48 Hours Later
Cassidy's cheeks are a little more swollen today, and is causing her a little more pain.  We did have to give some pain meds today, but she is hanging in there.  We will all be glad when the swelling starts to subside.  Thanks to everyone that took the time to look up airfare and call us with the deals they found.  We are so thankful for such wonderful friends!

24 Hours After Sclero
Mood:  cheeky
The reason I chose cheeky as my mood, is because Cassidy is pretty much all cheeks and lip right now.  However she is doing great.  She can't eat enough and wants to be up playing.  I am having a hard time getting her to lay down and ice her mouth-I guess that is a blessing.  She did great last night, only gave her pain meds 2x and she probably would have been fine with tylenol alone, but I didn't want to take the chance.  She finally came out of the anesethsia early this morning and was upset by her swollen lip, but is dealing well with it.  It is extremely hard to eat or drink.  I have to sometimes feed her through a syringe, but she is trying the spoon.  It is rather messy.  The bed is covered in blood stained saliva and her shirt is covered along with her bear, pillow, and blanket.  With her lip so swollen she cannot keep from drooling.  Yet through all this she has MINIMAL complaints.  We are so proud of her and how she is handling all this.  God has definately prepared each of us in our own way to tackle this milestone.

Out of the hospital and resting
Mood:  chillin'

Cassidy is resting and doing great.  She is complaing very little of pain or anything else.  She is bothered by the fact that her lip is swollen 5x more and she can't close her mouth or swallow easily.  Other than that we are doing good so far.  We are resting at the Devon Nicole House (low income housing for hospital children that we were fortunate enough to get).  We are playing it by ear on returning home.  We don't want to plan something too soon for her.  The hospital was wonderful.  I cannot rave enough on the care and expertise that we recieved.  Continue to pray that she has an easy recovery!

Cassidy is currently in procedure
Mood:  caffeinated

So far our experience here at Children's hospital in Boston has been oustanding.  The staff is wonderful and have gone out of their way to make Cassidy happy and comfortable.  Craig was able to be with her while they put her under.  She was without fear and doing great.  I know that your prayers are working for all of us.  She has been in procedure for about 2 hours.  We can't be given an accurate estimate of time because it all is based upon how difficult it is to access the necessary areas to treat. 

We met with a plastic surgeon yesterday.  The process as planned is what we expected:  treat with sclero and once the lip becomes harder (from scar tissue) then surgery.  This will alow the surgeon to remove and contour her lip better. 

 The confidence and expertise  that we are experiencing here with Cassidy's malformation is so reassuring!

Off to Boston
Mood:  don't ask

We leave for O'Hare airport in 15 minutes and I am sick to my stomach.  I don't talk about my worries or fears much, I push them aside until I have to deal with them.  Tuesday morning will be an extremely hard day for Craig and I, but even more so for Cassidy.  She is aware that she is going to the hospital for the doctors to work on her mouth.  She is not stressed or concerned at this point, which is wonderful.  I owe thanks to Arthur (the cartoon) for that, it helped her understand about going to sleep for the test.  Please pray for Craig & I, but mostly Cassidy.  I do not want her to have a difficult recovery and I do not want to have any complications.

Thank You & God Bless each of you!

Planning Our Trip
Mood:  bright

Well, we are starting to make plans for our trip.  Everyone is asking if we are driving or flying.....we still don't know.  Right now with the price of gas, the cost to drive or fly works out to be about the same- $700.00.  I think we are going to try to see if we can get some last minute flight deals.  We were however able to get into to the hospital provided discount housing.  This will save a bundle compared to hotel prices! 

We are trying  not to think about the actual treatment at this time, but drown ourselves in making the preperations and trying to get in some good family time.

Treatment Scheduled in Boston
Mood:  bright

We decided and felt that God is leading us with Boston for Cassidy's treatments.  We were very happy and comfortable with Dr. Alomari when we visited and feel he has the experience that is needed to treat her.  I was excited when I called for an appointment.  They were able to get her in for her first treatment on June 17th.  I didn't expect to be able to get in so soon.  We will also have a consultation with the surgeon there.  We haven't decided if we will do the surgery here or there, but figured it wouldn't hurt to get an opinion while we are there.  Please keep us in your prayers-especially Cassidy!

 

BAD NEWS
Mood:  on fire

I haven't been able to post this information until now, due to my anger and frustration.  I finally had contact with Dr. Donaldson's nurse (here in Chicago).  She informed me that he spoke with the surgeon, Dr. Bauer, and they have concluded that they want to do surgery and he is no longer comfortable doing the treatments on her lip.  I was outraged by this information.  In my first visit with Dr. Donaldson he was committed to the treatments on her lip and gave me confidence in this.  Because of his confidence I cancelled her treatment date in Boston (that took over 4 months to schedule)

I am against surgery without sclero treatment and I was reassured in my stand against this from Dr. Alomari in Boston when I contacted him with this new information.  Without the sclerotherapy you cannot remove as much of the malformation and it increases the chance of regrowth.

I am now back to square one.  We are praying about this.  We learned in our one trip to Boston, how expensive it would be to have the treatments there not to mention the impractical aspect-however we were very happy with our meeting with Dr. Alomari and his knowledge/experience with this malformation.

Please keep us in your prayers as we begin again!

Results of Surgical Consult
Mood:  not sure
We met with Dr. Bauer and I don't know how to really respond regarding the appointment.  Dr. Bauer pretty much stated that he wanted to do the surgery first, however I have a lot to say about that.  I am not getting on my high horse yet until he talks with Dr. Donaldson.  I will let them talk it out and then we will meet with Dr. Donaldson and discuss what he thinks.  However Dr. Donaldson may want another MRI on Cassidy before we meet with him again.  I am waiting to hear back from his nurse on our next step.  Things are moving a lot slower than I was hoping!

What's Next
We are now just waiting to meet with the plastic surgeon in Chicago.  Dr. Donaldson wants to have Dr. Bauer's (surgeon) input on surgical plans (when during the process, what, and how).  We meet with him on March 5th.  I am a little hesitant.  Dr. Bauer is one of the physicians that stated Cassidy could not have sclerotherapy treatments 3 years ago.  I am however swallowing my pride to see he because he is excellent in his surgical abilities.