Connor turned the big NUMBER ONE, March 19th 2009!!!
We are so lucky to have this little piglet in our lives. Once a preemie, but you'd never know. He weighs 22 LBS, 10oz, it's just a matter of time and he'll catch up to his big brother! They are wearing the same diaper size, how that's possible I'm not sure. He is 30" and doing great.
In fact our little man started WALKING last week, we are so proud of him and he is moving fast. Connor really enjoyed his birthday cake, taking all the frosting off, we're pretty sure he didn't even eat a bit of the actual cake.
Cameron enjoyed this birthday celebration, even if it wasn't for him, as it meant cupcakes for him, anytime we would ask him whose Birthday it was he would say "cake", it's all he could think about-- when do I get some cake!!!
Here is a video montage of some recent pictures of our lovable twosome!
Sunday, March 29, 2009
Tuesday, March 24, 2009
Just plain Mad
That's how I am feeling today, I am fed up with all these Doctor appointments. Today I walked into the Neurologist's office (an hour after our scheduled appt time) with hope, even excitement that I was going to get some answers, but it didn't go that way.
I am tired of dragging Cameron to the hospital going from one Dr to the next for hours on end, forcing him to stay in a 4 x 4 room, telling him "be quiet", "sit still", "don't open the doors", "stay here".
It's exhausting beyond belief, and Dad was even with us today to try and keep Cameron entertained while we waited and waited... and waited. We give Cameron all the sweets in the world so that we can try to talk to a Dr. Today I brought a new "trick" to keep him occupied, a rubber stamp and ink pad. It worked for a good 20 minutes, and then he started stamping his legs. Which I'll be honest we just let him do.
You have no choice but to try anything to keep him happy.
I spent all this time in the past weeks talking to our therapists about questions for the nuerologist (not to be confused with the NUEROSURGEON we see April 7th).
We came into today's appointment thinking we are going to find out all sorts of info about some of Cameron's speech patterns, behavior patterns and so on, but we areleft with NO ANSWERS, much less insight.
This two hour appointment (that made us late for our Orthopaedic appointment) was for all intents and purposes in my book, a waste of time. I had the pleasure of going through Cameron's whole medical history with him from day one, that's always a fun game. Let's refresh, shall we...
Hydrocpehalus
ETV surgery at 3 weeks
Shunt surgery at 3 months
Tethered cord surgery June 2007
Missing right kidney
Diaphragm defect
Heart Defect
Dandy Walker Variant
I am not sure why we had to go through all of this history, since it's all in the computer and in his record, although the Dr. did point out the ETV brain surgery he had while in the NICU was not noted and he even said "Hmmm, that's kind of important" yeah, you would think. God, I hate this place sometimes!!!!
In recent weeks I have had no less than 5 people (ranging from our therapists to our doctors) say to me "he is a child with a lot going on, there are many anomalies" And with that they should add - "So, no I don't have any answers for you"
After an hour of the history he finally took a look at Cameron, I was told he was going to do a "Denver" developmental screen - this did not happen - what he did do was check out his muscles and we saw the Clonus in his feet in full effect. It basically looks like Cameron has two jackhammers for feet. You try walking with jackhammers for feet.
What I have learned from today's neurologist appointment is that in all future appointments I am going to ask that the Dr do their physical assessment of Cameron first, and then we talk. Because waiting for Cameron to get bored in the room and then trying to manhandle him is not going to work. We also learned that there is no significant change in the Brain from the MRI earlier this month, very good and also expected.
What I did not learn today is why Cameron perseverates on doors, why he looks up and to the right/left when playing with his toys instead of looking at them, why his speech patterns are as they are, why he seldom makes eye contact when speaking with him. I realize "answers" was lofty, but some insight would have been really nice.
As for the Spine MRI, it's unlcear from our discussion the results, and no word on the CMG. These are the two most important pieces of the puzzle right now. I didn't plan on learning anything on that front today, so I am not even upset about that, it would have been a bonus.
Now the Dandy Walker bit, about a year or so ago I pretty much stopped talking about this because the Dr's seemed to just "shush" me anytime I mentioned it. Basically saying "don't worry about it". So I didn't. Until there was a small suggestion that the Clonus and his walking patterns were indicative of movement disorder, possibly caused by the dandy walker cyst in his brain. I asked the neurologist about this, we looked at the MRI and he showed me the cyst, and all that, but really had nothing to add other than it's indicative of DW Variant. Grrr... I guess I should just forget about it again. In all seriousness I will bring it up with Neurosurgery once we have the complete picture on the 7th.
We then moved on to Orthopaedics, which we were way late for. We saw a new Dr today, because our previous one moved us to his partner (without even telling us) but given my inside connections I found out this is fine, and even a good thing. We did like her and she wants to see us back in 3 months. We asked if Cameron would always need to wear his leg braces, and the answer seems to be yes. We also need to get them on again during night while he sleeps, we will try. If they don't see some improvement in his left leg there was talk of other options, I asked what those are. I don't like the answers (Serial Casting and/or surgery) so we'll be working on the night wearing. He will also likely always have an abnormal gait.
I don't think we were ever naive enough to think that he would walk like everyone else, and I am sure many of you are saying you can't even tell he walks differently. My response to that is Yes you can and if you so much as brush up against Cameron he will fall like a house of cards. Imagine him in a classroom full of kids, or on the playground, I can't just leave him to his own devices or he will tumble to the ground or burst into tears when startled. Yes, yes I know I should be happy he can walk, and I am. But I am also realizing that things are tough for Cameron and always will be, and that makes me pretty darn sad for my little guy. As he gets older will he be made fun of for his gait pattern? most likely. And well that sucks, because I can only protect him for so long and I can only be by his side for so long.
We then had the muscle test, I had to beg them after waiting 30 more minutes to just get it done. At this point Cameron was walking around the clinic in his tshirt and diaper, I know they were annoyed with us on some level for letting him do this but I didn't care. He can't sit in a tiny room anymore, he's been here since 9:30am and it's now 12:30!
Muscle test complete, a few "weak" notes on the report and we were on our way, thank god!!
April 7th is our next appointment. I hope I find the strength to make it through this last round, after all it holds all the answers, or at least that's my hope, I still have hope.
... and that we find some new "tricks" to entertain Cameron.
I am tired of dragging Cameron to the hospital going from one Dr to the next for hours on end, forcing him to stay in a 4 x 4 room, telling him "be quiet", "sit still", "don't open the doors", "stay here".
It's exhausting beyond belief, and Dad was even with us today to try and keep Cameron entertained while we waited and waited... and waited. We give Cameron all the sweets in the world so that we can try to talk to a Dr. Today I brought a new "trick" to keep him occupied, a rubber stamp and ink pad. It worked for a good 20 minutes, and then he started stamping his legs. Which I'll be honest we just let him do.
You have no choice but to try anything to keep him happy.
I spent all this time in the past weeks talking to our therapists about questions for the nuerologist (not to be confused with the NUEROSURGEON we see April 7th).
We came into today's appointment thinking we are going to find out all sorts of info about some of Cameron's speech patterns, behavior patterns and so on, but we areleft with NO ANSWERS, much less insight.
This two hour appointment (that made us late for our Orthopaedic appointment) was for all intents and purposes in my book, a waste of time. I had the pleasure of going through Cameron's whole medical history with him from day one, that's always a fun game. Let's refresh, shall we...
Hydrocpehalus
ETV surgery at 3 weeks
Shunt surgery at 3 months
Tethered cord surgery June 2007
Missing right kidney
Diaphragm defect
Heart Defect
Dandy Walker Variant
I am not sure why we had to go through all of this history, since it's all in the computer and in his record, although the Dr. did point out the ETV brain surgery he had while in the NICU was not noted and he even said "Hmmm, that's kind of important" yeah, you would think. God, I hate this place sometimes!!!!
In recent weeks I have had no less than 5 people (ranging from our therapists to our doctors) say to me "he is a child with a lot going on, there are many anomalies" And with that they should add - "So, no I don't have any answers for you"
After an hour of the history he finally took a look at Cameron, I was told he was going to do a "Denver" developmental screen - this did not happen - what he did do was check out his muscles and we saw the Clonus in his feet in full effect. It basically looks like Cameron has two jackhammers for feet. You try walking with jackhammers for feet.
What I have learned from today's neurologist appointment is that in all future appointments I am going to ask that the Dr do their physical assessment of Cameron first, and then we talk. Because waiting for Cameron to get bored in the room and then trying to manhandle him is not going to work. We also learned that there is no significant change in the Brain from the MRI earlier this month, very good and also expected.
What I did not learn today is why Cameron perseverates on doors, why he looks up and to the right/left when playing with his toys instead of looking at them, why his speech patterns are as they are, why he seldom makes eye contact when speaking with him. I realize "answers" was lofty, but some insight would have been really nice.
As for the Spine MRI, it's unlcear from our discussion the results, and no word on the CMG. These are the two most important pieces of the puzzle right now. I didn't plan on learning anything on that front today, so I am not even upset about that, it would have been a bonus.
Now the Dandy Walker bit, about a year or so ago I pretty much stopped talking about this because the Dr's seemed to just "shush" me anytime I mentioned it. Basically saying "don't worry about it". So I didn't. Until there was a small suggestion that the Clonus and his walking patterns were indicative of movement disorder, possibly caused by the dandy walker cyst in his brain. I asked the neurologist about this, we looked at the MRI and he showed me the cyst, and all that, but really had nothing to add other than it's indicative of DW Variant. Grrr... I guess I should just forget about it again. In all seriousness I will bring it up with Neurosurgery once we have the complete picture on the 7th.
We then moved on to Orthopaedics, which we were way late for. We saw a new Dr today, because our previous one moved us to his partner (without even telling us) but given my inside connections I found out this is fine, and even a good thing. We did like her and she wants to see us back in 3 months. We asked if Cameron would always need to wear his leg braces, and the answer seems to be yes. We also need to get them on again during night while he sleeps, we will try. If they don't see some improvement in his left leg there was talk of other options, I asked what those are. I don't like the answers (Serial Casting and/or surgery) so we'll be working on the night wearing. He will also likely always have an abnormal gait.
I don't think we were ever naive enough to think that he would walk like everyone else, and I am sure many of you are saying you can't even tell he walks differently. My response to that is Yes you can and if you so much as brush up against Cameron he will fall like a house of cards. Imagine him in a classroom full of kids, or on the playground, I can't just leave him to his own devices or he will tumble to the ground or burst into tears when startled. Yes, yes I know I should be happy he can walk, and I am. But I am also realizing that things are tough for Cameron and always will be, and that makes me pretty darn sad for my little guy. As he gets older will he be made fun of for his gait pattern? most likely. And well that sucks, because I can only protect him for so long and I can only be by his side for so long.
We then had the muscle test, I had to beg them after waiting 30 more minutes to just get it done. At this point Cameron was walking around the clinic in his tshirt and diaper, I know they were annoyed with us on some level for letting him do this but I didn't care. He can't sit in a tiny room anymore, he's been here since 9:30am and it's now 12:30!
Muscle test complete, a few "weak" notes on the report and we were on our way, thank god!!
April 7th is our next appointment. I hope I find the strength to make it through this last round, after all it holds all the answers, or at least that's my hope, I still have hope.
... and that we find some new "tricks" to entertain Cameron.
Friday, March 13, 2009
March Madness: Round 2- MRI
I have learned that if I go into an appointment with Cameron thinking it will be on schedule and go smoothly, the opposite happens...as with our Wednesday MRI.
Cameron couldn't eat or drink after 6:30am, the poor kid held it together better than most. We were supposed to begin sedation at 2:30pm but that didn't happen until 5:30pm. Again Cameron surprised me with how well he did with all the waiting, yes there were some meltdowns, but he was charming the nurses with his door closing antics and running around the sedation room in nothing but a diaper - lucky for us there was no one else in there for quite awhile, which begs the question why the long delay? Who knows, what I do know is a day spent at Children's is one to give us all some perspective. There were many children with cancer waiting for MRIs with us, it breaks my heart. And sitting in the waiting room with other families who are getting bad news, stressed out and near tears. The hospital is filled with some rather unpleasant memories for me as well, so I am going to be very happy when 2012 arrives and there is a new hospital without all the memories.
At 7:15pm I got the call he was out of the MRI and waking up...and he was not very happy. I'm going to be honest I really enjoyed my cuddle time with him after the MRI,it's not often that Cameron likes to cuddle these days as he is becoming rather independent and prefers to do things his "self" as he would say.
After some IV fluids he started to come around and he was CRABBY!!!! I think he had 5 lemonades and shoved a whole bag of animal crackers in his mouth. So we fought our way through the next 30 minutes and then were told we could leave. Since I was solo (Dad was with Connor) we arranged for a wheelchair and a nurse to take Cameron to the door while I dealt with the annoying after hours parking situation at Children's. Apparently he didn't want to leave the hospital and wanted to "play" there, since I had to fight him kicking and screaming to stay in his car seat.
We made it home and pancakes were served to our little man. Little did I know I would be dealing with a "drunk" toddler the following day - that was interesting! Cameron was saying some pretty funny stuff, and couldn't really walk without running into a wall or falling down, so that made my day a bit more challenging. I tried to keep him on the couch with some of his favorite shows, but he had other ideas. We even had a McDonald's lunch after therapy.
Isn't grease usually good for a hangover ??
The good news is this coming week is Dr. and Children's Free, we need a week off before we get rolling again on the Dr. train.
Perfect timing as our other little man, Connor, is turning ONE on Thursday! Time flies... he is not so little either, in fact he's got some serious thunder thighs and belly that is insanely adorable. We are so lucky to have him in our lives.
Look for his Birthday post later this week!
xoxo
Cameron couldn't eat or drink after 6:30am, the poor kid held it together better than most. We were supposed to begin sedation at 2:30pm but that didn't happen until 5:30pm. Again Cameron surprised me with how well he did with all the waiting, yes there were some meltdowns, but he was charming the nurses with his door closing antics and running around the sedation room in nothing but a diaper - lucky for us there was no one else in there for quite awhile, which begs the question why the long delay? Who knows, what I do know is a day spent at Children's is one to give us all some perspective. There were many children with cancer waiting for MRIs with us, it breaks my heart. And sitting in the waiting room with other families who are getting bad news, stressed out and near tears. The hospital is filled with some rather unpleasant memories for me as well, so I am going to be very happy when 2012 arrives and there is a new hospital without all the memories.
At 7:15pm I got the call he was out of the MRI and waking up...and he was not very happy. I'm going to be honest I really enjoyed my cuddle time with him after the MRI,it's not often that Cameron likes to cuddle these days as he is becoming rather independent and prefers to do things his "self" as he would say.
After some IV fluids he started to come around and he was CRABBY!!!! I think he had 5 lemonades and shoved a whole bag of animal crackers in his mouth. So we fought our way through the next 30 minutes and then were told we could leave. Since I was solo (Dad was with Connor) we arranged for a wheelchair and a nurse to take Cameron to the door while I dealt with the annoying after hours parking situation at Children's. Apparently he didn't want to leave the hospital and wanted to "play" there, since I had to fight him kicking and screaming to stay in his car seat.
We made it home and pancakes were served to our little man. Little did I know I would be dealing with a "drunk" toddler the following day - that was interesting! Cameron was saying some pretty funny stuff, and couldn't really walk without running into a wall or falling down, so that made my day a bit more challenging. I tried to keep him on the couch with some of his favorite shows, but he had other ideas. We even had a McDonald's lunch after therapy.
Isn't grease usually good for a hangover ??
The good news is this coming week is Dr. and Children's Free, we need a week off before we get rolling again on the Dr. train.
Perfect timing as our other little man, Connor, is turning ONE on Thursday! Time flies... he is not so little either, in fact he's got some serious thunder thighs and belly that is insanely adorable. We are so lucky to have him in our lives.
Look for his Birthday post later this week!
xoxo
Thursday, March 05, 2009
March Madness - Round 1
Cameron is a champ! One test done and he did amazing!! This boy is such a fighter. He took the catheter so well, dealt with the repeated filling of his bladder with a ton of blue liquid and he never cried. He came close once, but he held it together. That's our big boy we are so proud of him!!!
We came armed to the lab with an Oswald DVD and extra large sucker - it did the trick!
Cameron is doing great, new words are coming out of his mouth each day it's so nice to hear them. Even today has he headed for the stairs while Connor was napping and said "Connor, Coming!" I couldn't even get mad that he woke him up because it was so cute. And he can now say Connor in full, no more "Ca Ca".
He had a full vision screening and assessment at The Chicago Lighthouse last week - he did great, the Dr said it was probably the easiest patient she has had in a year. Again no tears with the dialting, the eye pressure check, he was a champ! And even better news, his vision is great, for a child with Hydrocephalus his eyes are really good. Often Hydro affects the eyes because of the pressure from the extra fluid. Luckily for us this is not something we need to worry about.
Next week Round 2 - MRI.
We came armed to the lab with an Oswald DVD and extra large sucker - it did the trick!
Cameron is doing great, new words are coming out of his mouth each day it's so nice to hear them. Even today has he headed for the stairs while Connor was napping and said "Connor, Coming!" I couldn't even get mad that he woke him up because it was so cute. And he can now say Connor in full, no more "Ca Ca".
He had a full vision screening and assessment at The Chicago Lighthouse last week - he did great, the Dr said it was probably the easiest patient she has had in a year. Again no tears with the dialting, the eye pressure check, he was a champ! And even better news, his vision is great, for a child with Hydrocephalus his eyes are really good. Often Hydro affects the eyes because of the pressure from the extra fluid. Luckily for us this is not something we need to worry about.
Next week Round 2 - MRI.
Subscribe to:
Posts (Atom)
