Only ten more days until we hit the road for therapy - I am so excited!!
We have been seeing more seizures - he had three yesterday and one the day before during his body massage - they are not lasting that long - I think about 45 to 60 seconds - his body just locks up and freezes - (he turns pink and his mouth starts to tremble) When we see the seizures occur there really isn't anything we can do - I just hold him tight and reassure him that we are here and that everything is going to be OK -
We haven't seen any seizures for awhile - so this saddens me - but we will push forward and continue to pray that he will conquer the seizures and delays.
We just purchased a ton of therapy items to help with oral motor skills (z-vibe and attachments)- (Ark Therapeutic) https://ssl202.chi.us.securedata.net/~arktherapeutic/Merchant2/merchant.mvc?Screen=SFNT&Store_Code=ATSI This is one of the companies that we purchased the items from - boy were they helpful - they even suggested a drinking cup for him - and currently he has even began to suck a little through a straw - it has been amazing. The Cip Kup is the name of the new cup - it sure beats feeding him by a syringe.
Infantile Spasms - infant epilepsy - Microcephaly (Brextin became our guardian angel in May 2010)
Sunday, May 31, 2009
Monday, May 25, 2009
The count down has begun for HBO
Only 16 more days remain until we seek Hyperbaric Oxygen therapy along with therasuit training - Brextin is fighting a terrible cold and I am hoping he will get over it soon - I am uncertain if he will be allowed to do the Oxygen therapy treatments if he has a head cold-
I have not heard back from our insurance company in regards to his $10,000 helicopter ride back in October - we were able to obtain records from the ER - and I have faxed the papers to the insurance company - and now I just found out that our school district is thinking about changing our insurance company - due to a 20% increase in our cost.
I feel so bad for our district - because our son is probably the reason due to the increase - I sure wish we were not in the boat that we are "medically" - but I am grateful for our loving son and I am forever grateful for the insurance that we have for our son - and truly enjoy working for the school district that I work for. Since birth our son has incurred over $300,000 in medical costs - It is amazing how much medical costs - are these days
I just heard word from a list serve that I belong to from yahoo groups that there will be another family who will be doing HBO at the same center at the exact same time - so I am anxious to meet her and her daughter (talking with other parents who can relate have been a god sent to me)
I have not heard back from our insurance company in regards to his $10,000 helicopter ride back in October - we were able to obtain records from the ER - and I have faxed the papers to the insurance company - and now I just found out that our school district is thinking about changing our insurance company - due to a 20% increase in our cost.
I feel so bad for our district - because our son is probably the reason due to the increase - I sure wish we were not in the boat that we are "medically" - but I am grateful for our loving son and I am forever grateful for the insurance that we have for our son - and truly enjoy working for the school district that I work for. Since birth our son has incurred over $300,000 in medical costs - It is amazing how much medical costs - are these days
I just heard word from a list serve that I belong to from yahoo groups that there will be another family who will be doing HBO at the same center at the exact same time - so I am anxious to meet her and her daughter (talking with other parents who can relate have been a god sent to me)
Wednesday, May 13, 2009
Happy Birthday Brextin!!
Brextin turns 2 today!!
The school year is coming to an end - so this evening was the class of 2009 awards ceremony - and each and every the student organization that I advise hands out a scholarship - but this time it was different - before I presented the deserving student her award - our school counselor did a shout out for Brextin - and shared with the crowd that it was his 2nd birthday - of course Brextin was sleeping - but it sure was a nice birthday surprise.
We have had many ups and downs these past two years - but our son sure is adorable and we sure do love him a ton -
HAPPY BIRTHDAY Brextin!!!
I am still working on getting the insurance figured out - Andy will be going over to the hospital tomorrow to pick up some report papers and then I will be faxing them into our insurance company - - I sure do hope everything turns out.
The school year is coming to an end - so this evening was the class of 2009 awards ceremony - and each and every the student organization that I advise hands out a scholarship - but this time it was different - before I presented the deserving student her award - our school counselor did a shout out for Brextin - and shared with the crowd that it was his 2nd birthday - of course Brextin was sleeping - but it sure was a nice birthday surprise.
We have had many ups and downs these past two years - but our son sure is adorable and we sure do love him a ton -
HAPPY BIRTHDAY Brextin!!!
I am still working on getting the insurance figured out - Andy will be going over to the hospital tomorrow to pick up some report papers and then I will be faxing them into our insurance company - - I sure do hope everything turns out.
Monday, May 11, 2009
Denied again!!
I just got a second notice for a $10,000 bill from our insurance company in regards to his Oct 31st helicopter ride - - they claimed they do not have a letter indicating it was medical necessity - do they really think that I just allowed my son to take a luxury trip to Rochester Mayo??? Now I have to contact his neuro doctor at Rochester and hope he will write a letter indicating it was medical necessity - however he wasn't the doctor who made the decision -
Our local hospital ER department made the decision - they stated that they do not work with pediatrics who have seizures and said it was best to have him air lifted to Mayo and now I have to sit and do battle over the bill - wish me luck - I just sent an email to his doctor at Mayo and am hoping for a reply -
Nobody has any idea - the battles that we as special parents have to go through with our children - please pray for additional strength.
Our local hospital ER department made the decision - they stated that they do not work with pediatrics who have seizures and said it was best to have him air lifted to Mayo and now I have to sit and do battle over the bill - wish me luck - I just sent an email to his doctor at Mayo and am hoping for a reply -
Nobody has any idea - the battles that we as special parents have to go through with our children - please pray for additional strength.
Sunday, May 10, 2009
Happy Mother's Day!!
You may or may not know - but Brextin was actually born on Mother's Day - his birthday this year will be on Wednesday - the 13th - he will be TWO - it has been an amazing two years - having many ups and downs -
I myself have not been feeling all that well - and plan to go to the doctor soon - I am thinking it is due to stress and thinking too much about his up coming therapy sessions in Madison - Our first session will be one month away - it will take place on June 10th and I am getting very very anxious!!
I haven't been able to buy a ton of toys for Brextin for his birthday since he is unable to use many of them - but I did buy a Fisher Price sing and stage - every time he strikes a button (kinda like the switch -that his speech therapist has been using) a song is played and there is a mirror that he can look at - and lights begin to flash as songs are being played - I am hoping he is able to hit the button to activate the songs - http://www.amazon.com/gp/product/B000NW2AVC
I am very excited for the gardening season to begin - it a wonderful way for me to have an outlet - I love getting my hands in the dirt and to see the results throughout the Summer.
We are on our way to enjoy a Mother's day brunch with my wonderful mother and grand-mothers - hope your day will be enjoyable!
I myself have not been feeling all that well - and plan to go to the doctor soon - I am thinking it is due to stress and thinking too much about his up coming therapy sessions in Madison - Our first session will be one month away - it will take place on June 10th and I am getting very very anxious!!
I haven't been able to buy a ton of toys for Brextin for his birthday since he is unable to use many of them - but I did buy a Fisher Price sing and stage - every time he strikes a button (kinda like the switch -that his speech therapist has been using) a song is played and there is a mirror that he can look at - and lights begin to flash as songs are being played - I am hoping he is able to hit the button to activate the songs - http://www.amazon.com/gp/product/B000NW2AVC
I am very excited for the gardening season to begin - it a wonderful way for me to have an outlet - I love getting my hands in the dirt and to see the results throughout the Summer.
We are on our way to enjoy a Mother's day brunch with my wonderful mother and grand-mothers - hope your day will be enjoyable!
Sunday, May 3, 2009
Only 5 more weeks until we try Hperbaric Oxygen Therapy
I am so excited - we are getting closer to our trip to Madison - only 5 more weeks until we hit the road
-Please keep praying for success -
The main reason why we are seeking Hyperbaric Oxygen Therapy is because of an adorable boy named Elijah - you can read more about him at . . .http://elijahland.com/ He has seen wonderful improvements due to HBO along with different supplements.
I just loaded a web camera to our lap top so - I will be able to keep in touch with my oldest son while I am 3 1/2 hours away - I am hoping that my husband will be able to figure out how to accept the call - and how to operate the camera
I have hopes of loading a camera onto my mother's computer as well -
-Please keep praying for success -
The main reason why we are seeking Hyperbaric Oxygen Therapy is because of an adorable boy named Elijah - you can read more about him at . . .http://elijahland.com/ He has seen wonderful improvements due to HBO along with different supplements.
I just loaded a web camera to our lap top so - I will be able to keep in touch with my oldest son while I am 3 1/2 hours away - I am hoping that my husband will be able to figure out how to accept the call - and how to operate the camera
I have hopes of loading a camera onto my mother's computer as well -
Saturday, May 2, 2009
We had another scare
On Thursday night - I was jumping Brextin in his Merry Muscles http://www.babyloveproducts.com/merrymuscles.html - when all of a sudden he fell to the ground - the jumper's bungee cord ripped in half - luckily he has a trampoline under him - which helped a ton - he was startled - but appeared to be fine - I contacted the company right away - and they called me back 10 minutes after I sent my email - The company is in Canada - and the jumper is designed by an OT Occupational Therapist - they have asked me to send them back the broken jumper so they can analyze the damage - so they can hopefully prevent future incidents -
I am torn between getting a new one and not ever using it again (I still have nightmares of seeing him fall)- Brextin did use the jumper for one year before anything ever happened - but he truly loves to bounce - if you were to check his older post you could check out a video of him jumping and using the merry muscles - He appears to be a different kid while he is in the jumper - he smiles and giggles, and is very very active - which helps him to strengthen his muscles - but I grantee that I will never leave him alone while jumping and will always inspect the device before he is allowed to jump - I know that I am going to be very cautious each and every time we use it - I advise all parents who use a merry muscle jumper - always inspect the device before you place your child in it.
I am torn between getting a new one and not ever using it again (I still have nightmares of seeing him fall)- Brextin did use the jumper for one year before anything ever happened - but he truly loves to bounce - if you were to check his older post you could check out a video of him jumping and using the merry muscles - He appears to be a different kid while he is in the jumper - he smiles and giggles, and is very very active - which helps him to strengthen his muscles - but I grantee that I will never leave him alone while jumping and will always inspect the device before he is allowed to jump - I know that I am going to be very cautious each and every time we use it - I advise all parents who use a merry muscle jumper - always inspect the device before you place your child in it.