Category Archives: Parenting

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

Palliative Care for Gideon

Faith & Hope, Parenting, Special needs children,

Last Monday evening, Laynie had her first volleyball practice of the season. Kevin offered to stay home with our other kids, but I thought it would be great for us all to go and watch her practice. It was not my best idea. Nya was crawling on the floor, Josiah was climbing on everything. We washed little hands and headed home to bathe the kids, with the hope they wouldn’t get sick.

All of our best efforts were useless. Tuesday morning, Nya was puking by 9 am. After quarantining her and cleaning her vomit all day, I prayed that the others would be okay. Unfortunately, Laynie woke up at 4 am Wednesday morning puking with the same stomach bug. And by Wednesday evening, Gideon began puking too. It was only a matter of time before me and my mother were also sick.

I’ve been a parent for almost 10 years now. And I can honestly say, I cleaned more puke last week than in all my 10 years combined. Thank goodness my sister in law and mom were there to help me while Kevin was at work! As a family, we have never been hit with an illness like that. (Kevin and Josiah were fine. Apparently their stomachs are savage.)

Thankfully it was a 24 hour bug for the majority of us. Unfortunately, for Gideon, the puking and diarrhea lasted for 3 days straight. He couldn’t keep anything down. It whooped him and us. We knew his recovery wasn’t going to be easy. When you factor in his degenerative genetic disorder, the recovery process is even more complicated.

All the kids have been loving Gideon this past week. It’s been heart warming to see.

So here is the point of me telling you this story. Gideon has not bounced back as we had hoped. When he was hospitalized back in May of 2018, we met with a palliative care team, just to have people in place, should things go south for Gideon. Fast forward to today, we called the team together and now have palliative care for Gideon.

Gideon will be receiving extra care in the home to help him (hopefully) get over this hump. We have tons of support in place but would appreciate your prayers during this time as we wait to see what Gideon will do.

Today was the first good day since he got sick. Gideon’s intake was good, he pooped (finally) and we even got some smiles and giggles out of him! But even with all those positive changes, it’s looking like his little body has just begun to wear out. Peroxisomal disorders come with a host of other problems and it just all sucks.

So the big question-

Could he pull through? He has before. And we hope he does again. But our goal for Gideon has always been quality of years over quantity of years. Should this be his last battle, Kevin and I feel confident that we have done everything possible to give him a joy filled life in spite of his circumstances.

So now we wait.

For our family, we also trust in the Lord. Psalm 139:16 reminds us that all our days were ordained before any of them came to be. So we trust in God’s timing while we wait.

Finally, smiles and giggles before bed tonight.

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