Some more Avery cake pictures and Happy birthday Carl!

Happy Birthday Carl :) Avery has learned the "SO Big" game - and she loves to show it off now - even with fists full of birthday cake - if you look closely you can see some cake flying in the top picture :) Simply stunned that our baby girl is now 1 and Brenden is starting 1st grade in the morning - WOW!

Conner's new add for NTSAD

Day 4 post eye muscle surgery

So - it would seem that I can only get a picture of Avery's eyes when she's sitting in her highchair - she is one little lady on the move! If your seeing a pattern of new pictures - all with a blue gingham background - the secret is out, Avery is strapped in her highchair so she cant crawl away from me, or toward me to grab my camera. Today she stood all alone for at least a minute and took one step (it was really small, but still one) all by herself. She also had quite a good time with some tissue paper (shown in the last two pictures) What a funny girl!

My little football player!

These were from tonights football practice! Brenden is having SOOOOO much fun! #3 - thats his temporary number (and helps us to find him out there amidst the sea of orange and green) First little scrimmage is Saturday and Im really looking forward to it - I missed the practice scrimmage since it was the night of Avery's surgery.

Avery had her follow up with the eye doctor today and she is very pleased with how her eye looks - and we will re-eval in one month - but for now we will patch just one hour a day instead of 2, and keep monitoring. But - it was a good report for today - we like those kind!

Last week of summer vacation :(

My canvas is here! stunning

So...I ordered this for Avery's room - and had every intention of putting it there, but.......when it came and I opened the box - I was stunned by it and gave it a new home where I can treasure it every day! It now hangs over the fireplace , Avery right in between her brothers. Not shown are the large pictures of Brenden and Conner on each side of the fireplace. The canvas looks kinda small here in the picture - I assure you, it's not - it's HUGE! It's a 20x40 panoramic and it's simply stunning!

Avery is doing fine since her surgery, still cant get a handle on whether or not the eye is quite centered. It's hard to judge because she has the red sclera on that side (bleeding in the white part of the eye) But I can say that I believe it will be an improvement over where we were pre-operatively. So we just wait and see. She's doing fine.

She had her 1 year old appt the day before her surgery - she is tipping (or not really) the scales at 19 pounds, which is like the 18% percentile, And is 50% percentile for height. So next to the boys - she's my smallest one yet! To give you comparison, Brenden was 22lbs at 6 months - Avery's 19 at a year. Conner wasnt as big as Brenden, but not as small as Avery either.

The transition to whole milk - well...... she is taking that one slow. We will just keep trying. Im only nursing her at morning and night and 1/2 breastmilk, 1/2 whole milk bottles during the day. We'll try this for a while so I can unload all the milk I have frozen (wow, I had no idea it was that much)

And... the biggest news...... Avery took her first step today!!! (I think it will be a while before she's officially walking, but we are definitely headed in that direction!

Avery's eye surgery

Soooo today Avery is one year and 2 days old and she had her first strabismus surgery this morning. We weren't too sure if it was going to happen - she has had a touch of a runny nose for a few days, then got her 12 month immunizations yesterday and spiked a huge fever last night. We loaded her up on Motrin and woke up super early (5 :30am) and headed to University of Maryland. I kinda felt like a zombie throughout the whole thing - I only got 2 hours of sleep last night :(. What I failed to mention is that I started to feel pretty crappy yesterday - stuffy nose and sore throat - yuck! So - she did end up going in - the surgery it self was pretty quick - but she took a while to recover. She was one super cranky disoriented baby! We left the hospital about 10am. It's difficult to tell if the surgery was truly successful - her left eye is swollen and a little red - but we can see that her eye is definitely more midline. She does have to learn to use her eyes together all over again - so we'll see how that goes. She is up now and playing - still a bit off kilter - but she is doing pretty well so far! Thanks to everyone who sent us emails and such wishing us luck - means so much!

These pictures are 10 hours post operative :)

A very special birthday girl is 1 !

Brenden's football face

Brenden is having a blast at football (even though he looks miserable here) Maybe it's his football face? First game is a week from Friday - should be pretty interesting - the kids are......lets just say, a mess, at best - lol

Avery's alllllllmmmmoosssttt 1 year old!!!

So little miss Avery has a busy week! Her first birthday is Wednesday, then eye surgery friday - yikes! She is getting more and more difficult to photograph - she crawls away faster than a speeding bullet. That said - I am still planning a cake smash photoshoot on Wednesday - that should be good and messy! We had a great weekend at the beach, the last one for a while. I managed to get a couple decent pictures. A side note - just saw Governor Ehrlich on the news - he's still wearing Conner's bracelet - we love him! If he runs in 2010 - he definitely gets our vote!

Missing Conner!

I thought I would share this with everyone - I wrote it for my presentation at this years pediatric memorial service. I have been thinking about Conner a ton today and wanted everyone to know just how much he is loved!

Theres no tragedy in life like the death of a child - things never get back to the way they were. ~ Dwight David Eisenhower~

This famous quote has become one that Im sure we all can relate to.

I have had the unfortunate experience of of witnessing the deaths of children my professional career as a nurse in the PICU and also in my personal life with the death of my own child. I worked in the PICU for nearly 5 years before tragedy happened in my own family.

My son Conner was diagnosed very unexpectedly at the age of 7 1/2 months with a uniformly fatal, untreatable disease. I remember distinctly the very feelings that overwhelmed me when I heard those words that fateful September day. I remember feeling paralyzed with grief, shocked and stunned that in the matter of a few short months my seemingly healthy son would rapidly deteriote and become blind, paralyzed and unresponsive. We were forced to sit and watch our beautiful son slip further and further away with each passing day.

Working as a nurse I sat with parents as they grieved over their children, I held their hands, wiped their tears - and not once did I ever imagine that those very experiences would somehow help guide me through my own personal tragedy

I wrote this just days after Conner's diagnosis:

We all love him so dearly and it is hard to imagine life without him. Unfortunately, life has dealt us an affair hand, and it appears that our time with him is limited. This is a harsh reality that I must face head on. I must do what I feel is right in my heart and attempt to overcome this adversity and heartbreak. Conner is a truly special and wonderful child who has helped us to recognize the greatest of gifts "life". Life is truly a miracle and much too short.

I am going to make whatever time Conner has left on this earth filled with family, wonderful memories, and most of all, love. I do not have the luxury of time with my son. I can do nothing but follow my heart and make the absolute best of whatever time God grants me.

When I wrote that it was such a struggle for me. I felt as if I was watching my life just fall apart. I often would tell my husband that I felt like I was on a sinking ship all alone with no life raft. It's was literally like watching a glass break in slow motion that you cant quite grab in time even though you tried. Only the glass is your life that is slowly shattering into a thousand tiny pieces

Though it was certainly a struggle... I had made that promise to my son, my family and myself.

During Conner's illness - we never let the disease define us or our family - and after his death we did the same. We tried to maintain a "normal" life - or as the case may be - create our new normal. Building those core bonds as a family continued despite the utter devastation. We simply focused on our love for our son. In the beginning it was very hard to learn to take it one day at a time - but we had to learn that very quickly - if we wanted to make the most of the time he had. We wanted to build a lifetime of memories in such a short amount of time.

I think that when your child dies - it can truly cripple you - it can destroy you if you let it. And sometimes that is the path of least resistance. For me - I chose to do my very best to fight and not let it destroy me. Our grief is so thick - so complex - not many can truly understand the difficult life we face without our children.

My son died at the age of 22 months - he took his last breath here on earth as he laid in my arms. - This was 2 1/2 years ago. Today that memory is fresh in my mind - as if it was just yesterday. We have those sad memories - but we have thousands of happy ones too.

Dealing with his death is something that changed me forever. It is something that has empowered me to become a better person, a more compassionate caring person, and someone who is more understanding. I certainly am not the same person I was before losing my son- though I carry a a large burden - he has made me a better person.

I truly try to live my life to the fullest - though I may not always succeed - I always try to never take even the small things for granted. Even when Im sad and missing my son - I can see his face every where I turn and I find little reminders of him, and that makes me smile. He gave me 22 months of wonderful memories and taught me things that words just cannot express.

Since his death - I have done many many things to honor Conner. We have a small private family foundation in his name. I speak every year to the medical students - educating them about the kind of disease Conner had and how to deal with grieving parents. I mentor newly diagnosed families and also newly bereaved families. I have chosen to be an advocate for pediatric palliative care. Looking at it we have done a lot - but I think the most valuable thing I have done to honor my son - is continuing to make him a daily part of my family. When Im asked how many children I have - ....seems like a simple question - but for families like ours - it is a loaded question. My answer is simple - I have 3 children - I will always have 3 children. Conner is no less my child than my living children. Conner has given me an invaluable tool to now help others that are suffering a great loss. To help them cherish the time they have had and focus on the future.

Admittedly - there is always a missing piece - but he has helped me focus my loss and channel it into something positive - something I believe he would be proud of.

I miss him so badly but I am thankful that he filled our lives with so much joy, that the joy he gave me far overpower the loss. When I think of my son - I think of his vibrant smile and his fierce blue eyes, I think of the way his nose would wrinkle when he smiled and the distinct way he laughed. I choose to think of him positively and remember all the good times. Through my experience I had to take a good look within myself and decide how I could grow from just knowing my son. There were so many things he could never do - and never got to experience, He never spoke one single word, he never walked, but yet he did so very much for me!

I cant lie, it is extremely difficult sometimes - a piece of my heart and soul are missing forever. Sometimes my grief gets the best of me and sometimes I still cry for him. When I begin feeling sad, lost - and heartbroken - I try and reflect on some of the amazing things he gave me in such a short amount of time.

I thank Conner for so much - for making me who I am - for helping me grow and mature and for giving me the strength to continue without him. I am sad that Brenden only had 22 months with his baby brother and I am sad that our new baby Avery will only know him through our memories. But, that said... ultimately I am so thankful that for every second I got to spend with him - every smile, cuddle and touch has so much meaning for me. What a valuable lesson he taught me - to never take the simple things for granted. Just putting Brenden to bed every night, or rocking Avery to sleep - are incredibly special moments that I will treasure forever! Thank you to Conner for every thing you have given me -

We all must find ways to keep our children's memories alive. For us it can be as simple as blowing nightly kisses or lighting a candle on special occasions. Conner continues to be a very very big part of my daily life. He has shaped our family in a distinct way - he has offered us insight to the bigger picture. They say.. your better off loving and losing - than never loving at all - and for me that is so very true. I would never give up one single second I had with my son. For us, we celebrate the little things that so many take for granted. We truly cherish yesterday and dream of tomorrow, but we live today. We have so many truly incredible memories. We had to learn the hard way that in life you cant take anything for granted. We remember Conner for the incredible, amazing, vibrant, blue eyed baby boy he was and still is to us!

My son, though not here on earth is always with me - in everything I do

a couple of fun pictures to share :)

My attempt at explaining Avery's eye surgery...

Ok, so I will try to make this simple. There are 6 muscles (each muscle has a nerve) that controls the movements of each eye. One on each side and two on the top and two on the bottom. In embryonic development the area that the nerves are in for each muscle is extremely sensitive to any swelling - they believe that somewhere between 5 and 8 weeks gestation this area can become damaged quite easily resulting in strabismus (misalignment of the eyes). Avery was born with this issue and it has not changed at all over the past almost year. They believe she has whats called Duanes syndrome - which is basically a stabismus disorder that you are born with. Her's affects her left eye (which is the most common, also more common in females) Her left eye is sorta "stuck" if you will in a crossed position, in toward her nose. She can move the left eye out toward her ear when she looks down, but not like you and I do. In this disorder the nerve that controlls the lateral rectus muscle (muscle located on the outside of the left eye that moves the eye outward toward the ear) is either missing or became damaged during that sensitive portion of embryonic development.

So, her first surgery will take place next friday in which they will release a few millimeters of the medial rectus muscle in her left eye. (This is the muscle on the inside of the left eye - near the nose) Hopefully this will result in a more "midline" eye position for the left eye. It may take more than one surgery, and tweaking more than one muscle eventually - but this is our starting position. Also, we may not have an idea if the surgery is successful until about 4-6 weeks post-op. These conditions often require a few surgeries to achieve the most optimal outcome - which is maintaining bi ocular vision (using both eyes together) Kids have the unique ability to use just one eye , if they see crappy from the other. If this continues, the vision will permanently be damaged in the one eye that they sorta "turn off" - so this is what we are trying to avoid. We have been patching her eyes since about 3 months old - and tests show she is using both eyes so far :)

the surgery is outpatient and relatively short. She will have antibiotic drops or ointment for 7 days and may have some bleeding in the sclera (white part of the eye) for a few weeks. Actually it will bleed initially, but take a couple weeks to reabsorb, it wont be continually bleeding (we hope) It is all done through the eye socket - no visible incision or sutures and is a VERY common procedure for opthomologists.

It's still slightly more complicated that what I have explained here - but this is the general idea.

What?????? someone special is almost 1

I simply cant believe that my little Avery will be turning 1 a week from tomorrow. It's so hard to believe that she has grown so much over the past "almost" year. She still isnt saying "mama" or "dada" descriminatly - although she shouts "dadadadadadada" all the time. I think she is on her way to her first word - and it's the same one as Brenden. "DOG" She really sounds like she says it - very cute! She is definitely pointing and starting to wave and is good at giving five. She has also been known to give a kiss when asked - she just hasn't learned that there shouldn't be any tongue involved until she's much much older - lol. She also has started to push things away (food and drinks primarily) when she doest want them - or she just throws. Geez it's good to be home with the 4 legged cleaning crews - makes my job much easier! She has her next infant and toddler eval the week after her birthday. I always try to keep in mind that she really is just 10 1/2 months adjusted for her preematurity. She has also learned how to go down the step from the kitchen to the family room - she backs her little tush up and gets right down. We know she knows how to do it, but her preffered method is to get to the edge and whine until someone picks her up.

While we are at the beach for a total of 15 days, she and Brenden got quite a tan and Avery got a second tooth! We still arent sure what to do about her birthday (next wednesday) - the timing is all crazy because she has her eye surgery next friday. What a great birthday present huh? They were going to schedule her surgery for this friday, but we opted to wait until after her very special day. More on the surgery later. Im finding it hard to concentrate with Brenden running around next to me playing with Tucker and Avery wanting to get out of her highchair.

Football on the hottest day of the year!!

So football started tonight...yep, on the hottest day of the year with a heat index of 105 degrees - yikes. The kids did great, despite the heat. As you can see from the pictures, they worked so hard - even making sure to count any missing teeth - lol. My favorite moment was when they didnt know anyone was watching and they were checking out each others missing teeth. They skipped the full gear tonight because of the heat - but they sure do look cute in their tight little pants. Contact tackling starts next week , Brenden cant wait. He was doing sit up's in bed tonight - it was very cute! BTW, It only took 3 boil and bite mouth guards for Brenden to finally get it right - yikes!

beach beach beach!

Were finally home - and football starts tonight! More later....