What a weekend it has been!
Zoe has her first black eye....Otis was hyper because of Zoe and she was sitting on the couch when Otis decided it would be fun to jump up there behind her and knock her off. Zoe's right eye does not look so good from the hit it took on the edge of the coffee table. She's says it doesn't hurt now unless she touches it. So hopefully it will be gone soon.
Zachary has been all out of sorts and his dyspraxia showed its ugly face more times then I care to count this weekend. Lots of forgetting words, drooling, groping, and falling when walking. We've also had lots of issues with not understanding things, causing some tantrums to take place.
To top off all of this, today has been a VERY bad diarrhea day - or a very bad stomach day for him. I simply can't explain it to those of you who have not experienced his BM's for yourself - but I will try. They smell so very foul that we need to change his pants if we don't the smell still lingers making us think there is a poop when in fact there isn't. Today Doug asked Zach what it smells like to him (as they were both choking over changing him) and Zach's answer was "smells like vomit" I laughed when Doug told me but the sad thing is they kind of do smell that way mixed with awful smelling poopy smell. My description of the smell does not do it justice -- I have honestly never smelt something so bad in my entire life! I know this is really gross to talk about but the smell that comes from him is so very abnormal. AND today we dealt with the smell 4 times. Poor kid.....poor smelly little man. Hopefully tomorrow will not be the same for him and his teachers.
Tomorrow we have another appointment with the psychologist. We have the papers she wanted us to answer all filled out and ready to go. I sure hope we hear more from her about what she thinks is going on and how she can help us to help him more. If not this will possibly be the last appointment we go to. We just can not afford to see her weekly paying 100% out of pocket on top of all the other medical bills/expense we already have for Zachary.
Sunday, January 31, 2010
Friday, January 29, 2010
Hello...I'm Here....Sorta
WOW I never thought this would happen....I've been neglecting my blog - once again.
This CraingBridge page has me forgetting all about where my journey started.....right here with blogger and I need to remember how much writing on here has gotten me threw!
No real new anything to report....I'm tired of double posting, it feels too repetitive.
Zach is okay he had a good nights sleep -- but somehow I feel like I'm still lacking in the sleep department.
The kids both had their report cards this week. I'm in shock at how fast the school year is passing us by.
Zachary is doing GREAT and progress is being made.
Zoe is simply AMAZING this kid is so good in school -- she really must get it from Daddy, as Mommy never liked school the way Zoe does (at least for now). All M's and 1's -- the best it can be in 1st grade and a wonderful note from the teacher as well, about how well Zoe is doing and how impressed she is by her abilities and that she just wants to keep encouraging her to keep up all the hard work.
This CraingBridge page has me forgetting all about where my journey started.....right here with blogger and I need to remember how much writing on here has gotten me threw!
No real new anything to report....I'm tired of double posting, it feels too repetitive.
Zach is okay he had a good nights sleep -- but somehow I feel like I'm still lacking in the sleep department.
The kids both had their report cards this week. I'm in shock at how fast the school year is passing us by.
Zachary is doing GREAT and progress is being made.
Zoe is simply AMAZING this kid is so good in school -- she really must get it from Daddy, as Mommy never liked school the way Zoe does (at least for now). All M's and 1's -- the best it can be in 1st grade and a wonderful note from the teacher as well, about how well Zoe is doing and how impressed she is by her abilities and that she just wants to keep encouraging her to keep up all the hard work.
Monday, January 25, 2010
Weekend Update and What's New
This is going to be really loooooong. I posted to Zach's CaringBridge site but neglected my blog...too much going on. So here is the copy/paste addition.
I am very conflicted right now about what to do and what is going on.......
First a small update on Zachary.
He had his first feed toward the end he complained of pain. We stopped it early.
Then the diarrhea came....it was bad and oh so foul smelling I needed to change his pants (this is extremely common with his bowel movements).
He was out of sorts most of the day with spurts of energy and happiness here and there. He has wanted carried a lot today and we've been hearing "I want up" a lot more lately but today he was really bad with wanting/needing carried around.
His second feed he refused.His third feed, he gave into letting us hook him up but is now screaming "mommy stop my pump" and crying. - small update -- Doug now has him laughing and enjoying football, while still using his pump :) -- another small update: we've had to stop this feed too :(
To top this all off Doug's Grandma is in serious condition after experiencing her 2nd major heart attack this week. My in-laws are on their way up there first thing tomorrow. AND we have no clue if we will be able to make it up there because of all that is happening here. Zach is getting worse and travel will be very hard (we have not traveled in 2 years and now that things are even different there is such a fear to be far from our doctors). Doug is contemplating going without the kids and I but worried about us being here with no help. I know that Grandma knows and would understand. Doug is very grateful he was able to talk with her last night and let her know he loves her as do we all.I know my CaringBridge site is about Zach but please keep Doug's family in your thoughts during this difficult time. Grandma has lived a very long wonderful life and we all want her to have some comfort and peace.
Right now all I want to do is cry!
Last night was a horrible night for Zachary. He woke up screaming - yet again. We got most of it on tape. This episode lasted about 30 minutes. He would tense up and then just shake his arms and legs. He would move his head....but not just move it more like throw it back and forth. He wanted to be in my lap but did not want me to touch him. He screamed until he turned blue. I'm unsure tears were even coming out the whole time. The scream is blood curdling it sounds as if we are hurting our son. These episodes are becoming much more frequent and much harder to watch as they happen. They wear him out.....he needs to be carried back to his room like you carry an infant.
This morning was the first time I saw something new......He wouldn't wake up. He was laying in his bed, on his tummy and I can't even say he looked peaceful, he looked stiff. Normally the sound of his door opening wakes him - not today. This is the first time in 3 years his door did not wake him. Me rustling in his room did not wake him, me talking softly to him did not wake him. It was not until I physical touched him that his eyes opened. It was as if this last episode took so much out of him.
I reminded him he had school and he let me put him on his changing table to get him ready. While he was up there he asked if I was picking him up at school and I told him no he will ride the bus home. He flipped out and started crying and saying "I no no go"I sent him to school anyway. I feel mean for it, but he is not sick. I've been reading one of the best things to do when the child is having a bad day is to send them to school so the teacher can see the difference in the child. This way we have more support when we need it from another area. I did send a note stating I will pick him up if need be.
BUT I am hoping he will start to have a better day.I'm also very upset because I have bad news to report.....we do not have an appointment in Atlanta yet. The doctor up there needs a referral letter from our pediatrician. She sent one 2 weeks ago......I sent a copy of it with all the records we sent up there AND yet they are saying they don't have it. I sent another one just a little bit ago and at 9am I will call our doctor here and have her call them. UGH this is such a pain!!!!!!
-------small update: I just heard back from Camille (she is the scheduling coordinator) she received the letter I just sent and will contact me with an appointment if indicated from the doctor as soon as she hears from them. PLEASE if you pray please pray we hear something...something positive with an appointment soon! For Zach's sake and for our sanity we really need some answers as we are watching our son getting worse.
Well, I have become really frustrated over the episodes that keep happening more frequently and are becoming worse. So I called the pediatrician this morning and she had me get Zach and bring him in. She wanted to make sure these aren't seizure activity.
I picked up Zach and headed to the doctor. He was happy to see me and was having a good day at school. When I got there he was with Coach --- I never knew that they take the kids in small groups for extra PE. I'll just think of it as some extra PT he needs :)We got to the doctor and were seen right away (she is always so good about that - sure makes going there easier) She wants Zach to see yet another doctor a neurologist but not the same one we've seen....this one specializes in something else. _ Please forgive me for being vague, I have a lot going on in my head right now. She is going to e-mail this doctor personally today to let her know the severity of Zachary's case. She is hoping that she will see Zach quickly and also run a sleep study as well as electromyogram (EMG) and anerve conduction velocity (NCV). The last 2 tests are to help rule out MD. We had a worry of possible MD in the past and some blood tests that were done basically didn't rule anything out but the two neurologists that we've seen both agreed to continue being watchful. So with all that is happening she feels it best to move forward with some more testing for MD -- just in case.
It is very hard for me to explain....Zach looks normal, and pretty much acts normal - but there are times where he can't do normal things. He seems to be having a lot of that lately. Like this weekend we were at Publix and Zach was making this new noise he makes (kind of like a grunting sound) an older woman walked past us and says "That is an awful noise your son is making" She made me feel bad and poor Zach he looked so worried and wouldn't you know the sound became worse after she said something to us. OR Zach's feet turn in when he walks, or sometimes he can only walk stomping or up on his toes. OR talking his first sound was the D sound and this weekend he could NOT use the D sound when trying to say "drop" -- what would normally come out clear came out so messed up he was frustrated we had no idea what he was taking about. OR Zach asking to be carried a lot more lately. OR Zach holding scissors in one had but needed his OT to actually move his other arm and hand -- help put paper in the hand and hold his hand shut because he could NOT do it himself. I don't know...these are just a few of the many examples I could list. BUT I have to add just like I told the doctor these things DO happen but so far they aren't happening all of the time but they are occurring much more frequently.
As Dr M says "there is regression happening, and we want to try to stop it from occurring if at all possible or at least find out what is causing it"While we were at her office she had the progress note from Dr E. It was very dishearteningto read what he thinks. I knew from talking with him, but seeing this in black and white just seem worse sometimes. Dr M is going to do some research on treatment for mitochondrial disease so that she is up to speed as she can be. I'm scared, as we now have 3 doctors who really think this is a high possibilityof what we are dealing with.
Please pray for my little boy!
I am very conflicted right now about what to do and what is going on.......
First a small update on Zachary.
He had his first feed toward the end he complained of pain. We stopped it early.
Then the diarrhea came....it was bad and oh so foul smelling I needed to change his pants (this is extremely common with his bowel movements).
He was out of sorts most of the day with spurts of energy and happiness here and there. He has wanted carried a lot today and we've been hearing "I want up" a lot more lately but today he was really bad with wanting/needing carried around.
His second feed he refused.His third feed, he gave into letting us hook him up but is now screaming "mommy stop my pump" and crying. - small update -- Doug now has him laughing and enjoying football, while still using his pump :) -- another small update: we've had to stop this feed too :(
To top this all off Doug's Grandma is in serious condition after experiencing her 2nd major heart attack this week. My in-laws are on their way up there first thing tomorrow. AND we have no clue if we will be able to make it up there because of all that is happening here. Zach is getting worse and travel will be very hard (we have not traveled in 2 years and now that things are even different there is such a fear to be far from our doctors). Doug is contemplating going without the kids and I but worried about us being here with no help. I know that Grandma knows and would understand. Doug is very grateful he was able to talk with her last night and let her know he loves her as do we all.I know my CaringBridge site is about Zach but please keep Doug's family in your thoughts during this difficult time. Grandma has lived a very long wonderful life and we all want her to have some comfort and peace.
Right now all I want to do is cry!
Last night was a horrible night for Zachary. He woke up screaming - yet again. We got most of it on tape. This episode lasted about 30 minutes. He would tense up and then just shake his arms and legs. He would move his head....but not just move it more like throw it back and forth. He wanted to be in my lap but did not want me to touch him. He screamed until he turned blue. I'm unsure tears were even coming out the whole time. The scream is blood curdling it sounds as if we are hurting our son. These episodes are becoming much more frequent and much harder to watch as they happen. They wear him out.....he needs to be carried back to his room like you carry an infant.
This morning was the first time I saw something new......He wouldn't wake up. He was laying in his bed, on his tummy and I can't even say he looked peaceful, he looked stiff. Normally the sound of his door opening wakes him - not today. This is the first time in 3 years his door did not wake him. Me rustling in his room did not wake him, me talking softly to him did not wake him. It was not until I physical touched him that his eyes opened. It was as if this last episode took so much out of him.
I reminded him he had school and he let me put him on his changing table to get him ready. While he was up there he asked if I was picking him up at school and I told him no he will ride the bus home. He flipped out and started crying and saying "I no no go"I sent him to school anyway. I feel mean for it, but he is not sick. I've been reading one of the best things to do when the child is having a bad day is to send them to school so the teacher can see the difference in the child. This way we have more support when we need it from another area. I did send a note stating I will pick him up if need be.
BUT I am hoping he will start to have a better day.I'm also very upset because I have bad news to report.....we do not have an appointment in Atlanta yet. The doctor up there needs a referral letter from our pediatrician. She sent one 2 weeks ago......I sent a copy of it with all the records we sent up there AND yet they are saying they don't have it. I sent another one just a little bit ago and at 9am I will call our doctor here and have her call them. UGH this is such a pain!!!!!!
-------small update: I just heard back from Camille (she is the scheduling coordinator) she received the letter I just sent and will contact me with an appointment if indicated from the doctor as soon as she hears from them. PLEASE if you pray please pray we hear something...something positive with an appointment soon! For Zach's sake and for our sanity we really need some answers as we are watching our son getting worse.
Well, I have become really frustrated over the episodes that keep happening more frequently and are becoming worse. So I called the pediatrician this morning and she had me get Zach and bring him in. She wanted to make sure these aren't seizure activity.
I picked up Zach and headed to the doctor. He was happy to see me and was having a good day at school. When I got there he was with Coach --- I never knew that they take the kids in small groups for extra PE. I'll just think of it as some extra PT he needs :)We got to the doctor and were seen right away (she is always so good about that - sure makes going there easier) She wants Zach to see yet another doctor a neurologist but not the same one we've seen....this one specializes in something else. _ Please forgive me for being vague, I have a lot going on in my head right now. She is going to e-mail this doctor personally today to let her know the severity of Zachary's case. She is hoping that she will see Zach quickly and also run a sleep study as well as electromyogram (EMG) and anerve conduction velocity (NCV). The last 2 tests are to help rule out MD. We had a worry of possible MD in the past and some blood tests that were done basically didn't rule anything out but the two neurologists that we've seen both agreed to continue being watchful. So with all that is happening she feels it best to move forward with some more testing for MD -- just in case.
It is very hard for me to explain....Zach looks normal, and pretty much acts normal - but there are times where he can't do normal things. He seems to be having a lot of that lately. Like this weekend we were at Publix and Zach was making this new noise he makes (kind of like a grunting sound) an older woman walked past us and says "That is an awful noise your son is making" She made me feel bad and poor Zach he looked so worried and wouldn't you know the sound became worse after she said something to us. OR Zach's feet turn in when he walks, or sometimes he can only walk stomping or up on his toes. OR talking his first sound was the D sound and this weekend he could NOT use the D sound when trying to say "drop" -- what would normally come out clear came out so messed up he was frustrated we had no idea what he was taking about. OR Zach asking to be carried a lot more lately. OR Zach holding scissors in one had but needed his OT to actually move his other arm and hand -- help put paper in the hand and hold his hand shut because he could NOT do it himself. I don't know...these are just a few of the many examples I could list. BUT I have to add just like I told the doctor these things DO happen but so far they aren't happening all of the time but they are occurring much more frequently.
As Dr M says "there is regression happening, and we want to try to stop it from occurring if at all possible or at least find out what is causing it"While we were at her office she had the progress note from Dr E. It was very dishearteningto read what he thinks. I knew from talking with him, but seeing this in black and white just seem worse sometimes. Dr M is going to do some research on treatment for mitochondrial disease so that she is up to speed as she can be. I'm scared, as we now have 3 doctors who really think this is a high possibilityof what we are dealing with.
Please pray for my little boy!
Thursday, January 21, 2010
As Promised....
AN UPDATE
Zach got into Atlanta. We are still waiting on the dates but we received all the new patient information and I was to send it back stating we have it. Hopefully we will have the dates tomorrow....then I will be 100% he is going.
Zach had a very rough day at school and was in much pain. I picked him up and we headed to his GI appointment.....it was a decent appointment. We spoke a lot about Mito and going to Dr Schoffner and what our GI wanted to do.
GI: is all for Atlanta and thinks it is the right step to take and in the right direction. However he told me as much as he'd like for us all to figure out Zachary he is really hoping the signs aren't right. He told me that in his 20+ years of practice he has ever only seen a handful of children with mito and it was never a good thing. There was so much more said........He started talking about wanting to do more scopes on Zach now BUT was very fearful of doing them because "if" this is what he has going under anesthesia is VERY risky (yes, it is always risky) but he was saying it is even more so in people with mito. I asked if this is a reason Zach had a really hard time when he had his button placed and he said "I forgot how bad that was, and yes this is making sense" There were a couple more things he linked to Zach possibly having mito as well.
I'm just so tired I'm not even seeing straight at this point. As much as I want answers I am now conflicted with if I really want those answers.
Zach got into Atlanta. We are still waiting on the dates but we received all the new patient information and I was to send it back stating we have it. Hopefully we will have the dates tomorrow....then I will be 100% he is going.
Zach had a very rough day at school and was in much pain. I picked him up and we headed to his GI appointment.....it was a decent appointment. We spoke a lot about Mito and going to Dr Schoffner and what our GI wanted to do.
GI: is all for Atlanta and thinks it is the right step to take and in the right direction. However he told me as much as he'd like for us all to figure out Zachary he is really hoping the signs aren't right. He told me that in his 20+ years of practice he has ever only seen a handful of children with mito and it was never a good thing. There was so much more said........He started talking about wanting to do more scopes on Zach now BUT was very fearful of doing them because "if" this is what he has going under anesthesia is VERY risky (yes, it is always risky) but he was saying it is even more so in people with mito. I asked if this is a reason Zach had a really hard time when he had his button placed and he said "I forgot how bad that was, and yes this is making sense" There were a couple more things he linked to Zach possibly having mito as well.
I'm just so tired I'm not even seeing straight at this point. As much as I want answers I am now conflicted with if I really want those answers.
Feeling Very......
Anxious for some answers.....
It was another long night with Zachary. He woke up at 2am....this time there were no screams, he just walked into our room and climbed into the bed while whimpering. This is TOTALLY out of character for him - even as an infant this child did not like sleeping with us, he has ALWAYS needed his own space. Once in our bed he started crying and having a rough time. His breathing is very hard for me to explain but I will try......it has been sounding if too much air is going in threw or coming out of his nose even when I ask him to breathe out of his mouth all I can hear is the air threw his nose. The breathing issues are not just happening at night they also happen during the day as well. This has been happening for a while and is getting progressively worse. He does not have a cold and as of last week the allergist said his passageway is clear. Zachary is to see his ENT in March but I think I will check in with them today about this.
We let Zach lay with us for a while to try and calm him, then I tried to put him in his own room. He wanted nothing to do with being in there. I said "Mommy will lay with you a little while" and he replied "I no want to be in here, doh in your bed" and then the tears came, then the breath holding came and mommy was scared for him and also very tired so I moved him back in with us to where we listened to more crying which slowly turned into whimpering.
Daddy seemed to sleep okay, but Mommy was up the rest of the night until the alarm went off. I am very happy for the peace and quiet that is here right now.
Anxious because......... WE HEARD FROM the doctor up in Atlanta :) He still needs to review the information we sent but the scheduling coordinator contacted us first thing this morning and is checking our benefits with the insurance company. I am hopeful this is a good sign he will be seen. We just wait until we hear something more at this point.
Anxious because.......... today is Zach's appointment with the GI. I have no idea what is happening and having to move 2 appointments up so fast is just mind reeling for me at this moment.
Anxious......... to hear what this doctors plan of attack will be.
Anxious......... about the appointment because either we will hear something or it will be another one of those "well we just don't know" The dietitian has mentioned that he mentioned J-Tube and more biopsies/tests -- that in itself has me anxious since Zach has already been threw so much.
Hopefully as the day goes on we will be getting all positive news.
It was another long night with Zachary. He woke up at 2am....this time there were no screams, he just walked into our room and climbed into the bed while whimpering. This is TOTALLY out of character for him - even as an infant this child did not like sleeping with us, he has ALWAYS needed his own space. Once in our bed he started crying and having a rough time. His breathing is very hard for me to explain but I will try......it has been sounding if too much air is going in threw or coming out of his nose even when I ask him to breathe out of his mouth all I can hear is the air threw his nose. The breathing issues are not just happening at night they also happen during the day as well. This has been happening for a while and is getting progressively worse. He does not have a cold and as of last week the allergist said his passageway is clear. Zachary is to see his ENT in March but I think I will check in with them today about this.
We let Zach lay with us for a while to try and calm him, then I tried to put him in his own room. He wanted nothing to do with being in there. I said "Mommy will lay with you a little while" and he replied "I no want to be in here, doh in your bed" and then the tears came, then the breath holding came and mommy was scared for him and also very tired so I moved him back in with us to where we listened to more crying which slowly turned into whimpering.
Daddy seemed to sleep okay, but Mommy was up the rest of the night until the alarm went off. I am very happy for the peace and quiet that is here right now.
Anxious because......... WE HEARD FROM the doctor up in Atlanta :) He still needs to review the information we sent but the scheduling coordinator contacted us first thing this morning and is checking our benefits with the insurance company. I am hopeful this is a good sign he will be seen. We just wait until we hear something more at this point.
Anxious because.......... today is Zach's appointment with the GI. I have no idea what is happening and having to move 2 appointments up so fast is just mind reeling for me at this moment.
Anxious......... to hear what this doctors plan of attack will be.
Anxious......... about the appointment because either we will hear something or it will be another one of those "well we just don't know" The dietitian has mentioned that he mentioned J-Tube and more biopsies/tests -- that in itself has me anxious since Zach has already been threw so much.
Hopefully as the day goes on we will be getting all positive news.
Wednesday, January 20, 2010
Happy
I'm happy to post that as I type this all of Zach's records are on their way to the doctor....not by mail BUT by e-mail so they get there TODAY!!!!! My wonderful husband has his secretary working on transferring the paper to pdf files and e-mailing one file at a time. They think it will be sent in about 7 e-mails. We have 192 pieces of paper to deal with.
I'm happy that Doug read the paperwork better then I did to see that the files could be faxed or e-mailed. I guess, all that working on filling the questioner out right and getting the records I overlooked the options of sending all that information - let's hope I didn't overlook anything else. BUT boy am I HAPPY we found an easier....FASTER way of getting them up to Atlanta.
Now I guess the real wait begins to see what will happen next......
I'm happy that Doug read the paperwork better then I did to see that the files could be faxed or e-mailed. I guess, all that working on filling the questioner out right and getting the records I overlooked the options of sending all that information - let's hope I didn't overlook anything else. BUT boy am I HAPPY we found an easier....FASTER way of getting them up to Atlanta.
Now I guess the real wait begins to see what will happen next......
Tuesday, January 19, 2010
Productive Day
I am happy to report that we officially have ALL of Zach's medical records in our hands.
At this moment Doug is busy copying them so we never have to pay for this past years worth again. It is ashamed that the doctors who can not figure out what is wrong with our son charge for us to have our own records to get seen by another doctor! OH but if I would have had them send the records it would have be free. It just irritates me to no end we had to spend $100 on our sons records.
BUT on the good, positive, flip side we have them! I will be sending them overnight tomorrow and hopefully getting in contact with their office by Friday and hoping (fingers crossed) to hear Dr Schoffner will see Zachary soon :)
At this moment Doug is busy copying them so we never have to pay for this past years worth again. It is ashamed that the doctors who can not figure out what is wrong with our son charge for us to have our own records to get seen by another doctor! OH but if I would have had them send the records it would have be free. It just irritates me to no end we had to spend $100 on our sons records.
BUT on the good, positive, flip side we have them! I will be sending them overnight tomorrow and hopefully getting in contact with their office by Friday and hoping (fingers crossed) to hear Dr Schoffner will see Zachary soon :)
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