Good morning! We haven't updated in awhile, but soo much has been going on! Where to begin?!
Brystal got her FIRST Tooth on the 10th! Proud mommy! I couldn't believe it. The only down side to her having a tooth now is the faces she makes. She doesn't like opening her mouth to smile anymore. I think the tooth bothers her because she ALWAYS has her lips in a pouty face. Lol but yesterday she was starting to open her mouth more and smile her beautiful smile. It is a start! Also since she doesn't like having her mouth open I only was able to get one picture of her tooth and she was crying so I am not posting it hahah. I'll post one once she is okay with showing it to me! :)
Second, Brystal is doing so well with her Physical Therapist. We have been seeing her once a week now. She brought over a walker for Brystal and with a little add ons and tweaks it will be perfect for her. Without the stuff on it now she is doing great. We just want to make sure she won't get hurt or anything from it. She pulled herself up on a barbie house last weekend as well! I was so proud of her. Brystal is so determined!!!
This last weekend we went to Tucson for the Tucson Meet Yourself. We had a booth for EB Awareness and we handed out SOOOOO many of the cards! I was so happy to be apart of it. We were there for three days. Brystal was awesome. She was waving at everyone walking by. She was also blowing kisses! We were selling EB bracelets, bags and window stickers! If anyone is interested in buying something let me know! All the money goes to P.U.C.K to find a cure for EB.
One of the best parts of the weekend.. Getting our pictures done! We were contacted a few weeks ago by Sobecki Photography and asked if they could do family pictures for us. We said yes of course and we were able to do it yesterday! We have seen a few of them so far and they look amazing. She made it so fun for the girls. I can't wait to see how the rest came out. Brystal wouldn't do her awesome smile but she was able to get some really cute pictures. If you live in the Tucson or even Phoenix area feel free to contact Shamron Sobecki! She is amazing at what she does! www.sobeckiphotography.com
Here is a little sneak peek!
This is her new smile because of her tooth hah <3
Just love Brystals face in this picture! hahah
October 4th I had to take Brystal to see her dermatologist at Phoenix Children's Hospital. Brystal clearly had an infection on her leg but a fever as well, which doesn't ever happen. We were really worried. They took cultures of her leg and since it was so late on Friday they weren't able to send the cultures to the lab till Monday! By Monday Brystal was beyond fussy. Nothing stopped her from crying. I ended up taking her to her pediatrician to see if there was something else wrong. We weren't able to do a urine sample since it required us to use an adhesive ( BIG no no for EB patients.) We couldn't figure out what was going on. We just figured we would wait till the lab results came back and proceed from there. We got the results back that week and found out she has two infections on her leg and one was MRSA.. I was so mad! I couldn't believe it. So now the whole family has to put an antibiotic in their noses three times a week! It took a week to get the results back, but Brystals leg already looked 10x better! It doesn't look infected anymore and it doesn't have any drainage what so ever. Which is a great sign! But her derm wants us to start doing bleach baths again! Hopefully this helps her.
One last thing! A few weeks ago a lady saw Brystals story and was so touched that she started a fundraiser for Brystal! We didn't ask her to do it for us. We didn't have any involvement in it! I am deeply touched that she did this for her. It really meant a lot to us. Feel free to pass on the link or share it with some people. It would really mean a lot to us. Bandages are not cheap. www.indiegogo.com/bandagesforbrystal
Thanks so much for reading my blog. Sorry again that I get so behind at times. I will try to update again in a week! Hope everyone had a great weekend and has a great week :)
Look who stopped by! Congressman Ron Barber
Him and his wife both took EB bracelts :)
Favorite picture from the booth!