Thursday, June 30, 2011

The day to day

This is Hannah's new room, a huge upgrade from the last, as we don't currently have a roommate and we have the window view (it's the little things!)  There's a daybed by the window where I can sleep, but most nights I just snuggle right in with Miss H which suits us both just fine aside from the fact that the bed regularly inflates/deflates throughout the night-it's a pressure relieving bed and it's kind of annoying.


This is Hannah the first day she got to go in the pool.  The facilities here are amazing and the pool is no exception, plus they keep it a delicious bathtub water temperature.  They also have lots of fun toys, puzzles and "aquatic" versions of games (like laminated Uno cards) to keep kids entertained while they are in there.  Hannah had to wait until her stitches came out to go in, so it was a very special treat.  She only swam for 30 minutes and was totally wiped out after, a real wet noodle so to speak.  Today she swam again, this time for an hour.  She did awesome, but again it left her pretty pooped the rest of the day.



Hannah is kept very busy here every day.  Today's schedule: 1/2 hr of PT at 9am, followed by aqua therapy from 10-11, followed by time with the child life specialist (someone she plays with but who is also checking in on how she's doing emotionally) from 12:30-1, followed by OT from 1:30-2, followed by PT from 2:00-3:00.  Phew! In between, we eat, try to get out for fresh air, hang out in the rec room, read books/do art projects/cruise around the hospital grounds looking for a change of scenery.  In the evenings after dinner they always have some kind of organized rec activity for the kids and then it's shut eye at around 8:30. 

Now that we're in our own room and Hannah can get to bed at a reasonable hour, we've hit upon a routine that seems to work well.  We read books and then she gets a dose of Benadryl for her itchy back and a dose of Melatonin to help her sleep and then we watch a quick show on the iPad before it's lights out.  I've noticed that if Hannah has had an especially busy, taxing day, she complains a lot about her back being itchy but on more chill days or days when she has enough downtime between therapies and gets into the bedtime routine at a reasonable time, she doesn't have problems with her back.  Which makes me think it might be more than just itchy, but maybe also sore or sensitive (in a nerve sensitivity kind of way).  Either way, it motivates me to try to preserve a good routine for her with enough downtime and making sure she's in bed early.   She's working her tush off while she's here and using her body in new and different ways, not to mention she did have a major surgery just two weeks ago, so it makes sense that she gets out of wack easily.

However, I do think it's worth it to mix up the routine now and again with special visits from family and friends and special outings as a family.  It's taking a toll on everyone, being apart from each other for such a long time, and now that we can take Hannah out for the day in the car, we are going to try to get out all together every weekend.

Here are a few pics of some special visitors and our first big outing as a family, last weekend at Brendan's cousin's house.  We all had such a great time being together somewhere other than in the hospital.





And here is my girl, sitting up so well and using a tray I got for her and Isabelle (at Target, in case you're wondering!) which holds all of her art supplies and provides a great place for her to do one of her favorite activities.

Next post, more updates on how Hannah is doing with her PT...

Tuesday, June 28, 2011

Reflections on rehab

So many random thoughts go through my head every day through this experience, and I think, "I want to jot these down." But they don't gel together into this nice narrative, or if I want them to gel nicely, it would take me awhile to sort out the thoughts and organize them somehow first.  And that kind of time and mental energy is in short supply, so I decided to just toss them out into the blogosphere as is, so they're captured for posterity and in the off-chance that I someday do get to collect them.  So here goes:

-I'm turning into one of those people who have to pocket bread and butter from the restaurants they go to.  Anytime I spot salt and pepper, I grab it and put it into one of the drawers in the hospital room, next to the packets of sugar, ketchup and ranch dressing and piles of spare plastic silverware.  I am also hording paper cups, plates and napkins.  Eventually I'll totally recreate my kitchen pantry.  These are the things you do when you are not in control of your environment, I guess.
-Every evening after dinner, they plan some kind of recreational activity or entertainment for the kids.  The second night we were here, they had a Candyland party complete with a recreated game on the floor of this large room and two life-sized gingerbread pieces sitting in wheelchairs to be moved around the board.  Last night they brought a guy in who taught the kids some African drumming.  Each time I go to these events, I vascilate between smiling to myself because I think it's such a great thing they're doing, to choking back the huge lump in my throat because even though it's great, it's also incredibly sad to me to see these kids, kids with trachs and g-tubes, huge scars on their heads with patches of hair growing back, wheelchairs all lined up and everyone trying to create some semblance of "normalcy"-whatever that means-in this otherwise totally sterile environment.
-The lack of fresh air and exercise is getting to me.  We try hard to get out for fresh air as much as we can, but Hannah's schedule is pretty intense and she also doesn't fare well in the humid heat of a NJ summer.  When we do get out, it's often in the evening and there aren't a whole lot of desirable/safe places to walk around in the evening in this neck of the woods.
-This is a place where people come to get fixed up.  The hospital is the place where you are sick, and here is where you come to get well/strong/"better." Because of that, and because it's a kids' rehab center, it's a very lively, active, busy place.  Much better energy than at the hospital in NY.
-We planned for Hannah to be here, which is a very different state of mind for me to be in than the mom of the 17 year old who just got out of a week long coma after being hit by a car/hit-and-run while waiting to get ice cream at the Jersey shore on day 1 of his summer vacation.  For us, we are hoping Hannah will be in a better way when we leave than she was before the surgery.  For many others, this is the first stage in their acceptance of a whole new way of life and a new body.
-I'm getting tired of nursing assistants coming into Hannah's room at 7am to ask if she peed or pooped yet, and to get her up for the day even though we've expressed many times that we will be responsible for making sure she's up, and to please not disturb her in the morning so she can sleep.
-Every meal the staff asks what Hannah ate.  But sometimes a staff member will just take the printed out slip on her tray that shows what we ordered, and not even ask what she actually ate.  Hmm...
-I have a new appreciation for the Orthodox Jewish community.  There is a Hasidic boy on Hannah's floor who has the most amazing support network around him every day.  Last night at the drumming demonstration, two of the men in his community came in wearing funny hats and big red clown noses which all the kids got a kick out of.  They sing and dance and laugh with him and bring him lots of food.  He is very loved.
-It's sad to see the kids here that don't seem to have family visiting them.  I don't know their stories but I'm sure they aren't happy ones.  The nurses here are their surrogate mothers.  Amazing that these kids still smile, laugh and play.
-I miss Vermont.  I am so appreciative of being here for the opportunities it's affording Hannah, but I am also so aware of how important a sense of place is to me and my well-being.  I really do wilt when my surroundings lack easy access to nature.  I also miss my community and the values many of us share for the simple, local, unplugged life.
-I'm writing this in the dark while Hannah sleeps.  Finally she is getting some good solid zzzsss every day, which was lacking before we switched rooms. So while Hannah sleeps, I type...

Thursday, June 23, 2011

WE LOVE MAIL!

Finally got some mail! Guess it was in the mail room but not sorted-they do it only ONCE A WEEK-eeh gads. Anyway, here's a thank you for the love from the little lady herself.  Scroll down a few posts if you need Hannah's address.
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The big 4-0

Saturday was my 40th birthday.  While not quite the way I imagined ringing in my 40s, my amazing family made it a special day by baking a cake, bringing presents, and recreating a "birthday party" in the hospital dining room.  We broke some rules I'm sure when we lit the candle but lately my motto is, "Seek forgiveness and not permission."  And for Hannah, having all of us-my brother and his son Luca, my sister, Brendan, his mom, my mom, and all of our kids-sitting around the table was the best medicine for her.  And the best present for me.  Can you see all of the happy smiles? Here's Sam, Hannah, Luca and Isabelle having fun together no matter where they are.  Love those kids. And a shout-out to my mom for making this an actual birthday and not just another day.  Love you.

Tuesday, June 21, 2011

our girl working hard

OK, my fears about Hannah not being put to work and maximizing her time in rehab are being shot down left and right.  Today they had her riding an adaptive bike and in the stander out on the playground.  Below are two clips-a shout out to Kim, her PT at home-wanted to be sure you can see how awesome she is doing and get that new bike ordered for her asap for when she gets home:) (video quality not great as B filmed from his phone)

I guess B said today was a little more of a sad day for H, missing me big time and probably also wiped out from the late nights (her roommate stays up late unfortunately) and all the work she's been doing during the day.  To be expected; she won't be perky all the time.  But tomorrow I'll be headed back with Sam and Isabelle.  It's hard to be away but it's been a very good respite for me, to be back in the "land of the living" a little bit.  Anyone who's spent any kind of time in a hospital knows how tough it can be on the soul...

And without further ado, here's our wonder girl:

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Monday, June 20, 2011

The changes we can see in Hannah post SDR

I know there are some other parents reading this blog who are contemplating or about to have their child undertake this surgery, so I wanted to document some of the changes we are seeing in Hannah and some thoughts on the procedure, where we had it done, etc.

We struggled with whether or not to have SDR done at the place/with the surgeon that pioneered the minimally invasive procedure and has had such great results.  This is at Children's in St. Louis, where kids typically stay for 5 days and then go home to intensive PT.  We decided that if we could find a surgeon with a lot of experience and success with SDR, who chose candidates judicially and cut a good percentage of nerve rootlets but not so much that kids were rendered incapacitated for a very long time, we would look at other places.  We also decided some amount of inpatient PT made the most sense for us if we could swing it logistically, as we know that the surgery itself is meaningless if you don't put in the time in rehab after, and that with 3 small kids at home and living in rural VT, our intensive rehab options are a bit more limited.

Lucky for us, Dr. Richard Anderson at Children's Hospital of NY fit that bill.  He is a very well-known pediatric neurosurgeon who directs their Spasticity Center and has a great SDR track record.  We have family and friends in the NY metro area and near to the inpatient rehab place so it worked for us logistically about as well as it can work, to move your family of 5 for this kind of thing.

So we are very happy and feel like the amount of nerves he cut (around 60%) was just perfect for our girl, because here is what we are seeing now:

-Two days post op, the PT/OT team at Dr. Anderson's Spasticity Clinic measured Hannah's tone using the Ashworth scale and on all measures, her tone was normal.  NORMAL.  To move her legs around is like moving Isabelle's legs around.  They feel loose and like butter.  It's amazing.
-Now that Hannah's up and about, we also notice her arms are much looser, something many people report even though the surgery is only to the nerves affecting the lower limbs.
-Her voice is stronger and louder.  Before surgery, she was often hard to hear and spoke with a very soft voice.  Now she speaks loud and clear almost all the time in a big strong voice.
-Her bladder and bowel control is totally fine.  I was worried she would have a hard time with that initially but this has not been an issue at all.
-She is a social butterfly.  Before surgery, she was a little more reserved and quiet, and prone to getting very distracted.  I'm not sure what this is about, but I wonder if she was putting so much energy into getting her body do what she wanted it to do, that now that she doesn't have to struggle as much, she can focus more on what's going on around her and engage with her environment more.  This is such a great and unexpected gift, especially as she is getting ready for kindergarten.

So, we'll watch as Hannah's strength continues to come back and see where she goes with it now that excessive the tone has been removed.  But just one week out, I am already totally sure this was the right thing to do for our girl.

The skinny on rehab

Haven't had a chance to really post or process the transition to rehab until now since it's been really busy getting used to the new routine, having visitors, going back and forth to my parents' to be with Isabelle and Sam...

The transition here was really hard on many levels.  First, while being at Columbia wasn't a walk in the park, I had come to know the routine of the hospital, the best place to get cheap lunch, and where the closest coffee fix was.  My brother came by all the time and his house was our safe zone and only a  quick trip across the bridge.  The focus at Columbia was helping Hannah recover from surgery and be ready for discharge.  It was a little more "hands-off" as far as the intensity of help she was getting and we were on our own a lot.  We left Columbia just as Hannah was finally coming out of the anesthesia and pain med haze she'd been in, and she was getting pretty tired of not being able to do anything and being stuck in bed.  We billed the move to rehab as "the busy, fun place where you will have a lot going on and the place where you'll get strong."  We likened it to the Rehab Gym where she goes once a week for outpatient PT, a super fun, kid-friendly place with toys, games, and cool equipment.  So although the idea of not going home when we left Columbia was very hard (lots and lots of crying), she seemed okay with it and by the time to ambulance drove up to Children's Specialized, she was in good spirits, very talkative and positive and excited, back to being the Hannah I've missed seeing since before the surgery.

And then they wheeled her up to her room, and she caught sight of her bed which looked suspiciously like the hospital bed at Columbia, and then a barrage of nurses, PTs, OTs, doctors, etc. starting come in to evaluate her, meet us, fit her for a wheelchair, orient us, and on and on and after about a half hour, she and I were both hysterical.  Can you say "totally overwhelmed"?!  Hannah was totally crushed when she saw that same bed that she'd been stuck in for 4 days, and that took over.  She completely shut down, stopped talking, cried and cried and cried.  And I lost it.  I thought, "Oh my God what have we done? We can't stay here.  This is horrible and we're taking her home."  I felt like I landed on Mars.  I was disoriented, exhausted, stressed, and completed fried.  Brendan pulled me aside and said to me, "Look, we just got here, this is really intense, but if in a few days, it isn't working out, we're out of here."  I just needed to hear him say that, to know that we were not stuck somewhere, that ultimately we did have some control over our destiny.

I also think the stress of the past few days caught up to me.  Having Hannah in surgery for 6 hours, watching her struggle with pain, nausea, and a medication haze, seeing her not be able to move at all for a few days, and then seeing her start to perk back up again after being so quiet for so long, only to clam right back up when we got to rehab-it was just too much.

We were left to our own devices a little over the weekend which was hard, because Hannah didn't get there until Thursday afternoon and we only had Friday with the primary therapists/decision makers before the more low-key weekend staff took over.  We had a lot of questions and concerns about the direction they were going to take with her therapy.  Over the weekend, the therapy was minimal and didn't involve much more than some trunk/core work.  Meanwhile, Hannah is chomping at the bit to do more, more more: be outside, explore, move around, stand and bear weight, try taking steps, etc.  She wants no part of lying down in bed even when her back is sore and she clearly needs a break, and she's quickly tiring of her room and the lack of fresh air and limits on where she can go and what she can do.  We did manage to get a pass so we can take her off the hospital grounds so I took her outside for a lot of walks over the weekend-the poor kid is wilting from a lack of Vitamin D! It's amazing to me to see how many people come visit the kids on Hannah's floor and just sit around and watch TV with them or stay within the confines of the floor.  First thing I asked about, "when can we get outside and how much of Hannah's therapy can be done outside?"  Maybe it's a Vermont country mouse thing, who knows-we do like to be out and about as much as we can and are not a big TV family.

Anyway, so here's Hannah just itching to move and groove and it seemed like the pace of therapy was so slow we'll be here til Christmas.  So B and I had a chance to pow wow yesterday, write down our concerns to be raised with the primary PT, and hopefully help steer her therapy in a more active, aggressive direction.  Otherwise we may as well do all of this at home.

Well, today (Monday) Bren reports that the staff is definitely ramping things up, and that to their credit they probably just wanted to ease Hannah into the routine, wanted to give her more time to recover from surgery, and wanted to get to know her a little more first.  Also, it was the weekend so the primary staff not being around, the per diem folks weren't going to make any big changes to her schedule or activities.

So today, I saw some video of Hannah using a stander-will post pics when I can-which has wheels she can use to get herself around, but which keeps her in a standing position so she is bearing weight.  This is great for several reasons: first, she is bearing weight on her legs which will get them stronger.  But also, it allows her independent mobility but in a position different than the wheelchair which after being in it for a long time, by the end of the day makes her back pretty sore.  Also, the therapists had her doing a lot of sit-to-stand activities which activate those quad muscles and get those sleepy tired legs to do more work.  They said we can put her in the stander 3x a day, so she can use it even when she's not in therapy which is great, although we have to limit it to about 45 minutes a time until she gets a little stronger.  We are also eager to know what other things we can do with Hannah when she's not in therapy, but that are useful to her.  Practicing her sitting balance, doing more with her core, and continuing to do some weight bearing seem to be the name of the game right now.

It is so amazing to me and such a relief that Hannah is where she is already, just one week post-op.  We were told to expect a range of abilities in the first few weeks, and that it was all within the norm.  But to see Hannah tolerating what she is tolerating, with such little discomfort from the surgery and with such strong motivation to work hard, is a gift.  It was so scary to undertake this and worry that it might be too much for her, she was not strong enough under her tone to recover quickly, it would be a very big setback.  It is a setback in that she can't yet do what she was doing before and she is not happy about it, but the speed at which she's gaining back that ground is staggering and gives me such high hopes for where we can go from here.

Saturday, June 18, 2011

wheels

 See below for a quick clip of Hannah learning how to motor around in her wheelchair.  This is her first attempt from yesterday morning.  Today she is an old pro.  A little slow, but gaining ground quickly! Open-toed shoe wearers, beware:)



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address for Miss H

Finally, an address! See below and I'll post more on rehab soon, it's been a busy time filled with a lot of adjustments.  

PSE&G Children's Specialized Hospital at New Brunswick
Hannah Gallivan
Room 201A
200 Somerset Street
New Brunswick, NJ 08901-1942

Also, can I put in a small plug for a note or two to be sent to  Isabelle at my parents'? I think she could probably use a little TLC as well, and a special note might do the trick. 

Their address:

Isabelle Gallivan
c/o Siringo
15 Charles Pointe
Thornwood
Newark DE 19702


Thank you!

-Krista

Wednesday, June 15, 2011

Baby steps

Quick update to say that Hannah tried to take a few steps today which is awesome.  She's not afraid at all to try, which can sometimes happen with kids after SDR-they get anxious to try out their new bodies.  She did have a pretty hard time bearing weight and sort of buckled and wasn't able to hold herself up, but we tried to get her to push down into the floor with her feet which she was able to do a few times.

She also ventured out in the wheelchair again, this time for a much longer stretch-probably close to an hour-we checked out another playroom and then made our way down to the gift shop so she could pick out a new "guy"-which is what she and Isabelle call their stuffed animals-and a new blanket.  After this excursion, she didn't need any pain meds and was still up for sitting up in bed to read lots of stories after.   She also ate like a horse-finally the lack of food for the past few days caught up with her!

So, energy is slowing coming back as are bits of the Hannah personality we know and love.  She is still mostly very subdued and speaks in a super quiet whisper, but hopefully she'll start coming out of her shell a little more each day.  That part is the hardest for me-not knowing what's going on inside her head and worrying about all of the things that she might be thinking and feeling.  I miss my  bright bubbly girl...

Day 2

This was taken yesterday late afternoon/early evening.  It's the first genuine smile we've seen since Monday morning, and it was brought about by a visit from Chia, the little Pomeranian who came by for a visit.  Chia looked like one of Hannah's stuffed animals and was just as snuggly and soft, and very chill.  She licked Hannah's hand and then settled right in next to her on the bed while Hannah petted her.  I was so happy to see a tiny glimpse of my girl and her sparkly, happy personality which has been overshadowed by a  more subdued, sedated version.  Hannah was actually doing pretty well (comfortable, alert, more chatty) for a good part of the afternoon and then had a pretty good night's sleep.

This morning after we saw the neuro team, they said Hannah didn't need to lay flat anymore so if we wanted to have her try to sit up, she could.  They said she might get a headache or be nauseaus, so we should take it slow and lay her flat again if she felt yucky.  They also indicated we could try to get her out of bed, but we said we wanted to wait until we saw the PT/OT team and learned the proper way to move her.  So we decided to see if she wanted to sit up and eat breakfast, and she ate with gusto and tolerated sitting up in bed with no problems.

But that little bit of activity pooped her out enough so that by the time the PT and OT came, she was ready for a nap.  We did manage to get her sitting up on the edge of the bed and even into a wheelchair to take a ride around the unit and check out the playroom.  She looked awful-exhausted, barely able to keep her head up, and not saying a word.  Bren and I kept asking her, "Does your belly hurt? Your back? Are you tired?" and she didn't say much at all, or if she did it was in a teeny tiny whisper.  We asked if she was sure she wanted to go to the playroom, or would she rather take a nap and then try again later.  Nope, she wanted to go and get some books.  So off we went, and we did manage to convince her to give the camera a half-hearted smile.

After all of that excitement, when we got back to the room Hannah was pretty uncomfortable.  She had a hard time falling asleep and seemed to be having some back spasms again so we gave her some more valium in the hopes that they would subside and also help her fall asleep.  Everything is by mouth now-they want to get her off anything via IV so she can leave for rehab tomorrow.  She also had the catheter removed-horray-and will have to be able to pee on her own before she will be discharged.  Hoping that after she has a good rest and some lunch, we can get up to pee and venture out again, maybe even try to bear some weight in her legs.

I think the whole experience is hitting Hannah in waves, especially as some of the immediate surgery pain subsides and she realizes the other discomforts and unpleasantries.  They took off the bandages on her incision and that was the first she knew that she even had a "boo-boo" back there, which is now the source of some itchiness and irritation.  She is also more and more aware of missing Sam and Isabelle and Luca, and wanting to be anywhere but here.

She is such an adaptable kid with a really high tolerance for pain and for making the best of a situation, so I'm hoping once we can get her a little more comfortable and moving around more, and we're settled into the rehab place, we can create a new reality for her that, while definitely not ideal, will be somewhat entertaining and interesting enough that she'll be okay.  And it's during this time, that the distraction of visitors will come in very handy.  Right now, we've been very focused on her comfort and she has been in and out of it so not able to appreciate anyone's presence other than ours, but in another few days I think she'll be psyched for a diversion.

Planning to have Isabelle and Sam come visit at the end of the week which will be great, and we'll be putting the call out for others to come by soon after if able.  We'll keep y'all posted once we get the lay of the land at Children's Specialized.

Stay tuned and thanks again for all the support. xoxo Krista Brendan and Hannah

Tuesday, June 14, 2011

post surgery day 1

When we saw the attending this morning he said, "So I hear Hannah had an uneventful night."  Yes, compared to other possible scenarios for kids in the PICU, she really did have an uneventful night.  But...compared to what a regular night is like for Hannah, it was definitely not fun.

The biggest complaint I think is her stomach, wrecked from being empty except for lots of meds.  She is having some back spasms which is normal but painful, so that's being managed with muscle relaxants and morphine if needed.  She still has not had anything to eat and nothing but two sips of water this morning.  She slept on and off during the night, but when awake, was complaining about her belly hurting, wanting to go back to Luca's house (where we stayed over the weekend), and wanting to get out of bed.  She's also kind of freaked out by the catheter she has in.

I stayed with her last night so B could go get some sleep and all she wanted was me in bed with her, snuggled face-to-face.  She has zero interest in watching movies, listening to books being read to her, or anything other than that.  If Hannah doesn't want to watch a movie, I know she's really feeling crappy. 

What we are looking forward to now: today we'll get transferred out of ICU and into a regular room which will be more quiet and she won't be hooked up to so many bells and whistles.  We have to help her make it through the day just lying flat and hanging out-the only blessing to the way she feels is that she is not that up for getting up anyway.  Tomorrow morning, PT will come in and she can finally sit up and try to walk and go to the bathroom by herself.  Hopefully we can wean her off some of the pain meds and get her to eat something so her belly feels better.  And on Thursday, we'll get transferred to rehab.

So this is where things stand.  Bren and I are going to keep taking turns giving each other the chance to get out and get some fresh air, and tonight I'll probably sleep at Scott's and have him stay here.  Amazing how fast you adjust to a new "routine" and focus on the little things that mark progress.  I know once we're in NJ and settled in, this will all be so much better.

Monday, June 13, 2011

Sleepy but done

Surgery went really well, about six hours total. Dr Anderson said he cut about 60% of the nerve rootlets that are the cause of the spasticity in her legs.  He called this the "sweet spot"-not too much cutting to render her a total wet noodle, but enough that she will reap the benefits of the surgery.  He said she did great but that now, the hard part begins.  Meaning, she will have a lot of work to do, to get used to this new fangled body of hers.  Hence the super intensive therapy over the next year.

For now though, Hannah is resting somewhat comfortably in the pediatric ICU where she'll probably be for a day or so, then transferred to a regular floor where she'll stay until Thursday.  On Thursday she'll make the move to the rehab place in NJ.
I'm really happy with how comfortable she seems.  When she wakes, her biggest complaints are nausea from the anesthesia, and wanting to sit up.  One of the first things she said was "I want to get out of this bed." Don't blame you girlfriend. Sadly, she has to lay flat on her back until Wednesday morning.  I don't think that will be much of an issue for today since she's just sleeping a lot, but tomorrow will be a different story.  We do have some different ways to keep her occupied-got a loaner iPad-thanks Jill!-and lots of books, and the Child Life person also gave us a tabletop easel that we'll try to set next to her so she can draw while lying on her side.  If it's just a day of movies with us laying on the bed with her, so be it.  Whatever it takes.

I guess she'll start PT on Wednesday with them trying to get her up and moving a little, but I don't expect she'll be able to really bear weight on her legs.  The PT will be pretty low-key while she's in NY but once she gets to NJ it will ramp up to 2-2.5 hours a day.  I'm still feeling anxious about how she's going to react emotionally to all of the changes in her body, and glad that we'll have help navigating through that from the rehab folks at Children's Specialized. 

We plan to have Isabelle and Sam come visit this week, maybe Wed., and then we'll think about whether or not Bren and I want to switch off being with Hannah and being with Isabelle and Sam.  I think it's going to be a work in progress, but as I keep saying, one step at a time.

Thank you again to everyone for all of the love and support.  It's appreciated more than you know.  And I promise to get out the contact info for sending cards to Hannah as soon as she's transferred to Children's.

In surgery

Hi, all.  We got here by 6:30 and Hannah was in the OR by 8.  We got to go with her and wait while the gas took effect.  She was pretty nervous and scared.  Seeing us in surgical garb with face masks on probably didn't help.  We were so happy Dr. Uncle Scott could come in with us too.  We got one update already, to say that she was prepped and ready for Dr. Anderson to work his magic-the prep takes about an hour and a half as they have to intubate her, turn her onto her stomach and place the electrodes on her legs that will measure the spasticity.  We'll probably get another update in about 2 hours just to let us know how it's going, and then she will be done around 2 or 3.  So far the staff has been great and we feel like she is in the best hands, getting the best care.

The hardest thing-other than watching them put her to sleep-was seeing how scared she was and feeling like maybe I didn't tell her enough about what exactly was going to happen.  We took our queue from her and figured if she had questions, we'd answer them as best we could.  We also told her a little of what to expect-they'll put you to sleep, we'll have to sleep here, you will be weak at first and then we'll work to get you stronger-but we didn't go into that much more detail.  I hope she doesn't wake up feeling like we betrayed her, like "WTF did you guys do to me?!" But I keep thinking that if we did tell her more, it would probably not make her any less scared or  feel less pain when she wakes up.  It would also make her more anxious.

But I still hope she forgives me for putting her through this...

Anyway, more updates to come as we know them.

Sunday, June 12, 2011

Surgery day tomorrow!

Thank you to everyone who has called, sent e-mails/FB messages, dropped off goodies of one kind of another.  Tomorrow is Hannah's big day.  She will be at NY Children's Hospital probably thru Wed or Thurs and then transferred to Children's Specialized Hospital in NJ.  As soon as we have an address for her, we'll send it along since many have asked.

We got to my brother's place yesterday and have had a great day and a half of playing with family, eating good food and having fun.  The girls have not said much about what's to come.  We did tell them what's going to happen over the next few weeks but we purposely kept it simple and figured we'd field their questions as they came.  And not many have really come.  I'm thinking this might be a little self-preservation on their part.  Ignorance is bliss and all that.

My own approach has been not that far from theirs in some ways.  I prepared a TON for getting here, to the pre-surgery "staging area", and everyone has everything they need to be away from home for awhile, in various locations.  But as far as thinking much beyond getting here, I'm trying not to do a whole lot of that.  It makes my stomach hurt.  One step at a time, lots of deep breaths and a big leap of faith will hopefully get me through this.

But it's been hard to keep my creeping anxieties totally under wraps today.  I took a lot of pictures and video of Hannah as we played on the playground, looking at her body and noticing how strong she has gotten, and yet how tight and constrained her muscles are.  I keep wondering: what will her body look like after? how will it be to see that tightness removed? how will it be to see her struggle to do the most basic things after she has fought so hard to get the independence she has now?

Deep breaths, one step at a time...








Tuesday, June 7, 2011

Ode to Maggie

We sadly had to put down our just-shy-of-16 year old dog yesterday which has been a long time coming as she has been in a steady decline for about a year now, but which suddenly accelerated over the weekend.  This timing is surreal: wondering if she picked up on the vibes around here and was sending us the message that this was one journey she was going to sit out.

Miss Maggie Magnolia has been with me on every adventure I've taken since I got her 15 years ago in San Francisco, when I was 24.  We've been out west and back east, done the city thing and the country thing.  Gone running, camping, hiking and road tripping.  She's taken a back seat to the human kids in the family since the girls were born but has still been a mainstay, a toenail clicking on the wood floors presence for so long that the silence of her absence is deafening.

I know now why they say this is the hardest thing about having dogs, and something you just don't comprehend until you go through it.  I've been through a lot these past five years and have known some tough times, but putting Maggie down was tough tough tough and I'm feeling pretty sad about it.

I will miss my sweet Maggie, and picture her moving into her next life, young and spry and full of piss and vinegar and ready for her next adventure.

Goodbye good girl.