14 Months

It has been a big month for Miss Addie! She has been increasing her time in her stander to more like 30 mins at least twice a day. The strength she is gaining is amazing! She also got her new orthotics and shoes. She wears them pretty much whenever she is awake, when she is sleeping she wears the braces she has been wearing since last year. The new orthotics help keep her feet in the correct position which is helpful when she stands. I have to help her get her feet under her but then she is able to pull herself up at a toy and stand there for a 15-30 seconds and play. She is loving the new feelings from standing up. She will fall back on my leg and then do it again. It is exciting at all the progress she has made from just one month using the stander! Her arm is also continuing to strengthen and improve! And she is now able to begin to chew! So we are slowly working on adding some more textured foods to her diet, which she loves! The most exciting thing is she is now able to say Ma-Ma since she has some up-down motion with her jaw!!! We have seen a lot of improvements this month and are anticipating to see many more as we continue to pray and ask God for his healing hand to be upon her. We have a few big appointments coming up this month. We go Feb 26th for the hearing test that was recommended at her 1 year group therapy meeting. We then go back to Cincinnati on March 3rd for her surgery follow-up. Her weight is around 18lbs so we still have 2 pounds to go before we are able to schedule the hip surgery. But again we are continuing to pray and trust that God's hand would touch her and that things would happen in His timing. We have been blessed because each step of the way God has been with us, carrying us through and we anticipate and expect that to continue as He promises to be "God is our refuge and strength, an ever-present help in trouble." Psalms 46:1. I will try and update again after her hearing test on the 26th as always prayers for continued healing are appreciated. He has heard them and He has answered!

13 Months

Time just keeps going. I heard a phrase this past week that sums it up so well ' the days are long but the years are short.' I can't believe how quickly time is flying. It gets hectic and chaotic here keeping up with not only all of Addie's appointments but also with the little boys running around. It is a wonderful chaos though and I am so thankful I get to be home for all of it! Addie is handling everything we go through extremely well. We are now putting her in the stander once a day for 15 minutes to encourage weight bearing and standing. We will probably be bumping that up to twice a day in the next week. We also are still doing her E-stem on her arm 2 times a day for 15 minutes each time. She just sits there and plays with it. Her arm is doing very well in what movements she is capable of while lying down. We are working on increasing her strength in the left arm so she is able to move it when on her side and then when sitting/standing. She is also making good progress with her grasp and wrist placement. Her eating is still at the same spot where is she able to eat purees or mashed up food, but she still does not chew on her own. She has started to feed herself when I put out little snacks that will melt in her mouth. She is also now drinking from a normal cup instead of a sippy cup so that she is stretching her mouth out more during the day. She is also starting to use more sounds and use them more often in an attempt to communicate.We are continuing to see steady progress in many areas but it is also more evident to see where she is behind as she gets bigger. One of her favorite games is for Mike or I to hold her and chase Michael and Stephen as they run around the house. She just giggles and giggles! I can get sad at times when I think about where she would be if we weren't dealing with all this physical issues. I have to remember how far she has come. A year ago we were in casts for her legs and no left arm movement with no idea what she would be able to regain there! God has worked many miracles in her life and we are anticipating even more. It is hard sometimes and the days and weeks are long as we go from therapy to therapy with so much to do at home in between, but time is going quickly. As I sit back to reflect I can see how much God has been with us although in the moment it is easy to lose my focus and only think of what we still have to overcome. It reminds of the song I put at the beginning of the blog"I Will Look Up" by Elevation Worship. There is a verse that says "I look back and see that you are faithful I look ahead knowing you are able." I am sitting here encouraging myself again as I reflect on this past month for you. He has been faithful and so I know that He will continue to be faithful. I am not perfect somedays life weighs heavy on me as it does for all of you, but with God I have one who is eagerly waiting to carry the burden for me if I would just let go! I am going to spend some time giving up my burden yet again because He promises to take it and give me rest in its place. I hope that with whatever you are facing you will also turn to Him and allow Him to minister to your heart as only He can. It doesn't mean any of your present circumstances will change, but your heart will and that is what matters! So I will finish with this promise from Jesus himself in Matthew 11:28-30 “Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”

A lot to take in!

We have had a busy week!  We had a meeting with all 5 of her therapists to go over the 1 year evaluations, create new goals, and create strategies in order to meet those goals. The meeting was really hard to sit in and listen to for me. I realize that we need to focus on how far Addie has come and not just where is she is at but wow it just felt like I was sitting there and everyone was telling me everything that is wrong with her. We left with some positive goals though and some great plans to meet them. We are all very pleased with what she has accomplished so far and I know that it is only because of God. Then Friday Addie and I traveled to St. Louis and back to see her hip doctor there. At the appointment we discussed that Addie needs to be 20 pounds before they will even schedule surgery, so at this point she has a little over 3 pounds to gain. Her hip is going to require an intensive surgery where they will move it into place by fixing the ligaments and cutting her bone. Unfortunately at this time they won't be able to correct her socket so most likely she will require a second surgery in about 5 years later when the socket is mature enough to be corrected. Overall it was a good appointment and we were able to work on some of the plans the physical therapist has for her. We are in the process of getting Addie some braces to wear during the day when she is standing up in order to keep her feet in the correct position while allowing her to begin to bear weight. We are also getting her a stander that will hold her up and allow her to weight bear on her hips, legs, and feet. The stander will help her increase her muscles in her legs that she has not had a chance to work on. It will also help strengthen and stretch her back appropriately in ways that she is not getting from always being on the floor. We are really looking forward to the positive outcomes from the braces and standers. BUT, her feet have gotten tight again and so she would not be able to wear the braces in the correct position without hurting her feet. I was able to go see her orthopedic doctor here today, who has been treating her feet from birth, and he has casted little Addie again. We go back on January 2nd to have them taken off and are hopefully that she will not need anymore casting in order to wear the braces. The timing for the casting could not have been more perfect because she will not have to miss any therapy sessions while she is casted because Easter Seals, where she receives most of her therapy, is closed from Christmas Eve until January 2nd. God is so good. All of these things can be so overwhelming and realizing that a lot of what we are facing will be things that we are watching for years to come really hit me hard, but I know that God is faithful. I was listening to a sermon the other day and was reminded that hard times don't erase God's promises. We may not see all the answers now but His promises are as true today as they were yesterday and as they will be tomorrow. Thinking of Christmas we celebrate the first coming of Jesus that people waited years and years for, and even though it didn't happen when they thought it would it happened and it happened exactly like He said it would. The same is true of His second coming and of all the promises He has made to His children in the Bible. I may be tempted to lose my peace and focus on all the struggles and things that Addie has ahead of her and that we as a family will face but I know that my God has not forsaken me "For he has not despised or disdained the suffering of the afflicted one, he has not hidden his face from him but has listened to his cry for help." Psalms 22:24. I opened my Bible up to that Psalms today and I had a note written there saying 'God will use all my sorrow for His good if I let him guide me through it to where He wants me to be.' He has proven that true to me in the past and I know that He will do it again so while we face the many trials in the days and years ahead with Addie. We will praise because of who He is, because of what He has done, and because of what He has promised to do! "We are confident of this that He who began a good work in us will carry it on to completion until the day of Christ Jesus!" Philippians 1:6 He already came once and He is coming again and I want to be found praising Him because He is worthy of our praise!

Praise Alert!!

God has answered again! We are beginning to see external rotation in Addie's left arm! This was the hoped for outcome from her surgery in October! They were not expecting to see the results already! Here is a video of her doing it and then clapping for herself! She loves pool therapy and I am so grateful we are able to do it so often as it seems to really be helping her arm function. Once again God has been faithful. We are continuing to count on that faithfulness as we head to her St. Louis appointment tomorrow to talk about her hip. Thank you all for your continued prayers for her healing and strength as we go through this one step at a time. He has been carrying us all along and we have not been consumed by these trials the past year! Lamentations 3:22-24 "Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, “The Lord is my portion; therefore I will wait for him.”

Addie is 1!!!

Today is Addie's 1st birthday. I can not even believe that time has gone so quickly! We have had a year I could not have imagined. God has been so faithful and steady. When I think of all Addie has faced this year I am reminded of all the way we have seen God's hand. Before she was born we were warned about her heart but God touched that. We were also warned that there was most likely a genetic defect, an underlying cause of all her physical issues. When she was born there was no genetic defect! Upon birth her left arm could not move now she is able to lift it over her head when lying down and is beginning to get external rotation! Her middle fingers on her right hand tended to stay pointed into her fist upon birth, now they move freely. Her feet were severely clubbed but now with casting, surgery, and her braces they are looking much better! There was concern she was aspirating but after a swallow test we were able to cross that off the list. God has worked in so many ways in her life and it has been so exciting to watch, but He has also worked in our lives. I am amazed as I go back over all we have dealt with this year and am able to realize how much God has carried us through and been so true to His word. His faithfulness through this past year helps me to hold onto Him in the coming year. I receive a daily devotional and the title of today's was "He still heals." Addie still has many issues to deal with including her dislocated hip, which we follow up with next week in St. Louis, but God still heals. He has made promises and He will be faithful to those because He is faithful! I shared these two verses with Mike shortly after the ultrasound showing us some of the difficulties Addie would be facing. Psalms 89:1-2 " I will sing of the Lord’s great love forever; with my mouth I will make your faithfulness known through all generations. I will declare that your love stands firm forever, that you have established your faithfulness in heaven itself." God's faithfulness comes from who He is, it does not change!

God is so Good!! 11 Months

 We have had a fun month with Addie! She is continuing to make more sounds and using them to express her desires. Although at this point there is a lot of Da-da and no Ma-ma sounds (I am working on that!) We also celebrated her 1st birthday a little early but it was a great day! She loved playing in her cake although she did not really eat it. She made such a big mess she needed a shower afterward which just meant she got to try one of her new outfits on right away! She is starting to fill out in the past few weeks and loves to try new foods. She loves things that have a lot of flavor. One of the latest things we tried was juice from my grapefruit thinking she would make a silly face but she loved it and wanted more! We are continuing to work on her arm and for the next 3 months we have increased her to 2 sessions of Occupational therapy and 1 session of physical therapy a week. They like to increase the OT for 3 months following surgery. We had OT today and I realized again how much God is working even in the little things. Angie her therapist was teaching me how to tape Addie's wrist and also we were working on using E-stem. The taping helps pull her wrist into the correct position which increases her ability to grasp. We have tried the taping a few times and have been very pleased with the results. Now that I know how to apply it we will be able to keep Addie's wrist taped consistently. The E-stem is for the muscle up by her shoulder where she had surgery. The E-stem is a machine that hooks up to 2 electrodes and sends electric currents to her muscle to help it contract. When we started today Angie warned me that Addie may only be able to have the current level to where she could feel it but not enough to actually make her muscle contract. She also warned that while our goal is 30 minutes a day Addie would probably only make it 5 or 10 minutes for the first few days. Well, once again I saw how God answered my prayer for her to have the personality to be able to handle the trials she would be faced with! Addie was able to handle the E-stem for 15 minutes and we were able to set the current high enough to make her muscle contract without it bothering her! Angie was amazed at how well she handled it. It is always neat to see God answer your direct prayers the way you desire, but today I also experienced Him working in a way that I never thought to pray. When we started talking about taping Addie's wrist and then E-stem I was excited about trying anything that may help or just speed up her healing. I had no idea that I would be required to do it! I didn't even think to pray that I would catch on quickly or be able to understand what my role was, but today as Angie was walking me through it all everything went smoothly. All of the understanding seemed to come very easily to me and I know that as I prayed for Addie to have the right personality and spirit to go through what she needed God is also doing that for me. Angie was able to leave the E-stem machine with me today. She had anticipated it taking a few more weeks of practice. Addie handled it so well and God gave me such an easy understanding of it we are able to start doing daily E-stem now instead of waiting! I love it when the Bible becomes alive in my life!  Matthew 6:8b "for your Father knows what you need before you ask him."  I never even thought to pray that I would understand my part but God knew! He opened up my mind to be able to understand and comprehend what I needed to at the time that I needed to! I never want to be so busy looking for the big ways of God's presence in my life that I miss the day-to-day ways He is already there and working! He has been so good to us and I just can't help but thank Him. His love is so precious and so caring! Psalms 63:3 "Because your love is better than life, my lips will glorify you." We have been blessed by seeing God's hand at work in miraculous ways, in medical/science ways (doctors), and most precious to me in His sustaining ways in our lives. He has carried us through all of this with such a precious peace. My older brother shared this verse with us right after we found out some of the issues Addie was going to have Matthew 11:28-30 "Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”  Jesus has been this to us the past 11 months in a way I had never experienced before. With Addie we have faced issues I had never heard of or thought about before her, but with Him carrying us we have been able to go through them. We get tired, we get busy, we get worn out but it has been easy! We have had joy because it has been Him. Our souls have had peace, a steady peace, throughout each up and each down with her. That peace, which passes understanding, can only come from God. I can hardly explain how amazing it has been to live these Bible promises! I know what we should have been feeling and then I know what we actually felt and it does not match up. I know it is not me it is all Him! We are awaiting the miraculous while living in the normal and that makes us see so much more of what God is doing because we are looking for Him! God's goodness and glory is all around the more I look for it the more I see! He is the King of Glory and Creator of all! 

                                                                      Psalms 24

¹ The earth is the Lord’s, and everything in it,
    the world, and all who live in it;
² for he founded it on the seas
    and established it on the waters.

³ Who may ascend the mountain of the Lord?
    Who may stand in his holy place?
⁴ The one who has clean hands and a pure heart,
    who does not trust in an idol
    or swear by a false god.

⁵ They will receive blessing from the Lord
    and vindication from God their Savior.
⁶ Such is the generation of those who seek him,
    who seek your face, God of Jacob.

⁷ Lift up your heads, you gates;
    be lifted up, you ancient doors,
    that the King of glory may come in.
⁸ Who is this King of glory?
    The Lord strong and mighty,
    the Lord mighty in battle.
⁹ Lift up your heads, you gates;
    lift them up, you ancient doors,
    that the King of glory may come in.
¹⁰ Who is he, this King of glory?
    The Lord Almighty—
    he is the King of glory.

What a Month!

Addie is 10 months old now well 10 and 1/2 months. She has had a huge month! She had her surgery and 2 week follow-up appointment and everything is going great! She was cleared for all activities again starting last Friday. Today was her first therapy session after surgery. The therapist was very pleased with how her arm was doing and the scar today. We discussed the second EMG that we had done right before her surgery. The therapist said when she received a copy she thought it was a miracle in how much recovery and healing had happened in her arm. Even though there was surgery there was healing! God is good. Addie has also started to get much noisier. She blows bubbles with her mouth and has started to make syllable sounds like "baba." That was huge for her! She also has now learned to drink out of a sippy cup with a straw which was something her feeding therapist wanted us to try. Another big deal has been her eating. She was not really wanting to eat much baby food and so her feeding therapist recommended trying so other foods. It turns out Addie just wants foods with flavor! She is her daddy's girl! She can't eat the plain stuff. She enjoys chili,
baked potato soup, taco soup, and other flavorful things! She only has her two bottom teeth so she can only eat soft things or I will puree some of the soups so that it is easier for her to swallow and that seems to work. We are just so excited about each step that she has made and so thankful for what God has done already! It is such a blessing to be able to see His hand at work so consistently and to get small reminders of what He has done and promised to do. God has been so gracious to us in the way He is working. Lately He has been reminding He is not done yet with her Psalms 27:13 "I remain confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord." Three verses I read yesterday said wait and wait with joy.  "Be earnest and unwearied and steadfast in your prayer [life], being both alert and intent in your praying with thanksgiving" Colossians 4:2.