See Christian and Lola's ISR video!

Sunday, January 2, 2011

2010: A Look Back

The first day of 2011 was like a "non-day." We didn't do anything but sit around watching toys pile up on the floor as Lola left a trail everywhere she wondered. It was one of those days where I got to sleep in really late and have chocolate cake for lunch. I didn't feel overwhelmed by the mess or the unproductiveness (if that's not a word I just made it one) of it all. It was a "non-day" with no purpose to it but just being. Being with each other as a family, being with the TV and it's movies we've already seen a hundred times and being with take out food and...chocolate cake. What a perfect way to start out the new year.

It's a far cry from what 2010 was. Yesterday I was thinking about it and wondering - What did we do last year?

Well...

In January we were doing HBOT, pretty much five days a week. Christian was pretty irritable at this time and cried a lot through the day until he fell asleep in the evening. We also started receiving durable medical equipment and therapy toys. We started considering Botox injections for tone and Christian started vision therapy with our awesome vision therapist.

February brought Christian's first chair, a false alarm with his hips, and an impromptu try out for a few days at NAPA therapy center in Los Angeles. That's when we got our first taste of what intensive therapy was like. It was also Christian's first trip to the ocean. [LOVE]

March was a big month for Christian. Christian started the month receiving his awesome quilt from the August Moms that hangs on the wall right now overlooking Christian and his little sister in their room. Every time I look at it I feel peace and love and it's like I'm looking at it for the first time. And then the BIGGEST news...after nine months Christian lost his trache tube! We met new super mommy friends and super kiddos in Denver and tried out ABM therapy. Christian also rolled from his side to his back for the first time and got his first haircut. We ended out the month with his first EEG to see what all those pesky jerks were.

In April we continued with another ABM intensive session closer to home in Phoenix and Christian was able to get in the pool for the first time since his stay in rehab. In April we finally got to the bottom of those jerks and unfortunately they were seizures - infantile spasms to be exact. We started our trial with Vigabatrin (Sabril) to hopefully rid Christian of these horrible nuisances.

May brought Mother's Day and Mexico! We had an amazing family vacation to Mexico where we put Christian's feet in the sand and soaked up the sun. Christian was so relaxed and it was then we knew for sure our boy was a beach bum.

In June, Gabe and I learned CPR, which was something very important for both of us to do as part of our healing. We also spent a week at NAPA therapy center, which was awesome! Seizures also returned and it was at this time we were wondering what to do next. Despite his seizures and irritability being at it's worst this month, Christian miraculously passed his swallow study! We press on tasting and eating by mouth!

July was a biggie because it was the one year anniversary of Christian's accident. It wasn't heavy, though. We were surrounded in love both near and far. We also attempted a few other things for seizure control but they made things worse. Fortunately, we were able to move past those options quickly. Lola also started ISR, which is an infant swimming rescue program. At this point Christian's tone and extension greatly improved and he stopped throwing up after almost a year of constant vomiting every day.

Christian turned two years old in August! We also made plans to go to Euro-Peds and Christian continued to be vomit free! He even started gaining a little extra!

Between August and September we held our 2nd online auction and 1st Panda Express Fundraiser. We also went to Michigan to do a two week therapy trip at Euro-Peds! It was a great trip and further strengthened our belief in intensive physical therapy. It was during this month that I finally made the decision that we would give the ketogenic diet a try.

October and fall brought pumpkins, Halloween, and a new realization that we might need to try one thing at a time. This was particularly difficult seeing as how I'm a multitasker! However, we started gearing up for the ketogenic diet and slowing down with everything else.

In November, while waiting to begin the ketogenic diet, we spent some time with our new friends on play dates to the park and to the zoo. More head control and weight bearing returned after a few months of Christian being a noodle. Christian also got a new bed from Daddy and a new light box from his vision therapist.

In December we finally started the ketogenic diet. It was tough and still continues to be, actually increasing seizure activity rather than decreasing it like we expected. As of now the jury is still out. But a very high point of December - Christian's "first" picture with Santa and Mrs. Claus.

..........

Okay, I needed that.

I was kind of dreading the recap, but I felt like it was my blogger duty to do it. So I reluctantly sat down at the computer and scanned through all of the 2010 blogs and it was very evident that we, in deed, did make some progress.

It's hard to see and realize progress when you come out of a tough month. And I will fully admit that December, out of all months, has been our toughest by far. Despite our setbacks, Christian has come so far! No trache, no throwing up, more movements, passing swallow study, reaching...did I mention no vomiting? That has made life so much easier.

As for what we have planned in the coming year...tweaking the keto diet, we have a new specialist on board with some new possibilities, a trial study for treating tone without medication, we might possibly visit the cranial sacral doctor again, and we will be doing more HBOT. I'd also like to make more plans for another round or two of intensive therapy and there are a few more things up in the air. You never know! Most of last year's trips were planned with about six weeks notice. I'm impulsive like that. Or maybe it's not being impulsive, but rather just noticing when doors (and windows) are open. And then I immediately make plans to jump through them and quickly.

And those "non-days," I'm hoping to have more of those. Because what they really are, are days full of meaning and just being present with my family.

There is something about the New Year that signifies so many new possibilities and hope. And despite my weariness, I still have hope for my son.

Dum spiro spero.

4 comments:

Anonymous said...

Shauna - It is great that you posted this... It gives us an idea of what our year will look like. We will be beginning HBOT in late January and will be pressing forward with some intensive therapy for Owen.

Thank you so much for your strength and perseverance, you are a model for us!

Love,
David, Kelly, Hannah, Nicholas, Owen and Iris

ShaunaQ said...

I'm so glad it helps you and I hope it gives you hope!

I can't wait to see what 2011 has in store for our boys! And I'm honored to be your model!

WhitneyBooze said...

First off - I must say that you are SO RIGHT to "still have HOPE for Christian."
Second - I can't believe how far YOU have come. You sound like one of the 'special moms' who have been in this place for several years. It is overhwhelming for me to realize that you have only been in this place for 1.5 years. It hasn't even been 2 years yet!! You are phenomenal.
You are a Rock Star.
And I admire you.

Third - Christian is following some of the same paths as Suzy did in her recovery - she is just 1.5 years AHEAD of him. (In 3 weeks we will be facing her 3 year anniversary.)
I have some good feelings about Christian this year. Now that the vomiting stopped he will feel better. Suzy, too, vomited for the first year!! One note - the more she began eating by mouth, the better she felt, and the less she vomited.
She did not get full GI control until she had her g-tube removed...
And if we can get his seizures to slow down that will also help.
Question - what is this 'treatment for tone' that you speaketh of??? I must know!!!
Suzy's tone has gotten worse lately..... tighter and tighter... but she had gotten looser towards the end of summer and early fall. (I'm wondering if it's because we haven't done ABM since Sept.?) or... maybe because her Botox from July has worn off in her hamstrings and it's causing her feet, ankles and knees to be tighter which is causing her to be uncomfortable, which is causing high tone to move right on up her body!!!???##!!???
I wish there were ReAL answers for our kiddos.

Anyway - hugs to you and lots of wonderful wishes for a bright 2011.
Whitney - www.suzybooze.com

honestmedicine.com said...

My just-published book, "HONEST MEDICINE: Effective, Time-Tested, Inexpensive Treatments for Life-Threatening Diseases," features the Ketogenic Diet and 3 other lifesaving treatments.

Contributors to the book include Jim Abrahams, the Hollywood producer who has championed the diet for over 15 years; and Milly Kelly, the dietitian at John's Hopkins who kept the diet alive for 50 years, from 1948 to 1998.

On Amazon.com: http://www.amazon.com/gp/product/0982969007/

A review of the book: http://jeffreydach.com/2011/01/07/honest-medicine-by-julia-schopick.aspx

Thanks so much.
Julia Schopick
Author, "HONEST MEDICINE"
www.HonestMedicine.com

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