Seizure update!

I am super glad to say that Jeffrey has had a great day today! We have had a busy day but hes been in a great mood and in great spirits.
We went to Fairfax to see the neurologist Dr. Packer and thankfully he did put him back on seizure medication!!! Made me feel like a million dollars!! He is however not on the Keppra as we both feel that the Keppra made him extremely hyper! He is now on a low does of Trileptal to start and over a 2 week period we will have him on a more steady does and then we will see if that works for him. We did have blood work done again today just to be sure that everything as far as his counts and all with his infection in his lung, pneumonia, is good and it is!! He Looked great to the doctors yes we ended up seeing all of his clinic doctors even the physical therapist Mr. Mike... Jeffrey's favorite as all they do is play silly!!! They are not sure what may have caused the seizure other then just not being on meds which now gives him the title of Seizure disorder! Good thing to this is that now we know that he needs his meds! We will continue to keep that November 12th scan date and just watch him between now and then. He is going to continue taking the zithromax for 3 more days. We follow up with his pediatrician on October 23 and then neuro-oncology clinic will be on November 21. They will also take a blood draw at that clinic appointment to see what his seizure medication level is at!!
I was informed that as his new med does is not yet in his blood stream that there is a chance in the next month that our poor Lil man could have another seizure. Yes i am alittle freaked out as no matter how many he has they are just as scary!! The worst part about the whole thing is that there is nothing that we can do other then give him his diastat.
Dr. Packer also noticed more of a vision field cut today which could be one of two things... Jeffrey was either being more cooperative today and actually listening and not goofing off or the seizure had a roll in it. Since it did just happen yesterday he may be still tired from the amount of meds he was given to help him come out of it!
Please pray for no more seizures!!!

Bon Fire 2012!!

We had our first Bon Fire the Second weekend in October!!  It was a blast.  We had some friends over and the Kids roasted marshmallow's!!  Here are a few pictures of our fun!!

Skylar at 10 Weeks!

Yes our precious angel is growing like a weed.  Although we should have known from my pregnancy she is by far a very difficult child as well.  From colic to formula changes.  We have been in close contact with the doctors since august for both of our children and i am not sure who is getting tired of hearing from each other me or the doctor's! 

Skylar they now believe is not only colic, which we hope resolves here very soon, but is having a milk intolerance.  We have now taken her off milk completely and put her on soy.  We also have to give her suppository's often.  No not any fun at all.  I have attached a few pictures of our angel at her best!!

Seizure #3

This morning started out very chaotic!  Jeffrey woke up at about 6am in a deep stare.  He was sort of talking but within 15 mins went into a seizure.  Gave him his diastat and called 911.  No matter how many times i go through this its still very scary!  I cry and get all worked up.  He did come out of the seizure and fall asleep, which is very normal due to the meds, all before the ambulance arrived at the house.   He was congested in the ambulance so they gave him a nebulizer treatment.  We were in fauquier hospital ER for 4 hours awaiting Blood work and chest x-ray.  Come to find out Jeffrey has the onset of pneumonia in his lower left lobe of his lung.  Now he is on zithromax for that.  We go on wends Oct 17th to the neurologist in Fairfax to talk about the seizure and if he will be put back on any seizure meds.  Please pray for our poor little man in hopes that this was just another fluke!!  I am attaching some pics of our little hero during his stay this morning!!

Its Fall!!!

PUMPKINS!!!  I love this time of year as does Jeffrey!!   Here are a few shots of the Pumpkins Jeffrey and Papa painted!

A simple Favor PLEASE!

Our family would like everyone to keep us in there prayers!  Jeffrey is now medication free for the first time in 4 years.  This is very scary for us!  We all pray that he continues to stay seizure free so we will not have to have a scary hospital visit and put him back on meds yet again.  If this were to happen he will NOT go back on keppra as the neurologist thinks that the keppra was causing Jeffrey's hyperactivity!  We have yet to see a decrease in that but his moods have been better!  That's a huge step for our hero!  Again just please pray that we can continue on our path to success for our miracle boy!  Thanks everyone for everything!!!

Skylar is 2 MONTHS!!

little baby girl is officially 2 months old and yes she fell asleep right as i started to take pics!!  Silly girl!!!

Doctors appointments

Jeffrey and Skylar both had there Doctors appointments on Oct.1.  Thankfully both children are doing awesome!!  Jeffrey is growing well although he is a Little short for his age but not my much.  He has been growing over the past year though!!  He is above weight for his age!  What can i say boy likes to eat :)!!!  He is also very smart for his age!!  He is 43.5 lbs 39.5 inches tall!! Jeffrey also got his Flu shot which he was very up happy about but got over very fast when McDonald's was an option!!!

Skylar is below average in everything!  She is weighing in at 11lbs 7oz and 20 inches long.  She is short and thin for her age but again in growing well!!  Her little head is also a little below average but nothing to worry about!  She is colic but hopefully by the age of 3 months she will start to out grown that!  She refuses to self sooth herself.  No Binky and loves/ has to be moving most of the day.  She loves to rock!!  She did very well with getting three shots in her legs and one oral immunization!  She currently does sleep through the night!  She eats about every 3-4 hours about 4oz of formula.  We have started to put rice cereal in her night time bottle as well!  She really enjoys that!!! 

Disney 2012

We cannot thank Casey Cares, Something MAAgic and Give kids the World enough for a wonderful vacation to Disney World!  Jeffrey had an absolute blast!!  This is a trip that our family will NEVER forget!  This was a trip that was given to our family to take a week away from all medical appointments and stress!  Jeffrey is truly an amazing child in more ways then one and is very grateful to have the opportunity to be a part of wonderful support groups!  During our stay in Disney we had the pleasure of staying at Give Kids the World village and visiting many Disney parks such as, Magic Kingdom, Animal Kingdom, Universal Studios and Island of Adventure.  Jeffrey got to meet many characters as well.  We flew from Northern VA. to Fla via American Airlines and Something Maagic.  It was an amazing flight!  Reagan Nation airport in DC and Dallas Fort Worth airport did a wonderful job of making Jeffrey's flights magical!    We were on our local news station.  I am attaching the link for all to view!! I can not even begin to tell everyone what all we did.  It was amazing all the fun we had!!  I have attached a few pics of the activities that we did!! 

http://www.wjla.com/articles/2012/09/jeffrey-moore-3-heads-to-disney-to-celebrate-good-health-80142.html

Jeffrey turns 4!!!

Jeffrey turned 4 on September 23, 2012!!!!  I can not believe how time has flown by and our big boy is 4 already!  We had a party at home with all his friends that come to his house for daycare!  He had a blast!!  He is truly one amazing little boy!  I have attached some pictures of his home birthday party!  We have decided not to have a big birthday part him this year as we celebrated his 4th birthday in Fla. with mickey and Minnie mouse thanks to Casey Cares, Something Maagic and Give Kids the World!!  We are planning on doing a family gathering for him in October!