To my beautiful boy, happy birthday!

So this past weekend, Asher hopped on one foot, five times in a row before losing his balance. However, he could not stand on one foot for more than a second; he really struggled with finding a balance point. On the flip side, Asher's sister, who is one year younger, could not hop on one foot more than two times, but she could stand on one foot for a long long time, well over a count to 25.

Asher was back to school today after two full weeks off. He had a great day, I can tell.

Next break is a four day weekend, soon, and he'll turn 6 then. We're still trying to plan what to do. A little driving trip is probably in sight.

Since I wanted to put a baby gate around the Christmas tree (to protect it from babies and pets and the babies and pets from it), I moved part of our sectional couch out of the corner of the family room, pushing it up against two other sections of couch, and we put up our tree in the corner. It is beautiful. I like it. I want to keep it up ALL year. Anyway.... So, now there is the high back part of the curved sectional piece kind of sticking out in the room. Asher likes to sit up on it, while he and Alexa play on the computer at the desk. But, he also likes to stand on it and balance and jump off onto the floor below. My son has never jumped off of something that high (3 feet?) off the floor. Mainly because he couldn't do it before. But, now he can. Two weeks ago, or was it last week, anyway, he wanted me to help him on the monkey bars, so I did. But, mostly he got up there, hung from one bar, and then realized he couldn't move to the next bar but was scared to let go. So, I taught him to not be scared. I told him to jump down to land on his feet and when he hit the ground to bend his knees. We have more than four inches (probably almost six inches under the monkey bar section) of rubber mulch under our playground, so I'm not too worried about him jumping down that far. But, I am a bit more worried about him at school, where there is just sand, and a bunch of 'wild' kids, so I wanted to teach him to fall safely. And, he just kept doing it, over and over again on his monkey bars at home. Climbing up, hanging from the first bar, then letting go and dropping to the ground. It was after that, that he started to jump high off the couch sectional, as I described above. Every time he did it, I cringed. Tonight, I started to get mad a bit, because now his baby brother, almost 17 months old, is starting to imitate him. Ah....now my stomach is in knots. Hello. Lets not jump off the couch like that. Asher always did like to run and jump on the couch like it was a trampoline. I did a scrapbook page one time, titling it, "Let them be little" after the song. Andrew is starting to really like to walk along the couch, now, too. Guess that is what I get for buying such a long sectional couch like I did eight years ago.

So, about his physical strength....when I watch him run, after he gets home from school, he takes a huge, huge stride and really swings his arms and really moves his hips. I'm amazed watching him. He has come home from school and said his friends are always faster than him. He says, "D and B just go running right past me and get way ahead of me." The thing is, now that he started eating his lunch again (he went a week or so without eating and he was getting physically exhausted), when he gets off the bus, he wants to walk home, even run. Alexa wants to run with him. If she gets anywhere near him, from behind, he turns around and yells at her to, "Get away!" "Stop it!" And, I'm not sure what the right thing to do is, but I want him to win, sometimes. I ask Alexa to let Asher beat her home. And, he is fast, but after a full day of school, come 3pm, he's pretty tired, physically. If it were in the morning, I think he could beat Alexa in a running race. Anyway....

He's growing up, so fast, right before my eyes. If I ever doubted my decision not to put him into formal physical therapy, I don't anymore. One half a year in kindergarten, two to three recesses a day, PE every eight days I think it is, has helped him so much! And, I'm not taking him out of the classroom for PT at school, where he is learning to read and write, which at this point is more important at school since I struggle getting him to 'study' at home. He has so much more confidence now that he's in school. He's gaining independence. He's maturing and amazing me, every week.

Two more days of school and second quarter is over. He then has two weeks off for winter break. I'm also excited, because in January he has a couple of days off of school, and they happen to land right before his 6th birthday and right after, giving us a long four day weekend. So, we're hoping to take a little trip. We'll see how it plays out.

Here's a conversation while doing 1 1/2 hours of kindergarten homework, at the kitchen table, right after lunch. (Let me add, the reason there was so much homework is I had him do about 85% of the December homework as he was in a good mood and cruising through it so fast. And as of 12/16 he is all done with his December homework now.)

A "Why did God give us blood? I mean, why is there blood and then skin and then our eye goes in there?"

me thinking....uhhh, I dunno. OK, I'm a mom, I know things, make something up.

me "We have to have blood going into all parts of our body for our body to be strong and alive. Our heart pumps our blood to all parts of our body."

A "What if our heart stops pumping the blood?"

me "We would die. We need our heart to pump the blood so we can live."

A "Oh. Well, I hope my heart doesn't stop pumping then. It is going to pump and pump and pump. I'm gunna get old... Ah... (shaking his head a little to change his mind) I want to live forever."

So, I think I have mentioned in this blog before that our son Asher has had sleep issues since he was very young. Mostly since we took his crib away from him at 18 months old and gave it to our 5 month old (instead of buying a new crib). (Note: We didn't make this mistake again the second set of kids 14 months apart; we now have two cribs.) He never stayed in the toddler bed. He always ended up in the king bed. This problem resulted in my not sleeping in my king bed because I wake so easily (and I can be miserable to be around when I don't get enough sleep).

In any case, we went from having sleep issues with our child, to finding out he had a brain tumor. OK. When a kid with a brain tumor lays down, the pressure builds up in his head and he gets a headache. Yeah, that would make me get up and cry and scream and crawl into bed with my parent, too. Although, hard to say, when did the tumor start growing?

In any case, we have never been real strict with Asher about staying in his own bed. I always figure, I just want him to sleep.

Once done with cancer treatment, home, and no more cancer in his head, things were okay. He still woke up in the night and found the king bed. Most nights. Some nights he actually slept in his own bed all night and we would be shocked. In the end, Scott didn't care. I was happy in my own bed in my own room; I didn't care. We're all good.

Now, something new has started, though. Worth noting and now tracking, to see how long this continues.

Monday night, November 17, 2008....this is when it began.

About 50 minutes to one hour after going to sleep, every night, Asher wakes up crying and screaming. When I go into his room, he is crying and screaming uncontrollably. He looks scared. I look into his eyes and I can feel the fear. He is all sweaty, but does not have a fever. After eight nights of this happening, I realized he was asleep, not awake. Any words he spoke could not be understood. One night he even pointed as he mumbled something, eyes as big as they could be. But he can't have a conversation with me. He doesn't seem to hear me or answer me. He shakes a bit. He continues to cry and scream, whether picked up, taken to the toilet, taken downstairs to check his temperature, etc. It does not last too terribly long, maybe only five minutes. And, in recent nights, he is more easily woken and if I give him a drink he goes right back to sleep, instantly. In the morning he never talks about these 'episodes.'

After half mentioning this to a few people, including a nurse at the hospital after his MRI, the term "night terror" was brought to my attention. I've read some on it tonight and it sounds exactly like what he is experiencing, however, not too far into his sleep. About an hour. As for what is causing it, not really sure. However, he has been sick with colds and ear aches/infections, which may have coincided with this starting. Also, yes, he tends to be quite tired by the end of the night, but he goes to bed around 6:30pm on a school night and 7:30pm on a non-school night. He's getting 12 hours of sleep on a school night. I have a strict routine. Especially now that Scott works late into the night, I put the kids to bed and they know the routine.

In the reading I did, it says this can be common in kids his age, and he can outgrow it....that would be good.

"Give thanks for sorrow that teaches you pity; for pain that teaches you courage - and give exceeding thanks for the mystery which remains a mystery still - the veil that hides you from the infinite, which makes it possible for you to believe in what you cannot see."
Robert Nathan

Lots to be thankful for, this year, each day. I could write a book on what I am thankful for, but I won't. Not here.

I do want to say I am thankful to the hospital staff for making Asher's Wednesday MRI go soooo smoothly. Very happy with the care they gave him. We, of course, are still waiting the results, and most likely will get them at clinic mid-December.

I'm also thankful for my mom and her wonderful cooking. It was nice to relax and enjoy and I know she was tired, hot and feet hurt from cooking and I appreciate her so much! We all were stuffed from Thanksgiving lunch.

I'm also thankful for my sister and her husband for making the 13 hour drive down to visit us. I could never image the chaos of getting ready to travel with 4 young kids or even actually doing it. I miss them and love seeing her 1-2 times a year.

I'm thankful for my hubby, for sooooo much, but this past weekend, for letting me sleep in two days and for taking care of all the kids, alone, Friday so I could have an adult day at my mom's house.

I'm also thankful for those of you still coming here to check up on my boy, Asher. He's my world, and knowing he's a small part of your world means so much to me!!

Asher is doing well! However, he has started a low grade fever, yesterday, (100), and just could not hear us the last two days. He only complained about a little pain in an ear, but asked which one, he couldn't say. He never needed medicine for the pain or low grade fever. I am sure he has a double ear infection, or at least in one ear, so off to the doctor tomorrow. He still has a runny nose and is coughing, and this just seems on-going, and on-going. He has DIBELS testing, at school, starting tomorrow (Dec 1-3 I think)....so....not sure....but I don't think I'm sending him to school tomorrow until we see the doctor.

We have some Christmas lights up, outside, but not the tree yet.

update 5:30pm....no sooner than I finished posting this did a fever spike....102.7 right now....and his left ear is hurting where he's in tears....so....he got ear drops and motrin....trying to decide if we'll go to a nearby walk-in clinic, which we think closes at 8pm, or wait till 8am to go to the pediatrician's....he fell asleep on the couch

update 4pm Monday....went to the pediatrician this morning and Asher has a double ear infection....starting Cefdinir tonight

Asher is 19 months post-transplant now. He had his second set of vaccinations, plus he got the flu shot. He got 5 pokes. He wasn't too happy about it, and he says they made him feel sick. Hopefully he'll feel okay by tomorrow morning.

Even though he has a little cold, he has no fever, and he's sounding good. He has fluid in his right ear, but no infection, unlike his sister, Aubree, who has a double ear infection again.

He hasn't missed one day of school this 2nd quarter, although, I did have to pull him out of school 25 minutes early today to get to his appointment.

Lately when he gets off the bus, he runs part of the way home, sometimes while pulling the wagon. Amazing the strength and growth in the last three and a half months! I'm just so proud of him.

One week until his MRI. I scheduled it for his day off of school, which is the day before Thanksgiving.

Asher and I played Legos, for about 7 hours, over two days, this past week. As I watched him putting together portions of the Fire House and Police Station, I was thinking, 'We have OT right here at home every day.' He put together a police motorcycle and police car all by himself, following the instruction booklet. Only a couple of times did he need help putting together the tiniest of Lego pieces. I had fun; he did, too!

Asher had a 103 temp through the night and 104 by the time we got to the pediatrician at 9:45am. Nothing we did would bring it down. He's on antibiotics for a double ear infection, starting today, for the next 10 days. Right now (12:45pm) he's asleep on the couch next to me. So, he's missing school today, and tomorrow.

The doc had flu shots this morning, but we're going to wait till his ears are all better. His next set of vaccines are due in three weeks, so we can do it then. Asher will need two half doses of the flu vaccine.

update 3pm: at 2pm, when the Motrin wore off, Asher's fever spiked to 107....why is it that Asher has to have fevers that go so high....they freak me out....

I started thinking this morning, as I am researching and thinking more about Asher at school....he comes home from school a lot, talking about getting knocked down by a kid. It has happened so many times I have lost count. Yesterday he said, "A kid knocked me down into the concrete. See my knee." He told me he didn't even know the kid (in the past, he'd name the kid, and I recognize it from his class). Yesterday's knee was actually scabbed, so I could tell it had bled. But, he said it didn't, and that he didn't go to the school nurse to get a band aide.

I was thinking back to what the principal all said to me. One of which was how Asher's teacher was concerned about his body movements during transition, arm movements, and speed. I assume going from one class or activity to another. I'll bet Asher gets plowed over by other kids, who are usually always running, excited to get to where they are going.

There's a huge part of me that wants to act like cancer never invaded my little boy's brain.

That has been hard to admit to anyone.

When I ( try to ) forget the past, it is easier. Coping. Life.

Like Asher said when I asked him if he ever tells anyone he had cancer, "It's a secret."

I just wanted him to go through life like he didn't have to explain anything, he didn't have to have excuses for anything, that he was just "normal," like any other boy.



I just got off the phone with the school principal. I was holding my breath until she said, "Nothing is wrong at the school."

Asher's teacher has talked to her about Asher. Her main concern right now: Gross Motor Skills (bigger movements — such as running and jumping — that use the large muscles in the arms, legs, torso, and feet — whole body movement).

The principal wanted to know if he was in therapies right now. I gave her the run down of the evaluations we had done and that they weren't all back yet. I did tell her that I just got back the PT one and the conclusion is that he is within normal limits and doesn't need therapy.


Interestingly enough, clinic was yesterday and I was asked, "Has his school called yet?" I said no. So, I guess a day later and things have changed.


Now I have to face reality again. I need to get outta the fog and stop pretending cancer didn't happen. When I do this, sometimes it is hard to stop crying. Right now the tears are just flowing...and flowing...

Makes me think about how Asher probably feels when he is at clinic and people talk about him, look at him, make a fuss....

We don't want to talk about it.

But, we have to.

I have to start the process to get the IEP. I'll be working on a letter to the principal this week.

So, I took Alexa on a three day weekend, to Atlanta, this past weekend. Very similar to the one I did with Asher last year. And, it got me thinking....

Last week we finally got the report back from the PT evaluation. Her conclusion? He is like any other 5 year old. What? What a bunch of crap! Sorry. The whole time I read the report, I got more mad by the second. Who is she comparing Asher to?

Anyway, Alexa ran around Georgia doing A LOT of things with me, all day long, from the time we would get up, till 14 hours later (or more) until sleep time. No complaints of being tired, that her legs hurt, that she couldn't walk, that her feet hurt, etc. Nothing. Three days of go go go. She never rode in a stroller; I didn't bring one. I never carried her; I wouldn't be able to anyway. Not only did we walk a lot, but I had her walking very fast, especially yesterday when we toured the entire Atlanta zoo in the morning and then the entire Aquarium in a couple of hours before heading to the airport.

Been thinking....

Since Asher is my oldest child, I never really had anything to compare him to. I'm not around any other children all day long, ever. So....this is the first time I really stopped and took notice, with Alexa now 4 1/2.

When Asher and I went to Disneyland, a couple of months ago, Asher walked very slow. Asher rode in a stroller most of the time. Asher would be walking on tiptoes by the end of the day and complaining his legs and feet hurt. We couldn't see much of an amusement park over several hours, and he would need a nap mid-day at the hotel.

Asher is still weak, but getting stronger. Asher does have leg and foot problems. Asher does have very low endurance. Asher does still stumble; he is clumsy. He is not physical like any other 5 year old. His sister, 14 months younger than him, is physically stronger. Will he be stronger than her some day? May be.

1 year 5 1/2 months post-transplant, 8/29/08 MRI was CLEAR!