Tuesday, January 28, 2014

Music!

We have a few more instruments in the house. at Christmas Celidah picked up her violin and started to play again. Poor Zach really wanted to play with everyone else, but could not because we did not have enough violins. So we decided to buy two more. Yes, we now have 3 in the house.

Zach's arrived first and poor Ellie was devastated because her big sister and brother both had but she did not. That was until hers arrived. So now we have both Zach and Ellie learning to play.

Jade has been working so hard with her flute and has improved so much. I love the level of determination she has.

Corbyn is progressing along with the bassoon, but would progress faster if he would practice more.

Jairon is really starting to take off now with the clarinet and is totally loving how the clarinet is sounding.

Zach is so excited to be moving onto the bow now with is violin, and Ellie is so excited to be learning with the bow here soon as well. Although it is very clear that she has been paying attention because almost immediatly she picked up her violin, named each string, plucked and said, "I am playing open A."

Things Around the house!

I was messing around with our printer trying to figure something out and came across a set of settings I have never seen. Exploring these settings further I discovered that I could make much needed changes. I was able to change the paper from photo to standard, and then printing from best/picture, to standard printing. I was also able to get the Wi-Fi setting working again. I was so excited.

We moved our front room around. Not only does this open up the front room, but allows for more room when the x-box it played and more room for company.

Lots of missed school due to a small amount of snow and cold temps. We are now at the point of having to make up days at the end of the school year or take days out of spring break... The kids are NOT happy...

The joys of kids in the kitchen... Not paying attention, Jairon grabbed salsa and spaghetti sauce to mix with the noodles. For some reason that was NOT a hit...

Oh goodness, our kitten is so crazy.. She LOVES to tear through the house fast as she can jumping and leaping as high and far as she can on and off the couches. She is also figuring out which of Ellie's stuffed animals she can carrying around the house. The stuffed Nala is NOT one of those toys. giggles.... Nala is bigger than Amy and only topples her to the floor...


Medical

Several Medical updates that will be lumped together as well... Yeah we have had a crazy start to our year...

You know your child has been to the doctor a few times when the screening nurse is at the computer opening her chart to check your child in. However, instead of waiting she carefully stands just right to measure herself, takes her backpack off lays it on the floor, zero's out the scale, sits and waits for her weight. Finally, she begins preparing the blood pressure cuff for the nurse.

As soon as she turned around and saw what Ellie did, she smiled and giggled at her and simply told her what a good job she did.

So far me this has not been a good start migraine and vertigo wise. More days than I would like to admit I have awakened with severe vertigo, nausea, and well simply put, walking makes me feel like I am on a roller coaster.

Ava my dog is coming along great with her training though and we have found a combination that is working very well for me. I have a handle that attaches to her harness, we also use a gentle lead haltie, and a regular leash. The regular leash is separated in about 1/3rds which allows me to hold the shorter end of the leash and the vest handle together. Then the other portion of the leash I simply let drape in front and can correct as needed with gentle nudges.

I also started the new year with a bad case of bronchitis. This time was bad enough I have missed about a month of church, had to go on antibiotics and prednisone. Oh so glad to be off the horrid tasting prednisone.

Jan 16th
We had one of the best pulmonary appts for Ellie to date. We talked about her PFT (pulmonary function test), the lack of steroids and antibiotics since school started, and drastic decrease in hospitalizations. Dr C asked what we have done for this drastic turn around with Ellie, and when he learned we are homeschooling her said to keep it up because health wise this is obviously what she needs at this time. This is the best her lungs have been.

Her PFT showed that her lungs have moved in the (lower levels) BUT normal functioning levels. This is a level we thought we would never see with her. YAY!!!! WITHIN NORMAL LIMITS!!!!

The only change he recommended was to have her albuterol, accupella, saline, accupella, pulmacort. the reason for the albuterol first is because that will open her lungs more allowing for more gunk to move around. The saline will also allow for more gunk to be moved out. Then we do not use the accapella after the pulmacort because that needs to stay in her lungs.

Jan 24
Still sick with bronchitis... PLEASE let my lungs heat and feel better UGH...

Jan 27
Finally, not feeling run over by a steam engine...

Well we have been working on food trials with Ellie and so far she seems to be doing ok with rice. So we have started to let her have a rice/quinoa noodle and the gluten free rice chex. She is so excited to have these 2 new foods a few times a week. 

While she does complain of tummy aches and needs the ferral bags more often when eating she simply loves being able to eat. So far her foods now include, apple, pear, rice, chicken, and quinoa.

Oh and since we have been able to increase her pump flow rates both day and night she has gained a bit of weight again. Hopefully we can keep her gaining and growing again!


Celidah Migraine Rant

Okay... I can do this... It's just a little headache nothing much... I think to myself around 3:30. I'll just sleep it off. I curl up on the couch under a blanket facing away from the TV. But... Harry potter is soooo tempting to watch, so trying to fall asleep falls flat. I end up watching the rest of the movie and the next one. Yeah, the headache's nothing... I can handle this.

Ugh... My eyes... not a headache anymore... but it's still a simple migraine. It feels like there's a vacuum behind my eyes, trying to suck them in, but my eyes are too big. I put my palms over my eyes, welcoming the dark... my only true friend I've had since childhood... the comfort only the darkest of rooms can offer. It's not enough. I push on my eyes, trying to make the pain stop. It helps... but only slightly. I need to finish what I'm doing then I'll go to bed. I gotta get to September... it's not that far away, I'm on August 18. But it's too quiet... too too quiet... The X-Files will clear that up.
I watch two episodes with my computer as dim as I cam make it before I'm done collecting Facebook posts through August to the beginning of September.
But I'm not tired.
I'm not ready to go to bed and it's only 11. I persist on my computer to finish the 2nd X-Files episode. When it's over, I switch to the kinder, smaller, phone screen and continue talking to a friend via text.
But it's not just in my eyes anymore... It's spread... My head... my head feels like a cinderblock is trying to replace my brains but crushing down and squeezing them out my eyes and ears. It hurts... It hurts...

I lay down and close my eyes. My head erupts in pain! Agony! I can't lay down... it feels like a hammer is being thrust against my head. I feel my stomach flip and do roller coasters. I realize I never parted my hair like I normally do, and I do that.

*thankful sigh*

Relief... sweet... blissful relief to what I had just gone through... but not enough. My head is still pounding, throbbing, squishing around. Okay. I'm not waiting any longer. I want it gone. I want it all gone.

I tell dad. He nods his head thinking it over. My voice is ignored...

I tell mom. She nods and tells me to go take excedrin, naproxin, and one of Chantelles zofrans.

I do that and go back to bed. The time is 11:14. I still can't lay down... It hurts too much. I glance at the phone as it vibrates. I should say goodnight.

> (So I just read up a bit, with Heathers weight she will probably notice her stomach protruding a little. Not much but enough to make her excited)
> (Did I lose you?)

> (No)
> (Okay)
> (Yeah)

> (Are you tired?)

> (My hair may not last much longer, not it parting it the wrong way will give me a migraine hard enough I want to scream, pound my head against a wall then drop kick it across the room)
> (I want to shave it all off right now)
> (I know where the clippers are too)
> (It hurts  It hurts so bad it's making me nauseous)

> (Ah.... Well you would still be able to donate a good amount of it)

> (I HATE LONG HAIR!!! I love what you can do with it, but I HATE LONG HAIR!!!)

> (Cause it gives you migranes

> (I may not be at school tomorrow. That's how sick I feel.)

> (Do you want to stop talking so you can rest?)

> (I'm not going to get much sleep tonight)
> Yes. I'm done. Done done done. It hurts so bad... light... sound... BAM BAM BAM!!!

> (Okay, I'll be here for you as long as I can)
> Okay, night then *hugs* hope you feels better

> Darkness is too bright, silence is too loud... it hurts...

The time is 11:24.

I feel about ready to puke... my stomach is turning, my lips feel numb...
I climb out of bed and hurry to the toilet, but nothing but excessive drool comes. I stay where I am letting out breathy sobs as my tears drip off my chin and nose into the water as I hold my long, beautiful, locks up against my head. It takes away some pressure. I whimper out a soft prayer to make the pain stop, to make the meds kick in faster. All the time, I have something to smile about. Amelia is circling around me, trying to figure out what's going on. She leaves eventually.

The zofran kicks in, I'm no longer nauseous, but my head hurts so bad... I scoot away from the toilet and hug my knees, still letting out breathy sobs. I have a need to have some output besides the crying that is making my head hurt more so I start rocking, rocking, rocking, rocking, rocking, back and forth, back and forth, back and forth, back and forth.

"Make the monster go away, make the monster go away, make the monster go away, make the monster go away, make the monster go away, make the monster go away, make the monster go away, make the monster go away," I whimper over and over mixed in with my sobs. My breathing falls into rhythm as I chant it and my sobs slowly calm down. I'm done. The hair needs to come off. NOW.

I go to dad and ask him to cut my hair off. He tells me to take an excedrin. I tell him I already did, about 15 minutes ago. The time is 11:32.
He asks if it can wait, I answer "Yes" and leave him to finish his fight.

I curl up on the couch, holding my hair up against my head. I haven't taken my hands off my head and let it down since I went to the bathroom. I sit there waiting, sobbing my breathy sobs, too afraid that putting my voice in them would make my head resonate and hurt more. "Stop the hurt... stop the hurt... stop the hurt..." I start. Wrong rhythm. Wrong pattern. It makes my breathing feel funning and head hurt more. "Make the monster go away, make the monster go away, make the monster go away," I continue chanting. I don't know why it helps, but it does, the pain subsides slightly.

"Are you okay?" Jade asks as she wanders out.

"Go away!" I cry out. I don't want to talk. It's too loud as is. Make it stop...

Distantly, I hear, "What's wrong with Celidah?" Then I tune everything, EVERYTHING out... silence... my other dear childhood friend.

Dad comes out. "Are you sure you want to do this?" He asks looking worried.

I turn my red, puffy, tear stained face to him. "Yes," I whimper. "It hurts soo bad! I know my head will be cold, I know there's no going back once this happens, I just want it gone!" I whimper and turn back into the couch, rocking again.

I hear the parents conversing.
"I totally know where she's coming from. It hurts."
Dad responds, but again I tune everything out with my breathy sobs and chanting.

"Celidah, come here," Mom calls and I obey quickly. I come into the room and the change in light nearly knocks my feet out from under me. The only way to keep my balance is to keep walking, so I go over and sit on the floor between Moms’ legs.
She starts tugging and pulling at my hair gently, trying to use her fingers a brush. I love my mom... so considerate...
"Would you like a brush?" Dad asks.
"No! No, a brush would be a bad idea," Mom speaks up.
"It will make the cut neater," Dad points out.

The next few minutes are spent putting my hair up in a ponytail. The next 30 minutes are spent cutting my hair.
The time is now 12:36

The meds have kicked in.
My tears have stopped.
The hair is gone.

After a short shower, I go to bed. It is now 12:56

The last time I see before I fall asleep is 1:24.

She left out the part of the conversation we had while brushing her hair as gently as I could, about the sound and vibration of the clippers along with her migraine. Knowing personally what the simple act of moving her hear around or vibrations would feel like, I warned her about this torture for her. Yes, she needed the excess weight of her beautiful long hair removed, however, without sound, vibration, and as little movement as possible.

Poor Celidah felt bad enough about begging for a midnight hair clipping as it was, yet, she needed our help. Helping her understand that time is not a reason to not ask for help. The kids all important, as are their needs, day or night. They just need to come and ask.

To the Moon and Back

As parents we reach out to others for help, support, comfort, and sometimes just to know we can follow another's path. Margi Harrell, poem "Footprints in the Sand" starts off as if in a dreamlike state. This poem is written to understand the guide on the beach is the Lord. For now I am going to look at other possibilities. Who would I need along my physical side during turmoil? Would it be my mother, mother in law, brother, brother in law, father, father in law, best friend, or doctors? Looking at this "physical' list there are many possibilities to walk along the beach with.

Children are so precious to parents and many forget how blessed they are to read to, talk to, see and hold their children on a daily basis. Please, give your kids an extra hug tonight knowing they will wake up and greet you with the same smiling faces, same hyper actions, same big hugs letting you know they love you to the moon and back.

A military family I know of had their world turned inside and out and been on the emotional roller coaster while watching their 11 month daughter lose her ability to fight and earn her angel wings. In the past two months this tiny child has endured 3 major surgeries, one major heart attack with CPR being performed for over 30 minutes, a minor heart attack with another short CPR burst. Her tiny tired body is running out of strength and her parents will be able to hold her for the first time since her first surgery in early December. Please keep this family in your prayers and thoughts as this family is forced to return to life as it was before their daughter and before her first open heart surgery. 

For most families everything is and will go wonderfully and smooth. However, for the "parent" or dreamer who is struggling and looking back, they may noticing two sets of footprints, with an occasional one set here and there. Stopping to pause and ponder this curiosity, the parent asks where the support went when it was most needed. The walking partner quietly listened as this exhausted parent talked about the times with the greatest struggles, feeling defeated, and thought everyone around had forgotten. The walking partner quietly said, "The times when you have only seen one set of footprints in the sand, is when I carried you." 

Just who is walking partner? This partner could be your best friend, a parent, someone you are just meeting who has already walked the you are about to begin, or even Christ.

Personally, we have dealt with some major stuff with a few of our children, yet even their issues seem minor compared to what other families deal with. I think that is one of the reasons I participate in special/medical needs groups I do. These groups help keep me grounded and focused. for example the day Ellie went in to get her button changed under anesthesia, another child was going to the OR for a 16-20 hour open heart surgery. A different child was also entering a different OR for cleft repair. Three very loved and important children in three different states, yet all hoping for success.

I do not understand why our family was blessed with the medical/special needs children we have. I also hope that someday I can become a walking partner and carry them while they need the one set of foot prints for that time period.






























Effects of a Good Book!

Oh how I LOVE a good book in the hands of a child. This book left Zach rolling in fits of giggles and laughter while fighting to keep a hold of the book. The all of sudden his giggles and laughter stopped dead and the sudden groan of, "OH NO! Not another to be continued! Mom you have to, just have to get the next book tonight!"

Yes he was very serious, and has asked again if I got the next book. He does not know it yet, but it will be here in the day or two.

Oh and what is this book that has my children literally rolling in fits of giggles and laughter, then groans as it ends? One Dead Spy...
Musings from the kids...

Kids can say the craziest things whether they are simply talking, playing, are trying to explain something. With six children in the house we often hear tidbits here and there.

One morning while doing her school work, Ellie had just learned that 2 of her cousins and her uncle have roles in their local production of Les Mis. Suddenly she looked in the middle of her favorite song and said, "When I am older I can be Les Mis too, I just know I will be Cosette, because I am little like her and I just know all her songs so very well. My most favorite song is Castle on a Cloud and I can sing it the best.

Ellie, "It is so sad that little boy gets killed. He was just trying to help and was just a talkative boy like I am. Why did he have to be killed? He just wanted to help like I like helping."

Ellie, "I wonder if in the war scene, if the guns were special and cool nurf guns made to look real. Because, you know mom, in the play and movie they really did not hurt anyone, because if they did, it would kill to many people if they all dies. Also if they all dies every night nobody would ever want to be in the movie or play, so they had to be nurf guns so nobody would get hurt."

Seems we have an Aristocat...Every evening when the kids go to bed our cat likes to jump on the piano keys making as much noise as she can. When the cover is closed she will jump on the piano anyway and meow for help. This especially bothers Jade.

The joys of teaching art to a child with OCD. They think everything has to be just perfect. Ellie, "but mom the circle HAS to be perfect, if not the face will look all weird. It has to be perfect so everyone can tell it is Curious George I drew."

Zach found a way to keep playing with our Skylanders that we no longer play with, with our Wii consol since the Wii does not play the games right any longer. He had a whole battle set up in the living room with the characters we have. Suddenly, out of the blue, I heard him say as he picked up one Skylander, as if it were talking to another, saying, "but how will a peanut better cup make it fart?"

I too wonder, just how will that happen and what "super powers" did his imaginative mind have in store with that scenario....

Zach, talking with the Sister Missionaries as they were over at our house, "yep, I am a good helper. But sometimes I am not a good helper. I am just not." Yes, that comment did earn some giggles...

Scout Camp Icicle 2014, I had just gotten off the phone With one of the scout leaders to confirm that both Corbyn and Jairon would be attending the winter camp out. Reminding them they needed to pack the following day as soon as got home from school and before heading to bed, Jairon asked me why he had to be packed by Thursday for the Friday camp out. I simply reminded him that he would have little time to pack for the camp out once he got home from school.

Insisting he had plenty of time, I reminded both boys again what needed to be done, why, and when. Well this time Jairon informed me that school was delayed by 2 hours so they had plenty of time so they could use those extra hours after school to pack. I asked him again what time he was catching the bus to school and coming home. Of course he let me know, "normally we catch the but at 7:39, so we catch the bus at 9:39 and get home at 3:30. That gives us to hours before we are picked up at 4:30."

Clearly he was not comprehending this change yet. So again, I asked the same question and got the same answer, this time from both Corbyn and Jairon. This time I asked I asked when they were going to eat, take care of their backpacks, put their instruments away, change for the camp, pack, load their stuff in the vehicle once it arrived, and still have time to pack in ONE hour...

Finally, my questions clicked and they realized they had to pack Thursday night.


I love homeschooling my youngest and her total desire to learn. What makes this even more fun is seeing her confidence develop and grow throughout this process.

Today I had a dermatology appt, and being the curious little munchkin that she is, Ellie had some questions for the doctor today. We have just started a unit on the skeleton and muscular system so she had some questions that needed further answering.

First off, "What is the difference between the scalp and skull?" With this question she was all excited to fully make the connection that the scalp is the bit of skin covering her skull, and the skull is the bone that protects the brain.

"What does the brain look like?" I let her know this question would have to explored at a later time. Happy with answer, she suddenly touched her hair, felt her scalp, then asked, "Wait, does hair grow like grass?" The dermatologist let her know that in a way it does, but does not. He talked with her about roots and follicles to help hair grow.

When she was asked what she wanted to be when she grew up, she answered in such a straight and serious face and tone of voice that nearly made all of us laugh. Looking into the eyes of the dermatologist she replied back, "But a scientist of course." He replied back to her with, "and one day you will make an amazing scientist." She replied back again, "Of course, because science is so awesome and there is just much amazing stuff to learn."
Homeschooling Moments with Ellie

Dec 17th,
We have started a unit study on planets and volcanoes. Ellie has been waiting since school started to start this unit just so she could build a volcano then watch it erupt. Throughout this process she has not only created her paper mache' volcano, but she drawn the inside in her sketch book and labeled each part. Learned about the various eruptions, helped find movies in Nexflix and Amazon Prime about volcanoes. This project lasted over a month and she loved learning all she did.

   

Jan 9th
Ellie asked what the difference between homophones and rhyming words were and how they can sound alike,  yet be different words. Since she loves words and how they work together I did a quick Google search. She was nearly bouncing our of her skin to learn that rhyming words have one part that sounds and sometimes look the same, while homophones can be totally different words but sound the same.

We spent the morning matching words that rhymed or were homophones.

Jan 10th
During a lesson on planets, Ellie was learning about Mercury and Mercury's Rings. In her excitement about learning about this plant and its rings Ellie could not wait to tell Daddy about what she learned. In her excitement she exclaimed, "I do not want to be be a doctor now, I want to be a scientist, because there is so much more to learn about planets and space than doctors ever have to learn about the body!"

Jan 23rd
The Volcano Finally Erupts!
Chantelle is totally beside her self with giggling, jumping, bouncing, squealing excitement. She learned earlier in the day that today would be the day for her eruption and there would be no way her volcano would wait any longer. Running to the kitchen she helped Corbyn grab the baking soda, white vinegar, red food coloring, 60 ML syringe, extra feeding tube extension, medicine spoon, and medicine cup. Yes, only in our house a volcanic eruption requires a syringe, medicine spoon, medicine cup, and an extension.

With the "lava" created at the dinner table the first time and dropped on the floor she was worried about the mess. Never fear, a clean damp wash cloth cleaned the lava quickly. This time the needed items were moved over to her volcano. Soon, she was back on track and ready to try again. Not only on track but bursting with intense energy. Each new eruption brought more energy and excitement. Yes, mission accomplished.