more of my babies

six-month-old sweetie

I

love him

to

pieces!

this could be said of any parent of a special needs child

Parents of special needs kids get so fed up with having to deal with people who may not be uncaring but simply don't take the extra moment to understand. We are connected to our children in ways that other parents cannot understand. We know without anything being said just what is needed at any given moment. We learn to anticipate what will happen next. We become educated in the legal, medical, and government arenas more than some people who have degrees in those fields. We learn to fight the fight and go into battle with a smile on our faces because we have to not because we want to. We learned the hard way just what must be sacrificed in order to get the care and attention our children need. We learned to give more of ourselves to that child than we would ever conceive of giving to another human being. We not only live it, eat it, sleep it, we also dream it.

Our lives are consumed by the care of our children. Our lives don't exist except for the care of our children. Everything we do revolves around what may be needed next for that child. We have been humbled, humiliated, felt guilty, made ashamed, brought to the point of begging at times, made angry, made determined, driven to the point of desperation, all for the sake of our children. We have sat in hospitals for days, weeks, months praying that our child makes it one more day, praying that our child lives long enough to know how much we love them, stood the onslaught of surgeries that could be life threatening, procedures that could make the situation worse, been through treatments that would make a grown man cringe, all in an attempt to make our children better. We have died a little inside every time our child cries from the pain of all these things. We have dispensed more medication than a pharmacy could hold. We have tried every crazy experiment, every suggestion made, every piece of equipment, every new medication, every strange idea on the hope that it might work. We have dealt with quacks, con-men, inexperienced people, uncaring individuals, rudeness, and cruelty toward our children. We have lost everything, sold everything, traded everything in the pursuit of help for our children. We have given up friendships, family, relationships, and marriages all for our children. We have other children that have given up parts of their lives for this child. Children who never complain while they do without so this child may have something needed.

We have learned to be realistic people. We know how bad the situation can get and that we may lose our children before their time yet we hope for that one cure that will make it all go away and give us our lives back. We hope that we can help another parent or people in the future by sharing our ideas, thoughts, angst, miseries, hopes and dreams. We have been made strong by the honor of being in the presence of a child with the courage to face more needles, more doctors, more surgeries, more treatments and procedures with a smile on their face. We have stood strong when our children have lost the battle and gone before their time. We say we are okay all the time when inside we are struggling to make it one more day. We know the potential our children have, we see their abilities as well as their limitations when they go through the procedures, treatments, surgeries, and struggle to accomplish even the smallest tasks. We are made strong by seeing the courage, determination and – most of – the hope in that child’s face every day. We do this EVERY SINGLE DAY of our lives. So PLEASE do not treat us as if we do not know what we are talking about. We have learned to face down worse tragedies, more complicated messes, and deal with more situations than you can imagine. We have been bent, sometimes broken, medicated, treated, depressed, angry, sad, and most of all a little fearful of the future. We have slayed more dragons, conquered more worlds, invented more items, discovered more truths, and all for a smile when that child is happy. We are diplomats, advocates, fighters, unlicensed doctors, therapists, surgeons, nurses. We are a formidable force to be dealt with when it comes to our children. We have neglected our spouses, other children, housework, jobs, friends, family, society, and our own health because we have been busy in the pursuit of a better life for our children. So do not think that we are incompetent – instead remember that we are soldiers in the battle for a better life. We are more focused on which battles to pursue. Not for ourselves but for a person who cannot do it for themselves. So listen to us when we speak because we know what we are talking about. Don’t talk down to us, respect the fact that we are caregivers of the most special people in the world. We have an honor you will hopefully never receive, we earned it the hardest way possible, and we carry that badge of honor with us in every single thing we do, every word we speak, and every action we take.

~Borrowed from post on a blog we follow, credited as "so perfectly written by Candace Barnes - A Cerebral Palsy Mom"

Christmas

My babies.

This is the best picture I could come up with. Crusty noses, dirty faces and all. Poor kids were tired from the 9+ hours in the car over the last four days.

Merry Christmas from our zoo to yours!

everyone has the sniffles

There's nothing like Christmas with sick kids. Well, this is a first, but it still stinks! I tell you, I hate that my kids are passing germs left and right. I liked it much better when my kids were never sick, but I guess we had to leave our bubble at some point. Rhys had Botox done again Monday and was nauseous and puking all day yesterday. He had no fever so my first thought was that it was related to the sedation. Then I second guessed myself and thought maybe he had a bug. He was acting exactly as he did from the sedation with his MRI, and was more or less dry heaving by the end of the day because his stomach was completely empty. I think we decided it wasn't related to the versed, but instead the Botox. His lovely doctor called him in an Rx for the nausea yesterday afternoon. One dose and ten minutes later he was perfect. He woke up great this morning and was good all day long, no meds necessary. He had no problems with his first round of Botox, and he didn't get nearly as many this time so I am wondering what happened. Hopefully we can control it with the nausea meds next time if he reacts badly again. Other than that he has a cough and drainage. Zoe has a runny nose, but is otherwise fine, and my poor little Beckett is also coughing with drainage. If Zoe doesn't keep her grubby little fingers out of his mouth (and sippy cup and toy kitchen spatula) when my back is turned I'm going to have to tape mittens on her hands!

Rhys's tricycle

please vote!

I never ask anyone to do this, but here is my exception. Several weeks ago this couple was featured on the national news. Maybe you saw it. If not, there is a news clip on the link below. They offer modified tricycles for special needs kids who need a little extra help. They operate only on donations, and each tricycle is provided to children free of charge. This man and wife donate their time for this effort. The lady's name is Connie Hankins. And I just had a conversation with her, during which she asked if I'd go to this site and vote for her to win a new car. Yes, a new car. She was nominated by her daughter and she is currently in second place. I told her I'd do even better and I'd post it to Facebook and my blog. It takes about two minutes, because you have to register, but please take the time to go to the page and vote! You can vote once a day through the end of the month I believe, and for your vote to count you must vote for both an individual and a non-profit. I do not know these people personally, but as the mom of a special needs kid I very much appreciate what they're doing.

Link to news story

Vote HERE!

chattering like a magpie

Zoe is full of things to say.

Here's what we hear around here these days...

momma - "maa-ma"

dad - "dah da"

Nonna (grandmother) - "nonna"

Rhys - "wees"

baby - "baby"

ball - "ba"

water - "wa-wa"

wash - "wa-wash"

please - "pease"

cracker - "cacker"

truck - "cuck"

car - "car"

Dora - "orah"

"me" - when she wants something for herself

she signs "please" and "more"

well baby visits

Rhys and Beckett just has their 3 year (yes, we're a little late) and 4 month well baby check-ups, respectively. Surprisingly, Rhys looks like he's creeping up the growth charts. He's almost always been on the growth charts, just on the short end, but based on height/weight this time they say he's at the 75th percentile. I don't trust doctor's office measurements one hundred percent, but they're usually close to what the very meticulous nutritionist got when she'd measure and weigh. Anyway, quite an accomplishment if I do say so myself. It isn't easy keeping this kid fed properly. In fact, it's downright stressful at times.

Beckett is 50th percentile for height and weight and looks great. I'm trying to nix is desire to eat every three hours. He will go up to five hours between eating, which is great, but that is probably only about one third of the time and he's old enough to go that long all the time. He is doing more at this age than what I remember Zoe doing. Of course I've slept many times since then and also been pregnant, so maybe I am not remembering correctly. His swing went kaput a few weeks ago and I didn't let myself buy a new one because I knew he was at the age he needed to more action, so buying a swing would have only been easy street for me.

MRI/neuro visit

Rhys had an MRI last week... the one the neurologist mentioned way back in April. I was a little nervous about the anesthesia for the test, given the reaction Rhys had after his adenoids were removed. I'm still not sure if Rhys's increased oxygen needs were related to the actual surgery, the drugs they used to knock him out, or possibly the intubation, so I was really hoping he didn't have the same reaction after the MRI. I expressed my concerns to the anesthesia team, but (obviously) they still had to sedate him. They did explain that they don't actually use a breathing tube and instead do something just at the back of the mouth to help keep air moving. Other than being a total grouch for two days he did great with it all.

Today was our follow up with the neurologist. After comparing the first images (from when Rhys was in the NICU) to this MRI the neurologist is comfortable knowing that Rhys's damage was related to his prematurity and is not progressive. Not that we were worried really, but any brain damage can cause things like seizures, etc. And depending on where the damage is located, and what the scar tissue looks like, they can get a good idea of who may be more at risk for these other issues. As of now Rhys is not at risk and other than a yearly follow up we should be good. The only interesting thing that the doctor did find was where damage had occurred.

Rhys's brain bleed was on the left side of his brain. On the very first head ultrasound, done in the NICU when he was only a few days old showed, everything was normal. The second ultrasound is what revealed the brain bleed. All the damage Rhys has now is related to that event three years ago. However, in addition to damaged tissue on the left side of his brain, Rhys also has damage on the right side of his brain. Again, based on the scar tissue the doctor can tell it isn't from a recent event. So, the doctor was a little perplexed given that Rhys was initially diagnosed with only a grade III brain bleed on his left side. He did have an MRI in the NICU right before he was discharged, and that study was supposed to be delivered to our doctor several months ago, but we only viewed the old head ultrasounds today which is something entirely different. I meant to ask about that first MRI, but we'd had a very long day and I was running very late to let Courtney leave and I just forgot to ask about it. Regardless, we got a good report! And even though he can't really give us any insight into what the future may hold for Rhys he is very optimistic given Rhys's behavior and current abilities and just told us to keep trying as hard as we can right now because it will pay off in the long run. We've been told a million times that these kids' brains develop entirely differently than an average baby, and reroute pathways around the damaged areas.

Incidentally, the doctor and all (four) of his medical students got a huge kick out of Rhys constantly telling them "all done". He was giving high fives and even got a little upset when the medical students walked out of the exam room. He's quite the charmer when he wants to be.