Eye appointment

Hello everybody. I just wanted to post some results we got yesterday about Aven and her vision. As to my understanding she is about 40% blind. There is a 25% chance of improvement, 25% chance of no change and a 50% chance of continued degradation. She didn't track very well either and the docs seem to think that it may be caused by the brain damage she sustained during her early development and delivery. She continues to amaze all of us everyday with the progress she makes. ALSO!! She officially has her first tooth as well. She showed mom by biting her finger, lol. I'll post more as we know more and thanks for everybody's love and support.

--Ethan

A quick update..

Aven has gone 1 week with no seizures!! Also, she has gotten her ears pierced, and looks even more beautiful, which I didn't think was possible.

Isis starts preschool on Tuesday and he is ,"Really excited to play with the kids and get the bad guys."

Trips to the hospital

Last Monday night I was watching TV with Brandy and noticed that Aven was crying and would stop for a few seconds and then start again. Odd, I thought, that she would do this because she hasn't ever done it before. I went to go pick her up and hold her. I noticed that she would go limp for the periods of silence and then regain control over her body after about 2 seconds. She did this two more times and after that Brandy and I put her in her car seat and Aven and mom took a ride to the hospital here in Greeley. In the ER however, they couldn't find anything wrong and sent her home after a few hours.

The next day around 9:30 am, Aven had a physical therapy appointment. He PT saw her doing it again and told Brandy. This time to better explain what was going on, Brandy recorded about 15 seconds of the episodes and then took her to the ER again. This time, with evidence in hand, she was able to show the Docs what Aven had been doing. They examined the video and decided that she needed to be taken to Children's hospital in Denver. I met them both down there and we were taken to an ER room.

Aven was seen by Neurology and the general peds docs. After about 6 hours we were moved into room 842 and we got all settled in. After about an hour in the room the EEG technician came in and hooked Aven up to the machine. The monitored her overnight and through the next morning until she had another episode. Once they were able to capture it on the machine they disconnected her from it. The Neurology docs decided that she has infantile spasms and that they are most common in children from 2 months to 1 year.

The next step was getting her on a medication called ACTH. This is a hormone that is supposed to stop the spasms and encourage normal brain activity. Her brain activity is more of a concern than the spasms at this point because if she develops with abnormal brain activity then she will develop abnormally. Brandy learned how to give Aven her medication, which is administered daily through an injection in the legs. They discharged her on Saturday afternoon and I went down to children's to pick them up.

We had a few small spasms over the weekend but on Monday night her heart rate was very inconsistent and dipped very low. Brandy took Aven to the ER in Greeley and stayed up with her all night. They decided to send Aven to Denver via flight for life so Brandy and I went down in my car and met our baby down there. They preformed an EKG on her heart and didn't see anything that they were concerned about. After talking to Neurology again we were discharged and now we're all back home.... living as normal as possible.

Octo 1

So it's been awhile since the last post, as a co-worker pointed out to me so here is some new information.

Aven has been home for about 3 weeks and is doing great. She is eating about 4 ounces every 4 hours. She appears to be developing at a normal rate and she was seen by a therapist yesterday and everything seemed to be progressing excellent.

Isis is now in the 85th percentile in his height and weight. He still drinks juice all day and loves to drive his power wheels truck. He is very protective of baby sister and loves to tell everybody that it is HIS baby sister and to be careful with her.

Ethan just got his PADI scuba diver certification and is helping with the service desk of student computers for UNC as well as faculty/staff service calls as well.

Brandy has been working from home the past 3 weeks and has enjoyed her time with the kids.

Hope this helps quench some curiosity about the family. Thanks for visiting.

The latest..

Aven has had two room-air oxygen tests so far. This is a test designed to see if she can maintain her oxygen saturation above 80 percent for a period of 40 minutes. They will consider letting her go home with a monitor if she makes it to 30-35 minutes. So far she has only held out for 2 and 3 minutes respectively. Other then her breathing, she is eating the correct amount and has gained enough weigh to come home. It's hard to be patient when today she is 4 months old already and still not home.

Ethan is excited to be going back to school starting next Monday, the 24th. He is taking a lot of classes but still only 12 credit-hours to try and boost his GPA up so he can make it into the business school to start taking classes more specialized for his Computer Information Systems degree. He also has a kidney stone!! Currently he has had it for almost 48 hours. The docs say that the largest stone you can pass is 5 mm and right now his is 4.5mm, lucky huh? He is anxiously awaiting passing it to get on with living w/o being in constant, agonizing pain. No, really it's awful..

Brandy is still working from home on Mondays and Fridays and Isis is loving to go see baby sister with mom whenever the opportunity arises. He sings her songs and loves to hold her. Aven has smiled for everybody but dad btw. We appreciate every body's support and prayers through this long and trying time to get Aven back home with us. Your continued support is a blessing and we appreciate it every day. Thanks again and we'll try to keep this dang thing updated a little bit more frequently!

Update desperatly needed

So we have not updated in a while. Aven is 6lb 9 oz and should be home next week. Ethan is going back to school on the 24th. And I am looking forward to time at home with both kids

Aven is 5 lbs 14 oz