Hi guys... I wanted to give an update since I've been busy doing EB Awareness posts:) Tripp has been hit or miss- good days/hours and bad days/hours. Honestly, each minute can mean something different for him lately. He is still on the morphine (around the clock again within the past few days because of his corneal abrasions). His eyes are just POURING tears and constantly draining. But thank God he is still opening them (there goes my jinx, I'm sure). Anyway... I am patiently waiting to hear from the eye doctor about when we can get another OR room to put his contact back in and trim some of this tissue that's pretty much trying to cover half of his eye. SO- whenever they call with a room- we go. Until then, I give morphine and motrin and eye ointment. Last time we did bloodwork, his WBC (indicates infection) was still very elevated. So I want to contribute him STILL feeling yucky to an infection somewhere that we didn't treat. He still runs some low grade temps at times when I catch him in between motrin doses. I personally think that he probably needs IV antibiotics... but that thought makes me nauseous. So we will probably be doing some more bloodwork soon, I would think. I haven't talked to Dr. Defusco lately... but I'm sure I will soon.
OH- I almost forgot-- When I weighed him today, he was 20 lbs, 8 oz. Yay! This is good (for him-remember, that is what he weighs with at least 2 pounds of bandaging on). But, it means he's putting some of the weight back on that he lost all of those weeks he was SO sick. Please pray that this continues- he has A LOT of catching up to do... skinny little thang.
But anyway, these are some videos that I've taken within the past 1-2 weeks when I can catch him in a good mood:) Hope you enjoy... and ignore my irritating voice (if I could mute them, I would. ugh).
This is what poor Mommy gets when she asks him for a kiss:(
Rotten little boy.
Signing "hat"... but only when you tell him not to.
Again, rotten little boy.
Swinging.
Bowling.
Love,
Thank you for posting the videos. Tripp is absolutely adorable! You can't help but fall in love with him.
ReplyDeleteThank you so much for the videos! Julie and Jason were on the computer earlier before they fell asleep looking at Tripps pictures and watching some videos on Bella's blog. I will be sure to have them check these out tomorrow. Oh and by the way, I think he bowls better than me ;) My prayers tonight will be that an OR will open soon for him to have his eyes tended to. I am also praying that he can get over the infection that he has. I am sure that has got to be effecting his "playfulness". Even in spite of that, he still does seem to be having a little fun. He surely was being a character when he was shaking his head no to give you kisses. He is something else. Hugs and Kisses to him.
ReplyDeleteLove the videos. Tripp has got to be the cutest little boy ever. I agree with the comment by Maria that says "You can't help but fall in love with him."
ReplyDeleteHe is just so gorgeous! Love the videos so much!
ReplyDeleteI love that little monkey!
ReplyDeleteCourtney...your voice is the sweetest thing... especially your giggle when Tripp responds to you! Bless his little heart! Thanks for sharing the videos!
ReplyDeleteYour voice is true love for you beautiful son - I feel so blessed just to witness it!!!! Watching that precious little boy in these videos just warms my heart - he is so SPECIAL!!!!
ReplyDeleteCourtney, my sister and I follow your blog separately and then say things randomly when we see each other like, " Ah did you see tripp riding around in his toy car today?!"
ReplyDeleteWe saw a documentary years ago where two children in a family had EB. The second we heard of it we couldnt forget about it. I bought an EB inspired necklace as a present once for my sister. I donated money to EB research one yr as an office christmas present- instead of getting everyone a trinket to put on their desk. I feel like I am on all the EB info chains now :). I also follow a few other EB blogs. I say this because no one we know in our every day lives has EB. but we are passionate about following the new developments and research. Your blog and other stories like it, are what continue to inform people about EB.
I just wanted you to feel less alone. because I picture you in your house with your little muscle man... and I know how I would feel on and off. Anyways. we are obsessed with Tripp and think he is superman too.
When you worry about Tripp. or laugh about something he is doing in a video... so do we.
He is in my prayers :)
Abby
Beautiful videos of a precious boy. He has so much personality!! God bless him and his family.
ReplyDeleteSo cute! Thanks for sharing. :)
ReplyDeleteLove the videos....He is a ham! Stephanie from MD
ReplyDeleteThere is nothing that makes my day, like watching a Tripp video! He is absolutely adorable!!!!
ReplyDeleteThose videos are sooo cute!! Thank you for sharing them with us! I do have one question - in the EB awareness you explained that any type of friction affects his skin - My question is, do the swings or the chairs where the plastic parts fit between his legs affect him? Do you hsve to add "extra padding" or the tape to help? Just wondering! Thank you!
ReplyDeleteBobbi K.
Courtney,
ReplyDeleteThanks for the update. I looked at your blog first thing when I got up this morning. The video's were adorable. It put a smile on my face that will last all day. Tripp is soooo smart! Hope they have an OR soon.
I've been checking your blog everyday waiting for another update. It seems that the more I read about Tripp, Jonah and the other EB kids the more I fall in love with them and think about them during the day. Tripp is such a smart little rascal! I agree with the other posters, I love your voice and laugh! The love you and adoration you have for Tripp comes through on every video and post.
ReplyDeleteI am new to your blog today! Tripp is a beautiful baby. I don't know much about EB other than what little I read here. I will keep your sweet family in my thoughts! And thank you so much for sharing your story!
ReplyDeleteHe is absolutely precious. You are all in our prayers everyday.
ReplyDeleteJackie & family in western Pa
Gorgeous, gorgeous videos. He has SUCH a funny little personality.
ReplyDeletei love getting to see his cute personality in action! what a sweet, sweet boy.
ReplyDeleteI am in awe of you and your unselfish love for your son! He is precious! When I find myself struggeling with a sick child and feeling sorry for myself, i think of you and Tripp. Your a wonderful, strong, loving mother~please know that there are so many prayers for you both! Sounds like your mother is a hero also!
ReplyDeleteCourtney:
ReplyDeleteI have been following your blog for a while and have fallen in love with your little man. My family knows about him and ask often how he is doing. We just watched the videos together and are in awe of his strength and sweet personality. Please know that he (and the rest of your family) is in our daily prayers. Thank you for sharing your story with us, you are pretty amazing yourself!
Hi Courtney:
ReplyDeleteThank you so much for the videos. I can't get enough of my favorite boy. God Bless Tripp. Give him a big hug and kiss for me. Love you guys. Love Leah's Nana
Those videos always make my day!!!
ReplyDelete