Gracie's First Treatment

  We are home sweet home.. Wednesday Gracie had her first embolization treatment. We have to say it went twenty times better then we imagined it would. Gracie is such a trooper and really did amazing though the entire procedure. The treatment it self took about two hours and then off to ICU she went. Dr. Turner was able to shut down three very large veins. Gracie was hooked up to about 6 or 7 wires and an IV while in ICU and didn't complain one time about it. Okay I take that back, she was very upset when she was not allowed to get out of bed to go use the potty. It took two nurses and Tommy and I to convince her she was allowed to potty in a pull up. Sweet little thing was very upset and cried telling us that she can't potty in the pull up she is a big girl and only potty's in the toilet. Never in a million years did I think that would happen. Especially since she has only been fully potty trained for about a month now.

  After about 5-6 hours in ICU we were told that since Gracie was doing the best out of the whole ICU unit that we were going to need to move down to the step down unit on the 7th floor because her bed was needed for others. Which was a huge blessing because only one of us was allowed to sleep with her in the ICU room and the only thing to sleep on was a chair that didn't recline. No way being 25 weeks pregnant was I going to be able to sleep like that all night so I would have had to sleep in the lobby. But because of our faithful God he made possible for all of us to sleep together in a different room with a pull out couch. About 2:15am when one of nurses came in to check on Gracie and take her temp. she not being very happy that she got woken up decided she was completely over it. From 2:15am till about 5am we watched veggie tales over and over and listened to alot of crying and whining that she wanted the wires out and to go home... Finally falling asleep around 5 we were able to sleep a few more hours before she was up and ready to go. We were able to take all the wires out so then she was out of bed and running all around the room. Full of energy and glad to be out of bed. Needless to say we were discharged short after that because of how good she was doing... So, next treatment is April 27th...

Roughy Toughy....

Thomas is by far the roughest little thing I know. I just told Tommy the other day I would not be surprised if we make our first ER visit before he is two. Monday was an all aroud rough day for him but it never slowed him down. To start off the morning he was out on the back porch with Gracie when he tripped over his own feet (he tends to try and be faster then his feet) and busted his top lip. Cried for a split second and continued on his way. Later that afternoon it only got worse. While I was cooking dinner he and Gracie were outside again on the back porch when I heard a bang and ran outside to see Thomas in his Little Coupe car laying on his side on the ground. He was driving the car around the porch when he decided to try to make it down three steps in the car. Didn't quite work out for him. Then after dinner Tommy and I decided to take the kids for a walk and were going out to the garage when Thomas once again was going to quick for his feet and fell down head first on the one brick step going into the garage. He caught himself before he completly fell so was kind of doing a sort of head stand until I could pick him up. So then he added a brick implant to his forehead to match the busted lip and goose egg of his head. So finally off to the play ground and large field by our house to run and play when of all things Thomas finds a golf ball in this huge field. Before I could take it from him he throws it straight up only to come back and hit him square in the head. He just looked a us with this confused look like what was that. I couldn't quite laughing thinking okay I need to take you home and wrap you in bubble wrap then let you play.

Can't Wait....

We are all very much enjoying this beautiful weather and decided to take advantage of it on Sunday by taking the kids out in the boat. I don't think Thomas remembered it last year so this year he thought it was the greatest thing ever. He was a little too comfortable in the boat and made me a nervous wreck. He was happy running around the boat and leaning over the sides to see the water. We found  little beach area to stop and let the kids play for a while and they absolutely enjoyed it..

Angiogram Results

Gracie did great today, she was such a trooper! The morning started out with a roller coaster of emotions. We could not walk her into the room that the procedure was being done in because it was sterilized.  Therefore we had to leave her before she was sedated which was very difficult.  They were not able to do any treatment today because there was no contrast left after the angiogram.  They have to limit the amount of contrast she receives because it could damage her kidneys.  We now know there are 6 feeder veins supplying the malformation.  The VOGM is rare, so there is not a text book procedure to treat it.  Our doctors are going to consult with other doctor across America.  We were told that when issues like this arise, they like to share test results and have a network of doctors working together and combine everyones experience before determining which way to attack the issue.  The doctors also discovered that one of her jugular veins is closed do to the pressure.  She was very uncomfortable and unhappy when she woke up in the recovery room,(which we expected) but when she calmed down she heard a baby down the hall crying.  She looked at us and offered to take the baby her blanket and passy.  She is so precious.

Though these are not the results we were hoping and praying for, our sovereign God is in control and can heal today just as He could yesterday.  The more we find out, the more evident it is that God is protecting her and keeping her safe.  Please pray for wisdom for the doctors while they are determining a method of treatment.  Also pray that Gracie knows just enough that a 2 year old needs to know and nothing more.  Continue to pray for peace that surpasses all understanding that only comes from the Lord and for rest for our family.  We love each and every one of you all and appreciate your prayers and support! Thank you and God Bless!

Tomorrow's Procedure

Tomorrow is Gracie's angiogram at MUSC. We have to have her there at 6:30am and the procedure will begin at 7:30. Please join with us in prayer for her for the following:

• Good night's rest for her and Tommy & I
• Pray that she will handle the anesthesia well
• Prayer for the doctors treating her
• Prayer that they will find the malformation and it will be contained in one area and they can treat it tomorrow

Also after the MRI Gracie never said a word about the procedure or anything about that day. I am really hoping that she doesn't remember it because of having been sedated. So I pray that when we start the sedation process tomorrow she doesn't remember last time and start to get scared.

Vein of Galen Malformation

     Well, after a long awaited few weeks we have meet with the Pediatric Neurosurgeon at MUSC and found out that Gracie has something called "Vein of Galen Malformation" located in her brain. If you have any medical background you will know that it is a type of arteriovenous malformation or AVM. AVM's are very common and seen all the time. So after meeting with the Neurosurgeon he reviewed and read all of Gracie's MRI results and explained everything to us and in turn recommended us talk to a different Neurosurgeon who specializes in endovascular procedures. This new neurosurgeon informed us that VOGM is very rare and he has only seen it about 10 times. He also told us that he is very surprised that Gracie has not had any other side effects other then her very noticeable facial veins. He said that the most common side effects of  VOGM is congestive heart failure, hydrocephalus, and developmental delays. He also said that Gracie will be the oldest patient he has ever treated. You typically see this in babies who are only days old or weeks old because their in heart failure.
       After hearing this Tommy and I had this overwhelming feeling that God has had His hand on Gracie since the day she was born. The fact that our precious baby girl has this malformation and hasn't had any of those side effects is truly because of the Lord. So from here we have scheduled Gracie to get an Angiogram which is a test where they place a small catheter in her leg and travel through a vein to her brain and inject contrast dye and watch for the flow of the blood and at what pressure it is traveling. We are praying that during this test the doctors find the malformation in one confined area and are able to block off the blood flow.  Thank you so much for all of your prayers, phone calls, emails and text messages it has meant the world to Tommy and I.

Quick Update

The pediatric neurosurgerons nurse called me today to let me know that the doctor has reviewed all of Gracie's films, medical records and MRI results and would like to see her next Thursday. He will sit down and explain everything to us. We continue to pray for her and for peace and rest for Tommy and I as we wait to find out more information.