We went to see the geneticist today. He is a very sweet, scholarly, bearded grandpa-like man that asks a lot of questions. The very good news is that he didn't immediately conclude that there are any links between all of the issues we've seen with Torsten. Which is great because the immediate links that he could recognize would not be good news for us. We were hoping that these issues were purely coincidental, unrelated to each other and not a sign of more surprises to come. So far it looks like we're getting our wish.
Surprisingly though, he wants to do more research on Torsten's baldness. He believes there is a possibility that it's more than just hereditary baby baldness. He also believes that quite a few of the issues or oddities that we've experienced are likely related to the tethered cord and that they could begin to solve themselves after his surgery next month. We hope that he's right and are already looking forward to having the surgery over so we can move forward.
After discussing everything about Torsten's life so far, he told us that he'll do some research and will write up all of his findings and get them to us and to the pediatrician asap. We'll look forward to reading his report, but don't believe there will be anything shocking or terribly negative in it.
In other news, we have a very fussy (screaming) baby on our hands at the moment. I randomly checked yesterday to see if it felt like he would be getting any teeth soon and one had just started poking through. Poor kiddo. Our happy baby has been (at least part of the time) hijacked by a crying, teething grump. But we're stocked up on infant Tylenol, Ibuprofen, Baby Orajel, frozen washcloths, carrots and waffles and plenty of wine (for our sanity), so we'll hope this tooth makes its full appearance sooner than later!
Monday, February 11, 2013
Friday, February 1, 2013
All patched up
Torsten slept for 2 days after his eye surgery. Then he stayed awake for 2 days and 2 nights. Since he was barely sleeping at all, we talked to a nurse at his pediatrician's office, the surgeon and the anesthesiologist. They all said to get checked out by the pediatrician since he'd had such a difficult time waking up from anesthesia and also just to make sure that nothing was seriously wrong. After seeing the pediatrician last night, we were told that Torsten is healthy, but is still hanging on to some of the effects of the anesthesia. She said that things should start to get better and to be patient. She was right - last night was a little better and we did get a little sleep.We're hoping that we'll get a little more tonight.
We also had a follow-up appointment with the surgeon this morning. He was thrilled with Torsten's progress and thinks that his eyes look great. We discussed the fact that his left eye is not tracking exactly with the right and were told that Torsten will need to wear a patch over his good eye for an hour each day for the next six weeks. We thought that Torsten would hate the patch, but he didn't seem to mind and handled it great. We'll see how long that lasts!
We have an appointment with the geneticist on Feb. 11th, then testing with the urologist later in the month. Other than that, we'll just be enjoying every day with our little guy until our next round of appointments and his surgery in March. Again, thank you all for the sweet messages and for your care and concern.Torsten is doing great and appreciates all of you!
We also had a follow-up appointment with the surgeon this morning. He was thrilled with Torsten's progress and thinks that his eyes look great. We discussed the fact that his left eye is not tracking exactly with the right and were told that Torsten will need to wear a patch over his good eye for an hour each day for the next six weeks. We thought that Torsten would hate the patch, but he didn't seem to mind and handled it great. We'll see how long that lasts!
We have an appointment with the geneticist on Feb. 11th, then testing with the urologist later in the month. Other than that, we'll just be enjoying every day with our little guy until our next round of appointments and his surgery in March. Again, thank you all for the sweet messages and for your care and concern.Torsten is doing great and appreciates all of you!
Our adorable little pirate
Wednesday, January 30, 2013
Happy Days
After 2 days of constant, but restless sleep and waking up every 1.5 hours all night, our happy baby is back! His eyes are looking better, are much less red and are mostly looking straight. We have a follow-up appointment with the surgeon on Friday morning, so we'll ask him about the left eye, which seems to be slightly off. Other than that, everything is great! We had a great day today and are hoping our little guy stays asleep for a few hours tonight. Life is good!
Torsten - two days post-surgery
Tuesday, January 29, 2013
A sleepy and fussy kind of day
The narcotics and anesthesia finally wore off around 2am last night. And when they did, Torsten was ready to start the day. It's been a long night and morning of eating, playing and occasionally napping.
It seems like he's in some pain, both in his eyes and in his arm where the IV was. We've been giving him Tylenol, which does seem to help, but he's been very fussy and is still a little groggy.
On the bright side, his eyes are looking a little better today and he's definitely looking straight. They seem to be tracking together well and he's looking around as if he's seeing everything for the first time. We're so happy that the surgery seems to have been a success and are now questioning if the constant double-vision could be at least partially to blame for some developmental delays that we've noticed. He's already grabbing objects with more intent than he was just two days ago. We're taking it all in and are looking forward to seeing more improvements!
Thanks for all of the sweet messages we've received over the last 24 hours. We'll keep posting about his progress over the next week or so and will try to reply to everyone individually asap. Lots of love to you all!
It seems like he's in some pain, both in his eyes and in his arm where the IV was. We've been giving him Tylenol, which does seem to help, but he's been very fussy and is still a little groggy.
On the bright side, his eyes are looking a little better today and he's definitely looking straight. They seem to be tracking together well and he's looking around as if he's seeing everything for the first time. We're so happy that the surgery seems to have been a success and are now questioning if the constant double-vision could be at least partially to blame for some developmental delays that we've noticed. He's already grabbing objects with more intent than he was just two days ago. We're taking it all in and are looking forward to seeing more improvements!
Thanks for all of the sweet messages we've received over the last 24 hours. We'll keep posting about his progress over the next week or so and will try to reply to everyone individually asap. Lots of love to you all!
Monday, January 28, 2013
He's awake and happy!
Torsten finally woke up after ten hours of drug-induced sleep! His eyes are looking straight, he's in a great mood and his vision seems to have immediately improved! He doesn't seem to be in pain, but did have some narcotics during the surgery and has had Tylenol since. Regardless, he's super happy and just smiled his way through a long FaceTime call with Grandma Barb. Life is good!
He's not able to open his eyes very wide, but this pic at least shows that he's looking straight!
Looking straight ahead
Surgery #1 is complete. According to the surgeon, Torsten is looking and tracking straight as of now. That can change, but as of today, things are looking good.
The doctors said that the surgery went really well. Shortly after he went to recovery, they called us back so we could be there when he woke up. Apparently he set some kind of record for time it takes for a baby to wake up. Torsten took 2.5 hours to respond to anything. Even after that, I can't really say that he "woke up". He nursed for a few minutes in his sleep, cracked open his eyes briefly a few times and kicked his legs a little, but even now (over 4 hours later) he's completely out. I've never wanted to hear him cry so badly.
We haven't seen much of his eyes, but from the few glimpses we've had, they do seem to be straight. They're also extremely red and he's had some bloody tears. Hopefully he won't be in much pain, but the doctor told us to proactively give him Tylenol and to call if we needed anything stronger.
Since I haven't slept longer than 2 hours consecutively in weeks, I'm going to lay down next to my sleeping munchkin and try to get a little rest. We have nothing but snuggling on the agenda for the rest of the day.
We haven't really seen Torsten awake since the surgery, so if there is anything else to report once he's up, I'll post again later. We've received texts, calls and emails from so many of you and wanted to thank you all for thinking of us. Your love and prayers have been absolutely overwhelming and amazing. We're so fortunate to have such an amazing support network! Thank you, thank you, thank you!
The doctors said that the surgery went really well. Shortly after he went to recovery, they called us back so we could be there when he woke up. Apparently he set some kind of record for time it takes for a baby to wake up. Torsten took 2.5 hours to respond to anything. Even after that, I can't really say that he "woke up". He nursed for a few minutes in his sleep, cracked open his eyes briefly a few times and kicked his legs a little, but even now (over 4 hours later) he's completely out. I've never wanted to hear him cry so badly.
We haven't seen much of his eyes, but from the few glimpses we've had, they do seem to be straight. They're also extremely red and he's had some bloody tears. Hopefully he won't be in much pain, but the doctor told us to proactively give him Tylenol and to call if we needed anything stronger.
Since I haven't slept longer than 2 hours consecutively in weeks, I'm going to lay down next to my sleeping munchkin and try to get a little rest. We have nothing but snuggling on the agenda for the rest of the day.
We haven't really seen Torsten awake since the surgery, so if there is anything else to report once he's up, I'll post again later. We've received texts, calls and emails from so many of you and wanted to thank you all for thinking of us. Your love and prayers have been absolutely overwhelming and amazing. We're so fortunate to have such an amazing support network! Thank you, thank you, thank you!
Friday, January 25, 2013
Big boned
Torsten has gained some weight. So much that Ryan jokingly says that he's big boned and looks like a marshmallow. To us he looks huge, but next to other babies around the same age, he's still just a tiny little guy.
We had two appointments today - one follow-up with the pediatrician and a pre-op appointment with the pediatric ophthalmologist. The pediatrician is thrilled with the weight we've put on our little guy. In the past 17 days, Torsten has grown 1/2 inch (up from 9th to the 10-12th percentile), gained 2 pounds (up from below the charts to ~4th percentile) and his head has grown by 1/2 inch (up from 25th to the 50th percentile). Even though we're still low on the charts, we agreed that Torsten will probably stay near the bottom for life due to thin genetics, and that this is fine as long as he's growing, which he is now. Since I've been nursing him all night, every night (every 1.5-2 hours), she said that we could start cutting back on those feedings and finally try to get some sleep. However, we do need to keep the effort going and feed him the same as we have been during the day. So by day, Torsten will continue to nurse constantly and eat plenty of carb-filled veggies, fruits and yogurt. He definitely has a hearty appetite and shocks people when they see him eat for the first time. Even though he'll only eat the healthiest foods I've offered him, he nearly needs a shovel to get it in his mouth fast enough. Mealtime has become seriously amusing in this house!
Our good friend Allison (MD in Atlanta) suggested that we discuss with our pediatrician the possibility of seeing a geneticist to check if all of the issues we've had so far could be related. When I mentioned this today, Torsten's doctor agreed that it would be a good idea. So even though we would like to cut back on doctors and appointments, we do want to make sure that we're not missing anything.We'll see this new doctor on February 11th and will hopefully be able to get some questions answered and move forward.
The pre-op appointment with the ophthalmologist went fine as well. He tried to get another round of measurements of Torsten's eyes, which seems to be a struggle. He'll measure again on Monday morning, but other than that, we're set to go. We have to be at the hospital at 5:30am on Monday and the surgery will be at 7:30am. He again told us that there should be very little recovery and that once he's "under" and in the operating room, it should go quickly. He also verified again that the worse of the two eyes is shutting down. Since we weren't clear on what that meant, he explained that when there is double-vision, one eye will begin to be shut down by the brain and that if not corrected, it will eventually cease to function. Glad we're getting this taken care of sooner than later!
Thank you all again for your calls, texts, emails, thoughts, love and prayers. We can't even begin to tell you all how great it is to have such a loving, huge and widespread support network. We love you all and will let you know how Monday goes once it's over.
Who are you calling skinny?! Torsten, Jan. 12, 2013, 13.5 lbs.
No pants day. Torsten, Jan. 24, 2013, 14.7 lbs.
We had two appointments today - one follow-up with the pediatrician and a pre-op appointment with the pediatric ophthalmologist. The pediatrician is thrilled with the weight we've put on our little guy. In the past 17 days, Torsten has grown 1/2 inch (up from 9th to the 10-12th percentile), gained 2 pounds (up from below the charts to ~4th percentile) and his head has grown by 1/2 inch (up from 25th to the 50th percentile). Even though we're still low on the charts, we agreed that Torsten will probably stay near the bottom for life due to thin genetics, and that this is fine as long as he's growing, which he is now. Since I've been nursing him all night, every night (every 1.5-2 hours), she said that we could start cutting back on those feedings and finally try to get some sleep. However, we do need to keep the effort going and feed him the same as we have been during the day. So by day, Torsten will continue to nurse constantly and eat plenty of carb-filled veggies, fruits and yogurt. He definitely has a hearty appetite and shocks people when they see him eat for the first time. Even though he'll only eat the healthiest foods I've offered him, he nearly needs a shovel to get it in his mouth fast enough. Mealtime has become seriously amusing in this house!
Our good friend Allison (MD in Atlanta) suggested that we discuss with our pediatrician the possibility of seeing a geneticist to check if all of the issues we've had so far could be related. When I mentioned this today, Torsten's doctor agreed that it would be a good idea. So even though we would like to cut back on doctors and appointments, we do want to make sure that we're not missing anything.We'll see this new doctor on February 11th and will hopefully be able to get some questions answered and move forward.
The pre-op appointment with the ophthalmologist went fine as well. He tried to get another round of measurements of Torsten's eyes, which seems to be a struggle. He'll measure again on Monday morning, but other than that, we're set to go. We have to be at the hospital at 5:30am on Monday and the surgery will be at 7:30am. He again told us that there should be very little recovery and that once he's "under" and in the operating room, it should go quickly. He also verified again that the worse of the two eyes is shutting down. Since we weren't clear on what that meant, he explained that when there is double-vision, one eye will begin to be shut down by the brain and that if not corrected, it will eventually cease to function. Glad we're getting this taken care of sooner than later!
Thank you all again for your calls, texts, emails, thoughts, love and prayers. We can't even begin to tell you all how great it is to have such a loving, huge and widespread support network. We love you all and will let you know how Monday goes once it's over.
Friday, January 18, 2013
Strabismus
We've just been to see our second pediatric (neuro) ophthalmologist and it seems that Torsten will need surgery on both eyes after all. We were hoping that the second opinion would be that we could do something non-surgical to fix the problem, but it wasn't meant to be.
According to the newer doctor, Torsten's case is bad and should be corrected ASAP. One of his eyes is already shutting down, so the faster we go for the fix, the better off he'll be. He also told us that, in general, 30% of children that have this procedure will need to have another operation down the road. He said that it's very likely that Torsten will need an additional operation. He believes that this surgery will get him through the next few years, but that we'll be back doing this again in the not-so-distant future.
So we're scheduled. We'll have pre-op on January 25th and the actual surgery will be on the 28th. The good news is that it will only take about an hour and the doctor says that recovery will be minimal. Other than redness, he won't have scarring and hopefully won't be in pain.
For those who, like me, had no idea what strabismus is, here is some basic information:
Strabismus:
If your toddler's eyes seem to look in different directions or not focus on the same object, he may have strabismus — a lack of coordination between the eyes. They may appear to be crossed or one may seem to drift inward, outward, or upward. Strabismus can be constant (meaning the eyes are always crossed or misaligned) or intermittent (meaning it happens now and then).
If your child has strabismus and it isn't treated, his brain could start ignoring the input from one of his eyes, eventually causing the vision in the ignored eye to deteriorate. This condition is known as amblyopia or lazy eye (see below). Depth perception could also be damaged.
Causes:
Sometimes strabismus is present at birth. The condition seems to run in families, but can also show up in children with no family history — and when that's the case, it sometimes indicates a more significant vision problem. Those who are farsighted also seem to be at higher risk.
So for now, we'll just keep constantly feeding our hungry (and now growing!) little guy and will continue to enjoy every bright and happy day that he provides us! Lots of love to you all.
According to the newer doctor, Torsten's case is bad and should be corrected ASAP. One of his eyes is already shutting down, so the faster we go for the fix, the better off he'll be. He also told us that, in general, 30% of children that have this procedure will need to have another operation down the road. He said that it's very likely that Torsten will need an additional operation. He believes that this surgery will get him through the next few years, but that we'll be back doing this again in the not-so-distant future.
So we're scheduled. We'll have pre-op on January 25th and the actual surgery will be on the 28th. The good news is that it will only take about an hour and the doctor says that recovery will be minimal. Other than redness, he won't have scarring and hopefully won't be in pain.
For those who, like me, had no idea what strabismus is, here is some basic information:
Strabismus:
If your toddler's eyes seem to look in different directions or not focus on the same object, he may have strabismus — a lack of coordination between the eyes. They may appear to be crossed or one may seem to drift inward, outward, or upward. Strabismus can be constant (meaning the eyes are always crossed or misaligned) or intermittent (meaning it happens now and then).
If your child has strabismus and it isn't treated, his brain could start ignoring the input from one of his eyes, eventually causing the vision in the ignored eye to deteriorate. This condition is known as amblyopia or lazy eye (see below). Depth perception could also be damaged.
Causes:
Sometimes strabismus is present at birth. The condition seems to run in families, but can also show up in children with no family history — and when that's the case, it sometimes indicates a more significant vision problem. Those who are farsighted also seem to be at higher risk.
So for now, we'll just keep constantly feeding our hungry (and now growing!) little guy and will continue to enjoy every bright and happy day that he provides us! Lots of love to you all.
Friday, January 11, 2013
We're appointed
I'm not even sure how to keep track of all of the appointments we have. We have appointments for Torsten to get his weight checked by the pediatrician, get his eyes checked and double-checked by ophthalmologists, have his bladder checked by the urologist, have pre-op done at the hospital, have surgery and follow-ups with the neurosurgeon and try to find time for some playdates. He's a busy guy and I believe he needs a personal assistant. Until then, I'll have to do.
For now, we'll be checking Torsten's weight regularly and are waiting for the urologist and the second ophthalmologist to schedule appointments for as soon as possible. The good news is that we're on the surgery schedule with the neurosurgeon, and Torsten will go in for his de-tethering operation on March 22nd. Until then, we're concentrated on growing, gaining weight and having as much fun as possible every day. We'll post updates whenever there is more information to share. Until then, thanks to you all for your support, love and prayers!
For now, we'll be checking Torsten's weight regularly and are waiting for the urologist and the second ophthalmologist to schedule appointments for as soon as possible. The good news is that we're on the surgery schedule with the neurosurgeon, and Torsten will go in for his de-tethering operation on March 22nd. Until then, we're concentrated on growing, gaining weight and having as much fun as possible every day. We'll post updates whenever there is more information to share. Until then, thanks to you all for your support, love and prayers!
A skinny guy
Happy New Year everyone! It's been an eventful couple of weeks since the holidays, and although it was wonderful to see our family and so many of our friends, we're also happy to be home.
We had Torsten's 6 month checkup earlier this week and unfortunately, our little man had lost weight since his 4 month appointment. This is obviously not the direction babies are supposed to go, and Torsten's doctor is extremely concerned. We left the appointment with loads of formula and were determined to put some weight on this kiddo. When Torsten was a newborn, he was never able to keep formula down, but we figured that he would now, at 6 months, be able to stomach it. We were wrong. After 3 meals and 3 failed attempts to get him to take it in a bottle, I sneaked some into his morning cereal. He ate the same amount as always, but his little tummy wasn't fooled by the switch. He threw up for several hours, went through 4 outfits (so did I) and had no interested in any other solid food for the rest of the day. This was not the answer we were looking for!
After talking to a wonderful nurse, we decided to scrap the formula, continue nursing him like a newborn (every 1.5 - 2 hours pretty much around the clock) and get more fat and calories into him with nearly any food that he'll eat. I made him creamy whipped potatoes (he hated them), pureed pasta with butter and cream (he hated it) and made him a milkshake using half-n-half and a little sweetened condensed milk (he hated it). After nearly giving up on any new heavier foods, I offered him some French cream cheese whipped with pureed fruit. He loved it! So we're doing a lot of yogurt and cheese now in addition to seemingly constant nursing.
We were supposed to go back to the pediatrician's office on Monday, Jan. 14th, but I called this morning (Friday) and requested to come in and have him weighed. If he was still losing weight, I would know that what I'm doing is not working and that I needed to change tactics over the weekend. The great news is that he somehow gained 1/2 of a pound in 3 days! I didn't even know this was possible for a 12 pound baby, but we'll take it! We even weighed him twice to make sure. There is still cause for concern and we'll have to go in more often for checkups until he catches up, but he's on his way! He's still over 3 pounds off from "normal", but given his genetics, he'll probably never be normal. :)
We had Torsten's 6 month checkup earlier this week and unfortunately, our little man had lost weight since his 4 month appointment. This is obviously not the direction babies are supposed to go, and Torsten's doctor is extremely concerned. We left the appointment with loads of formula and were determined to put some weight on this kiddo. When Torsten was a newborn, he was never able to keep formula down, but we figured that he would now, at 6 months, be able to stomach it. We were wrong. After 3 meals and 3 failed attempts to get him to take it in a bottle, I sneaked some into his morning cereal. He ate the same amount as always, but his little tummy wasn't fooled by the switch. He threw up for several hours, went through 4 outfits (so did I) and had no interested in any other solid food for the rest of the day. This was not the answer we were looking for!
After talking to a wonderful nurse, we decided to scrap the formula, continue nursing him like a newborn (every 1.5 - 2 hours pretty much around the clock) and get more fat and calories into him with nearly any food that he'll eat. I made him creamy whipped potatoes (he hated them), pureed pasta with butter and cream (he hated it) and made him a milkshake using half-n-half and a little sweetened condensed milk (he hated it). After nearly giving up on any new heavier foods, I offered him some French cream cheese whipped with pureed fruit. He loved it! So we're doing a lot of yogurt and cheese now in addition to seemingly constant nursing.
French cheese face
We were supposed to go back to the pediatrician's office on Monday, Jan. 14th, but I called this morning (Friday) and requested to come in and have him weighed. If he was still losing weight, I would know that what I'm doing is not working and that I needed to change tactics over the weekend. The great news is that he somehow gained 1/2 of a pound in 3 days! I didn't even know this was possible for a 12 pound baby, but we'll take it! We even weighed him twice to make sure. There is still cause for concern and we'll have to go in more often for checkups until he catches up, but he's on his way! He's still over 3 pounds off from "normal", but given his genetics, he'll probably never be normal. :)
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