We are one month in. We made it! Halfway through. So, why do I feel like we should be finished already???
Dani and I went to her appointment today for a more involved visit than we normally have. Last week I had concerns about the DOC band not doing what it should be doing to her head. During her one hour off a day, I have noticed in the past few weeks that while her head is rounding out, it is rounding out on one side. And the side it's rounding out isn't even the flat side. See, one side is more flat than the other due to her plagio. The brachy causes her head to "drop off" creating a flat back, but the plagio means one side is essentially longer than the other out the back, creating an oblong shape when looking from the top of the head (I'll add pictures to point it out another day, but I really am just too tired to go to the scanner and get the pictures on a file I can insert here. My tired brain will have to guide you through!). Last week, Wendy, who we have seen more than the other OT/PT's, agreed with me that it seemed a bit misshapen and told me this weeks appointment would include pictures and measurements to see where we are in this process.
As usual, the pictures and measuring were torture for Dani. She was crying-actual tears- the whole time for some reason. These wonderful people had toys, music, lights... none of it mattered! Dani did not want to be held down for measurements. I felt terrible. Her skin is really sensitive so by the time it was over, her skin had red blotches everywhere she was held into place, or prodded with a measuring device. I snuck a glance at the numbers and it didn't seem there was much improvement. Sigh.
It turns out, her head circumference hasn't changed in 2 weeks, and the numbers suggest some improvement, but without a second band, I was told it would be a wait and see kind of thing. The band only has 2 more adjustments on it, and in 6 weeks she will grow out of it. In 6 weeks this will definitely be over, but if I don't see enough improvement in 4 weeks, I can make the decision to pull the plug on the whole thing. 8 weeks and $2,500 for nothing? I wanted to cry.
I'm not saying there has been NO change, because there has been! Her face looks thinner, and the left side of the back of her head is rounding out beautifully. But I don't want to make it worse! I don't want her to have a misshapen oblong head. Life is hard enough without making it worse. I guess I don't know what to do. I left the appointment feeling down. While nothing terrible was said, I felt like what they weren't telling me was the band is failing. I don't want to believe it. They notice changes in her head, but it is slow. So slow, we are going to appointments every 2 weeks now instead of once a week. After a baby turns 7 months, growth slows way down. We got it on her head at 6 months. I noticed this at 4 months. If we hadn't been in Mississippi with such an inept pediatrician, I feel like this would be a different story. I am so angry. SO angry. What do I do? Do I sue the pediatrician who told me everything was fine? Do I buy another band even though we absolutely cannot afford it, and hope it helps? Do I just give up in a month? I'm not one to give up. I never quit until I get what I want. It is my personality. I honestly don't know what to do right now.
I guess we will see what happens in a month. Maybe the story will be different. Maybe this will just be the low point in all of it and everything will be fine. Maybe it's time to pray harder.
I'm exhausted. It has just been so long since I have posted anything, and I needed at least a small update. It has been a jam packed month- I'm going to really try and get caught up soon. Pictures, stories, etc. All coming soon! With a better attitude and mood than this one! This one sucks. So, I'll take my sucky attitude and go to bed.
Monday, May 7, 2012
Monday, April 16, 2012
"Mommy, What's Wrong with That Baby?"
April 11, 2012
This week has been a trying week… our 13 hour plane ride
back to San Diego, Mondays DOC band fitting, getting documents, inspections and
various paperwork together for our home loan- I haven’t had one second to
myself. And Dani hasn’t had a lot of time to adjust to everything changing
around her. It is so fortunate she is as easygoing as she is, because I know I
could have it a lot worse. As of right now, she is sleeping for the first time
ever in her band. I put her down at 8, she woke up just after 9, and is asleep
again for now. I have a sinking feeling we are in for a long night. I don’t
blame her. The band sucks.
 | |
| The before shot. I think this really shows the flatness we're dealing with. |
To back up a bit, last Monday was really hard. We didn’t get
in the night before until almost 1 am Dani didn’t sleep at all that night, and
we had her fitting at 10 am. When we pulled up to the medical office, I had to
sit for a moment and cry. Cry for my daughter who had no idea the hell I was
about to put her through. Cry for me because I was embarking on 8-12 weeks of
deliberately putting my baby through hell. Cry for the fact that it was only
Monday and I was already tired, worn out and beaten down from the previous day.
I cried, I prayed, and then I got it together. I put my game face on and told
myself under no circumstances was Dani going to see me upset about any of this.
I was going to act as normal as possible.
Dani was a champ. All throughout the appointment, she was
happy and seemingly oblivious to the band. I nursed her to make sure I could do
it with the thing on her (spoiler alert: it’s awkward and hard) and the OT (a
new one this time- Mary) had us remove the band to check for red spots. The red
spots were supposed to fade in 30-45 minutes. When we initially took the band
off, the indents and red marks just broke my heart. This plastic contraption
was indenting my daughters beautiful skin! Mary was great. She taught me how to
do everything. She did everything from putting on and taking off the band,
adjusting it, taught me about cleaning it, prepared me for the stinkiness that
was inevitable… then Mary had me practice everything in front of her to make
sure I was doing it all correctly. Since the band is so dang expensive, I was
treating it like it was made of live ammunition. Mary put me at ease by taking
the band and handling it a bit more roughly to get me comfortable with the idea
of this stupid thing. She
explained to me that the band was going to hold pressure on the sides of her
head where her head has been growing so far, and that will take the growth out
the back, which is where it has needed to go all this time. So far her head has been top heavy, so the shape of the band has been custom made for the shape we are aiming for. As soon as the head can essentially fit the mold, we are done. Sounds simple, right? Right??
The first few days were challenging. Truth be told, it is
all very difficult. To see my little girl wrapped in this god awful piece of
plastic is killing me. She paws at it sometimes, not really understanding why
it seems to be there. I’m sure the pressure of the band is also making her
uncomfortable. Dani is doing the best she can. Thankfully, she is a happy baby with
her Daddy’s disposition, and not her mommy's. The tough part is nighttime. She sleeps in 1 hour to 2
hour chunks. Because of this, I am a walking zombie. Our schedule since moving
back to California has been hectic and crazy (and that is a massive understatement) so
everyday there is hardly time for a nap, let alone the 2 that she actually
needs. I try not to drink caffeine due to the fact I am still nursing her, but desperate times, man. Desperate times. Without coffee, without Starbucks, I think I would have killed us both in the car already. Then the band would have been for nothing.
The first time we went out in public, I got a lot of stares. A LOT of them. We were at Michaels to buy decorations and a little girl tugged at her mom asking "Mommy, what happened to that baby?" I was crushed. I understand since it's not something you see everyday. Her mom explained it was because of Dani's development in her brain. I quickly jumped in to educate both of them that this was not a brain thing. It is a shape thing. I am now starting it all out as a joke; "Well, I am too short to be pregnant!" But my bottom line is my daughter is NOT disabled. So don't treat her that way. Oh yeah, that has happened too.
April 16, 2012
I invite anyone to ask me about what is happening with Dani. Please ask me. Don't stare at me in pity, don't make assumptions, just ask! That's why I love kids. I just saw some friends over the weekend and one of them, Braedyn, straight up asked what was up with her helmet. I told him, he got it, case closed. It was great!
After a week of this, we have been twice to Cranial Technologies to get the band adjusted. It kept sitting over her eye, and smashing the other. Today at our weekly adjustment, Margie shaved off a good bit of the front, and now it fits really well. I'm hoping this will do the trick and Dani will even start sleeping better. She is napping right now as a matter of fact... I'm hoping I have time to do everything that needs to get done in the meantime. Did I also mention we are buying a house right now, and there's a ton of stuff to do??? I fall into bed every night exhausted, only to wake up every 1-2 hours for the duration. I can't wait until Dave gets to California. It'll be "his turn" for a month. Because that's how long I hope to be asleep.
Wednesday, April 4, 2012
Leaving the Sip
I thought leaving Mississippi was going to be awesome- packing up, saying goodbye, leaving with my family to go and unpause our life from where we left it in San Diego. With this situation looming over us, I am actually sad to be leaving Mississippi! What?? How did that just come out of my thoughts? Oh irony, I hate you sometimes!
Leaving Dave behind for the next seven weeks just (for lack of a better word) sucks. We have spent so much of our marriage so far apart. In the 36 months we have been married, we have been apart for 16 months and have 2 more ahead of us with this DOC band experience beginning next week. I just wish there was a way for Dave to go to his job and tell them we all had to leave together! I don't want to to this alone- I don't want to do this without my partner. I don't want to live away from Dave, back in with my parents for the next few months. I am so grateful for the fact that my parents are an option, and they are not only willing to take us in, but completely fine with it... but I also just want to be with my family! My daughter, my husband, my dog... I just can't wait to be settled. Lately I feel like a gypsy. Back and forth to California, living out of suitcases, constantly packing and unpacking, subjecting Dani to timezone changes- this will be the third time this month!! And Daylight Savings was in the mix too! We are so blessed to have such an easygoing baby. However, even the most easygoing baby can only take so much. Did I also mention with all of this, she is teething and going through a not so fun 6 month growth spurt? Oh, and I have to put a helmet on her Monday? I'm surprised my milk supply is still functional.
I have cleaned out two closets, a bookshelf full of clothes (we're living in a very cramped apartment), and my dresser. I have stacked my clothes, and separated goodwill out. I have lists taped to cabinets and the suitcases are out. Yet, I can't seem to put the items into the suitcases. I just don't want to do any of this!!
It's the fact that I don't know what to expect on Monday. Will she hate the band? Will she get sores on her head from the heat of the band? Will she be able to sleep? Will people stare and judge us? Will they treat my daughter differently? Speak to her differently? Will her usual happy nature become more reserved? Will she become insecure? Will she sense my worry and frustration? How will the car rides go? We have a Britax seat that aready holds her pretty tight without the extra room needed for the band. And most importantly, how long will this be our reality?
I can only pray that this is God's plan for some reason that I am unaware of. I want to be strong for my daughter, but I continue to cry everyday and convince myself she doesn't need the band. To just cancel everything. Dave brings me back into reality with it, but without him to do that, how will I do this? Can I do this? Is it possible to freak out about this any more than I am?
I need to just tattoo Jeremiah 29:11 on my forehead.
Leaving Dave behind for the next seven weeks just (for lack of a better word) sucks. We have spent so much of our marriage so far apart. In the 36 months we have been married, we have been apart for 16 months and have 2 more ahead of us with this DOC band experience beginning next week. I just wish there was a way for Dave to go to his job and tell them we all had to leave together! I don't want to to this alone- I don't want to do this without my partner. I don't want to live away from Dave, back in with my parents for the next few months. I am so grateful for the fact that my parents are an option, and they are not only willing to take us in, but completely fine with it... but I also just want to be with my family! My daughter, my husband, my dog... I just can't wait to be settled. Lately I feel like a gypsy. Back and forth to California, living out of suitcases, constantly packing and unpacking, subjecting Dani to timezone changes- this will be the third time this month!! And Daylight Savings was in the mix too! We are so blessed to have such an easygoing baby. However, even the most easygoing baby can only take so much. Did I also mention with all of this, she is teething and going through a not so fun 6 month growth spurt? Oh, and I have to put a helmet on her Monday? I'm surprised my milk supply is still functional.
I have cleaned out two closets, a bookshelf full of clothes (we're living in a very cramped apartment), and my dresser. I have stacked my clothes, and separated goodwill out. I have lists taped to cabinets and the suitcases are out. Yet, I can't seem to put the items into the suitcases. I just don't want to do any of this!!
It's the fact that I don't know what to expect on Monday. Will she hate the band? Will she get sores on her head from the heat of the band? Will she be able to sleep? Will people stare and judge us? Will they treat my daughter differently? Speak to her differently? Will her usual happy nature become more reserved? Will she become insecure? Will she sense my worry and frustration? How will the car rides go? We have a Britax seat that aready holds her pretty tight without the extra room needed for the band. And most importantly, how long will this be our reality?
I can only pray that this is God's plan for some reason that I am unaware of. I want to be strong for my daughter, but I continue to cry everyday and convince myself she doesn't need the band. To just cancel everything. Dave brings me back into reality with it, but without him to do that, how will I do this? Can I do this? Is it possible to freak out about this any more than I am?
I need to just tattoo Jeremiah 29:11 on my forehead.
Friday, March 30, 2012
DOC Band Visit #2
Even though this appointment was a week ago, I still feel the sting of putting Dani through this day. It's one of those times where you would do anything to go through it all for her. Anything.
We made an appointment for Dani to get started with the DOC band as soon as we could. Since we knew we were working against a clock, we want to get the thing on her as soon as possible! On our initial visit, Margie told us if we were to wait until we came back from Mississippi in June as planned, there would be a greater chance for Dani to have to get fitted for another band, and it would cost the same as the first band. Oh, and by the way, insurance doesn't cover it!!! How it's not covered is beyond me; I guess they must think it's a cosmetic issue (it's not)? But if that were the case, then boob jobs wouldn't be covered too right? Oh, but those puppies are covered!! I'll never understand the logic behind that one. Sigh.
Anyways, Cranial Tech was great in getting the process started right away. The first appointment (our second overall) would be the DSi appointment. Basically, this is the time to get exact measurements for Dani's head so the band could be custom made to her head. The process is so sophisticated- we were impressed! If I hadn't read up on the DSi appointment first, I would have been a mess. Well, more of a mess.
When we showed up for our appointment, we were once again whisked to our little room with the toys Dani likes. They asked us to dress her down to the diaper, and someone would be right in to get us for the next step. Dani loves to be as naked as possible, as you can see from her picture, so life was going pretty well at this point. The physical therapist then came in to get us for the next dreaded step. The pantyhose. This was the part I had been dreading the entire morning. I was nauseous. The idea of the pantyhose is to lay all her hair as flat as possible on her head to get the most precise measurement as humanly possible. To do this, the pantyhose had to go over her entire head like a bank robber. I knew this was going to piss Dani off. She doesn't even like wearing a hat- a hood; she merely tolerates bows. Angie (the physical therapist) let me know at that point that she had to hold her arms down as well during the picture taking, and I couldn't be apart of that. We could be in the room with her, but I couldn't be the one to help hold her arms down for the imaging. So she had to have her bank robber hose on, with a stranger, sitting on a stool surrounded by 25 3D cameras. Awesome. This should be great.
We walked into the big camera room, and I handed over my hoodlum looking baby girl to get her mug shot. As soon as she sat on the stool, the screaming began. It was torture. Between the strangers saying "Dani! Dani! Look up here!", another woman holding her arms down, the Baby Einsteins video in the background, and the PANTYHOSE over her head, it was just too much for her. And me. I had to excuse myself from the room. As I tried to collect myself, one of the women came out to the front and I heard her ask the front desk receptionist for an assist (this was the woman who told me babies were just fine through this process. Liar.).
I walked back in with them telling myself Dani needed my strength to get through the rest of this. Dave was sitting in one of the two chairs available to us. He was in stoic mode, so I knew his heart was breaking like mine. I thought for sure I wouldn't cry. But, I am a mess when it comes to our baby. I was so mad at myself for not just staying in the room! How could I leave? What was I thinking? My daughter needed me and I bailed? I promised right then and there, no more tears. No more weakness. I can do this for her. I can and I will.
A few minutes later, it was all over. I scooped her up in my arms, and walked into our little room with the toys... and a boppy! Thank you Lord for the boppy! We sat down and I immediately started to nurse her. After the choking combination of sobs, heaves and sucking, I was able to calm her down enough to let her nurse. After awhile, she was back to "happy baby."
Angie walked in to show us the 3D imaging that was taken. It was amazing. The 360 degree full rotation on her entire head was great. She showed us what they were looking for, how it would be fixed, the parts that needed to grow, and the other sections that needed to stay where they were. We were shown the pictures with a red contrast around her head to highlight the plagio. I thought she had mostly brachy at this point until the red contrast. This showed us it was a true combination of both. I was so thankful seeing these pictures that we were doing what we were doing. I know it will be extremely difficult, but we can handle it. I can handle anything for Dani girl. God has given me the strength to help Dani through this. With His help, we will get through this and soon it will all be a memory. I just can't wait for the part where it's a memory. :-)
We made an appointment for Dani to get started with the DOC band as soon as we could. Since we knew we were working against a clock, we want to get the thing on her as soon as possible! On our initial visit, Margie told us if we were to wait until we came back from Mississippi in June as planned, there would be a greater chance for Dani to have to get fitted for another band, and it would cost the same as the first band. Oh, and by the way, insurance doesn't cover it!!! How it's not covered is beyond me; I guess they must think it's a cosmetic issue (it's not)? But if that were the case, then boob jobs wouldn't be covered too right? Oh, but those puppies are covered!! I'll never understand the logic behind that one. Sigh.
Anyways, Cranial Tech was great in getting the process started right away. The first appointment (our second overall) would be the DSi appointment. Basically, this is the time to get exact measurements for Dani's head so the band could be custom made to her head. The process is so sophisticated- we were impressed! If I hadn't read up on the DSi appointment first, I would have been a mess. Well, more of a mess.
When we showed up for our appointment, we were once again whisked to our little room with the toys Dani likes. They asked us to dress her down to the diaper, and someone would be right in to get us for the next step. Dani loves to be as naked as possible, as you can see from her picture, so life was going pretty well at this point. The physical therapist then came in to get us for the next dreaded step. The pantyhose. This was the part I had been dreading the entire morning. I was nauseous. The idea of the pantyhose is to lay all her hair as flat as possible on her head to get the most precise measurement as humanly possible. To do this, the pantyhose had to go over her entire head like a bank robber. I knew this was going to piss Dani off. She doesn't even like wearing a hat- a hood; she merely tolerates bows. Angie (the physical therapist) let me know at that point that she had to hold her arms down as well during the picture taking, and I couldn't be apart of that. We could be in the room with her, but I couldn't be the one to help hold her arms down for the imaging. So she had to have her bank robber hose on, with a stranger, sitting on a stool surrounded by 25 3D cameras. Awesome. This should be great.
We walked into the big camera room, and I handed over my hoodlum looking baby girl to get her mug shot. As soon as she sat on the stool, the screaming began. It was torture. Between the strangers saying "Dani! Dani! Look up here!", another woman holding her arms down, the Baby Einsteins video in the background, and the PANTYHOSE over her head, it was just too much for her. And me. I had to excuse myself from the room. As I tried to collect myself, one of the women came out to the front and I heard her ask the front desk receptionist for an assist (this was the woman who told me babies were just fine through this process. Liar.).
I walked back in with them telling myself Dani needed my strength to get through the rest of this. Dave was sitting in one of the two chairs available to us. He was in stoic mode, so I knew his heart was breaking like mine. I thought for sure I wouldn't cry. But, I am a mess when it comes to our baby. I was so mad at myself for not just staying in the room! How could I leave? What was I thinking? My daughter needed me and I bailed? I promised right then and there, no more tears. No more weakness. I can do this for her. I can and I will.
A few minutes later, it was all over. I scooped her up in my arms, and walked into our little room with the toys... and a boppy! Thank you Lord for the boppy! We sat down and I immediately started to nurse her. After the choking combination of sobs, heaves and sucking, I was able to calm her down enough to let her nurse. After awhile, she was back to "happy baby."
Angie walked in to show us the 3D imaging that was taken. It was amazing. The 360 degree full rotation on her entire head was great. She showed us what they were looking for, how it would be fixed, the parts that needed to grow, and the other sections that needed to stay where they were. We were shown the pictures with a red contrast around her head to highlight the plagio. I thought she had mostly brachy at this point until the red contrast. This showed us it was a true combination of both. I was so thankful seeing these pictures that we were doing what we were doing. I know it will be extremely difficult, but we can handle it. I can handle anything for Dani girl. God has given me the strength to help Dani through this. With His help, we will get through this and soon it will all be a memory. I just can't wait for the part where it's a memory. :-)
Thursday, March 29, 2012
I guess I'm a blogger??
Six months ago, the greatest thing happened to me and Dave. We became parents after trying for 2 years. I gave birth to a healthy beautiful baby girl, Danielle Heather. The past six months have been the best and most rewarding of my life. I feel as if I was made specifically to be Dani's mother. What a wonderful gift to be a mom! And at the same time, a terrifying ordeal. Um, who said it was okay for me- ME- to be in charge of such a little person? How is it my decision, all the time? What if I make the wrong one? How am I going to screw her up? How have I already screwed her up? I'm definitely screwed up, so clearly, I'm not the best candidate to be Dani's mom, right? My mom is pretty good at being a mom- maybe I should let her do it?
No, I am her mother. I make the decisions. I can and will have her best interest at heart, always. I will always be her advocate, her protector, her mama bear. If anyone should hurt her, I will scratch their eyes right out without blinking. Because it's my job. The only job that will ever really matter. Like any job, I have to learn this one, and in doing so I will undoubtedly make a ton of mistakes. I already have! I am imperfect, but my family is perfect. So, that makes us imperfectly imperfect! Thus the name of this blog...
I decided to begin a blog to record what happens here in our world when I realized the strangest things seem to unfold around here. My perfect daughter, who came out a perfect 7 pounds 2 ounces, with her beautiful little face, ten toes, ten fingers, and a smile that would make Hitler cry, needs a helmet. A helmet. A friggin helmet! The actual term is a DOC band actually. I can say DOC band until the cows come home, but in my head all that reverberates over and over again is "helmet, helmet, your kid is a helmet kid." I know it's not a full helmet- it's a band. It looks like a boxing helmet actually. Helmet- there's that word again! Maybe I should back up...
When Dani was 2 months old, our pediatrician mentioned Dani's head was a bit flat. I had noticed this as well, but I was under the impression all newborns had odd-shaped heads, and it would even out eventually as their heads are so soft and mold-able. This was around the time we moved back to Mississippi from our home in San Diego. Dave has been stationed in Mississippi for almost three years now, however when he deployed last year, I went home to San Diego to have Dani with family around. Dave returned from deployment about seven weeks after Dani was born. But I digress. When we got to Mississippi, I began seeing a Pediatrician locally. This office was never a place I liked to go, and I hated this was the place I had to take my brand new baby daughter. It was a bad experience from the first phone call to make the first appointment. What made matters worse, this office assigned us a Nurse Practitioner, instead of an actual doctor. While she is a very nice woman, she has never been helpful. This little tidbit was proved with about half a dozen appointments of me taking Dani in and asking over and over about her head.
"I think it's still too flat- it doesn't seem to be flattening out!"
"No, her head is fine. She won't need to see a specialist."
"I know you're sick of seeing me, but I just feel like her head is much too flat!"
"Nope. Ship shape!"
Over and over again, I went in there like an insane woman trying to get what I knew to be right looked at, validated, diagnosed. I was always shot down, walking away thinking this NP must know what she is talking about, she went to medical school, I'm just a neurotic first time mom, right?
Dave, Dani and I found out we would be returning to San Diego in June of this year (finally) and came home for a two week trip to look at houses. During this trip, I made an appointment for Dani at our old Pediatrician for a second opinion to see if I really was crazy. She's five months old at this point, maybe her head has grown into a shape that I can't see. Turns out, I WAS right. I was right all this time! We were immediately referred to Cranial Technologies in San Diego, and made an appointment with them as soon as we could. Since we were in town for just a few weeks, we got right in- on our wedding anniversary! A family trip to the cranial specialist. Okay, I guess this is actually happening!
Cranial Technologies was so welcoming. We didn't have to wait long in the waiting room and everyone was so nice. Someone whisked us into a room where Dani had a series of digital pictures taken. As the woman took the pictures, she put every light up musical toy in the world in front of Dani to distract her into looking right into the camera, at a wall, at the ceiling, etc. This took about 5 minutes. We were then led to another room to wait for the Physical Therapist/Occupational Therapist to tell us what they thought of her head. Dani loved to play with the new toys that were in this room. It felt nice to have an environment that didn't feel sterile.
The PT, Margie, came in to speak with the three of us. We went over the pictures and were told Dani had a combination of Plagiocephaly and Brachycephaly. Um, what? Are those words? Even as I type them, my Mac is asking me to please fix the spelling of such an absurd pair of words. Ok, well, what does this all mean? What it means is that in Dani's case, her poor little head was wedged in my pelvis for so long while I was pregnant, her head kind of grew... smooshed. Because I dropped so early, and more than once, when I was pregnant Dani's head kind of never had a chance, and was always going to need the band to help shape it correctly. The plagio (because I am never typing all that out again) is where her head kind of bulges out of one side more than the other, and in Dani's case, it bulges out the left back side and the front right side. The brachy (again, never again!) is where her head does a sort of "drop off" the back. And is flat flat flat. because of this phenomenon, her head has been growing "out" the sides. It got very technical, but with the pictures, we were really able to understand what was being explained to us. They answered my many questions, and I felt thoroughly educated about Dani's head.
I also felt thoroughly guilty. Me and my short frame- no torso to hold a baby, so her head had to develop in my pelvis. My small, short body pelvis. Margie told us her head was a result of "in utero" instead of the very prevalent "positional" plagio/brachy. She also said because we did so much tummy time to try and correct her head, it's not nearly as bad as it could have been. I think this was supposed to make us feel better. I'm not sure it did. Neither did telling us how hard she has had to work at keeping her head up. Because her head hasn't had the chance to grow out the back, and create a more balanced head to learn to control, Dani has had to work so much harder than the average baby to learn this task. The weight of her head has never been distributed properly, and because of this, tummy time really did totally suck. All I could think about was the may hours we would keep her on her tummy thinking we were doing the right thing, and how upset she was the entire time. I knew babies in general hated tummy time and protested, but looking back, were we being cruel? Was I torturing my perfect baby? I felt like a failure. I felt so awful for inflicting me on my poor unsuspecting daughter who drew me as her mother.
Then I thought, wait a minute. My daughter might have had to work harder, but it makes her tough! It makes her a fighter, someone who can achieve a difficult task put forth to her. That makes her my daughter, as I have always been a tough one as well. She got that strength from me! At six months old, my daughter taught me she can achieve anything she sets her mind to. Because let me tell you, she can hold her head up just fine! She has great gross motor skills, and as she fine tunes the fine motor skills, I am constantly amazed as how quickly she picks up a new achievement. This might be because it seems easy after working so hard to keep her head up. I'll take that any day of the week!!
No, I am her mother. I make the decisions. I can and will have her best interest at heart, always. I will always be her advocate, her protector, her mama bear. If anyone should hurt her, I will scratch their eyes right out without blinking. Because it's my job. The only job that will ever really matter. Like any job, I have to learn this one, and in doing so I will undoubtedly make a ton of mistakes. I already have! I am imperfect, but my family is perfect. So, that makes us imperfectly imperfect! Thus the name of this blog...
I decided to begin a blog to record what happens here in our world when I realized the strangest things seem to unfold around here. My perfect daughter, who came out a perfect 7 pounds 2 ounces, with her beautiful little face, ten toes, ten fingers, and a smile that would make Hitler cry, needs a helmet. A helmet. A friggin helmet! The actual term is a DOC band actually. I can say DOC band until the cows come home, but in my head all that reverberates over and over again is "helmet, helmet, your kid is a helmet kid." I know it's not a full helmet- it's a band. It looks like a boxing helmet actually. Helmet- there's that word again! Maybe I should back up...
When Dani was 2 months old, our pediatrician mentioned Dani's head was a bit flat. I had noticed this as well, but I was under the impression all newborns had odd-shaped heads, and it would even out eventually as their heads are so soft and mold-able. This was around the time we moved back to Mississippi from our home in San Diego. Dave has been stationed in Mississippi for almost three years now, however when he deployed last year, I went home to San Diego to have Dani with family around. Dave returned from deployment about seven weeks after Dani was born. But I digress. When we got to Mississippi, I began seeing a Pediatrician locally. This office was never a place I liked to go, and I hated this was the place I had to take my brand new baby daughter. It was a bad experience from the first phone call to make the first appointment. What made matters worse, this office assigned us a Nurse Practitioner, instead of an actual doctor. While she is a very nice woman, she has never been helpful. This little tidbit was proved with about half a dozen appointments of me taking Dani in and asking over and over about her head.
"I think it's still too flat- it doesn't seem to be flattening out!"
"No, her head is fine. She won't need to see a specialist."
"I know you're sick of seeing me, but I just feel like her head is much too flat!"
"Nope. Ship shape!"
Over and over again, I went in there like an insane woman trying to get what I knew to be right looked at, validated, diagnosed. I was always shot down, walking away thinking this NP must know what she is talking about, she went to medical school, I'm just a neurotic first time mom, right?
Dave, Dani and I found out we would be returning to San Diego in June of this year (finally) and came home for a two week trip to look at houses. During this trip, I made an appointment for Dani at our old Pediatrician for a second opinion to see if I really was crazy. She's five months old at this point, maybe her head has grown into a shape that I can't see. Turns out, I WAS right. I was right all this time! We were immediately referred to Cranial Technologies in San Diego, and made an appointment with them as soon as we could. Since we were in town for just a few weeks, we got right in- on our wedding anniversary! A family trip to the cranial specialist. Okay, I guess this is actually happening!
Cranial Technologies was so welcoming. We didn't have to wait long in the waiting room and everyone was so nice. Someone whisked us into a room where Dani had a series of digital pictures taken. As the woman took the pictures, she put every light up musical toy in the world in front of Dani to distract her into looking right into the camera, at a wall, at the ceiling, etc. This took about 5 minutes. We were then led to another room to wait for the Physical Therapist/Occupational Therapist to tell us what they thought of her head. Dani loved to play with the new toys that were in this room. It felt nice to have an environment that didn't feel sterile.
The PT, Margie, came in to speak with the three of us. We went over the pictures and were told Dani had a combination of Plagiocephaly and Brachycephaly. Um, what? Are those words? Even as I type them, my Mac is asking me to please fix the spelling of such an absurd pair of words. Ok, well, what does this all mean? What it means is that in Dani's case, her poor little head was wedged in my pelvis for so long while I was pregnant, her head kind of grew... smooshed. Because I dropped so early, and more than once, when I was pregnant Dani's head kind of never had a chance, and was always going to need the band to help shape it correctly. The plagio (because I am never typing all that out again) is where her head kind of bulges out of one side more than the other, and in Dani's case, it bulges out the left back side and the front right side. The brachy (again, never again!) is where her head does a sort of "drop off" the back. And is flat flat flat. because of this phenomenon, her head has been growing "out" the sides. It got very technical, but with the pictures, we were really able to understand what was being explained to us. They answered my many questions, and I felt thoroughly educated about Dani's head.
I also felt thoroughly guilty. Me and my short frame- no torso to hold a baby, so her head had to develop in my pelvis. My small, short body pelvis. Margie told us her head was a result of "in utero" instead of the very prevalent "positional" plagio/brachy. She also said because we did so much tummy time to try and correct her head, it's not nearly as bad as it could have been. I think this was supposed to make us feel better. I'm not sure it did. Neither did telling us how hard she has had to work at keeping her head up. Because her head hasn't had the chance to grow out the back, and create a more balanced head to learn to control, Dani has had to work so much harder than the average baby to learn this task. The weight of her head has never been distributed properly, and because of this, tummy time really did totally suck. All I could think about was the may hours we would keep her on her tummy thinking we were doing the right thing, and how upset she was the entire time. I knew babies in general hated tummy time and protested, but looking back, were we being cruel? Was I torturing my perfect baby? I felt like a failure. I felt so awful for inflicting me on my poor unsuspecting daughter who drew me as her mother.
Then I thought, wait a minute. My daughter might have had to work harder, but it makes her tough! It makes her a fighter, someone who can achieve a difficult task put forth to her. That makes her my daughter, as I have always been a tough one as well. She got that strength from me! At six months old, my daughter taught me she can achieve anything she sets her mind to. Because let me tell you, she can hold her head up just fine! She has great gross motor skills, and as she fine tunes the fine motor skills, I am constantly amazed as how quickly she picks up a new achievement. This might be because it seems easy after working so hard to keep her head up. I'll take that any day of the week!!
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