October 2008 Archives

Good news first: Brandie spoke with the doctor this morning and learned that the MRI and LP results are normal. There are still some additional tests to run which will take another 2-3 weeks, but they're just to help identify which kind of epilepsy she has (as opposed to looking for some more harmful cause to her seizures).

The bad news: the anticonvulsant isn't having much of an effect yet so Josie is still experiencing around 30 seizures per day. Two days ago she collapsed against our bed frame and got a nasty scratch across her cheek (think Inigo Montoya from Princess Bride), and yesterday she fell onto the deck stair, split her lip and got a bloody nose. The medicine is also making her more irritable and at times hyperactive, which doesn't help us prevent further injuries.

The doctor is increasing her dosage and we're due to talk to him again in another week.

Oh, the glorious day has finally arrived!

After daily inspections of her skin and questioning regarding scratches, scabs and specks of dirt, I was able to confirm that Sophie does indeed have a mole. Two moles in fact. It was a wonderful celebration here at the Ranch. She did a dance and sang "Yahoo, I have a mo-ole, I have a mo-ole!", we took pictures and she showed them off to Josie who, although 16 months younger than Sophie, already has a mole or two.

I'm afraid that with all of the recent hospital time and general freaking out about her younger sister, she was feeling a little neglected. Well, I can tell you right now, this MORE than made up for it. Something small, but wonderful, to celebrate.

We are now home and all (myself temporarily excluded) safely tucked into bed and duly zonked after a pretty rough day at the hospital. We don't have any results back yet other than the obvious one that Josie is one tough little girl: her post-op screams of rage are probably still echoing through the halls of Ward 19, and I'm sure there are at least one or two hospital staff members who are treating themselves to a stiff after-work cocktail tonight.

We started off well enough, arriving at the hospital shortly before noon to find out Josie was scheduled to enter the MRI theatre at 2:30pm. We had been told she needed to be ready as early as noon, so she hadn't had anything to eat but Jello since the night before and nothing to drink past 10am. We visited the toy area, read some books and eventually settled in for a nap just as the hospital staff decided to clean the shared (but temporarily and tantalizingly quiet and empty) room. After an almost-comical (I'm sure I'll find the humor in it someday) amount of noise later, she fell asleep and rested until more new roommates woke her up shortly before 2:30pm.

Perfect timing! Except they still weren't ready to receive her in the MRI theatre: shortly before 3 we were informed they wouldn't be ready for her until 4pm, at which point we would walk upstairs with our nurse. By ten minutes after 4 our nurse had gone into hiding and wasn't going to risk us seeing her until the MRI folks paged us. The short(er) version of the story, Josie wasn't admitted until nearly 5pm, which means she could have eaten a decent breakfast and a snack and had fluids (which were somehow critically important only after the lumbar puncture, inspiring one hapless doctor to chastise Brandie for not forcing Josie to drink during the hour-long scream-fest that accompanied her coming off the anesthetic, but we were told repeatedly prior to the procedure that she was fine to go without all day) up until 3pm.

After the procedure, we were told that another blood test was required within half an hour (why this wasn't just performed while she was still under the anesthesia I have no idea, but am still marveling at the absurdity of it) to go along with the lumber puncture samples: anyone who has helped a toddler come off general anesthetic knows the first hour or so is going to be pretty gruesome, and Josie did not disappoint! Brandie will have to tell the full story of the final blood-drawing because I was off picking Sophie up from the Abbot's (where she is now an honorary family-member) and missed the opportunity to experience it first-hand. Suffice it to say Brandie & our nurse Rachel (whom I hope is enjoying a nice martini right now) both bonded over the ordeal, and Josie will never marry a doctor.

Our primary doctor visited us after the procedure (which was an unexpected surprise, previously we were only able to get face-time with him during his morning rounds at the hospital) and let us know he would be able to contact us via phone (as opposed to us having to spend more mornings at the hospital just to see him) to discuss the results of today's tests. We would also discuss the dosage of Josie's anticonvulsant on Friday, and possibly increase it if she was still having seizures at the current rate (still around 30+ per day.)

Thanks again to Caroline and her awesome family for giving Sophie another break from the hospital, and to Sarah and Lisa for making us two more fantastic dinners: I'd almost be willing to go through a day like this again, for a reward like that (emphasis on 'almost')! Sophie fell asleep in the car on the ride home from the hospital, but Josie stayed up extra-late to have some Jello, juice and pretty much anything else she wanted (cheese puffs, hummus and carrots, banana, fudge from Nadine) while Mom & Dad ate their dinners. I think she deserved it!

Brandie & I both want to say thanks to everyone for all the well-wishes, cooked meals, flowers, cards, kindness and support we've received in the past week or so: it means the world to both of us!

We're heading back to hospital today for the MRI and LP (lumbar puncture).  Josie will be put under general anesthesia for these procedures.  Thankfully they are both being done at the same time so she will only have to go under once rather than two separate times.  After today, we'll hopefully get some answers about what is causing the epilepsy.

We're hoping that it's a speedy day at the hospital and that they don't discover something else that keeps us at the hospital for another week.

After a long week at the hospital, we were finally discharged (officially) and are settling in to our new routine here at the house. Based on the EEG results Josie was officially diagnosed with epilepsy. There are lots of variations and we aren't sure just which type she has yet however, they've started her on anticonvulsant medication today. They (and we) hope to see some results within 2-3 weeks.

Her episodes have been increasing in frequency, between 30 and 50 a day now, each lasting only 1-3 seconds but it feels like a lifetime. Each time we see her have one then smile up at us it just breaks our hearts and makes us feel totally helpless. Again, she's oblivious to them happening. Just today she was talking to me, paused, had a seizure, then finished her sentence as though nothing had happened.

She's still got to endure more testing in hopes to find out what is causing the epilepsy as well as drill down on which drug(s) will be most effective for her. She needs to have an MRI, and spinal fluid extracted for testing next Tuesday and will be under general anesthetic so please send her your good thoughts. She's a trooper but is learning to hate nurses and band aids. Sophie is no fan of these tests either as she's been by Josie's side almost non stop through this whole week. During one dramatic blood extraction during which some intern was doing the poking, Sophie looked up at me and said "We better tell Dad all about this".

I never imagined what it would be like to spend time in the Children's Ward of a hospital. It was heartachingly sad but I can tell you that there were so many kind people who poured their hearts into their jobs. They actually have a "toy nurse" whose job it is to bring in fun toys to distract the kids while they are having tests done. Josie enjoyed making a mess of the floor, table and nurses hair with a Buzz Lightyear bubble blower while getting her blood drawn. Yesterday two puppies were brought into the ward so the kids could pet them and hold them. And much to our roommate's excitement, two members of the Wellington Lions stopped by today to autograph posters and pose for pictures.

Thanks to everyone for your thoughts, prayers, well wishes, meals, babysitting and shoulders to cry on. We're lucky to have such great family and friends both near and far. And for those of you far away, feeling helpless, I am sending you a virtual pile of laundry to wash and fold.  We love and miss you all.

Apologies for the delay in updates: Josie was admitted to the hospital early Monday afternoon due to the dizzy/fainting spells that she's been having. These started about a week ago and have been increasing in frequency to where they occur several times a day. Her eyes will glaze over and often times her head will snap back or she will fall over but recover immediately and seem to have no knowledge of what just happened (unless of course she hurt herself by falling into something.)

We at first thought she was just getting her balance back after having the grommets done, but decided to take her in to our family doctor after witnessing several of her spells over the weekend. She stayed at the hospital Monday and Tuesday nights and had both an EKG and and EEG done (the results of which could take anywhere from a day to a week to get back.) They want to rule out any type of heart condition and the most recent thought was absence seizures (childhood absence epilepsy) but the EEG will let us know more. The doctor wanted us to stay another night so that we would be available to him at his morning rounds, but we have been doing all of the "episode" monitoring and documentation ourselves so we decided to come home and return to the hospital in the morning to see him.

She is in great spirits (outside of any testing or sleep-deprivation the hospital causes) and Sophie has been a wonderful big sister, having helped her through multiple blood tests, blood pressure readings, and over 50 some chest and head (35 for the EEG) stickies being attached and ripped off.

We'll keep you all posted as more news is available: thanks to our friends Matt & Jane for all the help (watching Sophie, cooking meals, general support) they've given us while on their vacation to New Zealand! I'm sure that wasn't in the travel brochure.

This morning we got dressed in the nicest clothes we brought with us (thanks Aunt Sarah for the girls' dresses!) and with some help from my step-brother Daniel were able to "virtually attend" Lauren & Drew's wedding in upstate NY.  We had a great view from the back next to the string quartet and could hear the entire ceremony (and the quartet, which sounded great!) We chatted with our family and raised a glass to toast their happiness - all from the comforts of our home here in New Zealand.

It was the next best thing to being there, thanks Daniel and congratulations to the bride and groom - we love you guys and wish you all the best!

This afternoon we met some friends at Frank Kitts Park (home to the Slide of Terror) in downtown Wellington and let the girls take their first bungy ride. New Zealand is very big on adventure tourism, so I knew it had to happen someday.

It was quite a thrill for both of them, so I imagine it'll be on our to-do list again in the near future. Surprisingly, Sophie was momentarily scared at the lower height (10-15') but had a blast at the highest levels (25'-30'?).

Unsurprisingly, Josie the adrenaline-junky loved it all. She's been in great spirits since she left the hospital and really seems to be hearing a lot better. Sophie was even overheard saying (while they were playing together in another room), "Josie, you can hear me!"

Sophie's Big Air
Josie's Big Air

Early yesterday morning Jake and I took Josie to the hospital to have bilateral grommet (tube) insertions and an adenoidectomy.  She's suffered some hearing loss due to what they diagnose here as "glue ear" which basically means that she has fluid behind her ear that won't drain and the eardrum can't vibrate to allow lower level sounds to process.  She's also suffered from febrile seizures several times and always when she was having double ear infections.  And even though her middle name is Grace, she's suffered enough goose eggs to cancel any hope of living up to that name.

The surgery went great and the staff and hospital was very nice.  She had a hard time coming off the anesthesia and just wanted to go home and kept crying for Moon Dog, our car.  They had us hang around for 2 hours after she came out of the OR in order to make sure she wasn't going to have any bleeding from the adenoids being taken out. This two hours consisted of her attempting to and almost succeeding to rip her IV plug out, screaming, crying and thrashing around.  The second we walked out of the hospital she started smiling and hasn't been upset since.  

We've already noticed her hearing things that she wasn't able to hear before the surgery.  She speaks at a lower volume however, her Darth Vader breathing and snoring seemed to have increased in intensity.  I guess this is normal due to the inflammation from the adenoidectomy.  We're so happy that she's able to hear again!

A big thanks to Nadine for coming over at (gulp) 6 am on her day off to give Sophie a fun morning.  Also thanks to Lisa and Joanne for bringing over some super fun flowers, cards and bubbles.  Josie was so excited to see them when she woke up!  Thanks to our long distance family and friends for all of their thoughts and advice.  We love you all and are so blessed to have such great people in our lives.  

The girls and I met up with some other Mums and their little one's for a fun morning over at Days Bay.  We started pretty early by catching the 8:45 am East by West ferry from Queens Wharf.  It was a small ferry and we had it pretty much to ourselves at that early hour.  It only took about 20 minutes to get over the bay and we docked right as the clouds burned off.  We were greeted by a local unofficial tour guide who instructed us to go to the duck pond, then took the kids by the hand and walked us over himself.  He was a friendly resident who just happened to be seeing his daughter off on the ferry.  He gave us some interesting info, however, we couldn't drag the location of the playground out of him.

We walked to the nearby village of Eastbourne and found another mum who pointed us in the right direction.  The playground was wonderful and we all enjoyed the crazy high slides, roktopus, and various wooden structures near the beach.  We headed back over to the pier and caught the 12:40 ferry back.  We sat on the open upper deck for the return trip and got some great views of Wellington and the other cities on the edge of the water.  

It was an amazing day trip and we can't wait to do it again when Jake can come with us, or hey, maybe just a mom's afternoon out so we could explore all of the boutique shops and yummy looking bakeries and cafes!  Oh to dream!  :) 

This is the typical amount of stuffed animals that Josie likes to bring in and out of bed with her. She's a big fan of all of them, and will specifically ask for any that are missing at bedtime. In the morning, after she's decided she's ready to get out of her crib (unlike her sister, she's usually content to lay in there for a while before she announces at the top of her lungs: "MOM-MY! DAD-DY! I READY TO GET O-UT!"), she gathers all of them (which can take several minutes, and can put your back out trying to pick her and them all up because of the odd weight distribution) and carries them around with her (often looking like Gus-Gus from Cinderella, repeatedly dropping and picking them up due to the overload).

From what I can tell, in this picture are Cocoa Bear, Koala Bear, Minnie Mouse, Bullseye and Puppy. Oh and Josie's enormous, quite-pleased-with-herself grin - some things never change.