Today has been a very busy day at Children’s once again. Our day started at 9:00 with the ITP hemo specialist. Corbyn’s platelet level is currently sitting at 5000 per unit. He has a long way to go to meet the minimum 100,000 platelets per unit. Right now, his numbers are going up and down and he is continuing to bruise very easy.

Jade is doing very well and is about 45% for height and 10% for weight. Her dancing has helped her to gain weight through building muscles. She did very well and does not need to see her doctor for 6 months. We then talked with the dr again about Corbyn and his issues with school. Both doctors we saw today for Corbyn and Jade feel that he is taking to long to process and they feel that he needs a complete learning evaluation. They want to see if they pinpoint just where his processing issues are coming from and the best way to help him.

The doctor feels that the reason Corbyn is spacing out is he is being bombarded with to many details and to much information for him to continue absorbing all the information throughout the day. She really feels that his staring episodes are due to him not understanding what is being said and his refusal is not exactly refusal but information overload.

We will be getting a complete learning evaluation, possible OT evaluation, and if the evals do not show exactly what is going on then we will add a neuropsychologist to the team to work with him.

Crazy Busy Week

This week following Thanksgiving has been extremely busy. As the PTA President I am in charge of the Holiday Shop at the elementary school. This project has been a major undertaking. The time to organize, inventory, set up, and maintain the shop has taken much more time than expected. So far the kids love the opportunity though so the extra work is worth it.

Not to mention we are still dealing with Corbyn's dangerously low platelet count, other appointments at Children's, pre-audition meetings with the Denver School of Arts for Celidah, college and dance classes. All in all I am discovering that I simply cannot continue the current schedule so the kids are going to have to drop some dance classes.

Right now I am trying to figure out which days to drop being at the dance school and trying to decide which classes are going to work with a set schedule and not impact any classes. However, I am not seeing an alternative to mess one of the two up.I am thinking I may drop them each down to two classes, except for Zach and Chantelle and leave them in one only. The new dance schedule will begin in Jan as we are already into Dec and the kids have auditions for lead roles for the upcoming show.

One unforunate factor is the owner of the dance school does not seem to understand that when one of my children misses school due to illness they also must miss dance. This is for a couple reasons, one I do not want my kids getting others sick, and if they cannot complete school then they need to go to bed early not work their bodies really hard. Also when they are sick they are more likely to get sicker due to a lower immune system.

Happy Birthday Jade

Thanksgiving is over and it is now time to start decorating for Christmas. The kids are very excited to be getting ready to start some of our family traditions. The first one which will start tomorrow is pulling all the decorations out of the garage and starting to decorate. The biggest favorite at the first of December is watching the Polar Express while setting the tree up. When we watch the Polar Express we always eat hot biscuits and have hot chocolate for dinner. This will be perfect with after 3 days of snow.

Tomorrow is also Jade’s 10th birthday. What a special day for her as she too has come a long way. I find it hard to believe that 7 years ago she was diagnosed with autism and we were told her outlook in the social and functioning end was a dreary one. However, here we are 7 years later and she is now in the 3rd grade in a fully regular education class and no IEP supports.

We are so proud of how far she has come and how well she is doing in everything.

Happy Birthday Jade!

Idiopathic Thrombocytopenic Purpura (ITP)

Well this week has been quite a week to get to this point. How do medical moms hold everything together when all it feels like is one blow after another? For me it just seems that as soon as something looks like it will be resolving another mountain is placed before me to climb. This time the mountain is called Idiopathic Thrombocytopenic Purpura (ITP).

It seems that Corbyn does not have platelets maintaining in his body right now and for unknown reasons. His platelet count is 1000, the normal low according to sites on line is 150,000, and the normal high 400,000-500,000 (depends on the site). With a platelet count of only 1000 it is no wonder he has the horrid bruises he does have.

Yesterday I circled all his bruises and counted 42 circles. Today when we saw the dr there were many more. She told me to expect even more bruises with his platelet levels. I tried NOT to freak out when the urinalysis came back with a moderate amount of blood. But I am glad, ok not just glad but relived, that the leukemia tests came back normal so that was ruled out!!!

We have been severely limited on what he can do. Not to mention Corbyn was suspended from school today for carrying a pocketknife. It turns out the pocketknife is actually an old nail clipper set. Yet, still he had a “dangerous weapon” on school grounds so therefore had to be suspended. This has already started out to be one heck of a week, one I wish I could just curl up in ball and forget about. At least we got to the bottom of the bullying. That was a big misunderstanding and he now realizes that he has not been bullied but just playing with other kids.

I think the best thing to wrap up this week with is a poem that someone posted in my college class. The Author is Unknown.

Don't You Quit

When things go wrong as they sometimes will,

When the road you're trudging seems all up hill.

When funds are low and the debts are high.

And you want to smile, but you have to sigh.

When care is pressing you down a bit.

Rest, if you must, but don't you quit.

Life is queer with its twists and turns.

As everyone of us sometimes learns.

And many a failure turns about

When he might have won had he stuck it out.

Don't give up though the pace seems slow -

You may succeed with another blow.

Success is failure turned inside out -

The silver tint of the clouds of doubt.

And you never can tell how close you are.

It may be near when it seems so far:

So stick to the fight when you're hardest hit

It's when things seem worst that you must not quit.

Found the Real “Bully”….

After having Corbyn take a bath, I circled every single bruise on his body and we discussed why I was circling his bruises. Holy cow the child has 42 circles on his body!!! During the circling session we talked about the fact that I would be talking with his principal, his primary teacher, (he has a team of three) the school nurse, and his peds dr. Confused he asked me why so I let him know that we need to find out why he is getting so many bruises and why they are not leaving.

I then called Jairon in showed him Jairon’s forehead when just last week he had a huge goose egg due to running right into the wall. Yes, the darn kid ran and did not stop till the wall stopped him knocking him on his butt. I asked Corbyn where the bruise was (gone of course). Then had him show me his leg where he hit the monkey bars and asked what the difference is. We talked about the fact that the dr needs to help us find out why he has so many bruises that are not leaving.

We also talked about bullying and his version. Turns out he is getting “bullied” when playing soccer. The conversation we had follows.

Me pushing him: I do not like you
Me pushing him: get away from me
Is this child doing this to you?
Corbyn “no”
Has he pushed you down on the playground when playing “no”
Has he pushed you out of line? “no”
Has he pushed you off the playground equipment? “no”
Has he pushed you since he got suspended (he was suspended for pushing another child a while back) “no”
Has he tripped you when you are running? “yes, when we are trying to kick the soccer ball” (ah ha moment)
“sometimes we get in a big crowd everyone trying to kick the ball and he kicks me”
“I like my shoes because they help me move really fast from the back of the crowd to the front where the ball is, and we all kick and get kicked”

At this point I started to laugh and told him if anyone is getting bullied it is the soccer ball with everyone trying to make a goal.

We have a misunderstanding about what bullying is and is not. This is an issue I do need to bring to the principal so this can be addressed. If he is confused then I know others are too.

Totally Confused now...

Wow what a morning I have had. I have had many replies to the emails I sent out with some very good responses and now I am really confused.
Last night when I took the pictures of my sons bruises he had one on his forehead that was barely visible, yet today it is bigger, darker and shows up much better on the camera. He had no clue what happened and our 7 yr old said "remember you bumped your head on the door?"

After describing this situation on one of my special needs boards some of the advice I have received is to make sure we are seen by the dr and ASAP tomorrow. After having watched the one bruise go from barely there to dark and bigger I am really wondering if I was right to get so worked about the bullying. Is this really bullying, just normal 8 yr old boys playing, just one who normal rough housing suddenly is getting bad bruises.

I still am working on not kicking myself for not seeing the bruises before now. My husband said he has been watching the one from the monkey bar and is concerned by it not healing yet and I guess it is over a week old, so far it shows no sign of the swelling going down or healing according to my husband.

Why does parenting have to be so hard sometimes?

What the ????

Hey guys I need advice on the best approach for a serious issue we just discovered. The other day when our 8 yr old had dance I noticed he had many dark spots on his legs and kinda brushed it off as him being dirty from playing outside and not having had a bath. Well today at dance camp I realized he had bruises. Not only did he have bruises, but he had more bruises then he had a few days ago. To make sure they were what I thought I called him off the dance floor and was horrified and shocked that his legs are COVERED in huge and small bruises. The front, back, sides, everywhere. When I mentioned this to the director she mentioned something about being bullied at school. At first I defended the school as our principal is an anal micro-managing gotta know everything kind of person and figured that if it really were happening like she said I hopefully would know something about this.

After his class I pulled him into the office had him remove his shirt and he not only has bruises on his legs but back, hip, arms, and one on his face. HOW could I not notice??? It does help me to know that the PTA treasure has not noticed him being covered in bruises either and she has been at my house or seen the children everyday for the past couple weeks. But still regardless of how crazy busy I have been as his mother I should have known. Also it should not matter that this child has a difficult time expressing his thoughts, one would think if a child is getting bruises at school one would investigate.

Right now I am really torn between anger between the school and myself for not seeing any signs before now. I have emailed the principal requesting a meeting with her concerning this matter on Monday and will not accept her delaying meeting with me as this is NOT a PTA but a parent/student/safety matter. Is there anything else I need to do. The pictures I have taken show just a few of the bruises. He has over a dozen bruises on his body and has a very difficult time expressing himself especially when frustrated.

I know I need to come across as assertive, but not obnoxious as I am the PTA president. But most important I am the parent of a child very close to being placed on an IEP. What else do I need to do, not do, make sure I do? Does that make sense? Right now I am just so ticked off that this has happened to my son.

Most of the bruises are shown in these pictures.


This picture the swollen bruise can be seen (apparently that one is from a monkey bar?) but there are many other small bruises inclucing around the ankles.

New button

Well we changed Chantelle's button and she is starting to feel better. She was starting to get a site infection for sure. I am going to call the Dr. in the morning to see if they feel she is fine to wait until Wednesday when she has her appointment with the g-tube team or if they want to see her in clinic before hand.

Her site is still tender, but not so bad that if touched she is left screaming.

After we changed her button I made her a little book about getting her button changed so hopefully she will not freak out as bad every time we have to change her button. Also I HOPE this button lasts more than two weeks...

Snow, Exploding Cups, and MIC-key Buttons

The snow as of this afternoon.

This morning started out with excitement as the children woke up realizing it was snowing outside. The snowflakes were huge and coming down hard and fast and the wind was blowing. I returned home this morning after taking Dad to work. Celidah was just leaving for school and the rest were sitting on the couch watching TV. Normally they stay asleep until they are awakened at 8:00, yet it seems Celidah decided everyone needed to be awake by 6:45.

For breakfast, I decided to make biscuits and scrambled eggs so they would leave the house having eaten something warm. Jairon was not thrilled at first because he wanted his cold cereal however; once he realized I used a pumpkin cookie cutter for the biscuits he was so excited. Getting the children ready and bundled up required extra time this morning, as we had to dig out the coats and winter boots. We have yet to get winter hats and gloves for this year. Looks like we have to get them this weekend…


The snow was beautiful to wake up to but OH so cold! I am not thrilled with the cold that the cold brings. We were curious how our cat would react. It seems that Mistoffelees thinks the flakes are fun to play with yet he does not like the cold on his feet. He is so funny.

Then this afternoon I heard this loud pop and the door on the microwave was swinging back and forth. After investigation, I discovered that Zach had placed cup with double walls (meant to be frozen NOT in the microwave) was sitting there with a huge hold sitting out the side and was still rolling. I am sure how long the cup was in the microwave, but I do know that cup will never be used again.








In between the discovery of the snow and the cup I had made several calls to Children’s concerning Chantelle and her button. It seems with this button since the change she has felt extreme pain. She will wake up screaming, screams when on her stomach, or screams if the button is bumped. The nurse in the feeding tube clinic wants us to change her button from the 1.2 to the 1.5 length. She will then have an appointment with the g-tube staff next week. If this change does not relive her pain, we will have to take her to the ER. We are now waiting for her new button to arrive from the medical supply agency.

Introduction to the family of monkies

I have decided to start a family blog for several reasons. Nana has one about her sheep and their sheep ranch, a bunch of my friends all have blogs, and the CarePage has limited pictures in addition to a character limit per post. There are days when I am long winded and have more than a few things to say.

Currently Celidah is in middle school and in the National International Baccalaureate (IB) Program. There is one middle school in our local area that offers this program and a couple high schools. However, we are looking at the Denver School of Performing Arts for her next year. The audition process for next year is starting next month. We have to attend a pre-audition meeting, return for the audition, and return one more time for the placement testing. If accepted she will enter this school under the dance major track. DSPA is a magnet school for 6th-12th grade teaching not only academics but performing arts skills. There are several tracks that Celidah could probably try for, but dancing is her life right now.

Jade is in the 3rd grade, completely mainstreamed and doing very well. She really likes her teacher. She really loves dance especially ballet. This week she gets to try the advanced ballet level class to see if or how close to joining that class she is. She is already in pre-point and getting ready to eventually perform on pointe shoes. Her dream.

Corbyn in the 2nd grade and struggling this year. He does not seem to grasping the various concepts very quickly. Math and writing are his worse subjects and we are working to find out what needs to be done to make sure he is progressing. Homework? Not a term he likes or wants to hear. He will outright refuse to do any homework if allowed. Then when we do get any completed it is a LONG drawn out painful process.

Jairon is in the 1st grade and doing very well with the exception of writing. He is very low on the proficiency charts for his ability. He is a very smart child who is reading above his grade level, comprehends and love math, totally loves art and music. He is struggling only with writing at this point.

Zachariah is in preschool and attends Monday-Thursday in the afternoon. He is a total bundle of opinionated energy. This child is never able to sit still and has to be doing some thing at all times. Preferably, running and jumping. He recently had his feeding tube removed and is thrilled to be a big boy with two belly buttons. His has his "tummy button and the doctor button." As he calls them. The tummy button is his belly button and the doctor button is the scar from where his feeding tube was for 4 years.

Chantelle is participating in a preschool coop this year. She was to young for preschool so I was blessed to be able to join 5 other families wanting preschool for their children. There are six 3 year old children in this group. She has her "school" Mondays and Wednesdays and LOVES being a big enough girl to attend school. She is recent graduate from oxygen and constant monitoring. However, she will not be getting rid of her feeding tube any time soon.

Mistoffeleese is our cat who is now about 8 months old and already the size of a full grown cat. He is almost 9 pounds with huge feet. Mistoffeleese is all black and like the magical cat on "Cats" he too seems to have his magical abilities. He is able to hide from everyone in the house making the kids think he is gone and lost then suddenly appearing as if he had always been there.

He is SUCH a gentle cat and will let the kids do anything with him. They love to carry him around the house like a baby and he just melts in their arms purring the whole time. He never claws or scratches the kids on purpose even when made at them. He has almost dog like mannerisms and leaves us wondering how he is a cat with his personality. I have never seen a cat so loving or gentle in my life.

Frank (daddy as the kids call him) is getting ready to take tap again now that his ankle is getting better. He is a soldier in the Army and we are looking at possible deployment overseas. Where we are not sure yet.

I am here to write and try to keep up with everything that happens. I may not post everyday as I am not only a mother but a full time student, the administrative manager for the kids dance school, and the local Elementary School PTA President. Yes, I keep very busy.

Oh and yes I know I have misspelled monkeys. My screen name for everything online is either SixLittleMonkies or MyLittleMonkies. The monkies was misspelled on purpose to set my screen names apart from others with monkey/s in the names.