Here we are… 17 months in to our journey as a family of 4 (okay, that still feels weird to say).
A lot has changed for our family. Too much for me to write in one blog post. As most of you know we picked up our San Diego roots and moved our family to Austin Texas last October.
It’s been a hard move, having left our family and friends and our “normal” life in California, but here we are y’all!
If you have followed our story, that started nearly two years ago, you know that we have had quite the journey. Finding out early on that our pregnancy was very high risk, a 64 day hospital stay for myself, and an 80 day NICU stay for the girls, we have overcome and survived a lot more than most… and here we are, on to our next chapter.
I’m not even sure where to start so please bare with me.
When we moved here in October we began getting established with our new doctors and specialist. The girls having been preemies, are accustomed to extra appointments, therapy and more, and things have been no different here in TX.
That is until December.
The doctors here picked up on a couple things that didn’t “sit right” with them, in regards to Ashlyn. I will add that these things never seemed “right” to Jeremy or I either, but in good faith of our medical care we were always told to “wait it out”, or “she was a preemie, and she had a rough start” (incase you don’t already know Ashlyn was diagnosed with Goldenhar syndrome back in September of last year). But that wasn’t their concern…
You see Ashlyn has been delayed significantly with her mobility and skills, but this went beyond her being a preemie. Our medical teams decided to do a full body MRI, CT and XRAYS on her. On January 21st she went under general anesthesia and had all these scans performed.
Within a week we were sitting in the Pediatric Neurosurgeons office, anxiously awaiting the results. It was at that time we found out she has whats called Sacral Agenisis, also commonly known as Caudal Regression Syndrome. This means she was born without portions of her spine. She is completely missing her sacrum and coccyx (also known as your tailbone) Her spine stops, and has malformation atL5. Because of this her spinal cord has been severely compromised. Without going in to a bunch of medical jargon this causes her to have other, associated lifelong disabilities.
At this point we are really unsure if Ashlyn will ever be capable of walking unassisted. We speak to doctors who are very optimistic that she we will, while other doctors are sure that she will not. In my heart I will never lose hope that she will.
To provide the best chance of independent mobility for our child we are doing every thing in our power to give her a fighting chance. In fact tomorrow we will be picking up her leg braces, and on March 1st she will be sized for her walker. She wants to run, and chase her sissy around and I want her to have the freedom and mobility she so badly longs for.
We made the decision today that Ashlyn will begin attending the “Spina Bifida Clinic” at Dell children’s hospital, here in Austin. This will give her the opportunity to be seen by a panel of specialist whom will assist us in this journey and her care plan. The reason for her attending this clinic is that her symptoms and disabilities are very very similar to that of a child with Spina Bifida.
As with anything, only time will tell how things go.
As a family we have made the decision that I will continue to stay home with the girls, and take Ash to her appointments and therapy, and work with her in strengthening her legs and core.
I know it may seem natural to say “Im sorry”, about this situation, but please understand there is nothing to be sorry about. Ashlyn is absolutely perfect. You may or may not see that, and thats OK. If you have ever had the pleasure of knowing her, she has already stolen your heart with her sparkling eyes, or infectious smile. I am honored to be her mom, and I am up for and willing to take on this “challenge”, she is my child, my everything and my reason for living.
Ill be updating the blog more regularly so that our family and friends can stay up to date with whats going on.
I love you all, and I thank you for all the continued love and support we have received throughout this entire journey!