Tshirt fundraiser!

A while back, on Facebook, I posted a link for the stroller base that fits Aidan's Special Tomato MPS chair. You can see the stroller here. Like all things "special needs" it's extremely expensive. Russell and I thought about it for a while and decided to try a t-shirt fundraiser to try to come up with the funds to get this for Aidan since our insurance won't cover it.

Aside from our goal of raising funds, we want to raise people's awareness about the dangers of water, drownings and near-drownings. I found this wave graphic some time back and knew that I wanted to use it for this purpose. I hope that you all will help us by buying a shirt and spreading the word. We started with a goal of 100 shirts and the fund ends on November 29th. This will be a great start to purchasing the new stroller.

Above is the shirt design. You can purchase your shirt here: http://www.tfund.com/prayforaidan

Thanks so much for your support!

Aidan's WISH was granted!

First and foremost, I apologize for the lack of updates. I just have not felt like writing a long blog. I hope that you all follow Aidan's Facebook page and get more regular updates there.

Back at the beginning of the year we started the application process for Make-A-Wish. It's a lot of paperwork and getting doctors to sign off and then you have to wait for a committee to review the medical info to determine that your child meets their criteria. We waited patiently for months and then we got a call saying that the application was approved and we met with our Wish granters so we could formally make Aidan's Wish.

Well, since Aidan can't really tell us what he would like to do, we made the choice to wish for a Disney/Universal/Sea World trip. We thought that it would be something that the kids would love and they could make some great memories of doing something fun with Aidan. We also thought that it would be stimulating for Aidan.

Early this summer we got our official letter from Make-A-Wish with our selected dates. We decided to go the week after Thanksgiving because of Russell's vacation schedule, but it turns out that the week we've chosen is supposed to be the best week to go. So we get to see the parks decorated for Christmas which I'm really excited about.

The little kids are beyond excited and we tell Aidan about the trip and tell him all of the things that he's going to get to do. I've gotten a few smiles out of him when I talk to him about it. :)



So, aside from that bit of info, things have been okay. Aidan is doing as well as can be expected. He's relatively healthy. We've had a horrible summer with allergies and asthma due to all of the rain we've had, but he's been a trooper. We've added a new seizure med that seems to be helping, but it has some side effects that I'm not so sure of. He's had some apnea spells at night, so we did a sleep study last weekend to see what was going on. I haven't gotten the results of that back yet, but he's done well this week.

School started back the last week of August and Aidan has a new teacher this year. We were sad to see Mrs. Q, his teacher last year, leave. She did some great things with him and he was making progress using an iPad with communication apps and switches. He has also been much more responsive and smiles a lot more than he was just a year ago.

He always amazes me and every day I'm reminded just how much I love him. Here are a few pictures. He's grown so much! Thank you all for your support and prayers. <3 p="">

 April 27, 2013 at Uncle Bryan and Aunt Gera's wedding in Oklahoma

 October 2012 

 At school with his physical therapist and her therapy dog

 snoozing peacefully- he's our little angel!

Russ and Aidan- October 2012

family pictures at Historic Gold Hill

Update and Indiegogo Fundraiser

Hi everyone! I apologize for not updating the blog since Aidan's heel cord lengthening surgery in April. It's been a busy few months. The surgery went well and Aidan's feet are now back to a neutral angle instead of being completely pointed down, making any ballerina sick with envy. We had a few setbacks due to some cramping and pain from wearing hard casts for 6 weeks, and are now dealing with some issues with his left hip.

Both hips are completely dislocated, but his left femur has moved up and is now causing pain and decreased mobility in his hip. We want to avoid hip surgery and his doctor says that he is still very young for the surgery considering he has more growing to do.

We had an appointment with his neurologist today and we discussed the possibility of doing a VNS (Vagus nerve stimulator) to help control his seizures since he is currently maxed out on the medication he takes for his seizures. It is something that Russell and I will have to discuss and research, but from what I know about it, I think it's a good option. http://www.epilepsy.com/EPILEPSY/vns

Aside from that, I'd like to share our newest fundraising event. We decided to try an extended fundraising event hosted by Indiegogo. As some of you know, equipment, adaptive technology and therapies are extremely expensive and most insurance companies will not pay for these items. That does not make these things any less beneficial for children like Aidan, quite the contrary, these items can make daily life and care much easier and can make it possible to teach Aidan a way to communicate with us, aside from crying.

There are therapies that we would love to be able to do with Aidan that could greatly improve his progress, such as hyperbaric oxygen therapy and stem cell therapy. From our previous experience with HBOT, we know it was beneficial. It was during that time that we saw Aidan smile and laugh for the first time after the surgery. His tone improved and he was a totally different child than he is today.

Stem cell therapy is something that after a lot of research and speaking with other parents who have children like Aidan, we've decided we want to try. While we know that some aspects of stem cells are controversial, I assure you, the stem cells that are used in the therapy we are considering are the non controversial, umbilical cells. These are cells that are donated for use.

With all that being said, we are trying to raise as much money as possible so that we can provide these things for Aidan. Whether we reach our goal or not, all of the funds can and will be used for Aidan's care. Any amount will help, $5, $10 or larger, and if you aren't able to contribute, please share this with your family and friends and ask them to do the same. The more exposure we can get, the better our chances of being able to reach our goal.

We thank you all for your continued support and prayers for our family on this very long and difficult road. Aidan is definitely a very blessed and very loved little boy. 

My name is Erin and I'm a horrible blogger

I think the title says it all. I have neglected updating this blog for one reason or another. I'm on Facebook much more often that it's just easier to update Aidan's page there since there are over 1000 people like the page.

I meant to post something about the 4th anniversary of the accident and Aidan's birthday, but they both passed uneventfully. It's getting easier to deal with the loss that we feel. We have our days but I have too many things and people that demand my attention to wallow in sadness all the time.

I just recently came to the conclusion that what I miss most about Aidan is the interaction that we used to have. Another conclusion that I came to with the help of another ND mom's blog is that I just need to accept that this is how Aidan is. I need to stop wanting to FIX him because if the doctors and medicine can't fix his brain or erase the damage from the accident, then I surely can't. All I can do is be here to love him and care for him as long as I'm able to.

So with that revelation, we've just been living life. Doing the day to day stuff. We're trying to get approval from CAP-C (medicaid waiver program) to have the shower in our bathroom modified to better accommodate a shower chair, and to also replace the wheelchair ramp that we have to get Aidan in and out of the house. I just signed the last piece of paperwork for that today, so I'm hoping that we'll get an approval letter soon.

We've had several pieces of equipment approved but it takes so long sometimes to get the stuff. It may be another 3-6 months before we see any of it.

This coming Monday, Aidan is having surgery to release his heel cords. The tone in his legs is so high and it's caused severe foot drop. Imagine constantly pointing your toes... even when you can relax those muscles, they never relax enough that you can bring your foot up to flex it. That's how Aidan's feet are all the time. It's gotten more and more difficult to stretch him so that we can put his AFO braces on and therefore he can't stand in his stander.

So please keep Aidan in your prayers while he undergoes this surgery. It's a quick procedure, but he'll still be put to sleep so there's always concern for us there. While he's asleep they will put casts on his feet and lower legs. I'm not sure how long the casts will have to stay on, but I'm sure he's not going to be happy about them.

In June we have an appointment with a neurosurgeon to discuss the baclofen pump yet again. We had been seeing another surgeon, but he moved to another city, and since it's been almost 2 years since we did the baclofen trial we'll have to start over anyway. I'm hoping that Aidan will be able to have the surgery this summer.

So that's what is going on in our world. I'll try to remember to post after Aidan's surgery on Monday.
As always, thank you for the prayers and support.

~Erin

updates and ramblings

Mr. Aidan had an appointment with a new neurologist to discuss the possibility of doing botox in Aidan's legs to help with his tone. After the doctor assessed Aidan's tone, she decided that the botox probably wasn't going to help very much and suggested surgery to cut the heel cords, and to see if we can get the baclofen pump surgery soon as well.

In addition to the visit today, Aidan had an appointment with a pediatric orthopedist last week. We've known that Aidan was starting to show some signs of scoliosis, but we weren't sure how bad it was. He had some x-rays done of his spine and his hips. The good news is that his spine isn't as bad as we thought it might be so we're just going to keep an eye on it and follow up again in a year unless we notice any changes before then.
The bad news is that Aidan's hips are completely dislocated. I was so upset looking at the x-rays. I expected some slippage, but I really wasn't expecting what I saw.

The dislocation is not something that just happened. It pretty much happened from the beginning. The constant high tone and posturing during the storming episodes and the continued tone gradually over time caused it. The doctor does not recommend surgery to repair this since Aidan is not ambulatory. Surgery would be painful and would take a very long time to heal as it requires breaking bones and resetting them. As long as Aidan isn't in any pain due to his hips, I'm not willing to cause him any undue stress or pain.

I would love to believe that Aidan could be completely healed by a miracle, but the realistic part of me knows that he'll never walk. I'd like to think that with stem cell therapy he could gain some ability to sit up with minimal support and maybe be able to communicate using a gaze communication device, but we can't afford stem cell therapy. My hopes for him are to be able to live as comfortable a life as he can and try to push him to make what progress he can make. I know that there is a smart little boy in there just waiting for us to figure out a way to help him.

The 4 year anniversary of the accident is less than a month away. I'm not dreading it like I have. It's just a day. The memories are always there. The grief is always there and it sneaks up on you when you least expect it, and it feels like an elephant sitting on your chest. It just hurts so bad and there is nothing you can do to fix it.

Imagine your perfectly normal child with all of his future wide open before him, you have dreams of him going to school, learning to drive, graduating, going to college, getting married, etc. and then imagine in a matter of moments all of that is taken away.  You're left with a child that looks like your perfect little baby, but they're not really the same. The Aidan that we knew is not the same little boy we have today. There are little glimmers of that little boy, of his spirit, but he doesn't even smile the same way he used to.

We have been so blessed through this journey. We've had people who love us and support us praying for us this whole time, and we are so grateful for every single one of you. I hope that you all continue to keep Aidan in your hearts and that you share our story with other families, especially those with small children. I pray that more parents and caregivers are aware of the dangers of water and take more precautions to keep their children safe.