My apologies (again) for not posting for so long. First and foremost I wanted to let everyone know that on December 21st we found out that Adelina is completely unaffected by MLD. She isn't even a carrier! We were so completely overjoyed with the news. Brad was out of town at the time and I called and said, "We got Adelina's test results"...his voice cracked as he said, "Oh No"...I told him "she is unaffected, not even a carrier". I heard such a tone of joy and happiness in him I have not heard in so long. I felt like I had one the lottery accept a million times better than the lottery. It was life we had one for one of our children. I have reread the e-mail with her results dozens of times. I do not think we had any idea how much the fear was consuming us until we knew she was healthy. I caught myself or some time, and still do, forgetting that we get to see her grow up. That is SUCH a simple thing we all expect when we get pregnant and give birth but it has not been a reality we have known with two of our kids. She is a chuncky,beautiful girl. She is happy and sweet and smiley. She loves Aria and Miles, she laughs out loud at Giovanni and her and Liviana have had some of the most amazing little "chats" that absolutely melt my heart. I have no doubt that she was an amazing gift from above at at time that we needed all the light and love we could get.
Gosh, since my last post we have had Thanksgiving, Christmas, a new year and birthdays. I had anticipated the holidays being a difficult time for us since it coincided with when everything in our world changed a year prior. I ended up being completely wrong. I thought the holidays were wonderful. We had my brother, his wife and their new daughter and my mom here for Thanksgiving. We ate good food, drank wine, smiled, laughed and enjoyed a house full of kids. We went to my sister-in-laws hometown in Kansas for their daughter's baptism which meant seeing people I haven't seen forever and more smiles and laughter. Aria turned 7, we had cupcakes and gifts and she had two friends over the day before Thanksgiving.
The winter has been unseasonably warm which has really helped my mental state this year. The sun and warmer temps are in sharp contrast to the snow covered ground last year as we dealt with MLD and our preparation to leave for Italy. The kids and I were even able to get outside and play in the last 2 months...in January...in Nebraska. To be able to take Liviana outside for sun and fresh air was such a blessing. She gets so excited when I bring her taxi (AKA, stroller) in and tell her we are going outside. Just yesterday it was 69 degrees...Amazing!
I can picture Liviana enjoying the holiday season right along side Aria, Miles and G. I remember when she was almost 2 and our Christmas tree had to be decorated only half way up because Liviana would "undecorate" the entire thing. As the kids decorated I sat on the couch and for a brief moment I could see Liviana hanging ornaments...tall with her curly hair and a sweet dress. I smile the instant I have the thought but then I have to wipe it from my mind or else it turns to sadness...I prefer the brief, sweet image to stay. She was the one who got to pick out our tree this year. We went when we knew it would not be too busy. She got to see the horses and Christmas lights out at Santa's Woods. Our sitter and friend, Annie came with us to help with the tornado G will Brad and I had our arms full with Liviana and Adelina. We totally are like the Griswolds when we go places :).
Christmas was also wonderful for our family. First, my mom visited, then my brother and his family visited again. Liviana loves being able to see everyone. She does get a little overhwelmed with activity at times. Christmas day we had to give her a PRN med because her little muscles started spasming and she just needed a little down time to recover. Brad and I both find Christmas shopping for Liviana to be an emotional experience. All of the kids needed clothes and that was really mainly what they got from us this year. Thankfully, they all seem to like getting new pants or shirts so it is a win-win for everyone. I love picking out things for Liviana. I get her mostly stretchy pants since she has to sit or lay down all day. I figure they are more comfortable than a thicker pant. Unfortunately, most of Aria's old pants were jeans or stiffer material that aren't very comfortable for Livi. Aria also had a lot of sweaters and Liviana overheats very easily so I try to not put her in sweaters often. Even though I can still pick out cute new tops and pants I still get so sad. When you look for clothes for your kids you picture them, well...walking, standing, running in the yard. I do at least...I always picture them standing in the outfit. It is hard to think of what you are missing and the harsh reminder of that when you are doing something as simple as picking out a new dress for your daughter. She loves dresses. Every single day she would put on a dress and then another, and then another until the floor by her closet had turned into a pile of temporarily discarded dresses waiting for the next day's fashion show. I have to consider if it will work with her feeding tube, will it be comfortable for her to sit on all day. In the end I got her mostly pants and shirts but her Aunt Crissi got her a beautiful purple dress that she got to wear for her birthday party.
Toys...a no-brainer for an almost 4-year-old turns into another difficult experience. Brad and I wandered the aisles trying to find something for a child who can't use her arms or legs, can't hold her head up, can't talk. We would pass each other in the aisles and neither of us would speak. I know he was thinking the same thing I was as my eyes were welling up with tears. I remember picking out her baby accessories just two years prior. She loved to dress them, put diapers on them, carry them in a "sling", put them in their bed. Books...books are always good. She loves when we read to her. We also thought of things she can visually watch and a vibrating pillow for her legs. She has had headphones for a while because she likes to listen to music but we could not find any that fit well so we got her some new headphones, a microphone she can make noise into and play it back. She had a wonderful Christmas and in true Liviana fashion, I think she liked the clothes best :).
Giovanni is a little tornado during the day but he seems to gravitate and love all things domestic so we got him a little kitchen of his own that has its own space in our kitchen. He also got a vacuum that looks just like our Dyson from my mom (Dooda). If he was old enough to actually vacuum, do dishes and cook effectively I would have my very own built in Alice (from the Brady Bunch :)). He likes his clothes too. He is just like Liviana and changes his clothes dozens of times a day but somehow always is pantless when company visits. Pantless with his shoes on...that is G.
The new year of 2012 brought...sleep. Let's face it, when you are parents to 5 little ones you are generally in bed at the stroke of midnight. The kids were upset they missed the celebrations so the day after New Years Eve we put up streamers and blew up balloons and had a mini-celebration. In 2012 I pray for miracles for Liviana and Giovanni.
The next big day was Liviana and Giovanni's birthday. Livi was turning 4 on January 18th and Giovanni was turning 2 on January 16th. Their little lives are so tied together. I can't thank all of the wonderful people enough who came out to celebrate their birthdays. I know Liviana can't say it herself but I know she loved seeing people come and wish her well and talk to her. I could see it in her face. We stretched the day out over several hours and had an "open house" type of format so she would not get too overwhelmed. When I made her meal that day for her feed pump I told her I put a cookie in just for her...and I did. Why should she not get a cookie for her birthday just because she can't eat it by mouth :). I would have added a slice of carrot cake but she seems to have issues with dairy and the cream cheese icing may have been to much for her. You can see by the photos below the happiness she has on her face. I adore the photo of Brad and Liviana...it will be getting printed :).
Next up was my anxious anticipation waiting for the flight arrangements for Brad and Giovanni. Yes, they were heading to Italy for Giovanni's 1 year follow up. In fact...that is where they are as I type this. To say I miss Giovanni is a gross understatement. I gave birth to him a little over 2 years ago and have never been away from him outside of normal activities like working or when I had my every other day, 8 hour "visitation" with the other 3 kids while in Italy. I was by his side through the surgery, chemotherapy, treatment, etc. I slept with him in a tiny crib at night and woke up with him at 5:30 when they came and took blood from his port and again at 7am when the cranky housekeeper stormed in to clean the floors. This has been so hard but I am eternally grateful for Brad and his strength, love and dedication. G is in good hands. Our friend, Jason went along with him for moral support and to give Giovanni the benefit of two awesome dads.
The last few months have been very difficult for my sweet G. He screams and cries in pain at night. His hands and feet hurt which I am positive is the peripheral neuropathy we also saw in Liviana starting around the same time, only slightly later. Their behavior is identical accept G screams more. He tries to shove his hands and feet under whoever is sleeping by him. He raises his leg in the air and shakes it violently, he screams and cries and it breaks my heart. I lay there away trying to console him. I try to rub his feet, which sometimes helps but other times makes him recoil...he pulls away in more pain more often than not. I have tried all I can to help him. I started giving him his B12 at night before bed and I started using first, Frankincense oil and then St. John's Wort Oil on his extremities before bed. For 2 weeks we saw a HUGE improvement and then it was back to how it was before. I have spoken with our doctor here at length. A pharmaceutical drug would be the next step although I have not exhausted all of my other natural options first. The benefit we have seen with the oil has been fabulous although not always consistent so I persevere trying to determine what is best for him and if that ends up being neurontin then that is what will do. I have woken up in the mornings feeling nauseous with my stomach in knots about seeing Giovanni walk down the same road as Liviana. I really can't even put into words the pain that causes me heart. To already know what he "may" face and not know exactly what he will face could easily break me. Seeing him tear around the corner with is vacuum though snaps me out of that and I try to face only what I have before me.
I don't have a whole lot of details from his testing so far in Italy. He has had his MRI though and tomorrow is his nerve conduction test...both very telling along with the obvious bone marrow aspirate results and cerebral spinal fluid results. My sweet, sweet boy. Just like Liviana, I wish everyone could spend a day with G.
The trip to Italy has been made much, much easier thanks to our wonderful friends over there. Michelle and Cristiano, Erica and Stefano, Rose, Antonino and D....all such blessings to us. It makes me smile knowing that G is getting love and hugs while he is there and not just daily hospital rounds. I miss you all and hope I will see you soon, although I will admit to not missing Milan or the hospital. G and Brad will be home late Saturday night around 10pm. I Can.Not.Wait!
Here are some photos of Giovanni from January 12th...I think it was 60 degrees that day. The doll in his hands is his baby..."Gee"...she goes everywhere he goes and it shows on her...I hope she doesn't fall apart one day. If you have ever seen a doll like this let me know so we can have a back up "Gee".
Aria and Miles are doing great. I am afraid though that they are going to get spring fever and we are going to still get a full winter ahead of us. I can't wait for soccer to start again and to be able to get out with the whole family. We are walking distance to the school and I look forward to loading up Liviana and G in the stroller and heading over to get them from school. The air and sunshine are so good for the spirit.
Miles is such a loving and sweet boy. Brad took him to lunch one day after school and Miles suddenly said, "I miss playing with Liviana". He then went on to say that he remembered playing with her and wanted to be able to play with her again. Brad gave him suggestions for how he can sit with her and play cars on her lap or read books with her. My heart aches and I get a lump in my throat thinking of them losing their sister. When ever they are drawing or doing crafts Aria always makes something for Liviana and puts it on her lap. She made a book for her where she had to find the hidden picture...it was so cute. Miles wants her next to him at the dinner table and loves to make her laugh. Her laugh is so amazing to hear...we are blessed to still hear it. Today I called Liviana an angel and Miles got upset...."She is not an angel, she is a person here with us". It reminds me of the conversation in Italy when he suddenly told me he didn't want her to become an angel, he wanted her to stay with us. No child should have to go through what Aria and Miles are along side their siblings. Right now he is making a house for Giovanni to play with when he gets home from Italy out of a box. He had also been looking at pictures of him on my old cell phone. Much to much for a little person to have to face.
All of our kids are such a blessing. Brad and I had a conversation one morning about how each of them were placed here at just the right time knowing what the future held. I can't imagine not having the joy of Aria and Miles and just facing MLD in our lives. I can't imagine not having Adelina to bring light where there was sadness and I can't imagine not having Liviana and Giovanni for the monumental life lessons they show to so many. Not matter what we face with the kids we are truly blessed each day. I never have a pity party or feel sorry for myself....how can I when I have these sweet faces to look at each day.
I have found through all of this that I really don't like to be alone. I am still somewhat of an introvert but I don't like alone, "me" time. The concept of women proclaiming the need for "me" time eludes me. Each time I have had a chance to run an errand on my own to the grocery store or target I can't get back fast enough. Being alone with my own thoughts is not a good thing. I don't know that I have ever left the house by myself on an errand and not ended up crying in the car because I had the down time to think of Liviana and my fears for Giovanni. My fears for Giovanni have been weighing so heavy on my mind so on many of those outings I like to take Aria, Miles or G so I have someone to talk to and keep me focused on the present. That is the gift they give me each day.
It has taken me a cumulative of about 6 hours to get this blog post done. Even with Giovanni gone I have 2, then 3, then 4 kids home after school to take care of, feed, love, change, love, kiss, love...blog posts get pushed to the side. I will, I will, I will try to get better. Brad has the laptop with him in Italy so I will try to use it more and get blog posts done at night as our evenings wind down. I really do want to keep everyone up to date and share to some extent but I struggle with that taking away from my time with the kids. I have the same struggle with my business each day...that is another whole blog.
Love to you all. Thank you a million times to our friends on both sides of the world. Annie, you have been priceless this week!
Hug Your Babies!
Pain in her Side.
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