Saturday, June 13, 2015

Landry's last day as a threenager

Here it is, a little after 11:00, and he is still sleeping. I'm letting him, he's had a rough week. His first prize from the Poke-R Club was put in the mail Thursday, so that will stretch out the birthday festivities, and Grandpa Ron's gift may or may not arrive today. Mimi's gift will be up here early this week, so we'll find a way to get to Arlington to pick it up from Great Aunt Janey. GrandmaMom and Grandpa Alan's girt is still perched atop the washer/dryer, with the kids none the wiser.

Nicole gleefully volunteered to make his cupcakes at her place, which should guarantee that they actually make it to his birthday present and accounted for. Ryli may or may not go to "help". Nicole went to Build-A-Bear to get Landry's present, and I know for a fact that he will go insane. I look forward to that particular gift, because I would much rather he climb into my bed in the wee hours of morning with it than with the gifts he got from me and already claimed. 

Tomorrow will most likely be spent at the pool as much as possible. At some point, we will have Landry's birthday dinner. He requested McDonald's, so McDonald's it will be, but we will have watermelon as well. Then, the cupcakes and some ice cream, and more playing at the pool. 

The final birthday present will come on Thursday or Friday. Mr. Obsessed with Dinosaurs will get to see the movie that he's been obsessing over since he saw the preview for it during the Super Bowl. We're going to go see Jurassic World, more than likely with his friend Jayden, who also has a birthday next week. 

Originally, I was going to get him a scooter and the accessories to go with it, but the diagnosis of ITP would have made that a cruel choice. He may have just had IVIg, but there is no way of telling if it will work any better than the steroids, so why risk a a gift that he may not always be able to use at will? To avoid the fights and the sad little boy, I got him a clutch of new dinosaurs, and a trip to the movies. Win-win in my humble opinion.

And now, he's awake and celebrating being the little brother. Yes, he is torturing Ryli already. Time to put on my referee's stripes and pick things up a bit. Tomorrow is party day!

Thursday, June 11, 2015

Landry's 1st IVIg

For starters, I was a bit nervous about the whole prospect of Landry potentially hooked up to an IV for any length of time, especially with wrangling Ryli as well. Fortunately, Nicole doesn't start her summer job until next week, so she and Ryli had a sleep-over Tuesday night That proved very fortunate, as our ride showed up fifteen minutes early, and Landry did not want to wake up.

So, we loaded up the car seat and the bags. I erred on the side of caution and packed his dinosaurs and some things to keep me occupied, as well as snacks and drinks. Landry was nervous, and held my hand until he fell asleep en route.



We got signed in and headed to intake. Height and weight and blood pressure were a breeze, as always; he likes those. Buzzy made the actual blood drive a bit better, and then it was off to a room to wait for the doctor. That meant seeing one of his favorite nurses, Ashley, who he gushed all his knowledge of dinosaurs to. 

Results came back at 27. Between what I had been noticing in the past few days and his history of nosediving numbers, in conjunction with me not having a car and his upcoming birthday this weekend, they decided that the best course was to go ahead and proceed with the IVIg. So, off we went with Nurse Ashley to meet Nurse Coco and Nurse Shelly.

First things first a we got into our room... the dreaded IV. This prospect of another needle was made infinitely better by the promise that once it was placed, Landry got to go pick out a prize from the prize closet. He almost got it on the first go, but it ended up being a bad placement. So, with the news that another stick would mean a second prize, Landry sat perfectly still, and it was placed in no time.

While we waited for the bag of immunoglobulin to arrive, we were shown to the prize closet. Landry found his toy snake in no time flat, then spent the next five minutes scouring the closets for something, ANYTHING dinosaur. Finally, on the bottom shelf, slid way into a corner, he found his holy grail. A 2" by 3" Melissa & Doug dinosaur puzzle. 





We put the puzzle on the table as Landry climbed back into his treatment chair to get his Benadryl and Tylenol to stave off the potential side effects. Nurse Shelly wielded them, so of course Landry took them like a little champ. Then, the bag of immunoglobulin arrived and the drip was started. It wasn't long before the Benadryl carried Landry off to dreamland, and I sat and played with my phone and texted back and forth with Ryli and Nicole. 



Landry also got a steroid shot into his IV. When he woke up, the pig out began. Chicken strips, french fries and macaroni and cheese with a chocolate milk chaser. Before too long, he was hungry again and ate a cup of chocolate ice cream, a pizza, and 75% of a bag of popcorn. All of that between one and four. He also made his first foray with his IV stand to the activity area, where he played with cars and watched part of Toy Story 3.



At around three, Nurse Shelly came in to see if we wanted to go back to the activity area, as some of the other kids undergoing various treatments and their siblings were there doing crafts, playing, and watching movies. Landry couldn't get back down there fast enough and nearly forgot he was attached to an IV stand. He played along side his fellow patients and their siblings, and painted a set of pencil bags, one for him and one for Ryli.

By 4:30, the IVIg was done and the lines were flushed, and we posted up at the entrance for our return trip home. He is still extremely active but much happier now that his treatment is working its way through his body. If there is a next time, Ryli will go. There is plenty for the two of them to do.

All in all, I'd say it was a success. I made a mountain out of a molehill in my mind.So, next time, if it's needed, I'll be ready. Landry already wants to go back to see the nurses.

Wednesday, June 10, 2015

Life With/Life Without: Friends

The title of this one alone makes it sound like a bit of a social pariah. For the longest time, however, I was more or less kept from having any friends. X just made it nearly impossible to have any. The one I did have, he eventually sabotaged by getting into it with her man. After that, I never really tried to have any.

I started making friends again when the kids and I were in the shelter. It was nice. To have someone to talk to in the flesh, and not just through Facebook and the like. When we got the house, however, I once again retreated. The units around ours were mostly empty, and the ones that were occupied seemed to be single people, without kids. I had one friend in the complex, an old veteran named Andy, and he has been my walking buddy for treks up to Aldi and the occasional stroll down to QuikTrip.

My Facebook friend Ashley drove up from De Soto with her son when I had a class to take, and no sitter to watch the kids. I fed the mob pizza and paid her with A World of Ice and Fire. After class, we had a beer and mugged for some selfies, as the boys played with their Toothless figures. That was a blast.

I made it through the winter, and still more or less kept to myself and the kids, save our treks to Aldi with Andy, and my Facebook buddy Cynthia (and sometimes her little girl) that would drive down to help me with errands. We also went down to San Antonio with Ashley and her son to meet up with some other friends from a Facebook group to surprise a fellow mama who was going through a really dark time. We dropped Ryli off in Georgetown, however, as Dacey took the whole weekend off so she could spend time with her little sister. Cynthia got a job (yeah) so once again, it was just me and the kiddos, with an occasional stroll to the store with Andy.

Then spring came, and as the kids started to go outside more and more, I got to know some of the parents and grandparents of the kids friends. I started getting to know Nicole, one of my neighbors from the next building, who just finished up her first year teaching. And then, there's Jayden's G-Ma. 

Of the bunch, Nicole and I are definitely the closest. When the weather was awful, we agreed that since she was in an upstairs unit, she would hole up over here if the weather got too bad. She runs us to the store, and while school was still in session, she'd pick us up sometimes from Children's so we wouldn't have to take DART home. We have mastered the art of getting paid once a month, alternating who buys when we grub out on yum that we didn't cook. I found an ad on Craigslist for free kittens, and she took one to keep her Rosie company, while the kids each claimed one a piece.

I like having friends. It's nice to have someone that isn't related who "has your back" when you need a little help. I like the possibility of going to the Nacogdoches Film Festival next February with Ashley and Elizabeth. I have a blast on my little "cleaning parties" with Nicole ( we have both decided cleaning another person's house is a lot better than cleaning our own). It's just nice to have real, local friends, and those few that you get to see from time to time.

Tuesday, June 9, 2015

Call me Nervous Nellie

Landry has labs in the morning. We haven't been to Children's since the day he took his last round of steroids. He was at 217K for platelets back then. That is not the case tonight. I'm going to guess that they are, at best, in the 30K range. Last time I made a statement like that, they were at a 4K. He's been moodier than normal, and acting wilder than normal, plus sleeping and itching more than normal... acting the same way as the last time the numbers plummeted. And the petechiae, or as Landry calls them, "my ITPs".

His fourth birthday is Sunday. At one time, I was hoping that I would be buying him a scooter, pads, and helmet. Now, it's Jurassic World toys and the movie for him. It would be torture for him to get him a scooter now. I'd have to lock it up if his numbers were too low, and he is on a veritable roller coaster as far as his numbers go. So, dinosaurs and a movie it is, and the hope that I can get him a bike or scooter for Christmas. 

So, tomorrow morning, I will pack us up for our ride to Children's. Lots of snacks and things to make the time go faster if the numbers are low, because if they are, he will get his first round of IVIg. We also have his dear Buzzy to go along for this trip. Hopefully, that makes any pokes go by a little easier. 

Time to go and try to ease my mind enough to get some sleep.

A day out and about...

Well, court was reset again, but not before GrandmaMom had started her trek to DFW from Austin. She's already put in for the day off, so she just kept on driving. She got here at around 10:30, and we headed out. We went to Home Goods to help her find a sheet set to coordinate with her new bedding, and then next door to Sprouts where she picked up a pack of crumpets and I got a few staples for my pantry. 

From there, we headed to Souper Salad, Landry's non-McDonalds choice for his birthday lunch. We all chowed down on our salads, and various breads and pizza..Ryli's choice for dessert was a sundae with strawberry, pineapple and caramel. GrandmaMom and I were skeptical that she'd eat it, but she devoured it. 

From there, we went to the Target closest to my house, as Landry had gotten a toy at Home Goods, but Ryli hadn't been able to find something pretty enough. Ryli found a Littlest Pet Shop playset, and Landry made off with a Jurassic World spinosaurus. We meandered from toys to housewares, where we helped GrandmaMom pick out an area rug and coordinating pillows, and even found a smaller rug for the front door to match the area rug. 

Then, it was time to say so long. GrandmaMom dropped us off with our purchases. She had to hurry home to let a vacationing Dacey's pup out, or face the consequences. We also started planning our next Amtrak mini-vacation.

All in all, it was a good day. Landry's birthday present from GrandmaMom is sitting on top of the washer/dryer. We ate dinner and got to bed early.  

Sunday, June 7, 2015

Getting back into the swing of things...

Day two of normal visitation is well underway. The kids missed seeing everyone, and I'd be a liar if I said I didn't enjoy having a bit of time all alone. I started a few projects before I knew that Pepaw was hospitalized that just could not be completed with them underfoot. Yes, I am purging the broken and mangled toys that they can't bear to live without if they happen to see them. 

I ordered some things from Amazon that have already proved useful beyond words. An over the door shoe rack for all the cleaning supplies and things that I need to keep them out of. That is already a stunning success to the point where I'm thinking I need another for the pantry, and another for the bathroom to free up space on the vanity. I also grabbed two tension rods for the closet under the stairs to aid in my constant battle with the laundry monster. Someday, maybe I'll tame it. Most likely when the kids can do their own, but oh well.

I was going to have to go to the final hearing regarding the kids tomorrow, but now that is up in the air. X is saying that he wants a continuance because of Pepaw's death (his step-dad). Supposedly, the judge will grant it. I think it's almost comical. Here he is complaining about how all of this is so unfair to him, and that he doesn't see the kids more and all this "Poor me" garbage, yet he is the one asking to push it back yet again? Makes absolutely no sense to me, but I will just go with the flow. 

It is nearing the appointed time to get busy and finish all my projects before the kids come home. Five hours should be more than enough. I will get back on track here starting tomorrow. 






Wednesday, June 3, 2015

Life With/ Life Without: Platelet Disorder Support Association

"Ignorance is bliss". How many times in my nearly forty years have I heard that phrase? And, in the case of PDSA, that definitely holds true. No one I knew in all that time had a platelet disorder, so naturally, I had no need to see if such a thing existed.

After that first blood draw ordered by the pediatrician, once we had gotten back home and my mother the nurse told me what the ITP was in the diagnosis code, I hit google, and I hit it hard. The next morning, when I got the results and was asked if I need a referral to a hematologist, I thanked my tired self for leaving all the pages I had found, and vowed to return to them once I'd made the trek to Children's. 

When we got back home, after all was said and done, the diagnosis confirmed and the kids worn out and put to bed, I sat back in this very chair and started pouring over the still pulled pages. I joined a Facebook ITP support group, which is run by PDSA. I read a lot that night, and sent for some free materials to be sent to give me all the information I could get my mitts on. I even ordered a storybook to explain it to the kids.

When I got all that I had requested from them just a few days later, I skimmed through a lot, and was generally in awe of what I'd been sent. I'm now chomping at the bit for my check to hit next week so I can get a membership and start Landry in the Poke-R Club (more on that later). There is a discussion group with an entire section for the parents of children with ITP. Between the discussion group and the Facebook page, and the hospital, I feel like I always have somewhere to go with questions and vents; problems and triumphs.

I read up on steroids to treat ITP. Before the next appointment, I'll go over the literature about IVIg, which is the treatment we will try next if his numbers plummet again. It's where I got the wild hair to change the background of the blog purple.

They have an annual conference that I would love to go to, but alas, my funds are limited at present, and honestly, I'm hoping Landry's clear of ITP by the 2016 conference. Only time will tell with that, though. They have run/walks across the country, both actual and virtual. They have a store as well as a treasure trove of information that you can order. 

I want to support them, because PDSA has made all of this a little easier to take. So, the first thing that I intend on doing when I get paid is get a membership, and then officially get Landry into the Poke-R Club. It's a kit that includes chips for pokes (blood draws and IVs), as well as a Buzzy Mini Pain Relief System and distraction cards, along with some other stuff. For every ten pokes and the chips collected, he'll get a prize. 

PDSA and their ITP support page on Facebook have helped me out so much. Landry looks at the trips back and forth to Children's as fun and games because he has fun getting there and back. He's not quite four, what's not to like about train rides? He knows that something isn't quite right, but as I said earlier, ignorance is bliss, so I do the worrying for two. With PDSA, I know what I need to know to help him through all of this mess, and hopefully to the other side.

Yes, I preferred life without PDSA in it, who in my shoes wouldn't? But ITP is in our life for the time being, and since it is, I am eternally grateful that it is here.

Tuesday, June 2, 2015

RIP Pepaw

The kids' Pepaw started the weekend off still in the hospital. Visitation Saturday with X was short, which I completely understand from Memaw's point of view. We were set to do the whole six hour stint on Sunday, just slid up a couple of hours, but sadly, Pepaw passed in the night. Ryli and Landry already miss him.