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Sunday, August 15, 2010

Better late than never


It's been so very long since I've been brave enough to post.  This is due, in part, to the fact that life with a toddler with special needs is an incredibly busy job.  Mostly though, it's because I haven't had the courage to sit down and just write.  I have been afraid to get too close to my real emotions and risk the downward spiral.  I hate myself for saying that, and I hate myself even more for letting it keep me from recording all of the happy & amazing that life has brought to us. 5 lines in and I'm already tearing up.  I am hoping that after I rip the bandage off this wound I will be inspired to post often.  I have cheated myself and I think I have cheated Miller by not keeping up with this blog.  And it's a shame since I always have a running blog post in my head.  Everyday.  Things I want to share with Miller about today.  Funny moments.  Lightbulb moments. How amazing he is, and how hilarious. And just how much he is loved.

::SIGH::   I forgive myself.  Moving forward...

Next week we are going to see a pediatric podiatrist in Long Island. On?? Anyway.  Dr. Jordan.  We were referred to him by another family whose little guy goes to therapy with Miller.  He has a different diagnosis, but we're hoping that doesn't really matter.  This doctor does not have a web presence, and seems a bit dry (as opposed to bubbly), but I am prepared for that I think.  We are going to see him partly because he is outside of the Dell Children's network of doctors.  That statement has it's own story, and will hopefully show up in it's own post when I am ready to write about it.  He also is supposed to have a completely different approach.  Call it a second opinion.  We're going to stay in the City, and Miller's Grammaw is coming along.  It should be an adventure!

Wednesday, November 19, 2008

All You Need Is Love


I'm watching Love, Actually on Bravo.  I love this movie and all it's lessons.  It's a feel-good movie with lots of laughs and a happy ending, the only kind of movie I can watch these days. It makes me want to hold hands.  Write a love letter.  Be brutally (or bravely) honest.  To connect rather than have connections.  Miller does this same thing for me.  His sweet spirit touches me in a way that only God can.  He makes me stronger than I ever knew I could be.  I have learned not to be such a pleaser, but instead to be an advocate.   This is HUGE, since I am known to be ruled by my emotions and a big fat sissy when it comes to conflict. Though I don't believe I'm alone.  Any momma can tell you that having someone to protect makes you instantly and infinitely...powerful.  He makes me want to be the very best version of myself.

It's been way too long since I've posted, I know.  But life is messy sometimes and we need some Tide!  Ok I don't use Tide, I use Method Baby, but whatever. This has been such an awesome year and also a tough year for us, me especially.  Danny is great about staying on an even keel.  I have been on the roller coaster so long it feels like we moved to the State Fair and I am now a Carnie.  During the rough patches it's harder to blog.  This is strange, since blogging used to bring on a sense of peace during the scary times. 


So MUCH has happened with Miller and yet so little.  As we celebrate his accomplishments, we are sometimes discouraged. Not by our own measures, but by the criteria of others.  Miller looks great. He's SO healthy and we are SO thankful for that.  He's happy, and silly.  People forget all too easily that he was a 2 pounder who suffered a major brain hemorrhage. He has been diagnosed with 'mild to moderate' CP.  We are so lucky he's alive!!  He is facing many, challenges and we don't have a clue where he's going to end up.  We're shooting for the stars, no change there.  But it stings when someone asks 'is he walking yet??'. Umm, no.  And then the 'I'm sorry' face follows. I promise to take out a full page in the Statesman when he does.  Seriously.  That question is off limits until further notice.  Don't feel bad if you've asked that question before, or any others met with awkward responses.  It's the nature of the situation.  Even family members who don't see him often will be thinking (and subsequently asking) if he's doing things that 'normal' toddlers do.  The answers are:  Yes. No. Sometimes. We're working on it.  Almost. And, hopefully one day.

Miller has been seeing a new therapist now for a few months and she's excellent.  I cannot even really begin to explain how great she is, and I think I get a little therapy out of it too.  She lets me speak candidly, and shoots straight from the hip.  I really love that she makes Miller work hard, and I know she really gets it.  By 'it' I mean this whole pediatric therapy thing, coupled with Neurodevelopmental Therapy.  And she's calling the shots.  She doesn't work for anyone, she works for the kids.  And they all love her, even when they don't. We are seeing lots of progress with MLP, just not the kind of progress you'll read about in 'What to Expect the First Year'.  In the past, I have felt like the therapists have let Miller take the lead.  I always ended up feeling like it was a waste of time in hindsight. These days, on the therapy side, I feel like I can relax a bit.  Oh and her staff.  Amazing!  We are treated like family which makes it all even better.  I am totally incapable of keeping things 'strictly business'.  Ask any business or medical professional who has come in contact with me. I have to get to know people.  I want to, and I think that's a good thing.

We recently had a run-in with a doctor in town who, by his own admission, doesn't mesh so well with Miller's therapist.  It's too much of a drama to go into, but let's just say I'm committed to this job as 1) mother and 2) number one advocate for Miller, so, I WON.  IT'S MY JOB TO WIN. It's not the first time and it won't be the last, but it does put an additional strain on things.  I am emotionally attached to my job so there are some shaky moments.  I think any parent can relate. It makes me keenly aware that I am still to find additional purpose in all of this.

Miller is just 2 days shy of 19/16 months.  I don't know all of Miller's stats at the moment, but he was 23 lbs the last time he was weighed, in the 5-10 percentile for his age.  He is getting taller every day!  He has 8 full teeth, 4 halfway in, and 2 molars poking through...which makes 14!  He is learning what 'no bite' means, and 'Owwie!' too. So far, everything still looks great with respect to his brain injury.  Nothing new or scary.  He is slowly gaining more strength in his trunk, and we are working on using his limbs in a more functional way than feels natural to him. He's getting better at weight bearing on his hands & knees which has been a big challenge lately.  With his growth it seems like his tone has increased again.  That's a normal process in development, but since he already has increased tone we don't need any more!!  He is WAY more flexible and his dexterity has improved.  He says more words now, and often at the appropriate times.  He loves to mimic us, and he babbles all of the time-which I think is just practice.  He LOVES to swing and to be flipped upside down, and his new thing is to be spun around.  Which requires ME to spin around.  Why did I ever show him the spin around game?!  Recently we spent a weekend with close friends who have 2 & 3 yr old girls, and boys that are about 10 months old.  Miller was really interested in the babies and tolerated therapy SO WELL when they were around.  We may have to borrow a baby or two in the near future.  I think those boys are magical!  He didn't seem to be bothered at all by the energy of the girls, and in fact he really seemed captivated by them (when they sat still!).  

Last week he was fitted for AFO's for use in therapy. Click Here to read about AFO's.
Once we get them and put them to use, I will post pictures and progress.  Ultimately, we hope they will aid in his ability to walk, but that's a little ways away.  For now, we will stick to the figurative rather than literal, baby steps.







Tuesday, August 19, 2008

Travelin' Man

This past weekend we took a little road trip with Miller. First, we headed to the coast and stayed at the Falcon Point Ranch. We went for a swim, had dinner, and the boys went fishing for who knows what at the end of the pier in the dark.



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.

Miller is having lots of fun in his jumperoo (and has subsequently broken up with his exersaucer) these days but he's still a bit wobbly. With decreased tone in his trunk and increased tone in his arms + legs, it's hard to be in control of everything...but we are working on it. Everything is connected. I never realized how many individual parts have to work together just to do something as simple as crawl. It's all just such a slow process, and we never really know if we're doing enough or if we're in the right place. If he had heart problems, we'd take him to the best heart surgeon in the country. He'd have a team of specialsts on his side. Why is it so tough to find the right people for this team? Why is it so hard to know if we're headed in the right direction? There's certainly no shortage of preemies, and unfortunately, we're finding that there's no shortage of brain injuries. I need a coach. A trainer. Someone to tell me where, why, how much, how often. What not to waste time and energy on. Someone to break it down, and build us up. Mr. Miyagi.
Not that we're not making progress, because we are. It's just easy to question yourself when there's no solid protocol, no rules to the game. My greatest fear is to fail him in some way. Because I didn't do enough research or therapy, or ask the right questions. This notion keeps me on my toes. That, and of course that funny little munchkin man and his endless antics.

Friday, August 1, 2008

This bag is NOT a toy



Try telling that to Miller. Same for the remote, my cell phone, the Triscuit box, and my laptop...which is now in some crazy format that I cannot undo and most websites are not even viewable to me anymore. Except for the box of crackers and the plastic bags, Miller has some pretty expensive toys. It's not like we don't give him his own toys to play with. You just can't pull a fast one on him. You don't realize how many things you use glad ziplocs for until it becomes a major ordeal when your little one hears that familiar crinkle or just happens to see you try to sneak one by. Now I understand why that obvious warning is on all plastic bags. It's tempting to just let them have the darned things.

We just had Miller's 12/15 month checkup and Dr. M likes what he sees. He noticed Miller seems more relaxed (which means less stiff and spastic but he doesn't want to say this to me) and has an improved range of motion. He also thinks he's pretty much on schedule cognitively, but of course, 'no promises'. I couldn't wait to weigh him and I was expecting that scale to say 22 or 23 lbs. Nope. He's just under 19 lbs...so he's actually lost about a pound but he grew an inch and a quarter. He's still in about the 3rd percentile for height/weight/head growth for a 15 month old-which he of course is not.

We decided to take a pass on shots this time, 'just in case', but we'll be getting them next time we go in September. Since everything with vaccines is a big ordeal these days, we took a peace of mind pass-though I don't really buy into the current theories. Just the same, no harm in spacing them out a bit.

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.

Samantha + Miller

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.


Sunday was better! We went for a drive and decided to finally eat at Trattoria Lisina out on 1826. Delish! Andy + Paula met us there for 'appetizers', which we must have ordered enough of for a 6 course meal.
DP, MLP, + me at Trattoria Lisina

Tuesday, July 8, 2008

Happy Anniversary Miller!!

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'. video

Swimmin' on the 4th of July...I am fully aware that I have Blublockers on.

video

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!

video

Miller is FINALLY playing in his exersaucer. This video was taken about a month ago...he's trying to escape

video

Saturday, June 28, 2008

New Specs


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.


He's getting better at sitting by himself, but not for too long. He panics, and those muscles kick in and he's on his back like a turtle. A sweet turtle, the drools a lot and says 'dada' constantly. Where's the love for mama?



He's changed so much lately, turning into a little man. We're working on all our new therapy techniques...traction, rolling, deep tissue. Something that resembles an Indian burn.I don't think it's very pleasant for him (I tried it on myself and it was awful), but we get through it. It's helping! So we're just going to have to get used to it. This is just the manual therapy part of it all anyway.
We're getting ready for our first big trip to Chicago in a couple of weeks. I think I may have lost my mind when I booked that flight. Should be interesting. I'll bring my video camera if I can.
We saw our primary nurse from the NICU the other day and met some new mamas/kids. They seemed very sweet and the same kind of crazy as me :). I'll have to keep you posted on the Chicago trip---should be quite entertaining.

Monday, June 23, 2008

In my professional opinion

Lately I have been channeling my grandmother, Snoopy Gramma. I've been saying things like "this place looks like a cyclone hit it". If she were here now I know she'd say, "you've got more opinions than you can shake a stick at". And she'd be right. We've been running around town to this doctor and that one, this therapist and that program. I've been Googling like a madwoman, reading blogs and message boards. All to learn as much as I can about the challenges Miller is facing, what we may all face in the future, and what we can do about it.

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

A round of runny noses and 5 teeth please

Miller + Misa are BFF's and I keep catching them trying to make out


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.
Wine Festival...


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

One year old? You don't look a day over 9 months...


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!


Monday, March 10, 2008

10 Months and counting


Apparently, babies don't know about Daylight Savings Time. Miller is a little reluctant to spring forward. However, he does sleep 10-11 hours each night so I'm not really complaining. It looks like we're going to have to ooch him forward, about 15 mins per evening until we get back to a decent bedtime.

So here's what's happening right now with MLP:

He's making progress, albeit slowly. Think of him like a road trip where you stop to see all of the roadside attractions, eat at the the best dives, take pictures in front of the 'Historic Landmarks'. He's headed in the right direction, but he's taking his time and celebrating the journey. He's such a happy little guy, which makes us happy parents. It's not always easy to play wait and see, but we are very encouraged by the past 10 months and really, we have no choice. All kids are different, develop at different paces, thrive in different ways. And there's not much info on 26 1/2 weekers with grade IV IVH's. Especially on little ones doing as well as Miller.

On Thursday we saw Dr. Mirrop. It looks like MLP is having a little growth spurt which would explain why he looks like The Hulk in some of his jammies all of a sudden. In three weeks he grew almost an inch! Dr. M says we need to pay close attention to his motor skills and a few other things, but he's still not terribly worried about MLP. He referred us to a neurologist to check in on Miller's development, etc. As always, he was really impressed with his social skills and a host of other things he does that remain unexplained for the time being. He's also really proud of Miller for wearing his glasses! I don't think he wears them enough, but that's really more because of circumstance than anything. I don't really think he minds them at all.
Lately Miller has developed a little bit of separation anxiety. By that I mean if your name isn't 'momma', then you can jump off a bridge. Although it is incredibly sweet, it's also a bit sour at times. This comes at an inconvenient time since we just started having a sitter come twice a week for a few hours. Miller's new friend Samara (sitter) is very patient with him though, and seems to be relatively unfazed.

This weekend Danny hung Miller's Little Tikes swing. It's so cute! Miller has a love/hate relationship with it right now, or rather love/frightened. Mostly he chewed on the strap.

Everyone asks about Misa + Moli and how they are with Miller. Miraculously, they leave his toys alone. And until recently they have stayed away from him altogether. Miller has begun to show interest in them and vice versa. He giggles when they come up to him and loves it when they try to sniff him or kiss him.