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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Settling in...

So my last update started with, wow it's been a long time since I've blogged. Yet, again it's been a long time since I've blogged!! Clearly writing isn't my strength, but I'll try....

We officially moved into the new house over Mother's Day, and what a great gift that was!! Everything was painted, and somewhat put together, and now I can say we are even closer, I think there's only 10 boxes to unpack, not counting the pictures that still need to be put up! Katie is settling in very well, and loves her new purple room. She should, it has two closets! What more could a girl want!! We have been blessed with really nice neighbors, and the kids love to play together. They are a bit older than Katie, but do a great job including her in what they are doing. This is the first time we have ever been responsible for a yard, and am very blessed to have a mom who helps keep up with the weeding!!! We are in a great location, and have been spending much more time at the parks, which Katie loves, and calls them "play parks". JJ also has been working on many projects. He built me some awesome shelves in my walk in closet, and pull out drawers in the pantry. I think now his next project is a bench seat for the foyer. It's something he really enjoys, and now that we have a two car garage he has more space. Although come winter time, my car is going in the garage!!

It's so hard to believe it's all ready July!!! JJ's sister, Patti got married over Memorial Day,and we all made a trip to Cleveland. All the nieces wore the same dress, and looked so cute!!! Katie was the flower girl, and miraculously made it down the aisle. Thankfully, it was a short aisle, and she ran down without tripping!!! Everyone had so much fun, and loved dancing!! I will post some pictures, when I figure out where the camera cord is:) I'm a bit slow in the IT department!

What else.....we have really just been enjoying the summer. Katie has been doing great, and is talking a ton! I think we may have to stop her speech therapist from coming...I'm sure you are all shocked that my child is a talker:) She has recovered very well from her hip surgery and we don't follow up with ortho until September. She does have to have her eartubes replaced at the end of the month, and they will also repeat another brain MRI at that time. Thankfully they can do it at one time, with one dose of anesthesia. We don't go up to Boston Children's again until December.

I'll try to post some recent pictures soon!!!

Time Flies

Wow! I can't believe it's been a month since I've written anything. I have been meaning to get to that, but never did. Anyway, things have been busy, but going pretty well. We had one not so good week with another ear infection, but thankfully after a few days of antibiotics Katie was feeling better again! We see ortho again on April 25th, and we hope Katie will be able to get out of the brace. She is allowed to crawl, scoot, and even stand up in her crib. The only thing he said not to do was let her stand and walk out of the crib, which she figured out how to do two weeks ago. We do stop her, but it's also quite comical! I was worried she may have some difficulty walking after the brace came off, but I guess since she can walk with it on, I shouldn't be too worried. Also, she calls her brace "her huggie". It's pretty cute to hear her say, "huggie on" or "off" depending on her mood! Her sleep pattern is still a bit off, but thankfully during the day she has been very pleasant, and has a good appetite. Honestly, it hasn't been as hard as I imagined, but we are still anxiously awaiting the brace coming off!! My cousin gave her a ton of Little People toys, and she has really been entertained by those. She still loves reading, coloring, and we even have thrown in some flashcards! Oh, yes, we have become flashcard parents:) She really has been quite a trooper, isn't it amazing how children can handle so much more than adults!?!?

As for the house it's coming along. JJ has been working really hard getting things together. Most of the painting is done, and Katie's bathroom is also close to being done. So we hope to get some unpacking accomplished this weekend. Maybe moving in by the end of the month. My mom has been so helpful, and hasn't kicked us out yet:) even though her peaceful sunroom is now a playroom!! We were also very lucky to have JJ's mom and her friend come from Cleveland to help us pick colors, carpets, etc.. for the house. Last time we painted our house pink, not this time!!! We're excited to have everyone visit once we have our act together.

We really are looking forward to Spring and Summer, getting geared up for playgrounds, and swimming!! Also JJ's youngest sister is getting married over Memorial Day, and Katie is the flower girl, fun!

Well, I guess that's most of it.

Tea Party

Reading with Grandma

Concentrating on Coloring

You Caught Me!

Loves to Smell the Flowers

Happy Face!