Hi everyone! It's been a while, I see that our last post was about the same time as I accepted my current job. We're sorry about that. The family has been through a lot since then.
We are looking for a house right now since I am back at work and we sold our first house in preparation for the worst with Ava. I have been at my job since November 24th, please pray for us about me keeping my job. I am not covered by the FMLA until my 1 year anniversary and have already missed a lot of days, almost all of the days that were originally allocated to me...Eddie has taken off quite a bit as well.
Shortly after I started we realized that Nicholas has a very bad peanut allergy and he had two really bad experiences with that within 2 weeks. He also has lots of outdoor allergies/asthma issues like Mom and Dad. Since we have gotten tubes in his ears for ear infections and he is taking meds for allergies/asthma he has been great and only has been sick once since Ava has joined us. This is a tremendous blessing since we are dealing with so much time off for her.
About a month after I started at my job, Ava ended up getting a shunt placed in her brain which is a length of tubing that takes the fluid that collects in her brain that isn't supposed to be there and puts it into her abdomen so she can get rid of it. In June she had to have that shunt explored for a malfunction after noticing some symptoms that she was having. Turns out there was a kink in the tubing and it created some other problems as well so these pieces were replaced and she was sent home. July 6th, she had tubes placed in her ears since here ear is so tiny and makes it hard for Dr.'s to see if she has an infection. (She had 3 really bad ear infections by the time she was 1). This week, she has a lot more of a fluid collection that we could see externally and her Neurosurgeon planned to do another revision Monday July 13th but yesterday (Saturday night) she sprung a leak. There was a lot of pressure from that fluid collection and some of the Cerebrospinal Fluid squirted right out of her head from a pinpoint size area. Actually a lot leaked out. Because of the infection risk we had to get her right in to the hospital last night.
She had surgery this morning to take out her shunt now that it has been exposed to the outside world. In this case, we all have to treat her as if she has an infection. Her shunt tubing is outside of her now for a few days while they check for infection over the course of the next few days. If we are for sure clear of infection, then her new shunt will be placed either Thurday or Friday if all goes as planned. If there is an infection, she will get a full course of antibiotics and have her shunt placed after another week passes. My mom is staying with Ava during the days while I commute to work and I will stay the nights at U of M. Eddie is gonna be mostly in Lansing with Nicholas and his parents are also helping out with Nicholas.
For those of you who don't get to hear about or see Ava much, she is doing really good aside from all of this. She is developing really well and loves to be around people and get attention. She is still seeing a therapist who works with her on development of different skills and is progressing nicely.
We really are hoping that she doesn't get an infection and we can go home Friday or Saturday. Please pray for us, we have a lot going on and always appreciate it. Thanks, hopefully now that I have a little more time on my hands when I am out here, I can update this site a little better. I will see about getting some current pics too, looking through these, we realized that these pictures don't even resemble her anymore:)
Sunday, July 12, 2009
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3 comments:
I just discovered your blog and didn't realize how much you have been going through. You and your precious family are in my prayers.
Omg! Your family is really going through trials and tribulation, but we are praying for you and your family. I can't understand how it is to go through this with a child. I pray that Ava continues to do well and you and your family keep your head up. I love you all.
Tamesha Stewart
Hi,
I'm Cristina, mom to 3 yr old Elyse who was diagnosed with PHACE when she was 4 weeks old.
Sorry to read that you've guys have gone through a lot with both kids.
I also wanted to invite you to a private group for PHACE parents & families...
http://phacesyndromecommunity.activeboard.com
i wouldn't be surprised if other PHACE moms have invited you. The group is amazing. Lots of support.
Take care!
Cristina & Elyse
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