Wedding pictures

Here is a picture of our family from the wedding.

If you would like to view the online Wedding albums, we had two photographers (Carrie used Walgreens and Janelle used CVS), just send me a message with your email address and I can send you a link. I was going to post the link on the blog, but figured I probably shouldn't do it that way. You could also join me on Facebook. I only add family and friends (or people that I know), so please also send me a message with the request.

I'm adding, a picture of Evan as ring bearer, one with Evan and Jordan, one with Evan and Joe, and one with Evan and me. He was so cute! He always is. He can be quite mischevious at times, though.

Evan's Ear

Evan's ear has healed tremendously since surgery, at least on the outside. I guess the inside is still an open sore according to the dr. and still no swimming. He has to have surgery done a second time in January to complete the reconstruction of his ear canal. He might not have had to have a second surgery, but all the gauze had fallen out a couple of weeks ago.

He still needs 5 drops in his ear 2 times a day, and in all the chaos of the wedding and packing for our honeymoon trip I misplaced the drops and we went through this horrible hassle between the dr, the pharmacy, and insurance to try to get a prescription filled early because I guess it hadn't been 20 days yet and insurance was refusing to refill. The dr. gave us a new prescription and I had already left for the airport, so my sister hammered it out with the pharmacies and got them to make it a 10 day supply instead of a 20 day supply so he could have his drops. In the meantime, he was out of drops for 2 days... geez. Then I was talking to my mom yesterday and she said that the old bottle of drops were on the shelf in the bathroom. Ok. That is exactly where I kept them. And I swore up and down that I had looked there a million times before and they weren't there. Hmmm. It's like they got up and walked away and then were put back there again. How odd.

It sucks that he won't be able to go swimming anytime soon, because we are getting a YMCA membership when I return home from my honeymoon and I will have to be creative for a while yet about swimming. He absolutely LOVES swimming!! Oh well, anyway, we will deal with it. He can play the games in the Exceroom at least. He thought it looked so fun when we did our tour.

Joe and I are on our honeymoon in sunny Florida. Our cruise leaves tomorrow out of Tampa. We are so excited! I can't even sleep!!

Our wedding was so beautiful. Evan was so cute, well, of course, all the kiddos were super cute. Nate was going to walk down the aisle holding Evan's hand and carrying little Alli, but he had a bad knee from a car accident he had been in the week before and the dr advised him not to walk on it much... so we had Nate stand up front with Joe and Evan was to walk in slowly in front of me and then go sit with grandma and grandpa. Well, he had done so well practicing, but when the time came... he ran down the isle as fast as he could. I had just assumed he had sat with grandma, but when my dad walked me down the isle... there was Evan, standing up there with Jordan. He stood up there the whole time. But he was very good. When he got a little fidgety, he just sat down for a little while. Jordan and Evan were so cute up there. And Emma looked like such a beautiful young lady, and she's only 9... she's definately going to be a heartbreaker when she gets older. Janelle caught a couple of pictures of Nate with a smile on his face as he watched the ceremony. That's so neat!

I LOVE my new family! It's crazy, I went from being a single mom and a family of 3 to a family of 7 in one day. How crazy is that?

Ear Surgery pics

The first picture is of Evan in the shirt he's wearing on Dec. 5th, for our wedding. Then I posted a new picture of him this morning and some pictures of Evan's Ear after surgery. The first one was taken today and the other two were taken on Saturday. I think it looks better today. It's healing!!

Saturday morning after surgery

I didn't sleep much on Friday night, just kept waking up to check on Evan. I was worried that he would have some pain, or his ear would be bleeding, or that he would vomit again.

When I went over to his bed at 4 am, he was wide awake. He said, “I’m better now,” then he got all excited and said “Look at my bear!” At that moment, I knew he was back to normal. I got him up, gave him applesauce and medicine, and looked at his ear. The gauze was coming loose, a big chunk was hanging out. I tried to push it back in with a q tip, but it seemed like there was just too much of it. I then called the hospital to see what I should do. It was over an hour before I got to talk to the on call ENT physician. She said that if it was too much to push back in, I could just cut off the end and stick the rest back in. I fixed him up and put him back to bed.

I stayed up and watched him fall back asleap. At 8AM, he was well rested and had ALL of his energy back. We had applesauce, then a little while later, some yogurt, and soup a little while after that.

Recovery from Surgery

Evan was so groggy, he kept drifting in and out of sleep, and then occassionally vomiting (well, actually... dry heaving). He hadn't had anything to eat, except for the IV and the medicines.

The nurses were debating whether to keep him overnight or have him go home. Andrea came to drop Jordan off at 5:30 or so, just as they were moving us from the surgery area to a room downstairs in of of the Urgent Care, Emergency Room wing. A nurse upstairs had said it would be ok to have Jordan come and stay with us, but in the new area... the nurses wouldn't allow him to stay.

So at about 6:00, Evan's Grandma stayed with him and I took Jordan home to get him ready for the sleepover at church. We packed his bag, checked with my friend Katie to see how Alli was doing, and then stopped at the grocery store to pick up soft foods that Evan could eat (applesauce, yogurt, soup, a lunchable for Jordan...). Joe got off work early and went to pick up Alli. I dropped off the food at home, said hi to Alli and Joe, and then dropped Jordan off at church. Then I was back to the hospital to check on Evan.

When I got there, they were preparing to release him. He vomited again, so I thought they would have to keep him, but they continued to prepare him for discharge. The Dr. had said that they should keep him overnight, if he vomited again. My mom had told the nurses that I wouldn't be able to stay the night (and wait for discharge sometime in the morning) because I had to pick up Jordan, and take care of Alli, and Joe had to work. The nurses in this area seemed more intent on getting us out of there, then on helping Evan. The nurse didn't seem to sure of herself. I wondered if she was new. She said that movement might make him vomit more, so she gave us a bag to use for the walk to the car. We were wondering if we couuld carry him, then I asked for a wheelchair. I think that's usually standard procedure, but she didn't even think of it. I pulled the car around, while the nurse and my mom weeled Evan to the ER Entrance door. My mom drove my car, and I sat in the back seat with Evan, just in case he got sick again. Thankfully, he didnt. I was so squished though, sitting in between Alli's car seat and Evan's car seat. I didn't want to have to reinstall Alli's car seat later, so I just left it.

We got Evan home. I carried him up the 3 flights of stairs to the apt., so that the motion would not cause him to vomit again. We gave him applesauce and some sprite and got his bed all ready and put him to bed. Through all of this, he had been very brave. I was so proud of him.

Joe gave my mom a ride back to the hospital to pick up her car, so she could drive home, while I stayed home with Evan and Alli (who had been sleeping since before I got home). I got together anything I might have needed in case Evan got sick during the night, or in case he had any pain, or needed my attention. Then after Joe got back home, I attempted to sleep.

Surgery on Left Ear

The surgery was done on Friday. It was such a LONG day. We had to be at the hospital at 10 am to register and then wait in the lobby on 2nd floor until they were ready. Then they called us back to a room the size of our walk in closet (may not have been that small, but it felt like it). They just did height, weight (45 lbs now), and the normal questionaire stuff. They talked to Evan and us about the surgery. He was a little apprehensive. When it was time to go to the surgery room, we walked down there with him. We told him, he would lay down and sleep. He didn't want to go with the nurse, so she had to pick him up. Then we had to go back to the lobby to wait some more. The surgery was sposed to take 1 to 1 1/2 hour. After 2 hours, I was getting worried, so I asked the lady at the registration desk. The nurse told her that she thought that they were getting close to finishing up.

After 3 hours, the dr called us into a small room, about the size of a normal closet (not kidding). He explained why it took 3 hours. He said it was interesting a few times, challenging a few times, and he called it the "case of the year", a few times. He did not find what he was expecting.

I'm going to try to explain it, but I'm not a dr., especailly not an ENT surgeon, so I didn't understand a lot of what he said. From what I did understand... He went into the ear canal. There was this bone taking up 2/3 of the ear canal and ear wax taking up the other 1/3. He thought he would have to drill through the bone, or chip away at it. As he started to poke at it, it broke off. Mission accomplished there. Then he went into the ear canal to see what was going on in there. Evan has all the parts, and they seem to all be functioning... but they weren't in the right places and some things were crisscrossed that weren't sposed to be and it was just a little bit odd. So he had to move things so they would be alligned with the ear canal and do a little bit of restructuring. The Dr. was very surprised and proud. All in all, surgery went well.

The Dr. said that with the parts not exactly in the correct locations and not alligned normally, it'll be interesting to see if everything is really working properly. We are hopefull that he will have 100% hearing restored in that ear after his 2 week check up. At that appointment, the dr. will take out the excess gauz, and then we can re check his hearing in the left ear.

The Dr. left the room, and we had to go back to the lobby, until they called us back to Evan's room in the "Same Day Surgery" area. They finally called us back after another hour.

Hospital time is so slow. I had thought I'd be out of there by 3-4 pm, but the surgery wasn't even done until 3, and they didn't call us back until 4.

When they called us back, he was kind of out of it. He was very groggy from the extra anesthesia and had vomited a few times already. He looked at us and then went back to sleep. I tried to find cartoons for him to watch, but the tv had limited channels, and he didn't seem to be all that interested in watching anything anyway.

Before the surgery, they had dressed up Evan's bear. The bear was wearing a surgical mask, hat, and shoes. It was so cute!

The Dr. had checked in on Evan a few times, he instructed us and the nurses to push the gauze back in the ear canal if it began to come loose. The nurse poked at it a couple of times with a cotton ball, but was scared to touch it. Told me I could use a pen when we got home. The thought of using a pen was a little scary, didn't seem too sterile either.

More about recovery later...

Upcoming surgery.

W have surgery scheduled for Nov. 6th. The ENT Dr. is very positive that it's just going to be a simple surgery where they go into the ear canal and make a little cut in the skin, like a skin graft, and then remove extra material or tighten the skin around the bone to open up the ear canal so that he will be able to hear without a hearing aid. We meet with the pediatritian tomorrow morning to make sure all is well before surgery. I'll keey ya'll posted.

Hmmmm... It's been a year. I have been so bad at this. Well, we are doing good. We have had a lot of changes in the last year. Our family has changed so much! Evan is now a proud big brother to his little sister Alli (4 months old), and is doing really good most days. We still have our difficult days and new challenges arrise on a day to day, week to week basis. We skipped the conference this year with all the changes in our life, and our much larger family size, it just didn't work to go this year. I was thinking it'd be good to go as a family next year, but now I was told that it won't be covered as a reimbursement next year... so we might not be able to afford it. I really missed being able to see all the wonderful families I met last summer, I'll have to get better about emailing and chating with them all... to keep in touch. It gets so busy and crazy sometimes. The conference would be very beneficial to us all though. It's tough sometimes, and when you add a stepdad and stepsiblings to the mix, it shakes it up a bit.

Well lets see, I'll try to recap Evan's growth in the last year... He is potty trained finally. We don't take Miralax all the time because that seemed take it to the opposite extreme. He always goes a ton, but its not so bad if we make him sit on the potty and have a BM go at least 1 x every day. He has had accidents, a couple in the last couple of weeks. It gets frustrating, but we deal with it.

He has an orange cast. He broke his arm (actually, his wrist) while playing at the neighbors house a couple of weeks ago. He is doing well with it, although we have to remind him not to use it as a toy or weapon. He seems to think it's fun to hit things with it. He still uses his fingers to write and uses it for most things.

He went to San Antonio with grandma to be involved in a Chromosome 18 research study this past August. It was a really good opportunity and I'm very thankful that he was able to go. They did some testing with growth hormome, so I'm anxious to see the results of that.

He just started Kindergarten, and so far, so good. We have his IEP meeting in October, so I should get an update on how things are really going, from his therapists and teachers and aides, so that should be a bit more informative. So far I have his teacher on email, so we keep each other posted on dr apts. and daily updates.

We've been having some behavior stuff again, tantrums and outbursts... and not always listening... so we are having going to see someone at Southeast next week for some help with that. And there is a support group for Family Voices parents starting in Oct that Joe and I are going to attend. That should be helpful! It seems like we take steps forward and steps back, sometimes when we think we are past someting... then we see backtracking, when we had already seen progress. I don't know, it's very frustrating.

We have respite care now, so at least we can get some time to take a break, when things get to be just too much. It has been very, very helpful!!

That's all for now... but I'll have to write more later... it's been a long and busy year.