Josie's Journey

Oh the irony of this song/blog title! "Hold My Breath," a song by a band I love called Holy Ghost! (The exclamation point is actually part of the band's name). We just saw them, in Montauk, last Saturday night a few hours after returning from three days at Stonybrook Hospital. We were in the hospital, basically because Josie Held Her Breath. At around 2:50pm Thursday August 15th, Josie was in her crib napping. She suddenly woke up screaming/crying. I was sitting on the front porch on the phone and Janice, our nanny, was in the bathroom just across from Josie's room. Neither one of us ever heard Josie scream like this before. I hung up and ran inside. Janice saw her in her crib, screaming with her arms and legs stretched out stiff. She picked her up and met me in the living room. I grabbed Josie and was petrified to see this screaming. It was like she saw the devil in front of her. Her arms and legs were stiff and she wouldn't stop. I called 911. At that ti...

The blog title is a song title.. My Little Girl - by Jack Johnson. The lyrics go like this: Hey little girl. Look what you've done. You've gone and stole my heart and made it your own. You stole might heart and made it your own. Jack was actually on our boys names list, and then we'd have our own Jack Johnson, but Tanner won. Anyway, GOOD NEWS!!! Josie weighs almost 21 pounds! I brought her to the gym in Montauk to weigh her and as we suspected, she has gained about 3 pounds! If you've been following this blog, you know what a big deal that is! She's also getting closer to rolling on her own. She was never able to pull her arm out from under her while practicing rolling and now she can. She continues to show real signs of improvement. And she is just so so sweet and adorable. On a separate note, I am in search of more doctors. We're looking for a new neurologist, and any top docs who specialize in developmental delays, brian injury, etc. I just want ...

We've moved out to our beloved Montauk for the Summer and someone loves the ocean air. We decided to take a break from Josie's typical schedule of back-to-back therapists and appointments all day. We all needed a break and I think Josie can use some new sensory experiences. That said, I did find an amazing OT in Montauk who is coming twice a week, so she's still getting some very good therapy. I really love this OT, Lori. The truth is that since we've been out here, I've had some scares that she was not progressing, but in the past few days, she's wow'd me. Today I almost cried when she basically rolled over by herself! She's moving so much more, scooting her little legs under her belly, and reaching for what she sees in front of her - with both hands! This is new. I recently described Josie's development like Groundhog Day, she's been developmentally 4 months since being 4 months - so for 15 months. I am pretty certain she's gaine...

Josie is now 18 months old. Here's an update... First, the most exciting news: At the last weigh-in with Dr. Wilkens (pediatrician), we finally saw the curve on the growth charts move up! Josie gained one pound and her head circumference increased by one centimeter! One lb./cm might not sound like a lot, but this hasn't happened in nearly 9 months! I would stand by that scale like a contestant on The Wheel of Fortune afraid of landing on Lose a Turn. Month after month, I'd wait for the digital number to hold steady and when it finally does, it always read between 16.8 - 17.5. How was this possible? Pat Sajak shakes his head like, sorry dude. Well, she is now 18.7 pounds, 30 inches tall, and her head is 43cm. That is still below the charts for weight and head, but seeing the line on the chart move diagonally upward and not horizontal is all that matters - we're in the game - on our way to solving the puzzle. For height, she is actually on the charts - about 8%. Su...

We got the results from Wanda, the Naturopath I mentioned two posts ago. Just to refresh, Wanda did a saliva DNA test to find out what's going on inside that little body. She found....drumroll please... diphtheria and graphites and a deficiency of iron and nitrogen. Let's start with Diphtheria. The DTaP vaccine that babies get at 2 months, 4 months, and 6 months stands for: D - Diphtheria, T - Tetanus, and P - Pertussis. To be clear, Josie doesn't have the actual illness, but a significant amount of the Diphtheria toxin was found in her body. I'm just wondering how a baby gets the very bacteria that she was vaccinated three times to prevent? I'm trying to wrap my brain around this one. I'm doing research on the disease and the controversy around this specific vaccine. I won't bring my findings here as my focus and energy now is just to rid Josie of the toxin. And that's Phase One of Wanda's regimen. Wanda also found graphites aka lead. I asked wh...

We took another road trip this week - to Steelers Country. As if I care about football. I don't, but that's a shout out to Uncle Peter. So we went to see Dr. Christine Roman-Lantzy, who is one of the few experts in Cortical Vision Impairment (CVI). She actually wrote the book . I made this appointment in September so needless to say, I was very excited to finally meet her. Josie was diagnosed with CVI at around 9 months. It's actually amazing to me that the first opthamalogist we went to did tell me it's her brain and not her "vision" (the structure of her eyes are fine), but she never told me about CVI. The second opthamologist handed me a one-pager with the definition of CVI, but never discussed the importance of tackling it immediately with CVI-specific vision therapy. The next two eye doctors had nothing CVI-specific to tell me either. The fact is that a child with CVI has a great chance of overcoming most of the challenges if they engage in the corre...

Dave Matthews popped in my head just as I was ready to write a title. I do have so much to say and I'm hoping I can keep this post organized. So just as I've been feeling that I need to head down a new road, I spoke with 4 different women and one man who gave me just that - a new hopeful direction. I finally spoke with other moms who have experienced a situation similar to ours and who can say their children are recovering. To hear those words - and I'll end the sentence there. While I was at intense PT with Josie, a woman named Melissa came in with her son Matthew. I've seen them there for months and I couldn't get over how great Matthew looked. He's younger than Josie and was walking like a champ. I told her Matthew seems absolutely fine and she says she credits her team for getting him caught up. Part of her team is a woman named Jodie Collins, a PT who does CranioSacral Therapy. Melissa actually gave me Jodie's card a while ago, but I thought I had b...