Halloween 2009

Our little firefighter...






We're getting ready for a night of trick-or-treating, enjoying the company of new friends, then catching the end of the UT game as they take on the Oklahoma State Cowboys! Happy Halloween!

Little Adventurer

Our little man is a little adventurer. He loves the outdoors, loves exploring things, and would go off discovering things on his own if it weren't for the careful watch of his exhausted Mama.

Today I asked if he wanted to come along to drop off the Netflix in the mailbox. Of course he did! He's pretty good about holding my hand until I let him run on his own for a bit. And he's pretty good about knowing not to go into the street on his own. Today, however, his curiosity got the better of him. When we got back from the mailbox, Jackson decided he didn't want to come back inside. So, thinking that if I said goodbye and started closing the door, he would (as usual) start crying and bang on the door until I opened it. Not today. I quietly opened the door up to see what he was doing. He had already run out into the middle of the street off on his own adventure (thankfully, we have a pretty safe street)! I have no idea what was going on in his mind as he wandered into the great unknown... Where did he think he was going? When would he have stopped? Or would he? I often wonder what goes on in the mind of my little adventurer.

Needless to say, I scooped him up and brought him right inside, put him in time out and then gave him a good talking to. Don't know if it worked. I'm pretty sure it'll happen again. Probably many more times before he learns to listen to his Mama. I, on the other hand, will not be quite so trusting of him in the meantime.

A glimpse of the laughter and life Jackson brings to our house:

Tickling Jackson from Halle Whittington on Vimeo.

We're back!

Sorry it has been so long... 3 months to be more exact! Sheesh. Sometimes life just gets the better of me. And with so much going on, tons of things that I'm sorting through, I just haven't had the energy or focus to write about our life as of late.

So many changes... The best news is that Jackson got his G-tube removed today! Yay! This has been a long time coming. He's finally drinking on his own and loving it! We put Daniel on a flight to California then headed over to the surgery center at 9 a.m. this morning. The doctor took it out, put an enormous bandage on it and gave us a follow-up appointment for October 29th. I guess they give it some time to see if the hole will heal up on its own prior to repairing it surgically. So we'll see how it goes. Supposedly, it'll leak a lot for the first couple days then gradually get better. We're just so happy to be done with this season and ready to move on to new things.

Daniel will be in San Luis Obispo for the next 12 days, playing lots of shows and celebrating the wedding of one of our good friends! Congrats Tim and Annie!

I'll be here with my boy. News on my end is that I just took a part-time job working for West Elm in downtown Austin. It's been a lot of fun so far and I'm making some good friends! It's been good for me to get out and we could really use the bit of extra cash flow, if you know what I mean.

Jackson just gets more and more fun... He has the biggest appetite that I've ever seen in a kid his age! For example, one morning he ate two pancakes, a half banana, handful of blueberries, a kolache and a cup of milk. Goodness. He most definitely eats more than me! He constantly has a couple cars in his hands and drives them all over our house. He is still extremely social! He just can't get enough of people. But he's also VERY independent and focused. I am loving seeing more and more of his personality. He is such a happy kid... always has a smile on his face! I just adore him.

As far as me, I've been on quite a journey the past few months. I can talk about that more later, but I am making some good and necessary changes. Jackson and I will be in California to visit from November 3-10. I'm looking forward to catching up with some familiar faces and spending time in some of my favorite coastal spots.

Our camera is still out of commission, so hopefully we'll have some pics to post soon! Till then...

4th of July/Other News

We had a great 4th! It started out with the annual Maple Run Neighborhood Parade... We joined in the festivities along with family and friends.




A fire truck led the parade and stuck around afterward so the kiddos could check it out. Jackson LOVED it! He's a big fan of any type of truck - here's the evidence!



We then had a great BBQ with Daniel's family, complete with hamburgers, hot dogs, corn on the cob, fruit salad... you get the idea. We were going to end the day with fireworks, however, Daniel wasn't feeling great and yesterday found out he has bronchitis - sweet. Oh well. We'll try again next year.

----------
We got a call this morning from Jackson's geneticist. As you may remember, Jackson has routine abdomen ultrasounds done every 3 months. He had the first one at the end of March, then he had one recently in June. This recent one showed unusual growth in a few places, including his lymph nodes and spleen. We are going in to see the oncologist this afternoon, since tumor growth is highly associated with SGBS. Please keep us in your thoughts and prayers.

Progress

We almost have a walker on our hands...

Jackson Walking from Halle Whittington on Vimeo.

Genetics

Daniel and I have been wanting to update you on recent news. We have been undergoing many different types of tests related to Jackson's syndrome. If you have been following our blog, you may have noticed the numerous tests that have been run in the past few months. Here's just a few of those tests:

Abdomen Ultrasound - to check for kidney tumors and/or Wilms' Tumor
Chest X-Ray - to check for heart abnormalities associated with SGBS
Spine X-Ray - to determine the level of scoliosis Jackson has
Urine Sample - to check for neuroblastoma
Blood Sample - to check for gonadoblastoma or hepatocellular carcinoma
Carrier Testing (Halle) - SGBS is X-linked recessive inherited with a slight possibility of what's called de novo mutation. This will help us determine exactly how Jackson got this syndrome.
Chromosome Microarray Testing - There was a slight deletion of chromosome 2 in Jackson's DNA. Daniel and I are now being tested to see if this deletion was inherited or not.

(If any of you are interested in more information specifically related to SGBS, this article has been the most helpful to us thus far.)

On Monday, June 22nd, we went in to see Jackson's geneticist to go over the results of these tests. Here are the significant results that were found:

Abdomen Ultrasound - Jackson has a duplex left kidney. His geneticist has referred him to a local children's urologist.
Spine X-Ray - Jackson has what is called lumbar kyphosis. He is being referred to a local pediatric orthopedics doctor.

There were some other elevated results in the blood and urine samples, including the AFP, or Tumor Marker. He will be tested regularly (every 3-4 months) in order to monitor and track these levels, and catch any possible tumor growth early.

We also ran a couple of other tests involving genetics. Daniel and I both had the Chromosome Microarray testing done because Jackson showed a slight deletion on chromosome 2. Neither of us had this same deletion.

Finally, I went through Carrier testing for Simpson Golabi Behmel Syndrome (SGBS). As previously stated, SGBS is X-linked recessive inherited with a slight possibility of what's called de novo mutation. Ever since we found out about Jackson's diagnosis, we have believed that I was most likely a carrier for this syndrome, as that made the most sense to us. If you remember, on Jackson's 1st birthday I wrote:

Simpson Golabi Behmel Syndrome (SGBS) is an X-recessive syndrome. While I'm not entirely sure what this means, I know I'm the carrier of it. And this carries with it a heavy weight. I live each day knowing I gave my son a syndrome he has to live with the rest of his life, however short or long that life is. And I also live knowing he may be all I get, my one chance at biological children. I have a 25% chance of giving any other children this syndrome. I don't know if I can logically make that decision. We're not at that point yet, and honestly, it's too much for me to bear at this time.

On Monday, the geneticist went over my carrier testing results. She practically said it in passing. Daniel completely missed it, and I was staring at the piece of paper in disbelief: SUMMARY OF RESULTS: NEGATIVE. "Daniel," I said, "I'm not a carrier."

This began a week of trying to process this news, and reverse our thinking. I'm not entirely sure where we're at now. We're still a bit mind boggled.

I remember when I heard the news, I wanted to break down crying. The odds of us having a baby with SGBS are rare, extremely rare even. SGBS is classified as a very rare syndrome, with only 120 known cases in the world. But having a baby with SGBS as a result of a de novo mutation, even more rare. In that moment, I remember thinking what an incredible gift we have been given. What a beautiful, remarkable little boy. We have as much chance of having a child with SGBS as anyone in the world (without the gene). And for some reason, Jackson was given to us.

This also opens up the possibility of having other children. For nearly 15 months, we have been wondering at our ability to have other children, and other children with SGBS. We have considered IVF (In Vitro Fertilization) coupled with PGD (Preimplantation Genetic Diagnosis). SGBS is on the list of diseases that can be tested. That is no longer an issue.

As far as where we are now... We're, honestly, still attempting to wrap our heads around this news. For so long, we have believed one thing. We're not quite sure what to do with a completely different thing.

Jackson is an incredible little boy. So sweet. So fun. So happy. So loving. He's adventurous and smart and makes friends easier than I do. Yesterday I found myself, sitting with my hands covering my face, crying. In a few moments, I felt a hand on my shoulder. I looked up and there was Jackson, standing in front of me. I said, "Jackson, Mommy's sad." He then wrapped me in a bear hug. That's the perfectly wonderful little boy we have.

Thank you for sharing life with us.

Happy Father's Day!

To the best possible Dad there could ever be for Jackson...




We love you forever.