As Safe as Life Gets

2010-01-13T14:30:00.004-05:00

Well, it's been a good long while again...Sorry. Let's see, what's been going on in our neck of the woods. I have begun to set up my midwifery practice. Always thought I would take some time off and then start but, the Lord has been gracious and sent me a few clients so, I am starting to work sooner that I thought. It's been a fairly easy transition to go from being someone's employee to being my own boss. It's been nice to make my own schedule and to make my own charts. I love that I am able to do prenatals at my house or at the clients house! However, I do miss the closeness of having another midwife sister around often. Maybe I should start a midwifery lunch meeting once a month! Then I could get my fix...lol. The girls are doing well. Gracie finished kindergarten and will start first grade after I test her and make sure she is proficient in all the Kindergarten subjects. She is reading the BOB books well and I would like to see her start on some more advanced books but, I don't want to stress her out. Anyone have any reccomendations? Addie is doing so well with walking! I am so proud of her! She is taking the initiative to step from one couch to the other now without us pushing her to walk. If she can get this balance thing figured out, I think she might be walking sooner rather than later. I finally got my birkies for christmas from Chris! What an awesome guy! I feel like a REAL midwife now. Well, think I will go practice some suturing in case I need to do it in the near future.

Just a thought,

2009-11-12T00:13:00.002-05:00

Any chance I could wake up and see this tomorrow? Life has been just a little too "real" lately.

I Earned It!

2009-09-07T08:44:00.007-04:00

It's amazing that after almost 5 years I can finally call myself a midwife! I have spent years trying to explain to people what an apprentice midwife is! It's really frustrating because they don't usually understand that you do all the same things a a regular midwife and you don't get paid for it. Here I am though and now I can buy myself the two treats I promised myself I would get if I ever graduated. 1. A shirt like this (see picture on right) It feels good to have earned the right to wear it! 2. A pair of REAL Birkenstocks. If omly my preceptor hadn't bought the ones I have been eying for 4 years just about a month ago! I may still buy them anyway. It's not like we are ever around each other now anyway. But, just for fun, here is a pic. It is so hard to see these two things and know that if I want them, They are MINE! (sorry they probably don't mean anything to ya'll just, the promise of these kept me going when I had 7 births in 6 days last year!) I am done!!!! I am a Certified Professional Midwife!

Addie's Trip to Vanderbilt

2009-08-01T15:42:00.006-04:00

Addie made her yearly pilgrimage to Vanderbilt for the Angelman Natural History Study this month. Boy was that fun! NOT! But we did get lots of interesting info and the news that Addie is doing remarkably well. Which we of course love to hear. Anyway, enjoy the pics!

Placing the EEG wires.
Addie's hair and the aftermath of the EEG goo.

The Hospital Room

Getting Sleepy (too bad that didn't last longer than an hour out of the 12 we were supposed to do)

Stolen Entry

2009-06-07T07:11:00.002-04:00

One of the parents on the AS forum wrote this. It is so amazing to me how someone I don't know can pretty much sum up our lives with Addie. Sometimes I think all the kids with AS are just long lost cousins.

My brother is awake now. It’s three in the morning and four-year-olds sleep at three in the morning – except my brother; which means that most people are sleeping except my brother, and my parents – and sometimes me. Because “now” isn’t some random night when some little boy has had a nightmare or has caught some illness, “now” is any night of any week in any month from the day my brother came home from the hospital through today and onward - to days unknown. His body doesn’t produce the sleep stuff, melatonin, the way everyone else’s does. And so, it’s three in the morning and my brother is wide awake.

My parents aren’t. They haven’t been “wide” awake for four years. They live in that place between waking and sleep in a routine choreographed and rehearsed in worry, duty and exhaustion. Like any parents of a newborn will tell you, sleep and rest and sanity are like dreams – except my brother is not new, and the dreams have become distant and unlikely. They shuffle and spin from doctor to doctor, from therapist to therapist, and from hospital to hospital in search of answers, questions, and information. The story of my brother that used to quiver their voices and water their eyes has become so over-told to neurologists, ophthalmologists, orthopedists, physiologists, pediatricians and doctors-on-call that the delivery is robotic; it takes a lot more to break their hearts now.

Now, the heartbreak comes in little snippets of sequestered tears shoved behind closed doors. Hope is what you have when fear is where you live – my parents have nothing but hope. They are tireless in pursuit of betterment, education, therapy, mobility, communication and a cure; all of which are struggles, some of which are impossible.

My family is strong, but not infallible. My mother contends with my brother for numbers of doctors – and prescriptions. She leads the charge in a fight that cannot be won, but can so easily be lost. And every time my brother has a seizure or hurts himself her soul aches to fix it – but she can’t. Nothing can. Not money, not doctors, and not prayers.

My brother is tenacious. For six weeks his brain seized constantly – he was confused, disoriented, tremulous and scared. He also re-taught himself how to crawl every morning, dutifully re-learned how to play with his favourite toys, and found time to reacquaint himself with his sister. He would fall flat on his face, convulse on the floor and still never forget to smile when he saw me. He forgot how to crawl, how to babble, how to eat and how to swallow – but he never forgot how to smile when he saw me. He has blood tests and leg-braces and eye-operations and excruciating cramps – but he has never forgotten how to smile when he sees me.

At first it was here and there. A well-intentioned woman in a grocery-store line asking his name and deciding he was shy because he would not respond – my parents too aware of how crushing it would be to tell her he could not speak, and too afraid of the follow-up questions. Next it was busy-bodies in the park watching him walk as he held hands when he should have been walking on his own and writing it off to “late-blooming”; but you could see the moment at which they understood and then felt shame for saying anything at all. Now it’s a nosey dog-walker who diagnoses my brother from a bench announcing that their nephew/niece/cousin/brother has autism, cerebral palsy, or something – but never the same thing. And they go on to tell us like it is and what to do and how to help and where to go and it requires an unyielding understanding of good intentions for my parents not to either sob uncontrollably or assault them – but my family is strong.

My mother’s heart breaks once more every time her mother says how sorry she feels that our family has to go through all this, and it breaks again when all her father ever wanted to do was to teach his grandson how to drive a tractor and pick a guitar but in his eyes she sees that he knows it will never be. My father’s heart sinks when he remembers his own childhood and he wants so bad to give that all to my brother but can’t. And it sinks a little more when he remembers that he can’t make it all better, either.

But then Mom comes home from a doctor’s appointment or therapy; but then Dad comes home from work or from a meeting; but then I wake up from a nap or come back from a trip – and there’s my brother, smiling when he sees us.

All of the pain, all of the frustration, all of the confusion, shame, exhaustion and all of the heartbreak flies right out the window when we see my brother’s smile, and hear him laugh, and watch him bounce off down the hallway on his way to make trouble for whatever unfortunate toy he’s going to chew up next.

It’s easy to feel sorry for all the great things my brother can’t do, and easy to feel bad for all the horrible things that seem to happen to him – it’s easy to catch myself feeling cheated for all the conversations I will never have with him and easy to be sad for all the milestones I am going to hit alone. My brother is joy personified, and nothing is easy for him. He earns every bit of his happiness, and I would be a fool not to learn everything I can from his example.

My brother is awake now. He probably just had a seizure and is scared and confused. He probably is thirsty, but he can’t remember how to drink. He probably hasn’t slept much and he’s probably lonely. He might even be a little sad – we just can’t be sure. But there is one thing I know for sure – when we open his door to bring him his water and give him a hug and my parents silently wonder what the future of our family is in their sleep-deprived daze at three in the morning - even at three in the morning! - my brother will be smiling when he sees us.
_________________
Father of Edison - one of the two greatest children on earth.

Humbled

2009-03-31T15:08:00.003-04:00

I am so humbled by God. Truly just wanting to fall on my face in front of him for his mercy. To start off, Addie has been sleeping in our room since she was born. We felt like that was the best way to keep her safe. As she has gotten older, she has gotten so big and she is growing out of her crib. Then, last week she broke the front door off her crib. Oops! So, I have been researching different types of beds to keep her safe. I began with this webpage that listed a bunch of different beds other angels used. But, truthfully, I felt like alot of them looked too much like cages for my comfort. So, then I tried looking up different manufactured beds. That's when I came across the Sleep Safe Bed
This bed looked great! It had very high rails with windows. It wasn't short on style either (at least among these types of beds) Well, on their website, they were offering a contest. A chance to actually in one of their beds valued at $8,500. Guess what, WE WON!!!!!!! No kidding, we actually one the giveaway for this quarter!!!!! I am so grateful. They were so nice and so helpful! Addie will be receiving the Sleepsafer model bed in 4 weeks. We didn't have to pay shipping or anything!
So, Angel friends go enter their contest! They are giving away a bed every quarter. If you don't win the first time just try again! I will be sure to post pictures when we get some!
What an amazing God we serve!!!!

Beautiful Homebirth Pictures! (warning: some nudity)

2009-03-28T23:25:00.003-04:00

Make video montages at www.OneTrueMedia.com

Sorry it's so big, I couldn't figure out how to make it smaller. It's still an empowering video though.

Handicapped Acessible?!?!

2009-03-08T15:43:00.005-04:00

This post should be short as I all need to do is vent a little. I am a mom who works.. Catch that? A mom FIRST and a person who works next. My babysitters are homeschooled girls who watch the church nursery on Thursday mornings while our church has it's MOM's weekly group meeting. So, I love the MOM"S group, almost all of my friends are there every Thursday. Drinking coffee, eating and just generally encouraging each other. I try not to ever put Addie in the nursery because I feel like I shouldn't put that much responsibility on a nursery worker who didn't volunteer for it. Consequently, Addie has maybe stayed in the nursery twice in her whole life. I haven't worked on a Thursday in a very long time. But, this Thursday I needed to be at work before my babysitter was finished working at MOM's. So, I put Addie in the nursery (mind you only 45 mins before they were going to be finished) and went back outside to get her diaperbag. When I came back into the nursery there were 4 women, 4 babies, and Addie. One woman was talking to all the others and she stopped when I came back in. So naturally, I immediately know that she is talking about Add. So I calmly ask, "Is there a problem?" To wich the lady answers, " Well, we just have to REALLY watch her because she is getting to the other babies". Oh, well excuse me! I am sorry that my handicapped child can't walk yet and so she is excluded from the room where the children are her age. I am sorry that she is trying to hug her friends whose mothers bring them over to our house to play with Addie! I am SO SORRY that you the nursery WORKER might actually have to WORK! So, I just picked Addie up and said, "No Problem, I'll just take her then." But, by the time I got out to the hall I was Fuming. The last place in the whole world my disabled child should be rejected is at church! Needless to say, I was very late for work that day.

Warning, I am Debbie Downer today.

2009-02-08T11:27:00.007-05:00

I have been neglectful of my blog lately. Mostly because I have just been to busy to blog. It hasn't been any one thing in particular just life in general. I am going to make a futile attempt to catch up on what's been going on with us lately.

Addie~ Addie has been doing really well in physical therapy. She is crusing around on everything and will occasionally take a step or two if no one is looking. She needs new leg braces but the last ones were $2,428 and we owe $1300 still. So, as much as she needs them I doubt we will be getting new ones any time soon. We have a meeting with the wheelchair guy from Atlanta on March the 9th. She has started keeping her tounge in more and can drink out of a certain kind of sippy cup. The speech therapy has been interesting. I absolutely adore Addie's therapist but, unfortunately Addie does not. So, consequently therapy on Wednesdays is awful. She has been blowing raspberries and that is a BIG deal. At this point she still hasn't had any big seizures and for this I am so grateful. Please continue to pray fro Addie's health she has been so healthy this year I know it is the Grace of God that keeps her this way.

Gracie~ Has been learning how to read! I have been using the Horizon preschool program with her and she seems to be doing well. She has been writing her 2's and s's backwards and I haven't quite figured out how to fix that yet. Chris and I would like to put her into T-ball this season but we aren't sure that it will be an option. She would really like to play and I think she would probably be pretty good at it(Of coursr I am a little biased).

Michelle(me)~ I have been working constantly on my paperwork for NARM . It has been such a long process and it almost feels weird for it to be coming to an end. Each time I fill out a name of a woman whose birth I was privileged to attend, I can picture her birth and her triumphant story. It is such a blessing to be able to serve the Lord this way. We have been struggling financially for a while now. With all of Addie's medical bills, the groceries, the house falling down around us etc... It feels like we won't ever be on top of things. Each time it seems like we might get ahead, something else goes wrong with the house. At this particular moment, we are having septic tank issues and we can't even pay someone to come out and look at it. Our neighbors are complaining. This is a VERY bad place to be. I know lots of people are having problems with money right now, but it certainly seems compounded when we have all these medical bills on top of it. If anyone has any ideas, I am all ears

Chris~ My wonderful, sweet, husband. He is currently placing reservoir engineers and deep water geologists for oil and gas. Unfortunately because of the economy no one wants to change jobs.
He tries so hard to make ends meet for us. It just isn't working. I don't want to be cynical but I know it is so hard for us to watch everyone have their healthy normal kids and have no struggles with money. He knows that the Lord always provides and so do I. But I am gonna tell you, it doesn't stop the heartache that happens when you have to tell your kid that they can't go to a birthday party because you can't afford to buy a present. I hope that both he and I learn and grow from our current situation. When/if we do have some extra money we will appreciate it so much more...right?

If you have time, please pray for our family. This is just really hard.

Membership invitation

2009-01-04T12:00:00.000-05:00

To You, My Sisters

by Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and homeremedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Peri Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and
our special children, reach for the stars

Things I Never Considered

2008-12-18T09:48:00.007-05:00

When I started on my path to midwifery, I considered lots of things. I thought about late nights, missing my kids birthdays, no vacations,etc... But there are a few things that never even crossed my mind.

I never thought about how it would affect me or my family when I attended a birth that didn't go as planned. Maybe the mom just didn't get what she wanted or maybe she needed a c-section who knows? The way the birth turns out affects all of us. I might feel like a failure because I couldn't give her what she wanted or she just didn't get her VBAC. Then, I whine to my husband and I am a little testy with my kiddos. I try not to be but it's just impossible.

I never thought about how much money it was actually going to cost us for me to finish my apprenticeship. Here I am a few years down the road and I am just so thankful that even when I spent $600 on gas in ONE MONTH(!#*!#). My husband supported our family and never asked me to quit. (I must have the best husband ever!)

And lastly I NEVER thought I would have to deal with death. If you don't already know this about me, Here is your chance to gain some insight into my brain. I am dead people phobic. When we have to go to a funeral and it's open casket, I can't go in the room. It's not about being afraid to die, I just get uncomfortable around a person whose spirit has already left. So, in the last few months I have had to deal with something I never thought I would have to deal with. I am learning to not be afraid and to be strong for these women because it isn't about me. I want so badly to be the Lord's humble servant and it has actually been a blessing to attend to these women who are doing something I could never do. Saying goodbye to their babies.

I have been truly humbled by this experience. There are some amazing women in this world. The Lord has given me the grace and strength to attend them in their hour of need and for that I am so grateful.

On that note there is a photographer who works for Now I Lay Me Down to Sleep
here who is absolutely amazing! Her name is Diana Simpson and she is doing an awesome thing for these parents! She makes it possible for these parents to remeber their babies forever. I am thrilled to know such an awesome photographer!

The funniest thing I've ever seen!

2008-12-05T13:31:00.001-05:00

Send your own ElfYourself eCards

She's 5

2008-12-01T12:04:00.004-05:00

I can't believe it, Gracie turned 5 last month. It is just so amazing to see her grow up to become such a smart young lady. Chris and I asked her what she would like to do for her birthday and she decided to go to the Creative Discovery Museum . She awoke on her birthday to a balloon filled bedroom and was then treated to a chocolate chip happy face pancake! We then went to Chick Fil A for lunch and then on to the CDM for some fun! Later that night my mom came over and gave her an American Girl doll for her gift. She was so happy. Here are some pics from her day!

Photo and video editing at www.OneTrueMedia.com

When it rains, it pours

2008-11-11T10:03:00.001-05:00

Your new President!

2008-11-05T09:12:00.002-05:00

Here he is! Now, lets all sit back and watch as he makes it okay to end millions of innocent lives.

NOBAMA!

2008-10-21T23:10:00.003-04:00

If you are even thinking about voting for Obama, Please watch this video. They are killing babies that are viable. They could live at this age and weight! Most of all they are justifying killing babies who have birth defects like down syndrome! They are killing babies like my daughter! How anyone could vote for such a thing is so beyond me.

I DID IT!!!!

2008-10-05T10:22:00.004-04:00

Well, Guess what? I did my first birth all by myself on Friday! (and it wasn't so bad) I got a call about 5:30am from my preceptor and she said that one of the girls we did a homevisit for on Monday was in labor. It was her first baby and My preceptor was about 7 hours away so, I wasn't worried and I figured she would make it in plenty of time. Well, I was wrong. I got to their house about 7:45am (after driving in circles a couple of times) and the client was laboring beautifully. She was 6 or 7 and moving pretty fast. She was handling her contractions so well that I thought it might still be a while. So, I called my preceptor and she decided to call another midwife who was closer to come be with me. About 20 minutes later the client felt pushy and she was almost complete. She pushed for about 45 minutes or so and then delivered a beautiful 7'15oz boy. The other midwife arrived about 10 minutes after the baby was born. I have to admit for years now I have wondered when this was going to happen. I am so blessed that the Lord chose to give me a quick, easy, delivery with no complications for my first birth alone.

Addie's Summer

2008-09-27T11:00:00.000-04:00

Photo and video editing at www.OneTrueMedia.com

A Good, Swift Kick in the.....

2008-09-20T23:14:00.002-04:00

So, Here it is almost the end of September and I do believe that God is trying to send me a message. I have had three new doula clients this month decide to have a homebirth. This is really great and I am truly thrilled! Except that it's giving up alot of income for our family. I think God must be trying to hit me where it hurts...lol the pocketbook. The truth of the matter is, I just did my last continuity of care client on Thursday. That means with just a few more loose ends to tie up, I could be ready to take my NARM exam and become a CPM. These three clients could potentially all be midwifery clients if I had my license. Debi has been trying to push me out of the nest for some time now and I have been taking my time. Mostly because as you all know, The nest is a comfortable place. I don't feel quite ready to take my exam, I feel the need to study more. Maybe I will be able to focus on that once I turn in my paperwork for NARM's PEP program. This is exciting and scary all at the same time. I have always felt called by the Lord to do this. Before each birth I pray that he will use me as his humble servant. I pray that my hands will only do his work. I think now I will pray for his wisdom and peace as I begin this new chapter in my life.

What Children Remember

2008-09-04T16:11:00.004-04:00

What do you remember from your childhood? Was it the food you ate, the places you went, or the people you loved? I remember lots of things. But mostly I remember going to some really fun places. So, this past weekend Chris and I decided to just have fun with the kids. We went to the Tennesee Aqaurium, Lake Winnie, coolidge park, and we had his mom come for a visit. We had a blast and I think the kids did too. Addie rode everthing she physically could even the scrambler! She laughed and loved every minute of each ride. I put the pictures of all of us on the frog hopper so you can see the sheer terror on my face and the joy on the kids faces (mommy does not like heights). Anyway Gracie also rode anything they would let her. At the very end of our day, I took her on the matterhorn(very fast ride that spins in circles). As I was holding her she said "mom, this is SO much fun" I hope she remembers that trip forever. Anyway, here are some pics enjoy!

Tubing with a 4 year old....

2008-08-20T14:27:00.005-04:00

We went tubing down the Taccoa river on Saturday. We had a great time. We would have had an even better time had Gracie not been so scared. We decided to go because it was my brothers last full weekend at home before he heads to Columbia I really wanted to spend some time with him and I know he likes to be outdoors so I thought this would be perfect. Wrong, he rode all the way there with us and the decided he didn't want to tube so, he sat in the car and read a book. Well, every party has a pooper! So, the rest of us, Me, Chris, Gracie, and Happy ( My stepdad) all put on our life jackets and hopped on the bus for a ride up to the drop off. When we put in our floats, Chris being the graceful one in our family, fell in and got his foot caught. So, I jumped in after him. ( I lifeguarded for a few summers in high school and college) When we both came up, we couldn't breathe. That water was so cold it took your breath away. Needless to say, it scared Gracie half to death. We finally got on our floats and headed down the river. Grace kept crying and saying she wanted to go home and we kept trying to explain that tubing was the only way home. When we got to the pull out she seemed to have had a good time but she did say " Mommy, I NEVER want to do that again"

Just For Dad

2008-08-12T11:51:00.002-04:00

My dad wanted to see pictures of Gracie in a yellow outfit that he gave her so, I am posting these just for him. Love you Daddy!

Medically Necessary

2008-08-09T13:29:00.005-04:00

For those of you who knew that Addie was supposed to be spending the weekend in Vanderbilt Hospital, I hate to dissapoint you but we are not there. Our insurance(or lack of, in this case) would not pay for Addie's 24 hour EEG. We were having the 24 EEG at the request of Dr Paolicchi who wanted to prove by an abnormal EEG that Addie was having enough seizures to warrant putting her on the medication (clonazepam) we asked for. So, on Thursday after going to the St. Jude Rodeo I stayed up till 2 am packing for our weekend in the hospital. Then we got up at 5:30am and drove to Nashville. We did some developmental testing at the Kennedy Center for the Angelman natural history study. When we got finished at 12:00noon the hospital called to say that we wouldn't be doing the EEG because our insurance wouldn't pay for a Tennessee hospital because we live in Georgia(the state line is quite literally our backyard). Even though, they pay all of Addie's physicians in Tennessee and they also paid for Addie to see Dr. Paolicchi. Well, the no from the hospital wasn't enough for me, So I called our insurance company and I got an entirely different answer, they said, "this procedure is not medically necessary". So, here is my question for Amerigroup," If my daughter was to die from the seizures she is having, would it be okay if I sued you for not allowing us to get the anti convulsant medications that she needs.?" Just curious if the procedure would suddenly become "medically necessary if I rephrased my question in that way.

Summer Fun

2008-08-07T11:52:00.003-04:00

Blueberry Farm

2008-08-07T11:43:00.004-04:00

Bad Blogger

2008-08-07T11:32:00.002-04:00

Okay, so I admit it, I have been a bad blogger. It has been a MONTH since I last blogged. I didn't really mean for it to go that long it just sortov happened. We have been so busy, I just haven't had the time to blog plus, I put my computer on the hood of my car and drove off. That certainly hasn't helped matters. (BTW it works just fine now) So, I had almost two weeks with no babies born and now the chaos has ensued. I had a lovely birth on Saturday with a doula client who was only in hard labor for 45 minutes(that was awesome). Then I had another birth this week with a couple who came to me originally for doula work but decided to have a homebirth. Yeah for them! It went so well! Oh I just love butter births!
On an entirely different note, my cousin is running for school board today in district 7. So if you live in East Brainerd Please make your vote count today and go vote for MICHAEL DZIK.
Well, that's all for now. I will try and post some pics of our summer fun soon.

Happy Birthday Addie!

2008-07-07T08:54:00.004-04:00

Addie turned 2 on Sunday. Here are a few pictures from her birthday.

Vacation

2008-06-23T18:21:00.002-04:00

Anyone else with a special needs child out there? Since January I have seriously felt the need to take a vacation from life. Our lives our constantly filled with DR's appointments, therapy sessions, seizures, crying, paperwork, and worry. I feel the need for a vacation from real life. Does anyone else feel this way or is it just me? The truth is, even if we did go on vacation, we still wouldn't get a break from all this reality. We would still have to worry about whether or not Addie was okay but maybe get a break from the rest of our reality. Chris and I have not been on vacation together just the two of us since our honeymoon. We did go to the beach one summer with my parents when Gracie was 7 months old. I really wanted to take the girls to the beach a while back so even though Chris couldn't go, I took the girls to the beach with my Friend Tracey. We stayed at a wonderful condo on Navarre Beach. Probably one of the best vacations I have ever had. So, all this said, my new goal is to go on a vacation. A real family vacation to the beach.

Waterbirth

2008-06-10T17:42:00.004-04:00

I am not much on waterbirth. Oh yes, If I were the momma that's exactly where I would want to be but, as a midwife (student) I just don't like them. The babies are bluer for longer, there are all kinds of things floating in the water (if you get my drift) and water fills my gloves and makes it hard to feel what I am doing. But oh is it cool if you are the momma! Last night (this morning) I caught my first waterbirth baby. She was having some humdinger contractions and she was having a hard time staying on top of them. Put her in the tub and voila! she feels so much better and has a baby like 20 minutes later. The baby was little, 6 lbs 3oz and covered with vernix. She pinked up and looked great almost instantly! That was this moms first waterbirth. My guess is that she will definately be having another one!

Free Movies

2008-06-08T09:12:00.003-04:00

Okay, so for most of you that know us, you know that we have lived without a TV for almost a year now. It has been interesting to say the least. It wasn't our intention to live without a TV, it just sortov happned that way. First when we lived in our old house we had one in our bedroom and one in the living room. Then when we bought this house, the one that was in our bedroom broke. So I thought, " Well that's good, we didn't need a TV in the bedroom anyway." Then, we couldn't afford to have cable so we just had 1 TV and a DVD player for a while. Then finally, the DVD player just gave out. That was the end of TV in our house. It really isn't all that bad but, occasionally I feel very disconeccted from the "real" world. Well, here is our chance to become recconected with the world again and see some movies that we haven't seen. The RAVE theatre is offering a Free Family Film Festival. YEEHAW! Here is the schedule...

June 10-11 Mr. Magorium's Wonder Emporium 10am
June 17-18 Alvin and the Chipmunks 10am We will not be seeing this it had too much suggestive marteial in it
June 24-25 Bee Movie 10am
July 1-2 Shrek the Third 10am
July 8-9 Firehouse Dog 10am
July 15-16 The Pirates Who Don't do Anything 10am
July 22-23 Charlotte's Web 10am
July 29-30 Surf's Up 10am

Therapy can be fun!

2008-05-25T21:54:00.003-04:00

Here are a few pictures from Addie's therapy session last Wednesday. We are at North Georgia Pediatric Therapies. Addie doesn't always love therapy but, the ball pit can always make her smile.

Special thanks to Anna for the pics!

Judgement

2008-05-23T18:40:00.006-04:00

I have known another woman for quite some time. And in this time I have always gotten a sort of different feeling around her. A feeling like I shouldn't just say whatever is on my mind. As most of you know I am a very honest person sometimes to my own fault. I just feel if I am honest with everyone, I will get the same in return. But, with this particular person, I feel like if I tell a story about something that happened with my children or a story about a birth that just didn't go the way that she thought it should go, that she is placing judgement on me. As mothers and friends, we have no right to judge eachother. Not a single one of us is perfect and we can only do what we think is best for our family and our clients at that exact moment in time. I have to tell you though it has taken me a long time of knowing this person to finally put my finger on what was going on in that friendship/relationship. JUDGEMENT. Sometimes I can be a little nieve when it comes to people I guess. But, I can't tell you how nice it is to finally figure it out. Another Midwife, "Kneelingwoman" Just wrote a post on this. In it she talks about how she was a La Leche Leage leader and she used to beleive that every woman could breastfeed if they just tried hard enough, that is until she had a special needs son. Now, she knows different, she no longer passes judgement when she sees a mother bottlefeeding. We could all learn a little from this very smart midwife.
On another note, I attended a fabulous sucessful VBAC yesterday. I love that exact moment in a VBAC when the baby slides out and the mother is truly triumphant in her endevor. Yeah for her!

The Walk A Thon

2008-05-19T10:48:00.003-04:00

These are some of the pictures form the Angelman Syndrome Foundation Walk A Thon in Nashville, Tennessee. I hope to post a video soon. Enjoy!

It's the Little Things...

2008-05-06T11:46:00.003-04:00

When our first daughter Gracie was born, I thought raising a child was hard, and everything was "work". To get her to walk we used jellybeans as a bribe and I just thought it was so terribly hard to coax her into taking those first few steps. Now, I know better. It really is the little things that count. For Addie, everything is work. The things that come so naturally to a typical child take months or even years of practice for her. I never celebrated when Gracie mastered the pincer grasp or when she cruised the furniture. But you had better believe that every little task that Addie masters is a huge big deal to us. Pulling up on the couch is now a daily occurrence as well as climbing on the furniture (see stargazing post). With a typical child I might discourage the furniture climbing but with Addie we CELEBRATE! Funny how your perspective on things can change. She continues to surprise me everyday with the new things she can do. She now bangs her hands on her tray when she wants something (more food...what else?) She also will give kisses now although they are the open mouth licking your cheek kind, I can't help but love every minute of it. I just smile and reapply my makeup for the 100th time that day.

Our New Montage

2008-05-05T15:42:00.001-04:00

Photo and video editing at www.OneTrueMedia.com

I thought I would post this here. I made a new montage for our fundraising page. I hope it works!

Gracie's Special Day

2008-04-25T20:08:00.007-04:00

It all started with a phone call on Tuesday from Alicia. (leader of Grace Baptist moms group) She was offering to watch the kids one day this week so that I could have some time to myself. So, instead I decided that it might be fun for Gracie to have a day with mommy all to herself. First we ate lunch at Steak-N-Shake. Gracie had chili mac and a Cookies n Cream milkshake. That, along with my undivided attention, and she was in heaven. We had a lovely lunch and then we headed to Libby Lu for the ultimate girl time. She loved it! They gave her a head to toe makeover complete with fake pink hair. Then as if the pink hair isn't enough to make
people look at her, they have to go out into the front of the store and do the chicken dance with music blaring. While she was doing the chicken dance, I was snapping away with my cell phone and another nice family offered to take some pictures for me and e-mail them to us. I really need to buy a camera. I feel like I am missing out on so much. The last pictures I have of the girls are from when Addie turned one. Oh well, off to craigslist to search for a camera...

Stargazing

2008-04-22T00:34:00.002-04:00

Full Moon Nonsense?

2008-04-20T19:46:00.002-04:00

Whew, What a busy week. So far this week I have been to three births and there's another girl in labor as I type. So, if you didn't believe in all that full moon nonsense, You probably should. I spent one afternoon teaching a placenta lesson to 8 children who just got a new baby brother. It was so great. I also spent last night helping a family have their third child and what made it so special is that I have been to all three of their births. Off to bed for now, Because I am pretty sure that I will be up again in a couple of hours.

"coffee is my friend, coffee is my friend, coffee is my friend, coffee is my friend, coffee is my friend "

AFO's (Ankle and Foot Orthotics)

2008-04-03T09:36:00.006-04:00

I was so excited to get Addie's new stylin AFO's! Then I picked them up....And while they are "stylin" my little Houdini has probably worn them for all of 5 minutes in the last week. First of all she curls her toes and slips right out of them. Then as if that wasn't enough, last night I could hear her in the backseat, rip, rip, rip went the velcro until she undid the straps. Smart girl. So, we went to Stride Rite to get her new shoes so that she couldn't slip the AFO's off. I didn't like the pushy sales girl so we left, went to new balance ( no shoes in her size, 7 1/2 extra wide), left there went back to Stride Rite where praise the Lord, the pushy sales girl had been replaced by a girl who had an autistic son who wears AFO's. She was awesome, let Addie try on every shoe I liked until we found one that worked. Yeah! So we bought both girls a pair of shoes ( they were buy one, get one 50% off) and off we went. I though our problem was solved. So this morning, Addie's PT comes over and we get her AFO's and her shoes on and what does baby Houdini do, She slips them right off! So, back to the Doctor for some new straps in the shape of a figure 8. Maybe this will work who knows.

Happy Birthday To Me

2008-03-18T22:16:00.005-04:00

Ha, Ha, Ha, what a joke. I have been to three births since Saturday and I still have two more to go. I was doing okay until last nights birth and by the end of the birth I felt icky. So today I stayed in bed all day. Chris hired a sitter and she watched the kids all day. An excellent birthday present! I am feeling a little better now. I got to attend a birth on Saturday where they had a special needs son. It was a blessing for me to see how sweet and wonderful that little boy was. He was super excited to have a new baby brother too! Then the birth last night was one of those great ones where I get to leave after the kiddos go to sleep and I am back before they wake up. Awesome. I can't believe I will be 29 tommorrow. Next year will be the big 30. At one point, I made a promise to myself that I would be skinny by the time I was 30. We'll see what happens, but I wouldn't hold my breath...lol. The fundraising for Addie is going better than I expected it to go! Thanks Abbey and family for helping support Addie! I am going to bed now after drinking some nighttime theraflu I don't have much of a choice.

I am my Favorite Charity

2008-03-11T21:26:00.004-04:00

I have said this for years when I had to donate money to this or that. Now I can actually put it to good use. Truth be told, Addie is my new favorite charity. Anything I can do to help with finding a possible cause for Angelman Syndrome. So, if you look to the right you will see a lovely little fundraising widget. Feel free to add this to your own blog or website and help us raise money for the Angelman Syndrome Foundation . We will be joining others to raise awareness about AS on May 17th 2008 in Birmingham, Alabama. If you are feeling particularly ambitious you could join our team and walk with us. Together we can make a difference in the lives of people with AS!

A Retreat from the Retreat

2008-03-04T21:43:00.002-05:00

I attended a moms retreat in Gatlinburg with about 25 ladies from our church over the weekend. I had a wonderful time but I came back very early on Sunday morning so that I could get some sleep. Plus I just couldn't stop worrying about the kids. I love getting away every once in a while but usually my work is my retreat. I love what I do. Besides, 25 women in one house can get a little stressful. I spent the last night of the retreat watching The Business of Being Born with an O.B. nurse from Erlanger and a girl considering a homebirth. It made for some very interesting conversation as you can imagine. On Thursday we go to have Addie cast for her AFO's. I can't wait. We picked out the purple butterfly pattern. I hope they have that one in stock. I will be sure to post a pic as soon as she gets them. Oh, on a side note, my website seems to be up and running for now. I actually found it on google today. Yeah!

THE GOOGLE ADS

2008-02-20T22:40:00.001-05:00

I just thought I should make sure to say that the google ads are not the ones I would pick!

Back In The Saddle...

2008-02-20T22:29:00.002-05:00

Well we are officially back in the saddle again. This week started off with a postpartum visit for me, dance lessons for Gracie, and a visit to the Martins for Addie. That was all on Monday. Then off to kindermusik and therapy all day today. Sometimes I really feel like Addie is missing out on her childhood because all we ever do is therapy. I spend half my day doing therapy and the other half cleaning or trying to teach Gracie a little school. Well, hopefully once Addie is walking we can slack off on the PT a little bit. Oh, on another note, I get to go to Nashville on March 7th to meet this woman who specializes in Angelman Research at a fundraiser for AS. It will be at the Bluebird Cafe. I am so excited her son has AS and he is 9 and she used to be a lay midwife! The lord is truly blessing us by putting us in contact with her and the man from New Zeland who found her for me. Blessings!

Long Time, No Blog

2008-02-15T22:19:00.004-05:00

So what's it been, like a week or so? Let me see if I can't go back to the beginning..... It all started LAST Friday when my parents took Gracie to see a musical, Chris was on his way back from North Carolina, and I offered to give a girl at my moms' work a ride home. As we were pulling up to where I was dropping her off my phone rings and someone is having a baby...quickly (it seems). So, I frantically look through my phone for babysitters numbers and that's when it hits me that I just changed phones and I don't have any numbers in this new one. So I call my mom to see if they will keep Addie and of course they won't. So, then I try to call one of my friends who lives near the woman who's in labor. Thankfully, one of my usual babysitters is keeping my friends kids and she offers to watch Addie too. YEAH! Crisis averted for now. I drop Addie off and head to what I think is going to be a fast birth....Turns out the baby was born on Sunday, hardly what I would call a precipitious labor. Anyway, mom and baby doing well and I who have had no sleep and not seen my kids for days head home at 5:00pm on Sunday. Then, I sleep away most of Monday and wake up Tuesday to two kiddos with 102-103 fevers. Oh boy! We have the flu. Gracie does well and is mostly over it by today. Poor little Addie on the other hand, she starts dropping her head while she's crawling and sort of shaking and falling on her face. So, I go online and ask some other parents whose kids have AS whether this is normal and I find out that she is having Sezuires. YIKES! I am a bad mom, I had no idea that these were sezuires. They are called atonic or drop sezuires. So, we slept last night because I didn't feel that she was in any real danger and then this morning I got up and called the neurologist. After 3 hours he still hadn't called back and in the meantime Addie's therapist had been here and she felt like we should take her to the ER. Well I hate the ER so I took her to the neurologist office and tried to talk with someone. He was not there and the nurse would not see us, fast foreward.... after watching some kid puke in a bag in the lobby we finally get a double room in the ER. It's okay cause it's empty. Not for long, next thing you know they bring a kid in off the ambulance with pnuemonia and croup and they put him in OUR ROOM. Now, I know that Add is sick but not that sick. So, Chris just picks her up and walks out of the room. I follow with all our stuff. They get us a new room and we finally get a physicians assistant. She comes in and gives us an appointment with the neuro for two weeks from now. YOU MEAN, I WAITED 5 HOURS IN THE ER TO GET AN APPOINTMENT I COULD HAVE GOTTEN ON THE PHONE?!!!! Wow, I didn't even know they could do that to a little kid. Anyway, so if you all have been wondering why I dropped off the face of the earth that's why

Settling In

2008-02-03T08:41:00.000-05:00

I still don’t know what the normal reaction to hearing that your baby has a lifelong disability is. I thought I had gone through some of the stages already and that I was prepared to deal with the actual labeling of the disability. But as life sometimes proves you aren’t always prepared as you think you are. It’s like having your first baby. You read all the books, you watch a baby story a 1,000 times, and you take some lame childbirth preparation course. These things all make you feel well informed and very prepared you think ,”people have been doing this for thousands of years how hard can it be?” . Ha, ha , ha…..then the first few contractions hit and you think oh yeah I can do this. Then by the time you realize it, you are flat on your back, hooked up to a million machines, and wondering where in the world your perfect birth went. The truth is that no matter how much you prepare, you still have to cope with each contraction as it comes and you can’t know what it feels like until you have actually been there. So, here I am wondering where my perfect kid went. Don’t get me wrong, Addie is the perfect in her own right but, all these feelings are just so weird some moments I can actually feel god holding my hand and guiding me to what he wants us to do with this and then other moments I honestly feel like this is all a really bad dream that I can’t wake up from. Sometimes the reality of it all hits me so fast I feel like I could just throw up. (just like birth again) It’s such a strange place to be. So I guess we’ll just settle in all over again and see where god wants us to go.

D-Day (Diagnosis Day)

2008-01-31T16:01:00.000-05:00

Well, yesterday was the day. We went to see Cathy Stevens (the geneticist) I was of course late and by the time I got there Chris was already in a room. We sat down and she came in almost immediately. Chris was standing at the exam table still getting Addie dressed from where the weighed her. I think Dr. Stevens may need to work on her bed news delivery a little although I guess there is no easy way to tell someone that their child has a lifelong disability. Chris was still standing up dressing Addie and she just says, “ Addie has angel man syndrome”. Just like that. Okay so for those of us who are not geneticist what does that mean? It means that out of 15,000 to 20,000 people our daughter has this syndrome. So, there are the odds 1 in 15,000. Wow, wonder why God chose us to receive such a special little girl. I hope I can do great things with this opportunity. So, what does this mean for Addie? It means that she will be happy a lot of the time. That’s one of the main symptoms. Also, she will probably begin to have seizures sometime around the age of three. Dr. Stevens said that most angel man’s kids are not ever verbal. She also said that they have ataxia (a balance problem). This makes it hard for them to walk and so sometimes the use walkers and /or a wheelchair. We’ll have to see how that all pans out. I am so grateful to God for the experience of raising such a wonderful child.

Go Go Gadget boobs

2008-01-29T19:53:00.000-05:00

Hey have you guys seen this? now, if only I had Go Go Gadget boobs, I would never have to get up off the couch! yeah. www.mysweetpeace.com I can hardly believe that hey have invented another way to NOT be with your baby.

On a Roll

2008-01-29T18:03:00.000-05:00

Today has turned out to be quite an interesting day. This morning I took Addie to her first Kindermusik class. It's a fun class for Addie but, I did feel slightly stupid when I had to lock arms with another mother and do a square dance. Oh well, it's all in the name of having brighter babies right? After leaving Kindermusik we headed to the audiologist office to have Addie's hearing tested for the third time. But, today was different then the other days because we actually got a diagnosis out of this guy. He says she has "conductive hearing loss" now for those of us who don't speak doctor this actually means that she has hearing loss that can be corrected. Yeah!!!! (I think) Lastly, about 5 o'clock this afternoon Dr.Stephens (the geneticist) office called and said our test results are in. Since we have been waiting like 4 weeks now for a 3 week test this was good news. Now it is my understanding from our previous experiences with her office and from other mothers that if the test is negative they just tell you to come back in a couple of months. Well when she called today she asked us to come in TOMORROW! So, at 1:30 tomorrow afternoon we will hopefully be putting all of this testing behind us and embark on a whole new journey.

I Love Sleeping Babies

2008-01-28T23:05:00.001-05:00

Buffalo and new clients.....

2008-01-27T23:48:00.000-05:00

BUFFALO? Why in the world would I be talking about buffalo you ask, well because I had such a good laugh today that I thought I should share it with you. We got new furniture this morning and Chris was sitting on the love seat ;looking out the window and he said, " I just saw a buffalo up behind Katie's house" and i said Chris honey, there just aren't any buffalo in Georgia. Do you even know what a buffalo looks like? You can imagine where this conversation went until he went outside and realized that the neighbors have a great dane in their back yard......how funny.

On a completely different note, I LOVE getting good recommendations from past clients. I had a girl call the other day and ask me about being her doula she said one of my other clients told her how great I was. Yeah!!! Then when she told me when her due date was we realized it was close to time when I might go on vacation. Well, she said she would have to talk with her husband and get back to me. So, I guess she called a couple of other friends to ask around and they gave me good recommendations too. So I think she and I will be working together soon. I am just thrilled.

2008-01-27T14:44:00.000-05:00

Okay, so this is officially my first blog... I am not doing this because I think that people care about what I have to say, I just thought it might be a nice way to put some of my thoughts down. Yesterday my mother in law came to stay with us this weekend, may I just say that she is always a welcome visitor. Anyone who wants to come to my house and help me do my laundry is ALWAYS welcome. We had a couple of exciting things happen this weekend... We acquired some very nice new living room furniture and the kids also got some bunk beds(ooh another painting project). I am so grateful for free furniture I just can't even begin to tell you. Well, Maybe I don't have as much to say as I thought I did. More later?