Sunday, October 11, 2015

10/10/15

Another year's gone by and we couldn't be happier with Graham's progress. In terms of medical milestones I can report that Graham has outgrown his thyroid issues and as such he takes ZERO medications and no longer sees his endocrinologist, Dr. Huang. He is also doing well with weight gain and growth, therefore we are done seeing his gastroenterologist, Dr. Abrahamson. We still touch base with his OT at Kaiser but we haven't seen her since the beginning of the year. But we do go to PT at Kaiser once a month and we see his cardiologist, opthamologist, and nephrologist twice a year. The number of appointments we have to drive to Santa Clara for have been reduced dramatically and it is wonderful to actually have time for fun things.

Graham had been part of the Early Start Program since he came home from the hospital after his second surgery. He had a teacher (case worker), a speech therapist, and an OT that came to our house each week. They set goals for Graham's development and then helped him reach those goals through therapy that was tailored to him, meaning it involved cars in some way ;). Cyndy, his first teacher, was diagnosed with breast cancer and had to take a medical leave in May, but Mary, Graham's speech therapist and Angela, his OT, continued to visit us and all three of them became a huge part of our lives over the past few years. Unfortunately you can only be followed by Early Start until the age of three and then you are transferred over to the school district. So this week we had to say goodbye to Graham's wonderful teachers. We are so appreciative of everything that they did to help him progress and we will really miss them.

Angela and Mary with Graham on his "Graduation" Day.

Consequently Graham will start a speech therapy preschool through the Campbell Union school district as soon as we think he is ready. He went to the classroom and did some testing over the last few weeks and Mary, the Speech Language Pathologist who runs the class, thinks he will do really well in their program. The only thing holding us back are some medical forms that need to be filled out and possibly Graham's separation anxiety which he is well on his way to overcoming. So I imagine that he will probably start preschool after Christmas.

Proof that his speech is improving:

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Graham is such a fun little boy. He loves to go to the park and he especially loves the swing, but it has been amazing to watch him get stronger and figure out how to climb up the rope ladder and muster the courage to go down the slide without me.

He is still obsessed with cars, trucks, trains, motorcycles, etc. He loves watching for the garbage truck and the mailman and if there is a school bus within his field of vision, he will find it. He finally saw the "Cars" movie this summer and it has become as precious to him as the Motab.


Watching "Cars" while playing with the residents of Radiator Springs.

Which brings me to Graham's continued love for music of all kinds. His repertoire of songs is quite impressive and he actually sings words more clearly than if he were saying them. He still loves to lead the music and prefers songs with a big finish. The Beatles are still a favorite as well and it's fun to hear him sing their songs as he plays with his cars.

Here he is enthusiastically directing the Motab during General Conference:


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And here's documentation of the birthday boy unveiling the car Grandma Janca got for him:


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Visiting Uncle Mike's fire station with his cousin, Timmy.






Wednesday, October 7, 2015

Pre-Birthday Thoughts

This is a difficult time of year for me. It is a beautiful, emotional roller-coaster that culminates in celebrating one of the hardest yet most essential days of my life: October 10, 2012.

For me Graham's birthday is an enormous cause for celebration. When I think about how far he has come or even the fact that he is here with us, I am overwhelmed with gratitude. Over the past few days, I've found myself tearing up as I watch him play, thinking to myself that if 3 years ago I could have gotten a glimpse of what our lives are like now, I could've spared myself all the nights I cried myself to sleep wondering if he would ever come home or if he would ever eat solid food, etc.

Conversely, there are so many emotions that I experienced while I was pregnant with Graham, on the day he was born, the days he had his surgeries, the day I was finally able to hold him, the first time I heard him cry, the countless times I had to shove an NG tube down his nose, dealing with insurance companies and so on that I haven't fully dealt with and don't know that I ever will, and they also come rushing back at the beginning of October.

I think about all the doctor's appointments I had to go to, the non-stress tests, the ultrasounds, the realization that I had to have a C-section and the time it took for me to wrap my head around the plan for Graham's birth. I still cry every time that I see someone give birth on a TV show or movie, especially when they get to hold their baby for the first time.

I remember all the doctors, nurses, OTs, PTs, respiratory therapists, surgeons, and other medical professionals that have helped make Graham what and who he is today. It makes me sad to know that they are some of the most important people in our lives, but we will never see most of them again.

I think about the fact that I am a Mother much like many of you are Mothers, but I am also a Heart Mom and because of that there are so many differences that sometimes I feel like I can't relate to other Moms. That is hard for me.

Planning ahead is almost impossible. I want to think about 6 months from now or 6 years from now, but with Graham there is so much uncertainty that for my own sanity I really only look a few months down the road. When I do try to think about what the next year will hold I realize that it is very possible that Graham will have his third surgery and the delightful bubble of normalcy we've been living in will have to burst as we are thrust back into the harsh reality of hospital life. This time around Graham will be more aware of our presence or lack thereof. He will be able to tell me if something hurts. He will get frustrated that he is stuck in bed. 

Now I hope I don't sound like I am complaining or throwing some kind of angsty teenage tantrum about how nobody understands me. Despite everything we have been through I can truly say that I love the chapter of my life that began when we found out about Graham's heart defect; I wouldn't trade what I've learned, the growth I've experienced, the faith I've gained or the love and support I've felt as a result of his diagnosis for anything.

There is nothing more dear to me than the absolute knowledge I have gained that my family is eternal; that no matter what happens in the future, Graham will always be my little boy and I will always be his Mama.

I can never fully express how lucky I am to have Jeremy as my partner through all of this. He is the sweetest Dad and the perfect husband for me. He is the only person who truly knows everything that I have been through with Graham and the last 3 years have cemented our relationship in such a way that can only come through loving and supporting each other no matter what life throws at you.

When Graham was in the hospital after his second surgery fighting to recover from RSV there were multiple occasions that I broke down on the way to work after spending the day at the hospital. I told Heavenly Father that I had finally reached my limit, it was just too hard and I couldn't take one more day like the one I was having and yet, the reassurance I needed always came and I knew that I wasn't alone in my sorrow and I didn't have to shoulder the burden on my own.

Even in the terrible moments when I sat, watching helplessly as teams of doctors and nurses fought to keep my son alive, preparing myself for the very real possibility that they might not succeed, I was able, within minutes after the conclusion of such an episode, to feel peace.

I have been blessed beyond comprehension and that in and of itself is an overwhelming thought, especially because I know that these blessings have not come solely because of things I have done, but so much of my happiness is owed to my family, friends and followers.

The roller coaster of life will go on after October 10th and we will take it as it comes, knowing that whatever 60-foot drops or corkscrews it has in store for us will all just be part of the ride.

Wednesday, January 7, 2015

The Year of Normal

I apologize that my blogposts are few and far between, but it seems funny to write a lot when we are just enjoying normal life, as wonderful as that is. That being said, I do have some great news to share.

The only medication that Graham takes is synthroid for hypothyroidism. When the doctors first noticed his low thyroid levels they explained that it is normal for the body to lower production of thyroid hormone when it is in distress or undergoing a major trauma, like multiple open-heart surgeries, etc. So they told us that his levels would eventually normalize and we would just have to follow-up with endocrine until they did. For the last few years we have been getting regular blood tests and meeting with Dr. Karen Huang at Kaiser every few months to check in. In September she suggested that we do a trial off of the mediation to see if it was still necessary. So we took Graham in for a blood test to serve as a baseline and then stopped the medication. I took Graham to see Dr. Huang on Monday and then we did his final blood test. We got the results today and everything is within the normal range! It's amazing how wonderful "normal" feels. No more meds, no more routine blood tests - life is good.

And as if that wasn't enough, we met with Graham's cardiologist in November for a routine ultrasound, echo, etc. and he said that everything looks great and he doesn't expect any surprises from Graham so we probably don't have to worry about his next surgery until after he is 3! Obviously we can't plan on anything but it looks like we get at least one more year of "normal" - life is great.

So this is the year of getting caught up developmentally, learning to talk, strengthening mouth muscles to decrease drooling, watching the garbage truck, eating pizza, going to the park, playing with friends and cousins and being blissfully normal.


Handsome boy in his Christmas sweater.


Jammin' on the couch.


Pure joy on Christmas morning. 

Sunday, November 2, 2014

Happy Halloween

Handing out candy at Uncle Chuck and Aunt Liz's house.
At the Ward Party

Graham kept it simple this year and used Grandma Walton's awesome firefighter costume. After he caught a glimpse of himself in the mirror, he decided he liked what he saw and so there were no issues with disrobing.

Unfortunately on Halloween Graham was a little under the weather (just a cold) so we kept it low-key. Our goal for next year is to get Graham to say, "Trick or Treat" instead of just staring at the people handing out candy.

Saturday, October 11, 2014

Graham is 2!

Graham turned 2 on Friday!

He started off the day running errands with Grandpa Walton, which included visiting Grandma at work.

Then we headed up to the San Francisco Zoo with Grandpa Kershisnik. Graham wasn't super impressed by most of the animals - a lot of them were asleep. But he was very excited to see the "brown bear" (grizzly), tigers, lions and monkeys.



After the zoo, we headed to Graham's favorite restaurant, Pizza My Heart, and grabbed some assorted cupcakes and some fresh Banana cake from Icing on the Cake. I wanted to get Graham some banana cake last year, but they were closed/under construction and as you might remember, he wasn't really interested in food.

Then it was back home to open presents and eat cake. It really was a wonderful day.

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 We also had a birthday celebration when we were in Utah last week. A lot of my family was there, but Uncle Sam, Aunt Brittany and Kenzie were able to come as well!

 
My Grandma Mary Ann (Janca) made the most amazing Cremkake (Norwegian creme cake). 

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Tuesday, October 7, 2014

I Am a Child of God



Graham loves music and recently he has been singing "I am a Child of God" a lot. During
General Conference this past weekend, the Mormon Tabernacle Choir sang a
beautiful rendition of this song. Unfortunately Graham was napping, but
I found a clip on lds.org and Graham has been watching it over and
over, singing along and conducting to his little heart's content.

The more I sing Primary songs to Graham and listen to the words, I realize how much depth there is to these simple tunes. Being a Mom is very rewarding, but it's hard sometimes. Graham still has a lot of catching up to do and sometimes I get caught up in his various therapies and forget to do little things like praying before we eat. Luckily Graham is good at reminding me. We taught him how to fold his arms and say "Amen" when we say prayers at bedtime and he likes to fold his arms and have me pray randomly throughout the day, but especially when he is in his highchair.

I used to think the words "Lead me, guide me, walk beside me, help me find the way, teach me all that I must do to live with Him someday" were a somewhat heavy reminder of all the things I need to do for Graham in order to be a "successful" parent, but in many ways he is leading, guiding and teaching me everyday.

I always get a little extra sentimental around his birthday and listening to this song helps me remember all the blessings, support and love we have received over the past few years as a result of all that we and our miraculous boy have gone through. It helps me recognize that we are not alone in anything we do, there is always someone waiting, heavenly or otherwise, to help us find the way. And it makes me even more thankful to have a little 2-year-old toddling around making messes, playing with cars, and singing sweet songs.

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Friday, August 15, 2014

A Few of Graham's Favorite Things

Growing up my family moved a lot, but the place we lived the longest was Kansas City, Kansas. Graham has not yet been, but there seems to be a piece of Kansas in his heart because his favorite song just happens to be the state song: Home on the Range.

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Graham's favorite toys are balls, "da", and cars, also "da". Needless to say, he enjoyed watching the NBA finals.

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Graham also loves to dance, and he has a small, but effective repertoire of moves.

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And finally here are some pics of Graham in his "G" hat, in his superhero helmet that his Dad made out of bristle blocks and riding the carousel at the Santa Cruz Boardwalk.