We started the "hard" hyperbaric treatments yesterday. By "hard", they are in a hard chamber instead of the soft, bag chamber we've done the previous 41 treatments in. The biggest difference is the fact that 100% oxygen is used at even more pressure. If you'd like to read more about the center we are going to, you can visit http://hboinfo.com/ncarolina.htm. There is a lot of info there and they do a better job of explaining it than I can. We've decided that we're going to do Aidan's treatments at the center instead of trying to purchase a soft, "mild" hyperbaric chamber. The benefit to him is much greater.

This week Aidan will do 5 treatments and then we'll have to schedule the rest. The plan is to do 40 treatments and then take 3-4 weeks off. Hopefully in that time his stander will arrive and we'll be able to get him upright and bearing weight in his legs again.
Aidan seems to have done okay with the treatments yesterday and today, although he had a rough night last night. I'm not sure what the problem was. Today while he was in the chamber with Russell he rolled from his back to his side. Russell wasn't sure if Aidan did it on his own or if he did something to "help" roll him. I've noticed that he seems more alert when he's awake, but by about 8:30 he is ready to go to bed. He was so sleepy this evening.

I forgot to mention that on Monday night I put Aidan on his tummy on a wedge and he did great. He usually cries when you first move him to his tummy but then settles down and will fall asleep once he's comfortable. This time he didn't fuss at all and he even tried to turn his head on his own. I ended up helping him a little, but he got halfway there without any help.

I've bought a hammock swing on ebay and will be getting a stand to use with it so that we can swing Aidan. I have the foam needed to make him a raised therapy mat/table, and just need a frame built.

This is the type of table I'm wanting to have made. I know some people have asked me what I'm talking about when I mention a therapy table.

Thank you everyone for your continued prayers, and we'd like to thank everyone who has donated or bought a wristband to help us with expenses related to caring for Aidan. We don't know a lot of you, but we consider you all friends and we keep you all in our prayers as well. I pray that I continue to have good news and progress to update you all with as we go through all of this. Aidan is going to surprise us all, I just know it.

Blessings to you all,
Erin

Happy 1st Birthday, Evan!

Yesterday was Evan's first birthday. We had his party Saturday. I promised to post some pictures, so here they are, along with some pictures of Aidan in his new "ride". His wheelchair/stroller was delivered on Friday. It has a tray on it so I decided to try some hand-over-hand drawing with him, and we made a card for Evan for his birthday. I tried to post this last night but we kept having storms and the power was flickering.

We have checked out a new hyperbaric facility. They have the hard chambers there. The grant that we received from HUGS should help us pay for most of the treatments and the other money that we have raised to buy a soft chamber will be put toward other equipment like the biofeedback unit, and some physical/occupational equipment that insurance will not cover. I'm looking at getting a hammock swing and stand for Aidan. The occupational therapist put him in a hammock last week and he seemed to like it. I'm also hoping to get a therapy table built for him so that we don't have to get him down on the floor all the time. It's really hard on my back to try to get him up from the floor, I'd hate to see how it's going to be when he gets much bigger. Aidan already weighs 35 pounds and is 36.5 inches long, at 28 months old. Everyone comments on how big he is.

Well, I hope you all enjoy the pictures. Notice the one with Bella (the puppy) snuggled in next to Aidan in the crib. She slept like that for a long time on Saturday.

The poker run went well Saturday night. I'd like to thank all of the people who rode for Aidan, those that donated and who also purchased wristbands. I think the preliminary total was about $1200 and we also sold about $150 worth of wristbands. We went out there for the dinner and for everyone to meet Aidan. Thanks again everyone, we greatly appreciate all of the support and generosity.

Thank you all for your continued prayers. Next week is the SPECT scan (June 30) and the following day is the appointment with the ENT to find out about the passy-muir valve.

Some other good news- Russell was offered a job. It's only a 2 month contract and it starts on June 30th. While he was on his way to fill out the paperwork this afternoon, another place called him and they want to do an interview tomorrow for a different position that would be a 6 month contract to permanent. I think he's going to go ahead and do the interview. A 2 month contract is okay, but if he has the possiblity of getting a longer term position, I'd rather he go for that one.

From the beginning things have just worked out. Russell lost his job right before the accident, and things have just fallen into place from there. God has a plan, we're just following the best we can. I have hope that Aidan is going to get better, that in a few years we'll be able to look at him and just be amazed at the progress he's made. I'm hoping that somewhere in all these plans that God has, he has a plan for us to have our own place. I'm ready for us to be in our own space again. We need room to spread out and my mom needs her house back. We'll just keep praying. :)

2 months at home

Aidan has been home for 2 months, not counting his brief stay at the hospital shortly after coming home. It feels like it's been much longer. Monday was our follow-up appointment with the rehab specialist. She said that Aidan is looking good. We addressed some issues with his leg braces and hand splints, but overall, there isn't much to tell. I filled her in on Aidan's progress and other doctor's appointments. I told her about the broncoscopy and our hopes to get Aidan weaned off of the trach by the end of the summer. She seemed to think this was good.

This isn't one of my favorite doctors, but she is nice to Aidan. We have to go back in 4 months to look at possibly having botox injections in the muscles in Aidan's legs if we can't get them to loosen up more. I think that once we get the stander a lot of his range and flexibility will return. It's just going to take some work to get him back to what he was able to do when we were in the rehab facility.

A lot of people have said that we should consider getting a puppy for Aidan. I'm seriously considering it because neither Paco, our chihuahua, or Max, my mom's Yorkie, wants to have anything to do with Aidan. They act like they are terrified of him. Bear, our lab, isn't allowed inside since we live with my mom. If we had our own place, I'd rather he be able to come inside because he is really well behaved and he likes to be with us. Russell and I always said if we were to ever get another dog it would be one that wouldn't shed so much. We really would like to get a miniture labradoodle since they either don't shed or have very minimal shedding, and they have similar personalities and traits of labs. Bear has always been good with kids, and I think a similar puppy would be good for Aidan.

I don't want another small, yippy dog, though. The minitures are between the 35-40 pound range full grown. I did find a group that donates these kind of dogs to families with medical or special needs, but they are in Texas. I'm not all that fond of the idea of going to a breeder when there are so many dogs and puppies in shelters. Finding a labradoodle puppy or similar to meet our needs is going to be nearly impossible. Anyway, I guess we'll just have to wait and see what happens and borrow my cousin's puppy, Bella, so that Aidan can love on her.

I'm willing to do just about anything to see Aidan smile on a regular basis and eventually be able to run around and play with a puppy. That's what I dream about.

Evan goes for his 1 year old check-up tomorrow. I'm sure that will be fun... really. The rest of the week I have to get things ready for his birthday party. I'm making his cake to look like a sand bucket and a beach ball. I hope it turns out okay. I'll be sure to take pictures of everything and post them. Saturday is a poker run for Aidan. I'm not really in the loop on that one because someone outside of our family is planning it. I just know when and where to show up after the bike ride. I hope they have decent weather and turn out for the event.

I just wanted to say thanks to everyone for their continued prayers, love and support for Aidan and our family. Even though we don't personally know a lot of you, I'm glad that you all have been touched by our little man. I wish that you all could know him and spend time with him. He's a miracle.

Blessings,
Erin

a rough day brightened with smiles

Aidan had a pretty rough morning and early afternoon today (Sunday). He had several bouts of vomiting and had to be suctioned a lot today. We finally figured out what caused the increased secretions and the mucus on his stomach was what was causing him to vomit. Let's just say that he was pretty miserable, as were Russell and I, especially after getting to bed at 3:30am. We didn't have a nurse Saturday night and I'm not comfortable not having a nurse with Aidan at night. Russell and I have to sleep sometime. As long as Aidan has the trach, I want a nurse with him during the night. I don't need for him to vomit and aspirate it into his lungs.

Anyway, after a couple came this afternoon to visit Aidan and do some energy work (reike/healing touch) with him, he calmed down and we were able to go visit my grandparents and family for Father's Day. When we got there I put Aidan on the couch and my Mamaw started talking to Aidan and showed him my cousin's little puppy (the one in the pictures from last weekend). He immediately smiled! He smiled not once, but 3 times! I saw the first one I started bawling, I saw the second one and I couldn't stay there, so I missed the 3rd. Nothing I've done has gotten a smile out of him. I was so happy to see him smile. I know in the picture last week it looked like he was smiling, and he makes those kinds of faces, but you can never really distinguish whether they are smiles or grimaces. His smiles today were obvious smiles.

Aidan also turned his head twice to look at Evan while we were driving down to my grandparents (it's a 45 minute drive). Evan evidently knew that Aidan was looking at him and said "hey" to him. It was so cute. I wish I had had a video camera to capture it.

Anyway, I just wanted to share this news with you all. Let me just say that seeing my baby smile after 4 months is one of the best thing in the world.

Monday (tomorrow) marks 4 months since the accident. Our lives have been forever changed. I don't know how I feel from day to day. I have my good days and bad days, just like Aidan does. I still have hope that Aidan is going to recover from this, even though some days it feels like I'm at the end of a very long tunnel. Seeing Aidan smile renewed that hope.

Please continue to pray for Aidan's complete recovery. Pray that he continues to surprise and amaze us each day with his achievements. I hope all the fathers and grandfathers enjoyed their day.

~Erin

Yet another Mark Schultz song for inspiration!

Erin and I recently purchased Mark Schultz's Broken and Beautiful album, more specifically for a couple of songs we knew were on there. It was the first song on the album, though, that really grabbed my attention. The song is called "40 Days".

We were listening to it today on the way back from a visit to Erin's grandparents when I said that we should add the song to our playlist on the blog and asked her why I thought this. I was thinking of the lyrics, but Erin said something that immediately grabbed my attention: "Because Aidan was in the PICU for 40 days?". I had totally forgotten how long Aidan was in the PICU, but that made perfect sense.

For me, the lyrics say a lot. The lyrics talk about how when we are in the midst of a trial or troubles, we should seek out God, as he provides us with everything we need to make it through.

Here are the lyrics:

Lord, I came to the mountaintop
To be with You
I felt Your grace falling down like rain
And I was made new

But there are times like now when I’m all dried out

(Chorus)
And it’s like 40 days out in the desert
Feeling like I’m lost forever
And crying out for You
But in these 40 days I’m going to seek You
With my heart because I believe You
Have brought me to this place
These 40 days

Lord, Your ways are not my own
But I trust You
Lord, You say, “You are not alone,
For I am with you”

But there are times like now when You can’t be found

(Chorus)

‘Cause You are with me
You never leave me
Even when my world turns upside down
‘Cause there are times like now when I will
Trust somehow

(Chorus)

Well, there is a light at the end of the tunnel…I know

okay, so we have music now

I figured out how to add some music to the site. I got it from www.playlist.com. I use it on my myspace page, and thought it would be nice to add some music to Aidan's blog. These are just a few of my favorite songs right now. I hope you like them. If you have any suggestions just throw them out there.

Aidan is doing well. We have met with some new therapy providers since the ones we had were only approved for about 9 visits. I'm hoping that Aidan will continue to respond well to the therapies.

Keep praying for him. The power of prayer is an amazing thing. Aidan is such a little trooper and God is working miracles in and through him daily.

Thanks everyone!
Erin

I think our readers are getting restless :)

Okay, sorry for waiting until late to post an update on the bronchoscopy. Aidan did well going to sleep and they only had to stick him twice to get an IV started. The doctor let our nurse stay and observe the procedure, so she got to stay with Aidan the whole time, which made me feel better.

The doctor said that everything looks great. Aidan's adenoids are a little swollen but he said it wasn't anything to worry about right now. His vocal cords look great. His upper airway is clear as is the rest of his trachea. They were able to take the trach tube out to see if there was any collapse and there wasn't. So, everything looks really good and we'll have an appointment set up with an ENT to get Aidan the PMV.

They haven't called to set that appointment up yet, but we should hear something tomorrow. While we were at Levine we went down to the rehab floor to say hi to the therapists and nurses that took care of Aidan while we were there. They were all happy to see him and kept going on about how big he's gotten.

So, there... I hope everyone is pleased with the update. :P

We've got the golf tournament rescheduled for August 9th. Please pray that we get more players to register. We're lowering the entry fee to hopefully draw in more people. I don't know... I'm looking at what our costs are and, boy, I wish we were getting the course's cut of the deal. We've made the registration form so that it can be filled out and emailed to us or faxed instead of waiting on snail-mail. I'm thinking of other things to do to raise funds as well. We're considering auctions or raffles. I think all of which can be accomplished online.

Well, The rest of the week is pretty quiet. We just have some hyperbaric treatments and then I'm going to try to spend the weekend gathering and pricing items for a yard sale.

Thank you all for your prayers for Aidan. We greatly appreciate all of your love and support.

Erin
p.s. I was trying to be funny with my sarcasm. I'm so grateful to those of you read this blog or check it every day to see if there is news about Aidan. He's a little heartbreaker, I'll tell you. Even in cyberspace he's got the ladies wrapped around his little finger.

swallow study results

Aidan's study was this afternoon. The speech therapist met us at the hospital so that she could get the results since we are going to be transitioning to a different therapy group next week. They gave Aidan little tastes of applesauce and a honey thickened liquid with barium added so they could see it on the x-rays.

Aidan is swallowing, but he is also aspirating small amounts and he's not coughing in response to the substance being in his trachea instead of the esophagus. He only coughs once the food gets past the trach tube.

This wasn't the news I was hoping for, but we'll continue to work on it. His swallow reflex is a little slow, but he is able to swallow his saliva and coughs well enough to handle his secretions. The speech therapist at the hospital suggested using a "vital stem". It is like a tens unit and delivers an electrical current to help strengthen the muscles that help Aidan swallow.

We've been looking at getting a biomodulator that other parents of near drowns are using. I was told that Medicaid would possibly pay for one, so we are going to look into that soon. Otherwise the unit is about $4000 and there is a weekend long workshop on how to use it, that I would have to go to (out of state). It's worth considering if it will help Aidan get better.

Well, I just wanted to let you all know how the study went. The bronchoscopy is Wednesday morning, so I'll definitely post after that.

Please pray that we get some good results back on Wednesday following the bronch. Pray that Aidan gets a stronger swallow and cough reflex. Thank you everyone!

~Erin

Just a few more pictures

Here are a few more pictures. This one is of Evan (Aidan's little brother) and Uncle Matt (my baby brother) at the party yesterday. Everyone says that Evan looks like my brother when he was little.







This is Evan, taken a month or so ago when we were visiting my Mamaw and Papaw. I just love the look on his face. :)




This is another one of Aidan from yesterday at the graduation party. Those are his new shades. How cute is that? He would have never kept those on before the accident.

pictures

These are a few of the pictures my mom got of Aidan yesterday. I love the first one. It looks like he's smiling in it. He really liked the puppy. Oh, I forgot to mention that my mom cut Aidan's hair Friday night. So he's got his short summer hair cut, just in time for the 100 degree sweltering heat.

geez, it's hot!

We just got back from my cousin's graduation party. It was SO HOT! We all spent the entire party fanning Aidan to keep him cool. He ended up going to sleep in the stroller.
(this is the cake I made for the party)

One of my cousins got a little tiny chihuahua puppy and we put her up on Aidan's chest so he could "pet" her. His eyes got really big, especially when the puppy gave him kisses. My mom got a couple of pictures so I'll upload them when she emails them to me.

Evan went with my brother and his girlfriend to her step-brother's graduation. They wanted to take him since her niece and nephew would be there and Evan could play with them. He likes meeting new people, so he should be good.

Well, I hope you all are keeping cool. I think it's a good excuse to take a nap. :) Have a good weekend!

swallow study

Aidan has a swallow study scheduled for Monday afternoon. They are checking to make sure he is actually swallowing instead of aspirating food into his lungs. We have to do this study before we can start trying to give him food by mouth again.

The bronchoscopy is scheduled for Wednesday morning as well. Just thought I'd remind everyone of that.

Please say a prayer that both of these tests/procedures go well and that we get good results.

Aidan is doing well. We got a new formula for him that is not milk based and he seems to be doing much better on it. It is a pureed food formula with juice and fiber added to it. We still add a little cereal and extra fruit or veggies to it, but in just a few days we've seen a big difference in his temperment.

We're going to my cousin's graduation party this afternoon. I made the cake for the party. It's a a park, so I'm hoping that Aidan likes being outside for a while. Hopefully it won't be too hot for us out there.

Thanks everyone!
Erin

Golf Tournament Update 2

Due to the lack of response (only 2 entries received as of today), the decision has been made to postpone the golf tournament until sometime next month. I'll visit with the Tournament Organizer at Rocky River Golf Club next week and get a new date established ASAP. Watch the tournament website for more information.

I appreciate everyone's patience and consideration while we work on reorganizing things.

-- Russell

Golf Tournament Update

As of today, we have received a whopping one entry. There are a few other verbal commits (4-6 teams), but we hope to get more in the mail tomorrow.

I took the opportunity to call the golf course to see if I can get some extra time since response has been so bad/slow. They allowed me to give a final number for the tournament on Monday (6/9); however, I have to have a final number for food by tomorrow.

Therefore, if you are thinking about entering and want to eat at the clubhouse after the tournament is over, please email golfingforaidan at gmail dot com and let us know before 5PM Eastern Time tomorrow so we can give a firm number for dinner. If you don't plan to stay and eat, you have until Monday to get your entries in to us.

All the information is available at http://www.golfingforaidan.com.

THANKS!

-- Russell

update

Today was Aidan's appointment with the eye doctor. He just confirmed what we already knew. Aidan is "cortically blind." What this means is that while Aidan's eyes are perfectly healthy, his brain isn't able to interpret visual information. He responds to light and bright colors and high contrast (ex. black and white designs), but he doesn't follow faces or toys. He can't look at me or anyone else and actually know who or what he is looking at. This is what we already knew because of where the damage is in his brain.

This could be permanent or it could be temporary. Because he is so young and because we are doing everything we can to help his brain heal and repair the damaged areas, we're hoping that the blindness is temporary and that it will improve over time.

I don't know what else to say. It isn't like the doctor told me anything that I didn't already know, but it's the confirmation of that fact that really upsets me. My son can't look at me and know that I'm his mother. It breaks my heart.

Right after the accident while Aidan was still in the coma, I had this vision of Aidan waking up like most of us do from anesthesia, groggy but able to say "momma" and able to move. I just thought he might be weak. I pictured him leaving the PICU to the regular peds unit and us wheeling him around in the little wagon or car like I would see the other parents doing. I thought my child would recover and be normal.

Lets just say that my nice pleasant daydream was squashed. It became apparent that I was horribly naive about the extent or seriousness of Aidan's accident. And then again, maybe that isn't the case. I just wanted to have hope that my baby was going to wake up and be the same little boy, that the whole gut wrenching experience was nothing more than a nightmare. So, maybe that explains why I'm so depressed.

I wake up every day and I wish that I could go back and have my old life back. I pretend that Aidan is going to wake up from sleeping in his little car bed and come running in our room and climb up in the bed with me and snuggle. My faith is wavering. I want to put this all in God's hands, I want to just let it all go and move on, but I can't. I can't move on. I'm lost. I don't know if I'm doing the right things to help Aidan. I've been thrown into a world that I knew nothing of before this accident.

Oh, well.... enough of the depressing rambling. Aidan is fine. He was a little irritable today, but he calmed down this evening and was really sleepy.

On the golf tournament front, we don't have any registration forms in. We've had some people say they are going to be playing, but nothing in writing. I have a feeling this whole thing is going to be a flop, and I'm afraid it's going to end up costing us in the end. It's pretty disappointing. I'm hoping that we'll get some forms in the mail tomorrow and Friday, although Friday is our deadline and we have to tell the golf course how many players we have.

Please say a prayer that we have a good turnout for the tournament. Pray for healing for Aidan and for his sight and for me to find some peace in dealing with all of this.

Thanks!
Erin

MRI results

Aidan's neurologist called this morning to give us the results of his MRI. He said that he was pleased to see that there was no further damage in the areas of infarction/stroke. The basal ganglia area, he said, was preserved. He also made the statement that had Aidan not started receiving hyperbaric treatments, it would be a completely different MRI. Whomever reviewed the films before our neurologist said that there were some areas of scarring in those areas where he had the strokes, but Dr. C didn't see them himself. I guess it's just a difference of interpretation.

On the not so great side, there was a little more atrophy of the entire brain and the ventricles are enlarged, but there is NOT any swelling, which is usually associated with the enlarged ventricles.

I asked what else we could be doing and if any of this is reversible or if it will improve. He said that we should definitely continue the hyperbarics and increase his ambrotose to 2 pills in the evening instead of one. The ambrotose is a really strong anti-oxidant. Aidan is already on all of the vitamins and anti-oxidants that he has recommended. He did say that it is possible for the brain to heal, and we've already put a halt to further damage or softening of the brain, which is good.

I wanted a miracle, but I'll take this. Yesterday was extremely difficult for me. We didn't have a nurse at all yesterday or last night, but that wasn't what made it difficult. I guess I'm just very depressed. All I could do was look at Aidan and cry yesterday. I miss EVERYTHING that he used to do. I want him back the way he was. I want him to have a future that includes going to school and playing sports or whatever he wants, going to college, getting married, having kids... I want all of that for him. I don't want him to have to depend on people to do everything for him. I want him to be able to run and play like a normal little boy his age. It just sucks... all of it. This shouldn't have happened to Aidan! It shouldn't happen to anyone. It's like being stuck between living and dying. He's trapped.

I'm grateful for the progress Aidan has made. We have the appointment with the neuro-opthalmologist on Wednesday and then next Wednesday, the 11th is the brochoscopy. I will definitely post something after the doctor's appointment Wednesday.

Thank you all for your continued prayers. Please, keep Aidan in your prayers. Pray that we continue to see progress and improvements and that this golf tournament is a success. We really need to have that hyperbaric chamber at home. With gas getting so expensive and reports that it could possibly go up to $5 a gallon, I cringe to think how that is going to impact us taking Aidan to his treatments. We're already going only once per day when he really needs 2 treatments per day because of the gas and the time involved to drive to and from each day.

To anyone who is planning to register for the golf tournament, a note:

PLEASE get your entry forms in by THIS Friday (the 6th), as we have to give a count to the golf course that day. If for some reason you get your entry mailed in and believe it will be late, please email us and let us know that you will be attending, if you be staying for dinner after the tournament, and that you've sent your form. Also, payment for registration has to be in by Friday; we will only accept payment for late entries to the Closest to the Pin and Longest Drive Contests. This is different from what is stated on the registration form.

I cannot stress this enough. We have to pay the golf course for the rounds of golf and for the catering, which is why we need the entries ASAP. We hope to see you all out at the golf course. We'll have Aidan out there during the check-in, so you can meet him then.

Thank you!
Erin

I'm really disappointed

Let me apologize for expressing my anger about the comments I read on the news page about the little boy who nearly drowned in a pool in Phoenix. By no means did I want anyone to start flaming my blog readers.

Our friend, who posted a comment to my post has received "hate mail" because of her comment and I DO NOT condone such behavior. I respect her position, whether I agree with it 100% or not. I used to be one of those people who would wonder how something terrible like a near-drowning could happen and would ask, "where was the parent?" It's something that would come to my mind immediately.

Yes, there are precautions that every parent can make to TRY to keep their children safe, but the fact remains that children can and will do anything to get what they want. They are curious and they are more observant and determined than we give them credit for.

I deleted my post because I don't want to ruffle any more feathers. "S", I'm sorry for the emails that you have received. I do appreciate your opinion and your prayers for Aidan. Please accept my apology.