It is so odd to go from having Ryleigh only eating 500 calories a day to 500 calories as a snack! The change in her eating habits because of prednisone is unreal. One morning she ate 3 pancakes, 3 eggs, and 6 sausages! We travel to IHOP every morning on the #17 bus so that she can get her pancakes. You can probably tell by the puffiness in her cheeks that the steroid’s side effects are really showing. She also has a budda belly as well due to the steroids. She is now in the process of tapering off of the prednisone and will be done in about 5 weeks. Her appetite will decrease with the reduction of the steroid and then time will tell if her Crohn’s/Colitis will truly be in remission or not. She is very cynical and said to me today that we should enjoy this time as much as possible as she is not feeling pain in her gut or having other IBD symptoms. “They will return mom, I know it.” I hope she is wrong. Perhaps the 4th remicade treatment will be the charm.
They will be increasing the dose and having her treatments closer together to try and get it to work — that means travelling to Vancouver once a month.
We have tried to get out and about so that Ryleigh can begin her reconditioning. She continues to struggle with walking or standing for more then 10 minutes at a time. We looked at a cane for her but it was too big. We are going to go to a speciality medical store to find one designed more for children. I think if she had something to lean on when walking it would put less pressure on her leg. The leg pain is disabling for her and she struggles with walking and going up and down stairs. I keep reminding her that her leg has had a double injury — clot and weakness from a brain injury. Nevertheless, she still gets frustrated with herself. The other issue about her getting out and about is that her heart races and it really scares her. Even when she is moving around the room this happens — much like it did in the hospital. I am not sure if this is another issue or continuation from her low hemoglobin. I am going
to contact the clinic tomorrow to ask for some advice.
Ryleigh is being an all star with her daily injections of the anticoagulant called enoxaparin. When I was given the directions on how to do the injections they reminded me to make a grid pattern in her thighs so we could identify where the last injection took place. Therefore we wouldn’t reinject an area too soon. I don’t think that is going to be a problem. Each injection point has a bruise around it. It is very easy to see where she has had her pokes. She hates the injections but had become resigned that she hates having her clot even more.
I continue to enjoy the moments with Ryleigh as she begins to emerge from the cloud of her illness. Her bubbly and funny personality is starting to shine again. I am amazed that four weeks ago – even two weeks ago- she was so sickly. She was sullen, sad, and lethargic. I hadn’t realized how much I missed her giggle and laughter. She is laughing more and there is a sense of relief in her that she can be a child again. I told her she has some catching up to do – so she needs to laugh, have fun, play, and enjoy each moment. She is definitely doing that in any way she can – making fun of me seems to be her greatest joy right now. She is limited in what she can do so I will let her get away with it for now.
As for me – it seems like we are in a holding pattern. I intensely watch her symptoms without her really being aware that I am. Her left leg still swells up and she will have a cankle (calf and ankle all in one) – I watch to make sure it does not get worse. She still has some issues with her face, fingers, and leg but there have not been any new neurological concerns. She has been good at telling me when things are different. She has had some belly pain but my guess is that is indigestion from all the pancakes! All in all, I am trying to not be anxious or worried and I am sure as the days go on it will be easier to not fret so much. Both of us are appreciating the close vicinity of the hospital and feel safer being near her team of experts.
When Ryleigh was first diagnosed I had this false sense of security that she would be given the right type of treatment and life would go on as it always had. I am coming to terms with the fact that her illness is complex and chronic. It cannot be fixed by one thing — it needs to be managed and brought to a point where she can live a normal life. I think I see Ryleigh on the outside getting healthy again (perhaps a false sense due to the steroids and blood transfusion) and one can only hope that this time we will have figured out what to do. Until an illness like crohn’s becomes really severe it is an invisible disease. Most people would look at her now and think she had nothing wrong with her. I hope that research continues to find a cure for this disease. It is truly an unforgiving illness.
Tomorrow I am going to try and get her out for a longer period of time – hopefully with the help of an appropriate sized cane.