Just Keep Coming!
As promised I have a small update from the phone calls that were made today.
First call: Kristin, Zach's dietitian. She was able to speak with Zach's GI about his case. Dr E wants to see Zach back sooner rather then later but wants his allergist to run the allergy testing first. After that is done he wants to see Zach and discuss more biopsies.
Second call: The Allergist. Zach's appointment for testing was April 13th - as soon as I said the testing depending on the GI doing more of his own testing Zach's appointment quickly got moved to this coming Tuesday January 12th. The only down side is that this will be a skin prick test....the only positives that have come from that test are Milk and Soy. If the test does not show more positives we will go back the next week for another patch test. This is BAD BAD BAD for Zachary...the last patch test brought a lot of shut downs and no movement for 72 hours.
Third call: The Insurance Company. I need to find out if a doctor from out of state is on our plan. His website claims he is. When I called the first time they couldn't find him....
Fourth call: Medical Neurogenetics (this is the out of state doctor I referred to) - Dr Shoffner's office to find out his tax id.
Fifth call: Insurance Company -- good thing I called because with our luck he is NOT on our plan (does except the same insurance company just not our plan). However, I found out that our pediatrician can call and ask for a "Gap Exception" this will allow us to still see the doctor we need to see and only pay our in network payments. PLEASE if anyone is listening let this happen as I have no clue how we will pay without this miracle.
Sixth call: The Pediatrician. Of course this call was to make sure she will call and ask for the "Gap Exception" too bad she wasn't in her office so I'm waiting on a call back from her this afternoon. I have no doubt in my mind she will be doing this for us as she believes this is the next step to take in finding answers.
FYI Dr Shoffner was referred to me by a woman named Emmy (I posted about her a while back) She really motivated me to take this to another level. Here is one of the links she passed onto me http://www.umdf.org/site/c.dnJEKLNqFoG/b.3042177/k.D869/fontfont.htm
This is not to say this is what Zach has as we do not know. His geneticist has mentioned testing for it in the past but didn't because it was right after his g-tube was placed and wanted to give him a break. During my conversation with Emmy she made me think really hard about this and the right steps to take - Zach would be able to get tested here but Dr Shoffner is the best option - especially hearing Ana's story of being tested 2x once negative results and then again with a fresh biopsy (Dr. Shoffner is one of only 2 in the country that can do this) and that biopsy coming back positive. Ana was 4 when she finally got a diagnosis - Emmy knows exactly what I am going threw not knowing. After speaking with Emmy that day and seeing the possible symptom list and noting that he has more then 3 systems involved (he actually as 5 involved). I think it is high time they test and either confirm or rule out a mito disorder. I'm just hoping we will find away this all works out...if our insurance won't grant us the "Gap Exception" this will be a very long hard journey on us as far as having the money for all of the appointments.
I'm off to start the paperwork that needs to be done in order to do what we have to do for answers. Momma Bear is ready for this!
Thursday, January 7, 2010
So Happy the Appointments....
are done for the week.
I've never been so happy that a week is coming to a close. I think there were just too many reminders of things going on this week and it made it all very hard to take in.
Yesterday Zach had a pretty good OT session. Ms. Jerry and I were able to go over some more strategies for Zach and to really talk over his 6 month review on his care plan.
I think what upset me about his care plan isn't that he still has one but that it is just a reminder of his issues. Sometimes it is rather hard to see where we came from and the improvements that HAVE happened.
The first section of his care plan is Current Level of Function -- that is where it all starts, that is for me the hardest part to read. It is a constant reminder of him not being where he needs to be. I am going to be brave and for the first time type up word for word what this one says...
This is a 6 month update since Zach's re-assessment in June. He continues to exhibit mild fine motor delays and sever motor planning difficulties (dyspraxia). In addition, he is having moderate to sever social-emotional issues and sensory issues at home and at school. He suffers from sensory overloads many days after school. During school he refuses to interact with the other children or engage in interactive play. He is very sensitive to the other children/adults remarking about him being "different". His self esteem and self confidence is suffering. His teachers have followed threw with only part of the recommendations made for helping meet his sensory needs. Zachary continues to need sensory strategies to help him stay at the just right level of alertness for learning and to help him deal with sensory overload. He continues to need a familiar "pal" of a familiar adult to be his buddy in new situations at school and help learning new motor activities. His family is also exploring visual aids (aac) to help him with communication when he is experiencing sensory or social "shut down".
Okay while I'm at it (and this feels good to let it all out) I'll move on to his Progress to Date -- this has its ups and downs for me a good aid for what he can do but again still points to a lot of what he can't do yet......
Zachary met goal#1 and is now crossing the midline of his body spontaneously with minimal displacement during gross and fine motor activities. He partially met goal#2 and can use scissors correctly to cut along an 8 inch line within one half inch accuracy, but needs min. asst. to hold the paper. He met goal#3 of increasing participation in swinging activities on the playground and does this at 90% accuracy. He did not meet goal #4. He colors a three inch shape, but is not staying within 1/4 of the boundary. He can stay within 2" of the boundary. He is not yet stabilizing his arm on the table surface for drawing activities which reduces his accuracy. This goal will be retained. He also did not meet his goal for using age appropriate writing/drawing precision 50% of the time. He continues to use a fisted grip, but will retain a fingertip grip for a short while after help to place his hand on correctly. Zach has made significant progress in visual tracking. Shortly after his last re-assessment, he went for an eye exam. He received glasses for an astigmatism. His excessive eye blinking, eye rubbing has decreased significantly. He will occasionally exhibit it when he has had unfamiliar visual stimulation during the day (new places, people, ect). He is tracking in vertical and horizontal patterns. Goal will be retained to increase accuracy especially in circular tracking. He met goal #7, responding when his name is called 90% of the time during therapy sessions. He partially met goal #8. He will complete play activities alone or with a family member or clinician. However, he will not play with peers yet. He will parallel play with familiar peers. He partially met goal #9 and can follow a 2 step direction with 75% accuracy. However, he cannot repeat the direction, possibly due to language difficulties. He partially met goal #10, and is tolerating some bumps and touches at school. However, he is extremely guarded about other children being in his space, and interprets many minor touches as "owies". He does tolerate riding the bus to and from school.
Next comes Rehabilitation Potential --- his is good (and that is a large plus in my book) most time she doesn't comment here and this time she did saying.....
Zachary continues to need skilled occupational therapy to assist him in participating in age appropriate occupations at home, school, and in the community secondary to motor dyspraxia and to a sever sensory processing disorder.
If you've made it this far reading I thank you from the bottom of my heart!
Time to make some calls to the doctors....I'll update with that later.
I've never been so happy that a week is coming to a close. I think there were just too many reminders of things going on this week and it made it all very hard to take in.
Yesterday Zach had a pretty good OT session. Ms. Jerry and I were able to go over some more strategies for Zach and to really talk over his 6 month review on his care plan.
I think what upset me about his care plan isn't that he still has one but that it is just a reminder of his issues. Sometimes it is rather hard to see where we came from and the improvements that HAVE happened.
The first section of his care plan is Current Level of Function -- that is where it all starts, that is for me the hardest part to read. It is a constant reminder of him not being where he needs to be. I am going to be brave and for the first time type up word for word what this one says...
This is a 6 month update since Zach's re-assessment in June. He continues to exhibit mild fine motor delays and sever motor planning difficulties (dyspraxia). In addition, he is having moderate to sever social-emotional issues and sensory issues at home and at school. He suffers from sensory overloads many days after school. During school he refuses to interact with the other children or engage in interactive play. He is very sensitive to the other children/adults remarking about him being "different". His self esteem and self confidence is suffering. His teachers have followed threw with only part of the recommendations made for helping meet his sensory needs. Zachary continues to need sensory strategies to help him stay at the just right level of alertness for learning and to help him deal with sensory overload. He continues to need a familiar "pal" of a familiar adult to be his buddy in new situations at school and help learning new motor activities. His family is also exploring visual aids (aac) to help him with communication when he is experiencing sensory or social "shut down".
Okay while I'm at it (and this feels good to let it all out) I'll move on to his Progress to Date -- this has its ups and downs for me a good aid for what he can do but again still points to a lot of what he can't do yet......
Zachary met goal#1 and is now crossing the midline of his body spontaneously with minimal displacement during gross and fine motor activities. He partially met goal#2 and can use scissors correctly to cut along an 8 inch line within one half inch accuracy, but needs min. asst. to hold the paper. He met goal#3 of increasing participation in swinging activities on the playground and does this at 90% accuracy. He did not meet goal #4. He colors a three inch shape, but is not staying within 1/4 of the boundary. He can stay within 2" of the boundary. He is not yet stabilizing his arm on the table surface for drawing activities which reduces his accuracy. This goal will be retained. He also did not meet his goal for using age appropriate writing/drawing precision 50% of the time. He continues to use a fisted grip, but will retain a fingertip grip for a short while after help to place his hand on correctly. Zach has made significant progress in visual tracking. Shortly after his last re-assessment, he went for an eye exam. He received glasses for an astigmatism. His excessive eye blinking, eye rubbing has decreased significantly. He will occasionally exhibit it when he has had unfamiliar visual stimulation during the day (new places, people, ect). He is tracking in vertical and horizontal patterns. Goal will be retained to increase accuracy especially in circular tracking. He met goal #7, responding when his name is called 90% of the time during therapy sessions. He partially met goal #8. He will complete play activities alone or with a family member or clinician. However, he will not play with peers yet. He will parallel play with familiar peers. He partially met goal #9 and can follow a 2 step direction with 75% accuracy. However, he cannot repeat the direction, possibly due to language difficulties. He partially met goal #10, and is tolerating some bumps and touches at school. However, he is extremely guarded about other children being in his space, and interprets many minor touches as "owies". He does tolerate riding the bus to and from school.
Next comes Rehabilitation Potential --- his is good (and that is a large plus in my book) most time she doesn't comment here and this time she did saying.....
Zachary continues to need skilled occupational therapy to assist him in participating in age appropriate occupations at home, school, and in the community secondary to motor dyspraxia and to a sever sensory processing disorder.
If you've made it this far reading I thank you from the bottom of my heart!
Time to make some calls to the doctors....I'll update with that later.
Wednesday, January 6, 2010
Caringbridge
I made another website because of a friend of mine really pushing me to do so. She was worried about all the new things going on with Zach and thought that some people over there will read it and may have similar issues going on so I don't feel all alone.
Please feel free to take a look http://www.caringbridge.org/visit/zacharyszilagyi
I know right now I'll be doing a lot of cross posting over there.
Please feel free to take a look http://www.caringbridge.org/visit/zacharyszilagyi
I know right now I'll be doing a lot of cross posting over there.
Appointments Galore an Update
So this week really started off with a huge BANG getting back into a routine is very hard around here, especially for Zach.
Monday started with getting ready for school....we sure weren't ready for that cold weather we've been getting (yuck). As if that weren't enough I still had to change Zach's day around by picking him up at school for his first appointment of the new year.
First stop, to see Ms. Kristin, Zach's dietitian. I was really worried about how he was growing because he hasn't been getting all his feeds in. WELL....he surprised me and was doing well. He gained a bit of weight 2 whole pounds YAHOO but his height stayed steady - this is okay for now. Kristin was a bit taken back by Zach's new issues as we were in her office and seemed to grow quite concerned with it. As he wasn't talking and when he did decide to share his voice it was his hands talking in different voices. We spent a good hour talking about what was happening. Kristin reassured me we were doing the right thing getting a psychological evaluation done, and told me what a great person the doctor is that we will be seeing. I also found out that they have weekly meetings (the GI department and the psychology department) Kristin will be informed of his progress and what we need to do as a feeding team. Kristin certainly put my mind at ease about all this new stuff going on, she is really a wonderful person!
Next step was home to get Zoe and onto speech......OH BOY was that a total disaster! Since his SLP is still kind of new to us and Zach is still new to her - let's just say it wasn't his best session ever. With Zach's SPD being so bad....his SLP just wasn't getting it. As much as I was saying "we better stop he is going into an overload" she kept letting him go. I was so very frustrated. He hardly did any ST because he was too busy with the sand and then the play-doh -- it all sent him for the biggest loop I have seen in a long time!
When that was all said and done I had to stop at the grocery store. What a mistake that was! Zachary screamed the entire time we were in the store. I've never endured so many awful looks and comments in my life. No matter what I was doing to try and calm him it wasn't working. By the time we got home he was nonverbal and finally at one point asked "I doh do bed now?" Poor little man was totally ready to shut down (it was only 6pm).
Tuesday morning was yet a different routine all over, which once again sent Zach into a tail spin...
We had to wake up early and get to the dentist before school. All went pretty well at the dentist. Zach went into complete shut down mode -- no talking (not even to me) and no moving. As he was laying in the chair getting his teeth cleaned he looked like this little mannequin. Sometimes I simply don't know what to think - sometimes I'm happy he gets that way and other times it just hurts so bad to watch him be that way. His hygienist (he only sees her - Amy) is an amazing person she is so kind to him and you can tell he remembers her each time we go. However, I hate hearing "he is doing so well! you should see the majority of the 3 year olds who come in here" I know he is doing better then a screaming child -- but he is doing that well because he has completely left his own body --- I'm starting to wonder if that is really doing well or if it is really doing worse.
Zach was excited to get to school and somewhat back into what he knows as his normal routine.
When he got home it was off to therapy. He had ST first and did slightly better then the day before. BUT not by too much. He did a lot of saying "I no no" when he didn't want to answer. He did a lot of NO eye contact and a lot of only doing what he wanted to do. I wish Ms. Andrea would be a little harder on him and not let him rule the session.
After that it was OT time and boy was he happy to be back with Ms. Jerry! As soon as he saw her it was BIG hugs for her. She had written up his 6 month report...which made me a little sad. I don't have a copy yet because we decided to add some more to it. When I do I'll post more on what has me upset. Funny you take all these steps forward but somehow we always manage to take just as many or more backwards - HUMPH!
Today is the first day of getting back on Zach's normal routine....I hope it is going well at school ;-)
Monday started with getting ready for school....we sure weren't ready for that cold weather we've been getting (yuck). As if that weren't enough I still had to change Zach's day around by picking him up at school for his first appointment of the new year.
First stop, to see Ms. Kristin, Zach's dietitian. I was really worried about how he was growing because he hasn't been getting all his feeds in. WELL....he surprised me and was doing well. He gained a bit of weight 2 whole pounds YAHOO but his height stayed steady - this is okay for now. Kristin was a bit taken back by Zach's new issues as we were in her office and seemed to grow quite concerned with it. As he wasn't talking and when he did decide to share his voice it was his hands talking in different voices. We spent a good hour talking about what was happening. Kristin reassured me we were doing the right thing getting a psychological evaluation done, and told me what a great person the doctor is that we will be seeing. I also found out that they have weekly meetings (the GI department and the psychology department) Kristin will be informed of his progress and what we need to do as a feeding team. Kristin certainly put my mind at ease about all this new stuff going on, she is really a wonderful person!
Next step was home to get Zoe and onto speech......OH BOY was that a total disaster! Since his SLP is still kind of new to us and Zach is still new to her - let's just say it wasn't his best session ever. With Zach's SPD being so bad....his SLP just wasn't getting it. As much as I was saying "we better stop he is going into an overload" she kept letting him go. I was so very frustrated. He hardly did any ST because he was too busy with the sand and then the play-doh -- it all sent him for the biggest loop I have seen in a long time!
When that was all said and done I had to stop at the grocery store. What a mistake that was! Zachary screamed the entire time we were in the store. I've never endured so many awful looks and comments in my life. No matter what I was doing to try and calm him it wasn't working. By the time we got home he was nonverbal and finally at one point asked "I doh do bed now?" Poor little man was totally ready to shut down (it was only 6pm).
Tuesday morning was yet a different routine all over, which once again sent Zach into a tail spin...
We had to wake up early and get to the dentist before school. All went pretty well at the dentist. Zach went into complete shut down mode -- no talking (not even to me) and no moving. As he was laying in the chair getting his teeth cleaned he looked like this little mannequin. Sometimes I simply don't know what to think - sometimes I'm happy he gets that way and other times it just hurts so bad to watch him be that way. His hygienist (he only sees her - Amy) is an amazing person she is so kind to him and you can tell he remembers her each time we go. However, I hate hearing "he is doing so well! you should see the majority of the 3 year olds who come in here" I know he is doing better then a screaming child -- but he is doing that well because he has completely left his own body --- I'm starting to wonder if that is really doing well or if it is really doing worse.
Zach was excited to get to school and somewhat back into what he knows as his normal routine.
When he got home it was off to therapy. He had ST first and did slightly better then the day before. BUT not by too much. He did a lot of saying "I no no" when he didn't want to answer. He did a lot of NO eye contact and a lot of only doing what he wanted to do. I wish Ms. Andrea would be a little harder on him and not let him rule the session.
After that it was OT time and boy was he happy to be back with Ms. Jerry! As soon as he saw her it was BIG hugs for her. She had written up his 6 month report...which made me a little sad. I don't have a copy yet because we decided to add some more to it. When I do I'll post more on what has me upset. Funny you take all these steps forward but somehow we always manage to take just as many or more backwards - HUMPH!
Today is the first day of getting back on Zach's normal routine....I hope it is going well at school ;-)
Monday, January 4, 2010
The Start of the Appointments
Today is really the start of the new year for us.
Kids are back to school, husband is back to work, the house is quiet as Otis and I get some rest to gather our sanity at least for a couple hours today.
Today is Zach's first appointment of the new year (his dietitian). To be honest I'm really not looking forward to taking him in. Since school started his feeding schedule has varied so much that most times he wasn't getting all he needed in. The fits were many, he was sick, the refusal to feed on his pump was there, the tears were there, the screams were there....it has just been rough! Over break I was able to try to change things around for him in hopes of making it easier now that he is in school -- a schedule that he will be able to keep in or out of school, something that I hope will work for all of us. He is such a stickler with his schedule and how things work. I have to admit I'm a bit worried to see where his weight is, my fingers are crossed he has at least maintained.
Zach also gets back on his therapy schedule again today.........2 weeks off really sends the little man for a loop. I was talking with him this morning and said we get to go see Miss Andrea today and his smile lit up the whole room with a "I dit dee Miss Andrea!" and a giggle.
Let's hope that going back to school and the appointment and the therapy all do him some good today and don't throw him too far off the edge.....I really don't want a crabby, non talking child this afternoon.
Kids are back to school, husband is back to work, the house is quiet as Otis and I get some rest to gather our sanity at least for a couple hours today.
Today is Zach's first appointment of the new year (his dietitian). To be honest I'm really not looking forward to taking him in. Since school started his feeding schedule has varied so much that most times he wasn't getting all he needed in. The fits were many, he was sick, the refusal to feed on his pump was there, the tears were there, the screams were there....it has just been rough! Over break I was able to try to change things around for him in hopes of making it easier now that he is in school -- a schedule that he will be able to keep in or out of school, something that I hope will work for all of us. He is such a stickler with his schedule and how things work. I have to admit I'm a bit worried to see where his weight is, my fingers are crossed he has at least maintained.
Zach also gets back on his therapy schedule again today.........2 weeks off really sends the little man for a loop. I was talking with him this morning and said we get to go see Miss Andrea today and his smile lit up the whole room with a "I dit dee Miss Andrea!" and a giggle.
Let's hope that going back to school and the appointment and the therapy all do him some good today and don't throw him too far off the edge.....I really don't want a crabby, non talking child this afternoon.
Friday, January 1, 2010
Otis
I just wanted to share Otis @ 3 months oldHe is truly the best decision we made in all of 2009!
Zachary is seeking him out to calm himself. It is an amazing sight to watch. I hope in 2010 Otis continues to be a wonderful fur brother for both of our kids.
2010 Started With a BANG!
I sit here and look back on 2009 and what a year it was. I sure hope 2010 goes better then it has started, our house has all been sick, the good news of it all is A. we've gotten it all out of the way and B. we are all on the mend.
January is shaping up to be a busy month for the little man...
Starting on the 4th for a check in with his dietitian.....and she isn't going to be happy. It has been rather hard since he started school dealing with his feeds and getting all he needs into him. This break has helped a ton because I have been able to up his dose into 3 feeds not 4 and still run them at an hour or a little longer. This is HUGE....meaning his little tummy is tolerating more volume.
The 5th both kids have their 6 month check with the dentist. It is never a great time for Zachary, but if you recall last appointment went better then I thought with little along the lines of a shut down. Fingers crossed Tuesday goes as smoothly.
We are adding a new doctor to our list this month a child psychologist. Zach's first appointment is the 19th and I am excited to hear her take on my little man and his situation. I've been very quiet about what has been going on with him because I'm worried and a bit taken back by it all. There have been lots in his life that seem so overwhelming to me and for some reason this is at the top for me. It isn't everyday you hear of a 3 year old going for a psychological evaluation. As I've been reminded by some.....we don't know that anything is psychologically wrong with him, but from what I've been seeing so much more of I would venture to say there is and I can not ignore what is happening.
We also have to get back on schedule with school and therapy -- this is never an easy task for Zach to get used to.
I was also very fortunate to have a lovely lady pop into my life.....you know I feel like things just happen for a reason and some people are able to really point you in another direction. This woman is a truly AMAZING mother and person....she is an angel walking on Earth. It was because of My Button Buddies that she called and the conversation went from the pads to diagnosis of our children. I learned about her daughter, Ana and their families journey to find answers. Here is her blog for those of you interested in reading http://www.helpcureanamaria.com/ By meeting (well, over the phone Emmy) I learned a lot and was able to pass more information on to Zachary's pediatrician....Please hope and pray Zachary is able to get into the doctor that Emmy told me about....Maybe 2010 will bring some answers for Little Zachary!
January is shaping up to be a busy month for the little man...
Starting on the 4th for a check in with his dietitian.....and she isn't going to be happy. It has been rather hard since he started school dealing with his feeds and getting all he needs into him. This break has helped a ton because I have been able to up his dose into 3 feeds not 4 and still run them at an hour or a little longer. This is HUGE....meaning his little tummy is tolerating more volume.
The 5th both kids have their 6 month check with the dentist. It is never a great time for Zachary, but if you recall last appointment went better then I thought with little along the lines of a shut down. Fingers crossed Tuesday goes as smoothly.
We are adding a new doctor to our list this month a child psychologist. Zach's first appointment is the 19th and I am excited to hear her take on my little man and his situation. I've been very quiet about what has been going on with him because I'm worried and a bit taken back by it all. There have been lots in his life that seem so overwhelming to me and for some reason this is at the top for me. It isn't everyday you hear of a 3 year old going for a psychological evaluation. As I've been reminded by some.....we don't know that anything is psychologically wrong with him, but from what I've been seeing so much more of I would venture to say there is and I can not ignore what is happening.
We also have to get back on schedule with school and therapy -- this is never an easy task for Zach to get used to.
I was also very fortunate to have a lovely lady pop into my life.....you know I feel like things just happen for a reason and some people are able to really point you in another direction. This woman is a truly AMAZING mother and person....she is an angel walking on Earth. It was because of My Button Buddies that she called and the conversation went from the pads to diagnosis of our children. I learned about her daughter, Ana and their families journey to find answers. Here is her blog for those of you interested in reading http://www.helpcureanamaria.com/ By meeting (well, over the phone Emmy) I learned a lot and was able to pass more information on to Zachary's pediatrician....Please hope and pray Zachary is able to get into the doctor that Emmy told me about....Maybe 2010 will bring some answers for Little Zachary!
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