Monday, April 15, 2013

Bella

So I had a lot to write about yesterday... so much that I needed to break it into 2 posts, so here is part 2 of our Wichita Story:  Bella.

Bella was diagnosed with Lyme disease two years ago.  At the time, I had heard that Lyme could be passed from mother to child through the placenta, but had been hoping that this was not what was happening to my daughter.  After watching her suffer with extreme fatigue to the point of not being able to finish a soccer game, emotional distress, insomnia, headaches, body aches, fevers, night sweats and joint pain, we knew it was time to take her to my LLMD to get evaluated.  She was clinically diagnosed on the spot, but Keith and I wanted to have her IGeneX tested before we subjected her to the rounds of antibiotic treatment which I had already been undergoing.  Her test did come back positive for the same exact "bands" which were positive on my test, which made me sad.  I had passed this on to my first child, and most likely my other two babies as well.  I mourned this fact, as my heart was broken for what Bella would have to face to treat this.  I also knew that it had lay dormant in her body since birth, so I did not know what damage had already been done.

Bella started antibiotic treatment, and took it like a champ.  As a then 7-year-old who had to take handfulls of pills each day, she didn't fuss or fight - she just took her pills, just like mommy.  We were now going through this together, and I had to be even stronger.  This fight is very much a private one for us, but we are united in it.  I would never want Bella's identity to be wrapped in her having Lyme, the same as my identity certainly is not.  It is something we deal with... something we fight.  It's something that gets us down every now and then, but Lyme will never be an excuse for us.  I have taught her over these 2 years that fighting Lyme makes us different from others, but it's also making us stronger.  So she fights, and she does it (for the most part) with grace, and I am proud of her strength.

So back to her treatment - after all of this time, Bella has been exposed to just about every antibiotic and combination of antibiotic, antimalarial, antifungal drug there is.  In recent months, she began having rashes and reactions after taking her medication.  I got quite a few phone calls from the school that Bella was having another rash and that they were following her newly implemented allergy protocol and administering the benadryl.  She now has an epipen at school in the case that anaphylaxis could result from one of her meds.
At was at this point that I began thinking it was time for Bella, too, to start another kind of treatment.
Keith and I decided to start supporting her immune system and pull her of off the antibiotics that we had now become very concerned about giving to her.
Bella was happy about this - no more pills.  But after a few weeks, her symptoms came creeping back.  After I had found the Hansa Center, we decided that after I had been there to see how things worked out, she would be next.  However, our Disney vacation had a detrimental effect on Bella's health.  The stress and exhaustion of the trip must have allowed the infection to proliferate once again, and she was obviously in more distress than we had seen her in for a while.  On the drive home from Florida 8 days ago, I sent an e-mail to the wonderful patient care coordinator at Hansa, asking her (and knowing that it would be a long shot) if there were some possible way for Bella to be able to come with me for treatment.  I got a reply from her on Monday, saying that their schedule was completely full.  Bella would have to wait until we could go again in July.  So we scheduled us for July, and I said a prayer.  I prayed that if this whole Hansa thing was meant to be, that God would make a way for Bella to be able to go with me this time.  I had peace, and I left it in God's hands.

That same day, we took her back to our LLMD in D.C., and they concluded that she was most likely dealing with Babesia (a lyme co-infection) again.  So we decided to put her back on antibiotics and the antimalarials that they prescribed to hopefully gain some ground on this infection again.  

On Tuesday I got a call from the Hansa Center.  I anxiously answered the phone to hear Kara's friendly voice - but I already knew what she was going to tell me.  Bella had gotten in.  Kara had sent a note to the doctors explaining her circumstances and our plan to restart the antibiotics, and Dr. Jernigan had put Bella on his schedule.  I was so overjoyed at the Lord's faithfulness that tears were streaming down my face as we got Bella all set up for her treatment.  That was an answered prayer that she needed, but I needed as well.  My faith needed that boost, and I had confidence that this was exactly what we needed to be doing.
The next hurdle would be the travel arrangements.  Knowing that we were getting pretty close to our departure date, I went online to find plane tickets for Bella only to find that there wasn't anything available for her.  Dismayed, I went about the rest of the day, knowing that I would have to call the airlines later when I had some time to talk to someone (most likely in Bangladesh who spoke terrible English) about getting her seats.
So again I prayed.  It went something like this: "Dear Lord, you've taken care of this for Bella so far.  Now please handle her travel arrangements, because I know that this is your will."
Later after the kids were down for the night, I made the dreaded call to Delta.  To my delight, a sweet girl named Rachel answered my call.  In a matter of five uncomplicated, plain-English speaking minutes, Bella had seats right next to me on our flights and connections to and from Wichita.  Amazed again by God's faithfulness, I went to bed that night with peace and joy - delighted that she would be coming with me, and that we would be able to start the healing process at the Hansa Center together.
God is so good!






1 comment:

Amanda B said...

God is soo good! I have tears just amazed at how God works miracles! I am so happy that everything worked out and you both will be able to get treatment together! Again, going on this journey together...who better to go through the journey with, then your mom! Praying for you both!