Well although Lillyanna is certainly full of love, she is also full of something else right now. We ended up having to go over to AI today for bloodowork and X-rays. Lil bowels show "Nonobstructed, moderate to marked amount of stool." Which basically means she is full of poop. I looked at the X-ray and could see that she was backed up to her stomach. I would be vomiting a lot too! So we need to clean her out. We can try to do it at home (thank you God) but Dr. R said "cover everything in plastic". Well, we have been drowning in vomit for so long; same thing different medium! My biggest concern is making sure she drinks all of the laxative, she is not really big on ingesting. Her blood work looks good so we can continue to decrease the steroids and begin to take her off of them. This is very good news. She has been on steroids almost constantly for about 9 months. No one really knows what that is doing to her little developing body. So that will be my weekend:) I will keep everyone updated (but not too many details).
I just have no idea what is happening right now. Lil's vomiting has increased tenfold. I mean literally, she has vomited 10 times today and I am just now putting her to bed
so who knows how that number will grow. To follow suit, Lil is not following suit. With all this vomiting, she is trying to eat and drink, something that was a joke last month. Chris said she was throwing up while trying to put food in her mouth at dinner. Stomach virus? Possibly. Just too easy an answer if you ask me especially with the constipation issues we have been having and her history. Her lesions look good but she keeps saying they hurt. For now, we wait and see. Oh...and clean up a ton of vomit.
PS- for Jason: Good-bye Maamaa. You were a special lady who helped to raise a very special man. We love you Jason.
I have such a love/hate relationship with my iPhone.
I hate that it sucks me in when I should be paying more attention to my kids. I love that it helps me stay connected with people who are important to me. I love that I can take pictures of virtually anything I want to whenever I want to. I hate that I am tempted to post them to facebook. I hate having to make sure the thing is charged. I love that I can answer just about any question those twins can think of in seconds.
I hate that I now bring it in the bathroom with me instead of a book for my 'private time'. I love that as I sit in Lil's room for hours at night waiting for her to throw up or waiting for her not to throw up I can do just about anything I want: shop, play Angry Birds,talk to friends and family via text, research information.... For the past few nights, I have been in there until about nine or ten o'clock at night as LillyAnna's vomiting has increased. I wish I knew why. I thought the Humira would help. Her lesions look pretty good (they have their swollen and red periods but no pustules). She has been extremely constipated so that could be part of the problem, her stomach is like a slow draining sink and any back up will require some special talent. Thanks to Dr. R I think we have unclogged the pipes so maybe tonight will get better. I wonder if God is getting tired of hearing that prayer every day. Maybe I should switch it up. I do thank him that we are not in-patient, that I no longer have to do dressing changes, that I have a happy baby and healthy family; but my washing machine and I are hoping for a vomit break too.
So many things happened this weekend; some wonderful and some awful so I will make this brief in the hopes of getting some sleep! LillyAnna is still throwing up each night. Until today her lesions looked great. For some reason, God only knows, they looked slightly puffy and red today. I was expecting the Humira to give us about a week of calm lesions and maybe even a vomit break but no such luck. She is also having some serious constipation issues (think of Thing from Fantastic Four trying to escape through her butt- poor Lil!) despite an increase in Miralax. I have no idea what that is about but I am wondering if it is contributing to the continued vomit. Hoping to see Dr. R if this continues but if nothing else just to check in. He is good like that, he supports me in my "enthusiasm" when it comes to Lil:)
When LillyAnna will only eat one slice of American Cheese in a twenty four hour period, I remind myself that she can eat unlike my cousin who up until two months ago only used a feeding tube.
When LillyAnna throws up at night I think of the many kids at AI who throw up all day.
When LillyAnna takes this medicine as one of her doses per day, I remind myself of a friend of ours whose IV tower has about 10 pumps attached to it on a daily basis and on bad days needs two IV towers.
When LillyAnna cries out and grabs her 'booboo' as she is walking, I think about the kids I see who are in wheelchairs and will never walk.
When I think about the idea that this could have happened to my daughter Antoinette (AKA Cybil, Drama Queen, The Princess and the Pea...), I am thankful for LillyAnna's high tolerance for pain, ridiculously positive attitude and infectious energy.
I am very hard on myself sometimes. Last night when I finally sat down to dinner at 10pm after starting her bedtime routine at 7pm because LillyAnna was choking and gagging for two hours and then finally threw up, I felt so awful. I just don't know how else to describe it. I remind myself of all of these things but it just does not get me out of the doldrums. Then I feel guilty because I have so much for which to be thankful. Like that fact that I get to hear my baby's laughter when so many children's laughter has died right along with them. I would think that almost everyone has these nights. The nights you yell at your kids and then feel awful or when you saw your ex and said something you know you shouldn't have or when you experienced something that is laying across your soul like the heaviest blanket and you just can't wait to fall asleep simply so that you do not have to think about it anymore. And you know your blessings but they are buried under your sadness and exhaustion. It is good to keep things in perspective but it is also ok to feel sorry for yourself sometimes. An old friend of mine, Mary, once told me that she allows a ten minute 'feel sorry for myself' period a day. When that 10 minutes is up, that is all you get. No matter what is happening in your life, it is real and difficult to deal with even if it is not as bad as what someone else is dealing with. So I follow a simple mantra; as Dorey says, "Just keep swimming..."
LillyAnna helping me clean up her vomit last night.
After the Great Pustule Popping Incident, that darn pustule went away. Imagine that! It is my opinion that Lil is cutting two teeth this week and her disease is acting up in repsonse to that. Before lapsing on the Humira for two weeks over a month ago, Lil was following a pattern of her disease acting up on day 10 and then calming down again with the Humira. We will have to wait and see if that happens again. Today's blood work looked almost exactly as it did last week which is good enough for Dr. R to say we could wean the steroids a little more (to 0.6). I would love to know what it looked like in the beginning of the week when her lesions did not look so good but it is what it is.
I am a little obsessive about Lil's lesions. I look at them more often than necessary noting size, color, shape, and even feeling. I rub them with lotion and Aquaphor. Sometimes I poke them to see if they hurt. In my defense I have two things to say. One: the plastic surgeon told me to massage them five times a day with Aquaphor, that requires some finesse! And two: I feel like an idiot if I do end up having to visit the ED or the good doc and they ask me questions (they ask specific questions) and I can't answer them! So....today I was investigating and that big pustule popped. I was so shocked, I just stared at it. When I told Mee-maw and my husband, the expression on their faces was enough to wither an spring flower. When I told Dr. R, he very bluntly put me in my place by saying "stop pushing pustules that can get infected." Good point. Looks like David and I are in the same boat.
Or I should say a week out of the woods only to go right back in... Last Thursday (before we left for the ski trip) was the first night LillyAnna did not vomit in months. The next day her eating and drinking picked up dramatically and I was able to go away for a few days without worry. Unfortunately, this Thursday she began her bedtime vomit ritual once again. Not surprisingly, over the last two days her intake has decreased. For example, in the last 12 hours she has only had 6 ounces of milk, two slices of American Cheese and half a strawberry. She has a large pustule in the large lesion that is very sore. I know this becuase when I do Dr. R's finger dance across it, she cries out. A couple other lesions have small papules. This is especially frustrating because last week's blood work looked good. The sed rate was down from 9 to 7 and CRPs stayed below 0.5. Her white blood cell count was up from 9.7 to 11.5 but his marker is generally the least informative for us because (from my crude understanding), your white blood cell count can rise for something as innocuous as fighting off a cold or cutting a tooth. For us, it is also the usually the first marker to rise when there is trouble on the horizon.
In this picture you can see the two very small papules above the big lesion and the large, swollen, red bump on the side closest to the purple pants. She would not sit still for this pic so it is hard to see!
The good news is that she has been VERY pleasant. This is my saving grace. I can deal with some dry diapers, I can give her medicine for the pain, coffee gets me through the days after sleepless nights, and I can even clean up vomit every night without getting too worked up. But when she is miserable, it turns my world upside down. It is always frustrated to deal with a fussy baby no matter how loved but the helplessness and frustration that accompanies a fussy sick baby can put anyone over the edge. You know this if you have ever dealt with a baby that has a cold, the stomach bug or (God forbid) colic. It is torable for the ten to fourteen days of a cold, the few months colic can last will put you on the edge of the cliff but the amount of time we have been dealing with this in conjunction with amount of unknowns involved is getting us closer and closer to going over.
Being close to family and friends is what keeps us on solid ground. Sometimes it is in the seemingly mundane time spent with people that can be most precious. One Sunday we loaded into the family truckster and trekked acoss the bridge to my Aunt Tina's house. The girls spent some time in her bedroom trying on dresses for an upcoming event my aunt is attending talking about whether it is necessary to wear hose for a formal event, if chunky shoes are ok to wear with a strapless dress and a few other topics that are best kept between females. At some point a long-time friend of the family stopped by and joined us. Later, we stood in the kitchen snacking on leftover pizza and sharing ideas and thoughts on my cousin's upcoming wedding and bridal shower. Nothing of note happened or was discussed but I could not help but reflect on the connection women have that is almost tangible. I am sure there are men who could speak to a similar feeling they may get on, say, a golf course or at a sporting event. For me though, there is a kinship between women that ebbs through space and time; the way women can connect with strangers, understand each other's hurts and trimphs without a word. I felt the power of it that day.
Last night we continued our journey of growing through getting to know my adopted husband's birth family. Having a get together at my house was the only way to do it although it caused me no small amount of anxiety. I am pretty comfortable with hostessing at this point in my life but I really wanted this get together to be special. At one point, I took a minute to stop and take in what was happening around me. I looked up and saw small groups of family who had not met until that night sitting together, laughing, playing with the kids and having a genuinely good time.
Lastly, we said good-bye to a great friend of my grandmother's this week. As I have mentioned before, my grandmother and I were not just family, she was also my best friend. Having spent so much time with her when I was a child, her friends became my friends or at least the group of people I spent a lot of time with and thoroughly enjoyed. This could explain my addiction to The Golden Girls (possibly obsession) but I think it also explains my appreciation for people of all ages and backgrounds. Zizi Joanne was one of these people and I loved her to pieces. She was eccentric and fun and brazen. I brought LillyAnna to her funeral and was able to share my beautiful baby with people I have not seen since I was a child myself. They remembered my grandmother as she was to them and it broke my heart in much the same way as when we lost her.
It has been an overwhelming but wonderful couple of weeks. It seems too obvious to say that going through all of this with LillyAnna has opened my eyes and that I have a new appreciation for how to enjoy this life in its awkward stages as well as the beautiful.
When LillyAnna will only eat one slice of American Cheese in a twenty four hour period, I remind myself that she can eat unlike my cousin who up until two months ago only used a feeding tube. 
When I think about the idea that this could have happened to my daughter Antoinette (AKA Cybil, Drama Queen, The Princess and the Pea...), I am thankful for LillyAnna's high tolerance for pain, ridiculously positive attitude and infectious energy. 
LillyAnna helping me clean up her vomit last night.
Or I should say a week out of the woods only to go right back in... Last Thursday (before we left for the ski trip) was the first night LillyAnna did not vomit in months. The next day her eating and drinking picked up dramatically and I was able to go away for a few days without worry. Unfortunately, this Thursday she began her bedtime vomit ritual once again. Not surprisingly, over the last two days her intake has decreased. For example, in the last 12 hours she has only had 6 ounces of milk, two slices of American Cheese and half a strawberry. She has a large pustule in the large lesion that is very sore. I know this becuase when I do Dr. R's finger dance across it, she cries out. A couple other lesions have small papules. This is especially frustrating because last week's blood work looked good. The sed rate was down from 9 to 7 and CRPs stayed below 0.5. Her white blood cell count was up from 9.7 to 11.5 but his marker is generally the least informative for us because (from my crude understanding), your white blood cell count can rise for something as innocuous as fighting off a cold or cutting a tooth. For us, it is also the usually the first marker to rise when there is trouble on the horizon.
