Kicking off 2017

2017 has gotten off to a rocky start. On February 16th, my dad and my kid's "papa" was killed on his motorcycle. He was wearing all of the right gear, was going the speed limit or under and was on his side of the road. The oncoming driver was in a Dodge Ram, was driving on a suspended license, was on his phone, was distracted and was on the wrong side of the road. He hit my dad head-on just before noon on a beautiful day, when my dad was headed out for a long ride in the sunshine. All of our lives turned on a dime and nothing has been the same since. The boys still ask for their Papa whenever anyone comes to our front door or they see his car in our garage or they see a picture of him or even a picture of a horse or a cowboy. Our lives have been turned upside down and we still haven't regained our footing.

But then there are the people who were the light of my dad's life, and are still the light in ours...

Torsten has now been in the PPCD (Preschool Program for Children with Disabilities) for nearly one year. He has done amazingly well and has made great strides in both curriculum and therapy. He's walking a little more steadily, has started coloring, knows his letters and a few numbers, is starting to recognize some emotions in others and has started putting a few words together. For over four years, I've asked him about his day, with no response or acknowledgement that I'd even asked him a question. Yesterday was the first time that I asked him "how was school today?", and got a full response. He rambled several sentences of Torsten-speak that, although I couldn't understand, sounded amazing and was the first attempt that we'd ever seen him make at anything conversational. Although this may seem minor for a 4.5 year old, it's HUGE in our house.

We spent the last couple of months going through the process of having Torsten evaluated for ASD (Autism Spectrum Disorder). Although this diagnosis seemed obvious to us and wasn't expected to change our course, we believed that it could make it easier for those outside of our home to understand how they could best work with and help him. The evaluation was lengthy, but it was comprehensive and extremely helpful in the end. Torsten was diagnosed as autistic, and because of it, they have made a few changes to his therapy schedule and behavior goals. It just helps to paint a better overall picture of his needs, as well as the best way forward for him at school and in therapy.

Last fall, we had some tests run on Torsten's bladder function, and had his sacral dimple and spinal cord re-checked. We've had some issues with infections in the dimple area, and have noticed some indications that his cord could have re-tethered. His bladder results showed issues, and the MRI confirmed that his spinal cord had re-tethered since his last spinal de-tethering surgery in 2013. Although the neurosurgeon suggested that we schedule surgery last fall, I asked that we wait another six months and check for improvement before operating on our boy again. We're now nearly at the six month mark and have again run into issues. Torsten is still not fully potty training, is extremely stiff when walking, falls regularly and now also has a very infected and bleeding sacral dimple. We're working on controlling the infection, but the general surgeon has requested to see Torsten again asap. He will likely be operating on/cutting out T's dimple during the same operation where the neurosurgeon will de-tether/cut his spinal cord. We'd like to prevent Torsten from having multiple operations if we can help it. We're hoping to get everything scheduled early this summer, to give T plenty of recovery time before school starts in the fall.

We're also researching Torsten's best options for school next fall, since we are not in favor of the direction that the district has decided to send him. We're planning to request a transfer, and if that fails, we'll move on to other options. We still have a few months to make a decision, but would like to have our options on the table before the end of this school year. Regardless of the direction we decide to go with the public school system, we plan to keep Torsten at his private pre-K/Kindergarten. They have been absolutely wonderful to him and us, and even if it's just after school care, it's a wonderfully positive environment and Torsten loves his friends and the staff.

Beyond Torsten's health and schooling, he's such an absolute joy. Now that he's beginning to appropriately react to his sibling's emotions, the dynamic in our household is shifting. Torsten now acknowledges that sadness and crying is not a reason to hit or laugh at them, and even brings them their lovey if they're upset. Although he doesn't actively play with any children, his siblings included, he plays in parallel to them. Even though he's starting to show empathy, he's spent the past couple of years torturing Dane, stealing his toys and doing everything possible to annoy him. Now that Dane has grown up a bit and is stronger, he can better hold his own and gives it back to Torsten in spades. Dane now speaks in full sentences, has an interesting sense of humor and is already learning the art of charm. As for Mila, our "little" girl has also proven that she needs no one to protect her, is fully capable of standing up for herself, and regularly beats the tar out of her big brothers. She's a tough little cookie and I couldn't be more proud of my smiley, chunky-cheeked tomboy.

Our little family is so perfectly imperfect and I'm grateful for each member everyday. Our hearts have recently been broken in a way that they'll never fully recover from, but slowly we're finding one thing at a time to smile about.

Love from our family to yours.

Dad with the kids - January 29, 2017

Family vacation to Colorado - April 2017

Torsten - March 20, 2017

Dane - March 20, 2017

Mila - March 20, 2017

The real reality

Having a special needs child is hard. Admitting to yourself and others that it's not easy or always wonderful is even more difficult. Our friends and family are always telling us how great it is that we stay so positive. We do try, but as another PKS mom told me a while back, eventually that ends and you crash into reality and start being honest and real. It's been a year and a half since Torsten was diagnosed, but there are still days that it feels so fresh and painful and raw.

Nothing that I've said or written about Torsten has been incorrect. However, we've left out a lot of the darker feelings and details that go along with his/our situation. The feelings that seem to follow me around are grief and guilt. I didn't even have a name for these feelings until recently, but "grief" and "guilt" seem to be a good fit. I may be driving to the grocery store and end up crying for 10 minutes before I even make it out of the car. Or wake up in the night and look at my sweet boy in the monitor, only to spend the next 30 minutes choking back tears and worrying about what his future holds. 

The grief is consuming. Anyone who has ever lost a loved one knows that feeling - the loss, the ache and the hole that it leaves in your life. We still have our child, which makes us extremely fortunate. However, I grieve constantly for the childhood and life that I wanted for him and the child that we (all/most parents) assumed we would have. This feeling of grief leads to guilt, or more guilt than the usual mommy guilt. I want to be the mom who is just so grateful for my boy, and I am. But I also wish that he didn't have a hard time getting around, or that he didn't fall all the time, or that he could talk or articulate his feelings and needs, or that he didn't get incredibly sad for long periods of time without being able to tell us why, or that he didn't get sicker than his friends or siblings at the drop of a hat...

Although he's not old enough to recognize the things that set him apart from other kids, like his brother or sister, he is definitely showing signs of frustration. And the older he gets, the wider the gap grows between Torsten and his peers. All things considered, he's doing amazingly well in school. He generally behaves, and is now even able to complete a few multi-step tasks (washing hands, with soap, rinsing, turning off the water, getting a paper towel, throwing it away). He is in love with his teacher, Ms. Mitzi, and does his happy dance whenever he sees her. We're dreading the day that he moves up to the next class and leaves Ms. Mitzi and Ms. Sam, who we've all come to know and love. They have shown him love and compassion that I would have never expected from teachers. Not only is he their pet, he's a mascot of sorts for his class. When he walks in, the other kids swarm around him to give him hugs, kisses and pats on the head. I love the innocence of this age and wish that kids would forever stay as kind as they are at three.

Medically, Torsten is doing well. He's small for his age, but that's nothing new, and he generally stays healthy. He has a constant runny nose and his poor eyes are glued shut every morning, but we've adjusted and no longer panic, or think he's ill everyday. We're having some issues with his sacral dimple (tiny hole at the base of his back/top of his bum), and will likely have 1 very minor, and 1 not-so-minor surgery over the next few months. The first will be to clean it out, and the second (if needed), will be to cut the dimple out completely and prevent further issues. If the second surgery is necessary, which we believe it will be, we'll also have a very minor procedure done at the same time on his eyes, which will help with the morning "yuck".

He has had a few strange episodes of extreme fatigue, and on one morning, it took us 2 hours to wake him up. Of course, just as I was preparing to call 911, he snapped out of it and seemed fine. We got in to see the neurologist, since we suspected that he was having seizures in the night. She sent us for a quick EEG, so that we could get a baseline to compare to if/when he had another episode. We expected the results to show nothing, but unfortunately, they did show seizure waves, or background seizure activity, even though he did not have a full seizure during the scan. We're now figuring out the next steps, and are being scheduled for a 48-hour EEG. We don't want to make any assumptions or worry prematurely, but it's also something that we don't want to let go for too long.

We're also running down a list of common issues with PKS kids, and are checking off one at a time. Each "check" comes with an appointment with a specialist, and generally some tests/scans. We accidentally missed checking a few boxes since Torsten's diagnosis 1.5 years ago, but we're catching up this summer. Additionally, we're beginning the process of having him evaluated/diagnosed as autistic. We did not think that this would matter in the grand scheme, but we're starting to see some troublesome behaviors, autistic behavior is common with our kids, and autism is significantly more common and well known than PKS. Having the diagnosis can make it easier for doctors and therapists to understand some of the behavioral aspects and needs of our children, and our hope is that it will help us get the best possible therapy for T.

We finally got to meet ~50 other PKS families last month when we traveled to Chicago for the bi-annual PKS conference. We met such amazing parents, caregivers and kids, many traveling overseas for the occasion. This experience was life-changing for us and for Torsten. He believed that every activity was planned just for him. From swimming, to snow cones, to painting, to a bouncy house, and finally a petting zoo, the whole trip was a dream come true for him. And since we left Dane and Mila with Grandma & Grandpa Marquis, Torsten had us all to himself. He had such a ball and we were sad to leave all of our new friends to get back to the real world. The support that our PKS family provides on a daily basis is more than I could have ever hoped for. I don't know how I would have made it through the past year without them.

And last, but far from least, Dane and Mila are developing so quickly that we can barely keep up. Dane's vocabulary is growing by the day, or seemingly by the minute. It's terrifying to hear your own words coming out of the mouth of a baby! I've never been so conscious of both what I say and the tone I use, since both will be used again, verbatim, by my adorable 2 year old at the most embarrassing possible moment. Mila says "DaDa" constantly, and generally just eats, sleeps and smiles. She does have a *bit* of an attachment to me, but I know that ends eventually, so I'm soaking it up while she still thinks I hung the moon. Ryan and I are loving living in Old Town Lewisville, have amazing neighbors and particularly enjoy our 4 block commute to the distillery. We feel like we've found "home" and have no plans to ever leave this neighborhood. When people ask where we live, we tell them "Mayberry".

Life is far from easy, but I know that someday, when I'm missing the good old days, it's today that I'll be referring to. Every day presents a new challenge, but our lives are good, we love each other and our kids fiercely, and things are just as they should be.

Lots of love to all of you, from all FIVE of us,

Tasha, Ryan, Torsten, Dane & Mila

Torsten riding a pony at the PKS conference in Chicago, July 2016

Torsten has become very fond of Ms. Mila. He hugs and smooches her every chance he gets. 8/1/16

My chunky smiley girl, July 2016

Dane enjoying a "naked Sunday" (we let the boys play/swim naked in the backyard most weekends)

July 2016

Update on Mister T

It's been a while since I've posted anything on T, so I thought it was probably becoming overdue. First of all, he's still the same wonderful boy he's always been. He's kind, gentle and generally happy. With that being said, he's become more of a toddler, has started having times of being very fussy, is into everything, is constantly looking for mischief and now intentionally does "bad" things for attention. The good news is that I believe a formal diagnosis for this would be that he's 3 years old.

Since Torsten's positive diagnosis for Pallister Killian Syndrome, things have started to make sense. So many of the questions we have had since he was born, now have at least partial answers. We've found a wonderful community of parents of PKS kids, who many times are the only other people in this world who understand what we're going through at any given moment. We all communicate through Facebook, which has also given a previously frivolous social media outlet new meaning to us. This group of people collectively hold more knowledge on our children's condition than most/all doctors in this world combined. There are no words for how amazing these people are and how much positive support we're all able to offer each other.

A few months back, we had the appointment at Children's to have T's ticker checked out. He sat through a very lengthy ECG like a perfect little gentleman. The test showed absolutely nothing wrong with his sweet heart. They said that there was only a very small area of the heart that they were not able to view (~3%, I believe), but that given the health of the rest of the organ, he looked great. We then met with his new neurologist two days ago at Cook's, and although she reiterated that he has an 80% chance of developing seizure activity, there is still a 20% chance that he won't. We're hopeful for the 20%, and so far, things are looking good there as well.

We're attempting to get Torsten into school as soon as possible. However, the interviews, waiting lists, applications, tuition and fees, etc. are an absolutely giant hurdle. The first school I called told me that I was over 3 years behind, since most special needs parents know that their children will require special schooling and have their kids on waiting lists from birth, or even before. According to her, we were "extremely late to the game". The search for the right school has been frustrating at best, but we're still looking. In the meantime, Torsten has 6 therapy appointments every week and is still progressing well. He is almost exclusively walking, and only crawls occasionally. He will be getting fitted into his new braces as well as a pair of hip trainers next week, so we'll see if that will help him walk more steadily. In a recent review of his original OT goals from 6 months ago, he had exceeded all of them. And although ST is slower, he's starting to make some sounds that we believe he associates with something he wants. He will get there in his own time, as he always has.

On a recent family vacation, we had Dane and Torsten sleeping in the same room for 10 days. They did so great, that we're planning to put them in the same room at home as soon as our THIRD crib is delivered. The boys are so fun to watch. They play together, mimic each other and never let the other stray far. Seeing them together has brought us more joy than we ever imagined it could. However, knowing that we're bringing home a baby girl in a few months definitely makes me a little nervous. These boys are constantly tumbling all over each other and seem to have little regard for safety or the pain inflicted on each other or us if we find ourselves in their path. I can only guess that she'll be a tough little girl.

Things are definitely becoming more challenging around this house, but overall, we're doing great. Having the boys has been and continues to be our greatest joy. We're excited about the growth of the distillery and our upcoming move into a new facility, and are looking at a potential personal move to Lewisville as well, hopefully within walking distance to work. This pregnancy has been a little tumultuous, but with exactly 14 weeks to go, things are cruising right along and all doctors and specialists say that she is doing great. Unless she has other plans, her arrival is planned for November 20th.

We hope you're all having a great summer!

Love,

Ryan, Tasha, Torsten & Dane

More on Pallister-Killian Syndrome

First of all, thank you all for your amazing support over the last week. We've had a tough month or two, but are ready to get on with our new normal.

After the Dallas ice storm early last week caused our appointment to be cancelled, we finally got in to see the geneticist on Thursday. We arrived with a list of questions, knowing that many of them could not easily be answered, if at all. I've given most of them, with whatever answers we could get below.

We also received the formal write-ups from Torsten's physical and speech therapy evaluations at Baylor. Although it is not surprising, he falls into the 2nd percentile for speech, and below the 1st percentile for physical. We will be re-starting therapy twice each week for both ST and PT. We will be rescheduling the OT evaluation that we missed for our trip to Illinois asap, but will most likely start 2 appointments/week for OT as well.

On the bright side, Torsten has been more proactive with walking. Rather than only taking steps when we initiate it, he has occasionally started turning after standing at a chair or window and will take a few steps away on his own. Although it's small, it's a huge step for him. He's also been experimenting with new sounds. He lacks confidence though, and will rarely, if ever, repeat them when we ask. Although the progress he's making is slow, we're thrilled with anything new and never fail to celebrate it.

Thank you again for all of your love and support. It means more to us than we can put into words.

Love,

Ryan, Tasha & the boys


Q & A with the geneticist:

Q: Torsten's skin sample showed the chromosomal abnormality in 5.5% of the counted cells. Does this mean that he has a "minor" case of PKS? And what does that mean for his other organs? Will they all show a 5.5% abnormality as well?
A: No - the 5.5% does not mean that Torsten has a "minor" case of PKS, nor does it mean anything for his other organs. All it means is that the abnormality was found in the sample, which means that he has PKS. The only way to figure out the percentage of cells with the abnormality in other organs would be to test all organs. Since this is not possible, we have to check for issues where we know they are likely, and treat symptoms if/as they come.

Q: Do you believe we will run into behavioral issues in the future? We can see Torsten already experiencing frustration at not being able to verbalize his wishes and concerns.
A: Some behavioral issues are quite common, but this is something that we should not worry about until it comes. Until then, we should keep up with his therapy and help him to develop his speech and motor skills.

Q: Do children with PKS have a normal life expectancy?
A: Yes and no. If children are able to survive for an extended period outside of the womb, then PKS itself will not shorten the life expectancy of a person with the condition. However, anyone with a neuro-cognitive condition will generally have a shorter life expectancy than a person without. Note: We do not believe this applies to Torsten. The doctor gave examples of how such conditions could cause a shorter life expectancy and it seems to be more about how the individuals care for themselves/attempt to care for themselves which would cause issues later in life. The other scenario would be that a side-effect of the condition could be life threatening (heart defect, epilepsy, etc.).

Q: What are the next steps for us?
A: We will need to see a cardiologist to have a full scan of Torsten's heart and check for any defects. She also highly suggested that we start seeing a neurologist to prepare for the likely possibility that Torsten will begin having seizures at some point in the future. She explained that there are only two pediatric neurology practices in Dallas and that they both take a very long time to get into. Once we are established patients, things will go much more smoothly if/when he begins having seizures and we need to see someone. She would like for us to check in with her once/year to give updates on his health, development, etc. This is more to keep a record of how he's doing than to benefit him personally.

Q: We've always believed we would like to have a larger family. Although we've been reassured many times over the past 2 years that we are not carriers of any genetic conditions, can we be sure this is true, at least for PKS? It was also strongly recommended by our OBGYN that, if we were planning to have more children, we should bank our cord blood just in case it is needed at some point later in Torsten's life, especially since we have no idea where research will be at that time. Opinion?
A: First, PKS is not hereditary. We did not pass/give it to Torsten and it is not possible that we will pass/give it to any other children. We can continue to have children for as long as possible and we will not have another child with PKS. If we do have more children, it is always a good idea to bank cord blood. However, the geneticist recommended donating it to a public bank, since when you donate, you have a better chance of receiving blood/cells if you should need it in the future. The OBGYN recommended banking it privately.

My sweet boys -

Torsten found a water bottle and was "sharing" with Dane

Torsten's official diagnosis - Pallister Killian Syndrome

We were all in Illinois last week to say a final goodbye and to bury our granddad George. I think that by the time the call came in, we were already running low on tears. On Thursday morning, February 19, 2015, the geneticist called us herself while she was on a break from jury duty. Once you've worked with a number of doctors, you know that receiving a call from them directly is ordinarily not good news. 

Torsten's skin biopsy came back positive for Pallister Killian Syndrome. Although this condition is extremely rare, we were expecting these results and were not terribly surprised. We were scheduled to meet with genetics today to work out the next steps and get all of our questions answered, but unfortunately, the Dallas ice storm has closed down most of the city and our appointment was cancelled. We'll be meeting with her asap, but as Ryan and I discussed last night, PKS is so rare, that it's not likely that she'll be able to tell us much that we don't already know.

To help everyone understand a little about this syndrome, I've listed a few questions and answers below. If you have any other questions, please send them over. If we don't know the answer, then they are probably great questions for us to take to our next appointment.

Q: What is Pallister Killian Syndrome (PKS)? 

A: Also known as Tetrasomy 12p mosaicism, PKS is an extremely rare genetic disorder. Pallister-Killian Syndrome occurs due to the presence of the anomalous extra isochromosome 12p, the short arm of the twelfth chromosome 12p. The name Tetrasomy 12p means four copies of the short arm of chromosome 12 and the name Isochromosome 12p tells you that the additional chromosome (12p) is made up of two mirror copies of itself. Mosaic tells you that cells with the extra chromosome exist side by side with cells with a different number of arrangement of chromosomes. We're still researching and trying to learn all of this ourselves. Hopefully we'll be able to share more detailed information soon.

Q: What causes PKS? 

A: No idea. According to the geneticist, this condition is completely random. There is nothing we have done to cause it and there is nothing anyone can do to prevent it. 

Q: Will we have Dane tested for PKS? If we have other children, are they at risk for having PKS?
A: No, we will not have Dane tested for PKS. Dane does not have any symptoms of PKS. He is exactly where he should be for size and development. We have no worries about Dane. Regarding other children, it is extremely unlikely that we would have another child with this condition. We recently read that our chances of having a second PKS child are less than 1/400,000,000. Since this condition is random, we have the same chance as anyone else of having a PKS child.

Q: How many people have PKS? 

A: The total number is unclear, since undiagnosed cases exist. It is thought that there are less than 200 diagnosed cases in the world. However, one US hospital estimates that there could be significantly more than this number in the US alone. 

Q: What are the features of PKS?

A: It is very unlikely that all of the following features would be present. Some features can include: hypotonia in babies (floppiness), developmental delay, learning difficulties, delay or absence of speech, distinctive facial appearance (high round forehead, broad nasal bridge, widely spaced eyes, large mouth with thin upper lip), sparse hair growth around forehead, thin or sparse eyebrows, streaks or patches of darker or lighter skin, high arched or cleft palate, short arms and legs (not proportionate to body), diaphragmatic hernia (hole in muscular wall separating the heart and lungs from contents of abdomen), seizures, permanent hearing loss, heart defects, extra nipples, feeding difficulties and reflux, large big toes and extra fingers, epicanthal folds (skin folds across the inner corner of the eye) and a large tongue that develops after babyhood.

Q: Are there things that Torsten will definitely not be able to do?

A: We are not ruling out anything. We are just now getting back into speech, physical and occupational therapy. We have every reason to believe that Torsten will walk independently (and very soon), will speak and will have as much of a normal life as possible. As soon as we meet with his doctors, we'll begin looking at schools and programs that fit his needs. 

As we have been with every other issue that we've dealt with before, we are grateful that Torsten is ours. We will continue to work with him constantly and make sure that he remains the most happy, easy going and kind child we've ever met. It's an honor to be his mama, and Ryan and I will continue to make sure that we get the best care available for him. Thank you to all of our friends and family for your continued support through this recent diagnosis. 

Love, 

Ryan, Tasha and the boys

Torsten on his balancing bike - Feb. 2015

For more information on PKS, see the following sites:

http://www.pkskids.net/

http://www.rarechromo.org/information/Chromosome%2012/Pallister-Killian%20syndrome%20FTNP.pdf

Torsten, no label

Tuesday, January 27, 2015

I've spent every day of 2015 worrying about my son (and now sons), even more than usual. We've "started over" after taking a break from therapy, doctors, specialists and appointments overall. We're starting over with therapy and are getting fresh evaluations at Baylor over the next few weeks. We started over with a new geneticist and the genetics team at Children's in Dallas. And we started over with the tests. Although I feel somewhat guilty about it, I got to put on the blinders over the past 6 months, let my son be a kid and pretend that everything is fine. It's been a half year of sweet oblivion and I'm already missing it.

We made our first trip to the genetics department at Children's in the first few days of the new year. We spent several hours with counselors and doctors, all of them asking every question imaginable and going over every inch of our son with a fine toothed comb. At the end of the appointment, they came in with a few pages of information and told us they believed our son may have Sotos Syndrome. Of course we'd never heard of it and knew nothing about it. She gave us a few details, then told us that there is a blood test to confirm, but that it's terribly expensive and it was unsure if our insurance would cover it. One look between us and we knew we would be having that test regardless of the cost. We asked that they continue working with insurance, but we wanted the test, and now. An hour later, we were in the lab with our sweet boy, where we'd start over with needles and tests and pain. It's easy to forget how tough your kid is in all the ways you wished you didn't know. He watched the needle go in his arm, gave a little moan and looked at me for help, then just watched her draw blood without another sound. He's our little warrior.

After researching it on our own, we really felt that Sotos wasn't a fit for Torsten. There were so many things that just didn't fit - off the charts large head, extremely tall and high on weight charts, high birth weight and specific facial anomalies to name a few. His head has always been big, but never off the charts. And he's always been low on the charts for height and weight. He was an average sized baby at birth and the facial anomalies that identify SS kids weren't present with Torsten. However, I didn't want to be the parent in "denial", so I kept an open mind while waiting for the test results.

They said the results would take 4-6 weeks, but we got them in 2.5. They were negative. I called our parents, did a little happy dance and we celebrated with a bottle of wine. The counselor who called gave me the name of what they now believed Torsten had, so I made a note of it, told her I'd look into it that night and that I'd call her the next day if we decided we wanted to move forward with the next round of testing. For a few hours, we enjoyed the great news and celebrated that we got a negative test result.

Once we finished dinner and got the kids to bed, we began researching the next possibility, Pallister-Killian Syndrome (PKS). I sat on the couch with my computer while Ryan sat in the chair next to me on his. Barely a word was said for several hours while we both soaked up as much information about this chromosomal abnormality. Not long into our research, it was becoming apparent to us both that this diagnosis fit our son. It really fit our son. Several hours, plenty of tears and tissues later, we called it a night and decided that we would move forward with the next round of testing immediately.

Unfortunately, the test for PKS is not a simple blood test. A skin biopsy will be performed by the doctor herself this Thursday at Children's. They have to cut a small bit out of the back of his arm, send it off for tests and hopefully have results in 2 weeks. Until then, and hopefully after the results as well, our son is just Torsten. There are no other names or labels that apply at the moment and I've decided to enjoy that for as long as I can. The best news we could receive would be that he is just behind. He's had multiple surgeries and has always had a hard time catching up. Even if it's just me being in denial, there's a chance that I'll only able to deny it for a little while longer. Until further notice, I'd prefer to keep the blinders on and pretend that everything is fine. I hope the next time I'm writing, it's to say that everything IS fine and that Torsten is starting therapy and preschool soon. Until then, I won't quit hoping.

The good, the bad and the extremely dark and ugly

Hi friends and family,

If you've received an invitation from us over the last day or so about our blog, there is a good reason for it. Last week, while up with Dane at 3am, I received an email alerting us that someone had commented on one of the images of Torsten on our blog. I didn't recognize the name, but we originally kept the blog public so other parents could have access to the information we were teaching ourselves along the way, so that wasn't surprising. However, the comment seemed inappropriate, so I checked into the poster. The things I saw next, I've been wishing since that I could un-see.

The man who had found my sweet son's picture is a vile monster. He is a pedophile and child pornographer. His Google+ profile and blog are full of images of infant genitals, videos that I've been told contain the raping of babies (I can NOT watch) and comments about the terrible things he has done or was about to do with these children.

I immediately erased the comment, deleted the picture and changed our privacy settings on the blog to "private". I spent the rest of that night and most of the following day vomiting, crying and calling every agency I thought would care that this monster was out there hurting babies. I've spoken with the FBI (they seem ambivalent) and the Center for Missing and Exploited Children (they seem furious, in a good way). I'm planning to call the FBI back tomorrow because I just have to make them care about this. They told me that, unless there was a picture or video of the man "in the act" with a baby, there wasn't much they could do. Research is telling me otherwise and I hope that it's just the one agent who is confused about this.

I'll try to post an update both on this situation and on the boys soon. In general, they're both doing great, but things have changed a lot since the last post. I do promise more information soon and appreciate all of your concern!

Lots of love,

T & the boys

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!