This is OUR life.....


Ohh man you caught me....I was just waking up...big stretches!




I think daddy's trying to steal my Binky...
doesn't he know that's just wrong!



Hey there.....all you people...
You got something to say??
You know everyone has something to say!
I got something to say....
Thank you...and God loves you ...ohh and me too!



The Austin Crew..>Andrew , Tyler, Devynn and Avery !


Smiles.....Brighten a day and lighten a dark room!



If I could just get this thing in my mouth...that would be great!!!





My daily Chest PT.....for someone who hates their stomach... He sure looks comfortable...if his home PT sees this ...he's in big trouble!!!
HA HA HA....


Andrew's littlest brother......and answer to his prayer!

Information and what's happenings!



YES---it's say's I'm the BOSS...
Well...I may be the BOSS...but I'm not in control....
(cause I wouldn't choose to have theses seizures)

Feeds are @ 35 and have been for a good period of time....The concentration of the feeds had gone up to 22 cals and remain there...His PH which shows the acid in his stomach is still low....and he is pretty maxed on his reflux meds....So we will just have to bare with it, as the other reflux meds would not go well with his seizure meds.


Speaking of seizures......we had another EEG last weekend(Friday to Saturday) that confirmed that Avery is in fact still having many many seizures; the epilepsy specialist actually said I was right on the money with his seizures(just as accurate as the EEG)....he also said this was one of the more serious cases of Infantile Spasms(IS) he has seen......


These are my brain waves....while having some seizure activity!

Over the past couple of weeks Avery's epilepsy doctor spoke to Joe and I about Avery's seizures and we brought up a medication we are familiar with and possibility in trying it with Avery (we are familiar because ...Andrew has used it to control his seizures for many years)...however after the most recent EEG.....the doctor on service(not our regular epilepsy doctor, but one we like) at this time he was pretty dead set against the above medication....


This is my head all wrapped up with leads under the wrap .... these leads are hooked up to the EEG, which is then hooked to a machine/computer monitor....so they can monitor my seizure activity for about 24 hours!


As it is not really known to be an affective treatment for IS ...and it is not a drug of choice for kids under 2-3years of age...as it is really hard on the stomach(more motility issues...NO THANK YOU) and other side effects are liver damage ...needless to say .....this might be a medication we will need to consider in the future but not one that is going to be considered at this time....


I must have been having a good dream....

Since being diagnosed with IS ,these past few months (since Avery's IS diagnosis)I have done quite a bit of research on IS and the options for treatment ....After prayerfully considering it , Joe and I have finally decided to to try a medication called Vigabtrin it is not an FDA approved medication because of the risk of it causing damage to the retina.Which could mean for Avery that whatever vision he has could be lost...however looking at the other side of it ...if we choose to not do this treatment; regression could continue.The regression that has already taken place is his decrease to no... PO(by mouth) feeds..... this is likely caused by his increased seizure activity along with the damage that has already happened to the brain....Due to Avery's regression ....West Syndrome is now a new diagnosis for him!

You can read below some general information about est Syndrome....

West syndrome is an uncommon to rare and serious form of infantile spasms (epilepsy in infants). The name "infantile spasms" is used to describe both the seizure type and the syndrome, although not all infants with infantile spasms have West syndrome.

The syndrome is age-related, generally occurring between the third and the twelfth month, generally manifesting around the fifth month.

Compared with other forms of epilepsy, West syndrome is difficult to treat. To raise the chance of successful treatment and keep down the risk of longer-lasting effects, it is very important that the condition is diagnosed as early as possible and that treatment begins straight away. However, there is no guarantee that therapy will work even in this case.

Insufficient research has yet been carried out into whether the form of treatment has an effect upon the long-term prognosis. Based on what is known today, the prognosis depends mainly on the cause of the attacks and the length of time that hyhpsarrhythmia lasts. In general it can be said that the prognosis is worse when the patient does not react as well to therapy and the epileptic over-activity in the brain continues. Treatment differs in each individual case and depends on the cause of the West syndrome (etiological classification) and the state of brain development at the time of the damage.

"Trust in The Lord with ALL your heart and lean not on your ouwn understanding"

Please pray for our family as we wait on God and his leading and as we address all our families needs and challenges daily ....

Vigrartin is not FDA approved , it is also not covered by insurance, therefore we have to somehow find a way to pay for it.... We know God will continue lead us on this if it is HIS WILL for this little boy!


On another note......We saw Avery's hematologist on Monday and she will see us in outpatient clinic, as there is nothing she wanted to test as of right now....it was nice to see her and catch up... and I feel better having talked to her about a few concerns!



Awww...still a good dream!

Avery's acid blocker medications are still not really blocking the acid really well and his reflux continues,as I mentioned above. They are still talking about doing a Nissen fundo(see prior updates for more info on this surgery) in a few months...that is of course if Joe and I believe that is in Avery's best interest....and what God would be leading us to do!



Avery's vitals remain about the same as they have been ..not to much has changed!
Autonomic is probably the issue , but not to much to do about that at this time.
The pain doctor came in and she was great...although she thinks he has nerve pain we are not starting the medication recommended at this time , as doing to many things at once is to much...We will see her outpatient ....at some point!
His rash on his leg stared looking good for a couple days now it looks not so good again...his tube area has a rash on it.....I'll mention it again at rounds tomorrow!






My mom tried to capture my boo lip in a picture...but I was to fast for her!!



Avery's fan club!

Grandma loves...and adores her four grand kids.....