Wonderful Wednesday Clinic Visit

I was more nervous about today's clinic visit than I had been about an appointment in a while. Olivia has been snacking pretty much non-stop since our visit last week but she didn't seem to be gaining weight. We got up extra early this morning so I could make sure she had a good breakfast before we went to clinic. Inevitably the earlier I get up to try to get us out the door the later we end up leaving so we didn't get to clinic until after 10:30 this morning. We got into a room and then waited for the big moment...the scale. I had been a nervous wreck for no reason, Olivia's weight this morning was exactly 15 KG! No nose tube! I showed our nurse practicioner my notes of everthing that Olivia ate and drank over the last week. He sent a copy to the diatician and they were both impressed by the variety of foods Olivia is eating. She refuses to eat anything I actually cook, she'll eat snacks that I prepare at home but other than that she only wants chicken nuggets, french fries, and pizza. Ideally they'd like to see Olivia around 16.5 KG so she still has a bit more weight to gain. At least the concern about an NG tube is gone for now! Since we got there a little later in the day it seemed to take a little longer for us to get Olivia's lab results and get seen by the doctors. Dr. Paul was very impressed with how Olivia is doing. Olivia was so happy to see him by the time he finally got to our room that she was quite talkative and she told him all the colors on her flash cards and then even told him that he was wearing a pink shirt. To be fair the shirt was pink and blue stripes but pink is Olivia's favorite. Then she asked Dr. Paul to help her get down and put her boots on. Dr. Paul has 2 little girls of his own so he's really very good with her. It was fun to watch them interacting with each other. The best news from today's visit is that they are going to continue to decrease her steroids! As of today Olivia is on a small enough dose that it's no longer considered therapeutic. This means that she's not getting enough of the stuff to cause any of the nasty side effects and her muscle tone should rebound quickly. Other than that they are going to begin drawing blood for Olivia's 6 month post-transplant tests next week. The 6 month post-transplant tests include some cognitive and behavioral testing as well but those are scheduled for the first week in February. Olivia's 6 month post-transplant date is actually January 23rd but we had some scheduling issues so most of her other tests will end up being a week and a half past the 6 month mark but it shouldn't affect the results too much.

It's been entirely too long since I've posted pictures so here are some from our clinic visit today.

Apparently Olivia thought that Peter needed a pat on the back.

Tuesday's Gone

and I am happy to see it go!

Today Olivia had back to back therapy appointments, Physical Therapy followed by Speech. I tried to plan accordingly and was able to delay Peter's morning nap until immediately before the first therapist arrived. Olivia was excited to see the physical therapsist initally but then things went down hill quickly. Olivia tends to like enthuiastic people, I'm pretty enthuisastic and peppy most of the time so she relates well to people like that BUT Olivia doesn't really like "in your face" enthuiasm and cheerfullness. The physical therapist is trying hard and I think that Olivia somehow decided that she's trying too hard and decided that she doesn't want to respond. Olivia spent the entire time grunting or crying. It was painful for all of us. Olivia is being pushed to do things that she doesn't want to do but she needs to do them so that she can get stronger. The speech therapist arrived just as the physical therapist was finishing up so I ran downstairs to let her in as Olivia was coming down the stairs with the physical therapist. I slipped and fell down the stairs right in front of the physical therapist. I'm totally fine, fortunately I have plenty of padding, just embarassed!

As soon as Olivia saw the speech therapist she walked right over to her and said "hi". This is after we all sat through a painful hour of her grunting and crying at the physical therapist. I felt so bad for the physical therapist, she had tried so hard to get Olivia to relate to her. The speech therapy session didn't go much better than physical therapy but Olivia did talk some. Peter woke up midway through so taht did make things a little more challenging. I'm just glad we got through the two sessions.

I finally was able to connect with the preschool coordinator in our new school district. Things sound promissing but we'll see how they progress, it's too soon to say for sure. I do know that they will be able to provide home based services and we should start early next month.

I'm still anxious about Olivia's clinic appointment Wednesday. She's eating but not gaining weight. For now I'm just glad that Tuesday's gone and we can worry about tomorrow tomorrow.

Monday Ramblings

I think I had one too many cups of coffee this morning and have been a little hyper all day so here's the random things going through my mind today.....

• I am actually really glad that I didn't go back to bed this morning at 5:30 when Mike was banging on the window because he'd locked himself out of the car.
• Speaking of getting up early, I love the new elliptical machine and I wonder when I'll stop calling it the "new" elliptical machine.
• Speaking of working out, I'm really proud of myself for not eating any of Olivia's peanut butter M&M's!
• Speaking of Olivia eating, she's eating almost constantly but she's not gaining any weight! I'm nervous about Wednesday's appointment.
• Speaking of Wednesday's appointment, I am excited to report to Dr. Paul how impressed the physical and occupational therapists are with Olivia's progress
• Speaking of Olivia's progress, I love her new therapists and I've even happier that Olivia seems to like them too, even when she gets mad at them for making her work hard.
• Speaking of Olivia working hard, it amazes me how easy so many things are for Peter. Now I realize that he just naturally does so many of the little things that I worked so hard to help Olivia learn to do. I hate that SanFilippo syndrome brings so much bittersweetness (is that even a word) into our lives. It's sweet to see Peter do new things, but bitter to know that Olivia had to work so hard to accomplish those same things.
• Speaking of being a mom of kids with special needs, I am absolutely all for awareness and finding a cure and fighting but for now I think I need to take a break from all of it
• Speaking of taking a break from all of it, I know my friend A. knows what I'm talking about, her mom recently passed from Breast Cancer but she's struggling to jump back on the Breast Cancer Awareness/Research Support/etc bandwagon. While I haven't faced anything nearly as devastating I know exactly what she's talking about but she's able to express herself so much more eloquently.
• Speaking of friends, I had a fantastic conversation with a friend today and I love that we know exactly what the other is trying to say, I wish we lived closer to each other.

Can you tell we've been reading a lot of those "If you Give a Mouse a Cookie" books? Olivia got several of them for Christmas and we've been reading them often. If you don't know what I'm talking about you'll have to stop by your library and check one out

Thrifty in 2010

For our family it's an absolute blessing that I'm able to be a stay-at-home mom these days. However the transition from being a two income family to a one income family is always difficult. I think Mike and I both felt that we had prepared well for our marriage, we went to all the marriage preparation classes, we even attended an Engaged Encounters retreat sponsored by our church. The one area in which I feel we were completely unprepared was finance! To be honest it just never really came up. We both came from completely different places. I was more of a have money, spend money, kind of gal. It's one of my New Year's Resolutions to be more thrifty in 2010. To that end we've made some changes in the way we budget and spend our money around here.

First we are trying to use cash rather than our debit card as often as possible. At the beginning of the month I withdrew a large sum of cash from the ATM then I divided it up into envelopes for different categories....groceries, entertainment, etc. If you haven't heard about the envelope method you google it, I was surprised to see it in Wikipedia (although I'm not sure why, everything is in Wikipedia). So far it's working really well for us! I was definitely guilty of just tossing random little things into the grocery cart. Knowing that I only have a certain amount of cash to pay for everything in the cart has made me more selective.

I'm also debating cutting coupons. I know that some people are totally obsessive about it and that their hard work really pays off. I'm just not sure that it will work for us. Olivia is a really picky eater lately so I think a large portion of our grocery budget is spent on getting different snacks and treats for her. It seems like it can be really complicated. I generally try to shop at the commissary on base where you don't pay any tax and I had always thought I was getting a great deal. I just realized that they charge a 5% surcharge which can be more expensive than tax! I'm just not sure I'm ready to commit to the coupon thing. Does anyone have any success or failure stories that might help me decide?

My favorite discovery of the weekend was Aldi grocery stores (http://www.aldifoods.com). I had read something somewhere about Aldi and I was excited to see one when we were driving around the other day. I made my first trip there over the weekend and I was pretty impressed. It's a different shopping experience. It's similar to a SAMS or COSTCO but they primarily have grocery items and there are not any membership fees. There are not any store displays or decorations and the store itself seems smaller than your typical grocery store. You rent your cart for 25 cents, when you return your cart then you get your quarter back. You also have to bring your own grocery bags and bag your own items. It sounds a little strange but I know that Aldi is also owned by the same company that owns Trader Joe's and I'm a huge fan of Trader Joe's. It turns out that the Food Network has even done a special on Aldi's and many of their store brand items are actually regular old name brand items that have been repackaged as the Aldi brand items and sold at a discounted price. In any case I went over the weekend and got some really great deals! Mike was more than $1 less than it was at the Commissary and eggs and bananas were much cheaper! They even had beer and wine! If you haven't been to Aldi's and there's one near you check it out!

If you have any other ideas about thriftiness please share! I'd love to hear 'em!