Wow…..it’s been a while since we’ve posted…..and a lot has happened!
Let me recap:
For starters, and for a number of reasons, Cristina, Maria Isabella and I had to relocate to Virginia Beach where this little family is starting it’s new life. While relocating to Virginia was always something we were serious about doing, we never expected it to happen so fast…so we literally went from Camden, NJ to New York City to Virginia Beach, all within a 3-4 week period. Although it was tough to leave the city….and the Archdiocese….we know that this is where God wants us and He has opened doors for work and for our current home…..we can’t complain!
One of the reasons we had to move was to find a more stable job. Don’t get me wrong, leaving for work from 8am-5pm has been quite the transition for all of us, we were so blessed these past 2 years. This time last year, we were preparing for our wedding and both Cristina and I were blessed to work in the same building together! To add to that, once Cristina and Maria Isabella had their initial surgeries and we were relocated to the Ronald McDonald House in Camden, NJ, I was able to work remotely…so we were together every day for 4 months! Now my poor wife has had to leave her family to move to a city where she’ll need to get her driver’s license and learn how to navigate the streets! But through it all, we know that Our Lord is doing something bigger than we can see…..and though the change has been tough, Cristina is becoming one tough momma.
Maria Isabella, as you can see, is doing very well for her age. She’s our little hero and each day she proves to be even tougher than what we had previously thought. One of the reasons had to move was because of the Children’s Hospital where Bella would receive her initial care. While New York City and Philadelphia offered great programs and state-of-the-art facilities, it would have been too much for us to have to travel to either one on a weekly basis. Providentially, the Children’s Hospital of the King’s Daughters in Norfolk, VA, is close by and has a great team for their Spina Bifida program. Not only that but Bella has already had to see so many doctors in the past few months that we were at the hospital around 2-3 times a week! Thank God for their hard work and love for the children that they serve!
As for details, there a few things that we would ask prayers for.
One of the biggest concerns we had, and also one of the biggest reasons we discerned the In-Utero surgery, was the benefits it showed in reducing the need for a shunt. While a shunt isn’t the end-of-the-world, we are relieved to know that up until this point, Maria Isabella’s fluids are stable and it seems that she will avoid the need for a shunt.
With Spina Bifida – Myelomeningocele, especially where Bella’s spine was exposed (in between L1-L5), the bladder and kidneys are usually the first to be effected. As part of the nerve damage that was done before we were even aware of her Spina Bifida, her bladder is abnormally shaped and seems to have some leakage…while we are blessed that Maria Isabella is able to urinate on her own for now, she still leaves a little too much urine in her bladder. As we saw in a highly specialized Urodynamics test that was done last week, there is some slight damage and irritation going on from that leftover urine towards one of her kidneys. The orders we have right now are to continue giving her antibiotics nightly to prevent infection and in January, another test will be done to find out if a)the bladder repairs itself or b)if she will need to begin using a catheter a few times a day in order to fully empty her bladder. Only time will tell….please keep this in your prayers!
The other prayer that we beg for is the movement in her legs. While she seems to wiggle her feet and sometimes ‘lift’ her legs, there isn’t much movement going on. Luckily, here in Virginia Beach there is a strong Early Intervention Program with much experience with children with Spina Bifida, so Maria Isabella has already gotten her first few visits from their team. Here’s what she’s got going :
The reality is that we won’t know much about her ability to walk until she gets a little older….but she has so many who are rooting for her and are dedicated to helping her get as strong as she can! What peace we have in knowing that in the end, He is in charge! Whatever His Will may be, we pray for the strength to be the best parents that Maria Isabella could possibly have. What a blessing it is to have such supportive family and friends!
Please keep us in your prayers….now that we’re back in action, we will update with news as the next few months pass!
Here are some of our latest family pics:
She looks just like her mother when she wakes up in the morning….