Our Little Beanbob

Goodnight

2012-01-24T16:33:00.000-08:00

"Godspeed, little man
Sweet dreams, little man
Oh my love will fly to you each night on angels wings"

Wishing so badly that I could tuck you in your crib tonight. I love you. Mommy

Out Grieve Me

2012-01-23T10:13:00.000-08:00

Wow...I mean WOW! Please please take just 4 little minutes of your time to watch this video. I could not have done it better myself. These are REAL things that grieving mothers (including myself) have to put up with every single day.

Gifts from Gage update

2012-01-05T17:20:00.001-08:00

http://giftsfromgage.blogspot.com/2012/01/sorry-its-been-so-long.html

Wish you were here

2011-12-24T06:57:00.000-08:00

Sweet boy, how has so much time passed between when we took these pictures and today? Your only Christmas was in 2008. This will be our third Christmas without you. No matter how long it has been, we will always miss you and wish you were here.

The day that Emily asked some tough questions

2011-11-14T08:19:00.000-08:00

When Gage died 2 years ago, we had him cremated. It wasn't even really a decision, we just knew that it was right for us. We have his urn and Charlie and I each have a necklace that holds some of Gage's ashes. We always told Emily that the necklaces just helped us feel close to Gage. She was 3 when he passed away so she didn't really ask for a lot of explanations. Now she is 5. And very curious.

We were out on Saturday and we drove past a cemetery. She has been to cemeteries before, to visit great grandparents. When we drove by she asked "Why don't we have a spot like that for Gage? We could decorate it like those people did for their loved ones. I want to make a place for Gage." Taken completely off guard, I didn't know what to say. So I explained that some people have a place that they like to go to when they want to remember their loved ones, and some don't. I tried to tell her that we just like to put things by his pictures. She said she wanted to make something and put it in the yard for Gage. So I talked her into making something and putting it by his pictures. She was ok with that and she made something beautiful, all by herself. For now, she is satisfied with that answer. But as she gets older, she will have more questions. And I will answer her in the gentlest way I can.

Here is what she made Gage.

Happy 3rd Birthday Gage!

2011-10-13T07:31:00.000-07:00

Since it would be Gage's 3rd birthday, I wanted to tell you about the day he was born. October 13, 2008. I was 37 weeks along and I woke up feeling terrible. I went to our doctor and my blood pressure was through the roof. So she told me to go home and get my bags and my husband and come back in 2 hours for my C-section. I had to have a C-Section because Emily damaged my bladder during delivery and I did not want to risk that again. So we got to the hospital. There was some drama because I am highly allergic to DEHP, a chemical in most hospital plastics like IV tubing and IV bags. After a while, my mother in law came to our rescue with the tubing she had at her oncology office. So at 2:41 in the afternoon, Mr. Gage Warren Pruitt was born. He was 7 pounds 3 ounces and 19 inches long. When he was first born, he sounded like a baby kitten. It was a tiny little cry. They showed him to me for a brief second. I told him not to cry and he stopped. Then they whisked him away to the NICU to help him a bit. After I was in my room, I wondered where everyone was. Charlie wasn't there, Gage wasn't there, my parents weren't there. Where did they go? Well, Charlie was sitting in the waiting room wondering where I was. The nurses never told him that I was in a room. So I finally got in touch with him. Then my parents brought Emily. But where was my new baby? I kept asking, but the nurses just kept saying "he will be in soon". Apparently, everyone in my family saw him in the nursery. Finally, at 8 pm my dad went down to the nurses desk and demanded to have Gage so he could bring him to me. So he did. That was one of the most tender moments my dad and I have shared. I will never forget how proud my dad looked wheeling him in the room in his little bassinet. I finally got to hold my first son! It was wonderful. Emily was head over heels in love! I didn't sleep at all either night we were in the hospital. I just stared at Gage. We went home two days later and enjoyed our new baby. The first thing that Charlie did was show Gage World of War.Craft. A few weeks later was Halloween so we dressed him up and took him trick or treating with Emily. Gage was a great sleeper and loved to cuddle and he was a great breastfeeder. The first restaurant we took him to was Rosie's. Of course he slept the whole time. We were starting to get used to having two little ones to take care of and to love. Life was great. I wont' write about what happened next, because today is Gage's birthday and I am celebrating his life. So I want to share some pictures from those first few days and weeks.

Gage, Happy Birthday Sweetpea. Mommy sure does miss you. Look for the lanterns tonight. I am sending three to Heaven for you. I love you.

Sam's Birthday and a Big Trip

2011-09-20T10:30:00.000-07:00

My rainbow baby Samuel Tate turned 1 last week! I can't believe it's been a whole year since he changed our lives and gave us new hope. I still can't get over the fact that he is mine and he's not going anywhere! Life sure is different in every way after a loss. Here are some pictures of his big day. We really just had a relaxing day around the house. It was very nice.

.

Tomorrow Charlie and I will be leaving for New York City! I have been moderating the www.lalsolace.org online community for LAL Deficiency. There is going to be a reception for the members of the Wolman's Disease and CESD community; whether it be patients, parents, doctors, and pharmaceutical companies. I will be giving a speech about how our lives changed after Gage was diagnosed with this fatal disease. I will also be speaking about how I want this online community to grow and be involved in lots of the rare disease community events and activities. I am really excited because I have never been to NYC, and I am nervous because they will be playing the video of Gage that Charlie made not too long ago. I am going to be a crying mess. But if we can make an impact on the doctors that can help these patients...that would be wonderful. I really want to change the LAL Deficiency community. I want there to be more than 2 survivors of this disease. And I truly feel that this team of people can do it. And I can't wait to meet those I haven't met yet. I am so blessed to have this opportunity to know these wonderful people who truly care and want there to be a successful treatment. But man, I am going to miss the kiddos while I am gone! Please send positive thoughts my way!!!

Gage, I am so grateful to have the opportunity to honor your life in such a profound way. Please follow me along and hold my hand while I am speaking about you. I love you always, Mommy

From Another Life

2011-08-19T07:48:00.000-07:00

I desperately need to clean out the cabinets in our kitchen. They are all so unorganized. Especially the cabinet that holds sippy cups, spoons, and other stuff for the kids. I have been putting this one off for...oh say 2 years. Tucked in the back right hand side of that cabinet is a 2 pack of Gerber sweet potatoes. They have long expired. But I cannot yet allow myself to throw them away. Gage never really ate from a spoon, we did not want to stress him out any more than we had to, so we put sweet potatoes in his milk and he LOVED it. We did try a few times to spoon feed him, but he was unimpressed. And my thoughts were, you have been through chemo and a transplant...I will make life as easy as I can for you:) Over the past two years, I have thrown different things of his away that have gone bad...or I have thrown them out in a fit of anger. Of course, his toys and clothes and books are safely tucked away in various places. We have tons of pictures of him displayed and a curio cabinet filled with precious memories of him. So why can't I throw away 2 year old sweet potatoes that visibly have gone bad? Ones that are hiding so far away that Charlie doesn't even know about? Because if I am being honest...for a few months after he died when I was still completely in shock...I still had this unreal hope that he would come back. That somehow maybe just maybe oh please this was just a nightmare and when he got home he would be hungry and want his sweet potatoes. So yes, I will admit it to you, I was saving them for him. Just in case. And after I started coming out of the fog and realized that this wasn't a nightmare...this was real...I still kept them. And I still keep them. I don't have an answer anymore and my original answer would probably only make sense to another mother who has lost a child. But I just can't throw them out. Even though they are way back in the back of the cabinet...I know they are there...and it is another way to validate that Gage was real. He was my baby. He loved sweet potatoes. And I wonder if they know how to make his sweet potato milk in Heaven.

Mommy is really missing you alot today sweetpea. Emily started Kindergarten. And Sam is learning to pull up on things. I bet you are so proud of them. I love you. Forever, Mommy

Sam haz a sad

2011-07-26T08:13:00.000-07:00

Last week Samuel Tate, who is 10 months now, wasn't feeling so great. On thursday, he was running a little fever and was so very tired. He actually fell asleep on the living room floor holding a crayon. So on friday, I took him to his pediatrician. After some examining, Dr. D said it was possibly hand, foot and mouth. Sam had a little rash and a sore in his mouth. So Dr. D basically said tylenol and fluids. Over the weekend, Sam was more perky. Still sleepy but happier. Sunday night we put him to bed and he seemed fine. Yesterday morning I was suddenly woken up by a terrifying sound. Sam was choking. I am so glad his crib is in our room! I went over and grabbed him and he wasn't breathing. He was alert and looked at me like he was scared. I took him in the living room and rubbed on his back. He started breathing but it was labored. He looked a bit pale. I took off his pj's and his chest was retracting because he was struggling to breath. He would try to cough but it would just make him stop breathing again. I was PANICKED. I prayed to not lose another baby. I reached to call 911 but decided to call my mother in law (a former ER nurse who lives two streets over). Sam was breathing regularly by then, he just didn't sound right. She came in, listened to him and said he had Croup. I was like "is that BAD, should i PANIC?" And she very calmly said "when it first happens, it is very scary but right now there is no reason to panic." so Charlie rushed home (from about 5 mins away) and we took Sam to the E.R. Driving my son to the E.R. was very traumatic. You all know what happened the last time I drove my son to the E.R. He died in the car, was resuscitated, and died again 9 days later. But I tried to remain calm. An ambulance was driving right beside us so I felt comfort by that. I could always flag them down if needed. Sam seemed to do a bit better sitting upright in his seat so I felt a little more at east. When we got to the E.R. they took us right back...and put us in room 8. The exact same room we were in when we first took Gage to that same E.R. Our of all the rooms, they put us in 8. I didn't know whether that was a good sign or a bad one. Turned out, it was good. The nurse and doctor were so nice, and quickly confirmed it was Croup. They gave Sam a large dose of steroids and sent us on our way. Sam was very tired and clingy all day, so I held him much more than usual. We snuggled A LOT. I took him in for a follow up at Dr. D's office today. He still sounds wheezy but as long as it doesn't take his breath away, it should go away on it's own. Yesterday and today should be the worst of it. But I think Sam shaved 10 years off of my life yesterday morning. I had no idea what was wrong at first. I thought he was going to die. I was going through every possible scenario in my head. It was SO VERY SCARY. He seems a bit happier today and more willing to play. My stomach is still in knots. I asked Charlie last night "haven't we met our quota of bad shit?" To which he replied "clearly there is no quota, bad stuff doesn't discriminate or care if you have already had too much." Thanks for the vote of confidence Charles, lol! I realized that there is only one or two pictures of Samuel Tate on here, so here are some of the more recent pics. Such a handsome little fellow!

18 Bags

2011-07-12T10:53:00.000-07:00

I was able to make my first donation of Gifts from Gage bags last thursday. Check out the bags on the other blog:

http://giftsfromgage.blogspot.com/

2 years

2011-07-07T13:29:00.001-07:00

Two years without your smiling face. I love you.

Terrible Plans

2011-07-06T12:04:00.001-07:00

Two years ago on this day we had the care meeting for Gage. Which basically consisted of a lot of doctors telling us and showing us terrible things. Asking hard questions. I took one of my favorite pictures of Gage and made them all look at it, so that they would know that Gage was not just the lifeless being laying in the PICU. He was a real boy and we had real hopes and dreams for him. We were faced with making end of life decisions for our child. We had to fucking decide when he would die. Would we choose to let him stay in that state for an indefinite amount of time...just to watch his body tense so much that they had to administer morphine just because we caressed his face? Or would we choose to enter our own personal hell that would last the rest of our lives to ease our baby's suffering? Of course, there was no choice for us. As parents, we must do what is right for out children, no matter how much heartache it means for us. So after the meeting, I drove back to the RMH, went up to the library, closed the door, and called a funeral home. That was a moment I feel like I was outside my body, watching myself in disbelief as I said "We are taking our baby off life support tomorrow...can you help us?"

Then we went back to the hospital and told Gage the plan. Told him how sorry we were. Told him about all the people that would be waiting for him in Heaven. That we would see him again someday. That we would miss him and think of him every day for the rest of our lives. But I mostly sobbed that I was so so sorry. We read him books. Especially the Velveteen Rabbit, which became so very special to us. I have a tattoo of the Velveteen Rabbit for Gage now. At the end where the stuffed bunny becomes a real rabbit...I told Gage it was time for him to go and be a real boy. Without tubes and wires and medicines and machines and surgeries. Run and play. Laugh. Never have another tummy ache. Go where he could feel the sun on his face and the wind in his hair. Then we spent the night making plans for his celebration of life service...and how we would tell Emily that her baby brother was gone. We tried to prepare ourselves for the next day when we would tell Gagey goodnight for the last time.

Gage...I am in misery. I miss you. Remembering the details from these days makes my heart hurt in every way. I can feel it's brokenness. I am so sorry. I miss you. I love you. Mommy

Memories of not so good times

2011-07-04T14:36:00.000-07:00

Two years ago on the 4th of July I got to hold Gage. It took an act of congress to move him, his breathing tubes, ng tubs, drainage tubes, monitors, etc. from his bed to me. But we did it. My heart was shattered because the nurse had to pump him full of morphine and an anti-anxiety drug before we could move him. He never regained consciousness that week and a half in the PICU, but his body would still get very agitated. It was a terrible sight. But alas, I got to hold him. I tried to hold his hand...to will him to squeeze back, but there was nothing. While I was holding him, we received the MRI report from the specialist. We had just an ounce of hope left until he came and showed us the films. I didn't know exactly what I was looking at, but I knew it was very wrong. The scans of his brain were mostly white. They are not supposed to be white. He starting listing off all the many functions Gage had lost and could never regain. We talked about quality of life. We scheduled a care conference. After this, I was determined to take my sweet Emily to see some fireworks. I was sure that Nashville would have an awesome fireworks show somewhere. It started raining so they set them off hours early with no notice. We missed it. I felt like a huge failure as a parent. I felt like I had let them both down. It was a low time. So last year and this year I have cried all through these days. Remembering how it felt to hold him when he wasn't really there. Knowing that the next time I held him, he would die in my arms. Incomprehensible. I have told you all I would not show you pictures of Gage in the PICU because I want you to remember him smiling. But I will give you a glimpse of what it was like.

Me holding Gage as we were being told the devastating MRI results.

We wanted to keep him warm because his temperature kept dropping

Gage holding his favorite toy.

Gage, I miss you. I would have given my life to save yours. I love you. Mommy

The face of today

2011-07-01T07:10:00.000-07:00

This is how I feel today. 2 years ago Gage was in the PICU with no brain function, no response to our touches, unable to be touched without morphine. We were in hell. There was seemingly only one way to help our suffering child. We just had to wait for the test results to be sure.

Favors

2011-06-27T04:56:00.000-07:00

So I was preparing to write a post and tell you again how terrible two years ago today was. I was going to retell you of the terrible events that lead to this week and a half stay in the PICU. How I am dreading July 7th. But FOR TODAY, I am going to hold off on that. I would like to ask a favor, or two, instead.

Gage will have been gone two years on July 7th. I miss him terribly. One thing that helps the most is knowing he has not been forgotten about. So...would you please please please write his name somewhere and send me a picture? It can be something neat and original, or you can simply write it down on a piece of paper. Between now and next thursday, could you please take a moment to think of Gage and write his name somewhere. It would mean so much to see his name written by people who care! My email is marypruitt56@gmail.com.

Second, Gifts from Gage is starting to take off! I got a confirmation from the hospital and they are excited for us to get started. Please consider donating items or money. It makes me feel guilty to ask for money but I will do it anyway:) Please check out the website for further details. I will update it later today.

Thank you all so much for the support you have shown the past two and a half years. I wish I could show you new pictures of Gage doing awesome things. Playing, walking, talking. But I can't. All I have is memories of that beautiful smile.

2 years ago on this date

2011-06-24T06:39:00.001-07:00

Charlie took these pictures of Gage at the RMHouse the day before his last clinic visit. The day of the visit Gage's numbers all looked better than ever. His visit was on a Friday and we were told to prepare to move HOME the following Tuesday. But of course, that didn't happen. Two days after these pictures, I carried his lifeless body into the E.R. and screamed for help. I watched while they worked for such a long time to bring him back. I watched the monitor as his heart starting beating again. I still thought maybe it would be ok. But it wasn't.

Gage, I would give my life to see one more of your beautiful smiles. I love you. I miss you. It's been almost two years...but sometimes I still find myself looking at your pictures begging you to come back.

Gifts from Gage

2011-06-16T18:44:00.001-07:00

So I have been wanting to start this project for quite some time and have just been putting it off. Tonight I finally have the motivation thanks to a great friend to get this started. It's called...you guessed it...Gifts from Gage. We spent a week at Huntsville Hospital in the PICU before we were transferred to Vanderbilt Children's Hospital in Nashville. We also spent Gage's last days in the PICU at Vanderbilt. It occurred to me that the parents really needed some supplies available. Nobody expects to wind up in the PICU. They might not have a pen and paper to keep track of what the dr. is saying. They might end up spending the night and need to brush their teeth in the morning. So I started collecting items and would like to make parent bags for the PICU here at Huntsville Hospital. Gage will be gone two years in July. It is time for me to get started. I haven't figured out the logistics yet, but I am working on it. So please stop by and check out our new blog. Thank you SO much!

Why

2011-06-14T10:47:00.001-07:00

Why did you have to go...

I love you.

Two brothers

2011-05-23T11:57:00.000-07:00

Emily said today "If Gage wasn't dead, I would have two brothers to play with." She says things like this alot. A lot of times at bedtime she will say "If Gage was still here, he would be big enough to sleep with me." It breaks my heart for her to have an idea of what she is missing. The other day Charlie and I were both busy doing something and Emily was aggravated and said "If Gage was still alive, HE would play with me!" Oh, how I know ALL of these things sweet girl. It makes me so freaking mad. Charlie and I PLANNED the age difference of Emily and Gage so they would be close enough in age to play with each other. But of course, Emily worships Samuel Tate and he thinks she hung the moon. It is so eerily similar to what we just had....

Emily and Gage

Emily and Sam

Two years ago

2011-05-17T08:50:00.000-07:00

I cannot believe this happened two years ago. It was the very first weekend we had gotten to go home in months. We were allowed to come home just for the weekend and then return to the RMH Sunday night to be back in clinic for the week. We were celebrating how great it felt to have a glimpse of what it would be like to come home. The last two pictures are at our house. The first picture of Emily and Gage sleeping at the RMH is the night before we came home for the weekend. We miss you buddy.

I Miss You

2011-05-08T06:31:00.000-07:00

Wishing I could hold you one more time. I love you.

Emily's 5th Birthday

2011-04-26T10:59:00.000-07:00

I realized that Emily hasn't been shown on this blog for almost two years. And Samuel Tate has never made an appearance. So here are some pictures from Emily's 5th birthday party from a few weeks ago.

Pinweels

2011-04-15T08:16:00.002-07:00

Thank you Shauna from http://www.pinwheelsfromheaven.blogspot.com/ Gage's pinwheel is so beautiful. She will make a pinwheel in her garden for your Angel. Check out her website. Thanks again!

I can FEEL your absence

2011-04-13T17:11:00.001-07:00

These things...too small for Emily...too big for Sam. Just right for the two year old that should be here playing with them. I miss you Gage.

Blog Makeover

2011-04-07T11:34:00.000-07:00

I cannot thank Tiffany enough for my birthday present...a beautiful blog makeover! I have wanted one for a long time now and kept putting it off. So Tiffany just went ahead and made it possible. I love it! Thank you so much, my new and dear friend!!!

Two years ago

2011-04-01T11:39:00.000-07:00

Two years ago I was enjoying the freedom of walking Gage around the transplant unit where we lived. It seems like just yesterday...Missing you always sweetpea.

Birthday

2011-03-22T07:40:00.001-07:00

Today is my birthday. My second one without Gage. I feel like I have never missed him more. He would be 2 and a half. Old enough to say "Happy Birthday Mommy." Words cannot express how much I miss him. How much I miss all of the things that we could be doing together. All the hugs I am missing. The kisses, the snuggles, the chasing after, the playing...every single thing.

I miss this boy

These are the last pictures we took of Gage (that I am willing to share). They were taken 2 days before I experienced the hell of carrying his lifeless body into the emergency room...begging for help.

Gage...I love you so so much. So much.

What If

2011-03-11T14:00:00.000-08:00

I was thinking so much last night about all of the what if's. I was going to write a long post listing them all out. But really...there's just one that matters:

What if Gage was still alive?

I still plan to write my list, but none of them are more important than this one.

Gage...I love you. Emily talks about you all the time and draws pictures for you. And Sam...I KNOW he knows you. So many times he has talked and laughed at something over my right shoulder. Last night when I was putting him to bed, I showed him your pictures and his eyes immediately lit up in recognition and he smiled and talked to you. I wish just once I could see what he sees. I miss you. Mommy

Suddenly

2011-02-16T12:39:00.000-08:00

Suddenly, without warning...I am reliving that last day...those last excruciating moments. For the first few months after Gage died, I was haunted by those memories almost every night. It was torture. Now, 19 months later they are not regular...but they still take me by surprise. The sounds...I will never forget. I kissed his cheek and it smelled like the tape that had held his ng tube in for the past several months. I sang him lullabies that I will never again be able to sing without crying. Then it was over. It felt like our lives were over too. They might as well have put us next to him in his crib, all swaddled, waiting for the funeral home lady to come and get him. I have never felt so powerless. So hopeless. So lifeless. The walk out of the PICU...torture. The ride down the elevator with complete strangers who had to have known because we were bawling...carrying a boppy and a diaper bag...but had no baby with us...complete torture. Then...the drive to the RMH...to break our sweet, innocent Emily's heart...torture I cannot even put a name to. Then came the silence of the ride home with the three of us, an empty carseat, and all of our stuff that had been hurriedly packed up from our months in the RHM. I slept some...and then pretended to sleep the rest of the way home. I remember we had some Steak Our gift cards and used them at some point in those first few days. The lady came to the door and asked how are you today? I was a complete zombie and answered "my baby died.". She put down the food and gave me a hug. A terrible irony occurred the day Gage died. Vanderbilt did regular surveys about the quality of care we received. Because we basically lived there, we got a lot of these calls. I usually didn't mind. We had been home about an hour and I wouldn't have answered the phone but I saw it was from Vanderbilt so of course I answered. There was a lady asking if I would like to do a survey about the quality of care that Gage received at his last clinic visit. I SCREAMED at her "Don't you know my baby just DIED there....TODAY...you stupid bitch!?" I kind of regret saying that...but COME ON PEOPLE! Then the hospital sent us a sympathy card...three months later...and spelled his name wrong. They got a mean letter from me that apparently brought at least one of them to tears. Gage's birthday is in October. In August of 2009, one month after Gage died, I got a magazine announcing "Your big boy is turning ONE!!!" and had all kinds of baby's first birthday party supplies. I returned the magazine asking them *nicely* to take me off of their mailing list. Sigh. Why does all of this have to be so hard?

But I am thankful for the opportunities that I have been presented with to honor Gage's life. The pharmaceutical company that is involving me in their effort to make a difference in these babies lives. I am thankful for the new friends that have entered my life...friends I never would have found if it wasn't for Gage. My sweet sweet beautiful Gage. I have met and become a part of a whole new community of baby loss mommies. Ladies who understand me. Who understand what a TRUE friend is. Who allow me to say what is on my heart and mind...without judging. Ladies who will not cringe when I say Gage's name. So thank you for my blog friends and my REAL LIFE friends who have either stuck with me this whole time...or who are just now coming BACK into my life...or who are NEW. Thank you for accepting this version of my old self...but MOST importantly...thank you for loving Gage!

New video!

2011-02-06T09:55:00.001-08:00

This is a video we made of Gage's battle with Wolman's disease. It will be featured on the Synageva website, as well as the new LAL deficiency website.

A Sign

2011-01-31T12:13:00.000-08:00

I got a sign from Gage! Not just a sign....the EXACT sign I asked for! I am so overwhelming happy that my little guy wanted to show me that he loves his mommy:) I used to get bunnies ALL the time for the first year after he died. Then, they went away for a while, and I was so sad. Now I am getting signs in other things...I just didn't know what to look for at first.

Gage...I miss you and love you. Forever, Mommy

Drama

2011-01-26T10:33:00.000-08:00

I hate drama. Especially family drama. But that is what's happening right now in our extended family. I am heartbroken and confused. I cannot focus. Which is a problem!

I am supposed to be working on the website that the pharmaceutical company and I are putting together for Lysosomal Acid Lipase Deficiency. It is being developed right now and I am super excited. I will be the forum moderator and I cannot wait to see what discussions we can come up with!

My birthday is coming up and I want a blog makeover! I promise I will put more pictures up soon. Of Gage, Emily and Samuel. It has been so long since I posted pics, I don't even remember how...that's pretty bad!

Ok, enough rambling. Sorry for being so all over the place today...that's just how I feel:)

Irony, etc.

2011-01-12T20:31:00.001-08:00

I was lying in bed trying to get to sleep when I had a ton of thoughts flood my mind. So I decided to share. Aren't you lucky?! These are just random thoughts...so bear with me:)

When Gage was very sick, we got TONS of get well cards...and we read and loved every one of them. One of them, however, has never left my mind. The sender had written "God will heal Gabe!" at the bottom. I'm not sure who Gabe is, or if he, in fact, was healed. I hope so. I hope Gabe is running and laughing it up right now. But my GAGE was not healed. He died anyway. Another person called and said "God will not let your baby die." That's a pretty dangerous thing to say my friends. If God does exist, how does anyone know what He will or will not do? Anyway, she was wrong. Very, very wrong. I wonder what she thought after he died. Or if she did at all...

Gage died because he had an infection in his central line. The central line he would have died without. The central line that allowed him to get so many transfusions, his chemo, his cord blood transplant, his anti-rejection meds....everything. He HAD to have it...but it killed him. He developed an infection...a blood infection which turned him septic. Which let to me driving down the road frantically trying to get him to breathe while he was going into cardiac arrest...which led to the worst week of my life...and then to letting him go.

I had to get his medical records last week to send to the pharm. company we are working with. I thought I could handle it. I couldn't. I thought they would be in order of his life...but they were opposite. The first page was his "death summary". It took my breath away to see the most personal, private moments of my life written out in unloving medical language. I learned a few things that surprised me. Things I knew deep inside but weren't willing to let myself think. What a shitty week.

I went through his cedar chest tonight. Of course everything has lost it's Gage smell now that it's been in that box. But it was so nice to again see how lovingly my husband had organized everything. I probably would have dumped it all in there and slammed the lid closed, but Charlie had carefully folded clothes and organized everything in a nice arrangement. I played the music on some of his toys. I bawled. There is one song that is only in my head and I am terrified of forgetting it. Gage had a mobile in his hospital room that he LOVED. I would wind that thing up countless times a day and it played a little song. A song I have never heard before or since. So I have to keep playing it in my head. I am going to be soooo heartbroken if I ever forget it. Sometimes I will just randomly panic and make myself play it in my head so I won't forget. Can I say how much I HATE being a grieving mother?!?!!? It FUCKING SUCKS. There...I said it.

Gagey, I am trying. So hard. Please please please visit me in my dreams. Mommy misses you. Your brother is sooo adorable and I know you have seen him. Sometimes he smiles and talks over my shoulder...I think he sees you. I love you beanbob. Forever, Mommy

Another Christmas

2010-12-25T07:46:00.001-08:00

It is very hard to believe that this is our second Christmas without Gage. It was awesome to have a baby in the house again at Christmastime, but of course the last one we had was Gage. He seemed to really like the lights on the tree and we have a picture with him and all his loot. Most of those toys have yet to be played with. I really don't have a lot to say today except that while we had a fun time decorating and opening presents, Gage was not far from my mind.

Also...my trip was phenomenal! There are many details I cannot share, but meeting Dakota's mom was the highlight of the trip! I will share what I am allowed to in another post.

But for now, Merry Christmas sweetpea. I love you!

Leaving on a jet plane...

2010-12-15T10:37:00.001-08:00

And I am scared shitless. For the past month or so, I have been talking with a pharmaceutical company called Synageva. They are working on a treatment for Wolman's Disease. Some of the people from there came from Boston and talked with Charlie and I a few weeks ago. They want to have us actively involved in the parent/family aspect of this horrible disease. They want to basically use us to get this disease and drug noticed in the medical community. Right now, there is no urgency. But we HAVE to change this. So I am headed to Boston on Sunday to meet with more of the team and get a better idea of what I need to do. I am ready for war against this disease. It is so unfair that there is really no good information out there about Wolman's. No websites. No support groups. Nothing. And there is no specific treatment. Gage's transplant was a desperate attempt to save his life. A lot of the babies with this disease are not healthy enough to even have a transplant. That is what Gage was just the 6th person to have the transplant. Synageva is focusing on Wolman's Disease alone (can you believe it!) and they are taking a different approach to treating it. I don't know how much I am allowed to share, but just know that they are VERY hopeful this will work. Now the main problem is to get hospitals, doctors, and families to KNOW that this drug exists (once it gets approved by the FDA). It's already a monumental challenge to get doctors, hospitals and families to KNOW that Wolman's Disease even exists. So we have a lifetime of fighting to do. But I am up to the challenge. I will do this for Gage because I WANT to and I HAVE to. Please cross your fingers and toes that I have a safe trip because I am TERRIFIED of flying. But I will face my fears for Gage. Gage was very brave for me...so I have to be brave for him. I will write about my trip when I get back next week. I am ready to help out other parents in a way that we didn't have help. Information. Hope. We felt so helpless that nobody knew about this disease. We could look it up and find one stupid paragraph. None of our nurses knew what it was. We got so many blank stares. If I can instill HOPE in one person, I will be more than satisfied! Off I go!

Gage...please be with me as I travel. Know that Mommy is doing this for you. I love you and I miss you. I wish I could have fixed it, but maybe I can help another mommy fix it for her baby. Forever, Mommy

Seconds

2010-11-24T17:36:00.001-08:00

Everyone said that the "firsts" would be the hardest. The first holidays, birthday, etc. without Gage. And they were right...mostly. I am done with all of the firsts. Now I move into the seconds. And they hurt just as bad but in a little bit different way. The first time you experience something without your child, you are thinking of all the things they/you are missing out on. You can think (in some cases) "this time last year...". But the second time you do these things, there is that same pain PLUS the added sting that...Wow...I've had to do this TWICE!?! I suddenly realized that this is the second Thanksgiving without Gage...I am THAT much further away from when I had him with me. And next year will be further and the year after that will be even further and eventually the rest of my life will have gone by...without Gage. He would be two years old for this Thanksgiving. He would be eating everything with us and running around playing with Emily and his cousin. But he's not here. Time will keep moving forward without him. I think that is one of the cruelest things about it all. Time keeps going. I can dig in my heels all I want to keep it still, but it just moves forward...and drags me with it.

Happy Thanksgiving Gage...Mommy loves you

Lonely

2010-11-12T11:54:00.000-08:00

I have felt so lonely lately. Part of it is all my fault. I am not good at seeking out situations where I could socialize. I want to, I just don't. I feel "safe" at home, so I stay there...and complain about it! I was a member of a group of moms and they were so good to us when Gage was sick. After he died, I stayed away for an entire year. Recently, I was brave and went to an activity of theirs and was so disappointed at what I heard. Most of the moms were complaining about how HARD it is to be a mom...and especially how hard it is to be a mom of more than one. They decided to have a psychotherapist come to their meeting and talk to them about how stressful, hard, DEPRESSING it is to be a stay at home mom. Wow. I was completely speechless. I know that it's not always wonderfully exciting to be a mom. It CAN be stressful and hard. But really? So, I felt WAY out of place. And I will admit that two years ago, I may have been involved in this awful conversation. But I have lived an entire lifetime since then. A lifetime of worry, heartache, hell. So I don't feel like I belong with this group anymore. So where do I go? Who wants me now...that I am different...BITTER...cry easily...get my feelings hurt easily...anger easily...AHHHH!!! Most of my true friends live in other states. There is really nobody that I can call and say "hey, you want to go to dinner, a movie, the park, for a walk, ANYWHERE?" There are really only 2 or 3 people that actually call me. What happened to me? I want friends. I need friends. Don't I deserve friends? Do I expect too much of them? Do I make them feel awkward when I talk about Gage? I do include him in my conversations with other moms. I need to reach out more to the babyloss community online. There are so many moms who feel the same things I do. I see where some of them meet up and I feel so jealous. It would be so nice to talk to someone who KNOWS. Who would ask me questions about my Gage. But I need other friends too. I realize that this has been one big pity party. I apologize to anyone who is actually reading this! I am thankful for the new group of ladies that I have been adopted by. They are great and have included Emily in their playgroup, which is great for her. And for me:)

Dragonflys

2010-10-15T12:46:00.001-07:00

A thousand tears or more these eyes have cried and a thousand more lay in wait -I am bathed with them and yet my heart is still broken, and all that is within me aches with the loss of you, the wanting of you.
There is never a time for this that is right-never a way that can prepare the heart for this reft -you have passed through my arms too soon, like sand flowing through fingers. I could not hold you here, though I would try.
I know that your spirit flies free and in the quiet depths of my heart, I can see you still in the rhythm of the waves upon the shore, in the crisp fall air that fills my chest, in the iridescent gleam of each dragonfly skimming the surface between heaven and earth.

Cheated

2010-10-10T15:36:00.001-07:00

Gage's birthday is this week. He would be 2 on Wednesday. Two years old. No longer a baby, but a toddler. I am feeling so angry and jealous today over all the things he/we are missing out on. I am so mad that he died. We were so close to victory with his illness. What on earth happened between his clinic visit on friday morning with everything was "the best it had every been" to that very night when things rapidly declined and I ended up carrying his lifeless body into the hospital crying for help the very next morning. I will never forgive myself for not taking him earlier. It doesn't matter that medically it would not have made a difference, but my heart feels differently. We were cheated out of my son's life. And I don't like it one bit.

First week home

2010-10-01T15:54:00.001-07:00

The first week home with Gage's little brother has been wonderful but surreal. Sam is such a good baby and reminds me so much of Gage. He is a good eater and sleeper and has a laid back attitude. We have starting doing all the "firsts" again and we have been able to enjoy our new little man. I certainly worry about him more than I did the others at this point. I look at his belly approximately 1. 5 million times a day. And I check to make sure he's breathing twice that often. Emily wants to know why he can't play with her like Gage did. I have to remind her that Gage was bigger and could play where Sam will have to grow into it. I am making so many new memories with Samuel. I am afraid I will forget some of my memories of Gage. I know that I am just a ball of emotions running wild right now and things will level out. I am just so happy yet so sad at the same time. I guess that's just how things will be for a while, like the next 60 or so years...

Samuel Tate

2010-09-23T11:54:00.001-07:00

Gage is a big brother! His little brother Samuel Tate was born last Thursday, September 16th. He had some trouble breathing so he has been in the NICU for the past week. Hopefully we will get to bring him home next week. It has been so surreal to have another baby in the hospital. I thought for sure that this baby would not need tubes or wires. But there he is, surrounded by the all too familiar sounds of the hospital. At this point, it is terribly painful to separate my memories of Gage from my reality of Samuel. I feel like I am back in that nightmare and I cannot believe that we have to do this again. I know I sound pessimistic, but damnit, this is so unfair! Samuel Tate is doing wonderfully and at this point has no real medical issues. They are watching him to make sure he has regulated his breathing for 5 solid days before they send him home. He has come very far from this time last week when he truly had breathing problems. This should cause no lifelong effects and in a couple of weeks all of this should be behind us. But it was heartwrenching to once again come home from the hospital with no baby. Poor Emily is confused but at least she gets to see him once a day for 15 minutes. Hopefully the next time I update, Gage's little brother will be home! This makes me love and miss Gage even more if that is possible. Samuel is so sweet and makes such sweet baby noises and faces. I have fallen in love!

today.....

2010-09-14T16:11:00.000-07:00

Gage-I miss you.

Dear Gage

2010-08-27T17:13:00.000-07:00

Dear sweet Gage, you are so in the forefront of my mind these past few days as I prepare to meet your little brother. I fondly remember preparing to meet you. We had to take your sheet off of the crib today to put in the baby's new bedding. It had been under the blanket for over a year but to my breathtaking surprise...it smelled just like you. That was about 4 oclock. It's now 7 and I haven't gotten over the vivid smell of you and the image in my mind of you lying in your crib that last night before you crashed. I miss you. I stayed up for over an hour in the middle of the night last night looking at your pictures. You are so beautiful. Your smile melts my heart. No matter how many other children I have in my life, you will always be my beanbob. My little buddy. My sweetpea. My Gage. I love you, Mommy

2010-08-18T12:38:00.000-07:00

I am sorry to all of us:

who have had to sit waiting for test results for our babies
who have watched our children being wheeled back for surgery
who have had to get used to changing dressings, flushing tubes, getting up every few hours to give medication, taking temperatures on a schedule...the list goes on
who have gotten used to hearing beeps, drips and whirs of machines and find it too quiet in a room without these noises
who have sat in a room where you can barely see your baby because there are so many poles with bags and machines going between you and them
who have had to answer questions about what is wrong with your child on a regular basis and had people give you a blank stare because they have no idea what you are talking about
who understand what it is to truly live for our children
who have had to make sacrifices with your other children in attempt to save the other one's life
who have had a meeting with the doctors and nurses to decide what "quality of life" you want for your child
who have walked away from that meeting knowing that your child will die the next day
who have had to watch those children die
who have come home without them
who dread the question "so how many kids do you have?"
who now live a different life where you can literally stare off into space for an entire hour and you wonder what your purpose is now
who hesitate going out where it's possible you could hear one of "those" songs and then be rendered useless for the rest of the day
who have trouble thinking of your child without all of the medical stuff
who miss their children with all the fiber in your being
who put up with other's ignorance about how long you should grieve and how you should do it
BUT MOSTLY:
I am so sorry to all of us Mommys and Daddys who love and miss their children. Every day. Every night. Every moment. Forever.

So much

2010-08-06T12:19:00.000-07:00

There is so much I want to talk about, but I feel that if I opened up, I would be here writing for the rest of the day. So I will try to keep it short. Charlie and I went through Gage's crib last weekend. It was so surreal to take all of his clothes, toys and blankets out and sort through them. We had three piles. Stuff we can share with the baby, stuff we wanted to put away in the cedar chest that were very special and then the last pile was the most precious stuff that I couldn't bear to put away forever. I put them in a special bag that has Gage's name on it that I put by the bed. This way, I can just reach in, look in, or smell anytime I want. I was so disappointed at one point because so many people had suggested to put some of the things that smell like Gage in Tupper.ware to lock the smell in. Well, it doesn't work. They all just smelled like plastic. Really the only thing left that truly smells like Gage is his diaper bag. It has the outfit that we wore to Vander.bilt that last horrid time. It smells like sick, but bless his heart, he smelled like that alot. And I know that it will soon lose it's smell being in the cedar chest. But we got through it and are able to re-use a lot more things than I thought we would. I am really glad we waited the whole year to go through this. We just weren't ready before. We would have put everything in the cedar chest!
So now, the crib is empty except for Gage's bedding. I asked Charlie if he wanted to take it out, and he said "it's not hurting anything in there." I think he just wasn't ready yet. I cannot wait to take out the sheet and hold it to my face. Gage slept on that sheet for a few nights. I love being close to things he touched. It helps me feel close to him.
A little over 6 weeks from now, we will have our new little man. I have to admit, I constantly worry about this new baby. Pregnancy is so different this time. It is no fun when you know too much. I treasure every kick, but get almost physically ill when I don't feel him for a while. I am so concerned with all the things that could go wrong in this final stage of pregnancy. The other two times I was in this stage, I thought I was in the "safety zone" and nothing could happen now. How I wish I was still in that world! I want this baby so bad, I cannot wait to hear him cry! I think I will be one of the few new parents who look forward to the crying, diaper changing, constantly feeding.....all that fun stuff! It will be so much easier doing those things at HOME, and not in a hospital.
Well, I wrote a lot and this is just the tip of the iceburg, much more to come soon! Thank you for still reading! Mary

Just another blah day

2010-07-15T06:34:00.000-07:00

Time goes on, but my love for Gage remains the same. Sometimes I feel that Charles and I are the only ones who feel this way. We had wonderful participation in the balloon release we had for him last week, but there were some very key players missing. Some very close family members were "too busy" to take 5 minutes out of their lives to honor Gage. They didn't even call us. Hmmm, too busy....that excuse doesn't register with me. Over a week later, this still stings. But for everyone else who was busy but released a balloon, called, emailed, texted, or just thought of us last Wednesday, I humbly thank you. To know that there are people who truly care about us means so much. Some days I feel so alone. Everyone is going about their business; going to work, driving around town, grocery shopping, going to a movie, anything really... but I have to STOP and think that those very people could be hurting too. They may see me as just another person living their lives, not realizing that I am brokenhearted too. I have just (mostly) learned how to take a deep breath before I get out of the car, hold my head high and blend into the crowd. Ready to see someone I know that asks how I am. Sigh. Enough of the pity party....for today:)

Emily has terrible poison ivy all over her legs. I feel so bad for her. She could have gotten a steroid shot except that she just got her vaccines on Monday and our Dr. didn't want to put too much into her system at once. So we put creams on her feet and legs and hope it helps with the itching.

I have gestational diabetes again. Big surprise! (not) But it's going ok so far and I can cheat quite a bit and keep good numbers:)

As of today, we have 10 more weeks until we meet our new little man. It has been fun yet sad to organize his clothes. To see what I am willing to use of Gage's and what I cannot bear to use. Of course, there is still the dreadful task of going through the crib, which I feel I have somewhat turned into a shrine. I don't want anyone to touch those clothes, blankets and toys that are in there. But realistically, I have to go through it. I have to let that part of Gage go. We will still keep everything, it will just be put away instead of where I can see it, smell it and feel it everyday. But I bought a cute 31 bag to put some things in to place by my bed so I can still have it when I need it. For the other things, we have a cedar chest my mother in law gave us. But I am going to be honest...it kind of resembles a little casket. We had Gage cremated so I didn't have to put him in a box. But now I have to put all of his things in a box. ARGGGGGGG.....sorry, I went back to the pity party...it's hard not to go there.

Well, I am off to tend to my daughter's giant poison ivy whelps!

July 7, 2009

2010-07-06T17:56:00.000-07:00

A year ago on July 7, 2009, we lost our sweet little man. This has been the longest, yet shortest year of my life. It certainly does not feel like a year has passed since I rocked our precious baby to sleep for the last time. His pictures are everywhere in our house. His crib is still filled with his clothes and blankets and toys. Our hearts are still aching to see his beaming smile again. I still wear his urn necklace around my neck.

Dear Gage,
Mommy and Daddy miss you. We love you. We are so sorry we couldn't fix it. We think of you every day. I love you more than there are stars in the sky and more than there are grains of sand on the earth. I want you to know that every moment was worth it. Goodnight beanbob. Forever....Mommy

Post from a year ago today

2010-07-01T07:34:00.000-07:00

This is such a hard time for me. I can't help reliving every day we spent in the PICU with Gage. Not knowing....
This is what Charlie wrote a year ago today:

After having to wait for doctors who cared about Gage to come back from Thanksgiving break...and waiting for test results during the Christmas break...now the 4th of July is going to make us wait again.

Since Gage is not making any purposeful movements, the doctors are finding it very challenging to do any really informative neurological assessments. The big test will be an MRI...but they can't do that until 5-7 days after the trauma occurred; and the holiday weekend is going to push that back until Monday. So Mary and I will suffer through the weekend, waiting.

Now that the sedation has fully gone out of his system, he is pretty much back to where we were on Saturday. He moves and opens his eyes without focus or purpose. And sometimes, he acts like he's got his pacifier...which of course he doesn't. Instead, he has a breathing tube, an NG tube, and an NJ tube vying for space in the back of his throat.

He is quite puffy and swollen from all the fluids they had to give him. Those same fluids have made his lungs swollen...which they are trying to correct.

After talking to the infectious disease doctors yesterday, and the other swarm of doctors during rounds in the PICU, it is clear that this whole event was brought on by an infection in the blood. Because Gage has a suppressed immune system, this type of infection is particularly devastating...which is why he degraded so fast.

So, we will wait for the MRI, and hope that in the meantime they can wean Gage from the ventilator, and he shows signs of improving.

June 26

2010-06-26T08:37:00.000-07:00

This day a year ago was the last clinic visit Gage had. Everything "looked" perfect and he was "never healthier." I had bought him a few developmental toys to get his motor skills up and he played with them when everyone got back home for the weekend. We went to Target and we had a great afternoon. He rolled from side to side for the first time. We were having a wonderful day knowing that the very next week may be THE week we got to move home for good. But then....he started getting sick. And we had a terrible night that led to.....the next day, which started the hell we have endured for the last year.

I love you Gage. Mommy and Daddy think of you always.

Father's Day

2010-06-20T15:30:00.001-07:00

My sweet baby Gage, how I wish you were here today and every day. This time last year, we didn't realize that we only had 6 more days with you before you crashed. These next two weeks will be such torture for me. Well, even more so than usual. It hurts me so bad when people forget your special days. When I am extra teary and nobody asks why. I guess they just don't want to hear it for the millionth time even though I long to say it. To say your precious name. I cannot comprehend that we are too quickly approaching one year without you. July 7. What on earth will I do that day? I wish you could have stayed. I wish that we could have saved you. We tried so hard. I love you, Mommy

June

2010-06-01T06:43:00.000-07:00

I thought June would be a touchy month. I just didn't know how much it would effect me when the calendar turned from May to June. Most of last June was great. Gage's numbers were getting better every week. He was starting to roll from side to side. He looked fantastic. There were a few setbacks, but those were to be expected after a transplant. Charlie stayed home one week while the rest of us were at the RM House. That week he deep cleaned the carpets, washed all the curtains....got the house ready for a immune-system compromised baby to come home to. We had been told that we could probably return home with Gage within a month. We were so excited. Our lives were still stress-filled with clinic visits, twelve meds given 4 times a day, and constantly watching for any signs of infection, rejection...anything bad. The weekend he became septic and our nightmare began he looked the best he had ever looked his whole life. So this month, every day will be remembered. We didn't know our time with our baby was almost up. We knew we had a long road ahead of us, but who cares when you have a boy who is so beautiful, such a fighter!

I once read that being pregnant with your rainbow baby isn't all it's cracked up to be. I couldn't agree more. I want to get excited but there are way too many "what-ifs". What if this baby has what Gage had. There isn't much worse than a fatal disease. I am worried that something will happen to him while I am pregnant. I am simply worried. I am trying to think of all my blog friends who have lost babies and then had another healthy one. I was doing "ok" until I realized it was June. Gage is a constant thought running in my head and in my heart. I am making room in those places for this new little one. This is really hard!

Wow

2010-05-26T15:33:00.000-07:00

So, we totally thought that our rainbow baby was a girl. But we had our official 20 week anatomy scan today and the baby is very much a boy! Everything looked "perfect", although I know that in reality, a "perfect ultrasound" doesn't show things like Wolman's Disease. But I am NOT going to think about that right now. I am going to plan for a healthy baby boy!!!!! All the pink stuff I got will go back and will be trade for boy stuff. And I will have to decide what, if any, things of Gage's that I will feel comfortable using for the new baby. I am full of emotion right now. I had mentally prepared myself for a baby girl and started to get excited about having 2 little girls in the house. So now, I have to picture Emily with another little brother. A boy that's not Gage. But still, a sweet, awesome little boy! Can you believe it???

News

2010-05-20T06:32:00.001-07:00

So I am finally brave enough to announce it on this blog. We are 19 weeks pregnant with our rainbow baby! She will be here in September. I am having such mixed emotions. I have to remind myself that this baby is not Gage. It is a new little person that we will love and get to know. But how am I supposed to look at this new life and not think of the one that we lost. Don't get me wrong, I am excited, but it's different now. When I was pregnant with Emily, I knew there were things that could go wrong....but those things happen to other people, right? While I was pregnant with Gage, I sensed something was wrong. I had a nagging feeling that wouldn't go away and even though all of our tests came back "perfect", I knew in my heart that this child was sick. With this baby, we used what I like to call "creative measures" to help make sure this baby will not have that fatal disease that took Gage's precious life. I don't have the feeling of dread and worry this time. But, now that I have lived on 6a at Vanderbilt and at the RM House with all of these wonderful kids with these terrible diseases, it is hard to me to believe that there are perfectly healthy children out there. Even though Emily is perfectly healthy!!!!! I have to daily remind myself that out of all of the people I see in the world, NONE of them has Wolman's Disease. But it sure feels different when YOU are the statistic. But I hope hope hope that this new life will come into our lives and prove to us that she is healthy! And that one day we can relax and just enjoy her sweet baby smell and those priceless coos. Emily is SOOO excited that it is a girl! She kept saying she hoped it was a girl because "boy babies die". My poor sweet Emily. When she plays dolls, they all have tubes taped to their faces and their baby jars become medicine bottles. I do think this will teach her to be even more compassionate to people than she already is. We are having fun going shopping for baby stuff. I got a bunch of pink clothes the other day, and she picked them all out herself! I am so proud of her for coming through this tragedy bruised but strong and as loving as ever.

We will always love and miss Gage. This baby is not to replace him. We are simply adding on to our family. This blog will change to a blog for all of my babies, with a strong focus on our Angel baby Gage. He changed our lives so profoundly during his 8 months of life. I finally found my voice and I am not afraid to stand up for what is right or to fight against what is wrong. I have made new friends and lost some old ones. I am so bipolar! I can be laughing and then I hear or see something and I am a tearful mess. I have no control of my emotions now! But I am more compassionate now and I am willing to listen, step in, help where I am needed. Most days:) Other days, you will find me on the couch with the blanket over my head. But thank goodness, I have a great family who loves me on both kinds of days!!!

2010-05-19T17:18:00.000-07:00

Gage, I miss you. I love you. I just want to cuddle with you. Mommy

weekend

2010-05-11T08:21:00.001-07:00

This weekend nobody at our house mentioned Mother's Day. And that is fine. Emily and I went shopping with my mom and that was kinda fun. I went to Kentucky to see my parents and it was so good to get back home last night. I get homesick very easily. When I am gone, I long to come back home to Gage's pictures, his urn, his things.

I am struggling lately. Sometimes I let the bad memories overtake the good ones. And the scenes play over and over in my head. I need them to stop.

Something good is coming our way. I am just not ready to tell you what yet. But I will get brave and tell you soon.

Gage, mommy loves you and misses you...always.

Missing Gage

2010-04-30T12:25:00.000-07:00

I am feeling so lonely lately. I can rationally realize that my friends cannot sit around all day by their phones simply waiting for my call. But the irrational part of me still gets me feelings hurt when I call 3 or 4 people and nobody answers. Silly, I know.

Whoever said time heals....is full of shit. The only good thing that time has done for me is to help me put on my *happy face* when we go out. But it's not real. I am hurting on the inside. I miss Gage more than I can bear sometimes. And I feel that my support is dwindling. I do have a few people that I can really talk to. And fewer that I cry to. So many people just expect parents to just go back to "normal" after their baby dies. Well, sorry but that is not going to happen. Holding your child and feeling them die changes you. Forever. Fighting with every ounce of your being for your child's life and losing...changes you. We can still laugh and have fun. But we can never experience that truly innocent naive happiness that we had before. It is gone from us.

We watched the videos we have of Gage the other night. It was so very bittersweet to hear his voice, to see him smiling, to see him react to our talking and tickles. Why can't he still be here? Why on earth did he do SO DAMN GOOD through his transplant to cure a FATAL DISEASE and then have to die from a STUPID INFECTION????? We had to go to a care conference to decide when to take Gage off of life support. I felt like I was watching a movie or something. It didn't seem real. They showed us all of the white parts on his MRI from when he stopped breathing on me while I was driving like a maniac to get to the E.R. They showed us the EEG that didn't show a lot of activity. I kept thinking that this cannot be my son. My brave boy who smiled through chemo! He cannot be gone. He did not deserve to lose his fight. But the transplant had weakened his precious body where it simply could not fight off an infection.

So here I sit while Emily naps. Crying. Again. 9 1/2 months later Gage's hamper still has dirty clothes in it. I cannot bear to take them out and wash them because they smell like him. His crib is still in our bedroom and now holds all of his clothes, bibs, blankets, socks, toys, boppy, etc. I cannot even begin to think of how I will be able to take them out. Underneath those things is the sheet he was sleeping on when he got sick and we realized we'd have to take him to the hospital.

There is so much more I want to say. But I will wait for another day. I am tired. I miss my sweet baby.

Blog

2010-04-12T15:44:00.000-07:00

I have been giving this some thought lately...I am going to close our caringbridge site and focus on this blog. I feel I can speak more freely on here than I can there. It is easier to post pictures here. I have pictures of Gage that were taken a couple of days before our world fell apart. I want to put them on here. I am just not ready. He is so happy and smily. Those are my last happy pictures of him. Once I put them up, there will be no more "new" pictures to share.

I want to do a blog makeover. I have seen so many awesome ones! I want to start sharing things about different aspects of my life. Of course, I LOVE talking about Gage, so there will still be plenty of that! So please bear with me while I figure out exactly what I want this blog to be. Thanks for checking in!

Pain

2010-03-12T10:19:00.000-08:00

Tomorrow is a special day. It is March 13th. A year ago tomorrow, we embarked on a quest few have dared travel. We set out to cheat death. Gage received his stem cell transplant. We were trying to replace that all important enzyme he was missing. We were so optimistic. We had big plans that he was going to be the 4th survivor of this terrible disease. He was the 6th person to ever even be treated for Wolman's Disease. And we had high hopes that we would succeed. You want to hear the ironic part? Technically, we did it. At day 100 post transplant, Gage was doing phenomenal. He was 97% donor. And we had just sent out the test to see if we had successfully replaced that life-allowing enzyme. Then our world crashed down. A week after his death, our doctor called to tell us the bittersweet news. Gage had the enzyme. The transplant worked. But it had also led to his death. What a double edged sword.

A year ago, we had decided that Gage would have 2 birthdays. One on October 13th, the day he was born. The other would be on March 13th, the day he was given a second chance at life. But tomorrow will come and go with no celebration. I am sure that almost nobody even remembers. But his daddy and I do. And tomorrow we will remember how Gage bravely faced chemo and a transplant, all the while looking at us wondering what the big deal was. He loved the attention he got from all the nurses and he learned how to be a great flirt. I am glad that he was able to spend his life surrounded by people who were loving and caring. His smile melted hearts so he got lots of attention. My greatest happiness was that he KNEW he was loved by everyone, especially his mommy, daddy and big sister Emily.

Most of all, I just miss my little beanbob. I love you Gage.

Mommy

7 months

2010-02-10T08:17:00.000-08:00

It has been 7 months since Gage died. It seems like an eternity yet it is like it was yesterday at the same time. So much has changed and yet, so much remains the same. Emily talks about Gage often, asking why he died. She asks if we can please have another baby that won't die. I don't know how to answer. Charlie and I are staying strong together. We are so lucky that our marriage is surviving such a tragedy. Sure, we are more apt to snap at one another, but we understand where it is coming from. We are both more loving, understanding, yet more cynical than we were before. And who can blame us? Apparently some people can. I was recently dumped by one of my "best friends" because I am not grieving the way she sees fit. While her betrayal certainly stung, it made me realize who my real friends truly are. To those of you who were my friends before this and decided to stick it out with me, I love you! So thank you to Christy, Katie and Tassja!!! To my new friends who are willing to come on board in the middle of this storm, when I need you the most, thank you too! Jennifer (Hatcher's mom) and I were instant friends when we were in 6a together and she has been one of my best supports though this. I am so thankful for you!

With the new year, we are coming up on many anniversaries related to Gage. On Feb 4th, it was a year since we got the diagnosis. That was a horrible day. We had been holding our breath for months, waiting to hear that some mistake had been made, that it wasn't a storage disease. But that didn't happen. I will never forget that phone call. Holding Gage so tight after we had hung up with Dr. R. Realizing that the transplant had only worked in 2 children. Hoping we would be the 3rd. We officially moved into Vanderbilt on the 26th of this month. I can't believe it has been a year.....

I am hoping to make some progress with the research of Wolman's Disease this year. There simply isn't any out there. I am going to write, call, mail, email, whatever it takes until I get a response. The University of Minnesota has done the most research. Which is one article. I want to get Gage's information up there. We have got to give these babies a better chance! If anybody has any ideas on how to do this more effectively, please let me know.

Well, that's enough for now. Through all of these words, the most important thing to say is that I love and miss Gage very much. And I want to say Happy Birthday to my loving husband Charlie!

Love, Mary (Mommy)

2009

2009-12-31T14:01:00.000-08:00

As this year is ending and everyone is preparing to celebrate, I find myself hesitating. I usually look forward to the new year but I am not so sure about this time. 2009 was both the best and worst year of my life. It was the best because I had two sweet children. Because I had such hope that we could beat the odds and save Gage's life. It was Gage's only Valentine's Day, his only Easter. It was the only birthday I had while he was alive. The only wedding anniversary that Charlie and I got to celebrate at the zoo with two beautiful children. It was the best because of all of the magic moments between a mommy and a baby boy. It was the worst because that perfect baby died in my arms. Because his daddy and I had to make a decision that nobody should ever have to make. Because we had to leave the hospital with nothing but a diaperbag. Because we had to drive the 2 hours back home with Emily staring over at am empty car seat. Because instead of moving the 4 of us home for good, we came back with 3 and an urn. Because of the pain that we have constantly endured for the last 25 weeks. So it seems that I would want to move on to a new year, to new hopes. The problem is...Gage isn't in 2010. Yes, his memories will always be in my heart. But his heart-melting smile is in 2009. His snuggles are in 2009. The way he kicked his one foot out of the covers while he slept is in 2009. The way Gage and Emily played together is in 2009. I don't want to have to say my baby died last year. It just seems so far away. Time can be cruel. It just keeps going while Charlie and I sometimes feel like we are standing still. I don't want it to be 9 months since I lost him. It is creeping up on me. I don't want to be without him longer than I had him. I just want him. So, even though we do have specific hopes and plans for 2010, I would gladly do 2009 again, just to get one more smile, one more cuddle, one more smell of his hair,one more everything.

Gage, I love you and miss you so much. Please keep sending the bunnies. Mommy

2009-12-25T13:43:00.001-08:00

Merry Christmas sweet baby Gage....I miss you. Love, Mommy

My world (by Gage's Mommy)

2009-12-14T11:06:00.000-08:00

I am not the same person I used to be. I live in a different world than I did a year ago. I live in a world where children die, no matter how much you don't want them to.

I live in a world where there are still fatal diseases, like Wolman's Disease, that continue to take lives without remorse. I just met another family whose lives were shattered by this terrible disease. Sweet Dakota passed away friday evening. Wolman's is so poorly understood. By the time that most babies are diagnosed, they are too sick to go through with the transplant. There are two survivors of this disease. Two. That is hard to even comprehend.

I am not ok. I act like I am some of the time, but I am not. I am angry. I am jealous. I am devastated. I live in a world where dreams really do NOT come true. Where miracles do NOT happen. Where prayers are NOT answered. Where the words "Merry Christmas" send a wave of nausea through my body. Where people who abuse, neglect or mistreat their children are allowed to keep their precious bundles of joy, but MY baby who is loved and wanted and cherished, is taken from me. A world where I can think of six (off the top of my head) very precious children fighting a battle for their lives and more than that who I got to know on 6a or the RM house that have died.

To say I am dreading Christmas is an understatement. I am faking it for Emily. I could not bear to put up our Christmas tree but since Emily insisted on a TREE, I put up a palm tree with a string of lights on it. This time last year, I still knew the meaning of the word hope. It has been replaced with disappointment.

I miss Gage. I hurt for Gage. I hurt for the families who are missing their children. I hurt for the families caring for their sick little ones. I just hurt. And I am mad when people around me act like nothing happened. Like I am not dying on the inside.

My arms ache to hold Gage, to rock him, to pick him up, to carry him. My eyes ache to see him. To see him light up when he smiled. My ears ache to hear his sweet voice cooing, his grunts, his cry. My nose aches to smell him, that sweet baby small. My lips ache to kiss him, to run them over his hair like I loved to do. My hands ache to change his diaper, to get him dressed, to make his bottle. My feet ache to walk with him, to walk to his crib to get him. To take him to clinic, or to the park. My voice aches to sing to him, to tell him I love him. My heart aches to feel his happiness, his warmth, his love.

I miss you Gage. I love you. Mommy

Thank you

2009-11-26T11:00:00.000-08:00

I can feel Gage's absence today...and everyday. The high chair is empty. His crib is empty. My heart has a terribly empty part that is just for Gage. I can literally feel the emptiness; the absence of him. He was such a beautiful baby. Since today is Thanksgiving (even though I'm trying to ignore it) I thought I would write some things I am thankful for.

I want to thank Gage for being so sweet, loving, bashful, beautiful, happy and for being my baby boy.
I want to thank Gage's little body for being strong enough to make it through the transplant so that we could have almost nine months with our precious boy.
I want to thank Charlie's work for allowing him to work from home so that he could spend time with Gage at the hospital and then it allowed the four of us to live together at the Ronald McDonald House for those few glorious months. By allowing him to work off site, he did not have to miss his son's life.
I want to thank the Ronald McDonald House for welcoming us into their facility. We were able to stay in one of their three suites, so we had a space to really live in. When I think of Gage, I think of him there. Of how Emily and Gage were able to get to know each other, play together, eat together, sleep together...everything a "normal" brother and sister would get to do. We were happy and hopeful there.
I want to thank Dr. Frangoul and Dr. Domm for never giving up hope on our little guy. For being honest in a gentle way. For preparing us for the transplant and what was to follow. For coming in the PICU at the end and kissing him on his forehead. For loving him.
I want to thank the particular PICU Doctor and nurse who kept their promise to me.
I want to thank Charlie, the most perfect husband, for keeping me focused on our goal and who so gently cared for Gage.
I want to thank Emily, who doesn't know it but is saving my life, day by day.

Thank you Gage, for changing me into the person I am now. I wish you were here to have Thanksgiving with us. You and I spent last Thanksgiving in the hospital together, not having any idea what was wrong with you or what was ahead of us. But you were so brave. Thank you for coming. I wish you could have stayed. Mommy loves you.

Today.....

2009-11-17T12:22:00.000-08:00

I am missing you. I love you sweet baby.

Happy Halloween Beanbob

2009-10-31T06:45:00.000-07:00

Happy Halloween baby Gage. I desperately wish you were here to trick or treat with us again. I am so glad you got to go with us last year. You were so cute dressed in your little pumpkin suit. My love for you is so strong and I miss you terribly. Aunt Tassja made a pumpkin for you. I wish you could be here! I love love love love love you. Mommy

Happy Birthday sweet Boy

2009-10-12T16:45:00.000-07:00

Dear Baby Gage,

Tomorrow is your 1st birthday. I am dreading it. I feel like someone is pulling me along toward it but I keep digging my feet in to stay away. What all would you be doing by now? Crawling, standing, laughing, saying mama? How many teeth would you have? What would we have picked out as your birthday party theme? While other people are preparing for their little ones' parties by buying balloons, streamers, decorations and cakes, I am standing here staring at the cake mix I bought to make for tomorrow. Instead of happy songs and looking forward to you digging your little hands into the cake and making a big mess, I will be mixing together cake mix, sorrow, longing and tears. There will be no big mess to clean up. There will be no cute pictures to take. There will be no presents to watch you open. While others are buying balloons to tie to mailboxes to indicate where the party is, I will be releasing 8 baby blue balloons, with notes attached, to send to you in Heaven. While others are picking out cute outfits to wear for the big day, I will be doing my daily ritual of holding your clothes and blankets and doing my best to catch a scent of you. I miss every part of you. Your sweet baby smell. Playing wheels on the bus with you. Rocking you. Watching you sleep. Feeding you a bottle. Watching you play with Emily. Your beautiful, sweet, precious smile. Nobody has ever smiled as sweetly as you. You truly melted my heart. Your daddy and I are so lost without you. I hold your urn often, trying to feel closer to you. I kiss your picture each night. But it's not enough. I need you. You made us so proud, little man. I am so sorry I couldn't fix it. I hope that wherever you are, you feel warmth, happiness and love. Happy birthday, sweetpea. I love you, Mommy

Random Thoughts

2009-09-15T08:09:00.000-07:00

It has been 10 long weeks since my precious Gage died in my arms. I rocked him, sang to him and tried to comfort him the best I could. As soon as they unhooked him from the ventilator, I had to stop myself from taking him and running away so that we could be all alone. I didn't want all the monitors beeping and all the doctors and nurses peeking in from time to time. They did the best they could to make it private, but we were still in the damn hospital. I wanted to be at MY house, rocking him in MY rocking chair. The house is too quiet. It should be chaotic. I should be running myself ragged keeping up with medicine schedules, feeding schedules, naps, baths, playtime....all the while keeping up with a very active three year old. Instead we have a crib filled with baby clothes that I smell every day and a room filled with a bassinet, a baby swing, a carseat, a bumbo seat, a bouncy seat....all the stuff that should have a baby in it......but they're all empty. Sometimes I feel like I am empty and that I am just going through the motions. Emily does keep me busy, but sometimes I just want to lay in bed all day with the covers over my head. We have been abandoned by a lot of our friends and even some of our family. What we crave most is "normalcy" but we feel very set apart. Like somehow, our grief and our loss is contagious. I know people mean well by leaving us alone, but PLEASE talk to us. Yes, we are different and will never be the same. But we still like to talk and laugh and play games. Don't forget about us. And please don't forget about baby Gage.

I love you sweetpea. You will always be our little beanbob. I hope you hear me every night. Mommy is lost without you.

"The mention of my child's name may bring tears to my eyes, but it never fails to bring music to my ears. If you really are my friend, please don't keep my from hearing this beautiful music: It soothes my broken heart and fills my soul with love".

We do appreciate our few faithful friends that call and email us. That allow us to talk about Gage and our pain, yet also let us talk about everyday things. They let us laugh and cry and scream and cuss. We love you!

(written by Gage's mommy)

Song

2009-08-28T07:09:00.000-07:00

Emily was watching a Winnie the Pooh movie yesterday and Poohbear starting singing. He sounded very sad so I listed to what he was singing. I realized that his song very much expresses how I feel about Gage. So I thought I would share it. (Mary)

Come out moon
Come out wishing star
Come out
Come out
Wherever you are

Im alone here in the dark
All alone and wide awake
Come and find me
Im empty and Im cold
And my heart is about to break
Come and find me

I need you to come here and find me
Cause without you Im totally lost
I've hung a wish on every star
It hasnt done much good so far
I can only dream of you
Wherever you are

Ill hear you laugh
Ill see you smile
Ill be with you just for a while
But when the morning comes
And the sun begins to rise
Ill lose you

Because its just a dream
When I open up my eyes
Ill lose you

I use to believe in forever
But forever is to good to be true
I've hung a wish on every star
It hasnt done much good so far

I dont know what else to do
Except to try to dream of you
And wonder if you are dreaming too
Wherever you are

Wherever you are

4 weeks...

2009-08-04T07:03:00.000-07:00

It's been 4 weeks today since we lost our little man. Mary and I try to stay busy, but everywhere we go, we are reminded of Gage. I've never experienced anything like this before. I'm always pretty reserved with my emotions...the only emotion I'm really comfortable with is anger. But the last month has been really awkward for me because I feel like all my feelings are just out in the open.

It might be something someone says, or a baby in a store, or an outfit on a hanger, or any of a million things that will immediately trigger an emotional response. Just when we think we might be safe, something will bring us right back to the day we lost Gage. And I know that Mary agrees that night time is worst.

But I keep telling myself to think of the positive...the light Gage brought into all of our lives. He was a strong little guy; a fighter, and he was always smiling. He brought our family closer together, and for that I am truly thankful. Gage will be sorely missed forever, but we will always look back on the time we had him with happiness.

We love you, little buddy.

No words...

2009-07-07T19:18:00.001-07:00

Yesterday we met with a team of doctors to try and get a consensus about Gage's prognosis. After reviewing the MRI and the EEG, everyone felt that not only was Gage's brain damaged beyond any sort of meaningful recovery, but he was displaying no signs of being able to breath on his own. Mary and I made the incredibly painful decision to remove him from life support.

Today, after the doctors checked him one last time without any sedation, we said goodbye to our precious little baby boy...and all of our hopes and dreams that included our little man.

Gage Warren Pruitt died this morning at 11:35...and he took a piece of mine and Mary's heart with him. Words can't describe the pain we're feeling. Our little fighter smiled his way through an entire stem cell transplant only to be taken out by an infection days before we were to move home. Gage was a special little guy, and will live on in our hearts forever.

Rather than have a funeral for him, we are going to have a celebration of his life later this week. I have but one thing to ask: I respect the various beliefs of our friends and family. So, out of respect for my beliefs, I would ask that no one mention any of the tired old cliches...like "God's will", "God's plan", or "a better place". The fact of the matter is, the best place for our little man is right here in our loving arms. However, his life was destroyed by a disease that is very rare and poorly understood. Mary and I have lived the past four months in a place where every little bald head speaks volumes about the existence of an all-loving god...

Gage, we love you and miss you...we'll always remember all your smiles.

Bad news

2009-07-04T15:57:00.000-07:00

The neurologists came to talk to us today. Basically, most of Gage's brain has been significantly damaged. Apparently, his brain stem remains mostly intact, because he is breathing when they do the trials on the vent. He has a very weak cough, if any at all. It's hard to tell whether he tenses because he's agitated, or because he's coughing.

We are going to have a meeting Monday with all of the different specialists, as well as Gage's transplant doctor, to try and get as much information as possible and see where we really are. Unless something drastic happens, I will wait to update this site until Monday, after we've met with the doctors.

Small victories

2009-07-03T19:07:00.000-07:00

Gage's liver and kidney functions were improved today, and his lung x-ray from this morning was much clearer than yesterday's. They've been weaning him from the ventilator slowly all day, and he's done well with that. They even turned the vent down so that he could breath on his own for a bit and he tolerated that well too.

He still gets quite agitated when he is messed with for diaper changes and when the nurses change his position. His blood pressure rises, his eyes roll back, and he gets stiff. However, they have meds that they give before they do anything to him so that he remains calm.

He still does not exhibit any gag reflex, and his cough is very questionable. It's very difficult to tell whether he's coughing or just tightening up because he's agitated.

After having prepared ourselves to wait for the MRI on Sunday or Monday, we learned that there would be a radiologist available to read it tomorrow. So, he got the MRI of his brain this afternoon. Although we were happy that they were able to do the test, we are quite anxious about the results. These test results are critical, and could be a decision point for Mary and I. We'll try to get some rest tonight, and try and ready ourselves for whatever the doctors tell us tomorrow.

This is really quite a roller coaster of emotions. There are many little things to be excited about...but then there are things that are less encouraging. As if that weren't bad enough, many of the things we see could be really good...or really bad...depending on the physical reason behind them. Babies just break all the rules, and the waiting is absolute torture. Here's hoping we'll have some fantastic news about the MRI results tomorrow.

Screwed by yet another holiday

2009-07-01T17:08:00.000-07:00

After having to wait for doctors who cared about Gage to come back from Thanksgiving break...and waiting for test results during the Christmas break...now the 4th of July is going to make us wait again.

Since Gage is not making any purposeful movements, the doctors are finding it very challenging to do any really informative neurological assessments. The big test will be an MRI...but they can't do that until 5-7 days after the trauma occurred; and the holiday weekend is going to push that back until Monday. So Mary and I will suffer through the weekend, waiting.

Now that the sedation has fully gone out of his system, he is pretty much back to where we were on Saturday. He moves and opens his eyes without focus or purpose. And sometimes, he acts like he's got his pacifier...which of course he doesn't. Instead, he has a breathing tube, an NG tube, and an NJ tube vying for space in the back of his throat.

He is quite puffy and swollen from all the fluids they had to give him. Those same fluids have made his lungs swollen...which they are trying to correct.

After talking to the infectious disease doctors yesterday, and the other swarm of doctors during rounds in the PICU, it is clear that this whole event was brought on by an infection in the blood. Because Gage has a suppressed immune system, this type of infection is particularly devastating...which is why he degraded so fast.

So, we will wait for the MRI, and hope that in the meantime they can wean Gage from the ventilator, and he shows signs of improving.

Hurry up and wait...

2009-06-29T20:32:00.000-07:00

After being admitted to the hospital, some of Gage's labs were heading in the wrong direction. The doctors chose to sedate and paralyze him and put him on an oscillating ventilator. Though this machine works wonders, it's not exactly the prettiest thing. It breaths for you by puffing air into your lungs far faster than you would breath on your own...so you sit in the bed and bounce.

However, we had a small victory this morning when Gage's blood gas levels were such that he was able to "graduate" to the regular ventilator. He was also removed from sedation. Since then his lungs have sounded great and his blood gas levels remain stable.

The next hurdle he faces is showing the doctors how much brain function he has. As of 9:30 when I left his bedside, he was still unresponsive; only barely opening his eyes on occasion. There have still been no purposeful movements. The doctors now must wait to see if he has the ability to keep his airway uncompromised...and that means coughing and gagging. If he still has these reflexes somewhere inside, then he may be able to breath on his own and stay off the ventilator. Then it will just be a matter of time before we know how severe his injuries are. If he does not retain these functions...it means Mary and I have a very difficult decision to make...a decision we've made and accepted in our minds, but not in our hearts.

So, we are in a waiting mode...which is very nearly maddening. One moment, we are happy and hopeful, and the next we are devastated. Hopefully tomorrow will bring some answers...and some hope would be welcome as well. We're dying to know how much of our little guy is left inside...

So close...

2009-06-27T19:42:00.000-07:00

Things have taken a drastic turn for the worse.

Yesterday, we were so excited to be going home. Gage looked great, smiled at everyone in clinic, and was a very happy and playful baby. However, yesterday afternoon he started vomiting. This only lasted a few minutes...but then came the diarrhea. After several diaper changes Mary and I were quite upset and worried; it wouldn't be long before we'd have to go ahead and get him to the hospital before he got dehydrated.

But then before bed, he started eating again. He laid in bed for a while, and when I gave him his midnight meds, he had a dirty diaper, but ate just fine. No more vomiting. Because he still looked pretty good, and his eyes didn't have that sunken look, we thought he'd bested whatever had him in fits. But he was very uncomfortable after midnight last night, so Mary and I stayed up with him in shifts. Still no fever, but he was gradually getting worse. Though he was eating (a lot), apparently he was pooping more. So, at 8 this morning, we knew we'd have to take him in. Mary decided she would go and I would stay home with Emily.

In the time it took Mary to get from our house to Nashville, Gage had gone from a little dehydrated to severely ill. She was so concerned for him that she turned on her flashers and honked her way through every red light on the way to the hospital. Slamming the car in park in front of the Emergency Room doors, she gets out and lifts Gage from the car. He was blue, unresponsive, and not breathing. The doctors performed CPR on him and were able to get him stabilized, and he is now in the PICU.

Because he did have a "cardiac event", he is being kept chilled...between 32 and 34 degrees Celsius (normal body temperature is 37) for 24 hours. During the next 72 hours, we hope to learn what (if any) damage his organs sustained from being without oxygen. His doctors are a bit puzzled, and are searching for an infection as the source of this falling out.

For the time being, our little man is lying in a hospital bed on the 5th floor; tubes and wires connecting him to various pumps and machines. He is not breathing on his own, and is almost completely unresponsive. His eyes just move about in an uncoordinated manner, not really looking at or seeing anything in particular. It's hard to believe that this is the same little guy I was playing in the floor with yesterday. Instead of being excited at the prospect of going home this week, Mary and I are inundated with worry and anxiety; will he even have the chance to recover from whatever this episode was?

Frustrated...and Excited!

2009-06-23T14:20:00.000-07:00

Ok...so what would good news be without bad news? I know we would welcome it, but I'm afraid it doesn't happen that way.

The bad news: after spending 7 hours at clinic today for a 4 hour infusion, we are a bit wore out and frustrated. Frustrated because it took an hour for the nurse to even come in and get Gage's blood. Frustrated because they have known for a week that he would get his second dose of Rituximab today...and we had to wait an additional hour and a half for it to get there. Frustrated because...and this is the big one...they didn't put Gage's blood for the enzyme test in the right tube. So, the test we waited for and hoped we'd even be able to take...the test we've waited on pins and needles for over the past 2 and a half weeks...yeah, it's no good. It's a do-over.

And you wanna know what gripes me the most? I took Gage in for that test. The nurses talked about which tube his blood would go in for 35 minutes. And still got it wrong.

Now for the good news. After waiting patiently (well...maybe not exactly patiently) I asked our doctor today when we could go home. He said that he needs to talk to our pediatrician and feel comfortable that he has a set of eyes and ears in Huntsville for the little things...coughs, snotty noses, etc. If Gage's counts are stable on Friday, and next Tuesday, we get to go home!

100 days

2009-06-22T17:42:00.000-07:00

It has officially been 100 days since Gage's transplant....Go GAGE!!! This week, we are nervously awaiting the enzyme test. We are very optimistic that he has it, but terrified that he doesn't. What if this didn't work? What options would we have to save his life? Hopefully we will get a big "YES" this week. I hope that people understand that just because he is 100 days post transplant and doing good except for this setback, that doesn't mean that he is somehow all better and that this is over. This is nowhere near over. Every day with Gage is a special day because he is here with us, smiling and staring at you with his big blue eyes. Of course every day with every child is special, but most children don't have something that only 3 people have survived. Charlie and I truly cannot express our exhaustion. It has overtaken us. Our minds, bodies, souls, hearts, everything.......exhausted. Of course we keep pushing on for our sweet boy! His blood counts have been better and he will receive his second round of the chemo drug to kill the antibody tomorrow. He will get 2 more rounds after the one tomorrow. So we will be done with this medicine in 3 weeks. I am hoping we can come home after that. And start our once a week trip to Vandy instead of living there. I am so frustrated because there is nobody I can discuss his disease with. There is no literature out there. It's just the same old stupid article on all the websites. There is one informative article. I wish I could find the other 2 survivors that are in the United States. I would love to SEE proof that there are children LIVING with this disease. Please send positive thoughts our way this week as we await another test result that can radically change our lives. Mary

Setback...

2009-06-15T09:05:00.000-07:00

When the doctor came in this morning, we found out that Gage has developed an antibody that is actually attacking his blood cells. While this is far from common, they have seen it before. The treatment is a drug that attaches itself to the antibodies and destroys them before they can do more damage to his blood.

While we're happy to have his recent dependency on blood explained, unfortunately it means another couple weeks in the hospital. As you might imagine, Mary and I are pretty far from excited about the prospect of being at the hospital for even another night. But, I guess we'll pull through and do what we have to do to get the little guy better.

Another weekend at Vanderbilt

2009-06-15T07:22:00.001-07:00

Gage and I (mary) have spend the last day and night admitted back to Vanderbilt. His hemoglobin on Sunday was 3.9. That is so low it's ridiculous. So he ended up getting 3 units of blood (so far), but he will probably need more. He also needs fluids. His bilirubin is creeping back up. Hopefully the new medicine will kick in this week and stop all this nonsense. I got an hour of sleep last night. And 2 the night before. So when Charlie gets here, I am headed to the RM house to sleep and wait for Emily to get back from my mom's house. I miss my girl!

Ups and Downs

2009-06-13T14:45:00.000-07:00

Ok, a lot happened this week. Some good and some not as good. First, let me start with the good. Gage is 95% DONOR!!!!! And his blood type has already switched over to the donor's type, isn't that cool? The Dr's were thrilled with the news and we were SO relieved! On another note, as you know, Gage's platelets have been dropping rapidly. Well, after last weekend, his red blood cells have started dropping too. It was a mystery for most of this week. He had to get blood 3 times, which is so weird because he had gone a month without it. Dr. F believes he knows the answer to the mystery. After his liver and kidney functions started to be elevated this week along with the blood just literally disappearing, Dr. F is pretty sure that Gage's big anti graft verses host medicine has basically "turned" on him and is causing all of these things to happen. Apparently, it's not uncommon for cyclosporine to do this after a few months. The solution is to change our "big gun" medicine to Prograf. Sounds great, right? It is...with a catch. Because it is a new medicine and they have to check the doses regularly to make sure Gage is not getting too much or too little, we have to get his level checked on Sunday morning at 9 am. And he will most likely have to get blood again since his Prograf may have not had the chance to repair the damage. So there goes another weekend. And we will have to extend our stay in Nashville for a few more weeks while we work the kinks out of our most recent crisis. Of course, it's all worth it for baby Gage's sake, but I cannot begin to describe our exhaustion!

So it's been a while...

2009-06-11T06:36:00.000-07:00

You'd think as we neared (what we hope is) the end of this adventure, things would calm down and get easier. In reality, nothing could be further from the truth. With Mary and my nerves worn down, even the simplest tasks seem daunting. Gage's progress has been nothing short of astounding, but it seems like we have such a long way. There's still the business of GVHD and keeping his new immune system in check...while letting it try to come up and protect the little guy. And we're still waiting on the big enzyme test that will tell us if he has the activity he was lacking when all this started. So, you'll have to forgive me if I haven't posted pics in a while.

A lot has changed since his last pics were posted. He lost all of his hair and has since started growing it back. He's eating much better. He's getting really good with his hands. He's so close to sitting on his own. All things that are very encouraging. So, without further ado, on to the pics...

He still had hair here...

And here, not so much.

Emily and I on the dragon at the park across the street.

Here's Gage and his big belly.

Gage at the zoo. (The RMH gave us some free passes to the zoo, so we went several weeks ago when it wasn't so hot.)

Gage and Emily laying on the floor at home. The weekends home are great, but they just make us want to stay home even more...

Gage's hair has been coming back in the past 2 1/2 weeks; you can see some of it here.

Me and the two hellions. I'm pretty sure 0.005 seconds before this picture was taken there was screaming, flailing, yelling, tears, and all manner of unusual and unpleasant things...

Here you can really see Gage's new hair.

Gage and Emily sharing a rare quiet moment.

Back at RM house

2009-06-08T17:28:00.001-07:00

Emily and I came up from Alabama this morning, picked up our guys from the hospital and came back to the RM house. Gage is looking so much better and he ate great today! He is still having some diarrhea, but not as bad. So far, his cultures haven't shown anything, so they are still thinking he has/had a virus. We will find out more tomorrow in clinic. We are supposed to see the liver doctor tomorrow too. Hopefully she will actually come this time. More good news....the lady we moved rooms for has a service dog...that barks...and barks...and barks. So now we have a small room that came with ants, a sick baby, a grouchy toddler and a neighbor with a dog that barks. But i am truly grateful that we are all back together in the same place. There is a family here whose son is waiting for a heart. Another family finds out this week if the chemo/radiation got rid of their 4 year old's brain tumor. Another family here has a 15 year old son with brain cancer. One lady just lost one of her twins a mere 3 weeks ago. She has to be strong for her little boy and the other twin. Another lady had lost 2 of her triplets and I am honestly not sure what happened with the other baby. But she isn't here anymore, which doesn't allow me much hope. There is so much hurt here in the RM house. Every single person has a story that will break your heart. I will selfishly be glad to be home...away from all the hurt. But it does help to be with others who truly know how you feel and don't give you a bunch of cliches. It's easy to make friends here, everyone loves to talk about their children! There are hugs and tears. There are good days and bad days. You just have to take advantage of the good ones!!! Mary

Keeping them overnight

2009-06-07T10:57:00.000-07:00

Because the blood cultures won't be back til tomorrow, they have decided to keep Gage overnight again just to be safe. If he has a virus, he will need more antibiotics. THey are also giving him blood because after the massive samples they took on friday for the big tests and all the bloodwork they took in the ER, he was pretty drained. So basically, we are on hold. The good news is, he still hasn't had any fevers since last night and he is happy and playing again. Yesterday it scared me because of how distant he was. So Charlie will stay the night again, Mike will drive my car back today and Emily and I will head back tomorrow. I will keep you updated!

Gage is in the hospital

2009-06-07T09:33:00.000-07:00

So we came home on friday afternoon after all the tests and all was well. Saturday morning, Gage was happy and playing. About 11:30, he started throwing up. He continued for a few hours until all that was left was bile. He was very lethargic so we let him sleep for a while. Later in the afternoon, he just wasn't acting like himself. Then he started having a fever that continued to rise. Suddenly, he had diarrhea. So off to Vanderbilt ER went Charlie, Gage and Mike (Charlie's stepdad). They drew cultures to see if has a virus or infection, but those take 48 hours. His initial bloodwork showed his hemoglobin and platelets were even lower than before. He was also deydrated, so they were giving him fluids. Gage's fever is now down and he is acting more like himself. So we will see what today brings. I am super nervous as to what could be going on. I was completley brokenhearted yesterday when Charlie left with Gage. It felt like the time he took him to the Vandy ER right before the transplant when I honestly didn't think Gage would come back. Hopefully we will know something soon and we can get our boy feeling better.

So....

2009-06-05T19:17:00.000-07:00

So the tests are all done and we are back home for the weekend. Now...we wait. The donor/recipient percentage should take about a week while the enzyme test takes 2-3 weeks. Haven't we been on pins and needles long enough?! His platelets are dropping at a scary pace. They are down to 34. The Dr. believes it could be the beginning of graft verses host, so we shall see what happens. If it is GVHD, we will first try to solve the problem by upping his doses of anti-gvhd meds. Hopefully this will fix things. So far, all of his other counts remain great. Emily has a cold and feels terrible. Between worrying about theses tests, worrying about Gage gagging on the milk from his stupid feeding pump, Emily having nightmares and coughing and sneezing, I got approximatley one hour of sleep last night. But somehow, I am not tired. Adrenaline can do weird things to you. We are working on a solution to get more calories into Gage and we may see a specialist next week to help him learn to eat his baby food better. Apparently, this problem with him almost refusing to eat baby food is common in babies who have been through so much. So, wish us luck that all of these things will come together and that those tests will have wonderful results! Thanks for the continued well wishes, we truly love reading them!!!! Mary p.s. we WILL post pics soon!!!!!!

frustrated

2009-06-03T14:44:00.000-07:00

As if we didn't have enough stress in our lives, the RM house told us yesterday they needed our suite because apparently it is handicap accessible (I don't see how) and there is a lady in a wheelchair coming next week. So they moved us into a smaller suite. Our tiny box we live in is now more like a matchbox. They tell you to get comfortable and make yourself at home so we had 2 months worth of stuff here that we had to move into a smaller room. Gage is not gaining any weight at all, he is the weight of a 4 month old instead of a 8 month old so they brought us a feeding pump to hook to his ng tube at night for continuous feeding so he will get more calories. Another thing to worry about. Another important thing to worry about is his platelets. They dropped 40 points last week and have stayed dropped this week. They don't have an explanation, so who knows. He is having extensive testing done on friday, which will hopefully reveal the answer to the platelet question. MOST importantly, he is having "THE" test on friday....to see if he has that ever important enzyme. There is no reason to think he doesn't have it, but I am completely terrified. Charlie and I are officially worn down. It took quite some time to get to this point, but we are frazzled. In the past 4 months, we have gotten about 4 scattered hours alone. Total. We are cramped up in a tiny room with a very active and bored 3 year old, if you can imagine. We are constantly worrying about Gage and trying to work with him to build up his strength. Someone is always crying. Sometimes, it's me. We are holding it together the best we can, hoping that we can go home soon. One long day a week to come up for clinic is totally worth it if the other 6 days in the week are "normal". Of course normal is not what it used to be, and won't be for a long time. But HOME makes a huge difference. Of course we are grateful for both of our children and the miracle that Gage is. People keep saying things like "it could be worse." Yes, it could always be worse, but that doesn't take away the stress that we have NOW.

Tuesday

2009-05-26T08:23:00.001-07:00

Sorry we haven't posted in a while. Things are going really good. We had another wonderful weekend at home. Gage is constipated something awful, but hopefully we will make some progress on that very soon. The Dr. today said we are at day 75 after transplant. In the next 2 weeks, we will do some testing, a echocardiogram, a chest xray, extensive bloodwork and that very important enzyme test. IF all of that is great, we may take out his central line and GO HOME!!!!!!! We would only have to come in once a week after that! So, we are hoping all of these tests turn out wonderful. We are so ready to go home and start living our lives again!!!!!

Home for the weekend

2009-05-22T16:47:00.000-07:00

We are home for another weekend of simply enjoying being home. Seriously, you have no idea how much you take being able to be at your own house for granted. Gage is still a happy baby, but he has started a new trend that is making us nervous. He is eating more of his bottle now, but when he burps it is SO tremendous that he gags and then throws up. Sometimes it is immediate and others it sneaks up on you. I really hope that is just a phase that will pass. The Dr. this morning didn't seem TOO concerned, but definitely wants us to keep up with it. Emily is wild as usual, running everywhere and jumping off of everything in sight. We got to go to the zoo on Tuesday (for free!) and it was a nice getaway. Gage is allowed to be outside, just not in the sun, so we kept him shaded in his stroller and he slept through most of it. Emily kept looking for the lemurs and got super excited when we finally found them. It was a nice way to celebrate our 8 year wedding anniversary! I am a little sad that we can't go to our friend's Memorial Day party because Gage can't be around that many people. We always have so much fun at their parties, but we will be content to stay at home and learn how to make sushi! Charlie is starting a new adventure by becoming our very own sushi chef! He made his first roll tonight and it was very delicious. I was busy taking some baby things to the consignment shop where I go alot. It was kind of sad getting rid of a few things, but our house is getting tinier by the minute!

Kayleigh

2009-05-12T15:16:00.001-07:00

My heart is completely broken for this family.

kayleighannefreeman.blogspot.com

The Freemans lost their precious daughter after a long 10 month battle. They never even got the chance to take her home from the hospital. I checked their blog daily and emailed her father a few times about Gage. This hurts so bad because she was so close to finally getting to go home after all the illnesses and surgeries. She went through so many things, and pulled through each time. I looked to her and her family for inspiration when we started this scary journey with Gage. I am sorrowful for her family and I have to admit this upsets me also in a selfish way. There was a point that I too though I would have to say goodbye to my sweet baby. The first time was when he was first in the hospital and nobody could figure out why he was so sick. The second time was when we sped home after the Dr. said it could be Wolman's, immediately looked it up and read in disbelief "this disease is fatal by age one." The third time was once we started the transplant. I knew it would either save him or kill him. There were many days that I secretly let myself think of what we would do if the worst happened. Charlie too has been following Kayleigh's story and when I got on the computer today and started crying, he knew. I told him that I not only hurt deeply for this mom and dad having to go home with an empty carseat to a beautiful nursery their girl never got to see, but that could have been us. I know that is such a selfish thought, but it could have been us going home emptyhanded. How are they even still standing up? They are such strong people and have coping abilities beyond my reach of understanding. If you want to know more about this wonderful family, check out their website. Also, they are going to be on an episode of "The Doctors" that they taped last month. I think it may air tomorrow. Kayleigh was such an inspiration to so many families. She was a fighter to the very end and blessfully, she went in peace. I am going to go for now and hug my babies tight. Mary

this and that

2009-05-07T15:14:00.001-07:00

After a good week, we are planning on going home again this weekend. Hopefully it won't rain so we can go out and enjoy Emily's swingset and bike. Gage's blood pressure was up a little earlier this week but has gone back down. His numbers are still great. He is almost bald now except for his thick BLACK eyebrows!!! He looks so cute because he went from awesome red hair to having only black eyebrows and eyelashes! Charlie and I are hoping to get, I dont' know, maybe FIVE whole minutes to ourselves this weekend. Since Gage was 5 weeks old and we knew something was wrong, we have been so tense and stressed out. Even when we are "relaxing" we are still running a million scenarios through our mind. Is Gage truly going to beat this thing? How bad is Emily being negatively affected by all of this? Will we ever be able to truly enjoy ourselves again without jumping at every singe noise Gage makes -automatically jumping to worse case scenario in our heads? Will Charlie and I ever be able to go out alone without feeling guilty for not spending every precious moment with our living breathing children?!?!?!?! Too many thoughts are running through our minds without ceasing...I literally wake up thinking, I can't get away from it. There is a cloud of worry that follows us that we cannot hide from. Having a sick child literally changes you in every way a person can be changed. We will never be exactly the same. We are weaker, yet stronger. Terrified but braver. Happy but reserved. Easily angered. Never again will we have the blissful ignornace of living our normal life assuming that bad things only happen to other people. Admit it, deep down we all think it. It's a terribly selfish, yet purely human assumption. Unforunately, we WERE the other people. But we also have an advantage that others don't. We have become a stronger couple with an even stronger bond than ever. We are able to express our raw emotions and fears to each other. We can honestly revel in each new thing our baby does and know that it wasn't guaranteed, we are blessed with a miracle baby that had a miracle team of doctors and nurses helping every step of the way. We will no longer live our lives with our eyes closed, letting each day blur into the next with no division. Each day is an extra day we have won the battle against Wolman's disease. We stole Gage away from it's selfish claws-we want him to ourselves thank you very much! I am sorry this post is all over the place. I am tired so my thoughts are random. I am going to pack for the weekend!!! Mary

Back

2009-05-04T17:12:00.001-07:00

We got back to the RM house last night after a relaxing weekend. (except for the whole ng tube thing). We are thinking that Gage is going to need blood tomorrow because he is a little pale and definitely more sleepy than usual. He has wanted to sleep the day away. We gave him a nice warm bath and brushed out a lot of loose hair. He is seriously going bald 2 months after chemo! We had some delicious food here today which we are always grateful for. Of course we eat in our room now and hole up more than usual due to this crazy swine flu so we don't get the socialization we got used to. Hopefully it will stop raining soon so we can at least get outside!

plans changed again!

2009-05-02T16:06:00.000-07:00

Well, at clinic yesterday, our doctor told us that since we had to be hermits and stay in our room at RM house, we might as well go home and be hermits there. So we have been home with TWO children for about 24 hours. It almost feels normal. Except Gage pulled his ng tube out this morning so we had to put a new one in and my father in law had to go buy a stethoscope so we could check placement. But other than that, it's been great. Especially with the news our doctor emailed us with today. It isn't often that the CHIEF TRANSPLANT SURGEON of Vanderbilt Hospital emails you :) The donor/recipient percentage FINALLY came back and it's 89%. Another true miracle! I cannot explain the way that Gage is progressing in every aspect. Since we came home, I can finally visualize us all coming home for good one day and falling into a normal routine again. We are happily readjusting to having two children. We really haven't gotten the opportunity until recently. It's great! So even though we can't go anywhere or see anyone, it is fantastic being home with the two little hellions!!!! Thank you so much for your continued thoughts and prayers. When Gage gets older, it will be wonderful to have all of these stories of all the wonderful people who cares about him so much!!!

Stuck in the middle with you

2009-04-30T08:33:00.000-07:00

Well, we are not going home this weekend thanks to Swine Flu. Don't panic...we don't have it. However, there are at least 2 cases so far within a mile of our house in Alabama so we are staying here in our room at RM House. To be honest, I really don't want to take Gage to clinic tomorrow, but I know I have to because it is very important to keep up with his counts in case he needs blood or platelets. But I will keep him covered in his stroller until we get into the infusion room. Luckily, they have a separate room they put us in because he is less than 100 days post transplant. I think today is day 49. Wow! And his hair is actually starting to fall out NOW, 60 days after chemo. He is doing great, loves to play and kick his legs and he is actually rolling all the way over now, a great accomplishment! I LOVE watching him catch up with his milestones and become a very active, happy baby!!! So while we are staying in this weekend, we will still have as much fun as we can playing with the kiddos!

Weekend pass

2009-04-28T16:25:00.001-07:00

The doctors continue to be impressed with how Gage is handling everything. His counts were great again today, which means he's making his own blood. This is a great improvement over what we were used to. In the hospital he got blood and platelets just about every other day. Now he's been almost two weeks without needing platelets, which is fantastic. Also, the donor/recipient test results should be back soon; we're anxious to see them.

Since he's doing so good, they decided to put us on a 2 day a week clinic schedule, which is great. But today, we got even better news: we get to go home for the weekend! We're very excited to have a somewhat normal weekend in our own home.

In other news, Emily has decided to completely stop listening...to everything. I'm sure she is stressed as well, but WOW. The change in her attitude is dramatic. She just will not listen to anything we have to say, and chooses to really save up her worst for anytime we're in public. So much for the terrible two's...

So, here are some pics of our little hellions...

Finally...some pics 8-)

2009-04-22T18:27:00.000-07:00

I think we're finally settling into a routine. While it's great to be out of the hospital, this place is strangely tiring. But having the whole family here is priceless. Mary and I don't get any time alone, but we're getting lots of quality time with both kids.
So, since it's been forever since we posted some pics...feast your eyes.
Feeding right before we left the hospital...

Chillin on the bed...

Chek owt mah shadez...

Together again...

Right before she went on TV (they did a live telecast from here last Saturday and Emily got to be on TV!)

Emily with Mr. McDonald. Like Santa, there are many lookalikes...buyer beware.

And you thought remembering to take birth control was hard...hehe...try this schedule.

Happy on the boppy...

lots o stuff........pics coming soon i promise!

2009-04-20T11:35:00.000-07:00

Our first nonmedical weekend went great. Emily is getting used to being here and has made some friends to play with in the play room. Gage is such a trooper! This morning's appt. went great. He has not had his white blood cell boost medicine for almost a week and his numbers are climbing back up. They went down a bit when they first took him off but now his little body is getting to work and making them on it's own! His belly is so soft now and no longer looks and feels like a hard football. It's still big of course, but being able to actually touch his belly without him crying is amazing. It was completely terrible when I would even kiss his belly and it could cause him pain. Now he ROLLS OVER ON HIS SIDE!!!!!!!!!!! So he's doing great physically and devleopmentally. I am so proud of him. I have to admit that there is a part of both Charlie and me who is reserved about being too excited. We both know the reality that this could still come tumbling down, BUT we are growing more hopeful by the day! We have wonderful supporters out there whose messages give us daily hope, so THANK YOU! Speaking of supporters, there was a telethon for the RM house this weekend and Ronald McDonald himself was here and Emily got her picture taken with him. Also, Emily and I were on TV if you can believe it. We were on the news with the newscasters promoting the telethon! So all in all things are going well!

Friday

2009-04-17T15:04:00.001-07:00

I am sorry I have cut and pasted the last two entries from our caringbridge site. We will do better next week. Also, new pics soon!!!!!

We are still doing great! Gage has adjusted well to his new home. We go in every day in the morning for blood work and see if he needs platelets or blood. If he doesn't need anything, we come back and start out day. If he does, we stay at the cilnic for a few hours. Gage is currently taking about 10 medicines, 3 times a day, but we have been told that even though it sounds like a lot, it really isn't. There are his two biggies, the anti rejection drugs, his medicine to help his liver out, his med to help his adrenal glands out, i can go on and on, but he is really progressing. His counts have been good and he only needed platelets once this week! The medical team just cannot get over how well this child is doing and how much better he is than when we started. OH!!!! Emily is here! This is absolutely wonderful to have them both here. I think she will be really good for him developmental wise. He was already kicking his legs a lot more than usual when he was watching her play. He is a couple of months behind, but who can blame him! He will catch up though and truly I am much more concerned about the fact that he is alive and thriving!!!! We are hoping that a suite will open up next week so we can have our own kitchen and living room. Having Emily here is priceless but now we are even more crowded. Not complaining though!!!!!!!!!!!!

RM house

2009-04-15T14:21:00.001-07:00

We are officially settled in at the RM house. I may not update every day because we cannot access the internet from our room so we have to go to a common area, and of course Gage cannot be in a common area when there are people....you get the picture :) He has gone in yesterday and today to clinic and his numbers are still looking good. I think he is enjoying his new home and we are getting used to being here too. We may be bringing Emily up this weekend. Can you imagine...both of my children in the same place at the same time!!!!!!! Gage will probably have to get platelets tomorrow. Today they gave him a vaccine against pnuemonia. The RM house is pretty nice, there is lots of free food so we are well taken care of in that department. There are lots of free washers and dryers to use so I can actually clean all of our clothes at the same time! Gage is snoozing right now and we are just waiting to see what's for dinner. I will update as soon as I can, Mary

Is today the day?!?!?!?!?!?

2009-04-13T05:48:00.001-07:00

Good morning, this is hopefully our last morning waking up here at the hospital. Sure, we will be spending a great majority of our days here in clinic, but we won't start the day out here. I am hoping there is no hangups today, I have been working hard to get our new room all ready for us. Gage is eating more by the bottle every day with fewer supplements in his tube. His hernia isn't as bad. When he is physically capable for surgery, it will have to be repaired, but I am still hoping it will just calm down until that time. We will be having a busy next few days. If you don't hear anything else from us today, you can safely assume that we are making the transition. There is limited internet access over there (no wifi!) but I will write tomorrow and let you know what is happening. Please pray that this goes smoothly and we have a VERY uneventful first night away from the hospital! Mary

"Good Friday"

2009-04-10T11:23:00.000-07:00

More good news! The social worker came in a little while ago and told us we DO have a room at the RM house! It's not a suite, so we are still on the waiting list for that, but he have a place to go on Monday besides an expensive hotel. Speaking of expensive, I picked up all of his medicines today from the pharmacy so the nurse could explain everything to me....OUCH! I won't give details but just imagine 9 medicines that are not generic and are very powerful. Yeah, I had some sticker shock! But that's OK!!! Thanks to all of our wonderful, generous friends, we won't have to worry about how to pay for all of this!!!! I am going over later to sign in at the RM house! Our biggest concern right now is still his hernia. It is acting up and allowing fluid to go into his scrotum, which is not good. Other than that, Gage is having a great day!