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Sunday, August 15, 2010
Wednesday, November 19, 2008
Tuesday, August 19, 2008
Saturday the boys got up early to go fish and the mommas and babies weathered the weather. It's raining, it's sunny. Raining. Sunny. Rain. We napped, had a nice lunch, and then hopped in the car and drove to San Antonio for a housewarming. As usual, Miller was a ham but he had to hit the sack-which he thankfully did-while we caught up with some old friends.
Friday, August 1, 2008
Manual therapy is REALLY helping Miller. He is much more flexible, has better range of motion, and his body feels more soft and supple. Just a few months ago he felt like a baby body builder because his muscles were so tight. It seems to be giving him some freedom to get back on track developmentally. Not necessarily caught up, but back on the track. That's where OT comes in. We are supposed to be working on fine and gross motor skills...with initial goals of sitting unassisted and crawling...and I guess we are. In order for Miller to succeed in OT, he really has to become more comfortable with another person handling him. Being locked up for the 1st year of his life has made him a little more of a momma's boy than he might have been had he made a timely entrance. Slowly, he is relaxing in therapy and we are getting more accomplished. We are probably going to begin PT again soon to complement his OT + manual therapy. At the moment, we're all encouraged!
We made it to Chicago and back all in one collective piece. I was surprised that the travel, with a little extra preparation and a couple of minor glitches, was relatively easy. I was all proud of myself as we marched through the airport to our gate. Most airport personnel were helpful or at least patient, and Miller was an absolute angel. It probably didn't hurt that he was flirting with everyone who looked his way. I feared that he'd be overwhelmed with the hustle + bustle, but he was in a giggle mood and that was a gift. When we took off, I gave him a bottle as recommended by mothers who had navigated these waters before me. Ears popped, no problemo. To keep him busy in the beginning, I shared the potatoes from my breakfast taco with him. And then we 'encountered some turbulence' and I encountered some vomitance. Not spit up. Puke. The gods of travel were hazing me and I was not going to be broken! After some cleanup (with my permasmile in place), I took Miller to the back of the plane for a little pre-nap shhing and rocking. One particularly miserable flight attendant kept telling me I was blocking the bathrooms (which I was not) and that we needed to return to our seat. We ignored her. Motherhood has given me a newfound sense of confidence, in all types of situations, to just do the best thing for my child. Whether it's the in thing to do or not. When we were good and ready, we did return to our seat, and Miller promptly fell asleep. When he awoke, it was almost time to land, so we passed the rest of the time either playing the 'Boooiiiiinnng!' game, or looking out the window.
Being in an unfamiliar place with unfamiliar people was the big challenge for Miller. He wasn't always his sunny self, but he wasn't necessarily a crab either. Just a little out of sorts for a few days. His sleep patterns were nonexistent and in turn, so were mine. He was more comfortable in some situations than others, and occasionally let someone other than me hold him. Big props to MLP for being an ANGEL in church! He was not the baby who was crying during my Godson's Christening, thank God. We survived it, and now we know we can do it all by ourselves...though it would have been a piece of cake if daddy were there.
Didi, her son Bexley, MLP, + me
Last Saturday was a little tough on me because it was Miller's original due date. Yes, I know, babies rarely arrive on the exact day scheduled (unless they are actually scheduled), but it's still the day we thought would be Miller's birthday. A Leo. But he's a Taurus and that still stings. Mostly, I celebrated, concentrating on what a blessing it is that he's here, he's healthy, and we're on a good path. But I'm human. And when I look into his sweet little face, I still feel guilty that he came too soon...I want to fix it all and I still sometimes wonder if I could have changed anything. I am sure this is a big part of what propels me to endlessly search the Internet, make countless calls, read until my head hurts...about what we might be able to do to help him reach his highest potential. What has been sticking with me lately is the fact that he wasn't born like this, with a brain injury. It's a post-birth injury, though it's most likely due to his early arrival. He was going to be born normal, without any extra or missing parts, and something happened. It's all so unfair to him and the weight of that is still wedged firmly in my heavy heart. We went to a wedding that evening, and toasted someone else's new beginning.
Tuesday, July 8, 2008
One year ago today we brought Miller home from the hospital...10 weeks and 6 days after he was born. We were full of hope and fear, not much different than any other set of parents bringing a newborn home. We knew we would be forever changed, but we had no idea just how much would change for us just this year. It's been so much easier and so much harder than we could ever have imagined.
Just for fun, here are some recent videos for those who don't see Miller on a regular basis...
DP was feeding Miller and he got excited and gagged on his spoon. Miller was SO mad at us. Ok just Danny. But then I think I made him mad b/c I was laughing so hard at the face he made...he gave us 'the lip'.
Swimmin' on the 4th of July...I am fully aware that I have Blublockers on.
Miller's favorite big boy food is avocado. So today I decided to mash one up in my baby food mixer...and take a video of course!
Miller is FINALLY playing in his exersaucer. This video was taken about a month ago...he's trying to escape
Saturday, June 28, 2008
Miller got new glasses! Well, he got a new prescription and we decided to try another shape. The most neutral color this shape comes in is Royal Blue.
Monday, June 23, 2008
It's quite a challenge for me emotionally. Back to that damn rollercoaster they always talked about in the NICU. I think in analogies mostly, and I hate that one. Rollercoasters are fun, they are for amusement. There is nothing amusing about the anxiety that comes with trying to discern the diagnoses of the doctors and advice of the therapists...especially when they all seem to be mild to moderately conflicting. We have doctors telling us that he has 'mild to moderate CP'. Click here to read about Cerebral Palsy. We can handle hearing this, but it's tough to tell friends and loved ones. I can physically feel their hearts drop as they break into a sweat and struggle not to flinch and to say the right thing. There is no perfect response. Just don't disappear. Ask questions if you want to. The fact is that nothing changed from the moment before we had a diagnosis to the moment after. It's obvious that Miller is delayed and has motor challenges. It doesn't take a brain surgeon to tell us that! I couldn't resist that one, pardon me. The tough part, after getting over the initial blow, is that not everyone agrees on this diagnosis. What's more, no one agrees on exactly how to treat and what's treatable. Opposite ends of the spectrum actually. So Miller has seen 2 PT's, one OT, a pediatrician, a neurologist, and a neurosurgeon. He is also participating in the Developmental Assessment Program at Dell Children's...where they have their own PT's, OT's, NNP's, and Neurologists...AND OPINIONS. And just for good measure, we are still involved with ECI.
Danny and I are just doing the best we can with all of the information. We are doing our best to find the right 'recipe' for Miller. The great challenge here is that recipe will have to change with Miller as he changes and develops. What if Oreo had to change their recipe every 4-6 months? Maybe not the greatest analogy, but you see what I'm getting at.
There are plenty alternative therapies and treatments out there too. But you have to get out your Inspector Gadget cap and ride around in your Go-Go-Gadget Copter to learn about these. And lots o' luck trying to figure out what's real and what's hocus pocus fairydust!
And then there's dealing with insurance. [sigh]. For the first year, we had absolutely no problems with insurance. Relatively speaking, Miller had a fantastic first year. He got out of the hospital earlier than expected, with no major infections (no minor ones either), no surgeries. Off his reflux meds by January. He's a GREAT eater (this can be a real hairy problem for preemies and brain-injured babies). He's had nothing more than one tiny little runny nose. All of the above are what's expected in the world of preemies, and much more. So in my opinion, the insurance company has saved a ton of money on us! Add to job description: "must be proficient at finding loopholes in insurance policies"
For the past few months Miller has been changing at lightning speed. And those changes have been accompanied by a dirty rat called Tone. Miller has increased tone in his arms & legs, and decreased tone in his trunk. It's making it really tough for him to make developmental strides. He is still having trouble sitting unassisted and he's not crawling. But he is trying! It's not easy on him. He wants to be mobile, but his little muscles are working against him. We are now in therapy once a week, and of course we work his therapy into just about everything we do on a daily basis.
Miller is a really,really, happy kid. And he really has an incredibly sweet spirit. I have a habit of completely smothering him with kisses. He doesn't love therapy but we try to make everything a game and much of the time time it works. He quite the mama's boy, so handing him off to a therapist is still a little further down the road.
He's going to be better than okay. And so are we. In fact, we are already great! In life, there are always challenges. I have this theory that in Heaven we get our 'book of challenges' and then we come down to Earth and face them all. That each challenge in life is specifically designed for us, and it's totally how we deal with it that determines our fate. I could go on forever about this. So now, I am praying about purpose, guidance, patience, wisdom...to be guided to my purpose, with patience and wisdom and love.
So to all of our lovely loved ones, thank you for being our 'Village'. If only I had Snoopy Gramma to hold me for a moment, in her housedress, her long hair tucked up into a bun, and rock me in that chair...tell me stories about the birds outside. I would take a deep cleansing breath...and smile. Sometimes you just need your Grammy.
Tuesday, May 27, 2008
At the Greenleaf's...
I think he just looks so sweet in his glasses when I can keep them on him!
After March for Babies...
Last Sunday night I returned from my first out of town trip (besides Kerrville which does not count) in over a year. My first stop was Miller's room where I found him sawing logs. 'Allergies', I said to myself while sneaking in an extra midnight bottle in preparation for Monday's MRI. Monday morning came too quickly, especially since we were up at the crack and not allowed to feed the hungry little monster also known as Miller.
At the hospital, tears flowed and so did one tiny little nose. Like a faucet. It's because he's crying so much, I'm sure. He never cries like this. Two days later Danny and I stopped denying that our allergies were acting up and admitted that we, as a family,had a collective cold. We also discovered on Monday that we were a little off a few weeks ago when we said Miller was getting a new tooth. It's actually 5 new teeth. All at a different pace. Poor baby! It's so funny to look in that little mouth and see a bunch of jagged little chicklets. And he has been 'testing' them...it sounds like he's chewing on rocks and it makes the hair on the back of my neck stand on end.
This weekend was just what we needed. Lots of family time. We had circus animal-shaped waffles two mornings in a row. Danny fished. We spent an afternoon with friends. We went swimming three times and even went to the Austin Wine Festival at The Domain...which should really be in October or November. Wine is not quite as good when it's hot and sticky. It was all time well spent and I am sad it's over. Everyone loves Miller's strolller though. People come up to us all of the time.
We always open our mouths when we laugh now...I guess it's a reflex from trying to get Miller to smile for the camera.
I almost forgot to mention the March for Babies!! It was over Mother's Day weekend and we had a great time. I was kind of a crazy person, but that's just because I wanted to walk with everyone which is totally impossible. It was a huge success, even though it was 4 miles! Next year I think it's going to be a little bit shorter...and we're probably going to tailgate like we're at a football game anyway.
Here's a photo of the last people standing after the March for Babies sweatfest...those not pictured are off stuffing their faces at the sausage wrap booth or are in a nice, cool air conditioned car heading home.
Saturday, May 3, 2008
Miller had his first birthday last Wednesday! We decided not to have a party since Miller's still not a huge fan of crowds. We did, however, have cake with a candle, a party hat, a gooey mess, and the big finale...tears! I'm not exactly sure why he was crying here, but I'm pretty sure it's in the babies' manual under 'what to do when mom's trying to get a cute picture of you for her birthday memories'. The rest of the day was very happy!
On Sunday we met up with the family at the Salt Lick to celebrate Grampaw's birthday. Here's a picture of MLP + Dad (above).
A lot is happening with Miller right now. At our one year/9 month checkup we confirmed that Miller's had a bit of a growth spurt. His head is still growing at a normal rate so we're not currently worried about hydrocephalus. Yes, this is still a potential worry, until about 18 months.
Recently, Danny was in charge of getting Miller in his jammies & ready for bed. Obviously, he's grown out of these! Being the great problem solver that he is, Danny found a quick solution to Miller's growth spurt. Take a look at the photo...
He's doing a great job eating, too. This can be a BIG problem for preemies, but Miller's been defying the odds on this one since the first time we gave him a bottle back in the NICU. He still eats 20-28 oz of milk everyday, but he also has solids twice a day. Just like his momma, he's no fan of the green veggies. Sometimes we give him a 'cookie' (biter biscuit), but we do it more for motor skills than food. Lately he's showing lots of interest in our food when we're eating, so we'll give him a taste here and there. When we go to take a bite of something, he'll smack his lips together and stick his tongue out...sometimes he opens his mouth. It's so funny! We learned that he likes pickles, peanut butter, toast, potato salad, and oreos. No, we don't feed him any of this on a regular basis, but a teensy taste here and there is good for him. He needs practice 'integrating' new tastes and textures...another potential challenge for him. On Wednesday we discovered a new tooth popping through-this makes three!
After Miller's pedi appt we decided he'd outgrown his infant carrier/carseat. So, we got him a big boy carseat that's supposed to last up to 65 lbs. I picked 'Mossy Oak'...it's sooooo cute! He looks like such a sweet little man in it.
Recently we've noticed a lot of changes with Miller. He seems to be turning a corner developmentally, which is very encouraging. However, we are also beginning to recognize what could end up being some potential permanent challenges for him. They are definitely challenges right now, but we are hoping that with the right kind of attention/therapy/etc., he'll have a great chance of overcoming many of these challenges. In the past couple of weeks we have really begun to focus on what additional things we might be able to proactively do for him, rather than just 'wait and see'. We're pretty much over that.
On Friday we went to see a new physical therapist to have Miller evaluated. He's actually not new to us, but he's new to Miller. Mark is Danny's former 'body guy' from his baseball days who is a manual therapist, and Danny trusts him implicitly. Back in the day, Mark helped Danny avoid surgery. As it turns out, Mark has worked with some kids that have some pretty significant challenges and has had some great success with them. For us, he brings a perspective that we are desperately seeking. He's both basic and innovative, and he assessed Miller as an individual rather than a 'preemie, 26.5 weeker, grade IV hemhorrage'. No kid is the same, and no preemie has the same course. We have been feeling lately that the traditional protocol with preemies and children with birth injuries are more observed than anything. Like they are waiting for him to 'not crawl/not walk', etc. and then use therapy to help his situation. Not to say he's being neglected, but the individual plan seems to be missing. Within moments, we felt like Mark had a pretty good understanding of where Miller is now (as opposed to where he maybe/possibly/could be/might be headed). In addition, we really felt like he had very basic but thorough explanations of what we can do for Miller right now, and why these things are important. We are not looking to Mark (or anyone for that matter) to 'fix' Miller. We are simply looking to find more ways to help Miller right now.
Next week we are also getting an OT evaluation. It might be a little early, but we'll see. He's quickly developing both fine and gross motor skills, learning balance, learning to sit, learning to crawl, etc....these are things OT may be able to help us with.
On top of all of this, we are going to see a neurologist on Tuesday for an evaluation. I am so nervous and excited! It's our first time meeting with a neurologist and I am anxious to hear what he has to say about Miller. I am definitely OVER hearing how good he looks. While this is encouraging and we do feel incredibly lucky, it doesn't mean we'll settle. We're shooting for the best possible outcome for Miller. We owe this to him! So, whatever his opinion is, we are prepared to take that information, process it, and use it as a tool to move forward with formulating a plan for Miller's success.
That's it for now...below I pasted the worst picture of me EVER. However, Miller looks so funny & cute, I had to take one for the team..He LOVES to get on my shoulders!