Aggressively Affectionate

As mentioned, Alyssa went to most of the seminars/break out groups that my mom and I attended at the 5p- Society Conference.

I figured at twelve years old, she was able to sit quietly and listen to what was going on if she wanted to do so. She wasn’t interested in going to the sibling outings or to child care. She actually laughed when I suggested child care. As if!!

I want Alyssa to understand how far her sister has come and also understand the things Olivia faces every single day. Of course, I also want her to just see her little sister as that, a little sister, the one person in the world who know exactly how to push her buttons and irritate her more than anyone else in the world and yet somehow also be someone in this sometimes cruel world who will always love her unconditionally.

One afternoon when we got back from one such breakout group, Alyssa was quiet for a bit. My mom and I thought nothing of it as we all got ready to go to the pool.

Finally, Alyssa figured out what she wanted to say. “Olivia isn’t really aggressive, is she?”

Obviously, Alyssa had been processing the fact that several parents had voiced concerned about how aggressive their kids tend to be, with both the parents and with sibings.

“Not really,” I said, just as Olivia pressed her lips to my upper arm. She’s been doing that lately, kissing until I have to tell her, “Okay, be done.”

Alyssa laughed at her sister’s antics.

I rolled my eyes and said, “Well, sometimes she’s aggressively affectionate, though.”

And this is true. Olivia loves to give affection. But only to those she’s very close to, as in, she’s aggressively affection with me, Tom and Alyssa. Sometimes, she’ll be aggressively affection to my mom but it’s usually aimed at those of us with whom she lives.

Later still, Alyssa admitted that listening to those parents talk about how physical their kiddos could be, she realized how lucky we are that Olivia doesn’t hit or pinch or pull our hair.

If you’ve got to put up with aggression, Alyssa decided, it really is better to have that aggression manifest itself as affection, because even if the affection is annoying, at least it doesn’t hurt.

My sweet Alyssa…she’s getting it. She’s seeing all that her sister is, all that she can be, all that she means to all of us and she’s realizing that even with all the irritants that come with having a little sister, we’re pretty darned lucky to have O in our lives.

For the record, as much as Alyssa might roll her eyes and complain about Olivia’s annoying habits, when Olivia felt outside the hotel last week as we were walking to our car, Alyssa was the first one to scoop her little sister up and carry her, skinned knee and all, the rest of the way to the car. How’s that for a protective big sister? Pretty awesome, if you ask me.

So Much to Say about the 5p- Conference

Okay, so I wanted to post more about the conference we attended the week before last but Olivia got sick and everything was thrown into chaos and yes, here we are.

What was the girls’ favorite part of the convention? Swimming in the hotel pool.

We went to the Indianapolis Zoo and it was lovely but it was soooooo hot that day that all Olivia could do was complain. “Why are we here when we could be at the hotel swimming?” she wanted to know.

Since this was our first conference, Alyssa chose to stick with us. There were several sibling mixers/outings but at twelve, Alyssa is not one to go to something like that one her own. If we’d brought one of her friends? Maybe, but not alone. I get that. I was very similar when I was her age and look at me now.

Olivia wasn’t sure what to think of the other kids in attendance. There were a lot of huggers and Olivia is not much of a hugger. She’ll stand there and take a hug, but she isn’t likely to hug back. She is one of the few shy kids with 5p- syndrome. I realize that is a huge generalization but…well, considering most of the kids/adults we met at the conference, it panned out.

It helped a lot going into this conference knowing that 5p- is a spectrum disorder. There are so many levels of the spectrum. There is someone like James, the keynote speaker, a man who wasn’t diagnosed with 5p- until he was eleven years old. He’s 43 now and works, drives, runs marathons, volunteers at the Special Olympics. He’s awesome.

But you know what? The others in attendance were awesome too, all in their own way. There were the kids in strollers/wheelchairs who brightened the room when they entered because their smile was so bright. There were the kids who giggled when they met new people.

Not every person with 5p- syndrome is going to go on to be a James. And that’s okay because every single person at the conference is loved dearly and that’s what really matters.

Olivia is adored by her family. Taleigha is adored by her family. Helena is loved by her mom and dad and big brothers. Matthew’s family loves him more than words can say. Amy’s parents are so proud of her and it shows when they talk about her. Katie’s mom can’t say enough wonderful things about her daughter.

So many of us attended that conference not just to learn more about the syndrome that affects our kids, we also attended because we’re just so damned proud of our kids. We want to show them off in a setting where they’re (and we’re) not judged, where their accomplishments shine for what they are, amazing achievements reached through love, perseverance, strength of character.

No one thought anything of the fact that Olivia carried around a small (think Christmas tree ornament sized, since, uh, that's actually what the shoe was originally supposed to be) gold show around all weekend. She needs some kind of comfort item to carry around and it can't be a stuffed animal because, duh, those things are gross, at least as far as Olivia is concerned. One mom commented that O had her shoe and the mom's daughter had a small (smaller than a Barbie) doll clutched tightly in her hand. In fact, rather than think the shoe was weird, more than one other child very much wanted to abscond with Olivia's beloved shoe. Their parents were awesome as distracting the kids from the shoe while Olivia tucked it into my purse for temporary safe-keeping.

No one batted an eye that I sat at breakfast, lunch and dinner and fed my eight year old. They were happy to see that very same eight year old was able to tell me, with words, when she was done eating. They were thrilled that my eight year old could tell me, again with words, that she had to us the bathroom. Everyone celebrated every single milestone, every achievement, every step, every word and every sign like it was the achievement of the year. Because each one is. Our kids overcome so, so much just to be here, to breathe, to eat, to wake up every single day and we celebrate them because they leave us in awe.

One grandma said, “I believe in miracles.”

I replied, “I get to live with one every single day.”

She wiped away a tear in agreement.

Well, It's Not Mono

I got home yesterday afternoon expecting a on-the-mend Olivia to greet me at the door. Instead, found a very pale, obviously still-sick Olivia laying on the couch, lethargic and feverish.

She started antibiotics on Monday. Yesterday was Thursday.

I sat and held her for a bit, her head on my lap. I was rubbing her hair and neck when I felt swollen glands in her neck.

That decided it. We were going back to Urgent Care.

I bundled her up, drove the eighteen miles back into town and we were actually seen fairly quickly at Urgent Care. This was a different doctor than the one we saw on Monday.

He agreed that after having three days' worth of antibiotics in her system, she should absolutely be better than she was presenting.

He sent us to the hospital for blood work.

We got home at 7:30, she fell asleep by 8:15 and we had a very restless night with her up and down most of the night, achy, feverish and cranky because damn it, she should be feeling better.

We received a call from Urgent Care this morning that O's lab work was back. She does not have mono. Yay, right?

Right, except since it's not mono, we don't actually know what it is. Her white blood count is down but the nurse said that might be because she's on antibiotics and her body is also trying to fight whatever is going on in there.

The suggestion she gave us was to continue to antibiotics, keep pushing fluids and get her to eat what we can and if Sunday arrives and we don't see improvement either take her back to Urgent Care or make an appointment with our family doctor early next week.

Ugh! I just want her to be well. I want her to stop hurting and feel better. I want us all to sleep better and well, this all just sucks.

But yeah, it's not mono so...that's one possible diagnosis that's been crossed off the list.

And She Slept

The last few nights have been rough on Olivia. Her fever seems to get worse in the night and this makes her miserable and well, we all know that misery loves company and in our house, this translates to a miserable Olivia loves a miserable Mom.

The night before last she woke up at 12:30 and cried out that she hurt all over. I went to her, touched her hot forehead and went to get her some medicine. I also brought her water with me and settled in next to her bed in hopes that she’d fall back to sleep, even if it was fitful, in just a few minutes.

Man, I’m stupid.

She tossed and turned and moaned and whined for over an hour. Some of the things she said/asked:

“Why do I hurt so much?”
“Where did I get these germs?”
“How did the germs get in my body?”
“Why does God even make germs?”
“Why can’t God just make me better?”
“When is the medicine going to work?”
“I think I’m going to cry.”
“Do I look like I’m going to cry?”

After an hour of murmuring reassuring answers to her questions, I gently suggested she try to sleep. She started to argue, in that sad (and yet SO annoying) sick voice, but I continued, “Sleep is another way, along with medicine, for you to feel better. When you’re sleeping, your body is fighting the germs.”

She looked suspicious (and sick) but agreed to try.

I kissed her warm cheek and went to my own bed, hoping desperately that she would sleep.

Fifteen minutes later, she called out, “Can I have the bunny?”

Ugh!

But…she’s sick. So I got up, found the bunny-shaped nightlight and handed it to her. I rubbed her back for a minute or so and then told her I was going to sleep in my bed and reminded her that sleep would help her feel better.

She played with that stupid bunny for over an hour, turning the light off and on, moaning every so often, and whimpering between the moans.

At 3:00, I finally gave in and asked her if she wanted to lay with me in my bed. I just couldn’t sit on the floor by her bed for another minute and if she was next to me, maybe the comfort of my sleeping body would help her. I don’t know; I was desperate.

But last night…ahhh, I’m hopeful we’ve turned a corner. She fell asleep around 8:30 and slept without a peep until 5:00. Can you even imagine? It was wonderful.

I’d given her Tylenol at 8 as a preemptive fever preventer. When she woke up at 5:00, she was warm but not burning hot. I got up and got her a dose of ibuprofen because, yeah, warm when she’s been as sick as she’s been, let’s not take chances. By 6:00, when I felt able to drag myself down to get the thermometer, her temp was 99.5, so yes, still low grade, but… ‘only’ low grade, right?

We’ll take our victories where we can.

The point is, she slept which means, of course, that I slept!! Hallelujah and amen.

So It Begins

It being orthodontic care, chapter Alyssa.

We had her consulting visit yesterday.

Much to my (but more so Tom’s) surprise, they actually started the process yesterday. She’s going to need quite a bit of work, due to a slightly crossed, deep bite. The doctor said he’s actually impressed that she doesn’t have more pain and that is due to the fact that she takes very good care of her teeth. Yes!!

The cost, though, is a bit of a shock to Tom. Why? I don’t know, maybe because he’s always surprised when things cost a lot of money? Tangent: Last year we took the girls to the Fort Wayne Zoo. This was Tom’s first visit to the zoo during which we had to pay in several years and the cost hit him hard. I think he often thinks we’re still living in 1955, when things were affordable and consistent with single income families. End tangent.

So even though I allowed the orthodontist to put separators on six of Alyssa’s teeth yesterday (she was in some pain last night, poor kid) he wants a second/third/fourth opinion on the cost.

Sigh. I’m worn out by the mere thought. Have I ever mentioned how much I hate using the phone? Especially for things like making appointments, asking for rough estimates for cost, etc. Ugh.

If we go with our current orthodontist (we’re going with our current orthodontist) Alyssa is looking at thirty (30!) months of orthodontic work. I know!! THIRTY months. We’re starting when she’s twelve and a half, and she probably won’t be done until she’s at least fifteen. I apologized to her for giving her my crappy teeth. And I wore my retainer last night in solidarity with her pain.

She still has eight baby teeth that need to come out like now. They’re impeding the growth of her permanent teeth, which yeah, not so good. The doctor said that he usually gives a time estimate of twenty-two months but for each baby tooth still hanging in there, he has to add a month. Yikes.

She has another appointment tomorrow at which they’ll add the spacers on her back teeth and at that point, we’ll talk about when she needs to have those baby teeth pulled.

I think we both just want to get this party started because the sooner it’s started, the sooner we can start the countdown to when it will be finished. And someday, like when she’s 27, Alyssa can thank me for the fact that she won’t have to pay for her own orthodontic work, like someone else we know.

Strep

It came on so fast. She was fine when we went to bed on Sunday night but when she joined me in my bed at 4am on Monday morning; Olivia was burning with a fever. Her hands, her feet, her skin was fiery hot.

I gave her some ibuprofen and water and we tried to sleep a little more.

When we got up at 6, I took her temperature. It registered 101.4. I settled her in the recliner with Tom, set the timer for three hours and told him to give her children’s Tylenol when the timer went off and then ibuprofen three hours after that in hopes of getting the fever down and keeping it down.

I went to work and worried all day long.

At 3:00, Tom called me and asked if I could meet them at the local Urgent Care at 4:00. He was brining Olivia in. Her fever had spiked to 103 at that point.

When I got to Urgent Care, Tom and the girls were already there. Olivia cried when she saw me, either in relief that I was there or just because she hurt. She told me she was weak and that she hurt all over.

I carried her into the office, noticed how flipping cold the room was and asked Alyssa to go to the car and get the blanket we keep out there. We settled onto a couple of armless chairs so that Olivia could lay with her head on my lap, the blanket covering her shivering body.

While we waited (and waited and waited) for our turn with the doctor, I noted that O’s breath was really bad. Like, sick bad.

It was finally our turn. I carried O back to the scale where she was weighed and then we found our way to the examination room. She was grateful to lay on the table available for exams. There was a pillow and her blanket kept her warmish in spite of her fever.

The nurse took her temp, her bp and her pulse. The doctor arrived and checked O’s ears, which were clear.

Olivia told he doctor that she hurt all over. The doctor had O put one knee and then the other to her (Olivia’s) forehead, explaining that kids with encephalitis can’t do that due to stiffness in the neck.

Then the doctor looked in Olivia’s throat. At that point, she put her pen down and said, “I don’t even need to do a swab. She’s got strep. Even if we swabbed her throat, it could come back negative and I’d still give you the same prescription for antibiotics and lots of fluids.”

We were told to keep her hydrated and watch her closely for the next few days, that if she doesn’t show marked improvement, we’re to take her back to either our regular doctor or to Urgent Care for further evaluation.

As of this morning, after two doses of Amoxicillin, she was already feeling better. The achiness seems to have abated and while she was feverish at 2am, after a dose of ibuprofen, as of 7am, the fever was being held back.

So we’re wait and watch and yes, we’ll baby her because Olivia is an easy child to baby. Even Alyssa babies her, though she wouldn’t be happy that I’m telling the entire world that.

Olivia asked a few times why she was so sick and how she got sick. I reminded her of the busy weekend we’d just had, all the new people we’d met and all the people who wanted to hug her. She managed to shrug off a lot of those hugs but there were a few kids there who were bigger and more determined to hug than Olivia was not to be hugged. Who knows where the bug came from? All we can do is fight it now that it’s here.

5p- Society Conference

My mom, the girls and I attended the 5p- Society Conference this past weekend in Indianapolis. It was lovely. There were over 80 families in attendance. It was amazing to see all the kids/adults affected by 5p- syndrome. The seminars/talks were great.

I think the best part (for me; we’ll get to the best part for the girls in another post) was the keynote speaker. James is 43 years old. He was diagnosed with 5p- syndrome when he was eleven years old. I know!! We thought Olivia was diagnosed late at 2 years and three months old. James has us beat big time.

James lives on his own, he works, he volunteers with Special Olympics. He runs marathons, he has his driver’s license. He inspires parents like me to keep pushing my child, to keep my dreams for her and her dreams alive as we both learn and grow through all this.

We attended a talk called Cri du Chat 101, which gave us the basics of the syndrome, talked genetics and debunked a few myths. Perhaps the best thing the speaker said was that our kids continue to develop skills even into adulthood. The speaker’s daughter is 23 years old. He said she has better verbal skills now than she did two years ago. She’s still learning, just as we all continue to learn.

I’ll be honest…I think if I’d attended this conference when Olivia was first diagnosed I would have cried…a lot. I would have been worried sick about the worst-case scenarios and maybe lost focus on what is possible when confronted with the fact that for a lot of individuals with this syndrome, life can be hard. Walking isn’t always going to happen, talking isn’t always going to happen, potty training doesn’t always happen.

But you know what does seem to happen at least most of the time? These kids, these adults are happy. They’re loved beyond measure and with therapies and medicines improving even as our kids improve, the prognosis gets better all the time.

Attending this year for the first time when Olivia is eight years old, I was able to look at my walking, talking, potty trained girl and know that life for her is only going to continue to get better. At least if I have anything to say about it.

I am honored to be a part of the 5p- family. I’m honored to be Olivia’s mother, one of many parents out there who will do absolutely anything to help her child reach her fullest potential and to love that child every step of the way.