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Sunday, May 31, 2009

Only 10 more days :-)

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) 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.

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)

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 -


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.

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 -

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 . . . 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 - 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.