Jackson went in for surgery on Wednesday and today you wouldn't even know it! We seriously can't believe how fast he bounces back... The surgeries were successful and we are now on the road to recovery. Phew. One more down.
Today Jackson is 17 months and I just can't believe it! Time feels so slow in some ways and then vanishes so quickly in others. We are loving this season with our boy - he is so fun and his personality so vibrant! He absolutely LOVES people and he cracks us up! I find myself laughing regularly at his crazy antics.
The other day when I got him up, this is what I found:
Talk about bedhead! I still find myself laughing when I see it!
I also wanted to take the time to thank a couple amazing people who have given us incredible gifts. Gifts, not only thoughtful, but unbelievably personal and creative! These people are seriously talented!
First, I want to thank Vanessa of Beloved Jane - an incredibly talented artist and friend! She made me this gorgeous sterling silver necklace stamped with the following:
I can't even tell you how much I adore this necklace! Vanessa, I am amazed by the heart and creativity of your work. Thank you for giving me such a priceless gift. You can also find her here.
And it doesn't end there! Awhile back, I was reading my friend Emery's blog - this post to be exact. While reading I noticed an adorable blanket given to her sweet boy Myer. I loved it! So I looked up the company that made it - Admiral Road. I felt inspired by their sweet and creative designs and so I emailed them to let them know. A few weeks later I received this in the mail:
Admiral Road read our story and were touched by it and put a personalized blanket in the mail for Jackson. And it couldn't have been a more perfect choice! Jackson's favorite stuffed animal is his Curious George (he sleeps with it every night) and he absolutely ADORES monkeys! I put it up on his wall over his crib for now as he loves to look at it... What a beautiful, thoughtful gift. This blanket will be treasured for years to come.
I am constantly amazed by the generosity and grace displayed by people I come across. You inspire me. You move me. You overwhelm me. I want to be more like you.
I have been on a bit of a blogging hiatus. Between being sick, once with the stomach flu, then with a nasty respiratory virus, the words have just been sucked out of me.
We enjoyed our time in California - spent some quality time with family and good friends, hung out in some of our favorite Central Coast spots, celebrated my cousin's wedding, and even had our first overnight since Jackson was born (much needed)! We had a gift certificate for a night at the Cottage Inn in Pismo Beach and we were finally able to use it. We thoroughly enjoyed a mellow night away from our little man and were able to reconnect a bit (thanks Nana and Granddad)!
Someone takes after his Daddy a bit...
Jackson and Stew...
We've been settling back into our schedule since we got back to Austin and are enjoying getting to explore our new home a bit. Jackson is doing so well in therapy that he may only need occupational therapy and physical therapy for a couple more months! He is progressing rapidly and learning so much these days. Speech therapy will be ongoing till he is much older, due to being born with a cleft. But he is learning to sign and even has a couple words under his belt ("more" and "go"). He nods in response to questions, waves "goodbye", blows kisses and gives hugs upon request. He is getting more and more fun these days - he is so social and independent.
Jackson's most recent thing is that he is standing up by himself and learning to walk. In fact, he did both for the first time on the same day! Crazy enough we were able to catch it all on video...
And yes, I am a tiny bit embarrassed about my laugh in this video... Oh well.
Tomorrow, Jackson is scheduled for another surgery. Originally he was scheduled for surgery on May 18th, but he woke up with a fever of 102.7 and a nasty cough. We called in and they said to bring him in anyway, and they would determine what to do. Because of the cough, the anesthesiologist decided to postpone surgery. He was able to get his new Mic-Key button G-tube in (because it didn't require anesthesia), and we're loving the convenience of it. He is also now able to wear two-piece outfits instead of onesies all the time - a total luxury. Because the Mic-Key has already been put in, Jackson will be getting his inguinal hernias repaired and will be getting circumcised. We aren't entirely sure what the recovery will be like, but we have been told to expect a rough first week. This little guy has been through so many surgeries for his age, he's pretty tough, but it's still hard every time to hand him over... and then get him back in a totally different condition. It's hard not being able to explain to him what is about to happen and prepare him for how he'll feel when he gets out.
We have so appreciated the loving support we have received from so many of you. And we are so grateful to those of you who have supported us through Jackson's Smile - you are truly making a difference in our life and in the lives of other children like Jackson.
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...
