Wednesday, October 17, 2012

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!!

Tuesday, October 16, 2012

Its Fall!!!






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

Thursday, October 4, 2012

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!!!

Tuesday, October 2, 2012

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!!! 

Monday, October 1, 2012

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! 

Wednesday, August 29, 2012

Jeffrey's Clinic Appointment

Today we had Clinic and all went very well. Yes we already knew that the MRI looked great! We seen neurology and they will keep Jeffrey's MRI'S every three months until we hit the 3 year post treatment mark which is not until September of 2013. So one more year of the every three month MRI'S. I can deal Wit that! On another note a scary note for mama... We are weaning Jeffrey off of the Keppra (Antiseizure meds.) Dr. Packer believes that this med is causing his behavior problems that we are seeing, such as hyper activity and lethargy. I hope this is true but we have Diastat on hand if we need it! Other then that he looks great and all his blood counts were great! Next scan will be in November!

We would also like to thank Casey Cares as we leave on September 21st for an entire week to go to Disney world to see Mickey mouse Wit Give Kids The World! This is also where Jeffrey gets to spend his 4TH birthday!!!

Best wishes to all

Wednesday, August 22, 2012

MRI Results!!!

Jeffreys MRI results are in...  Drum Roll PLEASE.............................  The scan looks GREAT!!!  The words   No evidence of residual or recurrent tumor and no significant change in comparison to the previous exam of 5/7/2012. Mean the world to us!!  Nothing sounds better on MRI days!!!  

The morning was a little stressful for mommy as this is the first time i have actually had to juggle both children without a double stroller..  Thankfully god loves us and it all worked out!!  Jeffrey woke up alittle grouchy but all in all he was great!! 

Today was a beautiful day in Northern Va. with two beautiful children!!

Tuesday, August 21, 2012

Welcome!!







Better late then never...  But The Moore Family would Love to Welcome our newest member!!  Skylar Rose Moore!  Born on August 1, 2012 at 7lbs 8oz 20 Inches long @ 4:25PM.  After being induced at 820am and lots and lots of potocin Skylar finally decided that she would join us!  She had more hair then Jeffrey did!  She healthy and doing well as is Mommy, daddy and Big brother!  While we were in the hospital we did have a head ultrasound done and thankfully all looked great!  She also had her first shots of vitamin K and MMR.  We stayed at Fauquier hospital for 2 1/2 days, which was long enough in my book, the bed was not comfortable and i was ready to be home!  Skylar was not jaundice and her heart sounds great!  I have attached some pictures from the hospital!

Thursday, July 12, 2012

Let the count down begin!!

Today i went for my 36 week check up for Lil miss and all went very well.  Shes growing normal with a heart rate of 150!  She measured great as well.  I am also 3 CM dilated!  She can come at any point in time now!  We are rather excited but yet not ready for her in the sense that her room is still not complete!  On the plus side we have everything we need for her when she does arrive!!  I will continue to go to the doc every week unless contractions get very bad and or my water breaks!  Stay posted for updates!!!

Tuesday, July 3, 2012

35 Weeks down

Lil Miss Skylar is doing well still very active!! She is growing nicely although Mommy's not gaining much weight but that's OK as it will be less i have to loose later!!  Heart rate was great.  On Thurs i will get the group B test done as well.. Dr. will also check for any dilation!  Blood pressure and all looks great as well!!!  We have completed our every 2 week appointments now we are going once a week!!  This only means one thing!  YES!!!  Lil Miss will be here before long!!  We are rather excited!  Jeffrey is especially excited to see his Lil sister!  We have been super busy the past couple of weeks preparing!

We have had some events going on as well.  For one we had our Baby Shower!  It was a blast even in the heat we got a lot of wonderful things that we can not wait to use!  We also enjoyed hanging out with everyone who showed us there love!  We celebrated MOMMY'S 28th Birthday!!  We also had a cookout!  All of these things were a blast!  We enjoyed being around our loved ones swimming and chatting!  Another big event going on is that Daddy will be getting the 68 cougar painted this coming weekend!!  This has been a project we have been working on for almost 4 years now!  We cant wait to see it complete and back out on the track again!!  We also survived the big storms that came through Northern Va. on Friday June 29th.  Thankfully at 8 months pregnant we did not lose power! 


We would like to wish everyone a Happy and safe Fourth Of July!!!

Tuesday, June 19, 2012

Tweetsie Railraod








We had the wonderful joys of being able to take Jeffrey to Tweetsie Railroad recently for a day with Thomas!!  Jeffrey had a blast and truly has no fear at all of anything!!  He road every ride he was allowed to including the oh so scary chair lift!!  I have posted a few of our favorite pictures!!!

33 Weeks Down!

We have officially made it to the 33 week mark!  That leaves us about 6 weeks away from meeting Lil miss!  Monday was my appointment and everything went great.  Blood pressure was awesome, her heartbeat was super and shes even measuring right at 33 weeks!!  I am praying that she will be a 7LB Lil girl!  She has moved head down but on a good note they will not be putting me on modified bed rest like they did Jeffrey as they feel if she wants to come she will be a OK!!  I do back again in 2 weeks unless contractions get bad!  Now that time is really coming to an end I am getting a little nervous and excited at the same time!!

Saturday, June 16, 2012

Lil miss update

So as many of you may already know... Yes i have never had any luck with the one hour glucose test, so Friday i had to do the 3 hour glucose test.  After peeing 5 times in a cup and having my blood taken 5 times within 3 hours i am happy to announce that my test came back normal!!!  I had to do that same thing with Jeffrey and no its not fun at all!!!  On a plus side we are only 6-7 weeks away from meeting our little angel!!  I am very excited to meet her.  We are also having our baby shower next weekend which i am looking forward too!!  I have my 33 week appointment on Monday to hear hr little heartbeat and we are also having Dr. H. check to see if her head is down and if there is a possibility that i have started to dilate yet.  I have been having a lot of lower pain as i did with Jeffrey.  By this point with Jeffrey yes i was 2CM dilated and put on modified bed rest!  I really hope that's not the case again!!!  Me and bed rest just don't get along very well considering we are not ready for Lil miss yet either!!!

Monday, June 4, 2012

Skylar's 31 week update!

I am 31 weeks and counting down!!  I had another good appointment today!  Belly's feel better thankfully!  Also got the word today that if Skylar does not come naturally before the week of July30- August 3 i will be induced that week!  That makes us one week closer to meeting her!!  Yes i am a little nervous!!  I am also getting excited about our baby shower in a few weeks!!

Lets make things a little fun and take a poll as to what day you think Skylar should make her debut!!! 
Any dates between and including July 30- August 3!

Happy Monday all!!!

Friday, May 25, 2012

Skylar's pictures










We decided that since we did the 3D-4D ultrasound with Jeffrey that we were going to do it with Skylar as well.  Well last night was the big 3D-4D ultrasound!  I think it is totally amazing in so many ways.  I love to be able to see and hear the baby!  Here are some of her pics, but there were a little difficult to get good ones as you can tell in the pictures her leg and hand were up by her face as she was playing shy girl!!!