Life has taken an unexpected and difficult turn for us, and although we may not have been in contact with you over the last few months, it doesn't mean that we haven't been thinking of you. We have. It's just that we've been very preoccupied, particularly with Jordan and her health problems. We don't know where this journey will end right now, but her condition is very serious, and life around here just isn't the same. I have taken a leave of absence from Landau Associates to care for Jordan (and Avery, of course), and Devon is able to help out alot while working from our home. Of course that means working a modified schedule for ENVIRON, as our doctor and hospital visits seems to eat up many days (i.e. he is frequently burning the midnight, weekend, and early morning oil to keep going). So, we plug along, and take the good days with the bad, as we adapt to our new, unexpected life. All in all the tenor of the household is one of sadness, anxiety, and frustration. We just don't know what to expect over the next few months or years, and for us, it's almost unbearable. We don't know how or what to plan for. So, please know that we are thinking of you and wish that we were better at staying connected right now, but we are just preoccupied on the home front. Below you will find a link to our website, highlighting some of the happier times we've had over the last 7 months.
Oh, where to start. All of our friends and family are at different levels of info right now. So, I guess I will start at the beginning. But, what is the beginning? Okay, how about the beginning of 2006:
On 2 January, Devon, Leslie, & Avery welcomed home our sweet little Jordan Emily. She was born on 30 December 2005 -- our 5th wedding anniversary. We were thrilled that 2-year-old Avery was so accepting, kind, and gentle with the new addition ("sissy Joey"). Life was hectic, being the holidays and all, then throw in Avery's birthday on 22 December, and Jordan's birth on 30 December, and phew, we were glad to be starting fresh with a new year.
Devon and I had joked before Jordan was born that we were going to be in for a rough ride with Rowelette #2, because we both thought that Avery had been such a goodsleeping, easygoing, healthy, happy baby. But from the beginning we knew something wasn't quite right. Jordan was actually MORE mellow than Avery, and didn't even cry until she was 4 weeks old. The girls' pediatrician suggested, as did others, that we should relish the peace and quiet with this newborn, but it just made me worry. I wanted my daughter to tell me when something wasn't right in her world; her diaper needed changed, or she was hungry or lonely.
After 6 weeks, and about 8 trips to the pediatrician, we all concurred that something was different about our little "Joey" (that nickname still lingers, although Avery has dropped it completely now).
Fast forward 7 months (today, in fact, 30 July), and this is what we know about what makes Jordan different. Nothing! Yep! Well, that's not entirely true, we know that she has microcephaly (a small brain, that thankfully is growing, but not at a normal rate), cortical vision impairment or blindness, and that she has infantile spasms, a serious & damaging type of seizure that we thought was a startle reaction because her's are so hard to identify unless specifically trained. However, we do not know WHY she has microcephaly, CVI, or infantile spasms. We also know what she DOESN'T have -- for the most part. She doesn't seem to have a metabolic disease (which was a major suspect for a couple of months, there are hundreds of them, almost all of which are fatal within 2 years). She didn't have an infection in utero. She doesn't seem to have a recessively inherited chromosomal disorder. So, we're still looking for the answer to this $64,000 question (although it'll probably cost more like $640,000+ by the time we figure it out).
Jordan's seen 3 pediatricians, 2 pediatric neurologists, 2 geneticists, an opthamologist, and a gastroenterologist in the Portland area, and in Seattle at the UW Medical Clinic/School. Some of the doctors were great, others were horrible (at least their bedside manners, anyway). She's been to the emergency room once, admitted to the hospital 3 times, had 2 brain MRIs (under general anesthetic), had a feeding tube placed, first through her nose for 2 weeks, then permanently installed in her stomach (she's now graduated from a PEG tube to a slick Mic-Key button, and been under IV sedation twice for those procedures). She's had 3 xray sessions, on her skull, lungs, and even her shoulder. She's had one standard EEG and one 24-hour video EEG (another night in the hospital, possibly the most boring video produced, ever). She's had a skin biopsy, and more blood, urine, and poop collected than I can remember. She has been poked so many times she doesn't even seem to notice it now.
So, what are we doing now you ask? Well, we still go to lots of doctor appointments, we're anxiously awaiting more test results (from Seattle and Portland docs), and Jordan will have another standard EEG on Tuesday, 1 August to see how she is doing on her anti-seizure meds. I've been giving her injections of ACTH (a synthetic steroid-like hormone) for 2.5 weeks to try to control/reverse the IS. If it seems to be making a difference (as seen on the EEG), we'll continue with it. If not, we'll move onto another drug. . . . Luckily she's tolerating the shots well (with the 21 gauge "horse needle"), and hasn't had the side-effects expected with steroids (puffy face & excessive weight gain, extreme fussiness, high blood pressure, etc.). She takes Zantac (through her tube) 3 times a day to help control some serious reflux that leads to barfing festivals (I was doing up to 5 loads of laundry a day during April & May, and even a small cold can be devastating). She has to have her blood pressure monitored at least twice a week and blood, urine, and poop tested once week (more trips to the peds floor & laboratory at the local hospital). She goes to physical therapy every other week -- we're trying to get her to hold her head up, and she's getting much better. We also have this great team that work with her at feeding clinic (1 private hour with a team of experts: a physiatrist, an occupational therapist, a speech therapist, and a dietician, dedicated to keep her eating). Can you guess that we maxed out our insurance in May?! That's a good thing, with our insurance, because now they pay at 100% instead of 90%.
The good things: We think that she is starting to see a little better. We think that the ACTH is helping to reduce the strength and frequency of her seizures. And I know that she's back to nursing -- after a 3.5 month hiatus, although this is purely recreational, because she is not good enough at it to fully nourish herself this way. (How you wonder? Well, Jersey cow that I am, I've been pumping breastmilk since mid-March, when we switched to a bottle for a couple of weeks, then to a feeding tube. Apparently I could set records with my pumping, at 40 to 45 ounces per day. This also means that we're accruing a huge surplus of breastmilk, as her diet has only required 24 to 30 ounces per day. Our new freezer is almost full. . . .) And, as I mentioned above, she seems to be getting stronger & holding her head up better.
So what is Jordan like? Well, in many ways she is like an 18 pound newborn. Her smiles are accidental, few and far between. She can't quite hold up her head yet, or roll over, or sit up, but we're working on all of those things at physical therapy and at home each day. She's a sweet, mellow, beautiful girl. She doesn't fuss or cry too much, sleeps through the night now (finally, for the last month), and has beautiful blue eyes with long eyelashes (everyone notices, they are unusually long, in a good way). She loves to be held, and isn't too picky about who is holding her. Even though she has difficulty swallowing, she still loves to suck -- mostly on thumbs and knuckles (but not her own, yet). She's an angel!
Maybe most notably, Jordan has the love of family and friends, near and far. Nana Noma (my mom) retired last year and moved to Vancouver to be closer to her grandchildren. Now she sees them just about every day, helping out all time. She and Avery have their own events and routines & we're unbelievably greatful to have her help! And, Grandpa Earl & Grandma Linda (Devon's parents) are moving closer, too! They're leaving Fort Erie, Ontario for their new home in Hope, BC in mid-August. We can't wait to have them closer, and are thankful for all the time they've been able to come and see us and help out over the last few months. And Grandpa Gary (my dad) was able to come for a visit in April & managed to put the new play structure together in the back yard, without any directions! We want to thank all our friends and family, near and far, that keep us in their thoughts & prayers.
(photo by Kelly Wood)
Now, for some of the things we do that don't involve going to the doctor or the hospital, check out our website at:
http://home.comcast.net/~devon.rowe/
Come back again soon as I get into the rhythm of blogging.
