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.
Tuesday, October 28, 2008
You've Come a Long Way, Baby!!!
Jordan is developing so quickly it is amazing to us!! She is now pulling up on anything and everything - the couch, her music table, window sills, and even my legs!! I can't believe that only a few short months ago she was not even crawling! It is very encouraging to see her blossom just as we have been praying!
I have been doing some research on mild cerebral palsy and found some interesting things. Most people with level 1 or 2 (Jordan's diagnosis) are able to walk without assistance (braces, walkers, etc) but struggle with issues with balance and coordination. It helps explain why Jordan still falls over backward when sitting sometimes. I read that many are able to participate in sports, but need to be directed toward certain ones. Soccer and basketball might be difficult for her but swimming and martial arts are highly recommended. I am in the process of doing some investigating to see if there are scholarships available to get her into a swimming class at the YMCA. She loves her bath and I'm sure she would love the pool!! Overall, I felt encouraged that while Jordan may seem behind in meeting her developmental milestones now, it is normal and that in time, she is likely to be able to participate in activities on her own!!
Jordan's speech is still significantly delayed and we mostly hear only the "b" sound and an occasional "g" or initiating vowel sound. However, she LOVES to imitate - clapping, stomping feet, etc. so we are working on sign language with her. I did some with Conner and I am trying to familiarize myself with the signs again as well as several new ones so we can encourage communication with her. Although I am still waiting for the day she says "mama!"
Jordan's personality is starting to come out as well! She has started having temper tantrums when she doesn't get her way. If we take something away from her that she wants (although shouldn't have), she arches her back and flips herself backward and cries! She has hurt my wrist a few times so I am VERY careful how I am positioned when I take it now. She definitely knows what she wants and expresses that to us clearly! She also loves to play hide & seek! She will go around a corner and peek back at me and then do it over and over. It is adorable to see her smile and laugh when she's playing!
I am so thankful to all of you for your prayers! God has blessed us with an amazing daughter and we feel grateful that we are given the opportunity to raise her! She has come so far and yet we know that she still has so much yet to achieve! Continue to keep her in your prayers and I will do my best to keep you updated through the blog.
I have been doing some research on mild cerebral palsy and found some interesting things. Most people with level 1 or 2 (Jordan's diagnosis) are able to walk without assistance (braces, walkers, etc) but struggle with issues with balance and coordination. It helps explain why Jordan still falls over backward when sitting sometimes. I read that many are able to participate in sports, but need to be directed toward certain ones. Soccer and basketball might be difficult for her but swimming and martial arts are highly recommended. I am in the process of doing some investigating to see if there are scholarships available to get her into a swimming class at the YMCA. She loves her bath and I'm sure she would love the pool!! Overall, I felt encouraged that while Jordan may seem behind in meeting her developmental milestones now, it is normal and that in time, she is likely to be able to participate in activities on her own!!
Jordan's speech is still significantly delayed and we mostly hear only the "b" sound and an occasional "g" or initiating vowel sound. However, she LOVES to imitate - clapping, stomping feet, etc. so we are working on sign language with her. I did some with Conner and I am trying to familiarize myself with the signs again as well as several new ones so we can encourage communication with her. Although I am still waiting for the day she says "mama!"
Jordan's personality is starting to come out as well! She has started having temper tantrums when she doesn't get her way. If we take something away from her that she wants (although shouldn't have), she arches her back and flips herself backward and cries! She has hurt my wrist a few times so I am VERY careful how I am positioned when I take it now. She definitely knows what she wants and expresses that to us clearly! She also loves to play hide & seek! She will go around a corner and peek back at me and then do it over and over. It is adorable to see her smile and laugh when she's playing!
I am so thankful to all of you for your prayers! God has blessed us with an amazing daughter and we feel grateful that we are given the opportunity to raise her! She has come so far and yet we know that she still has so much yet to achieve! Continue to keep her in your prayers and I will do my best to keep you updated through the blog.
Sunday, October 5, 2008
Standing, Clothes, and Another Dr. Appt.
Friday night Derrick and I were sitting at the table and Jordan was in the port-a-crib while we ate dinner. Out of the corner of my eye, I saw her sit down. I wasn't sure, but I kept watching and the next thing I knew, she pulled herself up to standing!!! Derrick and I watched in AMAZEMENT as our little girl continued to pull herself up over and over again (she can only stand for a few seconds)!!! I have been working with her for several weeks on pulling up to standing. If she's wearing her "hip-helpers" and I am helping keep her feet straight and guiding her up, she can do it, but I had never seen her do it on her own. We are very encouraged by this accomplishment as it shows her strength increasing and her desire to be mobile driving her forward meet milestones!
This past week, the weather turned colder and I had to face the fact that summer is over and it was time to put away the summer clothes and get out the fall one's. I tried some of her outfits on her and realized that she had FINALLY outgrown the 3-6 month clothes she has been wearing for a YEAR!!! Last spring I started using some 6 month clothes and mid-summer I even used a few 9 month outfits. I am now able to put her into 12 month clothes because she is gaining weight and getting bigger in her belly. She has consistently been so skinny that the waist of outfit's were always too big.
Unfortunately, since her tube leaks constantly, we have quite a bit of staining on some of her clothes. I am trying to be careful when dressing her in nice/cute clothes to cover the tube with an extra pad of gauze to try to avoid stains. She has an appointment with the surgeon tomorrow afternoon to have them address some of the problems we have been having with the leaking and tissue growth. We also had an internal stitch work it's way up the tube to the button - they didn't feel it was a big problem so we had to wait a few days to have it checked out. I'm not sure if they will put the new tube in, but I will bring it along with me in case they can.
This past week, the weather turned colder and I had to face the fact that summer is over and it was time to put away the summer clothes and get out the fall one's. I tried some of her outfits on her and realized that she had FINALLY outgrown the 3-6 month clothes she has been wearing for a YEAR!!! Last spring I started using some 6 month clothes and mid-summer I even used a few 9 month outfits. I am now able to put her into 12 month clothes because she is gaining weight and getting bigger in her belly. She has consistently been so skinny that the waist of outfit's were always too big.
Unfortunately, since her tube leaks constantly, we have quite a bit of staining on some of her clothes. I am trying to be careful when dressing her in nice/cute clothes to cover the tube with an extra pad of gauze to try to avoid stains. She has an appointment with the surgeon tomorrow afternoon to have them address some of the problems we have been having with the leaking and tissue growth. We also had an internal stitch work it's way up the tube to the button - they didn't feel it was a big problem so we had to wait a few days to have it checked out. I'm not sure if they will put the new tube in, but I will bring it along with me in case they can.
Tuesday, September 23, 2008
GROWING!!!
Last week I stopped by the pediatrician's office to pick up some papers for Jordan's therapy and I asked if I could have a weight check to see how she's grown in the past month since her g-tube was put in. Jordan weighed 16 lbs 10 oz.
That's a whole pound gained in a month!!!!!
At 6 months she weighed 13 lbs 9 oz and was still only 15 lbs 10 oz on the day of her surgery at 14 months - it took her 8 months to gain only 2 lbs and we now have a full pound in one month!!
Today at the geneticist's office, they measured her length and she was 28 1/4 in long. At her last feeding therapy on 8/12, she was 27 in. That's over an inch growth in length in just over a month! Again, we are very pleased to see this in her. In fact, we notice more than anything that she's starting to look longer.
When charted, she is now only slightly under the 5th percentile for length and is actually the length of an average 10 month old! Her weight is catching up, but is still significantly below the 5th percentile and is the weight of an average 7 month old! She still needs to keep packing on the pounds!!
I guess that means I should start lifting weights because this girl is getting bigger!!!
That's a whole pound gained in a month!!!!!
At 6 months she weighed 13 lbs 9 oz and was still only 15 lbs 10 oz on the day of her surgery at 14 months - it took her 8 months to gain only 2 lbs and we now have a full pound in one month!!
Today at the geneticist's office, they measured her length and she was 28 1/4 in long. At her last feeding therapy on 8/12, she was 27 in. That's over an inch growth in length in just over a month! Again, we are very pleased to see this in her. In fact, we notice more than anything that she's starting to look longer.
When charted, she is now only slightly under the 5th percentile for length and is actually the length of an average 10 month old! Her weight is catching up, but is still significantly below the 5th percentile and is the weight of an average 7 month old! She still needs to keep packing on the pounds!!
I guess that means I should start lifting weights because this girl is getting bigger!!!
Appointment with Genetist, Helga Toriello
This morning Derrick and I took Jordan to Helga Toriello, the geneticist in Grand Rapids. We met with a genetic counselor for about 45 minutes going over the paperwork we had filled out and answering many questions about our medical history. She wanted to know everything about Jordan's pregnancy and our other children as well as info on our family medical history. During this process she mentioned that the chromosomal testing came back normal. We had not heard that until this point and while their was some relief, we still wondered what was going on with our baby girl.
When Dr. Toriello came in, Jordan was sitting on my lap. She stood and examined her for quite a while making comments about features she notices and asking questions about things that had been brought up by other doctors and specialists. Some she agreed with, others she dismissed. She saw the Simean Crease on her hands, the extra padding on her palms and examined her heels. She said her jaw didn't seem recessed, but was rather short, which she said was similar to mine. She checked the measurement of her eye-spacing and identified that as normal - in fact she said she had Derrick's eyes. She was most intrigued by her brow-line. I'm not exactly what she saw, but it was the most prominent facial feature that she focused on.
Dr. Toriello felt that some of the small stature and delay in development may be a result of the lack of nutrition that Jordan was receiving. She did however, want to examine the pathology report on the small placenta because she felt that there could be a connection to that, her intra-uterine growth restriction, and her current small size. She was leaning mostly on a chromosome disorder called UPD, Uniparental Disomy. From what she explained and what I have read online, it basically means that on one of Jordan's 46 chromosomes, she inherited an extra chromosome from me. A normal baby receives one chromosome from mom and one from dad. If Jordan received 2 from me for a specific chromosome (they mentioned 7) and 1 from Derrick, then at some point tried to correct itself and got rid of the extra chromosome, but got rid of Derrick's and not the extra one from me, then she would end up with what's called maternal UPD7. This is most commonly associated with severe growth restriction.
We now have to wait for the report from Dr. Toriello in the next few weeks and see what happens with Jordan in the next 8 months. We will then follow-up with Dr. Toriello and see what kinds of improvements Jordan has made now that her nutritional levels are where they should be. If we feel she has made up significant ground in growth and development, we may not pursue any further testing. If we feel that Jordan is still significantly behind in development and still considerably small in stature, we may process through the testing for maternal UPD. This would require blood samples from Derrick, myself and Jordan. Essentially we will be testing paternity on the chromosomes that they feel may be affected. If one of them doesn't possess any of Derrick's genes, we have maternal UPD.
One of the biggest things Dr. Toriello pointed out was that she didn't feel that the results of these tests would have any impact on Jordan's current treatment. More than anything it would identify what to expect in her future growth and development.
I suppose I should be thrilled that we ruled out several of the chromosomal disorders that I have spent hours researching and wondering if Jordan had. Unfortunately, I guess I still feel like we are floating around without any solid answers. I am relieved that there seem to be no strong indications of anything that will have a HUGE impact on Jordan's life. The strongest thing Dr. Toriello indicated was that she might be small in stature. As a female, Derrick and I are less concerned that she might be extremely petite. We keep joking that she might be a fabulous gymnast because she is extremely strong and flexible and is packaged in such a small bundle of energy! Can't you just see her flipping herself around on a gymnastics mat??
Thank you all for your encouragement and prayers. Please continue to pray for Jordan and our family as we may not have SOLID answers for many months to come. Thank you for being a part of this journey with us and I will continue to keep everyone updated through this blog.
When Dr. Toriello came in, Jordan was sitting on my lap. She stood and examined her for quite a while making comments about features she notices and asking questions about things that had been brought up by other doctors and specialists. Some she agreed with, others she dismissed. She saw the Simean Crease on her hands, the extra padding on her palms and examined her heels. She said her jaw didn't seem recessed, but was rather short, which she said was similar to mine. She checked the measurement of her eye-spacing and identified that as normal - in fact she said she had Derrick's eyes. She was most intrigued by her brow-line. I'm not exactly what she saw, but it was the most prominent facial feature that she focused on.
Dr. Toriello felt that some of the small stature and delay in development may be a result of the lack of nutrition that Jordan was receiving. She did however, want to examine the pathology report on the small placenta because she felt that there could be a connection to that, her intra-uterine growth restriction, and her current small size. She was leaning mostly on a chromosome disorder called UPD, Uniparental Disomy. From what she explained and what I have read online, it basically means that on one of Jordan's 46 chromosomes, she inherited an extra chromosome from me. A normal baby receives one chromosome from mom and one from dad. If Jordan received 2 from me for a specific chromosome (they mentioned 7) and 1 from Derrick, then at some point tried to correct itself and got rid of the extra chromosome, but got rid of Derrick's and not the extra one from me, then she would end up with what's called maternal UPD7. This is most commonly associated with severe growth restriction.
We now have to wait for the report from Dr. Toriello in the next few weeks and see what happens with Jordan in the next 8 months. We will then follow-up with Dr. Toriello and see what kinds of improvements Jordan has made now that her nutritional levels are where they should be. If we feel she has made up significant ground in growth and development, we may not pursue any further testing. If we feel that Jordan is still significantly behind in development and still considerably small in stature, we may process through the testing for maternal UPD. This would require blood samples from Derrick, myself and Jordan. Essentially we will be testing paternity on the chromosomes that they feel may be affected. If one of them doesn't possess any of Derrick's genes, we have maternal UPD.
One of the biggest things Dr. Toriello pointed out was that she didn't feel that the results of these tests would have any impact on Jordan's current treatment. More than anything it would identify what to expect in her future growth and development.
I suppose I should be thrilled that we ruled out several of the chromosomal disorders that I have spent hours researching and wondering if Jordan had. Unfortunately, I guess I still feel like we are floating around without any solid answers. I am relieved that there seem to be no strong indications of anything that will have a HUGE impact on Jordan's life. The strongest thing Dr. Toriello indicated was that she might be small in stature. As a female, Derrick and I are less concerned that she might be extremely petite. We keep joking that she might be a fabulous gymnast because she is extremely strong and flexible and is packaged in such a small bundle of energy! Can't you just see her flipping herself around on a gymnastics mat??
Thank you all for your encouragement and prayers. Please continue to pray for Jordan and our family as we may not have SOLID answers for many months to come. Thank you for being a part of this journey with us and I will continue to keep everyone updated through this blog.
Thursday, September 18, 2008
Mid-September Update (creative title, huh??)
WOW! It's been a while since I've posted anything! Life is busy, but there have been no HUGE events to write about. Jordan continues to do well with her tube feedings. We saw the surgeon last week and other than some granulation tissue that is forming around the tube site, everything looks good. He treated that but we have some growing again in a different location - I will be calling him about this soon. We did determine that her valve isn't working properly which is causing a considerable amount of leaking. This basically requires me to change her gauze frequently and use a small hairband to keep it closed.
Jordan started group therapy at Ken-O-Sha last week and I think it will be good. Jordan is by far the most active of the bunch - they are called the "Rug Rats"! I suppose she maybe fit better into this group before she started crawling and getting into everything as they are all non-mobile. There are 8 kids and their parents' in the group and we sing some songs while doing motions with the kids and then work with them on some of the equipment the school has, then the therapists work with the kids for a while and the parents leave to talk about life with a child with disabilities, and then we come back for a closing song. It is amazing how each of the children in her group all have individual challenges they are facing and things they are working to accomplish. It helps me to see that I'm not the only one who is faced with the daily difficulties of a child with special needs.
We will be meeting with Dr. Helga Toriello next week on Tuesday, September 23. We are truly hoping for some answers regarding if Jordan has some sort of chromosomal syndrome. The doctors have mentioned some and I have spent hours doing online research and discovered that all it does is worry me more!! I have decided to wait to see what we find out next week. Please be praying for this appointment and whatever results it may reveal.
I have lots of pics to post of Jordan so I will try to get to them in the next few days!!
I got my bandages off my wrist a few days ago and I am finding it difficult to adjust to taking it easy when I have free use of my hand/arm. I have hurt it a couple of times trying to hold Jordan or picking Conner up. Please pray for continued healing. I have also been extremely exhausted since Jordan's surgery. I was up for a week for night feedings and then school started and I have been getting up by 6am to get Mak out the door. I am trying to adjust my schedule so I get more sleep, but it has been difficult. Please pray for energy for me to get through my busy days and to be able to care for my family.
Derrick is scheduled to have surgery on his right foot on September 30. This is the same procedure he had done on his left foot in January. The recovery time is long and it is difficult for me to have little or no help for a week or so. Please pray for a successful surgery and quick recovery and healing.
I have often times wondered why I don't just collapse, start crying, and give up with everything I feel like I am dealing with right now. Then I remember that all of you are praying for us and God is carrying us through it. I so thankful for our friends and those that have prayed for us during this time. Please continue to pray as I have felt more burdened with things lately. Maybe it's that we aren't in the middle of the storm so much anymore with Jordan, but we are faced with daily challenges and continue to need your prayers. Thank you so much for your support and encouragement!!
Jordan started group therapy at Ken-O-Sha last week and I think it will be good. Jordan is by far the most active of the bunch - they are called the "Rug Rats"! I suppose she maybe fit better into this group before she started crawling and getting into everything as they are all non-mobile. There are 8 kids and their parents' in the group and we sing some songs while doing motions with the kids and then work with them on some of the equipment the school has, then the therapists work with the kids for a while and the parents leave to talk about life with a child with disabilities, and then we come back for a closing song. It is amazing how each of the children in her group all have individual challenges they are facing and things they are working to accomplish. It helps me to see that I'm not the only one who is faced with the daily difficulties of a child with special needs.
We will be meeting with Dr. Helga Toriello next week on Tuesday, September 23. We are truly hoping for some answers regarding if Jordan has some sort of chromosomal syndrome. The doctors have mentioned some and I have spent hours doing online research and discovered that all it does is worry me more!! I have decided to wait to see what we find out next week. Please be praying for this appointment and whatever results it may reveal.
I have lots of pics to post of Jordan so I will try to get to them in the next few days!!
I got my bandages off my wrist a few days ago and I am finding it difficult to adjust to taking it easy when I have free use of my hand/arm. I have hurt it a couple of times trying to hold Jordan or picking Conner up. Please pray for continued healing. I have also been extremely exhausted since Jordan's surgery. I was up for a week for night feedings and then school started and I have been getting up by 6am to get Mak out the door. I am trying to adjust my schedule so I get more sleep, but it has been difficult. Please pray for energy for me to get through my busy days and to be able to care for my family.
Derrick is scheduled to have surgery on his right foot on September 30. This is the same procedure he had done on his left foot in January. The recovery time is long and it is difficult for me to have little or no help for a week or so. Please pray for a successful surgery and quick recovery and healing.
I have often times wondered why I don't just collapse, start crying, and give up with everything I feel like I am dealing with right now. Then I remember that all of you are praying for us and God is carrying us through it. I so thankful for our friends and those that have prayed for us during this time. Please continue to pray as I have felt more burdened with things lately. Maybe it's that we aren't in the middle of the storm so much anymore with Jordan, but we are faced with daily challenges and continue to need your prayers. Thank you so much for your support and encouragement!!
Monday, September 8, 2008
Doing Well!
Jordan has been doing really well! She is taking her feedings without any problems. The biggest difficulty is when she pulls the feeding tube out from the button in her belly and her Pediasure starts dripping all over the place!! This happens a couple of times a day! I will be talking to her surgeon at her appt. on Wednesday to see if he would be willing to put the other kind of button in - it locks the feeding tube in place so it won't disconnect during a feeding. I am also looking forward to an official weight check. The site where the button was placed is looking a little raw so I am trying to keep it clean and dry to allow it to heal. She still plays with it so I am keeping it covered as much as possible.
Last week Jordan also started back with her Early On therapist. Betsy brought "hip helpers" that are like bike shorts with the legs sewn together. This puts Jordan's legs in the proper position for crawling and moving around. By strengthing the proper muscles and getting her used to that position, we are hoping that she will be able to do it on her own eventually. We worked on getting her to stand from sitting on my lap. This week we also start her group therapy at Ken-O-Sha.
I had my wrist surgery last week and I am struggling with doing many of the daily tasks I have taken for granted. I am still taking pain meds because I often find myself hurting my wrist by doing things I probably shouldn't be doing, but need to be done. I will have my bandage on for a little over a week more and then I just have to take it easy for a couple of weeks. Hopefully, I will have full function of my hand/wrist by the end of September.
Last week Jordan also started back with her Early On therapist. Betsy brought "hip helpers" that are like bike shorts with the legs sewn together. This puts Jordan's legs in the proper position for crawling and moving around. By strengthing the proper muscles and getting her used to that position, we are hoping that she will be able to do it on her own eventually. We worked on getting her to stand from sitting on my lap. This week we also start her group therapy at Ken-O-Sha.
I had my wrist surgery last week and I am struggling with doing many of the daily tasks I have taken for granted. I am still taking pain meds because I often find myself hurting my wrist by doing things I probably shouldn't be doing, but need to be done. I will have my bandage on for a little over a week more and then I just have to take it easy for a couple of weeks. Hopefully, I will have full function of my hand/wrist by the end of September.
Saturday, August 30, 2008
Adjusting...to the New Normal
Well, Jordan has had her feeding tube in for over a week and I have been feeding her through it for one week now. I am fairly comfortable with what I am doing, although she makes it difficult by pulling it our or kicking the tube full of Pediasure. I am amazed at how quickly she is healing! She still has the steri-strips over her stitches and the stoma (site where the tube is placed) is healing nicely. She is getting just over 25 oz per day over 6 feedings. I have been able to work her out of the overnight feedings - she does get one feeding while sleeping - usually 10 or 11 pm. I am getting more sleep which makes it much easier for me to function day to day.
Jordan is back to herself, crawling around and getting into everything. She especially loves to follow Conner as he runs around the house. She is pulling herself up onto her knees and I'm sure will soon pull up to standing. I am still amazed at how far she has come over the past 6 months!!
We found out yesterday that the stomach acid can bleach her clothing! She was in the exersaucer while we ate dinner. After we were done, Derrick picked her up to feed her and her shirt was wet. It looked kinda funny and I looked closer and realized that the once cute blue tank top with butterflies on it, had a big bleached spot on the front. I guess we will keep her in ugly white onesies at home and only dress her when we are going out of the house. It kinda stinks because she has sooooo many cute clothes but I don't want them to get ruined!
Thank you to everyone for your prayers and support. We are amazed at how caring and generous our friends are. We have seen God working through this situation and in Jordan. Please continue to pray for her continued growth and development. We are so excited at the things she is doing, but we know that there's lots more things that she will accomplish!! She continues to blossom more and more every day.
Another thing is that I will be having surgery on my wrist on Thursday, Sept. 4th. I have DeQuervain's Tenosynovitis - it's a form of tendonitis with the 2 tendons that connect my thumb to my arm. It starting causing some discomfort several months ago and escalated to severe pain at times. After trying Naproxin and icing it, seeing a hand specialist and having a shot of cortisone and wearing a splint for the past 6 weeks, they are going to go in and fix it. I should be unable to do much for several days following the surgery and will be restricted for about a month. Please pray that the procedure goes smoothly and the recovery is quick and I am able to care for my family and kids.
Jordan is back to herself, crawling around and getting into everything. She especially loves to follow Conner as he runs around the house. She is pulling herself up onto her knees and I'm sure will soon pull up to standing. I am still amazed at how far she has come over the past 6 months!!
We found out yesterday that the stomach acid can bleach her clothing! She was in the exersaucer while we ate dinner. After we were done, Derrick picked her up to feed her and her shirt was wet. It looked kinda funny and I looked closer and realized that the once cute blue tank top with butterflies on it, had a big bleached spot on the front. I guess we will keep her in ugly white onesies at home and only dress her when we are going out of the house. It kinda stinks because she has sooooo many cute clothes but I don't want them to get ruined!
Thank you to everyone for your prayers and support. We are amazed at how caring and generous our friends are. We have seen God working through this situation and in Jordan. Please continue to pray for her continued growth and development. We are so excited at the things she is doing, but we know that there's lots more things that she will accomplish!! She continues to blossom more and more every day.
Another thing is that I will be having surgery on my wrist on Thursday, Sept. 4th. I have DeQuervain's Tenosynovitis - it's a form of tendonitis with the 2 tendons that connect my thumb to my arm. It starting causing some discomfort several months ago and escalated to severe pain at times. After trying Naproxin and icing it, seeing a hand specialist and having a shot of cortisone and wearing a splint for the past 6 weeks, they are going to go in and fix it. I should be unable to do much for several days following the surgery and will be restricted for about a month. Please pray that the procedure goes smoothly and the recovery is quick and I am able to care for my family and kids.
Sunday, August 24, 2008
Difficult First Night Home
Last night was difficult for me. Jordan's feedings seemed to go well during the day but at her 10pm feeding I started having some technical difficulties with the syringe part of the feeding tube that I use to check if there is any residual food from her last feeding. I am supposed to do this to determine if it is okay to feed her yet or if I need to wait another hour to let her food digest. Well, it was kinda sticking and I was having difficulty with it, but I made it work and figured it was just maybe a little sticky or something.
Then I went to bed around 11 and woke up for her 1am feeding. I was soooo tired but got up and got everything together. When I tried to stick the syringe into the tube it wouldn't go in at all. It was almost like it got stretched out and wouldn't fit into it. I struggled with it for a few minutes and then Derrick came into Jordan's room to help and took it out to the kitchen to work on it. He came back in and had used some Pediasure to lubricate it to get it to go in. It was extremely difficult to pull back on to check the residuals in her stomach, but I felt there wasn't much there and it was okay to proceed with her feeding. Derrick left and went to take a shower and get ready for bed (yes, he was still up putting together some projector brackets for a project at church). I fed Jordan her Pediasure and then gathered all of the feeding tubes and accessories to go clean them. I opened the door from Jordan's room into ours and closed it behind me.
That's when I realized there was a bat flying around our bedroom!!! I knew Derrick had seen one the night before but couldn't find it after searching the house for an hour and thought maybe it somehow got out of the house. Well, apparently it was still here. I freaked out and ducked down onto the floor and covered my head with my hands. I yelled for Derrick and told him the bat was in our room and he came and looked in and told me to go back into Jordan's room. I was scared so it took me a few minutes and finally I jumped up and quickly slid through the door and shut it behind me. Derrick turned on the light to our bedroom and grabbed our bat killing tennis rackets (this happens several times a year) and got it and took it outside.
By this time, Jordan was crying so I had picked her up and was rocking her. Partly for her comfort, and partly for mine. Derrick came in and told me that it was gone and he went back to getting ready for bed. At this point, I was completely flooded with emotions and started crying. I realized that I had not yet dealt with everything that we had just gone through. I was overcome with the realization that Jordan's feeding issues were severe enough that she required a medical intervention to get her nutrition. I mourned over the fact that she now had a tube sticking out of her tummy and she would always have a scar from the surgery. I feared what the future might hold and the unknown that lay ahead of us. I rejoiced that everything had gone well and she was healing quickly. There were so many things running through my mind I didn't know what I was actually feeling.
I eventually made it back to bed and cried for a while before falling asleep. When I got up for Jordan's 4am feeding, I had more difficulties with the syringe and the rubber stopper popped off inside the tube. I fished it out with my hand and proceeded with the feeding assuming she was ready to be fed. She took it well and fell right back to sleep. I was exhausted and had only gotten about 2 hours of sleep at this point so I quickly fell asleep. I got up for her 7am feeding and started having difficulty with the syringe and decided to just bypass that step of the feeding. She again tolerated the feeding well and went back to sleep. I got a little more sleep before I heard Jordan waking up and got up myself to take a quick shower. I am now remembering just how exhausting it is to get up in the middle of the night to feed a baby. I will definitely try to get a nap this afternoon when she goes down for hers.
I thought the hospital had sent us home with extra feeding supplies but when I unpacked everything at home, I found out it was tubes for the other kind of G-tube and that there was no syringe tube. I was quite frustrated with this, but didn't figure I would need replacement parts this soon. I have called the surgeon and he wants me to skip that step of the feeding and to call their office on Monday to have them order extra supplies from the home health care company.
Please pray that we have no more difficulties with Jordan's feedings and that I gain confidence in knowing I am doing things correctly. Pray also for some peace for me as I adjust to this new phase in Jordan's development. Thank You!!
Then I went to bed around 11 and woke up for her 1am feeding. I was soooo tired but got up and got everything together. When I tried to stick the syringe into the tube it wouldn't go in at all. It was almost like it got stretched out and wouldn't fit into it. I struggled with it for a few minutes and then Derrick came into Jordan's room to help and took it out to the kitchen to work on it. He came back in and had used some Pediasure to lubricate it to get it to go in. It was extremely difficult to pull back on to check the residuals in her stomach, but I felt there wasn't much there and it was okay to proceed with her feeding. Derrick left and went to take a shower and get ready for bed (yes, he was still up putting together some projector brackets for a project at church). I fed Jordan her Pediasure and then gathered all of the feeding tubes and accessories to go clean them. I opened the door from Jordan's room into ours and closed it behind me.
That's when I realized there was a bat flying around our bedroom!!! I knew Derrick had seen one the night before but couldn't find it after searching the house for an hour and thought maybe it somehow got out of the house. Well, apparently it was still here. I freaked out and ducked down onto the floor and covered my head with my hands. I yelled for Derrick and told him the bat was in our room and he came and looked in and told me to go back into Jordan's room. I was scared so it took me a few minutes and finally I jumped up and quickly slid through the door and shut it behind me. Derrick turned on the light to our bedroom and grabbed our bat killing tennis rackets (this happens several times a year) and got it and took it outside.
By this time, Jordan was crying so I had picked her up and was rocking her. Partly for her comfort, and partly for mine. Derrick came in and told me that it was gone and he went back to getting ready for bed. At this point, I was completely flooded with emotions and started crying. I realized that I had not yet dealt with everything that we had just gone through. I was overcome with the realization that Jordan's feeding issues were severe enough that she required a medical intervention to get her nutrition. I mourned over the fact that she now had a tube sticking out of her tummy and she would always have a scar from the surgery. I feared what the future might hold and the unknown that lay ahead of us. I rejoiced that everything had gone well and she was healing quickly. There were so many things running through my mind I didn't know what I was actually feeling.
I eventually made it back to bed and cried for a while before falling asleep. When I got up for Jordan's 4am feeding, I had more difficulties with the syringe and the rubber stopper popped off inside the tube. I fished it out with my hand and proceeded with the feeding assuming she was ready to be fed. She took it well and fell right back to sleep. I was exhausted and had only gotten about 2 hours of sleep at this point so I quickly fell asleep. I got up for her 7am feeding and started having difficulty with the syringe and decided to just bypass that step of the feeding. She again tolerated the feeding well and went back to sleep. I got a little more sleep before I heard Jordan waking up and got up myself to take a quick shower. I am now remembering just how exhausting it is to get up in the middle of the night to feed a baby. I will definitely try to get a nap this afternoon when she goes down for hers.
I thought the hospital had sent us home with extra feeding supplies but when I unpacked everything at home, I found out it was tubes for the other kind of G-tube and that there was no syringe tube. I was quite frustrated with this, but didn't figure I would need replacement parts this soon. I have called the surgeon and he wants me to skip that step of the feeding and to call their office on Monday to have them order extra supplies from the home health care company.
Please pray that we have no more difficulties with Jordan's feedings and that I gain confidence in knowing I am doing things correctly. Pray also for some peace for me as I adjust to this new phase in Jordan's development. Thank You!!
Saturday, August 23, 2008
Home from the Hospital on my Birthday - the Best Present EVER!!
Let me start by saying THANK YOU for all of the prayers!! Many of you have kept Jordan and our family in your prayers over the past several days to months and we have experienced the grace of God every day because of them. I am amazed at how much is happening in our lives and yet we are somehow able to stay strong amidst the storms. Thank you for encouraging us through this difficult time.
We started Jordan's feedings yesterday about noon. We started with 1 oz. every 3 hours. If she was able to handle it for 2 feedings, we increased the amount by 1/2 oz. We continued this every 3 hours. Jordan's goal was 24 oz of Pediasure which breaks down to 3 oz every 3 hours (8 feedings in a 24 hour period). Jordan reached her feeding goal of 3 oz at noon today and was able to go home. After the process of discharge instructions and emergency tube info, we finally left the hospital at 2:30pm.
We are now at home. Jordan had her first home-feeding at 3:45pm and then fell asleep and is still napping. I laid down for a brief nap after cleaning the tubes and am now getting caught up on everything at home. We will continue to feed Jordan every 3 hours until she sees the surgeon for her follow-up appt in 2 weeks. Then I will contact Dr. Burdo-Hartman's office and they will give me instructions on how to get Jordan onto 5 larger daytime only feedings. So for the next few weeks it will be like having a newborn at home with a couple of nighttime feedings every night. Derrick and I discussed her schedule and think that we can get it to where I will only have to get up 2 times per night (of course, that doesn't include all the times Conner might be up and need to be put back in bed...) At this point, we need to take it slow during the feedings, so they still take about 15-20 minutes each. After she becomes more comfortable with them, we should be able to increase the speed of the feed so it should only be 10 minutes or so.
We are so relieved that Jordan made it through surgery and recovery so quickly. Several of the nurses commented on how well she tolerated the feedings and how her overall recovery was quicker than many G-tube patients. A couple of the nurses took quite a liking to Jordan and would just hang out in the room and play with her! I was very happy with everyone at DeVos Children's Hospital.
Overall, the stay in the hospital was great! The nurses were wonderful - I never had one that I didn't like. Our first night we had a roommate which made things quite difficult after kinda getting off on the wrong foot because we they came in not long after us and we had several visitors at once. Then overnight between the two babies, they were awake most of the night. I am guessing I got a total of 3 hours of sleep but never for more than 1/2 hr - 45 minutes at one time! The second night I explained the situation to my nurses and they worked hard to keep roommates out for me to get a good night's sleep. Of course I was up 3 times for feedings and a couple of times her machines had alarms go off - but overall, it was a good night's sleep.
Please pray for Jordan's continued healing and recovery and for her to continue to tolerate the feedings. I also need prayer for sleep at night and energy during the day as feeding her every 3 hours for 24 hrs is going to be exhausting. The boys have been with my parents in Kalamazoo and will stay there until Monday to give me a chance to adjust to things with Jordan at home. Please pray also for them as they are not used to entertaining a 3 yr old and a 13 yr old at the same time (they usually have one at a time).
We started Jordan's feedings yesterday about noon. We started with 1 oz. every 3 hours. If she was able to handle it for 2 feedings, we increased the amount by 1/2 oz. We continued this every 3 hours. Jordan's goal was 24 oz of Pediasure which breaks down to 3 oz every 3 hours (8 feedings in a 24 hour period). Jordan reached her feeding goal of 3 oz at noon today and was able to go home. After the process of discharge instructions and emergency tube info, we finally left the hospital at 2:30pm.
We are now at home. Jordan had her first home-feeding at 3:45pm and then fell asleep and is still napping. I laid down for a brief nap after cleaning the tubes and am now getting caught up on everything at home. We will continue to feed Jordan every 3 hours until she sees the surgeon for her follow-up appt in 2 weeks. Then I will contact Dr. Burdo-Hartman's office and they will give me instructions on how to get Jordan onto 5 larger daytime only feedings. So for the next few weeks it will be like having a newborn at home with a couple of nighttime feedings every night. Derrick and I discussed her schedule and think that we can get it to where I will only have to get up 2 times per night (of course, that doesn't include all the times Conner might be up and need to be put back in bed...) At this point, we need to take it slow during the feedings, so they still take about 15-20 minutes each. After she becomes more comfortable with them, we should be able to increase the speed of the feed so it should only be 10 minutes or so.
We are so relieved that Jordan made it through surgery and recovery so quickly. Several of the nurses commented on how well she tolerated the feedings and how her overall recovery was quicker than many G-tube patients. A couple of the nurses took quite a liking to Jordan and would just hang out in the room and play with her! I was very happy with everyone at DeVos Children's Hospital.
Overall, the stay in the hospital was great! The nurses were wonderful - I never had one that I didn't like. Our first night we had a roommate which made things quite difficult after kinda getting off on the wrong foot because we they came in not long after us and we had several visitors at once. Then overnight between the two babies, they were awake most of the night. I am guessing I got a total of 3 hours of sleep but never for more than 1/2 hr - 45 minutes at one time! The second night I explained the situation to my nurses and they worked hard to keep roommates out for me to get a good night's sleep. Of course I was up 3 times for feedings and a couple of times her machines had alarms go off - but overall, it was a good night's sleep.
Please pray for Jordan's continued healing and recovery and for her to continue to tolerate the feedings. I also need prayer for sleep at night and energy during the day as feeding her every 3 hours for 24 hrs is going to be exhausting. The boys have been with my parents in Kalamazoo and will stay there until Monday to give me a chance to adjust to things with Jordan at home. Please pray also for them as they are not used to entertaining a 3 yr old and a 13 yr old at the same time (they usually have one at a time).
Thursday, August 21, 2008
Successful Surgery!!
Jordan's surgery went well today. She has been running a slight fever and still seems quite uncomfortable but the pain meds help quite a bit. She doesn't sleep much when laid in the crib and is much better when I cuddle and hold her. It might be a long night, but I'm not complaining that I get to spend the next few days cuddling my baby girl without having to chase Conner or get Mak to do some chores. Please continue to pray for her healing and recovery and that when we start feedings tomorrow that they go well. The surgeon is thinking that we could go home as early as Saturday! I will try to update again soon.
Tuesday, August 19, 2008
Jordan's Surgery
Jordan is scheduled for her Nissen G-tube surgery on Thursday at 8:55am. The surgery is scheduled to take approximately 1 to 1 1/2 hrs. We will need to be there at 6:55am which will mean an early morning for all of us!! After Jordan has been discharged from recovery, she will be admitted to DeVos Children's Hospital and will be given a room for the next 3 days or so.
Derrick and I have somewhat mixed feelings about all of this. We are looking forward to feeding Jordan without having her cry, fuss, gurgle, and have food come out of her nose. She will be able to get the amount of nutrition her little body needs to grow and develop without concern for getting it into her safely. The time relief for me will be huge!! I currently spend over 3 hours a day feeding Jordan and I don't feed her when we are eating so it's a large portion of my day.
On the other hand, we have very normal concerns about our little baby going under anesthesia for an open surgical procedure. We know that there are always risks with this sort of thing and therefore are a little anxious about it.
Please be praying for Jordan with her upcoming surgery and for the Dr.'s and all of the medical staff that will be assisting with the procedure as well as Derrick and I and our whole family as we go through this process with her. Please also pray for her recovery and the stay for us in the hospital (I will be staying with her). I will try to find a way to update the blog from the hospital - hopefully they will have a computer with Internet access somewhere.
Thank you for all of your prayers for Jordan as we face this journey.
Derrick and I have somewhat mixed feelings about all of this. We are looking forward to feeding Jordan without having her cry, fuss, gurgle, and have food come out of her nose. She will be able to get the amount of nutrition her little body needs to grow and develop without concern for getting it into her safely. The time relief for me will be huge!! I currently spend over 3 hours a day feeding Jordan and I don't feed her when we are eating so it's a large portion of my day.
On the other hand, we have very normal concerns about our little baby going under anesthesia for an open surgical procedure. We know that there are always risks with this sort of thing and therefore are a little anxious about it.
Please be praying for Jordan with her upcoming surgery and for the Dr.'s and all of the medical staff that will be assisting with the procedure as well as Derrick and I and our whole family as we go through this process with her. Please also pray for her recovery and the stay for us in the hospital (I will be staying with her). I will try to find a way to update the blog from the hospital - hopefully they will have a computer with Internet access somewhere.
Thank you for all of your prayers for Jordan as we face this journey.
Friday, August 15, 2008
Discharged!
On Tuesday at Jordan's feeding therapy at MFB, Ellen informed me that she wanted to discharge her from therapy. She truly felt that there was nothing more she could do for probably 6 months or so. After getting the feeding tube next week, Jordan will have a week or so of no oral feeding and after that, Ellen felt the best thing to do was to only pleasure feed a few times a day a small amount (1-2 oz) just to keep her experiencing oral feeding. She said it will take around 6 months for any damage from her reflux to heal completely and for her to forget the discomfort she has felt and move forward with feeding therapy. She doesn't see Jordan accepting other textures and/or thicknesses well for quite a while and therefore, felt we should stop therapy.
I was kinda caught off guard by this. I expected maybe a month or so off to adjust to the tube feeding, but I figured we would be moving forward with trying to get her to eat well orally in the near future. I'm kinda bummed because I felt like Ellen and Jane were my biggest support system through this. I know that I am doing what is best for Jordan but it sure was comforting to know that I had an OT and RN that I could just call whenever I had any concerns. I asked if Ellen would be my therapist when Jordan started therapy again and she said I could request her, but it would be based on who is available. I would appreciate prayers that when therapy is needed that we could be with Ellen - she has been a huge part of this journey with me and I hope to be able to continue with her later.
I want to say a HUGE "Thank You!!" to both Ellen and Jane for all of the information, support, and encouragement they have given me during the past 4 months. I saw several other therapists during that time and I feel that I have been truly blessed to be put with Ellen. She seemed to care more about Jordan where the other therapists seemed to care more about the goals. I appreciate all of the people at Mary Free Bed Outpatient Therapy and all they have done for my little Jordan!!
I was kinda caught off guard by this. I expected maybe a month or so off to adjust to the tube feeding, but I figured we would be moving forward with trying to get her to eat well orally in the near future. I'm kinda bummed because I felt like Ellen and Jane were my biggest support system through this. I know that I am doing what is best for Jordan but it sure was comforting to know that I had an OT and RN that I could just call whenever I had any concerns. I asked if Ellen would be my therapist when Jordan started therapy again and she said I could request her, but it would be based on who is available. I would appreciate prayers that when therapy is needed that we could be with Ellen - she has been a huge part of this journey with me and I hope to be able to continue with her later.
I want to say a HUGE "Thank You!!" to both Ellen and Jane for all of the information, support, and encouragement they have given me during the past 4 months. I saw several other therapists during that time and I feel that I have been truly blessed to be put with Ellen. She seemed to care more about Jordan where the other therapists seemed to care more about the goals. I appreciate all of the people at Mary Free Bed Outpatient Therapy and all they have done for my little Jordan!!
Wednesday, August 6, 2008
Coming out her nose!!
Well, today we had another first with Jordan. When I was feeding her, it started coming out her nose! Now while it may seem kinda funny, the problem is that she seems to be developing more difficulty swallowing. While feeding her today (and sometimes yesterday) she started processing her food in her mouth and gurgling. It was almost like she was enjoying her food and moaning. Anyway, because of her swallowing difficulties, instead of swallowing the food, it was going into her nasal passages and coming out through her nose.
Please pray that Jordan will get past this and swallow her food normally. I know we only have 2 weeks until her surgery, but at this point, it can't go fast enough. We just want her to be able to get her nutrition safely without the concern of complications.
Please pray that Jordan will get past this and swallow her food normally. I know we only have 2 weeks until her surgery, but at this point, it can't go fast enough. We just want her to be able to get her nutrition safely without the concern of complications.
Wednesday, July 30, 2008
Appointment with the Surgeon
Today I took Jordan to meet the pediatric surgeon, Dr. Neil Uitvlugt. We discussed Jordan getting a G-tube and having a Nissen fundoplication. The tube will allow us to feed her without concern of safety or nutrition - we can give her the desired amount of nutrition in a safe manner. The Nissen procedure will block Jordan from refluxing and causing discomfort with the risk of aspiration. After over an hour of discussing Jordan's story and hearing about the procedure, Dr. Neil decided that Jordan was a candidate for the surgery. He felt that although she currently seems to be doing better with quantity and since she doesn't sound too bad at this point, it might not be necessary. However, if we don't move forward with it, but wait 6 months to see how she does, she might again have difficulties and then we are 6 month behind in providing her safe nutrition to help her with her physical and brain development that is so vital in these early years. If we have the procedure done, and she continues to get a portion of her nutrition by tube and a portion orally, we may be able to work through the swallowing difficulties more quickly without concern of nutrition levels.
Jordan is scheduled for surgery on August 21st. She will be in the DeVos Children's Hospital for about 3 days following the procedure. Please be praying for Jordan, our family, the Dr. and all other medical personnel that will be involved. Thank you!!
Jordan is scheduled for surgery on August 21st. She will be in the DeVos Children's Hospital for about 3 days following the procedure. Please be praying for Jordan, our family, the Dr. and all other medical personnel that will be involved. Thank you!!
Tuesday's MFB Therapy
Yesterday at Jordan's therapy she weighed in at 15 lbs 15 oz. That is her biggest gain since starting therapy!! She has gained 2 lbs since she was 9 months old (in 4 1/2 months). Basically, I explained to Ellen that she has done very well with the spoon feeding of the honey/pudding thick Pediasure and we only used the bottle at times when spoon feeding wasn't available. Since her quantity was up to 30-35 oz per day and she didn't sound too bad, they were very excited!
We discussed that since things were going well and she was getting the quantity desired by Burdo-Hartman's office, we would stick with what is working. Ellen is afraid to change anything at this point, since it is going so well and she never knows what to expect from Jordan.
We discussed that since things were going well and she was getting the quantity desired by Burdo-Hartman's office, we would stick with what is working. Ellen is afraid to change anything at this point, since it is going so well and she never knows what to expect from Jordan.
CRAWLING!!!
On Monday night as Derrick was walking in the door from work, Jordan started to crawl. She only took a few crawls a couple of different times throughout the night, but it was very exciting for us to see her figure out such a difficult cordination task. Now only 2 days later, she is figuring it out and proving to be very effective at getting herself into everything. Along with finding every little piece of paper, grass or dog hair, she even found her little wastbasket with her dirty diapers in it (I suppose it's time to invest in an actual diaper pail...)
One thing we have noticed is that she doesn't use her legs equally. She favors one and one stays tucked under her when she crawls. She also has a hard time keeping her hips in and so she looks like a little frog moving across the floor.
If I can figure out how to load video, I will post some soon!
One thing we have noticed is that she doesn't use her legs equally. She favors one and one stays tucked under her when she crawls. She also has a hard time keeping her hips in and so she looks like a little frog moving across the floor.
If I can figure out how to load video, I will post some soon!
Tuesday, July 29, 2008
Family Vacation and Therapy Last Week!
Last week our family was camping up north at Orchard Beach State Park in Manistee. We visited family and friends in Traverse City, Lake Ann, Suttons Bay and at Portage Lake Covenant Bible Camp in Onekama. It was a busy week full of lots of fun! Feeding Jordan was difficult at times, but because of our new Fisher Price Space-Saver Highchair we were able to bring it along and feed her wherever we were.
I actually drove back to Grand Rapids for Jordan's therapy on Tuesday and Ellen made a few changes to our feeding program. I told Ellen and Jane that Jordan has been refusing her bottle more and more and they decided that we need to stop using it as a feeding tool as much as possible. We are back to almost completely spoon feeding. I was supposed to start with the Pediasure (honey/pudding thickness) and spoon feed until she is tiring and then try a bottle until her first refusal and then switch to spoon feeding Pediasure (honey thickness). Yes, it's a lot of work, but the theory is that if she tires of the thicker Pediasure, we might be able to get a little more in by spoon if it's a little thinner.
What we found throughout the week is that Jordan loves to eat by spoon!! She almost never tired of the Pediasure (h/p) and we only occasionally had to go to the bottle and almost never the honey thickness. In fact, we found that Jordan would eat more than we felt was appropriate for her tiny little body and had to start cutting her off at mealtimes. I actually fed her 9 oz of Pediasure (h/p) in one feeding while sitting on the beach! Derrick and I decided that she might not know when to stop eating so we decided to limit her to 6 or 7 oz per feeding. We used the bottle only at times when I was unable to feed her by spoon or if it was extremely late and I needed to get her fed and in bed (spoon feeding is a 30 minute process). Overall, she was taking between 30-35 oz of Pediasure throughout the day!! That finally meets the nutritional needs designated by the Dr.!!
I actually drove back to Grand Rapids for Jordan's therapy on Tuesday and Ellen made a few changes to our feeding program. I told Ellen and Jane that Jordan has been refusing her bottle more and more and they decided that we need to stop using it as a feeding tool as much as possible. We are back to almost completely spoon feeding. I was supposed to start with the Pediasure (honey/pudding thickness) and spoon feed until she is tiring and then try a bottle until her first refusal and then switch to spoon feeding Pediasure (honey thickness). Yes, it's a lot of work, but the theory is that if she tires of the thicker Pediasure, we might be able to get a little more in by spoon if it's a little thinner.
What we found throughout the week is that Jordan loves to eat by spoon!! She almost never tired of the Pediasure (h/p) and we only occasionally had to go to the bottle and almost never the honey thickness. In fact, we found that Jordan would eat more than we felt was appropriate for her tiny little body and had to start cutting her off at mealtimes. I actually fed her 9 oz of Pediasure (h/p) in one feeding while sitting on the beach! Derrick and I decided that she might not know when to stop eating so we decided to limit her to 6 or 7 oz per feeding. We used the bottle only at times when I was unable to feed her by spoon or if it was extremely late and I needed to get her fed and in bed (spoon feeding is a 30 minute process). Overall, she was taking between 30-35 oz of Pediasure throughout the day!! That finally meets the nutritional needs designated by the Dr.!!
Thursday, July 17, 2008
Not Doing So Well ... Again...
Well after 2 weeks of Jordan sounding very clear and thinking that she was getting better at swallowing, Jordan is now back to sounding VERY wet and gurgly. We first noticed on Friday and by Saturday she was extremely congested. In fact, my brother was in town and was holding her and wondered if she had a bad cold because of the rattle in her chest. We never changed anything other than to increase her Zantac which should clear up any reflux she may still be having. We are baffled why she all of a sudden took a turn for the worse.
At therapy on Tuesday, Ellen was very concerned at how wet she was and the fact that she wouldn't cough. We slowly tried to feed her Pediasure thickened to nectar, honey, and honey/nectar consistency to see if it made a difference, but it didn't seem to change anything. We also tried juice at nectar and honey/pudding consistency, but again, no change. Finally after about 1/2 hr of feeding her she had quite a few hard coughs and cleared it all out. Nurse Jane was amazed at what a difference the cough made. This tells us that it isn't deep in her lungs but most likely in her airway and throat and maybe a little bit in her upper lungs. This is probably why she isn't getting sick very often.
By the end of therapy, Ellen sat and just looked at Jordan for several minutes trying to figure out what to do with her. She said she wished she could feed her in front of an x-ray machine every week because she's a different patient every week and she just never knows what is going on inside when we are feeding her. This week we are trying feeding her 2-3 oz of honey thickened Pediasure by spoon with intermittent honey thickened juice. Then giving her a bottle with honey/pudding thickened Pediasure to fill her up. Ellen said that Dr. Burdo-Hartman said that Jordan needs to fail at therapy before she will approve the G-tube and that it looks like that might be what we are facing at this point.
Please keep little Jordan in your prayers - we need her to continue to take a good quantity of food but we need to get it in her safely. Also please pray that she doesn't get sick - because she isn't coughing as often, she is more at risk for aspirating not only when eating, but just from normal breathing because of all the gunk in her airway.
At therapy on Tuesday, Ellen was very concerned at how wet she was and the fact that she wouldn't cough. We slowly tried to feed her Pediasure thickened to nectar, honey, and honey/nectar consistency to see if it made a difference, but it didn't seem to change anything. We also tried juice at nectar and honey/pudding consistency, but again, no change. Finally after about 1/2 hr of feeding her she had quite a few hard coughs and cleared it all out. Nurse Jane was amazed at what a difference the cough made. This tells us that it isn't deep in her lungs but most likely in her airway and throat and maybe a little bit in her upper lungs. This is probably why she isn't getting sick very often.
By the end of therapy, Ellen sat and just looked at Jordan for several minutes trying to figure out what to do with her. She said she wished she could feed her in front of an x-ray machine every week because she's a different patient every week and she just never knows what is going on inside when we are feeding her. This week we are trying feeding her 2-3 oz of honey thickened Pediasure by spoon with intermittent honey thickened juice. Then giving her a bottle with honey/pudding thickened Pediasure to fill her up. Ellen said that Dr. Burdo-Hartman said that Jordan needs to fail at therapy before she will approve the G-tube and that it looks like that might be what we are facing at this point.
Please keep little Jordan in your prayers - we need her to continue to take a good quantity of food but we need to get it in her safely. Also please pray that she doesn't get sick - because she isn't coughing as often, she is more at risk for aspirating not only when eating, but just from normal breathing because of all the gunk in her airway.
Friday, July 11, 2008
Jordan's Upcoming Appt. with the Surgeon
Jordan is scheduled to meet with Dr. Neil Uitvlugt, a pediatric surgeon on Wednesday, July 30th. With Dr. Burdo-Hartman's recommendation, we will discuss with him Jordan's need for a gastric feeding tube (G-tube). This will enable us to provide her adequate nutrition without worrying about getting it into her safely. At that point, we will be able to work more on her therapy and teaching her how to swallow properly.
This Week's Therapy
This week at feeding therapy, Jordan was still sounding pretty good so Ellen thought she would try to mix things up a bit. She took some applesauce and put it through the blender to make it really smooth and then added Simply Thick to make it the consistency Jordan's food is normally made. After only 2 bites, she was sounding quite wet and gurgly. We gave her some more thickened Pediasure and tried a few more bites of applesauce, but again she didn't sound too good. Ellen decided that it wasn't a good idea to introduce any new foods into her diet at this time. Jordan will continue on thickened Pediasure and some thickened juices (any clear 100% juice).
Just to try another idea, Ellen had me feed Jordan 3 Tablespoons by spoon (instead of 2) and then try the bottle. When I tried it at therapy, Jordan had also had some juice and applesauce and by the time she got to the bottle, she only took between 1/2 to 1 oz. Since then I have continued to try at home and have had some luck, although her total intake amounts don't seem to change. If I give her an additional ounce by spoon, she normally takes 1 less ounce by bottle. I guess it's just a matter of figuring out if the spoon or bottle is a safer way to provide her nutrition.
Just to try another idea, Ellen had me feed Jordan 3 Tablespoons by spoon (instead of 2) and then try the bottle. When I tried it at therapy, Jordan had also had some juice and applesauce and by the time she got to the bottle, she only took between 1/2 to 1 oz. Since then I have continued to try at home and have had some luck, although her total intake amounts don't seem to change. If I give her an additional ounce by spoon, she normally takes 1 less ounce by bottle. I guess it's just a matter of figuring out if the spoon or bottle is a safer way to provide her nutrition.
Tuesday, July 8, 2008
The Dr. Finally Calls!!
After waiting 5 days to hear from Dr. Burdo-Hartman, she finally called today! She essentially described Jordan as having dysphasia (swallowing problems), small size, reflux, low muscle tone, developmental delays, and some other markers (ie: ear tags, simian crease, etc). She said that the next step she wants to take is to have Jordan meet with Genetics - Dr. Toriello is the geneticist in Grand Rapids. She wants to see if there is something underlying that explains things to see if we should approach her in a different manner. She will order chromosomal studies and other metabolic screenings. I will have to collect her urine and take it to the lab where she will have some blood drawn. She said that this is level 1 and we will see if anything comes up and see where we go from there. If there is an chromosomal abnormality, that will help us determine what road we want to go down - it helps to have a name because it will help us know what she may have issues with in the future.
She also wants to increase the dosing of her Zantac since she is currently on a low dose to get her up to a medium dose to relieve any discomfort she may still be having.
She said that Jordan is currently in the gray zone for feeding because she has recently decided to step things up, but for a long time has not been eating. She wants Jordan to see the surgeon to discuss a G-tube because this current method of feeding her is not a long-term solution, but if it is a stepping stone to improving her feeding, we may not need to go through with it. She wants us to stick with what we're doing right now while we work it through. She said it sometimes takes a few weeks to get in to see the surgeon and then a few weeks to get in to the hospital for the surgery.
Please pray for Jordan as she may be having surgery at some point and also for us as we prepare to learn of any chromosomal abnormalities and/or metabolic disorders.
She also wants to increase the dosing of her Zantac since she is currently on a low dose to get her up to a medium dose to relieve any discomfort she may still be having.
She said that Jordan is currently in the gray zone for feeding because she has recently decided to step things up, but for a long time has not been eating. She wants Jordan to see the surgeon to discuss a G-tube because this current method of feeding her is not a long-term solution, but if it is a stepping stone to improving her feeding, we may not need to go through with it. She wants us to stick with what we're doing right now while we work it through. She said it sometimes takes a few weeks to get in to see the surgeon and then a few weeks to get in to the hospital for the surgery.
Please pray for Jordan as she may be having surgery at some point and also for us as we prepare to learn of any chromosomal abnormalities and/or metabolic disorders.
Friday, July 4, 2008
Thursday's BIG Dr. Appointment
We survived Jordan's BIG evaluation at the Helen DeVos Children's Hospital Gerber Center for Infant Development and Nutrition. Jordan weighed in at 15lb 2 oz and was 26 1/4 in long. When she was charted - she was still significantly below the 3rd percentile. We had to wait a little while before we were seen because the social worker was on vacation and the dietitian had flooding and power problems at home from the storm the night before. 
We finally sat down with Dr. Mastin the psychologist and discussed with her what we were most concerned with and what we would like to see accomplished through this program. She asked lots of questions and answered some of ours as well. During this conversation, Jessica, the occupational therapist came in and we fed Jordan so that she could see what is going on with her. Jordan has been doing very well the past few days and so there wasn't much wet and gurgleyness with her eating but the fact that she is only able to eat honey/pudding-thick Pediasure by both spoon and bottle as well as the reports from Ellen hopefully gave her an idea of what we have been going through with her. 
They left and Jordan was finishing her bottle when Dr. Burdo-Hartman came in and began her evaluation. She is a pediatric neurodevelopment specialist and talked with us about some things and then played with Jordan and checked her out some of her physical characteristics and development. 
After her evaluation, she said that they would all sit down together and discuss Jordan and we would receive a phone call from her that night with their findings. Unfortunately, she never called... I was kinda hoping to hear from her this morning but due to the 4th of July holiday, I will probably have to wait until Monday to get any information. 
Wednesday, July 2, 2008
Update
On Tuesday I received a call from Dr. Koetsier, Jordan's pediatrician. He had the report of the MRI and said that it basically stated that there was mildly diminished white matter and that it was indicative of cerebral palsy. This confirms what Dr. VanDyke said several weeks ago. We hope to get more details on this report at her appointment tomorrow.
At today's MFB therpay, Jordan had gained weight and grown in length - she was 15lb 2 oz and 26 3/4 in. That put her at about 3% for length but still significantly below the chart for weight. Jordan has been doing very well with quantity and has been doing okay with safety - she has taken between 18-27 oz of thickened Pediasure per day for the past week. We are using a very unusual method of feeding - Ellen said that she has never had to do this and that hopefully we will be able to work something out so that I don't have so much work invested in feeding her - it takes about 1/2 hr 6 times a day (not at our meal times). We start with 2 oz thickened Pediasure and 1 oz of thickened apple juice by spoon - 2 to 3 spoons of P and then a spoon of AJ to clear her out - also anytime she sounds like she is getting wet and gurgly. Then we move to a bottle with thickened Pediasure - she usually takes from 2-4 oz. This gives Jordan the ability to eat from 2 separate methods before fatiguing with each.
Tomorrow is Jordan's BIG appointment with Dr. Burdo-Hartman. Our appointment is at 1:15 and she will be there for 2 to 3 hours. Derrick has the afternoon off so he can be with us for this evaluation. Dr. B-H is a neurodevelopmental specialist - she will also be evaluated by a behavioral psychologist, occupational therapist, speech therapist, dietitian, and nurse practitioner. This multidisciplinary approach will allow them to together come up with a overall diagnosis and treatment plan that should cover all areas of Jordan's development. My biggest concern of this appointment is that Jordan normally takes a nap around 2pm. I will try to get her to take a late, long morning nap before heading to the appointment so she's able to make it through the appt.
Please pray for Jordan for this appointment as it is a very important step in determining what is going on with her and what we need to do to help her. Please pray also for Derrick and me, that we are able to understand and retain the information that we are given. And finally, pray for my parents as they have Mak and Conner today and tomorrow to help us to not have to worry about them during this important time.
At today's MFB therpay, Jordan had gained weight and grown in length - she was 15lb 2 oz and 26 3/4 in. That put her at about 3% for length but still significantly below the chart for weight. Jordan has been doing very well with quantity and has been doing okay with safety - she has taken between 18-27 oz of thickened Pediasure per day for the past week. We are using a very unusual method of feeding - Ellen said that she has never had to do this and that hopefully we will be able to work something out so that I don't have so much work invested in feeding her - it takes about 1/2 hr 6 times a day (not at our meal times). We start with 2 oz thickened Pediasure and 1 oz of thickened apple juice by spoon - 2 to 3 spoons of P and then a spoon of AJ to clear her out - also anytime she sounds like she is getting wet and gurgly. Then we move to a bottle with thickened Pediasure - she usually takes from 2-4 oz. This gives Jordan the ability to eat from 2 separate methods before fatiguing with each.
Tomorrow is Jordan's BIG appointment with Dr. Burdo-Hartman. Our appointment is at 1:15 and she will be there for 2 to 3 hours. Derrick has the afternoon off so he can be with us for this evaluation. Dr. B-H is a neurodevelopmental specialist - she will also be evaluated by a behavioral psychologist, occupational therapist, speech therapist, dietitian, and nurse practitioner. This multidisciplinary approach will allow them to together come up with a overall diagnosis and treatment plan that should cover all areas of Jordan's development. My biggest concern of this appointment is that Jordan normally takes a nap around 2pm. I will try to get her to take a late, long morning nap before heading to the appointment so she's able to make it through the appt.
Please pray for Jordan for this appointment as it is a very important step in determining what is going on with her and what we need to do to help her. Please pray also for Derrick and me, that we are able to understand and retain the information that we are given. And finally, pray for my parents as they have Mak and Conner today and tomorrow to help us to not have to worry about them during this important time.
Thursday, June 26, 2008
Jordan's MRI
Jordan and I arrived at Spectrum for her MRI at noon. 
Jordan's wrist band
Her nurse, Sherri, took us back to the pediatric sedation room and basically explained what would happen over the course of the next few hours. A few minutes later, Dr. Kim Winterhalter, the Dr. (who I thought was a nurse) I had spoken on the phone with a few days earlier, came in. She talked with me for a few minutes about Jordan and her referral from Dr. VanDyke and her feeding issues. She wanted to listen to Jordan’s chest to hear her rattle sound. She was concerned that the traditional method of oral sedation might not be strong enough to keep her asleep if she started coughing. She was also concerned to go with the IV method because it would put her in a deeper sleep and might be so deep that she wouldn’t cough if she needed to and would be more likely to aspirate. After processing things, she decided to start with a medicine that would reduce her secretions/mucus and hopefully reduce the rattle in her chest. At 12:55 they gave her Robinul and waited about 20 minutes. 
Playing while waiting for the medicine to clear her chest.
She listened again to her chest and decided it sounded better and they would move forward with the oral sedation. At 1:25 they gave her Chloral. Jordan fell asleep within a few minutes because it was naptime anyway. They waited 20 minutes and checked on her and she was sound asleep in my arms. 
Sweet Dreams!!
I laid her in the bed they use to transport her to the room for the MRI and she woke up. Instead of falling back to sleep, she started kicking her legs and looking all around the room. Sherri left and gave her a few minutes to settle down and fall back asleep, but she didn’t. I tried to pick her back up and get her back to sleep, but she decided to give her another small dose of Chloral at 1:55. She fell sound asleep and this time Sherri was able to get the actual table used in the MRI and bring it to the room and I placed Jordan directly on that table and Sherri put in ear plugs and they took her away at 2:15. 
On the MRI table w/ earplugs in
Sherri returned with a sleepy Jordan in her arms at 3 and I took her and held her for a little while. 
Sleepy Jordan - time to wake up!
I changed her diaper and she woke up briefly a few times, but let her sleep until 4. At that point, we got her awake and decided to try some liquids. I put her in her stroller and gave her 1 oz thickened apple juice by spoon. She seemed to be quite fussy but I figured she was still very sleepy and very hungry. I waited a few minutes and then gave her a bottle of thickened Pediasure – she took 6 oz and wanted more! I decided that was enough for this feeding and I would just continue to feed her every 2 hours until bedtime. Jordan was discharged at 5 and we returned home. It was a very long day but I look forward to hearing what Dr. Burdo-Hartman has to say about it next week!
Wednesday, June 25, 2008
Jordan's MRI Tomorrow
Jordan will be going in for an MRI of her brain tomorrow. This was recommended by Dr. VanDyke, the pediatric neurologist and ordered by her pediatrician, Dr. Koetsier. She will be unable to have anything to eat or drink after 7:30 am. We will need to be at the hospital at noon for a 1:30 appointment. She will be sedated for the procedure. Derrick will be unable to be there due to limited vacation time and because he will be attending her evaluation next Thursday with Dr. Burdo-Hartman and her team as well as needing to have surgery on his other foot before the end of the year (he had the first one done in January). Please pray that Jordan is okay without eating for that length of time - dehydration is our biggest concern for her on a daily basis and removing all liquids for 9 hrs or so increases her risk. Also pray for the radiologist and nurses that will be performing the procedure - that everything goes smoothly and they see what they want to. Also pray for our family as we will all be doing different things - Derrick will be at work, I will be with Jordan, Mak will be doing some chores around the house to get ready to go camping for the weekend, and Conner will be at our house with a babysitter. It is also Derrick's Birthday and hopefully we will be able to celebrate it at some point later in the day!
Today's MFB Therapy
At today’s MFB therapy, Ellen and Jane were both encouraged since Jordan took 24 ½ oz of Pediasure yesterday. We began feeding her by spoon and she did well taking a few spoons of Pediasure and then a spoon of apple juice. After about 1-oz pediasure, she seemed to tire of spoon-feeding and she started sucking on her fingers and didn’t have any more interest in the food. We brought out her bottle and she drank about 2 oz from it before she got tired and didn’t want any more. More than anything we discovered that Jordan knows when she is hungry but may not be able to determine when she is full. She tires of eating before she is full and therefore may not understand a "full" feeling. Ellen encouraged me to be careful not to go over 5-6 oz total per meal with her for now until she is regularly eating that much.
Ellen also worked with her on some tongue therapy – during her spoon-feeding she noticed that Jordan’s tongue was very active on the left side of her mouth but she never used it on the right side. Ellen used her finger to try to encourage her to move her tongue to the right side. Jordan thought that it was fun to play with Ellen like that and eventually she did move her tongue to the right side a couple of times. Ellen said that right now we need to focus more on nutrition and we can do therapy only when she’s getting her nutrition.
As far as the MRI tomorrow, Jane said that if I wake Jordan up once the night before for a feeding and once the night after for a feeding, that should replace 2 of the 3 feedings she will miss and she should be okay. She also said that if on Friday, I have some concerns of dehydration, or she doesn’t start eating her normal quantity, I may want to call my pediatrician and they may have me go into the hospital to have an IV of fluids. They said that the radiologist is required to report on the MRI within 24 hours and that even if the report is not given to Dr. Burdo-Hartman before Jordan’s appt next week, she should be able to bring it up on their computer system and read it.
Ellen also worked with her on some tongue therapy – during her spoon-feeding she noticed that Jordan’s tongue was very active on the left side of her mouth but she never used it on the right side. Ellen used her finger to try to encourage her to move her tongue to the right side. Jordan thought that it was fun to play with Ellen like that and eventually she did move her tongue to the right side a couple of times. Ellen said that right now we need to focus more on nutrition and we can do therapy only when she’s getting her nutrition.
As far as the MRI tomorrow, Jane said that if I wake Jordan up once the night before for a feeding and once the night after for a feeding, that should replace 2 of the 3 feedings she will miss and she should be okay. She also said that if on Friday, I have some concerns of dehydration, or she doesn’t start eating her normal quantity, I may want to call my pediatrician and they may have me go into the hospital to have an IV of fluids. They said that the radiologist is required to report on the MRI within 24 hours and that even if the report is not given to Dr. Burdo-Hartman before Jordan’s appt next week, she should be able to bring it up on their computer system and read it.
Yesterday's Mary Free Bed Therapy
Today’s therapy at MFB started with Ellen being very concerned with the way Jordan sounded. She has been very wet and rattly sounding for a week or so. I asked about Jordan’s MRI and her not being able to have anything to eat/drink after 7:30 am on Thursday. Nurse Jane was concerned that she may dehydrate if not allowed to have an iv and suggested that I call the nurses line listed on the back of the brochure. Ellen and Jayne talked while Nurse Jane listened to her lungs/airway. Then they came over and had an informational discussion about feeding tubes with me. They explained that they don't really have many more ideas of what to do to safely feed Jordan. Since her appt with Dr. Burdo-Hartman is next week, they hope to avoid her having to go through all of these same steps through their program so they will be providing Dr. Burdo-Hartman with updated progress information explaining all of the different things they have tried and the ways they haven’t worked. They explained that an NG-tube would go through her nose and that it would be in for at least 2 months. It would make it even more difficult for her to swallow but that if B-H feels that they can get her eating safely in that time frame, she might go with it because it is less invasive. If they feel she needs a long-term solution, they may go with a G-tube which would require surgery and would be in for at least 6 months. They will provide all updated info to Dr. B-H before next week’s appointment so that she will know where Jordan has been for the past few months.
Jayne, the dietitian explained that after we see Dr. B-H, we will be served through the dietitian in their program so she would no longer attend Jordan’s therapy sessions.
Ellen decided to go back to spoon-feeding. We used a 1 oz medicine cup with honey/pudding thick Pediasure and within a few spoons, Jordan was sounding wetter than before. Wondering if the cause was a reaction to dairy, Ellen thickened some apple juice and we used a spoon of apple juice after a few spoons of Pediasure. Jordan loved the taste of the apple juice and was sucking it all out of her mouth. She was VERY hungry and wanted sooo badly to eat, but wasn’t swallowing well so we had to go very slowly. After about 2 oz of Pediasure by spoon we switched over to the bottle. Ellen decided to take out the valve system of the Dr. Brown’s bottle because it seemed to be getting in the way of the thick pediasure getting into the nipple. This was causing much more work for Jordan to eat. Jordan took just under 2 oz fairly quickly and would have had more. Ellen recommended that I follow this same procedure for 5-6 feedings/day – start w/ spoon feeding Pediasure and apple juice and then switch over to a bottle.
We have therapy again tomorrow so we will see if the works better for the next day...
Jayne, the dietitian explained that after we see Dr. B-H, we will be served through the dietitian in their program so she would no longer attend Jordan’s therapy sessions.
Ellen decided to go back to spoon-feeding. We used a 1 oz medicine cup with honey/pudding thick Pediasure and within a few spoons, Jordan was sounding wetter than before. Wondering if the cause was a reaction to dairy, Ellen thickened some apple juice and we used a spoon of apple juice after a few spoons of Pediasure. Jordan loved the taste of the apple juice and was sucking it all out of her mouth. She was VERY hungry and wanted sooo badly to eat, but wasn’t swallowing well so we had to go very slowly. After about 2 oz of Pediasure by spoon we switched over to the bottle. Ellen decided to take out the valve system of the Dr. Brown’s bottle because it seemed to be getting in the way of the thick pediasure getting into the nipple. This was causing much more work for Jordan to eat. Jordan took just under 2 oz fairly quickly and would have had more. Ellen recommended that I follow this same procedure for 5-6 feedings/day – start w/ spoon feeding Pediasure and apple juice and then switch over to a bottle.
We have therapy again tomorrow so we will see if the works better for the next day...
Monday, June 23, 2008
Early On / Ken-O-Sha Therapy
On Friday, Betsy came over for Jordan's therapy. She was happy with the progress since we last saw her in the end of May. Jordan is much more stable while sitting and is even trying to reach more for things. She is also learning to move her legs around and twist to reach, sometimes resulting in her turning herself around! Although I wouldn't quite call her mobile, she's definitely on her way!! Last week she also started to bear weight on her legs for a minute or so at a time. She will even hold onto (with a death grip so she doesn't fall) an object and stand there on her own for a short time! Her ankles, knees, and hips are all locked so it's not the best "standing" technique - but it's a step in the right direction! The most interesting thing Betsy observed is that it is common for kids to stand on their toes, but Jordan stands on her right heel. We will have to see what develops from this. I have some pics from her therapy on Friday - I will post them soon!
Thursday, June 19, 2008
Pictures and the Doctor
This morning we met my friend Stacey at Hagar Park in Jenison to get some pics of Jordan. We were both afraid it was going to be COLD but because the sun was out, it was about 65 degrees. Although I wanted pics of her in a cute sundress, we started in jeans and a hoodie - eventually she ended up in her cute little dress. Jordan was more interested in whatever she was sitting in (sand, wood, chips, grass, flowers) and wasn't so much in the mood for smiling, but I think Stacey got a few good shots. She should have them posted on her webpage soon: www.staceyclackphotography.blogspot.com If you look under May 5, you will see the ones she took of Conner a while back. She is awesome!!!
After that, we went to the Dr. for her 1-year check up. Dr. Koetsier basically told me that even though I want answers about what to expect, there is no guarantee with anything. We are on a journey with Jordan and we will continue to have evaluations, tests, and therapy and we might find out more, but there are no guaranteed answers. He said that as parents we will want to do everything we can for her but sometimes it is best to not do anything. She might reach a point where therapy is no longer going to be beneficial to her and there are no more tests that can be done and we need to just enjoy her for who she is. As for now, he ordered the MRI and she is scheduled for next Thursday 6/26 at 1:30pm. I am very interested to see what this might show...
After that, we went to the Dr. for her 1-year check up. Dr. Koetsier basically told me that even though I want answers about what to expect, there is no guarantee with anything. We are on a journey with Jordan and we will continue to have evaluations, tests, and therapy and we might find out more, but there are no guaranteed answers. He said that as parents we will want to do everything we can for her but sometimes it is best to not do anything. She might reach a point where therapy is no longer going to be beneficial to her and there are no more tests that can be done and we need to just enjoy her for who she is. As for now, he ordered the MRI and she is scheduled for next Thursday 6/26 at 1:30pm. I am very interested to see what this might show...
Wednesday, June 18, 2008
Today's MFB Therapy
Today at Jordan’s therapy at MFB, Deb started her with a bottle of Pediasure (8oz w/ 3 packets of Simply Thick-Honey) through a stage 3 nipple. She drank pretty well and showed signs of wetness a couple of times but never coughed. She took around 4 oz in 20 minutes with some breaks in between. We then put her in the highchair and let her play with some teething toys encouraging her to stick out her tongue and move it from side to side. Deb encouraged me to do this at home with her and told me if I have any concerns to call Ellen.
It was a very different therapy because we had just been their yesterday and Jordan was still doing well with the bottle we started then. Hopefully she will continue to drink well through next week's appt. Otherwise, I will have to go back to spoon feeding her.
It was a very different therapy because we had just been their yesterday and Jordan was still doing well with the bottle we started then. Hopefully she will continue to drink well through next week's appt. Otherwise, I will have to go back to spoon feeding her.
Tuesday, June 17, 2008
MFB Therapy
Today I was unsure what to expect at therapy. Jordan had a great week...until yesterday. She drank around 20 oz per day of thickened Pediasure and seemed to be peeing a little bit more. However, yesterday she started sounding very wet and gurgly when drinking and coughing lots during and following her bottles. Well, she weighed in at 14lbs. 14 oz. which is a good gain! However trying to figure out how and what to feed that little girl was a challenge!
Ellen and Deb worked together and tried the thickness we have been using with the Y-cut nipple (what we have been using) and she again, sounded very wet with it. They thickened the Pediasure even more (it was VERY thick!!) and used the Y-cut nipple - it was so thick that she was no longer wet sounding but it required way too much effort on Jordan's part and she fatigued very quickly (only after a few sips) and didn't want anymore. Finally, we tried going back to the original thickness (somewhere between honey and pudding) and used a stage 3 nipple. Ellen also let her suck on it like a regular bottle taking a break after a minute or so to give her a chance to clear anything. This seemed to work for her. If she has any problems after trying this, I will just spoon feed her the Pediasure.
Jane the nutritionist and Jane the dietitian both decided that in order to give Jordan the nutrition and hydration her body needs we need to stop thickening with pudding/applesauce/rice cereal. They want her to get more Pediasure and less other stuff. They want me to start using "Simply Thick" a tasteless, calorie-free thickening gel. Unfortunately the stuff costs a ton!!! A case of 100 packets is available at Gordan Foods for approx $60. Although it seems like this would last a while, Jordan needs 3 packets for every 8 oz of Pediasure and she should be getting 3 bottles of Pediasure a day. This comes to about $5.50 a day or $165 per month!! Although it's not quite as expensive as the Pediasure, it's definitely a cost that we weren't planning on. I will check to see if WIC will cover this also.
We have another appointment with Ellen and Deb tomorrow morning so it will give us a chance to see what else we might need to do.
Ellen and Deb worked together and tried the thickness we have been using with the Y-cut nipple (what we have been using) and she again, sounded very wet with it. They thickened the Pediasure even more (it was VERY thick!!) and used the Y-cut nipple - it was so thick that she was no longer wet sounding but it required way too much effort on Jordan's part and she fatigued very quickly (only after a few sips) and didn't want anymore. Finally, we tried going back to the original thickness (somewhere between honey and pudding) and used a stage 3 nipple. Ellen also let her suck on it like a regular bottle taking a break after a minute or so to give her a chance to clear anything. This seemed to work for her. If she has any problems after trying this, I will just spoon feed her the Pediasure.
Jane the nutritionist and Jane the dietitian both decided that in order to give Jordan the nutrition and hydration her body needs we need to stop thickening with pudding/applesauce/rice cereal. They want her to get more Pediasure and less other stuff. They want me to start using "Simply Thick" a tasteless, calorie-free thickening gel. Unfortunately the stuff costs a ton!!! A case of 100 packets is available at Gordan Foods for approx $60. Although it seems like this would last a while, Jordan needs 3 packets for every 8 oz of Pediasure and she should be getting 3 bottles of Pediasure a day. This comes to about $5.50 a day or $165 per month!! Although it's not quite as expensive as the Pediasure, it's definitely a cost that we weren't planning on. I will check to see if WIC will cover this also.
We have another appointment with Ellen and Deb tomorrow morning so it will give us a chance to see what else we might need to do.
Monday, June 16, 2008
Happy Birthday Jordan!!!
Jordan celebrated her 1st Birthday on Thursday, June 12th!!!
We spent the morning at a playdate with our MOPS group. She had lots of fun playing with her "boyfriend" Dylan! He's a hunk of a guy who is 2 1/2 months younger than her - although you would never know by looking at him!!
After an afternoon nap, Grandma and Grandpa came up from Kalamazoo to celebrate! Jordan has lots of new toys to play with and Conner loves them too! She enjoyed a bowl of pink thickened Pediasure showing off her eating skills!!! We had a great day celebrating Jordan!
We spent the morning at a playdate with our MOPS group. She had lots of fun playing with her "boyfriend" Dylan! He's a hunk of a guy who is 2 1/2 months younger than her - although you would never know by looking at him!! After an afternoon nap, Grandma and Grandpa came up from Kalamazoo to celebrate! Jordan has lots of new toys to play with and Conner loves them too! She enjoyed a bowl of pink thickened Pediasure showing off her eating skills!!! We had a great day celebrating Jordan!
Wednesday, June 11, 2008
Jordan is Drinking!!!
Today has been a very good day for Jordan's drinking. Throughout the day she had 5 bottles of 4 oz of Pediasure thickened with yogurt, pudding, and cereal to make it pudding consistency. All but 1 of those bottles she finished in about 5 minutes by using the technique of giving her 1 sip at a time! The one she didn't finish was right before lunch so I thickened it with some barley cereal and spoon fed her the rest of it. That's 20 oz of thickened Pediasure full of nutrition for my baby girl!!
I am now hoping for a good night's sleep without worrying about Jordan so much!!!
...of course, we need to figure out how to keep Conner asleep all night because I spent 1 1/2 hours last night trying to get him to stay in bed between 2-3:30 am!!! Funny thing is that I heard his little footsteps but thought he went back to bed until Derrick found him on the living room couch this morning!! This happened a few nights ago also so it seems to be a new trend...
I am now hoping for a good night's sleep without worrying about Jordan so much!!!
...of course, we need to figure out how to keep Conner asleep all night because I spent 1 1/2 hours last night trying to get him to stay in bed between 2-3:30 am!!! Funny thing is that I heard his little footsteps but thought he went back to bed until Derrick found him on the living room couch this morning!! This happened a few nights ago also so it seems to be a new trend...
Tuesday, June 10, 2008
MFB Therapy
I was very unsure of what today's therapy would bring since Jordan has gotten such a low amount of fluids for the past several days (less than 10oz per day). Surprisingly she actually gained a little weight - she was up to 14lb 8 oz. There was quite a bit of concern with the possibility of dehydration and lack of nutrition.
Ellen tried a new (but actually old) sippy cup with honey thick Pediasure. Jordan sounded very wet and gurgley. She thickened it to a pudding consistency and she did okay with it when given just a sip at a time.
We then worked on a bottle. Ellen used a Dr. Brown's bottle with a Y-cut nipple and pudding thick Pediasure. Again, we only let Jordan take one sip at a time. She actually did quite well with it and didn't sound too wet. After she started refusing the bottle we tried spoon feeding her and she took a few spoonfuls before she didn't want anymore. Over a period of about 30 minutes she took almost 3 oz!
The nutritionist and dietitian agreed that Jordan needs to stick to a diet of Pediasure thickened to the appropriate consistency with pudding, yogurt, and cereal. I will drop her fruit and veggie purees for now so that we ensure she is getting the most possible nutrition, calories, and liquids in as little amount of food as possible.
They feel that Jordan has started on a downward spiral - she is getting less nutrition and her energy level is weakening and so she has less energy to put towards eating, thus giving her less nutrition. Her therapy has now been increased to 2x/wk and they will monitor her closely. They want to get her in to see the specialist before July 3, but she is out of town for 2 weeks. If necessary, they may have her see a different specialist in the same program at DeVos Children's Hospital.
As I was leaving today I asked Ellen about the feeding tube and she said she was pretty confident Jordan would need one to get her the nutrition she needs. Currently her therapy consists of finding the safest way to get her as much nutrition as possible and they can't even work with her on building the skills she needs to learn.
The past few days have been quite stressful and somewhat overwhelming for me. I am constantly concerned about what Jordan is consuming and how much and often she has wet diapers. I know that Jordan is being monitored weekly but a day seems like forever when she's not drinking and not peeing! Please pray that Jordan receives the nutrition she needs to stay healthy and for my stress level through all of this. I don't feel like I can keep up with all of the day-to-day work of being a wife and mom to 3 kids. Also pray for Mak and Conner in all of this - I don't want them to feel unimportant because of all we are doing for and with Jordan.
Thank you all for supporting us through this journey!
Ellen tried a new (but actually old) sippy cup with honey thick Pediasure. Jordan sounded very wet and gurgley. She thickened it to a pudding consistency and she did okay with it when given just a sip at a time.
We then worked on a bottle. Ellen used a Dr. Brown's bottle with a Y-cut nipple and pudding thick Pediasure. Again, we only let Jordan take one sip at a time. She actually did quite well with it and didn't sound too wet. After she started refusing the bottle we tried spoon feeding her and she took a few spoonfuls before she didn't want anymore. Over a period of about 30 minutes she took almost 3 oz!
The nutritionist and dietitian agreed that Jordan needs to stick to a diet of Pediasure thickened to the appropriate consistency with pudding, yogurt, and cereal. I will drop her fruit and veggie purees for now so that we ensure she is getting the most possible nutrition, calories, and liquids in as little amount of food as possible.
They feel that Jordan has started on a downward spiral - she is getting less nutrition and her energy level is weakening and so she has less energy to put towards eating, thus giving her less nutrition. Her therapy has now been increased to 2x/wk and they will monitor her closely. They want to get her in to see the specialist before July 3, but she is out of town for 2 weeks. If necessary, they may have her see a different specialist in the same program at DeVos Children's Hospital.
As I was leaving today I asked Ellen about the feeding tube and she said she was pretty confident Jordan would need one to get her the nutrition she needs. Currently her therapy consists of finding the safest way to get her as much nutrition as possible and they can't even work with her on building the skills she needs to learn.
The past few days have been quite stressful and somewhat overwhelming for me. I am constantly concerned about what Jordan is consuming and how much and often she has wet diapers. I know that Jordan is being monitored weekly but a day seems like forever when she's not drinking and not peeing! Please pray that Jordan receives the nutrition she needs to stay healthy and for my stress level through all of this. I don't feel like I can keep up with all of the day-to-day work of being a wife and mom to 3 kids. Also pray for Mak and Conner in all of this - I don't want them to feel unimportant because of all we are doing for and with Jordan.
Thank you all for supporting us through this journey!
Monday, June 9, 2008
Feeding Time
Well, over the past several days, I have been working on feeding Jordan according to the therapist's instructions. It's a lot of work!! I have used 2 separate containers to mix approx. 8 oz of her Pediasure with various thickeners (pudding, rice cereal, applesauce, yogurt) and then label them for the day. I was mixing it for each meal, but saw that my friend Tara Ronning had a great idea for Elliot's formula and realized it would be easier to make a bunch and pour it into the bottle/cup for each feeding. I have also thickened her stage 2 purees to approx. a pudding thickness if they are thin. Feeding her is still very time consuming and requires quite a bit of focus from me. I have realized that I don't like the open cup at all. Jordan has a tendency to lean her head forward, diving into it at the last second, and breathing in at the same time and usually ends up gulping it with a bunch of air - completely what she's not supposed to do!! I have found that although labor intensive, spoon feeding her liquids seems to be the best way to safely get them into her tummy.
I am getting more concerned about the quantity of liquids she is consuming on a daily basis. The past 2 days she has been right around 10 oz of Pediasure mixture for the entire day!! She was around 15 oz consistently for the past several weeks. This drop in quantity might be due to the fact we are now thickening it or that we switched to Pediasure. My primary concern is that she is probably borderline dehydrated most of the time. In fact, yesterday she only had to to have her diaper changed when she got up, once in the afternoon, and then again before bed. I know they wanted me to watch it closely with her and so I will see what happens today and discuss it at her therapy tomorrow.
Overall, Jordan still continues to "seem" fine. She is the happiest and most content baby EVER!!! I love to see her make small accomplishments - in the past week or so she started being able to hold a toy in one hand and pick up another in the other one. We have also worked on teaching her how to wave bye-bye. She is constantly banging 2 toys together now also. It is so much fun to work with her and see the joy it brings her to be able to do things! I am anticipating watching her continue to blossom as we move forward in her therapy.
I am getting more concerned about the quantity of liquids she is consuming on a daily basis. The past 2 days she has been right around 10 oz of Pediasure mixture for the entire day!! She was around 15 oz consistently for the past several weeks. This drop in quantity might be due to the fact we are now thickening it or that we switched to Pediasure. My primary concern is that she is probably borderline dehydrated most of the time. In fact, yesterday she only had to to have her diaper changed when she got up, once in the afternoon, and then again before bed. I know they wanted me to watch it closely with her and so I will see what happens today and discuss it at her therapy tomorrow.
Overall, Jordan still continues to "seem" fine. She is the happiest and most content baby EVER!!! I love to see her make small accomplishments - in the past week or so she started being able to hold a toy in one hand and pick up another in the other one. We have also worked on teaching her how to wave bye-bye. She is constantly banging 2 toys together now also. It is so much fun to work with her and see the joy it brings her to be able to do things! I am anticipating watching her continue to blossom as we move forward in her therapy.
Friday, June 6, 2008
Appointment with the Specialist at DeVos Children's Hospital
Yesterday I had a phone call from Nancy at Dr. Burdo-Hartman's office. She is the pediatric neurodevelopmental specialist at the DeVos Children's Hospital Pediatric Feeding Clinic. I had about a 20 minute phone interview and was scheduled for an evaluation appointment on July 3rd. Although it is a month away, it actually is a very good thing because she normally schedules a few months out.
At the appointment she will be evaluated by Dr. Wendy Burdo-Hartman (pediatric neurodevelopmental specialist), Dr. Pasternak (behavioral psychologist), and occupational therapist, and a nutritionist. Together they will determine what needs to be done with Jordan - therapy, additional tests, etc...
This is a very good step in determining what is going on with Jordan from all perspectives. The multidisciplinary approach will hopefully provide a stronger diagnosis and treatment program than having her evaluated by everyone separately (like KOS had done physical and neurological, but MFB is doing oral motor only). Please be in prayer about the evaluation and all Dr.'s participating in it.
At the appointment she will be evaluated by Dr. Wendy Burdo-Hartman (pediatric neurodevelopmental specialist), Dr. Pasternak (behavioral psychologist), and occupational therapist, and a nutritionist. Together they will determine what needs to be done with Jordan - therapy, additional tests, etc...
This is a very good step in determining what is going on with Jordan from all perspectives. The multidisciplinary approach will hopefully provide a stronger diagnosis and treatment program than having her evaluated by everyone separately (like KOS had done physical and neurological, but MFB is doing oral motor only). Please be in prayer about the evaluation and all Dr.'s participating in it.
Thursday, June 5, 2008
Hannah is my Hero!!!
Hannah at MFB just called and told me that everything from the start has been authorized by our insurance!!! This morning she faxed the report from the neurologist and the report from the swallow study yesterday to our insurance company and told them that they needed to process it asap. She went above the person who had originally handled Jordan's case and pretty much followed up constantly to make sure they understood the severity of the situation. I am soooooo glad to have her on Jordan's team for all of this!! Thanks Hannah!!!!!
Thank you also to everyone who is praying for Jordan. I know that God is working in and through this whole situation. I know that without prayer, I would never have the energy to keep going everyday without breaking down. Although everyday is exhausting, somehow I manage to get through (sometimes I think the caffeine helps!) Please continue to pray for Jordan, our family, and the team of individuals that are working to determine what's going on and give her what she needs.
Thank you also to everyone who is praying for Jordan. I know that God is working in and through this whole situation. I know that without prayer, I would never have the energy to keep going everyday without breaking down. Although everyday is exhausting, somehow I manage to get through (sometimes I think the caffeine helps!) Please continue to pray for Jordan, our family, and the team of individuals that are working to determine what's going on and give her what she needs.
Videofluoroscopy & MFB
Yesterday we had a busy day of evaluating Jordan! We started at MFB with a weight check. Jordan was down to 14 lbs 4 oz - That's back to where she was a month ago and almost a pound down from where she was 2 weeks ago. Although it is frustrating and somewhat concerning to see her losing weight, we had to take into account the fact that we have completely changed everything about her eating in the past month. She has been weaned from breastfeeding and had to start using formula through a bottle and a Solo cup for her liquids. We have messed with the formula itself - thickening it by using yogurt and pudding - foods she wasn't used to. And introducing an additional "meal" of solids and stopping 2 milk feedings. I guess if someone messed with my "normal" I might not eat as much either! On the good side, she did grow in length a small amount showing that she's getting enough nutrition to grow!
Nurse Jane and Ellen explained that Jordan has been getting enough nutrition to either stay healthy or grow. She chose to stay healthy, which is why she is almost never sick (other than a few colds during the winter and her 2 recent ear infections). If she had chosen to grow, she most likely would have been sick quite frequently over the past year. They were both amazed that she never had bronchitis or pneumonia!
After the weight check, they confirmed that I need to switch her to Pediasure for the additional calories. Good think I stopped at Meijer last night and bought some!
Then we headed over to St. Mary's for the videofluoroscopy. We put Jordan in a little seat and strapped her in. The radiologist took his position next to the machine, and Ellen (our therapist) was ready with all of the different liquids and foods mixed with barium, and the bottles, cups, and bowls. We tried various types of thicknesses in various ways (bottle, cup, spoon) to see how she would react to it. Jordan wasn't on her best behavior but wasn't on her worst either. Ellen was recording everything so that after we were done, she burned a dvd and we headed back to MFB to review the video.
There were several things that the video showed. Jordan had penetration (where the food/liquid starts to go into the lungs but stops before it does and then continues to the stomach), aspiration (where the liquid actually goes past the flap into the lungs), and she also had a hard time managing the food (actually swallowing it all the way down - it would stop 1/2 way down and just sit there). She also had some going up into her nasal passages. Ellen wanted to evaluate the video more and will have a full report for me next week.
In the meantime, I was given some additional instructions for feeding her. I can give her a bottle of nectar thick liquid only if she is very cooperative and doesn't start getting sloppy/sounding gurgley/spitting out the bottle - I have a 5 minute timeframe on the bottle because then she tires and gets sloppy with her swallowing. For meals, I can give her a Solo cup with honey thick liquids unless she starts getting sloppy/sounding gurgley/coughing/gagging. At that point, I have to thicken the liquid to a honey/pudding thickness and feed her by spoon. I also need to thicken the liquidy stage 2 purees to a pudding thickness. She told me to observe her clinically when I am feeding her. Ellen told me that she know this is very labor intensive, but that she wants to make sure Jordan gets as much as possible without tiring or having problems swallowing which can cause serious complications.
Nurse Jane and Ellen together discussed that I need to closely monitor Jordan in the next few days for dehydration and/or bronchitis or upper respiratory issues. Ellen was going to call the pediatrician's office and inform them that if I call with any concerns in the next few days that I am not an over-reactive parent but that my concerns are legitimate since we know that she is not getting a lot of fluids and she is aspirating while drinking/eating. They also decided that they definitely want her to be evaluated by Dr. Burdo-Hartman at the DeVos Children's Hospital.
I was gone from 10-1:45 for this appointment - I was exhausted when I got home!!! I am glad we were able to see what Jordan is doing and I look forward to seeing what Ellen wants to do. She mentioned there are 2 types of feeding tubes that we may need to use to ensure Jordan gets enough nutrition and fluids. I don't necessarily want to have to go to that extent, but I just want to make sure that we do everything we can to ensure Jordan is getting everything her little body needs to stay healthy and grow!!
This information, together with the neurologist's report, I am hoping and praying will be enough to qualify Jordan for our insurance coverage. Although, we will still be following through with the Children's Special Health Care Services.
Nurse Jane and Ellen explained that Jordan has been getting enough nutrition to either stay healthy or grow. She chose to stay healthy, which is why she is almost never sick (other than a few colds during the winter and her 2 recent ear infections). If she had chosen to grow, she most likely would have been sick quite frequently over the past year. They were both amazed that she never had bronchitis or pneumonia!
After the weight check, they confirmed that I need to switch her to Pediasure for the additional calories. Good think I stopped at Meijer last night and bought some!
Then we headed over to St. Mary's for the videofluoroscopy. We put Jordan in a little seat and strapped her in. The radiologist took his position next to the machine, and Ellen (our therapist) was ready with all of the different liquids and foods mixed with barium, and the bottles, cups, and bowls. We tried various types of thicknesses in various ways (bottle, cup, spoon) to see how she would react to it. Jordan wasn't on her best behavior but wasn't on her worst either. Ellen was recording everything so that after we were done, she burned a dvd and we headed back to MFB to review the video.
There were several things that the video showed. Jordan had penetration (where the food/liquid starts to go into the lungs but stops before it does and then continues to the stomach), aspiration (where the liquid actually goes past the flap into the lungs), and she also had a hard time managing the food (actually swallowing it all the way down - it would stop 1/2 way down and just sit there). She also had some going up into her nasal passages. Ellen wanted to evaluate the video more and will have a full report for me next week.
In the meantime, I was given some additional instructions for feeding her. I can give her a bottle of nectar thick liquid only if she is very cooperative and doesn't start getting sloppy/sounding gurgley/spitting out the bottle - I have a 5 minute timeframe on the bottle because then she tires and gets sloppy with her swallowing. For meals, I can give her a Solo cup with honey thick liquids unless she starts getting sloppy/sounding gurgley/coughing/gagging. At that point, I have to thicken the liquid to a honey/pudding thickness and feed her by spoon. I also need to thicken the liquidy stage 2 purees to a pudding thickness. She told me to observe her clinically when I am feeding her. Ellen told me that she know this is very labor intensive, but that she wants to make sure Jordan gets as much as possible without tiring or having problems swallowing which can cause serious complications.
Nurse Jane and Ellen together discussed that I need to closely monitor Jordan in the next few days for dehydration and/or bronchitis or upper respiratory issues. Ellen was going to call the pediatrician's office and inform them that if I call with any concerns in the next few days that I am not an over-reactive parent but that my concerns are legitimate since we know that she is not getting a lot of fluids and she is aspirating while drinking/eating. They also decided that they definitely want her to be evaluated by Dr. Burdo-Hartman at the DeVos Children's Hospital.
I was gone from 10-1:45 for this appointment - I was exhausted when I got home!!! I am glad we were able to see what Jordan is doing and I look forward to seeing what Ellen wants to do. She mentioned there are 2 types of feeding tubes that we may need to use to ensure Jordan gets enough nutrition and fluids. I don't necessarily want to have to go to that extent, but I just want to make sure that we do everything we can to ensure Jordan is getting everything her little body needs to stay healthy and grow!!
This information, together with the neurologist's report, I am hoping and praying will be enough to qualify Jordan for our insurance coverage. Although, we will still be following through with the Children's Special Health Care Services.
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