Plenty of Therapy

I keep hearing that people are still checking in on the blog and that I haven't updated it in ages, so I guess I should get busy! We appreciate that so many people are concerned and care about our sweet boy.

On one hand, things have slowed down since our last entry, but on the other, we're still keeping super busy. In general, Torsten is doing absolutely great. He's still extremely easy going and happy. He's taken reading to a new level and that's nearly all he wants to do. He loves having books read to him, but he's also fine just "reading" by himself and possibly even prefers it that way. He could "read" for hours on end.

We started physical, speech and feeding therapy in August and are still going strong. We started with feeding and light physical therapy. After several appointments with the speech/feeding therapist, she started to believe that Torsten's feeding issues were not behavioral. It took her getting vomited on a couple times, but he made a believer out of her. Once she saw that there was a larger problem at hand, she suggested that we see an ear, nose and throat specialist, so we did.

The ENT specialist told us that Torsten's tongue was definitely still tethered, or tongue-tied, even though we'd had his tongue clipped as an infant. He said that this could be part of his eating and speech issues, but that we shouldn't expect miracles from operating on it. With that being said, his suggestion was to operate as soon as possible because waiting to de-tether his tongue would most certainly lead to bigger issues. So Torsten had his most recent, and easiest, surgery during the first week of September. After the surgery, the doctor told us that Torsten's tongue was tethered much worse than he originally thought, and that he was glad we went forward with the little operation when we did.

Back at home later that day, Torsten was doing great. There was almost no recovery whatsoever. By the end of the day, he was blowing raspberries for the first time. Within a day or so, he was eating whole pasta, chunky food and crackers without choking and/or vomiting. We weren't prepared for miracles, but this felt like a major victory already. Now Torsten's favorite meal is Indian curry with fresh fish. He's become quite the adventuresome eater!

With his eating issues on their way to being solved, we requested that his feeding/speech therapist begin concentrating solely on speech. Unfortunately, to date, Torsten has not made any baby babble noises. He makes a lot of noise, but they are all breathing and belly noises - a lot of grunting, coughing, lip smacking and squeaking by sucking in air. We're still working with him constantly, but the only progress we've seen is that he's trying to mimic us, even if that only includes moving his mouth into an "O" shape with no noise. Even though he's not talking, he understands so much of what we say. He definitely takes part in conversations in his own way - and he has a lot to say!

We're seeing some slow progress with Torsten's motor skills. He's still not crawling, but he doesn't let that stop him from getting around. He does a kind of army crawl and rolls everywhere, and fast! He just started going from a sitting position to laying down, which was a big step in the right direction. I love seeing him do it - it's SO orderly and cautious. He lays straight down on his legs and very slowly rolls to one side so he won't hit his head on the floor. He's definitely our kid!

The only other issue that we're having is with Torsten's eyes. We are going back to the ophthalmologist next week to follow up from his surgery and to have him checked out again. His eyes are "wandering" again badly, and now it seems like it's not just his bad/left eye. We were patching his right eye for an hour each day, but now we're not even sure which eye should be patched, so we're waiting until we see the doctor.

Other than keeping up with all of the appointments, we're just enjoying our happy kiddo and staying busy! It's hard to be overly concerned about a kid who is so extremely happy all the time. Even if it's at his own pace, he IS progressing, so we're confident that he will be fine. Whenever we begin to worry, Torsten will do something new and flash his toothy grin, and just as quickly we're all fine again. He's such an absolute joy and we're so fortunate to be his parents. He brings a smile to the face of absolutely everyone he meets. He is the love of our lives.

Thank you all for caring for our sweet boy. I'll try to be better about posting updates!

Love,

The DeHarts

Torsten "reading", October 2013

Baby steps

It's been a while since our last entry, but I wanted to check in and let everyone know how our little guy is doing. Over the last three months, we've gotten more baby teeth, had a 1st birthday, gone on our first whole family beach vacation, added a nanny to our family and lost a parent/grandparent (Ryan's father). It's been an eventful few months, with no sign of slowing down anytime soon.

Torsten had a follow up with his urologist today to run a second set of urodynamics tests. Although the tests were still invasive, this round went much more smoothly than the last. He only really cried when they put in the catheter and when they removed it - he was quite the trooper throughout the actual procedure. I did have to do some mid-test singing, but I've done more embarrassing things for much less. We were able to meet with the doctor afterward and although he believes there could be an issue with bladder spasms, he said that there is an equal chance that what he's seeing could be normal for Torsten's age. We will need to go back for a sonogram in one year, but nothing between now and then, which we see as very good news!

We also had Torsten's one year checkup a couple of weeks ago and even though he's not huge, he's up in weight to the 20th percentile (up from being off the bottom of the charts). We're thrilled that he's growing and is back on the charts for size! Unfortunately, he's still quite behind in development - he hasn't crawled, pulled himself up on anything to stand, doesn't do any kind of baby babbling, seems to be having some eye and possibly vision issues and still isn't eating finger/whole foods. Because of this, his doctor has started him on both physical and speech therapy and suggested that we see his ophthalmologist again. We will have his first therapy session at our house on August 5th. We followed up with his ophthalmologist yesterday and he believes that the muscles in Torsten's eyes are keeping them straight about 90% of the time, which he says is good. He is also sending us to The Retina Institute to have this as well as his vision checked in more detail.

On the very bright side, Torsten is still constantly smiling and laughing, loves playing peekaboo and thinks it's hilarious, still loves reading and already has Nanny Emily wrapped around his chubby little finger. I hate that I'm no longer able to spend every minute with him myself, but we've managed to add a wonderful and loving person to our family and I'm reassured everyday that Torsten is in good hands and is loving life. We are so proud of our gentle, kind and loving little guy. He's so happy and sweet and every day is brighter because of him. We're sure that he'll catch up and that he's just decided to rest a little after a very eventful first year in this world. He'll do everything in his own time.

We hope everyone is having a great summer and that we get to see you each again soon!

Lots of love,

Ryan, Tasha & Torsten

Because just eating a cake is boring - June 28, 2013

Almost there!

To begin with, Torsten is doing amazingly well. We're not sure if it's just natural, but fast development or if it could be somehow related to his cord release surgery, but he has very quickly become much more flexible, is suddenly able to sit on his own without crying or falling within a couple of seconds and has started filling his diaper more easily and very regularly (less purple face and crying...). On the flexibility, Torsten could barely reach his toes until a couple of weeks ago - today he put them in his mouth for the first time. Also, before surgery, we had been working with him on sitting on his own for months. He could stay up for a few seconds before falling, crying or throwing up. He can now sit up completely by himself.

There are only a few lingering things that haven't quite gotten back to normal. We're still having a little trouble with pain. We tried to switch Torsten to ibuprofen at night a couple of weeks ago, but he screamed and cried for over two hours before finally going to sleep, so we put him back on the hydrocodone. Unfortunately, we ran out of hydrocondone a few nights ago and have been giving him ibuprofen since with the same reaction - screaming, crying and very little sleeping. I'm trying to give it a little longer before consulting with the neurosurgeon. Other than pain, we still can't give Torsten a regular or sponge bath because it hurts him and seems to badly irritate the incision (we thoroughly wipe him down with wet cloths each night), plus, we still have him in disposable diapers with the back folded way down, since the incision is still scabbed/peeling off/raw again. Even with these minor issues, we are so thrilled with the progress that Torsten has made and with the immediate improvements we've seen in him.

We met with the neurosurgeon a little over a week ago for Torsten's follow-up appointment and she too was thrilled with his progress. She thought that he looked great, that the incision was looking fine and that she wouldn't need to see us again, unless there were issues, for a year. She did recommend that we keep him on painkillers at night for a while and believes that, even though he's a tough little guy, he's still having pain. Considering our recent experience with the switch to ibuprofen, I think she's probably right.

So since everything is getting back to normal and the few remaining issues are very manageable, Torsten and I will be flying to Illinois this weekend. Ryan will be in Costa Rica for work, so we decided to head north for a week before I do a 10K in the Illinois Marathon on April 27th with my childhood friends Matt and Tim Hutti. I hope I can keep up with them!

We're so grateful for all of our friends and family and the support we've had over the past few months. We know how fortunate we are and are just so thrilled at how well Torsten is doing. We knew he was strong, but he still amazes us everyday. We're so close to putting this all behind us and are more than ready!

Working back toward normal

The last week and a half has been wonderful, challenging and scary depending on the moment. We came home from the hospital last weekend and were thrilled to be home, but having Torsten away from doctors and nurses was also a little overwhelming. We were and have been closely watching his incision, keeping track of his bladder and bowel function, keeping a notebook with the times he's been given any of the 5 medications he's on and were taking his temperature every couple of hours.

For the most part, Torsten has done great. He's been such a trooper and has not cried much, but instead has mostly picked up his normal activities where he left off. However, we started noticing a low-grade and lingering fever early last week, which wouldn't usually be concerning, but was strange since we've had Torsten on fever-reducing pain relievers around the clock. Around the same time, his incision started looking a little rough. It has re-opened slightly a couple of times at night, but has closed and dried back up by morning. We've been in very close contact with the neurosurgeon's office and have been given the guidelines for when to go to the ER, which we will avoid if at all possible. We're just being extra cautious until Thursday, when we return to the surgeon's office for a check-up.

For now, we've stopped giving Torsten sponge baths, since they seem to severely irritate his incision and hurt him more than they're worth. He'll be getting a good wipe-down every night, but nothing more. We've also stopped trying to cut back on his pain meds for the moment and are keeping him on ibuprofen and tylenol during the day and hydrocodone at night. Torsten was in a lot of pain two nights ago - we couldn't lay him on his back and had a hard time finding a way to get him comfortable. It was terrible to see him so upset and hurting so badly, so we're not going to push him quite yet.

All things considered though, Torsten is truly doing fantastic. He's such a happy baby that we have to remind ourselves that he had fairly major surgery less than two weeks ago. We're looking so forward to him being completely healed and putting this whole ordeal behind us. We know it's coming soon and are very ready! Thanks again to everyone for your amazing love and support!

Torsten's new wheels - he LOVES them!

We're out of here!

After a bit of a bumpy morning, Torsten seems to be doing great. He woke up every 3-4 hours all night hungry and with pain, but after a new dose of pain medication would kick in, he'd be back out for a while. He woke up this morning and nursed normally, but then seemed like he was still hungry/thirsty. We gave him some yogurt and water, which seemed to help at the time. However, he was fussy, didn't have any wet diapers and refused to eat for the next 5-6 hours. He eventually ate a little bit, but his diaper is still dry, so we're going to keep a close eye on both issues.

We also finally got the clear to hold him! After not picking him up for ~30 hours, I was dying for a little squeeze! We had a long family hug on the couch, but then realized that it's still more comfortable for Torsten to be laying flat. He's back in the crib sleeping now, but just to know that we can hold him when we want or need to is a huge relief. 

Since all of his vitals look fine, they were able to disconnect all of the monitors from our little guy. They also removed the IV from the top of his head, so he's looking much more like a baby and less like a mummy. :)

In general, the nursing staff here has been mostly hands-off. I'm not saying that this is a bad thing. If anything, it has prepared us for all that we will be doing once we leave. However, since we are doing everything for Torsten at the moment anyway, we decided that we could just as easily be doing it from home. We met with the neurosurgeon on duty a little while ago and requested to go home. He said that he thinks this is fine and is now working on our discharge for later this afternoon. We're going home!

So we've just learned how to care for his incision, we're getting plenty of pain meds, are keeping an eye on his eating and diapers and are getting our little guy out of here! I still can't say that any of this has been easy, but we've had a lot of time to prepare, other parents that have been through this supporting us and great friends, family and doctors caring for Torsten every step of the way.

I'll try to post another update over the next few days to let everyone know how Torsten is doing from home, but for now, we're just waiting for our walking papers, then are headed home! Lots of love to you all!

Tasha, Ryan & Torsten

Just after having the mummy wrap removed + first time being held in 2 days!

On the bright side

It's been a long day for Mr. Torsten. All of the anticipation and anxiety leading up to this day have been pretty miserable, but on a very positive note, we're on the bright side of the ordeal - the surgery is over. The big event that we've been stressing about for the past few months is actually over!

Even though we're past the main event, it seems like we have a way to go before we're back to normal. Torsten has had problems with pain throughout the day. We had his meds adjusted a few hours ago by the neurosurgeon on duty - they doubled the amount of hydrocodone that he's taking and increased the frequency. Things seem to be going better now and he was actually able to fall asleep a few minutes ago. The doctor also said to let the nurse know if he gets really worked up again and they can give him something to relax. The goal right now seems to just be to keep him calm, comfortable and still. Any stress or kicking around could damage his incision, which would be a huge setback. The hardest part of keeping this goal is not being able to hold him. He's getting upset about it and it's heartbreaking to have him reach out while crying and not be able to just sweep him up. Tomorrow is a new day and we're hoping we get the all clear to hold and snuggle him again. :)

We're thinking that this will probably be a long night. Our "in-room double bed" turns out to be a single and our munchkin has been reminding us fairly regularly that he needs pain medicine. However, the neurosurgeon should be coming by in the morning, and if everything looks okay with his back and his bladder, there's a chance that we could go home. From what we've heard from other parents that have been through this, the surgery is just the beginning and we should settle in for weeks of fairly intense rehabbing at home. We're hoping for a quick recovery, but are prepared to do whatever is needed.

Overall, it's been an amazing day. We may be spending our Friday night in the hospital, but our son's spinal cord is fixed, he doesn't seem to be in pain at the moment, we are watching March Madness from our room and the three of us are together. We have so much to be happy about and thankful for, including our amazing friends and family!

When the meds kicked in

When the meds REALLY kicked in

Recovering

With Ryan and Torsten asleep, I'm finally able grab a seat and jot down a little about our morning. It started early - Torsten and I were up at 3:30am for his last meal and both of us stayed up until we left the house at 5:45. We checked in around 6:00 and were taking care of physical checks and answering questions until they took him back around 8am. The neurosurgeon told us that the surgery itself would take 1-1.5 hours, but that we would be separated from him for 3-4 hours. She finished with the surgery and came out to talk to us a little after 10:00. She told us that everything had gone as expected and there were no problems except that they had to put his IV in his head after trying multiple times everywhere else.

We were called back to see Torsten in recovery around 11:30. He was slow to wake up, but cried a little more once he heard our voices. Not long after, we were transferred to our room on the Neurology floor, where Torsten started waking up a bit more. He hasn't opened his eyes much, but was very fussy and seemed to be in pain. They had already given him stronger drugs during the surgery, so all that they were able to give him up here was a large dose of ibuprofen. Luckily, after about 30 minutes, it seemed to kick in and he was able to fall asleep. He's been in a fairly deep sleep since, which is great. I'm hoping that he'll stay asleep as much as possible today, since he has to lay flat and I can't imagine how I can enforce that on an 8 month old.

My dad is planning to come to Dallas to visit us a little later, but other than that, we have no plans and are not planning to leave Torsten's bedside. They have him on a large soft foam pad, so hopefully that will help keep him still and comfortable. We haven't seen much yet, but it looks like the incision on his back is about 2 inches long. The surgeon was able to put in dissolving stitches, so hopefully that will make it a little easier to care for. 

Right now, Torsten is sleeping like an angel. Hopefully he can keep this up, sleep through the worst of it and we can get home sooner than later.

We've gotten so many messages today and appreciate every single one. Thanks so much to all of you for the love and support.

Love,

Tasha, Ryan and Torsten

Our sleeping angel/mummy

Prepping for the big week

Torsten and I had a great time visiting family and friends in Illinois, but were also glad to get home. He is a great traveler and was an angel on the flights both ways. It was great to get to spend so much time with Grandma & Grandpa Marquis and Torsten and I wish they lived closer. We both got spoiled for 9 days!

Torsten is still having episodes/spasms, but they continue to get less severe and more infrequent. At this point, we're just watching him for changes - the episodes picking back up, changing or getting worse. Overall, things have gotten much better, so we're trying not to worry!

We had Torsten's pre-surgery urology appointment at Children's on Friday. They did a sono/ultrasound and ran urodynamics, then we met with the urologist. The sonogram was easy and Torsten did great. Unfortunately, urodynamics are not quite as simple. They had to put in a catheter, fill his bladder and take x-rays throughout the process. Luckily we were able to stay with him the entire time. While Ryan and I were getting equipped with the x-ray covers, Torsten pulled out the first catheter. The second catheter didn't go in as easily as the first, but after a few tears from both mom and T, we were able to get through the test. Torsten was in some pain and had some bloody diapers throughout the night, but as we already know, he's super resilient and had recovered by the next morning.

The urologist did not see any obvious issues present at the moment. However, we will have to repeat the same tests after surgery, in about three months to check for any changes. He also told us that we will not know for sure if there are problems until we try to potty train Torsten. Then he warned us that, because Torsten is a boy and could have problems with potty training regardless, we may not even get to training for several more years. I'm now wondering what I'll be thinking of cloth diapers when I'm still washing them 4 years from now...

We're now gearing up for the big week ahead. We have eye surgery follow-up with the ophthalmologist and 9 month checkup + shots with the pediatrician on Monday, pre-op at Children's on Thursday and finally Torsten's tethered spinal cord release surgery on Friday. Many of the details are still uncertain, as they can vary greatly from one baby to the next. We will be in the hospital a minimum of 1 night, but hopefully not more than 1 week. We'll try to update the blog as often as possible once everything starts moving.

Thanks again for all of the sweet messages and for your care and concern. We'd be lost without the support of our great friends and family!

Torsten sitting alone - finally!

Cleared for takeoff!

Since coming home from the hospital, Ryan and I have been closely watching Torsten and trying to isolate any triggers for his episodes. We've noticed that they seem to happen more often when his legs are moving. He does a "happy dance" both when he's eating and playing, which is when he seems to have the most episodes/spasms. Ryan held his legs while Torsten was eating and that seemed to both slow down the frequency and lessen the severity of them. We now believe there is a chance that this could be nerve related and possibly linked to Torsten's spinal issue after all. We left a message for his neurosurgeon on Thursday morning to discuss everything that's happened in the past week and are still waiting to hear back from her. It's been our experience that her assistant isn't the best at relaying messages, so our pediatrician will start texting and calling the surgeon directly if we haven't heard back by Monday. :) We love his pediatrician.

Even though Torsten is still having the episodes, they have slowed back down and are not nearly as severe as they were earlier in the week. We're still working to figure out what's going on, but are glad that he seems to be going in the right direction and that we've ruled out the most dangerous possibilities.

On another positive note, we just got the final clear from the pediatrician last night for Torsten to travel. He and I have been planning to fly to Illinois to visit my family next week, but weren't sure we would be able to make it. We're looking so forward to seeing everyone and are starting to pack up the warmest baby clothes our little southern boy has.

Even though it's been a long week, we've been so amazed at the strength, bravery and positive attitude of our son as well as the outpouring of love and support from our friends and family. Thank you all again!

We're all ready for Illinois!

We're home!

We just got home from Children's and are thrilled to be here! Although we wanted to stay until they figured out what exactly is behind Torsten's episodes, they've ruled out the most dangerous options, so there wasn't much of a reason to stay another night.

The results of the EEG from yesterday were normal, so we only had blood work and an MRI done today. We did not have to do the spinal tap, which we were thrilled about. We're still waiting on the results of the blood work, but in general, all tests came back normal.

Before leaving the hospital, we were told several things:

• Not finding anything significant on the major tests is good news since it rules out full seizures, epilepsy, etc.
• He may continue to have the episodes, and if they get worse, we are to go back to the hospital immediately.
• The doctors are concerned about the rapid growth of Torsten's head + the overall size compared to the rest of his tiny body. They will continue to monitor this.
• We will continue to see a neurologist to monitor his progress and will also see Torsten's pediatrician in parallel.
• It could take months or sometimes longer to diagnose such issues. Sometimes the only way to figure it out is to watch him develop with age.

Since getting home, we've had several episodes, but nothing worse than what we've been seeing, so we're just trying not to worry. 

For today, we are just very happy to be home. We may all finally be able to sleep longer than a few minutes at a time! And now it's time to disinfect everything that was dragged through the ER/hospital...

Thanks so much for all of the sweet calls, texts and emails. We're again blown away by all of the love from our friends and family!

Lots of love to you all,

Ryan, Tasha & Torsten

Spasms

It's been a long couple of days. For the past week or two, Torsten has been having little spasms. Because they were minor and very rare in the beginning (1-3/day), we didn't worry and passed it off as gas or some other small form of discomfort. However, over the past few days, they have picked up in frequency and have gotten drastically worse (by the end of yesterday, he'd had >50). I texted Torsten's pediatrician early yesterday afternoon to tell her what was going on and to ask for her to call me when she had a second. She told me that she was out of town, but wanted him seen immediately by another doctor in her office.

We went into the pediatrician's office later in the afternoon and had him checked out. Luckily, I had recorded a couple of time periods at home to catch a video of what was happening. After showing this to the doctor, she said that she wanted us to immediately check in at Children's. She tried to get us directly admitted, but was told that with possible seizures, the risk is too great and we'd need to come through the ER. To make a long story short, we sat in the ER from 7pm-2am, when we were finally transferred to a regular room. We were all exhausted and got a little sleep here and there when we weren't being woken up by nurses taking vitals and checking in.

Today has been full of doctors, nurses, specialists and testing. We met with a group of neurologists early this morning to discuss the next steps. They told us that we would need to have a battery of tests done to try to diagnose the problem. These include urine and blood work, an EEG, MRI, sono and spinal tap. We knocked out the urine, part of the blood work (they need to take too much for one day + his veins weren't cooperating), the EEG and the sono all today. We don't have any results back, but should hear from the neurology team later tonight. They have told us that if the EEG results are good, we may not need the spinal tap, which would be wonderful. One less invasive test...

We're sorry that we haven't called everyone to tell you what's happening. This all happened very quickly and we've been running from one test to another all day. Torsten has still been having the spasms most of the day and they seem to have increased a bit later this afternoon. We're confident that the doctors here will figure out what's going on and that we'll hopefully be home in the next day or two. We'll post updates as they become available.

Lots of love to all of you from myself, Ryan and our little warrior!

Fully connected, but still smiling! He liked when the nurse started washing his head to get the stickies off. :)

Genetically inclined to be a baldy

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!

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!

Our adorable little pirate

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

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!

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!

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.

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.

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.

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!

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.

 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. :)