Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, on Tuesday, January 6. 2009 at
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.
Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, on Thursday, December 18. 2008 at
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.
Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, on Sunday, December 14. 2008 at
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."
Posted by Steph in
1 Year Post-Treatment, Sleep Issues, on Saturday, December 13. 2008 at
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.
Just an update - 9/19/10 - Asher is 7 1/2 now - he is still having these, I'd say at least 5 out of 7 nights of the week, but seems to be only during the first hour of going to bed (not other times in the night). He is now walking, downstairs, at a very fast pace when he awakes, and I generally wake him up and take himby the hand back upstairs. Or sometimes I just take his hand and put him back to bed, I'm not sure if he is waking up. Also, one night I tried to wake him before a night terror began and it looked like I was too late and he freaked out, looked very scared, and just couldn't get rested back in bed. He kept getting up and I had to keep putting him back to bed. He is going to bed in his own bed now and staying in his own bed all night. I do think, he could use a nap during the day, but unless I take him for a drive, he wouldn't sleep. I'm not sure what to do....I guess just keep taking him back to bed.... I walked in my sleep, and did weird things when I did, when I was a child, so I suppose he is getting this from me....sigh.
Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, Family, Infection, Quotes / Inspiration, Scans, Thank Yous, on Monday, December 1. 2008 at
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
Posted by Steph in
1 Year Post-Treatment, on Thursday, November 20. 2008 at
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.
Posted by Steph in
1 Year Post-Treatment, on Sunday, October 12. 2008 at
Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, on Monday, September 29. 2008 at
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....
Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, on Friday, September 26. 2008 at
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.
Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, Feelings, on Thursday, September 25. 2008 at
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.
Posted by Steph in
1 Year Post-Treatment, on Monday, September 22. 2008 at
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.
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.
Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, on Saturday, September 6. 2008 at
update Saturday 9/6: 101.8 fever still, at 12pm Saturday. Slept from 8:30pm last night to 9:30am this morning. Not eating more than 2 bites a meal. Drinking though. Tylenol has been keeping the fever away, ever four hours, and he ate a huge dinner, but he went upstairs, shivering, to the den and fell asleep on the couch within minutes and by 6:30pm his fever reached a sudden 105.1, freaking me out, but Motrin took it down to 101.5 by 7pm....still no obvious reason for the fever, so watching him closely.... by 8pm his fever was gone (temp around 99.6) and he wanted some chicken noodle soup, and now 9pm and he doesn't sound tired....yay motrin....now hoping Scott will watch him around 11pm in case that fever returns, because I'm going to bed, only got about 3 hours of sleep last night with the ding-dong ditchers (who TP'd our front yard and then rang our door bell) at midnight and me not being able to fall asleep till almost 2am, and then Asher up at 5:30am with a fever and Andrew waking up a few minutes later and then heading out to mow the front yard and get the toilet paper outta my trees and bushes....
update Sunday 9/7: 101.5 fever at 5:30am and at 12pm....woke up from a nap at 2:30pm all sweaty, so maybe the fever is finally gone for good....well, no, wrong, 7:30pm temp at 101.5 and climbing, gave more Motrin....
update Monday 9/8: I fully intended to keep Asher home from school today, because of his fever through the evening yesterday, but I wasn't expecting him to wake up crying with a fever so high the forehead scanner thermometer (what is that called?) had "HI" as the readout, instead of a number! For some reason when Asher gets a fever, one side of him is 2 degrees hotter than the other. So one side read 104 and the other "HI"....you get the idea. I used an underarm read out of 104.5 to make sure I was getting the right number then. Motrin worked its magic, though, and he slept through the fever coming down to 99. I can deal with fever associated with a reason for a fever, but it is another thing for me to emotionally, rationally deal with a fever with no known cause. So, my anxiety was going through the roof this morning, and I was almost in tears about it. Before Asher's cancer diagnosis, I was a very laid back mom when it came to illnesses. I figured things would run their course; no need to rush to a doctor. Nothing bad would ever happen to my kids. Lately I have been thinking about the worst possible things a fever could mean and I've had nightmares the last two nights about very odd things.... Anyway....he is eating just a little today, and drinking okay, and he is playing and playing since 10am, once he got up, along with another dose of Motrin. He has a pediatrician appointment tomorrow at 12:30 if his fever persists.
Update Monday Night: Motrin is doing its job, with only 2 doses so far and one more before bed here, soon. After dinner, which he ate a very small amount of (again), he did three homework sheets. He is always so happy to do them. I have his supplies in a box for him, which he says his school box. He got it out and did very well on his homework with me just reading the directions to him. He had to circle ten pictures of things that started with the letter T. Each time he said what a picture was, he said, "t-t-t-t-t" for the sound if it started with T and then he circled it. His teacher is doing an awesome job of teaching him and I'm so proud of him, that he will show me what he knows and is enthusiastic. I notice very little frustration. He erases an error and tries again. He never used to be like this. Of course, I have him do home work on days he has not been in school. I have no idea how he will do once he needs to do some on a school night (those nights are a challenge). Anyway....we'll see what the morning brings as far as a fever goes. Sometimes it is hard because I think, "Oh, he had Roseola as a kid," or blah blah blah, and then I remember, oh yeah, we had to start over. He has no immunities, as of 3/13/07, his immunities were wiped clean. Like that of a 1 1/2 year old toddler now, but he's in kindergarten. Also, he can not have the measles vaccine or chicken pox vaccine until after 3/13/09, so I worry a little bit more about him being exposed to those illnesses....as well as a few others where he just isn't caught up yet. Oh....and something cute....Asher went up for bath and he immediately got the armpit thermometer and took his temp and told daddy, "This is what my number is under my armpit."
update Tuesday a.m.: Another 105 fever at 11pm (daddy didn't give the Motrin before bed, thinking he may not need it)....this morning his temp was 100.6, not too bad, but gave him Tylenol....he'll go to the doc today just to make sure nothing needs antibiotics.
update Tuesday 2pm - doc test for (1) strep (negative), (2) mono (full results not back yet), (3) pneumonia (negative)
update Tuesday night: So, still no answers to why the fever. It was 101 this morning I gave him Tylenol. It was 100 at the doctor's office at 12:30pm, but, on the way out of the room, he grabbed his tummy in pain and his fever spiked up again. The doctor got to see it (glad!) and she had the nurse give him Motrin then, so when he got home, his temp was 98.7 on the button. The doctor reminded us that he will have 2 year old illnesses "again." She said we did right, day 4 of fever, go to the doctor. That is when they can start to test to rule things out. But, if the fever isn't gone by Thursday, then we need to take him back in Friday because after day 6 of a fever, all sorts of other things could be the cause (her words). Anyway....part of me is hoping this is just roseola....which he had at 13 months....I'm going to sit and watch for that chest rash. When asked if Asher could go to school tomorrow, her answer, "Oh no! He's too sick." She is supposed to be faxing a note to the school. He's been pretty moody today....been a long day....I think he's tired.... So....we're waiting for the blood test for mono to come back. If that is negative, then we'll take him to a nearby lab and get more blood taken so a full workup can be done.
update Wednesday: Asher woke to a 100.5 fever, not too bad. He had motrin last night around 10pm and then this morning at 7am or so. It is now 3pm and I'm not giving Motrin unless his fever returns. We shall see how the night plays out.
update Wednesday night: When Scott got home, he carried Asher upstairs (Asher said he couldn't walk)....we had been playing sequence for kids....Scott set him on the bed and turned around and he was asleep the next breath. I went up there and started talking to him and Scott said, "He's already asleep." Well, I woke him up, because I remembered he didn't eat (he had refused dinner at 5pm). So, it is 7:30pm now, and he's eating some food. He went from 11am until 7:30pm without eating. Not normal for him. He still hasn't had anymore Motrin or Tylenol. His temp has been fluctuating between 99.6 and 101.3, and I'm watching it closely. We're getting to that magical point of having to call and bring him back to the doc; if he has a fever tomorrow, we have to call for an appointment for Friday morning. I have been lifting Asher's shirt all afternoon, and into the evening, hoping for a rash. With the lack of 'high' fever returning, I was hoping for a sign of rash that would be the end of roseola. Anyway....off to bed....
update Thursday: mystery fever has vanished....bye bye fever....Asher will be going to school tomorrow
update 9/15: after the fever broke, a cough started....just in the morning at first....but now all day, and a pretty rough cough....poor guy....
Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, Scans, on Wednesday, September 3. 2008 at
No MRI results. No news is good news, I am sure. I am sure, too, that unless I made a point of trying to get them to call me, like I have in the past, they won't call and I won't have the MRI results till clinic, which is 3 weeks from today. The MRI was so early because it was his day off of school and I planned ahead...crazy mom.
Asher's neck was better by Sunday, but then Scott's hurt and mine, too! Oh, and Grandma Val's too. So, it must have been some cold bug passing around....our head and neck hurts along with being extremely tired....
School is going great for Asher!! I still get my sad moments, when I miss him tremendously during the day, or I get overly worried, but now I really just love that he loves to go to school. He's learning so fast, too. When he comes home, over several hours, he will tell me random things that happened during his day at school. We read more and more and more books now before bed. It feels like so many that it puts me (almost) to sleep!! I've started the bedtime routine at 5:45pm. Isn't that insane?! Well, with 4 little ones to bathe and read to, it does take over an hour. It will be nice when the older two can shower or bathe themselves! Scott gets home around 7pm; so he only sees the kids in the morning now during the week. Asher is usually asleep by 6:30pm or 7pm at the latest now! He's getting about 11 hours of sleep at a minimum. He's also eating almost all of his lunch now, including a full sandwhich, not just a half. So, I think the fact that he wasn't eating a couple of weeks ago was just stress. I'm just smiling at how much older Asher seems to be now that he has been in school for a month. The teacher has told me on a few occasions now, "He is always so polite and well behaved. He is an absolute joy to have in class." He's missed 4 days of school already, and I'm hoping so much that he won't miss any in September. But, we will see! Yesterday he told me a boy threw up in the classroom. That flu is still spreading; hopefully Asher already had that one!
The one thing that I'm struggling with is Asher's behavior at home, especially after school. I'm not sure why he acts the way he does. Some days I just want to pull my hair out.... He is treating Alexa badly, with words and actions, and mom too..... I guess at least he is good at school....
Thanks for checking in.