I decided to take a risk during flu season and sign Nika up for swimming lessons so that she could swim during the summer,she will be 4 1/2 after all. It turns out it wasn't so great of a risk to take but it pointed to some clues to figuring her out. The first lesson went tolerably well, although she did spend a little bit of time crying because she was scared. She didn't like the swimming instructor make her float on her back. She spent the next couple of days talking about how she didn't like her swimming lessons but I forged ahead anyway. I convinced her best friend's mother to sign her up as well thinking that she would handle it better. Well I was wrong. Zoe did great - she loved the teacher (who is wonderful, by the way) and the class. Nika cried the entire time again. I watched through the glass wall, trying not to intervene. Finally, after crying the entire time, she started coughing. I zipped out of the lobby and back to the pool where I got her out. I said that that was enough and that we were risking her health at that point. Her teacher, whom I had briefed about Nika's health, completely agreed (like I said, she's great!). If you think that is ridiculous here is the pattern: Nika, aged two, throws a fit because she wants to get out at the grocery store with me. She falls asleep while I am inside and just as I am handing the money over for a week's worth of groceries, Paul sends Elias in to say that Nika is vomiting over and over again and we have to go to the hospital. I take off, leaving the groceries on the belt, and we are in the hospital for the next two days. Several days ago, Nika was angry because I wouldn't allow her to watch another movie. It was late and past her bedtime. She screamed and thrashed around for a long time but then fell asleep. The next morning she woke up vomiting violently. We were yet again in the hospital for two days. So that is the pattern and I recognized the same thing coming on at the swimming lessons. I guess I caught in time enough for us to avoid a hospital stay, although I had to use anti-nausea medications and breathing treatments to avoid it the day after the lessons. But now she has a bad cold - the coughing never stopped and has gotten worse. I'm still not knowledgeable enough in this area to understand why this happened, although I would venture to guess it has to do with swallowing pool water while she was crying. So Nika is back in seclusion, where I likely should have kept her in the first place. One of us will go to church with the older kids and one of us will stay home with her. I'm glad for the experience, however unpleasant it has been. It has shown me that there is a recognizable pattern and that there is a possibility of managing it at home. I have her wonderful T.C. Thompson doctors and residents to thank for that (Dr. Santucci and another one that I can't remember her name) and Dr. Sanderson, her pediatrician, - thank you!

I am going to come out of denial to update the blog. First the good news. Pearl got sick a week before Christmas. This was the full blown stomach bug. We watched her for signs that trouble but she pulled through great. This was a great relief for us. Unfortunately, a couple of days later (on the Wednesday before the Christmas)Nika got the same bug. She spent one night in the pokey and was out and well in time for Christmas. Today Nika got sick again. We think it is just a bug but she is at the pokey again tonight with Jennifer. We have had a long stretch of good health and it is hard to go back to our old stomping grounds.

Christmas Eve

Pearl Ann finally got her Pillow Pet after a long year of waiting.

Life with the kids is just zipping along with hardly any blips. Paul pointed out the other day that the girls' health has been great since we moved to this house. We often wondered if the old house had anything to do with how poorly they were doing. I suppose it is a good possibility but we will never know. I'm just glad we moved.

Pearl Ann at Red Clay today

This was a very interesting tree.  A lizard ran inside it and we were able to see in from both ends.

We have been watchful with Nika for the past few days. She was sleeping in the car yesterday and choked, coughed and gagged like she used to all the time. It scared me. Then while we were having dinner with some friends we were sure she was going to lose her lunch. She didn't and she seems okay but she did fall today in one of her weird "there doesn't seem to be a reason why" falls. Those falls preceded her last hospital stay earlier this month. She is still on antibiotics (ugh) for that one.

Otherwise things are going okay. We started school today, but fun subjects only. There is no reason to be sitting around inside during the hot weather doing nothing and then having school when the weather is nice out. By the way, in my kids' book, "fun" subjects include grammar and history. :)

My car battery is dead right now and we have not fixed it yet because I am walking to work most of the time. That means we only had the van to use when Nika got sick this time. I ended up taking most of the day off on Thursday to go to the pokey in Chattanooga with the family.

On the way in we called Nika's Doctor in Cincinnati to talk about his protocol. We just started seeing him in March so we were not very clear about what he wants done in the ER. We left our number and a message for him to call use back, as one always has to do with doctors. A few minutes later he returned our call, but Jennifer could not answer it because her phone choose that moment to crash.

My first thought was to pull the phone battery out, so I am racing down the interstate trying to do minor surgery on a cell phone. At the same time I was digging my phone out of my pocket. The whole time I was trying to keep an eye on the road because right then I was merging with all the traffic coming up I-75 from Atlanta and going east on I-24. As I am about at the peak of my stress Elias from the back seat asks "Can I pick out the first movie?" He asked a few more times so I politely tell him not to push for an answer. Fortunately he was happy to obey and moved on to his next activity, singing "The Saga Begins" by Weird Al.

I almost told him to be quiet, but that song is kind of calming and I started to feel less stress as soon as he began. We merged safely onto I-24. We called the doctor on the other phone and left him a message. He immediately called us back and got everything worked out. Jennifer was able to get her battery out of her phone, reboot it and get it to work normally again.

This whole time Elias was singing. The rest of the ride in I just listened to him sing "A long, long time ago - In a galaxy far away - Naboo was under an attack..."

Nika woke up lethargic and vomiting on Thursday morning. We have been at the children's hospital here locally ever since. Things are going smoothly and we are looking to be able to leave by this evening, if all continues to go well. This time it is a UTI that landed her here. She is a little slower recovering with this one than in the past but I think she is actually sick and not just randomly vomiting like she normally does. Some of her lab numbers (sodium chloride especially) are staying stubbornly high. We'll see with the next round of labs.

No bad news again, just an update. :) We are continuing to work in the community garden and will be raising basil to take to the church for the Elevation of the Holy Cross on September 14th (also my mother's birthday!). Elias is volunteering an extra day a week on Thursday mornings and will be going to the market in the afternoon with them to help and to sell some water on the side. The person running the garden, Jennifer, has been wonderful about allowing Elias to come and it has given him a sense of purpose that he didn't have before.

Elias has also started his own business. He is taking peoples' garbage cans to the curb the day before trash day and then returning them to the house the next day. He charges .50 a can and has 8 customers so far. Last night was his first time to bring them to the curb but it was pouring rain and storming. Paul and I went with him to make sure he got the right houses. He did a good job. I have to say that I have been quite proud of the responsibility that he has been willing (and eager) to take on lately.

We had tennis camp last week at Lee University. The kids always have a great time and have learned a great deal about tennis over time. I think this was our 5th year.

Otherwise everything is going great! I am thankful that this is so and am grateful for every normal day that we have.

I thought I would update since I haven't in awhile. We have moved to a better location for Paul to get some exercise by walking to work and for all of us to be able to get out and move around more without having to get in the car. We joined a community garden down the road from us and are able to also walk to the library, a few restaurants and anyone downtown events that are going on. We could also walk to a pharmacy or two and Paul's doctor. We like living here!

We had a birthday party last week which was lots of fun. I didn't take pictures like I usually do (I couldn't find my camera and the cell phones were scattered around) but it was one of the best parties we have had so far.

We have been working with Nika since we moved here to get her moving more. She has been playing outside and willing to go on walks. She has even potty trained since we moved! This is almost a miracle considering the fact that moving is a very stressful event for kids. Paul and I figure this is nothing compared to what has happened in the last 3 years (Nika's whole life!). On the health front for her: she is mostly okay but is fighting a cold that seems to be moving down into her chest more. I will be starting breathing treatments today. This is a time where she might start throwing up from the coughing so we have to be careful.

Pearl is doing okay. Still no word about her elevated numbers. I am happy to see her out and moving around on her scooter and bicycle quite a bit.

That's all for now. :)

Still no word about Pearl Ann's elevated numbers. Nika is doing fine as are the other kids. So no much not news, thank goodness!

One of Pearl Ann's tests came back as elevated this week. The normal range is 0-120 and Pearl's is 371, so triple the normal. The test is the most sensitive one available for measuring inflammation in the digestive tract. This obviously isn't good but she isn't showing any abnormal symptoms except for a stomachache here and there. I haven't spoken with her doctor(s) yet so I don't know what the next step will be.

Just a little update to say all is well here. We are still ducking out of social gatherings since I understand the flu is still going around here abouts. It is nice that we have a great big yard for the kids to roam. It keeps the feeling of being cooped up at bay. No more hospital stays or trips to the doctor so far!

We are still trying to find a place to live that will suit our present needs. The house we are planning to move into is taking a very long time to complete - much longer than we were told it would. I am considering taking things out of boxes and putting them back on the shelves! We have decided to look around some more as a result.

That is about it for now. I still don't have our pictures uploaded but will get there eventually.

Stuff has happened in the last week. :) However, we have been busy so we haven't had time to update except for a couple of comments on Facebook. Both girls had clinic appointments in Cincinnati. This was Nika's first visit with a new geneticist since ours left Vanderbilt.

Nika's appointment went mostly well but I was unprepared because I left Nika's medical book at home. I couldn't remember one of Nika's medications because I can never remember that medication for some reason (which is why I carry a book with me!). I think that my brain is full with all the other medication names and amounts that I don't have room for just one more. So anyway, they ended up calling the nurse who gave me a dirty look when I got one of Nika's other medication doses wrong. There were a couple of other little things but it did generally go well. I think we will work well with this new doctor. It helps that he is from Arkansas, right outside of Memphis, so he might as well be from TN. :)

Pearl Ann's ultrasound showed that her liver is close to normal! That is a great big improvement compared to the last one. It looked like the PSC had gone into her common bile duct. Maybe it will again, but it isn't there now!

So we went to Hannibal, MO and visited Mark Twain's home and went to the cave. We were listening to the unabridged book on the way and had just heard the part about Tom and Becky getting lost in the cave when we went in. It was wonderful timing. Eliza was super excited about it. Interestingly, I don't think the guide has ever read the book. She got several things wrong and said that she says what the owners tell her to say. Huh? We didn't badger after we realized that she really didn't know what she was talking about and that she wasn't trying to get us to catch her at it.

We got back to Dave and Betty's the next day and hung out. The next morning Nika woke up vomiting. Ugh. So we got to spend another night at Children's Mercy in Kansas City. It is a wonderful hospital but ... it is a hospital and things almost always go wrong. This time it had to do with Nika's diet. It wasn't that big of a deal but it was stressful for me. The next day was Pearl Ann's 7th birthday. We had to stay in for half the day but left in time to celebrate with her by going to Build-A-Bear. I'll post pictures when I download them. All the kids got a bear (in lieu of a party). We realized Nika didn't have clothes when we got out of the hospital so we had to take her in pajamas and without shoes and rush into a store and buy her some new clothes. She was really happy but we got some looks and comments. Oh well, she looked sharp after we left Children's Place. :)

Then we got to hang out with Paul's brother, Karl, and his family. Connor, our nephew, was old enough for the first time to play with Nika. At first Nika called him "that boy" but soon learned his name and was asking to play with her cousin today.

This experience has confirmed to us that traveling too far from home probably isn't a good idea. Leaving our routine and going to lots of public places seems to get Nika sick and quickly. We nearly had to hospitalize her at Disney last October when we went on Pearl Ann's Make-A-Wish trip. Even Pearl Ann didn't do well on that trip. I guess I am just realizing that we really are that fragile. Freaky momma kind of fragile. Sigh. Anyone who knows me knows I don't like this.

Nika is sick today. She slept a lot today and is running a fever. We were caught a little off guard because we do not have any Gator aid for her at the house. Flat Pepsi (Throw Back) was the only thing we could think of and she LOVED it. She has been walking around with a smile saying "Mommy take care of me." We asked if she liked being sick and she said yes. Then we asked if she likes having IV's in her arm. She does not. But for now it is flat Pepsi, Grape flavored medicine and extra attention from her mom. What's not to like?

Breakfast on a school morning

Pearl Ann and Elias at the space museum in Birmingham

Rock climbing at the space museum in Birmingham

We've had a bit of snow the last couple of days

Nika and Pearl Ann had their visit with the GI last Friday. It generally went well and was uneventful. They are going to try to get the insurance to approve Pearl Ann's Nexxium again since she has been nauseous and having stomach pain. Hopefully that will do the trick.

Pearl Ann has been feeling nauseous again. She keeps going to the bathroom coming out saying she tried to throw up. No one else is sick right now, except with slight colds. She has done this several times over the last few months. I guess I should see it as another bookmark to put in my mind for later.

Baking gingerbread cookies today

Pearl Ann styles herself as the world's largest gingerbread cookie