Sunday, March 28, 2010

Wish for things

Atty has an appointment at Children's this Tuesday.
*
His doctor and I have discussed on the phone the possibility that Atty might have Mitochondrial disease. Something I brought up to his pediatrician almost two years ago.
*
He will possibly be tested on Tuesday.
*
It's a muscle biopsy.
*
I want all this to end.
*
But I also want more answers.
*
Some help, not just medicine, some real answers, long term solutions.
*
Some healing.
*
I hate that he has to go through all this.
*
He's only three.
*
I want to take it away...I want to suffer for him.
*
He's having drop attacks again.
*
I'm not handling this very well.
*
Actually I'm quietly falling apart.
*
I hate hearing him crashing to the ground.
*
head cracking on tile floor.
*
Cries of surprise and pain.
*
Hate watching him watch his brothers play.
*
With a blank look on his face.
*
When your child's neurologists tell you that your child is baffling...it's not good.
*
When they say they wish they had some better ideas, but to be honest there winging it at this point...it's scary.
*
We are running out of medicines to try.
*
They have mentioned brain surgery once already.
*
It bugs me that he can't eat what everyone else is eating. I know that sounds minimal next to brain surgery, but it's an every day frustration.
*
Especially when he doesn't want to eat his special food. I just want to be able to give him the food I know he would love to eat. Regular ol' bread, yogurt made from cow's milk, etc...
*
I feel frustrated when he doesn't eat the food I make him, from freaking scratch because I have to...(because he can't have wheat, gluten, any dairy or coconut)
*
I really want him to be able to enjoy his food (he does like some of it), but it's hard to make something yummy from my options for him.
*
he's losing weight and not eating very well at all. It's starting to scare me.
*
I want him to be healthy.
*
I hate that the word seizure is common place in our house now.
*
I discovered more of the cafe-au-lait spots on his body. They only mean one thing NF1. Why that too? Why did he have to inherit both things from his birth mom. Why?
*
I can't stand all the doctor's appointments and paperwork.
*
Blood work. Making a sweet tempered little boy sit still over and over again while they poke a needle in his arm. I hate needles. I can't even watch.
*
Medicine. Three different medicines. Two times a day.
*
Fussing and crying during the night. Not sleeping well at all.
*
I find myself breaking down praying and crying at random times during the day.
*
I wish we could go back to the way it was just a few sort months ago...minus the food allergies too while I'm wishing for things.

Friday, March 26, 2010

Bath time nursery rhyme

~Scruba dub-dub
Three
*Boys*
in a
Tub~
...and aren't they the cutest...

Thursday, March 25, 2010

Wonderful little creatures

I love these boys.Look at them helping their mommy. They are all wearing helmets in solidarity. Atty has to wear one right now because of the drop attacks and the helmet that I ordered for him has yet to arrive. So he has been wearing a bike helmet and his brothers wear one right along with him. They don't really fully understand how awesome their support is yet but I do and it warms my heart. They are really becoming so caring with him and much more understanding. I knew they would in time. I took them all to the store to pick up Atty's prescription for the first time since the seizures started. I had been avoiding going places with all of them mostly just because other people get a little freaked out when Atty has seizures or the drop attacks or the tonic spasms. Probably because it's unexpected and out of the ordinary. I get sort of embarrassed having people stare at us when one of those things happens. And it's stressful trying to keep tabs on the other two while dealing with Atty. The whole thing has me a little over whelmed but I knew I just needed to jump in with both feet and get over it. And you know what? It all worked out beautifully. Team work the whole way. We even went to get fruit smoothies with a gift card someone gave me and the boys were so excited to have such an awesome unexpected treat. I was really proud of them and what they are becoming. It is so neat to watch them grow and become such caring, understanding, compassionate boys. Atty did not have any seizures or anything so I have yet to deal with that in a crowded place, but I feel more confidant every time we venture out together. I'm sure I was a sight with a baby on the back in her backpack carrier and a boy in my arms and two more in tow...but when they are so well behaved I don't care about the stares because all I feel is great love for my wonderful little creatures...I mean children.

Wednesday, March 24, 2010

Swollen eyes and heavy limbs.

It's one of those times in life for me. One of those rough spots. I'm being slammed from the left and then the right and then sucker punched.

I wrote a post a while ago about all the different things that were trying to drag me down, I'm not going to link to it or anything, who really wants to read about all that... but if you did none of that has changed yet. None. Of. It. Plus last week I found out that the one and only full time daycare kid I had right now isn't going to be coming anymore, because her dad got laid off. They were devastated about it and so am I. Childcare is hard for many reasons but one of the biggest for me is how attached I get to the kids. She had been a part of our lives for almost two years now and it's so hard to think of her not being here. I haven't even talked to my kids about it yet because I'm afraid I'll start to cry. She is such a funny girl, so spunky and loving. A little red head. She would tell me every morning "Ms Riah I missed you, I love you." Isn't that the cutest? I hope that her dad will go back to work soon or find another job, because I don't want this to be a permanent thing. I do have another baby starting in May. Such a blessing, not quite a light at the end of the tunnel for me right now but I am excited about it. I have met with them twice now and feel really good about it. He is adorable, such a tiny baby. He was four weeks early so right now at five weeks old he only weighs around eight pounds. To me that's tiny being as my babies were around the ten pound mark at birth! They stopped by yesterday because I am loaning the mom my mobby wrap and we had another nice talk. I do thank God that I have always ended up with such wonderful parents to work with, and it looks like it's happened again. I was hoping to increase my income with the addition of another daycare kid, but at least I know we will be back to the old base line when he starts and that is better then nothing for sure.

I really have been trying so hard to focus on the positive, but I do feel like I'm in a nasty boxing match were my opponent is playing dirty and I have no chance at winning but I stubbornly get back up again. I feel like the only reason I keep dragging my bruised body up again and again is because I see my kids cheering for me on the side lines, waiting for me to hurry up and win. Because in there eyes I can do anything. And so I keep going with swollen eyes and heavy limbs determined to win for them.

Tuesday, March 23, 2010

This girl

This girl likes to chew on her momma.This girl has big smiles.
This girl likes to get the nose.
This girl is juicy.
This girl is ticklish under her chin.This girl gives sweet and slobbery kisses.
This girl is very enthusiastic about her love.
This girl can't ever get enough kisses.
This girl loves her momma.
...And this momma is madly in love with her...

Wednesday, March 17, 2010

Daddy's little girl

*
*
*
*
*
Certain is it that there is no kind of affection so purely angelic as of a father to a daughter. In love to our wives there is desire; to our sons, ambition; but to our daughters there is something which there are no words to express. ~Joseph Addison




Pinch patrol

Happy Patty's day to you! Every year for Patty's day we make a Leprechaun welcoming box in hopes that the wee little Leprechaun's will leave use some gold (candy) coins.

We work together to make it all pretty for the Leprechauns to give them a place to rest when they are out and about looking for the little kids who still believe in them. They are just itching to give away some gold to sweet and caring little boys and girls.


And of course we leave them "rainbow candy" because everyone know how much Leprechauns love rainbow candy. We decorate the inside of the welcoming box and make a little bed for them to rest in...in case they are tired. Every year the kids try to figure out a way to trap a Leprechaun too, but so far they out fox us every time. Those tricky little Leprechauns.



Every year the kids pick the best place to put the box. This year it was a cubby hole. Which then needed a ladder in order for the little Leprechauns to get to it. So Bubu decided that we should make one out of sticks. We used clothes pins and string and fashioned a "ladder" together. Before they went to bed they put the ladder up. Now we are waiting until their daycare friend gets her and then we will see if the Leprechauns visited us again last night in hopes that they left use some gold coins! And maybe, just maybe we caught us a Leprechaun!! ;)



You better be wearing some green!

Wednesday, March 10, 2010

Updates and ramblings

So I have been meaning to blog about this for a while now. Atty had his six week check up at Children's a couple weeks ago. I got to take all four kids. By myself. An hour each way. To the hospital. At lunch time. Through nap time. Tiny office. Waiting. Waiting. More waiting. I'm not going to lie to you all I was scared. So scared I planned ahead and even bought special supplies to entertain team *R* (as we call ourselves). I added in lots of extra travel time so that when we got parked in the parking garage we still had time to eat a lunch I had packed in the van where they couldn't run around and get distracted. I always like to add in extra time to nurse the baby too, which is never easy in public with three other little boys. That all went smoothly except they got food all over their clothes (of course) and so they looked nothing like their prior clean selves by the time we had to go in. Oh well at least their bellies were full...they listen better that way. Gave them a little pep talk about how we are a team and we've got to work together, did the team hand shake and away we went with a silent prayer for my sanity. All actually went well. I was so proud of them. Towards the end of the office visit they got a little squirrelly but I really just felt for them at that point because we were all feeling very Done myself included. The new cool pens and paper pads for each that I got worked to entertain as well as the special snacks I packed (do you see a reoccurring food theme here). We sang songs while waiting and I wrote words to sound out on the dry erase board in the office which they enjoyed. The harder part was when the doctor was in the room talking with me because they would then start to try and get my attention (or the doctor's) at times and that was a bit frustrating. Just because I really need to hear and process what Atty's doctor was telling me. The only time I started to sweat it was when two doctors were in the room towards the end of the visit and all the boys started to act out in different ways at the same time and I had to address the behavior while the doctors waited, just so that I would be able to hear. Sort of embarrassing. We survived though. I even had to take Atty to get A Lot of blood drawn at the end of the visit and not only was he amazing through the whole thing (which was awful, the vein blew before the guy got all the blood he needed for the tests, so he went to do the other arm and it didn't work and then he settled on the finger poke and squeeze to finish.) his brothers were also. I was distracted and sad when we left because there was a lot to think about and because they had decided to drastically up Atty's medicine which had me scared. They were even thinking about hospitalizing us again. I just wanted to cry. And yet I felt so overwhelmingly thankful for my wonderful children. I let them know how amazing they were and how their team work help me out so much and made an other wise hard trip easy-peasy (as easy as a trip with four littles can be). They felt pretty stinkin proud of themselves, as they should. We even got some pictures. Bubu's new favorite face. Ugggg. Look at Atty's great smile...even after getting all poked up. He got a new duck, his favorite thing ever, and he was loving it! I gave it to him when he was getting the blood draw to try and sooth things over. His brothers were so sweet about it and didn't fuss at all about the fact that Atty got something and they didn't. Which is hard for little kids to understand usually. I know that one well, I usually always have to buy three of everything! Which is why they rarely get new things, ha, ha!!

Oh and that stroller, yeah, it stunk. So embarrassing. It stunk and it was dirty and musty. I haven't used it since we moved and it's been stored out in the shed the whole time. I dragged it out the night before in the dark and shoved it into the van to be all prepared ahead of time. So I didn't notice the funky smell until I pulled it out and opened it up to go into the hospital. Atty wasn't walking very well at all at that point and I couldn't carry him and put the baby on my back, and hold onto Bubu and Spike, and carry every thing else too, so I had no other option but to use the nasty thing. Pretty humiliating. I guess we should have gone by the name of the stinky *R* team. Dirty kids, stinky stroller, can't get much better then that. At least they were well behaved little hill billy's.
So this is were we are at. For now. Three medicines and one that we went up on drastically. He has to take three of them in the morning and two of them at night. He was taking the third medicine at night but after a few days of that he started getting insomnia worse and worse to the point that he slept only about three fitful hours one night! I called and told them that between the little baby and a boy with insomnia I wasn't going to last so they suggested switching the med to the morning and that has been working a lot better. Atty is so tricky, any medicine that is suppose to be a sedative will make him hyper. This medicine that was keeping him awake is suppose to make you super drowsy which is why they wanted him to take it at night. He's got weird body chemistry I guess. I was reading in the side effects of this particular medicine that a small % of people got insomnia in the studies, and so of course Atty does too. He seems to like to fit into those small percentages. All the meds say that they make you drowsy, which they do make him act sort of "drunk" and fussy they just don't knock him flat like they do for others. Which is amazing considering how much medicine is being pumped into his little body right now. I have to admit I don't like it. I really don't. I do like that he is now (as of today) not having any seizures. Of course I like that. (Except for the tonic spasms he's still having those but that just comes out as a noise he makes.) ~I don't like that it is just suppressing the seizure activity not actually solving the problem (which I know they don't know how to do being as the brain is still such a mystery and all). I don't like suppressive medicine, even things like fever suppressors (I know, I know) I'm not going to get into a big long reason of why. I will say that I feel like when you suppress stuff instead of getting to the root of the problem, it can manifest it's self as a different problem because it's got to get out some how. That doesn't mean I never use medicine to reduce high fevers or get ride of a massive head ache, I just try not to. I'm a natural gal that's all there is to it, so I try other stuff first and often it fixes the problem. Am I getting weird enough for ya? Really that's stuff for a whole different post if I was so inclined. ~ Any ways I also don't like all the side effects of his medicine, sort term, and all the possible side effects long term. Some of the stuff straight out of the pamphlets is super scary. At one point they put Atty on a medicine, right before this last new one, that ended up making everything worse and that was really frustrating. It was a stupid mistake and they should have known better, even his main doctor said that. It was a really bad set back that should have been avoided. I don't like that it seems as if my child is an experiment. All the meds he is on haven't even been studied in his age group, nor have they been studied in this combination that he is on. I know that the doctors are frustrated too because he is not an "easy case" but they just seems so flippant about everything and that annoys me. I do feel blessed that his main doctor happens to be the only doctor I liked in our whole hospital experience, so that is nice. Although we of course still have different views hers being more main stream and mine being more alternative we still seem to be able to mutually respect each other. Something I haven't felt from any other doctor there. I keep reminding myself that we are hoping to get him on only one med as soon as it gets to a therapeutic dose and then ween him of the others, but in the mean time it makes me sick to my stomach giving him all this medicine and I keep praying that the side effects will be minimal and mild.
*
Have I mentioned yet that Atty is such a trooper...absolutely resilient...amazing...and quite possibly the sweetest kid on planet earth? I am so proud of him and his positive can do attitude!

Tuesday, March 9, 2010

What does cotton come from?

Last night my hubby was reading stories to the boys before bed.
*
I was hanging out in there playing with the baby girl.
*
Hubby is reading a short book about animals. He's talking about the animals and expanding on the book some. He gets to a page about sheep. He reads it. Then he says, "cotton comes from sheep" in all seriousness. Huh? Where as Bubu replies "Yeah" earnestly. Pause. Hubby suddenly realizing what he just said as I start to giggle and says "What am I saying cotton doesn't come from sheep!?!" Meanwhile I am choking on my laughter. Then he follows it up with a "Bet you guys can't wait to be home schooled"...Which is were I bust up and almost pee myself.
*
To his credit he was super tired...makes for some fun story time, for me.
*
I'm still giggling this morning.
*
Don't ask my son what cotton comes from anytime soon.

Friday, March 5, 2010

Thursday, March 4, 2010

I work in childcare, just look at my children.

Have you ever heard the saying that a carpenter's own house is always falling apart or a landscaper's own lawn is always overgrown...well I work in childcare. Take a good look at my own children.
I would never let a child I was watching look like this when in my care...but my own...well they wear pj's all day, take art work to a whole new level, and their faces are crusty as a general rule. Their hair is left unbrushed...and lately even their teeth in the mornings (gasp!) Most of the day they run around in underwear when they get tired of pajamas, or mismatched clothes inside out and backwards. Their socks don't match and sometimes not even their shoes.
So yeah, we are falling apart over here.

Even the baby spends the majority of the day in cloth diapers and drool. At this point it's like why get her dressed because her clothes are soaked in drool through her bib in less then five minutes. I have to say though that when she is dressed she looks pretty styling, probably because I am still dressing her myself...for now.
Soon she will be a ragamuffin just like the rest of them.