Skylars milestones

Skylar has amazed us in many ways!   She said dad for the first time on valentines day!  It really ade Daddy feel extra special!  She also crawled for the first time on March 20th!!  What a big girl at 7 1/2 months!  She is also pulling herself up holding onto things.  she stood alone not holding onto anything for 3 seconds on march 18th 2013!! 

Jeffreys story

Jeffrey Moore was diagnosed in April of 2010 (at 19 months old) with a cancerous Brain Tumor that consisted of the entire right side of his head.  After many trips to the doctor's office and Jeffrey slowly losing all of his already mastered motor skills from walking, crawling, eating, drinking and talking we went to INOVA for a cat scan and blood work. 

                Upon arrival at INOVA we were seen immediately and had a CT scan done with immediate results as well as a visit from a well known nuero surgeon  from Children's National (Dr. Myseros.)  Upon Dr. Myseros's arrival in our room they wheeled Jeffrey down for an invasive MRI of the head so that they could see exactly where the tumor had taken over.  After we received the results of the MRI, on a Friday night,  we were informed by Dr. Myseros that Jeffrey was scheduled for emergency surgery to have the tumor removed on Monday at 7am.  We were originally told that the surgery would take 8-10 hours but it ended up taking a very long 14 hours. 

                Jeffrey did very well through the surgery.  He was in INOVA recovering for 5 days.  His incision reopened on day 4 and had to be resticked.  However it went well and we were released the next morning to head an hour and a half home to continue to heal. 

                In mid May 2010 Jeffrey was back at INOVA for the insertion of a mediport for the use of chemo-therapy. This was a fast procedure that again went very well. 

                Jeffrey had Chemo-therapy from mid May 2010 till the end of June 2010.  His chemo was very high doses of Vincristine, Mesna, Carboplatin, Cyclophosphamide, Etoposide and Filgrastim.  Although as his parents this was a very trying month and a half Jeffrey proved to be very strong and push through like a true hero and fight!!  Following Chemo-therapy we were then in Boston MA. from July 5, 2010 until September 2, 2010 for Proton Radiation.  At this point Jeffrey had been sedated 70 plus times.  He does pretty well with sedation although like anyone he does from time to time wake up grumpy! 

                Still today 2 3/4 years later we still continue with routine MRI'S every 3 months  to be sure that the nasty brain tumor does not reappear.  He currently has a cyst that we believe is from radiation that we are continuing to watch. He still proves to be a very strong willed 4 year old boy!  He is currently in special education pre-school where he continues to receive occupational, physical and vision therapy.  He is our hero and always will be! 

                Furth more we are blessed to have been introduced to Casey Cares Organization who has helped lift  Jeffrey's sprits during his down times.  They have sent him to see some of his absolute favorite things.  Some activities that they have helped make possible for Jeffrey to attend and fulfill his dreams are monster trucks show, the circus, the CAPS game and most importantly for Jeffrey 4th birthday he got the trip of a lifetime to Walt Disneyworld to spend a week away from doctors and nurses' and needles!   His dream throughout his journey was to meet Mickey mouse!  All he did was watch Mickey on Television and cuddle with his big Mickey stuffed animal that someone gave him as a gift during treatment.  Casey Cares has helped us in so many ways look at the brighter side of our situation rather than dwell on things that we cannot change.  They sent us gift cards to go out to eat while we were at treatment.  We are so blessed to have the option of such a great organization to help support us in such a great time of need!  Casey Cares has in our book gone above and beyond for our family especially Jeffrey!  Thank you from the bottom of our hearts!!

 

 

Our Life!

Things for the Moore Family have been a rollercoaster ride but i must say everytime i look at these faces i cant help it but smile bigger then ever! 
Mommy was in the ER on feb 19th to find out she has kidney stones, gallstoned and a uti!  Poor mommy!
Daddy has been working so much hes beyond tired. 
Thankfully the children are healthy! 

A few updates!

So its been a while since I have blogged.  Things have been very busy for us.  The kids are doing great other then normal things. 

Jeffrey: Had his last scan after his October seizure and all was great as normal!  His levels are all great.  He goes for his next MRI on Feb. 11th at 7am.  He then goes to clinic on Feb. 20th.  We just went today to see Dr. Avery for his vision.  His eye nervous look great but his field cut is still there and always will be.  There is nothing they can do to fix it.  Jeffrey will need to learn to turn his head to the left side to see what is over there!  He has been Very busy like always.  His holiday season was fun filled for sure.  He went to the north pole and seen a lot of Santa!!  He was a good boy in 2012 and got a lot of kool gift for Christmas!  We are now getting ready for valentines day!  With him being a lover he is very excited to give extra love!

Skylar:  Our baby girl is 6 months old today!  Where has the time gone too????  She is so big and beautiful!  She is rolling, sitting up and pulling herself up!  She is currently on similac allumentum as she is lactose and tolerant!  She is a total diva and I love it as I am sure all the women in the family do!!  She was baptised on Jan 13th.  Her god parents are Donald Babb and Erin Moore.

Both children proudly cheered for the Redskins!! 

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!!