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.
  

        

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....
http://www.godvine.com/Mother-s-Inspiring-Video-About-her-Blind-Baby-Boy-1484.html

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.

PS and TGIF

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 :)

Feeling like crap

Work can be especially hard for me, mostly because I have too much time to think. Night shift was dreadful. I spent most of the night crying and researching. Researching what really, im not sure. I am conviced the Schiz moms and myself know more then the physicians and anything I will find on the internet. Dr google isnt going to tell me my babys future.
 I havnt had the time to get her papers into disability, her research forms for the Welsh lab in Boston, or the application for a service dog. I need a good solid day of not having to do house work or watch Ari ( yea right ). Life's busy and stressful enough with a baby without adding that she has special needs. Even if she isnt showing it yet, I am a constant mess.
 The topic of make-a-wish came up. Unfortunatly she has to be at least 2 and a half. Although I think its mostly for trips, which I would want her to be older anyhow.
 I also think I need to look into some counseling or meds. I feel like I am losing my mind. Sometimes I feel like too, as stupid as this sounds, that Jesse somehow blames me. I mean, I feel responsible sometimes, I carried her. I must somehow been at fault right???

 Arianna has to go for blood work this saturday. Its one of the worse things and im dreading it. We have to go three more times for her endocrinology blood work. There are 6 different orders and they can only take so much out at a time and you have to wait a certain amount of time to get more drawn.

 The talk of having more kids is constantly thrown around. I would idealy like to wait until shes at least 2. I hear by 2 years old you will have a good idea of what her future will be like as far as what hardships she will face. I would feel incredably quilty not giving her all of my attention. I feel bad enough I am not able to be with her everyday. I think shes going to think the baby sitter is mom. Which I guess is completely rediculous.
 They are also not sure if its a genetic condition. We go back in July to CHOP ( my favorite place ) to get results. There is so little know about it. Could be environmental, which kills me day to day wracking my brain on what I did the first month or two. What I could had breathed in or was it because I crossed my legs and she didnt get enough oxygen? Was it because I painted my nails and inhaled the remover? Was it because I didnt know I was pregnent until 8 weeks and I was cleaning and smoking and eating crap?
 They dont know exactly what week of gestation it occurs in. It could have been an infection, but my CMV came back clear. I wasnt sick the entire time.
 Could also be caused by a stroke. Which is what they initially thought thats what she had on the first U/S that showed the shadow.
 Her medical records from Women and Babies said it could be mild Schizencephaly. Our neuro refers to it as it being very significant. They didnt even tell me Schiz was a possibility at the high risk doctor, even though it was in my chart that it could be. I am pretty upset about this. But I guess it doesnt make a difference now.
 CHOP said chances of it happening again is 2 percent. That was at the first visit. Last visit, its going to depend on if it comes back as a genetic mutation. If it isnt, I am going to be even more depressed thinking I did something. If not, I am going to be so worried about having another baby. The genetic counselor said some genes have been identified to cause Schiz, but its the other type....I forget what it is. Also if that one causes the SOD they dont know either. Its all too confusing for me.
 With any chance of it happening again im not sure what Jesse and I will decide. For me, its back and forth. I love Arianna no matter what and I would love my second if she had Schiz just the same. In that respect, doesnt matter. But, I know how devastated I am now. And what I went though hearing it and going through it day to day. Will Ari have a lot of disabilities later in life? I dont know, but I wouldnt want my babys to go through it, so knowing thats a possibility, I dont know if I would chose to have another. But, if it happens I get pregnant I wont be upset :)

Still dealing

I decided not to get the hand splits for little miss. There concern was her keeping them fisted at night and having them stay that way. She doesnt do this however ( CHOP drives me insane ) when shes relaxed her hands are always open. Its A LOT better now through-out the day as well. She is grabing and playing with toys. Her right hand I have to help with a little more but I dont think its anything that requires a splint.
 On the note of "average" baby stuff, she has a new sitter which we love love love. So instead of trying to get her into she special needs daycare, I think Meg will be more then perfect unless she ever develops more complications she wouldnt be able to handle. Also, need to get on this sleep training thing and stick with it. Just kills me to hear her fuss or cry. But its killing Jess and I to be up late trying to rock her to sleep. I think it just disrupts her as well.
 I would love to be able to stay home with her. Ugh, just dont see it ever beeing possible.
We did get her into seeing PT and OT every other week. Other then that nothing crazy coming up for a while. This month has been quiet as far as doctor appointments go.
 Oh, I dont think I commented on the EEG, it is still clear of seizures :) Thats my biggest fear. I know I am going to just die to witness that. We are so blessed that she is doing so good.
 I had asked the neurologist about things taking a turn for the worse. He basically said its not a degenerative thing where she will get worse necassarily, but that she may not be able to learn to do things like talk, walk, ect. I know it will hurt the most if I never hear her call me "mom".  I am a part of a group of other Schiz moms and I dread asking if its a good sign shes doing so well , meaning do you think she will learn. I know no one has the answers to her future, and I guess I dont really want to know. Or I should say I dont want to hear, what I dont want to hear. So, for now just trying to enjoy every minute and keep faith in my heart that she will be just fine. This is the hardest thing for me from day to day. Not knowing if my baby will be okay. I know I been depressed. And I know I been moody, bitchy, snappy, ect. I know its taking a toll on Jesse and I. He puts up with me though and we push to work through it. I dont think anyone but a mother of this ( or mothers in general ) would fully understand what I am going through and how your heart is constantly hurting even though nothing is "wrong" at the moment.
 We are all going out to dinner for my grandfather birthday tonight. Will be a nice night "out". She does very well wherever we go. She is teething though which is making her exceptionaly fussy. God, they get big too fast. She will be 6 months in 2 short weeks.
                                                                  Little miss sitting up ready to eat

Ari and mommy

Baby girl out soaking up the sun

Daddy's Girl

Arianna in her Easter dress

Her new best friend Loki