Happy summer to everyone!  The heat and storms in TN are pretty intense at times, but we are really loving the quiet life here.

Bennett's lungs have continued to stay healthy and we are so, so, so thankful for this.  Bennett's neurologist has increased his Topamax dosages each day in hopes of knocking out his seizures and we are slowly weaning off of Phenobarbital because that med seems to be doing very little for his seizures.

The Botox in his arms went well and really helped us to get better stretches on his arms; but he wasn't getting that much greater use out of his arms (and was actually more floppy than ever) so we are going to do more Botox injections in about 6 months.  This is in hopes to keep some "looseness" going and to hopefully stop any permanent tightening and/or "stuckness" of his muscles (also called contractures). 

Bennett is tracking really well visually and definitely knows when he is home~ his favorite place to be!  We laugh that he is a total introvert because he really prefers a quiet house vs. a loud room full of people; but there is a big world out there waiting for him, so we are slowly baby stepping our way out into it.

Bennett has been healthy and happy the past 2-3 weeks and we are so very thankful for this.  He spent a lot of the time from January through April of this year sick with respiratory issues and we were really puzzled by what was causing these virus'/pneumonias/asthma flare-ups.  After multiple trips to the pediatrician, a swallow study, and a chat with the pulmonologist, we decided to stop baby food by mouth to see if he was aspirating that.  Since we stopped the baby food he has been healthy, but flu season has also ended during that time, so regardless of what the trigger(s) was, we are sooooooo thankful. 

Bennett has been staying busy with this therapies four days a week, "stander boot camp" at home (he is working up to hour long sessions and is doing great!), and getting out and about for birthday parties, church, and family functions.  He is a sweet and happy boy and we love him with all our hearts.  His giggle is the best one in town and one day we will actually catch it on video camera and upload it to his website :)!

We will give a seizure and Botox update soon~ there have not been too many changes in these departments, but hopefully there will be some improvements soon.

Bennett had Botox injections into his arm muscles today, in hopes of loosening up those arm muscles to allow greater use of them.  Right now Bennett has little to no use of his arms due to the tightness/"tone" from his brain damage, so we are praying that the Botox is an aid to allowing him more function.  He was very brave and was awake for the whole thing, so we are thankful that it is all over; it should last 3-6 months and we will evaluate its effectiveness in 6 weeks to see if we want to schedule more injections in the future.

In other news, Bennett and his daddy enjoyed a "boys only" weekend this weekend while mommy got away for two nights and the boys had a blast together watching Civil War DVDs and making a trip to Walmart for some male bonding :).

Bennett has a week full of therapy and an upcoming trip to Memphis to see his great-grandparents, so we will post an update soon!  Thank you so much for your prayers and love.

After five + weeks of allergies and/or a virus, Bennett is finally starting to dry up from LOTS of congestion.  Due to his reflux, gag reflex and feeding tube, unfortunately congestion = lots of puking around here, so LOTS of laundry has been done the past few weeks :).

Bennett is doing great and is really settling into his 4 day a week therapy schedule quite well.  We may soon be adding an intense feeding session each week at Vanderbilt (once they get us in and off the waiting list), so that will really keep things exciting!

Bennett has been accepted to pre-school three days a week in the fall, so we are very excited about this.  His therapy center has an on-sight special needs preschool and offers all his therapies while he is there at school, so we think this will be a really good opportunity for him to start some socialization with other kids and tolerance for other adults/teachers.  It will most definitely be a time of transition and will probably take several weeks or months for him to really embrace it, but thankfully he is already loved there and has lots of people cheering him on towards success as the big boy that he is.

Bennett should be getting his BINGO chair (a sitting/feeding chair that is like a stroller/wheel chair) and his stander in the next month or two.  Once the stander is here he will be "standing" in his stander for hour sessions a few times a day to bear weight through his legs.  This is very good for his bone growth, joints, and really all the systems of his body as he grows, so we are really excited about this.....especially since he loves to stand (with support) and be on his feet.

It also looks like Bennett will be having another Botox session soon.....but this time his arms will be the recipients and not his eyes!  His arms can be really tight at times, which really fight against his urges to use them in productive ways, so we are hoping that the Botox will help relax his arm muscles more to allow use.

That's the latest and greatest around here......we have had several visitors lately and Bennett has really enjoyed the attention.  We are very blessed and extremely thankful for our little miracle boy and all those who love him.

Bennett had a lot of appointments last week and this week, but also got a cold amidst them all (or possibly allergies since everything is now budding here), so it has been a nonstop but manageable week.

We did see the neurologist last week and his #1 priority is getting rid of Bennett's seizures.  Bennett continues to be on Phenobarbital and has been gradually been building up to full doses on TopAMAX (his third seizure med we have tried).  The TopAMAX has been successful in decreasing the frequency of his seizures, but unfortunately the seizures are still happening, so we will be doing blood-work to see if there is room to go up on his doses of TopAMAX.  He has also been put on a medication to decrease his tone (i.e. the stiffness of his arms and legs) in hopes that his arms and legs can be more functional, since his arms especially have very little controlled function.  We will keep you posted on how that works out.

We saw the pulmonologist last week and he was pleased with Bennett's lung function.  The main pros we have going for us are that Bennett was a full term baby (38+ weeks when born) and not a preemie.  The doc feels that Bennett's lungs will be able to eventually heal from all the damage from his birth, so the main goal is to manage his respiratory issues as they come.  We now have a full line-up of breathing treatments and steroids for when he starts getting congested or wheezy.  Bennett's asthma (i.e. reactive airway disease) does not appear to be highly problematic right now and we are very thankful that it has been manageable thus far.  We will surely end up in the hospital at times for respiratory support, but we pray that those events are few and far between.  The doctor did emphasize that Bennett's lung health directly correlates with his life expectancy, so we know that keeping his lungs healthy is the most important thing we can do; but living in a bubble is not an option and is not what the docs want either, so we continue to work to find a good balance.

We wanted to also do a few "definitions" (for lack of a better word) for some terms that we throw around on this website, but may not be clear to those of you unfamiliar with our world.

PT: Physical therapy that focuses on gross motor functions like sitting up, rolling over, crawling, standing, walking, etc.

OT: Occupational therapy that focuses on fine motor functions like drawing, cutting, playing with blocks, blowing bubbles, etc.

Speech therapy: Works on oral motor skills like eating, talking, swallowing, etc. as well as modes of communication like sign language, vocal sounds, and adaptive equipment for kids who do not have verbal skills.

G-tube or button: Bennett's feeding tube that goes directly to his stomach and is the way that we feed all liquids and medicines to him.

TEIS or EI:  Tennessee Early Intervention Services or Early Intervention are the state programs that have been federally mandated to provide services for children ages 0-3 who show developmental delays.  Your tax dollars actually put to WONDERFUL works....imagine that :).

CP (Cerebral Palsy):  CP means "brain injury" and the spectrum for CP is quite broad. We know that Bennett experienced a depletion of oxygen following his birth and therefore resulted in his brain damage.  Bennett has a moderate to severe level of CP, so the best way to tackle that is with intensive therapy such as PT/OT/speech as early and as frequent as possible.  We have no idea what Bennett's future will hold, but we trust God's will for his life and know that we will do all we can for him to reach his full potential.

We have an official 18 month old, so we wanted to do a quick update with what is going on lately in the land of Bennett.  He is currently still figuring out his jumpy-jumper that hangs in the door frame.  He will jump a few times, hang, turn around to look in the living room, hang, jump a few more times, whine, hang, etc.  It is pretty funny, but he is slowly figuring it out; us Specks need to warm up to things before we fully embrace them :).

Bennett has been officially admitted into the Tennessee Early Intervention System (TEIS) and we are really pleased with his plan.  Through the state services (that are part of the Federally mandated Early Intervention law for special needs kids ages 0-3) he will be receiving PT twice a week, OT twice a week, and speech therapy once a week.  Needless to say his taxi driver has a full time job keeping up with these therapy appointments in addition to all his doctor appointments; but we thank God for the awesome resources that we have here.  When Bennett turns 3 he will transition out of TEIS and start pre-school at the elementary school that is literally around the corner from our house, so that is the plan for now and we are very excited. 

Bennett's spoon feeding has improved in the past two weeks and we are thankful for this.  We continue to feed him liquids through his g tube button and that has been working out just fine.  We will have appointments with his neurologist, eye doc, and pulmonologist next week, so I'm sure we will have some medical updates after those appointments.

Have a great week!

Bennett has had a great, healthy week.  He has been sleeping well, is happy when awake, and has been eating his baby food via spoon very well~ lots of praises!  We are all so thankful to be unpacked and are slowly getting into some form of routine around here.

We did have a surprising appointment today.  We went to the pediatric surgeon at Vanderbilt to have him look at Bennett's PEG feeding tube and decide when to replace it with a button g-tube.  We walked in there, he took a look at it and said "I think I can pull it out and just put a button right in"......Bennett's mommy surprisingly asked "today?!?!".......and he answered "yes, let's give it a try" as he was putting on his gloves and getting his supplies ready.  Although B's mommy almost fainted right there at the thought, she gathered herself together, sang "Jesus loves me" over and over in his ear while the surgeon and his nurse did the procedure, and comforted B during his 5 minutes of wailing afterwards.  Thankfully he pulled himself together quite quickly and hasn't seemed to notice a difference all day.  Once again, NEVER A DULL MOMENT. 

Bennett has visited some friends, went for a long walk around a local lake, and even went to church on Sunday, so it has been a good week and we thank God for that.

As with most things and in most places, Bennett does not announce his presence quietly.  He decided not to change this routine after his move to Nashville.  After a great first week, Bennett became sick again and his breathing became quite labored a week ago tonight.  Fearing low sat oxygen levels and possible pneumonia, we headed to Vanderbilt Children's ER.  After several hours, several tests, breathing treatments, and chest x-rays, the attending physician felt it was best to allow Bennett to return home.  Vanderbilt was amazing in their care for Bennett and they seem very interested in his case.  When you tell a research hospital staff that your baby is an ECMO baby, has chronic lung disease, cerebral palsy, seizure disorder, and suffers from reactive airwary disease (asthma), especially during flu and and cold season, it's amazing how quickly people start moving!  His history/story is now in Vanderbilt's system, and so we're really looking forward to NOT have to explain his history time and time again. 

His breathing and coughing remained about the same through Wednesday, and so we returned to the Vandy ER again where more tests, breathing treatments, and x-rays were performed.  His x-ray on Wednesday looked slightly better than the one on the previous Saturday, and his sat (oxygen) levels were high without the assistance of oxygen.  So the decision was made to once again allow Bennett to return home, fearing that the risks of admitting him were greater than letting him go home. 

Over the past week he has been on albuterol treatments every 4 hours, pulmicord (steroid) twice a day, and an oral steroid (prednisolone) once a day to help open and loosen his lungs, along with Motrin or Tylenol as needed to keep his fever down.  Overall he seems to be doing much better than a week ago, so we're very thankful for that.  We're praying for an early spring here in Tennessee - who's with us??!!

As always, thank you for your prayers for Bennett, and we once again ask that they continue.

Travis, Kelly, and Bennett