Josiah is blowing me away with all that he is accomplishing!
On Thursday, D (physical therapist) came to work with J. As usual, she was met with smiles and babble. He engaged quickly and easily. For the next 75 minutes, he simply astounded us. Side-sitting, which always brings out tears, resentment, and frustration, was embraced! Josiah tolerated side-sitting (both sides) without complaint, reservation, or crankiness lol. One mirror, appropriately placed, provided the very entertainment he needed. "Where's the cute boy?" "Where's the handsome boy?" "Hi, Me!!!" is all Josiah needed to hear. He not only looked at himself in the mirror, but he kept reaching out to the cutie in the mirror. At times, D & I merely motioned to one another - we dared not jinx the moment.
Belly time is gradually becoming more difficult. Josiah has mastered rolling over, so keeping him on his belly is a difficult task. Now, while on his belly, D is working on keeping his knees pulled up under his belly and rocking him onto his heels. Josiah has been practicing pulling his knees up under him. However, he doesn't like to be placed there and rocked. He complains! I know he'll get used to it soon - as he has all other 'new' movements. Then he'll master it :) It's one step closer to crawling.
Despite his left arm being slightly weaker than the right, Josiah is reaching more with his left arm now. D and C (occupational therapist) have noticed the improvement.
What, I think, excited me the most on Thursday is this: D sat Josiah on his bum, in between her legs, facing away from her. With very little support, Josiah was able to sit for an extended time. Mama was thrilled, to say the least!!! Is sitting in this child's NEAR future? He is an amazing little man!
Whilst sitting, and during belly time, Josiah is 'weight bearing' with his arms VERY well now. This, too, is a marked improvement. He is definitely getting stronger. He is working hard and it is paying off.
One of my fears early on was food (aside from the breastfeeding struggle). Due to Josiah's high palette, I was worried about the food issue. It is very common for children with Down Syndrome to have issues around eating. One big issue tends to be food getting stuck in the high palette. Another HUGE issue is the tendency for the tongue to protrude out of their mouth. Well, Josiah's tongue doesn't protrude - we are so fortunate for that. And, despite the high palette, Josiah has transitioned to eating (baby food) like a trooper. He likes almost everything (not tolerating different foods is another common problem). He keeps his mouth fully closed while eating (again, the tongue poses no problem). Finally, he's eating fruits, veggies, and meats. I couldn't be more delighted.
Every week proves that Josiah is not a child to be underestimated. Every week breeds improvement and success!
I wish everyone could understand the joys of raising a child like Josiah. Every accomplishment is met with amazement. Every smile is pure. Every laugh, sincere. Every moment, a joy. Every snuggle, real. Imagine how wonderful the world would be if only more people could share in that miracle....
Saturday, August 25, 2012
Monday, August 20, 2012
Bated Breath's Burst Bubble
As you may remember, I was a bit excited 2 weeks ago. Josiah had last weighed in at 13lbs 2oz. That was June 8th. Fast forward to the end of July. I brilliantly 'guestimated' (at home) a weight of 16lbs 10oz. That result injected a, perhaps overinflated, sense of excitement (and desire to 'knock their socks off'). I was rearing to get Josiah back to the MD for an official weight check. Of course, I did what I threatened to do. I called the pediatrician's office and had him back in there on two days later.
August 1st. I had to settle for a different MD - Josiah's was on vacation (he had some nerve when I was ready to gloat :). Josiah was weighed. 15lbs 11oz. Crap!!!! A momentary disappointment, followed by "Hey! He gained over 2 lbs in less than 8 weeks." If I hadn't thought he weighed almost 17, I'd have been dancing down the hallway at the pediatrician's office. Unfortunately, I did think he weighed more. Oh well! I made one more appointment for mid-August in preparation for the audiology clinic appointment.
Mid-August....back to the pediatrician. 9 month visit (one month late), weight check, and ear check. Weigh-in - 15lbs 3oz - OUCH! It was an 8oz weight loss in 10 days. Damn! It's the never ending roller coaster. Well, it wasn't that bad. Josiah's regular pediatrician was back. Despite the 8oz weight loss, the MD was thrilled with the 2 lb weight gain over 2 months. Things are moving up, slowly but surely. (Kel, needless-to-say, I never got the satisfaction of the FU smile lol).
No shots for the 9-month check - thank goodness! Even better, Josiah had no fluid in his ears. That should bode well for audiology! Right???
So that's that. The weight is improving but not as quickly as "they" would like, sometimes. We're just muddling through day by day. We smile at every little accomplishment. We dream of the next one. We continue to watch with amazement, the blessings we have been gifted.
Next stop, Boston....the audiology appointment. I love walking into that clinic. You enter into a professional building on a busy city street. You pass the security desk, press the elevator button, and ultimately reach the destination. As the elevator doors open, the first visible 'landmark' is the Big Bird on the wall. He silently stands there to greet you, as if to say "Welcome."
We were there early....40 minutes early. Josiah was called fairly quickly - impressive in itself. They checked his ears for fluid and found none (YAY!!!!). He didn't like the ear probes. Therefore, the test result was not perfect. Ok, step 2. I carried Josiah into the testing room. He sat on my lap. An MD sat in front of us facing Josiah. She acted goofy in an effort to maintain his attention. Now the 'test' began. Noises (varying from tones to music to voices) would sound (in varying volume levels). They wanted Josiah to turn his head left or right - to correspond with the direction of the 'noise.' Well, he did - sometimes. His facial expression changed EVERY time indicating he could hear. However, he picked and chose when he wanted to turn his head.
They say the test was inconclusive. They say "developmentally" he's still a bit young for this test. Really???? I say....he thought their test was stupid :)
We'll go back, again, in a couple of months. Until then, Josiah continues to inspire me everyday <3. I love you, little man!
August 1st. I had to settle for a different MD - Josiah's was on vacation (he had some nerve when I was ready to gloat :). Josiah was weighed. 15lbs 11oz. Crap!!!! A momentary disappointment, followed by "Hey! He gained over 2 lbs in less than 8 weeks." If I hadn't thought he weighed almost 17, I'd have been dancing down the hallway at the pediatrician's office. Unfortunately, I did think he weighed more. Oh well! I made one more appointment for mid-August in preparation for the audiology clinic appointment.
Mid-August....back to the pediatrician. 9 month visit (one month late), weight check, and ear check. Weigh-in - 15lbs 3oz - OUCH! It was an 8oz weight loss in 10 days. Damn! It's the never ending roller coaster. Well, it wasn't that bad. Josiah's regular pediatrician was back. Despite the 8oz weight loss, the MD was thrilled with the 2 lb weight gain over 2 months. Things are moving up, slowly but surely. (Kel, needless-to-say, I never got the satisfaction of the FU smile lol).
No shots for the 9-month check - thank goodness! Even better, Josiah had no fluid in his ears. That should bode well for audiology! Right???
So that's that. The weight is improving but not as quickly as "they" would like, sometimes. We're just muddling through day by day. We smile at every little accomplishment. We dream of the next one. We continue to watch with amazement, the blessings we have been gifted.
Next stop, Boston....the audiology appointment. I love walking into that clinic. You enter into a professional building on a busy city street. You pass the security desk, press the elevator button, and ultimately reach the destination. As the elevator doors open, the first visible 'landmark' is the Big Bird on the wall. He silently stands there to greet you, as if to say "Welcome."
We were there early....40 minutes early. Josiah was called fairly quickly - impressive in itself. They checked his ears for fluid and found none (YAY!!!!). He didn't like the ear probes. Therefore, the test result was not perfect. Ok, step 2. I carried Josiah into the testing room. He sat on my lap. An MD sat in front of us facing Josiah. She acted goofy in an effort to maintain his attention. Now the 'test' began. Noises (varying from tones to music to voices) would sound (in varying volume levels). They wanted Josiah to turn his head left or right - to correspond with the direction of the 'noise.' Well, he did - sometimes. His facial expression changed EVERY time indicating he could hear. However, he picked and chose when he wanted to turn his head.
They say the test was inconclusive. They say "developmentally" he's still a bit young for this test. Really???? I say....he thought their test was stupid :)
We'll go back, again, in a couple of months. Until then, Josiah continues to inspire me everyday <3. I love you, little man!
"Don't ever underestimate me! I would never do that to you."
Accidental Censorship: Who's Blog is This???
I have been remiss in writing here. I wasn't sure why. It has been driving me crazy. I have plenty to say. I love to write. Yet, I haven't been engaged. I certainly have no less enjoyment in my topic. So, I started to think about it. Then, I looked into it. From the start, I averaged 3-4 posts per week. That's approximately 12-16 posts per month. For the past 2 months, I have averaged a total of 7 per month - that's less than 2 per week. It all changed in May and left me asking myself, "Who's blog is this?."
Someone, whom I adore, became concerned that readers might become bored with the blog. See, at the beginning, the majority of my writing was topic-specific. We had a baby with Down Syndrome. We quickly involved early intervention. Then, the truth about his heart became evident. Our 3 month old survived an incredible open-heart surgery. There was much to write; It was mostly about what consumed our thoughts - our baby boy. Thankfully, he came through with flying colors. He healed quickly. His stamina, strength, and weight all started to follow suit. By May, more of my writing included subjects other than Josiah (and his Down Syndrome). Then, I was hit with the suggestion that I was boring my readers. So, with reservation, I introduced the concept of Stone Soup....a catchy title for posts which were 'off topic.' I tried to accommodate. However, I've reached an impasse.
I am the mother of a child with Down Syndrome, true! I am also the mother of two children without an extra chromosome. I am also a wife (who is missing her husband tonight). I am a daughter, niece, sister, sister-in-law, friend, and the list goes on. Everyday, I juggle these roles as best I can (as many do). My life is made up of multiple roles, tasks, chores, worries, obstacles, joys, blessings, achievements, etc. One child does not define me or my life. My children are my life but they do not define my life. I cannot be one role without also being the others. Why?....because that's who I am. That truth exists when I wake up. It exists when I write. It exists when I go to bed.
I am also a writer. I began to write when I was in the second grade. I write when I'm moved to write. I write when I'm inspired. I write when there's something to say. Writing is personal for me. It is one way of sharing my heart with those that I couldn't otherwise. Of course, if people enjoy my writing - it's a plus. However, it's not WHY I write. I don't write for the enjoyment of others, though I love when that happens :). I write because I'm a writer. It's as simple as that. I cannot conform to another's idea of what writing should be, what a topic should be, or what a blog should be.
And so, with excitement, Up The Down Staircase continues - as it was meant to be. I will continue to write about Josiah...his ups, his downs, his growth (both typical and atypical of a child with Down Syndrome), etc. I will also write about the things that make me, me. With you (my reader) I will share, from the heart, my thoughts, feelings, fears, inadequacies, achievements, quirks, etc. That's the way it has to be. It's that, or stop writing....but I can't....I love it too much.
Someone, whom I adore, became concerned that readers might become bored with the blog. See, at the beginning, the majority of my writing was topic-specific. We had a baby with Down Syndrome. We quickly involved early intervention. Then, the truth about his heart became evident. Our 3 month old survived an incredible open-heart surgery. There was much to write; It was mostly about what consumed our thoughts - our baby boy. Thankfully, he came through with flying colors. He healed quickly. His stamina, strength, and weight all started to follow suit. By May, more of my writing included subjects other than Josiah (and his Down Syndrome). Then, I was hit with the suggestion that I was boring my readers. So, with reservation, I introduced the concept of Stone Soup....a catchy title for posts which were 'off topic.' I tried to accommodate. However, I've reached an impasse.
I am the mother of a child with Down Syndrome, true! I am also the mother of two children without an extra chromosome. I am also a wife (who is missing her husband tonight). I am a daughter, niece, sister, sister-in-law, friend, and the list goes on. Everyday, I juggle these roles as best I can (as many do). My life is made up of multiple roles, tasks, chores, worries, obstacles, joys, blessings, achievements, etc. One child does not define me or my life. My children are my life but they do not define my life. I cannot be one role without also being the others. Why?....because that's who I am. That truth exists when I wake up. It exists when I write. It exists when I go to bed.
I am also a writer. I began to write when I was in the second grade. I write when I'm moved to write. I write when I'm inspired. I write when there's something to say. Writing is personal for me. It is one way of sharing my heart with those that I couldn't otherwise. Of course, if people enjoy my writing - it's a plus. However, it's not WHY I write. I don't write for the enjoyment of others, though I love when that happens :). I write because I'm a writer. It's as simple as that. I cannot conform to another's idea of what writing should be, what a topic should be, or what a blog should be.
And so, with excitement, Up The Down Staircase continues - as it was meant to be. I will continue to write about Josiah...his ups, his downs, his growth (both typical and atypical of a child with Down Syndrome), etc. I will also write about the things that make me, me. With you (my reader) I will share, from the heart, my thoughts, feelings, fears, inadequacies, achievements, quirks, etc. That's the way it has to be. It's that, or stop writing....but I can't....I love it too much.
Monday, July 30, 2012
Weighting with Bated Breath
You might think I'm lacking in sleep if you noticed the title of this post, "Weighting" with Bated Breath. Nope! I'm not sleep deprived. It was a pretty cute pun though, huh? I AM waiting with bated breath - for Josiah's next pediatrician's appointment. I want an official weight check.
Yes! You heard me correctly. I WANT a weight check and, for once, I'm excited for what I know will knock their socks off!!!
The weight battle has been, seemingly, a never ending one. At the last visit, he was 4 days shy of 8 months. He weighed 13lbs 2oz. He seemed to average 1/2 lb weight gain per month. June 8th = 13lbs 2oz. The MD was pleased, to say the least. None-the-less, since then, I have avoided weighing him at home.....I don't like how obsessed I get. So, ignorance is bliss! lol. I stopped checking numbers.
Last week, C (the occupational therapist) was here. She remarked that Josiah seemed to be thriving. This was similar to conversations I recently had with his child care specialist and physical therapist. However, I had no numbers to go by....I just wouldn't do it.
Well, finally, curiosity got the best of this Mama. Three days ago, immediately after changing his diaper, I decided to get a "guesstimate" of his weight. I double-checked. I triple-checked. Holy cow! 16lbs 10oz (give or take a little).
That means that in approximately 7 weeks, Josiah has gained a whopping 3+ lbs!!!!
I'm calling the pediatrician's office tomorrow. I'm going to try to get him a weight-check appointment for Wednesday! I want this on record :)
Josiah will be 9 months old in about 2 weeks. Just for fun, I checked the 'blue books' of my other two boys for a comparison. My first, weighed approximately 20lbs at 9 months. My second, approximately 17lbs. Hmmm...... I can't help it - I'm chuckling. This is too funny!
I'll be back soon with the 'official' results.
Yes! You heard me correctly. I WANT a weight check and, for once, I'm excited for what I know will knock their socks off!!!
The weight battle has been, seemingly, a never ending one. At the last visit, he was 4 days shy of 8 months. He weighed 13lbs 2oz. He seemed to average 1/2 lb weight gain per month. June 8th = 13lbs 2oz. The MD was pleased, to say the least. None-the-less, since then, I have avoided weighing him at home.....I don't like how obsessed I get. So, ignorance is bliss! lol. I stopped checking numbers.
Last week, C (the occupational therapist) was here. She remarked that Josiah seemed to be thriving. This was similar to conversations I recently had with his child care specialist and physical therapist. However, I had no numbers to go by....I just wouldn't do it.
Well, finally, curiosity got the best of this Mama. Three days ago, immediately after changing his diaper, I decided to get a "guesstimate" of his weight. I double-checked. I triple-checked. Holy cow! 16lbs 10oz (give or take a little).
That means that in approximately 7 weeks, Josiah has gained a whopping 3+ lbs!!!!
I'm calling the pediatrician's office tomorrow. I'm going to try to get him a weight-check appointment for Wednesday! I want this on record :)
Josiah will be 9 months old in about 2 weeks. Just for fun, I checked the 'blue books' of my other two boys for a comparison. My first, weighed approximately 20lbs at 9 months. My second, approximately 17lbs. Hmmm...... I can't help it - I'm chuckling. This is too funny!
I'll be back soon with the 'official' results.
Sunday, July 29, 2012
Sadness in the Community
My mind has been preoccupied with two young children, taken away too soon. One was a boy, the other a girl. Each lived in a different state. I knew neither. Both had contagious smiles. Both had Down Syndrome.
Little R was about 2. He spent most of his time in a Children's Hospital. Like Josiah, little R had heart defects and had endured surgery. For Josiah, surgery made him whole. For R, the surgeries were many, solutions limited, cures not found. Little R's parents started a bucket list and, with their help, he accomplished many of the tasks on his list. He started a banana split for dinner craze (it became a worldwide phenomenon). He drank (root) beer with his daddy on his 21st (month, that is). He got a speeding ticket (for speeding down the hallway). He enjoyed life, love, and many snuggles. Finally, he found peace in his mother's arms.
Little K was 4. She was a typical little girl. She enjoyed her family, her brothers, her life. Recently, after climbing behind a bureau, she became the victim of positional asphyxiation. She was gone in the blink of an eye. News spread almost immediately throughout the DS community. Prayers were being sent up to Heaven from all corners. God had a different plan - he wanted K and so it was.
Josiah doesn't make us sad. His DS doesn't make us sad. We love his smiles. We love his curiosity. We love his strength, courage, determination, and will. He is like so many other children with, and without, DS. Perhaps that's why it's sad when we lose another precious life. All kids are precious, but there's something 'a little extra' special with our kids and the entire DS community knows it.
Prayers continue for the families who's children have gone Home.
I'm feeling very blessed for a wonderful family, beautiful children, hearts that are whole, and a life gifted by God.
Little R was about 2. He spent most of his time in a Children's Hospital. Like Josiah, little R had heart defects and had endured surgery. For Josiah, surgery made him whole. For R, the surgeries were many, solutions limited, cures not found. Little R's parents started a bucket list and, with their help, he accomplished many of the tasks on his list. He started a banana split for dinner craze (it became a worldwide phenomenon). He drank (root) beer with his daddy on his 21st (month, that is). He got a speeding ticket (for speeding down the hallway). He enjoyed life, love, and many snuggles. Finally, he found peace in his mother's arms.
Little K was 4. She was a typical little girl. She enjoyed her family, her brothers, her life. Recently, after climbing behind a bureau, she became the victim of positional asphyxiation. She was gone in the blink of an eye. News spread almost immediately throughout the DS community. Prayers were being sent up to Heaven from all corners. God had a different plan - he wanted K and so it was.
Josiah doesn't make us sad. His DS doesn't make us sad. We love his smiles. We love his curiosity. We love his strength, courage, determination, and will. He is like so many other children with, and without, DS. Perhaps that's why it's sad when we lose another precious life. All kids are precious, but there's something 'a little extra' special with our kids and the entire DS community knows it.
Prayers continue for the families who's children have gone Home.
I'm feeling very blessed for a wonderful family, beautiful children, hearts that are whole, and a life gifted by God.
Saturday, July 21, 2012
Stone Soup 072112: Coming Full Circle
Theater. What could be better than that? Perhaps it's not in the minds of most 7 yr olds, but it was in mine. Theater....reaching for the stars....grasping the unreachable....Someday....
At 18, I attended the American Academy of Dramatic Arts in NYC. What an unbelievable experience. I had attended the local School of Performing Arts since it opened (when I was 16), and I found myself teaching there. How sweet life was.
At 22, I walked away from the local school. Looking back, I can't find a reason worthy enough to discuss. I went on new pursuits, for unknown reasons.
I ultimately achieved a Master's Degree. That piece of paper remains in a box in my attic. I have worked in my field for about 15 years, without purpose or cause.
I fell in love with my best friend and subsequently married. Things seemed to be making sense again. Then, one-by-one, each of our boys arrived. Each one fulfilling the person I was destined to become.
Even with Josiah, the trisomy 21, the open heart surgery, my life was shaping into perfection. Then an unexpected reunion.
When my brother passed away in September, I notified my long-lost friend (the director of the local school of performing arts). We emailed a few times. Then, a week later, I arrived at my baby shower. My dear friend was there.
Josiah was born....a started this blog....my friend and I continued to talk.
About a month ago, we reconnected face-to-face. She told me that she wanted to start a program for down sydrome children. What's more? She wants me to run the program!!! OMG!
So, in September, our new adventure begins. In a local, well-established, school of performing arts, we introduce the Down Syndrome Program for children.
It's amazing how life works. It's funny how dreams are fulfilled, just not always they way we 'thought they would.'
Life always comes full circle. I know that's true for me.
At 18, I attended the American Academy of Dramatic Arts in NYC. What an unbelievable experience. I had attended the local School of Performing Arts since it opened (when I was 16), and I found myself teaching there. How sweet life was.
At 22, I walked away from the local school. Looking back, I can't find a reason worthy enough to discuss. I went on new pursuits, for unknown reasons.
I ultimately achieved a Master's Degree. That piece of paper remains in a box in my attic. I have worked in my field for about 15 years, without purpose or cause.
I fell in love with my best friend and subsequently married. Things seemed to be making sense again. Then, one-by-one, each of our boys arrived. Each one fulfilling the person I was destined to become.
Even with Josiah, the trisomy 21, the open heart surgery, my life was shaping into perfection. Then an unexpected reunion.
When my brother passed away in September, I notified my long-lost friend (the director of the local school of performing arts). We emailed a few times. Then, a week later, I arrived at my baby shower. My dear friend was there.
Josiah was born....a started this blog....my friend and I continued to talk.
About a month ago, we reconnected face-to-face. She told me that she wanted to start a program for down sydrome children. What's more? She wants me to run the program!!! OMG!
So, in September, our new adventure begins. In a local, well-established, school of performing arts, we introduce the Down Syndrome Program for children.
It's amazing how life works. It's funny how dreams are fulfilled, just not always they way we 'thought they would.'
Life always comes full circle. I know that's true for me.
Friday's Facts 062912: Sandal Gap
I had heard of this before, and I haven't been able to find very much information on the topic. Nonetheless, I thought I'd throw it out there....for what it's worth.
Some children with Down Syndrome are born with an extra large space between their big toe and second toe, otherwise known as sandal gap. This is considered a soft medical marker for Down Syndrome; only 45% of those with Down Syndrome have this gap.
Sandal gap is actually a medial displacement of the big toe which causes a larger than normal gap between the big toe and second toe. The space also dips lower into the foot than 'usual'.
Josiah does not have the sandal gap. He doesn't have the palmer crease. He doesn't have short, stubby, fingers. A lot of the 'soft' markers escaped Josiah. So, I always find them interesting to read about.
Some children with Down Syndrome are born with an extra large space between their big toe and second toe, otherwise known as sandal gap. This is considered a soft medical marker for Down Syndrome; only 45% of those with Down Syndrome have this gap.
Sandal gap is actually a medial displacement of the big toe which causes a larger than normal gap between the big toe and second toe. The space also dips lower into the foot than 'usual'.
Josiah does not have the sandal gap. He doesn't have the palmer crease. He doesn't have short, stubby, fingers. A lot of the 'soft' markers escaped Josiah. So, I always find them interesting to read about.
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