hospital again

Just a quick update. Eve was back in the hospital this weekend. Friday we had a scheduled appointment at CHOA Scottish Rite to have her g-tube replaced with a button. That way we can attach a tube when needed and there isn't a long tube dangling that can get caught when not in use. Anyhow, we were shocked because they didn't sedate her or give her any anesthetic. They just popped that tube out and inserted the button. Of course, she screamed bloody murder. Well, the rest of the day she was super sensitive and guarding her stomach. We went home and she cried nearly the whole way. She didn't really want to eat or drink. That night she was up every 30 minutes or so. We had her on constant doses of motrin. Well she got a fever in the middle of the night. When we brought her to Dr. Setia on Saturday morning, she had a temp of 103.9. Highest it's ever been. He examined her and called the GI doc on call. Then he sent us to Athens Regional. They used contrast dye and an xray to be sure the button was placed correctly (in the stomach instead of between the stomach and abdominal wall). Fortunately it was, so they started treating her for infection there (rather than transporting her to Scottish Rite). So, they've got her on heavy duty antibiotics. Sometime last night her fever broke (maybe around midnight). This morning she actually ate a few bites of grits and jello and was in a pretty good mood. Dr. Setia stopped by and said that they'll take out the IV and if she continues to have a normal temperature, she might be able to go home tonight. :) Happy Mother's Day! Feel free to call our cell phones. We won't answer if we can't talk.

Over due post

Things have been so busy lately, so I am going to bombard you with pictures. Here's a shot from my birthday. Both Kirby and Josie were super excited that I was turning 33. They even wore party hats!

Eve was super excited about the cake. Some of it made it in her mouth. But she had fun trying.

Speaking of having fun...Here's her walrus imitation.

By the way, you'll notice that Eve got a haircut. We got tired of her wild-woman hair. Combing out dreadlocks is not too fun. Her curls really show up now that her hair is shorter.

I had gone strawberry picking last week (amazing how fast we went through a gallon of berries). Eve helped me make a strawberry pie. Here she is helping with the crust.

She also helped me mash up the strawberries and measure and mix the filling. She seemed to like it so much we gave her some measuring cups, spoons, flour and water. She was "cooking" and had a blast. She cried when it was time to clean -up. She had so much fun "cooking" that a shower was necessary.


Here are some more shots of that haircut.

Oh, Josie's boyfriend was calling here. Jim gets a kick out of telling Josie her boyfriend is calling to ask her out (or break up with her). Eve laughs every time.



On to other news. We went to the neurologist on Monday. I was slightly disappointed because I really hoped that he'd fix the whole Shoffner thing. Instead, he will call but expects to hear the same thing we've heard. Now I almost fear it will take even longer. Dr. K kept saying things like getting Eve's new docs in touch with Shoffner. Whaaaat? I really hope he doesn't think that this stuff won't be done by the time we move this summer. *deep breath* I'll call next week to see what I can find out. I am nervous that my insurance will end before he decides to bill them. Ug. *deeper breath* Anyhow, Dr. K looked at Eve and made her smile. He's going to find us a pediatric neuroligist in Albany and we'll see a mito doc in Boston. He also is taking Eve off the CoQ10 to see if she shows any declines. If not, we can keep her off. It hasn't improved anything, so it might not be doing anything. After that we go off the levocarnatine. This will be a help because the CoQ10 is so expensive.

We found a house

Last week Jim and I flew up to Massachusetts to look for a house. It was a whirlwind, but we were successful. We even got to visit with dear friends from the area. Eve stayed home with Grammie and Papa (whom we can never thank enough). We looked at maybe 12-15 houses in 3 different towns. I would have liked to look in VT, too (it's only 4 miles away), but we decided to stick to MA because Eve's doctors will all be in MA. We are hoping to get the MA equivalent of the Katie Beckett waiver and figure it would be best to stay in state for care.

Anyhow, we found a place that needs a little updating here and there, but will suit us well. It's in a really nice town with a prestigious college (not the one I will be working at) and a great school system. Everyone we talked to seemed to think that this town would be our best bet for school system (and special ed). We were pretty lucky because just as the seller accepted our offer, his realtor told us another couple had just left the house to go write up an offer. How this didn't turn into a bidding war I will never know. We spent some time with the seller's realtor (she actually was representing a few of the houses we looked at) and got along famously with her. She is a riot. Anyhow, it is my secret fantasy that she was rooting for us. Whatever. We got the house. Now the mad dash begins. Inspection to schedule, loans to arrange, and what else? Oh yeah. Sell our house in GA. Start praying, people. The house is cute and in good shape. It needs curb appeal. We'll need to put on some real siding and we'd like to build some sort of porch. We'll need to get a walkway (pour concrete or something) because it's currently gravel. We'll also need to figure out how to gain access to the house from the garage to keep Eve and her wheelchair out of the snow in the winter. (Know any architects that are looking for pro bono work?) It's got a full basement and the garage is deep. Plenty of room for Jim's tools (a plenty). We're very very happy. Here are the pictures that I snagged from realtor.com. We'll probably move sometime in July or August.

rainy day

Well, I realized this morning that I am officially an out-of-control dog owner. Picture it: 7:30 am and it's pouring rain. I have to drag Josie off the front porch to go to the bathroom before I leave for work. She is literally planting all 4 feet and refusing to budge. I finally get her off the porch and as I am standing there, holding an umbrella over my dog as she takes a dump, I realize I am not the dog owner I thought I would be.

bummed

I've been really sad lately. I don't know if it's because I've been anxious for these test results and thinking about Eve or what. Another possibility is that we're searching for houses in Massachusetts and the simple fact is that we need a bedroom and bathroom on the first floor. So I am constantly reminded of our situation. Plus, I can't help but look at her beautiful face and grieve for her. I grieve for what she cannot do and will not achieve. For what she misses out on. I have to tell you there is a lot of guilt associated with being the parent of a child with a life limiting disease. Every time I lose patience and every time I am frustrated with what I assume is probably typical 3 year old behavior, I feel guilty. That I should be holding tightly to every moment -good or bad. And the worst is being around typical kids her age. I found out that one of the little kids at daycare is just 2 weeks older than her. God, it's hard to watch him run. I'm so jealous of his mom when she picks him up from daycare. I want to be able to ask my child what she did today.
Anyhow, this is the reality of my life. I try not to let this out often, but sometimes I just need to vent and have a good pity party. Mission accomplished. I am lucky to have the friends and family that I do. Thank you all very much for your prayers and support. I'll go ask Jim to make me laugh now.

Here chickie chickie

Here's a cute video I took on my cell phone, so I apologize for the poor quality. The sound is good, and that's what's the most important. Eve's teachers gave her this windup chick and she LOVES it. Actually, what's really funny about this video is that Eve laughs so hard she farts. You can barely hear it, but that's what set's Jim off laughing so hard.


Her cough is so much better. We've dropped all breathing treatments but the pulmicort and we'll likely stop that this weekend. She rarely coughs. She's been waking up a bit at night, but is crying, not coughing. Just for record's sake, I want to mention that yesterday Grandma Jan (daycare) said she thinks Eve is having more trouble holding her head up. I'm going to have to take notice and ask school to look for this as well.

I finally got a hold of Dr. S's office on Monday. They said they are backed up and it will be another 3 weeks until the DNA sequencing results are in. Then the guy I talked to said he was going to try to pull some strings and that I should check in next week. *sigh* I can't even describe my anger and frustration. Yesterday afternoon someone from Dr. K 's(Neurologist) office called to let me know that they hadn't forgotten about me and that they called Dr. S's office and that Dr. K had personally called Dr. S directly (but I think didn't talk to him yet). She also told me that I was not the only one that Dr. K was calling Dr. S about. In a wierd way that is comforting. I hope Dr. K flexes his muscles just a bit and has some influence over the speed of our results. Anyhow. Hope all is well with you.

cough is better

Eve seems to be doing much better. Two nights ago she only coughed once. Last night, 3 times. This is great news. Both school and daycare say she is coughing less. I am looking forward to being done with the nebulizer. Eve is definitely over it. Jim keeps telling her that Dr. Setia says she has to take this medicine. Nice scapegoating. Anyhow, I am not surprised that she doesn't care for the nebulizer. This is the kid that gags on wind, after all. I'm not kidding. Wind.

Here are some pictures of Eve (and me) from the hospital last week. Just hangin' out.



I am super frustrated that it's been 5 months since the DNA sequencing began. I have called every week for the last 3 weeks and have not received a return phone call (even if it is to tell me they haven't finished it). The office voicemail says that due to HPA (or is it HPPA) they are not allowed to give testing status to parents - only to referring physicians. I smell bullshit, but whatever. So today I called in the big guns. I called up Dr. K and left a message asking him to please check on the status of the testing because it's been 5 months and they are not responding to my calls. The last time I had problems with this office, I went to him for advice and my problems were magically solved after a phone call from him. I hope a repeat performance will happen. Oooo it just makes me so mad.