"Suffering the Slings and Arrows of Outrageous Fortune"

A few updates

Been awhile since I posted, so I thought I would do a general update:

Em is continuing to recover after her appendectomy. It still is up and down for her, but generally she is doing well. She still has a lot of stomach pain, particularly when she over does and her pain medication wears off. The Miralax is working very well and has addressed a lot of her issues and she truly wishes she had tried it sooner. [We recommend trying the Miralax in cold apple juice (not too sweet, not too sour) and letting it dissolve thoroughly!] Her appetite is still very poor and she still gets full after a few bites but I think we are seeing some small signs of improvement. Could just be wishful thinking though… The weight loss has slowed and she is hopefully going to start at least maintaining where she is.

Em started water therapy last week and did really well – except that we stupidly scheduled therapy two days in a row for the first week. Seemed like a good idea at the time, but it totally kicked her butt. However, she managed better than I expected and it was a pretty big accomplishment considering all she has been through. She did have a big increase in pain though after the second visit, so we will need to let them know so they don’t add in more in this next week. The therapists are ones she has worked with for the last few years, so they know her and she knows them. And, they are my husband’s co-workers/ friends, which helps my comfort level. At any rate, I think Em is going to really benefit from a few weeks of therapy -hopefully it gets her jumpstarted and feeling better and stronger. She  is scheduled twice a week for the next 3 weeks and then we will see where to go from there.

We had a family event to go to  this weekend and that is always a challenge for Em, especially after her back to back therapy sessions . It involved a 2 hour car trip each way and going to an outdoor party where it ended up raining and cold. But, it was for a very good cause and Em wouldn’t have stayed away for  anything. Seeing friends and family (and having a couple slobbery dogs to love on) is almost always worth the expenditure of energy it takes and I think she enjoyed herself. She will pay for it for a few days but that is better than never doing anything fun.

We got registered for the EDNF Learning Conference, thanks to a ‘donation’ from my parents. With the conference being in Cincinnati, I hated to miss it but just couldn’t see how to afford it. My parents stepped in so we could go and we really appreciate it. Even Em wants to go – previously she has rejected any suggestion that she meet other kids like her or anything of the sort. But she is starting to talk about it and asked to go to the Conference with us. I just don’t see how she would be able to do the full weekend, but I am hoping she will be able to come down for one day/afternoon and maybe participate a little in the kids program. I know it would be good for her so I am hopeful that we can get her there for at least a day. I know I am looking forward to it now that I know for sure I am going!

I think that is all my updates for now – BTW, I am still working on my Emergency Plan and will be posting soon about some ideas I have about making it work.  (See Surgery/ Emergency Tips Parts 1, 2, 3 and 4) I haven’t forgotten and I am working on it! It is a big task but I am anxious to try out a couple ideas and share them with you, if they work!



Comments on: "A few updates" (4)

  1. Karen said:

    Hi Beth,
    I’m glad Em is doing well.

    I am curious about the Miralax. How much of it does her doctor want her to drink a day? Amanda’s doctor wanted her to take a capful of Miralax mixed in 8 ounces of water twice a day. Amanda also has the problem of getting full very easily on very little food. She could not take in much of the Miralax…barely even a quarter of a cup…plus, she did not tolerate it…made her feel nauseous. You mention Em can only eat a few bites of food at a time so I wonder how she gets all the Miralax in? I just wish it had been successful for Amanda and am glad it is working for Em. We tried having Amanda sip on it throughout the day, too…but, no success. I hope things get better for Em with eating and her weight. Amanda went through a big weight loss until she started seeing the GI doctor and had formula supplementation for four months. Now, she has been maintaining a healthy weight…but, still doesn’t eat much.
    Take care….

    • Hey,
      I admit, I was skeptical about Em being able to tolerate Miralax but it has helped and she actually hasn’t complained too much along the way. Really we just had to find something she could drink it in. She tried Cranapple juice and just couldn’t do it. She wouldn’t even attempt it in water. Apple juice (cold!) was the thing that did it. With the qualifier that we have to let it sit for maybe 5 minutes so every single bit of the Miralax dissolves and, after stirring it really well, I have to take the spoon out before I take it to her – she doesn’t want any reminder that it isn’t just juice! She has never made it for herself or watched me make it and I think that is probably a good thing!

      The surgeon wanted her to take 2 doses a day for a week but said just put it anything and talked about juice or milk or anything. We started off with 1/2 a capful twice a day and worked up to almost 2 capfuls over a few days. By the end of the first week, I would say we were doing a scant capful in 8 to 10 ounces of juice but we have backed off to a scant capful (maybe 3/4 of a dose) once a day now. It started working very quickly (especially once we tried the apple juice because she was actually drinking it!). She does get nauseated but seems to tolerate liquids better than solid food, generally. She has been told to hydrate well and I guess she knows she feels worse if she doesn’t? Although, she does struggle sometimes on bad days and it is a real balancing act.

      She hated the idea of the Miralax at first, but, when it started helping so well and she absolutely knew it was helping her feel so much better (she finally told me she had no idea how bad it was until the Miralax helped), she is now committed to taking it every day for the rest of her life if necessary! The nausea is better now that the constipation is relieved and she only has to drink her juice once a day. But, in her case, I think the constipation was definitely contributing to the nausea so it was a bit of a vicious cycle. She is maintaining her weight for now, so that is a really good thing. I am really hoping this was as bad as it will get but I have a nagging feeling that is wishful thinking.

      So glad that Amanda is maintaining her weight – it is amazing how much these kids can tolerate. I think they are heroes for all they go through and carry on with their lives! I know you would like her to be able to eat but maintaining is good, even if you don’t quite know how she is doing it!

      Talk to you soon!

  2. Michelle said:

    I wanted to thank you for your posts about the issues Em dealt with regarding surgery. Meg will have a gastric pacer placed today at Nationwide Children’s in Columbus. (Sitting in her hospital room right now). I have relayed the EDS specific concerns to him and believe it will help tremendously.
    Glad to hear she is doing better.

    • I will be praying for you both! I knew her surgery was coming up but didn’t realize it was today. Hopefully this surgery will help and make things generally better – you both deserve a break! You will be in my thoughts – let me know how it goes!

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