In the meantime here is a picture I took the other night of Ella after she had fell asleep. I love watching her sleep. She looks so peaceful and not struggling at all to be understood. 
Tuesday, April 1, 2014
April is Autism awareness month...
Tuesday, January 14, 2014
EI & OT
When Ella was a baby we started with an fantastic OT for feeding issues. That changed to other issues as she got bigger. Eventually she graduated because for an almost 3 year old she had met all of her goals that EI (early intervention) had given her as far as OT and PT were concerned.
Fast forward 2.5 years and here we are again. Before Christmas Ella was officially evaluated for OT services again. Partly bc of her extremely low muscle tone and the fact that her pediatrician suspected that she had SPD (sensory processing disorder). Some symptoms of SPD include falling down a lot, low muscle tone, and not feeling pain. Ella has all 3 of those symptoms.
Today we got the results of her testing. While I suspected she was behind I was not expecting to be told that she has basically regressed to a point she was at before she achieved all her goals during EI. Ella tested at the level of a 34 month old. She will basically start getting OT weekly until she meets her goals again. They will be reassessing her again in 4 months to see where she is and if her goals need changed at that point.
Like her old OT pointed out to me it could be that she regressed at some point in the last couple of years or she could have simply not progressed once she met her goals in EI.
Here's to hoping therapy helps turn things around for her quickly!
If you would like to learn more about SPD here is a link for you to explore.
http://www.spdfoundation.net/about-sensory-processing-disorder.html
Friday, January 3, 2014
Talk about confusing....
I knew last night that I would not get a lot of sleep due the anticipation of what would or wouldn't happen to Ella today. It was no surprise considering I have been battling insomnia like no one's business for the last month. The dreaded C-word will do that to a person. This is kind of complicated and confusing but I will do my best to break it down for you as quickly as possible.
First of all this bone disorder is complicated at times by itself. The actual name of the bone disorder is multiple osteochondroma (osteo-con-dro-mus)----thats not a real pronunciation...I created it to help you pronounce it if you want to know how. With a normal child when they grow their bones grow in length usually. With ella or someone with this bone disorder the bones grow in length but they also grow out (hence the tumors) which is what causes a person with this bone disorder to have a shorter stature. We were also told some interesting news with this disorder. With her dad his mom found his first tumor when he was 2 and he had his first surgery when he was 5. With a normal child with this disorder the first tumor is discovered between the age of 4-6 and the first surgery is between age 10-12. Her dad was an extreme case. He has more tumors than he can probably count. With this disorder you can have just a few tumors or you can have dozens like her dad. There is no way to know which end of the spectrum she will fall on. Only time will tell. Now since we have that out of the way, on to how her appointment went today....
When we saw Dr. Tony today he scanned her spine and both arms to check for more osteochondromas (aka benign tumors). He found a few more. She has a total of 9 between her right arm and both legs around her knees and on her knees, but not counting the suspicious spot on her left wrist. None of them appear to be big enough to need removing right now. We will know when to remove them when they start to cut into her tendons and muscles and possibly nerves and blood vessels. His plan is to monitor her every 6 months and go from there. There is a ped. ortho dr in Michigan that he knows and he is going to ask him what his suggestions are as far as how often to X-ray her and check up on her. For now though we are going with every 6 months. This will eliminate the problem of knowing when to remove them especially given the fact that she does not feel pain.
As far as the white spot on her left wrist goes we do not have a lot of answers....He did say this he is 99% sure it was not from an old injury and here is why. First of all there are 2 bones that run from your wrist to your elbow...if you hold your left arm out as if you were looking at your wedding rings the bone on the outside is the bone that can be broken by itself bc it is the stronger bigger bone and takes the brunt of injuries to that section of the arm. The bone on the inside is not as strong. He said it is extremely rare (he has never seen it in his practice) where the bone on the inside is broke without the bone on the outside being broken too. Also the X-ray done by her pediatrician in November, the X-ray done by Shriners last month and the X-ray done today in his office all show the spot being exactly the same. If it was an injury that spot would have gone down as the bone healed. That has no happened.
Now there are 2 possibilities as to what this spot is....because it does look markedly different from the tumors she has he is not sure if it is another spot that she has or if it is bone cancer. Now, I know that sounds scary but let me explain. When ppl think of bone cancer they think of someone who has some form of cancer...lets say breast cancer, and it spreads to the bones making the person's life most certainly fatal. With a child who has bone cancer it is much different. It is rarely ever fatal. They could go in and biopsy it and see what it is and she would be in a cast for several weeks or we can take the less invasive path (which is what we are doing...). We are going to monitor it. As she gets bigger it should go down if it is cancer. Much like the size of a scar you got at 2 looks much smaller now then it did when you were 2. If it gets bigger it would be indicative of it being another tumor and will be monitored just like every other tumor she has already.
Speaking of the tumors....we are not removing them right now because with this bone disorder if they remove them now they will just grow back so why put her through surgery until it is absolutely necessary?
At any rate that is the extent of the update for today. For today we wait. Until such time we feel we need to not wait. Now lets hope I get a lot more sleep tonight!!
First of all this bone disorder is complicated at times by itself. The actual name of the bone disorder is multiple osteochondroma (osteo-con-dro-mus)----thats not a real pronunciation...I created it to help you pronounce it if you want to know how. With a normal child when they grow their bones grow in length usually. With ella or someone with this bone disorder the bones grow in length but they also grow out (hence the tumors) which is what causes a person with this bone disorder to have a shorter stature. We were also told some interesting news with this disorder. With her dad his mom found his first tumor when he was 2 and he had his first surgery when he was 5. With a normal child with this disorder the first tumor is discovered between the age of 4-6 and the first surgery is between age 10-12. Her dad was an extreme case. He has more tumors than he can probably count. With this disorder you can have just a few tumors or you can have dozens like her dad. There is no way to know which end of the spectrum she will fall on. Only time will tell. Now since we have that out of the way, on to how her appointment went today....
When we saw Dr. Tony today he scanned her spine and both arms to check for more osteochondromas (aka benign tumors). He found a few more. She has a total of 9 between her right arm and both legs around her knees and on her knees, but not counting the suspicious spot on her left wrist. None of them appear to be big enough to need removing right now. We will know when to remove them when they start to cut into her tendons and muscles and possibly nerves and blood vessels. His plan is to monitor her every 6 months and go from there. There is a ped. ortho dr in Michigan that he knows and he is going to ask him what his suggestions are as far as how often to X-ray her and check up on her. For now though we are going with every 6 months. This will eliminate the problem of knowing when to remove them especially given the fact that she does not feel pain.
As far as the white spot on her left wrist goes we do not have a lot of answers....He did say this he is 99% sure it was not from an old injury and here is why. First of all there are 2 bones that run from your wrist to your elbow...if you hold your left arm out as if you were looking at your wedding rings the bone on the outside is the bone that can be broken by itself bc it is the stronger bigger bone and takes the brunt of injuries to that section of the arm. The bone on the inside is not as strong. He said it is extremely rare (he has never seen it in his practice) where the bone on the inside is broke without the bone on the outside being broken too. Also the X-ray done by her pediatrician in November, the X-ray done by Shriners last month and the X-ray done today in his office all show the spot being exactly the same. If it was an injury that spot would have gone down as the bone healed. That has no happened.
Now there are 2 possibilities as to what this spot is....because it does look markedly different from the tumors she has he is not sure if it is another spot that she has or if it is bone cancer. Now, I know that sounds scary but let me explain. When ppl think of bone cancer they think of someone who has some form of cancer...lets say breast cancer, and it spreads to the bones making the person's life most certainly fatal. With a child who has bone cancer it is much different. It is rarely ever fatal. They could go in and biopsy it and see what it is and she would be in a cast for several weeks or we can take the less invasive path (which is what we are doing...). We are going to monitor it. As she gets bigger it should go down if it is cancer. Much like the size of a scar you got at 2 looks much smaller now then it did when you were 2. If it gets bigger it would be indicative of it being another tumor and will be monitored just like every other tumor she has already.
Speaking of the tumors....we are not removing them right now because with this bone disorder if they remove them now they will just grow back so why put her through surgery until it is absolutely necessary?
At any rate that is the extent of the update for today. For today we wait. Until such time we feel we need to not wait. Now lets hope I get a lot more sleep tonight!!
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