Excuse me while I whine just a little bit

I really have nothing to whine about. Some parents we know are at the hospital or the doctor's office All.The.Time. We are so lucky. Quinn is healthy, happy, and making great progress. But we are at the doctor's office more than most "regular" kids, and I am feeling a bit bummed about our last ordeal and some upcoming ones.

As readers of this blog know, Quinn has never, ever been a great sleeper. We have had some brief weeks of reprieve from frequent waking, and clonidine has certainly helped with falling asleep, but in general, Quinn's sleep is terrible.

So last night we took him to a sleep lab for an overnight evaluation. (Which, by the way, took approximately six months to get approved by insurance and scheduled...but that's another story.) The sleep lab people were as nice as they could be, but let's face it, taking your kid to the hospital always sucks. Quinn cried when they attached all the monitoring stuff to him (head electrodes covered by the weird little hat, plus monitors for his legs, heart, and breathing). I'm grateful for the opportunity to learn more about why his sleep is so disrupted, but sad that we have to do it in the first place.

We also need to schedule the following additional medical visits for him:

• Dermatology appointment for the large birthmark on his face, which, because it is getting ever darker, concerns the pediatrician
  
• Eye surgery to correct his strabismus
• Probably a repeat of the ear tube surgery since apparently at least one tube has fallen out, and one ear is "gunky" again (we learned this at the audiologist visit a few weeks ago)
• Possibly another visit to the MIND Institute if we decide to enroll Quinn in the minocycline trial

I'm sure we'll all feel better tomorrow after some rest. We'll just focus on holiday fun (that'll be the next post). Maybe another visit to Holiday Lane will cheer me up.

One of the houses on Holiday Lane this year.

Another dull post about sleep written by a sleep-deprived parent

It's looking like we will need to take Quinn for one of those overnight pediatric sleep evaluations, assuming we can get our insurance to pay for what I'm sure is an absurdly high fee. Quinn is taking over an hour to fall asleep with meds and still waking up multiple times per night, and at least twice a week he is up for hours in the middle of the night. We are so tired.

The cause of all this is not just that Quinn doesn't "need" more sleep. He is tired and cranky often. Sometimes in the middle of the night he is happy to be awake, but usually he is red-faced, crying, frustrated, and unable to get to sleep. He nods off instantly almost every time we take him for a drive. He is often late to school because after being up for hours in the night, he finally falls asleep at 6 in the morning, and we don't have the heart to wake the exhausted little man.

And though I am a bit grumpy due to sleep deprivation, if one more person says something about how "normal" it is for kids to have sleep problems, I might say something quite rude. There is nothing normal about kids and parents not getting adequate sleep for more than a few weeks at a time for over three and a half years even after reading numerous sleep books, getting ear tubes (which were supposed to help with sleep by relieving uncomfortable pressure), making multiple doctor visits, and trying three different sleep medications.

Grrr. End of rant. Off to bed.

Maybe it was good we were lazy about lazy eye

So we went to the doctor yesterday to discuss Quinn's sleep problems, and it turns out that the eye drops Quinn was prescribed for lazy eye (which we had begun using with greater frequency over the past 10 days in an effort to be better about treating the lazy eye), are a CNS stimulant for sensitive individuals. People with neurological conditions have greater sensitivity to the stimulant effects. Wow. We will most likely still adjust the sleep medication (on the doctor's orders, we increased clonidine last night and had a great night's sleep), but we are very happy to discover that simply NOT using those drops may improve sleep. This is great, but disturbing news. I think from now on, when anyone other than the MIND Institute or our pediatrician prescribes something, we will run it by our pediatrician first. Too many professionals seem to be unaware of the complexity of treating a kid with FXS. As for the lazy eye treatment, we may have to trick or bribe Quinn into wearing an eye patch. Arrr!

Less sleep, more words

The last few nights, Quinn's sleep has been awful: multiple wake-ups between midnight and five am, loud screaming and crying. It's been very hard. His clonidine and melatonin regime, which was working quite well for a few months, seems to have become ineffective. We're calling the doctor toady. Perhaps we need to increase the dosages. We've read some pretty discouraging statistics on Fragile X Syndrome and sleep disorders. They go together at a very high rate.

On the brighter side of things, Quinn is talking a lot! He can say "watch" (as in wristwatch), both spontaneously and on demand. He also said "box" several times this morning while grabbing a cardboard box that was on the kitchen table. We also cut his hair last night and it looks much better.

Onward we go.

Lazy about lazy eye treatment

So Quinn is developing a lazy eye, aka strabismus, a common problem for kids with Fragile X. We were prescribed some drops to blur the vision in his "good" eye so that he is forced to use the lazy one, and thus hopefully avert lazy eye. But as you can imagine, Quinn has no love for the drops, so we've been bad and lazy about using them. Has anyone else had to use these drops? Did they really work? Perhaps your success story will motivate us to adhere to the treatment a bit better.

The UC Davis MIND Institute

On Thursday we went to the MIND Institute for a second visit. We feel very lucky to live so close to the MIND, as we know folks come from all over the world to go there. Quinn is enrolled in the "baby study" there, a study comparing the visual processing of children with Fragile X or Down Syndrome with typically developing children. Quinn was not too into the movies they show to assess visual processing; he much preferred the Yo Gabba Gabba YouTube Clips they show in-between the study movies to keep kids interested.

While Quinn was watching the movies and completing the Mullen Assessment, I met with other researchers to complete a parent interview (including the Vineland Scales and a genogram). After we'd finished with the research stuff, we met with Dr. Hagerman and her colleagues for a clinical assessment.

We came away with some helpful recommendations/ideas:

- We're going to try a little tiny bit of sertraline with Quinn to see if it helps decrease anxiety and encourage expressive language skills. We were offered this last year and refused, but as Quinn is still not really talking, and they have had some success with sertraline and few side effects, we're willing to give it a try.

- We can wait on moving to the big boy bed

- We can continue to move very very slowly on potty training (Quinn likes his Elmo potty and likes to sit on it and make Elmo talk, and that's about it)

- We are definitely right to be concerned that Quinn's not getting enough/the right kind of speech therapy at school. According to their assessments (which differ somewhat from other assessments Quinn has had), last year his expressive language was at 7 months, and this year it is only at 9 months...so lots of work needed there.

- A few sessions with an in-home behavioral therapist can help us avoid tantrums, which often involve Quinn's biting us and pulling our hair.

One thing we really like about going to the MIND is not just the specific helpful advice, but how everyone there, including the other families in the waiting room, "get it". No one gives us really stupid advice (as we commonly experience out in the world). No one stares or asks silly questions. It's just such a pleasant place to be. We are very grateful for the opportunity to meet with such knowledgeable, friendly people and it gives us hope that we have options for managing some of Quinn's special needs.

Random observations from 4th day on Sertraline

Update day 5: I need to be very careful when consuming large amounts of sugar. Just had a small hot fudge sundae and I'm crashing very hard.

• I have spent much of my life being extremely anxious about things, and second guessing myself and being wracked with paralysis and indecision. It is very odd to have such feelings dramatically decrease simply because I'm taking half of a very small pill once a day. I didn't realize how much mental energy I was spending on these thoughts until I stopped having them.
• It really amazes me how small the pills are. And I only take half. It's much smaller than an aspirin or Tylenol or Advil. But the effect is much more profound.
• I'm shocked at how cheap it was, compared to the effect it has. I paid a $15 co-pay to visit the doctor, and paid a $5 co-pay to the pharmacy for a generic drug. It's weird to knock yourself out of a real depression with something so cheap. A single D&D book costs more. There are bars/restaurants I go to where I'd barely be able to get drunk for $20 once you added tax & tip. And I get drunk easily.
  
• I can't believe this stuff is legal and pot isn't.
• I hope to use the relief this is providing to reorganize our life so that the causes of my depression are removed. A big step: We've been authorized by Quinn's doctor to use 5mL of Benadryl to help him sleep if he wakes up. And it worked on him the one time we used it. Alleluia. Now to get more work...
• I'm on drugs!
• I'm fascinated by my own mental states, how they're different, and how I react to things. I'm constantly making comments about how I'm reacting differently, of how things feel different in my new state. I imagine it might get tiresome soon. I was like this the one time I really got high on pot. I never did most drugs, and it's rare that I get drunk. So it's very unusual for me to be in an altered state of consciousness.
• I still would rather play on the Internet than do work, chores, or unpleasant tasks.
• I have not become an uber-super-being. The somewhat manic rush I had after the first day has worn off.
  
• I still need to sleep the same amount.

I'm on drugs!

Well. I'm feeling quite a bit different today. I started feeling better last night while playing D&D minis. At first it was very bad. I was in Games of Berkeley, staring at the new minis that had come in, and thinking "This won't give me any pleasure. I might as well not buy them." But then I thought I'd feel stupid hanging out with everyone who was enjoying the new minis if I didn't have any of my own. So I bought some and played a game. I lost, but it was a good game and it got me feeling normal, like myself again. I also had a good conversation with my friend Paul, who was kind enough to check up on me after reading my "blanket of lead" post.

This morning Quinn is going back to school, having recovered sufficiently from his eye boogers (with the help of antibiotic drops) that he should no longer be eye booger contagious. I also took my first half dose (25 mg) of Sertraline, the generic version of Zoloft, this morning. (Holy fucking shit: in 2007, almost 30 million people in the United States were on this drug. That's like 10% of the country.) It may be all in my head, but I'm definitely feeling some effects: there's an overall hyperness and jitteryness (it could be the cup of coffee), a lack of introspection, some slight tingling on the pinky side of my right hand. Rather weird, I must say. I'm certainly not feeling like a blanket of lead or frustrated, which is nice. But I don't think my writing is as good, either. I have the urge to write very simple, straightforward, declarative sentences, devoid of poetic ornamentation. Of course, maybe that will make my writing better.

Not looking forward to the possible negative sexual side effects, but depression has definite negative sexual side effects so I guess that's a risk I'm willing to take. I'm utterly convinced that that previous sentence would have been written better were I not on this drug. This is very strange: it feels like my Internal Monologue is queiter, that I'm more directly connected to the outside world. It feels like I'm out of my head a bit, which is very unusual for me.

Well, the whole point of this is to be able to get more work done, so off I go...

Blanket o' Lead

It seems my rage and anxiety over Quinn's cold and the amount of time I have to spend caring for him has given way to a dull, gray, dead feeling. It's like a blanket of lead has fallen over everything. Quinn wont be able to go to school tomorrow. He's got boogers coming out of his eyes and needs antibiotic drops for 24 hours before he can go back. I'll have to spend most of another day taking care of him. I'm not pissed. I'm just sort of reacting like how I imagine a stupid cow might react: Slowly, not really caring much about anything. It's sort of a hopeless, resigned feeling. Like my body is going into autopilot or semi-hibernation until this shit is over. (But when will that be? Never.) I can feel my reaction time blunting: when my senses receive a new stimulus, my first reaction isn't "What was that?" but more "Oh God, should I even bother?" This really isn't like me. I can still "pass", and with effort carry on phone conversations, do uncomplicated household tasks, do all the Quinn stuff, and fulfill the daily routines of life. But it sort of feels like I'm operating myself by remote control. And that I'm not a particularly fun toy to operate. Again, feelings do come through. But they're strangely muted. It's just too much effort to get worked up about anything.

I'm seeing a doctor tomorrow morning. Or rather, a physician's assistant. Let's see what modern pharmacology has to offer.

Status updates

My posting to this blog has suffered recently, as I've been using Facebook as my primary venting/griping forum. For those of you not there, I'll transcribe some of my recent Quinn-related material. In chronological order:

Zachary Drake is with sick baby. :( How can I treat Sarah like a princess? Happy Mother's Day all (including those who are trying/hoping/attempting to convince hesitant partners!).
May 10 at 8:03am · Comment · Like

Happy Mother's Day Sarah! Quinn & I love you very much. You are so good to both of us :) :)
May 10 at 9:41pm · Comment · LikeUnlike · Share

Zachary Drake has read "Big Red Barn" far too many times today. Fortunately, I think Quinn will be able to go to school tomorrow. I was not optimized for extended bouts of special needs childcare. (Is anyone?)
May 11 at 6:17pm · Comment · Like

Zachary Drake needs D&D night like this planet needs to control greenhouse gas emissions.
May 12 at 4:57pm · Comment · Like

Zachary Drake another 4am wakeup. Resenting your own child makes you feel like crap. He's awfully cute though.
May 13 at 5:54am · Comment · Like

Zachary Drake Quinn built this tower with some guidance from his physical therapist. His skills are improving!

Zachary Drake So looking forward to watching episodes of "In Treatment" with my Yummy tonight.

Zachary Drake Quinn watches the garbage truck drive away

Zachary Drake Quinn's not napping because of gardener noise. I really needed that couple hours. But onward I trudge!!
May 15 at 2:29pm · Comment · Like

Zachary Drake got to see "A Streetcar Named Desire" last night. A play! How grown up!
May 16 at 7:04am · Comment · Like

Zachary Drake God, it feels so good to do real work. The show is largely intact in my mind and just comes pouring out if I'm properly focused. I just need to clean up a few spots and make sure I'm in proper mental and physical shape for the performance.
May 16 at 1:26pm · Comment · Like

Zachary Drake is buzzed from a very strong mojito. Yay parents' night out!
May 16 at 7:18pm · Comment · Like

Zachary Drake Quinn started making noises around 3am, and then really woke up around 5am. I've been walking and driving around with him for an hour now. Somehow I'm ok.
Sun 6:06am · Comment · Like

Zachary Drake Strolling through the mall at 6:21 am with Quinn, sleep deprived
Sun 6:27am · Comment · Like

Zachary Drake Quinn has a cold and a cough, so we're keeping him home. Another much needed day snatched away from us. God this parenthood thing can suck sometimes. Now I gotta change his shitty diaper. Oh, did I mention he's permanently mentally retarded? Sigh. (I apologize for the whiny nature of my recent status updates. I will return to political commentary and narcissistic self-expression as soon as possible.)
Mon 7:14am · Comment · Like

Zachary Drake Quinn took no nap today, but by stuffing my face with BBQ spare-ribs and fresh lychee nuts I've managed to stay sane.
Mon 4:41pm · Comment · Like

Zachary Drake Is ready for his show tomorrow morning!!!
Mon 10:32pm · Comment · Like

Zachary Drake got a partial standing ovation today. Happens with Dust Storm a lot: some people thing it's great and stand right away, some feel compelled to follow along, but it doesn't quite reach the tipping point where everyone feels they have to stand.
Yesterday at 4:46pm · Comment · Like

Zachary Drake Quinn's nose is still running like a river. Another day home from school. Another few hours I thought were mine snatched away. Another entry in the ledger of resentment. God this is hard.
8:42am · Comment · Like

Zachary Drake both of Quinn's nap attempts were ruined by bodily functions. What must I do to propitiate the gods?
2:32pm · Comment · Like

Reading these over, I'd say it's a decent sampling of the ups and downs.

Much happier today

For no particular good reason that I can think of, I'm much happier today than when I wrote that previous post. Indeed, I have every reason to be in an extremely crappy mood. Quinn woke up at 2 am this morning and did not go back to sleep until about 7 am or so. At around 5 am I took him for a drive and got him to sleep, but the transfer back to the crib failed and he woke up again. I managed to sleep a little bit in the morning when he finally slept, but I'm completely sleep deprived. And I had to take him to an ear doctor appointment this morning (it went fine; his left tube is a little encrusted but I got some drops that should take care of it) and then drop him off at school before coming to work.

And the difficult work situation I'm in is still going. But I'm just much happier. Maybe my rant let out a lot of bad energy that needed to get out. Or maybe it was something hormonal. When he woke up at 2 am, I was sleepy and thinking "aw, crap", but it wasn't the crazy feeling of helpless rage that I was having before.

I am thankful, thankful, thankful for my new-found serenity. May it last!

And for the record, I am not now nor have I ever been searching for an actual mistress. Sarah is my one and only :)

Ear Tubes

Double-posting today with a quick ear tube update. The ear tube procedure yesterday went very well. We arrived at 6:30 am, sat around for a longish while trying to prevent our slightly irritable, fasting child from boarding the elevators or pulling a garbage can onto himself, and finally got called in for surgery prep. They talked to us a lot about the anesthesia and post-surgery guidelines, had us dress Quinn in some nifty hospital pajamas, and then it all began. We stayed with him while they put him out. That was a creepy thing to watch. They restrained ("hugged" in the doctor's words) him, put the mask on his face, he struggled a little, and rapidly fell asleep. This was a creepier anesthesia experience than we had for the MRI, because for that procedure, they gave him an oral sedative and a little flashlight toy to play with. It worked much more slowly, and with the toy, he looked like a teenager at a rave, which added some comic relief to the experience.

Anyway, after he fell asleep, they sent us away. We went down to the lobby to get coffee to go, and a few minutes after we sat down with our coffee in the post-op waiting room, the doctor told us the procedure was done. About ten minutes later our little guy was awake. He was cranky and cuddly. Once they made sure his vitals were all normal, he was discharged, around 8:30 am. At home he insisted on eating great quantities of food even though he was supposed to take it easy to prevent post-anesthesia nausea. By mid-afternoon, it was impossible to get him to "rest" as was recommended in the discharge instructions. He was HAPPY and wanted to play, play, play.

So all went well. It's too soon to say if this has had any effect on his sleep, hearing, number of ear infections, or speech development, but he was full of joy all afternoon yesterday, and all day today. More updates to come after further observation. Thanks for the positive thoughts, everyone!

Ugh: Ear infections, negative ear pressure, antibiotics

OK, here's a fun little sample of life with a fragile X child: One of the symptoms of Fragile X is low muscle tone. This has all kinds of implications: delayed motor skills, delayed vocalization (your voice is controlled by muscles, though it's not clear how much of the delay is due to cognitive deficits and how much is due to muscle tone issues), and more ear infections.

Why would low muscle tone cause more ear infections? Well, it turns out that the tube that connects your ear to your nose (so pressure can be equalized) is opened and closed by some very small muscles. Those muscles have the same low tone problem that other muscles do. So that passage isn't opened or closed as well as it ought to be, and that means it's easier for bacteria to get a foothold in there.

And more ear infections means more diarrhea. Why is that? Because the antibiotics prescribed to kill the bacteria that cause the ear infections also kill the ecosystem in the large intestine, causing diarrhea, diaper rash, crying, stress at his school, parental sleeplessness, relationship stress, etc.

Quinn just got back from the audiologist (another 3 hour chunk out of our workdays, this one taken valiantly by my wife), and after two ten-day courses of antibiotics, still has fluid in his ears and negative ear drum pressure. This means he probably needs tubes in is ears (small tubes that put a hole in his eardrum that allow the pressure to equalize and the fluid to drain). This will probably be a big relief to Quinn, because it should lessen his ear annoyance. Indeed, we've heard anecdotal evidence that this can improve sleep issues dramatically. But it means surgery, general anesthesia, a raft of bills, possibly a round of dealing with the insurance company, more missed work, etc.

Oh, and he has to go back to the audiologist in 3 months because they can't do their experiments when he has fluid in his ears. Add another 3 hours of daytime occupation to one of our calendars.

Is all parenting like this?

A New Language

PT...OT...ST...SW...CHO...LPCH...PIP...LEAP...RCEB...IFSP...POS...IEP...SELPA...PECS...
proprioceptive...sensory integration...motor planning...CGG Repeat...FMR1...MGlur5...
premutation...full mutation...methylation...FXS...FXTAS...FXPOI...carrier...
mosaicism...respite...weighted vest...chewie tubes...Ps and Qs...orthopedic inserts...crib tent...pronation... expressive...receptive...melatonin... folic acid...carnitine...MRI...eustachian tube dysfunction...negative pressure...karyotype...VABS...Bailey Scales...IDS... Peabody...strabismus...mitral valve prolapse...tongue lateralization...lip closure...macrocephaly...hypotonia...joint laxity...joint compression...vestibular

It Takes A Village

This maxim exists for a reason. It's true for any kid. Raising kids is hard, parents need help, and kids benefit from interacting with lots of loving people. But kids with special needs really do need a village, a fact I am finding both challenging and wonderful.

The main challenge is logistics, as noted in the prior post. Here's a rundown of our family's team, roughly in order of frequency of contact:

- Special needs integrated pre-school including multiple teachers and aides
- Speech therapist
- Occupational therapist
- Physical therapist
- Infant development therapist (who we sadly had our last meeting with today as she's retiring).
- Housecleaners
- Therapist for parents to help us deal with this diagnosis and all the baggage it comes with
- On-call nanny to care for our child when he can't go to the special school due to the common cold he will most likely have all winter
- Babysitter (she has a day job so can't be the on-call nanny)
- General pediatrician
- Developmental pediatrician
- Social worker
- Geneticist
- Fragile X specialist
- Neurologist

(As a fun aside, which will be the subject of another post - lots of these village members will be replaced by new ones when our son turns three because at that point the school district will be in charge of his care. So we'll have a whole new set of people to get to know.)

Logistics aside, this is a blessing. It has been humbling and freeing to be able to say that I really don't know, often, what to do with my son or how to help him. I have to hand my son over to the village. There's no other choice because we can't possibly do this alone. If you are not the parents of a child with special needs, you may think I am suffering from a lack of confidence or need to read more parenting books. Here are a couple of examples of things I couldn't teach my son:

1. To eat. Literally, to bite, chew, swallow. My son would not touch non-pureed food of any kind until we got a feeding therapist to teach him how to eat. We tried everything from organic scrumptious fruit to french fries to cake, and at best he wouldn't touch them, and at worst, if we tried to introduce the offending substance into his mouth, he would cry, gag, and vomit. Our feeding therapist got him to eat within a few months.

2. To play. I really wanted my child to play with this toy. He loved it whenever I pushed the popper around the room, but whenever I handed the stick to him, he just looked at it blankly. After months of popper demonstrations which delighted my son, but did not succeed in teaching him how to play with it, I told the infant development therapist what was happening. She explained that he had a motor planning problem, and could not easily envision his body moving through space the way that most people could. Thus his difficulty in mimicking us. She put his hand on the toy, then put her hand over his (a common technique I now know is called hand-over-hand), and pushed the popper. Within a few minutes, he was smiling and popping the popper on his own.

Something in our society makes parents, especially mothers, feel that they must know how to take care of their child, that they are the expert of the family. It seems accepted that a parent will take pride in this responsibility. Some of our providers are sensitive to this, and will say, "But of course you know what will work for your son," and though I appreciate the comment, I sometimes think, "No, I really don't." And that's okay. I'm very grateful to our village for all their support, patience, and guidance. Even if it is a logistical nightmare.

Love and Survival, Part II

Love: I'm not even sure it makes sense to try to describe how I love my son. I guess it's like the love most parents have for their children, but since I only have one, I have no basis for comparison. Our child is very special. Not just special needs special, but special in the totally pre-euphemistic sense of the word. His smile lights up his face, our faces, and the faces of everyone he's with. He gives great hugs and slobbery kiss-like things. He loves books. His awkwardness and delays are quite charming. He walks like a tiny Frankenstein and sleeps with his butt in the air. He has developed a habit of taking our hands, bringing us across a room if necessary, to ask for things in the only way he can - by putting our hands on what he wants - videos, outside play, blocks. I love being dragged about my home by this little authority figure in a puppy sweater. I love how he smells (usually), how he picks up his sippy cup so earnestly and drinks his milk like he is tasting the sweet nectar of life itself, and how he laughs at many, many things. Like velcro and the swiffer wet jet.

Then there's the love for my husband. My exhausted (see below) sweetheart, who dreams of hiding in a cave for a long, long time to play d&d wows me every day with his tender and funny interactions with our more-than-a-handful child. He gives me frequent backrubs and is patient with me as I bore him with the tedium and stress of our over-scheduled new life (see below).

Survival: We are tired, oh so tired, all the time. Our son doesn't sleep well. Though he makes progress every day in little ways, the milestones are a long time coming. We see everything coming for months, and sometimes years. Unlike many of my friends with typically-developing kids, we never just "wake up" to find that our child is doing a new feat. We are thinking of having a first word party, because already we've been waiting about 1 year longer than most parents do. We might even have a bye-bye party, because he doesn't wave bye-bye either. Though there are benefits to this slower development (we still don't have to run to catch our toddler; he just doesn't move that fast and he has little interest in leaving the stroller when we're out), the downside is that we put in a lot of effort, and our rewards come less often and less dramatically. He has 4 therapy appointments per week, not including any extra appointments, like our upcoming visit to the M.I.N.D. Institute, regional center service review meetings, dentist appointments, regular doctor check-ups and sick visits. The therapies could be an entry unto themselves, but for now let's just say they are wonderful and our therapists are all incredible, dedicated, knowledgeable people BUT...we end up with a lot more on our to-do lists beyond the actual time spent in session. There is homework, and sometimes special supplies are needed. So, we don't just play with our child; we know we should play the right way. Here's what I got in the mail yesterday: a bill from a medical provider related to his care, a form to fill out related to his care, and a letter thanking me for my donation to FRAXA. There's also email and phone calls related to all of the above scheduling, doing, early intervening. I have honestly thought of hiring a personal assistant to help us with the logistics of it all.