"EB"ing a Mommy: March 2010

Tuesday, March 30, 2010

I'm back... sorry.

Sorry it's been awhile. We have been in Ponchatoula for my grandpa's services. Everything went well and the services were beautiful. I will miss my Pawpaw so much. He was such a wonderful and loving man. Tripp was an absolute angel through it all. I brought him to the wake and the funeral because I didn't want to have to worry about switching out because I knew we all wanted to be there. He showed off like you wouldn't believe and had those squinchy smiles for everyone who walked by. I guess he enjoyed all of the different scenery. But he did have an "episode" the morning of the funeral. His trach collar (the big blue tube humidifier I put him on at night) obviously wasn't working right and when he woke up, he was completely dried up. I tried using the saline to break up the plug, but that wasn't working. He had turned completely grey and if he was breathing at all, I couldn't tell. I got the ambu bag and gave him breaths and gave him oxygen. I'm guessing the bag helped to push down the plug, because he slowly started coming back. Not fun. And when you're child turns grey, it's a vision that you can't ever get out of your head. Randy and my mom were both with me to help, thank God. And then he started the day all smiles after that. I just don't know how he does it. What a miracle.

Being at my parent's house has been great. They are so much help to me. And I've gotten to see a lot of my family that I don't get to see very often. My sister's bridal shower was Saturday, so that's why we just went ahead and stayed the week, instead of me having to go home and unload, then pack everything up again. But we are back home now.

Tripp has missed his last 2 OT visits because of the eye first and then my grandpa's wake. He is really doing well as far as using his hands and a lot better than I thought he would be doing standing with us holding him. We just need to be working with him more and letting him practice standing. I want him to be able to get around so bad, poor baby. He wants to be moving around and exploring things so bad but he can't crawl or turn over. He is sitting up SO well now and loves being on the floor playing with his toys. But you can tell that he just wants to do more by the way he tries to move around. He will lean alllllllll the way over to try and reach for something in front of him or he will shake his whole body... arms, head, and all. I have been trying to put him in his walker a lot more so he can start getting used to being on his feet. He likes it a whole lot more now for some reason.

He is just so doggone adorable these days. I really could eat him alive. He is SO much fun and learning and listening to every single thing that we say and do. I know he can't talk or can't communicate, but we can tell how smart he is. And even though he can't talk to us... we can tell exactly what he wants by his facial expressions and actions. He is hilarious and really makes me laugh so hard sometimes that I cry. I'm just so grateful that things have been going well and that he has been so happy lately. I know it only takes a second for something to change, but right now I am enjoying every single second of him. When he wakes up each morning and starts smiling and kicking his feet, it melts my heart. I could hardly even take a picture of him this week without getting a squichy smile! See?

This lasted about 5 seconds.

I put this outfit on him not knowing that it was too small and I would have to CUT it off of him.

At least I got a picture!

Helping Grammy cut the cookies...

My ALL TIME favorite pictures.

This was the best bath he's ever had. He was even kicking his legs!

Yay for SALT!

(the backs of his legs are where the sores are... but the tops of his legs, O my! They're gorgeous!!

I love love love love love this kid!!!!
Love,

Monday, March 22, 2010

Weekend, Eye Update, and Thanks...

Hi guys. Tripp is doing fantastic. The contact has been such a blessing so far. From the second they put it in he has been like a brand new baby. If we had a dollar for every smile we got this weekend, we would be rich. Randy wanted to go play softball this Saturday in Lafayette because he has been having withdrawals, so we went to stay at my parents house for the weekend. And we went to go see my grandpa, who passed away on Saturday around noon.

My grandpa was my heart. He was such a wonderful person and true man of God. I learned so much from my grandpa and I looked up to him so much. He will truly be missed by so many, but I know that he is up in heaven visiting with his parents and his brothers and sisters. And we made sure we told him to have a nice talk to God about Tripp when he gets up there. I know he is so happy and he's dancing around in his new body... just like my other grandpa. The services will be this Wednesday night and Thursday. Here are some pictures we took about 2 weeks before he passed. I am SO glad we have them.

Paw Paw, we love and miss you so so much.

We go back to the eye doctor tomorrow so they can check to see if the contact is helping the eye to heal at all. I am going to tell them that I do NOT want them to take it out yet. If anything, they can just go ahead and put one in the other eye to prevent anything. I have tried to put several things on his arms to keep his arms away from his eyes, but he's like the Incredible Hulk, he can break through anything. I've tried braces on the inside and out and tried the swimming pool "noodles." Both he still got to his eyes. I just don't want to wrap too tight and I don't have the heart to tie down his arms after everything he's gone through already. But he really has been doing better about rubbing them... I guess they aren't bothering him as much anymore. He has been SUCH a good boy. Back to his normal self (knock on wood). And now I appreciate his eyes and his vision and his personality SO much more than I did before. Each little thing that happens teaches me to appreciate him so much more. God, I love this baby.

We got so many squinchy smiles this weekend!!! See?

Big Boy!!

Tripp's new nurse, Kristi.

Tripp playing Pat-a-cake! Watch him "roll 'em up!"

So when I got home from my parent's house last night, I had a surprise on my doorstep from Heather Boisclair... one of my fabulous blog readers. It was a huge basket of goodies... chocolate, cookies, peanuts, crackers, gum, a "shake weight" and all kinds of stuff. AND then there was another bag with a present for Tripp- a Handy Manny "pillow book," which I have never seen before (SO cute) and a whole box of stuff for me (shampoo, hair clips, face wipes, fingernail polish). Isn't that so sweet. I think her mom is from New Orleans and close to us, so her mom delivered it instead of her having to ship everything! So sorry we weren't home! That doesn't happen often! It totally made my week! That was so so thoughtful. Thanks Heather! Visit her blog here and see her gorgeous baby boy, who is Tripp's age! Here's our goodies.

Love,

Thursday, March 18, 2010

Talk More Thursday... Sorry.

SO... we went to another eye doctor (we've seen him before, but it's the the one we went to last time.) This is the same doctor that was recommended our first visit. Anyway, THIS TIME they put some stain is his eyes and they could see that the top layer of his eyeball is almost completely sloughed off. Yes, I know. Crazy. So it wasn't just an abrasion, he probably had an actual blister on his eyeball. The doctor didn't really know much about EB, but he talked to a corneal specialist and he said that if he has rubbed a blister on his eyeLID too, that the eyelid could be what is rubbing on the eyeBALL and causing the trauma. So he said option 1 was to just keep the ointment in at all times and provide a barrier. Option 2 was putting a contact lens in to protect the eyeball from the eyelid or from anything else. And Option 3 was surgery. Surgery will consist of smoothing out of the eyelid and then applying a layer of amniotic tissue over the eyeball to protect it and try and heal the eyeball. I've pretty much already been doing option 1, so I chose option 2. I was actually the one who recommended the contact lens idea BEAUSE of another AMAZING EB mom, who e-mailed me. Her son Ryan also has JEB and was having the same problems. She said the contacts have worked for him. Thank you so much, Denise... I am forever grateful.. even if it works for a day! So first they tried putting the contact in with us just trying to open his eyes with our hands. That DID NOT work. He can close his eyes SOOO tight. It's impossible to get anything in there. So next was the speculum. I was totally ANTI-speculum because Ryan's mom told me to avoid it if at all possible. But it was the only way. And so far I haven't noticed any trauma from the speculum. We just had to hold his head REALLY still. He was so hysterical. I was completely nauseous and almost had a nervous breakdown. I will definitely need a sedative next time. Tripp and I both. But we finally got it in his eye and he was like a totally different baby immediately. So we will see if the contact will help his eye heal. We go back in one week to check it all out... unless it comes out before then. We ABSOLUTELY have to keep his hands away from his eyes. So I'm looking into putting something under his elbows, over his bandages and wrapped to his arms so that he can't bend them to rub his eye. I may only use it at night... or if he doesn't completely freak out, I can try it during the day, too. So we have to keep our eye on him every single second to make sure he doesn't rub (we do that anyway... I know.) He had a very traumatic day! And can you imagine the pain that he's been in with an eyeball that's been SLOUGHING off?? God Bless him... I am SO glad they finally found out what was really going on. I knew that I have been seeing a film over his eyeball, but I thought it was just a film from the blister on the top lid. Never did I think it was the actual top layer of his eyeball. Wow. Anyway... THANK YOU, THANK YOU, THANK YOU for all of your prayers. I am SO grateful!

Ok, so I don't even have the words to express how totally awesome my blog readers are. I promise you that I would absolutely NOT be able to make it through these tough times without the kind words and support from all of you. I literally bawl when I read the comments that left after I pour my heart out in a post. There are people from across the country who have no clue who we even are, that pray for our family every night. OUR family gets included in daily prayer from so many kind-hearted people. It is truly touching and almost sureal. My strength I know was given to me by God. But the day to day, minute to minute struggles that I face are made easier by the kindness and support from all of you wonderful people who read this blog, follow the story of Tripp's life, and who support me whether I am happy and thankful or down in the dumps and ticked off! That means more to me than you all will never know. How lucky I am to have so many people who care. Thank you.

Now for all you absolutely amazing, fabulous EB moms who read my blog and email me with suggestions, opinions, support, a shoulder to cry on, ETC... I love you all. God obviously chooses us because we can handle it, but my God... I don't even feel like I fit into a category with all of you wonderful people. EB moms must be the strongest, most caring, most patient, and selfless people I know. Thank you all for you support in these rough times. When I feel like I've hit rock bottom, you all are there like an army to pick me right back up. God Bless all of you. I wish I could find each one of you and give you a big fat bear hug, because I KNOW you know exactly how I'm feeling right now.

I will let you know how Tripp's eye is doing either this evening or tomorrow. I am hoping and praying that the contact lens will be able to stay in and help with the healing and the pain. Thank you all for your support. And please continue to pray for our little man. He is such an angel.

Here's some pictures from today. He was SUCH a good boy and AMAZING as always! His eye is still green from the stain. I don't know how long it will stay green, because I will probably need to flush it with saline to get the green out, but I can't with the contact lens. As long as it feels better, I don't care what color it is!!