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.
Wednesday, December 29, 2010
Monday, December 13, 2010
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.
"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.
Tuesday, October 26, 2010
What's New With Who
What is new with the Stanley's...
Ryan just finished up a 6 week stint at MoBap college. He was blessed to get a freelance job redesigning their campus magazine. It was a good fit for him, good pay and he made good lasting connections for future work. Now he is back to regular freelance work and working from home.
I have been on a decorating kick and was able to make some simple changes to our family room and also painted our dinning room. My friend Becky drew an amazing tree on the wall that I am going to paint over the next week or so.
Skyler is super busy and excited about preschool! He loves his teacher, is making friends and learning so much. It is so great to see things we have been working on for the last year finally clicking with the encouragement of his teacher. Four is such a fun age, he is still so little and learning and but old enough to know so much! I love having conversations with him about God, Heaven, bugs, spelling ect. You can just see the wheels turning and clicking all day long.
Nevin is doing good with his Speech therapy. He is such a little clown and makes everyone laugh. Some therapy sessions go by so fast because he is cracking us up so much. He is also very into being a two-year-old and trying to make his own way. Stubborn does not begin to describe Nev. I feel like all kids are a puzzle you are trying to work out and he is a really hard one! I worry about him being so smart and silly at the same time.
Gavyn just started Physical therapy with his Occupational therapy. I love both of the ladies who come to work with him. They are good at what they do, good with him and so encouraging to me. His one therapist has a child with hydro as well, it has been a great bonding experience for me to have someone to talk to about things that she knows all about. I am his mom and I have my bad days of worry but in my gut I believe he will be fine.
We are busy but trying to have fun.
Ryan just finished up a 6 week stint at MoBap college. He was blessed to get a freelance job redesigning their campus magazine. It was a good fit for him, good pay and he made good lasting connections for future work. Now he is back to regular freelance work and working from home.
I have been on a decorating kick and was able to make some simple changes to our family room and also painted our dinning room. My friend Becky drew an amazing tree on the wall that I am going to paint over the next week or so.
Skyler is super busy and excited about preschool! He loves his teacher, is making friends and learning so much. It is so great to see things we have been working on for the last year finally clicking with the encouragement of his teacher. Four is such a fun age, he is still so little and learning and but old enough to know so much! I love having conversations with him about God, Heaven, bugs, spelling ect. You can just see the wheels turning and clicking all day long.
Nevin is doing good with his Speech therapy. He is such a little clown and makes everyone laugh. Some therapy sessions go by so fast because he is cracking us up so much. He is also very into being a two-year-old and trying to make his own way. Stubborn does not begin to describe Nev. I feel like all kids are a puzzle you are trying to work out and he is a really hard one! I worry about him being so smart and silly at the same time.
Gavyn just started Physical therapy with his Occupational therapy. I love both of the ladies who come to work with him. They are good at what they do, good with him and so encouraging to me. His one therapist has a child with hydro as well, it has been a great bonding experience for me to have someone to talk to about things that she knows all about. I am his mom and I have my bad days of worry but in my gut I believe he will be fine.
We are busy but trying to have fun.
Monday, September 20, 2010
Shopping
I remember when we were getting ready to be married and the one thing I was most nervous about was grocery shopping and cooking! Of all the things in marriage and those were the 2 things I was most nervous about. Over the last 5 years I have gotten much better with a buck and planning meals out. I still hate the actual process of going to the store and buying things (which is why I plan for a week and only set foot in the store 1 time all week!) but, I do love planning the meals and the time spent in the kitchen. Lately, I have taken to baking at night when the kids go to bed so that it gets done. When you are a mom of 3, you have to use every single minute as wisely as you can!
Tonight was shopping night, I spent $85 and here is what is on the menu...
Gavyn got Peas and Peaches this week. I buy fresh or sometimes frozen, cook it if I need to then, puree put in trays and freeze for the week. I also bought avocados just in case he doesn't like the peas!
.Fish Sticks (homemade not from a box!) with Mac & Cheese and Salad
.Oven Roasted Chicken with Potatoes, Carrots and homemade muffins
.Turkey Casserole with Broccoli
.Ranch Chicken (it is a Mexican dish with tomatoes, peppers, cheese...) and Chips
.Thai Chicken Salad and Rice
.Potato Kielbasa Skillet and Carrots
.Colorful Chicken Pizza and Salad
.Cherry Cheese Coffee Cake for Saturday morning
.New York Cheese Cake for Ryan's birthday
I don't normally do two big pastry items like that but with Ryan's birthday and being in a mood, that is what we get! It did make me spend a little more at the store than I normally would though. Most weeks I get out with spending around $70. I am sure coupon shoppers do better than that but with my crazy schedule I have not figured out how to sit down and incorporate that into my life yet. If it is a good week, maybe I will take pictures of our meals and post them with recipes.
Tonight was shopping night, I spent $85 and here is what is on the menu...
Gavyn got Peas and Peaches this week. I buy fresh or sometimes frozen, cook it if I need to then, puree put in trays and freeze for the week. I also bought avocados just in case he doesn't like the peas!
.Fish Sticks (homemade not from a box!) with Mac & Cheese and Salad
.Oven Roasted Chicken with Potatoes, Carrots and homemade muffins
.Turkey Casserole with Broccoli
.Ranch Chicken (it is a Mexican dish with tomatoes, peppers, cheese...) and Chips
.Thai Chicken Salad and Rice
.Potato Kielbasa Skillet and Carrots
.Colorful Chicken Pizza and Salad
.Cherry Cheese Coffee Cake for Saturday morning
.New York Cheese Cake for Ryan's birthday
I don't normally do two big pastry items like that but with Ryan's birthday and being in a mood, that is what we get! It did make me spend a little more at the store than I normally would though. Most weeks I get out with spending around $70. I am sure coupon shoppers do better than that but with my crazy schedule I have not figured out how to sit down and incorporate that into my life yet. If it is a good week, maybe I will take pictures of our meals and post them with recipes.
Sunday, September 19, 2010
What a weekend
This weekend was extra busy but wonderful! So many great things happened within two days.
For the last couple months, I have been going behind my husbands back planning a Surprise 30th Birthday Party. Like I did not have enough on my plate! But I love him and he does so much for us, plus he has not been looking forward to this birthday. I had lots of help from my wonderful parents and that made it possible to pull off. He was completely shocked, surprised, happy and grateful for the party. It was a great mix of friends, family, good food and lots of donuts. What more could you want?
Saturday during the party prep my little chunky monkey finally decided to roll from tummy to back and back to tummy! We have been getting very anxious about his lack of rolling seeing how he is now 7 months and had not rolled yet. We are hoping he keeps it up! He did it once more Saturday night and has been moving around a lot more when he is on his tummy.
This morning we woke up and got the boys ready for Pirate Fest. We made the drive to Saint Charles, stopped in to see my Aunt and Uncle for a short visit. Stopped for lunch at Cracker Barrel then on to Pirates! It was cool and muddy but well worth the drive. The boys had a great time going on a treasure hunt all over the Festival, getting treasures from the pirates to put into their treasure chests. Grandma bought them both wooden swords, Nevin was super excited! He was the one who asked for them and is going to cause lots of trouble with it. My hubby did the axe throw and hit the dummy in the middle of the chest and the middle of the head! It was kind of scary, not going to lie, don't mess with my husband! It was fun to watch though. The boys got to see the cannons get fired, lots of people walking around in crazy pirate outfits and Nevin even petted a rat. What a crazy day! How many times do you get to say things like that in a blog?
Tomorrow back to reality... Preschool, Cardinal Glennon, therapy..... Gratefully for a short break over the weekend.
For the last couple months, I have been going behind my husbands back planning a Surprise 30th Birthday Party. Like I did not have enough on my plate! But I love him and he does so much for us, plus he has not been looking forward to this birthday. I had lots of help from my wonderful parents and that made it possible to pull off. He was completely shocked, surprised, happy and grateful for the party. It was a great mix of friends, family, good food and lots of donuts. What more could you want?
Saturday during the party prep my little chunky monkey finally decided to roll from tummy to back and back to tummy! We have been getting very anxious about his lack of rolling seeing how he is now 7 months and had not rolled yet. We are hoping he keeps it up! He did it once more Saturday night and has been moving around a lot more when he is on his tummy.
This morning we woke up and got the boys ready for Pirate Fest. We made the drive to Saint Charles, stopped in to see my Aunt and Uncle for a short visit. Stopped for lunch at Cracker Barrel then on to Pirates! It was cool and muddy but well worth the drive. The boys had a great time going on a treasure hunt all over the Festival, getting treasures from the pirates to put into their treasure chests. Grandma bought them both wooden swords, Nevin was super excited! He was the one who asked for them and is going to cause lots of trouble with it. My hubby did the axe throw and hit the dummy in the middle of the chest and the middle of the head! It was kind of scary, not going to lie, don't mess with my husband! It was fun to watch though. The boys got to see the cannons get fired, lots of people walking around in crazy pirate outfits and Nevin even petted a rat. What a crazy day! How many times do you get to say things like that in a blog?
Tomorrow back to reality... Preschool, Cardinal Glennon, therapy..... Gratefully for a short break over the weekend.
Tuesday, September 7, 2010
Granola Bars
2c. Quick Oats
1c. Flour
1/2c. Wheat germ
3/4c. Brown sugar
3/4tsp. Salt
3/4tsp. Cinnamon
1/2c. Vegetable oil
1/2c. Honey
1 Egg
2tsp. Vanilla
1/2c. Applesauce or Peanut butter
1c. Raisins or Chocolate Chips
Preheat oven to 350. Grease 9x13 pan.
Mix together dry ingredients in large bowl.
Add wet ingredients (use 1/2c of veg. oil first, use the same cup for the honey and it will slip right out) mix until moistened.
Pat into pan and bake for 30 minutes.
I have done:
Raisins and Applesauce.
Chocolate Chips and Applesauce
Chocolate Chips and Peanut Butter.
Tuesday, August 31, 2010
Outings
Yay for the end of Summer! I say that with a bit of sarcasm. It seems this Summer was come and gone without me even noticing. Last Monday or so I woke up and realized it was not really Summer anymore (all the kids are going back to school) and we had not done our normal Summer activities. With Docs, therapies, sickness and getting used to 3 kids, plus Nevin's broken leg we had not done much. So, this past week I have managed to cram in every activity we would have normally done throughout the Summer. :)
One morning my wonderful friend Melissa called me and said she and Baby Vi suddenly had an open day and why not go to the Botanical Gardens? Of course! We scurried around the house and managed to get over to the Gardens within 30 minutes. (I am still not sure how I did that.) We had a lovely time enjoying nature, cooler weather and 4 wonderful kiddos.
Ryan had to work over the weekend and we snagged Grandma and Grandpa for a trip to the Zoo. We had not seen the new entrance and it was beautiful! The Sea Lion Show was so much fun and Skyler was brave enough to go down by the Sea Lions after the show for pictures. The Stingrays are always a big hit and Nevin really enjoyed watching them splash and stick their fins out of the water.
Today our friend Becky called and invited us to the Transportation Museum. That was another run around and get everyone ready in 45 minutes, crazy morning! Well worth it though. Skyler had a blast with his friends, Nevin got to ring the bell on the train and everyone had a great time in the playroom.
Uncle Matt came and took Skyler for a day. He was one lucky boy to go to the Science Center, McDonald's, visit his other Uncle at work and just hang out. I have managed one trip with all 3 by myself to the Discovery Room a couple weeks ago and it went good.
Preschool starts next week, yay! Nevin gets his cast off next week, yay! We have two hearing tests, 1 NeuroSurg appt., 1 Neurology appt., and a shots day as well all this month. I also realized that Nev and Gav's OT will most likely become my best friend shortly since I will be seeing her 1 or 2 a week for the next 3 years. :) Life is crazy.
One morning my wonderful friend Melissa called me and said she and Baby Vi suddenly had an open day and why not go to the Botanical Gardens? Of course! We scurried around the house and managed to get over to the Gardens within 30 minutes. (I am still not sure how I did that.) We had a lovely time enjoying nature, cooler weather and 4 wonderful kiddos.
Ryan had to work over the weekend and we snagged Grandma and Grandpa for a trip to the Zoo. We had not seen the new entrance and it was beautiful! The Sea Lion Show was so much fun and Skyler was brave enough to go down by the Sea Lions after the show for pictures. The Stingrays are always a big hit and Nevin really enjoyed watching them splash and stick their fins out of the water.
Today our friend Becky called and invited us to the Transportation Museum. That was another run around and get everyone ready in 45 minutes, crazy morning! Well worth it though. Skyler had a blast with his friends, Nevin got to ring the bell on the train and everyone had a great time in the playroom.
Uncle Matt came and took Skyler for a day. He was one lucky boy to go to the Science Center, McDonald's, visit his other Uncle at work and just hang out. I have managed one trip with all 3 by myself to the Discovery Room a couple weeks ago and it went good.
Preschool starts next week, yay! Nevin gets his cast off next week, yay! We have two hearing tests, 1 NeuroSurg appt., 1 Neurology appt., and a shots day as well all this month. I also realized that Nev and Gav's OT will most likely become my best friend shortly since I will be seeing her 1 or 2 a week for the next 3 years. :) Life is crazy.
Subscribe to:
Posts (Atom)