EEG moments + preliminary results

“I have made you. I will carry you; I will sustain you and I will rescue you.” ~Isaiah 46:4

A month ago I didn’t quite imagine how many medical moments we’d be going through this month and in the week ahead with our baby boy. We’ve officially went through all the tests he needed to undergo before his surgery next week. Yesterday Chance underwent a 24 hour EEG study after some concerns arose from his sleep study that he might be having seizures. This news came as a shock to us all…and just a few days later during aqua therapy his therapist noticed a seizure like movement in his leg during his therapy session. The very next day we made an appointment to meet with his neurologist for the first time. We agreed that we needed to be proactive and monitor him more closely to see what was going on in his little head. For the past two weeks since we met with his neurologist we kept a positive outlook on things – with the hopes that these tests would just be one more busy thing in our schedule but would help give us answers…and prayed that they would rule out the concerns of seizures. Unfortunately, the worries are far from gone.

Chance did amazing yesterday, 26 total wires plastered to his head and then having his head wrapped to keep him from prying the wires off his head. The wires annoyed us both, but we managed. He played. I managed to be quite productive in between his whiny moments of frustration of having the wires connected to his head. During the tests we were followed by a video camera that will be used by his neurologist to help analyze the EEG test results.

Unfortunately the EEG did not rule out the concerns that his doctor has. We will not receive the official full report until mid week next week because the doctor still will need to analyze things more closely but we were called today and told that he had enough abnormal and consistent EEG activities that they want to begin him on anti-seizure medication. My heart has certainly been a bit heavy today…thinking about how much we prayed not to have another worry…but we do. It’s too soon to know just how much all this may be affecting him but the concern is that if he is not medicated that the EEG activity could cause a seizure. The EEG abnormal activity is happening in the temporal area, which is a totally different part of his brain than where he’s having the chiari issues. So they don’t think there’s a connection, but we’re reassured that his doctors are working closely together and will continue to help give him the best care to help see him through whatever challenges arise.

Right now we’re trying not to allow ourselves to worry too much…he’s begun medication today and we’re reassured that will help us prevent seizures. So we’re going to try to let go of all the worries…and just trust in the Big Man that he’ll take care of our baby boy through every trial he brings his way. We’re going to spend the next few days giving him lots of love and admiring all those amazing smiles that lift our spirits.

Baby boy…we love you. Never forget that you are amazing.

Bella’s baby brother

 

This summer I had the opportunity to photograph fellow designer, and also a colleague of mine’s son, Daniel. Two years ago I photographed Nicole’s daughter Bella…and she was just as precious as could be. I suspected her brother might be just as dreamy to spend some time with…and he was. We had some fun this summer capturing a few of Daniel’s newborn moments…and I couldn’t help but capture moments with my beautiful little friend Bella…she’s now two…and has the most stunning eyes. I think you all will really enjoy the precious moments I spent with their family. Nicole I hope you and your family enjoy all the moments we spent together…thank you for trusting me again with your amazing babies…they sure are pretty darn awesome. Best wishes to you and your family!

more updates…

I know many of you are waiting to hear the updates on Chance after all the news we’ve shared recently…but I can’t help but pause and instead start by sharing a photo of all three of our babies. This week marked the start of a new school year for the kids. Hope began middle school, Jaylen started kindergarten, and Chance spent most of his days missing his brother and sister. We’re still getting use to the new routine, but so far things are going well. The kids seem really excited about school this year and though Chance misses them the moment they leave…he is incredibly cute and so darn excited the moment they arrive home. Yes, the start of the school year just reminds me once again just how fast these kids are growing!

I’ve been feeling a bit under the weather myself part of this week and haven’t taken too many photos of the kids since the day they started school, aside from the silly iPhone moments in between finding a way to rest and preparing for a new semester…surely his smile helps me share his latest update.

He’s in good spirits. We anticipate the next two weeks will be busy for us. As I begin teaching a new semester, on August 29th he’ll undergo a 24 EEG test. We’ve been told not to worry, as of right now, the hopes are to just monitor his EEG activity to see if he is having any seizures after his sleep study indicated a possible seizure activity and his aqua therapist had a similar concern about seizure like movements during his aqua therapy two weeks ago. Seizures can happen to kids with spina bifida, so we do understand it’s a possibility…but we’re going to keep praying that this study will just rule out this concern because right now we really don’t want additional concerns to worry about.

This week we also received official confirmation of his next surgery. After the last two updates I shared, I could sense all the concerns would lead to another surgery. I prayed and prayed that maybe we could avoid it – but the concerns shared in the last two updates (last two updates if you missed them: one & two) were enough for us to understand what we’d have ahead. The tests didn’t eliminate the concerns I’ve shared about his chiari malformation, they just helped us know that his symptoms weren’t so severe that we would have to have him undergo an emergency surgery. Thankfully this has given us some time to prepare. I’m not so sure we’ll ever be ready to have him undergo a surgery…but we at least are able to get the kids back into a school routine and make plans for the moments we have ahead so that we’re there for Chance and our other two kiddos. Though the surgery isn’t an emergency, it is important we don’t neglect having him undergo it in the near future because the “wait and see” approach with the symptoms and results learned of only create a risk that his chiari malformation and the syrinx could affect him in far more concerning ways.

This week we’ve learned his surgery has been scheduled for Wednesday, September 4th at 11am. It’ll be the first surgery he’s had since October 2011 and his 12th since he was born. We’ll be at the hospital much earlier that morning for preparations, tests and registration. His surgery may take a few hours. I could never say a neurosurgery is ever an easy surgery for any person to go through, but his neurosurgeon has reassured us that the issues he’s going through are easily fixable. Right now his brain is acting a lot like a cork and causing the CSF fluid not to flow properly. This is why he’s been gagging and vomiting and may also be why we’ve seen him begin to have uti’s and see more concerns with his mobility than we had before. Essentially the surgery involves removing a small part of the bone in the back of his skull with the hopes that the CSF fluid will then be able to flow a bit more effectively, and hopefully the syrinxes that have formed in his spine will also be able to begin to get smaller once there’s more room. He’s expected to be in the hospital for 3-5 days so long as recovery goes smoothly. We’ve been asked to watch him closely for the following six weeks as his head heals. So we’ll be giving him lots of love at home and away from public places until mid to late October.

I was already in the process of planning fundraisers for the upcoming Walk-n-Roll for spina bifida prior to all this news, but the moment we learned he would need surgery the folks at California pizza kitchen offered to host a fundraiser sooner than the norm so that we could give everyone the chance to not only come together to support this important cause…but so you all would have an opportunity to see our baby boy before he has his next surgery. Just two days before his next surgery, on September 2nd they will be donating 20% of all orders placed at their Waterford lakes location that are accompanied with the fundraising flyer. Our family plans to be there between 6-8pm for those of you who wish to see Chance. I’ve created an event in facebook for the fundraiser with more details for those of you interested in attending. If you’re not able to attend but still wish to show your support towards the spina bifida association of central Florida, Chance’s team is still accepting contributions online…just choose “give now” or if you plan to be at the walk there’s a link for that. All contributions help support families affected by spina bifida in central Florida.

Thank you all again for the continued prayers. We’re confident Super Chance will be sure to use his super powers to help get us all through the medical moments he has ahead.

Moments with Gracyn’s family

 

“No one has ever become poor by giving.” ~Anne Franke

This one thought by Anne Franke is one I’ve come to live by these last few years. Through all the trying moments our family has been through one of the things that has helped me most…is giving. I have given more of myself to help others in the past 5 years than I have in my entire life. I’ve come to realize that so much of what I do is a part of a far bigger plan by the Big man who has blessed me with so many ways to touch the lives of others. Even through the most trying moments I try to remind myself of the blessings, and that every single challenge has a purpose…sometimes one we never fully understand.

Over the last five years I’ve not only given back, but I’ve encouraged others to do the same. I’ve always wondered…what really helps open up hearts to give. Why don’t more people give? What does it take to provoke a generous soul to help others…whether it be through volunteering or through donations to help causes. Many do so when they have a personal connection to a cause…but as I’ve tried to reach out to help so many causes over the last five years…I continue to ask myself…how can I help people  feel the same as I feel in my heart. Yes, perhaps that whole thought of leading by example is one of the greatest ways. I’ve found my photography to be cherished by so many families and though I can’t always donate every minute of every day to help causes…I have found my work sometimes can be one thing to help remind people just how valuable giving can be.

This summer shortly after I began the fundraising efforts for Chance’s team for the Walk-n-roll for spina bifida in central Florida I offered up an opportunity for the first two people to donate that evening to have an opportunity to spend a bit of time with me for a mini photo session. I realize so many people are struggling financially these days, but I hoped to not only open up a few more hearts to give…but to reach out and give a couple families an opportunity to spend some time capturing some priceless moments with their families. Within a matter of minutes several donations came into Chance’s team and I was so honored for Gracyn’s mother to be one of the first two to help me in the fundraising efforts.

I realize nearly every family is has their own challenges financially that may prevent them from giving, whether it be through volunteering your time or making a very small contribution towards a cause that’s important to you …I hope somehow this has reminded you all that giving is good for the soul. Surely if more people opened up their hearts and found it in them to give, even the smallest amount to help a cause in need, that the world might be a little better place. Because our little guy has surgery coming up I’m not sure when I’ll be able to offer another opportunity like this yet, but definitely stay connected to my blog and facebook if you’re interested…I am confident this isn’t the last time you’ll see me giving.

Sara, thanks for opening up your heart to help make a contribution this summer to Chance’s team…I feel incredibly blessed to not just have your support but it’s given me an opportunity to enjoy spending some moments with your sweet little girl Gracyn…she was so much fun and full energy…which I absolutely adored. Hope you and your family enjoy the moments we captured this summer.

 

Claire & Angeles

 

I’m working on getting caught up sharing a handful of the amazing moments captured this summer with some awesome families. This latest update shares a few of the moments captured with Claire & Angeles…to adorable little girls I’ve photographed as newborns have now grown so much and are so darn precious! Two really special babies…I give Claire quite a bit of credit for reassuring me I had the strength to continue doing newborn photograph after the miscarriage…she was the very first one I photographed in 2009 after that crazy experience…and can’t help but admire how much we’ve all grown in the last few years. Rachel I hope these moments help remind you how blessed you and your family is…really adore you all. Best wishes to you all.

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