Sunday, July 10, 2016

5 Months!

I am sure I have said this with all three kids, but where is the time going?
eating,

We are starting to see your personality, and it's awesome. You love to sit at the table while James and Catherine are eating and laugh and laugh and laugh with them. They love making you laugh! And you have finally started to really laugh. It seems like that is our entire goal when sitting around the dinner table at night.

I began the mission a few weeks ago to get you out of our room. Honestly, I do not know how people who co-sleep do it. I want my bed, and I don't want anyone but my husband in it (more on that in a bit). At first, we were going to transition Catherine out of her crib and into the lower bunk in James' room. That backfired like you wouldn't believe. Then we took Catherine's crib into James' room and shoved it into a corner. It backfired, but in the complete opposite way from the night before. Instead of refusing to go to sleep and screwing around with the James the whole night, like on night number 1, you screamed, and screamed and screamed. The third night, we aborted mission. I'm sure the nay-sayers out there would say we didn't do it long enough, but Eric and I know our family dynamic, and that arrangement wasn't going to work, no matter how much we tried. Catherine is a creature of habit, and taking her out of her habitat was a big mistake.

Don't get me wrong, you sleeping in our room, in a pack-and-play (because, you know, I sold all my baby stuff, including an extra crib we had), was not a huge deal. In fact, in our 14x10 foot room, we have a dresser, a nightstand, a king-size bed, and your pack-n-play, and although it felt like there was something on every wall, it was not horrible. It jutted out from the wall more than our walk-in-closet built-in's, so the nightly trips to the bathroom were a little difficult in the dark, but otherwise, it was not bad. But it was high time for you to start having your own space.

Once everything backfired with Catherine and we stuck her back into her own space, all was well with the world. So we took your pack-and-play, and stuck it in a corner in James' room. So far, it has worked out well. I let you fall asleep in our bed, and then after James falls asleep, I move you to the pack-n-play. Only tonight, James is refusing to go to sleep. So I put you in there anyway, and surprisingly, James is reading books quietly while you snooze away. Thankfully! Unfortunately, because of James' room lay-out and his bunk beds, we can't fit your dresser in there. So, your dresser is in Catherine's room. Which is not a huge deal, as Catherine's dresser, which holds the changing pad, is right next to yours. Works out pretty well. I remember when I was freaking out about how we were going to arrange you kids, and now it seems like it's working out better than I imagined. And, in the end, it's not permanent. Thank God.

Speaking of sleep, it seems to be missing. Between 2-4 months, you were pretty solid in only waking up once a night to nurse, which was awesome. Once you hit four months, that quickly melted into the past and all of a sudden you were up twice a night. Not a huge deal, as I am on summer break. However, summer break is also different from maternity leave in that I now also have two other kids to watch as well. Which can be difficult when I have to nurse you and put you in your bed for naps. It was a little daunting at first, but at least I can honestly say there hasn't been a time where it doesn't work for us...

So about mid-June, you started waking ALL THE TIME. For example, last night, you ate at 7, 9, 11, 2:30, 4 and 5. Then didn't eat again until about 9 a.m. It was tough. In fact, it's been tough for about a month. Today, I was so tired when the rest of the fam-bam got up at 6:30 that I told Eric he was in charge and passed out in James' bottom bunk for two hours. I tried to take a nap, but again, that was impossible with two other little ones. I used to never nap. Now, I could fall asleep just about any time, any where. Case in point, the other night when I was nursing you, I fell asleep for about an hour and a half, from 6:30-8. Eric woke me up at 8 to ask me something. I moved you to your pack-n-play, cleaned up for the night, and came back to bed at 9. I was looking forward to a great night's sleep, but no, you had other plans.

Most times, if you are up a second or third time, I drag you into bed with me. NOW, I understand co-sleeping. I know it's dangerous, I know you could roll out of bed, or someone could roll on top of you, but holy hell, it's about the only thing that saves me. Luckily, you go right back to sleep once you're done eating. And again, nay-sayers would say you that you don't really need to eat. You just need to be rocked back to sleep. WRONG. I tried that. I tried letting you cry a bit. I tried the pacifier. No-go. You want to eat, and boy do you eat. No wonder we're into 6-9 month clothes already. You're a hefty one!

It also seems in the past month or so that you need to be nursed to sleep, which, of course, ratcheted my anxiety to sky-high levels. I was starting to read all about sleep training methods, which I have never had to use before, when the past week or so, you have started to fall asleep on your own. Most times, I do still nurse you, but you are still awake when I put you down. Or when I move you to James' room, you wake up, but are able to settle back down. I know this seems false, because of what I have written in the previous paragraph, but I do believe I have been blessed with amazing sleepers. James usually sleeps about 12 hours, Catherine sleeps 13-14 hours with a solid 2 hour nap, and you set your own, incredibly easy schedule. 9-10:30/11:00, 1:00-3:00/4:00 and occasionally a cat-nap at 6:00. If so, you go to bed about 8:00 and if not, you go to bed about 7:00. James was the same way, and when Catherine wasn't screaming, she was the same way. Now, if I could just get you to sleep through the night.... I am guessing it will come, with time. Instead of sleep training, I am just going to be patient. Like I said, when you wake up to eat, you EAT. Sometimes just one breast (I have the classic overactive let-down, so usually you can get enough to eat off one boob at a time), but sometimes both. You do the same during the day.

You are rolling back to front with ease, and have started to figure out that if you move your arms and legs at the same time, you might actually get somewhere. It's been fun to watch you try and move around the room. Rolling from front to back is possible, but seems more difficult for you to figure out, and once you do, it's not graceful at all and you don't like it. I think army crawling is in the near future. Hopefully not before we go on vacation in August! We rented a three-floor house, and hope that we don't regret not asking about baby gates.

Otherwise, you're an incredibly chill baby. You cry if you're hungry, tired, or have to poop. You are incredibly easy to read because you have set your own schedule and I just follow your cues. I thank God we were blessed with another "easy" baby, but constipation issues seem to continue to plague us. I had some bananas laying around and thought I would start you on some solid food, only to remember that bananas can lead to constipation. I give you probiotic drops every day, and that seems to help, but again, I can tell you are constipated. Nay-sayers would tell me, and HAVE told me, that breastfed babies don't get constipated. Umm, sorry, but mine do. So other than trying to help the poop along with some probiotic drops and the occasional Miralax, you are an easy baby. Thank you, Drew-boo, for that.

Your eyes are turning a beautiful deep blue. Sometimes, I look at my beauties and all their features, and tonight, I was looking at James and Catherine's eyes. James has deep blue eyes that almost look brown with his brown hair. Catherine has light blue eyes that remind me a lot of my mom's eyes. Both beautiful, but very different. You, my son, are most likely going to have the deep blue eyes of James and me. Eric also has lighter blue eyes, but still very pretty. I also have to say, you are just fricken adorable, and I love taking all my kiddos somewhere. SOMEONE always comments on one of your features. It's amazing how we created all three of you, but you're all so different.

I love you so much, boo-boo, and I can't wait to see what the next month brings!





















 



















Sunday, June 19, 2016

The Battle of the Bulge, Part III: Week...18?

The neighbor girl asked me today how old Drew is. I said, "...4 and a half months?" She replied, "Yeah, but how old is he? Like... how old?" So I replied, "...18 weeks?" She said. "Wow, that's really old!" I love the minds of little kids... unless they are whining or arguing. In that case, no thanks, but in this one, adorable!

So I have been on this journey for 18 weeks (or so, I am not really counting at all and frequently have to think when asked how old Drew is, or how old any of my kids are, or really what day of the week it is and yes, think I showered...

But I digress.

Yes, 18 weeks since Drew blessed our lives. However, the beginning was all about survival. Eating whatever I wanted to help with milk supply. Yoga pants and nursing tanks with the occasional bulky sweatshirt thrown over it. It was glorious.

But I will never forget stepping on that scale when I decided to get serious. I haven't really disclosed what I weigh at each of my blog check-ins, but writing my first one, I was incredibly depressed. How did my weight gain get that out of control?

Maybe it was all the extra portions, less mobility and not really giving a shit. I have lost it before, I can do it again. Hahahahahahahah, little did I know it would be this hard.

I weighed around 190 at about 8 weeks post-partum. Today I stepped on the scale and I weigh 169 post-partum. And that's not a magical, OH MY GOD I GOT PAST 170 and then tomorrow it will be back up to 171. It has been legit for a couple of days, but I didn't want to blog about it because I thought it was a fluke.

So what have I been doing? Eating healthy, playing more with my kids now that I can, y'know, MOVE  and watching my portions. Oh, and breastfeeding, which can burn up to 800 calories a day. Crazy!

It's been a long road, but a road forward nonetheless.

So about 20 pounds lost in 2 1/2 months sounds a lot better 20 pounds lost in 10 weeks, but I will take it. That's about 2 pounds a week. Which is quite impressive. I have 2 more months of summer, which is another 8 weeks. Maybe I can burn off some more by the time I go back to school?

We shall see!
On the left: About 185, and definitely sucking in. On yhe right: 169 and still going... hopefully!

Sunday, June 12, 2016

Fighting for Catherine

Throughout this entire journey, I have been telling myself that God put me on this earth to be your mother. I will be the best damn mother I can be for you.

I haven't always been. There are things I have said in the middle of your screaming jags that I wish I could take back and thankful you are too little to remember. I have had to breathe through more than one of your temper tantrums, just to keep my cool. I have to remember that you are a little girl, literally crying out for someone to listen to you.

We figured out the banana and milk allergy, which I am excited about. However, we still have chronically runny noses. We still give you allergy medicine every day, and we haven't had an ear infection since we took milk out of your diet, but in the back of my mind, a little voice has been telling me that this is just the tip of the iceberg.

The rest of it is yet to be discovered, and I decided after some research this weekend that I will, once again, be engaging in a fight to give you a voice.

I'll start back at Friday, when we had our speech evaluation by Childserve. Now, mind you, we have already had a speech evaluation by the Area Education Agency, and you are qualified and receiving services through the birth-3 year Early Childhood program. But I wanted to get a second opinion. I like our SP, Heather, through the AEA, but she hasn't ever worked directly with you. She has observed you once, and from there, she gets together with me, answers my questions, and gives me ideas on how to work with you at home. That's fine, but not really what I was envisioning in regard to therapy for you. Heather is about to get an earful when we meet on Tuesday, but that will come later in this post.

So I sought out the second opinion of a speech evaluation through Childserve. No surprise, you qualify. The speech pathologist we met with was YOUNG, and although she did a fairly good job, she didn't seem to engage you in a way that lead to really any productive outcome. Not that I'm qualified, or really do I know what kind of speech therapy you truly need, but while she was trying to engage you with pictures, I was hesitant. Pictures are not what you need, or really what you want. But I watched, and in fact, even judged, and left pretty disheartened. The only straight answer I got from the speech pathologist was that your receptive language is that of a 15-16 month old (I would put you personally had a much higher age, but again, I didn't think she saw what we saw every day), and your expressive language is that of a 6 month old.

That last part is what had me crying in the parking lot.

But now that I have had my pity-party, it's true. Your speech is much like Drew's. You moan a lot, make grunting noises, say "Ma" for mom and "Da" for dad, and make a weird "ck" sound in the back of your throat for any animal with four legs or anything that resembles a bird.

That, combined with the fact that I have never heard you say an "oo" vowel or an "oh" vowel, are my red flags. So, true to form, I googled the shit out of that phrase. "Toddler without "oo" or "oh" vowels."

That was when my world erupted and things began to fall into place. Before the .5 people who actually read this blog think that I'm off my rocker, I want to say that right now, I'm 2 for 2. I suspected James had an egg allergy thanks to his eczema, and guess what? I was right. I suspected Catherine had some sort of allergy, and guess what? I was right.

And my mom-gut says there is something much more going on with Catherine than I thought.

Catherine's MRI came back "normal." She has a short spinal column, which was noted, but still within the range of normal. She had pansinusitis (inflammation of all sinus cavities) and fluid in both ears, but that fluid was within the range of normal. All other allergy tests came back normal, sans banana and milk. We have tested her for several things, and still, no results have come back waving gigantic red flags.

But yet, my mom-gut says there is something there.

So I googled the aforementioned phrase, and what should appear? Childhood Apraxia of Speech. Reading the symptoms was taxing: it's a complex disorder, and has not been well studied due to the fact that it's an actual neurological defect, but it affects speech. So who diagnoses it? The neurologist or a speech pathologist? Reading the actual stories of people who have blogged about it was taxing. So instead of getting frustrated by all the information pouring out at me, I wrote down every single symptom that any parent, researcher, doctor, or support group had mentioned.

So here is the list and why I am all of a sudden feeling so strongly about this:

Generic Syllable to Describe Several Things
Her daycare provider has been saying for more than a couple months now that Catherine has a word for everything, but it's not the right word. Sometimes, it's not even close to the actual word. And I have noticed it too. The other day, she saw a dog and said, "Daw!" I couldn't believe it! That's not even a word we had been working on! But she said it!!!! I was elated. Wahoo! A fourth word! Only to, not even ten seconds later point out and say, "Daw!" But there was no dog. It was an ambiguous white house with some ambiguous flowers and a tree. Not only was there no dog in sight, but there wasn't even a dog barking somewhere else in the neighborhood. I was a bit defeated, but chalked it up to maybe she was still talking about the "daw" we had seen a few houses down. The same for "cat." She doesn't say the word, but she will say "ckckckckc" in the back of her throat. It almost sounds like if you or I were to actually elongate the "c" consonant for someone with a speech difficulty. She points at our cat, and will said "ckckckc." But she will also point to a duck and say the same thing. Which is interesting, because she was saying, "quack quack" when she would play with her ducks in the bathtub, which I will mention in a few...

Relies Heavily on Excessive Gesturing to Communicate
Catherine is a talker, but with her face, hands and body language. You know when that girl is angry with you, when she is delighted by you, and of course, when she needs something. She has things like the "hand-wave" where she flaps her hand back and forth when she wants you to follow her. Now she has the "hand-wave" combined with the patting of wherever she would like me to set Drew down so that I can follow her. She points, of course, and she pretends to climb up on everything she would like to actually sit on, like her chair, the counter top and the table. She will pat a chair heavily if she wants us to sit in it, or she will pull our arm if she wants us to get up so that she can sit in it. She will get her shoes if she wants to go outside, but it used to be that she would get her coat if she wanted to go somewhere. She will nod if we guess what she wants, and she will shake her head no emphatically if we guess wrong. No matter what, she is gesturing to us in order to communicate to us. Combined with her sign language, I would say that's a useful thing, but when combined with all the other symptoms of CAS, it's really not.

Sounds/Syllables Omitted (ie. dropping the end consonant of a word)
I realize that Catherine only has three words: Mom, Dad and yeah, but she doesn't say "Mom" she says "ma." She doesn't say "Dad" she says "dah" with an "a" that sounds like apple. Which is interesting, because she can't say "cat" even though she has the "ck" consonant and the "a" like apple vowel. Again, not really compelling on it's own, but when combined with all these other symptoms, it makes sense, which I will mention more of in a bit...

Cognitive Skills Within the Normal or Close to Normal Range
Thaaaaat's Catherine! All of her cognitive scores were in the normal range, which helped us rule out Autism. "She could just be a late talker" would be the automatic response to this one, but again, combined with some of these other symptoms, it's pretty compelling evidence that there is something else going on.

Receptive Language Much Higher Than Expressive Language
The SP from Childserve on Friday, and Heather from the AEA both said that her receptive language is much higher than her expressive language, and it is. Catherine can pick up a pink towel and wipe Drew's face while Drew is sitting in the Bumbo without blinking an eye. She can find the pacifier and put it in his mouth when I ask. She can pick up said pacifier after she has touched it because she has (had) Hand Foot and Mouth Disease and put it in the sink when I ask. Two-step, and some three-step directions, are not beyond her. She can pick up her shoes and put them in the closet. She can find her shoes in the closet and put them on her feet (not all the way, but she gets the concept, for sure!). This girl is not stupid and considering the life she has had, it might be surprising.

Behavioral Problems Directly Correlate with the Inability to Communicate
Oooohhhhh, the temper tantrums you can throw, my lovely. Sometimes they are completely out of the blue. Sometimes, they are warranted, but either way, you throw them like a Diva. Complete with apparent double-jointed legs (which I will mention later) and crocodile tears. They are something for the Oscars, and I have no doubt that you are just as frustrated as we are that you are unable to communicate with us what your needs might be. For example, for almost 10 minutes in the car yesterday, you screamed bloody murder. You were flailing in your car seat, tears streaming down your face and I was monitoring my breathing so as to not lose my shit in front of James, who was trying to calm you down. I tried over and over to guess what it was that you were having a temper tantrum about, until I finally, in desperation, pulled off your shoe. Why the hell did you want your shoes off? Well, James had taken his off in the car about 10 minutes earlier. And guess what? You just wanted to be like him.

Hypotonia of the Truncal/Leg Region with Laxity in the Ligaments of the Hips
If you remember back to a year ago when we had our follow-up appointment with our gastroenterologist, he was the one who mentioned to us that you had hypotonia of the legs and would best benefit from physical therapy. We thought it was because you wouldn't move due to your constipation, but in hindsight, I don't think that was it. I have had more than one witness to your temper tantrums, and several people, even a total stranger once, have asked me if you are double-jointed in your hips/legs. Even I envy the way you would curl your feet up and look at the blisters left by Hand Foot and Mouth Disease this past week. It is pretty incredible. There are times where I have seen you hit yourself in the forehead with your foot during a temper tantrum! When I brought up the fact that your stomach sticks out when you walk/run, the physical therapist stated that it was most likely because your trunk region just wasn't strong enough yet, and that's how you maintained your balance. This was corroborated by our pediatrician at your 18 month appointment, and I remember, somewhere on this blog of mine, writing about it. I thought it was weird, and even when the MRI came back about your spine, I thought maybe that was it, but in the back of my mind, I now believe it has always been this. Beyond all this, you still sleep with your head on your feet, and you have for awhile. You will lay down on the floor like that. Lastly, you almost always sit with crossed legs, "Indian style." You even do it in your car seat. All of these little things I have thought were weird I just chalked up, again, to the fact that you are "developmentally behind" and that things will change. Only they haven't. I also noticed that after you go up the stairs, you want to be picked up, and frequently, after walking a little way, you want to be picked up. I suspect it's because you're tired. I don't blame you little girl. We have had a rough 2 years.

Difficulty Running Smoothly and Throwing a Ball
These symptoms derive from neurological "soft signs" in that CAS is a neurological disorder, so it naturally affects things besides speech. I would suspect that the hyptonia in the legs and trunk lead to the difficulty in running smoothly. And you, little girl, run like a bowling ball on legs. I took a lot of time to observe you running today and noticed that it takes you awhile to get going. You also don't necessarily run, but you lope. If you think of the "gangsta walk" where you put emphasis on one leg, and kind of hop on the other, that would be you with running. In walking, you sway your hips forward to back, A LOT. Again, I thought it was always weird, and some people would say "She just started walking 5 months ago." But again, even my daycare provider has mentioned that maybe all this has to do with her legs, or something because she has this slight lope when she walks, and it's exacerbated when she runs. Exacerbated by about 10,000. Sometimes, she will swing one hand with a straight arm, and I wonder if it's for momentum? You also are terrible at throwing a ball. You cannot throw overhand, you haven't expressed any hand dominance as of yet, and you do this weird wind-up where you wrench your arm back like a softball pitcher and then move your arm outward from your body and across your body, letting go of the ball somewhere in there. Usually, not where it needs to go. It's pretty interesting to watch, but once again, I chalked it up to you just being developementally behind.

Sensory Seeking:
CAS is actually closely related to autism in that they both have to do with neurological processing in the brain. Interestingly more, it does not resemble autism in the slightest, except for possible sensory overloads. Once again, your daycare provider and I have talked on more than one occasion about you covering your ears when things are even the slightest too loud, and hitting. At one period in time, you were in time-out several times a day, for several weeks, because you would randomly go up to people in daycare and hit them. This can be a symptom of sensory seeking: you want to see what the reaction to others will be because you don't understand what your reaction would be if it would happen to you. You used to hit Drew a lot, and you are still pretty rough with him, but it has gotten better thanks to a healthy dose of time-out.

Lost Sounds or Words
This is a big one. A huge one. In fact, as I was reading and going through these blogs one by one until 1 a.m. last night, this was the one that struck me the most, and it is the biggest red flag of CAS. We have heard anywhere from chair to snack to fucking dinosaur. I will never forget the time we were all getting ready one weekday morning, and there was some popcorn dad had left in a bowl by the foot of the bed. Naturally, you picked it up and in our desperation to try and get you to say ANYTHING, I asked you what it was. You turned to us while holding a kernel and said, "Popco." What the fuck???? This was even before you were saying Mom and Dad consistently. I remember that day was one of the better days we have had. I was elated. Fucking popcorn for God's sake! And then we never heard it again. Same with chair. Same with snack. Same with dinosaur. Same with quacking like a duck. And then, beyond that, we have lost your ability to open your mouth and stick out your tongue. You were doing that a month or so ago, and it was hilarious. You loved to make us laugh with it. Now when we ask you to do it, or do it ourselves to model it, you stare at us. And when I did it today to see if it had magically come back. I could see in your little face you were actually trying to figure out how to do that again. You just learned how to put your tongue between your lips and blow raspberries. I would bet my wedding ring that will go away as well.

Cannot Lick Food From Lips or Blow Out Candles
Obviously, this is for the older ones, but I have a picture of James at 15 months licking spaghetti sauce from his lips. Whenever Catherine has something on her lips, she wipes it with her finger and sticks her finger in her mouth. I have always thought it was odd, and I noticed it because I get annoyed that she will then take that finger that still has food on it since she didn't lick it off all the way and touch something on the table with it. Minor, but when I read this one, it became major. It was like a lightbulb went off. She can suck through a straw, but she doesn't pucker her lips to do it. She doesn't pucker her lips to give kisses either, they are still open-mouthed like a 9-month old would give kisses. And she didn't blow out her candles on her birthday cake, no matter how hard we tried to get her to. Again, all these things are so little and minor, but putting them together with all the others has been eye-opening.

Difficulty Combining the Consonants and Vowels They Do Have
Holy. Shit. This one struck a chord with me as well. She can say "da" for Dad but can't say "Cat?" Even though she has the consonants and vowels from other words. This is a classic sign of CAS. Because of myelin delays (which I could bore you to death with thanks to my education as a teacher and fascination with this very subject), kids with CAS frequently have inconsistent errors, and usually only when imitative speech becomes automatic can the errors subside. But they can still be there. It's spontaneous speech, which we take for granted, that is most difficult for them. That's where the errors come in. Catherine said "da" for just about everything, but when asked who Eric was, she would not say "da." In fact, she still doesn't. But that's how she addresses him. I have made comments to friends that I think she knows the words Mom and Dad, but I don't think she knows that is who we are. Now I realize she probably does, she just can't say it. With at least a year of repetition, we have finally gotten her to say "ma" and "da" but when I put it into perspective this weekend, I realized just that: it has taken us a year to get our daughter to produce two words. So that makes me wonder, how long will I have to wait to hear her tell me she loves me?

Consistently Makes One Sound That is Easy for Them
For Catherine, that's "mm mm mm." No joke, we hear that everywhere from 1 to 3 seconds. The urgency in her tone will change either with the urgency in her command ("follow me") or frustration that we don't understand her. This is why we first began to suspect autism. Either way you look at it, "humming" like that is not within the normal range of little people. It's "different" and I always thought it was strange, but again, chalked it up to the fact that maybe we just have a quirky little girl. She says "mm" when she shakes her head no, and she says "mm" when she is off to grab her shoes. It's all. the. time. She will say it when she is addressing us or playing with Drew. Again, it's all the time. Also, the "da" is all the time. And the "ck" sound is all the time. There are no other words or phrases that we have heard. I have said to multiple people, several times, that I wonder if part of her tongue might be paralyzed (again, it's a thing that I studied in college and I could bore you with it, but I won't), but again, it's been poo-pooed, most likely because it's so rare.

Does Not Talk When Playing with Children
Catherine consistently communicates the same way with everyone. "Mm mm mm." Sometimes "da" but that's mostly for myself, Eric and Christy, our daycare provider. She does not talk. She plays pretend well, but she will not talk. Again, people would say it's because she's not talking yet, but as many parents know, kids are very different when playing with other kids rather than interacting with adults and their parents. You would assume that there would be something there.

Drops Final Consonant from One-Syllable Words
Again, with the "mom" and "dad." Even when she had the "quack quack" for about a month, it was never "quack-quack" it was always "qua qua." When she said "snack" it was "sna" and when she had popcorn, it was "pop-co." I wonder if I have ever heard her said a full word with complete articulation. I don't think so.

Parents/Care Providers Often Suspect Autism
While we were in the trenches of running tests on Catherine, and when I decided I was going to be her best advocate, Eric and I took separate autism tests on the Autism Speaks website. Eric scored her at a 1, I scored her at a 2. Needless to say, not autistic. When she was evaluated by the AEA, it came back that all her cognitive abilities are within the normal range (albeit, the lower normal range, but the normal range nonetheless), so obviously, not autism. But there something going on with my little girl, and with autism being such a wide spectrum, I figured she was on there somewhere. And let me tell you, some of my best, brightest, and incredibly weird students have been on the spectrum. Austistic students actually make great music students, because music accesses a different part of the brain that can be used in communication. Hence why music therapy for autistic students has blown up in recent decades, and why autistic savants are usually gifted in math or music. Again, I could bore you to death, (or not, because it's really fascinating), but essentially, we suspected autism fairly early on. Especially with the loss of the words/actions. Once we heard words and then she lost them, I thought for sure we would get an autism diagnosis, but such was not the case. Again, as I mentioned before, CAS is actually very closely related to autism, but does not resemble autism but for any expressive language delays. Interesting.

Sometimes Has Food Allergies due to Lack of Nutrients or Malabsorption
Again, this one struck me right in the gut. In fact, it struck me, and then sat there as I back peddled my way through her life, and then fast-forward again. The sleepless nights, the breastfeeding, the crying, the cluster feeding. Then she started on solids, and all was well. Not great, but well. I went through my blog posts in her monthly updates from her first year of life, and several things jumped out at me, which I will mention below, but none such as the lack of nutrients or malabsorption. These two things were brought up to me by several people, several times, as an explanation for her constipation. And then when she was recently diagnosed with a milk allergy AND banana allergy, I thought for sure that was it in the beginning. But I truly wonder if it was.

The Conclusion
There were a couple of things that also came up that Catherine does not have, but I wonder if they would appear later on. For example, one of the symptoms was "groping" for words. I watched a few videos on YouTube, and this was pretty apparent, which made the diagnosis pretty easy to identify. Essentially, the word describes the action perfectly - the child gropes for the articulators to work. They will move their jaw back and forth, or purse their lips together when trying for an articulation that uses the back of the throat instead. It was interesting to watch, and something that Catherine most definitely does not have. Other, smaller symptoms had to do with stringing together longer sentences, which again, Catherine cannot do. I wonder, though, if this would be a symptom if she could. I would say time will tell, but I am determined to get her the help she needs before it gets to that point.

Fish Oil
So in my journey through blog after blog and article after article, the diagnosis wasn't that great because there is no cure, typical speech-language treatments don't work, and Catherine will need to undergo intensive therapy, and most likely have an IEP/504 plan when she enters school. She will most likely be taken out of class for speech therapy, and we will have to be diligently working with her at home for her to even make the smallest amount of progress. However, the silver lining is that it is called Childhood Apraxia of Speech. Empasis on the childhood. But after reading and re-reading articles, I tripped across one on page 9 of my google search that described fish oils as a recommended treatment.

Back to the myelin delays that don't show up in MRI's. Also a disclaimer: this might be boring, but to me, it's fascinating. Myelin is the electrical cord that connects all the things that need to go right with speech and sends it to the articulators to make them work in tandem. If you think about it, it takes a lot to actually speak spontaneously. An idea has to form, and you have to articulate that idea using thousands of muscles and breath support/control in order to form a coherent sentence. In kids with CAS, experts who have actually studied it think that there are myelin difficiencies, which is why not only is speech the main thing that's affected, but there are also neurological "soft signs" as well. Fish oil, apparently helps to repair those deficiencies, and after googling the shit out of "fish oil and apraxia" I found that some parents, when using the right dosages, saw almost insant results (within days). That's not to say that there wasn't still a long road ahead, but simply that their child's articulators (the tongue, soft palette, lips etc.) began to work much more than they had before. It's not that Catherine doesn't know how, or that there is a delay there, it's that she actually cannot send the right signals from her brain to her articulators. It's quite fascinating when you think about it in that context. Like I said before, she's not stupid, she's not a brat, she literally cannot do something she wants to do.

So I loaded up the kids (segue: I had it in my head that today was Father's Day, so much so that I actually got Eric a present and took care of all the kids all weekend... so a road trip with the two older ones was in order) and headed to Whole Foods, where I knew they had the fish oil supplements that I needed. I came home and gave Catherine a very small dose, although I wanted to go gung-ho the first time out, but know it could be bad for her. When she woke up from her nap, it was like there was a new understanding. I know this is crazy, but I remember at one point I looked into her eyes and it was like we understood each other. For so long, I thought all of this was because we are so much alike, she will just be closer to her dad, she's a daddy's girl etc. But I think deeper than that, she just wants to be loved, and maybe she felt like I wasn't doing that. I looked into her eyes, and I saw a brightness that was there which I haven't seen before. It was like she knew that I'm fighting for her, and she was so grateful, in that moment. It was an incredibly clarifying moment for me as her mother. Normally when saying something like that, I would make a joke about how it might have been about the popsicle I had given her just before that or something, but in it's entirety, I can't joke about it because it was so real. There aren't really words for what passed between us, but I think she knows I am fighting for her with everything I have. Deep down, she's tired of not being able to communicate either.

What's most interesting about all this is that I'm fascinated by the brain. I am fascinated by how music works with and for the brain. I have an education and background that helps me to easily understand the vocal anatomy. Anyone reading these articles might have been clueless, but thankfully since I know how the vocal cords work, and the structures that surround them, and how to engage the breathing mechanism. I was put on the earth to be Catherine's mother. There was a reason for it, and I think this is it.

Lastly, last night when I was frantically looking through these articles, I found the article which had the symptoms that struck me the most, from a mom in Maryland who was simply blogging about her journey to finding her child's voice. And I glanced at the clock on my phone. 11:11.

Long story short, some people who are greatly superstitious believe that making a wish on 11:11 will help that wish come true. To me, it's my dad's birthday. November 11th. 11/11. And last night, while light bulb after light bulb was going off in my brain, going to war with the skeptical side of my personality saying, "Could this really be it?" I glanced at my clock, and there it was, plain as day: 11:11.

I thought of my dad a lot today, thinking about what he would say if I presented this information to him. And I saw it, clear as day. "Well, then you have to pursue it."

I put in an email to my pediatrician outlining all the symptoms I found and how Catherine meets all of those (much like I did above, only an abridged version), and plan to put in a call to the Speech Pathologist at Childserve tomorrow. I will call my pediatrician tomorrow to make sure she got the note, and I also plan to hit Heather from the AEA with this knowledge on Tuesday, after she asks me about Catherine's progress and I tell her that none has been made on Catherine's end, "but here is the progress I have made."

Catherine doesn't really have a voice yet, so it's my job to be it for now. The information is overwhelming and the methods with which parents have engaged their children at home is wealthy. But I am going to take it one day at a time. We are starting with sight words on the fridge and fish oil. From there, I plan to make up some songs about making faces to get you to try and manipulate your articulators (sticking your tongue out at me, puffing out your cheeks etc.) And we'll go from there.

I love you little girl. I hope someday I will hear that you love me too.

Edited to say that we heard back from our pediatrician this morning at 7:45 a.m. The first sentence of her email was, "Wow! This does sound a lot like Catherine!" And from there stated she would di some research, call the University of Iowa Children's Hospitals in both the neurology department and the developmental departments and get back to us soon. I am elated, relieved and sad all at the same time. But so thankful I am being heard, because for too long, Catherine wasn't.

Monday, June 6, 2016

4 Months!

I should probably start calling you champ, because that's what you were this past weekend. ALL weekend long.

You held up through almost 7 hours of driving (probably helps that you still nap a lot) on Saturday, and your baptism on Sunday.

Your dad and I were just talking the other night about how we were so shocked to find out about you, but yet, you have rolled into our family (emphasis on the pun since you're a porker!) and it seems like you should have always been here.

You are also starting to actually roll from the back to the front. It's not consistent yet - you seem very happy on your back and seem to really enjoy playing on your activity mat. But every once in awhile, you seem to really want to get moving and then FLOP - right onto your front. We haven't seen you roll from your front to your back yet, but it will come. You are going through the developmental stages just like you should, although I was worried for awhile.

You started having some poop issues last month, reminiscent of Catherine's, which totally freaked me out. I thought for sure we were starting down the same path, but low-and-behold, a little probiotic cleared that right up! You are now consistently pooping, and it's hilarious when you do. Usually some farting, some grunting, and then a big grin when you're done.

You have a tooth! Another thing that I am so grateful for - we had no idea you were even teething. I had my suspicions, since you seem to be drooling like a crazy fool, not to mention always chewing on your hands, but I didn't think it would be this soon. I felt in your mouth Saturday and could feel the teeth just below the surface. So I felt again yesterday and tadaa, your first tooth! Could be why I am so sore after nursing lately.

Speaking of nursing, you are a champ. I am excited that this summer there will be LIMITED pumping sessions. I have a love-hate relationship with the pump and am so glad to be done with it for awhile. Although tonight I have an evening obligation, so I will, once again, be pumping once I get home. But for the most part, we are done with it and I couldn't be happier. So we will cruise throughs summer nursing and cuddling all the live long day while your siblings are in daycare for mommy's sanity (except Fridays when I have all three of you).

Otherwise, we are cruising right along. I just said to your dad this morning that it's crazy you are out of the infant stage and now well into the "baby" stage. Tomorrow is your 4 month Well-Child check up. I will be anxious to see how much you weigh and how long you are. I am betting that you are about 16-17 pounds and 25 inches. We will see how good I am after being through this with two other children...

James made you laugh the other day, and it was delightful to hear. I didn't get to see it as we were coming home from daycare, but I heard it and I about cried. You love your siblings, and they are crazy about you. I can't wait for a few years when all three of you can run about and enjoy each other. Those will probably be the best (and worst, most-trying) days of mommyhood for me. James and Catherine are getting there, but Catherine is just a tad too little...

You have graduated from the carrier to the "rocket ship" - a $300 car seat purchase that I made for $150 when I found it on clearance at Target (yay Target!). That will make for some interesting trips to the store, as I will have to carry you since your'e still a little too small to sit in the actual seat on the shopping cart. Looks like I will actually have to figure out how to put you in the wrap! Catherine has then graduated to the 5-point harness booster seat that we had for James, and I found out today when trying to squeeze all of them across the second row bench seat that, by God, James doesn't even need the back on his booster seat anymore. Now, it's just the seat. Crazy how it seems like yesterday that James was breaking in the carrier. I am trying to figure out where to recycle it since it has expired, but have yet to find a place in Des Moines. Tomorrow, when I have more time, I will try Babies-R-Us or Buy Buy Baby. They have to know, right?

You don't look like James, or Catherine, but a combination of the two, which is funny. I don't know if it's my memory playing tricks on me, but I see so much of my dad in you. It makes me miss him, but at the same time, I am thankful I can look at "him" every day.

I love you more than you know, little man.

Friday, May 20, 2016

Just Another Manic Update: Birthdays, Bananas, and Battle of the Bulge

Where do I even begin? Probably the beginning.

James: 
I knew two years ago, when bragging to a friend, that you sleep like the dead, that I would one day pay for it. The day has arrived. You fight bedtime like it's the plague, and we have gotten ourselves into a terrible routine. You don't like going to bed. You don't like your room. You want to sleep with mom and dad (NO!). You need another drink of water. You're hungry. You have to poop (which you always seem to announce LOUDLY). It is never ending. We have tried stickers, reward programs, letting you stay up later, and everything you could possibly think of to bribe you. Nothing. Nada. You refuse to go to bed at a decent time. Then, some days, you are so tired we can't keep you awake, so you take a nap. It doesn't matter if it's 10 minutes or an hour, if you nap, you are up until the wee hours of the night. Which is hard on mom. If I had my way, I would go to bed when Drew does at 8 or 9. But nope, 10:00 p.m. rolls around and you are still awake. I have tried cutting out sugar, reading more, letting you watch a movie on your tablet. Finally, after wracking my brain, I thought that maybe you have some sort of weird separation anxiety. So like any reasonable, responsible adult, I googled the shit out of it (my M.O. don't forget), and low and behold, I guess it's a thing. And it started to happen right before Drew got here. I am hoping you will grow out of it, but every night, it's a battle. Most nights, we just wait until you pass out wherever you decide and then move you to your bed. It has been as soon as only a couple of hours later, and you're in our bed with us. It drives me nuts, because I will also pull Drew into bed with me in the wee hours of the night to nurse laying down, so I can at least REST, and all of a sudden there are four people in our king-size bed. Drives. Me. Crazy. I really hope this doesn't last, and I am really hoping that summer will take care of it when the "big kids" are at daycare with you. Ugh.

Otherwise, you are a picky eater (compared to Catherine, who LOVES steak and pork chops - weird!) and you're very smart. You pick up on things quickly and use that to your advantage as much as possible. You hear popcorn popping at 9:30 because breastfeeding mommy is hungry? Down the stairs you come, ready to tell me you happen to be hungry.

I am trying not to be a hardass for a parent, but at the same time, I am definitely a hard ass. I don't take shit, and it breaks my heart when I tell him he needs to go to his room. He will say things like, "You are not being nice to me, mom!" You're right. I'm not being nice to you, son. Because it's my responsibility as your mother to make sure you don't grow up to be stupid. So, if I have to be mean this one time (or multiple times), then so be it. But on the other hand, when we shut his door to put him in time out in his room, he freaks out. I mean, FREAKS out. Screams about monsters and how he's scared. I honestly think he's afraid that we won't come back to get him, or something. It's rather bizarre. The other night, he climbed into bed with us while nursing Drew (pretty sure Drew's crying woke him up) and he told me he had a dream that he was on a school bus with the "big kids" and the school bus made him get off and then he couldn't find his way home. And while he's telling me this, he honest-to-God started crying. At 2:30 a.m. I was crushed. I felt so terrible for him! So I really believe there is some sort of fear there that we are going to leave and not come back. Once Drew and Catherine go to bed, James is on me like a fat kid on cake. He will not let me out of his sight. If I go downstairs to get something to drink and happen to take too long talking to Eric, he will come down adn find me and tell me he was worried because he didn't know where I was. So I think there's something there, but I really don't know what to do except let it run it's course.

Catherine:
Oh my, little girl, it has been a wild ride the past few weeks. We had your MRI, plus your allergy appointment. It was terrible to see them put you under for the MRI, but I am glad we got it done. Turns out, you have fluid in your inner ear (I was right, you asshole ENT doctor!). Why? Because of allergies, which we found out you have. But not environmental allergies, like we thought. You are allergic to... *drum roll* fucking bananas. Seriously? Milk and bananas, the two things you have at daycare EVERY DAY. We took milk out of your diet, but since it's such a low class, the allergist suggested just regular milk, cheese, milk based products like sour cream, but if it has milk baked into it, like cake or something else I cannot think of right now, you should be ok. Then we find out you're allergic to BANANAS? Again, seriously? I could not believe it. And what's even funnier is that you chow down bananas like they are going out of style. So obviously, we are no longer giving you bananas. Your runny noses are gone and the allergist said the fluid from her inner ear is most likely gone as well. You are honestly a very different little girl, even from a week ago. It finally seems like you are happy.

We have been working with the speech pathologist - she is more or less training us than she is working with Catherine. You can now make duck noises, pant like a dog (which is hilarious) say yes, mom and dad, and you have several noises for objects, but no actual words. But it's a start. I am excited to see how this summer goes.

Today was your second birthday. You weren't too excited about your gifts, but you LOVED your cake! And even though James blew out your candles, you seemed to really enjoy being sung to. You are so, SO sweet and love being a "mom." You have your babies that you carry with you everywhere, and you love pushing your little stroller around, putting them in it and throwing them to the ground a few feet later. You love helping me with Drew, including finding his pacifier and blanket any time I am holding him. You are SUCH a lover and you have the biggest heart.

You are starting to run, which looks more like a linebacker than a little girl, but you love to run around with James. You also love to play with the "big kids" but of course, it's difficult for you to keep up. They love playing with you (until you get tired and whiny!) and you love the attention. You could be pushed around in a stroller or pulled in a wagon ALL DAY LONG. You just sit like a little queen and enjoy the attention from everyone.

You are still small, still wearing 18 month clothes, but you are growing. We are moving forward, and from a year ago, that's huge.

Drew: 
I just updated everyone (no one?) on your 3 months, but I can't believe how much you have changed in the course of these 3.5 months. Sunday night was a nightmare and I happened to see every hour on the clock. It was tough, and the next night was almost as bad, but Tuesday into Wednesday, you let me sleep for about 5 hours, which I so appreciated. I felt like a new person on Wednesday! You love cluster feeding at night, which kills me, but I deal with it. By about 9:00 p.m. I am touched out. Which is difficult because that's when James is getting REALLY clingy, and I can hardly handle it. Eric has been fairly good about things though, which is helpful. Sometimes I have to remind him that I can't do it all and he can't just let me do it all, but every once in awhile, he surprises me, and for that, I am thankful. Like tonight. I am blogging while you, Drew-boo, are downstairs, asleep in Eric's arms because while I was in the shower, you started crying. It seems like my one 20 minute shower every night is the only time I can get away. Which brings me to my next header...

Touched. Out.
I told Eric tonight I would like to go 10 minutes without someone needing something from me. Tonight, when we were packing up to go get our new couch (yay! new furniture!), I told Eric I was going to park in the street so he could easily back up the driveway to unload our couch. He said, "You should park behind the trailer." No. I don't want to fucking park behind the trailer. I want to park in the fucking street. I hate parking behind the trailer. I have to get out in the grass, and then the next morning, I have to walk through wet grass, with nice shoes, just to get into my car. And my car sticks out into the sidewalk, so it's hard to see the kids when they are running from one house to the next with the neighbors. So no. I don't need you telling me where to park my damn car! My dad used to do that too, and it would drive me nuts. "You should......" NO. I shouldn't do anything you want me to! I didn't ask for your damn suggestion! Overall, I just want people to not need something from me, or tell me what to do, for like, 10 fucking minutes. I just need 10. fucking. minutes. Ugh!

Mobility Yoga and PT Graduation
I had to skip last week's mobility yoga because something happened (not sure what, I can't remember back that far) and I couldn't make it. Ahh, yes. I forgot my damn milk at school, in a cooler without an ice pack. So I had to go back for it. Damnit! So I missed my second yoga class, but was able to go this past Monday. It was awesome. After a night from hell with Drew, a day from hell at school, I honestly did not want to go. But I am so glad I did. I'm not really into that whole namaste shit, but it was awesome to stretch my body and feel good while doing it. Then I had physical therapy on Wednesday and tadaaa! I graduated! I can officially feel my leg! And my foot! Although as I sit right now on this bed, it's tingling, but I'm sure it has to do with the fact that I'm sitting poorly. But seriously. I finally feel like I can walk normally, although it still takes a bit to get going from the sitting position, but I feel much more limber. I am going to look into yoga classes for the summer.

Battle of the Bulge
I am still at the weight I was when I blogged the last time after having the flu. Which is not a huge deal, since I figured I would bounce back up a bit after I started eating. But honestly, I am about 14 pounds from where I want to be, and that's pretty good. I still hate how I look and dressing this body is difficult, but I can honestly say I am starting to really tell a difference between the same clothes that were once pretty tight to now where they fit me snugly. Especially my nursing tops that I got right after I gave birth. Those are getting fairly loose, to the point where they shift in the middle of the night and I leak all over. It's awesome. So I've pulled out some of my old ones from post-Catherine and they are still a little tight, but better that than too big!

The Kitchen
Our kitchen backsplash came in, and I am excited for Eric to start putting it up. I can't believe we actually found one we both liked, but we also talked with a designer who led us away from glass tile and to natural stone back splash. And BOOM, that was it. Also, Eric got a huge discount for being a contractor and working out some deal that he would have his clients now pick their stone from this particular place. So I guess there are perks to having a home that is never finished: a contractor-husband who can get you good deals. All in all, we have done our kitchen remodel for about $8000 and our bathroom remodel for about $2000. Considering Eric would charge anywhere from $40-50,000 for our kitchen remodel in someone else's home, I think it's safe to say we are definitely ahead. It's nice to have almost 50% equity in a home. And once again, we are doing it all on our own. Buying a "fixer-upper" was the smartest thing we could have done for ourselves.

So that's it. Life is constantly moving, and I am always feeling like there truly aren't enough hours in a day, but summer is almost here, and life will slow down a bit. And for that, I am thankful!



Wednesday, May 4, 2016

3 Months!

My little boo-boo is already 3 months old!!!

You LOVE to smile, especially in the mornings, which always makes me sad since we are always in a rush to get the three of you dressed and out the door. You love hanging out with James and Catherine, and they absolutely adore you. I may have been incredibly upset when I found out I was pregnant with you, but I have to say you have fell right into this chaos and made yourself our blessing.

You are cooing and every once in awhile, I hear something that resembles a laugh. It's so similar to Catherine's when she was that age too. It's adorable.

I think you have stopped liking your Rock-n-play to sleep. Last night, while I was puking, I fed you and left you on the bed where you promptly fell asleep. So tonight, I think we might try putting you in the pack-n-play. Although, I'm not sure where we might put the pack-n-play, but hopefully it fits right in between my bed and the window. It will be annoying, but we don't have much of a choice. Hopefully tonight, your dad and I can figure out a better arrangement for you, especially since you'er only waking once to nurse.

Breastfeeding is going better than I could imagine. I pump anywhere from an ounce or two to a whole bottle more than what you eat at daycare, so I have quite a stash already saved up. I will be thankful when summer gets here and I no longer have to pump for three months. Thank God! I believe you reverse cycle quite a bit where you eat the majority of your food at night, but I don't mind. You nurse about every two hours until you fall asleep at 8:00-8:30 and then you wake up about 2 or 3 to nurse and you go right back to bed.

You are such an easy baby, for which I am so grateful. You are such a blessing to our family and I am so glad you are here, baby boy.

Battle of the Bulge, Part III: 12 Weeks

Nothing helps you lose weight like having the flu. 

I steadily puked my guts out last night, WHILE watching a 3 month old and a 2 year old, last night and into the early morning hours. Complete with a fever, chills and every ugly thing you can imagine that accompanies the flu. I think the most impressive part of it was that I was so determined to NOT dehydrate, and therefore lose my milk supply, that I drank a shit ton of water. Only to puke it back up a little later. It was pretty epic. Also epic? My bad ass parenting skills while Eric took James to his wee ball game. Somehow, I kept Catherine entertained, nursed Drew, and puked so hard I had to jump in the shower to rinse off. Pretty amazing that I survived, as I thought for sure I was going to die at about 3 a.m. But here I am, on the other side, having survived. Maybe that's the definition of a supermom. 

So here I am, about 13 pounds from my goal. The hardest part about all of this has been trying to squeeze myself into clothes that were made for someone who weighs about 13 pounds less. I had a concert Monday night, and I put myself into my concert dress, but still felt like a fat pig. Eric thinks I have body dysmorphia, but I call it realism. 

But I have to be honest, I am pretty proud that I have lost at least 10 pounds on my own since I started this journey 6 weeks ago. That's pretty stellar, but it also helps that I am breastfeeding. So I am down four more pounds thanks to the flu. It's been interesting to see how slowly the weight comes off, but at the same time, it has come off so quickly. I just started this journey. 

I have signed up for "mobility yoga" through Des Moines University. Pretty much, it's yoga designed for people coming back from "injuries." I would consider having three huge babies in the span of four years injurious. I am doing all my exercises regularly (planks, clams, "superstars" and some stretches that throw me back to sophomore volleyball), but I am still having issues with my hips and not being able to feel my left leg/foot. After laying in bed all night last night and puking my guts out, and my back is killing me. In fact, I am having issues just walking around today. It sucks. A lot. But I will continue with my exercises, start my mobility yoga and hopefully, things will get better. 

Otherwise, we are moving onward. Here's to week 12, down 38 pounds since I walked into the hospital to have Drew at 39 weeks and 6 days!