Monday, July 14, 2008

date set for 24hr EEG

The doctor's office called on Friday to let me know that Aidan's EEG will be August 5th. We'll have to check in early that morning and stay on the peds floor overnight. I hope that this will give us some insight about which behavior goes with which type of seizure he's having. I just wish this nightmare would end already.

We didn't have a nurse Saturday night because of some mass confusion with the staffing. We had someone on OUR schedule, but the office said it was open and when someone wanted to take the shift, they were told it was already filled. It's just extremely frustrating. It isn't that I can't take care of Aidan- I know how to take care of him as far as his medical needs go. I just get very overwhelmed taking care of him when I'm completely alone with him. It is emotionally draining. I'll be honest, last week when it was just me and him (Evan was at my aunt's), I just laid down beside him and cried. I can't help but remember how he used to be and how he used to make me laugh by doing all kinds of silly stuff. I miss how our days used to be and I'm sad. I'm so unbelievably sad. Anyway, I know this blog is supposed to be about Aidan and not my daily whining and moping... I just have a hard time putting that aside.

Aidan is doing well. He seems more alert to me. He's been watching TV (at least it looks like he's watching). He's been tolerating being capped, and we're working on increasing the amount of time that he is capped, but I think once we downsize his trach tube it will help and make it even easier on him. He's been a little fussier than usual, and I don't really know why. We should be getting the passy-muir valves today or tomorrow as well as his formula supplement so we can decrease the volume and go back to our normal feeding schedule. Feeding him every 2 hours is a pain. Other than that, we don't have any hyperbaric treatments scheduled until Friday, the center didn't have any openings, so unless they have a cancellation we're taking a few days off. It'll be nice not to have to go somewhere every day.

I'd like to thank everyone who's donated money for Aidan's treatments. I know that I have mentioned this, but for now, we've decided to hold off on purchasing a soft hyperbaric chamber. We decided that we want Aidan to do the hard treatments and then at a later point, we may look into buying a chamber. Right now, since we live with my mom, we don't have anywhere to put something that big. Aidan's equipment is already taking up a lot of space and he has to have a room to himself. We are hoping to find a house to rent in the near future, but we can't really make that decision until Russell has a permanent job. We have been looking into other types of treatments and therapies, and I'm considering buying a biofeedback unit. They are usually used to treat pain, which I'm sure Aidan does have, but it's also been helpful with the healing process. I'm not sure how to explain it, I've done most of my reading about it on Abby's website ( and Dr. Tennent's website.

Once school starts back, the Governor Morehead Preschool program will come in to start vision therapy with Aidan. I've had a referral from our neurologist for another place that does vision therapy, as well. We're still doing PT, OT and Speech Therapy. I got Aidan a hammock swing so we can use that in part of his therapy and the PT table has been made for us. Things are moving in the right direction for Aidan.

Thank you for all of your prayers and support. Despite how bad I've been feeling lately, it helps to know that you all are out there. I just have to keep praying and have hope that my son is going to get better.



Anonymous said...

We are here for you. It is good to let out how you are feeling. It helps me pray even harder when I know you are feeling so bad. Please dont stop sharing how you are.
Let it out girlfriend!

Anonymous said...

I do not know why the Lord has placed you and Aidan so heavy on my heart. Not a day goes by that I don't think about you and lift up a prayer that Aidan will have a full recovery. I can't imagine how broken your heart must be. When I see my grandson Noah I remember that he is very close in age to Aidan and I just can't imagine. Please continue to reach out to others to process this deep grief. Your innocence has been robbed in this area and you will never be the same but with time your pain will ease some. Praying for you Erin.

Anonymous said...

Hey Erin,
I'm sure no one reading this blog complains when you are having a bad day and need to vent! You have every right to be sad and angry. I cry every time I see the pictures of Aidan before the accident. He was such a ham. I pray every day that he will heal in time and come back to you. I just wish I was closer so you'd have an extra shoulder to cry on. Just remember this will be a long process and it isn't over yet, so keep praying. Who knows what the future holds!

Anonymous said...

If you were to keep your feelings to yourself on everything, you would end up in a looney bin somewhere. So do not worry about it. Our entire church here in OK is holding hands and ending prayer meeting by praying for not only Aidan, but for You, Russell, & Evan. You have so much support right now, that you shouldn't feel bad for "whining & venting." With prayers,
Jason Oswalt

Anonymous said...

Erin and Russell,

I have been following your blog almost from the beginning and wanted to tell you again how sorry I am your are going through all this. I know one of things you have said is you would like people to learn from your experience and I have. My parents live up by lake norman (not on, but within walking distance). I have shared your story with them and their neighbors and explained the importance of knowing where Caleb is at all times (our 2 year old). Also, I am even more careful with the bathtub, I have lectured my husband and babysitters the importance of never leaving the kids (we have 3) unattended.

I am continually praying for you guys and please vent as much as you can. I feel like coming over and hugging you.

We spent the week-end in the ICU due to a cashew allergy for my 2 year old. I felt so helpless and I thought of you guys. We are home and things are good but I can't imagine the long rollercoaster ride of emotions you have been on.

Lindsay Hepler

Anonymous said...

Some of the ladies I go to class with are being paid by just about any and every agency that offers home health to stay at home and take care of their own children that have disabilities. I feel this is a wonderful opportunity for the both of you. These agencies will also pay for your medical classes. You see, when you applied for services for Aidan, the state allocates so much money a year for home services and this does not include SSD. This is DDSD. Since you have hours without care from an agency, you can fill those hours yourself and get paid for it in the process.

The Tuba Geek said...

If you have any information on this, please pass it along so we can look into it.