He is a little guy!

I can not tell you how many times I hear that in a week regarding Nevin, my middle man. This past year I have even gotten a couple comments from people who think he is 18 months or a much younger 2 than he actually is. In the last couple weeks when people have asked me how old he is I have been testing the waters by saying, "Almost 3." Most people look shocked, say how small he is or just shut up. If you know us well and see Nevin I am sure you have had thoughts of his stature of made comments yourself. After a year of searching for answer to our little puzzle we have finally found the missing piece.

We started with a new pediatrician a little over a year ago. It was right when Nevin turned 18 months. He had grown fairly normally as a baby, developed on track (except he did not walk unassisted until 17 months or so) but he really only said mom. When we meet with our new Doc Nevin's speech was our first concern and also it seemed his feet rolled in. There was not much concern from our doc at first and we just sort of rolled with it. Figured everything would catch up, he was just a "late bloomer". When his second birth date rolled around though and he had not learned any new words we were concerned. Before new steps could be taken though Gavyn was born and we were whisked away to the hospital for 21 days, two weeks at home, 3 more days in the hospital, countless ER visits and doc visits. Life got crazy and we were not sure where to turn for Nevin. Thankfully our doc got a Speech Therapists appointment set up at Cardinal Glennon for him and after our initial visit she recommended we get him in First Steps with Gavyn. That was one of the best moves we have made for our family. The therapy that both boys receive is amazing and the 3 ladies who come to work with them are awesome. Progress with both has been slow but steady. Nevin's first ST suggested we take him to see a Neurologists just to rule out any abnormalities with his brain. At one of Gavyn's check ups I took Nev with me and talked with the nurse practitioner about him, she told me to make an appointment with Dr. Arun who is also Gavyn's neuro doc. I set up the appointment and as the time got closer we were getting more concerned. It did not appear Nev had grown much if any in the last year.

Dr. Arun was glad to see us and get an update on Gavyn. She had not seen him since he left the PICU in March and it was now December. We started going over the family history and Nevin's history. She did a physical, observed him as we talked, played a few games with him. The first fear with a child who is not speaking is autism and she immediately ruled that out. She wanted him to have an eye check, MRI and blood work done. Thankfully they could do the MRI and blood work the previous week but the eye check would have to wait until next year. When I asked what she was going to look for with the blood work she immediately said she wanted to check his thyroid. His slow growth and development and coloring all made her think there was something wrong there. I was surprised our pedi doc had never said anything about this since it seemed almost obvious to her and she had only seen Nev once for 45 minutes. We would have to wait for blood work the previous week though.

Next Wednesday I took Nevin and Gavyn to Glennon for his MRI. Everything went smooth and we even had a nurse we had had before who was super nice and remembered us. (Of course it seems we know someone in every department at Glennon now on a first name basis...)When we had the clear to head home I asked when I should call for results and was told that it usually took about 48 hours for the MRI to be read and that would be Friday and you can never get through on a Friday so I better call Monday. We headed home and crashed after a long early morning gone all day. At about 4 in the afternoon we were all huddled up on the couch watching a movie and snoozing when my phone rang. I was more than surprised that it was Dr. Arun with news! She immediately let me know that the MRI was completely normal (thank God!) but,
"Nevin's blood work is very abnormal."
Your heart and stomach drop about 10 floors to your feet.
"His thyroid levels are very low, I am sitting with the endocrinologist, Dr.Myers and she needs to speak with you immediately about getting medication for him tonight. I am passing the phone over now."
Your mind does a complete 180 and you are trying your hardest to keep up with everything they are saying to you. I was instructed to get medication picked up THAT NIGHT and start giving it to him the very next morning. I was told how to give it to him since it was a pill and not a liquid. I was told when to call the office and that we would need to set up an appointment the next week. That everything was going to be better now. I hung up the phone and did not know what to think. Excitement? Fear? How about a little of both.

I was amazed when I called the office the next morning and said, "My son was just diagnosed with a thyroid problem and I need to set up an appointment." The nurse said, "Oh yes, you must be Nevin Stanley's mom, Dr.Myers would like to see him next Wednesday." Fastest appointment with a specialists EVER.

I was very nervous the next week meeting the new doc. Would we like her? What would she say? Was everything going to be OK? I did like her. She had a lot to say. Not all of it was peaches and cream. The best news was that his growth would catch up and fairly quickly. Maybe in a year I won't have people saying, "My how small he is." All of the other things we ever wondered or worried about would also change. He would have energy, he would not be depressed, his color would improve, everything in his body would strengthen. The bad news, it did slow him in his mental development. Most likely the reason he has been so slow with speech. He did not score as low as the developmental therapists was expecting though. He is a tough kid that has really fought his whole life with no one knowing. I am scared for him but I am trying to be hopeful. When they explained how terrible he has felt physically (effecting him mentally) all his life to take a step back and look at everything he does do it is amazing. Most of us probably would not get off the couch. Yet Nevin has crawled, walked, climbed, communicated, is starting to run all before being on meds. I can not wait to see how strong of a little boy he will be in a few months of being on meds. There will be a lot of prayers for this little man who is not going to be so little for much longer.

What a year

I am not going to lie, this has been the hardest year yet for the Stanley family. Each month (sometimes each week) seems to bring a new challenge to our family that we have to sort through and figure out. Yet, through it all, we have seen many blessings and miracles happen. It seems that most of our trials stemmed from Gavyn getting sick and ending up in the hospital. Yet, what blessings have come from Cardinal Glennon! He had a wonderful team of doctors and nurses there that cared for him and really did, "reveal the healing presence of God". If you read the history on the website there is a line that is so true, "Those who have come to know it well simply refer to it as "Glennon." They speak of the hospital as if they are talking about an old friend, and there's a warm feeling about the sound of that one word - "Glennon."" One of the many times we were at the ER a nurse started a conversation with my mom,
"Do you work here? You look so familiar."
"No, but we have lived here with one of our grandbabies that was so sick."
"Oh, I must have seen you then. Now you are just Glennon family."
Without the help of the doctors and nurses there I don't know where we would be right now! They are the ones who helped us get First Steps set up for Nevin and Gavyn. One of our other trials and blessings.

When we started First Steps with the boys we thought Nevin only needed Speech therapy and Gavyn would be the one needing much more. Without the wonderful team of therapists that we got hooked up with though we would have not known that Nevin needed help in so many areas. Nevin is such a sweet, fun loving, caring little boy that helps complete our family and whatever way he needs help we will get it for him, no matter the sacrifice. And my what the sacrifices have been! I read from Chambers this morning and one part of the devotion really stuck with me,
"An island in the sea may be but the top of a great mountain. Personality is like an island, we know nothing about the great depths underneath, consequently we cannot estimate ourselves." He goes on to talk about how God can though. That is how I feel most days. I can see the top of my peak but God keeps pulling the waters back to reveal more and more about myself. That I am stronger and can handle more than I would have ever thought. Never in a million years would I have used the word, 'Patient' to describe my personality. God saw something different though, that if I was made to work at it I could become that patient mother you see with 3 little boys. Nevin's speech delay has brought out the worst and best in me. I amaze myself sometimes at how I have come to communicate with him and teach him about communication. We are still trying to figure out all the pieces to Nevin. Some things are falling into place but somethings are still being figured out. He has seen a Neurologists, he is getting tests done, therapy each week... There are a lot of question marks for that little man but he is brave and strong and pushes through it with us each day.

My depression has come and gone a lot this year. My mom was able to take a leave from work early this year to help when Gavyn came home and before First Steps started. It was good timing for her to come and be with us every day. To help me figure out again how to be a mom on a daily basis after being away at the hospital for so long. I never had a normal life with 3 kids. There was never a normal adjustment. That time was the closest to a normal that we will probably ever feel. It was not long after she went back to work that our life started with OT, PT, ST, doc visits, neuro visits, neuro surg visits, preschool... It has been a hard road to hall and some days I just don't want to face the day. To try and figure out how to pay the bills and buy food. How to get Skyler to school on time and back in time for therapy. To try and have friends and not completely push everyone away from us. To learn how to watch other two-year-olds and babies develop and not compare my children and want to give up. To keep on keeping on with a plate that is past full. I have been blessed with a caring and compassionate husband that helps to bear the load, family who is always willing to help and friends who have come along side of me, walked with me, talked with me and cried with me.

God has always provided a way for us. There has always been enough work. There is always food on our table. Heat, water and light in our home. Extra money just when the car breaks down and sometimes from a random source that sent a check for just the amount we needed not knowing our car would break down. We have had people we don't even know be generous to us, giving money to a family member to pass to us, just because they wanted us to have it. Dropping money in our mail box to buy Christmas gifts for our kiddos. It never ceases to amaze me the ways that people can be generous. We could never thank them enough. And I pray that one day we will be able to do the same for someone else.

There is always a light at the end of the tunnel. There is always a blessing with a trail. You just have to keep having faith.