now things get fun…

Tuesday, August 30, 2011

“One day your life will flash before your eyes. Make sure it’s worth watching” ~unknown

It seems like I’ve blinked and my baby boy has grown so much…he’s just over six months old and boy is he growing a lot lately. He’s definitely the most “social” of my kids at his age. He wakes up babbling up a storm. Forget coo’ing…this kid now squeals and talks all sorts of baby talk. He smiles and giggles and is one happy little fellow. This past weekend I caught him hanging out in his bumbo. He’s such a big boy now that he prefers to sit in his bumbo most days rather than his bouncer seat. Often times he’ll sit while the kids play or watch tv. It’s not uncommon to find him having fun too…just like this…

Yes, things are beginning to get to be “fun” for this little guy…I don’t need to say it…we already know he’s awesome. Something tells me he may know it already too.

I swear it was just yesterday that Chance was born. While he was still in the NICU shortly after I came home from the hospital without my baby boy I recall receiving an adorable unique toy as a gift from one of the most supportive and compassionate professors I’ve encountered at SCAD. Yes, the type of professor that has continued to nudge me the last two years not to give up despite how many challenges I’ve faced. I recall back then arriving home from the hospital after visiting Chance a tad bit sad to not have him home yet but uplifted by such a sweet gift. I knew back then that it might be a while before he got to play with it…but I just knew it’d be quite memorable when that moment finally came around. This little toy is definitely his favorite. I suppose it’s a special reminder of the challenging journey of the last two years…and the blessings that have come with the journey.

Hope continues to be an awesome big sister. She’s claimed Chance as her “baby”. I just adore seeing their time bonding.

Hope has been a huge help with Chance. She’s been known to help out with him often as I am working or taking care of things around the house.

Though I know she is head over heals in love with him…it’s pretty obvious that Chance loves his big sister too. He’s so attentive with her and is known to let out big laughs and squeals often when he’s getting attention from his big sister.

Hope is found singing and talking to him a lot these days. Chance absolutely loves it.

This past weekend also marked another milestone for my baby boy. I’m no longer the sole source of Chance’s nutrition…he’s officially begun the journey to eating solid food. I can’t say my babies have worn bibs for long as babies…perhaps because I’m a little OCD with keeping them tidy…or maybe because I really don’t want more laundry to do.:)But when they first begin eating solid foods they do wear bibs so running into this one at target before he was ever born was the perfect first bib for him to wear considering how much I’ve blogged about him since the moment we learned I was expecting him.

Before we fed him cereal for the first time I allowed him to play with his spoon. This little guy is quite coordinated with his hands for his age.

It was fun just watching him learn to hold his spoon. I don’t think he quite understood what we were about to torment him with. And yes, check out “the look”…six months old and I’m already getting the “please get that camera out of my face” look.

Before long he’ll be feeding himself…

…and likely helping eat us out of house and home…yes, I’m sure someday I’ll miss seeing these pudgy little baby fingers fiddling with his baby spoon.

When Hope & Jaylen were babies I recall how exhausting breastfeeding was and I was eager to begin feeding them solid food by the time they were four months old. With Chance I have been in no rush. I know for the first six months nursing is more than enough for a baby and to be honest I’ve feared having his spina bifida influence things like constipation the moment I put him on solid foods. But lets face it I can’t (and don’t want to) nurse him for the rest of his life. He’s got one year and so it’s time now to begin getting him ready to eat like a big boy…okay a bigger baby. He seemed quite interested in eating cereal. Hope has been waiting for a while to finally get to feed him so I let her feed him for the first time.

He turned his nose up a bit…he definitely noticed a difference eating cereal. But he did quite well…

This kid just cracks me up. The transition thus far seems to be no big deal to him at all. It doesn’t take much to keep him happy…food certainly helps.:)

So there you have it…my baby boy is once again growing fast before my very eyes. Before we know it he’ll be slinging food all over the place and feeding the dog his extra cheerios. Yes…now the fun begins…

Hope

by Amanda Kern

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Back to work.

Thursday, August 25, 2011

“Give me your faith. Let me show you my strength.” ~unknown

The break between semesters has certainly flown by this year. I suppose it seems like a big chunk of it was filled in the hospital or doctor’s offices. I’ve always enjoyed returning to Valencia every fall…the renewed energy that fills the campus the week prior to classes starts is quite uplifting.

Yesterday we had our annual welcome back to campus. It’s an opportunity to reunite with colleagues, attend meetings, and begin getting caught up for the fall semester. If you’ve followed me in facebook, twitter or instagram you likely saw a peek at a few memorable moments yesterday.

I was reminded yesterday that a meeting isn’t a meeting if it doesn’t include notes from my colleague Kristy Pennino…which always give reason for us to smile.:)In between meetings we took a trip past the art gallery on east campus and fell in love with the upcoming exhibition, Graphic by Design. Several local graphic designers with amazing talent have their work on display. Us design obsessed professors agreed it’s by far one of the best shows we’ve seen on display at Valencia. I was quite inspired by the quote, “give me your faith. let me show you my strength” found in Bryan Kriekard’s work on display. It seems quite fitting for me after this past year. The design work is on display now and the opening reception is September 9th from 630-830pm at the Anita S. Wooten gallery so be sure to check it out if you have an opportunity to stop by. In addition to preparing for the upcoming fall semester my mind is equally consumed with my return to course work at SCAD. If all goes as planned I should return this fall. It won’t be long and I’ll be working on my thesis proposal. Thanks to Kristy I have been immersed in the book do good design by David Berman which I’ve found quite inspiring for some of the potential topics for my thesis proposal. In just a day I’ve made my way halfway through the book and would definitely recommend it to any graphic designer.

This morning marks the annual Academic Assembly at Valencia where all full-time faculty and staff gather to be inspired and updated. President Shugart always spends the morning with us giving us a thorough update on the college’s mission and what’s ahead for us all each year. Every year, even amidst tough economic times, he greets us filled with hopeful and inspiring thoughts. One of the most memorable moments of the morning was at the end of the Academic Assembly when President Shugart introduced us to Valencia’s future students…a group of elementary school students performing on stage for our faculty. It was a precious sight to see young children on stage,  nearly the same age as my daughter Hope, singing and performing. I’m a little guilty of doodling during longer meetings and I found myself doing that at the Academic Assembly. Many great thoughts were shared with us this morning…I managed to jot down a handful that I’m sure I’ll remember for quite some time.

One of the exciting new things that has come this fall is Valencia’s new news site dubbed “The Grove”. It gives everyone at Valencia an opportunity to participate in sharing news to update us on the great things going on at the college. You can subscribe to it by RSS or for us faculty & staff the “news” is being emailed each Tuesday…sort of like a “newspaper”.

I finally finished another crazy to do list. If you ever want to know what’s in my mind I suppose you can just check out a mindmap.:)I finally finished doodling this thing yesterday as I was preparing for the fall semester. Next week I’ll great five new classes full of students…of course many other things will be keeping me busy along the way. But busy is good…I wouldn’t have it any other way. I’m glad the break is behind me…it has definitely been one of the more challenging “breaks” (if you really want to call it that)…so thank goodness busy times are ahead.

Amanda, Updates, valencia

by Amanda Kern

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Taking Chances.

Wednesday, August 24, 2011

“Only those who will risk going too far can possibly find out how far one can go.” ~T. S. Eliot

Out of all the things I’ve learned the last few years it’s that life is a whole lot better when you take “chances”. I think it’s obvious now that Chance is here with us how much he alone has changed our lives but looking back at so many things beyond Chance’s presence…everything from my teaching career, to photography, to all the non-profit work I’ve done…some of the best things have come at times when I’ve driven forward, despite obstacles that were in the way. This evening’s photos with Mason once again reminded of the importance of taking chances. I expressed an interest to Mason’s mother after his photos last week to photograph him outdoors in a bowl. Photos of newborns outdoors are a tad bit more challenging as you have to worry about the weather…which in Florida this time of year means rain. Mary & I agreed to meet at a local park, despite the thunderstorms that do arise several times a week this time of year. Usually this time of year it rains a bit most days but the rain typically doesn’t last the entire night. We arrived and it was raining so we hung out for a bit and tended to Mason’s needs. At 3 1/2 weeks he has become more alert. We passed a bit of time as we hoped for him to fall asleep. I took photos admiring Mary & her new baby boy.

If you’ve been following my blog you may recall that Mason was born with spina bifida just like my son Chance. Mason’s back is still healing but he’s doing so well. I remember those days so well…just wishing and waiting for Chance’s back to heal. I know it’s only a matter of time and those worries will be behind Mary and Mason. I’m still so surprised at how little most people know about spina bifida. So many times I have had people who thought that merely closing a baby’s back is a “cure” for spina bifida. Unfortunately it’s not a cure but it’s one less thing to worry about. The mark on Mason’s back will be a constant reminder of the beginnings of his journey with spina bifida. It’s a beautiful reminder of the blessings he’s brought despite the challenges he’s been faced with.

Mason showed no signs of falling into a deep sleep so we moved forward and began posing him in a bowl in hopes that he’d find a comfy spot so I could take his photo. I’m one of the most patient people, especially with newborns but as we began I could sense the rain coming back so I had to work fast. Mary was a huge help and once again sang a sweet lullaby to Mason to help keep him calm.

After a few minutes it worked…he wasn’t sleeping but was content. I didn’t have time to spare as the weather was beginning to look worse. The entire time I recall talking to Mason telling him if he cooperated he’d be my new best friend. Yes, I really do talk to the babies most times…and most times they listen.

Mason was pretty amazing to me. All the waiting and putting up with the rainy moments were worth it. I owe Mary a huge thanks…outdoor shots are often a tad bit more challenging so it helps to have awesome parents helping me. Thanks to her helping hand and patience this sweet photo of her baby boy was possible.

After I was done I joked that the nearly six years I spent in the military has finally been put to good use…between spending time posing him and laying on the ground to get the shots of Mason in the bowl I arose wet and full of dirt…but it was so worth it for this little friend. We celebrated for a moment afterwards and I told him how absolutely awesome he was.

Amanda, Photography, spina bifida

by Amanda Kern

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Ready. Set. Go.

Tuesday, August 23, 2011

“Half our life is spent trying to find something to do with the time we have rushed through life trying to save.” ~Will Smith

The summer has flashed before my eyes…again. Not so sure how that happened…seems like every year it flies by even faster. Here I am nearing the end of my break between semesters and with Hope starting back at school…still in a bit of shock that the summer is nearing an end. This week is when things are about to pick up…not that I haven’t been busy most of this year…but the fall will bring quite a few more busy moments. I think most people know I thrive in busy times…now I just have to get ready to hit the ground running and pray I find and maintain the “umph” to keep pushing forward with some big things ahead…and really just pray the medical moments settle down.

Last Friday we went to “meet the teacher”. Hope arrived at school to check out her class list and for the first time in a long time she knew barely anyone in her class.

For the first time in two years Hope is going into a class with a new teacher. We’re going to miss Mrs. Myers who has taught her the last two years…though I thinks he already knows she (and her other teachers) are stuck with us for life. Hope’s new teacher seems really nice and enthusiastic about teaching my fourth grader. Yes, she’s going into the fourth grade! *sigh* She was so enthusiastic that Hope left school that day saying she thought her teacher took a five hour energy before meet the teacher…yes, I love my girl for noticing just how excited her teacher was.

Since my surgery I haven’t carried Chance quite as much in the bjorn…so we pushed him in his stroller during meet the teacher. He such an awesome baby boy…just chillin’ while we walked around saying hi to Hope’s new teacher and all her previous ones. Several years from now I know I am going to look back and miss him being this little on his first time joining us for meet the teacher.

Jaylen told us while we were in Hope’s class that he wanted to go home. Part of me was wondering if he knew his big sister was about to go back to school and that he’d have to be home with out her. He and Hope have spent so much time together this summer and the last six months since Chance was born they really have built an amazing bond. At times they’ve come to antagonize one another like most siblings but this little guy truly looks up to his big sister. Yes, I know…it won’t be long and he’ll be in school too…I won’t rush that thought…I’m definitely NOT ready for that moment.

We rushed around to all her other teachers to say hello. It was evident she was having a lot of fun and excited to be going back to school. I paused for a moment and told her we needed to take a picture…okay, I’m pretty sure we were still walking as we took this one.

Hope & her awesome teachers…kindergarten through third grade…yep, they’re keepers. It’s so awesome to see how much Hope’s face lights up when she sees them…and equally as awesome to see how excited they are to see her. Every year the transition to a new class is definitely not what we look forward because we sure do miss having her former teachers teaching her. I suppose this year it’s a tad bit tougher because she had been in the same class for 2nd & 3rd grade. Thankfully they let us come back and visit every year.:)

We left school hearing the best news that came as a bit of a surprise. One of Hope’s good friends since first grade has returned to her school and just happens to be in her class. It totally made her day.

Every year on the first day of school I take a photo of Hope and her brother…well, now brothers. When she started school it was just her…now she’s an amazing big sister to her two little brothers.

Yes, time is flying a little too fast…and she’s growing up before my eyes.

PINK HIGHLIGHTS
Friday afternoon after meet the teacher I did something a little crazy….I took Hope to let her get pink hair extensions put in. Yes, I did. Call me crazy…or perhaps “cool”.:)I made sure it was okay with her school. Rather than highlights we elected to let her have pink extensions because they could be removed more easily than dying her hair back blonde afterwards. She’s been begging for them forever and I admit I tried to avoid getting them but I came to realize it really won’t hurt her. I am a creative…and totally supportive of individuality…within reason. She’s been such an amazing kid that I figured it was worth letting her do something fun that would help boost her self esteem.

I allowed her to get three put in and let her choose where they’d go. Whenever she gets tired of them or wants them out they can easily be removed.

MY BABY BOY
As Hope returned to school I was a little curious to see how Jaylen would react after they enjoyed their summer together. We returned home and he went right to playing contently like her being back in school didn’t bother him at all. I was a little shocked because often times when there are big changes he reacts emotionally. But he’s an awesome kid and most of the morning he spent playing with his super hero squinky toys (or as he says soup hero quinkeys). I asked if we could take a few photos…I knew I wouldn’t want to forget just how amazing he was today. He showed off these squinky toys that he’s suddenly become obsessed with.

Yes, something so simple and tiny keeps him occupied for hours. He flies his “soup heroes” around the house or in some other play toys he has. He’ll pretend they’re fighting and all. They are so small that he drops them or they get lost  somehow quite easily. These are the only ones he could find today. Today Captain America was his favorite…but really only because he couldn’t find spiderman.

Yes, he loves these things. I was just glad my baby boy spent the day playing with these rather than missing his big sister too much.

SPINA BIFIDA ICE CREAM SOCIAL
Yesterday we spent a bit of time with other families affected by spina bifida at the spina bifida association of central florida’s back to school Ice Cream social. The kids had a lot of fun – they got to add their hand prints to the banner for the upcoming walk-n-roll event.

We even got to let Chance put his foot prints on the banner. He doesn’t know it yet but he’s helping make a huge impact in the walk-n-roll event this year….so it’s only fitting that  we leave his mark on the banner. Thanks to Jason taking my camera from me we have a few photos of these moments.

I made sure to have Chance’s other spina bifida baby friends add their foot prints to the sign too. A quick photo of the boys and their awesome Momma’s. It’s been a challenging year and it sure has helped to have other families like theirs there to show their support and reassurance every time spina bifida has decided to hit us hard. You ladies rock…and so do your baby boys.:)

A huge thanks goes out to Nicole Gower who helped make the social happen. You rock lady…well, then again…this is my competition…you know Nicole is leading “Team Gower Power”. I knew they were closing in on Team Chance…but I just learned they’re officially in the lead now…by $10. Nicole give it a little time and my supporters will help us take the lead again.:){We’d love to see you all donate to Team Chance…we’re still in need of donations for the walk-n-roll event}  And really I can pretend to be competitive in the spirit of helping the cause….but Nicole knows I adore her and I sure loved her helping me with Chance for a moment at the social so I could play paparazzi. We definitely owe her a huge thanks for how much effort she’s putting into the walk-n-roll event coming up and all she’s been doing for the spina bifida association.

A COUPLE MORE OF JAYLEN
So I had this brilliant idea today…after being super busy all day it hit me that my baby boy was six months old. I had intended on taking the kids to a park and taking Chance’s six month pictures and some of the kids. Then the thunder came rolling in – so I decided not to stray too far from home for these photos. I asked Jaylen to come outside with me and we tested a sweet spot near the conservation area behind us…it wasn’t quite what I envisioned but close enough. I dusted off my 50mm lens in hopes of some sweet bokeh..and now I have two more awesome shots of Jaylen that make me realize he’s growing so fast.

SIX MONTHS
I can’t believe my baby boy is six months old. It’s still a shock that that much time has passed. It’s been a tough six months but I love this kid…he so awesome…and well, these photos certainly should make you all smile. Considering how much he’s endured it’s uplifting to see his sweet spirit shining through these photos taken today. Once again Hope was a huge help making sure he sat properly and didn’t fall while I took the photos of Chance again in his wooden bowl. I totally love naked babies in wooden bowls.:)And yes, he seriously loves his big sister.

I got so many cute shots but he hadn’t quite smiled so I poked my head up from behind my camera and said “hi baby boy” and he laughed.

I keep wondering as I take his photos “does this kid get any cuter?”  ….yes, he does. Happy 6 month birthday little man…may the next six months be as much of a blessing as the last. Now lets continue to pray that the next six months are filled with far more smiles and laughter than tears, fears and moments in the hospital.

Amanda, Family, Hope, Jaylen

by Amanda Kern

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Another shunt dilemma

Sunday, August 21, 2011

“Reality is that which, when you stop believing in it, doesn’t go away.” ~ Philip K. Dick

I know many of you have been waiting most of the day for an update since I brought Chance to the E.R. It’s been a crazy day and I’m finally finding a moment to share just how hectic the last day or so has been.

This past week Hope & Jaylen decided they’d like to join in the fun of visiting the doctor. Both presented symptoms of allergies/cold…at first it started with Hope who had been coughing for a few days. My kids are so much like me with having allergies that we hoped it’d pass. By Monday she some how had an upper respiratory infection and was put on an nebulizer. Jaylen began coughing the very next day. By Wednesday he sounded worse so I took him in and he had an ear infection and was congested. Two doctors visits and lots more prescriptions later and the kids are finally on the mend and feeling much better. Fast forward to Friday and Chance started coughing and sounding a bit congested. After having three kids the symptoms of allergies or colds don’t worry me much…I just knew to keep an eye on it and do the things I’m use to and prayed we’d be spared going back to the doctor again. As the day progressed his congestion and cough sounded a bit worse. After he woke up from a nap later in the afternoon he had a low grade fever and his soft spot seemed a tad bit more full. Jason and I felt his shunt too and for the first time with this new shunt it felt a bit more squishy like it was beginning to swell. I began to get nervous and feared something might have been going on with his shunt. I sent a picture and update to his neurosurgeon and she decided to put him on antiobiotics to be safe because the incision looked a bit red for the first time since it was put in. It was also suggested to begin to clean his incisions with betadine twice a day. I went about the rest of the evening thinking…no biggie…just antibiotics, keeping it super clean, and we’ll keep an eye on it and it’s going to be fine.

Later last night I went to check on Chance and my heart sunk the moment I saw his little head with a very swollen shunt. I sent a photo to his neurosurgeon and she agreed it was concerning. Aside from being a bit irritable (likely from being congested too) he was presenting none of the other symptoms of a shunt malfunction. The big concern was that we didn’t want the swelling to cause the incision to open up. We agreed to try to wait until the morning to bring him in to the E.R. for more tests.

Chance is becoming a frequent flyer at Arnold Palmer. Some of the people working remembered him the moment we walked in. He looked like such a big boy waiting to be seen by the doctors.

The last day has been tough…he’s been pretty fussy a lot more unless he’s eating or sleeping.

I’m pretty sure the little stinker is teething too. These days everything gets gnawed on. Don’t be surprised if we see his first tooth before long.

While we were at the E.R. Chance underwent an CT scan of his head. The important thing was to ensure his shunt was taking care of his hydrocephalus that he developed due to his spina bifida. As much as we hate his shunt…we love it too because it’s what’s keeping our baby boy functioning. Good news is that the scan showed that his shunt was working…it’s draining the excess fluid from his brain like it should. They shared two photos of the scan with me. The one on the left is from just before his last shunt revision – you’ll see the black areas which essentially are the enlarged ventricles showing fluid on the brain. The image on the right was taken this morning and I was told it’s a great sign that the shunt is working.

So the question is…why is his shunt site swelling? I was told that congestion can cause the pressures in the head to change and I’m sure all the coughing isn’t helping. A shunt is a man made devise inserted into my baby boy’s head…it’s not meant to be there…but it has to be there for him to live and function with hydrocephalus. I’m sure if this shunt stays in long enough it may someday be a bit more fused into his head but right now it’s fairly new so it is possible for some fluid to leak out of the area where the catheter is inserted into his skull which in turn causes the swelling. Yes, the parent in me freaks out seeing it…but I get it. I won’t say it calms my nerves any but knowing this certainly helps me every time I see his shunt swollen. So now we wait and see. As his shunt swells we’ll keep an eye on it and ensure there’s no external leaking or that no other shunt malfunction symptoms arise.

Once we finally got the word that we’d be discharged they gave me the green light that he could be fed again…it certainly helped him feel better. Shortly after he was in a much better mood. I of course spent time waiting by taking pictures. I’m sure some people may think I’m crazy for taking so many photos of my little man in the hospital…but it really is like therapy for me. And well…I suppose it helps tell this little story I’ve been writing for quite some time now.

You can thank the 365 photo project I did in 2009 for this shot. I don’t quite take a picture a day like I did back then…but back then that little project forced me to look for the moments…the little ones like this one – and find value in it. Here I was waiting to get discharged and passing time. I have lost track of how many of these hospital name bands Chance and I have gotten this past year. They always seem to fall off of his little legs. But today it stuck and his little toes were poking downward…I saw this picture in my head and took it a moment later. Thankfully it worked out considering how limited I was.

Thankfully we escaped the E.R. without a surgery or getting admitted…here we both were feeling very relieved.

A couple hours after we got home there was a moment where Chance was fussy and I had pretty much done all I could. I sat him down for a moment and he continued to cry. Moments later his big sister scooped him up and walked around talking to him sweetly and he had stopped crying. I looked over and this was the sight I saw…yes, a priceless memory.

She really is the best big sister ever. Last night when we were worried we’d be back in the hospital she was asking “Will he have to have another surgery?” I told her I didn’t know…but that we’d pray he wouldn’t. She told me she didn’t want him to have any more surgeries. The more that happens to Chance I admit it does make me wonder how much it has begun to wear on Hope & Jaylen…I can only pray that instead of them feeling burdened or heartbroken that we’re not there for them quite as much…that they instead embrace one another…and their baby brother…and somehow all these trials will hold our family together and protect my little one’s hearts. I know every time Chance is hurting they worry about him and want him to be better.

Chance wasn’t fussy all day…but he definitely wasn’t himself. He still had moments where he was content on his own…the moments like these that I admire so much.

This morning Jaylen had a tough time when I left for the E.R. with Chance. He still doesn’t know much about what is wrong with Chance when things happen like today but he knew I had to take him to see the doctor. As I was about to walk out the door Jaylen ran to me crying and said “mommy don’t leave me.” He’s never said that. I’ve been working all these years so I know he’s gotten use to me leaving home. Sometimes he cries but most times he’s been just fine. He’s never verbalized that he didn’t want me to leave…certainly made my heart skip a beat. I reassured him I was going to take Chance to the doctor to make sure he was okay and we’d be right back home. He cried big huge crocodile tears and gave Chance and I both a hug and kiss before we left. That moment left me thinking at times today about how much his life has changed since Chance was born and how much his baby brother’s life is beginning to impact his own. I just hope years from now he’ll understand…I can only imagine how hard it’s been for him to go from being the baby to having his Momma consumed with another baby who has required a great deal of attention at times due to his medical needs.

We arrived home to Jaylen so happy to see his baby brother. Of course he made my day saying to me “you’re my best friend” followed by a hug and “Momma I lub you”. How can I not be totally in love with this kid?!

He was more than happy to let me take his picture too.

And he wanted to take pictures with me. We took a few photos and he had fun with it. I never take “just one” photo. I’d take a few and check them and then say “just one more”. Of course each time I’d take a few at a time. He agree to let me take “just one more” picture…not knowing I’d ask to take “just one more” a good  ten times. Fifty photos later I have a few photos worthy of sharing of me and my little man happy and silly.

Thank you all again for the prayers and sincere thoughts. Now we just keep praying that this little guy gets better and has no reason to return to the hospital.

Amanda, Hope, Jaylen, spina bifida

by Amanda Kern

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