Most likely it was because my mom left today (she will be back in 34 days with my dad), its pouring rain, pitch dark outside at 430, and my jeans are starting to feel tight again, as I have been able to keep up with my exercise routine. I don't know how much I should be pushing Kourtney to be exercising, studying, her body is so weak. She just yawns and yawns and yawns when we do homework with her, and when she stands up she is short of breath and goes so pale. A part of me just wants her to watch TV or netflix. If I push her I feel guilty if I don't push her I feel guilty and ashamed of myself for lack of discipline......but I can't do it all. That is the way I feel right now. Kourtney is so irritable that even the slightest wrong move can send her into orbit. We both know that I know her skin the best.
I also had a long chat with the hematologist today. I am not sure why he thinks that her hemoglobin of 79 is fine, and nothing we should not worry about. He didn't think her anemia was a problem until we went through her history and then it became evident that a hgb was too low for her. Although he is such a nice guy, and has always been receptive to my suggestions, I don't think he fully understand anemia of EB- I find that exhausting. But then I talked with Dr Cautermanche, he had received the report from the Abbotsford Hospital, and acknowledged my concern. He gets EB. He calls himself the plastic surgery paediatrician quarterback and understood my complete frustration ! He rallied the troops and......
Thursday Kourtney will have a scope. Please pray that they will find the source of the bleeding and that it will be simple fix......like changing her medication. For Kourtney to be poked and prodded it just causes so much damage, even the scope has the potential for problems. Then she will be admitted overnight, and be transfused. Please pray that she will be able to hold on to these red blood cells and she will feel better!! She will also see a cardiologist and see if they can get to the bottom of fast heart rate.
I made the mistake of investigating on the internet....not a good thing. I have to take this all one day at a time. I am exhausted mentally and should have not gone close to the internet.
Please pray for an answer on Thursday.....it is not a great way for her to live.....we all want her well.
2 comments:
Janelle, don't be so hard on yourself about just letting Kourtney watch tv or keeping her in a routine. Whatever you are doing in that moment is the right thing. You are the best mom in the world - I truly mean that! Kourtney and Shaelyn are so blessed to have you as their mom!
I agree with the above! You are doing a tremendous job Janelle. Special needs makes us question ourselves all the time. There is not rule book, no road map to follow and no manual .... other than our Bible. You are loving and caring for her above and beyond what I feel other parents would be doing. If the school work is just too much right now, is there a way to take a break and recharge? I just sat and read this all again and caught up and am praying daily. Now I will pray for a good night tonight (that you are both sleeping peacefully right now) and for good results. I so pray that Kourtney is able to gain strength and have renewed energy in the days/weeks to come. Oh, and as far as typing on the Ipad, I'm doing that right now with my new ZAGG keyboard. It's fantastic and I ordered it online. A great way to take it on app'ts and type on the go easily.
Much love, hugs and prayers Janelle. You amaze me with all that you do.
Flo
Post a Comment