Up until October 2009, ear infections had not been much of an issue for us...well go ahead and add it to our list.  Bennett has been battling a mean ear infection in his left ear for the past five weeks (before, during, and after his H1N1 bout) and no anti-biotics were able to knock it out.

After he had a really rough day at school on Friday we headed back to the pediatrician (we had been on a super strong anti-biotic since Monday), and when our doc looked in that left ear he said that it still looked bad....time for the next option. 

Bless Bennett's heart, but he had to get anti-biotic shot injections (2) into his legs Friday, Saturday and Sunday to aggressively attack that infection.  He definitely did not enjoy his injections all weekend (and we missed an early family Thanksgiving in Memphis), but at this point he is starting to act more like his semi-happy-feisty self so we are hoping the worst is behind us.

The plan is to hopefully get him scheduled for tubes ASAP once we can get him well, so we will keep you posted on that "surgery".  He had his g-tube surgery just over a year ago, so I guess B likes to keep our lives exciting with at least one annual surgery :).

Please pray for our sweet boy.  As all parents out there know, it is so difficult to watch your child suffer and Bennett has had his fair share of suffering these past five weeks.  Since his development is not typical, an ear infection that causes extra drainage means pretty constant coughing, choking, and gagging....and thanks to his severe reflux, that usually leads to vomiting and the risk of an aspiration (which could cause a pneumonia)....day and night.  Throw in a fever off and on that increases his amount of seizures and you've got some wild days and nights of minimal sleep around here.

We will keep you posted on the date set for tubes, once we know it.  Thank you for your prayers!!!

Other than a lagging ear infection, Bennett has been doing great post-H1N1.  We are so thankful for this blessing and know that he is fortunate to have handled it so well.

Since the end of the year is coming up and some may be looking to make charitable contributions for this tax year, we wanted to notify you of a VERY worthy not-for-profit.  High Hopes is where Bennett goes to school and receives his therapies~ we could not imagine a more nurturing environment for him.  The therapists, teachers, and staff are extremely experienced, loving, encouraging, and have helped to provide only the best resources for our Bennett.

If you are looking to support a cause that literally changes the lives of children and their families, please consider contributing to them~ like so many not-for-profits, they depend on private funds and grants to keep their doors open.

High Hopes, Inc. 1674 Mallory Lane, Suite 103, Brentwood, TN 37027

Also, if you live in the Nashville area and are looking for a great photographer who comes to your home and is fabulous to work with, we highly recommend Kat Jones~ katjonestn@gmail.com

Santa and his elves are bringing Bennett a special gift this year (and it will probably be ready in the next few weeks), so stay tuned for pics of our boy enjoying his big gift this year!

Yes, our sweet Bennett is battling H1N1 this week....but we are thanking God that so far it has been manageable and he is doing really quite well.

B woke up from his nap at school on Wednesday pretty lethargic with a cough, so as that continued Wednesday night and Thursday morning (along with a low-grade fever), we headed to the pediatrician to see what was going on. 

The doc said that his ear infection from the previous week was still there (after 10 days of anti-biotics), but after a FLU test we knew what the REAL culprit was.  Bennett tested positive for Strain A of the flu, which has a 99% chance of being H1N1.  He tested negative to Strain B of the flu (which is the common, annual flu), so since H1N1 is really going around here, we deducted that is most likely what we are dealing with.

Bennett's fever really spiked Thursday afternoon (right after getting home from the doc), but once we got the Tamiflu, anti-biotic, lung steroid, and motrin in him, he has been doing remarkably well ever since.  God is good!  We know that B's lungs and breathing are what we need to be most watchful for, but so far the meds and breathing treatments are doing what they are supposed to.

We all know that Bennett is a fighter and has an unbelievable stamina, so we are hunkering down to fight this mean virus.... and will later just add it as another notch in the Bennett belt of triumphs.  He is our hero!

We are thrilled to announce that Travis is now home in Tennessee for good!  He has been commuting via plane each week to DC for the past eight+ months, but that has now come to an end.  He was normally here in TN 3-4 nights a week and up in DC 3-4 nights a week.  We got into a rhythm and the months flew by, but we are thanking God for providing a job for him here with us.

It was a sad good-bye for Travis as he said farewell to co-workers who have supported him incredibly since the day that Bennett was born.  They all will be really missed and showered him with encouragement as he departed.  For obvious security reasons we never announced on the internet that this was going on, but needless to say, we are so, so happy that the east-commuting has come to an end.

Bennett is currently battling a virus that has gone thru his classroom at school and Travis is trying to shake a lingering case of food poisoning, but other than that we are GOOD.

Bennett did awesome on his recent trip to DC~ he slept on the plane ride there and back, so we consider that success :).  He adapted really well to a whole new change of scenery and enjoyed jumping around to see family and friends.

The weeks are flying by as Bennett is busy with school, therapies, and now even a Vanderbilt pediatric speech study that he is part of, so there is definitely never a dull moment! 

Bennett is such a happy, chatty baby boy~ he is still loving his books, his favorite toy "boombox", and is super happy strolling around in his new stroller/wheel chair.  He sits in this while at school and seems to really enjoy the core support while watching and engaging with all the kiddies around him.

Life is good and we are so happy that fall and football is finally here :).

8 - 9 am - Bennett "soaks" in his crib and watches his mobile (he sleeps on his tummy, so we flip him over onto his back and he is happy as can be to see his mobile....this usually involves lots of squealing and kicking! but sometimes he gets so excited that his reflux is triggered and he pukes again- not fun!).  If it is a school day, we are heading out to school where he sees his friends and receives his PT and OT twice a week.

9 - 9:30 am -Bennett sits in his high chair, is hooked up to his g-tube pump to get the last of whatever milk did not go in his tummy overnight, and pushes the big yellow button to make his sheep go BAAAA or his cow go MOOOOOOO. He has very limited use of his arms and we are constantly working to get him to practice controlled use of his arms, especially "righty," since his right side is stronger than his left side.  When we pull out the boombox in the morning, he sometimes gets so excited with squealing and kicking that it causes a seizure. We are still working with his neurologist to GET RID OF THOSE MEAN SEIZURES.

9:30 - 9:45 am - We get dressed, wash his face, comb his hair, and he's ready for the day!

10 - 11 am - We are usually heading to Speech Therapy, Saturday errands, or church on Sundays.

12 - 1 pm - We come home and play on the floor, read books, and/or he hangs out in his crib watching his mobile (that is seriously his favorite place on earth) before getting ready for a nap.

Bennett turned 2 this morning at 9:23am.  Happy birthday, son!!  We love you so very, very much.

Love,

Mommy and Daddy

No news is good news, right?  ......but we are definitely sorry for our delay in an update.  Bennett has had a great summer so far and has been healthy, other than a little cold that thankfully did NOT escalate into an asthma flare up.

We just got back from our first trip to the Shriners Hospital in Lexington, KY and we had a great experience there.  Their website is:  http://www.shrinershq.org/Hospitals/Lexington/  Bennett was evaluated by a Physiatrist (a doctor of physical medicine and/or rehabilitation) and she was VERY experienced with kiddos with B's issues.  They perform numerous orthopedic services and/or surgeries, so we were fortunate to get evaluated and invited into to their system. 

The first thing she said when she walked in was, "Wow, Bennett looks a lot better in person than he does on paper!"  How true is that?  When most docs hear the child has quadriplegic CP after 16 days on ECMO, seizure disorder, and a G tube, they probably are bracing themselves for a bleak picture when they walk into the room.  Well when they walked into our room, Bennett was "talking" while being read to, kicking away, and even let out a few belly laughs.

The doc there said that we should keep doing what we are doing with PT, OT and speech on a weekly basis, plus she was pleased with our equipment so far (his new BINGO chair, his stander, and his soon-to-be gait trainer at home).  She was great and will see us again in 6 months for a follow up.  Until then, our main goal is to keep working on sitting up independently (his core strength is so, so, so crucial) and continue stretching his arms and legs to make sure that he does not get "stuck" in any positions.  At this point she does not think additional Botox in his arms is necessary.

We are heading to the beach for a family vacay very soon, so pics will soon follow and it will be our sweet boy's 2nd birthday before we know it!  Time is flying and Bennett is growing like a weed~ it is definitely looking like he has his daddy's tall genes :).

Thank you for your continued prayers and love for our Bennett Mitchell Speck!