Breathe In...Breathe Out

That is my new mantra. Breathe in, Breathe out. If I stopped breathing everytime I got too stressed or concerned I would not be doing too well right now.

Giovanni is "home" from the hospital. You all would have been subjected to my constant ramblings while we were there but the hospital building we were in did not have Wi-Fi (I am hoping that the new building for the 6 week stay will). There were some bumpy moments and interesting times navigating a foreign hospital system and mostly unknown language but Giovanni is doing great and hopefully can enjoy the next 17 days before he begins his 45 day difficult hospital stay.

This surgery was to have a central line placed for Giovanni as well as one round of bone marrow cell collection. The central line that we decided to use for Giovanni is superficial and a box that is placed under the skin so there is no risk of him pulling it out since it will be in for so long.

We went to the hospital Wednesday afternoon so he could have another blood draw (10 vials!) and Brad, Aria, Miles and I could also have blood draws so a complete family gene sequencing could be done. Brad and I both did draws for this in Omaha but as of last week that blood had not yet arrived here. We were both worried about how Aria and Miles would do since neither have had blood draws before. They did awesome and despite us trying to distract both of them from paying attention during the process they both wanted to watch. I swear Aria will go into the medical field when she is older. Giovanni was admitted to the hospital a few hours later. That is when the interesting part started.

It is an eye opener to realize how essentially, spoiled we are as American's. I want to preface this by saying the doctors and nurses are WONDERFUL. We feel in very good hands when it comes to medical knowledge and expertise. They are brilliant doctors and warm, kind people that makes the process easier. I am a very involved person when it comes to medical decisions and processes and you certainly know I have strong trust in this team when there is a language barrier involved and I can't know every little thing that is being said. All of that said, it is a very different experience in the hospital here than at home. The first thing I noticed is that there was no soap in the bathroom. I don't mean, shower soap or extra soap, I mean NONE. There wasn't even a dispenser on the wall. There also were not any towels so when Giovanni had a Betadine bath prior to surgery all we had to wrap him in was a clean sheet that hadn't been put on the bed yet (you have to change the bedding yourself too). You have to pay for television...5 Euro a day to start. A guy came around shortly after we checked in with a machine to turn on the TV and take money for the viewing. I said I would do just the one day so I could check to see if it had any American channels like our hotel does and he said I could not do that, I had to do at least the 3 day @ 10 Euro. Of course...no American channels so I put it on MTV for music since they actually play music videos on their MTV. I think the most obvious difference was the noise level. We were on the Pediatric floor and most the kids on the floor were not "sick" with an infection or illness but rather diabetes or other diseases being managed by medical staff. So, they were not laid up in bed but rather running the halls, screaming, playing, basically sounded like they were having a party. It wasn't just in the middle of the day though but this "party" went on until 10:15ish at night and after that there were still random outburst of noise in the halls. We had a roomie (who were the nicest people despite our complete language barrier) but they were clearly night owls who did not turn out the light and TV until 11:45pm. The TV was shared but mostly on our side. The lights lit up the entire room so when their light was on it was like our lights were on. I am SO glad that Giovanni passed out at 7:30 the first night and I didn't have any issues with him waking up and not going back to sleep given the bright room and noisy surroundings. Our roomies had some guests arrive at 10pm and stay for about half an hour. There were no whispers or quiet vists as they saw the sleeping baby and mother next to them...it was all very odd to me. As I laid there staring at Giovanni sleeping I was willing him to please stay asleep and screaming, "Be quiet, turn off the lights, go to bed" in my head. It really felt like a twilight zone given the time of night and the fact that we were in a hospital, not a camp. Finally, at 11:45 they turned off the lights and TV and I was able to go to sleep along side Giovanni.

The next morning G was not able to have any food after 8pm and no drink after noon. I figured that breakfast would come in the morning sometime but quickly realized that they didn't serve breakfast when the cart, that pulled up the night before in the hallway calling for people to come get their food didn't arrive. At about 7:15 I headed out with Giovanni to the shops below the hospital hoping to get him something to eat at the supermarket....it was still closed. A cafe/pastry shop had to do and I got him an apple struedal.

Surgery was scheduled for 2pm. They came up to get him and I was able to carry him downstairs to the surgery room with Dr. Biffi and Dr. Larioli (Allesandra and Laura). He was really, really ready for a nap so the timing was good. He knows Laura from seeing her all the time and he let me hand him off without any fussing. It was hard to do for me, nonetheless. Allesandra and I stood, waiting for the elevator. She is pregnant, due at the end of April so she could not be in the room for the line placement since x-ray is used. She is the lead doctor for Giovanni's treatment. She saw I was emotional and told me he would be fine and that it was not too invasive (was not supposed to be at least). I told her it was just hard since he is "healthy" right now and it marks the beginning of this process. She said she knew it was difficult and that it shows we have a lot of trust in molecular biology and science since he isn't showing symptoms yet but we know he has MLD and needs treatment. We got on the elevator and had probably gone down 1 floor when her phone rang. There was an emergency in surgery and they needed the room so they would have to postpone and we would have to go down and get Giovanni. I was happy and relieved yet anxious to have to postpone this process more. When the elevator door opened Laura was standing there holding Giovanni, still dressed in full scrubs, Giovanni laying on her chest comfortably. It helps the process that he comfortable with the them. We headed back upstairs and waited an hour for them to come back for him. This time there were no delays. We were told that it would be about 2 hours. We waited in the room and then decided to run downstairs to the market and a book for me to read since I was without internet. The book store (Librerie) has a tiny shelf of "In original language" books so I picked up a Joyce Carol Oates book to pass the time. The 2 hours quickly turned to 2.5 hours and then into 3 hours. I was very anxious and began pacing the noisy Pediatric halls. Three of our doctors came in to let us know that they did have some issues placing his line because of how small he is and the vein was and they were able to get that done and move onto the cell collection. They were very reassuring though that he was fine. Deeeeep breathing! They said it would be another hour or so. We waited more and an hour passed. I was pacing the halls again about an hour and half later when I saw a large team of our doctors and nurses from the surgery coming down the hall carrying Giovanni. Neither Brad or I were prepared for how he looked. He normally weighs about 24 pounds and he probably was about 40lbs. He looked like a little Michelin man. Allesandra explained to me that they needed to make "surgical room" since the vein and area was so small. My poor baby. He lost a fair amount of blood and his red blood cell count was low so he would receive a red blood cell transfusion as well as be on some pain medication that would wean over the next 24 hours. As they brought him in the room Allesandra was telling them to let me nurse him. He whimpered in a horrible, raspy, deep sound and cried. They handed him to me as they got all of the lines situated and got him hooked up to the oxygen monitor. He was anxious to nurse but seemed to be in so much pain from the intubation. I could not believe how big he was in my arms. His eyes were just little slits. It was like he had been in a prize fight and he didn't win the battle. I could see on Brad's face that he too was taken aback by how he looked. He stepped out of the room while they got everything situated. Allesandra explained everything he was receiving and that the pain medication would be weaned overnight into the next afternoon. Brad returned, the doctors and nurses left and Brad helped me get situated holidng our sweet, jumbo baby on the bed. He fell asleep comfortably laying on my chest. Brad headed home to check on the kids and help get Liviana to bed. The monitors for the blood he was receiving kept beeping. The people who shared a room with us were very concerned about Giovanni. They were really sweet, wonderful people. I could not reach the button to call the nurses so the father of G's roomie went out in the hall to get a nurse. She came in, looked at the machine and the lines and hit the buttom and left. 2 Minutes later it beeped again so the father went out again to get someone. When the doctor on call came in she said, "Mama, you need to push the button to call the nurses when it beeps". I said, "I can't reach the button and I am not going to get up with him in this condition every 2 minutes". She stretched the button over to me and the father told his daughter and wife to help me if I could not get to it when the machines beeped. It continued this way for an hour or so. Nurses in and out of the room, looking at the lines, hitting the silent and heading back out. Finally, a nurse came in and felt around on his IV location and left to get another nurse. They determined that his IV was partially out and that he needed a new one placed. That was really not what he wanted to deal with right now. Off to the room we went for a new IV...poor little guy. His cry was pathetic with his sore throat. They first checked the other arm which is the one he had 10 vials taken from the day before...that vein was no good. They ended up using the back of the hand on the same arm as previous. It was a long process and as I stood there over the table, hugging, kissing and telling him it was okay I really was not feeling well. It is ridiculously HOT in buildings. They have the heat cranked up like it is 20 below zero outside. I had felt like I was starting to get the congestion the kids have had for a couple of weeks and that night, after all of the exhaustion and stress I was starting to feel a bit worse than just a cold. They finished up the process and I carried Giovanni back to the room, nursed him and got him settled in bed. Our roomy was till up and I tried to rest next to Giovanni but I am one who doesn't like to sleep with any light on in a room so a room with full light on really isn't conducive to my sleeping, neither is beeping machines and regular nursing activity. I was really not feeling well at his point and was having regular hot flashes. It felt insanely hot in the room to me. It was now 11:45 and Giovanni woke up crying. I heard the mother next to say something to the girl, who was up drawing and the TV was on. I think she must have told her to go to bed because she got up and turned off the main light and TV and got in bed. The other light, that shined straight onto Giovanni in bed was still on. I think they had a hard time figuring out where the switch was since it was partially on our side. I laid there for a couple of minutes yelling, "turn off the LIGHT" in my head. It doesnt' seem to work well. I heard book pages turning and at this point decided since it was midnight that I wasn't going to be so accomdating anymore so I got up and turned off the light. It was time for her to go to bed in my opinion :). After getting up to turn the light off I laid down at the bottom of the bed feeling really sick at this point. I was shaking, hot, my stomach felt quivery and my head was pounding. This was...not...good. I laid the for a while and texted Brad letting him know that I was pretty sick and worried that I would not be able to take care of Giovanni well enough if he needed to be carried anywhere (if an IV issue came up again, etc). I was so stressed and concerned that I was not in a condition to take the best care of him at a time when he needed me the most. I also knew I needed to be there because he needed to nurse during the night. I went into the bathroom and called Brad and then laid back down on the foot of the bed. I really felt like crying. Now was not the time for me to be sick. It was obvious that I had a fever at this point. Brad showed up about 20 minutes later. He felt my head and I could sense his anxiety about the situation for me and for Giovanni. He went out to the nurses and doctors and came back with two pills they gave him for me. Now THAT would not happen in an American hospital....I am not complaining. They were unidentifiable pills and I am usually not one to take random pills handed out but as my mom said when I told her, "you must have been feeling pretty bad to take those without knowing what they were". Whatever they were my headache was gone in about 1/2 an hour and I finally felt a normal temperature come over me. In the meantime the doctor on duty and teh nurse came back in and began talking to Brad. He went out in the hall with them and they told him that I could not stay because I was sick and could not risk infecting Brad. Ignoring the fact that I would have been most contagious the day before and earlier that day and he had been with me non-stop and ignoring the fact that the best thing for him then would be me nursing him so he gets the antibodies for whatever I have (which was likely what they all had already the previous couple of weeks). I love my husband so much because he said to them, "That isn't going to happen, she won't go anywhere since she will need to take care of him and nurse him in the night". He came back to the room. I think the called Allesandra and they came back in and said I could stay but Brad had to leave since only one person could be there and that I could not sleep in the bed with him but rather on the fold out chair ("bed of torture" as Brad would probably describe it). I was still worried that I would not get well enough but didn't have much of a choice....I wasn't leaving my baby. Brad headed out (it was now about 1:15am). He arrived back in the room about 20 minutes later and was said that the hosptial grounds were all gated off and he couldn't get out anywhere. He was staying regardless of what they said so he settled onto the fold out chair. They saw him there but nobody ever said anything to us. Morning came and Giovanni was off the blood transfusion and only had pain meds that were being weaned down. He was looking less Michelin man-ish and was ready to play as soon as he woke up. They did a blood draw to see if he need more red blood cells and he was great. The doctors came in and said that if he was able to come off the pain meds he could head home around 2pm. Yay! How exciting that after how horrible he looked the night before he would be heading home to his anxiously awaiting brother and sisters. At 2pm we were discharged and will return on Monday for them to remove the bandage over the central line. He is so amazing and strong and I hope he will have that continued strength for the next long hospital stay when he will need it most. Within minutes of being home he was walking around, terrorizing the kids and trying to steal Livi's snack. I could not believe it has been just 24 hours since they brought him back to us looking and sounding so bad.

****I had a completed looong post but lost it all so this is my attempt to retype all that was already typed. I need a glass of Moscato after the frustration of losing all of it I had typed and what better place than where I can buy a bottle for 3 Euros****

The upcoming timeline for Giovanni will include additional testing as well as an MRI to provide baseline. On February 13th he will be readmitted to the hospital and on the 14th he will undergo another small surgery to have more cells harvested and then will begin chemotherapy. I am not looking forward to this one bit. Motherly instinct still tells me to grab him up and run. It is more difficult than I imagined. I kept telling him I was sorry after surgery because I know he doesn't understand why we are doing this to him. I hope, however in the future that he understands and will be living a normal life...I pray every minute for a normal life for him so he can thrive and live the life you always imagine for your children. So...he will be in for 45 straight days and 15-20 of those he will be required to remain in his bed until his blood cells get to a level they need to be to protect him if he falls. I can't tell you how afraid I am for this upcoming hospitalization. It makes this little hospitalization seem like a cake walk. They did tell me that for the next hospitalization we will be in the new part of the hospital that is technologically advanced and we will have just their own doctors and nurses round the clock. No more screaming children, night owl roomates or soapless bathrooms.

Prior to that hospitalization we will also be moving to an apartment (flat). We have been living in two hotel rooms that are joined together and you can imagine with 7 of us it gets a little chaotic. We will have a full kitchen space so I can cook with more than one burner and an oven...yay! The only downside is that it not in the village we are in now so we will have to take the underground to the hospital. It is still in a neighboring village however so I know it will be a short ride. We will miss the little shops, our market, our Farmacia but I know there will be places there too and we will adapt.

Liviana also has an appointment on Monday with the physical therapist and I am hoping that she will receive the walker they ordered for her (did I mention that in my last post)? They had the technician come out and look at her walking and standing as as they concluded in Omaha they are afraid that full leg braces will shift her hips and cause additional issues for her. They instead measured her and selected a stand up walker, like a scooter and will try just lower leg braces that will help her with standing only when she is using the walker. She just lights up when she is walking. She has an amzing fighting spirt and strength. She isn't taking any of this as a sentence for herself. She will continue doing all she can do and more. I had a chance to talk to Allesandra about Liviana while we were in the hospital and she said that Liviana has a fairly slow progressing MLD given her 9 months of onset and where she is with her speech and motor functioning. I so feel blessed to still have her where she is given my research and exposure to other MLD children. I don't take any of the moments with her for granted and the fact that she was still able to say, "I love you" when I was getting her down for nap. I will always try to remember that sweet voice in my head even when I can't hear it in person anymore. I mentioned to Dr. Biffi that Liviana has complete stopped with some of her symptoms like the constant drooling and peripheral nerve symptoms like screaming during diaper changes (she started that clear back in May). She seemed intrigued when I told her that but she said that the change of environment, activity, etc can help keep her neurological system strong. I pray for a miracle...I believe in them and hope for one with her. She is truly an angel living among our family. We will continue doing all we can to keep her strong each day.

There is another family who arrived this week and was signing their mountain of consent forms on Wednesday when we were doing blood work. They appeared to be from the Middle East and the mother and I exchanged knowing glances of our painful journey's before we were ever able to speak to one another. We had a chance to meet them briefly that same afternoon. They are from Egypt...they have 3 children, two of whom have MLD including the little 6 month old guy they have brought to Milan for treatment. Her English is very little but despite that her and I share an understanding as mother's on this journey. We look different, our spirts are changed forever and I swear you can see that in our faces. When I am out and see mothers with chilren Livi or G's age I see something different in them than I see in myself. It is hard to describe....it is a carefree nature, a peace, a knowledge that thier children will be there for years for come. It is a hard difference to describe but I know I am not like them anymore...I am forever changed just as the other mother is changed. I can see the strength and fight in her eyes and I hope she can see that in mine as well.

Gah...I cannot remember what else I had typed on my first post...frustrating. Oh...I am better. I awoke the next morning with nothing more than a nasty cold an congestiong. I think my body was telling me that I was exhausted and stressed and I will try to heed the warning better next time.

I must go now. Brad and I are going to try to spend some time together tonight alone. We want to do things with the kids as much as possible in the next 16 days before Giovanni's hospitalization. It is will be hard on the kids. They missed Giovanni and worried about him terribly on this last hospitalization. That is long time to go without their sweet brother around. They will not be able to see him accept through glass for the 15-20 days until his cell count is where is should be and that will be hard for them. Brad or I must be in the room at all times so our lives are going to be dramatically changed for those 45 days. We will only pass in hospital room and will have to find a way to stay strong together even though we will be apart. I am hoping that I will have internet or I may go mad. I also will be able to post more often rather than these giant novel posts.

My computer was sent from home last week from the wonderful Angie Lauritsen. It is Milan and will be delivered on Monday. You know what that means....photos will be coming your way. I miss having sessions and processing photos. It is cathartic and I can't wait for spring to really set in here so I can try to get out with the kids without a risk of horrible coughing starting. I will always have my camera in hand in the hospital though and have photos of Giovanni from this last stay (prior to surgery). Thank you so much Angie for sending the computer for me!

I also wanted to say Happy Birthday to Jennifer Hendrickson who celebrated her birthday on the 28th. I miss you so much and you are an amazing friend! We could not be doing all of this without you.

That is all for now...I think :). I didn't proof read this and I am sure I left things out on the second go around but I have been on the computer WAY too long. I appreciate you all and those who are following this difficult journey along side us.

Hug Your Babies!

Amy

Illness, Sight-Seeing and Surgery.

I really hate titling my blog posts. I should have just started titling them as the number of days we have been here to make it easy. This was the best I could come up with....Exciting huh?

We have had lots of coughing going around here. Not that regular old winter cold cough but a nasty, very wet, very loud bronchitis type cough. It started with Aria, then Giovanni, then Liviana and then Miles. Miles is the one who never gets sick and he wasn't able to escape this nastiness. As usual, things hit Liviana harder. She can't catch a break. At first she seemed to be doing well but the night before last she woke up in the middle of the night and scared me to death with what seemed to be straining breath. I felt her abdomen and could tell that she had pulling...I could hear that she had the pulling (I am assuming moms know what I mean by "pulling"...I know CDH moms do). I called them first thing upon waking (this all happened around 4am) and they said to bring her in. Her lungs sounded clear, no temp so they gave us a prescription for some bronchial passage solution to add to the nebulizer they gave me for Giovanni a couple days earlier. We headed back with orders to call if she started running a temp and orders to not have Livi and Giovanni sleeping in the same room (I normally sleep between them). All was well until last night around 10:45 when Liviana woke up....with a temperature. I was frustrated with our thermometer which first read 98.5, then 99.3, then 100.1 all in a matter of 2 minutes. She felt warm so the highest I assumed to be correct. I gave her some Tylenol, did another breathing treatment for her and settled in on the most uncomfortable clot I have ever slept on with her for the night. She slept great and woke up seemingling breathing better. She still felt warm but the thermometer was giving me a low reading. I honestly don't trust it at this point. I called Miriam at the hosptial and said to come back in this afternoon. Liviana's spirit has been great, even with the fever. Usually when she is sick she becomes a shell of herself, hardly talking, playing, etc. That hasn't happened this time. In fact, keeping with the way she has been since we got here, she seems better than at home. So, today revealed that she still has clear lungs but definitely a bronchial issue. They did blood work (everyone in Milan can hear when they draw blood from Liviana) to rule out a bacterial infection and the need for antibiotics and she is all clear so we will keep up the breathing treatments and she should be on the mend quickly.

Back tracking now to this past Saturday. We wanted to take the kids somewhere before Giovanni's hospital trips began but had a hard time deciding given we are somewhat transportation challenged here. I feel this anxiety and urgency to take Liviana places to see sites she won't be able to soon experience and see. I also realize it is the simple things that bring the biggest smiles to her face. We thought of going to Genova on the Italian Riveria since it was only a little over an hour and a half away. The trains are reasonable here but staying at a hotel and food, etc just wasn't going to fly. We decided to make a trip down to D'uomo in the center of Milan. It is the location of Santa Maria Church. I read somewhere and now can't find my source, that it is the 3rd largest church in the world but I found another list that had it at 6th or so, so who knows. It was huge, nonetheless and awe inspiring. Really, truly amazing. Being Catholic does make it an extra special experience. I felt like I just walked around with my mouth open in awe the whole time looking ridiculous. I took many photographs and you will have to wait until this weekend when my computer arrives (thank you, thank you, thank you Angie) to see them. I can't wait to show them to you all. Here is a link to an info page on Wikipedia for the church:

After going through the Santa Maria we walked around the shops, ate lunch and soaked up the VERY busy streets of Milan. The kids were exhausted when we were done and we were super lucky to catch a mini-van cab that fit all of us since large vehicles are hard to come by around here.

We are scheduled to be at the hospital at Noon tomorrow for a blood draw for Giovanni prior to his surgery. Aria, Miles, Brad and I will also have blood drawn so complete family gene sequencing can be done. I would be lying if I said I was not the slightest big anxious for Aria and Miles tests. I know that variable onset in families is rare but given what we have been through and the already statistical rarity of it all, I am worried that we will get some devestating news from the tests. Giovanni will then be admitted to the hospital at 2pm and will have surgery Thursday afternoon (the 27th) around 1:30pm. This is surgery just to place his central line but it is always nerve wracking to send a child into surgery. Please pray that all goes well. He should only be in the hospital a couple of days after the surgery. After the surgery I should be getting a timeline for when he will begin his chemotherapy and 6 week hospitalization. I am not looking forward to that and I am a ball of anxiousness, fear and hope all rolled into one.

Gosh, I know I had a ton more to post but I have dinner to get ready and a breathing treatment to do for Liviana.

I am going to try to thank people each post but this is NOT all inclusive everytime. So many people are to be thanked and I am slowly getting through what I can to acknowlege all of you. Thank you so much to Angie Lauritsen, Don and Jodie Lakin, Jenny Peters (your visit meant the world), Fran Krause, Father Bill, Jill Robinson, Jeremy Hamm, Jeanie Hays, Vicki Beauchamp, Mathiesen family, Schleicher Family, Bill and Paula Morse, Jenn Lamb, Missy Thomas, Kelly Langfeldt....Gah..I have a million more to thank but I am doing it off memory right now. You all are angels to us and more importantly to our kids!

I will post from the hospital after Giovanni's surgery and I will have updates, of course on Facebook.

Hug Your Babies!

Amy

Flying Colors

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!

Amy

Ciao From Italy!

I am sorry this is so delayed. I have been running on fumes and just hadn't been able to find the time to post. I actually started a post last night and never finished it. I know there are many supportive people who are awaiting an update and it is important for me to share our story with everyone.

We had a somewhat eventful trip here. The chaos started in Chicago when we got to the very crowded gate and they had been paging us for 20 minutes. They checked us in twice but the tickets were still showing not checked in. We stood there with 4 kids, two of which must be held and 6 carry on bags and it was HOT in there. We finally got on the plane and I mentioned to the flight attendant that our seats were all over the place and we had small children that could not be sitting by themselves. She said the flight was not full so we should find seats around the area we were assigned. We did that and started drama when another passenger came over demanding her seat. Given that I was very tired from getting up at 4am that day, hot and emotionally drained I suggested that was fine if she wanted to hold one of our children for the flight. I know...not nice of me but they told us to find seats and we did just that. I was not going to have one of our kids sitting in a spot by themselves and the flight had a TON of empty seats. It all worked out and another flight attendant came by who reminded me of Mr. Pitt from Seinfeld and said, "So you have all just decided to camp out here". At first I thought he was being snotty but I realized he was just being witty when I said we were sorry for the problems and he said, "Yes, I already heard about you all from the Check-In". Ahhhh, what do you expect traveling with 4 young kids, a ton of carry-on and tired adults?

So...flight was great from Chicago to London. It restored my faith in flying. I can handle it when you are on a massive plane where you don't feel and hear every little thing...the nice seats, personal tv's and service didn't hurt though. Liviana could not get comfortable or sleep on the plane. It was a difficult experience for her and she just cried and cried. I wish she could have laid down somewhere to be comfortable but that just wasn't an option. Brad and I rotated holding her and by the time we landed in London she was doing better.

In London we were supposed to get our stroller from the plane since we gate checked it. It, however, wasn't there. Liviana is very hard to carry because her body is so much more rigid and she can't be held normally. Add to that a ton of bags and we needed that stroller that we picked out for her before leaving on our trip. They told Brad to go to baggage claim but since we weren't staying in London we could not go to baggage claim without going through customs. We only had 25 minutes to get from to our plane to Milan and at that point we had missed the flight. I got in line to get on the next flight leaving at 9:30 (original left at 7:05) and the lady took Liviana's passport and went to a back room. She came back out and said that Livi had been flying illegally on an infant ticket and they would not issue her a ticket to Milan unless we paid for her entire flight in a seat. I told them that the flight was booked from the hospital in Milan and that I did not realize it was an infant seat until we checked in at Omaha and they said we would be holding two children. Basically, without $2000 Euros we were not going to get Livi a ticket. It tried to call my contacts in Milan but did not get an answer since it was earlier here. Brad and I tried to get to some pay phones which was impossible with the way Heathrow was set up without going out through Customs or to our gate. Long story short the lady who helped me was very nice and asked if, without prying, she could have more information about the specifics of the medical trip. She took a letter I had from our doctor in Omaha and was gone for about half an hour. She came back and said that she was arranging it all with the travel agency in Milan and she issued Livi a ticket (an infant ticket) and told us to go get on our flight. Overall all of the people in London were so nice.

So...Milan bound, late, dragging, running on major fumes. Customs in Italy was nothing. Handed him our passports, tickets, he stamped them and that was it. Brad went to collect our bags and my bag, our stroller bag (which also had our coats in it) and another bag were missing. They said that they did not show any issues with them in the system and they would let us know if they turned up. I was stuck in my clothes for 3 days. Bags turned up late last night (midnight...we were up and it was a welcomed call) and the last one turned up today, torn up badly but everything there. Many of the kids favorite things were in the last bag and we were very happy to see it and the stroller...and my clothes!

So...onto the important stuff. Giovanni and Liviana have both been to the hospital. We really, really like the doctors and everyone here. They are very kind, personable and have less of a "wall" as you get from American doctors. On the second appointment both Liviana and Giovanni had blood draws for their gene sequencing. For some reason, the 5 vials they drew from Giovanni have not yet made it here so that is slightly delayed. They have postponed his surgery to have his central line placed until the 26th due to a surgeon availability issue. I am somewhat relieved at that because I get to spend that much more time with him before sending him in for this experience that terrifies me so much. At one point the lead doctor was watching Liviana play on the floor and she turned to me and said, "It is very hard to look at her and watch her play and know that I cannot help her too" I could see in her face a real caring and concern...a maternal side that seems to come out in the doctors here. I really can't say enough how nice they all are.

Giovanni had a neurological evaluation to confirm that he was pre-symptomatic. My heart just stopped as the doctor started spending a ton of time on his feet. Looking at them from different angles, flexing them, speaking in Italian to the other doctors. It seemed to last forever and I was so so scared they were going to say there was something that would exclude him from the treatment. After a long conversation between 4 or so doctors in Italian she looked at us and said, "He is fine". Oh thank Goodness! I asked what the issue was with his feet and they said that one flexes more than the other and we will have to watch it as he begins to walk. When we got back to the hotel I was talking to Tarah, our babysitter, and she reminded me that Giovanni does a half crawl, half-walk sometimes with one foot on the ground pushing off and the other in crawl position (does that make sense). The foot he puts on the ground and pushes off with is the foot they said he has more flex in. I am sure that explains it and I will remember to mention that to them on Monday.

Today, Giovanni had a cognitive evaluation. As expected, he is brilliant :). He is just so cute and such a Bello Bambino. They all smile and laugh at him and he just eats.it.up. He is so funny to watch and they told us he did very well and they do not have any concerns in that area either.

Liviana is going to get great care here. We are so, so happy. She will get an evaluation on Monday and Wednesday along with Giovanni for physical therapy and her cognitive evaluation. She is sick again and had a fever this morning. All of the kids accept G seem to have a nasty cold that is lingering. I think it is what Giovanni had last week. Things just hit Livi harder. They gave me their cell numbers and told me to call them day or night this weekend if we are concerned about her. Our first night here Livi and Giovanni woke up at 1am and wanted to play. I brought them out to the "living room" and Livi was wanting to stand, walk holding my hand and was having a great time. It was so wonderful to see her so happy and active. This Italian air will be good for her, I can tell.

Aria and Miles are doing really great. I think they are going a little stir crazy in this small space so we are going to get out tomorrow with all of us to see some sights around us. Aria always says, "It is so beautiful here". She is so sweet. She is picking up on the words and language so quickly and is eager to learn. We will be doing school activities as we can too.

It is amazing to be in Milan even if it is for something so difficult. My observations so far are the clothes are awesome, the groceries are cheap and heaven for a foodie like myself and that I should have taken Italian in HS and College instead of French. I have French in my head all the time and I am impressed with how much I remember. I caught myself saying "oui" to our waitress the other night.

I am really scared about what Giovanni is getting ready to go through. Reading the details of his treatment is very hard. My mother instinct really tells me to snatch him up and run as quickly as I can. You think of treatment as something you do with a sick child, not a healthy, strong, vibrant child. I know we don't have an option though. I can't sit by and wait for his decline and demise. It is just so very hard. He will have to stay in his bed at the hospital for 15-20 days after his 3 day chemotherapy course. This child doesn't stay still for anything. I don't know what else to say...I am just so scared for him to go through all of this and not know why. We are supposed to protect our children and even though that is what we are doing the process to get to that point won't seem like that to him.

He has awakened and needs his momma to love and hold him.

Everyone's support means the world to us. We are trying to stay strong and doing it together. I promise to take photos tomorrow and a video of the kids. I hate to rub this in for my friend and family back home but it is in the 50's here :) but they think it is cold. We have seen people in ear muffs and big puffy coats while we want to skip along the hospital grounds like it is spring (ok, maybe not skip but it definitely feels like spring here).

Thank you, thank you, thank you for supporting us on this journey.

Hug Your Babies!

Eeek...Leaving Tuesday Morning for Italy

Sorry I had not updated with the details of our trip. We will be flying out on Tuesday morning at 9:55am. This past week is a giant blur and I hope in middle of that blur I have accomplished something in preparation.

We headed to Minneapolis on Wednesday night so we could get our passports Thursday morning. We left Omaha at 8:00pm on Wednesday, got into Minneapolis at 2:30am, got to bed at 4:00am and the alarm went off at 6:50am. Somehow, Brad and I are operating on an energy of "We must do this" so it all worked out well. He drove the entire way there and back on little sleep but many red bulls (for Brad, I have a nursling who wouldn't do well on caffeine). The kids did great on the long amount of time in the car. Liviana had her Calliou videos but she did have a few times of difficulty and irritability. It makes me so sad when she gets so inconsolable. My "normal" mothering isn't enough so I am learning what works for her now vs. before.

Once again we have been so completely overwhelmed by the kindness of strangers. We have been able to relax a bit about finances while we are gone and not worry about how we will keep our home so we have a place to return to....a place to bring our babies home. That is a HUGE weight off our shoulders that adds to what is already a stressful life event. I can never thank all of you enough. I have an inbox full of messages on Facebook and my personal e-mail that I am slowly trying to get through. If you have e-mailed me and not heard back it doesn't mean that your message was not read. I just have not been able to respond to everyone with the travel plans, kids and wrapping up loose ends with my business. You have all touched me so much by your kind words and how you have all kept our family in your thoughts and prayers.

Liviana is having a pretty good week. She is feeling better and well...she has new Calliou movies thanks to the lovely Melissa Morris. She has been eating a ton and that makes me happy since I know we could easily be facing a feeding tube right now. She has those times where we don't know what is wrong or how to console her but we try to give her everything she needs and keep her happy and comfortable.

Giovanni has been battling a nasty cold for a week or so and I ended up putting him on an antibiotic so we could get him well before his treatment begins. He had such a nasty, wet, bronchial cough and I didn't want to risk it turning into something more serious. He is much better already. Other than the unsightly snotty nose he has been up, down and all around and he is WALKING :). He is so proud of himself and so darn CUTE. I will have to get a video of him before we leave (thanks for the video camera Missy :)). He things he is quite funny and has a new, boisterous laugh he lets out when he has done something to amuse himself. He is so big and healthy. I want him to stay that way.

I was scrolling through my old cell phone last night looking for a specific photo for someone. I had to scroll past numerous photos Miles took of the walls, floors and his own face WAY too many times (it is a cute face though). I would also pass photos of Liviana from a few months ago, smiling, walking...the walking was so hard to see. I just stared at them. She can't walk anymore....it is stunning how quickly it all happened. I have had dreams of her walking many times as I shout to everyone around, "Look, she can walk, it is a miracle". It is like a scene out of a movie but for those moments, even though it is just a dream I am sure I am smiling.

It is the little things....don't ever take your child walking for granted. Even if they are meandering too slow, taking their time, skipping...whatever...just let them, love them, admire their own pace, their own interest in taking life slowly and soaking it all in. I myself have gotten frustrated with my children walking too slow, doddeling, when I am in a hurry. I look at the simple act of a 3 year old walking much differently now. Bless her heart. She has handled the overnight (literally) loss of walking with much more grace than most adults ever could. She is the inspiration, not me.

Giovanni has fallen asleep on Brad and I need to get him to bed and keep plugging away at the packing, planning, e-mailing, etc etc. I don't like to fly...have I mentioned that. I don't. I will take comfort in us all being together but I may take a nice stiff drink too :).

A quick set of photos from Minneapolis.

































More before we leave on Tuesday morning. I didn't proofread this so I apologize for any horrible errors.

Hug your babies!

Amy

Italy Bound

The arrangements have gone so fast in the last two days for our trip to Italy. I wanted it all to go quickly because each day that goes by I get more and more anxious that Giovanni is closer to onset and he must be pre-symptomatic for treatment. Goodness it feels like such a whirlwind. We are leaving for Italy on January 11th because they want to begin Giovanni's treatment process on January 18th...Liviana's 3rd birthday. Giovanni will be 1 on January 16th.

This is a copy and paste from Dr. Biffi's e-mail of what Giovanni's treatment will entail: Giovanni will first undergo collection of a small volume of bone marrow (upon puncture of the iliac crest) for safety reasons (it will be stored in case of future need) and positioning of a central catheter. This will require a 3 days stay in the hospital. Thereafter, Giovanni will undergo a disease staging and general health status evaluation that will consist in a number of laboratory and instrumental test to be performed in the following month as outpatient services. Then, approximately one month after the first bone marrow collection, we will begin the treatment. This will require a stay of approximately 6 weeks in the hospital. Thereafter, we will monitor him 2-3 times/week in the outpatient service until we will fill safe to send you all back to the states. Importantly, if we enroll and treat Giovanni, you will be asked to come back to Milano every 3 and then 6 months for clinical evaluations.

I have such an opposing mix of emotions as I read over and plan mentally for Giovanni's treatment. First, I am so hopeful that this will be what he needs to halt this horrible disease in his body. Then, my mind kicks into mama bear mode and I cannot imagine putting my "healthy" child through such an experience. We are supposed to protect our children yet I am going to hand him over for something so painful and difficult for something that isn't even happening to him yet. The other side of me of course knows that the alternative is waiting a year and beginning to see the same rapid decline in him that we have seen in Liviana with the same awful fate much to soon in the future. I also truggle with treatment for one child that the other cannot receive. I know however, if Liviana could make the decision that Giovanni get treatment even though she can't she would not hesitate to say, "Go for it". She ADORES her baby brother. Her face lights up when she says, "G-monny".

We didn't have passports yet so the only way to get them quick enough and guarantee we would have them in time is to go in person to get them. A wonderful client, named Lindsay Murray works at Senator Johanns office and contacted me offering help from their office and she put me in contact with Whitney. What wonderful clients I have! We will be leaving, as a group (I lovingly think of us as the Griswolds) for Minneapolis late tomorrow for an 8:30 am Thursday appointment for our passports. We just can't do anything easy around here.

I haven't been able to sleep much since New Years Eve when Dr. Rizzo told me that Giovanni was accepted into the Italy trials. I sleep at night between Liviana and Giovanni. I have been laying awake staring at the ceiling listening to them breath. I know as parents we all find ourselves listening to that slow, rhythmic breath and loving every minute of peace on their sweet angelic faces. That breath has new meaning to me these days. I beg for those breaths to continue, to not ever weaken, to not ever stop. I look at their sweet faces and cannot for one second imagine not being able to see them. It keeps me awake...it makes me cherish every second no matter how chaotic and stressful.

As Brad and I have navigated our way through all of this I have told him that we must look at it from this perspective...There are so many people out there who get that unexpected phone call that their child has been lost in a car accident or other tragic event. Their child is gone forever and they are left to relive those last moments as they left home that day whether it was a good exchange or bad exchange...that is the last sound of their voice. We have been given a gift, in a way, because we know ahead of time what is around the corner so we have the opportunity to cherish every darn second, live in the moment, cherish the moment and realize the importance of the moment so much more than most people ever have the chance. I insist on making a positive out of this horrible experience. I must. It does not serve anyone, particularly our kids, for me to succumb to my emotions and sit in the corner and cry (like I do in my mind). I may be rather scatter brained at times and I spend way to much time standing in the kitchen not knowing why I am in there these days but I am trying to do what I need to do as a mother...it is what we would ALL do as mothers.

Many more updates as we prepare to leave under the illusion of organiztion :).

Hug Your Babies!

Amy

Many Updates...Some Hope for Giovanni...Hopefully.

I hope you all had a wonderful Christmas and New Year. So many wonderful people, some we know and others we have never met donated and went shopping so our kids would have a wonderful Christmas and take the stress of the holiday shopping off of us. Our kids had a wonderful morning and just seeing the smiles on their faces and excitement (which for Miles comes across as non-stop chatter) was enough to, for one brief moment, take my mind away from all of the fear, sadness and anxiety of Liviana and Giovanni's diagnosis. The kindness of everyone really is very overwhelming and means so much more than anyone could ever imagine.

Liviana started getting sick the week before Christmas with what seemed to be just a nasty runny nose...the typical winter cold. By Christmas weekend however she was running a fever and pretty much unrecognizable as herself. I medicated her fever immediately since for her, we know that it can precipitate a rapid deterioration. We attempted to give her a bath, a favorite activity of hers on Sunday (the 26th) and she cried through the whole thing and could not even sit in the tub because her tremors were so bad. It was painful to see. Her fever lasted on and off for only a day and a half and she is slooowly getting back to "normal". She had a successful bath yesterday and splashed like she used to. I was so glad to realize that it was her being so sick that made it so difficult last time.























I was so happy to get this smiling photo during the 10 minutes of sun she soaked up in the 65 degrees on New Year's Eve.

Since her mental decline started she has decided that the playroom is her "comfort zone". She always wants to be in the playroom, watching Calliou. Those who have known me for a while know that I could not stand Calliou. I thought he was whiney, annoying little child and I used to change the channel each time it came on. Go figure it would become Liviana's obsession. I have to admit to not even minding the whiney little Calliou much anymore because it makes Liviana so happy. I hope people who visit realize that we don't isolate Liviana in the playroom. We bring her out with us all the time and within a minute of being away from her comfort zone she is asking to go back to the playroom (sometimes screeching to go back to the playroom). We want nothing more than for Livi to be right beside us like she used to be all the time but we have to acknowledge that things are what they used to be and she finds happiness in that room, in her chair, watching Calliou. We still get her up all day long, get her feet and legs moving and play with her but she wears down quickly and we hear that sweet voice say, "I want to go to playroom". We tried making her spaces in the office or living room where we are all the time but they didn't work for her...she still wanted the playroom. Sometimes she seems so mentally sharp and other times I am reminded painfully of her decline. One day she was sitting on the floor of the living room with me and suddenly started crying and saying, "I want to go home". I said, "Livi, we are home"..."We are hooome?", she said, "yes sweetie". "Is Daddy home?", "yes, Daddy is home". Little things like that happen on a daily basis. It is kind of like she is a mini alzheimer's patient if that helps put it in perspective.

The past couple of days she has given us great gifts of laughter and smiles. Apparently, Brad doing the running man for her is HILARIOUS (you should ask to see it) and of course, she asked me to do it as well...she liked Brad's version better. I truly thrive on those moments where she is laughing and smiling. Those moments keep me going.

Now, onto the G-man, Gio, Little G :). Giovanni is still pre-symptomatic, which means he has the chance to receive treatment that can slow or possibly even halt the progression of the disease in him. The options in the US are Bone Marrow Transplant or Stem Cell Transplant. Both have poor outcomes for Late-Infantile onset, which is what both Giovanni and Liviana carry. The process carries numerous risks, extensive chemotherapy, possible rejection issues since donor cells and bone marrow are used and extensive (possibly years) or immuno-suppression drugs. I have researched and asked questions and along the way have not felt comfortable at all with the options for Giovanni. It is a tremendous decision for any parent to make...I would not wish it on anyone. It doesn't seem right for Giovanni though.
























An attempt at some "organized" photos after bath time ended in a few shots off and a naked tushy flying past me to play.

In Italy they are in the beginning stages of Clinical Trials of Gene Therapy for MLD. On a VERY basic level they use Giovanni's own cells, correct the ARSA gene deficiency and insert the cell back. There is very minimal chemo since it is his own cells and there is no rejection issues or immuno-suppressive treatments. This is what we feel comfortable with and this is what we feel is the best option for Giovanni. Our doctor here, Dr. Rizzo, has been wonderful and contacted the doctors in Italy before we even met with him and received Giovanni's diagnosis. He has taken all of the steps with them to determine that Giovanni did qualify and could be entered into the trial. Giovanni's gene sequencing had not been done yet because they were awaiting insurance approval so the doctors in Milan said to send it to them and they would run the sequencing. We are taking Giovanni and Liviana to the hospital tomorrow morning for blood draws that is then being sent straight to Milan. I will save my commentary on, "US citizen awaiting insurance approval has to send blood to another country for testing".

I expect to begin discussions with the doctors in Milan on Monday since this all fell on a holiday weekend on Friday. To say we are anxious is a massive understatement. I am hesitant to put all of my hope for Giovanni on this treatment but I would travel to any end of the earth for my kids lives....hope is all I have right now.

Giovanni is a very robust child. I think Dr. R. was surprised how strong, healthy and big he was. I swear he has the throwing arm of a 2 year old and he plays hard almost all day long.

It is immensely difficult to be able to get treatment for one child but not another. We will travel as a family for Giovanni and make sure that every moment of the life Liviana has left is filled with smiles, laughter and love. I can stay positive if I think of the gift Liviana is giving Giovanni through all of this, a chance to live, and the gift he is giving her through all of this, a chance to see beautiful parts of our world before losing her sight. It is very important to me that Liviana will have the medical care she needs while we are there including PT and OT so those will be discussions during this week also.

Giovanni is way ready for a nap. I had more to say but I will save it for this week since I know there will be much to update. This has not been proof read so I apologize for any confusion.

Hug your Babies!

Amy