Ava's Journey

It's been another good year!!

2010-01-02T21:57:00.000-08:00

Hi all!!

Hope this finds everyone else doing well. We just past our "Happy New Years" moment and I thought it was more that time for us to update. A few days off from work makes it feel tolerable to get on a computer...LOL. Ava gave us quite a scare back in July. She had to have her whole shunt removed and externalized and was admitted for a week to remove any possibility of infection and re-internalize it. Ever since, she has been doing great! She has now had 4 brain surgeries and this is the first time that we are really confident that it is working the way it is meant to. It has been the best 6 months I can remember. She is happy, healthy, and thriving. Ava is learning all sorts of new things and enjoying her mobility. Shs is able to sit on her butt and scooch all over the house. She is imitating faces, nodding yes and no, and performing things like "pat-a-cake." She is using some sign language and more words. She is saying cheese for pictures, mine, more, hi, bye, mama, dada, baby, and no. I have heard all of these multiple times, but she refuses to say them on command aside from mama and dada. She is a little stubborn that way, which we are more than fine with. She is pointing and showing interest and just started moving her feet around as if to mimick walking when we put her in a standing position. She is rolling over more since she isn't hating tummy time so much. This might not seem like a ton for a girl who is 20 months old, but for us, this is miraculous, and for our own good, not what we had set ourselves up for mentally. The last 2 years have been so scary, exciting, and rewarding at the same time. Our family is flourishing and Nicholas is proving to be a great big brother. We couldn't be more blessed as a family and I am so thankful that we stopped going to the doctors we were using the first 20 weeks of our pregnancy with Ava. The news that was given to us with no compassion. respect or understaning and was followed by encouragement to terminate our pregnancy has become God's perfect way of blessing our family and receiving the Glory for bringing multiple people to know Him.

Update

2009-08-10T18:11:00.000-07:00

Ava Michelle is doing just great. She is looking a little funny since I tried to even up her hair. All of the bald spots from surgeries are on one side of her head so I tried to just trim up the longer hair so it would not be so obvious...too bad it looks like a 5 year old just cut barbie's hair :0

She is still feeling perfect. She has 2 of her big teeth near the back coming in right now so she's not the absolute happiest she could be, but close. This afternoon, I ran up to the school with an empty stroller to get the kids and we walked all the way home and hopped in the pool...she loved that, she was splashing up a storm, whether the kids she was splashing liked it or not. Well, here are a couple new pics. Thanks everyone for praying for us and thinking of us. We are so grateful to have hope and support in our lives.

2009-08-02T18:55:00.000-07:00

Ava post surgery...

2009-08-02T18:48:00.000-07:00

She has been doing great great great!!! No more fluid collection, and no more fussiness and throwing up:) We are hoping and praying that this was the last of her surgeries for a long while. It's amazing the way God has blessed our family and we are so thankful for having great health care for our children! We couldn't be happier right now with how she and Nicholas have been doing. Here are a few more pictures of our munchkins!

2009-07-26T11:23:00.000-07:00

2009-07-26T11:16:00.000-07:00

2009-07-26T11:04:00.000-07:00

Home stretch

2009-07-20T17:26:00.000-07:00

Yeah!!! We actually got the surgery today to have a new shunt placed. We had a really really bad (this is an understatment) night last night, but today was great I got here with Nicholas at about 1:05 and within about 10 minutes they were here to transport Ava to the operating room prep area. My mom was a huge help with Nicholas while she got checked in and then me, Eddie, Nicholas, and my Mom were able to have a little time together. After Ava was through with Surgery her Dr. came to let us know it went really well and he wants to follow up in about 2-3 weeks. We are hoping that we can avoid that dreaded "bump" this time by having her at the setting with the most drainage and doing a really good head wrap for the next 24 hours. That would be awesome for her to not have to deal with. Right now, I just layed her down and am waiting for her to stop fighting her sleep. hopefully tomorrow will go smoothly. My mom will come from her hotel room with Nicholas in the morning and me and him will head back to town for school/work. My mom will be discharging Ava and taking her home to her house and as usual, Ava is okay to get back to daycare after that. There are no precautions or changes in lifestyle that need to happen after these surgeries. We are on our way!

Sunday

2009-07-19T04:21:00.000-07:00

Wish we were at the party last night, at Church this morning, and at Life Group and Amy and Chad's new place later...that would mean we were done here.

Eddie and Nicholas came to see us yesterday....sooooo AWESOME. Me and Nicholas went out to play on the rooftop playdeck here. We borrowed some movies and a puzzle and then Me, Eddie, and him all went to get some dinner while one of the aides sat with Ava. I was so happy to be able to see both of them.

Ava didn't have a great night last night. She seemed to have a hard time sleeping and was nauseated this morning and then had to have her 2nd IV taken out, which means she will have another one placed this morning (only to be removed and replaced with another during her surgery Monday). I think when they get here I should take a coffee break...I can't stand to watch that again. There are still no further indications of an infection. The Dr. came in this morning to pass that info along and let me know we are on for tomorrow. We should be able to get out of here Tuesday afternoon if all goes well.

Awake...

2009-07-17T23:25:00.000-07:00

It's 2:30am and we are awake, this is something new! Im soooo sleepy. Ava is doing alright. She seems to be throwing up in the middle of the night more often than during the day and I cannot figure out why. She is on anti nausea meds as needed which I am staying right on top of. I feel bad for the little peanut. Her nurses/med aides had a blast playing with her today she was really fun and feeling good. Tonight was peaceful and she was asleep at her normal bed time for the first time since Saturday. Ava usually sleeps really well from about 7:30 pm until morning, that hasn't been happening for the last month though. When she isn't feeling as good, she wakes up, usually once. Tonight is special though and she has been up twice and threw up on me just to say hello. :) Anyway, thought she would want everyone to know about that special accomplishment...goodnight(hehe).

Long week is getting longer...

2009-07-16T20:00:00.000-07:00

So I just found a draft I was trying to type up Thursday evening and got too tired to spell words. I figured due to what it said, I had better follow up. We found out thursday that the doctor wants to wait until Monday to do the surgery instead of tomorrow. One of the cultures (he very first one) had some growth, which is not great and he wants to rule out infection over a couple more days. I would say more if I weren;t so tired, but since I can't catch some zzzz's and I need to try to, that's about all there is to say about that.

Back again...

2009-07-15T17:30:00.000-07:00

Ok, so I didn't post yesterday because there was really no big news. Ava and I got to hang out all morning becuase I had my late day at work. I sure had fun playing with her and she had slept good. She was happy and laughing when I left for work. I came back after work close to her bedtime so that wasn't great. She was feeling a little sick and fussy during the day and then started feeling better in the afternoon. We noticed there was a little drainage coming from her wounds and were worried so we had the doctor paged. Later the nurse let us know not to worry because her external shunt was still getting fluid out as needed.

Ava slept great last night, she went to bed a little after 8 and didn't get up until her nightmare came true and they came in and woke her up to draw blood!!! ARE YOU KIDDING ME...who draws a babies blood at 6:30am??!! I don't know what they were thinking, my poor baby. I was about three minutes behind them. I had left to get some breakfast and came back to them stickin' her. And in the arm with no vein too, so they had to do it again. Seems Ava only has one spot on her body to draw blood and that is her right arm (guess I'm supposed to remember that forever and stick a sign to her:) HA! After that fiasco, her Doctor and his huge team came-seriously, right after. They were concerned about the fluid that had seeped through her dressing and they were upset that they hadn't heard about it (the Nurse had paged and made a judgment call when the Dr. on call didn't call back-but she didn't follow through and page them again). I was a little upset about how all this was going, but they decided to change her dressing and I like the new way it is wrapped better.

That was not a great start to the day and for me, and sitting at work, it just got worse. My mom stays with Ava during the day while Eddie and I are at work, this evening when I saw her she was happy and feeling like Ava had a good day, but from what I learned from her earlier email, it didn't sound like a good time. Ava threw up every time she ate and seemed uncomfotable for a while. Eventually they decided to put her on a anti-nausea medication and she started feeling better. They also made a few changes to how all her stuff is rigged and what needs to happen in order for her to be up out of bed and hangin' out with us. By the time I got back here, Ava was doing great and seemed to be feeling better and BONUS, I still made it in time to relax together, snuggle, and put her to bed. If only I could snuggle with my guys too:( I really really miss them. I can't wait to see Eddie tomorrow and Nicholas hopefully the next day. I haven't seen either since Monday if I am remembering correctly.

Today was terrible for me, I guess it wasn't as bad for them as I thought but I was a broken person, aside from everything else I can't help but worry about all of my other responsibilities. I am already working through my lunches this week to make up for some hours last week and now I found out that I have to get a couple more extra hours in before her Surgery! Really-could this week get harder. Im already commuting to see my littlest baby in the hospital and now I get held up even later. Most people wouldn't even be at work at all--including myself if I had any other option or more days left available to take. Im so glad for all the help we get. Grandparents ROCK!! Both sets help us stay sane with all of their help. I've even been offered meals and cleaning in order to help us cope and that is aside from all of the support, good listening, compassion, and prayers. Thanks so much everyone! Im so glad to have God as my solid rock to stand up under and so glad for all the other solid rocks He's placed in my life. Each of you is a gift. Usually I can do this...I'm on "autopilot" as me and Eddie now say, but right now, I can't do it alone anymore. I need you guys and I need Christ who never leaves us even though we constantly forget to rely on Him.

She's in the clear....so far so good:)

2009-07-13T17:53:00.000-07:00

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...

2009-07-13T15:18:00.000-07:00

2009-07-13T15:06:00.000-07:00

Been a long time...

2009-07-12T11:12:00.000-07:00

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:)

2008-11-06T08:40:00.000-08:00

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.

2008-11-06T08:26:00.000-08:00

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...

2008-11-06T08:06:00.000-08:00

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.

Hi again...

2008-09-20T08:40:00.000-07:00

I ran into a woman at Beaners (er Bigby Coffee) who reminded me what a blessing Ava is and how God is working and always has His hand in our lives. She stopped and immediately prayed for our little angel and asked me if I belonged to a church and if I had a relationship with Jesus. I long to be more bold like this!! It was encouraging. Ava is doing really well. Check out myspace.com/nnesaade53 to see videos of our kids every now and then because I can't seem to get them up on this site.

Looks like...

2008-09-12T07:37:00.000-07:00

I posted so many pictures that you have to go to the bottom of the page first and click on "older posts" to see the first set of pictures and really see exactly what the progression of her hemangioma was like. Sorry, it's just been a really long time:)

Also for those who would like to remember Nicholas's journey, his first year is posted on http://www.coachsaade.blogspot.com/

Update-June to September

2008-09-12T07:08:00.000-07:00

Alrighty, it's about time huh? A lot has been going on. I decided to post all of those pictures so that those of you who don't see Ava a lot can see just how far she has come over the last few months. I started at the bottom with the older ones, some may have already been posted and most have correct dates on them. We have had our hands full with appointments, summer fun, working, and finding time for just the two of us. I have taken shifts at work on and off for the last couple of months since some of Ava's doctors have been slowing down on seeing her a little. This is a good thing:)

Ava is doing very well, she just had her 4th laser procedure to help the ulcerations on her face heal and we don't go back for about a month to see how much this one helps. I am still quite upset that we could have gotten a jump on all of this and treated it before any open sore ever started. looking at pictures I remember taking her in even before the scab started to ask about these little dark black areas under her skin on her cheek and on her nose and the nurse thought maybe she had scratched herself. Now knowing that this was just the start of the skin breaking down which happens sometimes and that it was not the result of a scratch or anything like that is frustrating. We now know to treat (with the laser) any areas that have started to look like that and it prevents them from opening up as those ones did. It was amazing looking back at just how bad it had gotten and how much better she is doing now though. As far as everything else goes we really have had no bad news. She is developing as she should be for her age as far as Neurology says. She is talking a ton and laughing and smiling at mama, daddy, and Nicholas among others. She is holding on to toys and whatever else we give her. She seems a little more behind in neck strength than other 4 month olds to me but if thats the case I think it's because she was limited in her tummy time and things that would help strengthen her neck and back since we were scared she woud hurt her face on the floor facing down or playing with toys. She always has her hands in her face!

Nicholas is doing great. In the last 4 months we have done a lot with him. We moved, had Ava, still continue with Life Group and church and socials, etc. We have spent time with some good friends and tons of family. He went camping with Eddie and I and my parents, he went to the fireworks and saw inside of a fire truck, we've spent time at the park, the zoo, and Holt Hometown Parade as well Nicholas getting to see his Grandpa and other family members get baptized this summer. Also he started potty training a little over a month ago. He goes whenever we tell him to but he's just starting to say when he needs to go every once in a while.
He doesn't really seem jealous at all an half the time not even really interested in what's going on with Ava...this makes it easy for me since he isn't always in her face or wanting to hold her. He has his moments though where he gets really cuddly with her.

I definitely see God and his amazing will at work in all of our lives and I see how Ava's life is affecting others around her, including us, and know that God is getting the glory for this. I know he has a plan for her and for all of us. She has forever changed us and our family:) Thanks for checking in!!

2008-09-12T07:01:00.000-07:00

2008-09-12T06:58:00.000-07:00

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2008-09-12T06:31:00.000-07:00

Hi Again-upsetting report

2008-06-20T09:10:00.001-07:00

Over the weekend Ava had fun seeing lots of her family who had not met her yet. Honestly I was feeling a little awkward about bringing her because I didn't know if everyone knew what to expect when they saw her or if they would be caught off guard. I was more than a little comforted by everyone letting me know that they had been reading the blog to check up on our growing family! We went to Eddie's cousins graduation openhouse and to my cousin Jeremy's wedding. We took both Nicholas and Ava to the openhouse and just Ava to the wedding. Nicholas had fun going swimming in his Aunt Mary Joe's pool during the openhouse. We spent Father's Day with both sides of the family and had a relaxing day.

Ava has been doing well, she is starting to make cute little noises and coo, I am just waiting for her to smile at me on purpose. This is something I am just curious about since I am not sure if it will take her any longer than other children to do things like that. Nicholas is doing great with her. He gives her lots of hugs still throughout the week but is otherwise not super interested or jealous. Bedtime is when he wants my attention most and we seem to have that worked out. Yesterday while taking a walk with their Aunt Michelle I got a call from the genetics lab with results from her genetic testing (they are making sure if there are any underlying syndromes or abnormalities that may have contributed to the other things going on (hemangioma, cataract, vascular area in her brain, tortuous/long aorta) since they may not be related to the DWM diagnosis. She will be meeting with us soon to test our blood because she found a duplication on part of one X chromosome and wants to see if either of us has the same duplication. She says that this will not impact Ava in any way differently than what we already are expecting for her development and that she actually hopes one of us does have the same duplication becuase that makes it insignificant since we don't have any of the same health problems.

This week was not supposed to be a big week but it was. Any of you who saw her recently saw the "owwies" on her cheek and nose. I called the office about these and was told by a nurse that it didn't sound like a big deal and that I didn't need to come in and have them rechecked so while I was on campus I didn't stop in. Later I went to Ava's eye doctor, she was very concerned about how her face was looking compared to the last time we visited and asked if it was okay if she called that same clinic bacck and reiterated how badly it was looking so they would change their mind and see her. I did end up going in but our doctor was out so we saw another one in the office. He told me that it was not Necrotic(or dying) as the eye doctor had suspected and gave me advice to do nothing with these sores and to just let them heal on their own. I was slightly beside myself and asked if he thought the plastic surgeon could also take a look since he could use laser treatment if he thought it would help. I got in soon and this doctor also told me not to worry and gave me the same advice. Not to put anything on it, no pain meds, and just to wait it out.

I started to wonder about this advice because nothing was happeneig after 2 weeks or more to indicate that it was healing. I took matters into my own hands and tried to remember what dermatology had told me when she first got the sore on her ear-before it ulcerated. So I put some vaseline on her face and to my horror, the scab started coming off to leave an open wound underneath. I called dermatology right away and asked if I could email some pictures and get some advice. They were great and one resident even helped me out over the phone all weekend and made sure to get Ava right in on Monday. I met with a different laser surgeon, not our plastic surgion, who told me it was good to have the scab come off and to continue to get it as greasy with vaseline as possible over the next few days since the laser could not penetrate through scabs and then she could have surgery. He also said there would be a much higher chance of scarring since it took so long for me to get to him.

This news was really upsetting because I am not a doctor and instead of finally figuring this out on our own, we should have already been referred to him by our other 2 specialists that work on her face and weren't. We are lucky that we by chance ended up calling. Since then I saw one of those doctors and did express some concerns about this situation. She had her laser treatment yesterday and it was not as bad as I thought it would be and she is doing fine. Doctor said to keep her really greasy with vaseline until we see him again next month. So when you see her expect her to be shiny:) Laser Surgery can take up to 3 or even more treatments to heal these ulcerations so we have to be patient. I can't wait for her night time and morning routine to not include a horribly painful cleaning of open wounds. She screams her little head off and that is really hard to take every day. Even though babies are extremely resilient and don't have a very long memory, I'm still looking forward to having a pain free little girl and now I feel like there is light at the end of that tunnel. This afternoon Early On will be coming over to check her out-they send therapists over and it's free of charge to help with her development and help us learn as we go when dealing with any developmental differences she may have from other children. They will be checking to see if she is meeting the current developmental milestones for a 1-2 month old baby and giving advice on how to help things along and what to be expecting soon. I think they will have an evaluator and a physical therapist coming today.

Since June 4th...

2008-06-12T19:45:00.001-07:00

Okay, so we have had a few appointments since the 4th. Lets see, we met with the doctor about her hemangioma and he assured me that even though we thought things were looking worse, medically it was doing better. I thought when it was bright pink/red it looked healthier than now, at a grayish purpley blue shade. Also there are areas that seem to be breaking down and we are scared that they will open up and aren't sure what to expect if that happens. We are really happy to report that he thinks it looks like she is responding really well to the steroids.

We met with a plastic surgeon on the 5th about possible laser surgery on her ear and future reconstructive surgery (after the ulceration heals). He told us that laser treatment is not a good option for her right now because it can cause swelling and further irritate the wound. Also we asked what his thoughts are about the little sore spots on her face that seem to be scabbing and he told us not to worry about that, that it would heal on it's own better than it would if we treated it with laser. Just to let it heal. Now we are in the same situation...just waiting for our poor girl's ear to heal. We were told to meet again in a week because he wants to keep close tabs on it to ensure no infection begins.

On the 9th we took Ava in to her pediatrician because she was sick and found out she had a cold.

The 11th was the re-check by the plastic surgeon and he thinks she is healing okay and we should stay the course. He also informed us of how great it is that we got her in to the dermatologist, the blood (Hematology/Coagulation Disorders) specialist and himself so early. He said he could tell it would have grown rapidly without the steroids. I guess her nose most likely would have swelled beyond what plastic surgery could help and on the spots where the hemangioma is up in her hair and on the side and back of her head the hair could have fallen out or thinned significantly, and changed to a different lighter color. These are just two of the many things that her case would have been like if we had not started her steroids at less than 3 weeks old. Most patients don't get in to see these specialists until 3 months or older.

On the same day I went to have her hearing tested and her brainwaves showed a response in both ears... Now we know she can hear and see just fine.

Today, the 12th, I went in with her for a cranial ultrasound and a re-check by the neurosurgeon. This was my favorite appointment. The ultrasound technician was so great and she was so positive and friendly that she made my day better and then when we met with the neurosurgeon we also had good news. He said that her head's growth was more on target now than he thought from the last measurment and that the fluid in her brain does not look like it will reach true hydrocephalus. There is fluid in the ventricle in the back which will need a shunt at some point to help her developmentally, but he has been checking the other ventricles for fluid growth which would indicate imminent hydrocephalus and they are still not measuring in a way that concerns him. He also said that usually if it's going to happen it happens by now, but not to completely rule it out (He always makes sure not to misguide us as far as ruling things out). He said he was very encouraged and pleased with the results from today and was all smiles. Of course I was too!! I'm really happy with this weeks appointments but wish I didn't have so many. By the way, Nicholas is doing really well and has recovered from the Walking Pneumonia that he had and Ava's cold is finally slowing down:) As of now, we only have one appointment next week aside from the home visit by Early On's Physical Therapist and Consultant!!! YIPPIE!

We still have to get a good one of all 4 of us:)
Daddy got a good shot of us...usually it's me behind the camera
~Let the Sun shine in~
An updated close up of the hemangioma changes, these are the sores I was asking the plastic surgeon about, but I will ask at Hematology too(they are the ones that specialize in working with Hemangiomas.)

Pictures, pictures, pictures...

2008-06-04T06:37:00.000-07:00

I thought it was cute that little Ava looked like she was praying:)
Didn't take long for him to get bored of that...

This girl looks just like Nicholas did at this age!!
Here is Grandma Secor with Ava at almost 1 month old.

Update-May 26th

2008-05-27T17:52:00.000-07:00

Hi everyone. Last week we met with Genetics and Neurosurgery. They drew blood and took her vitals and they will contact us in person if they discover an underlying syndrome or disorder that can explain her situation as far as things she has going on other than the Dandy-Walker malformation. If they don't find anything they will set up a follow up when she is 6 months old. The 2 main things they normally would think of for her case are Sturge-Webber and PHACE(S), as Eddie mentioned last time. The latter has already been ruled out and PHACE(S) can't be tested for genetically. Officially they don't want to say she has this until they rule out all other possibilities by way of the blood draw...looking at her chromosomes, her DNA... It sounded like in the end if they can't find anything, they will go ahead with a PHACE(S) diagnosis and to us it sounds like the pieces fit for this diagnosis.

The Neurosurgeon didn't really tell us anything new. We still aspire to wait as long as possible before doing the conventional angiogram and/or the shunt surgery. He did explain that the risks aren't as high as we thought they were for either procedure. The doctor did say her head circumference was growing fast enough to give him pause and would like to meet with us again in a couple weeks to see what changes occur.

We started her on steroids to slow the growth of the hemangioma on her face. She will be on these for 3 months and then slowly wean off. Hemangiomas grow rapidly the first year and then slowly decrease in size and color until they are gone (usually by the time the children start school-if its a little later, laser therapy is recommended). The steroids are being given because of the location of the birthmark-it covers one eye and her nose which could cause problems with her vision and breathing. If they do not work well for her or if a need arises for it the doctor will consider laser treatment for these areas as well as her ear.

On a good note-Ava is doing great at home. She has been doing well with the new meds and has not reacted negatively. Nicholas loves on her and wants to give her hugs and kisses or just touch her...no real holding yet:) She snuggles with her Daddy and cuddles with mama too. She is nursing and gaining weight well and seems all around healthy like any other baby. She does know how to get what she needs though and makes herself heard. We just love every minute with her and it's cool to see our family come together every night as we juggle 2 children now.

PHACE Syndrome.....

2008-05-21T09:43:00.000-07:00

Here are some pictures of the family......

Nicholas all ready to go to Grandma and Grandpa's house Ava and I at the eye doctors yesterday
Getting ready for bedtime

Today Ava had her appointment with the Dermatologist. We have found out that Ava has what is called PHACE Syndrome. The link for this specific syndrome doesn't tell us anything that we did not already know. However, it does tell us that there are other children with exactly the same malformations living in the world. This is really encouraging to me because when things are identified, they can be treated more efficiently.

Two days ago, Ava had an appointment with the eye doctor and everything about her eye is perfectly normal except for the facial hemangioma (birth mark on her face). Due to the amount of swelling under her eye, it is harder for her to open the right eye. If she doesn't open it the same amount as her other eye, it can cause development problems in the future. Today at 1:30 Ava will be meeting with a specialist who deals only with facial hemangiomas. We will know much more after that appointment....

Her appointment for tomorrow is with the Neonatologist to inform us of what the plan for her is...we are both pretty nervous. Than we go to see a genetics counselor to hear whether or not we had anything to do with passing Ava any of these concerns....

5-18-08

2008-05-18T19:02:00.000-07:00

Today was an awsome day. We finally got a chance to thank everyone at our church for all they have done, especially for their prayers. Ava has four appointments this week in Ann Arbor and Brighton. She is back to her birth weight and continues to do well with eating.

While I share mostly good news on blogs and with people in person, there are still quite a few things we need prayer for. Ava may need a rather risky procedure done after she turns 6 months old to see what is going on with her blood vessels in the front of her brain. Nicole and I know that if its in Gods will to fix those blood vessels, that he can do it without surgery. We are praying that is the case. Tomorrow we are going to an eye specialist to see whether or not her right eye cataract will need surgery or not. Some of the doctors say that she will and some say she wont... we will know tomorrow.

Tomorrow we also find out whether or not more fluid is around the brain and if there is, what we need to do. I don't think there is, but we will know for sure tomorrow.

Please keep Ava in your prayers,

-Eddie

5-15-08

2008-05-15T18:07:00.000-07:00

Here is a picture of our little miracle. She is a cuddler, that is for sure;) I plan on adding a lot more pictures now that I have this figured out. Here are a couple of pictures of Ava's bedroom...for now she is sleeping right next to our bed.

We just got back from our trip to U of M. Ava had an ultra sound done to see how much fluid is around the brain. We will not know if there is an issue or not until Monday the 19th when we go to our next appointment in Brighton. She seems to be doing well!

5-14-08

2008-05-14T06:53:00.000-07:00

Ava is doing great! She is still eating really well and has no problem letting us know when she is ready for her next meal;) When she is awake Nicole and I put her on her belly to work on some motor skills and to make sure that she is useing both sides of her body equally. She is doing amazing in my professional judgement...hahaha yeah right!

Please pray for her, tomorrow she has an appointment at the U of M hospital to check on the fluid around the brain and the need for a shunt in the future.

I also want to share that Nicole has been the most amazing woman in the world as far as I am concerned. She holds it down at home along with recovering from having the baby. I know that the perception is that I am the perfect one(hahahaha), but she is my role model in so many ways. The people who are around her already know that though.

-Eddie

5-10-08

2008-05-10T18:54:00.000-07:00

Today was a beautiful day. Ava got her visit from a visiting nurse. The nurse was impressed with what Ava can do and her vitals were great. Nicole and I got a lot done around the house and spent a lot of time with both Nicholas and Ava.
Ava ate great again today and if we hadn't told you about what is going on with her, you would think that she didn't have any complications. She is so amazing to us and I know that when you meet her, you will feel the same;)
The only bummer about today was that I lost it in the car and got pulled over for speeding....luckily the police officer had mercy on me and let me go without a ticket.
Today was a great day!
-Eddie

Are we going to become a permanent fixture of Mott's Children's Hospital??

2008-05-09T15:38:00.000-07:00

Looks like no:) Just this evening we were told that the rest of the concerns regarding Ava's health can be addressed on an outpatient basis...this means tons of driving, but also that we get to go home tonight with her and see our Son too!! I miss home sooo much and just want to put these little angel's of ours to bed in their own beds. I am relieved and terrified at the same time as we are not completely sure of Ava's prognosis at this point and may never be completely certain of how long we have with her and how she will be able to interact with us and all of her loved ones. God told us if you Ask, Seek, and knock that He is faithful to his promises and will only give us what we can handle with His help. Also I know that he will get the glory somehow through this miracle He has performed in our lives, the doctors are completely surprised just to see her eating, and waking at intervals during the day. She will affect us and others no matter if it is for a short or long time. This should be more relieving than it actually is at this time to me. I know the truth in my heart, but part of my heart breaks anyway. I just want to have as many wonderful days with my little girl as God gives her and us.
Please don't forget this permanent prayer request of ours for our daughter's health.

Our Little Princess

2008-05-09T07:59:00.000-07:00

First we would like to thank everyone who has been praying for our family. We created this page as an attempt to keep everyone informed of what is going on with Ava. Please leave a message if you like.

On Sunday May 4th at exactly 7:37 p.m. Ava Michelle Saade entered the world. She is so amazing and such a miracle to Nicole and I. Ava has a birth mark on her face that stretches from her nose, over her left eye, and across her ear. Nobody has been able to confirm whether or not the birth mark is of any significance or not, so we are little nervous about it. The type of birthmark it is, has been said to (most likely) fade significantly if not completely over the first year.
Ava is so strong! While her heart is not a concern for us and has been cleared by the Cardiology team at U of M, (not to be checked for another 6 months) she has multiple abnormalities in her brain. They are as follows:
1. Her cerebellar hemispheres, which effect movement, are separated when they should be connected-and they are shaped differently than they should be.
2. The cerebellar vermis which could normally connect the two hemispheres making it possible for them to communicate is not there at all.
3. She has no corpus collosum which helps communication between the left side of the brain and the right side.
4. There are blood vessels that are in the front of brain that carry blood to several areas of the brain that are of major concern right now. Ava had a CT Scan yesterday (May 8th) and we are waiting to hear from the neurosurgical team to hear more about what needs to be done for that specific concern. If these vessels are really tangled or abnormal any type of surgery may have a heightened risk of death.

What a Blessing Ava Is!

After finding out about Ava having Dandy Walker Malformation on January 2nd, we have been on a emotional roller coaster. At first we were told that she would most likely die right away. Since then, we have been told by EVERY doctor that they were encouraged that Ava was most likely going to have a more mild version of Dandy Walker and that people would most likely not notice.

Now they are saying that odds are things will be more severe since they can see more detail on the MRI that was done after she was born.

Ava is doing better than others; she is eating well, going potty, looking around, moving hands together and apart, picking her head up and turning side to side, she can roll, she can kick, and most importantly, she can SMILE (which makes Nicole and I feel like everything will be alright).

BUT.....

Through our faith in Jesus Christ we have learned over the past 10 years that God creates all of us just how he wants to for his purpose. Ava is not a mistake. In fact she is our miracle and has given us the biggest reality check about what is important in life and what is not! Its not our houses or bank accounts, its not about fitting in and doing whatever it takes to do so, and most importantly its not about me! What life Is about, is taking time to thank God for all He has done for all of us. The good, and the bad. Its about serving others in order to glorify God and to show others His awesome love through our own actions. Life is about community and giving more than you take. Ava and Nicholas are so beautiful and they both deserves a place like that. Lastly I would like to share the verses that speak to Nicole and I about Ava.

Oh yes, you shaped me first inside, then out;

you formed me in my mother's womb.

I thank you, High God-you're breathtaking!

Body and soul, I am marvelously made!

I worship in adoration- what a creation!

You know me inside and out,

you know every bone in my body;

You know exactly how I was made, bit by bit,

how I was sculpted from nothing into something.

Like an open book, you watched me grow from conception

to birth; all the stages of my life were spread out before you,

the days of my life prepared before I'd even lived one day.

Psalm 139: 13-16

Love,

Eddie, Nicole, Nicholas, and Ava