I've had many of them lately, not sure why, the thoughts are just racing through my head at warp speed and won't let my brain rest...
Yesterday I forgot the PIN to my debit card. I sat in front of the ATM and stared, dumbfounded that I couldn't remember a 4 digit number that I created! Ultimately it locked me out of the system after multiple tries of the number I could have sworn was it. I had a vision of me being kidnapped and the kidnappers didn't believe me when I said I really forgot my PIN!!!! yes, I am crazy.
Being a parent is tough, special needs or not, we all know this. It's also filled with JOY and lets you be a kid again at times. Today I played hide and go seek with the boys for 20 minutes. Or at least until I ran out of "real" hiding places. Once I used the closet twice I knew the game was nearing it's end. Although Cameron would have done it forever.
The other night I sat down and wrote the following in a journal and I've decided to share it here:
I have not journaled in a long time, outside of the Blog. To be honest the Blog is more "informational" and updates. Seldom do I include my fears, feelings and tears. I share the proud moments, the successes and the hiccups along the journey. I don't share our true fears, the fears we have faced and the fear of the unknown.
As I sit here tonight and I hear Cameron and his Dad talking, laughing and trying to get Cameron to go potty I am amazed at my child. My little boy, who will be FOUR in May, 4? no way. The boy they told me might not survive, would be significantly handicapped, the boy who would need brain surgery among others, the boy I cried over for 3 straight weeks in a hosptial bed waiting for him to come. The boy who had over 20 people I never met witness his delivery waiting for the worst, the boy I never got to hold right after birth, the boy I had to leave at the hospital when it was time to go home.
This boy is a miracle, a joy, he has proved there is hope, there is a reason to keep fighting to make him all that he can be.
There are days when my heart aches for him, but tonight I hear this amazing little boy, this personality, and I love him and all that he is.
It's been a really long week in the most "typical" of ways. I juggle work, the kids, the daily grind. Who doesn't. I feel inadequate in so many ways. I am not able to give my best to anyone in this family, I am spread too thin, I am tired. Who isn't.
Cameron will one day get the official diagnosis of ADHD, among others I am sure. I am trying to get ahead of this and so many other things I know will come our way as he ages. I meet with the Doctors, the therapists, get him extra services, try new methods. They all tell me things to do, "get these books", "try these exercises", "try this brushing technique" "give him extra oral motor work before school" the list goes on...
And you know it's SO hard to follow through on it all. I can't get to half of these things in a week, much less a day.
Cameron has many needs, but he is also an amazing child, one I am blessed to have, and honored he calls me mom. One who tells Dad and Mom on a daily basis "You're my best friend". And you ours Cameron.
We are blessed in many ways, we will keep fighting and working hard and we will also take the time to be a family that just enjoys life with our two boys.
Christmas is days away and it promises to be a good one. Merry Christmas!!
Tuesday, December 22, 2009
Saturday, November 14, 2009
JUMP!
Cameron wants to Jump SOOOOO BAD! And we want it so badly for him.
Anytime he sees other kids jump he has the most amazing laugh, and you can tell he just thinks Jumping is the best thing in the world.
His school PT told me last week the class was working on jumping in hoops, and how badly Cameron wanted to do it. Of course they work with him towards this goal and he sort of jumps, but I think he knows it's not the real thing.
Last night we went to "Family Fun Night" at the school, Cameron LOVED that he got to go into his school at night. I swear this school experience is the best thing in the world for Cameron. The joy on his face when he's in the school is just immeasurable. Several of the kids know him by name and would call out to him, Dad would say to me "who's that?" I had no idea, but Cameron knew them, and they him. I guess this is what happens when your kids grow up, you don't actually know EVERYTHING about their lives. That's a tough one...
Cameron and Connor played all sorts of games, well Connor really just monopolized this one car game, I had to bribe our 12 year old neighbor, who was running the game, to just let him play it 5 times in a row.
Cameron's favorite was the "Cake Walk" - he really just liked being in the auditorium (this is where the Talent Show is Cameron would tell you if he were telling this story!). I got him to actually do the Cake Walk with me twice, but the rest of the time he just loved sitting in the seats and watching all the kids walk around and then JUMP off the stage when the game was over. I would ask him if he wanted to play the game, "I want to Jump!, I want to Jump" So he jumped off the stage with Mom's help and loved it.
Saturday we geared up for a trip to the circus, as we got ready to leave Cameron stood on the front porch and prounounced that he was going to jump off the porch. Oh no you don't!!! This would not have ended well and our trip to the circus would have been re-routed to an ER, interception successful!
The Circus was good, it's the first time we have ever taken Cameron to such an event and he handled it pretty well. I won't lie, at one point we tried to bribe him with Cotton Candy, which he's never had. So he opens it up and says to me "Do we eat this?" I wanted to say I wouldn't, I am sorry to all you cotton candy lovers that stuff is just wrong. But I didn't want to deprive him of the whole circus experience.
He also picked out some "noculars" at the overpriced gift table. We just love that he calls them "noculars", oh and he also likes to look at them from the wrong side.
Cameron, we love you!! We want you to jump, just as badly as you do, one day you will!
Connor is not forgotten, he got to spend the day playing with Grandma Randi and I'd say he really enjoyed it! As we pulled away from Grandma's house after dropping Connor off Cameron asked "Are we going to come back and get Connor?" I think he really loves his brother. I am sharing this with you all so I have it on record in a few years!!
Anytime he sees other kids jump he has the most amazing laugh, and you can tell he just thinks Jumping is the best thing in the world.
His school PT told me last week the class was working on jumping in hoops, and how badly Cameron wanted to do it. Of course they work with him towards this goal and he sort of jumps, but I think he knows it's not the real thing.
Last night we went to "Family Fun Night" at the school, Cameron LOVED that he got to go into his school at night. I swear this school experience is the best thing in the world for Cameron. The joy on his face when he's in the school is just immeasurable. Several of the kids know him by name and would call out to him, Dad would say to me "who's that?" I had no idea, but Cameron knew them, and they him. I guess this is what happens when your kids grow up, you don't actually know EVERYTHING about their lives. That's a tough one...
Cameron and Connor played all sorts of games, well Connor really just monopolized this one car game, I had to bribe our 12 year old neighbor, who was running the game, to just let him play it 5 times in a row.
Cameron's favorite was the "Cake Walk" - he really just liked being in the auditorium (this is where the Talent Show is Cameron would tell you if he were telling this story!). I got him to actually do the Cake Walk with me twice, but the rest of the time he just loved sitting in the seats and watching all the kids walk around and then JUMP off the stage when the game was over. I would ask him if he wanted to play the game, "I want to Jump!, I want to Jump" So he jumped off the stage with Mom's help and loved it.
Saturday we geared up for a trip to the circus, as we got ready to leave Cameron stood on the front porch and prounounced that he was going to jump off the porch. Oh no you don't!!! This would not have ended well and our trip to the circus would have been re-routed to an ER, interception successful!
The Circus was good, it's the first time we have ever taken Cameron to such an event and he handled it pretty well. I won't lie, at one point we tried to bribe him with Cotton Candy, which he's never had. So he opens it up and says to me "Do we eat this?" I wanted to say I wouldn't, I am sorry to all you cotton candy lovers that stuff is just wrong. But I didn't want to deprive him of the whole circus experience.
He also picked out some "noculars" at the overpriced gift table. We just love that he calls them "noculars", oh and he also likes to look at them from the wrong side.
Cameron, we love you!! We want you to jump, just as badly as you do, one day you will!
Connor is not forgotten, he got to spend the day playing with Grandma Randi and I'd say he really enjoyed it! As we pulled away from Grandma's house after dropping Connor off Cameron asked "Are we going to come back and get Connor?" I think he really loves his brother. I am sharing this with you all so I have it on record in a few years!!
Friday, November 06, 2009
The Croup, The Swine & A Powder Keg
It's been a long 7 + days, nothing too terrible, but draining.
Both boys got a nasty virus right after Halloween, little sleep was had, many tears were shed. Cameron is a trooper when it comes to medical stuff so we knew he must be really sick to be crying everytime he coughed. I have slept every night with him since Sunday to keep his temp in check, and ease the pain.
A pediatrcian visit on Tuesday of last week ended with a potential diagnosis of H1N1, maybe Croup for Connor. I learned alot at this visit:
* Dr's are not eagerly testing for H1N1 anymore, many insurances have stopped paying for the actual H1N1 test that costs $600, for the most part if you have flu symptoms chances are it's H1N1, as it's too early for seasonal flu.
*Over 30,000 people die every year from the seasonal flu, Swine Flu is nowhere near this number
*Croup is not nearly as serious for children over the age of 2, so while Cameron was definitely worse off it seemed, Connor was the one in more 'danger'.
He proved that to us overnight Wednesday, he was breathing so loud I seriously got out of bed at one point because I thought someone was talking somewhere?? In the morning he was having some stridor (breathing issues), drooling, with a terrible barking cough. After a discussion with the Pediatrician he sent us to Children's to get him some steroids.
That was fun, all I can say is avoid that place unless it is a serious emergency! Connor got his steroids and we got the hell out of there in less than 4 hours, and considering the ER line that was good.
Those steroids did the trick he was back to Bam Bam status within 8 hours! amazing.
By Friday both boys were still coughing a lot, but playing so that is good. Fevers are finally gone, after 6 days of regular rectal temps I am very happy with this development.
So the "Powder Keg", this is going to go down as one of those things someone in the medical field tells me that I will never forget. The saving grace for this particular Dr., he's amazing with Cameron, very informative with Matt and I and always answers ALL of our questions.
With that disclaimer, he did refer to Cameron's brain as a Powder Keg! Many have asked what is a "Powder Keg" - something in a potentially explosive state. Definitely not a term you'd like used to describe your child's brain.
The last time this Dr. saw Cameron was at 9 months of age (he's the Dandy Walker guy), he reviewed the most recent MRI from March 2009. He saw a few things that stood out to him, I will spare the nitty gritty details.
In short there is some narrowing in the spinal canal, and this could pose a problem and may be an explanation for the problems Cameron was having earlier this year with his gait pattern etc. The cerebellum is wrapping around his brain stem, which is not normal, but might not be an issue? It's all very speculative. Bottom line we are to watch him like a hawk and report any sudden changes in behavior, walking, stability to our team.
The Dr. talked about a potential surgery called a Posterior Fossa Decompression, let me tell you this, Cameron will not be having this unless there is a MAJOR problem.
Most curious is that our current Nuerosurgeon made no mention of any this after the MRI in March, which leads me to believe this might be nothing to worry about. But it certainly has our anxious for our January appt with the team. We'll see.
Tell me if you see a Powder Keg in this image ?
Both boys got a nasty virus right after Halloween, little sleep was had, many tears were shed. Cameron is a trooper when it comes to medical stuff so we knew he must be really sick to be crying everytime he coughed. I have slept every night with him since Sunday to keep his temp in check, and ease the pain.
A pediatrcian visit on Tuesday of last week ended with a potential diagnosis of H1N1, maybe Croup for Connor. I learned alot at this visit:
* Dr's are not eagerly testing for H1N1 anymore, many insurances have stopped paying for the actual H1N1 test that costs $600, for the most part if you have flu symptoms chances are it's H1N1, as it's too early for seasonal flu.
*Over 30,000 people die every year from the seasonal flu, Swine Flu is nowhere near this number
*Croup is not nearly as serious for children over the age of 2, so while Cameron was definitely worse off it seemed, Connor was the one in more 'danger'.
He proved that to us overnight Wednesday, he was breathing so loud I seriously got out of bed at one point because I thought someone was talking somewhere?? In the morning he was having some stridor (breathing issues), drooling, with a terrible barking cough. After a discussion with the Pediatrician he sent us to Children's to get him some steroids.
That was fun, all I can say is avoid that place unless it is a serious emergency! Connor got his steroids and we got the hell out of there in less than 4 hours, and considering the ER line that was good.
Those steroids did the trick he was back to Bam Bam status within 8 hours! amazing.
By Friday both boys were still coughing a lot, but playing so that is good. Fevers are finally gone, after 6 days of regular rectal temps I am very happy with this development.
So the "Powder Keg", this is going to go down as one of those things someone in the medical field tells me that I will never forget. The saving grace for this particular Dr., he's amazing with Cameron, very informative with Matt and I and always answers ALL of our questions.
With that disclaimer, he did refer to Cameron's brain as a Powder Keg! Many have asked what is a "Powder Keg" - something in a potentially explosive state. Definitely not a term you'd like used to describe your child's brain.
The last time this Dr. saw Cameron was at 9 months of age (he's the Dandy Walker guy), he reviewed the most recent MRI from March 2009. He saw a few things that stood out to him, I will spare the nitty gritty details.
In short there is some narrowing in the spinal canal, and this could pose a problem and may be an explanation for the problems Cameron was having earlier this year with his gait pattern etc. The cerebellum is wrapping around his brain stem, which is not normal, but might not be an issue? It's all very speculative. Bottom line we are to watch him like a hawk and report any sudden changes in behavior, walking, stability to our team.
The Dr. talked about a potential surgery called a Posterior Fossa Decompression, let me tell you this, Cameron will not be having this unless there is a MAJOR problem.
Most curious is that our current Nuerosurgeon made no mention of any this after the MRI in March, which leads me to believe this might be nothing to worry about. But it certainly has our anxious for our January appt with the team. We'll see.
Tell me if you see a Powder Keg in this image ?
Halloween Madness
The boys LOVED Halloween, and so did we!!
Cameron screamed and ran to the door everytime there trick or treaters, he was also heard bellowing from the front porch to all in the neighborhood:
"I'M DR. CAMERON!"
Connor was a perfect "Bam Bam" despite the fact that he would barely were the hat, so he could easily be confused with luke skywalker.
enjoy...
Monday, October 26, 2009
It's been too long...
Actually that's a good thing! It tends to mean that we are humming along.
Which we are! Cameron started school across the street from home in September, he loves it. I think he would go 7 days a week if they would let him. He is making some good progress, his speech is really coming along and he is doing a lot more appropriate "pretend play". He loves to pretend it's school time at home and you will hear him talking to his "friends" saying he is the teacher "Boys and Girls" he says out loud and then does clean up time, choice time and so forth. Hard to believe he was barely talking 7 months ago.
We saw Orthopaedics last week, I really like the new Dr., she explains things so well. Cameron has some very loose hips and that is the cause of much of his gait pattern issues. To make it simple most kids would have a 45 degree rotation, he has 80 degrees on his left. This is not a huge issue, and there is still plenty of time to hope this will start to self correct. Down the road there are some other bracing options, for now we are sticking with his AFO orthotics. It was time for a new pair as our guy is growing and so he was re-fitted. He picked out a new pattern for the braces - TRACTORS! I really have no idea why he chose Tractors, because it's his brother Connor that loves them? Maybe it was for Connor, what a sweet brother Cameron is... let's go with that.
Connor is growing and growing, he is within 4lbs of his 3.5 year old brother. He is also very tall. And as cute as ever, he is called "bam bam" around here, thanks to Aunt Amy and Uncle Mike - it's the polite way of saying "meathead".
Loves his trucks, cars, reading books with anyone that will sit with him and he loves to show us his belly.
Connor is also getting a little Speech Therapy, I know many of you are rolling your eyes "he's a boy" "he's a 2nd child" "he'll be fine..." yeah, yeah I hear you and agree but after his evaluation showed a 50% delay we decided it was best to do some EARLY INTERVENTION, we have seen the success with Cameron so we'll be doing a brief stint with Connor. My goal is for him to be discharged by Dec!
Halloween is upon us and we can't wait! Cameron asks every day if it's Halloween yet. You'll have to check back in a week to see what this year's costume picks were. Cameron did select his own...
Happy Halloween to all!
Wednesday, August 26, 2009
Cameron Graduates
How can this be you ask? He just finished summer school?
He officially graduated from Early Intervention (the zero to three program)last week. Oak-Leyden one of his providers for therapy had this really sweet graduation ceremony. Cameron spent the bulk of the time running towards the nearest door, but surprisingly once it was time to line up for the "diploma" he actually let me put his "cap" on and he never lets us put a hat on him! He was really excited to walk up and shake the director's hand. All very cute, in our haste we forgot our Camera. But luckily Cameron's buddy Mollie had far more prepared parents and they took a few shots!
And as soon as our guy Graduates, he is ready for the official start of the school year. Monday the 31st is the big day, can't wait to WALK him over to school, no more bus!!
I have to admit it will be strange to relinquish all of his therapy services to the school and not see what's going on, but I am also a bit relieved of the rigorous schedule we keep. He will continue Occupational Therapy privately as he needs some more intense sensory treatment.
Our last post we mentioned he was going in for the Bladder study, he came through like a champ, and despite getting what seemed to be some pretty bad results on the test turns out there's reason for the M.D. designation!
During the test I asked the nurse how his levels looked, she told me the numbers and they were not good and basically back to pre-surgery levels. I walked out of there upset and proceeded to dive into a funk for about 5 days worrying, researching, basically preparing us for another spinal surgery.
We saw the Dr. a week later and while she agreed the levels were high, she was ok with it. Matt and I just looked at each other like we won the lottery. So yes, for the first few hours after this news I was still second guessing all of it, but am now just fine. The Dr. did discuss putting him on some meds to help with controlling the levels, which could down the line damage the bladder wall, but we agreed that if potty training was ever going to be attempted any medicine would make this impossible.
So now instead of medicine, we are in full potty training mode - this qualifies as one of the joys of parenthood that noone ever talks about! UGH! but he is making progress.
He has been promised this super duper 'garage' that he played with on our recent visit to Michigan at Mimi's house. He and Connor loved this thing and it's the size of an end table! Cameron somehow started calling it the "COASTER" so we now have a "CAMERON'S COASTER POTTY BOARD" in our house to track his progress.
Cameron asks about getting this Coaster all the time, what he doesn't know is it's in the very deep dark back of our basement waiting for him. Dad found it on EBAY, it never ceases to amaze me the things this man will find on EBAY. Recently I opened a box with a "special drinking glass for Sam Adams Beer" - really? I digress...
We had a very nice quick trip to Michigan to see my family, it was jam packed with activity. An amazing water park at our local pool, a fat lip for Connor, a boat ride for Connor and Cameron played with the Coaster - oh and likely cleaned out the toy closet at the Country Club!
We are due back to Urology in January, and hopefully will have mastered potty training by then! Any tips or tricks, we are open to suggestions.
In other news our dear little caboose as Nana calls him, (Connor) is all over the place, the child is a monkey I swear. We never experienced any of this climbing business with Cameron and it's quite the eye opener. I'm so tired of constantly chasing Connor around I don't even have time to process whether I'm happy or sad about this development phase - ha!
One of area of development he's not excelling in is Speech, he basically just babbles and not very much, makes a few approximations, but not much. After much discussion he is getting an evaluation from Early Intervention to see if he needs Speech Therapy, I am sure many feel as I do, we just ended EI take a break. I 100% agree and as great a program as EI is, I have no interest in joining the ranks again! We'll see, he may be only slightly delayed and won't qualify for actual services.
It's been a great summer, I am sad to see my little Cameron go off to school without me for 5 days straight every week. But again, I've got Connor who leaves little time for anyone to process any sort of emotion you might think you might have :)!
We love them both and are blessed to have them. Best of all they both really seem to like one another, hearing them laugh at one another is priceless. Connor must have everything that Cameron has and Cameron is the true big brother "Connor you go play with that toy!"
Right now I don't feel we need any "extra prayers" things are good. But I do have two other close friends with little ones that could use a boost, so please add Ben W. and Evie B. to your prayer lists. We appreciate it!
XO
Monday, July 06, 2009
Cameron goes to School
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Given the amount of time that has lapsed since our last post it's obvious we've been busy!
Hard to believe it's July and that Cameron has only 7 days left of his summer school, I feel like he just started, and I'm not going to lie that 4 hour break I get every morning to spend with just Connor, or work (as I have been doing a lot of lately!) has been VERY nice.
Cameron is riding the bus to/from school everyday. The first few days were rough, tears all around, but he now looks for the bus and is excited. The first day of school dropping him off he had many, many tears but by the time I picked him up he was all smiles.
I think school suits all of us well, they tell me via the "communication notebook" where the teacher and I write back and forth to one another - just like I did as teengager with a one CJD :) at the age of 16 we simply called them "THE notebooks" but now you see as a 33 year old it's a "COMMUNICATION" notebook. Sorry, I digress...
Cameron is engaged, following directions for the most part and LOVES to paint. He does have a one to one aide, it will be interesting to see if this continues in the Fall. He comes homewith one color paint or another on his clothes and an art project to show us, it's cute.
We are looking forward to the Fall program where the therapy is much more intense, right now he's really just getting used to the idea of school and the teacher. In the Fall they will be focusing more seriously on the goals laid out in his IEP. I am very much looking forward to getting the school team involved in his therapy and am hopeful we won't need to continue all three disciplines privately.
Next week Cameron goes in for his CMG - UGH, let's all hope for no "odd" results.
Cameron is talking up a storm and says some pretty funny stuff, two tidbits:
Cameron: "Daddy, I'm wearing my Cubs shirt"
Dad: "Yes, you are"
Cameron: "It's a BEAUTIFUL shirt!"
As you can see the brainwashing starts at a young age. I think I have told that story to everyone I know b/c I think it's hilarious.
Cameron while playing outside in the sand table found a large leaf and suggested to Dad that he use it to make a centerpiece on the sand table??? Yes, you heard me right a CENTERPIECE?
So Dad asks me did you teach himm this? Yes, in our downtime I am teaching Cameron some things you can't do without:
- An easy, delicious go to meal for company, and a Centerpiece to dazzle the crowd!
I have no idea where Cameron dreamed up these two items but I'm just happy he's dreaming!
Connor is keeping us busy, he never sits down, love to be outside and has some serious moves! He is possibly the cutest little dancer I've ever seen. We've progressed from the headbanging, new video to come soon.
Happy 4th to all.....
Wednesday, May 27, 2009
Cameron is Three!
Well I don't know where the last three years have gone, but I honestly can't belive our little guy is 3.
3 means a lot in our world:
- Cameron is now done with Early Intervention
- Cameron will start summer school in June for one month
- Cameron will ride a bus to school (SCARY!!!)
- Cameron will walk to school across the street in September (yippee!!)
- Cameron is now in a big boy bed (mixed emotions on this one!)
- Cameron was officially discharged from Caridology this week after the ECHO showed no leakage and the PFO likely closed (not 100%) but they feel safe to discharge him!!!!
- Cameron is often speaking in 3-4 word phrases now such as the following conversation he and I shared today:
Cameron was playing with some oxygen tubing left behind from Nana's recent stay with us.
(Brief pause in the story: my mother recently had a heart attack after a routine surgery, as a result she is now on oxygen at night. She is doing better and we are VERY grateful she's with us here today!)
Ok back to the Cameron story...so he's playing with the tubes and says
"medicine in Nana's room"
Me: "Cameron they took the machine with the medicine away today"
Cameron: "I need medicine"
Me: "Why, are you sick?" (he has been sick for the last two weeks)
Cameron: "yes"
Me: "what's wrong?"
Cameron: "Bad case of the sniffles"
I nearly lost it, it was so darn cute. He is exhibiting his independence more and more and I swear the day he turned three he became much more difficult! I don't subscribe to the "Terrible Twos" theory, but the "Terrible Threes" I am backing 1000%.
In the last three weeks I have shed far more tears than I ever expected, the transition out of Early Intervention was pretty emotional - saying goodbye to many of our therapists who have been a part of our weekly life for the last year was sad.
Te advocate side of me kicked in for the actual IEP meeting and let me just say I am SO glad that process is over. All now said and done we are pleased with the outcome of the IEP meeting and the plans for the next 3-6 months.
Cameron starts summer school in June,and yes,he will ride the bus with an AIDE to the school as it's about 20 minutes away. I still can't even fathom the idea of seeing that bus pull away from our house with my Baby Cameron on board without me!!! I may need a stiff drink and a support group scheduled for that day!
Most important is that I know Cameron is going to LOVE this experience, so I will focus on his emotions rather than mine!
We had a nice quiet Birthday celebration at home on Friday night, pizza, cake and a few presents. See video below for highlights of how far he has come.
I had a funny moment the other day that I had to share, this is how you know you are the mother of a child with special needs.
I got a call from another Mom asking if I had received the invite to the "Sensory Experience" tomorrow night in Oak Park starting at 7pm. I am racking my brain who is this person, is she a therapist? Is she a friend of one of our therapists? She's talking about "Sensory" so it must be something in our "medical/therapy" world.
In any event I had to politely decline as we had a full day already planned of a Dr. appt at Children's (NIGHTMARE that I am not going dwell on for his bday post) and then Afternoon speech therapy. I felt a little guilty as I thought maybe I should find a way to go to learn more about the sensory end of things with Cameron.
- Cameron is often speaking in 3-4 word phrases now such as the following conversation he and I shared today:
Cameron was playing with some oxygen tubing left behind from Nana's recent stay with us.
(Brief pause in the story: my mother recently had a heart attack after a routine surgery, as a result she is now on oxygen at night. She is doing better and we are VERY grateful she's with us here today!)
Ok back to the Cameron story...so he's playing with the tubes and says
"medicine in Nana's room"
Me: "Cameron they took the machine with the medicine away today"
Cameron: "I need medicine"
Me: "Why, are you sick?" (he has been sick for the last two weeks)
Cameron: "yes"
Me: "what's wrong?"
Cameron: "Bad case of the sniffles"
I nearly lost it, it was so darn cute. He is exhibiting his independence more and more and I swear the day he turned three he became much more difficult! I don't subscribe to the "Terrible Twos" theory, but the "Terrible Threes" I am backing 1000%.
In the last three weeks I have shed far more tears than I ever expected, the transition out of Early Intervention was pretty emotional - saying goodbye to many of our therapists who have been a part of our weekly life for the last year was sad.
Te advocate side of me kicked in for the actual IEP meeting and let me just say I am SO glad that process is over. All now said and done we are pleased with the outcome of the IEP meeting and the plans for the next 3-6 months.
Cameron starts summer school in June,and yes,he will ride the bus with an AIDE to the school as it's about 20 minutes away. I still can't even fathom the idea of seeing that bus pull away from our house with my Baby Cameron on board without me!!! I may need a stiff drink and a support group scheduled for that day!
Most important is that I know Cameron is going to LOVE this experience, so I will focus on his emotions rather than mine!
We had a nice quiet Birthday celebration at home on Friday night, pizza, cake and a few presents. See video below for highlights of how far he has come.
I had a funny moment the other day that I had to share, this is how you know you are the mother of a child with special needs.
I got a call from another Mom asking if I had received the invite to the "Sensory Experience" tomorrow night in Oak Park starting at 7pm. I am racking my brain who is this person, is she a therapist? Is she a friend of one of our therapists? She's talking about "Sensory" so it must be something in our "medical/therapy" world.
In any event I had to politely decline as we had a full day already planned of a Dr. appt at Children's (NIGHTMARE that I am not going dwell on for his bday post) and then Afternoon speech therapy. I felt a little guilty as I thought maybe I should find a way to go to learn more about the sensory end of things with Cameron.
Once I hung up I looked up the Evite, which I did recall receiving but I just passed it by with all the craziness of late. So this "SENSORY Experience" was a jewelry and Mary Kay party at a local restaurant!!! Imagine if I had showed up there tomorrow night all messy from a busy day, Cameron notebook and pen in hand - they would have been like this woman needs some serious help and MaryKay is not going to cut it!
Oh to be a mom who is over "therapied" .....
Happy Birthday Cameron you are THREE and you are the best gift in the world to us!
xoxxoxox
Thursday, April 16, 2009
"I'm Gonna Call Louise"
Maybe she knows the answers to all of our questions? Wouldn't that be nice! I am sure you are wondering what on earth I am talking about...
Cameron LOVES Max & Ruby, he is now acting out some of his favorite parts of the show. Calling Ruby's friend "Louise" is one of his regular past times. It's hilarious, because when you think about it "Louise" is a kind of funny name to hear a 3 year old say. Although Grandma Randi would certainly appreciate it, as it is her middle name :) The other day Cameron acted out this entire episode where Max & Ruby keep missing the bus, he was running to and from the window, checking his "schedule" for the next bus. We love to see this part of Cameron developing, because he really doesn't do a lot of "pretend" play which we've talked about in his therapies. Not to mention it's just funny to see him develop this little personality.
He has also had a word "explosion" it is amazing to hear his vocabulary and not have to rely on pictures to communicate. I recall hearing from someone that a lot changes as they get closer to 3 and he could make some really big leaps, I was like yeah, yeah....and wow, he really is talking...in more than two word combinations - we are hearing some actual phrases and sentences, it's so great. We are less than a month away from his IEP (Individualized Education Plan) with the School and the end of Early Intervention. We are focusing all of our efforts on this transition vs. dealing with more Dr. appointments. It's a relief to know that we aren't due back at Children's until the end of May.
Although we are nervous and stressed about this transition process I think Cameron is going to love school. He asks me at least once a day "Cameron go to school" , he watches all the neighborhood kids walk to school and then we go over to the school/park and he tries to open all the doors to get into the school. I keep telling him just a few more months.
We have come "down" from the tense Dr. drill of the last month and are busy monitoring Cameron's input/output, who knew I'd be doing excel spreadsheets with the title "Cameron Output 2009", this is what I went to college for, really.
I called the Dr. last week to give them the update on his progress, well they have not called me back, let's just say I am not rushing to call them again as I anticipate we'll be going the suppository route, which by the way, apparently many of our readers have experienced the joy of giving them to their children.
Also thanks for all the "shriner" contacts, big help, we really appreciate everyone that reached out to us.
Connor is doing great, he is walking all over the place and is generally such a great baby, well I guess he's not really a baby anymore :( Our PT today asked, "How premature was he again?" Two months - it's amazing we both agreed and how he is just sailing along, let's hope it remains that way for years and years to come. He does this great "dance" whenever he hears music. Basically bobs his head back and forth, it's so funny, we literally can't help from laughing out loud. He also has a future in eating contests we are convinced. The boy ate 5, yes 5 pancakes on Sunday morning!! (yes they were "silver dollar pancakes, but still!) .
I have tried to capture the "calling of Louise" and "Connor Dance" on video below.
Cameron LOVES Max & Ruby, he is now acting out some of his favorite parts of the show. Calling Ruby's friend "Louise" is one of his regular past times. It's hilarious, because when you think about it "Louise" is a kind of funny name to hear a 3 year old say. Although Grandma Randi would certainly appreciate it, as it is her middle name :) The other day Cameron acted out this entire episode where Max & Ruby keep missing the bus, he was running to and from the window, checking his "schedule" for the next bus. We love to see this part of Cameron developing, because he really doesn't do a lot of "pretend" play which we've talked about in his therapies. Not to mention it's just funny to see him develop this little personality.
He has also had a word "explosion" it is amazing to hear his vocabulary and not have to rely on pictures to communicate. I recall hearing from someone that a lot changes as they get closer to 3 and he could make some really big leaps, I was like yeah, yeah....and wow, he really is talking...in more than two word combinations - we are hearing some actual phrases and sentences, it's so great. We are less than a month away from his IEP (Individualized Education Plan) with the School and the end of Early Intervention. We are focusing all of our efforts on this transition vs. dealing with more Dr. appointments. It's a relief to know that we aren't due back at Children's until the end of May.
Although we are nervous and stressed about this transition process I think Cameron is going to love school. He asks me at least once a day "Cameron go to school" , he watches all the neighborhood kids walk to school and then we go over to the school/park and he tries to open all the doors to get into the school. I keep telling him just a few more months.
We have come "down" from the tense Dr. drill of the last month and are busy monitoring Cameron's input/output, who knew I'd be doing excel spreadsheets with the title "Cameron Output 2009", this is what I went to college for, really.
I called the Dr. last week to give them the update on his progress, well they have not called me back, let's just say I am not rushing to call them again as I anticipate we'll be going the suppository route, which by the way, apparently many of our readers have experienced the joy of giving them to their children.
Also thanks for all the "shriner" contacts, big help, we really appreciate everyone that reached out to us.
Connor is doing great, he is walking all over the place and is generally such a great baby, well I guess he's not really a baby anymore :( Our PT today asked, "How premature was he again?" Two months - it's amazing we both agreed and how he is just sailing along, let's hope it remains that way for years and years to come. He does this great "dance" whenever he hears music. Basically bobs his head back and forth, it's so funny, we literally can't help from laughing out loud. He also has a future in eating contests we are convinced. The boy ate 5, yes 5 pancakes on Sunday morning!! (yes they were "silver dollar pancakes, but still!) .
I have tried to capture the "calling of Louise" and "Connor Dance" on video below.
Tuesday, April 07, 2009
Some Answers, Some More Questions
Just as my home state Spartans lost last night, I am feeling a bit defeated as well...
We started at 1pm with the Kidney Ultrasound, I always chuckle to myself when they do this US and they scan his right side like that Kidney is just going to magically appear one day. Of course I really shouldn't snicker about it, but I think it helps to lighten the mood. Cameron enjoyed his ultrasound, he helped the technician move it around and even had "doggie" help out moving it around, it was all rather adorable, as far as Kidney Ultrasounds go.
Our schedule 2pm appointment started at sometime after 3pm, I lost track, which I think is best rather than stewing over the incessant waiting game.
Let me just preface this all by saying that I was truly expecting to walk into the urology appointment and hear that the CMG (icky bladder study) looked stable. Not just because I hoped for that, but because all of our other appointments seemed to be leading to that answer.
Silly Mommy, as Cameron might say. It appears as though we have a new QUESTION/CONCERN/ISSUE - whatever you want to call it... The CMG shows his pressures are a bit higher than September, and the perplexing issue is a strong bowel contraction that shows up on the test. According to Dr. Yerkes, this is not typical and peculiar. Normally she'd chalk it up as constipation, but for Cameron this is FAR from the case. I am going to spare everyone the details of this discussion but I have been charting his bowel/bladder patterns since January and it's not an issue for him.
So you could tell Dr. Yerkes was really confused by this result and wasn't sure what to do, she went out to consult with Dr. Bowman (nuerosurgeon), Yerkes said she doesn't want to put him through surgery for a potential retethering of the cord, when that may not be it, and Dr. Bowman feels very strongly that's not what is going on here.
All that being said this is our action plan, for the next two weeks we are to change Cameron's diet, reduce fruits/veggies, load him up on carbs, cheese, bananas, limit fiber etc. So basically a diet of junk food! I am not at all excited about this prospect. I went out tonight and bought WONDER bread, I think it's been 15 years since I've been near that stuff. Obviously I'm not concerned about Cameron gaining too much weight, but I am not excited about letting him enjoy all the junk food there is...we are pretty lax when it comes to this sort of thing but he loves his fruit so it's going to be interesting. And if in 5 years from now you see my child eating "crap" don't shake your head at me, the Dr. made me do it.
The idea is hopefully this will change some of his bowel patterns/issues. If after 2 weeks we do not see a change we are to start giving him suppositories - OH JOY! Anyone with experience giving an almost 3 year old a suppository??
I am hoping we don't get to this point for obvious reasons. We will be checking in with urology regularly to update them on our "status". This treatment will go on for 3 months and we will repeat the CMG test in late July to compare results.
The hope is this last test was a fluke and next time it's back to stable. Although I am skeptical because he was a champ during the last test, no crying, had a bm that morning, overall it couldn't have gone better in terms of his participation outwardly.
So more waiting...I really never expected to be hit with another question, I mean could there be anymore? A potential diagnosis, a neurogenic bladder. I am just starting to research this. I am sure by our July appointment I'll have another 3 page list of questions. (Those Dr's love me!)
Then we began with Dr. Bowman, it was 4pm, Cameron was of course flying off the wall by this point. I implemented my new plan and had the Dr evaluate him first, which she did and Dad and Cameron then took off. The Dr. and I went through a long discussion and she thinks it's very unlikely their is an issue with the cord. Shunt issue also unlikely, but the muscle test Cameron had two weeks ago did come back showing decreased strength from his previous test so we are to share this report with our at home PTs and discuss further. If they are in agreement on the decrease then Bowman will consider a shunt revision-- possibly. I can tell you right now our PTs are not going to agree on the decrease in strength, but we shall see as there is somewhat of a question about how much the braces could be masking.
Dr. Bowman also copied one of my pages of questions and promised to find me a Dr who could answer or evaluate some of the questionable behaviors, development we are seeing in Cameron. (Thank you, thank you, thank you!!!)
I was going through Cameron's "looking up and away" patterns and as I was explaining I could see her wheels turning,I know she's thinking seizure. She asked me "has he had an EEG?" he has not, and it's not a seizure we both agreed after we discussed that I can get him to stop the behavior. Regardless it's puzzling.
Ultimately, this behavior, the clonus in his feet, the bladder, the delays, the recession the country is in, all can be summed up in "Cameron's brain is wired differently"
Good news brain and spine MRI are stable, no immediate surgical intervention needed. What the next 3 months hold it's hard to say, but 2009 is turning into quite the waiting game.
On a side note if anyone has any connections at Shriner's Hospital pleas email me.
Thanks!
We started at 1pm with the Kidney Ultrasound, I always chuckle to myself when they do this US and they scan his right side like that Kidney is just going to magically appear one day. Of course I really shouldn't snicker about it, but I think it helps to lighten the mood. Cameron enjoyed his ultrasound, he helped the technician move it around and even had "doggie" help out moving it around, it was all rather adorable, as far as Kidney Ultrasounds go.
Our schedule 2pm appointment started at sometime after 3pm, I lost track, which I think is best rather than stewing over the incessant waiting game.
Let me just preface this all by saying that I was truly expecting to walk into the urology appointment and hear that the CMG (icky bladder study) looked stable. Not just because I hoped for that, but because all of our other appointments seemed to be leading to that answer.
Silly Mommy, as Cameron might say. It appears as though we have a new QUESTION/CONCERN/ISSUE - whatever you want to call it... The CMG shows his pressures are a bit higher than September, and the perplexing issue is a strong bowel contraction that shows up on the test. According to Dr. Yerkes, this is not typical and peculiar. Normally she'd chalk it up as constipation, but for Cameron this is FAR from the case. I am going to spare everyone the details of this discussion but I have been charting his bowel/bladder patterns since January and it's not an issue for him.
So you could tell Dr. Yerkes was really confused by this result and wasn't sure what to do, she went out to consult with Dr. Bowman (nuerosurgeon), Yerkes said she doesn't want to put him through surgery for a potential retethering of the cord, when that may not be it, and Dr. Bowman feels very strongly that's not what is going on here.
All that being said this is our action plan, for the next two weeks we are to change Cameron's diet, reduce fruits/veggies, load him up on carbs, cheese, bananas, limit fiber etc. So basically a diet of junk food! I am not at all excited about this prospect. I went out tonight and bought WONDER bread, I think it's been 15 years since I've been near that stuff. Obviously I'm not concerned about Cameron gaining too much weight, but I am not excited about letting him enjoy all the junk food there is...we are pretty lax when it comes to this sort of thing but he loves his fruit so it's going to be interesting. And if in 5 years from now you see my child eating "crap" don't shake your head at me, the Dr. made me do it.
The idea is hopefully this will change some of his bowel patterns/issues. If after 2 weeks we do not see a change we are to start giving him suppositories - OH JOY! Anyone with experience giving an almost 3 year old a suppository??
I am hoping we don't get to this point for obvious reasons. We will be checking in with urology regularly to update them on our "status". This treatment will go on for 3 months and we will repeat the CMG test in late July to compare results.
The hope is this last test was a fluke and next time it's back to stable. Although I am skeptical because he was a champ during the last test, no crying, had a bm that morning, overall it couldn't have gone better in terms of his participation outwardly.
So more waiting...I really never expected to be hit with another question, I mean could there be anymore? A potential diagnosis, a neurogenic bladder. I am just starting to research this. I am sure by our July appointment I'll have another 3 page list of questions. (Those Dr's love me!)
Then we began with Dr. Bowman, it was 4pm, Cameron was of course flying off the wall by this point. I implemented my new plan and had the Dr evaluate him first, which she did and Dad and Cameron then took off. The Dr. and I went through a long discussion and she thinks it's very unlikely their is an issue with the cord. Shunt issue also unlikely, but the muscle test Cameron had two weeks ago did come back showing decreased strength from his previous test so we are to share this report with our at home PTs and discuss further. If they are in agreement on the decrease then Bowman will consider a shunt revision-- possibly. I can tell you right now our PTs are not going to agree on the decrease in strength, but we shall see as there is somewhat of a question about how much the braces could be masking.
Dr. Bowman also copied one of my pages of questions and promised to find me a Dr who could answer or evaluate some of the questionable behaviors, development we are seeing in Cameron. (Thank you, thank you, thank you!!!)
I was going through Cameron's "looking up and away" patterns and as I was explaining I could see her wheels turning,I know she's thinking seizure. She asked me "has he had an EEG?" he has not, and it's not a seizure we both agreed after we discussed that I can get him to stop the behavior. Regardless it's puzzling.
Ultimately, this behavior, the clonus in his feet, the bladder, the delays, the recession the country is in, all can be summed up in "Cameron's brain is wired differently"
Good news brain and spine MRI are stable, no immediate surgical intervention needed. What the next 3 months hold it's hard to say, but 2009 is turning into quite the waiting game.
On a side note if anyone has any connections at Shriner's Hospital pleas email me.
Thanks!
Sunday, March 29, 2009
Happy Birthday Connor !!!
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!
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!
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.
Sunday, February 15, 2009
Down, but not out.
Yes, changed the blog again - new year, new layout.
One of our regular readers said to me in December after Cameron got the cast "It's like you jinx yourself with a good post" - and here again it has happened. Maybe I should stop blogging? But I can't, if for no one else but myself!
So we are down, Mom in particular right now. Cameron would be too if he had any idea what was headed his way. We saw Dr. Bowman (Nuerosurgeon) last week to follow up on the recent MR of his ventricles. Good news, ventricles are stable. Bad news, there are other signs of a potential problem. It's a lot of information to get into, so I'm just leaving it at "signs". It's exhausting to try and explain it all, if I did explain it you'd probably just look at me funny or wish you'd never asked for the details.
So, what are we going to do about this POTENTIAL problem - MRI of brain and spine (with sedation), CMG (the very nasty and cruel bladder test), Muscle test and then see 4 different doctors to get everyone's opinion once all tests are complete. It's going to take a few weeks to fit it all of this in, and Clinic is overloaded right now with many doctors out in March so not until April 7th when we see Dr. Bowman and Dr. Yerkes will we have a final verdict.
Potential problems the tests will confirm or deny:
- shunt issue
- CSF in the spinal canal (this is known as Syringomelia) for those of you intimately familiar with our life this is what our crazy dog Miller suffers from, it's a nightmare and I pray, pray, pray this is not what we are dealing with, from about a year into Cameron's life this was one of my biggest fears.
- retethering of the spinal cord (highly unlikely)
- or nothing at all clinical, but tone and muscle related
Obviously we are all hoping for the last option. Putting Cameron through all of this is going to be very difficult, he is more aware of what is going on now. Even the short MR of his ventricles last week was tearful and scary. It's very hard to watch him in these situations. The waiting till April for answers is going to drive me nuts, but I have come to accept the reality of this waiting game and am grateful it's not an emergent situation.
After spending 3 hours at the nuerosurgeon's clinic last Thursday I was Down and OUT. But am happy to report I am back in the game, after all I have no choice, right?
There is so much going on right now as we prepare for the transition from Early Intervention to the school district and to add this to the mix - UGH!!!!!
Why is the transition so difficult? Cameron loses all of his therapies when he turns 3 and his "services" are handed over to the school district. This process is very complicated and filled with many fears and emotions. Trying to navigate it all and learn all of our rights to be sure we are advocating for Cameron is a huge undertaking. Information is not exactly "forthcoming" on all fronts.
In between all of this I am fighting with insurance companies and hosptials over bills and such.
Cameron is doing well despite all of this, as I said he really has no idea and I am grateful he is not in any pain. That is a huge blessing, one we do not overlook.
One of our regular readers said to me in December after Cameron got the cast "It's like you jinx yourself with a good post" - and here again it has happened. Maybe I should stop blogging? But I can't, if for no one else but myself!
So we are down, Mom in particular right now. Cameron would be too if he had any idea what was headed his way. We saw Dr. Bowman (Nuerosurgeon) last week to follow up on the recent MR of his ventricles. Good news, ventricles are stable. Bad news, there are other signs of a potential problem. It's a lot of information to get into, so I'm just leaving it at "signs". It's exhausting to try and explain it all, if I did explain it you'd probably just look at me funny or wish you'd never asked for the details.
So, what are we going to do about this POTENTIAL problem - MRI of brain and spine (with sedation), CMG (the very nasty and cruel bladder test), Muscle test and then see 4 different doctors to get everyone's opinion once all tests are complete. It's going to take a few weeks to fit it all of this in, and Clinic is overloaded right now with many doctors out in March so not until April 7th when we see Dr. Bowman and Dr. Yerkes will we have a final verdict.
Potential problems the tests will confirm or deny:
- shunt issue
- CSF in the spinal canal (this is known as Syringomelia) for those of you intimately familiar with our life this is what our crazy dog Miller suffers from, it's a nightmare and I pray, pray, pray this is not what we are dealing with, from about a year into Cameron's life this was one of my biggest fears.
- retethering of the spinal cord (highly unlikely)
- or nothing at all clinical, but tone and muscle related
Obviously we are all hoping for the last option. Putting Cameron through all of this is going to be very difficult, he is more aware of what is going on now. Even the short MR of his ventricles last week was tearful and scary. It's very hard to watch him in these situations. The waiting till April for answers is going to drive me nuts, but I have come to accept the reality of this waiting game and am grateful it's not an emergent situation.
After spending 3 hours at the nuerosurgeon's clinic last Thursday I was Down and OUT. But am happy to report I am back in the game, after all I have no choice, right?
There is so much going on right now as we prepare for the transition from Early Intervention to the school district and to add this to the mix - UGH!!!!!
Why is the transition so difficult? Cameron loses all of his therapies when he turns 3 and his "services" are handed over to the school district. This process is very complicated and filled with many fears and emotions. Trying to navigate it all and learn all of our rights to be sure we are advocating for Cameron is a huge undertaking. Information is not exactly "forthcoming" on all fronts.
In between all of this I am fighting with insurance companies and hosptials over bills and such.
Cameron is doing well despite all of this, as I said he really has no idea and I am grateful he is not in any pain. That is a huge blessing, one we do not overlook.
Wednesday, January 28, 2009
2009 is gonna be our year...
Matt recently said this while we were eating dinner, I chuckled. Although I do believe it's time for a "good year" and I believe we will have one. Not that last year was terrible, but it had a few rough patches, we'd like to go for a pothole free year!
So far we are off to a good start, Cameron is saying a lot of new words, it is so wonderful to hear! Some of his favorites (and ours)... M M = M&Ms, Ca Ca = Connor (input your own joke!) Mil Mil = Miller, "Ohh Maan", "Oh Drat" - from his favorite show Oswald. He also will whimper like "weenie" the dog on Oswald as if it's his own beloved dog making the noise.
Today he had me in tears when he did the "Penguin Polka" from Oswald. It was hilarious. This child loves "Oswald"!!!
He has many more words and many approximations for words, it's very encouraging. He knows his colors and some of his shapes, and a few numbers.
We added in another session of therapy to an already packed scheduled - we are now at 8 therapies in 5 days - INSANE! He tolerates them all well, so we will continue to get the most out of these last 4 months of EI.
With the therapy team we are trying a few other things, "listening therapy" where he is supposed to listen to this special CD 30 min 2xday - ummm yeah that's not really working out so well. You can see in this photo how much he enjoys this. I am trying to make this work but I don't think it's going to stick.
He is also supposed to wear his AFO and a knee immobilizer when he sleeps at night - seriously? By the time 7:30pm hits we don't want to fight about putting these things on him, so we're not. We are slowly working up to 10 min increments during the day of the knee immobilizer.
And finally he has a Binder that is to be worn around his trunk, this is to give him more stability and possibly improve breath support when speaking. This is the one I feel like I might actually be able to implement.
I feel as though I am not trying hard enough to make these things work, but then I am so tired I don't have the energy to go down the path of complete guilt.
His walking is improving, and then some days it's not, it's an ongoing question. He also has developed something called Clonus in his feet, he had this when he was very little and now it's back. Couple this with the changes in his gait, after many weeks of discussion with our two PTs they called his Neurosurgeon, and just to be cautious we are going in for an "MR" of his ventricles on Friday. This is a new procedure, it requires no sedation (YEAH!!) and no radiation (Double YEAH!)
We are expecting things to be status quo, it's just a precaution.
Cameron is starting to assert himself with his brother, saying things like "Move" and "All Done" to Connor. It's funny.
Connor just wants to be near him and play with him and doesn't seem the least bit offended by Cameron's actions.
Speaking of Connor he is a man on the move...crawling, pulling up, trying to climb.
He is also a piggy eater and such a cuddle bug, we love it. He came down with a bad bronchial infection a few weeks ago, they never tested him for RSV but the Dr said that's basically what he had. Wheezing, coughing etc so we got to use the nebulizer on him for two weeks, and visit the pediatrician every other day for a whole week to check in, fun times, but nothing compared to what we are used to. Cameron loved telling me when it was time for Connor's medicine and also enjoyed using it himself! As you can see...
All in all things are good, busy, but good.
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