11 Months!

Aila is now 11 months!!!

She is pulling herself up on everything and wants to walk so bad!

She loves to crawl up the stairs and is getting quite fast.

She loves to dance and put her hands up in the air and clap.

She had her first Christmas and loves playing with all of her new toys (She is very loved)

She got what every kid wants for Christmas, her two front teeth, but she isn't a fan. Poor girl was up all night on Christmas crying.

She is eating more foods, she loves grapes and black beans

She only wants to be with mommy and daddy and only sleeps if she is in one of their arms.


Our 11 month photo shoot didn't start off that great, poor Aila has a runny nose and a cough, but we ended with some big smiles with daddy holding her.

Macro Cystic Lymphatic Malformation AKA: Not cancer but still a bit serious

The Medical Stuff
We met with Aila's doctor today to talk about Aila's diagnosis and treatment. He explained that Aila has Macro Cystic Lymphatic Malformation which means that there is liquid building up in her neck that needs to be treated. The "Macro" part of this diagnosis is very important as it means that the pockets of liquid in Aila's neck are bigger and easier to treat.

She will be treated by a procedure called sclerotheropy. The liquid will be drained from her neck and an irritant (sometimes they use straight up vodka) will be added in hopes that it scars the tissue and keeps fluid from collecting in that area.

The Scary Stuff
Aila will have to be put under for this procedure and the procedure will have to be repeated maybe five or six times, once a week for a little over a month. This procedure can be very painful and there is a risk of infection, which can be very bad. We will have to keep a close eye on Aila's breathing as an infection can cause her throat to close up and there is a chance she will need a tracheotomy. The doctor seems hopeful that this procedure will do the trick, however if it does not, Aila will need surgery and the pockets of fluid are nestled close to her jugular and carotid artery.

The Emotional Stuff
Stuart and I are still processing and thinking through the best way we can be taking care of Aila. Though we weren't aware, an infection has been something that has been a very serious risk for her since she was born. MCLM is pretty serious if there is an infection and it can get infected at any time. We feel very blessed that she has had this for 10 months and not had any type of infection (We traveled with her for crying out loud!). Her infection risks are higher if she gets sick so please excuse us not handing her off, making people wash their hands before they play with her and not being around other kids too much.
We are sad that our baby girl may be in pain and are hoping we can ease and comfort as much as we can and we really don't like the idea of her going under once a week but we are hopeful that once this is all done Aila will be nice and healthy.
This year has been hard but we are very aware that it hasn't been as hard as it could have been. Please keep praying for us. Pray that we may be able to think clearly through all of this and ask the right questions, pray that we may trust our God and his goodness, that we may not be anxious, that Aila would not be in pain, that the procedures may go well and that it may be able to treat her MLCM and that nothing further needs to be done, and that as a family, we would have moments of joy, times where we don't feel this looming over us but can just have fun together. Your prayers and words of encouragement mean so much to us.

MRI/Anesthesia

I remember when I was pregnant and wondering what kind of mother I would be, that people would tell me not to worry, that for the first two years all you really have to do is keep the child alive and you are doing great. At the time, I laughed, because if that were the case then motherhood would be so simple but I am quickly learning that even that basic piece of advice is out of my control. 

My sweet Aila goes straight for everything that can harm her. She wants sharp objects, power cords, and tiny pieces of anything that could get stuck in her throat. She would rather be in the kitchen than in her pack and play and loves to sit on any ledge and roll herself right off of it. It's amazing how quickly my hand can shoot out and catch her head before it hits the floor. Even in all of this I feel like I have some control, but not so last monday. 

We got in the car at 8:30 in the morning. Stuart held Aila as much as possible so that she wouldn't think about eating. We entered the hospital and it was lovely. Obviously CHOC knows its children. We filled out the paper work and we waited. When we were finally called back Aila was given three different toys to play with as they checked her vitals. We were asked more questions and then it was time. I went into a room with Aila and laid her dow, holding her little arms as she freaked out while a mask was put on her face. In a minute she was out, the doctor covered her face and I was asked to leave. Tears streamed down my face as I went back to Stuart and we were escorted up to the third floor to wait. For two hours I had absolutely no doubt that I had no way to keep her alive. Stuart and I prayed as well as many others for Aila's safety. 

The waiting room was beautiful, painted in cheerful colors, beautiful displays, a place for littles to sit and play and a therapy dog making its rounds. I appreciate all the effort CHOC has put into its building but the anxious parents peppered throughout the room staring at a monitor that told the progress of their child, reminded us all why we were there. I was fixed to the screen as it showed that Aila went from "pre-op" to "in progress" and finally "recovery". It was weird having Stuart there with me looking at that monitor waiting for Aila, when earlier that year I had Aila with me, waiting for Stuart. 

Aila was irate when we went to get her but I couldn't help but smile when I took her from the nurse and into my arms. She calmed down quickly but in the process managed to take off every wire that was hooked on to her chest and toe. The nurse smiled and said she looked like she was doing fine and we wouldn't  have to reconnect her. We were so happy to take her home. It took about an hour and she was back to her happy self. 

Thank you so much for all the prayers and kind words. We appreciate them so much! You all have been a blessing to us. Now we wait until the 15th to talk with the doctor.

Side note: Stuart asked for a copy of the MRI and we looked through it when we got home. The mass looks crazy but it was crazier to see her brain and her teeth! We could see all her teeth in her head!! So weird!