Saturday, July 31, 2010
I love my brother, and I respect his career choice, I'm even more impressed that he can make money at it. He does hip hop...my brother is a rapper. And he's good too. Now, rap isn't my music of choice, but I have heard enough to know my brother is talented, and I'm not just saying that because he's my brother. Well, maybe a little bit. His "name" is Sapient, and he came to Phoenix last night as part of the tour he is on. You can find out more about his tour, his music, and download free music here. (I have no idea what's up with the psycho smoking gun-toting cat)
We had the "pleasure" of listening to 6 other rappers before Sapient, and as a teacher I figure any situation can become a lesson learned, so I took the liberty of writing down some of the lyrics I heard last night and I am going to share with you what they taught me.
Lyric: don't no stop
Lesson: hip hop, like poetry, doesn't follow the rules...don't be afraid to be creative
Lyric: real hip hop...it don't stop
Lesson: if it sounds/feels like you want it to stop, it's probably not real hip hop...or worth listening to
Lyric: Get your dream on (homie) you can go a lot further if you think strong
Lesson: if you want to live it, you've got to dream it. This is basic motivational speaker stuff.
Lyric: This ain't funny, so don't you dare laugh
Lesson: If somebody says this to you you're either about to get you A$* whooped, or it really IS funny and the person saying this will laugh about it too...someday
Lyric: push like a mother giving birth...when it hurts I'm gonna push
Lesson: any hardship you are enduring in life can be compared to childbirth, because having a baby is the hardest thing anyone can do in life
Lyric: you make me wanna BREAK SH#*T BREAK SH#*T BREAK SH#*T BREAK SH#*T!
Lesson: People are angry
Lyric: if we don't make then we don't eat so we don't sleep
Lesson: if you want to get anywhere in life you gotta work hard and pay your dues
Lyric: if mama said there'd be days like this I wouldn't have grown up
Lesson: life is hard
Thursday, July 29, 2010
Wednesday, July 28, 2010
We had a rough trip over there, lots of screaming, had a hard time finding a parking spot, late to our appointment (which, you know, then I was "punished" for by making me wait longer), I was a stressed out mess (and Sadie was worse) by the time they called us back. Then a doctor I didn't recognize walked in and Dr. Wendy wasn't with her. I probably sounded like a fool, but I told her I really wanted to see Wendy because she knows us and I don't want to start from the beginning with somebody new because I don't have the energy for that. She reassured me that Wendy filled her in on Sadie, and that we'd be able to see Dr. Wendy before we left. Whatever.
I proceed then with Dr. Ruane, and as soon as she asks me how Sadie is doing I break down and start crying. At this point Wendy would have hugged me, but I don't know this new lady and here I am sobbing to her about how my baby won't sleep and I am so tired and I just want things to change. Really, she's got nothing for me...do they ever? Will they ever? But we continue and I go down my list of questions and I'm starting to really like her and she's lovin' on my Sadie, and it all turns out okay in the end...until we have to get back in the car to go home.
First of all, Sadie weighs 16lbs 5oz and is 26.5 inches long!!! But her head is the same size it was at her 4 month appointment (I'll talk more about that later). She is healthy. No fluid in her lungs, no breathing/heart/eye/ear abnormalities. I asked about her hips though. She keeps her hips very tight (which probably has a lot to do with the not sitting yet) and her legs straight. We've been working a lot on this at home, but Wendy said that many HIE babies will straighten those hips so intensely that they'll pop their hips out of socket. We want to avoid this obviously.
I had a good talk with Dr. Ruane about starting solids and she said her and Wendy had talked about that and agreed that it was probably okay to start Sadie on stage one foods. Looks like we're going to start with some pureed butternut squash! I was told to put some in her mouth (I'll probably use my finger at first instead of a spoon because of her mouth aversion) and see what she does. I was told to expect a little tongue thrusting, but after a few tries she should be able to swallow it. If, though, she's not swallowing it easily and really still tongue-thrusting after about a week, then we stop and wait another month. So we'll try that probably this weekend. Brian is out of town right now and I want to make sure he doesn't miss this, it's sort of a big deal!
I also talked with both doctors about a new neurologist. Both of them recommended Dr. Williams, who actually happens to be our doctor when we're admitted for the big EEG. They said he's very nice, and Wendy mentioned she's been in family conferences with him and was very impressed with how he interacted with the families. Wendy also said it can be tricky switching neurologists, so she is going to try to get things going from the back end before we call and make an appointment. Honestly, I'm not too concerned about it. She's my baby, I should be able to see who I want! But I think it has to do more with insurance since the doctors are in the same practice or something. Whatever, we'll meet Dr. Williams in a couple of weeks and we can maybe talk about it then.
After we were done talking to Dr. Ruane, she went to get Wendy and when they came back she must have told Wendy about my little meltdown because she came armed with prescriptions. She said the best she could do about the sleep is to give her Adavan. We already have this drug, and we reserve it for drastic situations where there's been crying for hours and hours and we've ALL reached the end of our ropes and tapped out our resources. I don't like using Adavan because it makes Sadie sort of dopey the next day, it really takes 24 hours to wear off. I feel like if we used this on a regular basis, 1. Sadie would never learn how to sleep, and 2. it would stunt her development by dopng her up. So, I declined. The prescription was for 2.5 times more than what we give her now anyway! Wendy said she would have declined it as well. She told me it's easy advice to give, but hard to take and she wouldn't have taken it either. That made me feel better. It's not about me right now anyway, someday I'll sleep again, right? Someday?
And finally, I asked about the MRI. Wendy said there were a lot of big doctor words that she didn't really even understand, but the gist was that they see no improvement. Things aren't really getting worse, but they still see a lot of damage and that isn't healing. This news made my jaw drop. How could there be no improvement?! She can nurse!! She is rolling, and smiling and "talking" and we're going to start giving her solids!! But the simple fact is that her head is not growing, which indicates that her brain is not growing. Wendy did tell me, however, that she sees progress and that if Sadie is meeting milestones, who cares what the MRI looks like. That was a little encouraging. But I did go home with visions of wheelchairs and drooling and eventually dying from seizures at the age of 12 in my head.
I guess overall I should count it as a good day, there were definitely more good things than concerning things at this appointment. It's just that if we were to weigh them on a scale that MRI would outweigh everything by a lot. It shouldn't, but it does, and it's hard not to focus on that ONE piece of news. But life goes on. Sadie is what she is and we love her this way. And if her development plateaus or if she soars beyond everyone's expectations, it is what it is. This is the child God gave me, and I am thankful she is so healthy in so many ways. And she's cute too! Man, she's cute!
So, after 10 days of implementing this sleep plan, here's what I came up with:
-Sadie falls asleep best on the couch in the living room (because this is where she usually naps), even though the lights are on and we're usually watching a movie.
-Number of nights Sadie went to sleep in her bed BEFORE 9:00: 3
-Sadie went to sleep in her bed BEFORE midnight 4 times.
-Sadie went to sleep in her bed woke up 10-30 minutes later 5 times
-Sadie woke up in the night and never went back to sleep (before the sun came up) 3 times
-Number of days Sadie took 3 naps of at least 45 minutes in length: 3 (wow, I thought we were doing so well with naps, I guess not)
-Number of days Sadie took 2 naps of at least an hour in length: 5 (I guess she is transitioning to 2 naps a day instead of 3)
What are my conclusions on all of this?
1. We need a routine. Everything throughout the day needs to be scheduled out. And that's hard for me because I am not one of those people who operates well on repetition. I mean, when I drove to work, I had to change up my route from time to time because the monotony drove me crazy! So, this is hard for me, but it's something I'm going to have to do for my child so that she knows what to expect and what is expected of her throughout the day...including when it's time to sleep, eat, play, etc.
2. White Noise is saving us all. I found a white noise app for my phone and we listen to a rain storm all night every night. This doesn't only help Sadie tune out outside noises, but it helps Brian and I sleep also. This is saving us all.
3. Pulling the crib up to our bed has proven a good idea. Even if Sadie doesn't sleep in it, it's nice to have it there so that I can veer closer to the edge of the bed without worrying about the drop-off, and so that when she DOES wake up in the middle of the night and just wants to kick and be happy, I can shovel her over there, then turn over and go back to sleep! This keeps me from having to get up and allows me to get a LITTLE more rest.
4. Sadie isn't necessarily learning to fall asleep without sucking, but she is learning to sleep without it. I've been making a point to pull the nipple as soon as I know she's asleep. This helps a lot when we're in bed, because once she's asleep and NOT attached to me, I can get more comfortable.
5. I had an idea what Sadie's lovey would be, but it turned out to be something else. We've done really well with this part of the plan. I think Sadie might even be associating cuddling up with her pink blankie as time for sleep, because naps have been going really well since I realized the pink blankie was the lovey.
6. We switched up our bedtime routine a little. We used to do bath, story, medicine, sleep...but then we realized that the medicine sometimes makes her angry, or she chokes and gags and gets all worked up after just getting all relaxed and sleepy in the tub. So, we do medicine now BEFORE the bath. It's nice to do it this way because then we're not watching the clock once we're in the tub, and the hard part is out of the way. It allows us to just relax, go at our own pace, and allows Sadie to fall asleep earlier.
7. Lullabies? We made it through a couple days of that before I realized I was waking up in the night with them in my head!! It got really annoying...the white noise works so much better anyway.
As with most things, I'm finding that most stuff has good ideas, just not necessarily for my baby. So we'll take what we can use and store the rest for future use, at least it's good information.
Tuesday, July 27, 2010
When I found out I was pregnant, I immediately started researching natural birthing options in my area. Unfortunately, the last birthing centers were shut down a few years before due to not enough use, so it seemed that my only options were hospital birth or home birth...we decided to brave it and go for a home birth. Once the idea set in, it grew on me, and I started to get really excited about having a home birth. I would tell people with pride that I was planning on having my baby at home, and I was almost smug about the fact that I was going to do it WITHOUT drugs. But it was important to be prepared, and to be prepared, we needed to get educated, so we started taking Bradley Birthing Method classes from a local instructor who had birthed 10 children in her home!!! We were expecting to learn how to relax, learn how to breath, learn how to support one another, know what to expect so there were no surprises, but what we weren't expecting was to learn so much about breastfeeding.
I knew breastfeeding was important, and it had always been what I expected to do, I had no idea, though that it was such an art. We watched videos about latch techniques, hand expression, and the importance of avoiding nipple confusion. And as it got closer and closer to time for me to have this baby, I became really excited to breastfeed her. I couldn't wait to hold her close, skin to skin, and look in her eyes and know that I am all she needs in the world.
My pregnancy was perfect. My labor didn't have any complications. But my baby came out in distress. She didn't get enough oxygen in those first few minutes, which led to some permanent brain damage. The details of all this aren't as important as the fact that as I looked at my little one laying in the NICU barely alive, I was grieving over many things, one of which was that I would probably never breastfeed my baby. In fact, in the beginning, it was looking like there were a lot of things I'd never get to do with my baby, and breastfeeding was not highest on the list. But, even while spending endless hours at the hospital, I faithfully pumped, getting hardly anything at first. I remember handing my little bottle proudly to the nurse every 3 hours basking in her praise and amazement at how much I could get out...even though I thought I should be getting more than an ounce and a half!! I was told over and over that they were keeping every drop of this milk because it was like liquid gold for my baby once she could start eating.
The day my milk came in was the day I said goodbye to my baby. We were told she would never be able to breathe on her own, and we made the horrible decision to unplug her ventilator and say goodbye. But she's a fighter, and she is strong, and she wasn't ready to go. We couldn't believe that after a couple of days, we started having conversations about taking her home!! We thanked our lucky stars. We learned how to insert her NG tube (through her nose all the way into her stomach) because she had no suck, swallow, or gag reflex, and we took home two full boxes of expressed milk. We were told she probably wouldn't make it through the week so if we didn't want to feed her, that'd be okay. And I hated that tube so much, I was okay with this (that sounds horrible, but her kidneys weren't working and she had little to no brain activity, and we were told she was going to die anyway), but my husband told me to just hang on, and soon we were seeing improvements.
I was still mourning my loss over nursing. I was starting to hate the pump. I didn't see how I'd ever be able to leave the house since I had to pump every 2-3 hours. I was dreading having to feed Sadie in public because of the tube. I just kept thinking how much easier everything would be if I could just breastfeed!! We were told I could give her a pacifier and see if we could strengthen her suck, but that babies with this kind of injury were known to aspirate and end up with pneumonia, so it wasn't safe to try to nurse her...yet. I was militant about the pacifier. I even gave it to her when I was tube feeding her because I wanted her to feel her tummy getting full while sucking. But, the nurse kept telling me we needed to test her suck/swallow before we could try to give her any milk orally.
Fortunately, I didn't listen to the nurse, because Sadie STILL hasn't had the suck/swallow test!! Exactly a week after we brought her home, her 2 week birthday, I decided it was time to try to breastfeed Sadie. So, we got in the tub, and we cuddled up with a warm, wet towel, and I put her to my nipple, but she couldn't quite get the hang of it. Then my husband suggested trying the other side. It took a few tries, but she did it! And I was surprised at how different it felt from the pump! It wasn't only the feel of the suck that was different and surprising, it was the hormones I felt releasing, I felt instantly closer to my baby even after just 3 or 4 sucks. But I didn't want to do it too much because I was still afraid of her aspirating.
The next couple of days I spent pumping, feeding her through the tube, then letting her suck a little. I attended a La Leche League meeting because she was having trouble with the shape of my left nipple. We bought a nipple shield and that helped a lot. Soon, we were trying to breastfeed BEFORE I pumped, and using the tube as a last resort. And after 5 days, she was exclusively nursing! I didn't tell the nurse at first, because I was afraid I'd be reprimanded, but when her lungs were checked and were clear for two consecutive visits, I figured it was safe. Actually the nurse was impressed and proud of us for learning how to breastfeed! But we weren't done learning.
In another couple of weeks, we were able to take away the nipple shield, a few weeks after that we could nurse lying down in bed together (oh what a relief that was!), and soon enough, I was comfortable nursing in public. Sadie is now 6 months old and she is a champion breastfeeder! She has nursed in restaurants, in the car, on an airplane, in bed, on the couch, at a baseball game, and anywhere else you can imagine her and I have gone!
Teaching my baby (and myself) how to breastfeed has been one of the most rewarding things I've done in my life. I love to sit and nurse her (especially since she's not a particularly cuddly baby) and sometimes fall asleep together. I love knowing that she knows what to do when I hold her a certain way, and that she has a specific cry to let me know she's hungry. I feel like I'm giving my baby the very best. I really feel I've fulfilled my purpose in life, in being a mother, and I don't plan on giving this up anytime soon. Maybe once it's time to enroll her for kindergarten I'll get the hint!
UPDATE: I wrote this and submitted it before posting here. I almost immediately got a response (like within a couple of hours). She LOVED my story and told me she definitely wants to use it for her website! yay!! My hope is that when others read it, they are not discouraged by feeding tubes and continue to try to breastfeed until they become successful...it's so much more than just feeding your child!
Monday, July 26, 2010
When I learned that we were going to have to basically undo and redo my root canal because something up there was infected, I was not excited. But I've had a lot of dental work in my lifetime, and I figured if I'd had a baby, I could do this...especially since I had that baby without drugs! Plus I figured it was hurting now, so at least I'd get rid of that pain once and for all! The good news was that since it was a root canal done by him that he was having to fix, he wasn't going to charge me any kind of copay. So, that was nice of him, at least I knew he didn't mess up on purpose to get more money out of me! (although I would never suspect that from my dentist, he's a really nice guy)
I showed up today with my ipod ready for my torture. I didn't know what to expect. I've been on antibiotics for 5 days already, and still have another 5 days to go, so the swelling (and pain) has gone down, but it still hurts. And I was dreading taking the crown off, that seemed really scary to me for some reason!
Instead of giving you the entire long story, I'll just list the highlights:
*in order to get the crown off, the dr. basically had to pound on it over and over (he called this tapping, but I swear my brain was rolling around inside my head when he was done!)
*apparently I had an extra canal for this tooth, so instead of the usual 3, I had 4...and he didn't see this 4th one the first time. Hence the infection. Unfortunately, after finding it, the anesthesia was wearing off and I felt all of the digging.
*My appt. took over 2 hours and at least 6 X-rays...he was very very thorough this time!
*For one of the xrays, I gagged when he put the little film in my mouth...3 times. I finally screamed, "NO!" and he took it out. I had visions of throwing up all over the dentist chair and him having to fish puke chunks out of my open root canal...that would NOT have been fun!
*I think the dr. was trying to pull my cheek all the way to my ear, and I think he got pretty close (this is the only part that actually DID remind me of childbirth...the stretching and stretching and stretching)
*Everytime the dr. would put his hands in my mouth to dig dig dig with that pokey thing that looks like a needle, he would press down on my bottom lip causing my teeth to almost go through it until I could somehow get it out of there and to safety.
*He had some kind of blow torch or something and cauterized my gums. Luckily I didn't feel it, I just smelled the burning flesh and saw smoke coming from my mouth.
*At one point he got so frustrated that he took off his gloves and dove in bare-handed!
*Then the light went out and we had to move to a different room (this set us back a few minutes, but allowed my jaw to retract back into place so I didn't have permanent open mouth)
*He was more tired than I was when it was done.
*Now I know why people choose an epidural...but I would NEVER have dental work without drugs. Oh my!
Now that I'm home and the numbing has worn off there's a little more pain. But it's not really much more than was already there with the infection and such. I really hope he took care of the problem. I'm looking forward to finishing these antibiotics and moving on with my life. This tooth has been giving me pain for 2 years now, it's about time we did something about it, no matter how drastic!
Sunday, July 25, 2010
Sadie has been practicing her sitting and she is getting close. We figure within a month she'll be sitting up on her own, looking around, plotting her next move.
We make her practice on a constant basis (that is: any time we remember and are on the floor with her and she is not too terrible). She is getting better and better. Earlier today we were outside on the patio and she was sitting on my lap - as I had pinned her legs between mine creating an anchor. She had to use her "sit muscles" nevertheless and the fact she was successful was cause for minor celebration.
This is a somewhat interesting phenomena in the arc of parenthood. We are elated to see developmental milestones yet saddened too. Our little baby is growing up into our little toddler. She's a little slower, many other younger children surpass her in developing, but our solace is that we have the opportunity to enjoy each stage of life a little longer than other parents.
Currently my favorite part of our daily routine, that I am enjoying, is story time. She really likes "The Very Hungry Caterpillar" by Eric Carle. She especially likes the pictures. The hardest part for me, as most parents perhaps are aware, is continually finding new ways to read the book to my daughter. I can change my cadence and enunciation enough to find out the most effective way to create powerful storytelling.
Also, I can master this quiz now. See how many you can do!
Saturday, July 24, 2010
So, here's what I've recently learned.
When you breastfeed your baby, her saliva actually COMMUNICATES with your breast via areola to tell your body exactly what antibodies, proteins, etc. she need right then!! So, if your baby is starting to get sick, or is low in some mineral or vitamin, your body knows to make your milk different to combat that sickness or to up that vitamin or mineral to even out your baby's body! How amazing is that?!
And here is where I read about this wonderful, God-created, amazing phenomenon.
Friday, July 23, 2010
First of all, Tami operates out of a mobile facility. So, her and her partner rent space in a church parking lot and do PT out of this trailer attached to the back of a truck. I had called them previously to see if they'd come to my home, but they told me they don't come this far south. I did have to drive about a half hour north to get to her, but it was worth it.
One of the first things she said to me was that she thought the evaluation from Bob the PT was a little ridiculous. It said, and I quote, "Sadie did not cooperate with the therapist. She was crying constantly and throwing a tantrum during positional activities. She refused to play with toys and she demonstrated significant sensorty seeking issues which have resulted into behavioral problems." I call B.S. on Bob!! 6-month-old babies DO NOT know how to throw tantrums, and she is not old enough to have "behavioral problems." We also discussed at the end that we both thought Bob's goals for Sadie were vague and unambitious. So, we set some new ones, ones that were more suited toward Sadie's personality, and ones that make more sense for her age-wise.
There are so many things I like about Tami, but my favorite (if I had to pick one) is that she sang to Sadie almost the whole time we were there. Tami understood what babies like, and she respected Sadie's communication to her, she understood when Sadie didn't want to do something as opposed to something hurting her or making her uncomfortable. The first time Sadie started crying, Tami picked her up and started rubbing her feed on things that felt different, like the carpet, the mat, etc. And she said, "feel that with your feet? That's the carpet!" Sadie calmed right down. She felt a new sensation and she was interested in what was going on.
Tami had me take Sadie's dress off so she could see her muscles working in different positions. She had her roll VERY slowly and stop at different points in the roll so that she could see what Sadie's muscles do, and so that Sadie could feel what each position feels like. She was very positive and noted that Sadie is very strong, it's just learning to control her muscles that's going to take some practice. I also mentioned that Sadie can roll, she just doesn't have a reason to since she's not really aware or stuff and doesn't know how to reach for stuff. Tami was pretty impressed with what Sadie can do.
Then we worked on sitting. Sadie did really well with sitting. Actually Tami said she's SO CLOSE to getting it. We just need to work on sitting on her "sit bones" and bending from the hips for balance. She would push on different parts of Sadie's back to kind of show her how it felt to have gravity working different directions. Then she pushed some on Sadie's thighs to help Sadie realize she needed to push those hips into the floor in order to sit.
When Sadie would fuss, Tami would stop singing and make a raspberry noise. Sadie LOVED this noise. She would stop crying every time. I love this picture above. I think it was at this point she realized it was Tami that was making that noise and that she loves her.
Overall it was a very positive experience. Tami has been doing PT with kids for over 20 years, and she knows just about EVERY person we've worked with. She knows our pediatrician, our eye doctor, she has even met Bob the PT. She had a lot of good things to say about Sadie and really feels like she's going to make progress quickly. She also picked up that Sadie is good at communicating and felt like respecting her and what she wants to do was the most important. She also felt like Sadie is very determined (as evidenced by the fact that she's still alive!) and that once she decides it's time to crawl, there will be no stopping her, the same with walking (now if we could just convince her to want to sleep!!). She told me we can promote awareness of those hands by putting pressure on her palms when she's on her tummy, and opening them up and touching EVERYTHING, especially her own body.
I am so glad we've found a good PT and that I'm actually EXCITED to go back! Next time she wants to videotape Sadie so that once we start seeing progress we can compare her to where she used to be. Very cool.
I'll leave you with some more cute pictures from PT.
Wednesday, July 21, 2010
At Christie’s urging, I recently attended a mini-seminar presented as part of the annual Oregon Bach Festival here in Eugene. The title of the seminar was “Bach and the Brain”, and it featured a virtuoso trumpet player who has recovered from a major brain injury. Also present at the event were three experts, PhD’s from the University of Oregon’s Neuroscience Department who work in a special Brain Lab on research specifically related to brain growth and development. Their website is changingbrains.org and it contains some very interesting articles and information if you are interested. Anyway…back to the seminar.
The trumpet player spoke first, and told a detailed story of having a ski accident/head injury/probable severe concussion in the 80’s, never doing anything about it, and going on with his busy professional touring and performing and teaching. Then in the mid-90’s, he suddenly had a violent seizure which left him with loss of speech, tunnel vision, loss of motor control on his left side, and an abnormal sensation like he was sleepwalking. After refusing it for several months, he had brain surgery, and the drs found a large blood-filled mass in his brain that was doing continual damage (by pressure) to various areas of function and ability. Following surgery, he rehabilitated himself quickly and returned to his concert schedule just one month later, though he still had significant loss of language, memory and coordination. What impressed me most about this man, I think, is his “driven” nature to be perfect in the one area…musical performance. He talked about “re-memorizing” dozens of pieces with the vague awareness that he used to know and perform this piece. He obviously had led a highly disciplined life as a classical musician, and had trained to a high level of perfection in musicmaking. He continued with his story of ongoing recovery, several more surgeries, and partnerships with brain rehab facilities and researchers. He now performs and teaches, and plays principal trumpet every year at the Bach Festival.
There were three panelists at the seminar who each spoke briefly about their areas of research and what they are learning from their research and experiments in brain development and recovery after brain injury.
The first scientist spoke about the brain’s capacity to reorganize and recover itself. She stated that the focus of her actual research now is seeking how best to promote “neural plasticity”, or the changeability of the brain so that it forms new connections. She mentioned cognitive exercises, use of assistive devices (like a PDA) and modifying environments for brain injured patients so that they can function with less mental effort.
The next speaker talked about the physiological changes that are seen in the brain when “thinking” is taking place. He said that when nerves are activated, they bring oxygen to their particular area of the brain, and this shows as a “color change” on a brain scan. With each brain, there is a unique pattern of organizational activity: different areas of expertise, and different methods of putting letters into words, facial recognition, etc. He gave the example of chess masters’ brains being highly developed for recognition of patterns on the chessboard. In musicians, the picture of an instrument will activate the auditory system, causing the person to actually “hear” the sound it makes. (yes, I have experienced this!) There are, of course, routine associations that most people make (apple=red, for example), but when people are pushed to make a more creative association (such as apple=computer) it activates the opposite side of the brain, crossing hemispheres.
As a side note, let me mention that I have heard and read that classical musicians have different brains (in a good way!), and observably different levels of development in specific regions of the brain as a result of their high level of training.
The third scientist to speak was a woman who has been researching the development of children’s brains. She talked about an experiment that was done on a selected segment of the population, low-income children, who would not likely have exposure to musical training. The children (preschoolers) were given dedicated training in rhythm, melody and playing music together. After 8 weeks, they showed increased levels of language skills, math skills, attention and focus, among other changes. The thesis of the research group is that music captures attention in a different way than words, activating a different area of the brain, and embeds a message more efficiently because of this. There was, of course, a control group of preschoolers who were tested in the same areas before and after the 8-week period, but without receiving the musical training, who showed no marked improvement in the areas mentioned.
All three of the researchers emphasized that they are continually amazed and struck by the seeming absence of a “limit” to what the brain can do or how far it can go in healing itself. As the research continues, the frontiers keep moving further out of sight. The brain’s systems change throughout our lives, and are vulnerable to damage as well as open to improvement. It is still not well understood how much of our behavior and knowledge is genetically programmed, and how far it can be enhanced.
So back to my favorite little redhead, Sadie. We keep hearing that her brain is not “normal”. The experts have said there was little or no function and she couldn’t sustain herself (breathe, swallow, etc). Here we are six months later and she is definitely living and learning! She can eat, she can express herself with smiles, coos and cries, she responds to sounds and touch, she can see some things (not sure how well) and she has touched so many lives with her dear little personality! She loves music, likes certain colors better than others, and enjoys being in the water. This is no vegetable! Who knows how far her brain can recover itself and reorganize to create “normal” functions for her future?
It took me a long time to discipline myself to sit sown and write this post, mostly because I didn’t want to just share a bunch of information with no application. So what is the bottom line?
Get this little girl in music lessons ASAP!!
She will amaze us all and we will love her more than ever.
Tuesday, July 20, 2010
Sadie had an excellent night of sleep, woke up to nurse at 6:30, but went back to sleep. When Brian got up at 7:45, I debated as to whether I should wake her up or just let her sleep until basically until the doorbell rings for OT! I figured since she doesn't usually want to eat right when she wakes up, letting her sleep as long as possible is my best bet. She woke up on her own at 8:25!
OT went great this morning. Sadie was pretty relaxed and, as you can see above, did a good job bending and stretching. She actually sat like this for 10-15 minutes! She had some good tummy time and she laid on her back and we tried to get her to kick stuff, but she wasn't in the mood. And she actually didn't tell me really that she was hungry until about 10, and we had to leave at 10:30, so it wasn't that bad.
When we got there, Sadie was screaming her head off, which I think was residual from the car ride mostly, but it probably didn't help to be held by mommy, who smells like milk and won't give me any!! Enter daddy. As soon as Brian took her, she calmed down. We got her checked in, got her little hospital bracelet, and then we went back to the MRI center, where we waiting in this little room, and where Sadie continued her screaming. By this time she was starving, I'm sure, having not eaten since 6:30 and it's now 11:30!
They weighed her, answered our questions, asked us a bunch of questions, told us about the anesthesia, etc etc etc. Sadie screamed her head off the entire time. Then we waited for the doctor, and when he finally came in, the nurse offered to take Sadie out so we could actually TALK to him!! Then he took her, we kissed her and said we'd see her in a little bit, and we were escorted out to the waiting room.
We spent the next hour sitting here. We did crossword puzzles, watched people, and tried not to get sucked in to One Life to Live on the television! We also ate the lunch we had brought with us, and visited with some friends, who unfortunately have been "residents" of the hospital for the last few months since their son got a lung infection.
When Sadie was done, we were escorted back to her recovery room. She was so cute all bundled up on the HUGE bed! Her eyes were open and the nurse told us she had woken up pretty quickly and easily. So I held her and tried to feed her, she took a few sucks, but decided she was too upset to nurse. Her throat was all raspy, her crying gurgly, even her voice sounded funny. The nurse told us they had put in a breathing tube, but not the big huge one, and that older patients have said it doesn't leave them with a sore throat. But I think Sadie had some throat irritation. She also had an IV in her hand and the nurse gave her some fluids since she wasn't nursing right away. This helped her from being dehydrated. Later, we asked the nurse to just take it out because we were pretty sure it was bothering her. I tried several more times to nurse and she was just too upset/tired/groggy...eventually she fell asleep in my arms, we signed the paperwork, and walked out of there. I don't have any pictures of this, it was pretty stressful for almost an hour.
We decided to drop by and see our friends again because they really wanted to see Sadie, and I'm glad we did. She was so out that I handed her to Donna, who REALLY wanted to hold her, and she slept for almost 2 hours while we visited. She really needed that sleep...and who doesn't love to hold a sleeping baby? They're so cuddly. Sadie woke up when Donna handed her back to me, but she was still calm enough that we made it home without any screaming.
When we got home, she had a good meal and went right back to sleep, so I laid her down and we were able to eat in peace. I think I may have woken her up taking that picture, but she looked so precious, I couldn't help it.
We were told to try to call Dr. Jarrar's office by the end of the week for results. I'm not excited to hear from her what Sadie's brain looks like, so we may wait until we see the pediatrician next week, or we may cross our fingers that she's still on vacation and we can get results from a nurse. Either way, look for an update to hear how it looks. Hopefully better than when she was 1 week old!
Monday, July 19, 2010
Enter Dr. Underdahl. He walked in, started waving flashing lights in her face, turning the lights on and off, and Sadie was in awe. She even SMILED at him!! He walked in and was real gentle, called her punkin, and just loved on her a little. But, of course, by the time we left, she was sad again. The problem was that she REALLY needed to sleep!
So, this is what he said...Sadie is pretty impaired visually. She suffers from Cortical Vision Impairment (CVI) However, he DOES see progress from the last time he saw her, so that's good. And he thinks we'll continue to see progress, mostly in the next year. We know she sees, we're just not sure how well. She doesn't focus on something and stick with it, he says it may not be stimulating enough...because it's hard to see. When asked how this is going to effect her development, he couldn't tell me (nobody can ever answer that question! Yet, we still keep asking). He told me that in the next year, her vision will improve, but it's hard to say how much improvement until she gets to the point of needing to see to read, to walk, etc. I asked about the test they can do to see her brain and how much of what she's seeing is being translated by her brain and he told me that it'd do no good to do that test now because it'll be totally different in 6 months, and probably different again in 6 more months. I also asked about the strabismus (the lazy eye/cross-eyes) and he told me that since there's been so much improvement since the last time he saw us, he doesn't want to resort to patching yet, he thinks that in 6 months, when we see him again, it should be gone. She is doing most of her tracking right now with eyes together.
So for now, we just move on...and wait. We're doing a lot of waiting. For now, though my job is to call The Foundation for Blind Children and see what kind of resources and support they can give us for CVI. Then, we'll go back to see Dr. Underdahl sometime in January or February.
Sunday, July 18, 2010
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.
Thursday, July 15, 2010
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!
Wednesday, July 14, 2010
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.
Tuesday, July 13, 2010
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?
Jeremy, Anna's husband: I know buddy, it still freaks me out a little too.
Monday, July 12, 2010
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!!
Sunday, July 11, 2010
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.
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.