Careful What You Wish For

The Short Version

• Two New Diagnoses

1) Spastic Diplegia - A sub-classification of the most common form of
Cerebral Palsy.

2) ADHD-Combined type - Both inattention and hyperactivity/impulsivity

• Mere FREAKS out

• Mere slowly starts collecting herself again




The Long Version

I've been wanting...needing to write for a while but felt like I had to hold back now that I am no longer anon. However, Julie mentioned something the other day which opened my floodgates. I typed up a huge purging comment on her blog and then deleted it because that wasn't where it belonged. It belongs here, where it all began anyway.

I took Amanda to the orthopedist back in October to follow up on her knock knees which are no longer knocked. I asked at that time about her toe walking which her school physical therapist had recommended we check into. She has tight heel cords, she doesn't get full range of motion when she walks however she is able to walk, stand, sit, climb ride a bike and do what is physically necessary for school so PT through the special ed services at school has been discontinued. She is able to walk with "flat feet" if we remind her to concentrate on it, but her natural gate is on her toes. The orthopedist said she probably has a mild form of Cerebral Palsy and if we took her to the neurologist for a formal diagnosis we may be able to get more services for her, either insurance covered physical therapy or through the school again.

We had the neuro appointment at the end of March. The neurologist was a friendly bright engaging young woman (loved her!) who talked to Amanda, not just me. She said it is quite common for micro-preemies to have some scarring in the frontal lobe area of the brain. Seizures are not uncommon so she ordered an EEG (still awaiting those results). She agreed we should definitely follow up with the child psychologist on the ADHD but that the seizure issues could mimic ADHD. The EEG will determine whether we pursue anti-seizure meds or ADHD meds as treatment. She decided not to do an MRI at this time which could conclusively diagnose these issues for us but would severely traumatize my poor girl who is acting out like CRAZY right now from the two visits to the neurologist's office within a week (initial visit then EEG). The doctor had enough information from the circumstantial evidence to give the diagnoses.

She has Spastic Diplegia, which means both of her legs are affected, she may have normal intelligence (also to be checked by psychologist) but learning disabilities and issues with fine motor skills can be a problem for many patients.

The neurologist agreed the sensory processing issues seemed apparent as well however, Sensory Processing Disorder (SPD) is not considered a medical diagnosis in and of itself and therefore insurance will not pay for therapy. Let me explain how CRUSHING this feels. What I feel would do her the most good is sensory integration therapy. This will not be covered by insurance. Insurance will pay for "rehabilitative" therapy not habilitative. Meaning, they will cover her to regain a lost skill, but not to gain a skill she didn't have before. Our best bet may be a local hospital that specializes in rehabilitation which has a special program for Pediatric Cerebral Palsy Therapy which includes sensory integration therapy along with PT, OT and Speech.

Sensory Integration Therapy is my main goal which is not covered by insurance. There are a few very good private therapists in town and I will just have to figure out a way to pay for them because the sooner she gets help the better chance she'll have in school these first early years. I need her to like school and to continue to LOVE books and learning new things. She is going to need this resolve as I fear school in later years will be a huge challenge for her organizationally and just trying to keep up and fit in and feel equal.

It is my belief that the SPD is her main issue right now. She definitely has auditory processing differences, is sensory seeking, inattentive/distractible has multisensory processing issues...the list goes on. So, let's look at this. Trouble processing what her senses are telling her, inattention and highly distractible/impulsive. Sensory seeking means she is constantly trying to FEEL movement/touch/SOMETHING. Put these things together and they sound like a kid with ADHD, no?

I am not saying she doesn't have ADHD, but all the meds in the world will not fix her sensory processing disorders. We need to start with those first, I think if we can get those under better control the ADHD will be easier to manage and symptoms will be much less than they appear right now.

I went looking for these diagnoses believing they would help me get her the support she needs to continue to achieve and succeed in school. They recommended last year that she go to a special ed preschool. That did not work out logistically for our family and I chose to keep her in a private preschool/daycare class with itinerant (30-mins/wk) occupational therapy through our local school system. She has met 3 out of the 4 goals on her IEP and has made progress on the fourth. She is doing well. Next week is parent teacher conferences with her preschool teacher to be followed by two rounds of kindergarten screening. We will determine in the next month whether she will attend Young-5s or Kindergarten next fall. I don't really know what to wish for. I think she would do well in the Young-5s class and be more equal to the kids in that class but she will be almost 6 when the school year begins. Not so bad now, but down the road the difference in age will become more apparent.

Also, her occupational therapist said she is doing so well she doesn't need special ed help anymore. She can exit from the program. All fine and good, I am glad she's doing so well, but that means in order to get help again she has to show signs of not being able to keep up. Why make her fail in order to offer the support she needs to succeed? I want an IEP with accommodations for ADHD at the very least. Keep her in the system and under the watchful eye of her teacher and the school social worker. She will need the extra help, I am sure of it.

I learned to advocate for my daughter in the NICU five V-E-R-Y long years ago. I strengthened that skill in the pediatric oncology unit three V-E-R-Y long years ago. I continue to struggle with that on a daily basis only this time it is with medical and school environs.

Here's the thing. This whole business has been hard on me. I went into a depression over the past few weeks. Figuring out school for next year plus the fact that due to our school choice she will most likely have to change daycares and I LOVE our current daycare and do not want to leave. Not knowing whether she'll be best suited for Young-5s or Kindergarten and whether IEP accommodations would make a difference in that decision. I need to make all of these decisions final in the next month or so because if we move to the new daycare I want her to spend the summer there getting used to the new environment before school starts in the fall. Hoping she makes these transitions more smoothly than is her customary way. Looking ahead to our next cancer check which will send her off the deep end again behaviorally when we haven't quite pulled her back to "normal" from the neurology appointments yet. I need to find out what type of therapy she can/will get into and when that will happen so that I can determine what my own work schedule will be and hope like hell my company is Ok with it. As you can imagine, I have used the "I need to be gone because my daughter..." excuse a few times in the last five years and that might be wearing thin. I need to keep my job since our family uses my company's health insurance.

What therapy does she need? Where can she get it? When can she get it? Will the time and place of this therapy threaten my job? How are we going to pay for the therapy ? It cannot take place during school hours as that needs to be a priority.
I want to cry.
Why me? Why her? Hasn't she been through enough? Haven't we all been through enough? Just as Julie asked, having been through everything we have been through, aren't we deserving of an easy path now?
Yes...But...this is the path we are on, so we need to keep going. Can't really turn back now can we?

Next week should bring at least a couple of answers. We will have the parent-teacher conference with her Pre-K teacher and get her recommendations for next year. She will go through her first of two kindergarten screenings. Hopefully we will get the results of the EEG so we can begin looking at treatment options. I will feel better when we have a plan in place. Right now I feel like I am drifting and don't know which way to turn.

This is all a very verbal outpouring of what has been going through my head lately. Pictorially it would look like this. I am done stressing/depressing about it. I will get answers as they come, make decisions from there and hope for the best possible outcome. *crossing fingers*

Happy Birthday Sweet Girl

Celebrating today what I could not enjoy 5 years ago.

Dr. Google Follow Up...

Well, not really a follow up as that indicates I actually have more information than I did before. I do not. However, I have come to terms with the fact that IF she does get a diagnosis of Cerebral Palsy it will help her get special education services at school without having to re-qualify every 3 years. As it stands, if she is not behind enough, doesn't have a big enough delay at the time of qualification evaluation they can graduate her from services and in order to get help again later she would have to demonstrate the appropriate big enough problem in order to get help. My kid is smart and fairly talented, though highly uncooperative during testing, so she usually shows only slight delays. The CP would give us the shoe in without having to jump through hoops the rest of her school career to get the little boosts of help she will certainly need from time to time.

So, I have not heard from the neurologist yet as to when we will be getting the testing done but I think in the end it will be a good thing. She might not have it, if she does it is definitely a mild case, but it might be just enough to ensure she gets the extra attention and help she is going to need in order to succeed in school.

I am ok with that.

I will be checking into schools in January and will hopefully find a good fit for her for next year when I anticipate she will start either Young-5s or an actual Kindergarten class. We are not too excited about our home school district so I will be looking into charter schools and school-of-choice options.

Keeping my fingers crossed and hoping for the best.  

 

 

 

 

Dear Dr. Google,

My child has been referred to a neurologist to be tested for Cerebral Palsy. Please advise. I know nothing.

Telling myself not to worry isn't working either. I know it would be a slight case IF she even has it, I am concerned about a *LABEL* and what that could mean for her. At the same time, having that label could help provide services she could use, like physical therapy. I know my kid will never be normal but adding things to her LONG and SPECIFIC medical history is not on my list of things to do.

Crap.

The Girl Who Lived

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 about 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.

Bad Hair Day

So I washed and prepped my hair this morning with the full intention of using my flat iron for the first time in a long time (finally colored my hair so the roots are not so blatantly screaming "I'm old"!) only to find, once I had my 10-minutes left before leaving the house, that the flat iron had never heated up!  What to do with poofy straight-ish/wavy hair and no time? I spritzed it with water and leave-in conditioner, scrunched it a bit and pulled one side up with a bobby pin. It has not helped. As the day goes by, I am getting more and more frizzy. I am starting to look like Monica in the episode of Friends when they went to Barbados!

If only I had an umbrella drink

"Traumatic Birth"

So I left a comment on this site in reference to my own birth experience and how I felt about it in terms of "trauma". It went something (exactly) like this"

The birth of my daughter was traumatic. Not because it wasn’t natural but because it was 16 weeks early. It was unusual in that as a micro-preemie she was born vaginally vs. via C-section. They didn’t even have time to check to see if I was dialated at all. I DID suffer PTSD following her birth and during the time she spent in the NICU. It was the worst experience of my life. But in time, through loving her and mothering her and caring for her I did get over it. Do I wish I had a long natural labor listening to music that I chose and spending time with my own mother, mother-in-law and husband as I labored? No. That was the birth plan. Things did not go as planned. Things went terribly wrong. But you know what? I made it through a bit worse for wear. My daughter lived and survived CANCER to boot! (The cancer is thought to be related to her prematurity.) My husband made it through (he was traumatized too, are there Dads speaking up as well?) and we have the family we always wanted…4 years later.
“TRAUMATIC BIRTH” is true in my case, not because things didn’t go as planned, not because I did not have the care I needed or deserved, but because my daughter could have DIED at any minute in the following 3-1/2 months…but didn’t.
I am now a healthy mom. I now have a healthy 4yo girl. I am over the PTSD of her birth and NICU experience. It DOES get better.
I do not tend to share my birth story when in the company of strangers because it is truly scary. Not just a “birth-plan-gone-wrong” but a true medical nightmare! Some think that medicine has no part in the birth experience at all. If that had happened in my case my daughter would have died immediately. I would not have my happy healthy blonde haired blue eyed mini-me that I have today. I am SO grateful for the medical staff who saved my daughter from the NICU staff right down to the OB’s receptionist who told me that I should go down to L&D “just to be on the safe side”. If I had not gone, my daughter would have been born in my office and she would not have lived. THANK GOODNESS for the amazing medical professionals who have cared for me and my daughter in the past 5 years.
I hope you all find the peace you are looking for, the peace that I have found with my beautiful funny and incredibly loving family.

What say you? Was your birthing experience "traumatic"? What makes you think so (whether you answered yes or no)?

I definitely think mine was overshadowed by the NICU and the whole "my daughter could die at any second" thought process that we held for about a year or so. To this day, if I realize that I have not heard her move on the baby monitor (4yo still has the monitor in her room) I listen intently to check whether she is breathing or not. I STILL wonder if THIS will be the day that I go to check on her or wake her up for preschool to find her dead.

That being said, it has nothing to do with HOW she came out of my body. It has everything to do with WHEN she came out. Do you think I would feel this way if I had been pushed/forced/co-erced/convinced to have a C-section?

This same thought is contrasted by the friend of a friend who went in for a normal prenatal checkup to find the baby had died in-utero overnight. If one day can make such HUGE differences for preemies in the NICU, it HAS to make a difference for babies past their due dates as well. Don't you think?

I don't know.

WAM 300: 2010

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)

 

 

We've Come a LOOOOOONG Way Baby!

Four years ago today Amanda came home from the NICU. We thought the hard part was over. We were SO WRONG! Celebrating our beautiful funny affectionate girl today.



105 Days Old!


4 Years Old!

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

Big Kid Underpants !!! *Cringe*

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!

We have PIG TAILS!!!!

All Kinds of Karma on the 12th

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

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)

Santa-cycling

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.

Art Prize 2010 look out!

Aaaaaand Here We Are

There is simply too much to put into one post. See
www.mandameow.blogspot.com for the story of Azure's cancer journey leading
us up to this point.

She is healthy.

She is HIGHLY ENERGETIC (!!!!!)

She is and always will be amazing.

Azure/Amanda
Blue/Meredith

Nice to meet you. :0)

Vampires Strike Close to Home

I was listening to the audiobook "Breaking Dawn" the other day, the final in the Twilight series of Teen-Vampire-Angst. **SPOILER ALERT** What hit me the hardest was not the end of the story, not saying good-bye to the characters. I was blind-sided by the traumatic birth and the fact that, following the birth of her baby, Bella was separated from her, for the baby's own good. Later, she has to go meet this baby who she doesn't yet know as her daughter, a stranger.
THAT'S HOW I FELT going into the NICU for the first time!!!! My daughter was shown to me for a fraction of a second before being whisked away to the NICU (with good reason of course) and T and I were left in the room alone. Hours later we went to meet our daughter. We were taught how to scrub in, put the hospital gowns over our street clothes and lead into the room full of brightly lit isolettes and warming beds. HOW DO I KNOW WHICH ONE IS MINE? I didn't know my own daughter, the one who had been a part of my own body that very same day. I had to rely on a stranger to tell me which bed to go to. I didn't know what I would find, I didn't know what she looked like. All I knew was that, at that point, she was still alive.
THAT SUCKED!!!! I have a bit of a love-hate relationship with the Twilight series of books, but this particular story-line got my attention. I GOT it, because I had LIVED it.
*sigh* I think I need to go back to simple fun books like the Harry Potter series or Anne of Green Gables or something.

Azure Update January 2009

Well, let's see. I have not been writing here, as I said I would, basically
due to the lack of time/energy involved in doing so.

Let me bring you all up to speed on Azure's condition. She was diagnosed at
the end of June with a tumor in her liver that had already metastasized in
her lungs. Not good. Very, very not good. When the doctor looks at you and
says, "...but we always have hope" it is never good.

She received her first dose of chemo on July 1st. Since then she has been
going back and forth between inpatient chemo, which is a weeklong stay in
the hospital for her and myself, and outpatient chemo where she has to go to
the clinic everyday for a week. Running after an extremely active
2-year-old with an IV pole...not so easy. The good news is, chemo does not
effect toddlers the same way as it does adults, or even older children. She
has not had the nausea one would assume, just periods of being a very picky
eater. She did lose her hair and now has what one mother calls "halo hair"
which is almost invisible unless there is light casting from behind.

She had surgery in October to remove the tumor, the right half of her liver
and her gall-bladder. We were in the PICU for days following just to keep
her on IV pain meds. Remembering the desperation in her eyes when she was
in so much pain and I couldn't do anything to help her makes me ill. I hope
like hell she never feels that kind of pain again the rest of her life. The
pathology from surgery was not as good as we had hoped. They left some
tumor cells behind right at the edge of the resection and there were still
live cancer cells instead of all dead ones. For this reason and because of
the advanced stage of cancer at diagnosis they continued to treat her
aggressively with chemo. They are hitting her with the big guns that they
would have used later in the case of a recurrence. This meant back to the
schedule of alternating weeks in and weeks out of the hospital, usually with
a week or so in between to let her recover.

Along comes the week of Christmas. We learned that our collective Christmas
Wish had come true. Azure is in REMISSION! This means there is no evidence
of cancer either on the CT Scans or in her blood work. This is amazingly
good news and we celebrated the holidays with true joy. We had had enough
of 2008 and were looking forward to ringing in the New Year and good
ridance, etc.

Then she spiked a fever on New Year's Eve. Back to the hospital we went for
blood cultures, antibiotics and IV fluids. She refused to eat or drink and
felt down right crummy. They didn't want to let us go home until she proved
she would drink on her own, but she found the one and only thing she could
control herself is what goes in her mouth. She refused to drink. After two
days of turning down the IV fluids hoping to make her thirsty they made us
promise to push fluids and call if we thought she was getting dehydrated and
let us go home. She is feeling better now but lashing out at us in
frustration and anger in a way only a 2-year-old can do. She throws
tantrums with kicking, screaming, hitting, biting, etc.

It has not been easy. The past 6 months have been harder on us than the
3-1/2 months she was in the NICU. T switched jobs twice over the summer and
did not have vacation time available and we have health insurance through my
job which meant that I had to keep up 40-hour work weeks. Thank goodness for
my mother who provided both free daycare and took her to clinic appointments
and sat with her in the hospital when T and I both had to work. We are worn
out! People keep asking if we have thought about having another child yet.
Ha ha ha ha ha! (I actually have an appointment to speak with a surgeon
about either having my tubes tied or removing all but one ovary. IF we add
to our family it will be through adoption.)

Anyway, there is a light at the end of the tunnel. She has once again
proven herself a survivor. She lived through cancer, now we just need to
get her through the remainder of her chemo treatments without any infections
and we can move on to cancer prevention and follow up checks...for the rest
of her life.

Thank you all for checking in on us. The positive vibes are still working,
our girl is Amazing.

Unbalanced

My major issue right now is feeling unbalanced and a bit out of control (duh). I am being pulled in too many directions at once. I listened to my audiobook of the 7 habits this week (you know those highly effective people from the 90s) and I am trying to implement as much as I can.

 
The roles in my life that are the most important right now are: Mother, Wife, Employee and Self. The Friend/Relative one can come and go from day to day depending on the circumstances. Let's take a look.

Mother: Azure is crying more and asking for me. She needs me. She wants me when she doesn't feel well.  I want to spend as much quality time as I can with her. We are working on her ABCs and counting to 10 and she tries her hardest to sing "Row Row Row Your Boat". She can do these things with anyone. I can leave her in someone else's quite capable care and she would still be fine and she would still learn these things. However, she and I would both know that I was not there.  I told the social worker at the hospital this week that if she is just getting some lab work done I do not mind letting my mother take her and I can stay at the office, but when she is getting chemo it is different.  Even though the IV will drip whether I am there or not, it just feels like I should be there.

Wife: The house and my husband are both being neglected.  Of course it doesn't help that AF showed up this week.  I hear grumblings about this from T but actually, the reason AF is here this week is because I adjusted my pills the week we went to NASCAR so that she would not be an unwelcomed guest in our tent.  So, you see, I cannot win.  We are short with each other. We are doing our same cleaning, mowing, feeding the dog, getting by in the day to day of things but it is a struggle this time more than when Azure was in the NICU.  Thinking back, I was working part-time hours then hoping to keep my vacation days to use as maternity leave when she came home.  Now, since we have my insurance I need to keep my hours up around 40 and instead of a baby who only sleeps and eats I have a toddler who doesn't want to eat, who wants to watch Elmo 24/7 (which I cannot allow) and who throws tantrums (and throws her glasses and throws her food and throws her toys, etc.).  It is just a whole different strain than it was the last time.  I have tried a couple of times to arrange dinner out together so we could have some alone time.  We enjoyed the food and the conversation but it felt like the date was one more thing to squeeze into our schedule.  NASCAR was awesome and I am very glad we went but we came back and jumped right back into the work week and it has been full tilt since.  We stayed up late (10:30!) the other night talking.  I think we were starved for a quiet uninterrupted conversation. (This could probably said for the parents of any toddler. I am not saying that all of our issues are due to Azure's cancer, it is just a part of our lives right now.)

 

Employee: I want to name this one Valued Employee.  I know they value my work and appreciate what I do...when I am there.  They miss me when I am gone and are glad to see me when I get back to the office, even if I was only gone a couple of hours. *sigh*  I love my job, I love the people I work with.  I laugh out loud every single day.  It can be stressful, especially now that we do not have a receptionist and I have to pick up the slack there too.  I enjoy it.  It is the perfect opportunity for a workaholic like myself.  But, if I am going to be completely honest, the workaholic label does not fit quite as well as responibility-sponge.  T pointed this out to me during our quiet conversation.  I take on the load to do everything that needs to be done when in fact it does not HAVE to be me that does it.  There are others in the office who could pitch in.  If Azure were not sick I would not think twice about working the extra hours and taking it all on myself and showing everyone what I am truly capable of.  But...she is sick and as mentioned above, she needs me.  I keep thinking back to the saying, "When you're laying on your death bed you will not wish you had spent more time at the office, you will wish you spent more time with your family".  This is true!  I know this is true!  It is just SO HARD to step back and leave what looks like a pile of things I did not do.  I cannot be 100% everywhere.  It just is not physically possible.  This frustrates. me.

 

Self: I need to exercise, lose weight and sleep.  I need stress reduction in the form of quiet time alone and when I can afford it, a massage or facial.  I need these things.  I am not getting them.  I am sacrificing myself in order to focus on the three items above.  It is a losing battle.

 

Married Working Mother I can handle.  Married Working Mother of a child with cancer is proving to be a challenge. Time to get back into problem-solving mode.