Vaccines

Ooh, did the title of this post raise your blood pressure? Yep, it’s true, the gloves are on. I’m entering the arena.

Today, we took our new kitten to the vet to get a check-up and receive some of her vaccinations. While we were there, Jackson asked what a vaccination was, so I told him. “A vaccination is medicine that we take to avoid getting easily preventable serious illnesses.” The vet laughed and said that was one of the best definitions she’d ever heard. Jackson then asked if he had had vaccinations and I told him yes. He has. He is fully vaccinated. His sister, on the other hand, is not.

This fall, at Gracie’s five-year-old “well” child visit, her pediatrician approached me about foregoing her vaccinations. It shocked me — Gracie’s doctor is concerned that she is not well enough to receive vaccinations. I had never even considered not vaccinating. I’ve read Jenny McCarthy’s book, but I’ve also read a great deal of scientific literature and wholeheartedly believe the risks of vaccination are not nearly as great as the risks of contracting polio, measles, mumps, diphtheria, smallpox, whooping cough, etc., and suffering serious life-long side effects or even death. In fact, I had a friend in elementary school who had had polio. She was wheelchair-bound and she had deformed limbs. Her brain worked fine, though, and she was very nice. I wonder what happened to her…

But I digress. Eventually, Dr. A. and I decided to give Gracie her vaccinations, but on a delayed schedule, one at a time, with a month’s gap in-between each shot. I made several appointments so Grace could get the shots. I had to cancel all but one of those appointments. Each time, she has gotten sick shortly before her scheduled vaccination, and I’ve cancelled the appointment, worried about taxing her already weakened immune system further. During this past month, when we’ve all been so sick (especially me, to my chagrin), I got a chance to discuss it with Dr. A. again. She is in no hurry to vaccinate Grace — she is willing to wait forever, and would happily sign the paperwork to get Grace a medical waiver from vaccinations.

Facebook and the blogosphere are full of well-intentioned parents who think they are protecting their children by refusing vaccinations. These parents maybe believe in the long-debunked autism connection, or maybe they’ve heard a story about a friend’s brother’s girlfriend’s sister who had a bad reaction to a vaccination. Some of them seem to buy into a government conspiracy theory, believing the government is trying to — I don’t know, really, but vaccinations are involved, that’s for sure. They all seem to think they’re right, and no amount of science is going to persuade them otherwise.

These parents may think they’re doing the right thing for their own kids, but what they’re actually doing is endangering kids like mine. Gracie is not protected. If she were exposed to polio, she could get it, because she hasn’t been vaccinated against it. And, because she’s already fragile, the disease would surely wreak more havoc on her than another child. Shumayla from elementary school had deformed limbs, but Gracie could lose her life. It’s very, very scary.

I wish it were a choice for me. I wish I could face the decision and say, “Gee, I don’t know, I read this article on Facebook where someone had a bad reaction to a vaccination,” and just refuse it. I wish I had that luxury. Instead, I cross my fingers that the other children around Gracie are vaccinated so that she can benefit from their herd immunity. If there’s a measles outbreak like the one at Disneyland last year, maybe it won’t hit Gracie’s school because all the other children will be fully vaccinated and won’t carry the disease there. That’s all I’ve got to hang my hat on. It’s very, very scary.

Next time you hear someone worrying about vaccinating their children, please show them this post. Please let them know that instead of worrying about whether vaccinating healthy children is safe (it is), they should be worried about whether their unvaccinated children will interact with someone not healthy enough to receive vaccines. They should know that they are putting lives at stake — not their own healthy children’s lives, but sick kids’ lives.

Gracie’s life.

Posted in Uncategorized | Tagged , , | 1 Comment

Ballet

Each Friday, Gracie has ballet class. This is no small feat for someone with ataxia and peripheral vision loss! She always wanted to be a ballerina, but her disabilities made it nearly an impossible dream. But then, last year, someone shared a video on Facebook that made me Google ballet classes for special needs kids. In our large metro area, there is ONE dance studio for special needs kids. One. It is appropriately named Dancin’ Dreams.

Gracie is able to be a student there because she is assisted at each class by a helper, a physical therapy student at a nearby university (my alma mater, in fact). She has had two helpers per year each year she’s danced there – the helpers switch off weeks so these young ladies don’t have to give up every single Friday night. She loves it.

The ballet studio has closed circuit TV so the parents can watch their kids without being disruptive. Usually, I don’t watch; I take advantage of the uninterrupted hour to do some work. I forgot my work bag tonight though and got to watch my girl dance instead.

I have to say, it’s a little hard to watch. Gracie’s disabilities are readily apparent as the other girls leap and twirl across the floor. She either gets on her knees where she is more secure or falls all over the place or her helper has to provide significant support. Tonight, the little girls did these cute little ballet leaps across the studio floor one at a time. Gracie went last. When it was her turn, I saw her at the corner talking to the teacher and her helper for a minute before she even started. Eventually, she maneuvered over to the barre and held the barre with one hand while her helper held her from the other side. She did these terribly awkward leaps down the length of the barre.

Next, the girls took turns doing cute arabesques as they danced across the floor. Again, Grace went last. Again, she used the barre, with her helper on one side. She tried so hard. It wasn’t quite as hard for her, because one foot was on the ground at all times, but it certainly wasn’t easy.

Finally, the end of class came, and as usual they turned the lights off and did a freestyle dance. With the lights off, Gracie is almost completely blind. This time, during the free dance, the girls had plush snowballs that they were throwing at each other. Not only could Gracie not see the snowballs, she couldn’t feel when they bounced off her. It was hard for this mama to watch—I saw every snowball hit her, but I don’t think she even felt one. I saw the other girls scurrying around gathering the fallen snowballs, but she couldn’t find them at all. To her credit, she did eventually find two of them by the end of the free dance. She didn’t know when one fell out of her hands, but she did find them. That’s huge for her.

Gracie is so smart and precocious, and so familiar, that it’s often easy to forget just how different she is. But then, something like dance class comes along and BOOM, there are her differences on display for all to see. It hurts my heart to watch. She works so hard and will never catch up—she’ll never be able to easily leap across the floor, or find anything in the dark, or be a real ballerina. Part of me would be happy if she never wanted to go back to ballet again. But then, it’s good for her to try. It’s good for her to be like the other kids, even when she’s so different.

We’ll go back to ballet next week, and the next week, and the week after that. She will dance in the recital, helper and all, doing her awkward leaps across the stage. I will bite back those tears and instead be proud of my girl for achieving more than she realistically should be able to. My little Amazing Gracie… she’s, well, amazing.

Posted in Uncategorized | Tagged , , , , , | Leave a comment

Accommodations

This year, I’ve been involved in a leadership training class for parents of disabled children. The class occurs once a month on the third Thursday of the month. This month, the class coincides with a dental convention that Chad attends every year, so my usual monthly childcare is otherwise unavailable.

At the beginning of the class, we were told that there would be childcare provided to those who needed it—all we had to do was let the people in charge know ahead of time that we would be bringing our kids.

Today, I wrote an email to the person coordinating the class to let her know about my childcare situation. I said that I would prefer to bring the kids, but Gracie is “fairly care-intensive.” I asked for her to contact me ASAP to let me know whether it would be okay for me to bring my children to class. This afternoon, her assistant called me, wondering what “care-intensive” meant. I told her that Gracie isn’t potty trained, that she is a safety risk because of not feeling pain, and that it’s not physically possible for her to sit still and be quiet so I was worried that Gracie would disturb the other class attendees. She thought that it would be better if I skipped the class rather than bring the kids.

How silly of me to think that at a class for parents of disabled children they would be able to provide childcare for disabled children as well as typical kids. I assumed they would know that perhaps some of the children’s needs would be significant. I assumed they would be able to accommodate all the children, not just the ones who are old enough or high-functioning enough not to require intensive care. How silly of me.

I am sad to miss the class. So far, it’s been incredibly interesting. Each month, I come home from class energized and excited about the class. I will look for replacement childcare, but my prospects are limited. After all, Gracie is care-intensive, and we don’t have family here that I can call upon at a moment’s notice to watch the kids. Still, it’s frustrating. I thought that there, of all places, I would be able to find someone who understands the difficulties of finding care for special needs kids. I thought that they would understand that when a mom of a disabled kid says she might need childcare, she’s talking about for her disabled kid too. I thought they were different.

Part of me wants to call the organizer of the class and express my frustrations, but at the same time I know what childcare they offer there and know it’s not sufficient to accommodate Gracie. Also I don’t want to rock the boat; I can be a bit, er, acerbic in person, and I don’t want to make a biting comment that later I will regret. Still, they should know that by not providing childcare for the special needs kids, they are effectively discriminating against these kids who require special accommodations—and us parents, too.

So many aspects of regular life are foreclosed for families with disabled kids. We can’t just do so many things that people take for granted, like attending whatever school we want, or visiting any old park, or attending church services, or eating at restaurants, or finding summer childcare, or going to movies, or a million other routine things that most people don’t give a second thought to. We have to jump through so many hoops. We find solidarity among other families of disabled children because we know that although our journeys are different, they are equally tough. But I guess support does not equal accommodation, and even though they may understand what it’s like to face these hurdles, they cannot help scale them.

Posted in Uncategorized | Tagged , , , | Leave a comment

Sickos

A week before Christmas, I took Gracie to the ER because she had a 105.4 degree fever. The ER doc did blood work and tested Gracie’s urine but didn’t find a source for the fever. Then, a few days later, when Gracie was supposed to get one of her delayed vaccinations, she developed a mysterious rash on her face, causing us to postpone the vaccination. We were at Jackson’s well-child visit at the time, and the doctor glanced at Gracie and suggested that I try hydrocortisone for the rash.

It took me a while to get the hydrocortisone – I looked all over our house but we didn’t have any, and in the days right before Christmas I was avoiding all stores. Eventually, though, I got the ointment and started applying it to Gracie’s rash twice a day, along with Aquaphor. The rash mostly went away, except in her right nostril, where she still had some rashy spots and also had what looked like a big bloody booger but was actually a big bloody scab.

Gracie was unwell the entire time she was on Christmas break, but there was nothing specific to point to a certain illness. She wasn’t sleeping well, though, which is one of the big signs that something’s wrong, and she wasn’t eating all that well either. Jackson was sick on Christmas day, too; he lay around most of the day and twice I found him napping in his bed, which NEVER happens. He seemed better the next day, though.

The day before New Year’s Eve, I started to feel sick. I had the sorest throat I’ve had since my tonsils were removed almost 20 years ago, and the lymph gland in the right side of my neck was painfully swollen. The next day, the sore throat was somewhat better – more like the typical post-nasal drip sore throat – but my sinuses were full of goop and I felt icky. Plus, every time I tried to sleep, I would cough uncontrollably – the sinus goop was running down my throat and tickling it mercilessly. I didn’t do much that weekend. Jackson started getting a little cough, too, especially while he slept. Gracie was still not quite well.

On the following Monday, I emailed Gracie’s doctor about the rash under her nose. Dr. A. responded that it sounded like strep impetigo and I should bring her in for a rapid strep test. I made the appointment for Tuesday morning, not for an examination but just a nurse appointment for the strep screen. When I brought her in, I told the nurse I wasn’t sure if she was supposed to swab Gracie’s throat or the scab. She told me, with exasperation in her eyes, that Gracie needed to be seen. She called the doctor (the one we’d seen at Jackson’s well child visit, Dr. A.’s PA), who said that the rash was impetigo but Gracie’s throat needed to be swabbed too to check for strep throat.

Sure enough, the swab was positive. All of a sudden we had an explanation for the rash, the not sleeping, and even the high fever. Gracie had had strep for probably three weeks by that point. Chalk another one up to not feeling pain – anyone else would have said that their throat hurt, but not Gracie. She just didn’t feel right, but couldn’t pinpoint why. Poor kid. Time for another course of antibiotics… so much for keeping her off them.

Because Jackson had a cough, I brought him in later that day. His swab was positive, too. He also had conjunctivitis, which had started the night before. I made an appointment with my own doctor for a strep test the following day and Chad went to his, too.

Chad’s strep test was positive too, even though he was probably the least sick of all of us (he just had sort of a scratchy throat, nothing major). But mine was negative. I am by far the sickest; I have a massive sinus infection, I feel like my ear is full of pressure, I have a huge swollen gland on my neck, and every time I lay down I cough uncontrollably. But I don’t have strep.

It’s been almost a week now since the kids started their antibiotics. Jackson seems totally better; his eye is not red anymore and I haven’t heard him cough for days. It’s hard to tell with Gracie. The scab on her nose looks like it might be peeling up at the edges, and the rashy spots on her face have faded, and she’s sleeping better, so probably the antibiotics are helping her, too. Chad seems to be getting a mild version of my viral sinus infection; he has been coughing at night, but nothing like me. I am still very sick, annoyingly. I felt a little better yesterday during the day but was up all night coughing again. On Saturday my right eye started to look very red and started draining goo. Instead of going back to the doctor, I have been using some eye drops left over from the last time Jackson had conjunctivitis. Hopefully they will work.

I feel bad that Gracie was sick for so long. They didn’t do a strep test at the ER, which is why they didn’t find a source for the fever. She was sick long enough to infect our whole house, and she wasn’t able to tell me what was wrong. She definitely seemed off, but she didn’t seem all that sick, and if we went to the doctor every time she had a mysterious symptom we’d be there every other day. Not feeling pain really causes problems; we can’t just go by the normal sorts of signs for illness, and have to look at other things (like not sleeping well) that could have a million other explanations. We save doctor visits for the obvious stuff, and try to find causes at home for the less obvious things. But still, poor kid.

Cold and flu season is here. Hopefully we’ll get through this bout of illness and be better for the rest of the winter. I’m keeping my fingers crossed that this is the only course of antibiotics Gracie needs this year. Let’s hope so, anyway.

Posted in Uncategorized | Tagged , , , , , , | Leave a comment

The Story, Part 2

A long time ago, I wrote “The Story She Hates to Hear Me Tell” about how we figured out Gracie couldn’t feel pain. I never wrote the rest of the story, though, and I suppose now is as good a time as ever.

The first specialist we visited after finding out Gracie doesn’t feel pain was a neurologist. She did some tests in office, poking Gracie with a needle, checking for reflexes, a full neurological exam. She recommended doing an MRI of Gracie’s brain, which would have to be done under anesthesia. We scheduled it for that June.

During this same time period, Gracie continued to bite her fingers. An average of 7 fingers at a time had wounds in various stages of healing. The most fingers ever involved was 9. She started to get infections in the wounds, and had course after course of antibiotics that summer. Each time she’d get over an infection, a new wound would appear, each wound worse than the last. I got a call to pick her up from daycare one day because she had torn most of the skin off her right ring finger, plus part of the fingernail. I took her to urgent care for that wound, and they wrapped her hands in burn dressings then put big boxer-style bandages made of Coban around the whole thing. The boxer gloves were supposed to stay on until we saw a wound care specialist at Children’s Hospital the next week.

Our appointment with the wound care specialist, T, was two days later, but by the time they removed the bandages her entire ring finger was red, hot, and swollen. Another course of antibiotics for Miss Gracie… plus three visits per week with the wound care specialist for the next three weeks. T was amazing, one of the best providers we had seen by that point. She took a lot of time with Grace and with me, and taught me everything I now know about wound care (which, it turns out, is a lot – now, most nurses and doctors defer to me for questions of how to bandage Grace). She also introduced me to an occupational therapist at the hospital who ordered custom mesh gloves with silicone in the fingertips, so that if Grace bit her finger she at least couldn’t break the skin.

The first pair of gloves we had worked so well. Grace wore them 24/7, though, and they wore out in weeks. As soon as the seams started bursting, Grace started getting wounds again. We went back to OT for more gloves. The provider we saw the second time ordered a different kind of gloves, compression gloves, in the thought that maybe the compression would help Gracie feel. She HATED those gloves. She started getting more “degloving” wounds – wounds where she would strip all the skin off the finger by biting down and pulling. It’s horrific to write – for someone who hasn’t lived this life, I can imagine this is a hard post to read. Sorry for that. It really can be nightmarish at times, all the blood and all the self-inflicted wounds.

But I digress. So, in the meantime, we got the results of the MRI back. Gracie’s MRI showed she was hypomyelinated, meaning that the myelin sheath around the nerves in her brain was much less thick than it should be. The doctor decided to do some research and have Grace have a repeat MRI in six months, to see if Grace had delayed myelination or missing myelination.

Back to the wounds. Gracie continued to bite her fingers mercilessly. We were learning to distract her, to hand her something else to bite instead of her fingers, but it was hard. She became the master of mutilating herself in the car or at naptime, when we were helpless to stop her. She got one wound on her right index finger that led to her first major hospital stay.

At that point, I was changing Gracie’s bandages every other day, per the instructions from the wound care specialists. Sometimes I changed them every day, if a wound was draining a lot, but I relied on the wound care specialist’s expertise when she assured me every other day was enough. The thinking is that you don’t want to expose the wound to germs in the outside environment, so you don’t want to open the dressing any more than you have to. It sounds reasonable and is probably true for some people, but it was disastrous for Gracie. That index finger wound started to smell on a Friday night, but I ignored the little voice inside of me and decided to change the dressing in the morning (which was the second day). By Saturday morning, when I took off her glove to check the dressing, the whole thing was soaked with blood, all down her hand. I will never forget that panic, that terrible sinking feeling. I was shaking as I took the bandages off, and what I saw was terrible. Gracie’s finger was dissolving. Literally. The skin was pulling off with the bandage. It was mushy, it was bloody and pulpy and a mess.

Frantic, I called Chad, who had just left for work. He rushed back home and said, with tears in his eyes, “She’s got gangrene. You have to take her to the ER.” I sped across town the 25 miles to the Children’s Hospital. By the time we got there, I was hysterical. If only I’d listened to that inner voice… I knew I should have changed the dressings the night before… her finger was DISSOLVING! What do they do for that??? I sobbed to the triage nurse, and she took us right back to a room. She assured me it wasn’t my fault. It is one of the major regrets of my life – why didn’t I check that wound?

The ER visit turned into a political nightmare. Gracie had a fever when we got there, and the infection was streaking into her hand. T’s boss Dr. D, the Chief of Plastic Surgery and head of the wound care department, was the doctor on call. He didn’t think he needed to come in to the hospital and instead said for the resident to give Gracie one dose of IV antibiotics and follow up in clinic on Monday. I pleaded with her, saying that all the signs of infection I’d been told to look for were there and my daughter needed more than one dose of antibiotics. She agreed that it was a political issue, that no one could override the chief’s opinion even though Gracie needed to be admitted. (She was probably a pretty new doc – she shouldn’t have told me that. But I’m glad she did.) I did ask for a second opinion, but the second doc didn’t dare disagree with Dr. D. either. Gracie got one dose of IV antibiotics and we were sent home with a plan to change the dressing twice a day and bring her to the clinic as soon as possible Monday.

The finger continued to dissolve more and more with each dressing change. On Sunday night, a hard chunk lifted out of the finger. I had a fleeting thought that it looked like bone, but quickly dismissed it. Bones don’t just fall out.

Monday happened to be Jackson’s first-ever day of school, his first day of pre-K at St. B.’s. We all took Jackson to school that day, and I got Gracie a clinic appointment for later that morning with T. T unwrapped Gracie’s finger and was appalled. That hard piece WAS the bone – it just fell out. T took some pictures and got Gracie admitted. She was appalled. She couldn’t believe Gracie hadn’t been admitted Saturday. She told us she was getting us every consult in the book – neuro, OT, ortho, infectious disease (ID), special care, everything. Finally, Gracie was getting the care she needed. But I wouldn’t be there to pick up Jackson… I wouldn’t get to hear all about his first day of school… I wouldn’t even be there for bedtime.

After that hospital stay, things changed with T. She wasn’t as talkative with us and didn’t see us without another doctor in the room (usually Dr. D.). Eventually, she left wound care entirely and went to work in the ER. In retrospect, I think she got in trouble for her criticism of Dr. D. He made it unpleasant for her, enough so that she left the department. It’s pretty messed up, when you think about it.

Gracie remained on antibiotics a long time after that hospital stay. She had had gangrene and osteomyelitis, a bone infection, and would need to be on oral antibiotics for three to six months after the hospitalization. She would be monitored by ID every couple of months for bloodwork. Although she got many more wounds that fall, none were infected. The tip of her finger eventually turned black and fell off, with just a little nub of bony something at the end.

She eventually had that second MRI and the nerve conduction study. The MRI was unchanged, meaning that Gracie was not delayed in her myelination but rather had less myelin than she was supposed to. The NCS showed that although Gracie’s motor nerves were fine, her sensory nerves were nonresponsive. The actual test results for her sensory nerves were zeros across the board – can’t get much worse than that! We now had “proof” that she couldn’t feel pain, but no answers. Years later, I learned that even most kids who don’t feel pain have normal MRIs and NCSs. Grace was an anomaly.

To be continued, eventually.

Posted in Uncategorized | Tagged , , , , , , , | Leave a comment

Dreaming

I had a dream last night about Anchor Center, the preschool for blind kids that was so awful to Gracie. In my dream, the woman I saw at Starbucks a few weeks ago (in real life) held a ceremony to offer me a Christmas present, I guess as a way to atone for the wrongs perpetrated by Anchor. (It was an electric blanket—dreams are funny.) As I was leaving the ceremony, Gracie’s teacher Stef, the only one who continued to treat us the same through the whole ordeal, decided to walk with me across what became my old college campus. (Again, dreams are funny.)

Stef and I talked while we walked, and in my dream I was less polite and accommodating than usual. I kept interrupting her and not letting her speak, determined to say my piece. I told her I was glad Alice (executive director) and Andrea (preschool director) lost their jobs after the fiasco with Gracie, and it shocked her. I told her that Andrea was an awful human being, and a terrible fit for Anchor. I told her how it felt that the organization that repeatedly assured us that we were “family,” that they were there for us, betrayed us in such a way. Real family would never treat us like that. I told her a bunch of other stuff, too, generally expressing anger and frustration for the way we were treated.

As I started to wake up, there were things I wished I’d said to Stef, like how the whole ordeal affected sweet Gracie. My girl was going through the worst time of her life—she had just had to have surgery in which part of her body was removed. She was angry, scared, and frustrated, and wanted nothing more than to get back to her routine at the school she loved. But, when she returned to school, she was treated as a monster. She was told she was bad, her behavior was bad, she was a problem, she was too much for them.  Instead of being welcomed with loving arms into her family and “home,” she was shunned and rejected. No wonder my girl acted out. Although she is wise beyond her years, she was only 4 at the time, and her behavior was totally age-appropriate, considering what she went through. I don’t blame her at all for acting the way she did, and I am actually impressed that she made the choices she did. She’s a smarty pants.

I also remembered how her teacher, Caroline, had a terrified expression each morning when I would drop off Gracie. It’s especially obnoxious because Caroline’s daughter is autistic and does not feel pain appropriately. If there was anyone in that school who should have understood Gracie, it was her, but instead she treated Grace as a monster. She acted as if a scared 4-year-old child was something to fear instead of something to love and coddle. And then there’s how her other teacher, Sara, betrayed us completely by taking all the information I gave her about Gracie’s medical conditions and using it to get Gracie expelled. What a petty, two-faced bitch.

Dreams express the deepest notions of our subconscious. Clearly the wounds inflicted by Anchor Center have not healed, and an electric blanket is hardly enough to make amends. I have wondered before what would be enough for me to forgive them. I don’t think there’s anything they could do. I do remember thinking that all of them should lose their jobs and personally apologize to Gracie—part of that happened, Andrea and Alice lost their jobs, but Sara and Caroline are still teaching there, probably gossiping like biddy hens about whatever other kids or parents they don’t like. They are small-minded.

Stef is different. Even when all the rest of the staff treated Gracie as untouchable, a pariah, Stef was the same ol’ friend she’d always been. She loved on Gracie the way family should. I wish we were still in contact. She’s probably the only one who can mend the wounds Anchor inflicted, at least for Gracie.

Thankfully, the public school Gracie enrolled in after the fiasco with Anchor ended up being amazing. They loved on her the way Anchor should have. They treated her like a person, a little 4-year-old person who had been through some serious ordeals but was still sweet, lovable, kind, and amazing. They set her up for success in kindergarten, ensuring her IEP was filled with every accommodation she needed and that she’d get all the services she needs. They were, in a word, reasonable.

Dreams are funny. I’m not sure why this dream came up; I haven’t been thinking of Anchor or anything, haven’t been angry about their injustices for quite a while. Clearly there are still hard feelings, and no matter how much I may try consciously to move on, those wrongs will never be righted. But, as much as this post belies me, I am not bitter. All’s well that ends well—we learned that private school is not for Gracie, even private schools that purport to serve a special needs audience. We learned that public schools, even the crappy neighborhood one we’re assigned to, can be awesome. Although the population served by our neighborhood school is abysmally poverty-stricken, the teachers are amazing and Gracie’s helper is above and beyond any of our expectations. Gracie is thriving there.

Anchor Center gets a lot of accolades. Everyone wants to support the preschool for the blind children, and surely some of that support is warranted. But they have a dark secret, a skeleton in their closet, and its name is Gracie. Amazing Gracie, to be precise.

Posted in Uncategorized | Tagged , , , | Leave a comment

Happy Festivus

Today is Festivus, a holiday created by the great Frank Costanza of Seinfeld fame. One great Festivus tradition is the Airing of Grievances, and so I thought that might be a good theme for today’s blog update.

I actually feel great and have few grievances—days off do wonders for the psyche. I have been making Christmas goodies, wrapping presents, playing Christmas songs on my phone all day, etc. Also we had some appointments scheduled, like a pediatrician’s visit for both kids (non-ironic well child check for Jackson, vaccination for Gracie) and an oil change for my car. Also last Friday Gracie spent the day in the ER and I didn’t work, so I had to get some things done for work too. But now, all the work is done, mostly, and I can just relax and update this blog.

Thank you for bearing with me while I was too busy to write. It is sure to happen again, but I’ll probably be back to my weekly updates before too long.

So, anyway, the grievances. Let’s start with the hospital.

Last week, we had a snow day on Tuesday. I got a robocall from the public school at 5:23 a.m. telling me there was a snow day. If the public schools are closed, Jackson’s school closes too, so I knew both kids would stay home that day. On Tuesday, Gracie kept shivering and telling me she was freezing. It was cold outside, but not in the house, so the freezingness was odd. I finally checked her temp and it was 100.2 – high enough to not be normal but low enough not to be a huge concern. I decided to wait and see how she was before sending her to school the next day, but when she woke up in the morning she was fine. Hm.

I texted her helper to let her know Gracie wasn’t feeling well but wasn’t sick enough to stay home and to keep an eye on her, but never heard back. (Actually, I found out later that her phone was broken.) Apparently Grace did fine in school because she was okay that afternoon when I got home. She was okay again Thursday, too. Hm. Okay.

Thursday night was Jackson’s school musical, which was an adventure in itself. Jackson slammed his finger in the car door when we got to school, and it immediately turned red and looked swollen. I took him to his classroom, and between the wound care stuff I had in my purse (because, you know, I carry that stuff around with me…) and a popsicle stick from the teacher I splinted his finger, thinking I would check it after the program and would be able to tell by then if it was okay. When we got home, the finger was feeling much better and I decided to wait to check it until the morning. By morning it was fine – barely a bruise. Jackson is amazing. He has a strong and tough body, just like his mommy.

But I didn’t get to check Jackson’s finger first thing in the morning. Gracie had been moaning in her bed for quite a while when Chad woke me to check on her. She was freezing, again. Her face was cold, her hands were cold, her ears were cold. She legitimately felt cold. I fixed her covers and got her another blanket, but she was still cold. I lay down next to her so my body heat could warm her, but she didn’t stop moaning and writhing. Eventually, my sleep-deprived brain realized it was fever shakes (rigors). I took her temp — 100.8. Technically a fever but not one they would medicate at the hospital (it has to get up to about 101.8 before they want to treat it) but I knew she was still climbing so gave her some ibuprofen. She finally stopped shaking, which meant her body had caught up with the fever and she would reach the apex soon. I took her temp again—103.7. Yikes! That’s a very high fever.

By this time, it was almost 6 on my last day of work before a week-long vacation. I called Gracie’s school to let them know she wasn’t coming and texted my boss that I would not be in the office (with the expectation that I would work from home with Gracie). I decided to take her temp one more time before taking a shower. This time, the thermometer read 105.4.

105.4!!! The only other times she’s had fevers that high, she had raging infections (her knee last summer and the kidney infection of Oct. 2013). I showed the thermometer to Chad and texted her doctor, wondering if I should take her straight to the ER or wait for an office appointment. I didn’t get an answer—at least not right away; it was hours later—and Chad and I started talking hospital. With a fever like that, she would probably be admitted.

I sent Chad for some tylenol and got ready for the hospital, dreading the upcoming stay. Jackson’s birthday was Sunday, and there were little boys coming to our house Saturday, and it was trashed—I had planned to spend Friday night cleaning and preparing. Instead, I would have to spend Friday night in a stinky hospital room on a very uncomfortable bed. Somehow, Chad would have to get all his work done but still clean the house and take care of Jackson and his friends. It seemed hopeless.

When Chad got back with the tylenol, I took Gracie’s temp again. It was down to 103.8—not 105, but still a high fever. I gave her the tylenol and finished getting us ready for our day. We decided that I would take Jackson to school and then go straight to the ER with Grace.

By the time we got to the ER Grace’s fever was almost gone. I think the thermometer read 37.4 at the hospital—99.3. They did bloods and urine, which were both normal, and sent us on our way. We got out just in time to pick Jackson up from his noon dismissal. I was so tired that I took the entire day off work. That is a rare occurrence.

All’s well that ends well, I guess. Gracie had another fever Friday, and another one Sunday night, but otherwise has been fairly normal. She has a weird and unexplained rash on her face, too. She was supposed to get a vaccination at her doctor’s appointment this Tuesday, but we declined because of the mysterious fever and rash. Her doctor is weirdly supportive of this—it actually worries me that her doctor doesn’t think she should get vaccinations. We had a great time with Jackson’s friends Saturday and Sunday, and it was good to have the spotlight on my boy for a change. We have been having a wonderful week at home. Christmas is going to be amazing for all of us.

Merry Christmas, one and all. And a Happy Festivus, too.

Posted in Uncategorized | Tagged , , , , | 1 Comment