We packed up on Saturday morning, and headed out to meet our new friends. We gathered at the family's home. Carl & I met a lot of great folks - all whom have a child with DS. We met a lot of great kids. Lunch was fabulous! The company was wonderful. The Easter Egg Hunt in their beautiful back yard was a smashing success. The Easter Bunny even stopped by for pictures, etc. Jesse and James had a riot collecting their Easter eggs. They played on the climbing structure, with various toys, enjoyed rides in a wagon, and hugged the Easter bunny. After a few hours, we said good bye to our new friends and headed home.
Jesse and James were soon off, again, to their grandparents house. There, they spent the remainder of the day cooking goodies for Sunday's get-together. Carl and I spent most of our day cleaning and preparing for Sunday.
Sunday went smoothly. Everyone came to our house. We all had a nice day. The older boys had fun with their Uncle T & Auntie A. Josiah did what babies do....ate, slept, and enjoyed being cuddled :)
On Monday, K returned to work with Josiah. As usual, he enjoyed seeing his 'girlfriend.' He happily worked with K for the duration. Josiah is demonstrating more and more strength every day. He turns his head from side-to-side, more readily now, while on his tummy. His determination continues to be obvious. He is such a little trooper. After his session, it was James turn.
K met with James for his session. C joined the team this week. C will be working with James, weekly, on his speech. K will continue to work with James, weekly, as well. James loves the extra attention. K is met with squeals of delight, each time. I imagine C will start to experience a similar tradition soon :)
Tuesday had us all returning to the afternoon playgroup; the boys received their "Raising a Reader" book bags. They were very excited.
James had his other playgroup this a.m. Carl and I had planned on bringing James and Josiah to that. Unfortunately, Josiah didn't cooperate with feeding this a.m. So, at the last minute, Carl & James left for playgroup alone. I stayed home with Josiah. I'm still not sure why he was refusing to nurse. He had nursed on one side earlier; the second side, he didn't want any part of. I finally made a bottle which he quickly consumed. He then fell fast asleep. He slept for 4 hours. When he awoke, all was fine again. He has fed well for the rest of the day and evening.
Tomorrow, D comes to work with Josiah. James will be enrolled in preschool, for next year. Then, we are attending a family night at Jesse's school. Friday, we have no plans. I hope to keep it that way....it'll be a much appreciated break.
Wednesday, April 11, 2012
Friday, April 6, 2012
PT, Weight, and Cardiology
Josiah's PT appointment, yesterday, was another success. He met D with huge smiles. He was happy to demonstrate his tricks for her, again. He recognizes certain things as being 'work', thus is more apt to complain during the session. He is making huge strides every week. We need to continue to work on his head control. His arms/legs are making significant improvements each week. It's fun to watch him accomplish new goals.
Josiah had his cardiology appointment this morning. As planned, I woke him early to nurse him. Then, I offered him a bottle of high-calorie formula. He drank 2 oz before it was time to leave.
He slept on the way to the MD. He was in a good mood upon arrival. After the usual check in and EKG, they brought the scale in. 11lbs 2oz. I had estimated an 'ideal' weight of 11lbs 4.5oz for this a.m. We were only 2.5oz off....I'm elated! It was so much better than I feared.
The cardiologist is wonderful and he is thrilled with Josiah's progress. Josiah's heart is no longer a concern. Josiah doesn't need to be seen again for six months. The appointments are backing off....a sure sign of improvement. We are so thankful.
Meanwhile, today is day 4 of my new no-smoking campaign. I'm shocked by how easy this has been. I've known, for a long time, that I was ready to quit. I knew "cutting down" would never work for me. I knew it would be an "all or nothing" approach. This has played out well. I have no physical cravings. I have 2 or 3 "psychological/behavioral" cravings per day. They only last mere moments; I am able to easily redirect myself. After 27 yrs of smoking, believing it was going to be this easy would have seemed delusional. I am so thankful for the reality.
Tomorrow, we will join a new group of friends (all of whom are blessed with a child with DS), for an Easter Egg hunt & lunch. The siblings are all coming too. I'm really looking forward to meeting our new friends.
Sunday, family is coming here to celebrate Easter. I remain in awe of the miracles that have blessed my family. I remain thankful.....to so many.....for so much <3
Josiah had his cardiology appointment this morning. As planned, I woke him early to nurse him. Then, I offered him a bottle of high-calorie formula. He drank 2 oz before it was time to leave.
He slept on the way to the MD. He was in a good mood upon arrival. After the usual check in and EKG, they brought the scale in. 11lbs 2oz. I had estimated an 'ideal' weight of 11lbs 4.5oz for this a.m. We were only 2.5oz off....I'm elated! It was so much better than I feared.
The cardiologist is wonderful and he is thrilled with Josiah's progress. Josiah's heart is no longer a concern. Josiah doesn't need to be seen again for six months. The appointments are backing off....a sure sign of improvement. We are so thankful.
Meanwhile, today is day 4 of my new no-smoking campaign. I'm shocked by how easy this has been. I've known, for a long time, that I was ready to quit. I knew "cutting down" would never work for me. I knew it would be an "all or nothing" approach. This has played out well. I have no physical cravings. I have 2 or 3 "psychological/behavioral" cravings per day. They only last mere moments; I am able to easily redirect myself. After 27 yrs of smoking, believing it was going to be this easy would have seemed delusional. I am so thankful for the reality.
Tomorrow, we will join a new group of friends (all of whom are blessed with a child with DS), for an Easter Egg hunt & lunch. The siblings are all coming too. I'm really looking forward to meeting our new friends.
Sunday, family is coming here to celebrate Easter. I remain in awe of the miracles that have blessed my family. I remain thankful.....to so many.....for so much <3
Thursday, April 5, 2012
Waging the Weight Battle
So, it occurred to me that Josiah will be weighed in the morning. This is routine during his cardiology visits. I tossed him on the scale today....10lbs 11.5oz. Are you serious? I feel like the last two weeks has been a series of experiments gone wrong lol. I had stopped supplementing; that came back to bite me in the butt. I'd gotten lazy about pumping; I need to make an extra effort now. I've been letting Josiah sleep at night (generally 9pm until 7am); I will resume the midnight wake-up/feedings. Given that he weighed 10lbs 6.5oz 2 wks ago, he should "ideally" weigh 11lbs 4.5oz tomorrow morning. UGH!!! This continues to be a huge frustration for me. I cannot wait until we're at the point where we can relax for a minute without the fear of the "weight thing." So, I'll give him a few extra bottles tonight, in the a.m., and hope for the best. I'll fix the aforementioned things, in the meanwhile.
Tomorrow's cardiology appointment should be a breeze. Josiah is doing great post-surgery! We anticipate no problems or surprises. We just need to fix the weight issue before we see the pediatrician again :>
I think it's time to touch base with KF again. Soon.....this is driving me CRAZY :)
Tomorrow's cardiology appointment should be a breeze. Josiah is doing great post-surgery! We anticipate no problems or surprises. We just need to fix the weight issue before we see the pediatrician again :>
I think it's time to touch base with KF again. Soon.....this is driving me CRAZY :)
Tuesday, April 3, 2012
Just an Average Tuesday
My decision, yesterday, to quit smoking had not come without consideration and contemplation. It was years of thought thrust into a split-second decision. I gave myself the rest of Monday to smoke. It was understood, I would not smoke today. And so it has happened. I had my last cigarette at 12:30am, just before retiring for the night. I haven't had one since. It's been 21.5 hours, and counting. So far, so good.
Yesterday, Jesse had school as usual. James had fun with EI. K's arrival was met with squeals of delight. Today, the children returned to playgroup; it meets in the afternoon now, so even Jesse can join in. They all enjoyed that which has become so familiar.
Tomorrow, James starts a new EI group. Josiah will tag along, as the baby brother. I'm looking forward to seeing how he reacts to a new group. K will return in the afternoon to work with Josiah - something I really look forward to. Jesse and Daddy have an outing tomorrow night. On Thursday, Josiah will work with D. Friday, he has his next cardiology appointment.
I'm trying to keep track of Josiah's weight, from home. I finally set up the new baby scale. I weighed him on Sunday. 10lbs 10oz. He had weighed 10lbs 6.5oz, 9 days previously. Ideally, he would have weighed 10lbs 15oz. We're about 5oz off. I had stopped fortifying his bottles; I immediately resumed the fortification process. Yesterday, I weighed him but it was later in the day...11lbs even. He had just eaten. I just realized that he'll be weighed on Friday (at the cardiologist), so I'll try to make sure his weight is "up there" before we go lol.
So, all in all - no big deal. Ongoing weight checks, EI, PT, playgroups, preschool, cardiology, and quit smoking. No problem! :)
Yesterday, Jesse had school as usual. James had fun with EI. K's arrival was met with squeals of delight. Today, the children returned to playgroup; it meets in the afternoon now, so even Jesse can join in. They all enjoyed that which has become so familiar.
Tomorrow, James starts a new EI group. Josiah will tag along, as the baby brother. I'm looking forward to seeing how he reacts to a new group. K will return in the afternoon to work with Josiah - something I really look forward to. Jesse and Daddy have an outing tomorrow night. On Thursday, Josiah will work with D. Friday, he has his next cardiology appointment.
I'm trying to keep track of Josiah's weight, from home. I finally set up the new baby scale. I weighed him on Sunday. 10lbs 10oz. He had weighed 10lbs 6.5oz, 9 days previously. Ideally, he would have weighed 10lbs 15oz. We're about 5oz off. I had stopped fortifying his bottles; I immediately resumed the fortification process. Yesterday, I weighed him but it was later in the day...11lbs even. He had just eaten. I just realized that he'll be weighed on Friday (at the cardiologist), so I'll try to make sure his weight is "up there" before we go lol.
So, all in all - no big deal. Ongoing weight checks, EI, PT, playgroups, preschool, cardiology, and quit smoking. No problem! :)
Monday, April 2, 2012
Addiction and Contradiction
My oldest brother, Scott, died in September of an accidental drug overdose. Addiction had plagued him for years/decades. I never understood why it had such a hold on him. His personality seemed to predispose him to such things. Alcohol was my brother's drug of choice. It was the constant. He dappled in cocaine, etc, but 'booze' provided the daily grounding he seemed so desperate for.
Being ten years older than me, I honestly don't remember Scott 'before booze.' He was drinking by the time he was 15; I was 5. As the years passed, I started seeing the negative impact it was having on his life. He was an abusive 'drunk.' He didn't work (to speak of). He used, and abused, my parents. He abused his wife. He lost the few things he had managed to acquire in his alcohol-controlled life. He burnt all bridges.
My brother, with his sparkling eyes, ended up alone and homeless. He was in and out of rehab on countless occasions but he always returned to his life on the streets. That is where he died. On the streets, he finally found peace.
I think back to our talks. We were close. I used to say we were "twins born ten years apart." I could sense things about Scott, even when he lived hundreds of miles away. I could sense trouble. I knew when things were going to go wrong. I tried everything I could to help him (as did most of his family and friends). We talked, frankly, about addiction. By the end, I was angry about his addiction. I was angry that he continued to choose to use. I knew this thing would take my oldest brother away from me. Last summer (2010), I told my husband, and sister, "Scott will be dead in a year." I can't explain why, but I knew. I knew he would be dead in a year. Less than 14 months later, we buried him.
I gave Scott a lot of strife, over the years, about his drinking. All the while, I smoked cigarettes (and still do). It somehow seemed different. He was mean when he drank. I don't get mean when I smoke. I guess that's why it never seemed to be a contradiction for me. As I think about it now, I was fighting to save his life. It wasn't about him simply drinking; it wasn't about being mean when he drank. It was about wanting him to stay alive. Now it's my turn. I won't be a hypocrite.
I started smoking when I was 14. I've smoked almost twice as long. I need to let go of my addiction to cigarettes. I wanted Scott to be a part of our family (in the last few years, he was restricted due to his unpredictable/volatile behavior). I, too, want to be a part of my own family.....for many years to come. I don't want something as stupid as cigarettes to take me away from the people I love the most. Therefore, today is my last day with this vice. When I wake up tomorrow, it will be without the need to utilize something which could ultimately kill me.
My brother's addiction killed him. I will do everything in my power to make sure I learn from the lesson of watching him. I will not allow my parents to bury me over nonsense.
Tomorrow, and each day after that, I will be smoke-free.
(I love you, Scott <3)
Being ten years older than me, I honestly don't remember Scott 'before booze.' He was drinking by the time he was 15; I was 5. As the years passed, I started seeing the negative impact it was having on his life. He was an abusive 'drunk.' He didn't work (to speak of). He used, and abused, my parents. He abused his wife. He lost the few things he had managed to acquire in his alcohol-controlled life. He burnt all bridges.
My brother, with his sparkling eyes, ended up alone and homeless. He was in and out of rehab on countless occasions but he always returned to his life on the streets. That is where he died. On the streets, he finally found peace.
I think back to our talks. We were close. I used to say we were "twins born ten years apart." I could sense things about Scott, even when he lived hundreds of miles away. I could sense trouble. I knew when things were going to go wrong. I tried everything I could to help him (as did most of his family and friends). We talked, frankly, about addiction. By the end, I was angry about his addiction. I was angry that he continued to choose to use. I knew this thing would take my oldest brother away from me. Last summer (2010), I told my husband, and sister, "Scott will be dead in a year." I can't explain why, but I knew. I knew he would be dead in a year. Less than 14 months later, we buried him.
I gave Scott a lot of strife, over the years, about his drinking. All the while, I smoked cigarettes (and still do). It somehow seemed different. He was mean when he drank. I don't get mean when I smoke. I guess that's why it never seemed to be a contradiction for me. As I think about it now, I was fighting to save his life. It wasn't about him simply drinking; it wasn't about being mean when he drank. It was about wanting him to stay alive. Now it's my turn. I won't be a hypocrite.
I started smoking when I was 14. I've smoked almost twice as long. I need to let go of my addiction to cigarettes. I wanted Scott to be a part of our family (in the last few years, he was restricted due to his unpredictable/volatile behavior). I, too, want to be a part of my own family.....for many years to come. I don't want something as stupid as cigarettes to take me away from the people I love the most. Therefore, today is my last day with this vice. When I wake up tomorrow, it will be without the need to utilize something which could ultimately kill me.
My brother's addiction killed him. I will do everything in my power to make sure I learn from the lesson of watching him. I will not allow my parents to bury me over nonsense.
Tomorrow, and each day after that, I will be smoke-free.
(I love you, Scott <3)
Sunday, April 1, 2012
A New Venture :)
I made the decision to start creating/selling merchandise to raise awareness for Down Syndrome. Bumper stickers & Magnets are available immediately. They are $10 and $5, respectively. Shipping is free.
I'm just now getting it off the ground, so please bear with me. LOTS of great stuff will be added soon. In the meanwhile, please check out my ebay storefront & show your support <3
http://stores.ebay.com/Up-the-Down-Staircase
I'm just now getting it off the ground, so please bear with me. LOTS of great stuff will be added soon. In the meanwhile, please check out my ebay storefront & show your support <3
http://stores.ebay.com/Up-the-Down-Staircase
PT Visit, 'Mama,' and Eating
This has been a great week.
D came out on Thursday to work with Josiah on PT. He continues to impress. I woke him at 7am, fed him, changed him, and prepared the floor for their session. D's prompt arrival was met with smiles and vocalizations. Josiah did very well with his side-lying this week. He reached for toys, grasping them with his little hands. He made a lot of eye contact with D, me (every time I accidentally came into view), and Jesse (who was getting ready for school). He demonstrated great tummy time, working hard to gain muscle control in his neck. He still gets very frustrated while on his tummy. He wants to do it all; he becomes frustrated when his little body doesn't cooperate. When on his belly, he particularly enjoys his head being turned to the right. He gets angry when D tries turning it to the left. It is while his head is turned to the left that he demonstrates his determination. He lifts his head, if ever so slightly, and uses his left hand to turn his head back to the right lol.
About 30 minutes into the session, he neared "meltdown-mode." He was frustrated from working so hard. Luckily, we engaged him with a favorite toy and he was able to settle down quickly. He cooperatively worked for another 30 minutes. It was a great session; we were thrilled.
During the earlier part of the week, I believed that Josiah had said "Mama" twice. I also knew my own hopes could be swaying my perception. Thursday morning, he proved that my perception was accurate. While working with D, I crossed the room; He quickly spotted me. He looked at me and, very deliberately, said "Mama." I was thrilled to hear that word. It was one of those "heart melting" moments.
Josiah continues to nurse well. I was becoming frustrated, again, regarding the need for supplementation. Yet, I know that the we cannot lose ground with the weight-gain battle, we fought so hard to win. I stopped fortifying Josiah's bottles the other day. I want to see how well he does without the extra calories. He continues to get bottles of breast milk or formula, they are just not "fortified." Meanwhile, I continue my quest to increase my own supply of milk. Yesterday, I had a mere flash of a memory regarding oatmeal. While attempting to nurse Jesse, five years ago, I read that oatmeal could assist in increasing milk supply. How had I forgotten that? One quick search in a newly purchased book confirmed the memory. So, last night, I made oatmeal cookies. Carl & I enjoyed quite a few of them, right out of the oven. Perhaps, it's just wishful thinking; Perhaps, it's a self-fulfilling prophesy. All I know is that my supply showed improvement today. I just made oatmeal muffins. If it works, don't fix it; Right?
I bought a baby scale; it arrived yesterday. I will set it up on Sunday, and see where we stand. I hope ceasing the fortifying doesn't come back to bite me (or Josiah) in the butt. I don't think it will. I think he's gained weight; he feels like he gained weight. I'll have a better sense tomorrow. Fingers are crossed :)
D came out on Thursday to work with Josiah on PT. He continues to impress. I woke him at 7am, fed him, changed him, and prepared the floor for their session. D's prompt arrival was met with smiles and vocalizations. Josiah did very well with his side-lying this week. He reached for toys, grasping them with his little hands. He made a lot of eye contact with D, me (every time I accidentally came into view), and Jesse (who was getting ready for school). He demonstrated great tummy time, working hard to gain muscle control in his neck. He still gets very frustrated while on his tummy. He wants to do it all; he becomes frustrated when his little body doesn't cooperate. When on his belly, he particularly enjoys his head being turned to the right. He gets angry when D tries turning it to the left. It is while his head is turned to the left that he demonstrates his determination. He lifts his head, if ever so slightly, and uses his left hand to turn his head back to the right lol.
About 30 minutes into the session, he neared "meltdown-mode." He was frustrated from working so hard. Luckily, we engaged him with a favorite toy and he was able to settle down quickly. He cooperatively worked for another 30 minutes. It was a great session; we were thrilled.
During the earlier part of the week, I believed that Josiah had said "Mama" twice. I also knew my own hopes could be swaying my perception. Thursday morning, he proved that my perception was accurate. While working with D, I crossed the room; He quickly spotted me. He looked at me and, very deliberately, said "Mama." I was thrilled to hear that word. It was one of those "heart melting" moments.
Josiah continues to nurse well. I was becoming frustrated, again, regarding the need for supplementation. Yet, I know that the we cannot lose ground with the weight-gain battle, we fought so hard to win. I stopped fortifying Josiah's bottles the other day. I want to see how well he does without the extra calories. He continues to get bottles of breast milk or formula, they are just not "fortified." Meanwhile, I continue my quest to increase my own supply of milk. Yesterday, I had a mere flash of a memory regarding oatmeal. While attempting to nurse Jesse, five years ago, I read that oatmeal could assist in increasing milk supply. How had I forgotten that? One quick search in a newly purchased book confirmed the memory. So, last night, I made oatmeal cookies. Carl & I enjoyed quite a few of them, right out of the oven. Perhaps, it's just wishful thinking; Perhaps, it's a self-fulfilling prophesy. All I know is that my supply showed improvement today. I just made oatmeal muffins. If it works, don't fix it; Right?
I bought a baby scale; it arrived yesterday. I will set it up on Sunday, and see where we stand. I hope ceasing the fortifying doesn't come back to bite me (or Josiah) in the butt. I don't think it will. I think he's gained weight; he feels like he gained weight. I'll have a better sense tomorrow. Fingers are crossed :)
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