One week off ACTH

Yesterday marked the first week Oakley's been off the ACTH injections, he's had a good week, even though he's been having tummy issues, we've tried every thing we can think of, he did manage to get a little out and as sore as it was for him, I think he feels a little bit better. Shame it's been a rough 2 days for him as far as this constipation goes, will bring it up at his doctor appointment this afternoon, and hopefully he can help us even though he's only a paediatric neurologist, he must know something. 

Oakley hasn't been completely happy today, little bit on the grumpy side, but now and then we'll get a smile out of him. His sister of gets the biggest smiles and loudest giggles though, so Mommy is a little jealous, but their bond is so special, something I know I'll cherish watching every day. 

Today Oakley was in his walking ring, and he is getting used to it, he's starting to go forward, so Jason called him to come down the passage, and he did, he walked from the lounge all the way down the passage...was so proud of him. Once down the passage Jason put him in our room, and he spotted his Orange Octopus in the bathroom, and he wanted it. So we put it on the wash basket and encouraged him to go and get it. It took him a good 5 min of figuring out which way to go, he did a couple reversing movements, and then forward movements, and then some side movements. Then he just stands there staring at the octopus, willing it to move to him. It was a ''stare down''...he then turned to us and looked at us as if to say ''come one Mommy and Daddy give it to me please'', eventually he got into the right position and walked towards the wash basket and picked it up. We were so PROUD.....we clapped our hands and shouted HOORAY and WELL DONE Oakley...such an amazing moment to watch. He wanted something and he went for it, he's definitely a fighter. Such a proud moment for us to witness. 

At 3pm we went to see the Paediatric Neurologist, it was just for a check up to see how Oakley is doing. We walked into the office and Oakley gave the doctor such a big smile, which the doctor was so happy to see. The doctor then decided to play hide and seek with Oakley and Oakley was in his element, because he loves hide and seek, so there was lots of smiles for his Doctor. The doctor asked us how he is doing, so we told him since being on the ACTH and since stopping we are amazed how much Oakley has just come out of himself. How more alert he is, how he is responding to things around him, how he is playing and doing things that a normal 7 and a half month old baby should be doing. He's reaching all his develop mental milestones, and that to us and to the doctor is the main thing, and that he is progressing so we are all happy. The doctor is very happy with how Oakley is doing. He said that his brain is normal and that he's responded so well to the treatment after only a few days, and that's a good sign in his eyes. So we are happy. We do have to see him again in a months time for another follow up to see how Oakley is doing and then to hopefully start weaning him off the Keppra, and then eventually the Epilem. So for now we carry on as normal, we have been told to stop the antibiotics, so that's one less medicine for Oakley thank goodness, because giving him medicine is starting to become a mission, he won't swallow them, he'll pool them in his mouth and just lie there, and you can't pick him up because the medicine will just drool out the sides of his mouth, he's figured us out and is showing just how clever he can be...little monster. :) 

All in all, the doctor is happy. He says no EEG is necessary just yet, so that's a good thing, no EEG glue yay! We did ask what we must do if we notice anything ''seizure'' like happening. Just to be on the safe side, at least we'll know what to do. He said we must just let him know, and if something does happen we'll do another round of treatment, but for now everything is good, and he's happy with Oakley's response to the treatment. He said that Oakley's IS is idiopathic (no none reason/no underlying problem), which in IS it's on the good spectrum side, and that if there are no seizures/spasms then there is no Hyppsorithmia, which is a very good thing. So the fact that he's been off ACTH now for a week, and there's no signs of seizure/spasm like symptoms it's a good thing. That news was a relief off of our shoulders, and hearts, but we will still be on the edge of our seats as the days go by but we will forever be grateful for each of those days. Each day is a great day without any signs of IS, lets pray and hope it stays this way forever. Otherwise Oakley's doctor has been an amazing doctor, and we are ever so grateful for all his help in treating out little boy. Although it's been a long process for us, and we've had to deal with a lot over these past 3 months, we are so glad we've been pointed in the right directions, each direction leading us to new answers, new people, new ways of helping out precious boy, and for that we are very grateful. 

Oh and as for his tummy, and being constipated, we were told we can use Lacson every day to help him soften the stool so hopefully we get him to pass some sort of package soon. Poor kid. 

So for now we just keep praying and being ever so thankful for every precious little moment our little boy blesses us with. One day at a time.....

We got home and he was just tired, so he had his bath, and went to sleep. I then woke him up for his medicine, which he was not happy about, but had to be done, and has gone back to sleep. 

Tomorrow we celebrate ''Father's Day'', Jason's first father's day with 2 kids, it's going to be a special one. Looking forward to so many more memories to come. I love my little family with all my heart, and I feel blessed to be their Mother. <3 

My beautiful pendant of my kids names from my loving husband - A button for my little baby button Oakley and a beautiful flower for my beautiful Petal. Always in my heart. Something I'll cherish forever.