Today was really a great day for the most part...
This morning we had to go to Zoe's school to see her receive her award. 44 children in the school (one from each class) received an award for the Character of Fairness - "Zoe has exemplified fairness by: always thinking about how her actions will affect others. She always tells the truth, takes turns, and plays by the rules". I was so very proud seeing my little girl becoming such a big kid. Standing up there as these kind words were read about her, in front of so many people. What a proud moment as parents it was!!!!
After that was done it was home for Zach and I, and off to work for Doug. I had calls that needed to be made. One of those calls was to our geneticist. We found that there are 2 test she can give Zachary to determine RSS...
One test has a 7-10% chance of finding RSS
The other has a 20% chance of finding RSS
These test will cost $900 ---- $900, 900 dollars --- for the possibility of not finding anything! If we find nothing, it DOES NOT rule out RSS! If we find something, that is all it is, something - a name for what is wrong with Zach. RSS is not fixable, it is treatable - but no matter what life will always be different for Zach.
So, we could pay $900 to find nothing, or maybe to find something. No matter what, the treatment is still the same - a feeding tube, and/or growth hormone injections.
Our geneticist and our pediatrician both say the same thing - if we need 100% proof (but the only way we get that, is the slim chance the tests say positive) go for it. If not, we are taking the right steps towards helping Zach, the same steps we would take knowing it is RSS without a doubt.
According to our pediatrician there is enough in her opinion to just go ahead and call it RSS. Our geneticist wants to observe him again before giving her opinion on the matter. Since he has not grown since our last appointment she feels RSS might be what it is but needs to see him again.
Doug and I are going in on Friday to discuss all of this with Debbie - she is from the genetics department. I want to weigh out all the pros and cons before we make a decision one way or another on the testing.
I also needed to make a call to the Pediatric Surgery Department. Zach's evaluation is all scheduled for Oct. 13th - Just 2 weeks away. They told me that his g-tube surgery will be anywhere from a week after to a month after that appointment, depending on the Drs schedule. Really right around the corner. I have so many questions, so much concern BUT overall I know this is the right thing, the right way to help Zach.
Decisions - I can't wait for a day where I have none to be made!
Wednesday, October 1, 2008
Monday, September 29, 2008
Weekend and Still Waiting....
Although this picture might not tell the whole story it was a fun day.......
Saturday morning we headed to the Zoo. It was a blast! Zach was into the animals, Zoe was into the animals, even Mommy and Daddy were into the animals! It was a long day, but such a wonderful family day - no crying (well, once on the carousel - but it wasn't his fault his SPD kicked in), or tantrums. Just a day full of giggles and smiles!
We are still waiting on hearing from the Dr. She did call this morning to have me call a new ENT so that we can get an appointment with him so that Zach can eventually get the appointment for his ABR to be done.( http://www.hearingcenter.com/services/abr.html ) They got us in rather fast and Zach will be seen Oct. 28th - then we get the ABR scheduled from there.
I hate all the red tape - Zach has an ENT, one we happen to adore but because he isn't at the children's clinic what he says needs to be double checked by an ENT there so that the ABR can be done.
She had not heard back from our GI and told me that if she does not hear from him by Wednesday she will call and see what is going on.
I hate waiting but that is the point we are still at. Waiting, it is such a cruel game!
Friday, September 26, 2008
DP
It finally came - the day we had been waiting for - the day we had our follow up with the DP.
We walked in - Doug, Zach, and I. I'd like to say we were all a bundle of nerves but I think Zach was just Zach (so easy going, didn't know what was happening) The first thing that was said to us is "You will not hear anything bad today, you will not hear anything you already didn't know"
As we sat we were handed a report. An 8 page report that we went over in great detail. Most was information we had given to the Dr 2 weeks ago. The rest was his findings.......
Neurodevelopmental diagnoses:
A. Developmental Language Disorder Expressive -- there is a clear dissociation between the Expressive Language and the Receptive Language, All developmental domains with the exception of EL are in a typical range for age. (His Expressive Language Assessment put him at 14 months)
B. Dyspraxia (http://www.dyspraxiafoundation.org.uk/services/dys_dyspraxia.php) Within the DLD-EL there is a clear dyspraxic picture present, independent of other diagnoses
C. Autistic Spectrum Disorder, ruled out. Zach is not manifesting signs/symptoms of Autism.
D. Hypotonia (a long paragraph with info I'm not even sure I understand)
E. Fragile Child Syndrome - basically we baby him too much and that a child who has issues still needs to be treated like an average child that is the same age. (but who wouldn't he looks and acts like a 1 year old)
While we were there, Zach's size also came into play - the DP is very worried about his size. We know Zach is small, we see it at every Dr we go to when they plot it on his chart, we see it everyday at home or around other children - BUT the way the DP put in on paper tells the whole story..........
Weight <2%; 50% for 12 months
Height 2%; 50% for 15 months
While we were there - he had a geneticist come in and look at Zach - he said "I think it could be Russell Silver Syndrome" http://www.magicfoundation.org/www/docs/112.111/russell_silver_syndrome
This is the same thing I asked our ped about months ago, the same thing she said was the only thing that really fit Zach. Right now we are waiting on hearing back from our geneticist so that he can be tested.
Overall I am happy with how the appointment went - we have 8 pages of good, solid information, diagnoses, and referrals. I received so much more wealth of information then I could have hoped for.
The DP normally sees kids back in 1 year but wants to see Zachary in 6 months. I hope when we see him then I can write about more good things.
We walked in - Doug, Zach, and I. I'd like to say we were all a bundle of nerves but I think Zach was just Zach (so easy going, didn't know what was happening) The first thing that was said to us is "You will not hear anything bad today, you will not hear anything you already didn't know"
As we sat we were handed a report. An 8 page report that we went over in great detail. Most was information we had given to the Dr 2 weeks ago. The rest was his findings.......
Neurodevelopmental diagnoses:
A. Developmental Language Disorder Expressive -- there is a clear dissociation between the Expressive Language and the Receptive Language, All developmental domains with the exception of EL are in a typical range for age. (His Expressive Language Assessment put him at 14 months)
B. Dyspraxia (http://www.dyspraxiafoundation.org.uk/services/dys_dyspraxia.php) Within the DLD-EL there is a clear dyspraxic picture present, independent of other diagnoses
C. Autistic Spectrum Disorder, ruled out. Zach is not manifesting signs/symptoms of Autism.
D. Hypotonia (a long paragraph with info I'm not even sure I understand)
E. Fragile Child Syndrome - basically we baby him too much and that a child who has issues still needs to be treated like an average child that is the same age. (but who wouldn't he looks and acts like a 1 year old)
While we were there, Zach's size also came into play - the DP is very worried about his size. We know Zach is small, we see it at every Dr we go to when they plot it on his chart, we see it everyday at home or around other children - BUT the way the DP put in on paper tells the whole story..........
Weight <2%; 50% for 12 months
Height 2%; 50% for 15 months
While we were there - he had a geneticist come in and look at Zach - he said "I think it could be Russell Silver Syndrome" http://www.magicfoundation.org/www/docs/112.111/russell_silver_syndrome
This is the same thing I asked our ped about months ago, the same thing she said was the only thing that really fit Zach. Right now we are waiting on hearing back from our geneticist so that he can be tested.
Overall I am happy with how the appointment went - we have 8 pages of good, solid information, diagnoses, and referrals. I received so much more wealth of information then I could have hoped for.
The DP normally sees kids back in 1 year but wants to see Zachary in 6 months. I hope when we see him then I can write about more good things.
Wednesday, September 24, 2008
Update...Good News, Iffy News, Bad News
I'll start with the good...
The main test for MD came back negative!
The iffy news...some of the other tests came back questionable. Zach's Dr called me in to the office to let me know, yet I'm still unsure as to what it all really means. For now she was calling his neurologist and giving him the results - we are to see him in November and she wasn't concerned with Zach getting in sooner. She told me that the Dr will re-order the same test and this one would be used as a baseline, and that he will also run an EMG. As far as it sounds MD for the time is ruled out but still not 100% out of the possibility.
The bad...at OT today Ms. Jerry started his re-evaluation - it didn't go so well. As Zach is beginning to regulate himself with his SPD we are noticing more and more where he is lacking in other areas. She will give me a full report when we finish the testing. For right now some of it is showing Zach at more of a 15 month old level - far behind where we want him to be.
Tomorrow is the day I've been waiting for yet at the same time dreading going to. Tomorrow is the day we follow up with the DP. It is amazing at how fast the time has passed...2 weeks came and went in the blink of an eye.
Let's all hope for some good news tomorrow!
The main test for MD came back negative!
The iffy news...some of the other tests came back questionable. Zach's Dr called me in to the office to let me know, yet I'm still unsure as to what it all really means. For now she was calling his neurologist and giving him the results - we are to see him in November and she wasn't concerned with Zach getting in sooner. She told me that the Dr will re-order the same test and this one would be used as a baseline, and that he will also run an EMG. As far as it sounds MD for the time is ruled out but still not 100% out of the possibility.
The bad...at OT today Ms. Jerry started his re-evaluation - it didn't go so well. As Zach is beginning to regulate himself with his SPD we are noticing more and more where he is lacking in other areas. She will give me a full report when we finish the testing. For right now some of it is showing Zach at more of a 15 month old level - far behind where we want him to be.
Tomorrow is the day I've been waiting for yet at the same time dreading going to. Tomorrow is the day we follow up with the DP. It is amazing at how fast the time has passed...2 weeks came and went in the blink of an eye.
Let's all hope for some good news tomorrow!
Tuesday, September 23, 2008
Nothing New...Nothing We Already Didn't Know
Today has been a good day for Zachary.
Tuesday's are always our long therapy day.
Zach started his day with OT - he did his listening therapy without a fight. Ms Jerry wanted to do finger painting with him, so we thought we would give it a try. My little boy surprised Ms. Jerry and I as he reached for the paint with not just one finger unsteadily reaching for the bowl BUT his whole hand. Zach dipped his whole, opened hand right in! I know the look on my face was priceless as it is a normally a fight to get his whole hand dirty. This wasn't without consequences - he had to stop frequently and look at his hand, squishing up his nose in disgust - but he got threw it all on his own - no tears!
Onto PT - more surprises there........Zach didn't give Ms. Patty any static! He went in and got right to work. Jumping on the trampoline like an old pro, trying to walk the steps without fighting, kicking and throwing the balls.
Then of course there was ST.... Zachary did a good job. He showed Ms. Kristin how he isn't swallowing, so they had a tea party - I think Zach thought it was funny. He is attempting to say two word phrases - not that the words are coming out right but he is trying, today he was trying so very hard to say "bye cow" which sounded more like "bi do" - this is such a long shot from where he was!
Ms. Kristin also went over the preliminary score of the Praxis test that she gave Zach last week. Nothing new........just a solid confirmation of what we already knew to be true - Zach is apraxic and according to the test it is sever. This is information we knew and we will deal with - a little hard seeing it on paper that way but nothing we can't handle!
Tuesday's are always our long therapy day.
Zach started his day with OT - he did his listening therapy without a fight. Ms Jerry wanted to do finger painting with him, so we thought we would give it a try. My little boy surprised Ms. Jerry and I as he reached for the paint with not just one finger unsteadily reaching for the bowl BUT his whole hand. Zach dipped his whole, opened hand right in! I know the look on my face was priceless as it is a normally a fight to get his whole hand dirty. This wasn't without consequences - he had to stop frequently and look at his hand, squishing up his nose in disgust - but he got threw it all on his own - no tears!
Onto PT - more surprises there........Zach didn't give Ms. Patty any static! He went in and got right to work. Jumping on the trampoline like an old pro, trying to walk the steps without fighting, kicking and throwing the balls.
Then of course there was ST.... Zachary did a good job. He showed Ms. Kristin how he isn't swallowing, so they had a tea party - I think Zach thought it was funny. He is attempting to say two word phrases - not that the words are coming out right but he is trying, today he was trying so very hard to say "bye cow" which sounded more like "bi do" - this is such a long shot from where he was!
Ms. Kristin also went over the preliminary score of the Praxis test that she gave Zach last week. Nothing new........just a solid confirmation of what we already knew to be true - Zach is apraxic and according to the test it is sever. This is information we knew and we will deal with - a little hard seeing it on paper that way but nothing we can't handle!
Sunday, September 21, 2008
Sunday.....Already?!?!
It never ceases to amaze me at how fast the weekends fly by! This one was no exception....
It wasn't the best of our weekends, but it was a nice weekend.
Since it is the end that means the beginning of a new week is coming, that means......
I will be waiting on pins and needles to hear from the Dr. I'm hoping for good news --- a test that says "NO MD"
Not only are we waiting for that test to come back but we will also be hearing from Zach's SLP how his test went that he took last week.
It also means our 2 week wait is coming to an end, we will be headed to the DP on Thursday for his answers on what is wrong with Zachary.
It also means another crazy week filled with therapy.
Added to the excitement of the week is Zoe's 2 days of dance. We are still not in a grove from having a nice break over the summer.
Also curriculum chat for Zoe's kindergarten class.
So our week looks a little like this...
Monday - waiting for news, curriculum chat
Tuesday - OT, PT, ST, dance, more waiting
Wednesday - OT, ST, more waiting
Thursday - ST, DP appointment, dance, more waiting
Friday - nothing (for now) YIPPEE, hopefully the waiting will be done by this time ;-)
It will be great if this week is filled with GOOD news!
It wasn't the best of our weekends, but it was a nice weekend.
Since it is the end that means the beginning of a new week is coming, that means......
I will be waiting on pins and needles to hear from the Dr. I'm hoping for good news --- a test that says "NO MD"
Not only are we waiting for that test to come back but we will also be hearing from Zach's SLP how his test went that he took last week.
It also means our 2 week wait is coming to an end, we will be headed to the DP on Thursday for his answers on what is wrong with Zachary.
It also means another crazy week filled with therapy.
Added to the excitement of the week is Zoe's 2 days of dance. We are still not in a grove from having a nice break over the summer.
Also curriculum chat for Zoe's kindergarten class.
So our week looks a little like this...
Monday - waiting for news, curriculum chat
Tuesday - OT, PT, ST, dance, more waiting
Wednesday - OT, ST, more waiting
Thursday - ST, DP appointment, dance, more waiting
Friday - nothing (for now) YIPPEE, hopefully the waiting will be done by this time ;-)
It will be great if this week is filled with GOOD news!
Saturday, September 20, 2008
What A Day!
Today ended up being a washout!
A day that was going to be all outdoors fun ended up being an indoors fun day.
We woke up to rain - what a way to put a damper on what was going to be a celebration.
We've decided to wait until another day to go to the zoo, instead we will play inside, watch movies, and chill out at home.
Washouts aren't all that bad - they make for a nice cozy family day!
A day that was going to be all outdoors fun ended up being an indoors fun day.
We woke up to rain - what a way to put a damper on what was going to be a celebration.
We've decided to wait until another day to go to the zoo, instead we will play inside, watch movies, and chill out at home.
Washouts aren't all that bad - they make for a nice cozy family day!
Subscribe to:
Posts (Atom)
