Wednesday, February 17, 2010

Wednesday Afternoon Update

Sorry for being behind on updating. Yesterday was Eli's 1st day with his respite nurse! She was here for 6 hours! Bob and I ran errands, did some shopping, and even went out to lunch together. It was oh so amazing. I love Eli to death, and love every moment I get to spend with him, but this was beyond needed. I never knew life could be so stressful and hectic, and such. Any parent struggling with a sick child gets such a HUGE amount of respect from me...not that I had respected them before but HOLY COW. You don't understand it until you are living it. WOW. Eli did well with the nurse, and she with him. Eli will have 4 hours today, 6 hours tomorrow, they are working on Saturday (6 hours) and then Sunday no nurse. Starting on Monday he will start with his permanent nurse. 1 of their nurses wanted to pick up ALL of Eli's hours! Apparently this is not normal and we are incredibly lucky! She will be with Eli 5 days a week(2 days early hours, 3 days late hours0 and then every other Saturday(all day), with Sundays always off! We get to meet her for a bit on Friday and can't wait! We upped Eli's night feeding from 30cc/hr to 35cc/hr. He has done well so far, but hasn't been as hungry in the AM hours. So it looks like it will be slow going to get up to the 50cc/hr at night time. He has his continuous feeds for 8 hours each night and then nurses during the day time. He has done well with nursing so far and we haven't had to finish any of his feeds up with the GTube. So I've been very happy about that. My biggest struggle is pumping. I pump and pump and pump and I can hardly get anything. I'm currently taking Fenugreek, milk thistle, eating oatmeal, drinking lots of water, and pumping often. I'm hoping it increases soon, but so far no. Also today Eli had his therapy with Rainbows. She worked a bit with his legs and we discussed his startle reflex, and how it's increased since his surgery. She gave us some tips to try, and we will do some more work once he gets his GTube changed over to his Mickey!

In other household news. The older 2 are doing well. Benjamin is a disaster as always. Last night he threw the light sabor down the stairs at Ariana and it busted her lip completely open in 2 places. She was obviously VERY unhappy, blood everywhere, and now a very swollen bruised lip. We've got to figure out what to do about Benjamin, because so far nothing is working. I think I will be schedualing an appointment with our Pediatrician to see what her suggestions are.
Other than that nothing much new. Just trying to make it thru each day.

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