Amber just came out of the OR. G-tube installation was successful, and almost all of the stitches/staples have been removed from her head (just a few left in place to keep things healing properly). The feeding tube has also been removed from her nose, so there is nothing covering her beautiful face at all now. She is just waking up as I type, and is smiling. We will all be heading back to her room pretty soon.

Thank you all for the prayers, please keep ’em coming!! But for today so far, we are looking good!

We started the day with a trip to the imaging department, for a fluoroscopy to confirm all of her internals are flowing correctly, to prepare for the g-tube surgery on Monday. Was pretty cool watching in real-time as the contrast worked it’s way through her system, with the scanning machine snapping dozens of pictures. Everything looks good, so we are full steam ahead for Monday.

We returned to the room, and started to watch TV, when I decided to try something else – because too much TV isn’t good for anyone. I handed Amber a crayon, and held a coloring book in her lap. And she immediately started coloring! Not just scribbles across the page either – she stayed inside the lines, indicating (to me, anyway) both good vision and good control. She didn’t get very far on her picture before tiring out, but this work of art is going right on the fridge!!

But then, as I’m putting things away, I think I hear Amber breathing roughly, like she did when the breathing tube was removed. I look over, but she doesn’t seem to be struggling at all – when I realize that she is moving her lips and making sounds! I can’t quite make out what she is saying, but she is definitely trying to talk. So I encourage her and tell her I love her, and I ask if she can say “I love you” – AND SHE DOES! Very softly, but more than just a whisper, and very clear. It is pretty hard for her, but she is excited, we are excited, and she does it several more times during the day. This is another major milestone for her!

Then, we cap it all off by taking her for a stroll outside. It’s a beautiful sunny day, about 70°F, and Amber’s Physical Therapist got everything lined up so we could take her out in her wheelie chair for about 40 minutes. To make things even sweeter, her Speech Therapist lined up the permission for us to feed her a popsicle, so we are outside in the sun, eating the best tasting orange popsicle ever, with her brother and sisters, aunt and uncle visiting too. This was a wonderful picture to see.

Lots of beautiful pictures today, surpassed only by the beauty of a few words, delivered by our beautiful Amber. We thank God for letting us experience this beauty today.

Another busy, exhausting day for Amber – but again, forward progress.

Physical Therapy had her on the floor with me today, and tried a few positions. She did well propping herself up on her elbows (yes, both of them!), but was pretty worn out from yesterday’s PT so she didn’t last very long. She woke up a bit, though, with Speech Therapy. While she didn’t want the chocolate ice cream they tried first, she definitely liked the orange popsicle. After a bit of a nap, we got back on the floor with Occupational Therapy, and I got to snuggle with her a bit. Then it was nap time again.

A quiet evening, but then it was decided that Amber should have GI scan tomorrow morning to prep for the g-tube surgery on Monday. So, we are switching off her food at midnight tonight, and supplying only liquids, by IV – but of course, her one remaining IV decided it’s been in too long (3 weeks) and needed to be replaced. Amber’s veins decided not to cooperate too well (they’ve been through a lot lately), so it took 3 tries with lots of tears – but it’s done, and I sit here now watching her sleep peacefully.

I prayed the Rosary earlier tonight, reflecting on the Sorrowful Mysteries. I may not be able to understand exactly what Amber is going through herself, the fear, the pain, her trial. But as a parent, as Amber’s Dad, I find my own pain, my agony, in not being able to take this for her, in not being able to just fix this for her, in not being able understand why this must happen.

And so I have spent much time praying to Mary, asking for her intercession as a sympathetic parent. At this point, we know what Amber must go through (there is no looking back), so we just pray for the strength for her to continue forward, and the strength for us to carry her, to take as much of this burden as we are allowed. And as we have throughout our journey so far, we pray for those that are providing medical care to Amber, that they have the strength and clarity to continue to provide the best possible care they can.

Amber has been doing really well on the Recovery floor.

Amber is definitely being more active. Lots of smiles, even a few eye-rolls for Daddy.

We had a great session with physical therapy, occupational therapy, and speech therapy all together. They helped her sit up, and she started supporting her head herself. Then, they offered her a blue popsicle – and she opened her mouth WIDE and stuck out her tongue! A few licks later, she took a bite and swallowed! We even got her to stick out her tongue to show off how blue it was. That is the first food Amber has had in three weeks, and she clearly enjoyed it – so much, that shortly after we heard her trying to make sounds! PT/OT/ST were very happy with this (as were Mommy and Daddy), so tomorrow PT/OT are going to try giving her a shower and having her support herself (with assistance) on her arms.

Caron went home tonight to spend time with the rest of the family (we’ve been alternating nights at home), so we did a little video chat to say good night – and at the end, when I said “ok Amber, can you say good night to Mommy?”, I definitely heard some (weak) sounds from her mouth!

We continue to make good progress. Next week we’ll be looking to add a g-tube to make sure she is getting sufficient nutrition, and we’ve got 3 weeks to build her back up to be ready for the next major steps: MRI, surgery (replacing the skull flap) and then to begin the cancer treatments shortly after.

And so, we pray for strength and healing for Amber over these next few weeks, and the mental and emotional fortitude for all of us to start preparing for that next phase.

I’d like to start with a thank you (again). We’ve shared some deep, truthful, raw feelings we’ve had through this process. While we have had other significant trials in our lives, this is by far the most difficult for us. But the comments, emails, texts, phone calls … all of this support for us as we support Amber … has been incredible. Today has been truly moving for us.

Several have commented on the strength of our Faith reflected in our posts here, which made us pause for a moment – we’ve never considered our Faith particularly strong. Sure, we were both raised Roman Catholic, bring our family to Church weekly, and do Believe. But, we’ve never been tested like this before, to understand ourselves how strong our Faith really is. This too has been a moving realization for us.

This morning, PT/OT came together and got Amber out of bed and into her chair. They did a whole bunch of exercises with her, which seemed to wake her up and energize her a bit. Still difficult watching her go through these basic muscle exercises, but was quite reassuring to take her down the hall in her chair, and see her enjoy the change in scenery and activity. She even got to pet a dog in the hospital for a bit. And then, Valentine the clown came to visit, and shortly behind was Father Charlie! Amber had a good time with her visitors, lots of smiles. Was very good to get her moving today.

But the biggest news – today, Amber was moved out of the ICU! With all the tubes out (except the feeding tube) and being stable, it was time to “graduate” to Recovery on the eighth floor. So we moved all of the cards, flowers, toys, clothes, and food up to the new room. Again, CCMC is a fantastic place – her new room is bright and cheery, private with a nice couch/bed for us to sleep on, and a private bathroom. It reminded me a little of Moving Day on the first and last days of college.

And lastly, we have a target we are moving towards. April 30 is the tentative date for Amber’s next MRI and surgery, to remove any tumor regrowth and replace the skull flap, and May 15 is tentatively when we begin the first round of cancer treatments, as radiation therapy.

So lots of moving today; and a prayer that we just keep moving forward.

Sunday is a day of rest; and so today we kept things pretty quiet and rested.

We started with a pretty solid 7 hours of sleep (for her, not for me)! It’s pretty tough having been asleep for two weeks, and then waking up in a place where there is lights and noise at all times. But Amber finally fell off to sleep about midnight, and slept through till 7 AM with only one interruption about 4 AM to reposition her.

After a morning visitor and sponge bath, Amber took a short nap. Then early this afternoon, we turned off the last of her primary sedative (Fentanyl), reducing her to a much lower dose of an alternative, which is delivered as part of her feeding. This means that all IV medications are done, and they removed her “central line”. No more IV, everything just delivered via feeding tube! It is beautiful to see all that hardware removed – all that’s left is the feeding tube and a spare IV line in the ankle “just in case”.

Then Amber got to sit upright in her chair for about an hour and a half. We looked out the window for a bit, watched some Minecraft videos on the tablet, and read a Princess Jasmine (Disney’s Aladdin) story. And after all this activity, she is taking another short nap.

I had a good conversation with Dr. Paul, one of the neurosurgeons. From that first day she woke where she was giving us thumbs-up and finger snaps, we’ve noticed her slow down significantly, so I asked about that. He assures me that this is not unexpected – her head pressures are good (evidenced by the positive visible depression in her head where the skull flap is removed, which would be swollen and puffy otherwise) so there is no indication of problem. So he believes the lack of activity recently is just a result of her dealing with the exhaustion of breathing on her own and moving around more.

Of course, I trust Dr. Paul, he knows better than I do, and he has been straight with us throughout. I trust God too, that He will continue to do what is best for Amber, and that He will enable the medical staff here to provide the best possible care for her. But as Amber’s Dad … it’s incredibly difficult to watch my little girl go through this, unable to really communicate, unable to fully comprehend, unable to move much of her body or even swallow properly, unable to focus her vision.

And so I pray that God gives us the strength to do whatever we need to do for Amber, and to accept His will, whatever that may be.

Just a short note this morning. I want to thank everyone for all the comments on this blog, the Facebook messages, the emails, the text messages, the phone calls, the cards, the packages, everything. I assure you that Caron and I do read, listen to, and use everything that you send, even though we may not have a chance to respond to most. Thank you all for the support, it truly helps us keep moving forward through this emotional rollercoaster.

The rest of the day was fairly quiet. Still coming down on the sedations; so she stays more awake and alert. We met with speech therapy in the afternoon. Amber was able to drink a little bit of water, and tasted just a little bit of applesauce – enough to show that she can swallow just fine. Tomorrow we will try some more, hopefully her throat is a bit less sore so she is more willing. No talking yet, but Mom caught a few vocal sounds coming out when she yawned.

But, the highlight for me today – Amber smiled! With all the tubes removed, Amber gave me that “oh Daddy, knock it off” trademark smirk. While physically it may still be a weak smile, it was the strongest smile I’ve ever seen.

Tonight, I came home to spend the night with the rest of our family. Marie, Brianna, and Ryan have been so brave, so incredibly strong through this all. Sometimes I wonder if they understand the magnitude of all this; then out of the blue they’ll say or ask something that proves that they do understand completely ( Ryan at a 3-year old level, of course ). Truly, we are blessed to have such a strong, tight family, and to be supported by our larger family and friends through this all.

So again, today we pray for strength for Amber to continue taking these great steps in the right direction, and for the medical staff who are providing such great care and support to Amber and to us. And we thank God for our children, our family, our friends; the time we have already had, and the time still ahead of us.

Early update, as I didn’t want to wait until tonight.

Already today we have taken another big step – the breathing tube and food tube were both just removed! She is resting peacefully, much mouth and throat discomfort, but her breathing is strong. Speech therapy will be checking in a bit later to see how she is swallowing and if she is ready for talking!

Also had a CT Scan this morning, which looks good.

Not just another bite off the elephant – I think we ate a whole elephant steak today. And it’s not even noon yet!

How do you eat an elephant?  One bite at a time.  Another good day today, but also reminders of what is still ahead of us.

Right from day #1, Dr. Martin cautioned us that we were going to be eating an elephant.  Thinking about this process as a singular whole is terrifying, so we’ve been forcing ourselves to tackle this one day at a time, one bite at a time, one milestone at a time.

Today, Amber continued to improve her communication with us.  She will wave when she wants us, will squeeze our hand or give us thumbs-up to yes and no questions, and can show us however many fingers (on her right hand) as we ask.  But, as Caron noted yesterday, I can be a bit “persistent”.  I know there is a risk to her memory from the original stroke and second surgery, so today I decided to see if we could test that.  I asked her if she remembered the Daddy/Daughter dance from a few weeks back, and she squeezed my hand “yes”.  Then I asked if she remembered the dress she wore, and again, she squeezed “yes”.  Then I told her I was going to ask her about the color of her dress.  Did you wear a red dress? No squeeze.  Did you wear a yellow dress?  No squeeze.  Did you wear a green dress?  Definitely got a good (correct!) squeeze from her!   So let’s try this again — I ask if she remembers that we were going to go on vacation, and used the same process to ask if we were going to California, Texas, or Cape Cod.  And again, she correctly answers “Cape Cod”.  All definitely good steps.  And so throughout the day, we’ve built up a small collection of hand movements — waving her hand means she wants us; a thumbs up or snap of the fingers (yep, she can do that too!) means “yes” or “I want that”; two fingers means she needs to make a “number two”; one finger means she wants me to go away and give her privacy while she tries to make a “number two”.  She is, of course, frustrated that she can’t express everything she wants, but at least we have a start.

And I received lots of one-fingers and finger-snaps today; so while she can’t talk yet, her sass is definitely still there.

And some more good news – the sedative has been further reduced, and the final cranial line (an “EVD”) was removed.  The next bite in eating this elephant is to reduce and eliminate the breathing machine and the breathing tube from her throat, and seeing how she does verbally.  This should begin over the next several days.  In parallel, we’ve also started working with PT and OT on some basics to work on muscle strength and dexterity.

We also discussed a bit more about the remaining elephant.  Based on the impact to the brain up to this point, we expect that Amber’s left arm and left leg will suffer some long-term (possibly permanent) impairment – both weakness and poor fine motor skills.  We also expect her to have poor, and possibly zero, left side vision (note – not left eye damage, but rather the left peripheral vision of each eye).  Of course, we will work hard with PT, OT, and whatever else we can to continue to improve over time.

And then, there is still a whale to be eaten too.  Once we stabilize her physical state (the elephant), we can begin treating the glioblastoma (the whale).  We got the report from Dr. Martin today that he met with the Tumor Review Board here at CCMC, and they have begun putting together the plan.  In a few weeks (three-ish), she will receive another MRI to confirm there has been no tumor regrowth.  Then, the “skull flap” (the piece removed during the original surgery) will be replaced.  After this, we can begin the first phase of cancer treatment – radiation therapy.

So, how do you eat an elephant and a whale?  Still, just one bite at a time.

A closing thought – my dad said something profound to me yesterday.  He has been praying for Amber, for her strength, for her recovery.  But yesterday morning he mentioned that he paused to add a “thank you” — Thank You God for the time we spent with Amber on Sunday, and more generally for her being a blessing in our life.  And so I would like to do the same here.  God, Thank You for blessing us with Amber, for giving us the time with this beautiful little girl, no matter how long or short it may be.  Thank You for the family you’ve given us, all of our beautiful children, and the time you’ve given us with them.  Thank You for the incredible family and friends that are supporting us through this process, and Thank You for the people at the Connecticut Children’s Medical Center who have been working so hard and been so kind to Amber and to us.  And Thank You for giving us hope that we can indeed eat this elephant, and this whale, one bite at a time.  And maybe still have room for an ice cream sundae at the end.