We had a followup appointment at the feeding clinic yesterday. Our primary reason for seeing the feeding team is poor weight gain/failure to thrive. Last appointment (3 months ago) the dietician said she felt Jack would gain more weight if he had more liquids in his diet. She prescribed duocal and set our liquid goal at 5 cups (40 oz) per day. This goal seemed so outrageous to me and it felt like we were being 'set up to fail.' Six weeks after our appointment we had a weight check. Jack was gaining (although he wasn't even close to 40 oz per day! He gained almost a pound in six weeks!!! She calculated him gaining about 4 grams per day which put us in the 'normal' rage for kids his age. Typically kids gain between 4 and 10 grams per day at Jack's age. I was thrilled that we were on the scale, even if it was at the very bottom!!!
Yesterday Jack weighed in at 22 lbs, 3.3 oz!!!!! He's now gaining TEN GRAMS A DAY!!!! He's at the TOP of the scale!!!! He's taking in 1500 calories a day and drinking about 3 1/3 cups (28 ounces). The dietician was pleased and had no new goals just to keep doing what we've been doing!
The OT and ST that were present were getting on my nerves -- so much so that it nearly made me forget the fact that we are accomplishing our weight gaining goals!!! THey were just annoying me with those comments like "hmmm, Jack doesn't use his righ arm. Do any of his therapists work on that arm?" Um, no...let's see Jack has CP and we get tons of therapy...plus I stay at home with him...nah, we don't work on that arm at all. Plus, they were only seeing him from one angle doing one task. Jack will use both arms (and he keeps amazing me each and every day) just not all the time. So I am trying to just remember the reason we were at the feeding clinic -- to get Jack to gain weight and it's WORKING!!! They said a few other things, but it's not important. We are on top of things with OT and ST. We go back in 4 months -- and after that we may just follow up with the dietician.
So after all of that -- it was very good news! Thanks for reading
Wednesday, April 20, 2005
Wednesday, April 13, 2005
Thoughts of a Mom By Maureen K. Higgins
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority: A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.
We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.
We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the"hospitals, "the" wonder drugs, "the” treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it.
We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line.
We have tolerated inane suggestions and home remedies from well- meaning strangers.
We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.
We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.
We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.
We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with water colors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, Is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority: A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.
We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.
We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the"hospitals, "the" wonder drugs, "the” treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it.
We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line.
We have tolerated inane suggestions and home remedies from well- meaning strangers.
We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.
We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.
We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.
We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with water colors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, Is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
Thursday, April 07, 2005
Jack is doing well -- his new word is APPLE! Although I don't think he knows exactly what an apple is, it's still way too cute when he says it.
We saw Jack's eye doctor last week. He said Jack looks good and doesn't need glasses at this time. We talked about the visual field cut to Jack's right side and both agreed it's still there, but he compensates very well. He asked me if I felt Jack was using one eye more than the other and I told him yes, I felt Jack used his left eye more than his right and the doctor agreed. So we were instructed to patch his left eye several hours a day to make the right eye work harder. So far Jack doesn't like it at all. I actually have to put mittens on his hands so he can't rip the patch off (see attached picture). I've been able to get about 2 hours a day so far. Later in the evening seems to work better than first thing in the morning.
I recently sent out an e-mail about honoring Jack thought the March of Dimes. If you'd like to visit Jack's preemie page through the march of dimes copy and paste the following link.
http://www.marchofdimes.com/howtohelp/b.asp?band_id=761
Jack also had to have blood drawn to see if his level of Tegretol is in its therapeutic range. We haven't gotten the results back yet. He HATES getting blood drawn and I hate it too. Poor fella.
Up until this week we used to rock Jack to sleep at night while we watched tv...however lately he squirms and tries to get down to play so we decided it was time to put him to bed on his own. The first night was horrible! He screamed and screamed for 30 minutes (which felt like 30 hours) it broke my heart in pieces but I knew it had to be done. Jack likes to sleep to music so I remembered seeing a little music player that had a little projector in it to show pictures on the ceiling -- I ran to wal-mart yesterday and purchased it. BOY WHAT A DIFFERENCE! Jason and I put Jack in his bed at 9:00 and turned on his little movie and music player and told Jack it was night night time and to have a good time watching his movie. The boy didn't make a PEEP! Although we went in to check on him before he was sleeping -- BIG MISTAKE! He cried for a few minutes but then fell fast asleep. My little baby is growing up -- he doesn't need mommy to rock him to sleep anymore!
I noticed this week that the website owner (babababies) added some nifty things to their websites. Now you can comment on each individual journal entry AND I can add pictures to each journal entry. NEATO!
We are loving the warm weather!! Jason and I got Jack a neat jogging stroller (because he's getting too long for his small stroller) and we all love it. It's 'souped' up with all kinds of things...it's like the Cadillac of strollers! I'll have to get some pictures of Jack in it.
I hope everyone is doing well. Time to put Jack down for his nap (which unlike night night time, he's been going down for naps on his own for almost a year now)!
We saw Jack's eye doctor last week. He said Jack looks good and doesn't need glasses at this time. We talked about the visual field cut to Jack's right side and both agreed it's still there, but he compensates very well. He asked me if I felt Jack was using one eye more than the other and I told him yes, I felt Jack used his left eye more than his right and the doctor agreed. So we were instructed to patch his left eye several hours a day to make the right eye work harder. So far Jack doesn't like it at all. I actually have to put mittens on his hands so he can't rip the patch off (see attached picture). I've been able to get about 2 hours a day so far. Later in the evening seems to work better than first thing in the morning.
I recently sent out an e-mail about honoring Jack thought the March of Dimes. If you'd like to visit Jack's preemie page through the march of dimes copy and paste the following link.
http://www.marchofdimes.com/howtohelp/b.asp?band_id=761
Jack also had to have blood drawn to see if his level of Tegretol is in its therapeutic range. We haven't gotten the results back yet. He HATES getting blood drawn and I hate it too. Poor fella.
Up until this week we used to rock Jack to sleep at night while we watched tv...however lately he squirms and tries to get down to play so we decided it was time to put him to bed on his own. The first night was horrible! He screamed and screamed for 30 minutes (which felt like 30 hours) it broke my heart in pieces but I knew it had to be done. Jack likes to sleep to music so I remembered seeing a little music player that had a little projector in it to show pictures on the ceiling -- I ran to wal-mart yesterday and purchased it. BOY WHAT A DIFFERENCE! Jason and I put Jack in his bed at 9:00 and turned on his little movie and music player and told Jack it was night night time and to have a good time watching his movie. The boy didn't make a PEEP! Although we went in to check on him before he was sleeping -- BIG MISTAKE! He cried for a few minutes but then fell fast asleep. My little baby is growing up -- he doesn't need mommy to rock him to sleep anymore!
I noticed this week that the website owner (babababies) added some nifty things to their websites. Now you can comment on each individual journal entry AND I can add pictures to each journal entry. NEATO!
We are loving the warm weather!! Jason and I got Jack a neat jogging stroller (because he's getting too long for his small stroller) and we all love it. It's 'souped' up with all kinds of things...it's like the Cadillac of strollers! I'll have to get some pictures of Jack in it.
I hope everyone is doing well. Time to put Jack down for his nap (which unlike night night time, he's been going down for naps on his own for almost a year now)!
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