Tag Archives: Gideon Jolicoeur

Gideon’s Make A Wish Denial

Faith & Hope, Special needs children, ,

Before I tell you about Gideon’s Make a Wish Denial, let me first tell you about what Gideon has been granted.

If you’ve followed our family’s journey over the past six years, then the following information will not be new to you.

Gideon has been granted a life that we never could have imagined. At the time of his diagnosis, we were told we had less than a year with our baby boy. We never dreamed we would get the gift of more time, but we did. But with that gift of time, we were also told of the struggles we would most likely endure regarding his health and our finances. We were told to expect multiple hospitalizations per year. We were told to expect multiple medications and procedures that our son would require. We were also told that our medical debt would be more than we could ever imagine.

However, over the past six years, all those things we were warned about never came to fruition. Praise God, Gideon has had two hospital stays in six years; one pharmaceutical medication that he only needs when he’s sick. And Gideon has no medical debt.

The blessings around our story are too numerous to count. I could go on to tell you about equipment that Gideon has been given, and the Family Camps that have been fully funded. And how someone anonymously gave us a new wheelchair accessible van in 2015. There are so, so many things we have to be thankful for.

Gideon has been granted so much over the past six years and we could not feel more grateful and more blessed when we look back over the course of his life.

So as I tell you about Gideon’s Make a Wish denial, I want you to know that even though I’m extremely sad and disappointed, we really can’t complain in light of all the blessings we’ve been given.

Over the summer Gideon had a respiratory infection that had us worried. So towards the end of summer I filled out the paper work for Make a Wish. I received a call and was told that because his life wasn’t currently hanging in the balance that it would take some time for them to get to his wish. The last week of August Gideon got sick and was placed on hospice September 3rd. His hospice nursed made a call and we had wish granters in our house on Friday the 13th.

Ever since Gideon was little, we knew what our Make a Wish would be for him. Since he’s blind and deaf, the one thing that brings him the most satisfaction is being in the water. We told the wish granters we wanted a swim spa so he could use it all year round. They told us to find the model we wanted and to ask for the biggest and best. So that’s what we did.

We sent them paperwork for this massive beast with all the lights and sounds…

St. Lawrence 20' Dual Temperature Swim Spa

We never expected to actually get one this big. From our conversation, I assumed that we should ask for the biggest and best because Make A Wish would negotiate it down to one that was smaller?? I’m not really sure what I was expecting. Regardless, the following Monday, the granters responded with this message.

Here’s why I’m feeling so sad. Gideon missed being granted a swim spa, by 17 days!! It’s not like Make A Wish stopped granting swim spas last year. It’s as of September 1, 2019. My heart is broken because we’ve talked about this for years. We waited to do Make A Wish because we lived in an apartment for two and half years, while we saved for our forever home. Now that we are here, we are 17 days too late. And now it looks like it won’t even matter.

Gideon was doing really well over the past week. He was back to eating and drinking and gaining weight. He had been playing and doing his physical therapy. We were hopeful he might get kicked off hospice at some point (as some kids thankfully do). Unfortunately, he got sick Thursday night and we had to have a hospice nurse come out at 3 am on Friday to stop the vomiting. I’m not sure what to make of it this time. Hospice is a roller coaster. One I hope Gideon doesn’t have to ride for too long.

All that said, Gideon’s Make a Wish denial is not that big of a deal. I just regret not doing it sooner. For a kid who can’t travel much and gets sick easily, having access to warm water (with jets and lights) at home sure did sound like one more amazing blessing.

Gideon had a good day

Faith & Hope, Parenting, Special needs children, , , ,

Yesterday, Gideon had a good day.

His intake increased and he even fed himself a Pediasure bottle! He also pooped four times yesterday! TMI? I don’t care. Also he was awake more yesterday than he’s been in a long time. It is a beautiful thing to see those bright blue eyes shine.

We will see the hospice nurse sometime today and I can’t wait to tell her how much better he’s doing. Nurse Kathy is the best. She’s the one who introduced us to my new favorite word for a diaper blowout. Are you ready for this?

Poonami

(poo+tsunami =poonami)

You’re welcome.

Anyways, as I was looking over my calendar this week, it hit me. We still have a lot going on as a family. Life doesn’t just stop because someone we love is on hospice. Laynie will still go to her sewing class and volleyball. She and Josiah will still do school work. Josiah still needs to work on his potty training (Jesus help me!). Nya will still go to her 15 month check up. And Gideon still has all his needs plus a few extras now.

My point in rambling our schedule, is this: We are going to keep doing life, and we’re going to do hospice too. Life is not going to look the same as it did before; but we’re going to do it like we always have. We’re going to love each other fiercely, we’re going to make time & allowances for big emotions, and we are going to walk this out (for better or for worse) in a way that glorifies our merciful Creator.

God has been extremely gracious, faithful and sustaining to us over the years. That won’t change for us. Even if the healing (this side of Heaven) doesn’t come.

“…shall we accept only good from God, but never adversity?..” Job 2:10

August is a Roller Coaster

Faith & Hope, Parenting, Special needs children, , , ,

August is a roller coaster. For our family, there are so many ups and downs associated with this month; and none of them have to do with school starting. We have had some happy moments in August, but we’ve also had some sad ones. For example, today, August 6th, we have officially been in our new home for one year!! I can’t help but laugh when I think back to our family living in a two bedroom apartment for two and half years. I brought my last two babies home to that cozy 900 square feet. It’s quite comical that we survived that season.

Unfortunately, I’ll always remember August 1st 2013, when we received Gideon’s PBD diagnosis. Talk about a steep drop for our family. That whole year is a blur. But on the upside, August 2013 is also when I began my blog; which started me down the road to my own emotional healing through transparency in writing.

While we have so many things to be thankful for, this August is a roller coaster, yet again; taking us somewhere we did not want to go. For six and half years, I have worked tirelessly to provide my son different ways to be nourished without the use of medical procedures. He has been to feeding therapy, we’ve used different pureed foods and even unique techniques to get those pureed foods down him when he wouldn’t take a spoon. But unfortunately, we finally hit the wall.

Gideon is losing weight again. His blood work shows malnutrition… It’s time for me to accept the fact that our boy needs a g-tube. {Insert heavy sigh}

Now I know what some of you are thinking. G-tubes are great! Such an easy feeding process! They can get all the healthy foods they would never otherwise eat! No more fights with meds!

And yes, those are all things I look forward to for our son. Unfortunately, what it is usually a quick and easy procedure, will not be so simple for Gideon. After a consultation with a surgeon today, we were reminded of why we have put this procedure off for so long. There are lots of “extra” concerns for Gideon to have a g-tube placed.

First of all, Gideon is borderline adrenal insufficient, which means he’ll need more than a few stress doses of steroids. Ugh! (If you have followed our blog for sometime, you’ll remember when Gideon was on a continuous, low dose steroid and how he didn’t sleep for almost a year…among other side effects.)

Second, Gideon has thrombocytopenia (low platelet count), which means that his blood does not clot well. So he will need a plasma transfusion before (and maybe after) the procedure. Again, these are not deal breakers, just added stress to what normally is a quick and easy procedure. But those are not even my biggest concerns.

My biggest concern is how do I keep Gideon from pulling the tube out for the first 6 weeks while it heals?? This kid will not even leave his hearing aids in for more than 30 minutes at a time, and he has had them since he was a baby! He won’t wear jackets over his shirts. Doctors have never obtained his blood pressure because he won’t wear the cuff. Oh and he kicks off ALL blankets. I’m telling you, unless this g-tube vibrates and feels good (which I know they don’t), Gideon will not rest until he rips it out. And as long as it is “healed” we can learn how to put it back in, no problem. BUT if he pulls it partially out before it’s healed, we could be pumping food into his abdomen cavity instead of his stomach. Then we have to have more tests, more procedures, more anesthesia… it’s a cascade of more interventions that we have, for SO long, been able to avoid.

So listen, I know this is not the end of the world, but it is still devastating for me as a mama. It’s gonna require extra precautions when I want to take our boy swimming. We are going to need more medical supplies and pads for when this thing leaks (yuck!). It could cause him to have reflux, something he’s never struggled with before. Basically this is just one more ugly reminder that I’m not going to be able to save him from all that PBD has taken and will continue to take from him. And so I need to grieve this loss for him and for myself.

I’ve been told, by many that have gone before me, that I will be so glad we did it. But I’m not there yet. Today I’m sad. Today I will grieve… and possibly tomorrow and the next day. But soon enough, the Holy Spirit will pull me out of the pit and bring me back. He always does. I’m faithfully sustained by the God who carries me through all the ups and downs of this life.

“He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand.” -Psalm 40:2