June's Mama's Mission of the Month

Another month, another set of goals. I'm sort of taking it easy this month, as in I didn't always put three tasks per subject. I'm doing it to allow for things like unplanned blood draws or knocks to the head for Landry, and pool time and fun time for everybody. This is, after all, Ryli's last summer not bookended by school. Wish me luck! 

PERSONAL

• Read at least four books
• Finish setting up my "office"

RELATIONSHIPS

• Try and do at least one thing with a friend without the kids
• Talk to each one of The Bigs

PARENTING

• Chore Charts
• Rewards for chore charts
• Get them into a routine

HOMESCHOOLING

• Start Moving Beyond the Page 4-5
• Seriously curb the screen time

HOMEMAKING

• Follow budget
• Try at least 6 new recipes
• Figure out ways to make things run smoother

MEDICAL

• Keep everyone's appointments
• Watch for platelet drops

BLOG/ONLINE

• Blog regularly
• Tweet about blog posts
• Get FB page up and going

MISCELLANEOUS

• Hide Tooth Fairy money
• Landry's birthday!!!
• Reboot FlyLady AGAIN

So, here's the deal...

I have been nothing short of a piss-poor blogger. Quite frankly, it's been a crazy month and a half, between getting appointments finally rescheduled and all the trips to Children's for lab work. There has also been dealing with the side-effects of Prednisone in a three year old when Texas refuses to dry out. He's also been eating like a proverbial horse Good times, I tell you, so long as mommy has plenty of caffeine, Add to all that the week or so that the drain for my kitchen had an intermittent clog for about a week, DART train line closures and re-routes, and it was more fun than anyone should be allowed for any one single mom.

So, in the final two days of May, here I am, once again doing a reboot of sorts. Not just with the blog, either. Basically, with EVERYTHING. I'll cover the blog first, because that's what this is, after all. 

I'm making one change to how I do Mama's Mission of the Month for starters. On the last day of every month, I'll post the following month's goals. Tomorrow, June's goals will be revealed. Starting in June, on the last day of the month, I'll do the recap and reveal for July. That will be the way I'll do it, just so it doesn't eat up two days worth of posts.

"Life With/Life Without" will be getting a reboot. I'm basically starting over. I'm not going to just pull a copy and paste job on what's already been written, because, quite frankly, I'm unhappy with the previously posted product. I drafted them on the computer for the sake of time, and I'm an old fashioned girl that way. All my posts are going to be drafted with pen and paper and then typed out. The way I used to do school assignments. It is my groove, and I want it back, damn it. 

I will post updates on Landry's journey with ITP. Just to bring you all up to speed, the second time we went to Children's and he had a level of 28, they scheduled a follow-up in June. By early the next week, I was calling to ask for a draw. Mommy's instinct was spot on, as his count was at 7. I was given a ton of instructions and a prescription for Prednisone in the event that certain criteria were meet. We ended up in the ER for a few hours that night, as Ryli was running one way, Landry the other, and it resulted in a head on collision. The lower the count, the greater likelihood of a brain bleed, and it's far better to be safe than sorry. By Friday, I spotted purpura (a rash of purple spots on the skin caused by internal bleeding from small blood vessels.) in his mouth and called it in. Steroids started that day. With a dose left, his labs showed his levels were 118. We scheduled an appointment for the following week. Ten days removed from that beautiful, triple digit count, he was at 4. One more round of steroids while they finished up getting insurance authorization for IVIg. Two days after coming off Prednisone, his count was a whopping 217. Next appointment is nearly two weeks out, and its the original follow up appointment. They have slid it up to 9:30 in the event IVIg is necessary, to remove the need for two trips. I'm nervous. He's clueless.

The whole ITP thing has been a bit of a trip. I already know what to look for, and so far, since the diagnosis, my "Mommy Sense" goes berserk around 30. Ryli has been great. Landry is pretty good, other than the lab draws. At this point, I'm not sure if he totally hates them, or if he's putting on a bit of a show. He wears his band for as long as he can, which is cute. Right now, for a brief little bit, he can almost be normal. Still need to watch his head, though, because the drop from 217 to the range in which I can tell his numbers are dropping is huge, and right now, he's not all that far into the "normal" range of platelet level.

This summer, Ryli and Landry each get to go to a day camp. I could have put them both into the same camp, but I thought that it'd be a treat if I sent them separately. That way, they get two week's worth  little breaks from each other, and in turn get some one on one time with me. 

The homeschool curriculum that I bought over a year ago is no longer collecting dust. Copies have been made, and we will be starting Monday. It should be fun. I've already discussed not sending Landry to daycare of any kind in the fall until his ITP clears, so we will continue through after Ryli starts kindergarten in the fall. I'll post little schoolhouse recaps on Fridays.

I've decided to ride it out a bit longer here. Moving would be a logistical nightmare, and right now, where we are may not be the best neighborhood, but it is very convenient to pretty much everything. Ryli's future school is just across the street. There are several major bus lines that go down our street, and they both have stops that cover three of the four train lines. There's an after school enrichment program that Ryli has been dying to start. It's close to every store I really need, and I've also made friends with the kids' friends' parents, plus there's Nicole, our resident teacher.

Expect to see more food on here as well. I have been a tad berserk in finding recipes, and June will be a month of trying a lot of new things. I am hoping that they will all be successful, but odds are there will probably be a minimum of one epic fail. 

To sum all of this up, I am back, and I don't intend to fall off like I did before. You have been warned!

Introducing Rex and Arya

Ever since we temporarily housed little lost Tag back around Easter, Ryli and Landry have been relentless on the fact that they wanted a pet. They have also been pulling at the old heartstrings, reminiscing about Percy, Zeke, and Katy. Then came Landry's diagnosis of ITP.

Thursday, I was looking at craigslist, and I really don't recall why. I came across an ad for free kittens. I thought that it just might make it easier to keep Landry inside when the neighbor kids are doing things he can't at this time do, if he had someone to stay inside for. I contacted the lady, and sent a message to Nicole to see if maybe she'd give us a ride to pick one. 

In the ensuing simultaneous conversations, Nicole said she'd take one, and the kitten lady said that she had three of the five advertised left. At that point, I decided that we'd take two. So, when Nicole got off work on Friday, we trekked off to Plano.

Originally, I was supposed to take the boy and one of the girls. Unfortunately, when we returned home, there was a mix up, and we got two girls, it would appear. Since they're going to be "fixed" in July, it doesn't really matter that one of them is named Rex, right?

Arya is by far the feistier of the two, just like her Game of Thrones namesake. Rex is a laid back cuddle monster who likes to climb up on my shoulder from time to time, and perch as if she were a parrot. Rex is also crazy about Landry. And, just in case you were wondering, Rex is short for T-Rex. Landry is still obsessed with dinosaurs.

Ryli and Landry are both doing wonderfully on keeping them fed and watered. Landry has sort of surprised me by voluntarily taking up Poop Patrol. I say sort of simply from the standpoint that he is all about toilet humor, so he thinks that scooping poo is fun. I will gladly supervise and enjoy him willingly taking Poop Patrol while it lasts!

So, our family of three is now a family of five, and so far, so good. When I manage to sneak a picture of the kids with the kittens, I'll put one up. I will say, however, having them around has definitely been helpful in contenting Landry to stay inside as opposed to trying to go out and jump on a scooter. 

My apologies for the derailment...

I was doing pretty damn well with blogging fairly regularly. I was almost proud of myself. I planned on taking a few days off when we went down to Georgetown, and that was all. What I didn't plan on was the entrance of ITP into our lives. That has been the bane of my existence as of late, although thankfully, Landry seems to remain blissfully unaware, except for those pesky blood draws.

He held at 28,000 platelets for over a week. The petechia started to disappear.Then came the morning that they started to come back, followed by the day that they were worse, and there were two or three in his mouth. I called his hematologist, and they scheduled us for a lab the following day, followed by an appointment.

The doctor came in when the results were back. Seven thousand. That was it. We were almost sent straight home with a prescription for prednisone, and instructions on when to use it. Strict orders that ANY bump to the head was an instant call to hematology and a trip to the ER. We didn't make it past check-out before we had to go back to the room, as Landry went and headbutted a waiting room chair. They iced his noggin and watched him awhile, then sent us on our way. 

We ended up in the ER that night, while our neighbor Nicole watched Ryli. After four hours of observation, they let us go home. Ryli and Landry had slammed into each other running opposite directions through a doorway, and they were on the floor crying for a few minutes after. As they gave us the discharge information, they said that it was far better to err on the side of caution with his platelets as low as they are.

Thursday was uneventful. Petechia, purpura, and bruises have become old hat. Friday, however, was different. On my check of his mouth when he woke up, Landry had no petechia inside his mouth, but two of their larger cousins, purpura. That was one of the reasons we were sent home with that "just in case" prescription of prednisone... so I called the hematologist for the official go ahead to start them. Just before noon, Landry started his five day course.

Day four of Landry on steroids was lab work. The trip there and back was nothing short of hell on earth, between the thunderstorm induced closing of all the downtown DART train stations and the subsequent shuttles and  waits, and the various, ridiculous meltdowns over the pettiest of petty reasons. The sole bright point of that whole adventure was the knowledge that the steroids are working. His count was up to 118,000. 

We are a few hours of the last dose, and then, its labs again on Wednesday. Hopefully, they stay up. Hopefully, if they do drop, they drop slow. There really is no way of telling. Once again, we wait. That's all we seem to be doing with this whole ITP thing.

My apologies...

With all the doctors' appointments, the trip to see GrandmaMom, and everything else, my showing here has been pathetic. I'll get back on track before the weekend is out. Also, the page is now purple with Landry's diagnosis. It will stay purple so long as he has ITP.

Our Mini-Vacation

Last Thursday, after loading the booster seat and all the needed things for a few days, we left for the bus stop. We transferred at the station to a DART train to Union Station, and from there, we got on the Texas Eagle to Temple, where GrandmaMom would be picking us up. 

The bus ride was a cinch, as we ride them quite frequently. The DART train was exciting. It was our second ride; it was also the first time that my ticket was checked. The officer then playfully rounded on the kids and asked where their tickets were. When they both told them they didn't have any, he laughed and said that deputies didn't need them. He took out a bundle of sticker badges which they gleefully affixed to their shirts.

The train ride soon reached downtown Dallas, where the kids were mesmerized by the fact that the taller buildings disappeared into the clouds. Ryli posed for a picture with her badge quite gleefully, while Landry decided to gnaw on Zebra D. Giraffe's head instead.

We made it to Union Station, and after a quick potty break and getting some snacks out of the vending machine, I went to get us checked in. That's where I found out that the train was 30 minutes ahead of schedule; only five minutes away. When the train was announced, Landry went crazy. We went out to the boarding area, and watched it roll in.

Landry and Ryli both lost it when the train arrived and they heard one of the conductors holler "All aboard!"

We got our seats, and made sure they were as close as possible to the stairs leading to the bathrooms. Over the next couple of hours, everyone in our party had their patience tried between the train running thirty minutes ahead of schedule and the fact that I didn't check the itinerary, so the hour plus layover in Fort Worth surprised us. Thankfully, they were persuaded to take a nap. All in all, they had a blast, I think.

My mom was waiting when we pulled into Temple. A quick run to Target, and we were off to the hotel. Dacey stayed with us, and we went out to eat and went swimming. Ryli and Landry both defected to their big sister's bed, so I actually slept alone! 

Friday was a trip to the outlet mall in Round Rock, after we partook in some Round Rock Donuts with Dacey and GrandmaMom. Landry insisted on some McDonald's for lunch. We went to HEB and got some grub for the grill and headed to GrandmaMom's.

After grilling up some brats and hot dogs, we headed down to the Wahlburg Beer-garden. When Ryli and Landry didn't have at least one of the adults hauled off to the arcade, they danced and played in front of the stage while the band played. My mind was on vacation, and I forgot my phone, or else I'd have pictures.

Saturday, we had a good breakfast and "helped" GrandmaMom and Grandpa Alan do some yard work. The kids even helped a bit stomping down the new sod. After all that fun, we headed to el Monumento, where Dacey ate dinner with us between her two shifts. 

After that, it was back to Dallas. By Sunday evening, I was very grateful that my mom had brought us home the night before. Had we left 24 hours later, we would have run into the thunderstorms that spawned tornadoes.

Life With/Life Without: Idiopathic Thrombocytopenic Purpura (ITP)

Now that is a mouthful. Suffice it to say that from here on, I will take the easy route and just call it ITP. Before this past Tuesday, I'd never even heard of it. Here it is Thursday, and I've already heard far too much of it. I would like to be greedy with it, and keep it all for myself, but unfortunately, the diagnosis is not my own, but Landry's. 

I really think this started last week, or maybe even the week before. He's by far the fairer of he and Ryli, and with the weather getting progressively nicer, the kids were outside playing after the older neighborhood kids got home from school til they went in at night. Riding bikes, trikes, and scooters, roughhousing, playing on the playground; I chalked all the bruises up to him being a nearly four year old daredevil. His shenanigans also produced a few split lips and a toe that he seemed to be trying to stub to a bloody pulp. Accidents happen, right?

Then, Monday night rolled around. The kids played so hard outside chasing bubbles from Ms. Nicole's bubble machine that they curled up watching "Inspector Gadget" on Netflix before an episode had finished. I took advantage and decided to take a nice, leisurely, hot bath, all by myself. That proved short lived, as Landry was soon standing in the doorway stripping down. Honestly, I think that boy could hear a running bath from a mile away. 

As he took off his shirt, I first laid eyes on the spread of petechiae across his chest, just under his ribcage. I got out and dressed, and he jumped in without a care in the world. I asked him if something had happened, and he didn't really seemed concerned. I got him out of the tub and snapped a few pictures, which I sent to GrandmaMom, asking for her opinion. I was at that time feeling pretty lucky to have a nurse for a mom. 

She texted back that I needed to get it checked out. We went to bed, and I called the kids' pediatrician first thing Tuesday morning. We got a 2:00 appointment, and by 11:00, we were off on a series of buses. 

The regular pediatrician was out on vacation, but the fill in was nice. She gave Landry a thorough check and said that we'd need to go have labs drawn. She brought us the paperwork, and we set off on the walk to Lab Corp. As we walked, I read the work order for the labs, pausing to text my mom "What is ITP? The pedi wrote it in the diagnosis code?".She answered back the long form of the name, mentioned something about a virus and complete recovery, and from that point, I was thinking that it wasn't that big of a deal.

Two vials of blood and an angry four year old later, resigned to the fact that there would be no answer to "What is going on?" until Wednesday morning, we started the long trek home. My mom had mentioned something about a virus, so I decided to be smart and not go to parenting class so as not to spread it.

Being curious, I referred to Dr. Google. That was a mistake and a blessing, I suppose. I learned that it is rather rare in children, as in only 4-8 cases per 100,000 in the U.S., and it was usual acute, lasting anywhere from 6-12 months typically, with anything stretching beyond that point being labeled as chronic. They don't know for certain what brings it about, but the body's immune system starts wiping out the platelets. Platelets help form clots, so without enough platelets comes bruises, petechiae, and purpura (loosely translated, you look like you've taken a beating). Problems getting injuries to stop bleeding becomes an issue. Normal platelet range is 150,000 to 450,000. The only thing that was most definitely worse in what I read that has a similar set of symptoms is leukemia. So, I went to bed Tuesday night hoping that if it was either, it was ITP.

I called the pediatrician's office first thing Wednesday morning. It was ITP; his platelet count was 18,000. She said she would refer him to a hematologist that could get us in right away. I told her that he had already been to one at Children's between finding out I had passed on my Factor V Leiden to Ryli and Landry and their ENT procedures. 

I called Children's, and at first I was told that the next available appointment was in mid-June. That's when I told the scheduler what his diagnosis was and what his platelet levels were. She put me on hold, then after a few minutes asked if I could be there by 2:00. I said no problem and got us all ready for another trip, this time by taxi.

Another vial of blood, and ITP was confirmed. On the bright side, his count had gone up to 25,000. Since there had been nothing aside from the bruises and their cousins, and he was on a bit of an upswing, it was decided that instead of treating, we would take it slow and see what happens. I have a letter for if he gets worse while we are out of town, and another for if he starts school or daycare while he's still dealing with this. It's still scary as hell, but life just is sometimes.

All goes well, and we go back to Children's on Monday for another CBC (complete blood count). Hopefully, he just gets better and doesn't need any steroids or IV treatments. It's just a lousy waiting game, with me wishing that it was me that had this to contend with and not one of my children. 

Before this week, I had never heard of ITP. Now, I get to try and explain to a not quite four year old that he can't do some things because I don't want him to get hurt. A stubborn three year old does not see reason very well at all. I've truthfully had more success explaining to Ryli why I need her to not do things that her brother shouldn't do. Maybe some "monkey see, monkey do" will pay off?

I'm fairly confident that this will not be the last that I write about ITP.