Boston Bound

Tomorrow we leave for Boston so tonight is a rush to get everything washed and packed. We are nervous and excited to meet the doctors and for William to have the studies completed. I am praying for answers to some of the problems he still has and hope there are safe solutions for him!


We have appointments set up for Monday and Wednesday - on Monday he has a swallow study and we'll meet with the team of doctors. On Wednesday he will be anaesthetised and have the bronchoscopy.


We're going to try to make the trip a small vacation for the girls too - so they are excited rather than nervous now...which has helped a lot!


Thank you for all the prayers, like everything else medically with William we're anticipating what we know is possible but preparing ourselves for the unknown.


Love, Emilie

6 Months Already!

Our sweet William turned 6 months old on October 18 - he's getting so big! He's cooing and trying to talk - even more so than his sisters did at this age :) I think he might speak before they did just to keep up with them. He has rolled over multiple times - from his belly to his back - but that is a big accomplishment for him since he doesn't get a lot of tummy time. (Because of his severe reflux, it bothers him to be on his back and tummy for a long time) Ellen, his OT, says he is doing really well though - he's meeting all milestones for his age! This is also really great because he isn't expected to catch-up until he is 1 year old - yea William!!




When we met with William's surgeon, he let us know that since William hasn't used his g-button in almost a month; he can remove it! He wants to leave it in just in case William has surgery because that is how he will eat, but once he is completely orally fed for 1 month - it will come out :)

Sleeping is something William struggles with, so hopefully after we meet with the doctor's in Boston, we'll have a better plan of action...or we'll continue to drink a lot of coffee! We are so blessed with our children and love seeing God shine through in them. He has given us 3 amazing gifts and our lives will never be the same.

Pumpkin Patch 2011

We went to the Pumpkin Patch we've been going to since Norah was a baby this month. It's so much fun and they have a lot of great kids things to do. Norah and Bella had a lot of fun picking out pumpkins and stickers to decorate them :)

Me with our "little monster"

Scarecrow Bella

Scarecrow Norah
Of course - scarecrow William :)
It's very hard to get three little ones to smile when there is so much to look at!

Isabella turns 3!!

I can't believe our Isabella is 3 already! Time has flown too fast and she is growing up so quickly. I love seeing her grow up but it makes me sad at the same time because I love her so much!! (I do feel the same way about Norah and William!)

We celebrated Isabella's birthday in our family style - twice :) She had a birthday party with the WHOLE family at the beginning of October outside at Bee Tree Park, which was fantastic! We couldn't have asked for better weather and she had so much fun. Her cousins came and she had aunts, uncles, and grandparents there. We made caramel apples and played on the playground....everything a 3 year old loves!

We celebrated just the 5 of us on her birthday...to quote Bella : "We're going to my birthday party at Red Robin!" which is her favorite restaurant (because of the balloons!). She was so funny - she looked so forward to the waiters singing to her and bringing her ice cream. After they sang and left, she looked at me with those huge brown eyes and said " They didn't sing Happy Birthday to me...will you sing to me?" I said they did sing and you're eating ice cream :) She let me know they didn't sing "Happy Birthday to You, Happy Birthday to You..." so we sang to her - Mommy, Daddy, and Norah (William cooed) and she lit up! She makes my heart swell with happiness!!

Here are a few pictures of our sweet Bella.

Isabella Rose - on her birthday three years ago

Bella opening her favorite birthday present from us - new shoes!!

Sweet smiling birthday girl!

Norah helping Bella open presents
Eating her birthday lunch!

Postponed...

Well, our trip to Boston has been postponed until October 31. The reason his appointment was rescheduled is that originally the surgeons in Boston were going to do surgery immediately following the bronchoscopy. We wanted to have an evaluation done instead which would include the bronchoscopy but not have surgery immediately following. Since there is a backlog of surgeries, they needed to give William's surgical spot to someone who needed surgery and we'll have an evaluation on November 1 instead.

We are trying to do as much research and have as much information at hand before our trip. We were able to find, through a long series of doctors and surgeons, a cardiothorasic surgeon at STL Children's who can do the aortopexy. The aortopexy is a surgery that will take the aorta and pull it towards the sternum and attach it there. This will relieve some of the symptoms of tracheomalacia William has. Tracheomalacia will not be corrected with this surgery, the only way it corrects is over time and hopefully by the time William is 5 or 6, his trachea will have hardened and be able to stay open by itself. The aortopexy won't be reversed and should not cause any problems as he grows.

The other surgeries the surgeons in Boston have told us about are if there is a recurrent fistula (the connection between the esophagus and trachea) and if he has a laryngeal cleft. We met with the pediatric surgeon who did both of William's surgeries at St. Johns and he is able to correct the recurrent fistula (it's unlikely William has one as he has no symptoms of this) and his ENT can do the laryngeal cleft surgery if needed.

We're eager to meet the surgeons in Boston so the tests can be completed and we can make a decision for William. We would prefer not to have him go through another surgery, but if it's the best thing for him and will relieve his blue spells and breathing problems, we'll do whatever is necessary. We're praying for God's guidance that he will help us make the right decision as to if William should have surgery and if so, who should do surgery.

Thank you to our families and friends for all their support and endless conversations to help us make a decision! We are so incredibly blessed to have such an extensive support system.

We'll keep everyone updated. (As a side note - I have some more "fun" blogs to put up and will try to do that this weekend!)

Love, Emilie

Fall Updates

We have launched into fall in STL! The weather is beautiful right now - and we hope it stays for a while! Bella was amazed this morning at the park when she saw the red leaves on the ground, and I think this fall is supposed to be really pretty, so hopefully we get to see all the fall colors!

Norah's class had their first field trip last week - to the apple orchard. Bella got to go with the class and Brian chaperoned. They each got to pick a bag full of apples, bounce on the "big pillow", and went down the tunnel slide. Brian was amazed the girls went through the tunnel slide because it was on the side of a hill and enclosed. They both loved it though! That afternoon, we made an apple pie and 4 smaller pies for dessert on Saturday night. We went to a friend's house of Norah's on Saturday night and had a great time.

Norah is doing so well at school and has learned so much. I love the days she has music because she comes home with new songs! This year is great because at the end of the school day she tells us things that happened throughout the day - games she played, things she learned, work she did, it's so wonderful to see her so happy!

We found out there is an EA/TEF program at Boston Children's Hospital. I talked to the doctors last week and they would like to see William to try to help with some of the issues he is having. We gathered all films, x-rays, and photos of William's surgeries and studies and sent them to Boston. They would tentatively like to see William near the end of October to run more studies and possibly have surgery based on if they find anything that is operable. We're praying everything is okay and that God helps us make the right decisions for William.

Bella is having her birthday party this weekend and is so excited! She turns 3 - 3! - in October. I can't believe she is already 3 :) She's doing such a great job at potty training and makes me laugh daily by things she says and does. Brian and I are convinced she'll be in theater or dance because whenever she is elevated - a sidewalk, a curb, a bump in the parking lot, a log - she treats it like a stage and sings and dances!

1st Day of School, 1st Haircut, and Baptism

The month of August and the beginning of September has been busy for us! Norah started school again in August and LOVES it this year - no tears!! She has the same teacher as last year which has helps a lot. She has a few of her friends in her class again this year because the Montessori Preschool classroom is 3-4 year olds and you can also choose to have your child in Montessori Kindergarten which are the 5 year olds. All of them are in the same classroom but they have different work they do based on Preschool or Kindergarten.

School as been wonderful for both the girls - they love being around each other when they are both home now. It's also been great for Bella because she's loved being the bigger sister at home and really enjoys helping with William.

First day of Preschool - our big girl is already 4!!

Norah and Bella - happy and full of "First Day of School Chocolate Chip Pancakes"!

Norah, Isabella, and William

Isabella had her first haircut last weekend! We were worried her curls might disappear when she got it cut; but it made her hair even curlier! She was such a big girl and sat so still during her haircut. Afterwards she and Norah got to have suckers while I got my hair done. It was such a fun day with "just us girls" and I think the girls have a new favorite thing to do on our day out!

Big girl Bella - she looks so serious!
All smiles!
Norah sitting so still - such a big girl!

Out to lunch for "Girls Day"

Sweet Girls - enjoying the salon!

This weekend we welcomed William into the Church family through his Baptism. We asked my brother, Paul, and Brian's sister, Elizabeth, to be William's Godparents. Our families were there and William was so wonderful throughout the Baptism.

Since we had to wait a few extra months for the Baptism, he wasn't able to wear the Baptismal gown that has been in my family for over 100 years. Generation after generation have been baptised in the gown - so William wore it draped over his Baptismal outfit. All three of the children were able to have the gown for their Baptism.

Elizabeth, Paul, Fr. Meyer, Brian, William, and Emilie

William, Brian, Emilie, and Fr. Meyer

William getting Baptised