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!
Now aren't those better than hospital pictures :).
Check up DAY!
1 month ago