Stem cells

If you have questions about stem cell treatment at Nutech Mediworld in India, please feel free to contact me at stephaniekrolick@gmail.com. We took my son Cash to Nutech twice for treatment. Cash is seven years old and he has a chromosomal rearrangement and pervasive developmental delays.

I recommend you read the early entries in the blog which discuss the trips and the results.

mostwithtoast.wordpress.com

The new blog is at mostwithtoast.wordpress.com. Please contact me at stephaniekrolick@gmail.com for the password. Really - don't feel bad - give me a holler :-)

 

Change

The Change for Cash blog started two years ago to share our plans for taking Cash to India for stem cell treatment and then continued in order to track the resulting progress. The first entries are all about why we decided to do this momentous thing and then the first few months tell how we accomplished it. The outpouring of support from our friends and community during that time forever changed my life. I will always remember and be grateful for the love and generosity that were shown to us - I think I saw some of the very best in human nature.

We chronicled Cash's first trip to India day by day. That first trip was strange and beautiful and filled with enormous anxiety as we waited to see if the stem cells would help him in any way. We saw progress during those two months, but it was two weeks after we got home that my five year old really started to walk on his own. Over the next nine months, I saw him progress faster than I ever had before, with more eye contact, more cognition, more communication. With that in mind, we decided to take him back to Nutech Mediworld and spent our second Christmas in a row in New Delhi, with the added pressure of letting CNN film our journey. In the seven months since then, I have written about how Cash continues to improve and about how while we cannot be sure that the improvement is due to stem cells, I personally believe that they have made a significant difference.

I have used the blog to share not only our experience with being stem cell pioneers, but also to write about the ups and downs of being a parent to a special needs kid. The IEP meetings, the illnesses, the thrill of even the smallest progress, the heartache of comparison, the joy of hanging around someone who is as close to the embodiment of pure love as exists in the world.

And on top of all the stem cell excitement, the two years of this blog have seen change in our lives beyond those changes involving Cash. There was a difficult divorce, the end of ten years at a great job, a move to South Carolina, eight intense months of school, the loss of Aunt Dianne in our daily lives after being with us since Cash's birth, and then most recently a new town, new home, new school, new job in Nashville.

Change for Cash and change for me isn't going to stop. That is the great, and scary, thing about life - you can't stay the same even if you want to. But I am stopping this particular blog and moving on to a new one. We are entering a new phase of our lives, it is time for a new blog. If you want to join us and see what changes are afoot, please go to mostwithtoast.wordpress.com. This new blog will be password protected, so please contact me if you want access. I mean it - I am truly happy to provide the password - just write to me at stephaniekrolick@gmail.com.

See you on the other side!

Appointments

Yesterday we took Cash to the eye doctor. He is getting new glasses with a stronger prescription. He is pretty farsighted and the doctor said that is unlikely to change much. Cash has had glasses on and off since he was about 6 months old, so this isn't too surprising.

And today I had a two hour parent-teacher conference with Ms. Finney. She is very nice and super competent. But I still don't enjoy those meetings. Maybe it is just too much of a reminder of how different Cash is. Or maybe it is that I sort of never really liked grade school - despite my straight A's - and it turns out I still don't like the rules and authority even as an adult. Cash apparently shares my feelings. It sounds like he is mostly well-behaved, but occasionally he sneaks off to be naughty and subversive :)


 

We really are home

We had a very nice, autumn-y Saturday. I spent the morning finishing unpacking from the move and setting up the apartment. There is always more to do, but I am happy with it so far. Cash's room is darling - I love to see our familiar friends like Johnny the Bear (from Grampa), the Sheep (from Alan, generously given during a Yankee Christmas exchange), and the horses (a picture from Gramma's room when she was little). Plus we have new friends, like the mouse painting I picked up in Orlando. Right now I hear music coming from the room - Twinkle Twinkle Little Star - Cash is in there playing on the synthesizer piano he got as a gift from AD's friend Terry.

Later we went shopping and bought lots of PJs. Some for Cash and some to be sent to Orlando for A Player To Be Named Later.

Cash got a haircut yesterday. I love it when his hair is short, I like to rub my cheek backwards along his head.

Thursday

Cash had a good day. He is trucking around all the time, listening, complaining, playing, initiating contact, cuddling, messing with things, and generally being a kid. This evening he saw me putting on a shower cap and commented "hat". Then while I was in the shower, he flushed the potty 5 times in a row (I can only hope nothing went down while I wasn't looking). He is in a bit of a Mommy phase - he does the sign alot, and he wants to hang out near me. I enjoy it, of course - but probably even more than most moms. I remember a time that I didn't know if I would ever see him express love for me. I worried I would always have to just know that he loved me, but I would never really feel it. But that's not how it has turned out. For years, I have known he is attached to me, and these days I feel gratified by all the "Mommy, Mommy, Mommy" signs and the way he seeks me out, makes eye contact, and snuggles. Tonight he fell asleep with his head on me as he often does, and last weekend he spontaneously gave me a kiss. I was still asleep and he leaned over and bonked me with his head (which is a Cash-style kiss). I love that he loves me. And I am grateful he expresses it.

Cash had a consultation with a specialist today about his leg braces. He had a short break from them this summer, but he will start wearing them a couple hours a day again starting tomorrow. He is not going to be happy about that.

Plus he is already banged up. He fell last weekend and skinned his knees (thank you Chris for the new band-aid glue stuff), and then fell at school on Tuesday and cut his chin. He is so adventurous and fearless, and of course we want to encourage him to try new things. But I hate it when he gets hurt. Every bit of him is precious to me, from his little toenail to his eyebrows.

I watched 7 hours of implant videos today. The procedures were happening live while we were conferenced in. Nice opportunity to learn while eating lunch and not having to wear lead.

Peaceful (relatively anyway)

I have been struggling a bit with this blog lately. It started as a way to communicate and track Cash's progress during and after India. I think it served that purpose well, and I have certainly made it clear that I think the stem cells did very nice things for Cash. He walked after the first trip, at age 5 1/2, and he stopped needing growth hormone after the second trip. Plus I firmly believe both trips increased his communication skills and improved his cognition. I see the results every day.

But we are done with stem cells, for now at least. And Cash's day to day life these days is pretty calm. He goes to school, he does new things slowly but regularly, and he is generally healthy. Being his mom isn't just like being anybody's mom - there are still plenty of issues unique to us and/or particular to having a special needs kid (like right now I'm fighting to get Medicaid for Cash, and sometimes sadness about his condition hits me like a tank), but in a day-to-day sense, things with Cash are steady.

On the other hand, our lives in a bigger sense have been full of adventure for the last year. And I keep wanting to write about that - about the move, the new job, the trials of co-parenting, how things are with my family - but that news isn't per se about Cash, and it is probably not appropriate for a public-access blog :-) So I am thinking about retiring this space...

In the meantime, right now at this moment Cash is playing Hey Jude on his iPad (he thinks it is Hey You which I know because he always points to himself during the song) and I am getting ready to put him to bed. This morning, I woke him, and Mom and I got him ready for school. He ate Cheerios. At 7:45, he got on the bus, I went to work, and Mom went to get her new driver's license. He got home at 3:30 - his teacher reported that he has made friends with Brandon, another kid in his class, and that they laugh all day long - and I got home at 4:30. We played and goofed off, had dinner, packed his lunch, bathed, and had meds. I chased him around for a bit trying to get a good picture to post. Tomorrow we will do it again.

 

Today

Today:

AD left to go back to Orlando.

Cash returned to school. He is looking perkier.

I am in process of booking flights for Cash to see his dad in October.

I have a terrible terrible sore throat.

 

More on being sick

So the upshot of the last week is that Cash has an ear infection. He had a cold all last week - it was aggravating but not scary. By Friday evening, though, he seemed a little off, so I took him to an after-hours clinic. The doctor declared him A-ok, but sent us home with a prescription for antibiotics in case we needed it over the weekend. By Sunday, I decided Cash needed the antibiotics, but the Rx couldn't be filled and a different doctor prescribed Albuterol, thinking it sounded like he had reactive airway instead of pneumonia. That seemed to help for a day, and his usual pediatrician looked at him on Monday and confirmed that there was no pneumonia. On Tuesday, he suddenly spiked a high fever and was super listless. Back to the doctor, who diagnosed an ear infection. 36 hours later, Cash finally looks much better.

I think that is all kind of boring, except maybe it provides an insight into why it is stressful for me when Cash is sick. It is a constant game of watching and waiting to see if the little cold turns into something more serious. There is no point in taking him to the doctor too early, because they send him home with the usual line about "it's just a virus", but yet you don't want to miss the moment when the little cold takes a bad turn. It is exhausting.

Plus his illnesses always take me back to when he was little and he would get sooooo sick and it would be very frightening. In fact, just today I was remembering the time that Josh, Cash, and I were crowded onto a hospital bed at 3am in the ER waiting for the doctor.

Anyhoo, he is getting better now. Poor AD was stuck with a sick Cash for her whole vacation.

Prince and the pea

Cash is now sleeping in his own bed through the night. The secret turned out to be buying him an expensive bed of his own.

Cash slept alone when he was very little, but then got grumpy about the crib and wanted to be with Josh and me. We worked out a routine where he fell asleep with us, and then we moved him to his own bed - which at the time was a cute blue Ikea toddler number with a huge green leaf over it. Sometimes early in the morning, he would wake up and crawl back to us. This routine went on more or less for years, including after Josh left. When we moved to Greenville, he had his own bed, but it was in my room, and it was cheap and flimsy. He abandoned it about half way through our sojourn in Greenville and decided he was supposed to sleep with me. That continued this summer because we were traveling alot, so he really got used to sleeping with me. I figured it would be impossible to get him to go back to sleeping alone. Nope - I bought him a real bed, and voila - there he is all night. So far anyway...

He stayed home from school today. Sniffles. But the doctor said it is not pneumonia, whew.

Harpooned

A whale is only harpooned when he comes up to spout, they say.

I got harpooned after spouting last week.

I wrote about how healthy Cash has been this year, and of course he proceeded to get sick this weekend. His cold has turned ugly, but I'm not yet clear about whether it is just an agressive cold, a touch of pneumonia, or reactive airway. We will take him to the doctor tomorrow. It is a bummer since Aunt Dianne is here, and Cash is pretty listless and not alot of fun.

 

Grateful

Cash has a cold. That is never fun, but at least it isn't as horrible as it used to be. I want to take a moment to appreciate how far we have come - when Cash was little, EVERY cold turned into pneumonia. Either he would have a reactive airway disorder when he came in contact with a virus, or he would fail to move the junk in his lungs and it would get infected. We would try to get him to cough, we would thump his back (later we got a vibrating vest that they use on CF kids), but more often that not, we ended up at the doctor's office getting x-rays. Before we recognized the signs, sometimes that meant being in the ER at 3:00am. When he was very small, they used a machine called a Pigg-O-Stat to hold him still during the x-ray, which I admit I found amusing, though Cash did not. Then they would diagnose pneumonia and we would go home on steroids, antibiotics, and bottled oxygen. Honestly, he got pneumonia and/or reactive airway so often we LIVED WITH an oxygen machine as well as a prescription of steroids in the fridge.

And now a cold is usually just a cold. He hasn't had pneumonia since last December when he was on an airplane for 24 hours. I feel so grateful that we keep moving forward. Someday the diapers will be in the past, right?!

I am about to go email Cash's dad regarding a new parenting plan. Our original plan applied to the time when we were both in Aspen, and the last one was only in effect through this summer. Now that we are settled in Nashville, I hope we can come to a more permanent agreement.

Fun weekend

We had a great weekend with Valerie and Chris. We went to the state fair on Saturday - I think Cash liked the rabbits best. We did not take a stroller, so he walked alot but we had to carry him quite a bit too. We are in an awkward stage with walking. I like him to do it himself so that he gets stronger, but he cannot go too far without tiring or getting bored. I'm over having him ride in a stroller - I think he is too old - but I acknowledge that sometimes one would be helpful.

I also went out in Nashville on Saturday night with Val and Chris. It was so much fun and it made me appreciate this town even more. The scene downtown is fabulous - so many people, so much great music. And then we went to the Titans-Patriots football game on Sunday. I went to the dark side and rooted for the Pats with Chris.

And now Aunt Dianne arrives tomorrow! There is more fun to be had. Opryland, I think!

Cash has a little cold. Runny nose and generally snarfly. He also has a little scratch on his face. It figures that I found out today that tomorrow is school picture day. Of course.

Who

A brief description of Cash never describes him. That's true for all of us, but especially so for him. When I am forced to say only a few words about him, I usually say he is special needs. If someone asks for more detail, I mention that he has pervasive developmental delays - both cognitive and physical, is nonverbal, and is semi-autistic (depending on who you ask). And then I always add that he is delightful. But "delightful" probably sounds like a contradiction to anyone who has just heard the first description, even though delightful only begins to touch on the complexities of his personality and his way of moving through life. At 7 years old, there is no doubt that my little kid is a pretty severely disabled person who is unlikely to ever be "normal" - but I hate even writing that word "disabled" - what I wanted to write was that he is a pretty severely challenged little guy. Challenges vs. disability, you know?

And there is so much more to him than those challenges. A few minutes ago, Mom and I were looking at a picture of him from when he was 1, and there he was - his little personality already shining through. He is charming in the most peculiar way - he is not a quick smiler, he has difficulty with eye contact, he is not a hugger - and yet - and yet - he is utterly charming. Maybe it is just because I am his mother and I am absolutely charmed by him, but I think his smile once it comes is like a reward, his eye contact when you get it is like connecting with his soul, and his hugs, even his touches, are like grace.

 

New life

Yesterday I worked my first full day at the hospital. I am still in training (and will be for a very long time - you will be reassured to know that nobody is letting me program your pacemaker until I have been trained to death), and so I shadowed my mentor all day. It was great - lots of cases, lots of learning. Plus it had the side benefit of wearing scrubs, which are very forgiving if you have gained a few pounds over the last few months...

I came home after work to a house full of boxes. Our movers delivered all our stuff, which had been in storage in Atlanta for the last few weeks. It is nice to have access to all our things, but until I have time to unpack and organize, it is a mess. And I do not like mess. It drives me crazy. But I am trying to tackle small bits at a time and I know it will come together. Eventually.

Cash got his hair cut today. He is doing fine - seems comfortable in the new house, fine with school, generally healthy and happy.

New home

We pretty much spent all Labor Day weekend moving in to our new apartment and buying things to go in it. I find it stressful to make purchasing decisions, so it wasn't as fun as it sounds. Our movers should arrive later this week, and some of the furniture will be delivered next week. In the meantime, it is quiet around here.

Cash is doing well. Right now he is watching Daniel Tame Tiger on PBS Kids on his iPad. I don't know what we did before we got his iPad - he is endlessly entertained by it. Plus I like the way it sneakily helps him learn. I have it loaded with apps about the alphabet and colors.

He has teeth again - no more baby vampire. I was worried about how those big teeth would fit in his little mouth, but there they are.

Aunt Valerie is coming to visit on Friday, and Aunt Dianne will be here in 10 days.

Eventful week

So let's see. This week Cash had an IEP meeting, Mom had a birthday, I took the IBHRE certification test, and tomorrow we move.

The IEP went well. Cash's team at his new school seems very smart and kind. Many things are different from what we were used to both in Aspen and in Greenville, but I think mostly in good ways. His teacher is energetic and firm and realistic. She won me over when she told me that she had asked Cash a relatively complicated question and after he answered correctly, she told him he wouldn't be getting away with playing dumb with her. I told them I think Cash knows so much more than he shares, and they agreed that the challenge is getting it out of him.

We celebrated Mom's bday with Indian food. Alot has changed in a year! A year ago we were driving to Greenville...

My certification test today was brutal. Five loooooong hours of computer-based testing, and yet I really needed another hour if I was going to do well. I have given myself permission not to pass the test this year, so no matter what, it was good experience. But boy, it really is a crazy hard exam. It was exhausting.

And tomorrow we move from our little hotel room (we have been here 6 weeks!) to our new apartment. It is just down the road and up the hill. I think we will be spending most of Labor Day weekend unpacking and doing furniture shopping - which should be amusing.

The little guy with the fuzzy head is doing well. I like him and he seems to like me.

Beep beep

This is my new favorite video!

Disappointed

Without going into any details, I will simply say that I am consulting with a family practice attorney next week. The situation with Cash's dad needs addressing.

It makes me sad.

Baby back ribs

Today was Cash's third day at his new school. We are still living in a motel until our new apartment lease starts in a week (which is an adventure unto itself). The bus picks Cash up right at the entrance of the motel. On the first day, Cash seemed surprised to see a different bus driver and a new teacher - it is funny, Cash doesn't really react strongly to situations like that, but in this case he was hurrying towards the bus, and then stopped when he saw the driver. It's not like his expression changed per se, more that he suddenly got quiet.Then I met him at school to introduce him to his teacher, and it was the same sort of thing - he was just very quiet and watchful. His class is K-4, with 8 kids, 7 of whom are boys. His teacher is strict, I think, but warm and communicative. That should work well for Cash. She wrote in yesterday's daily report that he has already acquired the nickname "The Bottomless Pit" - that kid can eat. And yet he is a tiny little thing - wearing size 5 though he just turned 7. We will check in with an endocrinologist in a few months.

My trip to Aspen to pick up Cash went well, except for puking on the plane ride like a freaking six-year old (I hate motion sickness). Aspen was its usual beautiful self, green and mountain-y. I had been wanting to hike for the whole last year, but my tummy problems continued for the whole weekend and I barely made it up one hill. It was later pointed out to me that my stomach pains may have been due to nerves, and in fact, the transfer between Cash's father and me was rough. But I have that little kid back in my clutches, and that is all that matters.

Loved seeing my friends in Aspen - I miss them all so much. And they were very kind to give me time while I was there and to not make too much fun of me for not being able to hike. I had a nice little revelation while I was there: I am actually HAPPY. For the moment, anyway. I feel like I should say it and enjoy it, because I am old enough to know that more challenges will come - maybe even later today. But for the moment, with my new job and my new town and my kid back where he belongs, I am content.