Eli had his follow up EEG today. His neurologist said everything looked perfect. All brain activity is normal. Woo hoo! Praise the good Lord. He will be off all medication in two weeks. There is no plans for a return visit to the neurology department unless the seizures return. Infantile Spasms can re-appear but we will remain hopeful that the seizures are a thing of the past forever…Soon to just be a distant memory. Eli is especially happy not to have to partake in any more EEG’s. He is not a fan.
I am so thankful that this whole process was relatively easy compared to some of the horror stories I’ve heard about. Infantile Spasms are very hard to treat sometimes. We are lucky that we caught them super early, treated aggressively right away, and got the whole thing under control within 3 weeks. I give thanks to the doctors who supported us throughout this process, most notably, Eli’s pediatrician Dr. Partridge. She took me serious from the get go. I am forever grateful to have such an amazing professional support system in Eli’s corner. Go team Eli!!!
It is awesome to see him reaching so many milestones now. He rolls over from back to front and from front to back. He can sit up unassisted for a couple of seconds. He reaches up when he wants to be held. He can sit in a high chair, a Bumbo, and an activity jumper. He may be a little behind at reaching some milestones but he is catching up at record pace! He is a determined baby that is for sure. Eli also had his first taste of rice cereal on Mother’s Day. He definitely seems to enjoy it!
Next we’ll try fun stuff like applesauce, bananas, and squash (those were Cody’s favorites)! I’m excited to have my baby back!!!
Thank you all for prayers, love, and support. This road would be a lot harder to travel without so many of you routing us on! I am so, so, so proud of our boy for getting through another challenge. He inspires us daily. As always, we are truly blessed.
It has been two weeks since Eli’s last seizure. I am finally starting to let out the breath I’ve been holding. We started weaning him off the ACTH last Friday. His dose was drastically reduced. He was at a high dose of 0.6ml and the first stage of weaning dropped him to 0.13ml. Now he’s at 0.06ml and will go down to 0.04ml. He will be done with the weaning process next Friday. He is scheduled for a follow up EEG the following Tuesday (May 14). He never did have an EEG before starting the wean. The neurologist was confident that the EEG would look good while on the ACTH since he hadn’t had a seizure in over a week. The less EEG’s we have to do, the happier Eli will be. It’s not a fun process for him (or mommy and daddy). Thank goodness he’s a baby. This whole process would be next to impossible with our toddler.
I am also ecstatic to report that Eli’s personality is back to the happy, carefree baby he was before the seizures started. He smiles and plays and laughs and babbles. It is so wonderful to see our boy shinning brightly once again!
This past week he turned 6 months old.
I am not sure how this has happened already. At times, it seems as though the days drag on forever (usually during a hospital stay) and other times the days, weeks, and evens months, go by at lightening speed. Crazy to think all that he’s been through in 6 short months. I’m hoping that all of the “icky stuff” (to quote my almost 3 year old) is behind us now, God willing.
Chuck and I celebrated our 6 year wedding anniversary this past weekend. Our lives are certainly different than what we had planned when we first said “I do” but I wouldn’t have it any other way. Life’s challenges seem less challenging and the triumphs are more triumphant with my best friend by my side. I love this quote (by Winnie the Pooh!) – it sums up my feelings the best: “If you live to be a hundred, I want to live to be a hundred minus one day so I never have to live without you.”
Thank you for sharing in the love of our family, and most importantly, loving our little boy(s). ❤
Look what’s back?! His beautiful smile!
Eli has been seizure free for one whole week! He’s still not the Mr. Happy Boy he usually is, but I’ll take a few smiles and the occasional giggle over irritability and crankiness any day! It’s really interesting…He’s still on the high dose of ACTH yet he’s a totally different baby now that he’s no longer having the seizures. Leads me to believe it was the seizures causing his unpleasant behavior and not the steroids – or maybe now that the steroids are actually working the negative symptoms subside some? He does still have a very “swollen” face (known as moon face) but I think his chubby cheeks are adorable!
I am so thankful that the ACTH finally started to work, just when I was ready to give up. I have read so many heartbreaking stories where the search for the right medicine(s) is exhausting and never-ending. I thought that was the road we were heading down. I truly was starting to lose hope.
Eli still has to get through the weaning process so all of your continued prayers are appreciated. He’ll have another EEG at the end of this week or early next week. If the test shows normal activity has returned to the brain, we will start the wean off the ACTH. That should take about 3 weeks. I am not sure of the maintenance plan after that. Usually, children stay on an anti-seizure drug (there is a wide range of treatment protocols as to the length of time – depends on the neurologist I guess!).
Thank you to all who have kept the faith. Your love and support is invaluable. ❤
Today I come to you with good GREAT news. Eli has not had a seizure since Tuesday night at 10pm – exactly 48 hours ago!!! I was hesitant to share this news because I didn’t want to get your hopes up but, I am going to stay positively optimistic that we have started stopping the seizures. We are nowhere near the end – yet. He will stay on the high dose of ACTH for one more week. If he stays seizure free he will have another EEG at the end of the week or beginning of the following week. If that is clear we will begin the 3 week weaning process.
I am starting to see some of his personality return. He smiles, occasionally. He giggled once yesterday. I cried tears of joy. Even if it’s just a little glimpse, I am so happy to have my baby back. He’s a little bloated and has “moon” face (puffiness from the steroids) but he’s still the cutest boy in the world to me. ❤
Thank you, thank you, thank you for your continued prayers. They are working! It is with the outpouring of love and support we’ve received from all of you that has kept us strong. We WILL beat this!!!