I know-- it's been a long time since I posted. My baby on steroids has been keeping me plenty busy. She is fussy and swollen and she hardly sleeps. The steroids make her very irritable and on top of that she is cutting 4 new teeth at once! We are so glad we only have 17 more days on these injections.
As hard as this ACTH has been on us, we are thrilled that we tried it because today marks 5 weeks of seizure freedom!!! Ruby is super chubby and crabby, but her blood pressure has been okay and her bloodwork, so far, has not shown any sign of infections. So, we are thankful that so far God has spared us from further complications. It is hard to believe that only 5 weeks ago Ruby was having 30 seizure a day and now we don't see them at all; what a blessing that is. I am still not completely convinced they won't come back; it is hard to be at peace about that after seeing them everyday for 7 months. But, I feel God's hand in all of this and I am trying to trust in Him and not worry about the future. He has been faithful and I know He will keep holding on to us, no matter what comes.
She had another EEG this past Monday and I haven't heard about the results yet, but I am assuming no news is good news. If they would have seen seizure activity on the EEG I think they would have called by now.
We also met with a new physical therapist on Monday. He seemed very knowledgeable and he is going to treat Ruby some this summer. We already saw some slight improvements after the first session so we are excited to work with him.
Thanks for your continued prayers. The posts might continue to be a little spread out until these steroids are done. Hopefully, when I have a healthier, happier baby I will have more time to update more frequently.
4 comments:
Praying that Ruby continues to show improvement and that these next few weeks go by quickly for you!
Kelli, so glad to hear that Ruby continues to be seizure free! Praise GOD for his healing power!! Praying you all through this current trial with the medication side affecs and that at the end, you receive the sweet reward of your precious Ruby's happiness!! :)
I can only imagine how busy you are kept with an irritable baby and her baby brother! ;) I will pray that as you finish out the steroids that she will continue to be seizure free and will remain seizure free when you kick those steroids OUT of her life! I'm glad you found a physical therapist that seems like he may be able to help Ruby this summer. :)
You are still (and always) in our prayers! We think about you guys a lot.
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