We are less than a week away from Bennett's eye procedure where Botox will be inserted into his left inner eye muscle.  He will be put under general anesthesia for a few minutes so that he is completely still during the procedure.  He had a pre-op appointment yesterday with our pediatrician and she said he was "cleared for surgery", so all systems are GO.

The eye doctor has told us that this is really a procedure to buy time before having eye surgery to correct his left eye's tendency to creep inwards.  He said that no doctor here, at Johns Hopkins, or Harvard would want to do eye surgery on someone as young as Bennett, so the Botox will keep those left eye outer eye muscles working hard, in hopes of keeping them strong.  He has had ONE case where the Botox treatment solved the baby's cross-eyed problem, so we are praying that Bennett is his SECOND case.  Please join us in that prayer so that we can avoid an eventual eye surgery.

We are still patching his right eye daily to give his left eye a chance to get more use, and that will most likely continue indefinitely.  He does not like the patch, so we have NO idea how he is going to respond to life post-Botox.  Please pray that he is free from discomfort and agitation!

We will post more on surgery day, but until then thank you for your prayers and love for our boy!!!  He is giggling away as I write this, so I better go grab him and get him some lunch :).

Today Bennett had his first trip to the local farm and he seemed to enjoy the new sights, sounds, and smells :).  We plan to make many more trips there this summer because there is a local farm market there (with fresh produce and fruit) once a week and we think daddy will really really enjoy going with us too on his days off.

Thank you for all the prayers and encouragement about Bennett's eating.  He has made some improvements over the past week and continue to feel God's presence in both the highs and lows.  We were given the "go" by our pediatrician to try baby yogurt, but he seemed to have an allergic reaction (red bumps on his face and wheezing) to his first taste this week, so we will be staying away from dairy for a while.  Bummer!

Other than that, summer life is good in the world of Bennett.  We have yet to have our first pool experience, but we plan to do that this weekend.  Bennett has been practicing sitting up in the bathtub (and not just lounging back in his bath throne!), so we hope it will be good practice for his upcoming fun dips in the baby pool.

Bennett is loving his exersaucer and wants to be jumping and/or running and standing in your lap at all times.  Sitting is just too boring for him these days, but since we have not fully mastered the art of independent sitting, we continue to work on it when he feels like cooperating......Mr. Personality definitely lets us know what he likes and dislikes!

It took about 10 days to get over his cold, but thankfully it looks like the worst is behind us.  He did end up running a low fever for most of the time while his body was fighting the virus.  We went to the dr. three times over those 10 days and thankfully she was pleased with his progress on Monday of this week.  She was so pleased that he was able to get his 9 month shots.....not fun for the sweet boy!  He has been cranky ever since, so we are dealing :).

Unfortunately as a result of his cold, teething, and growing awareness, Bennett wants little to do with his bottle right now.  This is somewhat making his mommy crazy, but we are doing our best to keep feeding him as much as he will take by spoon (baby chicken, guacamole, sweet potatoes, you name it!) and are also giving him Pedialyte via medicine dropper to keep him fully hydrated.  He is still at the point where he gets the majority of his calories from his bottle (even though he is doing three meals a day of baby food), so that is why we need him to drink that bottle!  Right now the only time he will drink is when he is too tired to fight me and just gives in.....once again, we are in survival mode and just doing whatever works.

We do request prayers for Bennett's eating right now.  It seems like we had made several steps forward, but are now dealing with several steps back.  We were quite used to set-backs in the NICU, but it is definitely hard when the set-back comes so unexpectedly.

We are still planning for his Botox injection in his inner eye muscle on July 1st.  Until then we will just be continuing on with our PT and OT.  His seizures are still occurring, although maybe slightly less frequent, so we will meet with our neurologist on Monday to talk "big picture" and see if we want to try a new med.

Never a dull moment around here.  We definitely want to be thankful in all things and give God all glory for where Bennett is today.  Some days are harder than others, but there is no question that our hearts are full of thanksgiving and boundless love for the tiny tiger.

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