This is bananas

My daughter is not a good teethe-r. She does well during the day, followed by a mediumish okay evening, all culminated with a drool, scream, not-gonna-sleep-cause-it-hurts bed time routine. We have tried Tylenol, Advil, amber necklaces with "soothing healing oils", teething tablets, and ora-jell -- all together. Nothing works well enough to allow the over tired child to sleep.

We've got a few tricks, one is new. We put her in the middle of a blanket. I grab two corners, and my wife grabs the other two corners. We pick up the blanket with the unhappy baby in the center, and swing her back and forth. Immediate silence and delighted leg kicks. This is a wondrous new discovery but as it turns out, this requires two people and long sustained swinging is not possible as arms quickly fatigue.

The other sure way to soothe the screamy child is to take a trip to the mail box. Our mail box is roughly 150 yards away past lots of houses. As soon as I grab the keys, the ornery babe and open the door, like an obedient puppy she's silent. You see, there is a very special treat that she loves so much that she'll quit all fuss in order to enjoy. Trees.

There are 8 accessible trees from our front door to the mailbox. She knows exactly where they are and which she likes best. She will immediately sit back in my arms in a reclined position and stare up at the first tree in front of our house. She'll coo happily and tell me that she's enjoying the tree - completely forgotten about the mouth pain.

When we move away from one tree she objects until we arrive at the next, where happiness returns. This will continue until we get to the mail box, where no accessible trees grow. It isn't simple at this juncture: baby, plus operation of the key, extracting the mail, re-locking the box, securing the key and figuring out how to hold the mail while balancing the baby. She hasn't been dropped yet. What is bad? There are no trees near the mail box, causing dismay in my daughter.

Upon departure from the mailbox, we return to her favorite tree. I believe it is a Chinese Elm that has a large canopy, enough for father and daughter to stand under. As the wind rustles the branches and leaves, she'll look up at wonder immediately settling down from her time spent at the mailbox without a tree for pacification. As we make our way back to the house counting down the trees, she protests each time we leave. By the time we return to the house, she is usually in a better mood.

My daughter - the arborist.

Sadie's first OT

After our experience with PT on Tuesday, I didn't really know what to expect with OT. But we already had some positive things: 1. I'd met our OT before and knew she liked Sadie, 2. She was coming to our home, so we'd be in a comfortable environment and no car screaming, and 3. She's a woman. Call me sexist, but I just think women are more naturally gentle and sensitive to babies, maybe it's hormonal...

Sadie had an okay night last night, but she woke up way too early, and I got her to go to sleep for another hour or so, but still, she was going to be ready for a nap, right in the middle of therapy. Then I realized why she was awake...there was poop ALL OVER the bed!! (that's a new place we haven't had poop yet!) So, I got her up, cleaned her off, stripped the bed, started the laundry, put some clothes on her (and me) and just as I was starting to eat my breakfast the doorbell rang! It was okay, though, because Sadie was in a good mood, and that's what mattered. This is Jessica, she is out Occupational Therapist (and she reminds me a lot of Bethany Jennings, don't you think?)




Jessica brought this orange foam wedge with her, and the first thing we did was use it for tummy time. You can see here that Sadie wasn't in the mood to lift her head up. Brian got her to do it, but I didn't get the picture because the camera battery died and I was switching it. One thing we've noticed is that when Sadie is mad or not feeling well, she can't be made to lift her head, even when she's being held. That PT we visited Tuesday, he said that when she has such a powerful emotion it takes over in her brain and her motor skills shut down. So, it's not that she won't lift her head, it's more like she forgets she knows how. Anyway, she doesn't look too upset here, so I don't know what her problem was!



When Jessica came to do the eval, we talked about how Sadie really likes the bouncy chair. Today she asked about that and she taught me a new word: vestibular. (another thing I like about Jessica is that she didn't assume that I didn't know what vestibular meant, because she understood that I know a lot about my child.) Your vestibular system is related to your inner ear and mainly effects your balance and spatial orientation. You can read more about it here. The immaturity of Sadie's vestibular system could be why she likes the bouncy chair so much, it resets her with the rhythmic, organizational movement, and she perceives order through that and is able to calm down. But our concern is that she's about outgrown the bouncy chair, and once she can sit unassisted, it will no longer be safe for her to sit there, so what do we do then? She showed us how we can make a blanket like a hammock and swing her back and forth, which stimulates and resets that vestibular system. Granted, it's a lot more work, and it takes two people, but it might be all we've got until she can regulate herself.


One of Sadie's big goals is to be aware of and use her hands. So, Jessica put this ring on Sadie's arm to try to get her to recognize something is there and bring her arms together in an effort to remove that ring. Of course, Sadie can't do that yet, but she did move her arm across her body as if she was trying to get that ring off. She seemed to be aware of it, so that's good. This is definitely something we can practice more. She even showed us how if we lay Sadie on her side it encourages bringing those hands together and that will help.

One thing she said was that Sadie seems to still be stuck in many of her newborn reflexes, so positioning her body and repeating motions (like reaching out to touch something, rolling, sitting up, etc.) will teach her brain to USE her muscles, not just succumb to reflexes. I bet you didn't realize all this reorganization and brain-training happens in your child, because most children's brains learn to do this stuff with minimal assistance. My child, however, is going to need a lot of help with these things, but I'm confident she'll get them eventually!



She also worked on loosening up Sadie's legs. She is very tense all the time, so we tried to put her on her hands and knees, with legs bent (crawling position). She didn't last long...but we did more after Jessica left and Sadie took a little nap.



















She worked on sitting with Sadie, which we do a lot of. Sadie is very close to doing this on her own, and I bet in another couple of weeks she'll get it. It's a hip-relaxing thing that's holding her back. Because of Sadie's high tone, she can't (won't?) turn her hips/knees out, which she needs to do to sit.

Jessica also came bearing gifts. She gave us this new toy that vibrates. It's supposed to vibrate as a reaction to a baby biting it. But I guess having the vibration in the mouth helps with that oral aversion. Sadie, of course, being how she is about things in her mouth (which is precisely why we need this toy), didn't bite down hard enough to make it vibrate. So, Jessica had to squeeze it and put it in Sadie's mouth. I think she kind of liked it!


Overall, it was pretty low-key. Definitely no screaming, working with Sadie at her own pace instead of forcing her, and lots of letting her adjust to new things. I'm looking forward to having OT again, I think Sadie will really start making progress quickly now!


P.S. I talked to our therapies coordinator from the State and she said I should definitely not go back to that PT! But the good news is that he did the eval so we can take that eval wherever we decide to go and start therapies. We don't have to start all over from the beginning. We're on a bunch of waiting lists, so hopefully someone will call soon!

Sadie's first PT

We went to PT for the first time yesterday and it was horrible. Seriously, I cried all the way home...so did Sadie.

My first clue should have been the way they talked to me on the phone when I first called, but they were the ONLY ones out of pages and pages of agencies who would even take a new client. And we had to drive to them, which isn't ideal, I'd rather have them come to us...but that's damn near impossible with PT. So, I was desperate and willing to give them a try.

When we got there, we were 15 minutes early. I didn't know how long exactly it would take to get there, and I figured we'd have some paperwork to fill out. Sadie was coming off a not-so-good night's sleep. She had woken up at 2:30 and not gone back to sleep until 7:45. She slept until the last minute when I woke her up and strapped her into the car seat. So, she didn't scream the way there because she was still in wake up mode. But she was still really tired.

I filled out the paperwork, and then we still sat there for another 20 minutes. Our appt was at 10, nobody called us back until 10:20. As I sat there I examined all the certificates on the wall in the lobby. There were at least 8 different ones, from 2 different countries. Apparently, the PT who runs the place is Nigerian. And so were his staff, all of them. He was well qualified with 2 Bachelor degrees and a Masters in PT, as well as memberships to different PT associations and things. I thought to myself, "don't be so quick to judge, Christie, maybe this guy is a treasure hidden in the ghetto." Nope.

Next red flag should have been witnessing how they talk to the other kids that were there. I truly think it's cultural, because they all did it. The lady would come out to the lobby and almost criticize the kids who she was calling back. And I heard Bob, the PT, working with a kid who seemed to NOT be doing what he wanted so he'd yell, "NO!" at him. I sat there thinking, "I hope he doesn't yell at my kid like that!" Nope.

It was finally our turn, and we went to a back room and then Bob walked away. He was gone long enough for me to put Sadie on the floor, change her diaper, clean myself up, and even play with her a little. Then he came back and we talked. I told him all about Sadie's birth and how the damage happened, and he asked me questions about what she's able to do now, what she likes and doesn't like, how she reacts to certain things, and even showed me what her body language right then told us about what's going on with her. He was VERY smart. But then he started telling me there's no reason to do an MRI at 6 mos because they won't really be able to see what's going on until she's 2 or 3. Fine, Mr., but it's not like I am requesting the MRI, a neurologist recommended it. He went so far as to tell me we SHOULDN'T do an MRI until she's 1. I told him they probably wanted to compare it to the one at birth. He explained to me different kinds of tone in the body (I already knew this) as if this was the first time I've ever heard of these things, then showed me that she has high tone in all 4 of her limbs. We also talked about her hyper sensitivity to certain stimuli and he told me that the Developmental Psychologist SHOULDN'T have been the person to tell me this, it should have been an OT (being careful to explain to me what an OT is...as if I didn't know). Then he argued with me about it. Sorry Mr., it's already been done, I don't know what you want me to do about it now!

So, then he got down on the floor with her and went "HEY!" in her face. Maybe he was trying to get her attention or something, but that just seemed like a pretty harsh way to do it...I can think of better ways. Then he picked her up and put her on her tummy, she immediately started screaming. He stuck her arms out like a starfish and wondered why she didn't lift her head. It's hard for me to lift my head like that too! Then I got the lecture about the crying. I told him we really work on having a no-cry household (which is TOUGH) because we feel like she has enough stress and we really want to try to meet all her needs so she has no reason to cry. Plus when she starts, it's sometimes hard to get her to stop, so we try not to let it start. He told me that when I respond to every cry I'm letting her manipulate me. I protested and said, "she's ONLY 6 mos old! All she can do is cry to let me know something's wrong or that she needs something!" I understand that doing tummy time and some of these exercises will make her cry, and that's okay to a degree, but I also know different cries, and which ones are just mad because I'm making her do something she doesn't like, and which ones really need me because something hurts.

When he started putting her on the floor, forcing her legs to bend when she was holding them straight, she was crying like it hurt. He wanted to show me some positions to work on at home, but she fought him and SCREAMED and cried like she was in pain. At one point I told him, "she's HURTING, please stop." He told me she's not hurting, but that it's her brain protesting to using different muscle fibers in ways she's not used to and it's making her cry. Fine, but then when you're done, please at least hold her and tell her good job and that everything's going to be okay and that we're doing this to help her. Instead, he cradled her and SHOOK her (as opposed to the bouncing we do with her which is a little more gentle), then went, "ayayayayay!" IN HER EAR!! And clapped all loud in her face. No wonder she kept screaming at him. Poor baby.

I asked some other HIE moms and they say PT is hard and sometimes they cry DURING PT... instead of waiting til they get in the car like I did! And now that I write it out it doesn't seem that bad. But all I kept thinking as we walked away from that place was that I needed to save my baby from that bad man. It may not seem so bad written out, but my gut is telling me to not go back. I called the pediatrician and she said she'd see if she could get Sadie into PT at the children's hospital. We'd have to pay copays, it wouldn't be covered by the state, but we're on a bunch of waiting lists, maybe it would just be temporary, or we could double up...or maybe we'll find a PT that we love. I hope so.

...out of the mouths of babes

When I was in Oregon last week (wait, 2 weeks ago now! whew how time flies when you're not sleeping!) I spent the 4th of July with my best friend, Anna, and her family. She has 3 boys, Jack-4, Scott-2, and Nathan-3 months. They all have their personality quirks that make them so cute. Jack, being the oldest is the perfectionist. He doesn't want to do anything wrong because he doesn't want to upset or disappoint anyone. And he's blonde. Scott doesn't care what anybody thinks, he's gonna do whatever he wants on his own schedule. And he's cuddly. Nathan makes the funniest faces, you can tell already he's gonna be the funny one :).

This story, though, is about Jack. He is curious about lots of things and is a good question-asker. And often, according to Anna, once he gets his answer he's satisfied and doesn't bring it up again...very mature, especially in this situation...

We were getting ready to walk into downtown Harrisburg for some 4th of July festivites and street food, so I was changing Sadie's diaper. I was just doing it right there on the floor in the living room when Jack walked by and did a double-take. Keep in mind Jack has brothers. He stopped and just stood there watching me. I didn't know what to do...should I address it? Should I ignore it? Should I tell him to mind his own business? Instead, I panicked:

Me: uhhh, Anna?
Anna: Jack, Sadie's a girl.
Jack: Where's her penis?
Anna: Girls don't have penises. Mommy doesn't have a penis either.
Jack: How does she pee?!
Anna: She has a hole she pees out of just like you, only she doesn't have a penis.
Jack: Can I see it?
Anna: No
Jeremy, Anna's husband: I know buddy, it still freaks me out a little too.

The no-cry sleep solution

I got a new book by Elizabeth Pantley called The No-Cry Sleep Solution. Out of the three books I've read to help with sleep, this one seems to be the most practical and useful. Instead of telling parents that in order to change a habit, you have to break the child's spirit by letting them cry until they realize it does no good, Pantley instead gives parents a variety of tools to use when teaching their baby to sleep. I have devoured this book in about a day and a half! She even gives suggestions on how to teach a baby to learn to go to sleep WITHOUT SUCKING!!! I'm SOLD!

Pantley's main idea is that we need to understand sleep patterns, that babies (and adults) don't stay asleep, they go through sleep cycles where they have periods of waking. And if your baby falls asleep while nursing or close to you and snuggly and warm, then they wake up by themselves, in a bed, in a room without you, they are confused and become upset. They want you back, so they can be comforted back to sleep. Once you understand this, you can help your baby learn to self soothe. You can help your baby put themselves back to sleep when they reach these waking periods, just like you and I do when we roll over, pull those blankets up a little tighter, and go right back to sleep.

Sadie is learning these things. I've taken what I learned in the Dr. Sears Sleep Book and the book by Dr. Weissbluth, and actually started a lot of the things Pantley suggests...but she has MORE ideas. And she advocates trying your new routine for AT LEAST 10 days, then re-evaluate, renew if needed, and try again FOR ANOTHER 10 DAYS. And keep doing this until you get your child sleeping 10-12 hours at night, without your help to fall back asleep.

Our Sleep Plan starts tonight (provided we don't have a screamy teething episode).

*Sadie's bedtime is 8:00

*We will begin our bedtime routine at 6/630

*Our nightly bedtime routine:
6/630 - bath, jammies, read a story (or bounce in the bouncy seat)
7 - medicine and nurse
8/830 - asleep, move to her own bed

*We will follow a flexible, but predictable daytime routine:
730/8 - wake up for the day
830 - play therapy (Mondays with Claudia, daily with me)
930/10 - Nap #1
11 - OT or PT
1230/1 - Nap #2
play, run errands, swim, spend quiet play time in crib, etc
4/430 - Nap #3 (if needed)
5/530 - playtime with daddy while mommy makes dinner
530/6 - mommy and daddy eat dinner
6/630 - bath, jammies, read a story
7 - medicine and nurse
8/830 - asleep in her own bed

*Nap times will be: 930/10, 1230/1, and 4/430 if Sadie is showing signs of needed a third nap

*I will encourage naps by nursing, swaddling or wrapping tight in a blanket, lullabys, bouncy chair.

*I will help Sadie learn how to fall asleep without help by 1. spending daily quiet time letting Sadie "play" in her crib so she becomes comfortable and knows it's a safe place, and 2. encouraging her to fall asleep for naps in various places and ways. ie. nursing, bouncy chair, swing, wrap or ergo, car (?!!!), etc.

*I will introduce a lovey: pink cow blankie animal. We will snuggle with the lovey for naps and Sadie will have it when she goes to bed.

*I will make night sleeping different from daytime naps by keeping nighttime quiet, dark, and peaceful.

*I will develop key words as a sleep cue: "shh shh go to sleep sleepy girl"

*I will use the Baby Einstein lullaby CD also as a sleep cue.

*I will change Sadie's sleep association by attempting the "Great Pantley Pulloff" This involves teaching Sadie to fall asleep without sucking. Instead of always letting Sadie fall asleep nursing, let her suck for a few minutes, or until she's done actually eating, until her sucking slows and she's getting sleepy. Then break the seal and gently remove the nipple. At first I expect her to protest, and that this will be repeated SEVERAL times the first week or so, but eventually (I hope) she will learn to fall asleep without sucking.


*I will help Sadie fall back to sleep when she wakes while transitioning her to her own bed by attaching her crib as a sidecar to our bed. (We did this yesterday and I LOVE it!) see picture above.

*I will help Sadie fall back to sleep step by step when she wakes in the night:
1. If Sadie is truly awake, I will pull her to me gently to nurse. Once I feel her stop drinking and switch to comfort nursing, or go limp like she's fall back asleep, I will gently remove the nipple, keeping her close to me. Keeping this connection will help her fall back asleep without sucking. If she stirs, turn on the music and whisper my sleep cue words. When I feel like we've got step 1, move on to step 2.
2. When Sadie wakes up and is actually hungry, pull her to me to nurse. Once she's done nursing, and she's showing signs of falling back asleep, gently slide her back to her crib. Pat and touch her, whispering my sleep cue words and turning on the music until she's back asleep. If she's not hungry, just awake, skip the nursing and just pull her to me to cuddle until she shows signs of falling back asleep, then gently slide her back to her crib. If she gets upset or cries at any time, revert back to step 1 and try again next time. When we feel that step 2 is working, move on to step 3.
3. When Sadie starts to make wake up sounds, turn on the music, pat or touch her and whisper the sleep cue words until she falls back asleep. If she wakes or gets upset and cries, revert back to step 2, or even step 1 and try again next time. When we've gotten step 3, move on to step 4.
4. When Sadie starts to make wake up sounds, turn on the music, pat her gently once or twice, then whisper the sleep cue words without touching her. If she wakes or gets upset and cries, revert back. When we've gotten step 4, move on to step 5.
5. When Sadie starts to make wake up sounds, first determine if she needs the music, don't move closer to her, but turn towards her and whisper the sleep cue words from where I'm laying. If she wakes and cries, revert back, but keep it brief. When we've gotten step 5, move on to the next step.
6. Don't move or turn toward her crib when she makes wake up noises. Just say the sleep cue words from wherever I am, barely letting myself wake up.

*I will keep in mind that we may never make it through all the steps before Sadie is sleeping through the night on her own.

Now, we start implementing this plan, and pray hard that it works. I understand that with Sadie's hyper sensitivity she may take longer to "train," but I am confident that if we're (I'm) consistent and keep at it, eventually we will see the results we desire. Check back with me in 10 days and we'll review how it went!!

Ouch! Teeth! And a banana picture.

This week we have learned a lot about our daughter. Much of it learned at our fragile nerves expense. She cries longer, harder, louder than we imagined a 15 pound ball of fury ever could. Her record at this moment is 12 hours however we judge that she could have gone on infinitely longer. She only stopped at t w e l v e l o n g h o u r s due to our drugging her into a peaceful rest period. I believe she could cry for a good 24 hours ensuring that we, as mother and father, feel every bit of her pain.

We've been enjoying late nights as a family huddled around one or two stubborn teeth that refuse to move any faster then their current slow, deliberate painful pace. We think that these particular teeth must be deformed carrying terrible tiny sharp points all over causing extra awfulness. I'm not sure it is possible for one normal tooth to cause such agony. As I tongue my own teeth I wonder if my parents suffered as I suffer so.

My wife is an amazing woman. She's gotten less sleep than I have as she's a human feeding/pacifying/holding-the-baby-while-she-naps-for-fear-that-setting-baby-down-will-cause-premature-wakefulness machine. When we snap at one another at 3 in the morning, wondering how such a small human continues to wail at such deep dark hours of the morning, it always strikes me that there is no other woman I'd rather snap at. Even though I complain that she should have tried the left boob instead of the right and the left boob was the holy sleep grail and she should already be asleep due to my obvious suggestion. In reality nothing pacifies our little munchkin except fatigue or acts of God who we are thinking is not merciful - at least this past week.

My wife is bound boob to mouth to our child and I'm grateful that she's able to do so. Her boredom is mighty as she is tied to the couch with our child alternating between feeding struggles, bouncy chair manipulations, naps, cry fests and the slow transition between the various Sadie accepted stages. I love her very much and never tell her enough how much I'm delighted that she's my wife who bore my ever-tension filled babe.

I love you Christie.

--

Our picture this week is telling. It has been over 110 for the past week with nary a cloud in the sky. The banana has scorched a bit and the bucket watering hasn't been sufficient due to the heat. Many of the sun-loving leaves have scorched creating a sun damaged plant. I, in the 110 degree heat, decided that this was unacceptable and finally ran a slow drip system line from our water valve to the banana. I can now water slowly for long periods of time in order to help water absorption allowing the plant to recover better from the unrelenting heat. This required trench digging, measuring, adapting, burying and testing. A trial indeed to me to help save and nurture out damaged banana plant. Obviously this lends nicely to a metaphor with our daughter.

Grandpa came over and played with an amazingly delightful Sadie this afternoon to give us a bit of a break in order to accomplish basic chores around the house.

Thanks Gramps!

No Pain, No Gain

When I was a Sophomore in High School I had a paper route. I used to get up at 4:45 (which doesn't seem like a big deal to me now, but for a teenager, it was torture) to deliver papers. I'd immediately get ready for school when I'd get home because I had a "zero" period, which meant school started earlier for me (but that I had a longer lunch), then after school, I'd go straight to swim practice. Most days I left the house around 7am and didn't get home until almost 6pm. It was tough, but I found time to do my homework, eat, hang out with my friends, and even sleep (a little). And I enjoyed the extra money, but I won't say I was sad to let my paper route go. Looking back on that a couple of years later, I couldn't believe I survived. And I have a feeling I will think the same thing when I look back on this time in my life.

Recently I've had a number of people tell me they're impressed with how well I do with Sadie. And while it means a lot to be told I'm doing a great job at parenting my special-needs baby, I also kind of feel like I do it because I don't have a choice. What are my options? Love her and do everything in my power to meet her needs and make her happy, or...? I don't see an alternative.

Right now Sadie is teething, in addition to a scheduled sleep regression at 23-26 weeks (we're in week 25, so I'm crossing my fingers she'll be over this nonsense soon!), and daily I feel like I'm driven to the point of insanity due to exhaustion. Sometimes it's crying for 5 hours, sometimes it's just waking up for 2-3 hours in the middle of the night. Sometimes it's not napping, sometimes it's not going to sleep until after midnight and waking up at 5am. Whatever it is, it's hard, and I'm reminded of that time in my life when I had a paper route and swim team...except this is 10 times harder because my heart is involved! I don't always feel like I'm doing a great job when I'm whining to Sadie, pleading with her, to "PLLLLEEEEAAAASE just go to sleep!" And I don't feel like Wife of the Year when I snap at Brian because he's sincerely trying to help, but he just doesn't know how it feels to have a baby (sometimes LITERALLY) attached to you ALL. DAY. LONG. It's very unbecoming when Sadie starts whine-crying and I'm doing in right along with her. Tonight, as I sit here at 12:45am writing this, I even told Sadie that this non-sleeping thing is going to drive me to insanity...I feel like I'm already so close.

But to others, you see differently. You may know what it's like to have a happy baby, or even just a normal baby, and you see that it's different for me. To me, this is all I've ever known, so it IS normal. Sadie cries, Sadie doesn't sleep, Sadie has to be held a certain way and needs a certain amount of motion in order to be satisfied, and Sadie (STILL) hates the car. So, thank you for the compliments, thank you for the support, and most of all thank you for the help. (Anna, there were a couple times last week that you saved me from having a break down! And Shelly, I know you're far away, but right now I'm REALLY tempted to call you because the night is so lonely...but I wouldn't be able to hear you anyway probably over Sadie's crying.) I think the only respite I truly have is knowing that this won't last forever. Before I even know it, Sadie will be a beautiful healthy 10 year old, on the verge of puberty, sleeping through the night in her own room, wanting to wear makeup and starting to wear deodorant, and I will wonder where my baby went, and I will look back on these hard times and wonder how I got through.

Let me leave you with this quote (ironically from my cousin's facebook status! ha!) You never know how strong you are until that's the only choice you have. This is the only choice I have.