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 :)
Showing posts with label audiology. Show all posts
Showing posts with label audiology. Show all posts
Wednesday, October 2, 2013
Saturday, July 20, 2013
A Whirlwind Of A Week
This was a busy week.
Last Sunday, Josiah took his first ride on a schooner boat. He was joined by numerous family members. It was a beautiful day. However, between the sun hat and life jacket, Josiah was not impressed. It was two nice hours in the fresh air regardless. It was a good experience for him.
On Monday, we brought Josiah to his playgroup. This was one of the last groups before closing for the summer. As usual, Josiah had a great time. He stood nicely at the lego table. He even crawled through a tunnel a couple of times (something he's struggled with previously).
Monday afternoon, his EI child care worker came. He loves K. He had his usual good session. Monday evening, the boys had their hair cut. They all look a little older (and cooler for summer).
Here's Josiah playing peek-a-boo with his new haircut :)
Wednesday, he had his usual PT session with D. He worked hard but made his discontent known. He's made such strides recently but this week was full of complaints lol. None-the-less, the continues to do well in weight bearing. He continues to improve his skills in standing. He'll be seen by orthopedics next week; we will find out whether or not a brace will be helpful.
As soon as D left, Josiah was changed and we were out the door. Off to the audiology clinic. We arrived a few minutes early and checked in. Considering he was sound asleep in the van, his mood remained stellar. We were called in; I provided them with updates (they hadn't seen him since the tender age of 6 weeks). Josiah sat in a high chair for the duration of the evaluation. The results were basically good:
Josiah can hear out of both ears.
Hearing in the left is better than the right.
The difference is likely caused by fluid in the ear (a typical problem for him).
Eliminating the fluid will likely cause symmetrical hearing (same in both ears).
Eliminating fluid will help with speech.
Josiah's nerves respond very well to sound, further suggesting fluid in the ear.
ENT is recommended for possible tube placement.
Developmentally, Josiah responded as they would expect any 21 month old to respond :)
It's all good news. The tubes don't frighten me. Our frame of reference is open heart surgery. Therefore, I expect this to be a walk in the park, as they say. By the close of day on Wednesday, we had an appointment scheduled with an ENT. That will happen in September at Children's satellite location.
Friday morning, we were up and out early with the three boys. It was time for the dentist. For the big boys, a routine six month check up. For Josiah, a first time visit. They all did well. Josiah has all of the correct teeth for a 21 month old child. He wasn't thrilled and tried to bite a few times; he shed a few tears but did very well, overall.
Our plans for today were derailed. We were going to an annual carnival, at a children's center. However, with the heat index at 100+, we decided to have a stay-at-home day. So, that's that. That has been our week.
Tomorrow, we are getting together with family. Monday, we go to Children's for Josiah's orthopedic appointment. I'm anxious (not in a bad way) to hear their recommendations.
Last Sunday, Josiah took his first ride on a schooner boat. He was joined by numerous family members. It was a beautiful day. However, between the sun hat and life jacket, Josiah was not impressed. It was two nice hours in the fresh air regardless. It was a good experience for him.
 | |
| "Is this hat and jacket really necessary?" |
On Monday, we brought Josiah to his playgroup. This was one of the last groups before closing for the summer. As usual, Josiah had a great time. He stood nicely at the lego table. He even crawled through a tunnel a couple of times (something he's struggled with previously).
 | ||||
| Notice how his left ankle turns in? That's why he needs to be seen by orthopedics. |
Monday afternoon, his EI child care worker came. He loves K. He had his usual good session. Monday evening, the boys had their hair cut. They all look a little older (and cooler for summer).
Here's Josiah playing peek-a-boo with his new haircut :)
 |
| "Peek a boo!" |
Wednesday, he had his usual PT session with D. He worked hard but made his discontent known. He's made such strides recently but this week was full of complaints lol. None-the-less, the continues to do well in weight bearing. He continues to improve his skills in standing. He'll be seen by orthopedics next week; we will find out whether or not a brace will be helpful.
As soon as D left, Josiah was changed and we were out the door. Off to the audiology clinic. We arrived a few minutes early and checked in. Considering he was sound asleep in the van, his mood remained stellar. We were called in; I provided them with updates (they hadn't seen him since the tender age of 6 weeks). Josiah sat in a high chair for the duration of the evaluation. The results were basically good:
Josiah can hear out of both ears.
Hearing in the left is better than the right.
The difference is likely caused by fluid in the ear (a typical problem for him).
Eliminating the fluid will likely cause symmetrical hearing (same in both ears).
Eliminating fluid will help with speech.
Josiah's nerves respond very well to sound, further suggesting fluid in the ear.
ENT is recommended for possible tube placement.
Developmentally, Josiah responded as they would expect any 21 month old to respond :)
It's all good news. The tubes don't frighten me. Our frame of reference is open heart surgery. Therefore, I expect this to be a walk in the park, as they say. By the close of day on Wednesday, we had an appointment scheduled with an ENT. That will happen in September at Children's satellite location.
Friday morning, we were up and out early with the three boys. It was time for the dentist. For the big boys, a routine six month check up. For Josiah, a first time visit. They all did well. Josiah has all of the correct teeth for a 21 month old child. He wasn't thrilled and tried to bite a few times; he shed a few tears but did very well, overall.
Our plans for today were derailed. We were going to an annual carnival, at a children's center. However, with the heat index at 100+, we decided to have a stay-at-home day. So, that's that. That has been our week.
Tomorrow, we are getting together with family. Monday, we go to Children's for Josiah's orthopedic appointment. I'm anxious (not in a bad way) to hear their recommendations.
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 :)
Monday, July 8, 2013
Vision and Ortho
A couple of weeks ago, Josiah had his first appointment with Children's Ophthalmology Department.
We arrived early to the satellite office and filled out 'new' patient information.
Josiah was first seen by an optometrist, who was young and sweet. She held up long pieces of cardboard in front of Josiah. On each one, a black and white picture was strategically placed. She watched to see how quickly Josiah's eyes would focus on the pictures. He performed brilliantly!!!
Next, she dilated his eyes....he was not impressed. However, thanks to a few toys, Josiah became distracted quickly.
After the 20 minute wait for his eyes to dilate properly, he was seen by ophthalmologist. She looked at his eyes, and performed various tests.
In the end, the results were good. Josiah's eyes are healthy!!! He is showing early signs of nearsightedness - this is not uncommon. Both his parents are also nearsighted :) Despite the early signs, the doctor doesn't feel that intervention is needed at this time.
We'll follow up with her in six months.
In the meanwhile, Josiah has continued his weekly physical therapy sessions. He is making huge strides. He has been practicing his weight bearing skills. He is able to stand, with assistance. He is not yet taking steps, but he is working hard.
A few weeks ago, the PT voiced concern over his low muscle tone (specifically in the ankle area). Josiah's ankles turn in when he stands (especially the left foot). She believes that a temporary ankle brace may be helpful. It would serve three purposes: It would help stabilize the ankle; It will boost his confidence; and, it may encourage his to start taking steps.
So, after a few quick calls and emails, Josiah's first visit with orthopedics is scheduled. In a few weeks, we shall see what the recommendations are.
Now, I just need to schedule his standard follow up with audiology & make his first appointment with dental.
Ahhhh! Then, I think we'll be all set until his flu shot in September.
I'll keep you posted :)
We arrived early to the satellite office and filled out 'new' patient information.
Josiah was first seen by an optometrist, who was young and sweet. She held up long pieces of cardboard in front of Josiah. On each one, a black and white picture was strategically placed. She watched to see how quickly Josiah's eyes would focus on the pictures. He performed brilliantly!!!
Next, she dilated his eyes....he was not impressed. However, thanks to a few toys, Josiah became distracted quickly.
After the 20 minute wait for his eyes to dilate properly, he was seen by ophthalmologist. She looked at his eyes, and performed various tests.
In the end, the results were good. Josiah's eyes are healthy!!! He is showing early signs of nearsightedness - this is not uncommon. Both his parents are also nearsighted :) Despite the early signs, the doctor doesn't feel that intervention is needed at this time.
We'll follow up with her in six months.
In the meanwhile, Josiah has continued his weekly physical therapy sessions. He is making huge strides. He has been practicing his weight bearing skills. He is able to stand, with assistance. He is not yet taking steps, but he is working hard.
A few weeks ago, the PT voiced concern over his low muscle tone (specifically in the ankle area). Josiah's ankles turn in when he stands (especially the left foot). She believes that a temporary ankle brace may be helpful. It would serve three purposes: It would help stabilize the ankle; It will boost his confidence; and, it may encourage his to start taking steps.
So, after a few quick calls and emails, Josiah's first visit with orthopedics is scheduled. In a few weeks, we shall see what the recommendations are.
Now, I just need to schedule his standard follow up with audiology & make his first appointment with dental.
Ahhhh! Then, I think we'll be all set until his flu shot in September.
I'll keep you posted :)
Monday, May 6, 2013
Another Busy Week
It's always hard to believe that it's Monday again. It seems a struggle to get to Friday then, without warning, it's Monday. Just like last week, we have another busy week planned.
This morning, I was up early making orange playdough. It's a funny thing to be doing at 6:15 am, but I pooped out last night before making the 6th batch of playdough for my son's (the 3 yr old) school.
Once I'm ready for the day, we will wake up sleeping sunshine (otherwise known as Josiah). We have early intervention (EI) playgroup later this morning. After the one hour group, we're off to do a couple of quick errands. Then, Josiah has his favorite EI worker, K, coming to see him.
Tomorrow, Josiah has speech early in the a.m. After he's nice and tired from speech, we'll load him into the van and take him to the MD's office for 18 month well visit. Of course, they'll check the status of his ears at the same time. Today is day 8 of the medicine, so hopefully his ears are better.
Wednesday morning, we'll be at the Audiology clinic for a hearing screening. The last few at the Children's Hospital have been inconclusive, so we will return to the 'other' place - where we brought him at 1 month. They had great luck with him :) Sadly, we had to cancel PT this week, but she'll see him next week.
Thursday, our playgroup has been moved to the afternoon - works out well for us this week as C has an a.m. appt.
As of 5pm on Thursday, I'm not sure of our schedule....lots of possibilities....having made a final decision yet. I do know that Friday is appointment-free, at least for Josiah. Hmm.....what to do
Have a great week everyone :)
This morning, I was up early making orange playdough. It's a funny thing to be doing at 6:15 am, but I pooped out last night before making the 6th batch of playdough for my son's (the 3 yr old) school.
Once I'm ready for the day, we will wake up sleeping sunshine (otherwise known as Josiah). We have early intervention (EI) playgroup later this morning. After the one hour group, we're off to do a couple of quick errands. Then, Josiah has his favorite EI worker, K, coming to see him.
Tomorrow, Josiah has speech early in the a.m. After he's nice and tired from speech, we'll load him into the van and take him to the MD's office for 18 month well visit. Of course, they'll check the status of his ears at the same time. Today is day 8 of the medicine, so hopefully his ears are better.
Wednesday morning, we'll be at the Audiology clinic for a hearing screening. The last few at the Children's Hospital have been inconclusive, so we will return to the 'other' place - where we brought him at 1 month. They had great luck with him :) Sadly, we had to cancel PT this week, but she'll see him next week.
Thursday, our playgroup has been moved to the afternoon - works out well for us this week as C has an a.m. appt.
As of 5pm on Thursday, I'm not sure of our schedule....lots of possibilities....having made a final decision yet. I do know that Friday is appointment-free, at least for Josiah. Hmm.....what to do
Have a great week everyone :)
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.
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."
Saturday, June 9, 2012
Follow-up at the Pediatrician
Wow! OMG! Holy Canoli! That's all I can say :)
Friday morning, we headed to the pediatrician (Dr. W) to follow-up regarding Josiah's ears (he was found to have fluid in his ears on Thursday). The two year old was also due for an appointment, so we killed two birds with one stone.
Josiah was weighed upon arrival (the norm, at this point). He weighed in at 13 lbs 2 oz. The RN was pleased. I remained quietly anxious, as weight has been a struggle forever! When the Dr. W. came in, he asked about Josiah's weight. I cautiously answered. The pediatrician was HAPPY! I mean genuinely happy! He kept repeating, "I just can't get over Josiah's weight." "He looks amazing!" "He's doing great!" Dr. W. checked Josiah's ears - the fluid is minimal. There's nothing you can do for fluid in the ears, at this stage. So, we will check in with Dr. W. just before the next audiology appointment in Boston.
I joked with Dr. W. about how Josiah falls in the 10% percentile for weight and my 2 yr old falls in the 9% percentile for his weight. Dr. W. replied (regarding the 2 yr old), "He did. Now he falls in the 5th." I laughed. It goes to show that maybe our kids are just little lol.
To say I was relieved would be an understatement. I was excited, elated, pleased, satisfied...all things good :) We left with no mention of need for a next appointment (except the ears follow up).
I am eternally grateful!
Friday morning, we headed to the pediatrician (Dr. W) to follow-up regarding Josiah's ears (he was found to have fluid in his ears on Thursday). The two year old was also due for an appointment, so we killed two birds with one stone.
Josiah was weighed upon arrival (the norm, at this point). He weighed in at 13 lbs 2 oz. The RN was pleased. I remained quietly anxious, as weight has been a struggle forever! When the Dr. W. came in, he asked about Josiah's weight. I cautiously answered. The pediatrician was HAPPY! I mean genuinely happy! He kept repeating, "I just can't get over Josiah's weight." "He looks amazing!" "He's doing great!" Dr. W. checked Josiah's ears - the fluid is minimal. There's nothing you can do for fluid in the ears, at this stage. So, we will check in with Dr. W. just before the next audiology appointment in Boston.
I joked with Dr. W. about how Josiah falls in the 10% percentile for weight and my 2 yr old falls in the 9% percentile for his weight. Dr. W. replied (regarding the 2 yr old), "He did. Now he falls in the 5th." I laughed. It goes to show that maybe our kids are just little lol.
To say I was relieved would be an understatement. I was excited, elated, pleased, satisfied...all things good :) We left with no mention of need for a next appointment (except the ears follow up).
I am eternally grateful!
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.
Tuesday, November 15, 2011
The hearing hurdle
So....Josiah failed his newborn hearing screening (in both ears). They scheduled a follow-up test for today.
We left early this a.m. for Josiah's "Auditory Brainstem Response Exam." Luckily, we were able to go to a local audiology clinic & save the trip to Boston. The directions for the test were funny:
Don't let your child get a good night sleep.
Wake your child early in the a.m.
Don't feed your child within two hours of the test.
Don't allow your child to fall asleep in the car on the way to the test.
"We want your child to arrive awake, hungry, and tired."
(all the things a parent of a newborn hopes to be told LOL).
Well, we followed the instructions & arrived right on time. They prepared him for the test. I was allowed to feed him & he promptly fell asleep. We were told to come back in 90 minutes, which we did :)
When we arrived back, we noticed the audiologist pacing the hallway with Josiah. I thought, "Oh boy, this didn't go well." Much to my delight....Josiah had been a perfect angel. He slept throughout the duration of the test (a requirement of the test). They were able to complete the comprehensive hearing test. I nursed him while they explained the results.
Bottom line: Josiah passed with flying colors.
When tested at the quietest level (20db), it took a couple of milliseconds longer for the sound to reach it's destination. At 25db, the brainstem response was "discernible" (reached it's destination at a normal rate). The slower response to the 20db could be explained by the fact that Josiah's ear canals, etc are TINY (very common with DS kids). He has no fluid in his ears (just a little congestion in one ear). He has no infections. His hearing is not a concern. This is GREAT news :)
Although he will be more at-risk for ear infections (another common trait in DS), his hearing is fine.
It's a great day.
We left early this a.m. for Josiah's "Auditory Brainstem Response Exam." Luckily, we were able to go to a local audiology clinic & save the trip to Boston. The directions for the test were funny:
Don't let your child get a good night sleep.
Wake your child early in the a.m.
Don't feed your child within two hours of the test.
Don't allow your child to fall asleep in the car on the way to the test.
"We want your child to arrive awake, hungry, and tired."
(all the things a parent of a newborn hopes to be told LOL).
Well, we followed the instructions & arrived right on time. They prepared him for the test. I was allowed to feed him & he promptly fell asleep. We were told to come back in 90 minutes, which we did :)
When we arrived back, we noticed the audiologist pacing the hallway with Josiah. I thought, "Oh boy, this didn't go well." Much to my delight....Josiah had been a perfect angel. He slept throughout the duration of the test (a requirement of the test). They were able to complete the comprehensive hearing test. I nursed him while they explained the results.
Bottom line: Josiah passed with flying colors.
When tested at the quietest level (20db), it took a couple of milliseconds longer for the sound to reach it's destination. At 25db, the brainstem response was "discernible" (reached it's destination at a normal rate). The slower response to the 20db could be explained by the fact that Josiah's ear canals, etc are TINY (very common with DS kids). He has no fluid in his ears (just a little congestion in one ear). He has no infections. His hearing is not a concern. This is GREAT news :)
Although he will be more at-risk for ear infections (another common trait in DS), his hearing is fine.
It's a great day.
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