Amber thoroughly made my day today . . .

I’m home with the kiddos today. This afternoon Ryan suggested a video chat with Amber and Daddy. I give them a call and Matt informs me that Amber had just fallen asleep (whoops!). As we’re talking, Amber wakes up, so Matt brings the phone over to her. As usual, I’m kissing into the phone and blowing her kisses. Matt says “Amber, can you blow Mama some kisses back?”. As I watch what happens next, I’m stunned. Amber is not only making the kiss noise (more movement than actual noise) but her beautiful little right hand comes up towards her mouth at the same time! Not quite all the way because her hand is restrained (she wants to scratch her healing head all the time). So, Matt frees her hand and asks her to do it again — AND SHE DOES — she brings that little hand all the way up to her mouth and blows me kisses!!! WHAT?? I am still shocked so I ask “Has she been doing this all day with you?” and he says “This is completely new, right now, what she’s doing with you!!”

I am STILL in disbelief right now even as I write this. Thank you Ryan for suggesting the video call. Thank you Amber for doing something new and amazing today. And Thank you God, for making this little miracle happen.

It’s been quite a busy day. Amber continues to do well. PT with Lauren consisted of gym mat on the floor doing exercises. During Amber’s “rest time”, Lauren let me do snuggle time with Amber. Let me tell you, that meant THE world to me. The last time I got to “snuggle” Amber was in between her throwing up every hour 3 weeks ago. So snuggle time today meant more than you know. After exercises on the mat, Lauren was able to get Amber to do a tall kneeling (like when we pray) against the hospital bed. Amber was supported by Lauren but held herself up by herself too, Lauren seemed pretty amazed, as did I! After that was wheelchair time, where we took Amber for a tour of Floor 8.

Speech Therapy was next. While Amber was still in her chair, resting, Sara came in with a cup of chocolate ice cream. It did not seem promising at first as Amber was tightly pursing her lips together. After a bit of persuading, Amber took a small bite! After another small bite, and a few sips of water, Amber graduated to two big bites!

And lastly, OT time. Caitlin made good use of the floor mat as well. She had Amber sitting up against her and had me hold a stack of Legos. Amber took a block off the top! She did it again! Next I loosened a top Lego and Amber pushed it down twice. After that, Caitlin got Amber down on her side for a bit where it looked like she was about to conk off! Then, tummy time where Caitlin was helping Amber with her neck. Amber was starting to get uncomfortable, so it was back to her side and then back to sitting against Caitlin. Then Caitlin asked if we’d like to do snuggle time — Um, you don’t have to ask me twice!!

With Amber in my arms against me, Caitlin sets me up with my back against a pillow, and pillow against Amber’s hospital bed, so I could be more comfortable. With my baby girl laying against me again, I can’t help but feel like it’s been an eternity since she’s been in my arms like this. But we’re here in the now and I will cherish this day forever.

It is currently 2:35 PM. I am in a position (litterally) that I thought would never happen again, or best case scenario, wouldn’t happen until far out in the future.

I am sitting on the floor of Amber’s hospital room, on a gym mat covered in a bedsheet. My back is up against a pillow, up against her hospital bed. Amber is nestled on my belly and chest. My arm securely wrapped around her right shoulder and neck with my hand resting on her belly. She is fast asleep. . . in my arm, against me, snuggling. The feeling of her against me, warm and comfy, breathing peacefully — that is something I will never take for granted again.

Yes, Amber had ice cream for breakfast . . . Vanilla, to be exact! After a couple of bites she was done, and that’s okay — we’ll take it!

Later on for PT, Lauren had Amber standing in this very interesting contraption. Amber did well but her helmet was bothering her and soon, she was clearly done. I bet it felt so good to be out of bed and standing, as it has been 21 days since the last time she did.

A few hours later, Caitlin with OT came in with a nifty chair so that we could finally give Amber a proper shower. (We had to switch rooms again yesterday, to a room that has an accessible shower, not a tub).

After all this hard work she earned a well deserved nap!

Although it seems like small steps for us, it is huge steps for Amber. God is good by helping Amber to remain brave and strong-willed — but then again, we wouldn’t expect anything less from Super Amber Grace!

For almost three weeks now, we have been posting updates on Amber’s progress to this blog. It’s been a bumpy road for Amber, but the progress has been positive. But it’s also been a bumpy road for us, her parents. Emotional highs and lows, and deep tests of our Faith. I wrote something privately a few days ago describing (in raw emotional detail) one of those low moments, and decided to share to help others understand a little bit better.

Yesterday (Thursday April 5th) was a rough day for me emotionally. I was not at the hospital when her breathing and feed tubes were extubated, and I felt guilty about that. I had slept home the night before with the rest of the family and had some appointments during the day. I know Matt was there and he was good about keeping me well updated and even sent me a picture of her sans facial tubes, which helped but wasn’t the same.

Once everything was set at home, it was time to hit the road. As I’m driving through Hartford, I can’t help but feel anxious about seeing Amber.

Walking from the parking garage, my arms are full of gifts, a bag of food, a second bag of food, a big bag of clean laundry, and my purse. As I smoosh to the back of a cramped elevator, we arrive at Level 3, Amber’s floor. After practically knocking people down trying to get out, I can’t get to our sleep room fast enough to drop off all this stuff so I can get to my girl.

As I’m walking down the hall, and just as I’m about to enter her room, a man with a white plastic helmet excuses himself as he comes out of her room. “I was just in there fitting her with this helmet and we should have one for her soon”. I politely nod and say okay. Then walk into Amber’s room.

She looks good with no tubes on her face . . . but that’s not entirely what my mind and tightness of my belly was focusing on. As I look at her, lying straight in bed, I see the left side of her head kind of awkwardly in the pillow, and the right side shaved with several lines of staples. She’s awake but with her eyes mainly to the right, bubbles pooled in her mouth, and raspy breathing. When she yawns, it’s only the right side . . . and on further inspection, I see that the left side of her face and mouth clearly has a droop. It saddens me. Because even though I “knew” it was going to be a long road, seeing her like this validates just how really long the road will be.

Not knowing if Amber can get back to what Amber was, hurts my heart so much. It is so scary and I hate that there is doubt in my heart. I’m supposed to be strong for her but I was standing there with all these thoughts and emotions coursing through me, and in my mind’s eye, I saw myself high-tailing it out of this room, out of this hospital, and out of CT. What hurt my heart the most? Is the fact that I am a coward.

Self doubt. Doubt in everything. Just feeling low..

But then, when she saw me in her view, and gave me a little right sided smile with an ever so slight dimple showing…all of those feelings that were so strong just seconds ago, fizzled out just a tiny bit. Even though I know there is a good chance Amber will never be as she once was, I’m glad that God is giving me a little bit more extra time with her today.

After a sponge bath in the morning, the doctors felt that she needed to have the feeding tube put back in. As I’m standing there watching our nurses, Rose and Angie, struggle to get it placed correctly, Amber is clearly in discomfort, even with medication. I felt so bad and had to stop myself from crying several times. After what felt like an eternity, they were done.

We got to celebrate Matt’s father’s 70th Birthday with Amber today. After hanging out with her, Uncle Mark and Auntie Meg came up to look after her for a few hours so we could go out for lunch to celebrate than go to Mass at Father Charlie’s Church. After Mass, Father Charlie gave Matt and I big hugs and asked about Amber. He also let the kids pick out Koosh balls.

Back at the hospital, we find that the doctors have removed her a-line and one of her IV’s. Marie gives Amber a pink Koosh ball that she picked out for her as well as Ryan giving her the purple one he picked out. Amber loved it! Marie secured it to her finger and she was moving her arm and hand all around with it, touching it, squishing it, pincer grasping it…what a great toy (and therapy) For her!

Amber received her first sponge bath today along with a very much needed shampooing.

After the bustle of her bath the “T” team came in in a swarm: Physical Therapy, Occupational Therapy, and Speech Therapy. They decided it was time for her to sit in a chair. So they lifted her gently making sure all of her tubing was out of the way yet still connected and put her in it. She looked like such a big girl and she looked a little relieved maybe to be out of that bed . . . who wouldn’t be after 16 days of being laid up? She ended up staying like that for 2 hours! She was definitely tired by the end of the session. While she was in her chair, the Speech Therapist tried giving her some sips of water. She did swallow a little bit but did end up coughing which the therapists think scared her because she made sure to keep her lips tight when the therapist tried apple sauce. Right now she is getting an IV with nutrients but Dr. Martin has warned us that she may require a feed tube through her belly to get the feeding that she really needs.

She has not done much communication today with us I think she is exhausted and frustrated from the past couple of days . . . that or maybe as she’s coming down from the sedation and reality is starting to sink in?

So, still moving forward, one step at a time, and many many steps still to go . . .

Super Heroes have super powers right?

We have been watching (and blogging about) how Amber is doing as she travels this road to recovery, and taking special note of those things we find most interesting. Her communicating with us through our “own” sign language, things like: right hand squeezes, number of fingers up (#2 means well, #2 and #1 means privacy please), thumbs up, finger snapping, nodding and maybe, even a smirk. As well as trying to breathe on her own and moving her legs and right arm wonderfully. Having no experience with this ourselves, we figure that these are just the normal steps down this road. But to have multiple doctors come to her room today to see her because of this “profound recovery” (their words) and learning that this progress is well beyond their expectations, two even leaving with happy tears in their eyes — that is flooring. Yes, still a long long way to go, but definitely heartening to understand that Amber is off to a super start.

In that same vein:

I never thought in a million years that my daughter would be celebrating her 1/2 birthday not only in the hospital recovering from 2 brain surgeries, but also battling a terminal illness.

6 months ago, when she turned 6 years old, she received a D.C. Super Hero Girl doll — a Super Girl. A doll that hauntingly looks just like Amber; blonde hair, blue eyes. Not just any blue eyes mind you, but blue eyes with a twinkle of spunk in them…just like Amber. This doll is a special doll. Special yes, because it’s one of her favorite characters on the show but more like, it’s a doll that imitates her life currently. Amber is Super Girl. She is my true life super hero. For what she’s endured over these past 14 days…no one, (let alone a 6.5 year old girl) should ever have to go through something devastating like this. But reality is, she is. And reality is, she’s fighting this Amber’s Way. A Super Girl fighting her own form of kryptonite, and fighting it hard. For that, Amber is not only just Amber Grace, she’s Super Amber Grace…and she’s my hero.

Today was a Thumbs Up kind of day.  Literally.

An uneventful morning with watching her numbers and making sure she was comfortable.  With the lowered sodium intake her head pressure number has been staying in range.  The doctors gave our nurse Alex the okay to lower her sedative even more.  Her blood pressure has finally lowered a bit but her her heart rate has been sporadic most of the time and elevated when she is stressed out.  When she is stressed out she shakes with muscle tremors and clearly looks scared, which breaks our heart.  With a firm holding of her hand and whispers of comfort, she finally settles down.

She had her first visit from her Physical Therapist Lauren.  One thing that Lauren did, was ask Amber to move her ankle…and Amber moved her right ankle!

Later in the day, Amber had her eyes open and Alex was checking her over.  Alex held her hand and asked Amber to squeeze it… and she did!  Alex went one step further with it, “Amber, can you wiggle your toes?”… Amber wiggled her right toes!  Amazing.  So then Matt asked, “Amber, would you like us to put the TV on?  Squeeze Mama’s hand if you would like us to put it on”.  Nothing.  So Matt asks a different question.  “Okay, how about some music, would you like us to play some music?  Squeeze Mama’s hand if you want us to put some music on”…  Big squeeze!  Yes!  So then I ask Amber “Oh Amber, how about some Minecraft with Pat and Jen (her favorite set of YouTube videos)?  Would you like that?”…she nods her head, ever so slightly!  Matt says “Amber, squeeze Mama’s hand if you want some Minecraft.”…she squeezes my hand!  So, Matt takes it a step further — “Amber, if you can hear it, put one finger up”…Amber slowly puts one finger out!  Wow — okay — so at this point I’m trying not to freak out.  Matt takes it up a notch — “Okay Amber, good job with putting your finger up.  If you can see the Minecraft video, put 3 fingers up.”…Amber uncurled 3 little fingers!!!  I’m floored — I’m trying every ounce of to contain myself, I cannot believe she is communicating with us — WOW!!!  So then Matt pushes it even further (yes, Matt is definitely persistent) — “Okay Amber, you are doing such a GREAT job, but one more thing, can you give us a thumbs up?”…and there goes the thumb.  Slowly, weakly, but it was definite.  Our baby girl, after 12 days of not communicating, has given us a Thumbs Up!

A Thumbs Up day for sure.  A celebration.  But making sure to keep everything in perspective.  There will be ups and there will be downs, today was an up, but we don’t know yet what tomorrow may hold.  I am simply hopeful for more ups than downs.  To bring it back to Dr. Martin for a moment…he made a reference to Amber’s situation the day she came here by comparing it to eating an elephant.  You can’t eat a whole elephant in one bite.  The way you eat an elephant is to take small bites…lots and lots of bites, and eventually, that elephant will be almost all gone, but remember, it’s a BIG elephant.  We have a massive amount of elephant yet to eat.

Patience, hope, and lots and lots of prayers…

And so, Amber continues on her way.

Last Monday (3-26) I was introduced to Father Charlie. I was especially looking forward to this visit because Chrissy, our Family Support Clinician, had gone on and on about how much of a special guy he is and how we have to meet him. Matt had the opportunity to meet him prior, loved him and couldn’t wait until I got to meet him.

So in walks Father Charlie with a “Hi, you must be Caron” while embracing me in a big bear hug…”You know, I was told a lot about you but then I didn’t believe any of it because there’s no one that perfect! But I can see I was wrong!”. I loved this man already!!!

Chrissy was not kidding when she said Father Charlie is a character. Quite a character indeed; funny, loving, empathetic, and best of all, comforting. After chatting about various things, one including his pet-friendly Masses, he asked if he could say a special prayer over Amber.

He took out a small round red object. “This is a relic of the Blessed Stanley Rother” he said, “Blessed Stanley Rother was an Oklahoma priest martyred in Guatemala. In order for him to become a Saint, he needs one miracle… Maybe Amber, could be his”. Father Charlie places the relic on Amber’s head and he says the special prayer…

When we think miracles, we often think BIG, like cures. Matt and I, at this point, will take even a smaller miracle — like being able to remove Amber’s breathing tube, or seeing Amber flex the muscles in her left side, or having Amber open her eyes and recognize us. Anything positive that God gives us we will take in a heartbeat.