Roley Poley Baby

Reagan has been rolling over for weeks. Front to back. Back to front. A skill we have been working on for several months, now. For weeks we have been going to therapy every day. And every day I've told her therapists that she is indeed rolling over at home. And every day they look at me like I'm crazy. So they have continued to practice rolling and accomplishing nothing but pissing Reagan off.

Yesterday we head to therapy, dreading the horrible rolling session at the end of therapy. When all of a sudden...Reagan rolled over! Twice! Hallelujah!! Now do you believe me? Her therapist looked so suprised and said "she finally did it!" What the hell do you mean "finally"? I've been telling you for weeks that she can do it. Now can we please move on to a skill she really needs help with, say, sitting for example?

Reagan mastered another skill yesterday. We've been trying to get her to transfer a toy from one hand to the other for a while and she did it three times yesterday! I'm so excited! It seems as if she has been making progress by leaps and bounds lately. She now picks up toys from the floor. We're still working on a lot of things, but I'm so happy with her progress! She is amazing!

Did I mention that she army crawled? Yes, she did. She did it the day that A passed away. Just a few hours later, as a matter of fact. A friend of ours said that A went to God when she got to Heaven and told Him that it meant a lot to me for Reagan to make progress and asked if He would allow it and He did. That warmed my heart. It may have not happened that way, but I'd like to think it did. A loved Reagan so much and I could see her doing something like that.

So here's where we stand at this point. Making tons of progress, but still pretty far behind. But...she is happy and I think she knows she is loved. What else matters?

Three Weeks

It's been almost three weeks since the fire. Sadly, A died from complications due to the injuries she suffered. I feel so empty. There is a hole in my heart where she once lived. I have thought about her every hour of every day since this has happened. I dream of her every night. I'm saddened by the fact that Reagan will not grow up knowing "Auntie A" like we had planned. She will only live on through pictures and memories. And her son, of course. I plan on starting a journal for the baby. I want everyone who knew and loves A to write in this journal for her baby. He is too young to remember her, and we will have to tell him all about his mommy. So here are some of my favorite memories of A.

She loved hot air balloons. I can't count the times she told me she wanted to take a hot air balloon ride. I had actually looked into booking her one just a few weeks before she died. It was going to be an early birthday gift sometime this summer.

We were at work one night and I had made some Ravioli. I was pouring the soup out when she looked at me and said "what on earth are you doing? That's the best part." I told her I didn't like the soup. She just rolled her eyes and said "you're a weirdo." To which I responded "you hang out with me. What's that say about you?" She burst out laughing and agreed with me.

I remember the day she told me she was pregnant. She had only told her aunt and was waiting to tell everyone else because she was afraid people would judge her for not being married. I burst into tears, but then again, I was pretty far into a pregnancy myself. I had vast dreams of our children growing up together and being best friends just like we were. I immediately starting making plans and getting excited. She brought me back to reality at once, saying I couldn't tell anyone yet because she wasn't ready to be outed. I was about to burst, so I came home and told Tim! But I threatened him within an inch of his life if he told anyone.

During my pregnancy, she told me often how she couldn't wait to be an "aunt". We would talk about all the fun things that we would do with my baby girl, before she got pregnant with her own bundle of joy. Then our adventures turned into a four-some. We were both so excited.

A did not have a potty mouth. So one night at work someone said a pretty horrendous word, and I thought A's head would fly right off her shoulders! LOL She never said anything. She didn't have to. The look said it all!

We talked about the Lord a lot. Did she ever love Him. She is actually the one who got me into church. She would call and ask if I was going and, of course, I'd have some excuse as to why I couldn't go.
I didn't have anything to wear--God doesn't care.
I haven't had a shower today--So sit in the back.
I don't have time to get ready, I'll be late--So come in during fellowship. No one will notice.
She would not let me off the hook. I can't count the number of times I was late for church because she wouldn't let me lay out. I'm so glad she was so tough on me.

A was like my right arm. We worked together, went to church together, she was my best friend. How on earth will I ever make it without her?

My Best Friend {Y3W}

Life can change in an instant. In the twinkling of an eye the life you know can be changed or gone forever.

My best friend, A texted me yesterday morning and asked me to pray for her...she needed guidance. I told her I would and that I loved her as I rushed out the door to a doctor's appointment. She texted me back and said that she loved me too. A few hours later I got another text from her that said she loved me like a sister. I had told myself all day that I would call her as soon as she had time to get home from work. I went on with my day thinking of her several times and hoping she was okay.

My afternoon got away from me. I fell asleep when Reagan took her nap and when I woke up I realized it was too late to call A. It's okay. I'll call her in the morning. I fixed supper, visited with my mother in law and, before I knew it, it was time to put Reagan to bed. As I was tucking her in I heard my cell phone ring. "It can't be too important. I'll call them back." I finished putting Reagan to bed and then went and checked my phone. It was a lady from church. I cheerfully called her back and as soon as I heard her voice I knew something was wrong.

"Have you talked to A?" I hadn't. Not since our brief text session this morning. There had been a fire. A was severely burned. I ran out the door as soon as I was sure she was at the local hospital. When I got there, her aunt came out the ER doors. I asked her how A was doing. "It's bad."

A's aunt is a nurse. A seasoned one at that. To hear those two words...it's bad...coming from her struck fear into my heart. I was briefly allowed to see A before she was airlifted to a burn unit in Nashville. I'll never forget that moment. I stood there looking at my dear friend, badly burned, praying...Lord, please don't let this be my last image of her. I told her I loved her, even though she was unconscious and then stepped aside as paramedics took her to a near by air plane bound for Nashville.

Conversations I've had with A keep replaying over and over in my head. She has a 5 month old son. She had told me that she didn't think she could live without him and she didn't want him to have to go through life without her. He was, thankfully, unharmed in the fire. Praise God.

I woke up this morning and my first thought was "what a horrible nightmare". Then I realized it wasn't a nightmare. At least not the kind you can wake up from. I have prayed over and over for her to live. She is so full of life. Her son needs her.

If you're reading this blog today, please stop and take a moment to pray for A. She is a very dear friend. She loves life, her son, her job, her family, her friends, her Lord. She is such a happy person, no matter what she's going through. She trusts God with all her might. She is a wonderful person. Please pray for her.

Things I Love

I decided to make a list of things I love. Not necessarily things like the Lord, family, friends. But little things that make ordinary life a little sweeter. So here goes.

polka dots
high thread count sheets
caramels
chocolate
chocolate covered caramels
clear, starry skies
lilies
the smell of coconut
Dr. Pepper
General Hospital
fresh fallen snow
flip flops
quiet moments
all things pink
Disney cartoons
snow globes
tea pots
picture frames
quilts
cookie jars
turtles
whippoorwills
fireflies
flameless candles
soup
angels
Cool Water perfume
lip gloss
creamsicle ice cream
coffee
purses

I could keep going, but this list could get pretty long. I do love the simple little things of life. The smallest details that not everyone notices. It's what makes life enjoyable. I feel like people miss so much if they don't stop and take notice of the details. I stare at a picture forever because I notice everything about it. But then every time I look at it again, I see something that I didn't see before. I take it all in. Or try to at least.

Insomnia

I can't sleep. Which doesn't make sense because I'm exhausted. It happens to me a lot. Sometimes I can't turn my mind off. It's like a constant roar of noise and erratic thoughts in my head. It is so frustrating. Sometimes it's because of crazy dreams. Tonight, that's the culprit.

I dreamed that my cousin asked to borrow $20. I needed to get ready for work so I gave her my debit card and car keys and told her to go get it while I took a shower. While she was gone she spent $400K on a satellite bill and fell in love with a four foot tall cowboy with a mullet. She let mullet man drive my car and he proceeded to total it. Needless to say, I was upset when she returned.

Then I dreamed that my dad and I took a road trip to Nashville to kidnap Goldie Hawn because she stole my iPod and, by hell, we were getting it back! Along the way we stopped at an old gas station and I stole a peanut butter and jelly sandwich from a little girl.

I guess I choose a life of crime in my sleep. I'd almost be afraid to have someone analyze my dreams. I'm afraid of what they'd come up with! LOL

Best Message Ever!

John 15:16 Ye have not chosen me, but I have chosen you, and ordained you, that ye should go and bring forth fruit, and that your fruit should remain: that whatsoever ye shall ask of the Father in my name, he may give it you.

The church I've been attending has been looking for a pastor for over two years. Tonight we had a guest preacher giving the message. It was truly the best message I've heard in my life. He preached on the role of a christian, which is to bear fruit. Fruit of the spirit. And how do you bear fruit? By going through "storms". When God sends a storm in our direction, he is trying to make us stronger with it. He has a task for us. The smaller the storm, the smaller the task. The bigger the storm, the bigger the task. It's how we build faith. It's easy to have faith and trust God when we are having good times. Can you have faith and trust the Lord during a storm? It's hard, trust me.

This message touched my heart to the core. It was as if the preacher knew my thoughts. My life has been storm after storm for nine months. I've asked God why. Why are you doing this to us? We're good people. We don't hurt anyone. What makes us deserve this? I'm starting to realize that God is building our testimony. He wants us to spread the word of His works. And has He ever worked on my child. By all medical rights, she should have died. We were told "keep her comfortable", "don't expect much out of her", "we won't be able to get her off the ventilator", and my personal favorite, "pray for your miracle, but don't plan on it". Well, little did they know, I could plan on my God. Because He had a plan for me. I prayed as hard as I could for our miracle. And God gave it to us. Because He has a task for us. Because He loves us. Just because.

One Phone Call {Y3W}

I've had a bad week. Not dealing with Reagan's illness too well. But then I started to feel better. We've had beautiful weather and spring has sprung. I had decided that I'd blog about that today. Then I got a phone call this morning that gave my mood a 180. It was Reagan's endocrinologist. Her glycine level has climbed yet again. Increase the sodium benzoate and we'll see you in May. Click. Like it didn't matter at all. I burst into tears. The increased glycine levels are what causes brain damage. When she was in a coma and being ventilated, Reagan's glycine level was 1100. Today it is 574. That's getting too close for comfort for me. I immediately started to wander to those places that scare me.

What if we can't get it down?
What if she starts having seizures again?
What if she suffers brain damage?
What if she dies?

I realize that aside from medicine, there's nothing we can do for her. But it's the natural tendency of a mother's heart to start to worry. I don't know why. It does no good. My grandmother always said worry is like a rocking chair. It gives you something to do, but gets you no where. True. But how do you stop it, especially when it's your child's life at stake?

I sometimes wonder what it's like to have a baby and not have to deal with these issues. What's it like to come home and not have your world come crashing down 24 hours later? What's it like to spend the first few weeks of your baby's life at home with family and friends instead of in a NICU fighting for life? What's it like to be able to breastfeed instead of tube feed?

It's the hand we've been dealt. We have to play it. There's no "fold" option here. We have to hold 'em. But I get upset when I think about the life that we were "supposed" to have. Then Reagan sees me crying and she gets upset. She's so sweet. I love her so much. Even if her body doesn't function as it should, she's perfect. Because God makes no mistakes.

Days Like Today...

...Are very hard. Reagan had her 9 month well child check up today. I know she's behind in just about every area of development. But as we went through the development questions I became more and more sad. "Is she sitting up?" Well, no, but she can roll over! "Is she banging toys together?" No...but she reaches for everything! "Does she look for Daddy if you say his name?" Nope. She is Daddy's girl, though. She gets so excited when she sees him and she reaches for him. Okay. She is behind, for sure.

I don't know why it's so hard. This is not news to me. We see it every day. I guess just having it all laid out on paper makes it harder to ignore. Not that we ignore it, per se. We just don't over acknowledge it. We work on the areas that need work and we praise the areas that she's mastered. We choose to be positive and focus on her abilities and silently work on her disabilities. It's easier that way. But then I have a day like today and it all comes crashing down. I've kept my fears and worries inside and ignored them and now that they've been forced to the surface it's hard to deal with.

Reagan is a happy baby. She rarely cries and she laughs and smiles and squeals quite a bit. Her face lights up when she sees her daddy and she is so content in my arms. She is attached to Tim and I. If we walk away from her she cries. I know in my heart that she feels loved. How could she not? Reagan has so many people in her life who love her immensely. So why am I so upset over something as small as development? She is making progress. That's the most important, right? So how do I keep focus on that? Lord, help me.

Pictures Finally Came {Y3W}

We finally got the rest of the pictures that we had done way back in November. So here they are. Enjoy!

Doctor's Appointments Suck

Reagan had her metabolic clinic yesterday. This is when she sees the doctor that follows her NKH. Everything started out fine. Weight? 55th percentile. Length? 60th percentile. Vitals? All normal. On with the check up. Reagan was such a good girl, as always. She never minds going to the doctor. She was quiet and content while Dr. Nickels did his exam and told me that everything was looking good. Keep up the good work. Next came the dreaded blood work. It's never easy to get blood from Reagan. Two phlebotomists, two NICU nurses, four sticks, multiple bruises, and one crying baby later...no blood. On a normal basis, I would have made them stop at two sticks. But it is so important that we monitor her glycine levels closely. That is how we adjust her medicine. So now we have to go back next week to try again. I'm not looking forward to it.

On a lighter note, we had pictures made today! Just me and Reagan. I feel like we got some really good shots and Reagan was so cooperative. I can't wait to see how the pics turn out. It's going to be a long two weeks until they're ready.

First date without Reagan

Tim and I have not had any alone time in eight months. So on Saturday we sent the princess to be with Grandma for a few hours so we could go out on a date. How refreshing! While I love my baby girl more than life, it was so nice to go out with my husband and not have to worry about her for a few hours. We didn't do much...dinner and grocery shopping. Ha! Grocery shopping is actually considered a date when you have a baby. Little did I know. But it was wonderful.

Over the last few weeks I had started to feel distanced from Tim. This seemed to make it better. I felt reconnected and refreshed. So now I'm on a mission. Once a month (at least) I plan to make an unbreakable date with my husband. No baby. No worries. I feel like our marriage needs it. And ultimately Reagan needs it, too. She needs parents who are happy and stable and loving. We have to take care of our relationship just as much as we take care of her. It's what makes a happy family unit. I can't wait to see how it improves our family!

New High Chair {Y3W} and Possible Milk Allergy {Y3W}

I have two posts for your three words this week. First, Reagan got a brand new high chair!!
Finally! I'm so excited. No more trying to hold her and the jar of baby food and trying to keep her messy hands from touching the chair (because we don't have a kitchen table) and try to keep her from flipping out in the floor (because she's so wiggly). This little contraption is going to make my life sooooo much easier. It's sad that I'm this excited over a high chair. Ah, the fascinating life of motherhood.

So for my second Y3W...Possible Milk Allergy. A few weeks ago we gave Reagan about an ounce of whole milk just to see if she would like it. She did and she drank it straight down. A few minutes later I noticed a rash on her chin and neck. She has severe eczema so I didn't think too much about it. I put a little hydrocortisone cream on it and it went away after a little while. On with our day. Then a few days ago I gave Reagan a small bite of ice cream. Same thing. Rash on chin, cheeks and neck. So now I'm wondering if she's allergic to milk. Ugh. One more thing. If she is allergic to milk, that is going to suck. For her and us. No milk, cheese, ice cream. And we can't very well have those things and not let her have them. That would be torture. So I'm really hoping that this was just a reaction to her first few times of having milk products and it won't happen again. My little girl is just full of surprises.

Is this what burnout feels like?

I've been a nurse for ten years. And for ten years I've heard seasoned nurses talk about "burnout". They say it's horrible. You hate your job. You no longer have compassion for your patients. You'd do anything to get away from nursing. I know some nurses who have burnout. They are miserable.

Well, here lately I hate going to work. I don't hate my job per se, just the politics of it. I also hate some of the attitudes I work with. Now I'm not naive enough to think that I can please everyone all the time. But I'd just be happy with making someone happy every once in a while. I work in a department that seems to be the red-headed step child of the hospital. Which means we are damned if we do and damned if we don't.

I still love delivering babies. I still have compassion for my patients (the ones who are really sick, anyway). I just think I'm starting to hate the place I work for. But then I'm told that it's no different anywhere else. I would like to find a place where no one takes advantage of anyone else. A place where no one judges anyone or talks trash about anyone. No back biting. No pissing contests. No jealousy, trying to one-up anyone, or just plain being rude. A place where everyone gets along and we all work toward one goal...the well being of our patients. It's hard to work toward that goal when there's so much high school bull shit going on! I graduated in 1999. Little did I know that high school never really ends.

Two New Teeth! {Y3W}

Somebody stop this train! My baby girl sprouted another tooth this week. This makes two in two weeks. I think I'm gonna be sick. I cried my eyes out when she got her first two teeth. It's the first sign of her growing up. Now she has two more. It seems as if she grows up over night. I go to work...Come home...She's heavier. She goes to Grandma's...Comes home...She's longer. I blink...Two more teeth. Ugh. It's so cliche. Everyone always says "oh they grow up so fast". Well, they do. When she was a tiny baby I wanted her to hurry and get bigger so we would know the extent of her disability. Now I desperately wish I had those months back. I think I shielded myself from bonding with her because of her disorder. At first all I could see was a handicapped child. A child that God had only loaned me and would call home before I was ready. Now that I know more about NKH I want to get that time back to bond like we should have. I love her more than life and I feel like I'm now starting to see past NKH and see the beautiful child that she is. The last few months have been much easier. I don't dwell on "that day" anymore. The day that she will leave me. In fact, I hardly think about it. Sometimes it creeps into my head. I just tell myself that I'm going to die long before her. She is going to live a happy life, no matter how long. That's what it's all about, isn't it? A life loving God and each other. A happy life. That's the life she will have. I promised God and her that I would do my best to be the best mother I could be and give her the best life possible and that's exactly what I'm going to do. Now...to find a way to keep her little...

Eight Months Old {Y3W}

Eight months ago today I was given the most wonderful blessing of my life. My beautiful princess. All 6lbs 1oz of her! It's so amazing to think that the last eight months have gone by so quickly. It seems like only yesterday that we were coming home from the hospital. She has made so much progress, most of it being in the last two months or so. She is finally starting to become more social and she finally shows real interest in her toys. Real interest meaning she plays with them, not just reaches for them. She has favorites and not so favorites. She knows what she likes and what she doesn't like. She's picky for sure.

We had a trip to the eye doctor yesterday. We spent more time parking the car than in the office. The doctor says that Reagan's vision is definitely better with her glasses, but seems unchanged over all. She is starting to have some slight drifting of one eye. We'll be keeping an eye on it and if it gets any worse we may have to do some patching. But Reagan's eyes are structurally healthy! Very, very good news.

So happy eight months, Punkin! It's been a wonderful, wild, joyful ride. I can't wait to see where you are in the next eight months. I love you!

Results Are In {Y3W}

Your Three Words is a blog hop started by Jenni from the blog in which you describe you week in only three words. So here are my three words for this week.

Results Are In

Reagan's EEG results were handed to us on paper yesterday. Occasional sharp wave activity with face reversal activity. Baseline brain wave activity was normal for a healthy 7 month old. So what this means is that Reagan is at an increased risk for seizures because of this sharp activity. We knew this. So essentially, this is not something to be worried about, but it is something to be aware of. She remains on Keppra, which seems to be working. So we will continue to follow the current plan and, barring any complications, we will have a follow up EEG in one year.

On a funnier note...Reagan bit the neurologist! Not hard. The doctor made the mistake of getting her hand within reach of Reagan's mouth and, since she's teething and biting anything she can get ahold of, Reagan just leaned right over and bit her! I had to try really hard not to laugh. Good job, girlie! I can't stand that doctor! LOL

Bad Dreams

I was sleeping so soundly when I was interrupted by a nightmare. One of those nightmares that feel so real that you wake up in a cold sweat and wonder if it really happened. I dreamed that I was having dental surgery and the dentist had ordered some pre-op blood work, during which it was discovered that I had Leukemia. I was sent straight to the hospital to begin treatments. I called Tim in hysterics because I had no idea how to process what I had just been told. I remember crying as the nurse inserted my IV. Not because it hurt, but because I wondered what was going to happen to my family. What would happen to Reagan and Tim if I didn't make it? How would we live if I couldn't work? We can't survive on Tim's job alone, nor mine. We would lose everything. How would we feed our child?

Then Tim brought Reagan to the hospital to see me and I didn't even have the energy to hold her. She sat crying at my bedside and reaching for me and I could do nothing about it. Tim kept telling her that I was very sick, but that it would be ok and she just cried and cried. I felt emotionally and physically drained. It was almost as if I could really feel how bad that situation would be.

Then I jolted awake to the sweetest thing. Reagan had snuggled close to me and had both arms wrapped tightly around my arm. It was if she was saying "you are mine and I'm never letting you go."

On another note, Reagan has to go to the neurologist today (weather permitting). We were told two weeks ago that her EEG had some "slight abnormalities" but none of her medicines were changed. So how abnormal could it really be? I'm just afraid we will get there and have a huge bomb dropped on us. I try to remind myself that her neurologist is very pessimistic and it could be nothing. But the nurse in me says "well it could be this, and this, and this, and what about if it is this?" My mind has a tendency to drive me crazy in times like this. These are the times that I wish I had no medical knowledge at all. Sometimes it would be easier to not know all the things that could go wrong. Sometimes I wish I could just listen to the doctors and trust them. But I can't. I almost never let them do the things they want to. Lumbar puncture? I don't think so, my friend. Six hour EEG? Not today. More and more blood work? Not necessary.

I think they get aggravated at me at times. But I refuse to let them poke and prod on my child if it's not necessary. She is thriving and doing well. We'll monitor the needed blood work every two months like clock work and if something strange pops up then we'll check that out, too. But my child is not a pin cushion. Nor will she be treated like a specimen. She is a child. A beautiful, sweet child. She has a disease that is a part of her. That disease does not make her.

Cold

It's cold outside. Painfully, blistering cold. The kind of cold that makes your muscles hurt and makes you afraid to draw breath. I look at my sweet baby sleeping so soundly warm in her bed. I'm thankful beyond words that I have a warm home for my child. I think about the so many people who have no where to go. No where to turn. I always think of the homeless on cold days. I worry about how people are going to stay warm. My heart hurts when I think that it could easily be me and my family. No one is immue to being homeless. Sure, things are stable right now. But we have no idea what the future holds. I only pray that the Lord continues to bless us as He has so far.

Reagan looks so peaceful when she sleeps. Pink cheeks. Tummy rising and falling slowly with each breath. Roger (her bunny) tucked securely under one arm. I love her so very much. I had no idea my heart could hold so much love for one person. I always knew she would change my life, but I had no idea how much. I think of her every waking moment. I wake up several times a night to check if she's okay. Every decision I make has her at the brim of it. She is what drives me. She is my world.

How it all began.

It occurred to me that some of the people visiting this blog may not know about the disease that affects Reagan or how we got to this point. So let's start at the beginning.

Reagan was born on May 21, 2010 after a completely normal pregnancy. By all appearances she seemed totally healthy and after two uneventful days in the hospital we were discharged home to begin our family life. Tim and I noticed that Reagan seemed very sleepy. She would wake up if you stimulated her, but if you left her alone she fell right back to sleep. As the hours passed she got more and more sleepy and after about 12 hours at home she stopped eating. We took her back to the hospital where she continued to slowly deteriorate. She ultimately ended up being intubated because she was barely breathing on her own. The call was made and Reagan was transferred to University of Tennessee NICU for further treatment.

Once we arrived at UT, doctors were baffled. All of Reagan's blood work, x-rays, cranial ultrasounds, CTs, MRIs...everything was normal. They could find nothing wrong with her. We were fortunate enough to run into a doctor who had seen this type of behavior before. Once. One time in almost thirty years of medicine. He ordered a blood and spinal fluid glycine level and found our diagnosis. Nonketotichyperglycinemia.

NKH is a metabolic disorder in which the body lacks the enzyme needed to break down the amino acid glycine. Once the glycine builds up in the system, it is neurotoxic. This would explain why everything was normal at first and then Reagan slowly went down hill.

Treatment was started right away and within a few hours Reagan started to improve. By the end of the week, she was breathing on her own again and by the end of the following week we were able to take her home. We had no idea what kind of life we were bringing her home to since NKH is considered terminal. We had no idea how long to expect to have her. All we knew was that we loved her and we wanted to cherish each moment we had.

Reagan was fed primarily via nasogastric tube for the first month of her life. Then she decided to start eating again. She now eats very well and is 75th percentile for weight and height.

Reagan has low upper body tone and is seen by physical and occupational therapy twice a week. She is showing signs of developmental delays, but she continues to make progress. She is on several medicines that break down the glycine for her body and also anti-seizure medications since seizures are classic with NKH.

There is a very broad spectrum of severity with NKH and we are blessed enough to be dealing with the mildest form of NKH documented. The leading expert in the country, Dr. VanHove, told us that Reagan will be able to walk, talk, eat, and learn. He told us to expect delays, but she will thrive and do well. Prayers answered.

My ultimate dream would be to eradicate NKH. I don't think that is possible, so I hope and pray that people become more aware of NKH. Tim and I had no idea we carried the genes for this disease. I would love to see more prenatal testing for NKH genes so parents can have an opportunity to be prepared. Some doctors have never even heard of NKH. This is unacceptable to me. With prayers and the help of the wonderful group NKH Crusaders, I dream of a day NKH is included in routine prenatal testing. It comes like a thief in the night and changes your life drastically. I wish we could have been prepared.

http://www.nkh-network.org/
http://www.nkhcrusaders.com/

Simple Blessings

Today a sweet little baby across the country is having a life changing day. Scarlett (her parents call her butterfly) is having a massive brain tumor removed today. When I read Scarlett's story, I'm overwhelmed with the thoughts of everything I'm thankful for. I'm thankful that we have a God who loves us. I'm thankful that my daughter is alive and doing well. I sometimes think our situation is simply horrible. Then I remember that there are others out there who have it much worse.

Scarlett's parents turned her over today for a 16 hour surgery. My heart aches for them. I can't imagine having to hand my child to a surgeon for the next 16 hours. To hand my child over for brain surgery. God bless them. Be with them, Lord. They need you so much.

So for today I will count my simple blessings and pray for such blessings for another family. For today I will savor the moments I have with my child. For today I wear red. In support of Scarlett.

Attack of the green-eyed monster.

I'm standing at a patient's bedside while the nurse practitioner prepares to do an ultrasound. She's about 7 weeks pregnant and excitedly awaiting the image to come on the monitor. I know her. I'm excited for her. Maybe this one will be her little boy. Her girls would love a brother. I'm excited for her...right?

Suddenly there is a faint flutter on the monitor. Is that a heartbeat? It sure is!

Wait a minute...What's that lump in the pit of my stomach? Is that...Oh my gosh...I'm jealous!!! Or maybe a little angry. It's sure not a feeling I would have expected. I'm a little jealous (perhaps angry) that she's pregnant and excited. Or rather that she's able to be excited about a pregnancy. I don't have that luxury. I'll never again be able to get pregnant and be excited about it. My future pregnancies (if there are any) will have to be meticulously planned ahead of time. With Reagan's condition being genetic, there is a 25% chance it will happen again with each pregnancy. God wouldn't do that to us again, right? Don't be so sure. I know of families who have more than one child with NKH. I hate to say that we couldn't handle that. I'm afraid God would do it to us just to prove that we can handle it. He promised He'd never put more on us than we can handle. I just wish He didn't trust me so much.

25% chance. Every time. But that still means there's a 75% chance that the child wouldn't have NKH. I have to keep thinking of that. I wish I could go back to the days of being able to be happy and excited about a pregnancy. I wish I could be care free and just "see what happens". Some of us don't have that luxury.