Jackson and I spent the past week in California visiting with friends and family. We loved seeing familiar spots and friendly faces. We were even able to make it to the gallery opening for the Jackson's Smile Art Show Benefit. We had such a wonderful time seeing friends and making new friends! Thank you to all who came to support Jackson and for the generous donations. We are slowly trudging through Jackson's medical debt but we know we are not doing it alone. We can't thank you enough for your loving support.
Unfortunately, Sunday night, while we were still in California, Jackson started to run a fever. We have spent the past 4 days trying to figure out what was going on since his fever has been consistently around 103.5. Yesterday, we spent 2.5 hours at the doctor's office running tests... Flu test came back negative. Blood test showed elevated white blood cell count. Following a chest x-ray and urine test, it appeared Jackson was on the onset of bacterial pneumonia coupled with conjunctivitis. So he's now on antibiotics and eye drops and we're hanging low.
To end on a happier note... Just wanted to reiterate how lovely it was to see good friends...
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!
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:
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...
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.
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.
There's really no better way to describe him. Jackson could eat, sleep and breathe people. It makes it easy on us when we want to go out because he never gets fussy. He is constantly entertained by all the people; people walking their dogs, people talking, people eating. It doesn't matter. I have a really hard time keeping him entertained during the day since it's just me and him at home. But when we're out, he's in heaven. He loves his stroller. He loves his car seat. I have to be careful not to say "bye bye" too early, or he will start heading for the door and pound on it until we leave. I have to have everything in hand before I even think of uttering the words.
So, yes, he is wildly social. Combine that with his explorer spirit, and quirky personality; he definitely keeps us on our toes!
The other day while I was sitting in the waiting room of Kid Therapy, Jackson's speech therapist approached me saying just how social he is; he waves and says hi to all the kids, is always smiling, and is the highlight of her day. I can't tell you how much I love to hear things like that! Then later, his occupational therapist told me the same thing, and shared a story with me of when Jackson was playing in the gym there. Another little boy climbed up a ramp and Jackson clapped for him when he got to the top, then climbed up the ramp himself! She said how much the other kids and therapists just love him and what a fun, sweet boy he is.
It has been such a rough road so far, hearing these things about Jackson bring the life back to me. It's as if every time I hear it, my lungs fill with air, my heart beats a little bit faster and my eyes see a little more clearly. The clouds break and life feels worth living again.
I love that he loves people. I love that he lights up when other kids come into the room. I love that he makes me laugh about a hundred times a day. I love that he makes himself laugh just as much. I love my boy.
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...
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.
This is huge. It has been a long time coming. Jackson is finally crawling! We have been so excited and he is enjoying new levels of independence.
So I have attempted to film it. The story behind the two videos...
Jackson loves anything technological and anything belonging to anyone but himself, meaning cell phones, computers and cameras specifically. So I tried to video him crawling the first time and soon discovered his crawling was motivated by his desire for the camera. He worked so hard to get to it and then Mommy wouldn't let him have it. Such a mean Mommy. Thus this first video:
Later on, Daddy was encouraging him to crawl, so I tried to capture it yet again. Needless to say, it was a bit dark in the room. I hope you can catch the gymnastics Jackson throws in there. It's pretty classic.
We have been crazy busy packing, loading, traveling, unloading, and unpacking... We are mostly settled in now and are attempting a few minor updates to the house. For now, here's what it looks like from the outside:
For those of you who have followed our story, you may have noticed the running theme of one shattered dream after another. I'm not sure if any of you can relate. I think our story is not exactly the norm.
Beginning with the initial shock during our first ultrasound (at 12 weeks), there was found to be a nuchal translucency, at which point we had to determine whether or not to find out what that meant. Emotions raced inside me, every fear I've ever encountered looked me in the eye. We underwent the CVS procedure to find out what the cause of this nuchal transclucency was. Our doctors said it was most likely that our baby would either have Down Syndrome or Turner Syndrome, and there was a good chance the baby could die in utero. The results came back telling us we had a completely healthy baby boy; no syndromes were discovered. We were much relieved and encouraged.
Fast forward 8 weeks to our 20 week ultrasound, typically an exciting time for new parents. We were happily expecting to see our baby boy, his tiny fingers, toes, hands, feet... Somewhere in the middle of the ultrasound, the doctor appeared concerned and began looking more intensely at our baby's face. Finally, after what felt like hours, he told us what he saw. A bilateral cleft lip and palate. My heart sank. I couldn't hold the tears back. Our boy had a cleft, and the most severe kind.
This began months of trying to process this news. I researched all I could, reading books, articles, pamphlets, trying to wrap my mind and heart around our son's condition. However, the ache never seemed to go away. With the news of every healthy pregnancy to the arrival of every 'perfect' newborn, my heart would once again revisit its pain. I was never mad at anyone for having a healthy baby. I never wished them the same kind of pain I was encountering. I was just lost, confused, grieving over and over the loss of MY perfect baby, the one I had always dreamed would be mine someday.
I have had to give up many dreams. The dream of natural childbirth. The dream of cradling my baby when he was first born. The dream of breastfeeding. Many, many dreams big and small have been ripped from my grasp, pried out from my fingertips and have drifted away to Neverland as I have stood helplessly watching them fade into the distance.
Our son spent his first five weeks in the NICU. I can't tell you how many trips I made to and from the hospital during that time. Sometimes they let me touch him, sometimes kiss his sweet face, sometimes hold him between the tests they were running on him. I often sat outside his bed as he lie underneath the bilirubin lights since he was so jaundiced, holding his tiny fingers. I remember the first time they allowed me to hold him skin to skin, his little body on my chest. He fell asleep on me. And when they had to take him away, he cried and cried and cried. I remember tears filling my eyes as the nurse put him back in his bed.
They ran so many tests on him during that time. There were a number of other anomalies they had found and the doctors were avidly searching for an answer. With every possible test, there was a possible diagnosis. Daniel had to finally ask the doctors to only report to us concrete findings, no more "hypotheticals", as it was too much for my mind and heart to handle. I ached with every possible diagnosis.
We finally were able to take him home. We were so relieved... until the reality hit. We tried every bottle possible and no matter what we tried, our baby wasn't able to take more than an ounce down at a given time, most of the time he didn't make it that far. So we learned how to tube feed him, sometimes we could leave the tube down, sometimes we had to put it down every feeding. The older he got, the more challenging feeding was. Sometimes I still get a bit jealous when I watch a baby take a bottle or breastfeed.
I took my baby in for his 3 month check-up with Dr. Bravo on April 7th. It was then that we received the news that he has an extremely rare syndrome - Simpson Golabi Behmel Syndrome (SGBS). There are currently less than 120 known cases of this syndrome. It often goes undiagnosed as it can be mild to severe in form. The more severe cases are the most studied. In most of the severe cases babies with Simpson Golabi Behmel Syndrome (SGBS) die prior to reaching two years of age, most often from heart failure or kidney tumors. We still have yet to find out the extent of what we're dealing with. My heart aches most days with the unknown.
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.
People say "time heals all wounds." I beg to differ. Time simply passes. I think it's what we do with our time that either helps us, heals us or keeps us stuck where we are. My dreams have been shattered, my hopes dashed upon rocks, my heart broken open and spilled out, emptying itself drop by drop as I walk through each day. But I want to live. I want to give. I want to love. So while I may be broken and you may see my flaws as if in broad daylight... While I may live each day in uncertainty and you may question whether I have any direction... While some days I wake up and can barely get myself out of bed and you may wonder if I have what it takes... I won't stop. I won't give up. I won't sit by and watch myself wither away. I see with eyes wide open. I feel with arms wide open. I ache with a heart that is familiar with pain. And I'll love with everything I have.
My baby turns one tomorrow. My broken baby is a whole year old. I love you, Jackson.
In early December, on a lovely Saturday evening, we headed out with the Caldwells to Holloway's Christmas Trees! Daniel and I have made this a tradition since we were married in 2005, but this was Jackson's 1st Christmas Tree excursion. As you can tell, we had loads of fun!
Roasting marshmallows...
Riding in wagons... Driving tractors... All by ourselves... (sshhh... don't tell him I'm still holding on!)
And came back with a beautiful tree!
Jackson even had his very own ornament!
We enjoyed lovely Christmas parties at the homes of the Siems and Caldwells - thank you! And even a caroling party at my cousin's house and neighborhood! There's a bit of a funny (and a bit humiliating) story with that one... Well, let's just say I felt so confident we were at my cousin's home, I walked right on in! Only to discover that their house was a few doors down... I apologized profusely and wished them a Merry Christmas! Thankfully, they were very gracious. Oh well...
We spent Christmas Eve with my family - my Mom has a lovely tradition and makes delicious "Christmas Eve Soup" every year! I'll have to carry on your tradition in Texas, Mom!
GeeGee Wright and Nana
Great Grandpa Trine
And then we enjoyed Christmas morning together as a family - Jackson's 1st Christmas! We kept it simple this year and bought Jackson only one present along with a few treats in his stocking!
It's a...
New Tonka truck!
As you can see, he loved the paper more than the present!
We rang in the New Year with the Caldwells and the Barkers! Happy 2009! Only a couple days till Jackson is 1!!!
