encouragement

Thank you for your encouraging comments. Yesterday Fergus did really well. He was easily calmed throughout the day and he had periods of good, deep sleep. He was so relaxed when I saw him that his positioning was different than usual (he usually looks to the right, has one foot flexed, the other pointed, and his hands curled up over his chest). I saw him sleeping facing the left, both feet just slightly flexed and his hands were more open and to the side.

Overall, Fergus is doing better. It is hard for us to see that from day to day, especially with the bad days that are so hard to get through. He is more easily calmed down and doesn't overheat quite as much. He still sweats profusely (but he's not hot), arches his back, and tightens his limbs. I read through a list of things to help typical dysautonomia the other day. Almost all of it applied to Fergus: bending at the hips (sitting up), cool temperatures, quiet atmosphere, dim lights, soft voices. Unfortunately, he is in a nursery where noise can only be controlled so much. The doctors think that in the long run it is for the best (so that when he is home he won't freak out at noise) but it is harder for him now.

I have asked the medical staff about hyperbaric oxygen treatment chambers for Fergus (on suggestion from my niece Chrissy DeCarlo). They have sent other kids to be treated from Ranken Jordan before so I hope that Fergus will also, if it would help him. It is a treatment that forces pure oxygen into the body, helping to heal areas of the body that have been oxygen deprived. Check out www.hugs4ndc.com for more information.

I have also asked if there is any chance of chiropractic care since it always makes Fergus more comfortable. His back is still not totally straight but it looks so much better. We are working on his back every time we sit him up or position him in bed. He loves to have us put deep pressure on his lower back. We are now able to touch most of his back without him crying and freaking out. He still doesn't like it but he is calmer about it. There is a possibility of a flexible back brace that would help to hold his back in a normal position. The doctors aren't sure that it would help as much as sitting him up and helping him relax.

He doesn't like to stretch out his fingers straight unless his wrist is bent down. He really gets upset if we work with his wrists, fingers, and arms. When he gets upset, his heart rate goes up and if he won't calm down, then we have to stop. The occupational therapist is making new splints for his hands. Fergus will not allow us to put him in splints that keep his arm, wrist, and fingers straight so the OT is trying to figure out what he will tolerate that will keep his hands as flexible as possible. She hopes to eventually stretch his hands out straight.

One thing that we have been able to do lately that calms him down is massage. When Fergus arrived at Ranken Jordan, he would not tolerate touch. Now, if he starts to get upset, sometimes rubbing down his legs and giving joint compression calms him down. Joint compression is when you push the joints gently together. He loves it. Massaging his arms is still difficult but we are working on it.

Fergus also doesn't like to be in the same position for too long (unless in a very deep sleep). He tends to arch his back, cry, and possibly sweat until we move him around. One of the latest things to help is soft, relaxing music. Maybe it helps to overcome the noise of the nursery.

For Fergus, please pray:
*for regular deep sleep
*no more storming
*for a straight back
*complete healing
*looser joints

For our family, please pray:
*for employment for Matt
*for a home for us to stay in while here (which will be at least one year)
*for us to see our kids soon

Again, thank you for your encouragement and prayers. We feel like we are on waves tossing us around. You are a lifeline for us.

esther