Wednesday, January 27, 2010

Calgary Trip

We had a FANTASTIC time in Calgary this past weekend. We've been saving up to go to Calgary ever since Paul and Kristal moved there (Alex's brother and sister-in-law). Alex's favorite hockey team has always been the Calgary Flames...so you can guess where we were headed the first night we got there...

We arrived early to watch the warm-up, enjoyed some really expensive hot dogs and beer! Brodie was lucky to have a couple warm-up pucks thrown over to him.

The highlight that Paul was bursting to tell us, was that he had managed to get us on the guest list to meet the players, post-game. Alex has been on 'cloud 9' ever since...

All the players were great, and willing to stop and chat (and sign a few things).
Dion Phaneuf (Alex's favorite player) was a great guy. He was very personable and pleasant. You should have seen Alex's face when Phaneuf gave Brodie his game stick...signed of course. Brodie has been showing everyone his stick, and today he wore his Flames Jersey (also with signatures) to school. The rest of the weekend conversation revolved around the experience and it was amusing to hear Paul and Alex parroting what the players had said.

The rest of the weekend was nice and relaxing, with some sleeping in and a bit of sight-seeing. We went to Banff for lunch...

Did a bit of shopping...

And spent some wonderful 'down-time' at Paul and Kristal's. Brodie became more comfortable with Nash (their dog), each day, and was giving him treats by the end. It was convenient that Paul and Alex were happy to play Wii with Brodie, because that was Brodie's other highlight of the weekend.

I enjoyed a Starbucks and a book while they played Wii and thouroughly enjoyed myself. The girls were at a 4-day respite weekend, with the respite couple who takes the girls once every 2 months. Ashley did great, and Hope had a bad spell because she started vomitting again while she was there. But thanks to the wonderful Palliative Care Team, we had the Ganisitron ordered and delivered to their house quickly, and Hope responded well, so we didn't have to come home. Hope is doing well now, the med and the slow pump feedings really help her through those episodes.
This 4 day break was definitely the best one yet. I feel so rested that all my neck and shoulder pain is gone. The only time my neck started to seize up, was when I was on the phone dealing with Hope's problems. Apparently stress makes pain! I should know that by now.
We were very lucky that Paul and Kristal were willing to host us and we are thankful for their generosity and enthusiasm to have us stay with them. Thanks guys!


Wednesday, January 20, 2010

Hope

I sat Hope up just now, so that I could snap a photo for all of you to see. The pump has been a huge benefit. Running the feedings over 2hours has elminated the vomitting and now we can pick her up a bit more. Although, her copious amounts of secretions make her start coughing and sputtering, so we don't hold her up for long.

Ashley and Brodie are doing great. We had a few more appointments this week, to keep everything on track, and it's all good. I've been so lucky to have a lot of respite help this month, so that my neck can continue to heal.

Wednesday, January 13, 2010

A good week...

Only a few appointments this week and the girls are doing about the same. Ashley still smiles when we hold her, and Hope gives us slight smiles when the right side of her mouth quircks upward. Hope is still coughing a LOT due to secretions but luckily the feeds go slow enough that she isn't vomitting.

Friday, January 8, 2010

Appointments

video

We've had a LOT of appointments this week. Hope's feeding issues were discussed with Dr. Remple and we decided to start using a pump to deliver formula slowly, trying to avoid the vomitting by having less in her stomach. We've also switched her to a stronger antacid. So far it's helping.

Ashley had appointments for her stander and wheelchair adjustments, she's grown again. We'll have to have more appointments to build a new head support for the stander (her head is bigger than when it she was 2yrs). We'll also have more appointments to have a new back support created with gel foam and a special wedge. She's so skinny that her bones are sticking out and she gets red marks very quickly in her chair. We worry about pressure sores when this happens. We also adjusted Ashley's feeding to see if we could plump her up a bit, but we'll have a follow-up appointment to make sure she isn't getting to plump!

You can see Brodie dancing with Ashley in her stander, if you click on the video above. The video was taken about a year ago. We also had some special foot splints adjusted for Ashley to give her ankles more support when she is in the stander (her feet are looking quite twisted). Then we had the stander adjusted with more straps to hold Ashley in proper position. Her right leg is shorter than the left and it appears that her hip may be coming out of its socket because of all the twisting to the left that she does. On top of that, Ashley has developed a rather large blister on her thumb, and we have no idea why. So, she's been measured for new hand splints.

Brodie had to have some fun this week too! He had his follow-up eye appointment and he has surpassed his goal. We are officially done patching. His vision in the right eye started at 20/200 (he could only read the big E on the chart, WITH the strongest lense to assist), and now he can read the 20/30 line with his glasses on. Very impressive. He was rewarded with a membership to Club Penguine, and I've never seen him so excited.

I had my appointments too of course. My neck is still improving. I'm seeing Chiropractor and massage every week, and doing my stretches and excercises. I'm lifting the girls for parts of the day now. My neck still has limited range of motion on the left side, and I'll keep working on it. I had my 'Back to Work' meeting yesterday, and I'll start back with modified hours tommorrow. I'll start with a 6hour shift and work up from there, as long as I don't make the injury worse.

With all that said, you would think I would get a rest, but NO! There will be an unbelievable amount of appointments in the next couple months, but it will be worth it to get everything taken care of by summer. Luckily I have some fantastic respite workers who have been generous in their availability. So, we are well taken care of, and still finding time to rest and have fun.

Sunday, January 3, 2010

We're enjoying a nice quiet afternoon. Ashley is napping and Hope is content (not puking). Happy New Year everyone.