Update-May 26th

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.....

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

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

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

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

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??

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

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