Andi’s exciting life.

OK, so maybe I overreacted a tad with my last post assuming that Adelaide’s days were numbered. I freaked out when her condition started deteriorating again, but after increasing her steroids again, she is doing well. She is back to having a ridiculous appetite, but we’ll taper her again in a couple weeks. Her disease is strange and variable, so we never know what to expect, but she seems out of the woods again for now.

For those of you who don’t know the story, Matt was hit by a car while riding his bike to the train station on 9/30. The driver didn’t see him and made a quick right turn, taking my poor husband out in the process. I got a very scary call on my way to Falco’s school from a stranger calling from Matt’s cell phone. He said that Matt was in an accident and asked him to call me to let me know. The stranger, Tom, said that he was OK but confused, and an ambulance was on the way. Matt does not remember Tom or asking him to call me, but I’m so glad he did. I dropped Falco at school and met Matt at the emergency room. His poor head was banged up, but he was awake and oriented.

Turns out he was scraped and bruised all over and had facial fractures. He was wearing his helmet, which definitely protected him from worse head trauma, but his poor face still hit the asphalt. He needed a laceration repair on his eyebrow and ultimately surgery to correct his fracture. There are many stories about his time in the ER and rechecks and day of surgery that are outdated and unpleasant, so suffice it to say that he is recovering and doing well, all things considering.

You may remember that we have a child, Falco, who I used to tell you about, post cute photos of, etc. I will be sure to write my next post soon about how hilarious, adorable, and brilliant he is. Stay tuned.

Matt came home yesterday evening after his surgery, and he is doing well. I will get to whole the story of his accident soon, though it’s pretty old news by now. The good news is his injuries were fixable, and he is on the mend. He isn’t feeling great and still has to heal from his surgery, but hopefully the worst is behind him.

As if this wasn’t enough, I took Adelaide to the vet on Monday because she seemed a little off to me. She wasn’t exactly off balance or anything I could put my finger on, but she was acting sluggish and not herself. She passed her neurological tests, and the vets said they couldn’t see any abnormalities. She still didn’t seem quite right to me, but I assumed I was just being paranoid. Unfortunately, after another day of seeming quiet and lethargic, she had a seizure tonight. We have been tapering her meds, so it seems that her symptoms are returning at this lower dose of steroids and seizure drugs. So, it’s back to the doctor with her to see where to go from here.

We knew her disease had a grave prognosis, but her recovery was so dramatic that I was starting to think it was all a mistake and she was cured. I guess that’s what steroids can do for you. She can’t stay on high doses of steroids forever though because they are too hard on her body, so it’s unclear what the plan will be from here. At least we were expecting this and knew she may not have much time left. She has had a pretty good couple of months at home with us, and we won’t let her condition become nearly as bad as it did when this all started. I don’t mean to be too morbid, but realistically, we likely have some sad times and tough decisions ahead.

I have been so busy living my life the past couple weeks that I haven’t had time to write about it, but I’m going to catch you up. Adelaide has already been home for three weeks now, and she is doing pretty well. She has some side effects from the steroids and seizure meds, but she is mostly herself. She started on a chemo drug called Ara-C that has been shown in clinical studies to significantly improve the lifespan of GME patients, so hopefully that will be successful. It is injectable, so I have to give her shots at home twice a day, four days per month. Now that this treatment has started, we will start to taper her other meds next week. I’m nervous about that because there is a risk of her getting worse again, but we’ll just have to see how it goes.

In other news, we took Falco to Seattle over Labor Day weekend to go to PAX. The only other time we have travelled with him was our trip to Mississippi when he was eight months old, so we were nervous, especially about the flights. Our worries were not completely unfounded, as you might expect, since we were going to be trapped on a plane with a very active 21-month-old. We got through it, but not without a lot of squirming and whining and seat kicking and crying about ear pain and squealing every time the PA system turned on, etc. We couldn’t really engage him in any activity; he wouldn’t sleep; and on the way home he got so frustrated that he started hitting us. We couldn’t do anything about it for fear of causing a meltdown, so we had to just take his bad behavior and all be miserable.

The good news is, when we were actually in Seattle, he did great. He slept well in the Pack and Play the hotel provided, and he was in a pretty good mood and excited to see new things. We couldn’t really do much of PAX because it was crowded and filled with a lot of stuff he wasn’t allowed to touch, so we spent a lot of time in the room. Overall, with the tortuous air travel, such a quick stay, and missing most of the conference, I don’t know that it was worth the trouble and expense. It was fun to go be with a bunch of fellow nerds for the weekend, but we were all happy to get home.

I don’t know when I have felt as lucky and happy as I did this evening. Matt and I took Falco to a cafe and then to Golden Gate playground before dinner, and we all had a lot of fun (especially Falco, who jumped in puddles and sand and got filthy). Adelaide is doing great; no one would know that she was in critical condition just two days ago. I am immensely happy to have my dog back, my kid is beyond adorable, and I have a fabulous husband. Today I felt like I couldn’t ask for more.

(OK, I could have asked Falco for a little less whining, but I think he is a really good kid by toddler standards.)

The first part of last night was a little rough. Adelaide was restless and not sleeping, and neither was I. She was in a soft crate next to our bed, and I kept getting up every 15 or 20 minutes to try to help her lie down and get comfortable. She looked worse than when we brought her home, and I was worried that we were going to have to take her back in before morning. At 2 a.m. she peed in her crate, but after I got her cleaned up and bedding change, she quieted down and we both slept until 6:00 or so.

I took her out this morning, and she peed outside. She was trying to take a few steps but couldn’t hold herself up without losing her balance, so I was basically holding up all her weight. She ate breakfast like a champ, in a lying position but without help. We left her in her crate to rest for an hour or so while we went to get breakfast, and when we got home she was trying to walk on her own! She needed someone there to catch her if she fell and was pretty wobbly, but getting around. A few hours later, she was trying to prance around and ate and drank while standing. At this rate, she could be back to herself in just a couple days!

We still don’t know her long-term prognosis, but for now we’re just happy about how well she is doing. Hopefully only good news will follow!

We are far from out of the woods, but we brought Adelaide home tonight. She improved significantly today and is now trying to stand on her own and very alert and responsive. All she needs now is supportive care and time to see if she continues to get better, so we are bringing her home at least for the weekend. We got home shortly ago, and she definitely seemed to recognize her surroundings. We had to keep her from trying to get up and walk because she is unsteady and falls over without support, but she definitely wanted to get up and around. She ate like a horse, probably both because she is hungry after what she has been through and because the steroids are increasing her appetite. We are hoping she will get good rest tonight and be even stronger tomorrow.

I expected it to be very sad to bring her home since she can’t walk, but it feels OK for now. She seems like herself, just sick, and I am optimistic that she will continue to improve. There are no guarantees that she will recover completely or for how long, but we’re taking it one step at a time and hoping for the best.

Sorry for my silence this week, but we have been facing a very serious and unexpected illness in our whippet, Adelaide. Sunday she had an episode of stumbling around for a few minutes in the evening but then recovered and seemed OK. It happened again the next morning, and we took her to her regular vet. They kept her for observation for the day and said she seemed normal but advised we see a specialist because of some abnormal blood work.

When we picked her up from their office Monday afternoon, she was walking but didn’t seem quite herself. By Tuesday morning, she could barely walk, and I had to carry her in to see the internist. They hospitalized her, and a spinal fluid analysis led to the diagnosis of steroid-responsive meningitis or granulometous meningioencephalomyelitis (GME). Wednesday morning, she had one seizure, which was an alarming sign of her condition worsening. She went on to have more seizures and had to be started on a constant infusion of valium by Wednesday afternoon.

She has now been on steroids for 24 hours, and her valium is being tapered off today. The hope is that she will respond to the steroid treatment, and we will see an improvement as she begins to wake up. There is concern that, even if she does improve on steroids, she has suffered brain damage and will not be herself again. The biggest worry is that she will not respond to treatment at all. Today is a day of waiting to hear from the doctor letting us know what happens when the sedative begins wearing off.

This is so painful and heartbreaking. She is only six years old, and this happened so fast that we barely had time to know something was wrong before she was hospitalized. I haven’t seen her since Tuesday morning, but I’m planning to go visit this afternoon while a friend watches Falco. He keeps calling Adelaide at home, and he can’t understand what is happening, which is probably for the best.

I will post an update here tonight or tomorrow when I get the next update.

1. Brie. I try to avoid it, but it’s so heavenly good, especially with No Knead Bread.
2. Wine. You mean this stuff has calories? And five ounces is a serving?
3. Super burritos. I do get “no cheese,” but it probably doesn’t counteract the guacamole and sour cream and carne asada.
4. Salmon. Yeah, I know it’s supposed to be the “good fat” and all, but not when you eat six to eight ounces at a time over a mound of rice on a weekly basis.
5. French fries. How can a vegetable be anything but good for me?

There are plenty of foods I avoid like real mayo or scones or premium ice cream or Snickers, but the foods in this list are staples that I don’t want to live without. Why must they be so delicious?

Just when I thought I couldn’t despise Rosco any more, this morning he crossed a line that should never be crossed. I was undertaking the lovely job of changing Falco’s dirty diaper, which has to be done on the floor now so that I can pin him down with my leg to inhibit him from leaving the scene or involving his hands. The offending diaper was off, and I set it down behind me while I cleaned him up and put on the clean one. I turn around to pick it up when the job is done, and there is Rosco, licking the dirty diaper. That’s right. My dog was eating human excrement. I was ready to throw him out on the street right then, even more so than after he has destroyed yet another of Falco’s toys. As far as I’m concerned, if you are eating human shit, you are not domesticated. Unfortunately, since he is nearly blind and deaf and dumb as a rock, I don’t think he could live off the land if I set him free to live like a wild animal.

ETA: Before anyone attacks me, this post was sarcastic if that wasn’t clear. Obviously I am not really going to let my 12-year-old shit tzu fend for himself on the streets. Sheesh.

It was a nice Thanksgiving at The Gleeson House and Falco’s first! I
started cooking about 7 a.m. while Matt took Falco to the playground
to keep him out of the kitchen. The new kitchen served me well and
was such a pleasure to cook and hang out in. Our friends Michael,
Lynne, James and Ruby came over for an early afternoon feast. Falco
didn’t like much besides the turkey, mac and cheese, and Lynne’s
sweet potatoes, but it was very fun to make him his own Thanksgiving
plate with lots of different foods to try. He was a good boy at the
table and had a nice time despite the fact that he has been
struggling with teething lately. After eating we broke out the
Guitar Hero (I) for some fun and embarrassment for all. Good times!

The cook.

GBD.

Ruby looking thrilled about her Thanksgiving Kraft single feast.

Falco ready for some turkey.

The guests.