March for Babies

Thursday, November 17, 2011

World Prematurity Day//Bloggers Unite

World Prematurity Day // Bloggers Unite

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

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

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

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

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

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

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

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

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

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

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

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

3 comments:

Thalia said...

goodness me, what a lot you have all been through together. I do hope this new woman makes a huge difference for amanda.

How is Meow?

Mere said...

Meow is hanging in there, a bit threadbare these days, and being very brave when Amanda has to go to school and he is required to stay in her backpack. Thanks so much for asking!

Jenny said...

You have been thru a lot....as I have....so, I will keep you in my prayers.
Jenny
www.hearawhisperat.blogspot.com

(pls visit if you get the time:)