Passing time.

I know, I know…it’s been more than a day since I’ve posted an update about my little man on my blog and I know you all are anxious for an update. I’ve had quite a few people asking me how he’s doing. Well, we’re just passing time and this photo pretty much  sums up what Chance thinks about just sitting here in the hospital…silly guy would be bored to death if it weren’t for that pacifier that he loves to show off lately.

Oh…and he knows he’s funny when he does this little pacifier trick. Really, this kid could be a comedian…he cracks me up.

Seriously, just go ahead and laugh…that’s all he wants is to make you smile…so he can smile too.:)

We were told yesterday that the labwork came back from his CSF showing that his red blood count was high in the fluid that’s being drained from his head. We had hoped to go through surgery Monday, however, because of the results of this test we have to wait. If we went forward after getting those results it’s likely that the shunt would clog again and cause another malfunction. So we’ve got to wait a few more days. Surgery will likely happen on Wednesday or Thursday. Chance is getting bored…there’s really only so much we can do.

Sunday I got to take a bit of a break and headed over to Winnie Palmer to meet with others for the Spina Bifida Association of Central Florida’s board meeting. We chatted a lot about the planning for the upcoming walk-n-roll event and afterwards a few of the ladies headed over to visit Chance. I suppose I should thank spina bifida for doing one thing…it’d build a family I never knew I had. I’ve had more people affected by spina bifida visit Chance in the hospital than anyone else.

Chance enjoyed the company.

While at the meeting we received word that the Mayor of Orange County and the Governor of Florida have officially recognized October as being Spina Bifida Awareness month in the state of Florida. We all owe a great deal of credit to Nicole Gower for helping make that happen and for all the amazing work she’s doing to help push for the local chapter to be something so much more amazing to families in central Florida.

The days seem to be dragging since we learned surgery would be delayed. The days have begun to merge together. Chance is no longer on an IV. I’m quite thankful he has one less wire for me to worry about but it means we need to pump him full of more fluids given the amount of fluid being removed from his little body through the wire draining fluid from his head. He’s been drinking lots of pedialyte.

Around lunchtime Jaylen came to visit. He brought his favorite puppy dog.

Jaylen has missed his baby brother a lot. He is always excited to come visit and once he arrives home he lets Jason know he misses Chance. It made my day to see them together today. Chance was bored and tired of laying around so I sat him in his bumbo just before Jaylen arrived. Boy was he excited to see Jaylen! Jaylen has this new thing he started to do with Chance. If you’ve ever seen Finding Nemo you might recollect the scene from the movie where they say “fin. noggin. dude!” Jaylen does this to Chance and he ends up full of giggles.

I can’t wait to be home so they’ll have more time together…

Chance was a bit more fussy today. I’m convinced he’s just tired of being in this room laying around. As much as I try to move him around sometimes it just doesn’t help. We spent a while this afternoon just hanging out together. It’s a hassle to move all the wires and make sure the wire draining externally to a bag is set up correctly but we did what we  had to do and he couldn’t have been more happy to be in my arms. Today this little stinker learned to pull the wires off that track his vital signs. If we’re not careful he might get super sneaky and find a stealth way to escape…okay, that’s what I wished we could do.

Quite a few times today this was the baby boy I had to care for. The one who let me know many times today that he’s had enough of this hospital. Yes, Chance, you’ve expressed my sentiments quite well too. Just a few more days buddy and we should be home.

If all goes as planned we should be here just a few more days. The doctors have ordered him start a vitamin K shot to help with clotting so that when it comes time for the surgery he might do better and hopefully it’ll help prevent issues with the next shunt.

So for now we wait. And pray.

Purpose & Blessings

We’ve been at the hospital for four days now with Chance. This little man is still waking up all smiles. I know many of you out there have been feeling heartbroken over all you’ve seen my baby boy up against lately but I have to tell you that we still feel so blessed despite the circumstances. The longer we are here the more glimpses of things we see and I can tell you that circumstances could be so much worse…so I am thankful…but yes, quite ready to be home now.

Chance and I woke up early this morning. I was preparing to leave my baby boy behind for a few hours to do a photo shoot. It’s tough to leave his side but given that he’s stable I felt it was a good reason to escape and take a bit of a break from the hospital. I have no doubts that Chance supported me on this one…the photoshoot planned was to finally meet some of our new friends who also have spina bifida. We had the photoshoot scheduled last weekend but his surgery last weekend interfered with our plans. As I got my stuff gathered to head out I admired watching this little guy…and really not wanting to leave his side.

Before I left he fell asleep again. I kept hesitating on whether I should commit to this photo shoot that I had this morning but given that he was doing well I just knew it was something that would help me, him, and help us both continue to create awareness about spina bifida. The more I think about all we’ve been through and having Chance I realize he is here for a purpose…and in having him here…somehow all this is giving me that much more purpose to do the things I know may very well impact the spina bifida community in a very positive way. So I headed out while my baby boy rested peacefully.

This morning I met four families who all have a child with spina bifida. The goal was to take photos that would potentially be used for the Spina Bifida Association and for the upcoming Walk-n-roll event promotional material. These families were chosen because they have also been very proactive in helping with the fundraising efforts for the Walk-n-roll. I’m quite excited to feature the kids to help create awareness about spina bifida. Aiden who is just a few years old arrived full of energy. He uses a walker to assist him in getting around but it certainly didn’t slow him down.

In fact, he had me running around after him. He had a blast racing me…and I swear he always beat me.

Really, he was amazing to watch…there wasn’t much getting in his way of getting around.

Of course it’s tough not to also admire his adorable smile.

Meet Dominick. He’s thirteen and also has spina bifida. He was the oldest of the kids but we still managed to get him involved and I had a lot of fun getting to know him.

He’s pretty darn fast too…there wasn’t much stopping him. It was an eye opening experience for me seeing each and every kid today get around today…sure they do a lot of this stuff differently than most people but their challenges certainly didn’t prevent them from doing what they wanted to do.

Dominick told me he liked to take photos…so here he is after I trained him how to use my camera. He sure looks like a pro already, eh!?

Of course I had to steal my camera back so I could take more awesome photos of him…

Dominick lead the way today…here he is with 18 month old Patricia who also has spina bifida.

They spent some time together and I tried my best to photograph them moving around but they were just so darn fast but so much fun to watch. At one point the paused…and this was the “moment” that made all us parents say “awe…”

Patricia was pretty amazing to watch. It’s tough to believe this little girl this young has mastered maneuvering this stander device that helps her get around. But she moved around like a pro and totally impressed me.

I fell in love with Patricia’s expressions.

Four year old Jordan was the last child I met with. He also has spina bifida and was exceptionally cute today. I’ve photographed a lot of kids but I have to say that he was one of the most articulate four year olds I’ve met. He was such a high spirited, curious, and happy kid.

Yes, this kid has personality…the kind that is tough not to fall in love with. Jordan you rock my friend…thanks for making me laugh today.:)

I returned back to the hospital and shortly after Jason headed out to pick up the kids and take care of some things at home. It left me watching over this sweet baby boy of mine who rested more. I’m praying he’ll have recovered enough for us to go forward with the next surgery so we can go home soon. Yesterday his CSF had gotten really clear, which is a great sign. Today he had a bit of bleeding again, possibly from moving around with that wire. I’m praying it doesn’t prolong whatever comes next.

Chance had visitors today. We haven’t had many at all until today. If you’ve been following my blog you likely recall Chance’s spina bifida friend, Mason’s mother, Mary. She was sweet enough to stop in and chat for a bit and spend some time with my baby boy. Chance’s new spina bifida friend, Dominick also stopped in with his mother to say hello. It was a nice distraction and we all got to chat about spina bifida and our experiences a bit more. I am pretty sure Chance enjoyed the company.

Mary caught us in the room one of the few times of the day that all five of us were present. At most we might all be in the room together as a family an hour out of the day. It’s tough for the kids to stay for long without getting bored or worked up. Mary was courageous enough to pick up my camera to take a few photos…so we finally have one to share of all of us.

The nurses gave Chance a bath again today. His head has to stay super clean to help prevent infection. The nurse decided to give him a faux hawk. I don’t think he realizes just how cute he looked.

And then we all told him…and he must have believed us.

This evening I left Chance behind again. Yes, twice in one day. I must sound like the worst parent…but it was worth taking a walk across the street to Winnie Palmer to meet with a family who had their baby about four weeks early. Here’s Finn who’s just 2 days old. He’s got some growing to do and some things to be monitored before he goes home…but as you can see…he’s perfect…and a blessing.

Yes, it totally sucks to still be here at the hospital…but no matter how much I sit here wishing to go home…today was that reminder that despite the circumstances all this happening has a purpose…and that I have all the reason in the world to feel blessed.

The waiting game.

“I think I’ve discovered the secret of life – you just hang around until you get used to it.” ~Charles Schultz

I spent another day at the hospital with my baby boy. I suppose it’s quickly becoming a home away from home that we’re trying to accept. Chance and I made the most of the day and hopefully sharing a few more moments as we wait will help you all smile a bit as we watch this little guy recover.

He woke up in a pretty good mood today.

We started the day with lots of smiles and giggles.

It didn’t matter who was talking to him…most of the day he seemed to smile. I’m convinced he’s out to win the hearts over of all the nurses and doctors.

We had a few moments where he wasn’t feeling his best…but moments like these didn’t last as long today.

Jaylen visited again while Hope was in school. I love how much he wants to try to make his little brother smile.

I’m in love with how big of a heart this little boy has.

Chance spent some time on his belly again today. He’s getting a little annoyed with just laying around in this hospital bed.

This kid cracks me up…check out his latest trick.

Oh, and he thinks this is funny too. He did this several times today and at one point he did it when he had a room full of doctors and nurses in the room chatting with me and all we could all do was laugh…then he smiled…yes, he’s got everyone here at the hospital in love with him.

Jason brought the bumbo to the hospital. It made Chance’s day being able to sit for a change. He spent a little time watching cartoons contently.

Leave it to spongebob to keep my baby boy happy.

Another priceless moment with Jason & Chance.

This is the device collecting the cerebral spinal fluid (CSF). In less than 2 days he’s had somewhere around 300 cc’s drain from his head. It basically drains once the pressure in his head reaches a certain level set by his doctors. They measure everything that comes out and make sure he gets IV fluid for anything draining. The good news is that his fluid has been clear today so we’ll continue to watch it and pray that no additional blood presents itself in the CSF so we can move forward with surgery soon.

Today we met with the hematology doctors. The initial lab work came back showing one level a bit higher than normal and another number not quite as high as they anticipated it might have been after surgery. I’m no doctor and I’m loosing track of all the acronyms and terms I’ve had said to me in the last two days but from what I understand they’re going to do more tests to see if he has an issue with his blood clotting. They don’t feel it’ll be a major concern, but if there is an issue it’ll be good for them to know before future surgeries as it might affect what they do prior to surgery. So it sounds like more labwork for my baby boy soon so we can rule out or confirm if these things are issues at all.

Chance has been nursing for all of his feedings but we’ve been giving him juice once a day. He’s gradually getting better at holding his bottle. Okay this didn’t last more than a minute or two…but it’s a big deal for me.

Jason left with the kids early this evening…they took a few more minutes to tell Chance bye. There’s no doubt how much the kids adore this little guy.

Chance has been doing better at falling asleep without being held. I think that it’s harder for me not holding him as much. With all the wires it’s a huge hassle to take him in and out and then also adjust the device that drains fluid from his head. This is usually how he falls asleep most days…with one hand on his head.

He startled so easy…all these final photos I took and he woke right up immediately after he heard my camera shutter click. I can’t help but admire this little guy.

My family has come to realize that me taking photos is a way of life for them. I’m often one to take photos around moments when most might not. And tonight as he slept lightly and kept waking up I nearly just put the camera down but I’m glad I took another photo that woke him up because in doing so I was able to take this photo…that pretty much summed up Chance’s day…he ended the day with a smile on his face.

Waiting for the next surgery.

“History, despite its wrenching pain, cannot be unlived, however, if faced with courage, need not be lived again.” ~Maya Angelou

I know many of you have been waiting for an update. Before I share moments from today I thought I’d take a brief moment to share something quite special to our family this year…the Walk-n-roll for spina bifida is just one month away. Chance’s team still needs your support and would love to have you all join us in person and/or through a donation. All donations go directly back to the spina bifida association in central Florida to help the families locally affected by spina bifida.

It might not seem like that big of a deal to you all who might not be affected by spina bifida, but if you’ve somehow stumbled upon my blog and seen just how much my baby boy has been affected by spina bifida hopefully you all realize that we are just ONE family affected by spina bifida. Our local community needs far more support and if we raise enough funds it’s likely we’ll receive a lot more support from the national chapter to ensure families locally are provided the best possible support system and resources possible. So if you have a moment and would like to join “Team Chance” head on over to the Walk-n-roll page to join and perhaps you can help by making a contribution to help the spina bifida association. I’m driven to do much more to help the many other families who are or have struggled with similar challenges as we have faced this past year.

DAY 2 OF RECOVERY
In comparison to Chance’s previous surgery recoveries, thus far he’s doing quite well. He has had fussy moments where I could tell he’s uncomfortable or in pain but he seems to be adjusting well and for the most part I’d say he seems to be doing better recovering than he did after most of the previous shunt surgeries. This morning he laid in his bed as calm as could be…at just 7 months old he seems interested in tv.

He smiled more often this morning…a sign that he’s feeling a bit better.

He has been more tired today than on a typical day, which is understandable. A common sight for me today was seeing his sweet face through the crib. One moment he stares and the next he’s sound asleep.

Today the nurses were asked to draw 10cc’s of blood from Chance in order to do some tests. With his shunt clogging due to some blood being in his cerebral spinal fluid they want to be sure there are no other issues with his blood like clotting issues. They came in while he was sound asleep. He was out cold and we feared he’d wake up. For a baby 10cc’s of blood is a lot so rather than poking him in the typical places they decided to draw from his femoral artery near the top of his leg. I’m not sure if I was happy to see he wasn’t bothered by it or if the spina bifida motherly instincts make me worry about the other challenges like his leg movement and feeling that we may be challenged with in the years ahead. I was surprised to see him not even begin to cry. For now I’ll stop worrying about tomorrow and continue to remind myself that we’ve got to make it through things one day at a time.

This morning while Hope was in school Jason brought Jaylen to visit Chance. He told me this morning that he missed Chance. He was so excited to see his baby brother. He kept trying to tickle him and make him laugh.

Jason spent a bit of time with Chance. He kept getting him to high five. At one point Jason jokingly pretended to arm wrestle his baby boy. It was a priceless moment that made Chance laugh. Something tells me he’s laughing because he knows his daddy already thinks Chance is tougher than us all.

Jason’s been spending more time making sure Hope & Jaylen are cared for, taking Hope to school, and running back and forth between the hospital and home when it’s been needed. Needless to say moments like these with his baby boy never last as long as either of us would like…and we’re quite anxious to bring Chance back home so our family won’t feel so divided.

After Hope got out of school she got to come visit her baby brother. She was very worried about him yesterday. At this point I have to admit the numerous surgeries that seem neverending are beginning to wear on our entire family. Hope said yesterday as I dropped her off at a friend’s house before I ever knew he’d have another surgery, “Mommy is he going to break a record or something…his surgeries can’t beat how old I’ll be.” She’ll be ten in November and didn’t want him to have any more surgeries. I think we all are wondering when we’ll stop having to have another surgery…unfortunately we can’t answer that one…so we’ll just have to keep praying.

If you keep Hope & Jaylen in a room together for too long…say 10 minutes…they begin to act silly. Of course silly moments give us reason to smile.

It’s been a long day waiting as my baby boy continues to recover. Chance spends most of the day resting or playing contently. When I’m not caring for him I’ve been getting some work done and trying to catch up to responding to the many messages that have been sent in the last day. You all are amazing and I can’t thank you enough for sending all your sweet thoughts and prayers. If you haven’t heard a direct response from me please know I am listening…but it’s becoming impossible to reply to every message at the rate they’re coming in. I have even had kindhearted people in other countries writing in the last day to send their thoughts and prayers to our family…I suppose just another sign of how much my baby boy has touched others in all he’s faced.

Having Chance recovering from so many surgeries is never easy. I’ve always hated how many medical wires he has to be connected to and just dealing with trying to handle him with incisions on his head. Well, this surgery has complicated those feelings so much more because he has another wire that is connected within his head in order to drain the cerebral spinal fluid (CSF) externally until they can put in another shunt. In just a day it drained about 135 cc’s of CSF from his head that typically would have struggled to drain on it’s own with a faulty shunt. If that fluid doesn’t drain away from his brain it could cause permanent damage so as awful as it looks…it’s what is needed right now. He has two other incisions where they removed the shunt and two catheters that were in place draining fluid before. Needless to say I’m a little nervous handling him but thankfully he doesn’t seem too bothered by it. The best news thus far is that the tests so far have come back with no signs of infection. We have about another day to wait for the final results. No infection means we can move forward with his next surgery soon. We continue to wait and monitor his CSF. Originally it was pink due to small amounts of blood but in the last day it’s gradually become more clear as time passes and his head has time to heal. More spina bifida/hydrocephalus battle wounds for my baby boy…but in time these incisions will heal and fade and in time it’ll all be a distant memory.

Tonight after Jason and the kids left Chance got a bit fussy. He had just ate the hour prior. He refused to sleep. He didn’t care for his pacifier or his toy. And then it hit me…this kid is just tired of laying flat on his back. So I turned him over and let him play for a bit with his toy. He got pretty excited to spend a bit of time on his belly.

As we wait for the next surgery in the days ahead, we anticipate it’ll likely take place Monday. Obviously we have to wait to see how he recovers and for tests to return but thus far he seems to be doing better. I have this feeling the biggest challenge soon might be how to keep him occupied when he gets tired of laying around in this hospital room.

I suppose if that’s the biggest problem I have over the next few days I won’t complain at all. I suppose I think it’s a little hard to believe that this kid has now been through 10 surgeries and he’s still smiling.

Thank you all again for your support & encouragement.

More shunt woes.

“There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief…and unspeakable love.” ~Washington Irving

I find myself a little perplexed to find the words to once again write to update you all on my baby boy having another surgery. As I sit here in a silent room hearing nothing but hospital beeps surrounding me and watch Chance recover from another surgery I feel a little overwhelmed with what seems to be a neverending struggle with his shunt. I’ve sensed sense before we left the hospital this past weekend that something wasn’t quite right but I tried to remind myself that he was recovering still from surgery and should be understandably more fussy at times. As the last few days have passed I’ve noticed him more agitated and that his soft spot was gradually becoming more full at times throughout the day. My intuition, unfortunately, has rarely failed me when it comes to my baby boy and for the last few days I could just sense we would be here. I know some might perceive it as me thinking negatively…but I can’t ignore the instincts that something was wrong. I suppose reflecting on the day might somehow help me…but also help update the many of you who have come to adore my sweet baby boy.

Today along with the fact that he had been more fussy, lethargic, and having a more full soft spot, he once again projectile vomited. That is usually the one thing that finally sets me off and makes me realize there is no second guessing…I just know there’s a shunt malfunctioning with all the symptoms I saw today combined. So I took him to the ER and we waited. It was so busy this afternoon. He underwent a CT scan which showed that his ventricles were larger…essentially that the hydrocephalus (fluid) on his brain was increasing which is typically a sign that his shunt is not working as it should.

Shortly after the CT scan the neurosurgeon came into update me and tapped the shunt. I held him down as they tapped the shunt and valve to see if fluid would flow through either. Unfortunately the fluid was very sluggish which was another sign that his shunt had malfunctioned again. We knew at that moment that Chance would have another surgery. Seeing him a moment after they tapped his shunt left me speechless…here he is in a daze and totally not himself.

As we waited Chance spent a bit of time in his car seat. As I looked over at him to take a photo he looked upward. Yes, son, please lets pray to God he’s listening…we really hope this is the last of the problems with your shunt. Surely God must have a greater purpose for all this happening but at some point he’s got to say it’s enough…I pray.

Everything from that point forward happened so quickly. They bathed him. Put in an IV. And we left the ER fairly quickly as he headed onto get ready for surgery #10.

By now this kid knows the deal. I could just tell by how he gazed at the nurses that he realized he was about to have another surgery.

My sweet little boy was so tired and after all the hoopla they had to go through to get him prepped for surgery he finally fell asleep. It breaks my heart seeing him not acting quite like himself.

After surgery the doctor came out to update us. Surgery went well but Chance currently does not have a shunt. Yes, you read that correctly. His doctor completely removed his entire shunt. The catheters and the shunt valve were all clogged because any ounce of blood that gets into the device can cause it to easily clog. His doctor said he could have tried to put in another shunt but because the CSF (cerebral spinal fluid) came out pink, he has no doubt that this shunt problem would only continue if he didn’t give his head time to heal.

Jason and I both are feeling a little overwhelmed. Chance’s doctor said we will be here at the hospital at least 4 to 5 days. Though he doesn’t have a shunt he does have a tube coming from the back of his head that is currently draining the excess CSF that builds up due to his hydrocephalus that he has due to having spina bifida. The hope is that in the next 4 to 5 days his head will have had enough time to recover and that they will be able to have a fresh start in putting in a shunt. Yes, that means he definitely does have to have another surgery.

So for the next several days we’ll be in the PICU (pediatric intensive care unit) as we watch over him during his recovery.

As if the typical medical wires he’s connected to aren’t enough, he now has an even more important wire that is connected directly to his head draining the fluid. The wire drains the fluid into a device connected to a bag. As you can see…the CSF is definitely pink…likely due to being mixed with small amounts of his blood after surgery. In just the 1 1/2 hours we were in the PICU 24cc’s of CSF was drained. Thankfully relieving this pressure seems to leave him more comfortable thus far too.

Yes, it’s a little surreal to be here again. Arnold Palmer Hospital is becoming a home away from home. Everytime we arrive we quickly bump into nurses or doctors we’ve encountered in our many experiences since Chance was born. They all are beginning to say “no…not you again” followed by an expression that reminds me that they wished he wasn’t going through so much too.

Needless to say this news is heartbreaking. So for now…I suppose all we can do is pray for my baby boy.

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