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.
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