I cannot believe how quickly this past month has passed!
We are in the final week of April and so much has happened.
Jonah met with his new neurologist at Cedars Sinai and she accomplished more in our time together than has been done over the past several months. She wants to start a few rounds of testing to see if we cannot pinpoint exactly what is causing Jonah's Autonomic Storms. She ordered a round of Mitochondrial blood work, as far as I can understand this testing takes a look at the cellular make up through out the body. Cells themselves are made up of mitochondria and if the mitochondria are not functioning properly or creating the correct kind of energy, they can misfire and cause problems in whatever part of the body where they might be located. In some individuals, this can be one organ or several, in Jonah's case the neurologist is thinking they may be not correctly functioning in the Autonomic nervous system. After our time together, she also was leaning toward the diagnosis of Autonomic Storms but did not want yet to rule out seizures and after she reviewed our home video of Jonah's last episode on April 1st she said if she were reviewing just this information she would think Jonah was having seizures. Sound complicated? It is. Even this Cedars specialist said with Jonah's long list of issues, it would take time and patience to really figure out what is causing these episodes to happen. She prescribed Jonah an anti-seizure med that can be given at the onset of an episode which should stabilize his heart but with the request that the next episode he have, we get him immediately to the local hospital and set up an EEG just to see if we cannot rule out seizures. She said that perhaps he was going in and out of seizures during these episodes, although the length of time was what confused her most (his episodes last 3 hours or longer). We also talked about testing that actually stimulates the Autonomic nervous sytem to see if an episode cannot be induced but the test itself is painful and she did not want to go immediately to that option. So for now, we have completed the blood work (poor Jonah, it included about 7 vials of blood and a bag of urine that we had to collect). Now, we just wait and see if another episode happens and plan to take him locally for an EEG. Since most of you know what little faith I have in the local health system, I called the one hospital that has pediatric beds and made sure that if we visited the emergency room (no matter the time of day or night) they could perform an EEG. I was told yes they could, I won't trust their results but at least they can be sent to Cedars for review. So, after this visit, I finally left feeling like we were working hard to find an answer for Jonah and this is such a feeling of relief.
Noah had his much anticipated surgery last week at Childrens in Madera. His pyloroplasty was performed last Wednesday and thank goodness his recovery went well. By Friday afternoon (late I should say) he was discharged and we were sent home. I was very happy to sleep in my own bed. Noah was a bit better this time around and not quite so clingy, I think having an adult bed instead of those awful cribs really helped. I was more able to sleep with him (which in turn gave me sleep) and he did not panic as much if I used the in-room bathroom and he could not see me. So all in all, I would say this was one of our better hospital stays and thank goodness it was a short one. He does seem to be eating more and we are hopeful the surgery is working.
Today we visited the local ENT (ear, nose, throat) specialist. Our insurance requires we go local and than we can request a second opinion. I was angry I even had to waste my time and money to see this guy because he does not have a good reputation with good care for children and I do not want someone messing my boys' ears up. Thank goodness after I gently suggested that with all their various problems they be referred to Childrens Madera so that their higher level of care could manage their needs, he agreed. Whoo hoo! So now we wait for the referral to go through and see what the Madera ENT has to say.
Our March of Dimes walk was great. We had a few team members who at the last minute could not participate but that happens when you have little ones, still we enjoyed ourselves and had a couple of moms come out to our big BBQ that we did at River Walk. I was able to get a local donation to help cover the cost of food, which was a nice help. Grandpa Langston was in town to enjoy the walk too.
I have two weeks until I leave for Washington, D.C. I am so excited! Valerie is graduating with her grad degree from George Washington University. My parents are traveling back and we will be out for a week. For my 33rd birthday we are going to Philadelphia, I have never been and I am excited! We had enough Marriott points saved up to secure a room in down town Philadelphia, within 6 blocks of all the historical sites. I also get to hear the First Lady speak at Valerie's graduation ceremony, a pretty neat opportunity. I am looking forward to the break as this winter as been very difficult on all of us, most especially the boys. Grandma Hanna will be coming down from Portland to watch the boys (thanks Linda!) and she will be out for a couple of weeks, that will be fun!
I am also having an 80's party for my 33rd birthday on May 8th. I am pretty excited about hosting a party, it has been some time since I have had a get together so I am hoping for a fun time.
Thanks to all of you who continue to read and follow our blog. Many thanks to all of you who continue to pray for the well being of our sons, your every prayer is being heard and answered in God's way; I have great faith in this.