Sunday, March 23, 2008
We spent a wonderful day at the Heckert's for a shrimp & crawfish boil. See daddy help Jon put the first batch of crawfish out on the table. Mommy made a checkerboard chocolate & mint cake - it was delicious!
As you can see, the mommies made Braden & friend Jackson get in some silly prop costumes, and we got some neat pictures while the azaleas in the Heckert yard were in bloom - the perfect Easter backdrop! When Jackson is asked to give Braden some love, he just snuggles up to him - it's so adorable, as you can see:-)
Mommy heads off to San Antonio for her convention this week, then Daddy is off to Austin the following week, so I will be getting lots of one-on-one time with each of them:-) I know I will keep them busy and that they will miss me much!
Thanks for checking on us,
Monday, March 17, 2008
Happy St. Patty's Day!! We went to the St. Patty's Day parade in Baton Rouge with the Heckert's this weekend. A lot of the parade riders thought Braden and his little hat were too cute. He even caught some beads on his own with his foot:-)
Jackson enjoyed most of the parade. He liked playing with the little hat, but he sure didn't like wearing it, you'll have to agree when you see the picture. Although he is crying crocodile tears, I tell you this picture makes me laugh out loud. He is such a little character.
We got two test results back from Texas Children's. The ionic transfer and microray tests were negative, which is good news, but still leaves us without a diagnosis. We are still waiting on one more to come back, so we will keep you posted. We met with the neuro, and he agreed that maybe it was time to get Braden off of at least one of his epileptic meds, to see if it helps him perk up a little bit without triggering more seizures (oh the joys of epilepsy). In 8 weeks we hope to have taken him off the Keppra altogether, leaving us with the zonegran and the clonazepam. Pray that this new regimen will accomplish both goals for Braden!!
If you live in LA, and get a chance to help us pass some real LA legislation to help special children, please visit: www.thriveinfive.blogspot.com and sign the petition, copy and paste a letter to your local legislator, and review the research behind the mission. We do appreciate it.
Well this weekend we will be celebrating Easter with the Heckert's at their annual crawfish boil. We plan to bring the traditional northern honey-baked ham:-) We should have some cute pics of the boys next week with their bunny ears on, so check back with us soon!
Wednesday, March 12, 2008
Well Braden got the all clear last Friday that his most recent pneumonia has cleared up and his white cell count is down to within "normal" range at 10,000. Lots of people we know are suffering from respiratory infections this time of year, including Nana Wilson who got something called "Adult RSV". So we continue to pray for our other special friends with respiratory weakness who seem to be having similar issues.
This week we head to see our head neuorologist. We will be discussing our medication regimen, but not really much else. As Braden and his brain continue to grow, evolve, and change, so are his seizures and their patterns, so every week brings a new "normal". We are adapting to learning to live with the constant change, but as some of you know, it's still hard to watch him have seizures every single day of his life.
The pictures are of Braden and his new bunny that our adopted "Grandma Glass" (Jackson Heckert's grandma) bought her adopted "grandson" (Braden) for Easter:-) He was really checking that little animal out.
He is slowly getting more "vocal" about his needs and wants. Just when Latacia can't figure out what he's fussing about, as soon as she moves him to his favorite chair to sit among the other kids, he becomes his usual mellow self. Maybe he likes being around the other kids, or maybe it's just a chance to hang near his "bodyguard" Jazmyn... she makes sure the other kids don't bug him too much, but she must have her kiss to Braden's head each morning and stroke his curly hair, and checks on him every half an hour or so taking a break from her busy play schedule. She usually isn't so happy when the speech therapist shows up, because they are bugging her Braden and according to her, they need to leave her Braden alone, because "he doesn't like that". It amazes me that even a four-year-old can discern his facial expressions!! :-)
We plan on spending St. Patty's Day and Easter Sunday with the Heckert's, so we will have some fun pictures to share next week!
Love to all,
Tuesday, March 04, 2008
Braden had the pleasure of hosting his godparents two weeks ago, uncle Brian and aunt Jenny. Aunt Jenny read him bedtime stories and napped with him while she got her rest growing us a cousin for Braden. One of the neatest moments of their time her, was that when Jenny was holding Braden, his little cousin was kicking him and somewhat "claiming his own territory". Uncle Brian told him stories about building stuff for outer space, and surprisingly he didn't go to sleep:-)
Last week we traveled to Houston to meet with a genetics doctor who specializes in mitochondrial disorders. After much discussion about Braden's gradual progress over the past two years, we are less certain that he suffers from a disorder of this nature. However, they took blood to run tests for some other things to look at genetically. Some of it is over my head, but from what I understand they will be looking at "micro-rays" on the DNA which looks at little spots of extra or missing information, they will be looking for similar information on his "X" gene, and also looking for information on transferrence of some nature (wish I had more to share, but this one was kind of over my head). Once these tests are back in about 6 weeks, we will be able to decide if a muscle biopsy will be in our future or not. We have decided at this time not to pursue it on it's own, since Braden would need anesthesia & he doesn't do too good coming off of it, so if an opportunity arises for us to do it while he is already intubated, we will do that. Otherwise we will hold off indefinitely.
So the picture of the dancing pigs are statues in the Clinical Building at Texas Children's Hospital, where Braden's genetics doctor and neurologist have their offices.
This past weekend Jackson and Braden got together to take some Easter photos together - so be looking forward to those in the coming weeks.
Yesterday we were diagnosed with yet ANOTHER case of pneumonia, this one more severe than the last, as his white cell count was very high at the 25,000 level (normal is 8,000 - 12,000), and a mere 2,000 shy of a forced PICU admit. We have convinced our team to once again treat him at home, however, we are on strict orders to bring him in should we not see adequate progress - so please keep our little fighting Braden in your prayers for a quick recovery. We will be reevaluated on Friday.
Thanks for checking in on us!