Sorry for the lack of posts lately.....for the most part, no news is good news and we praise God for that.

Bennett has gotten his first cold this week, but thankfully it hasn't affected him too much.  He has a runny nose, cough, and some chest congestion, so we went to the dr. today just to be pro-active to ensure that his lungs sounded o.k.  Thankfully they sounded o.k. with just a bit of weasing, so we are on breathing treatments throughout the day to keep those little lung tissues nice and open for air-flow. 

Other than that, Bennett is doing great!  He is sitting up (assisted) more and more and ALMOST rolling around.  He is already 20 pounds, so he prefers to lay there fat and happy instead of exerting the effort to roll over; but he does respond quite well to clapping and cheering his name and will give us big toothy grins and giggles more and more.  He especially loves it when daddy appears after work- his face lights up in a major way and his little legs start a kick'in.  We are going to start taking more videos (and hope to post them) because some of the vintage Bennett antics are hilarious.

God is a God of miracles, and we witness that on a daily basis.  We give Him all the glory for the life of Bennett and just can't stop thanking Him for his love and mercy.

We have already had two PT sessions, 3 vials of blood drawn and an eye dr. appointment this week and it's only Wednesday....what wildness.  Bennett has been going with the flow like a real trooper, which makes it all a lot more manageable.

PT is going well and we continue to work on rolling around and sitting up; we are getting closer day by day.  The blood was drawn to check his seizure medication levels in his blood.  Since the seizure episodes continue, we are going up on his dosage.  This was his first "needle" experience since the NICU and Bennett did not even cry when the blood was drawn because he was distracted by his green frog and nonstop singing of "Twinkle twinkle little star."  He only cried when they were putting on the band-aid, so the two technicians and his mommy were THRILLED that he did so well (yes, we were expecting much worse from the wild man).

Bennett's left eye continues to creep in towards his nose, so we will most likely be doing a Botox treatment in June.  The FDA originally approved Botox for this procedure (and not wrinkles!), so we are told there are very few risks associated with the 30 second procedure.  Yes, it gives us all the creeps for him to be getting a shot in his inner eye muscle, but he will be shortly sedated and it will help to strengthen those outer eye muscles to bring alignment to his eyes.  We will continue to patch his right eye daily to work on using his left eye's vision.  We have learned that when a baby's eyes are out of alignment the brain automatically does not use the eye not in alignment, thus his right eye has been getting a lot of use and the left eye has not been getting as much use.  If we were to do nothing, his left eye would eventually go blind, and our dr. assures us "that will not be happening on my watch."  He is a great pediatric opthomologist - he did a fellowship at Harvard and is well respected in this area, so we completely trust him. 

So that's a brief update in the land of Bennett.....he is a joy and is figuring life out more and more.  For example: he now associates drinking his bottle in his glider with going to bed, so we now have melt-downs any time we sit in the glider and are thus finding other places to drink our bottles all through the day.... he cracks us up.  God is good!

Love,
Kelly, Travis & Bennett

Last night was a treat for our family.  The three of us went out to eat (Mexican, of course!) and Bennett was an angel.  He sat in his seat looking around the restaurant for the first half of the meal, and then enjoyed his squash and bananas (although he kept begging for chips and queso but we told him he had a wait a few more months).  When he was done eating he just sat in daddy's lap as content as could be......what a gift!  We were quite hesitant before going out because we weren't sure how he would handle a new/loud environment, but he did fantastic and way exceeded our expectations- what a rockstar he is! 

We have had a pretty quiet week around here.  Bennett has a new foam triangle chair to help support him in his sitting up, so we are hoping that is a helpful tool- we will post some pics of that soon.  He is getting stronger each day and seems to be heading in the right direction for sitting up and rolling around- his physical therapists are both very pleased with his progress.

Thank you for all your prayers and continued love- God is providing all that we need each day.

Love,

Kelly, Travis & Bennett

Bennett had his Grana and Popper visiting him all weekend, so he was loving every minute of his Tennessee lov'in.  They had not seen him since Christmas, so they enjoyed seeing the positive strides he has taken (a.k.a. not watching him scream/cry the majority of his waking hours, like he did nonstop a few short months ago).

Bennett continues to have some seizure episodes, although they have decreased while on the medication, so we are documenting these and will do some blood-work in 2 weeks to evaluate its effectiveness and whether or not to pursue other seizure medication options.

Bennett's eye patch sessions are going fine- it seems to wear him out a bit by using only the left eye muscles.....but since that is the whole point of the exercise, we are pleased that he is tolerating it well.  We will go back to the eye doctor in a few weeks to see if the patch sessions are working.  If they are not, we may then pursue Botox injections into his left inner-eye muscle to relax/paralyze that muscle and therefore allow the left outer-eye muscle to get more activity.  Bennett's mommy may ask for a few Botox injections as well since motherhood has definitely added a few bags and wrinkles to her face.....

Bennett is really into his animal books and all the associated animal noises that his books solicit.  In fact, his mommy and daddy feel that they spend most of their days and nights making every animal sound known to man to keep our boy entertained......he LOVES sound effects and seems to have a "sound of the week" that especially breaks him into giggles.  This week's sound is daddy's cough- go figure.  Two months ago if daddy coughed, it startled him and sent his nervous system into a 30 minute meltdown...... and now he is laughing every time- unbelievable. 

Bennett is a miraculous joy and is gradually making progress in his PT and OT sessions.  Thank you for your prayers, love, encouragement and support of the tiny tiger!

Love,

Kelly, Travis & Bennett

Bennett has been on his new medication for a few days and so far, so good.  He is taking Phenobarbital for his seizures.  We are told that this has been around since 1912 with literally millions of kids having been on it, so we are thankful it has such a strong track record.  Bennett does seem to be sleeping better at night, but is not sedated during the day, so we are extremely thankful that his body seems to be adapting well thus far.

We went to the eye doctor this week to follow up on Bennett's occasional cross-eyedness.  We (along with our therapists) have noticed that B's left eye tends to pull inward, and the doctor confirmed that his left inner-eye muscle appears to be stronger than the outer-eye muscle, which is quite common for kids with CP.  It is not severe, but something that the doc wants to work on sooner rather than later, so B now has a little patch to wear on his right eye for a few hours each day to strengthen his left eye muscles.....he has gone from Kramer baby to Aladin baby to Pirate baby, all in a few short weeks!  He's just an adorable little work in progress :). 

Bennett is making progress in his sitting up skills.......we aren't there yet, but he is tolerating that position more and more.  He loves to be standing, jumping, and running in our lap, so it's so fun to watch those little legs go, go, go.  He is also babbling and "talking" more and more, which of course are welcome sounds to our ears.  We have a lot of challenges ahead in terms of his motor development, so we boldly ask for prayers that Bennett will be able to eventually reach these milestones in his development:

~ Reaching and grabbing for toys, bringing them to his mouth, etc.....B's fists are usually clenched when he is focused on something (or mad!), so we need those little hands to open up and start exploring all the fun things that can go in his mouth (and thus stimulate him orally for eventual speech).

~ Rolling over!  B does not enjoy being laid down on the floor and thus does not like to practice rolling over....he is ok with tummy time and will roll from stomach to back, but wants nothing to do with rolling from his back to his tummy.

~ Sitting up, crawling, standing up & walking

Have a wonderful weekend and thank you for your prayers, encouragement and love!  We will be sure to get some pirate pics this weekend....

Love,

Kelly, Travis & Bennett

Bennett's results are in.  After reviewing his EEG results and watching hours of film (from his "Aladdin" experience 2 weeks ago), the neurologist believes he is having seizures at least part of the time.  At times, only Bennett's eyes and face will twitch - the doctor doesn't seem overly concerned about these episodes.  At other times, Bennett's whole body will twitch, with his arms moving fairly rapidly back and form.  The doctor is fairly sure that these are seizures, so as of today our boy is returning to the "medicated" world. 

In the world of seizure medication and treatment (of which we're only beginning to educate ourselves about), there appear to be several treatment options.  The doctor is placing Bennett on an evidently tried-and-true medication at low doses at first, and after a few weeks he'll re-evaluate how Bennett is doing and adjust the medication/doses as needed.  The medication will be administered once a day, at night.  One of the possible side effects of the medication is drowsiness.  The possible results of the previous two sentences combined excite Bennett's parents more than words can express.

Again, thank you all for your love and prayers for Bennett and for us.  We really think he's doing well overall, and his little personality seems to be coming out more and more.  We continue to ask for and depend on your prayers.

With Love,

Travis, Kelly, and Bennett  

We will meet with our neurologist on Monday morning, but he did call today and let us know that he has been reviewing the EEG results and it appears that some of the shakes/twitches are seizures and some are not, so he is going to keep studying it.  We hope to get further clarification on Monday and come up with a plan for going forward.  Thank you for all the prayers on our behalf- we are extremely grateful and are greatly comforted by the army of prayer warriors walking with us in this journey.

Bennett has had a few firsts lately~ he recently had his first non-family member babysit him (thank you nurse Ashley!) and seemed to do just fine.  He has visited a few little friends lately, he survived a quick shopping trip with Grammie and mommy to find mommy a Easter dress, he has been to church twice, he went and visited mommy's work to meet all his Winston friends, he tackled Babies R Us to get some of his necessities, he had his first trip to the post office, and even wore shorts today for the first time.....it was a gorgeous, warm spring day today and we are all SO thankful that spring is finally here.  There is definitely a world out there ready and waiting for our Bennett to explore it.

We will post after our neurologist appointment on Monday~ have a wonderful weekend!

Love,
Kelly, Travis & Bennett

Bennett has done great today during the EEG - thank you for all the prayers and encouragement....we feel so covered in prayer and strengthened every minute by God's mercy. 

Of course Mr. B did scream the entire time they were putting the probes on him this morning, but once the gauze and cap was on his head he seemed to forget all about it.  He does make the most hilarious faces when he looks at himself in the mirror.....earlier in the day it was as if he was thinking "something looks a bit out of place"; and then tonight as he was screaming while being rocked to sleep (a normal occurrence around here...), he would look in the mirror next to the rocker (that he normally fondly admires himself in with coos and giggles) and started screaming louder, as if to say "who is that scary mummy looking back at me?!?"

We won't have any results back from the EEG for several days, but we will do a post as soon as we know any thing substantive.  We know that God is in control and He continues to amaze us with the healing powers cast over Bennett.

Love,
Kelly, Travis & Bennett