If you are just joining us, you may want to start where it all began at " introduction" http://mysteryandmiracle.blogspot.com/2012_03_01_archive.html .

My pregnancy came as a surprise to us in march 2011. I was scared but grew to be excited and looking forward to meeting my little girl. We talked about all the things we would teach her and get her involved in. I dreamed of what she would look like and I looked forward to all the firsts and even the teenage years where I feared she would be too much like her dad and I. My dreams shattered when I was told they saw a shadow on her brain. Follow up tests, 3 hours away, gave us her diagnosis. What we were told, was beyond words. Beyond any emotion I ever felt before. Excitement turned into fear, worry, resentment, blame, anger, and devistation. I struggled with depression and had to push myself to try to be happy. Everything changed on Nov, 6 2011 when she was born. I heard her cry and held her. I knew she was perfect and everything was going to be fine. And I knew that I was going to designate my life to help find research and better understanding so no one ever has to go through what we did. I am now working with another mom who had been delt the same hand. She has put together a non profit organization for their diagnosis. Follow our journey, through my eyes and gain a better understanding of these diagnosis, prognosis, how a parent of special needs views the world around them, the struggles of day to day life, most of all, watch my baby girl grow up as she contunies to impress us all. We are so blessed to have this little miracle in our lives. But the future and what lies ahead, is still a mystery.
Feel Free to ask any questions or contact me directly. Email me at pandabear12178@gmail.com.

Friday, July 13, 2012

Thoughts of lately

Baby girl has been doing great lately so I havnt had too much thrilling to talk about. Early Intervention came over a few days ago and determined she is about 25% delayed, or 3 months behind. Which isn't too bad. It can be hard on me sometimes that shes not doing things, but I know she will get there.
 They are going to get a hand splint for her right hand so she uses it more. Also the OT is going to be working with a lot of scensory tools to help her acknowledge that right hand. Today however, she was actually frequently using it to grad at toys :)
 The therapist is also going to be lending us a bath chair since she is outgrowing her baby tub but its yet able to sit up on her own to just be able to fill the bath.
 I am trying to get her into seeing Kathy for ABM but it hasnt been managable. She was recently approved for SSI which is a huge help. I do have to send in our pay stubs so lets hope they still say shes eligable. I think its complete crap they less you make the more they give you. I would love to be able to work to pay the bills and have SSI be ONLY for Arianna. The way it should be. If it means leaving your job in order to get SSI then you are only breaking even, or even bringing in  less. Defeats the purpose a little bit. I am surprised it only took a month to get a decision. Usually takes about 6 months.
 Jesse called me today while I was at work letting me know when he went to fill up her bath he put her in her crib, on her back and she was playing with her mobile. When he came back in, theres Arianna on her belly, covered up and a NUK in her mouth sleeping. She amazes me everyday.
 I been doing better as far as moods go. Arianna and I have a pretty good routine during the day and the day actually goes by too fast now. Before it seemed to drag on and I spent most of my day wishing I could just sleep or call Jesse crying because I felt like I just couldn't do it anymore. We did have a talk though about responsibilites and hes been helping me out greatly now which takes a ton of stress off me. His sister has also been around to help out and keep me company.
 I been seeing a few soon to be mommies commenting about getting an NT screening/ Amnio. It does boil my blood a little bit. I wonder if it came back showing something if they would abort? I sometimes would like to tell them something like Arianna's DX would not show up on any tests. Its rarely even caught during pregnancy. If you are willing to raise a child with special needs, why checking to see if there is a risk?
 I find it amazing doctors are even able to bring up aborting because of a diagnosis. Somehow its not okay for women or teenagers who cant take care of a baby to abort yet a loving parent who is willing to do everything to care for their baby regardless of their condition is told to abort? I would rather someone abort early then bring a child up in an abusive or neglagent environment. So you say they can give them up for adoption...there are millions of kids up for adoption and just as many in foster homes. Point is, these children deserve the best even if they have a diagnosis. And i can gaurentee they will be a million times better then what you tell us they will be. I just cant comprehend why that means a child doesnt deserve to have a life.

Monday, June 25, 2012

New research and therapy

Since last post, Arianna has been getting better with the reflux. We say a gastroenterologist a few days ago who put her on medicine to help her pass her bowels. This is apparently a common issue with Schizencephaly due to muscle tone. It seems to be helping her, she's not aching her back as much. She also up'd her dose of Zantac to three times a day.
 Next monday we will be returning to CHOP (yay!) for her genetic testing results. I cant really take that appointment seriously considering they don't even know if it is genetic. But possibly it will show if there is a genetic mutation that happened. Im not sure if I would rather be told it was genetic or environmental.  I stressed a lot and still do often about how it happened and if we hadn't been living in Virginia i it would had happened. Trying to not think about it and take everyone's advice to stop thinking about it and just concentrate on the now and doing what's best for her. Which I do but the guilt is there. And I been so scared to get pregnant again that it's effecting our relationship sexually.
 My moods about it are so back and forth. Im so depressed sometimes and sometimes I think of the fact that it is amazing I didn't get pregnant before I did. That the 6 months we were in VA I did get pregnant. Leading me to believe it really did happen for a reason. And I do have to count my blessing and I am sure there are other parents of schiz kids who are probably thinking I should be more thankful that Arianna isn't dealing with the seizures, the braces, the 100 different medicines. Which I am, but like I said the anxiety comes and goes.
 If you were to read up on it, almost all articles say that they will not live the their second decade of life. Now there are some adults with schiz that have their own families although I believe they are only effected uni-laterly where Arianna has it bi-laterly. The oldest children I know of I think is around 15. Its scary, but I also have to keep in mind there is really no research being done and most of these articles are from a few years back. Ari has already proven them wrong and I am hopeful it will continue that way.
 This is an interesting article about the statistics of where Schiz is mostly found:

There is also a ton of research being done with stem cells:






Thank you Trish for the links.

Its a lot to read about but this is what I spend my time doing. Along with taking care of miss.

 When Arianna was about 2 months old I looked into the Anet Baniel Method because I heard great things about it not only from Schiz parents but with other disabilities as well. We had her see an ABM therapist and after only 4 sessions I seen a great improvement. Arianna has been able to sit up better unassisted, rolling over to her belly and playing there, and using her right hand more. We will no longer be seeing early intervention because it contradicts what ABM is doing. Its a wonderful program and I recommend it to anyone. This is Katherine O'Neil's website. She is so great with Arianna.

 I did also start a fundraiser for Arianna to help pay for the therapy. It has been hard being a stay at home mom and trying to cover everything financially. Even though this therapy is out of pocket and EI was free, its completely worth it. Im going to do everything I can for her no matter what it takes.


Wednesday, May 30, 2012

Heartache and Hope

The past few weeks have been a roller-coaster of emotions. Not that thats a new experience for me, but I got a little taste of what so many of other schiz moms deal with on a constant basis.
 Two weeks ago we took our baby into the local ER. It was apparent she hasn't been herself for a few days. It was a struggle to feed her. Feedings were accompanied by her arching her back, flailing out her arms and crying. We comforted her and continued on, chalking it up to belly aches or teething. Her crying turned to screams. I was worried she was having seizures, so we rushed her in. The doctors weren't sure if it was indicative to a seizure given our descriptions and the video we took of her. Their ER was not equipped with EEG so we were sent home to follow up with her neurologist the next day. She was refusing to eat the entire day. We could not even get a pacifier near her mouth without her sceaming. With not being able to get her to be seen by the neuro, the pedi, or a gastro, we did what we thought was best and drove her 2 hours away to nemours children's hospital.
 Fortunately they took her in right away. We explained everything and showed them the video, they as well, did not believe it was a seizure and were concerned of reflux or aspiration. They took her to get a chest and stomach xray to look for fluid in the lungs and make sure the intestines weren't twisted. The tests were clear thankfully. In fear of her being dehydrated they put an IV in her hand. My baby at this point has been doing nothing but screaming and crying for 2 hours. Shortly after the IV she past out on my chest and we were sent to our rooms for the night. I have never felt so much pain in my life. Hearing your baby cry in pain and not being able to know what is wrong is beyond words. You can feel your chest tighten, its hard to breathe. You wish you could take every ounce of their pain onto yourself. You want to punch every nurse and doctor that touches her.
 Our room was shared with another baby and her family. Im not sure why they thought room sharing with babies is a good idea. Or why in hospitals they have to check on you every time you finally fall asleep. I did have to request a new room. Arianna was exhausted and the poor baby next to her was hooked up to a pump and was in need of a lot of care which required constant check ups and procedures. An overly tired baby is not an easy situation.
 Our new room allowed her to rest and she somehow managed to sleep through the night. The crib she was placed in was all metal, about 5 feet away from Jesse and myself. They recommended she sleeps propped up but little miss always flips to her belly. They started her on reflux meds as well. This is where I felt like an idiot. Her primary care physician put her on reflux meds a month earlier which I denied giving to her. The only reason I took her in was for blotchiness when she ate. Non of the other symptoms were ever present. They thickened her formula with either oatmeal of rice cereal.
 The next day she seemed to be back to her regular self. They eventually disconnected the IV and we were not able to go home until she was sufficiently wetting diapers. She has always had trouble passing her bowels. Her doctor their said this could be causing her reflux with everything being backed up. They diagnosed her with Sandifer's Syndrom. Basically bad reflux.

Two days after we got home, we returned to Nemour's to see the Opthalmologist. Arianna now has to wear an eye patch for 2 hours a day which really isn't that bad. I thought it was going to be an all day thing. Her one nerve in her eye hasn't been fully developed. The patch is used over the "good" eye to help strengthen the weak one. She is doing very well on it except for that I think she is learning to just fall asleep when its on rather then dealing with it. I do believe it is improving her vision already. Over the past 2 days she is really focusing on using her right hand which she has never done. Its fun to watch her study and hand and concentrate on "getting it to work".

I am officially a stay at home mom and not regretting the decision at all. My day is filled with playing with Ari, doing therapy with her, and researching doctors, hospitals, and all other information I can find. I still struggle with everything emotionally. Especially at night. I find it hard to keep up with the boards of other moms because I feel like its hard to relate anymore. I sometimes feel detached from the "normal" world. Which is okay. My only focus is her and finding answers. In some weird way, once you can accept it ( as much as you can at least ) you are almost grateful. Of course I wish my baby wasn't going through this, but I do believe god doesn't give you more then you can handle. And I do believe she chose me for a reason. And I do believe with the help of a great team, we can change things and we will have answers in the near future.


Thursday, May 10, 2012

Wishful thinking

Well, apparently when you click the left weird side button on the mouse, it deletes everything.
Yesterday we saw the nuerologist, which was a big dissapointment. Of course me and my 1 million questions asked about related diagnosi's and " why yes Amanda, she does have Microcephaly". Well shit. Thanks. I probably should have know that, its proably in her MRI report. Im sure I over read it considering I could barely look at it when we first got it. Now that I am getting better with it I should go re-read it. And now what I am so familiar with neurology terms I could be Dr. G's personal secratery. Fortunatly I am rather fond of him or else my day would had been pretty terrible. That and if Jesse didnt recommend Dairy Queen :)
May 22nd we have to go see the Opthalmologist because her left eye goes inward. She will most likely have to wear an eye patch over her right eye to strengthen the left. I can only picture Jesse wearing one too and playing pirates with her...
If you remember, two weeks ago we took her to the PCP and ER because I thought she could be aspirating. Dr T said she has reflux, ER said shes getting a cold. Dr G said shes probably silent aspirating. Thank you! I never did give her, her reflux meds anyway. Oh other Schiz mammas I can now see the frustration in getting people to listen to you and more of what you have to deal with. Its hard knowing something is going on and everyone brushes it off as over reactive parent. So I am in the process of skipping seeing Dr T and going right for the swallow study. Or just scheduling to see a gastro. Lets pray its not aspirating though!!! I was so confident Ari wouldnt have to go through all of those surgeries and complications, now theres talk of all of that...

A friend of mine shared a poem with me, now I am sharing it with you:

The author of the poem writes: I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this.....

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I agree this is about how it feels. Although when I first "landed in Holland" it was a terrible place. Maybe I landed in the dead of winter, and now its getting warm and the tulips are starting to bloom. It takes time to fully accept youre not where you had planned to be. But I try to remember, maybe its not what I planned, but I think someone else did have it planned for me. And I am starting to realize, this is better then Italy. Arianna has completely changed who I am and how I view things. I would never take that back.
The only thing I really fear is her being in pain. And I fear people criticizing her when shes older and may look and act "different"

Also, if you havnt seen this, its pretty amazing. I thank people for telling my I am so strong and an inpiration. But this mom is my insipration and I cant even begin to think what shes going through. As aweful as I think I may have it, I have to count my blessings. And I wish I could take all of this away, I wish no child or parent had to go through such things....

Thursday, May 3, 2012

A look through our eyes

I more then often having my feeling bad days. Today was exceptionally great.
 I will be working with a non profit organization for Schizencephaly. I am so greatfull to be a part of it. Jesse and I had thought about doing the same, but I would rather work together with someone instead of bumping heads and possible conflict.
 Since receiving her diagnosis, I battled with myself of "why me." Why is it that I done all I could and something was still wrong. Why is it some people shouldn't even have kids, and have "typical" babies. Now I am starting to realize why she chose me. Its almost an insult to her to even think "why me". I couldn't ask for a more perfect baby. And I love her more then anything and wouldn't trade her for the world. I am still scared for her of course, but I will do anything for her she needs. I will take the time to care for her and work with her. I will fight to give the world a better understanding, doctors and society. Where as most parents wouldn't do this. Or the people I am referring to anyway.
 Being a parent of a special needs child completely changes you. Or at least it did for me. It makes you more patient and more defensive and intolerable at the same time. I have all the patience in the world for her, I have no tolerance for ignorant people. I will be the first to snap if someone is being ignorant to a special needs person, I correct people when they use the word "retarded" openly or think its funny to joke about " the short bus" or similar remarks. I will speak up if someone is complaining about their child being out of hand or they talk to much, ect. I just wish people could step back and see that there are families where our kids arnt able to do these things ( walk, talk, ect ) and be thankful for what they have. I will never take anything she does for granite. But I guess thats not an outlook you have unless you were in my shoes.
 A few things WE may see differently:
   There was a thread going around about how the cartoon Rugrats really happend. Heres a line;

 "he had a brain hemerage, which resulted in a deformation, as he grew up his damage only became more evident, by the time he was 9 in All Grown Up! He lived as an outcast, being ridiculed for his weirdness, and retardation, the immense guilt over this is what led to her drug use"

 One cause for my daughters diagnosis is a stroke, or brain hemerage. Schizencephaly is a brain malformation. Most will, have a form or retardation. And we are scared to death of our children being ridiculed. But thank you world for making a joke out of it.

Feeding tube diet appeals to brides-to-be | abc7.com

 Women who think its a good way to lose weight, sticking a feeding tube up there nose to lose weight. A large majority of those affected by Schiz needs g-tubes to survive. But thank you world for making it a new fashion statement and a lazy way to lose weight as we struggle to keep our kids healthy and keep food in their stomachs to survive.

I realize I wouldn't had giving this a second thought if it weren't for Ari, but maybe someone does need to step up and say how wrong it is and there are people being hurt by it.

Friday, April 27, 2012


Thank god its Friday. If only my weekends were filled with relaxing and sleeping in accompanied by a hot bath. I think I need a vacation. My heads all over the place today and I am feeling worse as the day progresses. I wish marriage was in my near future, I need health insurance. I can feel myself slipping into depression more and more.
 Goal for the weekend is to get this blog in order.

                                                   Little miss in the hospital over the weekend

2 week notice

After a rough week of having a sick baby and in and out of the doctor's office and ER, Jesse and I decided its best that I stay home with Ari. I had the privelage of putting my 2 weeks notice in this morning.
 We have been discussing this as an option probably since I came back from maternity leave. We were weighing the pros and cons, going over finances on paper and in our heads, calculating everything we need and the extra to play with. I think we have come to the realazation that if its in the best interest for her, nothing else matters. We can go without as long as she has what she needs and is cared for the best she can be.
 This will be a whole new experience I am both looking forward to and a little uneasy about. I am hoping I am able to find something to bring in more income at home down the road. But I know it is essential I am home with her. Its only a matter of time before work lets me go, might as well put the word in first. Probably looks better then getting fired.
 Since Sunday night Ari hasnt been feeling too great. She slept basically all day, would wake up to eat about 1-2oz, sleep 2-3 hours. Her head turns blotchy when she eats from the bottle. Around her eyes and forhead gets red patches. She was choking on her bottle periodically as well. Her pediatrician said she probably has reflux. Im not sure I buy it. She really doesnt spit up that often, unless shes not burped frequently. She doesnt cry when she eats. Shes 6 months, thats usually about resolved by this time if babies do have it. Tuesday she woke up with her right eye swollen, red, and gooey. Looked like someone punched her in the eye. Her pedi wouldnt see her because he just seen her monday so it couldn't possibly be pink eye. Not sure I understand the logic in that. Also said it could be a cold working its way out. Umm, okay but just yesterday you said she wasnt congested at all, now shes getting rid of the cold she never had...? We took her to the ER wednesday because of her choking when eating. She had hardly eaten that day and of course I was concern. Well we waited 4 hours to be told she may be getting a cold. The discharge summary was how to take care of your irratble infant. And I think the diagnosis was overreactive mom. I was extremely frustrated but too tired to argue. Ari was asleep, it was 6 hours past her bed time, and Jesse and I could hardly keep our eyes open. I have a nuero appointment in 2 weeks. I will be asking if he recommends any pediatricians that have experience with SN children. I realize there wont be any for her DX, but at least have some other understanding other then chalking everything up to a common cold. And yes, maybe I can be overreactive, but isnt that a mother's job?
 I decided not to give her the reflux medicine. At least until consulting the neurologist. Physical thereapy seen her yesterday. Same things as it was 2 weeks ago. Still havnt heard from the occupational therapist that was suppose to set up an appt by now.  I will say she is doing better with keeping her right hand open, as well as grabbing things with it. She does need her legs stretched as well. She cant get her legs up to her head like most babies to to grab their feet. Shes not really trying to sit up yet. She can for a few seconds when she sits on our laps.On the floor she goes right over. So trying to get her to be able to prop herself up. She is scooting on her belly. Its a step in the right direction to crawling.
 I have a few opiononated things I need to get out too,  but that will be later on when I have time at home :)