Jackson and I took Jonathan to see his ENT today. We went six weeks ago. At that time, Jonathan had a tympanogram done that showed a graph of ear activity. His right ear revealed negative pressure. That means it could act as a vacuum and suck in fluid. There was no fluid at the time but we were supposed to come back for a check up. We came back today.
I got there at 8am. The receptionist looks at me questioningly and says, "What do you need?" I am thinking, "What the heck does she mean by that?" I say, "We are here for an appointment." Duh. Then she says, "Oh, we deleted today's schedule and were not sure who was coming in. The doctor had surgery this morning and won't be in for an hour. You can wait." Yeah, sure. I will wait in the waiting room all morning because I have nothing to do. I stay at home so time is not precious. We just watch TV and eat a lot of cheetos so hanging out here will be a change. Yeah, thanks. I do say, "No, we won't wait. This is inconvenient for me and I won't come another day. We have plans this morning. I will come back." So, I came home and stubbornly found things to do for 20 minutes before going back.
We went back at 9am, waited for a while, and then got called back. The nurse did a tympanogram on each of Jonathan's ears. The doctor explained that now there is fluid in the right ear, something he was hoping would not be there. He explained that in kids with DS, he would rather be aggressive than wait. He wants to do tubes. He talked about how kids with DS are going to have speech issues and how they need their ears to be working - I can agree with that. Jonathan's speech and language will suffer if he cannot hear properly. He cannot afford that.
So, I left the office with plans for Jonathan to have tubes put in his ears next Wednesday. Jackson had his adenoids removed and tubes put in over a year ago so Jonathan's news does not really scare me like it did when it was time for Jackson to "go under the knife." Now I am thankful it happened to prepare me for today. However, now that I think about it, even this would pale in comparison to the heart surgery. Everything does. No sweat.
The surgery will be performed at Children's hospital. The doctor says that kids with DS don't always react to the anesthesia in a positive way. He just likes to be extra careful.
On a different note, Jonathan is attempting to communicate quite a bit with growling. If he is working hard, he growls. If something happens he does not care for, he growls differently. He used to cough at me, I would imitate it, and he would do it back to me. It seemed to be our little joke. He is our little bear.
Jackson slept in his big boy bed last night without the assistance of the bed rail. Jamie coated the floor with pillows in the event of a fall. However, Jackson was fine and has reached another milestone!
Thank you for keeping up with us!
Love,
Julie
juliewarren@mindspring.com
Wednesday, August 23, 2006
Tuesday, August 22, 2006
Betsy, Check Up, Evaluation
Aunt Betsy came this weekend with her friend, Claire. Their mission in coming was to try out for American Idol. Betsy thought that she would make a spectacle of herself so she could be on TV. Alas, the cameras weren't here. She tried out anyway, singing a Christina Aguilera (sp?) song. She purposely sung off-key and acted as if she was really good. Then she sang "I Saw the Sign" and did hand motions. I wish cameras had been running!
Today I took Jonathan for his nine-month check up. He got his thyroid checked because his head circumference and length had not increased significantly since last we were there. He has very little veins so he howled while they took blood from his arm. I must confess I shed a few tears as well. There is something mean about holding your child down and whispering, "It's going to be okay" while a needle is inserted in their arm, and they cry out in pain. Jonathan weighed 16 pounds at the doctor's office.
After that, we went to the Bell Center for Jonathan's fall evaluation. Jamie was there already and watched Jackson while I answered questions by Jonathan's team of therapists. They were impressed with him and kept saying how fabulous he looked. Jamie and I swapped about halfway through and he continued answering the questions while I entertained Jackson.
Towards the end of the evaluation, the nutritionist talked to me. I am usually a little unnerved by her because her advice is often not the same as Jonathan's pediatrician. She wants Jonathan taking vitamins, me taking vitamins, and us giving him 24 ounces of breastmilk or formula a day. Well, Jonathan's pediatrician says he is getting all the vitamins he needs through his food and me. I should be taking a vitamin and I do (not every day because I am lazy). I am no longer putting out that much milk so we will have to supplement with formula if we feel it is necessary to do what she says. Ugh! However, we want to do what is best for him and what can it hurt? Nothing. She also weighed and measured him. She got slightly different numbers than the pediatrician's office (weighs 15 pounds, 13.25 ounces). But, she said she thought that he looked good in terms of his measurements.
With all that behind us, we are ready to get into the groove of a schedule. We are ready for Mothers' Morning Out to kick in soon. It starts after Labor Day. Jack will go three days and Jonathan will go on one day.
We head to the beach this weekend with the Bishops - one last trip in the sun!
Take care,
Julie
juliewarren@mindspring.com
Today I took Jonathan for his nine-month check up. He got his thyroid checked because his head circumference and length had not increased significantly since last we were there. He has very little veins so he howled while they took blood from his arm. I must confess I shed a few tears as well. There is something mean about holding your child down and whispering, "It's going to be okay" while a needle is inserted in their arm, and they cry out in pain. Jonathan weighed 16 pounds at the doctor's office.
After that, we went to the Bell Center for Jonathan's fall evaluation. Jamie was there already and watched Jackson while I answered questions by Jonathan's team of therapists. They were impressed with him and kept saying how fabulous he looked. Jamie and I swapped about halfway through and he continued answering the questions while I entertained Jackson.
Towards the end of the evaluation, the nutritionist talked to me. I am usually a little unnerved by her because her advice is often not the same as Jonathan's pediatrician. She wants Jonathan taking vitamins, me taking vitamins, and us giving him 24 ounces of breastmilk or formula a day. Well, Jonathan's pediatrician says he is getting all the vitamins he needs through his food and me. I should be taking a vitamin and I do (not every day because I am lazy). I am no longer putting out that much milk so we will have to supplement with formula if we feel it is necessary to do what she says. Ugh! However, we want to do what is best for him and what can it hurt? Nothing. She also weighed and measured him. She got slightly different numbers than the pediatrician's office (weighs 15 pounds, 13.25 ounces). But, she said she thought that he looked good in terms of his measurements.
With all that behind us, we are ready to get into the groove of a schedule. We are ready for Mothers' Morning Out to kick in soon. It starts after Labor Day. Jack will go three days and Jonathan will go on one day.
We head to the beach this weekend with the Bishops - one last trip in the sun!
Take care,
Julie
juliewarren@mindspring.com
Sunday, August 06, 2006
Crawling and more highlights...
We went to the Jacks' lake house for our annual Sunday School party - Jonathan's first time. Jackson and Jamie rode the sea doo and mambo.
Jonathan was dedicated to the Lord July 23rd. My parents, Jamie's parents, Jamie's godparents, Emily, Ryan, Eric, Emma, and Granny all came. It was a neat celebration.
Last weekend we went to Greenville to hang out with the Voelkerts - Ryan, Em, Eric, and Emma. We went to the pool on Saturday and it was drizzling so no one was really there. Jackson loves Bible stories right now. He and Jamie will re-enact some of them - his favorite is David and Goliath. Jackson will be David, select his stones, hurl them at Jamie (Goliath) with his imaginary slingshot, etc. Jackson began using his action figures to play out Jesus being nailed to the cross and we had to explain that we don't do that... kind of hard to explain you can act out David and Goliath but Jesus dying on the cross for our sin is serious... I say all that to tell you about the pool. We were in the pool and I hear Jackson say, "Daddy, I want to walk on the water like Jesus." Jamie lifts Jack up, pool vest and all, and carries Jackson mid-air, making it look like Jackson is gliding across the water as Jackson yells, "Hey, everyone! I'm Jesus walking on the water!" He gets out, runs up to his aunt and uncle and says, "Aunt Emmy, Uncle Ryan! Did you see me? I walked on the water like Jesus!" Then to Jamie, "Daddy, I want to do it again!" Let's just say that is probably Jack's one and only time to do Jesus walking on the water.
Jim came and picked Jamie up to go back to Birmingham on Sunday. I went to see my friend, Bronwen, from college. Her girls, Rachel and Elizabeth, played with Jackson while Bronwen and I visited. After that, I headed to Columbia and spent a week with my family.
My mom and sister gave me a break by helping me tremendously with the boys. Jack and I went to a nearby park with my friend, Lori, and her son, Noah. Betsy, Jack, and I went to Fayetteville, NC, to see my brother before he went to Iraq on his second tour. We swam in the neighbor's pool. We jumped on my parents' trampoline. I watched some movies and had a few naps. One or both of the boys got up each night so I had a few naps while I was there. My dad was gone during the week and came back so we got to see him, too. It was a great visit for all of us.
Jonathan has been congested since May. His doctor says that is common and he is too little to be able to cough up what is in his chest and it will go away. This last week at Mom and Dad's at night, his breathing got barky, like a seal. I would listen to the monitor and pace over his crib, making sure each breath wasn't his last. After what we have been through with him, I am probably more nervous than I should be. He seemed to get better as the week progressed.
Jim and Betty babysat for us on the evening of our anniversary a few weeks ago and noticed his congestion and how it became more croupy. I had heard it before. I thought he was looking at me and coughing on purpose to get my attention. As it turns out, he was. He now looks at me, does this repeated croupy cough as he bobs his head up and down with a smile on his face. I respond in kind and he does it back. It is our little joke.
On Wednesday of last week, my mom watched Jonathan while I was out. She thought Jonathan crawled. I thought he had been doing it but thought perhaps I was being overly positive. He was! He is doing it himself! We are so excited! He is eating three meals a day, napping regularly twice a day, rolling all over the place, crawling, sitting up, sleeping through the night, and continues to wow us!
We got home last night after a smooth trip and a stop to see my college roommate, Rozalinde and her husband, Chris. Chris watched Jack so Roz and I could catch up. It was good to see them.
Thanks for keeping up with our story - I will post pictures later!
Julie:)
juliewarren@mindspring.com
Jonathan was dedicated to the Lord July 23rd. My parents, Jamie's parents, Jamie's godparents, Emily, Ryan, Eric, Emma, and Granny all came. It was a neat celebration.
Last weekend we went to Greenville to hang out with the Voelkerts - Ryan, Em, Eric, and Emma. We went to the pool on Saturday and it was drizzling so no one was really there. Jackson loves Bible stories right now. He and Jamie will re-enact some of them - his favorite is David and Goliath. Jackson will be David, select his stones, hurl them at Jamie (Goliath) with his imaginary slingshot, etc. Jackson began using his action figures to play out Jesus being nailed to the cross and we had to explain that we don't do that... kind of hard to explain you can act out David and Goliath but Jesus dying on the cross for our sin is serious... I say all that to tell you about the pool. We were in the pool and I hear Jackson say, "Daddy, I want to walk on the water like Jesus." Jamie lifts Jack up, pool vest and all, and carries Jackson mid-air, making it look like Jackson is gliding across the water as Jackson yells, "Hey, everyone! I'm Jesus walking on the water!" He gets out, runs up to his aunt and uncle and says, "Aunt Emmy, Uncle Ryan! Did you see me? I walked on the water like Jesus!" Then to Jamie, "Daddy, I want to do it again!" Let's just say that is probably Jack's one and only time to do Jesus walking on the water.
Jim came and picked Jamie up to go back to Birmingham on Sunday. I went to see my friend, Bronwen, from college. Her girls, Rachel and Elizabeth, played with Jackson while Bronwen and I visited. After that, I headed to Columbia and spent a week with my family.
My mom and sister gave me a break by helping me tremendously with the boys. Jack and I went to a nearby park with my friend, Lori, and her son, Noah. Betsy, Jack, and I went to Fayetteville, NC, to see my brother before he went to Iraq on his second tour. We swam in the neighbor's pool. We jumped on my parents' trampoline. I watched some movies and had a few naps. One or both of the boys got up each night so I had a few naps while I was there. My dad was gone during the week and came back so we got to see him, too. It was a great visit for all of us.
Jonathan has been congested since May. His doctor says that is common and he is too little to be able to cough up what is in his chest and it will go away. This last week at Mom and Dad's at night, his breathing got barky, like a seal. I would listen to the monitor and pace over his crib, making sure each breath wasn't his last. After what we have been through with him, I am probably more nervous than I should be. He seemed to get better as the week progressed.
Jim and Betty babysat for us on the evening of our anniversary a few weeks ago and noticed his congestion and how it became more croupy. I had heard it before. I thought he was looking at me and coughing on purpose to get my attention. As it turns out, he was. He now looks at me, does this repeated croupy cough as he bobs his head up and down with a smile on his face. I respond in kind and he does it back. It is our little joke.
On Wednesday of last week, my mom watched Jonathan while I was out. She thought Jonathan crawled. I thought he had been doing it but thought perhaps I was being overly positive. He was! He is doing it himself! We are so excited! He is eating three meals a day, napping regularly twice a day, rolling all over the place, crawling, sitting up, sleeping through the night, and continues to wow us!
We got home last night after a smooth trip and a stop to see my college roommate, Rozalinde and her husband, Chris. Chris watched Jack so Roz and I could catch up. It was good to see them.
Thanks for keeping up with our story - I will post pictures later!
Julie:)
juliewarren@mindspring.com
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