Well, Miss Abby had a totally awesome birthday! She really enjoyed being with family and having some friends come for her birthday party!
It was so cute, last night, as I was tucking her into bed she says, "Mommy, I need some time to talk." so, I sat down with her to listen. She says, "I have been doing some thinking. I am five now mommy, that makes me pretty old. I think I can go out to play by myself now and I can take bubby with me. you'll have to remind him that i am in charge. He is three and I'm five so that makes me big enough." Cracked me up!!! I didn't know 5 meant you were a grown up adult! hA!
Have a great day every one! Back to routine for us! Thanksgiving and birthday is over! :)
Monday, November 30, 2009
Friday, November 27, 2009
It's birthday time!!!
This is Abby's birthday cake for her 5th birthday. This was a bit comical to be honest! I made the cake with farm fresh eggs. The cake didn't bind like I needed it too! The frosting was falling off and then the cake split. It was to be 3 layers but the first layer split into like 8 different pieces! Not cool! However, this was the finishing product. Not my best but it's totally piped. None of the frosting was spread! So, now I pray that when I get up in the morning... the frosting has set and is ON the cake... not the tray! Miss Abby really wanted a castle, but with the miss hap's we had... I'm hoping a walk in the clouds for Cinderella and her prince will be enough to bring a smile!
Music man...
Joey is my lil music man! I was folding laundry on the living room floor the other morning and he sang me songs and played as best as he could for me! Such a beautiful sound!!!Wednesday, November 18, 2009
Raggid...
Running raggid is my life right now. I tell you, I'm wiped out! But, holding my head high and moving forward thanking God for the family I have!!
So, here is a run down...
Monday, Joey had Speech... he was doing awesome! She works so well with him.
He followed this up with Physical therapy. Man, he was a ham. Last few times he's had real low energy... um he made up for lost work! He was a fire ball hard to catch! ha!
Sis also saw the eye doc! Very exciting news there! She is growing out of her glasses! They took her script down a notch this time!! Yippy!!!
Tuesday: she ordered her glasses! Little pink frames! So cute! They look like little granny glasses but we won't tell her! LOL!
Today... Both kids had their physicals. He felt Joey was doing good but saw the regression in Abby. He sees them every 3-4 mths. just to keep up and check on their growth etc.
Abby had her occupational therapy session today to decide if she's elidgable for therapy. It was a yes hands down. her strength is poor and he said that her clumbsiness comes from not having a real idea of her body control. She is just all over the place. So, much they are going to work on.
Joey had his Therapy with OT today. He did great for her. He was so cute! They are working with getting him to accept different textures in his mouth. He hates pudding. She got just a tad on his tongue. He threw his little arms up and exclaimed "Hey, I like that!" Oh man, we were all laughing so hard! Little stinker!
Jeff is still holding on. his physical abilities have really changed. It's been hard on all of us but the hardest on him I think. We don't know much more than that yet. So please continue to pray for wisdom! Thanks all! ~Mindy
So, here is a run down...
Monday, Joey had Speech... he was doing awesome! She works so well with him.
He followed this up with Physical therapy. Man, he was a ham. Last few times he's had real low energy... um he made up for lost work! He was a fire ball hard to catch! ha!
Sis also saw the eye doc! Very exciting news there! She is growing out of her glasses! They took her script down a notch this time!! Yippy!!!
Tuesday: she ordered her glasses! Little pink frames! So cute! They look like little granny glasses but we won't tell her! LOL!
Today... Both kids had their physicals. He felt Joey was doing good but saw the regression in Abby. He sees them every 3-4 mths. just to keep up and check on their growth etc.
Abby had her occupational therapy session today to decide if she's elidgable for therapy. It was a yes hands down. her strength is poor and he said that her clumbsiness comes from not having a real idea of her body control. She is just all over the place. So, much they are going to work on.
Joey had his Therapy with OT today. He did great for her. He was so cute! They are working with getting him to accept different textures in his mouth. He hates pudding. She got just a tad on his tongue. He threw his little arms up and exclaimed "Hey, I like that!" Oh man, we were all laughing so hard! Little stinker!
Jeff is still holding on. his physical abilities have really changed. It's been hard on all of us but the hardest on him I think. We don't know much more than that yet. So please continue to pray for wisdom! Thanks all! ~Mindy
Thursday, November 12, 2009
the rest of our appointments...
Well, the kids had their appointment today with an Occupational therapist (OT). It went fairly well.
She had a lot of good ideas and things for us to work with here at home. She had a lot of good input on helping Joey with his hand control.
She said that the majority of the issue is strength. We can do all kinds of things with them but until we get his strength up, the coordination will never come easy.
she Worked with Abby for a good long while today. It was a real eye opener how weak she is. She told us that much of what she does is simply her compensating or covering up her weakness. So... she took those away and pushed her to do things correctly. Broke my heart to realize that she really does have a lot of weakness there and her endurance is little to nothing.
Needless to say, she had the recomendation to start Abby in therapy services here locally. So, we will be.
Thanks for the prayers! hugs to all of you!
She had a lot of good ideas and things for us to work with here at home. She had a lot of good input on helping Joey with his hand control.
She said that the majority of the issue is strength. We can do all kinds of things with them but until we get his strength up, the coordination will never come easy.
she Worked with Abby for a good long while today. It was a real eye opener how weak she is. She told us that much of what she does is simply her compensating or covering up her weakness. So... she took those away and pushed her to do things correctly. Broke my heart to realize that she really does have a lot of weakness there and her endurance is little to nothing.
Needless to say, she had the recomendation to start Abby in therapy services here locally. So, we will be.
Thanks for the prayers! hugs to all of you!
Wednesday, November 11, 2009
Reluctant...
It's been a week since I have written here... I think for one, I have more on my plate than I know how to manage right now... but also, I'm just reluctant to share. I don't think it's because of any specific reason except for... I don't know how to swallow life right now so it's hard to put it in writing extensively.
There is still this part of me that hopes I will wake up tomorrow and realize this isn't life but instead, it simply me living out a bad dream. But, that bad dream is here and not so easy to take right now... so push forward. One DAY at a time. Some times second by second.
Jeff had his testing done Tuesday. Started with a NCS followed by an EMG (first is nerve conduction, second is muscle). This wasn't the most pleasant test, but he survived. The doctor told him he was a super good patient! He had an MRI of his head done, also an EEG (looking for seizures) and finally, blood work. He was pretty wiped out to say the least.
We came straight onto Cincinnati from there. I'm struggling with being exhausted just because of doing all the driving and care, etc., so staying the night Tuesday and Wednesday was our only option with all the running we've been doing.
Sis had a pulmonary appointment today. We have been concerned in seeing a lot of shortness of breath in her. The Doctor spent a lot of time listening, asking questions, etc. The final point of the exam came down to the fact that Abby's shortness of breath is not related to her asthma as we had been lead to believe, but instead, it is an issue of muscle weakness. This was truly disappointing to hear! They are moving forward with a sleep study. She has a history of hypo ventilation. This is something that happens when you can't make the exchange of air and clear out all the stuff when you exhale. She wants to ensure this hasn't worsen as this is also because of weak muscles. She isn't changing the asthma meds until after the study. She did, however increase her allergy med to make sure that is covering our base line. And, is starting Abby on cortisone to treat her eczema.
I spoke with the surgeon today through the dentist office. They are backed up on surgeries. Joey was not specified as an emergency case, so they are putting him on the waiting list. Probably be after the first of the year before anything is done there. OK by me! The longer the better since he had surgery in September.
Tomorrow, we go to see an Occupational therapist at Cincinnati. She is going to be working individually with the kids. This will allow her time to see what they are capable of and what they are lagging behind in. One thing she will be working towards and looking at is to make sure we don't need any adaptive equipment right now. The Physical therapist who worked with us on the wheel chairs really thought this exam would be beneficial. So, we are walking it out.
I'm sorry if this is all overwhelming. This is why I don't want to blog or update in detail. I find it over whelming and seems there is something EVERY day right now. I do thank you for your prayers. Calls, emails and texts are meaning so much right now. I especially am a social person... so I feel like I'm in this lonely little box and those are areas that bless me and keep me moving forward! So, thank you to those who have been in touch!
Night all!
There is still this part of me that hopes I will wake up tomorrow and realize this isn't life but instead, it simply me living out a bad dream. But, that bad dream is here and not so easy to take right now... so push forward. One DAY at a time. Some times second by second.
Jeff had his testing done Tuesday. Started with a NCS followed by an EMG (first is nerve conduction, second is muscle). This wasn't the most pleasant test, but he survived. The doctor told him he was a super good patient! He had an MRI of his head done, also an EEG (looking for seizures) and finally, blood work. He was pretty wiped out to say the least.
We came straight onto Cincinnati from there. I'm struggling with being exhausted just because of doing all the driving and care, etc., so staying the night Tuesday and Wednesday was our only option with all the running we've been doing.
Sis had a pulmonary appointment today. We have been concerned in seeing a lot of shortness of breath in her. The Doctor spent a lot of time listening, asking questions, etc. The final point of the exam came down to the fact that Abby's shortness of breath is not related to her asthma as we had been lead to believe, but instead, it is an issue of muscle weakness. This was truly disappointing to hear! They are moving forward with a sleep study. She has a history of hypo ventilation. This is something that happens when you can't make the exchange of air and clear out all the stuff when you exhale. She wants to ensure this hasn't worsen as this is also because of weak muscles. She isn't changing the asthma meds until after the study. She did, however increase her allergy med to make sure that is covering our base line. And, is starting Abby on cortisone to treat her eczema.
I spoke with the surgeon today through the dentist office. They are backed up on surgeries. Joey was not specified as an emergency case, so they are putting him on the waiting list. Probably be after the first of the year before anything is done there. OK by me! The longer the better since he had surgery in September.
Tomorrow, we go to see an Occupational therapist at Cincinnati. She is going to be working individually with the kids. This will allow her time to see what they are capable of and what they are lagging behind in. One thing she will be working towards and looking at is to make sure we don't need any adaptive equipment right now. The Physical therapist who worked with us on the wheel chairs really thought this exam would be beneficial. So, we are walking it out.
I'm sorry if this is all overwhelming. This is why I don't want to blog or update in detail. I find it over whelming and seems there is something EVERY day right now. I do thank you for your prayers. Calls, emails and texts are meaning so much right now. I especially am a social person... so I feel like I'm in this lonely little box and those are areas that bless me and keep me moving forward! So, thank you to those who have been in touch!
Night all!
Thursday, November 5, 2009
Here I am...
God I sit here broken... take my life and let it be yours... May I be able to live to give you glory... May you be my strength... Show your self strong in me papa! Amen
Wednesday, November 4, 2009
another round...
Hey All!
Thanks for the continued prayers. I can't remember if I updated, but Joey is going to be having another surgery due to his dental issues. He's going to be admitted after because of anesthesia problems. Life is a blur for me right now so If that is repetative... i'm sorry!
Sissy is having some issues of zoning out on us, occasional confusion, etc. So, she will be seeing Nuero. Genetics is thinking an MRI needs to be done. I will call tomorrow to get the ball rolling.
Jeff saw his nuero today. They are at a loss at this time. They tested Jeff's memory today and found it to be not so good. So much so, The doctor called me in to explain the process of things so that we can be on the same page with medical care. At this point, Jeff's muscle "appeared" normal on exam. This doesn't present any foundation in either direction. At this point, they are going to move forward with ENG which is a nerve/muscle test. This will show them how the muscle reacts. Following that, we will go over for an MRI of his brain. He has been having more frequent migraines so much so to the point they are making him loose his peripheral vision. He has had these since he was in his 20's but have worsened. This will give them a good eye on what's going on neurologically. They are then going to do an EEG. They are concerned about seizures. You can have seizures that no one can see that can cause the memory loss, etc. So, they are taking all into consideration. on top of that, they are doing some blood work. Looking for some deficiencies, etc. After speaking with me about the kids, he began to take this a bit more serious and realized that this isn't something simple. We don't know what it is, but it is more complex than he bargained for. So... we start here and move forward. He said this presents a big challenge but we will get to the bottom of it.
Thank you for those who have been sending encouragement. We are all exhausted and spent right now.
--
~Mindy Pfohl~
Thanks for the continued prayers. I can't remember if I updated, but Joey is going to be having another surgery due to his dental issues. He's going to be admitted after because of anesthesia problems. Life is a blur for me right now so If that is repetative... i'm sorry!
Sissy is having some issues of zoning out on us, occasional confusion, etc. So, she will be seeing Nuero. Genetics is thinking an MRI needs to be done. I will call tomorrow to get the ball rolling.
Jeff saw his nuero today. They are at a loss at this time. They tested Jeff's memory today and found it to be not so good. So much so, The doctor called me in to explain the process of things so that we can be on the same page with medical care. At this point, Jeff's muscle "appeared" normal on exam. This doesn't present any foundation in either direction. At this point, they are going to move forward with ENG which is a nerve/muscle test. This will show them how the muscle reacts. Following that, we will go over for an MRI of his brain. He has been having more frequent migraines so much so to the point they are making him loose his peripheral vision. He has had these since he was in his 20's but have worsened. This will give them a good eye on what's going on neurologically. They are then going to do an EEG. They are concerned about seizures. You can have seizures that no one can see that can cause the memory loss, etc. So, they are taking all into consideration. on top of that, they are doing some blood work. Looking for some deficiencies, etc. After speaking with me about the kids, he began to take this a bit more serious and realized that this isn't something simple. We don't know what it is, but it is more complex than he bargained for. So... we start here and move forward. He said this presents a big challenge but we will get to the bottom of it.
Thank you for those who have been sending encouragement. We are all exhausted and spent right now.
--
~Mindy Pfohl~
Sunday, November 1, 2009
Getting ready...
Well, tomorrow is a big day for us in Cincinnati. The kids have three appointments. They start early. So, we have decided to leave today. Jeff has found that driving exhausts him. When we have Early morning appointments, in the past we have literally had to switch off and on to get there with cat naps. I don't do well with mornings because my kids don't sleep well at night. Some times due to pain, some times due to restlessness, and some times do to reasons I have no idea about. So... with all this being said, I'm learning I have to say when I have hit my limit. I can't make the drive safely tomorrow. So, we called up our old faithful $35 a night motel and we are crashing there tonight. It will be late tomorrow when we get home. So, I think this is for the best for every one. Jeff and the kids can rest after the drive there before the long day of appointments. Please pray for us tomorrow! Thanks! ~Mindy
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