Children’s New Orleans Update

  It was a great trip to New Orleans for the Children’s Hospital appointment last week. Spent some time Thursday with Family and Brian’s first boss and our Church of the Nazarene friend Leo, on Friday after the appointment. One of these trips we need to save up and actually visit the Zoo or the Aquarium! Abigail did great until she realized we were sleeping in the Hotel. She said she wanted to go home! It was nice to get away and spend time together the day before and nice after to visit too. Brynnon’s appointment went well. Doctor has upped the Zonegran dose to 300 Mgs. and requested the Name Brand as being Medically Necessary. Of course the insurance wants us to finish the Generic off first. Once he is on the increased dose and the Doctor has lab results back the plan is to move up on the Depakene next, he is already taking 1250 Mgs. a day. I am a bit nervous about that decision, as his blood levels a few months back were 96 for the Depakene… but it does seem to be the best to keep the extended Tonic Clonics at bay. The Tonic Clonic’s he is having are quick at the moment, and we don’t want that to change, but he is still averaging 4-6 clear obvious seizures a week… Not to mention the questionable Seizures or the ones I do not exactly know how to classify. I was not surprised when I read his EEG report and saw that there were 2 events each night that looked like clear seizures to the Epileptologist that did not read as seizures on the EEG. EEG did confirm he does have Seizures with no clinical signs, as the Neuropsychologist questioned also. I took home a copy of the report, wish I knew what it all meant.   
“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” (Isaiah 41:10)

Abnormal Electroencephalogram due to the presence of:
1. Persistent focal slowing over left occiput.
2. Intermittent to focal slowing over the left centroparietal head region.
3. Intermittent bursty slowing over the left anterior quadrant in sleep.
4. Frequent epileptiform discharges over the right centrotemporal head region.
5. Infrequent epileptiform discharges embedded in the left centrparietal slowing.
6. Infrequent epileptiform spikes over the left occiput.
7. Three electroclinical seizures that apparently arise from the left anterior quadrant.
Clinical Correlation: These findings are consistent with multifocal  areas of potentially epileptogenic cerebral dysfunction including an area of persistent slowing raising the question of underlying structural abnormalities in the occipital head region…. 
 At the visit the Neurologist mentioned the term “Epileptic Encephalopathy.” He did say it’s not Dravet when I asked about Genetic Testing, which I knew from my research. He said we will increase the Depakene and Zonegran one at a time as they are helping, keeping the Trazadone and Klonopin where they are. He wants to bring him in when he gets to a new baseline in seizure control or lack of and do a better MRI with finer cuts to look at the area in the left back that seems to be a hot spot. 
“Delight yourself also in the Lord, and He shall give you the desires of your heart.” Psalm 37:4 

 We came back home Friday night and have had friends from North Carolina here since Sunday. We have had a wonderful week. The boys got to go fishing on Eric’s boat, they had a blast! Caught some Catfish, kept some to give to the non-Kosher eating neighbors! Brandon and Eric got to go to the Bay and into the Gulf of Mexico today. Fishing is planned for all the men and boys tomorrow afternoon also. Abigail, Debbie and I will be going to have Dinner and perhaps we can find something else to get into too! Eric announced this evening that he is giving us his boat and trailer. What a blessing! I suppose if you are stuck in Cajun Land surrounded by water you really do need a boat! I see fishing in the future… Going to be focusing on making fun memories, especially now. It’s all any of us can do really… Make the best out of what you have, remembering that each day is a beautiful gift given from our Creator to do with it the best you can. There are certainly more smiles around since we got Brynnon his 4-wheeler. I know the boat will bring even more. Such a blessing!! So that’s where we are… have no idea where we are going… but I do know one thing for certain… Our Father is with us…

This I recall to my mind, therefore have I hope. It is of the LORD’s mercies that we are not consumed, because his compassions fail not. They are new every morning: great is thy faithfulness.  The LORD is my portion, saith my soul; therefore will I hope in him. The LORD is good unto them that wait for him, to the soul that seeketh him. (Lamentations 3:21-25)


Next week Children’s…

Well… Since the Zonegran was increased, I do see a “slight” decrease in seizures. Counting the definite obvious seizures that were 30 seconds or longer… He has had only 6 seizures in 12 days. Seemed like a lot until I looked at the 12 days before the increase… in which he had 8 definite 30+ second seizures. So… 14 Seizures in 29 days. We have seen much better… but we have seen worse too, so I will choose to be happy about that! May need to bump it up again to see a “honeymoon phase” as they call it… We will meet with the Pediatric Neurologist at Children’s again on Thursday next week. We will talk about the EEG that was done at the end of November, his MRI and what has changed. We will hopefully get to discuss genetic testing, if there is still any possibility that Brynnon’s condition is a genetic defect. We will also be discussing “other options” that couldn’t be discussed over the phone. House has been pretty busy the last few weeks… 

 I installed this great APP for Brynnon’s iPad called Rover. It allows him to do time4learning and other flash based programs for his school work and fun things he enjoys like Animal Jam. So he used it the first week for home school and was comfortable enough to play around on it. He found a book… “Diary of A Wimpy Kid” which he had heard about from his friend that comes and stays the night, or more often than not the weekends 🙂 So he’s looking this digital book with great interest and then it happened…. As if nothing strange or uncommon or different was happening, just as naturally as he would ask me for help tying his shoe… he asked his little Brother Brett (7) to read it to him… It secretly broke my heart for him being (12)asking Brett for help, but it was so touching to see Brett step up and read to him… the love was so big, so bright… It was just so touching… 

This Momma is burnt out with lack of sleep, stress from many sources and Brynnon’s seizures on top. I will be taking some time to get the house organized, get my life in order spiritually as well as physically and focus on the important things starting now. I have been thinking about Brynn and his future a lot. Realizing that I am going to have to take care of him as long as possible and have everything in place for someone great to take over should my life’s purpose be complete. Obviously, I need to drop some weight, eat healthier, rest more and get rid of some of the stress in my life. I intend to make this the year to do just that. I mean it’s bad enough that I am 40 with a 1 year old! I will turn 62 just days after Miss Abigail Sariah turns 21, geeezzzeee…. I quit the biggest addiction I ever had just before my 40th birthday in July, smoking. I have gained almost 20 pounds in doing so though, and it’s not like I was skinny before! Cut calories and exercise I must… Unless I can cut corners and do what seems to be the in thing now and go have gastric bypass! Which I could not afford, so I am gonna have to do it the old fashion way… Good ole diet and exercise. Was talking to a friend a few days ago and she reminded me about the Blood Type Diet. I gave it some thought and I think I am going to go back on it. It did help the Fibro and I know it will help with the weight also. I use to walk 4 miles 4 days a week, before Fibromyalgia kicked my butt… but there has to be exercise I am able to do without causing much turmoil in my poor aching body… I know that not getting adequate sleep night after night is not helping the weight nor the Fibro, but what’s a Mom to do? Stress… oh the stress has got to stop, I know I am on my way to a heart attack and life long blood pressure problems if I don’t nip some of the stress like NOW. Enough is enough… and believe me I have had enough. I am going to focus on changing what I CAN CHANGE, and believe in faith for what I cannot change, knowing my Abba Father CAN.