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!

Tube surgery

Addie had her tube surgery today at 8:00. The doctor was able to get the tubes in without a problem. He said there was a lot of thick fluid back there and that this should make a big difference in her hearing. She was a little fussy as she woke up but was doing better as we settled down at home. She is sleeping now and will most likely sleep on and off today. She is taking Tylenol for pain but the doctor said by tomorrow she should be fine. She is also using ear drops for the next week to help the fluid all drain out and to avoid infection. Thank you for praying for her. She is doing well and we are excited to see how this better hearing will impact her ability to communicate! Once again God has shown himself faithful to us.

Surgery dates & 18 month update

Addie is 18 months. She is 29 inches and 19.5 pounds. We have two upcoming surgeries. The first is this Monday June 29th for the tubes in her ears. This is a quick outpatient one but she will be put under to keep her still. The tubes will fall out on their own in about 9-12 months. When they fall out we will treat her ear like a brand new ear and hopefully it will not fill up with fluid again! The second surgery is for her hip. That one is in St. Louis and will require a one or two night hospital stay. She will be under for about 4 hours while they cut the bone in order to move it into place. She will then have metal plate put where they cut it to hold it steady while the bone heals. The metal plate will be taken out in 4-5 years. The hip surgery has been scheduled for September 10th although we are the first ones on the waiting list so if there is an earlier cancellation we will move up. After the hip surgery she will be in a cast from her belly button down to her ankles for 6-8 weeks. After she is removed from the cast she will most likely have a brace but I am not certain on the length of time or how often she will have to wear that. We decided to take a vacation before her surgeries and she is just loving the pool and the beach. She loves to meet new people and try out her new word "hi." She is also starting to say "ma-ma" and "da-da" like sounds when she wants Mike or I. She is making progress and she so wants to be big! It is hard now because her mind is able to think like a typical 18 month old but her body can't keep up. While I am not excited to go through these upcoming surgeries I am excited to see her progress after them. God has been good to us and has blessed her with a determined personality but also an extremely happy and easily content personality. Life with Addie is fun! And we are so thankful for all God has done and all that He will do in her and through her. We have seen miracles in her life and the lives of those around us and we are continuing to pray for the miraculous as we prepare for the surgeries. We continue to wait and to hope on God because as psalm  71:5 says "God has been our hope and confidence since our youth" and we aren't giving up on Him now! Our prayer is that our boys and girl are learning the same thing as we continue to rely on Him each step of the way.

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."