OVERWHELMED

I can't take this......

I wish her spasms went away!

Do any of you feel beaten up when you see other kids pass their mild stones while your child is being left behind, to the point that it is becoming more noticeable? I do.....

Aliyah is turning 2 this August... She will start daycare and I do plan on throwing a big Birthday for her, and on inviting all of her new friends.... I am planning on buying a bounce house, hire face painters, hire people to dress up as ELMO and Cinderella for pictures, and so much more!

The reason being this might be the one birthday she can pass as a normal child... By three it may be too noticeable and I am afraid the children may be mean to her, and the parents I JUST DON'T KNOW. I hope they understand.... I may not have a chance to throw her a sweet 16.... I didn't have one but ever since I knew I was having a little girl .. I secretly planned her sweet 16, graduation party from High School and College, wedding, children's baptism... EVERYTHING......

Am I losing it? I need more faith, I need to pray some MORE!! I need more prayers for my daughter!!! My heart is aching so much, I need to be strong for her and my 2 month old. But this pain is taking the best out of me.... Why? Why my little girl? why are there illnesses out there? why to earth's little angels? I would do anything to trade spots with her....

I love my baby girl and will do anything to protect her......

I feel like I am going crazy, I can't talk to my husband about this, he has closed himself up about her infantile spasms.... All I know it is a relief to be expressing myself through this blog... I need someone to listen to me.

HER INFANTILE SPASMS CAME BACK!

I knew there was something wrong I JUST KNEW THERE WAS!!!!
Something kept on telling me her "chin drops" were not normal, they were not Paroxysmal Tonic Upgaze they looked too similar to her developing seizures of IS.... So I did what any parent would do, ask Aliyah's regular physician to refer Aliyah to see a chils neurologist in Iowa City for a second opinion....... They booked us for November 27,2011, at the time it was the first week of April. I accepted it and called every week, sometimes twice a week to see if there was any cancelations. LUCKILY last week they called back asking Aliyah to come in on June 8th. (5 months and some weeks before her scheduled appt.) We already had plans to go to Iowa City because Aliyah had an appt to be evaluated for Autism, the evaluating team suggested she did not have autism. (what a relief)


But on June 8th, Dr. Joshi told us what Sean and I were in denial of.... Aliyah's infantile spasms came back. She told us ALiyah's neurologist did not diagnose her correctly, that Dr. Alsayouf did not read her EEG and saw her spasms occuring.

At first I just heard siezures.....then Dr. Joshi said spasms... I was confused ......so I flat out asked her if Aliyah has infantile spasms again....... SHE DID.......... I could not believe it...... my heart dropped. I felt like my daughter was lied to, valuable time of healing was taking from us.....


My family is having a hard time taking this in.
We started with the steriods again, increased Keppra and will eventually take away Topomax... Dr. Joshi said Topomax hinders cognitive developmental skills and speech/communication learning. Aliyah was on the max dose no wonder she doesn;t know simple command or who her mom of dad are.



Please pray for my little girl..... we need prayers.......... I want my daughter healed....