Some of you may notice that Eve's Kiddie Pool amount has changed. Now that we are taking more trips to Nj, it is apparent that Eve's car seat is not working for her. She spends most of the trip slumped forward (asleep or not) which is neither safe nor comfortable. Britax makes a car seat designed for special needs kids. It will allow for some reclining (to keep her from slumping forward) and has much better head support. We also think it will be more comfortable for her and *might* reduce some of the crying in the car.
We asked several of our kiddie pool donors if they would mind if we switched their donation from the chair to the carseat. So, we are able to get the car seat right away, but will set our goal back a bit for the positioning chair. Since her car seat is a more pressing need, we think this is the right decision.
Monday, August 31, 2009
Sunday, August 30, 2009
So, I am feeling much better and recovering from my cold. Unfortunately, Eve woke up with it this morning. So, she's been a little fussy(er). Jim had a great idea and made up a play house from one of our moving boxes. Eve loves it. So cute.
Here's a cute video of Eve and JoJo from yesterday:
Here's a cute video of Eve and JoJo from yesterday:
Oh, lesson learned today. Don't feed your child yogurt for snack and then take her to the playground and swing the crap out of her. Or should I say, the puke out of her. Enough said.
OCNJ
During the first part of last week, my parents, Eve and I went to visit my brother and his family at their rental house in Ocean City NJ. This is where our family has vacationed since I was 6. You'll be able to look to last year's post when Jim, Eve and I were able to visit.
This year was lots of fun, but Jim was sorely missed. By my back. Which was sore.
It was hard work carrying Eve around and holding her up in the water, but my family helped. Eve had an absolute blast. She squealed like no other when she got to jump around in the waves. Here are some shots of her and Dave playing in the sand:
One morning, we went bike riding on the boardwalk. Well, Dave, Trina, and the boys went bike riding. My folks, Eve and I rented a surrey. It was lots of fun! Eve really enjoyed herself.
This year was lots of fun, but Jim was sorely missed. By my back. Which was sore.
It was hard work carrying Eve around and holding her up in the water, but my family helped. Eve had an absolute blast. She squealed like no other when she got to jump around in the waves. Here are some shots of her and Dave playing in the sand:
One morning, we went bike riding on the boardwalk. Well, Dave, Trina, and the boys went bike riding. My folks, Eve and I rented a surrey. It was lots of fun! Eve really enjoyed herself.
Alex calls this "hop on Pop"
Alex was wonderful with Eve. He is so sweet to her. Here they are lounging on the deck.
Alex was wonderful with Eve. He is so sweet to her. Here they are lounging on the deck.
Oh, and the first morning that we went to the beach, Alex just made my day. I took off my coverup to go down to the water, and he looked at me and said, "That's a cute suit!" I could have kissed him. I'm so glad I bought that suit. Even 6 year olds appreciate it.
So, thanks to Dave and Trina, we had a wonderful visit. They were so generous to open up their vacation and let us crash. Thank you!
surprise party
Last weekend we went to NJ to visit my parents before Eve and I joined them and my brother's family at the beach. What my parents didn't know was that my brother had organized a huge surprise 40th wedding anniversary party. They were completely shocked and there were so many wonderful friends and family members there to share in the celebration. What a fantastic day!
Here they are walking in:
Here we are with my nephew/godson Giovanni. He had fun riding Eve's chair (with her in it). If someone sends me a picture I'll post it.
The happy couple
Here they are walking in:
Here we are with my nephew/godson Giovanni. He had fun riding Eve's chair (with her in it). If someone sends me a picture I'll post it.
The happy couple
Friday, August 28, 2009
No thanks; we live with it
I'll write up a longer post this weekend. Right now I am exhausted and I have a cold. So I am going to sit on my butt on the couch. But, we spent almost a week in NJ. Had a surprise party for my parents' anniversary and then went to the beach with my brother and family. Lots of good pics; Eve had a ball.
However, I did want to mention something. I was leaving a store today when I was asked if I wanted to donate to Muscular Distrophy. I smirked and pointed down at Eve in her wheelchair and said, "No thanks." The lady looked shocked and said, "Of course!" Is it wrong that I got some weird sense of satisfaction about this exchange? Talk about the perfect excuse.
However, I did want to mention something. I was leaving a store today when I was asked if I wanted to donate to Muscular Distrophy. I smirked and pointed down at Eve in her wheelchair and said, "No thanks." The lady looked shocked and said, "Of course!" Is it wrong that I got some weird sense of satisfaction about this exchange? Talk about the perfect excuse.
Thursday, August 20, 2009
GI doc and diapers
We took Eve to get her bangs trimmed. They are a little on the short side, but at least they are out of her eyes. We plan to go to the beach with my family next week, so this will be good for the wind and water.
Here's a shot of the two buddies. Fighting for the chair or trying to be close? You decide.
Ask Jim to tell you the story of this picture. It's funny. Jo was licking Eve's finger and and Jim was taking this picture, she applied slight pressure with her teeth. Perhaps testing. Anyhow, Eve screwed up her face in surprise and Jim yelled at Josie. Apparently it happened in slo-mo.
Yesterday I took Eve to the new pediatric GI doc in Springfield (almost 2 hours away). I was not impressed. It just wasn't a good fit for me. The Dr. didn't even address Eve's mito and I don't think she really took any time to get to know Eve and her situation. She wants to see Eve again in 3 months, but there is a satellite clinic in Pittsfield (30 min away). I think we'll try to get an appointment with one of the other ped GI's in her practice. This doc also wants us to drive to Springfield in October to see a nutritionist and an OT (I guess to discuss Eve's eating). I'm going to call today or tomorrow to cancel that appointment. I just can't take a day off of work to drive 4 hours round trip for that. Eve's diet is fine and her pediatrician can talk about what she should or should not be eating. She'll be getting OT at school. I'll save trips like that for emergency situations or for a pediatric neurology appointment. Oh, but the GI did prescribe Zantac for at night (and wants her to keep the prevacid during the morning). We'll see if that helps.
On the plus side, MassHealth will be providing diapers for Eve (and delivering them to our house!) because she is over 3 and incontinent. I put that into motion today (called the doc asking for a script and contacted the medical equipment supplier). I am super excited about that. We were doing cloth diapers off and on for a while, but I have to admit, this will be much easier (especially between school and daycare). I know it's less eco-conscious and I feel some guilt about that, but I need to make life as easy as possible right now.
Here's a shot of the two buddies. Fighting for the chair or trying to be close? You decide.
Ask Jim to tell you the story of this picture. It's funny. Jo was licking Eve's finger and and Jim was taking this picture, she applied slight pressure with her teeth. Perhaps testing. Anyhow, Eve screwed up her face in surprise and Jim yelled at Josie. Apparently it happened in slo-mo.
Yesterday I took Eve to the new pediatric GI doc in Springfield (almost 2 hours away). I was not impressed. It just wasn't a good fit for me. The Dr. didn't even address Eve's mito and I don't think she really took any time to get to know Eve and her situation. She wants to see Eve again in 3 months, but there is a satellite clinic in Pittsfield (30 min away). I think we'll try to get an appointment with one of the other ped GI's in her practice. This doc also wants us to drive to Springfield in October to see a nutritionist and an OT (I guess to discuss Eve's eating). I'm going to call today or tomorrow to cancel that appointment. I just can't take a day off of work to drive 4 hours round trip for that. Eve's diet is fine and her pediatrician can talk about what she should or should not be eating. She'll be getting OT at school. I'll save trips like that for emergency situations or for a pediatric neurology appointment. Oh, but the GI did prescribe Zantac for at night (and wants her to keep the prevacid during the morning). We'll see if that helps.
On the plus side, MassHealth will be providing diapers for Eve (and delivering them to our house!) because she is over 3 and incontinent. I put that into motion today (called the doc asking for a script and contacted the medical equipment supplier). I am super excited about that. We were doing cloth diapers off and on for a while, but I have to admit, this will be much easier (especially between school and daycare). I know it's less eco-conscious and I feel some guilt about that, but I need to make life as easy as possible right now.
house stuff
Just some quick miscellaneous stuff primarily about the house. I know I still need to post pictures of the house- it's on the list.
Last weekend, we cooked some pulled pork in Jim's sun oven. It was great! It's an oven that uses the warmth from the sun to cook food. In the right conditions, it can get super hot (I think even up to 400degrees). For us, we cooked from about 9-2 and had periods of clouds, but maintained a temp of about 250. So the pork was a perfect dish. Here are some pictures of it:
We also scored some church pews (for a donation) from a local church that is being sold. I am really hoping that Jim makes me a dining/kitchen table. Our current table is mini-sized because it was all that could fit in our GA kitchen. We have more room here. Poor Jim - I have a list 10 miles long of projects for this house.
Speaking of the list of projects. Oh boy. We knew we needed to redo our bathrooms. Here are pictures of the master bath. Not the cutest, but functional (we thought).
Yesterday, Jim came home from work and took a shower. I then went down to the basement to do laundry and noticed a small pool of water in the laundry room and some drip marks down the wall. Jim went behind the laundry room (our basement is sectioned into little rooms with drywall) and found a bigger puddle and we could see where it was dripping from the joists. Oh no. So, our shower leaks. We're not sure how, but Jim suspects it is getting behind the tiles. So, crap. Well, that bathroom we were going to live with for a long while just got moved up on the list. Since our list is long and expensive, our temporary fix involves not using that shower for a year until we are ready to redo that bathroom. We'll just have to shower in the hall bathroom (and thank God for that one). Ah, the joys of home ownership.
Last weekend, we cooked some pulled pork in Jim's sun oven. It was great! It's an oven that uses the warmth from the sun to cook food. In the right conditions, it can get super hot (I think even up to 400degrees). For us, we cooked from about 9-2 and had periods of clouds, but maintained a temp of about 250. So the pork was a perfect dish. Here are some pictures of it:
We also scored some church pews (for a donation) from a local church that is being sold. I am really hoping that Jim makes me a dining/kitchen table. Our current table is mini-sized because it was all that could fit in our GA kitchen. We have more room here. Poor Jim - I have a list 10 miles long of projects for this house.
Speaking of the list of projects. Oh boy. We knew we needed to redo our bathrooms. Here are pictures of the master bath. Not the cutest, but functional (we thought).
Yesterday, Jim came home from work and took a shower. I then went down to the basement to do laundry and noticed a small pool of water in the laundry room and some drip marks down the wall. Jim went behind the laundry room (our basement is sectioned into little rooms with drywall) and found a bigger puddle and we could see where it was dripping from the joists. Oh no. So, our shower leaks. We're not sure how, but Jim suspects it is getting behind the tiles. So, crap. Well, that bathroom we were going to live with for a long while just got moved up on the list. Since our list is long and expensive, our temporary fix involves not using that shower for a year until we are ready to redo that bathroom. We'll just have to shower in the hall bathroom (and thank God for that one). Ah, the joys of home ownership.
Friday, August 14, 2009
Eve on a horse!
Before we left Georgia, we went to a party with friends and there was a horse. I thought, no way is Eve going to want to get near that thing. No way. She'll have a freak out. Ha. She cried when she had to get off.
Who knew?
Who knew?
Anyhow, today we met Eve's new pediatrician. I love her. She is so nice and she was great with Eve. Eve did great in the office. She only cried when Dr. Art examined her tube site and when she used the tongue depressor to examine her throat. I was very proud. We took Eve because she's been out of sorts this past week and her stoma is really goopy and there is a spot of granulation tissue. The plan of attack is for Dr. Art to call a visiting nurse who does wound care, and if the Rx cream doesn't seem to improve the granulation tissue over the weekend, we'll get a VN to come look at it. In the meantime, Dr. Art is going to try to get us in to see a GI doc in Springfield to see if the new button might actually be too short. Tonight, Jim and I will take about 1 cc out of the balloon that holds the button in place to see if that alleviates some of the pressure. Dr. Art and I agree that since Eve doesn't have a fever, her out of sorts-ness could be due to her trip to NJ (we made a 24 hour trip for a funeral) or starting her new daycare.
Speaking of daycare. Oh boy. Eve has had a rough time of it this week. Apparently, yesterday was the worst. Nonstop screaming at the top of her lungs and refusing to eat anything. So, Eve and I had lots of talks last night and this morning about appropriate behavior. We talked about how it is okay to be scared, to miss mommy, and to want to be home. But it is not okay to scream so loud and so much. She was scaring the other kids with her noise. So, I told the daycare provider that she can give Eve a time out if Eve keeps screaming, and if Eve wasn't good (some crying is fine, but not constant) that she wouldn't get dessert tonight. So, when I picked Eve up for her Dr. appt, it turns out that Eve only needed one time out and that her crying was much better. She even let Erica do her hair. So, Erica made the call that Eve was good enough to get dessert tonight. So, I feel as though the day was successful and I am so proud of my big girl. So proud.
Friday, August 7, 2009
found new daycare
We finally figured out a daycare for Eve. There is a woman up the street (yes, literally) who runs a daycare out of her house. Eve is going to start on Monday (for just 2 hours) and we will slowly work up to a full day. Once school starts, she will only be in daycare for an hour or two after school. We'll be paying for full time day care so that days when there is no school (snow days or vacation), she will have a spot and can go to daycare all day. We could do the half-day program at school, but we have opted for full day because she will actually be learning things and this will provide more opportunity for PT/OT/Speech therapy. I think the therapists will pull her from class to go to a therapy room. What are you going to do, right? We'll see how it all goes. Of course I am nervous about starting a new daycare, but that's to be expected. When we went to visit on Wednesday, Eve cried when we left. I think she just loved being around the kids. I'm just nervous that it will take some time for the daycare provider to learn her (minimal) communication.
I just wanted to write some other things to document them. Yesterday and today, Eve's tube site was goopy. Hasn't been like that in a long long time. Will keep an eye on it. Also, worried about possible cognitive slip. Hate to even think it. But, lately, at meals she has asked for something (eg, milk) and then refused it when you offer it, and then cried for the milk again, then refused it. Sometimes I wonder if she doesn't recognize that I am offering what she asked for. It's almost as if she thinks I am holding out a fork with pasta instead. I am frequently finding myself telling her, "These are your options: milk, pasta, broccoli. Which do you want?" and then I offer them one at a time until she laughs to indicate yes. It's hard not to be frustrated.
I was proud of her yesterday. We had to go to the town clerk to register Josie. I was nervous that Eve would freak out and think it was a Dr office. So I prepped her and talked all about how we needed to register Josie, blah blah. Then I asked her if she wanted to bring a picture of Josie to show the office people. Well, she clutched that photo the whole way there. She was great in the office and never got scared. The funny thing was that they had a bulletin board with tons of dog pictures on it. The lady asked if Eve wanted to put Josie's picture up and Eve said yes (but I don't think she realized it meant we would leave it there). Anyhow, no tears and a successful errand. Maybe I just need to bring another picture of Josie where ever we go.
I just wanted to write some other things to document them. Yesterday and today, Eve's tube site was goopy. Hasn't been like that in a long long time. Will keep an eye on it. Also, worried about possible cognitive slip. Hate to even think it. But, lately, at meals she has asked for something (eg, milk) and then refused it when you offer it, and then cried for the milk again, then refused it. Sometimes I wonder if she doesn't recognize that I am offering what she asked for. It's almost as if she thinks I am holding out a fork with pasta instead. I am frequently finding myself telling her, "These are your options: milk, pasta, broccoli. Which do you want?" and then I offer them one at a time until she laughs to indicate yes. It's hard not to be frustrated.
I was proud of her yesterday. We had to go to the town clerk to register Josie. I was nervous that Eve would freak out and think it was a Dr office. So I prepped her and talked all about how we needed to register Josie, blah blah. Then I asked her if she wanted to bring a picture of Josie to show the office people. Well, she clutched that photo the whole way there. She was great in the office and never got scared. The funny thing was that they had a bulletin board with tons of dog pictures on it. The lady asked if Eve wanted to put Josie's picture up and Eve said yes (but I don't think she realized it meant we would leave it there). Anyhow, no tears and a successful errand. Maybe I just need to bring another picture of Josie where ever we go.
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