TWO updates in one day -- WOW!
Right after I got done updating about Jack getting to sitting last night -- I went to the kitchen to get a drink.
When I came back guess who was hanging off the edge of the coffee table??!?!?!?!?
JACK PULLED TO STAND!!!!!!!!! All by himself!!!!!
Now it wasn't pretty and he was hanging on with his left hand and his neck and his legs were every which way (but it was still the MOST amazing sight)
I rushed to get daddy so he could see and Jack started gagging (because of his neck being on the edge of the table) we 'rescued' Jack and had the BIGGEST party EVER!!!
Jack has pulled to stand before but it was always with help and always with tons of begging/pleading/bribing...for some reason in the past few days it's all FINALLY sinking in. When I had left to get my drink Jack was on his back in the middle of the living room...it was such a joyous shock to see him upright (sort of) at the coffee table. It meant it was all HIS idea and HIS desire to be upright. Not something he was doing because mommy or daddy or the PT was pushing for it.
It's honestly like being part of a miracle. I still have goose bumps!!!
Thanks for helping us celebrate these amazing moments. I know no one gets it as much as you guys!
Saturday, May 21, 2005
Friday, May 20, 2005
Jack's been working SO HARD on getting to a sitting position for the past few weeks. He did it once and then all of a sudden yesterday he did it 100 times or more!!! YAY JACK!!!!! It's so neat to watch and it's given me a glimpse into what else he may have in store (like pulling to stand without assistance) I am so P-R-O-U-D of my hard working man!!!!!
Last week Jack had a play date with Olivia! The kids (and mommies) had so much FUN! I added a bunch of pictures from that day to the Spring 2005 album.
Jack is taking swimming lessons and loving it! He goes every Friday and gets so excited as soon as he smells the chlorine...he starts hopping in my arms saying "Oooh, ooh" almost like hurry up slow poke I want to SWIM!!! He does very well swimming and loves to splash of course!
Jack also started a speech therapy program at The Med Center. We REALLY like the recent addition to our team. He's way cool and Jack took to him right away. We'll go there once a week (and will probably be adding some others as we begin to transition out of the home based therapy program).
We took a tour of Jack's pre-school that he will attend next year. It looks like a wonderful place. They have EVERYTHING to content small children and the staff was very nice. The great thing about this school is it's a pre-school for both typical kids and kids with disabilities working in the same classroom. I can't believe it's going to be here before we know it!
We are gearing up for SUMMER -- just got to get rid of these colder days! Jack loves his new jogging stroller and loves to sit outside. He'd stay out there all day if he could.
Jack's doing well and is so happy lately. He's such a joy to be around and makes me laugh every day. We have a great time together!
Last week Jack had a play date with Olivia! The kids (and mommies) had so much FUN! I added a bunch of pictures from that day to the Spring 2005 album.
Jack is taking swimming lessons and loving it! He goes every Friday and gets so excited as soon as he smells the chlorine...he starts hopping in my arms saying "Oooh, ooh" almost like hurry up slow poke I want to SWIM!!! He does very well swimming and loves to splash of course!
Jack also started a speech therapy program at The Med Center. We REALLY like the recent addition to our team. He's way cool and Jack took to him right away. We'll go there once a week (and will probably be adding some others as we begin to transition out of the home based therapy program).
We took a tour of Jack's pre-school that he will attend next year. It looks like a wonderful place. They have EVERYTHING to content small children and the staff was very nice. The great thing about this school is it's a pre-school for both typical kids and kids with disabilities working in the same classroom. I can't believe it's going to be here before we know it!
We are gearing up for SUMMER -- just got to get rid of these colder days! Jack loves his new jogging stroller and loves to sit outside. He'd stay out there all day if he could.
Jack's doing well and is so happy lately. He's such a joy to be around and makes me laugh every day. We have a great time together!
Wednesday, April 20, 2005
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
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 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)!
Saturday, March 26, 2005
Jack has TWO words that came out of nowhere today!!!!! My baby has WORDS!!!!! Can you believe it????
"UP" and "CAT" both with real meaning!!!!
He will use "BABA" for drink -- ST says it's A-OK for now
He will repeat but not use Dada, Mama, Ball and Bubble
I have been petrified lately about having NO words...we can only go forward from here. He's soooo proud when he uses them too! Right now I'm happy and busy celebrating!!!!!
"UP" and "CAT" both with real meaning!!!!
He will use "BABA" for drink -- ST says it's A-OK for now
He will repeat but not use Dada, Mama, Ball and Bubble
I have been petrified lately about having NO words...we can only go forward from here. He's soooo proud when he uses them too! Right now I'm happy and busy celebrating!!!!!
Wednesday, March 23, 2005
Sunday, March 20, 2005
Our neurology appointment went very well. He really listened to everything and had some very sage words of advice too. He referred us to a speech therapy clinic which offers private therapy as well as some other programs. We are also seeing the neurodevelopmental team. He's sending us for a repeat EEG in July with an appointment following so he can read the results to us immediately. He upped Jack's dosage of Tegretol and will send us for blood work in 4 weeks. So luckily we did not have to go to the lab that day!
I had a MAJOR SCARE at the dietician's office. We went there for a quick weight check and the nurse put Jack on the scale and got his weigh in kilograms -- when she converted it to pounds she told us Jack was 20 lbs 7 oz. 6 weeks ago, when we started the duocal and Pediasure (more than his usual 1 can a day) he weighed in at 20 lbs 8 oz...which meant after all of our hard work he LOST an ounce...I was so upset and worried. I called the dietician this morning (who by the way is a SWEETHEART over the phone ) and expressed my concerns over Jack's loss and no gain with the duocal and Pediasure. Well she redid the calculations and GUESS WHAT!!!!???!!! Jack weighs 21 lbs 4 oz!!!!!!!!!! He averaged a gain of 4 grams a day and kids in his age range should gain between 4-10 grams a day...we are finally on track (even if it's the low end) for gaining. She said she would like to see him gain more -- but was pleased with how he's doing. We got to talking about some of Jack's issues and I mentioned CP and she said she has a 13 year old son with CP. I thought that was interesting. I guess I never figured her to 'get' what our life is like but obviously she must know (on some level) what we go through.
All in all I feel we had a great week of appointments. A lot of information, a lot of referrals and a lot of stress -- but all leading us somewhere. I was so afraid that I would end up hitting that brick wall but to my surprise everyone listened and wrote referral after referral. Wonderful news.
So I assume we'll get quite busy with all of the new paths we must travel but it's okay if it helps me help Jack.
I had a MAJOR SCARE at the dietician's office. We went there for a quick weight check and the nurse put Jack on the scale and got his weigh in kilograms -- when she converted it to pounds she told us Jack was 20 lbs 7 oz. 6 weeks ago, when we started the duocal and Pediasure (more than his usual 1 can a day) he weighed in at 20 lbs 8 oz...which meant after all of our hard work he LOST an ounce...I was so upset and worried. I called the dietician this morning (who by the way is a SWEETHEART over the phone ) and expressed my concerns over Jack's loss and no gain with the duocal and Pediasure. Well she redid the calculations and GUESS WHAT!!!!???!!! Jack weighs 21 lbs 4 oz!!!!!!!!!! He averaged a gain of 4 grams a day and kids in his age range should gain between 4-10 grams a day...we are finally on track (even if it's the low end) for gaining. She said she would like to see him gain more -- but was pleased with how he's doing. We got to talking about some of Jack's issues and I mentioned CP and she said she has a 13 year old son with CP. I thought that was interesting. I guess I never figured her to 'get' what our life is like but obviously she must know (on some level) what we go through.
All in all I feel we had a great week of appointments. A lot of information, a lot of referrals and a lot of stress -- but all leading us somewhere. I was so afraid that I would end up hitting that brick wall but to my surprise everyone listened and wrote referral after referral. Wonderful news.
So I assume we'll get quite busy with all of the new paths we must travel but it's okay if it helps me help Jack.
Sunday, February 27, 2005
I have a cute Jack story...Uncle Ben came over last week for pizza. We haven't seen him in a while so when he came in and said "HI" to Jack, Jack looked him square in the eye and said "Uh Oh" we laughed so hard. Jack's never said "Uh Oh" before and hasn't said it since! I know some of you will find it as amusing as we did!
Jack is learning to stand with his walker. I have to help him by reminding him to hold on and by helping him open and place his right hand. I also fix his feet so he has good balance then I can let go and he's standing like such a big boy! I always clap and exclaim how good he's doing and his smile says it all. He's proud too! I can ask him to step and he'll step once with his left leg. I have to ask him again to step and then I point to his right leg and after building up the nerve and confidence he steps again with the right leg. We then throw a HUGE celebration and I pick him up and spin him around. He LOVES this and we do it over and over. He's so happy and proud to be standing and stepping. The walker is quite light (made of aluminum) and it's amazing that he's just using a little bit of support and can stand for a long time. I think he likes the view too.
I took Jack to Wal-mart to get his 2nd year pictures taken. We got a coupon in the mail for a photo session and a nice big photo package for $3.88!!! No hidden fees -- I just had to sit and let them try to talk me into buying a larger package deal. What an excellent deal! Jack was a ham (of course) and was making everyone laugh at the photo place. I think it's going to be a cute picture. We get them back on March 17th.
We also decided to trade in Jason's black Honda Civic for a MINIVAN!!! I LOVE it. It's great. I used to exclaim that I would NEVER have a minivan -- just didn't see what all the fuss was about. Well, let me tell you, I get it now! We went for groceries yesterday and it was so much easier and less of a hassle to load everything! I also don't bump my head (or Jack's) or break my back trying to get him in and out of his car seat. I can't wait for all of you to check it out! It'll be great for our beach trips this year too!
Jack is learning to stand with his walker. I have to help him by reminding him to hold on and by helping him open and place his right hand. I also fix his feet so he has good balance then I can let go and he's standing like such a big boy! I always clap and exclaim how good he's doing and his smile says it all. He's proud too! I can ask him to step and he'll step once with his left leg. I have to ask him again to step and then I point to his right leg and after building up the nerve and confidence he steps again with the right leg. We then throw a HUGE celebration and I pick him up and spin him around. He LOVES this and we do it over and over. He's so happy and proud to be standing and stepping. The walker is quite light (made of aluminum) and it's amazing that he's just using a little bit of support and can stand for a long time. I think he likes the view too.
I took Jack to Wal-mart to get his 2nd year pictures taken. We got a coupon in the mail for a photo session and a nice big photo package for $3.88!!! No hidden fees -- I just had to sit and let them try to talk me into buying a larger package deal. What an excellent deal! Jack was a ham (of course) and was making everyone laugh at the photo place. I think it's going to be a cute picture. We get them back on March 17th.
We also decided to trade in Jason's black Honda Civic for a MINIVAN!!! I LOVE it. It's great. I used to exclaim that I would NEVER have a minivan -- just didn't see what all the fuss was about. Well, let me tell you, I get it now! We went for groceries yesterday and it was so much easier and less of a hassle to load everything! I also don't bump my head (or Jack's) or break my back trying to get him in and out of his car seat. I can't wait for all of you to check it out! It'll be great for our beach trips this year too!
Tuesday, February 22, 2005
Here is a list of a lot of new things Jack is doing in the last two weeks or so. Some of these we've been working on for OVER A YEAR by now. It feels good that certain things are starting to 'click' for Jack.
• Jack can play patty cake with BOTH HANDS! Upon request…
• He can point to his nose and mouth upon request…
• NO MORE BOTTLE!! Jack has moved on to a straw sippy cup that he sometimes holds on his own for completely independent drinking!!!
• Signs for more
• Can wave bye bye
• Says “Bah” for Ball!!! Only when prompted or reminded
• Says “Bubba” for bubble!!! Only when prompted or reminded
• Is repeating sounds more consistently, like pa pa, ma ma, da da, and ba ba as well as snoring, snorting, coughing and sneezing (he finds these SO FUNNY to repeat!)
• Can pick out objects from a line up like sock, ball, binky, cup, book, paper, etc.
• He can pull to stand very well when placed on his knees
• Is crawling so fast – still on his belly
• Gets back down to sitting position from standing at the furniture
• Can cruise couch without shoes over DAFO’s still won’t budge with shoes on
• Can take steps with hands held
• Jack can play patty cake with BOTH HANDS! Upon request…
• He can point to his nose and mouth upon request…
• NO MORE BOTTLE!! Jack has moved on to a straw sippy cup that he sometimes holds on his own for completely independent drinking!!!
• Signs for more
• Can wave bye bye
• Says “Bah” for Ball!!! Only when prompted or reminded
• Says “Bubba” for bubble!!! Only when prompted or reminded
• Is repeating sounds more consistently, like pa pa, ma ma, da da, and ba ba as well as snoring, snorting, coughing and sneezing (he finds these SO FUNNY to repeat!)
• Can pick out objects from a line up like sock, ball, binky, cup, book, paper, etc.
• He can pull to stand very well when placed on his knees
• Is crawling so fast – still on his belly
• Gets back down to sitting position from standing at the furniture
• Can cruise couch without shoes over DAFO’s still won’t budge with shoes on
• Can take steps with hands held
Friday, February 04, 2005
I took Jack to the pediatrician this morning because he still wasn't feeling well and she said he has an ear infection as well as a cold. So we got some antibiotics and hopefully he'll be on the mend soon. She said it was quite an accomplishment to make it 2 years with no infections and having this be our first prescription for antibiotics was great. So we'll be taking it easy this weekend. Jack is continuing to do well in his DAFO's. I think his muscles are adjusting because he's complaining a bit when I put them on -- but once they are on he doesn't mind them at all. I can't wait until his physical therapist sees him this week! I will keep you posted on how he's doing. Send Jack some get well vibes!!
Thursday, February 03, 2005
I took Jack to get his DAFO braces this morning. He was less than happy to be at the hospital for yet another appointment but was a real trooper considering he's still not feeling well!
Not 10 minutes after I put his DAFOs on Jack CRUISED THE ENTIRE LENGTH OF THE SOFA to fetch a box of tissues. He continued to stand and pull out the tissues one, by one, by one. We have been practicing cruising for almost a year and he would get one or two steps and then his legs would stop working for him. This completely AMAZES me because I was starting to wonder if he actually had the skill -- here it turns out he's probably had the skill for quite some time he only now has the extra support (DAFOs) he needed. I am excited way beyond words right now. We still have so much to work on but boy is this a great boost when his skills were somewhat at a standstill lately -- gross motor wise that is.
Thanks for reading!!!
YAY JACK!!!
Not 10 minutes after I put his DAFOs on Jack CRUISED THE ENTIRE LENGTH OF THE SOFA to fetch a box of tissues. He continued to stand and pull out the tissues one, by one, by one. We have been practicing cruising for almost a year and he would get one or two steps and then his legs would stop working for him. This completely AMAZES me because I was starting to wonder if he actually had the skill -- here it turns out he's probably had the skill for quite some time he only now has the extra support (DAFOs) he needed. I am excited way beyond words right now. We still have so much to work on but boy is this a great boost when his skills were somewhat at a standstill lately -- gross motor wise that is.
Thanks for reading!!!
YAY JACK!!!
Wednesday, February 02, 2005
Jack seems to be feeling a lot better this morning. He's coughing some but doesn't seem to be feeling icky anymore. Last night he ate a good dinner (pizza, tater tots, mixed veggies, peaches and milk) and this morning he had 2 pieces of cinnamon toast and a Danimals drinkable yogurt smoothie. I think I have whatever Jack had...I am not feeling so well today. We canceled therapy for today and will get back into the swing of things next week. I got a phone call yesterday afternoon that Jack's DAFO's are ready and we have our appointment for fitting and instructions tomorrow morning. I am curious to see how Jack reacts to the braces. I know it will be an adjustment at first, but I have hope that he will gain balance and stability and he'll see how much they help him! I've added a new photo album called Jack's Preemie Friends -- you must check it out and see all these cuties! There are 3 right now and I will be adding more as I get them. I talk to their moms through an online forum for parents of preemies.
Tuesday, February 01, 2005
Jack has a cold... and I worry because the last time he got a viral thing he quit eating/drinking and we ended up in the hospital for a couple of days. He's already refusing food and drink but I was able to get a little bit in him regularly yesterday. His doctor said to keep an eye on him, but so far his slight fever (100.5) went down to normal with one dosage of Tylenol and it does not sound like it's in his chest. Please keep your fingers crossed that this passes SOON. This morning Jack is not any better or worse -- he has a close to normal temp now but his congestion seems a little worse...my mom had a huge box of ice-pops in her freezer and was kind enough to bring them over to us yesterday. The first ice-pop didn't go over well. Last night he ate pieces of a grape ice-pop from a bowl...messy but got it in! He is quite cranky but hey, I am too when I am not feeling well! He was worrying me because he really isn't hungry or thirsty but every once in a while he'll take whatever I am offering. This morning it was room temperature white grape juice and diced apples -- and nothing else! But at least it's SOMETHING! I canceled his therapy yesterday and today and hoping he's well enough for tomorrow's session. I will keep you posted!
Thursday, January 27, 2005
An update on my update...I was very happy when I checked my Jell-O and it was 'done' so Jack could have it for part of his snack this afternoon. Well, Jack's never had Jell-O before...the look on his face was PRICELESS! He didn't know what in the world I was feeding him...knew it smelled and tasted good when he licked it, but couldn't understand why it was so cold and slippery. He would get the spoonful in his mouth and then dig it out with his fingers...he did this over and over. He likes it but doesn't quite understand it. We'll work on this too. Ha ha!
Hello everyone! I just wanted to give a quick update on Mr. Jack. He's always been my great eater and he continues to amaze me with what he can pack in his tummy in a day. I guess the dietician's advice felt like criticism, because she never mentioned the good things. I know it's her job, but it's hard not to take it personally! I actually called her and asked for clarification on the 40 ounces of fluid Jack needs in a day. My concern was (and is) filling him up on Pediasure and carnation instant breakfast (which are both basically meals in a can) would lessen his appetite. She said we can give him clear liquids as well such as juice and water, and things like Jell-O and ice cream can count towards his total fluids too. So after mixing a huge batch of Jell-O I feel better knowing I don't have to fill him up with all of those heavy liquids. I've been giving him the Duocal with every meal and offering him more to drink throughout the day. I have to write down what he takes in a day to see if we are meeting our goals. So far he's keeping up with his 3 meals and 2 snacks and getting a little more than 20 ounces of fluid in a day...we'll just keep working at increasing that amount! It does sort of feel like our whole day centers around eating, but Jack's happy and that's all that counts! I will keep you all updated. Thanks for thinking of us!
Tuesday, January 25, 2005
We just got back from the feeding team.
First the great points...the OT and SLP were thrilled with Jack's oral motor skills and they were impressed with his straw and cup (assisted) drinking and lip closure. So they only want to see him in the 'full' clinic in three months.
We will see the dietician monthly. The dietician seemed sort of hardened and as though she likes butting heads with moms of these kiddos. For everything I said she had an opposing argument. I felt like 2 lawyers arguing a case. I stayed very nice and very calm and spoke very clinically about the situation. But inside I was screaming -- this is my CHILD we are talking about here!!
She calculated him at 1250 - 1500 cals a day as to what he takes now. She said he isn't getting anywhere near the required amount of liquids...he gets about 20 oz of fluid a day and she would like him to get 40 oz of fluid a day PLUS his 5 regular meals. It's never going to happen. I will try my best but the more you fill a kid (or anyone) up on liquids, the less solids they'll eat.
What she suggests in addition to the high calorie foods is 40 oz of Pediasure, carnation instant breakfast, carnation juice w/ protein, or whole milk. Plus she wants 2 tsp Duocal for each meal 3-5 times a day.
I am hoping this puts the weight on Jack but it feels like I am being set up to fail. I mean realistically I can't see him taking 3 meals, 2 snacks AND 40 oz of liquid. Like I said, I will certainly try and hope for the best.
She said he's technically 'failure to thrive' and if we needed to use the label to get Pediasure or Duocal we will but it's not in the report at this time. I feel so badly because I feel like it's all my fault because I make all of Jack's food, I sit with him for all of his meals I am the one that gives in or gives up when a meal isn't going smoothly. I am the one that researches high cal recipes, shops for the ingredients, prepares the meal to sometimes watch my precious toddler throw it all on the floor for my already FAT dog to eat. Sigh...
I am not going to let myself get discouraged. We are going to try this 'plan' for a month and see what happens. Thanks for listening!
First the great points...the OT and SLP were thrilled with Jack's oral motor skills and they were impressed with his straw and cup (assisted) drinking and lip closure. So they only want to see him in the 'full' clinic in three months.
We will see the dietician monthly. The dietician seemed sort of hardened and as though she likes butting heads with moms of these kiddos. For everything I said she had an opposing argument. I felt like 2 lawyers arguing a case. I stayed very nice and very calm and spoke very clinically about the situation. But inside I was screaming -- this is my CHILD we are talking about here!!
She calculated him at 1250 - 1500 cals a day as to what he takes now. She said he isn't getting anywhere near the required amount of liquids...he gets about 20 oz of fluid a day and she would like him to get 40 oz of fluid a day PLUS his 5 regular meals. It's never going to happen. I will try my best but the more you fill a kid (or anyone) up on liquids, the less solids they'll eat.
What she suggests in addition to the high calorie foods is 40 oz of Pediasure, carnation instant breakfast, carnation juice w/ protein, or whole milk. Plus she wants 2 tsp Duocal for each meal 3-5 times a day.
I am hoping this puts the weight on Jack but it feels like I am being set up to fail. I mean realistically I can't see him taking 3 meals, 2 snacks AND 40 oz of liquid. Like I said, I will certainly try and hope for the best.
She said he's technically 'failure to thrive' and if we needed to use the label to get Pediasure or Duocal we will but it's not in the report at this time. I feel so badly because I feel like it's all my fault because I make all of Jack's food, I sit with him for all of his meals I am the one that gives in or gives up when a meal isn't going smoothly. I am the one that researches high cal recipes, shops for the ingredients, prepares the meal to sometimes watch my precious toddler throw it all on the floor for my already FAT dog to eat. Sigh...
I am not going to let myself get discouraged. We are going to try this 'plan' for a month and see what happens. Thanks for listening!
Thursday, January 20, 2005
Jack is doing well! We've had a busy few weeks with appointments and it's been so COLD I hate to leave the house. Jack is now crawling faster and faster as well as trying his hardest to pull to stand. He tries to use his upper body without bringing his legs along...we have to remind him that his legs are there to help him! After a few tries (and me supporting him under his butt) it clicks and he finally gets up! He looks so proud when he does it. He can take steps with two hands held and needs less support as the weeks go on. Jack was fitted for DAFOs (dynamic ankle foot orthotics) this morning. They are plastic braces that go right below his knee. Jack wasn’t sure what to make of the casting. They sat him on a table with me sitting next to him and put both legs in plaster casts to create a mold. They cut them off and are sending them away to get his DAFOs made. I am looking forward to getting them because I believe it will make all the difference in his standing, cruising and eventually walking!
Jack has remained seizure free since being put on Tegretol late this summer. He adjusted well to his meds and now knows the drill each morning and evening! We had a check up with his neurosurgeon in December and he only wants to see him back in 9 months time instead of our usual 6 months.
Jack doesn't have any words yet except mama, dada, and baba (for bottle) he has a few signs but isn't consistent with them although just yesterday he constantly made the sign for ‘more’ when he wanted more Goldfish crackers. He understands very much of what we say and I am waiting for what goes in to finally come out! He can follow simple requests like brush hair, pet puppy, where's daddy?, get your sock, etc. One really exciting accomplishment is doing pattycake upon request (WITH BOTH HANDS!!!) For the longest time Jack would completely ignore his right hand but as the weeks go by he uses it more and more. Over Christmas we learned that he can rip paper with two hands. It's so great to see him using both hands together!
He's eating all kinds of table foods -- basically everything we eat. I am so proud of his progress in this area. Even though he eats well and eats high calorie foods he is not growing as well as his pediatrician would like. We went to his ped for a weight and growth check and he weighed in at 20 lbs, 12 oz and 33 inches tall. He is declining slightly on his own growth curve so the ped referred us to the feeding clinic. Our appointment is this coming Tuesday. Please send all the positive thoughts you can for that appointment!
Jack has remained seizure free since being put on Tegretol late this summer. He adjusted well to his meds and now knows the drill each morning and evening! We had a check up with his neurosurgeon in December and he only wants to see him back in 9 months time instead of our usual 6 months.
Jack doesn't have any words yet except mama, dada, and baba (for bottle) he has a few signs but isn't consistent with them although just yesterday he constantly made the sign for ‘more’ when he wanted more Goldfish crackers. He understands very much of what we say and I am waiting for what goes in to finally come out! He can follow simple requests like brush hair, pet puppy, where's daddy?, get your sock, etc. One really exciting accomplishment is doing pattycake upon request (WITH BOTH HANDS!!!) For the longest time Jack would completely ignore his right hand but as the weeks go by he uses it more and more. Over Christmas we learned that he can rip paper with two hands. It's so great to see him using both hands together!
He's eating all kinds of table foods -- basically everything we eat. I am so proud of his progress in this area. Even though he eats well and eats high calorie foods he is not growing as well as his pediatrician would like. We went to his ped for a weight and growth check and he weighed in at 20 lbs, 12 oz and 33 inches tall. He is declining slightly on his own growth curve so the ped referred us to the feeding clinic. Our appointment is this coming Tuesday. Please send all the positive thoughts you can for that appointment!
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