Where Has My Sweet Gril Gone?

Oh, Presidolone, how I loathe thee! Seriously, I hate this medication. It has taken my sweet little princess and turned her in to the evil step sisters, worse than the evil step sisters on Cinderella! To top it all off, Sophie is teething and is just inconsolable!

Speaking of Sophie, I hear her waking from yet another nap. It seems that all she does is EAT (she has doubled her food intake), sleep, and cry.

On Friday, August 3rd, Sophie and I are headed back to U of M Neurology for another EEG. They are going to see if the steroids are working. Please pray they are! Even if they want to continue her on steroids, I am not going to let it happen. There are other ways of treating it, and if need be, we will take a different course.

Sophie had a follow up at her heart doctor 2 weeks ago and he said that she is extremely close to missing the opportunity to close her ASD with a device. He is scheduling her surgery for August 23rd in hopes that Neuro will sign off on her. If they don't, I am sure we will be at U of M so Sophie can have open heart surgery.

So, I ask this from all of you (because I have a friend that told me I needed to. Since she reads this, I need to listen) please be in prayer in the following ways:

The meds are working and Sophie's EEG has improved. With that, pray that because of the improvement she will be developing more mentally as we move forward.

That we are able to have Sophie's surgery in Toledo on August 23rd using a device. Pray for all involved. The nurses, ALL the doctors, everyone.

Pray for my sanity. I am truly closing in on my wits end. I am not sure how much more I can take of Sophie just being miserable ALL OF THE TIME!

Pray for Dan and I also as we are starting to get pissed off when people update their FB status with FML (F*** My Life) all because they have a flat tire, or they say they are "special ed", or "retarded"  because they did something stupid. Last time I checked Special Ed doesn't mean stupid.  I can tell everyone of a little girl who has had a pretty crappy start to her 16 months of life, yet she still puts a smile on her face, when she's not on steroids that is! :) I guess we just need to let it roll off our shoulders because we know that we just can't fix stupid people!

Also, we go to court on August 13th for Sophie's SSI. We were denied the first time. I believe they are going to deny us again because they think we make too much money. Seriously, too much money? How about the fact that I can't even take my child to a day care center because they don't want the risk that she brings. Or, I can't work a full week of work because I have to take her to several doctor appointments. Funny thing is, they just look at your hourly rate, not the expense you have of living!

Ok, now that I have that off my chest. Thank you all for the support you have shown my family as we are moving along this thing we call life. I am truly blessed to have all of you on Sophie's team, rooting her on, rooting me on. With all of the things we have against us, we have some pretty amazing things going for us as well. 

I love you more than you know!

Go Team Sophie!

Surgery Cancelled....Again!

As you know, we were called to go to U of M on Friday, July 6th for a follow up for Sophie in Neurology. They wanted to do a 2hr. EEG so they could get a better read as to what is happening in Sophie's brain. The results, to say the least, we unexpected. Unexpected because we have been giving her anti-seizure medication and she had been doing well.

Sophie has Hypsarrhythmia. The definition, taken from Wikipedia is below:

Hypsarrhythmia is an abnormal interictal pattern, consisting of high amplitude and irregular waves and spikes in a background of chaotic and disorganized activity seen on electroencephalogram (EEG), frequently encountered in an infant diagnosed with infantile spasms, although it can be found in other conditions. In simpler terms, it is a very chaotic and disorganized brain electrical activity with no recognizable pattern, whereas a normal EEG shows clear separation between each signal and visible pattern.

Exciting, right! This is apparent when Sophie is awake and even more so when she is sleeping. You should see the EEG, it isn't pretty!

So, what do we do from here? Great question! Dr. Dang (works with Dr. Leber) has put Sophie on a HIGH dosage of steroids which is supposed to give her brain back the structure that it needs in order for Sophie to develop mentally and start doing the things she is supposed to, even with MWS. We will revisit in 1 month with another EEG and clinical follow up.

In the meantime, Soph is on this medication 3x a day along with an antibiotic 3x daily every M,W,F as well as medication for acid reflux because her steroids will give her more acid. Just what Sophie needs. Sophie has been more irritable and it has only been 4 days. What we need to watch for is that this medication attacks Sophie's immune system so if you are sick in ANY way, please don't ask to see my child. She absolutely can't be around anyone that is sick, even if it is JUST a runny nose. Just a runny nose to Sophie on this medication can result in much worse for her. This medication can also cause a rare lung infection, which is the reason she is on the antibiotic. 

If you recall, Sophie was on Keppra, which is an anti-seizure medication. The prescription was written by the ER doc at Bixby and we dropped it off immediately at CVS in Adrian. Sophie has been taking this medication for 1 month and on Friday our doctor realized that she has been getting 10x the amount needed!! Needless to say, but I am going to say it anyways, CVS in Adrian has been overdosing my baby for 1 month. They completely messed up her dosage and all they have said is, it happens, we are sorry! Really? WTH? You could have killed my child and all you have to say is "It Happens"? Luckily, for Sophie, this medication is what they consider a "safe" one and all of her levels have come back normal. We currently have to gradually take Sophie off this medication. Sophie has enough going on that is out of everyone's control, the last thing she needs is for someone else to cause issues for her!

With all of this said, Sophie's heart doctor, Dr. Butto, has cancelled her surgery once again. He believes that Neuro has the lead and once this is taken care of we will reschedule her surgery. This pushes Sophie even closer to having Open Heart Surgery because our window of opportunity keeps getting smaller and smaller!

Sorry, this is a lot of information. Once I started, I couldn't stop. Besides Sophie being irritable she is fantastic and she even has her 1st tooth! We were so excited, I mean it has taken her 15 months to get it. We were going to celebrate with Spaghetti, but Sophie didn't want anything to do with anyone! Ah, this is just for a month, right?