Happy 3rd Birthday Emma!

I can't believe that this post is 1 month late! Even more so, I can't believe that my little girl is already 3 years old!!! Where did the time go?

Emma had the never-ending 3rd birthday celebration. We decided to have her big party a few weeks early in Texas before we moved so that she could celebrate with all of her friends. We held her party at a local gymnastics club and she had 8 of her neighborhood friends come and celebrate with her. They did all sorts of fun things including climb a rock wall, jump on a trampoline, swing on the uneven bars, traverse the beams, play "freeze" when the music stopped, and the fan favorite, jump into a big pile of foam blocks. The kids managed to burn off tons of energy and then sat and ate Emma's favorite Chik-Fil-A followed by a Disney Princess cake. Emma was in absolute heaven all day long screaming that it was her birthday and extremely excited to dig into her hand picked cake.

In Michigan she then celebrated with Nana and Papa and was again spoiled with tons of gifts. She also celebrated with Uncle Ryan, Aunt Becky, Darian and Kennedy. (It was nice for her to celebrate in person with lots of her relatives as she doesn't usually get to do so.) Once we moved to Virginia, Grandma and Grandpa Big John were here to celebrate with her and spoil her with her very own John Deere. (She loves riding on Grandpa Big John's lap while he is on his John Deere so of course he had to buy her her very own!) All this celebrating and it still wasn't her actual big day! On the day of her birthday we celebrated with our family of four and took her to another favorite high class restaurant - McDonalds. We followed it up with some ice cream and came home to open even more presents. What a spoiled, loved child! When all said and done I can't even remember all of her gifts but here is a short list of goodies: All of the Disney Princess dolls, Ariel purse and necklace, clothes, new bubbles and sidewalk chalk, Dora DVD, puzzles, furniture for doll house, Watson the stuffed animal that reads her a story, Toys R Us gift card, backpack with her embroidered initials, Bambi DVD, and the list really goes on and on.

At 3 years old Emma continues to be a very confident, independent child. She really wants to do everything herself with as little help as possible. She loves to dress herself and is especially proud that she can buckle her own car seat now. She is extremely talkative and is always asking "why?" She is very inquisitive about life in general which can be annoying after she asks "why" for the thousandth time in one day, but more often than not it is refreshing and adorable to see the wonder in her eyes. She LOVES to "read" books and does it all the time. She also loves playing with all of her princess dolls and has started to ask about the Castle that Cinderella lives in. She also says all the time "I want to go to the Castle." Dad is in big trouble - I think a trip to Disney is going to be in the near future. I really love this age because everything is so magical to her. Just a simple carousel ride puts a huge smile on her face. The Disney trip has to happen while this magic is still alive in her and she believes in all of the princesses and characters.

Emma also loves to be outside. She would be happy if I let her play outside all day long. She loves to ride her bike, play with bubbles, play with sidewalk chalk, ride her new John Deere, ride her scooter, run through the sprinklers, play with Play-Doh, or just simply help mom water the flowers. Any excuse for her to be outside and she takes it!!

Emma has also started taking swim lessons. Thank goodness! Our fearless child has already jumped into the deep end 2 times this year on purpose although she can't swim. I will be much more at ease around the water when she can swim a little bit. She is doing a great job. The teacher is working on her kicking with her face under water at the same time. She has already come a long way with just 3 lessons.

We are so thankful everyday that Emma is in our lives. We love her so much and she brings so much happiness, love, and especially laughter into our world. Happy birthday to our 3 year old!!!

The birthday girl

Posing with Avery and Lexie before her party

Jumping into the blocks

Anna (and of course her paci!) at Emma's party

Freeze!

Making silly faces with all of her friends

Daddy with Anna

And finally....she gets to eat her cake:)

Showing off some presents from Nana and Papa

All smiles as she tests out her new John Deere

Opening her presents

Emma coming out to see her new ride

Anna is Crawling!!

Anna is officially crawling! Wanted to post a quick video so that everyone could see her in action. She had an appointment with the developmental specialist on Tuesday and the doctor said that she is completely age appropriate both cognitively and developmentally. We are so very proud of her!

Also posted a video of Emma doing a somersault. She is such an acrobat! Still working on uploading those birthday pictures of her never ending birthday celebration.

Tuberous Sclerosis with Infantile Spasms

Tuberous Sclerosis with Infantile Spasms. This is a diagnosis that as of 1 month ago not one single person in our family had ever heard of. Unfortunately this has become part of our everyday vocabulary. Our beautiful, sweet baby girl Anna has been diagnosed with this and consequently our lives have been turned upside down, inside out to put it mildly.

A few weeks ago, just two days prior to the movers coming to pack our home in Houston, as I was feeding Anna in her highchair she rolled her eyes back into her head and did a very slight head bob. The head bob was like any adult might do if they were falling asleep watching TV. She immediately picked her head up but it happened again 3 or 4 times. I called Jay over to see her because I immediately thought it was strange. We knew she was tired though and decided she needed a nap. She slept for 3.5 hours so we chalked it up to being tired. The next day came and she did it again. There were about 7 or 8 times in a row where she would roll her eyes into her head and then her chin would fall down. I began to suspect that something just wasn't quite right. I called our pediatrician and got an appointment for the following day which happened to be the day that the movers were packing all of our home goods onto the trailer. Anna started to have the episode right in the pediatricians office (what are the chances of this happening?!?) so I quickly ran out and grabbed the doctor who was with another patient and made her come to witness what Anna was doing. Our pediatrician wanted Anna to have an EEG (a test that measures the brain waves and often tells if the person is having seizures or not) but didn't feel like it was something that was urgent enough to have to be done before our move to Virginia. This happened to be a Tuesday and our flight home to Michigan was on Thursday. (We intended on flying to MI for about a week in between our move from Texas to Virginia. It was taking the movers 10 days to deliver our goods so we thought it would be nice to spend the time with family instead of driving across the country. It also happened to be Easter weekend so we though it would be nice to be with family.) She told me to schedule the EEG in Virginia once we got settled in. The very next morning I received a call from the doctors office that they found an open spot for an EEG in the medical center of Houston. The movers had already loaded our cars and we didn't have any way to get to the appointment. We REALLY wanted to get the EEG done ASAP as we were starting to really worry about what was happening (her episodes were happening on average once per day.) We were about to call Enterprise to rent a car when our good friends and neighbors totally changed their schedule so that we could use their car. (Thank you so much Brian and Jamie!!!) We got the EEG done on Wednesday, flew home to Michigan on Thursday, and I called the doctor on Friday afternoon to see if they had gotten the results to find that the office closed early for Good Friday.

We thought we would have to wait until Monday to hear the results when my pediatrician called about 5pm on Friday. She told me in no uncertain terms that the EEG was extremely abnormal, that she had consulted with 2 different neurologists and that we needed to take Anna to the nearest children's hospital NOW. She was adament that we not even bother with any hospital except a children's hospital. This phone call is a mothers worst nightmare come true. I was in utter shock and panic. I knew something could be wrong with Anna, but I never imagined it would be so serious that I would have to pack up and leave immediately. Needless to say we packed our bags and were out the door in less than 15 minutes to go to University of Michigan Mott's Childrens Hospital. It is about a 2 hour drive from where we were and the best children's hospital in the state. She even called the hospital ahead of us and told them to expect us and that she wanted us to be admitted for further evaluation and gave the results of the EEG to the on call ER doctor.

The next 5 days were spent in the hospital on a roller coaster ride. Anna was poked and prodded a million times. By the time we left she had an MRI for which she had to be completely sedated and intubated, EKG, continuous 24 hour EEG, renal ultrasound, echocardiogram under sedation, opthamology exam, multiple blood draws, IV's, and the list goes on. The 24 hour EEG of which was under continous video camera monitoring was awful because she was on it from Sat early morning until Monday and because the leads from her head were hooked to a machine she was "stuck" in a 5 foot radius in the room. We couldn't walk around with her or barely move with her. She was miserable. Although she was admitted on a Friday night we couldn't get the MRI done until Monday afternoon, which was the diagnostic tool that was the most needed. Jay and I were on pins and needles all day Monday and overnight as we knew our neurologist would have the results for us first thing Tuesday morning. At this point we already knew what we were hoping for - that Anna was having infantile spasms (a form of seizures) without any cause. We were hoping and praying that the MRI didn't give us any reason or cause for the seizures. If it did - her outcomes were potentially much worse.

I knew the second that the neurologist walked in that we were getting the worst news imaginable. She said immediately that Anna has Tuberous Sclerosis. I don't remember any of the rest of the conversation. I just remember at that very moment that my heart broke. It didn't just break into a few pieces. It was completely shattered into billions of pieces that would never be able to fit back together again. The mothers worst nightmare of a terrible phone call saying that you needed to take your 7 month old baby to the hospital was nothing compared to the neurologist telling you that your own piece of human flesh has a terrible rare genetic disease. One that has caused her to have at least 20 benign tumors called tubers in her brain. And that she may also have these growths in her kidneys, heart, eyes, and lungs. The tubers may cause her to have complete mental retardation, autism, learning disabilities, or in the lucky few, lead a normal life. One of the first things that popped into my mind after receiving the news was how many times I had said to my family and friends "We are just so lucky to have 2 healthy, beautiful little girls." Wow. This was no longer true. I don't have 2 healthy girls. This is a thought that I still have a really hard time grasping and fear it will be a long time before I do.

At this point I should give a brief overview of Anna's manifestations of Tuberous Sclerosis (TS). She has about 20 tubers in her brain, tests reveal none in her heart or eyes, and she has one small cyst in each kidney less than a cm in diameter. In a nutshell, the medical community knows very little about this disease. Some people live normal lives while others are completely mentally retarded. The number of tubers in the brain does not correlate at all to outcomes. Those with a lot of tubers could be completely normal while those with just one could have severe autism. The disease can be associated with motor delays (such as difficulty crawling, walking, etc) but is more known for cognitive delays. Some people with TS have the infantile spasms and some don't. In general, there are worse outcomes for those that do have the spasms which is why the #1 main goal is to stop the seizures. To this point Anna has met all milestones and from the outside looks like a normal 8 month old baby, which is why it is still so hard to believe that she isn't healthy. Her bloodwork has been sent to a lab for a DNA test to determine exactly which gene is affected. After the results come back Jay and I will also be tested, although in 2/3 of patients the genetic mutation happens spontaneously during formation meaning that most likely Anna didn't get it from Jay or I.

We were discharged from the hospital on a Wednesday and by Friday her medicine had been overnighted to us to begin. Anna is taking Sabril in hopes to completely stop her seizures. It is such a rare drug and given only under the most strict guidelines that it cannot be carried by normal pharmacies. In infants who have infantile spasms the main goal is to stop the seizures ASAP. Research shows that the quicker the seizures stop, the better possible outcomes for the patient. Anna has remained completely seizure free since starting the medicine and she has had one follow up EEG since leaving the hospital which was completely normal. (That was our one piece of great news prior to leaving MI to move to VA. The neurologist was even shocked to see that Anna's EEG was completely normalized.)

Since our move to VA Anna has been seen by the lead physician of a specialized Tuberous Sclerosis Clinic. There are about 20 of these clinics nationwide and we luckily live only 30 minutes from one and pray that it will assist in getting Anna the best possible care. The neurologist, Dr. McClintock, is a very nice man who spent an entire hour with us. He answered (or should I say couldn't answer because the medical community just doesn't know that much about this disease and definitely can't give us any kind of prognosis) pages of questions and outlined our treatment plan for Anna. First and foremost we need to make sure she stays seizure free. He warned us that seizures can return on the current medicine Anna is taking and if this happens we may need to increase her dosage. She is on the lowest possible dose which is a good thing because the main side effect of Sabril is peripheral vision loss.

Because of this possible vision loss she has to be seen by an opthamologist every 3 months. We have already met him and outlined our treatment program to monitor Anna's vision. She will need to be completely sedated after one year of age to perform an ERG and OCT - two tests that basically look at the anatomy and function of the retina and measure the dimensions of the optic nerve. If the nerve degenerates more than a certain amount then Anna is at risk for peripheral vision loss.

We have an appointment in another week with a developmental specialist to make sure Anna is on track both developmentally (meeting motor milestones such as crawling and walking on time) and cognitively. We also have another appointment for an EEG to make sure her brain waves remain normalized. All we can say is thank goodness for health insurance!!

In the midst of all of this we have moved, Emma turned 3, and Jay has had a birthday. Our lives have been chaotic to say the least. Jay and I both agree that in some strange way timing was the best that it could have been with Anna's diagnosis. We just "happened" to be in Michigan where we had the support of all of our family. They were there to watch Emma while we were at the hospital for 5 days and to help us try to make sense of everything.

As we struggle to accept the fact that Anna has this terrible disease please keep praying for her. The hardest part for us is the fact that this is a forever thing. Tuberous Sclerosis will forever be a part of our lives. It isn't going away because we have left the hospital. Long after the worst days of getting the initial diagnosis are over we will still be attending Anna's doctors appointments and learning about the disease and striving to get the best possible outcomes for her.

And we wait. We won't know how Tuberous Sclerosis will attack Anna. We don't know if she will have autism, learning disabilities, or lead a normal life. We have a lot of waiting to do until we find this out and those days are hard. Not a minute goes by that I don't think about Anna's future and what it may hold. I wonder how it will affect Emma? Will Emma and Anna ever be the best friends I had hoped and share all of their secrets? My questions are never-ending. Although I know I may be a bit emotional at time, I hope that documenting and writing about Anna's treatment on this blog will help me to cope with her diagnosis. Not only to cope with her diagnosis but to cope with the waiting and the unknowns.

A good friend told me in the midst of all of this that "We love her just the way she is." That is the one statement that I keep coming back to. We do. We love her just the way she is. It doesn't matter what the future holds for her - although we want her to lead a normal life - but if she doesn't, we love her just the same. And we always will.

Here is one sad picture of Anna in the hospital attached to the EEG leads that had her basically tied to the crib. I will do my best to update the blog with all of our other pictures as soon as I can. I have a ton of birthday pictures for Emma (it was a never ending 3rd birthday celebration!) It took over 2 weeks to get cable and internet in our new home so I am really behind!

Neighborhood Crawfish Boil

This past weekend we had our neighborhood crawfish boil/going away party for us:( It started at 3:30 in the afternoon and the kids all headed over in their swimsuits to start the summer pool season! We sat Emma down immediately and told her that she had to have mommy or daddy with her when she went anywhere near the pool and that she wasn't to even put her toes in without us next to her. Not even 5 minutes later she jumped right in to the deep end and we weren't near her!! Thanks to Mr. Brian who happened to be in the pool and saved our little munchkin for us. That was a great lesson for both Emma and for daddy (who happened to be in charge when it happened). You can't take your eyes off from those kiddos for one millisecond when water is involved.

The rest of the day (and night!) was fun filled with swimming, good food and drinks, and great friends. The neighborhood gang did have a few surprises up their sleeves for us though. First they presented Jay and I each with a gift. Mine was a canvas painted with a Texas star with the names of all the families in the neighborhood and handprints of all of the kids in the neighborhood. The edges of it reads "Good friends are like stars, you don't always see them but you know they're always there." I cried in front of everyone when I opened it (I am such a sap these days!) It was just so thoughtful of all of our friends to make this for us. We really are going to miss our awesome group of friends! Jay's gift was a road sign of Blue Opal Ln. - the street we live on. It will definitely always remind us of the great memories we created in just one short year. Later in the afternoon Mark, the host of the party, told his story of coming home from his families spring break trip to find the For Sale sign in front of our yard. They were extremely disappointed but didn't know who to blame. He said they couldn't blame Jay for wanting to further his career and they couldn't blame me because they all knew how disappointed I was about the move. They decided to blame mother Exxon and pulled out a Tiger pinata for all of the kids to beat with the bat! HOW CUTE!! Jay took a swing at the Tiger and broke the bat and I even got a good swing in. Lets just say that the pinata won and nobody could break it open!

We have one week left so we haven't officially said our goodbye's but I know they are coming. We really have created some special memories in our awesome neighborhood. Enjoy the pics!

Anna breaking out the sun hats for the season

Emma's silly smirk I could seriously take a million swimsuit pictures - they are just too adorable!

Brave Emma holding the crawfish

One cooler of crawfish before the boil

Yum Yum! Lovin Woody's hat!

Jay enjoying some crawfish with Jamie

Avery ready for the pool

Mark presenting the Tiger pinata

Woody getting in a good swing

Kim and I

My canvas sniff, sniff

All the kids playing on the golf cart. Emma is driving - what a scary thought!

Anna all smiles today after lunch

Emma with her tball

Even Emma got a swing at the pinata!

Brave Emma

Emma and I had a dentist appointment this week. She was SO excited to go and have her teeth cleaned. She asked all week if we were going to the dentist that day. Then she would say "I am a big girl. I am going to have my teeth cleaned at the dentist. Sissy's not a big girl. She can't have her teeth cleaned." When we got there I had my teeth done first and she watched me. When it was her turn she immediately said "I am not getting in the chair." She started whimpering and clinging to me. I told her that big girls have to get their teeth cleaned and bribed her with Chik Fil A for lunch. (We had 2 showings on our house that day so we had to be out of it at lunch time anyway. I figured I would use this to my advantage and try a little bribery.) She was VERY nervous but climbed in the chair and proceeded to follow all the directions of the hygienist. She let her clean all of her teeth and then brush them too. It was absolutely hilarious to see the hygienist brush her teeth with the electric brush because Emma couldn't control her tongue and it was following the little brush all around. She did such a good job - a huge improvement from last year when she screamed bloody murder the entire time. My little girl is growing up!!

Check out the cool star sunglasses she got to wear!

We are still alive....and have big news!

I realize it has been FOREVER since my last post, but we have been extremely busy. Jay and I recently found out that he has been transferred (AGAIN) to Fairfax, Virginia. We haven't even been in this house for one year, so it came as a little bit of a surprise. ExxonMobil doesn't give much time for their relocations either. He found out in the middle of March of the transfer and his effective date is April 15!! Needless to say we have been super busy getting our current house on the market and traveling to Virginia trying to find a new home. The weekend after we heard the news our flight was booked for Jay and I to fly to Fairfax on a home hunting trip. Grandma flew down here to watch the girls while we were gone (Thank Goodness! I can't imagine having 2 kiddos tagging along trying to find a home.) It was an extremely stressful weekend and to make matters short, after a price increase, looking a bit further away from work than first anticipated, and a bidding war we have a contract on a house. It is 25 years old with very outdated bathrooms and kitchen appliances. It does, however, have updated granite counters in the kitchen and was immaculate throughout. Anyone who knows me knows that I like clean!! (On a sidenote, we were both appalled at how utterly filthy many of the homes that we went through were..GROSS!) It has a very nice back deck and we love the neighborhood. It is a master planned community with a couple pools we will be able to use this summer. We just had the inspection this past Friday and everything turned out pretty good. I will post pictures of it once we move in. We did get a extra day to spend with Grandma while she was here visiting. We took the girls to the Houston Livestock show and rodeo with our neighbors Kim, Lexie and Chase. The kids had a great time seeing the animals, in the petting zoo, riding the rides, and of course eating junk food! Emma was extremely scared of the cows at first because they were just sooo big to her. She quickly warmed up to all the animals and had a GREAT time. The very next weekend Nana and Papa came into town to watch the girls for a trip Jay and I had planned for a long time to visit our best friends in Milwaukee. It was BAD timing that we had to leave two weekends in a row, and I never spend a minute away from the girls. I missed them lots but we had a GREAT time as always with our buds. I was super excited to meet their newest addition, Owen, for the first time and of course to see their oldest son Ben again! We even got to go out for dinner and drinks kidless one night while Jay's cousin Laura babysat! She lives in Milwaukee now too and we had fun seeing her new apartment and hanging out with her as well. It is always so nice to spend time with Phil and Aimee ( and their growing family)! We are already talking about a possible trip next winter....maybe to Key West again since we had so much fun there last time! Since we have been home we have been busy planning all the details of our move and being kicked out of our house for a lot of showings (A good thing overall - but a pain nonetheless!). Looks like we have 10 days without our stuff once the movers come at the end of the month so we have decided to ship both cars to Virginia and just fly home to Michigan for a week. Much easier than traveling across the country with two little ones and staying in hotels every night. At least the girls will be able to take naps and see family in the interim. Jay and I will then fly to Virginia to close on the new house and unpack for a couple days before Grandma and Grandpa drive the girls to their new home. (Seriously, how did we work such an awesome deal!! We don't even have to drive the 10 hours with the kids. Thank you Lord for Grandparents!!) The next couple weeks here are going to be nonstop busy. We have lots of last minute doctor/dentist appointments. Emma is going to have an early birthday party here with all of her friends (since she didn't get one last year because we were moving at the same time!!) and we have a couple neighborhood gatherings - a fun crawfish boil, Bunco and an Easter egg hunt. I am actually very happy that we will be so busy because I don't want to dwell on the fact that we are moving:( We love Katy and our awesome neighborhood and friends and I am very sad to be moving so soon!! I know once we get to Fairfax we will most likely love it, but it is so hard to leave! Enjoy the pics below......it may be a while before I post again!

Anna is sitting up all by herself. 7 months already!!

Sweet Anna enjoying the sunshine Emma playing in the fountains

Emma and her sweet friend Avery. They were absolutely ADORABLE in matching outfits - unfortunately I didn't get a good picture

Our new home. Yes - that is as close as they let you get to the White House. As my friend said best, we are working on kicking the current squatters out!

Jay and I in front of the Capitol

Grandma trying to tell Emma that the cows aren't scary

Emma intently watching a new baby chick coming out of its shell

Got Milk?

OK Emma - it is a petting zoo. Not sure if you are really supposed to hug the sheep!!

Emma and her pal Lexie having a great time on the rides

Emma and Grammy on the Carousel

Mommy with Anna - looks like she enjoyed the rodeo too!

Nana and Papa with the girls

Baby Owen

How sweet! Ben giving Owen a kiss!

Cousin Laura with Ben and Owen

Aimee, Laura, Owen and I

Emma trying to roll down a hill at the rodeo. It was quite funny to watch.

Running in the fountains.