Four Months

Gracie’s last dose of antibiotics was on October 17. She has made it four months and about a week, which is either her longest stretch ever or her second-longest. When she was 8 months old, she got RSV, which turned into pneumonia, necessitating her first-ever course of antibiotics. She spiked a fever from the RSV on Easter Sunday in 2011—it’s easy to remember timelines when events occur on holidays.

After that RSV/pneumonia episode, Grace got pneumonia again the following October. Then again in December, then in February, which led to her first-ever hospital stay in February 2012. I remember clearly that she had a bunch of unexplained wounds on her fingers during that hospital stay—it was the beginning of her finger-biting, but we didn’t know it at the time. On Easter 2012, Grace bit her finger at church, which was the wound that turned on the light bulb and made us realize she doesn’t feel pain. She had a course of antibiotics for that wound too, and for many other wounds over the next few months, culminating in gangrene and her first amputation in August 2012. She had a five-month course of antibiotics after the gangrene/osteomyelitis incident, stopping antibiotics in January 2013. Five days after her last dose, she caught a nasty virus which again led to pneumonia and another long course of antibiotics. She finally was off the medicine again in about March 2013.

In June 2013, Grace bit open the finger with the amputation (and a few other fingers, too) and her bone was exposed. It was not long before the wounds became infected and she was again on antibiotics. In August 2013, we found Dr. D, the awesome infectious disease specialists who just switched hospitals, and she followed Grace through a shorter course of antibiotics. About ten days after her last dose of medicine, Grace spiked a fever—the day before we were supposed to fly to NYC to see a doctor who specializes in people who don’t feel pain. She got worse and worse over our trip and was admitted pretty quickly when we got home with a bad kidney infection. When she stopped the meds after that kidney infection, it was about 10 weeks until she developed a bad finger infection. That was January 2014. She was on antibiotics for most of 2014, usually with no more than 10 days in between courses for various infections. That all culminated in August 2014, when she had the bone infection and amputation and antibiotic resistance. She finished her course of meds to treat the osteomyelitis on October 17, 2014.

Today, I am taking Grace to the doctor because one of her fingers is badly infected. She removed her fingernail Saturday (I don’t even know how that’s possible!) and I’ve been having trouble keeping the wound dry. Yesterday, purple spots appeared in the wound. Purple is a bad color for wounds—it usually seems to indicate gangrene or tissue death. I texted her doctor but she never got back to me, so off to her office we go. I do not know if oral antibiotics are going to work for Grace; she has had so many infections and courses of antibiotics that they don’t work for her any more. I am worried that she needs to be admitted, but the finger doesn’t look bad enough for an ER doc to admit her. Hopefully her doctor will be able to find a solution; I’m not sure there is one at this point except to wait and see what happens.

But still, four months is great. She had a chance to start to recover from her antibiotic dependence. There’s a chance the medicine will work for her now. I’m not feeling optimistic but am trying to keep my hopes up that she will get by on oral meds. Fingers crossed… (Except the infected one.)

UPDATE: We just got back from the doctor’s office. Grace’s finger actually looks better now than it did this morning—could it be that her body is fighting the infection on its own?? Her doctor, who is absolutely awesome, took blood and x-rays, even though we both expect it to be normal, just in case Grace ends up being admitted so we can have a baseline. She didn’t prescribe any antibiotics. She knows as well as me that there’s no point in using a medicine that doesn’t work anyway. So, we’re going to wait and see what happens. Maybe, just maybe maybe maybe, we can get through a few more months without antibiotics. Still keeping those fingers crossed!

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Mourning

This past weekend, Gracie and I attended the funeral of the little boy whose sister goes to the school that kicked Gracie out last fall. It was heart-wrenching; those poor parents look haggard, as to be expected, and there is just nothing that can take away their pain. I was glad to be able to give the mom a hug, and the dad, too. They need to know how loved they are.

The funeral raised other emotions for me, because we were surrounded by people from Gracie’s former school. I was dreading seeing those people, but when the time came and I was face-to-face with them, I had no sense of animosity. Interestingly, both of her former teachers seemed to be fostering ill-will. The one who utterly betrayed us — who assured me over and over again that I could trust her, and then turned around and used all the information I gave her about Grace’s medical condition to get Grace out of the school — wouldn’t even speak to me. She has no reason to be upset with me. I have never done anything to her, other than trust her and confide in her. But she has done a grave injustice to us. She is the one who put on the band-aid that turned Grace’s infected finger into a life-threatening bone infection, so maybe she feels too guilty to look at us. I doubt it, though. I think she’s just small-minded. Who would have thought?!

The other teacher said hello to Grace but did not look at me at all. She is the one who called to tell me “Grace isn’t listening and it’s been 10 minutes.” So I guess I can see why she’d be upset with me — I pulled my daughter out of the school because of her phone call. She’s also the one who was terrified to have Grace in her class, even though her own daughter has an unusually high pain tolerance. Maybe she doesn’t want to look me in the eyes because she wouldn’t want that to happen to her daughter? I don’t know.

Despite these surprisingly bad reactions from the former teachers, the executive director of the school was classy as usual. I was not about to talk to her, but she approached us at the reception and thanked us for coming to support T & H. She may not have been happy to see us, but she didn’t show it. I am grateful to her for her reaction, even though I know she was the one who truly pulled the plug on Gracie. When we had that awful meeting with all the school folks, she was also very classy. Even though ultimately she ruled against my child, she was just in her approach. I respect that.

As for the other school staff that weren’t involved in the breakup, it was nice to see them. We got a chance to say goodbye, a chance to get some closure with these folks who really meant a lot to us. I found out from the kindly front-desk woman that no one knew what happened — they just knew that one day Grace was there and the next she was not. I told her I wasn’t sure we’d even be welcome at the funeral, and she gave me a big hug and said we officially were. She is kind. I am glad we got a chance to say goodbye to her.

And it was truly great to see some of the other parents. I care about these people, and apparently they still care about us too. I suspect that they’ve heard through the grapevine what happened, but they were glad to see us and we were glad to see them. I told J’s mom that Grace broke up with him and M (Gracie’s old “girlfriend”), and now she’s “dating” a different boy and girl at her new school. C’s mom and dad and I chatted while Gracie & C played, and we all realized we need to get our kids together for a playdate — they were just too cute together. The PTA mom from the school gave me a big hug. And even T, the mom who lost her son, seemed genuinely happy to see us. They truly are family, even if we’ve been dumped. And they are innocent bystanders, anyway — the siblings and cousins of the ex-boyfriend, so to speak. We are still allowed to like each other even if we are not allowed to be part of the family anymore.

It hurts to know that we’ll probably never see any of these people again. But the ultimate hurt is the loss of that sweet boy. At least the people from the school are still alive, and if I wanted to make a fool of myself I could reach out to them. T & H will never see their sweet child again. My little heartache is nothing compared to their huge ocean of sorrow.

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Loss

When Gracie was at the school for blind kids, she had a classmate who also had significant medical needs in addition to being blind. I always felt extra-connected to her mom, because we both knew what it was to have a kid with multiple difficult needs. This kid had a brother, a beautiful little boy with no special needs and a radiant smile. On Friday the 13th, the mom was taking her two kids to the library when they were hit by a car. The little boy bore the brunt of the impact and suffered a skull fracture. He died Saturday (Valentine’s Day).

I’m shattered by the loss of this beautiful boy. What a precious child, what a sweet kid, what a perfect boy. Why, whywhywhy WHY, did this have to happen? And why did it have to be him? His parents must have wondered a thousand times if their daughter would make it through her medical issues; they probably never considered losing him. It’s heartbreaking. Tragic. TERRIBLE. I ache for them, knowing what I feel for his loss isn’t even a drop in their ocean of sadness.

At times like these, people offer all sorts of platitudes – “God needed another angel” – “His work here was done” – “God only gives us what we can handle” – but I’ll not say any of those terrible things to his parents. What kind of God would take a beautiful almost-4-year-old child? There weren’t any adult angels to take instead? And what parent could endure this loss? What a terrible, minimalistic thing to say to someone whose heart will never be whole again. I don’t know what I’ll say to her, this friend who has endured the worst possible thing in the history of endurance, but it won’t be any of those awful things.

Grace and I are going to pay our respects at his memorial this coming weekend. I am dreading seeing the two-faced discriminatory a-holes from Gracie’s old school, but that is nothing compared to the emotions T & H are suffering through. They deserve every respect and kindness at this terrible, terrible time. Prayers for them – prayers for love and light and peace from the agony of their loss.

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Puddles

Gracie is doing amazingly well lately. In fact, she’s thriving. She is doing great at school, she is learning to write and draw (she drew her first-ever stick figure family the other day), and she is getting stronger and stronger. This may be the healthiest she’s ever been in her whole life—or at least it’s the healthiest she’s been in a very long time.

One of her cutest newly-discovered talents is jumping. She is getting really good at it, and her favorite jumping venues are puddles. We find every puddle in the parking lot on the way in to school, and she gears up and jumps. And jumps. And jumps and jumps and jumps. She LOVES puddle jumping.

I probably shouldn’t encourage her to jump in puddles, but it’s just so amazing. It was only a little more than a year ago that she really started to walk, and now she can JUMP! She does such a great job, too—she has great body position and lands really well without twisting her ankles. I’m so proud of her. It makes my heart swell every time—jumping is not an easy thing to learn for someone who doesn’t feel her feet, and each jump is a reminder that she once again defied medical logic and learned how to do an impossible task.

For Gracie, no gross motor feat is to be taken for granted, not even a childhood staple like puddle jumping, and each time she does it it’s amazing. So much is uncertain for Grace, and thinking about her future can be very scary indeed. But watching this kid defy the odds over and over again is the surest sign of all that things will be okay for her. She will overcome any obstacle. She may lose her sight, she may have devastating infections, but she will get through it because she is amazing. My sweet Amazing Gracie, puddle jumper extraordinaire.

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Brave

We had our first doctor visit of 2015 yesterday. I had texted with Gracie’s pediatrician Saturday because the wound on Gracie’s index finger, where she pulled out her little stump of a fingernail, started to look like it had exposed bone. After some serious soaking, though, the part that had been concerning looked much better. However, her brother’s eyelid became red and swollen, so we visited the doctor for Jackson. (While we were there, I showed Dr. A. Gracie’s finger and she agreed that it isn’t looking bad at all, so *whew* on that.)

Jackson’s eyelid is strikingly red and swollen. It looks terrible, especially when he first gets up in the morning. The doctor told us it’s a stye and prescribed some antibiotic eye drops, which he is to receive three times a day for the next week. Jackson, who feels pain extraordinarily well, cannot stand even the thought of the medicine. He starts screaming if I even mention the eye drops, and getting him to keep his surprisingly strong arms away from his face while administering the drops is a challenge indeed.

Jackson’s reaction to the eye drops is a stark contrast to his sister. For six months, we had to administer drops to both her eyes three times a day. She has macular edema — swelling in her eyes — and we were trying to lessen the swelling in order to improve her vision. It didn’t work, and after six long months we were able to stop the drops, which is a double-edged sword because we were unsuccessful at improving her vision. The eye drops were reported to sting, and she certainly didn’t like them. But, after a few days, she stopped fighting and allowed us to administer the drops. We know they bothered her, but she was so brave. She would steel her little chin and let us give her the medicine.

I am grateful to her for her bravery. She faces things that most kids — most PEOPLE — never encounter, and instead of crying or running in fear (which, by the way, would be perfectly normal reactions), she stands her ground and accepts that we are trying to do our best for her. She bravely faces needles, casts, eye drops, and any other crazy medical interventions we subject her to in the name of helping her get better.

Jackson is the opposite of brave. He is afraid of anything new, even if it’s helpful to him. Really, though, I’m glad he hasn’t had the experience with medicine and medical things that his sister has had. I’m so glad he hasn’t had to do stinging eye drops for six months. I’m glad he’s never had surgery, and he hasn’t had to go months without the use of his hands because of wounds that wouldn’t heal, and he hasn’t had to take terrible tasting antibiotics several times a day for months on end, and he hasn’t had to have IVs or repeated blood draws or breathing treatments or any of the other medical interventions Grace is too familiar with. I’m glad he hasn’t had occasion to be as brave as his sister. Still, I wish a little of her bravery would rub off on him.

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Accessibility

Even though Gracie is getting better and better at walking, she still tires fairly easily. It makes sense; her body does not work the way it should, so she has to work harder to do basic things like standing and walking. A few months ago, her OT gave us a referral to a durable medical equipment company, and we ordered her a new wheelchair/stroller. It came today and it is awesome! Gracie is sitting in it right now, watching “Sofia the First.” She loves it. I love it too – I can’t wait to go jogging and take her with me in her new stroller. It rolls very well, so it will be a big change from our old stroller that made me feel like Sisyphus.

We have come a long way since the first time we ordered an adaptive device for Gracie. When she was just a baby, her physical therapist wanted to brace her, practically over her whole body, to encourage proper posture. I resisted; it didn’t feel right to me. At that time, we didn’t know that Gracie couldn’t feel pain, but had we known my resistance might have been more well-founded (Gracie is prone to pressure sores). As it was, though, I was not ready to accept that she needed braces, and strongly resisted the therapist’s recommendations. Maybe it was just because she was so pushy and not very easy to work with. Either way, I found out a few weeks later that she was going behind my back and bracing Grace at daycare when I wasn’t there to object, so we fired her. Our new therapist worked with Gracie for a few months and again recommended that we try orthotics to keep Grace from twisting her ankles so much. Still hesitant, I eventually agreed. Chad was heartbroken because it reminded him of his childhood—he spent several years in a full body cast after extensive hip surgeries, and more years after that in braces, learning to walk. I was heartbroken because it meant she was different, she wasn’t normal, she couldn’t do it like everyone else.

Those little orthotics didn’t last long. Sure enough, she got wicked pressure sores each time we tried to use them. Plus, it didn’t stop her from trying to twist her ankles. In fact, she was pushing against them so hard her therapist was concerned she would fracture her tibia. She told us to stop using the orthotics. It was a relief to toss them aside, even though it meant we would have to look elsewhere for solutions to keep Grace from twisting her ankles. We tried taping instead, which worked for a little while. She soon learned to push through the tape, though, and again we were at a loss for what to do to protect her feet. It would make us cringe to watch her twist her ankles around, or put all the weight on the side of her ankle.  It is amazing that Grace made it through those years without an ankle fracture. 

By the time she was 2, we wondered how she would ever learn to walk. We knew by then that Grace had no response from her sensory nerves, so she was not getting any input from the ground. It explained her severe ataxia – imagine trying to walk without being able to feel the ground! We knew that if she would ever learn to walk, she would have to figure it out herself. The only thing we could do was keep encouraging her to try, so that eventually she might work out new neural pathways and learn the impossible task. We ordered her a reverse walker – like a little old lady walker but the open part is in the front, so it encourages proper upright posture.

The day the walker came was another sad day. We had to accept at that point that our daughter was (is) disabled. It’s not that we didn’t know before, but that shiny metal frame was a glaring reminder of her disability. It was awkward and cumbersome, and it was difficult for her to use it in our small house. We would try to get her to use it to take walks, but she tired out so quickly that we would end up carrying her AND the walker – a difficult task indeed.

Soon after the walker came, we found out about Gracie’s visual impairments. We regretted ordering the reverse walker instead of the regular one – a regular front-bearing walker would have also acted as a cane of sorts to keep her from falling down stairs or curbs. But at that point, we had already committed and Gracie was getting used to using the walker. We brought it to her old school for blind kids, and something amazing happened. In the school’s wide and brightly-lit hallways, Gracie learned to walk. She had plenty of room to navigate with her walker, and she formed those new neural pathways – she learned how to hold her body while she walked – and it wasn’t long before she ditched the walker and took steps on her own. It truly is amazing; without peripheral vision and without any input from her feet, she should not be able to walk, and yet she figured it out. That bright metal frame was the key to her success, and she still uses it. It gives her stability, so she can navigate the hallways at her new school without us worrying that she will lose her balance and take a hard fall.

When Gracie started at her new school this fall, we were so apprehensive. It is the school district’s only non-inclusive school, and I’ve been hearing about it since Gracie was a baby (mostly not-good things). I was afraid of sending my girl who has come so far to a school where everyone is disabled. I didn’t want to hurt her self-esteem – and I didn’t want to hurt mine, either. But when we got to the school for our tour, something amazing happened. The school is fully accessible, including the playground. The accessible playground opened my eyes. Grace can’t play on a regular playground unless there is someone right there waiting to catch her if she falls. But with the accessible playground, she doesn’t need a helper – she can’t accidentally fall off the side, she can get up all the ramps with her walker, there aren’t any ladders or ropes or all those other things that make regular playgrounds off-limits.

After that school visit, I realized that even though she’s disabled, she just needs a little help and she can get around like everyone else. A few pieces of adaptive equipment could change her world – could give her the independence we never dreamed of before. I started visualizing what adaptive equipment could help her in our house. I wanted to get her a frame for the toilet, so that she could start to learn to get her own pants off if she needs to go potty (she doesn’t have the balance to stand up and pull her pants down, but with bars to hold she might be able to do it). I wanted to get her a sturdy step-stool so she could use the sink without us worrying that the little toddler step-stool would slip out from under her, or that she would slip off the side. And, I wanted to get her a wheelchair – the kind that looks like a large stroller – so that she could go to parks, the zoo, and other places that require more walking than she’s capable of. This time, it wasn’t sad or depressing to order the equipment – it was exciting! My girl might be able to live a fairly normal life after all, if we only got her a few things to make it easier for her.

So today, the wheelchair arrived, as did the “handlebars” for the toilet. It wasn’t depressing at all! I’m excited to see if we can get her potty trained now – or at least, get her to the point where she can change her own pull-up. I’m excited to be able to take her places that were inaccessible to us before. I’m grateful for the opportunity to provide her a bit of normalcy. We have come a long way since that first sad orthotic delivery, and I’m so happy for her.

 

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Doctors

We got a letter yesterday informing us that one of our very favorite doctors (Gracie’s infectious disease specialist) is no longer at her practice and will now be working at a different hospital with mostly adult patients. My first thought was, “Well, I guess we’ll be going to that hospital from now on!” but then, as reason crept in, I realized that the hospital our fave doc transferred to won’t be able to treat Gracie’s frequent cellulitis and osteomyelitis, since it’s primarily a respiratory hospital. We will continue going to the lesser-known children’s hospital in town for run-of-the-mill infections, where Gracie has been treated enough times to have a solid history and loads of records.

I suppose it’s to be expected that doctors will come and go, but it was such a shock with this doctor. She is a solo practitioner who works under the umbrella of a bigger group, so it’s surprising to me that she closed her solo practice so suddenly. And, equally bothersome, she had surgery in November, so I’m worried that she had complications from her surgery, or that something happened as a result of her absence that jeopardized her and her practice. I hope she’s okay.

I have thought of her many times during our extended absence from antibiotics. I’ve wanted to reach out to her, just to say hi, but I was superstitiously worried that by contacting her I would somehow induce the karma gods to give Gracie an infection. I stayed away. Gracie’s health is more important than keeping in touch with a doctor, even one who is very nice and who I would hang out with socially if the situation were different. Now, though, I wish I had reached out.

The silver lining is that this particular doctor frequently told us we were one of her favorite families—told us Grace is one of her favorite patients. I know that if we needed her to at least weigh in on what antibiotics to use, she would. If Gracie’s pediatrician needed advice, she could still contact this doctor. I know Dr. D. hasn’t forgotten us, just like we haven’t forgotten her. I just hope she’s okay and this transition is good for her.

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