Hello everyone!
Quick version: the doctor appointment regarding allergy testing went very well today. Long talk with the dr, and did not need to be poked! :) His fevers are not an issue.
Now the interesting version!!! LOL
It all began yesterday when I talked to my supportive, Dear Husband on his way home from work. (we planned for him to come along to the appointment to help me and be supportive) It basically went like this:
Daryl, "Does Mason really have to go? You know I'm going to try talking you out of it during the appointment!!"
Shirley,"Should I call my friend to come along?"
Daryl, "We'll talk about it later."
So we got off the phone, and I immediately called my friend who had offered this help a month ago. Yes, she could come!! Last thing I needed was Daryl trying to derail what needed to be done!! It was GREAT to have her come along and help. Even though I (thankfully) didn't need help to hold him down to get pricked, she kept Mason busy so I could talk to the doctor without distractions. Which is huge.
So, because I know pretty much all the questions they're going to ask me, I had a two page brief history from birth to now written up. So when the doctor started to ask about Mason, I just handed it to him. It always makes the time and topics more efficient, and makes it clearer for the doctor to evaluate everything. I always do that when we see someone new, and have done a lot of documenting before surgery.
So regarding allergies: he does not have any allergies beyond the grass ones we saw in summer. Basically it is the doctor's opinion that the allergy medication is causing the seizure medications to metabolize slower in his liver thus increasing the dose in his blood system, as well as keeping it in his system longer, rather than having the liver eliminate it as efficiently. So I'm going to experiment a bit with giving him a lower dose and see if it will still help control the seizures while using the minimum amount of antihistamine. I will talk further with Dr Connolly at Children's Hospital in March.
Because Mason was not showing any signs of allergies, testing at this time is not necessary. We were in the appointment for 40 minutes with me asking a lot of questions, and I am very satisfied with the explanations.
Regarding the fevers that Mason has been having: Because they increase the seizures, I needed to check them out. This doctor ( a pediatrician/allergist) said that kids this age have an average of 1 or 2 fevers per month. That surprised me, because Mason is typically the kind of kid that gets sick once or twice per year!! But I think because he is now interacting with others a lot more (seizures are not putting him out of commission) he's catching the bugs that are going around! And the reason that he often does not get symptoms is that not all viruses have symptoms of runny nose etc!! So it's just a matter of getting the Advil into him quickly when the fever hits.
We also talked about a couple of other allergies: Mason (and Asia) used to be allergic to peanut butter - but NOT peanuts. The more natural the peanut butter, the bigger likely hood of breaking out into hives. The types with more additives like sugar, oils, etc (like Kraft or Jiff) would not cause a reaction. The doctor had never heard of this before. Both kids grew out of this allergy.
Then we talked about dairy. Mason can tolerate cheese, whipped cream, butter and a trace of icecream. But not milk and yogurt. (Mason used to not be able to tolerate any at all. Even the margarine in a cookie would cause severe runs out the back end) So we are going to try lactaid, to see if he is lactose intolerant as the doctor suspects. That would make life a lot easier. He's been on goat milk for 8 years, and we always have to check ingredients and watch out for everything.
Well there we go. That appointment went soooo much easier than I expected (especially after getting my supportive DH out of the way!!!!) Thank you to my friend M E for coming along on such short notice!! (Then we went for lunch mmmmm) Thank you to all of you who prayed. I got ALL the answers to my questions. I wish I could go for lunch with ALL of you!!
btw, Toilet Training is going EXTREMELY WELL!!!! That timer goes every 30 minutes and Mason jumps up and off he goes to the bathroom ('froom' as he says it). At home he's still in a diaper, but it stays dry nearly all the time!! :) :)
Well, TTFN!!
Shirley
Tuesday, January 15, 2008
Saturday, January 12, 2008
Well, I have been thinking about sending out a prayer request email, but a major one is already turning into a praise!!!
We are in the midst of toilet training Mason! He will be 9 in March, so it's about time!!!!! Thankfully we've been on a funding program that provides diapers, and now Goodnights, wipes, and bed pads for us. And they get delivered to our door as well!! That's a lot of years of a costly necessity!
Mason's special ed teacher did some in May and June last year, and with the fall being so busy for especially special ed teachers, she started again on the first day back to school after Christmas. And he has been fully cooperating!! I started at home on Tuesday after school. The first four times I literally had to peel him off the floor kicking and screaming and hold him down on the toilet for 5 minutes. (he didn't produce anything either) I was EXHAUSTED!! I have a timer that beeps every half hour. On the fifth time, he heard the beeper, when and got it and went straight to the bathroom without a fuss!! So I knew it would be a BATTLE of the wills!! So those next few times, until bed time, he made a deposit into the toilet!! Of both varieties!!! ( I'm sparing you some of the actual details, but I'm sure you understand...)
So Wednesday he only fought me two times, then became very willing, and actually only made a deposit into his diaper only once all evening!! We were also calling a variety of people to celebrate with Mason over the phone. He really liked that!
Today, Thursday, there has been NO opposition at all!!! In fact, each time he sat down, he produced within the first half minute!!!! WOW AMAZING!!! (this is the most excited mom you will ever encounter regarding toilet training!!! He's a big boy, and eats a lot, and you can imagine the rest...)
This is something I really didn't think would ever happen. So I think this falls into the 'miracle' category.
Here is a prayer request, though. He has an appointment with the allergy specialist on Tuesday, Jan 15 for allergy testing. Daryl will come along, I will need the help. I don't think Mason will be very cooperative.... His blood test results came back with elevated white blood cell count, but he also had a cold that day, he coughed a few times (that's a bad cold for him...) So far we have no clue why he's getting the fevers, other than I think that's as bad as a cold gets for him...
Christmas holidays went well this year, unlike last year. Our funding increased for respite, so that really came into play. Last year I could hardly wait for school to be back on. Other than the average tantrums, this Christmas went really well.
He has an EEG and Neurologist appointment coming up in March. Regular check ups.
He continues to progress like crazy in speech and comprehension. Love it.
So thank you for your continued prayers and interest!
Shirley
We are in the midst of toilet training Mason! He will be 9 in March, so it's about time!!!!! Thankfully we've been on a funding program that provides diapers, and now Goodnights, wipes, and bed pads for us. And they get delivered to our door as well!! That's a lot of years of a costly necessity!
Mason's special ed teacher did some in May and June last year, and with the fall being so busy for especially special ed teachers, she started again on the first day back to school after Christmas. And he has been fully cooperating!! I started at home on Tuesday after school. The first four times I literally had to peel him off the floor kicking and screaming and hold him down on the toilet for 5 minutes. (he didn't produce anything either) I was EXHAUSTED!! I have a timer that beeps every half hour. On the fifth time, he heard the beeper, when and got it and went straight to the bathroom without a fuss!! So I knew it would be a BATTLE of the wills!! So those next few times, until bed time, he made a deposit into the toilet!! Of both varieties!!! ( I'm sparing you some of the actual details, but I'm sure you understand...)
So Wednesday he only fought me two times, then became very willing, and actually only made a deposit into his diaper only once all evening!! We were also calling a variety of people to celebrate with Mason over the phone. He really liked that!
Today, Thursday, there has been NO opposition at all!!! In fact, each time he sat down, he produced within the first half minute!!!! WOW AMAZING!!! (this is the most excited mom you will ever encounter regarding toilet training!!! He's a big boy, and eats a lot, and you can imagine the rest...)
This is something I really didn't think would ever happen. So I think this falls into the 'miracle' category.
Here is a prayer request, though. He has an appointment with the allergy specialist on Tuesday, Jan 15 for allergy testing. Daryl will come along, I will need the help. I don't think Mason will be very cooperative.... His blood test results came back with elevated white blood cell count, but he also had a cold that day, he coughed a few times (that's a bad cold for him...) So far we have no clue why he's getting the fevers, other than I think that's as bad as a cold gets for him...
Christmas holidays went well this year, unlike last year. Our funding increased for respite, so that really came into play. Last year I could hardly wait for school to be back on. Other than the average tantrums, this Christmas went really well.
He has an EEG and Neurologist appointment coming up in March. Regular check ups.
He continues to progress like crazy in speech and comprehension. Love it.
So thank you for your continued prayers and interest!
Shirley
Answers to Prayer
Thank you, Thank you, Thank you for your prayers!!!!!!!
First off, it turned out to be a 'virtual doctor appointment'. Mason wouldn't get out of the car, so the girls stayed there with him and I had the appointment on Mason's behalf. I really like our doctor, and he gives me a lot of latitude. So he wrote up what I needed etc. :)
So I decided to check out the small blood test clinic, in a strip mall so I could see in the window. There was nobody in there, so I quickly popped in to see how many bodies would be available to help. There were two technicians in there and were ready to do it. Then Mason refused to get out of the car again. We finally bribed him with an ice cream cone. (he says 'ice cream' really well!! and he can have a tiny amount of it : >) So he went in, and right away turned around and ran back to the car. I noticed someone standing nearby, but ignored her as I struggled with Mason, trying to get him back into the clinic. I then let Mason back into the car.
The person started talking to me... it was Nancy, who I've known for several years, but haven't seen in a long time!!! She offered to help!!!! Can you believe the timing?????? So we finally got Mason in and onto the bed. That was no small feat!!! Nancy held his legs down, I lay across his torso and held his left arm down. One technician held his right arm straight while the other drew blood. We could not have done it without Nancy!!! Part way through, Nancy told Mason is was almost done. He instantly stopped screaming and struggling! When they pulled out the needle, Mason said, "Thank you."!! We all laughed!! As we walked out, Mason called back, "Bye bye!" - happy as a lark.
And so off we went to get an ice cream. :) :)
So God provided help in the EXACT moment I needed it, AND I get to re-connect with an old friend! :)
Shirley
First off, it turned out to be a 'virtual doctor appointment'. Mason wouldn't get out of the car, so the girls stayed there with him and I had the appointment on Mason's behalf. I really like our doctor, and he gives me a lot of latitude. So he wrote up what I needed etc. :)
So I decided to check out the small blood test clinic, in a strip mall so I could see in the window. There was nobody in there, so I quickly popped in to see how many bodies would be available to help. There were two technicians in there and were ready to do it. Then Mason refused to get out of the car again. We finally bribed him with an ice cream cone. (he says 'ice cream' really well!! and he can have a tiny amount of it : >) So he went in, and right away turned around and ran back to the car. I noticed someone standing nearby, but ignored her as I struggled with Mason, trying to get him back into the clinic. I then let Mason back into the car.
The person started talking to me... it was Nancy, who I've known for several years, but haven't seen in a long time!!! She offered to help!!!! Can you believe the timing?????? So we finally got Mason in and onto the bed. That was no small feat!!! Nancy held his legs down, I lay across his torso and held his left arm down. One technician held his right arm straight while the other drew blood. We could not have done it without Nancy!!! Part way through, Nancy told Mason is was almost done. He instantly stopped screaming and struggling! When they pulled out the needle, Mason said, "Thank you."!! We all laughed!! As we walked out, Mason called back, "Bye bye!" - happy as a lark.
And so off we went to get an ice cream. :) :)
So God provided help in the EXACT moment I needed it, AND I get to re-connect with an old friend! :)
Shirley
Good evening!! Merry Christmas season!!!
Well first, I'll tell you something exciting. A few weeks ago Mason started calling me "Mommy"!!! One of the most exciting milestones ever!! At least for me. He's been able to say "Mom" for a few years, but there's something about being called Mommy... ahhhhhhh.
A week later he started calling Daryl, "Daddy"!! Two syllable words have been extremely difficult for Mason, so this is quite huge.
Mason loves singing the christmas songs, like Rudolph the Red Nosed Reindeer, and Frosty the Snowman (loves watching that on TV!!) I have no clue what he understands about the real Christmas story of Jesus, but he says 'baby' when he sees the pictures or nativity scenes. He loves playing in the snow ... yes we've had it a few times now. And it's cold enough to have to wear a jacket, not just our cute puffy vests. Well, the girls are still wearing their vests, I can't convince them to dress warmer...
Thanks again for your prayers for my friend in Alababma, whose little boy has what Mason has. She was so grateful, and they've adjusted the medications as a result of the testing. Not sure yet how that has affected the seizures. Time will tell.
So here's a prayer request for Mason:
He has some unusual things going on that are affecting him and increasing his seizures a bit. I will emphasize 'a bit', in the big picture, it's hardly anything, BUT we don't want to start a trend of increases in seizures.
Unusual things:
1. In summer Mason had hayfever for the first time in his life. Because of the seizures and medication interactions, he's never been able to have cold or allergy medications. But the sneezing etc got so bad that it triggered a lot more seizures and I finally asked the pharmacist if there was anything we could do. So we gave him the newest one on the block. It worked on the hayfever, and brought his daily seizures back down to a few mild ones per day. :) The unusual thing here was that after the allergy season was over and I stopped giving him the allergy meds, the seizures went up again! So I have been trying it out this fall, and sure enough, when he is taking it daily, seizures are down.
2. Mason has been having random fevers without getting sick. They are very low temperatures, but what happens is that they trigger seizures, and if not dealt with they go into status, which means he continues to seizure without stopping. Tylenol does nothing, but children's liquid Advil works, thankfully. The next step is IV fluids in the hospital, not pleasant!!! But why does he keep getting these fevers? He had one a couple of weeks ago, without any symptoms of illness, and had another one today, and once again doesn't seem sick at all.
So I talked to our nurse at Childrens Hospital today. One of Mason's meds can lower his white blood cells, so he needs to get a blood test to check that. I'm going to need to take two or three people along with me to help hold him down for that. We also need to find out what's causing them. So far we're only treating the symptoms to keep the seizures at bay.
We are also going to look into allergy testing. We suspect he may have some underlying allergies that are triggering the seizures, even though he doesn't sneeze or sniffle or anything.
Time to pray for: Friday December 14, 3:30 pm for Dr appointment (family doctor) then the blood test some time after that. Then pray for God to give his wisdom, guidance, and knowledge to figure out what's going on, especially as Mason can't communicate any illness, or what he's feeling, with us.
FYI, he has several seizures a day (since a few months after surgery, two years ago), but still next to nothing compared to what it used to be like. He has been waking up at night again with a seizure, but falls back to sleep quickly. (unless he's on the allergy medication, then he sleeps through the night - no seizures to wake him up)
So there we go. It's actually kinda nice to not be asking for prayer nearly as often as I used to. So when you don't hear from me it's because Mason is doing so well, and I get caught up in the 'normal' of life as it is now!!
Well, that was longer than I'd planned to write. Thank you in advance for your thoughts and prayers. And we (the Martens') wish you a wonderful Christmas Season with your friends and families!!! I often think about how amazing it is that Jesus chose to leave his incredible home in Heaven to come to earth, to 'move into our neighborhood', to connect with us and invite us to choose to be His friend. That's what it's all about!!! And all we have to do is say, "yes to Jesus, I want to have a relationship with You!!" If you are reading this and have no clue what I'm talking about, just email me and I'd love to explain more!! He did not come to make another religion.....
Merry Christmas!!!
Shirley
Well first, I'll tell you something exciting. A few weeks ago Mason started calling me "Mommy"!!! One of the most exciting milestones ever!! At least for me. He's been able to say "Mom" for a few years, but there's something about being called Mommy... ahhhhhhh.
A week later he started calling Daryl, "Daddy"!! Two syllable words have been extremely difficult for Mason, so this is quite huge.
Mason loves singing the christmas songs, like Rudolph the Red Nosed Reindeer, and Frosty the Snowman (loves watching that on TV!!) I have no clue what he understands about the real Christmas story of Jesus, but he says 'baby' when he sees the pictures or nativity scenes. He loves playing in the snow ... yes we've had it a few times now. And it's cold enough to have to wear a jacket, not just our cute puffy vests. Well, the girls are still wearing their vests, I can't convince them to dress warmer...
Thanks again for your prayers for my friend in Alababma, whose little boy has what Mason has. She was so grateful, and they've adjusted the medications as a result of the testing. Not sure yet how that has affected the seizures. Time will tell.
So here's a prayer request for Mason:
He has some unusual things going on that are affecting him and increasing his seizures a bit. I will emphasize 'a bit', in the big picture, it's hardly anything, BUT we don't want to start a trend of increases in seizures.
Unusual things:
1. In summer Mason had hayfever for the first time in his life. Because of the seizures and medication interactions, he's never been able to have cold or allergy medications. But the sneezing etc got so bad that it triggered a lot more seizures and I finally asked the pharmacist if there was anything we could do. So we gave him the newest one on the block. It worked on the hayfever, and brought his daily seizures back down to a few mild ones per day. :) The unusual thing here was that after the allergy season was over and I stopped giving him the allergy meds, the seizures went up again! So I have been trying it out this fall, and sure enough, when he is taking it daily, seizures are down.
2. Mason has been having random fevers without getting sick. They are very low temperatures, but what happens is that they trigger seizures, and if not dealt with they go into status, which means he continues to seizure without stopping. Tylenol does nothing, but children's liquid Advil works, thankfully. The next step is IV fluids in the hospital, not pleasant!!! But why does he keep getting these fevers? He had one a couple of weeks ago, without any symptoms of illness, and had another one today, and once again doesn't seem sick at all.
So I talked to our nurse at Childrens Hospital today. One of Mason's meds can lower his white blood cells, so he needs to get a blood test to check that. I'm going to need to take two or three people along with me to help hold him down for that. We also need to find out what's causing them. So far we're only treating the symptoms to keep the seizures at bay.
We are also going to look into allergy testing. We suspect he may have some underlying allergies that are triggering the seizures, even though he doesn't sneeze or sniffle or anything.
Time to pray for: Friday December 14, 3:30 pm for Dr appointment (family doctor) then the blood test some time after that. Then pray for God to give his wisdom, guidance, and knowledge to figure out what's going on, especially as Mason can't communicate any illness, or what he's feeling, with us.
FYI, he has several seizures a day (since a few months after surgery, two years ago), but still next to nothing compared to what it used to be like. He has been waking up at night again with a seizure, but falls back to sleep quickly. (unless he's on the allergy medication, then he sleeps through the night - no seizures to wake him up)
So there we go. It's actually kinda nice to not be asking for prayer nearly as often as I used to. So when you don't hear from me it's because Mason is doing so well, and I get caught up in the 'normal' of life as it is now!!
Well, that was longer than I'd planned to write. Thank you in advance for your thoughts and prayers. And we (the Martens') wish you a wonderful Christmas Season with your friends and families!!! I often think about how amazing it is that Jesus chose to leave his incredible home in Heaven to come to earth, to 'move into our neighborhood', to connect with us and invite us to choose to be His friend. That's what it's all about!!! And all we have to do is say, "yes to Jesus, I want to have a relationship with You!!" If you are reading this and have no clue what I'm talking about, just email me and I'd love to explain more!! He did not come to make another religion.....
Merry Christmas!!!
Shirley
Hello dear friends
This is not so much an update on Mason as a new connection for me. Recently I met a young mom from Alabama on Facebook who has a little boy with the same seizure disorder that Mason has. Kristy has a little boy, Jon Andrew, who is 2 1/2 with Infantile Spasms which is now progressing into Lennox Gastaut Syndrome. Exactly like Mason, only we are a number of years ahead of them. They are in a very difficult place right now, bleak, dark, seemingly no hope. We have had several opportunities to connect online, and have had a couple of long phone calls as well. I feel extremely privileged to be able to encourage her and give her hope, seeing as we are further down the SAME road. Having said that, this is the first time in 7 years that I have had someone to talk to whose child has the SAME condition. Shows how rare LGS is. I'm sure there are others around, I just haven't met them yet. Maybe I'm too shy.....
Anyway, we talked at length on the phone today and I told her how wonderful it's been to have so many people pray for Mason and us and really encouraged her to let those in her life know when and how to pray for them. I also asked her if I could pass it on to my Mason update people. So here is her email!!!
FYI: Mason has had several of these longer EEG's done and it's torture. This is what happens: we strap him down in a full body velcro kind of thing, shoulder to feet, I lay on him, trying to calm him down, as he is screaming the whole time, face beet red (one time he even had peticial hemorrhaging - tiny blood vessels bursting all over his face because he screamed so hard and so long). So for the next 1/2 hour this goes on while the EEG technician marks his head and then glues 25 - 30 leads (wires) onto his head. This happens with all EEG's. In the 24 hour ones ( or longer) he has to stay in bed for the whole time because they monitor him by video as well, and he can't be running around for that!! Never mind that he's hooked up to a head full of wires.
So knowing how hard this is, I would like to ask you to take a quick moment to pray for Jon Andrew. LGS is one of the most severe seizure disorders there are, so the road is long and hard ahead for them. Pray that God will give each of the doctors, nurses, technicians, and all others involved with this baby, HIS wisdom, HIS knowledge, HIS understanding, HIS direction, HIS peace to the family.
Thanks so much,
Shirley
by the way, Mason is doing great, other than having to go to school in his pajamas this morning, because he refused to get dressed. His routine was thrown off a bit this morning. Not that he cares what he wears to school! There was no way that I could convince him to change, and he's just to big for me to force him. He is exerting his desire to do what he wants to do. He is VERY aware that he has CHOICE!!!!
Dear friends and family and church family,
Just wanted to ask you to pray for Jon Andrew tomorrow (Tues until Wed) as he has a 24 hr EEG done. Pray that Jon Andrew would sleep while they are hooking up the EEG machine to his little head and that the doctor would have divine wisdom in next steps for him. Neurology is more of an artform than a science because of the brain's complexity. Jonathan and I have had lots of anxiety over all the seizures lately. We don't know what God's plan for Jon Andrew's life is, but we ask that you'd pray for our willingness to surrender our will to His.
Thanks
kristy
This is not so much an update on Mason as a new connection for me. Recently I met a young mom from Alabama on Facebook who has a little boy with the same seizure disorder that Mason has. Kristy has a little boy, Jon Andrew, who is 2 1/2 with Infantile Spasms which is now progressing into Lennox Gastaut Syndrome. Exactly like Mason, only we are a number of years ahead of them. They are in a very difficult place right now, bleak, dark, seemingly no hope. We have had several opportunities to connect online, and have had a couple of long phone calls as well. I feel extremely privileged to be able to encourage her and give her hope, seeing as we are further down the SAME road. Having said that, this is the first time in 7 years that I have had someone to talk to whose child has the SAME condition. Shows how rare LGS is. I'm sure there are others around, I just haven't met them yet. Maybe I'm too shy.....
Anyway, we talked at length on the phone today and I told her how wonderful it's been to have so many people pray for Mason and us and really encouraged her to let those in her life know when and how to pray for them. I also asked her if I could pass it on to my Mason update people. So here is her email!!!
FYI: Mason has had several of these longer EEG's done and it's torture. This is what happens: we strap him down in a full body velcro kind of thing, shoulder to feet, I lay on him, trying to calm him down, as he is screaming the whole time, face beet red (one time he even had peticial hemorrhaging - tiny blood vessels bursting all over his face because he screamed so hard and so long). So for the next 1/2 hour this goes on while the EEG technician marks his head and then glues 25 - 30 leads (wires) onto his head. This happens with all EEG's. In the 24 hour ones ( or longer) he has to stay in bed for the whole time because they monitor him by video as well, and he can't be running around for that!! Never mind that he's hooked up to a head full of wires.
So knowing how hard this is, I would like to ask you to take a quick moment to pray for Jon Andrew. LGS is one of the most severe seizure disorders there are, so the road is long and hard ahead for them. Pray that God will give each of the doctors, nurses, technicians, and all others involved with this baby, HIS wisdom, HIS knowledge, HIS understanding, HIS direction, HIS peace to the family.
Thanks so much,
Shirley
by the way, Mason is doing great, other than having to go to school in his pajamas this morning, because he refused to get dressed. His routine was thrown off a bit this morning. Not that he cares what he wears to school! There was no way that I could convince him to change, and he's just to big for me to force him. He is exerting his desire to do what he wants to do. He is VERY aware that he has CHOICE!!!!
Dear friends and family and church family,
Just wanted to ask you to pray for Jon Andrew tomorrow (Tues until Wed) as he has a 24 hr EEG done. Pray that Jon Andrew would sleep while they are hooking up the EEG machine to his little head and that the doctor would have divine wisdom in next steps for him. Neurology is more of an artform than a science because of the brain's complexity. Jonathan and I have had lots of anxiety over all the seizures lately. We don't know what God's plan for Jon Andrew's life is, but we ask that you'd pray for our willingness to surrender our will to His.
Thanks
kristy
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