Overdue Taylor Update

It's been a long time since I've blogged here. I can't really give a reason why. I've started several blogs but never seemed to finish them. Maybe I'm practicing a subconscious form of avoidance.

Last week the school kept calling me and telling me that Taylor was running a temperature. It would start off around 100. They would call me an hour or two later and say it's 100.4 and I needed to come and get her. Anything over 100 requires her to leave school.

Of course, Taylor didn't want to come home, she loves school. This is her last year and I want her to get every possible day she can in. On Thursday when they called, I drove over to the school, signed her out, and then went to her class. The teacher said, "look, Taylor isn't acting sick and we know she has a problem regulating her body temperature so she can stay if you're all right with it". Well, that works for me. I told them to stop taking her temperature unless she is acting sick. *laughs*

Taylor was sick a few weeks ago with pneumonia again. I was telling "The Bossman" that Taylor was sick and he looked and me and said, "you know she isn't "sick" really, it's more like she just isn't doing well anymore". Well naturally I started to cry. He's right, but I keep telling myself that she is sick because that implies that she can get better and we all know that isn't going to happen.

She's happy and I guess that is the most important thing. She's stubborn and a fighter so she just keeps chugging along, doing the things that give her joy. She just keeps smiling through it all.

She has a 3 hour test coming up next week because of the poor circulation on the left side of her body. They need to figure out what's going on there. They have a hard time getting a blood pressure on her left side and her left foot and ankle stay swollen all the time. I'm hoping it's just another case of "Tayloritis" (anything that stumps the doctors is called Tayloritis). Sometimes I much prefer that than something serious…if that makes sense.

By the Way Doctor, I Forgot to Mention…

This past summer, Taylor loved just watching this

truck go 'round & 'round.

You know, I could tell you more than you would ever want to know about seizures, Trisomy 9p, g-tubes, and a myriad of medications. What I don't know a lot about is congenital heart defects. I didn't know that 1 in every 125 babies born in the USA has a congenital heart defect.

Because Taylor's heart defect was never a big issue as she was growing up, I never thought of her as a "heart baby". Apparently she is…or was. Now she's a "heart girl". There always seemed to be something else trying to take Taylor away from us that didn't involve her heart. Seizures have always been the big, bad evil thing going on in her life…they still are.

However, now that Taylor is in the first stages of heart failure, I have to start thinking of her heart first when she gets sick. A couple of weeks ago, when she was sick on the weekend and we had to take her to Urgent Care, I actually forgot to mention to the doctor that she has a heart problem. After listing her main diagnosis and the seizure disorder and all the seizure meds, I just forgot failed to mention that Taylor has a heart defect. It sounds bad, I know.

It's just that Taylor's seizures have been the main focus for 18+ years. Her seizures have been what put her in the ICU on a ventilator more times than I can remember. Now, it seems, I have a "sort of new" issue that I have to remember to tell the doctors. That way they won't freak out quite so much when they see her blood pressure and I have to go, "oh yeah, by the way…".

Bad Blogger

Taylor has a thing for playing in her sister's kitchen drawers.

I've been a bad, bad blogger lately. I think it's because things have been so hectic around here with everyone being sick and the business being busy that I didn't want to do a whiney post. But let's face it…the past few months have been whine-worthy.

However, I'm not going to give in to my inner child and be a crybaby. There are lots of good things I can post about that have been going on. While Taylor did have pneumonia…AGAIN…it wasn't as bad as the last time and she seemed to handle it better.

The business has been crazy busy with many, many computer coming in. Now that can be kind of a double-edged sword because we are so busy we barely have time to relax, it also means we don't have to worry about money. In this economy…that is huge. The Bossman and I did get a chance to get away from the office/house/Taylor/computers for an evening. We went to a Portland Winterhawks game. Man it was a good game but then I'm a bonafide hockeychick and any hockey game is a good one. The Winterhawks won and it was so nice to just be out with The Bossman, cheering on the team. He is looking to get us to at least one playoff game as they had a great season.

Taylor has been enjoying spending lots of time with her sister. Taylor loves playing with her 2 ½ year old niece. They are so funny together. It lets her get out of the house for awhile, gives me some time to just get stuff done without having to take care of Taylor, and since Brandy is Taylor's respite care worker, she gets paid…it's the trifecta of good things.

Hopefully, as time permits, I can start catching up on my friends' blogs. I really have missed reading them and I've definitely missed chatting with everyone.

Here's to a slightly slower paced life…at least for a week or so. *laughs*

I’m Home!!!!!

I meant to post this several days ago. I am out of the hospital and recovering. The doctor said it will probably take a month or so for my lungs to go back to "my normal" but I'm definitely glad to be home.

Being woken up at 4:30am every morning to have your blood drawn isn't really helpful to getting rest. Thank you to all my friends who wished me a speedy recovery. I will definitely update what's going on in more detail in the next few days.

Dawn is in the hospital

I just wanted to let you know, Dawn was admitted to the hospital yesterday for serious problems with her asthma, which is now pneumonia.

She did not come home today, and hopefully will be back tomorrow. The important thing is she is getting rest and the proper attention to help her heal.

Bossman (Paul)

What’s Been Going On

I guess it's time to update my blog and all my friends on what's been going on. I know I've been MIA lately. Everyone knows that The Bossman's mom passed away. I appreciate all your kind thoughts as does The Bossman. It meant a great deal to him.

The week after the funeral, I had to go to school and pick up Taylor. Of course she had a fever. It was 101 by the time I got there. She was also coughing a great deal. Now, when she left for school that morning, I hadn't heard a single sniffle, cough, or sneeze. I took her straight from school to the doctor. How can someone go from fine one minute to full blown pneumonia the next? I don't know why I act surprised, it's Taylor. That's what she does. Okay, I can handle taking care of Taylor, working, and trying to help The Bossman any way I can with his grief. I always wish I could say something profound that helps but all I can do is be there when he needs me to lean on.

However, 2 days after Taylor got sick, my throat started to hurt. Then my lymph nodes swelled up and my temperature spiked to 103. Yeah, just what I needed. The Bossman promptly (even though I didn't want to go, I don't argue with The Bossman) sent me off to Urgent Care. Sometimes it's annoying when he's right. I was thinking just a bad cold or something. Nope…I also had pneumonia complicated by my asthma and a viral infection of the throat. I can't remember the last time I was that sick. I just could not function. But we all know as mom's, we have to. The Bossman took care of the business…and wouldn't you just know that that week we got so many computers in, it was crazy.

I would feed and medicate Taylor, she would lay in her bed watching TV and looking at her car magazines and I would drag my body back to the couch. Of course, having a business out of your house means you can't be lying around sick in your pajamas so I had to lie around completely dressed. Not fun when your temperature goes up to 104. I had no voice so all I could do is gesture or write. The Bossman thought that was kind of fun because at night when we were watching TV, he'd talk to me and all I could was nod or smile. He said that was nice since he could say anything he wanted without any rebuttals from the peanut gallery.

Things are finally back to our normal. Taylor is back at school and so far so good…no calls. I am feeling almost 100%. I still have a lingering cough but with my asthma, that's normal. Now I'm just letting The Bossman sleep in while I take care of the office. He said we work in shifts. I have the early shift then he gets up and works until 2am. We are still busy as hell. There are so many computers in the shop right now that I've run out of room in our normal holding area…and it's big. In this economy though, we are doing very well and I am very thankful for that. People will come up with the money to fix their computers. I think sometimes they'll forgo food just so they can get on FaceBook, MySpace, or play WOW. Hey works for me. *laughs*

Hopefully I'll be able to catch up with everyone. I've started trying to leave comments on blogs. Bear with me as it might take me a bit.

*hugs to all my friends…I've missed you*

Revisiting a Poem

Taylor @ 4 years old

I know just about everyone has read this at one time or another. I just felt the need to share it again.

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly one hundred thousand women will become mothers of special needs children. Did you ever wonder how these mothers of special needs children are chosen?

Somehow 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, Matthew. Forest, Marjorie: Daughter, patron saint, Cecilia. "Rutledge, Carrie: twins, patron saint.....give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles. "Give her a profoundly developmentally disabled child." The angel is curious. "Why this one, God? She's so happy."

"Exactly," says God. "Could I give a child with a disability 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."

"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 'Mommy" for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see if as few people ever see my creations.

"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 she is here by my side."

And what about her patron saint?" asks the angel, pen poised in midair.

God smiles, "A mirror will suffice."