Pitter Patter

I read a post on Love That Max recently where the mom wrote she will never get tired of hearing her son talk, because it was something they didn’t know if he would ever do. Those hard-won milestones are never to be taken for granted. For Max, the hard-won milestone was talking. For Gracie, it’s walking.

Gracie didn’t make any of her gross motor milestones on time but she was really delayed with walking. We were not sure she would ever learn to walk, and certainly not unassisted. But she did. She first learned to walk unassisted during the year she was 3, thanks in large part to the help she received at her old school. The hallways were wide and clear, the surfaces were smooth and hard, and there were always helpers at arm’s length. These things, combined with regular use of her walker, helped her learn to walk. She had to learn by doing because she could not learn by feeling.

Gracie does not have that inherent balance the rest of us have. When she’s standing still, she wobbles. She can’t feel her feet at all, so it makes sense that it would be hard for her to trust that they’re on the ground. (Indeed, oftentimes they are not—she is the queen of rolling her ankles.) Plus, since she doesn’t have peripheral vision, she doesn’t have that visual cue when her feet are planted. Little babies just learning to stand have better balance than Gracie. The medical term for Gracie’s lack of balance is ataxia, which in the vernacular is loosely defined as walking as if you’re drunk. Due to her lack of balance, it’s actually easier for Gracie to walk than to stand still, and it’s not that easy for her to walk.

When I see little babies walking around, my heart aches a little. Gracie will never have that. Gracie will never be that stable and coordinated. She will never have the balance that the rest of us have inherently. But what Gracie has is so, so special. Gracie has hard-won skills that required determination and much, much more effort than they require from the rest of us. She will never pitter patter, but I will never get tired of hearing her feet stomp down the hallway. That STOMP STOMP STOMP is a beautiful sound.

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Sunshine

You are my sunshine
My only sunshine
You make me happy
When skies are grey
You’ll never know, Dear,
How much I love you.
Please don’t take my sunshine away.

When I was pregnant with Gracie, I used to sing that song to Jackson every night. It was a stressful pregnancy, filled with worry about the baby’s mysterious health conditions. My bright little blonde-haired boy was my sunshine, my reason for not collapsing with worry. He pushed the clouds aside for me during that dark time.

It is very, very stressful for Jackson when Gracie is in the hospital. His life is turned upside-down when I’m not here to cultivate peace. He worries about his sister, wonders what could happen to her, and he misses me so much. We were gone six days for the latest hospital stay, and he suffered. Even though the out-of-town family was here, which helped distract him, he did not forget the aching longing for his family to be complete. Now, after we’ve been home more than a week, he is still recovering from Gracie’s illness.

The first time Gracie had a long hospital stay, she was admitted on Jackson’s first-ever day of school. She should have been admitted that Saturday when I took her to the ER because her finger was dissolving, but they sent us home that day. Her finger continued to dissolve more over the weekend, and at her previously-scheduled appointment Monday, her regular wound care specialist admitted her. That Monday should have been Jackson’s special day. He went to school that morning for the first time in his entire life and deserved to have his mom there for him when he got home, waiting for him with a hug and a smile. He never got that—instead, his mom was in the hospital with his very sick little sister, where we stayed for several days. Because of that first long hospital stay, there is a place inside him that is permanently worried I won’t be there when he gets home.

Jackson has been doing a summer day camp this week, one that he was at several weeks last summer and one week already this summer. For the first time, he is not enjoying himself. He has been crying almost every day when we’ve gotten there to bring him up. He complains that the other kids won’t play with him, that no one wants to be his friend, that the counselors aren’t picking him for games, that he is lonely. Reading between the lines, though, I think he’s still reeling from Gracie’s week in the hospital. He is worried that we won’t be there when he gets home. He is afraid that something terrible might happen to his family. He thinks we might forget him in all the worry about Gracie.

I had a talk with him tonight to try to assure him that I would never, ever, EVER forget him. I told him that even if the worst possible thing happened, we would get through it. He told me that the worst thing he could think of happening to Gracie is she would have surgery. (Thank goodness his thoughts are not as dark as mine.) I told him that if she had surgery, she would get better, and reminded him that she has already had surgery and she got better. We talked about how in all these times he’s been at camp, no one has ever forgotten to pick him up. Then we talked about lighter subjects, silly things to help put a smile on his face. By the time he went to bed, he felt a little better.

He may never know how much I love him. He is my sweet, sensitive, caring, good boy. I just wish I could bring the sunshine back to him.

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Happy Fourth of July!

fireworks

Today, we celebrate our country’s independence. We celebrate our freedoms, our triumphs, our patriotism. But Gracie and I are having a different sort of celebration. We are celebrating the beginning of healing from infection.

Gracie is still in the hospital and we’ll be here at least two more days. Yesterday was the first day she showed improvement (instead of worsening) and had no fevers. She will need one more day of fever-free improvement before we can try transitioning her from IV antibiotics to orals. If she handles the transition to orals well, we can go home next week – probably Monday or Tuesday.

We are going to miss the fireworks tonight. Our city has a great fireworks display, and I’m a little sad that we’ll miss it. BUT, no fireworks display is worth risking Gracie’s health, and I’d rather be stuck here in the hospital with her than home worrying about whether she’s going to be okay. She is where she needs to be. I want her to stay here until there is no doubt the oral antibiotics are working – if that means we’re here a month, so be it. (Not that I think we will be here a month, but if that’s what it takes I’m in for the long haul.)

The infectious disease doctor just came in the room while I was writing this. He thinks she has more going on with her knee than “just” cellulitis. He thinks she has prepatellar bursitis, or an infection of the bursa in her knee, and he told me it could take weeks to resolve. Maybe my estimate of a month wasn’t as far off as I hoped… I spoke to him about making sure she does well on orals before we leave and he agreed. *WHEW* – thank goodness for good doctors who listen to the patients and their parents.

But enough boring hospital talk. Today is a day for celebration, for grilling out, for watching chemical explosions in the sky. My heart aches to be with my son – holidays are for family and ours is divided. I hope that he has fun today without us. I hope he can enjoy himself and not yield to the heartache I know he feels too. I hope he’s enjoying the long-awaited visit from his paternal grandparents, and I hope they’re spoiling him. Siblings of special needs kids are silent victims. Everyone worries about the kid in the hospital, and with good reason, of course!, but not many people remember the siblings at home, separated from their family and worried about their sibling and perhaps too young to have good coping skills for this sort of deep-down stress.

Thinking about Jackson reminds me that all over the country, families are divided today. Children are in the hospital undergoing treatments and therapies while their healthy family members wait and worry at home. Babies are in the NICU while perhaps their parents steal a few guilty moments to join the holiday festivities, all the time worrying about their baby in the hospital. Parents are in the hospital while their children grow up at home without them. I am sorry for these families. Love longs for unity.

Today, we celebrate life, liberty, and the pursuit of happiness. And those of us who will spend the holiday in the hospital celebrate small victories – no fevers, stable infections, a chance to speak to a relative on the phone, and whatever cause célèbre we might have. We celebrate the freedoms we have. To all the families in the hospital and not, Happy Fourth of July.

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Hospital Sweet Hospital

Gracie’s no-antibiotic streak ended this week, and boy did she go out with a bang. She made it over eight months – all the way from October 17 of last year. But now, she has a kidney infection and cellulitis in her knee and isn’t responding well to the big gun IV meds. Turns out she’s still resistant to antibiotics.

Now that your curiosity is piqued, I suppose I’ll get to the story.

On Monday, Grace had an appointment with the low-vision specialist. It went pretty well. Gracie’s functional vision is roughly the same as it was last year or possibly better, so that’s great news, especially since we expected it to be considerably worse. Perhaps when it’s seemed she can’t see things it’s just that we’re noticing what was always there. Because the doctor appointment took a while and was across town from our house, I decided to skip the daycare-then-0ffice commute and work from home the rest of the day. During the day, Gracie was acting, for the most part, completely normal. The qualifier is that twice during the day she said her back hurt, but she was wearing a pretty dress with a knot in the back, and it seemed the dress could have been causing her discomfort. I changed her into more comfortable clothes and checked her spine and thought little of it.

Later that night, after dinner, I took the dogs for a walk. When I returned, Gracie was crying about the pain in her knee. When a kid who can jump up and down on her knees says they hurt, you pay attention. She rarely feels any pain, and to be crying about something hurting means it’s a serious hurt. I pulled up her pant legs and looked at her knees. Her left knee was red and hot, suspiciously like cellulitis, but she also had three pimple-like lumps that could have been bug bites. I debated whether to take her to the ER, but decided instead to give her Benadryl and see what happened to the redness. (Gracie reacts very strongly to every bug bite – a little mosquito bite will cause a huge hard red lump, for example.) I gave her tylenol for the pain at 7:40 pm and gave her Benadryl about an hour later, right when I was putting the kids to bed.

Gracie fell asleep right away, thanks to the Benadryl and a full day, but when I tried to carry her into her own room, she felt a little warm. She started moaning and writhing in her sleep, as though she couldn’t get comfortable. She has done this before – these are called rigors and they are a body’s reaction to a steeply climbing fever. The body can’t compensate for the temperature change and so it begins shaking. When the fever spike is complete, the shaking stops. Of course, then there’s a high fever…

I took her temp, and it was in the 99s. She broke through the tylenol. Normal for her is 97.3, so anything in the 99s is cause for concern for me. I kept checking her temp every 15 minutes or so and every time I checked it was higher. When it reached 100.5, I bundled her up and took her to the ER. Her temp was 102.4 when we got there.

The doctor at the ER is someone we’ve seen before. He is kind, smart, and thorough. He remembered us too, which is always great at an ER. I gave him the night’s history and he checked out the knee, and ordered blood work, x-rays, and a joint puncture. Everything was normal. However, he also requested a urine sample, and sure enough she had a bladder infection. The doctor was pleased to have found the source of the fever. He gave her a dose of IV antibiotics and sent us home with a prescription for orals and directions to visit ortho in the morning to check on the knee. Although the knee was nagging at the back of my mind, it was 3 am by that time and sleep was more of a priority.

The next morning we went to ortho. We saw a doctor we’ve never seen before but it was in the practice that has been enormously helpful for Gracie. This doc, too, was amazing. She was thorough and very nice. She drew an outline around the redness, told me to give Gracie some more Benadryl and see what happened, and worked out a plan for contacting a new ID doc that Gracie’s regular ortho had already recommended. She spent over an hour with us, and we had a plan when we left – try the Benadryl, contact her in the morning, and get the prescription filled.

Gracie spent the whole day Tuesday laying around, either on the couch or in bed. She slept hard for a few hours in the afternoon and had no trouble getting back to sleep that night. The next morning, she was almost herself again – walking with no problem, cheerful, alert – for about a half hour. After that she lost all energy and started to spike another fever. I gave her ibuprofen at 9:45 am and drew another outline around the redness on her knee – it had expanded significantly. I called ortho and left a message that although she was acting more like herself the redness had expanded. The doctor called back after a couple hours, displeased that the redness had not shrunk back with the antibiotics. She wanted to talk to Gracie’s regular ortho and call back. Around 1:15, her scheduling person called to set up an ultrasound of the knee. By this time, Gracie had started shaking with rigors again, and I told the person on the phone that it seemed like she just needed to be admitted. The scheduler said they wanted to ultrasound the knee to see if the fevers were from that or if she needed to be seen by a different specialist and told me to bring an overnight bag.

I decided not to medicate Gracie before the ultrasound – I wanted the doctors to see what I saw, to see her at her worst. Was it the right decision? I don’t know. She was shaking through the entire ultrasound and the doctor who read the films was appalled about the level of redness. The tech told us to wait in the lobby because the ortho doc wanted to call us. The ultrasound hadn’t shown any abscess and it didn’t look like the infection was in the joint, but that was small reassurance with the knee – half the leg, by this time – so red and swollen. Before long, the scheduler told us to go to the ER and the ortho was on the phone with the ER doc.

When we got to the ER, Gracie’s temp was 105. Poor kid! I would have given her something if I’d known it would get that high. Not exactly feeling like Parent of the Year there! The ER doc told us within the first few minutes of our arrival that Grace would be admitted. I thanked her – when you go to the ER, you don’t know what the doctor will decide. You don’t have a preexisting relationship that you can rely on to plead your case. I was not sure if I would have to fight to get Gracie admitted. It was nice to have that news right away.

So, today, it’s Thursday. Gracie’s leg looked better first thing this morning, but by around 11 am the redness had again extended past the Sharpie outlines. Nearly her whole lower leg and about a third of the way up her thigh are red and hot now. She is on the “big gun” antibiotics – daptomycin – it is a broad spectrum antibiotic that will actively kill bacteria (most just stop more bacteria from growing) and it’s one of the most powerful drugs in the arsenal. She should have shown improvement today, but she didn’t – she got worse. She is still resistant to antibiotics. Eight months off was not enough.

There are lots of big scary things that could happen if the antibiotics do not work, and I don’t even want to write the words because they’re too awful. And I’m just thinking about her leg, here – I haven’t even allowed my imagination to wonder what will happen if they don’t get the kidney infection under control. Shudder…

If you are the praying type, please say some prayers for my sweet girl. She continues to be funny, sweet, and just plain beautiful through this all. She is the embodiment of Grace, and she is amazing. Please get better, little Gracie.

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Packing

We are going on a short trip this weekend, and I spent last night packing. I was once again reminded that packing for a trip with Gracie is considerably different than packing for anyone else. Packing for Gracie means transporting a small urgent care. You never know what she might need, and it’s far better to be prepared for the worst and need none of it than not to have crucial supplies. Remembering past trips, she has had a sprained wrist, bitten her finger to the bone, gotten rug burn over the entire front of her body from sliding down carpeted stairs, spiked fevers every time the tylenol/advil wore off from a nasty infection, and of course had numerous injuries that were less dramatic.

This time, I packed a large assortment of wound care supplies, partly to take care of the wounds she already has and partly to be prepared for any other possible wound. Lately she has been scratching herself, and of course since she’s Gracie she scratches the skin right off without batting an eye. I’ve had to cover the scratched areas with bandages to keep her from getting to them. So we have all the bandaging stuff for those scratches, plus everything else we may use.

I also packed a few ace bandages in various sizes. These come in handy for multiple purposes — not only are they great for sprains and fractures, they also work well to cover areas prone to infection like hands and fingers. And, of course, where there are ace bandages there must also be tape — lots and lots of tape, because she is a little Houdini when it comes to getting out of bandages. She doesn’t even try but they seem to simply fall off her.

And, just because you never know, I also packed the advil and tylenol and a couple medicine syringes. I doubt we’ll need these but it’s far better to have them and not need them than to try to find an open store late at night in small town America. I thought about taking the benadryl but decided to leave it at home and just brought the topical benadryl gel instead.

Then, of course, I had to bring plenty of diapers and wipes and also about a million changes of pants. Gracie goes through about three pair of pants per day, on average, because she will go from completely dry to completely soaked in a matter of minutes. You never know when the soaking will occur, and there’s no avoiding it. Even if I changed her every hour, she would still wet through her pants because she stays dry until she’s completely full of pee and then everything gets wet. The diapers and laundry and floor cleaning are a hidden cost of parenting a special needs kid.

Finally, I packed her gloves. I imagine she’ll spend a lot of time outside while we’re on vacation and she needs to have her hands protected. I need to remember her cooling vest too so she doesn’t overheat outside, but that has to be packed at the last minute so the ice will stay frozen. It’s on my list of things not to forget.

Packing for Jackson and me was much different. I grabbed our clothes and toiletries and we were done. I also had to pack some wraps and splints for my leg (turns out it’s a tibial stress fracture causing all that pain), just in case we want to hike or something. Still, it was pretty easy to pack for us. And hey, if either of us gets a wound or something, we are well prepared. We have a small urgent care in Gracie’s luggage.

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Summertime

And the living is easy…

Ah, summer bliss.

The frenetic pace of the last few months has melted away in the warm summer. Lazy days are here.

The kids are getting the full glory of summertime. They can sleep in every day (not that they do — Gracie refuses; she prefers to wake up with the birds). They get lots of time outside, swinging and running around the backyard and playing in the sandbox and eating popsicles and doing all those other things kids love to do in summer. They are spending tons of time together, just like siblings should.

Our new daycare is working out really well. The kids love going there. They get to play with the bunnies, play on the playground outside, and play with other kids. Yet another little girl has fallen in love with Jackson, and the two of them cuddle under T’s bemused and watchful eye. The experience of watching Gracie has been eye-opening for her; she asked Chad the other day, “how many times has she split her head open?” (The answer is none and I’d really like to keep it that way, thankyouverymuch karma gods.) In this short time T has for sure noticed how hard Gracie is on her body — how hard she bangs her head, how hard she lands on her knees or hands, how hard she bites, etc.

Seeing T’s reaction to the way Gracie treats her body reminds me how bizarre this life is. As Gracie’s mom, I am used to watching her throw her whole body weight on her knees. (Not that I like it! I flinch every time.) I am used to looking for injuries, recognizing the signs of overheating, changing soaking wet diapers, dealing with chronic diarrhea, and all the other stuff that’s part of being Gracie’s mama. It doesn’t seem unusual to me — until I look at her through someone else’s eyes. Then I see the big girl who is so smart and eloquent but can’t feel when it’s time to go potty. I see the very active child with the somewhat strange gait and terrible balance who can turn her ankle around and keep walking. I see the beautiful girl who wants to look pretty and yet bites her fingertips off.

But those things only tell part of the story. I also see the brilliant child who lights up every room she enters. I see the kid who makes everyone fall in love with her, the little girl with the twinkly eyes and the sparkling smile. I see the friendly kid who loves to play with other children. I see the amazing girl who overcomes every obstacle with grace and determination.

The living is easy.

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Perspective

A few weeks ago, I hurt my leg while running. After a couple visits to a physical therapist, he told me he didn’t want to see me again until I got x-rays, and also to stop on the way home to get some crutches so I could try not bearing weight on my leg for a week to see if that would help. I’m about four days into not bearing weight on my leg. It’s going okay; I am grateful to have the crutches when my leg’s hurting but they really cramp my style. And, because I was walking on my leg for a few weeks before trying this whole non-weightbearing thing, it’s sometimes hard for me to justify the crutches — it’s so much easier to just limp across the room than to try to juggle holding, well, anything while using the crutches. And when something urgent happens, like when Gracie said “Mom, I didn’t mean to bite my finger” while holding up a bloody digit, it’s more important to me to get her cleaned and bandaged than to deal with the crutches.

I’ve never had a major lower extremity injury before. I’ve broken some toes (one toe twice, to be precise) but never hurt anything that made it terribly hard to bear weight. I’ve never had to use crutches, or a cane, or a walker, or a wheelchair, or any other assistive device. It’s been a bit eye-opening. First of all, I realized just how narrow the walkways in my house really are, and just how nice it is to find a wide hallway. Second, I realized why it was such a big deal when Gracie learned to walk on uneven surfaces. I knew it was cool when Gracie first did it but never realized how very hard it is to walk on something not smooth when you’re not entirely sure of your balance. Third, I found out that crutches and water really do not mix. It made me wonder if Gracie’s walker is harder to use when there’s water on the ground. At least it doesn’t slip out from under her and make her step hard on her sore leg…

There have been other things I’ve discovered, too, like just how annoying it is to open a heavy door while trying to balance on crutches without totally killing your leg. Those automatic door openers are awesome! Suddenly I wish they were on every door. It makes me think how it would be that much harder for someone in a wheelchair. How do they even do it?? How do you maneuver your chair while pushing a heavy door, then quickly get inside before it closes? It must be so frustrating.

I know that what I’m going through is NOTHING compared to someone with a permanent, life-long disability who needs to use an assistive device just to get around. My injury is short-term — hopefully I’ll even be able to run again very soon (getting a little stir crazy here!). But this has been eye-opening. There are things we take for granted — being able to stand up, walk around, hold stuff while we’re walking, etc. — that people like Gracie will never be able to do so easily. Even though Gracie gets stronger every day and is really doing great, she has to concentrate very hard at keeping her balance when she walks. Carrying things, even small things like dolls or books, makes it very hard for her. When she uses her walker, she can put things into her basket (that was a moment of inspiration on Chad’s part — we attached a bicycle basket to the side of her walker so she can tote her stuff). However, she is limited to whatever fits in the basket. It’s not like she could carry an armload of books or a sheaf of papers.

My time not bearing weight will (hopefully) be over soon. Even if it takes a few weeks for my leg to heal, it will be temporary. I will probably still be able to run that 10K in the fall. I will be able to carry my 40-lb girl around soon. I will soon be able to open doors, walk through tight hallways, and run on the grass. I will be able to forget the many day-to-day inconveniences that people with disabilities face every single day. But hopefully I won’t forget how frustrating it felt to try to navigate a world without the full use of my body. Gracie navigates this world for able-bodied people every day, and she does it so gracefully. It’s part of her amazingness.

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