Life with Kirin, Cooper & Griffin

Farewell 2010

2011-01-01T16:57:00.000-08:00

Some of you know the trials and tribulations of the last six months since my last post, some of you don't. In a nutshell, what I thought would be our life of four since the loss of our sweet boy Griffin, has turned into a life of the three of us, making the title of this blog even more appropriate. In the year that was 2010 we have all lost so very much and I sit here pondering, still, trying to make sense of it all, trying to understand what exactly has happened, and most of all mourning the loss of the family I thought I had and building, nurturing and finding my way with the wonderful, beautiful one that I do have.

My Kirin and Cooper continue to grow and thrive. We have celebrated their 11th and 8th birthdays during the latter half of the year. Cooper is in 3rd grade and Kirin in 5th- that first day of school this year was a tough one, as we only had to turn down the big kid hallway at the school! I continue to be amazed at their tenacity and ability to handle everything that has been thrown at them over the course of this year. I take great pride in their acceptance and tolerance of their undeserved situation, their understanding on a level appropriate to them and the constant unconditional love they continue to provide me with. They are a source of great strength for me and I hope, I am to them. They still smile and laugh. They are still kids, despite the immense amount of growing up they have had to do this year.

I have come to realize that my children, all three of them, have taught me great lessons this year. Griffin's occasional visits to me, to remind me that I was and am a good mommy, are a great source of strength. His death, while overwhelming and painful, was for the better of him. I find no need to question why anymore. I have come to believe that Griffin believes and wants nothing but happiness for all of us. He has taught me that life is to be lived to the fullest, each and every day. Embrace the good. Embrace the love wherever you can find it. Roll with the punches and find happiness in each moment. Have fun and love as much and as often as you can. Smile. Smile big. I'm trying to instill this in Kirin and Cooper. I think I'm succeeding too. They remind me to giggle and laugh, as they grow and become the remarkable human beings they are. They are so very wise and insightful. I am so very, very grateful to have them in my life.

2010 will be a year none of us will ever forget, but most of all, I hope what we remember about 2010 is the love and the joy that was brought to us by the presence of my son on this earth and the lessons he taught us about living. It's what gets us all through every day and reminds us to smile, no matter what the circumstance.

This is the final post I will make to this blog. I feel it's the best way to pay homage to my son, and remember the life that existed while he was alive. I'm starting over, and I think starting a new blog is a good way to do so.....if you are interested drop me a line...

I wish you all the best in 2011, thank you immensely for all of your support, love and prayers over the past 3 years and hope that you take a bit of my Griffin with you for the rest of your lives and remember....Love as much and as often as you can and Smile. Smile Big :)

Much love,
Tiffany

In Honor of the Boy.....

2010-06-07T13:05:00.000-07:00

Hi all. Griffin's birthday is fast approaching and the kids and I have had an idea of what we want to do to celebrate. This is where you all come in.

We would like to ask that each of you who cares to join in, get a helium balloon on June 19th, 2010. Each of us will have our own, attach a note to it for him and at 4:15 EST we will release it from our yard. We ask that you do it from your own backyard or front yard wherever you are in the world at the same time. So those of you in Thailand, Finland, Turkey, England and the all corners of the US can send him birthday wishes of your own. We'll be singing happy birthday as we let them go and reminding our Griff how very much we will always love him.

We know his sweet smile will be the sunshine from heaven.

Love,
Tiffany

The fight to slay the beast

2010-05-21T11:43:00.000-07:00

Grief is a big, horrendous, ferocious, ugly creature. It seeks to maim you, throttle you, scratch you, disembowel you and downright strike you down. Finding the courage and strength to fight back, to stand tall in the face of it's viciousness is an endeavor you cannot prepare for or properly brace yourself against. It attacks in ways you never imagined. You hurt in places you didn't know existed. The wounds continue to reopen again and again. Knowing they will heal in time does not really help. Time is the only viable method of engagement and defeat. Time. The moment to moment living you thought was gone is not. Ten minutes is a good measure. Okay now the next ten. Now the next.

I am determined to slay the beast. To be the powerful, strong, loving woman that I am. While my wounds are raw, my resolve is greater than any pain I may be experiencing now. I will prevail. It is my only option. My Griffin told me so.

I may not write much in the coming weeks but knowing you all are out there thinking about us is so important to me.

Tiffany

Maybe I need a tattoo....

2010-04-23T06:17:00.000-07:00

So I have been pondering this as of late....if you lose your spouse/partner, you have the title of widower. You have been widowed. If you lose your parents, you have the title of orphan. You have been orphaned. When you lose your child, you are still a parent. The title did not change. When you say it, there is no mention of the asterisk that should be placed next to it. We go in and out of stores, work, restaurants and no one knows that I should have a baby in tow, cruising in his car seat or riding in his stroller.

This has brought me to the the conclusion that I need to tattoo it across my forehead for all the world to see. Don't forget me. Don't forget my pain. Don't forget my son. The whole world should know that my Griffin is no longer with us here. The sadness in my eyes is there for a reason. One day it won't be as prominent but for now, everyone should know. Everyone should be kind and gentle to all four of us. We are tender and raw right now. Everyone should pay attention to that. Don't cut me off on the road and expect me to be happy about it. Don't make a joke and always expect me to laugh. My heart hurts and I have no label to share with the world.

Okay, so maybe a tattoo isn't the solution. Maybe just a Miss America Ribbon replete with the title, "Angel Griffin's Mommy" or "Mrs. Mommmy*" I could wear it for a little while right? I think I'm entitled. I think Griffin is entitled. I miss him terrible. I miss what our family was before this happened. I miss everything. I knew this was going to be hard, but I had no idea what the hard was going to be. I think I thought it would just be the missing of Griffin, but I was so wrong. We are each dealing with this in such different ways and it makes it so awkward to be around each other. The kids telling me that Griffin is walking along side them on the way to dinner almost irritates me. I don't tell them that, but it makes me hurt. Drew wants to be alone and I can't stand to be alone. I miss my evenings with Griffin and our physical contact. He would cuddle me or play with me on the couch. Now I sit alone. I have to ask the big kids to hold my hand on the way to school. I need the touch.

Yup, the banner would probably work. They pass out new mommy badges to wear, and big sister/big brother ones too. Maybe I need to make one to wear on the outside to match the one on my heart.

Tiffany

Major Suckage....

2010-04-16T11:59:00.000-07:00

Okay, so last week the kids got up every day without a single issue to go to school (apart from the normal moaning about getting up for school.). We weren't late for school a single day, and we walked every day! I had taken to the 'walk it out' theory for myself.

This week is a totally different story. Monday we were dragging. Tuesday, I let the alarm go off so long it shut itself off. When I finally got up at 5 till 8 to wake the kids up, Kirin was sitting in her bed reading a book, knowing full well she should be at school at that moment. Cooper was rolled up in his comforter bellowing, "it's too hard to get out of bed' over and over again. Drew was still asleep. I made them get up and got them to school at about 830. When signing them in I wrote in the slot that asked 'reason for being late' - Grief. And I thought, Go ahead. Question it. Ask me about it. I dare you..... Wednesday was much of the same, minus the late part. I decided that we have to get away for a few days. So, we are leaving this weekend. Beach. Salt air and sunshine. Away. Breathe. This has given the kids something to look forward to and we talk about it whenever we're together. What are we going to do? What does the hotel look like? etc. Seems to be an excellent distraction already and we haven't left yet.

The kids have had the benefit of the same routine since Griffin was born. We insisted on it. They went to camp everyday in the summertime and school everyday otherwise, so going back to school should be normal for them. Drew and I don't have the luxury of some routine to return to. Well, one that we can remember how to do anyway. So, for me, going back to work every day is so foreign to me that I am exhausted after a few hours. Not to mention how strange it is to leave the house with no one in it, or be in it by yourself. But, routine is not routine, obviously, for any of us right now. It's major suckage. It sucks to leave the house, it sucks to be in the house, it sucks to have fun, it sucks not to have fun. It just sucks. This whole thing just sucks and it will for a while. Maybe even a long time. At least we're in it together.....

So, thanks to many generous, kind hearts in our department at work as well as a fellow alumni of ours, we are able to jump the Grief Relief Train for a few days without worry. Hopefully we'll be able to relax a bit, smile a lot and remind ourselves what it's like to be the four of us again. We're not the same people we were 3 years ago, but we're still a family and we've been blessed with knowing an amazing little boy for a short time. We wish he were here with us to play in the surf, but we know he'll be watching us smiling instead.

Love,
Tiffany

Two Weeks Gone.

2010-04-08T18:56:00.000-07:00

Drew is finding some solace in music, Kirin and Cooper are finding solace in the birds and the sky- telling us at different times that Griffin is singing to us with the cute bird on top of the speed limit sign or he's made the clouds part and the sun shine. I find myself quoting movies. Today, I felt one with Forrest Gump as I walked in circles around the track. When he takes off running after his mother dies, and runs and runs and runs. I kept waiting for people to show up in droves walking behind me, but finding only a deeper meaning to why Forrest ran by himself. Steel Magnolias, Contact, Sleepless in Seattle and Forrest. The feeling of needing to scream is beginning to bubble up to the surface and I'm wondering where my Weeza is.. I need someone to hit. The world continues to spin, life goes on around us and all I want to say is STOP. How is it possible that just two weeks later we continue to do what is 'normal' and I feel like how dare we. How dare we act as though he never existed! How dare we eat dinner out, do the laundry, go to work, go out to lunch, dare to smile?

The medical supply company came on Tuesday to pick up Griff's feeding pump and other necessities. I didn't realize how hard that was going to be. In fact, it completely knocked the wind out of me. I couldn't go to work. I spent the rest of the day in a daze and ended up going to bed at 9:30. And slept. Until the next morning.

I am so very tired. I finally realized why. I really haven't slept in nearly 3 years. I have 'coma-ed' as I have called it in the past. It was necessary for my body to rest as long as possible every night, and so I did. My head would hit the pillow and I was out, no dreaming, just out but constantly on alert. Constantly listening for his call to me. Constantly worrying. Constantly waiting. We all were. Now we are all trying to catch up. Catch our breath. Figure out what has happened over the past few years and figure out a way to go on without him here. I am trying to figure out how to turn off the part of me that was always anticipating the next thing- the next dose of medicine, the next feeding, the next diaper change, the next doctor appointment, the next..........I can only imagine what goes through Drew's head every moment now as well, or the kids. We have sent them back to school this week to try and get things back to a normal routine for them. They seem to be handling it okay, but I wonder if I'm feeling this way about normal, is it too much for them? But, at the same time, I know they will tell us in their own way if it is, in fact, too much.

So, that's where we're at. Straddling two worlds again, normal and paralyzing grief. Listening to each other and the whispers of Griffin still surrounding us- some that make us sad, some that make us smile. Trying desperately to deal with this seemingly never ending ache that exists in our hearts, knowing we have to, but it's okay to succumb to it too. In the meantime, the kids and I blow kisses to Griffin every night in heaven, telling him how much we love him and miss him, share one favorite thing of our day and remind ourselves that no matter what the day has brought our way, we will never forget him or how important he is to all of us, always.

Tiffany

One week later.

2010-04-01T20:50:00.000-07:00

I don't know really what to write today other than I know I need to write something. But I also feel like if I write something I'm making that final video of him scoot down this page and away from everyone's memory.

Here we are one week later and it all seems so surreal still. Drew and I picked him up from the funeral home today and brought him home. It was the longest Griffin had been away from home since he came home from the NICU. Very strange. I thought it was going to be bizarre in some way to have his ashes here at the house but I'm finding this remarkable comfort in knowing that he is again under our watch, safe at his house with those of us who love him the most. I know 'he' is not in there, but it does bring more comfort than mortification. I was worried about that. I thought the kids might wig out a bit too- but they surprised me, as they continually do with all of this, and have taken it all in stride. The four of us stood around his beautiful bamboo box and cried together, again, knowing that he was here, but not. Feeling the moment and knowing that we can move on together now. We are whole again, in some sense....

We are all slowly starting to not look for him in the living room, glance at his favorite spot on the floor to check on him or feel the need to find him for a quick hello and love you statement. The "Shhhhh Griffin is sleeping' makes it to the tip of my tongue at least 5 times a day. This is not easy to do. His presence is definitely missing. His occasional 'shout out' to make sure we remembered he was here is gone. The silence can be deafening at times. The kids still get out of the shower and shout, "Griffin, your turn!" I have boxed up his clothes, most of his toys and blankets and Drew has kindly taken the crib and changing table down. We still have things here there and everywhere that are his that I intend to share with others. Some for the physical therapy center, some for friends, some yet to be determined. I feel a kind of accomplishment with each thought and task, but when completed am overwhelmed by sadness and tears. I try not to plan too much for each day to be sure I don't collapse. Each day I go to the mailbox and find cards from beautiful people reaching out to be sure we know we're not in this alone. I am so very thankful for that.

I was with him when the Griffin who smiled and giggled, laughed and loved, left this earth, holding him close to my heart. I was with him his entire life. Not many mothers have the opportunity to do that. I am so very grateful to him for letting me know how much he loved me and appreciated me. To know in my heart that we did everything in our power to keep him safe and loved. I hate that I will never know what he would have grown up to be, or what he would have looked like at my age, but I do know I find great joy in knowing that he is now the toddler he could have never been here. Eating cheerios one at a time, playing with his stuffed animals and drawing with crayons on the white walls or clouds of heaven. He blessed us every day he was here, he never had the terrible twos, always listened to what Daddy and I told him. He never told us no, in that defiant 2 year old (or 10 year old) tone. I would have given anything for him to do so, but I understand it just wasn't what the universe had in store for him. No, it's not fair, it wasn't right and there is no one on earth or otherwise who can explain to us why. For a child, there is no answer that would satisfy the question. Ever.

So, I am so lucky to be his mother. I will always be his mother. And when people ask me in the future how many children I have, my answer will always be three. One just happens to be an angel.

Thankfully and with love,
Tiffany

Home March 26 ,2010

2010-03-26T08:40:00.000-07:00

Calling hours will be Tuesday, March 30, 2010 from 2-5 at the James' home, 114 Karen Drive, Clemson. A memorial service will be held at a much later date.

No flowers please.

Today. Home. March 25, 2010. 12:10 p.m.

2010-03-25T15:38:00.000-07:00

Griffin got his wings today. Fly my sweet baby, fly.

Griffin Reilly James, our brave boy, was freed to finally run, play and even fly on March 25, 2010 after nearly 3 years of amazing tenacity, hope, love and many small miracles. Griffin's final days were spent at home, his favorite place, with his favorite people, his Mommy, Daddy, brother and sister.

While Griffin never had the chance to tell us how much he loved us, he let us know with every smile and giggle. His sweet disposition and unique personality touched the lives of so many during his short but very memorable life and we will all hold him close to our hearts every day for the rest of ours.

Griffin is survived by his adoring parents, Andrew and Tiffany James of Clemson, SC, best friends and siblings, Kirin and Cooper, Grandparents Barry and Melinda Lindstrom of Chandler, AZ, Uncle John and Aunt Carole Romeiser of Knoxville, TN, Uncle Ryan and Aunt Theresa Lindstrom of Chandler, AZ, Aunt Sammi Lindstrom of Chandler, AZ, Aunts Ray Henry and Diana Hall of Portland, OR, Cousins Trent, Eric and Paden Lindstrom and Great-Grandmothers Lindstrom, King and Cornwall.

Griffin has 4 great-grandpas, 1 great-great grandma and mommy's cousin playing with him in heaven.

Home March 18-23

2010-03-23T08:57:00.000-07:00

Had a few computer issues over the past few days, making it impossible to get an update done. Well, not impossible, just irritating. So, you get one today, but it may be a bit disjointed.....

Griffin continues to spend most of his time sleeping. His week of PICU stay symptoms have started to appear over the past few days- lethargy, whining, blood where it shouldn't be, general floppy-ness (he's usually very stiff- called tone in his muscles) and sleeping more and more. Saturday was a beautiful sunny 75+ degree day here in the upstate, so we spent the day outside working in the yard. Griffin slept ALL DAY. He was awake for about 30 minutes first thing in the morning- discovered by Kirin. He laid on the floor and slept hard. Cooper watched basketball and gave us periodic updates on scores and Griff's status. He was still asleep was the common refrain. While digging up my garden bed, I pondered how this was a glimpse into our future- a future that is knocking at the door. Made me dig harder and with a pick axe (I felt that the next day...). Then it made me peaceful but sad at the same time. We're going to be okay. It's not going to be easy by any stretch of the imagination, but we're going to be okay. Life will go on. He will always be in my heart and I'll look for periodic updates wherever I can find them, but we will be okay.

Kirin actually took Griff out of his crib before we got up for the first time ever. This can be a difficult task for a normal 10 year old, but with Griffin's feeding tube and pump it makes it quite a cumbersome task if you haven't done it before. She apparently handled it like a seasoned pro. More indications that she is thinking what we think she's thinking. He's short on time and we all need to hold him for as many moments as possible.

Cooper continues to grapple with the normal everyday and the impending doom we are all anticipating. It appears he can get up each morning and shove the thought of it all to the back of his mind in order to smile, go to school, play, do chores etc., then by bedtime he can't push it out anymore and melts down with the weight of it all. Last night, he cried genuine, heartbreaking tears, stating how he didn't want him to go but understands it's the best thing for Griffin. Remarkable for a 7 year old in my opinion.

Drew and I continue to do what needs to be done and try to sleep as best we can to keep up our strength for each other and the kids. It seems we take turns, subconsciously, with bad days to be sure we can hold each other up when necessary. He has surprised me just now by coming home for lunch, so I'm going to go and enjoy the moment.

One last thing, this is a poem a friend of a friend sent me after she learned of our journey and began reading this blog. I find it breathtaking.

Love to all-
Tiffany

The caterpillar dies so the butterfly could be born.
And, yet, the caterpillar lives in the butterfly
and they are but one.
So, when I die, it will be that I have been transformed
from the caterpillar of earth to the butterfly of the universe.

Home March 15-17

2010-03-17T19:24:00.000-07:00

So, I got up this morning, made lunches, got the big kids to school, came home and crawled back in bed with a still asleep Drew. We didn't wake up until 12:30. This is not normal for us- in fact, I probably haven't slept that late since high school (and we all know how long ago that was...) Griffin slept until about 4:45 this afternoon. He woke up briefly a couple of times before that, for about 15 minutes at a shot, but he really just slept. Which is what he's been doing for the past couple of days. Sleeping the night, into the day...It's hard to do anything productive, because you are waiting for him to wake up....but today, I kept checking to see if he was still breathing. He is so still while he sleeps...

Cooper continues to need extra snuggles and love from Griffin. Yesterday, I had to explain to him that Griffin would be cremated, not buried in a cemetery. Luckily, the therapist was here to help me with that. It needed to be discussed as a result of an activity she was doing with the kids involving messages in a bottle. I want to be as open and honest with all of the details for the kids, to be sure that if they are scared of something we can try and deal with it from the beginning, rather than have it fester in their minds and warp into something more debilitating in their future lives. He seemed to understand, but you could tell he ruminated on it all night. When it came time for bed, he started to cry as he laid with Griffin. He stood up and whispered to me, "Mommy do they have to burn all of his bones? Can I keep one with me forever?" Oh. My. God. What have I done to this poor 7 year old child? I explained to him that was not how it worked. Then I told him that was why we made our keepsake touchstones, so we would have a unique part of Griff with us always (art project with Candice. We imprinted Griff's thumbprint on one side of a clay stone, and ours on the other. It's fired and made so that we can wear it on a necklace, or string to carry). He then panicked not knowing where his were (we made two each, just in case). I found them for him and he went to bed, but he was still crying. Tonight, he said, crying, I'm scared about Griffin. I just don't want him to go away so soon. Drew asked if he knew when 'soon' was, and he said he didn't know, but that he just didn't want him to go away so soon.

Kirin isn't crying a lot about it, but she is taking every available opportunity to snuggle with Griffin. She handily picks him and carries him to wherever she would like to be and holds on tight. If it's dinnertime, she asks to wait to eat. She doesn't mind eating alone, if it means she can be with him for 15 more minutes. We just let her.

I think the kids have a sixth sense about all of this, and they have come to the realization that Griff will indeed leave us very soon. I trust their instincts, as they have always seemed to be right. Their change in behavior over the past few days indicates to me that they know something is about to happen and they are trying their best to deal with it.

I am going to sign off today with some beautiful words written about my Griffin by my father. As I am out of videos to share, I hope to share thoughts from others that have touched me over the time we have had Griff in our lives with all of you. Thanks again for all of your love and support.

Tiffany

"Our Griffin's Story"

Just under 3 years ago while traveling at 70mph across the California desert, word came to us that our sixth grandchild would be born 3 months premature. His mother chose to name him Griffin after the half-lion half-eagle creature of “divine power”. With a tiny 1.5 pound body that fit in the palm of your hand, Griffin amazed everyone with his ability to survive the trauma of two surgeries that would have ended the life of a mere mortal. And while, his body and mind were now denied any semblance of normalcy, nature allowed him to keep the heart of lion and the free spirit of the eagle.

Griffins are also known as guardians of treasure. And while we now, sadly, prepare for him to leave his mortal confinement, we can take great comfort in discovering what his legendary life force will still accomplish.

Home March 11-14

2010-03-14T19:57:00.000-07:00

Not too much new to report, which would be why it's been several days since my last post. The waiting continues, Griffin spends several hours a day asleep, and more often than not, the rest of the time awake staring blankly into the void. He did manage a few smiles for his cousins Trent and Eric today which caused them to repeat whatever face or noise they had made about 100 times each in an attempt to get him to smile again. Unfortunately, they did not have much luck, but they had fun trying!

Ryan, Theresa, Trent and Eric have been here this weekend from Arizona. All four of them have taken turns loving on Mr. Griff and enjoying all the time they can with him (in between building a basketball hoop in the backyard and waiting for selection Sunday!). It's been a wonderful distraction for Kirin and Cooper, there is no doubt about that, and a lovely time for all of us. They leave tomorrow, and once again, I find myself saddened not only by their departure but with a heavy heart knowing this is the last time they will see him.

Cooper insisted that Griffin tuck him in tonight. I usually lay Griff on the kids tummies to 'hug' them goodnight and he usually fusses and points out he is uncomfortable. Not tonight. He laid heart to heart with Coop, quietly, and really seemed to hug him. Cooper started to cry. Cry and pat and squeeze. Cooper just kept saying how hard it was to talk about it as tears ran down his face, but he refused to let go of him. He rubbed Griff's back and patted some more. I will never forget the look on Cooper's face- he knows Griff's time with us is growing short. All I could do was cry myself and tell Cooper that it's okay to be sad and just tell him you love him. His response was- it's too hard. I knew this was going to be hard on my Cooper, but I saw him grow up in that split second, too soon. To know how this is going to effect my Kirin and my Cooper for the rest of their lives is, well, so difficult for Drew and I to contemplate I can't even put it in words.

To quantify the hurt in our hearts is impossible. We continue to do the things that need to be done and stop to love on Griffin and each other as often as we can. Please continue to keep us in your thoughts- we appreciate it more than you can imagine.

Much love,
Tiffany

Home March 8-10

2010-03-10T20:51:00.000-08:00

So about an hour after my post on Monday, Mr. Griffin woke up. Really woke up. He stayed awake all day, until I finally made him go to bed around 11:30 that night. He didn't do much. Stared a lot, but he was aware of his surroundings for the first time in a while. Tuesday, he woke up smiling, went back to sleep for about 3 hours and then was awake and alert. Yes, I said alert, for the majority of the day. He proceeded to talk to Kirin and I most of the afternoon, complete with belly laughs toward the unknown spot in the sky and tons of smiles. Genuine Griffin smiles. The hospice nurse came and couldn't believe how different he was from last week. His color had even come back. I enjoyed it. Drew enjoyed it. The big kids reveled in it. But, honestly, in the back of my mind, I was wondering, just how long will this last???

Got my answer pretty quickly. Griff woke up last night at about 11:45 throwing up. Drew got up with him, and let's just characterize the night as long from then on. Drew did not come back to bed until 5. He had fallen asleep with Griff on his playspot on the floor in between bouts of various issues...This morning when I took over Griff was moaning and whimpering in his sleep. I couldn't take but about 15 minutes of this and had to succomb to giving him morphine. He spent most of today completely out of it, or asleep. I just sat on the couch with him for most of the afternoon. He laid on my chest and nothing else moved. I had to keep looking down just to be sure he was still breathing, that's how still he was. He's in his bed now and I'm up making sure we don't (hopefully) have a repeat of last night. He's suddenly refusing to lay on his side or tummy(he has slept on his tummy since he came home from the NICU). This is very strange for us. Why this surprises me, I have no idea. Nothing about this is normal. Nothing about this is familiar.

We spend our days straddling two worlds- that of normal, everyday, have to be dones and the hold him till he can't stand it anymore. I go to the grocery store for milk and the world seems to be zooming around me while I'm in slow motion. Drew tends to go to Lowes or Home Depot to just wander and walk but feels the same. The kids still have to get to school, the laundry and dishes still need to be done. There is no choice in that really. We go to work only to put our minds somewhere else for a while, but it's almost harder to return to reality when we leave. It's like you are learning Griffin's fate all over again. I felt like I got hit with a baseball bat in the chest last week when I left work to come home. It's so completely bizarre. But, we do try and find the humor in some of it and we rejoice in the goofiness of our big kids. They both say some pretty funny stuff, not that I can remember any of it at this moment.....

Today, I watched all of the videos in order and sobbed. It's so wonderful to me to have these photos, to remind me of all the time we have had with our sweet boy. So, the one I post today is mine. The words to the song are so unbelievably appropriate, they take my breath away.

Again, thanks to everyone out there thinking about us, supporting us in each of your own ways. We know you are there, we feel the love, and boy, do we need it.

Love and hugs to all,
Tiffany

Home March 5-8

2010-03-08T11:38:00.000-08:00

The last few days have been more of the same. Griffin continues to sleep, wake up occasionally, interact a little bit and go back to sleep. Sometimes he spends time moaning, sometimes he spends time playing with a toy. No way to tell which way it's going to go. Everything continues to be new to us, but with some of the old stuff mixed in. It's hard not to react to new stuff and call someone to ask how to fix it. It is required that we sit back and let nature take it's course, but it's so very hard to do considering how long we have done everything in our power to fix what we can. I've gotten a couple of smiles from him today, which was a surprise, so I feel very lucky.

Poor Kirin has a stomach bug so she's home from school today. She's actually sleeping right now, trying to recuperate from her 1:30 wake-up call. Daddy and I are still recuperating too- yuck. Luckily Cooper and Griffin slept through it all.

Anyway, we're into another week of March. Griff is still with us for another Monday. We'll enjoy every moment we can. Enjoy Drew's video. He picked the song.

Much love to all,
Tiffany

Home March 3-4

2010-03-05T07:03:00.000-08:00

One word, Agonizing. The waiting is agonizing.

Griffin sleeps, so we wait. We watch and anxiously await him opening his eyes in recognition for a fraction of a second. We recognize we have reached the point where his body is tired and he sleeps for hours on end. We feel like we're in a suspended state of animation. I'm starting to fray at the edges, so I can't put a happy face on all the time. Drew is having trouble sleeping. Big kids are doing what they can to get by- they're remarkable really. Both got fantastic progress reports this week despite all of this business at home and in their heads. Cooper played an awesome game of basketball last night. Kirin played Goldilocks in a classroom play, as well as one of the bears. Don't know how that worked, but it made her have a great day yesterday. But, we wait.

Oh, and Drew's sister Ray is pretty sick now too, so please, save a thought or two for Griff's auntie out in Oregon. We're pretty worried about her!

So, while we wait I continue to make videos to share. Here is the latest featuring all the peeps from Drew's side of the family with our sweet boy. Hope you enjoy it.
Love,
Tiffany

Home February 28, March 1-2

2010-03-02T19:39:00.000-08:00

Today was a long day. Much longer than it should have been. No particular reason other than I just looked at the clock and thought, jeez is is really only 10:30? Was that this morning that I saw the hospice nurse? Yeah, I guess it was. Kids came home early due to snow and I made lunch. Griffin stayed in bed until about 2- he had been sleeping on and off all day(as he has the last two days) until the massive exploding diaper and he needed a bath. Really needed a bath. A really long day.....kids met with Candice, the therapist, and we determined that they need to talk to her separately. Kirin seemed to be getting hostile as she started to delve into the concepts and thoughts being brought up in their conversation, and Cooper seemed to revert to more childish behavior. When she separated them, they had productive and informative conversations. They are both internalizing way too much because if they don't talk about it, it's not real. Maybe it won't happen. Candice explained to us that this is normal and she's here to get them through this. A heavy load for a very long day....Drew and I went to the funeral home this afternoon. Not an experience I would like to re-live ever. I made it to the car before I had a meltdown.

After discussing what would happen when they get 'the call' I was reminded of one of my biggest fears- How am I suppose to let them take him from me? I can't leave him alone or with strangers. I nearly hyperventilate every time I think about it. That moment is haunting me before it even happens. I try not to contemplate it, but when you are faced with urns and where to publish obituaries and paperwork and the required business of dying, it consumes you despite your best efforts.

I was given a pamphlet today on the general stages of death. We've been noticing all of these new things that Griffin and his body seem to be doing. Things we've never seen before and don't necessarily know how to handle. These things seem to line up with the page on 'things that happen 1-2 weeks before'. Kind of had that feeling in the pit of my stomach. So did Drew. Don't know if it's parental instinct or practicality, but regardless, we both have the same feeling.

So, without the heart wrenching and gruesome specifics, this is where Griffin is. He's sleeping right now next to me. Not quite ready to put him in bed yet. Selfish reasons. Can't imagine life without him here, so for tonite, I think, I will wash this long, heavy day out of my head and cherish this moment he is still next to me.

Tiffany

Home February 25, 26,27

2010-02-27T18:37:00.000-08:00

Okay so it's three days later and I'm confused again. Griff slept, literally slept, from Weds. night until about 10 yesterday morning. He was pretty out of it most of yesterday, but today...he's awake and smiling, talking and playing with one of his toys. His color is still off, more of his pre-PICU stay symptoms are re-appearing (he's had the hiccups 3 times today. This, surprisingly, is one of the symptoms listed for acute kidney failure), yet today, he's back to grinning, talking and playing. We'll take it, don't get me wrong, but boy is it confusing and hard on the psyche. I guess he needed to check in and make sure we know that what we're doing for him is what he needs. That's what I'm going to believe. Just wants us to know he's feeling the love and give us some in return.

I've got another video to share- this one of the Lindstrom side of the family with our Griff. I'm picking the songs now, and for some reason it took me awhile to decide. It came down to Huey or Gloria.....Enjoy!

Thanks for the continuous shipments of love via email, facebook, phone calls etc. It helps more than you can know.

Much love,
Tiffany

HOME February 23-24

2010-02-24T19:19:00.000-08:00

I should be in bed right now. Griffin is sleeping and my interest in the olympics is waning. But, here I sit, eyes heavy, typing away, talking to the abyss but knowing the abyss is full of lots of lovely people who want to know how we are.

So, shortly and sweetly, we're tired. We're sad. Griffin started hurting late yesterday at about 4 in the afternoon after most of the day spent moaning and we had to give him morphine. Every three hours he awoke to yell and complain and tell us to make it better. Drew was up with him until about 2. I was sent to bed at about 12 after Griffin had thrown up on me and Drew knew I was too exhausted to do anything else. He got another dose of morphine in him, slowed his feeding down to half speed and finally got him settled at about 1:45.

I got up this morning to get the kids off to school, Drew went to work and I went back to bed. Until 11- but only got up because I was in a panic that I hadn't heard anything from Griff since last night. He was still asleep. He stayed asleep until 3:45 this afternoon. He napped on and off (more like passed out) between then and about 7. Now he's asleep again. I'm going to attempt to put him in bed and hopefully he will stay that way. He doesn't look the same, his color is changing and his demeanor when he is awake is that of confusion. We really are losing him, slowly, but hopefully for him, not painfully.

It's been a very hard couple of days. My heart is really breaking but I'm so very thankful that he is giving us this time to be with him. It hurts so much I feel it in my bones and at times it hurts to even breathe. But I keep reminding myself that he has been through so much and so much worse. He's not being poked or prodded. I have to remember that. He's home and he's loved.

Tiffany

Home/Basketball/Chapel February 20-22

2010-02-22T11:40:00.000-08:00

And then there were five....

We have just dropped Drew's sister off at the airport after a whirlwind of a weekend. After the big kids cheering and playing in basketball games on Saturday morning, we headed to St. Andrew's church in Clemson who had kindly organized a baptism and anointing of the sick in their beautiful old stone chapel for Griffin. The sun was shining and many wonderful people came to share in the blessings for Griffin. It was a bittersweet moment for all of us. A few pictures were captured of the afternoon (thanks Angie) before the batteries in her and my camera went caput. I have taken the images, along with a few others of Griffin to make today's video.

Later, at home, Kirin and Cooper were asking Drew and I why Griff had to be baptized and what it all meant. As we explained the significance of the oils, the response was as follows:
Cooper, "Well, anyway, Griffin stinks." to which Kirin responded, " Yeah, whatever it may mean, it makes Griffin stinky." Ahhh, reality not symbolism. (I stunk too and it made me wheeze, in all honesty.)

He continues his slide away from us, giving us signals that he is thankful for the comfort and peace of home. Now that it is just the five of us here, I think he won't feel like he needs to entertain anyone (kind of like his mom...) and start to rest a bit more. We have started to give him tylenol on a regular basis to ease the uncomfortables he seems to have. We haven't really witnessed pain yet, thankfully. He's talking a bit right now, telling me all about Ray's visit :), so I am going to go listen.

With that, I will post the video and bid you all much love and thanks for today,

Tiffany

Home February 18-19th

2010-02-19T18:16:00.000-08:00

We've had a rough couple of days with a couple of firsts...

1. For the first time in 2+ years we forgot to top Griffin's feeding tube bag off. I remembered when I sat straight up in the bed at 4am.
2. The next night I remembered the formula but forgot his anti-seizure meds. For the first time.. ugh. We're not exhausted or anything.
3. Griff is not going to bed until 1230 or 1 every night. This is a new occurrence for us. Drew and I are taking turns staying up each night- hence the exhausted part.
4. Had to choose an urn and write an obituary yesterday and today. Not easy. Not easy at all. Needless to say, more firsts...
5. Griff spent most of yesterday sleeping and/or moaning. It was not a good day overall. He managed about an hour worth of happy for us just as the kids were going to bed though.
6. He was smiley and talky most of today. We tried to enjoy as much of it as we could.

Signing off today with Cooper's video. The song is appropriate because the phrase "are you ready" is uttered on a normal basis as he begins to play with Griff. They love to rough house together. Actually, they love to do everything together- Coop just has to breathe in the same room as Griff and he lights up. This is what makes all of this business particularly hard on my Cooper. Enough said.

Much love to all,
Tiffany

HOME February 15-17th

2010-02-17T14:09:00.000-08:00

Griff continues to give us smiles when he can, but he is slowly and surely slipping into the quiet state he was in a few weeks ago. I have started to do these video segments set to the music of the kid's choosing. Hope it puts a smile on your face. It sure did for us. (BTW- According to Kirin, Freeze Frame is one of her AND Griffin's favorite songs :) )

Much love,
Tiffany

Home/Walmart February 13th and 14th

2010-02-14T19:30:00.000-08:00

Saturday brought a very weary day for our Griffin. He spent a lot of the day moaning or staring off in the distance, just wanting to be held, but not wanting to be held at the same time. He spent about and hour and a half sleeping on his Grampa, only to wake and be uncomfortable again. There weren't a lot of smiles. Dad left in the late afternoon, which was hard not just because he was leaving,but hard knowing it was the last time he would see him. This, this, is impossible to take. I spent most of the rest of the day in a fog, focusing on tasks at hand but constantly thinking of all that is yet to come.

Today, Griff has been content to lay in one spot and wait for the love to come to him. Auntie Carole had a hard time leaving because every time she would go to leave, he would start singing to her. A very low, little voice that sounded so very sweet. She eventually left to make it home before more snow in the mountains. Griff continued to just hang out and we were left to our own devices for the first time in about 10 days. We had a list of stuff that we were out of that required a trip to Walmart. So, I packed Griff up and the big kids and off we went (Drew was working in the basement). As some of you know, Walmart is not exactly Griff's favorite place, nor has it ever been....This trip included a parade led by my Kirin and the walmart woman hocking littlest pet shop toys around the store, the kids picking out a couple of toys just to spend their money and the all important detour to the Dunkin donuts which didn't have donuts left at 4 in the afternoon. Griff enjoyed being out of the house and especially the cold breeze in his face while we loaded the car. He even smiled and cooed a bit.

Now, we sit quietly in the living room, just my Griff and me. Drew is recovering from a hammer mishap in the basement and the big kids are finally getting some much needed sleep. He can't quite decide if he's tired or uncomfortable. He's starting to show the signs of the symptoms we didn't know were symptoms prior to last Thursday. We think the downward spiral is beginning, but we can't be certain. Right now I will sign off and get to some cuddling. That's what's important now and it's important we recognize it. Hugs, snuggles, cuddles, love whenever you can get it or give it.

Much love on this Gooey Hearts day to all-
Tiffany

HOME February 11th and 12th.

2010-02-12T21:09:00.000-08:00

My post is delayed because of snow- hahahahahahaha. About 4 inches in Clemson tonight. Everything comes to a grinding halt around you here......

Anyway, the last two days have demonstrated a bit of what is coming. Griffin's smiles, coos/talking and general pleasantness have begun to be interrupted by longer and longer periods of the uncomfortables and restlessness. He still smiles on occasion but through the afternoon today his talking has turned to a kind of moaning and he is slowly becoming 'not himself'.

Auntie Carole snuggled him most of the afternoon while my dad and I took the big kids out for a movie- much needed distraction- and drove slowly home in the snow. Drew was forced to fix a leaky toilet (poor man. I feel so bad when he has to take care of things like that). Griffin snuggled with Grampa most of the evening but kept having bouts of discomfort. We thought he might be sleepy- nope just uncomfortable. I snuggled him while watching the opening ceremonies of the olympics, got him to sleep but you can tell it's not a restful sleep. He stiffens up and scrunches up his face. He's awake again now, in his crib, with the only light in the room coming from this computer screen. I hope the quiet will dull the ache, along with the tylenol I just gave him. I have a feeling by Monday we're going to need the morphine.

The neuroligist's office called today to make an appointment for Monday. It seems they didn't get the memo on what is going on. I went ahead and scheduled to give Drew and I the weekend to figure out what to do. It seems futile to me at this point to see any more doctors, let alone change his seizure medication. We'll see I suppose.

Griffin has been the lead in this dance for the last 2+ years, and he is getting better at it. He lets us know when to speed up and slow down. I'm just hoping we can continue to keep up and make it easy for him to take the steps.

Much love,
Tiffany

HOME February 10th

2010-02-10T18:52:00.001-08:00

Hi. Not much new today. Griff stayed up partying until 12:15 last night- laughing, smiling, giggling. Today we spent hanging out, listening to Griff sing and talk and enjoy everything around him. He's chewing his fingers a lot today and rubbing his head. I'm a little afraid he's going to pull a lock of hair out again, but I don't think I'm going to bother getting him a haircut just yet. He's just too cute with those curls and cockatoo.

Cooper got really mad today, finally voicing what has been brewing in his head. Kirin joined in the vent session and is sad and upset too. I'm glad that they are finally verbalizing what is going on in their heads and hearts about all of this business. Doesn't make it any easier, but at least it's a reaction and from what I've read, the normal reaction. The therapist from hospice called this morning and will be here next Wednesday. It's definitely going to help.

Michelle came by this afternoon and in the most efficient photo session ever, got those family pictures I have been after since early November. Thank you so much Michelle, it is a priceless gift you have given us.

FYI- I will be updating every other day for now, as there isn't too much change at this time. Like I said yesterday, this may be a long process, Griffin in his own time, and it's time to take a deep breath for the long haul.

Thanks again for all the love, notes and support from across the miles- I feel like I have hundreds of tiny helium balloons lifting me up when I need it most.

Much love to you all-
Tiffany

HOME February 9th....

2010-02-09T18:36:00.000-08:00

I am feeling a bit exhausted today, go figure. I think the events of the past five or six days have settled into my bones, but here's today's update....

--Griff slept all night, soundly. He fell asleep on me and as I went to lay him down he stayed in what we call the tree frog position. Not a flutter of either eyelid. Boy, was he glad to be home.

--Woke up with a beautiful smile on his face for each of us. Sent the kids to school with a warm fuzzy.

--Got super fussy after they left for about an hour or so, gave him tylenol and 15 minutes later his button came out again. UGH. Drew and I sprang into action and put in the new button we had here at the house. He fussed for a while and then passed out. Very traumatic.

--Hospice people came for official intake. We ended up sharing more information than they did, but they met Griff and instantly fell in love. Sweet boy. Then he pooped on one of them. HA! Welcome to our club!

--Hospice will be coming twice a week officially, the child therapist will come at the end off the week to meet with Kirin and Cooper (which will really help I think)- they do art therapy and other kid friendly stuff to help them deal with everything.

--Met with the kids teachers to let them know what was going on. As always, the staff is amazing and so supportive there. We wouldn't have been able to get this far without them.

--Griffin's demeanor has been super pleasant and happy since his nap this morning. He's cooing, singing and smiling like nobody's business. Enjoying his joy every moment we can.

It almost seems like the past few days at the hospital were made up in my head right now, given the way Griff is behaving. He's like he was before Christmas right now, which makes my head spin. I know his insides are just playing a trick on us all right now, but his happiness and smiles fill us up and get us through another day. This process may take awhile and I'm just going to have to deal with that. Griffin in his own time, his own way.

much love,
Tiffany

PICU/Home February 8th

2010-02-08T17:53:00.000-08:00

As I write this I am sitting in my living room and Griffin has assumed his normal position, on his playspot on the floor. He's talking to his stuffed dog and twirling his hair. I think it is safe to say he is glad to be home.

--Had a decent night- morphine helped Griff sleep solidly for the first time in a few days. I think the fact they had stopped his IV helped immensely.

--The PICU stopped his IV last night, as well as all the blood draws. This, again, combined with the morphine made him much happier and much more comfortable.

--Kidney doctor showed up this morning, stating he understood that we have decided to leave and let nature take its course, however, I got the distinct feeling he would have liked to keep on going with what we had been doing. He also told me that we could keep our appointment for late February if we wanted. All I could think was, ummmmmm, I don't think so.

--Childlife group at hospital came and made hand and footprint sets as keepsakes for us and our family. Bright orange ink- very Clemson :)

--Finally met with the hospice people at 1:15, signed paperwork,which included a DNR. Not easy. Kind of held my breath while we did. I know it's the right thing, but seeing it in writing...

--Griff was finally sprung at about 245 and we headed home!

--Big kids beside themselves with excitement when they realized he was home. Cooper almost jumped out of the car before I had it in park.

--Griff is needing tylenol, he seems a little uncomfortable without it, so we'll fix it as best we can for now.

--Hospice on-call nurse just stopped by to be sure we didn't need anything. Tomorrow is hospice in-take assessments and social workers. Another world we never thought we'd know about, but are learning about quickly.

--My dad arrived safely from Chandler and Drew's aunt arrived safely from Knoxville. Grateful for their mere presence. Beyond grateful. Didn't realize how much I would.

Thanks for all the calls and support. If we don't answer the phone right now, please don't take offense--we're either with the kids, the nurses or completely talked out. We will call you back, we're not ignoring you :)

Much love,
Tiffany

PICU Feb 7th.....

2010-02-07T15:10:00.000-08:00

Here's the latest but by no means the easiest.

--Rough night to get to sleep. Very uncomfortable.

--Way too much poop- Very uncomfortable.

--Crying real tears for about 2 hours this morning. Needed mommy to hold him but didn't work the next 2 hours.

--Button came out and Drew and I replaced it while the Dr and nurse watched and Griffin screamed. Thus causing the Dr. to understand that Griff was in pain, not just uncomfortable and that we are more than capable of taking care of Griff and knowing what he needs.

--Dr. stated "Let's talk. It appears that all we are doing is hurting him and not doing any good. He's putting out more than we are putting in. We aren't making him better, his numbers aren't getting better and he's in pain." He got it. I am so very thankful. He has made it easy on us to express what we feel Griffin needs. It's time to let us go home.

--They have called hospice and we will take him home. We will spend tonite in the hospital, meet with hospice in the morning and go home. We can be a family, under one roof.

--Don't really know what hospice means, other than they will help us through this difficult time.

--They have removed his catheter, turned off his IV and turned up his feeds to where they were when we were at home. He has been given morphine for pain, which sent him to la-la land- which was wonderful after the suffering this morning.

--He is sleeping soundly for the first time in 3 days right now. I am sitting next to him, thankful he has some peace for now, anticipating the coming days.

My mom reminded me of something I used to say often, when he was first in the NICU- " Griffin in his own time. Griffin in his own way.." We don't know how long this will take, but we know he will be comfortable and safe with us at home. This is the absolute hardest thing we have ever had to do, but graciously, we will be allowed to do it together.

Much love to all,
Tiffany

PICU Feb 6th.....

2010-02-06T18:19:00.000-08:00

Just a quick update, as promised, with less editorial....but the details may be gruesome so don't say I didn't warn you ;)

--Started getting blood in the urine, don't know what that means, but they are testing....

--Had a pretty restless night- he seems very uncomfortable, tylenol seems to work a little bit, but no guarantees

--Started having diarrhea, which is waking him up from sleep, having to be cleaned up and killing his behind.

--His sodium level dropped all the way to 85 overnight, which may explain the restless night, but has been corrected back to 155. They are about to stick him again for the latest number. (Normal is 135-155, but the saline solution is at 155. So basically, what they are putting in is the number he measures.)

--Has been uncomfortable off and on all day but he is talking up a storm, letting me know that he has issue with all of this business

--We got moved down the hall into the 'suite' of the PICU- kind of penthouse view of the roof. Very exciting. No particular reason other than they want to be able to see him better when we're out of the room. Griff enjoyed the ride.

-- He is smiling alot too. He's amazing that way. He knows I'm here and let's me know how much he loves me with every grin. Blessings where we can get them.

So, I'm going to sign off for today and get to the cuddling part of the day. I think we both could use it.

And so it goes...

2010-02-05T12:53:00.000-08:00

Well, this is February and time for a post and I planned on a collage of the beautiful images our friend Michelle took just last week of our baby boy but instead I find myself sitting in a hospital room, of another ICU, having to use this blog as a way to update people about Griffin's condition. Scary but full circle moment: Not fun, not good, and very sad. Nevertheless, this is why I started this thing, to keep everyone who loves us informed of the latest news, so here goes.

Got a call yesterday just after lunch from a panicked kidney doctor, informing me that Griffin's sodium levels had reached an incredibly high number (165; normal 125 or less) and that we needed to admit him to the hospital immediately. He called me back ten minutes later to inform me that all of his other numbers were sky high as well and to take him directly to the Pediatric Intensive Care Unit of Greenville Memorial, they would be expecting us. Somehow I drove home from work and found Drew with Griff, snuggling on the floor. He requested that I have fun with Griff in the bath and then pack our bags. Drew went and got the big kids from school, fabulous friends came over to take care of them and we packed up the car, the Griff and ourselves and headed to Greenville. In all honesty, all that kept going through my head was "this is the death march'. At one point I stopped Drew in a hallway of the hospital and said I don't know if I can do this. But, I took a deep breath and stopped the tears for a few minutes and on we went.

So after the requisite check in, pokes, prods and general unpleasantness that is a hospital, Griffin was settled into a robotic crib and Drew and I were left standing helpless. To keep it simple, the doctors had theories, but the priority is to get him hydrated immediately and bring his sodium level down. There are a lot of machinations involved with what that means to his kidneys, possibly a rare hormone deficiency, and of course his inability to really eat. Now, we wait for the sodium check every six hours and the listen to the wishes of the various specialists as to how they would like us to proceed. He is a puzzle and a perfect experiment.

Which brings me to the crux of our heartache. We made it perfectly clear that we wish for no extreme measures. To the PICU this means no CPR, no coding (drugs or paddles), no breathing tubes. WE extend this to no surgeries, no dialysis, no IV at home. But I find myself really wondering, what really is an extreme measure with Griffin? Isn't putting him in the hospital to only be pumped full of fluids via IV and bled dry every 6 hours by the vampires extreme measures? Are we contributing to the prolonging of the inevitable by allowing them to do all of these things to him? Are we really just frightened of the moment when we discover he is gone and we're being selfish by trying to postpone it?

Drew and I discuss this repeatedly. What is the right thing to do? The only thing we know how to really do is love him. We try very hard to keep him comfortable so he isn't suffering. Hydrating him is definitely making him more comfortable, but if his kidneys just keep dumping the stuff right back out, we are definitely delaying the inevitable. We don't want him to be in pain, we don't want him to go scared, but we don't want him to linger in this weird semi state of being. It's an impossible situation.

So, now we wait. They tell us they think we'll be here a week, maybe two. They are going to try and figure out a way to get enough fluid in him via his belly. This will take several different iterations of data collection to reach a conclusion that Drew and I already know. His kidneys are done. When they finally get around to the answer to it sounds like we'll have to be the ones to say no TPN (IV) and then we'll have to decide do we take him home or deal with it here. Hard, debilitating stuff. This is our reality for the time being. I'll keep you updated with shorter more specific posts in the coming days.

We've gotten him this far and he's gotten us this far. We love him and that's all that really matters. We always will. Now we wait to see what we have to do next. One foot in front of the other. Deep breath. Cry. Weep. Crumble. Stand back up and do it again. Keep moving forward. It's hard, but it's what we have to do. We love. We will carry on. We will always remember.

It's been a decade? Really?

2010-01-11T08:19:00.000-08:00

It suddenly hit me the other morning as I was changing little Griffin's sheets....OH MY! It has been 10 years since I did this for Kirin! An entire decade! Holy cow, Batman! From such a teeny, tiny little thing to this beautiful, blue-eyed, moody, tall girl with long flowing locks of blonde hair. Our girl is 10!

Then it really hit me and I almost (really, almost) started crying when I realized she will be in our house less time than we've already had her...Only 3 years to teenagedom, 6 years till driver's license and 8 years till college! Oh how different the next 10 years will be versus the last 10....I'm a little freaked out to be honest. Ten years is a long time. But the next 10 seem like they could fade so fast...

December 2009 went by like a flash, but our baby girl turned 10. A feat definitely worth noting and a moment in time I don't believe I'll ever forget.

THIS is what we're dealing with.....

2010-01-02T06:47:00.001-08:00

So, early in December Griffin had an EEG. This is a two hour exam where his head/brain is hooked up to 18 electrodes in this adorable little helmet and they follow his brain waves, heart rate, pulse, breathing, etc. (Picture in last blog). The purpose of this EEG was to try and identify the new type of seizure he had been experiencing- a jerking motion- . Dr. Morales was out of the country for two weeks and the first thing he did on the Monday he returned was CALL US. He explained, "Your son's EEG is extremely abnormal, has a lot of high amplitude, meaning high voltage, activity and there seems to be no correlation between the 'jerks' and any information on the EEG. We need to get you in here as soon as possible to discuss options.".....

They got us in a mere three days later, where he then explained to us, for over 40 minutes, the options in medications for children with, as we're now to call them, spasms. He had really thought about Griffin, all of Griffin, before we arrived and told us--" Kids with spasms are usually given ACTH drugs which promote the body's production of steroid. This normally calms the EEG and relieves the symptoms. There are many side effects,(he explained them all), however, given Griffin's other issues, makes this drug really impossible. There is another drug, which has had great success in countries all over the world, but it's main side effect is blindness. Over a long periods of time, the brain is seen to get spots and the vision decreases. In someone like Griffin, it will be hard for us to assess this without MRI's. This medicine was only recently approved by the FDA, but I should have some from Canada in the closet we can use until we get him approved for it....This will require a visit to the pediatric opthamologist and an MRI periodically to check for spots. Going up on his Topamax (current medication) is not really an option since it can cause kidney stones and you are already seeing a decrease in kidney function as it is. Go home, discuss it and call me tomorrow."

Drew and I looked at each other and said there was no need to discuss. We'll just have to go with the second option- we don't believe he can see much, if at all, so this seems to be the lesser of all the evils. Dr. Morales then asked one of us to go with him for a second, which I did, thinking we were going to sign paperwork for this trial medication....Instead, this is what he showed me:This is a normal EEG, of a normal kid or even a kid with epileptic activity while in a stable state. The Y-axis scale is 10 microvolts per millimeter.

This is Griffin's EEG on the same scale. In order for his to look like the one above (only to discern the 18 individual measurements) the scale has to be cranked up to 70 microvolts per mm. That's right, 7 times as much. This is Griffin on drugs. This is Griffin in a relaxed atmosphere, just laying on the hospital bed. Of course you can't correlate a jerk to anything when the WHOLE two hour test looks like this. This is what Dr. Morales meant by abnormal and high amplitude.

I asked him to print this out for me so I could show Drew, as well as everyone else. I had a feeling that when people see this, they will truly get it. This amazing child, who can still recognize us by voice, can smile at the sound of his brother and sister, can giggle when we tickle him in just the right spot, who knows when he is at home versus any other place, has this going on in his brain ALL THE TIME. ALL THE TIME on drugs. I sure as hell wouldn't be able to sit up, let alone walk if this was going on in my brain all the time. Same for you. Same for all. He is missing half of his brain. The part that insulates all of this electrical activity is NOT THERE and we are thinking that he is actually grounding out when he jerks.

My Griffin, he is amazing, remarkable, tough. We worry that this is causing him discomfort and this is why we still agree to change his medication in the hopes it will 'calm' his EEG and bring him some relief. We recognize that this battle he is waging will come to an end but unfortunately, it is a battle that he has to wage alone and for some undetermined amount of time. As parents we want to make it all better, but in this case, all we can do is try and make it more bearable. It seems that by giving him the meds we do makes it bearable enough for him to still smile, but we can only imagine what he really feels. My heart hurts all the time, wondering if we are doing enough. We have really quantified what we are dealing with.

So, now, we pick up this ammunition and take it into our battles with doctors, county disabilities boards and anyone else who doesn't really understand all of Griffin. Knowledge truly is power and, boy, a picture is really worth more than a thousand words.

The latest news from Clemson...

2009-12-02T06:09:00.000-08:00

Hi all. October and November have been action packed and I'm not feeling particularly witty this morning but I owe everyone an update, sooooo...I will keep it short and sweet in the word department and but big in the picture department (since a photo is worth a 1000 words. haha.)

Let's start with the Griffin update.... HEALTH: In early October he had more blood tests and his kidneys had stabilized but not rebounded. Had it checked again in November and their function is still down, his sodium and chloride levels are high (he may be dehydrated) and Dr. Boineau has put him on a every six week blood check to monitor. In October we noticed he started to 'startle' a lot more than usual. It's kind of like those old cartoons when the cat sticks his finger in the electrical socket, walks away, and jerks every so often with the "ZZZZZT" descriptor next to him every time he does it. They don't seem to bother him, in fact, he laughs occasionally after but it can be any part of his body that does it (even his torso without the rest of his body). We had a check with Dr. Morales, our favorite neurologist in early November and told him about it. And, as usual, Griffin did it a few times in the office for him to see....need a new EEG to determine if it's a new kind of seizure or some sort of tick he has developed. We, collectively, were not surprised to hear that he had yet another kind of brain issue. It's to be expected with the extent of Griffin's brain trauma. The EEG was yesterday, but results will be delayed due to Dr. Morales being out of the country with ailing parents. Griff looks super cute with his EEG get up (although he probably thinks it's ridiculous that Mommy would take pictures of this....)He had a sniffle episode start the Friday before Thanksgiving, but remarkably, I think Drew and I finally figured out how to handle it without it turning into a 2 week puke fest! He still has the sniffles, but he's not dehydrated, he's sleeping through the night (THE WHOLE TIME!) and no medication outside his usual was used. Pat on the back.....Pat on the back.....GENERAL STUFF: In October he had a NORMAL 2 YEAR OLD ACTIVITY!!! I was shocked, amazed....HE GOT A HAIRCUT!!!! He did so good holding up his head, and it was definitely needed since he managed to pull an entire clump of those beautiful curls out of his head the day before. Here's some action shots of the big event (it apparently took a lot out of him as evidenced by the final shot):

For the big munchkin update: October was filled with dreams of candy and Halloween. Cooper was Harry Potter this year, and Kirin was a Mad Scientist. Not mad, as in crazy, but mad as in mad her experiment blew up in her face! She cleverly came up with the whole idea LAST YEAR at the dinner table about a week before halloween. Cooper decided he needed to read the Harry Potter books after he decided that is what he wanted to be, so he could truly be in character. Specifically, he is Harry from book 3.
They are both doing great academically, and reading is the activity of choice most of the time. First report cards were all A's and B's, and they scored through the roof on their standardized tests. Cooper is having problems with a little girl at school for the last two months, that has caused him to get into more trouble than I care to discuss, but lets just say she's trouble and now we are having a meeting with her parents, the principal and several teachers to resolve it. It's making him not want to go to afterschool care, and he is just miserable. Hopefully, we'll get it taken care of and he can go back to being his normal, happy-go-lucky self.......Kirin has really gained some backbone this school year herself- she has a couple of friends who insist she not play with some other girls because they are 'weird, dorky' whatever, to which she replied "I can play with whoever I want. They are my friends and you can't tell me what to do". I am so proud. I told her to tell them to go suck an egg. Maybe it's a good thing she didn't....

Thanksgiving was awesome for all of us- the Aunties Ray and Diana came to visit us for the entire week and we actually had Thanksgiving at our house! I was very excited about this myself. We visited the Biltmore house in Asheville and saw all the beautiful Christmas trees and the kids had a blast with the aunties playing Pictureka and going on long walks! Never a dull moment and we hope to make this an annual event!

Well, that should do it for now. I have spent much more time moving these pictures around than I intended so I need to go. Catch you all in 2010!!!!!!

Things NOT to say...

2009-11-10T06:11:00.000-08:00

In the two plus years I have been blessed with my little Griffin, I have had many conversations with a wide range of individuals (those who know me well or don't know me at all) about his condition, my condition and the overall well being of my family. In the course of those discussions, there are recurring phrases that have now reached critical mass in the repetitively annoying category. And although I recognize most people don't know what it's like to wake up every morning and think "Is today the day we lose the battle?", (I do not wish this on anyone), at the same time, every now and then, I would love for people to really think before they speak . Seeing as I have had my fill, I'm going to give my two cents as to why I find them utterly obnoxious, ridiculous and otherwise unacceptable in the comment department.

Here they are in no particular order.....

1. " God never gives you more than you can handle".
Since Griffin has been in existence I have probably heard this one about 8000 times. Baloney. This is a good phrase for teenagers suffering heartache and despair over the boy/girl that just won't love them or people who have never experienced a tragedy of a magnitude greater than an anthill. People tend to say this because it is obvious they do not know what else to say and it is the only way they can reconcile things in their own mind, not for my benefit. Really, it is better to say something to the effect of "You and your family are handling this so well" or "Keep doing what you are doing, because it seems to be working". Much more helpful. Much more insightful. Much more selfless.

2. "You were chosen for this."
This one might take the cake, and it's annoying on a different level. This one I get from the truly holier than thou types, who don't know me at all, and, in my opinion, also implies "I'm sure glad it's you and not me". When paired with the previous statement, I really get fired up. I was not chosen for this. Griffin was not chosen for this. This whole thing makes absolutely no logical sense. It's not a competition for who can be a martyr first. Good grief. Anyone placed in the same situation would do the same things. Love and take care of your children. This is what we do. This is what we SIGNED up for when we became parents, when we got married. For better or worse is the vow, is it not? Give me a break- chosen. PAAALEASE. This is also uttered by people who do not know what else to say when confronted with something they cannot fathom, but let it rest. Didn't anyone ever teach you to say "I don't know" when you really don't know? This crap is mindblowing and when you see Griffin in person, it's even worse. Say that. Say " I don't know what I would do in this situation, but I have great admiration for the way you are handling it" or "I just don't know how you do it, but it's amazing that you do!" Biblical references are not necessary, be a human.

3. "How old is he?"
This one is unique to us and when coupled with a look of horror upon my response, I do get a certain sense of HA -HA out of it. There is also the more than occasional follow up comment, "He is SO SMALL!" No shit Sherlock, we didn't notice. This one is always said by complete strangers and has prompted me to wonder, why do people ask this question of any child? What does the baby's age matter if they are cute as a button, cruising along in their stroller at the mall? My child is beautiful, tiny and still in an infant car seat. You can presume he is less than a year old please and let it be. BUT NOOOOOOO, you have to open your mouth and I have to answer truthfully. I can't help myself- the kid has been with us a while. He's over 2 and yes he's small. Stick with "Oh he is so beautiful, cute, adorable, etc.etc."

Now that I'm done, I want everyone to know that I do truly appreciate efforts of others to discuss Griffin's condition, well being and general prognosis. I find great comfort in knowing others are truly concerned and genuinely want to know how we're doing. It's just these stupid phrases that have no true relevance to the situation. I do want to share one of the most amazing notes we received from a very dear friend that I read every time I start to feel like the only person in the world with this load to carry and no one understands. It was received while Griff was still in the hospital and I just started this blog. I think it eloquently summarizes the intentions of those who know us best and hold us all close to their hearts.

Tiffany & Drew,

Let me start with an apology for being the world's worst about actually keeping in touch with people, even while monitoring them from afar through technology. For this, no excuses, just an apology.

Just read your blog and it definitely put the pieces together for me on the whole story with Griffin and the emotional / physical roller coaster you guys are on. Thanks for publishing your soul...believe it or not, it helps those of us looking into your world from outside know how to pray better for your entire family. You guys have been in our thoughts and prayers over these past few months, even if I have not communicated that (reference paragraph #1).

Please know that, while we can't presume to understand what it's actually like to experience this challenge that has come your way, as parents our hearts hurt with you. It's a rare thing that I read that causes me to choke back emotion, but the complete story in your blog hit the core... and that's appropriate. I struggle with what to offer as help, but the heart is there and willing. Not to be trite, but please let me know if there is anything we can do.

In our prayers, God's mercies on your little Fighter:), rest to your minds & peace to your home,

Chad & the Connelly's

Well said, Chad. Well said.

XOXOXOXO

2009-10-26T06:06:00.000-07:00

Hugs. X in the XO. My grampa sconsin had a way of swallowing you up and making you feel like there was no other world other than his flannel shirt against your face. My dad envelopes you and cups your shoulders, rocking and patting, so comforting. My husband just knows when to do it. My Kirin squeezes so tight she hurts, but it's like she needs to inject you with love. My Cooper, he squeezes the neck until you tip over, and then squeezes again to make sure you know what he meant. Last night, I wanted Griffin to hug me. And he can't. He doesn't know how. He can't. My sweet little guy just smiled at me, arms stiff as boards and giggled. I wanted to know what type of hug Griffin gives, just once. I know I'm supposed to be thankful for the smile and the giggle. That's his hug for me, but last night, that wasn't enough. It wasn't fair, it wasn't right and it is sure as hell doesn't do him justice. I am so unexplicably sick and tired of all of this shit. This is so unremarkably unfair. Not just to me, to all of us. Today is a really bad day. Not for Griffin, he's still laying in the other room talking and chatting, cooing and blowing rasperries. Oblivious to the world around him and oblivious to the horrors that affect him. I want so badly for him to sit up and yell Mommy I want this or that. Just to say Mommmy I'm hungry. Mommy I don't feel good. Mommy I want to be Handy Manny for halloween. To let me know what he thinks, what is going on in his head, to be a 2 year old. A Demanding and tantrum throwing, snot running out of his nose, biting the other kids at daycare, throwing food on the floor, pulling his sisters hair and breaking his brother's toys 2 year old. I keep seeing other friend's 2 year olds and wondering what Griffin would really be like. I know I shouldn't, but today is a bad day. Yesterday also marked the 2 year anniversary of him coming home from the hospital. I naively thought by this point things would be so different. He shouldn't have a feeding tube anymore, he should be sitting up and trying to walk. I didn't expect him to be hitting normal milestones at this point, but come on, this is getting absolutely ridiculous. I just want a hug from my Griffin. I want to see him toddling down the hallway looking for his favorite toy. I DON"T KNOW WHAT HIS FAVORITE TOY EVEN IS!!!!!!!!!!!!!!! This is so completely unfair. I want to scream. Today is not a good day. I have spent the last two weeks with a horrible headache and I started to wonder if Griffin has one all the time. How does he live with it and I don't know how to make it better. Today is really not a good day. I want a hug from my Griffin. I want a hug from my Griffin. I'm convinced his guardian angels are back, just like that movie "Heart and Souls", because he has started staring at spots on the ceiling or mid air and giggles and smiles. While I'm glad they are there for him, I wonder why have they suddenly come back. What is in store for him. Is it soon? Or are they just here for his entertainment? I feel like my life is not my own. I'm still stuck in some nightmare with no end in sight. Every morning I wake up preparing for the worst scenario. This is the reality of our life and most days, I deal with it and go about my business, but not today, this is not a good day. A hug. A simple hug. Today I am not the strong woman everyone tells me I am and now I'm feeling like I'm letting everyone down by having a bad day. Nonetheless, today, is not a good day. I want a hug from my son. I WANT A HUG FROM MY SON!!!!!! But, there are bottles to be cleaned, laundry to be done, diapers to be changed, so despite my tantrum and bad day, life goes on. I'll get it together before the kids get home from school and deal with all the other things I have to do today. But this is what is in my head today. I just want a hug from Griffin. Tomorrow is another day, but today, I want a hug from Griffin, can't have one and it's the most disappointing feeling ever. Today is a bad day and I'm allowed.

If you are out there reading this, please go hug someone you love. Hug them very, very tight and don't take it for granted. It's one of the mose precious gifts you can receive.

So, September was Super Fun.

2009-10-13T10:47:00.000-07:00

September was super fun and this post is late because it's taken me this long to catch up .....Kids started back to school, as I already mentioned, but the other big deal was Drew turned 40 and I managed to pull off the surprise of his life! On September 12th the ultimate County Fair Themed 40th Surprise Birthday party brought a grand total of 43 adults and 21 children to our house for a meat-on a stick, bounce house jumping, pinata smashing, pie and cotton candy eating good time! He was genuinely surprised and extremely touched by the party and the amazing turnout. It was wonderful to have a night completely dedicated to pure, unadulterated fun around here- no worries, no stress, just love and happy! The kids had a fantastic time (the tiger bounce house definitely helped) and Griffin said hello to several people he had yet to meet in his life and then went to sleep. Very cute.

I don't want to over lap September and October stories, so I'm going to stop here and save the rest of what I remember for the next entry. Plus, I have too much to do than fight with this software for posting more pictures today.

Stay tuned...October = Griffin's first haircut and HALLOWEEN!

Love, Tiff

Another summer come and gone...

2009-09-01T06:39:00.000-07:00

Okay, well, I've done it again. Skipped another couple of months and here we are. September 2009. Amazing really. We've been busy in July and August (HAPPY 7th BIRTHDAY COOPER!) so I'll try and sum up.....

Let's see, where to start....compared to June, July was relatively quiet. I had the chance to go to Indiana/Illinois and get a 4-for-1 out of a getaway! I got to visit my grandma for her 80th birthday, see my brother and his family as well as my uncle and (most of)his family, go to the Harry Potter exhibit at the Museum of Science and Technology AND go to a very dear friend's wedding in downtown Chicago. From there I flew to meet my very brave husband in Charleston/Kiawah Island where he had driven with the 3 kids by himself the day before for a much needed week long beach retreat. We spent a lot of time at the ocean with all of the kids and managed to not get too red!

On the Griffin front, he started having another type of seizure in the beginning of July, which, coincidentally, began about a week before a previously scheduled neurologist appointment. He once again managed to have a seizure while we were with the doctor and as a result we had to increase one of his medications. This, in turn, caused more issues with his eating habits and our hopes of a quick transition to his new formula went out the window. He also started waking up about 2-3 times a night in July, which needless to say, turned daddy and I into walking zombies. This also caused us to turn the living room into Griffin's bedroom as well. Poor Cooper wasn't getting any sleep and it seemed to be the least disruptive option. Luckily his bedding blends right into the living room decor, so it seems like it's been that way always :).

In August, the big kids finished up day camp the first week and started Camp Mommy-Daddy for three weeks (school started late this year.... I started singing a line from a Christmas tune by day ten...'And mom and dad can hardly wait for school to start again'...). For my part, I attempted to plan activities outside the house and had about an 18% success rate with doing things when I planned to do them. Regardless, we got to the movies once, got the boys their birthday pictures and Kirin got her hair cut. These are accomplishments given that I had planned about 46 other things. Oh well.

The end of August brought us to Cooper's birthday!!!! He 'changed' 7 (this is what he used to say when he was little) and instead of a birthday party, I decided it was time for a trip to Dollywood. And let me tell you, WHAT A TRIP! Let's just say, once you've done Disney, there truly is no turning back. But we did have a great time, Aunt Carole was kind enough to stay at her house in Knoxville with the Griff-meister- so Cooper and Kirin got solid mom and dad time. We haven't done that for about a year so it was truly a gift to all of us, not just Coop. As far as gifts, Cooper got his first bike shop purchased bike, complete with brand matching helmet and water bottle and he is so PROUD! I love 7- so big and cool but still my little kid (hence the picture at the top of the page!)

August also brought me my first stitches due to a freak dishwasher loading accident, shopping for back to school stuff (my favorite kind of shopping and I believe I have turned my kids into shopping monsters as well....) and a nephrology(kidney) appointment for Griffin. It appears that his kidney function is decreasing again, which may or may not be attributed to low blood pressure. The dr. had us take him off of his blood pressure meds in an attempt to correct the situation. Oh, and that waking up 2-3 times a night I mentioned earlier? The night we took him off his meds he slept through the night for the first time in 6 weeks. Drew and I were a bit frustrated to say the least when he slept all night the next day too.

One of the hardest parts of Griffin is trying to decipher what is wrong with him...We knew he was cutting another molar, so for a while we thought that might be the problem, but then it kept going and you get so zombie-fied that you can't manage to apply critical thinking to the problem. Then you get to the point where you don't know which doctor to call, so you think you should call every doctor or none of them because it's probably just his teeth and we just have to deal with it. I have a system- if it's before 4am I get up with him, after 4 Drew gets him. You have to have something I guess. But then we have an appointment and change his meds and low and behold, the kid sleeps. Aye, yaye, yaye! It could make you crazy and mega guilty too, because we know Griffin has to be so frustrated with us for not figuring it out and making it better. HARD STUFF! But, he's sleeping now, so we are so very thankful that we may have found a temporary solution to this issue. Unfortunately, we were also handed the knowledge that he is not getting any better. In the back of our minds we knew this to be true, but now it really is front and center. We have decided that no matter what happens we will not put him through any more surgeries or what we deem unneccesary procedures. We know him best and we know his body just can't take anything else, especially a kidney transplant or dialysis among other things. We have fantastic doctors who understand this decision, and we have come to grips with what this decision means for Griffin. Our goal is to keep him happy, safe and most of all loved, for as long as humanly possible. Now for finding a way to explain it all to the big kids...that is something Drew and I will have to tackle sooner rather than later, but for now, we wait...

And finally, it was time for school to start again!!! Kirin has turned into an amazing 4th grader and Cooper is a triumphant 2nd grader! I can't believe how big they have gotten, both physically and personality wise. We have even reached the point where we will leave them home alone for 30 minutes at a time together. YIKES! I suppose with the invention of cell phones this really shouldn't be that big of a deal, but YIKES! I still walk them to school though- Drew thinks they could do it on their own, but I have decided that until they tell me to bugger off I'll take my 15 minutes with them every morning as long as I can get it.

So that about covers the latest around here. Hope all is well with everyone out there and please drop me a line sometime- I'd love to hear from you!

Griffin is 2(!) and other news of June....

2009-07-06T07:29:00.000-07:00

Griffin has triumphantly turned 2! Despite some minor calamities in the past year (especially in February and June), the boy has made to the ripe old age of 2! We celebrated with a trip to Mutt's BBQ for dinner because they have a train the goes around the ceiling that he seems to like (as good a reason as any to pick a restaurant for Griff's bday) and a birthday cake (which he is licking the icing from above). He did take a turn trying to open a gift, but mostly the big kids opened them for him:

It's remarkable to me that time has passed so quickly, I say that often I know, but it still astounds me. We've got nothing new to report in the way of his health/weight...He's holding steady, still no weight gain, lots of trials and tribulations with formulas, WIC and middle of the night fits. But, we'll take it all, since despite it he is a happy kid! We spent the rest of his birthday weekend (and mine, as well as Father's day) at the beach on Kiawah. Very hot, but lots of fun. It marked the first time we had travelled as JUST the 5 of us. It was quite amazing that we forgot nothing and no one got sunburned! Griff enjoyed the breeze on his wet clothes, but not so much the water this time...He even managed a nap under his cabana:

Cooper enjoyed digging for 'wet sand' to build his drip drop castle:

And Kirin just enjoyed anything to do with being in water and sand:

Happy Father's day to Daddy:)!

Not a lot to say this blog, just a lot to share in way of pictures. Life is busy but slowly getting organized and I am trying my best to keep plugging along with my degree, take Griff to all of his appointments and bake/decorate cakes for money when I can....The Spritz Baking Company is becoming more of a business than a hobby and I love it! Drew is trying to keep up with work, consulting and Gramma still in the hospital for her broken hip...takes a toll on the psyche but we're managing!

I'll leave you with a couple of sweet images I've managed to capture with the camera, but mostly in my heart over the past couple of months. My kids are AWESOME and I am so very grateful that I am their Mom!!

Snow in South Carolina. In March????

2009-03-01T17:12:00.000-08:00

Just when you thought it couldn't get any weirder....it snows in South Carolina on March 1st. And it's not just a little bit of snow. Granted it's not Peru, Illinois snow, but it's a lot for Clemson. ESPECIALLY for March. This is ridiculous....Global warming is real people. Good grief!

Let's see, what to tell you about...Griffin has been cutting a new tooth, which in Griffin world lasts about a two weeks, results in a terrible runny nose/cough and plenty of throwing up. But, at least we know the signs now, and we don't have

to take him to the doctor with the worry it's something else! We're not looking forward to the cutting of molars....oooh, going to be rough. Otherwise, he's doing well, and it looks like a positive thing came out of the stint in the hospital- his appetite is returning! It's like he just need a 12 point maintainence check-up, fill the fluids, lube the gears and now we're running like a champ!

Hopefully, this hunger continues and will result in weight gain. Little guy has been about 14.5 pounds since September. He keeps getting longer though- which is making it fun to get pajamas to fit him! You buy them for length and he looks like two other kids could fit in there with him!

Kirin and Cooper are doing well- Cooper (and I) survived the Famous American project (pictured in his amazing Henry Ford costume. Ha!)- and it turned out that ALL six 1st grade classes gave their individual speeches on stage in the cafetorium in front of ALL of the parents. I believe this borders on child abuse. Ridiculous. What six year old needs that amout of stress????? Kirin performed the next day with the rest of the 3rd grade at the International Festival at the school. They learned 5 songs, 4 of which incorporated some foreign language and the 5th was Hawaiian. Didn't know that Hawaii was considered an international location(hence the Hawaiian costumes in the picture. Kirin is in the white gown like thing for Saint Lucia, the Swedish song they sang), but this is South Carolina....Anyway, cheerleading and basketball finished yesterday, with their big banquet next week. They had a lot of fun and I think both learned a lot. Kirin definitely learned how to 'WOOOOO!' in only the way a cheerleader can 'WOOOO!' And Coop learned how to handle jammed thumbs, basketballs to the nose and how to keep playing when it hurts!

Drew and I both travel this month- me on a short trip to Florida next week to refuel and Drew heads to San Diego for a conference and Canada for a party...I'm gonna be alone with the kids for about 10 days this month. Should be interesting, I'll keep you posted.......T

Riddle me this...

2009-02-15T12:38:00.000-08:00

Okay, just a quick rant.

I have no recollection of relying on my parents to ASSIST (operative word here) in doing a research project before the 3rd grade. Not that it didn't happen, mind you, but I really don't think it happened. I don't even think I had homework until late in the 2nd grade. I know I had to do my own research project in the 4th grade on the Apache Indians and I distinctly remember waking up early on a Saturday morning and writing my whole report before my parents got up, and even making a cover for it out of constuction paper. I was 10 years old. Apparently, times have changed drastically. Cooper was assigned a famous american project to complete by Tuesday and I quote, " This entire project is a home-based project. Your student will research his/her famous American, make the poster, design the costume and create a short speech on an index card at home. This will be a social studies grade."

I didn't know that my 6 year old is capable of research, fashion design and speech writing. So, now, in reality, I was assigned said famous american project, and am spending my Sunday afternoon researching Henry Ford and playing cut and paste with the facts on the computer, because Cooper has to have the best information so he can paste them on a poster board and get the superior grade. Oh and I will have to spend at least two hours on Friday watching as 17 other 1st graders stand in front of a classroom full of parents regurgitating the facts THEIR parents researched and wrote down for them.

I curse wikipedia and the internet it rode in on!

What a Month....

2009-02-08T14:37:00.000-08:00

Hi all. I had intended on this becoming a monthly thing this year, writing on the first of the month.... Well, shortly after that last blog, things went amuck around here in a way they can only go amuck for us, culminating this past week with a two day visit to the hospital for the Griff-meister for dehydration (thankfully that's all it was) and a double visit for Cooper to the doctor for RSV. Drew and I caught the upper respitory thing too- so I have to say, the ship definitely felt like it was sinking this week!!! Kirin seemed to be the only survivor for about 4 days- and unbelievably she made it to school on time EVERY day! Now is the recuperation and about 80 loads of laundry. YIKES!

We still managed a few good things in the month of January to keep us busy- Kirin is cheerleading and Cooper is a super-star basketball player! Every Saturday is now spent at the basketball court, but unfortunately, not at the same time....It's giving us a peek into our future as parents with teenagers who sign up for every extra-curricular activity. Hectic and forget about your own Saturday, but tons of fun for them! We've got the month of February left for games, then who knows what they'll be onto next?

We also found out that our awesome Griffin sitter, Lindsay, is expecting a baby in September! We're so excited for her and Ben, but unfortunately for us, she won't be able to watch Griff after May...So, now the hunt is on for a new sitter- Drew said it was too good to last...

Well, that's about all I've got time for tonight. Hopefully by March, I'll have a little less to talk about :)!! OOH- I almost forgot- see my cool new tracking thing over there <-------?? Now I can sorta see who comes to visit me! But since it doesn't tell me who, just where, if you get a chance sign the comments! I'd love a howdy from you!

Happy 2009!

2009-01-01T09:16:00.001-08:00

Happy Holidays and Merry New Year from my crew! Time has flown once again this year, and I feel like it's zoomed around me and one more time I'm writing holiday wishes a year later when I feel like it's just about February. Anyway, I needed to say hello and thanks to all of you for your warm wishes and love as we say goodbye to 2008 and welcome 2009.

As we were going to bed last night, Drew said, "I hope 2009 is great for us." I said, "I'll be happy with good. No surprises. " and that is what I hope for this year. I asked for a boring 2008, didn't get it, so I'm hoping this year is just good with no surprises.

As I look back on 2008, I am realizing we had a year filled with lots of family, love, friends and joy. We got tripped up at times with a few blips on the kid front, but all in all, we're still together, we're still surviving and we are slowly finding our way back to what normal is. Our house is still in remodel mode- but Drew is 95% done with the upstairs and we're starting in on the basement. Hopefully by next Christmas it will be ready for visitors (ha-ha)! I managed to write my proposal and pass my qualifier this year too- don't know when I'll be done with my degree, but I'm moving forward. Kirin turned 9 and Cooper turned 6 and they are continuing to excel and grow, with no major hiccups and Griffin turned 1 and is still our Griffin.

All in all, we keep making forward progress. Not nearly as fast as we used to, but at least we're up and moving! (Please note this is in reference to our well being, not our location. We haven't changed addresses in almost two years. Yes. We're still in the same place.)

We send you much love, lots of smiles and hope you all have an amazing 2009 with plenty of good stuff and happy memories. Drop us a line sometime too! We'd love to hear from you!

P.S. You can find both Drew and I on facebook if you are so inclined. We post plenty of pictures on there too!

Hard to Sum it Up..

2008-11-03T12:21:00.001-08:00

Halloween has come and Madam Fang, Jeff Gordon and Mommy's Little Monster are now distant memories....and

I can't quite believe it's November, 2008. The time continues to fly and I have not updated in several months. To tell you the truth, I have been avoiding it. In my mind, it seems that if I don't write it down, it somehow isn't true. It's a figment of my overactive imagination. But, alas, this is not the case, so I will continue to the news of late...

Let's start with Kirin and Cooper: They are doing tremendously well in school and in life....Well, there is a funny(?)story about Coop...He decided it would be a good idea to put his scissors in his pocket, take them to lunch and then proceeded to cut someone's shirt. Why, you ask? Which is what we asked as well, but never really got an answer. To which we responded, no computer for a month. Then it turns out he didn't actually do it at lunch, it was on the way to lunch after a project, which is supposed to make it understandable. In my mind, it is not. For Drew he has chocked it up to Coop being 6- so I guess we just have to roll with it. Kirin got tested for the gifted program again last week and both of their test scores have been through the roof. We have some friends in California who continually say to us "and you're surprised? Children of two engineers? Their doomed!"

As far as Griff goes, he continues to be happy and 'talkative' (he's in his crib right now giving me who and what for since I won't come pay attention to him), and his kidneys seem to be in check. However, it's the rest of the stuff we're now having to contend with.

He was officially diagnosed with severe cerebal palsy the first week of October, and just prior to that he began having what we have dubbed 'big seizures' (and they aren't pretty. He looks terrified and cries in pain during the longest 30 seconds of his life) as opposed to the mini ones he's been having since about June. He managed to have one of the 'big ones' and several of the mini while we were meeting with the neurologist, which helped make his case to the doctor. We were also informed during the visit that he is missing a large portion of the white matter in his brain. This means the signals go in, but they bounce around with no where to go (apparently white matter acts as insulation to neurons) and his ventricles are nearly touching the grey matter portion. So basically, his brain never really relaxes and this is the reason for his seizures. We are now on medicine number two, and he's down to 2-3 big ones a day. I have a feeling because of the short gut he's not absorbing enough of the meds to completely wipe them out, so this will have to be discussed with the Dr. It would also appear that the meds are suppressing any appetite he has, which is making weight gain a BIG challenge. He's been stalled at about 14.5 pounds for two months. Ugh.

We asked for a long term prognosis, we thought it better to know up front and the answer we got was this: Kids with CP and seizures can live a long life. Kids with CP and seizures can have the 'big one' and die. I (Dr.) don't know.

So, he doesn't know. We don't know. Nobody knows. Kinda back to where we started, but still no fun. I guess any one of us could get hit by a truck tomorrow and have it over in one fell swoop. This is a reality that most of us don't deal with, but now that I have absorbed it, I feel like I can deal with it. We don't know how long any of us have, so we must live every moment to it's fullest. Enjoy every day we have with Griffin knowing he's happy and loved and that he doesn't know any better. I know better, however, and this is something I am still working on getting over. And probably will for the rest of my life. But, what we do know is that we can't dwell on the sadness of it- that is paralyzing. Moving forward is the goal. One foot in front of the other, the sun comes up in the morning and we have lives to live. Difficult as it is some days, we still live and love every day.

The big kids gave us the best perspective- when we told them that Griffin will probably never be like them, and he has some major owies in his brain, Cooper responded with "So what? He's our brother" and Kirin said, "Yeah, so what, we love him no matter what." Ain't that the truth.

The More Things Change....

2008-08-22T12:22:00.000-07:00

Well, it's been a while since I wrote anything out here in blog space, so I've got some catching up to do....

The summer in a nutshell: The big kids finished kindergarten and 2nd grade, I took my first trip away for more than a day since Griffin was born, we went to DisneyWorld to celebrate by amazing sister's triumphant graduation from ASU, Griffin turned 1(!), I turned 35(!), we found out that Cooper is EXTREMELY allergic to fire ant bites, the YMCA camp here in Clemson SUCKS, Clemson is a much better place to live when the students aren't around, the big kids can both now ride their bikes with no training wheels, Kirin suddenly appears to be a fish, we got a Dunkin Donuts, the air went out at the house at 4 in the morning one Saturday in August and was out until the following Tuesday and school started up again- Kirin is a 3rd grader and Cooper is a 1st grader!

All in all, chaos and craziness.

Griffin is up to a bit over 14 pounds now, is 27 inches long and has finally started to laugh. We can really get him going if we kiss his neck and hum into it at the same time. Apparently, this is hysterical. He is also now game for playing by himself for about an hour at a time- which is a huge relief for our backs, and our need to do anything OTHER than sit and hold him for 4-6 hours at a time. For the most part he's doing okay- he's down to 6 hours a day on the feeding tube, which is fantastic. However, his blood pressure is now high, so we've got to add in more medications(upside of this is, he now takes naps :)), it appears he's having mini-seizures and his brain doesn't seem to be interpreting what his optic nerve is telling it (i.e. no recognition of toys or faces by sight. Plenty by sound though!). He had an EEG in early August to get a baseline of brain activity and to tell us if he really is having seizures. No results as of yet, and we couldn't get into the pediatric neurologist until OCTOBER.

I struggle daily with being thankful he's here and wondering why he has to go through all of this crap. But, as Drew points out, it is what it is. Asking why still doesn't get us anywhere, but then again, we're only human. I still have days where I rail at God or anyone else who will listen (normally the interior of the car, or my basement walls). I don't know which was worse- Griffin's 1st birthday or the first day of school. While I rejoiced that Griffin had reached the ripe old age of 1, it broke my heart to know that he really had no idea it was his birthday- he doesn't understand, he couldn't have cake, etc. But, as I watched my beautiful, fully capable, smart and amazing big kids march into the beginnings of a new school year, I found myself so very sad thinking that Griffin may not ever get that chance. Cooper was so concerned that he wasn't big enough or didn't know enough to be in 1st grade and I was overwhelmed with just how wrong he was. While I revel in the thought that Kirin and Cooper excel at all they do, it pains me to think that it all Griffin may do is struggle. No one wants that for someone they love, especiallly their kids.

I use to be a fundamentally happy person. In my soul, just happy, despite whatever got thrown at me I could always find a way to be Pollyanna. These days, it's much harder to do. I wouldn't call it depressed, I would call it understandable. But, I do find a way to smile and laugh, love and play- I live for my kids giggles- the best sound in the universe. This has not changed for me. So, I suppose, the more things change, the more they stay the same. My life is chaos, always has been as an adult, I roll with it the best I can and giggle when appropriate.

Milestones

2008-04-11T12:36:00.000-07:00

I never used to measure my life in milestones....I didn't care when I got my first (insert 'important' item here). I was pretty much pleased with what I had, didn't care to 'keep up with the Jones' or compete for the biggest prize. Graduating high school and college were more expected in my mind than something I surpassed or had achieved. I've never had a five or ten year plan or a list of things to accomplish by the time I was 30, 40, whatever. I have continually subscribed to life is a journey, not a guided tour. But with the birth of Kirin and Cooper, this expectation of 'life bullet points' changed slightly as I monitored their firsts, i.e. first tooth, word, crawl, step....With the arrival of Griffin the importance of those life bullet points increased monumentally. I have recently discovered that I still don't have a 5 or 10 year plan for myself, a list of things to do before I hit 40 or a need to beat someone to the dream job, but the milestones of my life are inherently tied to those of my kids. I pride myself on not living vicariously through my children, however, the need to follow their every move and how my inherent happiness depends on their achievements has suddenly become an overwhelming truth in my life.

I suppose this first hit me when Griffin hit 128 days at home on February 29th. He had finally been home more than he had been in the hospital. An accomplishment? Maybe...Milestone? Definitely. After he first arrived in this world we marked our lives minute by minute. This gradually improved to hour by hour and triumphantly to day by day. Once he got home it suddenly became week to week and I have just realized I'm now thinking month to month. He has crossed the 10 pound, 11 pound and is fast approaching the 12 pound mark. We found out last week his creatinine level has dropped to 1.3- meaning his kidneys are now functioning at about 30% and implies they are finally healing!!!!

But with these great accomplishments, I began to truly think about the many milestones he has yet to reach, and how he will have so many more than my big kids. We're actually paying attention to every one of the littlest details that we had just taken for granted with Kirin and Cooper- the first time he looked directly at us and smiled because he recognized it was Mommy or Daddy. The first time he will actually sit up without anyone holding on for the first time, the first time he uses BOTH of his hands to pick something up, the first time he picks something up, the first time he rolls over intentionally, the first time he rolls over without getting mad, the first time he understands being tickled and laughs about it, the first time he laughs, the first time he splashes in the bathtub, the first time he claps, the first time he eats his toes. With all that he's been through, these somewhat 'mundane' tasks will be noted milestones for him and for me. I have so many mixed emotions- I will be so very excited when they do finally happen, but I am weighed down with the overwhelming impatience and frustration that they have not happened yet. I do my best to stay upbeat and positive, to remember the joy in the little things....I mean he is a 'little' thing but as we near the milestone of his first birthday, I am reminded that he probably won't be able to have a birthday cake of his own- but we may finally have the joy of giving him pears or bananas instead.

So many things to track, mark on a calendar or put in a scrapbook (ha- like that will happen :)), that so few of us would ever think to remember. Milestones. Destinations. Accomplishments. How should you measure your happiness?

I know Griffin will one day finally look me in the eye and say 'More mommy, please. I'm hungry" and that will be the day we've had our cake AND eaten it too......

The Year that was 2007

2007-12-31T09:31:00.000-08:00

Let's just start off by saying I am SO glad this is the last day of 2007. While it has had it's small share of blessings, on the whole, it's been the toughest on record for me and the kids and right up there on Drew's list of ones he'd like to forget....

Since the last posting, we've celebrated Thanksgiving and Christmas, two months home with Griffin and a variety of illnesses for Griffin, Drew, Kirin and Cooper. I have somehow managed to avoid being sick (knock on wood), and take care of all of them. Multi-tasking to this point in my life has been a normal part of my day, but now it's a necessity! Between doctors appointments, laundry and kids homework, the house got decorated for Christmas and Kirin had a birthday cake, ON TIME! My brain has yet to completely wrap itself around the fact that Griffin is six months old, time did not stand still and we did not go through a time warp that landed us in the month of December.

Griffin gave us two great Christmas presents - he passed the 8 pound mark on Christmas Eve and his eyes have fully matured so no more eye torture appointments! He's looking like a duplicate of Cooper these days- same blank stare, round head and general serious disposition. Cute as a button and tons of fun, but we're still working on getting smiles out of him. It's a lot of work, but it does happen!

Cooper had a truly joyful holiday. Not many 5 year olds I know stop to look at books and clothes they open on Christmas morning instead of throwing them over their shoulder. He got his Dragonfire race track and a new bike and he is in seventh heaven. So very sweet. He even offered to be cinderella in order to play with his sister and her new three story barbie dollhouse.

Kirin lived up to her diva persona with her birthday and Christmas presents. Excited to finally open everything, but completely bothered to note who they were from and what they were. Her sense of entitlement is getting to be a bit much, but she has her moments..... She's definitely a Kirin- fierce and unique, girly and smart!

So this rounds out the year. We're at the beach for ringing in of 2008, avoiding the many projects we have at home, but enjoying some much needed downtime. The crazies kick in next week with me truly back to work and the rest of the daily machinations that make our life what it is.

Happy New Year and here's hoping 2008 is BORING!

Car Seat Test

2007-11-13T12:50:00.001-08:00

In the NICU, one of the requirements of graduation is a 60-90 minute car seat test, where they put the baby in the car seat, buckled in and set them on a cart until the timer goes off. They monitor whether or not they turn blue (their oxygen levels). Griffin passed with flying colors. What they did not tell me was- Griffin HATES the car seat. He loathes it. He despises it. He screams until he is blue in the face and hands, but obviously he's still getting plenty of oxygen.

We have been avoiding trips to public places because he still has his broviac (want to avoid germs), but 3 out of 4 trips to the various doctor appointments have been traumatic at best. Who knew I could drive with one arm tied behind my back? (I was trying to hold a pacifier in his mouth). Oh, he's testing me all right....

Today I decided we need to get used to the car seat and took him for a walk- him in the car seat, attached to the stroller, facing me. Thought this might be the ticket....I walked to the grocery store, normally about 15-20 minute walk. Took me 45. Stopped 6 times to try and calm him down, and took him out of the seat only once. Got him calmed down, put him back in and the second his heinie hit the seat- WAAAAAAAAAAAAAAAAAAAAAAAAAAAAAHHHHHHHHH!

He calmed down as we entered the store, but about 10 minutes in, it was on again. Took him out one more time and he was a perfect angel. All the little old ladies were passing by smiling and wondering why in the world I was sweating so profusely....So, I had a conversation with the boy. I simply stated that this is just a car seat, and he was not being hurt, and this is just something we have to do. I also told him that he's just going to have to get used to the thing, as we are a very mobile family. We do not stay at home all day every day. I understand that this is something new to him, but he's just going to have to get over it. I think the little old ladies probably think I've lost my marbles, as they were listening in as well as watching me calmly explain to an infant, tough cookies. I'm the boss of you and this is the way it goes.

Anyway, I let him scream on the way home and he fell asleep out of exhaustion about half way, making the trip just about 25 minutes. I will attempt this again tomorrow. Maybe to the Blockbuster. We've got to get him acclimated or this trip to the beach for Thanksgiving next week will be the longest in history.

In other news- his diaper rash is still roaring mad, but thanks to Theresa, my sister-in-law, I think we may have finally found something that is slowly working. He's up to 6 pounds 15.5 ounces (can't quite break that 7 pound mark yet) and 19.5 inches long. Still waking up at least 3 times at night.....

Kirin made straight A's on her very first report card. We're extremely proud, especially since 93% is an A! I've had curves before, but in MY favor. Tough stuff. She also completed standardized testing last week, which once we receive the results will let us know if she qualifies for the gifted program.

Cooper also received a stellar progress report for our big kindergarten boy. (Grades don't start until the 2nd grade). He's been doing a fantastic job with his behavior in class, receiving a 'happy note' every day for the last two weeks. In his class, each student has a cow. The cow sits in the grass. First warning it moves to the fenced area. Second warning to the barn. Third, a note home (but we like to say it got sent to the butcher....). Only made it to the barn once this year and when it doesn't move at all, you get a happy note. Complicated, but it works. If the cow flies(one of those plastic cows with wings from the toy store, hung on a string over the pasture), every one stayed in the grass for the day. Big stuff for kindergarten and it keeps us amused...

Anyway, that's all the latest for now. We go to the surgeon on Monday to have the broviac removed and we are VERY excited about that! I'll keep you posted on the rest....

Life at HOME!!

2007-11-02T18:58:00.001-07:00

Okay, so he's been home for 10 nights now. Have we figured it out yet? No way. Are we exhausted and cranky from lack of sleep? You bet. Do we care? No way. Are we thrilled beyond belief? You bet!!!!

It took three nights before I quit rushing around after 5 pm because 'Drew had to get to the hospital'. With Griffin on continuous feeds, the only reason we have to get up in the middle of the night is to add more milk to his tube and/or change his diaper. Which, in the first few days was only once a night. Strange to be waking up in the middle of the night after spending the last 3.5 months adjusted to not being pregnant anymore. Those middle of the night bathroom breaks during the 3rd trimester really do prep you for when baby gets home!

Anyway, Griffin has definitely enjoyed the 'quiet' of home. Quiet in quotes because Cooper is now suffering from 5 year old talk as loud as you can syndrome....We've had some adventures with leaking g-tubes in the middle of the night. The second night home he was crying pretty loudly and in walked Kirin offering her stuffed animal du jour as a comfort for him. 4th night home, she was now tuning him out and in walked Cooper crying because it had startled him enough to have a nightmare about being alone in the dark. We had 4 bodies in the bed that night (I think that's the night the tube leaked too....)

We finally got to enjoy our first Saturday at home in 4 months last week too. Nowhere we had to be and it was wonderful. Griffin got suited up for his first Clemson gameday and watched, pretty intently, as the Tigers throttled Maryland. We had vowed we would go nowhere until Tuesday this week, except for provisions, and we were successful. I haven't had to fill the suburban up with gas since last Wednesday!!!!

This Tuesday started his first round of doctor appointments post discharge. Pediatrician got to meet him in the morning and give him three shots. Oh, and he screamed the WHOLE way there as it was only his second time in a car seat. That afternoon we met with the nephrologist (kidney doctor), where we were informed that a kidney transplant is inevitable. He was trying his best to be optimistic, but wants us to be prepared in the next couple of years to proceed. Talk about getting the wind knocked out of you. Needless to say, I cried for about 4 hours that night. Couldn't just revel in the fact he was finally home from the hospital, now there's another mountain on the horizon we were hoping was not there.

He is up to 6 pounds 9.5 ounces today, still no iv fluids and he is resting comfortably in our arms. This should be enough, and I am thrilled but, I'm having a hard time this week separating the here and now from the future. I want to wake up from this bad news and just enjoy my boy. I'll get there, but just not today. I'm getting tired of asking why this happened to him, to us and getting no reponse other than, you were chosen for a reason. That, right now, is definitely not an acceptable answer. People keep telling me how strong I am, but I'm ready to be a blob now. I'm ready to be ordinary. I'm ready for Griffin to be ordinary and not have to fight like hell just to be a baby.

But, we plug along. Nothing we can do about it now, so we love, carry on and enjoy every moment we have with him. Only time will tell. Friend of mine at work told me Griffin was going to be Superman with all he's lived through and the only thing we'll have to worry about is Kryptonite. I like the sound of that!

One day at a time and POOF! it's time to go....

2007-10-23T18:47:00.000-07:00

Griffin comes home tomorrow. Griffin comes home tomorrow. I keep saying the words, but they do no compute. Griffin comes home tomorrow. I want to be excited, but I am so afraid of waking up and it being a dream, a figment of my imagination, that I can't be just yet. Last night as I sat writing a few thank you notes to the two nurses who have been Griffin's primary caregivers, I began to sob. I couldn't quite figure out why. But the more I cried, I began to understand. I was crying for the normal pregnancy I didn't have, the normal delivery I've never had, the overwhelming exhaustion of enduring 4 months of being constantly on the move and just having a baby. Then, I was crying for the agony that our little guy has endured, the fact we almost lost him and the miracle we didn't.

And then, a bit of fear set it. Okay, more than a bit. The next few months are going to be wonderful, yet scary at the same time. We have to take care of a feeding tube. We have to deal with home nursing care and medicaid and 6 differerent specialists. We have to do everything in our power to keep him from getting sick, because we have no desire to return to the hospital. We have two other kids to love and care for and teach.....and...and...and. At this point, I could have started hyperventillating, but didn't. I stopped the swirling thoughts and said to myself, he's our baby. He's OUR baby and he's finally coming home. We love him and he is an important member of our family who has had it rough for a while, and probably will for a while more, but he gets to come home where he will be safe. No more poking and prodding at all hours of the day, no more strangers taking care of him, no more beeps and alarms. Just Mom, Dad, Brother and Sister to laugh with, sing with, dance with and love with. Nothing to be afraid of anymore.

I'm going to end this post with a note of thanks I wrote to the entire NICU staff. I think it best sums up our feelings on the last four months with them pretty well.

Day in and day out for 127 days I have walked through those double doors of the NICU. June 19th, July 4th and now October 24th are the milestones in our lives. For many of you, Griffin finally walking out those doors will be a relief--Reflief of one more baby, one more parent and one more day at work- but I will forever remember these 127 days of 2007 spent in this remarkable place. Some good. Some bad. Some really, really bad. You have each cared for, loved and saved our baby boy in some way every day he's been here. I'm continually awed by Griffin's tenacity and strength, but he wouldn't be with us if it weren't for all of you. Griff will always be a part of this place, for the many things you've learned from him, and you will forever be a part of our family. Thank you for all that you do and loving all these babies.

19,200 miles down.....

2007-10-17T19:14:00.000-07:00

Things have been moving fast since the last post...

Griffin had gained enough weight to pass the 6 pound mark last week Wednesday. With that, the discussion turned to what we need to do next. This is because while he was busy doing what we needed him to do, his electrolytes got screwed up ( I believe this is due to a medication error) and they were busy trying to straighten them out, leaving me extremely frustrated. I also knew that the continuous feeds were going to have to continue indefinitely, which meant a G-Tube (surgically implanted feeding tube.) Knowing how surgery scheduling goes, as well the feeling we were chasing our tails and seeming as though he was being held hostage, I got feisty. As a result, one of the neonatologists called in a favor and got Griffin scheduled for surgery last Friday.

At noon on Friday, Griffin had his g-tube placed, an incisional hernia repaired and a circumsion. He came back extubated, which is a really good thing, but the poor little guy was not given any pain meds. Needless to say, it was an excruciating hour for him and us post op until the morphine kicked in. The surgery went very well, but it's hell to see an infant screaming in pain.

By Monday we had a new rotation of staff, and at rounds we had a new set of decisions as far as his feeding schedule. We are trying to get a GI specialist, renal specialist and neonatologist to agree on a course of action. It's a good thing I'm an organizer and listener. I have made sure I'm there every morning for rounds, as I have found I am Griffin's sole source of consistent care, and knowledge. I realize that if he had come home from the hospital a regular newborn, there would be no questioniong my knowledge of what my son needs or knowing how he responds to certain things, but being in this environment for so long, you can easily forget. With this, I have gotten feistier.

As a result, we are plotting a course to come home. No definite date yet, but we're getting close. The word 'discharge' is a normal part of daily conversation now, but I don't dare get excited. We're working to get him up in feeds and off of his IV fluids (TPN), but until this point they have been the necessary 10% bump he's needed to get enough nutrition to grow. The next two days will be crucial in deciding if it's time to turn them off. There's a couple of problems with him having to be on the IV post discharge: Longterm TPN can cause liver damage and the central line IV, called a Broviac, is at risk for infection. We're lucky he's at a very low rate on the TPN, which reduces the risk of problem number 1, but heading into cold and flu season, an IV is just a stress we can deal with, but would prefer not to.

So, that's where we're at with Griff. Close, but not quite home. He's four months old tomorrow. Hopefully we'll be home before he's four and a half.

The big kids are doing pretty good- getting geared up for halloween. Drew and I are getting pretty ragged. I made the mistake of calculating some very interesting numbers:

Number of days in hospital: 120
Number of miles driven since Day 1 (by both of us): 19,200 (Yes, that's 19 THOUSAND)
Number of gallons of gas: 1200
Number of hours in a car, to and from the hospital: 320

We're going to have so much time on our hands when he gets home!!!!!!!!!!!!!!!!!

So much for goo-goo and gaa-gaa.....

2007-10-08T18:56:00.000-07:00

You know, it just dawned on me- when I was a kid I said I wanted to be a pediatrician. By the time I hit high school/college, I decided that I had NO interest in biology. Boy, would some of that come in handy right about now. Let me share a few words we now have in our vocabulary, and can use freely and correctly in conversation.....

Ostomy
Renal Disease
Creatinine
ileocecal valve
bilirubin
conjugated bilirubin
hyperal
tpn
short gut
stillete
renal function
necrotizing
necrotizing endocolitis (NEC)
Periventricular Leukomalacia(PVL)
cerebal palsy
white matter damage
picc line
broviac
platelets
hemocrits
parateneal
ng tube
g tube
bone mineralization
mri vs. ultrasound
polycitra
bicitra
fortified breast milk
arterial line
oscillating ventilator
ventilator
pvh
full feeds
bolis
medicaid
case worker
social worker

People have been teasing me that I'll have a PhD in neonatology by the time Griffin gets out of the hospital- I'm thinking we're already there out of pure necessity! Oh, and when they told us as kids to read to expand our vocabulary, how wrong they were!!!!

He gained another ounce tonight- he's up to 5lbs 12.5oz and 19 inches long! We may just get to bring him home yet!!!! That, and the nurses have told me "We have yet to send one to Kindergarten!"

Keep your fingers crossed (and your arms, legs, toes...)

Keep on keepin on....

2007-10-04T11:55:00.000-07:00

Okay, the last one was a bit long winded and rambling, but it felt good to do- like a purge of all that has been in my head for quite a while.

Now for something a bit more coherent...

Griffin gained one gram yesterday. One. He didn't lose. Teeny, tiny baby step forward. They decided to fortify the breast milk late Tuesday afternoon in an attempt to increase his caloric intake. It helped him get a gram on. Woo-hoo. Gotta just keep moving forward. Just have to....

Have you ever seen the movie Real Genius? It's full of fantastic quotable lines, but the one that keeps coming to mind these days is "Take a step forward, take a step back, take a step forward and now we're doing the tango...". Apparently, Griffin likes to dance.......

Kirin decided to have issues in the past week as well. She decided to cut her hair on Friday night, in the bathroom, after she went to bed, unbeknownst to me or her dad. I asked her why, since we spent the better part of last year growing her bangs out to match the rest of it. She said, "I don't know". Perfect answer. I told her yesterday she looks like a fashion model now with her asymmetric coiffe. She asked me what asymmetric was. What can you do? Hair will grow back. She's obviously stressed, just like the rest of us, but I wish I could come up with something to lighten her load. She's only 7 for pete's sake. We've been talking to her and trying different things to help her worry less since then, seems to be working, but we will have to wait and see.

Cooper is doing okay these days. He is anxiously awaiting this weekend when he will get to play with his best buddy Caleb. Caleb lives out in the country and has a two seater battery charged John Deere kids tractor. Nuff said.

So, we keep on keepin on. Still don't know when Griff will be home, but we live to tango another day....

Man Plans, God Laughs

2007-10-01T12:54:00.000-07:00

I have three beautiful children, Kirin, Cooper and our latest edition, Griffin. He's the reason I've started this little foray into the blog world. Let me explain....

I married my amazing husband, Drew, a mere 5 months after meeting him and knew we'd one day have kids. In fact, it was something we both inherently knew would be an important part of our life. Drew had cancer in his late teens, making us wonder if we would even be given the gift of biological children, but this was a hill we were willing to climb when we reached it. Fortunely for us, this was not a problem. I had a Kirin in 1999 and a Cooper in 2002. Kirin was born 8 weeks early due to severe pre-eclampsia(we'll deal with this topic another day. Trust me, I have plenty to say about that....), spent 18 days in the NICU in Wilmington, NC and went home at 3 pounds 10 ounces with no complications. Cooper was born 4 weeks early for the same reason, but spent just the requisite 3 days in the hospital with a c-section recovering mom at 6 pounds 7 ounces. A thin uterus left him with his first haircut in the operating room and butterfly stitches, but no complications for him. I was 29 years old. I wanted more children, but thought, as did many friends and family members, let's not push our luck. So, for 4 years, I operated as though I would not have any other children.

On January 1st of this year, we became true believers in the statement, "Man plans, God Laughs". I was pregnant with my third. Scared to death, for baby and myself, we were very cautious about spreading the news. After the shock wore off, the excitement set in and many nights at the dinner table were spent discussing possible names for baby, with both big kids weighing in. A couple of brushes with high blood pressure were unnerving, but all seemed to be going well. Baby was due on Sept. 6th, give or take a couple of weeks (we figured take at least a couple), anticipating a early to mid August arrival. But, Father's day I had a headache that wouldn't go away, went to the hospital and within an hour, I was in the back of an ambulance on the way to Greenville Memorial Hopsital, where I was told the NICU is the best in the region, and hopefully we'll be able to postpone delivery a few days. I knew it was still too soon, and my initial fears were becoming blaringly true. To keep my blood pressure in check I needed to remain calm, but what I really wanted to do was scream at the top of my lungs, WHY ME? WHY CAN'T I BE NORMAL?

Griffin was born on June 19th, he had no name, because we thought we had more time to decide, and I was so doped up on magnesium sulfate and morphine, I was literally hallucinating in my 70's era decorated room. The guilt began to set in about the 3rd day, and a name was decided upon. Griffin for it's roots in a strong mythological beast and it's correlation to his sister's name (it's a mythological dragon) since she had spent time in the NICU and came out without a problem, Reilly for the middle (the big kids choosing). I also agreed to begin pumping breast milk, which I hadn't done for my older kids (long story) but I was attempting to give him every fighting chance imaginable.

For two weeks Griff was doing fantastic. For a 28 weeker he was off the ventilator after 3 days, never lost weight, was eating like a champ and we appeared to be on the same course as his sister. Then the bottom dropped out. He was diagnosed with NEC, a bacterial infection of the intestines that only affects 4% of preemies. They told us they should be able to treat with antibiotics, but by 36 hours post diagnosis, he was back on a ventilator and we were talking surgery. My husband and I were a wreck, but still managed to put one foot in front of the other. By 8:00 pm on the 4th of July, our little Griffin was fighting for his life. By 10:30, he was in surgery and our chances of losing our littlest boy were very high. The surgeon returned to us at 11:45 to inform us he had lost half of his small bowel and a third of his large intestine. "He has an ostomy, and we will just have to wait and see what happens". What the hell is an ostomy? Words were suddenly being introduced into my vocabulary I never would have imagined I would have to know. We walked back to the surgical suite in the NICU, to find our brilliantly active and feisty little man laying perfectly still, with an oscillating ventilator doing all the work for him. I could hardly breathe. I hurt everywhere, but was numb at the same time. Couldn't speak, couldn't cry. We clung to each other out of reflex, desperation and shear terror.

Over the next 5 days, we were walking zombies. Our kids were confused, scared and perplexed by the entire situation to begin with, now they had to contend with Mommy home from the hospital but an even bigger basket case than before. Griffin was in multi-organ failure, his kidneys were not functioning, the machines were breathing for him, his blood pressure was dangerously low. The thought of having to decide when to let him go was percolating in the back of my mind, but I wouldn't or couldn't allow myself to go there. Then, he peed on the nurse. Drugged to the hilt to keep him from being in pain, my baby boy tinkled and things began to improve. Never thought a fountain of pee would save the day, but it saved all our lives that day.

Our road has been excruciating since that Sunday in July. Griffin's low blood pressure, coupled with my high blood pressure (we think) caused a lack of blood flow to his brain, which has resulted in holes. They tell us he is at high risk for severe gross motor disabilities (cerebal palsy) and a possibility of mental disabilities. About 6 weeks ago, they told us he has permanent kidney damage as a result of being so very sick. I wanted to scream WHY ME?, now that was so selfish. I want to scream WHY HIM? HE'S JUST A BABY!!!!!!!!

Griffin had his plumbing hooked back up about 2 and a half weeks ago, only to find out that the rest of his large intestine was infected and had to be removed. No more ostomy bag, but no colon. Yeah for poopy diapers! But once again, WHY HIM? HE'S JUST A BABY!

Last Thursday marked 100 days in the NICU. My beautiful baby boy has never had a breath of fresh air. He's never felt the wind on his face. He's never seen his own house. He has no idea how good life can be. His address has been room 4, NICU, GMH, SC for the last 3.5 months. Today it really hit me when I had to write October 1st on a label for his bottles. We're back to contiunous feeds because of his short gut. don't really know when he'll be home. WHY HIM? HE'S JUST A BABY!!

October 1st and the littlest member of my family is still in the hospital. But, he's still with us and he's one tough little guy, and we've all found out we're pretty tough too. I know one day this terror will be a distant memory, but until then, I live it every day. So does his dad. So does his sister and brother. We're so lucky to have each other- it's brought us closer together (which is rare). Life will never be the same but it will be normal for us someday, whatever normal becomes. Once again, man plans and God laughs. Life is quirky and throws a curve ball here and there. You've just got to learn to adapt and when appropriate, DUCK!