Monday, April 25, 2011

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.

Friday, April 22, 2011

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!

Thursday, April 21, 2011

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

Monday, April 18, 2011

*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!



Monday, April 11, 2011

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!