Pictures

It’s a late hour here, but I finally got some pictures downloaded of Miss Abbie’s first real haircut She was such a patient girl, and it turned out wonderfully! Then, there are some from the next day. Sorry there are so many…I couldn’t choose one favorite!
All is well here, and I pray the same for you!







Blessing Upon Blessing

I’ve been walking around with a subtle overwhelmed feeling that comes into sharp focus and monumental proportions as I sit down to write.

I’ll just start with last Wednesday. I had recently heard about healing service being held near our home, led by Pastor Dean. He prayed over Abbie in the ICU, although I didn’t meet him until a year later. As I listened to the details, I knew we were supposed to go, and I planned our day around it.

What is it about best-laid plans? Ours began to unravel as the nurse scheduled for 8 was not here at 9. As I suspected, she’d gotten into a car accident and was at the hospital. I had planned in time for me to get Abbie ready, and time to get myself ready, but not time to do both simultaneously. At 12:30, already 90 minutes late I loaded Abbie in the van and thought, “If these people are really all about prayer and healing, then they will know that we are right on time.”

As I was bustling around and then driving to the church, I began singing, “Enter His gates with thanksgiving in your heart; enter His courts with praise…” over and over again. I didn’t know why…short memory and lack of singing skills come to mind…but soon I would laugh at how completely God nodded “yes” to my being right on time.

We arrived at the church to find people scattered through the sanctuary praying and listening to some beautiful music. Abbie and I just sat at the back and caught our breath. A couple minutes passed before Pastor Dean emerged from an office at the back of the church. He strode to the microphone at the front, and simply said, “I was back there praying for a long time, just waiting for the Holy Spirit to come. He gave me one verse over and over…Psalm 100:4 — Enter His gates with thanksgiving in your heart, enter his courts with praise.” I think I surprised the meditative people in there with my gasp and laugh.

I took Abbie to the front to be prayed for by a small group of people. My eyes locked with one woman’s and we both grinned at the same time. She was an OT who worked with Abbie in the ICU, and was the first staff member to come by, off-shift, pull the curtain and say, “Can I pray over your daughter with you?” What a sweet reunion as she marveled at Abbie’s growth and change. The prayers for her were powerful and yet tender. I was so thankful! Then, a small Japanese grandpa looked at me with the kindest eyes and said, “I think we need to pray for Abbie’s mom, too!” At light-speed I consented and was bathed in the overwhelming love and presence of God. Whew!

We didn’t have a nurse scheduled for Thursday, but since Wednesday had fallen through, the agency found a new nurse at the last minute, “But,” they said, “She can’t lift Abbie.” Oh, brother…why send someone that can’t lift? The answer to THAT one came within 5 minute’s of Star’s arrival. I realized I knew her from seeing her at the hospital with Caleb, and had noticed that it seemed like she had had a trach at some point. I asked her about this and she said, “Yes, and a G-tube too.” Four years earlier she’d spent 2 months on a ventilator, fighting a blood infection secondary to lupus. Her right hip had been affected, which is why her lifting was limited. I walked into the room later to find Abbie and Star painting, coloring, and making a Father’s Day Card. I told her how glad I was to see this, and Star replied, “I know what it is to be in bed and be totally bored.” She also could tell me what is was like to be suctioned, if a G-tube is uncomfortable, and how hard therapy can be sometimes. What a tremendous gift of insight and empathy she has, and how tremendously blessed we were by her sharing it with us! BTW…the Father’s Day Card was the hit of the day. All the tools in the world couldn’t compare to a paper card painted by Abbie. Look for it on Ray’s office wall!

And last, but not least and not the most recent: last Monday we cut almost a foot of hair from Abbie’s mane. The week prior I had been combing her hair and noticed that it is coming in very light at the roots in the front. Strange, but it took me back in time to her babyfine, blonde hair that framed her rascal face. As I was brushing it I felt God say, “When this color is hers again, she will be yours again.” My first instinct was to shave her head and proclaim, “Done!” My second instinct was to hide the clippers. But, I did begin to consider cutting her hair.

The next day Maria came to work with Abbie, and one of the first things she said was, “All this hair is really weighing her down, and pulling it up so tightly all the time is not good for her. Have you thought about cutting it?” Well, as a matter of fact…

So, I had Tirzah, the woman who cuts my hair, come to the house. Abbie was a CHAMP and sat still for 20 minutes. Although it seems like she grew up about three years in those twenty minutes, I am tickled with how it turned out. What I wouldn’t give for curls like hers!

So, the boys are all healed from our bee misadventures, Abbie is looking like a sassy big girl, and the summer sun is shining while the Morning Star lights each and every moment. God bless!

Buzzing

Many things around here are buzzing…new knowledge I am trying to cram into my brain and then hold on to, new ideas to help Abbie, and then…literally, bees.

I’ve been delayed a few (more) days from posting because RJ and Kyle have required my OJT-nursing skills. We were at a friend’s house Saturday evening, preparing to share a relaxing meal and unwind. Most of the kids had gone out the back gate and were hiking the ridge right behind the house. Matt beckoned me up to the second floor of the kids’ fort to take pictures of the hikers. Through my lens, I saw Kyle rip his shirt off and start swinging it madly. In that second between seeing it, and figuring out what was going on, I saw RJ pinned down by the swarm of bees that Kyle was attempting to get away from.

Because the bees were attacking his face, RJ had to close his eyes, which made it impossible for him to move down the steep slope. Kyle, also being attacked, could not reach him. I was screaming for all I was worth, and never have I felt so utterly helpless.

We eventually got him down and right into a cold shower. We began getting the stingers and live bees out of his hair and off his body. I stopped counting stingers on his head when we reached 50. There were at least 20 elsewhere on his body. His pain was unbelievable and unstoppable. The pediatrician told us to take him to the ER because of the number of stings. As I was getting stingers out, he told me, “Mom, I didn’t think I was going to be able to get down. I thought I was going to die up there.” That broke my heart too much to tell him that I’d had the same thoughts.

The ER had the I.V. prepped before we got there because they’d assumed RJ would look like a basketball-head upon arrival. Amazingly , he didn’t, with the major effect being repetitive vomiting, which helped him get all the toxin out. He was fairly calm until the doc mentioned the I.V., at which point he screamed again. Thank goodness for sublingual medicine and a flexible doctor!

Unfortunately, Kyle got lost in the rush to help RJ. Walking around saying, “I’m fine”, he convinced us that his measly 10 stings were nothing to worry about. Alas, he was the one to awake the next day with an eye swollen shut and a hand that looked like a water balloon.

Just another day in our life….

The bees buzzing in my head are the friendly kind, and I am grateful, just overwhelmed. Abbie has required a change of diet recently, which has prompted a whole new round of nutrition research. Things just seem to sink in at different times, because it’s impossible to take it all in at once. This iteration has focused on enzymes. I had been giving her Ox Bile for quite a while, but recently discovered that most of it is destroyed in the stomach, which is why it comes in capsules that carry it to the small intestine (which I, of course, open and discard.) Hmmm. What to do?

Enter my favorite kind of author…another mom! Karen DeFelice has written a few wonderful books about enzymes, gut function and neurological issues. If you are a caregiver, I HIGHLY suggest her books. The one I read is “Enzymes: Go With Your Gut.” She has done what she writes about with her own children. So, Abbie and I are adventuring down this road together now. Mrs. DeFelice included a “Go Low and Slow” approach for introducing enzymes, most likely targeted for impatient mothers like me, so I haven’t even started all of the ones I am curious about. I will keep you posted on what we see.

Last week I was able to spend a couple of days in an intensive anatomy class, taught by a PhD anatomist. I learned so incredibly much about the brain, and what a miracle of architecture and engineering the human body is. But, we also had some interesting side conversations.

The professor related the incident that sparked his interest in neuronal research, recalling taking his son to see a showing of Star Wars that was delayed by projector problems. When the theater was at last quiet and dark, a young boy using a walker entered. There was one wheel that went “squeak….squeak…squeak.” But, as the boy noticed the movie starting, the wheel went “squeaksqueaksqueak” as he ran to his seat. Finding his row, he dove for the seat and let the walker just roll to the front of the theater. The professor was impressed by the fact that this boy, with an obvious neurological deficit, was living his life full-steam, and resolved to put his energies toward figuring out how to help kids like him.

His research has included attempting to grow neurons in the lab. Not only did they grow, he said they “grew like crazy!” He, like so many others, is convinced that it’s the environment the brain is in after injury that limits recovery, not the brain’s capabilities. The challenge now is figuring out the characteristics of a post-injury environment that tell the neurons not to grow.

We know one of them is structural misalignment. I was stunned to see how perfectly each lobe of the brain, and the brain stem fit into custom-molded parts of the sphenoid bone. The first time we worked with Maria, the misplacement of Abbie’s occipital lobes was her primary concern. We have seen tremendous changes since beginning this work, and I think returning the structures to their proper places is a big contributor to the success so far.

One other inhibitor is a protein appropriately named “Nogo.” Remediating the action of this protein may hold promise for spinal cord and brain injury survivors. While I was researching it last night, I hit upon a link that was an answer to my prayers. www.cnsfoundation.org is the website for the Children’s Neurobiologial Solutions Foundation. I realized that I had found kindred spirits as I read “Brain repair and regeneration are possible!” They have assembled an impressive Scientific Committee, with researchers from institutions like Harvard and Johns Hopkins, and are focused on FIXING brains, not working around limitations of injured ones. There is a parent group there, so I wanted to pass this link on to all the families like ours who still, and will continue to believe in solutions and recovery!

Abbie continues to teach us daily. And, along with the lessons, she freely gives love, smiles and joy. Today, after reading “Love You Forever” for the gazillionth time, I asked her what kind of house she was going to have when she grew up and moved into one of her own. She was very excited by this conversation, but remained pretty ambivalent about house features until I got to “fireplace.” She about jumped out of bed! So, I guess she is willing to live in a tent as long as it has a fireplace and people who love her!

I pray your summer is off to a wonderful start — can it really be June already??