Monday, June 25, 2012

Danielle's miracle drug...

"Nothing is perfect this side of heaven, but I think God wants us to walk through all parts of life knowing He is there, and trusting Him for the final outcome." Someone close to me recently sent me this message, as we were going through a tough time with Danielle. She is such a smart lady.

Danielle was having so many seizures and they were greatly affecting her well-being. She had stopped engaging with us.  It had been weeks since I had seen her smile. She had completely lost interest in playing with her toys, and eating solid foods. There were no giggles or coos. She lost most of the head control and upper body strength that she had worked so hard to gain in the first place. She began turning her head constantly, back and forth, the repetitive behavior continued pretty much throughout the whole day. The hair on the back of her head was almost completely rubbed off. She seemed like she was fading further away from us with every passing day. Things were really bad and I was terrified. God answers prayers, and knowing He was beside me as I walked down a traitorous path was the only thing that helped me survive the journey.

I never really understood the phrase "emotional rollercoaster" until recently. The thing about having incredibly low lows is that the highs are so incredibly high. Euphoric. Danielle started a drug called Vigabitrin and has been seizure free for 6 weeks now.  Give thanks!!  As soon as the seizures stopped she started coming back to us. The head turning stopped. She was interested in her toys, and eating her favorite foods. Smiles, coos and giggles!! I couldn't even look her direction without her cracking a huge smile. This girls' grin is awesome. She must be using every muscle in her face to get that kind of glow. She is her wonderfully social self again. I cannot express how thankful and happy I am for my daughter's well-being. I had missed her so much. Her development is quite delayed, of course, after having uncontrollable seizures for as long as she did. She is, however making an impressive comeback. I am so proud of my girl!

Danielle had another EEG.  I was told going in to it, that it may not be completely normal, even though the seizures had subsided. Her neurologist called to tell me it was, in fact, NORMAL!! Normal! ... Can you believe it?  I keep replaying the phone conversation in my head. "Normal!?" I said excitedly to her new neurologist, who we don't yet have much of a personal relationship with. "Yes," he says, "NOR-MAL," sounding out the word slowly as if I didn't hear him correctly. I heard you dude, I'm just excited... couldn't you be a little more enthused!? I wish it had been Dr. O who gave us that news because she would have shared with me in celebration. It is GREAT news, even though the delivery fell flat. Her doc wanted to talk about a few other minor things that honestly, at that moment, I didn't give a damn about. I couldn't wait to get off the phone and share the news with my husband, who I knew would have a hullabaloo with me ;-).

Infantile Spasms is really scary. Some children never find their miracle drug.  I pray for other families, some who I've become aqcuainted with, who continue to fight infantile spasms, or other seizure disorders.  Although we were in a very scary place, I feel blessed that God has shown himself to me and that I've learned to trust in Him.  I hope others who are facing hopelessness can find hope and comfort in God too.

Danielle's improvement couldn't have come at a better time.  We were told by neuro that we could take a vacation from our appoitments... and that is exactly what we had already planned to do.  We went home to California to visit our family and to be a part of my sisters wedding.  Congrats K and R!!  Danielle got to meet her Grandpa for the first time, as well as her Great Grandma and Granndpa.  She was passed around that wedding reception and snuggled with so many people we love.  It made my heart swell to see them loving on her... she enjoyed it too. ;-).

Danielle snoozing while the rest of the ladies get ready for the wedding.  The purple in her dress matched mommies bridesmaid dress perfectly.  There couldn't be a prettier accessory than this baby. ;-)

My oldest daughter was all dressed up too.  She made a beautiful flower girl. (right)

Spending some time with Shamoo.  She loved having her stroller parked right up against the glass of the huge tank to see the whales swim.

First swim in the pool.  She cried that the water in the pool was a bit chili.  Thankfully the hot tub was luke warm on that day.

Tidepools in beautiful Laguna Beach, Ca.

THANK YOU for all of your prayers.. And please don't stop. Please continue to pray that the seizures will stay away. She will be on Vigabitrin for six months before we wean the drug. We'll then be waiting, watching, hoping and praying that the seizures don't return


  1. I'm in constant awe of your strength and courage. You are an amazing person! I can't even express how amazing I think you are!!

  2. You will continue to be in Dougs prayers as well as mine!

  3. I'm so happy that I was able to meet you again and to meet your beautiful daughter!! It was such a joy to see your family loving on her. She is such a gift from God!! I continue to pray for Danielle and for the rest of your family.


  4. Thank you for visiting my blog!! Danielle is absolutely gorgeous, and I'm so glad to hear the medication has helped. I know a few other children with Down syndrome who also have infantile spasms - if you like, I'm happy to put you in touch with them...

  5. She is so pretty! I'm soooo glad the meds work. What a blessing!