was in and we are going to be able to go home this afternoon after her third dose of antibiotics. We are looking forward to sleeping in our beds! The body cast is loose around her belly and goes to her ankle on her leg but only to her knee on her left which is nice. The plan is for her to come back in 2 weeks for X-rays and then 6-7 post-op the cast should come off and she will go to a brace for an un determined amount of time. We are so grateful for God's touch on her and the surgeons who he used. And in the middle of this while the night hasn't been easy and this cast will pose its own set of difficulties in the next few weeks we are trusting God that he is using this for the good. We can't see the whole picture but we do know that God loves her even more than we do! Romans 8:28 "We know that God causes everything to work together for the good of those who love God and are called according to His purpose for them." He has been good to us and we are so thankful for His presence in our lives through the good and the bad!

Hip Surgery is in 2 weeks!

I have started and stopped this update so many times. I have been overwhelmed with the results of our Cincinnati trip and thinking about the hip surgery.  When we went to Cincinnati at the beginning of the month he was not pleased with her progress there and if a nerve transfer is necessary they like to do it before 2 years old.  They were (God ordained) able to fit us in for an EMG directly following our appointment and those results showed there was still healing being done on the deltoid! So instead of surgery again we just added e-stem. We go back in November for another follow-up to watch the progress from the first surgery and make sure the deltoid is progressing enough to avoid surgery so please be praying for that. Addie has learned a few new words she will "roar" like a lion, says "uh-oh""wee""yay""cheese" "please." All the words don't come out perfect but there is a lot of progress in that department! We are now on countdown for her hip surgery which is in 2 weeks. We have to be there Sept. 9th for a pre-op appointment and her surgery will be done Sept 10th. It is about a 4 hour surgery. While every surgery has its risks this one is very important for her progress but also carries the most risk and hardest recovery of any surgery we have done so far. They will be cutting part of her bone in order to pull the hip into the hip socket. Because they have to cut the bone there is the possibility of her requiring a blood transfusion which comes with its own risks. Also, to keep the socket in place she will be put in a spica cast, which goes from her belly button to both ankles most likely, for 6-8 weeks. Her movement will be stilted at first until she is able to figure out how to wiggle around in the cast. She loves to be very independent so I am sure it is going to be sad the first few days. Please be praying for us. This surgery is overwhelming to me. We will be at the hospital for 1-2 nights before we are able to come home. Only one parent is allowed to sleep there so the nights will be long. Thankfully all of our parents are coming with us and will be able to help with the boys. I have been reading the Gospels in my devotions and one of the miracles in John 9 really hit me this week. John 9:1-3 " As he went along, he saw a man blind from birth. ² His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?^{" "} Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him." This story in John reminds me that to us things don't always make sense because we can't see the future and how God will use it. The man in John was an adult that finally got healed. He dealt with his blindness his whole life. Could God not have used someone younger who hadn't had to ddeal with blindness for so long for the same purpose? God had a perfect plan and it included that man and his blindness in order for God's glory. The healing came but at a point when the man was most likely desperate and had given up on ever seeing until He heard about Jesus. We cannot give up on our hope of healing because we know Jesus! But in the midst and the waiting and the healing through doctors and surgeries we have hope and patience because 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." It has been a lot just thinking about this surgery and it will be a lot of recovery after her surgery, but through it all God is faithful. I can't see the future but I know that God has a plan and I know that He is using us for His glory in the midst of our struggle. I will try and keep you all updated quickly after her surgery and recovery. I appreciate all your prayers as I said the idea of this surgery is overwhelming me so I am going to need God to carry me through the actual time of surgery and recovery. But he is a God that delights in comforting His people. I am counting on His comfort and peace in the days ahead! 2 Corinthians 1:3-4"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, ⁴ who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God"