Malia Moore

October 20th 2012

Today is my 4th big party here in Austin Texas! It is always such a good time! Great friends and family, music and fun! The only thing I wish for is that I was feeling a bit better. I heard my mom this morning while she was showering praying to God and asking Him to please let me have a good day. She was actually pleading to Him and saying that of all the days could this be the day that I could feel well. He heard her, and He answered her as today at my benefit I was just fine. Irene was so awesome with me and of course my cousin Maddie and Auntie Tracey and Grandma Marg. Everyone was helping with getting me ready for my party! I was looking quite cute for my big day. Irene braided my hair and I was sporting my new Sting Ray wheelchair a pair of darling skinny blue jeans, my Michael Jordan tenny’s and a cute owl top! I was looking rather cute today and thankfully my mood was good. I was not overly happy but then I was not upset either. I was happy to be at my party and happy to see the support, love, and friendship that so many people show to me each year.

A huge thank you to all the very talented musicians who came to play, to our dear friends and family that helped run the event and make it a success, the friends and supporters who donated such awesome items to our silent auction and to Michael and Susan who let us have our party at their fine establishment Opal Divine’s! If I have forgotten anyone please forgive me it has been a crazy busy week. Please know we love all of you so very much!!! Thanks for supporting me and our cause! We hope to have raised awareness about Lissencephaly and help others see how special we are. A big thanks to Paula and Daphini for coming and bringing my buddies Connor and Grace. It was awesome to get to see you again! We missed you Wil and Kimberley this year we hope to see you next year! The weather could not have been better. A nice slightly warm fall day and not a cloud in the sky. Thank you, Thank you, Thank you to all….. We are so blessed to have all of you in our lives.

Love Malia

October 19th 2011

After two really nice and calm days at my grandparents we headed to Austin. We are picking up Irene today from the airport. I am excited that Irene is able to come to my party. It will be so great to see her! She is flying in from Miami. She has a grandma there that gave her a a baby shower party!!! My grandma Marg from Canada arrived yesterday as well as Auntie Tracey and cousin Madeline. I now have a representacion of my Canadian family here!!!

That night it was the traditional get together at Freddie’s. I was not feeling so hot when my parents left me with Grandma Marg and Maddie. I was cranky and crying and just overall sensitive. The antibiotics are not treating me right and I am having tummy problems as well….. Geez cant a girl every get a break??? Hopefully I will feel better for my big day on Saturday.. My parents were able to have a good time at Freddie’s as they knew I was in great hands.
Love Malia

October 16th, 2012

The last two days spent at my Gammy and Pa Pa Shroyer’s were not the greatest. My reflux is overwhelming right now. What normally takes me 1.5 hours to have my meals are now taking me 4 hours. My parents have had to slow my food down tremendously in order to try and avoid my refluxing. We have increased my reflux meds and I am now taking them three times a day instead of once a day. I felt pretty good the day of the birthday party but after that it was back to aspirating and nebulizing me sometimes up to four hours in a day we had to do respiratory treatments. My grandparents were a big help, my grandpa made a fabulous meal everynight and my grandma helped out with my parents as she used to be a registered nurse and was there to give an extra hand if needed. Thankfully my parents are able to manage me on their own as any other parent would probably have been running to ER. There were some nights that I was very close to going there myself!

One night my parents noticed that I had smelly urine and green gunk on my diaper. Not a good combination. My mom called Dra. Castro, and she said it was better to take the round of antibiotics she sent us to Texas with to keep me from getting worse. There was no doubt in my parent’s mind that I was having another urinary tract infection. The only catch with this round of antibiotics is that they are intramuscular injections. Irene is not showing up until Friday so we are solo on this one! Thankfully Gammy knows how to give IM shots and she showed my mom how to do it. My parents videotaped her and then the following day my Aunt Kelley (who is also a RN) gave me the next shot and we videotaped that as well… The last injection of the antibiotic was left up to my mom. After videotaping and watching two times she felt pretty confident to give me my shot.

On Wednesday we headed towards Austin to my other set of grandparents house. On our way out of town we swung by and saw my great grandmother Izola in Shiner. It was wonderful to see her again..The next two days at Granny and Paw Paw’s house I behaved. I did not have to be aspirated nor nebulized and it seemed like things were looking up for me and my big day.

My Auntie Debbie came over to see my mom and my dad had left to see Uncle Andy in Austin. They always get together and hang out at least one day when we come to town. Debbie was great and an awesome assistant to my mom as the following morning it was time for my shot and my mom did a great job administering it to me. I did not cry one time and Auntie Debbie helped out as well holding me still so that I would not move when my mom was giving me the shot. Now it is time to take an oral antibiotic for seven days since we have finished my round of Rocephin.
Love Malia