Picture Dump

I owe this journal some time and some pictures, so here they are. I love having this to look back at and remember details I may have forgotten. I may not have as much time as I used to to go through and post pictures and tell stories, but I want to have these memories captured somewhere. I've taken thousands of pictures, so I picked out a few of my favorites and I'm going to post some updates on the kids after the pictures.

Me and Andrew, just because.

Andrew with his penguin artwork at his art show! in March. So proud of my little buddy.

I may be biased, but look how beautiful this child is.

 

Proof that my children can and do coexist.

 

 We had Christmas pictures done. Evie was loving it. Andrew not so much. 

 

Evie on her 5th birthday. She had a DC Superhero Girls party. She's developed an obsession with  Harley Quinn.

My BFF Nikki got married, so for the bachelorette, Nikki, Megan, Nikki's SIL Sherri, and I went to New Orleans. This is the uber ride into the city.

My favorite picture of us in the whole world:

We got stranded there an extra day and ended up at the aquarium.

 

Andrew's Easter egg hunt at school!

All dressed up for Church.

I had an egg dye helper this year! She cracked like 10 of them because "gentle" isn't really her forte.

 

She's obsessed with her daddy. She just wants to be with him 24 hours a day. Every time I pick her up it's "Mommy I want DADDY". Yes, I know. I love you too. It's so cute. 

The Nikki got married, and I got my hair and makeup done professionally! Here's me and Megan.

And me and Brian. The pictures of Nikki are all on snapchat, and it's a PITA to get them over here at work, but let me tell you... she looked GORGEOUS.

Andrew likes slides now. The little girl on the scooter almost ran directly into him. This is him looking at me like "Mom, wtf is that about"?

 

We taught Evie to play baseball, but she just wanted to hit things with the bat a la Harley Quinn. 

My old old old friend Greg tattooed me last week. He did an awesome job and I can't wait to go back to him.

This is the day after. It's a little scabby, but healing way better than I expected. It's Harley Quinn diamonds, like from her clown costume. I got it for Evie (and also me because I love HQ). Now she wants one, but she's got 13 years to go. If I have enough time before my transplant we might put a joker card behind it and a mallet or something 

 

 

 Last night I went into the kitchen and came back to find Evie dressed in her HQ costume, reading a DC Bombshells comic we bought on Saturday. She says the comic store is her favorite store now.

 

And now we're up to the present! Time for updates!

Andy: He gets the smallest update because he's boring. Still loving his new job and we are starting to get the house back under control!

Me: Still no kidney. Seems we're looking at October now, which I'm ok with. We both (my brother and I) need to build up some leave if we can, and it'll be better to be laid up when it's cold outside. I'm trying to lose 25lb by then. I'm down like 13, but I want to lose 25 more just to help with the healing process and such.

Evie: Is hilarious. She's so funny and sweet and smart. She has gotten much better at writing and her sight words are amazing. I can't believe she's going into Kindergarten. She's a handful, but she's just like any other kid with a penchant for DC comics lol.

Andrew: He's been in private speech since January and is doing really well. He has a few signs, and says a few words. He still just wants to cuddle all the time, and is so happy. Unless you tell him he can't flush the toilet, which is kind of his thing right now. He's smarter than me.. like.. the kid figures out things so quickly and is so perceptive, and I just can't with how bright the little guy is. He's doing letter puzzles on the ipad, he's a whiz with technology. I wish there was a consistent way to test what he knows, but since he doesn't really talk, it's just kind of wait and see.

That's all for now. Everyone is well (for the most part) and things are moving along. I 'll post again before 6 months is up!

Comings and Goings

As usual, when I wait forever to post updates, I have a lot going on, but I don't have a lot of time to post right now, so I'll be pretty direct.

Andrew: Andre was given a school diagnosis of Autism last month. He started at The Autism School a week later, and is doing well. He has adjusted extremely well. We're still working on concrete words, but we always think we hear him say things. One day it'll be consistent. He's finally off the bottle and on a sippy cup 100% of the time. And he's FINALLY expanding his food repertoire! Today he ate two peanut butter sandwich crackers. I know it sounds silly, but it's not a puree! He's as happy as can be, but he's starting to throw more tantrums, which is pretty on par for a kid about to turn 3, and he's getting frustrated because he can't talk to us. We're scheduling an evaluation with Kennedy Krieger to try to see what they think will help him the most. All in all though, he's doing well, and is as sweet and cuddly as ever. Unless he's outside and you bring him inside. By God, are you insane? DONT DO IT.

I don't have nearly enough pictures of Evie on my phone. She's also doing well in school. She's headed to a regular kindergarten, and her teacher keeps telling us much she's improved. She's sitting still and focusing better, and her fine motor skills are improving. She wrote her name, and below you can see a self portrait, which was one of my goals for the end of the school year, and it's only November. She is pretty moody as 4 year olds can be, and uses so much energy focusing at school that at home it's a task to.. keep her on task. But she's such a little love. Always giving us hugs and kisses and telling us she loves us.  She's letting me read whole stories to her now and actually listening. And she never, ever, EVER stop stalking lol. She''s hilarious.

In a few months, my kids will have a new biological sister, and we'll have a biological DAUGHTER out there in the world. I'm sooooooooo happy for her parents. They've picked out a beautiful name, and though I can't share pictures, I should get one and I'll let you know how much she looks like Evie! This little girl is such a blessing. I hope one day I get to meet her, but I'm certain her parents are going to be so wonderful to her, and I'm so glad we picked them. It's been an outright wonderful experience, even if at times I miss her and wish she could have been ours. God had a different plan, and it's a great one. 

Hey, Pictures Are Part of It

Today is an interesting day. Supposedly I'm done with my kidney crap and ready to schedule, but apparently they aren't 100% sure. They said my kidneys are "borderline" and they may want to wait. Uhm.. WTF? You said under 20 could be listed for transplant. I've been at 16. How is that not low enough? Hopefully that's a false alarm, but I'm getting blood work done today. I will cry giant tears if they say no transplant. My brother just finished his testing, too. Let's do this. On a more positive note, I got new hair, so here's my face!

For some weird reason, I don't have a ton of pictures of Andrew the last few weeks. He's been motoring around and mostly reading his books.. he's holding one in this picture. He's still the happiest little dude. Big changes coming, though! We had his yearly meeting with Birth through 5, and they are recommending him for the autism school. That's what it's called, but you don't have to have autism to go, and we still don't know what's up with Andrew. They will take Global Developmental Delay as well. He's been getting a lot of evaluations, and folks have been asking us a LOT of questions. He still has to see the school psychologist and behavioral therapist, but we have a meeting on the 29th to make some decisions. Assuming he's approved, he can start in October. I'm so excited for this prospect because he's done very well in daycare. He's made so many improvements, particularly socially with tolerating other kids (he still loves adults). But at this school it's a very low teacher/student ratio (sometimes as low as 1:1) and they are qualified to deal with his particular needs. Evie's school is great for her, but it's not enough for Andrew. She needs help learning to sit still,  where he needs help with feeding, speech, etc. They do all of that, and it's an all day program, which is nice.

I hope the structure helps him to thrive, and the constant attention helps him with eating and such. And, of course, his speech. Lately I've noticed him babbling when I pick him up and restrict him in some way (high chair, or when I have to pull mulch out of his mouth... yeah.. hopefully they fix that) and it seems like there's some intent behind it. He babbles "no no no no" and it seems intentional, but I can't be sure. Leave it to my kid to make "no no no" the thing he starts to say consistently haha. Other than that, he's doing great. Still my snuggle bug, still sleeping well. The only real complaint I have is that he is eating books and mulch. Or at least chewing them. I've never seen him swallow, but I still feel bad having to pry his jaws open to get mulch out. This is something he does at daycare, and I'm half tempted to tell them to keep him inside if they can't watch him, but at the same time, they have other kids, and most 2.5 year olds aren't still chewing on dirt. Still, yesterday I pulled 4 pieced of mulch out. Like.. pay attention to my child... don't let him eat mulch.

Anyway... otherwise, good stuff. He's just such a good kid and he loves to be held and rocked, and we slow dance a lot :). Cause he loves his momma so much!

Evie is FINALLY mostly potty trained. She poops exclusively on the potty. She has not perfected pee, but she goes to school in big girl underwear, and she's doing pretty well. she also loves school. They sent me the picture below because she was so proud of her work in  her workbook. She's making such great progress. She has trouble waking up in the mornings, though, because she doesn't want to go to sleep at night, so it's basically like having a mini teenager. Complete with tantrums. She has been so emotional the last few weeks. Like... so dramatic. If I won't go get her juice cup it's whining. Daddy is working... whining. She's 4... 4 year olds don't like "no"... so it's fine and age appropriate. I will just be very happy when we're past whining. Or at least do it less haha. She's also hilarious. I'm having trouble thinking of a specific example, but she has me in stitches all day long. The other night she did start testing out her pillows, telling me she needed to find one that was "refreshing". She finally settled on one, and still talks about how refreshing it is.

Oh, and look at her in the bottom picture. She's such a big kid. I mean literally she's taller than any other 4yo I know, but she looks like such a kid and not a baby! It's going by way too fast. Next year she starts kindergarten.

 

Andy and I are trying to work things out with our schedules and be best team we can right now. It's hard with me so sick all the time, but we're doing our best. He's been my rock through all these questionable things with my kidneys. He works late most nights though, so Evie really misses him. On Thursday nights and weekends they spend most of their time together because she sees me all the time. But it works out because then I get some rest. I'm ready for this transplant to be done and to hopefully feel better and be able to do more with the kids.

 

A Sort-Of Sibling For Evie and Andrew

I think I have another journal to write later, but right now I want to post about something I don't talk much about.


Andy and I had 3 embryos left over from our IVF cycles. After Evie, we didn't know what would happen with my kidneys, but we planned to have another baby if it was possible. When Andrew came along, we realized there just would not be any other way we could work out a third baby (or fourth or fifth given 3 embryos). My kidneys wouldn't have it. So we decided to give them up for adoption. It was tough because Evie was being looked at for potential sensory processing disorder at the time (which we no longer thing she has) so some places wouldn't take them. We finally found a place that would, and they immediately had a couple ready, who I'll refer to as "T&N". T&N knew everything about us and our kids, from my cholesterol issues to Andrew's delays (still undiagnosed). They still wanted them and were so happy to have them.


Well, N is pregnant! They transferred the two embryos from E's cycle that were frozen together. Only one took, but at least one did! She's now coming up on 14 weeks, and I'm so excited. It's still so weird for me to think that if the doctor had let us put in two like we asked, I could've been having the baby instead... though I'm glad that didn't happen because my body couldn't handle it. It's weird that their baby could've been E's twin. That it was conceived at the same time. That Evie and Andrew and T&N's baby are full biological siblings. I'm so, so glad it worked. I don't pretend to know the whole process but I know they had to spend a good deal of money on embryo storage, transfer, and legal fees, and the idea of them doing that and not having a baby was so upsetting! So I'm just relieved that it worked, and I hope everything is ok with the baby. Neither E nor A have high cholesterol, so hopefully their baby won't either. E has ADHD, but otherwise is fine. She's super smart and sweet and imaginative. I hope their baby is all of those things. Andrew has those delays we're still figuring out, but he's also so cuddly and precocious. I hope their baby is those things, too. I hope that their baby doesn't have delays, but at the same time, I know if it does, they're going to love it so much anyway. Everyone, even non-family, falls in love with Andrew right away. Kids and adults alike. Delays or not, he's so freaking special. Of course if we ever find out what caused his delays, we'll let them know. But there are so many wonderful things about both of my kids that I hope T&N get to experience with theirs. Evie is so social and loves to make friends with anyone and everyone.  Andrew is reserved, but if he likes you he LOVES you haha. They're just so special and I'm so happy for T&N.. that they get to experience carrying and having a child, but also, a child with the potential to be as amazing as E and A are!


And they still have one embryo left from our first failed cycle if they want to try for a sibling. But even if it doesn't work, they have this baby, and I could not be happier.


So just for my own edification, I'm going to break down our IVF stuff by the numbers.


Combined info from two cycles:


Total Antral Follicles: 39
Total Eggs Retrieved: 18
Total Mature Eggs: 14
Total Fertilized Eggs: 10
Total Embryos That Grew to Blast: 5
Total Embryos Transferred: 4 (one as a day 3 embryo)
Total Embryos Resulting in Pregnancy: 2 (Evie, and T&N's baby)
Remaining Frozen Embryos: 1




So... Two IVF cycles and 40 follicles... 2 babies and 1 still on ice. Those are really crappy odds!! Look how many follicles were empty or had immature eggs, or the eggs didn't fertilize. That's so insane! And then Andrew we had naturally. Truly a miracle.. both of my kids!!

Answers. Sort Of.

I don't really have much in the way of pictures for updates. I haven't been taking as many lately because the kids have just been running me ragged. We also lost our sweet Jess to cancer last week  and it's been a rough time for everyone.


This week feels new in a strange way. Andy and I fought a lot yesterday and somehow I feel like we got to a place of understanding about a lot of things. One thing we both discovered - or maybe I did... I think Andy knew this about himself - is that the disarray in our house is driving us both bonkers. We took some time together and brought Evie in to clean up the living room, and just that one small task has helped tremendously. Hopefully we can just go room to room and start getting things together. We need to sell our house eventually, but for now it would be nice to just be able to move around in it.


In other news, we finally got all of Andrew's metabolic and genetic tests back. Everything was normal, including fragile X and his cholesterol. This isn't an exhaustive list, but it's a start. Next up we have a kit to do cheek swabs so they can do a microarray test, which will tell us of any tiny chromosomal abnormalities. Most of those wouldn't be named syndromes, but they'd take down his symptoms and features and note his specific anomaly and check it against their database of other tiny anomalies. That may come back completely normal as well. The good thing is that without a metabolic or genetic syndrome of some sort, we have lots of hope. Not that we wouldn't have any, but there are general courses some of those things take, and with just a delay, it could turn around at any time.

The Mother of All Updates

Life is full of twists and turns and ups and downs. Honestly, that's not the reason I haven't been posting. I like to post from work and it's hard to get pictures. I wanted to put pictures in this post because it's so important to me to document how much the kids are changing. Evie looks like such a big girl. Andrew is such a little boy as opposed to a baby. I also warn that this post is going to be extremely long because SO MUCH has happened. I don't have pictures for everything because, again, it's so hard to get them here, but I still have a lot to talk about since my last post in March!

I'll start with Evie because her picture is at the top.

Can you believe this child? Look at her. Look how she's grown. Do you know she's wearing size 6 clothes? In girls'. No more toddlers, though I can get her in a 5T if I need to. She's something like 44 inches tall right now, too. I'm sure that, like me, she'll always be the tallest in her class. She is going into Pre-K next year, and they're working with her on her pencil grip. Her fine motor skills are still not great, but she's finally getting the pencil grip. She traces letters and numbers perfectly. Her teacher and I are certain she could just flat out write, but she doesn't have any confidence, so we're working on that. She's doing phonics... letter sounds and things. She knows all her letters and numbers, and is working on putting them together into words. She's also doing basic math. I've been told to stop worrying about teaching her academics because she picks them up through osmosis lol. I'm supposed to work with her on listening and understanding directions because her ADD is so bad things move out of her brain before she has a chance to comprehend. It's a work in progress, but she's only 4 and so, so smart. We'll get there.

Her imagination has turned into this bottomless pit of scenarios and people and characters. She's always someone. "I'm not Evie. I'm Officer Judy Hopps Bunny"! or Owlette or any number of people. She has whole conversations with the other characters, and if she doesn't have actual figures, she pretends her fingers are the characters.

She has always got me laughing about something. Everything that comes out of her mouth is hilarious, whether it's insisting that I say goodnight to her butt, or a story about school, or inviting herself to be the third wheel on a date with her 22 year old cousin.

My mom and I took her to her first movie this weekend to see Finding Dory. She was actually pretty good, and she loved the movie. She wants to go back every day. She's still super into swimming and playing outside, and wears me out like I can't imagine any other child on this earth could haha. She loves PJ Masks, Zootopia, The Lion Guard, and Bob the Builder. She's got a huge sweet tooth that we are having trouble overcoming without setting her off on a sweets-only adventure when she's old enough to decide for herself. She loves to eat ice cream and watch Bob with daddy, but we try to make sure that's only 2 nights a week. Sometimes we fail.

She's got an attitude. Partially because she's 4, and partially because she's mine haha. There's a lot of "You'll have to go to your room if you don't listen" going on in our household. But she's also so sweet and loves to cuddle and sit in our laps and she needs someone to lay with her at bed time, which can be annoying, but sometimes is just the sweetest thing. I love laying with my girl and playing  and talking about our day.

She is still not potty trained, and it's so embarrassing. She can go by herself, and poops on the potty, but she just does not want to pull herself away from what she's doing to go, so unless we offer some sort of reward she just doesn't care. It's frustrating but at least she knows what to do and does it sometimes. I mean.. that's something... I think.



 

Next up is Andrew.



Andrew was a huge surprise for us, as you all know. Looking back on my older Facebook posts around this time is funny to me because I was writing about how tired I was, or throwing up, etc. and I found out it was because I was pregnant. It never ceases to amaze me. Life with two children is definitely more difficult, but I don't think I ever could've felt complete without Andrew. He is such a special little boy.


We took him to a geneticist a few months back. We didn't learn anything, and are waiting on some test results. She said he has a couple of dysmorphic features which could indicate something genetic, but nothing really stood out to her, so we're just going to run the battery and see what happens. The test we really wanted isn't covered by insurance so we're going to see how we can get that one done and wait on the results from the others in the meantime. Unfortunately he's still not speaking, but we did decide to seek extra therapy, so he now sees a private speech therapist twice a week. We're working with him on signing, and just understanding that he needs to "ask" in some way before receiving something. He's starting to pick it up slowly. Sometimes I swear he's saying words. His state-provided therapist even said he said "go". Sometimes when I ask him questions I'm almost certain he says "yes" in response. I really don't know what's going to happen in the future, but we're trying. They also do feeding therapy and hopefully that will help because he still won't eat solids. Can. But won't.

On the up side, he's definitely learning. He helps me get him dressed and tries to hang up his coat when he comes in (though he's too short to reach). He's starting, albeit very slowly, to understand utensils. Andy has been working with him on that and I'm really proud of their progress. With learning also comes the terrible 2s. He's climbing over everything, getting into everything, and currently obsessed with closing doors. He's stealing toys from his sister and throwing little tantrums like any other 2 year old. It's kind of silly how happy those things make me, but he's expressing himself and interacting with her, and that's progress. I think at times he still sees her as an obstacle. He doesn't snuggle with her like he does with us, but I think that's because he sees her as "the one that takes my toys" or "the one that won't stop touching me" haha. She loves him so much and I hope he opens up to her soon.

He's doing so incredibly well in daycare. He doesn't cry or anything. He just goes in and starts playing. He's starting to interact with his teachers and school friends. Not a ton, but he is making eye contact, and he always wants his teachers to hold him (really, he wants any and everyone to hold him. He was in his new speech therapists' lap after 5 minutes). He comes over to the mat for story time and sits with his friends. It's just been a great experience for him and to see him interacting with other kids is really nice. He has interacted with Evie. He'll roll around on her and take her blankets and things. I just want them to be close. They're so close in age and she loves him so much. I think he's just not sure what to make of her. She can be overwhelming.

He's also very, very attached to me. It doesn't matter where he is or what he's doing or who he's with. If he sees me? He wants up. He runs to me and throws himself into my arms. He follows me around the house. He stands and watches TV between my knees, and climbs up into my lap and back down about a thousand times a day. He snuggles with me, and the last two nights, he's given me real kisses. Like... lean in, plant one right on me, unquestionable, undeniably... kisses. It can get tough because E needs me, too, but usually she's pretty good about understanding that he's a baby, and she's also not nearly as touchy as he is. She loves hugs and kisses, but just not constantly.

And for the most part, he's still just the sweetest thing. Sleeps like an angel, rarely gets upset (aside from the tantrums since he's 2!). He just adds something to our lives that was missing. It's impossible to be sad with him loving on me all the time!

I got pictures done for Andy for Father's Day, and this is the one I ended up framing. Andrew was MISERABLE the entire shoot, so we did the best we could.

So that's the kids, but what about Andy and I? Well, we'll talk about Andy first.

I don't know if I ever mentioned this, but he got a new job. He started working at Paypal at the end of March, and last week was his first week on the floor. He's trying to adjust to his new schedule. He works 4 ten hour days, 12-11 (including lunch) so he's home really late. He is off weekends though and that's been nice for us to be able to plan things to do together. It's a big change though working such long hours, so he and the kids have been missing each other. The good news for me is he's taking them to school in the morning so I can go straight to work. And the money helps. He makes way, way more than he did at Wawa, and gets overtime and holidays and vacation and such. It's just really nice to have a little security. He has benefits and a 401K and stuff, too. And I think he's happier. All he's wanted to do was just contribute more financially and he's doing that now and he feels good supporting his family. I'm just so glad this happened for him, and there's so much room for growth.

And me. Well, it turned out that my brother is a match for me for a transplant. He's on the second round of testing, and we're hoping for a Fall transplant. We were looking at September, but he's been out of town a lot so it may end up being October. The kids and I are going to have to stay  with my parents for a while because Andy's schedule is not conducive to my recovery. I'm thankful they have agreed to help me because he can't be off that long and I can't lift or drive or anything, and I can't tell a 2 year old not to roll around on mommy. I mean I can, but he doesn't get it. So they're going to help me wrangle the kids and get them to school and stuff. I just can't wait for all of this to be over! 

Andy and I are looking to buy a new house maybe next year, too, so I'm trying to cram in a bunch of house projects and he's being a pain about it, but we need more space, and he at least acknowledges that much. There's so much going on I feel like I never have time to sit down, but in all honesty things are pretty good. I just pray every day that God keeps giving us strength and helps us to make the right choices because sometimes I'm just not sure. What I do know is, as always, I'm blessed. 

Kidney News 2K16

When I started this blog in 2010, it was focused on having a baby. For the past six years I've written about the ups and downs of infertility and even a surprise pregnancy. But peppered within those family-centered writings have been notes of importance about my health. My children are the most important thing in the world to me. I adore them, and if I'd known it would happen in advance, I'd still have done it. But that does leave me having to face the fact that my kidneys went to hell in a hand basket. They would have anyway - it's the nature of the disease, and we tried everything we could to stop it. I've spent 6 years wondering "when". When would my kidney function drop so far I needed help? Would I have time to wait for a transplant or would I need dialysis? Finally, some of these questions have answers.


I've always said I just wanted to get my kidney transplant over with, and, while that remains true, there's a whole new set of circumstances to think about when it actually comes down to that time. And it finally has. My latest set of test results show my GFR at 17. Creatinine at 3.2. Which I thought would suck, but I was also ready to just move on. A few weeks ago my nephrologist started me on a medication for blood pressure that he said my make my creatinine jump a little. I was ok with that. Maybe I'd hit 20 GFR and get the ball rolling. But the results were much worse than I though, and, though he didn't say it, worse than my doctor expected. As it stands, I'm waiting for a re-test right now, that I'm pretty sure is to make sure I'm not in acute renal failure.


It's really stressful knowing basically nothing about what's going to happen, but at least I know I have an appointment on 4/11 to discuss it and get the ball rolling. My brother should be able to begin testing quickly. They are already verifying everything with my insurance for my part. I don't know how long it will take from start to finish, and until I get these test results, I don't know if I have a prayer of making it without dialysis.


I honestly don't know how we'll keep paying for things if I have to stop working for more than  8-10 weeks. And so many people on dialysis can't function well enough to work. That's why you get social security disability for ESRD. But that's not enough to pay our bills, and I certainly can't lighten the load by watching kids. I'll be physically unable. So I just pray I can keep working until transplant, take 10 weeks off, then work from home for a bit and then come back.


I'm looking at all the things I'll have to go through, hoping I'll pass the tests. And then the things they do during surgery. Ports in your neck, catheters in your pee hole, another huge, open surgery scar. I can't pick up my kids, and they can't lay on me for a few weeks. I'll have to be away from them for 7-10 days in the hospital. People bothering me all day and all night. I was supposed to stay with my parents for a bit when I came home because Andy will be working so much, and they could pick the kids up from school and make sure they don't jump on me, but I'd still get to be with them, but now their house won't be done. I hope they realize I will literally be of 0 help except to hand out cuddles for at least two weeks.


The good news is, if we get it done soon, it'll be over, and this whole mess will be in the past, at least for a while. Maybe by the next time I need a new kidney they'll be artificial. I'm hoping not to need as many hospital stays as my friend did after hers for various infections. I expect some hiccups, but I pray that for the most part it will be healthy momma and her babies doing all the things I 've been wanting to do. And Andy. Haha. All I can do for now is pray.