Tuesday, January 27, 2009

Go Cardinals!

We have had an amazing last couple of weeks with our special little princess! We had a lot of fun last night painting my tummy and letting Mylee paint freely with washable paints. We always have to keep an eye on her though because she thinks everything goes into the mouth! Speaking of mouth, I made an appointment for her today to see the dentist for the first time. This is a special needs dentist and amazingly it is close to our home! It will be interesting to see how she does.....stay tuned!

The weekend before last we celebrated the win of the Arizona Cardinals as they became the NFC Champions and will be heading to the Superbowl! We are so proud of them!! We enjoyed staying home just the three of us (well 3 1/2 of us). We got a little goofy with the camera, but it was fun anyway!!

Our bags are packed...Mylee will stay at the Benjamin's tonight and Khloe will be born first thing in the morning!! We are all very excited! This post will be sort and sweet. I am hoping the pictures tell it all! We will post again real soon!!



Thursday, January 22, 2009

Time flies.....

So much has happened in the past couple of weeks. Mylee is remarkable and did just fine through her surgery and recovery! We have a new possible diagnosis that goes along with her severe dysphagia. Her ENT believes she has what is called bilateral vocal cord paralysis. He told us he did see them move slightly but that they did not come together as they should when any foreign object gets into that area. Hence the reason she continues to aspirate.

So, the game plan at this moment is for her ENT, Pulmonologist and both speech pathologist that she sees will be conducting another surgery (more like procedure) called something like a video fluoroscopy. I think I have the wrong spelling, but basically they will be looking at her vocal cords more closely. She will have to be under general anaesthesia again, but will be able to be breathing on her own. This will allow for them to look at the cords in order to see them move more freely. We hope that we have a better understanding once we have this procedure completed.

Mylee's ENT was a little apprehensive to go forward with an immediate fix for this problem. And we appreciate his conservative approach! Their are a couple of options that was discussed with us. The first one being a procedure called a gel or foam injection. This material is similiar to botox and would be injected into the cords. However, this risk is that it could potentially cause airway obstruction therefore compromising her airway. She would then need a possible trach in order to breathe. The other procedure is called thyroplasty (permanent solution) and again the risk would be airway obstruction.

Although we are excited that we have some new information about what is causing some of the reasoning behind her dysphagia we are very concerned and need all of your prayers for guidance in order to make the correct decision going forward. We will be anxiuos to know what is found with the upcoming video fluoroscopy. We do not have this scheduled yet because we are waiting on the arrival of baby Khloe. Once we have more information we will post.

Go Arizona Cardinals!! We will be home from the hospital with our new addition just before Superbowl Sunday. We will hopefully have new pictures of the baby and big sister Mylee!


Wednesday, January 7, 2009

New Surgery

Mylee is scheduled for surgery early tomorrow morning. We will head to Children's hospital before sunrise in order to be there at 6am. Surgery is scheduled for 8am. Dr. R will place tubes in her ears and remove both her adnoids and tonsils. We are hopeful this will help with her speech and help control her sleep apnea. He is also wanting to look at her vocal cords to see if for some reason this could be causing her to aspirate. It is slim chance, but we are willing to have any and every doctor look to see if they can find the cause. If he does find an anomally, he has a procedure that he will perform on her. It is sort of like injecting botox into the skin, different material that he will inject into the area that is causing a gap at the vocal cord site. He did say it is a risky procedure, but that he feels it is necessary if this is what is causing her aspiration. We will be requesting constant updates before anything is performed during the surgery. I also have the films from when she had her last bronchoscopy that shows the vocal cords, so I will be asking for him to show us films of the site before he injects anything.

Mylee is our little warrior princess and we know she will pull through this surgery just like she has in the past. We are hopeful we will only be in the hospital until Friday, I will be sure to post updates as soon as I can.

We also had a little bit of a scare last Sunday morning. I started contracting around 4am, I monitored them in my head but started to worry because they seemed to get closer and closer together. I woke Dave up and had him start timing them, sure enough they were about 5 minutes apart. We called the doctor and she wanted us at the hospital for additional monitoring. The contractions ended up being irregular and timed between 4 and 6 minutes apart. I was given medication to stop the contractions and will be on them for the remainder of the pregnancy. We are 34 weeks today. Due to my placenta previa, Khloe Elizabeth will join our family on January 28th....the countdown begins!