Wednesday, December 21

Good News!!!!!

While I was at the doctor yesterday Bryce's neurologist called to let me know that the results of his EEG were normal. I felt like that would be the case all along but it sure is nice to have the definitive results.

And in other good news, the reason I was at the doctor yesterday was for a sonogram. We're excited to announce that I'm about 8 weeks pregnant! There are lots of hurdles to jump through, decisions to make and changes to follow but the official due date is currently August 4 - which just so happens to be our 11th wedding anniversary. Wouldn't it be a nice anniversary present to have a full term, healthy baby sister or brother for Bryce.

I'll be back soon with more details about the coming months. I'm just too exhausted (ohh, pregnancy!) at this late hour of 8:25 p.m.

Thursday, December 15

LISD Transition, EEG, etc.

Yesterday was one long day! We started the day at the Leander ISD transition meeting, which lasted a solid two hours. It went about as expected, unfortunately. I was still holding on to a little bit of hope that they would see Bryce, read his history and realize that he needs summer services regardless of their asinine bureaucratic nonsense. No such luck.

Mostly she said that even if we could qualify him for services what he received would be pretty much worthless anyway. And the only way to qualify him would be to stop all therapy for six months and then assess him to show that he's regressed. WHO IN THEIR RIGHT MIND WOULD DO THAT TO THEIR CHILD IN ORDER TO RECEIVE 2-3 MONTHS OF SERVICES?? It's completely absurd and infuriating.

As it turns out we may have found a way to get him private therapy through Medicaid, which if it works out (fingers crossed) for all therapy disciplines would be an absolute saving grace! It would mean that I can get Bryce all of the therapy that he truly needs for the entire summer without having to have a meltdown at Leander's district offices.

You'd think this would make me not care so much about this ridiculous system to which we dutifully paid taxes to for 7 full years before Bryce was born. Nope. I can't get past how the whole system seems to be set up so that most people don't get the services they need and are entitled to. Unless you make a boatload of money, happen to be a lawyer or both you can pretty much guarantee you're not getting a fair shake.

So that's my rant for today. Sorry guys!

After just enough time for a nap and lunch I took Bryce for his EEG, which ended up being another two hour ordeal. He was so good though. Here are some pictures of him getting his probes attached:

Don't think for a second that I don't count my blessings EVERY SINGLE DAY! I may have to put up with a lot of crap when fighting for Bryce but good gosh, he's {SO} cute & sweet AND he smiles through it all. I don't know what I'd do if he wasn't so easy going!

That doesn't mean that he sat still for the 25 minute test. Here's a fun game to play on a rainy day. Get a two year old, stick a bunch of cords to their head and then see if you can get them to be still for 25 minutes and not pull any of them off. It was a challenge but we got it done!

I kept trying to watch the screen and see if I could see anything:

I saw a lot of things that looked really scary to someone who knows nothing (ME) but finally gave up on trying to make any real sense of it. We don't have any results yet but should this week since they wanted to get them before Bryce's botox on Monday morning. I'll be sure to let you all know as soon as I do.

After the EEG, Poppa picked up Bryce to deliver cookies to some of our North Austin clients. Which gave me a chance to finally stop in and visit a dear preemie mom friend of mine whose sweet little Harper had a hemispherectomy last week. Harper looked amazing - all pink and alert and .... so far seizure free! If you can, please take a second to include their sweet family in your prayers and/or blog reading activities: Twingate.

Thanks, as always, for keeping up with the Molines.

Tuesday, December 13

Enough with the Assesments Already

We're running on assessment overload in the Moline abode these days. Bryce has endured three in the last 10 days and though he smiles and charms, I smile and grimmace.

I've just about had enough of people telling me how far behind he is. I know it's their job and I know it's for a greater purpose (setting goals, developing therapy plans, etc, etc) but enough is enough already.

Believe it or not, I didn't come here today to rant, rave or complain though. I came to update. I thought our sweet and supportive family and friends would want to know what's in the pipes.

Tomorrow morning we begin our endeavor to get Bryce into Leander I.S.D.'s Early Learning Environment. I think I've explained before that this is a school district program for children with disabilites. It should provide a classroom environment of children who are 50% disabled and 50% normally developing for up to 4 hours, 5 days a week. The idea is that the kids get their therapy there as well as an opportunity to learn from and be motivated by the other 50%.

So tomorrow we'll start what I imagine to be a fight. While I'm (too?) sure that Bryce will qualify for the program and find it likely that he'll qualify for their "full time" schedule, I'm anticipating a show down over what services he'll receive this coming summer. Since he'll turn 3 after the end of the school year and ECI will not be allowed to provide therapy services after his 3rd birthday.

I'll attend the information meeting tomorrow. Likely schedule his assesment for early 2012 and prepare myself for battle. Wish me luck because from what I understand, I'll need it.

Other than stressing about Bryce going two to three months without therapy, I'm stressing about an EEG tomorrow. I called Bryce's neuro last week after Dr. Fasci, the developmental pedi who specializes in neurology, saw him do his little spacing out number the previous Friday and suggested we let his neurologist know. They called back and said that they wanted to do an EEG before his next scheduled botox injections - which just so happen to be bright and early on Monday morn.

I'm feeling confident that the EEG will show no signs of seizure and that we're all just erring on the side of caution. But stressing, none the less.

So we'll do both tomorrow and hope that Botox goes as scheduled on Monday because we're seeing increasing signs of the last dose wearing off. Bryce is a little wobblier when sitting due to the increasing tightness in his legs and hips. And his right hand is staying more and more fisted, more of the time. It's so hard to see how frustrating this is for him. It was one thing to watch him struggle with "righty" before he ever had real use of it but a whole other thing now that he's had a couple of months of decent use.

I'll do my best to keep you all posted as we receive the results and as I know more about what to expect from the school district.

Until next time, thanks for checking in!

Saturday, December 3

Developmental Assesment Results

Bryce and I had a long (as in 2 entire hours) visit with Dr. Fasci and another doctor (name?) yesterday morning. It was a full blown assessment this time and completed exhausted the poor guy but I'm glad to have the information.

She had a tool kit of toys for testing different skills: crayons for coloring on paper (nope), puzzles for putting pieces back in (lacks the fine motor skills of a real pincer grasp and quite simply doesn't care), cups for stacking (nuha), cups for putting into each other (no), like and dislike objects for matching (almost tricked us on that one, but no). That's just a samplings of what we call the, "Not Yet" category.

On the other side, in the "Heck Yes" category, Bryce did put a simple square piece into a square hole in a puzzle-like board, he takes things out and puts them back in, he knows where several body parts are, where the door and the chair were (and therefore what they are), how to "hide" (hilarious!), clap and turn the pages of a book.

Overall, Dr. Fasci ascertained that Bryce's receptive language (what he understands) is excellent - about 18 months - while his expressive language is severely delayed (obviously) - about 8-10 months. Bryce's motor skills, major body movements, test on a 10-12 month level while his fine motor skills, i.e. pincer grasp, zippers, buttons, etc, test on an 8 -10 month level. The good news is that most of Bryce's skills are close to the same level which means that he's progressing in the same way any child does, just more slowly.

Of course, we're concerned about how far ahead his receptive language is because the last thing we want is for him to get really frustrated and quit trying to speak and sign. We're just planning to continue with the twice weekly speech therapy and keep giving him lots of different opportunities and means of communicating what he wants and needs.

Our other main concern is Bryce's fine motor skills, which Dr. Fasci wants us to work on with weekly Occupational Therapy. Apparently she either assumes our insurance covers unlimited therapy visits, that we have nothing else to do or both. But seriously, as much as I want to do everything for Bryce and make sure he has all of the opportunity he needs to "catch up" - there is simply only so much we can do.

And even though, after much torment and guilt, I eventually always come back to this conclusion it just doesn't sit well with me. So we'll forge ahead, trying to find more ways to make what we have and what we can offer Bryce enough.

Oh, and one last bit of news. It's probably nothing (I sure hope it's nothing!) but Bryce has been "zoning out" sometimes once a day, sometimes more but most days of the week. Dr. Fasci saw him do it during the assesment yesterday and said that we need to talk to his neurologist about it. Apparently this could be seizure activity or early signs of seizure activity and if it is knowing sooner would be better than later. I'm just going to need to believe it isn't right now, while going through the necessary steps to have it checked out, because I just can't emotionally deal with a thing like that until I absolutely have to... keep us in your thoughts. And thanks for stopping by!

Thursday, December 1

December Already

This year has seemed to fly by even quicker than the last. I can't believe it's already December and time for Christmas preparations. It seems like just yesterday we were visiting Dr. Fasci for Bryce's first developmental assessment. But alas that was September and our 3 month follow up is this Friday.

I'm looking forward to bragging about how Bryce now can put a ball into a ball drop toy and will actually - occasionally - hand you an object. It's the little things in our house that get us giddy with pride!

The increased speech therapy has afforded us some new perspective and though "up" is still Bryce's only official word, he is making an obvious effort to sign and communicate more. I only hope he doesn't get too frustrated by how difficult it is before his communication improves.

And to further prove the lightning fast passing of time, in just two short weeks I'll be celebrating my 32nd birthday with a visit to Dell for Bryce's next round of Botox injections.

Although I'm so excited about the gross motor skills improvement we've seen since the last injections three months ago and hopeful for fine motor improvement with the higher dose to his right hand planned for this round - I still get that sick feeling in the pit of my stomach when a visit to Dell's surgery center is imminent. Of course, it doesn't help that i still have awful flashbacks of holding him as they put him under last time and this time it'll just be me with Bryce. Oh the things a mother does.

Wednesday, November 9

Annual Update

Ok, okay so I update just more regularly than annually - just more.

So often, in fact, that I hardly know where to begin. Let's start with we saw Dr. Fasci, the nuero. pediatric developmental specialist, who we loved. She spent a great deal of time with Bryce. She made some very real assessments of his ability and was such an amazing enabler to my Bryce-advocacy that I almost forgot she wasn't his mom.

We learned that the school year doesn't just "end" for summer - that there is such thing as the extended school year. And that Bryce should qualify though the laws are sketchy and the motives for the staff to be in school over summer even more so. Wouldn't be a big deal if his current therapies weren't state mandated to end the first business day after Bryce's 3rd birthday. Which just so happens to be in the "summer off" of the school year. So there is a good chance that we'll get Bryce into the extended school year early learning environment, where he will get the majority of his therapies. I plan to volunteer for as much in the program as possible so as to be a bystander of his curriculum. Shortly after dealing with this hurdle, I'm sure we'll have another to leap as he graduates (or the district wants him to) to kindergarten.

Back to present day reality; Dr. Fasci, after repeated prodding, finally conceded that the bare minimum therapy for Bryce would be each discipline once weekly. He gets much more than that now but self pay is somewhere in the range of $100/visit. And Dr. Fasci believes that his current schedule of weekly PT, bi-weekly OT and Early Intervention with bi-monthly Nutrition is getting the job done. Her main concern was Bryce's speech/language skills. Bryce WAS getting speech therapy bi-monthly but her recommendation was twice per week sessions.

All this therapy is trying and time consuming but we forge ahead and hope for the best.

Never mind ECI (the state therapy provider) not following that "twice per week model" or school of thought they have increased speech therapy to weekly. That's twice as much speech therapy and we're already starting to see results.

Of course, we may or may not be supplementing with private speech therapy. That's a subject for a whole other post, perhaps a password protected post of the privileged nature.

Whatever the case may be, Bryce said "up" to me more times today than I can count on both hands. And that is huge for our little 29 month old , former 24 weeker, preemie.

That's all for tonight, folks. I'll try to get back to the update ASAP.


Thursday, September 22

It's Almost Supposed To Be Birthday Time Again

Time sure does fly. People always say that but it never ceases to surprise me how true it is. Bryce is now 27, almost 28, months old but Monday (9/26) will be the second anniversary of the day he was supposed to be born. So our almost 2 1/2 year old is only just now supposed to be turning 2.

It's funny how I'll never be able to forget how early he was or that he shouldn't be as old as he is. But it's impossible not to also let the day to day bog you down in how far behind he is and how much work we have yet to do.

It's been a pretty mild few weeks on the home front. Bryce has added a new therapist to his menagerie - Suzy is what was titled Early Intervention Specialist but is now titled Developmental blah, blah, blah something or another. Sorry, but the new title is even longer than the old. Basically, she helps us troubleshoot how to get Bryce's play skills up to a level closer to either his actual or corrected age. He's still not stacking things, pretending, putting things in/taking things out (except to put in his mouth) or handing things over. But on a positive note, he does enjoy the heck out of banging stuff!

It's a work in progress that I'm beginning to wonder if it isn't related to other factors. Bryce's eye sight, physically, is pretty normal but his CVI (cortico visual impairment) means that his brain often times has trouble comprehending what the eyes are seeing. Additionally, many preemies and CP kiddos have trouble with sensory input. Usually they are over sensitive to it. But we don't know - since we can't ask Bryce - how his CP effects his senses. It could be that his eyes don't fully comprehend things that he sees and touches and it could also be that his hands feeling that thing don't give him enough input about the object either. Or it could be a complicated combination of both. Either way, he still obsessively puts EVERYTHING into his mouth. Which means he doesn't color with crayons or play on the ground at the park, it limits his play even more than he limits his own play.

But I'm glad for these new revelations since understanding is always the first key in unlocking the puzzle of Bryce.

Other than the new therapy on the schedule it's been surprisingly mundane around our house since Bryce's botox. We haven't seen huge improvements but he certainly seems to be looser in his legs and I know that his right hand is so far behind, and muscle memory trained to be fisted, that it would take many, many months before we'd see a real change there. We'll be visiting with the neuro in two weeks to see what she thinks and get her opinion on another round and/or higher dose. Time will tell.

Next week marks the time of year that all preemie moms loathe. Fall. Flu season. It's funny, because this has always been one of my favorite times of the year. I love the fall weather, the pumpkin patches and the feeling of the holidays being right around the corner. But they'll be forever tainted by the scare of germs.

We'll have our bi-annual check in with the pulmonolgist and I'm so hoping we won't have to start up the daily nebulizer treatments again. It's been a nice summer off from that nightly fight.

We also have Bryce's first developmental assessment scheduled with a Developmental Pediatrician who specializes in Neurology. It's my understanding that she'll spend a good hour or two with Bryce and I, seeing what he does and asking me a lot of questions. She'll then assess where he is developmentally, compared to his actual and adjusted ages, and make some recommendations for how to catch him up.

I'm not going to lie, I fought for his assessment because I think it's important to have a clear understanding of what we're working towards and just how far we have to go. But I'm so nervous it's keeping me up at night. No mom wants to hear that her child is a year or more behind, especially at age 2, but that's what I'm preparing myself for.

Please keep us in your thoughts as this week looms just over the horizon. I promise to return more quickly this time with the results of our two appointments next week as well as the neuro follow up on Botox.

Thanks again everyone for keeping up with us - it means the world!


Thursday, August 11

Botox Baby

As usual, life with Bryce is hectic.

In the last six weeks we've gone to two new specialty care clinics at Dell: orthotic (bones, braces, etc.) and spasticity (Cerebral Palsy, neuro, high tone issues...). The clinic setting suits us well - despite half day visits that start with 5 a.m. wake up calls - because of the team approach. It reminds me so of our days in Dell's cutting edge "family centered care" NICU. We see a specialty doc along with a therapist or two, often another specialist as well as an RN and social worker. It's quite the experience.

Both times Bryce has fallen asleep waiting to see the "big man" and one of those two times I've felt like my opinion, my perspective, my questions ...well, mattered. Outside of the NICU at Dell, despite many, many, MANY doctor visits with and for Bryce, I've seldom gotten that feeling.

It was surprisingly unnerving and endearing when Bryce's neurologist teared up at seeing how much has begun doing since her last visit, six months ago. She and I have had the hardest relationship, pushing me to the brink of sanity more than once. She's not the touchy, feely type but that wasn't it - I just never felt that we got the time of day. But at the clinic she took the time to sit (literally) and look me in the eye. She explained very simply that it brings her to tears to see how far he has come, how much he has overcome. That reading his history, seeing him a year ago as a 14 month old infant, she never would have imagined he'd be who he is today.

Well, me either. I mean, I've fought for it, encouraged it, hoped and dreamed for it but always with that bit of hesitant optimism that is ingrained in me.

And let's be honest, it is so easy to get caught up in the never ending daily to do lists: one hour in stander, 20-30 minutes sitting practice, 20 minutes on all fours, spio (compression garment) vest, hand splint, messy play, reflux meds, vitamin, signing practice, never stop talking to the usual feeding, cleaning, diapering, dressing, snacking, napping, grumpy time.

This is a hard job, ya'll but I love it. Never does a day go by that I don't think how lucky I am, how much I love this little boy (no longer a baby), how astoundingly proud of him I am.

Well, another first is on it's way. And it's not what you think, what strangers never fail to ask after asking his age...he's not quite to walking. Soon enough, I see it in his eyes like the day I knew he was finally off the ventilator for good - that determined look that all at once scares the sh!t out of me and swells me with pride I never could have imagined for someone outside of myself before Bryce.

No, I'm talking about botox, baby. As usual, I'm cautiously optimistic. The neuro is rather confident that shots of botox directly in the muscles of Bryce's right shoulder, forearm and hand, as well as both hips, may give him the opportunity to escape the tightness (aka spasticity, high tone) of CP enough to develop the use of those areas enough on his own to sort of overcome the troubles of CP.

It's a scary decision to make. There is no guarantee and botox is actually a poison at its root though the makers and doctors adamantly declare it's safety. We'll start with a first round, this Monday morning, expecting the peak of effectiveness to take place about six weeks later and the effects to wear off around three months.

They took video of him with two physical therapists at the clinic so that we can be sure of results, as mild as they may first appear. If we are comfortable, we'll follow up around then with another round and presumably continue with quarterly rounds for the foreseeable future.

So off to Dell we reluctantly will go on Monday morning. They'll do the shots under light anesthesia (gas) so as not to traumatize him with the painful 12-15 direct to muscle injections. He should wake up shortly there after and if all goes as planned, we'll be home in time for lunch. Wish us luck!

Tuesday, July 5

The Long Awaited Sundae Video

Sorry it's taken me so long to get this up but I think you'll find it was worth the wait.

We took Bryce to dinner at Buca di Beppo on the night of his 2nd birthday. The food and the service were so-so at best but it was really nice of the waiter to surprise us all with this birthday sundae for Bryce.

You can pretty well tell from the video that he's never had anything like this before. He's had ice cream on a select few occasions and he's enjoyed unsweetened whipped cream on many occasions but never even a bite of a brownie.

The sugar made him a little emotional as you'll see...enjoy!

Wednesday, June 29

Bryce's New Trick!

Bryce has just this week (despite being sick) mastered pulling to stand inside his crib. He's very proud, as you can see on his face, and loves to show off!

Not bad for a micro-preemie, huh!?

Monday, June 27

Can you believe this!!??

It's been months and months of long, tortured therapy but we are well on our way to having an accomplished "sitter" in our household!! Go Bryce Go!

Monday, June 13

What a Week...

My sincere apologies for my lack of posting. As I was telling a dear friend at Bryce's party on Saturday, I sometimes feel like my blog has to follow the Thumper's Mom know, if you don't have anything nice to say, don't say anything at all.

I took Bambi seriously as a child and I guess it just stuck. I don't want to be negative and I don't want to be a downer, so when you see a lack of posts here at the blog it's likely a good sign that I'm trying to find a way to deal with something.

When Bryce was first born everything about our life was up side down, in side out and complete turmoil. These days are quite the opposite. We've settled into a routine, we rarely find that we have a medical emergency or new health issue to understand.

For the vast majority of the time, life is down right good.

But I do have my down moments.

I just prefer to bottle them up. And now that we're not in the midst of survival mode I'm able to do so much more effectively.

But my friend suggested that I be more honest - more like I was before. And since I respect and value her opinion I'm going to do my best to do just that.

Bryce's second birthday was just a week ago tomorrow but I've felt it coming on like a flu. You get a little sleepy, a little achy, a little less motivated and a little grumpy. No matter how hard you try to ignore the symptoms it always boils over into a mess of a day where you get nothing done but rest and try to let your body recover.

I HATE to equate Bryce's birthday with the flu. But let's face it, that was the best and worst day of my life. And I know that for most of our friends and family it's hard to understand how something that happened two years ago could possibly still be an open wound. But I'm here to say, honestly, that it absolutely is.

The saving grace is my precious baby Bryce - who soon I won't be able to call that anymore so I'm getting it all in while I can.

I had an email conversation with another mom last week who has two preemies. Her first is turning 11 this year and she said that she only now is able to fully embrace the celebration of his birthday without the bittersweet emotions.

It was so nice to hear from someone who got it. It's hard to find another human being who really understands these feelings. So what do you do with them? Well, I bottle 'em up, shove 'em down and keep on moving. I even went to the NICU last Monday night to do my weekly parent to parent volunteering. Wow, probably not a good idea.

I stood at the scrub sink almost exactly two years to the day from the first time I stood there and scrubbed in. The memory of the terrifying thought of walking in to see Bryce in the NICU for the first time is un-repressable. I remember so well that feeling of not knowing where I was, how I got there, what would become of my son, my life, my future. We were so sure he couldn't survive that I was in a constant state of trying to figure out how I would deal with losing my baby.

How would I go on? How would I ever find a way to be happy? How would Caleb and I get through such a trauma?

Well, he did survive - oh boy, did he! But our body remembers, the mind remembers. If you spend weeks and months preparing for a loss it doesn't just go away. It lurks in your subconscious, ever-ready to surface if necessary. It haunts your thoughts and tugs at your soul.

So there it is, there is the awful truth. As I celebrate the birth of my son I'm still working through the trauma of that birth. As we surround ourselves with friends, family, sweets and smiles - inside I'm fighting tears, I'm wondering when the next bad thing might happen, I'm fighting to stay above water until it's all a memory.

That's my coping method and while it might not be doctor recommended it's getting me through. I've been off the Zoloft for the better part of a year - the emotions may be raw and they may make me feel vulnerable but I'm feeling them, I'm dealing with them and I know eventually I'll be whole again. At least mostly.

So, I'm sorry there was no big happy 2nd birthday post. I just couldn't muster it. But I promise to post the video of Bryce eating his first brownie sundae on his birthday later today or maybe tomorrow.

And I thank my friend for suggesting openly that I get over my need to please and just be be honest. I hope it's okay with the rest of my readers as well.

Thank you all for your love, support and fellowship.

Wednesday, May 11

Feeding Woes

Hand to Hold is a local non-profit that I've talked much about before. They have a special place in my heart for many reasons and I'm always happy to help them when and if I can. Yesterday, they asked me to write a little something about our feeding issues for an upcoming project their working on. As I began to put the summary of Bryce's feeding issues down on paper it occurred to me that perhaps I should share with all of our readers as well.

Many of you and most parents can't appreciate the struggles related to feeding babies that have been intubated and/or hospitalized for long periods of time. It's hard for the parent of a normally developing child to really get the stress but I think most can imagine that they'd be terrified if they couldn't be sure their child was getting enough nutrition, enough fluid, enough nourishment to not only thrive but just to survive.

This is a very real problem for many parents and this is our "feeding story:"

Bryce's extreme prematurity meant that at birth he was unable to breathe on his own. He spent five long months in the NICU at Dell trying first to survive, second to breathe independent of equipment and finally to nourish his body with my milk.

It would prove to be breathing that would be Bryce's biggest challenge. It took four months on and off various ventilators before he was finally successful on high flow nasal cannula. Of course, as all preemie moms are aware, that just meant it was time to face feeding - no small hurdle in itself.

After being intubated with a breathing tube for so many months Bryce's "suck muscles" were weak and trying to feed from me or a bottle took so much energy that he would tire out well before filling his belly. We supplemented with tube feedings by way of an NG tube for weeks while trying to build his eating strength and coordination. We were grateful that he rarely aspirated while feeding but as time wore on it became obvious that if we didn't take Bryce home with a feeding tube he would either remain in the NICU for the forseeable future or end up catching some nasty hospital bug.

So we swallowed our fears and began our NG placement training. There really is nothing worse in our books than holding your infant son down while shoving a tube up his nose, down his throat and into his tummy. Oh and be sure not to hit the lungs, which is really just luck (especially since he's screaming the whole time), because then when you start the feed you may drown your child. Not sure if it's in the lungs or stomach? Well when you're in the hospital under strict supervision for placement you just take a quick listen with the nearest stethoscope but when you mention buying one for home use your reprimanded for being to NICUish and not enough Mom-ish. Oy vey.

It's easy to laugh off the stress of the ordeal as we look back now but it really was a true test for us. We now compare all things to the torture of placing an NG tube - ALL things.

Hand, foot and mouth disease, suppositories, baby puke and diaper blow outs all pale in comparison. If there were such a flag that read, "If I can place an NG, I can do anything," I'd proudly wave it high. I'd even get one of those cheesy mini flags for my car. Maybe one for Caleb's truck too.

Eventually though they let us take Bryce home with us and just like all the cliches you hear, he almost immediately began to grow bigger and stronger. After just a few short weeks at home we took out his NG tube, for what would turn out to be forever.

We hardly followed the book, or the doctor's advice for that matter, when we decided enough was enough. But it was the holidays and we felt that as Bryce's parents we knew him better than anyone. So together we made the joint decision to pull the tube and hope for the best. We could only pray that lacking those extra calories he was getting through the tube his desire to eat enough on his own would kick in. And thank the Lord, it did.

We were blessed and oh so grateful to place it finally away in the medical keepsakes box where it remains today.

(Yes, we have a medical keepsakes box. And it's full of blood pressure cuffs, hospital ID tags and myriad other odd momentos. No, I don't know what I'm going to do with it so for now it just stays safely put away in the closet. Yes, I know that's weird. And, no I don't care!)

Of course, our feeding struggles by no means ended the day we decided Bryce would no longer get supplemental feedings by way of NG tube. But we know enough to know just how lucky we are that Bryce's oral aversion was minimal. He always liked pacifiers, seemed to enjoy taking his milk from a bottle and overcame a texture issue with stage 2 foods in just over a month of daily trials.

We're painfully aware that this isn't the case for all parents but that is why Hand to Hold is so important. Because they have the unique ability to put those parents together and let them explore possible solutions, vent about frustrations and take solace in knowing they aren't alone.

I can only hope that our story will help another family along the way.

Thursday, May 5

POST traumatic stress disorder

I guess the thing about PTSD is it can hit you anywhere, anytime. You might be perfectly happy and just enough distracted by this, that and the other that you don't even see it coming. That's how it happened to me this morning.

Standing in line at Starbucks I recognized a glassy-eyed look on another woman's face. I saw in her blank stare that while she was standing right next to me smiling politely she was all together somewhere else.

My mind instantly and without my control went to the days that Bryce was his sickest and I'd escape the NICU for 10 or 15 minutes to walk to the nearby Starbucks. I was never where my body was, my mind was always with Bryce.

There were so many days that I spent all of my energy fighting back the sinking feeling that I was going to lose my precious baby boy. This child who had spent so little time growing inside of me and even less time where I could see him and occasionally touch him. I felt like at once I knew and loved him more than anyone else in my life and like I hadn't yet had a chance to really know him and love him for who he could be.

So I'd walk around Dell, down the busy streets in the blazing heat to a familiar place, because all Starbucks are the same, and I'd order my usual. I'd stand there in line and smile vacantly at strangers wondering maddeningly how all these people could go about their lives so nonchalantly, how could they go for coffee, laugh at dumb jokes and worry about their petty problems.

Didn't they know I was losing my baby boy!? Didn't they know that as we stood there he was fighting for his life!?

It's been about a year and half since Bryce came home from Dell and just a bit longer than that since we've been sure we would get to see him grow bigger and be his own person.

It seems it's just long enough to distract yourself laughing at dumb jokes and worrying too much about things that don't really matter. But low and behold, it's not long enough to forget that awful feeling, it's not too long to find yourself suddenly fighting back tears and feeling as if you'll throw up while waiting for your morning coffee.

Every day, thousands of babies, just like Bryce, are born too soon, too small and often very sick.

Wouldn't it be an awesome tribute to Bryce's incredible fight to have a huge group walking in his honor this Saturday?

But, if you can't walk with us, please help by donating to our team. To make a donation or sign up to walk with us visit the teamBAM! page.

Thank you for helping us support the March of Dimes in their mission to give all babies a healthy start!

Tuesday, May 3

March for Babies THIS SATURDAY

Since you've all heard or read my plea regarding the March of Dimes I'll spare you the long version and just say this...

Medical practices and medicines responsible, at least in part, for Bryce's survival were discovered by March of Dimes' researchers on money raised by them and people like you and me.

Please help us help them save even more babies lives by walking with us this Saturday, May 7th at 9 a.m. at Auditorium Shores right here in Austin, Texas.

What better way is there to spend your Saturday morning then helping save babies lives?

Come by, see Bryce and walk with us!


teamBAM March for Babies Walk Day Details:
  • We'll be there by 8 a.m. with light breakfast snacks, coffee and ... t-shirts!!
  • The walk starts at 9 a.m.
  • teamBAM will have a blue 10' x 10' tent set up just for our team where you can meet up with us anytime before 8:50 a.m. (after that find us in the crowd getting ready to walk)
  • When you enter Auditorium Shores from Riverside Dr. our tent will be on your left (as you walk toward the water) kind of between/before the large BBVA Compass tent and the huge Family Teams Tent
  • We'll also be around after the walk for at least an hour for fellowship and ... t-shirts!!
  • Riverside Drive will be CLOSED from Lamar to 1st St.
  • Paid Parking will be available at:
- Palmer Events Center Garage at 900 Barton Springs Rd for $7
- One Texas Center Garage at 505 Barton Springs Rd for $7
- Austin Convention Center at 500 E. Cesar Chavez for $8
  • Don't park at Hooter's, Auditorium Shores lot, Homestead Hotel or in nearby neighborhoods as they will be towing. (And please don't make me tell you I told you so, ha!)
  • Tug's BBQ will provide sausage wraps and chips for just $1 and part of the proceeds will go back to the March of Dimes!
  • In an effort to go green there will not be water bottles provided this year but there WILL be "WaterMonsters" to fill up your own cups/bottles

Monday, April 25


It's that time of year again, the March for Babies is Saturday May 7, 2011 at Auditorium Shores.

PLEASE walk with us, buy a t-shirt and help us give every baby a fighting chance!

T-shirts are only $20 this year and $9 of that goes straight to the March of Dimes. (Yes, that mean's they're cheaper than last year AND each shirt raises more money for the babies than last year's!)

Want one? You know you do!

Just shoot me an email with how many and what size, I'll order them and pay for them and you can pick them up the day of the walk or I'll personally pay to mail it to you if you can't make it on walk day.

I've been very busy with Bryce, work and my March of Dimes parent to parent volunteering and so have unfortunately fallen behind on our teamBAM works for the year so I need to know ASAP if you'd like a shirt.

PLEASE let me know today or tomorrow so I can make sure we all get them!

Here is what they look like...

teamBAM! t-shirt front:

teamBAM! t-shirt back:

If you're gett ing this email, reading this blog post or otherwise seeing this than you know that Bryce struggled for many, many weeks in the neonatal ICU after his extremely premature birth just to survive. He weighed only 1.5 pounds at 12" long, his eyes were fused closed for weeks and he could not breathe on his own for many months.

Every day, thous ands of babies are born this way: too soon, too small and often very sick.

And it's the March of Dimes' research that is helping these babies fight for their lives. It's the artificial surfactant and nitrous oxide therapy that were discovered by researchers funded directly by the March of Dimes that gave our Bryce his fighting chance. And look at him today.

Wouldn't it be an awesome tribute to Bryce's incredible fight to have a huge group walking in his honor May 7th? We think so! That's why we've created teamBAM!, and that is why we hope you will walk as part of teamBAM at Auditorium Shores on Saturday, May 7th at 9 a.m.

If you just can't make the walk with us, please help by donating to our team or purchasing a t-shirt.

To make a donation or sign up to walk with us visit the teamBAM! page, to order a shirt email me with the size and quantity you want.

Thank you for being a champion for babies!

Tuesday, April 19

Another Family Sunday, Another Bryce First

Bryce has the uncanny ability to do a thing out of the blue as if he's been doing it forver (and you haven't been working tirelessly to get him to do it for months) and then not repeat said action for what seems like forever. It's ironic, it's funny to quip about but it's so frustrating!

For instance, just two and a half weeks ago I posted that Bryce had pulled up for the first time. I was very excited. So excited that I forgot about his track record on these kinds of moments and expected he'd do it again in a day or two. Well, two weeks to the day, with the same occupational therapist here to see, he pulled up for a second time.

It's like when he said apple, or up or yummy. He said them - clearly. But once and only once. It's also kind of like how he has figured out that I can't not laugh when he sticks his tongue out and turns his head up to a food offering at meal time. Except that one he's beginning to make an unfortunate habit out of. (Note to self: must stop laughing at inappropriate behavior.)

That is all besides the point though. My point is actually that we had a splendidly lazy Sunday. The weather was spring-like and beautiful and we were blessed with surprisingly few things to do. So we took Bryce for his first picnic out on the green lawn behind the Arboretum. We had a great time lazing around on the soft, lush grass.

And Bryce FINALLY drank from a straw. Not just a straw, but also a sippy cup. It's the little things that seem to bring the greatest joy. He picked up his cup, took a big gulp like he'd been doing it his whole life and ... wait for it... is still doing it!

It's like he found his desire for fluids finally and is making up for lost time. I must have spent several minutes through out the day today just sitting back and taking in him drink from his cup.

I know it's silly, but this little achievement is huge for me. Bryce may be behind, very behind even, but he's getting it all - in his own sweet time, of course. Bryce style - Bryce time.

Here are a few pictures from our picnic:

Bryce and Mommy

Bryce and his very first, very own hamburger. He ate very little of it but enjoyed very much of what he did eat. (By the way, 5 Guys Burgers and Fries really are good - just ask Bryce!)

Bryce sitting!!!!!!!! By himself!!!!!! He does this on occasion. We've only been working on it physical therapy (and every other day of the week as well) for months and months. He just doesn't have the desire to sit for long, he'd much rather be going, going, going.

Wednesday, April 13

Wah, Wah, Wah

It's been a long few days. Bryce starting feeling poorly late last week and by Saturday morning, Caleb's birthday and the day of his and Jeremy's annual shared birthday crawfish boil at our house, I'm taking Bryce in to our pediatrician's after hours clinic.

Turns out he has an ear infection, only his second ever and the last one was the day of his first birthday party. Did I mention Bryce still has quite gotten the whole timing thing down? Poor guy.

Not to help matters much, both Caleb and I had been feeling progressively worse since late in the week as well. But we put on a happy face and had a truly great time on Saturday. It's so nice to celebrate someone who means so much to us and does so much for us - to little or no fan fare most of the time. I just wish Bryce had been feeling up to celebrating too.

Unfortunately, Sunday meant yet another day of not feeling great for our entire household. We took it easy, blamed the pollen and went to bed early. Monday morning though it was hard to argue that I too was down right sick. I'll spare you the disgusting details and just say that when I finally gave in and drug myself to the doctor yesterday I was diagnosed with not one, but two, awful ear infections AND an upper respiratory infection. Wouldn't it be easier just to say the entire top half of my body was snot logged and miserable? Seems a more fitting description to me anyway.

It made me realize a couple of things though.

First: poor Bryce! If I feel this bad he must be feeling pretty awful himself. He's not sleeping through the night in almost a week now and thank God Caleb's been able to stick around and help, I don't know what we'd have done otherwise.

Second: I haven't been sick - like really, really sick - since I had my tonsils out about 5 years ago. Boy, I do not miss those useless bacteria-laden tissue balls in the back of my throat one stinkin' bit.

Third (and this one is never surprising for long): you so do not appreciate how awesome it is not to be sick until you are. Bummer about life, that one is.

So, as I lay me down to sleep all I ask for is a full night's rest. I hope Bryce finally gets to sleep through the night and therefore I do as well. Though since he's 4 days ahead of me on the antibiotics I'm not going to get too optimistic about my own prospects. In case, like most adults, it's been ten or more years since you've had an ear infection - they freakin' hurt!

Wish us luck!

Night, ya'll,

Thursday, April 7

To Be or Not To Be

I was just thinking the other morning that we are so blessed to have so many wonderful people and organizations to turn to for help and support. Bryce's preterm birth was catastrophic, it was at once the single best and worst thing that has ever happened to me. It tore my heart into tiny pieces and nearly two year later I'm still struggling to mend it back together.

But let's face it, I'm no spring chicken and if there were another baby in our future it sure seems like that better be the not so distant future.

This is a topic that weighs heavily on my mind. On any given day that you ask me if we plan to have another child (and seems that I am asked almost daily) I might give you a different answer.

The truth is that I don't know. And furthermore, I don't know what the right answer is.

I am an only child. It's got its perks, to be sure. But I'll never know what it's like between siblings, that person who's known you your entire life, seen you at your worst (i.e. braces, junior high, bad hair) and your best (mother hoood). The one person who you don't mind calling at 3 a.m. when your freaking out over this, that or the other. I see it with my friends and their siblings. I see the struggles and the tension as well, but it's the unbreakable bond I envy most. It's that bond that I can't quite understand that I want for Bryce.

I want to be able to give Bryce a partner in life. A partner who looks out for him, pushes him to be his best, a partner in crime and family for after we're gone.

It's funny, because just as I'm searching endlessly for answers to this burning question I come across the Hand to Hold newsletter in which the article, "Pregnancy After Preterm Birth or Loss" is conveniently placed.

It's a lot of information I already had but it's also some new insight. And all in one neat little package that I can really sink my teeth into. Thank you Hand to Hold, for continuing to surprise me with your support and resources.

Of course, the decision involves many more factors than any article could possibly address. It's a very personal decision in the best of situations. It's a decision in which a black and white right or wrong can never be.

And then there's the financial aspect. Individual health insurance policies, like ours, are ridiculously expensive. But the only option for those of us who don't work for corporate entities with the large numbers of employees necessary to offer a group plan. You'd think for the steep premium they'd offer maternity benefits but oh no, pregnancy is, after all, a "desired" state.

With a pregnancy history like mine (going from lowest of low risk to highest of high - literally over night) there is simply no way we could ever afford to pay out of pocket to have a second baby. There would be a likely cervical cerclage to begin with, followed by steroid dosing before we were even clear to begin trying, then cervical monitoring every couple of weeks from the beginning, progesterone supplementation after only 16 weeks, and well, the list goes on and on.

What will be will be. But it sure helps to vent to the world about it. And it doesn't hurt to remember how lucky we are to have our little miracle with us today. The first time I saw Bryce I could only think that he wouldn't make it, that there was no way he could survive the turmoil of his birth.

But look at him now!

Monday, April 4

Another First!

Today Bryce finally found the proper motivation (trouble) to pull himself up.

Mind you we've only been working on this for about a year now. We've actually been coaching him for months on how to pull himself up onto the rail of his crib. We work on it daily, often many times a day.

He's always proud when he gets there but he rarely really does all of the necessary work. Don't get me wrong, it's not his fault. His right hand (aka "Righty") stays clenched into a tiny, fisted, balled up mess of fingers and tension whenever he's struggling to do something. It's pretty hard to pull up on things one handed.

But we've learned that if an object is far enough away that Bryce has to fully extend his arm to reach for it he's more able to get his right hand fully open and to then close it onto the object.

And today the stars all aligned in just the right way so that Bryce was able to leverage off the ottoman a little, the couch a little, reach way up to the top of Mommy's scrapbooking bin while pulling his knees up under him and then getting all the way to his feet all by himself.

And as if that weren't enough - his Occupational Therapist was here to see the whole thing. Because otherwise I'm pretty sure there would be some skeptics in the family.

It was an amazing, unbelievable sight. I small "step" for an average boy but a remarkable achievement for this extra special boy!

And I even had the opportunity to snap a couple of quick pictures:

And here he is already thinking about all the other things he can get into from "up here!"

Wednesday, March 30

Adios, Synagis!

During the flu/RSV season this year and last Bryce has been receiving monthly synagis shots. They're essentially a very, very expensive ($1,800/shot) immunization. We had to go through a lot of back and forth to get them covered this year by insurance since Bryce had been home a full year. But in the end the did it and he didn't get sick.

Today Bryce had his last Synagis shot - likely forever!

We saw a special pediatrician monthly for half the year for these shots so we had grown accustomed to the staff at ARC Far West's pediatric clinic. As Dr. Lingle left the room today (after bragging about how great Bryce looks) I overheard her tell the nurse that it was bittersweet.

I think, no - I know, that if Bryce understood he would disagree. He would be ecstatic not to have those awful pokes every month. I know I'll miss the sweet ladies of Dr. Lingle's office but I sure won't miss holding him down for that huge needle!

Sunday, March 27

Swinging & Grilling

Bryce loves his swing, Daddy loves to grill...

and my favorite thing to do is hangout out on the porch pushing Bryce in the swing and enjoying Caleb's cooking!

It's a Good Day

We had a yummy breakfast at Central Market Cafe, followed by a stroll through the Zilker Garden Festival at the Zilker Botanical Gardens. Now, with bellies full of Zilker nachos, we're on the Zilker Zephyr for a train ride through the park!

What more could we ask for? Maybe a bit of sunshine, that's it.

Thursday, March 24

First Day of School

Bryce had his first day of "school" today - he began his two days per week schedule at Bright Star Academy.

As you can see, it was no big deal to Bryce. Mommy on the other hand nearly had a panic attack, despite several visits over a shortened day, spying via the lobby cameras and never being more than 5 miles away.

Sunday, January 16

Barreling Into Our Lives

I believe that most of our readers are familiar with Bryce's tumultuous beginnings and most of you also know that there are a hand full of organizations that I credit with helping us to get through the hardest time in our lives. One such organization is Hand to Hold, a local Austin non-profit that works solely with the parents of preemies by providing resources, peer mentoring and community to a group that tend to otherwise feel thrust out into a world of doctors, therapists and special needs all alone.

Well, this month we are the highlight family for Hand to Hold's website. Please take a second to refresh yourself on the story that brought you to us all those months ago and consider supporting this amazing organization:

Barreling Into Our Lives

Sunday, January 2

New Year, New Bryce

With 2010 soundly behind us I now have the ability to look back at a full year of having Bryce home with us. We were busy, busy, busy trying to help him be all that he can be (to knock off the army).

We had 52 straight weeks of physical therapy, occupational therapy, speech therapy, dietician counseling, doctor visits and specialist check ups. We also had some real moments of panic and some very real moments of awe. We learned that just because there is a tried and true way to teach a CP preemie how to do new things there also may be an equally effective alternative. We've spend a lot of time pushing, pushing, pushing only to be left frustrated and defeated. But then a week later see the fruits of our labor come into a full bloom.

And so, as this new year begins we begin anew with our efforts to afford Bryce every opportunity we possibly can to be the best Bryce he can be. We have the support of our tireless family, some wonderful organizations (Hand to Hold, March of Dimes, Graham's Foundation) and the best therapists we could possibly ask for to help us navigate this winding road.

What on the itinerary for 2011, you ask? Well, crawling. And sitting. And words. And eventually, hopefully walking.

In 2010 we witnessed Bryce progress from essentially being a newborn on oxygen with serious feeding issues, who just so happened to actually be 6 months old, to being developmentally a 6 month old who rolls, babbles, mimics and loves to make you laugh. It's not as much change as a "normally developing" baby would make in a year but it's truly remarkable for Bryce.

Unfortunately, for Bryce we now know how much he is capable of. And so our immediate goal is to put almost, kind of sitting and rolling as a means of transportation behind us to focus on a Bryce who sits at will for extended periods of time and uses crawling as his means of getting where he wants when he wants.

And we're off to a great start already. My dad and I are working on an "anti-rolling device" that will make rolling impossible for Bryce while on the floor. He mostly hates it but as you can see from the videos from yesterday with the prototype, he's taking "baby steps" already.

Just One Good Push


We thank you all for continuing to stick by us as 2010 flew by and 2011 begins. May you all have a wonderful, productive and rewarding new year!