Great news!

We are home from Boston. It was a short trip, and we didn't get to do our usual visiting, next time! Everything went very smooth on Monday. The same anesthesiologist from last year put her to sleep, and they let me walk her back. She did really well pre-op and had the staff laughing. The NP listened to her heart and lungs pre op and after she was done said to Katie "thank you for being cooperative" and Katie responded "no I Katie". Also when I took her back in the procedure room, and they were putting the mask on to put her to sleep, they asked her if she wanted some raspberry flavor, and her response "no I alright" They still put it on her anyway, but we all started singing Twinkle Twinkle, and she was better, and the gas kicked in. It's always a bit hard leaving your child, but I knew she was in good hands. Some tears shed, but expected, right? The whole thing took about 2 hours and we were able to see her right away. She had to stay flat for 4 hours post procedure, but shockingly she did very well. She was in a regular size bed so I could lay with her. Drugs and cartoons also always help! Thankfully, for her, Dora Christmas was on for the last hour:) The neuro radiologist and neurosurgeon were very pleased with the results. The neurosurgeon showed me the images and was smiling when he was showing me pics of the new blood flow. Figured a smiling neurosurgeon is always a good sign!!We were discharged around 3pm and hung out at the hotel. We left this morning, and the drive home was ok. She got a little cranky about 3 hours into the trip so we stopped at the mall in Nyack and gave her a break, got back in the car, and she slept the rest of the way home. Obviously we are thankful to be home, and this news is the best Christmas gift ever!!! Thanks again for all the love, thoughts, and prayers!!

Monday

It's hard to believe that's it been almost a year since Katie's surgery. (It was December 13th) We are driving up to Boston tomorrow for the follow up angiogram at Boston Children's on Monday.

Here is the wiki definition:)

Typically a catheter is inserted into a large artery (such as the femoral artery) and threaded through the circulatory system to the carotid artery, where a contrast agent is injected. A series of radiographs is taken as the contrast agent spreads through the brain's arterial system, then a second series as it reaches the venous system.

I obviously don't feel quite as nervous as last year, but it's still a little nerve racking. She will be asleep for the procedure and I think has to lay flat for 3 hours post procedure. She had one last year before the surgery, and did surprisingly well staying flat for 3 hours. Hoping she does as well this year!! Thankfully she likes to watch TV so we brought a ton of DVD's and there is a TV at the bedside.

Please just keep her in your thoughts and prayers. We are so much stronger because of all of you!!

Happy 3rd Birthday!

It is amazing how times flies!! I can't believe our little girl is 3! The last three years have been filled with some challenges, but Katie has become a great little toddler. She is full of so much energy and love. Because she turned 3, we had to say goodbye to her early intervention therapists, and now she will be in the intermediate unit. It was difficult saying good bye to such wonderful people. One of Katie's therapists was with her since she was 4 months old! They helped her and us through some tough times, and are truly amazing people. We were so blessed to have them all in our lives! Katie will still continue with speech once a week, and occupational therapy once a month.
Happy Birthday, Katie....

My sweetie

I usually post pics when I blog, but this time I decided just to write....We went to visit JJ's side of the family for Labor Day, and had a nice relaxing time. It's so nice to see Katie around her cousins, and see see how much she loves them, and tries to imitate everything they do. Her youngest cousin,Abby, is a little over a year younger than her. The last time we were together Katie was very jealous of her and didn't want her around. Thankfully this time they had fun together. Abby is a great eater and Katie did her best to keep up with her! Even Katie's oldest cousin, he's 11, played so well with her. My biggest fear is that people will treat her differently because she looks different, however I have thankfully been wrong. We are so blessed by the family and friends who love her so much and support us.
These thoughts are surfacing because Katie is turning 3 in November and will be "graduating" from Early Intervention,thus moving on to the Intermediate Unit. They met with her today, and I was very impressed. I'm not sure what I was expecting, but it's difficult sometimes to watch your child be "tested" hoping that they will answer "correctly". I guess we all just want our children to be their best. Since she is so much smaller than others, some at first, tend to treat her like a baby. That is one of my fears when she enters school. I did express this to the IU team, and their immediate response was "within 2 minutes of talking to her we could tell she has no cognitive delays". It was a relief to hear that. She will still keep OT once a month, to touch base, and they will be helpful when she enters preschool next fall. OT will help us and the teachers meet her physical needs...stools, special chairs, etc. She will also still receive speech, she has improved greatly, just some things to still work on. Although, I know I've said this before, but we may regret this in the future, I have a feeling she will never stop talking!! Here's the one thing she did that made me laugh out loud...the speech therapist has a book with different pictures on it...simple ones, dog, house, ball, horse....then there was a picture of a bird. When she asked Katie "what is that?", Katie's response was "a robin!" she was right, it was a robin....she' too much!

OBX

So we made it to OBX the week before Irene came. We had such a great time with our family. Katie so enjoyed her time with her cousins, and loved hanging out with "the kids" She was a total teenager, staying up until 10pm every night. Although she thankfully still took naps. She really enjoyed the water, beach, and pool. We were blessed with amazing weather!!
We know some of our East Coast friends have experienced the effects of the storm and hope all are recovering. We did get some water in the basement, but nothing we couldn't clean up. It actually forced us to unpack all of our boxes!


The beauty of the Outer Banks

Summer Fun

We have really been enjoying this summer, but how quickly it's passing us by! We've done a ton of swimming, and Katie really enjoys it. She loves jumping off the side, and has even jumped off the dive once or twice, with a little help from us! We are getting ready to head to the Outer Banks soon, and really look forward to spending time with family! I took her to the beach one time this summer, and she loved the sand, and eventually wasn't too scared of the ocean! My child better love the beach, I don't know what I would do if she didn't!!
We had her genetics appoint last week, and she was officially diagnosed with MOPD II, some places call it Microcephalic Osteodysplastic primordial dwarfism, and other places it's called Majewski osteodysplastic. We pretty much knew that, but they were able to isolate the gene and she carries mutations in the pericentrin gene. Basically JJ and I are both carriers of this recessive gene. There is a 1 in 3 million chance to have a child with MOPD II. We know Katie is special and feel very blessed that God chose her for us. She has brought so much joy in our life, and keeps us laughing everyday. She is super determined, and is always willing to try new things. Dr. Bober Katie's geneticist, was very happy with her growth. She's grown an inch in 6 months, and he said average growth is an inch a year. I don't really ask him expected height, not much I can do about that.( the internet says average is 3 and 1/2 feet) Apparently the doctors told my mom I would be 5'8", hmmm a bit off. I'm still only 4'11" and 3/4". Although my driver's license says I'm 5 feet!
She also had a repeat MRI/A about 2 weeks ago. The doctor called today, but I missed the call, she did say "her brain looks good" that's enough to allow me to sleep well. I'm sure I'll get more details, but that will work for now!

It's also been awhile since I posted any pictures.....here are a ton!





Just being happy!

Reading with Aunt KK and Abby

First Haircut







Loves to help Daddy!


Hanging out after picking berries with cousins

Our neighbors gave KT this awesome ride!

I will eat you lollipop!!!!

Finger painting, turned into body paint!!


We had to have a water table


July 4th

Love the icy pop

Tita's house

Five friends


I also realized I never posted pictures from my sis-in-law's wedding. Here are a few












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