Saturday, May 29, 2010

Latest Doctor's Appointment

Doctors, doctors and more doctors. I guess I really shouldn't complain. Emma is doing great and her follow ups with all her specialists are getting further apart. Still though. I feel whiney. I am allowed to whine, right? Some days I can whine and make it all about me, can't I? Does it mean I am being selfish? Yes. However it helps. It's healing to sit on the pity pot from time to time. I have learned this over the years of trying to heal since Emma's injury.

Alright, so we had Emma's follow up with her neurosurgeon on Friday. It was a good appointment. Ok. Well, Emma wasn't behaving in her typical fashion but she is like that at every doctor's appointment (kid with a brain injury who has been traumatized, it's understandable why she is so high strung). She loves Dr. Shafron, gives him hugs as long as she doesn't see the doctor in the OFFICE. It's quite funny. Understandable but funny. Good news is that her shunt looks good, she has plenty of extra tubing so no need to operate on that part anytime soon. So yay! He doesn't know if she really needs it anymore at this point but it's definitely NOT worth the risk to put her under to remove it to either a) find she still has the hydrocephalus b) risk infection and c.) it ain't broke, don't fix it. It's not infected, it has never malfunctioned (knock on wood), so let's leave it be. It's always a relief when her appointments go off with out a hitch. Yay! He is pleased with how her head looks after her cranioplasty last year! Yay! Emma has a whole head! Hooray! When the doc says everything looks great, he can't be any happier and is impressed with all the progress she is making, I can exhale. Which has me thinking, I am always impressed with how great she is doing. I can only imagine how the doctors react when they see her! I mean, my goodness, when Dr Zimmerman (the ER doc who is now a Forensic pediatrician) saw Emma she was unresponsive and without a good prognosis, she was stabilized and sent to the neurosurgeon, Dr. Shafron, who saw a gravely injured baby, performed emergency brain surgery, saved her life and has had the opportunity to see her grow and accomplish things many of us never expected because of the work each and every doctor she had at Phoenix Children's. From the decisions made in the ER to the choices made in neurosurgery to each and every move made in the PICU to the therapies and the medicine in neuro rehabilitation, every move gave me the child I have today. Albeit a very boisterous, intuitive, high energy, and frustrating child, but she's mine. My daughter. My baby. My heart and soul and she is a great girl.

Wow. That was a tangent. I get like this. Especially this time of the year. Whenever she sees her doctors, I get grounded on the fact that Emma has a brain injury. It's not like I don't know it any other day but I grounded to the fact. I am also looking at the calendar and in one month and 10 days it will be six years since the day Emma's life was taken from her, to the day that she died and was reborn, to the day she was permanently shattered, to the day my heart was broken forever, the day I was torn to pieces as I was helpless to protect my child, the day I learned child abuse doesn't just happen to the people you read about, we became THOSE people, and we have healed.

Also, April 3, my daughter Angelique would have been 9 years old. I think about her and how tiny she was. 14.6 ounces and 13 inches long. Tiny, beautiful and fully formed and born at 23 weeks. She had cysts on her brain and cysts in her kidneys. I had her autopsied and she was found to have diffused renal multicystic dysplasia. We thought Polycystic Kidney disease, like my first born, but polycystic kidneys have a 1 in 4 recurrence rate because it's a recessive gene and the cysts are uniform, meaning the same size, but multicystic dysplasia is much more rare and the cysts are not the same size. My first born was born September 18, 2000, sweet Alanna, and she was born at 32 weeks from polycystic kidney disease and due to the size of her kidneys her lungs and heart were to small and she died from a respiratory arrest. She was 4 lbs 6 ounces and 17 inches long. She had a potter's face, meaning her nose was smashed and her ears were low set and floppy. She didn't have a chance of survival and it was already arranged for when she was born to have no resusitation attempts. Then came my sweet beautiful Emma. She was 8 lbs 6 ounces (I just noticed my girls seem to have a 6 at the end of their weights!) and 19 inches long. Just a beautiful, beautiful baby. And a good one. So quiet and so wonderful. Sigh. I miss the baby smells, the baby snores, and the pathetic but sweet baby whimpers. Now that she's six she likes to yell at me and give me tons of 'tude.

She still lets me kiss her. I hope that lasts a little longer than other kids. She is so sweet. I feel naive when I say, I hope her sweetness and loving nature never goes away.

Wow. Went off on another wordy tangent, huh? I would post photos of myself and my first two girls but I don't want to shock anybody because they are deceased in the photos. :(

Oh yeah! Dr. Shafron is having a meeting with the medical director of AP/IPA insurance. They are denying kids for botox. They want the kids to try other, and costly, medications before approving botox. The problem with the other meds is they are systemic which isn't good for kids who are a hemi (like Emma, one side is affected) and have behavioral problems (once again, Emma). So, we hope that at this meeting AP/IPA can listen to the facts and allow our children the botox. Emma needs it badly in her left arm, well primarily her wrist. It's getting very atrophied and she is so sensitive to touch that we aren't able to get much accomplished. Obviously I can touch her left arm but that doesn't help at school or in therapies. I have a lot of faith that the medical director will listen to fact and reason. It would cost much more to put a child like Emma on baclofen. Th ecost of the meds, more doctors appointments, more costly to the school district, more therapies, etc to help offset the problems it will cause. Doesn't make sense to increase problems, does it?

Review: Hamilton Beach Handheld Mixer from CSN Stores

I was given a fantastic opportunity from CSN Stores to review a product and I chose the Hamilton Beach handheld mixer. I needed a mixer very desperately after my last one broke in the middle of mixing a cake. I was sad because #1 it was garbage and #2 I had mix BY HAND! Yuck!

I thought this one seemed like a good fit for me as it has the snap on case that holds the attachments (the two beaters and I loved the WHISK!) and you can easily tuck away the cord and keep everything all nice and tidy without losing the pieces! The shipping was lightening fast, fast shipping creates a happy customer!

I decided to test this new mixer out with a new recipe, Gluten Free Crepes. I used the whisk attachment and on the lowest speed setting, the speed was there and you can definitely feel the power of the mixer and that tells me, the next time I bake a cake, this bad boy isn't falling apart! Definitely check out the CSN store websites!. Highly recommended! A huge thank you to CSN for the review opportunity!

Now on to the crepes.

What a freaking disaster! Seriously! I used to make the classic version and have never had an issue but now I need to have them gluten free thus attempting to make a gluten free version. I know this is going to take some tweaking and getting used to but wowza! This, I believe, is my worst cooking disaster to date! I planned to make a pomegranate cream cheese sauce with this, but glad I didn't waste making it. Well, I might still as I purchased some of Bob's Red Mill mixes at Sprout's at 25% off and will make gluten free pancakes in the morning.

Here's the recipe and the disastrous photos:

2/3 cup milk (I used rice milk)
1/3 cup cornstarch
1 egg
2 teaspoons olive oil or melted butter (I used Olive oil)
pinch of salt


1.Mix all ingredients until very well blended.

2.Spritz a pan (small, nonstick) with olive oil (I used butter). Preheat the pan over medium-high heat.

3.Pour 2 Tablespoons of batter into the pan while swirling the pan.

4.Continue to swirl the pan – OFF the heat! – until the batter begins to bubble and there is no longer excess batter to swirl.

5.Cook for 20-40 seconds (the first crepe takes the longest… this time is for the quicker crepes) or until steam is puffing out the sides.

6.Quickly and with some care, flip the crepe and cook and additional 15-20 seconds.

7.Continue until all the batter is used. (Depending upon your pan, you may not have to spritz it with oil between crepes.)

Bust. Enjoy the photos:


Ugly #1

Ugly #2

And the least ugly of them all:

Hope you get a kick out of this disaster as much as I did!

disclaimer: CSN provided me with a product to review however they did not pay me. My opinion is mine and mine alone.

Saturday, May 22, 2010

So proud!

St Joseph's Hospital in Phoenix Arizona is well known for being a leader in the field of neurological disorders, injuries, etc with thanks to Barrow Neurological Institute. My opinion however, is not as praising. I adore Phoenix Children's Hospital. I will ALWAYS have a huge place in my heart because without the doctors, nurses, and staff, Emma would not be alive today. Now, due to insurance and I am sure, convenience to the Rehab Services clinic, Emma's imaging studies are done at St. Joe's. Not a fan. Frankly, neither is my daughter. Last month she had an ABR test (An Auditory Brain Stem Response test, which came back NORMAL, thank the gods!) under sedation. She was, understandbly upset. She despises the mask, the way she feels afterward and feels like I betrayed her. She is starting to get to where she shakes when she gets to the hospital and starts getting extremely anxious. Her parting words the last time, slurred from the after effects of the sedation, were "I HATE that hospital". Honestly, I can't blame her. I do too.

The last time she had a CT scan there (routine, not when she has come by the ambulance after a surgery), the CT techs were rushed and didn't really want to try. The copped out and she had to go under sedation. I was pissed. I know she can lay still. Well, on Wednesday of this past week, she needed another routine CT Scan and Shunt series (to look at her shunt that is on her brain and goes to her stomach to keep the fluid off of her brain) and I told the nurse and techs that I demand they give her the extra time she needs to feel comfortable and not rush her. If that means SCHEDULING her longer than 20 minutes, SO BE IT. I promised Emma she will not see the doctor with the gas mask. And I held up my promise and I am so so so proud of her! She did need extra time to get on the CT Scanner. The tech was AWESOME and allowed her to play with the buttons and move table. She put her doll through the scanner and even me too! She was such a big girl and laid so still and didn't cry! I wanted to cry just out of seeing her being such a big girl! She was so proud of herself, rightly so! and walked around telling everybody she "Is a Good Job!". Then she got her Xrays and saw her skeleton and was so excited! Heck, I was so excited to see it. I haven't seen her skull since surgery and it's beautiful. I am so beyond proud of my sweet, beautiful daughter.

She is amazing! Each and every day she amazes me with her spunk, spark and happiness! I told the tech, Emma isn't stupid and oblivious, speak to her and explain to HER what we are doing. Do not talk over my daughter. It will make her upset.

Le sigh. She is growing up. I am getting old. She is getting to where she doesn't want to hold my hand anymore. Thankfully she still loves hugs and kisses and saying I love you. I cherish each day. Each hug. Each kiss. Each I Love You. and Each moment.

Saturday, May 8, 2010

Absolutely, positively beyond...

My daughter is nearing her seventh birthday. Huge!!! However, out of all the years of parenting her, I am at my peak of frustrationg. I never had those sleepless nights or frustration that I have now. Maybe I am expecting too much from her but jeez-Louise, help me help me help whatever deities are out there! She is at the stage of not wanting to listen, she is very vocal and very intuitive, and she is not potty trained. I sat down last night and cried for two hours. I am about ready to start crying again. I feel like maybe this is ME. My inability to parent. Maybe I am not meant to be a mother? Why in the world is my child who is very smart but is nearly 7 still not potty trained? I have been trying for nearly 5 years to get her potty trained! What am I doing wrong? I am wondering if there is something deeper going on with her. Two days in a row she has gone number two and it's all over the place. She either can't feel this or she doesn't care. She is on a potty schedule, she gets praised, rewarded and all the things we are told to do but not working! She RARELY voids on the potty! I know that potty training is one of the hardest things to do but nearly FIVE years and we are doing no better now than it was five years ago.

Blah. I just need to vent. Maybe I need a glass of Chocovine after Emma's asleep tonight. Watch a movie. Bawl. Whatever. Poo.

Oh and off to yell at the Children's Rehab Services Referrals person for scheduling my daughter's CT with SEDATION WITHOUT consulting me. This pisses me off. The nurse knows I don't want her sedated and if I can't make head way with referrals, then I will call the nurse. The nurse who works in the neurosurgeon and physical rehab department is wonderful and will help me. ALSO, I left several messages with radiology and with referrals without a return call as I have been trying to get this scheduled because I need to be able to request time off with enough notice to my supervisor. I work in Radiology myself. I know protocols and so on but honestly, if you are in Phoenix and need medical care for your child, don't use St. Joseph's Hospital. They really really really suck. The last time she had CT imaging there, the techs were just asses and pretty much refused to really TRY taking her images. Then said "Whoops! Already radiated her three times, send her to the ER and let them sedate her!" So every time it turns in to a flipping debacle. EVERY FLIPPING TIME. The issue is that that hospital is not dedicated to children so the techs aren't dedicated to any one department. The last time we had a CT for her, she was willing and ready but they pulled the bed through the gantry while she was answering me when I was explaining that she has to hold still. Three times they did that. However, I guess this boils down to an insurance issue as to why we have to go to that piece of shit hospital. I like the doctors we see at the CRS clinic but St. Joe's flat out SUCKS. Skip the bullshit and take your child to Phoenix Children's Hospital. They rock. Except when we were there the last time for her surgery, I thought General Pediatrics looked ghetto and dirty. Big difference in 5 years time. Medical care was great. Had a nurse though on the General Peds floor that only wanted to talking about becoming a Nurse Practitioner while Emma was vomiting from pain from her vein blowing out. Oh and the secretaries were a little pissy. But much better than St. Joe's. Maybe I am just in a bad mood and just want to complain. Boooo!

It's been a bad week.

My stomach is killing me every day. My hips hurt. My back hurts. I am fatigued. I am depressed. I am irritable. My blood work is coming up normal. No h. pylori. No signs of infection. My imaging studies are all normal. Boo. My doctor. No. Change that. My doctor sucks. The PA that works with my doctor thinks I need to go gluten free. I have been working on limiting the gluten in our diet for Emma and already don't use cow's milk, rather we drink Almond, Rice or Coconut milk (not the kind you cook with!). So, I am ridding my cabinets of all items that contain gluten. I need to get wheat/gluten free soy sauce. I can't imagine life without soy sauce. Good thing I love rice and all kinds of Asian food (I make most of ours! big pat on my own back!) and not a huge Italian food fan, huh?

Ok. I am done bitching.