Abnormally Normal

The year of finding our "new normal" has come and gone, and I feel it was a hard-fought success. I guess the best way to describe our lives, now, is "abnormally normal" -- a term we've heard many times describing Jordan's EEG over the last 2 years. But that's a different story.

In 2007 we somewhat abandoned the idea of finding a diagnosis for Jordan, and have settled on "metabolic disorder of unclear etiology." She does have other diagnoses, but these just describe the symptoms of the mystery that has taken over her brain. Those "symptoms" include:

• Lennox-Gastaut Syndrome (a severely debilitating seizure disorder, currently controlled with a combination of Keppra, Tranxene, and Depakene)
• Cerebral atrophy, microcephaly, brain malformations (small corpus callosum, delayed myelination, very small brain stem)
• Severe global developmental delays
• Profound dysphagia (difficulty swallowing, for nutrition only, though, she can swallow her saliva)
• Cortical Vision Impairment (eyes work, but brain doesn't seem to process vision correctly)
• Severe hypotonia (low muscle & body tone)
• Reactive airways disease
• Gastro-esophagal reflux disease
• Constipation secondary to severe hypotonia (but almost fully controlled with blenderized food instead of enteral formula)
• Ankle contractures (wears ankle-foot orthotics daily to prevent stiffening of her ankles)
  
• Hip Dysplasia (with major surgery scheduled for the end of February 2008)
  
• Scoliosis (eventual surgery & placement of rods to correct)
  

But, after the battle of a lifetime, the good news is that our family now has in-home nursing care to help care for Jordan. If not for a nursing shortage we would have a nurse 9 hours a day to help with her (right now we get 5 days a week). This has been amazing for all of us, Jordan in particular. Her care is so intensive that it's impossible for 2 adults to work, be parents, run a household, and survive without letting something slip, and often that was having to set Jordan down instead of continuing with her therapies throughout the day. But over the last 2 months, since nursing has started, she's been like a different kid. I know that getting seizure control has helped, and I suspect that adding CoQ10 & real food are making a big difference, too. But having extra, caring hands focused on her alone is very important, too. It also means that I can take care of the house & administrative issues and play with Avery while the nurse is here, and relax & enjoy "hanging out" with Jordan when the nurse is gone. It means the world to us that nurses like Robin, Hailu, Sharon, Lacey, and many others are willing to spend their days with us instead of their own families.

Some of the big improvements we've seen in the last 2 months include tracking things with her eyes, being awake & alert more, sucking, crying & groaning appropriately, and even in the last couple of weeks, smiling appropriately. We've had periods of smiling before, but we never knew what caused the smiles, or how to make her smile again. Now she smiles when we change her diaper, put her in the bath, move her into a new position, and just tonight she smiled right after Devon wiped some snot off her face -- all appropriate smiles.

We also have wonderful therapists working with Jordan to keep her muscles & joints from deteriorating (Whitney, her PT), de-sensitize her nervous system (Joy, her OT), and teach her how to use her mouth appropriately (Lisa, her ST). And we continue to work very closely with her pediatrician, who has become part of our extended "medical family" as well. We feel so grateful to Kelly who made such an important find for our family (before Avery was born). You always hope you'll never "need" a doctor for your child, but if you do, you want the best, and we feel we have that with her.

All in all, it was a long year, with many highs and lows, but luckily we ended on a high note: Celebrating with a crying, smiley, sucking, cloth-diapered 2-year-old, and a compassionate, caring, and brilliant 4-year-0ld sister who only knows one "normal." It's not the life we imagined, and it's not easy, but it's ours, and now it's become "normal" to us.