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.

Quiet times

Not much happening here - Cash is still with his dad in Colorado, and I am doing HR-type things like mad for work. All day, every day doing modules on the computer. But I love it. I am so proud to work for my company and to be doing what I am passionate about.

I am off to Aspen this weekend to pick Cash up.

School 2012

I had a pre-IEP meeting with Cash's school today. Everyone was very nice! It makes me hopeful that we will have a good experience with the school system here. He will be in a contained Special Ed classroom - which I find difficult, but I know it is right. I truly feel that the move towards inclusion and the least restrictive environment is beneficial both for the "special needs" kids and the "normal" kids, and I wish Cash could be in a regular classroom. But I do know that it wouldn't really work well for him - he needs more attention and a regular, structured class would be boring for him. He is more likely to learn in a classroom where the whole thing is tailored to his level. So we have to do the Special Ed thing. On the up side, his teacher - Ms. Finney - has alot of experience and seems very kind and involved. His classroom is full of interesting things, like a swing and a "steamroller" (some kind of deep pressure stimulation device!). I am really feeling hopeful that this will be an environment where he can thrive.

I am LOVING Nashville, BTW. More every day!

Skype

I skyped with Cash on Friday. It was great, but it is somewhat frustrating to skype with him. He doesn't talk of course, and he likes to push the computer buttons which sometimes disconnects the call. Plus his dad's computer doesn't have a microphone so Cash has to wear headphones, which he generally won't do. So that means we mostly just look at each other - well, actually I talk the whole time, cause that's who I am and cause he MIGHT hear me - but that is NOT the same as a good cuddle.

I am using my time to myself to study and work out, and then work out and study some more. I also sleep in, b/c there is no small boy to wake me up.

Redacted

My first day of work was wonderful and I am loving my new job. I have spent most of the week studying in preparation for a certification exam at the end of the month. It is so nice to be employed.

I miss the little guy who usually runs around my house making trouble.

...I just wrote a long post about the current situation with co-parenting and then I deleted it. Growl. Self-editing.

Ooh, Cash is available to Skype with :-)

New beginning

Today is the first day of my new job. I have been hired as an Associate Clinical Specialist at Medtronic - essentially I will be representing the company at cardiac device implants and follow-up checks. Training is expected to last months, if not a year, but eventually I will assist in implanting pacemakers and ICDs in the cath lab as well as checking patients with devices in their doctors' offices. I am super happy and excited and nervous.

Plus I am loving Nashville. We are actually living about 20 minutes south of Nashville in the town of Franklin. It is utterly charming and convenient, with a quaint downtown, lots of good food (the famous meat + 3!), and lots of easy shopping. It has been hot, but I am still enjoying that after over 10 years of snow.

Speaking of, Cash left yesterday with his dad for two weeks in Aspen. I am sure they will both have a wonderful time, but I miss him already. 

You say it's your birthday

Today I celebrate 7 years of having Cash in my life.

Birthday eve

Tomorrow is Cash's birthday. On Tuesday Cash flies with his dad to Aspen. On Wednesday I start my new job. I don't think I have said the words "I'm bored" in months.

Cash has started sticking his hand down his pants. Now I will not begrudge a small boy the opportunity to play with what he has got, but we do have to work on when it is appropriate. Plus for a day or two, it was pretty bad and he seemed to be itchy. So I took him to his new pediatrician and she declared he had a few chigger bites. Chiggers?! It sounds horrible. But apparently it is pretty common and there is not much you can do but put some hydrocortisone on the area to salve the itchiness. I must say that after years of Cash's every sickness being pneumonia, it is interesting that he now seems to get typical kids' ailments. Not fun per se, but certainly a nice change.

I hate that Cash is going to be gone for 3 weeks. Argh. 

Important day

It is Himself's 7th birthday next Monday! I am so grateful to have him in my life. It has been an amazing, eventful seven years - full of heartache and struggle and triumph and endless, endless love. He is blessing and a lesson, a reward and a guide. He is what gives my life form and meaning. I celebrate his soft belly skin, his fuzzy head, his joyful smile, his stubborn, mischevious spirit. I remember growing him - the quiet moments before his birth where the two of us shared everything - and I glory in his current incarnation of active little boy.

7 years! Woooo!

Moving forwards by moving backwards

Kiddo walked backwards today! I was at the computer and I looked up to see Cash giving me an impish smile as he moved his feet in itty-bitty backwards steps. It was adorable. And he was so pleased with himself.

Really, as I look back on it, he has been hot recently. A bunch of new signs - balloon, garden, butterfly, doctor (as of yesterday) - more spontaneous commenting on his surroudings, and greatly improved walking. Not only solid walking without braces, but enough control to go in reverse. Plus, he is using his iPad to work on colors, letters, and numbers. It is hard to tell exactly what he knows, because he isn't always motivated to give the "right" answer, but it looks like he is taking it all in. The "Meet the Colors" app is my favorite - the colors are all associated with cute little dancing powder puffs.

Just now, we turned his iPad on and he spontaneously signed "apple" when he saw the Apple insignia.

I still think the stem cells are making a difference.

I am feeding him M&M's as I type. He keeps walking away and then coming back but stopping halfway to take a few deliberate steps backwards before proceeding. It looks like dancing and it is hilariously cute.

Breathing clearly

We visited our new pediatrician today for a well-child checkup and a general get-to-know-ya. The doctor was exceptionally nice. Cash is now 46 lbs and 42 inches tall, which is quite little for a 7 year old, but that's who he is. The exciting news is that we are ceasing all asthma maintenance meds - Cash hasn't had an asthma-type event in ages and really hasn't been sick much at all for the last year since we left Aspen. For one, he is older and stronger, and secondly, he breathes better at a lower altitude. We will continue to keep a rescue inhaler on hand and we will continue to do a few puffs of his maintenance inhaler when he is in Aspen.

So! No more growth hormone and no more asthma meds!

Also, for the moment, no more leg braces. For the summer, we aren't using the braces in order to see how Cash's muscles strengthen without them. We may go back to the braces (or a new version) later this fall.

We are enjoying Nashville. Things feel a mite unsettled since we are still in transition, but the hills are beautiful and the people are notably kind.

Naughty

Cash was naughty top to bottom today. Right now he is hopping around on the bed beside me wide awake at 10:30pm. And this day started when he woke me at 7:00am. In between he threw about 5 temper tantrums, whined for long stretches of time, complained about walking, complained about riding in the car, slid down in his seat repeatedly during lunch, sat down in the middle of the grocery store parking lot, chewed on his glasses, refused to hold anyone's hand while walking, rode the elevator by himself, tried to use the computer at the school office, arched his back and threw a fit at being strapped into his carseat, etc etc. It was quite a demonstration of willfulness and discontent with the reigning authority (meaning me). After his complacent babyhood, I still enjoy it when Cash asserts himself, but I will admit today was long and it makes me sad when he gets frustrated.

We have had three busy busy days. We have now signed an apartment lease, found somewhere to live until the lease kicks in, registered the car, mostly registered Cash for school, made an appointment with a pediatrician to get Cash a physical, visited the Department of Health to verify Cash's vaccinations, started the Medicaid process, and checked in at the bank. Lots of stuff to do, but we are making progress. We are helped in our tasks by our diligent investigation of the local frozen yogurt places - though Cash doesn't show alot of enthusiasm for ice cream, which I find amazing. Who doesn't like ice cream?! Today I got him a cup of fruit instead - and he PREFERRED it. Weird little kid.

Do-ing

This week is a mess of apartment hunting, school researching, car registering, Medicaid applying, and various other -ings. There are so many decisions to make. One is done - we are living in the Franklin area (south of Nashville proper) where the schools are supposed to be excellent. We stopped by the district office today and to their credit, they took Cash in stride. As soon as we sign a lease, I will go and enroll him.

He was pretty hilarious today. We did alot of driving around, and at some point he got bored and mad and proceeded to pitch a fit. He was holding onto a rail in an elevator and as he squawked and wiggled, both his feet left the ground. I think it is the first time he has actually jumped under his own power. He looked surprised. And proceeded to try it again.

He is getting his new front teeth. No more baby vampire, instead he is all toothiness. 

It's official

We are moving to Nashville :-)

I am SO happy.

Gardens

Today Josh bought me out of our Aspen house. I've kept my name on the mortgage for the last year until he could refinance and now it is done. I know it is for the best, and I am glad he kept the house, but it made me sad.

Cash is enjoying our time in Orlando. He and Aunt Dianne swim almost every day, and he goofs off a bit with Beezus and the cats. He dislikes the heat, but he is breathing well and he runs around Heather and Gib's house like he owns it. There is one small step leading from the dining room to the Florida room and Cash always pauses near it and asks for help rather than tumbling down it like he might have done a year ago.

Cash has a new word! He busted out "garden" the other day out of the blue. We were trying teach him "alligator" and somehow we said the word garden and poof, there it was. He is a delightful little mystery, listening all the time and then whipping out new words when we least expect it.

Throw one back for me

We are definitely on vacation - very busy having fun. Yesterday the whole gang of us went to Gatorland where we ogled reptiles and ate sugar for hours. It was delightful. Cash did well for the most part, though he dislikes being hot. He walked a bit, then he sat in a rented stroller and accepted food bribes. Eventually he asked for his iPad. Really, if you asked him, he would always prefer to stay home and play with his toys - I'm not sure how I got such an indoors-y kid! I guess it comes from his difficulties with walking, but it takes an effort of will and patience to do an outdoors activity. He actually walks very well these days, but he likes to go where HE wants to go, and absolutely hates being told where to go. He likes to wander and visit and dawdle, and he hates going from Point A to Point B. It is challenging. But I forge on with the hope that some day he will appreciate an outing.

Today we went for a drive and ate at a German restaurant in Sanford. Cash gobbled up sausage and knocked down some German beer. Literally, he KNOCKED down a whole row of bottled beer in a refrigerated case. Luckily none of it broke. The salesperson apologized to us instead of the other way around and gave Cash a cookie for his trouble.

Home of the The Mouse

We drove from Nashville to Orlando on Monday and are now spending a week with Heather, Gib, and AD. Heather and Gib's 3-bedroom house now holds 4 adults, 1 kid, 2 cats, and 1 dog. So far, it's amazingly harmonious. Beezus (the dog) looks a little surprised by Cash, but she has accepted him calmly enough. She tried to play with him once, which I appreciated as an effort on her end, but since playing involved mild chasing and pretend nips, she was told to stop. I felt bad for her. Cash thinks that both she and the cats are pretty funny. He occasionally points to them and laughs. But he doesn't often touch them, so they don't seem to mind him as a houseguest.

So nice to see AD! We missed her for the last ... what, it's only been 2 weeks?! But we are so used to seeing her every day that it has been a big change. Her new apartment is adorable and she is settling in well. Of course we don't expect to go long without visiting with her - she and Cash both need it, they are bonded like Super Glue.

Float like a butterfly, sting like a bee

Cash has a new sign! We were looking at a story on the iPad yesterday and Cash said "butterfly" without being prompted. I have been working on butterfly for ages, but in this case I didn't sign it, he did it on his own spontaneously. He is a funny little kid.

We continue to see nice progress since our last trip to India. It is not as exciting as after the first trip (the walking, obviously), but there have been some great advancements. For me, the biggest is that he is more engaged. He listens all the time and he wants to be a part of things. His eye contact is so much better than it was a year ago. He initiates touching us! (I got him to smack Gramma on the butt the other day. It was very amusing to me.) It is hard to quantify those changes for outside observers, especially since Cash is still very much a person who only shows what he knows when he wants to. Plus, physically, he is now walking around without braces. It is an awkward, loping gait, but no braces is a big improvement. He looks adorable in his bermudas with his skinny legs.

Not going to the leper's colony on Molokai after all

Boy, am I delinquent in doing an update. The truth is that there is quite a bit going on with me, but Cash is pretty stable. He came home from Aspen sick as a dog with Hand, Foot and Mouth Disease, but he looks good now. For the first few days, he kept getting worse and worse - it started with a few open sores when he got off the airplane, and then progressed to open sores all around his mouth and bumps all over his hands and legs. It was scary-looking. After a couple days, we took him to a urgent care doctor who said the H,F, and M virus would run its course, but in the meantime, he had gotten a secondary bacterial infection. The doctor prescribed an ointment, which in the miracle way of ointments, started clearing things up within 6 hours.

Otherwise, Cash is spunky and sparky. He needs a haircut, and his two front teeth are growing in. The other day he and I were watching two little boys play near us and he smiled and signed "friends". He seems happy and engaged.

We are in Nashville this weekend....

Leper-d

Cash came home from his visit with his dad in Aspen with hand, foot, and mouth disease. He looks like a leper. Seriously. Sores and spots and bumps all over his body, and particularly badly on his face. He looked pitiful when I picked him up, but I just thought he had a nasty cold. The next day I found out it was this virus. Apparently it is going around Aspen and there is nothing you can do about it except wait for it to get better. Poor little kid.

But I am SOOOOO glad he is home with me!! I am way happier than I have been in weeks. I just like his nearness, his sweet little presence. I like the soft pelt of his head, the point of his eyebrows, the place under his shoulder blades where his angel wings are hidden.

24 hour countdown

Freakin' craziness here. Movers, housecleaners, a zillion last minute things to do. I am sad and panicky. Also excited and ready to go.

I miss Cash SO much. The last few nights I've had bad dreams about losing him. Thank goodness he is coming home tomorrow.

Ch-ch-ch-changes

I can't wait until THAT KID comes home!! I miss him a ton. He flies into Atlanta on Saturday...and then we are staying in Atlanta! Because, yes - we are moving there. I am spending this week packing all of our stuff. Alot of our things are still in boxes from our last move here to Greenville in September, but there is still plenty to do. It is a little crazy. We will drive out of Greenville on Saturday, pick up Cash from his dad, and start living in Atlanta.

The ATL!  

Waiting and sleeping

I use this space to concentrate on Cash, but a quick note to my future self about the rest of my life right now: everything is just SO unsettled. It is a time of crazy transition - of change, change, and more change. I knew about 2 years ago that we were entering a period of change, and I knew it would last awhile. But knowing something and living it can be very different experiences. Mostly I think I have rolled with all the changes (including the divorce, the trips to India for stem cell treatments and Cash's results, moving across the country, going back to school, and now moving again and getting a new job), but occasionally it has been overwhelming. Right now, we are in a lull, but it is a weird lull - nothing is happening at the moment, but everything is about to happen. Today, I woke up feeling guilty about sleeping in - and then I remembered that there was no sleeping in two weeks ago and there won't be any again in another two weeks. So I went back to sleep some more.

The sweetest face

Just got to talk to Cash on Skype. He looks PERFECT. So beautiful, so clever, so grown-up. He was very attentive to me - he smiled when he saw me and signed "love" and "mommy" when I asked him to. I sang to him and I took the computer around to all his favorite toys so he could say hi and I bounced on the bed just like he does himself. He looked so beautiful...

We are halfway through his 3 weeks with Josh. Mom and I went to Charleston last weekend, just for something to do, which was lovely. It was especially lovely to visit without Cash - he doesn't enjoy sightseeing, he is still too little to walk long distances, and I don't like sticking him in the stroller for long periods. So the trip was a good thing to do without him; however, it is only something to do to keep me occupied until he comes back. It is weird having him gone - in some ways, it is awesome - I sleep until 10:00, I read, I exercise - but mostly it is awful - he is the whole point of my life. All of my much cherished free moments are only precious because of the time spent with him. When all my time is free, like it is right now, I miss the form and meaning he gives to my life. I am so grateful for his existence and the meaning he gives to my existence.

That really sounds cheesy. And believe me, there are evenings when Cash is home, when I am running around like a maniac trying to get things done, that I would love an hour to myself. But I am self aware enough to know that I prefer stealing an hour here and there from my time with Cash to endless hours without him. 

Still has those eyes

I miss my little kid.

Warning, poo ahead

Last night I suddenly missed Cash intensely. I missed his warm little sleeping body and his fuzzy head and his sweet face.

Per his dad in Aspen, Cash is apparently not feeling very well. He has a low grade fever with a stuffy nose and low appetite. Plus he was constipated for the first 5 days he was there. POO ALERT: don't read any further if discussions of poo bother you. Like many special needs kids, including those with low tone and/or autism, Cash has some pottying issues. He is frequently (very frequently) constipated and he often holds it until he can't hold it any more and it all comes whooshing out. The situation has gotten better recently - he usually goes every few days on his own, without laxative. But we still have to use the Miralax occasionally, and sometimes like every kid it goes the other way and we have to get out the Imodium. Sometimes we have to change 8 diapers in one day, sometimes none, other times one scary huge one. You can see why I have been so motivated to get him potty trained! But I don't think he is quite ready for that. In the meantime, we continue to ensure he eats a healthy, balanced diet, and we keep an eye on whether he needs a little extra help.

And so in the meanwhile, it sounds like Cash's dad and his girlfriend had a poo-filled day yesterday after the 5 days of constipation. Eek.

Transfer

Ohhhhhh, it was a hard custody transfer.

We had to wake up at 3am to drive to Atlanta on Saturday morning, then fly 3 hours to Denver. Cash stayed awake the whole flight - thank goodness for the iPad - and then we got a little wheelchair assistance to the exit. Then while I was on the phone telling Josh where we were, Cash decided to climb off the bench by himself and fell on his chinny-chin-chin. So when Josh walks up - with his new girlfriend, who he had NOT TOLD ME WAS COMING - Cash is whimpering and bleeding. It was really a lovely moment. Cash was fine - he immediately asked his father to drive and said bye to me. I tried to handle the situation with grace despite feeling smacked and blindsided and rushed. The girlfriend seems nice, and I am actually glad to have met the person who will be spending so much time with my kiddo. But a little notice would have been appreciated.

I decided to write about that very difficult moment here on the blog because it's actually a significant part of being Cash's mom. Being Cash's mom means I will always have to co-parent with his dad. I don't know how much Cash's disabilities contributed to the end of our marriage - my gut says it was a factor, but not the biggest one - but I do know we both love Cash very much, and so we struggle on, trying to be good parents to our favorite little kid.

Gulp

One of Cash's new things is opening the refrigerator. Sometimes he pulls hard enough that he lands on his butt. Other times, he opens the door, looks around, grabs his sippy, and drinks while standing in the open door. It is very amusing and seems like such a "guy" thing.

We said goodbye to Katy The Physical Therapist today. Cash is very fond of her - he hugs her spontaneously. I am sad that she will no longer be working with him.

My job is stuck in HR and I am scared it won't go through. Eek.

We leave at 4am to drive to Atlanta tomorrow. Then I have to say goodbye to Cash for three whole weeks. I am going to miss his fuzzy little head.

Endings and beginnings

It has been a crazy week. I have tentatively accepted a job! I am still waiting for the final offer from HR, but I am excited and think it will be a great move for Cash and me. Location to be announced next week....

On Saturday, I am taking Cash to Denver. He is spending 3 weeks with his dad. I will miss him, but I am hoping to accomplish our move while he is gone. His father has hired a "nanny" for him.

Tomorrow is Cash's last day of school in Greenville. And he has had his final sessions with Katy (PT), Leni (OT), and Alison (Speech) this week. It's difficult to leave them all - they have been wonderful. Greenville overall has been wonderful. Today we cried while saying good-bye to the lovely girl who cuts Cash's hair and soon I have to say good-bye to all the friends I have made here. I never thought I would find it so hard to leave a place after only 9 months - but it is a special place.

Ooh, Cash used the potty today! I caught him making a "poo face" and whisked him to the toilet where he proceeded to go. We partied in celebration.

Latest on his progress

Cash is doing great, CNN excitement aside. I've been working on colors and numbers with him and he is showing interest. He will do the signs for red, blue, yellow, and green if he is in the mood, but they are not well articulated. And then last week he tried to imitate me counting on my fingers. He really is trying, but it is harder to do than you might imagine. Think about it: to say "one", you have to use your thumb to hold down three fingers, then to say "two" you have to move your thumb over just a bit and lift a single finger away from the others. It is small movements like that which can be challenging for Cash. But he is definitely trying.

Right now he is goofing off on his iPad, watching PBS Kids. I added an app for potty-training that he seems to like - it is especially designed for autistic kids and shows a Cash-like avatar using the potty. Cash likes to watch it. In fact, there has been some progress on the potty-training front -
he is pretty consistently going first thing in the morning. He will even hold it a bit if I am late getting him there. And he has discovered how to flush. The poor potty is subject to alot of flushing.

Otherwise, things here are a little crazy. Aunt Dianne is home, back from visiting Heather in Florida, and getting ready to move to Orlando. I am considering my next steps in the job search process, which involves a lot of careful thought and research, AND hopefully an imminent move. Mom is preparing herself for that upcoming move. And Cash motors along, happily himself and working on his own little things.

Woooo!!!

"Life is either a daring adventure or nothing." - Helen Keller

Everyday miracles

Just like I planned, I did not watch the CNN program. But I have gotten lots and lots of nice feedback from friends and strangers who have been very kind and encouraging. Apparently, Cash was cute and my love for him came through.

I did the show because I wanted to explain why we decided to go to India for stem cells and what I think Cash got out of it (essentially a faster rate of progress, including walking and improved engagement and communication). CNN called the show "Selling a Miracle" - I would like to note that "miracle" was never a word we used - we weren't looking for a miracle, we were looking for a little improvement. And we got it.

I continue to feel that Cash takes me places I never expected to go, both physically and emotionally. This CNN thing has been a wild, thought-provoking ride - but really, Cash's whole life has been a wild, thought-provoking ride. I have felt the deepest love, and I have felt the deepest sadness and despair. I have seen the best in people - their best generosity and kindness and faith. I have endured insurance companies and bureaucracy and many, many sleepness nights. I have found that I am a stronger and more interesting person than I ever thought I was - I am capable of endless love, not just for Cash, but for everyone, and I am capable of making the hard decision. He is making me into the person I want to be, and it is a bumpy road, a roller coaster even. Hospitals, IEPs, India, CNN, growth hormone, divorce, 7 years of dirty diapers, fundraisers, first steps, learning sign language - through it all, I try to put my hands in air and say "Woo!"

On the other hand, that is not to say that some days I do not put my head in my hands and say "Boo."

Bring it on

Tonight is the CNN broadcast. I feel calm. I don't plan to watch it. Three reasons: 1) I am pretty self-critical and would spend the whole time thinking how stupid I look, 2) I heard a bit of the preview and they described Cash as "incurable" - what?! I can't watch that and have those kind of words and pictures of Cash in my head, and 3) I will be annoyed if they are really harsh with Dr. Geeta. So, I am going to let everyone else watch it and I think I will eat a few cookies in the other room. Mmmm, cookies.

I have already had a few people contact me about the broadcast through Facebook or the blog. A woman named Rochelle wrote a lovely, pertinent comment on an earlier post below - check it out. And others are looking for information about Cash's diagnosis and our experience in India. I think it is my job to be public and honest about our experience, so I guess I'm ready for whatever this brings. I know that every story about a child or a parent in pain breaks my heart, but I also know that I have an understanding about what it is to have a special need kid and I can share that. I know what it is to be hopeless and what it is to take that dangerous leap into hope. I know that love always wins and that being a force for love in the world is the only thing that really matters.

So I face my little 15 minutes of semi-fame with equinimity.

If you have found this blog after seeing the CNN piece, I might recommend that you read some of the earliest posts about our decision to go to India and what happened there.

Mom=Travel Agent

Yikes, I need to write about the CNN broadcast (it's this Sunday!) and Cash's upcoming trip to see his dad. But it is late (because I have spent 3 hours booking Cash's flights to see Josh), and I am tired, so it will have to wait until tomorrow -

:-)

That kid

My reward, continued

Yesterday I said that I never thought I would write what I did. Two reasons for that:

One, writing about God was unimaginable a few years ago. I had lost my faith somewhere between Josh and Cash. Josh (when I was with him, anyway) was pretty agnostic, and after Cash was born, I couldn't imagine any God I believed in permitting the kind of pain and horribleness that I saw in the world. It's been a long journey back towards faith, but I admit I'm enjoying it. I am still figuring out what I believe, but that is an interesting place to be. It is important to note that this journey started with Cash's trip to India - seeing our community rally around us helped start the healing of my heart. I am not sure what I will believe in two years, but I cherish the return of my spirituality, even if it does not look exactly like any particular church's.

Two, I have always hated it when people said that Cash was given to me because I was "strong enough to handle it". Related annoying phrases included "God doesn't give us what we can't handle", "God sends special children to special people", and "These things happen for a reason". I have fought a minor crusade to make it clear that I am not stronger than people who got "normal" children - I think people just say that as a talisman as if saying the words will protect them from it happening to them. It is true that I have turned out to be damned strong, but any mother I know would have risen to the task. And yet - I had that little revelation about Cash being my reward yesterday. I am not sure how to reconcile my revelation with my firmly held belief that God did not deliberately send me a special needs kid. I think for now I will just wait and see how it sorts itself out because somehow I think they are both right.

Cash back

So I am going to write something now that I never thought I would. But I try to be honest in this space and today I had a sort of amazing moment and it would be weird to leave it out of this record of our lives.

It is Mother's Day. It was not an easy day - lots of rain, some arguing with Mom, some frustrating events. But viewed in another context, it was a blessed day - I got to be with my Mom, I got to be with my kid, I got to talk to my AD, Dad, and sister on the phone. So really, that makes it a good day.

And I was sitting in church today when suddenly it came to me that Cash is my reward. REWARD. A strange word, but it felt like it came from God. I often think of Cash as a blessing - but today it came to me clear as a bell that he is meant to be a reward. I don't know for what, but it was also clear he is supposed to lead me towards being a better person. That his existence has already made me a better person, along with everyone he touches. And that is very rewarding. It was almost like I felt I had been picked to experience this special joy, the joy of this special child who attracts love and goodness to him. The experience of being Cash's mom is often hard, sometimes brutally so, but today I knew that I had also been rewarded in a million ways by his presence in my life. And I know, I really do know, that it sounds a little crazy to say that message came from God, but it feels like it did.

A smile costs 1 cookie

I spent all day puttering around Greenville Hospital in cases. It was fun and interesting, as always.

Today Cash did something new. He never smiles when I ask him to and his teachers made a comment about his refusal to smile on command at the IEP meeting yesterday. So today I was holding a cookie and asked him to smile and he did. Multiple times. I am really pleased. I know it is small, but it will make it much easier to take a decent picture of him!

OMG, I had to pay two months of our COBRA health insurance today. Insane. We're talking over $1800, since it went up from $855/month to $963/month. And I can't let it lapse since Cash is a bear to get covered.

Ick Eww Phoo

Ugh, what an awful day. The big awfulness, among quite a few minor and moderate awfulnesses, was an IEP (Individual Education Plan) meeting at Cash's school. I remember Cash's first IEP in Aspen - I was worried sick that his teachers and therapists would spend the whole time telling me how "un-normal" he was. But instead, we started the meeting by listing Cash's strengths and it proceeded on to discussing what we wanted to work on and how they could help Cash. After 3 years of working with Cash's Aspen Elementary team, I didn't dread IEPs at all and looked forward to them as a chance to check in with all his therapists.

Today was not like that.

The IEP meeting here in Greenville last fall was hard - they operate very differently here, and I felt like Cash was just another special needs kid - but I have appreciated his teachers' and therapists' expertise over the year. I mentioned a few posts ago that we have become accustomed to the greater resources that are available here compared to Aspen. I still feel that, and I know that his team at school is kind and well-educated and generally does an excellent job with Cash. However, they run a terrible IEP meeting. It is overwhelmingly impersonal and negative. I understand that they have to do alot in a short period of time in order to meet state requirements, but I cannot believe that they could not do it with more sympathy and kindness. I am the parent of a severely special needs kid - I do not need to hear all the ways he is not doing what other kids his age are. I KNOW that. But all the therapy in the world isn't going to make Cash normal, so I need to focus on all his blessings, on all the things he can do. Again, that does not mean that we do not push him and strive, but it does mean that it offends me and hurts me when people act like he is failing. I know school is designed to measure achievement, but frankly Cash gets to opt out of that, in my opinion. He can only be measured against himself.

So not only was the IEP a two-hour list of the things Cash is not doing, but then at the end, I decided to tell the group that there is another way to conduct an IEP, one where you still report on and set goals, but you do it in an encouraging and positive manner. I think the people in that meeting today are truly a smart and thoughtful group of educators who never meant to upset me - hopefully this will encourage them to look at new strategies for doing IEP meetings. I of course got emotional, but I am glad I said it even though it was very hard for me. I can only hope that maybe it makes an IEP easier for some other parent in the future. 

Angels and fleas

I am currently reading "Expecting Adam" by Martha Beck, written about her experience with her Down Syndrome son. It is a fascinating little book, funny and mystical. Here is one quote that I feel like applies to Cash: "Adam has angels like a dog has fleas. He came here with them, and the more time you spend around him, the more likely you are to get them yourself."

Resources and therapies

Living here in Greenville has made it obvious to me that we need to live somewhere with adequate resources for Cash. Aspen was lovely when he was little - he had the kindest, smartest, most wonderful therapists and got a lot of personal attention both at therapy and at school. But other towns of Aspen's size just don't seem to have the same quality of therapy - we have to be someplace bigger. He has gotten great care here in Greenville, at Shriner's and at Kidnetics, and that has shown me what is possible. So Cash's school and therapies have become a major consideration for me in considering what job to take.

Plus his breathing is so much better now that we are at a lower altitude.

Mom and I have been on a cleanse recently. It is entertaining, in a hungry sort of way.

Normal

So I woke up last night at 3:30am after a minor nightmare, looked over at Cash's sweetly sleeping face, and got a little sad. Sadder than I have been in awhile. About him, I mean. I think it is partly because we spent yesterday evening with a cute family with an adorable little boy - I couldn't help but compare him to Cash a bit, even though I really really try not to do that. I try to focus on Cash as himself and as my normal. Sometimes I think I trick myself into thinking he is not as delayed/slow as he is. I think it is RIGHT that I focus on what he does, not what he doesn't, that I celebrate his accomplishments, not fulminate on his deficiencies. But that sort of means I have a skewed viewpoint, and every once in a while I remember what normal kids are like. It is hard.

Cash is getting his two new front teeth. How are those huge teeth going to fit into his tiny mouth??

I am going to turn down a job tomorrow - this is the second one. It's just not quite right.

Six and 3/4

Cash and I are on our way to a photo shoot. Alicia who works at the front desk at our apartment complex has offered up the services of her professional photographer husband. She said she just wanted to do something nice for us. Cash has a new tooth coming in, so I'm glad to be able to document the end of his "baby vamp" stage properly. Now ---- what to wear??!

An update on Cash's typical day: wake up with Mommy at 7:00am, be rushed to the potty to pee (as long as Mommy is awake enough to move that fast), get dressed, eat cereal for breakfast, leave at 7:40am with Gramma or Aunt Dianne for therapy at Shriner's Hospital or Kidnetics, get dropped off at school to hang out with Ms. Jan and the kids, take the bus home at 2:30pm, snack, goof off, make sure all his toys are working, cause trouble, pester, play, eat dinner at 6:00pm, take a bath, go to bed around 8:00pm. His current favorite toys are his iPad, Blue Music, his piano, my clock radio, and anything he shouldn't mess with. His current favorite food is chips, but he eats everything. He is being a pain in the neck at bedtime, but he is sleeping quietly and calmly. His breathing is the best it has been his whole life - so much so that I am thinking of taking him off his maintenance meds. Overall, he is thriving. 

From AA Milne:
When I was One
I had just begun
When I was Two
I was nearly new
When I was Three
I was hardly me
When I was Four
I was not much more
When I was Five
I was just alive
Now that I am Six
I'm as clever as clever
So I think I'll be six now for ever and ever

Reality star

The CNN special is scheduled to air at the end of May. I can't do anything about it, but if I had it to do again, I would do it differently. I would be more composed, less emotional, less sure about stem cells in general but more sure about the progress I have seen in Cash. I think there is a good chance the show will make me look foolish and Cash look unfortunate. I know that it is not going to show Dr. Geeta in a very good light and I am sad to be a part of that. But, like I said, I can't do anything about it now. So I will try to face this with grace and dignity, and then move on. No matter what the show says, it cannot take away Cash's progress. Whether CNN (and its viewers) believe stem cells helped Cash or not, I know what I see. And I am the one who has to get up every morning with him.

Speaking of, both Katie his PT and I think that Cash has shown an increase in cognition since our last return from India.

Open doors

School is out in 2 weeks, and we have a little graduation luncheon tomorrow. I need a job! But I am practicing patience. The right thing will come along, and being crazy about it won't help it happen faster.

Cash is percolating along great. I went to his PT session with Katie this morning - she said he is standing up straighter than ever. And she agreed with me that he listens all the time and follows directions often.

He has also taken to opening doors lately. Good skill, but may prove to be challenging in terms of keeping him where we put him. And I just watched him open the refrigerator, grab his milk sippy, and stand there drinking it inside the open fridge. We also had a family conference today about the fact that he eats nonstop from the time he gets home until bedtime. He is skinny, but still. We are going to try bigger meals, fewer snacks.

Mommy would like some wine with that whine

Oh, the whininess, the whininess. Cash was so easy-going as a baby that I am still surprised when he complains or pitches a fit. He has been able to express an opinion for a couple years now, but he gets more sure, more vociferous, more demanding all the time. Right now he is mostly whining when he wants food (which is ALWAYS), when we are making him walk somewhere he doesn't want to go, and at bedtime. The problem is that for a long time he asked for so little that when he wanted something, we usually indulged him. Now that is impossible. We have to say no sometimes, and that makes him MAD.

Update

I've been lousy about writing recently. I think it's because we're mostly doing fine. School is almost over and I'm occupied with shadowing and interviewing. I wish I had a job already, but I haven't really wanted any of the jobs that have come along so far. There are a couple on the horizon that I am hopeful about...but I refuse to get my heart set before knowing more about them. The job market is tough - most of my class is still looking for employment.

And Cash is doing well. He was a little whiny last week and a little clingy this week, but I think that's just settling in to being back home. His walking is somewhat weaker than before break, but it seems to be improving. His PT and ST say he was really on at therapy this week - doing all kinds of small new things. Katie at PT credited his busy little stem cells.

Our housing situation is making me somewhat sad. Three adult women relatives in the same house - maybe it is just hard. I love living with Mom and AD, but we all have different styles and it seems to be wearing on us, especially in this small space. I love them both so much, and so does Cash. They do a ton for us and we enjoy spending time with them. But I know it is hard for them to not have their own homes and space. I'm not sure what will happen after I get a job. In the meantime, Cash and I are lucky to have them.

Anesthesized

I went to the dentist yesterday morning to get a filling fixed and it wrecked me for the day. I did nothing but sleep (and, oh, do a job interview). I'm feeling better now, thanks.

School is almost over, though. I think our plan is to stay here in Greenville for a bit while I keep looking for a job. I have to say that it is stressful not to have a job yet, but I really think I'm still waiting for the RIGHT thing to come along. There are some promising things on the horizon, maybe a month or so out...

Cash is a little whiny since coming home. But he is healthy and talkative and engaged. He has access to all his music this week, but it is going away this weekend when we go back to potty training. This is going to be a siege war, not a quick strike, apparently.

Back home

We are settling back in to home. Cash is still struggling a bit to adjust to the time zone, and his walking doesn't seem quite as steady as before he left, but overall he is doing well. He eats three times as much as anyone I know.

Speaking of eating, our experiment with going off the gluten-free diet seems fine. We don't go overboard with feeding him either gluten or dairy now, but I don't see any changes in him at all since abandoning the diet.

I just read today that the current incidence rate of autism in the US is now estimated at 1 in 88 kids.

Why do birds suddenly appear, every time you are near

He's home - cute as ever and twice as naughty. We picked him up at 10:30 this morning after he and Katie had flown all night from Denver. She said he was excellent on the flights both on the way there and coming back. I said, of course, he is an experienced flyer. He seems to have had a good time with his dad in Aspen. I called almost every day and they seemed to be having fun. I know he got to see Gran and Pop and his cousins for Easter. I think he also saw our friends Susann and Sheryl during the visit.

He came home a little feisty - we went out to lunch and as soon as we sat down he signed bird and phone in a very demanding fashion. I knew he meant he wanted to play Angry Birds while he waited for his food - I explained that Mommy does not have an unlimited data plan the way Daddy apparently does (because Cash actually doesn't want to PLAY Angry Birds, he wants to follow the links to the videos). And then he threw a minor temper tantrum because he wanted the muffin that came with my meal instead of his own very tasty chicken fingers and fries. The tantrum did not stop until the muffin was removed from the table - at that point, he stuffed a french fry in his mouth while the sobs petered out.

Now he is listening to music on his iPad. I just stopped writing to smother and smoosh him with kisses. He is warm and fuzzy and soft and solid and a little bit mad at me.

BTW. I had a lovely week off myself. Lots of reading and adventuring.

Less than 18 hours so far

The eagle has landed in Colorado and been picked up by his grandparents. I miiiiissssss him. And at the same time, I am going to revel in my free time this week. Woo!

My heart will be 2 time zones away

I have to take Cash to the airport in 8 hours (at 4am). It is NOT fun. He will be gone 10 days, which is about 9 1/2 days too long for me.

But I am sure he will have a great time with his dad.

A huge thanks to my friend Katie for escorting Cash to Denver. She is a hero for doing this.

Vampire baby

When the going gets tough

Cash is just hilarious these days. He is SO responsive. For instance, we were out for a walk and he was whining and messing about with someone's car. I told him if he went to our car I would let him drive. He stopped, looked around, and made a beeline to our car. And that is only one example - he listens and responds with us all the time now.

And he is walking really well now, even without his braces.

He got a haircut on Saturday - short. His scars show, but it is cute. Chrissy at Snip Its is a genius of cutting the hair of small recalcitrant boys.

AD just came home from P'burgh where she has been for a week. It is nice to see her.

There has been some drama for me at school over the last few days. It has been tough, but I am tougher.

Good news and more good news

All kinds of good things to report about Cash:

Yesterday for my birthday, he walked up four stairs alone, using the banister. Laters, he did a new sign ("doctor"), and then he sucked through a straw for the first time at dinner. The straw thing is pretty big - we have been working on that for awhile. All good birthday presents for me!

Also, per Cash's local endocrinologist, he doesn't need growth hormone injections right now - he seems to be making his own. He is still really small (bone age =3 1/2), but if he has enough hormone circulating, then it is up to his body to use it. I wonder - did the stem cells help spur his pituitary gland to kick in?

Also, Cash is now vocalizing on command. Yay to Angela, his speech therapist! If you say "Cash, let me hear your voice", Cash says "mmmm". It is very cute. Also it is the first time he has ever made sounds when asked.

On the downside, Cash still has a cold. It's been a week. But he seems to have started breathing out of his mouth when sleeping when his nose is blocked, thank goodness. I've spent years sleeping next to him while he snarfled and snuffled and tossed and turned all night trying to clear his nose. It is a relief to hear him sleep relatively quietly even with a cold.

I had a nice bday - massage at the Grove Park Inn in Asheville and lots and lots of Hunger Games.

Fly boy

After an insane amount of negotiating and airfare-hunting, Cash is going to see his dad for spring break next week.

Bits and pieces

Cash got a virus on Tuesday night - a high fever that wouldn't respond well to meds. He's still sick today, but seems to be getting better. Between the two of us, we have been pretty sicky recently.

Josh and I are trying to work out plans for spring break. It is a challenge.

Did I write that last weekend Cash and I went to visit our friends Elizabeth, Bill, Silas, and Anna Dunn? We had dinner at their house in Spartanburg - tremendous fun. Cash was quiet, but he liked their indoor swing and their musical toys and their fish and their computer and their keyboard. Plus, Anna Dunn made him laugh. Plus, we had a dance party to finish off the evening. It was totally lovely. Cash really introduces me to the nicest people.

A little bit louder now

It's spring here :-)

And Cash's nose is running off his face.

Oh, new thing: Cash will now vocalize on request. His speech therapist says "Cash, let me hear your voice" and he responds with an "mmmm". It's small, but it's bigger than he has ever done. And she is working on making it louder and longer.

Our house has no music. It is embargoed until some pee ends up in the potty.

What is going on now

Cash went to the dentist today - no cavities. Plus 3 new molars and of course 3 lost teeth. I really need to get more pics of him without front teeth. He is the cutest little vampire baby.

Also an endocrinology appt on Friday. Hopefully we will get the growth hormone situation straightened out soon.

I had a pre-job interview today and I have a real interview tomorrow. Plus two tests tomorrow.

Member of the resistance army

Here's my analogy for potty training Cash:

It is like I am a big country and Cash is the little country that is being attacked. I have all the good weapons and resources (in fact, I brought out the nuclear option this weekend - I took away all his musical toys except when he goes in the potty), but Cash is fighting the way all out-gunned small countries fight - with guerilla tactics and passive resistance. He sits on the potty, and then 15 minutes later he pees on the floor. He holds it for 5 hours and then as soon as he has his nighttime diaper on, he fills it with half a day's worth of pee. I caught him smiling at me WHILE he peed on the floor earlier.

That is one stubborn little person. A stubborn little person who for some UNKNOWN reason is utterly opposed to going in the potty.

Well now he is too

Cash developed a runny nose today. So now we are both sick. I am just tired, so tired. He is already asleep, lying on AD's chest like she is a Tempur-pedic mattress.

Tomorrow Cash has an appointment with an endocrinologist. He has been out of growth hormone for a couple of weeks due to insurance company shenanigans. Hopefully, this appointment will start to resolve the situation. He's a tiny little thing, though he eats a ton. I mean it - he is a voracious eater.

I'm off to bed so I can do it all again tomorrow.

Someone's sick (and it's not Cash)

I am sick. I had a job interview on Friday and I had no voice for it. And since then, the laryngitis has turned into a sore throat and runny nose. Delightful. This week at school we are taking a practice IBHRE (accreditation exam), so maybe I will get a chance to rest.

Cash is well though. He is adjusting to his new braces, and his PT says he is standing much straighter now. He made me laugh today - I told him we would try to call his dad and he immediately left the living room and walked into my room and right to the computer. Unfortunately, his dad wasn't available, but still, it was cute.

Dad and Dot came to visit this weekend. It was very nice to see them. We went out to eat at American Grocery on Saturday and went to church on Sunday. Dot gave me some Mucinex, which I am feeling very happy about right now. 

Joyful

I want to put Julia's whole post on here (see my post below), but I can't figure out how. She describes the joy she sometimes feels when in thrall to her autistic obsessions and it kind of makes me understand Cash in a new way. Instead of seeing how "inappropriately" he gets excited sometimes (he does flap a bit and hop), I hope I see his enthusiasm as an expresssion of pure joy. I hope I can honor it and celebrate that he is experiencing the happiness of joy. Not everyone actually gets to be that happy - it is actually super nice that Cash does. That makes ME happy.

And in fact, I should note that Cash is pretty happy most of the time. He complains and fusses sometimes, but usually he seems content and occasionally he is joyful. We try hard to meet his needs and fulfill his wishes. And we do let him enjoy his favorite things - namely, music. His smile is one of the best things in the universe.

Awesome website link

This is from my friend Ariane's blog. It is totally wonderful and truly worth following the link.

http://networkedblogs.com/uF37A

All better

Cash is all better, no more fever. He went to school today and he's back to rascal-ing around the house. He chatted with his father last night. He lost another tooth over the weekend, so now he is missing both front teeth. He looks hilariously cute - it looks like he has little fangs.

Too hot to handle

Cash was sick all weekend. Fever. He stayed home from school today and we took him to the doctor this morning, who of course said he seems to have a virus. I could've bet $100 that the doctor would say that, but I had to take him anyway.

And he does seem better this evening. Again, I could've bet $100 on that - take him to the doctor and he will get better.

He skyped with his Gran and Pop today and was happy to see them despite still being a little under the weather.

Update

We started a new tactical offensive on potty training over the weekend, only to be thwarted by Cash getting a GI bug, including diarrhea. Operation aborted, hopefully to be relaunched next weekend.

He's fine now.

Cash's PT and speech therapist say they have seen alot of improvement over the last 6 weeks since we have been home. He is walking better, and he is adjusting quickly to his new leg braces. Plus he is opening doors now, and he has the best eye contact I have ever seen from him. He has also added the signs for "friend" and for "apple" this week. He is really quite amazing.

True

Today at church, the pastor said, "do not waste your life." The whole sermon, which was on following Jesus, was interesting, but that one phrase struck me. I believe the best, and maybe the only way not to waste your life is to love. To love, to give, to forgive, to show kindness and understanding to others. To shoulder your burdens with grace and humor and to show sympathy for others' burdens. Not to be perfect, but to strive. Not to be holier-than-thou, but to be real and honest. I have believed for quite a while that our lives are short and often hard, and that there is no way to make a real difference in the world, not even with great amounts of money, except to show love and kindness. That is the way we make a difference in the world - by brightening the lives of those around us. I don't always succeed, that's for sure, but I try, and I only want to try harder and succeed more.

I have a terrible memory for my own childhood, but about a month ago I remembered a little knick-knack from my Granny's home. I can picture a small red square on her kitchen window sill, with the words "God is Love" spelled out in alphabet letters by my father's hand when he was a child. As I have struggled to find my way back to God since Cash's birth, trying to figure out what I believe and what I don't, this is the one thing I know to be true: God is love. 

Mi amigo

Cash signed "friend" for the first time today. He is sparkly and engaged. Right now he is sitting on the couch with Gramma and me eating cookies and drinking milk before bedtime.

I am struggling a bit right now with things, but I am going to push on through. Cash is a nice bright spot.

Yikes

Cash woke up this morning with a crusty eye and a bloody nose. It is a sign of my love for him that I still found him cute. He also has a cold with a stuffy nose which means that he isn't sleeping well (and of course that means I don't sleep well). But he remains cheerful and charming. He really is talking and responding alot these days. It's sort of remarkable, actually. I think this will sound weird, but it is like he is becoming more and more of a person with whom you can interact somewhat normally. Not all the way there, of course, but getting there, getting there.

Sweet but stubborn

Cash has made potty training into a battle of wills, and believe me, he has a will of steel. I have decided to retreat from the battle, but not to concede. We are going to stop trying to potty train for a week, and then come back all guns blazing.

Similarly, I am pondering how to discipline Cash. He is old enough to need to be stopped from doing things sometimes. So far, we have mostly just removed him from situations when he was acting inappropriately. He knows the word no, but he really mostly ignores it. In fact, he seems to think it is funny to do things that he knows he is not allowed to do. Speaking firmly to him has little effect, withdrawing approval has none, and I just can't see using any kind of physical punishment (he has a high pain threshold and I think it would be confusing to him). And I don't think timeouts would a) make any sense to him, and b) be upsetting even if he did understand them. So. I am getting ready to do some research on discipline methods for special needs kids. I have to figure out SOME way to modify his inappropriate behavior when necessary.

Cash got new braces from Shriner's today. It will take awhile til he is comfortable in them.

Looking at last week's posts, all I write about any more is potty training. Sheesh. How boring.

Moving right along

Update on the potty training - yesterday, for Super Bowl Sunday, we decided to let Cash go pantless for a while so we could better track when he starts to pee. We took off his diaper at 10am. We took him to the toilet multiple times over the course of the rest of the day. He did NOT GO. He just held it. And held it. And held it. Clearly this is fun for him. But we are determined to outlast him.

Meanwhile, he is doing a couple of other new things: better self-feeding, opening doors by turning the knobs, and signing "Gramma" and "Aunt Dianne". "Gramma" is a tug on the ear, and "Aunt Dianne" is a D, which looks like the number one.

We went out for thai food for dinner tonight. Cash and I split pad thai - I ordered a 7 on the spicy scale, then got worried it would be too hot for him. Nope. He loved it. Ate a freakish amount. At one point, when I offered him chicken instead of the noodles, he whined and cried until I understood he wanted the noodles. He is a funny little kid.  

Tooth #2

Whew, it is Friday. This has been a very long week, really very long. Cash is thriving, but the rest of us are a bit worn out. We are worried about a dear family member who is in crisis - it is a terrible situation and it is taking a toll on all of us.

Plus I continue to have job interview stress and still lots of activity at school. This week I had 1 clinic (with Jodi in Spartanburg), 1 case (ablation of refractory A Fib at AnMed), 10 labs, and 1 test on heart failure. I love it all, but I admit I'm hoping a job comes along soon.

Cash lost his top left tooth yesterday. Tonight the Tooth Fairy is coming.

New stem cell study

Thank you to Debi for sharing this with me!

http://www.npr.org/blogs/health/2012/01/23/145636849/stem-cells-show-promise-as-blindness-treatment-in-early-study?sc=fb&cc=fp

A very long day

CNN was here today for their follow-up interview. I think it went fine. My two main points were 1) that I think Cash has made progress recently and I do attribute that to the stem cells, though I have no proof, and 2) that we will never know what stem cells can do unless we do research, and we have chosen to be a part of that research.
I went to Shriners' today to see Cash's PT. Katie and Laura are very sweet and very competent. They said Cash's shoulder strength has improved and he is stooping better.
In other news, we have had a tough day as a family today - we are all hurting, but I send some special love to AD.

Dude where's my car?

Nice stuff

Cash is working on the signs for Gramma and Aunt Dianne. He has picked up the general idea of the signs pretty quickly, but now we are refining them. He is also working on "egg".

Have I mentioned how much better Cash is breathing lately? It is such a pleasure. I am guessing it is a combination of living at a lower altitude and stronger lungs (due to stem cells?). And he hasn't fallen on his head recently - we struggled all autumn because his unsteady walking caused him to fall repeatedly and bang his head. It drove me crazy because of course he had to learn and that meant sometimes falling, but I hated the goose eggs on his pretty little head. I'm sure we aren't done with the accidents but I am enjoying the reprieve.

I am tired out. Off to study and then off to bed -

Wes, being eloquent

Apparently 60 Minutes did a segment on stem cell fraud last week. I didn't see it, though I do believe there are people who are using the promise of stem cells to take advantage of desperate people. This video is in response to the show, done by Wes, who was in India with Cash and Aunt Dianne last year.

http://www.youtube.com/watch?v=5A_gIQxaAUk

On the lam(b)

So last week was a little hectic mostly because I had a bunch of job interviews. Cash is doing well though - we're keeping up a slow and steady push on the potty training. He has hit the potty a couple of times, more through luck and our persistance than his participation, but at least it is a start. He got a haircut yesterday - longer on top, which we are trying to make a little spiky. While we were at the haircutters, I met the mother of another seemingly-autistic kid. She was very sweet and we are planning to have lunch tomorrow.

We also got the FBI to take Cash's fingerprints yesterday so we will know if he ever robs a bank.

Also, as of this week, we have eased up on the gluten-free diet. We aren't making any drastic changes, but we are going to allow a little more gluten and dairy. It doesn't seem to have made any difference in his health or behavior so far.

Thinking

So CNN is coming back to interview us in 2 weeks. I've been feeling stressed about it, worried about how we'll be portrayed, pressured to have Cash show some big progress to justify the trip. Today I decided to tackle the problem head on and think about what I really feel about our last trip to India.

I believe Cash is making very nice progress. He has some new signs, he is playing with his tongue more, somehow his face is more expressive, he is walking more strongly, he is super responsive, he is using his iPad appropriately, he is throwing more tantrums, he is working on potty training. Plus somehow he seems just a little different, qualitatively. But all of those things are small, and admittedly subjective. I can't prove any of them, and I certainly can't prove they are due to stem cells.

And I don't think I can convince either Josh or CNN to agree with me, and I don't think I should try. What I do think is that I get to enjoy his progress, regardless of what others think. Being the parent of a special needs kid is often hard and heartbreaking - also often wonderful and often routine - but sometimes emotionally devastating. As Cash's mom, I think stem cells have helped him - maybe a little, but maybe significantly - and that belief makes a difference in our lives. The actual progress Cash has made has helped in our everyday lives, but honestly so has the effort behind the stem cell therapy. Doing stem cells has put energy towards Cash and I know know know that has made a difference for him and for me. So maybe I can't prove that the stem cells are helping Cash potty train (though I think they are), but I can say definitively that the effort of doing stem cells has led to progress. And if CNN and its viewers want to judge me for that, so be it. Let them know what it's like to have no hope and then be offered a chance, no matter how small.

I should also remind myself that I have always said that stem cells are the great unknown right now, but we are a part of making more about them known.

"Hope is the thing with feathers that perches in your soul" - Emily Dickinson, poet. "And sometimes it makes a nest in your heart next to your aorta" - Stephanie Krolick, pacemaker student.