After a restful night and a yummy well deserved breakfast of Cinnamon Toast Crunch, Amber was ready to tackle the day.

Our fill-in Physical Therapist was Ms. Sue. Ms. Sue had never had Amber before so she was taking it very careful, very gingerly with her. However at one point when Sue asked if Amber could try to stand up, and Amber did — tall and firm, Ms. Sue could now see that Amber was no delicate flower. And with that, the two of them went off, slowly but surely, down the hall, walker and Ms. Sue helping, for a total distance of around 50 feet!

Amber also got to enjoy some fresh Spring air outside today as well. The best part of being outside though? Amber didn’t have to wear her “stinkin” helmet!!!! She calls it that because it’s been nothing but problems and quite uncomfortable from the start. And what has Amber been telling everyone what she plans to do with that “stinkin'” helmet when she gets home? “I want Daddy to run it over with his truck and then I want to throw it in the fire pit”!

Thatta Girl!

Amber and I had a low key day. We watched some Minecraft videos, I cut the huge mat out of her hair, I painted her nails and she painted mine, we took a field trip around Floor 8, tried to play XBox Football in the playroom (that was hilarious), read a couple pages of Superkids (as we snuggled in her bed), and then watched more Minecraft videos (yay). Very relaxing and uneventful, which is nice given what’s coming up in the week ahead.

However, there was something extra meaningful later on this evening. At 7PM, Amber and I were praying extra hard. We knew at this moment, and for the next hour, there was something very special happening — St. Mary’s Church in Baltic, our Church, was having an hour-long prayer service in honor of her, and because of that we wanted to make sure we prayed right along with everyone else.

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(Added by Matt)

At 7:00 tonight, the kids and I attended the prayer service at St Mary’s in Baltic. It was a simple, peaceful hour of music and quiet prayer. But it was powerful, and overwhelming for me to see all the support. Thank you to everyone who attended, participated, and prayed with us.

When I returned to the hospital to be with Amber for the night, the nurses were working to put in an IV. Sadly, Amber’s poor veins have been through a lot over that past 6 weeks and didn’t want to cooperate. It took several very painful attempts, before having to give up and agree to use a gas sedative tomorrow morning and install the IV then. Watching Amber cry in pain was heart wrenching, knowing that I cannot take this pain for her really tears me up inside.

Caron pointed something out to me tonight. Tomorrow is day 40. This has been 40 days of suffering for Amber. I don’t know if I should draw deeper meaning from this, but I felt it was worth noting anyway.

So now we look to tomorrow’s MRI scan. The scan doesn’t change anything, it doesn’t change our risks. It just reveals what is already reality. We will get the results on Tuesday. So tonight, we pray for the strength to accept whatever the MRI shows, we pray that God grant Amber a path to health, and we pray that God grant Amber peace and comfort during this journey.

The weekends tend to be a bit quieter for Amber and for the hospital in general. A little PT with a fill-in for Ms. Lauren named Ms. Heather, a student nurse from Quinnipiac named Catherine (which was easy to remember since that’s Amber’s best friend’s name) hung out with us, and a lovely field trip outside, was basically the schedule of the day.

One of the reasons I love Saturdays, is because it’s Church day. I have grown to love our little routine of getting out to Mass while Amber is cared for by a family member. This Saturday though, Matt was back home with the kiddos so I asked my parents, a.k.a. Mem and Pep (to their grandchildren), if they would like to come hang out. Pep offered to gladly stay with Amber while Mem and I enjoyed the beautiful weather during our 10 minute walk to Father Charlie’s Church, Holy Trinity Mission Church.

I’ve always enjoyed going to church, but lately it means so much more. It’s the spiritual need to go. My soul just feels so good, so cleansed and refreshed. Under the recent circumstances, there’s been a sort of spiritual shift, a deepening with my relationship with God, Mary, and Jesus. They’ve done so much and I look forward to officially “thanking them” at Mass each week.

There were a few things that stood out to me at Mass this evening:

When I opened up the missilet to where they placed the weekly bulletin, the front page made me ponder a bit. Right there, with a beautiful picture of a field during sunrise (or sunset), was the title: 5th Sunday of Easter, which made me think of Amber’s 5th Sunday in the hospital. After everything Jesus went through to get to his peace, I can only pray that Amber finds her peace as well.

Father Charlie was telling us about an interview with a woman on the news recently. When the reporter asked her what she thought about the convicted killer that went to jail, her response was clever, witty, and meaningful, she said “I am too blessed to be stressed”. For most of us, that is so true. But there are people, take Hartford for instance, that don’t have shelter, or food or clothing and that aren’t necessarily “blessed”. Yes, Matt and I are going through a rough patch with Amber’s health but ultimately, we are blessed. Blessed to have the means to be with Amber during this terrible time; great support systems that help us with the other children, great co-workers that help take the load off Matt, great hospital care to help Amber thrive, great insurance to help offset the cost, great family friends and aquaintences to help pray for Amber — and the list just keeps going. At times life right now feels out of control, but it could be a lot worse. All we have to do is look around and realize, we’re too blessed to be stressed.

During Mass, when saying the prayers, I looked down in the pew in front of me and saw that the woman left her book opened to the song that would be sung in a few minutes. I read the title, and again pondered its words: ‘Be Not Afraid’. A beautiful song that I always look forward to hearing my daughter Brianna sing in her choir at school and our Church. The words struck me as more meaningful this evening though, more like an answer to my growing intrepidation of the next few days’ worth of fears . . . ‘Be Not Afraid‘ — ‘I am with you through it all’ . . .

Apparently, for Amber, standing just wasn’t good enough. She told Ms. Lauren and Ms. Caitlin at PT/OT today that she wanted to walk, and walk, she did.

Amber was sitting in her wheelchair, Ms. Lauren in front of her and Ms. Caitlin on the side of her. With all the practice yesterday, Amber was able to go from sitting to standing; almost with ease. With Ms. Lauren instructing her, she takes a step with her good foot, her right foot. Next is harder, but Amber is determined, and with some aid from Ms. Lauren, she brings that sleepy left leg and foot forward and takes a step. Then her right. Then her left . . . tiny but mighty. As Amber takes these steps, you can see the strength, the purpose, of all this hard work. She knows that if she continues to get strong, she can get out of this hospital and finally go home. Amber walked about 3 feet to her end destination, me, where I was kissing and praising her like only a proud Mama could do! Later on, she walked even further, with her end destination being her bed and by that point she was clearly exhausted — but not too exhausted because she was able to muster that last bit of energy to crawl into bed!

Tomorrow is a big day for CCMC. It’s the annual Superhero Day ! However, I believe that Superhero Day came a bit early. I believe we just saw a Superhero at her finest, today . . . and honestly, almost every day now, there’s been something worth celebrating by this Supergirl!

After a bit of a rough start to the morning — Amber threw her breakfast and supplemental feed up (her sibs shared some type of coughing/mucus germ) . . . She persevered. PT with Lauren and crew showed us just how bad Amber wants out of here. Not only did she kneel in a high kneel position (and at some points unsupported), she STOOD UP to stand against her bed with Lauren and Shannon supporting her! Yes, stood up and stayed that way for a few minutes!!! After that, after all that hard work, she literally crawled up into bed!!!

* SUPER AMBER GRACE!!!! *

Once situated back in bed, Amber had a lovely visit from a Volunteer named Michelle and her 14 year young dog named Carina. Carina got in bed with Amber and Amber was in her glory!

After some lunch of mac and cheese and spinach (still on a spinach kick — getting strong from it (and it’s obviously working!)), and bit of chocolate munchkin for dessert, it was time to go outside for some Vitamin D.

Little miracles and blessings everyday. Thank you God, Mary, and Jesus — Amber’s strength is heightened by you. And thanks to you; our families, friends, aquaintences, and even kind folks that don’t even know us (officially anyway) — your prayers and positive thoughts . . . we feel them! Our love to you all! 💜

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Today was a busy day. After attempting some (almost) 5 week old homework, Amber had a small speech therapy with a fill-in for Sara named Kiersten during breakfast.

Then Dr. Catie came in and removed the remaining stitches and staples.

We had PT down on Floor 5, and were able to see Amber swing. When she was sitting there she had her feet on the floor and was swinging the swing on her own, even her left leg and foot were helping a little! Then we got on the floor in a high kneel and pushed and pulled a big ball back and forth 5 times!

After that we had a nice visit with Grammy and Grammy back at her room. They brought up the Relic of the True Cross from Saint Patrick’s Cathedral where we said a couple beautiful prayers with Amber before her lunch. During the prayers, while Amber was in the wheelchair, I noticed she was struggling with her right hand to get her left arm and hand on to the top of her tray. I went over and helped place her left arm and hand there for her. I was thinking she was uncomfortable with it being on her lap, but no, that’s not what it was. As soon as I did that for her, she promptly takes her right hand and feeds those fingers through the non-responsive left fingers so that she could properly pray (out loud) those prayers with folded hands. That — that was tough. I choked out the last of the prayers and went to the opposite corner of the room to cry and try to put myself back together. Remember my post from a couple days ago about her. . . innocence and sweetness, yeah, same exact feeling going through me again. These moments are tremendously pure, but utterly heart wrenching.

After going outside to blow bubbles and eat some diced peaches, Grammy and Grampy said their goodbyes and Amber and I went back to her room where she took a much needed nap.

After said nap which lasted about a half hour, Caitlin from OT was ready for her. Down to Floor 6 we went to the little gym. Caitlin had Amber on the mat sitting playing a Grilling Game. At a couple points, Amber was sitting unsupported! She was able to do that all by herself while keeping her neck strong! Then she pushed and pulled a big ball a few times in a high kneel.

Her “button” (G-Tube) is still really bothering her which I feel like is delaying her with forward moving therapies. I think she’d be willing and wanting to do so much more if it wasn’t for the pain and soreness of the G-Tube.

All in all though, a good day for Amber, whose so unbelievably strong & tough!

As Matt noted reading this post before I published it – this post is a rollercoaster, just like the journey we are on.

Day 31 . . .

I can’t believe we are on day 31. On one hand, it’s all been a blur because I can’t believe we are already on day 31. However, my mind, body, energy, and even my spirit, are just exhausted . . . because it’s been 31 days. That’s me. So how does Amber feel? Her mind, body, energy, and most likely her spirit, are different; injured; foreign. My poor baby girl, this must be all too much for her. And all she wants to do is just go home. We tell her it’s only a couple more weeks, but is it? Are we all just naive and optimistic, when we really shouldn’t be? I’m trying to be hopeful in all this but it is truly hard. For me, it’s the unknown that’s defeating me and bringing me down.

I try not to use the word “hate” because it’s ugly. But I hate this situation so much. I hate seeing Amber suffer. I hate seeing the kids on her floor, Floor 8 (The Cancer Ward) suffering, and I hate for all kids in this hospital to be suffering. Kids are innocent, and this should NOT be happening to them. It’s just not right.

Amber’s been in pain after having the G-Tube put in but I have to chuckle because no matter how much discomfort she’s in, she is so darn polite! She’s cying from being jostled around and she still says her pleases and thank you’s to us and the nurses. I laugh because it’s cute but inside my heart it breaks. It breaks for her innocence and sweetness. And as I write this, I cry . . . because it’s just not right. It should be me in her place, not her.

There is so much to worry about and I’m trying not to let it consume me, but it’s really tough.

Thank God for Matt. My rock, my heart, my partner and my love. When I feel down he picks me up. I honestly couldn’t ask for a more perfect partner to be by my side during this topsey-turvey nightmare. He gives me strength when I need it so that I can have that extra strength for Amber; for our children; for him. Him and I, we’ve got this — together, as a team with Amber. God, I thank you for him; for them.

I wasn’t sure if she’d ever be able to speak again. It was a fear that ran through my mind constantly these past 3 1/2 weeks. It was possible right? I mean she had an unknown tumor that burst which caused a major stroke and 2 brain surgeries. So the possibility of not speaking again (among other fears) was right up there on my list of possible outcomes from all this.

I can tell you in fact that Amber has the voice of an angel. It is soft, sweet, gentle, and. . . well, angelic. It’s hers, it’s our Amber’s, and I will forever thank God for it.

Last night Amber told me that she misses home. I can’t blame her. I can’t even begin to imagine everything she has and is going through and how absolutely terrifying it must be for her. “What do you miss most about home?” I ask. She starts to cry. . . “Rea” she says. Rea is our 16 1/2 year old cat and Amber’s buddy.

This morning Amber says “I want to go home…” I cringe a little because I know what’s coming next. “Why do you want to go home?” I ask. “Because I want to do my homework”. That response completely sideswipes me!! Ha Ha!! Does she really maturely understand enough to put the fact of how long she’s been in here with how much school she’s missed which results in just how much work she needs to make up? Perhaps so.

Her G-Tube spot is still sore, especially when Lauren from PT got her in and out of beds, wheelchairs, and floor mats. We got to do PT down on the 6th floor where their gym is. On the wall in there it says “Super Heroes in Training”. Ain’t that the truth!

After a shower, Amber was exhausted but stayed awake enough to enjoy her 1st lunch tray meal! After some bites of Mac and Cheese, carrots, and chicken, she washed it all down with apple juice from a straw! She did so well that she has advanced to 3 soft food meals a day AND soft snacks and clear liquids with Matt or I!!!

I have to say that I am in awe of Amber Grace. She is so brave and so tough. I cannot thank God enough for her and for her being here with us today. I also cannot thank you all enough for your continued prayers, love, and support through this tumultuous journey. It helps us more than you will ever know. . . 💜

Amber’s G-Tube placement was a success. She was in a bit of discomfort during the night and a bit of today. However, the more annoying thing that bothered her today was wearing her helmet — which aggravated her healing (and very itchy) scalp.

After some OT on the mat that consisted of playing Legos and Squigz with our fill-in therapist Erin, Amber ended the session in her chair. She did well in the chair for a while. . . but that poor itchy scalp, being contained in a warm stifling helmet, was not making Amber a happy camper anymore. Once back in bed, helmetless, with a very much needed gentle head massage, and then cold damp facecloth, Amber was back to her content self.

A few hours later it was time for PT and ST together. The therapists were surprised and amazed by Amber’s words and communication! Amber went down with Lauren on the floor mat and worked on building her neck muscles. Lauren seemed pleasantly surprised at Amber’s controlled neck movements; an improvement since Friday. After some more PT, it was time for ST. Sara asked the question Amber has been waiting to hear since Saturday. . . “Amber are you hungry?”. Her eyes lit up with a big nod. But Sara wasn’t letting her off the hook “You have to tell me Amber, are you hungry?”. . . Amber looks at Sara, starts to nod again but catches it, “Yes!”. Sara gives her a list of items she can choose from and Amber settles on “Vanilla Pudding”. Next question was if she wanted something to drink. “Yes”. Amber chose “Apple Juice”.

After Sara came back with the items, she had Amber begin with the pudding. Sara took a spoonful, and Amber took a bite. Sara scooped up another spoonful and asked if Amber could feed it to herself. A head nod and “Yes”, so Sara hands it to Amber who proceeds to give herself a proper bite. Like, a direct hit into her mouth bite! After a few more like this Sara thinks out loud saying “I wonder if we should try Graham Crackers? Amber do you like Graham Crackers?”. Amber nods and says “Yes”. I run and grab some Graham Crackers and hand them to Sara. While Sara breaks off a piece she reminds Amber not to shove the whole thing in her mouth — and she doesn’t. Amber takes a perfect Amber-sized bite, chews it and swallows. Takes another bite, chews and swallows. Now if I wasn’t Amber’s mom and didn’t know the backstory of the fact that Amber hasn’t had solid food now for 27 days, I’d think this is just another healthy kid having a plain old typical snack. What she did was so effortless!

Rockstar. That’s what they all called Amber. After the Graham Crackers was Apple Juice, which Sara started off using a spoon for but by the end Amber was sipping from the cup. After some sips and a cough, she had some more. Then, she was done. . . She pointed to the bed and told them she was “tired”. She did well, really well. The girl deserves a break!

All I can say is, that’s my girl, that’s my Rockstar! Sara said that she is ready to try a lunch tray meal tomorrow!! Bring it on!!

So many blessings and miracles and happiness for Amber (and us). God is Good.

Amber did a whole lotta nothing today, and that’s okay. The way this girl has been working hard this past week, a day of rest was very much earned and well deserved.

A little bit of talking, a little bit of writing, a little visiting, a little TV watching, and a little bit of coloring was about the extent of the day.

A day of relaxing is very much needed to prepare for the week ahead, starting with the biggest upcoming event, insertion of G-tube & removal of staples and stitches in the head tomorrow.

If you don’t mind, extra prayers for Amber’s surgery tomorrow would be very much appreciated!! Thank you everyone!! 💜