Tuesday, September 21, 2010

A trip to the ER

Over the last week I have learned a few things.

1) Finding time to study for class makes life a tiny bit easier.
2) There is a dollar jewelry store down the street from me--and lately I have been in need of some retail therapy.
3) It is a wonderful feeling when I know that my son knows who I am, and that only I can comfort him.
4) Smores over the stove, or over the fire pit taste just the same--except I don't get tackled by my 70 lb. golden retriever when I make them over the stove.
5) And NOTHING. And I mean NOTHING is worse than having to stay up all night listening to my little one struggle to breathe.

Let me start from the beginning. For about the last week Kannon has been having a runny nose, sneezing, etc. Then, on Saturday night (or early Sunday morning) Zach and I both woke up to Kannon coughing. For the next 24 hours all the symptoms began to worsen. We ended up taking him to the ER on Sunday night. The wait wasn't all that bad, especially for being at Children's Hospital ER at night. While we were waiting I told Zach that they would probably do a Chest x-ray on him to rule out any fluid in the lungs. I guess all of that schooling paid off, because I actually felt like I was a little ahead of the game, and I didn't feel at all lost. When the Dr. came in he began asking about Kannon's medical history. I told him about the p-ACC (the brain abnormality), the seizures, and the Tetrasomy i(5p) Mosaicism. After I mentioned that last one to him I paused and asked,
"Are you familiar with that?"
"Yeah" he said.

Even though he said yes, a part of me was thinking, whatever dude. You have no idea what I am talking about, and I can tell in your voice. After he was finished asking his questions, he left the room...and it was about 15 minutes later when he returned.

"Umm...Was your son diagnosed with tetrasomy?"
"Who is his Dr.?"
"Dr. Wierenga. He is a geneticist here."
"What did he tell you this meant?"
"Well it is a rare genetic disorder...and..."

Then he cut me off to tell me this.

"Yeah we actually googled it and couldn't find much information on it."

Really people? Am I on punked? Candid Camera? Did you really just tell me earlier you knew what I was talking about then left the room to go google it?....So, already the night isn't going that great. My son is sick, my doctor uses google (which made me wonder how many other doctors do this...not very reassuring is it?), and the night is just beginning.

The first thing the Dr. decided doing was exactly what I had imagined. I had just got through telling Zach that when they do the chest x-ray that they better shield him (with some form of lead to protect him from unnecessary radiation). All radiographers should do it, and most of the time they don't and the only true reason behind it is because THEY ARE BEING LAZY. Anyway, when I took Kannon back, we got him all set up and positioned and you will never guess what they didn't do....shield!!! So me being the "student" asks,

"Aren't you going to shield him?" and this is what the tech (who graduated in like the 1900's) told me
"Oh it doesn't really matter because we aren't giving him that much radiation to really even matter."

OOOOOHHHH....my blood was boiling!! First of all, for anyone out there who thinks a small amount of radiation does no harm, you are VERY wrong. Second of all, a child should always be shielded. Third of all, it is obvious that a person of Kannon's status will more than likely undergo more than just one radiology procedure done in his lifetime. Fourth of all, (I could go on forever on this subject) it is part of our rights that if I ask for him to be shield, then just shut up and do it. Don't give me a lame excuse about it not being enough to matter, when in all actuality it was your laziness that got in the way.

Sorry, my venting is finished.

Kannon cried the whole time they took the x-rays (a chest x ray usually consist of 2 different images). When the first one was over we started positioning him for the second. As we were doing this my eye caught the computer behind the counter, and on it was the results from the first x-ray. From about 10-15 ft away I immediately noticed that he indeed has scoliosis. For a second my heart just sank. Even though a big part of me already suspected it, there was still that tiny ray of hope that we would be told otherwise. I hurt for Kannon. It is hard watching my son constantly being put through diagnosis, after diagnosis, after diagnosis....and it never becomes any easier. Anyways, Dr. Google said that Kannon is just really congested. He also said that there wasn't any fluid in the lungs, and that the Chest x-ray looked okay in that aspect. When I asked about the scoliosis Dr. Google said that it was the first thing he noticed when he saw the Chest x-ray, and that it seemed to be pretty severe. He also mentioned that we needed to take Kannon to see his pediatrician for a follow up on Monday morning. In the back of my mind I could picture him sitting behind his computer googling SCOLIOSIS, then reading about it on www.wrongdiagnosis.com, and how if you suspect that you might have this, then contact your primary care physician. So this, we did.

After another long night of no sleep, and praying that Kannon could make it through the night without going back to the ER....Monday morning had finally arrived. Once the clock hit 8am I called the pediatrician and they fit him in the schedule at 10:45. Once we got there it was pretty obvious to the Dr. that Kannon wasn't just having "normal congestion". Just from reading the report from the night at the ER, Kannon's pediatrician had already decided on her own that the Dr. that helped us that night wasn't exactly the brightest one out there. She especially thought this after I told her the Google story.

I told her about the Chest X-ray, the shielding, the scoliosis, and everything else that I could recall from the night before. She decided on doing another Chest X-ray in her building because for some reason due to Dr. Google she couldn't attain the previous one. Long story short, she said Kannon has severe scoliosis and called me in her office to come look at the image. She also said she will try to get us in the Orthopedic Dr. sooner. She diagnosed Kannon with infectious bronchitis, and prescribed a medication used to treat whooping cough for precautionary reasons. She also wrote a prescription for a breathing machine, so he could have breathing treatments every 4 hours. Then told me that anytime Kannon has a cold, or sinus problem, that she can already tell that he is going to need the help from a breathing machine. Due to his low muscle tone, it is hard for him to cough out the stuff that he needs to, so he will have to be on a nebulizer for who knows how long....So between VapoRub, the Vicks humidifier, the nasal spray, the breathing machine/nebulizer, infant tylenol for the aches and headaches, the whooping cough medicine, and the nasal aspirator/bulb suction---eventually he will feel better and be able to breathe like normal again. Until then, we need your prayers! So far he is doing a little better :) PS He had his eye appointment today, and Dr. said everything thing looks great :) It is always nice when we get to hear some good news!

Sunday, September 12, 2010

Give Me Your Eyes

Give me your eyes for just one second

Give me your eyes so i can see

Everything that i keep missing

Give me your love for humanity

Give me your arms for the broken hearted

The ones that are far beyond my reach?

Give me your heart for the one's forgotten

Give me your eyes so i can see

I am so busy now that school has started back up, daycare started for Kannon, on top of all the Dr's appointments, cleaning house, and all of the other things moms do, that I RARELY find time for myself. However, when I do get that time I usually try to read. Right now I have started a book called House Rules by Jodi Picoult. My sister let me borrow it from her. I'm not even to the middle yet, and I already have my mother-in-law reading it too. It is about a kid with Aspergers Syndrome who is being accused of murder. It is VERY good, and I would recommend it to anyone. It has really helped open my eyes into what's it is like for a family with Aspergers Syndrome. Although there is only ONE who is diagnosed with Aspergers--from what I have read it seems to affect everyone in the family in some way or another, not just that one person. There is a part in the book where Jacob (he is the one with AS) is talking about how he doesn't know why people with AS are so sensitive to things like texture, color, sound, and light, or why they don't look people in the eyes. He goes on to say "when I don't look someone in the eye, and when other people very pointedly look away from me so they don't appear to be staring, I sometimes wonder if I even really exist." This part of the book just broke my heart. I will be the first to admit that every since I was little I have literally trained myself to not look at people who are handicapped for fear they would think that I was starring at them. How was I to know any different? We are all taught not to stare at people,especially those who expect people to do it. I never looked at it the way Jacob put it---but he described me to a T. I felt terrible after reading it, hoping that I had never made someone feel like that they didn't exist. We aren't sure how Kannon's life will pan out, but I would never want that for him. So the only way I can make some sort of a change, was to start with myself. So on Friday night I went to see a movie with some of my friends. We went to see The Switch-- I would recommend that one to anyone too. Anyway, before the movie, we ate at Falcone's and while we were walking we passed a family, and what looked to be the mom pushing her daughter in a stroller. It was pretty obvious that the little girl had some abnormality. And on any other day, when I would probably look away, I did something different. I starred at her, until her eyes caught mine, and I just smiled. Then looked at the family and smiled at them too--then I noticed the dad smile back at me. That's all it took...and this whole time I had purposely been avoiding it. I hope I made that little girl feel like she existed, even if it was for just a short second. Gradually, I have started to notice a difference in how the things going on in my life have changed the person I used to be. I have always loved the song "Give Me Your Eyes" by Brandon Heath. I feel like that is exactly what God is doing. Giving me "new" eyes so I can see the ones who think they are forgotten.

Finally some good news! Kannon went to his Cardiology appointment to have his heart "defect" checked out. Actually, it isn't really a defect it is more like a normal variant (meaning rare or unusual, but not necessarily abnormal). Anyway, they did an EKG and an echocardiogram. Turns out the Dr. ruled it out, and said everything looks great and that he just has a small heart murmur. He told us to come back when he turns two! Yay for Kannon :) This week we have NO DR. APPOINTMENTS....NONE! That is a first in a long time! We are still filling specimen cups. I am SO over doing that. We are on the last two cups, so we are getting closer! I got to talk to the neurologist too about doing the second MRI to rule out the arachnoid cyst--and she said that since there wasn't hydrocephalus, then there wasn't a need for her to do an MRI this soon. She said we will wait and do one at 12 months if Kannon is still having his seizures/infantile spasms. She also said that waiting to do an MRI at 12 months will allow them to see a "more mature brain" so it is all a waiting game right now.

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

I am headed to bed, thanks for all the prayers, and have a fabulous week :)

Tuesday, September 7, 2010

He's a big boy now!

As of September 1st Kannon is 5 months old! We are so excited for him and all of the progress he has made in just the past few months! The last few days have been busy for him too! He had his first lake trip this weekend. Some of our good friends offered to let us stay with them for a couple days, and it couldn't have been ANY better. Talk about some good quality time away from the real world. We got to fish, eat, fish again, and eat even more---good ole' southern food too! We had a big meal on Sunday. The neighborhood got together and everyone pitched in and bought varieties of meat to smoke in this HUGE smoker they got from the fire department. It was filled with numerous racks of ribs, chicken, pork chops, etc. Then there were tables and tables of different side dishes and desserts. I couldn't get a big enough plate to fit everything on...and I honestly believe I had the BEST banana pudding ever created! Of course, sweet tea was included. Do we even have to go there? Kannon hung out in the house, doing his favorite thing--swinging. We got back early on Monday because today was going to be a big day for all of us. I had a test in Radiation Biology (yuck), Zach started his first day at his new job, and Kannon started his first day of daycare! We got him all packed up the night before, had a bath, and snuggled at bed time. I was just trying to get all the lovin's I could before he went! When this morning came, everything went well. We got everything in the car, and out the door we went! Zach didn't have to be at work until 11:00 am, so he came to see Kannon's first day too. When we got there we took pictures of every step. They probably think I am some obsessive compulsive mom, but who cares! I probably am :0 Anyway, we took turns taking pictures in front of the sign and going through the doors. I was too scared to ask someone else to take the pictures, because they probably would have thought I was kidding, and then laughed at me when I told them I was serious! We walked in, and signed his name in on the pad (yes, that required a picture too)! He was the first one there, so Kannon was making a good impression already! The lady in charge of the infant room is Mrs. Kelly and as soon as we got there she made us feel at home. Everything was fantastic! Until it came time to go. I was proud of myself for waiting until I got out of the infant room to start crying, but waiting until I was completely out of the building (10 more steps) was out of the question. Anyway, Zach hugged me and held my hand and let me know everything would be okay. He was much stronger than me. When we got in the car he even made the effort to plug my iPod in and play my favorite song as we drove off. Then, it wasn't 3 hours later I went to pick him up. It was good for me that we got out of class early after the test, that way it was a only a short time for him at daycare. I think it helped break us both into it. Anyway, we still have a lot to do today---like go to the zoo! Have a fantastic Tuesday, like we are!