Yet ANOTHER Change to the Comment Process

Last night, I made some changes to how people can leave comments because we had received complaints about not being able to see the verification image. I made it to where you didn't need that image, but we would moderate comments so we could review them before they are officially posted.

Fast forward 6 hours ... Erin gets her first comment for moderation. Erin rejected it immediately, but I think it needs to be posted for the world to see:

YOU are unbelievable. YOU don't watch your son, you just assumed some one else was watching him, YOU are totally responsible, YOU are his mother and it is YOUR job to be sure he is safe. YOU knew there was WATER at your father in laws. YOU were just excited about having a party so you could eat.
It is YOUR fault and you blame the government???? 
Paybacks a bitch.

This comment was left by an anonymous party ... the F***ING COWARD didn't even have the cajones to put his or her name to the comments!!!!!!!!!

We love receiving comments from our friends, family, and even complete strangers who have only recently heard our story. We also know some of you post anonymous comments that are positive and even put your names to them; however, the purpose of this blog is not to get bashed or placed on a guilt trip. We deal with this every day and have to live with our own questions and doubts. This is supposed to be a positive experience for us and our readers, even though we may, on occassion, vent our frustrations.

So, I am making yet another change to how you can leave comments. You are now required to have a login to leave a comment. We hate doing this, but see it this way: if you are going to leave comments like that, we want to know who you are. To rephrase a common saying: Better to post nothing and let us think you're an ass, than to post something and have your name attached to it so we can publicly label you in the blogosphere as one. 

If you have trouble registering, there is help available on this site on how to create a username.

-- Russell

update

I figured I should post an update. Aidan had the evaluation for the vital stem therapy. We start going 3 days a week for that starting next week. Vital stem is basically like TENS therapy except that it is for swallowing. They put these little conductor pads on Aidan's neck and an electric current stimulates the muscles. It is supposed to strengthen the muscles. From research that I've done on it, it is really successful. I don't know how long we'll have to take Aidan for treatments. If he shows increased improvement with swallowing, then they can do another swallow study. Once Aidan successfully passes a swallow study, we will be able to reintroduce foods by mouth.

Not a whole lot has changed with Aidan since I last posted. The other day during his OT, the therapist had him on a yoga ball and was rolling him back and forth and he was focusing/tracking her, so that is new. He's had some increased seizure activity and has had several storms this week. It's very exhausting when he is like this.

We are also now dealing with the possibility that we are going to lose our nursing coverage because they don't think that Aidan's condition is "serious" enough to require a nurse. They only want to offer us a CNA, but CNA's aren't legally able to administer medication. If Aidan were to have a storm and I weren't here, the CNA couldn't give him anything, they couldn't even give him his regularly schedulded meds. I'm just irritated by the whole thing.

If we had left the trach in, that would have made him qualify for the "hospital" level of care, but because he can breathe without the trach, he's miraculosly cured... yeah, I wish! Sometimes, well, no, MOST of the time, I think that our government absolutely SUCKS! Those who manipulate the system and are here illegally are given anything and everything, but someone who truly needs assistance is left hanging.

I'll be the first to admit that Aidan doesn't always require a lot of nursing intervention WHEN he's having a GOOD day... but when he's having a BAD day and he's storming 4-8 hours at a time, he needs a lot of care. He has medication scheduled around the clock, and I can't always be here. I have a 15 month old who needs me too. Evan has to go to the doctor, I have to go to the doctor or the dentist and run errands. It isn't practical for me to drag a 15 month old and a 2 and a half year old who is immobile into Walmart to buy groceries... I don't have enough hands! Maybe if I clone myself, then I can get everything done. If anyone knows how I can do that, let me know.

To top all of that off, Russ and I went to look for apartments today. We can find several that are big enough and within our budget BUT they are income restricted. We would have to have 7, yes 7 people on the lease, with only Russ working to even qualify to live in one of these places. GIVE ME A BREAK! How in the world is anyone supposed to live and keep their heads above water in this place? It's absolutely disgusting.

Anyway, now that I have ranted. I think I need my therapy... I crochet to keep from going insane... that's what I've been doing lately instead of boring you all with my rambling. Hope you all enjoy your weekend. Some prayers that Russell's job goes permanent or the contract is extended would be greatly appreciated. We actually did find an apartment that is perfect for us and it is handicap accessible. We need to move quickly on it, but I'm cautious because of this whole situation. I know my mom is ready to have her house back to herself and I'm ready to get out. It will be better on all of us. But I don't want to go into something and get in over our heads. Thanks again for all of your support and prayers.

Erin

The sweet sound of laughter

Yesterday after I got back from the dentist, Aidan and I were just hanging out watching TV. I was on the phone with my brother and heard what I thought was Aidan fussing. I looked over and he wasn't fussing.... he was smiling and LAUGHING! I burst into tears immediately. My baby laughed! I don't know what was so funny but he had laughed for the nurse while I was gone too.

Several weeks ago, Russell heard him laugh in the hyperbaric chamber, but we hadn't heard him do it since then. I ran around trying to find my camera so I could get a video of him laughing, and I called my mom so that she could hear it too.

So, I'd like to share the video of Aidan laughing with you all. One side of his face is still weak, so he has kind of a half smile. I can't even begin to tell you all how excited and happy I am. Hopefully in the next few weeks we'll see and hear even more from him.

I have to take him tomorrow to the speech therapy center for them to do an evaluation to see if he is a candidate for the vital stem therapy (which he should be). This will help strengthen the muscles for swallowing so that we can start introducing solids by mouth. It's going to take some time before the g-tube will come out... probably years, but we're okay with that. Aidan is healthy and is obviously gaining weight. That's all we can ask for. :)

Hope you all enjoy the video! *If the music player is interfering with hearing the video, just pause the player at the bottom of the page so you can watch the video.*

big boy bed

I finally got the mattress for Aidan's bed. I'm getting ready to put it together and set up in his room. I can't believe that Aidan is big enough to sleep in a twin bed. I miss his little car bed that he slept in before the accident.

He's gotten so big. I also just bought him new fall/winter clothes because he doesn't have clothes to fit his chunky butt. I have to say that I LOVE Target for kids clothes, especially play clothes. They are cheap, but pretty well made. I also found some stuff on sale at Old Navy. I'm all about the sales and clearance items. When I have time I like to go to thrift stores and consignment shops to dig around. You can really find a lot of things when you have the time to browse around.

Anyway, we're all doing well. Aidan is doing a lot better. I think I figured out why he was getting so upset and crying so much. It looks like he's been cutting his molars. He has never tolerated cutting teeth well. With Evan, we hardly ever notice he's got some coming in until they're already through completely.

I'll post some pictures of Aidan's new bed once I get it put together. I've been keeping myself busy making afghans, so I haven't been on the computer much.

I hope that everyone is doing well. Thank you for your continued prayers and support. Have a great weekend and please pray for the people along the Gulf Coast that are being affected by Ike.

~Erin

Another update

Hi everyone! I just thought I'd let you all know that Aidan is doing okay. He hasn't had a bad episode of storming since we left the hospital the other day. All of the tests came back normal, so we aren't really sure what caused the episodes. We have something to give him now when he acts like he is in pain and that helps if we aren't able to help him calm down otherwise.

Other than that, not much has been going on. We have 2 more hyperbaric sessions to do and then we are on a break until October 1st. It will be nice to be able to stay at home in the evenings instead of having to run around all the time.

We went to a family reunion this afternoon. It was so hot! I got a few pictures of Aidan but haven't got them uploaded yet. Here are the ones I took the morning he went in for his bronchoscopy. These are the last pictures I have of him with the trach in, and one with him and Evan together. :)



He is doing so well without the trach. His oxygen percentages stay in the high 90's or at 100 most of the time. I think he is doing a lot better and that he is improving little by little each day. We just have to keep praying and have hope that he's going to get better.

Thanks for the support and prayers. I'd like to also thank everyone who has donated money for Aidan's care and his treatments and equipment. I don't think that Russell or I could ever say it enough, and I know that I've been horribly slack at writing "thank you" cards, so I just wanted to tell everyone that we are so very grateful to everyone for their kindness and generosity.

Hope everyone has had a good weekend. For those who are in the path of the hurricanes and tropical storms, we're praying that everything is fine and that everyone stays safe.

update

I apologize for not posting the pictures, I'll get those up soon. For some reason Aidan began crying/storming Saturday after we got home. It lasted from about 2pm until just after midnight when I guess he finally got so exhausted he couldn't cry any longer. He woke up Sunday morning in much the same way. We tried everything to calm him, but nothing worked. He acted like he was hurting and we just couldn't figure out what was going on.

Aidan did calm down long enough to go to his hyperbaric appointment Sunday morning, and even slept through the session. On the way home, though, he started crying again. We finally decided to call his doctor and by the time we got a call back he was starting to settle down. He was quiet and slept for almost 5 hours Sunday afternoon. He woke up and it was like someone flipped a switch and he started storming/crying again. We called the doctor back and she came out to the house, this time to see Aidan in the midst of the storm so she could see what was going on.

There wasn't anything obviously wrong with him, so she sent us to the hospital to stay overnight so they could run some tests to rule out any infection or anything like that. Go figure that he would calm down when we got to the hospital and he went to sleep. Had the nurses and other staff not had to mess with him, he would have slept through the night. He only had one brief crying spell about 4am Monday morning and the rest of the time was quiet.

All of the tests came back normal, so we aren't sure what is causing the sudden onset of the crying. To me it looks like he's in pain. The doctor sent us home with something for pain to give him as needed. We have a follow-up appointment with the ENT this afternoon so they can take a look at the trach stoma and make sure it looks okay. We're not sure if maybe that is causing some pain or discomfort for him. It is always covered by a dressing so it should be okay.

Anyway, I don't know that this would be a set-back. Aidan's oxygen sats are really good. They're usually between 98-100%, so as far as not having the trach goes, he's doing great. Who knows what the other is. Maybe it's just a phase. I hope it goes away soon, because I can't bear to listen to him crying when I can't fix what is wrong. Heck, I don't even KNOW what is wrong.

Please pray that whatever is upsetting Aidan or causing his pain is resolved soon. He's been doing so well, I hate to see him like this. It just breaks your heart to hear him cry.