Fall...Back to School

September was back to school month and I started two new programs. First I started seeing a new Physical Therapist, Christine Egan who is really skilled and she has been able to get me to do lots of new things. We use Kinesio taping, which is a technique to provide support and stability to my muscles and joints and help me learn to better control my body. I also have TheraTogs which is special compression suit which helps provide me with support and the sensory input so I feel my muscles. It's the blue wrestling suit I am wearing in the video. Both have help me gain more trunk and head control.

The other class I started was SNAP - Special Needs Aquatic Program. This is an amazing program that provides opportunities for children with special needs to get in the water, swim, exercise, learn, socialize, and play!  If you ever thought about being charitable and wanted to support a really worthwhile program, please think about making a donation to support SNAP. The program is run by Dori Maxon (who  founded it 20 years ago) and Nancy DeRoche (who has a son with special needs). These two people are amazing and have been really kind to me and helped me in the program. SNAP is currently serving upwards of 60 children a week and utilizes about 80 volunteers a week. SNAP exists because of the amazing kids who love the water, wonderful families who support them, and terrific volunteers who swim with our kids. So if you want to help you can make a tax deductible donation to: 


SNAP c/o Dori Maxon 
5830 Sacramento Avenue
Richmond, CA 94804.

Alexandria continued to grow and be really cute....

Auntie Marilyn and Grandma Florence and Grandpa Joseph came to visit and were really surprised at how fast the Gordita was growing both in length and girth. 

They brought us some outfits from China....notice that mine is a Qipao, while Alexandria got a two piece suit to better fit her "big yam" physique. I am just kidding...we know it's just baby fat.

I love my little sister....like Barney says,

I love you, you love me
We're a happy family
With a great big hug and kiss from me to you
Won't you say you love me too.

Summer Adventures

The summer was full of adventure on many fronts. I started seeing Master Zhao a renowned Qi Gong Master who many have claimed to be healed by him. For those that do not know what Qi Gong is, it is the practice of aligning breath, movement, and awareness for exercise, healing, and meditation. Qi Gong Masters are able to channel their Qi which is like super energy into others to help restore balance and align the imbalances which are the result of illness and disease. Acupuncture is a similar concept but Qi Gong Masters don't need needles and are able to channel their energy. I know it sounds kind of kooky but it's been practiced by the Chinese for more than 4,000 years. You probably have seen it in martial arts where a kung fu guy can stick a spear tip into their neck and then push and bend it until it breaks with it impaling them. Master Zhao didn't do any kung fu tricks but does have some special energy power and I am pretty sure that he could get "Shaolin" on a mugger if he wanted too.

Anyhow, we did a series of weekly sessions with Master Zhao and bottom-line is that I found it pretty soothing when I was in his presence. He was able to correctly point out that I had suffered an injury to my brain and had problems with my GI. Typically after a session, I would get really hungry and drink a lot more formula that day and poop. So maybe it was his Qi channeling in and aligning my meridians. Mommy and Daddy also noticed that I would appear to be more happy during the sessions and able to lie on the bed and not be fussy. I not sure what they are saying because I don't think I am fussy at all. Mommy also had a few sessions with Master Zhao and she felt that she did get relief to the pains in her shoulders. Ultimately we stopped going because some of the issues I have may not be able to be resolved by some realignment of my energy meridians with his super potent Qi. The analogy Daddy has is that if you have a road and the lines on the road are faded or shifted, it's harder to drive and stay on the path. So Master Zhao's Qi is like repainting the lines and helping you get back on the right path, but in my case I need actual roads to be rebuilt in my brain.

So now instead, I have Alexandria channel her babble to help me.

The other change for me medically was that I switched from Valium to Baclofen. Daddy and Mommy were concerned that the effects of Valium was starting to diminish and that I would have to keep increasing the dosage to get the same effect. Baclofen on the other hand is another drug used for spasticity and can be used long-term without a tolerance built up and effect diminishing once you get to the right dosage. It seems to do a good job but I don't get that same "happy" feeling (if you know what I mean)...so no more "Audrey's little helper"...damn it!  I have to resort to other adrenaline rushes.

Audrey playing football with Auntie Shanie

Alexandria continued to grow...we now call her "Gordita", which means "little plump one" in Spanish. I hope it doesn't scar her later on in life....well one thing we know is that she got those genes from Daddy! 

We can just tell her that it's a nickname that Daddy choose because he was always going to Taco Bell and buying Gordita's to eat and putting on sympathy weight when Mommy was pregnant with her

One of Alexandria's favorite things is to get facial massages from Mommy and the other is sleep.

The rest of the summer was fairly uneventful, we just tried to spend time as a family and took our first family road trip to SoCal in August. Let's just say it was an adventure and a test of nerves for Daddy and Mommy to want to drive down. We packed the whole family, Mommy, Daddy, Alexandria and I, plus Wolfie, Ewok and the Nanny all into a Mazda 5 which is a "small" mini-van. Let's just say it was pretty tight and we had to strap the luggage to the roof. As some of you know, I don't like sitting in the carseat for very long, so we had to make 3 stops within the first 100 miles of the 400+ mile trip. Well the good news is that after 8 hours we made it in one piece and Mommy and Daddy are still married. The better news is that Mommy and Daddy decided to buy a new black Toyota Sienna SE for the trip home!

We also got to go swimming at Auntie Colleen and Uncle Dirk's place. They were very nice and heated the pool up for me.

Some gloomy days in June

June was a tough month. Mommy and Daddy weren't getting much sleep with Baby Alexandria still not sleeping through the night. Also we found out that I got another three letter acronym CVI....which stands for cortical visual impairment. Basically it means that although my eyes work and function, the signals are not being processed properly by my brain. It's the result of the PVL (periventricular leukomalacia) I suffered while in the NICU. We didn't really know how much vision I had as a baseline but what the ophthalmologist told us was that typically there will be some improvement. That is why I find it difficult to make eye contact or track objects. It's not that I am shy and don't want to look at you but people with CVI have better peripheral vision, so I am not looking directly at you so I can better see you.

As you can imagine the CVI news was pretty shocking and dampened everyones spirits. I think Daddy must also have some visual impairment to go out in public like this....

But the CVI was just another hurdle that we'd have to deal with so Mommy and Daddy did some research  since traditional western medicine didn't really have any treatment options for the CVI, PVL or cerebral palsy. They heard some stories of other people who had brain injuries getting acupuncture and improving. Well, if you do some research there is lots of evidence that acupuncture can help people who have had a stroke regain function. So we decided to give it a try.

The first acupuncturist Mommy and Daddy took me too was an awful experience. The acupuncturist was a traditionally trained one from China, who believed in a regimen of multiple needles done quickly all over the body. Let's just say, I felt like a pin cushion or a voodoo doll.

It was torture for me and Mommy, who had to hold me. We did a few sessions and I got use to the ones in my head but the ones to the body were no fun. So Daddy talked to Auntie Edith (his old roommate) who is an acupuncturist and got some recommendations on acupuncturist that worked with pediatrics. After a bunch of calls and referrals, we ended up finding Carla Cassler, an acupuncturist in Albany. Let's just say the experience with Carla was night and day. My first session with Carla, I hardly felt the needles in my head.

Carla practiced a Japanese style where the needle didn't need to be insert as deep. She kept in mind that I am just little and there isn't a lot of meat on my bones requiring the needles to be jammed in. My sessions with Carla were fun! She even showed Mommy and Daddy how to do some stimulation of meridian points using a toothbrush.

The acupuncture was giving us all some hope that we could try to stimulate the neural pathways in my brain to help both the cerebral palsy and cortical visual region. If nothing else, we'd be unblocking my meridians and helping my Qi flow.

Otherwise on the health front, I continued to do my therapies and worked on my sitting and head control.

Little sister Alexandria was growing fast and getting cuter everyday.

I was enjoying being the big sister and happy to have a little sister.

Even though I got the gloomy news in June, all I can do is laugh and hope for the best.