Bennett's lungs have continued to improve and we are very grateful for this.  Thank you for all of your prayers.  His resiliency continues to amaze us.  One minute his lungs are needing oxygen, the next minute he's giggling and laughing! 

Another thing we're very thankful for is our new address outside of Nashville, Tennessee.  We're now official residents of the Volunteer State.  Daddy has returned home, and mommy and Bennett are now living in the state they kept hearing so much about.  Maybe now Daddy will finally shut up!!  If you'd like our new address, please email us at speckhome@gmail.com. 

We've already taken Bennett to Vanderbilt Medical Center for his GI doctor and will return for other various appointments in the coming weeks and months.  Vanderbilt and Vanderbilt Children's Hospital will serve as the main focal point for his care in TN, so we are very grateful for yet another wonderful place to provide his care.  His PT/OT and speech therapy will all continue on a very similar schedule as the one he was on in Fairfax.  The GI, pediatrician, neurologist, pulomonologist (lungs), and ophthalmologist (eyes) appointments will all be through Vanderbilt. 

Thank you again for all of your prayers to the Father on Bennett's and our behalf.  We really feel and truly depend on them all.

Travis, Kelly, and Bennett

We're happy to report a wonderful praise - Bennett was able to come home tonight!  On Friday evening Bennett took a turn for the better, and he steadily improved throughout the weekend.  He was removed from oxygen on Saturday and his temperature slowly faded away.  Because of his cough he wasn't able to feed at all, so all the nutrients he received came through his IV.  On Saturday morning they placed a feeding tube through his nose directly into his small intestines, and he tolerated the feedings well.  This afternoon they began to feed him directly through his g-tube, and so far he has tolerated the feedings well also.  The doctors essentially felt that there were more cons to staying in the hospital (i.e. risk of infection, etc) than pros (especially at this time of the year), and since he was tolerating the feeds well and didn't have a temperature, the decision was made to release him. 

Anyway, we just wanted to send you this update.  Bennett is home and was very happy to receive a bathy and be placed into his own bed.  He's still got quite a nasty cough at times, but we can definitely handle that.  He'll be on a few additional meds for the week, including antibiotics to treat any potential pneumonia that is present. 

Thank you all for your continued love, support, and prayers.

Travis, Kelly, and Bennett

Bennett was admitted to Fair Oaks Hospital yesterday afternoon and spent the night there.  He woke up with a bad cough and Kelly took him to the pediatrician.  Because of his chronic lung disease, a bad cough or cold can quickly develop into something much worse - i.e. pneumonia.  Because of this threat, Bennett was admitted and he spent the night there last night. 

Overnight his condition didn't worsen much, but it also didn't improve much.  He doesn't have a temperature at present and the X-rays and RSV swabs so far have all come back negative.  However, he is a bit dehydrated and we were told that pneumonia can sometimes take longer to show itself in a patient that is dehydrated.  Fair Oaks Hospital does not have a PICU, so the doctors decided to have him transfered to Inova Fairfax Hospital this aftenoon.  Inova Fairfax does have a PICU and is the hospital where Bennett spent much of last October for his feeding problems and eventual g-tube placement.

Bennett had more X-rays and another RSV swab taken upon his arrival to Inova Fairfax, as well as more bloodwork drawn for further tests.  He's also just been placed on an IV and will be given antibiotics for the slight chance that he does have pneumonia but it just isn't showing on the X-rays yet.  At this point the doctors think it is viral and not pneumonia.  He's got quite a nasty cough that is keeping him from being able to eat or sleep at all.  However, if things do take a turn for the worse they wanted us to be in a place that could more quickly address the issues. 

We'll update you as we know more, but we ask for your prayers for Bennett and for his little lungs to once again put up the good fight. 

Travis, Kelly, and Bennett

We got some good news this 2009~ Bennett does not need another Botox injection in his eyes and his PEG G-tube (stomach feeding tube) does not need to be replaced with a button G-tube on January 8th; thus he will not be having any procedures done this week.  Bennett's eyes are not perfectly aligned, but they have improved quite well with patching, so we will continue doing that and re-evaluate in 3 months.  We are very thankful for this news!

We rang in the new year very un-eventfully......which is completely fine with us.  We have come to appreciate that boring is not necessarily a bad thing around here.  Bennett's mommy and daddy could not even remember what we were doing last year on New Year's eve because we had a screaming baby boy who spent each night wailing for 3-5 hours....thus we probably just collapsed to sleep that night long after the ball had dropped.  Bennett has come so far in one year and we praise God for that.

Bennett continues to be more and more "verbal".....we cannot understand what he is saying, but the boy definitely has LOTS to say and lots of opinions to give.  We laugh when we realize that once he does learn to talk he might never stop :).

We have high hopes for 2009 and know that God will continue to walk with us, strengthen us, love us, forgive us in our times of weakness and teach us more than we can imagine.  Life with Bennett brings plenty of challenges, but the joy brought to us by his smiles and laughs sustains us daily.

Today Bennett was fit for leg braces and he was able to come right home with a pair.  They are not hard plastic, but rather a more bendable plastic to allow him some movement; these will help keep his feet in a 90 degree angle since he likes to point and/or curl his toes a lot.  He will start wearing these braces 1 hour a day and will build up to 6 hours a day to give him some extra support when standing and even sitting in his high chair and stroller. 

We will get some pics of them soon because he seems to really like the extra support and was a total rock-star during the fitting.  In fact, today we had THREE appointments in one day, was away from home for 7 hours and did NOT have a nap, and the boy was giggling his self to sleep tonight.....I was expecting a total melt-down all afternoon long and once again, the boy way exceeded my expectations!

That's all for today..........much love from the Specks.

Bennett had his 15 month old appointment this week.  The boy weighs 25 1/2 pounds and is 31 1/2" long....it appears that the feeding tube is working :).  He is eating baby food by mouth and is warming up to his sippy cup, so we are hoping that with time his oral eating skills will be back 100%.  Right now we are just going slow because we want to keep eating a "pleasant" experience and not a negative/over-whelming experience.

We are doing well and are just gearing up for the holidays~ where has this year gone?  We have so much to be grateful for and we would like to publicly thank all the readers of this website for your prayers, encouragement and love.  We have received unbelievable support from our family and friends, and an incredible amount of support from people who were complete strangers before all this began on August 20, 2007. 

Much love from the Specks.

It has been a wild two weeks, but we wanted to do a quick update for our dear friends and family who continue to check in on Bennett's progress.

He did have a swallow study done last week and it went really well; much unlike the total flop attempt when he was in the hospital in September.  Bennett did a great job eating his baby food and sipping liquids while an x-ray machine was right in his face taking pics of the food as it went down his throat.  The speech therapist and radiologist were awesome and VERY helpful with our fiesty little man.

The results were not all that surprising~ Bennett micro-aspirates (and thus coughs a lot) when drinking very thin liquids (i.e. milk, very thin baby foods, etc) but swallows well and does not aspirate when he swallows thicker baby foods that are more like a honey consistency.  We have been giving him baby food and he has been doing well with that, so we will now be thickening ANY liquids that we give him, in hopes of eventually getting him to a point where he can manage thin liquids again without aspiration.  The doctors think that as he has gotten bigger the gap between his esophagus and windpipe has gotten larger, thus he now has to intentionally decide which way to send the food, as opposed to when he was younger and the two "pipes" were closer together so he would just drink the bottle and send the liquids straight down his esophagus.  Add to that the fact that Bennett has abnormal muscle tone as a result of his CP, so his mouth muscles are not typically developing and still figuring out what to do with the food that he puts into his mouth.  We are obviously "learning as we go" in the land of Bennett, but the G tube has been a MUCH answered prayer to the stress that eating had become.  We will get the liquids figured out eventually with the help of speech therapists, and hopefully will one day have him drinking from a sippy cup or straw.

We just got back from a wonderful trip to Memphis this past weekend for Travis' cousin Lauren's wedding.  Bennett loved getting to see all his Tennessee family and we all enjoyed the beautiful fall weather down south.  He traveled like a champ and kept his fellow airplane passengers smiling with his giggling and jumping in our laps.

This week we have another EEG (in-office for 1-2 hours) scheduled on Thursday to monitor Bennett's seizures that he continues to have during his waking hours.  Our neurologist is unsure as to exactly what kind of seizures we are dealing with.  Since the strong doses of meds that he is currently taking are not knocking out the seizures, we need to keep digging further into what is going on.  It is definitely a frustrating process because as he grows the medicine levels are constantly changing; plus it just breaks our hearts every time we watch our baby have his ~10 second tremor.  We will keep working on it, and hopefully we eventually be able to come up with a solution that completely takes the seizures away.  Please join us in that prayer.

Have a wonderful week!  Much love from the Specks.

UPDATE FRIDAY 11/14:  Bennett's EEG on Thursday confirmed that his seizures are continuing and that a new medication is needed.  He will continue on the Phenobarbital and we will start the new med tonight, so we are hopeful that this will be a better solution.  He also had an appt. with the eye doc today and it seems that his eyes are better aligned and may be in a trend of improving~ Praise God!  We will have another check-up in December and decide then whether or not to do another Botox injection.  His left eye creeps in sometimes (but not all the time), so we will continue patching his right eye 1-2 hours a day to strengthen those left eye muscles.  He is also scheduled to have his temporary PEG (G tube) switched out for a more permanent G tube button on January 8th.  If the Botox is deemed necessary by the eye doc in December, then that will occur on January 8th as well to minimize his anesthesia to one occurrence.  Thank you for your prayers!!!

Bennett has had follow up appointments with both the GI and eye docs and all is well.  The GI doc will replace his PEG tube (that currently sticks out of this stomach) with a G button (that will lie flat on his stomach) in two months.  The eye doctor would also like to do another BOTOX treatment soon, so thankfully we will be able to combine the two procedures and get them both done while he is under anesthesia (to simplify things for him and his parents!).

Other than that, we are getting back into our more functional sleeping and eating schedules and re-teaching him how to eat baby food by the spoon.  He took about a 2-3 week break from it and seems to need a refresher course, so we are going slow.  He will have a "swallow study" done on Tuesday, 11/4 which will entail him swallowing food while a radiologist takes x-rays of his throat to watch what he does with the food and liquids when they are in his mouth.  They will do all different thickened consistencies to see what he does best with, but most likely they will say "thicker is better" because he is able to control it more when it is in his mouth.  When liquid is sloshing around in his mouth it is harder to control and that usually ends up causing a choking/coughing fit.  At this point we are not giving him any liquids by mouth until the swallow study is complete, for fear of aspiration.  We will eventually hope to start introducing liquids by mouth to wean him from the G tube dependence, but that will most likely be a long and slow process.  For now we are thankful to have the G tube in place~ it has relieved a lot of stress associated with getting fluids, calories, and meds into the tiny tiger. 

Speaking of tigers, Bennett has a hilarious growl that he only does when "talking" to Travis.  Popper swears that Travis used to growl at him when he was a baby and was being fed by Grana, so it appears the apple does not fall far from the tree.  Our tiger is a delight to us and we praise God for His faithfulness.  It was one year ago today that we brought Bennett home from the hospital....the Lord has sustained us and brought us SO far.