Time Passes By

Well, I guess it's been a while since I wrote here. Honestly the lack of gmail at work is a pain in the ass because I can't send pictures to this computer any other way. This post will be picture-free for now, but full of updates. Me first, because why not?




My health suuuucks. My hematocrit and hemoglobin and red blood cell count are lower. My creatinine is back up to 2.74, and I'm so tired I cannot handle it. I have been late to work a lot  and going to sleep early. I saw my nephrologist on Monday. Andy was telling him how hard it is on me to be in this constant holding pattern of "when are my kidneys going to fail" and he said pretty much... yep, it sucks, and I can't help you. We're trying a new medication that might.. help.. sort of? Except it might make my creatinine go up? Who knows. Seriously. I don't. He did say if we wanted to speed it up we could have another baby, but he wasn't serious. He just meant that short of doing something really damaging, there's nothing we can do but wait. Awesome.



Littlest is still the sweetest. He keeps getting fevers and he's super skinny. He's still not talking, but he is improving in every other way. Climbing on everything, babbling like crazy... going through books and not eating them. He's figured out that he's supposed to use the railing to come down the stairs, but he can't reach it yet so he just stands there and tries. My sweetie boy. He's still having trouble with table food, but we keep trying, and he finally today took a sippy cup. The kind that looks like a bottle but.. it's a sippy, dammit. One of his therapists suggested private speech therapy, but I found out our insurance won't cover a delay, only something directly tied to a disorder. But the neurologist was very clear that he didn't think Andrew fit the criteria for Autism. Though he did think we should talk with the autism clinic to be sure. I think what I want to do is see the geneticist and get some tests done, and if they don't show anything, follow up with the Autism clinic. He needs therapy, but I don't want to put a label on him that he doesn't have? If he does, then it's whatever because he's the same kid I love to bits no matter what label he has. I just want to do whatever is right FOR HIM. His body type is a little concerning to me as far as genetic things as well. He is gaining weight and growing, but he's incredibly skinny for his height. People have commented on it, and I mean I can see every vertebrae in his spine, every rib. I can see all the muscles in his legs. He eats and drinks a lot. So I just want to rule all of that out before we go in the direction of something that can vary by opinion. With genetic issues, he either has it or he doesn't. With Autism it's kind of subjective. When it gets closer to Thanksgiving he'll be starting a prep program like Evie, though, and I think that will be good for him. He's still my snuggle bunny. He just wants me to hold him all the time and tickle him and kiss him. He HATES baths. He likes water, like in pools? HATES baths. I am starting to wonder if it's the loud sound of the faucet, but I will have to do some tests to see. He loves loves loves being outside. He just wants to run and climb and feel the wind in his hair. He seriously makes the CUTEST faces when he's outside. He likes going to the store with me or Andy.. just any sort of time out of the house. Still loves Chuggington, still sleeps like an angel at night. His naps are getting kind of crappy, but he likes being in his crib either way. He's so smart and loves to figure out how things work. Which is cool except when you combine it with his love for the outdoors, you have him figuring out how to open doors to the outside. No good, friends. He's home with his daddy a lot these days. Sometimes my parents watch him, and I'm home Thursday-Sunday. I'm working Thurs and Fri but that doesn't mean I can't cuddle the crap out of him. It's nice that he gets a lot of time with each of us. We all just love him so much!


Evie is... Evie. And that's not a bad thing. She's just such an individual! She cracks me up all the time. She has me in tears regularly. She's still not potty trained because she's just so dang stubborn. It's frustrating, but we'll get there. She's so incredibly smart. She knows her letters and letter sounds, and she's built those foundations for reading and I can't wait to do that with her. Her vocabulary is incredible. She randomly uses words like "Catastrophe" and "stunning" properly in a sentence. I cannot wrap my brain around how smart she is. And stubborn. Did I mention stubborn? She wants to do things the way she wants to do them and when she wants to do them, and she's very dramatic about things like having to pick up her crayons, or not being allowed to eat a 4th slice of cheese. She loves Paw Patrol and The Lion Guard right now, and she's always pretending to be someone. Or she'll address me by a pup's name or call me Kion. She's hilarious and I LOVE her imagination. For posterity, I have to notate a few of the ridiculous things she's said this week.


*Puts a booger on her upper lip* "Look at my beautiful mustache"!
*Popi asks her if she's pooping "I'll never tell you".


Where does she come up with this?


I swear, I say this all the time, but I'm blessed with the most amazing kids. We'll get to the root of what's up with Andrew, but he'll get there. He's so smart and we just need to get those words out.

Thought Jumbles and Babies

I think this is going to be an odd post, but I have some feelings I think I need to work through and I have decided to do it here, where I keep real records of things I can look back on and show my babies one day. And that's where the problem lies. Oh, babies. They're so sweet and tiny and they smell so good  and wear the cutest little clothes. Newborn poops don't even smell. They're like dolls only perfect and 1000 times better. By the time Evie was Andrew's age (he'll be 2 NEXT WEEK) she already had a little brother. Of course I'm going to spend ample time discussing the amazing little angel that is my Andrew come next week, but today my thoughts are on my other babies.


Other babies, you say? Yeah, it doesn't work for everyone, but for me, the 3 embryos we have in storage are my babies. We've picked out another couple to adopt them, and I'm happy with that choice. We haven't actually signed the papers because they have to be notarized and it's almost actually impossible to get to the notary together with my husband. That's happening tomorrow. And that's it. Once those papers are in the mail, those babies belong to someone else. I'm happy that we chose a semi-open adoption. That I can have pictures and things of them, and send letters. But it's still so hard. What if they look just like my kids? What will I tell my kids? What will Troy and Nicole tell theirs? The thing is, I don't want them to think they were unwanted, because they weren't. They were oh so wanted, and Andy and I promised ourselves we'd give every single one of them a chance. I was stoked to have 3 because I thought the chances would be that 1 wouldn't work, and I was ok with 2 or 3 kids. Then Andrew happened by extraordinarily happy surprise, and it turned out that my body couldn't do it. Let me say now that I wouldn't change anything. None of it. My children are perfect. At least to me. But I still need to give those other 3 a chance, and I know T & N are going to be amazing parents. I just don't want those kids to think we gave them up because we wanted to. And honestly, it eats at me sometimes. In a different way, certainly, than people who give up newborns. But they're still a part of us. They're still going to look like us and have full-fledged siblings they don't know. I'd love for them to meet, but I don't know how T & N will feel. I just hope they pass on our love. And the fact that none of this was by choice.


The truth is, I'm not sure I'm ready to be done having kids. When we went to Philly to see my new niece, it sort of had the opposite effect that I wanted. I figured I'd go to sleep and every time I got up to pee, I'd hear a screaming baby. But Alicia and TJ were really on top of it, and there was only 1 time she cried and cried, and you know what I was thinking? I miss that. Am I crazy? Probably. It's almost like I forget my own kids being that size. I know they were. They were actually both a pound or more smaller than Hope, and she's a little nugget! I remember holding Andrew in my hands and being shocked out how tiny his little head was. I remember a newborn Evie sleeping on my chest. But it's all so far away it feels like a dream. Could my Evie really have been THAT small? It seems impossible, though I know it wasn't. And I touched Hope's hair and it felt like velvet and her cheeks were so soft. And part of me wants that again. I set this arbitrary "35" cut-off for having kids, and I just turned 35. There's still time. And you know what the most ridiculous part is? I miss the feeling of wondering if this could be the month. Even though it never was while we were trying. But the month with Andrew... when I started to notice little things. The anticipation in the minute before the line appeared on that test. The complete whirlwind of trying to figure out how to be a functional person with horrible morning sickness and just the knowledge of a new little person! Would it be a boy or a girl? Was it OK in there? What did it look like? When was my due date?


I know, deep down, on the surface, and I feel in my bones that I can't have another baby. My body couldn't take it. Stupid things like "Well after you get your transplant..." pop into my head and I squash them. Andy has NO interest in another baby. In all honesty, kids are hard, and we're finally starting to get some sort of structure back into our lives. Evie and Andrew sleep. Andrew sleeps like an angel, tbh, and I know if we had another kid it just wouldn't happen. Evie is such a delight. She's so funny and sweet. I love it when she does things like walk out the door saying "Bye Marshall! Bye Chase (Paw Patrol)! Love you!" And then takes my hand with a "Come on, mommy". Andrew is the sweetest boy on earth. He's so happy and he loves loves loves to cuddle. Our third kid would probably hate me lol. I couldn't handle it.  I know those are dumb excuses. But, we DO need to find time to spend helping Andrew and we barely have that, and I can't do anything else to infringe upon that. He needs us to help and support him.


Oh yeah, and I'd die. That's probably an important factor. I'd die and leave both my children motherless, my husband a single dad of two kids... yeah. No. I don't want that.


I think for the next couple years, until I'm at an age where it would be socially super weird to have kids, it'll always be in the back of my mind. But at least for now I have my sweet niece to cuddle, and pretty soon my friend's baby. Heck maybe my brother will have one one day. And I can continue to sleep at night, and think about the amazing adventures I can take my kids on now that they're walking and doing cool stuff. I have to put my trust in people I don't know to take care of my embryos, but I'm doing it. I trust them. I have so many feels for these people and what they're doing. I just want to hug them and tell them they mean the world to me. Even if I don't get to raise these kids, I know they're somewhere they'll be happy with parents who will rejoice over them. It's the right thing to do all around. But I still miss snuggling my own sleepy newborns.

Christmas Part 2

The kids were finally healthy for Christmas, meaning we got to do all of the things we like with my family. We didn't get up to PA because we're going this weekend to meet the new baby (more on that later). Before we went to do the family stuff, though, we had to get a hair cut. It was semi-traumatic for me because... well.. look at him!!

He turned into a handsome little man in 20 minutes. He was an adorable baby! Look at this. And he knows it. He's so smug.



And this was a little before that, but I got him eating some table food. It's not any sort of huge revelation, but... a cracker is adult foo, and he ate it, and that was pretty cool. I really want to transition him to more table foods, so at least it was a start.



I just threw this picture of Evie in here because she's so beautiful.



I tried to get pictures of the kids in their Christmas outfits, but... yeah no. Evie was jumping around like crazy. .She was so good but so excited. I got her a basic knit dress, but it had a super frilly bottom that was so cute. I tried to add a picture of Andrew in his outfit but the firewall at work said no, so I'm going to put one in of him later. He had a bowtie!



Christmas Eve we got home really late after dinner at my brother's house, but Andy had to do our traditions with Evie. Andrew was way too tired. Here they are writing a letter to santa and setting up cookies. And maybe eating some. They also put out "reindeer food". Santa couldn't eat all the cookies because Evie tried to give him too many.



Santa brought lots of toys for the kids, and the sweetest little blanket for Andrew. It's a hand-made Chuggington blanket with his name embroidered. I'm not sure who likes it more - him or me. They got this Paw Patrol ball pit and Evie is so in love with it. She also got a Rapunzel tower that came with a little people Flynn Rider. Yay!



 

But Christmas is wasn't over then. On Christmas day we went to my aunt's house. The kids were super good and I got to eat! And my parents brought Evie another present, so she was happy. And Saturday we're going up to see Andy's family, and they're getting more presents. They're spoiled and it's ridiculous, but I'm glad they're happy. But the other cool thing is that Andy's sister had her baby, Hope, yesterday. So we get to see her on Saturday! I can't wait! She's so little and my kids have a cousin which was something I wasn't sure would ever happen. I'm so excited to hold her and love on her and for the kids to meet her.

Post-Christmas Update Part 1

Happy Holidays and I guess Happy New Year everyone! We all know I won't post again before then so I might as well say it now.

I wish I could say it has been quiet, but boy would that be a lie. The truth is, things have been nuts since vacation. Between the four of us we've had 2 cases of bronchitis, one broken arm, 2 pink eyes, 3 infected ears, 4 stomach viruses, and one virus that I'm positive came straight from hell. But, by some miracle, it was all cleared up for Christmas. And it hasn't been all bad. I guess I'll go kid by kid, and we'll start with Evie, because the thing you're probably wondering about the most is the broken arm, and that belongs to her.

Other things belonging to Evie include 1 of the infected ears, 1 case of bronchitis, and 1 stomach virus. Since this all occurred over the course of about 5 weeks, we really didn't sleep... like.. at all... for a while. The night before Thanksgiving I got a phone call on my way home from work. "Hi, it's [Evie's daycare]. We just wanted to let you know that she fell on the playground. She's OK! But she's babying her arm a little". I'm already on my way, so there isn't much I can do. But I did have 40 more minutes of drive to be upset about it. When I got there, she was laying down on a table looking a serious mess. As soon as she saw me she said "Mommy I hurt my arm. I need a doctor". And of course I could tell by looking at her that she did need a doctor! So I scooped her up and we went straight to the hospital. She wasn't crying, but she was clearly in pain. I couldn't tell where it hurt, so I just held her. The hospital was full... like.. patients on gurneys in the hallways full. The waiting room was full as well, and nurses were coming around to take vitals. Evie had fallen asleep in my arms, but she kept moaning and groaning, so one of the nurses asked me what was wrong. I told them, and they told me to hold on a minute. I did, and while I was waiting, people around me were saying things like "Oh that poor baby" because she's 3 and clearly hurt. So the nurse comes back out and motions for me to follow her. They'd somehow moved me up in line and gotten us an actual room. It only took a few minutes to get us to X-Ray, where I had to hold Evie's arm in a million different directions. She was so good I can't even explain it. Not ten minutes later we got the official word that it was broken. I was kind of infuriated at first that daycare wasn't more concerned. But I was also thinking "Oh it's probably a sprain or a pulled muscle" so I couldn't be that mad. You don't expect a person of any age with a broken arm to keep trying to play afterwards. It was a rough month trying to keep a sling on that child, but it's done with now and she's back to herself.

The thing that's strange is that her self-regulation abilities seem to have multiplied 10-fold  almost overnight. She hasn't had a meltdown in a while. I haven't had to carry her out of any public places, including doctors and hospitals, restaurants, etc. She had a huge tantrum in Target because I didn't buy her a toy, but we've been back twice since with no toys and no tantrums. She's been such a joy. She has days where she acts out, but for the most part she's just been a wonderful little person who wants to play and cuddle. I had a conference with her teachers at daycare (which they run like a preschool) and they said the same thing. She's been much more calm and willing to participate. I mean she clearly still has ADHD and sometimes wanders around, but less so than she used to. They also showed me some of her "tests" for letters and numbers and things and said she's actually ahead in math and literacy. And that she's hilarious, sings all the time, and wants to be a doctor when she grows up. It's amazing for me to think of her at 2, barely talking, not knowing how to play with toys, not cuddling, not singing... and then to think of her at almost 4, ahead academically, talking non-stop, and using all her toys as designed. She knows her letters and numbers by sight. She knows the sounds for some letters, but her teacher admitted she thinks she knows a lot more. It's hard to test E because she wanders off after a few minutes. Which we're working on at "big girl" school. She's just so funny and sweet and smart and every time I look at her I melt. I just want to kiss her all the time, and sometimes she acquiesces. Sometimes she looks at me like I'm a moron, but it doesn't matter. She's my best girl.

I feel terrible sometimes because she wants to play ALL the time, and sometimes I am just. so. tired. I can't explain to  a 3 year old that mommy's kidneys don't work right so mommy doesn't have energy. I just want to sit on the couch and I feel like a failure to my kids for that. She wants to play games and make up stories (she has the most vivid, wild imagination) and I... can barely keep my eyes open. I have no doubt she knows how special she is, and how much I love her, but I wish I could be there more for that kind of stuff.

And the same goes for Andrew. Only with Andrew, things are more complicated.

We saw a neurologist earlier this month. At the beginning of the appointment he was leaning in the autism direction, but by the end he said he was not comfortable with that because he was seeing too much eye contact and looking for affection, so he went with Global Developmental Delay. Which is such a scary thing because there's no way to predict an outcome at this point. Evie technically had GDD as well, and now she's ahead instead of behind. But she also had some words, which Andrew doesn't. There are a lot of similarities, but a lot of differences as well, so at this point we are looking for a cause for the GDD. He had an EEG last week which we're told was normal. So that's a relief and one box checked off. Next is an MRI and a SNP array (a basic genetic screen). If those don't show anything, and we're hoping they don't, we're... stuck. When there is a designated cause, there is usually a predictable outcome for where the GDD will end up. When there isn't, you just have to wait and see. Which is terrifying for me, but I'd rather he didn't have something specific. Because then at least he has a good shot at catching up. People keep telling me stories of their kids with language delays and things, and it makes me feel like I'm being kind of an overbearing jerk for putting him through the testing. But at the same time, I'm his mother, and I KNOW my son. I know something is not exactly "normal" and I want him to have every opportunity to acquire the skills he needs. I want my son to live a normal life. I want him to be happy. I want him to have everything he wants and needs in life. I'll do anything to get that for him. And if it turns out that it was a simple delay - well OK! Great! But if not, I want to know I'm doing everything I can.

The truth is, I love Andrew... I don't even know how to say it. I can't quantify it. I look at him, and just like with Evie, my heart swells and I think "You are the perfect child for me". Any challenges are really inconsequential in the long run because both of these kids have stolen my heart and run away with it.

Here are a couple of sick pictures :( He saw 4 doctors in 4 days. The bottom one was right before his EEG when he was feeling better.

With Andrew, I spend most of my time holding him, cuddling him, and tickling. We do hand-over-hand playing with toys, but it doesn't make him laugh the way he does when he's on the floor and I give him little tickles. He'll hold his arms and legs out for tickles and it cracks me up because I do the same thing to Andy. And he (the baby) will just stare at my face like the sun shines out of my eyeballs or something. Like I'm his world. And I think I am. He always runs to me, lunging for me with outstretched arms, burying his little face in my shoulder, giggling at my snuggles and kisses. He still loves Chuggington, but it's hard to get him to play with most toys other than chewing on them. We keep trying. He'll get it eventually.

Sometimes I feel like my time with these two has just gone by too quickly. If the first 4 years have gone this fast, what will the next 4 years be like? Pretty soon they'll be 18 and 16 and out all the time and not wanting to hang out with their silly old mother. And I am already trying to prepare myself for that. For the teenage years, for college, for weddings... for a time when they don't just want to be with me all the time. Part of me wishes I could keep them 2 and 4 forever because I love this age so much. Because they love ME so much! But I know they have so much to go out and accomplish in this world. I just hope when they're older and out doing their own things, that they still know I love them in this... unfathomable way. This solid foundation of neverending love that I could never express to them in a million years with  a million words. To say they're my everything is not enough. They're... everything and more.

 

 

Vacation All I Ever Wanted

We did a thing! A vacation thing. We went to visit my parents in Florida for a week. It was fun but also stressful and... about as unrelaxing as a vacation can be. I suppose that's life with two small children. We flew in on a Saturday afternoon. The kids were pretty good on the plane. Evie was a little whiny but no big deal, and no one broke down through TSA this time. OK I almost did, but people were being so rude. The kids were fine. Andrew was happy to watch tv and squirm and grope his neighbor, but she said it was OK because he's little.

 

 

 

 

 

When we got there we just got everything situated and chilled out. It's tiring flying with kids! So they promptly put themselves in front of the TV. 

 

 

The next day we were still too tired to do much. The kids went to sleep really late, and we had a pool, so we just went there. Andrew loves water, but he doesn't like to sit still, so it's tough with him. I had to follow him everywhere and he kept getting out.

 

 

 

Evie thought she owned the pool and did not care who was in it or what they were doing. Including us. She just wanted to run around and she didn't have swimmies, so eventually we had to leave because she wasn't listening.

 

The next day we went to Juno beach. Evie LOVES the beach, but she is so drawn to the ocean that she has a hard time staying away. I think it meets a lot of her sensory needs, but we had to have 2 people with her at all times, and eventually we had to leave because she couldn't stay away and the currents were strong. I hated taking her away but it was getting dangerous and this child can't listen. Honestly I think she just doesn't understand that somehing that feels good and meets her special needs can be dangerous.

 

Andrew was happy just to walk. Honestly this kid is just a happy guy. He wants to run and climb and as long as he can he's cool. He usually likes water but he couldn't understand why the water kept chasing him, so he mostly stayed on dry sand. Here he is with my mom, who is NOT an ocean person.

 

 

The water there is amazing. It's so clear and blue. I can't wait to get back to the beach by myself/with Andy. And with the kids when they understand danger a little better.

 

 

The next day we took the kids to a playground. It's not really a November activity up here, so it was nice for them to get to play and climb and run. The park is huge and enclosed and has tons of stuff for Evie. She had a blast, and Andrew walked around until he found a patch of flowers to sit in, and he just sat and watched the world. He's so sweet.

 

 

 

 

Tuesday night Andy and I went to happy hour on the water and got drinks (he may have had a few too many) and delicious food. And 2 hours to ourselves.

 

On Wednesday we went to a lagoon, which we had to leave early because... surprise! Evie wasn't listening. She kept running next to that wall on the left and I didn't want her to fall onto the big rocks there. She refused to listen, refused to not climb the lifeguard tower... etc. She had the biggest of big meltdowns when we left. Again, because there's so much sensory fulfillment and she just doesn't get the concept of danger. Prior to that, though, she played in the water, which was only chest height on her, with no waves or undertow. Andrew and I sat in the shallow part and saw crabs and fish. This place was awesome.   

 

My mom and I took Evie to a nature center. She was great on the tram ride and inside the center. We saw this cool turtle named Sirena, and I got a Christmas ornament for me and a fake snake for Evie. I don't know why she wanted that but.. she likes it, so it's cool.

 

 

My dad and I went snorkeling at the Blue Heron Bridge twice. The first time we didn't see much because the tide went out before we found what we were looking for. The second time we saw the whole thing and got video I'm waiting for my dad to cut for me. He saw a stingray but I missed it. I did not, however, miss the jellyfish. They're so cool to look at but not so much to get stung by. Ow.

 

 

This guy is Blue Heron famous. He's everywhere. He's in pamphlets, and was there when wer were down in March. People try to take him out further to keep him away from all the kids that pick him up, but he's having none of it.

 

My mom and I took Andrew to Juno pier on Friday. I was really hoping to see some huge fish or a shark fin, but no luck. It started storming as soon as we got back in anyway.

 

 

He did, however, get to use a super cool chopping cart, which, as you can see, he enjoyed.

 

This is Evie and daddy on the plane home. We were in the first row so she didn't have a tray but they made it work.

 

And this guy? Well... see for yourself.

 



Pumpkin Patch and an Update

This weekend we took the kids to the pumpkin patch with our friends Eric and Caitlin. It was interesting. Andrew loved it. He did an amazing job walking given all the obstacles, and he was so happy to be outside. Evie fell in love with the slide, but didn't understand taking turns, so we had to tell her to stop going up there, and she had a meltdown. That part kind of sucked. Three is a tough age for any kid, but especially a kid with sensory issues. I think slides really tick some boxes in her daily sensory necessity list, and taking that away was rough, but she can't just do anything she wants because she needs sensory input. Still, we got some good pictures and both kids were great at dinner afterwards. I mean honestly Andrew is always so well behaved, and Evie isn't badly behaved normally. She's just 3 and we really need to think about the things that are going to occur when we go out. Most places aren't an issue, but if we go somewhere that she can get sensory input, we need to make sure we have ample time to transition her into leaving!

 

 

 

 

The kids have been tiring us out a lot lately, but is anyone surprised? We have two kids less than two years apart. It's wonderful, but exhausting. And unfortunately Andrew seems to have something going on neurologically. We think he may be having absence seizures. The other day his SLP and another therapist were there when it happened, and confirmed I'm not crazy. They're hard to pick up on because they're so short and kids are so easily distracted, but this time he was sitting in the high chair and just stopped responding in any way. He just stared into space and nothing could break him of it. They were very concerned and told me I have to discuss it with the neurospychologist next month.

 

I'm worried about my little boy, but he's happy , and that's the most important thing to me. Yesterday when I came in the house he just ran to me and put his arms up to be held, and I could've melted into a puddle on the floor. He's such a darling little one. We just need to figure out what's up before I lose my mind. 

Long Overdue

I wish I could say things were going along swimmingly in my life, but as you've probably come to expect, they are not. I suppose I'll start with me. The symptoms of my kidney failure have been getting worse and worse. It's hard for me to get to work on my best days, and nearly impossible on my worst. Some day it's hard to walk from the car to the building. To be fair, it's a REALLY long walk. I'm not a lot of help around the house, but I try. I have to save all my energy for my kids, and sometimes there's just not much left. I got some tests done recently and my kidneys are functioning at 22% so I'll be going on the transplant list shortly. They were holding steady at 24 since December, but between July and September dropped, and I think that's going to continue. To be honest, I'm Ok with it. I'm terrified, but I also feel like crap 24 hours a day, and I'm ready to start a part of my life where there's at least hope that I'll feel better. I know 22 isn't the worst kidney function, but it's pretty bad, and the specific disease comes with its own set of issues. Needless to say I'm on edge, so husband and I have been fighting and I had to start back with the therapist that helps with my OCD. Stress is a part of the package for me right now... for us. We just do what we can to get by. It's not easy being on the brink of an organ transplant, working full time, and dealing with 2 toddlers. There are also some issues with Andrew, but I'll give you a break from the crap and start with Evie.

 

Evie is my sweet, smart, beautiful girl. She's still in a half day prep program for school, but at this point it really seems like she's just got bad ADHD and some sensory stuff. She's completely caught up in speech, she seems totally on track in social stuff and has friends. She's smart as a whip. She knows a lot of her letters by sight, all of her numbers. She did addition the other day! She knows every color under the sun and all her shapes. She has outbursts sometimes. I don't want to call them tantrums because I don't think they're completely manipulative, but I don't want to call them meltdowns because it doesn't seem completely uncontrollable either. It's like.. a combination of being 3, getting easily overwhelmed by sensory things, and needing a schedule due to the ADHD. She's more flexible than I'd expect in some areas, but she really clings to some things, like going to big girl school or seeing her grandparents. She's going through a phase where she doesn't want to fall asleep without someone, so I've been snuggling her to sleep, and then in the middle of the night she comes into my bed. It's so sweet. I don't always get the best rest, but in a few years she won't want to do it anymore, and hearing her tiny voice say "Mommy I need to lay with you"! is pure joy. She's very into her mommy and princesses (especially Rapunzel) and the colors purple and pink. She still loves Frozen, she really likes Paw Patrol now, and she likes to to letter flash cards with mommy and Mickey read and learn books with daddy. And she FINALLY let me put her hair in a ponytail and she's so cute I cannot even stand it. She's also in a "I'm a girl!" phase. Somehow she feels the need to tell me regularly. I'm pretty sure I figured that out.

 

 



 

 

Andrew is the other light of my life. I'm pretty certain God hand-picked these children for us. Andrew is truly an angel.  He's sweet and special and he loves me so much. His world revolves around me. And Chuggington. He likes figuring out how to make things work. He likes cause and effect, and turning things on and off. He also loves climbing, walking, and trying to run. But that's where problem number 1 comes in. He trips over his own feet when he tries to run, and I noticed his ankles bend inward when he walks. We took him to an ortho and found out he has hypermobile joints. This makes his ankles unstable and his feet flat and he's going to get fitted for braces and use those until his joints stiffen up some. After that, the next stop we were advised to make was to a geneticist. I thought with Evie having had issues it might be a good idea and he agreed. Evie is also hypermobile, but hers seems to just come in the form of flexibility. And I never thought about this, but mommy is also hypermobile. My kneecaps pop out of the socket with relative ease for almost no reason due to Osgood-Schlotter's disease. So we're going to check out a geneticist. I suspect to test us for Ehlers-Danlos. At the same time, Andrew still isn't talking, still isn't eating table food (he will eat purees) and still won't answer to his name. He's engaging and fun with me, but it's just... it seems like he can't hear. We got his hearing tested and he CAN hear, but I don't think his brain can process the sounds. I think it's some sort of auditory processing problem, but they can't test that until he's older and can communicate. So I wonder if we should check out a developmental pediatrician or a neurologist, but since the ortho advised geneticist we're starting there. The problem is she can't see us until May, so we have to twiddle our thumbs until then. He does have 3 people that come to the house for him, but it doesn't seem to be helping, and my patience is wearing thin. I want my little boy to have what he needs. The good news is he is SO HAPPY. He is always laughing and having fun and he loves to get hugs from his mom and snuggle on your chest when he's tired. He babbles incessantly and he's just a joy to be around. I just want him to have every service/device/whatever he needs to reach his fullest potential. And waiting sucks. This is him last night fresh out of the bath in his dino PJs. The look on his face is 100% me lol. It's hilarious.

 

 

So, back where I usually am. Thrilled to have AMAZING babies, thankful to God they are in my life, but in pain and waiting for things to turn around. Hopeful... hopeful for all of us that things improve. We could use it :)