Wednesday, December 30, 2009
The second dive was wonderful - no throwing up and no seizures -
We will be heading back home tomorrow after his two dives and his last therapy session - and then on Sunday - another one of my relatives will be taking him to his dives and therapy appointments - as I head back to work.
Once I hear anything from my relative - I will try to post - and keep everyone updated -
Thank you so much for your support - it is needed as each day seems more and more stressful as we still do not know what his future holds for himself or our family. Right now we just love him for being who he is and continue to pray for further development.
http://secure.cartsvr.net/catalogs/catalog.asp?prodid=1114128&showprevnext=1 Here is a link for the thera-tubing - we usually get it from his therapist that we see in Hudson, Wi.
Tuesday, December 29, 2009
The bad thing is that Brextin had another seizure while in the middle of the dive - (but luckily he did not throw up) The seizure lasted about 1 minute.
One thing that you need to be cautious with while doing oxygen dives are the ears - and this morning I was concerned with one of Brextin's ears - one ear has been draining more than usual and there was even a red discharge yesterday - so I was concerned that one of his ear drums had ruptured (however he wasn't showing any signs of pain) - but I had the doctor look at it and he said the ear looked like there was some puss in the ear - however it was draining properly and it shouldn't bother him during the dive - so we went ahead and did this mornings dive.
The good thing - is that today during speech - he started to suck from a straw - check out his video!! Way to go big Guy!!!
Monday, December 28, 2009
You can only imagine the mess he made in his hood- I just felt so helpless - I couldn't do anything until we were done with the dive- but the second dive went fine -
However our therapist that we saw today for Craniosacral (CS) therapy said she was able to release a lot of tension in his body and head. I just wish we had a therapist locally that performed CS - the price just is a shock to me - it costs just as much as an occupational, physical or speech session. ($90 for 60 minutes) When we see the therapists in Hudson WI - each one of them are trained for CS therapy - but they are still 60 minutes away.
Pete the talking parrot - it repeats everything that is said - it isn't crystal clear - but it is repeated in your very own voice - see video located below http://www.shopgadgetsandgizmos.com/product/3731/
Chuckle Buddies - Motion Activated Rolling Laughing Dog Puppy
http://www.amazon.com/Chuckle-Buddies-Activated-Rolling-Laughing/dp/B002SZ2Y90/ref=sr_1_1?ie=UTF8&s=toys-and-games&qid=1262043680&sr=1-1 (I found this at the mall - it is quite cute - ours will roll when there is any type of sound - such as a clap or a voice) I don't think this is the exact one - but very similiar - our rolls and then rolls the other way - (I bought this in hopes he would be able to track it with his eyes) http://www.youtube.com/watch?v=TkXeYWn4xaY Here is a video off of you tube.
Chewable necklaces - http://pacificpediatricsupply.com/cart/index.php?main_page=product_info&cPath=8_29&products_id=852 and a bracelet.
Chewlery Soft Elephant Necklaces - http://pacificpediatricsupply.com/cart/index.php?main_page=product_info&cPath=8_29&products_id=780
Gripper Rattle - http://www.amazon.com/Tolo-86280-Gripper-Rattle/dp/B00000IU35/ref=sr_1_20?ie=UTF8&s=toys-and-games&qid=1262043458&sr=8-20 (He really shakes this toy)
Tolo Activity Play Cube http://www.amazon.com/Tolo-89360-Activity-Play-Cube/dp/B00000IUBL/ref=sr_1_26?ie=UTF8&s=toys-and-games&qid=1262043458&sr=8-26
Sunday, December 27, 2009
However the best moments came when we introduced the book called, The Elf on the Shelf - http://search.barnesandnoble.com/Elf-on-the-Shelf/Carol-V-Aebersold/e/9780976990703/?itm=1&usri=elf+on+the+shelf Since I was going to be gone about 5 days before Christmas I asked my daycare provider to read the book to him and to go about hiding the elf each and every day - boy did Brayden get involved with this activity - he named the little elf - Frisbee - I picked Frisbee up when I got back from Brextin's oxygen dives (Adults can touch the elf - but once a child touches it - it looses it's magic) - and Brayden's eyes lite up knowing that Frisbee was going to spend the the next couple of days at his house - we even had to bring the elf over to Grandma's house on Christmas Eve. I highly suggest if you have a child who believes in magic - you have to check out this book - it was a ton of fun!!!
Brextin has been doing well - we did see two seizures - over the past 4 days and am hoping we won't see anymore -
I will be doing 8 more oxygen dives this week along with Craniosacral therapy and his regular therapy located here in Madison - then I will switch with another family relative who will help finish off with the rest of the 20 odd dives - while I head back to work.
We continue to pray for success for our son's development -in hopes he will move forward and improve on some of his milestones.
Wednesday, December 23, 2009
We will add one more oxygen dive on to his schedule in January -
It is comforting knowing I will be able to enjoy Christmas with my family near -
Merry Christmas everyone!!
Tuesday, December 22, 2009
The oxygen center mentioned that if Madison gets hit as hard as they claim - their center won't be open either on Thursday - they will inform me on Wednesday if they plan on being opened or not. But to me - it sounds as if Thursday will have better driving conditions than Wednesday unless the rain begins to freeze.
I hate to say it but - technology might be on our side - if all else fails and I am unable to get home - I did bring my web camera with me and I could use skype to connect with my family - the downside is that both of my family members (my mom and my husband) do not have laptops - but they do have web cameras on their desktops - so if all else fails - I could have my son open up each gift while he sits in front of the webcam - so I won't miss any memories - however I really want to enjoy helping him make a plate of cookies and milk for Santa and to leave a key on the front door for Santa as well - since don't have a chimney :0)
As for our dives - both dives went well - when I say this - it means no seizures occurred - which I am always concerned with - especially since we are still weaning him off one of his seizure meds . This Thursday - is the day that we get to remove two more topamax pills from his daily meds - He had physical therapy yesterday and speech was today.
Monday, December 21, 2009
Check out this video:
Sunday, December 20, 2009
I just watched a clip of Jenny McCarthy discussing the added benefits of oxygen treatments with Ellen via You Tube - so I know Ellen is aware of the benefits - the stimulus money could help us with payment of the treatments and possibly allow him to get his intensive therapy program that is suggested to go along with the oxygen treatments - we are unable to afford the $9,000 price tag of intensive therapy. Here is the video of Jenny and Ellen http://www.youtube.com/watch?v=mUndbmAzPqs or possibly we could even get a portable oxygen machine to use at home :-)
I am sure there are a ton of people who submit requests and I am only one of many - but we certainly can however dream!!! Happy Holidays!
Thursday, December 17, 2009
He does as well receive birth to three services - but those services cost us as well - we have a monthly pro-rated rate. The therapy sessions are starting to add up - on top of it - we are on our way to try another 40 sessions of oxygen treatments (which are not covered by insurance either) The first time we tried oxygen treatments - it cost us $4500 - this time the center has a deal for those who are returning patients - and we only have to pay $2000. Then of course since the center is located 3 hours away and it is required you do two dives a day for 4 weeks straight - we have to stay in a hotel - which is another $2500 in added costs - Money money and more money - it is all very frustrated -
Most families do not have to spend their hard earn money on therapies - they actually get to take vacations or on toys for themselves - then of course my husband kept me grounded the other day and said we will need to probably back off on some of his therapy treatments knowing a handicap van is in our future- lucky us - I just try to stay positive and continue to pray for further development - Please join me in more prayers and hope for success.
I am getting very anxious for our trip to Madison again - I will continue to post - if we are lucky enough to see any more benefits from his oxygen therapy - (the last time we did the oxygen treatments we did an intensive therapy suit program - that involved 4 hours of therapy each day - and actually our insurance paid for all $9000 of the cost - well not really - I am still waiting for a refund - and it has been over 6 months - but since my school district changed insurance companyies - there is no way that the new insurance company will cover the intensive therapy program - which totally disgusts me knowing that there proven records that most kids see added benefits with the intensive therapy program. I have fought our new insurance company and they will not budge - I truly hate the added financial problems on top of trying to raise a child with extreme needs. Peace be with us!
Tuesday, December 15, 2009
The one night that I struggle with is the night in which - my husband goes to the gym - there just isn't enough time to bath both kids, cook dinner, and feed both kids and then actually spend some time with each one and by having a personal care worker allows me to actually sit and take a breath!! I am truly in love with the fact of having an extra set of hands to help me out!
Wish us luck!!
Saturday, December 5, 2009
Thursday, December 3, 2009
Written by Karen Taylor-Good and Lisa Aschmann and performed by Karen Taylor-Good.The album "The Life That's Chosen Me" is available for organizations to use for fund raising needs. http://www.harmonizingwithhumanity.com/
FYI - I see my comments are not able to be seen or written - but when I googled the problem - I noticed others are having the same trouble and it states that this blog site is checking into the problem. Hopefully the comments will be back and up soon -