This is how my Wednesday night went


It’s kind of how Sunday night went also. The last two weeks have pretty much been the same just at home and not in the ER. 101.5 to 102.9 fevers every day for two weeks with no clear answer. At first I felt like it was pneumonia but was told his lungs sounded great. So then I started second guessing myself and trying to figure out what else it could be.

He’s done this once before with one of his seizure meds so I decreased that a little bit. No seizures and for one whole day he was fever free. Tricky boy! Then it shot back up and stayed put.

Thursday the pediatrician asked the radiologist to read the film and it says Extensive Left Sided Pneumonia. So much for the ER doctor and the Respiratory guy reading the film and saying he looked fine the night before. Oh well, it’s figured out for now. He’s on an antibiotic and feeling better though he is grumpy today because he had a seizure this morning. I’m not ready to go back up on his seizure med right now so I’m just going to wait and see what he does for now.

The dumb thing about this pneumonia is that I think he aspirated during his pH study and that’s what caused this. I knew I didn’t want to do the study but it had to be done in order to go forward with the fundoplication nissen surgery. The study that was supposed to show how bad he refluxes. The study that showed he only refluxed fifteen times total in 24 hours which is well below normal. Yeah, that study. We’re meeting with a surgeon because even though the study didn’t show bad reflux he still throws up. His teeth are horrific. His gums are constantly inflamed and his esophagus is always bleeding. No matter how much I brush his teeth they will eventually fall apart with that much stomach acid covering them every day.

I’m really hoping this will help but we probably won’t do surgery until next year. Until then we’ll keep managing the throwing up the best we can. It’s not like he just started this, it’s been five years of daily vomiting. It would be nice to not have to cart around a backpack full of washcloths and changes of clothes.

Happy 7th Survivor Day Colby!

Colby and mom

Colby's 2nd birthday

7 years!

Wow! It still sometimes hits me like a train that you had a stroke. Some memories of that day have faded. Most have not. Just thinking about the moment the doctor said “He’s had a stroke and is obviously a very sick little boy” still brings tears to my eyes and makes me nauseous. The memory of walking into the PICU and seeing you hooked up to a ventilator still makes my knees shake. Hearing the doctors say they didn’t know if you would live and that we needed to be prepared to make final preparations for you was not something I could even wrap my  mind around. We were told we’d know if you’d make it in 72 hours. After that they would be able to tell how bad the damage was.

Your little body was so puffy from the dialysis not working that you almost weren’t recognizable.  I knew you could hear me though so I sat and talked to you. I held your hand and told you that if you wanted to you could go and we would be okay but if you wanted to stay we would fight together to give you the best life we could.You chose to stay and every day no matter how hard a day it is I give thanks for that decision!

Colby holding Moms hand

You are the strongest spirit I know. You are stubborn and ornery and have a desire to be more than a little naughty at times but I love you even more for it! Your will to live and have fun has never wavered. I doubt myself everyday and think to myself that I am tired of fighting this battle called recovery but then I look at you and I know I’ll never give up trying to make your world a better place for you. Days and weeks like this past one where you have spent almost every waking moment either throwing up or screaming in pain from muscle spasms break my heart but then evenings like tonight when you are calm and laughing at the t.v. make up for it. Your smile and your silent belly laugh melt my heart every time.

We will continue to try every new medication that comes our way to make you more comfortable. Today we picked up a new seizure medication from the pharmacy. This morning was the longest seizure I’ve seen you have. I hate watching you stop breathing and turn blue while I count the seconds until you start again. Tomorrow we will start the process of weaning you off your old seizure med while starting the new one. It’s a dance we’ve danced many times in 7 years. We also got the go ahead to try a different type of muscle relaxer. This one works on your back instead of all your muscles. The rope of muscles down your back pulling you over makes my back ache for you. I’m guessing breathing is more important at this point than the muscle pain so we’ll do that change first before trying the second one. To many med changes at once gets confusing.


Speaking of dancing, I wish you were still small enough to two step with me. Your dad won’t dance but you used to love it. No music though just dancing in the kitchen to the beat of your own song. I hope that this next year of recovery brings you amazing progress but if we continue to baby step our way through it, it will be just perfect. I love you my brave little man!

Assorted Nonsense

Opening presnts

I guess the last few weeks haven’t really been filled with nonsense so much as the usual medical garbage that we deal with. After having to postpone John’s third round of chemo due to low platelets first and then low white blood cells the following week he finally started round three. Two days after taking the CCNU pills that he takes the first day of the round his head started swelling bad. He was walking around with an ice pack ace bandaged over his right eye and was taking tons of pain pills and steroids trying to get the pain to go away. His face broke out in a rash again as well. It was pretty clear at that point that he had definitely developed an allergy to the CCNU. We called the oncologist to let him know and he said okay just keep doing what you are doing until your next appointment, go ahead and continue with the treatment plan. The CCNU is only the one day of pills so we figured it was over at that point. Did I mention I had the worst stomach bug I think I’ve ever had and during that day so he was taking care of the girls while I was sleeping on Colby’s bed. Colby would lift his arm up and put it on my face when his cartoon was over, I’d wake up enough to get him another one and then I’d fall back asleep. It was a fun weekend.

The following week John goes  for his Vincristine infusion and that night he starts taking the Procarbazine pills. He is miserable. We figured he got the virus from me. What was really happening was his body was reacting to the Procarbazine. By the following Saturday he had broken out in hives. He was up all night. I finally convinced him Sunday morning (Mother’s Day) to go to the ER and get some Benadryl by IV because the Benadryl pills he was taking weren’t helping. He went in got the Benadryl, some IV steroids and an Epi shot. Convenient of him to not tell me his chest was starting to tighten wasn’t it. He said he didn’t want to worry me. UGH that man can drive me crazy some times! They finally sent him home and told him to call the oncologist in the morning. So he came home and felt much better.

Monday we talked with the doctor and his nurse and they want him to with the infusion he has scheduled for next Thursday since that one doesn’t seem to be causing him any problems. They’ve only ever had one other patient in the neuro clinic develop an allergy to the two pills he was taking. Everyone else has a hard time with the infusions. Figures right? We go back for his appointment on the 27th to see what the new plan is. The original goal was to do 6 rounds of this treatment knowing that they’d never had anyone complete more than 4 rounds. At this point he’s completed most of round 3. He didn’t take 5 nights of the 14 Procarbazine pill doses but he will finish with the last infusion.

Neither one of us is really sure how we feel about it at this point. The nurse thinks the doctor will want him to go back on the Temodar that he took his first time taking chemo. She seemed to think that was what he usually recommends if you can’t continue with the PCV therapy. John’s worried that by not completing at least four rounds that means the cancer will come back fast like it did last time. The PCV therapy in combination with the radiation he did this last time was shown to keep recurrence from happening longer than the Temodar therapy he did originally. That therapy should have kept the tumor away longer than it did the first time so who knows what will happen this time. We both try and stay optimistic but it can be hard when you can’t complete the therapy that had a better outlook.

During all of this cancer garbage all the kids had the stomach virus, Riley turned 7 and Colby turned 9. We had a joint Spider-Man/Hello Kitty birthday party for them. Colby was excited that two of his friends from school were able to come and another friend who couldn’t make it to the party came over earlier in the week and played for about an hour. He loved it. He never acts very interested in having friends over so we’ve never tried it before. It was fun to see him having fun with his buddies.  I love that Riley thinks it is fun to share a party with him and that she doesn’t complain about having boy stuff with her girl party.

Here’s some pictures from the party to end with.

Mummy I love you and a G.I. plan

Last week Colby had an appointment with his GI doctor. She is such an amazing doctor and I love her. She moved her practice to the Children’s hospital and quit doing her call in hour. You  used to be able to call her up from 8 to 9 and ask questions, get a new prescription, things you forgot to discuss. It let her “see” more patients that didn’t necessarily need another appointment. Now that’s she’s changed locations she no longer has that option and I was bummed. Colby couldn’t get in to see her until the end of April! I decided to call the office and see if we could try some ideas before his appointment to stop his stomach pain. Instead she opened up her lunch hour for him and we were in to see her two days later.

I think my favorite thing about her is that she never has one idea. When you leave her office you leave with plan A, B and C at a minimum. Colby now has some antispasmodic drops for his intestines and an intestinal antibiotic. I’d never really thought about it but when she said that kids with feeding tubes generally have all kids of different germs in the intestines that other kids don’t it made a lot of sense. Colby’s feeding tube is in his jejenum so everything bypasses his stomach where the stomach acid should kill things. Hopefully the next three days of this medicine will help because so far the antispasmodic drops have seemed to make his stomach pain worse! Yikes. Thankfully if this doesn’t help all I have to do is call her up and move on to plan B.

After his appointment we went to The Leonardo  in Salt Lake City. They have a mummy display right now. Jahnna has been studying Egypt off and on for three years now. She is fascinated with it and recently saw a project on how to mummify a chicken. I put my foot down on that experiment. Sorry, no amount of pleading and begging is going to convince me to help her mummify a chicken! It’s an expensive exhibit so I figured John and her could go through the mummy portion and I would take Colby and Riley to the rest of the museum. Riley effectively stopped that when she started singing “Mummy I love you!” on the way down to SLC. She wanted to go so bad. So we all went.

I wish I could have taken pictures in the exhibit because Riley followed Jahnna around to each part of it and let Jahnna read each plaque to her. Even some adults listened to her. I was telling Jahnna she needed to keep her voice down when a nice gentleman standing next to her said “No, don’t stop her! I’m listening too!” They loved it and spent almost two hours inside reading and learning new things.

John laughed at me because on the very first human mummy I was listening to Jahnna read but I hadn’t actually looked at the mummy yet because I was getting Colby a new movie on his iPad. He was less than impressed with the mummies and wanted nothing to do with the entire thing. I turned to ask Jahnna if they knew if it was a male or female and right as I did so glanced at the mummy and said in kind of a shocked voice “Oh, it’s definitely a male!” Seriously I don’t think John could have laughed any harder. Thankfully the girls had no idea and it passed right over their heads because I wasn’t really prepared to discuss mummified male anatomy at that moment. I think I just expected him to be wrapped up like you see in most pictures. We got a good laugh out of it!

If you are here in Utah and want to see a really cool exhibit I’d encourage you to go while it’s still here. For the record this isn’t a review of the museum or the exhibit it was just a fun family day. The rest of the museum was nice but wasn’t spectacular and I’m glad we didn’t end up getting a family pass for the year. It ended up being a fun family day was yet another reminder of why I’ve enjoyed having Jahnna be able to homeschool. Eventually, I’d like to pull all three kids but for now it’s been a great experience for Jahnna and it’s fun to see her thriving and learning.

Happy 5th Survivor Day

Big Boy!

Five years ago was the day Colby had his stroke. How time flies once you get past the first year of recovery. That first year felt like ten. The last year for Colby felt like it was only a month or two long. The last year felt much longer for many other reasons but Colby definitely wasn’t one of them. He’s come a long way in the last year. We’ve tried a couple of different things like Serrapeptase which helped him be a lot more verbal. He’s wanting to do more things instead of just watch t.v. all day. He’s interacting with more people outside of school. I actually left him with a friend the other day for several hours and he didn’t have a complete melt down.

Of course he’s still a total stinker about some things like every week at therapy half way through it, he says he’s all done and won’t work anymore. He threw complete temper tantrums on the bus ride home every day until we figured out he just wanted to watch a movie because he was so bored. I can’t blame him an hour on the bus every day is pretty boring.

He’s still not a big fan of school. That’s pretty much an understatement. He thinks he should be able to stay home everyday and do nothing but play video games with his dad all day. He’s already started glaring at me when I mention the “S” word. School is such a naughty word!

I’ve been thinking today about some of the things I’ve learned over the last 5 years. Colby’s stroke isn’t just his. It’s affected us all. Jahnna is struggling with a friend who doesn’t understand what it’s like to have a brother with disabilities, John is worried about what will happen if his cancer comes back and how that will affect Colby and how he will be cared for, Riley so far hasn’t said to awful much so far but she’s never known any better. However, when I think of all the negative things I could focus on it always gets drowned out by the positive things that have happened.

Colby’s stroke has introduced us to more people than I can count. We’ve had the opportunity to let other’s into our lives in ways I couldn’t have imagined. I’ve seen the goodness and compassion of a community come together to support a boy they didn’t know. I’ve felt so much love, more than I could ever express. I’ve learned to appreciate the small and simple things in life. I’ve learned how to be grateful for things I took for granted. I’ve learned the true meaning of exhaustion and have seen will power stronger than I could have ever known to exist. I’ve seen triumph over something as something as seemingly insignificant as a single step or knocking over a tower of blocks.

Every day I am so grateful  that I am blessed to be able to care for and love Colby. I’m blessed to be his mother. Today more days than most I am so thankful for the amazing spirit and fight that boy has. I’m so thankful for his stubborn will to live, to fight the odds that were given him, for his smile, his laugh and his mischievous grin when he knows he’s being naughty. Today is the day we celebrate life!