Remember me??

So, in the grand scheme of things, this blog isn't that old, but I have been nothing short of craptastic in my consistency.  I just derailed around Landry's birthday, and things got a bit more chaotic before they started to get better.

Honestly, June and July were nuts. Trips to the pool, hanging out with the neighbors,  the final court date regarding custody and all of that, summer day camps, Ms. Cole taking each of the two little ones to Six Flags on a day of the week at the other was at day camp. Ryli was the little psycho on her trip to Six Flags. Totally well behaved, but she rode on Dive Bomber Alley. Look it up on Google. What sane 5 year old wold do that once, and then proclaim that she'd do it again? Ryli and Ms. Cole also told the same story... Ms. Cole screamed her lungs out; Ryli did not. I may have an adrenaline junkie on my hands.

ITP is still lurking about, regrettably. Landry still gets occasional outbreaks of petechiae, but fortunately has kept his numbers up high enough that we don't go back (knock on wood) until late October. He may actually get his regularly scheduled 4 year shots... Imagine that.

Towards the end of July, I started seeing someone. The first weekend in August brought my three big ones down. Dacey and her boyfriend Jesse cooked for us before they left, leaving behind Connor and Tucker for the weekend. Ryli and Landry had visitation with their dad that weekend, so it was nice to have some time with just the bigs and then with everybody. Connor, Tucker, Ms. Cole and I went to North Park to shop, fix an iPad, eat and see Inside Out Sunday was more shopping at Fire Wheel (Connor bought A Song of Ice and Fire boxed set... YEAH) and we just roamed the place.

Connor and Tucker took Amtrak to my mom's on Monday. A few short weeks after that, my aunt and I had a couple talks, and Connor flew down here to live with us on August 22nd. School was supposed to start on the 24th for everyone, but due to Connor's old school operating on a trimester schedule and everything around operating on semesters, transferring became a big, fat hassle. He lost a LOT of credits in the transfer, making him a junior yet again if he went to a traditional school. So, Connor is in a charter. If he works hard enough, he will still be class of 2016.

Connor and I have done a ton of work around the house while Ryli and Landry have been with their dad. Landry has also made Connor into his own jungle gym. For a 17 year old, he handles it pretty well. We are still grappling with getting the morning routine down, but it is getting better.

Ryli is in Girl Scouts. Between that and all the various appointments and whatnot, we are BUSY! Landry has speech therapy, there's the stuff for everyone's mental health, physical health, the things that keep me sane, school, scouts, and the fundraisers have started. To put the icing on the cake, my knee isn't getting better with the weight I've lost. I went to the emergency room at Presbyterian  Tuesday night because I couldn't bear weight and was diagnosed with effusion and referred to an orthopedic doctor. Good news, it isn't arthritis. Bad news, it's probably something strained, sprained, torn, or blown, and I may end up having surgery. Woohoo to that noise.

Oh, and last week, I left the thirty-something crowd and turned 40. I have not quite wrapped my mind around that one. Fortunately, I have had no issue remembering my age on paperwork. Since Connor has arrived, there has been an over abundance of paperwork in my life. It's all worth it to have him here.

I am once again going to attempt to resurrect this blog of mine and post to it regularly. I am feeling much more capable of it now that the meds are back and I've got the house almost completely under control (thanks to Connor and the obscene amount of printables that I am now using on a regular basis). Admittedly, it may be spotty up until the first, but then I will be back daily, or at least damn close!

Changes everywhere...

Since the last time I posted, Landry turned four. Ryli and Landry both went to summer camp. They also were taken to Six Flags by Ms. Cole on the other one's camp weeks. There have been well child check ups, ear infections, and the occasional platelet check. Connor and Tucker came down and spent a few days with us before going to my mom's. Ryli got signed up for Girl Scouts. Landry started speech therapy. Connor moved down two days before school started. Ryli started school. After many issues and much angst, Connor FINALLY started school a week and a half late. Landry started homeschooling. Ryli went to her first Girl Scout meeting. We have been crazy busy. There was more, but I won't bother you with that now.

We are getting used to the current state.It has been interesting, to put it ever so mildly. I have become fueled by caffeine. Lots and lots of it. Coffee or Diet Mountain Dew (or its equally delish Kroger equivalent). Up around 5:45-6:00 on most weekdays, in bed by 11:00. Last weekend, while the younger two were off visiting with Daddy and Memaw, Connor and I shampooed carpets and sorted clothes. The carpet looks better, and Connor has more money in the bank, so all in all, not too shabby.

The garbage has been taken out often, and Landry must tote something out along side Connor. I suddenly have three assistants for loading and unloading the dishwasher. Clean up is becoming easier, except in the case of last night's first Girl Scout meeting, following a day full of speech therapy and resident meetings. 

It's nearing that time of day when I must get Landry ready to trek to get Ryli from school. I think we might go get a treat after for fun. Then we'll meet up with Connor and plot this weekend's adventures.

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!

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.

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.

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!

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.

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.