Sunday, September 19, 2010

Here's where we are. . . now where do we go?

Making decisions, managing services, appointments, etc. is stressful. I lay awake at night and second guess my (our) decisions and wonder if there's something else we could be doing, or someone else we could be seeing. Something we or (they) are missing. I've gotten better, and its no longer an unhealthy "google-panic" so to speak, but I am constantly looking for more things that could help us in enabling Sam to be her best self. I've found WONDERFUL resources this way (like the JH clinic, or our new cube chair desk, which is Sammie's favorite place IN THE WORLD to sit) and I've "met" so many amazing parents on similar journeys. Moms that are now my friends, moms that just "get it." Moms that I can literally send an email to that says, "I'm having a day," and know that they just get it. Friends I couldn't live without.

With Sam's second birthday just around the corner, we are filled with so much joy. TWO years with this little girl in our lives. Two magical, wonderful years.

But, with the RC program, birthdays also mark evaluations and service plan reviews. SO, there's that. So, in addition to celebrating our magic girl and our magic journey as parents, we are also at a place where we are thinking about what our next steps can and should be, and I'd be lying if I said I wasn't totally and completely overwhelmed at times. Like last night, when I stayed awake until midnight reading about treadmill therapy for kids (which Sam's PT does for her) and its effectiveness (?) and gait trainers and pediatric physiatrists and oh my.

Anyway, here's where we are . . .

We were hoping to get Sam an appointment at the Johns Hopkins Hypotonia Clinic before the end of the year (because we've paid our insurance deductible this year AND because we WANT to go. Like now). I learned about the clinic through one of my mom boards, and I LOVED the idea of taking Sam to a place where the doctors all specialize in hypotonia and a place where specialists from different areas of medicine (they have a developmental pediatrician, an orthopedist, a pediatric physiatrist, pediatric neurologist, geneticist and neuro-muscular specialist!) all work collaboratively to treat each child and come up with a very individualized treatment plan.

We've already seen so many "ologists" - neurology, orthopedist (okay that doesn't end in ology), geneticist (nor does that), neuro-opthamologist, etc. we don't know what to do with ourselves, and things are going really well with Sam (our pediatrician told me we could just stop seeing the specialists and be done with the whole testing thing if we were comfortable with that at this point). And B and I are firm in our belief that because thus far, all of the tests that have been done on Sam (metabolic, genetics, the MRI, etc.) have come back normal (whew!) and Sam is becoming older, understanding more (and looking at us with such fear when she's poked and prodded) that we will NOT put her through any additional tests unless (1) the results of those tests will somehow change the course of treatment (which as you all know, is therapy, therapy, therapy) or (2) it would help her get services/help she would otherwise not get.

That said, although we are "done" with testing (we think) we felt like it would be silly to NOT go to the JH clinic. So, I did the intake and learned that it would be at least two weeks before they even called me for an appointment and probably 4 months until we could get an appointment. I called on 8/31 to do the initial screening and learned yesterday they are still returning calls from the middle of August, so it will be awhile, which is kind of disappointing. We'd gotten really excited about it (well as excited as you can be to traipse your poor tot across the country to doctors), but like everything else with Sam, we'll be patient. Patient.

In the meantime, we are sort of on the fence about whether to just go ahead and follow up with Sam's neurologist and geneticist here (at our last appointments with them, they said to follow up in 6 months, and its been six months, but because of our view, our pediatrician's view, etc. we didn't). And, we've been thinking of seeing a pediatric physiatrist (very few in the country, but there's one near us). I just don't want to feel like I'm leaving any stone unturned. Perhaps because JH is going to take so long, that we should just follow up with these others. . . but fitting MORE appointments in our lives is not easy, and frankly, with all of Sam's therapy appointments (we are up to 5 a week + swimming) I HATE dragging her to MORE doctors, MORE evaluations. But, we'll probably do it. We can stand firm to OUR view and approach to testing, but hear what the doctors have to say. I think part of me is scared to go back. I know (or at least fear) that as she gets older, and the progress isn't as quick as we'd like, that someone (a doctor) will hit the panic button, and I'm terrified. No one has yet, but the thought scares me. But as B said, being afraid of bad news is NOT a reason to NOT go to the doctor!

We are also going to be touring an early intervention pre-school program, which is equally terrifying (to me). I love love love having Sam home with our fabulous nanny, but worry about the socialization and independence aspect. Sam is very very clingy (in a way I love!) to me, B, and her nanny, and once she turns 3, we'll have to transition her to pre-school (where she'll get therapies based on her needs at that time). I don't want that to be a horrible horrible experience for her, and we have some great early intervention pre-school type programs run by OTs and PTs here. . . so B and I are touring one at the end of the month. The program is only for a few hours three mornings a week, but might be great for her. I'm sure that we (B, me, and nanny) all baby Sammie B a bit and I think the program would encourage some independence from her. I don't know. How DO I/we know if we are doing the right things?

We'll see what we think when we tour. Thinking about it makes my stomach hurt as I type. Those programs don't include one-on-one therapies, so on top of those mornings, we'd still have to fit in her current therapy schedule, and part of me wonders if its just too much . . . but we shall tour. With open and excited minds. Because we'll do ANYTHING for this little bean. To the ends of the earth!

We had Sam's 2-year check-up with our general pediatrican Friday and she is very pleased with how we are doing. She said we are managing all the services oh so well, and that she really does support our decision/approach to testing, and that she thinks going to JH is not a necessity, but if we can, might as well. I adore her. I always want to invite her to go out to lunch, to be my friend, but that seems weird. But honestly, she's the BEST pediatrician we could have found. For me.

She has suggested we start seeing a developmental pediatrican. They sort of manage the other specialists, and oversee the "team." She thinks it will help in that (1) I won't have to be the "manager" of all of this and can let the developmental pediatrician do some of that and (2) when we get closer to Sam's third birthday and have to start talking about transitioning from the RC services to the school district, the developmental pediatrician will be her best advocate. Another specialist, another evaluation, another appointment, another tummy ache (for me). We've made the appointment with one she recommended, but its not until January 5th. So, we wait. Patience.

I so just wish I could make things easier for Sam. Could make her little body DO what her mind wants it to do. Wish wish wish.

Only other news from the pediatrician is that Sam has fallen to the 25th percentile for weight (she was higher) in the last year, which the doctor said isn't uncommon when babes become picky little toddlers, as she has, and particularly ones that are on restricted diets (as she is for her wheat allergy). BUT, we are supposed to make sure she's getting more fatty foods . . . olive oils, cheese, yogurt, peanut butter, etc. So, add another thing to think about to our list. Ah, to the ends of the earth!

That's the stressful stuff. The more exciting stuff (if you've managed to read all this, congratulations!) is that Sam is just doing so well. She's starting to take more and more independent steps (with a lot of support in her from her PT) in therapy, and beams with pride when she does. Getting her to stand is easy now, and she rarely protests with the spagetti legs of days past. Her little backward army crawl/roll is nearly perfected, and she's actually really getting around now . . . rolling off the changing table even! A first for us. We've gotten used to her being sort of non-mobile, so her sudden movements sometimes dwarf my reaction speed. But, no serious injuries. We have more and more rockstar-esque PT sessions and way fewer of the whiny kind. The heart to heart with our PT also really paid off . . . sessions have been really really good lately!

We have a busy week ahead--I have a filing on Wednesday, B is out of town for a conference, and Friday am we leave for San Diego to celebrate the precious Bean's birthday at Sea World :)

And another of those moments (the defining kind) - a few nights ago, Sam fell asleep alternating between rubbing and patting B's back while he slept. I laid there and just stared in awe at her. Could she be any sweeter? I think not.

Now to leave you with some recent pictures:

Our sweet little worker BEEEE in PT:

Super duper stoked over her new "desk:"

Just lounging in her pjs in her cube chair (the desk above, minus the desk part) watching some signing times dvds:

And all dressed up and headed out to dinner (and standing oh so well!):

And finally, seeing dada off to his conference this morning:

Sweetness, love and magic. And some worry on top. That's what this week has been.


Allison said...

She could not be cuter! And I know it's impossible not to doubt yourself, but just reading your posts makes me think how lucky Sam is to have you two as parents (and how lucky you are to have her)!!

Kristen said...

You are a great mom and doing everything possible to provide Sam with the best! Love the cube desk...need to look into that!

Sebrina said...

Just wanted to share..My B has a snug seat bronco gait trainer..we have had it about 4 months..she has learned to love the independance it brings..and we love how strong she has gotten using it.she also has hypotonia and is very weak in the has been the best thing...we now take it in to stores and let her her little cube chair we also use this at therapy and signing times is always playing

GingerB said...

Hi, I saw your comment on Love That Max. I totally get what you are saying about waiting for testing - we only just got an MRI for obvious CP at age two because to do so earlier would have had her admitted to the hospital so she wouldn't fast without an IV due to her metabolic disorder. Everyone said it wouldn't change treatment, and Hannah is doing beautifully and now I am back at square one with grief and fear now that I know she had a stroke as as well as the anoxic brain injury I suspected. So I don't regret waiting for testing because I've spent all these past months just getting Hannah stronger and not wasting emotional energy on freakouts. I assume you've had a full metabolic testing panel, and live in a state with the expanded newborn screening? Our metabloci crash was our only experience with hypotonia and it terrified me. And may I suggest hippotherapy? I've been so, so, so impressed. And, as much as I am prone to mommy guilt for not getting her a nannay, I love what a large day care has done to challenge Hannah. She spends all day walking around a playground in slippery woodchips, and if I'd kept her home with a nanny she wouldn't have that challenge. So, it sounds to me like you actually know how to make good decisions. Trust yourself! And every now and then come over to my blog and tell me the same thing, OK? She is lovely! And are you really getting a non walking child to potty train? I think you may be a a genius.