Manda Meow

World Prematurity Day // Bloggers Unite

2011-11-17T06:13:00.001-05:00

World Prematurity Day // Bloggers Unite

In years past on November 17th I have attempted to recreate the horror that was our lives as we supported Amanda through the NICU and the challenges we faced once she came home. This year, instead of going back there, I thought we should have a "Where are they now?" sort of update. Everyone likes those don't they?

To Recap: Amanda was born at 24-weeks via spontaneous vaginal birth. She was on a ventilator for about a month, had heart surgery, suffered a collapsed lung and a bowel obstruction before coming home from the hospital the week of her original due date on an apnea monitor. It was the longest three months of my life. FEAR ruled every waking and sleeping moment. At the ripe old age of two she was diagnosed with hepatoblastoma, a tumor in her liver. We participated in a study investigating whether some of the treatments she received in the NICU may have increased her likelihood of contracting this particular cancer. Was it due to her low birth weight or was it because she was given oxygen? We don't really know.

Skipping Ahead: Last spring it was suggested that Amanda's toe walking was more than just a delayed maturity of physical skill. Many kids will walk on their toes as toddlers and then eventually settle down into the more stable flat footed gait. At five, our girl was still up on those toes more often than not. She could walk with "flat feet" if we asked her to, but preferred to be up rather than down. We went to see a Neorologist who gave us the diagnosis of Spastic Diplegia, a form of Cerebral Palsy which effects the legs in this manner. She just didn't have a good range of motion in the area of dorsiflexion. Oh, and she also has ADHD-C which means she is both attention deficient AND hyperactive (the C stands for combined).

Over the summer we started preparing for her to start Young-5s Kindergarten. (This was a source of stress on us as parents considering as she grows up she will be older than her classmates by a year or possibly two. Not so bad now, but wait until puberty hits!) We started her on medication for the ADHD. We chose a long acting 12-hour pill so she would not need to re-dose during the day. Honestly, we've been through so much with her already we tend to be a wee bit over protective. Shocking, yes, I know. But, we just didn't trust the school or even our beloved daycare to remember every single day at a given time to provide the right meds in the right amounts. No offense to anyone but even if one staff member does it everyday, what if they are sick one day or they have a staffing change? No thanks, we'll just take care of this at home in the morning and she's good to go. (Do you see the level of over-thinking that has to go with every decision?) The good news is, the meds seem to be working. We increased the dose once school started and her teacher said she's doing very well in class and is able to attend and follow directions fairly well. She is not out of the norm for the other kids in her class.

She also started physical and occupational therapy at a local rehabilitation hospital. The physical therapy was to stretch out her legs so that she would easily and naturally put her heels down when she walked. It has been decided that while she does have tightness there (which later we found was not limited to her heels but rather tightness in the fascia (connective tissue between skin, muscles, organs, etc.) all the way up to her neck. By doing a myofascial release massage the therapist was able to get the full range of motion in her ankles. She gave us homework to do stretches twice a day and we ordered orthotic shoe inserts to prevent her from going up on her toes. The inserts in theory will retrain her brain and body how to walk so she doesn't want to go up on her toes anymore. She fought and fought the stretches to the point where the therapist had to teach me how to manually stretch her myself. Twice a day I need to coax and bribe and plea to get her to let me stretch those legs. It doesn't hurt her, it just *feels* better when she points her toes rather than flexes them.

This leads to our next topic, Sensory Processing Disorder. She is sensory seeking, she wants to FEEL the pull of her muscles as she hangs from the trapeze on her playset, the wind in her face and hair as she swings or goes down the slide, the tightness of her calves as she walks on her toes. Hey, what was that last thing? Yeah. Everyone pretty much agrees while her ankles are a bit tight and the stretching will help with that, she's up there teetering around due to her sensory integration issues. She just prefers to be on he toes. *slaps palm to forehead* We knew about the SPD when she started occupational therapy and were hoping they could work in as much sensory therapy as possible given the fact that such things are not covered by insurance...anywhere. It is still a "theory" made up by occupational therapists trying to explain certain behaviors which the medical community, or at least the insurance companies, have yet to recognize. There are three very good private therapy offices in our area where we could go and feel confident she was getting the appropriate sensory therapy for her needs, yet it will be 100% out of pocket so we started with the hospital since we had the referral from the doctor who diagnosed the Cerebral Palsy. We thought we would see just how far the insurance would let us go. Just far enough to start seeing a slight improvement and then drop therapy for a month before going back to the doctor for a re-assessment which will be after the first of the year so our deductible will zero out again. *ARGH!*

Oh yes, and she also went through an extensive neuro-psych evaluation which did nothing to make us feel better about our situation. Amanda is a sweet kid, very charming and fun loving. She is also a bit delayed in the processing and returning of information. Remember how Forrest Gump was just 5 little points away from attending public school and Missuz Gump had to ...persuade, shall we say. the principal to let him go to the mainstream class? Yeah, I see I may need to do some persuading in my future.

Which leads me to my next point, ADVOCACY! As parents we have spent Amanda's whole life advocating for her best interest. The staff in the NICU would put off providing this or that because "she hasn't declared herself yet" to which we would respond, "We are declaring FOR her". During her cancer treatments when they thought she needed iron and we couldn't get her to take it orally (Seriously, have you tasted that stuff? Who in their right mind would take it willingly?) we told them they needed to find a new way to get it into her because force feeding her made her throw up (the only time in 9 months of chemo she was ever sick was when we forced meds on her.)We have been fighting for our daughter since before she was born. We are used to fighting for her. Not in a Momma-Bear don't-threaten-my-cub way, but rather in a Missuz Gump way, my child will have the best opportunities I can provide for her because it is not her fault she has the issues she has!

Finally, the fighting. Fighting for her, fighting for her, fighting for her. We are now fighting HER. Late summer brought about the perfect storm of our house in a bit of disarray as we had guests for a couple of weeks, she started PT and OT, she started meds, she started school and switched to a new class at the daycare. HOLY CRAP that is a lot to load on a sensitive kid all at once. She started "declaring" herself through tantrums. Not just stomping her foot on the floor, though she does that too, but violently kicking us, the doors, the walls, hitting, scratching, spitting, screaming, crying tantrums that literally shake the house and can be heard from the street out front. "Luckily" she reserves these for home, not once has she done this at school and only occasionally at Grammy's house. She is declaring she needs help and we as her parents need to provide it. BUT HOLY HELL I DON'T KNOW WHAT SHE WANTS! She needs more sleep as she has trouble sleeping through the night and with the new school schedule cannot get a nap anymore but still. *Ack!*

Today she will meet our newest specialist...the behavioral therapist! (I hear horns playing and a glowing light shining from behind this woman's smiling face.) She has to be our savior because, DAMN, we cannot keep living this way. I think the sleep, sensory integration therapy (wherever that ends up coming from in the long run) and continued support for the ADHD and rigid schedule at home will help her calm down and return to the sweet loving dramatic funny girl she really is. Right now I have Dr. Jekyll and Mr. Hyde without the need for that pesky potion.

What does all of this have to do with World Prematurity Day? Everything. I'm not saying that people who have full-term babies don't ever have to deal with these issues but time after time when we meet new therapists, new doctors, new specialists and we describe her developmental skills, quirks or challenges they nod their heads and say, "Yep, that's a preemie thing." This preemie thing will follow us the rest of Amanda's life. It is truly the unseen birth defect. Cerebral Palsy, ADHD, Sensory Processing Disorder and Learning Disabilities are all MORE COMMON in kids born prematurely. The March of Dimes has worked tirelessly to provide the treatments that help more and more babies survive, however, these kids will more than likely require more services throughout their lives than their full-term counterparts. The March of Dimes has shifted their focus now to PREVENTION. If fewer babies are born premature, we can help resolve this issue. The way to prevent prematurity is to support expectant mothers even before they conceive. Help the moms, help the babies. Fairly simple. If I had been properly educated on the signs and symptoms of premature labor maybe we could have stopped it before she was born, or at least bought enough time to get the steroids for her lungs.

They say Amanda is a "Former Micro-Preemie" but I think that is something that will be with her all her days.

Seriously?

2011-05-19T19:16:00.000-04:00

Spiderman ain't got nuthin on my kid!

2011-04-16T12:19:00.002-04:00

Mere :o)

Hot Shot!

2011-04-10T19:36:00.000-04:00

Meow (in backpack) going for a ride!

2011-04-07T18:24:00.001-04:00

Haircut 2011

2011-03-20T13:42:00.001-04:00

Girlie yet short enough to stay out of her food at meal times. :o)

First Bubble Stuff of the Year!

2011-03-19T19:06:00.000-04:00

Amanda in her "Wonder Pets" flyboat (box)

2011-03-05T19:17:00.000-05:00

Princess chair cupholder full of race cars. That's my girl!

2011-02-20T17:02:00.000-05:00

Monsters Inc watched from the hall. Too scary to actually be in the room.

2011-02-19T10:02:00.001-05:00

Happy Birthday Sweet Girl

2011-02-17T05:26:00.005-05:00

You've come a L-O-N-G way baby!
Let's hope the next five years are nice and boring.

2011

2010

2009 - In REMISSION but still in treatment.

2008 - Look how fluffy Meow was!

2007

2006 - Born 16 weeks early.

Seriously

2011-02-04T07:44:00.002-05:00

How cute is my kid when shes learning math?

Digging Out 2011

2011-02-02T07:05:00.001-05:00

Knee deep drifting up to around 4-foot. As high as Maggie's back in most places. Amanda wanted to make Snow Angels but we told her it is too deep. :oP

Gymnastics!

2011-01-31T18:34:00.001-05:00

Gross motor and sensory-seeking fulfillment. Long waits between when it is "her turn" punctuated by frequent escapes to run the length of the gym at full speed!

"Fishy Face" = Nebulizer + Charlie Brown Valentine's DVD. :oP

2011-01-30T20:05:00.001-05:00

Shopping: Manda said "I'm covered in vegetables!"

2011-01-29T12:27:00.000-05:00

Radiator Spring's First Bowling Alley!

2011-01-28T19:08:00.000-05:00

Post Fabulous Fun (while sick) Weekend Nap

2011-01-23T16:57:00.001-05:00

Oh Boy!

2011-01-17T13:03:00.001-05:00

I said I would do anything to help pay back Make-A-Wish and help pay it forward for other Wish Kids and Wish Families. I am now putting my feet where my mouth is. (As opposed to putting my foot in my mouth.) I have officially signed up for the Fifth Third River Bank Run 5K (not so presumptuous as to go for the whole marathon my first time out) and will be raising money for Make-A-Wish every step of the way!

Feel free to lend support in any way that you can, a donation, a high-five or possibly offer to carry me across the finish-line. If this goes well, I'll try for the 10K next year. (Did I just put that in writing?)

http://www.active.com/donate/makeawish2011/meredithswishrun

In all honesty, I have been wanting to start running for a while now. Once I found out that Make-A-Wish could benefit from my completely insane thought of joining the River Bank Run...and knowing I could start with an itty-bitty 5K race, I decided it was time. So, off I go, one step at a time.

Mere :0)

marsoddy@gmail.com

Packing her rocket ship!

2011-01-15T18:10:00.000-05:00

Wearing her Wish Heroes hat, playing out her "Math Adventure to the Moon" video from her new Leapster Explorer. She keeps yelling out, "Oh no! The fuel gauge is empty! That's weird, when we left it was on full!" Hee Hee! I hope she can apply this amazing memory to her schoolwork in the future.

Relatively Speaking

2011-01-04T18:44:00.001-05:00

Amanda is 8 Crayola markers tall!

The Girl Who Lived

2010-11-16T11:42:00.005-05:00

November is Prematurity Awareness Month. As part of that cause I am
participating in the Bloggers Unite Fight for Preemies event to raise
awareness and hopefully support for our dear friends a the March of Dimes.

*************************************************************
She may not have been facing down an unforgivable curse from He Who Must Not Be Named, but my daughter is a survivor in the truest sense of the word. She is either very lucky, or unlucky. I guess it depends how you look at it. Almost five years into this journey of parenthood we are still trying to figure out on which side of Karma we seem to have landed. I suppose our daughter could be seen as a one-trick-pony, but hey, what a trick!

Amanda was born at 24 weeks + 3 days gestation. We were surprised by the premature labor. The staff at the hospital was also surprised by the premature labor! I was hooked up to the monitors which were unable to register any contractions. We suspected a urinary tract infection, which can be quite common during pregnancy though I had never had one before. My water broke, they called the NICU and put them on alert. I was given a steroid shot to mature the baby's lungs before delivery and I was whisked off to a labor and delivery room. Things settled down for 5 minutes. Long enough for all of us to take a deep breath and start thinking of a game plan when BOOM, here she came. They never had a chance to check to see if I was dilated. It was most definitely a "natural birth" and yet the most surreal experience of my life. It took around 20 minutes or so from start to end. (Not enough time for that steroid shot to be effective.)

Amanda was 1-pound 15-ounces and 12-3/4-inches long at birth. This is a large size for a 24-weeker! Her skin was translucent, she was covered in bruises and her eyes were sealed shut. She could not breathe on her own. I saw a quick flash of a red face before she was taken to the NICU and Tim and I were left in the delivery room alone wondering what in the world had just happened. We were traumatized and shaken and feeling very vulnerable and lonely. It didn't seem real at all. I said, "We have a daughter." I thought that if I said it out loud that would make it seem more real, but it didn't. We held hands and wiped tears from our eyes and just waited for someone to come explain everything. No one came.

The next several hours I spent alone in my hospital room on the maternity ward. I have never felt so alone. My room number was 911. I did not find this humorous at all. A Karmic joke perhaps? Tim went home to take the dog out , pack a bag for me and make some phone calls. I called my office to let them know I would not be back in that afternoon as planned, and I would need to take the next week off. "Oh yeah, by the way, I had the baby." Funny thing this having a baby when you weren't planning on it, it tends to change your plans. The nurse brought me a couple of Polaroid pictures of Amanda. The Neonatologist came to visit me and told me the baby was alive, if she continued to live through the first 24 hours that would be a major milestone. I waited for Tim to get back before I went down to see her. I couldn't walk yet on my own anyway.

That first trip down to the NICU was really scary. We learned how to scrub in, learned the rules and protocol and then had to be directed to her bed. I was looking at a room full of isolettes and I didn't know which one was mine. They said this baby, in this bed was mine, but how did I know that for sure? I just went with it. I should love this one because they said it was mine. The bonding was a long time in the making. I wanted to love her and I just kept working at it until it really happened.

We had planned on my taking a maternity leave and then returning to my full time job once the baby was born. Since we knew Amanda would be in the hospital for a good 3 months (if we were lucky enough that she survived that long) we would need to make some plans. We couldn't afford for me to just stop working and spend all day every day at the hospital. Working for a small company (too small to qualify for FMLA), that wouldn't work for them either. So, after taking a week off I went back to work on a reduced schedule and started a new routine. Visit the hospital in the morning, go to work, home for dinner with Tim then the two of us went back to the hospital before bed. Get up the next morning and do it all over again. I was getting up close and personal with the breast pump, freezing the milk, looking forward to the day when they would actually start feeding her instead of providing her nutrition through an IV. The entire three and a half months Amanda spent in the NICU I listened to "Harry Potter and the Chamber of Secrets" in my car. I had it on repeat and listened over and over and over without really absorbing what was being said. I felt comforted by Hogwarts and the wonderful rich voice of Jim Dale. It was my only escape.

I slept at night because I was exhausted, yet every time I closed my eyes I was right back in the delivery room feeling every ounce of anxiety and terror that I did in the moment of birth. I went to bed hoping the phone wouldn't ring in the middle of the night. It was a horrible existence. I learned what Post Traumatic Stress felt like. I learned that life as a working mother of a baby in the NICU meant that whether I was at the hospital, home or work I felt like I should have been somewhere else. I felt like I was constantly letting someone down. I felt like a failure in every aspect of my life.

Routine was what saved us. We found a rhythm and stride and just kept it up as best we could. Amanda's health would improve and then backslide. There were times we laughed and joked with the nurses and there were times when she was labeled "low stim" which meant we were to whisper and keep the lights low. We could look but not touch. We learned how to change diapers around cords and tubes and wires. Some to help her breathe, some to provide nutrition and some to let us know whether her heart was still pumping or not. We watched the numbers on the monitor more than we looked at her. The numbers told us she was still alive.

We saw other babies come and go, some went home with their families, others did not. I walked in one morning and headed to the back corner, "our corner" which turned out to be where they kept the sickest babies though no one told us this, only to find an empty bed. My heart stopped. Where was my baby? They had moved her to the "feeder and grower" area by the nurse's station. Later that night she was moved back to our corner with a bowel obstruction. The nurse had to bag her to keep her breathing. I felt as if I had been punched in the gut. That is what they call the "roller coaster" of the NICU. On the same day you get great news you can free fall at 100mph and wind up at your lowest point. You never know what will happen next. Milestones and setbacks happen at the same time leaving you reeling and not knowing whether to be happy or sad.

I left her in the hospital to attend my baby shower on April Fool's Day. (Another Karmic joke or just a convenient day?) I arrived late at the hospital one Saturday after walking in the March-of-Dimes WalkAmerica (now March for Babies). (We raised over $2400 that first time out. Oddly, since I no longer have a baby in the NICU the fundraising has become more difficult.) I spent the whole day at the hospital on Mother's Day just to be close to the one person in the world who made me qualify as a mother after so many infertile years of feeling pain and loss on that day.

Amanda spent 105 days in the NICU. She came home three days before her due date. She should have been born on 6/6/06. I think that date plays a part in our Karma flip-flops too. How could it not?

But she lived.

Just when we thought it was safe to consider ourselves parents of a normal healthy toddler, Amanda was diagnosed with Hepatoblastoma. She had stage IV liver cancer which had already metastasized in her lungs. It is quite possible that the cancer was connected to her prematurity, either due to immature liver tissue, her low birth-weight or even one or more of the treatments she received in the NICU. Karma (good or bad) found us once again as she pushed on through chemotherapy and a tumor/liver resection surgery. We found a routine again as a family with two working parents and a child in the hospital. I firmly believe that our experience from the NICU gave us an advantage over the other families in the pediatric oncology ward. We knew how to listen to the doctors and then ask the nurses for more detailed user-friendly explanations. We knew how to advocate for our daughter. We had fought for her life before, the other families were all new at it. While we felt it was highly unfair to be facing her mortality again, in a twisted way, it gave us an edge to have been-there-done that.

She suffered, we suffered, but again, she lived.

The research that has been done by the March of Dimes has made it possible for "lucky" preemies like Amanda to survive. They can save more and more babies these days. So, what to focus on now? Preventing the premature births in the first place. I wish I had recognized the signs of premature labor. If I had gotten to the hospital sooner, maybe they could have stalled my labor, at least long enough for those steroids to help her lungs. Maybe she could have cooked a little longer. Maybe we would have had a slower, less traumatic birth experience. Maybe she wouldn't have had to suffer as much as she did.

I believe that every preemie in the NICU must be Buddhist on some level for "all of life is suffering". They must suffer in order to live. Not knowing the full reason(s) behind the premature birth and not getting a reliable answer about how any future pregnancies might turn out and not intending to put another child through the torment of the NICU we decided that Amanda will be our only biological child. We heard of families who revisited the NICU with subsequent babies and gave wonderful glowing updates to the staff of how the older former-preemie siblings were doing. To me, this is child abuse at its most basic level. We felt we did not have a choice about whether Amanda had to suffer through that or not. If we gambled with another pregnancy and wound up back in the NICU we would have inflicted that pain on that child intentionally for our own selfish purposes. No. NO! It is just wrong. I had surgery on September 11, 2009 (there is that 911 number again) to have my tubes tied and an endometrial ablation to treat symptoms of my endometriosis. We have not completely ruled out adoption but as time goes by it is looking more and more like Amanda will be an only child. This is another huge blow, as we had always intended on having two children. The impact of this one premature birth is shocking as its effects are revealed in all aspects of our lives.

I will continue to support the March of Dimes in hopes that other babies, other families, will not have to suffer the way that we did. I will write for BloggersUnite as long as I can do it without hurting myself more in the process. (It's not easy.) This many years later, the trauma is still very real. The effects will follow us the rest of our lives both in her developmental levels which are SO CLOSE yet not quite up to age level and our own social/emotional ties. But we are the lucky ones. We brought our baby home. She can see. She can hear. Her heart defect healed itself. Her congenital eye disorder (Duane's Retraction Syndrome) is not so bad that it requires surgery and her vision is good. We are all so very lucky. We ended up on the good side of Karma in the end. (Please, please, please let this be the end!)

Amanda is beautiful and charming and smart and funny. I wish she could be known most for those things which make her special. Instead, I fear, she will always be known as The Girl Who Lived.

Just Got the Call

2010-11-11T11:23:00.002-05:00

The Audiogram came back fine.

The Echocardiogram "looks great!"

The CT Scan was all clear.

The AFP (cancer marker in the blood) was 2.2.
(<8= negative).

We are still in REMISSION people!

Woo Hoo!

We will do blood work again in 6 months along with a chest X-Ray. The Audiogram we will check again next year and the Echo will not need to be done for two years. *tap-tap-tappity-tap-tap* (That is the sound of my heart and feet doing the happy dance.)

Such great news after a REALLY hard week getting all of those tests completed. Amanda was terrified by going back to the clinic, more specifically by the CT scans, and the fear is showing up in her behaviors. She is grasping for some sort of control wherever she can get it. I am hoping she is feeling better soon. This morning was a rough go. She can be head-strong, overly emotional and uncooperative on the best of days, so to have all of those things amplified is just so hard. I know why she is acting this way, but it does not change the fact that I need her to put pants on before we can go to school. *sigh*

We are heading to Sesame Street Live: Elmo's Healthy Heroes this weekend. That should be a good time.

AND, I was just contacted this morning by Make-A-Wish about the Macy's Santa Clause (the actual Macy's Thanksgiving Day Parade Santa) stopping by Woodland Mall on his bus tour and the Wish Kids get to be first in line to meet Santa during his visit!

AND, speaking of Make-A-Wish, they put out a calendar every year highlighting wish kids, staff, and philanthropists, etc. who are important to their organization. For their 2011 calendar, guess who got the spot of Miss September...our very own Amanda. It is just the cutest thing ever. They chose a picture of her kissing Elmo during their meeting in 2009. This is the national calendar, so all over the country in the month of September people will be seeing our super star with her favorite little red monster.

All kinds of goodness to buoy my spirits while we battle the emotional/behavioral backlash from the testing this week. I am literally shaking, not sure if it is from relief, fried nerves or this morning's ingestion of caffeine. Looking forward to smoothing things out over the next week and returning to "normal"

Manda getting a "Maggie Snuggle"

2010-11-10T07:03:00.001-05:00

Hanging out before heading to the hospital for this morning's CT scan.

Not the Good Witch but not Wicked either, Presenting The Cute While Frustrating Witch of the Mid-West!

2010-10-29T07:28:00.001-04:00

Pumpkin Patch Kid. She chose a mini pumpkin for Meow. :O)

2010-10-23T16:24:00.001-04:00

Cold Stone Creamery Make-A-Wish Ice Cream Social!

2010-09-30T20:43:00.001-04:00

Funny Kid

2010-09-30T11:56:00.001-04:00

I must say "Funny Kid" a bazillion times a week. Last night was a classic. Having trouble falling asleep she yelled out to me down the hall.

"Hey Mommy!"

"Yes, Sweetie" (for the hundredth time)

"I think I'm too close to the edge [of the bed]"

"Why don't you try scootching over towards the middle."

"Oh...Ok."

Tim and I just looked at each other to ensure we had both just witnessed the same conversation.

Manda with her new "Hula-Loop"

2010-09-04T21:30:00.001-04:00

WAM 300: 2010

2010-07-22T13:17:00.000-04:00

The bikes are off and running (riding) again! Amanda is a wish hero this year so she has been matched with the team Carbon & Tux. We will great our rider at the finish line on Sunday in Chelsea after he has logged 300 miles on his bike in the next three days. This year they have added a feature on the website so that we can send messages to the riders while they are on the ride! I pulled up the page to send a few thoughts to the riders and who did I see but Amanda and Elmo! How cool is that? My kid is a serious rock star. Check it out here: WAM live messages . Having just returned from the third and final leg of our Make-A-Wish journey (couldn’t fit the trip in last summer) we are more grateful than ever for the generosity of the donors who make these wishes possible. Help us support Make-A-Wish and these riders in particular by leaving them a message or donating to Amanda’s rider here Carbon & Tux Team Page .

I promise to post specifically about our trip to Sesame Place as soon as I have a spare moment to get it typed up!

Health Note: Amanda saw the eye doctor this week who said her eyes are tracking together and have equal vision, still no need for glasses. Woo Hoo! She also had a physical and blood work done at the clinic and the oncologist said she is very pleased to see Amanda so healthy and still very much in remission. We’ll do another scan in the fall with her hearing test (yearly) and an echocardiogram (every 2 years). HUGE sigh of relief on both parts. Now we can relax and enjoy the rest of the summer in which we will attempt to go camping for the first time.

Mere :0)

HAPPY 4TH OF JULY!

2010-07-04T20:35:00.001-04:00

Sticks don't taste good. :-P

2010-06-25T20:42:00.000-04:00

Too Hot + No Nap = Fell Asleep on the Floor. Poor Girl.

2010-06-12T17:43:00.001-04:00

Slip and Slide! Cool fun on a hot day in Cleveland.

2010-06-12T12:43:00.001-04:00

Wish it Forward

2010-06-07T15:49:00.003-04:00

Last year Amanda had the privilege of receiving the 6,000th wish granted by the Make A Wish Foundation of Michigan. We were invited to participate in the awards ceremony on day two of the three day, 300 mile bike tour called WAM (Wish-A-Mile). It goes from Traverse City down to Chelsea in three days! Seeing these riders coming in after two full days on their bikes and collapsing on the floor of the gym where they would spend the night before getting back on their bikes the next morning to finish their journey was awe inspiring. They were sore, they were exhausted and they were doing this to themselves willingly! They did this to raise money for Make-A-Wish. They did this to provide wishes to kids that they would probably never meet. Some of the riders were from previous wish families. I cannot think of a better way to continue the relationship formed with the Make-A-Wish staff than participating in their fundraising and awareness raising programs. The only word that comes to mind to describe what these riders go through is "brutal". But they do it year after year after year. (Keep in mind, my thoughts on the subject come from my own experience which is riding a bike one weekend a year and complaining of the sore fanny afterwards. These riders are people who actually enjoy riding, otherwise they wouldn't be there in the first place.)
The finish line of the WAM bike tour is called the Heroes Hurrah. It is a huge family festival of sorts where the riders are welcomed in and cheered as they finish their unbelievable journey. Each rider is awarded a medal when they come in by a former Wish Child who has been their Wish Hero throughout the event. The riders are matched up with their Wish Hero beforehand. They get pictures, details of the child's wish, the child can write encouraging letters to the riders and send pictures. The kids cheer on their riders and the riders fight harder to give a wish to another deserving child.
This year, at Heroes Hurrah, Amanda will be a Wish Hero. You can see her web page here. We are so excited to be able to participate in WAM and Heroes Hurrah again this year. (They have added a new 50-mile bike tour this year for those who cannot make the full 300-mile ride. Now THAT sounds like something I could train for!) We continue to feel the love and support of the Make-A-Wish staff as we prepare to take our trip to Sesame Place in July. When we get back, we'll head to Heroes Hurrah and say THANK YOU to everyone and anyone who will listen. Yet another situation in Amanda's life where the words "Thank You" just do not cover the gratitude we feel and wish to express. There are no adequate words.
Please check out the Wish Hero site and cheer on the team Amanda has been matched with. They could use your support and we would love for them to feel the love and support we received when Amanda was going through her treatments. I am sure you are familiar with the phrase "pay it forward", well, in this instance, we want to help Wish it Forward so that others may experience the blessings that we have.

Today in History

2010-06-03T12:47:00.001-04:00

Today is a special day. See here.

Sprinkler with the Tinkerbell Swimsuit. Yay Summer!

2010-05-30T18:41:00.001-04:00

Watching "Cars". Daddy's Little Racing Buddy

2010-05-28T20:41:00.001-04:00

"Meow Soup" ...poor Meow. 2

2010-05-23T19:41:00.000-04:00

"Meow Soup" ...poor Meow.

2010-05-23T18:39:00.001-04:00

Walking Tonight with Meow & the Pink Hanger. (?, shrug)

2010-05-21T20:50:00.001-04:00

Nebulizer "Fishy Face" treatments again. :-P

2010-05-08T18:43:00.001-04:00

I have the most AMAZING kid on the planet! It is an honor to be her mother.

2010-05-08T17:43:00.001-04:00

NASCAR PRINCESS!

2010-05-06T19:32:00.001-04:00

Sidewalk Chalk! :O)

2010-05-02T14:27:00.000-04:00

Loving it.

Yet Another No Nap Day. sigh

2010-04-11T19:01:00.001-04:00

Actual photographic evidence of a genuine SMILE! Sigh Mommy needed that.

2010-04-10T17:27:00.001-04:00

The roof, the roof, the roof...is a work in progress.

2010-04-09T20:23:00.001-04:00

Family Walk/Ride Time. I followed with the dog. Yay Sunshine!!!!

2010-03-23T19:41:00.001-04:00

Watching Sesame Street from a milk crate. Wha? Why not?

2010-03-22T19:18:00.001-04:00

Playworld Potty Prize w/ Ice Cream & Sprinkles!!!

2010-03-20T14:31:00.001-04:00

Big Kid Underpants !!! Cringe

2010-03-13T19:34:00.001-05:00

Let the games begin!
At the encouragement of the child psychologst who teaches the Love & Logic classes we've been attending, we jumped into potty training with both feet. Drew a line in the sand. Made a firm decision. EEK! (Is it too late for me to run away from home?)
I couldn't find any 4T rubber pants. They go up to 3T or 35lbs. She is around 40lbs. So, she sits on a towel on the couch, I'll probably sit her on a plastic bag in the car seat & hope for the best. We think we'll stick with diapers or pull ups during sleeping times (naps & at night) until she has things under control during waking hours. She says she "needs Mommy" when she's wet & she gets changed. She picks the undies & dresses herself. We did push her to sit on the potty & counted to 3 then gave her 3 Smarties. If she gets to a count of 4 then 4 Smarties (or M&Ms or whatever). She doesn't like to feel wet so she will have to eventually lean towards the potty...right? Right?
The more comfortable we can make her with the potty the better. I asked why she tries at school but not home. She said our toilet "growls" at her. I told her we are here to help her & would never let the toilet hurt her.
I have dreaded this her whole life. I guess if I look at it as a laundry problem instead of a battle of wills we'll all be better off.
Not knowing whether to push her out of her comfort zone or let her lead the way has gotten us to where we are. If it were up to her she would just stay in diapers forever. To be honest, it is easier on all of us that way. *sigh* But, I need to shove my baby bird out of the nest & hope she starts flapping her wings before she hits the ground.
YIKES!

Abominable Snow Manda!

2010-02-22T18:56:00.001-05:00

Birthday Girl with Meow and Fruity Cheerios. Yay 4!

2010-02-17T08:37:00.001-05:00

Math Lesson Via Pool Balls!

2010-02-07T19:36:00.001-05:00

We have PIG TAILS!!!!

2010-01-24T10:07:00.001-05:00

All Kinds of Karma on the 12th

2010-01-14T15:22:00.001-05:00

We seem to have started out 2010 with a bang! After two straight weeks of
feverishly cleaning, packing and painting our house, we met with two
realtors who basically told us not to bother trying to sell right now as the
foreclosures in our area were driving down home prices and we really can't
get what we would like (need) for the house. SO, the new plan is to wait and
see what happens with the housing market in the next year or two and see if
in that time we can be ready to cut and run when the time is right. We do
want to buy/build a new home (I have been daydreaming about vaulted ceilings
and walk-in closets...and a dishwasher...and a garage I can park in) but the
time is not right for that just yet.

Amanda had her check up at the oncology clinic on Monday where she
thoroughly impressed her oncologist by knowing each of the numbers and
letters drawn on a piece of paper and reciting scenes from the latest
Snoopy/Super Why/Clifford episodes she'd seen. The doctor said for a
24-weeker Amanda is "EXCEPTIONAL". We knew that of course, but it is nice to
hear it from an objective professional. :0) The doctor also told her that if
she would use the toilet she would send her a very special wrapped prize in
the mail. Amanda changed the subject. The potty is a bit taboo with her
right now.

On Tuesday Amanda had her CT scan and hearing screening. These occur every 3
months to ensure if the cancer comes back we catch it good and early. If it
were to come back, it is most likely to happen in the first two years
following treatment. As we are just past the one year mark we are
tentatively sighing half a breath of relief. (This sounds a bit like an
optimistic whimper if you listen close enough.) The scans were completely
clear and she passed the hearing screening again with flying colors. (They
check her ears due to the one chemo drug known to cause hearing loss in the
high frequencies. So far, no deterioration.) The blood work for the cancer
marker (AFP) is supposed to be below 8. Hers was in the hundreds of
thousands upon diagnosis, it is currently 2.4. (YAY!!!!) We will now wait
four months before she has another scan and if that is also clear we will go
to every six months. One step closer to the path that will eventually lead
us out of the woods. (What exactly does out of the woods look like again?)

Tuesday morning, in the Envoy, on the way to the hospital for the scans, we
were rear ended on the highway. Running late and trying to decide how bad
the hit really was I knew Amanda was not hurt when she piped up, "Wow, that
was a BIG BUMP!" I looked in the rearview mirror to see a dark colored sedan
behind us with a man wearing a baseball cap at the wheel. I debated for a
few seconds and, angry that we would be late and probably miss the scan all
together, I pulled off onto the shoulder. I again looked in the rearview and
the car was gone, he'd passed me and accelerated down the off ramp. I
checked my mirrors again and, as Sherriff Roscoe P. Coltrane used to say, I
was in "Hot Pursuit"! I followed the car and got the plate number, then
turned down the road towards the hospital. I checked the bumper when I
pulled into my parking space. The bumper was cracked, scraped with paint and
a piece of the other car's headlight was stuck in my tow hitch connector.
The guy should consider himself lucky we didn't have the trailer ball in at
the time. Anyway, after getting through the scans (the most traumatic part
was when she FREAKED out at seeing the CT machine, they have assured me we
can give her something for anxiety next time) and then finally getting to
work that afternoon, I found out I had to take the truck up to the State
Police Post to file an accident report. I gave the information and the plate
number. They would have to send a trooper to track down the car. I received
the call this afternoon that the "suspect" is not living at either address
that came up under that plate number and his license is suspended. This
leads me to believe he probably does not have valid insurance either. Crap!
I can only hope that Karma will come back around to this guy and I hope he
learns he hit a mother taking her 3-year-old daughter to the hospital!!!!!
*Guilt-Voo-Doo-Guilt-Voo-Doo* Also, thank goodness the damage to my vehicle
is minor and neither Amanda or I were hurt in any way.

Tuesday night thinking about my bumper and the fact we have half of a house
packed and are now not moving and we did not yet have the results of
Amanda's scans I decided that I would trade the stupid bumper for negative
scan results. Putting everything back into perspective. *sigh* It also
occurred to me that the one other real car accident I have been in was on
October 12, 2005. I was six weeks pregnant and T-boned by an elderly couple
who tried to blame everything on me for fear the man would lose his
license...which wasn't valid anyway. The cop let them off and I didn't even
play the pregnancy card! (To this day I am convinced that the anxiety about
that accident and the stress it caused lead to the congenital
brain/nerve/muscle defect in Amanda's eye.)

So, things should be calming down now as the year progresses, but I may not
drive on the 12th of the month anymore. I did hear this morning they will
now have rickshaws downtown, maybe I can ride one of those instead.

Mere :0)

Because We Don't Do Normal

2010-01-04T15:01:00.001-05:00

We are meeting with realtors this weekend. We will pick the one we think
will sell our house the quickest. We are talking to builders. WE.ARE.CRAZY.
We have two trips to NASCAR and a trip to Sesame Place scheduled for this
summer.

Hi 2010, I think you will not last long.

Mere :0)

Merry Christmas!

2009-12-24T14:12:00.001-05:00

Shopped out and about time too! We are looking forward to Santa and celebrating One Year of REMISSION!

Santa-cycling

2009-12-22T21:01:00.001-05:00

I have come up with a new theory to cure the over-population of toys. Even before Christmas we cannot seem to find our livingroom floor. So, my idea is, Santa should have an exchange program. Leave one new toy but take five old ones with him when he goes. I believe parents everywhere would get on board, and it would be a hit with both the Supernanny and Hoarders.

It's Beginning To Look A Lot Like Christmas!

2009-12-12T20:53:00.001-05:00

Holy Cow!

2009-12-07T16:35:00.001-05:00

I just found THIS <http://www.wishmich.org/Page.aspx?pid=880> !!!!!!! I had
no idea Amanda was a part of this. I am SO amazed and blown away. We just
signed up for Amanda to be a Wish Hero for next year's Wish-A-Mile bike
tour. One of the riders will have her name on a bracelet as inspiration
during the ride and when the riders come in to the finish line Amanda will
get to put a medal around her rider's neck. How COOL is that?!?!?

Everyone go buy Christmas cards from Make-A-Wish. They are showing our girl
lots of love.

Mere :0)

Art Prize 2010 look out!

2009-12-05T11:54:00.001-05:00

A Time for Reflection, Hope and Joy

2009-12-03T11:44:00.001-05:00

Amanda remains in the spotlight of Make-A-Wish Foundation of Michigan!!!

From: Make-A-Wish Foundation of Michigan [mailto:jboan@wishmich.org]
Sent: Wednesday, December 02, 2009 11:49 AM
To: marsoddy@sbcglobal.net
Subject: A Time for Reflection, Hope and Joy

You have been added to this mailing list because you previously supported the Make-A-Wish Foundation of Michigan.
If you prefer not to receive emails from us, Unsubscribe using the link at the bottom of the page.

A Time for Reflection, Hope and Joy

The holidays are a time of reflection and hope, as well as a time for great joy. This year, we've been particularly touched by the selflessness of a young man with a global view and the innocence of a little girl who loves Elmo as her dearest friend. We enter the holiday season by sharing these stories and our mission as we ask for your support to help us continue to enrich the lives of these amazing children.
Click here to read our holiday appeal >
Click here to donate to our holiday appeal >

More Ways to Make Wishes Come True:

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Blog for Preemies, Fight for Preemies

2009-11-16T23:34:00.007-05:00

Many of you know I go the extra mile to support the March of Dimes. I am vocal about it, I raise money for them and champion their causes as much as my schedule allows. I do this because I firmly believe that their work saved my daughter's life...the first time.
You all have been reading this blog to follow Amanda's journey through cancer. I have a confession to make, a revelation of sorts. This is not my first blog. I started blogging back in 2004 when I was desperate to have a baby and it wasn't working. I blogged through infertility, through pregnancy and through the NICU. Due to the graphic nature of infertility blogging (after all, we were discussing how babies are made) I kept that one anonymous. It was my secret group therapy, a place to meet and commiserate with like-minded hormonal infertile women.
For the March of Dimes Prematurity Awareness Month, the Fight for Preemies campaign and Bloggers Unite I shall bring these two worlds together. Following is a post I wrote while Amanda was in the NICU. I went by the pseudonym "Blue" and Amanda was called "Azure".

April 22, 2006 Expectations, Great and Otherwise

I don't know what I expected from pregnancy. I never imagined I would have the opportunity. After so many cycles ending in that stick with the single line I was absolutely dumbstruck by seeing two. Knowing it had been the result of the IUI I still looked quizzically at that double line and asked, "How did that happen?" I didn't really believe it then, or when the nurse called with the news of a positive beta, or when the nurse called with the more than doubled beta. I still wasn't really convinced when I got the quad screen or when we rolled in for the 20 week ultrasound. We could visibly see her moving all over the place on the screen but I couldn't feel her moving so it mentally and emotionally felt like I was watching someone else's home movie. What I need you to understand is how totally surreal the entire pregnancy seems to me, not just now that it is over, but the entire time! I was JUST starting to get used to the fact that I was pregnant with my growing belly and increasingly swollen feet when it ended. I did not bond with the baby in my uterus. I was barely able to accept the fact that she was there in the first place. I thought about having a little girl in the summer and the thought pleased me but mentally and emotionally I did not connect those thoughts to what was happening inside my body.
My water broke at 11:30am. Azure was born at 11:50am. In those twenty minutes we were asked repeatedly if we wanted extraordinary measures taken in order to save her life. In my shock and muddled thinking I was rendered speechless. I could not give them an answer. I had questions to ask such as: At 24 weeks and 3 days can she make it? Will she suffer? Will she suffer later due to her development outside of the womb instead of inside? Will she be in pain? I needed to have a discussion with someone explaining things to me so that I could make the best possible decision for the welfare of the baby. I still did not think of her as my daughter. She wasn't real enough yet. The thing is, there was absolutely no time for that discussion to take place.
Seeing her in the isolette in the NICU she barely looked like a real baby. How do I know this is my child? I did not experience labor and childbirth and bring forth into this world a bouncing baby girl. I had a traumatic experience with pain and fear and a voiding of something from my body (I never even pushed) and then T and I were left in a room alone and I was no longer pregnant and we didn't have a baby and I couldn't wrap my head around what the FUCK just happened.
I had specifically not had any expectations about what the labor and birth should be like because I wanted to relax and go with the flow. If I had a plan and things went another way then I might have been disappointed and I did not want to look back at what could possibly be my only birth experience with regret. What I had hoped for was to deliver her, probably with the aid of an epidural, and within the first hour after birth I wanted to do kangaroo care. That is to say, place her skin to skin on my chest and let her know where my breasts were just to get her used to the idea that food could be found in that general area. As it turned out, I wasn't able to hold her until she was three weeks old and the kangaroo care came much later at almost five weeks.
Azure had her immunizations Friday. I didn't think she would even have enough muscle tissue yet in order to get the shots but they assured me that they use a very small needle. Saturday she was "naughty" which is nurse speak for "she hasn't been breathing well and hasn't been pooping and has had more residual milk in her belly and isn't doing so hot right now". This was one of those days when I was not allowed to hold her, too much stimulation.
I look at that little girl, sleeping in her bed and I now realize she is my daughter. She has my nose and she is blond like me. Those things however do not make her my daughter. She is my daughter because I am there for her. I care for her. I love her and I am making decisions for her. Are they in her best interest? I hope so. I assume so. The biggest decision was already made. We decided to have them save her life.
I feel that all these things have been one big selfish act on my part. I wanted a baby. I wanted to try medical assistance to get pregnant before moving on to adoption and when things came to a head I held my tongue and kept my questions to myself and was grateful that my husband told the medical staff to do what they had to do to keep the baby alive. Yes, I find it amazing that should I still be pregnant right now I would be able to make the decision (CHOICE) to either continue or discontinue my daughter's life. I wonder if she would have been better off if we had just let her go. She wouldn't be struggling to do basic things right now like digesting, breathing, keeping her heart from stopping. Simple things like the sound of my voice, the light overhead, the gentle rocking of the chair or the supposedly soothing touch of my hand can be overwhelming to her. We are her parents and we had the CHOICE to let her live or die. I can't say for sure whether we made the right decision or not but I am glad we had the right to choose one way or the other. According to Tertia's post the other day babies in South Africa born below 2.2 pounds are not given oxygen support from ventilators. Azure would have died in that situation and it would not have been our choice, the choice would have been made for us.
I sat in the nursery at home Saturday night to pump. I looked around at the bookcase filled with toys, books and videos, at the changing table covered with clothes, diapers and skin care products and at the swing which is all set up holding a teddy bear no bigger than the girl who should be sitting there instead. I looked at that empty room and I felt sad that things didn't turn out the way they were supposed to. They weren't supposed to be this way. There I was pumping my breasts which would not have been possible had I not had a baby and yet, there was no baby. I was holding plastic bottles instead of cuddling my newborn. I do not yet feel like a mother and I do not think that I will feel like a mother until I get Azure home with me and I am the one responsible for her care. I will not feel like a mother until I no longer have to ask permission to hold her (Saturday and Sunday permission was denied), to bathe her, to change her diaper or give her medicines that she needs.
I did not have any expectations about what motherhood would be like, but I never expected it to be like this.

You can see more at www.navyblueelephanttrunks.blogspot.com. I encourage you to visit this other blog, and to read the posts following February 17, 2006 (her birthday) to see just how SUPER MANDA got her start in life. She was and continues to be truly amazing. A rockstar right from the beginning. Not every preemie has it so good, not every family is this lucky. It is for THOSE kids and THOSE families that I encourage you to support the March of Dimes and spread the word about living healthfully before, during and after pregnancy. WE never thought that WE would be one of THOSE families...and neither did they.

Thanks to @MakeAWishMI for the bike ride we took today! Future WAMmer!

2009-11-08T17:52:00.001-05:00

Abby Cadabby sans skirt but w/Elmo candy pail & magic wand!

2009-10-31T19:04:00.001-04:00

Happy Halloween !

2009-10-29T07:57:00.001-04:00

The cats on the shirt have purple eyes, just like the Halloween card she received from her "Grandpa & Kitty"! She was supposed to wear orange and black to school today. She insists that IF she dresses up this year she will be a ghost.
Tests last week showed she is still in remission! We'll check again in January.
Love to all!

Thanks to Aunt Amy & Sammie for the My Little Ponies!

2009-10-04T11:01:00.001-04:00

Maggie with "The Guys"

2009-10-02T20:04:00.001-04:00

Big Girl Bed!

2009-09-19T17:09:00.000-04:00

Just set it up today. Wish us luck in the transition! Amanda said, "I love my new bed!"

What's in YOUR Livingroom?

2009-09-04T21:29:00.000-04:00

Mere :0)
www.wishmich.org/mandasworld

Sent via HTC Touch from Sprint.

Sleepy Girl

2009-09-03T16:29:00.001-04:00

Mere :0)

Sent via HTC Touch from Sprint.

Make-A-Wish Footage

2009-07-27T11:43:00.001-04:00

Go to www.wishmich.org/onthetour
On the left you will see links to photos of Amanda's Elmo wish and another
link for the replay of the video of the Saturday Night Awards Ceremony. We
appear at the beginning of the ceremony (so you do not have to watch the
whole thing). I do suggest watching the video, at least through the
interview with Kevin Clash (Elmo's "Best Friend").

We had a BLAST! More detailed info to come, just wanted to share this bit
with you.

Mere :0)

www.mandameow.blogspot.com
www.marchforbabies.org/AmandaRileySoddy

Manda's Make-A-Wish

2009-07-25T12:33:00.001-04:00

Watch tonight online! www.wishmich.org/tour around 7ish (EST).

Summer Update

2009-07-17T15:21:00.001-04:00

In order of importance:

Amanda's blood work on Monday showed her AFP at 2.9 which is well within the
negative range. Her CT scan on Thursday was all clear. No visible signs of
cancer. This means that we will be hearing from pediatric surgery to
schedule an out patient procedure to have her port taken out. It has been in
just over a year and as it is not necessary anymore (they can just insert an
IV every 3 to 6 months as needed) it is safer to remove it for fear of blood
clots, etc.

She is healthy, aside from a bit of a chest cold the last couple of weeks.
She coughs and hacks like a middle-aged smoker in the mornings but then
seems fine. She is growing like a weed and tells us several times a day,
"I'm getting bigger!" She is talking more and can not only recite lines from
shows she has watched, if she knows it well enough, she will play one part
while I play the other part and we will act out the scene together. SO
FUNNY! She has also taken to telling us, "I'm SUPER Manda!" Hmm. Do you
think we need to worry about her self-esteem?

Make-A-Wish of Michigan is not only celebrating their 25th anniversary next
weekend, they are also announcing Amanda as their 6000th wish! They are
pulling out all the stops and it should be an amazing weekend with the
Wammys on the 25th (their awards ceremony for the Wish-A-Mile (WAM) 300-mile
bike tour, think Grammy Awards only for WAM) and the big celebration party
on the 26th with games and face painting, etc. for the kids. We will be
meeting some very special people but as there are surprises involved, I will
wait until after next weekend to put it all in writing on the internet. :-)

You may have noticed I have slacked off on the updates here. As is my
personal habit, I don't tend to write much when things are going well. Give
me something to worry/complain about and you cannot shut me up, but when
things are going smoothly...*shrug* Stay tuned for more information about
the Make-A-Wish weekend and our upcoming Make-A-Wish trip (there are changes
afoot, I'll fill in details when they are ironed out).

Thank you for your continued interest and support!

Mere :0)

www.mandameow.blogspot.com
www.marchforbabies.org/AmandaRileySoddy

When Wishes Come True

2009-05-26T10:41:00.001-04:00

We have done a lot of wishing where Amanda is concerned. First we wished to
have a baby, then we wished for a healthy baby, then we wished that our
preemie (not healthy) would live (we wished that one a lot), then we wished
that she would grow and be able to live a normal healthy life. Then we
wished she didn't have cancer and once again wished that she would live (we
wished that one a lot...again...still). We wish that this miracle girl could
just have some peace to be a "normal" kid.
The thing about wishes is, some come true, and some do not. She will never
be a normal kid. She will always and forever be the former
micro-preemie/cancer survivor who pulled through. Having watched her go
through chemo and her surgery and the hours and hours of waiting in the
hospital, we wished for something else. We wished we could give her
something to smile about. We were told that she qualified for the
Make-A-Wish program. I admit I RECOILED when this was first suggested. To
me, Make-A-Wish was to provide the last dying wish for a terminally ill
child. MY child was not terminal, MY child was going to make it, MY child
didn't need a wish. However, I learned that Make-A-Wish grants wishes to
children who have been diagnosed with "life threatening" diseases, not just
terminal ones. She just made the minimum age of 2-1/2 years and the cancer
was definitely life threatening. I still stalled and hemmed and hawed about
doing it. I thought we should let other kids go for their wishes because
they might need it more, or their families might not be able to afford to do
something special for their sick child(ren). I thought maybe Amanda would
qualify only by technicality and that by accepting a wish for her, we would
be taking the place of a child more in need who really did qualify. I was
wrong. She qualified honorably on all fronts. She was of age and her
diagnosis firm. We were not bending the rules or taking anyone else's place.
A wish was available for her and we only had so long to accept her wish or
she would lose the opportunity. I hesitated again, thinking about the money.
Make-A-Wish is completely run by donated money and resources. If we took a
wish, that was money taken away from someone else's wish. The social worker
at the hospital put these worries to rest for me by saying, "If you're that
worried about it, take the wish and make a donation yourself!" Wow! Ok
then, let's do it!
Many wish kids want to go to Disney, and this is the first question asked by
most people when they hear we are participating in the Make-A-Wish program.
This is such a common request that Disney World has a separate area
especially for Wish children and their families. Amanda however would not be
able to distinguish Mickey Mouse from Scooby-Doo so Disney was not a
reasonable wish, especially at this young age. What would give her the MOST
joy? The biggest smile we could hope for? What had gotten us through those
days and nights in the hospital? ELMO! We wished for Amanda to go to the
Sesame Street studios in New York to see the actual Sesame Street and meet
Elmo and as many other characters from the show as possible. The referral
was made, the ball has been set in motion, they are working on granting this
wish. (Whee! A trip to New York!!!! Mommy is going to be more giddy than
Amanda on this one.) They told us to expect travel to happen sometime next
spring. STILL totally excited!
THEN, last week I received a call from Make-A-Wish of Michigan regarding
their Wish-A-Mile bike tour. This is their biggest fundraiser of the year. A
300-mile bicycle ride from Traverse City down to Chelsea...in three days!
(Ouch, my backside hurts just thinking about it.) The day they come through
the Lansing area they will be having a big awards ceremony/banquet to honor
their sponsors, donors and participants. They want to grant a child's wish
that night, in front of everyone, to show what all of their hard work is
for. They chose Amanda's wish out of the stacks of wishes in the system
right now. They want us to go to the ceremony and present Amanda's wish, to
meet Elmo, as a SURPRISE for her that night. Oh. My. Gosh.!!!!! Super Panda
will be in the spotlight of Make-A-Wish of Michigan! They cannot guarantee
to get Elmo there that night, but they will try very hard. They will "pull
out all the stops" to make it happen. Our girl, our super-hero, will inspire
people to give to this most noble cause and show others what a positive
attitude can do when faced with the most horrible circumstances imaginable.
Super Panda the Super Star keeps getting bigger and brighter leaving me to
wonder, what in the world could happen next?

Mere :0)

www.mandameow.blogspot.com
www.marchforbabies.org/AmandaRileySoddy

Shameless Plug

2009-04-09T19:34:00.001-04:00

Amanda wants you to visit us at www.marchforbabies.org/AmandaRileySoddy!

We have supported the March of Dimes since before Amanda left the NICU. That first year we raised over $2,000! The next year, it became apparent that when one's child is in the hospital fighting for every single breath, the money rolls in a bit easier than when she is home and doing well! We continue to support the March of Dimes because without them we would not have our precious girl. She never would have had the chance to learn her ABCs, jump off the top of the slide at the mall or beat cancer!
Please consider donating to our walk, even if you feel it is a small amount. The March of Dimes was started by the idea that if everyone in the U.S. sent in a single DIME then we might be able to accomplish great things. It is by working together that our own small sacrifices make the most difference.
Please visit our site and sponsor our walk this year. www.marchforbabies.org/AmandaRileySoddy

Thank you for your continued support!

Mere :0)

This Day in History

2009-03-17T06:04:00.006-04:00

Many people will be donning green today to celebrate St. Patrick's Day. We with the name Riley get a little special attention, mostly the question, "Oh, are you really Irish?" To be honest, I do not know the answer to this question. I believe if I had to make a claim, there is more British blood in me than not. But, today, who is counting? Saint Patrick died around 460 A.D. Celebrating his life on this day has evolved from reverence for a Saint to wearing cheap green plastic accessories and drinking green tinted alcohol (All hail the Appletini!). However, in my small nuclear family today is special for more personal reasons.

You will remember that Amanda celebrated her third birthday one month ago today. Three years ago, that was one very rough month. They told me when she was born that if she lived through the first 48-hours we would have a better idea of how she might do. We got that far and then held our breath for the next time limit, and the next. At two weeks she suffered serious breathing issues, even while on the ventilator. They tried solving her trouble through three separate courses of drugs but it didn't work. She needed surgery. Surgery required her to be moved from our hospital to a different hospital up the hill (SO lucky* to live in Grand Rapids!) She was transported (on the vent, with all the monitors in a rolling incubator) up the hill to the huge NICU with the higher tech equipment on March 14 and she had her surgery. Two e-n-d-l-e-s-s days later, she was moved back "home" to "our" NICU. The surgery worked, she started to get better and we were able to breathe a sigh of relative relief.

On March 17 of 2006 I tried to convince Daddy to go to a concert he had been thinking about. The band Seven Dust was in town and I knew it would be a good break for him. A bit of a stress reliever. He decided what he really wanted was to visit Amanda with me that night. He made the right choice. That evening on her one month birthday, he was able to hold her for the first time. Coming from a family of three boys and having never been around a baby before, much less a tiny fragile preemie girl hooked up to tubes and wires all over the place, he was incredibly nervous, but ecstatic at the same time. After the drama and trauma of the month preceding, we were able to huddle together as a family and smile. Two days later, she moved from the ventilator to the CPAP machine. This was a major improvement which would not have been possible without the surgery.

Daddy's First Hold

Daddy's Girl

Today, after more drama and much more trauma, we consider ourselves VERY lucky*.

*Luck o' the Irish?

2009-03-10T06:24:00.003-04:00

It has been brought to my attention (thanks Steve) that I have not updated things in a while. This was not intentional, nor desirable, just the way things have turned out. When one has a three-year-old who is feeling better than she has in a while and is regaining a bit of freedom from constant visits to the clinic, one has less free time with which to write. I have composed many drafts in my mind but, sadly, they have not made it into the computer and will probably be forgotten before I press the "Publish Post" button.

To catch up: Amanda had her last week of chemo at the end of February. She got through the week fairly well. She was not getting her naps in as we would have hoped and had trouble sleeping at night which left her (and us) cranky. The following week she proved her numbers high enough that we could terminate the Neupogen shots she had been getting to boost her immune system. This means "No Pokes"! We have shouted that now and then throughout this experience but this time is different. This time it means, NO MORE POKES...ALL DONE POKES...MOMMY DOESN'T HAVE TO POKE AMANDA ANYMORE...YAY! This makes us ALL happy campers. The idea has not sunk in for our girl yet however since when she sees both Mommy and Daddy in the room at jammy time she whimpers, "Really quick", and we have to assure her that we will not be holding her down and jabbing her with a sharp needle.

You may recall that shortly before her birthday I mentioned her flying leap off the top of the slide at the "indoor playground" which is the play area at the local mall. My dear dear friend (I will leave out the "online friend" adjective, even though we have never met in real life we have been friends via the Internet for 7 or 8 years now) sent a belated birthday gift for Amanda. My description of Super Panda must have been quite inspiring as you can see below. The shield has the initial A in the middle and says "Super Manda". She has worn the cape to the clinic and pictures of her in it have been sent to the clinic and pharmacy staff who are all celebrating the end of her treatments.

Super Manda

Super Meow

"Poof!" with her magic wand

Mommy could use some magic to get her sleeping schedule back on track which *crossing fingers* should improve her mood a bit. Next challenge, getting her to wear her glasses again without a fight. We did it once, we can do it again.

They have scheduled another CT Scan and hearing test which will be the start of her every three months monitoring. If the cancer comes back it is most likely to happen in the next two years. We will watch very closely so in the event it does recur we can catch it early and start treatments again right away.

Oh, and on a side note; we are putting our DNA where our mouths are. Or rather, our mouths donated DNA for a study being conducted on Hepatoblastoma Origins & Pediatric Epidemiology (HOPE) which is investigating the link between low birth-weight babies and the specific type of cancer Manda had. (Hee hee, notice the past tense in that sentence?) We cannot continue to shout the praises of medical research saving our baby's life if we do not in turn participate in research that may save someone else's (or many other people's) babies.

She is calling to me now, reminding me it is time to get her up so we can start our Tuesday.

Happy Birthday Amanda!

2009-02-17T11:06:00.009-05:00

This is shaping up to be Amanda’s best birthday yet! Not hard considering her actual day of birth, what with not being able to breathe, eat or even open her eyes yet. Her first birthday was very joyful and a bit relieving (for us) considering the year we had been through and we patted ourselves on the back a bit that she had made it to her first birthday. We did have to stagger our celebration between three different parties as; we could not fit everyone in our house all at once. However, I doubt she understood the celebrations, though she did learn that she LOVES cupcakes. Then last year even with the new sled, giant teddy bear and Elmo chair the joy just did not sink in through the pink eye and pneumonia she had contracted…on her birthday.

Today should be better. We have been talking up birthdays in general and she knows she is turning 3! Also, she is between weeks of chemo so her numbers are up and she is actually feeling well. The timing worked out perfectly.

I said to her last night, "Yay Birthday"!

To which she replied, "Yay Birthday Cake"!

*shrug* She is a kid. She knows what she wants and says what she thinks. So, today we shall celebrate our dear girl making it through another harrowing year with cupcakes and presents and TONS of hugs and kisses. We will wish her health and happiness and keep our fingers crossed for a good uneventful year, and many more.

Original Birth Day 2-17-06

First Birthday - Handful of Cupcake

Second Birthday - Sick

Third Birthday

Meow dressed up for the occassion.

Super Panda

2009-02-16T16:31:00.001-05:00

Amanda's Cousin Isaak is eight months older than she is. He calls her
"Panda". I have always loved this as I have called her Manda Panda since
before she was born. Seeing how well she has done through the NICU and now
through her cancer treatments we have started calling her Super Panda. It
seems to fit really. (I envision a sort of cartoon like the recent Kung Fu
Panda with a mask and super-hero cape.) She seems to always come out with
the best case scenario. Her heart defect healed itself, her eye doctor says
if you didn't know she was a preemie you wouldn't be able to tell by looking
at her eyes (her glasses are the result of a congenital birth defect not
related to her prematurity). She has passed every hearing screening, even
after they gave her chemo which could result in hearing loss. Her
vocabulary, while slow to start, has picked up speed at a surprising rate.
She is smart and funny and...fearless. All the makings of a good super-hero.
She acknowledged this herself the other day while getting settled into her
car seat. She called herself Super Manda! (Grammy believes this stemmed from
her recent viewing of a Sesame Street video in which SUPE-R Grover played a
large part.)

She proved herself invincible once again on Sunday when we took her to
CenterPointe Mall to play in their kiddie play area. She decided to LEAP
off the top of the slide instead of simply sliding down. HOLY CRAP!!! I
saw her poised at the top, knees bent, arms back, looking like a skier on
the slopes. I yelled her name and started towards her JUST as she took off.
(Though she has passed all of her hearing screenings, LISTENING is a skill
she has yet to master.) Luckily, she landed on her butt about half-way down
the slide and slid the rest of the way down. I scooped her up at the
bottom, still terrified, but she was fine. Another parent said she was glad
her daughter had not seen it, as she would probably try to follow suit. Note
to self: Stand next to the slide!

As impressed as I am with our girl, I wonder how many times she can tempt
fate! Even Superman needed help from time to time when the kryptonite got
too close.

Mere :0)

Please visit our website for the March of Dimes, March for Babies.
www.marchforbabies.org/AmandaRileySoddy

Almost Normal

2009-02-10T10:13:00.001-05:00

This past week was out patient chemo for Amanda. These are long tiring weeks for her (and us). Usually by Friday we are all pulling our hair out. This time was different. She was definitely more tired than normal but we didn't have the tantrums or the huge battles and tantrums that we have come to associate with the out patient weeks. Yay!
Also, our girl seems to have developed a new skill. She is now "reading" her books to us! This is huge step in early reading and associating words with the pictures, etc. She should be ready for MIT any day now. :-)
She also decided to share her cold with me. Grammy said she might have it to. This tells me we probably all picked it up at the clinic last week, or Grammy and I got it from her despite our constant hand washing after wiping Manda's nose all last week. I am sitting in the waiting room at the doctor's office now (gotta love smartphones) hoping to avoid yet another case of labyrinthitis (ear pressure induced vertigo) which seems to be my trend the last few years. Amanda will be seen in the clinic tomorrow, unless she develops a fever before then. So far so good on that front. As long as we do not run out of tissues we will be just fine.
Other than that we are just keeping up with everyday life. Looking forward to Manda's birthday next week. How (and when) did she get to be 3 ?!?!

Mere :0)

I See The Light

2009-01-23T17:20:00.001-05:00

Amanda had her CT scan and BAER hearing test on Tuesday. All went very
well. The worst part is when she is waking up from the sedation and cannot
yet hold up her head but wants to get up and walk around! Floppy girl like
a rag doll doesn't understand why we are being mean and holding her down.

You may remember that our oncologist planned to take the AFP of 4.6 (normal)
and the findings of the CT scan (completely clear, no trace of cancer in
either the lungs or the liver) and discuss her case at the Tumor Board this
morning. She said there was a definite sense of optimism about Amanda, both
in how quickly the cancer responded to treatment and how well she has been
able to withstand the treatments they have given her.

Due to the fact that there were still some live cells left at the time of
the surgical resection of the tumor they have decided to do two more rounds
of outpatient chemo. This means we will no longer be checking in for the
4-day IV drips (YAY!) and it also means that we should be finished with
chemo somewhere around the last week of February. "There is a light at the
end of the tunnel," the doctor said on the phone today.

She can tell that we are all getting weary of this journey to health but we
all know that we would do whatever it takes to get Amanda well again.

Once we are finished with the chemo they want to see her every three months
for scans and blood work to ensure the cancer isn't coming back. We will do
this for the next two years since, if it were to come back, these next two
years would be the most likely time.

This is good news. This is optimistic news. This is what we have been
waiting to hear since the last week of June. We are almost there...

Mere :0)

www.mandameow.blogspot.com
www.marchforbabies.org/AmandaRileySoddy

Moving Forward

2009-01-13T14:29:00.001-05:00

Amanda's numbers were up enough at the end of last week that we decided to
go ahead with her outpatient chemo this week. They drew blood to check her
AFP again and we had a nice talk with her primary oncologist. We often see
her partners more than we see her but she is the one making all of the final
decisions about the course of Manda's treatment so it is nice to be able to
ask a question and get an answer rather then waiting for someone to check
with her and get back to us.

So here is what we know. The AFP (the cancer marker in the blood) is now
4.6 which is fabulous news. She said that number could fluctuate up and
down and even if it goes back up over 8 again it does not necessarily mean
something bad. They will just watch it. She said in young children that
number goes up and down but in adults it does not so don't panic if it goes
up. GOOD TO KNOW!!!! I am SO glad they told us this. The 4.6 is a smidge
higher than the 4.3 which signaled remission but close enough and with the
knowledge that it could have been much higher and still been Ok, we are very
happy indeed.

We also know that Amanda has a CT Scan and BAER hearing test scheduled on
the 20th. They are looking for any possible teeny tiny spec of possible
tumor in the lungs. They will have the pediatric radiologist scour the films
looking for ANY trace at all. The metastases in the lungs is what we are
most concerned about at this time since they went away with chemo and we are
hoping they stay away now. If the cancer were to recur, it would most
likely show up there first. She also said that if the cancer were to come
back it would probably show itself within the next two years. Not that it
is impossible for it to come back later than that, but more likely sooner
rather than later.

Armed with the current AFP and the results of her scans from next Tuesday
she will present Manda's case at the Tumor Board and get everyone else's
opinions on where we should go from here. Her thoughts at the moment are
that we should NOT do any more inpatient chemo. (YAYAYAYAYAYAYAYAYAYAYAY!)
This is due to the fact that the two drugs she gets inpatient are far more
toxic to the body and can cause significant hearing (hence all the testing)
and heart function damage (not good) even later on in life (she will need
testing throughout her life to watch for decreased function in both of these
areas). SO, we may still do two or three more treatments of outpatient
chemo like she is getting this week which are still very effective and do
not cause such serious side effects. She will give us more details after the
meeting of the Tumor Board. This is FINE with me. I would rather have a
room full of experts making recommendations and using their collective
knowledge. And, once again, Thank Goodness we live where we do and have
access to such amazing care and technology so close to home!!!

Eventually we will only need to go every three months for scans and blood
work to reassure ourselves that she is still cancer free. Someday we should
be able to drive through downtown without Manda calling out, "Oh, WE GO
CLINIC!"

Mere :0)

www.mandameow.blogspot.com

Good Stuff

2009-01-05T12:29:00.001-05:00

We are home!
Her numbers are up, she is free from infection and she asked for chocolate milk in the car on the way home. Cleaning, laundry and a nap will get us ready to return to life as normal tomorrow.

Mere :0)
www.mandameow.blogspot.com
www.marchforbabies.org/AmandaRileySoddy

Rumors

2009-01-05T04:54:00.000-05:00

According to our nurse, who's name is Mandy, we should be going home between 9 and 10 this morning. This will allow us time to talk to the doctor, have breakfast and get home and settled in for Amanda's nap this afternoon! We'll see how it goes.

Mere :0)
www.mandameow.blogspot.com
www.marchforbabies.org/AmandaRileySoddy

Not So Much Home

2009-01-04T22:48:00.000-05:00

8-oz over the course of the entire day was not enough to break us out of this joint. We are looking at release tomorrow if we pinky-swear we can get her to drink at home. They have stopped the antibiotics and morphine so she is on her own and doing great, except for the cabin fever and reluctance to drink. I firmly believe that it is more a power struggle than a physical problem so it should fix itself once we are home. (Hope I am right!)

Mere :0)
www.mandameow.blogspot.com
www.marchforbabies.org/AmandaRileySoddy

Maybe

2009-01-04T09:55:00.000-05:00

They will turn off her IV fluids and give her another transfusion of red blood cells. IF she starts drinking on her own we can go home this afternoon.
The ball is in her court. The not-yet 3-year-old is in charge.

Mere :0)
www.mandameow.blogspot.com
www.marchforbabies.org/AmandaRileySoddy

Progress

2009-01-03T16:36:00.001-05:00

Her temp is normal. Her ANC is up to 804. This is still below the safety zone of 1000, but does not require hospitalization. The jump from 107 to 804 in one day qualifies as rising rapidly and so far her cultures are still negative for bacterial infection. This is all fabulous news! So, we just need her to prove capable of eating and drinking on her own by tomorrow so we can go home! She sat on my lap this afternoon and munched on some banana and chips of all things! She also ate some M&Ms instead of just letting them disolve in her mouth and drool out the chocolate. Eating is good but drinking is necessary and she is still turning down all offered liquids. They did back down her IV fluids hoping to help her feel thirsty.
The final clue that she is feeling better is the fact that her display of frustration, the whining and wimpering (a sound Daddy described as "like a mouse crying") has changed to full out bucking-bronco anger. Mommy has been beat up more than once today trying to prevent her from hurting herself or the IV tubes.
Fingers crossed for a trip home tomorrow.

Mere :0)
www.mandameow.blogspot.com
www.marchforbabies.org/AmandaRileySoddy

Friday Night

2009-01-02T22:16:00.001-05:00

So her temperature is down again. She needs to keep it down and show her numbers are rising "rapidly" before she can go home. She has sores in her mouth and is refusing to eat or drink. She won't even swallow her own saliva, instead letting it build up and drool out of her lips. They are giving her a low dose of morphine to fight the pain hoping she'll eat something. She did munch a few Fruit Loops tonight so hopefully they are on the right track.
We are settling in for the weekend and hope to go home sometime on monday. That of course is dependent on her temp staying down and her blood counts going up! Meanwhile, she will continue to whine, cry and throw things in her angry frustration. We will attempt to hide our own frustrations from her.

Mere :0)
www.mandameow.blogspot.com
www.marchforbabies.org/AmandaRileySoddy

I Told Her So

2009-01-02T06:30:00.002-05:00

The nurse came in with Tylenol. Manda *freaked* out! I asked what our other options are and she mentioned Tylenol is also available in suppository form. I am left wondering how there isn't an IV fever reducing med. Her fever is going up again. Not good.

Mere :0)
www.mandameow.blogspot.com
www.marchforbabies.org/AmandaRileySoddy

3:46am

2009-01-02T03:55:00.001-05:00

Her temp is back up. They just drew new blood work including a new culture. Start the clock over for another 48-hours. They asked if she would take Tylenol, so at least now we can start to treat the fever. However, as oral meds require her cooperation, I told the nurse, "Good luck".

Mere :0)
www.mandameow.blogspot.com
www.marchforbabies.org/AmandaRileySoddy

So Here We Are

2009-01-01T18:08:00.000-05:00

Her temp has been down today but is now climbing up again. Not good.

Yesterday we were all concerned because her ANC (Absolute Neutrophil Count) was 110. This is concerning as anything below 1000 signicicantly reduces her ability to fight off infection. This morning we found out that the 110 was incorrect. Her number yesterday was actually 38. Yes, that is right, 38. Today's number was 0. That would be Z-E-R-O. Nowhere to go but up from her, huh?

Her level of platelets also dropped from 70,000 down to 26,000 so she is getting a transfusion of those as I type and when that is finished she'll get a blood transfusion to raise her other counts.

She has refused to nap today though was VERY close to dropping off twice, just never made it all the way to sleep. She is now whining (for the third straight day), eating cookies and M&Ms (the only source of food she hasn't tried to throw back at me when offered) and complaining that she has owies. She has refused to drink water, apple juice, white milk and chocolate milk. This is not good. She could be developing mouth sores. If she stops eating we could be her a while as they will need to give her IV nutrition.

If her fever creeps up again they will draw another blood culture and the 48-hour clock will start all over again. They can declare a positive test rather quickly but wait the 48-hours with nothing growing to declare her negative for a bacterial infection. The main concern here is that she might have developed an infection in her port. They are giving her antibiotics to fight off whatever might be there just in case. (SuperBugs be damned, she has been on one type of antibiotic or another since February.)

Wish us luck in sleeping tonight, I am working in the morning!

Mere :0)

www.mandameow.blogspot.com

3:42am

2009-01-01T03:46:00.001-05:00

Her temperature has returned to normal but we are here for the duration of the blood cultures. Better to be safe than sorry, so we will just add this as one more story to our journey.

Mere :0)
www.mandameow.blogspot.com
www.marchforbabies.org/AmandaRileySoddy

Fever

2009-01-01T00:30:00.001-05:00

We have actually been extremely lucky to have made it this far before our first hospitalization for neutropenia. Her numbers are at rock bottom, so she cannot fight off infection. She has been there before but this time she added a fever which could be a sign of infection. They took blood cultures and will let us know in 48 hours if anything shows up or not. Until then, we are in hospital.

Happy New Year!

Mere :0)
www.mandameow.blogspot.com
www.marchforbabies.org/AmandaRileySoddy

New Year's Eve

2008-12-31T18:00:00.001-05:00

This New Year we will hunker down and hope for an early bedtime. Manda is feeling quite poorly. We ended up taking her into the clinic today when she wasn't due until Friday. She is very run down and just not herself. Even the staff at the clinic mentioned the change in her personality.
We are watching her temp. Anything above 101.5F and we will be ringing in 2009 in the hospital!

Mere :0)
www.mandameow.blogspot.com
www.marchforbabies.org/AmandaRileySoddy

Looking Ahead

2008-12-23T16:16:00.003-05:00

Thank you all for your wonderful words of congratulations and support. We are truly amazed and relieved and happy to be able to celebrate Amanda's REMISSION this Christmas. This has been my goal all along, to be cancer free by Christmas.

However, we are not done yet. The fact that she had metastatic spots in her lungs at diagnosis means she is at high risk for the cancer to come back. In order to avoid this we will continue the chemo through the month of February. She handles the chemo very well and has not had any major side effects from the chemo yet (no hearing loss or damage to heart tissue, etc.) so it makes sense to keep going. We can't guarantee it won't come back, it might, but we are throwing the big guns at her now in hopes to avoid a recurrence. (Sorry Flicka, we still have to give her shots, for a little while longer at least.)

We are scheduled to get out of the hospital tomorrow in time to celebrate Christmas. We are looking forward to regaining health in the New Year and hope that by summer we will simply be going in to the clinic for blood work once in a while instead of twice a week.

Please note the new addition on the left of the blog page. We are planning on walking in the March for Babies again this year. Some might think that we would change our focus now from Preemie Prevention to Cancer but you see, it is all related! Hepatoblastoma is a rare cancer but there is a higher percentage of preemies who get it than the rest of the population. Is it due to the premature liver cells? Is it due to the oxygen that is given in the NICU? More needs to be researched about this particular topic. Would Amanda have had cancer at all had she been born full-term? We will never know. BUT, we can help find the answers to those questions so that maybe in the future other families can be spared what we have gone through in the past 2-1/2 years.

Thank you all for your continued support. We can see the light at the end of the tunnel but we are not out in the clear just yet. Rest assured that Amanda remains happy, energetic and too smart for MY own good!

How Do You Spell Relief?

2008-12-22T08:48:00.001-05:00

R-E-M-I-S-S-I-O-N !!!!!!! (!!!!!!!!!!)

Mere :0)

www.mandameow.blogspot.com

Bonus!

2008-12-19T21:28:00.001-05:00

They added Benadryl to Amanda's anti-nausea meds which has helped her go to sleep. This is important for two reasons.

1) She did not have a nap today and spent most of the day at the clinic, which wears her out, so she has been cranky and pushing the limits.

2) Harry Potter and the Order of the Phoenix is coming on the hospital's family channel at 9:15 and now Mommy gets to watch her movie in peace!

We were told by the nurse today that only her Oncologist can tell us whether she is in remission or not and we were not able to talk to her today. We are hoping that her partner might be able to answer that question during rounds in the morning.

Gotta go..."Wotcha Harry?" !!!

Mere :0)

www.mandameow.blogspot.com

Manda Meow

World Prematurity Day // Bloggers Unite

Seriously?

Spiderman ain't got nuthin on my kid!

Hot Shot!

Meow (in backpack) going for a ride!

Haircut 2011

First Bubble Stuff of the Year!

Amanda in her "Wonder Pets" flyboat (box)

Princess chair cupholder full of race cars. That's my girl!

Monsters Inc watched from the hall. Too scary to actually be in the room.

Happy Birthday Sweet Girl

Seriously

Digging Out 2011

Gymnastics!

"Fishy Face" = Nebulizer + Charlie Brown Valentine's DVD. :oP

Shopping: Manda said "I'm covered in vegetables!"

Radiator Spring's First Bowling Alley!

Post Fabulous Fun (while sick) Weekend Nap

Oh Boy!

Packing her rocket ship!

Relatively Speaking

The Girl Who Lived

Just Got the Call

Manda getting a "Maggie Snuggle"

Not the Good Witch but not Wicked either, Presenting The Cute While Frustrating Witch of the Mid-West!

Pumpkin Patch Kid. She chose a mini pumpkin for Meow. :O)

Cold Stone Creamery Make-A-Wish Ice Cream Social!

Funny Kid

Manda with her new "Hula-Loop"

WAM 300: 2010

HAPPY 4TH OF JULY!

Sticks don't taste good. :-P

Too Hot + No Nap = Fell Asleep on the Floor. Poor Girl.

Slip and Slide! Cool fun on a hot day in Cleveland.

Wish it Forward

Today in History

Sprinkler with the Tinkerbell Swimsuit. Yay Summer!

Watching "Cars". Daddy's Little Racing Buddy

"Meow Soup" ...poor Meow. 2

"Meow Soup" ...poor Meow.

Walking Tonight with Meow & the Pink Hanger. (?, shrug)

Nebulizer "Fishy Face" treatments again. :-P

I have the most AMAZING kid on the planet! It is an honor to be her mother.

NASCAR PRINCESS!

Sidewalk Chalk! :O)

Yet Another No Nap Day. *sigh*

Actual photographic evidence of a genuine SMILE! *Sigh* Mommy needed that.

The roof, the roof, the roof...is a work in progress.

Family Walk/Ride Time. I followed with the dog. Yay Sunshine!!!!

Watching Sesame Street from a milk crate. Wha? Why not?

Playworld Potty Prize w/ Ice Cream & Sprinkles!!!

Big Kid Underpants !!! *Cringe*

Abominable Snow Manda!

Birthday Girl with Meow and Fruity Cheerios. Yay 4!

Math Lesson Via Pool Balls!

We have PIG TAILS!!!!

All Kinds of Karma on the 12th

Because We Don't Do Normal

Merry Christmas!

Santa-cycling

It's Beginning To Look A Lot Like Christmas!

Holy Cow!

Art Prize 2010 look out!

A Time for Reflection, Hope and Joy

Blog for Preemies, Fight for Preemies

Thanks to @MakeAWishMI for the bike ride we took today! Future WAMmer!

Abby Cadabby sans skirt but w/Elmo candy pail & magic wand!

Happy Halloween !

Thanks to Aunt Amy & Sammie for the My Little Ponies!

Maggie with "The Guys"

Big Girl Bed!

What's in YOUR Livingroom?

Sleepy Girl

Make-A-Wish Footage

Manda's Make-A-Wish

Summer Update

When Wishes Come True

Shameless Plug

This Day in History

Yet Another No Nap Day. sigh

Actual photographic evidence of a genuine SMILE! Sigh Mommy needed that.

Big Kid Underpants !!! Cringe