April Raffle! Win a custom-made afghan!

As you may recall, we had discussed doing some raffles as a fundraiser to help Aidan get Stem Cell and other therapies. This is the first of what I hope to be a monthly event through the rest of 2009.

What are you playing for this month? I'm glad you asked:

This month, the winner will get to have an afghan created specifically for them by Erin. You get to pick the color(s) and style(s) that interest you. She will then work with you to come up with a design. The design will determine how long it will take to complete the afghan. You will have until the end of the year to redeem your prize.

To enter, simply go to our online store to purchase your chances. You can buy 1 chance for $1 or 6 for $5. If you pay by PayPal, your entries will be guaranteed. You can pay by mail, but your entries will not be added until payment is received. Entries and payments will be accepted until April 30th. The drawing will occur on May 1st after 5PM Eastern time. If you happen to pay by mail and your payment is received after the 30th, don't worry ... your entry will be carried over to next month's raffle.

Good luck!

As for the Valentine-themed afghan Erin talked about raffling or auctioning off, she is most likely going to list it on eBay. She'll post the link to it once she gets it listed.

-- Russell

icky, sicky

I took Aidan to the doctor Wednesday. He started sounding really congested and his left ear had some drainage. The doctor said that he had an upper respiratory infection that was draining into his lungs and causing the congestion. He's been coughing and dealing with that nasty tickle in his throat. It's funny to listen to him because he is so much more vocal right now. He's trying to work that stuff up and making all kinds of noise doing it.

Another good thing is that he's been smiling a lot more. At least I've noticed him doing it more often.

Please say a prayer that he starts to feel better soon. Also, please pray that his seizures start decreasing as we go up on his seizure medication. We want them to completely go away, but it will take some time for that I'm sure. I'd just like to see some improvement so we know that we're moving in the right direction.

Hyperbaric treatments are on hold until after we get the results of Aidan's next MRI. That will be on April 2nd. Hopefully we'll be able to start back soon. We were supposed to start on the 6th. This will be his last set of 40 treatments and then we'll have to come up with the additional funding to continue more treatments. We'll have to see.... figure out where the priorities are as far as therapies go.

The thought of trying to come up with the money for stem cell therapy is daunting to me. That's a lot of money.... I've personally never had that much money, and all I can think of is that it could put a down payment on a house for our family or buy a new van. But trying to make Aidan better is just as important. It's just not something tangible, I guess.... not sure if that makes any sense.

I'm so grateful to everyone who reads this blog, who prays for Aidan and our family or keeps him in their thoughts. I'm thankful to everyone who has passed along his story. With the weather starting to get warmer here, there are going to be more and more accidents like Aidan's. I just pray that passing along his story can save some lives and make parents and caregivers more aware of the dangers of water.

Best wishes to you all! God Bless!
~Erin

today's doctor visit

We met with Aidan's neurologist this morning to go over his last MRI and SPECT as well as the last EEG and the blood work that was done. We looked at the MRI images and compared them to the first ones that Aidan had. There has been little change which is good. The damage that Aidan initially sustained is stablized. We did see the areas where he has had some subdural hemorrhaging. We still aren't sure what caused the bleeds since Aidan hasn't had any visible trauma to his head.

I think the main concern now is to get the seizures under control. Aidan has many, many seizures a day. I can't even keep track of them all. The nurses try and they try to keep a count while he is at school, but there are a lot. We're going up on the Keppra to help control those.

I asked Dr. C if it is possible to get them under control so that he doesn't have them at all and he said that is his goal- to get Aidan to a point where he doesn't have any seizures at all. The Keppra is a "maintenance" drug from the way he described it to us.

Aidan will have another MRI on April 2nd to make sure there is no additional bleeding and to see that the other ones are starting to be reabsorbed. If they look larger or there are more, we will be referred to a different specialist to make sure there is nothing wrong with his blood that would cause this. That's what the blood work was supposed to be for, but he said the specialist would be better suited to do the tests.

Aside from that, the doctor is optimistic. He's always been optimistic. He's willing to try whatever it takes to help Aidan. We couldn't be luckier to have him as Aidan's doctor. He is very pleased at Aidan's progress, which makes me feel much better. Aidan has come such a long way. I just hope he continues to progress and surprise us all.

Thank you all for your prayers and we ask that you continue to pray for Aidan. I'm never going to give up on a miracle recovery, but so many of our prayers have been answered and it hasn't been without your efforts and support along the way.

I'll try to post more soon.
~Erin

Happy St. Patrick's Day

Something exciting happened this afternoon- When Aidan's OT was here she had Aidan in her lap and was laying him back, his head flopped back a little and he started smiling and laughed. She did it again, and Aidan was actually anticipating her laying him back. He squealed out loud he was so excited about it. He was also pulling his arms up to indicate that he wanted to do it again. He squealed another time, too. I couldn't help but cry hearing him laugh out loud and respond to someone playing with him.

Anyway, I just wanted to share that with everyone. I'm so proud of how well he is doing. Aidan seems to be having a good time at school too. I have a meeting in the morning to review his IEP and go over the feeding issues. Hopefully we can add a feeding goal to his IEP. He is doing really well at home and will occasionally eat up to 3 oz of babyfood at one sitting.

Other than that, we're all doing pretty good. We got a "new" vehicle for Russ to drive to work. He got an '04 Ford Escape. It's a pretty nice car and with him driving to Charlotte every day for work, I feel better with him driving something newer. I finished a cake this weekend and I have another one to do in 2 weeks. This is the one I finished Saturday morning.

I am still working on sewing the squares together on the afghan. I know I've been so slack about it, but other things have come up that had to dealt with first. I'm about half done with sewing it together and doing the border. I'm going to work on it some this week in the evenings and maybe some during the day if I can get Evan to take a nap when he is supposed to.

Well, I hope that every one is doing well. Hope you all have a great week! :)

~Erin

music player

For everyone who's had issues with the music player, either playing over the video clips or because it starts automatically, I have removed the player. I tried to find a way to change the settings so that it wouldn't play automatically, but couldn't do that.

I may try to find another player that will have that type of customization. I like having the player, but realize that people do read this site at work where it could present a problem.

Thanks-

Erin

Growing up so fast!

Today is Aidan's first full day of preschool. I think he'll do just fine. Last week he went half days and his nurse went with him. The very first day he smiled when they did "circle time" and sang. He's painted by rolling a truck through paint and ridden in a wagon. I think he's going to really enjoy being around other children and being in a different environment.

Last Monday, I got a call from the neurologist about Aidan's MRI and SPECT scan. Aidan has two small hemorrhages in his brain. The larger one is 4-5mm, which is really small. We are trying to figure out what caused the bleeds. As far as we know, there is no family history of bleeding or clotting disorders, and I don't know of anyone who bruises easily in my family. Because Russell is adopted, we don't have a very complete family medical history, so it's hard to say. We know very little based on what his mom knows. Anyway... we went Wednesday and had some blood work done to hopefully find out what is causing the bleeding.

The good news is that aside from the bleeds, Aidan's MRI was stable. There wasn't any additional atrophy or shrinking, so that is good. We're okay with stable. I had hoped for something better- I don't know what, but better.

Aidan is doing so well eating by mouth. He LOVES applesauce, he did before the accident too. He's been eating more at each feeding too. We're up to about 2 ounces on a good day. There have been a couple of occasions that he's eaten more than that, too.

Yesterday was a year since he had the g-tube and trach surgery. We no longer have the trach, and we're working on the g-tube, although Aidan will have it for a while. It's just easier to have it, even if we don't have to use it on a regular basis. That is what we're working toward. The more food he can tolerate by mouth the less we have to use the tube and we can start mixing his meds into his food. The g-tube would just be there for occasions that he couldn't eat or take his meds by mouth.

Yesterday, I found an inflatable parrot for Aidan. It's bright and colorful and once I got it blown up, I gave it to his therapist and she got him to track the bird. It was great! He followed it very well. I rigged it up so that it looks like it's perched on the bar of his swing in his room. It's amazing the things you can find that can be therapy "toys".

Well, that's what is going on here. Sorry for the slack in updating. I'll try to post again soon.
Thank you everyone for the continued support and prayers!

~Erin