Worked a half day today at my primary job to make up the hours I lost to interview for Walmart earlier in the week.  The time went quickly as I got to sit next to a wonderful lady who I rarely get the chance to speak to.  I even made my target in terms of the number of leads I was able to generate.

From there I hit two supermarkets.  And then I came home and cooked for the week ahead.  I made two huge pans of macaroni and cheese with bits of steak, caramelized mushrooms, and sauteed mushrooms.  I baked some chicken thighs and legs.  I even roasted some eggplant with plans to make Bengan Bhartha later in the week and turned the meat from some chicken 1/4′s into chicken salad which Accolan can turn into something akin to tuna melts one night this week.

We are blessed with being able to have our niece AngelGirl over for the weekend, even if I’ve only seen her in passing.  All 3 girls have been holed up in one bedroom for most of the time giggling, though we did get them to go to the community pool for a bit.  Tomorrow while I’m at work (11-7) the plan is for them to watch a movie from the $1 a night Red Box, Beastly, and to bake cookies.  I can’t say how much it means to have them all getting along so well and seemingly enjoying each others company so much.

Hope you are all enjoying your weekend.

Blessings

Jia

Voice? What voice.

When last we spoke I had just purchased a bunch of plants. On Mother’s Day most of them got put into the ground and by the weekend that followed the last few got planted.  But, my friend Lady Rose has suggested we go back to to Well Sweep Farm for their Spring open house which includes tours and lectures (where we went for my 40th birthday) for my birthday this year.  Though, we’re going to try and make it a family outing.  Odds are I’ll be coming home with more plants, LOL.  So, between now and June 4th I have to figure out a planting plan.

When we last spoke Accolan and I were still struggling with getting back into a healthy eating plan.  A week ago we went back to the smoothies that worked so well for us last year.  Two nights ago we broke down and ordered a Vitamix blender, we’re calling it our anniversary gift to each other.  I could give you a laundry list of reasons why I felt it was worth the expense, but it really comes down to two:

• the Vitamix will allow us to gradually add more and more vegetables to our smoothies without changing the texture – allowing us to both lower the cost involved while increasing the nutrition
• the Vitamix will allow me to increase the variety of foods I am able to enjoy in my smoothie, without so much worry about bits of skin, pieces of green leaves, and tiny seeds triggering pain due to all of the problems I have with my digestive tract

In other news today is our 17th wedding anniversary and the plan is to go to New Hope for dinner today and to Atlantic City for a couple of hours tomorrow.  Send lucky vibes our way!!!

Blessings

Jia

I’m still trying to a find my voice again.

In the meantime the family and I honored Beltane by hitting Bear Creek Herbary last weekend and buying a bunch of herb and vegetable seedlings. We also hit Home Depot and purchased some herb and vegetable seeds and some other basic supplies (bamboo stakes, potting soil, etc). The herbs have been potted (with one pot holding seeds for chamomile, lavender and chives) and so far we have sweet basil, thai basil, sage, rosemary, and lemon verbena doing very nicely.

I cut back my daffodils, spread some perennial flower seeds around them and hope to have a blooming flower bed … well …. eventually. I’ve never successfully grown flowers from seeds outdoors, but here’s hoping this year I get some blooms.

I still have dirt to buy to put around a number of tree bases on the property and plan to plant some perennial flowers over the rest of the spring/ early summer and more bulbs in the fall.

The vegetables have yet to be planted. Accolan has been doing the work to make me a small garden plot – uprooting a bush, a mess of ivy, and several buried tree stumps (including once that probably weighed as much as Sephoni), additionally he and Pop-Pop pruned the trees above my “bit of earth” to allow a bit more sunlight to make it through. It’s been slow, tedious, and painful for him. Not only is the work hard in of itself, but with his chronic back pain each day of work leads to days of recovery. Words cannot express how grateful I am for the labor and love he’s put into this project.

So far, we’re going to be growing eggplant, zucchini, a couple varieties of tomatoes, sweet peas, and cucumbers (burp-less). I even have sweet red corn, and kaleidoscope carrots to grow from seed.

Even better, once the plants I have are in, Accolan says I can go buy more.

Best of all, my father has agreed to let us put in a bigger garden next year!!!

If nothing else has me inspired my first real, in the earth, veggie garden sure as heck does.

Blessings

Jia

Sephoni

She went back to school yesterday. We’re not sure why (and we are certainly not complaining), but, her pain levels are significantly lower than they were this time last week. We have her off all medication and she wears the TENS unit to school.  We are awaiting paperwork from the pain clinic over at CHoP, getting blood work, and following up with her pediatrician in the meantime.

However, 10 weeks after the original injury at Taekwondo, her back is still one big spasm, but I am doing light massage (with Tiger Balm) as well as energy work on it most evenings. She is still not sleeping. I’m at a loss for what to try next in this regard … melatonin, lavender oil on her pillow, warm milk, prescribed muscle relaxers, even Benedryl … none of it has any effect.

In other news Sephoni has officially become a young woman.  Its funny, in just about 2 weeks, it will be 5 years since her sister hit menarche.  It is thanks to blogging that I even remember the exact date.

Reya

She’s been doing fairly well, in fact she’s been doing great! She’s starting to be more responsible and even more helpful around the house. Her report card was all A’s and B’s again, her classes are chosen for Junior year, and we’re currently planning to start her at a local community college after graduation. The changes to her medications are also going well, and we see her Doctor this Fri to talk about the next tweak. The main stumbling block right now is the lack of a therapist. I am hoping that Friday’s appointment will help us get that on the right path as well.

Tonight Reya tested for her high red belt in Taekwondo. This was a huge accomplishment for her.  Not only did she do well (even breaking a thick board with a flying side kick) but she was singled out for praise by her Master.  I am hoping that it will help us light a fire under her to get her back to going on a more regular basis, especially as the exercise (and the environment) are so good for her.

Hoping that you’re having a great week with your own loved ones.

Blessings

Jia

image by kingrex32

Just a few days before Yule ’10 Sephoni got hurt during Taekwondo practice.  They were working on doing dive rolls.  In a fashion similar to the one shown in this video, the idea was to jump over a barricade (made up of stacked body shields) and transition the landing from hands to shoulder and “rolling” to a standing position.  In the vernacular of my girls Sephoni’s attempt on the night of 12/16 was an epic fail.

After a running start, and a dive over the waist high barricade, she landed on the juncture of the back of her skull and top of her neck. The rest of her followed, folding her in half, the weight of her body on top of her. It knocked the breath out of her, scared her half to death, and resulted in her being taken by ambulance to our local hospital on a back board, fully immobilized and thankfully cleared of any serious spinal injury.

We left with a “working diagnosis” of a severe back and neck strain. A follow-up appointment with her pediatrician a couple of days later led us to a local orthopedist.  Who, after having her in his care for 6 weeks and seeing her pain get gradually worse ad opposed to better (and having no explanation for us) used the finding of a Chiari 1 malformation on her MRI to wash his hands of her until we could see a neurologist.

With the realization that the first appointment we could get with a pediatric neurologist was months away, our child was suffering, and with our (former) orthopedist’s last words echoing in our memory we decided to get a second opinion.

Our next stop was to a pediatric sports medicine office.  At first we were hopeful. The Doctors seemed nice.  They took lots of time with us.  However, they quickly decided that part of her issue was a “missed diagnosis” of a concussion and started treating her accordingly.  Their first recommendation was a week home from school with a focus on quiet and rest.  When that did nothing to alleviate her symptoms, and our return visit found them still focusing solely on their belief that she had a post concussion syndrome issue (writing her out of school for a second week, and adding an off-label use medication to her regimen to treat “brain fog”) instead of, also, helping us find a way to diagnose and treat her pain we decided that it was time to head back to CHoP (who took such good care of Reya last summer).

Today we saw a pediatric orthopedic surgeon.  He listened to her history.  Did a quick exam.  Reviewed our films briefly.

The good news:

He doesn’t feel that anything has been missed on her films.

The bad news:

His best guess is that we are dealing with a case of RSD, also known as CRPS.  In other words, a type of chronic pain.  A diagnosis category that I am all too familiar with after almost 9 years of living that nightmare with Accolan.  His advice is that our next step is a pediatric pain management doctor.

The I’m not sure news:

We still don’t have a cut & dry answer.  No one is ordering more tests. Even though my own research indicates at this point we should be looking into things like blood-work (for signs of infection or juvenile arthritis markers) or a bone scan (for fractures or other bone-related issues that other tests (yes even MRIs) can miss.

The bottom-line:

After some fruitless calls trying to find a “local” pain management doctor who sees pediatric patients and takes our insurance, we have a call in to the Pain Management department at CHoP.  They take our insurance (yay!) but they are about a 3 hour (or longer if traffic is bad) round trip away. I have no idea when her first appointment will be.

Until then, the best tool we have to manage her pain are a TENS unit, which helps, but only during the day and can stop working without warning. We have nothing that helps her at night and so she sleeps in short bursts – usually no more than a couple of hours at a clip.

She is still on a written medical excuse from school. But, according to that she goes back on Tuesday (out of gym (and Taekwondo) until late March).  She’s going in 2 weeks behind, because the sports medicine doctor advised that we not have work sent home. I have no idea how she is going to handle returning to school. Her grades were already slipping as a result of the pain and lack of sleep interfering with her ability to concentrate and focus.

Because we’re technically in between doctors right now, we may have to go to her pediatrician to get the necessary paperwork to force the school to make necessary accommodations for her (and that’s only if they are willing to help us).  Because I have no way of knowing what the next months hold I don’t know if its advisable to sign her up for summer camp (a local day camp program) and I only have less than 6 weeks to decide (in order to get the lowest price for the 7 week program). Life is, in short, on hold.

What I’m after:

A doctor who will listen to my concerns.

A doctor who will not stop until they figure out why my child hurts.

A doctor who will appropriately treat my child’s pain so that it no longer interferes with school, play, and sleep.

And if I don’t get the things I am after … I am going to scream.

Image thanks to JenniferLynn123