It was a little surreal filling out post-partum depression surveys (being honest w each question but noting that my feelings of anxiety and tears and sleeplessness had nothing to do w a newborn and all to do w a almost 2 yr old fighting the battle of his life, our lives) and breaking the news to my doctor about G. His jaw dropped and looked over at him. He was in awe. Of course he mentioned had we known even a week sooner we could have saved cord blood. He was right, But my, how would I have dealt w the news then, days before I was to deliver. I can't even imagine.
We went home with our homework bag of IV meds and hoped there would be no vomit on the way home. We had been lucky so far! I thought too soon. We were literally minutes from and G was singing along to Electric Company in the van and all of a sudden I heard a wierd cough. I turned my head and he was puking. It wasnt projectile-like (thank goodness) but more like with each cough it just poured out the side of his mouth. He had the most helpless look on his face with each cough and release. I couldnt do a thing but listen to it. I had to drive. As soon as I pulled up to the house he started whining. He didnt like it all over his arms and hands and cheeks. It was all over the most annoying, tiny crevices of the carseat. I had towels in the car in preparation for this but he wouldnt keep them on his lap. He kept telling me"No thank you, mommy. No blankets."
I brought him inside and changed his clothes. I couldnt give him a bath bc he cannot get one less than 24 hours after a spinal. He was all wiped down w a damp cloth and set on the couch. I started to put Caden in the Moby to go and get T from school and G started vomiting again. It was all bile. The kid had little in his stomach from 9pm the night before. He munched a little during lunch but not his usual. He was just too tired and distracted. I ran to get T right away and left G w/ my MamaC. He kept at it til 3:30 when he literally just passed out from exhaustion. Luckily I was able to sneak in a dose of Zofran right before he fell asleep. He slept for 3 hours. When he woke it was as if nothing had happened. He was happy, super hungry and super thristy. The rest of the night and week were vomit free! We just kept up w the normal oral meds and the scheduled IV meds that week.
Wednesday night was the Open House at T's school. Even though he came home w a fever it had gone down by dinnertime. He was so excited to show us his school we just HAD to go. He has also been excited to show us HIS church. We went as a family the weekend before and he thought he was big stuff. They have several masses they attend as a class so he has taken ownership of his new surroundings. Since it was my bday Charito picked up sushi on the way home (and a beautiful bouquet of flowers delivered earlier!) and we woofed it down just in time to make it to 7 pm prayer service. T gave us the tour of the school and G insisted on walking EVERYWHERE. He didnt care about the crowd hovering over him. He was FREE. It was adorable. I just couldnt tell him no. We braved the crowded hallways and let him have at it. As we left he yelled for Charito and I in the parking lot. We asked him what he wanted to show us and he said, "GO RUN!", and he took off (as fast as those little legs could take him. He seriously must have thought he was a speedracer bc the smile on his face was enormous! It was another one of those memorable moments of pride for daddy and I. That little man just keeps going. To have his drive?!) We ended the night with a stop to Mcds (anytime we are in the car now G automatically thinks of Mcds. We pick up a dollar fry that he barely eats but it makes him happy. It is now routine and embedded in his head). Everyone crashed pretty hard that night.
Thursday was a low key day. I did receive a gorgeous surprise from Edible Arrangements of chocolate covered strawberries. 24 OF THEM! It was devoured by Friday. I did get a nice visit from my brother Mike as well that evening and finally had time to get thru some bday cards. Thank you everyone for the cards and FB notes!
Grayson's slight cough and runny nose continued through this week. By Friday it seemed more frequent. I took him with me to Triston's appointment. He came home from school Wednesday with a fever of 101.6. By Thursday night it reached 103. I made appointment for same day clinic hours Friday morning. We thought maybe if I ran G upstairs to his doctor's office maybe they would take a listen to him. It was determined T had a "late summer virus" that could last up to 10 days w fever and cough. Grayson was in the clear bc he was not exhibiting a fever or coughing anything up. By the 19th, Sunday, Grayson's cough was much more hoarse and got us questioning-can we give him his asthma med? It's what we would have done before cancer if he had any sign of a cold. But now the cold is here bc of the chemo drugs and may last the whole phase. That is a question for me to ask tomorrow.
As for most of the week we did alot of this:
Reading, trains, computers, Ipad and Iphone, Leapfrog and Leapster, and movies and coloring.
And by the way-I am beginning to hate how much TV we watch in this house. I try to steer G toward something else but it really is his comfort item.
Other than the cough G was in a fantastic mood. Old G was in full swing! Silly and goofy and so active. And the attitude I remember from months ago. Add that to the mix of emotional mood swings the meds give him and he was a real character. Its like the terrible twos multiplied. One minute he is lovey dovey and the next he is wacking us in the head, throwing a toy at T or some type of tantrum on the floor. It is scary bc he truly wants to hurt himself and bang his head on he the floor or furniture. Of course, any injury worries us but a self-inflicted one is stressful. It is like someone else takes over his body. I know it is not as bad if he were older (some of the excerpts I read from the book are horrible) and could really tell us how he felt (the words some of these patients used are painful to read, they truly felt possessed and stolen at times and needed to seek psychological care during treatment to manage depression and other horrendous thoughts) but it is still hard to watch. There is no telling when and what will upset bc he doesnt even know himself until it happens. It is nothing I can plan or prevent in advance like I would w a student w behavioral/emotional issues. They typically have a pattern or way of execution I can figure out. Not Grayson. And it is worst when he is on the steroids. The past 2 weeks have been a nice break in the anger/frustration for him since we have administered no steroids during that time.
Early in the week he was able to squat on his own but unable to rise on his own. He would scoot his body on the floor to the nearest piece of furniture and pull himself up. By Friday he raised himself without the use of furniture or people. He also ate hamburger meat for the very first time this week. Odd cravings thanks to the drugs. He held onto his taste for sweets, too. We added cranberries and raisins to the mix this week.
Another plus! He chose to drink all of his oral meds on his own instead of mommy using the syringe. My boy wanted some control and independence back in his life and that made me so happy. No doubt his physical activity level assisted with these decisions and that was even more amazing to me! I would inform him it was time for medicine and he would scream "I drink!" and afterward he would yell to daddy, "I did it!" So proud of his own little steps!
Our anniversary was Saturday and we spent the day in-Naps and ordering Italian for dinner. Not how we had pictured spending our anniversary months ago (we have been in the habit of a water park getaway in past years) but ever so happy to have everyone together ( and believe me-had we been scheduled to spend it in the hospital I would have made sure we were all together there, too). We even attempted a dinner at the table and it lasted for a bit. The zucchini sticks helped keep G engaged. The calamari kept T content. He had already been home from school 2 days and I was just happy he was eating. The fever just wouldnt go away. We had a family movie nite and stayed up late goofing around upstairs. The best present for me was hearing all my boys (including C) laughing it up as they wrestled w daddy in the big bed. Just like ol times. Watching G roll around, somersault and dive while he gestured to T to do this or that to daddy like teamwork was all I needed.
To complete my week we made our way to Ra for more sushi with my brothers, sister and nephew. Then we stopped by the park for a bit. Being out and about with my family felt great. That time with them was the best bday present of all! It had def been a long time coming. Thank you, Mike, Neal, Amy and Ayden! I know they enjoyed seeing all my boys out in the world laughing it up just as much as we did!
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