Wednesday, September 28, 2011

Therapizing Baby J

I'll be honest: therapy is a drag. I often have an uncooperative patient and a long list of objectives. It can be difficult to get the timing just right: Juliana needs to be in a good mood and Calvin needs to be occupied. It's a rare day that we accomplish everything that we should but this seems to be the norm for kids in therapy.

Juliana sees an OT once a week and a speech/feeding therapist every other week. I work with her every day practicing the various things that therapists have shown me. Some of the things that I try to do each day:
  • Tummy time - we do this three different ways: flat on the floor, elevated on top of a towel, and on the exercise ball. While she's in this position I have to pull out all the tricks to get her to look from side to side.
  • Rolling - she's been able to roll for quite some time, but she has a strong preference for her right side. We're trying to get her to roll to the left. She's not a fan.
  • Eye patching - I thought that this would be very easy but it's not. She doesn't like wearing the patch and if I don't keep her distracted she'll eventually pull it off. 
  • Feeding therapy - I feed her with a spoon several times a day. Sometimes we try the bottle too. While her oral aversion is very much improved she is still very sensitive and I am really careful when working with her. She has some low tone in her mouth and her eating skills are rudimentary (largely from lack of experience, in my opinion). Though we've seen a lot of progress in the past few months this type of therapy is very slow-going. Feeding disorders are complex. It's sometimes difficult for people to grasp why she won't eat - more on that later.
The above list is just some of what we do daily. Therapists are constantly adding to the list. It may not seem like much.... but trust me, it is. (Add in the fact that David is essentially not home from Monday - Thursday....)

One of the biggest downsides to needing so much therapy is that you start to see your child as a patient and not as a little person. I have to remind myself to play with her in a non-structured way. We spent this past weekend at the beach and I gave myself a break from therapy while we were there.  I did this because *I* needed a break but I didn't realize how beneficial it would be for all of us to just spend the weekend as a "normal" family. It was the first time in almost seven months that I didn't think too much about Juliana's various issues and therapies. Now I feel recharged and ready to tackle our long list of objectives. I am realizing that I need to take a break more often. Juliana was very happy and smiley while we were there - maybe she needed a break, too.

Monday, September 26, 2011

How GAPS found me

I have never in my life prayed so fervently as I did the second month of Juliana's life. If your baby is constantly in pain, if she screams when you feed her, if she cries in her sleep because she hurts so much, if the doctors don't have any answers for you - you WILL be driven to your knees in prayer. 

I scoured the internet for information that might help Juliana. I spent hours and hours each day reading and I really didn't find anything that helped me much. I was without a diagnosis and without much of a prognosis. Juliana had an NG tube at the time (she's had a tube since she was 2 days old due to a NICU stay) and I knew that she would never eat if we couldn't stop the pain.

Enter the POPSICLE forum, one of several forums where I was discussing GI issues. I wrote a post about getting a g tube and I made an offhand mention of Juliana's intolerance to my milk. Not too long after that I received a message from a woman who asked me a little bit more about Juliana. I answered her questions and she told me that my story sounded familiar and she threw out a diagnosis that I hadn't considered: protein intolerance

Nichole doesn't push GAPS onto anyone despite her amazing story. During our initial conversation she casually threw out the term "GAPS" and she gave me a link to her blog. I quickly read everything that she had written and I was blown away by her daughter's story. I began to read everything that I could find about protein intolerance/FPIES and about GAPS. It became clear to me very quickly: I could take a wait-and-see approach and hope that J might someday "outgrow" her food intolerance or I could take steps to heal her NOW. The choice was easy: GAPS was the solution.

I've never before had such a clear-cut answer to prayer. Several hundred people were praying for Juliana and her path to healing was given to me by a stranger on the internet, completely out of the blue. Nichole read my thread about G tubes even though feeding tubes are not a part of her life. Providential? Absolutely. (And if you know me, then you know that I do not make light of such claims).

I sometimes wonder if I would have eventually stumbled onto GAPS on my own. Perhaps I would have, though it's not something that I've ever seen mentioned in the mainstream - not on the message boards and websites that I frequent and *certainly* not in the medical community. I want to help change that, particularly for the many babies and kids out there who need GAPS. 

Sunday, September 25, 2011

Where we are Today

Where to begin the story of our long and arduous journey? At a later point I will try to address Juliana's NICU stay, the second month of her life where she was constantly in pain, the many specialist visits, the g tube, the process of searching for a diagnosis. For now I want to jump right in and record where we are in the healing process.

Calvin and I have been on full GAPS for about 2 months now.  Neither of us seemed to have any major digestive issues pre-GAPS yet I've seen various improvements that are significant enough to keep me motivated. More on this later.

Juliana has been on a diet of 2/3 formula (EleCare - the ONLY formula that she could tolerate and the ONLY food that did not cause pain) and 1/3 bone broth + coconut oil for about a month. She now has several safe foods: lamb, fish (red snapper), chicken, beef, coconut oil and fermented cod liver oil. I think it's pretty amazing considering that she reacted so violently to my breast milk, even when I was on an elimination diet.

In the next month or two I hope to move Juliana to a diet of homemade formula - something like the Weston A. Price liver-based formula. While EleCare was a godsend, I often wonder if it is inhibiting her healing. Next up: I plan to trial olive oil and hope to add it to her safe food list.