Ok, so you know when you have those reality checks....like when you know something is just not going to change, and you have to accept the way it is? I guess that is what this post is....I guess.
Confession: I hate to update my blog, becuase its always heavy news, and putting it on "paper" is so final. You know. Like so final. If i dont realize this problem on paper, it wont exsist.
I think i am just going to summerize all of Jases symptoms and issues and see what happens. It might make me feel better....who knows???:)
Jases head:
Jases head is now 53.5 cm. at 16 mo old that is REALLY BIG!! So understanding our latest MRI report, and a 2nd opinion from radiologiost, Jase has a Chiari Malformation of 9mm. That is a pretty signifigant measurment. 9mm is alot. He has enlarged ventricles, Left more so than the right, but now they are in better porportion to his head size. What does that mean? I dont know. I guess since his head is huge, the ventricles are not as big as they used to be in comparison to his head?? Make sense...i know, me either.
He has an adult sized vein that runs along the top of the head. (not there previously at 6 mo.) The Vein of Troler. Yes very frightning, I am terrified of the risk of stroke or something bad. Our Neurosurgeon was so confident that none of this is causing a problem for Jase. He was delayed at birth, and so Chiari is not to blame. *sinking pit in stomach and i cant breathe....*
He DOES NOT have Hydrocephalus. One thing Neurosurgeon made clear.....NOT HYDRO. So I guess he does not have hydro.
****I have forwared on Jases MRI reports to 3 of the top Chiari surgeons in the nation. They all emailed me back the same night as my inital Email and are curious to see his records. Dr. Lazareff in UCLA, Dr. Frim in Chicago, and Dr. Dobyns in Seattle. I should be hearing from them each SOON*********
SWALLOW STUDY: Jase aspirates liquids into his lungs when he drinks. My amazing pulmo knew this from the first day she saw Jase one year ago, and we now have confirmation through a swallow study, and all the other symptoms when he eats. This could be from the Chairi, (that is known to have swallowing issues) or from Low tone? He did have Larangomalacia (floppy airway) but ENT said that has resolved itself. Anyhow, because he chokes, coughs, watery eyes and "wet vocal quality", lungs sound junky, and has to come up for air after every few sips, we know he is having trouble. We thicken his liquids, and hope he is ok with food. We just have to watch him carefully and hope it doesnt' get worse. If it does, the Chiari could be getting worse.
SLEEP APNEA: Jase had 1st sleep study in Nov. and it suprised me. He has a VERY high number of periodic Limb Movments. I had never noticed any movment with hands/arms feet/toes when he sleeps, so that was suprising to me. Although now, he twitches in his sleep. Fingers/hands move alot, and toes/feet and sometimes legs. A concern for seizures in his sleep. We will assess that at next sleep study, Mar 29. I worry that is getting worse.
Jase had 116 obstructive breathing events, 54 hypoapneas, 22 central apneas, and some use of using intercostal muscles to breathe. REPORT: moderate to severe level of obstructive sleep apena. Suggestion Remove Tonsills and Adenoids.
We removed "HUGE" adenoids and enlarged tonsils.
REFLUX
REACTIVE AIRWAY DISEASE aka ATHSMA:
6 mo EEG: slightly abnormal, intermixed slowing not clear of signifigance.
HEART: Murmur and slightly enlarged heart. Murmur was heard, so had EKG. One hospital said heart mildly enlarged, Primary Childrens reviewed and said it looks to be fine. I hope it is fine. I still worry about that. Murmur is innocent.
Jase was born with a Strange birthmark on his lower shin. It is red and blotchy. Seems to be lightning.
Found Low growth hormone in blood over this last stay. Something to watch.
Jase development: Jase has now reached "severe delay" in his reports. He is able to sit and roll. He can get out of sitting by droping his head, but is not able to get into sitting yet. He can stand if leaning on something. His leg strength has gotten SO MUCH STRONGER! He is still working on balance. and moving those feet to try to walk.
As of Last week, he will lay on his back and arch like a worm and slide backwards on the top of his head to try to get around. Its so cute to see him try to problem solve:)
He no longer says Ma, or gives Kisses, or Claps like he once did. That is troubling as he may be losing skills. That would not be good.
NOW I CAN: I am so excited for NOW I CAN! http://www.nowican.org/. They are going to help jase with everything. It is a 3 week session, 5 days a week, 4 hours a day. Because Jase has fatigue issues and lethargy, I am curious to see how long he can last. He has always had "hypotonia" but it seems to be getting better.
I am done.
love you all.
Confession: I hate to update my blog, becuase its always heavy news, and putting it on "paper" is so final. You know. Like so final. If i dont realize this problem on paper, it wont exsist.
I think i am just going to summerize all of Jases symptoms and issues and see what happens. It might make me feel better....who knows???:)
Jases head:
Jases head is now 53.5 cm. at 16 mo old that is REALLY BIG!! So understanding our latest MRI report, and a 2nd opinion from radiologiost, Jase has a Chiari Malformation of 9mm. That is a pretty signifigant measurment. 9mm is alot. He has enlarged ventricles, Left more so than the right, but now they are in better porportion to his head size. What does that mean? I dont know. I guess since his head is huge, the ventricles are not as big as they used to be in comparison to his head?? Make sense...i know, me either.
He has an adult sized vein that runs along the top of the head. (not there previously at 6 mo.) The Vein of Troler. Yes very frightning, I am terrified of the risk of stroke or something bad. Our Neurosurgeon was so confident that none of this is causing a problem for Jase. He was delayed at birth, and so Chiari is not to blame. *sinking pit in stomach and i cant breathe....*
He DOES NOT have Hydrocephalus. One thing Neurosurgeon made clear.....NOT HYDRO. So I guess he does not have hydro.
****I have forwared on Jases MRI reports to 3 of the top Chiari surgeons in the nation. They all emailed me back the same night as my inital Email and are curious to see his records. Dr. Lazareff in UCLA, Dr. Frim in Chicago, and Dr. Dobyns in Seattle. I should be hearing from them each SOON*********
SWALLOW STUDY: Jase aspirates liquids into his lungs when he drinks. My amazing pulmo knew this from the first day she saw Jase one year ago, and we now have confirmation through a swallow study, and all the other symptoms when he eats. This could be from the Chairi, (that is known to have swallowing issues) or from Low tone? He did have Larangomalacia (floppy airway) but ENT said that has resolved itself. Anyhow, because he chokes, coughs, watery eyes and "wet vocal quality", lungs sound junky, and has to come up for air after every few sips, we know he is having trouble. We thicken his liquids, and hope he is ok with food. We just have to watch him carefully and hope it doesnt' get worse. If it does, the Chiari could be getting worse.
SLEEP APNEA: Jase had 1st sleep study in Nov. and it suprised me. He has a VERY high number of periodic Limb Movments. I had never noticed any movment with hands/arms feet/toes when he sleeps, so that was suprising to me. Although now, he twitches in his sleep. Fingers/hands move alot, and toes/feet and sometimes legs. A concern for seizures in his sleep. We will assess that at next sleep study, Mar 29. I worry that is getting worse.
Jase had 116 obstructive breathing events, 54 hypoapneas, 22 central apneas, and some use of using intercostal muscles to breathe. REPORT: moderate to severe level of obstructive sleep apena. Suggestion Remove Tonsills and Adenoids.
We removed "HUGE" adenoids and enlarged tonsils.
REFLUX
REACTIVE AIRWAY DISEASE aka ATHSMA:
6 mo EEG: slightly abnormal, intermixed slowing not clear of signifigance.
HEART: Murmur and slightly enlarged heart. Murmur was heard, so had EKG. One hospital said heart mildly enlarged, Primary Childrens reviewed and said it looks to be fine. I hope it is fine. I still worry about that. Murmur is innocent.
Jase was born with a Strange birthmark on his lower shin. It is red and blotchy. Seems to be lightning.
Found Low growth hormone in blood over this last stay. Something to watch.
Jase development: Jase has now reached "severe delay" in his reports. He is able to sit and roll. He can get out of sitting by droping his head, but is not able to get into sitting yet. He can stand if leaning on something. His leg strength has gotten SO MUCH STRONGER! He is still working on balance. and moving those feet to try to walk.
As of Last week, he will lay on his back and arch like a worm and slide backwards on the top of his head to try to get around. Its so cute to see him try to problem solve:)
He no longer says Ma, or gives Kisses, or Claps like he once did. That is troubling as he may be losing skills. That would not be good.
NOW I CAN: I am so excited for NOW I CAN! http://www.nowican.org/. They are going to help jase with everything. It is a 3 week session, 5 days a week, 4 hours a day. Because Jase has fatigue issues and lethargy, I am curious to see how long he can last. He has always had "hypotonia" but it seems to be getting better.
I am done.
love you all.
3 comments:
Ambs, I know I've said this before but your family and especially little Jace is in our prayers.
So many things that you have gone through we have also gone through but you have had to go through so much more. (does that even make sense?)
It's SO hard having to watch your child go through crap like that! And I can't imagine not having any answers!! Ahhhhh!
DO you ever watch that show "Mystery Diagnosis"? Well, if not, you should. Every time I read your posts I think someday Jace could be on that show!!!
Anyway, my offer ALWAYS stands if you ever need anything!!
Just in case you deleted me my # is 8-01-471-3052. Call, text, whatever! I'm not too far from you and I'd love to help in any way I can!!
Luvs!!!
Sorry, me again. I was just searching stuff and came across this...
Canavan disease is an inherited disorder that causes progressive damage to nerve cells in the brain. This disease is one of a group of genetic disorders called leukodystrophies. Leukodystrophies are characterized by degeneration of myelin, which is the fatty covering that insulates nerve fibers.
The signs and symptoms of this disease usually begin in early infancy; however, the course of the condition can be quite variable. Infants with Canavan disease typically appear normal for the first few months of life. By age 3 to 5 months, affected infants begin having problems with development, including a delay in motor skills such as turning over, controlling head movement, and sitting without support. These infants typically also have weak muscle tone (hypotonia), unusually large head size (macrocephaly), abnormal posture, and intellectual disability. Feeding and swallowing difficulties, seizures, and sleep disturbances may also develop.
Have you heard of it?? Anyway, some of it sounded like what Jace has but I'm not sure if ALL of your kids would have this.
Sorry, I hope I'm not annoying you! =)
Oh my not at all!! We need all the suggestions we can get, and you never know what will lead where! Thanks so much and we are excited to come and see your new neptune park!
Ill be in touch!
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