Orbs of light

Little children of the night
Scamper, romp, jump, oh my

Voices squealing with delight
Glowing orbs are in sight

Catch them!
Catch them!
Touch the light!

Wonderous orbs taking flight
Small hands reaching toward the sky

Catch them!
Catch them!
That one's mine!

Twinkling, blinking
Bumbling
Orbs of light

Grace us with your flying light
In the shadows of the night

For My BFFs

Sometimes our light goes out but is blown into flame by another human being. Each of us owes deepest thanks to those who have rekindled this light. ~Albert Schweitzer

Thank you with deepest sincerity,
Jen :)

Happy Birthday Lo Lo!

You are old...not!

Love,
Jenny

Grace's Recovery...

Yesterday was a much easier day for Gracie. We switched her to plain Tylenol, and suddenly we had compliance with the meds. It was such a relief.

She is moving around a lot more, and I think I told her at least 100 times to stop running or jumping or lifting things. It warms my heart to see her getting better. We took her to my niece, Molly's, birthday party, too. She did pretty well there, but after 3 hours was asking to take a nap. She spent the majority of time playing dress up or Barbies with Chloe, Molly, and Meghan. I caught her running up the slide in the backyard once, and she wasn't happy with me telling her she had to come down out of the club house.

After a bit of a battle regarding some paper tape on her neck, we removed the gauze bandage yesterday, and now I've gotten a chance to look at the incision. It is nearly three inches long, and quite raised. I forgot how surgical incisions look until they recede back into the skin. She has steri-strips holding it together right now, and two regular stitches on each end. She'll have the external stitches out as well as the steri-strips removed this Wednesday.

She also had her first shower since the surgery. It took quite a while to coax her into the shower. I think she may have been scared that the water would hurt her. Once she got in though, she was very happy. She played with various cups, pouring water throughout. Afterward, I could tell she had used up most of her energy reserves so I put in the Barbie Mermaidia DVD so she'd lay low.

Overall, Grace is healing physically, but now we're noticing that her sensory issues are much heightened. She also is trying to control all of the experiences she goes through, and has achieved a new level of defiance. We're giving her a wide birth for a few more days.

I came into her room to check on her the other day, and she said, "Mommy, I think I'd like it if you would knock first before coming in." This surprised me a bit since she is always so happy to see me, but this is the Grace that just had a scary surgery. She has even hung blankets on her bunk bed to make her own space within her room. This may just be a six-year old thing to do, but I have a feeling it is all related to the surgery.

Finally, Meghan had a bit of a breakdown last night. She was getting ready for bed, and suddenly burst into tears. I asked her what was wrong, and she said, "How come no one is paying attention to me? Gracie got a lot of special things like an elephant, Barbie, coloring book, markers, dalmatian puppy, and new pajamas. How come I didn't get new silky pajamas with kitties? Why?"

I replied, "You are very special Meghan."
She whined, "I'm not special."

"Oh honey, yes, you are. I know how you feel. I remember how I felt when my sister Kristen had her appendix out when we were little. I wanted to be special like her and get special gifts, too. I remember she got a new stuffed animal called Honcho the Hippo, and I wanted it so much. But I didn't know that surgeries are not fun and that they hurt. I only knew that I wanted to get special attention so I want you to tell me when you need attention Meghan. I'd be happy to give you extra hugs and love because you ARE special." Then, I handed her a new Barbie film camera as her very own special reward.

We all need to adjust, and I hope Grace's surgical experience fades quickly into the fabric of a fun rest of summer.

Finding Courage Through Sharing - July 2008

This month's topic is to share about anything that has been on your heart or has mattered to your family over the past month. Our daughter, Grace, had surgery for a thyroglossal duct cyst in her neck. It had been quite a while since we were back in the hospital environment, and it was difficult after so much normalcy.

Grace stretched her legs out underneath the blanket, and a green binder containing her medical charts slid off the gurney and onto the floor. The noise startled her. She sat up quickly, and then scrunched her upturned nose as she slurred, “Whaaat was thaaaaat?”

The pre-op nurse scooped the chart off the floor, and said, “You need to lie down. How about I find a book for your mom and dad to read to you?” As we nodded in agreement, Charlie put his hands in Grace’s armpits, and slid her limp, flailing body up toward the pillow again. Grace let out a long giggle. “That was loud. Stop that Daddy! Let me goooooo!”

Charlie stroked Grace’s hair away from her face, but she wasn’t pleased with it. She slapped the air trying to reach Charlie’s hands. I scolded, “Gracie, we do not hit.” I wondered if it mattered that I was scolding her since she was high on Versed to calm her before the surgery. I figured her inhibitions were very low. The nurse returned with the book, Thumper.

“Grace, let Daddy read you a story. Daddy will stand on this side, and I’ll stand on the other side.”

“Yay! I want a story.” Charlie began reading to Grace, and I began to look around the pre-op area. We were in pod 1, but had been waiting for an hour already. The beautiful little boy with Down Syndrome had just been wheeled away on his gurney. I smiled at him as he rolled past me. He grinned and then pounded his fist on the pop-up toy at his feet. Most of the other patients had been taken into surgery already.

It was Grace’s first time under anesthesia, and I was nervous. I let Charlie’s reading blend into background noise of the pre-op area because my nerves were commanding my attention. I searched the spaces of the pre-op area in an attempt to distract myself. Suddenly, a woman carrying a baby boy about 9 months old went into pod 3. Her son had an NG tube in his nose, and his skin was a familiar pumpkin orange. I guessed he had liver disease, but couldn’t be certain. He reminded me of my girls when they were babies suffering from Alpha-1.

As I scanned the room some more, I noticed there were old pictures from calendars posted around the room. Grace’s pod had pictures of puppies. Charlie’s words filled my ears momentarily again, and I found that my hand was stroking Grace’s hair as she listened to the book. She looked quickly looked my direction and blinked a few times.

Suddenly, I flashed back to the first moment I saw Gracie. It was an odd experience. I had not consciously decided to recollect that day she was born, but there it was…unfolding again inside of my being, almost as if someone else had placed the memory in front of me. Tears began to well up, and I swallowed hard against the lump in my throat.

There she was. She had just been born premature at 34 weeks by c-section because of my severe preeclampsia. I was terrified for her. As I heard her inhaling screams while the neonatology team assessed her, I said, “I want to call her Grace. She is our miracle.” Charlie smiled and nodded in agreement.

A drug called Magnesium Sulfate was pumping into my IV, and it was making me disoriented and distracted. I was drifting, and my eyes were closed. Suddenly, I heard my mother’s voice. She and Charlie brought Grace over to the OR table to meet me.

Gracie was wrapped in several blankets and a pink and blue stripped hat was pulled down on her head. I could only see her face. Her eyes kept blinking in response to the lights of the operating room, and I could tell she was wriggling inside her blankets. As she moved, her forehead wrinkled, and small squeaks came from within her. I began to wonder who she resembled, but I couldn’t quite figure it out.

“It’s time to go,” came from the neonatologist.

I said, “I want to give her a kiss.” Mom and Charlie said I should.

As I recalled touching Grace’s skin for the first time, I heard Grace slur, “Daddy, I waaannttt anotherrrrrrrrr boooooooooook.”

My hand was still stroking Grace’s hair, but I was filled with love instead of worry. I felt warm from within and a peace had come over me. Now, happy tears filled my eyes. She would be okay.

Gracie Update

Dr. Martin called this afternoon to give us the pathology report on Grace's cyst. The pathology report indicated that her cyst was indeed a thyroglossal duct cyst. There were markers of inflamation and a past infection so it was a good thing we removed it. It would have become infected again. In addition, there were no signs of malignant cells. Yay!

Grace has had a bit of a rough day. She detests the mint taste of her vicadin, and as such is fighting us "tooth and nail" every time we say she needs to have another dose. She is drinking and eating very little so when she requests something I get her anything she wants. I'm a little worried she is going to get dehydrated. (Kristen, this is shades of Chloe with her tonsilectomy.) I'm still being pushy, bribery mommy. I hope this doesn't last. Hopefully, we'll be able to bring her off the vicadin soon, and use straight Tylenol, which tastes better.

The medicine makes her spacey, but very irritable at the same time. It isn't a good combination. I thought she'd be whiney, but she is just crabby. This too shall pass, but it has been hard for us to see her not being her usual silly self.

Meghan came home today from Grandma's house, and she is having some jealousy of Grace. She keeps telling us that something or other hurts her. We're trying to give her more attention but it is rough with the on duty nursing care and full time mommy/daddy role, too. Also, she is desperate to play with Grace, but Gracie isn't really up to it just yet. Megs is feeling a little out of sorts, and well, we all are really.

Here is to more healing, patience, and time...

Day After Surgery

Black bird singing in the dead of night...

Take these broken wings and learn to fly...

All your life...

You were only waiting for this moment to arise...

Black bird singing in the dead of night...

Take these sunken eyes and learn to see...

All your life...

You were only waiting for this moment to be free...

Blackbird fly, blackbird fly.

Into the light of the dark black night...

Blackbird fly, blackbird fly.

Into the light of the dark black night...
Blackbird singing in the dead of night...
Take these broken wings and learn to fly...
All your life...
You were only waiting for this moment to arise...
You were only waiting for this moment to arise...
You were only waiting for this moment to arise.

Song lyrics by Paul McCartney.

Day of Surgery Pictures

The posts I made during Grace's hosptital stay simply don't report the day as well as these pictures. Enjoy! We are so proud of you, Gracie.

Saying goodbye to Meggie.

In the day surgery Child Life playroom.

Enjoying my new Furreal Friend.

Mommy and Gracie in the child life area.

Hanging around waiting

Putting on hospital bracelets


Checking out Danni kitty's new "necklace"


Smiling for my Mommy

Danni Kitty has her hospital gown on too.

All dressed in my hospital gown, and if you look close, you can see the last picture of my cyst.

Dressed and waiting to go to the pre-surgery area.

Watching our dear friend, Fred Rogers, who calmed our fears.

Going for a ride in the elevator on the way to the pre-surgery area.

High on versed, moving around a lot :)


Daddy reads to me while we wait and wait for the surgery to begin.

Daddy greets me after surgery.

Resting afterward

Home

We arrived home around 1:30pm. I'll update the blog later with some pictures.

Thank goodness for home.

Getting Better

Grace is much improved today. Of course, she is pretty high as a kite on her vicadin. :) She slept until 9:30am when we woke her up to eat. She grabbed a strawberry poptart from Charlie's hand, and promptly started eating. Of course, the fact that Dragon Tales was on TV helped a lot. She also had 1/2 a container of chocolate milk.

Before they capped her IV, the nurse Kathy gave her some anti-nausea medication to make the transition to food a little easier. Yay for that. She took her pain medicine orally and kept it down.

Progress...

We're going to get her up and walking soon, and then hopefully get sprung sometime after lunch.

It will be a quiet day at home for her.

Drain is out, discharge orders coming

Dr. Martin was just here. He examined the area, and then pulled out the drain. He is still pleased with how her wound looks.

The good news is that he said we can go home later. First, she'll have the IV pulled and see if she'll eat something. So far, it hasn't gone very well, but they said her bowel sounds are good.

He expects her wound to continue to ooze for a few more days so we'll have to replace the gauze. I'd better get the discharge nurse to teach us how to do that.

She woke up for Dr. Martin's exam, but on her way back to sleep said, "Mom, when I woke up after surgery, I was really crabby not goofy. You said I'd be goofy. When we get home, can I please, please, please watch TV?" A few reassurances and explanations later, she was back to sleep. It comforts me when she sleeps. Sleep is very healing.

I'm so proud of her. She has done quite well considering all of the usual sleep disruptions, pain, and restrictions.

One brief rant, why doesn't anyone ever close the room door when they leave? Grrrr...I've had to get up several times to close it since the staff members forget that there are you know, CHILDREN sleeping here. Also, why on earth would you have morning report outside an open room door? I don't need to hear about how an ortho isn't responding appropriately for some other child.

Oh wow, 12 interns just piled into our room to see Grace's roommate who had her appendix removed, but wow, one of them actually closed the door on the way out. AMAZING! :)

Rough Night

Sleep is not easy in a hospital, although our wonderful nurse Lorena on PM shift gave Grace an IV dose of pain meds since she has been vomiting. Gracie slept really great until her roommate woke up in a panic about using the bathroom. Of course, this gave Grace the idea of needing to go as well. Her IV is pushing a lot of fluids. It is an effort to unhook, unplug, and untangle her tubes and wires so Gracie panics a bit about getting to the bathroom in time. Wow, this is reminiscent of NICU.

The night nurse Alyssa is an absolute sweetheart too. When Grace woke up again at 5 am, we found that her wound gauze was strung about the bed. So, the nurse came again and put some more in. Sorry if this grosses anyone out, who reads this. I'm glad to see that it isn't draining as much. I still haven't seen her incision yet since it is buried underneath all that gauze.

Dr. Martin will be here soon enough to do rounds. I suppose we'll get the interns first though.

Grace's sensory issues have come roaring out of her. She detests the IV in her left hand, and the pulse oximeter on her thumb. It makes me giggle when I see her making the nurses switch the pulse ox to different fingers. She wants to control something, anything so the pulse ox is her object of choice. Go Gracie! Mama remembers a little too well how hospital life feels. If anyone is wondering, my urge to bolt is subsiding. Perhaps it is because we will be leaving here today? I hope so. It was a challenge to conceal my anxiety, but I think I succeeded.

So, Gracie received another dose of pain meds in her IV at 5:30am. It had been since 10pm the night before. She was writhing in pain, and I made a bee line for the nurse to get the meds administered. It was a tense 1/2 hour, but she finally drifted off to sleep again. I hope the docs don't show up too soon. She needs to sleep. Charlie and I switched places. He is on the cot, and I'm in the chair now.

Want to run...

Wow...

Charlie found out that one of his students is here today so he went to visit him for a moment.

As I'm sitting here with Gracie, I'm having a hard time keeping it together. Post traumatic stress surrounding my past health issues as well as the girls' prematurity/Alpha-1 is giving me the sensation to run...run as far away as possible. This is such a conflicting sensation for me because I also have an intense need to shelter Grace right now.

I guess this blog is my outlet right now. Sorry if I ramble.

Grace is resting comfortably, but she is not eating or drinking as well as they'd like her to...so now, I'm pushy mama, and Char is pushy dada. "Gracie, you've got to drink this. You can't have your medicine without something in your tummy." This really reminds me of NICU where we were patiently waiting for her to learn how to eat so she could finally go home.

Earlier today before her surgery, I had a very vivid memory of seeing her for the first time in the operating room when she was born. It was almost startling to me how vivid it was. I guess the sights, sounds, and smells of the area outside of the OR brought it back. Of course, it brought tears to my eyes remembering her precious little face that day. She is our miracle girl.

Thanks for your positive thoughts and prayers.

Fun with hospitals...

Well, there was some confusion post surgery. We were supposed to go see her in recovery, but they never called us back there. We were suddenly told that we should meet the nurse in the hallway to take her back upstairs.

So, they took us back to the admitting area because they thought she wasn't staying overnight. Um, she has a drain in...Charlie was quite annoyed, but we rolled with it.

So a brief stay in the day surgery area, and then they found us a room on the 5th floor. We're in room 526B. It is a shared room so we are in very tight quarters here. Children's is currently building a whole new wing where there will be all private rooms. We'll live, but I'm glad to hear it will be more family friendly here soon.

Gracie is now waking up more. We're trying get her to eat some jello or drink some chocolate milk so she can take her next dose of medicine orally.

She is pretty ornery, which is not unexpected.

I hate seeing her in pain and uncomfortable.

Surgery is Done

She is waking up now after 1 1/2 hours of anesthesia. We still can't see her though. It will be about another half hour before we can see her in recovery.

Dr. Martin came out to talk to us, though. He said, "She did great. She came out of it kind of yelling, which is normal." I laughed a little at that, but then I felt bad because she is in pain.

He said that her skin was a little thin in the area from her former infection, but he left it there anyway. He wants to see if the blood flow will improve to the area. He thinks it may scab a little, and possibly scar a little. We'll have to see what happens. If it scars, we'll have to deal with that later.

She is currently on IV vicadin, and will move to pill form later on for about 4-5 days at the longest. She'll be on augmentin for 10 days post surgery to prevent infection.

That is the update for now.

Still in Surgery

Everything was backed up in surgery today so she wasn't taken into surgery until 2:30pm. It was supposed to start around 1pm.

She did well with being NPO since 9:30am. I was amazed she didn't ask for food or drink at all.

The Versed before surgery made her slightly loopy, but mostly just dizzy. I did have to laugh at a teenager who was quite "high as a kite" on his way into surgery.

So, please keep the prayers going. Thanks for checking in.

Trying to wait patiently Jen...

Gratitudes

It has been a rough day for me emotionally. I guess life's recent events snuck up on me. Tomorrow's surgery for Grace is especially in my thoughts.

Right before bed, Grace said, "I think I'm a little scared now Mommy. What if I wake up during the surgery? I don't want surgery."

A few heart string tugging moments later, and she was off to bed anyway. I honestly feel for her. She's been through a lot lately with my brother Tim going off to Army training, her great friend, Zoe, moving to Switzerland, and now, a surgery for her, too. All of this in one week.

So, I've decided to focus on being grateful at the moment:

No one is useless in this world who lightens the burdens of another.
~ Charles Dickens

Here are my gratitudes:

1) My family, who show me that life is about the moments in between the routines. I love you Charlie. :)
2) My IRL friends new and old, who comfort me and surprise me by checking in before the surgery. Amy, I got your message, and will call you back tomorrow. Tony, thank you for talking me down at lunch today. I benefit from your clarity.
3) My online friends who send me postive thoughts and prayers for Gracie. Most of you, I've never met but I've gotten to know who you are through your eloquent words.
4) For my 89 year old Grandma Eve, who called me tonight to make sure I knew she would be praying for Gracie tomorrow. I'm so blessed she is still a part of my life.
5) For Lora at Ordinary Miracles, who graciously bestowed a blog award to me. Thanks so much Lora. It was such a pleasure to meet you in Saint Louis last month, and an honor to get to know your beautiful faith-filled family. Your blog is a source of encouragment to me too as we've not been sent down the liver transplant journey...yet. It is comforting to see your family adjusting to Nathan's recent gift of life.

I'm not sure of the source of this blog award. If anyone knows the source, please let me know. I'd like to give them credit, but here it is:



All blog awards are meant to be passed on, and I will pass it on to:

Childlife of In the Life of a Child: Michelle often blogs about her wonderful daughter, Jacqui, who was born with a rare birth defect called a lymphatic malformation. However, Jacqui is not defined by the medical events/issues which took place in her life. She has the heart and soul of an angel, and Michelle and her family impress me with their ability to take notice of life's blessings. Michelle, thank you so much for all of your words of encouragement and support over the past year. We've never met IRL, but your gift of expression allows me to take a peek into your beautiful life. If you have a chance, stop by her blog. It is well worth your time.

Now, I'm off to bed. I don't think I'll sleep well, but I'll try. Good night my friends. Thanks for your positive thoughts and prayers.

Grand Rounds Turns 200

Some of you may be aware of a blog carnival called Grand Rounds. It is the weekly rotating carnival of the best of the medical blogosphere.

On a lark, I submitted my post about Gracie's realizations about Alpha-1. It is an honor to be included, and I'm proud to be able to share a caregiver's perspective into life with children with Alpha-1.

Please check out this carnival. It is an amazing read, and an honor to see medical professionals participating in narrative medicine.

Read the carnival here:
http://gruntdoc.com/2008/07/medblogs-grand-rounds-444-the-200th-edition.html

Apprehensive

Well, we are rapidly approaching Grace's surgery this Wednesday, the 23rd, to have her thyroglossal duct cyst removed. The good news is that the antibiotics did their job, and the infection is gone.

I'm feeling a little nervous about the surgery now. The idea of Grace being put under anesthesia makes me a bit uneasy. I'm sure my fears are normal, though. In my opinion, Grace has had more than her "fair share" of medical issues and procedures, and well, this is one more to top the list.

Grace, on the other hand, is excited for her surgery now. I think she just wants to get it over with, plus I've enticed her with a brand new Furreal Friend dalmatian puppy. She can't wait get her new puppy.

Yes, I've resorted to a reward, but I think this surgery is a big deal for a 6-year old. Any surgery is a big deal for a 6-year old. :) Oh and, I bought a new pair of pajamas for her to wear. As some of you may know, Grace is a very sensory seeking child. She literally lights up when she feels silk or satin-type fabrics. So, she'll get a brand new pair of 100% polyester kitty pajamas similar to this. I believe she said this about the pajamas, "Oh Mommy! I just love these kitty jamies...ah, they are soooooooooo soft. "

So I'll take simple joys where I can get them, and our Gracie provides those joys every day.

Please think about/pray for Grace on Wednesday. I appreciate the power of prayer and positive thinking. Thanks much!

Go Ali!

Ali's life has been so inspiring to me since I met her mom online in 2003. Enjoy this inspiring article about her life since liver transplant due to Alpha-1.

A new outlook on life
Transplant source of inspiration for FSHS senior

Free State senior-to-be Ali Jacobsen will be competing in the U.S. Transplant Games in Pittsburgh over the weekend. It will be her third trip to the Games, which take place every two years. At just 7 months old, a liver transplant saved Jacobsen’s life in Omaha, Neb.

By Matt Tait
July 12, 2008

http://www2.ljworld.com/news/2008/jul/12/transplant_source_inspiration_fshs_senior/

Pas de Deux

These two, Katee and Will, are amazing. Simply amazing.

Souls United

Alone with my thoughts, this poem came to me.

Inhaled life
Grew as a soul
Learning along the way
Searching for you, but unaware

Experiencing life
Blocking and blinded
Stifled
Half of myself

Awakened
Driven to find
A natural affinity
So powerfully connected
Drawn together

You emerge
Other half found
Fated enlightenment
Vulnerable, open
Intertwined

Souls united
Essence of life
Embraced

But we're not like that Mom...

It has taken me a week to write this, and I'm not so sure I've quite captured last week's realization for Gracie or for me. It was difficult to recount the experience since my emotions pretty much ruled the moment.

I grabbed the black rectangle shaped door knob, and pulled hard to open the glass door of the conference room. Meghan was hip level to the left of me, and Grace was shoulder level on my right. Meghan gleefully muttered, "Yay! The Alpha friends!" We had arrived at our Alpha-1 support group meeting.

As the door swung open, both darted into the opening, pushing into each other as they squeezed through the door way. I scolded, "No pushing girls! Walk please!"

Gracie and Meghan made a beeline for the easel in the corner, and quickly grabbed the permanent markers in the bunch using their internal radar for things not allowed in our family. "Hand over those markers girls. You can have these."

A collective "Ahhhhhhh Mommmmmm" was uttered. "You know the rules," I replied.

"Mommy! Mommy! Can you give us some paper so we can draw on the floor?" Grace asked.

"Alright. Hold on." A few poster sized pieces of paper later, and the girls were tummies down on the floor engrossed in their art.

I greeted familiar faces that I've gotten to know since 2003, when I finally found the courage to attend a meeting. Denial and fear had kept me away. I'm not sure what had finally given me the nerve to attend. Since then, two of our Alpha friends have gone home to Heaven, where they breathe freely. Their deaths profoundly affected me and honestly still affect me.

These folks smile and grin as they watch Grace and Meghan's immense energy level fill the empty spaces of the room. These folks call themselves Alphas. Most of them find themselves short of breath or chronically coughing on a daily basis. Some use oxygen to help them breathe. Some breathe without oxygen just based on sheer will. Others suffer the ill effects of Alpha-1 in their livers. Whether it is lung or liver dysfunction, Alpha-1 joins our Alpha friends together.

The night's topic was oxygen equipment, and Grace took a seat next to me at a long table while Meghan continued coloring. As the meeting began, some of the equipment in the room began to pulse and hiss oxygen. This caught Grace's attention.

She said, "Mommy, that sounds like a snake."

"Gracie, that is not a snake. It is oxygen equipment. It helps our Alpha friends breathe because their lungs aren't working well anymore. You used oxygen when you were a preemie baby. I know you don't remember that though."

"Uh huh. I was small but not as small as Meghan. Right?"

"Yes Grace." I turned my attention to the speaker, but Grace tapped my left arm to get my attention again.

"Mommy, why does Mr. Marvin need oxygen?"

"He has Alpha-1 just like you and Meghan do Gracie."

"But we're not like that Mom," she said with uncertainty and a worried expression.

I'm pretty sure I took a deep breath as I searched for an appropriate response within my brain. These moments often dizzy me and jab our Alpha-1 reality squarely into the present.

"You're right, Grace. Your lungs aren't sick, but remember that we are very, very careful to take care of your lungs. We don't go outside on icky air days. We don't go around cigarette smoke. We keep you away from cleaning products."

"Uh huh, I remember. Did "they" do that Mom?" Grace said pointing to some of our Alpha friends.

Another deep inhale, and I replied, "Gracie, sometimes people with Alpha-1 get sick lungs no matter how careful they are with their lungs, but it is still important to take care of ourselves."

"Will my lungs will get sick Mom?"

"I hope not honey. That is why we take such careful care of you and Meghan. You have Alpha-1 too. We want you to have a long healthy life with good lungs and a good liver." I pulled her into a snuggle, and hugged her.

"I hope I don't get sick lungs Mommy. My liver got better when I was a baby."

"Yes, Grace. We all hope so too. I don't want you or Meghan to have sick lungs or livers. We hope the doctors will figure out a way to make Alpha-1 go away."

Tears soaked my eyes, but I turned my face away to shield her from my biased emotions.

The day had come. I wondered when it would, but here it was. Grace's inquisitive nature had matured enough to probe a little deeper into Alpha-1. I'm not sure she completely understands, but it is in these moments where I help shape Grace's perceptions of Alpha-1. It is hard to balance reality with my natural tendency to shield her from Alpha-1.

Meanwhile, the speaker was featuring different oxygen units, and our Alpha friends were asking questions along the way. Grace and I had been using hushed voices and whispers, but my thoughts were shrieking inside my head.

Why do I have to have these conversations? Why do my precious miracles Gracie and Meghan have to incorporate Alpha-1 into their lives? I know that there is no point in dwelling on the answers to these questions, and thankfully the unending love I have for my girls usually distracts me from their Alpha-1.

I suppose these kind of conversations are what keeps bringing me back to our "Alpha Friends" meetings.

Miss you Timmy

I miss you Timmy. I know you've grown up and are a man, but you'll always be loved by your big sister.

If telepathy exists, know that I'm sending good thoughts and vibes that will help you during your Infantry training.

What do you think?

How do you like my new blog header? I made it myself with a little design start from my former blog template.

C'mon lurkers! De-lurk please.

Perhaps

The chairs were scattered across the patio, and the table umbrella was open to shade us from the hot sun. The refrigerator was full of picnic foods, and my family members were about to arrive.

We had been leading up to this day for nearly three weeks now, and the anticipation had been building. Today was the last day before Tim left for Basic Training. Would this be one of the last wonderful memories we would have? What would it be like to have a brother in the Army Infantry? What will become of him? Where will he end up? Iraq? Afghanistan?





All of these thoughts flooded my brain as I went about the normal preparations for a backyard party. I felt distracted, and conflicted. I'm incredibly proud of my precious brother, but yet, I'm decidedly fearful of his new found choice. Perhaps that is my own fear? Tim is entirely resolute in his decision. Perhaps I need to remember that?

My parents became adults during the Vietnam-era, and those times were etched into their memories. It influenced their upbringing of me and my siblings. My mother's high school boyfriend died in Vietnam during his second tour. His helicopter was shot down. Mom later met my dad, and he joined the National Guard in an effort to control some of his own destiny. His draft number would have sent him directly to Vietnam. Perhaps my parents' influence is what puts me in fear of having a brother as a soldier?

Dad was a soldier, though. He served in the Army Reserves for seven years. Why can't I get past this? Perhaps it is because of what my father described of his years of service? I'm not sure why I'm so conflicted? Perhaps it is because Tim's future seems so uncertain to me? His safety will not be secure. Having two children with Alpha-1 has shown me how incredibly fragile life is. Why would Tim choose to put his life in danger on purpose? Some would say he is incredibly brave or patriotic. I know he is brave, but he is also my dear baby brother patriotic or not.

My fears kept drifting in and out as I prepared for the picnic. As my two brothers and two sisters arrived, we began the party just like any normal family gathering except that this was a send off party for Tim. Mom had flown in from California. Dad and his wife stayed home, but would be in town tomorrow. I was disappointed we all couldn't be together. I just wanted one more time with my entire family. For me, it was important to show Tim that we were united in our support of him.



It was a beautiful day. Flowers decorated my yard. Dragonflies and butterflies flitted and hovered about. But what made this day so glowingly beautiful is how I felt in my heart. The girls played with their cousins. My mom told stories. Charlie and Bob played a lawn game. We ate good food. My siblings and I teased "Timmy" as we have done for years.

"Timmy, you're in the Army now!"

With a Cheshire grin on his face, Matt asked, "Tim, so are you going to call me a civilian now? Cuz if you are, I'm going to open up a can of civilian whoop arse on ya." We all giggled in response. For me, it was a nervous giggle. I wondered if anyone else felt as I did.





Grace pulled me to the side and whispered, "Mom, is Timmy going to die?"

"Grace, I don't think we should think that way. We need to know that God is going to take care of Timmy. We need to believe that God will do what is best for Timmy. We need to believe that Timmy will be safe. Can you do that? It is important to keep good thoughts for Timmy."

Meghan overheard our conversation and joined in with, "Yeah, Grace. God is always in our hearts. He is in Timmy's heart." My eyes pooled with tears as she said that. How could my 4 year old have figured this out so well? Meghan is so much more enlightened than me using an adult's logic. Tim serves as her Godfather, and I think Meghan is connected to his soul in a different way than I am. Perhaps God was speaking through Meghan? My love for Tim often blinds me.

We enjoyed the day, and I didn't want it to come to an end. My daily life calls me back to the routine, but I resist in writing this entry. I soak up the moments, hoping this won't be the last of our whole family get togethers for quite a long time.

Ever have one of those days...

Ever have one of those moments where you feel like you've bitten off more than you can chew

I'm tired and overwhelmed by Grace's upcoming surgery, Timmy going off to basic training, my job projects, volunteer activities, and family obligations. I know that this too shall pass, but can a girl get a break for a change

My keyboard won't let me use any special characters either so I can't insert question marks. Really, that is not my issue, but seems to be the cherry on top of life's pressures for the day.

I'm off to bed now for some rest, which I hope helps. Goodnight.

Another Check-Up

Yesterday, Grace was supposed to visit with a nurse practitioner for a pre-operative check-up. When Charlie brought Grace in the office, he caught Grace's surgeon's attention and said, "You may want to see Grace's cyst."

So Dr. M performed the pre-op check-up instead of the NP, which made us feel like he really cares about Gracie. He looked at the cyst, and said it is in a good position in her throat for the surgery. He'll only have to cut once instead of twice. Yeehaw!

I thought it was kind of funny when he mentioned that the cyst had gotten a lot larger, likely from the infection. It always makes me giggle when medical professionals try not to alarm you. Well, we clearly can see that it is now golf ball sized. haha He mentioned that there is always a risk that the cyst could grow back. He said, "My goal is to only have to do surgery once on Grace." Yes, that would fabulous. :)

So, Grace still has many days left of taking the augmentin to try to clear up the infection. She may need to be on it all the way up to the surgery date of July 23rd.

The really great news is that Grace will have a very easy process going into surgery. We learned that she'll take oral Versed before surgery to ease her fears and make her feel quite calm and happy. Next, they'll take her back into the operating room, where she'll receive a mask to inhale her anesthesia. Once she is under, they will place her IV.

For a child with sensory issues, this could not have been better news. Pokes and IVs send Grace into fight or flight mode. We are so relieved that Children's Hospital has such child-friendly procedures. Gosh, that is just so much of a comfort to us.

Obviously, we'd rather not have Grace need to have surgery, but so far, we're pleased with the care she is receiving. Dr. M ended the visit by speaking directly with Grace, who was obviously nervous. He said, "Do you have any questions for me Grace?"

She shook her head no, and he said, "You are going to do great, Grace. Would you like a sticker?"

A Barbie sticker later, we were walking down the long hallway to our car. As Charlie and I watched Grace skipping down the hallway, he said, "Our baby."

Those were my sentiments exactly.

Infection Update

The augmentin seems to already be making the swelling go down. The redness is fading too. Grace is not very pleased with the taste of the medicine, and unfortunately gets to put up with it for another 9 days, twice a day.

If Grace has an active infection, they won't do the surgery. We have between now and the 23rd to get this nasty bug out of her.

Thanks for all the prayers and good thoughts.

Jen

Grace's Cyst is Infected

The last couple of days Grace has been telling me that the cyst in her throat has been painful. I've been paying attention to it but from what I could tell it didn't appear red and the inside of her throat wasn't red either. That is, until today.

Today she has a bright red sunburn like neck. So, Charlie called the pedi. He called us right back on a holiday weekend, love him. Anyway, he prescribed Augmentin to see if he can knock out the infection. If it doesn't appear to be responding, he is going to (shock of all shocks, wow, luv him) make a house call tomorrow.

So, I'm hoping we can knock out the infection. Pedi was sufficiently alarmed enough to prescribe drugs without seeing her. Anyway, her surgery to have the cyst removed was supposed to be July 23rd. It may or may not be sooner. We'll see.

Please keep her in your thoughts. Thanks much!

Now, I'm trying to clean up my messy house just in case he has to make a housecall. haha

America's Birthday

Some days, pictures really are worth more than words... and today was one of those days. God bless America, and God bless you all today. Enjoy!

Parade watching...









Backyard partying with cousins, aunts, uncles, and grandpa...











Glow stick "lightworks" for my girls who are a bit too afraid of the loud booming fireworks on the 4th...