So... yeah. I've been tagged. Twice. By Emery. And Anne.
Here are the rules: Take a photo of yourself as soon as you see you've been tagged. You're not allowed to primp or "aquanet" or grab your nearest BumpIt (as stated by Emery).
Now you know what I really look like at the end of the day... Sweet.
A lot has been happening in our lives lately. Between appointments, tests, more appointments and therapy, Jackson has a pretty full schedule.
In the past few weeks, we have seen Jackson's geneticist, ENT, GI, new pediatrician and therapists. We have also run a number of different tests, primarily in regards to genetics and problems related to his syndrome. Some of these tests are a full abdomen ultrasound, chest and spine x-rays, blood and urine samples, carrier blood test (for me), and chromosome microarray genetics blood tests for Daniel and I. Phew. Since we found out about Jackson's syndrome, there have been a number of tests that have needed to be run, some even 3-4 times per year, to monitor Jackson's kidneys and other risk factors associated with the syndrome. None of these tests have been run until now, under the care of Dell Children's Medical Center. Just to explain a bit about why these tests are being run, I'll give a little bit of the rundown:
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.
In other related news, Jackson has another surgery date set. He saw his new GI doctor, and will be getting the G-tube he currently has switched out to a Mic-Key (skin-level device). Also, if you remember from last year, Jackson has two inguinal hernias. He had to go to the emergency room last year, and thankfully, the surgeon on call was able to push it back in. But we've known since then that he would need to get them repaired at some point. Lastly, Jackson was supposed to be circumcised in the NICU at Sierra Vista, but for a number of reasons, it didn't happen. Now, a few complications have surfaced, and because of this, he will be getting circumcised. These three procedures are set to take place May 18th.
Jackson is really progressing. He is crawling like a mad man, pulling himself up onto everything, walking along furniture, and using his walker regularly around the house and in the backyard. For example:
Jackson sees three therapists currently at Kid Therapy. Tuesdays he sees his occupational therapist, Cara. Thursdays he sees his physical therapist, Sara. And Fridays he sees his speech therapist, Amy. While it makes for a busy schedule, we so appreciate what they are doing for our little boy.
Or big boy... Jackson weighs nearly 30 pounds and is 32 inches tall. Everywhere we go, people constantly tell me what a big boy he is. I had this conversation with a nurse the other day:
Nurse: How old is he? Me: 15 months. Nurse: Wow. He is a big boy. Me: Yeah, I know. Nurse: But he's not chubby at all. He's all muscle!
That's our boy.
We fly out to California tomorrow. We'll be there for three weeks. My cousin is getting married on May 2nd, so we planned a trip around her wedding. It works out well because Daniel can work from the office there, so he doesn't have to miss any work. We are also looking forward to meeting the new additions! Our sweet friends, Darren and Jessie, just welcomed their son, Reuben Oliver, into their family. And our other friends, Ryan and Cole, are yet awaiting the arrival of their baby boy.
For those of you keeping up with Jackson's Smile, we just wanted to share how much we appreciate your support. Thank you to Jose Villa, Joel Flory, Riccis Valladares, Sarah Rhoads, and Gabe McClintock for their incredible and generous contributions. And thank you to all of you who have purchased a photograph in support of us and other children like Jackson.
Jackson's personality is coming alive more and more... This boy really knows how to put a smile on my face. Even after hours of tests, and being poked and maneuvered, I am amazed that he can still find a smile. He reminds me that no matter what we face from day to day, hope is only a smile away.
Sorry it has been so long... Honestly, I have been so tired and haven't had the words in me. Between adjusting to Texas life, Jackson's numerous doctors appointments, not to mention him being sick with 101.5 fevers for 4 days, life has just gotten the better of me.
We still have a lot to do, but here are a few pics of our house:
We are absolutely loving the space!
Jackson had his first Craniofacial Team appointment at Dell Children's on Monday, February 23rd and we couldn't be happier! We finally feel that Jackson is in good hands. There have been many unknowns up to this point with his syndrome diagnosis and he is beginning to get the follow up we have been wanting. And it's such a relief that all his appointments are right here in Austin.
We saw the ENT doctor this morning. Jackson will most likely need a new tube in his left ear as it has moved out of position thus causing some hearing issues. He screamed the entire time the doctor was trying to look in his ears, so much so that he started to hyperventilate. When the doctor was finished, he just glared at him in between catching his breath and whimpering. I feel bad for him; he's got to be so sick of people messing with him. When we drove to the appointment, it was sunny outside... By the time we were leaving, it was POURING! I wasn't at all prepared, so I snuggled Jackson up to me and made a run for the car. Needless to say, we both got soaked. Now it's sunny and 80 degrees outside. Go figure. The weather here is totally schizophrenic...
Monday we see the Genetics doctor. Wednesday we see the GI doctor. And the following week we see Jackson's new pediatrician. Phew.
Jackson is crawling all over the place now and pulling himself up onto things. A couple weeks ago, Daniel's sister Sarah let us borrow a few Baby Einstein DVDs. I was hesitant at first, but put one in. Jackson sat in front of it the whole time and I have never seen him laugh so hard (except when we tickle him)! It takes everything in me not to burst out laughing! It seriously is so cute. But then he figured out how to turn on the TV - a big no no. He'll turn it on and then clap and get excited. Anyone have tips for not laughing at your kids when they disobey? It just kills me.
We have a swing in the backyard that Jackson loves! It was pretty hot out the other day so Jackson decided to hide under his sheriff cowboy hat...
One of the side effects of Jackson's syndrome and all the medical issues he has dealt with since birth are the overwhelming medical bills. We have been inundated with medical bills for over a year now. Without insurance and the generous financial gifts we have received from others throughout this past year, Jackson's medical expenses would total over one million dollars to date.
Daniel and I have tried to stay positive throughout this past year, all the while getting deeper and deeper in debt because of all the medical care Jackson's condition necessitates. As some of you may remember, we moved in with my parents last April so we could put a dent in some of the debt we had accrued since Jackson's birth, which we were able to do. However, no matter how much we are able to pay off, it seems there is always another bill coming in. We just can't seem to stay afloat. Because of this, one of the primary reasons for moving to Texas was the lower cost of living. We just couldn't keep up living on the Central Coast, regardless of how much we loved living in such a beautiful place.
One of our good friends, Cameron Ingalls, is a renowned photographer. He has known of our financial situation, and together with his wife, Anna, came up with Jackson's Smile. Jackson's Smile is a coalition of photographic artists dedicated to giving Jackson, and others like him*, some of their most precious resources; their time, money, and talent. Each month beautiful photographs will be featured, donated by incredible photographers, to raise money to offset Jackson's medical bills; "to give Jackson the gift of his smile."
We are so grateful for our friends, Cameron and Anna. And for all of you who have been our support system over the past year or so.
