A couple more steps in the right direction.

We started the day with me (Matt) bringing Amber’s siblings to the St. Joseph road race in Baltic, CT. I’m very proud of Marie and Brianna for running so well. I’m also very thankful for all of our friends that asked about Amber and have been offering prayers for her, and pleased to hear from them today that this blog is helping everyone feel connected to Amber.

Caron stayed with Amber, and let me know that she (very briefly) opened her eyes several times, including once when the doctor stimulated her left leg (important because we know we will have challenges with her left side, due to her stroke). She also coughed several times today, an indication that she will be able to control her own breathing at some point. It’s still a very long road ahead of us, but we will celebrate each step in the right direction.

While there continue to be some minor hiccups in various numbers (ICP, Heart Rate, Blood Pressure, CO2, etc), things are overall trending positive there too. Generally, it’s just that Amber, in typical Amber fashion, doesn’t like being made to roll on her side a bit, or have her eyes checked, or have her nose suctioned – so she is giving us some sass by throwing off her numbers for a few minutes.

And we continue to be overwhelmed by the generosity of you all. The prayers, the kind messages, the cards, the gifts, the meals, the offers of help. We are blessed to have such good friends and family.

Tonight, Caron is taking the kids to the Easter Vigil Mass, and I hold my own vigil at Amber’s bedside as we have since we arrived. We reflect on the trial, sacrifice, and joy of Easter. And, we continue to pray that God grant Amber the strength to continue her forward progress, that He grant us the strength to carry as much of her burden as He will allow, and that He grant her caregivers here at the Medical Center the strength and clarity to continue advancing her in the right direction. And we pray in gratitude for all of you, for your families and friends, that you all enjoy a peaceful Easter.

God bless.

Today was … emotionally turbulent. All of these days have been, of course, but different highs and lows.

We had a good (but difficult) conversation with the team of doctors today. Yes, seeing a healthy brainstem and left side of brain is very good. But, the damage to the right side from the stroke will require much work. Amber will need to relearn how to do many things, and it will take much time. But fortunately, young brains have “plasticity”, and the rest of the brain looks good, so we have a chance, hope, that she will be able to relearn.

We also began the process of waking her. Today, we have stopped the paralytic medication, and watch how she responds. We are watching to see if she breathes on her own, coughs to clear her throat, performs involuntary motions (especially on the left side of her body, which is at risk due to the damage in the right brain ). It will be many days, though, before the other medications are lifted and we see her start to actually wake up.

So, again, there is hope. It will be a long, difficult road, but Caron and I will do whatever it takes to bring her through it. And we know that the medical team here are in this with us too.

We go into this Easter weekend praying. We pray for strength for Amber. We pray for the medical professionals providing her care. We pray for our own strength to carry as much of this for her as we can.

We truly appreciate the amazing support from our friends and family, across our work, church, school communities, who again today continue to show us such kindness. Thank you.

It was a quiet night. Amber continues to sleep peacefully, though she does get agitated (blood pressure, heart rate, cranial pressure) whenever the nurses move her into a different position. Today, we look for continued stability, so that we can look to start reducing additional therapies (monitors, tubes, sedation, paralytic).

Today we reflect on Good Friday, on Amber’s trial here, and continue to pray that God bless her and provide her comfort, and that He bless the doctors, nurses, and all the staff here that are working so hard to restore her health.

And, I am reminded today, in light of all of this, of just how quickly life changes. It was just a short two weeks ago today that I was bringing all three of my daughters to the Daddy/Daughter Dance at their school …

The night was pretty stable, some minor changes to her meds to manage the blood pressure. With that stability, this morning they removed the “bolt” (one of the monitors measuring her brain pressure [ICP]) and her drainage (hemovac), so she can go into the MRI this afternoon. She is comfortable. One step at a time, celebrate each small win. We are terrified of the potential results of the MRI, but we know it will only reveal the reality that has already existed, so this doesn’t change anything other than giving us a clearer view of what can be done to help her.

We continue to pray, asking God for this trial to pass quickly, to give us strength to carry Amber, and for Amber’s own strength to persevere through this.

We are truly blessed with the support and love being shown during this very difficult time. We are starting this blog for Amber to capture the moments, the details, the experiences of this journey and share with everyone – instead of trying to communicate different stuff via different methods to different people. We will try to update this daily, but please do not be concerned if we miss a day.

We have titled this blog Amber’s Way. We (Caron and Matt, her parents) are going to do everything in our power to bring Amber through this. But, those that know our little girl understand that Amber will shape her own path for this Journey, in Amber’s Way – with some attitude, with some sass, with hope, with a smirk.

Today is Wednesday March 28 2018. Most of the posts before this one are just excerpts from messages we had sent before we decided to do this as a blog. But, since they are part of this story, we decided to include them here.

(Email update to family Mar 27, recorded here Mar 28)

After the “excitement” of last night/early morning, today has been a very needed calming day, so to speak. Amber’s pressure numbers have been very very good (small but mighty wins) and her blood pressure has been a bit on the high side, however has been lower now for 1/2 the day (again, small but mighty wins).

Dr. Martin came in and liked the numbers he saw. Slow and steady wins the race.

We’re hopeful for a calm uneventful night.

Matt and I, as well as Amber can feel the flooding of prayers. Tomorrow night, at Saint Mary’s Church, some of the mothers at Saint Joseph’s school, along with Father Tito and Sister Patrick, coordinated a ceremony of healing for Amber!!! It is at 7:15pm.

(Message sent by email to family, close friends, and a few key individuals to communicate to school, work, etc on Mar 27, recorded to blog on Mar 28)

As we write this at 1:30 AM Tuesday (3/27) morning, the past 10 hours have been extra challenging for Amber. But she is again holding stable. Please, keep her in your thoughts and prayers, as we have a very difficult road ahead of us.

Monday (3/26) late afternoon, we received the results of the pathology report. The tumor was most likely an aggressive glioma (specifically, “glioblastoma”), which is not good. There is hope, but we have a long road ahead as we consider options for recovery.

Following this information, a CT scan was performed as a precaution and revealed that blood was not properly flowing to the right side of her brain, due to ongoing swelling of the brain from the tumor and it’s removal on Thursday (Mar 22). It was decided necessary to immediately go in for another surgery to reduce pressure by removing additional tissue from the brain.

This surgery started at 9:15 PM Monday night, and continued until a little after midnight. It was successful in reducing pressure and restoring blood flow. Her siblings were able to visit shortly after.

Now, we spend the next 3-4 days watching to make sure she remains stable, and meeting with different types of doctors to discuss possible next steps. If she does remain stable, we begin with an MRI to get a real detailed look at the state of things, and determine the appropriate path from there. We look forward to the point that she can begin waking from the sedation.

Please understand that this is pretty much all we know at the moment. We are sure you all have questions, and we probably have the same questions. But right now, we are very much focused on 24 hours at a time as that is about all we can fathom.

We truly appreciate all of the prayers and thoughts for Amber. Please keep them coming strong, as she will need all the help she can get for this journey.

We have great faith in the staff at the Connecticut Children’s Medical Center to do everything they can for Amber; and we have great Faith that God will do what is best for her.

(Email update to family on Mar 26, recorded to blog on Mar 28)

Met with Dr. Martin this morning. He has postponed her MRI until tomorrow, as long as the pressures (ICP) stay in the teens. They have been frequently peaking in the twenties, higher than they would like which means he’s not ready for the monitor itself to come out. You can’t do an MRI with the monitor in. So, they are increasing the sodium solution to help the internal swelling come down, reducing the ICP.

We’ll meet later today with Dr Martin to discuss pathology report … so extremely nervous…

(Email update to family Mar 25, recorded here on Mar 28)

Amber continues to be stable, and still under heavy sedation. Her head pressures are still up and down…but should be going down more. So everyone is keeping a watchful eye on it. They introduced a sodium based medicine to help draw out the extra fluid, which seems to be helping.

Dr. Paul came in and removed the drain in her head. He decided to hold off on lowering her sedation.

Matt mentioned Mark’s meningioma and Aunt Phyllis’s grandson’s glioma. He said they are probably nothing syndromatic but that may be something to discuss in the future with our pediatrician — possibly getting the other kiddos scanned.

Uncle Mark & Auntie Meg stopped by to just drop off a very well thought out care package!!! Thank you again guys!!!

Father Tito stopped by to give Amber the Annointing of the sick as well as a blessed brown scapular.

Talked with Sister Patrick and gave her the run down. She plans to write a letter to the families of St. Joe’s regarding Amber. She is also going to personally speak with all the classes (as one of the hats she wears is music teacher). She told us that there had been 2 miracles in the convent…and she is hoping Amber recovering is the 3rd. She also mentioned all the nuns/Sisters are praying for Amber as well as all the different prayer groups and Church groups that have Amber on their lists.

The outpouring of love…the support, prayers, the positive vibes… I just don’t have words. Not only are our families praying but the parents and children from school… friends… co-workers…friends of friends and siblings of people we know… people that haven’t even met Amber — are offering up masses and novenas and prayers circles and lists at churches… Matt and I are just overwhelmed by all the love.

I feel so sad and helpless… but this outpouring of support for our little girl — THAT makes my heart feel such warmth and hopefulness.

So much love to you all.

Tomorrow is the big day. I wish I didn’t have to face it because I am so scared of the results…

Will touch base tomorrow.