tag:blogger.com,1999:blog-71188022024-03-13T02:15:38.880-05:00Navy Blue Elephant TrunksLife is a journey. We've been through infertility, a micro-preemie in the NICU, a toddler with Cancer and now a young girl with Cerebral Palsy and ADHD.
I gotta ask...are we there yet?Unknownnoreply@blogger.comBlogger294125tag:blogger.com,1999:blog-7118802.post-73107136513187558632013-11-17T22:27:00.001-05:002013-11-17T22:27:42.788-05:00Live, Learn, Teach, Prevent<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheXDGGY4pcl-mtzqauAk7ZfVa6owIB68OQZPlDdP-s1lX819OAWpfcpeKUc3ZTnMTsKI8-eG_-OTzCwfmf9cuMRWT-PVQ1yNzVvpooTPmx1t4EXbBtjBrkJvGCbIPh00w0Vh8O9A/s640/blogger-image-900369559.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheXDGGY4pcl-mtzqauAk7ZfVa6owIB68OQZPlDdP-s1lX819OAWpfcpeKUc3ZTnMTsKI8-eG_-OTzCwfmf9cuMRWT-PVQ1yNzVvpooTPmx1t4EXbBtjBrkJvGCbIPh00w0Vh8O9A/s640/blogger-image-900369559.jpg"></a></div><div class="separator" style="clear: both;">On this day when. we recognize premature birth around the world I cannot help to count our blessings. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">We started out in a panic, I thought we would lose the baby, Tim thought he was losing us both. We made it through, not at all unscathed. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Then came the phone call wherein I had to tell my husband that he needed to come down to the hospital because our two-year-old had cancer and they had checked us into a room straight from the ultrasound when they found the grapefruit sized tumor in her liver. This, it turned out, was most likely caused by the nutritional supplements given in the NICU. We wondered which side of Karma we were on. Double wammy bad stuff but we again made it through. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">There are other lingering preemie-related issues we are still dealing with. Spastic Diplegia, a form of Cerebral Palsy which requires Amanda to sleep in night splints that stretch her muscles. These are uncomfortable and leave red mark on her skin. They haven't improved her range of motion but we haven't lost any either which is good enough at this point. She has also undergone extensive testing, both psychological and neurological to determine she is living with ADHD-C (combined inattentive and hyperactive) and struggles with Executive Functions (organizing thoughts, prioritizing steps to complete tasks, etc.) she also suffers from sensory issues which interfere with dressing, sitting still, etc. That being said, she is SO smart and a good student. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I am sure we are not yet finished discovering ways in which a premature birth will effect our daughter's life. Life will not be easy for her. Luckily, we know she is a fighter and resilient and somehow, continues to wind up with the best case scenario in bad situations. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Not everyone is so lucky. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Today is not about how bad we've had it (pretty bad, odds were against her coming home both from the NICU & from the cancer) but rather about pulling together to make it through the rough times and hopefully prevent these things from happening in the future. Within our pnuclear family this means Amanda will be an only child. This was not an easy decision or one made lightly. It meant changing my whole world view and long-term plans. On a global scale it means getting the word out about premature birth, signs & symptoms of preterm labor, maternal and fetal healthcare leading to PREVENTION. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I was lucky enough tonight to kiss my seven-year-old at bedtime and tell her I love her all the time, even when he is angry at me (which she was at the time) and I am so grateful I was able to do that. I feel badly she will struggle in this life because she didn't cause any of this. None of it was her fault. We are finding in medical records that it wasn't my fault either. I had good insurance and good prenatal care, more than most considering the fertility treatments, but when I went into premature labor I did not recognize the warning signs. If I had, maybe we would have gotten to the hospital sooner, maybe they could have stopped my labor, or at least given her some steroids to develop her lungs before she was born. Can you say Maternal Guilt? (In my defense, the hospital didn't recognize it as labor either until my water broke.)</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">So, I leave you with this, the signs of preterm labor. Study them. Share them with anyone of childbearing age. Learn and teach so as to prevent. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="http://www.marchofdimes.com/pregnancy/signs-and-symptoms-of-preterm-labor-and-what-to-do.aspx">http://www.marchofdimes.com/pregnancy/signs-and-symptoms-of-preterm-labor-and-what-to-do.aspx</a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">#PrematurityDay</div><div class="separator" style="clear: both;"><br></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7118802.post-25985200329319273902013-10-13T08:59:00.001-05:002013-10-13T08:59:51.495-05:00Room for Improvement<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhP5q59fmPQNvD29tJYmby7sGXgqMRoocXrNGThCSmMmHlxUuwXtb-T4mPuFjPbiZr1UZcbE6sV-Www0K2XprAZVN6SlluXuktaB7dcNgV3ExhW4baK89cFBgn9nmkreMVzELDjKA/s640/blogger-image-738843284.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhP5q59fmPQNvD29tJYmby7sGXgqMRoocXrNGThCSmMmHlxUuwXtb-T4mPuFjPbiZr1UZcbE6sV-Www0K2XprAZVN6SlluXuktaB7dcNgV3ExhW4baK89cFBgn9nmkreMVzELDjKA/s640/blogger-image-738843284.jpg"></a></div><div class="separator" style="clear: both;">Store bought green bean next to my home grown organic cucumber. Looking at the positive side, I have a huge opportunity to learn new things! :-/</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7118802.post-62556878674270241442013-06-19T11:20:00.001-05:002013-06-19T11:20:17.715-05:00Stay the Course<span class="Body">Last summer Amanda was seen for the
Spastic Diplegia Cerebral Palsy in her ankles. She has always had less
than normal range of motion in her ankles. The low side of "normal"
means that when your leg is straight, you can point your toes back
towards your nose (at the ankle, not the toe joints) and the angle of
your ankle would be around 15-degrees. Amanda has always ranged in the
5-10 range. We have done stretches, we have taken her to physical
therapy where they worked with her over and over to walk on flat feet
instead of up on her toes. The toe walking will not require medical intervention until/unless she were no longer able to put her heels all the way
down on the floor. This is not the case, she can walk with "flat feet"
when reminded. The school PT told us to give her verbal prompts in order
to accomplish this (nag her) and we decided this was not going to
happen. The kid hears enough nagging without being criticized for how
she walks...all.the.time. <br />Our concern has been, as she grows taller
the muscles and tendons could get tighter and the range of motion in her
ankles could get worse. This could lead to walking problems, knee, hip or back problems in her future could be avoided now if we stay on top of things. So, last summer we started using splints on her
as she slept at night. It took months to get them properly fitted
trying this material and then that then changing again to get the right
fit so the pressure wasn't too much on the top of her foot (it created
terrible red marks which lasted all day long) and they were very
uncomfortable for her. We finally got the right fit and have
steadily increased the tension on them to work our way up to a 4.5 out
of 7. The doctor today said, that even after growing an inch and a half
this past year she has not gotten any worse, though no better, in her
range of motion. He said if she HAD gotten worse (tighter) he would
recommend serial casting, literally a series of casts on her legs
pointing her toes higher and higher to the sky forcing the muscles in
her calves to stretch. Sounds perfect for an active 7-year-old in the
summer, huh? However, since she has grown and maintained her not normal
but not horrible angle he is willing to stay the course and watch how
she does with the expected growth spurt that occurs around age 7 or 8. <br />This
is good news as we continue to make payments on the thankfully not
useless splints we dutifully strap on each night and take off each
morning. Also, they still fit her after this year of growth so we won't
have to buy new ones to stay the course. *Whew!*</span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7118802.post-72432136932768062222013-05-26T13:32:00.001-05:002013-05-26T22:30:57.315-05:00"On Writing"Thinking about things that I enjoy and things that seem to come easily for me and things that would make me happy, I kept coming up with the same thing...writing. I am an Ok writer, not great. I aspire to be a Mary Roach or even a Julia (<span style="font-family: Helvetica; font-size: 15px; line-height: 19px; white-space: nowrap; -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); ">alittlepregnant.com</span>). Classy, intelligent and funny ladies. Hey, I said that's what I <i>aspire</i> to, I am certainly not there yet! My writing has a conversational tone which people seem to enjoy and I have been told I should write a book, but to be honest, I write for myself about things that concern me at the time. For years I have said that I do not write when I am happy which shows that writing is a form of therapy, of processing, of cathartic expression. It is selfish and self-absorbed and yet, I do love feedback on what I have written. <div>I miss blogging. I did it a lot when we were in the thick of infertility treatments and then going through the NICU. At the time I was blogging anonymously which gave me the freedom to say whatever I wanted as long as I didn't let the cat out of the bag about who I was or who might have been involved in a particular situation. Then I had to learn about a different type of blogging during Amanda's cancer treatments. I was factual and tried SO HARD to keep it all sounding upbeat, even when we were struggling SO HARD to keep putting one foot in front of the other. That blog was not anonymous so I felt very exposed. I know that I didn't share as much raw emotion just for that reason. I was facing enough (drama/trauma) without the fear of someone possibly criticizing something I may have said or done as a parent/employee/writer. I was too vulnerable at the time. </div><div>Then, as a way to support World Prematurity Awareness Day with Blog for Preemies, I went public with my original blog (after going through it post by post and editing anything that may implicate anyone else poorly in a public manner which seemed more innocent in the light of a pseudonym). I was told I was brave for "coming out of the closet" in that way. </div><div>Then too, with the increased popularity of Facebook and Twitter I actually started thinking in shorter form prose. How can I express (share) this idea/situation/event in as few words as possible? While it did wonders for my word economy, it lead me away from the writing and I have come to realize...I miss it. I like the feel of writing, I like the typing as my thoughts flow straight through my fingers and onto the screen. I miss re-reading what I just typed and thinking, "Yes, that sums it up very nicely". I miss the act of writing. So, maybe I should start writing again. Worst case scenario is that no one leaves me feedback. Best cast scenario is I get to clear my head. I think it will be good for me either way. </div><div><br></div><div>*Since this is about writing and partly inspired by the interview I read this morning with Stephen King who is far and away my favorite author (so versatile), I shall steal the title of this post from his memoir <i>On Writing. </i>SK writes 1500 words each morning, just like someone who would get up and run two miles every morning. Keep up the habit and good things are bound to happen. So, write on...</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7118802.post-56640285859044065172013-03-22T11:57:00.000-05:002013-03-22T11:57:05.950-05:00Found Myself in Pandora's BoxSo we have been asked to participate in a medical study on Hepatoblastoma the tumor Amanda had in her liver. (I just LOVED writing that in the past tense.)<br />
<br />
The majority of the questions were easy to answer, others I found myself at a loss. In the end I requested copies of our medical records from the Fertility God's office, my OB's office (more challenging since she retired and I moved to a regular old family medicine doc at a different office) and also the hospital where Amanda was born. This is the one I have been avoiding for...oh, about 7 years now.<br />
<br />
I have been wanting to ask, wanting to read, wanting questions answered and yet, I don't really want to know the answers. At first it was "What the FUCK happened?!?!?!?!?!?!?!!!!!!!!" and I thought as long as I had that attitude I might be perceived as just bit too litigious for their liking, which of course lead me to conspiracy theories of the medical records people editing out anything they thought I might not like.<br />
<br />
After that I needed to get past my own fears that the records would reveal that the preterm labor/birth were caused by something that I did wrong. No one on earth can out-guilt my own thoughts that I did this to my child. I wanted a baby so badly I took any drug they suggested might help me do that. I continued seeing my OB even after I felt she disregarded my thoughts and concerns because she was a family friend from way back. I had to keep working while Amanda was in the NICU so I didn't spend every waking hour at her bedside (which wouldn't have helped her in any way but at least I could say I was there.) I misunderstood her pediatrician regarding the "fullness" (lump) in her abdomen allowing the tumor to grow to the size of a large grapefruit before we revisited it and discovered it was actually lethal. Do I have guilt? Oh boy, do I have guilt.
What if the cancer turned out to be related to one of the treatments she received in the NICU, or possibly the fertility drugs I'd taken to conceive her in the first place?<br />
<br />
Hepatoblastoma is a rare form of cancer in children but it is more prevalent in preemies. They do not know yet whether it is related to low birth weight, immature liver cells, treatments received in the NICU or something else. That is what this study is looking into. But, a superficial look at things would suggest that the number of infertility treatments has increased in that time and the number of preemies has increased with the increase in fertility treatments which would then lead to more cancers related to those early births.
The number of Hepatoblastoma cases has DOUBLED in the last twenty years. Thank goodness they seem to have figured out a good treatment program for it, but still, who would to go through that if they didn't need to? Amanda was diagnosed at STAGE IV due to the advanced state of the tumor, her age and the fact that it had already metastasized in her lungs. I still believe her doctors were shocked at how well she responded to the treatments. It helps when your kid is a rock star like mine! If they can look back at her records and find a common factor with the other kids in the study maybe they can pinpoint a cause which may then lead them to a preventative measure in the future.<br />
<br />
So, with all this for the greater good of all mankind prompting me to finally ask the questions and see the answers...I still don't really want to know. I'll look and try to put my self-judgement aside but seriously, not looking forward to getting those reports in the mail. Mostly because, in essence, I DID do this. I'll just have to suck it up and take responsibility for my part. :-PUnknownnoreply@blogger.com0tag:blogger.com,1999:blog-7118802.post-83886454774148735372011-11-17T06:28:00.000-05:002011-11-17T06:30:03.457-05:00World Prematurity Day//Bloggers Unite<a href="http://www.bloggersunite.org/event/world-prematurity-day">World Prematurity Day // Bloggers Unite</a><br /><br />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? <br /><br />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. <br /><br />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). <br /><br />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. <br /><br />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. <br /><br />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!*<br /><br />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. <br /><br />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! <br /><br />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!*<br /><br />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. <br /><br />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. <br /><br />They say Amanda is a "Former Micro-Preemie" but I think that is something that will be with her all her days.Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-7118802.post-68116749629475028892011-04-26T12:33:00.001-05:002011-04-26T12:33:12.429-05:00And They Lived Happily Ever After...<div class=WordSection1><p class=MsoNormal>Well, maybe it isn't THAT good, but things are looking up. Amanda has been accepted into the Young-5s class at the school we were hoping for, which means we can stay at our current daycare. This is a MONUMENTAL load off of my shoulders. The thought of moving her daycare and then having her start school within a couple of months is just too many big changes too close together for my girl to handle. I know she would get used to the new routine but the behavioral backlash during the transitions would not be pretty. <o:p></o:p></p><p class=MsoNormal><o:p> </o:p></p><p class=MsoNormal>SO, good school and continued care from the people who already know and love her and will drive her to and from school means the world is a better place today. We'll be writing the new IEP in May and I believe the OT is now convinced she could use some classroom accommodations rather than an exit IEP. (Note that my word wasn't good enough, but a copy of the neurologist's report which said the same thing I said made an impression.)<o:p></o:p></p><p class=MsoNormal><o:p> </o:p></p><p class=MsoNormal>We found out the EEG came back "normal" with no signs of epilepsy. I have asked our pediatrician for a referral to the Pediatric Cerebral Palsy Therapy program at a local hospital. I have not heard back about this which I am taking to be good news. If she didn't agree with my asking for the referral (I called the referral desk, didn't speak to her directly about it) she would have called me to clarify what it is that I am looking for. The therapy program will encompass physical therapy, occupational therapy and speech with sensory integration inclusive in these other therapies. I am hoping the SPD therapy will provide a noticeable result in her behaviors and ADHD-C symptoms before school starts in the fall. <o:p></o:p></p><p class=MsoNormal><o:p> </o:p></p><p class=MsoNormal>I have been attempting to find a fish oil supplement that she would be willing to take. She is not able to take pills at this point so a liquid is my best bet as she would need to have 4-8 gummies at a time in order to get the recommended dose of fish oil. She is very picky about flavors and not great at brushing her teeth yet (another sensory issue at play) and the dentist recommended staying away from gummies as they tend to get stuck in and between teeth. This leaves the option of a liquid which we can mix into a drink or yogurt as the strong flavor will probably not win us a straight shooter. I did find Barleans brand has a Peach Mango Smoothie flavor which sounds perfect ...except I can't get it in town. I've read that the fish oils need to be continuously refrigerated in order to NOT taste like fish. I can order it from Amazon but that means it will not be refrigerated during shipping (and to be honest, I don't know that they are refrigerated at the warehouse either). The local health store said they have been trying to get it for a couple of weeks and can't get it. If only my daughter would tolerate lemon, orange or strawberry I would be perfectly set. Since she exists in order to make my life more difficult, she will not touch any of these flavors. There is one more local place I can try and then I may need to just cross my fingers, order it online and hope for the best in covering up the taste.<o:p></o:p></p><p class=MsoNormal><o:p> </o:p></p><p class=MsoNormal>Now that I have my brain half-way working again I have started jogging in an effort to train for my first 5K in a matter of three weeks. Not just my first race mind you, I have never run before with the exception of high school PE class. Not pretty. My legs are screaming at me and my lungs are launching major protests. But I declared I would do this for Make-A-Wish and I will follow through on that promise if it kills me...which it might. According to the Couch-to-5K program I should be able to run a full 2-1/4 miles at this point. I didn't get in 1/4 mile on Saturday before I gasped, "What the F*ck did I get myself into?" Then promptly stopped talking as it required too much oxygen.<o:p></o:p></p><p class=MsoNormal><o:p> </o:p></p><p class=MsoNormal>Wish me luck! <o:p></o:p></p><p class=MsoNormal><b><i><span style='font-size:14.0pt;color:#17365D'><o:p> </o:p></span></i></b></p><p class=MsoNormal><span style='font-family:"Comic Sans MS";color:#17365D'><a href="http://www.active.com/donate/makeawish2011/meredithswishrun">Meredith's Wish Run - May 14, 2011</a><o:p></o:p></span></p><p class=MsoNormal><span style='font-family:"Comic Sans MS";color:#17365D'><o:p> </o:p></span></p><p class=MsoNormal><o:p> </o:p></p></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7118802.post-22397187996297904712011-04-14T15:19:00.013-05:002011-04-15T14:28:34.077-05:00Careful What You Wish For<span style="font-weight:bold;">The Short Version</span><br /><br />• Two New Diagnoses<br /><br /> 1) Spastic Diplegia - A sub-classification of the most common form of <br /> Cerebral Palsy. <br /><br /> 2) ADHD-Combined type - Both inattention and hyperactivity/impulsivity<br /><br />• Mere FREAKS out<br /><br />• Mere slowly starts collecting herself again<br /><br /><br /><br /><br /><span style="font-weight:bold;">The Long Version</span><br /><br />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 <a href="http://www.alittlepregnant.com/alittlepregnant/2011/03/two-minutes-self-indulgence.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+alittlepregnant+%28a+little+pregnant%29&utm_content=Google+Reader">mentioned</a> something the <a href="http://www.alittlepregnant.com/alittlepregnant/2011/04/a-crowbar.html#comments">other day</a> 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.<br /><br />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. <br /><br />We had the neuro appointment at the end of March. The neurologist was a friendly bright engaging young woman (loved her!) who talked <span style="font-style:italic;">to</span> 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.<br /><br />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.<br /><br />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.<br /> <br />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. <br /><br />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?<br /><br /> 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.<br /><br />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.<br /><br />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. <br /><br />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.<br /><br />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.<br /> <br />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. <br />I want to cry. <br />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? <br />Yes...But...this is the path we are on, so we need to keep going. Can't really turn back now can we?<br /> <br />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. <br /><br />This is all a very verbal outpouring of what has been going through my head lately. Pictorially it would look like <a href="http://www.bestchurchofgod.org/.god/uploads/Image/ArticlesGeneral/Kathy/woman_crying2.jpg">this</a>. 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*Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-7118802.post-20080334806565537482011-02-17T06:00:00.002-05:002011-02-17T06:02:33.038-05:00Happy Birthday Sweet GirlCelebrating <a href="http://mandameow.blogspot.com/2011/02/happy-birthday-sweet-girl.html">today</a> what I could not enjoy 5 years ago.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7118802.post-56671279484903906132010-12-13T13:38:00.001-05:002010-12-13T13:38:53.993-05:00Dr. Google Follow Up...<div class=WordSection1><p class=MsoNormal><span style='font-size:12.0pt;font-family:"Tahoma","sans-serif";color:#17365D'>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. <o:p></o:p></span></p><p class=MsoNormal><span style='font-size:12.0pt;font-family:"Tahoma","sans-serif";color:#17365D'>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. <o:p></o:p></span></p><p class=MsoNormal><span style='font-size:12.0pt;font-family:"Tahoma","sans-serif";color:#17365D'>I am ok with that.<o:p></o:p></span></p><p class=MsoNormal><span style='font-size:12.0pt;font-family:"Tahoma","sans-serif";color:#17365D'>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. <o:p></o:p></span></p><p class=MsoNormal><span style='font-size:12.0pt;font-family:"Tahoma","sans-serif";color:#17365D'>Keeping my fingers crossed and hoping for the best. <o:p></o:p></span></p><p class=MsoNormal><span style='font-size:12.0pt;font-family:"Tahoma","sans-serif";color:#17365D'><o:p> </o:p></span></p><p class=MsoNormal><b><i><span style='font-size:14.0pt;color:#17365D'><o:p> </o:p></span></i></b></p><p class=MsoNormal><span style='font-family:"Comic Sans MS";color:#17365D'><o:p> </o:p></span></p><p class=MsoNormal><o:p> </o:p></p></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7118802.post-57812453965715184472010-12-08T11:20:00.002-05:002010-12-08T11:26:17.480-05:00Dear Dr. Google,My child has been referred to a neurologist to be tested for Cerebral Palsy. Please advise. I know nothing.<br /><br />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.<br /><br />Crap.Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-7118802.post-36076306390583642152010-11-15T12:47:00.015-05:002010-11-17T06:01:22.288-05:00The Girl Who Lived<em>November is Prematurity Awareness Month. As part of that cause, I am <br /> participating in the Bloggers Unite Fight for Preemies event to raise <br /> awareness and hopefully support for our dear friends a the March of Dimes.</em><br /><br />*************************************************<br />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!<br /><br />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 <a href="http://navyblueelephanttrunks.blogspot.com/2006/02/so-what-did-you-do-this-weekend.html">"natural birth"</a> 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.)<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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. <br /><br />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.<br /><br />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.<br /><br />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 <a href="www.marchforbabies.org/AmandaRileySoddy">March for Babies</a>). (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.<br /><br />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? <br /><br />But she lived.<br /><br />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.<br /><br />She suffered, we suffered, but again, she lived.<br /><br />The research that has been done by the <a href="www.marchofdimes.com/fightforpreemies">March of Dimes</a> 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? <strong>Preventing the premature births in the first place.</strong> 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. <br /><br />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.<br /><br />I will continue to support the <a href="www.marchofdimes.com/fightforpreemies">March of Dimes</a> in hopes that other babies, other families, will not have to suffer the way that we did. I will write for <a href="http://www.bloggersunite.org/event/fight-for-preemies">BloggersUnite</a> 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!)<br /><br />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.Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-7118802.post-63120823285827838162010-10-12T11:09:00.002-05:002010-10-12T11:22:27.506-05:00Bad Hair Day<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtvjK1RnvgEipf-g9Z0SJdDPARuI_d2Lyvby0x8jsQg4P3nAsdUlaVOxjXj8czrRaOlUFMoG_Z-E4I_kCP9WamCiYz7fvKGjCpRQP8FvhYMPmY-65FCYI52aOm9yeYIrbQr_pZWg/s1600/Monica-and-Chandler-The-One-in-Barbados-Part-Two-9-24-monica-and-chandler-9623739-720-480.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtvjK1RnvgEipf-g9Z0SJdDPARuI_d2Lyvby0x8jsQg4P3nAsdUlaVOxjXj8czrRaOlUFMoG_Z-E4I_kCP9WamCiYz7fvKGjCpRQP8FvhYMPmY-65FCYI52aOm9yeYIrbQr_pZWg/s320/Monica-and-Chandler-The-One-in-Barbados-Part-Two-9-24-monica-and-chandler-9623739-720-480.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5527195099956088690" /></a><br /> <p class=MsoNormal> 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 <i>Friends</i> when they went to Barbados! <br /><br />If only I had an umbrella drinkUnknownnoreply@blogger.com0tag:blogger.com,1999:blog-7118802.post-78796776173151849052010-07-24T21:02:00.002-05:002010-07-24T21:18:27.180-05:00"Traumatic Birth"So I left a comment on <a href="http://birthtraumatruths.wordpress.com/">this site</a> in reference to my own birth experience and how I felt about it in terms of "trauma". It went something (exactly) like this"<br /> <br /><em>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.<br />“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.<br />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.<br />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.<br />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.</em><br /><br />What say you? Was your birthing experience "traumatic"? What makes you think so (whether you answered yes or no)? <br /><br />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. <br /><br />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? <br /><br />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? <br /><br />I don't know.Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7118802.post-65565455784572943972010-07-22T12:40:00.001-05:002010-07-22T12:40:40.120-05:00WAM 300: 2010<div class=Section1> <p class=MsoNormal>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: <a href="http://dev2.magicoast.com/server/MakeAWish">WAM live messages</a> . 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 <a href="http://www.wishmich.org/Page.aspx?pid=759&frtid=11942">Carbon & Tux Team Page</a> .<o:p></o:p></p> <p class=MsoNormal><o:p> </o:p></p> <p class=MsoNormal>I promise to post specifically about our trip to Sesame Place as soon as I have a spare moment to get it typed up! <o:p></o:p></p> <p class=MsoNormal><o:p> </o:p></p> <p class=MsoNormal>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. <o:p></o:p></p> <p class=MsoNormal><o:p> </o:p></p> <p class=MsoNormal><span style='font-size:14.0pt;font-family:"Comic Sans MS"'>Mere :0)<o:p></o:p></span></p> <p class=MsoNormal><span style='font-size:11.0pt;color:#002060'><o:p> </o:p></span></p> <p class=MsoNormal><o:p> </o:p></p> </div> Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7118802.post-14361699928751112502010-06-03T11:35:00.003-05:002010-06-03T11:46:11.039-05:00We'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.<br /><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlphIllL3vkSselDu1zBtbMtCTwYDK-6A1CYXwZxf6LPK7hFfwY0FRaBkI-AP0OSHlGlJVMl97G1Tn4Q4tjuZIuCLsW0eDGl60eMJQbSZ22RppmObVzo3V_byOcwv_mtc8aXt7OQ/s1600/Home+DSC01381.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlphIllL3vkSselDu1zBtbMtCTwYDK-6A1CYXwZxf6LPK7hFfwY0FRaBkI-AP0OSHlGlJVMl97G1Tn4Q4tjuZIuCLsW0eDGl60eMJQbSZ22RppmObVzo3V_byOcwv_mtc8aXt7OQ/s320/Home+DSC01381.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5478588588681581618" /></a><br />105 Days Old!<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAzypDYZEMYvghyphenhyphen5ku-4qHIu8MPBaHiT4okcDJhBTJkeRGfSwcfFpDa-JLPoIuuwO072eZhaB3nECkzxoc82Rq3dcw5uuhkkynbgCUiysbhk7cp9O6lE5OXlyiHHPx8TNu63MBjg/s1600/img252.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAzypDYZEMYvghyphenhyphen5ku-4qHIu8MPBaHiT4okcDJhBTJkeRGfSwcfFpDa-JLPoIuuwO072eZhaB3nECkzxoc82Rq3dcw5uuhkkynbgCUiysbhk7cp9O6lE5OXlyiHHPx8TNu63MBjg/s320/img252.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5478588594602015874" /></a><br />4 Years Old!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7118802.post-5538291327365795452010-04-09T19:23:00.001-05:002010-04-09T19:23:42.665-05:00The roof, the roof, the roof...is a work in progress.<p class="mobile-photo"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq9VQ8fxXORHQrQk-8XyCOIcnsP-U8CenoZgt2kUaPOm9HGxqAw515YJM-WbrOV30w3xnmEftrscINp2LuUQMieej2uKYcnzIVCm0gbZIPND-3QY2T9st9z4ptjukhhE1WTHR-mA/s1600/img186-722666.jpg"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq9VQ8fxXORHQrQk-8XyCOIcnsP-U8CenoZgt2kUaPOm9HGxqAw515YJM-WbrOV30w3xnmEftrscINp2LuUQMieej2uKYcnzIVCm0gbZIPND-3QY2T9st9z4ptjukhhE1WTHR-mA/s320/img186-722666.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5458297937807921266" /></a></p>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7118802.post-9372482335366507202010-03-13T19:34:00.001-05:002010-03-13T19:34:05.369-05:00Big Kid Underpants !!! *Cringe*Let the games begin!<br>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?)<br>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? <br>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.<br>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.<br>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.<br>YIKES!Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7118802.post-29794174222488301122010-01-24T10:07:00.001-05:002010-01-24T10:07:33.693-05:00We have PIG TAILS!!!!<p class="mobile-photo"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDxouino3Ow3-4xWSRWh4M4PrSdDHnH9J7YDRNkucnxte7Z47gxBzmpbAzsQZ3TqoxlucYi-DUoLWj-Skb0A4wg3tkmV5Ybo4vAkFwJreHiRQQ4efcASYmXUko727DVwZxteVuVw/s1600-h/img124-753694.jpg"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDxouino3Ow3-4xWSRWh4M4PrSdDHnH9J7YDRNkucnxte7Z47gxBzmpbAzsQZ3TqoxlucYi-DUoLWj-Skb0A4wg3tkmV5Ybo4vAkFwJreHiRQQ4efcASYmXUko727DVwZxteVuVw/s320/img124-753694.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5430323233099810722" /></a></p>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7118802.post-89675910091482606162010-01-14T15:22:00.001-05:002010-01-14T15:22:02.132-05:00All Kinds of Karma on the 12thWe seem to have started out 2010 with a bang! After two straight weeks of<br>feverishly cleaning, packing and painting our house, we met with two<br>realtors who basically told us not to bother trying to sell right now as the<br>foreclosures in our area were driving down home prices and we really can't<br>get what we would like (need) for the house. SO, the new plan is to wait and<br>see what happens with the housing market in the next year or two and see if<br>in that time we can be ready to cut and run when the time is right. We do<br>want to buy/build a new home (I have been daydreaming about vaulted ceilings<br>and walk-in closets...and a dishwasher...and a garage I can park in) but the<br>time is not right for that just yet. <p> <p>Amanda had her check up at the oncology clinic on Monday where she<br>thoroughly impressed her oncologist by knowing each of the numbers and<br>letters drawn on a piece of paper and reciting scenes from the latest<br>Snoopy/Super Why/Clifford episodes she'd seen. The doctor said for a<br>24-weeker Amanda is "EXCEPTIONAL". We knew that of course, but it is nice to<br>hear it from an objective professional. :0) The doctor also told her that if<br>she would use the toilet she would send her a very special wrapped prize in<br>the mail. Amanda changed the subject. The potty is a bit taboo with her<br>right now. <p> <p>On Tuesday Amanda had her CT scan and hearing screening. These occur every 3<br>months to ensure if the cancer comes back we catch it good and early. If it<br>were to come back, it is most likely to happen in the first two years<br>following treatment. As we are just past the one year mark we are<br>tentatively sighing half a breath of relief. (This sounds a bit like an<br>optimistic whimper if you listen close enough.) The scans were completely<br>clear and she passed the hearing screening again with flying colors. (They<br>check her ears due to the one chemo drug known to cause hearing loss in the<br>high frequencies. So far, no deterioration.) The blood work for the cancer<br>marker (AFP) is supposed to be below 8. Hers was in the hundreds of<br>thousands upon diagnosis, it is currently 2.4. (YAY!!!!) We will now wait<br>four months before she has another scan and if that is also clear we will go<br>to every six months. One step closer to the path that will eventually lead<br>us out of the woods. (What exactly does out of the woods look like again?)<p> <p>Tuesday morning, in the Envoy, on the way to the hospital for the scans, we<br>were rear ended on the highway. Running late and trying to decide how bad<br>the hit really was I knew Amanda was not hurt when she piped up, "Wow, that<br>was a BIG BUMP!" I looked in the rearview mirror to see a dark colored sedan<br>behind us with a man wearing a baseball cap at the wheel. I debated for a<br>few seconds and, angry that we would be late and probably miss the scan all<br>together, I pulled off onto the shoulder. I again looked in the rearview and<br>the car was gone, he'd passed me and accelerated down the off ramp. I<br>checked my mirrors again and, as Sherriff Roscoe P. Coltrane used to say, I<br>was in "Hot Pursuit"! I followed the car and got the plate number, then<br>turned down the road towards the hospital. I checked the bumper when I<br>pulled into my parking space. The bumper was cracked, scraped with paint and<br>a piece of the other car's headlight was stuck in my tow hitch connector.<br>The guy should consider himself lucky we didn't have the trailer ball in at<br>the time. Anyway, after getting through the scans (the most traumatic part<br>was when she FREAKED out at seeing the CT machine, they have assured me we<br>can give her something for anxiety next time) and then finally getting to<br>work that afternoon, I found out I had to take the truck up to the State<br>Police Post to file an accident report. I gave the information and the plate<br>number. They would have to send a trooper to track down the car. I received<br>the call this afternoon that the "suspect" is not living at either address<br>that came up under that plate number and his license is suspended. This<br>leads me to believe he probably does not have valid insurance either. Crap!<br>I can only hope that Karma will come back around to this guy and I hope he<br>learns he hit a mother taking her 3-year-old daughter to the hospital!!!!!<br>*Guilt-Voo-Doo-Guilt-Voo-Doo* Also, thank goodness the damage to my vehicle<br>is minor and neither Amanda or I were hurt in any way. <p> <p>Tuesday night thinking about my bumper and the fact we have half of a house<br>packed and are now not moving and we did not yet have the results of<br>Amanda's scans I decided that I would trade the stupid bumper for negative<br>scan results. Putting everything back into perspective. *sigh* It also<br>occurred to me that the one other real car accident I have been in was on<br>October 12, 2005. I was six weeks pregnant and T-boned by an elderly couple<br>who tried to blame everything on me for fear the man would lose his<br>license...which wasn't valid anyway. The cop let them off and I didn't even<br>play the pregnancy card! (To this day I am convinced that the anxiety about<br>that accident and the stress it caused lead to the congenital<br>brain/nerve/muscle defect in Amanda's eye.)<p> <p>So, things should be calming down now as the year progresses, but I may not<br>drive on the 12th of the month anymore. I did hear this morning they will<br>now have rickshaws downtown, maybe I can ride one of those instead.<p> <p>Mere :0)Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7118802.post-73608414585282963912010-01-04T15:01:00.001-05:002010-01-04T15:01:42.277-05:00Because We Don't Do NormalWe are meeting with realtors this weekend. We will pick the one we think<br>will sell our house the quickest. We are talking to builders. WE.ARE.CRAZY.<br>We have two trips to NASCAR and a trip to Sesame Place scheduled for this<br>summer. <p> <p>Hi 2010, I think you will not last long.<p> <p>Mere :0)Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7118802.post-89325902000387652342009-12-22T21:01:00.001-05:002009-12-22T21:01:47.186-05:00Santa-cycling<p class="mobile-photo"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNNRMLd1HCcPELAIoVqUh6L46hMP206_zoLjj1Vxlu_so2aOYFD_NOGsblNVXdetOGkaZxpdrNZDkfQ2PLuHywiWgVsIgYezKmpLHDMLmnodmeVR-AL99vaOhLc4AjEe-VWMFScg/s1600-h/img091-707187.jpg"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNNRMLd1HCcPELAIoVqUh6L46hMP206_zoLjj1Vxlu_so2aOYFD_NOGsblNVXdetOGkaZxpdrNZDkfQ2PLuHywiWgVsIgYezKmpLHDMLmnodmeVR-AL99vaOhLc4AjEe-VWMFScg/s320/img091-707187.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5418246016017091938" /></a></p>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.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7118802.post-38104680379934730722009-12-05T11:54:00.001-05:002009-12-05T11:54:15.151-05:00Art Prize 2010 look out!<p class="mobile-photo"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQDdC5G7e9FvSq-iTwnoyIynHT_yXmIZlkFbA5EmPOjLsYtY3UXkrz8jyA8RJ7s_KlVOSRUppcTMoQ0azL-DGI5ab2iUw_DSew8iML7HgDGgaEmxAs0W8ZL8zXfotXI0bUMeky5g/s1600-h/img035-755152.jpg"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQDdC5G7e9FvSq-iTwnoyIynHT_yXmIZlkFbA5EmPOjLsYtY3UXkrz8jyA8RJ7s_KlVOSRUppcTMoQ0azL-DGI5ab2iUw_DSew8iML7HgDGgaEmxAs0W8ZL8zXfotXI0bUMeky5g/s320/img035-755152.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5411796470752587458" /></a></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7118802.post-73858410089589129822009-12-03T14:41:00.001-05:002009-12-03T14:41:26.471-05:00Aaaaaand Here We AreThere is simply too much to put into one post. See<br><a href="http://www.mandameow.blogspot.com">www.mandameow.blogspot.com</a> for the story of Azure's cancer journey leading<br>us up to this point.<p>She is healthy.<p>She is HIGHLY ENERGETIC (!!!!!)<p>She is and always will be amazing.<p>Azure/Amanda<br>Blue/Meredith <p>Nice to meet you. :0)Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-7118802.post-82133671966719475732009-11-17T00:49:00.004-05:002009-11-17T01:05:54.711-05:00Vampires Strike Close to HomeI 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. <br />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.<br />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. <br />*sigh* I think I need to go back to simple fun books like the Harry Potter series or Anne of Green Gables or something.Unknownnoreply@blogger.com3