I'm glad I had the time to post some more current pics. If I have time I will post some camping/4th of July pics too.
Ava had a good day today, she was a little bit fussy and is still on pain meds and sleeping a ton of the day. We still don't have our surgery set up so not sure which day it will fall on if she is cleared of any infection this week.
They took blood today and checked her CSF (cerebrospinal fluid) and so far so good!! There is no sign of infection yet (she will be checked the next 2-3 days as well). Her sodium level is a little off now that the shunted fluid is being removed instead of drained into her tummy like when the shunt is internalized. Her little wrists are all swollen and puffy.
All in all, the doctors today thought that Ava seemed to be progressing well and they weren't expressing any additional concerns. We'll keep you posted...
Monday, July 13, 2009
Sunday, July 12, 2009
Been a long time...
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:)
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:)
Thursday, November 6, 2008
Here are our little Pumpkin's dressed up for Halloween. We went to The Pumpkin walk the day before in East Lansing so Nicholas could experience Trick-or-Treating. On Halloween day, we went to Happy Night at Cedar Street Church as an alternative since Eddie was coaching the playoff game that night. I thought that would be easier to do by myself...I was wrong, but that's okay:) Thanks Tammy, Dave, and everyone else from church who helped me watch over Nicholas and Ava. The close up picture is of how Ava's face is doing since off her steroids for the past month. There is a little regrowth, which worries me, but her doctor's aren't concerned at this point (I just sent them some pictures yesterday). Ava is doing really well right now. She is slowly getting stronger and better at holding her head and neck up, maybe she just needed the extra energy from baby food(hehe). She is getting daily PT from mommy and daddy and biweekly from Early On, they will be coming weekly after December though. Actually, Becky will be here to work with her again this afternoon! She is the one who loaned me that cute little blue Bumbo chair for us to practice sitting up.
So the pictures that are dated wrong from me changing batteries are from the week leading up to Halloween. These children's Grandma's are looking particularly happy and "Beauteous" in these pictures, aren't they? Speaking of Grandma's, Ava and Nicholas just visited both of their Great Grandma's in the last 2 weeks too! Our little sleeping beauty is in her bed showing off how she sleeps through most nights:) Now, if only Nicholas would sleep in longer we would have it made!
Since last time...
There has been a lot going on in the Saade family since last time I posted. For one, it has changed from summer to fall, though you wouldn't know it today what with sunny 70 degree weather. Ava stopped her treatment with steroids at the very end of September and her doctors are fairly sure she should not have too much more trouble with her hemangioma. Remember they slow down in growth near 12 months old. We've spent lots of Friday's at Sexton football games supporting Daddy in his endeavors. The Big Reds made it to playoffs and played well against Dewitt, losing by one point:( We also went to a couple MSU games together, just trying for any alone time together that we are offered day care for! Our chunky 16 pound Ava turned 6 months old the day that Obama was elected into office.
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