What is a 5 letter bad word that begins with S?

S-H-U-N-T!

I am very frustrated and tired. I dislike shunts! I dislike that fact that 2 of my children will forever need a shunt to function in their life. I dislike the fact that, yet again, my daughter is reacting to a shunt tubing. We are getting down to the nitty gritty and I am becoming terrified of what will come if we cannot get a shunt for her that she is not allergic to. She HAS to be shunted. She cannot function without her shunt. She will loose vision also, if not shunted.

I have, as gracefully as possible, watched my child go through a revision, wound infection, shunt track infection, PICC line insertion, home IV antibiotics, PICC removal, too numerous allergic reaction and drug sensitivities to list, severe abdominal pain, allergic reaction to her shunt, meningitis, peritonitis, surgery to externalize her shunt, surgery to remove her shunt,picc line, procedures out the wazoo, surgery to replace her shunt, more doctors, more pain, more narcotics, another surgery to change out tubing, skin testing and now again, severe abdominal pain, shunt track pain, neck pain, light sensitivity, severe head pain....and now either allergic to her tubing or brewing an infection.

Which one is worse at this point in time? Meningitis would make her very sick, for all intents and purposes it could be fatal. However we would only be removing her shunt and then eventually replacing it. If she is allergic to it, mark off ANOTHER shunt tubing type and then we are down to 1 tubing.

Where do we go after that? No one knows. At what point is watching your 8 year old child suffer in pain and take narcotics that she should not even know the name of but call tell you her dosages and times...at what point does SHE stop taking the punches? I know that God has a reason for all of this, but seriously God....I am asking you to please show us the end of this path soon. One that has a marvelous outcome for her. Lindsay is honestly one of the most remarkable little girls that I have ever met. She continues to function even though her pain is over the top. Today she did beg to go to the hospital. And I would not give in. They cannot do anything for her there. I pacified her by emailing Frim. Telling him what is going on and our plan is to do a shunt tap and rule out/in if she has an infection.

I am a bit of a bitch. I am so fed up with people's crap whining about a little fleck of a problem. A problem that they make into a huge ass drama mountain. I just want to take my flip flop off and smack them upside their heads and scream...WAKE THE HELL UP!!!! YOUR CHILD IS HEALTHY!!!! SHUT THE HELL UP! But I do not. I listen to their crap, roll my eyes at things they whine about and go on. I am a firm believer that everyone's issues are big to them. Honestly, I am though I realize that this rant says otherwise....But people just need to STOP for 1 minute, reflect and take time to smell the roses. Appreciate what they HAVE instead of whining about what they DON'T have or what they WANT to have. Appreciate that little person in front of you....One day something can happen and who they are at this moment can be snatched away from you.

My vent is done.

Frustration

I have not blogged much here recently because so much has been going on and I have no clue where to start. I am so frustrated with everything.

February-

Shunt revision, allergic reaction to dermabond, wound infection, shunt track infection, hospital stay, PICC line, more allergic reactions to vanco, ceftriaxone, oxacillin, ancef, clindamycin, at home IV antibiotics, strep throat, dressing changes, another hospital stay.

March-

PICC line removed, worsening of head and belly pain, abd pain, local ER for "strep throat?", admitted for UTI to local hospital, transferred the next day to U of C Comer, shunt tap, blood work, xrays, transfer to PICU, sedated, shunt externalized at bedside, ultrasound, surgery to remove shunt, meningitis, peritonitis, CT Scan, lots of pain, transferred to neuro floor

April-

Lots of pain, nausea, vomiting, CSF leak, hallucinations, 6th cranial nerve palsy, my mom has a heart attack, surgery to replace shunt, allergic reaction to Shunt, allergist, steroids..... and so it goes

May-

A lot of the same

June-

Still more of the same

The same thing is that this is just Lindsay. Life is frustrating and I just need a brief break. :)

Expanding the family...

Last August Darren and I seriously began discussing expanding our family. We decided the pros and cons and then determined that we needed to make sure that we found just the perfect addition to our family. Last week I found out that if everything goes as planned, we will be adding to our family in mid to late September. :)

A dear friend of ours has an amazing and beautiful English Mastiff (Sirabi) and she was the reason Darren and I began our plans to expand our family. Last week she went into heat and thus the learning curve has begun. I never realized how much work went into breeding a Dog. Our dog growing up, Princess, was the town slut and she was knocked up every time she went into heat. (well maybe NOT every time but it sure as heck did seem like it) She had puppies with "King" and "Corky". Both of which thought that they were the town's Free Stud Service. :) So, now I get to watch the process unravel, and NO! I am not WATCHING THAT PROCESS occur!!! I am so excited. The kids and Darren are so very excited! :) Yeah Us!!!

Oh...and by the way....those of you who thought that I was saying that I was pregnant....Oh...I KNOW who you are (smart asses) HAHA. THAT is not going to happen. I finally realized HOW that occurs and we threw the turkey baster away! :)

A Mother's Lie

I stole this from a caringbridge page.

Mothers Lie

By Lori Borgman

Expectant Mothers waiting for a newborns arrival say they don't care what sex the baby is.

They just want to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more.

She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.

She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.

She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn't close.

The doctor's words took your breath away.

It was just like the time at recess in the fourth grade when you didn't see the kick ball coming, and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.

It didn't seem possible.

That didn't run in your family.

Could this really be happening in your lifetime?

There's no such thing as a perfect body.

Everybody will bear something at some time or another.

Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.

Mothers of children with disabilities live the limitations with them.

Frankly, I don't know how you do it.

Sometimes you mothers scare me.

How you lift that kid in and out of the wheelchair twenty times a day.

How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you're ordinary.

You snap, you bark, you bite.

You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling,

"Choose me, God. Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you.

From where I sit, you're way ahead of the pack.

You've developed the strength of the draft horse while holding onto the delicacy of a daffodil.

You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability.

You're a neighbor, a friend, a woman I pass at church and my sister-in-law.

You're a wonder.

Happy 5th Birthday

My Sweet baby,

I cannot believe that you are 5. I am not sure where the time has gone. You are such a cute little thing and you have such a mind of your own. You are battling the being a baby and being a big girl. You still want to be THE baby, except when it suits you to be a big girl. You are such a happy little person and you like everyone to be happy around you.

...You love dresses... You ask for them ALL the time. You wear them in the winter and love your summer dresses.

...You despise writing... You still cannot/will not write your name. I believe that you can, but getting you to do it is something else.

...You act as if you cannot identify your numbers, but when I forget "frozen pizza" on the grocery list you sure did quickly point it out. :)

...You tell stories... Like telling Aunt Jane and Karley that Daddy throws Gabe down the stairs and broke his head/arm/leg...whatever body part suits you that day. You also like to tell stories about your travels with Aunt Jane to England and India and how you shopped for ballgowns and danced with Princes and rode on elephants. I think I particularly like the one when you told me that you had your nipple pierced.

...You have your siblings so wrapped around your little finger you do not have to do anything! They baby you and you know how to play it up.

The other day, Lindsay and I were sitting on the bed with the laptop looking at pics of flowers. I was trying to decide if I was going to try my hand at begonia's this year. You have been having a bit of an issue with wearing clothing/panties lately and you were running around the house as "streaking Bare". I told Lindsay, "See this is a Begonia." You stopped running and came back to my doorway. You placed your hands on your little hips and said to me, "Oh Silly Mommy, it is a BA-GINA not a BA-GONIA!!" Of course I could not let this go and I informed you that it was a VA-gina not a BA-gina and that we were actually looking at FLOWERS. You said, "Oh silly mommy, I can call it whatever I want. It is MY bagina!!!" Then you ran off. A few seconds later you were back at my door and you said (as serious as could be) "And technically mommy it is called a LA-BIA it protects my BA-GINA!" How can you argue with that.

I now have to carry a pair of your panties in my car. One day when we were trying to leave for Chicago I went to fasten you in your carseat and I lifted your skirt to fasten the bottom belts and WHOA!!! Holy Moly!!! I was greeted by you pantiless bottom. Had the kids fasten you in, then we would have been in Chicago and you would have had no panties on. *yikes* You informed me that "Panties are optional". Ummm...not when you are wearing a skirt little miss. We have not instituted PANTY CHECK on our way out the door.

You are truly the perfect ending to our family. You complete us and make us laugh the entire time.

The First time I held you

Your are 5!