Tuesday, November 04, 2008

brief blessings

Ok this post is my raw thoughts and feelings as Jennifer says. It's not to start a debate with anyone about any of these things. It's just my thoughts and opinions that I want to share. I need to share.

Every now and then hidden within all of Abe's seizures we get a brief smile. They seem to be real smiles and not really seizures. We have been debating that some as of late. I just thought I would share a couple of pictures that I was able to get. It's time like these that I am reminded that my baby is still in there some where though hidden behind these nasty things. I refuse to believe this is the new normal for Abe. I am reminded that if he does it once he will be able to do it again once the seizures are taken care of.

Mike's friend asked him today how things were going and MIke's words were the storm rages on. It does. It's hard. It's rough. The hardest part today is that we were hit with the realization that it's not going away tomorrow. This is another one of those on going challenges. The good thing is we have a plan. I want to share this with ya'll so that I will have an account of it and so that ya'll will know how to pray. I will continue to pray and believe that one day Abe will be seizure free however I will be realistic.

After going over everything with Mo we have decided to continue the Orapred for a little longer. Tomorrow morning we will increase Abe's Topomax. Friday we will discuss the possibility of decreasing his Vigabatrin. This is the med from Canada that was supposed to be his miracle drug. If decreasing that works we will then begin decreasing Orapred. We will rotate decreasing both of these meds until he is off both of them. Our next steps will be Depakote, Keppra, Keto diet and/or Vagus Nerve Stimulator (VNS). These all can have extreme side effects so we will discuss these options in depth before making a decision.

Next week Abe has his swallow study. Please pray it's negative. If it's positive for aspiration then we will have to do the g-tube. It's not what we want for him but we do want him to be safe and if that's what it takes then ok. I would like to have a peace about it though. After his swallow study he will have another EEG. Then we will meet with Mo and Dr. Holt to discuss our next steps.

I know we ask a lot from ya'll in the way of prayers but if you don't mind would you please add one more. My milk supply has decreased by half in the past 3 days. I know it has a lot to the fact that he cannot nurse right now, stress, no rest and they fact that I am not eating right. I have started taking Blessed Thistle, Fenugreek and Brewer's Yeast in hopes of increasing my supply. Please pray that this works. I would love to be able to give Abe my milk until he is at least one, longer if possible. We know this is important especially since Abe doesn't have an immune system, cannot get immunizations (even though I still say they had a lot to do with his infantile spasms and seizures) or a flu shot. But I was reminded today by Mo that I am a good mother. I have made it almost 9 months with giving Abe my milk no matter what it took. Not patting myself on the back but I needed to hear that. She said that if I am not able to continue to pump he has had at least those months. I did tell her that I have been seriously praying about this. It is taking a lot out of me by pumping and then feeding him but it's something that I really want and need to do not only for him but for myself. I think that if he ends up having a feeding tube I will rethink it. Also that will help with our decision about doing the Keto diet because he will not be able to have my milk if that's the case. So peace - I need prayers for peace please. It's not as easy as saying ok I can stop. It's the fact that he is my last baby and so much more than that.

I wish all this was easy. I wish this wasn't another one of those long journeys for ya'll to travel along with us. However I am thankful that each of you are there with us as we go through this. Thank you for lifting us up and carrying us through. Thank you for your emails, cards and especially your prayers.


daniel said...

I'm so happy he has his smiles back, whenever they come!! That has been the most cruel with Aicardi, I think. Evelyn was JUST starting to give us some really good smiles when the spasms kicked in. Now over a year later, we'll get what we know are happy faces - and they are undeniably cute - but I still long for an out-and-out "toothy grin". She's coming close, and she'll get there, and I wouldn't trade her smiles away for anything - it's just if there's one thing that's cruel with IS, it's that.

Shanna Grimes said...

Hi, I found your blog thru the IS forum. I love the smiley pics. So adorable! I have 3 kids with special needs, one of which has IS. Looking forward to reading more of your blog.

Take care,