Thursday, January 10, 2013


We're often wondering what is going on inside Jacob's head. What is he thinking? What does he feel? What does he want to tell us? Sarah loves when I am Jacob's voice. Our Jacob loves to be with his sister. He also loves to "boss her around". He always tells her what he wants her to do. There is also nothing that can stop our Jacob. He can do anything, and he is up for anything! That is our Jacob.

With the help of Jacob's speech therapist, we're exploring ways Jacob can better communicate with us. The goal is to give Jacob some sort of communication device that he can independently use to communicate with us. It is a big goal for Jacob, and it might take us some time to get there, but it is so worth it! We have for a long time used Jacob's eye gaze to make choices, but we're starting to think that a button might be better for Jacob to indicate what he wants. We have also found out that he likes to make choices with his foot rather than his hand! As we're working with Jacob's speech therapist, we will also consult with a speech augmentation specialist at Children's and through the school district. We're hoping they can guide us further!

Jacob loves his switch toys! He loves to be in control of his bunny and cat, and have them move when he wants them to move! It is so fun to see him smiling and being so proud!

Another big goal for Jacob has been to do some weight bearing again. Our boy has not put any weight on his legs for 3 whole years! That is how long it has been since Jacob was in a stander or walker. The thinking is that weight bearing together with Pamidronate treatments are the two best things to improve his osteoporosis. We received Jacob's supine stander months ago. The first time we put him in his stander, we thought he would break a leg! He simply didn't have enough support for his legs. We ordered new AFOs for Jacob, and then the long hospital stay and the holidays got in the way, but yesterday everything came together. Jacob got in his stander for the first time! This is quite the project! We're starting Jacob in the stander for 15 minutes each day. It doesn't sound like a big deal. Well, to get Jacob ready for the stander definitely takes some time. We also need to be two people to get Jacob in and out of the stander, since he needs to be supported both in his upper and lower body as we're strapping him in. I think that Gemma almost got more of an exercise than Jacob as we were embarking on Jacob's 15 minutes of standing today!

We have also started cranial sacral therapy for Jacob. With a soft touch his therapist releases restrictions in the soft tissues that surround the central nervous system. She is getting Jacob's spinal fluid to flow better. We have noticed that Jacob is more alert after each session, and it is also supposed to increase his immune system.

Jacob's colitis is in remission. To be able to write that sentence makes me so very happy and relieved. There were times before Christmas that I thought we would never ever get his colitis fully under control. Weighing each diaper and calculating fluid replacement at home. Accidents happening each day. Today, Jacob is in remission. The one thing we know in living with colitis is that the disease will flare up again. Noone knows when, and sometimes that just makes me even more thankful for where we are right now. We're still weaning Jacob off steroids, which will take another 1,5 months before we're fully off.

The same goes for Jacob's seizures. Jacob has no clinical seizures at this time. We are not using rescue medications daily or multiple times a day. It is a good feeling for us all. We do feel that Jacob is more obstructive right now, so we will discuss the bi-pap with his pulmonologist this coming week. It might be that we need to introduce the bi-pap at night again to make Jacob's overall breathing better. We have had a great 1,5 years without the bi-pap, but it might be time to give Jacob some support at night again.

Going into the new year and a flu season that is worse than in many years, we're hoping that Jacob can continue to stay at home healthy, so he can continue to explore!



  1. Just got caught up on all Jacobs posts. I am thrilled to hear things are going well!! So very happy you were all home for the holidays together! Sorry about you Znd Jokim getting sick but glad Jacob didn't catch anything. Great pictures of the past month!

  2. Thanks for catching up! I hope you all are doing well as well including Kaci! I hope you all will have a great year!

  3. Good luck with the stander! It's a lot of work, I'm sure it will help. I feel better to know someone else experiences everything I do on a daily basis. We really do extraordinary acts each day, don't we? Those baby pictures of Jacob in your latest post moved me to. Looked SO much like Dermot when he was younger:). Wish you an uneventful happy rest of the winter.

    1. Sue, thanks a lot! I had forgotten how Jacob looked back then, so it was nice to pull out those photos again! I would love to see some photos of a younger Dermot as well! The stander is a lot of work! Jacob is only in it for 15 minutes per day, but getting him ready, and taking off everything after, it is a 45 minutes task! We do need to do it for Jacob's osteoporosis though, so it is very much worth it! I hope you're having a good winter!