Monday, February 28, 2011

The past couple of days Skyler has not been feeling very well. At times he seems pale with dark circles under his eyes. He has also been weaker. He started walking all by himself and was getting around really well but the past couple of days I have had to help him or let him use his walker. His temp also went up to 99.8 one night, the highest it has been since we have been home.  I was almost positive he was going to spike a fever landing him inpatient again. I was already planning in my head what I needed to pack, but by morning he was back down to normal. Thank goodness, Im just getting too used to being at home again I don’t want to have to go back to the hospital. Im not quite sure what that was all about but it has me worried. He also has been having extreme acid reflux or heartburn that’s been miserable for him. The medicine our oncologist prescribed for has to be taken orally instead of through his feeding tube and he wont take it because it tastes nasty and when he did try he just threw it back up. And the tums he is taking doesn’t touch it. It gets a lot worse when he lays down, so nights have been really hard for us. He wakes up at least every hour. He also woke up with a big headache today. I hope all of this passes soon and that its just side effects from chemo last week. I just pray he isn’t getting some sort of new infection.
We go back to clinic on Friday. He has to be sedated for a bone marrow aspirate and then back up for some more chemo. When I told him he was going to have to get a back poke again this week he said “That’s ok mom because I like the sleeping medicine and Im super strong so it wont hurt me” He is the bravest person I know. Also he was rubbing his central line yesterday like it was hurting and then asked me “When you were young and sick did your central line hurt too?” I hate the fact that he thinks this is a normal thing that everyone experiences when they are little. I hate that this is his new “normal” I wish he could just run around and play with his friends, and go to preschool. He loves his preschool class and teacher and is sad he cant go this year. I wish I could take him fun places like we used to instead of being couped up in the house all day. Our getting out now is going for rides in the car, but our last two rides he threw up so he doesn’t even like to do that anymore. I know this isn’t going to last forever and I am extremely grateful that we are able to be home, but its just hard sometimes.
 

One of the things that puts a huge smile on my face and makes all the bad go away, is when Skyler makes me surprises. These were my surprises he made for me yesterday….

                                                                     A beautiful flower


An awesome rainbow and heart

Thank you Skyler.  I love you more than you will ever know.  You are my everything and I am so lucky to be your mother.

9 comments:

Perry's said...

I get heartburn really bad. It started when I was pregnant with my first child. My doctor told me to put about 1TB of apple cider vinegar in a cup of water and drink as much as I could. I only took one big swallow and it took my heart burn away for a year. You are so strong and I love reading your blogs. Skyler is an amazing little boy. you are in my thoughts and prayers

Anonymous said...

Skyler is so strong and brave. I love reading your blog. Crystal, if you don't mind me asking, what religion are you? You have such a great outlook on life and its seems like you are very stable in your religious beliefs.

Keep fighting Skyler. I will pray that he does not have an infection!

Anonymous said...

Thank you so much, Im LDS. I really appreciate everyones comments so much.

Skylers Mom

tracey harvey said...

I ran across your blog on the allenjames website..my son has osteosarcoma and he does high dose methotrexate inpatient..he gets heartburn as well..one thing that helps him is glutamine. You can buy it at healthfood stores in powder and I mix it with a little juice. If he's able to drink..I imagine you could sprinkle it on yougurt too. Hope to meet you sometime..look for josh and Tracey Harvey. Keep up the great work!

jennifer said...

Bless you, Crystal, for what you are being called upon to endure with your little sweetheart. What a precious gift he is. I have been praying for you both. May all of Heaven and Earth come together to bring him health, and you strength. Here's to brighter days!

Padilla's said...

My son is disabled and part of his syndrome is having GI issues. He has horrible acid reflux and he takes prevacid solutabs. They are strawberry flavored and they dissolve in their mouth and I never have a problem with them. If you want to look up more information they are a P.P.I. (proton pump inhibitor) and are used quite often. I hope this helps.

Cyndy said...

Skyler you are a great artist! Crystal you amaze me!

lindsay Roscoe said...

I hope you know how much this little boy loves his mom. It shows through everything he does. I believe you are his hero

dailydaph said...

Oh, I'm so sorry he's not feeling well. Hopefully he'll feel better soon. Spring coming will help with feeling down. You could go on a walk! I'm really looking forward to that. Hang in there, guys!