some self-pity, an update and thanks

It's 2:15am here and I should be in bed by now, but I just had some thoughts I wanted to get off my chest. I just went in to check on Aidan and give him a good-night kiss. It's absolutely amazing to me that he can sleep so peacefully and look so "normal" when he is asleep.

I stroked his cheek and he stirred a little. He always does this when I touch him when he's asleep, and every it surprises me at how "normal" he acts. He's able to move his head, arms and legs. He stretches just like a normal little kid, but when he is awake he is not able to move as much.

I just don't understand. It is heart-wrenching to see him like this. He looks exactly like a normal 3 year old, sleeping in his bed. The only problem is that when he wakes up, he isn't a normal 3 year old. I just miss him so much! I want to hear him laughing and playing and fighting with Evan. I want to have both of them driving me absolutely batty being normal little boys.

Those of you who have intact children are so lucky. Hold on to your kids and love them. Cherish every moment you have with them, no matter how crazy they make you at times. I'd give anything, I'd endure anything to have my Aidan back.

Sorry to start out with my depressing pity-party, but I couldn't keep it in any more. So now for the results of the EEG. According to Dr. C, the test was unremarkable. I take this to mean that he isn't showing any additional seizure activity or that it is unchanged from the previous test. That leaves us with the question of what is causing the twitching or jerking that we take to be seizures? Is it just Aidan's brain recovering and the parts of his brain that control his movement are "waking up?" Lord, I hope and pray it is.

I know that I am a very impatient person. I want Aidan healed NOW, but I also know that God does His work in His own time and not ours. Since the accident, Aidan has overcome many obstacles. He has made amazing improvements and has grown so much! He is a miracle in progress.

I am so thankful to each and every one of you who have prayed for our family, who have donated any amount to help Aidan, who have passed along our story to others and who have supported us this far. I hope that we are able to touch even more lives as we continue on this path with Aidan. I pray that Aidan's life can become a testament and that one day he will be able to tell others his story.

I hope that everyone has a wonderful Memorial Day, and I hope that you take the time to remember what this day is for. Remember those who have served our country, who have fought for our freedom and those who have died doing so. I have many members of my family who have served in the military, and I want them to know that I appreciate them and I am proud of them for what they do and have done.

God Bless!
~Erin

Hematology update

Aidan had a follow up appointment this morning with the hematologist. Before his appointment though, we went in for some blood to be drawn in the lab. This lab work is to check the level of the seizure medicine in his blood. They also drew blood to test for allergies.

According to the doctor, everything they've tested him for has come back normal so it doesn't look like the cause of his brain bleed is due to a problem with his blood. It's looking like it is more neurological, and my guess is that it is associated to the seizures.

It's all one big huge interconnected circle. It's frustrating. I just want his seizures under control. They were happening less frequently until last week when the fever spiked and he was put in the hospital. I'm sure it's related somehow.

In the morning, Aidan is scheduled for an EEG. It's supposed to be a sleep-deprived study, but I'd love to know how I'm supposed to keep him awake until midnight and then let him sleep for 3 hours and then wake him up and keep him awake until 8am. I'd love to see any of them keep him up, because I've tried it. Aidan can sleep through anything, and quite frankly, I don't care to only get 3 hours of sleep myself. We know he's having seizures already, so I'm not really sure what this EEG will show us. I guess we'll find out when we talk to the doctor.

As far as everything else goes, Aidan seems to be doing okay. His lungs are clear and despite the seizure activity, he's been alert and is smiling a lot more. Yesterday I was taking his picture and every time the flash warning light came on, he would smile for the camera.

For those of you that have purchased entries for this months raffle, I will be returning those funds to you. We have had very few entries, and it isn't even worth the time to do the raffle. Aidan's therapies will just have to be put on hold for a while. While this isn't anyone's problem but our own, we're struggling to keep a roof over our heads and our van needs work. The additional therapies and supplements that Aidan takes are expensive. I don't like asking for donations and I'm not about to beg anyone or ask anyone to feel sorry for us. We thought that by doing a raffle, at least you have a chance to win something. I don't know... maybe I'm wrong.

I greatly appreciate the support that we have had and the continuous prayers for Aidan. Please don't take my last statement as my being ungrateful, because I'm not. Personally, I'm just having a very difficult time with everything.

~Erin

A little "plug" for Erin's new business venture!

I have wanted to start a business creating and selling photocards, announcements, and invitations for some time now. I just recently decided that I really didn't have much to lose if I made some new items and put them out there. I just got the blog/website up yesterday and although it is still very much a work in progress, I'd love some feedback about it.

It's called "From the Heart" (announcements, cards and invitations.) I will be working on the page some more so that there are shopping carts to make placing an order easier. But for now, I'm just working on some new designs.

Check it out and let me know what you think, and please pass it along if you know someone who is expecting, getting married, having a party, or would just like holiday cards done.

Thanks!
~Erin

Special Request: Need for calling card

If you have looked in our links section, I have mentioned a therapy based out of India called G Therapy. This is a homeopathic therapy that consists of a pill that is given sublingually (under the tongue). The reason I really want to get Aidan in on this therapy is due to the video below. It is almost 6 minutes long, but I ask you watch every second and see the amazing transformation that occurs:

I have communicated via email with the doctor who created this therapy and he wishes to speak with me further; however, this requires an international phone call to India. Unfortunately, Skype does not work for him due to poor audio quality and I do not have international calling on my cell plan (nor do I plan to get it). If anyone out there can help by providing me a pre-paid calling card that can be used for international calling to India, I'd greatly appreciate it. I wish I could tell you how much or how many minutes I would need, but I really have no clue; I would assume between 30 and 60 minutes of talk time.

Again, I greatly appreciate any help you can provide so I can contact this doctor!

-- Russell

We're home plus a few other things

Sorry for not posting again yesterday, but we had to get ready to go to a birthday party soon after getting home.

We got home about 1:30 in the afternoon. Aidan's white blood cell count had dropped between 16 and 16.5 (i.e., 16,000-16,500) on his last blood sample. He is on an antibiotic for 3 more days and will have a couple of follow-ups this week with at least our family doctor and maybe the neurologist (more on that later).

Speaking of the party, it went pretty well. Erin once again made a great cake along with some cupcakes. Her step-dad really appreciated the gesture. We really appreciated the 10 gallons of ice cream he made (yes, ten gallons).

Erin is in the process of creating her home business. She has made up her blog (http://from-the-heart-stationary.blogspot.com) and should be posting some things to it soon. Her business will be creating cards (photo cards for holidays, thank you cards, etc.), invitations, and announcements (birth, wedding, engagement, etc.). Once business starts flowing, we'll look into setting up a full-blown online store front, etc.

While at the party yesterday, I had heard that some people wanted to help us with raffles, but were reluctant to do so because we said we didn't want to do them anymore. I would like to take the time to clarify our position.

We personally are not likely to do anymore raffles after this month; however, if you have talked to us or a member of our family about doing a raffle as a benefit, please feel free to do so. We'll be happy to promote it through the blog if you tell us about it and give us ways you can be contacted about purchasing chances.

The same goes with benefit events: let us know and we will mention it on here; we'll also try to make arrangements to make an appearance at the event so you and the people at your benefit will get a chance to meet us live and in person. Also contact us if a non-profit is needed to make a benefit happen for you.

As always, we greatly appreciate all the prayers and support you have given us. I ask that you concentrate a lot of prayer this week on something that started this weekend.

We have noticed that Aidan is moving his arms and legs a lot as well as smiling and laughing more. I know this would normally be cause for celebration and rejoice; however, it started happening after we got home from the hospital. We are afraid it may be something more significant like increased and stronger seizure activity. We contacted the on-call neurologist this evening (Dr. F, not Dr. C) and she recommended we increase his anti-seizure medication again starting this evening. Erin is calling Dr. C in the morning to see about him seeing Aidan ASAP.

Have a good evening! I'll be posting something new in a moment for a personal request I have.

--Russell

Just spoke with the nurse

The nurse just came in to give Aidan his 9AM meds and feeding. She said his white blood cell count was down to 16 or 16.5 (thousand). She didn't say with much certainty, but she believes we'll be going home today. I'll wait for the doctor to get here and then I'll post another update.

Thanks again for the continued prayers!

-- Russell

Hospital update

Hello everyone. Right now, Aidan and I are still at the hospital, but we hope that will change soon.

I spoke to the nurse last night to find out the course of action. She told my they were going to draw blood this morning and check his white blood cell count again. Once they know that, one of the following will happen:

- Do nothing and go home
- Give antibiotics and go home
- Give antibiotics and stay another night

Right now I'm waiting for a nurse to come in here so I can find out more. Will post an update as soon as that happens. For now, keep up the prayers!

-- Russell

Aidan missed the PICU staff so much.....

that we're back in here again! Today is a month since we were admitted to the hospital for the asthma and pneumonia. Now we are here because Aidan spiked a fever last night after his nurse left. She gave him a dose of tylenol before she left, but I checked his temp before I went to bed and he had gone from 99.9 to 102.1. I gave him a little more tylenol and a Vest treatment to help with some of the congestion he's had, and he fell asleep.

He slept all night, but this morning at 6, he was burning up again. His temp was 102.5 when I called his doctor. I took him in around 8am. His temp was down, but his breathing was terrible. She immediately said that she was sending us to the hospital. Not what I wanted to hear at all. But I can't figure out what is wrong. We've been giving him his breathing treatments plus extras for the congestion, and we've been using the Vest at least 2X a day sometimes 3 or 4 times depending on how junky he sounds.

When I got him to the hospital they drew some blood to run some tests and everything came back negative; strep, flu, mrsa. He had a chest x-ray and everything looked fine, but his white blood cell count is really high at 55,000.

Right now, I'm waiting for the doctor on call from our family practice to figure out what to do about the apparent infection that Aidan has. If it is something that we can give him in his g-tube, then I'd much rather be at home since we can put him on oxygen if he needs it and we can monitor his vitals like they're doing here. I don't like to be in the hospital any more than necessary.

Oh, well.... When I find out what is going on, I'll post more.

~Erin

info about Ambien

I know some of you have been wondering why we had been giving Aidan Ambien. This video was shared on our parents of near-drowns group and I thought it would be good to share with everyone.



I hope this helps you all understand why we are trying it. We have to start with a very small dose with Aidan because of his size. Currently we're having issues with insurance to get the entire prescription paid for. They are only paying for 15 days worth of pills at 10mg, which Aidan was at before we had to stop giving it to him. We still have refills available, so I'm going to put him back on it and go back to the smaller dose. We'll see if it does anything.

Aidan has been doing really well. The past few days at school he's been smiling and laughing. Apparently he likes Elmo, because those are the toys that have gotten a response out of him. Yesterday they got out the dancing and tickle-me-elmo and Aidan got so excited about them that his teacher said he did his excited squeal and laughed.

He's been moving his right arm and his legs a lot lately too. Yesterday when the physical therapist was here, he pulled his head back 4 different times. He is making more eye contact and is responding to much more than he had been. When Aidan got upset last night because he has terrible gas pains and cramps, the nurse said it sounded like he was saying "momma". My mom has said she thinks he's saying it too. I've heard what sounds like "momma", but I just figured it was just a sound he was making. I'm not sure he knows what he's saying. It would be nice if he did.

Anyway, we're going to take Aidan and Evan to a horse show at Wings of Eagles ranch in Mt. Pleasant on Saturday. They work with kids who have disabilities and do "hippo-therapy." That's a type of therapy that involves riding horses. It helps with body awareness and trunk control. There are other benefits but I don't feel like quoting research at the moment.

Regarding our raffle fundraisers, I don't think that we are going to continue with them because we've had minimal interest. We've had a few (and I do mean a FEW) people buy tickets, but it isn't worth it to keep trying to do this. We're going to have to figure out another way to raise money to help Aidan. If anyone has any ideas or would like to help out with organizing something, we'd be grateful. Insurance doesn't pay for everything and the additional therapies and supplements that Aidan needs alone are expensive.

I hope that everyone is doing well. We thank you all for the support and prayers and ask that you continue to pray for our family.

Thanks!
~Erin

new update

Wednesday was our follow-up appointment with the hematologist. We saw them in Concord this time instead of having to drive to Charlotte which was nice. The blood work that they did last time came back normal. There was one test that they wanted to run but weren't able to because the platelets clotted. So ended up drawing more blood to test for some other things and to redo the test on the platelets.

They are testing for something called Factor 13 and something else. I can't remember it all. Then we went down to radiology for him to have x-rays taken of his entire body. The reasoning behind this is that they want to be thorough and make sure that he doesn't having anything like bone cysts or anything that might cause bleeding. We we go back in 2 weeks for the results. The doctor also said that there was no reason that couldn't do the hyperbaric treatments. I think we're supposed to start next month.

Yesterday, Aidan had a really good day. When we got home from school he kept smiling. He responded to me kissing his cheeks and tickling him. It was so nice to see him smiling so much. Unfortunately, I didn't get any pictures, I just wanted to enjoy being able to play with him in whatever way we could.

Well, I hope that all the mothers out there have a wonderful Mother's Day!

April Raffle Winner + Carolina Speed Reminder

Congratulations to Shannon Huneycutt! She is the winner of the custom-made afghan! She will be receiving an email shortly.

As Erin stated, we hope you all will register for the 50/50 raffle. I realize these usually run for only a day or a week, but I thought it was only fair since last month's raffle ran for the whole month.

Another reminder to those of you in Charlotte and the surrounding area ...

Aidan and I will be at Bojangle's Coliseum tomorrow evening for the Carolina Speed game. Last year, we did a fundraiser there at one of the games; we are doing it again this year as a raffle for that day only. The winner will receive a 5-pack of tickets to the NASCAR All-Star Race!

I'm not 100% certain where the table will be setup, but we'll spend the second half of the game seated in the handicapped seating area in Section 108. During the first half and halftime, Aidan will be at the table; I'll be with Aidan during the 1st quarter, while my brother-in-law and Aidan's nurse will be there during the second quarter. We'll all be there during halftime. Please take the time to come by and say "Hi!".

pulmonology update

Aidan had an appointment with the pulmonologist this morning. Aside from having to wait over an hour with Evan in tow, it went okay. Basically he wanted us to come back in a month to see how Aidan is doing with the singulair and the vest in addition to his other respiratory treatments.

This doctor is new to CMC-Northeast. Today was actually the 1 year anniversary of his first day there. He's worked with a lot of kids with neurological problems and explained to me why respiratory problems and neurological injuries usually go hand in hand.

He ordered a blood allergy test, as well. I will have to take Aidan back up to the lab another day for them to do that.

I got a call from the hematologists office because the doctor had ordered a full body x-ray. I will have to take Aidan there next Wednesday after his appointment with the hematologist.

Right now, I just want to collapse. I'm exhausted. I'm working on a cake for a 3 year old little girl for tomorrow, and a couple of baby afghans, but all I really want to do is sleep. I'd give anything for a quiet vacation at the beach. One can dream, can't they?

Thank you all for your prayers and to those of you who have purchased raffle entries. I hope that you will enter May's 50/50 raffle. Thanks again!

~Erin