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"

19 Months

Addie is 19 months old! We are really starting to see her personality more and more. She is very happy and easy going unless you try to take her toy. :) One of the words she has down pat is HEY as she pulls her toy away from her brothers when they try to trade with her! She is wanting more and more to be independent. She is trying to feed herself with her spoon. We are looking into getting a specialized bowl and spoon that will allow her to scoop easier. The feeding/speech therapist was here last week and she was very pleased with Addie's progress already from the tubes. She thinks we will see more improvement on her vocally in the next few months. The sad part is she does not think we will see much improvement on her eating until after her hip surgery and she is up walking. The saying is hips goes with lips. So we are at a maintenance stage with her feeding. We are continuing to work on her chewing and teaching her to do it the correct way. So her diet consists of mostly purees, yogurts, cottage cheese, and a few other things like puffs, bananas to practice her chewing. Her physical therapy is also in some ways at a maintenance level where we are trying to keep the skills we have and continue to strengthen the muscles as we weight for her hip surgery. Addie can still army crawl but she has figured out how to scoot while sitting up so that is her preferred way to move now. Occupational therapy is also going well and while she has full motion while on the floor we are trying to build her strength so that she has more motion while sitting up. Overall we are happy with each step, but so ready for her hip surgery so that we can move on. I keep telling Mike that once she is out of her cast and brace she is going to age 6 months in 1 week as she learns to walk, talk, and eat! It is so exciting to think about because you can see she is so ready to be keeping up with her brothers and I can't wait to see her chasing them! God is really blessing us and we are trusting in His timing for her surgery. As of now she is scheduled for a follow-up in Cincinnati for her arm on Aug. 4th and her hip surgery in St. Louis September 10th. We are on the waiting list for her hip though so that could change in a moment's notice. September would be nice because it would be cooler for her while she is in a body cast; like I said earlier most of her progress is at a standstill until her hip is in place.  We are just praying for God's timing in all of this. He has worked out things in her past in ways I didn't know we need when I was in a rush for previous surgeries so I am continuing to trust Him for the timing of this one. I have been reading Psalms 33 and verse 4 keeps jumping out at me as I think about her surgery "For the word of the Lord holds true, and we can trust everything he does." I can't see everything in Addie's future, my future, or the future of my family but God can. I rest in the fact that He sees all and knows all and that whenever the surgery happens He will be with us and His word and His promises that we have been holding onto all this time are true. The timing and the circumstances that I face do not have the power to change to truth of God's word. That is why I can trust Him. So yes I would like her to surgery to have been yesterday I trust that in all of it God is working for the good. Romans 8:28 "And 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 is working all the pieces of this puzzle that I see and those that I don't see for good so I can trust Him! I am so grateful for that truth. The days here aren't always easy trying to do all of Addie's therapy and take care of the boys so they are able to play and enjoy life but God is always faithful. He is using me here and He is giving me a grace and peace through each trial and different step. I am so thankful for Him!