Tuesday, May 29, 2012

My Brave Man

No, not about a medical procedure or appointment or blood draw!
It's about the ladies!
Yesterday Garrett and I had most of the day alone together, and it was really dreamy! We went park hopping, grocery cart pushing and then ended the date at the local ice cream shop. I got rocky road on a sugar cone and my date got the usual, a vanilla milkshake. We walked outside to the patio of the ice cream shop where there is a colorful canopy and some chairs. Out under the canopy sat one of the pretty high school girls who works there some and knows Garrett. She sat in a chair, and on either side of her sat young high school dudes who were very obviously enjoying her company or were her close friends or brothers or something like that. Garrett walks over to the three of them and without any hesitation points to the young lady and says,"I want to sit by HER!" And just like that, the dude to the girl's left hops right up and tells Garrett to have his chair. SERIOUSLY??????
So eat your heart out high school heart throbs, college dudes and fighter pilots. My boy has his game on!!!!

Godspeed,
Clara-Leigh

P.S. MY PARENTS ARRIVE TOMORROW!!!! AND THEY SPEND THE NEXT FOUR MONTHS HERE IN THE BUNKHOUSE!!!!! CAN I TELL YOU HOW EXCITING THAT IS?!?!?!?!?!?

Saturday, May 26, 2012

Garrett Update and Mommy's Emotional Ramblings

Tonight I plan to blog two different topics. First will be the most important: How's my little buddy Garrett doing? Second, I need to share some things that have been weighing on me. I will warn that if you do not want to hear raw truth from the most sincere, somewhat troubled heart, don't read the second part!!!! I do not intend to drag anyone down, but there are some goings-on lately that I would like to address.

Okay, the really cool part, Garrett!
Our little guy has been doing some really super-cool things lately!! First, he graduated from Kindergarten last Tuesday! He will remain in the same special day class next year and can stay there through 5th grade, but Tuesday he got to go one stage with the elementary school's regular kindergarten classes, sing a musical with them, and get his diploma. He would NOT wear his graduation hat. Just wasn't going to happen, no matter what!!!!
Next, I have to gloat over how he is writing his name again!!! Over two years ago, he was writing his name, then the skill went out the window. Now it is back!!! He is also drawing faces on his magnadoodle board.
Just this past week he got a box of preschool-size Legos out of the toy closet and really latched onto the concept of looking at the instruction/example booklet and building things from seeing them on paper. I am THRILLED to see this type of skill from our little guy!
Oh, and can I tell you how EXCITED I am to report his latest potty skill??? Well, I can and I will, now!
He is wearing underwear almost every day, all day. But wen he has to have a bowel movement, he usually goes in his underwear....or worse. I will try to catch him trying not to poop, then put a diaper or pullup on him. And he gets aggravated in the biggest way. Lately, thanks largely to RaeAnn, his personal care person, has been staying after Garrett to drink his chocolate soy milk with the Miralax in it, and this is getting him more regulated. We increased the dose to 15-% regular adult dose, and it seems to keep him moving almost daily. We have switched out of diapers completely this past week, and Medicaid is covering his pullups....THANK YOU!!!!! He will use the pullups while asleep or when having to poop. Two days ago when we got the new pullups in, Garrett had been inside while I was out at the barn for a bit. When I came back to the house, Garrett said he had poop, and I could feel my heart sink thinking that he had messed in his shorts. But when I checked, he had a pullup on, and I had not put it on! He had felt the poop coming on, and he had gone and changed from pants and underwear into a pullup and shorts. I started calling most of the people I know to tell them about it. I was soooooo excited!! So today I was cooking  and Garrett slides over to me and says he is going to put on a pullup. No joke, he had the pullup on his precious, scrawny body in under a minute, but wait, that's not all! ABout 15 seconds after Garrett in his pullup walked back into the kitchen to show me how he had it on, he filled it up with poop!!!! THIS IS HUGE that he is feeling it happening and is willing to take charge!! I am so proud of him.
His vocabulary and conversation are booming!!! He is so chatty and will use words that surprise me.
He is getting more patient in a couple of areas and finally able to talk about patience a little. I can see the wheels turning!
His sleep study results should be back by June 13 for our follow-up appointment.
Oh, and Garrett got onto Addie's horse Big Red one day in front of me with no saddle and rode about 30 minutes. He usually shows no interest in animals, but he rode with me and we laughed, and is was one of my most fond memories to date!
He has started getting a plastic cup out of the kids' plate/cup/bowl drawer, filling it with water from the fridge  door, drinking it, and then pouring any extra in the sink and then rinsing out his cup and placing it back into the drawer. That's cool!
He has started doing better staying with me in public. It is still a challenge with every outing, but there is improvement.\\
AND HE IS STARTING TO READ!!! He can sound out some 3-letter words. HUGE!!!!

Now the things that are maybe going downhill:
He cannot for the life of him deal with BUGS.....sees one and is haunted for hours!! Shelby, his developmental therapist, is working on this, but it's sooooo aggravating! It's almost summer!!!!

We usually don't buy kids meals for fast food, but when we do, he cannot deal with the fact he got a toy with the meal but didn't ask for it. He wants me to "take it back and tell them I didn't order the toy!!!

He still has trouble about 30% of the time with yes and no answers. He switches back and forth. He also has trouble with making a decision and sticking with it. He is asked if he wants the cookie I have in my hand. He says no, but when I take a bite, he loses his mind.



Now onto my brain ramblings.
The other day I posted a photo of Garrett online, and a lady commented about how time flies and next thing I know he will be 40. It was so hard not to comment back that I will blink and he will probably be in Heaven about 20 years when he should be turning 40. It's haunting. And while I know this person did not intend to insult or upset me, it did strike a nerve. I let it go until I got a text from a close friend after she read it. She was fired up!!!

I have another friend who is such an angel. Her child is friends with one of my children. I love this friend and I appreciate her, but she has this complaining thing going on. I will be in poop to my elbows, trying to cool dinner, on the phone with Grouchy who lives in Louisiana planting beans for now, and I have to hear about this lady's "exhaustion, tiredness, and worry." It's all relative, I know, but seriously....raising one child, working, hhhmmm. I know it is relative, I know, I know. But I am knocked to the floor when I see her complain, which leads me to the next topic.

Whining moms. Don't get me wrong. I was more of a complainer until the health issues of Garrett's surfaced. Boy has God whipped me into shape. When I was at kindergarten graduation last week, I kept seeing moms grumping at their kid for walking too slow, fact, fussing over little girl's hair. And the kids were so darn cute!!! And then there was Garrett in his nice outfit on stage moving in weird ways to the musical music and not singing a single note, although he knew all the music. He turns his head to the side and bobs it strangely and even flaps his hands. He looked so obviously "special." And I stood there filming the event while my heart was being ripped to shreds. Don't beat your kids, yell at them, abuse them, get all freaked out about a misplaced hair bow. I guess I know I would trade sooooo much to have Garret to be average or normal. SO if you have a normal kiddo, love him or her, and never, ever, ever take a day for granted. It's so painful to walk this path with this sweet little boy and know his life won't be long and that he cannot understand or deal with this world very easily as most do, and to see so many people taking their healthy kiddos and their simple lives for granted. Don't get me wrong, I would never wish bad on anyone, but I do wish that some of these parents could walk in my shoes for one day and then change their perspective. Yes, I took my kiddos for granted before now!!!

I have more to say, but my eyes are crossing and I have a bug day tomorrow and it is Grouchy's birthday but he isn't home that day. Serious bummer!!

Godspeed!
CL

Thursday, May 24, 2012

Sleep Study #2....It Worked!!!

Garrett's new pulm. doctor in Boise thought a sleep study would be a good idea now since Garrett hasn't had one in years, probably had the first one around two years old, maybe younger. I asked if we could have an overnight EEG done at the same time so we could see what might be misfiring at night. On and off Garrett has many wakings at night and will be up roaming, turning on lights, toys, the fireplace...YIKES!!! Then for months he will sleep all night. We were lucky enough that the hospital agreed to do the EEG and sleep study together!!! COOL!
We arrived at the hospital around 7 in the evening last Wednesday. It took two ladies and about 40-something leads glued to his noggin and sides and legs. Garrett was so not liking all of that, but he held out pretty well......until they brought in the canula for him to wear under his nose to measure the carbon dioxide he blows off as he sleeps. The kicker is that now the canula for the sleep study also has a rubber piece that extends below the nose from the plastic tubing and curves under the top lip and into the month to monitor mouth breathing. Seriously, my sensory kid has survived all the glu and tape and now a nose and mouth deal. GGGRRR. Garrett cried lots and begged lots and lots but finally had on all the gear and fell asleep on his bed. Once he was zonked pretty well, I joined the sleep study tech in her office to watch Garrett's vitals and video. Around 1 am, he woke and pulled the canula out of position, so the tech and I went in to help. Garrett was then awake and angry as a hornet!!! About 40 minutes after that, he went to sleep again. Whew! I slept from about 3 to 6 in a room nearby. When the nurse woke me in the morning, Garrett was happy watching television while she removed the wires and all. 
Garrett and I then went on a Krispy Kreme donut break and it was back to work, or school, for him. 
We should be getting EEG and sleep info back in mid June. 
The photos below are from the morning when the leads were being removed. Garrett was really a pretty good trooper!!
Godspeed,
CL