Loooong Overdue

Wow...May 30th was my last update? I can't believe it has been that long. I apologize to those of you who truly care about Liviana and Giovanni and have wanted to know what was going on. Most get updates through Facebook and have been able to stay up to date. It means so much to me that people have been touched by our kiddos. We think they are pretty amazing and I always wish everyone that follows their story could meet them and see their faces, their smiles and their spirit. We really, despite the medical hurdles we face with Livi and G are so incredibly blessed with 4 beautiful, kind, compassionate, fabulous, perfect children. They keep us going, they make us smile and laugh and teach us to remember that each day is truly a gift...and that one should excitedly tackle that day at 6am :).

Wow...a lot has happened since the end of May. The last week in Milan was one of ups and downs as they told us we could go home, told us we couldn't, changed the date of return on us about 5 times, told us we had to wait longer and then finally, after I told them I absolutely had to be home by a certain date, booked our flights home for June 2nd. We arrived back in Omaha on the evening of the 2nd. We were so happy to be back in Omaha even if it was 3am to us.

We were met with unexpected obstacles coming home but thanks to good friends and strangers we were able to get past the issues and refocus ourselves on being in Omaha again and being comfortable in our own home. Doctors appointments, reestablishing my business, reconnecting with friends, Liviana's changing needs, childcare help, finances, Brad returning to work, more doctor's appointments....it was a settling, yet busy time.

I really, really wanted nothing more than for Aria and Miles to feel stable again. I can't believe how awesome and resilient they both are to be pulled out of school and dropped in a foreign city for almost 6 months. They talked about Omaha and school all the time. They made good friends in Milan but they both craved what they knew as their lives before...the parks (not graffiti covered), playing in the front yard, their beds, their stuff, their playroom, the zoo, Target, their bikes they got for Christmas and never had a chance to ride....they looked forward to so much. We saw a change in them when we got home. I don't think we realized how much being in Milan impacted them until we got home and saw them act like the Aria and Miles we knew before. The smiles on their faces meant the world to us.

Since we got home, just 2.5 short months, Liviana's decline has been dramatic. In reality, her decline while in Milan was dramatic as well but the silencing of her voice in July is so difficult and painful for all of us. I noticed shortly after we got home that she seemed to not be able to say "mommy" anymore. The last two words she could say were "Daddy" and "Ciao" and then...those too were gone. I can still hear her in my head, saying the ABC's loudly when she was instead supposed to be going to bed. I can still hear her, "Me Awesome", her "Allllright" and her "Lub You". I feel like I have this old fashioned film reel playing in my head sometimes where I see her running and playing just a year ago...less than a year ago. I feel removed from the situation sometimes. I cannot imagine a parent seeing their child going from an active, normal 2.5 year old to the physical equivalent of a 4-month-old in less than a year and then I realize that is us, that is our Liviana. I blindly do all I have to each day separating myself from the emotion and pain of it all because that is truly the only way to get it done. Letting the situation consume me mentally would render me completely useless to my family.

Towards the end of our time in Italy she had great difficulty still holding her cup to drink. We continued to have to thicken her liquids more and more while there as well. By the time we got home she could not hold her cup anymore, we had to do it for her. She was still eating well and large quantities. She has always been a lover of food. She seemed like a bottomless pit and would eat and eat and eat if allowed to. Even into the end of July she was easily eating more than Aria and Miles. We had to feed her, which we didn't mind at all. I spoke with both her Metabolic doctor and her pediatrician about not wanting to rush a g-tube if she was still doing so well eating, as I felt it was a slippery slope. They both agreed and I was grateful for their conservative approach to the issue. Towards the middle of July I scheduled a swallow study for her, as we were seeing her struggle a little more with solids, which had not ever been an issue before and it concerned me greatly. It seemed to down turn so quickly. The weekend before the scheduled study on the 28th I had numerous concerns as she was struggling more often and it was to the point that she started refusing food. Our lover of food suddenly did not want to eat anymore because she knew she was struggling too much. We had a couple of scary moments with gasping after taking a bite and I noticed she seemed to have rapidly lost her oral motor skills and ability to move her tongue as needed to move the food around. I called the doctor first and they said to take her to the ER, which we did. She was admitted on Monday, July 25th and had surgery for g-tube placement on Thursday, the 28th. The same doctor who saved her life at birth with her Diaphragmatic Hernia repair also did her g-tube surgery. He said her diaphragm looked beautiful :).

We aren't supposed to take milestone steps backwards with our kids. From the time they are born it is all about what new thing they can do, what new milestone they will meet, what progress is being made. It is difficult to take such monumental steps backwards, especially when I had such fear that this one big step backward would quickly spiral into more. I wish the people from different departments like the "feeding specialists" or the home health people were given better information on Livi's diagnosis before discussing things with us. At one point the feeding guy was showing me the cup that Livi could use and making sure she was doing okay with their thickened liquid (she could still do puree or very thick honey liquid after surgery) and he said, "as she gets better and doesn't need this anymore" and "she should get help from OT so she doesn't need the tube anymore". I had to stop him and let him know that she won't be getting better. It is such an awkward thing to have to say. The home health lady asked from their standard survey, "how long do you plan to use the feeding pump, etc....what are your goals for her getting off of them". How do I answer that? I just wish they had better information before coming in given that some children do have terminal diagnosis and won't ever be off of them until they pass.

In true Liviana fashion she was released the day after her surgery. I asked for a neurology consult before we left because I wanted to make sure that she was getting what she really needed to address her nerve and muscle related symptoms. Up until then she was still just on the drops that we were given for her in Italy. She got them as needed and some days that need was greater than others. It was decided that we would try her on Baclofen for her muscle spasms...again, another slippery slope in my mind but I want her comfortable. Seeing her in pain and crying and not sure why is extremely difficult.

I had every intention of making Liviana's feeding formula myself. Formula is great if you have no other choice but none of my kids have every had formula and I truly believe that whole foods is the best thing for her to help her thrive. Taking the steps to make her food is much, much easier said then done. First of all...I can see the doctors and nutritionist get nervous as soon as I tell them my plan. They are much more comfortable with having a nice shiny can with a label so they know exactly what she is getting each day...even if it is not made of actual food. Second, I know a lot about organic food, healthy food, whole, raw foods, vitamins, nutrients, antioxidants and all the other wonder in things like Tumeric and Spirulina. I am somewhat annoying to my family when it comes to making sure we are eating REAL foods. However, knowing all of this is just the tip of the iceberg to understanding the quantities being made at one time and the calories, fat, vitamins in each batch, the conversion of ml's to ounces to cups, etc. etc. etc. I found myself swimming in all new information. Then, the third issue was not having the necessary equipment to even make her meals. I lacked a juicer and a powerful blender. My $19 Oster just wasn't going to cut it...it didn't cut it just making smoothies for the kids.

Liviana was on formula for her "feeds" (Brad hates that word since he grew up on a farm and it means something different to him) at the hospital starting the night of surgery, on Friday and then for half of Saturday at home. Saturday afternoon I still did not have what I needed and was still pouring through the dietary information trying to find what would be best. Each time I had to start her on a feed with the formula I felt sick to my stomach. It smelled awful and she seemed to get really uncomfortable and cry powerfully 45 min to an hour after each meal. By the 5:00pm I could not do it anymore. I tried to make her something out of the fresh fruits and veggies and meat we had at home but my blender could not reduce it enough and I ended up ruining 3 bags trying to get it to run through the pump. I felt my entire body full of tension and I felt horrible that I could not give her what she needed. I left and ran to a local Nutrition store near us and found a whole food powder mix that was substantially more complete then the can of formula but had some of its own other issues. It would work perfect for a few days though while I figured out what her main formula recipes would be. It was a powder that needs to be mixed, which the pump still didn't like but I can handle beeping every 5ml that I have to reset over non-food formula going into her body. That was the first time, after the first whole food meal, that she didn't scream afterwards. Temporary success!

A wonderful client, and friend had an extra juicer she loaned me which I was very, very grateful for. It is an awesome machine...it is oddly rewarding to see the juice coming out. I have gotten organized and Liviana was promptly switched to our own recipes. They change with each batch because I do not see the point in her getting the same thing every.single.day since we don't eat like that normally. She eats far, far better than we do and probably 98% of the population. I am very happy to have a pediatrician who has a similiar belief about what is best for her nutrition wise. I am still trying to find the best options and when I get a few recipes down well I will share them on the blog for other parents...although the needs for each child is different.

Gosh...so much rambling on about food.

Since surgery Liviana does struggle more with her muscles and otherwise unknown pain. We have more tears and more times that we simply do not know what is wrong. So many MLD parents have said that anesthesia from surgery speeds up the progression of the disease and that was one of my fears for her. I can't express how difficult it is to not know what is causing her pain and her crying. There is absolutely nothing more helpless. We hold her and kiss her head ( a million times a day ) and we try different positions, making her laugh with silly songs, walking around with her...anything we can do to put the smile back on her face. Sadly, laughter sometimes causes her to stiffen up too much and it turns to tears as she can't get her stiff arms and legs to relax. She still amazes me though how she keeps smiling when she can and laughs and we still see that sense of humor we all know from her for all of these years.

Here is a photo of our beautiful girl from early July.






Since we returned from Italy we had been in back and forth e-mail conversations with the Make-A-Wish Foundation for Liviana. When we spent time thinking about what Liviana loves the most we knew it was the beach. She was so calm and at peace when she got to go to the beach in Sardegna. We had no desire to take her to Disney Land or something similar. She can't enjoy those places since she can't even ride the rides. We knew we would not put her on a plane and make her endure a flight to see the beach either. After some research in land locked Nebraska we decided that she would enjoy going to Lake McConaughy in Western Nebraska. It is a doable 5.5 hour drive that she should be able to stay comfortable during. Plans were made for us to go August 11th to August 17th. The kids were very excited and we told Liviana every single day she would be going to the beach. As expected, the first day at the water she just melted in my arms as the water hit her feet. She almost fell asleep right there hunched over on my arm. Making the trip even more special are all of the people at Lake Mac who opened up their home and their hearts to our family. The Cooley family, the people at the Martin Bay Church, the LeMoyne Senior Center, Scott and his wife from Admiral Cove Resort, the Nebraska Games and Parks and I am sure so many other people we do not even know. Thank you all for making sure this was a peaceful and enjoyable time for Liviana and our family. We also want to thank the amazing Jennifer and Kristen from MAW for all of their work for our family. We really enjoyed having you to our home and we are serious about you coming over anytime Jennifer :).

I haven't even uploaded the photos from our trip yet. I have been pretty busy with work before and after our trip but when I do I will post some here for everyone to see. Our drive home was easier than our drive there. The entire 5.5 hour drive Liviana never made a single solitary peep. She just sat and smiled, listened to her crazy siblings and watched TV. I would look back at her and talk to her as I got her "meal" ready and she would just smile. She is such an absolute angel who doesn't deserve this...no child deserves this.

Giovanni is amazing! He is a rambunctious, normal 20 month old. Liviana was a rambunctious, normal 20 month old too though. I look at him with such hope and fear all rolled into one. I cannot stand the though of knowing he may face the same thing Liviana faces. He is so happy and entertaining. He makes me laugh every single hour of the day. He LOVES, LOVES, LOVES Livana to death. He is so protective and loving towards her. He loves giving her kisses, he gives her her bear when it falls, he used to even take her her cup when she was still using it and give her a drink. When we were at Lake Mac, Livi's cousin Bella, who is 2, came walking towards her in her seat. She wasn't going to do anything to her, just curious, but Giovanni came flying in front of Bella like lightening, sat down between her and Liviana and put his whole arm across Livi and made squealing, "back off" sounds towards Bella if she moved. I stood there and watched in loving awe. It truly moved me. He repeated this again about an hour later when he didn't like how close Bella was to his sister. Bless his sweet heart. I remember crying in our pediatrician's office shortly after Livi's diagnosis because she loved her brother so much and I was so afraid because of this disease he would never really know her since he was so young. I see now an absolutely amazing, powerful bond that I could not even have imagined between him and his sister. We are so blessed beyond words. I hope at this age he is able to hold her in his memory forever.

I was scheduled to return to Italy on August 24th for 2 weeks with Giovanni. Given Liviana's daily increasing needs and how frighteningly rapidly things go downhill for her I absolutely cannot fathom the idea of leaving her. It almost gives me a panic attack. In addition, the visit would require both Brad and I being off work again for 2 weeks, something we simply cannot afford to do given all the recent time off for her hospitalization, appointments, etc. This visit was just for testing. Giovanni will not receive any more "treatment". They were going to do an mri, motor skill evaluation (which was scheduled for less than 24 hours after our arrival), abdominal ultrasound, hand x-ray...follow up testing to everything that was done prior to treatment. There was also blood tests and a bone marrow aspirate that would be done during the MRI. Given it is 2011 I know that the testing can be done here without problem. I also know that they have come to the US to transport blood and other samples back before for other families. Last word was that they were refusing the request for me to not come but I simply am not going ( I would be planned to leave this Wednesday). It is far from the best interest of my children and family and that is and always has been my priority. We don't intend to exit the study so we are trying to make accommodations so they still have the study data they need without a 2 week trip to Italy to get it.

We have met some absolutely amazing people through all of this. There are angels on earth all around. I could not even begin to list every single name out there who have touched us all and helped us through these difficult times; Angie Lauritsen, Annie Pensick, Jennifer Morais, Danielle Holtzman, Tonya Cantu, Katherine Elizabeth, Lina Sereno, Michelle and Cristiano, Erica Lomnes, Koski Family, Jaclyn Waldow, Nett Hutfless, Jen Pinkerton, Jodi Haselden, Veronica Daehn, Kristen Treat, Wendy Thamm, Joy Sakalosky, Shannon Wallace, Mathiesen Family, Lakin family, Sara Todd, Angie's neighbor ( I am terrible with names)...I KNOW there are a ton more...people who send one little message to me and make me smile and help me through a rough moment. I appreciate you ALL so much. It is extremely hard living in a city and state without a single family member. Coming home from Italy and knowing we did not have family to come home to was softened by having good friends who had our back and were there to make sure we did not fall. Good friends are truly invaluable.

In times like this we also unfortunately see the not so good in people. Things could not be simpler with my family. We really are very simple people, leading simple lives day to day, doing it all for the kiddos. I have heard the most horrific words said about my daughter, devaluing her life...absolutely horrific. I don't have anger. Anger is a useless emotion for me right now. I truly feel sorry for these people and those who stand behind them. They must have such deep sadness and be seeking something so desperately that they try to find it in such sad, sick ways. I read a quote months ago that said, "A taste of righteousness can be easily perverted into an overweening sense of self-righteousness and judgmentalism". I have seen self-righteousness in many disguises. I have learned so much and gained insight into myself through others. I have never been one to ever involve myself in anything dramatic and I have gone even further from that through all of this. I am extremely quick to shut people out if they create chaos for me mentally in my life. I have to be able to focus on my children and outside sources drama when I really am going about a difficult day to day reality are not worth a single moment of my attention. It is really a great and freeing feeling to eliminate unnecessary stress from ones life.

Thank you to Jennifer Morais for organizing another auction for our family on her own. It was supposed to start this past Friday but someone reported the Liviana and Giovanni's Journey Facebook page and it was shut down for a few days. The auction will be held instead on Friday, August 26th. You can visit the page HERE.

I am thrilled, after talking to Dean Suhr from the MLD Foundation that at my request, they will be able to start a fund, within the MLD Foundation for families that choose to seek treatment for their children away from their homes. We know the financial burden these families face leaving their jobs for extended periods of time. The fund will not be limited to families seeking treatment outside the US only. Dean and his wife are traveling and preparing for the MLD Family conference in England right now but when they return they plan to open a page specifically for people to donate. We will be giving 10% of our auction donations to the fund to begin the assistance for other families. We are so happy to do this for others.

I do have a house and kiddos that are in need of my attention. I am running out of time on my daily task list and this post has of course gotten long. I still have much more to share and plan to post again soon...no promises though because I can't predict our days around here.

The kitchen is calling my name, G wants his mama, I need to check on Livi's meal and Miles is "hungry" (always!).

HUG YOUR BABIES!

Mountain Climbing

I know that it has been a long time since my last update. I apologize, as I know there are many people who have been following our story and have been wondering how the kids were doing. All is well. Giovanni is indeed a rock star and Liviana is still smiling and laughing.

It has been a busy month of May, which is in part why I had not gotten a blog post done. Now I sit here with a packed full month of news to share. I am sure this will turn into a novel quickly.

Mountain climbing....I have felt like we have been climbing a mountain since November 17th when we got Liviana's diagnosis of Leukodystrophy. It hasn't been a casual climb either but rather the feeling of a moving mountain that forces you to keep going to exhaustion...kind of like a treadmill that you can't get off of set to the highest incline. You can't go back down to where things were normal, level and calm and you can't take a break because the reality of that mountain is right there, under your feet, forcing you to keep going. Every once in a while, we will come to a brief plateau that allows us to take a deep breath and even enjoy the view. Those moments have come at times when Giovanni got out of the hospital, when I snuggled in bed between Liviana and G and night, when Aria sat and held Livi's hand and talked to her...those have been the moments where the view was enjoyable and not the exhausting, scary, steep mountain. Once May hit we found ourselves with more of those enjoyable plateaus. It was those moments that we found ourselves able to take those breaks and breaths on the plateau for longer than we have since November...enjoying the view, enjoying the smiles on our kids faces. We are so thankful for wonderful friends we have met here in Milano who have played such a huge role in this last month of smiles and laughter.

In early May, our friends Michelle and Cristiano invited us to the mountains for an afternoon. We have seen the Alps from the train on clear days (there are not many). I found that those clear days of mountain views was what kept me going on those back and forth hospital trips. We were eager to actually see the views up close and get the kids out of Milan. Many people would be surprised to know that the air quality in Milan is quite horrific. Black film accumulates on balconies, clothes hung outside too long need to be washed again, kids have "smog cough" and we have all suffered regular headaches. The prospect of getting out of Milan and breathing fresh air sounded fabulous! We were worried about how Liviana would handle the hour long car travel in a car seat. Before we left Omaha she would scream in the carseat. It was uncomfortable on her legs and body. To our surprise she was nothing but giant smiles and laughter our entire trip up and back. She was snug between Aria and Miles in the back seat of the car we road in. They all had so much fun laughing together. It really brought me so much joy to hear. There were many tunnels next to and under the mountain on our drive and Liviana loved the tunnels. She would squeal...literally a squeal...the cutest thing you ever heard when we would go in one. On the drive back Aria and Miles both slept but Livi stayed awake enjoying the ride and the tunnels. After a while she said, "Daddy". I said, "Sweetie, Daddy is in the car in front of us". So, louder she called out to him..."Daaaadddddyyy" as if he could hear her. It was so cute. We don't hear her voice as often anymore as she loses her ability to speak so those times we do rings so beautifully in our ears. She seemed to absolutely love the mountain air and experience. The other kids did as well. Miles, in true Miles fashion took his time on the trails. I stayed behind with him as he asked a million questions, walked slowly, picked up rocks along the way for my pockets :) and found his perfect walking stick. Aria thought everything was beautiful and loved having her picture taken with the snow covered mountain top behind her. Giovanni was as always, smiling and being adorable. He was at this point, just starting to smile for me when I took photos like a true model :).

The day was really fabulous and we are so thankful to a great family for taking us there. The 2nd week of May another great friend, Erica, we met here in Milan invited us to the amazingly beautiful Island of Sardegna. She hosts a conference for Immunologists there every year and had the rooms booked out already so our stay and food would be covered. It sounded like an absolute dream come true. Ever since we got here I have been trying to find somewhere we could take the kids out of the graffiti covered city. This has been a hard experience for them, asking to go home to Omaha weekly, missing school and their friends,etc. I did not want this whole trip to be all the uphill mountain climbing for them either. I specifically hunted for a lake or something similar so Livi could soak up the sun like we had done on the balcony during the early spring. I knew she would love the beach and I desperately wanted her to put her toes in the sand while she could still see, feel and experience it all. I priced our travel to the island and came up with a pretty steep total once converted to US dollars. I told everyone we would not be able to swing it. A day later, Erica e-mailed me saying that she had long needed professional photos taken at the conference for the website and brochures and she would take care of our travel in exchange for me taking photos at the conference. I was stunned, overjoyed, grateful and so, so happy for the kids. To be able to combine the vacation experience with working had me very excited since I miss working so much. So, we planned our 10 day trip to Sardegna free of charge. We actually saved money going on vacation since we did not have our regular grocery bill during that time and other expenses. How many people can say the saved money by going on vacation? We left for Sardegna early on May 14 and returned home late on the 23rd. It was an absolutely amazing, beautiful, once in a lifetime experience and I truly cannot thank Erica enough for offering such an unforgettable time to our family, particularly my kids. We were extra happy that our other friends, Michelle and Cristiano and their son joined us on the Island as well. If you have not googled Sardegna yet go do it...we were at Capo Caccia...GORGEOUS.

In the time of our travel planning, Giovanni was doing awesome. He has remained healthy, with great counts, infection free and happy (accept on the hospital visit days when he revolts loudly). Liviana had been having her good days and bad days. I had mentioned how the bad days weighed on me so. I spoke with the neurologist here and they suggested putting her on a very light dose of a valium type drug. I had hoped for a straight muscle relaxant like Baclofen for her and took time to discuss the issue with them and Brad. I did not want something that would effect her mind...leaving her foggy during the day. They said the dose was VERY small...just a drop and that we could use it on an as needed basis. It did not have to be every day. The doctor noted that Livi does not have rigidity or spacisity and that she can relax her legs and body but because of all of the errant nerve impulses and everything else going on in her body she stays very tense and tight. In this case, their suggested prescribed drug would be good for her state of mind and relaxing. I just worried about a slippery slope. Once medication starts it leads to more, the body reacts, changes and then more drugs join the list. That was my fear. She has really done great without anything but I also want her to be comfortable and needless pain is never good of course. In the end I got the prescription...which by the way cost 1.89 Euro and we have used it sparingly...as needed on days she seems uncomfortable. It has been days since she last had a drop and they were rare before that. She is doing great. It is nice to have it though to help her through those days.

While we were in Sardegna, enjoying a day at the beach Liviana did have her first seizure. This was a quick slap back to reality for us. It was not a "bad" seizure...not grand mal. It was a reaction to a couple of bites of ice cream and the sudden cold when her body was warm/hot. It really was a big dose of reality. Seizures are a reality for MLD and it just reminded us what is going on in her little body. It really hit us hard mentally. We will get her an EEG when we get home if we thing it is necessary. She would not like the EEG process and since the seizures are really not unexpected with MLD I don't want to put her through it if it doesn't tell us something we don't already know.

Livi absolutely LOVED, LOVED the beach. All smiles, all happiness, all joy. She was so peaceful when we were there (every.single.day). She loved the sun, laughed absolutely hysterically when she sat at the shoreline with Brad or I and even had special little holes dug in the sand by Tarah so she could sit up and watch what her brothers and sister were doing. Giovanni was absolutely adorable at the beach. He loved playing in the sand with the bucket and dumping water out and quickly asking us to refill his bucket. He and Liviana were both in the sun a fraction of the time Aria and Miles were ( they rarely left the sun accept to go to bed) and they are both so, so dark. Aria and Miles got tan too but Giovanni and Livi are "Chocolate and Bronze" as the doctors called them upon our return. Aria is destined to live by the beach. The water was quite chilly but she was in it all the time. She loved every single second and I really can see her living by the sea someday. Miles was too adorable and made a friend in one of the Scuba (Sub) instructors who bandaged him up (twice) when he fell on the path to the beach. Miles would say his favorite part was the boat ride we took...it was AMAZING. I really cannot say enough how absolutely amazing this experience was for the kids and us. It is a place we would never have a chance to go and see and to have the chance on the tail end of this difficult trip to Milan is that big plateau we REALLY, really needed more than anyone could ever know. Oh...and I rocked the conference photo taking too :).

I took a TON of photographs while we were there but I haven't even had a chance to go through them all yet. I had two evenings of mini-sessions when we returned from Sardegna and I have been feverishly processing, processing so I can get everything done before we leave. Leave....yes, I said LEAVE.

I so wish I had a set flight plan to share with everyone but I am taking a really deep breath and biting my tongue and will simply say that the hospital has not finalized the plans yet. However, I can tell you that it will be this Thursday, Friday or Saturday that we return home to Omaha in the evening. I WILL get the final itinerary tomorrow during our visit with Giovanni (his FINAL blood draw this trip). He will go home without any indications or restrictions. He is so strong. We are anxious to see our Dr at home, who I have been told has contacted the doctors here to check on us. I suspect my lack of blog posting didn't help inform him of what was going on....sorry Dr. R and we will see you soon :)...I have a million questions for you.

I have a lot more to discuss about Giovanni's treatment, my fears, the potential outcomes, new people we have met here and a ton more. Our computer connection stinks and I have jumped through hoops tonight just to open my e-mail so my patience is frazzled and it is late so I will post everything else in another blog post. I am no longer making promises that I will post in X number of days though. If you do notice that I have not in a while then you know it one of those times we are taking some breaths on those plateaus away from the mountain climbing :). I will be posting more on Facebook though...I have done a poor job of that lately too. Something had to go for my sanity for a while and it ended up being the computer. I feel sane again though thanks to the beach air and idea of American soil in a few days.

Here are a very few photos I have processed so far. The beach and sand is really that color. The one of Aria and Miles is at Stintino Beach...google that :). My connection here is so bad that I can't even upload photos to Flickr right now so these are junky blogger uploads...sorry about the quality. When I get flickr working I will upload them in better quality and size. I have a ton to go through after I process the rest of my work related photos. I am thrilled that there is a family photo in the bunch too. I love my babies so much!

Hug Your Babies!

Amy











Now aren't those better than hospital pictures :).

Renewing, Smiling, Laughing, Loving

After what was a really rough week for me, I have found myself very refreshed and renewed and ready to move on past the issues that took me away from where my focus should be, and always has been.

I am really a private person. The reason for starting Liviana's Journey in late 2007 was to keep family and friends up to date on what was going on with Liviana since we were moving out of state for her medical care and birth. It has ended up being a resource and a help to other CDH parents and now MLD parents. Completely unexpectedly it has touched many, many other people. I always insist I am not doing anything that any other parent would not do when faced with the same thing with their children. I am not special...I am just a mom.


I am actually an introvert, which would surprise a lot of people. When I was in graduate school I had to take many personality assessments, since I needed to understand the instruments we may use. I was always 50/50 Introvert/Extrovert. I think that was a result of where I was in my life at the time that I even was 50/50. I needed some extroversion to be attending and presenting at conferences, teaching classes and working in a team with other people. I have no doubt if I took the same assessments right now I would have shifted clearly to introvert, which is my natural comfort area. That does not mean I do not like people, or socializing or groups. It simply means that I don't get my energy from being with other people but rather can get that energy from being alone and solitary. I think little people are excluded...they give me energy no matter what.

So, when all of this drama happened I really wanted to just fold it all up. I will always do what I am doing, the way I am doing it for my children whether everyone can read about it or not. I just questioned whether I needed to sharing so much with everyone since it opens you up to so much judgement, scrutiny and really, just plain old gossip. I don't think anyone ever wants to be talked about in a negative and untrue light but in a situation where all you are doing is going day to day hanging onto what you have with your babies it makes it feel like you are being kicked while you are down. I never even wanted our story to be made "public". I never sought out news stories or anything else....it makes me really uncomfortable. Good friends did what they could for us contacting those people because I never, ever would have and they were thinking more rationally about our needs than I was at the time. I appreciate all of them more than words could ever say and know they did what was best for us and our family...I don't ever want that to be misunderstood.

I am moving on now and going to return to what is important and what I have been focused on since the beginning.

I was so blessed to have met a local Milan woman, an American, married to an Italian man. We met on the expat board a couple of week ago when I was looking for help with Tarah's Visa issue. We got back in touch this weekend and they were so kind to invite all 7 of us over to her In-Laws house for Easter dinner. We were all like little kids, all giddy and excited that we would be going somewhere to be with other people for a traditional, Italian Easter. Michelle and her husband have a 3 year old son and the kids were so excited to have someone else to play with. It was really a wonderful, relaxing day focused on the family. It was something we all really, really needed. We are so grateful for the invite and for new friends. Almost all my socializing for the last 3 months has been with people in hospital masks. Even us introverts need to have a chance to spend time with other people. Thank you, thank you, thank you Michelle, Cristiano and family. You have given us so much more than you even know.

The "Easter Bunny" (AKA, Brad hunched over with a bad back) hid eggs in the courtyard early yesterday morning and the kids headed out for an egg hunt, complete with whatever basket like item they could find to carry their stash. I am sure the neighbors wondered what in the world we were doing out there. It reminded me of last years hunt and Liviana running around trying to collect eggs. It is hard to not reflect on the same time last year when everything was "normal". This year brought new, special joy though with all four together and lots and lots of smiles all around. Here are a few photos. I also have photos from our Easter dinner I will get posted soon too.











































































































































Today is still holiday and feels like a Sunday around here. It is referred to as Pasquette. The courtyard is a buzz of activity and you can smell BBQ grills going...a heavenly smell to us. It is going to be a good day.

Giovanni has a regular appointment tomorrow to check blood counts and Liviana will have a neurological evaluation because of her increasing muscle spasms. I will update when I can.

The Reality of Life in Milan

I think when most people think of Italy, and Milan, they get a romanticized vision of everything. Cobblestone streets, gorgeous architecture, stunning scenery, blue skies, shops galore, street side cafe's and walking hand in hand. It all sounds lovely and if you find a place like that let me know, because I could use a break.

That is far from the reality here and financially, I don't think anybody, unless they have had to up and MOVE (not visit, not travel through, not vacation) to a foreign country with 4 kids and 3 adults can begin to make assumptions about what it "should" be like for us here. In addition to the overwhelming fear of our daily lives when it comes to our children, we have had to navigate life in another country, where we don't know the language, where life simply does not resemble anything you know as life in Midwest America...or America at all. The US Dollar is barely worth the paper it is printed on here. And, if you did not realize, Milan is the 15th most expensive city for expats in the world. To put that in perspective...I know many in the midwest who would cringe if they had to move to New York City because of cost of living. New York City is 27th on the list.

I am not one to ever post much about what ISN'T great if it isn't necessary, like the trials faced with Giovanni's treatment. I don't like to complain, I try to focus on the positive. I didn't post about my locker being gone through at the hospital and then left unlocked for all of my stuff to be taken overnight. I did not post about the people in the building reporting us for not recycling properly because it was never explained to us that you need to separate EVERYTHING...even food or even where we were supposed to take it each day. I did not post about navigating around piles of dog poop on the sidewalks because few people pick it up here, or the big fight at the train station that was because of us and our stroller trying to get on the hospital train. The locals all came to our defense against the much disliked "transit man" who came out of his booth to confront them all when our train arrived (this was after a shouting match on the train with him over the loud speaker).

I know that those posts would make for a good read once in a while but unless I have a big reason to address something negative...a passion, a defense of my family, a concern for someone else...I won't usually focus much on that stuff with the public. Right now is one of those times I feel, as my family has been misrepresented and someone out there thinks that we are doing things here and living it up on donations and nothing could be farther from the truth. And, this again makes Mama Bear come out.

Before I get into the "exciting" details of our time here in Milan I did want to point out that we are currently waiting on a fraud investigation on our account. There is a charge for $1000 some odd dollars that is not ours. I do not know how long to expect the investigation to go on but we certainly hope that it will be resolved soon. We fell victims to this charge (which appeared once before and then disappeared) and I acted as quickly as possible with not way of actually phoning Wells Fargo from here to get the next steps to file a report. The report was filed by Jen Hendrickson in Omaha (who is also on the account) and we hope for a quick resolution for all of us affected by the charge.

Ok...picture this. We are 7 people, 4 kids and 3 adults, living in a 2 bedroom flat. Homes and apartments in America are quite palatial compared to homes in Milan. Except for the bathrooms here, things are quite small (they like big bathrooms). Those 7 people, have just 4 beds and my 6'9 husband is sleeping on a 6'0 cot (that he insists is shaped like a banana). This is likely the reason he has had his back out for the last week and limps around like Grandpa.. I feel bad for him but we tried to find different configurations for sleeping for a while and that was what worked best for everyone. Being the loving wife that I am, I reminded him that I slept in a baby crib for 60 days so he needed to learn to love his banana cot.

We moved to this flat, in a village outside of the city in Mid-February after living in a hotel with 7 people for a month. I say we, but in reality, it was Brad, Tarah, Aria, Miles and Liviana because I was in "the box" for 6 straight days as Giovanni started his chemotherapy. Remember when you were getting ready to start college and your mom took you to Target or Wal-mart to get everything for your room. All you had to start with was a bed, desk and very basic furniture items. That is pretty much what we faced except it is for 7 people. We needed towels, sheets, pillows, comforters, kitchen items like dish towels, bowels, cups, glasses, trash cans, brooms, mops, cleaning supplies, toiletries beyond the 3 oz. containers we had, plug converters, hangers, blankets and other small miscellaneous things. There were a few things in the kitchen, which helped but I had to get inventive when I made Lasagna last week when I realized we did not have a casserole type dish. With each day you realize more things you miss and need from home. We take for granted having a home full of things when we need them. The power has gone out several times at night...where are the candles and lighter until it is restored. We still don't even have a rack to hang our laundry that doesn't take 2 days for it to dry. That can back things up with 7 people and 4 kids who go through clothes quicker than we do. There aren't dryers here so people hang things outside. We will probably find one when it is close to time for us to leave. We have lightbulbs burned out in the flat and have yet to figure out where to buy them to match. There isn't an ACE hardware on the corner and what they have at the market isn't even remotely close to the same kind.

Being outside of Milan and not in the hotel anymore means that we have to take the train to the hospital. We can see the top of the hospital from our village train station but it is a 1/2 hour to 45 minute train ride one-way depending on the time of day and a 1 mile walk from our flat to the train station. In the month of March we turned in over 240Euro in train tickets for reimbursement and that was not all of them, as I had some in my bag as well...I would say with all of them it was probably slightly over 300Euro The hospital has not reimbursed us for those. Each time I left the hospital I waited on trains, switched trains and made my 1 mile walk back to the flat. For about 2 weeks those walks were in the rain. I know, I know..."I walked up hill in the snow when I was a kid"...my point is...that is life without a nice vehicle to jump into and go home.

Food....ahhh food. This is where most of all of our expenses go. I would say easily...93% of finances is on feeding all of us. Forget all about bulk shopping, going to the store every other week of even once a week. The culture here around grocery shopping is very far from America. Refrigerators are small and freezers even smaller. Meat expires usually the day you are buying it, as they don't "stock up" on food here to have for the week. You buy for each day or each two days. Our kids go through 7 -9 boxes of cereal a WEEK and 5 gallons of milk. When I first went to the market when we were living in the hotel I thought...WOW...this is cheap. It took me getting back and realizing the horror of the currency exchange to know that it is not cheap for us and when were at the hotel I was stocking a hotel sized tiny fridge. I added up in 14 days at the beginning of March we spent 320.91 Euro on groceries. That comes out to $469.00 US dollars. See....that hurts! There really is no choice though. I am the master of creative cooking with what I have but that is easier when you are in an established kitchen with a variety of items for random, not everyday use. I don't have the luxury of going to the store and getting all of those useful items. Not only would it not make sense to fully stock a kitchen we will be leaving in a little over a month but we have to walk to market. It is about 1/2 a mile away and we can only buy what we can pull home in our pull cart or carry. Another reason we have to go each day or every other day.

The grocery market is also closed 3 hours during the day, each day and closes for the night at 7pm and is not open on Sunday. When were still in the hotel we ran out of diapers on Sunday and had not learned the Italian system yet so Brad had to take a taxi 45 minutes away to the one open Sunday market for diapers. Again...don't take for granted being able to get whatever you want, when you want it in America.

We are reimbursed by the hospital for $500. That is all! Few people realize that and some that still do think that we still should be fine on that I guess. When we moved further away from the hospital we added the train expense that cuts into our food money even more. We have to wait and wait and wait on reimbursements and when we do get them they may or may not be correct....so we wait some more. We are currently waiting and it is bank holiday time because of Easter so no office workers from Thursday to Monday.

So..what if we want to head out and about. After all, we have yanked the kids out of school..which they loved and we want them to get something enriching out of this different cultural experience. Surely we are not expected to keep them in the flat all the time. We mostly, probably 98% of the time head out in the village to the local parks and "exploring" as Tarah and the kids call it. We have a few times, but mostly before Giovanni went into the hospital gone into the city to check things out and show the kids the sights. The last few times I came home when Giovanni was in the hospital for our day visits Brad and I took the kids down to some different museums, a natural food store I had hunted down for some non-toxic cleaner (I make no apologies for that) and another time to an open air market to find them some summer clothes (that was a MADHOUSE). Each time we go somewhere it is an 1.5 hour train experience ONE WAY to get there from the time we leave the house from the time we arrive at our destination. Each time we have gone out as a group, we know we will have to eat while we are out. We are far from home, out for hours and no matter what will run into a meal time with cranky, hungry kids and frankly us too after walking and walking and walking in the heat and sun. You may think...why can't you bring food with you? Well, in America, that would work great. Get a cooler (haven't seen one of those here), get some ice (this is Europe, they don't use or sell ice) and pack lunches. I am not sure the people crammed onto the train with us (so crammed we have had to let them go by because we could not all fit, let alone with a stroller) would appreciate a big cooler even if they did sell them and use them here along with the 4 kids, 3 adults and a stroller. I guess we could get ice trays...right?...haven't seen those either and the amount of trays it would take would not fit in our tiny freezer that is divided into drawers. So...we stop at a pizzeria to feed the hungry troops. The prices seem great and cheap but then we realize again the American dollar is the crapper and they don't seem so great anymore. Although...I will admit the quality of food beats the US anytime.

We found out on January 7th that we were indeed accepted to come to Milan and they wanted us here on the 12th. It was an absolute frenzy. I was trying to wrap things up with my business, Aria was in school and we had to ALL go to Minneapolis to get our passports plus we had company from out of state with us that weekend, two days before we left. Packing for 5 months happened the day and night before we left. One checked back per person for 5 months and two seasons. I could have done a better job packing. I managed to pack myself one pair of boots and I wore another pair of boots for the trip...not good thinking. Aria had two pairs of pants (one she has outgrown) because she is a skirt/dress girl plus she wears uniforms during the day. Miles has outgrown two of his pairs of jeans since we arrived, one of them were bought in December and several of his shirts are now cropped tops. They have all grown in 4 months. Liviana's belly is usually hanging out because her shirts are too small and they are all long sleeved. Giovanni..well, he is a giant for his age and most of his pants are high waters. None of the kids have shorts or summer clothes, which is what season we are in here and it feels like it.

I hate that I have to feel guilty for trying to keep my kids clothed and not sweating. I would have to do the same thing if I were at home though. They would need shoes because their summer shoes from last year don't fit them anymore, they would still have outgrown their clothes. I do have clothes for Giovanni and Liviana at home from their siblings outgrown stacks but in those 5 days we had to get ready to leave I failed to remember to get them out and go through them for the season change and if I had it would have put us over our bag limit and cost us an arm and a leg at the airport. I am not one to buy things for myself and what I have bought has been from cheap street markets (summer tops for 8 Euro) or from knock off stores for cheapo. They were just to keep me out of sweaters during those walks in the sun and warm weather and...not to throw Tarah under the bus (she knows I love her) but her laundry skills have turned many of my clothes different colors and two things are now Aria's because they shrunk into tiny tops. Love you Tarah.

Let's see....have I bored you enough? We are boring...we aren't living it up. Brad and I have not spent time alone since early February except for a few walks to the market in the last week. We don't "go out", we don't do fun things accept with and for the kids. If anyone doubts this they can ask our babysitter. About 4 times a week we walk over to the gelato place with the kids. That is one thing that IS cheaper. We get them all a cone or cup of gelato for about 7 Euro. It is double that at home at the e-creamery by our house. They enjoy the simple things and that is pretty much all we have done with them.

I wish it was all more exciting and I wish we were not here for the reasons we are. We have put Giovanni through a life changing experience for more than one reason, we have watched Liviana decline, yet still smile and we have watched Aria and Miles miss home so much that they have stood at the train station in front of a ton of people and yelled, "Train to Omaha Please"....it was embarrassing but we all agreed with them.

We don't want to be here, we don't even want to ever come back here but we know we have to. We have not partied accept Valentines day with homemade signs, Brad's birthday with homemade signs and the day Giovanni came home. We have spent money on things we mostly needed for the kids, mostly food and a few other things....I have stacks and stacks of receipts if anyone really is THAT bored.

We have photos to take today so I must run. I spotted an awesome spot in town while were on a little free "train" ride during a festival last weekend. Liviana is having an AWESOME day and those are the things I should really be focusing on. See...this is why I don't like to focus on all these details of the reality of our life here. The kids are so, so much more important and it is unfortunate that my attention has been taken away from them to deal with too many questioning people. It is an open book. We save almost all of our receipts for anyone bored enough to go through them when we get home.

Enjoy your weekend. Buona Pasqua!

Hug Your Babies!

Reflecting

These last couple of days have been a challenge for Liviana. I knew these days would begin soon...but I wasn't ready. Yesterday, most of the day she could not get comfortable at all and cried and whimpered on and off most of the day. She would have jerking, flailing motions throughout her whole body. We realized they were muscle spasms and they have been increasing. It is heartbreaking to watch. We try to keep her comfortable and I held her much of the day and even her sunbathing out on the balcony did not make her happy...it is usually a favorite of hers. I attempted twice to give her some pain reliever and it was a very challenging experience with LOTS of tears.

There have been lots of conversations where we have been told that a g-tube will be the best decision we could make. Liviana LOVES to eat. She makes requests, she devours almost everything you put in front of her. It is one of the last things she loves so much and she can still do (with some assistance). I did not want to take that from her. I realize though that given the increasing pain she is having with muscular and nerve issues and the difficulty getting medication into her that we may need to consider the option but still allow her to eat as she pleases daily by mouth. Sending her into surgery is scary. Her body seems so fragile these days and I don't want her to be in any more pain than the damn MLD is already causing her. We will likely wait until we get back to the states, which is promised to us to be the end of May. We will see though if that decision needs to change. I brought her magnesium supplement with me from the states (good thing since you can't get supplements here) and she chugged her water today with it added and we all can see a much calmer little body. Let's hope this can help her until we can get home.

I mentioned to someone on the MLD board that I feel like her Congenital Diaphragmatic Hernia was one big, "Ha, ha, Gotcha". I remember this moment so clearly.


This was the first time I held Liviana on her 14th day of life. I remember tears falling down my cheek onto her head as I thanked God for getting us to that point and for allowing us to keep her in our lives with our family. After carrying her for 18 weeks of the pregnancy, not knowing if she would live, this moment was took my breathe away but made me hold it in at the same time, so as not to forget the feeling of the experience.

It is hard to wrap my head around going through that, knowing she survived, thrived and looking in that face with thanks each day and then having this nasty, horrific, MLD start slowly taking her from us. An insightful woman on the MLD forum, named Susan said that maybe Liviana survived to save Giovanni. So true...and I will hang onto that.

This afternoon she has had a better few hours. She enjoyed her sunbathing on the balcony, devoured 3 pieces of pizza and has not had as many spasm issues though they are still present.

She had a nice bath which I think helped too. I wanted to take her somewhere to put her toes in the sand, water and feel the sun but I don't think that will happen. I hope when it does she can still see and hear the water and know she is someplace special.

Buona Notte

Hug Your Babies!

Amy

*Happy Dance at the Casa*

I am so glad to not have to number the days anymore :). On Day 60 (last Tuesday), Giovanni was released from the hospital and came home to laughter, smiles, hugs and joy. He was slightly overwhelmed and tired since he refused to nap that morning amidst all the bag packing in the room. I feel bad that I have not posted since then but I have really been enjoying life with my 4 babies faces all around me (ok, 6 if you count Brad and Tarah). The happiness of having all my kidlets together, seeing Giovanni playing with his brother and sisters, making dinner for the family, not having to leave and head for the hospital at night and just smiling and laughing have kept me busy. I really felt like I had won the happiness lottery when we walked in the door.

Prior to coming home we worried about Giovanni having to relearn walking. He had 5 or so days in the hospital prior to leaving where he as able to walk around in the room and get used to it all again. He had spent the last 60 days in a soft crib walking back and forth and to use Tarah's analogy...it is like being on a trampoline for 60 days and then getting off and trying to walk on the hard ground. He was a little unsteady but really, has impressed me with how quickly he got right back to it. Since coming home I have noticed he has a noticeable hyperextension in his right leg that was not noticeable before his hospitalization. This makes me very anxious since the leg issues are one of the first thing we noticed about Liviana. It is really much too early for him to have onset so I am unsure if this is related to MLD, the hospitalization, normal, or what. He has bi-weekly appointments and the next time he sees the neurologist I plan to ask about his legs.

Giovanni seems to have a special attachment to Liviana. He saw her photo on the desktop of the computer at the hospital often and would always point and chat with her. When he came home and started exploring the room one of the first things he did was bring a balloon over to Liviana. That night he brought things over to her on the couch. I always told Liviana when I was pregnant with Giovanni that she would soon have a special buddy. Aria and Miles are so close (despite Miles being closer in age to Liviana) and she was often my playmate while Aria and Miles played. They share a bond that goes beyond what any of us can see and it seems to me sometimes that they know this as well.

The first night home I got in bed, snuggled between Liviana and Giovanni. It brought me joy and a fleeting moment of peace that I relished. I lost that complete feeling of peace on November 17th when we were told Liviana had Leukodystrophy. I know I will never have that feeling of taking a deep breath and feeling all stress and worry wash away...that complete peace feeling. Even when things are great, smiling, laughter I always carry with me, in my mind, the knowledge of what we are facing and what the future holds for our babies. With Giovanni it is an anxiety that hangs over me as I wait for signs to not show up, maybe show up, show up later...who knows. The uncertainty combined with the certainty of MLD is all so ambiguous.

Giovanni had been having a great week and Saturday night he had a very, very restless sleep followed by vomiting at about 4am. I got up with him and held him in my arms as he slept in little 30 minute stretches before getting restless again and throwing up 3 more times with the last being around 8am. After that time he got up, started walking around,playing, wanting to eat and acted like nothing had ever happened. I went from total fear of what was wrong with him, did he get some errant bacteria from some food, did he have a virus, etc. to watching him play like normal and realizing it was a very isolated situation. I contacted the doctors in the morning, just in case and since he was acting fine and never had a fever they took the watch and see approach, which made sense to me. As of today he has been completely fine and never got sick again.

Thursday we took Giovanni for his first outpatient appointment. He had a blood draw and the general physical check. His counts showed that his neutrophils were 1500, which is awesome. We were all very pleased!

On Friday we had the joy (insert sarcasm)of going to the immigration office at the police station to file Permesso Di Soggiorno (Permission to Stay) paperwork since our 90 days had expired. We knew nothing of this until we were leaving the hospital on Tuesday and were told to go by the secretary's office first. The told us the paperwork we needed (photos, passports, tax stamps) and that they had made an appointment with the head secretary since it is usually an all day wait and that was not a good place for Giovanni to spend the day (we all had to be present). We also were told that Tarah would likely not be granted permission to stay since they did not understand/recognize the need for her to be here. It was very clear to us that they already knew that a visa for her would not happen when they told us not to even bother getting a tax stamp for her (we did anyway).

At the office we were met by Cruella de Ville who clearly needed an injection of happiness in her life. We sat at her desk as she shuffled through our paperwork demanding things we knew had been faxed and tossing Tarah's paperwork aside. This was after the kids walked in when she said she was ready and she barked, "No Children" and they were sent back out to the hall. I am not sure at this point why we had to haul them all down there then. In the end, Tarah was not given a Permesso Di Soggiorno and is essentially here now illegally. We are NOT happy and Brad went to the hospital this morning to discuss the issue (among other things like not getting all of our reimbursements) and find out what they intend to do about it since they never told us this was an issue and it is a HUGE issue to us. In the mean time, Brad, the kids and I are officially immigrants and Tarah must steer clear of the Polizia for fear of deportation. We will try to keep her in line :). It is not like we are here on a vacation....they have us on a medical visa so they know the situation. Very frustrating.

The weather has been beautiful here. We have been very blessed with sun and great temperatures pretty much non-stop. When there is rain it usually gets cloudy, rains very lightly and then the sun quickly returns. Our first evening home, as we sat to dinner with the large patio doors open, some rumbles of thunder could be heard and the wind (which is very rare here) picked up. We had a little, brief shower that reminds me of living in a tropical location, followed by the sun coming back out. It was a perfect evening for our first night home...I truly loved it.

Sweet, sweet Liviana. It is hard to know how much of her life I missed in the 60 days Giovanni was in the hospital. 60 days is a long time in an little MLD life. It is harder and harder for her to do simple things. She is still eating fabulously. She LOVES food, makes requests and eats really well quantity and nutrition wise. She can hardly feed herself anymore though. Her little hands shake too much and don't move easily anymore and she has a hard time gripping and holding things. We feed her or we make things a size that she can handle easily but she still often has a hard time with her hands. Her legs are straight and stiff most of the time and days but then she will have a day like yesterday where she will have them bent most of the day and do absolutely great. I wish I could bottle whatever it is that gives her good days. She can't sit without support anymore. We have to hold her or have something behind her. She used to be able to sit if she bent her legs but even if she bends them it is like a spring that pops back into place. We have kept her abs and back strong with little situps that she loves doing but it doesn't seem to help her core strength to help her sit by herself anymore. She has abs of steel though :). She still smiles, laughs and what absolutely melts my heart and brings me those fleeting moments of peace...she cuddles. It is HARD for her to cuddle. Her little body is stiff, she has nerve reflexes and spasms and she can't bend her legs easily to sink into you like another child would. However, a few times lately, I have held her and she has sunk her head down, tucked her little arm underneath her, like she always used to do, and snuggled in with me. One day was a few weekends ago while we were finishing up lunch at a restaurant. Brad took Aria to the restroom and it was Miles, Liviana and I. She was really uncomfortable on my lap and didn't want to eat anymore so I turned her towards me to hold. Her legs were straight down in front of my seat...not a position you would think was comfortable. She, however seemed to just melt into me and she laid her sweet little head on my shoulder and snuggled her face into my neck and I felt close my eyes and squeezed them tight because it started to bring tears to my eyes. It was so great to know she was feeling that much comfort and peace. I asked her if she liked cuddling with mama...she slowly said...uhhhh-huhhhhh. Miles suddenly, at the same time said, "I don't want Liviana to become an angel...I want her to stay here with us..Does she have to become an angel". I did not even know how to respond. They love their sister so much and it makes me sad to know the pain they will feel one day...the pain they already feel. Aria has grown very attached to her. That day and each other day I was home (this was before G was out of the hospital), if we were out, Aria would hold Liviana's hand the entire time. On the train, she held her hand non-stop and played with her, entertaining her and making her smile and laugh. She is such a good big sister.

Week before last we had to get her something for constipation. It is a very common MLD problem and I believe unrelated to diet, fluid intake like it is for everyone else (correct me if I am wrong MLD parents). It was one of the first odd things that happened last May, almost a year ago when we first saw MLD onset in Liviana. She will have horrible, long...sometimes hour long screaming and crying sessions. It is once a week, sometimes every couple of weeks. It is hard to see and hard to not be able to instantly just take the pain away for her. The medication they offered had its own horrible list of side effects that would regularly cause her more problems than the weekly or every two week bout of constipation. We are going with suppositories for more immediate relief without the side effects. We have only had to use them once so far and when we get home I will look into other options that are not as hard on her little system.

We will soon have her eyes and hearing tested here. I am worried about the results. Blindness and/or deafness are both an unfortunate part of MLD. She has started having wandering eyes where they won't stay in line and looking in the same direction (pardon my lack of official medical terminology). She also has started grabbing holding her ears and pressing. It is not like she has pain but almost like when you have water in your ears or they are popping and you are trying to correct it. I wonder if she does it because she has ringing or can't hear well. It is so hard for her not to be able to answer me when I ask what is wrong. She can still talk but it is usually repeating what we say or basic things like, Hi, All Done, G-mawnie :), Mommy, Daddy, Aria, etc. Ahhhh...I watch her sleep, with her little hand tucked under her cheek. That too brings me those fleeting moments of peace. She is pure perfection. I don't care what she has.

I feel like this has turned into a novel again. That is what I get for blogging only once a week. I do update more on Facebook because it is easy for quick and easy updates. If you are not a friend you can send me a request if you would like. I tried to add a widget on the blog that would show my status update but it did not work..I will try again soon.

Don't forget about Mom Prom on the 22nd. I really, really wish I could be there to meet all of these fabulous women. The website can be found HERE.

Here are 3 photos I took last week. The first is my two beautiful girls at the park the day before Giovanni came home. The second is G, hours before leaving his room, AKA, The Box, for the last time and the last is our first dinner all together as a family that night. It was a wonderful night we will not ever forget.


Hug Your Babies!

Day 59: Freedom for Giovanni Tomorrow!

They are releasing Giovanni tomorrow. His counts have been great, his platelets are at normal levels and his Neutrophils are at 970. He is getting a little boost of Hemoglobin today, as his has been running just above their transfusion cut off. They said they are not worried though and believe it is from the daily blood draws.

We are so, so, so thrilled. I truly cannot imagine not living here anymore. It will be 60 day and 59 nights tomorrow. He is a strong, amazing little boy who inspires me with his ability to keep smiling while being stuck in the box. He indeed kept the smile on my face each day. In these last few days as he has noticed me pulling my mask down more he has started waking me up by pulling my mask down and giving me a big kiss with his little cheek smashed up against mine. It really makes my heart skip with such love and cuteness!

I apologize that this is a short post. I have SO much to tell you all about including our Romanian Market experience two weekends ago, My sweet, nurturing kids, Liviana's cuddling, The crazy Milan market and much more. It also took some great photos today of Aria, Miles and Liviana that I will try to get to in the next couple of days.

I am tired (mostly emotionally probably) and want to feel rested for the big day tomorrow. I have been told release time is 2pm...7am CDT. EEEEEEKKKKKKKKKKKKKK! We are short a bed and Brad had a whirlwind fiasco trying to get one at Ikea...another long story.

I will blog in the next couple of days when we are home. I am hoping that I will be able to load video of the homecoming. I have had problems downloading and uploading videos so I hope it all works out this time so we can share the big day.

My family is going to all be together! It brings me such joy! The peace will come tomorrow when I look at all four faces together and take a deep breath.

Hug Your Babies!