We went to Little T's graduation ceremony where he didn't graduate from preschool, but some of his classmates did. Little T sang the songs with gusto.

Special K graduated from Kindergarten complete with handmade paper graduation hat and a procession to Pomp and Circumstances. As corny as it sounds and I LOVED it.

Yesterday we had a picnic with Little T's classmates at a park.

Hermione has been an angel sticking by my side and being a calm presence in all the excitement. But she's still a dog and reminded me so yesterday. Lesson learned: Dog sniffing a lot near bathroom and looking at you BAD thing. Tell dog no very firmly. Then dog not take drink from Little T's potty complete with log. At least she did not eat log.

G-tube removed. Healing not complete, but so far so good.

Toilet training is also progressing.

I submit offerings to the healing powers and the potty training elves.

Hooray! Round 4 is over and we "got away" with just wrapping the arm and aspirin.  NO chemo or steroids this time.  I pray his tumor continues to shrink and there is no round five. 

Tonight we will remove his g-tube. If all goes well, it closes up on its own. The alternative is surgery, minor to be sure, but probably general anesthesia.

Your continued good thoughts and prayers and vibes have helped a lot and we and hope that they help prevent round five and help his g-tube removal go well.

Thanks to everyone for their words of support. They helped me so much.

I went with Hermione who was an angel in every way a dog can be. She waited patiently with us while we waited. She lay perfectly content and quiet unattended while I went into the OR and held Little T's hand. They had a "hall monitor" to watch Hermione who took a nap. She knew what her job was and helpfully extended a paw past the door so I knew she was still there.

Otherwise all the other hospital staff were kind and unperturbed by a dog. Carly this golden retriever service dog kept being mentioned or was Carly the human? Anyway the idea of a dog in the preop room and recovery room was accepted with the same calm Hermione brought me.

We tried no pre-anesthesia this time. Risk blah. The anesthesiologist who was German tried to compare it to the risk of driving here. Not helpful after I attended CCI class with a quad who was in a car accident. I thought of the autobahn and I stopped listening. Then I asked "What's the difference between pre-anesthesia and no pre-anesthesia?" The patient relaxes more. In other words...nothing for Little T. He just complains he feels dizzy and is NOT relaxed.

The only difference I could see is that Little T struggled for 5 seconds longer under the gas mask. The 5 seconds cost me..oh god that sight never gets any easier.. but to him they were nothing I'm sure.

Back to Hermione. She walked with me and helped me notice my left knee was locking up dystonically so I did not walk on it a lot as I wanted to do. Instead we sat outside in the sun. And she took a nap. Seeing her sleeping comforted me. It allowed me to think of sleeping as not a terrifying thing.

Head and left arm scanning take a long time-- 2.5 hours. We got some food and I ranted about dogs while Hermione snoozed on. C wanted to read but took a clue that I needed to rant.

We had the same buzzer with lights as you get in a restaurant. I am sure there's something witty one could say. Finally the buzzer rang. We raced upstairs just in time to see Little T wake up. I squestered Hermione in a corner where she lay patiently waiting while we fussed over Little T.

He complained "my arm hurts" and "take it off" about the IV on his hand. I sympathized while marvelling that he could speak so articulately. Though his voice was hoarse from the gas. I marveled at the miracle of my son alive and vital after losing the struggle with the mask. Then we got home and he start whining at C about making beer bread. He whines ten times more with C and I lost patience and went upstairs. I'm no angel.

Tomorrow anesthesia. I talk calmly to the MRA nurse and the anesthesia nurse. I think this will be number 13 for anesthesia. My lucky number. I try to push away the terror of seeing him go under. Waiting for him to return.

I think about if I should bring Hermione for practical reasons - I tend to stumble more when stressed and she gives me focus. And emotional - she is soft and sweet. C helps but he doesn't like being fussed over like Hermione does.

And the reasons not to -- she is large and the preop and recovery areas are small. I shy away from how well I know those spaces.

I walk around and around these questions. I would walk up and down the hospital halls sometimes but I'd feel less silly walking with a dog... I'm not pacing. I'm walking my dog. And with Hermione I am not afraid I'll take a tumble on the slick floors drawing unwanted attention to myself. But is a dog too much unwanted attention?

I have almost decided...but deciding means I have to think about something else.

The toilet trained child is less work. Toilet training however...cleaning up the results of accidents especially the more solid variety...extremely messy and a lot more work. Hermione offered to help to clean up. I suppose I should have appreciated her offer but I did not want to deal with the results of such help.

Last night and today I didn't quite have my access for Hermione denied but called into question.

Last night there was a pause as we were waiting to be seated at this restaurant and this waiter said out loud "No... service dogs have to be allowed in restaurants." We were seated by the door. The kids behaved atrociously the worst I've seen in a while. Getting up. Both C and Little T spilled full glasses of water. Hermione snoozed quietly except for when cold water was splashed on her. I made her DOWN again. Another waiter came over with a cloth and said "Don't worry." Hermione settled near the wetness then with a sigh settled on some ice. She has resigned herself to a life of cold water.

Today I had to take both kids to the dentist and as we were walking in the dental assistant said "Dr [] says pet dogs aren't allowed." I said matter of fact "She's a service dog and she's allowed here. It's federal law." Nothing more was said. Hermione sat near Little T then I moved her and she sat further away and the dental assistant said "Thanks" Hermione took another snooze.

Little T screamed partway through the process tired of having his teeth cleaned and examined. The steroids have destroyed the enamel in his back teeth so I imagine it feels weirder than for the average child. Hermione helped keep me calm.

Thanks for your good thoughts and vibes. It helps because it's easier to write this stuff. Saying it out loud makes it too real.

I feel less emo this morning as the swelling has gone down and the heat. Unfortunately with less swelling I can feel new lumps which are probably blood vessels that I didn't feel before. Damn.

C says he didn't give Little T aspirin on Sunday. One frigging day. It comforts him and makes me feel things are balanced by a hair.

I hope that he's bigger and stronger and won't need steroids this time and certainly not chemo.

Last night Special K was talking about Pokemon "involution" meaning evolution. Involution is the mysterious process by which the tumor starts shrinking again. I hope involution has started and its brief evolution or growth was just a day. That's never how it's worked. But then this tumor has never worked the way "it's supposed to". I've heard "it's not supposed to do that" so many times. Can't it work the way it's not supposed to and suddenly start involuting again with just going back to aspirin. You don't need steroids.

Little T understands much more this time. Far more than I probably know. He was extra snuggly this morning.

I just have to dump my fears and worries here and live in the present.

This morning Little T's teacher called and said that Little T's left arm was red swollen and felt hot. This teacher is always matter of fact and patient and delivered this news calmly but she called first thing.

I called Hematology and told his doctor the news. I said I'd bring him in if the teacher's description was correct. I hoped anyway that somehow it was Opposite day and the teacher was exaggerating. But no Little T had hot sausage arm. And was fussy in that way he has when arm hurts.

The Hemo doctor wanted to rule out a fracture and so his arm was x-rayed. I have never hoped for a fracture before but I did and knew it was futile. Bone structure is fine. Swelling looks like blood vessels. A pause as the doctor tries to hope too.

The swelling and redness looks all too horribly familiar. The start of Kasabach Merritt Syndrome again. It's too early to say for sure and nothing is being done. Well okay another MRA which means another round of anesthesia. Seeing him go under is a terror that never dulls.

But back to the Hemo clinic where now Little T can play the Ninetendo. Kinda. Hermione was there and was helpful. I want to whine that Hermione was supposed to make things better. My magical companion.

I said at the Hemo clinic "I have a bad feeling about this." I still do. I want desperately to be wrong...for once.

We take photos of his left arm. Another familiar thing which we will go back to doing everyday. New twist is now Little T hates it and protests.

I want to shout "Can't the kid grow and not have this red monster grow too?" I want to cry but I don't because that would confirm my worst fears.

So let's have it be Opposite Day where I'm wrong and everything will be just fine. I hold on to that hope.

And new thing. We will now all go for walk with Hermione. Maybe that will be the spell that will break the red monster's hold. His arm grows slightly cooler and I hope and then heats up again. Walk to cool down. A walking spell. A walking meditation. It's all I have new. That and cod liver oil imported from Norway which he asked for yesterday. It must be new and different. Not the same.

Little T is suddenly 30 pounds. He's grown in all ways. -- He looks like a three year old instead of a two year old. This may explain this week's bout of baby talk.

I'll try to get a photo up later.

Every night Little T and Special K have a cuddle with me.  It lasts about thirty seconds to a minute.  Every night I ask them "What's your favorite part of your day?" "Having my cuddle" they answer quickly.  They also tell me other good parts of their days.

Usually Little T says "Playing with Cynthia."  C said "you always say that and you didn't even have preschool today."  Little T replied very seriously "Cynthia is my best friend."  Wow.  He has a best friend at three years old.  I don't think Special K started having them until she was about 4 and a half. 

I put up this photo deliberately, because they're far older now.  I need to put up their Christmas photo, but too busy with other things.  

My boy will remain helmet free in the playground and be allowed to wander free.  I do have to write a note for my boy giving my permission. 

I do feel obligated to add his safety issues on playground equipment which a helmet won't help.  He still requires close adult supervision there.  Now if only my headache would let up so I could actually write decently.

He is still receiving special education.

He's receiving occupational therapy as part of California Children's Services which treats kids with physical special needs.

Overall good. He got on and off the school bus like he's done it every day of his life. No tears or anything. He just sat there as he got strapped into the little vest. He was the last one on the bus.

When he got home he didn't want to talk about school at first. Typical. The bus was 20 minutes late due to a breakdown but the bus company did call me and his teacher.

His teacher said that he "didn't want to go along with the preschool routine at first but was persuaded." That's my boy. ;)

Later he said "I don't want to go anymore. I don't want to try." He denied meeting anyone including his teacher.

It means that preschool challenges him which is to be expected for one's first day of school. I was worried he'd cry or be bored. He clearly experienced neither feeling.

The neurologist in charge of his EEG study came by at 8:30pm last night after testifying in court somewhere 1.5 hours away. He said his preliminary finding is that [Little T's] EEG is "completely normal." Hooray for Little T! :)

He has a bright red head wrapped with coubain and covered with wires. He's there 1-5 days for extended EEG testing and after talking to the epilepsy neurologist what I want is for him to do things that have brought us there

1. Sudden falling with no attempt to catch himself

Now thanks to the fact that we've talked to his neurologist we've labeled this "going offline" since he claims he's not dizzy and now he sometimes says "I went offline" when he falls. He also says "I tripped" or "I fell" too.

However now he sometimes suddenly sits down

and now sometimes he demands a hug or to be held. Fine and good when tired or cuddly but strange when asked in the middle of intensely playing with trains.

So we want him to do his thing and for the doctors to say "It's nothing. Now go home." Never happened before with Little T but how about just this once? Please.

And may I also add that my boy is damn smart to figure out on his own how to cope with "going offline."

Today we went to Little T's 3 year checkup. I have never seen him so grumpy to be at the doctor's office. He did not get his catchup Pediarix shot because if he gets a fever now we would not know if it was from the shot or because his g-tube site is infected from the surgery.

The boy is still growing and gaining weight. He's now 92.5 cm (although I'm a bit dubious that he was over measured due to the strange measuring technique used) The initial measurement was 90.5 cm. I think he may have gained some weight to 28lb.

We got to answer three yes in the developmental checklist. Hooray.

C and Little T went to the ER at 7pm and Little T got admitted to the hospital. At 1:30 he had a minor operation to reinstall his g-tube. We emerged from the hospital around 5:30 with a new g-tube and a Little T very happy to be out of the hospital.

We then went to Special K's Back to School Night which was informative. Soo tired.

I also started looking at photos of CCI dogs again.  I do this both as a way to distract myself and also because I'm aware of the countdown until the next Team Training in November.  I try to remember the power of taking my time.  I realize that for a long time my cat Mori had this role for me in my life.  He would sit in my lap and purr and I would sit there and pet him -- slow down.  Then my children wanted to be held a lot which I alternately liked and found literally hurtful to my wrists.  Little T wants to be held a lot but never for long.  Special K sometimes wants a brief hug and has her nightly cuddle but it's also short.  I no longer have the 1/2 half "enforced" sit-down of breastfeeding or just holding a nonambulatory child.   I think I need it.

Yesterday I sat down in the park with the kids.  For the first time since Little T started going to the  park I wasn't really in super vigilance mode most of the time.  I relaxed because suddenly Little T can play in the 2-5 year old area of the park by himself.

I also note with some irony that the command to tell CCI dogs to relieve themselves is "Hurry"  Clearly hurrying is not something a CCI person is expected to do otherwise.   

Update: Tired.   Fixed typos and one factual error.

I took Little T to his language evaluation and the SLP there pronounced him typical. He still has his problems but apparently he will just get over them with a little help from me and preschool.

As you may have noticed from past posts I had been coming to the same conclusion myself beginning right after I scheduled this eval. Little T suddenly decided to catch up a whole bunch on language especially in the last month after months of literally halting progress. I decided to keep the eval in case the problems turned out to be therapy worthy since my comparison point is Special K who started talking very early and very often. However my children ever delight in making me look silly.

I still remember my pediatrician asking me at one of Special K's first appointments. "Can she point?" "No" I replied since up until that time she never had. "Where's Elmo?" the ped asked and lo and behold Special K pointed to Elmo like she had been pointing her entire life. My jaw dropped. The pediatrician smiled and checked "Can Point" on her chart.

It's still sinking in to be honest. Right now he's quiet because he's watching tv. Yeah bad mom. TV clearly retards speech. But his speech/language is like his fine motor in his right arm. For a long time he had a depressing litany of delayed delayed in his tests "he needs therapy now(Mom run around and get him some)" and then after months of therapy suddenly he was typical typical typical "Don't worry mom". If his fine motor of his right arm is anything to go by he'll be singing complete songs soon enough. He loves songs and I have to say he can already carry a tune better than his sister. With the right help the healing and resilience of children is truly miraculous.