17 Months!

Our baby is getting big! She is getting more vocal and demonstrative about what she wants. She can say "hi" and is actively trying to learn new words. She can sign "more" "please" "eat" and "sleep." Every new step is exciting. She is also almost 20 pounds which is huge!!! We should hopefully be able to do the hip surgery sometime this summer. We will be going down to St. Louis on June 5 to see the doctor again and also to get cleared by the anesthesiologist. I am hoping we will schedule her surgery at this appointment. We did have her follow-up for her ears last week and there was still fluid. The doctor has decided it would be the safest route to go ahead and do tubes since we know the fluid has been there few month and is not allowing her eardrums to move properly. We will do that surgery June 29th. It is a quick surgery done in an outpatient clinic. The hope is that she will be able to hear more clearly so that she will have an easier time talking. All of her therapist have been pleased with her progress all the way around. For her arm when she is laying on her back she has full motion. When  she is on her side she has almost full motion. We are working on exercises in this positions to keep it loose and also to build strength. We are also working on some exercises in sitting to build strength. As her strength builds she should be able to do more in sitting and standing position with her arm. She is still having occupation therapy once a week to work on it and we do E-stem 30 minutes a day to continue stimulating her nerves from the surgery. She continues to speed up her army crawl in order to try and keep up with her brothers! Her feet are also doing very well. She sleeps in her orthotic braces and during the day wears AFO braces to keep the stretched and flat at the bottom. The braces she wears in her shoes when she is standing especially to help her ankles not roll. She can get her self up into the crawling position of all fours now but her left arm is too weak to hold it for long. The therapists are amazed that she is even capable of doing that between her arm and her hip being out of socket. Addie sees the physical therapist once a week also and spends about an hour a day in her stander strengthening her legs. The stander is also hopefully helping her left hip socket that was shallow to become deeper by bearing weight. She just got a new stander that is much easier to use, and was completely paid for by the Early Intervention program we are in. The Early Intervention program has been a huge blessing for us because it covers the therapy sessions as necessary so we are not worried about using too many as we would be with insurance because our insurance only grants us so many a year. Addie is also seeing a feeding therapist once a month. At this point we are working on placing soft chewable foods on the sides of her mouth and cuing her to chew. Her chewing has improved, but the majority of her calories continue to come from purees and things like oatmeal. We still have an interesting road ahead of us but God has been good! We are enjoying the weather and she loves blowing bubbles, going to the zoo, swinging, riding in the bike trailer with Stephen, and going for walks outside. She always wants to be involved in whatever her brothers are doing and Michael can make her smile all the time. Michael is a great big brother! He is always willing to help spoon feed Addie or stop her from crying. Stephen is also getting into the big brother role and trying to get Addie to help him do his chores! I can see Addie and Stephen causing some trouble in the next few years but I love watching their bond. It is hard sometimes to have our time divided so much between doctor appointments and therapy sessions. But then I see how compassionate already it is making my boys and I am grateful for that! We continue to lift Addie up for complete healing as we know the God that we serve is able! We just want God to get glory through all that we are going through in our life. He has been so steady and faithful to us in the midst of Addie and all the other things we have faced as a family this past year and a half.  He has been a God of encouragement (often through other people) and endurance and we are so thankful for that! Thank you all for your prayers and texts and notes as we go through each step. They are so appreciated! "May the God who gives endurance and encouragement give you the same attitude of mind toward each other that Christ Jesus had, so that with one mind and one voice you may glorify the God and Father of our Lord Jesus Christ." Romans 15:5-6

16 Month Update

Sorry for the long delay! We have been enjoying the spring weather.! Addie just loves being outside! She loves the swings and slides at the parks and feeling the wind on her face. We have been going to the zoo often and she loves it! She is still a happy baby, very given to smiles. She has now started to make her preferences known. If one of the boys steals her toys she will let them know she wants it back! It is wonderful to see her understanding and interacting more. She now has a pretty quick army crawl and mixed with her rolling she gets herself wherever she wants to go! We have, since my last update, visited Cincinnati to do a follow up on her arm. It has been 6 months since her surgery and they are pleased with the progress she has made so far. They said we should continue to see progress from the surgery for the next year, but it is obvious that the surgery was successful! We are going to St. Louis to follow-up on the plan for her hip June 5th. She was only 17lbs and 11 oz last month and they want her to be closer to 20lbs for the hip. We are using this time to pray that her hip will go into place on its own! She has gotten much stronger through the use of her stander that holds her upright for 1 hour each day at least. She also hooks up the e-stem machine at the same time for her arm. She  plays with toys in front of her or watches cartoons with her brothers while she does it. She has a set of braces now for her feet that she wears during the day and and separate one for at night. The ones at night continue to have the bar in between to hold her feet out, the day ones come up her calf and hold her feet flat to help her stand without rolling her ankles. Since our hearing test in February the pediatrician referred us to see a Ear, Nose and Throat specialist to discuss the fluid in her ears. We saw him last week. He saw that there was still fluid in her ears and asked us to come back next month to recheck. If the fluid is still present he wants to put tubes in her ears to release the pressure before any lasting damage is done. At this point we are just thankful that there was no hearing loss already and praying that the fluid will leave on its own before May 13th. Addie is also doing very well in her feeding therapy. She has learned to sign a few words like "more" & "eat". We are working on "sleep" "play & "drink." Michael loves to try and teach her ones and even starts making up his own signs to talk to her! She should be able to talk as she continue to open her jaw more and more for food and also just to babble. It is always exciting to see her learn and do new things. I sometimes get saddened by what she can't do especially when we are around babies her age or younger that are doing things that she can't do yet. But then I watch her play and see her lift her arm over her head on the floor, or see her get herself into a sitting position from the floor, or watch her army crawl from one side of the house to the other and I am reminding of all God has done for her already. Yes her life has had its struggle and yes I am exhausted sometimes by the constant effort needing to keep up with the therapy and doctor appointments not to mention the 2 other little ones running around here! Most weeks I feel we have a good balance but there are weeks that it is just hard! And it is okay that it is hard. God hasn't left and He hasn't finished but we are in the waiting. God doesn't promise us that it will be easy He just promises that it will be worth it and He won't leave us. We are called to persevere through our trials and stand firm on Him! We have to fight the good fight of faith and faith is hard because its very essence is of that which cannot be seen. Hebrews 11:1 "Now faith is confidence in what we hope for and assurance about what we do not see." Our eyes deceive us so quickly and so easily from what God is trying to speak to our hearts. He is coming again!

 Hebrews 10 36-39 "You need to persevere so that when you have done the will of God, you will receive what he has promised. ³⁷ For “In just a little while, he who is coming will come and will not delay.”³⁸ And, “But my righteous one will live by faith. And I take no pleasure in the one who shrinks back.” ³⁹ But we do not belong to those who shrink back and are destroyed, but to those who have faith and are saved. I am fighting daily to be one who does not shrink back because of the circumstances we may face here, but to relay  totally and completely upon the truth of God's word because Luke 1:37 " For no word from God will ever fail.” I am always amazed at how much writing these posts help me. It is a fight to persevere and hold on and sometimes I forget just how big God is, but when I sit down to compile my thoughts for you He always leads me right back to the Scriptures I need to remind me so that I can share with you. He is so good!

Hearing Test

I took Addie in for her hearing test last week. She did wonderfully during the test and she does not have hearing loss! What another blessing! God has touched her and touched her. We were not able to travel to Cincinnati today for her follow-up appointment because all of the kids are sick this week. It has been a crazy winter of sickness for us, but that is okay. We are just going to relax and enjoy the days at home recouping. They will get over this soon to just like everything else. Thankfully it is not strep throat because we had a scare of rheumatic fever with Michael following his last case of strep. God touched him also. We are so thankful for all the ways God has been working in our family and we are continuing to see the truth that James talks about. James 1:2-4 ^"Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything." We have gone through some trials lately, but so has everyone. The difference is that God carries us through as when we try to follow in His steps. Job 23:10-11 "But he knows the way that I take; when he has tested me, I will come forth as gold. My feet have closely followed his steps; I have kept to his way without turning aside." We are continuing to pray for the miraculous because we serve a miracle working God as we have seen again and again. I have been reminded again of the truth of Jeremiah 32:27 "I am the Lord, the God of all mankind. Is anything too hard for me?" God is bigger than we can imagine and He desires to work in our lives. When trials come our faith in the greatness of God must not change; that is where our perseverance and maturity come from. And "faith is confidence in what we hope for and assurance about what we do not see." Hebrews 11:1. Learning to live believing in God who is our hope is what perseverance is all about. Learning to hold onto that faith regardless of the circumstances and what the world says. Learning to trust that the Bible is all true and always true. Learning to not just know but to live out the fact that God is who His word says He is regardless of what is going on around us. This life of faith is not easy, and it is easy to lose your focus, but that is why we must keep our focus on Jesus who is desiring to continue to grow our faith which is why He allows the trials to come. I will leave you with this encouragement about faith from Hebrews 12:1-3 " Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart."

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.”