Search Brextin's Blog (type in Medek, Oxygen therapy (HBO), Wingbo, neck ring,G-tube, etc)

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 -

Friday, November 27, 2009

Medications - being decreased

We discussed weaning Brextin off of Topamax - which we started yesterday - this is our schedule to begin to decrease his medication:

* 50 mg of topamax in the morning - and 75 mg at night (.4ml of Keppra twice a day) for two weeks & 1000mg Vigabatrin
* 50 mg of topamax in the morning and 50 mg at night (.6 ml of Keppra twice a day) for two weeks & 1000mg Vigabatrin
* 25 mg of topamax in the morning and 25mg at night (.6ml of Keppra twice a day) for two weeks & 1000mg Vigabatrin
* (No more topamax) and .6ml of Keppra twice a day & 1000mg Vigabatrin
* If we see success our Dr. plans on beginning to wean him off of vigabatrin as well -

His plans are to fully control his seizures with only one seizure medicine which would be Keppra - I am so excited to attempt to remove medication from his system in hopes it might be hindering his learning - only time will tell.

We have been blessed with great news!!

I have nothing but good news to report in regards to Brextin's MRI - our Dr. indicated that today was a day of good news - I don't think I ever have heard him say that (I am so relieved to hear this) - he stated that there appeared to be nothing wrong with his brain appearance - in the past his MRI's have shown some extra fluid surrounding his brain - and currently the fluid looks to have improved which is a huge plus. Plus his white matter myelin appears to be getting thicker - this is needed in order to send messages to the learning part of the brain - which is another big plus.

All in all - he stated that today was a day of good news and that everything looked positive - however it appears as if Brextin is progressing on his own schedule - and not on the "normal" progressive schedule - but the good news is that he hasn't regressed and he does continue to work hard to move forward - thank you Lord for our prayers have been answered!!!

We could not have asked for better news! Praise the Lord - Amen!!!

Thursday, November 26, 2009

Happy Thanksgiving!!!

We would like to wish everyone a very happy full filling Thanksgiving!!

Today was the first day that we have begun to wean Brextin off of Topamax - he is getting one less pill of sprinkles a day (50mg in the morning and 75 mg at night) - and have moved his Keppra seizure drug up from .2ml to .4 ml.

Tomorrow is the day of the MRI - my mom and dad will be joining me tomorrow for support instead of our wonderful daycare provider - since my mom is still recovering from a total knee replacement - I was unsure if she would be willing to come - but since my dad will be joining us - he will be able to push her in a wheelchair while we venture onto our appointments - I am hoping Brextin will sleep right through the MRI so we won't have to sedate him.

I am still fighting the cold - I was put on a 5 day anti-biotic but the side effects have been to strong for me that I do not think I will be continuing the doses - last night my whole arm fell asleep, my heart began to race, I got severe stomach cramps, and I began to get real dizzy. I just wonder if my son ever experiences some of these unpleasant side effects due to his many medications that he has been on throughout his life. I have found it to be quite scary not having total control over your body due to medications.

Please continue to have our son in your prayers as we have his MRI procedure tomorrow as well as the results.

Again hope everyone has had an enjoyable holiday - and we are very thankful for our family and friends.

Monday, November 23, 2009

The Wingbo has arrived!!!

His Wingbo arrived today - but it was 8:30 pm by the time we put it together - and so he was only able to swing for a couple of minutes before my husband told me to put it away - luckily we will be on vacation this week so he will be able to enjoy it more - later this week - once I get it adjusted to fit him - I will take a video of him and post it - I am so excited for this swing - even our birth to three therapist is thinking of buying one for their department - Here is their website I just could not justify the $219.00 not knowing if the swing would be beneficial to him so I was so excited to find a honest seller on Craig's List for only $60.00. Thank you thank you thank you to Kathy!

Saturday, November 21, 2009

YUCK colds!!

I am worn down by the biggest cold!! It started out with a dry throat then I began to loose my voice - then a cough started - and now lovely mucus has moved in - it has been a very rough week - I even took a day off of work - which I never do because I have to use all of my sick days for my son's appointments - The worst thing is - that Brextin has the same cold - we took him to the doctor but they told us we have to let it take its course - he and I keep waking up in the middle of the night just coughing and coughing and coughing - and with Andy hunting - it has even tougher to stay strong -

I am hoping that Brextin gets healthy soon - because he is scheduled to get a MRI next Friday - (the reason why this is scheduled - is because our neuro doctor thinks something has structurally changed in his brain and wants it confirmed - his last MRI was done when he was around 4 months old at the start of all of his health issues) which happens to be a vacation day for me - I am praying for no scary news - I am debating if I take a handicap service van to Mayo or I go with my day care provider - who has been a HUGE support system for us - I do know that I am in no means ready to do it alone - in case there will be bad news. Andy had asked me to postpone it since he will be hunting but he too has missed a ton of work due to Brextin's many doctor appointments - so I think it is best that I complete this appointment on a vacation day.

Please pray for our son as he receives a MRI on the day after Thanksgiving - and help prove our neuro doctor wrong and that everything has remained the same and everything is going to be ok - as he pushes forward to further success on his development.

Monday, November 9, 2009

Here are some great photos of Brextin eating!

Brextin has begun to grab the spoon as we try to feed him - or often he decides to place his fingers into his mouth while it is filled with food and then we end up with food everywhere - in this photo Brextin was eating the pureed meat dinner - which ended up all over his face.
In the other photo - Dad decided to try to feed him noodles and I was quite impressed on how well he played with them and then placed them into his mouth - he didn't end up eating a ton of them - but it was nice to see him play with his food - I thought I would never say that.
ooh ya - how do you like his new hair cut - it is the shortest we have ever had it - I miss his curls on the top - however they should grow back shortly.

Here is a video of him with the noodles . . .

Sunday, November 8, 2009

Can you believe it - I finally had a day to myself!

Can you believe it - I had a whole day to myself- my husband was up at the hospital with Brextin doing a 24 hour EEG and my Mother-N-Law took my oldest - I was pondering to myself - what am I going to do with 24 hours to myself -

(These days only happen about once a year - since very few people are willing to watch Brextin - especially over night)

I began to make my list early on in the week - I was going to go to my favorite Mexican place in town and order take out, then I was going to go to the local movie store and get - The Proposal - and then I was going to head back home to lay on the couch with our Daschund and just relax - and not wake up until my hear t desired - however my dream did not come true -

I got the flu - that is right - the lousy flu- (It all started with the chills at work on Friday- I could not get warm enough and then I noticed I couldn't go far away from any bathroom) I have been tied up at home for the whole weekend!! And it totally sticks!! I did not even get out of bed until around noon - it has just worn me out!

Hunting time is right around the corner which means I will need to pull double duty on the weekends. So I was really looking forward to this weekend off - I feel so miserable that I am hoping that I am able to go to work tomorrow. UURRG why now - I am only hoping that Brextin doesn't get what I got - or daddy will be doing diaper duty all day and all night long :-)

The good news is that I did just find out we do qualify for respite care (about 5 hours a week) - now I only need to find the time to interview the candidates. There are about 5 people interested in working with our son. I plan on taking baby steps - I find it very tough to leave him in the hands of anyone else other than myself, our wonderful daycare provider, or one of our parents.


Anyone with a special child knows that you have to have some type of agreement when you are married in order to continue to have things run some what normal. Well during the school year my husband usually does the doctor appointments and during the Summer I do the doctor appointments - unless my son is being sedated - then I do take the time off and attend them as well. It can be tough only having so many sick days and trying to make sure you don't use all of them on your son's doctor appointments.

When my husband goes - I always request to be on speaker phone while the doctor is present to make sure there is no communication lost in-between the translation. When the doctor came in on Saturday I was pleased to be included in the conversation - however when he brought home the dismissal papers I noticed that dad had mentioned a couple of things to the doctor.

Before I mention these items - I need to remind myself - these are only words on paper - but I get so upset - because I have been so please with the improvements that I have been seeing with my son.

The papers read . . . Dad claims child in unable to hold head up (are you serious - he has no problem with this)

Dad claims he needs assistance while sitting (really - at times he does tip - over - but not all that often)

Dad claims there is no improvement since the last time the doctor has seen him (are you nuts - your son just started to scoot his knees forward while on tummy time, he has started to eat orally again, he is starting to get his tongue further and further out, he has been able to bounce up and down while on his knees - as he sits in-between our legs) These are the reasons why I would rather go to the appointments - I often think that my husband is blinded at times with our son's development - until my son can walk, jump, talk and run - my son is not improving.

When I confronted my husband to the discharge papers and their comments - he stated don't let their comments get to you - they are only words - and yes they are only words - but don't you think your son has improved lately - and he had agreed - he has improved -

I am sure other parents can relate - I just needed to vent my frustrations on reading my son's discharge papers from Saturday.

My husband did mentioned the our doctor's intern did have a chance to look at Brextin's blog and she commented on how useful it was to her - hopefully with her looking at it - she will get a better understanding at what our son is capable of doing.

I must mention I do love my husband very much and he is a great daddy - this was just an entry to my son's blog that I needed to write to allow myself to vent out my frustrations on what was written in the discharge papers from the hospital.

Saturday, November 7, 2009

Keppra here we come!!

Brextin just got a 24 hour EEG done at Rochester Mayo and his EEG showed no background activity which is great - however he did have some electronic seizures - that appeared on his left brain lobe - (these seizures were not physically seen - we only knew they were occurring because of the EEG report) the Dr. is concerned that something has changed in his brain structurally - and so he has asked us to schedule another MRI in the next month or so - just to be safe.

Because of the improvements on his EEG he is willing to wean him off the drug known as topamax and then gradually begin him on Keppra - I have heard from others that Keppra can be a wonderful drug however it comes with is well known side effects as well. Here is a link to the well known side effects - there are a ton of side effects - which concerns me as well.

OOOh how I wish our son would be able to live a healthy happy normal life without any seizures and especially without any drugs!!

Tuesday, November 3, 2009

Brextin is trying to crawl - and so we think!!

Here is a video of Brextin moving forward while crawling - to some parent's it isn't much - but it is HUGE gains for our son - we are very excited in seeing this new improvement!!
Way to go Brextin!!! Go Go Go!!!

Saturday, October 31, 2009

Halloween - what a Holiday!

Brextin was drawn to his brother's shiny knight costume. He kept reaching for his outfit.

These are the days I get a little down - I see my oldest son gleam ear to ear with the excitement of going door to door to get treats - yet I look at my youngest - and understand he may never get to enjoy that feeling - and I will never be able to see him understand the concept of the holiday. As I hear the door bell ring I am forced to open the door to look at little ones who are similar in age - holding their bucket - trying to say "trick or treat" yet my little guy is unable to say anything - not even ma ma. OOh how I hate these feelings - Yet I glance at him and thank the Lord for allowing us to be blessed with our little lion. He is adorable and how I pray that he will be able to understand certain things throughout his life and that we will be able to enjoy those memories. Please continue to say prayers for his health and for his development -

Friday, October 30, 2009

Brextin is doing awesome by eating by mouth!!

We have been struggling with him eating by mouth ever since he got his G-tube - but lately he has been doing AWESOME!!! The toughest meal is breakfast - for whatever reason he doesn't open his mouth as easily at breakfast as he does at lunch and dinner.

My mom is currently in the hospital recovering from a total knee replacement - while visiting her today - Brextin munched on a sugar cookie - he almost ate the whole cookie by mouth - he was even chewing - - I light up when I see him eating things orally -

Please keep my mom in your prayers as she recovers from her knee surgery and continue to pray for Brextin as we continue to see improvements.

I am hoping to post pictures of Brextin in his lion custom tomorrow -

I am in the process of getting a wingbo swing for our little guy - I luckily have found a used one via Craig's list - it does not come with the long ropes - but I could get the ropes from the company later on for $35.00. I am just waiting to find out how much shipping will cost. I think it will make a wonderful Christmas gift for him. I am just really glad that I was able to find one much cheaper than the asking price for a new one.

Sunday, October 25, 2009

Respite care - might be on the way!

Today I met with a company called ResCare Home Care - the company provides personal care workers to help families with special needs kids or aging adults - it is paid by the state - We won't know if we are approved until around 2 months -

We get to interview possible personal care workers - the vary in ages - from college students to mature adults - I mentioned to today's nurse - I am interested in someone who will be comfortable feeding him via g-tube, one who will not panic if or when he has a seizure or throws up - and one who would be willing to interact with him - and not just sit and watch TV.

I also mentioned that before he or she begins to care for my son that they read over his blog to help better understand his condition - so there are no surprises once they begin.

They could even work a night shift if he ever becomes sick with a cold and won't sleep - I find it tough to sleep when I hear him talking, coughing or crying - and it is tough to function the next day at work when I am unable to get an uninterrupted amount of sleep.

I am hoping I will be able to spend more time with my oldest son - especially in the Winter months - I can take him sledding or to the movies, etc.

Thursday, October 22, 2009

Brextin is back to himself!!!

Brextin is back to himself!!! He even ate a jar of baby food by mouth tonight - it was amazing!!! He even ate one at daycare the other day as well - way to go Brexie!!!

Saturday, October 17, 2009

We are breaking out of here!!

We are getting out of here!! They do agree he is still a very very sick child - however he will probably feel better in his own bed and being surrounded by family. They suggest he stays home for 7 days and anyone that has been around him within the past couple of days should get treated with tamaflu right away - (if they were pregnant, over 65 or under the age of two), luckily no one that I can recall has been around him that fit those categories.

We will continue with the tamaflu medicine, and amoxicillin to help fight off the influenza A and to fight his pneumonia.

He is still sleeping - I tried to stand him today - to help stretch his muscles - he placed weight on his legs for about a minute and then he went into a sitting position. He is still very week and sleepy.

The doctors have told us if he is still sleepy and non-responsive in one week - we are advised to follow up with our local ped doctor - but they figure he will be in this sleep mode for at least 7 more days. This type of flu just wears you out they say.

Frusterated - with hosptials

It is now Saturday - and there are no new changes. I just talked to a resident doctor and I am on the impression we will be released today - since we know how to better care for our child than the nurses here - and we would be more comfortable doing it in our own home rather than 2 1/2 hours away.

We still do everything while here, we change diapers, we feed him, we bath him (I have to ask for the supplies), we even give him meds - the only thing they do is monitor his heart, and breathing by looking at a monitor. Last night the IV alarm went off twice - and so I hit the nurse's button - and they never came - so I had to walk down to the nurses station to inform them. On top of it we have to eat their food in their cafe' and each meal keeps adding up. I would rather do this at home being surrounded by family and friends.

I am frustrated because he takes topamax for seizures and it is documented in his chart that he needs the name brand version - and three times they have given me the generic version (luckily I have brought my own drugs and caught it before we gave them to him) - if you scroll down on this blog - you will find out what happens if he takes the generic drug - he breaks out in hives and has an instant seizure (that lasts for awhile which causes us to give him another meds in his butt) - and I would prefer not to add any more complications to his medical history today. (but three times - really - I even pointed to the nurse that it reads "name brand drug only" yet inside the drug package were generic drugs)

Plus he takes two breathing inhalers when he has a cough and breathing issues - and at Sacred Heart they provided two applications and they have not done one application here - which surprises me - since you can tell breathing has been an issue -

They have said that he looks really good for having this type of flu - often kids need to have oxygen added - and he is able to breath on his own. This is a very positive. There are about 8 other kids currently here with the same type of flu.

Thank you for all of the prayers - he is still very very sleepy -and we are anxious for him to back to himself.

Friday, October 16, 2009

Brextin is postive for H1N1 (please pray)

We went to the ER last night in our home town and he had a temp of 105 by forehead - but only 103.9 rectal 30 minutes later - and then we drove him ourselves to Rochester Mayo - where he was admitted - we finally got into our room on the intensive care floor around 4:30 in the morning - it has been a very long day!!

He has been taking flu medicines since Wednesday just to be safe - they were not interested in testing him because there is a 30% of false/negative test results. However once we got here to Rochester they tested him and the tests were positive for H1N1- but the good news is that he is breathing on his own and his heart beat is where it should be - he does have a terrible cough and is sleeping a ton.

Andy has been sick as well as Brayden - but all are feeling better - I never got sick - which is strange since I cuddle Brextin so much - they said that parents often build up a positive immune system - I have notified my school in hopes they will disinfect my room - just as a safety precaution.

So many sad things go through your mind when you hear that your child has the H1N1 sickness - but in all honesty - the doctors are making me feel comfortable and reassuring me that he will pull through this and will recover. He just needs his sleep (he has been sleeping non-stop since Sunday)

Please pray that he will continue to fight and pull through. He sure has traveled many roads and this one is just a detour not a dead end.

Sunday, October 11, 2009

Lymph nodes?

Each Friday Brextin receives a massage at a wonderful place here in town (in hopes it will help with body recognition) (they use him as a training patient so we save big time on the costs!!!)- and the therapist mentioned she felt some bumps - so I called our local nurse and she thought the bumps were probably lymph nodes (they are the size of a pencil eraser and they move as you touch them)- and we shouldn't be to concerned - but to continue to watch them - in case they were to grow in size.

I plan on asking the doctors while we are at Rochester Mayo this Friday and next Monday.

Has anyone else experienced lymph nodes?

Both kids are sick YUCK!!

Yesterday Bray was sick - with a cough and a fever (104 degrees) - at night he was feeling better until 1:00 am came around - then he felt as if he was going to throw up (nothing happened) - then came Brextin - he started to cough and throw up around 6:00 am - Brextin's fever was 102 but is coming down - he was only throwing up foam - luckily he has the G-tube so we have been able to pump in food and fluids into him - he has yet to throw up any food - which is puzzling - he is now resting in my arms as I am typing this - Brayden has been sleeping most of the day as well -

The positive side is that both boys were sick on the weekend so no work time was lost - we will have to wait and see tomorrow to see if we will need to stay home with the boys.

Brextin is scheduled for an EEG this Friday at Mayo - it will be a 24 hour study - Andy will be doing this visit - and then I will go to his appointment on Monday - this will be the day that we will get the results of his EEG study.

I have been reading up on some postings at the following website . . . it is a site in which parents are able to connect with their stories - I posted the water neck ring and the merry muscles device - but I see someone posted a device called the WINGBO the device looks as if it would be helpful for Brextin but the price is just to high for us right now - I have looked at Craigslist - but I was unable to find any for sale.

He is starting to outgrow his bouncer - so I have been looking for another device that would allow him to bounce - that was when I ran across the radio flyer horse with a safety saddle. I searched and searched for the best deal and came across the toy for around $100. - I was waiting for it to be a Christmas gift - but I couldn't wait. So I bought one and put it together - He is slowly rocks on it - I will try to post a video later on when he is feeling better. I have to put two pillows under his feet so he is able to push off on something - unless his feet hang in the air and he just sits on it.

I was able to visit our local United Cerebral Palsy branch on Friday and am borrowing a one step communication device - we have one at home and now he will be able to have one at daycare as well - it is a switch that allows you to record your voice on it and when he pushes the button - he is able to hear the voice - we try to record his own sounds - he likes to hear himself every chance he can.

Please say a prayer that both of our boys are feeling better in no time and that we don't catch their bug.

Sunday, October 4, 2009

Look at Brextin sitting on knees!!

Here are some photos of Brextin sitting on his knees - he has been getting better and better at it (we do have to place him in this position) - he does have the reflux to catch himself if he falls forward - at times - not always - but at times - so often he is able to get into the four point position - see video.

Saturday, October 3, 2009

I finally got supplies - but from Ebay not from insurance!!

In order to feed Brextin I need to use a tube that attaches to his feeding tube - our insurance company - Group Health - will not cover the tubes - the reason - because the tubes are not durable medical equipment - since they can only last for about one month and then will need to be tossed - due to risk of bacteria forming into the feeding tube - I just shake my head -

Since insurance won't cover them - I have to seek them from some place else - luckily the state of WI will buy two a month for Brextin - one tube goes to daycare while the other one stays home.

The tubes are constructed out of plastic and have been known to break on us - so we needed a back up - so I went to ebay - and I am forever grateful to the seller who sold us her extra tubes. I looked into buying them from a medical suppler on-line and I could get 5 tubes for $75 - but thanks to ebay - I got a ton more at a cheaper price. It is sad to know that I have to turn to ebay or craigslist to buy medical supplies for our son - it is just really sad!!

We are scheduled for another EEG - Mayo never called they just sent us his agenda - he are scheduled for doctor appointments on the 16th, 17th and the 19th. We are not interested in missing three days of work so we are hoping that we can move the two doctor appointments that are scheduled on the 16th to be bumped to the 19th - currently I am not having any luck - I think Mayo thinks that all of their patients live near them - however we are 2 1/2 hours away.

He is scheduled to see the ear doctor to check on his ear tubes on the 16th and also a follow up appointment for his g-tube (we still have granulation - but it is getting better) and his 24 hour EEG is on the 17th. We are hoping these doctors can see him while he is getting his EEG - or after we see his neuro doctor with the results of his EEG.

I was very anxious for his EEG a couple of weeks ago since his seizures were non-stop but luckily he hasn't had any since he has been back to name brand seizure drug. Andy will go up on Friday while I will go on Monday - we usually take turns as to who attends his appointments - since we need to remain working to help pay the bills.

Wednesday, September 30, 2009

It has been heaven!

Ever since we switched back to our name brand seizure drug - Brextin has been doing wonderful. He hasn't thrown up since Saturday night - He is however waking up often in the middle of the night just crying - we think he may have gas so we open up his feeding tube and a gush of air comes out - however he continues to cry - since he can not talk - we have no idea as to why he is crying - we try to console him and then head back to bed - often he does finally fall asleep.

I am still waiting for Mayo to return my call - Brextin is suppose to have an EEG scheduled to check for seizure patterns and some blood tests - however it has been a week - since Mayo has returned my call - I did call today - but they of course said they would call me back once they could figure out appointment dates.

We have been struggling for feeding tubes - since we only get two provided to us threw Medicare insurance a month (since my work insurance won't cover them since they are not considered to be durable medical equipment) - but luckily I was able to find our needed feeding tubes via ebay - and will be receiving some shortly.

If you check the comments - someone stopped by Brextin's blog and shared with me a helpful site called Oley Foundation - I noticed there is a link for medical supply exchanges so I might follow up and inquire on the site - they also provide support groups with similar situations.

Saturday, September 26, 2009

Things are looking better :-)

It has been a couple of stressful days lately - Brextin started to throw up once we switched to a pill form of topamax - I was unaware that it was the generic form (until I picked up his generic sprinkles) - I then asked our neuro if we could switch back to the sprinkles to see if that was the reason why he was throwing up - When I picked them up at the pharmacy they told me they were the generic version and assured me that we should not see any difference from the name brand drug - (this was before I went home to find that the pills that were causing him to vomit were also generic) well that was the night from HEL* we were for certain we were going to end up in the ER - however we stayed strong and he pulled through it -

Be careful generic/name brand drugs are not always the same - every person is different.

I emailed our doctor again and asked if he could get us the name brand drug in sprinkle form and he doesn't believe that the drug is causing our problems - but would be willing to call it in - after a fight with our insurance company we were able to pick up the name brand drug topamax (over $800) a month - unbelievable!!! Well we have gone almost two days without any seizures and without throwing up - I sure hope we are able to stay on this track!

We have been doing our best at getting his sprinkles down his tube - we have found if we mix the sprinkles with his food - it doesn't clog up his feeding tube - unlike just the liquids.

I am awaiting a phone call from Mayo - we are trying to get a 24 to 48 hour EEG scheduled and blood work (I have been told when you are on topamax you should get your blood tested - regularly) well he has been on the drug for almost 2 years and has only got his blood work done in the very beginning - hmmm doesn't seem right.

Thursday, September 24, 2009

This was the rash that appeared.

This is the rash that occured while he was having the seizure.

Scary night!!

We have been having a ton of scary moments lately - and last night was the worst - Andy took Brayden to church I stayed home - fed Brextin, bathed him and placed him down to sleep around 8:00 - I actually went and laid down myself - I have been exhausted lately - as I was laying down - I heard a scream - and I mean a scream - then it registered it was Brextin - earlier in the night we had began to try the generic form of Topamax (since we think maybe the pill form of topamax might be upsetting his stomach) I went to pick him up - and he stopped screaming and then about one minute he did it again - I then took him to my room - in hopes he would lay down with me as I watched some TV - however we began to see more seizure activity - activity that wasn't stopping - so we decided it was time for distat - a drug that you inject through the butt -- in hopes it would stop his behavior - he became very limp - and we also noticed a rash around his neck, upper legs, and arms - his eyes were open - and his adams apple kept twitching -

We called the doctors on call at Mayo and she said he is probably sleepy due to the distat and that he will probably sleep for the rest of the night and to follow up with our local ped doctors in the morning - so we placed him in his bed and decided to go to bed - now it was around 10:00 - just as I laid down I heard him cough - sure enough he threw up - we went and cleaned up his sheets and bathed him again and went back to sleep - now it was around 10:30 - and sure enough he threw up again - so we repeated our earlier steps -

He then finally went to sleep - and it is now 6:00 in the morning and he appears to be resting nicely - I am going to try to post some video of his seizures last night so his neuro doctor can take a look at it -

Ohh how I pray that these terrible days will end and give our family some peace with happy days!!

Sunday, September 20, 2009

Brextin's current photo's of his G-tube still not improving

We are still fighting granulation around his feeding tube - these photos are being posted in hopes of nurse Rachael having a chance to look at them - we use silver nitrate every other day and then place gauze around it - two times a day. We also place a cream around the button in hopes it will help against liquid discharge. Each time we pick him up - he tends to flinch - so I know it is of some discomfort.

Brextin all smiles!!!

Brextin was full of smiles at dinner time - so I thought I would include this video - he can be a very happy baby -

Brex excited while eating!

This is a video of us feeding Brextin with a device my dad designed - it has been very helpful. Here he is very excited - plus I show his new foot braces - they are cute!!

Saturday, September 19, 2009

ShopKo experience (Brextin throws up in public Yuck!)

Brextin just got some new braces (with dinosaurs) on them - and the company suggested that Brextin should wear shoes that have a rounded toe - so I went to Shopko to see if I could find a pair - and they did - the shoes even have Velcro - and they have a camo print - which I am sure big brother will like -

However - as I wondered throughout the store - he had a seizure while sitting in the cart - I quickly moved the cart to an area that did not have carpet on it - just in case - he decided to throw up - and sure enough he did - mind you at this point I had nothing with me to wipe it up - so I then asked the shoe department associate if she could call a Shopko associate over to help me and I explained to her that my son just had a seizure and he just threw up - at this point - two customers came up and asked if they could do anything - I gratefully asked if they had any Kleenex in their purses so I could clean up my son as well as my hand - and they both offered - however still no associate - however the shoe department associate came back and gave us a roll of paper towels - which was an asset - then after it was all cleaned up a Shopko associate came up and we mentioned that she should have the area cleaned - but not to be frightened and reassured her that my son did not have the flu or a sickness and that he only threw up because of the seizure. During this whole moment - I began to cry - probably because I was embarrassed - and one of the customers offered me a hug - which was comforting.

I still can not believe that he went over 5 months without throwing up and now he is back at it - it just nerve wrenching!!! OOh how I pray that this vomiting stops!!

Friday, September 18, 2009

This is a video of Brextin throwing up - right after he had his seizure

We have gone a LONG time of without having him throw up - and now we are back to it - it just has us in a whirl wind - I prayed so hard to keep him from throwing up and we were blessed for 5 months and now we are experiencing it all over again - this video is very graphical and I mean graphical - it is of him throwing up - I have posted this so those that take care of him - are aware what he could do at any given moment - this is part of the reason why it is so tough to find RESPITE care.

This video is of Brextin in mid-seizure while being fed via feeding tube

The purpose of me posting this is so our neurologist can view it - I was feeding him and all of a sudden he had a seizure - this one appeared to be different - he actually did some blinks in-between - and his throat or Adam's apple looked as if it was twitching - I even thought he stopped breathing afterwards he threw up - I will post that video as well -

Please understand I know these videos can be tough to watch - but this blog allows us to communicate with doctors that are 3 hours away - and it has been a very helpful -

Wednesday, September 9, 2009

Family time!!

We got to spend a little R&R at my parents cabin. Boy did we need that!

Brextin's Mic-key button and granulation

Brextin got his button installed about 3 weeks ago and we have been battling granulation - it is a type of build up that forms around his button (his feeding tube) - we have to use silver nitrate to burn it off - it doesn't hurt as long as we only touch the infected areas -
The very first time we saw the build up - I was concerned that it was infected so we went to our local urgent care last Saturday but that doctor refused to do anything so we called our local doctor - and she came in on a Saturday and showed us how to use the silver nitrate and to use it every other day - I am beginning to think I should receive an honoring degree as a nurse and a therapist after all that we have gone through with our son.
Please forgive me - as these pictures are disgusting - but the main reason why I keep this blog is to help others out - and when this first occurred I could not find a picture on the Internet to compare it to - so I have decided to post Brextin's photos.

We have been very busy!

We have had good and bad days lately - school has started again for me - and so I am not able to update the blog as I was during the summer - but I will do my best to update it - when there are any improvements or set backs.

Here is a photo of Brextin while he is having one of his seizures. We were up at my parent's cabin. I will try to post the video as well - however the video was taken in the middle - I wish I was able to get the full seizure on tape - but we just never know when they will strike - this one occurred while he was napping on his belly - I noticed his hands getting stiff - and rolled him over and saw that he was having a seizure. There is nothing one can do - you just have to let him have it - I like to reassure him and myself that everything will be ok.

Tuesday, August 25, 2009

G-tube feeding (last video - explaining how to flush the tube)

This is a video explaining how to flush the tube - to clear the g-tube. Flush with about 15 -30 cc's of water.

G-tube feeding (How do you know if he is full?)

Here is a video - explaining what you do once the fluids will no longer drain downward. remember to clamp the extension tube before you empty the syringe.

G-tube feeding continued (bolus feeds)

This video will show you how we add a syringe into his extension tube and allow gravity to drain the food into his stomach. Brextin drinks Rice milk with Reliv supplements.

G-tube feeding continued (extenstion tube and clamp)

This is the second part of feeding our son through a G-tube. This one explains how to attache the extension tube and the clamp - that needs to be closed in order to prevent stomach juices from coming up.

G-tube feeding (at no means am I an expert)

These are some videos on how to feed our son via g-tube. This is how to connect it. These are for anyone who will be taking care of our son either through daycare or RESPITE. I have yet chosen to do respite - I am fearful of leaving our son in the care of a total stranger - however I will be looking further into it - so I can spend more valuable time with his older brother.

Friday, August 21, 2009


MEDEK day 5

MEDEK 5th day

MEDEK 5th day

We had two sessions lasting 45 minutes on our 5th day of MEDEK therapy - but on our last visit - our therapist created a home exercise program for us - and the videos are to long to included on this blog - but I will try to post as many videos as I can.

Wednesday, August 19, 2009

Surgery went well - we are back at home.

The surgery went well - we stayed over night in the hospital for observation and so far everything looks good. He is already sitting up today and is willing to stand while holding onto our fingers - He was fed via pump and feeding tube throughout the night and this morning we were able to feed him by mouth and then by a bolus feed - this is when we are able to place liquid into a syringe and allow the milk or formula drain into his stomach by gravity. The first time was uneventful. However I can not say the same when it comes to medicines - we thought it would be useful to use during medicine time as well - however his seizure meds get caught in the tube and actually cause a blockage so we are going to ask to get the med in a pill form instead of the sprinkles.

I must say the first time I looked at his g-tube on his stomach it caused me to tear up - but in the long run I really feel it will be very beneficial to him.

Tuesday, August 18, 2009

Where are all the special needs parents - Essay?

This was sent via one of our list serves and thought I would share it -

Where Are the Parents?By Sue Stuyvesant, Parent

I am mom to Michelle, 9 years old, microcephalic, athetoid/spastic CP, cortical visual impairment, seizure disorder -- and CUTE!

OK, now for the reason I'm posting.To make a long story short, earlier this week a question was asked by some nitwit official as to why there weren't more parents (of special needs kids) involved in the local PTA and other issues that have come up that directly involve our kids. His question, which was passed on to me was, "Where are the parents?"

I went home that night, started thinking - and boy was I pi**ed - and banged this "little" essay out the next day on my lunch break. By the way, I took copies of this to the school board meeting that night, gave it to a couple of influential people and it WILL get around...... To make

Where are the parents?

They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering, "Is this the time when my child doesn't pull through?" They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.

Where are the parents?

They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.They are busy, trying to survive!

Sue Stuyvesant 10/15/96: Permission to duplicate or distribute this document is granted with the provision that the document remains intact.Sue passed away in October 2003. Michelle passed away a week before she as to turned 18 in September 2005.