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.

A new look for the New Year

I decided to give the blog a face-lift yesterday. I thought it was time for a change, and I wanted to add some of the new features that Blogger has so that we can go back to using this as our main website with information and resources for families who have found themselves in this boat with us.

I'm still working on the pages and their content, but I hope that it's a start.

We had a good Christmas. Aidan has been fighting with some congestion, but it hasn't turned into anything bad yet. We just have to increase his breathing and vest treatments and try to get him to cough as much as possible.

Aidan got several new toys for Christmas including two interactive storybooks and story buddies that Hallmark has out. He got the Cooper, teddy bear and the Jingle, husky puppy. He seems to like the stories and he'll perk up when he hears the stuffed animal make sounds. 

It is so difficult to find gifts for Aidan, especially since toys and things that are made for children with special needs are so expensive. Another ND mom posted some of the things that she got for her son that I hadn't even considered, so we'll be looking at some of those for Aidan's birthday, which is just around the corner.

This year has flown by. Luckily, Aidan managed to stay relatively healthy. We had our huge blow-up with our primary care group and had to change pediatricians, which was the worst thing I think happened this year. We lost a doctor that we all really trusted and liked because of that situation, which is unfortunate, but it's water under the bridge now. We also found out that Aidan is showing early signs of scoliosis, which is very common in children like him, because he has no trunk control.

Aidan started Kindergarten at a new school this year. He is one of 2 or 3 kids in his class unlike last year when he was in an integrated classroom. He seems to like it, and his teachers love him and are very good with him. If we could just get him to stay awake most of the day.

This coming year, we're looking forward to trying Botox again in Aidan's legs. He has an appointment at the end of January with a new doctor for this, and we're hoping that it will help with the high tone in Aidan's lower legs. If that doesn't work, we will consider doing the heel cord surgery, where the tendons are cut so that we can get more range in his ankles.

We are also taking him to a pediatric orthopedist to address his scoliosis. That appointment is in a few weeks, so I will post another update then.

Aidan started a new formula about a month ago and his calories were increased in an effort to get him to gain a little weight. We've been waiting almost 2 years for the baclofen pump surgery because he doesn't weigh enough for our surgeon to feel comfortable to do the surgery. So far he's gained about 3 pounds, and only has about 5 more to go.

I'm hoping to start trying out a blenderized formula for him since I'd like to get him off the premade formula. There are so many better options out there, and I think he'd benefit from the change in diet.

Aidan just recently passed a swallow study and is able to "eat" thickened liquids by mouth. Prior to starting the ketogenic diet last year, he had been able to eat purees and baby food, but the 9 months of nothing having anything by mouth set him back in his ability to swallow and maintain his airway when having food in his mouth, so we had to start over.

We're hoping that he'll continue to progress to eating purees again, but will require additional Vital Stim therapy and continued practice with the liquids.

There will be a fundraiser in early March to help us raise money for some therapies, hopefully HBOT. Russell is working with a local group to arrange a comedy show and auction. We'll post more info about it as the details are worked out.

It's my goal to be better at posting updates. It's so easy to do a quick blip of an update on Facebook, that I've gotten slack about posting here. With that said, we'd like to wish everyone a Happy New Year and thank you all for your continued support and prayers.

~Erin

long overdue update

It's been a while since I posted, but not a whole lot has been going on. Aidan started Kindergarten at the end of August. He is in an EC class with 3 other children of various ages. I believe he's the only kindergartner. So far, I guess he enjoys it. He's been sleeping a lot during the day so it's hard to tell.

Over the past few months, we've noticed Aidan's heart rate dropping very low for brief periods of time during his sleep. Since it has been going on for some time now, we decided to take him to see a cardiologist this past Friday. This initial EKG that they did there in the office showed nothing out of the ordinary, but the doctor had a portable monitor placed on Aidan to be worn for 24 hours so that he might be able to see what is going on during the times that we're seeing his heart rate drop.

I'm hoping that it's nothing more than us needing to taper back the dosage of the Clonidine that he's on to control the storming symptoms. We'll know more after the data is reviewed.

Other than that, we took Aidan off of the Ketogenic diet because we didn't think it was having much impact on his seizures and he'd lost way too much weight. He now weighs 37 pounds and he's 42.5 inches long. We're trying to get him back up to 45 pounds so that his surgeon feels comfortable enough placing the baclofen pump that we've been waiting so long for.

In a few weeks, I am supposed to be going to Seattle some other mothers of near-drown children. If you recall, I went last year in November. It was such an amazing trip and I met some of the most wonderful and inspiring women ever. I am still trying to raise the money so that I can buy my plane ticket, but I'm hopeful that I'll be able to buy it in the next week or so with the amount of orders I've had come in for my crochet items.

I'm so sorry I've been so slack about posting new blog updates. Since we have a Facebook page for Aidan, we tend to update that more because it's just a quick blurb and so many people use it. We're so glad that so many people read this blog and have been touched or inspired by Aidan and our story.

Thank you for your continued prayers and support!
God Bless!

~Erin

ThirtyOne fundraiser

Thanks to Amy Bost, a friend and ThirtyOne sales representative, we are having a fundraiser for Aidan during the month of June (2-28th). A portion of each sale made when you shop from our direct link found here will go to Aidan. Depending on the amount of money raised, we'd like to get Aidan an iPad, switch toys, pay for hyperbaric treatments or build him a new bed and storage for his room.

We've been so blessed in the past by everyone's support and donations, that we hope everyone who is able will participate in this fundraiser. Every little bit helps and you get a great product in return.

If you don't know what ThirtyOne is, click on the link and browse through the catalog. There are some great organizational items, totes, purses, lunch bags, etc. All sales are done through the website, so it's easy and the items are sent to you. I don't believe that shipping is offered outside of the US at this time, though.

Thank you everyone for your support and your continued prayers for Aidan. We've been super busy, but I will post an update in the next day. It's a nice, sunny day here. I hope everyone has a great weekend!

~Erin

open letter removed

While I wholeheartedly agree with Russell's letter and feel that it adequately expresses our feelings in a non threatening way, I feel the need to remove the letter at this time. It will be addressed to the proper parties involved.

Never in a million years did I think that taking Aidan out of the hospital would cause the repercussions that we are experiencing now. We only have his best interest at heart, and I can guarantee that if there had been proper communication between all parties involved, things definitely would be different.

I want to apologize for the comments made primarily on Facebook by myself and Russell. They were made out of anger, frustration and hurt and should have never been put on such a public forum.

For the past 3 years we have depended on the staff at the hospital and our doctor's office. Without them, Aidan would not be here today. I don't want anyone to ever think that we are not grateful or appreciative of the care that he has received.

With that said, I also want to thank everyone who has supported us and knows that we are good parents, and that we are doing the best we can.

I hope and pray that this situation works out and that we can all move on and do what is best for Aidan.

~Erin

A non-profit for Aidan

I recently found out about an organization called the National Transplant Assistance Fund and discovered they have a division specifically for those who have experienced a catastrophic injury. According to their "About Us" page:

NTAF helps families address financial hardships arising from uninsured medical expenses related totransplantation (solid organ, bone marrow, stem cell or tissue) and catastrophic injury (spinal cord, traumatic brain).

Established in 1983 by medical professionals, NTAF is a 501(c)(3) nonprofit organization, with headquarters in Radnor, Pennsylvania, that provides expert fundraising guidance to patients, families and communities nationwide, while offering fiscal accountability of funds raised.

NTAF works to:

• Raise money and administer funds for medical expenses of patients and living donors not covered by insurance;
• Provide network identification, custom appeal letters and fundraising guidance;
• Offer direct financial assistance in the form of $500 and $1,000 challenge grants to eligible patients;
• Provide expertise, information and education about transplantation and spinal cord injury;
• Raise awareness about the critical need for solid organ, bone marrow, stem cell and tissue donation;
• Provide assurance of fiscal accountability in the collection, management and disbursement of funds raised.

Now in its 28th year, NTAF has helped more than 5,000 patients, families and communities nationwide raise more than $70 million to pay for out-of-pocket expenses related to transplantation and catastrophic injury.

Since this organization is a 501(c)3, all donations are tax deductible.

After calling them and getting things setup, I created an "appeal letter" that you can download at http://www.prayforaidan.com/AidanWright-NTAF.pdf. You are welcome to print it out and post at your office, school, or place of worship or you can distribute it via email. Below is the text of that letter:

Please help us meet Aidan’s needs!

Aidan Wright was your typical toddler: curious, inquisitive, playful, and fun. He loved to play with his toys and give hugs and kisses to everyone he met. He literally didn’t know a stranger. All that changed on February 16, 2008 when he suffered a traumatic brain injury due to a near-drowning accident he suffered at his second birthday party.

He got away from family who were at the house and was found face-down in his grandfather’s pond. Aidan’s dad realized that he was missing, only to discover him in the pond. Russell immediately ran down to the edge of the pond and jumped in to get him out. Aidan’s

Nana, who is a Registered Nurse, began CPR immediately while Russell called 911.

It only took three minutes for the first responders to arrive and take over. The paramedics worked on Aidan at the scene, intubated him and continued to try and get a pulse. They did not get a pulse on Aidan until about 40-45 minutes later after they arrived at the ER.

Once at the hospital, initial blood work showed Aidan's blood was extremely acidic. He also had severe hypothermia from his time in the 45° water. We were told to prepare for the worst, because the doctors on duty did not expect Aidan to survive.

Through the first hours, Aidan was warmed slowly until he became fevered from developing pneumonia. As a result, Aidan was kept in a medically induced coma for several days. Initial EEGs showed very slow brain activity and some seizures, while CT scans showed little swelling and initial MRIs showed very little damage to his brain.

After several more EEGs and MRIs, it was found that Aidan was showing more brain activity, but his brain had shrunk somewhat and the areas that initially looked hypoxic (oxygen-deprived) had infarcted (died) on the second MRI, causing a stroke in Aidan's midbrain (basal ganglia) area. This damage results in Aidan having multiple seizures and "sympathetic neuro-storms".

Aidan spent 40 days at the Pediatric ICU of Jeff Gordon Children’s Hospital at Carolinas Medical Center-Northeast in Concord, NC. He was then transferred to Levine Children’s Hospital in Charlotte, NC where he received physical, occupational and speech therapy for three weeks. Aidan was released from the hospital on April 17, 2008; two months and a day after his accident. He currently continues to receive nursing care at home, as well as inpatient and outpatient therapies. After three years, he has made a lot of progress, but there is still much that needs to be done. He is confined to a wheelchair, non-verbal, and must take feedings and medications via G-Tube.

To assist with the immense challenge of financing uninsured therapies and other injury-related expenses, a fundraising campaign has been established with the NTAF Catastrophic Injury Program. NTAF is a nonprofit organization that assists people needing organ/tissue transplants or having experienced catastrophic injuries. All contributions are administered by NTAF exclusively for injury-related expenses. Donations are tax-deductible to the full extent of the law.

To make a charitable contribution:

Make checks payable to: NTAF South-Atlantic Traumatic Brain Injury Fund

Note in memo section: In Honor of Aidan Wright

Send to: NTAF, 150 N. Radnor Chester Road, Suite F-120, Radnor, PA 19087

To make a credit card contribution, call NTAF at 800-642-8399 or visit www.NTAFund.org and enter Aidan Wright in the Find a Patient box on the NTAF homepage.

Family and friends are also planning a series of community events to benefit Aidan. We can use your time, energy and creativity in any and every way. Please call or email me with any questions, to volunteer your time or to request additional information.

Thank you for your interest in our son, as well as your continued support and prayers.

Russell and Erin Wright

prayforaidan@gmail.com

We have several things we hope to raise funds for:

• Stem Cell Therapy
• Hyperbaric Oxygen Therapy
• Supplements that we have given Aidan in the past (e.g., Ambrotose and IntraKID) 
• A new van with modifications to accommodate a wheelchair
• G Therapy

There may be other things, but that's a start. As always, we greatly appreciate everything everyone has done for us over the past three years. I pray someday we will have news that Aidan has made a huge step in progress for everyone to see.

~Russell

5 year old pics

We had Aidan's 5 year old pictures taken this past weekend by my friend Amanda (Amanda Tyler Photography). She did an awesome job, as always, so I wanted to share a few pictures that she's posted for us as a sneak peek!

Aidan isn't feeling well today. He's congested and having a hard time breathing and he's had a fever since early this afternoon. We've been giving him some extra breathing and VEST treatments and he's on oxygen so he's not having to work so hard to breathe. Russell or I will get up early in the morning and take him to the doctor so they can hopefully figure out what's going on and get him started on some medicine to make him feel better.

Wednesday will be the 3 year anniversary of the accident, but I will post another blog then. Please say a prayer that Aidan gets better soon. Also please add Caleb, Luke, Santana and Samuel to your prayers as well. Caleb isn't doing very well and was admitted the the PICU today with a collapsed lung and is on a vent. Luke and Samuel have had pneumonia and Santana has also been sick and is still recuperating from having surgery back around the holidays. There are links for all of their pages on the side of our blog. Please visit them if you have a chance. They are all very special little boys.

Thanks so much! As always, we appreciate your support, love and prayers!

a few pictures and an update

I took a couple of pictures of Aidan today after we got home from his follow-up appointment with the pulmonologist. I thought I'd share them with everyone. I'm so amazed at how big he has gotten. It's hard to believe that he's going to be 5 very soon. And with his birthday brings the anniversary of the accident. This is going to be the 3rd year.

Aidan's visit with the doctor went well. We discussed treating Aidan's asthma differently because the doctor doesn't feel that the nebulizer treatments we had been giving him were effective enough. Last year we had discussed using an inhaler, but it was decided we could hold off on that and see how things went this past year.

The good thing is that we've managed to keep Aidan out of the hospital with pneumonia, but I don't think the actual number of times he's had pneumonia has decreased. A lot of the times we catch it early enough that we're able to start him on antibiotics and get it cleared up quickly, and I'm very persistent about keeping him out of the hospital if we can do everything he needs at home. I hate being in the hospital. I hate feeling that anxiety that the worst is going to happen while we're there. I know that's irrational, but Aidan has everything he needs at home minus a doctor, IV pump and x-ray machine, so why not keep him home away from all the other sick people?

So anyway, after discussing why Aidan needs the inhaler, we decided to discontinue the neb treatments except for when he is sick or needs "rescue" treatments and start him on an Advair inhaler. Because Aidan isn't able to breathe in properly to use the inhaler, we're using what they call a "spacer." It's a little chamber that has a mask on one end and you puff the inhaler into the chamber and the child then breathes that in. Aidan's mask has a duck face on it.

I'm also hoping to find a chiropractor for Aidan to check his spine. I'm afraid he is showing signs of scoliosis and I want to find out for sure and start taking steps to prevent if from getting worse. There are so many things that are connected with a brain injury, you just can't fathom them all. When you can't use your body it just starts to fail and it's a constant fight to keep our children alive, with whatever amount of mobility and use of their body we can get.

I used to think it was like having an infant all over again, but it's not. There are some parts that remind me of taking care of an infant such as understanding their cries and just reading their cues and the lack of ability, but a normal infant is changing every day. They gain a little more strength every day and do new things right before your eyes. It's not like that with Aidan. We're stuck at the completely helpless stage. I compared it to being completely stuck in the mud the other day. And that's what it feel like most of the time. If Aidan makes any progress it seems minute.

I guess that is because I want him to improve by leaps and bounds. I dream of waking up one morning and going in his room to find him sitting up on his own, holding up his head and saying "hi, Mom." or playing with some toy or reading a book. Those are the things he did before the accident and I wish I could see him do all of that again.

So here are the pictures I took today- He looks so "normal" in them. If you're wondering what he is wearing on his feet in the one picture, those are his new AFO's. We call them his ski boots, because that's what they look like.

so long 2010, hello 2011

This year has flown by. It's hard to believe that my babies are growing so quickly. Aidan turned 4 in February, we welcomed his baby sister in March, and Evan turned 3 in June. It's been a year of minimal illnesses for Aidan and we've managed to keep him out of the hospital for most of the year, although we did have to have him admitted overnight the night before Christmas Eve with a stomach bug and pneumonia.

This year we had several fundraisers for Aidan, thanks to some generous donations from some lovely women (Sharon Z. and Betsy R.). I'm not sure what 2011 will hold for us or Aidan, but I hope to have some more fundraisers so that we can finally realize our goal of trying stem cell therapy for Aidan.

This year also brought the joy and excitement of seeing Aidan try to lift his head on his own and the start of a ketogenic diet and baclofen pump trial. The diet seems to have helped some of Aidan's seizures but not all of them and we're waiting to hear from the doctor about when we can proceed with the baclofen pump placement.

In the coming year, Aidan will be turning 5. This year will be the 3rd anniversary of the accident and will also be Aidan's last year of preschool. Just thinking about the next few months are overwhelming for me.

I hope that I can be better about blogging and keeping everyone up-to-date on Aidan.

Wishing you all a safe and happy New Year!

~Erin

A Christmas card from the Wrights

I thought I'd share our Christmas card with everyone. I hope that everyone has a blessed holiday and a happy New Year. We appreciate your love and support more than we can ever express. Your prayers are also appreciated and we hope that you will continue to pray for Aidan and our family. Thanks and Happy Holidays!

~Erin

something to be Thankful for

I can't believe it's been so long since I updated this, but things have been going okay. Last month, Aidan was supposed to do the baclofen pump trial, but on the day I took him he was as limp as a wet noodle. There was no way for the physical therapists to gauge his tone since he was so loose so we canceled the procedure for that day. Right around Halloween, Aidan got a cold and had to be put on antibiotics so that put the trial off again. I just got a call today and he is scheduled to go in Monday morning for the trial. I pray that he's his usual self and that we can see if the baclofen pump is going to help his tone.

Aside from that, everything has been going well. Aidan is enjoying school and has even begun to try to hold his head up. I posted a new video on YouTube of him doing this. So many of you follow us on Facebook, that I often forget to post blog entries, too.

Earlier this month I had the opportunity to go on a retreat with other moms of near-drown children. We met in Seattle, WA and spent the weekend at one of the mom's vacation home at Suncadia Resort near Cle Elum, WA. It was an amazing experience and I am so grateful to the wonderful friend who paid for my plane ticket there and another friend who helped with a little spending money. The whole weekend was completely paid for by donations from some very generous and wonderful friends of Sue (Luke's mom). Sue's daughter, Amy, and friend, Yoli, also stayed with us and did the cooking and cleaning up. (Thank you so much, ladies! It was a pleasure getting to know you both!)

We spent a day in Seattle going to Ivar's for lunch, Pike Place market, the Space Needle, and then we rode the monorail to downtown and ate dinner at the Cheesecake Factory. It was a long, but extremely enjoyable day. Sunday, we walked to the lodge and then some of us rode to the resort's winery and had lunch. It was such a relaxing afternoon, and that evening we spent some time sharing more about our kids and played bunco. There were tons more laughs than tears, and I left there relaxed and missing the 11 other moms before I even walked out the door. I felt like I knew every single one of them my entire life. We are going to try to make this a yearly trip, and I can't wait for next year.

Every year I try to list what I'm thankful for. I'm thankful for these things all year round but seeing that tomorrow is Thanksgiving, it just seems appropriate to share. I am thankful for Russell, Aidan, Evan, and Graceyn (our newest addition), for the rest of our family and friends. I'm thankful for everything that I have, for my business that is slowly taking off. I'm thankful that I healed from having 2 surgeries this year and that we've been able to keep Aidan out of the hospital with an illness. I'm thankful for having the opportunity to meet other moms who know exactly how I feel, for their friendship and for everyone who has supported and prayed with and for us.

I could go on and on, but I think you get it. Despite how bad things can be at times, I have so much to be thankful for. Thank you everyone for your love, support and prayers. Please continue to pray for Aidan as we are going to be doing this baclofen trial this coming Monday. I hope it's the answer to his tone and stiffness. Please also pray that he gets over this sinus congestion/cold and that it doesn't get any worse. It is so hard keeping him well this time of year.

I hope everyone has a Blessed and Happy Thanksgiving!

~Erin

Bring on Fall!

It has been so crazy around here the past few weeks. Aidan was in the hospital from Aug 30- Sept 2nd for his diet change. We are trying a ketogenic diet to see if it will help with his seizures. So far, I haven't noticed much of a change in his seizures, but I have noticed that he is more alert, he's not as sleepy during the day, and he's not having the tummy troubles with gas. It has been so nice for him to not be in pain after every feeding because of gas. As an added benefit, he's lost a little weight and he's been smiling a lot more. If this diet works and decreases the number of seizures Aidan has per day we hope to be able to reduce the number of medications he is on.

We're still hoping he gets a baclofen pump. His doctors have approved it, but we're waiting to hear from someone with the manufacturer (I think that's who) first. I have to follow up on that.

Aidan started school on the 6th. He loves going to school and being with the other kids. He loves music and smiles a lot. This week we've been dealing with allergies, so he missed school on Monday because he wasn't feeling well. Evan is also going to the same pre-school and the boys ride the bus together in the morning.

Other than that, the only news we have is that we're moving. My mom got married last month and we are going to be renting her house. We're looking forward to have the extra room for everyone to spread out some. Being in the apartment is like living in a sardine can. We're packed in here tight with no where to put all of the "stuff."

I hope that everyone is doing well. We appreciate all of your support and prayers and hope that you continue to pray for Aidan.

~Erin

An offer to help from Belle Salisbury

Another wonderful person has offered to help by offering her services for a donation!

Belle Salisbury is a gifted internationally recognized Psychic Medium who is known for her natural ability since childhood to bring through messages from those in the spirit world. She has spent many years in the study of spirituality and the psychic realm earning a Doctorate in Metaphysics. She became an Ordained Spiritualist Minister in 2004 and hosts Sunday Church Services at The Willow.

Belle has appeared on Television, Radio, in Newspaper publications and has taught in Lily Dale, NY. Several of Belle’s home investigations have been included in the books “Still More Haunted Northern New York” and “Weird Northern New York”  by Cheri Revai. Belle is often called upon to offer assistance in locating missing persons and murder investigations. Belle frequently participates with fund raisers helping her community and local charities where 100% of the proceeds are donated.

She has offered to give readings to anyone who donates to Aidan. If you donate $50, you will receive a 15-minute reading. $70 gets you a half-hour reading, while $100 gets you a one hour reading.

For those who wonder why I would accept such an offer, Belle also practices as a Spiritualist minister. She offers prayer before each reading and believes her ability is God-given.

I know this may not be for everyone, but the offer is out there if you are interested

~Russell

July Raffle!

This month, thanks to another very gracious donation, we are having another raffle! Betsy Ross Linens is donating three different prize sets or her incredible fabric work.

Here is what Betsy Ross Linens is donating:

GRAND PRIZE

The Grand Prize has a total value of $263.00 and consists of:

• 1 Fleece & Patchwork Flannel Baby Throw Blanket ~ Value $75.00
• 1 Fleece & White Panne Throw Blanket ~ Value $45.00
• 1 One-of-a-kind Market Bag with liner and metal feet ~ Value $54.00
• 1 One-of-a-kind Market Bag Euro with liner and metal feet ~ Value $54.00
• 1 Standard Hot/Cold Pack ~ Value $27.00
• 1 Mini Hot/Cold Pack ~ Value $8.00

Below are some close-ups in the items in this package:

GRAND PRIZE ITEMS
BLANKETS

The blanket on the left is a polar fleece and white panne throw. It measures approximately 45 inches x 59 inches. The panne has a nice sheen to it. It's very soft and machine washable. (You can choose another color only if it's in stock and ready to ship.) The blanket on the right is a polar fleece and flannel patchwork baby throw. It measures approximately 45 inches by 59 inches. This blanket is also machine washable.

MARKET BAG

This is a one-of-a-kind Market Bag. This bag is a versatile, all-around shopping bag designed around a paper grocery sack. It stands up like a paper sack and folds up just like it, too. It's made of heavy canvas hand bonded to a 100% cotton print. It measures 14 inches tall, 12 inches wide and 7 inches deep and comes standard with a magnetic snap closure. This bag has the added bonus of a muslin liner, metal feet and matching fabric straps.

MARKET BAG EURO

This is the new addition to the Market Bag Line, the Market Bag Euro. The bag pictured is a one-of-a-kind Market Bag Euro. It is constructed exactly like the regular Market Bag except its in a different shape and slightly larger. It measures approximately 15 1/2 inches wide, 12 inches tall and 6 inches deep and comes standard with a muslin liner and magnetic snap closure. This bag has the added bonus of metal feet and matching fabric straps.

HOT/COLD PACKS

Betsy: I've been told by satisfied customers that my Hot/Cold Packs are best packs they've found anywhere.

They can be heated in the microwave or put in the freezer for heat or cold. They are made from 100% cotton prints with a special blend of lavender flowers, peppermint leaves, rice and flax seed. The standard pack measures 8 inches wide by 24 inches long. The Mini Pack measures 4 inches wide by 12 inches long.

SECOND PRIZE

Second Prize is your choice of either a Market Bag or Market Bag Euro with metal feet, liner and matching fabric straps in the cotton fabric of your choice. Her cotton page has the available fabrics will will be able to choose from.

Value: $54.00

THIRD PRIZE

Third Prize is a Standard Hot/Cold Pack and Mini Hot/Cold Pack in the cotton fabric of your choice. Her cotton page has the available fabrics will will be able to choose from.

Value: $35.00

For those of you who are not familiar with Betsy's work, you can read what people are saying about her Hot/Cold Packs, Market Bag Line and throw blankets here.

You will be able to purchase as many chances to win as you want, but only one prize per person. A single entry will cost $5.00, three tickets for $10.00, five tickets for $15, or seven tickets for $20.00. You can buy your chances by going to the PrayForAidan.com Store. The Raffle starts at 12 am EST on July 1st and ends at 12 am PST on July 31st. The winners will be chosen a few days later and notified by E-Mail.

Again, our sincere thanks to Betsy for doing this. Good Luck!!!!

reflections

In the past few weeks I have been continually reminded that life really isn't fair. I've read about several children who have lost their fight with cancer, more children who have died because of other accidents including drowning, and other children, like Aidan who are permanently disabled because of such accidents.

I can't begin to know why such terrible things happen to the most beautiful, innocent, amazing children. They shouldn't have to hurt and suffer. Their bodies shouldn't deteriorate before they've even had a chance to live. I know that God has a purpose for all of us, but some days I just want to ask him "WHY?" I want it all laid out for me.

Just this week, I joined a group on Facebook for a little girl here in Charlotte who was battling stage 4 Rhabdomyosarcoma. This morning, she passed away. She was only 8 years old, and she had such a willingness and joy to live. It broke my heart to read her mother's journal entries as she shared with everyone her little girl's final few hours. I know the hurt of watching your baby suffer, of knowing there is nothing you can do for them other than hold them and love them. I came close to knowing the pain and loss that this mother is feeling now, and I am thankful for the second chance I got. My heart goes out to Potvin Family. I pray for them to continue to stay strong and faithful and spread that love and faith they have as they go through these next few days, weeks and months. (http://www.liftupellie.com/)

It's been a long week so far, as you can probably tell... Aidan had an appointment with his neurologist on Monday morning. I wasn't able to go to it because someone needed to stay home with Evan and Graceyn, so Russell took him. They discussed how Aidan's been doing and went over some of his meds, and then discussed trying a ketogenic diet. The doctor was surprised we hadn't looked into it sooner and thinks that it will help Aidan. Considering that he "specializes" in this kind of diet to treat seizures and other conditions, I would have thought he would have suggested it sooner if it's something that would help with Aidan's seizures. So we have an appointment on July 1st with a nutritionist to discuss it and see what we need to do to get started. After that an appointment will be set for him to be admitted to the hospital for a few days while they monitor him on the diet and educate us on how to follow the diet. It's a very precise diet, and has to be monitored closely. The benefit of the diet is that we could possibly decrease his seizure activity and meds and possibly eliminate the meds altogether.

Monday evening, I noticed that Aidan had some drainage out of his right ear. I went to clean it out and he flinched every time I touched his ear and then began crying when I put a little more pressure on it to clean it with a damp cloth. I called his doctor and left a message on her cell phone. Luckily she got it (she was at the beach) and gave me a call back. I had to take him to the office Tuesday morning for the nurse practitioner to look at his ear. Anyway, Aidan has a pretty nasty ear infection, most likely from getting pool water in his ear when we took him and the kids swimming last week. I didn't think that he had gotten any water in his ear, but it looks like I was wrong. So now we have some ear drops and hopefully it will clear up soon.

On a good note, his heels are almost completely healed. I'm so grateful for that because they looked terrible. We are still waiting to hear about doing the baclofen pump, though. The surgeon is concerned that the pump might be too big for Aidan's abdomen right now.

Today was Aidan's modified barium swallow study. He did really well and is now able to eat nectar thickened liquids. This is an improvement from the last study. We're hoping to start vital stim again soon.

So for now, that is all that is going on with our little man, Aidan. He is doing well. I just hope and pray that we are able to find a way to get him somewhere for stem cell therapy. I still feel like that is our best hope for significant improvement in his condition. There are so many things that we want to do for him and for our family. Therapies are so expensive and most if not all that we want to do are not covered by insurance, we need a home that will accommodate Aidan's and our entire family's needs. We have seriously out-grown this apartment. Our van, which is our primary mode of transportation for Aidan is in dire need of work. I'm just praying that it doesn't crater on us any time soon, because we just don't have the money to fix it if it does.

Evan's 3rd birthday was yesterday, and we are having a small party on Saturday with family a few friends. I'll try to post some pictures on Sunday.

Thank you everyone for your continued thoughts and prayers for Aidan and for our family. We're so lucky to have so many people who care about us all.

~Erin

school's out for summer!

Aidan's last day of preschool for this year was June 4th. They had a little party at school for the kids. Two of the little boys from Aidan's class graduated to kindergarten. Like last year, Aidan's teacher, Ms. Melanie, gave us a CD with pictures that they had taken during the school year, so I wanted to share those with you all.




















The EC class that Aidan is in is going to be moving to a different school, but he will have the same teacher next year since he still has another year of preschool. Evan will also be starting preschool with Aidan in the fall, but he will be in a different classroom.

We met this last week with the surgeon who did Aidan's g-tube and trach to discuss doing a baclofen pump trial. The surgeon was concerned that there isn't enough room in Aidan's abdomen right now for the pump since it is pretty big. He is going to talk with our neurologist and our physiatrist to get their input. I am hoping that we will be able to do the trial and see if there is any improvement in Aidan's tone. I don't know if it will help with the posturing that he is doing a lot of these days.

Next week is our visit with the neurologist. We're going to be going over the results of Aidan's most recent MRI and EEG, and I plan to talk to him about putting Aidan on a ketogenic diet to see if that will help control his seizures. Dr. C uses this diet for a lot of his patients and he has done a lot of research on it, so I trust him.

Well, that is all that is going on here. No summer school or therapies other than speech and Vital Stim, which we hope to start soon, once we get a barium swallow study done.

Please continue to keep Aidan in your prayers. I still have hope that there is a miracle out there and Aidan continue to improve and will one day be healed.

~Erin