Friday, August 12, 2016

Change

I'm not great with change. I don't know how that really happened. I've certainly made plenty of changes in my life, some even altering the course of my life (career changes, marriage, motherhood, etc.), but I still struggle with being a 40-year-old who has adjustment issues.

With six household moves in 10 years of marriage this month, I should really be better with change. However, the truth is, I'm not. We're nearing a period of great change in our household. Thankfully, we're not moving!, but we are at a big crossroads for Piglet: the start of Kindergarten. When did he become old enough to go to school? If I thought that my middle-of-the-night thoughts ran rampant over my mind before, I was not prepared with how they've taken off the past few weeks. I'm worried about his food allergies, and have multiple forms I need to get filled out by his doctor to keep his medicine stored at school. I'm worried that he won't adjust well to starting school. I'm worried that he won't make friends (but really, who wouldn't want to be friends with the greatest boy in the world?) We've been buying backpacks and lunchboxes and school supplies, and while he's excited with the process, I've noticed that his tic has reappeared. My first thought was: what is making him anxious? Am I going through this school preparation process too fast? Am I talking about Kindergarten too much? What if I'm not helping him adjust to this change in the way that works best for him. How have I not figured out what works best for him by now?! What if I'm inadvertently passing my insecurities onto him? Ugh, why does change have to be so hard?

The girls have their own bouts of change coming up with the addition of preschool in their lives, but for some reason, that doesn't seem quite as scary for me. It's most likely because we've already been there, done that with Piglet. Also, they have three years of preschool before officially leaving the nest for public school. However, when I think about dropping Piglet off for the first day of Kindergarten, it seriously makes me catch my breath. My thoughts go sprinting down the road to all of the other milestones to come. How has this all happened so fast? I've found myself giving all of the kids way more physical affection the past few weeks, just because I irrationally feel like if I hug them tight, they will stay little forever.

I sit at some point every day and think of how my life has changed since I started down the road to parenthood. What once seemed like an impossible dream, only reachable by scaling some of the highest mountains, is here. I'm living it. Am I doing it justice? Am I giving my kids the best of me every day?

Most of the new readers to my blog have found me through infertility searches. A few nights ago, after reviewing my most recent posts, I started wondering if I'm doing my blog justice. Am I telling the authentic story of what it's like to be parenting after infertility? My fear is that someone in the trenches of family building would come along, read my words of struggling as a mother, and immediately label me as selfish, or inadequate, or undeserving. Truthfully, that's how I often see myself when I really look at all that I have been given. But what I don't write about as much is the joy, of which there is a vast amount. Last night, the kids were watching a movie while I was getting dinner ready. BH had just gotten home from work, and the scene playing on the TV was one with wild music that immediately got the kids dancing. As I looked up and saw BH join in the fun of twirling the girls, along with the addition of his own crazy, erratic dance moves, it hit me: this is the most unbelievable gift that I have ever been given. Those four people, the ones that can drive me to the brink in a quick minute, are also the only ones that will eventually bring me back down to stable. How can I not want to shout that joy to the blogosphere?

Why is it hard for me to write about all of the happy stuff, when I clearly have no trouble letting loose with the struggles? For that, I have no answer. What I do have, however, is the realization that I don't think the world needs more of my negative. I don't need more of my negative! The world needs an abundance of happy and positive, just as I and my family deserve a mother and wife who works on building them up, not complains of how they bring her down. Right now, I'm not sure how to make that work in this space. I feel drawn to write when I need to get something off my chest, not when I want to share the happy. Thus, amidst all of the other current change in my life, I'm making a change here and taking a hiatus. I'm not sure how long it will last. It may last a few months, it may last forever. I honestly don't know. What I do know is that the best way to combat the struggles of change is to go with the flow. Embrace the newness. See what this new direction has to offer me. I wish you all the best.

Wednesday, July 20, 2016

Life in These Parts

Wow. It has been a long time. I think on a nearly daily basis about updating the blog. Then, one thing or another comes up, and I move on to something else. We have been, in one single word, busy!

We took a family vacation to Disney World in April. We went in August of last year, when it was incredibly hot and incredibly crowded, so this time we wanted to take a trip when the weather was more bearable and there were hopefully fewer crowds. Unfortunately, it appeared that the entire state of New York was on Spring Break, so the crowd theory didn't pan out. Weather, however, was top notch! Not a speck of rain in six days! The trip started out with a major adventure before we even left the city, however, as Piglet woke up with an earache that had him crying in pain. This is the kid who broke his arm when he was two and waited for a good three hours before the ER doctor could set it. He cried when it first happened, then nothing more than a whimper for the rest of the time. So when he cries out in pain, and it goes on for a while, I know it must be excruciating. Therefore, our first stop on our trip was to the urgent care, since it was Saturday, and they diagnosed him with a double ear infection. This was his third ear infection since January, so it took forever for the doctor to figure out what antibiotic to try next, and then a longer wait to get the prescription. Thankfully, the antibiotics did their thing after only a couple of days, and he was able to enjoy his vacation.

Anyway, we finally started our journey about noon. The drive is about 14 hours, and we do it in two days. By the time we rolled into Orlando on Sunday (after a realllly quick visit with my brother and his family in Northern Florida), we were ready to let loose. All three kids loved the pool, which we visited every single afternoon, and we had a great time at the parks. The girls were old enough to be able to walk onto the rides, rather than having to be carried, and we stuck with our fail-proof plan of doing rope drop every morning, leaving at lunch for the pool at the hotel, and then back for dinner and a few rides before bedtime. We tried to do one character meal a day, instead of waiting in line to meet the princesses and Mickey and his pals, and Piglet and K loved that; L, not so much. Piglet was very adventurous and rode many new rides this time with BH, including all three of the "mountains", while his sisters and I did some extra people-watching.

We got back into town the first week of May, and it feels like we've been going non-stop ever since. Piglet had a follow-up appointment with the allergist the week after we got home. Given the development of another ear infection since we last saw her, she concluded that her original theory was correct, and that he was suffering from chronic sinusitis. She immediately put in a referral for him to see the ENT. That appointment took place at the end of May, and after about five minutes of me discussing his ongoing problems since October, the ENT recommended ear tubes and removal of the adenoids. He had the surgery two weeks ago. The morning of, he had a runny nose, which he always has, and the nurse wanted to know if it was a cold. Thankfully, the ENT and anesthesiologist both had little concern with the symptom, since it is chronic, and they proceeded with the surgery. Everything went great, and between both procedures, he was only under a little over an hour. The ENT said the adenoids were causing nearly 100% blockage, and he felt this would do the trick for the chronic sinusitis. Almost immediately, all of his symptoms resolved. There's been no cough, no runny nose, and thankfully, no tic (which the neurologist thought was probably a learned response because of the illnesses, and not something more serious). I'm disappointed in myself that I let his primary doctor continue down the path of it being allergies for so long, but I'm thankful the allergist went outside the box and recommended the ENT. Here's to Kindergarten being a year of good health!

In news of L, she's doing amazing. We had her IEP at the end of May and she was accepted into the classroom-based preschool program. Last week and this week we've been doing a prep class (I've been calling it preschool boot camp!) which lets the kiddos experience the preschool setting for 1.5 hours each morning, while the parents get to listen to folks from the school district, and also to talk with each other. It's been such a great experience, especially bonding with other parents in the same situation, and L has improved every day. I tend to downplay how isolating it can be having a child with delays, especially since her siblings are developing typically, but the truth is, it's hard. I've been following her therapist's recommendations to do more things in the community to expose her to other kids, since she's going to be in that situation at school, but it's not been without it's own set of challenges. We're currently doing a class at the community rec center that has a soft playroom (like Gym.boree) and she loves the physical nature of it. The struggle comes when they transition from play time to circle time for the last fifteen minutes of the class. We did 10 weeks of the class in the spring, and by the last class she had improved so much that she was participating in nearly all 15 minutes of the circle time. Then, we took a month off, came back with new kids and a new teacher, and it's been a tough transition.

The thing that I find the hardest in parenting L is when people inquire about her behavior. She will do things (i.e. throwing herself on the ground when frustrated, screaming and turning her head if she doesn't want to talk), that look kind of typical of a two-year-old, but are actually much more extreme. And any parent, or anyone with experience with toddlers, knows this. It makes it doubly complicated (no pun intended) because there's already the curiosity factor of trying to determine if she and K are twins. So when I get the questions, or even worse, the people that think they can do it better and try to model techniques to me, it can really ruin my day. Just today, a mom in the soft play group tried to engage L with a bean bag. This was after I had tried more than once to get her to participate in the activity, in a way that her therapist and I have been working on to encourage her, yet not pressure her. This fellow mother, who should have been dealing with her own two-year-old, took it upon herself to leave her son sitting in the circle, walked over to L, and tried to hand her a beanbag. L did what she always does when she's overstimulated: She screamed "No," and threw herself on the ground and cried. The mom shrugged, laughed, and said to me, "I just couldn't help it. It's the preschool teacher in me." And immediately, as the defense mechanism kicked in, I found myself explaining that she has some developmental delays, and this class is one of the strategies we're trying.

Now, here's where I get tetchy. Since I now have experience with a child who draws stares, and truly believe in the uniqueness of every child, I personally would have dropped the conversation at that point. What works for mine may very well not work for yours. (Actually, I never would have presumed my help was wanted in the first place, but that's another story altogether). Maybe I would have said, "I see. That must be hard. There's always next time." Instead, this woman followed up with, "Oh, was she a preemie?" Given that she's not, the situation (I'm assuming in this woman's eyes) was becoming more dire, so I then found myself explaining the hearing loss that went undetected, the tubes, the speech and developmental therapy, and the plan for starting special education preschool in the fall. And I had to do this while we're all sitting in a circle, and every other parent is watching every single thing I say. And it sucked. Hardcore. The takeaway I finally realized today is that while that was one single conversation in this woman's life about my daughter, it's one of countless I have with people. Every. Single. Week. It's truly emotionally exhausting to feel the need to have to constantly explain. It's something I know I need to work on, because I don't owe anyone an explanation.

Instead of letting it get me down today, though, I thought about all we have achieved since March. L is saying 3-4 word sentences! She is saying every night at dinner, "I want cookie, Mah-Nee!" She's answering yes/no questions. She's singing songs. She's imitating dialogue she hears from Disney movies, or from everyday conversation. She is a rockstar! We had her annual IFSP review, and with the exception of speech, she is no longer more than 25% delayed in any area. This is huge! We've gotten her involved with private speech therapy, and we're in the process of adding private occupational therapy at the same center. She is a whole new child. She's still struggling socially and emotionally, but given she spent over two years of her life with a hearing problem, one that frustrated her and caused her to isolate herself, I am astounded at the skills my little girl has developed in such a short time. We have the great benefit of her having an October birthday as well, so she will be eligible for special education preschool for three years. I may be thinking too optimistically, but given my conversations with her therapist, who also agrees, I think she's going to be ready for mainstream classroom instruction by her third year of preschool. Only time will tell, of course, but if there's one thing I know for certain, it's that we've not left any stone unturned in getting her all the help she needs.

Thus, that brings us to K. The one I worry about the least. The one who loves fiercely, as shown through her multiple hugs and kisses every day, but also the one that can make me want to pull my hair out at her sheer two-year-old obstinacy. She lives her life in hyper-drive, where she is always going as fast as she can, until she crashes just as quickly. She also is a good sister to L. She puts up with a lot of L's unpredictable behavior, more so than the rest of us, especially because they share a room, but she does it with love. That's not to say she doesn't do her own bit of yelling back at her sister :), but she always tries again to engage her in shared fun. Her biggest hero is Piglet, and they love to play together. She's also our little athlete. Throwing balls, climbing on the playground, riding her bike - the girl cannot get enough physical activity. I'm hoping to enroll her in some sort of sports program this fall, just because she enjoys it so much.

A few months ago I became concerned that K was having very loose stools, and often more than two or three a day. After the intussusception in November, I was worried that maybe there had been some permanent damage to her bowels. My father also has Crohn's disease (and my grandfather died from complications of Crohn's back in the 50's), so I was worried about that being another possible cause. Plus, given the fact that at nearly three years old she's probably 26.5 pounds sopping wet, I finally brought it up with our doctor. She immediately referred us to a pediatric GI specialist. We've gone through the stool sample tests, which unfortunately have come back inconclusive, as there was increased protein in her stool. The GI doctor does not think it's Crohn's, as to present with symptoms this early in life is rare, but he can't rule out IBS, ulcerative colitis, or Celiac's disease. So, last Saturday she had SIX vials of blood taken to test for Celiac's, as well as for malabsorption of multiple vitamins and minerals to determine what else might be going on. On the plus side, she doesn't appear to be in any pain. It's just worrying due to her low weight and the fact that the poop issue is chronic. Thus, we find ourselves in a round of doctor/laboratory roulette for K.

Yeah, in a nutshell, we've been busy!

Tuesday, March 29, 2016

The Marathon

L had her ear tubes surgery on St. Patrick's Day and came through it with flying colors. The Eustachian tubes were filled with very thick mucus, so it was completely obvious why she hasn't been hearing well, nor developing at a faster pace with her speech. They completed the ABR test while she was sedated (that was the time-consuming part at just over two hours), and they determined she has perfect hearing in her right ear and just one step below perfect in her left. The audiologist thought the left ear was also still draining and said she wouldn't be surprised if it were also perfect. The bottom line is there is no treatment for the level she's hearing in the left ear, since with both ears in play she hears within normal limits, so we don't have to worry about any other steps. We'll continue to monitor her hearing yearly with the craniofacial team, which we will see again in December, but for now, we are so relieved that it's over, and I have so much hope that we will get her speech back on track.

We are starting the process of getting her enrolled in the public school's special education preschool for next year. I have an appointment on Monday to provide all of the identifying and developmental information, then she has her assessment in mid-April. We're hoping to have the IEP meeting before the end of the school year so she can start right away in September. It's exciting and overwhelming all at once. She and K are both enrolled for the preschool that Piglet's currently attending. As it stands, I'm guessing I will have K there on her own two days a week, and L will be in her school the other three. That means I'll always have at least one of the girls with me in the mornings. Not ideal for me, but I think they each need their respective schools for their own development.

Additionally, we met with L's EI therapist, whom I love, for our weekly session. I was expecting her to touch on the fabulous results of the surgery, but we really didn't discuss it. Instead, she provided me with a litany of items I need to start working on now; the hearing has been restored, so let's start fixing everything else going on with her! That was the first session where, when it ended, I felt less hopeful than when she walked in the door. We have been with early intervention for over a year in two different states. We're making good progress, but I realized we have so much more to conquer, and that reality hit me like a ton of bricks. I'm not expecting her to blow sunshine and rainbows all over our house while she's here, because that's not useful at all, but I also wasn't expecting her to tell me that L is still that far behind developmentally. I'm considering getting her enrolled in private speech therapy as well, since EI in our state will only work on one sub-specialty at a time. Her overall developmental delay has trumped speech, so we see a developmental therapist. At this point, I don't want to waste any more time waiting for speech therapy to begin.

In the meantime, I've been dealing with what I think is a tic that Piglet has developed. It's not a recent occurrence, as I first noticed it back in the fall. In October, he started with a constant sniff. Seeing as he's had a ton of trouble with his allergies and also picking up every virus that walks through the doors at preschool, I chalked it up to a natural, needed sniff. In December, when the sniff disappeared and was replaced with a constant vocal tic (he repeatedly will say "huh" or "what"), I started to get a little more suspicious. Not suspicious enough to mention it to his doctor, but enough that whenever he would start up with it, which primarily was with visual stimuli such as the iPad, TV or reading books, I could feel the little jolt of anxiety that something was wrong.

Fast forward to mid-February (after he had a double ear infection and a round of antibiotics for his latest creeping crud, mind you), and his teacher mentioned that she felt he had a bad cough that needed to be looked at by his doctor. Well, I knew what "cough" she was talking about, and I tried to tell her as discreetly as possible that I thought it was a tic. By this point in the life of the tic, it had become a throat clearing/sometimes cough, followed by the "huh" at the end. It's annoying to me at home, so I imagine it's extremely disruptive in the classroom. (However, can I just add, I was totally taken aback the first week of school to realize that his teacher provides daily updates at the door while all the other parents are waiting in line behind you, all within total earshot. I don't want to know that Susie is failing with her scissors skills, or that little Joey can't identify his letters, and I don't want the other parents to be armchair diagnosing my child either. I purposely now get in line as late as possible, so my personal business remains my own. His teacher is in her mid-70s, so maybe that's the norm for her, but I find it annoying and lacking in professionalism.) Anyway, I called her at home later that afternoon and talked about it more. She said she has not heard the verbal tic, but that the coughing/throat clearing was so bad that she gave him water and almost called me to come pick him up. She said she'd try and listen for the verbal tic, but to this day, she still claims she can't hear it. Perhaps she's the one that needs the ABR test?

That afternoon, I began taking videos of the tic. I emailed it to my sister who is a Kindergarten teacher. She confirmed what I believed, which is that it looks like a tic to her. L's therapist was here a few days later and I mentioned it to her. Thankfully, he was doing it during the hour, and she, too, said it's a tic. She suggested I start keeping a log, which I had already started doing, to look for the pattern. Then, we met with his doctor. She also agreed that it's a tic. While he is struggling with constantly being sick, and it perhaps started as a combination of symptoms from a cold that turned into a tic, it's definitely not just cold-related. So, we have an appointment with a neurologist coming up in two weeks. I'm not sure why we're starting there and not going straight to behavioral health, but I'm just going where they tell me at this point.

Of course, his teacher is not in agreement with me as to the nature of the "cough," and nearly every day she'll tell me how sick he sounds. She suggested I take him back to the doctor (which I did, and thankfully, his doctor gave me a note which pretty much said "it's not contagious, back off") and also that perhaps he needs an adjustment to his allergy meds. Well, I had him at the allergist last week, as it was time for his annual appointment anyway. She suggested that he does still have something bacterial going on and prescribed 12 days of antibiotics.We discussed the possibility of asthma, as that's what his doctor thinks is going on with his constant colds and illnesses, and she said no, it's chronic sinus infections. So here we sit - his teacher thinks I'm not taking care of his medical needs at all, his doctor is telling me it's just asthma and to increase his Albuterol when he gets a cold, and the allergist is telling me it's chronic sinus infections that need to be treated with antibiotics. Meanwhile, I'm driving all over town to appease everyone, and we still have no concrete answers or solutions for him getting repeatedly sick, or for the tic.

The past month has been so overwhelming. As the kids get older, the list of their problems/issues seems to be growing exponentially. I thought I was tired and needed a break when they were infants. Geez, what a cake walk that feels like now! I came across a quote somewhere along the way that said parenting is not a sprint, it's a marathon. Wow, did that hit home. I totally feel that right now. I feel like I'm in the stage of the marathon where it's cold and pouring down rain, and I'm slowly trudging up a hill through this current mile (mind you, the longest race I've ever done is a 10K, so I know nothing of which I speak!) Anyway, I think it's time for me to get some new running shoes, possibly an upgraded slicker to keep me warmer and drier, and a better attitude towards my training, as it's going to be a long race. However, I do still have hope that the next mile just might be a bit of a flat stretch. (Of course, I've had time to post this today since my car is in the shop having a mysterious noise analyzed. Being stuck in my reality and unable to escape makes it a good time for analysis!)

Friday, March 4, 2016

The Quest for Quiet

It's no secret to regular readers of my blog that I'm an introvert. I am most definitely recharged by spending time alone, preferably even in quiet, without the ability to hear anything other than what I select as necessary. However, until now, I didn't realize how much my introversion would be tested once I became a parent. The level of discomfort I feel dealing with others all day long can make peeing in private feel like it's in its own stratosphere. Couple the reality of parenting three toddlers while living in a major metropolitan area, and I feel like there is never enough space to escape.

Over the course of the past two weeks the girls have decided to stop napping. I cannot tell you how disruptive this has been not only to their general level of pleasantness (read: pleasant is no longer an adjective I'd use to describe them after 2pm), but also my general contentedness with the complexity of being a mom. Not only has it disrupted their routine, it's disrupted the routine of the entire household. Before now, I could put them down for a nap, they'd get quiet after about 15 minutes, and then I could generally rely on them to go to sleep. I would then have about one hour of relative quiet. Piglet practiced his handwriting - we're fervently working on him learning to write his name, which he's improving on daily - and then he would get the iPad to play games. In the meantime, I could read my iPad, prep dinner, maybe work on some crafts, enjoy a couple cups of coffee, etc. The point being: I had at least an hour to myself to choose what I needed to do to recharge and get through the final push of the day. Oh, how I miss that glorious hour.

It all started with L climbing out of her crib several weeks ago. In turn, she was super proud of herself for her major leap towards becoming a big girl, and then after about a week, the reality of her being a two-year-old who can test limits set in. Now, whenever I go to put the girls down for their nap at around 2:30 pm, both she and K balk. L will spend her time playing a cat and mouse game with me. She'll climb out of her crib, I'll go back in and tell her it's time for a nap, and she'll get disgruntled at being placed back in the crib. Then, five minutes later, after I've returned downstairs to do something else, I hear the sound of her feet hitting the floor again. It was fine for the first week, because K would watch the antics for a few minutes and then would give into her sleepiness and would nod off. However, K is now egging her on. It's like she's the Harry Caray of their bedroom. She's more than happy to give me the details of her sister's playbook, all of which I can hear as a play-by-play over the baby monitor. The all-too-common, "No, L, don't get out of your bed!", is  followed closely by the, "Mommy, L is out of her bed!" Ahhh, the glorious bond of twins.

L's therapist suggested that I continue to put them both down, let K drift off to sleep, and then once that happens, give L a box full of books to read quietly for the hour. L has never met a book she doesn't love. That worked great for about two days, but even that jig is up. L now wants to leave her room and explore the upstairs, which resulted in me being the warden outside their bedroom door and shuffling her back into her room to read quietly. Alas, over the course of a week, K has figured out she's missing out on everything by taking a nap, so she's decided to not go to sleep either. Super. Fun. Times.

I've read from several people in various forums that once they can climb out, it's no longer safe for a crib. However, I cannot fathom putting them in toddler beds yet. Thankfully, because they are now both exhausted at bedtime, there is little complaint when bedtime rolls around. They hit the sheets and I don't hear a peep from them for 11 hours. Instead, I've decided to place a gate in their doorway. The new normal is I let them read, play with their dolls, and spend time together in their room. I still hear everything that goes on, and they are most definitely not asleep, but it gives Piglet and me a one-hour break from coping with two rambunctious, two-year-old maniacs. It doesn't give me the quiet that I so desperately crave, but at least I can have them corralled to one spot, and I don't have to worry that they're destroying the house.

The problem, though, is that it has made me incredibly edgy outside the house, too. Last week there was a parade at Piglet's school for their USA Day. It was very cute. They paraded around the gym to "The Stars & Stripes Forever", waved their flags, and then recited the Pledge of Allegiance and sang patriotic songs. It was beyond adorable. It was also super crowded and super overwhelming for me. The whole thing lasted all of 20 minutes, but combined with the 5 minutes standing around before it started, and the 10 minutes of pick-up time after the event, and I was done being pleasant. I was done smiling and chatting about inane topics, and I started to panic and have trouble breathing. It's been a while since I've had that overwhelming feeling of dread wash over me, but when it starts, it comes on fast and heavy. It took all of my stored- up energy to get us all to the car and back home, where I then started prepping lunch. By the time nap time rolled around, I was so ready for a break from the chaos and the need to interact with anyone for any substantial amount of time that I could feel it bubbling up and over. Unfortunately, this happened to coincide with the first day of the No Nap Revolution.

Thus, I'm now at my current situation. I'm an overwhelmed mommy when their 8:30 pm bedtime rolls around, and all I want to do is just curl up and be by myself. Unfortunately, that's often when BH decides he wants to talk. Or watch TV. Or just spend time together. You know, things you do as a healthy married couple. And all I want to do most nights is sit on the couch and catch up on my backlog of Grey's Anatomy episodes, or read some blogs. Cue overwhelming guilt. I'm doing what's best for my marriage and always choose to spend time with BH (thankfully, since he's an introvert too, that sometimes only lasts about 20 minutes on most nights), but it's still a commitment. A commitment that still requires effort and sacrifice on my part. However, as an unexpected bonus, it does seem like we both have this secret sense of duty to dedicate at least a few minutes a day solely to each other. I think we both realize the importance of nurturing our relationship, regardless of how much we both may want to just escape for our own mental health, and I have hope that this stage of life will pass without too much damage to our marriage.

As I do with most topics that are challenging to me, however, I've started to research. I came across a website that is speaking my truth. A group that feels very much like my tribe. The website Quiet Revolution has tons of stories about being an introvert in a world where extroverts thrive. I found myself nodding along to so many of the stories written by introverted parents, and it helped me to feel so much less deficient in my need for just a tiny bit of space each day. I'm now on a quest to figure out how that's going to look, given the shakeup of our routine, but I'm confident that it will eventually work itself out. I'm going to add this topic to the list of "Things You Didn't Know About Parenting Until You Became a Parent" file, and hope for the best. Wish me luck. And quiet. I could definitely use a lot more quiet.

Friday, January 22, 2016

Hunkering Down

Well, we are in the bullseye of the epic snowstorm making its way over the east coast. This will be my first blizzard that I remember. Being a Midwestern girl, there was the Great Blizzard of 1978 that my grandparents and parents always talked about fondly (since these things have much happier memories after some time and distance). I was two, my brother just shy of four and my sister nearly seven. They both remember parts of it, I've got zero recollection. It's been coming down for about three hours now, and I think it's going to be the real thing.

The obsession with watching the weather report over the past few days, however, has had me chuckling to myself at just how amazing our transient life can be. We've survived a hurricane, in a roundabout way. We were living in the south for the year, having not been able to sell our home before having to relocate. As random luck would have it, Hurricane Ike took a very wayward path from the Gulf of Mexico to the Midwest and ripped a good chunk of roof off of our vacant home. Then, when Piglet was three weeks old, a wildfire came barreling towards our tiny town in the Southwest, necessitating a trip to temporary lodging for a week, while thankfully, our home and town were unscathed. Couple that with the insane rain we had this past summer after we first moved, and I tend to think: how much worse can it be to make it through a blizzard? (I knocked on wood after typing that, lest I find out exactly how bad!)

The only thing I fear is a loss of power. The conservative numbers are telling us we will get 18 inches by the end of the night tomorrow. The more catastrophic numbers have us up to 30 inches. We also have the virus of doom ripping through the house right now and 2.5 sick children. Piglet picked it up from preschool about 10 days ago and has had a horrible cough ever since. He was nice enough to pass it on to one sister first, who then two days later passed it on to the other sister. A visit to the doctor on Wednesday for K (kiddo number two to be infected) and we're told it's just a bad virus that takes time and R&R to clear up. We've also put everyone on Zyrtec (Piglet takes this daily anyway for his allergies) as she thinks the post-nasal drip is maybe being made worse by allergies. So, we've had snotty, hacking children, and in most cases more than one at a time, for the past 10 days. I'm hoping they are on the mend soon, because being stuck inside for days with two sick and whiny two-year-olds just might have me volunteering to shovel the driveway. In flip flops!

In other news, L's appointment with all of the specialists last month went very well. The great news is we do not have to see the entire team annually, as it appears ENT, audiology, and pediatric dentistry will be the necessary ones. The audiologist repeated the hearing screen and determined that she has fluid in her middle ear, which is definitely causing mild hearing loss in both ears. The ENT suggested tubes to keep the fluid out of the middle ear, and we of course agreed. The only problem is they can't work her in for surgery until March 17. They will be putting her under for the tubes, then while she's under anesthesia, they will do a complete hearing test to verify that it is just hearing loss due to fluid, and not any other congenital or structural cause. Because it requires longer OR time for both specialties to work their magic, there is only one spot per week that they have available. It's frustrating, but I'm trying to stay positive and focus on the fact that we've already made it through one month of waiting, only two more to go!

However, I can't tell you how relieved this development has made BH and me. Everything now makes sense. The speech delay, the frustration with her siblings and us, her periods of escaping to read her books, as the lack of understanding her environment must have been so overwhelming for her. We had her hearing tested last March, and at that time they ruled out anything other than potential mild hearing loss in one ear. They suggested we retest over the summer, but we moved, and then her speech and nonverbal communication took off with her new developmental therapist, so I put it off. I'm feeling some guilt about that now, but as has been explained to me, she can hear, it just sounds like she's hearing people talk underwater, or very muffled. They also assured me that this is the reality she knows, so she doesn't realize how much better it will be once it's fixed. It's a small comfort for me, but it does help me beat myself up a little less. The astounding thing is she's still taken off with her language. She's saying new words and phrases every week, and as her therapist said to me yesterday, "If there is one difference I see in L between the summer and now, it's that she has so much more joy in her life." And it's true. She is so much happier and engaging than she was just six short months ago, and for that, I am so eternally grateful for her amazing therapist.

We've already started talking about transitioning her out of early intervention and into the school program. It makes me tear up just thinking about having to say goodbye to her therapist. This happens on her third birthday, which isn't until the end of October, but it's time to discuss preschool. I already reserved a spot for the girls at Piglet's preschool for next year. They have a program for 2 1/2 year olds that meets two days a week. For the developmental preschool in our county system, she needs to have a delay of at least 25% in two or more areas. This is where it might get complicated. I don't doubt that she will still qualify for speech, as I think it's going to take time for her speech to improve following her surgery, but I doubt she's going to qualify for fine motor or gross motor. Unfortunately, she would qualify for sensory issues, but that is not considered one of the assessment areas. There is a chance that her therapist and service coordinator could get her to qualify by asking for a spot, if one's available, because of the sensory issues, but it's not guaranteed. If it works, though, she can go as many as five days a week, or as few as one. The best case scenario would be she gets in and can go to the church preschool two days a week and the public school preschool the other three. What would be even more incredible though is if we could K into one of the two "peer" slots for a typically developing child, and then she and L could do both schools together. I'm going to a meeting about it on the 31st, and then L will have her evaluation sometime in April, but at the very least, they will at least have two days a week of preschool. Whatever will I do with that extra six hours of time per week. (Sarcasm intended)

Saturday, December 12, 2015

In Praise of Archiving

Two events happened the past couple of weeks that made me thankful that I have used my blog for recording events that, for the most part, are probably only interesting to me. I tend to put things down for posterity, since I'm total crap at keeping a baby book for any of my kids. For example, I have exactly three pages completed in Piglet's scrapbook, and he's four! However, I've used my personal password protected blog and this blog to keep updates for myself to read later, when I'm feeling the need to reminisce. Thankfully, my diligence at writing things down because I don't want to lose those memories is proving beneficial in the long run.

L met with the craniofacial surgeon the week of Thanksgiving. The good news is she does not have Crouz.on Syndrome, if we are just going by the straight diagnostic criteria in the medical community. That's because she does not have craniosynostosis. So, yay! However, she did say that our continued work with the geneticist would probably still be warranted, as there may be evidence of the disease genetically, but she's not presenting with the typical presentation physically. I'm OK with continuing down that road, as there is definitely something going on in BH's family line with regards to this craniofacial issue. However, she does believe L has something called midfac.ial hypoplasia, and after reading about it and studying L's face more clearly, I agree with her. She thinks that she's displaying a mild form of the disorder, which is encouraging, and time will tell if we're looking at the potential for craniofacial surgery as she grows, or just a really good orthodontist. So, very relieved to hear that she is not incredibly concerned with L at this point.

The other great thing to come from this appointment is she is the gatekeeper for the craniofacial team at the hospital, which is made up of multiple specialties dealing with kids with craniofacial issues. A great number of the kids are dealing with cleft palate issues, but they work with any child who has a classifiable craniofacial issue. So, midfac.ial hypoplasia gets us in the door. We have an appointment on Wednesday with the team, which meets once a month by referred appointment only, and we're hoping to get some further answers for what we can expect as L grows. I'm not looking forward to being there at 7:30 am, especially since traffic can make our drive anywhere from 30-90 minutes long, and I'm also dreading keeping her entertained for the roughly five hours they said we can expect to be there. However, I think it will be worth our trouble. The day is designed so that you can kind of do a round-robin and meet with any of the doctors that are needed for your child's issue. So for us specifically, we'll meet with the pediatric dentist, who can better examine her underbite and jaw structure, the ENT, who can investigate if there is a problem with the structure of her ear canal and Eustachian tubes (BH had this as a child), with the audiologist, for a repeat hearing screen, with the speech therapist, who I'm guessing will recommend specific speech therapy, rather than the developmental therapy she's getting from EI, and with the developmental pediatrician, which brings me back around to the purpose of this post. Because I've been pretty good at documenting milestones as they occur, particularly over the first year of the girls' lives, I can use my blog to go back and create a timeline of when all of those important milestones happened (sitting up, crawling, walking, etc.). I'm so thankful to have this information to fall back on, so while it may have been totally uninteresting to anyone other than myself, I am breathing a huge sigh of relief that I will have accurate information to relay on Wednesday. I'll keep you updated on what we learn from this latest round of appointments.

The other event that happened is one that I can laugh about, mainly because I should have been prepared before I even attempted this event. Do you remember last year when I was so excited to get the girls first birthday pictures taken, as well as a Christmas picture of the three kiddos. No? Well, here's a reminder. So, yes, I stupidly attempted this insanity again for their second birthday. This time back at JC Penney. Ha, what a train wreck! Only this time, I kept my attitude in check, while silently rolling my eyes at the fact that we got the brand new photographer (she was being trained on the camera during our shoot!), who had what appears to be zero experience shooting children. We attempted for 15 minutes to get the pictures, and the end result was I had 8 poses to choose from on the computer. Eight. Not eight per child, not eight of the girls and eight of the Christmas shot. Eight. In 15 minutes with a digital camera. Que confusion and head-scratching on my part. Thankfully, I had a coupon that gave me free sitting fees, a free 8X10 and $3.99 sheets, so I picked the lesser of all evils from the eight pictures (no way in hell I was going to reschedule another sitting!), which thankfully was of all three of them, and ordered them in wallets for Christmas cards. I then thanked the crew very politely and left. I'm happy to report I only spent $20 for the debacle, and truthfully I should have spent $0, but I realized everyone needs a break. Given how bad our session was, and the overall rudeness of most individuals in our town, someone else probably took on the role of hypersensitive mommy and complained later in the day, if not later that week. I'm happy that I had enough control to reign it in this year and not be that woman again. Afterward, I came home and reread last year's post and laughed out loud, thankful that while the stress of the day was a repeat, my reaction was not.

Later that night, I forwarded the emailed images to my mom and sister, both of whom emailed me back with hilarious responses. L had lost her shiz by the time it was her turn for individual pictures, so there are no shots of her individually, but all of the ones of K make her look like a sad little waif. My sister referred to the shots as her Les Miserables poses. My mom said they are so bad they're hysterical, and she's totally right. So what did I do a few days later when I got an email with a cyber week offer of $2 sheets? I ordered 3.5X5's of every single pose, and I'm going to bring them out each year and laugh and remind myself that life is not that serious. I also bought some frames from the dollar store, which is so apropos of their quality, and I'm going to give them out to family for a little holiday humor. We have a perfectly good camera at home that captures all the memories I need, including our annual family shot, which I'm happy to report turned out well this year, so I think I have officially put the kabbash on attempting any more formal pictures, and man does it feel good!

Thursday, November 19, 2015

Playing Catch Up


I've been thinking every day that I should just write and inform the (very limited) readers of my blog on my current life events, as I don't want to be that blogger that disappears for months at a time only to eventually never be heard from again. I've always hated that as a reader. Yet, I find myself less willing to share these days. I start writing posts on my iPad, in the hopes that my ramblings will turn into a full-fledged post, and I never finish them. This post took me four days to complete.* I think part of my reluctance is that I've turned into just another mommy blogger and less of an infertility blogger. (Being defined as an infertility blogger could be argued too, as I started blogging after the brunt of most of my infertility experience.) I don't know how to explain it, but I'm just not feeling this space right now. 


All that being said, I feel like I should at least update you on what has been going on the last 2.5 months, as we have had a lot of change. Apologies for the categorical update, but it is easier on my brain.

* So this post went from fairly long to "holy crap I'm going to need a hot cup of coffee to sludge through this." My apologies, but as you read you'll understand why!

Piglet
We are now in the third month of preschool. It was rocky at first, to say the least. My biggest fears of him not understanding the social function of school turned out to be true. By the end of the second week, his teacher was telling me he wasn't listening to directions and even tried to hit a fellow student. Cue freak out from me, and BH telling me to calm down since this is what we're paying the preschool to teach him. I had a phone call with his teacher that night (a very experienced teacher - she's got to be at least 75 years old) and we agreed on a behavior modification plan for school. Each day he would get a report of a happy face/neutral face/sad face regarding his behavior. Once he gets 5 smiley faces, we take a trip to the dollar store for a reward. I'm happy to report we haven't had anything other than a smiley face in six weeks, and he absolutely LOVES the accountability. So much so that I've created a behavior modification plan for us here at the house, too. When I catch him being good, he gets a tag to hang on the board I put together. Once he gets to 24 tags, which I've made take about 8-10 days, he gets a special prize from my prize box (also in the $2-$4 range). He is a totally different kid! Kind to his sisters, well-behaved for us. I should have done this months ago, but I really think the experience at school has pulled it all together in his little brain and wouldn't have worked until now anyway.

He also went trick-or-treating for the first time. We got together as a small neighborhood group - you'll be happy to know our neighbors do not in fact hate us - and he dressed up as an astronaut. We hit about 20 houses before saying goodnight to the group and heading home for dinner with the girls and my visiting parents. He loved every minute of it! I had kept some safe candy aside before we left, to exchange for all the chocolate he couldn't have, and he couldn't have cared less. The main fun for him was dressing up; however, he does love the Skitt.les he gets to enjoy after dinner each night. He's also made a very good friend at preschool. We went to said friend's birthday party in October, and since then, we've had two play dates with him. His mom is super sweet, happens to be a teacher at the preschool, and has her own infertility battle wounds, so maybe that's why we all get along great? Anyway, his current success at preschool has been the highlight of our Fall.

L&K
The girls turned two on October 30. I cannot believe how fast the last year flew by! The fun of these two is that they truly are the ultimate yin-yang relationship. They are absolute complementary opposites. L is reserved, somewhat hard to coax out of her shell, and K lives her life on the edge as the ever-present life of the party. L still doesn't have too much to say (though we're working on it) and K could talk for hours on end, in multiple-word sentences, without taking a break. L is a finicky eater, K devours anything on her plate. L is a little bit heavier, which has been that way since day one, and K is a waif. L will spend large chunks of time flipping through her books, even as a comforting measure at various times, and K takes about 30 seconds to speed-read her material before deciding there is more fun to be had elsewhere. K has become the leader of the two, despite the fact that she was Baby B ;), and I think L loves having her take the lead. They are so fascinating to watch, and bring so much joy to our lives.

In more specific details, L has absolutely blossomed with her EI therapist. And I cannot say enough about how much I love her therapist. I've even been caught calling her MY therapist, because she makes me feel so much more confident in my parenting abilities after she leaves each week. We did an impromptu review of her goals this week (we probably won't have a formal review with her service coordinator until January) and she's now caught up developmentally in gross and fine motor skills. Speech/communication-wise, she's gone from a 9-month level to that of a 15-month old. And while she still has mountains to go, that jump has been truly remarkable in our household. She has about 15 words she uses regularly, and instead of just screaming when she gets mad at her siblings, she is actively engaging in play with them. She and K will chase each other around the house, giggling as they go, and she'll wrestle with Piglet without losing her s*it. She's reaching her hands out to be picked up, to make choices in what she wants for a snack, and to get into the car. She's also more cuddly and will happily sit on my or BH's lap to be read to at night. The best thing about her therapy is that we've figured out her personality. She is definitely head-strong, choosing to do things in her own time and manner, but she is also very introverted. When she gets overwhelmed, which happens at least once every day, she retreats to her books for a few minutes to stabilize her emotions. And we now know that's her M.O., and it's become something that we allow for her comfort. It's so much better than seeing her get frustrated without knowing why!

Medically-speaking, we had an appointment with the new neurologist in September. He took one look at her, reviewed the results of the MRI, and point-blank asked me what we were doing there, as clearly there is nothing wrong with her brain. Thankfully, he thought she should be seeing a different subset of doctors, so we have met with a geneticist and will be meeting with a craniofacial surgeon next week. I went to the geneticist appointment armed with a bag full of material - pictures of BH's relatives diagnosed with the syndrome (some pictures were from 50 years ago), baby pictures of L, a genogram (yes, I'm anal retentive) - and I was pleased with the outcome. They are refraining from testing her as of now, since she is still very young and any work that would need to be done would likely happen several years down the road, and also because they wanted to find out more about my husband's cousin's treatment. As it turns out, his cousin was not tested for the genetic strand for Crou.zon Syndrome, so there isn't a whole lot we can garner from her treatment. The geneticist was willing to test for whatever strand was found with his cousin, but since there wasn't any testing, he's decided to take a "wait and observe" approach for L, which I think is logical. I also take comfort in knowing that they don't feel it's so dire that we need to get her diagnosed ASAP. We will meet with the plastic surgeon next week to get her take, and if she feels it's warranted, we'll hopefully meet with the "craniofacial team" in the near future (surgeon, geneticist, ENT, neurosurgeon, and developmental pediatrician).

I've been frustrated with my husband's aunt's attitude about the whole thing, even crying for several hours after she responded to my simple Facebook message inquiry regarding whether genetic testing was done on his cousin. Her response to me was that she was also told to wait until her daughter stopped growing (although we're talking apples and oranges here since they didn't even realize there was a problem until BH's cousin was 14!) and if she were me, she wouldn't wait to see what happens if L doesn't start taking, as there is "way too much scary stuff if you google unexplained developmental disability and the syndrome." My internal response was one of defense and basically: f@ck you, too! I obviously didn't tell her that, but I've since cut her off any future communication regarding the topic, or her ability to see pictures of L on my Facebook page. I have googled it, thank you very much, and I see nothing horrible or any causation between a speech delay and Crou.zon's. This whole drama was started by her nearly a year ago, when she sat at the Christmas dinner table, staring down my daughter and telling me to get her tested. And while I could be living in denial, the fact of the matter is, more than one medical professional, including the neurosurgeon we saw in April, said she looks developmentally normal, but she just has a very big head, which is also a trend in my husband's family. I told BH at the dinner table this week that I think it's highly plausible she just has his big eyes and my small mouth, which obviously could present as symptoms of the syndrome without her being affected. At the crux though, I just want his family OFF MY BACK about the whole damn thing.

In other twin news, K is an absolute sponge with everything around her. She is officially Piglet's shadow and his chief cheerleader. If he asks for a glass of water, two seconds later she says to me, "I want water." Everything he says she parrots immediately. They have so much fun getting into trouble together, and L just kind of grins on the sidelines waiting to see my reaction. She still continues to be my easiest of the three - she falls asleep within about 5 minutes at nap time and bedtime, eats without complaint, easily leaves one task to pick up another - and gives me a little breather during my day. She drives me nuts in the car, however, as she always takes off her shoes and socks, no matter how far we have to go. It's really annoying on the days we are just barely on time for preschool drop-off. She is also incredibly observant and can be very stubborn herself, but for the most part, she is good-natured and amiable. She's the one that is generally smiling and willing to try new things.

* So I wish I could have left K's update like this, but the past 48 hours have been an absolute nightmare. She started vomiting on Monday around dinner time, and by dinner on Tuesday, not only was she still getting sick, but for several hours she had started a pattern where she would cry out in pain and go rigid and hold her back for about 30 seconds. It was happening about every 20-30 minutes, and I had become very concerned. When I put her to bed Tuesday night, she was up within a half hour screaming in pain. K has a very high pain threshold, so this was definitely not a stomach bug.

I called our insurance's nurse advice line, and they recommended we go to the ER, as I had thought it was possibly a UTI. We got there about 11:00pm. They catheterized her and tested her urine, but it came back negative. They then did an X-ray of her abdomen, and the doctor's diagnosis was that she was constipated. It made no sense to me, as she had had a normal poop four hours earlier, but they sent us home with Miralax and Zofran and told us to follow up with our primary doctor. All day yesterday leading up to her appointment with her primary doc, her crying out in pain increased in frequency and lasted longer. Plus, she was unable to even keep water down at this point. Her doctor agreed with me that this was not constipation, and she sent us to the other ER in our healthcare system, the bigger one, but also the one that is over an hour away.

We got there about 6:00pm, after crawling through rainy rush hour traffic, and the ER doctor we encountered was a real self-absorbed nutcase. She started off with, "So you're mainly here because your doctor is an NP and she didn't have any other clue what to do?" Wow, what a way to win me over! She basically discredited everything I told her about K's symptoms, and when I inquired about an ultrasound of her abdomen, she chastised me and said "You don't just ultrasound an entire area, you have to look for something specific," and said there was no evidence to her it was needed. The next thing she said was the point where she lost my faith altogether. She asked, "Do you think it's possible this is just a behavioral problem?" Wow. Just wow. That's when the mama bear claws came out and I told her my daughter waking from a dead sleep screaming in pain is not a behavior problem. She told me, "Don't get upset, it's just I've never seen these symptoms in my over 35-year career, but I'll call pediatrics and see if they can find any reason for this bizarre presentation." Seriously, one of the best things about our healthcare plan, and believe me there are plenty of negatives, is that they are always asking for feedback. They're definitely getting feedback on this asshat!

Thankfully, the two on-call pediatricians we met with witnessed two of the episodes where she would cry out in pain, stretch out and pull up her legs cyclically, and would then find relief after about 30 seconds of this intense pain. When I was finally nearly in tears begging them, "Something is wrong!," the young female pediatrician softened her eyes and said, "Let's get an ultrasound." Finally, someone (other than our wonderful primary doc) was listening to me! She had the ultrasound within the hour and they confirmed she had intussuscep.tion, where the intestines basically begin to fold into one another or "telescope". The reason she was having these bouts of intense pain is that her small intestine had become lodged into her colon, and it would spasm causing horrible pain. It also caused a blockage preventing anything from passing through the bowels, hence the worsening of vomiting. But in the eyes of the ER doctor, the simpler reaction was to accuse me of just being an overzealous mom, right? She never apologized to me; instead, she said K's symptoms were atypical, that's why she didn't catch it. Yeah, f#ck off.

Thankfully, the treatment was relatively easy. They started her on antibiotics and fluid, then under the guide of X-ray, a team of radiologists inserted a tube through her rectum and into the bowels. They then pumped air through the tube to cause the intestine to dislodge. I was able to be in the room holding her head, and she was so brave and strong. There was also a pediatric surgeon observing, because if it wasn't successful, surgery was the only other option. Afterward, which was about 12:30am at this point, she passed some gas and fell asleep. She has been so exhausted because of the pain she was in, and after we were finally in her room and the night nurses had let us be, which was about 2:30am, the only thing I could do was cry. If I had let that doctor bully me, we would have been sent home and she would have continued to suffer in agonizing pain! Left untreated, this condition rapidly goes downhill, including sepsis and potentially death. They checked on her already this morning and she is able to start a liquid diet. We're hoping to progress to solid food by dinner time, then we should be able to be released tomorrow. There is a small chance that it could reoccur, but if it's going to happen, it's likely to do so in the first 24 hours after the procedure, which is another reason for the hospital admittance. I feel like I've climbed a mountain, and the adrenaline is finally starting to wear off.

Me
So I'm now officially 40. The day itself was pretty anticlimactic. BH and I went out to dinner, as my mom came into town for the weekend, and we tried out a restaurant some friends recommended. Since then, I'm finding myself a lot more reflective these days. In my self-worth, as a wife, as a friend, as a mother. I'm following a desire to pour myself into books on personal growth. I've created a list where I'm trying to read "40 for 40". I'm on book three, so I need to pick up the pace, but I'm finding that having an hour to my thoughts each day is energizing and cleansing. I'm hoping to add in some physical movement soon, either the eliptical, the treadmill or some yoga, but I've sadly not yet worked that into my schedule. I'm still below my pre-pregnancy weight from before I conceived the girls, but I would no longer consider myself fit by any means. I continue to make bad choices in my diet, and I very much need to improve upon that. The only reason I haven't gained is because i tend to just grab little bites throughout the day until I eat a normal-sized dinner. It's definitely not healthy. So I guess I have officially hit midlife and am navigating my own version of the midlife crisis. Having already lost a few friends/acquaintances in my thirties, and also having two high school classmates whose spouses are currently facing terminal illnesses, I think I'll take the hard work of getting my sh!t together now, as I have so much to look forward to in the coming decades.