"This baby will make life miserable for your other two boys." "He will be a burden." That's what someone told us upon hearing that we were choosing to keep Josiah (and his extra 21st chromosome).
Studies indicate that siblings of individuals who have Down syndrome demonstrate higher levels of maturity, acceptance, wisdom, and empathy, as compared to their peers. In short, they are better people :)
From the moment we told the older boys that we were expecting Josiah, they looked forward to meeting their partner in crime. When I told them that Josiah had Down syndrome, it was of no consequence to them. Josiah was their brother, and they were waiting to love him.
When Josiah was born, he was immediately accepted.
Josiah is just one of the boys. He is loved and adored. The older boys play with him, talk to him, include him, hug him, kiss him, and share their toys with him. With their brother, the older boys demonstrate patience, humility, and grace.
Josiah belongs here. He belongs with us. He's one of us.
It would only have been miserable, if we had not had the opportunity to call Josiah ours.
We are truly blessed.
Thursday, October 3, 2013
Wednesday, October 2, 2013
31 for 21 Challenge: Day Two. Audiology
When Josiah was born, he failed his newborn hearing screen. We were sent for a follow up a few weeks later. Although he passed, he already demonstrated 'borderline normal/mild hearing loss.' It was explained that this is common in children with Down syndrome. In part, their particularly small ear canals can play a role.
Josiah has had audiology follow-ups locally, as well as at Children's. At Children's, the results are always 'inconclusive.' Locally, they tell us Josiah can hear, but not as well as other children his age. Simply put, his inner eardrum could hear at 0.3 & 0.5 levels. Listening to speech, he could hear sounds as quiet as 25 db (normal is 20 db or less). Hence, he is always labeled 'borderline normal/mild hearing loss.'
Three weeks ago, Josiah got tubes in his ears.
Today, we went locally for a audiology follow-up. His inner eardrum could hear at levels 1.3 & 1.6. The tubes have more-than-doubled his capacity to hear. While listening to speech, he could hear sounds as quiet as 10 db. The results were NORMAL!!! His hearing falls within normal limits!!!
We go to bed tonight, very grateful....as always :)
Josiah has had audiology follow-ups locally, as well as at Children's. At Children's, the results are always 'inconclusive.' Locally, they tell us Josiah can hear, but not as well as other children his age. Simply put, his inner eardrum could hear at 0.3 & 0.5 levels. Listening to speech, he could hear sounds as quiet as 25 db (normal is 20 db or less). Hence, he is always labeled 'borderline normal/mild hearing loss.'
Three weeks ago, Josiah got tubes in his ears.
Today, we went locally for a audiology follow-up. His inner eardrum could hear at levels 1.3 & 1.6. The tubes have more-than-doubled his capacity to hear. While listening to speech, he could hear sounds as quiet as 10 db. The results were NORMAL!!! His hearing falls within normal limits!!!
We go to bed tonight, very grateful....as always :)
Tuesday, October 1, 2013
31 for 21 Challenge: Day 1: DS Awareness
October marks Down syndrome awareness month. I have decided to, once again, participate in the 31 for 21 challenge. This means that each day during the month of October, I will post a fact/thought/etc about Down syndrome. It is all in an effort to raise awareness for Down syndrome.
I was twelve weeks pregnant, when the word 'markers' was used as a warning. A routine test indicated that the skin of the back of Josiah's neck was too thick. This was the first possible sign of a 'problem'.
As the next several weeks passed, more markers became evident. Josiah's leg and arm bones appeared shorter than 'normal.' The bridge to his nose appeared (possibly) flatter. He appeared to have a hole in his heart. As the number of markers grew, so did the chance of a Trisomy 21 diagnosis.
At 19 weeks gestation, we decided to have amnio. We hadn't had the test with our first two boys. This time, it seemed the responsible thing to do. We knew it would either confirm or disprove the theory of a chromosomal abnormality.
48 hours after the amnio, our OB called. I think it was the only time he has ever called our house. The preliminary report was in. Josiah, in fact, had three copies of the 21st chromosome.
We were relieved that it was Down syndrome. Trisomy 13 or Trisomy 18 were two possibilities we had feared. It was neither; We were relieved. That was on a Wednesday.
On Sunday, we decided to share the news with family.
At no time did we ever consider the possibility that we wouldn't keep, and raise, this life we had been gifted. Any suggestions to the like we immediately, and vehemently, discarded.
As Josiah nears his second birthday, I remain in awe of a beautiful boy with an extra chromosome. He has added life, love, laughter, and spirit to our home and family.
We have no regrets.
I was twelve weeks pregnant, when the word 'markers' was used as a warning. A routine test indicated that the skin of the back of Josiah's neck was too thick. This was the first possible sign of a 'problem'.
As the next several weeks passed, more markers became evident. Josiah's leg and arm bones appeared shorter than 'normal.' The bridge to his nose appeared (possibly) flatter. He appeared to have a hole in his heart. As the number of markers grew, so did the chance of a Trisomy 21 diagnosis.
At 19 weeks gestation, we decided to have amnio. We hadn't had the test with our first two boys. This time, it seemed the responsible thing to do. We knew it would either confirm or disprove the theory of a chromosomal abnormality.
48 hours after the amnio, our OB called. I think it was the only time he has ever called our house. The preliminary report was in. Josiah, in fact, had three copies of the 21st chromosome.
We were relieved that it was Down syndrome. Trisomy 13 or Trisomy 18 were two possibilities we had feared. It was neither; We were relieved. That was on a Wednesday.
On Sunday, we decided to share the news with family.
At no time did we ever consider the possibility that we wouldn't keep, and raise, this life we had been gifted. Any suggestions to the like we immediately, and vehemently, discarded.
As Josiah nears his second birthday, I remain in awe of a beautiful boy with an extra chromosome. He has added life, love, laughter, and spirit to our home and family.
We have no regrets.
Friday, September 20, 2013
DS Clinic
Wednesday night, Josiah went to bed at 6:30. The 'big' boys were in bed at 7. We had succeeded in getting them to bed early. C and I were in bed by 10pm. We knew morning would come quickly. We were right.
The alarm went off at 3am. I continued to hit 'snooze' until 3:36am. I couldn't delay this any longer. I was up, showered, and dressed by 4am. At 4:10, we were waking the three children up. Our goal was to leave at 5am. After feeding and dressing the kids, we were only a few minutes late. At 5:17, we were out the door, filling up the gas tank, and headed for the highway. Josiah had his Down syndrome clinic on Thursday. If we don't leave early, traffic can be a nightmare.
At 6:30am, we had made the 30mile drive. We were parked in the garage, one block from Children's. We made our way up to the hospital. The morning had gone smoothly, so far. The big boys played on the musical stairs, then we were off to have breakfast. After eating, we decided to roam around a bit. We checked out a few of the important places C and the boys may want to spend time, while waiting for Josiah and I.
By 7:45am, we were checked in at the DS clinic. We were about 45 minutes early. The first of many checks started. First, height and weight. Josiah weighed in at 27 lbs. He is 33.5" long. Ha!!!!
By 8:30, Josiah and I headed in to meet with the Director of the DS clinic. C and big boys were off to the playground. Josiah and I sat with the MD until almost 10am. Growth was charted. Once upon a time, Josiah's plotted numbers wouldn't land on the growth target. Once upon a time, weight was a huge concern. Once upon a time, they said he was failure to thrive. Once upon a time.... This day, however, was a different story. On the 'normal' growth chart (which Josiah used fall in the 0 percentile), he proved them all wrong. For weight, 56%. Height, 29%. Height to weight ratio, 79%. On the DS chart, he falls in the 90%. That's right, 90%!!!!
Medical history was reviewed. His thyroid from January looked good. He doesn't need to be rechecked until January. Josiah will need a sleep study by the age of 4 as sleep apnea is common in children with DS. Coincidentally, Josiah's tonsils are large - so this is something they will monitor. If all stays the same, Josiah will get a sleep study near his fourth birthday. No other concerns at this time. Yay!!!
We then met with the physical therapist (PT). That was Josiah's favorite part of the morning. He was able to get on the floor and play on the huge mat. He had a blast!!! The PT was impressed with what Josiah is doing. Josiah will continue to get PT through early intervention (EI). Hopefully, walking will be in his near future :)
The meeting with nutrition went well. Josiah is eating well and tolerating a variety of textures and flavors. We are fortunate. Josiah is doing great! The meeting with occupational therapy (OT) went equally as well. Josiah is making huge strides. The OT was thrilled with Josiah's progress thus far.
Upcoming appointments/follow ups were reviewed. During the Fall/Early winter months, we'll revisit orthopedics, ENT, and vision. Dental will continue to be followed locally. Flu shots are this weekend. I was given the option of adding audiology to the day's events. I opted to follow up locally. I will try to get that scheduled for next week. That is that!
It was 12:30 and we had had a great day at clinic. It was fun seeing friends old and new. We will see them all again in the Spring.
We left knowing how lucky we are. We have three beautiful, happy, boys. We revel in the beautiful moments. We take nothing for granted. Life is good!!!
The alarm went off at 3am. I continued to hit 'snooze' until 3:36am. I couldn't delay this any longer. I was up, showered, and dressed by 4am. At 4:10, we were waking the three children up. Our goal was to leave at 5am. After feeding and dressing the kids, we were only a few minutes late. At 5:17, we were out the door, filling up the gas tank, and headed for the highway. Josiah had his Down syndrome clinic on Thursday. If we don't leave early, traffic can be a nightmare.
At 6:30am, we had made the 30mile drive. We were parked in the garage, one block from Children's. We made our way up to the hospital. The morning had gone smoothly, so far. The big boys played on the musical stairs, then we were off to have breakfast. After eating, we decided to roam around a bit. We checked out a few of the important places C and the boys may want to spend time, while waiting for Josiah and I.
By 7:45am, we were checked in at the DS clinic. We were about 45 minutes early. The first of many checks started. First, height and weight. Josiah weighed in at 27 lbs. He is 33.5" long. Ha!!!!
By 8:30, Josiah and I headed in to meet with the Director of the DS clinic. C and big boys were off to the playground. Josiah and I sat with the MD until almost 10am. Growth was charted. Once upon a time, Josiah's plotted numbers wouldn't land on the growth target. Once upon a time, weight was a huge concern. Once upon a time, they said he was failure to thrive. Once upon a time.... This day, however, was a different story. On the 'normal' growth chart (which Josiah used fall in the 0 percentile), he proved them all wrong. For weight, 56%. Height, 29%. Height to weight ratio, 79%. On the DS chart, he falls in the 90%. That's right, 90%!!!!
Medical history was reviewed. His thyroid from January looked good. He doesn't need to be rechecked until January. Josiah will need a sleep study by the age of 4 as sleep apnea is common in children with DS. Coincidentally, Josiah's tonsils are large - so this is something they will monitor. If all stays the same, Josiah will get a sleep study near his fourth birthday. No other concerns at this time. Yay!!!
We then met with the physical therapist (PT). That was Josiah's favorite part of the morning. He was able to get on the floor and play on the huge mat. He had a blast!!! The PT was impressed with what Josiah is doing. Josiah will continue to get PT through early intervention (EI). Hopefully, walking will be in his near future :)
The meeting with nutrition went well. Josiah is eating well and tolerating a variety of textures and flavors. We are fortunate. Josiah is doing great! The meeting with occupational therapy (OT) went equally as well. Josiah is making huge strides. The OT was thrilled with Josiah's progress thus far.
Upcoming appointments/follow ups were reviewed. During the Fall/Early winter months, we'll revisit orthopedics, ENT, and vision. Dental will continue to be followed locally. Flu shots are this weekend. I was given the option of adding audiology to the day's events. I opted to follow up locally. I will try to get that scheduled for next week. That is that!
It was 12:30 and we had had a great day at clinic. It was fun seeing friends old and new. We will see them all again in the Spring.
We left knowing how lucky we are. We have three beautiful, happy, boys. We revel in the beautiful moments. We take nothing for granted. Life is good!!!
A Switch in Therapies
Sometimes change is needed. Recently, we found that to be true.
Josiah was receiving speech and occupational therapy twice per month. That had been the schedule for months. As he nears his second birthday, I wondered if that was enough. After talking to other parents of children with Down syndrome, we decided to switch things up. We reached out to a local rehabilitation center that offers traditional rehab-based therapy.
Josiah was evaluated by their clinicians, two weeks ago, for speech and occupational therapy (OT). He was deemed eligible for both services, twice weekly - that is quadruple the services he had been receiving.
The evaluation for speech deemed him age-appropriate for receptive language skills; he understands everything. His delays, however, in expressive speech were apparent (this was not new news). Josiah says three words. He will be two next month. They have suggested using a communication book. Where Josiah's receptive language skills are so keen, they feel he is a great candidate for such a tool. We are excited to try this new communication aide.
OT will continue to work on fine/gross motor skills. I anticipate huge strides as the number of sessions per month have just multiplied x4. I am excited as change is in the air. Fall will be an exciting time for Josiah. I believe that huge things are going to happen for him.
What an exciting time it is.....
Josiah was receiving speech and occupational therapy twice per month. That had been the schedule for months. As he nears his second birthday, I wondered if that was enough. After talking to other parents of children with Down syndrome, we decided to switch things up. We reached out to a local rehabilitation center that offers traditional rehab-based therapy.
Josiah was evaluated by their clinicians, two weeks ago, for speech and occupational therapy (OT). He was deemed eligible for both services, twice weekly - that is quadruple the services he had been receiving.
The evaluation for speech deemed him age-appropriate for receptive language skills; he understands everything. His delays, however, in expressive speech were apparent (this was not new news). Josiah says three words. He will be two next month. They have suggested using a communication book. Where Josiah's receptive language skills are so keen, they feel he is a great candidate for such a tool. We are excited to try this new communication aide.
OT will continue to work on fine/gross motor skills. I anticipate huge strides as the number of sessions per month have just multiplied x4. I am excited as change is in the air. Fall will be an exciting time for Josiah. I believe that huge things are going to happen for him.
What an exciting time it is.....
Stealing Solitude
When I was a little girl, I loved spending time at my Grandma's house. I especially loved spending Thursday evenings at her house. The Waltons used to air on Thursday nights. My Grandma would sit in her red chair. My aunt would sit on a couch, usually reading her newspaper. I would sit on the floor, toys spread out around me. For an hour, we would sit and watch the show we adored.
I used to marvel at John Boy. He was the oldest of the Walton children. In the show, he was depicted as a high school student - later a college student. Inevitably, during each episode, the viewer would observe John Boy sitting at his desk. The desk was nestled beneath a window in his bedroom; It looked out into the front yard. There, he would write.
He would write about his family. He would write about recent events . He would write about his desires. He never sought to embellish but merely to tell a story. Yes, sometimes the stories were big (such as when he witnessed the Hindenburg explode). That was not the norm, though. Usually, he was telling about a first kiss, or of an old woman drinking bootleg whiskey (unknowingly).
It seemed already, to me, that most writers sought drama. How many twists and turns could a show provide? How many intrigues could a story include? I guess that's why I was enamored by the Waltons. I was enamored by John Boy and his prolific ability to write of the simplicities of life. That's where my passion for writing began. It's where I first learned of the importance of the "little things". Every story does not need to involve drama, intrigue, betrayal, and murder. A good story can tell of a poplar tree, a child giggling, a first kiss. Yes, the older I become, the more important these things are to me.
In today's hustle and bustle, I sometimes struggle to find time for those little things: the time to write in the blog, time to just "be." Sometimes they happen without notice (whilst collapsed in exhaustion). Sometimes, there just isn't time.
As summer ended, Fall crept in like a thief in the night. Suddenly, we are in the throws of school, EI, therapies, playgroups, doctor's appointments, and extra curricular activities. Just as morning comes too quickly, so does bedtime. It seems harder and harder to find those moments of peace, those moments of solitude.
How very important they are for the mind and soul. I will endeavor to find time for those little things. Stealing solitude - how very important it is.
I used to marvel at John Boy. He was the oldest of the Walton children. In the show, he was depicted as a high school student - later a college student. Inevitably, during each episode, the viewer would observe John Boy sitting at his desk. The desk was nestled beneath a window in his bedroom; It looked out into the front yard. There, he would write.
He would write about his family. He would write about recent events . He would write about his desires. He never sought to embellish but merely to tell a story. Yes, sometimes the stories were big (such as when he witnessed the Hindenburg explode). That was not the norm, though. Usually, he was telling about a first kiss, or of an old woman drinking bootleg whiskey (unknowingly).
It seemed already, to me, that most writers sought drama. How many twists and turns could a show provide? How many intrigues could a story include? I guess that's why I was enamored by the Waltons. I was enamored by John Boy and his prolific ability to write of the simplicities of life. That's where my passion for writing began. It's where I first learned of the importance of the "little things". Every story does not need to involve drama, intrigue, betrayal, and murder. A good story can tell of a poplar tree, a child giggling, a first kiss. Yes, the older I become, the more important these things are to me.
In today's hustle and bustle, I sometimes struggle to find time for those little things: the time to write in the blog, time to just "be." Sometimes they happen without notice (whilst collapsed in exhaustion). Sometimes, there just isn't time.
As summer ended, Fall crept in like a thief in the night. Suddenly, we are in the throws of school, EI, therapies, playgroups, doctor's appointments, and extra curricular activities. Just as morning comes too quickly, so does bedtime. It seems harder and harder to find those moments of peace, those moments of solitude.
How very important they are for the mind and soul. I will endeavor to find time for those little things. Stealing solitude - how very important it is.
Tuesday, August 6, 2013
What's That Sound?
Last weekend was spectacular. On Saturday, we attended our town's annual celebration. On Sunday, we went to a nearby historic home that hosts an annual family fun day. Both days were beautiful. The kids got out some excess energy; They breathed in lots of fresh air.
On Monday, we had a bit of a break. The EI (early intervention) coordinator was away on vacation, so Josiah had a Monday off. On Tuesday, his speech therapist came. Josiah spent the hour fussing and trying to avoid her. There's more of a story but I'll spare you the agony. Suffice to say, we're not impressed. On Wednesday, the PT (physical therapist) worked with Josiah. He sometimes complains when he has to work, but this day he cried incessantly.
Thursday, we made an appointment with the the pediatrician. The 3 year old had been coughing (mildly) for two days. I suspected Josiah might have an ear infection. In the end, the 3 year old was diagnosed with a mild case of croup. Josiah's ears were pink but not infected. Home we journeyed.
If you haven't experienced croup, it's interesting. When our little one first got croup (about a year ago), he emerged from his bedroom with the 'infamous' cough. C sat straight up and said, "What the hell is that?" It is that striking. The sound of a croup cough is often compared to that of a barking seal. It is caused by swelling of the larynx (voice box) and trachea (windpipe). It is caused, generally, by a virus. It is most common in children three and under.
Our week proceeded. On Friday, the 6 year old had a friend over. We went to a playground. It was a good day. Josiah went to bed around 8pm. Around 9pm, we were startled by Josiah's cries. Running into his room, I found him - eyes wide open - gasping for air. It is a scary thing. Within minutes, we had everyone packed into the van and were headed to the nearest e.r.
At the hospital, Josiah received his first steroid shot (which helped immensely). He was diagnosed with a severe case of croup, complete with stridor cough. For those of you that don't know, stridor is a noisy, harsh breathing that occurs when a child inhales. It is frightening sound. By 1am, we were heading home with all our babies. We were grateful.
Saturday morning, our six year old hurried out of his bedroom. He had to pee. Normally, I wouldn't have been startled. Perhaps it was the cough that accompanied his expeditious walk. It was the same cough that once made C sit up and ask, "What the hell is that?" Yes, I was sure. He, too, had the croup.
We were able to snag an 11:15 appointment with the pediatrician. In the end, the 6 year old had croup and conjunctivitis. The 3 year old's croup was the same but he was developing an ear infection. Josiah was 'croupy' but also had a full blown ear infection. After a couple of stops, we arrived home with one more humidifier, steroids for two children, antibiotics for two children, nebulizer meds for one child, and eye drops for another.
That was Saturday. Sunday, Monday, and today have been relatively peaceful. The steroids are done. We just have antibiotics and eye drops to administer. The kids are quickly getting back to normal. What's that sound? Now, it's the sound of (basically) healthy kids.
Be well, my friends :)
On Monday, we had a bit of a break. The EI (early intervention) coordinator was away on vacation, so Josiah had a Monday off. On Tuesday, his speech therapist came. Josiah spent the hour fussing and trying to avoid her. There's more of a story but I'll spare you the agony. Suffice to say, we're not impressed. On Wednesday, the PT (physical therapist) worked with Josiah. He sometimes complains when he has to work, but this day he cried incessantly.
Thursday, we made an appointment with the the pediatrician. The 3 year old had been coughing (mildly) for two days. I suspected Josiah might have an ear infection. In the end, the 3 year old was diagnosed with a mild case of croup. Josiah's ears were pink but not infected. Home we journeyed.
If you haven't experienced croup, it's interesting. When our little one first got croup (about a year ago), he emerged from his bedroom with the 'infamous' cough. C sat straight up and said, "What the hell is that?" It is that striking. The sound of a croup cough is often compared to that of a barking seal. It is caused by swelling of the larynx (voice box) and trachea (windpipe). It is caused, generally, by a virus. It is most common in children three and under.
Our week proceeded. On Friday, the 6 year old had a friend over. We went to a playground. It was a good day. Josiah went to bed around 8pm. Around 9pm, we were startled by Josiah's cries. Running into his room, I found him - eyes wide open - gasping for air. It is a scary thing. Within minutes, we had everyone packed into the van and were headed to the nearest e.r.
At the hospital, Josiah received his first steroid shot (which helped immensely). He was diagnosed with a severe case of croup, complete with stridor cough. For those of you that don't know, stridor is a noisy, harsh breathing that occurs when a child inhales. It is frightening sound. By 1am, we were heading home with all our babies. We were grateful.
Saturday morning, our six year old hurried out of his bedroom. He had to pee. Normally, I wouldn't have been startled. Perhaps it was the cough that accompanied his expeditious walk. It was the same cough that once made C sit up and ask, "What the hell is that?" Yes, I was sure. He, too, had the croup.
We were able to snag an 11:15 appointment with the pediatrician. In the end, the 6 year old had croup and conjunctivitis. The 3 year old's croup was the same but he was developing an ear infection. Josiah was 'croupy' but also had a full blown ear infection. After a couple of stops, we arrived home with one more humidifier, steroids for two children, antibiotics for two children, nebulizer meds for one child, and eye drops for another.
That was Saturday. Sunday, Monday, and today have been relatively peaceful. The steroids are done. We just have antibiotics and eye drops to administer. The kids are quickly getting back to normal. What's that sound? Now, it's the sound of (basically) healthy kids.
Be well, my friends :)
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