Thursday, July 30, 2009

The hills are alive with the sound of... acceptance!

Much to the chagrin of most of the men in my life, I have always loved The Sound of Music. Ever since I can remember, I've known every word to the songs, could quote random points in the movie, and can even say that its the only movie I own on VHS and DVD. So right now, I am reminded of one Music quote that seems relevant to our recent drama with day care:

"Reverend Mother always says when the Lord closes a door, somewhere he opens a window" (Maria to Captain Von Trapp - look it up!)

After our most recent reject from (what I thought was our last hope for getting Will into) a daycare, I sort of launched into Super Mom mode... there had to be a solution! Thanks, Aunt Heidi, for all your words of Hallmark wisdom, too... it helped!

I used my resources on Facebook to ask around about some of our NICU nurses, special educators, laid off friends, etc to see if they would be willing and able to care for Will for 6 months. I called special ed care centers that don't take children until they are 3 years old to see if they could break their policies for us. I even called and emailed all of the day care centers that had rejected us, to see if we could come up with a creative solution. No stone left unturned, no pride, no qualms.

The last center I contacted was the one that told me weeks ago that that they had 40 kids Will's age on the waiting list ahead of us. I went straight to the director. Left her a long drawn out, honest, raw (did I say long?) message chronicling where we'd been, what I had done, what we were looking for, and asking if we could come up with some creative solution.

I didn't know if I'd get a call back, I probably sounded a little desperate and scary in my message.

But she called me back that night. Baby crying in the background. Had I appealed to her mommy side? Anyway, she said she thought we might be able to come up with something, that she'd pull Will's file in the morning and call me back.

And she did. She said that she had to double check, but she thought they had one special needs slot open in the toddler classroom (which typically kids age-out of when they hit 2 and a half). Did I mind if we put Will in a classroom that was slightly below his age group? We do not mind. Will's never been in a day care center before, so this is going to be new and scary for him... in addition, his latest developmental test showed that he was between 9 months and 1 year in development. This could work out really well, I told her.

I told her all of Will's medical history, his various therapists and doctor appointments, all of his equipment, the g-tube... and she remained unfazed. And then she said it.

"We can help you."

I almost cried. The assistant director called me back later in the day to tell me that Will's name was on the list for the toddler classroom, and that I'd need to stop by to drop off a $75 registration deposit and pick up some paperwork. In my mind, I can't do that soon enough!! I am so nervous about it falling through like some of our other plans!!

So Will starts in his 5 star, inclusive day care (meaning it is typically developing kids and special needs kids together) on September 8. Oma leaves on September 10, so this is perfect!

Just unbelievable... I am kind of still in shock. This is a long time coming, and a more perfect solution than we could have hoped for!! I did want to specially thank LHH for being interested in being Will's care provider in the case that this didn't work out... we all really appreciate it!

Tuesday, July 28, 2009

Another round

They said no. They finally called back and said that they loved Will and wanted to help us, but that they couldn't meet his needs. So we have no options, no placement for Will for day care in September. I know that the life of a parent of a special needs child is difficult... but its still not easy to hear people reject you and your child. Repeatedly.

Thursday, July 23, 2009

La la la la, La la la la...

Elmo's on! Don't bother us, Mommy! Note the fixed gazes and open mouths. "Watch out for Mr. Noodle, he's shady." Sorry, just a little bit of Elmo's World humor. Or something. I hear that fuzzy red monster's giggle in my sleep.

Wednesday, July 22, 2009

The eyes have it

Today was Will's 6 month ophthalmology appointment. Lucky me, we were running a little late to the appointment (ME?!!) and they are doing a ton of construction on Erwin Road right in front of the Duke Eye Center. Argh. We got there, though, so that's a step in the right direction.

Of all the doctor appointments that we go to, the ophthalmology appointments seem to take the longest because you have to wait for the eyes to dilate in between exams. Will did pretty well though, he continues to show visual acuity improvements... and although his vision is not "normal," he continues to improve. Yay!

Will's cortical visual impairment is still considered to be "mild" and his near-sightedness has not gotten worse since the last time they dilated his eyes a year ago. I had thought we might come out of this appointment with glasses to correct for Will's near-sightedness, but I think this before every eye appointment and we always come home without them. They did note that Will has an astigmatism in both eyes... thanks Grandpa Harry! Just kidding.

Will does have intermittent eye misalignment. While he is looking at something with both of his eyes, sometimes his right eye wanders a little bit. The doctor told me today that because Will's eye moves all over the place, surgery isn't a good option for him. If his eye was permanently misaligned, they could do surgery to shorten the muscle that holds the eye in place to correct it. But because Will's moves, surgery would have no benefit. The fact of the matter is that Will has a muscle control disorder, and it takes muscle control to keep your eyes straight!!

So we left the appointment with a clean bill of eye health, no surgery date, and a follow up appointment in January 2010. I'll take it! Below is a picture of Will hanging out this morning, waiting for his eyes to dilate... so patient!

Tuesday, July 21, 2009

Home movies

Still no answer on day care for Will... and so we've been passing the time by shooting videos of the boys (amongst other things, like attempting another beach trip, which didn't happen as planned...). Here are a couple of fun videos. If you get the email update of this blog, its probably best to go to the actual web page to view the videos:

Here's a video of Will playing a game with Nate, putting plastic beads into a bucket. Will really enjoys this game, especially the sounds that it makes.

He also enjoys messing up the games, just to get a reaction. He clearly knows that he is letting go of the bead before it gets into the bucket, and just look at that reaction!!

Luke loves drinking out of big cups, not sippie cups. So here he is with a cup full of ice... he would crack up when the ice would hit him in the face. And kept going back for more!

Wednesday, July 15, 2009

The Waiting Game

And so we wait...

We still have no day care placement for Will in September. Nate and I took a tour last week of another day care center that specializes in inclusion of children with special needs with "normally" developing children. You may recall that we have been sent away from two centers, and the third told us that they don't have openings right now. We've only been able to find 4 centers within about 30 miles of our house that even say that they will take children with special needs... and even then, some times they say that Will's needs are just too special.

The tour last week went well. They told us they'd have an answer for us by (last) Friday. They took Will's development plan to review and to ensure that they could meet his needs. They wanted to talk with their nurse, the director, and a handful of other folks. But Friday came and went without a call.

I wasn't able to get in touch with anyone at the center until this morning. She told me that they are "50/50" on their decision to accept Will into their program. They'd "love to have him" but just aren't sure - in the current economy - if they can maintain their ratios while caring properly for Will with their current "recession-sized" staff. Ugh. She had a couple of other people to talk with, and again promised to call on (this coming) Friday.

I know that parenting is all about patience. But damn. I'm tired of waiting.

Wednesday, July 8, 2009

Miracle drug?

Before last Friday, we were really starting to doubt that the g-tube was the best thing for Will. It seemed like since his surgery on June 9, he was increasingly irritable, and was becoming less tolerant of his feeds. He would gag when he laid down, sat up, stood in the stander, while getting his teeth brushed, while getting his hair brushed, while getting fed, while getting burped... all the time. He would even gag if someone mentioned the word "gag." He was probably consuming less than he had prior to the surgery, and was not sleeping for more than 2 hours at a time. Everyone in the house was miserable. Poor Otis started sleeping in our closet to get away from the crying and vomit. Sometimes, I wished that I could join him!

So after exhausting all of our options with the surgical team (we didn't really want more surgery for Will), we turned to our trusty CP clinic doctor... perhaps a saint without wings, or at least at this point, a saving grace with lots of options and a prescription pad. I described what was happening with Will, and he immediately starting tossing out ideas for things we could try. He recommended stomach emptying studies (perhaps Will's stomach isn't ready for all of this extra food and is over full?), hypoallergenic formula (perhaps Will has slowly become intolerant of Pediasure?), and then he said perhaps the g-tube surgery actually caused stomach hypersensitivity (also known as gastric hyperesthesia).

Gastric hyperesthesia can cause both stomach contact and content sensitivity. It could cause the stomach to become less tolerant of food it had always had (Will had this). It could cause stomach pain which would keep someone from being happy and sleeping (Will had this). And it could cause the stomach to retch when the belly was barely touched (Will had this too).

Angel Doctor recommended that we try a drug called neurontin to counteract the stomach sensitivity. If you look up neurontin, you will see that it is primarily used as a drug to stop seizures. Will does not have seizures. It can also be used to treat adult's pain from shingles. Will doesn't have shingles either. If you look at one of the last things that neurontin is used to treat, you'll see the words "neuropathic pain." This is what Will's stomach sensitivity is caused by - pain caused by damage to the nervous system. It could be temporary, it could be longer... we just don't know.

In a funny sort of way, when you look at the side effects of neurontin, the two main ones that affect people are sleepiness and increased weight gain. Umm... hello? Miracle drug? I say that in jest of course, because there are other serious potential side effects such as tremors and decreased muscle tone, but Will's dosage is so small that we do not expect to see these.

Will has been on neurontin for almost a week. In that time, he has slept through the night every night. He is keeping every feed down and reached his calorie goal yesterday for the first time since his surgery. He is burping easily and often. He is happy. He is napping well. He has only gagged a handful of times, and has only spit up (not even vomitted) three times in a week. Most of these occurred right around the time his neurontin dose was wearing off. Prior to the neurontin, we were up to at least three full vomits per day.

Needless to say, this is the answer to a lot of prayers. All we wanted from this surgery was for Will to thrive. And we finally feel as though we've got the bag of tools we need to make that happen.

Things just can't stay quiet for too long around here though. Today, Luke and Oma took a tumble on the front walk way. Luke hit his head very hard on the concrete. Though there was no blood, we didn't take any chances and went to the UNC ER. They did a CT, which revealed a small bleed inside Luke's brain. They did a number of blood and neurologic tests over our 7 hours there, and determined that Luke's bleed was not getting any worse (his body was able to stop the bleeding) and he didn't have any neurologic deficits. We came home with strict instructions for things to watch for (typical head injury things like lethargy, vomiting, etc) and a very sore little boy. But he is in good spirits, hungry, showing off... back to being Luke.