Thursday, December 27, 2012

Merry Christmas

Our family of five on Christmas Eve

My extended family - all 17 of us.

Addie crawling over to MeMaw as she read the story of Christ's birth from the family bible.

Helping Aunt Missy hand out gifts

Cousin Jared showing her how to use her new popper pusher toy

Trying to get her to sit still in front of the tree for a pic....  practically impossible.

My 3 babies!

Trying on Uncle Jay's glasses

Checking out MeMaw's goodies

Finally hung my camera on the tree to entice her to stand still.

The wonderment of a child 

Ready for bed at 8am. "Goodnight Bubba."

Jack getting cookies for Santa

Addie up at midnight and ready to play s'more.

Santa gifts plus gifts from Adam's family - all ready for the kids to wake up.


Happy Jack

A very Merry Christmas morning

Playing with my camera instead of toys

Stockings for all 8 grandkids. My 3 are the last 3. :)

Merry Christmas!

Monday, December 17, 2012

Italy v. Holland

There aren't many special needs parents out there that haven't read or at least heard about Holland. Holland is the place we all end up when we get off the plane... into the world of a child with special needs, when we thought we were traveling to Italy. We all thought we were going to  get a typical child... and instead we get a child that is different than what we expected. We get a child that is equally wonderful but not what we had prepared for... or researched. And the poem (though really not a poem per se) talks about how we eventually will get used to Holland but will always wonder what would have happened if we, indeed, landed in Italy. (read a copy if you are interested in more than my awkwardly paraphrased version here )

I, too, read this essay when pregnant with Addie. I have since developed a soft spot for tulips and quit reading any of the travel guides for a typical child. But a funny thing happened on the way to Holland -- at least, for me.

I started to realize that none of my children are Italy. Yes, I was blessed with two healthy children. Yes, I had the fortune to deliver my boys and have them room in. I didn't have to prepare for separation from them in their first first days of life, I didn't have to use a mechanical cow I called Bessie to provide them with breast milk for nourishment. I didn't have to sign consent for them to have brain surgery on their first day of life. I didn't have to leave them at the hospital when I was released to go home. I am not saying that I was not blessed to have two "typical" birth experiences, because I was. And it is my sincere hope that every parent would experience that part of  'Italy' at some point. 

But to say that I have ended up in this magical place that I had planned for my whole life, that it's turned out exactly like what I had meticulously planned... well that would be a lie. 

You see, no child is alike. No parent's destination is the same. No one can prepare for what their children will become. Yes, some children may follow this mythical ideal path of perfect behavior, attendance, grades, hair, etc. They may marry the quarterback of the college football team on their way to Harvard Med.  But to say that every child... every child ends up in either one of two places...
that's just not how it works. 

I have three very different children. And yes one of them is considered special needs. But I wouldn't put the other two firmly in the Italy category. On the flip side, I hesitate to put Addie in the Holland category either. Yes, she has hydrocephalus and seizures, and yes she has more doctor's appointments than most kids, but she's developmentally typical for her age. Could she develop more delays as she ages? Of course... but what child couldn't?

Are the kids that suffer TBI when they are 3 years old from being run over by a car firmly in the Holland category? Not in my eyes, they aren't. Are the kids that are in general education curriculum but have a diagnosis of ADD or speech issues only firmly in Italy?


Why do we try to lump children into categories? 

My children, I have decided, are from France, Germany and Norway. And that's ok.

And maybe those aren't places I set out to go. Maybe those aren't places anyone sets out to go. Maybe there are people that want to go to Italy and actually do arrive in Italy, and that's ok. Maybe there are people that didn't plan where they were going, so they would know only when they arrived where they were. 

I guess my point is this - no child, no matter their diagnosis, is the same. Every newly diagnosed hydro mom I talk to (and yes I did the same thing) wants to know what my child will be like. And there are no answers to that. No hydro child is the same. But guess what? NO CHILD is the same. I couldn't have told myself at 23 years old what Grayson would be like, and I couldn't have known or predicted Jack's abilities either. 

None of us know what or where we are going to end up. And maybe we should stop trying to predict it. Maybe we should just enjoy the journey. And we'll know where we end up once we get there.

Life is short. Children are precious. Love is the most important thing. 

Holland v Italy?

Does it really matter?

I don't think there are many parents out there, at least not one that would bother to contemplate these things in the first place, that would say it matters. We LOVE our children. All of them. I love my special needs child as much as I love my gifted child. I love my child that has speech issues as much as my child that has ADD. I love them. They are mine. I didn't go to Italy... I didn't go to Holland. I didn't go anywhere but where I was meant to be. And we should all take comfort in that. 

Thursday, December 13, 2012

Appointments and Seizures, oh my!

I'm happy to say Addie had her last (scheduled) doctors appointment of 2012 yesterday. We've seen the eye doc twice, neurologist, neurosurgeon, ent, physical rehab and pediatrician once and the orthotist twice all since October. Whew. Glad to be done for a while.

The pediatrician was thrilled with Miss Addie. She said she's the most amazing (medically) thing she's ever seen. That she is just like a typical 18 mth old. Praise God! I knew she was doing well but hearing that from our pedi was awesome!!

Now if we can just figure out these pesky things called seizures. :( Addie had another seizure on Friday the 7th. Just like the last one. In her sleep, before awakening. I heard her through the baby monitor and asked Jack to go talk to her until I could come get her. He came back and said "mom, somethings wrong with Addie. She's going sniff sniff sniff sniff," I immediately knew what was wrong and ran into her room. Saw her convulsing and went for the diastat pen. I knew based on how she had been discovered that it had already been 3 mins so I immediately picked her up and put her on her changing table. I prepared the pen and administered the gel. Adam was home, thankfully, and he had hung up on his conference call and was standing by her side, talking to her. I left them to go find a cell phone to time how long the diastat took to work. We had instructions from neuro that if it lasted longer than 3 mins to call an ambulance. Thank God it was over almost before I could start the stop watch on the phone. We let her lay on her changing table. She was moaning and moving a lot more than she did the first time. Adam lifted her on the changing pad and carried her into our room. I sat with her on our bed while Adam made breakfast. I called Neuro and left a message with the nurse and then texted pt to cancel, called my mom and sister. All never leaving her side.

Jack was awesome. He told me he had tried to rub her back when he found her but it didn't help. He's such an awesome big brother and has wonderful instincts to come tell me when something is wrong. Now that we know Addie officially has a seizure disorder, I won't be putting Jack in the position of finding her in bed seizing again. So far, that is her pattern.

Addie slept for quite a while but was fighting the meds a lot sooner than she did in Orlando. From what I can tell, she had a lot shorter seizure and because she didn't have to have double doses of meds, it didn't seem to knock her for as big of a loop. She started trying to roll over to her belly a lot sooner, which made me smile. That's when I know she's sleeping more than knocked out.

We are trying our best to process this new development. I really thought her seizure in Disney was a vacation fluke. But it's happened again, at home, in our normal routine, not out in heat and humidity, and I've been making sure she's been getting plenty of sleep. The only thing I can find that connects the two events is the lack of drinking. We put Addie back on the bottle after her seizure in September. And she just weaned herself again last week. Right before her seizure. She just doesn't drink as much out of a sippy or out of a cup as she does from a bottle. I can't help but wonder if this is connected. So time (hopefully) will tell. I pray that she's goes even longer before the next one. We are taking precautions on our end to better hear her in the night and see her to check on her. We have filled more diastat pens to be ready. She has a follow up neuro appt in January to come up with a seizure plan.

She's back to her cute self and we thank God every day that she wakes up smiling. She has several new words - is probably up to 25 now. At her pedi visit yesterday she weighed 31 lbs and was 34 1/2 inches long. Crazy!!! Her head circ is up to 53 cm.

We've been busy with holidays and Christmas shopping! Life goes on. Hopefully my next update will be more fun filled!!