Ciao! First, our sweet Giovanni turned 1 on the 16th and Liviana turned 3 on the 18th. It is ironic to me that their birthdays are so close together. I always invisioned them being two peas in a pod as they grew up, as Miles and Aria are. I still see that in my mind and it makes me smile. I was reflecting on both of their births in the last couple of days. Liviana of course, was an experience shrouded in fear as the NICU team awaited her arrival because of her Diaphragmatic Hernia. She was so beautiful and delicate with eyelashes a mile long. Her strength at birth is seen in her today. I can't believe all she fought through and all she has to fight through now. Giovanni's birth was peaceful, gentle and just how we imagined for him. He was born, at home, into his daddy's hands. A natural, normal birth with out all of the medical intervention where it was not necesasry. How ironic with all of the natural living I have strived to provide for my kids we are here now, getting ready to put our sweet boy through this experience to save his life. While I live a life of natural approaches and beliefs I certainly, as show with Livana and Giovanni, recognize where medical expertise and knowledge is necessary and I am forever grateful to have it when I can do nothing to save my children from their fate. Happy Birthday to our beautiful babies. You both give us such joy in our lives.
Giovanni has had a few other assessments since my last post including another neurological assessment, physical therapy assessment and a chest x-ray and an EKG. He passed all with flying colors. They spent a good amount of time on his feet again (trying to make me a nervous wreck) but said again he is fine. I almost think they are surprised he is so strong, healthy and normal at 12 months with an infantile onset MLD.
They did an assessment on Liviana for Physical Therapy too and they it was really detailed and promises to be a huge benefit for her. They are going to get her into an orthotics technician to see about getting her some braces for her lower legs, feet to help her stand. They said if the cost is not too much they can cover it but if it is too much we will have to. They only have a certain amount alloted for the care of the affected sibling so let's hope that the braces are within their budget. They also have a walker for her that she LOVED. She tried a couple of walkers in Omaha and she cried and screamed through most of the experience. She had the biggest smile on her face while trying the walker here and did a really great job. We hope to bring it to our hotel with us in the next couple of days so she can try to get around more here. It is kind of crazy but she is doing GREAT since we got here. Dare I say...better. She is much more physically active and seems more mentally sharp. She is getting on and off of the "couch" (it is really a cot that is in the main living area so it is a nice height for her) and she will just stand next to it for a while or sit down, pull herself back up, etc. Brad and I have both forced ourselves to not run over and help her and pick her up. The exercises and movement is good for her. Last night, at midnight Brad and I were sitting out in the living space talking, and suddenly, Liviana comes around the corner crawling. She got off of the bed in the bedroom, crawled out of the room and all the way down a hallway without making a peep. She truly, truly amazes me with her strength and determination. She could have given up, she could easily say, "I can't do it", "it hurts" but instead she tries and tries and tries. I can just imagine her little mind thinking that she wanted to be out here with us and was going to manage it any way she could. She is a true inspriation....I am in awe of her.
Giovanni has a nasty cough...again. All of the kids ended up with it after we arrived. They have me doing saline treatments on him and a saline nebulizer to help clear him up. He needs to be strong and healthy when he goes in to surgery for his central line on the 27th. We will check him into the hospital on the 26th and the surgery will be the 27th. He is a walking machine now. He resembles frankenstein a little because he sticks his arms straight out often and lacks some grace but he is definitely on the go and loving it.
I have found myself feeling very very anxious and tense today. It is likely a combination of Giovanni's upcoming surgery and the realization of all to come after that, a little home sickness, a little stir crazy. I am hoping tomorrow (an appointment free day) brings me some relaxation and peace with all that is in my mind right now.
It is very foggy here in the evenings and mornings...VERY foggy. I am assuming, with my meterologically challenged mind that it has to do with the temps and the proximity to the Alps. It feels oddly peaceful walking in the fog at night. The area around our hotel is usually bustling with activity. We took Aria and Miles to the market tonight for groceries and, since the sun goes down early here, it was aleady dark and foggy on the walk home. It is surreal that we are here but I have to tell you I would give up being in the beautiful Milan, Italy in a heart beat if it meant my babies were healthy.
Aria and Miles are doing great. They like the area we are in because it means running around and saying, "Bonjourno" and seeing people walking dogs and going into little pastry shops. Tarah is working with Aria on he school activities and that keeps everyone busy. Aria mentions home a lot and I can't help but feel bad about taking her away from her friends and school. I know though that she loves her brother SO so much and could not imagine not doing what we are doing in the hopes of saving him. She says to me, literally 5-10 times a day, "Isn't Giovanni just the cutest!" I am worried about how hard it will be on her when he is in the hosptial for 6 weeks. They will not be able to go see him until his counts are up enough after chemo...prior to that it will have to be through glass. I think that will be hard on her but we will make sure to keep everyone in contact any way we can.
I have taken photos since we have been here and I have a laptop to use which is a wonderful lifesaver but It cannot handle my photo size, type, programs etc. We had our desktop all boxed up and ready to take with us and then....we went and left it sitting in the office. I was going to have it here at the hotel room and so I could do photo work while here and use the laptop while we are in the hospital. I am not sure how much it would take to send UPS or FedEx but will probably have to find out soon. I took some super cute photos of Giovanni sitting in the sink after his bath that I am dying to process. I have seen many little streets for photos of the kids too. I PROMISE photos soon.
I can't thank Jennifer Hendrickson enough for all she is doing for us back in Omaha. She is getting our mail, managing our bills and doing all she can for us on the homefront. If you know her, you know she is an angel. If you do not know her, you would be as blessed as us to have her in your life. Thank you from the bottom of our hearts Jennifer.
I can't believe how long this post got. I will leave you with a few of my Americano observations from Italy. Heated towel bars...really something that should have caught on as standard in America. How could you possibly go wrong with a warm towel when you get out of the shower. Eggs....not refrigerated in Italian stores. This doesn't bother me as they seem to be fresh and local which makes me happier than not fresh and trucked from half way across the country, store bought eggs. Push doors, not pull. I am not sure why we had to do this differently in America, as the push is starting to make more sense to me. No High Fructose Corn Syrup makes for happy mamma and a skinnier population :).
That is all for now. I am trying to figure out somewhere we can take the kids for a great experience this weekend before Giovanni begins things next week. Lots to choose from around here.
Thank you all of the continued support. We could not get through all of this without you.
Hug Your Babies!
Coughing and Tests
2 weeks ago