5 Months Old!

Addie is 5 months old, 12 pounds 2 ounces, 23.5 inches long! She is just growing although still very small! She is such a wonderful baby especially given all the different issues she is dealing with. I am loving having my girl. She is keeping us busy though. At this point she rolls from her back to her belly on both sides. She loves to play on her activity mat and sit in a chair I bought her that has toys all around. She has discovered her feet and loves to look at them or grab at the straps of her boots with her right hand. She also brings both her hands together on her chest often which is a new trick! The left arm she is now able to lift up onto her chest and bend it at the elbow. We had her first occupational therapy session last week and that went really well. The occupational therapist worked with her arm, went over the stretches I should be doing daily, and gave me some new ideas to try. She will be coming again next week. She comes right into the house and we are able to do it all here! We are in the process of getting the physical therapy approved by insurance and then we should start having that the opposite weeks of the occupational therapy. I am not sure if we will be able to have it in the home when we first start, but hopefully within a couple months it will be. We have quite a few doctor appointments coming up starting on May 30th with her orthopedic doctor here to check on her feet. Hopefully at this appointment we will begin weaning her to only wearing the braces at night. Then June 8th she has an appointment with a neurologist here (for her arm). Her pediatrician referred her to him before we went to St. Louis, but we decided to go ahead and keep the appointment and get his opinion also.  June 20th is her follow-up appointment (for her hip) with the chief of staff orthopedic doctor at Shriners Hospital in St. Louis. After she sees the doctor at Shriners they may schedule her to see a neurologist (for her arm) there also. We are hitting a crazy patch of doctor visits, but we are so thankful for the help we have been getting. Each visit has given more answers and more direction. I am so thankful for all of the wonderful doctors we have worked with so far. Some of these visits carry a lot of unknowns but God has lead us to great doctors who have taken the time to explain and work with us to help Addie. I never would have picked this road to go down, but God is here with me and if He is here I am okay. He is using us here. He is shaping us here. He is faithful! It has been 5 busy and crazy months, but it has been 5 wonderful months! We have seen answer after answer to our prayers! We have a sweet, happy, baby girl that our boys just love! Life is good because God is good! For things that God has done in Addie's life already and what He will yet do I will praise Him!
Psalms 145:3-4 Great is the Lord and most worthy of praise; his greatness no one can fathom.  One generation commends your works to another; they tell of your mighty acts.

St. Louis Doctors Visit

I woke up with such a peace yesterday that could only come from God. I knew as I headed in with Addie that God was right there with us, a wonderful feeling! The day just started off good. Addie and I left my aunt's house at 10:30, I left the boys with my cousin. As I got to the hospital I called  the doctor's office to make sure we were parking in the area they would validate and they told me that they were able to get me a therapy appointment also for that day! When I had talked them on Tuesday they said I would not be able to see all 3 doctors and do therapy until May 28th! God had gone before us! We got to the appointment and we saw Dr. Wall (orthopedic) and Dr. Noetzel (Neurologist) both working with a special clinic specializing in erb's palsy, which Addie had been diagnosed with. Dr. Wall came into see us first. She looked over Addie and we talked about the lack of normal movement in her left arm, right and left fingers, right knee, and clubbed feet. Dr. Wall specializes in orthopedics on upper extremities. She mentioned that because Addie has so many joints that seem stiff a possible definition may be Arthrogryposis, which is more of a name for a symptom than a diagnosis itself. She recommended for us to go the the Shriner's in St. Louis because if it is Arthogryposis it could possibly make a difference on how they handle the hip dislocation. Dr. Wall specializes on upper extremities and works at Shriners were other orthopedic doctors specialize on lower extremities. She was going to call Shriner's to try and get us in and get back to me hopefully today. She gave no definitive prognosis on the arm, but mentioned she thought there could be a plexus injury and not just weakness. She was pleased with the progress Addie's arm had made and added another daily stretch to do. After Dr. Wall left us she went and conversed with Dr. Noetzel. Dr. Noetzel then came in and examined Addie. He took time to explain the idea of Arthogryposis and we discussed the difficulties Addie had during pregnancy; lack of space, lack of movement. After examining her and our conversation he stated that he did not think she was suffering from nerve or muscle injuries. He thinks her arm is just weak from not being able to move it during pregnancy because of breech positioning. He is expecting her to regain full use of her arm. When I asked about doing any testing he also recommended going to Shriner's and working with a neurologist there who would work with the orthopedic doctor there. He mentioned that there could be some genetic issues we may have not tested for that could add to what we are seeing on Addie.We didn't end up seeing the neurosurgeon because Dr. Noetzel did not think it was a nerve injury. We then went to therapy and met with a physical and occupational therapist who gave us some new exercises to do in addition to the range of motions ones we had been doing. I also discussed with the therapists about our plan of action with her therapists back home. They agreed that our plan of 2 times a month with occupational and 2 times a month with physical would be effective. I feel very good about the new exercises because even in the last week, I added 2 new exercises, I have seen a lot of new movement in her arm. God is not done yet and I am excited to see how He continues to touch our little Addie. I am now spending a couple days with my family near St. Louis, which is a nice bonus to the trip! We were able to go to church with them last night and the church family that has been praying for Addie for so long was able to meet her. It has been a great trip and I am so glad we were able to get in so quickly! Our God is faithful and He continues to show Himself as such! Psalms 86:15 "But you, Lord, are a compassionate and gracious God, slow to anger, abounding in love and faithfulness."

Big Day!

Ok well it has been a crazy week! Last Monday we had the occupational therapist come out to do a re-evaluation and decide if we should start regular therapy at this point.  She stated with Addie's diagnosis of Erb's Palsy on her left arm there is the chance she may never gain full use of that arm, and even if she does it may always be weaker. I did not know this! I had been under the impression that Addie's lack of movement was from lack of strength since she had not been able to move it in the womb. After hearing that news from the occupational therapist I started to do some research about it . We found out that 3-6 months of age is a huge time frame for improvement with babies with Erb's Palsy. We also decided that it would be a good idea to see a specialist about it. I had an appointment for her 4 month check-up with her pediatrician Monday the 27th already set so when we got there I asked for a referral to a specialist. He said he could refer me to a neurologist, but he was not sure how quickly they would get me in even with a rush on the order. I started to pray  that if she needed to see a specialist she would be able to get in quickly because she is already 4 1/2 months. The next day, Tuesday, I had an appointment with a physical therapist from Easter Seals for her re-evaluation to decide if we should start ongoing therapy. The therapist mentioned a specialized center in St. Louis, Cincinnati, and Texas just for Erb's Palsy. She shared that the occupational therapists she works with send babies as young as 2 months there to get checked out and that it would probably be a good idea for Addie. Once I got home from that meeting I began looking up these centers. I called the one in St. Louis and was able to get an appointment for today!! What a blessing! So I loaded up the 3 kids and drove down to my aunt's who is about an hour away from St. Louis. My cousin is going to watch the boys today while I take Addie up to the center. Wednesday is their special day for Erb's Palsy and Addie will be seeing a neurologist, neurosurgeon, and an orthopedic doctor! My simple prayer to see a specialist has been answered threefold by three specialists who all work together! It reminds me of this promise in Scripture "Before they call I will answer; while they are still speaking I will hear" Isaiah 65:24. God knew what we needed and He knew when we would need it even though I didn't. His hand has not left Addie! I am grateful we are able to get in so quickly and am praying to get some clarity on her diagnosis and wisdom on her treatment plan. At this point after meeting with the occupational, developmental, and physical therapists all again we are going to start having physical therapy 2 times a month and occupational therapy 2 times a month also. The goal out of these sessions will be to monitor Addie and to give me different exercises to do daily with Addie in order to help strengthen her arms and legs. Yesterday, I was overwhelmed by how quickly everything was going but today I am at peace, excited, and even joyful at how present God's hand has been. I know that I am not going alone today, but that God will walk with me each step of the way so I will praise Him!
                   Psalms 100

Shout for joy to the Lord, all the earth.
2     Worship the Lord with gladness;
    come before him with joyful songs.
3 Know that the Lord is God.
    It is he who made us, and we are his[a];
    we are his people, the sheep of his pasture.

4 Enter his gates with thanksgiving
    and his courts with praise;
    give thanks to him and praise his name.
5 For the Lord is good and his love endures forever;
    his faithfulness continues through all generations.

4 months plus couple days old!

I cannot get over the truth in the song by One Sonic Society "Always". It talks about how God does not delay, He is our refuge and strength. When we were waiting for Addie to get here and when she first arrived it was not the answers that we expected. Still, then and now we can see how God has been answering. He has been a steady refuge for us in the midst of the unknown.  It is only by God that we have peace and strength through all we have been through with her. He keeps helping her and she is doing wonderfully. Addie is the easiest baby I have had! She sleeps through the night, she now has nursing down pat and is putting on weight! She can roll over from her back to her tummy. She is able to lift her left arm more and more! She also handles her braces great! They don't seem to bother her although she does tend to wiggle her left foot loose or out of her brace because she bends her left knee and not her right. The occupational therapist will be back out on Monday the 21st to reevaluate her arm and also her right knee. Than her 4 month appointment on the 28th with the pediatrician. Then she sees the orthopedic doctor again at the end of May to see how her feet are doing and if we are then able to move from wearing the braces all the time to just at night. It is a continual healing process but she is healing! God is answering while it may seem slow at times to us God knows what He is doing! He is always here and always helping! "God is our refuge and strength, an ever-present help in trouble." Psalm 46:1

Living Life

Well life here has been busy. Last week we had Addie's first checkup with her braces on. She is doing great! The doctor was pleased with her progression and the fact that she doesn't seem to mind the braces. Now we don't go back until May 30th! It is a nice break to not be going in every week like we were with the casts. She also had her 2 month check up (although she was 3 months). She weighed in at 10lb 9 oz. So I am guessing she is closer to 11 or so now. She is gaining weight well though so the doctor was pleased with that. The occupational therapist also got back to me and she is planning to come out to the house around the end of April to reevaluate her. Her arm is making progress still as we do the exercises daily. She is also doing much better on her tummy time so that should also start helping with her arm strength. A new issue we have found since her casts are off is that she does not bend her right knee. It bends but she does not bend it. I will be bringing this up with the occupational therapist comes back out. For now I am just bending it on my own when I do her foot and arm exercises already. Hopefully that will help. We have been blessed by how faithfully God is and has been carrying us through. He is just so faithful. We continue to see improvements and we continue to see God's hand. We went back to Indiana this past weekend which was the first time we had been there in over 6 months. As we were there we had a chance to share more about Addie and everyone got to meet her for the first time. We shared to update everyone, but we were blessed by remembering and realizing how God had been preparing to handle Addie even years before. As we looked back we saw ways that God had lead us that at the time didn't make sense or go along with our plans but now we see what a blessing it is. One example was moving to Illinois. We never desired to live in Illinois our goal was always to move south if we moved from Indiana, but we really felt like God had opened the door for Mike's job here. So we came and now we are only 20 minutes away from a new nice Children's hospital. It is connected to the hospital where Addie was delivered and where she was taken right away for the NICU and then again where she had her surgery. It will also be where she has her next surgery on her hip. God knew the doctors and nurses and proximity of this hospital would ending up being such a blessing that at the time we never knew we would need. God really does work all things for the good of those who love Him (Romans 8:28), even though we may not always know how each situation we face could end good.  We intentionally choose to trust God to fulfill His promises, which becomes easier as we reflect on His past works in our lives and continuous peace He has provided.  As long as we remain open, He consistently grows our faith. "The Lord is good to all; he has compassion on all he has made All your works praise you, Lord; your faithful people extol you." Psalms 145:9-10 We have and are seeing His goodness to us day in and day out despite the trials and tribulations and so we have and we will continue to praise Him name!

3 Months old!

Addie is 3 months old! She is doing really well. She has been in the braces for 2 weeks already, and is handling them very well. It is such a nice change to be able to have her in pants and to take baths. She really loves the baths! We have had quite a bit of improvement with getting the braces on and off! I have figured out a pretty easy way to do it now and can more often than not get it on correctly the first try. Her arm is still progressing although slowly. We do the stretches on her feet and arm 4 times a day. She can now move her arm up onto her stomach and bend at the elbow. We have been working on tummy time because for the first 2 months when she was casted we didn't do it. She has gotten to where she doesn't mind it too much. Tummy time is important for her neck and head strength, but it will also help as she start to put weight on her arms to build up strength there. She has not rolled over yet, but she sure is trying! I am sure it won't be too long now, but between the braces and the lack of strength and movement in her arm she is likely to be a bit slower than a typical baby in some areas. No big deal though she will catch up! Plus, as she gets the strength in her arms up she will catch up quickly I am sure. We have a 2 month check on Monday with her normal doctor (I had to push it back because she couldn't get the 2 moth shots with her casts on). Then on the 26th we go back to the orthopedic doctor to check on her feet. Also, I thought the occupational therapist had said that at 3 months she would check her again and try and start some therapy, but now they are saying they meant 3 months after the visit not when Addie was 3 months old. I am going to look into that some more because I don't want to rush I also do not want her to fall behind because I am not on top if it. In other news I have made my first few adventures out of the house with all 3 children by myself and we all survived! And we had one beautiful day the beginning of this week and Addie got to go on her first walk. She really enjoyed sitting up in the stroller looking around! Life is fun. She sleeps good, eats good, and is smiling whenever you talk to her! Amidst all the things she has dealt with in these 3 short months she is a huge joy and blessing! Plus, pink is just fun after all my blue :) We are praising for all the positives and continuing to pray for the areas that still need work! God is faithful and He is working!

Braces, Braces, Braces...

Wednesday was an exciting day here. Addie got her casts off and is now in braces! The doctor was pleased with how the extra week of casting helped her left foot. She wears the braces the majority of the day. They are only off to stretch the foot up and down, 4 times a day, and take a bath. The change from casts to braces is exciting in a lot of ways. Addie can now wear pants and take baths, which she loves! They do come with some difficulties the casts did not have. Her feet are so small and so are the braces! They have to get on just right in order to keep her heel down and the achilles' tendon stretched and the arch straight. It can be very stressful for me. I am having to do and re-do it before it is right each time I take them off. The braces look like little ski shoes that strap 3 times that hold her foot flat and straight. They are connected with a bar in between the 2 shoes. The best part is that they are pink! We go back in one month to recheck how she is handling them. The plan at this point is 3 months all day with the braces on and then start to wean to where she will just wear them at night. Every step is progress and I am thankful for it, even the difficult parts. God is holding us up through it and carrying us through.  Psalms 73:26 "My flesh and my heart may fail  but God is the strength of my heart and my portion forever." The specific prayer requests right now would be that there is no regression on her arch or achilles' tendon from switching to braces, and that I am able to get the shoes on correctly each time to keep her feet in their correct positions. Thank you all for your prayers we are truly blessed! God is working and answering!