Happy Thanksgiving

Well, here we are Thanks giving. We are Thankful Jimmy's MRI of the brain was the same. Stable. No tumor growth. We took a sigh for a little while until, they told us that his brain damage from the tumor may be whats causing the problem with his moods. He has been skittish and aggitated. The problem most likely is in the tumor bed. The cisterna magna. Inside the cerrebellum. This area is prominent, which means its larger. Spinal fluid drains thru it ok but there is just a space............In kids with Joubertte's syndrome and Dandy Walker syndrome, where they are born with mal-formations in this area, behavioral changes are evident too. (The same things Jimmy experiences. How the kids get to this point is different but the result is the same). So, its pretty much brain damage and we knew that he had some. But, the realization that it is affecting him more as he gets older is sad. He will need a mood stabilizer. Some type of drug to keep him on an even keel. There are so many but as one nurse put it, we tred into uncharted territory now. He may have to do trial and error before we find the right drug or combination of drugs. So onto life now. He is on ativan for now to kind of keep him nicey nice. But its a temp. thing. He is most aggitated when he cant communicate to us what he wants or needs, or he's scared, or he is ill, or in pain. So, we have to watch him closely to help understand him. He is still so sweet and I love watching his eyes wide open and mouth open when he watches tv with us in the evening. His fav. blanket draped over the top o his head guarding his ears. We love when he gets sleepy and his eyes droopy and he drifts into sleep. He is so peaceful. His little mind resting. His ear (the one he had problems with over the summer) is acting up again. Looks like its infected again, so we started him on the ear wash and drops. This could be bothering him too, so we jumped on it, as soon as we saw it was ozzing again, we called the Dr. So, all in all thats about it. I'll be cooking here, so must go and organize my things for the big cook off. :0) May everyone have a blessed and safe and Happy day. Love, Lin N Fam

Speedbump.......

I called this update speedbump, because Its like we sped to another diagnosis with Jimmy's latest illness......The culture showed yeast in his urine(?) this is strange, but they put him on an antifungal med. now for 10 days. How yeast got in his urine is unknown....In the meantime he goes in tomorrow for an MRI of his brain to make sure all is well there. He has been cranky and it may all be just his patience has run out with being poked at and prodded by Drs. and nurses. I hope this all clears up and he can get a break soon. He is normally a sweet child. But, when he is sick its different, real different . Because he cannot communicate, he gets angry and we dont want that......so we may be seeing a phychiatrist for him to share some idea's on how to deal with his behaviors when he is sick. Hopefully he'll stay healthy but in this world of germs and diseases sometimes thats not as simple as it seems. So, he may have to be on something like a mood stabuilizer or something.... Jokingly I said to the pediatrician today, there are about 10 people I can think of in our family that need them right now. lol. But we really need to help Jimmy big time. He is getting so big. He'll be 16 the day after Chriostmas but in his mind he is 4. Well, on to tomorrow and the MRI. I'll post after. Love, Lin N Fam.~*

Moving forward slowly.....

Hi everyone! Its been touch and go here. Jimmy is on his second day of antibiotics. He still seems edgy and cranky. Probably due to the UTI. Were waiting for the full report to come in on the urine culture. Then he has his MRI of the brain this week. I hope he is able to get it before the Thanksgiving weekend. The pediatrician called yesterday and said he'd press for it. Jimmy has been looking a little "off" Like something neurological could be wrong. So we're taking a peek thru the wonder of the MRI scan. Right now, as for today, we're just going along our merry way concentrating on the positive. Focusing on Turkey Day. Family, friends and all that we are Thankful for........Love, Lin N Family~*

A visit to The E.R.

Jimmy was in a lot of pain last nite so we took him to the hosp. he had a CT scan of his abdomen and everything was ok, Thank GOD! But they catheterized him for a urine sample and it showed bacteria. He needed so much sedative to get him to co-operate. Poor little guy is still sleeping this morning. He's on antibiotics. They actually started him on Rocepherine last nite. We got home at 2 A.M. We're all beat. Have to pick up his perscription for his antibiotics and then hopefully catch some sleep....I'll update soon. Love, Lin N Fam.~*

who will stop the rain........

When it rains it poors, it seems. Jimmy and I had that bad, bad stomack bug for 2 weeks. Then after it left the building, you are left with a terrible inflammation of the lining of your stomack. How nice, huh? Im walking around holding my side like Napoleon, and Jimmy...poor little guy, just doesnt know what to make of the whole ordeal. Of course he is looking so skinny, so we are pumping him up with Boost drinks. The meal supplements. Thankfully he likes the chocolate flavored ones. But, gosh....he just looks so frail.His Dystonia is buggin him big time (Muscle spasms) He doesnt want to do anything. He ate a little bit better yesterday, so I think that will mean no more hosp. visits. He was hospitalized for this stomack bug for one whole day and had to have fluids, IV. So.....having said that.......we go on. Taking each day as it comes. Hoping he gets over this thing and we can head into the Holidays happy and healthy.I'll be doing the Thanksgiving meal here for the family. My folks will come and also my sister and her family and who-ever else happens by. The secret to all this is .....remember to cook early and make a LOT!! :0) Much love to all and thank you for always stopping by to see us thru the wonder of the Blog. lol. Love, Lin N Family~*