I had a meeting with a social health person a couple weeks ago. I had Hewitt and Titus with me at the meeting and had the opportunity to share with the woman, what we've been going through with Hewitt. She had the opportunity to witness what we've been dealing with (he was having a lot of drops that morning). She was very sweet and about a week later I received a lovely message on my voicemail from her. She said she couldn't get my adorable little boy out of her head and she wanted to do something to help us. She made a referral for a public health nurse to come meet with us. She said the nurse would be available to help us find our way through the system.
So, today we had a public health nurse come to our house. I am so excited that she is now a part of our lives and this mess we're in. I think her services will help us navigate through the many elements that I often don't have time to pursue (or knew they even existed) - the medical system, support groups for our family, disability insurance, getting him into a headstart program, etc..she is available to help us be an advocate for Hewitt. The meeting helped affirm our feelings about our neurologist...that we as parents have a responsibility and if our Dr. isn't willing to listen to our concerns then we need to seek care elsewhere. Her service is provided free of charge and she is available to help us with whatever we need help with! I feel so much better knowing we have one more person in our corner that has dealt with the medical system.
Medically, this hasn't been a great week for Hewitt. His drop seizures have decreased since we decreased the dose of his 3rd med (depakote). But, his absences have increased by a lot. The last couple days have been really frustrating to watch him be so out of it for such a large portion of the day...we continue to struggle knowing when to administer his emergency meds. We are looking forward to seeing a new Dr. on the 21st that will give us a more clear understanding of how to handle these episodes. The nurse today said she would give a call to Children's and try to get us an appointment even sooner. This would be great as we would prefer not to have to go back to the neurologist at Mary Bridge.
Hayden speaks at a camp next week for their Jr. Highers and we will all join him. I hope this will be a great time to just be somewhere else and be distracted by the outdoors, new faces and some time together as a family. We would appreciate your prayers for the week. For Hayden especially that God would just give him a clear mind and that we would be a joy to have along and not a big distraction. We think it's a great ministry opportunity to be there as a family, but sometimes can get so caught up in family that it's hard to reach out! Please pray for a balance regarding that! Thanks again for your prayers, your encouragement and your love! This would be a lonely road to travel alone and we are thankful for the family, old friends, and new ones, that God has provided along the way.