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.