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!!!
Showing posts with label down syndrome clinic. Show all posts
Showing posts with label down syndrome clinic. Show all posts
Friday, September 20, 2013
Wednesday, July 10, 2013
Making a List and Checking it Twice
No, I have not been Christmas shopping. I have not even started that list yet. However, I have had a running tally of appointments that I was supposed to make and hadn't gotten around to it yet. So, this morning, I took the bull by the horns and grabbed my phone.
Josiah was first seen by audiology shortly after birth. He had failed his newborn screening. He was essentially cleared. We were supposed to follow up with them at one year. Well, Josiah was checked by audiology at Children's twice since then. Both times, results were inconclusive. So, we decided to schedule this follow up for the local office (where he had had his first screening). By the end of next week, that follow up will be done!
I had scheduled Josiah for his first dental appointment back in January. Kids with DS tend to have increased levels of bacteria in their mouths. They also tend to have more dental issues. Well, his DS clinic was in January. I jumped to the conclusion that he would be seen by dental at the clinic. As circumstances would have it, the dental staff was at a conference the day we were they. Therefore, Josiah was never seen. I've been meaning to call our local office to reschedule that. By the end of next week, that appointment will be completed! (And, as luck would have it, they are able to see the older boys at the same time).
Oh yeah, when I talked to the dental office, they asked about Josiah's health. When I told them about Josiah's OHS (open heart surgery) last January, they asked for something in writing from the cardiologist. They need to know if Josiah requires pre-meds for dental visits. Wow!!! Not once have I ever considered that possibility. I said, " I don't think so." As I thought about it more though, I wonder.... My Mom has a steel plate in her toe and requires antibiotics before dental work. Josiah's sternum was put back together with steel ties after surgery. Hmmmm. Well, needless-to-say, I have a call in to the cardiology department. I'm waiting to hear from them.
Meanwhile, Josiah's orthopedic appointment is in a few weeks; His next DS clinic is in September; and, his next vision follow up is in October.
There!!!! I did it.
Now, I just need to call the pediatrician's office at the end of August to schedule his flu shot.
My theme this week: It truly is the little things :)
Josiah was first seen by audiology shortly after birth. He had failed his newborn screening. He was essentially cleared. We were supposed to follow up with them at one year. Well, Josiah was checked by audiology at Children's twice since then. Both times, results were inconclusive. So, we decided to schedule this follow up for the local office (where he had had his first screening). By the end of next week, that follow up will be done!
I had scheduled Josiah for his first dental appointment back in January. Kids with DS tend to have increased levels of bacteria in their mouths. They also tend to have more dental issues. Well, his DS clinic was in January. I jumped to the conclusion that he would be seen by dental at the clinic. As circumstances would have it, the dental staff was at a conference the day we were they. Therefore, Josiah was never seen. I've been meaning to call our local office to reschedule that. By the end of next week, that appointment will be completed! (And, as luck would have it, they are able to see the older boys at the same time).
Oh yeah, when I talked to the dental office, they asked about Josiah's health. When I told them about Josiah's OHS (open heart surgery) last January, they asked for something in writing from the cardiologist. They need to know if Josiah requires pre-meds for dental visits. Wow!!! Not once have I ever considered that possibility. I said, " I don't think so." As I thought about it more though, I wonder.... My Mom has a steel plate in her toe and requires antibiotics before dental work. Josiah's sternum was put back together with steel ties after surgery. Hmmmm. Well, needless-to-say, I have a call in to the cardiology department. I'm waiting to hear from them.
Meanwhile, Josiah's orthopedic appointment is in a few weeks; His next DS clinic is in September; and, his next vision follow up is in October.
There!!!! I did it.
Now, I just need to call the pediatrician's office at the end of August to schedule his flu shot.
My theme this week: It truly is the little things :)
Sunday, February 3, 2013
DS Clinic
Josiah had his second visit to the Down Syndrome Clinic. We were up at 4am; we woke the boys at 5am. We knew it was going to be a family trip; we had to leave too early for school to be an option. We were only five minutes late leaving. 6:20am - we left the house.
It's amazing that traffic can be such a nightmare at that early hour of the morning. Of course, when you take into account the rain, it stands to reason. None-the-less, we arrived at our destination at 8:20, parked, and walked into the lobby at 8:40. Official check in time is 8:30, so C and the big boys headed for breakfast. Josiah and I headed up to the DS clinic.
By 9am, he was getting height/weight checked. Height 29.5 inches. Weight 21lbs 5oz. Yay!!! The boys joined me upstairs after a short time. They came bearing Mama's breakfast - so sweet.
Before long, we were called in to see PT (physical therapy). A nice padded mat was on the floor. On it, were several fun toys. Josiah was pleased to have some floor time, especially after the long car ride in. He cleverly showed off his ability to roll, sit, get into and out of sitting, side-sit, and the like. Josiah was proud to demonstrate his ability to get onto all fours and rock back and forth. He even scooted forward a little. The PT told us what we have known for weeks - Josiah is just on the cusp of crawling. It's going to happen any day now.
Next, we met with nutrition. The meeting was brief. Josiah's weight is no longer a concern. His height to weight ratio is the 50th percentile....so he's simply perfect :)
Next stop - Dr. D, whom we adore. Josiah was happy to smile for her. Dr. D. was proud of how far he has come since June. She is very pleased with his progress.
Final stop, this time, was OT (occupational therapy). It was close to 12:30 and Josiah had reached the end of his tolerance. He was in tears by the time we reached the last room. I quickly pulled out a few jars of baby food. He ate. He nibbled on a few goodies, from the OT. She wanted to watch him eat. Finally, he nursed and fell asleep in my arms. He was a shot little tot. It was around 1pm. He had reached the end of the road. Best of all, everyone is pleased with his progress.
The day would have been longer, but a few hiccups made for a shorter day. The dentist was at a conference, so we couldn't check in with them. Josiah is being treated for an ear infection, so audiology was off the table. We also need to schedule a cardiology follow up, as well as a first vision appt. So, four appointments to go....all outpatient and closer to home.
By the time we stopped in the cafe for lunch and made our way home, it was about 4pm. We were exhausted but very content.
This little miracle continues to amaze us everyday. Our life is so very blessed.
It's amazing that traffic can be such a nightmare at that early hour of the morning. Of course, when you take into account the rain, it stands to reason. None-the-less, we arrived at our destination at 8:20, parked, and walked into the lobby at 8:40. Official check in time is 8:30, so C and the big boys headed for breakfast. Josiah and I headed up to the DS clinic.
By 9am, he was getting height/weight checked. Height 29.5 inches. Weight 21lbs 5oz. Yay!!! The boys joined me upstairs after a short time. They came bearing Mama's breakfast - so sweet.
Before long, we were called in to see PT (physical therapy). A nice padded mat was on the floor. On it, were several fun toys. Josiah was pleased to have some floor time, especially after the long car ride in. He cleverly showed off his ability to roll, sit, get into and out of sitting, side-sit, and the like. Josiah was proud to demonstrate his ability to get onto all fours and rock back and forth. He even scooted forward a little. The PT told us what we have known for weeks - Josiah is just on the cusp of crawling. It's going to happen any day now.
Next, we met with nutrition. The meeting was brief. Josiah's weight is no longer a concern. His height to weight ratio is the 50th percentile....so he's simply perfect :)
Next stop - Dr. D, whom we adore. Josiah was happy to smile for her. Dr. D. was proud of how far he has come since June. She is very pleased with his progress.
Final stop, this time, was OT (occupational therapy). It was close to 12:30 and Josiah had reached the end of his tolerance. He was in tears by the time we reached the last room. I quickly pulled out a few jars of baby food. He ate. He nibbled on a few goodies, from the OT. She wanted to watch him eat. Finally, he nursed and fell asleep in my arms. He was a shot little tot. It was around 1pm. He had reached the end of the road. Best of all, everyone is pleased with his progress.
The day would have been longer, but a few hiccups made for a shorter day. The dentist was at a conference, so we couldn't check in with them. Josiah is being treated for an ear infection, so audiology was off the table. We also need to schedule a cardiology follow up, as well as a first vision appt. So, four appointments to go....all outpatient and closer to home.
By the time we stopped in the cafe for lunch and made our way home, it was about 4pm. We were exhausted but very content.
This little miracle continues to amaze us everyday. Our life is so very blessed.
Wednesday, June 6, 2012
Steady Progress
Since Josiah's EI assessment, things have been moving steadily along.
Last week, Josiah met with D for physical therapy. Once again, he was (apparently) out to impress. D repeatedly put him on his tummy; he repeatedly tolerated it. D was thrilled, again. Josiah performs tummy tricks like a trooper. He has started to utilize weight bearing in his arms, as shown here:
He is also starting to pull his legs under him. These are two great steps towards crawling.
Although I don't have pictures yet, Josiah has started "side sitting." He hates it, but is started to "feel" it. I'll get some pics soon.
Josiah worked with K this week, if you can call it work. For the first time ever, Josiah genuinely appeared to be 'lazy'. He showed no interest in working. It was hysterical! He didn't want to roll over. He didn't want to cooperate with tummy time. He wanted no part of his session. He was interested in casual play, feeding, and sleeping....too funny :)
I'm still waiting on the detailed notes from the assessment; I will post once available.
Meanwhile, I weighed Josiah yesterday. It's only an estimate BUT he weighed in at approximately 13.6 lbs. It's a definite weight gain.
Josiah will attend his first DS Clinic tomorrow. We only have vague information regarding what will transpire there. I'll look forward to telling you all about it.....
Last week, Josiah met with D for physical therapy. Once again, he was (apparently) out to impress. D repeatedly put him on his tummy; he repeatedly tolerated it. D was thrilled, again. Josiah performs tummy tricks like a trooper. He has started to utilize weight bearing in his arms, as shown here:
He is also starting to pull his legs under him. These are two great steps towards crawling.
Although I don't have pictures yet, Josiah has started "side sitting." He hates it, but is started to "feel" it. I'll get some pics soon.
Josiah worked with K this week, if you can call it work. For the first time ever, Josiah genuinely appeared to be 'lazy'. He showed no interest in working. It was hysterical! He didn't want to roll over. He didn't want to cooperate with tummy time. He wanted no part of his session. He was interested in casual play, feeding, and sleeping....too funny :)
I'm still waiting on the detailed notes from the assessment; I will post once available.
Meanwhile, I weighed Josiah yesterday. It's only an estimate BUT he weighed in at approximately 13.6 lbs. It's a definite weight gain.
Josiah will attend his first DS Clinic tomorrow. We only have vague information regarding what will transpire there. I'll look forward to telling you all about it.....
Tuesday, June 5, 2012
Friday's Facts 060112: A New Parent's Checklist
This is a great checklist I found for new parents of a child with Down Syndrome. It was written for parents living in the Pennsylvania area but has been edited, here, for people living in the Massachusetts area.
1. Contact the Down Syndrome Clinic at Boston Children's Hospital (857-218-4329) or Massachusetts General Hospital (617-643-8912).
2. Contact NDSS (National Down Syndrome Society) at 1-800-221-4602.
3. Contact MDSC (Massachusetts Down Syndrome Congress) at 1-800-664-MDSC.
4. Contact Early Intervention at 1-800-905-TIES or http://www.massfamilyties.org. EI is a statewide, integrated, developmental service available to all families of children between birth and three years of age. EI provides family-centered services that facilitate the developmental progress of children.
5. Apply for Social Security Income (1-800-772-1213) & Mass Health/Medicare (1-888-665-9993 or http://www.masshealth.gov).
SSI is a federal program of the Social Security Administration that provides monthly cash benefits and automatic MassHealth coverage for a child with special medical needs. Families with low to moderate income and limited resources may be eligible for SSI. Families whose income or resources exceed the limits of MassHealth Standard may be eligible for Commonhealth. Commonhealth is a state program that may charge a premium for MassHealth through a sliding fee based on income and family size.
6. Take a copy of the following to your pediatrician:
1. The Down Syndrome Health care Guidelines (available at http://www.ndss.org)
2. Contact info for the DS Clinic at BCH or MG
3. Growth charts for children with Down Syndrome (available at http://www.ndss.org)
1. Schedule an echocardiogram with a pediatric cardiologist.
Babies with Down syndrome are sometimes born with heart defects. It is important to identify any cardiac issues as soon as possible so treatment options can be discussed.
All babies with Down syndrome should have an echocardiogram by 3 months of age.
2. Schedule an appointment with a pediatric audiologist.
The ability to hear affects the ability to speak, so it is important to have your baby’s hearing checked.
Your child should receive a newborn hearing screen with an audiologist by 3 months of age (this is in addition to the newborn hearing screen that is routinely done before leaving the hospital). All babies should see an audiologist every 6 months until age 3 and then yearly.
3. Schedule an appointment with a pediatric ophthalmologist.
All babies with Down syndrome should receive an ophthalmological evaluation by 6 months of age and then yearly.
4. Schedule a thyroid function test.
Children with Down syndrome are at a higher risk of having abnormal thyroid levels, so it is important that your child’s thyroid levels be checked regularly.
All babies with Down syndrome should have their thyroid levels tested at birth, at 6 months of age, at 1 year of age, and then yearly.
Newborn checklist
1. Contact the Down Syndrome Clinic at Boston Children's Hospital (857-218-4329) or Massachusetts General Hospital (617-643-8912).
2. Contact NDSS (National Down Syndrome Society) at 1-800-221-4602.
3. Contact MDSC (Massachusetts Down Syndrome Congress) at 1-800-664-MDSC.
4. Contact Early Intervention at 1-800-905-TIES or http://www.massfamilyties.org. EI is a statewide, integrated, developmental service available to all families of children between birth and three years of age. EI provides family-centered services that facilitate the developmental progress of children.
5. Apply for Social Security Income (1-800-772-1213) & Mass Health/Medicare (1-888-665-9993 or http://www.masshealth.gov).
SSI is a federal program of the Social Security Administration that provides monthly cash benefits and automatic MassHealth coverage for a child with special medical needs. Families with low to moderate income and limited resources may be eligible for SSI. Families whose income or resources exceed the limits of MassHealth Standard may be eligible for Commonhealth. Commonhealth is a state program that may charge a premium for MassHealth through a sliding fee based on income and family size.
6. Take a copy of the following to your pediatrician:
1. The Down Syndrome Health care Guidelines (available at http://www.ndss.org)
2. Contact info for the DS Clinic at BCH or MG
3. Growth charts for children with Down Syndrome (available at http://www.ndss.org)
3-month checklist
1. Schedule an echocardiogram with a pediatric cardiologist.
Babies with Down syndrome are sometimes born with heart defects. It is important to identify any cardiac issues as soon as possible so treatment options can be discussed.
All babies with Down syndrome should have an echocardiogram by 3 months of age.
2. Schedule an appointment with a pediatric audiologist.
The ability to hear affects the ability to speak, so it is important to have your baby’s hearing checked.
Your child should receive a newborn hearing screen with an audiologist by 3 months of age (this is in addition to the newborn hearing screen that is routinely done before leaving the hospital). All babies should see an audiologist every 6 months until age 3 and then yearly.
3. Schedule an appointment with a pediatric ophthalmologist.
All babies with Down syndrome should receive an ophthalmological evaluation by 6 months of age and then yearly.
4. Schedule a thyroid function test.
Children with Down syndrome are at a higher risk of having abnormal thyroid levels, so it is important that your child’s thyroid levels be checked regularly.
All babies with Down syndrome should have their thyroid levels tested at birth, at 6 months of age, at 1 year of age, and then yearly.
Wednesday, March 7, 2012
Yesterday's Visit to Children's
Jesse had the day off yesterday, due to teacher conferences. So, he and James went to my parents house for the afternoon. Carl and I headed to Children's with Josiah.
It was our first visit to the Developmental Medicine Center/DS clinic. A was quick to meet us; she had paid Josiah and I a visit after his surgery. She finally had the chance to meet Carl. Josiah was weighed and measured. He weighed in at 9lb 4.15oz. At best, he's gained 3oz; At worst, he's gained 1oz since Friday. We met, first, with the nutritionist, then the feeding specialist. There were several good conclusions to our conversation. First, it is unlikely that this is medically based (ie, gastrointestinal issues, absorption issues, etc). Josiah seems well on all accounts. Second, it is not a feeding issue - Josiah is doing well breastfeeding. Third, there is nothing "wrong" with me.
The final assessment:
Josiah simply needs more calories than he is currently getting. As breast milk and formula both register at approximately 20 calories per ounce, Josiah likely needs more calories per oz.
Solution:
1. Nurse Josiah as we've been doing. Immediately after each feeding, offer him 2oz of fortified formula or breast milk (breast milk or formula with added formula mixed in).
2. Pump 2-3 times per day to increase my own supply, per KF's advice.
I love when problems and solutions are fairly simple. This seems to be the case here. I am so thankful.
This morning, Josiah had 1 interrupted feeding. Two hours later, he had his second (and full) feeding. He was immediately offered a 2oz bottle of fortified formula and he consumed the entire bottle. He was given a second bottle, and consumed an additional oz. I think we're off to a good start. I'll wait until noon, and start the next round.
Tomorrow, we return to the pediatrician for a weight check. I'm hoping we can pack on a few ounces today lol. We'll see. If nothing else, I can tell the pediatrician the steps we have already taken to accomplish our simply mission: weight gain :)
It's a mellow day at home today. I'm hoping to putter about, getting some things done at home.
It was our first visit to the Developmental Medicine Center/DS clinic. A was quick to meet us; she had paid Josiah and I a visit after his surgery. She finally had the chance to meet Carl. Josiah was weighed and measured. He weighed in at 9lb 4.15oz. At best, he's gained 3oz; At worst, he's gained 1oz since Friday. We met, first, with the nutritionist, then the feeding specialist. There were several good conclusions to our conversation. First, it is unlikely that this is medically based (ie, gastrointestinal issues, absorption issues, etc). Josiah seems well on all accounts. Second, it is not a feeding issue - Josiah is doing well breastfeeding. Third, there is nothing "wrong" with me.
The final assessment:
Josiah simply needs more calories than he is currently getting. As breast milk and formula both register at approximately 20 calories per ounce, Josiah likely needs more calories per oz.
Solution:
1. Nurse Josiah as we've been doing. Immediately after each feeding, offer him 2oz of fortified formula or breast milk (breast milk or formula with added formula mixed in).
2. Pump 2-3 times per day to increase my own supply, per KF's advice.
I love when problems and solutions are fairly simple. This seems to be the case here. I am so thankful.
This morning, Josiah had 1 interrupted feeding. Two hours later, he had his second (and full) feeding. He was immediately offered a 2oz bottle of fortified formula and he consumed the entire bottle. He was given a second bottle, and consumed an additional oz. I think we're off to a good start. I'll wait until noon, and start the next round.
Tomorrow, we return to the pediatrician for a weight check. I'm hoping we can pack on a few ounces today lol. We'll see. If nothing else, I can tell the pediatrician the steps we have already taken to accomplish our simply mission: weight gain :)
It's a mellow day at home today. I'm hoping to putter about, getting some things done at home.
Monday, March 5, 2012
Determined to Find Solutions
Josiah woke at 5:45am. He always nurses well first thing in the morning. Despite lingering frustration, I was determined to get things rolling....
K came out at 8:30 to work with James. He was so cute this morning & beyond excited to see her. They spent their time playing, talking, and laughing. Josiah enjoyed watching them, from his swing. K was able to see the boys back-to-back today, which was nice. At 9:45, it was Josiah's turn. He, too, had fun with K. He showed off his ability to hold toys, each time bringing them up the air (and looking at them). He rolled onto his side and back again. He kicked his tripod toy, triggering the music sensor; he's clearly demonstrating his understanding of cause and effect. We moved the tripod so it was over his chest. He enjoyed proving that he could trigger the same sensor, using his hands :) He responds with pride each time he demonstrates one of his tricks. He's an amazing little boy.
Jesse went to school and had a great day. We all went to pick him up; he likes when we do that. Afterwards, we did a few quick errands and returned home. During mid-late afternoon, I offered Josiah a new bottle that arrived today (I ordered it on Saturday). I was ecstatic about this bottle as I believed Josiah would really like it. Again, I was hopefully optimistic. Josiah would have no part of that thing! So, I continued to nurse Josiah on-demand, even when I felt I had nothing left. It can be exhausting. I still worry about the lack of weight gain. I know things will get better soon.
I heard back from the DS clinic today. Josiah has an appointment, tomorrow, to meet with both a nutritionist and feeding specialist. I hope they can offer a few helpful suggestions. This evening, I called KF. We spoke at length. I am determined to continue to breastfeed Josiah; KF is determined to support my efforts. She is also determined to help me solve this current feeding/lack-of-weight-gain issue. She offered some very helpful tips, which I will implement immediately. We'll see what comes of tomorrow's appointments.
The boys are going to my parent's house tomorrow so we can go into Children's with Josiah. It's always less complicated when the older boys are not in tow.
I firmly believe this will all work. I'm just looking forward to reaching that reality :)
K came out at 8:30 to work with James. He was so cute this morning & beyond excited to see her. They spent their time playing, talking, and laughing. Josiah enjoyed watching them, from his swing. K was able to see the boys back-to-back today, which was nice. At 9:45, it was Josiah's turn. He, too, had fun with K. He showed off his ability to hold toys, each time bringing them up the air (and looking at them). He rolled onto his side and back again. He kicked his tripod toy, triggering the music sensor; he's clearly demonstrating his understanding of cause and effect. We moved the tripod so it was over his chest. He enjoyed proving that he could trigger the same sensor, using his hands :) He responds with pride each time he demonstrates one of his tricks. He's an amazing little boy.
Jesse went to school and had a great day. We all went to pick him up; he likes when we do that. Afterwards, we did a few quick errands and returned home. During mid-late afternoon, I offered Josiah a new bottle that arrived today (I ordered it on Saturday). I was ecstatic about this bottle as I believed Josiah would really like it. Again, I was hopefully optimistic. Josiah would have no part of that thing! So, I continued to nurse Josiah on-demand, even when I felt I had nothing left. It can be exhausting. I still worry about the lack of weight gain. I know things will get better soon.
I heard back from the DS clinic today. Josiah has an appointment, tomorrow, to meet with both a nutritionist and feeding specialist. I hope they can offer a few helpful suggestions. This evening, I called KF. We spoke at length. I am determined to continue to breastfeed Josiah; KF is determined to support my efforts. She is also determined to help me solve this current feeding/lack-of-weight-gain issue. She offered some very helpful tips, which I will implement immediately. We'll see what comes of tomorrow's appointments.
The boys are going to my parent's house tomorrow so we can go into Children's with Josiah. It's always less complicated when the older boys are not in tow.
I firmly believe this will all work. I'm just looking forward to reaching that reality :)
Wednesday, January 4, 2012
Looking back at 2011
2011 was a year of great change, enormous obstacles, tragedy, and laughter.
In February, we discovered I was pregnant. During the next few months, we learned that we were carrying a baby boy and that he would have Down Syndrome. We learned of a hole in the baby's heart that would later heal on its own. In October, we gave birth to Josiah. We quickly became involved with several Down Syndrome Societies, Early Intervention, the Down Syndrome Clinic at our local Children's Hospital, and a new group of friends.
Carl, after having had a horrific history of back pain and ulcers, had his first cortisone shot in February. His back pain kept him from participating in most activities for the better part of the year. In Sept, we learned that the cortisone shot had begun a chain reaction....it reactivated an ulcer that had been surgically repaired years ago. The result.....he almost died, had emergency surgery, spent 3 weeks in the hospital, and returned just in time to witness the birth of Josiah.
Our son Jesse turned four. He started preschool in February, enjoyed summer activities with family, and returned to preschool in Sept.
Our son James turned two. He enjoyed summer activities with family, and began potty-training.
Both older boys said good-bye to an uncle and embraced a baby brother.
In Sept, my brother Scott died unexpectedly of a drug overdose. He was 50 yrs old. My brother Jeff and I both spoke at his funeral and we adjusted to not having an older brother any longer. We watched our parents bury their oldest child. We celebrated the good memories and mourned what could have been. We celebrated our first Thanksgiving and Christmas without Scott.
Some would say, it's been a bad year for our family. I don't see it that way.
* We were given the gift of Josiah and we couldn't be prouder to be his chosen parents.
* We've watched our older boys grow, learn, blossom, and embrace life. We couldn't be any prouder of them.
* Our family continuously demonstrates their undying love and support. We are extremely lucky. I thank God, everyday, for blessing us with our family.
* Carl was given a new lease on life. He was blessed with doctors that intervened, at just the right time. He was returned to us. For that, we are so blessed.
* My brother Scott finally found his way Home. His torment ended. He found peace.
* We have 3 beautiful boys who remind us, everyday, that life is a journey that must be embraced with love and adoration.
The focus can never be on the 'bad' moments but rather the knowledge gained from enduring them with grace, dignity, and an open heart.
Happy New Year!
In February, we discovered I was pregnant. During the next few months, we learned that we were carrying a baby boy and that he would have Down Syndrome. We learned of a hole in the baby's heart that would later heal on its own. In October, we gave birth to Josiah. We quickly became involved with several Down Syndrome Societies, Early Intervention, the Down Syndrome Clinic at our local Children's Hospital, and a new group of friends.
Carl, after having had a horrific history of back pain and ulcers, had his first cortisone shot in February. His back pain kept him from participating in most activities for the better part of the year. In Sept, we learned that the cortisone shot had begun a chain reaction....it reactivated an ulcer that had been surgically repaired years ago. The result.....he almost died, had emergency surgery, spent 3 weeks in the hospital, and returned just in time to witness the birth of Josiah.
Our son Jesse turned four. He started preschool in February, enjoyed summer activities with family, and returned to preschool in Sept.
Our son James turned two. He enjoyed summer activities with family, and began potty-training.
Both older boys said good-bye to an uncle and embraced a baby brother.
In Sept, my brother Scott died unexpectedly of a drug overdose. He was 50 yrs old. My brother Jeff and I both spoke at his funeral and we adjusted to not having an older brother any longer. We watched our parents bury their oldest child. We celebrated the good memories and mourned what could have been. We celebrated our first Thanksgiving and Christmas without Scott.
Some would say, it's been a bad year for our family. I don't see it that way.
* We were given the gift of Josiah and we couldn't be prouder to be his chosen parents.
* We've watched our older boys grow, learn, blossom, and embrace life. We couldn't be any prouder of them.
* Our family continuously demonstrates their undying love and support. We are extremely lucky. I thank God, everyday, for blessing us with our family.
* Carl was given a new lease on life. He was blessed with doctors that intervened, at just the right time. He was returned to us. For that, we are so blessed.
* My brother Scott finally found his way Home. His torment ended. He found peace.
* We have 3 beautiful boys who remind us, everyday, that life is a journey that must be embraced with love and adoration.
The focus can never be on the 'bad' moments but rather the knowledge gained from enduring them with grace, dignity, and an open heart.
Happy New Year!
Tuesday, December 13, 2011
2-months old
Has it really been 2 months since Josiah was born??? This is an amazing journey we are on. I'm loving every minute of it.
Josiah had his first EI visit and he did very well. He is a social little boy and likes the EI worker. At this point, they simply monitor his movements, etc. He's turning his head in both directions (favoring the right, slightly). He tolerates laying on both sides. He brings his hands up to his mouth. Even on his side, he is able to bring his hands to mid-line and then to his mouth. He is alert and enjoys looking around his environment. He recognizes voices and searches for those he knows. His eyes are big and bright :) No delays evident, as of yet. The EI professional has requested a PT and RN consult. This is not due to any concerns, per se. Rather, they want to assure that a whole team is in place in the event they are needed.
I enjoy facebook very much but am very selective with whom I'm friends with (I have to actually know you, for example lol). Carl & I were recently introduced to a local group of parents. They have a page on FB & we recently joined. What an amazing group of people. There are approximately 130 members. They are all local and they are all raising a child with DS. They have get-togethers once per month & special annual events. We look forward to attending our first get-together & getting to know our new friends.
With the Holidays rapidly approaching, I have not yet made an appt for Josiah's "new baby" visit to Boston Children's DS clinic. We'll likely schedule that for January. His first clinic appt is scheduled for June. At that time, he'll meet with their team of specialists. They will monitor him approx. every 8 months until the age of 18. What an amazing time & place we live in. I thank God everyday that Josiah has such wonderful supports. I know he will truly blossom into an incredible young man, just like his two brothers.
Josiah's older brothers are great. James just turned two & cherishes every moment he is afforded to kiss his baby brother. James will say, "Hi, baby!" We have to keep reminding James that Josiah is not like his Elmo doll but rather a real baby. James would love to fling him on the floor and play with him....hence the constant supervision :) Jesse will be turning 5 in a few weeks.....I don't know where those 5 years went. He's doing very well in preschool & adores his baby brother(s). Jesse knows that Josiah has DS but it matters not. Josiah is his brother - nothing more, nothing less.
Oh yeah, I almost forgot to mention the best thing. Yesterday, Josiah turned 2 months old & he smiled at me. I mean a real ear-to-ear smile. My heart melted! As my friend said, "he turned 2 months old but you got the best present." She's absolutely right!
God knew what he was doing when he sent us Jesse, James, and Josiah. They are wonderful children & we couldn't ask for more. If I had to go back and do it all over again.....I wouldn't change a thing <3
Josiah had his first EI visit and he did very well. He is a social little boy and likes the EI worker. At this point, they simply monitor his movements, etc. He's turning his head in both directions (favoring the right, slightly). He tolerates laying on both sides. He brings his hands up to his mouth. Even on his side, he is able to bring his hands to mid-line and then to his mouth. He is alert and enjoys looking around his environment. He recognizes voices and searches for those he knows. His eyes are big and bright :) No delays evident, as of yet. The EI professional has requested a PT and RN consult. This is not due to any concerns, per se. Rather, they want to assure that a whole team is in place in the event they are needed.
I enjoy facebook very much but am very selective with whom I'm friends with (I have to actually know you, for example lol). Carl & I were recently introduced to a local group of parents. They have a page on FB & we recently joined. What an amazing group of people. There are approximately 130 members. They are all local and they are all raising a child with DS. They have get-togethers once per month & special annual events. We look forward to attending our first get-together & getting to know our new friends.
With the Holidays rapidly approaching, I have not yet made an appt for Josiah's "new baby" visit to Boston Children's DS clinic. We'll likely schedule that for January. His first clinic appt is scheduled for June. At that time, he'll meet with their team of specialists. They will monitor him approx. every 8 months until the age of 18. What an amazing time & place we live in. I thank God everyday that Josiah has such wonderful supports. I know he will truly blossom into an incredible young man, just like his two brothers.
Josiah's older brothers are great. James just turned two & cherishes every moment he is afforded to kiss his baby brother. James will say, "Hi, baby!" We have to keep reminding James that Josiah is not like his Elmo doll but rather a real baby. James would love to fling him on the floor and play with him....hence the constant supervision :) Jesse will be turning 5 in a few weeks.....I don't know where those 5 years went. He's doing very well in preschool & adores his baby brother(s). Jesse knows that Josiah has DS but it matters not. Josiah is his brother - nothing more, nothing less.
Oh yeah, I almost forgot to mention the best thing. Yesterday, Josiah turned 2 months old & he smiled at me. I mean a real ear-to-ear smile. My heart melted! As my friend said, "he turned 2 months old but you got the best present." She's absolutely right!
God knew what he was doing when he sent us Jesse, James, and Josiah. They are wonderful children & we couldn't ask for more. If I had to go back and do it all over again.....I wouldn't change a thing <3
Tuesday, November 8, 2011
Getting services in place
We arrived home on Friday 10/14/11.
We had done our homework and wanted to waste no time. We had read the benefits of putting services into place quickly....we want to give our child every opportunity to reach his full potential.
Friday afternoon, I was on the phone with the insurance company (getting him set-up with medical insurance) & I called Early Intervention (whom I had spoken with prior to his birth).
Monday, was a repeat of the above phone calls...
By Wednesday (exactly one week after birth), we had insurance set-up & an intake scheduled with Early Intervention.
By Friday (9 days old), we were on the phone with the Down Syndrome Clinic - setting up his first clinic appointment.
November is a busy month....Josiah will begin receiving Early Intervention services. He'll have a specialized hearing test (as he failed his newborn hearing screening), we will schedule his "new baby visit" to the DS clinic, and he'll have weekly "weight checks" with the pedicatrician (as DS babies are slow weight gainers, as we have already learned).....
Meanwhile, he's just like every other baby. He loves to be held. He eats & sleeps well. He's a happy little boy.
We are so blessed to have him in our lives <3
We had done our homework and wanted to waste no time. We had read the benefits of putting services into place quickly....we want to give our child every opportunity to reach his full potential.
Friday afternoon, I was on the phone with the insurance company (getting him set-up with medical insurance) & I called Early Intervention (whom I had spoken with prior to his birth).
Monday, was a repeat of the above phone calls...
By Wednesday (exactly one week after birth), we had insurance set-up & an intake scheduled with Early Intervention.
By Friday (9 days old), we were on the phone with the Down Syndrome Clinic - setting up his first clinic appointment.
November is a busy month....Josiah will begin receiving Early Intervention services. He'll have a specialized hearing test (as he failed his newborn hearing screening), we will schedule his "new baby visit" to the DS clinic, and he'll have weekly "weight checks" with the pedicatrician (as DS babies are slow weight gainers, as we have already learned).....
Meanwhile, he's just like every other baby. He loves to be held. He eats & sleeps well. He's a happy little boy.
We are so blessed to have him in our lives <3
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