This is a two post kind of day. First I wanted to memorialize the Spirit of Hope luncheon (see previous post) and now I'm going to update on the other stuff going on.
1) Finally got my appointment with MD Anderson after extensive follow up with Dr. McAndrew's office. Be your own advocate in your medical care. Medical professionals are busy but the squeaky wheel will get the oil...and now is the perfect time to be a well-oiled wheel.
2) Leo got his case taken on by the Westside Regional Center (WRC). The WRC is a social service that can provide in home physical, speech, or occupational therapy to qualifying kids. Leo is 23 months and still not walking on his own and that qualifies him. He is very close. He stands on his own. He'll take some steps but won't do much without being pushed. I know that early intervention is key in an developmental delay so he had already been doing physical therapy two times a week. Those session were only half hour sessions and the developmental pediatrician recommended that he be in at least three hours a week and one of the hours be at a gym for occupational therapy. He is diagnosed with benign (a word I like) congenital (born with it) hypotonia (low muscle tone) and he will outgrow this in time with assistance. His speech is affected by the low muscle tone as well so he will greatly benefit from the speech therapy in addition to the PT and OT. Sure, it makes one more thing to do with all the craziness already going on BUT I am thankful that this is something we can work on and that he can overcome. I am grateful that he can get the help he needs. He's not losing words or regressing physically both of which would be signs of something more severe. He is getting stronger and that is what we want.
My appointment in Houston at MD Anderson is on Thursday, November 29th. They tell you to expect to be there five to seven business days so I think that means I can be there two days then come home for a break to be with the kids and then go back the following week. I still don't know what the treatment plan would be and what it would entail. Staying in Houston for treatment 3 days a week or a week every two weeks or what or what or what. I'll find out when I find out. For now I am focused on accumulating medical records, films, and reports to make sure they have everything they need. They treat in a clinical setting so I will be talking to many MD's and nurses and want to make sure I have all my answers ready.
I am eager to get the therapy started. Abby asked me last night why I was going away in a few weeks and I told her again, "There is something growing in mommy's body that shouldn't be there, called cancer. Mommy is going to see special doctors so they can help mommy get all better". That's enough info for her for right now. Leo will be a bit more difficult since he can't communicate as well. My goal is to keep their routines as normal as possible and have lots of friends and loved ones around so they won't have time to miss me (even though I know they will).
Am I worried? I would say I'm a little worried that this time my body isn't as strong as it was before since it is still recovering from surgeries, radiation and chemotherapy but I'm also not pregnant this time and won't need to give birth in between. I know that the "pre-meds" were so great last time that I didn't have terrible nausea and the steroids allowed me enough energy to come home after Chemo and play with Abby. I remember it was the fatigue that eventually caught up with me. I need to get on a better more consistent exercise plan. I've got my herbs and acupuncture with Dr. Mao which helps too.
I feel like an athlete preparing for an event. The stronger I can be the better I will be able to handle the fight.
Game on.
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