Update on Dylan

Dylan had his repeat swallow study today. He did much better, enough that we were able to remove the NG tube, but he did not pass with a 100%. Dylan still has problems with thin liquids so all of his bottles will have to be thickened for a while. He will also be starting some outpatient therapy to help strengthen his throat muscles, 3 days/week. The thought is that the reflux meds are working to heal his throat but muscles are still weak from damage. While the medicines continue to work the therapy will hopefully speed healing process along. He will have a 3rd swallow study approximately 3 months from now for follow up.

The most important thing is that the tube is gone and he did better!

Thank you all for your thoughts and prayers.

Thoughts

Normally we use this blog for updates on the kids but not tonight. I (Madelyn) am really missing my father tonight. Some days it is as if he has been gone for quite a while and some days like today it feels as if he just died. Now when I say just died I mean died while he was still able to talk to me and be my daddy, not the way he was the week before he died, in the coma. I want to call him so badly my heart feels as if a piece of it is literally missing. Luckily, I can still somewhat imagine his voice which is good but that also makes it worse. I want to call him, hear him call me Madeloonie and be annoyed that I am bothering him and that I have not made enough lemon meringue pies for him. I also would love to get a hug from him and as much as I hated getting gizmos from him I would even love one of those right now. Let me explain since he was a police officer he knew about pressure points and a gizmo was him getting the pressure point in my neck/shoulder area. It has been almost 2 years since we found out he was sick and very quickly after that I became the parent and him the child. It has been a little over a year since he passed away. I don’t dream about him as often as I used to but I still do sometimes. In my dreams it usually starts off with him being very healthy and wondering why I haven’t seen him for so long and then it quickly changes to him being sick and I finally remember in the dream that he is no longer miserable and he is with God but until then I feel so guilty and then so sad that he is still hurting.

Going to the cemetery on the 1 year anniversary was overall good for me. As crazy as it sounds the one thing I was not looking forward to was actually seeing his name on the grave marker. I knew in my heart that he was gone but somehow in my mind if I saw his name it would be even more real and very final, is that crazy or what?

November 2005