We are in a heat wave for the next few days and what do you know, our pool is having issues. The pool guy came on Thurs and our motor was blown and also all of our electrical. Janessa is sooo upset. It will not be fixed until at least this Weds. just enough time for the end of the heat wave. This is also costing us a pretty penny too. Whatta gonna do. The building of Isaiah's house will be this week and the lift is being put together today by my FIL and Rick and uncle. I cannot wait to post pictures of everything.
The boys are staying put in AC all weekend, they would not last 5 mins. outside in this heat. We kept Avery's port accessed just increase he did not tolerate the heat and would need IV fluids ove the next few days. His panic attacks seemed to be a bit more controlled with lots of reassurance that we are not going to torture him, love and drugs. LOL. He is still very junky and has been starting his day over the past few vomitting mucous wqhich causes him to be more junky but I think he prefers that rather than us suctioning him. He is quite a smart little guy.
I am getting nervous about going to the mito. conference which is in a couple of weeks. I will be gone fore 3 days and in Indy. I am just REALLY nervous to go too far from Avery at this point. He changes like New England weather, never know when he will be in crisis. I have a great nursing staff but WHAT IF........
What would you do? Would you go? My goal in going is to get to talk to a dr. that would be really interested in pursuing finding a mutation gene from the boys so when it is time for Janessa to have kids, she will not have the same fate as me. Also to meet some great moms that I talk to online often and share experiences.
3 comments:
You can take Janessa to use our pool. Love to have you. You have to use your own judgement to leave. Aren't their genetic experts closer? Expect things to go wrong when you have a pool! Sounds like you have a hosp. going in your house with Avery. Do you want that crib that has The IV pole attached to it and can raise the head & foot of bed. Asked you before but I guess yhou were too busy to answer. She probably still has it & it makes into a daybed.
ES
home from the party now. more to tell you.........it is a tough decision on what to do: but Rick is a great support and learning so much lately that with your nursing group things should be fine. our pool was closed too on saturday!!! and the condos have no outside faucet even:( so i gave the boys a shower:)
love you,
sonya
Do you have an email for anyone organizing the conference? I don't know if you already have an itinerary etc, but if not, I think I would try and talk to someone, or email them, explain your dilemma (which I'm sure must be a common one for parents wanting to attend) and ask which part of the conference they would recommend as most important, if you could only come to part of it.That way, if there's one day when they focus on the stuff you're particularly interested in, and can't find out else where, or a certain time that's organized for meeting the experts, other parents etc, maybe you could focus your trip on that, and not feel like you're missing too much by going for less time. I know know it's hard for me to leave Celia and Sophie for three days at the end of the week, and they're both healthy right now. It's always natural to have worries about being away from your kids, but so much harder when they're sick.
you could also do a pros and cons list. Sometimes that helps you to think things through most productively.
And if you really don't know how to decide, you can always toss a coin, and if you don't like the result, you'll know what to do!
Good luck with the decision. and the pool!
Alison.
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