Saturday, April 30, 2016
Friday, April 29, 2016
A Good Day
We started this day by dropping Sawyer off with Granny and Granddad so they could take him to school because we had to take Dempsey to his first Clinic appointment for a lab draw. I was particularly terrified of this event because I watched them change is "dressing" (line into his port) and it was awful. I wrote about it in a previous post.
Here is Little Dude sitting in the waiting room, playing a new Spiderman app Jake put on his phone for such a time as this.
Here are my guys post procedure. It was a perfect experience. There was just a tiny bit of pain for Dempsey but it was super short-lived and the whole experience went smoothly. This gave me courage and a bit of empowerment for the MANY appointments he will have like this one.
Here Dempsey is giving the thumbs up because he is eating exactly what he's been talking about for 24 hours! A burger with KETCHUP, chips and soda. Don't worry, we're watching his sodium intake.
It started with Jake pulling Demps and ended like this. Short stints outside are approved and necessary for health on many fronts. Then and immediate application of sanitizer or hand washing.
Coloring with a few of the MANY wonderful gifts he was blessed with.
Post bath shot of his "site". Currently it looks like a third nipple because it was accessed today and is red as a result. The dark link right above it is the incision site and the lighter red is adhesive with red shirt fuzz, I think.
Grateful. Just grateful. No words can describe how much.
Sawyer reading Jungle Book to us. It's his favorite book right now. Don't think he's sold on the recent movie's trailer.
Jake the mixologist is med mixin' for the boy. Holy orange bottles, Batman! *insert image of wads of cash flying away... far away*
This is what "drops time" look like. Twice a day Dempsey needs to have drops put in his ears.
There you have it. A look at our life for today. I say "for today" because we are well aware that tomorrow could bring a plethora of other realities.
Please continue to pray for our boy, our other boy, and us. We know your prayers are being answered and we want to let you know that so you don't feel like they're not working. We love you and are grateful for each and every one of you.
Meal Train
Our lovely friend Ellen set up a Meal Train for us. If you have been interested in providing a meal, this is a great way to do it.
These meals will help make life just that much easier for us as we figure out a new at-home routine.
If you've never heard of or used Meal Train just follow this link: https://www.mealtrain.com/trains/g0enrm
Thursday, April 28, 2016
Overwhelming
Finishing up the first 24 hours back at home.
It's strange.
So many details for this leukemia journey. So many responsibilities that CANNOT be missed or delegated. So many doctors who each play an important role in our lives now. So many phone numbers and names to log. So many people to thank for their support. So many questions still ahead. So many ugly things in Dempsey's future. So many prayers being answered. So many prayers yet to be answered how we want. So many...
It's one thing to make changes for yourself willingly. It's another thing entirely to have them thrust upon you with zero possibility of dismissal. You MUST change. Trying so hard to not get depressed about that reality. This life is all about perspective. So, instead of the poor me stance I am working to choose a why not me stance. The first stance is selfish, inward focused, dark, full of short-coming. The second, however, is full of strength, determination, faith, impact, and adventure. Now, it's a challenge to remain in the why not me mode when you're tired, hungry, scared, hurting, frustrated, sad, etc. Thankfully we serve a BIG GOD.
God is for us. He knew Dempsey was destined for this journey and he chose me to be his mama, and this family to walk this journey with him. So, that tells me God knew I (we) could handle it. There is power in knowing God thinks you're capable. If you aren't tapped into that power, it is worth considering.
It's strange.
So many details for this leukemia journey. So many responsibilities that CANNOT be missed or delegated. So many doctors who each play an important role in our lives now. So many phone numbers and names to log. So many people to thank for their support. So many questions still ahead. So many ugly things in Dempsey's future. So many prayers being answered. So many prayers yet to be answered how we want. So many...
It's one thing to make changes for yourself willingly. It's another thing entirely to have them thrust upon you with zero possibility of dismissal. You MUST change. Trying so hard to not get depressed about that reality. This life is all about perspective. So, instead of the poor me stance I am working to choose a why not me stance. The first stance is selfish, inward focused, dark, full of short-coming. The second, however, is full of strength, determination, faith, impact, and adventure. Now, it's a challenge to remain in the why not me mode when you're tired, hungry, scared, hurting, frustrated, sad, etc. Thankfully we serve a BIG GOD.
God is for us. He knew Dempsey was destined for this journey and he chose me to be his mama, and this family to walk this journey with him. So, that tells me God knew I (we) could handle it. There is power in knowing God thinks you're capable. If you aren't tapped into that power, it is worth considering.
Night #1- A Success
We did it! Dempsey did it! Our family survived night #1 at home. Praise God, for he is good.
Sawyer woke up first. I heard him in the bathroom and then listened as he went and handled the cat stuffs- food, water, litter box. He started loving on Lakota (white kitty) and the kitty got a little mouthy. That's when I got out of bed so I could shut my bedroom door and allow Jake to keep sleeping. Sawyer read for a little while. Then I heard Dempsey call "Daddy." So I quickly made my way to his room in the hopes that Jake wouldn't wake. It didn't work. When I got to Dempsey in his room he proudly told me he just finished going pee (in the makeshift urinal by his bed). He grabbed his blanket and "Batwing" (a Batman figure with wings). I scooped him up and carried him to the living room where Sawyer was waiting. It was a lovely round of "Good morning, Sawyer- Good morning, Dempsey."
I made our normal NeoLife protein shakes for breakfast. Feels so good to pull on that familiar life thread.
Now the boys are watching some Batman and Friends that was gifted to them recently. Lots of boy sounds make this mama's heart so happy.
Today is an easy day. No appointments. No line accessing. Just rest and getting reacquainted with life at home. Oh, and some grocery shopping.
Sawyer woke up first. I heard him in the bathroom and then listened as he went and handled the cat stuffs- food, water, litter box. He started loving on Lakota (white kitty) and the kitty got a little mouthy. That's when I got out of bed so I could shut my bedroom door and allow Jake to keep sleeping. Sawyer read for a little while. Then I heard Dempsey call "Daddy." So I quickly made my way to his room in the hopes that Jake wouldn't wake. It didn't work. When I got to Dempsey in his room he proudly told me he just finished going pee (in the makeshift urinal by his bed). He grabbed his blanket and "Batwing" (a Batman figure with wings). I scooped him up and carried him to the living room where Sawyer was waiting. It was a lovely round of "Good morning, Sawyer- Good morning, Dempsey."
I made our normal NeoLife protein shakes for breakfast. Feels so good to pull on that familiar life thread.
Now the boys are watching some Batman and Friends that was gifted to them recently. Lots of boy sounds make this mama's heart so happy.
Today is an easy day. No appointments. No line accessing. Just rest and getting reacquainted with life at home. Oh, and some grocery shopping.
Wednesday, April 27, 2016
Yes, He's Home... But...
Yes, Dempsey is, in fact, home. Praise the Lord!! He is currently taking up space on our couch partaking of Wall-E. It is a beautiful thing. We are grateful to God for this provision and for bringing Dempsey to this place from the pit of despair we fell into on April 3rd.
On the drive home Little Dude said "I like being free from hospitals." Us too, kid. Us too.
He is really missing brother, too. Every 5 minutes Dempsey asks "So, when is Sawyer going to come?" I'm trying to be gracious in my answering but it's hard when he has no concept of time. Sawyer, bless his heart, is having fun with friends right now. He will return home later this evening, post-dinner. I love that Dempsey misses Sawyer because it means he loves him.
So, we're home. However, things are nowhere near back to normal. Dempsey cannot walk unassisted right now. His legs have sadly (and temporarily) lost muscle mass and strength. Right now he can hear neighbor friends playing in their backyard and he can't go play with them like normal. He told me "I miss Mikey and Bee." It breaks my heart that he has to remain in this bubble and make do with life this way. We know this is temporary but it doesn't make the right now any easier. We will most likely create a makeshift urinal for his bedside during night time so that he can handle going pee by himself. We feel that he would be able to make that work with little chance of getting hurt or frustrated. He is able to stand and lean against his bed and climb back in- which is more about leaning strategically than actually climbing. He can't dress himself right now either. It takes more strength and coordination than he has at present. Again, this is temporary but it is a painful reminder of the vitality he embodied just a few short weeks ago. We have a ways to go to reach normal again, but we will... HE WILL.
We will have LOTS of doctors appointments. It's overwhelming when I think about just how many, so I try not to do that. Just one week at a time. One day at a time. This is super hard for the planner in me! It gets worse when I think about what all those appointments mean for Dempsey. Some require anesthesia. Most require "accessing his port"- this is where they stab him with that needle to draw blood, give chemo, trans/infuse.
Visitors will be kept to a minimum simply for his safety. Rest assured, we love you all! We wish everyone could come party at Kenagyville but that is just not possible. We must be super selective with our germ friends for awhile. His body recognizes our germ family here but germ friends his body isn't as familiar with, as loving as they are, pose a very real threat. Please bear with us during this time. It will take a long time before you see Dempsey at Target or church.
Communication is open, alive, and welcomed. Please do not feel that you need to watch/ read from a distance. You can call. You can email. You can text. You can remain at a distance. For me (Coral) communication is a good and therapeutic thing. If I don't respond right away I will respond when I can. If I don't have the answers to your questions I will tell you. I've never been afraid of saying "I don't know the answer to that right now but I can try to find out."
We are still in the process of figuring out the how to acquire this special tricycle for Dempsey. A wise contact suggested we speak to our CHOC social worker and see if this couldn't be fulfilled through our insurance, or at least partially paid for by insurance. I left a message for our social worker and am waiting to hear back. Meanwhile, I have filled out and submitted the forms needed for the organization who helps families get these trikes. The cost is up there. The need is valid. The case has been made.
Needs:
We love you! We value you! We need you! We pray for you! We give thanks to God for you!
On the drive home Little Dude said "I like being free from hospitals." Us too, kid. Us too.
He is really missing brother, too. Every 5 minutes Dempsey asks "So, when is Sawyer going to come?" I'm trying to be gracious in my answering but it's hard when he has no concept of time. Sawyer, bless his heart, is having fun with friends right now. He will return home later this evening, post-dinner. I love that Dempsey misses Sawyer because it means he loves him.
So, we're home. However, things are nowhere near back to normal. Dempsey cannot walk unassisted right now. His legs have sadly (and temporarily) lost muscle mass and strength. Right now he can hear neighbor friends playing in their backyard and he can't go play with them like normal. He told me "I miss Mikey and Bee." It breaks my heart that he has to remain in this bubble and make do with life this way. We know this is temporary but it doesn't make the right now any easier. We will most likely create a makeshift urinal for his bedside during night time so that he can handle going pee by himself. We feel that he would be able to make that work with little chance of getting hurt or frustrated. He is able to stand and lean against his bed and climb back in- which is more about leaning strategically than actually climbing. He can't dress himself right now either. It takes more strength and coordination than he has at present. Again, this is temporary but it is a painful reminder of the vitality he embodied just a few short weeks ago. We have a ways to go to reach normal again, but we will... HE WILL.
We will have LOTS of doctors appointments. It's overwhelming when I think about just how many, so I try not to do that. Just one week at a time. One day at a time. This is super hard for the planner in me! It gets worse when I think about what all those appointments mean for Dempsey. Some require anesthesia. Most require "accessing his port"- this is where they stab him with that needle to draw blood, give chemo, trans/infuse.
Visitors will be kept to a minimum simply for his safety. Rest assured, we love you all! We wish everyone could come party at Kenagyville but that is just not possible. We must be super selective with our germ friends for awhile. His body recognizes our germ family here but germ friends his body isn't as familiar with, as loving as they are, pose a very real threat. Please bear with us during this time. It will take a long time before you see Dempsey at Target or church.
Communication is open, alive, and welcomed. Please do not feel that you need to watch/ read from a distance. You can call. You can email. You can text. You can remain at a distance. For me (Coral) communication is a good and therapeutic thing. If I don't respond right away I will respond when I can. If I don't have the answers to your questions I will tell you. I've never been afraid of saying "I don't know the answer to that right now but I can try to find out."
We are still in the process of figuring out the how to acquire this special tricycle for Dempsey. A wise contact suggested we speak to our CHOC social worker and see if this couldn't be fulfilled through our insurance, or at least partially paid for by insurance. I left a message for our social worker and am waiting to hear back. Meanwhile, I have filled out and submitted the forms needed for the organization who helps families get these trikes. The cost is up there. The need is valid. The case has been made.
Needs:
- PRAYER
Pray against fevers
Pray against infections
Pray against frustration
Pray for increased strength and mobility
Pray for courage
Pray against pain/ discomfort
Pray against negative side effects
Pray for health and vitality
Pray for higher ANC levels that maintain
Pray for our strength as parents
Pray for our marriage
Pray protection over Sawyer (all facets of life and person)
Pray that family and friends would understand the new normal
Pray for continued support
Pray that we will always be salt and light to this new world we are a part of
Pray that hearts will be touched by Dempsey's journey
Pray that we can always keep a hope-filled perspective
Pray that insurance and the financial elements of this journey fall in line without hiccups or crazy drama
Pray that we would be wise and discerning regarding the administrative side of this journey- organized, on top of things - Meals
It would be wonderful if we could get 2-3 homemade, organic meals per week. We were thinking those would be particularly helpful on days we have an appointment for Dempsey. If you are interested in coordinating this please visit the Got Questions? post, fill out the form, and I will get in touch with you. - A short list of personal assistants
Ex: someone to recycle our bottles/ cans, run errands for us (grocery, etc), someone to sit with Dempsey & Sawyer so Jake and I can have a date.
If you want to be on this list, please visit the Got Questions? post, fill out the form, and I will get in touch with you.
We love you! We value you! We need you! We pray for you! We give thanks to God for you!
Grateful for Medical Staffers
Before I go to bed, I wanted to take some minutes and type out my gratitude for the medical staff we have have been surrounded by.
They work 'round the clock in 12 hr shifts. Shift change occurs around 7:30am/pm. Pray for these angels. They are the ones who willingly take the brunt of so many negative, yet valid, emotions from patients and their loved ones. I can see how it would be easy to take them each for granted or treat them as your servants instead of seeing them as loving individuals whose goal is to support the patient (and loved ones) to the best of their ability and get them the heck off the floor or out of the CHOC world. That last bit means get the patient healthy.
I am so grateful that there are women and men who have answered the call to fill these positions. It's not an easy job. There are those that love their patients as if they were family. Those are the ones that go home after a tough shift and breakdown because they've had to hold it in all day to show strength and hope to people. Those are also the ones that celebrate the joys and smallest victories with their patients as well because they know EVERYTHING hangs on those small wins.
The CAs (clinical assistants) are some of my favorite people on this floor. They get the not-so-fun jobs of logging and cleaning the patients output (a.k.a. pee and poo). They are marvelous people who work to make our son laugh, offer him help, always offer to get us whatever we need, etc. They make the beds, bring us linens and supplies for bath time, and come when we push the little red button (it works like the Batphone). One of our recent ones, Felix, even fancifies the bed sheets! I learned today that he used to work in a hotel prior to working this position. Assuming Ivan is stringing us along, I can believe Felix worked in a hotel. How? Because he folded the sheets in an artsy way. I jokingly told Ivan today that I felt gipped because we didn't get any swan-shaped towels. He chuckled.
The nurses are all incredible. Not once have I felt we were getting substandard care. It's especially amazing when my friend's cousin, Katie, stopped by early on in our stay to introduce herself, say hello, and pray with me before she left. God's provision for sure. She has since been our nurse and not been our nurse but stops by almost every shift she has to check in on Dempsey (and us). Each of the nurses we've had have stopped by at least once when we weren't their patient. They just care for Dempsey that much.
The doctors have a super tough job. They are in charge of the treatment plan and execution for these precious bodies. That cannot be easy. It is hard to see people younger than myself in charge of my baby's care, not gonna lie. Sometimes I wonder if people who don't have kids can fully respect what it is to be in our shoes. I doubt it. But I know they are part of a BIG team that does have people who have been where we are, or have been around it long enough to "get it". No one person is calling all the shots. That is a good thing. There is a lot of input from many specialists going into formulating Dempsey's treatment. Sometimes this means getting answers takes a little longer... many opinions to coordinate. Again, though, they have all been professional and we extend grace to the newbies who are learning from seasoned professionals at this marvelous teaching hospital.
Child Life professionals are some of our favorites. The services and support they provide are vital to the success of care. They entertain, educate, counsel, sit with, encourage, and so much more. We know Ashley best. This amazing woman not only devotes time, energy, emotion into our family and many others, but she also has a daughter with many health challenges of her own. That little 7 month old baby has had several surgeries and a prognosis that is hopeful but not "normal". Yet, here her mother is handling her special care like a boss while helping so many other families walk their own tedious tight ropes.
I'm telling you, we were meant to be at CHOC. Not a day goes by that I think otherwise. Please join us in praying for these marvelous creatures. Pray for their hearts, minds, bodies, families, etc. Pray that they may feel our gratitude even when we forget to voice it. Pray our room is always a safe place for them to find respite and joy. Pray that our family can point them all to Christ. Pray that their needs are being met and they are blessed beyond reason. We would not have the story we currently have without them. We are GRATEFUL! We are blessed and we know it.
*Disclaimer: I shouldn't name names because I don't want people to feel left out. Just know we love each and every staff member we have me so far.
They work 'round the clock in 12 hr shifts. Shift change occurs around 7:30am/pm. Pray for these angels. They are the ones who willingly take the brunt of so many negative, yet valid, emotions from patients and their loved ones. I can see how it would be easy to take them each for granted or treat them as your servants instead of seeing them as loving individuals whose goal is to support the patient (and loved ones) to the best of their ability and get them the heck off the floor or out of the CHOC world. That last bit means get the patient healthy.
I am so grateful that there are women and men who have answered the call to fill these positions. It's not an easy job. There are those that love their patients as if they were family. Those are the ones that go home after a tough shift and breakdown because they've had to hold it in all day to show strength and hope to people. Those are also the ones that celebrate the joys and smallest victories with their patients as well because they know EVERYTHING hangs on those small wins.
The CAs (clinical assistants) are some of my favorite people on this floor. They get the not-so-fun jobs of logging and cleaning the patients output (a.k.a. pee and poo). They are marvelous people who work to make our son laugh, offer him help, always offer to get us whatever we need, etc. They make the beds, bring us linens and supplies for bath time, and come when we push the little red button (it works like the Batphone). One of our recent ones, Felix, even fancifies the bed sheets! I learned today that he used to work in a hotel prior to working this position. Assuming Ivan is stringing us along, I can believe Felix worked in a hotel. How? Because he folded the sheets in an artsy way. I jokingly told Ivan today that I felt gipped because we didn't get any swan-shaped towels. He chuckled.
The nurses are all incredible. Not once have I felt we were getting substandard care. It's especially amazing when my friend's cousin, Katie, stopped by early on in our stay to introduce herself, say hello, and pray with me before she left. God's provision for sure. She has since been our nurse and not been our nurse but stops by almost every shift she has to check in on Dempsey (and us). Each of the nurses we've had have stopped by at least once when we weren't their patient. They just care for Dempsey that much.
The doctors have a super tough job. They are in charge of the treatment plan and execution for these precious bodies. That cannot be easy. It is hard to see people younger than myself in charge of my baby's care, not gonna lie. Sometimes I wonder if people who don't have kids can fully respect what it is to be in our shoes. I doubt it. But I know they are part of a BIG team that does have people who have been where we are, or have been around it long enough to "get it". No one person is calling all the shots. That is a good thing. There is a lot of input from many specialists going into formulating Dempsey's treatment. Sometimes this means getting answers takes a little longer... many opinions to coordinate. Again, though, they have all been professional and we extend grace to the newbies who are learning from seasoned professionals at this marvelous teaching hospital.
Child Life professionals are some of our favorites. The services and support they provide are vital to the success of care. They entertain, educate, counsel, sit with, encourage, and so much more. We know Ashley best. This amazing woman not only devotes time, energy, emotion into our family and many others, but she also has a daughter with many health challenges of her own. That little 7 month old baby has had several surgeries and a prognosis that is hopeful but not "normal". Yet, here her mother is handling her special care like a boss while helping so many other families walk their own tedious tight ropes.
I'm telling you, we were meant to be at CHOC. Not a day goes by that I think otherwise. Please join us in praying for these marvelous creatures. Pray for their hearts, minds, bodies, families, etc. Pray that they may feel our gratitude even when we forget to voice it. Pray our room is always a safe place for them to find respite and joy. Pray that our family can point them all to Christ. Pray that their needs are being met and they are blessed beyond reason. We would not have the story we currently have without them. We are GRATEFUL! We are blessed and we know it.
*Disclaimer: I shouldn't name names because I don't want people to feel left out. Just know we love each and every staff member we have me so far.
Tuesday, April 26, 2016
Blood Donation
We are LIVE for blood donors now!! Fweew.
It was a crazy thing to find out that we had to personally set it up so that Dempsey could receive your blood, or at least have your blood donated in his honor if you're not a match. I mean, we are on the oncology floor for goodness sake. Why this isn't amid one of the first things someone walks you through or helps you set up, I don't know.
I did speak to the nursing manager on the floor today about trying to make that information more readily available to families on this floor. She is going to try and get that info to be part of the Important Information packet that is in each room. We just saw that packet for the first time today. No one had told us about it or shown it to us. We've been here for three weeks, by the way. Oh well. It is what it is and I had a pleasant chat with the manager about it and it looks like there will be a positive outcome- so, I'm happy.
Anyway, back to the important stuff. How you can donate!! Here is the information you need:
It was a crazy thing to find out that we had to personally set it up so that Dempsey could receive your blood, or at least have your blood donated in his honor if you're not a match. I mean, we are on the oncology floor for goodness sake. Why this isn't amid one of the first things someone walks you through or helps you set up, I don't know.
I did speak to the nursing manager on the floor today about trying to make that information more readily available to families on this floor. She is going to try and get that info to be part of the Important Information packet that is in each room. We just saw that packet for the first time today. No one had told us about it or shown it to us. We've been here for three weeks, by the way. Oh well. It is what it is and I had a pleasant chat with the manager about it and it looks like there will be a positive outcome- so, I'm happy.
Anyway, back to the important stuff. How you can donate!! Here is the information you need:
Donate Blood || Dempsey is blood type A+
To become a Blood Donor for Dempsey (and other kids) please call 714-509-8339 or email them at donatebloodforkids@choc.org || CHOC 505 S Main St Suite 185 Orange, 92868 || www.choc.org
Blood and Donor service hours Monday-Friday 7:30am-5:30pm
*When you donate, you can specify that your donation is for (or in honor of) Dempsey Kenagy.
Even if you are not blood type A+ or the universal donor of O-, please consider donating blood and/ or platelets. These kids need your essence. Dempsey has been receiving blood and platelets from what's called the overflow bank- like the general fund of blood banks. He has been receiving health because people gave- whether it was to a specific recipient, in honor of a specific recipient whose blood type didn't match, or even because someone donated simply because they wanted to bless someone else.
YOUR DONATION HERE SAVES LIVES!!
Jake, Sawyer, and I are not allowed to donate blood. We were told it's because we wouldn't be able to donate bone marrow then, should Dempsey need it (unlikely). I don't understand this but we accept it. So, in this particular area, we are asking that you pick up in helping Dempsey where we are forced to leave off.
Prayer request:
That people/ employers will make this a priority in their/ employees schedule- it's super hard for those who work M-F.
That people will donate regardless of if there blood will get used for Dempsey. I guarantee a person will benefit from this life-saving act.
That each donation made will be prayed over and have a huge impact on someone's life.
Happenings
This morning I stopped by Talia's, our favorite coffee place, to top off and post a flyer asking people to pray for Dempsey. As I was leaving, Josh stopped me and inquired about Dempsey. How awesome is that? He said he's looked at the blog and been praying.
After Talia's I stopped in at Trader Joe's to pick up salads for lunch. When I was checking out I met Trenton. He attends Grace EV Free La Mirada. He asked how my morning was going and I gingerly mentioned that I was headed to CHOC to see my boy. He engaged me in a conversation about Dempsey and as I was leaving he said he would be thinking and praying about Demps.
So special to be blessed in these ways by other Christians out in the world. I firmly believe God placed Josh and Trenton in my path this morning to be an encouragement today.
MRI Results
Preliminary reading says "partial reconciliation". Further discussion with doctors tells us they are happy with the progress that is being made regarding this infection. The infectious disease doc told us the standard treatment time for this particular infection in a non-immuno-compromised person is three weeks. That's where Dempsey is right now. In an immuno-compromised person treatment typically doubles in length. So, Dempsey will have another MRI in May.
The improvement with this infection means that Dempsey will move from IV antibiotics to the oral version. This makes it that much easier for us to take him home.
Blood Donor Opportunities
We have jumped the hurdle that was blood donor services. You are officially able to donate specifically for Dempsey or in his honor. See the blood donor facts on the right column of this blog (desktop/web version only). Our annoyances with the Blood Donor Services are 1. not informing us that we have to personally set up an "account" for Dempsey in order to receive blood specifically donated to him and 2. that the donating hours are M-F 7:30-5:30.
I have spoken to the nursing manager and I think she is going to make sure the blood donor information gets laminated and put on the ring of important patient information. *thumbs up*
Dempsey
He is overly emotional today. Everything is drama and he is easily frustrated. It's understandable. Hard to walk the line of allowing space and grace for the trials he's experiencing but also being parent to a child who still needs guidance and direction. I think we're doing all right on this particular tight rope but prayers are always welcome!
Amtryke (physical therapy tricycle)
We will be getting Dempsey a special tricycle to help him rebuild the muscles that have atrophied in his little legs. Our runner has been reduced to a walker in need of assistance and that just doesn't sit well with us. We need him back to his former ability. This tryke is a pricey piece of equipment. We know that God will provide- whether it be through fund that we have already been blessed with or with funds yet to come specifically allocated to this much-needed speed machine. :-) I have submitted forms and photos to start the process of acquisition.
If you have questions, visit the Got Questions? post and fill out the form. I enjoy questions and helping all of you understand our journey better.
Prayer requests: Pray for miraculous healing. Pray the infection disappears. Pray against side effects of medication/ chemo. Pray for perfect results on all tests. Pray against fevers and infection. Pray for courage. Pray for no pain. Pray for speedy recovery from any negative experiences. Pray over our care staff- everyone who steps in this room or helps us in any way.
Upcoming happenings: The month of May will bring a Chick fil-A fundraiser for Dempsey. Carisa is working to nail down a date. Once she does, we will share it with you.
After Talia's I stopped in at Trader Joe's to pick up salads for lunch. When I was checking out I met Trenton. He attends Grace EV Free La Mirada. He asked how my morning was going and I gingerly mentioned that I was headed to CHOC to see my boy. He engaged me in a conversation about Dempsey and as I was leaving he said he would be thinking and praying about Demps.
So special to be blessed in these ways by other Christians out in the world. I firmly believe God placed Josh and Trenton in my path this morning to be an encouragement today.
MRI Results
Preliminary reading says "partial reconciliation". Further discussion with doctors tells us they are happy with the progress that is being made regarding this infection. The infectious disease doc told us the standard treatment time for this particular infection in a non-immuno-compromised person is three weeks. That's where Dempsey is right now. In an immuno-compromised person treatment typically doubles in length. So, Dempsey will have another MRI in May.
The improvement with this infection means that Dempsey will move from IV antibiotics to the oral version. This makes it that much easier for us to take him home.
Blood Donor Opportunities
We have jumped the hurdle that was blood donor services. You are officially able to donate specifically for Dempsey or in his honor. See the blood donor facts on the right column of this blog (desktop/web version only). Our annoyances with the Blood Donor Services are 1. not informing us that we have to personally set up an "account" for Dempsey in order to receive blood specifically donated to him and 2. that the donating hours are M-F 7:30-5:30.
I have spoken to the nursing manager and I think she is going to make sure the blood donor information gets laminated and put on the ring of important patient information. *thumbs up*
Dempsey
He is overly emotional today. Everything is drama and he is easily frustrated. It's understandable. Hard to walk the line of allowing space and grace for the trials he's experiencing but also being parent to a child who still needs guidance and direction. I think we're doing all right on this particular tight rope but prayers are always welcome!
Amtryke (physical therapy tricycle)
We will be getting Dempsey a special tricycle to help him rebuild the muscles that have atrophied in his little legs. Our runner has been reduced to a walker in need of assistance and that just doesn't sit well with us. We need him back to his former ability. This tryke is a pricey piece of equipment. We know that God will provide- whether it be through fund that we have already been blessed with or with funds yet to come specifically allocated to this much-needed speed machine. :-) I have submitted forms and photos to start the process of acquisition.
If you have questions, visit the Got Questions? post and fill out the form. I enjoy questions and helping all of you understand our journey better.
Prayer requests: Pray for miraculous healing. Pray the infection disappears. Pray against side effects of medication/ chemo. Pray for perfect results on all tests. Pray against fevers and infection. Pray for courage. Pray for no pain. Pray for speedy recovery from any negative experiences. Pray over our care staff- everyone who steps in this room or helps us in any way.
Upcoming happenings: The month of May will bring a Chick fil-A fundraiser for Dempsey. Carisa is working to nail down a date. Once she does, we will share it with you.
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