Recently Ethan and I have been at a Dr a week. If it's not urology it is neuro, if it's not neuro its the ped and so on. This Fri we are going to Ortho to be looked at for AFO's yet again. When we were seen by neuro last week we were told that he is 100% sure E will now need AFO's on at least his right foot if not on both. I dread this appt bc we have done so well for so long and it seems ike such a smack in the face, but I know he needs it and I know that it will be the best thing for him so in the same breath I am all for it. Neuro also told us last week that itt looks like E's spinal cord is tetthering, we will go for our MRI next Thur and if it is we will have surgery to repair it soon. This is eatting at me too..I know these things are expected, and I hate to admit this, but I like to pretend like there is a steel shield around E and that he is protected from all of these things. I guess eventually some things are bound to go wrong. We are also going to follow up with urology yet again to check his right kidney. At our appt last week I was told his left kidney is excellent and so is his bladder and both kidneys are growing great but he now has stage 4 kidney reflux in the right one.
And as for myslef. I went for my sleep study last Thur night, I stopped breathing 19x's which is NOT considered sleep apnea apparently...so now onto the nexr stdy to see why I am always so exhausted and falling asleep at the wheel. : / I went to my cardiologist on Friday and was told i have arrythmia and palpatations...surprise!! Oh well, just something else I have to look after I suppose.
All in all things are still going good. Ethan is talking well now, he is running, climbing, getting in trouble..all the things an almost two yr old should be doing! I will update again soon after his MRI next week, please keep us in your prayers that the teether is A) not there or B) not causing any severe damage to anything
Thank you all!
Thursday, July 21, 2011
Sunday, January 23, 2011
Oh my!
Ethan is becoming more and more active by the day! He is running around everywhere, climbing everything he possibly can, and talking and talking...and talking! There's no mistaking him for a baby anymore (as much as I may want to try at times.) Yesterday I was picking up around the living room, I look back and he had drug his white chair to the recliner and climbed in...then proceeded to watch Sesame Street and eat popcorn puffs lol.
Ethan has began with attitudes. I have been told it is just a stage, a age thing. And that all kids test their moms around this time. It is driving me batty! I tell him no, he screams at me; I pop him, he hits me; I take him to his crib (because its obvious the other two dont work) he bites me. Now tell me why he doesnt do this to ANYONE else? And I am the main one to disapline him. i would think he would listen to me more and not Dad or Nana, but I guess not. I just keep telling myself #1 hes a kid and he WILL learn to listen eventually and #2 this too shall pass lol.
Ethan's peeing has gotten better. It's still not how it should be, but it is better. I am going to go ahead and call the urologist in the morning just to be safe. I know I couldn't live with myself if something happened because I didn't look out for him.I'm thinking a request for urodynamics is what I should be asking for (as suggested by a fellow mama) he has never had one, only renal ultrasounds. So we shall see!
Ethan's peeing has gotten better. It's still not how it should be, but it is better. I am going to go ahead and call the urologist in the morning just to be safe. I know I couldn't live with myself if something happened because I didn't look out for him.I'm thinking a request for urodynamics is what I should be asking for (as suggested by a fellow mama) he has never had one, only renal ultrasounds. So we shall see!
Tuesday, January 18, 2011
To call or not to call
Ethan is having issues with peeing again, it started during the day yesterday and continued on through the night. He is peeing so much that even if I change his diaper every two hours he leaks out. His fluid intake hasn't changed and he is eating the same stuff he usually does. This has happened before, it went on for a few days then magically disappeared. I took him to the urologist the first time this happened and they did another renal ultrasound only to tell me that he still has kidney reflux grade 1 and we'll just keep watching it.
Since clinic I have been thinking a lot about this whole urology thing. I've been asked several times by several Dr's and nurses has he had UTI's and I always say no. To my best knowledge he hasn't. He's never been dx'd with one. But now I'm really wondering...how would i know if he had one? I know a fever is a sign..he's had a ton of those recently, irritability...well that's him most days too. So what else is there? I talked to a lady from SB Clinic today and she suggested that if it continues for a few days to call urology. She also told me UTI symptoms are usually just pain while urinating (which I wouldn't know) fever, and irritability. She also said he may not become irritable from it if he doesn't have feeling there. I know she is right but it shattered my heart. That is one of the many "we don't knows" that I have forced myself to stop thinking about. I am terrified that he doesn't have sensation there, or that this bladder/kidney issue will persist and we will have to start catheing. I know other are in that place, I know it could be 1000x worse. But it is still hard to swollow. I just have to take a deep deep breath and take it one day at a time I suppose.
Since clinic I have been thinking a lot about this whole urology thing. I've been asked several times by several Dr's and nurses has he had UTI's and I always say no. To my best knowledge he hasn't. He's never been dx'd with one. But now I'm really wondering...how would i know if he had one? I know a fever is a sign..he's had a ton of those recently, irritability...well that's him most days too. So what else is there? I talked to a lady from SB Clinic today and she suggested that if it continues for a few days to call urology. She also told me UTI symptoms are usually just pain while urinating (which I wouldn't know) fever, and irritability. She also said he may not become irritable from it if he doesn't have feeling there. I know she is right but it shattered my heart. That is one of the many "we don't knows" that I have forced myself to stop thinking about. I am terrified that he doesn't have sensation there, or that this bladder/kidney issue will persist and we will have to start catheing. I know other are in that place, I know it could be 1000x worse. But it is still hard to swollow. I just have to take a deep deep breath and take it one day at a time I suppose.
Wednesday, January 12, 2011
Climbing!
Let me start by saying that Ethan hasn't been feeling very good the past few days. I think that it is just a cold, but he has been pretty clingy and whiny. I was hoping to take him out to play in the snow yesterday since we missed it on Monday when it first fell, but his nose was just too runny and his cough was too strong. :( Greg and I were both home from work again yesterday and we all just had a nice lazy day.
Around 630 last night I was laying on our bed talking to a co-worker and I saw Ethan walk in the room. He never said anything just walked around so I didn't pay him much attention. Next thing I knew he was on the bed with me pouncing on me!!! That's right- my son who has SB is CLIMBING!! I immediately screamed he's climbing and then repeated it again (you know just in case my husband or co-worker didn't understand my scream lol) I just couldn't believe it! He laughed and played and tackled me for awhile then started saying down. I put him back on the floor and there he went again...to the foot of the bed, climbed onto the laundry basket, then onto the bed. Clapped at himself then said down. We repeated this process until he got tired of doing it! I hate to admit it but my baby is become a little boy.
ST was canceled for today. Ethan's therapist wasn't comfortable driving down our back rds to get here-cant blame her. So hopefully next week we will get released!
Around 630 last night I was laying on our bed talking to a co-worker and I saw Ethan walk in the room. He never said anything just walked around so I didn't pay him much attention. Next thing I knew he was on the bed with me pouncing on me!!! That's right- my son who has SB is CLIMBING!! I immediately screamed he's climbing and then repeated it again (you know just in case my husband or co-worker didn't understand my scream lol) I just couldn't believe it! He laughed and played and tackled me for awhile then started saying down. I put him back on the floor and there he went again...to the foot of the bed, climbed onto the laundry basket, then onto the bed. Clapped at himself then said down. We repeated this process until he got tired of doing it! I hate to admit it but my baby is become a little boy.
ST was canceled for today. Ethan's therapist wasn't comfortable driving down our back rds to get here-cant blame her. So hopefully next week we will get released!
Monday, January 10, 2011
I'm back!
It has been a very long time since I last posted-almost 1yr. So much has happened, so much has changed. Ethan is now 14 months old and running around like a crazy child-that's right I said running! He is so smart that it truly amazes me. He will say things and do things that you wouldn't expect a child his age to do, but that's what makes me so proud to be his momma.
As for all of his medical info, since I last posted we have been to Spina Bifida clinic twice. Had 3 MRI's and 2 CT scans. Amongst those scans they found he does have Arnold Chiari Malformation, they discovered a cyst in his spinal column (the same area they did the myelomeningocele repair) they also saw that he not only has the one cyst in his brain but a lk tctually two. For now we are just watching and waiting. There really isn't much you can do for it except drain them and due to their location Dr. Heneger doesn't want to unless completely necessary. We also discovered Ethan has kidney reflux disease grade 1. For now we are not doing anything for that either, just watching and waiting. At our last clinic (this past Fri) Dr. Levy said once we begin getting UTI's we will begin med's and possibly catheing. At Ethan's 1st clinic (July 2010) I was FINALLY listened to, he would not eat anything. Formula was all i could get in him no matter what we tried. I told the Dr's, I told the other therapists, and I told our Early Intervention coordinator and everyone kept saying give him a little longer. Well there we were at clinic and I was asked how much purees he was eating a day? My answer was simply none. They were all shocked and going crazy. Within a matter of days we had a modified barium study to insure it wasn't because he couldn't eat and then we began Speech therapy for feeding. On our first day of speech Melinda, the therapist, noticed sensory issues and recommended Occupational Therapy. We had Carla come evaluate and sure enough Mr. Ethan has sensory dysfunction intergration (or something of the sort..the whole thing still 1/2 way confuses me!) Fast forward to now, Ethan is eating wonderfully-in fact we can't get him to stop! He is going to be released from Speech therapy hopefully this week, definatly this month! His sensory issues have come a very long way and as of last week he will only be getting OT once a month! We will be going again in July to SB Clinic, for another MRI, and CT scan and for our follow up with the neurosurgeon!
For those that don't know I have been back to work full time at Community Blood Center since March '10. I am no longer a phlebotomist, though I miss it I love my new job as Operations Support. I stay busy ALL THE TIME and it's always something new! Greg is still at TPI for now, hopefully a better opportunity will come along soon.
I promise I am going to actually keep up with my blog this time around, I want to have this to look back at later in life. It's the littlest things that 6 months from now can make you smile!So if you see me slacking, fuss at me! :)
As for all of his medical info, since I last posted we have been to Spina Bifida clinic twice. Had 3 MRI's and 2 CT scans. Amongst those scans they found he does have Arnold Chiari Malformation, they discovered a cyst in his spinal column (the same area they did the myelomeningocele repair) they also saw that he not only has the one cyst in his brain but a lk tctually two. For now we are just watching and waiting. There really isn't much you can do for it except drain them and due to their location Dr. Heneger doesn't want to unless completely necessary. We also discovered Ethan has kidney reflux disease grade 1. For now we are not doing anything for that either, just watching and waiting. At our last clinic (this past Fri) Dr. Levy said once we begin getting UTI's we will begin med's and possibly catheing. At Ethan's 1st clinic (July 2010) I was FINALLY listened to, he would not eat anything. Formula was all i could get in him no matter what we tried. I told the Dr's, I told the other therapists, and I told our Early Intervention coordinator and everyone kept saying give him a little longer. Well there we were at clinic and I was asked how much purees he was eating a day? My answer was simply none. They were all shocked and going crazy. Within a matter of days we had a modified barium study to insure it wasn't because he couldn't eat and then we began Speech therapy for feeding. On our first day of speech Melinda, the therapist, noticed sensory issues and recommended Occupational Therapy. We had Carla come evaluate and sure enough Mr. Ethan has sensory dysfunction intergration (or something of the sort..the whole thing still 1/2 way confuses me!) Fast forward to now, Ethan is eating wonderfully-in fact we can't get him to stop! He is going to be released from Speech therapy hopefully this week, definatly this month! His sensory issues have come a very long way and as of last week he will only be getting OT once a month! We will be going again in July to SB Clinic, for another MRI, and CT scan and for our follow up with the neurosurgeon!
For those that don't know I have been back to work full time at Community Blood Center since March '10. I am no longer a phlebotomist, though I miss it I love my new job as Operations Support. I stay busy ALL THE TIME and it's always something new! Greg is still at TPI for now, hopefully a better opportunity will come along soon.
I promise I am going to actually keep up with my blog this time around, I want to have this to look back at later in life. It's the littlest things that 6 months from now can make you smile!So if you see me slacking, fuss at me! :)
Monday, April 5, 2010
Thursday, March 25, 2010
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