Monday, August 30, 2010

Miracles in Motion


Saturday night Brian and I did something we've only done twice since Sadie was born...we went out as adults, without Sadie. In fact, Saturday night we attended the kick-off party for Miracles in Motion.

Miracles in Motion is the name of the fundraiser I have joined up with to raise money for Phoenix Children's Hospital. I am training to run a half marathon (13.1 miles) in January, in fact 3 days before Sadie's first birthday...which is part of what makes this event so special. Saturday night we learned a lot about the Children's Hospital's financial needs and why it is so important that we raise this money (aside from the obvious emotional connection we have to this hospital, who we believe saved Sadie's life).

* Phoenix Children's Hospital was started in 1983 and is now one of the 10 largest children's hospitals in the country.

*Phoenix Children's Hospital has Centers of Excellence in Noenatology, Hematology/oncology, Neurosciences, Cardiac services, Orthopaedics, and Level 1 trauma. They also offer world-class care in 40 sub-specialty fields.

*Phoenix is the nation's 5th largest city and continues to grow. Phoenix Children's Hospital, in preparation for the 1.5 million children estimated to live here by 2030 is building a $588 million expansion.

*This new expansion is in the form of an 11-story tower including private ICU rooms, 12 additional operating rooms, 1500 new parking spaces, 626 more beds, 520 beds in private rooms for children and their families.

* Phoenix Children's Hospital is Arizona's ONLY licensed children's hospital.

*The Bill Holt Clinic at Phoenix Children's Hospital currently serves about 270 children living with HIV.

* More than 550 pediatric heart surgeries took place in 2007.

So, as you can see, Phoenix Children's Hospital is doing great things for children in not just the Phoenix area, but in surrounding areas as well. When we were in the NICU, we heard they were flying in a baby from Las Vegas! I also know that there are many families that come from Flagstaff, Prescott, and various other cities in Arizona. Brian and I discussed the expansion, and while it's great that they are expanding, we found it a little sad as well that it's needed. But we know they are helping a lot of children, and we also know how nice it'll be for families to have private rooms.

Please support me in my efforts to not only run a half marathon, but to raise money for this hospital. They saved Sadie's life by using cutting edge technology, they've declared Sadie seizure free through their epilepsy monitoring unit, we see our pediatrician there, we go there for tests, it is a very important place for us. Any amount will be appreciated.

Thanks

Sunday, August 29, 2010

The Second (banana) Sex

I Recently finished a seminal work in second wave feminism. As I flipped through the final pages I thought that the thesis will be imperative for my daughter.

Simone De Beauvoir came after suffrage and before feminist tension found a nadir of absurdity though infighting and nonsensical demands of society. She grew up in France and received the highest academic honors throughout her matriculation. She eventually met up with J.P. Sartre and continued a lifelong friendship where influence rubbed off upon one another.

The thrust of her book is that woman is not born, but is made. A woman physically is born as is, however her place in society is created through domination of the male human species. She traces the broad scope of history to try to understand why woman has become a objective instrument to maleness. She discovers no clear reason other than the fact that woman has succumbed to this forceful demand - creating, accepting and even craving this objectified status in society - and man has accepted this as a status-quo.

Her cure, which in modern times seems rather simple and foregone, is to treat woman as an other (not an it) and allow a woman to redefine herself as a human equal amongst a plethora of individuals. There can be no denial that there are certain physiological differences between males and females, however that difference should be used to enhance one another.

The brief synopsis above is a quick and not-very-useful attempt to bring my thesis into light. My daughter, in all her womany being, has an added element which creates another level of objectivity. She has a disability, severity unknown, that makes her dependent upon others for an indeterminate future.

It is very tempting for us her parents, and anyone involved in her life to quickly label, define and categorize her as an individual who has limits, hindrances, inability to do whatever it is she wants to do. The assumptions we carry with us, whether it be towards women, a race, political affiliations, or even people with disabilities is unfair and takes the humanness away from another.

I think we're in for a lot of learning and new beginnings.


Thursday, August 26, 2010

A Helping Hand

If you remember, I started the Couch to 5K program back in April? May? I can't remember. Anyway, it all went south when we encountered sleeping problems. You see, where we live it's not uncommon for the temperature in the summer to be well over 100 degrees. Often it's over 110. So, for me to go running it had to be EARLY in the morning when the weather is coolest. And even then it was still in the 80s, that's just about as cool as we get...if we're lucky. So, as you can imagine, if I'd be up with an awake baby for 3 hours in the night and was just thinking about getting back to bed at 4:30 (or sometimes 6:00) there was no possible way I could have gone running at 5:30!

Excuses, excuses, I know. And I'd even bought a fancy new pair of running shoes.

Well recently I've upped the ante. I'm not only shooting for 5K, or even 10K, now I'm looking to run a half marathon. Why? you ask. Because it's for a good cause.

When Sadie was born, she spent her first week of life at the Phoenix Children's Hospital (PCH) in the NICU. We were blessed by this hospital and their staff, and we continue to conduct Sadie's business there. We even drove the extra distance to PCH when Sadie had her overdose (for which we've decided to sue, by the way) because I knew they'd have the best care for a baby, and because I knew they'd be able to find all our information without me having to explain everything. They are so great there. In fact, there are no words to express how great they are.

PCH gives hope where there is none.

PCH works miracles in the lives of children, the faces of our future.

PCH save families.

PCH cares about every little toe and finger of every child in their care.

PCH strives to give the best even to those who can't afford the best.

PCH understands how hard parents work to give their children the best.

PCH goes out of their way to make you feel at home, when they know you are so far from it.

PCH wants to make you smile, even in crisis.

PCH gives hugs for free.

Do I need to go on? I feel like I could do this for pages and pages!

So, here's the deal. Every January Phoenix hosts the PF Chang's Rock 'n Roll Marathon. And PCH takes this opportunity to fundraise. I have teamed up with PCH and committed to raising $1500, as well as to run a half marathon on January 16 (3 days before Sadie's first birthday). It's the perfect combination of celebrating Sadie's life as well as giving back to those who allowed her to experience life. But it's going to be a lot of hard work for me. However, as we come down off the hot weather, and as we seem to be getting better at sleeping, I have plain run out of excuses so I'd better get my butt in gear.

All the while, I'd like to ask you for help as well! First of all, pray for me. I know many of you already pray for Sadie, possibly our family, so I'd ask that you add my physical health and motivation to your list. Second, I'd really appreciate it if you'd consider donating to PCH on my behalf, on Sadie's behalf. I've committed to raising $1500 by November 16, and personally, I think I can raise twice as much!! So, please help me reach my goal. Show your appreciation for what they've done for Sadie and what they're doing for hundreds, thousands of other children.

You can click on the button below and it'll take you to my fundraising page where it's safe and secure to give. Give anonymously or put in your name, it doesn't matter, it's not about showing off. But please, support us in any way you can.

Wednesday, August 25, 2010

What is Cerebral Palsy?

Since we've been diagnosed (officially) with Cerebral Palsy (CP), a lot of people have asked me what that means exactly. So, I thought (since I'm a teacher at heart) that I'd give a little seminar-post about CP to hopefully answer some of the bigger, more common questions.

CP is a condition that effects the brain and nervous system and can cause many different symptoms ranging from extremely mild to extremely severe. There are different kinds of CP: spastic, dyskinetic, ataxic, hypotonic, and mixed. We believe Sadie is spastic. This means that her muscles are very tight (although this isn't a constant thing with her, she is loose when at rest), her joints do not open up all the way (mainly her hips), and she tends to tuck her arms in, point her toes, and squeeze her legs together. However, she also shows signs of other types of CP, for example she tends to have abnormal movements and tremors, particularly during times of stress.

The majority of children with CP are born with it (even though it may not be detected until months later), but the good news is that it never gets worse. CP doesn't always cause severe disabilities, I'm sure most of you have seen a severe case of a person who is in a wheelchair, can't communicate or manage their bowels, and may not be able to eat, however, we believe (based on what we already see) that Sadie will never be this severe. And with lots of prayer and therapy, we also believe that Sadie will grow up to live a near normal adult life. Studies show that the sooner CP is detected and treated, the better chance the child has of overcoming and adapting to disabilities. Unfortunately there is no cure for CP, only treatment.

Many individuals with CP have normal or above average intelligence (our little genius), but may have trouble expressing their intelligence because of lack of muscle coordination in the face or other parts of the body. It is common for children with CP to make great strides in ability through therapies. We have already seen Sadie come a long ways. She can breastfeed, her seizures have subsided, she has even eaten solid foods somewhat successfully. She can roll over (although she doesn't do it often), bat at her toys, and almost sit unassisted. To you these may not be a big deal because your infant does them early and automatically, but to us these are HUGE gains.

What caused this to happen to Sadie? Well, there are a couple of different theories, but nothing is really known for sure. First we thought she aspirated the meconium and suffered damage due to lack of oxygen (Hypoxic Ischemic Encephalopathy, or HIE). Then it was discovered that Sadie's placenta and umbilical cord was infected with Group B Strep, so we conjectured that she was sick before she was born, which caused her to pass the meconium and aspirate it. But then we were told she never really aspirated the meconium, and even though the infection was in there with her, she was never infected. Now the thought is that the toxins from the infection actually crossed the blood-brain barrier and caused some damage. They think there was also some HIE, because she has shown improvement since her brain cooling, but the brain cooling wouldn't have helped the damage from the Group B Strep, so that is why she's not doing as well as most HIE/brain-cooled kids. And that is the conclusion we have come to for now.

Sadie's visual impairment is also related to her CP. Many people with CP have what's called strabissmus, or a lazy eye. Sadie does have this, but she also has Cortical Visual Impairment (CVI), which is lack of development in the occipital lobe of her brain, where her vision is interpreted. As with CP, this will not get worse. In fact, we've been told her vision will continue to improve, making the most gains before she is 2 years old. As her brain is stimulated through therapies, treatments, and exercises, her brain will grow, and hopefully so will her vision.

All of this to say we don't know what Sadie will be able to do and not do. Being so young and not really having a lot expected of her yet makes it hard to tell. She seems to be doing extremely well, but we tend to see the situation with rose-colored glasses...and having no previous experience with a child with CP, I'm not sure our judgment is accurate. Yes, she's delayed, but there is A LOT she seems to be able to do, and she doesn't seem that far behind (yet). We just keep working at it, doing our best with her, giving her the best care and therapy and treatment, and we hope that it all helps.

If you want to read some more about CP, here are some good websites to check out.
emedicine health
kidshealth
United Cerebral Palsy
National Institute of Neurological Disorders
Google Health

Tuesday, August 24, 2010

The Wellness Center

A while back my dad forwarded me an email from a friend of his who is a chiropractor and really into homeopathic/naturopathic medicine. Among other things, he mentioned that we should find a "Brimhall" chiropractor. I didn't know what this meant, so I googled it (like any curious person of my generation would do) and found out that Dr. Brimhall is a chiropractor who does all sorts of crazy stuff like aura cleansing and chi rebalancing, as well as your basic chiropractic stuff. He travels around and certifies other chiropractors in his methods around the country. But then I learned that his son, who is following in his footsteps, has a wellness center and practices right here, in Mesa. Well, that's exciting!!

So, last week we scheduled an appointment to go see Dr. Brimhall (Jr.) and found some successes. Before my appointment, I filled out all the paperwork online so he knew what the deal was when we got there. We talked a little more about Sadie's birth and what has happened since. I told him we're seizure free, but that we're now on a muscle relaxer for her tightness. I told him how we're worried about her head growth and that she's WAY behind in her development. I told him how she doesn't sleep and she screams in the car and that I'd really like his help in developing her sensory system so that we can overcome these things. And secondly, I like him to address her tone (muscle tightness) in hopes that we don't have to be on that medicine long term. It was a lot, but he's a professional, he has kids, this isn't his first patient with CP, oh...and he's a SUPER nice guy!

The first thing he did was take this laser and point it on the back of her head (where it's not growing), this is to promote cell and tissue growth way deep in her brain. Then he took this vibrator thing and vibrated all over Sadie's body (I think it's called a percussor), it really loosened her up and relaxed her muscles. It also made her more active. He mentioned that it might make her really tired because it was stimulating her nervous system, I HOPED she'd be tired, because at that point, it'd been a week and a half since she'd taken a nap (without drugs)!! Then he stuck his hand in her mouth, while the other hand was at the base of her neck. When I asked him what he was doing, he said there's a pressure point on the roof of your mouth that opens the bones in your skull and allows the cranium to be receptive to stimulation. Cool huh? When he was done, we talked about making sure I was taking Omega 3 supplements because she really needs that fatty acid to help her brain heal and grow. We scheduled an appointment for a week later and we went on our way.

I'll admit I was initially a little disappointed when Sadie immediately started screaming in the car again. For some reason I had this magical idea that we'd see this guy and he'd make all my dreams come true...which all have to do with eliminating car screaming! But we only went as far as Tanis's house (which was like 3 miles), so it was okay. And when we got there Sadie TOOK A NAP!!! And when we got home, SHE TOOK ANOTHER NAP!!! It was unbelievable.

Dr. Brimhall mentioned that we'd probably see immediate results because she's a baby, but that they'd wear off. So, I figured after a couple days his magic powers had worn off and didn't really think anything of it. We had a good week this week: Sadie slept 6-8 hours at a time, twice in her own bed. Sadie started batting at her toys hanging from the toy bar a lot more. She's been slowly losing that ATNR reflex. And she's been napping. We went to California this weekend and Sadie did really well (LOVED that king size bed, by the way)...but Sunday afternoon it all started going down hill. And Monday she didn't nap and had a hard time going to sleep. But Tuesday (today) we went to see Dr. Brimhall again.

Sadie was a little more disagreeable this time when we saw him, but it's okay, because what he does tends to calm her down some. We talked and I told him about how she's been batting at toys and even grabbed one from Brian once and he got SO EXCITED. He was like, "that's HUGE!" I didn't really think about it being a result of what he had done to her, but he did. And he said he noticed she was tracking him more with her eyes today, that she was turning to the sound of his voice. And he mentioned that when the brain starts healing/developing, eyesight is the first thing you'll see improve. He said that last week he was worried because she didn't seem to have any reaction to him, but that today he could really see improvement and that gave him a lot of hope. He told me that he can't say HOW much she'll improve as a result of treatments, but that he's sure it'll be significant...even if slow.

I also told him how I felt like it all went south about Sunday afternoon. So, we agreed that we have about a 4-5 day window. He said ideally he'd like to re-treat her within that window of opportunity, not giving it time to wear completely off. So, we're going to go see him twice a week for the next 4 weeks. Hopefully by then she can go longer and we can spread it out to an entire week before our next visit. He told me he's going to focus on her sensory processing system first and try to get her sleeping longer and in more normal patterns, and with that the car screaming should mellow out as her system regulates. I told him I want the car screaming to stop more than I've ever wanted ANYTHING in my entire life. He said if we don't see pretty immediate results we'll do some electrical stimulation to try to tone down that sensitivity and help regulate her sleeping patterns so she'll nap and stuff. Then secondly we'll work on tone and try to get her to relax, but one thing I've noticed that helps a lot with her tightness is when she's well rested, she relaxes, and then she's not so tight. He also said to keep an eye on her head size, because as we continue treatments, we will see her brain grow and her head will grow as a result. (I have this wonderful fantasy of going to see Dr. Wendy one time and measuring her head to find that it's in the 25th percentile and us doing the dance of joy together...because she's THAT awesome of a pediatrician)

Sadie is going to see an orthopedist next week because her left hip is somewhat concerning. Because she keeps her legs so tight and close together, her hip socket isn't developing properly and she's losing range of motion. They want to inject the inside of her hip with some medicine that will interrupt the communication of the tendon with the muscle and allow that muscle to relax and keep her from pulling her him in so often. This is something that would last for 4-6 months and would hopefully give her hip some time to develop correctly. The next option is surgery, which is scary and sad and I hope this doesn't effect her ability to walk. So, I asked Dr. Brimhall about this situation and if he could help. He said to go ahead and see the orthopedist and get the process going, because reality is that she MAY need surgery eventually. But he was a little more hesitant about the injection and asked me to wait on that to see if we could loosen her up naturally before we resorted to that. We'll see.

So, today as we were leaving the wellness center, Sadie again screamed in the car (still no magic insta-cure for this), but again, we were only going as far as Tanis's (since she lives so close, and we're already 40 minutes from home, we're going to go visit her everytime we see Dr. Brimhall). Only, this time, she didn't sleep. Not until we got home 3 hours later. Now, mind you, she hasn't taken a nap since Sunday. And when Sadie naps it's nursing and in my arms for 45-90 minutes. I can't set her down. Today she bounced to sleep, then when I picked her up, she fell back asleep in my arms without nursing. Then I was able to lay her in her crib. And overall she slept for 2 hours!! This is somewhat of a miracle. I have ONLY been able to actually lay her in her crib for a nap when she's on drugs that make her sleep.

I'll give Dr. Brimhall another 4 weeks (which isn't cheap since they don't take insurance!) and see what kind of miracles he can work with his magic laser and his "human jackhammer". Who knows, maybe we'll have a completely different baby in 4 weeks, maybe we won't. I'm willing to try anything...especially if it doesn't involve drugs.

Monday, August 23, 2010

The thing is...

There's a blog I read frequently, mostly because it makes me laugh (sometimes until I cry, you can ask Brian, but I dare you to read THIS without belly laughing.), but also because this woman has a great sense of humor in the face of special needs. (this is her picture to the left) Her youngest boy has autism, her oldest twins spent some time in the NICU, and the kid in the middle has such severe digestion issues that she has to start school at home because she can't go to the bathroom. Yet, in the midst of it all, this woman can find humor.

The thing is, sometimes I read her posts and I totally get it. Especially this one.

Recently I've found myself doing this exact thing. I had a friend not too long ago mention that a group of us should get together on a regular basis, kids in tow. I felt so bad, but I was like, "the thing is..." then what sounds like excuses to not see my friends come spewing forth: Sadie screams in the car, we have to do medicine at 6:30, if her routine is messed up in the evening she won't go to sleep, etc etc etc... Believe me, I would rather hang out with friends than be stuck at home, chained to the bouncy chair all day and night. I would rather come play with your kids and cuddle your sweet babies than go to bed at 8:30 because my daughter can't sleep unless she's up against me. But the thing is, I can't. This is my life, and we reserve car trips for therapies and doctor's appointments because they are traumatic for everyone involved (side note: I've recently discovered the free valet parking at PCH, and it's so nice!!), so sorry if I sound like I don't want to hang out, it's not that at all.

Don't get me wrong, I love Sadie. I love that she knows me. I love that she smiles at me and "talks" to me. And I love when she falls asleep nursing in my arms (which is actually the ONLY way she'll fall asleep) because when I'm holding her I feel like we're NORMAL. But the fact is nobody is "normal". Go back and read the comments at the bottom of that post. Those moms get it too, because, like me, they've had to tell their friends/family/acquaintances, "the thing is..."

Sunday, August 22, 2010

Wow!! Did you know...

Many people say that whole wheat is healthier than white flour. And sometimes when people go on diets they cut out white flour, but haven't you ever wondered what white flour is made of and why it's so "unhealthy"? Well, here you go...

A wheat kernel is composed of 3 parts: the bran, the germ, and the endosperm (kinda fun how it rhymes, right?) Let's break these down.

The bran (wheat bran) is about 14% of the kernel. It contains most of the fiber and some vitamins and a little incomplete protein. It's like the peel of the kernel.

The germ (wheat germ) is less than 3% of the kernel, but it contains almost ALL of its nutrients. The germ is the seed and contains the stuff to grow new life.

The endosperm is 83% of the wheat kernel!! It is almost all starch and contains minute amounts of nutrients. This is what white flour is made of.

This is why 1. white flour is used in more things; because it doesn't have any nutrients it has a virtually infinite shelf life, and 2. people say whole wheat is healthier, because it's made from the germ of the kernel, where all the nutrients are.

Pretty cool huh?

Thursday, August 19, 2010

Chat Replay!

In case you missed the earlier chat scheduled Sunday with the father of Sadie, you can read the transcript below. All questions were welcome and all were answered.

Elsa (Fargo): Do you have your picture of Sadie posed next to a Banana? I love those.
Sadie-Pops: Yes! Thanks for asking. See below.



Mike (Austin Tx): Can you tell me about your feelings this past week?
Sadie-Pops: Interesting question from a shrink. Yes however. The EEG long term test in the early part of the week was tolerable. Despite being trapped in a hospital room without the ability to pacify Sadie through normal means, we could look at the potential end result and suffer during the test. We thought she was not having seizures however having medical proof is always a pleasurable outcome. We just had no way to stop her ear bloodying shrieks outside of making silly noises hoping you stumble upon something bizarre enough the she looks at you and coos.
The second eventful portion of our week, an OD due to a pharmacy error really was an interesting happening. When Sadie was born it wasn't any one's fault. It would have been nice to just have a doctor to blame or something, however it was just the results of some unfortunate circumstances. While we love Sadie thoroughly, we don't love her health. She got snake eyes on that one. In the over dose it was an entirely different feeling. There was a culpable individual who made a very bad mistake that really was the result of either shoddy work or simple stupidity. When we figured out what the dose should have been (by reading the prescription) we had an actual individual to rage against. While it felt good to simply flail and kick against an individuals error, in the end it does not benefit Sadie in any way to plot the destruction of the Pharmacy. An interesting time to introspect.

Pam (Traveling): Are you going to sue those bastards?
Sadie-Pops: We haven't decided at all. We do think they should pay for the hospital bills however we are unsure. We did consult with a friend who is a lawyer and he explained that our case is pretty cut and dry in that medical malpractice is a bad thing. That's actually why insurance is carried for medical personal. Malpractice here is pretty easy to prove.

Eric (Merced): How is she doing now?
Sadie-Pops: She's apparently decided that our week, while eventful, wasn't quite full enough. She's decided to pour buckets of drool from her mouth, continually nap for snatches of time only long enough to trick her parents into thinking she might actually be asleep, and cut no teeth. There is a lot of thrashing and moaning and complaining, but there are no results. I'm considering calling the dentist and asking if there is a surgery to help speed up this teething process. We get all the noise and awfulness of teeth - but no actual teeth.

Rachel (Eugene): How are the kitties?
Sadie-Pops: Fine. Wilson is cuddling up to Sadie when she's not flailing in protest over something. Barney will only come close enough that we can pet, but not Sadie. Sadie coos and woos at the kitties when she catches em out of the corner of her eye. She's certainly interested in them even if they aren't in her.

John (Queen Creek): Who wears the pants in your family?
Sadie-Pops: Sadie.

Mika (Roseville): What is Sadie's favorite song or singer?
Sadie-Pops: Not sure actually. She has stopped everything to catch bits of Simon and Garfunkle however she gets a regular earful of Raffi. I know all about Baby Beluga's and their play, but whether or not Sadie likes it...?

Christie (Phoenix): Have you considered trying to breast feed Sadie?
Sadie-Pops: No.

Christie (Phoenix): In some African tribes there is lore about glorious chieftans caring for an orphan child by allowing the baby to suck on his breast. He can even produce minute amounts of milk. The child can have its incredible desire to suck pacified by a simple act of unselfishness.
Sadie-Pops: It is a great thing we live in Phoenix and Sadie has a wonderful caring mother like yourself.

Mark (Santa Ana): What is the best part about being a father?
Sadie-Pops: Some questions are best left to poets and their muses. I am sometimes awaken from my stupor finding myself lost while looking into Sadie's face. Often times the highlight of my day is connecting eyes with her and having her break into a large grin. Knowing her in any way, one knows that she just doesn't smile unless there is specific stimulus given in order to exert a smile. Having her just smile at me, for being me, is pretty special.

I think the parental bond between child and parent is a metaphysical bond that is only accurately describable, understandable, knowable by someone who is a parent and loves their child as much as I love Sadie. I am not poet, and my muse is never to be seen, but I do know my feelings for Sadie - and right now this chat needs to finish as someone needs a kiss.

Sunday, August 15, 2010

Baltic Amber Teething Necklaces

A while back, at the recommendation of a friend, I bought Sadie an amber teething necklace. I never knew if it was working or not, but it sure is cute! Thursday at the ER, they made me take it off of her (probably in case they needed to do anything drastic), so I shoved it in my purse and forgot about it. Brian asked a couple of times where it was and I told him, but we never put it back on her. Friday and Saturday were two of the hardest days with Sadie, and I'm sure it was due to teething. She had drool on her shirt SOAKED all the way down to her bellybutton (and around the whole shoulder on the left side), she couldn't sleep - everytime she almost got there, she'd wake up and whine, and she wanted to suck suck suck until I swear my nipples were bruised! Then Saturday night, after we'd had a day of screaming (glad it was on a day Brian was home to help) and we were screaming toward a bath, Brian said, "she hasn't worn her necklace the last couple of days, I wonder if that has anything to do with it." I was skeptical, but he was right, we should put it back on her just in case. That night she slept 4 hours in her own bed, barely woke up to nurse (her and me), slept another4.5 with me, then woke up for an hour and a half before going back to sleep for another 2.5 hours...for a total of 11 hours!!! And she was less than half as screamy the next day (although getting her to nap was still tough, I imagine she still had some pain in her mouth)! I am going to attribute this attitude adjustment to the amber. Here's what I've read about it (and I'll cite my sources if you want to go do some of your own research):

Many believe it's the succinic acid in the amber that makes it so powerful. Baltic amber has the highest concentration of succinic acid. Succinic acid is a powerful antioxidant that fights free radicals in your body. Amber is a chakra cleanser, it absorbs pain and negative energy and allows the body to heal and rebalance itself. It can turn negative energy to positive as well as help with emotional healing. It draws disease out and helps the body heal itself. Amber is also a natural analgesic and is traditionally worn on babies to help alleviate teething pain. It is fossilized resin, which, when in contact with the skin, releases its therapeutic healing properties safely and naturally. Amber, when rubbed with a cloth emits an aroma, and it is always warm to the touch.

Baltic amber has been worn even in ancient times, and valued for it's beauty and healing properties. It was also traded worldwide. It has been found in burial sites dating back to the Stone Age. Scientists have found DNA in amber dating back hundreds of years (remember Jurrassic Park? That crap is real!). In fact, scientists have even studied insects preserved in amber to find out information about the past. It is thought that the name, amber, comes from the word ambergris, which is the waxy, oily substance made by whales and used to make perfume, candles, etc. However, the only similarity between the two is that they are both washed up on shore.

Most amber has been found in the Baltic region of Russia and Poland, but it has also been found many other various places around the world. Amber is mentioned in The Odyssey, as well as other Greek mythology. Another story, a Lithuanian myth, is more like The Little Mermaid, except without the happy ending. At the end of this story, the mermaid's father throws a bolt of lightning to kill her human lover and, as a result, shatters her amber palace where she lives in the Baltic. This seems to serve as an explanation for amber being so abundant in this region. There is an entire room made of amber in a palace near St. Petersburg, Russia, you can see a picture and learn more about it here.

After doing the research and learning about the rich history of amber, which is really neither a stone or a mineral, I am amazed that more people don't use it in their daily lives. It seems like we are so quick to trust medicines made from chemicals just because they're doctor/FDA approved. But, these can be very dangerous and can even end up hurting you more in the long run (even when used correctly and under supervision). I am not against Tylenol and Advil, but now that I've found amber (and am researching more homeopathic medicines), I think I might turn to it first.

...and that is why everyone will be getting amber necklaces for Christmas in my family!!

amber teething necklaces.com

amberizon
dragonflyamber
mikalina
amber artisans - this is the best one and has tons more historical information I just couldn't include!
inspired by Finn - you can buy amber from just about any of these websites, but this is the one where I got Sadie's necklace, she's local, and I like supporting my community by buying local

Saturday, August 14, 2010

Disney's Princesses


The other day I was across the street visiting the neighbors, and Eric (the daddy) was helping his 2-year-old daughter, Taylor, name all the princesses on her place mat. I was very impressed with his knowledge of the princess world and I wondered if Brian will ever be good enough to name all the princesses from Disney movies. So I made a little quiz and thought everyone in Blogland should see how much they know! Enough to have a daughter of your own?

Here's the quiz: Disney Princess Quiz

Here's a website to cheat, or to brush up on your princess knowledge: Princess Website

Friday, August 13, 2010

What does Sadie look like?

So, we've had a lot of comments about what Sadie looked like in her "EEG hat," so we thought we'd make a list of all the things she's been compared to. Here's some cute pics of her with her head all wrapped up:




Here's what we/other people think she looked like, in order from least to most:

5. The abominable snowman.










4. A vacuum cleaner.










3. Bib Fortuna.










2. A Teletubby.












1. A Snork.












What do you think she looks like?

Thursday, August 12, 2010

For Documentation Purposes

Today was a pretty scary day. My poor little Sadie spent most of the afternoon in the ER. Her woes seemed to be due to medical negligence, and so I write this to preserve the facts as we plan to move forward legally.

While in the PEMU earlier this week, Dr. Rabin suggested we start giving Sadie something called Baclofen to help with her high muscle tone. It's basically a muscle relaxer because she's tight all the time, he said he'll start her on the lowest dose and we'll see how she does. He also mentioned we should do it right then while she's on the monitoring because Baclofen can lower a person's threshold for seizures, and we'll know right away if this happens. We started it the next day, she was supposed to get .1mL 3 times a day, which is 1mg and BARELY a drop of medicine!

She seemed to do fine, and her muscles seemed to be relaxing, so Dr. Williams (the neurologist) wrote the prescription and the hospital found a pharmacy who would mix the compound and called it in. They also gave us the paper prescription when we were discharged Wednesday morning (she had been given 3 doses total when we left the hospital).

Brian picked up the prescription that afternoon and we gave her her first dose at home Wednesday evening (so she skipped the Wednesday midday dose). The bottle from the pharmacy said to give her 1mL, which is a lot more than the tiny drop we were giving her at the hospital. But, like so many medicines, I figured the concentration was different than what they were giving her at the hospital, and we gave her 1mL.

Sadie fell asleep that night at about 7:50pm. She snored a lot during the night, and even had some periods of apnea, it worried me a little bit, but I didn't know what it would be. She slept in her crib all night (which doesn't EVER happen), and when she stirred in the middle of the night, I pulled her to me to nurse back to sleep (and fill her tummy), but she fell back asleep as soon as she got close to me. I figured she had been cold and being next to me and under the covers made her all cozy so she could fall back asleep. I was AMAZED at how well she was sleeping! I even got up early and went for a walk!

I had to WAKE her up at 7:45am, and even that was tough. She didn't want to nurse, she wanted to go back to sleep!! I couldn't believe that she was still so tired! But I gave her another 1mL of medicine then (at 7:45) because that's when her next dose was supposed to be. Then I went to change her diaper and it was completely dry. I was amazed, and thought she must have slept hard! I was still having trouble keeping her awake though.

I got her dressed and tried to nurse her again, she sucked a little, but immediately started choking and coughing and gagging. I wondered if her new medicine was causing her throat to relax and making her aspirate. So, I called and left a message for her pediatrician. Then I tried to nurse again, same thing. She was really floppy, I could manipulate her arms and legs unlike she usually lets me, and she was very calm, dopey, not herself.

We had Occupational Therapy at 9:00am, Jessica came to work with Sadie. She noticed Sadie was sort of out of it also. When she got there I had placed Sadie on her tummy and she wasn't even crying like she usually does, she was just laying there passively. She didn't want to hold up her head, her top half was really floppy, but her legs were VERY stiff. And when she cried/protested, it sounded funny. Her voice sounded funny. About half way through therapy, I tried to nurse Sadie again because she was indicating that maybe she was hungry, and she nursed briefly, but she just wanted to fall asleep, so I pulled her off and gave her back to Jessica. At one point, when Jessica was holding her Sadie spaced out for a moment, even Jessica said, "you weren't with us for a moment there!" I wondered if that could have been a seizure and I worried since we had JUST come home with a seizure clearance.

As Jessica was leaving, I sat down to try to nurse Sadie again, thinking she was probably tired. She was crying a weird cry that didn't sound right, so Brian took her for a moment and he agreed with me that she was acting weird. I told him I wasn't going to give her anymore of that medicine until I talked to the doctor because I didn't like what it was doing to my baby. That's when Brian suggested maybe the dosing was wrong. During this conversation, Sadie had nursed herself to sleep in under 10 sucks and was SOUNDLY sleeping in my arms. Usually when Sadie sleeps, she startles a lot, and the slightest movement when holding her will wake her up, this was limp limbs, toss her around, never wake up sleep. We got the bottle of Baclofen and read the dosing again: 1mL. Then we read the strength, that it's 10mg/mL. I quickly did some math in my head and said to Brian, "wait, her prescription says to give her 1mg, and if this is 10mg/mL and we're giving her 1mL...we gave her 10mg!! No wonder she's dopey!"

We immediately called the pediatrician's office again, but nobody answered and we had to leave a message. Next I tried the neurologist's office and a nurse answered there, Stephanie. I told her what happened and she kept putting me on hold and trying to reach Dr. Williams or Dr. Jarrar (who also knows Sadie) to find out what to do. She said we could bring her in if we felt like we needed to, but Sadie was sound asleep in my arms and didn't seem to be too bad off. Stephanie told me that since it's a muscle relaxer to keep a close eye on her breathing, I assured her that Sadie was breathing, but her breathing wasn't normal. I asked her about the eating, because it was now 10:45 and Sadie hadn't really eaten much since 7:30 the night before!! She told me to try to wake her up at feeding times and encourage her to eat, but she may not be interested. She said it's important for her to sleep and when the medicine wears off she'll be hungry. And she made sure to tell me NOT to give Sadie anymore medicine until we talk to her again in the morning! She also asked about seizures. I told her I think maybe I saw one already. She told me to keep an eye on that and if I see Sadie having big seizures, cluster seizures, or doing anything concerning to bring her in right away.

I didn't want to put Sadie down. Her breathing was irregular. She was still snoring and having episodes of apnea, but I had to go to the bathroom and my stomach was growling because it was after 11:00 by this time! I laid her on the floor while I used the bathroom and made lunch and I noticed that her lips were blue. She looked dead and it scared me. But she was still breathing, so I figured we just needed to get through it and she'd be better tomorrow.

Then she woke up.

She woke up about 11:45am and was groggy, nursed a little, then went back to sleep for another half hour.

The next time she woke up (about 12:30) she wasn't happy at all. I couldn't get her to nurse, she just kept screaming, and her voice sounded funny (I think her vocal cords may have relaxed and this is why her voice sounded funny), it was lower, more throaty. So, I tried putting her in the bouncy seat and that didn't help either. I picked her back up and tried again to nurse her, more screaming. So, I laid her on my knees and she started shaking. Like weird shaking with her arms outstretched and uncontrollably. That scared me. I didn't know what to do, but then it happened again and the look on her face was of utter terror. I called the nurse back and she said, "I can hear her screaming, take her in."

I grabbed my purse, Sadie's blanket, and the medicine (and the written prescription) and headed out the door. I put Sadie in the car seat and called Brian as I was pulling out of the driveway. He said he'd meet us at the ER as soon as he could. Even though PCH is not the closest hospital, I knew it was the best place to take her since 1.they have all her records (and I mean ALL), and 2. I know they are the best at treating children. And I didn't regret it. The car ride was HORRIBLE. Sadie would stop screaming (probably because she was having a seizure) and I'd reach back and pat her on the head or flick her cheek to get her to cry again. I was so afraid she was going to stop breathing, and I couldn't see her. I knew as long as I could hear her crying she was breathing. The one time I WANTED her to scream in the car!!

PCH has free valet parking, so I pulled up and asked the guy where the ER was. He quickly wrote my ticket up and we practically ran to the door. When we walked in everything happened VERY FAST. I'm sure I looked terrified. I was carrying a screaming baby. One guy handed me a visitor's badge, another guy asked me what happened. Luckily, I had the presence of mind to bring the medicine, so I pulled it out of my purse and said, "she ODed on this." I followed a nurse back to a room and laid Sadie on the bed and that's when I saw the scariest thing I've ever seen. I saw a BIG seizure. Her pupils were dilated, her eyes were darting back and forth, her arms were outstretched shaking, then she'd bring them in tight and to her chest and everything went rigid. I said, "look! Look what she's doing!" I swear we all stood there with our mouths open and watched. They quickly got a pulsox on her to measure her oxygen levels, I told them her breathing was irregular, then they stripped off her clothes and put the EKG monitor stickers on her to measure her heart rate, and a blood pressure cuff went around her ankle. I was crying, they were telling me it's not my fault and I came to the right place, then the lady came to ask me who we are. This is why I came to PCH, all I had to do was tell her Sadie's name and birthdate and she was able to get everything from the system. That took a load off of me!

I was asked a lot of questions about Sadie's medical history and about what happened exactly and what I had observed up until now. Then Sadie calmed down a little bit, and I calmed down a little bit, and WHERE WAS BRIAN!!! Next a doctor came in to ask me more questions and to look at Sadie. He took the bottle of medicine and went to call a toxicologist. When I asked him how do we detox her, he said he was waiting to hear if what we gave her was a toxic amount. If it was determined that she did get a toxic amount, they'd admit her and keep her overnight. If not, they'd just keep her for a few hours to monitor her. By the time he came back, she was already coming out of it. The doctor told me she wasn't acting like she should if she'd ODed on Baclofen. When I asked him what it should look like, he described to me what Sadie had been doing the first half of the day, before the seizures started. But once she started seizing, she tightened back up and started screaming, instead of being floppy and comatose, like before. He said it's good that she was looking more normal, even her pupils were starting to shrink a little. By the time Brian got there she was almost quiet.

They decided to keep her and watch her for at least 4 hours. They wanted us to sit with her and let them know if we see anything weird, or normal, and they wanted to make sure she could eat and pee and stuff before she left. So, we sat there for a long time. And Sadie calmed down quite a bit, but everytime I started nursing her she'd cry, or even scream again. But, eventually she did nurse, and she started to fall asleep again, and eventually she did fall asleep, and she was soundly sleeping when the toxicologist came in to talk to us.

We relayed our story again to him and he assured us that any seizing that Sadie did did not cause permanent damage. The thing they'd worry about with seizures is low blood/O2 levels because these can cause lack of O2 to the brain, but Sadie's levels never went so low that she was in danger, and she was at 98% when we were talking to him. He also said that the amount she overdosed was not enough to have long-lasting effects on her system. He said we gave her 10X too much, but it'd really have to be 1000X to REALLY hurt her. So, that was good news too. He told us we could choose to keep her overnight for more monitoring, which he recommended, or we could take her home. He wanted to keep her there in case she had another big seizure with the crazy eyes and the tightening up of limbs and everything. He said they could break it via IV if she was in the hospital. We politely declined. We have the same medicine at home that they would give her in the hospital to break/treat the seizure, she seemed to be a lot better already, and we (I) did not want to stay another night in the hospital!! So, at 5:50pm, we left PCH and headed home.

Since we've been home, Sadie's been a little fussy. We had to give her her phenobarb (unfortunately), but then we took a nice long bath, and the warm water calmed her down quite a bit. She is still very tired, and as soon as we were out of the tub, she fell right asleep. And she's sleeping hard, she is laying next to me on the couch as I type. She will be sleeping with me tonight so that I can listen to her breathe all night! And hopefully in the morning, she'll be back to her *cheerful* self again. Poor little baby, what a rough day!

Wednesday, August 11, 2010

Day 2/ Night 2 in the PEMU

Another day down in the PEMU. Some things happened (like X-rays), and some didn't (like naps). Sadie screamed another day away, and then finally fell asleep an hour before daddy came. I've never needed a break from her so badly before!! And I did get a break once she woke up and Brian was there to watch her.

I went down to the library at the hospital and checked out two books. The first one is called The Out-of-Sync Child and claims it's the "parents' bible to Sensory Processing Disorder. I haven't started reading this yet, but I hope it has some ideas on how to help Sadie cope with her environment. The other book I checked out is called Teaching Motor Skills to Children with Cerebral Palsey. I might actually end up purchasing this book. It is really good and seems like the kind of thing we will want to continually reference as Sadie progresses. I just started reading this and it's like they KNOW my child, which makes me feel like the advice and exercises they recommend are credible. I'm excited about this book.

X-RAYS?! WHAAAA?!! That's the reaction I had. Sometimes it's like people at the hospital assume you can read their minds, so they just drop information in conversation like it's no big deal. Not much gets by me. I asked. The nurse told me some doctor I'd never heard of (let alone met) requested X-rays of Sadie's hips. I was sure they must have gotten her mixed up with someone else...but then she came back and told me it was actually Dr. Rabin (he's the rehabilitation therapist we saw the first night we were there). And actually, I was glad they were going to X-ray her hips, because I have hip issues that are hereditary, and her condition makes her prone to hip issues, plus genetics do too. The outcome was that her left hip is a little out of socket, so we are supposed to go see Dr. Rabin in a couple of weeks to talk about what to do about this. Because of my history they can't tell yet if Sadie's hip displasia is congenital or developmental, but I'm glad they're finding it now and not when she's learning how to walk.

Our night was rough, but that's to be expected with sleeping with the lights on. Sadie fell asleep fairly quickly once she had her medicine and her melatonin. Sadie's getting good at falling asleep nursing, but then letting go and not needing to nurse the entire time she's asleep, so I was able to sit there for a while with her while Brian and I hung out a little. And I met our night nurse. It was almost 7:30 and I mentioned to her that when Sadie wakes up in the middle of the night she can check her vitals (they have to put this blood pressure cuff on her and it squeezes and she hates it) and give her her (new) medicine, and more melatonin. This worked SO WELL the night before. What I didn't realize was that the night before we had a competent nurse. So, Sadie and I laid down around 8:00 and she slept soundly, while I laid there and listened to the announcement that visiting was over, then listened to people saying goodbye and leaving, then listened to children protest to shots/going to bed/etc, then listened to babies crying...finally I turned on some white noise. But, our nurse came in around 9:00 and listened to Sadie's heart and lungs and tummy, and we talked again about how I'd call her when Sadie wakes up (between midnight and 1) and we can do meds and melatonin. 1:00 came around, Sadie woke up, and I held up my side of the bargain. However, nurse "doesn't-get-it" had to call the doctor to approve the melatonin (even though we gave it to her the night before AND I told her twice I'd like to give it to her again), then wait for the pharmacy to send it up. It took almost 2 hours, and by the time we gave it to her we had lost our window of opportunity to go back to sleep peacefully. I ended up having to move to the little couch and nurse her to sleep, then bring her back to bed. Normally, this wouldn't be a big deal, but 1. we were sleeping with the lights on and I was REALLY tired and cranky, and 2. she was all hooked up and moving her takes 2.5 hands (but it's easier with 3). Needless to say, I'm super mom and was eventually successful at not only putting her back to sleep, but transferring her to bed without her waking up. Whew!

Morning came too soon, and people started coming in and out of the room hustling and bustling about. Before we realized, there were 2 ladies in there removing Sadie's "headdress"!!! They never told me, but I figured it was a pretty fair assumption that we were going home! Soon after Dr. Williams came in to talk to us. I love what he said, "we treat seizures, and since she's not having seizures and there's no EEG seizure activity, there's no reason for her to be treated." I think we probably knew this 3 or 4 months ago...but the medical world needs real, tangible evidence. Now we have that evidence and we can go home and start weaning off the phenobarb. It's going to take 6 weeks to wean Sadie down because it's important her body doesn't go into shock or withdrawals from being on it for almost 7 months, but then we'll be done!! Dr. Williams was careful to tell me that Sadie still shows a lot of tendencies for seizure activity and don't be surprised if they show up later down the road, but he never promised it will or won't happen, just that we'll cross that bridge if we have to.

So, we go home victorious. To God be the GLORY for my baby's health and well-being. And may we never have to sleep with the lights on again!!

This was a test where they flash a strobe light into Sadie's eyes to see if it'll induce a seizure.

Cozied up with my babe.

This is Sadie sleeping, you can see the video of her in the background. We were always being watched, it was sort of creepy.

Taking the EEG off was a little easier than putting it on!


Sadie flirting with Dr. Williams (they were saying goodbye)

Tuesday, August 10, 2010

Day 1/Night 1 in the PEMU

PEMU stands for Pediatric Epilepsy Monitoring Unit, and boy do I wish we didn't have to be here!! Sadie is being hooked up to an EEG monitoring system to determine her seizure activity in hopes that we can be med-free...at least for seizures!

We got here about 7:15 Monday morning (on 8-9-10!) after Sadie had pretty much woken up around 2 and never really went back to sleep (maybe a short nap in the bouncy seat). So, we were all tired and cranky to begin with. But people at the Children's Hospital (PCH) are so nice, and they welcomed us no matter how whiney or cryee we were...mostly Sadie was this. Luckily, we had brought the bouncy chair with us, so Sadie was able to bounce for most of the morning, when they weren't squeezing her, and listening to her, and undressing her and measuring her. However, once they put on the EEG electrodes, we were told the bouncy chair 1. was too much movement on her head where the electrodes are, and 2. was too much motion and interfered with the EEG reading. So, we had to give it up cold turkey.

We met a new neurologist, Dr. Williams, the one recommended to us by our pediatrician (everybody LOVES our pediatrician, by the way...I think we hit the jackpot with her!). In the 20 minutes we talked with him, we probably got more useful information than we've EVER gotten from Dr. Jarrar in all our visits combined!! He said he was going to go ahead and make the diagnosis for cerebral palsy for Sadie (Dr. Jarrar simply told us they can't diagnose until kids are 2, but she'll have it for sure), and he really made sure I knew what that diagnosis means. Then he went the extra mile and called the library here at the hospital and had them put together a packet of information (complete with an available book list) about CP for us, and told us to check out the CP You Tube channel. When I mentioned that we don't communicate well with Dr. Jarrar and he's been recommended to us as a neurologist we might want to switch to, he told us that if it's determined that she's not having seizures, he'll give us a schedule to wean her off the phenobarb, then we won't really have to see neurology anymore unless she starts having seizures again at a later date...which is realistically possible. Then he mentioned that her muscles are tighter on one side more than the other and wanted us to talk to a habilitation therapist (I think Dr. Jarrar mentioned this therapist, however, all she said was we needed to see him...not how, why, or who he was). This therapist, Dr. Rabin, came in later and mentioned that we could get a brace for Sadie's trunk to help her with sitting. He also said there's medicine to help with muscle tone that can help her have more control over her limbs (which would be nice as she's starting to sort of bat at things and reach for them). We're going to try this medicine while we're here in the hospital because one of the side effects is that it lowers her threshold for seizures, Dr. Rabin thought since she's being monitored right now it'd be a safe place to experiment. (the other side effect he mentioned was sedation...which I don't like, but on a low dose it might just be enough to make her tolerable)

Once the electrodes were put on Sadie's head, which she HATES, she continued to scream for another 3 hours!!! We had no bouncy chair, so I was stuck just letting her tire herself out...which you would think would be short seeing as how she was short on sleep. Nope, not my daughter!! Unfortunately, we are also being video monitored, so not only could everybody in the hall hear her screaming, but most of the staff could also SEE how miserable we were. However, this turned out to be a blessing once she finally fell asleep because they knew how long and miserable the going to sleep process was, and they knew not to disturb us. So, we had 3 good hours of napping undisturbed. Luckily, my dad came during this time and I was able to hand Sadie off to him and get a break. There's no way I would have been able to sit there for that long with her! And I was able to lay down for a few minutes as well. It's hard to move around with her anywhere because she's all wired in and whenever you go anywhere with her, you also have to take this "battery pack" pouch and make sure none of her cords are tangled. It's not easy if you're by yourself.

Later in the evening, Brian came and we were able to have dinner and get Sadie her medicine. She luckily went to sleep pretty quickly. It was funny because her bedtime is right about when the nurse shift changes, so our new nurse came in to check her vitals and stuff and I was like, "she's down for the night, sorry dude." So, we agreed I'd call him when she woke up, which happened to be about 1:00am. We had also talked to the nurse about giving her a second dose of melatonin at this wake up juncture (because she has a tendency to wake up and NOT go back to sleep for 3-4 hours), so we were able to give her more of that around 1:30 and in an hour she was back asleep...until 8!!

Sleeping was rough on me. When we first checked in to the hospital they had a crib in the room for her and told me the couch folds out for me to sleep on. I very politely told them there's NO WAY she's gonna sleep in the crib without me...as much as I'd like her to. So, they brought in a bed for us to lay in. It wasn't a bad size, we both fit in it pretty well, so I think that helped her sleep as well. But because they have to video her, we had to leave the lights on all night...OYE! Okay, for one, it was a little creepy to be videotaped sleeping (even though I bet we were pretty cute all cuddled up together), but we layed down about 8:00pm, and I woke up at 9:30 SURE it was probably 2 in the morning already. I couldn't believe it'd only been about an hour and a half!!! Sleeping with the lights on is ROUGH, like prisoner torture rough. Plus, to top it off, the night shift wasn't real quiet out in the hall at about 3:30, and starting at about 7am, they started coming in our room and checking things.

This morning, Sadie has been in THE BEST mood!! Sleeping really helps...if only I had had restful sleep as well, but I think we know what to do now at home. Dr. Williams just came in and told us he saw NO SEIZURES yesterday!! woo-hoo!! He said I almost fooled him when I was bouncing her (during her 3 hours of SCREAMING), but then he looked at the video and saw why it looked like seizures (see? good thing they do the video). He said of course she is still at a 70%-90% risk of developing seizures in the future because of the brain damage she suffered, but that if he sees the same thing today he'll let us go home tomorrow, with a schedule to wean her off the phenobarb. This is the best news we've had since we were discharged from hospice!

So, we're here for Day 2 in the PEMU. I'm going to try to get down to the library, and try not to be too bored! Keep praying for us!

This is Geri, she's done all of Sadie's EEGs, even the ones in the NICU. She's really nice.

Daddy always makes it better with his silly noises and his kisses.

video

These are the electrodes Geri put on her head, 25 of them. Each spot scrubbed, dabbed, and "cemented."
Almost done and ready for the gauze hat!

Geri working on Sadie's head. She is VERY good at what she does. I'm always amazed.

Sadie's ski mask...or we like to call it, her "abominable snowman costume!"

Finally asleep with grandpa after 3 hours of screaming.

So happy after a nap!


Getting ready to go to bed!


Tired baby. She was asleep within minutes of this picture!

Sunday, August 8, 2010

Generic Post

No Pictures. Not even an interesting story to make up for it. We made baba ghanoush but only documented the Egg Plant as whole, post grilled and then the finished product. We completely forgot the middle steps and considered inserting a Sienfeldian "yadda yadda yadda" into the recipe but that didn't seem fair considering someone, anyone, might actually be inspired to try baba ghanoush.

We only made it because it is the only productive portion of our garden at this point. Everything else burned up or is barely alive trying to survive until it cools down. We harvested 10 Egg Plants and needed a unique way to eat it.

A fun Sadie story, she has begun to realize when we are not in a room with her. This is an event that brings us mixed emtions. We really like the development, however the whimper cry when we're not with her (going to the bathroom, rummaging through the fridge, inspecting cat damage during their desperate ploys for attention, etc.) is a bit troublesome.

Coming up: Sadie has her lengthy EEG to determine whether or not she is having seizures. We suspect they do not exist.

Friday, August 6, 2010

Foundation for Blind Children

Last week we were visited by a lady named DeEtte from the Foundation for Blind Children. Since Sadie has been diagnosed with CVI (cortical visual impairment) she qualifies for services from FBC, and I had no idea how much of a blessing that would be!!

DeEtte was super nice. She played with Sadie a little, she had a bag of tricks which included a big yellow and gold pom-pom. Sadie LOVED the pom-pom and DeEtte showed me that Sadie was even trying to touch it a little. She really likes yellow, I guess yellow and red are the easiest colors to see. (McDonald's is genius when it comes to marketing!) DeEtte was impressed and noticed that Sadie really sees a lot and is able to follow a lot of different things. She recommended getting Sadie a toy bar so that we can hang toys in front of her face and encourage her to bat at them.

She gave me a flyer about deep tissue massage, which is supposed to help organize Sadie so that she's not so sensorily stressed out (I don't think sensorily is a word, but it fits best with what I want to say) and she recommended the book where the flyer information was taken. I ordered it on Amazon that day.

But the best thing she told me about was the infant program at the FBC Center. This is a play group they do Friday mornings and it starts with music therapy, then lets the adults split off into a group where they can talk, while the children continue to play with other FBC staff. This sounds like MY kind of play group!! Other special needs parents? All the babies will be special instead of us being the only ones? Free music therapy?! How could it get any better?! (you can read more about it here)

This morning we attended for the first time. What DeEtte failed to tell us (probably because that's not really her department) is that in the summer time, they 1. have the infant program in a different building, and 2. it's only the music therapy portion, oh and 3. it starts at 9:30 instead of 9:00. So, when we showed up this morning, there was a decent amount of confusion, but we found it and we had fun...well, I had fun. Sadie made it through about the first song, then she fell asleep and slept through the whole thing!! haha!


We plan to go back next week (and maybe even participate). Then the week after next the program goes back to "normal" and we'll be able to participate in the entire thing. I'm really excited about this, and I'm so glad we've been hooked up with the Foundation for Blind Children.

I'm sorry it's hard to hear, but I thought you'd enjoy the last song we sang!

video

Tuesday, August 3, 2010

First Foods

We've officially embarked onto the world of first foods. My original desire would have been to use the baby-led weaning method, and I'm a little sad that we haven't been able to go that route, but it's really all about exploring and grabbing and baby sticking things in her own mouth. Sadie can't do those things yet. And who know how long until she will, so we instead have started with purees and a spoon.

When we saw Dr. Wendy last week I asked about solids and she mentioned that she thought it'd be okay to start stage one foods. She told me to watch for severe tongue thrusting (like not getting ANY down her throat) that doesn't seem to be correcting itself. This is a sign that she's not ready. And of course we had to really be careful of choking and watch for that since everybody is still hyper-paranoid about her swallowing. (HIE babies have swallowing issues, Sadie seems to have grown out of hers, but nobody is willing to accept that) Armed with what the doctor told us, a high chair, and some fresh pureed squash from the garden, we went for it!

video
Sadie did really well her first time. She didn't eat a lot, but that's to be expected. She was able to figure out how to use her tongue to swallow...after a few tries. And still most bites end up all over her face! She is pretty cute though when she eats. The next day, we tried again and she ate a LOT more that time. She's doing such a good job!

So, we continue with squash for the rest of the week, being careful not to introduce too many new things at once, just in case! Then maybe over the weekend we'll try bananas. There is conflicting advice as to whether to start with vegetables or fruits for worry that your baby will get hooked on the sweetness of fruits, but bananas seems like a great next try!

I'm working on making my own baby food and have gotten a book from the library all about it. It seems pretty easy, and since I'm cheap, it shouldn't be hard to do, especially as she grows into more sophisticated stuff. We have a food processor and a freezer, that seems to be all we need really. HERE WE GO!!!

Sunday, August 1, 2010

Hippy Banana



We have been hippy-ifying ourselves quite a bit recently. We recycle nearly everything. We compost our kitchen scraps and we garden extensively. We use cloth diapers. We however have taken a new step in our Hippy-tastic lifestyle. We now are proud owners of a wheat grinder.

A few years ago we had dinner with Aunt Elisabeth. We spoke about libraries, El Paso and grinding wheat. I thought grinding wheat sounded like a blast and a very interesting thing to do. Fast forward a while later, and we ran into Aunt Liz again. She proudly told us that she managed to secure two giant buckets of unopened wheat kernels. Awesome! Thanks! How do we grind it? Stone and pestle she joked. She recommended that we find someone with a wheat grinder and borrow theirs. I know of no one who owns a wheat grinder locally. So the wheat berries sat in our kitchen enjoying the pantry.



We recently bought a new washer - don't worry, we clothes line dry our clothes -a front loading washer with a sanitation cycle (to sanitize cloth diapers). At the time of purchase there was an Arizona Rebate program going on. It essentially was a cash for clunkers but for old inefficient washing machines. So we signed up for it, and three months later received a 200 dollar gift credit card. We used it to buy a wheat grinder.


video

We made bread using the ground wheat last night, however the outcome was awful as the bread did not rise. The end product was a cinder block, teeth chipping chuck of wheatastic inedible disappointment. I'll try again once I'm done mourning.


The other learned bit of knowledge: my arm is sore from grinding 2 cups of wheat. It is hard work. The appeal of an electric grinder is apparent. Plugging an electric grinder in and pressing "go" is certainly easier. On the bring side, grinding 2 cups of wheat will give me a 20 minute arm work out. Yes....20 minutes.