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.