The good news is that Leah's eating is improving. The bad news is that I'm pretty sure she's got a corneal abrasion on the other eye now. Ugh. We go to see our new pediatric opthamologist on Thursday morning. Any EB'ers out there know of any good eye goop, drops, etc. that I can ask the doc for that'll help the little girls eyes? It breaks my heart that her beautiful blue eyes can look so sore. The new sore eye doesn't look nearly as bad as the other one did so hopefully it'll heal a lot quicker.
Leah's eating started me on an hour long breakdown today. And yes, I did just write that her eating was good news today. I was so happy that she drank 4 oz in one good suck of the bottle that I started crying. Then I felt sorry for myself that I feel compelled to cry just because my child drank a bottle. Then it just got out of control. I started thinking about Jonah and Patrice - and how I wish I could magically teleport some of Leah's good eating to Jonah. Then I started thinking about little Tripp and Courtney, and how I remember how overwhelmed, exhausted and scared we were when Leah's trach was new and she had just come home. (Leah had dozed off after her bottle so she wasn't fazed by my quiet blubbering). So then it just became a general 'I hate EB and what it does to these poor kids who don't deserve to be in any pain at all' cry fest. I hadn't had a good cry in awhile so I guess it was due. I snapped out of it by reminding myself that I shouldn't waste my time on a day where Leah is here at home, doing relatively well and not sick in a hospital, by sitting on the couch and crying.
I also got myself together by boxing up some supplies we're donating to dEBra's Wound Care Clearinghouse. EB Nurse Geri had posted on Facebook that they're running low on supplies while requests keep on coming in. So here's what I gathered:
So now I just have to tape them up, measure them and send the measurements to Leslie and she'll send me UPS shipping labels. If anyone else has some wound care items they'd like to donate, please email Leslie at: leslie.rader@insightbb.com
4 comments:
Oh how I know that "I hate EB; EB sucks" meltdown. You are completely entitled to have them. I'm sure this wasn't your first and it certainly won't be your last.
That is an amazing amount of stuff you have accumulated for the clearing house. I did't see that post of Geri's on Facebook - I will have to go and see what I have to donate as well!
Hang in there!
Janel
~These are what other EB mom's have suggested: Muro 128 5% ointment to put in his eyes each night, and not to sleep with a ceiling fan.
~Refresh PM..or lacrolube or puralube.(they use these in ORs to lubricate the eyes during surgery...and then every day three times a day we use refresh eye drops
~Restasis eye drops as a preventative measure from chronic corneal injury, usually from drying out in the middle of the night
~Refresh Tears Plus Eye Drops (they are individually packaged in sterile containers). We use these drops up to four times a day in addition to applying about a 1/4" ribbon of ointment prior to naps/bedtime. This child also uses a contact lens when he has an corneal injury to protect the eye while it heals.
We like GenTel eye gel. I get it at Target.
Hope this helps!
If you, me, and Courtney ever get to (finally) meet in person, I'm pretty sure it's just going to be one big cry fest. So just look at today as good practice.
Praying.
Patrice
My poor baby. Sure glad you had a chance to get it out. Crying is the best medicine sometime. You know me, I cry all the time. I always feel better after a good cry. Hang in there love, you are doing an amazing job with this precious little girl. Love you so much and I am sooooo proud of you and all you do everyday. Give Leah hug and kiss for me. Love Mom XOXOXOXOXOXOXO
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