Just a quick update to let you all know how things are going. We were approved for the highest level of care on CAP-C, so we get to keep 8 hours of nursing care a day. We were so happy about the decision. It makes it so much easier on me during the day, so I can take care of Evan and get stuff done. We no longer have a nurse at night. Aidan has been sleeping pretty well, despite the fact that I think he had gotten his days and nights mixed up. Having a nurse in with him all night even though they usually only had a little lamp on is a lot different than sleeping in the dark. We're still working on it, but it's getting better.
Friday morning, Aidan will have tubes put in his ears and we will be resuming hyperbaric treatments next Monday. This weekend we are moving, so it is going to be really, really crazy for the next few days.
There isn't much news. I did get a smile out of Aidan the other day. I was changing his diaper and kind of jiggled the diaper up under him and he smiled. I bounced the bed a little again and he smiled again. It was so great! We've tried doing things to get a response out of him and nothing seemed to work. He also "shook" his head when the speech therapist put a tongue depressor in his mouth during his vital stim session. It was the same thing he did to the ENT.
We're decreasing the valium gradually, so I'm hoping we will see more and more improvements out of Aidan.
Today during his vital stim session, I had Evan in the lobby so he could play and there was a little boy there that he was playing with. It made me sad because I couldn't help but think of how Aidan and Evan would be playing (and fighting) together now if this hadn't happened. I feel like we're missing so much with him. He should be running around, talking, potty-training, and just driving me nuts like a normal 2 and a half year old should be. Aidan was always so full of life and energy. It's hard to see the sleepy, zoned out little boy he is now sometimes. I just wish we could all wake up from this nightmare and forget about it and move on with our lives as they were. I miss playing trucks with him and watching him chase the dogs around. Evan is exactly like him. It's bittersweet.... I remember Aidan doing all the same things, his body language, his mannerisms. I just want to see the day that my babies can play together.
The boys are going to Care Bears for Halloween. We are going to my grandma's since it is her birthday. I don't think they are ready for trick-or-treating yet, but I might take them by the nursing home where my mom works so they can see the staff and residents. Everyone there has been so supportive and has helped us out a lot since the accident and they haven't seen Aidan since he was a baby.
Well, I hope that everyone has a safe and Happy Halloween!
Thanks for the continued support and prayers.
~Erin
Tuesday, October 28, 2008
Monday, October 20, 2008
a busy week
Last week was so hectic, I apologize for not updating. Aidan had 4 doctors appointments last week. We met with the rehab doctor for a follow-up. He's very limber everywhere except his ankles. He still wants to drop his feet even with wearing the splints (AFO's). We're scheduled to go back in April, a year exactly from the day he came home. We're supposed to continue stretching him and putting him in the stander up to an hour 2x a day. If we can't get his ankles to relax, we'll be doing a botox injection at that visit. I'd rather not have to do the botox, personally. His ankles are better than they were, but they still need some work.
Wednesday, we met with the ENT again to discuss putting tubes in Aidan's ears. Every time he gets an ear infection we have to stop his hyperbaric treatments for a week. He's had 3 ear infections since we started this and before that he'd only had 2 in almost 2 years. So we are scheduled to go in for that surgery on Halloween morning. It will be a quick out-patient procedure. And we can start back with the hyperbaric treatments right away. This will equalize the pressure in his ears without him having to swallow or whatever.
Thursday was our appointments with the neurologist and the endocrinologist. Our neuro said that he's very pleased with how Aidan is doing. Aidan was even trying to follow him with his eyes. We're starting to decrease his valium which is great. I'm hoping that by doing this we'll start to see more voluntary movements and a more alert little boy. He had been on 34mg of valium a day and we're going to try to work down to 20mg per day. He's on enough valium to knock out a normal adult and then some. It'll take us about 7 or 8 weeks to get him weaned down that low. We have to do it slowly so he doesn't go into DTs. I hate to say it but my baby is a drug addict. He's been on so much medication for so long.
As for the endo, she did some bloodwork and asked a lot of questions about family history. She said that if Aidan's weight gain is related to the hypothalamic injury, then there really isn't anything you can do to treat it. However, she thinks that most of his growth is just due to his normal growth. She said that around the age of 2 is when most kids start showing their growth pattern. We'll just have to wait and see what his blood work says. We have a follow-up in December to see how he's doing and talk with the nutritionist again.
So, last week was pretty busy. It was a lot of info to take in. Friday morning I woke up and couldn't even walk. My left knee completely gave out on me and I couldn't bear any weight on it. It was horrible. I couldn't pick up either of the boys, so Russ had to work from home so he could help me out once the nurse left. I went to the doctor and they did an x-ray, but it only showed that I have arthritis. My doctor said it was bursitis and gave me a script for an anti-inflammatory and some pain pills. The next day it was better, go figure. It was the weirdest thing. I've never had something like that happen to me. I knew that I was starting to get arthritis, but it doesn't bother my knees too badly. Anyway....
That's what has been going on. We had a pretty uneventful weekend. I've been trying to clean out the boys old clothes that they've both outgrown. I never would have thought that we had so many boxes of clothes! I never really got rid of anything when I found out that Evan was on the way. Now it's time to get rid of what Evan has outgrown, and I can actually really get rid of it. I'm going to try to list all of the baby stuff on craigslist in the next few weeks, but it's a lot of work, especially when I need to be getting ready to move.
We're moving into the apartment on November 1. We're pretty excited about it. We've gotten just about everything we need. I'm still looking for a dining table and chairs though. Russell's mom is flying out for Thanksgiving, so we're looking forward to that too. It will be good for her to spend time with the boys. They haven't seen her since April. I hate that we're so far away now, and I hated that we were so far away from my family when we were there in OK.
Oh, well. I guess I should go. Evan is into anything and everything he can get his hands on. He's just like Aidan was at this age. I hope that everyone is doing well.
Thanks for the continued prayers and support. We love you all!
Erin
Wednesday, we met with the ENT again to discuss putting tubes in Aidan's ears. Every time he gets an ear infection we have to stop his hyperbaric treatments for a week. He's had 3 ear infections since we started this and before that he'd only had 2 in almost 2 years. So we are scheduled to go in for that surgery on Halloween morning. It will be a quick out-patient procedure. And we can start back with the hyperbaric treatments right away. This will equalize the pressure in his ears without him having to swallow or whatever.
Thursday was our appointments with the neurologist and the endocrinologist. Our neuro said that he's very pleased with how Aidan is doing. Aidan was even trying to follow him with his eyes. We're starting to decrease his valium which is great. I'm hoping that by doing this we'll start to see more voluntary movements and a more alert little boy. He had been on 34mg of valium a day and we're going to try to work down to 20mg per day. He's on enough valium to knock out a normal adult and then some. It'll take us about 7 or 8 weeks to get him weaned down that low. We have to do it slowly so he doesn't go into DTs. I hate to say it but my baby is a drug addict. He's been on so much medication for so long.
As for the endo, she did some bloodwork and asked a lot of questions about family history. She said that if Aidan's weight gain is related to the hypothalamic injury, then there really isn't anything you can do to treat it. However, she thinks that most of his growth is just due to his normal growth. She said that around the age of 2 is when most kids start showing their growth pattern. We'll just have to wait and see what his blood work says. We have a follow-up in December to see how he's doing and talk with the nutritionist again.
So, last week was pretty busy. It was a lot of info to take in. Friday morning I woke up and couldn't even walk. My left knee completely gave out on me and I couldn't bear any weight on it. It was horrible. I couldn't pick up either of the boys, so Russ had to work from home so he could help me out once the nurse left. I went to the doctor and they did an x-ray, but it only showed that I have arthritis. My doctor said it was bursitis and gave me a script for an anti-inflammatory and some pain pills. The next day it was better, go figure. It was the weirdest thing. I've never had something like that happen to me. I knew that I was starting to get arthritis, but it doesn't bother my knees too badly. Anyway....
That's what has been going on. We had a pretty uneventful weekend. I've been trying to clean out the boys old clothes that they've both outgrown. I never would have thought that we had so many boxes of clothes! I never really got rid of anything when I found out that Evan was on the way. Now it's time to get rid of what Evan has outgrown, and I can actually really get rid of it. I'm going to try to list all of the baby stuff on craigslist in the next few weeks, but it's a lot of work, especially when I need to be getting ready to move.
We're moving into the apartment on November 1. We're pretty excited about it. We've gotten just about everything we need. I'm still looking for a dining table and chairs though. Russell's mom is flying out for Thanksgiving, so we're looking forward to that too. It will be good for her to spend time with the boys. They haven't seen her since April. I hate that we're so far away now, and I hated that we were so far away from my family when we were there in OK.
Oh, well. I guess I should go. Evan is into anything and everything he can get his hands on. He's just like Aidan was at this age. I hope that everyone is doing well.
Thanks for the continued prayers and support. We love you all!
Erin
Saturday, October 11, 2008
a few updates
Well, we have some good news regarding our nursing coverage. They are going to continue our private duty nursing hours until we get a final decision on CAP-C. I don't even know how to begin explaining the CAP-C program to you all, but it is a Medicaid program that we had to apply for. There are 3 or 4 tiers of coverage with a monthly budget with which your supplies and equipment and other services are covered under. It's confusing to say the least. The only good thing I can see about the program is that only Aidan's income (nothing since he's 2) is considered to qualify for the program. All other programs would use mine and Russell's income to base their decisions on.
I know that it is really soon since Bear passed away, but we found a labradoodle for Aidan. Her name is Gracie and she is a year and a half old. She was being given away by a couple who's son and family were moving in and they just didn't have the room or time to give her. We really lucked out. Gracie is the most well behaved dog I have ever been around. We took Aidan to meet her and she didn't bark, she didn't growl, or jump. She came over when I got down on the floor with Aidan, sniffed at him, sat down and licked his face. At that moment, I knew that we had to have this dog. We picked her up this afternoon and I took her to the groomers because I know nothing about long haired dogs or poodle-mix breeds. This is a picture of her after we got home from getting her groomed and trimmed. Everyone who met her at the pet store commented on how well behaved she was. I think she is going to make an awesome therapy dog for Aidan.
We only have a few more weeks until we move into our new apartment. We found some great deals on furniture through craigslist and ebay of all places. Another really great thing that is going on is that some people on Russell's Oklahoma State messageboard who we used to go to tailgates with are arranging a fundraiser for Aidan. I can't even begin to say how thankful I am to everyone who has donated toward Aidan's care and treatments. With the cost of gas and wear and tear on our car taking him to and from hyperbaric treatments, your generosity has been a huge blessing to us. We are saving some for Aidan's future needs as he improves and will hopefully need more mobility items (like a walker, we hope). We are nowhere near that point right now, but we are all hopeful and are praying that Aidan will improve to a point that he will be walking before we know it.
Back to the fundraiser- they are going to be having their usual tailgate party at OSU's homecoming game against Baylor. They are going to auction or raffle off a football autographed by the entire OSU team and we have sent them a bunch of our orange and green bracelets to sell. Maybe they can convince some of the Baylor fans to buy a braclet (we hope). So far, that's all I really know about, but I think they are trying to arrange a few other things. All I can say is that I'm flabbergasted. The amount of support and love that we have recieved from friends and complete strangers most of the time is astounding.
I took a few pictures of Russ and Aidan this evening for them to use for the fundraiser so I thought I'd share them here too... Hope you like them. My little boy has grown so much! I'll post more tomorrow.
Thanks everyone!
~Erin
I know that it is really soon since Bear passed away, but we found a labradoodle for Aidan. Her name is Gracie and she is a year and a half old. She was being given away by a couple who's son and family were moving in and they just didn't have the room or time to give her. We really lucked out. Gracie is the most well behaved dog I have ever been around. We took Aidan to meet her and she didn't bark, she didn't growl, or jump. She came over when I got down on the floor with Aidan, sniffed at him, sat down and licked his face. At that moment, I knew that we had to have this dog. We picked her up this afternoon and I took her to the groomers because I know nothing about long haired dogs or poodle-mix breeds. This is a picture of her after we got home from getting her groomed and trimmed. Everyone who met her at the pet store commented on how well behaved she was. I think she is going to make an awesome therapy dog for Aidan.
We only have a few more weeks until we move into our new apartment. We found some great deals on furniture through craigslist and ebay of all places. Another really great thing that is going on is that some people on Russell's Oklahoma State messageboard who we used to go to tailgates with are arranging a fundraiser for Aidan. I can't even begin to say how thankful I am to everyone who has donated toward Aidan's care and treatments. With the cost of gas and wear and tear on our car taking him to and from hyperbaric treatments, your generosity has been a huge blessing to us. We are saving some for Aidan's future needs as he improves and will hopefully need more mobility items (like a walker, we hope). We are nowhere near that point right now, but we are all hopeful and are praying that Aidan will improve to a point that he will be walking before we know it.
Back to the fundraiser- they are going to be having their usual tailgate party at OSU's homecoming game against Baylor. They are going to auction or raffle off a football autographed by the entire OSU team and we have sent them a bunch of our orange and green bracelets to sell. Maybe they can convince some of the Baylor fans to buy a braclet (we hope). So far, that's all I really know about, but I think they are trying to arrange a few other things. All I can say is that I'm flabbergasted. The amount of support and love that we have recieved from friends and complete strangers most of the time is astounding.
I took a few pictures of Russ and Aidan this evening for them to use for the fundraiser so I thought I'd share them here too... Hope you like them. My little boy has grown so much! I'll post more tomorrow.
Thanks everyone!
~Erin
Tuesday, October 7, 2008
What a week ...
It's been an interesting week or so. Aidan was supposed to start back with his hyperbaric treatments last Wednesday. We took him for the treatment on Wednesday and he seemed fine. The next day he was just irritable and fussy, and having storms off and on all day. He also started throwing up. Friday we took him and Evan both to the doctor. They both have ear infections. Evan's was just getting bad, but Aidan had apparently had one and it caused his eardrum to perforate so the infection could drain out. His doctor said that it was only in his right ear, but I looked in his ear yesterday and the other one seems to look a little infected now.
Both boys are on antibiotics and we're dealing with all the lovely effects of Aidan being on Augmentin (i.e. terrible diarrhea and infections around his g-tube). Aidan is still having bouts of vomiting. I'm not really sure what is causing it other than sinus drainage and the mucus on his stomach is causing the vomiting. He just acts like he doesn't feel good. I was able to lay with him on the couch last night and sing to him when he was kind of whiny and it seemed to help soothe him. I just hate that there isn't much I can do for him. I just pray he keeps his formula and medicine down each time we feed him.
For some other news, good and bad- We've put a deposit down on an apartment and we're supposed to move November 1st. The apartment is fully handicap accessible and both the boys will have their own room. I'm excited about having our own space again and I'm sure my mom is glad that she's getting her house back and will be rid of the toys and clutter.
The bad news- our chocolate lab, Bear, was hit last Monday night by a car. He was out running around the yard and we didn't realize he'd gone down to the road (we have a 2 acre yard). It was almost dark and the couple driving couldn't see him. Bear's heart stopped beating once I got down to the road, but had started again. Russell rushed him to the emergency vet but he was gone when he got there. The vet tried to resuscitate him several times, but they were never able to get a response.
Bear was my Valentine's Day present from Russell almost 6 years ago. He was a very lovable and loyal dog. Russell and I were looking into having Bear trained to be Aidan's therapy dog just a few days before he was hit. I've had Bear longer than I've ever had any other dog and we will miss him a lot. Here are a few pictures of him. I had some with him and Aidan together when Aidan was a baby, but I couldn't locate them.
Thank you all for your unfailing support, love and prayers. We appreciate them so very much. I'd like to ask that you pray for a friend of mine who's husband has cystic fibrosis. He is not doing well and his doctors have given him 2-4 years if he doesn't have a lung transplant. Please pray that he is able to get on the transplant list and get this surgery soon. They just had a little boy in July. I'd appreciate it if you could say a prayer for them. Thanks!
Both boys are on antibiotics and we're dealing with all the lovely effects of Aidan being on Augmentin (i.e. terrible diarrhea and infections around his g-tube). Aidan is still having bouts of vomiting. I'm not really sure what is causing it other than sinus drainage and the mucus on his stomach is causing the vomiting. He just acts like he doesn't feel good. I was able to lay with him on the couch last night and sing to him when he was kind of whiny and it seemed to help soothe him. I just hate that there isn't much I can do for him. I just pray he keeps his formula and medicine down each time we feed him.
For some other news, good and bad- We've put a deposit down on an apartment and we're supposed to move November 1st. The apartment is fully handicap accessible and both the boys will have their own room. I'm excited about having our own space again and I'm sure my mom is glad that she's getting her house back and will be rid of the toys and clutter.
The bad news- our chocolate lab, Bear, was hit last Monday night by a car. He was out running around the yard and we didn't realize he'd gone down to the road (we have a 2 acre yard). It was almost dark and the couple driving couldn't see him. Bear's heart stopped beating once I got down to the road, but had started again. Russell rushed him to the emergency vet but he was gone when he got there. The vet tried to resuscitate him several times, but they were never able to get a response.
Bear was my Valentine's Day present from Russell almost 6 years ago. He was a very lovable and loyal dog. Russell and I were looking into having Bear trained to be Aidan's therapy dog just a few days before he was hit. I've had Bear longer than I've ever had any other dog and we will miss him a lot. Here are a few pictures of him. I had some with him and Aidan together when Aidan was a baby, but I couldn't locate them.
Thank you all for your unfailing support, love and prayers. We appreciate them so very much. I'd like to ask that you pray for a friend of mine who's husband has cystic fibrosis. He is not doing well and his doctors have given him 2-4 years if he doesn't have a lung transplant. Please pray that he is able to get on the transplant list and get this surgery soon. They just had a little boy in July. I'd appreciate it if you could say a prayer for them. Thanks!
Subscribe to:
Posts (Atom)