Our Boy Wonder: April 2011

Well, I am happy to say Grayson made it through his first month of Maintenance (March) without any hangups! Yeah, we had too many funerals to mention, stomach viruses for Triston and Caden and other typical family junk BUT G made it unscathed.

Then April hit. Literally, the first day of April!

Friday, April 1st

G woke with a fever. A yucky one. 38.6 C. His spirits were good and he ate and drank before I left for work but I called many times in the first few hours. MamaC and TitaMel were with he and Caden and I was at work dealing with report cards, IEPs and prepping for conferences for the following week. Each phone call revealed the temp was not budging. I called clinic for advice for our next step. We had not had a fever episode lasting more than 2 hours since Halloween. I knew it wasnt good. They asked us to come in and at least check his counts. I left work by 11 and was there by noon. I was so glad I called to go in and see them. When I walked in the door it was VERY clear he was not up to par. His energy level had changed since I left at 7 am. I JUST KNEW something was brewin in him. The day before we were blessed to have Nurse Jenn (the one from the hospital's marathon Nurses for Change video) babysitt for him and he had slept most of the day. No fever tho. We both hoped it was just chemo tireds but Friday said otherwise.

When we arrived they drew his blood for counts and a blood culture. He was soooo tired and yuckos. He just layed in my lap whiney and tired. He still had some perky moments, silly interjections toward Nurses Meghan and Noelle. He even fought off Dr Kwon pretty well, too. We were given permission to give him Tylenol (they gave it to him there. If you recall-we cannot give him ANYTHING without their permission) and sent home. If he got any worst we were to call immediately. The blood culture results would arrive in 24 hours.

Home we went. I picked up Mcds (our usual routine after any "Dahtor Twon" visit) and by the time we got home he was passed out. He slept for 4 hours and woke a different kiddo. His energy and appetite were back. We figured he was past up whatever it was.

Saturday, April 2nd

He did wake in the middle of the night and ask for milk. Then we cuddled and shared some ticklish moments all while trying not to wake the rest of the house. I was convinced he was fine.

Our morning went on as a usual Saturday am-MCds breakfast, Phineas and Ferb and reading books and the paper. G was in a fantastic mood with an appetite to match. Charito did some errands, then I did some errands (we didn't want to take G out just in case) and by the time we were all home together again in the afternoon we decided to go for a walk. Then the phone rang. It was near 4 pm. I noticed the caller id and it was Dr Kwon. I thought maybe he was checking in on G. He asked how he was. I reported all good news and he turned my smile upside down when he said, "Well, I am glad he's good but he has to come in. The blood culture came back positive. Something is in his bloodstream. We have to start him on antibiotics." Alrighty then. "How long will we be there?" I asked. He responded by saying 2-3 days the least. It all depended on test results. Here's the lowdown - a positive blood culture means that some type of bacteria grew over time in the blood sample they took. What type of bacteria is unknown til more blood cultures are drawn and longer growth takes place. It is all comes down to time and what specifically grows in the lab.

G heard me tell Charito and he asked for his shoes! He was ready! I thought of Triston. We obviously werent headed for a walk now. I sat him on my lap and told him there was a germ growing in Grayson's blood that Dr Kwon has to get out. He said it before I did, "So you are gonna be in the hospital for a few days? But it's ok, mom. You will call me and tell me when you are coming home, right?" Right-o buddy. I love that kid. He hugged me and told me he would miss me.

G and I were sitting in our room by 6 pm. Luckily we got Tower (the new section of the hospital) with the roomy, hotel-ish feeling space. I don't feel as claustrophobic in Tower. I had a bag packed from the day before just in case so it did not take long to get out the door. We had another one of our fav nurses, Diane that night. We settled into our usual routines and got him started on a Vancomycin (aka Vanco-a general IV antibiotic) until further specific test results arrived. There was no time awastin'! G was still in a great mood and eating well. It seemed as though there was no reason for us to be there from the looks of him. But again, that is the story of our cancer life. Chaos on the inside of his body and a generally happy boy on the outside.

We both slept really well that night. I couldnt believe how well I had slept actually. Considering the day before I had literally walked away from my computer, a pile of work, report cards and notes and stress to rush him to clinic and there was still sooo much to get done. But that is almost (almost-I am still learning how to let go of the other stressors with ease and aint nothing like my work staff to help me along the way) the reality of it all. None of it matters (or should ) when it comes to your children. But I had TOO many deadlines looming in my head. But sleep must have been what we both needed bc it was THAT easy that night.

Sunday, April 3rd

We woke feeling good. I ordered us our omelette, cinnamon rolls, and cream of wheat. Anytime the nurse was in (another fav that day) I ran across the hall for more coffee. This was my "field trip" all day long bc I had to get thru the day w some caffeine. I tried all day long to get work done any chance I got. I was lucky that my IEP and report card websites were accessible from there. I was worried that wouldnt be the case. I know had tons of help from work simply waiting for my request but I wanted to try my best to get what I could done. He continued to get the Vanco every 8 hours thru his IV port over a 30 min period. By 8 am we had his 6 am lab draws. His Hgb dropped to from 7.8 Friday afternoon to 6.9. Below 7 is a def transfusion. He was hooked up to "new blood" by 10 am. They ran it through him over a 3 hour period. It was nice to know his body could handle that rate bc he usually is transfused over a 4 hour period. Now we know for the future.

I continued to plug away at work stuff but my head just wasnt in it. By noon I had a chance to talk to Dr Kwon. He was pleased with G's behaviors, mood and appetite. It was all about waiting for the type of bacteria to be determined. It wasnt until I was talking with him that more info (bc tons is always tossed at us from so many diff people) started to click with me. This was NOT a virus. A fever can mean a virus but this was not. That was why we were there. This was an infection. A bacteria is somewhere and we needed to locate it. If this were a virus we could have attempted to fight it out at home. He explained this was one of two things. A contaminant or a bacterial infection. Test results later that day or the next morning would determine which. A contaminant could have been any lil germ that entered his body most likely during port access on Friday. Like a cough, sneeze, brush of a sleeve/toy/you name it germ near his port area or an airborne germ touching the open hole during that split second the nurse pops that needle into his chest. It can be anything! Any germ you or I breathe in and out on a daily basis (and are easily able to tolerate or even be completely unaware it is swimming in our bodies somewhere) may have entered his bloodstream at some point causing the blood culture to come out positive. OR it is a bacterial infection of any number of types that entered his bloodstream at some point. The hows kept tugging at me. I wanted a why. A how. But just like w his diagnosis-there is alot of unknowns.

My nurse let me talk it through with her further once I thought I had a handle on the explanations. It was like studying for a quiz. Trying to get all the bullet points and make sense of it all. Yes, it could have been a simple contaminant. But either way "an alien" is running around his bloodstream and there was no possible way his already compromised blood system was gonna be able to fight it off on his own. A bacterial infection was the more serious option. With the hopes that no other bodily systems would be impacted. And once it was confirmed to be a bacterial infection we had to find out what type of antibiotic it was most sensitive to to rid of it. That was another reason why blood cultures continued to be drawn so they could find the perfect antibiotic to treat as quickly as possible. The Vanco was not going to be enuf for a bacterial infection.

But what was clear-his blood was going haywire trying to fight this off and the antibiotic (even the general one-Vanco) for now was doing something right. Every blood culture since Friday's during clinic (blood cultures take 24+ hours to obtain results from which is why we got a call Saturday) was coming up negative. The antibiotic was working. But it was still to be determined what that antibiotic was actually fighting off-a contaminant or bacterial infection. She let me know that sometimes up to 3 negative blood cultures lead to a discharge with followups in two days. We still didnt know. And by the way-if any of G's nurses are reading this (or any other nurse for that matter)-if I mess up on any descriptors and amateur explanations please correct me so I can get it right! I am trying my best at this nursing stuff.

But the good side of the coin-his platelets and WBC and ANC were holding up pretty decent. ANC dropped from 4, 000+ to 1, 000+ but at least he wasnt neutropenic. Now we just had to wait for more results. We played some music, reaad books and surfed the net together playing nickjr and disney games. Even tho we were in the hospital we had each other for some bonding time and good laughs. In fact, most of the day Charito and the other boys hung with us. They spent about 6 hours with us. Triston took a trip up to the cafeteria with daddy for whatever he wanted. He brought back all sorts of goodies for each of us (he put so much thought into it all, so sweet). Caden was an angel as usual. He was so content being held, eating in the stroller and watching the parade of adults in and out of our room. The kid loves attention and boy did he get it. T spent some time on the computer while G watched from aside. When we weren't eating, we were playing, watching TV or just being chill. It was nice. Nice that no matter where we were we got to spend time together.

Saturday evening-fantastic mood, loving all the mommy solo time

Sunday -gotta love cafeteria food

This kid would think a parade of ants is exciting!

Monday, April 4th

Another decent night sleep with my bed hog. For a lil guy he takes up a lot of room. And bc that first ever night in the hosptital I couldnt bear to leave him in some metal cage looking crib, I have slept with him ever since. I just sign a waiver each hospital visit that allows us to get a bed and not a crib. He and I fit perfectly in it. I wouldnt have it any other way. He had the usual checkins for vitals and draws at midnite and 4 am. I dont mind the 4 am one and he typically doesnt know its even going on. The earlier we get that first morning blood draw the sooner we have counts and possible test results. Hospital time-drs usually check in w u by 10 am. Dr Kwon is an early bird so we usually see him around 8. He walked in and surprised me with his first sentence. "He sleep good? Wanna go home today?" HUH????? What???? It proceeded to explain it ended up being a bacterial infection. It was a strain of Strep. We could go home on an antibiotic. There were a couple of options of which type would be effective. He asked if we were comfortable with at home IV administration and I said of course. I had done it so many times w AraC in the past. And if it was a oral drug he was to go home with we have not struggled with him to take any drugs since that first week home in August-so either way I was cool with. I just had to speak to Infectious Diseases to make that decision together.

So I waited. I didnt know whether to feel relieved or scared. So much MORE info was tossed at me so early in the day that I now had to sort thru. And more was to be discussed once I met this new dr of a department unfamiliar to me.

And when I immediately met her, during and after-my stomach felt so heavy. It was a whole other chapter to our everyday game of cancer. It was our first TRUE REALITY to the everyday germs we fear and try our best to protect him from.

I will refer to her as Dr D (D for the disease in her title-Infectious Diseases). I will say upfront I did not appreciate her delivery. Her exit left my mind spinning and crushed any confident feelings I had of having some sense of hold over our past couple of cancer months. It was not entirely her fault. It was the raw reality of how fragile he is. She was just stating facts. As I said before, this was our first experience w one of many complications he faces everyday. Just like Halloween was our first hospital stay for a reason other than chemo-causing. She explained it like this:

He had a strain of Strep (one of many of types). This strain usually houses itself in the ears, nose, throat and sticks around for a bit causing any other kid a simple runny nose. For G it went further. This bacteria entered his bloodstream at one of these body parts (like a tiny cut or hole) or from his hands in his mouth possibly while eating or a cut on his hands or a hangnail or well, anywhere. It was prob the tiniest cut or knick somewhere that obviously didnt hurt him enough to complain about or was microscopically small enuf for us to bypass. INSANE! The point was it got into his bloodstream and infected him. STILL INSANE! Something I most likely could have done nothing about invaded my boy. A germ that any other kid could fluff off made him sicker. I know you have heard me talk of these fears for mos (re: our bubblicious life) and here it was. SO FRUSTRATING!

She checked his mouth, ears, nose and throat for any sores or cuts to be sure. And it didnt matter if the "hole" was found or not. It was in him and needed to be exterminated. She wanted to be sure the bacteria did not go further and infect his lungs so she ordered a chest xray. Pneumonia could have been the next step for this infection, easily. She also did not want pneumonia to interfere with the antibiotic of choice.

Chest xray was clear. Her next questions were about what I was comfortable administering at home and I said whatever they felt was necessary. The good news was that there were a couple of antibiotics sensitive to this strain. We had a few options. I asked if one in particular would knock it out of his system quicker, for good, etc. She stated the best option to really rid of this bacteria was an antibiotic thru his port called Ceftriaxone. I agreed I was comfortable giving it to him at home and she said she would then set up Home Health for a tutor session. He would need the antibiotic for 7 days. We would be discharged today and follow up with Dr Kwon next Monday.

Right after she left I met with a Home Health coordinator. This is a setup in the hospital for which any meds or care (unfortunately, there are young patients that are home-bound for their health care needs) are set up in the home by a nurse who then follows you through your needs at whatever point during treatments. Typically the one you are assigned to initially is the nurse who sticks with you for the long run which is nice. The coordinator described the makeup of the antibiotic and how it is administered. This was important bc it was all about timing with this drug. While we were speaking he was getting his first dose while napping. That was at 2 pm. This drug needed to be given at the same time everyday and it would take 30 minutes to complete. That was already a problem for me bc I have to get Triston from school at 3pm. She told me we could push it back 30 minutes or so starting tomorrow. Wheh!

Once Grayson woke from his nap we were ready to be discharged. We were home before bed time. His counts were good then-

ANC 1, 100

Hgb 8.5 (thanks to the transfusion)

Platelets 199

He went home accessed-needle and IV tube in his port ("tubeys in"). This was the longest he was going to be home in access mode-7 days. In the past it was a Mon-Thurs and I deaccessed him Thursday nites. This was going to be interesting. Especially if he was going to act like a "normal" 2 yr old-jumping on the couch, climbing, running all the while making me a wreck. I dont mind it when he is in chill mode but when is feeling GOOD he has me on pins and needles with any fall and the thought that needle shifting. I did not want to relive that moment when I accidently stepped on his tubey in the hospital in November and tore out his needle. No way!

We were to go home and continue to give him his usually scheduled oral chemo meds and wait for the antibiotic to be delivered to our home that evening.

Needless to say, I was happy to be home. G walked in like he returned from a vacation. All cool and relaxed. Barely phased but happy to see Triston (for a bit-and hours later he was beating up on him, same old G. I swear T is gonna need therapy for little brother abuse issues). But it REALLY was nice to be home. I got those kiddos to bed and tried to get more homework done. How was I gonna be ready for conferences Wednesday?!

Once I got in the groove to working, I got a call from Melissa, our Home Health nurse. She called to set up a time to meet up Tuesday. We would meet at 2:30 giving us time to have the drug started in him a little after 3 (a better time frame for us so I could get T). I knew I would like her, she sounded very nice on the phone. Then the meds arrived. I was to place them in the fridge as soon as possible. Everything was labeled very clearly. Everything had his name on it and clear directions. The Ceftriaxone specifically labeled that is was to be refrigerated and was light sensitive. It was sealed in a dark brown ziploc bag to shield from light. I added an additional towel around it and placed it in the fridge. The information packet was grand. I fiddled through it a bit and decided Melissa would talk me through the rest tomorrow. My brain was officially fried and I was off to bed. I decided there was no way I was going to make it into work bc I knew the exhaustion would set in in the morning and I wanted to monitor Grayson closely. And I was concerned that last minute the nurse visit would need to be changed and I needed to be ready for that. I def did not sleep well that night. So much going thru my mind, sorting through the last few days and what still needed to be done.

Tuesday, April 5th

G slept great that night. Everyone seemed well rested but me. It was even hard to get T going and off to school he was so comfy in his bed. I was tempted to keep him home and snuggle w him but I needed all hands on deck for G. It's not like I was sending him off to a dungeon. He loves school.

G was pretty chill all day. I did our usual numerous checks of temps, stools and urine. Monitoring his every move. When Melissa arrived she also had her supervisor with her. That was helpful for me. This whole allow a strange nurse into your home bit was a little nerving but I was ready. I was eager to see how different this antibiotic would be to the IV chemo drugs I had done in the past. I remembered the coordinator mentioned to take the med out a couple of hours before Go time. Rememer-anything given to him thru his port hits his heart first so imagine ice cold fluid hitting that tiny heart and blood vessels all in one quick shot-OUCH! Melissa walked me thru the steps. I liked her alot. It was also nice to talk to other adults familiar with this day in and day out. We chatted about his diagnosis and how we are managing as a family. I needed it. Often when I dont even realize I am due for it.

Rather than the 30 minutes we were told it would take, it took an hour to finish up. From hookup to empty exactly an hour. SOOO glad we pushed it back a bit! G was sleeping when they arrived so of course it upset him to wake with strangers in our house no matter how many times I told him she was our friend Nurse Melissa. Luckily I had someone else bringing T home for me.

He eventually calmed down and just sat and watched TV during the whole thing. When T got home he thought the whole concept was pretty cool.

Prepped set up:

Ball of Ceftriaxone "Ball Medicine"

2 saline flushes "washes" or we pretend his tubey is drinking/thirsty and make swallowing noises

1 Heparin flush "closer"

gloves and alcohol swabs

Medicine ball before:

-we untangle the tube and hook it up to the tube hanging from his chest
The ball part rests on a couch/table/beside him while he does whatever he wants. As long as he carries it with him or puts it in his pocket. I even gave him a purse to carry it in if he wanted to

Medicine ball during:

as soon as it is hooked up air takes affect and the ball deflates as the medicine enters his system

We knew it was done when the bar in middle was rock hard and we couldnt feel any bubbles of liquid remaining.

Silly boy! Making raspberries at me!

The plan was that Melissa would be there Tuesday to tutor and come back the next day to watch me do it. Once she talked through the steps I asked if I could do it and she intervene when necessary. She was comfortable with my experience and agreed. She jumped in when I needed her. She was great.She was a great teacher. The procedure was not much different from what I had done before. And really as soon as he is hooked up you are just waiting that hour before unhooking him. But her next day visit was gonna be perfect bc that way Charito would be home to see it and do it with Melissa. I had parent teacher conferences and even though I was going to run home during my break I would not be there in time for the start time. So that was the plan. It worked out great. An actual nurse would be there to show daddy what to do. Up until this point he had never done any of his IV meds. It was just too difficult for him and I respected that. But he told me he was ready, and really he had no choice. There was no guarantee that I could sprint home during my break. But I could tell the thought of a nurse there in case he did something wrong comforted him. We went with it.

She left reminding us if we had ANY issues to call her cell number at anytime. VERY VERY COMFORTING

Wednesday, April 6th
I worked late into Tuesday night but got it all done. We woke with a rather relaxed kinda morning, much needed. We did Mcds (again) and made sure to stock up on my coffee. I made it to work by 11:30 am (with 2 tall cups of hot caramel mochas in my hand). Conferences started at noon. My wonderful staff had things prepped for me that I still thought I had to squeeze in-printed my report cards, organized n stuffed folders and left remaining notes for me to complete that day ( I had missed some important conferences during my absences in past week and I had to finish up the legal stuff that day for their deadlines). I love them all! And I have to say-in my 11 years of teaching-these conferences went so smooth. Smoothest I have had in years. No drama. Any "bad news" I had to deliver went well(which is difficult enough bc their child already has a disability and usually by April conferences I have additional "notes" I have to share). Maybe it was the zombie-like aura I had about me?! But seriously, I needed that. Even though I was exhausted I was effective and to the point all the while still understanding and open to their needs. I was damn proud of myself for not being there for half a school year and having such a handle on my group in such a short amount of time. I really didn't think it was possible. Believe me, I have my days-where I think I am horrible teacher and feel useless. But even through all the muddle I had to share with the parents there was still time for some compliments toward me and that felt good.

I made it to the house during my break. Charito was doing great. It was nice to see Melissa again. She said she would have to come back on Friday and replace his needle. Typically a needle is good for no more than a week. I was little concerned how that was going to work. G was to continue the antibiotic thru Monday. Deaccessing him and reaccessing him were not mentioned before we were discharged. Melissa and I discussed that would mean deaccessing him. Waiting a bit, applying magic cream, waiting an hour for that numbing to take affect and then reaccessing him. She would be here almost 3 hours or so. We came up with a plan. I told her I had been shown and told what to look for around his port if there was an irritant, infection, or anything not right about it. I check him many times throughout the day. Was it possible to leave it in for the additional two days as long as the port site looked well and his dressings were intact. I have applied extra tape to the Tegaderm/dressing area in the past for reinforcement and was willing to do so this time if need be. She decided it sounded like an attempted plan but she would call our clinic and talk to our staff for what was best. Clinic agreed that as long as the site was fine we could keep the original needle in and just bring in last dose of Ceftriaxone Monday to clinic. We would give it to him then, that way I wasnt spending the day at clinic for those procedures Monday and then meeting Melissa at our house for more. Perfect plan!

So that was our last visit with Melissa. Kudos to the Home Health Program and the wonderful assistance. I made arrangements with her that following Monday to have the program pick up the leftover medical supplies. Even the delivery persons were kind. We really are lucky to have the support we do. It truly makes this whole battle easier.

Thursday-Sunday, April 7th-10th were pretty chill around here. We remained on lockdown. We did not want to expose G to anything or vice versa until this infection was out of his system. He went nowhere-surprise, surprise. We are getting really good at what we call "Drive Thru Field Trips". Taking G with for pickup of drive thru meals, getting gas, dropping off recycables-anything that consists of him remaining in the car. And of course he enjoys them. Why? Bc he doesnt really understand what he is missing out on. Bittersweet thought, huh?

I took T out for a movie and he ran many errands with either Charito or myself. Grayson was in good moods and great appetites. He tolerated his ball medicine very well. He and Triston became our checkers. Periodically during that hour of medicine ball we would hear them yell to us "It's almost done! It's getting smaller! It's shrinking! It 's getting hard! (insert joke here). We cannot complain right? I mean, the fact they are so tolerable of these foreign objects in our home, a part of the process, interested in learning of them and fully aware of why and how and what they do-I better have some doctor sons in my future! I could use the retirement fund!

But even though we were managing G, rest of life still went on. Wednesday Triston went to Awana (thanks to Dave and Najette bringing him). Then Friday night was his Talent show at school. And my spring break began!!!!!!!!!!!!!!! Two weeks baby-boy did I need after what April laid out for us already!!! His class put on a song performance. He was so excited. He saw the whole show that day for the afternoon performance during school hours and he couldnt wait to tell me all about the other performances. He kept singing the song the K class put on and it was hilarious. I brought Caden with to get him out of the house. As we drove over to school and I dropped T off at his classroom for his makeup and costume preps I realized ---Caden has been to Target a handful of times in his 8 mos of life, the grocery store maybe twice and really nowhere else. I prided myself in years past, having my boys out in the world at 2-3 weeks old. Getting them used to the sensory world, tolerating restaurants and raising well-behaved public outing type of kids. And here was Caden with such a limited exposure. Now I know the winter months dont really count much, so I have that on my side but still. It bothered me and I know there was not much I could do about it now, but with warmer months ahead I was going to take advantage of every opportunity I could to "mold" him.

And I have to say, Caden did great in the crowd! So alert and curious. I had the chance to sit by Dave and Najette and Eileen. Triston's class was adorable up there. T was an alligator and they sang a rock type song. Too cute. And it was to all of our benefit sitting together bc right after T's performance I was to pick him up in the hallway and I was able to leave Caden with them. They all got their little man fix-being his godparents and all it was soooo worth it! Even Eileen fed him his bottle. We stuck around for a couple more shows and headed out at intermission. T was pretty tired by then and getting whiney. Bedtime was calling!

checking out the program during the Talent Show

Caden had an adventurous week though, there was more than just attending a talent show-he has begun to boycott some purees (even tho I make them as thick as wallpaper paste. He WANTS big boy food. April has been a big month for him-chomping on cheerios, yogurt drops, honey smacks, rice, bananas, avocado and cooked carrots. We also graduated him to the bigboy car seat. We picked up a new booster for Triston, moved Grayson to the Recaro and gave Caden the Britax. Everyone seems content with their new seating arrangements (at least there are no complaints so far!).

But for Charito and I, we were anxious for Monday's clinic visit. He was most likely not going to go through his spinal that day. But we wanted to know what was next. Counts were def on our mind. We hoped this was all under control and we could get back to our "normal" medical routines.

Monday, April 11th

I prepped G for spinal procedure just in case-magic cream on his spine and port. We was in a good mood, even upon arriving to clinic, considering he wasnt allowed to eat past 10 pm. He was actually excited to be back and see his favs. Princess Jennie is still on maternity leave but he has really taken a liking to Meghan.

I hooked him up to his last dose of Ceftriaxone while we waited for counts from the lab.

Yucko----

ANC 420 Yikes!! it was over 1, 000 when we left the hospital exactly a week prior

Hgb holding strong at 8.5 still

Platelets dropped to 133 from 199

Not so good! Talk about living in the bubble for another week til counts were taken again. His ANC had not been that low in MONTHS! No procedures took place that day. But, G was in a great mood, tired when he should have been, eating well-happy notes for Dr Kwon. We left after the hour of Ceftriaxone and were told to return the following Monday with an attempt to take care of the spinal tap and injection. And bc his counts were so low we took him off all oral chemo drugs until we could assess his counts the next Monday. He still got his Bactrim for the week.

The rest of the week had its ups and downs. Steroid mood swings kicked in-Jeckyl and Hyde made his random appearances:

Turn it on.........

as he tells me " I sad, Mommy!" Boo hoo, buddy!

At this point I am ignoring him with no comments and he is yelling out to Bryley (the dog!) that he is sad and obviously deserves some attention.

And Turn it off.....

This is where he sits when he wants to pout-on any container of pop or drink we have sitting on the not so organized kitchen floor! Wierdo!!

His other steroid-line ( or typical 2 yr old line-take your pick) this month is..."it doesn't work! Wahhhhhh (insert kicks and screams and pounds here)" And if you dont notice he is crying bc you are intentionally using the planned ignoring strategy, he comes to find you and tell you "I kying, you see? You hear me?"

Steroid taste buds this month-
spicy nacho doritos

salsa
avocado

fresh veggies

ground beef-any type of meatball or burger patty

canned green beans
Grammy Sammy organic cocoa yogurt bars

cereal bars

some smoothies

Tuesday, April 12th-Sunday, April 17th

Remember way back when I complained of not having normal family dinners at the dining room table? Well, G must have read it and decided to help his mama out a bit. The past few weeks he has chosen, CHOSEN to sit at the dining room table. Calling everyone else to the table like a town crier to eat. He wants to sit in the adult chair like the rest of us. He wants to be like us. I love it. Grant it, it only lasts about 20 min but it is a step forward. After a while he mosies on back to the kiddie table and grazes through his meal between play exchanges but whatever. It is something, and even better-he initiated it! So now when it does happen, I get to be like other moms and yell at the boys for touching each other and doing this and that instead of eating. I got what I asked for, huh? Love it!

Other silly moments:

It started out cute but then he just looked at me with his SAVE ME eyes and I finally put the camera down!

Helping me put things in the cart

I also brought him with to get my hair done (AC got her Caden fix!) and then we went shopping. Just the two of us to Buy Buy Baby. It was wonderful just my littlest and I. This was his first time sitting in a cart all by himself. Was ready weeks ago and we never made it out til now. It felt like I only had one kiddo! Until I would see something I wanted to buy for the other two. But it was still lots of fun (see how relative fun is these days-HA! I am not hard to please, really!!!) I love their greater variety of Plum Organic and Earths Best foods. I even managed to snatch up more table food items for him. I got to check out the latest gadgets for new moms. Something I had not done since right before Caden was born. It was refreshing!

Playing with my niece Charley's first Elmo that Caden and I bought for her. I havent had the chance to give it to her yet-BC I HAVENT SEEN HER YET!

Yummy rice husks!
I introduced the sippy cup to the big boy and he took to it well! He did it all on his own Monday and Tuesday but then one of his top teeth started to cut and he preferred the bottle. We will go back to after those two cut thru.

We got some cleaning done....

Ticked off that Caden is moving in on his duties. He was soo mad! He is actually hitting Caden when he can. Another behavior I am trying to extinguish! Along with his recent omission of please and replacement with the word NOW! Stinker!

Ayden and lil sis Charley

And we even made it outside for the boys to ride their bikes. I bought a lower trike w an adjustable seat that would prevent G from falling from such a taller height or exerting too much strength. Go figure even with the seat at its shortest setting he is still too short. But, I modified it. For now I used a towel to cushion that boney butt of his and add padding behind him to push him up a bit. Even though he couldnt turn the pedals on his own he did keep his feet on them while we pushed him along. What a back killer! But he had fun and beleived he was doing it all by himself so it was worth it.

On Wednesday, April 13th I chaperoned Triston's field trip to Kohl Childrens Museum. I cannot begin to describe his excitement over this, my attendance! For 24 hours straight, any chance he got to tell anyone he did-"my mom is coming to school with me tomorrow!". We had alot of fun. And ironically I was grouped with his fav female student, S. They talk of each other often and it was so nice to spend time with such a sweet girl. It was the perfect group. And so nice to get out.

Thursday, April 14th

MARK IT ON THE CALENDAR-I OFFICIALLY LOST MY MARBLES, DECIDED TO ADD ANOTHER STRESSOR TO MY LIFE (BY CHOICE IN FACT) AND TOOK ON ......

POTTY TRAINING GRAYSON!

I figured what did I have to lose? I am on spring break-the best timing to give it a shot. We intended to face this mountain August 2nd, 2010 but leukemia put a halt on that. This was the kid sitting on the toilet at 15 mos copying big bro, actually going thru the motions. And then by 20 months it was clear he was ready but I was not about to try it on my last month of prego and w a wedding and other family events jam-packed into that July. Then as chemo months passed and increased urine output, diarrhea days and hospital stays set in I put it all on hold. But with Maintenance we have a nice schedule going. Fewer visits and drugs we are familiar with by now.

It was worth a try.

I thought it all through-I had to consider the times when getting up and down the stairs may not be easy for him due to steroids (which he is on for the next 3 yrs) or times when he does have diarrhea and needs to be close to the bathroom (we dont have one on our first floor-which did not prove to be an issue until Mamac 's cancer treatment drugs n surgery recovery). So, even though Triston wanted nothing to do with a potty seat bc he insisted on being just like daddy I bought one for him. I couldn't even find the one I had tried with T. I prob gave it away seeing how much easier it was to just do it w an adult toilet and not mess with the tiny one. Hind sight lessons. But, this potty could not be some plain jane. That was surely decided upon when Caden and I stumbled upon the Toy Story potty seat during our shopping spree. It has a handle that you "flush" and all the characters rejoice in "Yay!". It was perfect!

When I brought it out he thought it was pretty cool!

And believe me-even if he did an okay job over my spring break and then lost it all when I went back to work so what-at least it was baby steps.

BUT, can I tell you how amazing this boy is!? He has floored me!!! Read this:

Day one, Thursday-only two accidents. I am a throw them in undies or walk around naked potty training kinda mama. I pulled out his Thomas underwear and placed them on him that morning. He has to get used that wet uncomfy feeling and decide for himself it was nothing he wanted a part of. I set the timer on my iphone alarm clock for every hour (I didnt need anything less than that bc he actually pees every 3-4 hours on a typical day). By the middle of the day he was running to the potty each time he heard the chimes. He called it the "bell for trying pee pees". He got M&Ms each time he went. He was 80% successful that day. I did not get my hopes up though.

Friday, day 2-no accidents. By the end of the day he didn't even care for the candy reinforcer (Triston didnt want candy or toys. He was all about stickers!). I, the trainer, didnt even get to fade out the reinforcer bc he was doing it for me! Huh? Who duped who?

Saturday n Sunday-no accidents! And he continued to tell us "pee, pees" when he neeed to go pee or poop.

Monday, April 18th-chemo day was a true test. He continued to wake up dry (another sign he was ready for over a yr now). Our rule is if we are upstairs we go pee on the toilet ndn if we are downstairs we can go on the Toy Story one. As soon as he wakes we try. Then we get dressed for the day and put on our underwear. Sunday night I set him up with his own drawer like Triston's for his socks and underwear. We made a game of it-sorting through the bin in Caden's room that housed he and Gs. Triston and Grayson took turns running back and forth-sorting and filling G's underwear drawer (we use those collapsible fabric bins as a drawer system). G even noticed itw as the same color as Triston's. So when he woke Monday morning and peed on the toilet he ran right to his drawer to pick out of the Thomas or Elmo character underwear for the day. Then he quickly found daddy to tell him he "did it!". I saw he was most excited about the drawer and not so much about going pee-that thrill was so yesterday I suppose!

On our way to clinic he told me, "I tell Dahter Twon I go pee pees. And Meghan. And Areum and Dahter Dell." I love when he rattles off all their names! I love how he included them in his accomplishments. I was excited, too.

The kid I thought this would be the most difficult to accomplish with...did it in two days.The little boys faced with so much out of his control, took control of 2 yr old-hood and owns it! Big time! Each time I think of it my jaw mentally drops and my heart glows with pride. He just keeps amazing me with every step. This boy is gonna do great things, make people happy in his life for years to come. There is so much in him right now and so much more to come. I just know it!

Just watch-Caden will torture me during his potty training phase! That's it-I am starting him off in a few months just to play it safe. Yeah, right!

As soon as he walked into the main hallway he ran to Meghan to give her a hug. Then he turned and ran to Kwon and did the same. It was another one of those precious moments.

I really think it touched Kwon deep down. Remember he is a pretty serious character but G nabbed him that day. Anytime Kwon was in our room he smiled at G, joked with him and complimented him. He even asked G about his baby brother seeing as I had Caden with.

His counts were a bit better but still low. We drew for a blood culture as well to be sure this bacterial infection was outta there. He was able to get his spinal done and Methotrexate spinal injection as well. Counts are slowly rising.

He even allowed Nurse Noelle to access him. She is the third nurse floating around clinic and she would pop in here and there but now with Jennie on leave it all Meghan n Noelle at it. I was glad she did. He needed to get used to her, too. And she is another awesome nurse. I love her spunk.

In the end, he took a visit to the treasure chest with Areum. We were allowed to go back on oral chemo drugs but only at 50%. We will reassess doses next Monday when new counts come in. He wieghed a whopping 22.7 pounds (thank you, steroids). He did another fine job at clinic and made us all proud.

Tuesday (the day I am finally finishing up this post) was a lazy day for us. Naps and lots of TV. Tomorrow another mother and I are hosting Triston's Easter party at school. I sent the kids to bed early so I could finish up the last minute details. We have 3 different projects lined up. I am excited to do this for him and his class. It is the least I can do for his stupendous teachers and all the hard work they put into each day with him.

Other plans for my spring break?

SEE MY NIECE! Visit my Katie and her new baby boy. And try my best to catch up on laundry and other house stuff. Nothing exciting for obvious reasons. But I really am okay with it. I am home with the boys. That really, truly is all I want in my life right now. To be home with them and focus on them ALL the time. I wish, I wish. But at least I can officially say-I potty trained my two yr old over spring break. Exciting times at the Carper household. We know how to live it up! Thomas style. Up until the undies came out, Grayson and Caden wore the same size 4 diapers! Ridiculous. Two down, one to go! My little rice, you better watch out-mommy is watching you!

Our Boy Wonder

Our own lil superhero!

Tuesday, April 19, 2011

More April moments

Friday, April 15, 2011

April Antics-all in the life of a mommy

Sunday, April 3, 2011

Not alone in drowning feelings, I guess?