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!
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