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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 http://www.wingbousa.com/index.htm 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 . . .

video

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.

Dads???

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. http://epilepsy.emedtv.com/keppra/keppra-side-effects.html 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!!
videoWay to go Brextin!!! Go Go Go!!!