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Preview: The Galli-ringo Family

The Galli-ringo Family





Updated: 2018-04-10T02:21:50.433-04:00

 



More amazing feats

2011-11-26T22:28:17.245-05:00

So we have been wondering when Hannah might move on to using crutches or canes.  We played around with them once since her surgery but without much success.  Before surgery, she could stand with the crutches but not take steps independently. We saw Hannah's regular physiatrist last week and we showed him how Hannah has been wanting to, and doing a really good job with, walking holding one



One grumpy "supermama"

2011-11-21T13:30:52.685-05:00

  Some time ago, I copied this piece another mom wrote somewhere in the blogosphere, about this notion that other people look to her like she has some kind of super powers because she is raising a child with a disability.  I can't find it right now, but I wish I could.  I'm feeling a little prickly lately about being held up as this example of great, positive parenting in a difficult situation.



Grateful for this smile

2011-11-01T14:22:34.527-04:00

Really, how can you have a bad day when you're around this smile? Clearly, this is a happy kid.  So I guess we're doing something right.  It's good to keep looking at these when some days are a little tough, like today with me feeling a little beat-up after Halloween.  I do have the requisite cute kid in costume pictures to share, and everyone had a bucket full of candy, a good sugar high and



A million little pieces

2011-10-10T20:46:54.102-04:00

No, not the semi-autobiographical novel by James Frey, but the million little pieces, things about Hannah that B and I know inside and out because she is our girl, and she's been in our world for six years, and it's second nature to us to see when she's slouching and sneak behind her and scootch her tush back, or put some peanuts next to her while she's coloring if it's been awhile since she last



Almost 4 months later...

2011-10-05T21:38:30.167-04:00

Sorry to all who diligently followed Hannah's SDR journey only to be left hanging once we got home.  Life got busy, in a good way, but I got buried under it all and am still digging out from laundry I think! But here we are, it's October and next week, the 13th, it will be 4 months since Hannah had her surgery.  Since we've been home, people have asked how it all went, how we made it through that



The sweetness of home

2011-08-05T21:43:38.142-04:00

Walking into our house last Friday night, my first thought was, "Wow, our place is pretty big!"  Well  yeah, compared to the window spot in room 202B at Children's Specialized, it sure is.  To be able to walk around and breathe the freedom of being in my own space was amazing.  The kids were pretty psyched also.  Sam ran around yelling, "Toys! Toys!"  Isabelle kept saying, "I'm so much bigger



We're outta here!

2011-07-28T22:12:50.649-04:00

Well, it's been a whirlwind since I last wrote.  We have been busy getting our girl ready for her discharge which is finally upon us-tomorrow we head back home after being away for 7 weeks, 6 of which have been at the inpatient rehab facility.  I can't believe that we undertook this journey 7 weeks ago.  So much thinking, worrying about and planning for, and now we're on the other side.  At



The freedom of water

2011-07-20T18:32:30.960-04:00

I wish we had the money to buy a heated walk-in pool that started out shallow and got progressively deeper.  And that was indoors, but you could somehow make it outdoors in the summer.  Because I think we would live in it.  Or at least Hannah would. To see her in the water is to see a kid who can walk, swim, float, kick...just like everyone else.  The freedom of the water is so liberating for



Unexpected revelations

2011-07-15T21:26:28.694-04:00

Hannah has become a real social butterfly while at rehab.  It's a trip to see her hanging out with her wheelchair posse, laughing and waving at everyone and telling me to "go over there, Mommy, so I can be with my friends." When Isabelle comes to visit, it's interesting to see how they interact and that Isabelle is the odd man out.  In fact, pretty much anyone who is not in a wheelchair or



The yin/yang of rhizotomy

2011-07-14T22:31:08.468-04:00

So I was going through some video clips to show Hannah's current PT the way she moved and walked before surgery.  We purposely took video the day before the procedure, when we were at a playground near my brother's house, because we wanted to be able to look back and see the changes.  I haven't looked at these until today, and honestly, they were hard to watch. In so many ways, Hannah's body is



Progress

2011-07-07T22:37:27.248-04:00

Our girl, she's doing big things and we're seeing big results.  But it takes time and patience and hard, hard work.  She is downright whopped at the end of the day but still her spirits are up (most of the time) and she literally sings her way thru therapy to the delight of all of her therapists.  Yesterday she sang out, "OK, this is really hard noooooowwww, please it's really hard noooowwww...."



Ode to Starbucks Via

2011-07-07T21:43:40.514-04:00

Oh my Via It would be un mal dia Without you in my life Four quarters for coffee Not very easy To scrounge up day and night Iced, decaf or high test No doubt you are the best Helpin me get thru this right



The day to day

2011-06-30T13:26:27.200-04:00

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



Reflections on rehab

2011-06-28T22:32:19.559-04:00

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



WE LOVE MAIL!

2011-06-23T21:11:34.894-04:00

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.  



The big 4-0

2011-06-23T13:21:52.162-04:00

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



our girl working hard

2011-06-21T15:27:25.193-04:00

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



The changes we can see in Hannah post SDR

2011-06-20T21:26:48.341-04:00

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



The skinny on rehab

2011-06-20T21:12:40.889-04:00

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



wheels

2011-06-18T15:37:59.782-04:00

 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:)



address for Miss H

2011-06-18T08:15:48.311-04:00

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,



Baby steps

2011-06-15T21:09:23.234-04:00

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



Day 2

2011-06-15T13:53:29.257-04:00

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



post surgery day 1

2011-06-14T09:31:59.951-04:00

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



Sleepy but done

2011-06-13T18:49:26.396-04:00

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