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Tuesday, July 28, 2009

Brextin standing while leaning on couch!

Here is a video of Brextin standing against a couch - his knees are not buckling and he isn't even bouncing - you have to be near by because he will just tip over - sometimes are better than others - this video is not the greatest as he does tip over and I have to catch him. I might try again later - to see if I could get a better video.

I know our Physical therapist was pleased to see this - he was not doing this before our trip to Madison - she said she knew this because she tried to have him stand before our trip but he would not perform the task.

video

Tuesday, July 21, 2009

Insurance blahs!

I am very annoyed with our new insurance company - we use to have Anthem - and our policy allowed our son to receive 30 sessions a piece of Occupational, Physical, and Speech therapy - and our school district recently changed to Group Health and now will only provide 40 sessions - combined - which means our son will only be able to get 15 sessions of PT, 15 sessions of OT, and 10 sessions of speech - that is disgusting!

When I talked to our insurance company - they responded with . . . we don't provide therapy for developmental issues - we mostly provide therapy for those who are recovering from a surgery and actually speech is NEVER provided to children - but since our son has shown aspiration in the past - they are doing a favor and are allowing us to include it into his 40 sessions.

Plus our son has out grown his foot braces and when we received a new script - our insurance company replied - we don't cover orthopedic braces either - ooh my gosh - if they look at my son's feet can clearly see that he is in need of braces to help reshape his feet and now we will have to pay out of pocket -

I just wish we would have gotten more equipment when we were with Anthem - because I bet we will struggle with Group Health to receive any help -

Wish us luck as we venture into this new change of insurance - we just switched as of July 1st and today is July 21st - so I can only imagine what is ahead for us in the future.

Friday, July 17, 2009

We will be exploring Medek Therapy

Myself, Brextin as well as my mom will be hitting the skies in August for at least one week to New Jersey so Brextin can receive Medek therapy. The therapy that he will be receiving is considered to be intensive because he will be receiving it at least two times a day.

You can find more about the therapy at http://www.medek.ca/about.htm and http://www.cuevasmedek.com/cme_def.html

I have heard some kiddos respond wonderfully to this type of therapy while others have not. If you have been following our blog you will find that I am a parent who will try anything we can to improve his quality of life. The center allows you video tape the last couple of sessions so you are able to continue the exercises at home.

We will be able to stay with family as well which will save us a ton of money - they live about 30 minutes away - and am checking to see if the train near his house will be able to take us to the therapy clinic - if not we are looking into renting a car - I am nervous about driving - but I never thought I would drive in Madison and I was able to do that - thanks to GPS navigation.

The train near my Uncle's house actually takes you to NY as well - I guess it is about a 12 minute train ride - hopefully we will feel gutsy enough to explore - I actually went to NY with my Uncle last year - and I would really love it to go back. -

Saturday, July 11, 2009

Not Giving up!

videoThis is a video of Brextin not giving up - he gets up in four point and then collapses and then gets right back up - way to go Brextin - keep up the hard work!

Hyperbaric Oxygen Therapy photos

Brextin in his hood.
This is Dave the technician. He was wonderful!

Mom and Brextin on our last day!!!


Dad and Brextin - way to go daddy!



Pictures of children museum and zoo in Madison
















More photos of Brextin and Eliza

Eliza loved the feeling of the air coming out of the fan in our hotel room. (Eliza is the daughter of Rebeccca who I met off of a list serve on the Internet with children similar to Brextin- she was a wonderful support team while being away from family and friends)
This is Brayden, Brextin and Eliza.

It was very tough to get a picture of the two together - but we did it !


Brayden watches to make sure everything is ok.



Brotherly love!!

Here is a list of improvements from oxygen and intentsive therapy

Since I have been back of course everyone wants to know if we are seeing improvements - these are some of the things we are seeing:

When I hold him - his legs are no longer limp - he pulls them up - so it feels as if he is crawling up my side.

His grasp has gotten tighter - when he grabs my shirt or my finger - it is a lot tighter than in the past. He actually grabbed my hair and glasses yesterday. (so he is grabbing more things)

He is crawling backwards (army style - but he does get up on four point in-between his pushes) (he did do this sorta - about one year ago but we lost it - and now it is back) (this has just started - Thursday night)

He can chew - we are able to place food into his mouth and he is able to move the food around with his tongue and smack his lips together.

He is louder and more vocal - he is beginning to make some new sounds -

He can get up on four point and hold his head a lot taller than he was able to before

When we walk him - we use to hold onto his fingers and when we lifted his right hand up - his right foot would come up (we were doing the weight shifting for him) and now we actually hold him in the middle around his waist and he will lift and move his foot forward himself - we are working on this with his gait trainer (from Elijah) and doing it ourselves.

He smiles more often - and at times I think he is getting his own personality.

Our Mayo appointments.

It is nice to be back home - we had appointments at Mayo yesterday and I must say I do have some favorite doctors and some I would rather not have to see. I think all doctors should rent a child with extreme needs for one week to put themselves in our shoes. Some of the doctors that we see with our son Brextin have no bedside manner - they do not think before they speak or do not focus on the positive. This is how our day went yesterday.

We saw an eye doctor - first off we saw this lady who did some tracking exercises - with this strange toy - I was amazed that he was watching it and actually reaching for it - she had very little to say - she was very unsociable - then we got sent to a waiting room - where we waited for at least 45 minutes then we got to see the eye doctor. He talked to us a little bit and turned on some remote control animals that were attached to the wall - in hopes that Brextin would look and be interested - I was amazed - he actually looked - only for a couple of seconds - but he still looked - the doctor thought he didn't look longer because of his place in his development (which is delayed) - he wanted to do a better exam so he placed drops in his eyes and sent us back to the waiting room. We sat there for another 25 minutes - we then went back into the room where he checked his eyes - he mentioned to us he thinks that the glasses that Brextin is wearing is to strong and are useless to even wear (we actually got the glasses from a Dr. in Hudson WI) He strongly advised us not to even put glasses on him - because nothing would be able to improve his vision - he told us he was legally blind and that was it. I had asked if we could get a vision therapy script and he strongly is against vision therapy - which just irks me - it is a proven fact that vision therapy does improve with children with CVI - which Brextin has - he claims he is unable to really do much for Brex until he is able to tell him what he can and not see - well well well - why is it that I often see other special children wearing glasses - not all special children are capable of communicating to eye doctors what they can and can not see -

This is the exact reason why I sought out the eye doctor in Hudson WI -I need a doctor with my best interest for my son's eyes - I strongly feel we need to teach Brextin how to use the eye vision that he currently does have and strongly encourage vision therapy -

So we moved onto the second visit - which was a hearing test - he just woke up for a nap which meant he wasn't all that alert - we were placed in a sound proof room - where a lady said his name from a speaker in the wall - in hopes that Brextin would turn to the sound - then she tired a different speaker on the opposite wall - needless to say - Brextin just sat on my lap - unamused. She then looked into his ears to check on his tubes - she said he had 1.5 hearing in one ear and 1.7 in the other ear - I myself - really am unsure what that even means -

We would return to this appointment to see the ear doctor later in the day - we then went to the doctor to help with his foot braces - he is a therapy Doctor - he of course started out asking us silly questions - can you son wave? can your son dress himself? when of course all he needed to do was look at his chart and know that our son is severely delayed - he then luckily went to focus on the real reason why were there - which was for the braces -currently Brextin wears braces that go up his calf and he doesn't believe that is really necessary - so he wrote a script to get new braces - plus he feels as if the current ones are not tight enough and are actually not doing what they are suppose to be doing. I need to fax the script to our insurance company in hopes they will cover the braces.

We then headed to see his neuro doctor - I really like this doctor - he always focuses on what he is doing - and not on what he isn't - the fact is - Brextin is improving - just on his own schedule and not ours. The main reason why we visited with this doctor was to see if he would lessen the amount of seizures meds - and I am proud to say - he agreed - we are able to give him 25mg less each day for two weeks and then will contact him again about going further or if we need to go back up - it all depends on if Brextin has an increase in seizures - I really do not like the drug Topamax - many doctors call it Dopamax - because it places the children into a daze - He was able to write another script promoting therapy 3 times a week for 60 minute sessions - they might be needed since we switched insurance companies as of the first of July -

Switching insurance companies is a whole another blog - our son was getting 30 sessions of OT, PT, and ST a piece and now the new company - Group Health will only give us 40 sessions combined and they actually do not offer speech at my son's age - but at this time they claim they are working things out and I am crossing my fingers that my son will continue to get his needed therapy.

We then headed back to the ear/nose/throat doctor - she looked at his tubes and said everything looks great - since he is beginning to snore - she was concerned on his tonsils - but at this time they do not look enlarged - however she wants to continue to check his progress so we will see her again in October.

Our appointments finally ended around 5:00 and we headed for pizza in Nelson at the Stone Barn.

Tuesday, July 7, 2009

We are heading home!!

I am happy and sad - I will miss the wonderful gals at the Communication Innovations therapy center - they made us feel so welcomed and they worked so hard with Brextin (they even created a home exercise packet with pictures so we can continue some of the exercises at home - YEA!!) - but am excited about being surrounded by family and friends as well -

Since we have had at least 40 sessions of treatments at the WI hyperbaric oxygen center - we are eligible of getting 40 more sessions at anytime for only $2000 - so over the next 6 months we will be discussing as a family if we think the sessions have been a success - I as a parent know that something is working - either it is the oxygen, the intensive therapy or both combined.

Today while at therapy he reached for a toy in front of him while sitting on his own - which is new for him - he would have reached for a toy in his high chair because of his support around him - but since he was sitting solo - I was amazed that he reached forward with encouragement.

Yesterday at the oxygen center we met an adorable 2 1/2 year old boy who also suffers from epilepsy - whose name is Cainan. Please add him to your prayers as he ventures into oxygen treatments and prays for success - he truly is an adorable boy!

They often say that the oxygen that he has received will stay within his system up until 6 months or so - which means he can continue to see improvements - I will do my best at updating his blog - as much as I can - however since I will be back home with my oldest son and living a busy lifestyle it will be limited -

Please continue to pray for our son in his development, health, as well as for strength - we are forever blessed to have such an adorable hard working son!

We will be back at Rochester Mayo for at least 4 doctor visits - they are just routine check ups - one is for hearing - one is for braces for his feet - and one is for his seizure medication - I am hoping to decrease his dosage of topamax - but since he is still having seizures - this probably won't be a possibility - but the drug carries so many bad side effects that I am hoping to wean him off of it and try a different drug with less side effects.

Again thank you to all of you who follow his blog and his progress - I truly enjoy knowing that so many people care about him - if you were to look at the very bottom of this page you will see a counter - I just began to make this blog a couple of months ago and to see that high number - excites me!!

Thank you thank you thank you - to everyone who has helped us financially to receive oxygen treatments, therapy sessions, and especially the equipment that will be needed to continue the therapy exercises at home - your love and support is highly appreciated!

Monday, July 6, 2009

We had another set back (he had a seizure)

Today was going good- Andy did his first dive and then we went back to the hotel for some lunch and then went to his two hour therapy session - he had speech first and then had Occupation therapy - however he hasn't been the same today - it has been an off day -

During speech he wasn't that into chewing or swallowing or even getting his tongue out - during occupational therapy he appeared tired - after his therapy sessions we walked back to the hotel and I tried to feed him one quick time - because I know him all to well that he will fall asleep on the way to the oxygen therapy center and I won't be able to feed him until his two hours of therapy are done which is around 6 pm- but I was only able to get 1/2 of a jar of food in him when he fell asleep.

As we were driving to the oxygen center - Andy asked me if Brextin was locked up and having a seizure - as I looked at him in his car seat - he was in fact in the middle of having a seizure - I then jumped into the back seat and calmed him down and the seizure passed - he did not throw up which was a plus - but of course it caused Andy and myself into a fight.

I am uncertain if anybody can understand the toll it takes on a relationship to have a special child - myself - I have been on a high cloud proud of seeing him improve in certain areas - and now this has brought me back to reality - he may never live a normalcy of a life - we will always be living in fear of when his next seizure will occur.

Andy did admit that he to has seen some improvements lately - but believes it is mostly due to the therapy end and not the oxygen end - I myself think it is because they are being paired as of right now -

Who knows - Andy is currently in the chambers right now and I am praying that everything will be ok - and no more seizures will occur - I just wish he could enjoy life without it being interrupted with these terrible seizures and delays - why is it our precious boy? why why why - I just want to be able to enjoy him crawling, walking, grabbing or wanting me, or having a tantrum or even fighting with his brother -I guess as of right reality needs to set in and need to remind myself they are mostly dreams and may nerve occur.

Andy did a dive!

I left my camera down in the van - but will post pictures later - of course he fell asleep in record time - Brextin slept as well - which is always nice so he can rest up for his two hours of therapy that occur soon after his dive.

We went to the children's museum yesterday and ate at a near by Italian restaurant - It sure has been nice to eat food that isn't frozen - I will be heading home tomorrow for good after his last therapy session tomorrow which is 6:00 p.m.

I can not thank the people enough who have allowed us to try this type of therapy - my heart goes out to each one of you for your love and support!

I think I am seeing progress - even yesterday while we eating at the Italian place - he was sitting in a high chair and was exploring the table in front of him - which is very seldom done and grabbing things toward him - he will explore toys at home on his high chair but those toys are colorful and are entertaining - this time he was grabbing the white table cloth, the white napkin, etc - it appeared as if he was exploring.

When I asked Andy what he thought about his oxygen dive - his response was - it is bigger in the chamber than one would think - and that I had to swallow a ton to help relieve the pressure in my ears - but it wasn't bad - I got a good nap in - actually it was the deepest that I have slept in a long time.

Saturday, July 4, 2009

He got RELIEF!!

I have been feeding Brextin power pudding - which is prunes, apple sauce, prune juice and wheat bran for the past couple of days - we have also tried: a suppository, polyethylene Glycol - and he has finally produced!! yippie we can rest now - it has almost been one week since he has had a stool - we were beginning to worry!!

We went to the free zoo today in Madison and we just got back from the hotel pool - it sure is nice to be surrounded by family - our friend Rebecca and Eliza went back home today as well - we sure hope to stay in touch - it is amazing how strangers can become friends in such a short period of time.

Tomorrow we plan on going to the children's museum and then explore State Street - but since it is Sunday I am unsure how many businesses will actually be open.

Thursday, July 2, 2009

Brextin's therapy slideshow

http://www.flickr.com/photos/40068275@N02/show/

I have been trying to add a slideshow of Brextin's time while in Madison - and have been having troubles - but if you click on the link above - I think it will work -

Photo of Brextin sleeping in the chamber-


Photo was taken from outside - as the technician opened up the chamber.

A good day.

A good day - we just got home and plan on taking him swimming - he is doing great with a schedule - I wake him up around 6:00 and then he has been sleeping during his first dive at 8:30 - and waking up around a little after 11:00 which allows me time to attempt to feed him (I am still struggling with this - he just doesn't want to swallow - he has been holding the fluids in his mouth) then he is awake for the two hours of therapy- usually Physical (PT) or Occupational therapy (OT) - then he falls asleep on the way to his second dive - which is at 2:30 then he sleeps while in the chambers and then awakes as we are coming up from the dive - I quickly attempt to feed him again - and then he remains awake for his additional hour of either PT or OT then he has one hour of Speech therapy - then often he comes home and takes another nap - I then feed him supper - he is up for about 1 to 2 more hours and then goes back to sleep - he has been waking up due to constipation - I did purchase some prunes and prune juice and am hoping that will help kick start his stools.

He has been walking again with a gait trainer - however if I am unable to take home at least 2 therapist with me - it will be a struggle - we have been walking him in a gait trainer that they have on loan at the therapy center - but tonight I requested he practices with the gait trainer we are borrowing from Elijah since that is the one we have in our possession when we go home -

Good news with our new insurance - as of the first of July we switched to Group Health - at first the Special Children center contacted me and told me they would only cover 6 sessions and then we would need to get a prior-authorization - which makes me nervous -

However . . . at Communication Innovations - where we are getting the intensive therapy at - has told me that I will only need to pay 10% out of my pocket - which is a blessing - the therapy has cost our family $9,000 and we had to pay it up-front - (Since we were with Anthem up until July 1st - I also need to wait for reimbursement - which will take a long time - since we finally got reimbursed for the helicopter ride that he had to take back in October)

I just hope the switch to the new insurance company will be a good transition. Andy has said he will be coming up to visit with Brayden tomorrow and staying until Monday evening - I am expected to be home next Tuesday -

It has been a long - yet short 4 weeks - and I sure hope for improvements on our son - I really believe he has been more active.

Here is a video of him working on standing.
video

Here are some photos that were taken last night at the hotel














These pictures were taken last night as we were getting ready to go to bed - he is getting his tongue outside of his mouth and is beginning to suck on his fingers - he sucks pretty loudly - it has been amazing - I just wish he would begin to want to eat especially liquids.

Thank you cousin Andrea and Rebecca


I had a wonderful time last night - my cousin and I enjoyed a wonderful hamburger at the Great Dane restaurant and then we went to the West side mall for a relaxing evening - it was really nice to get out of the hotel and therapy centers.


Then after we finished eating - I went back to pick up Brextin - (the restaurant is only 1/2 block away from his therapy center) and I was surprised with flowers from Eliza's mom - so it was a better up-lifting day yesterday - (Isn't my vase beautiful!) The cards are from members of the Cornerstone Church in Elk Mound - I really truly enjoy knowing that caring people are praying for our son)


However, I am still having troubles feeding Brextin - he is really backed up - he had two really nice messy diapers on Sunday and on Monday - but he has not had any movement since then. I did place a suppository in his little tush last night - and usually they work within 30 minutes - but nothing has happened - he even whined last night - and now this morning he won't take ANY liquids - which is concerning me.

Wednesday, July 1, 2009

Neck ring for babies

I have had a ton of inquires about the neck ring - I made this video a while back (March 2009)- in regards to buying one off of ebay or buying one from www.waterwaybabies.com as you can see Brextin was not as active as he is currently - I just posted one the other day and you can see how much more active he is after receiving oxygen treatments.
video