Well, last Friday I decided that Jordan's cough had gone on long enough and she sounded soooo rattley - we were used to that sound from the time she was 2 weeks old until several weeks after she had her feeding tube put in and no longer ate orally. However, it was not something that I wanted to let go after a week of coughing and a low fever that jumped on Friday. So we took her in to the doc and she had an ear infection and an upper respiratory infection. He started her on Amoxicillin and we gave her first dose at her 5:30pm feeding.
Since it was Friday, it was pizza night!! After situating Jordan in her new Jumperoo - the best new toy for a busy little girl, we sat down on the couches and floor to watch some tv and enjoy our pizza. Jordan jumped like crazy for about 1/2 hr and then started fussing a little. I reached down between the front of the jumper and her belly to grab her pacifier to stick it back in and realized that the front of her was drenched!! I took her out and upstairs to change her clothes and put some dry gauze on. When we came back down, I decided not to put her back in the jumper since it seemed to cause her tube to leak. The kids and I played on the floor for about an hour until it was time to get ready for bed. I picked her up and realized that she was soaked again! I carried her upstairs and laid her down to take off the wet clothes and realized that she was now leaking bloody stomach contents - GROSS!!! I took off her clothes and gauze and looked at the tube site and there was a huge bubble of tissue coming out of it! I talked with Derrick and a few friends and decided that we needed to take a trip to the ER.
We headed in and our nurse, Jon was great!! He had fun interacting with Jordan while talking to me about what happened and checking out her belly. Since I had cleaned her up before coming in, there wasn't much to see other than the tissue growth. I put her in a gown and we waited to see the doc. Since Jordan isn't one for sitting still much anymore, she was all over the place!! Since I didn't want her crawling on the floor, I pulled up the side of the bed and let her crawl around on it. After about 15 minutes, I realized that she was leaking all over the place again and Jon came in and looked at it. We cleaned her up and gave her a clean gown and some gauze to try to soak up any leaking. The doc came in and looked her over. He decided to consult with her surgeon before deciding on what to do. He came back in and Dr. Neil had said to put 2ml more into the balloon and to use silver nitrate on the tissue to cauterize it. After a few minutes, we were ready to head home. Although, the entire trip took us almost 3 hours (there was lots of time sitting in the room waiting and Jordan wasn't so patient!!)
We followed up with Dr. Neil on Tuesday and he thought everything looked good now. He said that he had granulation tissue can't grow that fast so it was most likely Jordan's stomach that had prolapsed out of the tube site. He said he has never seen it, but it was theoretically possible and since the tissue was a dark purple instead of fleshy pink, it was probably her stomach.
I guess this journey we are on with Jordan is full of twists and turns! I feel like there is something new I learn every week! As for now, she is doing well and healing. He said for us to give the jumper a break for a few weeks but there's no reason she can't use it in the future. He recommended a tight onesie or ace bandage to secure the tube from rubbing too much.
Thursday, November 13, 2008
Sunday, November 9, 2008
"Welcome to Holland" and my thoughts...
Welcome to Holland
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?!" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special lovely things ... about Holland.
c1987 by Emily Perl Kingsley. All rights reserved.
This is something I came across a few weeks ago when trying to learn more about Jordan's diagnosis of mild cerebral palsy. At first, it brought tears to my eyes because I can sometimes feel the "loss of that dream." But at the same time, I know that God has given me Jordan and I know that because of her "differences" and the adjustment of being in "Holland" is something that has forced me to trust in Him even more. Although Jordan's disabilities are minor and she will hopefully, if God's will, overcome many of the obstacles in her life, I still struggle with adjusting my dreams for her.
Derrick and I still talk of her being in the Olympics for gymnastics someday because she is so petite and flexible - but the reality is that she is extremely hypotonic (low tone) and may never have the ability to even participate in a sport that requires so much strength. I have read articles that explain that she will likely have difficulty with balance and coordination - she may never enjoy the sport of soccer that was my life for so many years! I may never get to cheer her on in the sport that I LOVE!!
I find that the dreams I had before Jordan was born, and even until her diagnosis, are still in my heart, but I have to adjust them with my head. But when I think about it, these are MY dreams. They are not the dreams of my daughter. Or Conner. Or Mak. Who am I to decide what my child should become? Who am I do decide what sports or activities they should pursue?
All I know is that God has blessed me with three beautiful children - all unique and special in their own way. He has called me to "train a child in the way he should go" (Proverbs 22:6a) and "bring them up in the training and instruction of the Lord (Ephesians 6:4b). No where does the Bible tell me to make them into what I want them to be. Therefore, although I have landed in "Holland" with Jordan, the adjustment to this new place has brought a new perspective to raising all 3 of my children.
Although I know I fail everyday in parenting, I have God's grace to fall back on. When I lose my patience with Conner, I need to remember that God is patient with me. When I get angry at Mak, I need to remember how God exhibits self-control. When I feel sad at the difficulties Jordan faces, I need to remember that God is joyful. When I think I know what to do in a situation, I need to turn to His Word, pray, and follow his will. These children are His and I am simply on this earth to guide them in His way. I pray that I will view my parenting responsibility in this light, rather than projecting MY thoughts, ideas, goals, and dreams on them. God has made them who they are for a reason and I need to teach them to live out His will in their lives.
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?!" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special lovely things ... about Holland.
c1987 by Emily Perl Kingsley. All rights reserved.
This is something I came across a few weeks ago when trying to learn more about Jordan's diagnosis of mild cerebral palsy. At first, it brought tears to my eyes because I can sometimes feel the "loss of that dream." But at the same time, I know that God has given me Jordan and I know that because of her "differences" and the adjustment of being in "Holland" is something that has forced me to trust in Him even more. Although Jordan's disabilities are minor and she will hopefully, if God's will, overcome many of the obstacles in her life, I still struggle with adjusting my dreams for her.
Derrick and I still talk of her being in the Olympics for gymnastics someday because she is so petite and flexible - but the reality is that she is extremely hypotonic (low tone) and may never have the ability to even participate in a sport that requires so much strength. I have read articles that explain that she will likely have difficulty with balance and coordination - she may never enjoy the sport of soccer that was my life for so many years! I may never get to cheer her on in the sport that I LOVE!!
I find that the dreams I had before Jordan was born, and even until her diagnosis, are still in my heart, but I have to adjust them with my head. But when I think about it, these are MY dreams. They are not the dreams of my daughter. Or Conner. Or Mak. Who am I to decide what my child should become? Who am I do decide what sports or activities they should pursue?
All I know is that God has blessed me with three beautiful children - all unique and special in their own way. He has called me to "train a child in the way he should go" (Proverbs 22:6a) and "bring them up in the training and instruction of the Lord (Ephesians 6:4b). No where does the Bible tell me to make them into what I want them to be. Therefore, although I have landed in "Holland" with Jordan, the adjustment to this new place has brought a new perspective to raising all 3 of my children.
Although I know I fail everyday in parenting, I have God's grace to fall back on. When I lose my patience with Conner, I need to remember that God is patient with me. When I get angry at Mak, I need to remember how God exhibits self-control. When I feel sad at the difficulties Jordan faces, I need to remember that God is joyful. When I think I know what to do in a situation, I need to turn to His Word, pray, and follow his will. These children are His and I am simply on this earth to guide them in His way. I pray that I will view my parenting responsibility in this light, rather than projecting MY thoughts, ideas, goals, and dreams on them. God has made them who they are for a reason and I need to teach them to live out His will in their lives.
Saturday, November 1, 2008
Neurodevelopmental Appointment
On Thursday, Jordan saw Lynn Fagerman the nurse practitioner at Dr. Burdo-Hartman's office (neurodevelopmental pediatrics). Jordan weighed in at 18 lbs 9 oz - that's 3 pounds gained in just over 2 months!!! That is a HUGE increase in a short amount of time! She was 28.3 in long - she is steadily increasing at the normal rate of growth for length. She is currently 16 1/2 months old but is the weight of an average 9 month old and length of an average 10 month old. She is just below the 3rd percentile on the charts. This was exciting news because we have been wondering if she would ever reach the minimums on the chart. I'm pretty sure that by her next appt in 3 months she is likely to be on them!!
Over the course of the next month we will be transitioning Jordan from 6 feeding per day to 5. We will be gradually dropping the amount of her 10 or 11 pm feeding while increasing the other 5 per day. The overall amount per day will remain the same, but we will substitute 1/2 of her Pediasure with Pediasure with Fiber.
We will be stopping her Zantac in the next few days as her medication runs out. This was to reduce the amount of acid in her stomach due to her severe reflux. Since having the Nissen, she is unable to reflux so it isn't so much of a problem anymore. I am slightly concerned that the acid will affect the skin around her tube site but I will watch it closely.
They will be scheduling Jordan for another videofluoroscopy and oral motor evaluation at Mary Free Bed after the first of the year. After that she will begin therapy again and we will begin to reintroduce oral feeding. Lynn suggested waiting until January becasue at that time her feeding will again become very long and somewhat complicated. I will need to attempt to feed some food orally and the calculate what amount of nutrition was received (due to thickening the Pediasure) and subtract that from the amount needed and supply the remainder amount through the tube. Her feedings will probably take at least 45 minutes at that point. I am excited to move forward with oral feeding, but am happy to be able to get through the busy holiday season first!
I discussed with Lynn all of the "little things" we notice that are different about Jordan and why they don't add up to anything. She explained that things such as her ear tags, simeon crease in her hand, straight eyebrows, extra fat pads on her palms and heels are called "soft signs" and can help identify a specific diagnosis but don't necessarily always add up to one. In Jordan's case, Dr. Toriello (geneticist) evaluated her and confirmed through chromosomal testing that she didn't have any of the specific syndromes or disorders that those signs could indicate. Lynn encouraged us to continue to have her evaluated over time by Dr. Toriello as Jordan's features and symptoms could change and a future diagnosis is still possible.
One of the main concerns I brought up was how Jordan still falls over backward several times per day. This is something that most kids stop doing fairly soon after learning to sit. She explained that Jordan has Hypotonia which is abnormally low muscle tone. She said that it is fairly significant in her core muscles throughout her torso but also in her arms and legs. She noticed it becasue of Jordan's posture when sitting. She encouraged me to work with her therapist through Early On to strengthen those muscles and hopefully we will see her falling over less. That is also the reason Jordan has difficulty standing for any length of time. She has about a 5-10 second limit and then she either sits down or starts leaning over whatever she has pulled up on to try to support herself. Again, we need to work on strengthening those muscles through therapy.
Overall, I was very pleased with this appointment because it was so throrough and complete. We were with Lynn for an hour and I felt all of my questions were answered. I also feel more comfortable knowing that if questions arise, I can call at anytime and discuss them with her.
Over the course of the next month we will be transitioning Jordan from 6 feeding per day to 5. We will be gradually dropping the amount of her 10 or 11 pm feeding while increasing the other 5 per day. The overall amount per day will remain the same, but we will substitute 1/2 of her Pediasure with Pediasure with Fiber.
We will be stopping her Zantac in the next few days as her medication runs out. This was to reduce the amount of acid in her stomach due to her severe reflux. Since having the Nissen, she is unable to reflux so it isn't so much of a problem anymore. I am slightly concerned that the acid will affect the skin around her tube site but I will watch it closely.
They will be scheduling Jordan for another videofluoroscopy and oral motor evaluation at Mary Free Bed after the first of the year. After that she will begin therapy again and we will begin to reintroduce oral feeding. Lynn suggested waiting until January becasue at that time her feeding will again become very long and somewhat complicated. I will need to attempt to feed some food orally and the calculate what amount of nutrition was received (due to thickening the Pediasure) and subtract that from the amount needed and supply the remainder amount through the tube. Her feedings will probably take at least 45 minutes at that point. I am excited to move forward with oral feeding, but am happy to be able to get through the busy holiday season first!
I discussed with Lynn all of the "little things" we notice that are different about Jordan and why they don't add up to anything. She explained that things such as her ear tags, simeon crease in her hand, straight eyebrows, extra fat pads on her palms and heels are called "soft signs" and can help identify a specific diagnosis but don't necessarily always add up to one. In Jordan's case, Dr. Toriello (geneticist) evaluated her and confirmed through chromosomal testing that she didn't have any of the specific syndromes or disorders that those signs could indicate. Lynn encouraged us to continue to have her evaluated over time by Dr. Toriello as Jordan's features and symptoms could change and a future diagnosis is still possible.
One of the main concerns I brought up was how Jordan still falls over backward several times per day. This is something that most kids stop doing fairly soon after learning to sit. She explained that Jordan has Hypotonia which is abnormally low muscle tone. She said that it is fairly significant in her core muscles throughout her torso but also in her arms and legs. She noticed it becasue of Jordan's posture when sitting. She encouraged me to work with her therapist through Early On to strengthen those muscles and hopefully we will see her falling over less. That is also the reason Jordan has difficulty standing for any length of time. She has about a 5-10 second limit and then she either sits down or starts leaning over whatever she has pulled up on to try to support herself. Again, we need to work on strengthening those muscles through therapy.
Overall, I was very pleased with this appointment because it was so throrough and complete. We were with Lynn for an hour and I felt all of my questions were answered. I also feel more comfortable knowing that if questions arise, I can call at anytime and discuss them with her.
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