Me and the kids spent the weekend in Paris at the end of September so we could be at Nolan's Birthday party.
We drove straight to Clay and Mo's house and had some good cousin time with their gals.
Jaylie and Ellie were covered in sand so they got to take a bath.
Nothin' beats a ride on the lawn mower with Paw Paw
This is the only picture I have of the party. I was taking pictures for Rachel with her camera the whole time. Rachel's mom always does puppet shows at her kids' parties and this Mario puppet show was a HIT with klp. He was dying laughing.....like not breathing, no sounds, dying laughing.
Mallory and Q are still big buddies.
Kanyon had a couple of Doctor's appointments in Dallas on Monday, so we had to divide and conquer. I was still nursing Jaylie but went ahead and left her for the night with my brave mom and dad. She did fine for the short time I was gone. She and Quinn spent the day in Paris and had a blast. Kanyon and I got to spend the night with Alison and klp was in HEAVEN! He loved being at her house and watching cartoons on her TV.
We had to be at the hospital at 6:30 so we were up and out early, but klp was happy to watch the news in the waiting room.
We had our MRI, then had a few hours to kill before we had to go see the Dr. Luckily we could go back to Ali's apartment and chill on the couch for a while. My sweet boy was holding my feet :)
Meanwhile I get pictures like this from my mom assuring me that everyone there is fine!
klp got the hiccups in the waiting room and was dying laughing.
After the hiccups, he went right back to reading his Texas Monthly magazine.
We got home late that afternoon. First stop: Mule ride. What a good big brother, protecting Jaylie from the sun!
Ever since vacation, Nolan and klp have been partners. They are so sweet together and love playing, drawing, or whatever they can do right beside each other.....or better yet..in the same chair!
We went to visit Paw Paw and Uncle Clint at their office. klp saw Paw Paw in his mask and was pretty sure he needed one too.
All the while, Q and Mallory were raiding the treasure box that is supposed to be for all the good little patients.
A couple of weeks later we had a day full of appointments with another set of Doctors. This time Kanyon and I left late one night, spent the night with Alison again and left Kory with j and Q for the night and he took them to Mindi the next morning.
I keep forgetting to take pictures with Alison, but its a huge understatement to say Kanyon and I both LOVE staying with her. All day that day at the hospital he kept telling people he had a sleepover at Ali's house.....haha....then he had to have his blood drawn and after that he was telling everyone he saw that he got a shot with BLOOD. Ha!
Scottish Rite has nice big rooms with toys and plenty of room to walk around and play. Sure makes waiting a lot more fun!
I enjoy my time with just Kanyon, but I wish it didn't always revolve around Doctors, therapy, and other medical necessary evils. But I'll take my 1 on 1 with him any way I can get it! :)
Why is it always so cute when kids are getting checked by the Dr.?????? I take a picture every time.
We had a good visit (despite a yucky ouchy screamy blood draw) at Scottish Rite with our neurologist. We just can't seem to find a medicine that stops klp's seizures. We are in the process of getting off one and getting on a new one so we are praying this helps.
After that appointment we hopped in the car and drove over to Children's hospital for 3 more appointments. He's enjoying his Scottish Rite popcorn watching TV in the waiting room at Children's.
One of his appointments was for a kidney/bladder ultrasound. Just some follow up checks after his bout with HUS in August 2011. Thankfully, he checked out good and Dr. says no need to come back for 2 more years! yay!
After a LOOOOOONG day in and out of hospitals, Drs, labs, elevators, parking lots, and waiting rooms, he had quite the collection of "treasures" to show for his day of being a DELIGHTFUL patient.
I had to make a quick stop in a store and klp saw this hat and HAD to have it. I happened to LOVE it on him and thought the boy deserved a treat after working so hard all day.
All during the day I'm getting great updates from my DEAR friend Mindi who had Quinn and Jaylie all day.
Quinn was in heaven spending the day with Trent, his BFF.
These pictures are cute and all, but this is a tough reality for families like us. (I always feel the need to make sure everyone knows that I KNOW it could be so much worse and more involved than it is for us. It only takes one minute in a children's hospital to be made aware of how much harder other people have it. So, while I am fully aware and humbled by the GOOD we do have, I also feel the need to tell the other side too). Its a constant juggle to fit in all of these appointments around our regular schedule of therapy, school, and day-to-day life. Then I have to either drag my other kids and my mom or Kory 2 1/2 hours (and often overnight) to Dallas and spend the day waiting and waiting and waiting for all of the visits, or I have to find help for my other kids and leave them. I don't like being away from my kids and I get tired of asking for help. BUT it is yet another reminder of how incredible the people around us are. My mom is a HUGE help at times like this, but we also have to use friends too. Our friends have families of their own to take care of and they don't bat an eye when we ask for help for an afternoon, an hour, or a WHOLE DAY. Mindi and lots of our other friends are so helpful as I try to work my way through this complicated "dance" of taking care of klp. This last trip to Dallas was supposed to be a day trip, but the day before klp had 2 more seizures and when I talked to the Dr. that afternoon, they wanted to see him ASAP. Thankfully they could fit us in first thing the next morning when we were already planning on being in Dallas later that day, but that meant at 4:30pm I had to scramble to get me and klp packed, call Alison and ask her if we could stay with her (she's a gracious last minute host), get everyone fed, stuff prepared for the next day, coordinate pick up and drop off with Mindi, and leave 2 kids crying in the driveway as I threw Kanyon in the car and left at 8:00 at night. Not to mention the husband that comes home from work to a thrown together supper, a frazzled list of instructions and things to remember and then left with 2 kids to deal with on his own. Not cool. I am not saying all of this for any reason other than to just say that this little life of ours can get complicated and we are so thankful for so many friends and family that step up and fill in no matter what. This is the part of caring for special needs kids that most people don't see or know about.....unless you are our relative or friend and you get the phone calls from us asking for your help! Ha! At the end of days like that I go to bed feeling tired, but SO SO SO humbled and thankful for good reports, good Doctors, good friends, and a good travel buddy!
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