In a stunning turn of events the Grunau’s ended up getting a Nintendo® Wii this Christmas season. It has been more than a few years since I sold my Xbox and my old Playstation has been collecting dust in the garage for quite a long time. So once again, we are the proud owners of a Wii. While I will admit that a PS3 with its Blu-ray and assortment of games did entice me, but the creative game play, the “get my butt” off the couch ability, added with the ability for my kids to play video games from my childhood ultimately won out. So far we just have the Wii Sports and Mario Kart as we bought it in a bundle. But we plan to join my parents (that’s right, my parents had one before me) and get Wii Fit.
So for those of you out there that already have a Wii, what games would you recommend? If you own one I would love to become friends on the Wii and try out some online play. Especially if you have Mario Kart too. The other games I will one day own will of course be a version of Rock Band or Guitar Hero, but until then, I will be mastering Mario Kart. The other thing I plan to do is get a classic controller and buy a few of the original NES® games. Then my kids can really learn to appreciate great games. Afterall, Nintendo® keeps proving itself as a world leader in video games, and has proven that faster, better hardware and graphics don’t make games better. Great game play, and design do! Thanks Nintendo® for years of entertainment and many more to come at the Grunau’s.
Well, it’s official. The regular blog updates have been replaced almost entirely with Norah’s Story. Maybe someday this story will reach and end, or maybe I’ll find time during the holidays to post something worthwhile besides these updates, but until then…
Yesterday Norah had her weigh in. After a long wait at the hospital to get a quick weight and check (so I’m told as I couldn’t be at this appointment), we found out that Norah had only gained 56 grams in 5 days, which is just under 2 oz. Wow is what I thought. That’s it? This little bit of growth for the hours of work? I guess it could be worse, she could have lost weight. But come on. So the next plan is to increase the concentration of formula we mix into her bottles to the maximum strength. We had tried this a couple times already, but found it bothered her stomach, but I guess we will just have to deal with that now. But the best part of this new plan is that we have to wake her up at night to feed her. So her 2am to 8am stretch of sleep will now be interrupted. Norah won’t mind though as she has been learning the art of feeding in her sleep. This has actually been the best way for her to eat, but now it means alot less sleep for us.
So we will add one more thing to do to get Norah to gain weight and hope this one does the trick. The benefit of this last ditch effort is that we won’t have to be learning how to use an NG tube over the holidays. However, on Dec 29th we will go for another weigh in, and if she hasn’t made significant progress by then, we are quite positive she will need the feeding tube then. Please pray that Norah can gain weight over the holidays. So while you are finding it easy to gain weight over the holidays with Christmas baking, turkey and stuffing, remember that not everyone has it so easy. Please keep us in your prayers over the holidays.
Until next time.
Well today was abit of a whirlwind. We decided to take Libby with us to Norah’s appointment with the cardiologist. The problem was relying alittle too much on Libby waking us up in the morning. Therefore, when Libby slept in till 9:30am and we had an appointment at the hospital at 10am we were abit rushed out the door. Somehow we got two kids ready, gave Norah some meds, got a bottle ready, and out the door to the hospital and through admitting in 35mins!
Norah’s checkup revealed much the same as it has always been. There hasn’t been any change in the hole in Norah’s heart and for the first time the cardiologist told us that it would require surgery. The nurses and other health professionals had been hinting towards surgery for quite awhile, but the cardiologist had still been hesitant to say those words until he was sure. This was the first time the cardiologist didn’t increase her meds, but this is because she is at the highest dose that they would give her. We have been told that they will most likely do surgery when she is 4-6months old, which would be sometime after February. However, she is still having trouble gaining weight. This is the area they are most concerned with. So we have increased the formula we mix in her bottles in an effort to add more calories. We will monitor her weight gain over the holidays and if things don’t progress like they should, then we will have no choice but to use a feeding tube. Please pray that Norah can gain weight without having to use a feeding tube. We are desperate to do whatever we can to avoid this. They have also said that if her weight gain becomes a bigger issue that they will also have to think about pushing up the surgery.
We have been blessed with great care from the staff at the Pediatric Cardiology department at RUH. They are actually connected in a network of other departments like theirs from all across Western Canada. They meet weekly via video conference to discuss cases before they get to surgery. This next week, Norah will become part of that discussion. So now we have not just one expert cardiologist but a whole group from around Canada talking about Norah. This group is who will ultimately recommend when Norah gets surgery. We are so thankful for these people and the skills God has blessed them with.
So we will go into the holidays knowing she will get surgery and doing everything we can to get her to gain weight. All the pumping, feeding, and medications with a long stretch between now and Jan 4, when our next appointment with the cardiologist will be, could add up to a stressful Christmas. We are thankful that we where able to purchase a very nice electric pump which has made all this quite abit easier. Through all of this we know that God has everything under control. Despite everything we can say that we have peace. While it has been hard and will continue to try on us, we know who is in control. We also are very thankful to all our friends and family for your prayers. Until next time.
Just a short update on our cute little bundle. Thursday marked another return to the hospital as her meds got increased yet again. In the process she got weighed and checked over again. This time we got the news that she wasn’t gaining as much weight as she should be, even with the supplemental feedings from a bottle. As well her breathing had increased again. They would like it to be about 45-50 breathes per minute and her’s was up over 85+. Yikes! They might have to look at changes her meds again when we see the cardiologist again next week. Her little body is just working so hard that she doesn’t have the energy to breast feed naturally. If she doesn’t start gaining weight than they might have to look at giving her a feeding tube. We really want to do everything we can to avoid that. So we have switched to feeding her from the bottle all the time. However, this means Dawn had to pump ALL the time. Therefore we had no choice (unless Dawn wanted to gain huge forearms from using a manual pump) but to buy a very expensive pump. During the months ahead it will get a ton of use and it will also help Dawn to maintain her supply so she could return to breast feeding when the heart issue is fixed. It will be great to have this pump, but financially this was the worst time for this. With Christmas season here, house in the middle of renovations, it wasn’t the best timing. But we know that God will provide as He always has in the past. Please continue to pray that Norah would gain weight and that the God would give us peace and rest. It continues to take its toll on us; especially Dawn. Between pumping every few hours, feedings, medication, the stress of what’s going on and Libby; she finds it very exhausting and is constantly looking for ways to find a nap. On top of that we have been averaging 3 appointments per week. However, I am constantly amazed at my amazing wife. Somehow in between all this she has managed to bake TONS of cookies and Christmas goodies! She deserves the “Mom of the Year” award.
As always we continue to be thankful to all our friends for their support. We will continue to lean on you.
In His Service…
I don’t think I’ve said it here often enough, but I really love my job at Ranger Lake Bible Camp. One of the biggest part of my jobs is being in charge of all things creative. Like a Creative Director. Anyways, as we are gearing up for the summer of 2010 I have been busy lately getting posters, brochures, t-shirts and the like ready for promotion. I am very pleased with this years design and with the theme of Believe. Here is the official desktop wallpaper that shows off the design. It is from this design that all my other designs will take their influence. I decided this year to go with a much more typographic treatment as compared to the heavy graphic components of last years theme. You can download the wallpapers for your desktop and iPhone/Touch below.
As we look to our theme, what is something you believe in?
1024×768 / 1280×800 / 1280×1024 / 1440×900 / 1920×1200 / iPhone/Touch
The journey on Norah continues, read the whole story here if you haven’t yet.
So today was another appointment for Norah at the cardiologist. She got weighed again, got another ultrasound/ECHO to checkout how her heart is doing. Not much has changed with her heart. In fact, they believe she has another very small heart issue, however, this other problem is actually benefiting her by lessening the issues caused by the hole in her heart. This other small problem isn’t something they are concerned about and aren’t even treating it. So it’s kind of a blessing in surprise.
So with no change they are once again going to up her medication as well as we are increasing supplemental feeds to help her continue to gain weight. From her previous checkup she had gained weight, just not as much as previous. We got alittle bit more of an answer about possibility of surgery, but the answer was “we’ll wait till January to decide”, so it was really just prolonging this, but it does give more chance to allow her body to “fix” itself so she still has a chance of not needing surgery. So right now we will continue to give medications, extra feedings, extra doctors appointments, extra everything it seems. We are really getting exhausted and could use a night of really good sleep. Please continue to pray for our energy and stress levels as it is all still overwhelming even as it has set in.
The last “fun” thing is that we found out this week about RSV. Before this week I had never even heard of this. Anyways, RSV is basically a type of cold virus. In fact, many adults, and children have had RSV or have at least been a carrier of it without knowing it. They probably just treated it like any other cold. However, to an infant with a Congenital Heart Defect catching RSV could be rather life-threatening. So if you are around us and have a cold we won’t let you hold her. Sorry, it’s not your fault, but Norah could get really sick from you. Don’t take it personally, but our kid is MUCH more important than your feelings. I’m sure you’ll all understand. The good news is that she can be immunized against it. Thankfully Sask Health covers this immunization if your child is “at-risk” like Norah, otherwise it costs $1000 per shot and she will need it every month, especially during cold/flu season. Thanks Universal Health Care!
Thank you to everyone for your prayers and support. As this journey continues we know that we will need more of your prayers and support and know that our wonderful friends will be there for us when we need it.
So it looks like this might be the colour for the guys shirt and the girls shirt will stay the same as originally posted.
Just a quick follow-up to my previous post. I mentioned the possibilities of there being tshirts for sale to raise money for adoption. Well, here are the first mockup images of what the tees could look like. I am really excited about this as I am told that there are numerous other families in much the same situation as Darrell and Jessica that would appreciate these shirts as well. I am excited that Poetic Industries work could help people again as it has been awhile since the first Watoto Project and the shirts that got printed then.
While these shirts aren’t for sale just yet, if you would like to buy one please comment and I’ll make sure to let you know when they become available.
Some good friends of ours, Darrell and Jessica Braun, are currently in the process of adopting twin girls from Ghana. I am helping where I can with this great event and would love to see you all out on January 9th, 2010. Even if you don’t know them, you can come hear a great band, eat some Steak and bid in the silent auction and know that you are supporting a great cause. Adoption is such a wonderful thing, in fact I believe that more of us need to adopt, but I won’t get into that now. Please check out the facebook page for info. Oh, and I almost forgot to mention, one of my ways of helping was to design this poster. What do you think of it? Would you buy it if the graphic was re-purposed for a t-shirt?