Thursday, March 31, 2011

Day 48: Insert Clever Title Here

Here we sit. It is almost 6pm Milan time (when I start this post) and we are in our seats awaiting our dinner for the night. Giovanni is eating his appetizer that I gave him from my cabinet of food. He is doing great. He looks like he should be outside running around in the beautiful spring sun with his brother and sisters. I hardly think he could handle such excitement and fun right now.

As of today, his Neutrophils are still at 300. His hemoglobin is great...maintaining on its own. After my last post on Sunday about them saying the counts were not reliable so we would wait until Monday they reported his platelets as 8,000 on Monday. I could NOT believe that number. They were 99,000 two days prior and went up to 99,000 on their own from 88,000. I swear it had to be an error. He ended up getting a platelet transfusion obviously and the next day his platelets were 164,000. They now sit at 128,000. I just don't know what else to say about the counts. I am honestly sick of them, ha. I am to the point I don't even want them to tell me what they are since they really don't tell us when he will be leaving. Maybe I will tell them I just want to know every few days and hopefully after a few days it will be good news. I hate how each day hangs on having them come in and tell me the counts. Giovanni is really doing awesome and they seem surprised that he has done so well since it was not the same for the first child or the other one here now. Not a single infection or anything despite being neutropenic this long. I of course insist it is because he is breastfed still but know there are likely multiple factors contributing to his strong, healthy little self.

The weather here has been beautiful which is a welcome relief from the rainy, dreary days. I love the time I have home with the kids. Right now, I am here for about 40 hours straight and then I go home for about 8 hours to be with Aria, Miles, Liviana and Brad while Tarah comes up to the hospital. I really get my energy back during those visits that allows me to face the hospital again. Not that Giovanni isn't a total delight to be with while I am here...he really puts smile after smile on my face...but the hospital itself...does not. When I am boarding the trains to head back to the hospital I feel myself getting more and more anxious, breathing faster and feeling stressed. Giovanni helps put my mind at ease and Tarah and I spend a while chatting and catching up when I return...and that all helps the anxiety.

Yesterday I took Liviana outside on the balcony for some sun. I sang songs to her and took her clothes off and let her soak up some the rays. She was SO cute. She laid back on the pillow I had behind her and closed her eyes with a big smile on her face like she was unbathing in her diaper on the balcony. Such a precious girl. Her cheeks started to get all rosy from the sun so we went back in but I think we have plans for some sunbathing again in the future. She really seemed to love it.

Aria and Miles decided to switch beds. They started out sleeping together in a queen sized bed but they ended up having issues like, "stop taking my blanket, stop touching me", etc so we switched Aria to Tarah's bed and Miles to the cot like bed. That seemed to be working great. Miles was sleeping much better by himself. Then, Aria said that her bed was too hard...and I am going to be honest, when I laid on it, it is. She said she can't sleep on the hard bed because it gives her bad dreams. That launched into a cute conversation between her and Miles and his concern for her dreams but willingness to sleep on the hard bed because of the cool shelves around it. Aria was sure to move the calendar she marks days off of for when Giovanni comes home to her new bed too. They are so sweet...I am blessed to be their mother.

I asked the kids the other day who their best friends were. Miles said, "William from my class" (I am unsure if William is aware of his status as his best friend), Aria said, "My whole class" and Liviana said, "GeeeeMani" for her brother Giovanni. It was so cute! I think G would agree and I can already picture him trying to climb up on the couch to sit next to her.

I have been organizing all of the photos off my external drive when I am home. It has been impossible to find anything and when my computer crashed in September I lost my program I organized it all in so I had to start over. It has been like a blast from the past going through all of the images. I can view RAW image thumbnails in the software so even photos I have not processed are visible. The kids have all sat with me as we went through the photos, remembering times, smiling, laughing, oooing and awwwing. It was so wonderful but has also left me with so many thoughts, so much contemplation.

As I went through the images I saw Liviana playing in the yard, running in the sprinkler, bowling, climbing on chairs, playing in a pool..being a normal 2 year old. The photos were from May, June, July...even October. It is so bittersweet to look through them. It got me thinking...if someone would have told me in May, that we would be told, in 6 months that our daughter and son would be diagnosed with a fatal disease and there is nothing we could do would we have lived our lives differently during those 6 months? My first thought was that I would not have worked so much and at the very least, I would have figured out how to be a night owl again and process at night rather than the day when the kids were up. I would not have rushed to answer every e-mail and inquiry right away, I would not have been a slave to the my computer and my work. Don't get me wrong, I love my work, I love my clients but really...what is ever more important than your kids and your family, especially when you do not know how long they will be with you? I would have focused more on living in the moment and not worrying about a deadline, a blog post, getting a gallery uploaded. The moments with the kids should have always belonged to the kids and not my mind of a million tasks that needed to be done.

It is easy in hindsight to sit and think, coulda, shoulda, woulda. I ask each of you, what if you were told the same 6 months you will find out one of your children has an incurable, fatal disease. What would you do differently and why do we (me) have to wait to find something like that out before we make those changes? Why can't those changes be made now? If you thought of things in your mind, that you would do them now. Why wait until you realize that you have missed too many moments? Why not live every moment so you don't have to look back in hindsight? It all sounds ideal but in reality it is simple. It would have been simple for me to find ways to not do my work during the day so much, or create a better schedule, or alter my business plan so I wasn't doing so many sessions some weeks. It would have been so simple and then I would have had even more photos to look back on and smile, and reminisce and remember.

Giovanni is in bed, hopefully having sweet dreams of being home, playing with Aria, Miles and Liviana. I have been told that Aria and Miles are in bed at the flat and Brad is getting Liviana to bed as I type. Being together as a family is all that is on my mind. I am not going to worry about the counts going up or down or all around. I am just focusing on us all together.

That is all for now. I appreciate you all!

Hug Your Babies!


Matt, Jena, Joshua and Hoss said...

Still praying each and every day... I do hug my Joshua more and just let the phone ring and not care who it is. Your blog tells me reminds me I have more to life than emails and phone calls. I have a very special gift from God who is here now and won't be with me forever. I pray one day he will grow and love his babies as well. Your blog is hard to read but you remind all of us life is too short love strong now you have plenty of time for other things later!!! Made me smile to know you Livi is out in the sun:o) I know you dont' know me but I know your a wonderful mom and a strong woman!!! Keep your chin up!!

Jennifer Tenney said...

I pray for you every single day. I am the mom to a CDH survivor and have been following Liviana's story since my Dakota was born (She is 2 years and 3 months now). My heart aches for you and I think it is so amazing what you are doing for your family. I was telling my mom about you guys the other day and explaining how Liviana had CDH and now her current diesease and about how Giovanni is getting treatment in Italy. My mom pointed out how I often say that each day is more meaningful and I enjoy and appreciate each day more with my baby, because I have watched my baby fight for her life with CDH. My mom said maybe Liviana's CDH was a gift in a way to intensify the feelings of being appreciative for each day, even before you knew about her current diesease. It is not enough, but I pray for a miracle for your little girl each day!
Mom to Dakota 12-25-2008
RCDH survivor

Anonymous said...

I continue to pray for you when I can. I pray the count continue to be as they should be. Brad thought, on fb, G might be getting out pretty soon. I joke that Brad, Tarah and your other children will have to make a lot of noise for you and G to sleep at your flat, after being in the hospital so long! Oh it will be such a relief to all be under the same roof to sleep and play together! I hope it is soon! Priscilla