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Wednesday, December 30, 2009

Bath time with the neck ring

This is the neck ring that we use in the tub as well as the swimming pool - it sure has come in handy while at the hotel.

Playing peek a boo - hmm is he really playing peek a boo with me?

Here he is sucking his thumb!!

Today's report on his dives

Today he ended up throwing up again while in the chambers - however he never had a seizure - so it was unexpected - but this time - I was prepared and brought a bib in with me this time - see I am getting smarter as I get older.

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.

Therapy while in Madison

Working on balance -

Pictures inside the oxygen Chamber

Here are some photos of us inside the oxygen chamber - he usually chews on thera-tubing - while inside. If we decide to do more dives after these 40 - he will probably have to get his hood fitted to fit only around his neck. It has been nice to allow him to place his hands inside - it keeps him somewhat entertained. Here is a link for the thera-tubing - we usually get it from his therapist that we see in Hudson, Wi.

A tour of a Hyperbaric Oxygen Therapy Chamber

This is a short video as to what the oxygen chambers look like on the inside and the outside.

Tuesday, December 29, 2009

A bad thing and a good thing

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

Brextin had his first seizure in the chamber today

He had his first seizure today in the chamber (during this 40 dives) - he was in the middle of a nap and out of no where a seizure occurred - his eyes popped right open and you just know that it is coming - the worst part - was that he threw up as well - and since I didn't have the bathroom sink with me inside the chamber - we had to wait it out - I just asked our technician to have towels ready for us when we came back up from our dive.

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.

Here is a list of Brextin's Christmas gifts

What does one get a child who has extreme needs for Christmas? Here are some of the items that Brextin received this year . . .

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

Chuckle Buddies - Motion Activated Rolling Laughing Dog Puppy (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) Here is a video off of you tube.

Chewable necklaces - and a bracelet.

Chewlery Soft Elephant Necklaces -

Gripper Rattle - (He really shakes this toy)

Tolo Activity Play Cube

Sunday, December 27, 2009

Back in Mad-town - hoping for success!!

We had a wonderful Christmas - it was a real fun period for me - my oldest son has been talking so highly about Santa and was very excited for the big day to arrive - we even hung a "Santa key" on our door knob - left of course cookies and milk for Santa (he actually even made the cookies) and we even left carrots for the reindeer -

However the best moments came when we introduced the book called, The 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

I made it home safely!!

I was very nervous on leaving tomorrow -due to the weather report - so I canceled our oxygen dive that was scheduled for tomorrow and drove home tonight to beat the storm and I thank the Lord that we made it home with no problem - when I left Madison around 3:00 freezing rain was falling but once I hit WI Dells the weather was fine -

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

Brex in the HBO hood

I just got these from the oxygen center - they were taken in June during our first 40 dives. He still is small enough to allow his arms and a toy to be inside the hood -

Another good day - but bad weather!

When I looked out my hotel window - it looked like a winter wonderland - but I made it to the center just fine - it stopped snowing here around 3:00 just as our second dive was ending. My dad called me today informing me of the weather report for the upcoming days - it doesn't sound good - but time will tell - I want to enjoy Christmas with my oldest son but I am also not going to risk our lives - and especially won't be able to make it if they close down the highways - we will just have to wait and see -

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

A wonderful first day of dives :-)!

We had a wonderful day - no problems - This is our schedule:

Our first dive is in the morning - then we go for one hour of therapy (either speech, physical, or occupational - since our insurance won't cover the sessions - we can only afford one hour a day) - then we both eat lunch - then we do another oxygen dive - then our day ends (however tonight - we went swimming at our hotel when we got home)

Our schedule isn't as busy as it was the last time we were here (since we did 4 hours of intensive therapy each day)- but it is still very busy - as we have more time on our hands this time - I am filling it up - by having him walk in his walker, swing on his wingbo swing, or rock back and forth in 4 point.

I am very nervous on driving back home this Thursday - a big snow storm is approaching and I can not leave until he has at least one oxygen dive. It is suppose to have a weathery mix - which consists of freezing drizzle, snow and rain. Anybody who knows me -knows I hate to drive on snowy roads - especially with a baby on board!!

Here are some photos and videos from our first therapy session.

Brextin's talking therapy parrot - his first Christmas gift

It has been a real struggle to find gifts for Brextin this holiday season - I ran across this repeating parrot and thought it might be helpful with speech - currently it has been working well - once he says something (or makes a sounds) - the parrot bird repeats it - I got the toy off of ebay and the quality of the repeat isn't always 100% but it beats me trying to repeat everything he is trying to say.

Check out this video:

Sunday, December 20, 2009

We have applied for stimulus money from Ellen DeGeneres

I applied to possibly receive some of Ellen's Big Stimulus Package money, our family sure could use some this Dough-vember :-) It would be a wonderful surprise if she was to show up during one of his oxygen dives.

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 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!

We are HERE!!

We have made the three hour trip and will begin our next 40 oxygen dives starting tomorrow - I am so anxious to try another 40 dives and are praying for success -

Thursday, December 17, 2009

Fianances - do other families struggle?

It seems as if everything we do to try to better the life of our son - seems to be expensive. As I have blogged before - Brextin is only allowed 40 sessions of physical, occupational, and speech therapy a year - and that is combined - which means he only qualifies for - 10 sessions of OT, 20 sessions of PT, and 10 sessions of ST - until we have to pay out of pocket(each therapy sessions costs us $100) - which totally disgusts me - knowing that we have a script from a doctor indicating he really needs more therapy.

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

I finally have Respite and our care worker is Awesome!!

I finally have Respite!! I have had help the past two weeks - and I really enjoy Brextin's personal care worker - she is studying on being a nurse and does a wonderful job with Brextin -

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!

Here are some new photos

Here is a photo of Brextin and Santa -
Plus here is a photo of him and his dog - it doesn't need a switch to be activated - all you need to do is touch his back and he wags his tail and barks - it really is an adorable toy.

Here is Brextin walking backwards in his new walker -

We have high hopes he will be able to walk using the walker that we are borrowing from Elijah very soon - but in the meantimewe are trying this walker - but as you can see he is already too big for it - but it has better support around his waist and I like the fact that we can set items on his tray.

Hyperbarics here we come!

We will be leaving for oxygen dives this Sunday - I am praying for good weather - we will be doing another 40 dives at the same center that we went to in June - we will also be going back to the same therapy center for his OT, ST, and PT. Since we will be paying out of pocket we will only be doing one session a day - instead of the 4 hours a day as we did over the summer.

Wish us luck!!

Saturday, December 5, 2009

Family photos - Forever Photography

Today we attempted to get photos of both of the boys as well as a family picture - I am unsure as to how it went - however, I am excited to get the proofs back - we had the same photographer who took pictures of Brextin before all of his troubles occurred - she has even posted some of his photos on-line - click here to see photos of him when he was only 2 months old - (about 5 days after these photos were taken - he was admitted to the hospital at Marshfield and all of his troubles surfaced)

Thursday, December 3, 2009

Wingbo - Brextin on his new swing

I am been hoping I could get a good video of him on his new Wingbo swing - but by the time we get a chance to use it - he is ready to go to bed - so here is a video of him - but I am hoping to get a better video of him this weekend - currently he is also struggling with another BAD head cold - the poor guy just not get a break.

The Life That's Chosen Me - this is a MUST see!!

If you have a second - I beg you to view this video/song - it is so touching - that it brought tears to my eyes - I have never been on facebook so I was glade I did not need to be a member to view it - this link was sent to me via the list serve that I belong to on Yahoo.

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.

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 -