MRI and the results....

Yesterday was Beau's second ever MRI.  Thankfully Beau's Aunt Gabbi was kind enough to drop off a container of trucks and cars that cousin Lucas wanted to give to Beau from his own collection.  As you can see from the picture, Beau was very excited for the new toys and it made our drive down and time at the hospital, a little easier on him. 

We arrived bright and early at the University of Iowa for the test.  We were blessed with a visit from our awesome social worker, Jim shortly after we got there.  He always checks on us and makes sure we don't have any needs he might be able to help us with.  Beau was doing well at this time - around 9 AM - as he hadn't had anything to eat or drink after midnight.  He was starting to sign "drink" while we were in the lobby waiting for the MRI but otherwise he wasn't grumpy or crabby at all.  A sedation team nurse came out to the lobby to visit with us.  When I looked up to see him I recognized him as the sedation nurse we had, had for Beau's first MRI two years ago.  His name is Roger and I immediately said to him that he was the one who had been there for Beau's initial MRI.  He checked the computer and found that I was right.  I reminded him that I would never forget that day and would never forget the doctors and kind people that were a part of it.  Roger is probably in his fifties and is just amazing with kids.  He was so good with Beau.  He checked veins all over his little body and put numbing cream on several locations. 

After about 30 minutes, time enough for the numbing medication to take effect, Roger came back out and got us.  At this point, Beau was catching on to the fact that once again people in white coats and scrubs were surrounding him and it might be painful.  He started to panic and was pretty upset.  Roger got the IV in his hand on the first try but Beau was hysterical.  He doesn't usually get that way - especially when the hand was numbed.  Heck, this poor kid has had so many needle pokes and tons are without any numbing cream and he does fine with them - better than I would!  As Roger put it, unfortunately Beau has been around this type of stuff so many times, he knows what's coming and it's starting to scare him. 

Roger got the first dose of medication into Beau.  It took about 7 minutes and Beau was asleep.  It made him upset as the medication went in and he fought the drug but eventually he was asleep.  He made the cutest little cooing noises as he lay there in my arms sound asleep.  We waited a few minutes and I stood up and laid him on the bed to transport him to the MRI.  It was like he sensed the altitude change lol.  He woke up so fast and started screaming and fighting.  I picked him back up and Roger had to add a second dose.  This time he was out for the count.  The radiologist spoke with us and explained a few things to us and then they took him for the test.

After only about 30 minutes, the test was complete and from the waiting room, I could hear Beau's cry.  Sure enough, the doctor came around the corner to get us.  Roger was holding Beau instead of Beau being asleep on the gurney.  Roger said that when he went to transfer Beau from the MRI table to the gurney, he woke up so fast.  Roger laughed because he couldn't figure out how he could wake up so fast with all the medication in him.  They transported him upstairs to recovery and Beau fell back asleep.

After about 15 minutes we woke him up to see if we could get him to drink so that the IV could be removed and we could go home.  He took his drink and out came the IV.  It was time to head home!

Above is a picture of Beau shortly after we got into the car and were driving home!  He is out and super pale!! He's one tough kiddo though and we were so proud of him.

Today I received a call from a nurse in neurology at the U of I.  The preliminary report was back from the radiologist.  There weren't any new findings on this MRI or any changes from his initial MRI from 2 years ago.  This is somewhat expected, as Dr. Joshi had warned us that she may not be able to see cortical dysplasia on an MRI.  She had said that if she didn't see it on the MRI, then she would order a PET scan.  Now I wait to hear from Dr. Joshi and I look ahead to another test.  All of these tests are required anyway if surgery becomes an option or recommendation.  There is a series of steps and I guess we need to look at this as Step One in the series.  I wasn't sure how to feel when the nurse told me the results.  Relieved that there is nothing new on there?  Yes.  Disappointed that they didn't see something that could be the cause of the seizures and might be fixable?  Yes.  Understanding of the fact that the MRI might not show the cortical dysplasia and that the PET scan might ultimately hold our answer?  Yes.  I am glad there isn't anything aside from the P-ACC, which we of course already knew about.  I am half hoping though that the PET Scan shows cortical dysplasia that may be surgically fixable.  Or it may show cortical dysplasia, but there may be so many areas affected, that surgery isn't an option.  If surgery was an option and meant that Beau might be able to live life seizure free, wouldn't that be amazing for him?  It's all a bunch of "what ifs" so I guess I can't sit around contemplating until we know the facts.  The pieces of Beau's Medical Puzzle are slowly falling in to place.  Some moments I wish they were falling in to place a lot quicker. 

For today, I rejoice in the fact that no new, major issues were found.  For that, I am grateful and God is good.  Tomorrow we'll worry about Step Two. 

Tomorrow's MRI....

Looking ahead to tomorrow and thinking about Beau's MRI.  This will be his second MRI, his first one having been when he was only 17 months old.  The neurologist said that when the brain is that immature, it is hard to see certain things.  With the increased seizure activity and status seizure she wanted another MRI.  She believes that now that his brain is older, she will be able to see things more clearly.  Obviously we already know he has P-ACC, but she is fairly certain she is going to find cortical dysplasia.  We have mentally prepared ourselves for that but if the MRI shows something additional, I'm not sure how we'll react.  I guess we'll react like we have with everything else.  We'll listen, take it all in, ask questions and move forward.  After all, not matter what, God designed Beau's brain in such a rare and special way that it's made him an incredible and loving little boy.  The sedation team will meet with Beau around 9:40 AM tomorrow.  They will get him ready for the test, put him under anesthesia and then the MRI begins around 10:30.  They expect it will last until at least noon and then he'll be in recovery.  We are going to have one hungry little boy when he wakes up!  It will be a day or two before we'll get the results so we'll work on making it through tomorrow and worry about the results later.  If the neurologist doesn't see what she needs to see on the MRI, we will go back at a later date for a PET Scan. 

This photo is of Beau's brain at 17 months on MRI.  It will be interesting to see the difference in the image with the new MRI.  It's all in God's hands and we are just happy that we will be filling in some more pieces to Beau's medical puzzle. 
Beau will just be happy because he'll get to have a lazy day, we'll get him Subway when we leave the hospital AND he'll get a new car/truck toy as a present!  Prayers for a good day tomorrow!

Beau's Baby.....

We have a new "baby" in our house this week.  This new "baby" is a doll from the 50's that Beau found at Grandma Carolyn's house.  He's seen her at grandma's house for quite some time, sitting in the closet, usually afraid of her.  But on Tuesday, that all changed and Beau wanted to take the baby from the closet and play with her.  We all sort of wondered about his sudden interest in this doll.  She's a bigger doll and wears a sweater and pants and a diaper.  That afternoon when I picked him up from Carolyn's house, he made sure that I met his baby, held his baby, patted his baby's back and changed her diaper.  Oh yes, I had to do it all and then he wanted me to bathe her!  Needless to say, we weren't leaving grandma's house that night without baby.  He wanted me to hold her in my lap while driving - to which I drew the line and allowed baby to sit on the passenger seat next to me.  That seemed to satisfy Mr. Beau and he was ready to hold her once we got home.

For the past several days/nights baby has become a big piece of Beau's life.  I refer to her as Beau's baby most of the time but we also affectionately call her "Shelly" because Beau can make the sound "Shh" and it's the closest to the sound of a name we could come up with for him to say.  He constantly wants me to hold her or he wants to push her around in his stroller, change her diaper, bathe her etc. Bathing her becomes tricky because she fills up with water.  Beau is insistent though that when he takes a bath, baby takes a bath which results in a long period of time to drain water from the doll.  It becomes quite funny because we have to tip baby forward just right so that the water can drain out of the hole in her mouth.  She looks like a fountain.  On one night after bath, I balanced baby over the edge of the tub and used an open drawer from the washstand to balance baby over the tub so that she could drain.  In the middle of the night when I woke up to use the restroom I scared myself half to death walking in and seeing that baby!  The next morning Beau was obsessing over the doll again and I was trying to get both of us ready for work and school.  I was in the bathroom getting ready and he dropped the large plastic doll on my toes - ouch.  I was fed up with the doll and tossed it out of the bathroom into the hallway.  That was when Beau's actions showed me I was a horrible parent lol.  He was so concerned for that doll that he hurried over to it crying and laid his head on top of it.  I immediately felt horrible.  I had thrown this baby that he considered very special and dear to him.  I have since been much more careful with Beau's baby.

It wasn't until later in the week that we solved the mystery of the ever important doll.  At school, on Tuesday, the same day Beau had removed the baby from the closet at grandma's house, a new little girl had started in his preschool class.  Carolyn had taken Beau into his classroom towards the end of the week and noticed that the new 3 year old had started.  Our family actually knows this family from church but hadn't realized both kids would be in the same class.  From what I have heard this little girl, who is a triplet, is very small for her age, has Down Syndrome and has lots of delays.  She can't walk so she is carried around by the teacher or pushed in her stroller.  Carolyn said that when Beau went in and saw her, he instantly lit up!  His teacher said that he really loved being around "M" and was always trying to help with her care, for example pushing her in her stroller.  It seems that we have found our explanation for the sudden interest in the doll and wanting to carry her around and take care of her.  He seems to be quite fond of his new classmate and is carrying that nurturing home to his baby doll. 

This little boy never ceases to amaze me with his love and emotions.  Seems like he might enjoy a sibling.......maybe some day.  For now Mr. Beau, you'll have to settle for Shhhhhelly!


Sitting baby on the couch to watch football.

This is how you drain water from baby!

We couldn't leave the house without her for our evening walk.