Flower Nazis--Really?

So we got notification from the cemetery that there are "new regulations" regarding flowers and decorations at Crown Hill. They are sending me a brochure regarding the details but they did tell me that you can only place flowers, in an approved vase, for special occasions such as birthdays and holidays. To do this you have to stop at the cememtery office and record the special occasion with them, then they will give you a pink tag which allows the flowers to remain for a week....really? Can the special occasion be that I miss my sweet little Sophie and was thinking about her and wanted to take some flowers? What if my parents are in town and want to go by the cemetery. Now I realize we can go there and not take anything, BUT it is a part of the process. There are families that have pinwheels, toys, stuffies, flowers, etc....it doesn't look tacky to me, it looks like families are grieving and honoring and remembering their loved ones...this is a cemetery, not a covenant controlled community. I think a lot of people might have made a different choice about where to inter their loved ones had they known that even placing flowers is limited. I used to go every Friday, it is important for me that her grave not be abandoned, that people who walk by there know she is loved and remembered...

Mike's theory is not to worry about it, to do what I want to do because what are they really going to do? I doubt they would evict Sophie...but even if they did, we'd just bring her ashes home. So that is what I am going to do. On Monday it will be two years since she died---I'm going to cover her headstone in flowers...ha!

Too Good to be True

So I had a bit of an ephiany today. In wondering why it has been so hard to do the things we need to do to move foward--get a new kitchen in the rental condo, exercise, set and keep goals--it occured to me that maybe subconsciously we don't want to move forward. Not for the obvious reason of leaving Sophia behind, but more because if life gets really good again something bad will happen. You know when Sophie was born, I had two healthy children, a great husband, house, job, Rachel.. I was dumbfounded because I never thought my life would be that good...i said as much to Mike all the time...like things were so good that I was worried something bad would have to happen to cancel it out. Of course I was thinking something more like me getting cancer or a tree falling through the roof. Anyway, I finally convinced myself that I was generally a good person and really deserved everything I had. Then Bam---it all was shattered. And that is why I think I am afraid to move forward....

Happy Birthday Little Angel

Dear Sophie:
Yesterday would have been your 3rd birthday. It is so hard for me to imagine what you might have looked like so grown up. Everyone said you looked like Suri Cruise when you were a baby and when I see pictures of her now, I wonder.....I'm sure you would be much cuter since Daddy and I are so much better looking than Tom and Katie!!! I do know that you would be so big..talking in full sentences, sleeping in a big girl bed, potty trained, playing with little friends....I really wish I could see you today.
Daddy, Rachel, Annie and I celebrated your birthday on Sunday at the cemetary with cupcakes and balloons...did you catch the balloons like Daddy hoped you would?
Time goes by sweet darling, and I still miss you every single day. Sometimes I worry that I am not sad enough anymore...I have to believe that you would want us to be happy, to celebrate you and honor your life by living ours to the fullest. We are trying.
I hope that you continue to visit Annie, and while you're at it creep across the hall and snuggle with Mom and Dad. I'd give anything to hold you again.
Happy Birthday tiny boo
Love,
Mommy

And the Merry Bells Keep Ringing (Mostly)

We are still doing really well...I was remembering last year forcing ourselves to put up a tree and do the shopping, this year we have a beautiful tree, put up several weeks ago, the whole house is decorated and we are really happy...mostly--there are still moments--like hanging Sophie's baby's 1st Christmas 2005 ornament on the tree...of course she wasn't born until January 2006, but my plan was to have her here by Christmas!!! It is so much better though and despite little moments of pain I am really enjoying this holiday season (as my credit card bills will surely show in January!)
If there is one gift I could give this year it would be to let other parents out there who are suffering through their first holiday without their precious children know that it does get better. It takes work, it is still painful, but you will enjoy your life again. The biggest challegne to getting there for me has been accepting that I don't have to feel guilty about feeling happy. Moving on does not mean forgetting, Sophie will always be a part of our life, not just for Mike, me and the girls, but for everyone who knew her, or supported us. You never know when you might just be having the best day cruising on the highway singing Feliz Navidad at the top of your lungs and the next thing you know you think of your child and you burst into tears...but these moments occur less often now and we take time every single day to realize the amazing life we have. People wonder if I have a hard time around babies, I don't--I love them. I held my friend Mary's baby for a long time Saturday night (5 weeks) and she was so warm and soft and sweet, but it didn't make me pine for Sophie, it made me so happy for Mary and Mike that they have his amazing little being to hold, to watch grow, to keep them up all night!!!! No, my pining for Sophie is truly centered around me, our house, our memories......
Thanks again for loving us......

Happy Halloween

Another Halloween gone by---much, much better this year. I didn't get sad at the daycare party or trick or treat street. Tonight when I was taking Annie around begging for candy I even dressed up (vampire)...it was fun. I did feel a little nostalgic when I saw families going around---you know all the sibling groups--Annie was great though (Evil Princess). I think next year I'll make sure we group up with friends to go......I was thinking it is probably a good thing we decided on cremation--I'm not sure I could stand all the skeleton and rotting corpse decorations otherwise.

I hope to get to the cemetary tomorrow--I like the idea of Dia de los Muertos the Mexican holiday where they celebrate the life of loved ones who have died. I am going to see if I can find a sugar skull at a mexican grocery...you are also supposed to bring the foods the person loved as a gift. I'm not sure it is allowed--leaving food at the cemetary...but really, what are they going to do--kick us out?

Looks Like We Made It

Yesterday was April 27, one year since sweet angel Sophia Noel took her last breath. It seems like forever since I have held her in my arms. We made the weekend a busy one, which turned out to be the right think to do, at least for us. I really struggled last week at work and kept losing it, but Friday night my friend Tina flew in from Atlanta, and a bunch of my friends (Cathi, Kathy, Kristin and Shannon) came over and we made Team Sophie T-shirts--oh and drank a bunch of wine. It was fun and we laughed and cried a bit, it is amazing to have such incredible friends. After going to bed at 3:30 a.m. and getting up at 8:00, Saturday was a bit of a challenge...we had a birthday party (for a two year old!) and then had to get everything ready for Sunday
Sunday itself started a little strange. As we were getting ready an ambulance screamed by right around 6:00 a.m.--it doesn't happen by our house very often so it was a freaky coincidence and it really threw Mike and I for a loop. Then Mike was getting a backpack ready to go and pulled out one of Sophie's pacifiers. It was too much. Amazingly the rest of the day was pretty incredible, about 40 people showed up to run or walk with Team Sophie, all wearing t-shirts with her picture on the back. It was hard to be really sad with that much love and support surrounding us the whole time. We came in nearly dead last too.....but nobody cared!
At the finish line Sophie's day care teacher Miss Laura, who we hadn't seen since last summer--noticed Sophie's picture on the back of someone's t-shirt. She waited around for us and was so sweet. They still think about Sophia at the Wooden Shoe and were headed out to the cemetery to place some flowers.
Today Mike and I are mellowing out at home, trying to decompress. I feel as though maybe we have turned a corner, having been through the firsts (birthday, christmas, easter, etc) but maybe it is just wishful thinking.....Thanks everyone for loving us so much......

Can't we stop the world just for a minute?

Wow--it really has been forever since I posted. I have been doing really well, just the occassional stunned moment, or something catches me off guard and I lose it, but mostly things have settled down and I am doing o.k......That is until this week, things are really starting to get tough. I am so fortunate to be loved and supported by so many amazing people...that helps. I have read many stories of people who have lost a child whose family and friends think they should "be over it" Nobody in our life is like that--not our family, friends or bosses. I think everyone we know has been impacted and are not over it themselves, this is every parents worst nightmare, right....so anyway, I feel blessed to have so many kind, giving, generous, loving people in my life.

A friend of mine just had an amazing, beautiful little baby girl...she felt guilty talking to me about her and I told her that I don't have any jealousy of other babies. They still bring me the same amount of happiness and joy that they did before we lost Sophia. No one contributed to our tragedy, so no one has anything to feel bad about.

On the advocacy front...not much going on. I did find an article which said that the incidence of congenital asplenia is 1 in 2000....way higher than most of the diseases they test for. This same article also told of two siblings who developed sepsis and were found to be asplenic. They then tested the rest of the family and found that the mom and another child were also asplenic. It really rekindled my curiosity about whether Mike or I might be asplenic.... We decided to move forward with getting blood tests for us and abdominal scans if we can....

Mike wrote this amazing letter to the group savebabies.org that advocates for newborn screening. We got a letter back (which I can't find at the moment) from the head of research saying that we should keep pushing forward with this, the main obstacle seeming to be that the screen can't be done with a filter paper test. Anyway, here is the letter...I will probably be posting much more this week...it is shaping up to be a tough one....

To Whom It May Concern,

My wife and I are very interested in learning more about the Consumer Task Force on Newborn Screening as the recent death of our 16 month old daughter Sophia, in April, from undiagnosed asplenia (and the resulting overwhelming sepsis) has sent earthquakes through our life and family. We are committed to furthering knowledge and understanding, and have been in contact with many doctors, some on a national stage, even state legislature, to see if something can be done to minimize a repeat occurence for someone else's family. My father, Marty Wilcox, was a founder of ultrasound in obstetrics in the 70s, and he asked a simple question after Sophia passed. If someone who suffers from and does not have the means to combat simple bacterial infections due to the lack of a spleen, couldn't much be done to ensure survival if diagnosis can be made early through a simple organ checklist being taken when the mother is already most likely getting ultrasounds done for her unborn baby? Howell-Jolly bodies are indicative of a failed or missing spleen in the blood of such an infant. Can't an additional test be added to the blood draw every infant goes through in their first days of life? Polysplenia is another problem that could be ferreted out with such tests. The treatment is a simple one, antibiotics and parental awareness. Sophia was asymptomatic in most regards, and though her medical file is large for one her age, she didn't have the more severe syndromes associated with asplenia like heterotaxy or Ivemark's Syndrome. There were signs we have found after the fact like breathing issues and a hemivertebrae, but those connections are all the more sorrowful now.

We feel compelled to make her short life and death helpful to others. Please let us know any way we can help, and we will both become familiar with your Web site and efforts.

Thank you,
Michael and Grace Wilcox

The Owl

OK---for those of you who know me pretty well, this is going to be the post that makes you think I have finally lost it. But, an owl has appeared outside our house. He perches on top of the church across the street every night and every morning and hoots away. I have learned from a book that my Mom gave me (and NO it wasn't a Harry Potter book) that owls bring messages. So I have been trying to figure out the message. I mean we have lived here over 5 years and we've never had an owl before....Now, of course, I realize that there are maybe dozens of people that can hear the owl at night, so I am not sure why I am convinced that she has a message for ME or for US.....maybe it is because I want a message from Sophie so bad. Maybe the fact that she is perched atop a church means Sophie is telling us she is in heaven, and it is alright. I've been thinking maybe it is a message from me to lower the stress level and get in shape so I don't subject Annie and Mike to the horror of losing a loved one again.....that's what I'm going to take it as...a message from Sophie telling me to get my shit together.....I guess it could just mean there a a lot of mice in the neighborhood...but what fun is that. Any thoughts? Please don't tell met that the owl is trying to tell me to go into that church...if that is the message I am pretty sure it is for someone else :O)

3 Seconds

I was combing through computer files on one of my always fruitless searches for pictures of Sophie I haven't seen before (or at least since she dies) and I came across this 3 second video of her climbing on Mike.... I know it is only 3 seconds, but it is 3 seconds of seeing her move, or hearing her....it totally made my day...I keep hoping family and friends who have pictures or videos of Sophie will send them, but I haven't asked anyone yet. I guess I should.

So much has happened since I last posted...Annie's blood work on the antibody titers came back and showed she had a very strong immune response to the vaccinations, especially the pneumococcus. Even though Dr. Evil insists that that doesn't tell us anything...it tells us that her immune system is stong...no, it doesn't guarantee us that she is never going to get hit by a bus (which is the crazy thing he kept trying to tell us, that this test wouldn't guarantee us that she would never die...what an imbicline.....) Anyway, that is really good news.

Mike and I have been doing really well since we got back from Mexico, busy, but good. We are preparing for the upcoming "anniversary" if you will...(what is the proper term? death day? ...any thoughts?) We've decided to get a bunch of friends together and do the Cherry Creek Sneak, which is a fun race that happens to be held on April 27, So we'll get out of the house early in the morning and be surrounded all day by friends and family, outside in hopefully nice weather. I think we're going to do Team Sophie T-shirts..and if I can make the time to get the asplenia website up and running by then it might be a step in the awareness direction.

Speaking of which, boy have I dropped the ball there. I feel guilty, like I am not living up to my promise to Sophie, to raise awareness and to stop this happening again. I am having more energy now, so I am planning to take some baby steps forward. I just got tired of the fight for a while, all the research, lettersl stress....I need to find out more about the fliter paper test, to see if there is anyway a filter paper blood sample can be used to screen for aspleina (congenital or functional). If it can, then we have a pretty good chance of adding the condition to the newborn screening program...it will be a haul, but aspleina meets all of the criteria--except that it is so rare, but it is less rare than some of the other diseases they screen for...so maybe.

Last, who woulda thunk Valentine's Day would be so hard, but Mike, Annie and I were sad last night and again today....I guess maybe we could have guessed, because, well Halloween...I did to hold a 15 month old little girl at Annie's preschool yesterday, and let me tell you, it felt amazing...she was just the size my arms remembered Sophie being....which is another weird thing, that's how I will always remember Sophie...15 months...but she would be so much bigger now. Well, the tears are flowing, so it's time to go....

Paranoia May Destroy You

Or at least cause your kid to have to spend thousands on therapy as an adult....Generally the fear that Annie will die randomly in the middle of the night has been contained, but I still do have moments. This afternoon we were driving in the car, just Annie and me and she fell asleep hard, for a long time. After a while I tried waking her up and I couldn't...I was reaching back and grabbing her leg, calling her name and she wouldn't wake up. I pulled the car over on the shoulder, right there on I-25, turned around and shook her and she didn't move---I screamed really loud and then she woke up. That can't be good for her, but she isn't a deep car sleeper and I was so scared. If there is an area that I could use help with this is it. I used to generally have faith that if my kids went to sleep they would wake up...now I don't and I need to get it back. All our lives are going to suck if I constantly worry....Annie might have some sleep disorder as an adult because she has been conditioned by me....I don't want that to happen.

Everytime I read something about a parent that has lost more than one child I get so panicky....OK, I'm going to say it...it is a possibility, right?..it could happen to any one of us. But, I can't live my life in fear that I am going to lose one of the other kids. So, if anyone has any advice on how I might deal with this I would love to hear it. I'm not paralyzed, but I sure would like for the thought to cross my mind less often.

The holidays are making me anxious again...I may have to get reacquainted with my friend Ambien. I have pondered why the holidays would be any harder than any other day that I don't have Sophie in my life...the all suck. But I have concluded that gatherings of people really highlight her absence, gift buying brings to mind the things Sophie won't open this year, the mall reminds that she won't get to sit on Santa's lap (although if last year was any indicator she might not have done that anyway), even the damn snow reminds me that she doesn't get to play in it....Every year I get the girls Christmas PJ's and they open and wear them Christmas Eve...I was shopping for those yesterday and just melted down....no cute cuddly PJ's for Soph-Soph....I honestly don't know how I am going to make it through this....the amazing people in my life I guess....although it is tough to keep leaning on all of you, and I know I should be standing on my own more.....

On another note, my dear friend Jennifer is having surgery on Tuesday...for those of you who are the praying type, please include her this week. She's very scared, but she is a tough, brave, chick and I know she will be o.k.

On the brighter side, we do have a decorated tree up in the house and I have bought exactly one present, so progress is being made..... take a look at the cute little video of Sophie's 1st time in the big bathtub!

Cry me a River

Or rather I have been crying myself a river these past two days. I don't know what is going on, but I really haven't been able to get a grip. As a result, Mike and Annie went to his brothers without me yesterday. I think the quiet time has been good and I am feeling somewhat better today. A big problem for me is that I'm not sure exactly what is making me so sad. Could be the holidays, but T-day was actually fun. There is some other stuff going on with friends that is stressful, so maybe that is contributing, but I am starting to feel bewildered again (Did this really happen? How did this happen? Why did this happen? Have I learned ANYTHING from this experience) I have also been angry the past few days....and damn do I miss our little Sophia Noel. You know, that night, that terrible, awful, haunting night, when we put her to bed for the last time, because that is what the doctor told us to do. She didn't look right, her color wasn't good, she was floppy--why the &(*#$@ didn't I know she was slipping away, why didn't my instinct tell me she needed help right then. I mean for fuck sake, how is your child 15-30 minutes away from their last breath and you have no earthly idea. I would give ANYTHING to have that night back again, to do something different. The docs we talked to after said it would have been too late at that point anyway, but how do we really know, do they just say that to try to allieviate some of our guilt, some of theirs.

I've got to get it together, I know.....Annie and Mike deserve better. I'm in a strange place, a bit of a "poor me" place and I really am feeling like no one can quite understand what I am going through (except, of course, Mike, who is wonderful and amazing, and much better than I at holding everything together). I do know I have so much to be thankful for in this life, it's out there on the periphery....Annie, Mike, Rachel, amazingly loving and supportive family and friends, a nice house, our health, etc.....but all of that doesn't replace the gaping hole where Sophie belongs, does it? I can't dwell in the past, can't stop living just because Sophia died, but how do I stop being so sad..........Mike and Annie come home in about 6 hours, I hope I can figure it out by then!!!!

Destiny is not a matter of chance, but a matter of choice?

First, Anne Marie is fine, thanks to everyone who called to keep me from falling off the hairy edge. Second, I just love this sleepy picture of Sophie when she was just a few months old. I was getting ready for work and she was sound asleep in our bed.

Well, it has finally started....I think. Here is a letter I wrote to my state senator Sue Windels (http://www.suewindels.com/) urging her to get a blood test for Asplenia added to the Colorado Newborn Screening Program

Dear Senator Windels:

I am a constituent writing to ask for your assistance in changing some current legislation regarding newborn screening in Colorado. In April of this year we lost our precious 15-month old daughter, Sophia Noel, to an overwhelming septic infection. She was fine at 7:00 p.m., developed a fever around 9:00 p.m. went to the ER and were sent home, and she was dead by 3:00 a.m. The autopsy concluded that she was born without a spleen and because of this her body was unable to fight off the encapsulated bacteria attacking her system—this despite the four doses of the recommended vaccine against this bacteria.

We were shocked. How is a child born with out an organ and for 15 months nobody knows? In the weeks since her death my husband and I have become avid researchers, seeking to find every bit of information we can on congenital asplenia, whether anyone could have known, and if anything could have been done to save her. What we have found out so far is that asplenia, while rare, is much more common than many of the birth defects and disorders covered in the Colorado Newborn Screening Program. Additionally, had her doctors known she didn’t have a spleen she could have been on prophylactic antibiotics and might have lived a normal, healthy life. Finally, we have learned that a simple blood test or an ultrasound can determine whether or not a child has a functioning spleen.

The relevant portions of the Colorado Revised Statues are:

25-4-1002. Legislative declaration.
Statute text
(1) The general assembly hereby finds and declares that:
(a) State policy regarding newborn screening and genetic counseling and education should be made with full public knowledge, in light of expert opinion, and should be constantly reviewed to consider changing medical knowledge and ensure full public protection;
AND

(c) The board of health shall use the following criteria to determine whether or not to test infants for conditions which are not specifically enumerated in this subsection (1):
(I) The condition for which the test is designed presents a significant danger to the health of the infant or his family and is amenable to treatment;
(II) The incidence of the condition is sufficiently high to warrant screening;
(III) The test meets commonly accepted clinical standards of reliability, as demonstrated through research or use in another state or jurisdiction; and
(IV) The cost-benefit consequences of screening are acceptable within the context of the total newborn screening program.
(2) The executive director of the department of public health and environment shall assess a fee which is sufficient to cover the costs of such testing and to accomplish the other purposes of this part 10. Hospitals shall assess a reasonable fee to be charged the parent or parents of the infant to cover the costs of handling the specimens, the reimbursement of laboratory costs, and the costs of providing other services necessary to implement the purposes of this part 10.
I believe that a test for congenital asplenia meets these criteria. I address each one individually below:

(I) The absence of a spleen is a significant danger to the health of the infant, in the absence of a congenital heart defect, Asplenia is often diagnosed at autopsy. However, if the condition is known the proper precautions can be taken and the child can live a healthy life. An asplenic child who reaches 5 years of age has a greatly reduced risk of succumbing to an overwhelming septic infection (see http://www.emedicine.com/ped/topic150.htm for more details)

(II) The exact incidence is not known, but is estimated somewhere between 1 in 2,000 to 1 in 15,000. Either of these are more common than many of the tests currently in the screening program. For example, Homocystinuria, MSUD, and Isovaleric Acidemia all have an incidence of 1 in 100,000. PKU has an incidence rate of 1 in 25,000 births and Sickle Cell Anemia occurs in approximately 1 in 5,000 births. These statistics are from the March of Dimes website.

(III) Obviously ultrasound at the hospital upon birth is an accepted clinical standard. When both of my daughters were born there was an ultrasound machine in the delivery room. However, there is also a blood test which can detect the condition. There is a certain type of body (Howell Jolly) that will be present if the spleen is not functioning properly.

(IV) Having suffered the loss of our daughter and knowing that she might have been saved if we had only known she didn’t have a spleen, there is no question in our mind that whatever the cost it would have been worth it. According to the CDC (http://www.cdc.gov/nchs/data/nvsr/nvsr54/nvsr54_20.pdf) there were 69,804 live births in Colorado in 2005. Assuming an incidence rate of 1 in 15,000, nearly 5 asplenic children could potentially be identified each year. This is more than are diagnosed with many of the other diseases for which we currently test. Identifying these children doesn’t just ensure healthy development, but can save lives. Our experience with Children’s Hospital was that the blood test cost $75.00. I can’t put a cost benefit on an infants life, but Sophie was certainly worth more than $75.00

Much of the academic research available in respected medical journals urges that more awareness of this condition can save lives. Physicians are busy, and as ours told us trained to look for quarter-horses, not zebras. In the time since Sophia’s death several of our friends have talked to their pediatricians about Asplenia and were all assured there was nothing to worry about. This without a blood test, without the physician even bothering to search Google or Pubmed. Our 2 year old niece spiked a sudden fever of 106 in the days after Sophia’s death and the ER physician wouldn’t even consent to a blood test. (Thankfully she was o.k.) My point here being that doctors are not going to look for this, the medical system is set up to let babies like Sophia die. The general attitude seems to be that some children are expendable. But if it were your child, I’m sure you would do anything to save his or her life. Without legislation, or a change in the program at CDPHE, doctors will not look for this condition.

As one of your constituents, who voted for you, and as a mother, I am asking you to pursue a change in policy or legislation to test for this condition. At the very least parents should be given the information and the option to pay for a confirming blood test or ultrasound should they choose. Many parents are paying thousands of dollars to bank their parents cord blood for a statistically unlikely event. Surely many of them would also be willing to pay $75 to save their child’s life. I don’t remember what the specific test was, but I know when Sophia was born her doctor recommended a test that would cost us an additional amount (somewhere around $25) and we paid it. If I can be the catalyst for just one parent to find out before it is too late that their child is asplenic, Sophie’s death will have some meaning for me.

I am willing and able to talk more to you, via email, in person or on the phone. I have volumes of articles from medical journals I am willing to share. I appreciate your help, your public service and all you do for Colorado.

So I sent that to her today. I might send it to the Governor too. I am really hoping to take this all the way and to get that test added, or at least made available. I'm a little afraid that if the fight is too hard I might run out of steam later (those of you who know me well might be nodding your heads) but since it isn't a constant fight and with everybody's support (especially Mike) I think I can do it. A special thanks to Nancy for putting the idea in my head in the first place.

Many of you have asked if there is anything you can do....you could alter the letter and send it to Senator Windels, or to your representatives in the State House (http://www.vote-smart.org/index.htm) and I might just ask folks to do that if I don't hear something back soon.....I love you all so much, I couldn't have made it this far without you......

It had to happen sometime....why this weekend?

Anne Marie got her first fever this weekend, well not her first, but her first since Sophie died. Of couse it had to be the weekend that Mike is out of town. She got up to 102.7, but Renee (my sister) came over and kept me sane. She's the only reason I got any sleep last night. She's had fevers before, of course, but I am nervous. She seems to be doing better now as she is fighting me really hard about going to bed...it's a good sign so I am trying not to be too irritated. The folks on the list serve seem to think that having two spleens means she has polysplenia, the diagnosis was "small accessory spleen", so I'm not sure what, if anything the difference is. Good question for her doctor.

We are still waiting on getting to meet with the ER doctors. We were gone, then they were, so maybe the first week in August. I have been writing down my questions and reviewing her medical records so I can make sure I don't leave any questions unanswered there. We still need to decide what to do about talking to the pulmonologist and the orthopedic doctor, we want to make sure they know that there can be a connection.

I'm still doing pretty good....thanks everyone for so much support...

Good days and bad.....

Had a very weird moment yesterday where I had been fine all day and then just lost it, sobbing in my office. I decided to call Mike and when he answered the phone he was crying too...I wonder what happened to us both at that same moment....strange. Some days I am fine and some I don't know if I can stand it...never seeing her again, our little beattle bug....

Kristin's brother Evan has gotten us some amazing contacts and has written a letter to the former director of the National Center for Birth Defects and Developmental Disabilities http://www.cdc.gov/ncbddd/ asking if he could provide any more information about asplenia for us.....he also gave us the numbers and names for some local experts. The director of the state program here in Colorado has called me, her husband died unexpectedly in an accident recently, I felt so heartbroken for her. When she gets back into the office whe is going to get some information for us.

It may seem obsessive to anyone who hasn't been through this, I really don't spend all my days and nights thinking about the ER situation and asplenia, but I also have questions that I need answered, questions that I am hoping can shed some light on this mystery, can help us help doctors help patients, can prevent even one family (preferably more) from having to have to endure this heartbreaking, wrenching pain....

I also joined an online support group for Asplenia/Herotaxy/Ivemark's Although so far it hasn't been too helpful. At this point it seems like a group of people who have become good friends and don't talk too much about the condition or associated loss, but rather about their friendship, and everyone has ignore my posts (poor me) but at least I have tried.

Enjoy the picture from last Halloween....she was the most adorable little bat, but of course hated the hat

Life Returns to.....Normal?

Will life ever be normal again? I can't imagine that it will, we did go on vacation last week and it was nice to get away, very relaxing. Right before we left we got a call from the director at the ER where Sophie was seen the night she died....they are willing to meet with us to talk, which is helpful. We are trying to schedule that now. She answered some of my questions like:

Why didn't they take her blood pressure? Apparently they don't take it in kids that young, they don't find it to be useful, in her case it seems like it would have been one of the few things that could have saved her, surely her blood pressure was dropping by then, only a few hours before she died? She didn't answer my other question about why they didn't take blood, I still struggle with trying to understand how an asplenic child EVER survives a sepsis infection, because what would prompt the doctors to ever check for it...I will want to ask about it for sure. She told me that she didn't think that even if they had for some reason started IV antibiotics right then they could have saved her...I find that somewhat hard to swallow, when we got to the ER she had a fever for 2 hours tops......if she wasn't sick enough for them to register something was seriously wrong.

Anyway, I am happy to have a chance to meet with them, although I know it will be very hard, at least we don't have to sue them just to get some answers. And I am sure they must have cleared it with their legal department who must feel that they did everything right, so that gives me some peace too.

In general, 11 weeks from the single most horrible day of my life, I am less anxious, sad but not as much, and maybe moving toward acceptance, I don't know......

You want answers????

Well, we finally got the answers on Anne Marie's test, and her two spleens appear to be working fine, so finally I don't have to go in every night and make sure she's breathing....and the morning anxiety attacks have lessened. The hematologist at Children's hospital still wants to do one more test to confirm that the spleen(s) are not working overtime, but they said they have no reason to suspect it, so we are not too worried at this point. Breathing a little easier on that front helps.

We are still questioning the genetic component of it all, but in general the doctors don't seem to think there is a connection...Mike and I find it strange that of our two biological children (Rachel was adopted by Mike when he married her his ex--her Mom) one didn't have a spleen and the other had two....not really sure where to go with that, but we will probably keep hunting in the future.

I tried not taking Ambien the other night--what a disaster--at 4:00 a.m. we were basically all up (thanks to me) and Mike and I had a long conversation about what might be going on. He astutely pointed out that although I keep claiming to want to go to therapy, I haven't taken any steps to that end. I think he is mostly right, but I am also giving some credit to the fact that I do not seem to be able to make even the simplest decisions right now. Anyway, we have an appointment for tomorrow.....

Things are pretty relaxed at home right now, I really miss Sophie so much..I hate that our mornings and evenings are quieter, less rushed....I'd give anything for her to be pestering me for dinner, bath and bed. So far the hope that his blog would lead to someone else who lost a child to Asplenia or some researcher who knows something hasn't worked, but I'll keep it up because it helps me....

Frustration so bad it makes you cry

It's been such a rough week. We are still waiting on Anne Marie's test results to make sure her spleen and liver are functioning normally...it has been almost two weeks since the first test and a weeks since the other two--results were supposed to be back in 1-3 days, so we are very stressed out. It might bode well that we haven't heard, assuming that bad news would travel faster, but we're not always thinking rationally right now and we need some peace of mind...losing a child makes you extra paranoid about the other ones, at least in the immediate aftermath.

Also frustrating is the lack of information about anatomic (congential) asplenia...oh there's all sorts of information out there about how to prevent sickness in death in a child that has anatomic asplenia...but HOW THE HELL IS ONE SUPPOSED TO FIND OUT IF THERE CHILD DOESNT HAVE A SPLEEN??????? There's several easy tests, ultrasound, blood smears that aren't all that expensive--but apparently the "cost-benefit" doesn't justify the $71 blood smear when they are infants, or the cost of an "organ check" ultra sound....does that seem right? I mean insurance pays for Viagra alot of times for *&%@*$ sake and lots of other things that might be important...but as important as a child's life? And anyone with the attitude that it wouldn't be worth saving one or two babies a year isn't a parent who lost their precious, amazing, sweet wonderful little girl way too early. Even if the incidence is .06% (6 tenths of 1 percent) that would be about 2,400 babies in the US alone who wouldn't die each year---2400....mon dieu. At 4 million US births for year, guessing $200 per screening it would be $8 million...a mere $3,000 per life saved--if I ever get that money I will start a foundation in Sophie's memory that will help children get screened for Asplenia at birth.

I guess I just feel angry today...maybe tomorrow will be better....

5 Weeks Tomorrow

It will be 5 weeks tomorrow since the death of our precious 15 month old daughter Sophia Noel. She died suddenly from pneumonoccal sepsis as a result of congenital asplenia, which means she was born without a functional spleen.

There are many reasons I decided to start this blog, one as a personal journal as we try to deal with this and resume a normal life (whatever that means), also in hopes that someone with some knowledge of asplenia will will reach out to us with information, and finally as a place where other parents who have been through this horrible nightmare can find a place to connect.

Sophie died on Friday morning, April 27th, 2007. I won't go into the details, but it was horrific, she had a wonderful day at daycare on the 26th and was fine when we put her to bed at about 7:00, she awoke crying and vomiting with a fever of 105 about 9:15 p.m. and we took her to the emergency room where they did a chest x-ray to check for pneumonia and a urine test to make sure it wasn't a kidney infection. They gave her some Tylenol and sent us home. I last saw her about 2:30 a.m. and in the morning she was gone.

We were in total shock. We found out the next day that she did not have a spleen. Apparently most children who are born with out a spleen (congenital asplenia) also have a congenital heart defect or some other type of syndrome that would lead the doctors to check for a spleen, but Sophie was completely healthy in that regard. To be honest I had no real idea of the purpose of the spleen before this happened and it didn't make sense to me at first because I know people have their spleens out all the time. But apparently in small children it serves a very important function and without one they are unable to fight off certain types of bacterial infections, especially encapsulated bacteria (http://www.answers.com/topic/asplenia) There is so much they can do to prevent overwhelming sepsis if they know a child doesn't have a spleen, but it is not common for doctors to check and without knowing she had no chance.

Most of the information available on the Internet is academic in nature, and although we and our families are fairly well educated, it is tough to get a sense of how common this is. I've heard 1 in 15,000 children and if this is the case I would advocate strongly for a post birth check of all children through a simple blood test. The State of Colorado requires several blood tests for syndromes less common than this. At the very least I hope to make more parents aware of the condition so they can ask or even demand the blood test. Insurance likely won't pay because the risk is so small, but given the option of saving your child's life, many parents would be willing to shell out the $75 for the test, I would imagine. Sophia had 4 doses of the Pneumococcus vaccine as recommended and it didn't make a difference for her.

We are also trying hard to get a sense of the genetic implications, and here there is really no information. We have found out through ultrasound that our three-year old has two spleens. Although we have been assured this is a "normal variant" with 17% of the population apparently lugging around an additional spleen, we are still pretty nervous and awaiting the results of some blood work to confirm that she is safe. What are the chances that both our children would have spleen abnormalities, if it is genetic how can we find out?, what does it mean for our other child's future?

I hope to post every day and let folks know what we are finding out and how we are doing.