Tuesday, May 10, 2011

I'm not an expert, though I play one in real life

So, Max is all Botoxed up, and it's taken ten years off his face. Ha, ha. That would make him minus 2 years old. It'll be a few days before we see how much the injection loosens his right hand (particularly his thumb, which he tends to hold in as it's Krazy Glued to his pointer finger), and whether the shot to his salivary gland will have any effect on the drool. Thanks to all of you for the kind words and support. I will let you all know when I need funding to launch Mommy & Me Botox Clinics.

The iPad distracted Max before the procedure just fine. He woke up woozy and ticked off. But then we took an afternoon nap together, and afterward he was his usual cheerful, spaghetti-and-chocolate-ice-cream-eating self.

The Botox has evidently been a life-changing event for Max, because he informed me that from now on he wants to be known as Spaghetti Sauce Max, so buh-bye, Purple Spaghetti Max. (Note, he is as obsessed as ever with purple.)

All this talk of Botox and tendons and casting has my brain swirling. That's the thing about raising kids with special needs: You become a medical expert, like it or not. I spent a lot of last night Googling
"casting for cerebral palsy" and reading up on spasticity and stuff that made me wince like "tendon lengthening surgery." It also helped to read other people's experiences; Dawn's adorable little girl, Emily, just got Botox and serial casting. And she got purple casts.

If you would have told me before I had a child that I would be immersed in all this—me, the person who almost failed fifth grade science—I wouldn't have believed you. But now, doing the digging, talking with experts, and asking the hard questions are all second nature. Ditto for making sure that Team Max is strong, and that we carry out their advice as best we can. Right now, Team Max consists of:

1 school physical therapist (Max sees her twice a week)
1 school occupational therapist (twice a week)
1 home occupational therapist (twice a week)
1 school speech therapist (three times a week)
1 home speech therapist (once a week)
Another home speech therapist (once a week)
1 music therapist (once a week)
Pediatric neurologist (once a year)
Physiatrist (as needed)
1 wardrobe consultant (OK, not that)

The responsibility of running Team Max—and understanding the intricacies of cerebral palsy—weighs on me at times, especially when Max is having difficulties. I realize we are lucky he is generally healthy and not medically fragile. But then I compare myself to my friends, whose brains are not filled with medical-ese and for whom planning consists of orchestrating after-school activities and playdates (not setting up hospital appointments for Botox and serial casting). And I think, damn, I should start wearing a stethoscope or something.

Do you ever feel like a medical expert, too? Who's on your child's team?

Now, go take two chill pills and call me in the morning. Doctor's orders.


  1. Typically heard in meetings with me:

    Professional - "Have you ever considered looking into...?"

    Me - "I'm already 2/3 of the way through the process and waiting for the next referral to come through."

  2. We have less in-school therapy, but add two wacky alternative therapies and three doctors--neurosurgery, ophthalmology, and an orthopedist. And like you, I am grateful that Charlie is, by and large, healthy.

    I do feel a bit like a medical expert, but I would suck at PTA, so I think it's OK.

  3. You have *three* speech therapists??
    ... not looking forward to that.
    One of the things I remember about when I first found out about Malachi was how much I didn't want to spend all my free time learning about and researching CP.
    Oh well.

  4. Amen, Sister! I know more medical terms than I ever wanted to know.

    Team Jake seems to change way too often at school for me to keep track. Sigh. The only private therapist we have is his ABA therapist.

    We are currently forming Team Finn, though. So far OT, PT, education specialist, and teacher. We'll be expanding that team soon. Anyone want to join up? Ha!

    I'm actually thinking that I may need a Team Mommy which would include a housekeeper, cook, massage therapist, bartender, and someone to give me a mani-pedi. Then, I could have even more time to work with the kids on their various therapies.

    Rambling now. Have a great night everyone!

  5. Jillian just got Botox last Wednesday! No casts this time though. I was thrilled with how fast we saw results.

  6. just about every kind of specialist and therapist you can think of, that's who! =)
    M likes to make her rounds with the Docs and therapists...social butterfly.
    i can't let my mind think about what "normal" families' schedules consist of...what's a week like without a dr.s appt or therapy?? ha.
    hoping and praying that everything works out for max...love that boy! =)

  7. Ashley had serial casting. Worked a treat.
    Team Ashley is as long as your arm - OT,Physio, Orthopaedics, Visual Impairment, Orthotics, Paedy Consultant, Specialist Health Visitor, Hormone specialist, after-school carer, neurosurgeon ...
    agree with the medical "research" piece, never thought I'd have this knowledge either ..

  8. Ellen, I totally get where you are coming from. Jake has a huge team, ans when they're not all on the same page? It can be so hard to figure out what the "Right thing" to do is, when we're all figuring it out / making it up as we go along.

    Autism is tricky, and Jake is a non-classic version of it with and odd combination of issues.

    We are also doing alternative/bio-medical interventions, as well as psycho-pharmaceutical drugs. And lately his medication which was stable for a long while has seemed "off" & needs tweaking. But everything we tried came to naught, coming up against a wall here, and the doctors have nothing to offer than other things to "try" that are likely to cause the same mania side effects as the first drug that everyone thought was a great idea for Jake at this time. Sigh.

    Wish I didn't have to become an expert in cellular biology and psycho-pharmacology. But there it is.

    I hope the botox works wonders for Max.

  9. I love the botox jokes. My daughter is on lipitor at 2 - we joke about the commonalities of her and Grandpa's meds quite often! I can so relate to this post and even though our team is smaller - or at least less frequent, they are definitely out there. We have developmental therapist once a week at home, transplant clinic doc and nurses (four people - well five if you include the echocardiogram person)every six to eight weeks, our cath lab surgeons and anesthesiologists (there are a couple of teams - we know them both - well!) every three months on average, the nutritionist once a month, the endocrinologists (we've only seen them once, but may have to do a follow-up this summer), the gastroenterologists (about every six months or so), and of course our wonderful pede here at home who sees us whenever she shows any sign of possibly coming down sick as we are paranoid parents of an immunosuppressed child! Oh yeah, and I would have to include our long-distance pharmacist who we talk to at least once a month! I think that covers it...for now...Go Team!

  10. That's a lot of therapy. I panicked until I saw a lot of it is in school. Whew, one drop off spot.

    My daughter's only two, but whenever something that we may do in the future is mentioned, I'm always saying "Yes, I read about that." Even my other daughter knows what exercises to do with her sister, and they're both two.

  11. Yes, indeed. Evan the younger boys are fluent in hospital speak, and have been known to make embarrassing comments in public about feeding tubes, IVs, catheters, and the like....

  12. When Samuel was little--his doctor team consisted of the PCP (or should I say the staff person who dealt with referrals), a neurologist, an orthodod, dentist (he needs his teeth cleaned at least 4 times a year), a Physiatrist, and a GI.

    School consisted of a special ed teacher, a regular teacher, a PT, OT, Speech, Adapted Gym teacher, an aid and a nurse.

    At home we had a nurse and us.

    Christmas time sure was expensive : )

    I have a friend who has learned so much and knows more than a lot of her doctors has termed the word momologist. You can find her blog at http://www.momologist.com/.

    Samuel just moved into an adult living facility--at 18, 90lbs of dead weight, a spot opening in a great facility--it was time. But I can't even begin to count how many people there are now on his team. I dread having to learn all of their names.

    My advise as an "old" lady who has been doing this for a while. Don't let your team and all the appointments, push out your friends, neighbors and family. It is too easy to become isolated.

    So add the people you care the most about to your team and schedule "appointments" just like you do for the rest of the team. It is really, really important.

    Can't wait to hear how the Botox works.

  13. Our team is huge as well. We have school OT, PT, SLP and Assistive Tech, along with two great teachers and 3 great paras. We also have a private OT, PT and SLP. As for doctors, we have his pediatrician, CP Clinic neurologist, pulmonologist, eye doctor and orthopedic surgeon. Our son was originally in foster care so we had a huge additional team then. While they were all great, we were happy to adopt and be able to remove that part of the team.

    I like the idea of a team for me as was mentioned in the comments. I also have to agree that when the team members strongly disagree on course of action it gets rough.

  14. I was speaking with my mother on the phone last night and the conversation turned to why I don't volunteer at my daughter's school, despite the fact that I am an enthusiastic volunteer for other organizations. I couldn't really answer at the time, but after sleeping on it and reading this post, I know the answer: the school is not a "happy place" for me. It's where I go for IEP meetings, the place where I talk with the adaptive P.E. teacher (he always seems to be in the vicinity when I check Sarah Kate out for weekly private PT), and the place where I see all of her "typical" peers and am reminded of just how different our life is.

  15. I've been told, "Let me tell you what I'm thinking, then you can have a turn..."

    I've started to use a majority rules system when it comes to making decisions. If 2 out of 3 (or whatever the total) say I should do something than I do (but I get the final say since it is my body we're dealing with).

  16. Ooopsie, forgot the pediatric ophthalmologist!

    Yay, to all of us for being so well read and on top of everything.

    Shasta: Yep, we have three speech therapists for Max. Shasta, that's not to say Malachi will need three! Speech is Max's biggest challenge, and the more help he gets in that area, the better.

    Deb and Julie T: I AM ALL FOR A TEAM MOM! Great idea!!! And if can help with Team Finn, Deb, lemme know.

    Cheryl and Dave: That's awesome, and encouraging.

    Varda: Props for trying out all the alternative stuff. We did more of that when Max was little—craniosacral therapy, hyperbaric oxygen treatment—not so much lately.

    2ndheartmom: Wow, that's quite a team.... When Max was a baby, my dad was also getting physical therapy and we used to joke about the two of them as well.

    Let Kids Play: We also spend a small fortune on presents at the holiday time, but if anyone deserves it, it's Team Max.

    Andi: Props to you for knowing what you can and can't handle. I know that feeling.

    Sarah: "Majority rules" is always good advice!

  17. Love it! I've been saying it takes a metropolis to raise my son, who has Asperger's, which in case includes hyperactivity, aggression, opposition, auditory processing issues (though not a disorder), sensory stuff, short-term memory issues... Quite the puzzle, misdiagnosed, so I spent 80 hours a week devoted to reading and fighting for years.

    At one point, the school psychiatrist told me to stop reading. Say what? This is my kid you're talking about! Should have gotten rid of that one much earlier but he was free, with the school. (Day treatment, which my son didn't really need but there were no good alternatives, no offers. Happy to say he's moving to less restrictive setting in July, yes!)

    Let's see:

    behavioral therapist
    family therapist
    special-ed teacher
    assistant teacher
    1:1 for focus starting in July
    speech therapist (three different ways at school to focus on pragmatics, social skills)
    Afternoon sitter, without whom I never would have survived; no family support
    lawyer (for Turning 5)
    neuropsych/psychoeducational evaluator

    Along with the home support (cooking, cleaning, laundry, shopping, etc. etc.) I'd really love the following:

    Social secretary to cultivate friendships with moms in attempt to find play dates, which my son wants so badly, all the while hoping for "typical" role models.

    Project manager to research, tour, and apply to the six schools I applied to, then bring my son for evals. Research and coordinate special-needs or special-needs-friendly weekend sports, i.e. soccer. Research and find a backup sitter ready and able to take on a "challenging child." Apply for respite--paperwork, numerous calls to numerous people, three evals--then keep making followup calls throughout the bureaucracy. Look into hippotherapy, follow blogs, yahoo groups, social network.

    I could go on and on but I'm getting tired just thinking about it. Plus, after 5 years, I'm actually working part time!

  18. I LOVE Deb's idea of Team Mom! I've taken to signing some emails as Dr. Bowie. Somehow through several degrees of separation, someone ended up believing I was a real doctor (as opposed to the kind that just didn't have to pay for silly medical school).

  19. I sit on both sides of the fence. I am Mommy first to my daughter and am her advocate for all her needs. Secondly I am an RN who works with children with disabilities (I do spend a large portion of my days in our Botox clinic assisting our MD). The odd thing is a fair amount of E's team are my colleagues so it can get a bit dicey when I am not happy.
    I love hearing the Dad's come in and advocate for their children and recite their medical history. It does have me in awe as at home it is a bit one sided who does the appointments and advocacy (I think you can guess who).

  20. Hi, Ellen! I read your blog often though I don't comment much. My daughter, Aria (7yr surviving preemie w/ spastic quadriplegia cp, seizure disorder, etc. etc. etc.), got botox in her jaw on Monday to help with the excessive drooling. We've seen some good results until she's really tired or trying to focus on something. It's only been 2 days and we're hoping it only gets better. I hope it works out well for Max.

    I'm right there with you about a big medical/rehab team and being as informed as experts. Seems there is always something to learn or be in the know about...I sometimes wonder if my brain can fit anymore information! Same with Aria's medical team...just when I thought we'd settled in as one big happy medical team we have to make room for another specialist or therapist. It's fine because whatever has the potential for Aria's progress is fine by me.

    Thanks for your blog! I do thoroughly enjoy reading it.

  21. I recently started following your blog, and I love it - I love the way you present things and invite people to comment - it helps me think and reflect on my own situation and know that I'm not in this all alone!

    My son is still young (1 1/2), but our Team Morty is way bigger than I ever imagined:
    OT, PT, speach therapist, vision therapist, regular pedi, developmental pedi, opthalmologist, neurologist, ENT, physiatrist, orthopedist, favorite babysitter, respite center staff. Some days I hate the fact that there even is a team, and other days I don't know what I'd do without it.
    And I definitely have a Team Mommy started - housecleaning and a dog walker (really just for when Daddy is travelling).
    Morty also just got his first round of Botox - in his legs. She said the change would be subtle until about a month, but I can definitely tell a difference.

  22. Hi Ellen,
    I still get botox and I had hamstring lengthening surgery...and I'm fine:) My hip came out and all they did was they put a rod in between my legs so I couldn't move it...but, it was terrible:( I didn't get any sleep! But botox really does help me. And I used to do the same thing with my thumb, I still do. (I also have CP). Take care of yourself. Good thing Max has a Mom as nice as you on his team!:)

  23. Jack's team gets smaller every year. This past year, we lost the private OT and the school PT...both losses were expected and everyone agreed they were no longer necessary. LOVE that! Especially when I remember the years of two different schools and therapy all the way downtown three times a week!

    At 8 he has a developmental pediatrician (2x per year), two speech therapists, one OT, a TEACCH teacher, regular ed teacher (who is awesome!), and four aides who rotate to keep him from habituating to a single aide.

    Next year, he moves out of the TEACCH class into the regular LD class...a first at our school's autism program, which pushes as much inclusion as the child can handle. Everyone is so excited and so proud of Jack for being able to cross over. But we absolutely must start attention medication this fall as his poor attention is getting in the way of his progress. Our developmental ped got transferred (military) so we have to wait for his replacement to come in before we can start. But I'm about to become an expert in the field of attention medication. NOT what I would choose, but hey, it's what Jack needs!

  24. Have moments like that all the time ... espically when i am in an office that we go to all the time and there is a new family....

    My daughter just did a month of casting... and has helped her more then I would have thought... you know how it is... you try something and try not to get to excited till you see if it works... :)


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