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 nutrition. Show all posts
Showing posts with label nutrition. Show all posts
Friday, September 20, 2013
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.
Friday, March 2, 2012
Exasperated!!!
We took Josiah to the cardiologist today for his first office follow-up appointment, since his surgery. His EKG was great! Then, they weighed him. He weighed in at 9lbs 1.3oz. At best, given that each office has it's own scale, he neither gained nor lost weight. At worst, he lost 2oz since last Friday (at the pediatrician's office). I cannot begin to describe the feeling of complete exasperation, frustration, and despair.
Perhaps it seems like a small thing; perhaps it is. All I know is this: Josiah weighed 7lbs on 10/12/2011. Today, 3/2/12, he weighed 9lbs 1oz. He will be five months old, in ten days. At Jesse's four-month check up, he weighed 15lbs. James, at the same check up, weighed 13lbs. I know the DS plays a role in the slow weight gain, but this isn't right.
We (the professionals and family alike) believed that the heart problems were contributing to his slow weight gain. That excuse can no longer be used. Today's appointment confirmed that Josiah's heart is perfect (a wonderful piece of news that I cannot negate). Is it the Down Syndrome? Is it a feeding issue? Is he not getting enough calories? Does he simply need more calories than an average child? Should we start feeding him cereal? UGH! The questions race through my tired mind.
The surgeon was very pleased with the outcome of Josiah's surgery. Josiah's heart "sounds perfect." His color is good. "He looks like a different kid." "He looks more mature in the way he's moving around." However, "I expected him to come in here having gained a lot of weight so this is disappointing." (Yeah, tell me about it!)
Up until now, Josiah has been exclusively breastfed. He doesn't like the bottle; he won't drink from a bottle. Since surgery, he's been eating every 2-3 hours. It seems impossible to me that the child has gained no weight but numbers do not lie. I don't know what to do....that's the feeling. I hate that feeling. I'm tired and feel I has so little left to give....
We made our way out of the cardiologists office. I immediately walked down the hall to the pediatrician's office. I talked to our favorite nurse M. I voiced my frustration. I asked if we should start Josiah on cereal. I assured her we were doing everything we could to properly nourish our son. She already knows that we are. She said she'd call me later.
We did a few errands, picked up Jesse from school, and made our way home. I was exhausted. I left a message for our EI worker K. I know I'll hear from her as soon as she's available. This afternoon I fed Josiah...off and on....like usual. I went to the store for groceries and bought a different type of bottle - maybe Josiah will drink from this one. It's worth a try.
I talked to M from the pedi's office. The MD said we can start Josiah on cereal. I needed more than that. I didn't know what I needed, but that wasn't enough. I guess I wanted an instant fix.... I was so emotionally spent, my mind couldn't form concrete thoughts by which to gain more information. I ended the call for lack of knowing what else to say. Carl was very supportive of my frustration level. He called the MD's office back again and spoke with our pediatrician. The pedi is sympathetic to the situation and understands the frustration level. He suggests the OT (as the cardiologist did), a nutritionist (specifically with the DS clinic), formula if possible, cereal, the new bottle, and high-calorie formula if we request such. We'll see the pediatrician next Thursday for another weight check.
I called the lactation specialist KF and heard back from her promptly. We chatted for some time. It's nice to have someone who knows the frustration of breastfeeding a baby who doesn't gain weight. She offered some great suggestions. One by one, I'll try them all.
I talked to K for quite some time after. She is another fantastic support. K will put in a referral for OT early next week. It will be, specifically, for feeding. I've entrusted that task to her. We'll see K on Monday and will discuss the details further.
Tomorrow, I'll email A from the DS clinic. I'll explain what's going on with Josiah. I'll ask her what I need to do to initiate a consult with one of their nutritionists. I'll probably hear back from her on Monday.
It's the weekend now....two days, at home, with my wonderful family. I'm going to try to relax a little. I'll attempt some of the new suggestions given to me. Hopefully something will work. I'm going to try to not let it become all-consuming (although it already feels that way sometimes).
In the end, everything will work out. Even the cardiologist said "this is just another little hurdle we have to climb over." Everything will work out.
Climbing up the down staircase isn't always easy....but it's worth every single step <3
Perhaps it seems like a small thing; perhaps it is. All I know is this: Josiah weighed 7lbs on 10/12/2011. Today, 3/2/12, he weighed 9lbs 1oz. He will be five months old, in ten days. At Jesse's four-month check up, he weighed 15lbs. James, at the same check up, weighed 13lbs. I know the DS plays a role in the slow weight gain, but this isn't right.
We (the professionals and family alike) believed that the heart problems were contributing to his slow weight gain. That excuse can no longer be used. Today's appointment confirmed that Josiah's heart is perfect (a wonderful piece of news that I cannot negate). Is it the Down Syndrome? Is it a feeding issue? Is he not getting enough calories? Does he simply need more calories than an average child? Should we start feeding him cereal? UGH! The questions race through my tired mind.
The surgeon was very pleased with the outcome of Josiah's surgery. Josiah's heart "sounds perfect." His color is good. "He looks like a different kid." "He looks more mature in the way he's moving around." However, "I expected him to come in here having gained a lot of weight so this is disappointing." (Yeah, tell me about it!)
Up until now, Josiah has been exclusively breastfed. He doesn't like the bottle; he won't drink from a bottle. Since surgery, he's been eating every 2-3 hours. It seems impossible to me that the child has gained no weight but numbers do not lie. I don't know what to do....that's the feeling. I hate that feeling. I'm tired and feel I has so little left to give....
We made our way out of the cardiologists office. I immediately walked down the hall to the pediatrician's office. I talked to our favorite nurse M. I voiced my frustration. I asked if we should start Josiah on cereal. I assured her we were doing everything we could to properly nourish our son. She already knows that we are. She said she'd call me later.
We did a few errands, picked up Jesse from school, and made our way home. I was exhausted. I left a message for our EI worker K. I know I'll hear from her as soon as she's available. This afternoon I fed Josiah...off and on....like usual. I went to the store for groceries and bought a different type of bottle - maybe Josiah will drink from this one. It's worth a try.
I talked to M from the pedi's office. The MD said we can start Josiah on cereal. I needed more than that. I didn't know what I needed, but that wasn't enough. I guess I wanted an instant fix.... I was so emotionally spent, my mind couldn't form concrete thoughts by which to gain more information. I ended the call for lack of knowing what else to say. Carl was very supportive of my frustration level. He called the MD's office back again and spoke with our pediatrician. The pedi is sympathetic to the situation and understands the frustration level. He suggests the OT (as the cardiologist did), a nutritionist (specifically with the DS clinic), formula if possible, cereal, the new bottle, and high-calorie formula if we request such. We'll see the pediatrician next Thursday for another weight check.
I called the lactation specialist KF and heard back from her promptly. We chatted for some time. It's nice to have someone who knows the frustration of breastfeeding a baby who doesn't gain weight. She offered some great suggestions. One by one, I'll try them all.
I talked to K for quite some time after. She is another fantastic support. K will put in a referral for OT early next week. It will be, specifically, for feeding. I've entrusted that task to her. We'll see K on Monday and will discuss the details further.
Tomorrow, I'll email A from the DS clinic. I'll explain what's going on with Josiah. I'll ask her what I need to do to initiate a consult with one of their nutritionists. I'll probably hear back from her on Monday.
It's the weekend now....two days, at home, with my wonderful family. I'm going to try to relax a little. I'll attempt some of the new suggestions given to me. Hopefully something will work. I'm going to try to not let it become all-consuming (although it already feels that way sometimes).
In the end, everything will work out. Even the cardiologist said "this is just another little hurdle we have to climb over." Everything will work out.
Climbing up the down staircase isn't always easy....but it's worth every single step <3
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