Ever have the problem deciding what to eat? We usually resort to "You pick two, I'll decide." I use that often with Joel. I thought that I noticed he would always pick the item I mentioned last; red or blue, cheeseburger or chicken, ice cream or cookies. The answers would be blue, chicken, cookies. So I started saying the one I really wanted last. Today it was "Joel would you like to eat Krystals or Wendy's." Knowing I was looking forward to Wendy's only because they have $0.99 kids meals right now. If you have bought a kids meal recently you know how expensive they are. Who am I kidding though eating out at all is way too expensive. Anyway, Joel's answer: "Burger King." Seriously. So off we went.
It is good to have someone to make the decisions. Atleast for now anyway. If there comes a point when it is always the same thing or there are fits associated with not getting what he wants, then we will have an issue. But for now, Burger King it is.
Update on Joel's back:
Physical therapist seems to think that one of his legs is a tiny bit shorter than the other causing him to keep weight on one side making his back appear curved on x-ray. She said he felt really flexible in his back which was a good thing and put a thin piece of foam in his shoe to see if that would make any difference.
Wednesday, May 20, 2009
Thursday, May 14, 2009
Joel's Ortho Apt 5/13/09
We had a rough start to the morning, including me finding Joel had decided to completely undress while I was in the shower. But he was so proud to announce that he was aware of his bodily functions. While I too share the joy that he is able to know when he is going, the fact that he was giving a shower to the living room carpet didn't please me near as much....
Fast forward through the cleaning and redressing. We made it to the doctor. He had to have 2 x-rays, one of his hips and one of his back. This time they actually gave me the x-rays to carry back to the office. What would anyone do with x-rays? Look at them! I looked and even though most of the x-rays I've seen has been limited to Grey's Anatomy (I'm ashamed to admit, I watch) and my time as a emt and er volunteer, I could tell we were going to have issues to discuss today with the doctor. The spine was curved.
The doctor suspected it at our last visits but wanted to have an x-ray taken with Joel standing instead of laying to see better, and with the x-ray in front of my face there was no denying it. Our new diagnosis to add to Spina Bifida, Arnold Chari Malformation, and Hydrocelephus is Scoliosis. There are a few other things that have been mentioned, but I refuse to add them until there is no doubt. Now we are left with no real answers as to how bad it will be or what course of action will be best. Dr. Moses ("My name is Moses, but I'm no profit") said nothing has been proven to help. Some people exercise and get better, some people brace and get better, but some people get better by doing nothing. "So," he said, "There is no way to know if it was the brace, exercise, or just the touch of God." I'm so glad to have a doctor for Joel that understands God is in control. Infact with some troubles alone the way and a couple of doctor changes, I'm happy with all of Joel's doctors.
So what do we do now? We pray. I cry myself to sleep because I wonder if I'm even worthy of having another prayer answered because He has answered so many on my behalf already. I wish I could say this is the last thing I'm going to need, so just answer this and I'll be good, but it isn't true. Life is a daily struggle and I never know what problem will present itself. Yes, Joel is doing wonderful if you look from the outside. But if you are in my life and seeing it from the inside, there is always something to deal with. I belittle the real seriousness of the issues, I guess, because I always am grateful that it isn't worse. So today when I cry with a broken heart because I don't even have words to pray and because I have been praying a prayer for God to bless me with something I want instead of thanking God for what He has blessed me with and praying for His loving touch on Joel, I remind myself God does care. He cares more than I know. He understands. He answers prayers.
Fast forward through the cleaning and redressing. We made it to the doctor. He had to have 2 x-rays, one of his hips and one of his back. This time they actually gave me the x-rays to carry back to the office. What would anyone do with x-rays? Look at them! I looked and even though most of the x-rays I've seen has been limited to Grey's Anatomy (I'm ashamed to admit, I watch) and my time as a emt and er volunteer, I could tell we were going to have issues to discuss today with the doctor. The spine was curved.
The doctor suspected it at our last visits but wanted to have an x-ray taken with Joel standing instead of laying to see better, and with the x-ray in front of my face there was no denying it. Our new diagnosis to add to Spina Bifida, Arnold Chari Malformation, and Hydrocelephus is Scoliosis. There are a few other things that have been mentioned, but I refuse to add them until there is no doubt. Now we are left with no real answers as to how bad it will be or what course of action will be best. Dr. Moses ("My name is Moses, but I'm no profit") said nothing has been proven to help. Some people exercise and get better, some people brace and get better, but some people get better by doing nothing. "So," he said, "There is no way to know if it was the brace, exercise, or just the touch of God." I'm so glad to have a doctor for Joel that understands God is in control. Infact with some troubles alone the way and a couple of doctor changes, I'm happy with all of Joel's doctors.
So what do we do now? We pray. I cry myself to sleep because I wonder if I'm even worthy of having another prayer answered because He has answered so many on my behalf already. I wish I could say this is the last thing I'm going to need, so just answer this and I'll be good, but it isn't true. Life is a daily struggle and I never know what problem will present itself. Yes, Joel is doing wonderful if you look from the outside. But if you are in my life and seeing it from the inside, there is always something to deal with. I belittle the real seriousness of the issues, I guess, because I always am grateful that it isn't worse. So today when I cry with a broken heart because I don't even have words to pray and because I have been praying a prayer for God to bless me with something I want instead of thanking God for what He has blessed me with and praying for His loving touch on Joel, I remind myself God does care. He cares more than I know. He understands. He answers prayers.
Tuesday, April 28, 2009
Light in the Darkness
While Craig was preaching on Sunday he touched on something I wanted to share. (There was actually something else as well, but getting a pen out during the service is more interesting to a two and half year old so we just stick with books!)
When we are living in sin, we are living in darkness. Have you ever gotten in your car in a well lit parking lot at night only to get out on the main road away from all the bright lights to find you don't have your headlights on? You notice because without the other lights you are in the darkness. Immediately you turn on your lights, because to drive down the road at night with out lights is crazy.
I guess there are several ways to look at this. You have to have Jesus to have light and you should make sure your light shines. But I really wanted to point out how many church goers are surrounded by the "light" at church but apart from the others with "light" they are in darkness. When it comes down to it they haven't had a personal experience with Jesus, but they are none the wiser because they are just surrounded by the light. Now I realize that not all big churches are the same, but a lot of the mainstream big churches put off just enough light that they have many people fooled.
When we are living in sin, we are living in darkness. Have you ever gotten in your car in a well lit parking lot at night only to get out on the main road away from all the bright lights to find you don't have your headlights on? You notice because without the other lights you are in the darkness. Immediately you turn on your lights, because to drive down the road at night with out lights is crazy.
I guess there are several ways to look at this. You have to have Jesus to have light and you should make sure your light shines. But I really wanted to point out how many church goers are surrounded by the "light" at church but apart from the others with "light" they are in darkness. When it comes down to it they haven't had a personal experience with Jesus, but they are none the wiser because they are just surrounded by the light. Now I realize that not all big churches are the same, but a lot of the mainstream big churches put off just enough light that they have many people fooled.
Tuesday, April 21, 2009
While reading through some other blogs I came across this analogy. I really love how Jesus, Our High Priest, is described in handling our prayers. "He (the preacher) said it's just like when a little child brings his hand picked flowers to his mother. The mother picks out the weeds, adds some flowers of her own and puts them on display. We bring our prayers to Jesus, our High Priest, and He picks out the "weeds" and adds what He knows we needed to say, and presents our prayers to The Father. "
Isn't it the greatest feeling to know when you don't have the words, there is an intercessor!
Isn't it the greatest feeling to know when you don't have the words, there is an intercessor!
Joel's beginning
My son has Spina Bifida. God has really touched his life and he is a blessing everyone around him. To learn more about spina bifida visit http://www.sbaa.org/
After nearly two years of wanting to start a family, we finally found out we were expecting. On June 1st, 2006, my doctor called and said that my AFP test came back high risk for Neural Tube Defect. He said there was a 1 out of 11 chance that the baby had a problem and he had scheduled an appointment at with the high risk doctor on Tuesday June 6. He asked if I had any questions. I just repeated everything back to him to make sure I had it right. The last thing he said was remember there is still a 10 out of 11 chance that everything is perfectly fine. I really clung to those words for the next few days. Surely everything would be okay.
My husband and I showed up at the apt. Little did we know we would be spending lots of time in that waiting room on that day and in the months to come. First we met with a genetic counselor. She asked several questions and gave us some information. Then we had to go out to the waiting room again to wait for the nurse to call me back to gather her information. Then one more time back in the waiting room. Fianlly it was time to have the ultrasound. (We were also excited because today we would find out if we were having a boy or a girl.) The lady took lots of measurements and looked at every angle of our baby. We watched everything on the screen. Then she typed on the screen I'm a boy!! She left and told us the doctor would be in to review everything. The doctor came in and did his own ultrasound and measurements and then said something to the effect of there is a defect and all told us all the problems we would be facing. I don't remember exactly what he said my mind just started racing. I do remember that he then wanted to do an amnio to check the fluid and asked three times if we wanted to terminate the pregnancy. He told us he would give us a few minutes and come back to do the amnio and answer any questions we had. All we could do in that dim room was cry and pray.
The next 4 months were filled with doctor's appointments. People kept telling me I needed to research so I would be prepared. I didn't want to research. I didn't want to be going through this. If I did research it just made me more upset, because their wasn't really any answers to be found until our baby boy, who I had already named Joel, but his daddy wouldn't agree to any name yet, was born. To make matters worse I was sick all the time. Some days nothing would stay down. (Finally at 30 weeks I had my gallbladder removed. That was sure an answer to prayers because I felt like a different person and felt so much better.) Towards the end we had two doctors apts every week. At 36 weeks the high risk doctor (a different one than we saw the first visit, because we got smart and started asking to see a different doctor) did another amnio to see if Joel's (Daddy had still not agreed to the name) lungs were mature. He found merconium (baby bowel movement) in the amnio fluid and told me to go home, get a bag and come back because the baby would be born the next day. This was on top of the fact that I had been having contractions since right after the gallbladder surgery, was 3 cm dialated already, and the amnio triggerd strongger more regular contractions.
October 11, 2006 at 6:11 am Joel was born by c-section. (Daddy finally agreed to the name the night before! I prayed about the name and found that Joel meant strong willed or God's will. I knew that my baby would have to hav a strong will to make it and that we wanted God's will.) We heard him cry, I was able to give him a kiss and get a glance of his face, and then they wisked him away to the NICU. Later I asked if he was moving his legs at all, he was, but at that moment I wanted to just focus on the fact that he was finally here. I guess for old times sake I had to go through one more round of being sick and not being able to keep anything down, so it was six hours before I was well enough to make the jorney to the NICU to see my baby boy. We made that journey often over during the next four days while I was allowed to stay in the hospital and for 7 days after that. Joel spent a total of 11 days in the NICU.
On Friday October 13, 2006 Joel had his first surgery to close the opening on his back. It was hard taking him down to surgery but not as had for me as his next surgery. I knew he had to have the first surgery on his back. I could see the open wound. I knew that I would be able to hold him after the first surgery. The second surgery, to place a shunt to drain the fluid from his brain, when he was one week old was harder. I couldn't physically see any problems with him. He was my perfect little boy. I could hold him and feed him, infact I was feeding him when the neurosurgeon came it to tell us he was scheduling the second surgery. I knew another surgery meant longer in the hospital and more time that I wouldn't be able to hold him.
God was with us through every step of the way. We made it home and started getting into routine. Each week held atleast one doctor's apt for Joel. At his two month check up, we found that he had lost weight. Basically, I can look back now and see that he started choking while I was breastfeeding and he just stopped eating. (The choking and gagging is still an issue, but it is due to what they call arnold chari malformation.)
In October 2008, we had all the normal checks with his doctors when he turned two. Cardiologist (He was born with a heart murmur too, but that wasn't my biggest worry.) is marked off our list, the murmur is no longer an issue. Orthopedic dr. said everything looked good and we could stop using the inserts in his shoes when he out grows them. Urologist is still pleased with progress. Pediatrician thinks he is doing wonderful. Neurolgist said looks good see you in six months.
The day, we weren't sure we would see, the day he started walking happend in November 2008 with strange circumstances. He had to have surgery on October 31 to move the end of his shunt that is supposed to be in his abdomen area. The incision must have bothered him when he crawled so he started walking. Just like that.
Joel is now 2 and a half. My days are always filled with surprises. He is a blessing to our lives and I know God has great plans for his life.
After nearly two years of wanting to start a family, we finally found out we were expecting. On June 1st, 2006, my doctor called and said that my AFP test came back high risk for Neural Tube Defect. He said there was a 1 out of 11 chance that the baby had a problem and he had scheduled an appointment at with the high risk doctor on Tuesday June 6. He asked if I had any questions. I just repeated everything back to him to make sure I had it right. The last thing he said was remember there is still a 10 out of 11 chance that everything is perfectly fine. I really clung to those words for the next few days. Surely everything would be okay.
My husband and I showed up at the apt. Little did we know we would be spending lots of time in that waiting room on that day and in the months to come. First we met with a genetic counselor. She asked several questions and gave us some information. Then we had to go out to the waiting room again to wait for the nurse to call me back to gather her information. Then one more time back in the waiting room. Fianlly it was time to have the ultrasound. (We were also excited because today we would find out if we were having a boy or a girl.) The lady took lots of measurements and looked at every angle of our baby. We watched everything on the screen. Then she typed on the screen I'm a boy!! She left and told us the doctor would be in to review everything. The doctor came in and did his own ultrasound and measurements and then said something to the effect of there is a defect and all told us all the problems we would be facing. I don't remember exactly what he said my mind just started racing. I do remember that he then wanted to do an amnio to check the fluid and asked three times if we wanted to terminate the pregnancy. He told us he would give us a few minutes and come back to do the amnio and answer any questions we had. All we could do in that dim room was cry and pray.
The next 4 months were filled with doctor's appointments. People kept telling me I needed to research so I would be prepared. I didn't want to research. I didn't want to be going through this. If I did research it just made me more upset, because their wasn't really any answers to be found until our baby boy, who I had already named Joel, but his daddy wouldn't agree to any name yet, was born. To make matters worse I was sick all the time. Some days nothing would stay down. (Finally at 30 weeks I had my gallbladder removed. That was sure an answer to prayers because I felt like a different person and felt so much better.) Towards the end we had two doctors apts every week. At 36 weeks the high risk doctor (a different one than we saw the first visit, because we got smart and started asking to see a different doctor) did another amnio to see if Joel's (Daddy had still not agreed to the name) lungs were mature. He found merconium (baby bowel movement) in the amnio fluid and told me to go home, get a bag and come back because the baby would be born the next day. This was on top of the fact that I had been having contractions since right after the gallbladder surgery, was 3 cm dialated already, and the amnio triggerd strongger more regular contractions.
October 11, 2006 at 6:11 am Joel was born by c-section. (Daddy finally agreed to the name the night before! I prayed about the name and found that Joel meant strong willed or God's will. I knew that my baby would have to hav a strong will to make it and that we wanted God's will.) We heard him cry, I was able to give him a kiss and get a glance of his face, and then they wisked him away to the NICU. Later I asked if he was moving his legs at all, he was, but at that moment I wanted to just focus on the fact that he was finally here. I guess for old times sake I had to go through one more round of being sick and not being able to keep anything down, so it was six hours before I was well enough to make the jorney to the NICU to see my baby boy. We made that journey often over during the next four days while I was allowed to stay in the hospital and for 7 days after that. Joel spent a total of 11 days in the NICU.
On Friday October 13, 2006 Joel had his first surgery to close the opening on his back. It was hard taking him down to surgery but not as had for me as his next surgery. I knew he had to have the first surgery on his back. I could see the open wound. I knew that I would be able to hold him after the first surgery. The second surgery, to place a shunt to drain the fluid from his brain, when he was one week old was harder. I couldn't physically see any problems with him. He was my perfect little boy. I could hold him and feed him, infact I was feeding him when the neurosurgeon came it to tell us he was scheduling the second surgery. I knew another surgery meant longer in the hospital and more time that I wouldn't be able to hold him.
God was with us through every step of the way. We made it home and started getting into routine. Each week held atleast one doctor's apt for Joel. At his two month check up, we found that he had lost weight. Basically, I can look back now and see that he started choking while I was breastfeeding and he just stopped eating. (The choking and gagging is still an issue, but it is due to what they call arnold chari malformation.)
In October 2008, we had all the normal checks with his doctors when he turned two. Cardiologist (He was born with a heart murmur too, but that wasn't my biggest worry.) is marked off our list, the murmur is no longer an issue. Orthopedic dr. said everything looked good and we could stop using the inserts in his shoes when he out grows them. Urologist is still pleased with progress. Pediatrician thinks he is doing wonderful. Neurolgist said looks good see you in six months.
The day, we weren't sure we would see, the day he started walking happend in November 2008 with strange circumstances. He had to have surgery on October 31 to move the end of his shunt that is supposed to be in his abdomen area. The incision must have bothered him when he crawled so he started walking. Just like that.
Joel is now 2 and a half. My days are always filled with surprises. He is a blessing to our lives and I know God has great plans for his life.
First Post!
I thought about starting this a long time ago. I've never really put much work into it. Now we are just going to see how it goes!
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