More April moments

Field trip-with our matching Lunchable lunches

Guess who INSISTS on climbing over things now. He actually looks for larger items on the floor to crawl over! I raise nutsos!

Grayson

An even smaller butt with no diaper for padding. At least the diaper gave the impression of some meat on him! I think he looks like Grampa with a buddha belly and old man butt.

Twisted Triston

Crazy Caden

Don't you just wanna kiss him all over?! He is too cute for his own good!

It's the NEW way to Connect Four ! He had to wait 30 minutes following the spinal before he could sit up. Areum and her creative ways thought of a new game! He just kept telling her more, more.

What a silly game, Areum!

I love the way he looks at her! He thinks she's better than sushi!

Sedated eyes! I asked him if we were on an island together during his spinal tap. I also asked him how many drinks I had in my hands!

So while Areum tooke the time shifting all the possible boyish toys and some of Grayson's fav characters to the top of the treasure chest to be ready for his choosing...she still dug to the bottom of the chest and pulled out a girlie item. We laughed about it! I explained to her my boys like princesses and kitchens and girlie things. And so he proudly carried his mixer for his play kitchen through the halls and into our van! He has cooked everyday since...mostly peas!

April Antics-all in the life of a mommy

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!

Not alone in drowning feelings, I guess?

If you recall I stumbled upon this mother's journey back in November and have followed it since. I read this post of hers moments before Dr Kwon called us in to be admitted yesterday. I questioned whether to post it here bc I don't want to be a Willie Whiner all the time. I have a job, Charito has a job and we are continously grateful for the good things that do go our way....But after this morning and discussing numerous unknowns w staff I feel intertwined with her earliest mental notes: http://www.team-ewan.com/2011/04/when-things-keep-falling-apart.html Still grateful for all of you and all you do for us...my love always, Sara

Mommyhood

"No one else will ever know the strength of my love for you; after all, you're the only one that knows the sound of my heart from the inside."

"Making the decision to have a child-it's momentous. It is to decide to forever have your heart go walking outside your body." authors unknown

Oh Grayson, I thought meeting your brother, Triston, for the first time kindled these quotes within me...you have tested them beyond my belief. You, your smile, your fight bring me endless happiness and heartache. But being your mommy is a job I would wait in line for...over and over again. I love you, Sushi. The past month (episodes of life and death) and the past few days (seeing all 3 of my boys ill simultaneously) has truly tested me. I am a mom busting at the seams. From runny noses to puke to diarrhea to fevers to irritability to lethargy. All 3 boys have broken my heart seeing them so miserable.

And the mind games-

3 different temp checks every hour or so

which one squirted their pants this time?

what did he nibble on and how much?

when was the last time he drank and how much?

monitoring breathing patterns

puke buckets

laundry-sheets, towels, clothes, thrown out underwear

do we call drs or wait?

hospital-worthy stay or not?

buy stock in gatorade and pedialyte?

Triston def has a stomach virus. Grayson's body is charging hard at fighting it off, sitting at the cusp for fevers with little diarrhea and small appetite. Caden started up today-miserable, slight fever, diarrhea and little appetite. Are Charito and I next? I would have much rather it hit us than them.

I just want to fix them. And when they are fixed it hurts to know that Grayson's "check engine light" episode was temporary, an all but permanent fix. I can't fix him. I am just following the "medical mommy manual" given to me by his medical staff and praying for an exemplary recovery, a perfect prognosis. The unknown houses more than enough anguish in my heart.

More ramblings

• Another funeral today, another ruff one. My dear principal of 30+ yrs, Dr. Catherine Wells, at my school was buried today. It was tearful but beautiful. Such well spoken words, of peace, encouragement and a life well-lived. Such devotion from one woman. Over 60 yrs in the CPS. Amazing dedication and service. As was said today, "Farnsworth will not be the same and yet she will always remain with us. It is her home." And as I sat in church I remembered that that, too was her home. She loved her church. The same church two of my boys were christened at, where I was married and where I will always remember her as well. I remember her attending my wedding. She was always so supportive of my family needs and professional decisions. I will miss her. This was my 4th death in 4 weeks and it does not seem to get easier. Getting hard to breathe, really.
• As difficult as these kind of events are, there are always amazing people around me to hold my hand, ride with me so I am not driving and crying alone, and hand me kleenux. I was filled and blessed with many of these moments today. Reminders of how lucky I am. I love you, my friends!
• A rough day was followed by a rough nite. Poor Triston was hit w the nasty stomach bug that has been going around. And they weren't kidding when they said it comes out of nowhere. All of sudden at 6 pm last nite he began throwing up and did not stop until 1 pm today (so far). He vomited every 40 minutes until today. He (and I ) got no sleep. Any time he got comfy enuf to fall asleep he was up again heading to the toilet. I spent the nite waiting for each bout, turning his body in the right direction to avoid changing the sheets each time, hoping he makes it to the toilet in time. My heart broke for him. And all the while I was trying to keep things quiet enuf to not wake Grayson n Caden. G had a fit bc I would not lie with him at bedtime. He was SO upset. He just couldnt get it. I needed him to stay in his room w Charito while T n I occupied my bed. It is so much easier to clean up puke from our bed than the boys (I feel like that should have been in the fine print when we bought those beds from Pottery Barn-the wood slats below, the fine grooves, the trundle ARE SO FRUSTATING TO CLEAN puke from!). I just covered our bed in tons of towels and peeled them away through the night as needed. Before I left for work this morning (dragging myself out of bed once he and I finally fell asleep at 6 am) I set him up on the living room floor with his sleeping bag, towels and a bucket. Easiest way for Charito to monitor him. Only meant G had to stay as far away as possible (good luck with that) and Caden didn't do any crawling around today. He was on lockdown to avoid T as much as possible. We have been lysoling like crazy and praying G dont get this. His ANC was great on Mondy so lets hope so. I dont care if it breezes through Charito and I -as long as it avoids the sick one and the baby, two of which would dehydrate in the shortest amounts of time. I can't handle that stress right now. It would SO be unfair to them!
• Gonna be another low key weekend at the Carpers. T is sleeping right now. Caden was down hours ago. I hope crazy man G gets the memo to sleep in late tomorrow. Of all the nights Caden was disturbed by the need to cuddle the teething woes away, last night he slept wonderfully, leaving me to concentrate solely on Triston. Grayson whined a bit but Charito took care of that through the night. That, too, was a plus that Caden had a restful night. His teething woes have mostly been taking place near breakfast time when he doesnt seem to know if he wants a liquidy or crunchy meal-all depending upon the needs of his teeth. On nights that he wakes it is just enough to cuddle a bit to fall back asleep and I knew there was no way I was gonna have enough hands to do that last nite while directing puke traffic. I believe the tops are trying to make their way through. Two bottoms are loud and clear! He looks too cute. I think he knows it, too.
• Nurse Jennie (Princess Jennie) had her baby! Yesterday she welcomed baby girl Maggie to the world. I told G and he said, "Oh, I see!" It was too funny. God bless them! She is currently experiencing that superwoman, mommy feeling-how wonderful for her. I am so happy for that new little family!
• We are still awaiting Jack or Charly's arrival...could be any day now.
• I am off to bed. More thought, I am sure, this weekend. Later!

More Maintenance Phase Ramblings and Updates

More venting-Lot on the mind, tons to fill in and even more I wish I could fix:

• The month of March has been a great one overall for all the kids. Big stuff happening round here. G with more energy I know what to do with. Dangerous kind of energy. He really has been a maniac. Jumping. climbing and causing more boy trouble than Triston. Any other situation I would not care-let him get his bumps, bruises, cuts and learn his lesson BUT it is not that easy with him. I wish I could wrap him up in bubble wrap-I swear! He wants to be a typical two yr old but gosh he worries me. It is such a mommy battle! Even his nurses said it is normal to feel this way and difficult to manage in his condition. They feel for me and understand. Here I am in a situation where I should feel more relaxed with my second to let him just be and I can't. It is unbelievably frustrating. Not to mention the typical 2 yr old sibling behaviors. He is constantly hitting T or throwing things at him to get his attention. It is beyond the cute phase. He is such an antagonist sometimes! Can u tell I am writing this while yelling at him to stop doing this and that? He is driving me nutso tonight! I cant even send him to his room like I would do bc he cant be left unsupervised.


• Just Friday afterschool G invented a new game in which he grabs the back of T's shirt and they run together. Yeah, if that ain't a disaster waiting to happen! And it did! But not as bad as it could have been -ONLY thanks to obviously good blood counts. The three of us were in the kitchen and I just knew it was what G was about to play as they were leaving the kitchen and heading into the dr. I warned G to not touch T. "Otay!", he yelled back at me , in his don't tell me what to do tone. I had just picked up the knife to carve the wonderful roast Alysa set up in my crockpot and BOOM! Down G went. I ran in to the lr and there he was on the floor in front of the couch blood pouring out of his mouth. It is always the same damn spot in his mouth that he cuts each time he falls and busts his lip! He has a crooked bottom tooth and it is THAT tooth that slits his bottom lip. It's as if that spot on his bottom lip never truly heals. I could see redness on the outside of his lip, too, wondering if his tooth had gone thru his lip! Ugh! I ran him to the sink. Got ice on it right away. There was so much blood I couldn't assess the damage. He fought me the whole time. Charito was at work. What would I do if his platelets were low, he kept bleeding and he had to get to the ER? I pulled the ice away and checked again. I decided to keep it off long enough to get him to stop crying and see how deep the cut was. I layed off the ice and got him to drink water to cleanse some of the blood away. It would not go away. I left it alone for a few min. Then I realized it wasnt continuous blood, it was clotted blood sitting in front of his bottom teeth. It was gel-like and firm. Perfect! I could not have asked for a better situation. This is what his blood is SUPPOSED to do without cancer! I was amazed actually. It had not happened any other time before since his diagnosis. And he busts this lip at least once a month! Once I left it alone I could see the marking on the inside and outside. If it had not been for good blood counts (which I would not have known otherwise bc we had not been to clinic in almost 2 weeks) and the way he landed in front of the couch when he fell (the couch caught his forehead and prevented him from landing flat faced) I really think that tooth would have gone thru his lip. And I couldn't even punish him (yell, take away toy, early bed) in the moment bc if he kept crying he would disrupt the clots. So, instead I had to explain to T that he was in trouble right now and G was getting in trouble later. Not fair at all! But thanks to good counts again, by later that evening the fatty lip tissue began forming and healing over the cut. That was the fastest his lip has begun to heal in 33 weeks! By bedtime G got his punishment. He did not get to bring any trains into my room "to put to sleep on my ny stahn" (night stand). He was only allowed to sleep with Shell Puppy. They both fell asleep within 20 min. Shortly after Caden woke. But that I did not mind because...


• last Friday was a big day for him! His second tooth cut. And that evening when his big bros were sleeping he crawled around this house til 10 pm. We let him have all the time he wanted. Charito got home from work by 9. Caden has been going to bed by 6 for months now but all of March he had been waking from 7-8 pm ish. I believe its his teething time and who could complain...at least it ain't in the mid of the nite. I give him a bottle fix and he is good to go down shortly after. I swore I saw him scooch forward while T and I were doing homework that day but convinced myself I was seeing things. But as soon as Charito put that Ipad down on the floor he was off! He has an army crawl like Grayson did . It is adorable to see. He even revs up in a circle formation before heading straight toward his objects of desire. Within 20 minutes of point A to B stuff he managed himself all over the dr and lr. So proud of our littlest. He will be 8 mos old on Saturday.


• We only have one picture of Caden framed in our home. I HAVE to change this. And I started to. Charito bought me a photo gallery kit for xmas but we just havent taken the time to get it all set up. Just yesterday Maria passed on a $20 credit to Shutterfly for me and I created a canvas art with the boys. That will make 2 pics of him hanging. It will increase soon!!
• Monday we went into clinic for counts. Great counts at that! ANC was over 3, 000. Havent seen that in a loooong time! Platelets looking great (hence the fast healing lip described above). Hgb was at 8.1 hovering at that cusp. But since he is not getting slammed with tons of chemo the next week it would most likely climb in a day or so. He is taking a chemo drug every night but is not scheduled for a big slam like Methotrexate intrathecally til April 4th.


• Even though March has been great for the kiddos it has continued to be a rough one for us adults. Papac gave us a scare the other night and we were very much concerned we were losing him. Very stressful. Then I finally had the chance to chat with Maria about Teresa's final days and it broke my heart to hear. I was so glad we had the chance to vent it out together but it sure does not make the pain any less. That same day (yesterday) I was told my principal/boss/friend lost her battle to cancer. I dread the aura of our school the upcoming days. We will all be hurting for sure. She may have lived 90+ years but a life lost is still a life and a life of cancer is so unnecessary.


• I stayed home from work today with a horrendous head cold. I went to bed last night w a pounding headache, blamed it on all the crying I did. But when it woke me several times in the night and all 3 kids woke with their own issues off and on I knew I was doomed today. But it was okay bc it gave Charito and I a chance to talk and just be. So much to sort through in our heads and the time we are given to do that these days is so limited. The gaps are so much tighter when you are dealing with more than one sick person in your life. When will the chaos and disorganization end?


• Overall Triston has been great. No issues at school. Thrilled to share EVERYTHING about his day from (literally) beginning to current moment. I really do love it. What I dont love is the emotional growth spurt he is going through. Once again, I can textbook rationalize what and why he is saying and doing what he does but I will always question to what extent cancer fits the equation. It hurts me. I dont think I ever wrote about it but months ago I had the first verbally hurt moment with him. He was upset about something and in his upset he told me "he wanted to break my heart...make me cry...have a heart that is broken and can't be fixed". Huh? Sorry bud, cancer already did that for ya! But it still hurt and it was a particularly emotional day for me to begin with and so I cried. I sent him to bed and I cried as I did the dishes. He is my first and there is something about that first child that you treasure forever. You don't favor them, just treasure that "first" everything feeling. And so hearing those first hurtful words that we all either muttered or whispered or yelled one day ourselves really hurt me. After it was all said and done I happened to check my email before bed and received an email from one of my parenting sites and it confirmed that this is when some of that talk can begin. It didn't matter if it CAN happen, I didnt want it to happen at all. Ouch! Then last week he told me he "wanted a new mommy" and he "wanted to live in a different house". Tonight he said " I hate when you send me to my room...I am just gonna punch you so you cant carry me to it". Nice, huh? Yeah, as much as I can shluff it off in the moment to deal with the situation as calmly as possible (and I will be honest it is not always calm) it still hurts. And I can hardly deal with it as calm as I would TRULY want to bc of Grayson. He gets so involved-yelling at T to _______(insert whatever I just asked T to do). Like he has no guilty involvement at all? yeah right! He is usually the cause. Or G has to cry right along (and in perfect tune and rhythm) to Ts shrieks. Or he follows us and gets right in the middle of it, causing me to be even more wary of his surroundings and trips and falls. And Caden? Well, he just gets dumped somewhere safe so I can get to the other two (whether he is upset or not). These heightened moments of a week get really old really fast. We are all stressed, going through the growth spurts we are supposed to go thru, and yet there is no break or free pass to make it any easier. And when one kid is upset the other either chimes in with his own pissations (its a word!) or that is the time the usually upset kid (Grayson, of course) is happy as a clam and I can't enjoy it to its fullest bc I have another fire to put out. ugh!



• Like tonight-while T continued to cry it out (which I have no problems with, we all need that once in awhile) Grayson was actually open to a bath. I did not have to fight him. And he was willing to take it on his own without the bribe of Triston time I usually have to use. He was a big boy in the big tub doing it all on his own. No screaming battles. Ever since his diagnosis and his port was revealed to him he has hated baths. So here I was with an emotionally frustrating evening, but I still got this moment. And I pushed it even further...I added Caden into the tub, too. G loved his companion. It was Caden's first big boy bath (the porker dont fit in the sink anymore) and he thought it was really something. It was so odd to look into the tub and only see the two littlest in there. I guess Caden is hitting milestones that will branch he and Grayson closer. I am looking forward to that. I even tolerate the disputes G has with him ever since Caden's mobility. G has a hard time accepting Caden's recent access to everything and is slow to allow him any train play. Poor rice! He has watched these boys play trains for mos now and what was the first thing he did once he was mobile and in reach of their trains? He put any train he could grab onto the tracks. He KNEW that was the where they were supposed to go.I loved seeing that mind of his go! G is just gonna have to learn to let up. It's called karma, dictator G!



• I am scared and worried. I worry everyday about how my motherinlaw will phase thru this all. When my fatherinlaw will leave the hospital (it has been over a month now). Typically deaths come in threes. I hate that saying but it has been oh so true in my life. My principal is the first of a new set. A new set? How ridiculous, but true. This was my fourth death in 4 weeks. I really dont want to hear about anymore. As my close circle of friends and family have discussed-we are tired of so much "heavy". We need a break from it all. And for us Carpers-each time I think we can recover and regroup we are hit with something else. It is just the way 2011 has played out. I know there are better times, easier times ahead for us. And maybe we need to get past the muck first but in the meantime I would like a bit of a breather, please.



• Right before Grayson's diagnosis he was really enjoying any kind of sushi. Triston loves it, too! Now G cannot have any raw fish. Whenever we order sushi it is quite the upheaval. But I finally (after months of torture) came up with a switcharoo. He noticed that miso soup always comes with sushi. I bought some tofu two weeks ago and made my own miso soup. And because he simply made the association that it arrives with sushi I was able to pass it off as sushi to him. He has loved his "new sushi". No more tantrums over real sushi bc he considers this HIS sushi. All fixed! One point for mommy.


• Today (Wednesday) Caden crawled to meet me at the door when I arrived home from work.Then he raised his arms up for me to grab him. It was precious. It is what I needed after an emotional day at work. I was right, walking into our school office was not easy today. So sad.


• Grayson's hair is really starting to come in again! We tease him and ask him how many sprouts he has when he wakes in the morning. His number varies. Today he told me six! yesterday it was 14! Too cute.


• I am taking full advantage of Grayson's good appetite in the past few weeks. I don't care how late I am up baking veggies bc they are getting all munched up by him! So I double duty it and cook for he and Caden. I bake up squash and sweet potatoes and anything else to take advantage of his willingness to consume almost anything. I just set aside bigger portions for T n G and then smaller smashed up/pureed portions for Caden. Makes me feel good! This week they are loving up the squash, sweet potatoes n avocadoes. I have no idea what is on next week's agenda! Keep you posted!

And thanks for reading!

Maintenance

We began the Maintenance phase a week and half ago. Here is how it has played out so far:

Once again, try and tell a 2 yr old he can't eat before a spinal tap/injection! Chips in hand, tantrum on the floor outside of clinic doorway. It was not until I told him he could pay the deskclerk for me and see Princess Jennie that he got his ass up and mosied on in. Then had to remind him that only "Dahter Twon" can say "yes, you can eat now!"

All of a sudden we have favorite requests for shirts when dressing in the morning. He calls this one his "Gold Rush shirt".

Steroid hunger kicked in! When he would ask for a particular food there were many times I had to tell me I did not have anymore. He came up with the idea that I "have to buy some". Then when I told him later bc we could not leave the house his response was, 'Tell daddy to buy some". He then asked for paper and colors to make a list. After he did some writing I was DIRECTED to record his dictation. See below...
It was adorable to see his wheels spinning. He was truly naming foods he typically has tastes for while on steroids. This was some serious list! He even attempted to help me spell them (like he overhears Triston do). Then when he ran out of food options he told me to just write letters down to "help daddy read".

We did some sleeping. Notice Shell Puppy. I threatened many times to take that thing away the past few days bc he just would not calm down or SHUT UP at bedtime. Too many times he woke Caden with his antics this week! Frustrating. I hate daylight savings!

I caught a pic of Caden's first pass out in the high chair! Yet, he still kept sucking away at that bottle.

We ate! Don't ask him to share either, not gonna happen!

Triston and I rearranged the living room. It is growing on me! I NEEDED a change!

The boys like the placement of the chaise! Cuddlebros.

And Triston got funky with his pajama choices. Old school tshirt, xmas boxers and ScoobyDoo grippy sox on a day it was 30+ degrees out. He is a character and a half! Even the pose was necessary in his book!

That is all we got so far...been a hectic, adult-crabby week. Lots of adult kinda stress going on. Tiring decisions, errands, hospital and dr visits for Mamac and PapaC and still trying to keep up with the everyday crap. Kids in great moods until the bewitching hours of 4-6 pm, except for Caden for which someone could poop on him and he would laugh at it-wierdo ( I hate it!!!). Grayson is eating me out of house and home, Triston is having great days at school with tons to share with us and Caden is attempting to crawl. We keep moving along...