As I sit here to update you all, Jamie is at work, Jackson is snoozing in his room, and Jonathan is on the floor, doing raspberries, rolling, and scooting/crawling. All is well in my world at this moment.
We saw my parents a couple of weeks ago. It was a great visit. My sister came to stay here with us for a week. I was able to cram in tons of appointments and errands and was so grateful for the help. We went to the beach last week with Jamie's family - his parents, his sister and her husband and children. Jackson and Jonathan did not sleep well while we were there but we had a wonderful time. We got sun, ate constantly, and relaxed.
I took Jonathan to an opthamologist today to have his vision checked. Jackson went with us. He was fairly well-behaved. "Toy Story" was piped into the room which he found thrilling. We are trying to phase out movies like that because he is starting to mimic fight scenes and the cynical banter. However, I was grateful for the distraction! The doctor promised him some treats and he seemed disappointed and, upon receiving a sticker, asked where the suckers were.:) Children with Down Syndrome are more likely to have vision problems so it is wise to stay on top of it. Jonathan's vision was 20/20 today although it seems he is tending toward nearsightedness and will probably need glasses in a few years. The doctor said that his eyes look 100% healthy with the exception of his blocked tear ducts. His eyes tear a lot and get kind of gooey from a back-up in the channel that should drain his tears. He has had this since birth and it seems to be getting better. Hopefully, it will correct itself. If not, he can have a procedure done at 12 months that should clear it up.
It is hard to say how we are doing these days. Some days are wonderful and others are really tough. I am really speaking for myself rather than Jamie. I find that the days I dwell on a blurry past or unknown future combined with filling in the blanks with my imagination, I can develope quite a case of emotional upheaval. At the beach last week, I was able to have a really meaningful conversation with my mother-in-law despite children shouting, snatching, crying, etc. so it is significant that it stuck with me. It is just what I needed to hear.
1 - God is more concerned with my character than my circumstances. What we put so much emphasis on is not necessarily what He finds important. I felt immediate relief upon hearing this from Betty. I don't need to cling to my circumstances and rant and rail about how unfair they are or how tough they are. He knows but He is more concerned with my response.
2 - I put too much stock in lies from Satan. I have noticed recently that a lot of my unhappiness stems from believing lies...
a. Weight is very important.
b. You need to have a perfectly clean house if you stay at home because... you stay at home. Otherwise people will
think you sit around and eat candy and watch TV.:)
c. What others think is very important.
d. Your children should behave in a way others find appropriate even if those people don't know what has transpired that day.
e. If someone has hurt you in the past, keep your distance from them and don't let them close. They will only hurt
you again.
f. The way to please God is to strive for perfection on your own strength. He will be impressed... as will others.
g. You must be tough. Don't ask for help - it suggests weakness.
I put so much pressure on myself to be perfect and to be tough. The last six months have really taken a toll on me and hammered me in these areas. I have been struggling in these areas for far longer than Jonathan has been alive but the circumstances under which he was born have really highlighted my struggles and have given me a perspective I might have been lacking the rest of my life had he not been born with his condition.
3 - There is no magic pill. I know this but I forget and find myself trying to analyze my life to death, convinced I will find the one thing that will take away the pain. I will never find the formula to make everything perfect in my life. I will struggle on a daily basis for the rest of my life. Being a Christian does not make my life easier - sometimes I think it is tougher. Being a Christian means recognizing that I am powerless and I need help. I have worked my whole life not to need God and I never knew it. He has allowed me to be brought to this place where I need help and I cannot deny it. I cannot go it alone. It is not about more scripture memory, more Bible studies, better behavior, etc. It is about committing to surrendering my will to His on a daily basis.
4 - It is a daily choice. Not only is there no magic pill, but it is a daily choice to choose to allow the Holy Spirit to live through me. I must choose to live for Him rather than myself. Again, I find a sense of peace in that. I don't have to live for me anymore. I don't need to be living in a constant state of self-preservation. I can let go of hurts and disappointments, focusing on living for Him instead of myself. However, I have to commit to it every day because complete healing will not occur with one prayer. In fact, I won't find complete peace until I get to heaven. I cannot do it alone. I thought I could keep searching until one day I would be one of those people that you read about - those people that are Christians and seem perfectly at peace all the time, who don't appear to struggle with anything. That is a myth! Maybe those people exist but I don't think so. What is probably more accurate is that those people get up every morning, recognize they are powerless, pray intensely for help, and surrender their own desires on a daily basis.
Thanks for following our story. I will post pictures when I find them. We had some great ones from the beach!
Julie
juliewarren@mindspring.com
Tuesday, May 23, 2006
Friday, May 05, 2006
Jesus Loves Me
Sunday morning I woke up to the sound of "Jesus Loves Me." Jackson's room is right above ours and he was singing to himself. There is nothing like the sound of a child's voice, singing praises. He constantly reminds me to have the faith of a child because I complicate things so much with my analytical brain. He also walks around the house singing, "Jesus, you're my star, my best friend, you're my super hero." He must have learned that one at Mothers' Morning Out because I have never heard it. Again, a reminder from a child of where my focus should be. Yesterday, he took Jonathan's arms, raised them up in the air, and said, "Praise the Lord! Mommy, I just helped Jonathan praise the Lord!" Wow. From the lips of children come the most brilliant things.
Wednesday, Jonathan and I attended Farm Day for the Bell Center. It was a day out at the farm of a retired PT. I knew Jonathan may not remember the animals but I am always on the prowl for new friends, positive people to interact with, who can provide encouragement. It proved to be a good move. I had had some dark days and needed some positive feedback. Tina, another mother, introduced me to her son with DS, Charlie. Charlie is 20 months old and just as cute as he could be. He was wearing a little smocked outfit and had a cute haircut. He could not speak well or walk but was on his way to both. He could sign what he wanted to communicate. It is amazing how different that makes someone appear. If they cannot talk, your perception is so different. The fact that he could communicate really made a difference in the way I perceived his functionality.
Charlie's mom reminded me not to look into the future, which is what I had been doing over the past several days. It always gets me down. The problem with it is that I don't know the future and so my imagination runs wild. It is where Satan gets a foothold in my life everytime. She also said that it is not even accurate to assume Jonathan is going to be where current DS twenty-somethings and up are because most of them have not had the early intervention our kids are getting now. She said she met a young adult with DS the other day and he was entertaining, silly, and very concerned about his hair and clothes. They said he was so refreshing and such an positive picture.
We did not have the Bell Center on Tuesday but our PT from the government organization, Jane, came. She worked with Jonathan and told me at the end that she was very impressed with his progress. Jonathan is rolling - a lot. You put him down and he rolls across the room. When he is placed on the floor, he lies on his tummy and looks around. He is getting very strong. He likes to roll left rather than right. If you push him to roll right, he resists. It must not be as comfortable yet that demonstrates his strength because he is pushing against you. He is also scooting. This child is so determined and works so hard. I am so proud for him! He is doing raspberries with his mouth and has been for a couple of months. He will catch my eye, smile, and start talking. I love it! He is batting at toys and figuring out how to get them to work. He pushed a truck yesterday and I was thrilled. Amazing how excited you get over the smallest things.
Yesterday Jonathan worked with Holley, his PT at the Bell Center. She worked him hard and also commented on his strength and progress. She wants us to start working on helping him to roll to a sitting position. He can already sit well with help, without toddling. She showed me ways to help him prop sit and then to roll to a sitting position. I am having to do what they show me and take notes now so I don't forget what to do.
Jackson is such an asset to Jonathan and I am sure the reverse is true. I could not ask for a more loving relationship. Jackson wants to kiss him, hug him, and hold him all the time. He likes to feed him with a bottle, too.
I talked to a mother this week who found out that she is having a girl who tested positive for DS. I was glad that I could "pay it forward" and encourage her, empathize, and offer advice. I am grateful for the opportunity to help others in this way.
Please pray for our continued good health. Jonathan is over 12 pounds now - pray he continues to grow. Pray that his ear canals are not blocked so he can hear sounds. Blocked ear canals will stunt his ability to speak well and to develop cognitively. Pray for my outlook and that I have a day-to-day attitude rather than venturing to an imagined future. Pray we are positive.
Thank you for your prayers,
Julie:)
Wednesday, Jonathan and I attended Farm Day for the Bell Center. It was a day out at the farm of a retired PT. I knew Jonathan may not remember the animals but I am always on the prowl for new friends, positive people to interact with, who can provide encouragement. It proved to be a good move. I had had some dark days and needed some positive feedback. Tina, another mother, introduced me to her son with DS, Charlie. Charlie is 20 months old and just as cute as he could be. He was wearing a little smocked outfit and had a cute haircut. He could not speak well or walk but was on his way to both. He could sign what he wanted to communicate. It is amazing how different that makes someone appear. If they cannot talk, your perception is so different. The fact that he could communicate really made a difference in the way I perceived his functionality.
Charlie's mom reminded me not to look into the future, which is what I had been doing over the past several days. It always gets me down. The problem with it is that I don't know the future and so my imagination runs wild. It is where Satan gets a foothold in my life everytime. She also said that it is not even accurate to assume Jonathan is going to be where current DS twenty-somethings and up are because most of them have not had the early intervention our kids are getting now. She said she met a young adult with DS the other day and he was entertaining, silly, and very concerned about his hair and clothes. They said he was so refreshing and such an positive picture.
We did not have the Bell Center on Tuesday but our PT from the government organization, Jane, came. She worked with Jonathan and told me at the end that she was very impressed with his progress. Jonathan is rolling - a lot. You put him down and he rolls across the room. When he is placed on the floor, he lies on his tummy and looks around. He is getting very strong. He likes to roll left rather than right. If you push him to roll right, he resists. It must not be as comfortable yet that demonstrates his strength because he is pushing against you. He is also scooting. This child is so determined and works so hard. I am so proud for him! He is doing raspberries with his mouth and has been for a couple of months. He will catch my eye, smile, and start talking. I love it! He is batting at toys and figuring out how to get them to work. He pushed a truck yesterday and I was thrilled. Amazing how excited you get over the smallest things.
Yesterday Jonathan worked with Holley, his PT at the Bell Center. She worked him hard and also commented on his strength and progress. She wants us to start working on helping him to roll to a sitting position. He can already sit well with help, without toddling. She showed me ways to help him prop sit and then to roll to a sitting position. I am having to do what they show me and take notes now so I don't forget what to do.
Jackson is such an asset to Jonathan and I am sure the reverse is true. I could not ask for a more loving relationship. Jackson wants to kiss him, hug him, and hold him all the time. He likes to feed him with a bottle, too.
I talked to a mother this week who found out that she is having a girl who tested positive for DS. I was glad that I could "pay it forward" and encourage her, empathize, and offer advice. I am grateful for the opportunity to help others in this way.
Please pray for our continued good health. Jonathan is over 12 pounds now - pray he continues to grow. Pray that his ear canals are not blocked so he can hear sounds. Blocked ear canals will stunt his ability to speak well and to develop cognitively. Pray for my outlook and that I have a day-to-day attitude rather than venturing to an imagined future. Pray we are positive.
Thank you for your prayers,
Julie:)
Monday, April 24, 2006
More pictures
We had Jackson's birthday party with friends outside in our back yard last Friday. The boy is very territorial when it comes to his toys and playset. He was so afraid that someone might try to swing on his bucket swing (he can swing on the regular ones just fine) that he decided simply to stay there most of the party and call out greetings to his friends from there as they arrived.
Jonathan at Jackson's friend birthday party.
Jackson's birthday theme was bugs, bugs, bugs! Here he is at our family party blowing out the candles on his dirt and bug cake.
We went to go see the Easter Bunny at the zoo the morning of Jackson's birthday, April 15. As you can see, 1945 called and wanted its Easter Bunny suit back.
Jackson and Jonathan on a tractor in the farm area of the Birmingham Zoo. Jackson had no interest in the tractor until I placed Jonathan on it. Then he declared it his "favorite," sat there playing around for at least 10 minutes, and we had to pry him off of it so we could leave.
The Warren Family, Easter 2006Sorry for the potty and speech talk but the update is that Jackson is no longer wearing diapers at all and stays dry at night, too! His speech is consistent and clear with little stuttering.
Jackson went to the dentist and had a good visit. We went to the zoo afterwards with friends. After lunch, we saw a few more exhibits and then headed to a new eating/play area. Part of the play area is a playground and the other part has rubber on the ground with fountains that spurt intermittently. Kids get out there in diapers, underwear, bathing suits, clothes, etc. running through the spurts. We opted to get wet after Jack finished running around on the playground. I took off Jackson's shirt, thinking he could get his shorts wet. Jackson seemed to think that would not be comfortable because when I turned around after putting away his shirt, he had shed his clothes - ALL of them. Two women sitting nearby could not stop laughing - more like twittering. Jackson was simply looking on at the other children in the water, ready to get in, totally oblivious to the fact that being completely unclothed in a public setting might be slightly inappropriate. Now, keep in mind that the place was full of kids from schools, kids with daycares, and stay-at-home moms out for the morning. It was hysterical and what was even more funny was that he was so completely at ease in his "birthday suit." After quickly slapping on a pull-up, Jackson ran out into the water and I followed with Jonathan.
The last few weeks have been pleasant and peaceful. Thank you to those of you still praying for us. We have been healthy and we are so grateful. Jamie and I are reminded daily that we are not in control and I am praying each day that the Holy Spirit would permeate my life and that I would yield control to the Lord. I am finding such peace and contentment in letting go.
Julie
Tuesday, April 18, 2006
Special Weekend
This weekend was special - marked by Jackson's celebration of his third birthday and Jonathan's first Easter.
This Easter Sunday's message was challenging. Our church is currently on the prowl for a new minister. David has been our church's speaker for a six-week series called "Unstoppable." His messages have prompted a lot of personal soul searching. On Sunday he ended the message with a question: Is Jesus the Master of your life?
Jonathan's birth brought so many unexpected things and my world shifted dramatically in an instant. What was so difficult for me to digest was that these changes were permanent. I was totally out of control. All of my life has been lived in an effort to achieve perfection, to keep up appearances, and to stay in control. A guy I coached with once said he was glad that I wasn't a police officer because I would never go off duty.:) I laughed at the time, but that is the pattern of my life - I neither accept nor extend grace. The standard for myself is perfection and, therefore, is the one I demand of everyone else. That mentality is in direct opposition to what Christianity is.
As a Christian, my basic knowledge is this - I am a sinner and I am unworthy to enter heaven or have a relationship with God on my own merit. A price has to be paid for my sin and since God is holy, He cannot accept my imperfect offering. It has to be an offering that is completely perfect and holy. Jesus, who was without sin, came to this earth and died in my place. I accept Christ's payment. He is my "ticket" to heaven and to a relationship with God while I am here on this earth. I know this in my head, but I realize that I have not always believed it in my heart.
I experience my life like a bank account. Growing up, I bought into the picture that others painted of me. To keep my place on the pedestal, I would deposit things into my account - good grades, a hard work ethic, daily devotionals, abstinence from foul language, rigid dating standards, etc. If something happened to end my stint of perfection in an area, I would become angry and defensive, listing all the things I had done for God and how unjustified the situation was. Eventually, things would improve and I would think I had wooed the Lord to my way of thinking. I thought I was superior to others and did not deserve the same treatment because of all the good I had done.
Now I look at Jonathan's scar on his chest and all it represents - a need for a heart change, the realization that I am not perfect, and the knowledge that I cannot survive without help - grace. Christ died in my place - yes, my place. I can do nothing to earn my way no matter how "good" I am.
Is Jesus the Master of my life? NO. I fight Him on a daily basis for control. From this day forward, I want to accept His grace, extend it to others, and invite Him to be my Master. I am so tired. I will let go of the bank account/police officer mentality and let God perform open heart surgery on my heart. He is the Great Physician and the Great Healer. I need to let Him do His job.
Julie:)
juliewarren@mindspring.com
This Easter Sunday's message was challenging. Our church is currently on the prowl for a new minister. David has been our church's speaker for a six-week series called "Unstoppable." His messages have prompted a lot of personal soul searching. On Sunday he ended the message with a question: Is Jesus the Master of your life?
Jonathan's birth brought so many unexpected things and my world shifted dramatically in an instant. What was so difficult for me to digest was that these changes were permanent. I was totally out of control. All of my life has been lived in an effort to achieve perfection, to keep up appearances, and to stay in control. A guy I coached with once said he was glad that I wasn't a police officer because I would never go off duty.:) I laughed at the time, but that is the pattern of my life - I neither accept nor extend grace. The standard for myself is perfection and, therefore, is the one I demand of everyone else. That mentality is in direct opposition to what Christianity is.
As a Christian, my basic knowledge is this - I am a sinner and I am unworthy to enter heaven or have a relationship with God on my own merit. A price has to be paid for my sin and since God is holy, He cannot accept my imperfect offering. It has to be an offering that is completely perfect and holy. Jesus, who was without sin, came to this earth and died in my place. I accept Christ's payment. He is my "ticket" to heaven and to a relationship with God while I am here on this earth. I know this in my head, but I realize that I have not always believed it in my heart.
I experience my life like a bank account. Growing up, I bought into the picture that others painted of me. To keep my place on the pedestal, I would deposit things into my account - good grades, a hard work ethic, daily devotionals, abstinence from foul language, rigid dating standards, etc. If something happened to end my stint of perfection in an area, I would become angry and defensive, listing all the things I had done for God and how unjustified the situation was. Eventually, things would improve and I would think I had wooed the Lord to my way of thinking. I thought I was superior to others and did not deserve the same treatment because of all the good I had done.
Now I look at Jonathan's scar on his chest and all it represents - a need for a heart change, the realization that I am not perfect, and the knowledge that I cannot survive without help - grace. Christ died in my place - yes, my place. I can do nothing to earn my way no matter how "good" I am.
Is Jesus the Master of my life? NO. I fight Him on a daily basis for control. From this day forward, I want to accept His grace, extend it to others, and invite Him to be my Master. I am so tired. I will let go of the bank account/police officer mentality and let God perform open heart surgery on my heart. He is the Great Physician and the Great Healer. I need to let Him do His job.
Julie:)
juliewarren@mindspring.com
Friday, April 14, 2006
Weight gain, Birthday Celebration
Jonathan went to have his last (hopefully) synagis shot on Thursday. Before giving him his shot, they weigh him to insure he is receiving the proper dosage. With his diaper on, he weighed 12 pounds, two ounces! Slowly but surely, he is gaining weight!
Jackson celebrated his birthday today with friends. It was high drama. He was on the bucket swing, calling out to people from the swing for most of the party. He did not want to surrender the swing for fear someone might use it. :) We just played outside, had snacks, and ate cupcakes. His friends were a lot of fun and I was so glad so many of them could come. I cannot believe he is three years old!
Tomorrow we celebrate Jackson's birthday with family. We hope to avoid meltdowns.:)
Have a wonderful Easter,
Julie:)
Jackson celebrated his birthday today with friends. It was high drama. He was on the bucket swing, calling out to people from the swing for most of the party. He did not want to surrender the swing for fear someone might use it. :) We just played outside, had snacks, and ate cupcakes. His friends were a lot of fun and I was so glad so many of them could come. I cannot believe he is three years old!
Tomorrow we celebrate Jackson's birthday with family. We hope to avoid meltdowns.:)
Have a wonderful Easter,
Julie:)
Wednesday, April 12, 2006
Tuesday, April 11, 2006
Playing Catch Up
Warren family visits Thomas the Train. Jackson was thrilled!
Pops arranged our Thomas trip.These are Jamie's parents (Nana and Pops). 
Jackson "wrestling" with Jonathan.Thursday, March 30 - Pops went with Jonathan and I to the Bell Center. Jonathan did well. He was weighed while we were there - 11 pounds, 12 ounces! The dietician reminded me to be taking a vitamin and wanted to know when we would begin adding cereal. No clue. I need to ask!
Friday, March 31 - We went to Thomas the Train in Calera at an old railroad station. Jackson ran from train to train, unable to contain himself. I am being serious - the kid did not walk until we got in line to wait to ride the train. He would climb up on the old trains and commandeer them - he's a bit territorial these days.:) Jonathan took it all in stride.
Saturday, April 1 - Jonathan awoke around 1:30am with a cough. It was the croup - that unmistakeable barking sound. We opened up the freezer, took him outside, and finally settled on sitting in the bathroom with a hot shower running. We stayed up with him for about two hours. We ran the humidifier and then Jamie slept in his room with him. Jamie took him to the doctor the next morning where they heard the congestion but no wheezing so he was in the clear. However, he is too young for antihistimines so we just have to wait out the congestion.
Wednesday, April 5 - We went to see the cardiologist. It was wild. I went alone with the boys - no big deal, right? It started with not finding a parking space in the deck. I ended up at the doctor's office 30 minutes late because I parked in another deck a couple of blocks away. Imagine carrying a baby in a carrier in one arm while fighting for your three-year-old's hand with the other hand in downtown traffic! We got there and had to wait because we were late. Upon our arrival, Jackson took control of the toys in the waiting room. Sometimes you just have to act sorry on the outside and contain the laughter on the inside.
We were called back to weigh Jonathan. While I was trying to undress Jonathan and keep an eye on Jackson, Jackson stepped on a nurse's foot - she had on sandals. She made a real show of the intense pain she must have felt from a small child barely grazing her foot with his little shoe - I found it rather amusing and had to keep from smiling. I made certain we properly apologized then explained to Jackson he needed to stay seated - amazing the social pressures of needing to feel like you have properly disciplined your child to the satisfaction of another when really it is no big deal.
We went back to the waiting room and Jackson ran in the play area where he entertained himself. He jumped up shortly thereafter declaring he needed to use the potty. I was thrilled. Of course, a doctor's office is not the ideal place for your child to use the potty. I grabbed all of our stuff, dragged it in the bathroom, hiked Jack up, and then he decided it was a false alarm. About 30 minutes later, we got called back. Jackson climbed all over the place, trying to be beside his baby brother, worried the doctor was going to hurt him. I let Jack have some goldfish and regretted it the instant Jonathan kicked them all over the floor.:) I tried to occupy Jackson with an explanation of the ultrasound and what the colors meant. He was enthralled. Too soon he was bored. He was jumping from stool to stool, flipping the lights on and off. It was interesting, to say the least. Actually, it was quite hilarious but, again, I put on the stern face.
Jonathan weighed in at 11 pounds, 14 ounces. He will continue to take one-fourth on an aspirin daily for another month. After that, no meds! His heart looked good and he had a little congestion left over from the croup Friday night. The doctor said that he looked and sounded wonderful and no need to see him until a year from now!
On the way out, Jackson did use the bathroom and I had no treats with me. We got McDonald's on the way home for him as a reward. We stopped and got lunch for Jamie and me elsewhere. We dropped it off at Jamie's office and headed home. When I got home, I saw a cop car parked outside our house. I parked at the top of the driveway but not in the garage. Our door between the garage doors was open. I left the boys in the car with the windows down and crept inside the garage. The cop called to me from the top of the stairs. When it was established that I was the homeowner, she apologized for pointing her gun at me - I did not know she was pointing her gun at me! She said she was sorry for going through the house - I thanked her. People must be pretty rude with them for checking things out - I was thankful she had gone inside. It was established, after talking to her and ADT, that one of our doors set off the alarm. It probably blew open (we found out on Sunday that our former neighbor did it!).
I went outside and Jackson was screaming. I assumed it was because he was mad he had to stay inside the car. By this time, I was low on patience. I told him to chill out and calm down. The police officer said, "He is saying something about a bug." Low and behold, a yellow jacket was in the car. So, I let him out and could have kicked myself for not paying better attention! He proceeded to run to the top of the backyard and yell, "Look! Look!" I told him to come back down and go inside, that he was taking a nap. This did not go over well either. I apologized to the police officer, she left, and we went inside. Jamie came home and checked out the house just in case. I was a little afraid someone might jump out of a closet or from underneath the bed or something.
Jackson went down for a nap. When he woke up, we went outside. He ran to the same spot in the yard and yelled, "Look! Look!" I went over there to look. At the base of a tree was a raccoon. I was afraid to get too close. I felt badly for it because flies were swarming it. I assumed it was dead but noticed its chest rising and falling. I called four different organizations, trying to figure out what to do. If it was hurt, I wanted to help it and not let it get eaten alive. The consensus was that it had something called distemper - similar to Alzheimer's in humans. An hour or so after we saw it, it got up and walked around as if it were in a drunken stupor. It would lay down, seize, and then get up. It walked around as if its legs were not its own. When Animal Control called the next day, the raccoon was no where to be found. Animal Control said it probably crawled in a hole to die - so sad!
That was quite a day.
Thursday, April 6 - We went to a session with a speech pathologist from Ohio. He was here for a conference and we were able to meet with him so he could evaluate Jonathan and give us suggestions. His main philosophy is to imitate your child through methods he calls balancing and matching. Balancing is imitating your child and adding a bit more. Matching is doing exactly what your child does. Anyway, that is the basic concept. He said we should interact with Jonathan by imitating and taking turns with him. For instance, he might make a sound and wave his arms. We make the sound back and then move our arms. It is amazing because he will respond and do the same thing again or something else. What you find is that you are having your own "conversation" with him. The doctor said that DS kids have a tendency not to be social and that if we teach them to interact socially, the rest will follow. He said that after 35 years of practice, he has seen clients with DS accrue lots of knowledge but are unable to interact on a social level. We need to teach them to interact. I think he was trying to stress the danger in being too focused on physical therapy and academics. There is a balance to everything and our kids with DS need to be social because academics will only get them so far. This guy was phenomenal. He said that Jonathan did a good job of following us and connecting. The website where you can get more info is www.jamesdmacdonald.org. I would highly recommend it!
Saturday, April 8 - Jonathan turned from his back to his tummy!
I went to the speech conference portion for parents. I was nervous because he would ask us questions about our children and I would answer, hoping I had the "right" answer. I usually did not. I think my thought processes are so academic and his point was that will hurt Jonathan more than help him. I need to play with him, imitate him, try to have fun with him and simply relax!
Tuesday, April 11 - We went to the Bell Center while Jackson was at Mothers' Morning Out. Jackson has his third birthday this Saturday and he is excited. He told me exactly who he would like to come. It ought to be fun! He also said to me today, "Mommy, you are a good cooker!" Ha! Aren't our kids wonderful?
Please keep praying,
Julie
Monday, April 03, 2006
Pictures
Jamie and Julie at the Guild Gala. 
Jonathan playing on the boppy.
My dad with Jonathan.
My mom with Jonathan.
Both kids with "Gigi" (my grandmother).
Jackson with Grandpa.
Jackson with the Dobbins' family dog, Rupp.
Pops (Jamie's dad) flew us to Columbia in his plane.
Jackson was evaluated today and the consensus that what he is going through is common and there is no need for him to see a speech therapist on a regular basis. Yeah! We thought that was probably the case but were not sure.
If you are reading this and you know of anyone who needs some encouragement because they have/had a child with Down Syndrome and/or the heart condition and you think we could be of help to them, let me know at juliewarren@mindspring.com. I would love to help or offer encouragement to others as we have been helped.
Have a great week,
Julie:)
juliewarren@mindspring.com
Friday, March 31, 2006
More Details...
Good morning. I realized after my last post that I omitted some details over the last few weeks...
Jonathan had his four month check up two weeks ago. He weighed in at 11 pounds! He got his shots and had his next to last synagis shot two days after his check up. The synagis shot protects him from contracting RSV.
Jackson is using the potty on a regular basis now. About a month ago or so, we had a "Come to Jesus" talk. I told him he could use the bathroom and it was time he started. We spent one day where we went every hour, then every 30 minutes, and then every 15 minutes. When he would go in his pants immediately after an attempt, I knew it was an issue of control. Once he had success, he started wanting to go and now accidents happen only on occasion. I think a big part of his success is tied to Jonathan. I kept making a big show of telling Jonathan how big his brother was, using the potty and wearing underwear. Each time Jack went, I would show Jonathan and make a big deal. Once I forgot to praise Jackson in front of Jonathan and after using the bathroom, Jack said, "Mommy, tell him what I did!" I think he enjoyed impressing his little brother.
Jackson is still stuttering so I am taking him to a speech pathologist on Monday. Hopefully the stutter will still be there so she can tell us if it is a big deal or not. I don't think it is, since it comes and goes. However, we want to be sure and not ignore something that might be significant.
I am so grateful for how loving Jackson is with Jonathan. He wants to lie down by Jonathan constantly, help feed him (when I use a bottle:)), give him toys, kiss him, and show him how to do things. Jonathan reciprocates by smiling, laughing, and talking. It is so neat to watch.
We are rarely feeding Jonathan breastmilk with bottles. There is no need to document how much milk he is getting now that he is gaining weight. He is only nursing unless we are out running errands, at church, etc. The pediatrician and dietician are impressed with his weight gain on breastmilk alone. He is developing well considering he had open heart surgery less than two months ago.
Jonathan's scar continues to heal beautifully. Before I went to Columbia last week, Jamie kept insisting one place was not healing correctly. There was a white scab - it looked like a thick piece of skin that was not fully healed. I said it was a scab and not to worry about it. The pediatrician agreed with me. Jamie was bathing Jonathan one night and kept playing with that piece of skin. Finally, something popped through - it looked like fishing line. It was a souture that was irritating the skin just below the scab. Jamie had been right all along - the souture was irritating the skin and needed to be clipped. I called the cardiologist's office and spoke with a nurse. She walked me through the process and said I could do it. I opted not to. I figured if I could, the pediatrician could. I did not want to take chances on causing some kind of infection because I didn't sterilize something enough. I took Jonathan in and the pediatrician pulled the souture as tightly as she could and clipped it as closely to the skin as possible. Jackson saw what was going to happen, heard Jonathan whine, and said, "I'm worried!" The doctor said, "Do you want a sucker?" That calmed him down.:) The child is definitely my son - he finds immediate comfort in food! Since Jamie freed up the souture, it looked less red. It looks even better now that it has been clipped.
Yesterday we went to the Bell Center. Jonathan is rolling from his tummy to his back. With very little help, he rolled from his back to his tummy. He is holding his head up high while on his tummy - great considering all the work done on his chest. He is chattering like crazy, batting his arms, kicking his legs, scooting across the floor in an attempt to crawl, and so much more. I am simply grateful for these things! They give me hope.
We are functioning - we have bad days and good days. For the most part, we are faring well. We love our boys. We still would not have picked this situation. Please pray for us. Pray for Jackson's stutter, Jonathan's weight gain and development, and our outlook on the future. I want to be the parent that is positive and that the DS is a component of our family but is not who we are.
I will post pictures later!
Julie
Jonathan had his four month check up two weeks ago. He weighed in at 11 pounds! He got his shots and had his next to last synagis shot two days after his check up. The synagis shot protects him from contracting RSV.
Jackson is using the potty on a regular basis now. About a month ago or so, we had a "Come to Jesus" talk. I told him he could use the bathroom and it was time he started. We spent one day where we went every hour, then every 30 minutes, and then every 15 minutes. When he would go in his pants immediately after an attempt, I knew it was an issue of control. Once he had success, he started wanting to go and now accidents happen only on occasion. I think a big part of his success is tied to Jonathan. I kept making a big show of telling Jonathan how big his brother was, using the potty and wearing underwear. Each time Jack went, I would show Jonathan and make a big deal. Once I forgot to praise Jackson in front of Jonathan and after using the bathroom, Jack said, "Mommy, tell him what I did!" I think he enjoyed impressing his little brother.
Jackson is still stuttering so I am taking him to a speech pathologist on Monday. Hopefully the stutter will still be there so she can tell us if it is a big deal or not. I don't think it is, since it comes and goes. However, we want to be sure and not ignore something that might be significant.
I am so grateful for how loving Jackson is with Jonathan. He wants to lie down by Jonathan constantly, help feed him (when I use a bottle:)), give him toys, kiss him, and show him how to do things. Jonathan reciprocates by smiling, laughing, and talking. It is so neat to watch.
We are rarely feeding Jonathan breastmilk with bottles. There is no need to document how much milk he is getting now that he is gaining weight. He is only nursing unless we are out running errands, at church, etc. The pediatrician and dietician are impressed with his weight gain on breastmilk alone. He is developing well considering he had open heart surgery less than two months ago.
Jonathan's scar continues to heal beautifully. Before I went to Columbia last week, Jamie kept insisting one place was not healing correctly. There was a white scab - it looked like a thick piece of skin that was not fully healed. I said it was a scab and not to worry about it. The pediatrician agreed with me. Jamie was bathing Jonathan one night and kept playing with that piece of skin. Finally, something popped through - it looked like fishing line. It was a souture that was irritating the skin just below the scab. Jamie had been right all along - the souture was irritating the skin and needed to be clipped. I called the cardiologist's office and spoke with a nurse. She walked me through the process and said I could do it. I opted not to. I figured if I could, the pediatrician could. I did not want to take chances on causing some kind of infection because I didn't sterilize something enough. I took Jonathan in and the pediatrician pulled the souture as tightly as she could and clipped it as closely to the skin as possible. Jackson saw what was going to happen, heard Jonathan whine, and said, "I'm worried!" The doctor said, "Do you want a sucker?" That calmed him down.:) The child is definitely my son - he finds immediate comfort in food! Since Jamie freed up the souture, it looked less red. It looks even better now that it has been clipped.
Yesterday we went to the Bell Center. Jonathan is rolling from his tummy to his back. With very little help, he rolled from his back to his tummy. He is holding his head up high while on his tummy - great considering all the work done on his chest. He is chattering like crazy, batting his arms, kicking his legs, scooting across the floor in an attempt to crawl, and so much more. I am simply grateful for these things! They give me hope.
We are functioning - we have bad days and good days. For the most part, we are faring well. We love our boys. We still would not have picked this situation. Please pray for us. Pray for Jackson's stutter, Jonathan's weight gain and development, and our outlook on the future. I want to be the parent that is positive and that the DS is a component of our family but is not who we are.
I will post pictures later!
Julie
Monday, March 27, 2006
Update
Hello! It has been more than three weeks since my last post. I think I became complacent once Jonathan's surgery was over and he seemed to be in the clear.
Thanks to so many of you, again, for your prayers. I was at home in Columbia this weekend and was able to see many people in my hometown neighborhood and at church. It had been seven months since I last visited and I was overwhelmed with the number of people who said they had been praying for us.
To update you, Jonathan is doing great. He is rolling from his tummy to his back, holding his head up, trying to sit, can track objects, batting at things, holding toys, trying to crawl, loves to eat, and is sleeping all night. Jackson still cannot get enough of his little brother and I am so thankful for that! He is such an example to me of how to love - unconditionally.
I tried to post some photos but was unable to so I will try again soon.
Julie
Thanks to so many of you, again, for your prayers. I was at home in Columbia this weekend and was able to see many people in my hometown neighborhood and at church. It had been seven months since I last visited and I was overwhelmed with the number of people who said they had been praying for us.
To update you, Jonathan is doing great. He is rolling from his tummy to his back, holding his head up, trying to sit, can track objects, batting at things, holding toys, trying to crawl, loves to eat, and is sleeping all night. Jackson still cannot get enough of his little brother and I am so thankful for that! He is such an example to me of how to love - unconditionally.
I tried to post some photos but was unable to so I will try again soon.
Julie
Monday, March 06, 2006
Pictures
Hello, everyone. I thought I would attach some pictures. Some could be termed as "gross" so just know I warned you! I hope they turn out okay - I have had a hard time figuring out how to put them in next to the correct descriptions.
Jamie and I attended the Guild Gala this weekend. We went to dinner at a couples' home where they honored Jonathan. It was so nice and we were thrilled. Our dinner was Russian-themed. After dinner we went to the ball and saw many familiar faces. I have not dressed up like that in so long! Jamie and I agreed we ought to do that more than once a year. Thanks to Bill and Suzanne for babysitting the boys so we could go!
We are doing well. Jonathan is hard to resist and makes it easier to accept. He is eating more than ever. He is laughing out loud without being tickled. He smiles all the time - especiallly when he takes a bath or gets his diaper changed. The boy likes to be clean!
Jackson still stutters on occasion but nothing like before. Thank you for your prayers.
This is what Jonathan's chest looked like right after the surgery. I was giving him a bath. The two holes on the bottom left and furthest to the right are where tubes went in to get to his heart. The cut below his incision is where a drain tube was. You can kind of see the staples on his actual incision.
Jackson and Jonathan in their PJs. Jackson just loves Jonathan so much. He always asks where "Baby Jonathan" is and wants to kiss his hands and head. I have to work to keep him off of Jonathan. He is so loving and affectionate! He is very proud of Jonathan and I cannot think of a better big brother. I am so thankful Jackson loves his little brother so much.
Jackson commiserating with Jonathan. He has his own "scar," too! You can tell that Jonathan's skin has not really seen the light of day yet.:) I thought it would be fun to give Jackson some "scar" treatment. He was thrilled. At first he was scared when I mentioned it, but then he thought it was neat.
This is Jonathan a few days ago. Amazing how this child is healing up so quickly!
Jamie and I attended the Guild Gala this weekend. We went to dinner at a couples' home where they honored Jonathan. It was so nice and we were thrilled. Our dinner was Russian-themed. After dinner we went to the ball and saw many familiar faces. I have not dressed up like that in so long! Jamie and I agreed we ought to do that more than once a year. Thanks to Bill and Suzanne for babysitting the boys so we could go!
We are doing well. Jonathan is hard to resist and makes it easier to accept. He is eating more than ever. He is laughing out loud without being tickled. He smiles all the time - especiallly when he takes a bath or gets his diaper changed. The boy likes to be clean!
Jackson still stutters on occasion but nothing like before. Thank you for your prayers.
This is what Jonathan's chest looked like right after the surgery. I was giving him a bath. The two holes on the bottom left and furthest to the right are where tubes went in to get to his heart. The cut below his incision is where a drain tube was. You can kind of see the staples on his actual incision.
Jackson and Jonathan in their PJs. Jackson just loves Jonathan so much. He always asks where "Baby Jonathan" is and wants to kiss his hands and head. I have to work to keep him off of Jonathan. He is so loving and affectionate! He is very proud of Jonathan and I cannot think of a better big brother. I am so thankful Jackson loves his little brother so much.
Jackson commiserating with Jonathan. He has his own "scar," too! You can tell that Jonathan's skin has not really seen the light of day yet.:) I thought it would be fun to give Jackson some "scar" treatment. He was thrilled. At first he was scared when I mentioned it, but then he thought it was neat.
This is Jonathan a few days ago. Amazing how this child is healing up so quickly!
Friday, March 03, 2006
No More Staples!
Jamie and I took Jonathan to the cardiologist on Wednesday. Without his diaper, he weighed nine pounds, 11.6 ounces! The fluid is still gone around his heart so we were allowed to take him off his diuretic. The doctor was pleased with his progress - level of activity, weight gain, alertness, etc. That is twice we have left the cardiologist's office with good news!
When Jonathan first came home, we were giving him meds three times a day (five in the morning, one in the afternoon, and four in the evening). We had a rubric to keep it all straight. Now, we are simply giving him one-fourth of an aspirin daily to prevent blood clots. Oh, it is so much easier! Not only that, but now his chest is stapleless! The doctor used a staple remover and just popped them out. I think it pinched close to the top because Jonathan howled for quite some time after "the event."
I will post pictures later. I tried to tonight but was unable to upload.
Julie
When Jonathan first came home, we were giving him meds three times a day (five in the morning, one in the afternoon, and four in the evening). We had a rubric to keep it all straight. Now, we are simply giving him one-fourth of an aspirin daily to prevent blood clots. Oh, it is so much easier! Not only that, but now his chest is stapleless! The doctor used a staple remover and just popped them out. I think it pinched close to the top because Jonathan howled for quite some time after "the event."
I will post pictures later. I tried to tonight but was unable to upload.
Julie
Tuesday, February 28, 2006
Laughter Is the Best Medicine
Thank you so much for your prayers. You all must have been praying for Jackson. I had an appointment scheduled for him on Monday to see a speech pathologist. Over the weekend, the stutter all but vanished and so I was able to cancel the appointment. Thank you all for praying and praise God! Frankly, I did not fear being a couple with two kids with special needs. It was simply that I did not want to cause Jackson to start stuttering because I did not handle our circumstances well. It may have helped that last week was the most normal week we have had since Jonathan's birth.
Jonathan is doing very well. We go to the cardiologist tomorrow for a check up and to have his staples removed. Some people who have seen us have asked if Jonathan has gotten his staples removed yet. Jamie looks them dead in the eye and says, "Oh, I already took them out with my needle-nosed pliers. It didn't hurt him at all!" You can see this look of horror and incredulity cross their faces until he starts laughing. :) We are definitely on the up and up - we are laughing more and more. That is definitely a good sign. For a while there I thought I may never laugh again and if I did, it would be wrong.
I took Jonathan to the Bell Center today. He did well and I have things to work on with him at home. I asked to weigh him. With just a fresh diaper on, he weighed in at nine pounds, thirteen ounces. I think this may be more than when he went in for surgery! Yeah! He is eating like a champ. For those of you who have breastfed your kids, you probably have no idea how much they consumed at each feeding. Right now I pump and give it to him in a bottle so we can keep tabs on how much he is consuming. Before the surgery, he would max out at around 550 mL or so. He might hit in the 600s every so often. Now he is in the 700s and is inhaling the milk. It is so wonderful to watch and to listen to that noisy snorting as he eats! AAAHH! What a wonderful sound. He eats like he did before but now we know it is staying on his body rather than burning up immediately upon consumption.
Jamie and I were on the phone one day last week. He was with someone who was taking pictures for a project. Jamie wanted the guy to take the pictures differently but the guy was not open to suggestions. As Jamie was telling me this, I interrupted and said, "Is the guy still there?" Jamie said, "Yeah, he's here." I said, "Did he hear what you just told me?" He said, "Yeah, he heard me." Then he said, "Yeah, I'm talking about you! I don't like the pictures you're taking. Why can't you take some from a different angle? I am paying you good money and would like you to take some of my suggestions. I don't care what has worked before!" I started to shrink inside myself and could not believe he was talking like that to anyone. Then I realized that was just it. He would not talk to anyone like that. At least, I hoped he wouldn't. I started to laugh slowly, hoping it was a joke. Jamie got back on the phone and distractedly said, "Honey, I've got to go and take care of this." I still thought, "Surely not. Please don't let this be real" and continued to laugh, hoping he would start laughing, too. He started laughing and said, "Gotcha!" I cannot tell you how good it felt to laugh like we used to - I laughed to myself all day thinking about it. Thank goodness for humor!
I truly believe God will not protect me from harm just because I have been "good." I know He is in control but that all things happen within His plan. Please pray that I find the strength to continue to let go of my dreams and my will and to replace them with what He reveals His dreams and plans to be for me and our family. Pray that we continue to adjust. Pray for our health.
Thank you for your prayers, thoughts, encouragement, and friendship.
Julie
juliewarren@mindspring.com
Jonathan is doing very well. We go to the cardiologist tomorrow for a check up and to have his staples removed. Some people who have seen us have asked if Jonathan has gotten his staples removed yet. Jamie looks them dead in the eye and says, "Oh, I already took them out with my needle-nosed pliers. It didn't hurt him at all!" You can see this look of horror and incredulity cross their faces until he starts laughing. :) We are definitely on the up and up - we are laughing more and more. That is definitely a good sign. For a while there I thought I may never laugh again and if I did, it would be wrong.
I took Jonathan to the Bell Center today. He did well and I have things to work on with him at home. I asked to weigh him. With just a fresh diaper on, he weighed in at nine pounds, thirteen ounces. I think this may be more than when he went in for surgery! Yeah! He is eating like a champ. For those of you who have breastfed your kids, you probably have no idea how much they consumed at each feeding. Right now I pump and give it to him in a bottle so we can keep tabs on how much he is consuming. Before the surgery, he would max out at around 550 mL or so. He might hit in the 600s every so often. Now he is in the 700s and is inhaling the milk. It is so wonderful to watch and to listen to that noisy snorting as he eats! AAAHH! What a wonderful sound. He eats like he did before but now we know it is staying on his body rather than burning up immediately upon consumption.
Jamie and I were on the phone one day last week. He was with someone who was taking pictures for a project. Jamie wanted the guy to take the pictures differently but the guy was not open to suggestions. As Jamie was telling me this, I interrupted and said, "Is the guy still there?" Jamie said, "Yeah, he's here." I said, "Did he hear what you just told me?" He said, "Yeah, he heard me." Then he said, "Yeah, I'm talking about you! I don't like the pictures you're taking. Why can't you take some from a different angle? I am paying you good money and would like you to take some of my suggestions. I don't care what has worked before!" I started to shrink inside myself and could not believe he was talking like that to anyone. Then I realized that was just it. He would not talk to anyone like that. At least, I hoped he wouldn't. I started to laugh slowly, hoping it was a joke. Jamie got back on the phone and distractedly said, "Honey, I've got to go and take care of this." I still thought, "Surely not. Please don't let this be real" and continued to laugh, hoping he would start laughing, too. He started laughing and said, "Gotcha!" I cannot tell you how good it felt to laugh like we used to - I laughed to myself all day thinking about it. Thank goodness for humor!
I truly believe God will not protect me from harm just because I have been "good." I know He is in control but that all things happen within His plan. Please pray that I find the strength to continue to let go of my dreams and my will and to replace them with what He reveals His dreams and plans to be for me and our family. Pray that we continue to adjust. Pray for our health.
Thank you for your prayers, thoughts, encouragement, and friendship.
Julie
juliewarren@mindspring.com
Friday, February 24, 2006
As usual, thanks to all of you for your prayers, emails, phone calls, notes in the mail, and gifts. We could not survive this if it were not for you and your encouragement. The Lord has really provided comfort through each of you.
When we brought Jonathan home last week, it was reminiscent of our time coming home from the NICU - scared that he was coming home too early. His breathing was still fast, he was on five different medications that we had to administer in some combination three times a day, and his congestion was more than with which we were comfortable.
Now, Jonathan's skin looks great, he is so happy (except when hungry or tired), his breathing has slowed down considerably (Jamie timed it last week at 60 breaths a minute compared to 37 breaths a minute now), he is talking a TON, he is smiling a bunch, and his congestion is minimal if not nonexistent.
I had another scary episode the other day. Jackson actually was playing with Jonathan while Jonathan was strapped in the swing and I was watching. He lost his balance and leaned on Jonathan - smack in the middle of Jonathan's chest. I was rather upset and checked Jonathan's staples and was scared to see his chest contorting a tad. I called the cardiologist's nurse line (for the tenth time). She told me to calm down (I was in tears) and not to worry. If the chest bone had repositioned, they could not do anything anyway. Luckily, Jamie had noticed the same thing the previous day. DS kids' chests tend to heal with bumps because of an excess of bone at the place of trauma. I had not yet noticed it and Jamie had. Thank goodness - otherwise we would have assumed it was my fault.
A sweet incident was when Jonathan cried the other day. Jackson found a pacifier and promptly stuck it in Jonathan's mouth and kept it there until Jonathan took it, Jackson softly crooning to him. It was so sweet - I got it on tape if you want to see it!
Jackson started stuttering even worse last week. He could barely complete a sentence. I got in touch with a speech pathologist this week. She will evaluate him next week. I am no speech pathologist but I do think this is all related to our stressful circumstances. In fact, it got worse when Jonathan went in to surgery and was in the hospital. I am hoping that now that our lives are beginning to be more in a routine, he will relax. I will be really hacked if he develops something as a result of all this - we have enough on our plates and I hate that he is an innocent victim in it.
Thanks to each one of you for your interest in our story. We appreciate you and your prayers!
Julie:)
juliewarren@mindspring.com
When we brought Jonathan home last week, it was reminiscent of our time coming home from the NICU - scared that he was coming home too early. His breathing was still fast, he was on five different medications that we had to administer in some combination three times a day, and his congestion was more than with which we were comfortable.
Now, Jonathan's skin looks great, he is so happy (except when hungry or tired), his breathing has slowed down considerably (Jamie timed it last week at 60 breaths a minute compared to 37 breaths a minute now), he is talking a TON, he is smiling a bunch, and his congestion is minimal if not nonexistent.
I had another scary episode the other day. Jackson actually was playing with Jonathan while Jonathan was strapped in the swing and I was watching. He lost his balance and leaned on Jonathan - smack in the middle of Jonathan's chest. I was rather upset and checked Jonathan's staples and was scared to see his chest contorting a tad. I called the cardiologist's nurse line (for the tenth time). She told me to calm down (I was in tears) and not to worry. If the chest bone had repositioned, they could not do anything anyway. Luckily, Jamie had noticed the same thing the previous day. DS kids' chests tend to heal with bumps because of an excess of bone at the place of trauma. I had not yet noticed it and Jamie had. Thank goodness - otherwise we would have assumed it was my fault.
A sweet incident was when Jonathan cried the other day. Jackson found a pacifier and promptly stuck it in Jonathan's mouth and kept it there until Jonathan took it, Jackson softly crooning to him. It was so sweet - I got it on tape if you want to see it!
Jackson started stuttering even worse last week. He could barely complete a sentence. I got in touch with a speech pathologist this week. She will evaluate him next week. I am no speech pathologist but I do think this is all related to our stressful circumstances. In fact, it got worse when Jonathan went in to surgery and was in the hospital. I am hoping that now that our lives are beginning to be more in a routine, he will relax. I will be really hacked if he develops something as a result of all this - we have enough on our plates and I hate that he is an innocent victim in it.
Thanks to each one of you for your interest in our story. We appreciate you and your prayers!
Julie:)
juliewarren@mindspring.com
Thursday, February 16, 2006
Jonathan came home from the hospital on Friday afternoon. Jamie's parents kept Jackson that night so we could settle in with Jonathan. That proved to be a wise choice. I was feeling scared and needed time to adjust - how I should hold him, how I should feed him (try breastfeeding or keep with the bottle), if he would be sore, etc.
Jamie's parents spent Saturday night with us so we could get up and go to the Marathon Sunday morning kid-free. Alas, it was not to be so.
We had a laundry list of symptoms to watch for in the event Jonathan started to do poorly - puffy eyes, swollen feet, fever, agitation, poor appetite, trouble breathing, etc. Saturday night Jamie was concerned about Jonathan's rate of breathing. He started timing Jonathan's respirations - they were at 60 per minute. Jamie called the doctor and the doctor said it was okay. Jonathan's breathing became more gravelly and raspy as the night wore on and Jamie called again. The doctor said we could come in and have an echocardiogram done Sunday morning. We decided that we would take two cars. Jamie would follow me. I would leave my car at the point I would pass off the timing device in the relay exchange. Jamie drove me to where I would pick up the timing device and begin my run. Jamie left me around 8am to go see the doctor. Jonathan had a third echo done and it showed his lungs retaining the same amount of fluid as before. The doctor was comfortable with this and we had more peace of mind. I was just scared that he had gotten through the big surgery and then something terrible might happen simply because we ignored a symptom we should not have. Never was it more true to say "Better safe than sorry."
The WAKM relay team raced well. Stacy ran first. William ran second. I ran after William. Steven took the fourth leg and Josh ran the last seven miles. We all met him near the last half mile and ran in together (I suppose "together" is relative. Josh took off and Steven stayed with him. The rest of us followed as best we could!") I was simply thrilled to be a part - doing something concrete for my child. I was so glad that I was able to complete my portion of the race without mishap. Thank goodness! I was not really worried. I just wondered how I might feel. I was tired but that was about it.
We can never thank all of you enough for your help. Some of you brought us meals or gave blood for Jonathan's surgery. Others have been prayer warriors. Thanks to those of you who have sent us anonymous cards in the mail - how sweet and helpful! Thanks to those who ran in the race or donated to the Bell Center. We can never repay you but we will pay it forward, as Jamie says. We will make certain that we pass on your legacy of giving.
Right now, Jonathan's lungs are still acclimating to his heart. This has caused congestion. His lungs are secreting fluid in reaction to all that has gone on. At first, Jonathan's body was retaining the fluid in his right lung. On Tuesday, the doctor said that his lungs were clear. Yeah!
Although Jonathan's lungs are relatively clear, he is still coughing. He probably has mucus and other gunk in his lungs that have yet to be cleaned out. He is not wanting to eat either. This puzzled me because he was such a great eater before. We think his throat must be raw from being intubated, from acid when he gags up his awful tasting meds (potassium chloride specifically), and from coughing.
He is napping twice a day and sleeping nine hours at night (not every night but close to it). He is smiling and talking again (he did not while he was in the hospital). He seems glad to be at home. Jack is glad he is here, too. Jack kept inquiring about him. We finally took him to the hospital waiting room and explained that Jonathan was there but we could not see him because the doctors were fixing his heart. That pacified him. Seeing friends and family in the waiting area seemed to answer questions as to where everyone had been going without him.
Watching Jonathan heal is like watching that liquid nitrogen man from "The Terminator." Every time he got shot, the liquid nitrogen closed over the wound and you could not tell anything had been there. Jonathan does look like he has a zipper down his chest but the holes from the drain tube, the tubes going to his heart, and the central line are all closing up nicely. The tape from all the tubing left marks almost like sunburns all over his abdomen. The blankets from the hospital made it worse. Slowly but surely his skin is healing and there is just a ghost of a layer of that damaged skin left behind.
This little guy has been through so much in the first three months of his life and has been such a trooper. He has hardly cried and smiles through it all. We just love him so much. We feel doubly blessed. Our lives will be more challenging but there are no promises that life is easy. I fall into the lie that I deserve an easy life because I have been "good." True peace and contentment is derived from true surrender. I am learning to surrender to the Lord. I don't always want to do it or like doing it because I feel like I am giving in to an unjust situation. However, I don't just want to survive this life - I want to LIVE it and live it abundantly like Christ promised. I can have abundant life if I just let go. Hang on and be bitter about life being unfair. Let go and live an abundant life. Hhmmm... I think I will go with the latter.
Julie
juliewarren@mindspring.com
Jamie's parents spent Saturday night with us so we could get up and go to the Marathon Sunday morning kid-free. Alas, it was not to be so.
We had a laundry list of symptoms to watch for in the event Jonathan started to do poorly - puffy eyes, swollen feet, fever, agitation, poor appetite, trouble breathing, etc. Saturday night Jamie was concerned about Jonathan's rate of breathing. He started timing Jonathan's respirations - they were at 60 per minute. Jamie called the doctor and the doctor said it was okay. Jonathan's breathing became more gravelly and raspy as the night wore on and Jamie called again. The doctor said we could come in and have an echocardiogram done Sunday morning. We decided that we would take two cars. Jamie would follow me. I would leave my car at the point I would pass off the timing device in the relay exchange. Jamie drove me to where I would pick up the timing device and begin my run. Jamie left me around 8am to go see the doctor. Jonathan had a third echo done and it showed his lungs retaining the same amount of fluid as before. The doctor was comfortable with this and we had more peace of mind. I was just scared that he had gotten through the big surgery and then something terrible might happen simply because we ignored a symptom we should not have. Never was it more true to say "Better safe than sorry."
The WAKM relay team raced well. Stacy ran first. William ran second. I ran after William. Steven took the fourth leg and Josh ran the last seven miles. We all met him near the last half mile and ran in together (I suppose "together" is relative. Josh took off and Steven stayed with him. The rest of us followed as best we could!") I was simply thrilled to be a part - doing something concrete for my child. I was so glad that I was able to complete my portion of the race without mishap. Thank goodness! I was not really worried. I just wondered how I might feel. I was tired but that was about it.
We can never thank all of you enough for your help. Some of you brought us meals or gave blood for Jonathan's surgery. Others have been prayer warriors. Thanks to those of you who have sent us anonymous cards in the mail - how sweet and helpful! Thanks to those who ran in the race or donated to the Bell Center. We can never repay you but we will pay it forward, as Jamie says. We will make certain that we pass on your legacy of giving.
Right now, Jonathan's lungs are still acclimating to his heart. This has caused congestion. His lungs are secreting fluid in reaction to all that has gone on. At first, Jonathan's body was retaining the fluid in his right lung. On Tuesday, the doctor said that his lungs were clear. Yeah!
Although Jonathan's lungs are relatively clear, he is still coughing. He probably has mucus and other gunk in his lungs that have yet to be cleaned out. He is not wanting to eat either. This puzzled me because he was such a great eater before. We think his throat must be raw from being intubated, from acid when he gags up his awful tasting meds (potassium chloride specifically), and from coughing.
He is napping twice a day and sleeping nine hours at night (not every night but close to it). He is smiling and talking again (he did not while he was in the hospital). He seems glad to be at home. Jack is glad he is here, too. Jack kept inquiring about him. We finally took him to the hospital waiting room and explained that Jonathan was there but we could not see him because the doctors were fixing his heart. That pacified him. Seeing friends and family in the waiting area seemed to answer questions as to where everyone had been going without him.
Watching Jonathan heal is like watching that liquid nitrogen man from "The Terminator." Every time he got shot, the liquid nitrogen closed over the wound and you could not tell anything had been there. Jonathan does look like he has a zipper down his chest but the holes from the drain tube, the tubes going to his heart, and the central line are all closing up nicely. The tape from all the tubing left marks almost like sunburns all over his abdomen. The blankets from the hospital made it worse. Slowly but surely his skin is healing and there is just a ghost of a layer of that damaged skin left behind.
This little guy has been through so much in the first three months of his life and has been such a trooper. He has hardly cried and smiles through it all. We just love him so much. We feel doubly blessed. Our lives will be more challenging but there are no promises that life is easy. I fall into the lie that I deserve an easy life because I have been "good." True peace and contentment is derived from true surrender. I am learning to surrender to the Lord. I don't always want to do it or like doing it because I feel like I am giving in to an unjust situation. However, I don't just want to survive this life - I want to LIVE it and live it abundantly like Christ promised. I can have abundant life if I just let go. Hang on and be bitter about life being unfair. Let go and live an abundant life. Hhmmm... I think I will go with the latter.
Julie
juliewarren@mindspring.com
Saturday, February 11, 2006
Home from the Hospital
It amazes me that a short 4 days ago, our little boy's heart was stopped...being repaired, and now we're home. The miracle of modern medicine is something that I will never again take for granted. We're so fourtnate that we live in the U.S.--first and foremost. We're also blessed to live in one of the most advanced medical cities--Birmingham. I made a career decision to keep us here 2.5 years ago. Had I gone the other way, we'd have gone through this alone and at distance from our families.This experience has been surreal. I caught myself several times comprehending that our child 
had open heart surgery. I honestly pictured such challenges as some far off thing that other families had to deal with--almost like it was something they brought on themselves. I guess I have been judgmental (for some weird reason). I was wrong to ever think that.
had open heart surgery. I honestly pictured such challenges as some far off thing that other families had to deal with--almost like it was something they brought on themselves. I guess I have been judgmental (for some weird reason). I was wrong to ever think that. These scary experiences really are a way for God to show his glory. I have fought those type of situations in my life--because they are often painful and unwelcomed. When YOU set a goal and the process is painful (for example, training for a marathon), often you have a big payoff at the end. If you finish the race, all the pain is worth it. I get that. I do that.
What I haven't got for a long time is that God does the same thing. The pain (like in physical 
training) does things for you that you can't see. And, the payoff isn't about you at all. It's bringing you closer to the one who started this for you. The "goal" is intangible and not at all "performance" oriented--like finishing the marathon. Seeing that such experiences can have big payoffs is a paradigm shift for me. It's the kind of payoff I could never conceive. It's the ultimate in letting go of control. I have grown to trust God more the last 3 months. Even though he gave us a child with a condition I didn't want--I trust him. He has shown his might and power in amazing ways that I wouldn't have seen otherwise.
training) does things for you that you can't see. And, the payoff isn't about you at all. It's bringing you closer to the one who started this for you. The "goal" is intangible and not at all "performance" oriented--like finishing the marathon. Seeing that such experiences can have big payoffs is a paradigm shift for me. It's the kind of payoff I could never conceive. It's the ultimate in letting go of control. I have grown to trust God more the last 3 months. Even though he gave us a child with a condition I didn't want--I trust him. He has shown his might and power in amazing ways that I wouldn't have seen otherwise. David, a high school friend of mine, reminded me recently that if you believe that God's good in all things, then you have to believe it FULLY. So, in the pain and in the joy, God's good. I'm starting to understand this better.
I also get sense of what can happen when God's people pray. We'll never know how many people have prayed for us this week. There are literally hundreds--if not in the thousands of you that have lifted us up. Churches in different states that have had us on prayer lists. Your prayers ultimately brought upon God's will. They were answered with resounding "yeses." I'm relieved and thrilled that our son has made it through this big hurdle. But, the strange thing is that I get the sense that God would have been just as present if all this hadn't gone so well.
I covet your prayers of intercession for the next 6 weeks. There are serious risks that Jonathan has. We've got to watch fluid build up and his breathing vigilantly. His breastbone is broken from the procedure. It's wired shut, but we've got to be very careful. An interesting note, he has 27 staples closing this incision on his chest. I find it fascinating--not upsetting. If you're interested, email me. I'll send you a picture now. Otherwise, I'll wait to post pictures of that until it heals up some more.
Sue, Julie's mom, went home yesterday. All of you should call her 'St. Sue'. She was wonderful--basically ran our house this week. I will never be able to thank her enough for her love and help. She did the same thing when Jonathan and Jackson were born. Thank you, Sue. You being here was a balm for Julie and I.
I'll continue to post updates and thoughts. This picture below is from this morning... at home after his 'breakfast'.Jamie
Thursday, February 09, 2006
Moved Out of CICU
Last night around 5pm, Jonathan was moved into our room on the 5th floor at UAB. Dr. Pacifico reports that he's doing "Super." This is a huge move. He was only in CICU for about 30 hours. Julie went home to be with Jackson and her mom, Sue. My mom stayed with me and Jonathan. We got some good time together. He's eating again (milk) and seemed to be livening up. I got the first look at the incision. About 26 staples and much shorter than expected. It was really interesting.The spot where his chest tubes were bleeding a bit, but this morning it's under control. His central line is the only thing still stuck in him. The nasal cannula will come out as soon as his oxygen saturation levels level out above 90 -- they're high 80's without the supplemental O2 right now. I held him for about 3 hours last night. It felt good.
Julie didn't sleep much last night, so please pray that she gets some rest today. Sue's with her at the hospital. I'm trying to get some work done. Also, please continue to pray for Jonathan's lungs to relax. All of your support is amazing.
Jamie
Wednesday, February 08, 2006
First Post Surgery Pic
He's swollen and groggy, but awake enough to give the "power fist" to everyone in this picture. Jonathan's breathing tube came out this morning. His CO2 levels shot up for a while, but some meds brought them back in line. He had a bit of stridor (tightening of the trachea) when they took it out. A breathing treatment helped with that. That was the only concerning thing this AM so far. But it's resolved for now. One of the direct pressure leads in his heart was removed, too. Some bleeding there, but they gave him some blood to replace what he lost.
He'll be in the CICU all day today. Maybe one more night. We'll know more after Dr. Pacifico's rounds. Keep praying for clear, relaxed lungs.
Jamie
More Progress
I saw Jonathan tonight at 9 PM. He was awake long enough for me to talk to him. He grabbed my finger and squeezed it when I spoke to him. The vent tube removal is scheduled for 4 or 5 AM this morning. If he can breathe well on his own, he should be out of the CICU by Wednesday night.Keep praying for his little lungs to relax. The doctor and nurses are pleased that he's doing well. More posts Wednesday AM - probably around 10 AM.
Jamie
Tuesday, February 07, 2006
"According to Plan..."
These are the exact words of Dr. Pacifico. Things went well today with Jonathan's recovery. We're still not out of the woods yet, but he's very pleased with the repair and the slow, steady progress he's making. You can see how much equipment is involved.
We got to see Jonathan around 10:45 AM. He's off the pacemaker. I can't tell you how great it is to see his heart beating kowing that it's working how it should be have been all along. Jonathan looked much better than Julie and I had been prepared for. He's a bit swollen, but his color's good.
The main risk at this point is the lungs and vessels not adapting to the new pressures (albeit the correct ones). If you've followed Jonathan's story, you know that oxygen saturation was a metric we mentioned often in the NICU. Pulmonary artery pressure is what we're watching now. We need Jonathan's lungs to relax and not tighten. A major constriction event could be life threatening. There are drugs to help mititgate this likelihood, but drugs can only do so much. The good news is that tonight, he's come off the medication to fight that. It's a good sign.
We only get to visit him 5x per day/ 20 minutes each tim in the CICU. My folks stuck around so we could come home for a nap and dinner. I'm headed back in a few minutes to see him at 9 PM.
Please pray for his little lungs to relax and adjust. Your prayers are being answered with "yeses". Thank you all so much. Enjoy the pics from today.
Jamie
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