The Corder Family

2012-01-15T09:13:00.000-05:00

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!

2012-01-04T22:47:00.000-05:00

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

2011-12-24T23:33:00.001-05:00

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

2011-12-13T16:57:00.001-05:00

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

2011-09-10T14:42:00.001-04:00

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

2011-07-11T16:20:00.000-04:00

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. :)

2011-07-03T00:18:00.000-04:00

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..."

2011-07-02T11:51:00.001-04:00

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.

2011-06-16T08:14:00.000-04:00

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.

2011-05-26T08:44:00.000-04:00

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. :)

2011-04-23T14:55:00.001-04:00

2011-04-13T07:40:00.000-04:00

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!

2011-04-08T12:35:00.000-04:00

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.

2011-03-17T22:24:00.000-04:00

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.

2011-03-10T18:39:00.000-05:00

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.

2011-02-16T22:18:00.000-05:00

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

2011-01-22T21:58:00.001-05:00

Pearl Ann and Elias at the space museum in Birmingham

2011-01-22T21:56:00.001-05:00

2011-01-22T21:55:00.001-05:00

Rock climbing at the space museum in Birmingham

2011-01-22T21:54:00.001-05:00

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

2011-01-11T19:26:00.003-05:00

2011-01-10T07:55:00.002-05:00

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.

2011-01-01T12:02:00.002-05:00

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

2010-12-23T23:08:00.001-05:00

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

2010-12-23T23:05:00.001-05:00

Christmas shopping today

2010-12-23T23:02:00.001-05:00

Elias needs his day in the sun, I guess...

2010-12-07T13:16:00.001-05:00

So he sprayed gel in his eye this morning. I think he is okay but we are at the pediatrician just to be sure.

Happy Birthday, Nika!

2010-11-27T08:49:00.002-05:00

Happy Thanksgiving!

2010-11-25T14:39:00.001-05:00

Pearl Ann today out and about. She still feels good but continues to look like she is losing weight.

2010-11-19T22:35:00.001-05:00

Nika this afternoon in our yard

2010-11-17T16:31:00.001-05:00

2010-11-17T07:15:00.002-05:00

Pearl continues to look off to both Paul and myself. We are concerned that it is the change in medication that an insurance company forced on us. We are appealing and are having a second doctor's office working on the problem. I am also going to call our state representative.

2010-11-14T16:48:00.001-05:00

Today in church I was holding my 6 year old angel. Her uncombed head lying on my shoulder. She started to softly sing with the choir this song, the Cherubic Hymn. But it was not quite like that because she was singing in the tongue of angels (or maybe it was greek).

The words of the Cherubic Hymn are as follows:

"We, who mystically represent the Cherubim,
And chant the thrice-holy hymn to the Life-giving Trinity,
Let us set aside the cares of life
That we may receive the King of all,
Who comes invisibly escorted by the Divine Hosts."

2010-11-08T10:15:00.003-05:00

Things are going really well. Really, they are! The kids are doing well in their studies and no one has been in the hospital. Paul has been studying like crazy for his planning certification and I have been cleaning out closets. All nice and normal stuff.

But...Pearl is gray and has dark circles under her eyes. She looks like she is losing weight, too. She feels fine, though. She was just telling me that she put two different kinds of jelly on her waffles and how great it was. These are the parallel worlds we live in.

2010-10-26T16:34:00.003-04:00

I thought Paul posted a longer description of our trip than what I see here! I guess he didn't so I will sum it up now. The fourth day the little girls and I stayed back at the resort because they were both exhausted and didn't seem to be doing well physically. It turned out to be a great day for them. They got to ride the carousel, play at the park and eat ice cream as much as they wanted. Then we just hung out and watched movies. Paul, Elias and Eliza, on the other hand, went to four different parks in one day! Eliza and Elias rode Expedition Everest 8 times. They say they memorized the ride and figured out where the cameras were! They were exhausted when they got home but they had a good time.

The last day we went to Universal and let the kids play in the Curious George area for a long time. We also spent a lot of time in Suess Landing again (I loved that place!). That night was Christmas at the resort so we made it back in time to have pictures with Santa and let the kids go to the party.

We left the next day. It was hard for the kids to come down from the high of getting anything they want but we are finally getting there, two weeks later.

The other reason for my post is that we took Pearl Ann in to the pediatrician yesterday because she is constantly thirsty and water does not help. They said that it is probably the Nexxium she takes (they ruled out diabetes). Someone pointed out that it can do lots of other things as well so I will be mentioning it to the GI doctor next time we see him. It is no fun trying to find new medicines for Pearl - she is tough to figure out.

Nika had a double ear infection and a sinus infection when we got home. She was a mess at Disney so that explains that. She is mostly better now. I am very relieved that she didn't have to be admitted because we found out that the great situation we had figured out for her at the local hospital has now changed. Her doctors are no longer associated with the hospital and are actively encouraging people to not go there. So it would be back to the children's hospital where we would be cared for by residents. This isn't awful, but it is frustrating when you have a kid like Nika that you are trying to get care for. Her own doctors being involved is a much better situation. They hope to become connected with the children's hospital soon. I hope it is before our next admission.

2010-10-13T22:06:00.002-04:00

This is a link to the article about our Make a Wish trip that ran in the Cleveland Daily Banner today.

http://www.clevelandbanner.com/view/full_story/9881777/article-Make-A-Wish-grants-special-trip-to-Disney

Disney Wish Trip Day 3

2010-10-05T23:05:00.002-04:00

We are all back at our villa only now at 11pm. We stayed late at Epcot to watch the fireworks. They were simply amazing and I'm glad we hung around for them.

We started the day looking at Eric the Red and Olaf II in Norway and then happened to run across the breakfast with the princesses. We had been told it is very hard to get into and that the only way was to slide in when there is a cancellation. The girls were kust thrilled and they both got to meet their favorite princesses. Each one spent extra time with them and they were each given
autograph books, compliments of the restaurant.

After that we went to a store and got Nika a Cinderella outfit and Pearl Ann a couple of dolls. I think they are both spoiled rotten now! And if that weren't enough Pearl Ann went and got her hair done and a Sleeping Beauty outfit from the Bippity-Boppity-Boutique. Elias got done up like a knight complete with blue spikes in his hair and an image of Mickey Mouse on the back of his head. He got a sword and a shield to complete the look.

I haven't mentioned Eliza. She doesn't ask for or want much except to ride certain rides. She hasn't gotten to go on some of the rides because of time but Paul is taking her and Elias out tomorrow while the little girls and I hang out here and rest. I think she will have a great time then.

There is much more I could say but I am tired so for tonight I will just say goodnight!

Day 2 of Pearl Ann's Make A Wish Trip

2010-10-04T21:09:00.002-04:00

We spent this morninh meeting Disney characters, swimming and eating ice cream. We went to Universal Studios Adventure Islands this afternoon. We managed to get everyone's one choice in today and even spent a lot of extra time in the Dr. Seuss area. We chased Elias through a shop and ended up going through the exit to a ride. When the workers saw our golden ticket they let us get on right away. We had no idea what we were going in to, but it turned out to be Pearl's favorite ride! It turns out it was an animatronic Cat in the Hat. Pearl liked it so much that she wanted to ride it again right away. The worker cheerfully said that she had no problem with us going again so we got right back on and rode again! When that was over Pearl wanted to go yet again, but Paul and I thought it would be obnoxious so we left. We all loved the Dr. Seuss area. I think it was a clear favorite.

I think I like Universal Studios better than Disney. :-)

Here's just a few really great things about the Give Kids the World resort:
- There is no charge for anything here. All meals, the stocked snacks in the rooms, the ice cream palace and the cookie cart are all available throughout the day. We can also order pizza until 10:30pm.
- There is putt-putt course, an arcade, remote controlled boats, a snoring tree, an outdoor pool with a pirate ship stage and a huge playground. I'm sure I'm missing a lot that I can't remember right now.
- There are over 1500 volunteers here a WEEK.
- The Disney characters come and have professional pictures made with the kids.
- There is a party every night, including Christmas once a week!

Tomorrow's agenda includes Epcot and maybe Magic Kingdom again for a special surprise for Pearl Ann. :)

2010-10-03T20:10:00.002-04:00

I am sitting on the front porch of our villa watching the party going on at the playground in front of our house. Our supper will be delivered to the villa in a few minutes from Katie's Kitchen in a few minutes. It has been tiring but a lot of fun today. We spent the morning at the resort having a naughty breakfast of fruit loops and ice cream and playing putt-putt and riding on the carousel. Then we went to Magic Kingdom. We waited in line at the first character picture opportunity. When the cast members saw this they were nearly upset and told us to always let them know. We did after that and had almost no wait times.

Each kid got to choose one thing that would absolutely get done today. Pearl chose the Monster's Inc. Comedy Show, Nika chose meeting the princesses, Eliza chose Space Mountain and Elias chose Thunder Mountain. We got them all done, too!

The one blip in the day was that when we were called back to see 3 of the princesses Pearl somehow got left behind. I tried not to panic and then when she was found I felt awful. She clearly had been crying. But then the princesses were amazing. It was one of the many times I got a little emotional today.

When we got back to our villa there were surprises on the table. They each got one last night, too. We also get to order pizza as much as we want in the evening and, of course, ice cream is unlimited. They even have non-dairy ice cream, which is great for Elias and Nika.

We rode a train from the airplane to baggage claim last night. When we got in Nika said, "Oh, a car-e-vator! How clever for a 2 year old! The kids LOVED flying and weren't'in the slightest bit annoyed that we didn't get here earlier.

A lot of people have been asking me if I am excited the last few days. I have pondered this question a lot. I have come to the realization that the anticipation I have felt is much like how I feel before a procedure or a planned hospital stay. is how I have felt about coming here. But today a little bit of the cares fell to the aide and I was able to enjoy being with my family and laugh a little, too.

2010-09-28T06:53:00.003-04:00

Here are some photos of the past week as we have counted down to our trip date. I have had projects for the kids to do each day and have allowed them to watch a Disney movie a day. I think it has helped to make the waiting a little more tolerable!

2010-09-24T22:26:00.000-04:00

More Pictures

2010-09-23T09:59:00.003-04:00

Wish Party Pictures

2010-09-23T09:53:00.002-04:00

2010-09-23T00:02:00.002-04:00

We had Pearl's Make A Wish send off party tonight. The volunteers did such a good job of planning and making Pearl feel special. And we had so many people came out we used nearly all the seats reserved. I think we had half the restaurant reserved! Thanks to everyone who made it out. I hope you had a good time!

I can't figure out how to get the pictures up from my phone but I will try to post them tomorrow from my computer.

2010-08-29T20:11:00.002-04:00

I got up early Friday morning so I could cram before the appointment with the hepatologist. Unfortunately Mr. Murphy had imposed his law on the internet so I could not look up the references I needed using the hotel's wifi. Jennifer later demonstrated that the problem was somewhere between the keyboard and the chair because she could get on just fine. I was just left with playing computer games and waiting for the dawn. We arrived at the doctor's office and went through the routine. I had just enough time to connect to the hospital's wifi and get the last minute information I needed. I was ready.

A male nurse checked Pearl's vital signs. We saw him write 116 next to her height. We asked about it and he said it was cm not inches. Earlier in the week Jennifer had a call from someone else in the medical industry and they had asked how tall Pearl was. Jennifer had said 114 in. A few minutes later the lady called back and asked if Pearl had a growth disorder. Jennifer said "No, why?" The person on the line said that 114 in. was over 9 ft tall. It all makes sense now!

We got into the examining room and as Pearl watched a movie we talked to the doctor. We reported that everything was going well. She was not itching at all...no sign of Crohns...no fevers...no dehydration...she learned how to swim. Dr. Campbell showed us Pearl's growth chart - she has gone from almost falling off the height and weight standards to being exactly at the 50th percentile. She is developing normally. Then Dr. Campbell asked if we had any other concerns. Jennifer and I looked at each other and we both thought "the only concern we have is that the next question will have something to do with changing or adding a medicine." We have read enough of Proverbs to know that there are times in this world when the best thing to do is shut your mouth, hold your breath and let the river take you where it will. The doctor never brought up the options we were worried about and neither did we.

We have crossed some raging rapids and the currents are tricky but for now the Archangel Micheal has rowed the boat ashore and now Pearl sits on an island of calm. And this island just happens to have a Disney World on it. We wanted Pearl to take her Make a Wish trip when she was well enough to enjoy it. Barring an unforeseen downturn in her health, her trip is coming at a good time.

2010-08-24T19:56:00.003-04:00

We leave for Cincinnati on Thursday. I have been anticipating this appointment with Pearl Ann's hepatologist for awhile. I can't say I have either looked forward to it or dreaded it, just that I have seen it looming ahead of me since our last appointment. It is a big one. We have to make the decision as to whether we will allow Pearl to take a certain drug on a maintenance dose or not. She has a poor history with side effects and drugs, especially this kind, so the answer should be no, but then we worry about not taking this drug or one like it as well. If what the hepatologist says is true, then she could become very sick with infections if she doesn't take it.

I have done my research - I read a chemistry book and understand a little bit about the drug itself (I think). Well, I know enough to know that what I was worried about originally probably isn't an issue because of the chemical structure. But then there is anecdotal evidence about this drug - there are a lot of people out there who have had terrible side effects. It is a tough call to make. I still have a couple of days to think about it and form questions to put to the doctor. I need to start putting these thoughts down on paper...

2010-08-20T15:12:00.002-04:00

Life has really been serene for us this summer. We did have the major bump last week but I think we are finally over it. Well, we were. I went to pick up our medication from the pharmacy yesterday and saw that Pearl got a medication that hasn't been prescribed to her. This is her reflux medication, which she is really sensitive to. I called the pharmacist this morning to find out what happened. I still don't know exactly who ordered the wrong one, but it turns out that TennCare denied Pearl's full dose for the right one. Why? Well, because it is August, of course. We go through this every year. TennCare has to approve the more expensive medications every year and they require Pearl to take a half dose (one instead of two) to prove that she needs the two. What business it is of the insurance to adjust her medication? Isn't that her doctor's job? And, by the way, no one changes her medication without consulting me first. Even her doctors. Period. So my serenity has been interrupted, be it ever so small a problem. It means that life isn't normal and that I have to engage the medical system all the time, whether I want to or not.

2010-08-18T09:42:00.002-04:00

As most of you have guessed by now, we are out of the hospital. Nika improved on Sunday enough that we were comfortable bringing her home. We have spent the last few days in our usual transition back to home, but I think we are about there now. So the task ahead of us is to get caught back up with school and to continue to live our lives normally until the next episode. Thanks for all your messages, emails and visits!

2010-08-15T08:53:00.000-04:00

2010-08-14T23:01:00.000-04:00

2010-08-14T22:59:00.002-04:00

Nika still isn't able to stand, although she can sit up now. Whenever we try to stand her up she is very wobbly and falls. So we are here another night. I am quite hopeful that she will be strong enough tomorrow that we will be able to get out in time for Eliza's birthday dinner.

2010-08-14T07:47:00.002-04:00

Nika was up until 4:30 am this morning. I am beat! Fortunately, Jennifer's mom and dad have taken Elias and Pearl Ann this weekend. That should make things much calmer and easier to handle. I think they will get to have a good time and we will be able to handle this hospital stay more smoothly and possibly plan for Eliza's birthday, which is on Monday.

We think Nika is improving but it is kind of hard to tell because she is on a constant dose of zofran. She still seems to be in a lot of pain but no fevers have shown up in the last 24 hours. Her appetite is also up. I am hopeful that we can be out of here by tomorrow morning.

2010-08-13T09:50:00.002-04:00

We are still here. Nika's temp continues to go up and down and her appetite isn't normal, although she is actually eating now (because she is on a continuous dose of zofran). It is just a matter of waiting out the virus before we get to go home.

2010-08-12T07:43:00.001-04:00

Nika's fever went back up during the night but was easily dealt with with a dose of Tylenol (and she didn't spit it out like that last one). Today we wait and see and try to have our first day of "hospital school" for the year. I hope they have a space here for the kids to work. What luxury that would be!

2010-08-11T14:05:00.003-04:00

Nika went downhill pretty quickly this morning. We went straight from the pediatrician's office to the hospital. We are going to try using the local hospital this time instead of travelling to Chattanooga. If we stay here then Nika's pediatrician will be the one taking care of her. And since we know her general pattern of illness now we don't need specialized pediatric care in most cases.

The staff has been wonderful here so far. When we got here we were supposed to have a direct admission but the office had just called when we walked in the door of the hospital. I took one look at the line and decided to take my chances with the ER. We found our way there only to find it crowded as well. I did my best to communicate to the ER front desk person that Nika needed to be seen right away (she had thrown up on the way to the hospital) and that she needed glucose. I think the guy got it. He said he put us in front of everyone else. Right after he told me that a nurse came into the ER and said she was taking us to a room! We ended up by-passing the ER and the slow admission process! So we came straight up and she is on the glucose now. She is still feeling poorly - it is just a matter of waiting for her to feel better now.

I guess our 3 month summer break from the hospital is over now. I brought school books with us, as we have started back in that as well, but I don't have the heart to make the kids do school today. We'll make it up tomorrow and Friday.

2010-08-11T08:05:00.003-04:00

As we have posted, Nika has been struggling for over a week now. Last night it got a little worse with the addition of a fever and, I am almost certain, some sort of pain. I gave her Tylenol which took the fever down to about 99 deg. F. She talked in her sleep all night and tossed and turned. Her blood sugar was normal but she won't eat and will only drink Gatorade.

I must have gotten about 3-4 hours of sleep and that is being generous. So we are breaking our winning streak and heading to the pediatrician. Boo! Boo! Hopefully it is treatable at home. This last stretch has been the longest we have ever had without a hospital stay for the girls - over 3 months!

2010-08-04T21:29:00.002-04:00

We are doing really well right now. It has been almost 3 months since anyone his been to the pokey, and that was for Jennifer's gallbladder. Nika gave us a scare yesterday but Jennifer got her to eat some sugar right before they got to the ER.

Last week Pearl got a yellow band at the Y pool for swimming all the way across. Now she can go on the slide in the deep end. This is a big deal to all the kids. They officially move into the big kids club when they get the coveted yellow band. :)

The kids started school on Monday. We aren't going to be in any sports, except for maybe baseball in the Spring. We are going to take a year off just to concentrate on getting ourselves pulled back together. Hopefully we won't meet our deductible this year and we'll actually have some long periods at home to study. A lot of studying took place in hospital rooms last year. I planned for it this year in the way I have everything organized, but I really hope we don't have to use it this year.

It looks like Pearl is getting her Make-A-Wish trip to Disney in early October.

Nothing but good news to share. I could get used to this.

2010-07-20T22:42:00.002-04:00

When Pearl got sick I was thankful that she did not understand everything that was going on. I worried about what we should say when she asked questions.

Pearl has been scared about the headless horseman lately so when she told us at the kitchen table she was scared I didn't think much about it. It was 10:00 PM, (Bill Cosby says 10:00 is when the monsters come out) she needed to be in bed soon anyway. Jennifer asked her why she was scared. Pearl said because she didn't know if she was going to be an adult. Okay, this could still just be generic kid fears. After all I never believed my parents were ever kids. Jennifer said "Oh, why?" Pearl said she was scared she would die before she grew up. Refraining from pulling my hair out, I asked her why she thought that, being sure not to let on my inner thoughts. She said a lot of kids that are sick don't grow up to be adults. One of us told her she was more likely to be hit by a car than to die from what she has. I had to walk away. I so much do not want her to worry about being sick. I can handle fears of the headless horseman because he does not live here. I cannot say that about PSC.

Even though everything has been quiet on the medical front with her, she is starting to understand. She is starting to carry some of this cross for herself.

2010-07-19T22:33:00.003-04:00

We had a close call last night. Nika has seemed off for several days but we have managed it okay. Yesterday she threw a fit like she hasn't thrown since the times when she would throw the fit, throw up, fall asleep and then wake up very sick. This time she fell asleep with no throwing up and woke up without throwing up but her eyes had the puffy sick look to them and she definitely needed some energy. Gatorade was her best friend yesterday and today. She carries it around like a doll. Last night her temperature reached 101.5, the official mark of a fever. She responded well to Tylenol, though, and was mostly okay today but was still a little clingy. The above are some pictures from this morning when I took her temperature and she was still getting her energy up. Pearl Ann joined in the fun.

And, in case you are wondering, I do have very nice clothes for her - she just strips them all off the moment we walk in the house. :)

2010-07-05T13:44:00.002-04:00

Things continue to be quiet around here. Nika's cold finally went away and she has been doing great ever since. Her speech has taken off and she looks more and more grown up everyday. We are enjoying the summer by going to the pool, seeing friends and family and having campfires in the backyard here and there. In a word, things are normal! :)

2010-06-25T16:11:00.002-04:00

Pearl Ann had a fever when she got home yesterday afternoon. Her temperature was still over 100 last time I checked it today. I gave her Tylenol last night but wanted to see if she can burn it off today. If she doesn't get any better I'll take her to the pediatrician on Monday.

2010-06-24T10:58:00.002-04:00

Everything has been very quiet lately. Nika has had a cold that we have been watching. It got pretty bad for a few days so we tried breathing treatments to see if she could pull through it without antibiotics. No such luck. She just finished her 10 days yesterday but she still has a cough. I am hoping that it goes away on its own now. Besides all of that we have been taking it easy and just going to the pool. It is so hot already!

2010-06-11T12:12:00.002-04:00

There are lots of little things to report but nothing catastrophic. Nika has had a cold for over a week now, not really news for most kids, I know. But I had the same cold and am almost over it. Hers is getting worse. I gave her some breathing treatments last week but they had little effect. I spoke with the pediatrician today who prescribed an antibiotic. She lost it with the last yucky diaper so I checked her blood sugar. She stays above the 100 mark if she is doing well. It was 91 - so not horrible but a sign that we need to be on guard. I got the Gatorade man (Elias) to make her some and fed her some cheese. She seems to be doing better. She has eaten all morning so that reinforces the concern for the blood sugar on the low side. That shouldn't be happening if she is okay. I will try some more breathing treatments over the weekend if, that is, we can manage to stay out of the ER. Speaking of the ER...

Pearl Ann woke up on Wednesday morning throwing up bile. She has been complaining of stomach aches for a couple of weeks now so I was worried when she started this. I took her temperature and it was 94.5! We decided we needed to have her seen - preferably at the ER. In the end that is what we chose and I'm glad we did. We got all the tests done at once and got most of them back. She also got a bag of fluids which seemed to help her feel much better. She is okay now.

This week was tennis camp week for us. It is always nice to have a week of just going and sitting under the trees with my friends while the kids learn about tennis. All the kids except Nika can play now. Pearl Ann seemed to like it a lot and Eliza said this was the best year so far. We also went to the pool afterward on Monday and Tuesday. I'm afraid that proved to be too much for Elias. He had a bit of a breakdown yesterday and we ended up turning around and coming home today. We only missed an awards ceremony and our friends signed us up for next year. After a little bit of crying everyone accepted it, especially when they found out we will still swim tonight if the weather holds out.

The other big news of the week is that Pearl Ann learned to swim! No one helped her, she just worked on it over the last several days. Now she is trying to get the yellow arm band, which would allow her to swim on the deeper side without me.

2010-05-28T08:13:00.003-04:00

No news, really. We are just taking it easy this week and hanging out with each other. I have let the kids watch several movies on off days and they bought themselves a kiddie pool (they were shocked it was so small, because the picture looked so big!) that they splashed around in for awhile. Hopefully I'll be back up on my feet in the next week and we'll finish that school year that got cut short. ;)

2010-05-23T09:51:00.003-04:00

We are all home after a strange week. I, Jennifer, ended up having my gall bladder removed and apparently am very lucky that it wasn't far worse than what it was. It turns out I have been walking around with a dead gall bladder than had turned gangrenous and infected. The recovery room was rough - I couldn't keep breathing without the nurse shouting at me across the room to wake me up every time the alarm went off. I wasn't sure why she was doing that for the first couple of hours. I was in recovery for 5 hours before I woke up enough to satisfy her. I ended up staying longer than usual after the surgery so I got a lot of rest and sleep. I probably slept more than 16 hours a day most days.

Thanks to Betty and my Mom and Dad for coming and helping to take care of me during all this! Hopefully things will be moving towards normal again...whatever that is. :)

2010-05-19T07:33:00.003-04:00

This is a quick update on our trip. Pearl does not have Arthritis. Nika will likely get a g-tube (a tube right in her belly for food). Jennifer has what we think is gall stones and is still in Nashville with my mother.My Mom is awesome :). They will do a scope to see if Jennifer needs her gallbladder removed. Me (Paul) and the 4 kids are home in Cleveland despite the the sinkhole in I-24 east bound yesterday. Today is Elias' birthday he is 9.

2010-05-07T16:05:00.002-04:00

Pearl Ann and Nika went to see the local GI doctor yesterday. Things were very straightforward for Pearl (just a new treatment for stomach pain). However, we had a lot to talk about for Nika. He informed us that there is a possibility that Nika could be getting brain damage from the crises that she's been having. The fact that she has been having them a lot and that they are getting worse puts her in even more danger. He would like to do a couple of things to help her: tube feedings at night with a cornstarch slurry (especially since she won't take cornstarch by mouth) and a central line so that the ER can get access to her veins more quickly. Neither of these are very exciting prospects but we see the necessity of them and are willing to go along with the plan. He is going to consult with Nika's geneticist and then we will go from there.

The good news is that we are a step closer to making Pearl Ann's wish a reality. She would like to have something like this. I'm not sure if it is possible or not but we aren't going to discourage her at this point. One of the rules is to not have new construction. I don't know if a playhouse counts as construction or not.

Eliza's new guinea pig, Ella

2010-05-03T13:04:00.001-04:00

2010-04-30T18:57:00.002-04:00

We have had a mostly quiet couple of days. We are still on edge about Nika, though. She threw a fit this afternoon which sent her into coughing and gagging fits. I was beginning to wonder if we would be hitting the ER doors again but Eliza calmed her down. She stuck close to me all day and wouldn't play. I got the lab results from Wednesday and it showed that she still wasn't completely better so maybe this is just part of pulling out of whatever it was that was going on.

Eliza got a guinea pig today. She finished her math book in 4 days (32 pages in one day!) so she got her guinea pig as promised! I must say though, either the animal or the wood shavings kind of stink. Ugh.

Pearl Ann had a rough night and morning. She seems to be refluxing bile again and was nauseous just from drinking her formula. She also tossed and turned all night. I took her to the pediatrician but she felt okay by then. They did liver labs today just to be sure all was well. We haven't heard anything so I am assuming they were normal.

That's all my news for now. Hopefully we can have a quiet weekend at home doing normal people things. :)

2010-04-27T21:14:00.003-04:00

Nika went into the pokey yesterday. She woke up lethargic and threw up on Jennifer. It seamed like a typical trip to the ER but when she got there they had trouble getting an IV in and her blood sugar was down at 35 (saying that is low would be an understatement). From our lay perspective the labs look like her lungs and kidneys numbers were low but I do not think it was bad enough for the doctors to be very worried. For some reason that does not stop us from being worried.

Today Nika rebounded well and was in the playroom with a 10 year old who was deciding whether to say goodbye to his 7 year old brother who had been fatally injured in a car crash. He decided to go in before they pulled the plug. The playroom there is rarely all fun and games.

When Jennifer got home she got a call from Pearl and Elias' ballet director. She said Pearl and Elias would not be in the recital because they missed Monday's lesson. She said it is a shame because Elias is really good at it. Jennifer and I were not suprised. We never made it onto their email list so we have been out of the loop with them anyway but it is just one more thing we have let slip.

I was told once that most people just want you to be dependable. We have a long way to go on that front. I even had to bale out on the planning commission meeting tonight.

We came as close as we ever have to losing Nika yesterday (the doctors were not too worried so we must not have been that close) so given the choice I would choose the ER over ballet anytime but that does not change our social reality.

2010-04-22T16:07:00.001-04:00

Good news! The biopsies from Nika's scopes all came back negative. So we are probably just dealing with reflux, maybe asthma and have (hopefullY) just gotten rid of c diff. Maybe we actually have a chance of staying out of the hospital for a good while. :)

2010-04-15T22:12:00.003-04:00

I got to Elias' baseball game a little late tonight and noticed that he had one Nike cleat and one Addis cleat and no socks. His hat and glove were in the van with Jennifer and Nika at the pokey. Eliza and Pearl fell asleep so I left them in the car while Elias changed cloths in the bathroom. Fortunately his team was batting first so he had a little time before it was his turn. He ended up getting tagged out at home (but he slide well) and striking out. No one on his team hit well. It was like the lights never came on for them.

When I got the girls out of the car I noticed Pearl walking slowly on the gravel so I looked and she didn't have any shoes. She said she left them at the sitters house (She had a game tonight but we missed it).

If you see some poor kid without a hat or a little girl at the park with no shoes and no mother in sight just know that as bad of a day as the Dad was having it did not even compare to the day the mother was having at the hospital. I will just say that they did not know Nika was coming yesterday and it did not get much better from there. Usually everyone has it together at the hospital but this time the lights never really came on. It was a rough stay.

So far nothing is showing up on the tests but we have to wait for some of them. Nika is still in the pokey as of this post (around 10:30 pm) but she may still get out before midnight.

2010-04-14T22:53:00.002-04:00

This photo was taken right after Eliza and Elias had their first roller coaster ride. Their Uncle Jeremy rode with them. Elias was scared but Eliza loved it. I rode it with all of them the next time. It had 3 spirals! What a way to be introduced to roller coasters! Pearl Ann rode the Blazing Fury (I rode it when I was a kid, too!) and she loved it! She ended up riding it 3 times. She would have ridden the other one but she was too small.

Nika had a rough afternoon in the hospital. She threw up the Golytely (the clean out solution) so we had to back off on it and raise her glucose, which was already at 187. I hope the scopes can still be done tomorrow.

2010-04-12T19:47:00.002-04:00

We have been very, very busy lately. It has been a good busy, though. My sister and her family have been here from overseas and of course there was Holy Week and Pascha. So I thought the blog deserved an updated, especially with some medicals events coming up.

First off, we have lost Nika's geneticist to another hospital. I don't know where he has gone. If I did we might follow him. This is a big disappointment and we are not sure of what steps to take next. We are pretty sure we won't move her care to Chattanooga. UT genetics, both in Knoxville and Chattanooga, just doesn't seem to suit us as a family. We will likely meet the new doctor that has been assigned to Nika for her next appointment and make a decision then.

Nika has a colonoscopy coming up on Thursday. She will be admitted Wednesday morning for a clean out since it would be dangerous for us to attempt it at home. I bought some natural "legal" clean out foods today from the health food store. The prospect of a kid already on glucose taking in high fructose corn syrup on top of it is daunting. Maybe the natural sugar will combat it a little bit.

She has had an elevated temperature the last couple of days and has had a hard time maintaining her energy levels. The temperature is rising tonight. She doesn't have any other symptoms of illness so I don't know what is going on. I'm not sure which way to proceed since she will be admitted in less than 48 hours anyway. A pediatrician's office visit would be somewhat fruitless at this point. We usually go there in order to try to avoid a hospital stay.

What bothers me about the elevated temperature (it's not a fever, by the way - 99.7 right now) is that she seems to get these in between rounds of antibiotics. If this turns out to be another ear infection I am going to try to get through it without antibiotics, even if it means a longer hospital stay. I think, unless there is a more serious underlying problem (such as an immune deficiency), that her body would be better off learning to fight the infections off itself, just like with any other kid.

One thing I do know is that the reflux medications seem to have helped tremendously with her vomiting. We haven't had one vomiting episode since she started on it. She also coughs far, far less and, strangely, her balance in general is much improved.

I don't know what the GI will find on the scopes on Wednesday, but I hope that we can look back on it and say that even though nothing was found, we are glad we had a look. :)

Pearl seems to be doing great on the drug the doctor in Cincinnati put her on. I think it is improving her day-to-day life. She only complains of stomach pain occasionally and seems to have mostly normal energy levels.

The other two kids are doing great!

2010-04-02T06:51:00.002-04:00

I think we are going for a record! It has been at least a month since we have had a hospital stay. I think it could be one of the medications that Nika is on. She does have a bad cold that could have ended up with vomiting but nothing came of it. If it was reflux that she had then it would make sense that she would vomit whenever she coughed.

Our Holy Week is the same as the west's this year. Elias went to the 12 gospels service last night, which is 3 or more hours long, and stood for the entire thing! He has also read 2 epistles this week. I am quite proud of how much he seems to be maturing.

2010-03-25T13:56:00.002-04:00

I have a bit of medical news to share. Nika is having a colonoscopy and endoscopy on Thursday, April 15th. She is going into the hospital on Wednesday to have a clean out and will be hooked up to glucose. She is doing very well, though, and I don't expect them to find much of anything. Her allergist/immunologist also ordered some immunology tests to see if she has immune problems. I really think that her problem was reflux and that it somehow affected her muscles as well. She doesn't seem to have any problems at all now.

I also just got a call from Pearl Ann's pediatrician about setting up the rheumatology appointment at Vanderbilt. Hopefully that can be coordinated with Nika's genetics appointment.

We are still on a bit of a hospital vacation. I hope it lasts through my out-of-the-country-family's visit here in the next couple of weeks.

Baseball season is here!

2010-03-22T19:41:00.001-04:00

2010-03-22T19:40:00.001-04:00

2010-03-22T19:38:00.001-04:00

2010-03-22T19:37:00.001-04:00

2010-03-22T19:36:00.001-04:00

2010-03-22T19:28:00.002-04:00

Still no hospital stays!

The kids are in a play with the Missoula Children's Theater this week. The play this year is "King Arthur". Pearl Ann is a mini knight, Eliza is a damsel in distress and Elias is camelotian (part of the angry mob). They had such a great time last year and this year's play is supposed to be even more fun. Let's hope so! They've been driving me crazy with their excitement, lol. :)

2010-03-20T17:07:00.000-04:00

Nika's appetite is down today. Let's just hope it is her being a 2 year old.

2010-03-18T21:52:00.002-04:00

I took Pearl to swimming lessons today. At one point they went all the way down to the deep end and had them jump off of the starting blocks used at swim meets. Most of the kids were afraid to jump without holding an instructor's hand. Pearl and one boy didn't want any help. They jumped right in and had a great time. After the lesson I took her to the playground were she played hard. I saw her hanging on the monkey bars. I was curious if she could support her weight while hanging from just one arm. She did great but at one point she started to fall and she grabbed a bar with one arm. She got control of herself enough to grab on with the other hand and then let herself drop safely to ground. Then she skipped off like a little sprite. Even with all she struggles with she is still a good athlete with great strength. She is really starting to learn body control and imitate her older brother. On the way to the car she ran ahead. When I finally caught up to her she was up in a tree. Tomorrow she starts baseball practice. She is really turning into a little girl now.

2010-03-18T10:31:00.002-04:00

Thanks for your posts of support! We appreciate comments - it helps to know people are reading and what they are thinking.

Good news! I was telling some people at church last night about the syringes. A friend of ours who is a surgeon told us to call today with the product number and he would order it through his office! So we have syringes for now. I am still going to try to work it out with the insurance but his graciousness gives us breathing room to find the source we need for them.

Nika is falling again and Pearl is having joint and tummy pain. Blah...

2010-03-17T15:26:00.002-04:00

I had the frustrating experience of being told yesterday that Pearl couldn't get the syringes she needs for her medication because she has insurance. What??? Because she has medicaid as a supplemental insurance and our private insurance has a copay, and because the health care company does not have a contract with medicaid in our state, it is illegal for the health care company to charge us the copay. So they are "choosing" not to provide the syringes for us. Never mind that I was holding a credit card in my hand to pay them. Since when was it illegal to pay for services that you need?

2010-03-15T20:16:00.002-04:00

Nika had a test last week involving X-rays and a contrast. They were looking for refluxing back into her stomach which would in turn cause the vomiting. I doubt they found anything. We didn't hear back Friday or today. She hasn't had any problems and, once again, that is combined with the fact that she is on antibiotics. We'll see if she stays healthy after they end. Her last dose is on Wednesday night.

Pearl is doing relatively well. She has had some pain but has coped okay with it. I am still looking into Cipro and have been frustrated with the lack of knowledge that people who should know more about don't and look at me strangely when I mention ingredients in it and reactions people have to it (which happened today). This information is available so why don't they know? Maybe they have so many drugs to keep up with they can't look into them all. But if it isn't a medical professional's job to know these things, whose job is it? The pharmaceutical company? Mine??? If I can't obtain information from the professionals, where am I to turn? Exactly where they don't want me to go - the internet. And maybe my kids' science books, lol.

2010-03-08T07:54:00.002-05:00

We're out! Nika went home on antibiotics Saturday night. She had been so weak she couldn't even hold herself up while propped up on pillows - she would fall to one side. And then within 3 hours after that she was up out of bed!

Happy Birthday to Pearl Ann! She is 6 years old. She has already told us she doesn't want any singing because it embarrasses her, lol. We are only allowed to say "Happy Birthday" and I think she's only letting us do that because it makes us feel better. :) I am taking her to the YMCA to swim today and to play on a big indoor playground.

Have a great week all! I'll post again if anything interesting happens!

2010-03-05T21:23:00.002-05:00

So the antibiotics ended yesterday morning(for the c. diff infection) and we are back in the big house tonight. This time it is fever, a double ear infection and a UTI. All her numbers look good but, for whatever reason, she doesn't. We were actually directly admitted per the orders of Nika's pediatrician. We got up here in record time. I think it took a total of 15 minutes from when we walked in the door to when we got to our room. Unbelievable. And we got a new room - a big one at that. And of course our nurses are fantastic as usual. I love the nurses here at our hospital.

So now we just wait for Nika to perk up. That usually takes about a day. What stinks is that we were supposed to all celebrate Pearl Ann's birthday tomorrow after the kids' last basketball games. We were going to go to have pizza and I was going to make her a mermaid cake and open gifts. Grandma and Pop-pop are still coming as we planned and they'll get to go have pizza and play basketball, but Nika and I won't be with them.

2010-02-24T20:43:00.000-05:00

2010-02-24T15:14:00.002-05:00

Nika is out of the hospital and is on Flagyl for a c. diff infection. We were sure she didn't have it when she was tested for it at the hospital. Maybe that is the cause for the diarrhea, or at least part of it. Her appointment with the GI is on Friday. Pearl will be going to see him as well because of stomach pain.

2010-02-22T13:08:00.002-05:00

Nika started throwing up at church yesterday. We had barely got home from Cincinnati (the night before) and then this happened. I thought something might be off on Friday afternoon and my hunch was right. The doctors here are getting to the point where they are more willing to look at other problems besides just MCAD. So maybe we can get her straightened out and not have to land here so much. :) We should be able to leave this afternoon.

2010-02-19T13:44:00.002-05:00

We had the appointment with Pearl's hepatologist in Cincinnati today. She told us again that they have no idea how quickly this disease is going to progress but that it will likely get worse and that we need to be giving her a maintenance dose of an antibiotic called Cipro. There is no love for Cipro in our household. As a matter of fact I tell doctors to list it as an antibiotic because I am so opposed to it. The problem is that it is the only targeted antibiotic that doesn't have known rough side effects. Dr. C doesn't believe that the other drug used commonly (Bactrum) would be a good choice for her because she does seem to get the stranger and rarer side effects with drugs, especially antibiotics. The reason why we are even considering it as an option is that giving her the Cipro would likely keep Pearl from getting cholangitis. Cholangitis could (and likely would) cause scarring and narrowing of the bile ducts. This is not only generally bad for her well being but we think it could also keep her from getting the brushings in the bile ducts that she would need when the risk of bile duct cancer becomes greater. It's kind of like trying to keep your pipes cleaned out so you don't cause damage in the long run.

So our homework is to figure out whether we are going to allow this antibiotic to be used for Pearl or not. We are concerned about her general well being as well as her liver. And although we know they are intimately connected we have to look at the big picture of Pearl's whole life. Is it better to keep Pearl off of the antibiotic and wait until the first attack (but would likely cause damagwe and a lot of pain) or would it be better to go ahead and allow the Cipro now and invite the problems that come along with using antibiotics long term?

The other issue brought up was how Pearl is feeling day to day. Dr. C thinks that since Pearl has struggles day to day that a medicine that originally came from bears (bear bile) but that is now made synthetically might help her. It is called Actigall. It is safe at low doses and we have already read much of the literature about it so we are going to give it a try.

We also had her tested for a UTI because she's been having tummy pain. We won't know anything qbout it till the cultures come back on Monday. The other tests she had were the standard bloodtests she always gets with one additional one to see if her itching is related to her liver and an Xray to see if she still has pneumonia or not.

Paul's mom and dad were here with us and kept the other 3 at the hotel while we went to the hospital. Thanks Dave and Betty!

We are on our way home now and should be back by tonight.

2010-02-15T11:24:00.002-05:00

I got a scheduling phone call from the allergist's office a few minutes ago. I am still mystified as to why the pediatrician wants us to go to them but I will roll with it and see what happens.

One interesting development that I am not sure is good in the long run is that the antibiotic that Nika is on for pneumonia seems to be taking her diarrhea away and making her stools normal. This is EXACTLY what happened to Pearl Ann when her Crohn's Disease was out of control. That's one to tuck into the back pocket. :(

Pearl finished her antibiotics but still has a heavy cough. If it doesn't clear in the next day I will be taking her back to the pediatrician. I don't want another long hospital stay in Cincinnati because of pneumonia.

2010-02-13T08:36:00.002-05:00

I guess it is my turn to be sick. I lost my voice all week and then had (and still have) a sinus infection yesterday. I am feeling a lot better, thanks to my home remedies and a great husband, but I am still not tip top. Hopefully another day or two of rest will get me there.

I got the call back from the pediatrician yesterday. They want Nika to go see an allergist. This was a bit of a surprise considering the discussion at the doctor's office centered around her coughing and vomiting being reflux. Oh, well, we'll just go with it and see what happens. I know she is probably intolerant to dairy products, but I can't think of a thing she may be allergic to.

Pearl Ann had a rough day yesterday. I decided that if she was any worse this morning then we would take her to the ER to get labs drawn and make sure she is still is a safe place. She is happily reading Berenstein Bears books on the couch right now so hopefully no ER visits today!

2010-02-10T22:07:00.002-05:00

I took both Nika and Pearl to the pediatrician today. Pearl's cough had not only not improved on its own, it sounded worse and she seemed to feel poorly. I wanted to talk to the pediatrician about why Nika cough, chokes, throws up, loses her balance and has weak muscles. I have been thinking that maybe this isn't related to the MCAD at all and that maybe she has something simple that can be fixed. I had no idea where I was going with my thoughts, but I wanted to spell them out to the doctor and see if she had any insight. What ended up happening was that the doctor found pneumonia in both girls. So Nika got a breathing treatment and they both got put on antibiotics again to treat it. Ugh. I will never like that stuff. Does anyone know of a natural treatment for pneumonia? If you do, send me an email!

The doctor had some insight into why Nika has the choking and vomiting. She thinks it may be reflux. Then she asked me what the chances are of the rest of us having Crohn's Disease. That is a question I do not want to hear by a medical professional examining Nika! She also asked if Nika chokes and gags after eats. I honestly didn't know the answer to that. I know when she does for sure (when she is very, very angry) but I have never noticed a pattern otherwise. She said she would talk to the other doctor about it tomorrow and give me a call. We left at that point and went out to the van. Nika had had a lollipop during the breathing treatment. This was about 20 minutes later and sure enough she choked and gagged! It is seemingly more and more likely that we are dealing with reflux, the "simple fix" I was looking for.

Elias made supper tonight. He said it was an invention and he called it "hispanola". It was frozen blueberries (still cold), bacon and crushed hard sourdough pretzels. It was so terrible I couldn't control my laughter. I laughed so hard my stomach hurt!

The downside tonight is that Pearl is literally positively green and yellow. No yellow in the eyes, though. It's a good thing the trip to Cincinnati is coming up!

2010-02-05T08:02:00.003-05:00

Things are rather calm right now. Pearl's cold seems to be getting worse and her chest hurts from it but I can't really do anything until there is a change in her symptoms. Nika is fine right now, so we'll hope things just keep going in the right direction and that Pearl gets better on her own.

We removed Eliza from band yesterday. I write this here because it relates medically to our lives. She really likes band and wants to continue on the trumpet, but she fell hopelessly behind when she would miss because of hospital stays and out of town doctor's visits. It was unfair to ask her to continue to go and be embarressed constantly because her skill levels were so far behind everyone elses'. I am going to insruct her in basic trumpet and then we'll try again in the Fall.

Eliza and Elias joined a chess club at the YMCA last night. I think they really liked it - they were both excited to come home and play before bed. One of the reasons I like it is that there are lots of adults in it with them. I remmeber when I took a sign language class when I was around their ages. I was the only child in the class and it was a good experience for me.

Catching Up

2010-02-03T09:51:00.003-05:00

The days got away from me so I have not been able to keep up with the posts here. Sorry about that.

Nika got out on Friday right when a snow storm was hitting. The roads were very slick but I had to get to the pharmacy in order to get some medication for her because she had pneumonia setting into her lungs. I didn't want to be stuck in a snowstorm with a fragile kid whose lungs could get worse quickly. So it took us 4 hours to go from the hospital, to the pharmacy and then home. I was scared the whole way that we would slide off the road and there were a couple of times I nearly slid into other cars. I lived in southeast PA for awhile so I know how to drive in snow, but the road conditions, for once, were truly dangerous here in TN. We made it home okay and Nika was alright over the weekend.

Moving on to Pearl. She has had a heavy cough now for several days. She doesn't seem to be clearing it very well but I decided to watch it and see if she could get through it herself. It seems we won't be having any such luck. It is getting worse today and she is beginning to get quite nauseous. Her temperature is also a little high for her. So we are going to the pediatrician today to see what should/can be done. Hopefully it is an easy fix (nebulizer) and we can go home.

Nika has an appointment at Vanderbilt tomorrow to see what can be done about reducing hospital stays. I don't know if there really is anything that can be done, but it is worth a try. Maybe we are missing something like keeping her better hydrated or something else we haven't thought of.

So today we are having school, going to the doctor and going to the library for research.

I'll try to keep the updates going a little better this week.

Another Day, Another Stay

2010-01-28T19:29:00.003-05:00

Nika is back in. They sent her home too early, just as I suspected. She is doing remarkably well for having done so poorly the last two days. I am hopeful this one will be a one nighter.

2010-01-27T11:51:00.002-05:00

We are making the adjustment to being back home slowly this time. Usually I just jump back into doing school and try to reestablish our routine immediately but I am just too worn out this time to even try. The kids have dragged out all their playmobil from the garage and are going to try to organize and sell some of it. I have been helping where needed but otherwise have been piddling around all morning.

Nika caught a cold while at the hospital and it is a pretty bad one. She was up all night feeling miserable (and therefore so was I on both points). She's moving kind of slow and wants to be with me. I have Dora on right now so she is contented enough that I can slip away for a few minutes.

The pediatrician's appointment is tomorrow morning. I am choosing to not think about it today. :)