Afghan Winner and May Raffle

Congratulations to Michelle Folsom from the sprawling metropolis of Clinton, OK. She had the winning bid for the Valentine afghan! We'll be in communication with you soon to get the afghan sent to you.

Now, on to the May Raffle! This month, we have decided to go with a simple 50/50 raffle. Tickets will be $2 for 1, $5 for 3, or $7 for 5. Like before, you can purchase tickets at our store. Also, like before, PayPal is the preferred method of payment, but other forms (other than credit card) are welcome. You will be emailed your numbers once payment is processed. You will also notice you are being charged tax. This is to offset the fees PayPal charges when we receive a payment.

We will accept entries through May 31st. The drawing will occur June 1st, time to be determined.

One more thing for those of you reading my blog who live in and around the Charlotte area ... we'd love to meet you! Aidan and I will be at Bojangle's Coliseum on Saturday for the Carolina Speed game against the DC Armor. We'll also have the opportunity for you to go to the All-Star Race on the 16th. Want to know more? You'll have to show up to the game. Tickets are really reasonable (start at $15 for adults), so I hope to see you there!

Just a reminder

Today is the last day to enter the April raffle for the custom-made afghan. We will accept entries until 11:59 PM Eastern Time. The drawing will take place the evening of May 1st.

Good luck, and Thank You if you have already entered!

Afghan Auction Update

The high bid is now $135. Bidding ends at 11:59PM Eastern time tomorrow night.

doing much better now!

Aidan is doing so much better now. I had to take him back to the doctor on Thursday because his oxygen level kept dropping into the 80's and he was wheezing. We ended up coming home with a precription for Singulair and with an order for Aidan to wear oxygen at night and if his sats dropped below 90.

Wouldn't you know it, we have all the oxygen stuff brought in and he hasn't even needed it, not even at night. His O2 levels have stayed up above 95 during the night and they haven't been dropping during the day either. I'm telling you, he's a stinker! I'm beginning to think he just likes going to the office to have all the nurses tell him how handsome he is and to rave about his eyelashes!

The respiratory therapist came out today to teach me how to use the percussion vest on him. It's this vest that is inflated with air and it vibrates to loosen any junk in his lungs. Because he's had so many infections in the last year and isn't coughing as often as he needs to get the stuff up, they suggested this. He liked it. It makes him look like I sat him on top of the washing machine on the spin cycle the way it shakes him, but he was so relaxed during and after the first 20 minute session.

I got a few pictures over the weekend of the boys. Aidan was in a really good mood the other day and smiled a lot so I was able to get some good pictures of him. Russell and I took Evan to the park yesterday afternoon. We left Aidan home with the nurse since there were a lot of air quality alerts here and I didn't want to risk him having another allergy or asthma attack. Well, for now that's all that is going on.

Aidan should be able to go back to pre-school on Wednesday. Friday morning he has an appointment with the pulmonologist. Hopefully we'll be able to schedule an allergy test and find out what all he is allergic to and I can get some more info about asthma.

Remember the raffle drawing ends Thursday night, as does the silent auction for the hearts afghan I did. Thanks to everyone who has bought raffel entries and who have bid on the afghan. The current bid on the afghan is $130.

Hope everyone is having a good week! I'll post more in a few days.

~Erin

current bid on the afghan

The current bid on the afghan is $130 as of this morning. Bidding is open until next Wednesday. I really appreciate the interest and everyone's support.

Thanks!
~Erin

eye doctor and afghan

Met with the ophthalmologist today. He dilated Aidan's eyes and looked to see if he had any bleeding in or behind his eyes. The good news is that he doesn't.

The afghan is FINALLY finished. Instead of doing an ebay auction, we are going to do a silent auction. We'll take bids on it for a week starting today 4/23/09 and ending 4/30/09. Email your bids to prayforaidan@gmail.com and put "afghan" in the subject line. The winner will be announced on May 1st, when we also announce the winner of the raffle.
edited to add: We're putting the starting bid at $25 to cover materials used.

I believe the next raffle we are going to do is a 50/50 raffle. Russell has more details about it and will post them later.

visit with the hematologist

Everything went well this morning considering that I had to take both boys. There wasn't a whole lot for the doctor to do. She went over Aidan's medical history and his medicines. We talked about the last MRI's. She was very nice, which, after Friday was not what I was expecting.

So basically, they drew some blood to run some tests. While the nurses were trying to find the vein in Aidan's little pudgy arm, he started smiling and when one of the nurses started talking to him, he looked her right in the eyes and gave her a huge grin. I'm guessing they were tickling him. The doctor also wanted us to go back to the eye doctor to have him dilate Aidan's eyes to check for any bleeding there. They were able to get us in there in the morning. So it's back to Charlotte we go tomorrow at 7:30am.

In addition to all of that, the doctor also wants to do a full body x-ray to make sure there is nothing going on that would contribute to the bleeding. I'm not exactly sure how all of this is correlated to him having a bleed in his brain, but what do I know!? If the blood work comes back normal then they will run more tests to rule out the "rare" diseases that could cause this.

So, I'm praying that we find out what is causing the bleed with this first battery of testing. I certainly don't want him to have some rare disease that is the culprit. I can honestly say that I can't take any more surprises. I know the Lord only gives us what we can handle, so I'm letting him know in advance that I'm full to brimming with all I can take at this point.

In contrast to all the not so great stuff going on, Aidan has been amazingly alert since he's started feeling better. He is making more eye contact and is smiling more than I've seen since he first smiled at us.

So, that is what happened today. I will post an update tomorrow after the visit with the eye doctor. Please pray that the doctors are able to find out what is going on. I had a dream about Aidan this afternoon after we got back when Evan decided that it was nap time. He was doing much better in the dream and was showing me just what his temper and personality were like before the accident. He wasn't completely better, but he was getting there. I hope it's a sign of what's to come. I'll take Aidan at his worst if it means he can be normal one day.

~Erin

Retraction for 4-17-2009 Update

As I mentioned on the 17th, our appointment with the hematologist was canceled, leaving us wondering when we were going to get to see him. We got a call yesterday from the lady we spoke with when we scheduled the appointment. I don't know if she heard the whole story regarding my full-blown tirade, but it is obvious that she heard that I had called in and knew immediately what the problem was. She proceeded to inform us that she accidentally deleted the wrong appointment and that everything was a big misunderstanding. She also informed us that she was out of the office on Friday and if she had been there, we wouldn't have had the problems we had when I called in.

So, when all was said and done, we were told to come in when we can and they would squeeze us in. Erin should be on her way into Charlotte now for that appointment.

--Russell

False alarm, He's coming home!

I called Aidan's primary doctor a little earlier after talking to Russell and finding out that Aidan was put back on oxygen last night. The doctor on call is not familiar with Aidan's case and was unaware that we have all the necessary medical equipment and oxygen at home along with private duty nurses. Dr. P (our primary) called the on-call doc and explained the situation to him, so Aidan is on his way home now, as I type this.

I was about at the end of my rope today trying to deal with Evan and decorating a cake (which turned out really cute) and wanting to be with Aidan, too. Someone seriously needs to find a way to clone us parents so we can be in as many places as we need at one time.

Anyway, I just wanted to let you all know that little man is on his way home. Hopefully we won't be going back anytime soon except to visit and drop off a thank-you to the PICU staff.

:) Erin

Well, we THOUGHT he was going home ...

I left the hospital last night for a little bit to run an errand for Erin. At that time, he was still off the oxygen. When I got back around 1AM, the oxygen was on. I asked the nurses and found out it was because his sats were all over the place again. That pretty much resets the 24-hour scenario. They took him off the oxygen again about 9 this morning.

I am beginning to get a little miffed at our nurses on the Peds floor. 2 nights in a row, he has had "blowouts" of pee and/or poop late at night. The nurses say they have been changing him, but I have been asleep or not here when they did it. Maybe it's the antibiotics (diarrhea) or the fact they had been pumping so much saline into him (urine), but I'm also having a hard time believing that he can have these kinds of things happening only 2-3 hours after changing him. He has rarely if ever done that at home.

They also don't appear to be doing basic "technical support" when Aidan is showing issues. Through most of last night, his sats were all over the place again even after he was put back on oxygen. I repositioned his sensor and, lo and behold, he's no longer all over the place! Now tell me: wouldn't you expect someone who had gone to school for 8+ years of medical training to do that before an Eagle Scout IT technician whose last medical education was for his First Aid, Lifesaving, and Safety merit badges 15+ years ago to do the same?

I spoke with one of the other Respiratory Therapists, who also happens to be one I highly trust. She assured me that the last thing they want to do is put any kid back on oxygen, and that they did everything that I did last night when he started showing the same symptoms while I was gone. I know that I am Aidan's advocate, so I may have to take steps to make sure they are doing what they say they are doing, provided Aidan ends up back at the hospital in the near future.

I've tried to not call their hotline because I didn't want to come off as a jerk; however, I very well may do it later today and voice my displeasure if I continue to notice this discrepancy continuing.

Anyway, I'll get off my soap box now. Just keep Aidan in your prayers as you always have and ask for Aidan to get to come home tomorrow.

--Russell

doing much better

Aidan was taken off of oxygen today and is now on room air. He's getting breathing treatments about every 4 hours and is still getting antibiotics, but they said once he was off of oxygen for 24 hours he could come home. So hopefully he'll be coming home tomorrow! These are some pictures that I took this afternoon. You can tell Aidan is feeling much better. He was actually smiling and looks and sounds much better than he has in a while.

He was even making sounds and moving his lips and tongue like he was trying to say something. My mom swears he said "mama" the other night. Sometimes he does make sounds like that, but I never know if they are intentional or not. I'd like to think he's saying "mama".

I've been pretty much a basket case lately. I cry just looking at him. I want to put Aidan in a bubble to protect him and make him better. I just miss him. I'm missing the little boy I know he would be today if he'd never had this accident. It's so hard to see other little boys around Aidan's age, and they are running and playing and doing typical 3 year old stuff. I just want to tell their parents to hold on and never let go of those memories because they're gone in a flash.

I've read too many stories lately about other children who've had near-drowning accidents who've recently died from complications. I also just learned of a family who's 2 month old slipped under the water in their bath with the parent turned away. I'm not blaming and I'm not judging, because at some point, we've all done it. The phone rings or we forgot to grab a towel or something and you turn your back for what you think is just a second.... but it's never a second. Whether it's a bath tub or a pool or a pond or a lake, or a bucket.... never leave your child alone around water. Never think that it'll just take a second or that it could never happen to you because you're not THAT kind of parent. It happened to us and it's happened to so many other good and loving families, and even worse is that it happens to innocent children who are abused.

I hate to turn this posting into this, but I just felt the need to pass along that warning. Warmer weather is here, and the number of drowning and near-drowning accidents increases. Please just be aware.

(This neurotic-mommy warning brought to you by Erin)

Back to the issue at hand, Mr. Aidan coming home! I'm ready to have him home, sleeping in his own bed. Thank you each and every one for the prayers and the concern. I've had so many people asking me how he's doing, and I really appreciate it.

Hope you all like the pictures! :)

update

Today is the 1 year anniversary of the day that we brought Aidan home from the hospital after his accident. We were so happy to have him home again after not having him there for 2 long months. A lot has happened and Aidan has grown a lot in the last year.

So for an update on the current situation. Aidan is out of the PICU. He is now in a regular room, off of the continuous nebulizer and is breathing well. He sounds a lot better than he did. I'm hoping they'll let him come home maybe tomorrow or Sunday.

For now that's really the only news. I know that the doctors want us to see the pulmonologist who has been out of town this whole week, so maybe we'll get to see him next week. Aside from that, I'm just ready to have all of us under the same roof again. This whole thing has us all turned upside-down.

Thank you all for the continued prayers. I'll never underestimate the power of prayer. I just wished my prayers were answered the way I wanted them to be sometimes. :)

~Erin

4-17-2009 Update

The natives have been growing restless ;), so I thought I would post an update for today.

Aidan was moved out of the PICU this afternoon and into a room on the regular Pediatrics floor. They have reduced his oxygen and nebulizer treatments, and he is starting to sound a lot better. We aren't sure as to an exact time frame yet, but our hope is that he will be home before Monday. I hope to know something tonight or tomorrow morning. Getting discaharged by Monday is important, because we have an appointment to make and we are determined to make it, come Hell or high water.

Let me explain ...

As mentioned previously, we found out Aidan has a subdural hematoma. Dr. C decided that we need to see a hematologist (blood specialist) to make sure he doesn't have any disorders. We set an appointment for the first week of May, then I called them back and changed it that day to this coming Monday so I could be there for it. We even got the paperwork a few days later to fill out so we wouldn't be waiting as long to see the doctor.

I called them today to see about possibly changing it, and discovered the appointment for May was still on the books! I asked about the Monday appointment, and they said 1) a mistake was made which caused us to lose the AM appointment and (even worse) 2) The best appointment they had for us the same day was that afternoon! That doesn't work when we have to bring Evan along; I feel bad when Erin has to try to handle both kiddos at the same time.

Erin and I have come to the conclusion that, regardless of what they have told us, we will show up there early in the AM with paperwork in hand. We will show up there and sit and wait and tell them that we are there for our 9:30 appointment. Unfortunately, I will have to leave to go to work a little later that morning, so hopefully they will see Aidan before I have to leave. As a precautionary measure, I've already called Dr. F (the neurologist on call this weekend) and let her know that we need a new referral.

So, Charlotte Hematology and Oncology, I hope you're ready for us, because we're comin' like a bat outta hell!

Easter pictures

Here is the slideshow of Aidan and Evan's Easter pictures. I think they turned out great. I just have decide what I want to order (all of them except the last 2 with me and Russ in them). We weren't expecting to get our pictures taken that day, but I love the ones of the boys. The wind was blowing a lot so Evan's hair is wild. :)

http://www.photobiz.com/slideshowbiz/slideshow.cfm?slideshowID=56688&photographerID=10389

4-16-09 update

Thanks everyone for praying for Aidan and asking how he is doing. He is still in the PICU. I spoke with his primary doctor last night and it does look like he has an area in his right lower lung that looks like it might be pneumonia. They did an x-ray yesterday morning and the area was showing up more than it had the day previous and when they compared it to the x-ray done on Saturday, they could see where it was. It was so faint on Saturday that it wasn't even noticed. The internist at the hospital (who we absolutely love to death), said it could be "air space disease".... whatever that means.

We're not sure if Aidan might have aspirated a little food and then his allergies just exaserbated the whole thing and brought on the asthma or if he's had the asthma all along and his lungs are just weakened from the accident and having the really bad pneumonia from the start. His doctor did say that food allergies, exema, and asthma usually go hand-in-hand. Aidan has a peanut allergy that we know of, he's always had really dry skin, and now the asthma. Funny thing is, no one in my family has any of these. So, my guess is that someone on Russell's biological side has some if not all of these problems since they can be genetic.

Oh, well. We're going to be in the hospital through the weekend according to all the doctors. We had been hoping to go to Raleigh for my friend's little boy's 2nd birthday party. He and Evan are only 2 months apart and I thought they'd have a good time playing together.

So far that's all that is going on. They've got Aidan on antibiotics and steriods in addition to all of the continuous breathing treatments that have him so shaky he looks like a junky needing a fix.

Please keep up the prayers. He is starting to sound a lot better and his color is good, I'm really hoping they get him off the continuous neb so that he can start being fed again. He hasn't had any food in 2 days.

I'll try to post an update tonight if we find out any more news.

~Erin

a quick update from ICU

Aidan is getting a continuous albuterol breathing treatment, and has been since he got in here. They've got fluids going and are giving him some antibiotics. His breathing is still pretty fast and he's working pretty hard, but his O2 sats are currently in the 98-100 range. They've been down into the low 80's at times today.

From what I've gathered from the doctors, they're thinking it is asthma or some type of virus that affects the lungs like an asthma attack. Asthma is a completely new thing for me. I know how to deal with allergies and all, but trying to get our apartment set up to deal with Aidan having asthma is going to be interesting. It looks like I have some more research to do. Fun!

Well, I think he is ready to sleep for the night, so I will stick around in his room a little while longer and then go to my little sleep room to pass out for a while. I'm exhausted- mentally, physically, emotionally.

I'd like to thank everyone for their prayers and well wishes for Aidan. I'll try to update more tomorrow if anything changes. Hopefully we'll be going home soon.

~Erin

Back in the PICU

Aidan has been sounding worse and worse lately. We went to the ER on Saturday after Aidan had a full-blown fit and his eyes were rolled back for a good part of the morning. They looked him over, then gave him some antibiotics and breathing treatments. They seemed to help, but only for a little while.

Yesterday, Erin called Aidan's primary doc and get an appointment for today. Meanwhile, I went to work. Erin called me this afternoon and said we were headed to the hospital yet again. We were on the pediatric floor for less than an hour when we were told we were back to the PICU. Aidan is simply having a very difficult time breathing. The docs and therapists think he may have asthma rather than pneumonia; the X-rays don't really show the tell-tale signs of it, I guess.

I have no idea how long we'll be here. The PICU staff seem to think it will be a short-lived stay. I hope so. Pray he'll get better soon so we can go home.

At least this is happening during his Spring Break ...

-- Russell

MRI results

Dr. C called me this morning with Aidan's MRI results. He said that the larger (older) hematoma was completely gone. But the other area, on the right side of Aidan's head is a little larger. Since we have no idea what caused the bleeds, we're going to have to go to a hematologist for some tests. Hyperbaric treatments are on hold until we have that appointment, just to be on the safe side.

I decided yesterday to set up the bounce and slide for Evan to play in since we had a swarm of wasps outside our patio and didn't want to risk him getting stung. Aidan's nurse suggested putting him in the bouncer, so we put him in. She was able to get in with him. He seemed to enjoy it. We bounced him a little and he was completely calm and relaxed the entire hour he was in there. I got a few pictures of him using the camera on my phone since the batteries died in my other camera.


I had an older picture on my phone of Aidan too. I think he was smiling and I just happened to catch him with an amused look on his face.



Please pray that we're able to find out what is causing the bleeding in Aidan's brain, and that we're able to stop it. I also ask that you pray that we're able to control the seizures completely with his meds. Until we get those under control and get them to stop, Aidan isn't going to be able to make much more progress, especially with his head, neck and trunk control.

Thank you everyone!
~Erin

some pictures from today

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These are a couple pictures that Russell was able to get with his phone. They didn't turn out the greatest, but I thought they were cute. I completely forgot to grab my camera as we were heading out the door. Evan loved the bunny, but the bunny loved Aidan. The bunny's name was Hamilton, and he laid right down beside of Aidan and didn't move. In one of the pictures he's giving Aidan a kiss.

Before I had Aidan, I had 3 rabbits. This one was the size of the very first one I had, Cole. It almost makes me want another rabbit, but I'm not quite that sadistic. :)

Hope you enjoy the photos.
~Erin

feedback about another raffle idea

Hi, everyone! We've had quite a few raffle entries for the custom afghan. You all have until the end of the month to enter if you'd like.

I'm playing around with a couple of ideas and thought I'd throw them out here to see if I can get some feedback. One of them would really only be useful to those fairly local or within an hour or two. A friend of ours told us about a silent auction for a customized cake and invitation package. That particular item raised a few thousand dollars, but it was also a silent auction. Basically, if I was to do something like that, I would make a cake for whatever occasion (birthday, shower, possibly wedding) and also make custom invitations/ announcements to match the theme. I do have experience in both areas, and it's something that I enjoy doing. I would be willing to deliver the cake within a reasonable distance.

The other idea was along the same lines, but it would be for personalized cookie favors or cookie bouquet (these can be shipped if necessary) and the invitation or announcements.

I'd greatly appreciate some feedback. We're coming up with other ideas, obviously not with me doing all the work, but some of the ideas are for a TV, maybe a camera, things like that. If you have any ideas we'd love to hear them.

We appreciate all of the support. By the way, Aidan's MRI was on Thursday. We haven't heard anything back from the doctor, but I'm hoping we hear from him soon. We're taking the boys today to have Easter pictures made with some live bunnies and chicks. I'm looking forward to seeing how they turn out.

I hope that everyone has a great weekend!
~Erin