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Sunday, February 28, 2010

Looking into an adaptive bike for Brextin's 3rd birthday

We have two trikes that allow us to push him - but they are not intended for special needs children so I need to figure out a way to adapt them. I am looking into pedal adaptive that would allow us to Velcro his feet to - so when we push him - his legs would actually spin - but at this website http://www.flaghouse.com/Adapted-Tricycle-Accessory-Foot-Pedal-Attachments-item-5875 they want $78 - are you NUTS!! Why is it that everything that is needed for our children costs so much money. I am seeking out my relatives to see if anyone can be creative - and make them for us cheaper -

Another website that looked promising is http://www.amtrykestore.org/ They might even donate a bike to your special needs child if a therapist/doctor refers you and there is a financial need. They offer different accessories that might be helpful to adapt one of his bikes to fit his needs.

I also went to amazon.com and found these bikes as a possibility:
http://www.amazon.com/gp/product/B002OHD2PC/ref=s9_simh_gw_p200_t1?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-3&pf_rd_r=1RXFPZG6K00MG5SZ8D62&pf_rd_t=101&pf_rd_p=470938811&pf_rd_i=507846 (I really like this one)

http://www.amazon.com/gp/product/B002MOXRTI/ref=s9_simh_gw_p200_t2?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-3&pf_rd_r=1RXFPZG6K00MG5SZ8D62&pf_rd_t=101&pf_rd_p=470938811&pf_rd_i=507846

http://www.amazon.com/gp/product/B002ZZ1T0S/ref=s9_simh_gw_p200_t3?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-3&pf_rd_r=1RXFPZG6K00MG5SZ8D62&pf_rd_t=101&pf_rd_p=470938811&pf_rd_i=507846

http://www.amazon.com/gp/product/B001E6OUZK/ref=s9_simh_gw_p21_t1?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-4&pf_rd_r=1RXFPZG6K00MG5SZ8D62&pf_rd_t=101&pf_rd_p=470939031&pf_rd_i=507846

http://www.amazon.com/Little-Tikes-615221-Smart-Trike/dp/B001UE85DO/ref=sr_1_1?ie=UTF8&s=toys-and-games&qid=1267372545&sr=8-1 (I really like this one)

I allows find it tough to find gifts for our special little guy - but I think this would make a wonderful third birthday gift - so when we go on walks he won't have to be in a stroller or his wheelchair. Can anyone else recommend any other suggestions?

Saturday, February 27, 2010

Speech tools? Has anyone used these?

I am always looking for tools to help enforce better sounds for Brextin - and ran across these tools - I plan on asking our birth to three speech therapist - but am wondering if anyone has used these?
A tongue lateralization:
http://www.dysphagiaplus.com/talk-tools®-tongue-lateralizationelevation-tool-p-596.html?osCsid=yzrixzbjonpdxnmu

Tongue lifter:
http://www.dysphagiaplus.com/tongue-lifter-p-409.html?osCsid=yzrixzbjonpdxnmu

Tools that help with sensory-motor stimulation at the cheeks, soft palate, and pharynx.
http://www.dysphagiaplus.com/oralight®-oral-motor-exercise-system-p-206.html?osCsid=yzrixzbjonpdxnmu

Jaw exerciser:
http://www.dysphagiaplus.com/talk-tools®-exerciser-p-600.html?osCsid=yzrixzbjonpdxnmu

Lip gym:
http://www.dysphagiaplus.com/the-lip-gym-p-242.html?osCsid=yzrixzbjonpdxnmu

First day of no Vigabitran - send us a ton of prayers!

Today was the first day of no Vigabitran - currently no seizures - yet we usually don't experience any seizure changes until day 4 or 5 into the med change. He is still taking 3ml of generic Keppra in the morning and at night. The only big thing we have experienced are the blow out diapers - he has massive blow outs - we are uncertain if it is due to the meds or if it is because he has a terrible cold. Whenever he gets a cold - he gets them bad - each time he coughs - it is as if he is going to throw up - at times he does throw up and other times he doesn't- his eyes only water. That is the biggest thing that I hate - is when his left eye begins to shed a tear. It seems to be quite often - yet I have not idea why the tear comes down only one eye. I just hope he isn't hurting inside.

A miracle did occur today - I got out and went to the spa - I had a 30 minute massage, sat in a chaise lounge, listened to their waterfall, drank a glass of water, read some magazines, and then stepped into their steam shower and then headed back to reality - but boy was it 2 hours of being in heaven!!

Thursday, February 25, 2010

So far so good - by increasing generic Keppra

Once we increased his generic Keppra to 3ml twice a day - we haven't seen any seizures - however he is very very sleepy. He actually slept through the night - which is a miracle in itself- he usually wakes up and begins to babble a number of times throughout the night.

Tuesday, February 23, 2010

Too many seizures to count --uurgh!!

We are now down to 250mg of Vigabitran (he was on 1000mg)- we began this dosage as of Saturday and the poor guy has been having too many seizures to keep track of. (Yesterday he had over 5 - but today our daycare provider told us she lost track - since he kept having more and more) We have been giving 2.5ml of generic Keppra and just upped it to 3ml in hopes of his seizures being controlled.

I just hate seeing him have these seizures over and over - I sure hope the seizures can be controlled by using only generic Keppra.

Monday, February 22, 2010

Today is the tour . . .

We will be touring the school in which Brextin might be attending today - however I was thrown for a loop the other day - when I heard that the district might think he is to medically fragile and he might get home treatment instead - Plus they are unsure if he will actually be attending the school in which I will be touring today - he might be going to a different school instead. (So I am hoping that today is not a waste of my time)

We haven't had his IEP meeting yet - this is where we will discuss his schooling needs - I just get frustrated not knowing where he will be going to school or what he will be taught. One minute I am ready for him to go and then other days I still can not believe my 3 year old will be going to school (since he only functions at a 6 month old).

Saturday, February 20, 2010

I broke out!!

I broke out!! I got out of the house without the boys!!

I thought to myself where will I go - then it occurred to me I better head to the nearest bookstore that offers free Wi-Fi so I could work on a graduate class that I am currently enrolled in. (Word 2007) I have to take two classes within the next couple of years in order to renew my teachers license.

If I have sometime I would like to explore Facebook - I find it to be quite funny - I teach technology classes - yet have never been on Facebook - I just haven't had the time. I find it tough just to find the time to update my son's blog or check my personal emails.

Winter break


We just began our Winter break - we only get a Friday and a Monday off - but I am trying to make the best of it - we went to the eye doctor yesterday and he highly suggested we go back to having Brextin wear his glasses (we have another eye doctor who is against him wearing them) - this doctor really thinks it will help him in the long run - and said he was pleased with how he responded to some of his tests- and thinks there was improvement -

After the appointment I took my oldest along with my mother to ChuckE Cheese's - he had a blast and I must say so did I- some of the games were pretty fun. We use to have a ChuckE Cheese here locally about 15 years ago - but it went out of business so we had to travel 80 miles to locate the nearest one.

Then when we got back my mom offered to keep our oldest for a sleep over - so we had the night alone with Brextin - we watched two movies and some of the Olympics and were able to sleep in a little.

Then my husband escaped to the gym for his 4 hour "away" time - still waiting for mine - which never comes - however while he was gone - I re-arranged Brextin's bedroom and wanted to make more room for our exercise mats that we keep downstairs - I am hoping to do more therapy upstairs - and I thought if I moved up some of his mats I would be encouraged to do so. Plus I thought his walkers would move more smoothly on the mats rather than the carpet. We are hoping that this will be the year that he will begin to walk - our fingers are crossed and our prayers have been said.

Today is the day that we dropped his Vigabritran down to 250mg - he use to be on 1000mg - and currently he has been handling the 500mg just fine - so we pray that the wean continues to do well.

Earlier this week - we had a scare - we went in to wake Brextin up in the morning - and found him laying in a pool of blood by his head- we found out he bit his tongue - it was quite severed - right in the middle - the strange thing was that he wasn't in any pain and it didn't bother him - I still am amazed as to how it happened and why he wasn't in pain.

Tuesday, February 16, 2010

We all are doing much better!

We are all doing much better - and luckily big brother never got sick -:-) which was a bonus.

We will be on a Winter break this week and as always it will be filled with appointments for Brextin. We will be visiting an eye doctor in Hudson and our family will be receiving a tour at a school in which Brextin might be attending this September.

Sunday, February 14, 2010

I got what he had - and it isn't ANY fun!!

My husband predicted that I would get the bug on Saturday - and wouldn't you know - at 2 am - I was throwing my brains up - as it was leaking from the other end - I feel as if a bus has just hit me and is laying on top of me. I have been drinking a ton of juices and even Brextin's pedelite drink - it isn't as bad as I thought it would be - I am mixing it at times with juice. I am afraid to eat anything yet - but maybe today I will be adventurous.

Brextin is still not 100% well - but is doing much better - he has been having about one messy diaper a day and been throwing up about twice a day. He is quite tired as I am as well. We continue to pray that big brother doesn't get this terrible illness - it takes you down for the count. All throughout this illness we haven't seen an increase in seizures which is a plus - he did have one yesterday - but we did decide to continue his wean of Vigabitran - so currently he will be on 500mg - lately he has been on 750mg.

Friday, February 12, 2010

We are back home :-)

It is nice to be back home - from a two night hospital stay.

Thursday, February 11, 2010

He is feeling better but we are still at the hospital

I think they want to be certain - so we are staying another night. He is receiving fluids in two ways. One way is by an IV and the other one is a drip of electrolytes via his g-tube by a pump - I am hoping to begin purred foods tomorrow morning by mouth.

Our hospital stay has had its ups and downs - on the night we arrived the admitting nurse was asking me to confirm his diagnoses. He first said epilepsy - and I said yes - then he said microcephaly - and I said yes - then he said mental retardation - I lost it - and I mean I LOST IT - tears just rolled down my cheeks! In our almost 3 year adventure with our son - he has never been referred to being this ugly word - and I quickly voiced my comments to this young nurse - I could not believe he just said that ugly word to me - he then stated he was only reading what was stated in his medical charts - I gave him a quick lesson as to what other words that could have been said in place of that word - such as developmental delays, challenged, etc.

The odd thing is - just before I went to the hospital I read an article in our local newspaper health section that stated this the medical dictionary is changing - . . .WASHINGTON (AP) -- Don't say "mental retardation" -- the new term is "intellectual disability." I was going to clip the article and send it to the ER nurse. I fully understand that my son does have his challenges ahead of him - however I never want that word associated with him. Here is a link to the article http://www.washingtontimes.com/news/2010/feb/10/changes-proposed-diagnosing-mental-disorders/

One of the good things that has come out of this visit - is that we were visited by a variety of different staff members who remember Brextin when he was here in the past (when he was around 9 months old) and they were interested in being updated in his condition - so we were blessed by some old visitors.

We are still at the hospital -

We went to the ER last night around 10 pm and got moved up to a room around 4:00 am - and it is currently 7:00 am - I might have slept for about 1 hour. I am exhausted - I had to make sure I was awake around 6:00 am to call into work and to type up lesson plans for the sub. Plus since I didn't grab my phone charger - I am without a phone since it died - it just bothers me - to know how much we rely on technology and once it is missing - the world seems to come to a halt.

I was unable to log into the computer in the family waiting room so I am currently using a nurse's computer - and am glad that I am able to update his status.

They have been taking blood work and said his potassium is on the low side so they have started an IV - his vomiting has stopped but it is coming out the other end - and they are total blowouts - and since I am alone - I think I stopped counting the dirty diapers around number 8.

I plan on checking to see how things are at my home - I am hoping my husband is feeling better as well - and I sure hope our oldest as well as myself do not get this bug.

Wednesday, February 10, 2010

Brextin's stomach (for Dr. Lisa)

Here are pictures showing how big Brextin's stomach is - the video located below was - taken to see if he was in pain while pushing on it - to see if there would be some type of infection. We are on the way to the hospital - just to be on the safe side.


video

Brextin and Daddy are down with the flu - YUCK!

The good news is that we haven't seen any seizures since Saturday - which is fantastic - the bad news is that he is unable to keep any food down today - gratefully he has the G-tube which allows us to flush his system with fluids at least. His daddy is down for the count as well - this doesn't happen to often (he thinks he is invisible) - but he is out just like Brextin.

I even canceled his therapy appointment tomorrow - I am hoping to take my oldest to Chaos Water park tomorrow - since they have a promotion in the month of Feb - that every Thursday the park is FREE - usually it costs $20 per person if the child is over 3 years of age - so we are taking advantage of the promotional - that is - if we both remain healthy.

If he remains seizure free and gets feeling better - we will decrease his Vigabitran again this Saturday. We put the wean on hold - since he was beginning to have to many seizures. He is taking 250mg in the am and 500mg at night.

Saturday, February 6, 2010

Onle one seizure today :-)

Brextin just came home and currently he has only had one seizure this morning - lasting about 20 seconds - he is currently taking 3ml of generic Keppra and will drop down to 2ml tomorrow and we will not decrease Vigabitran until we have his seizures under controlled. It sure is nice to have him back - I just wish the hospital would take the time to remove the glue from his hair before he was discharged. It seems to take forever to remove- they say you can use finger nail polish remover - but I don't really like to put that stuff so close to his brain.

Brextin's long road trip to his progress. . .

I enjoyed the time alone - however it also gives me time for my brain to wonder - which at times isn't good. I begin to think of what the future does and doesn't hold for our son. However I also had time to ponder the road that he has already traveled.

I remember when he was a baby and he would lay on his back - and just lay there- I would put a toy in front of him and he wouldn't even grab at it - I remember getting very frustrated and yelling - just grab the "#%&^*" toy - and luckily today he will in fact grab a toy - as long as it is in front of him - he still is unable to grab or reach for a toy that is out of his reach - eye site might be the reason.

I then think of his sitting ability- I remember placing him in the sitting position - when he was a baby - and he would just lean forward and then roll to the side (like a limp noodle) - I again began to get frustrated - and asking - why are you unable to sit - just sit up - it isn't that hard - but it was a hard task for him - and then just one day - he began to sit - I think this occurred when he was around 1 years of age.

I then think about rolling over - we would lay him on his belly -with his face laying towards the ground - and I would say - why don't you roll over - who would want to be in that position - it took him a long time to get the upper arm strength - to allow him to push himself off of his belly. He is now able to roll over from belly to back - but still not the other direction. I am uncertain at what age this occurred at. (I never updated his baby book with his advancements - it would often get me depressed knowing how off schedule he was to the "typical" child.)

I then think of him getting his belly off of the floor into 4 point. I think he developed this skill while doing his first oxygen dives - he was around 2 years old. He would go up and then go right back down- and currently at the age of 2 3/4 - he stays up for quite sometime - still not crawling - but the strength is there. (he has begun to move one knee an inch forward which is a huge step)

I then think of him taking steps - he still isn't doing this alone - but will do it if you hold onto his middle half or his hands. I think this also developed last summer (when he was around 2) - around the same time when we were doing his first 40 oxygen dives and MEDEK therapy in NJ - I still can not get these words out of my mind - which was told to us via an on-call neuro doctor when Brextin was only 4 months old - "your son's brain waves are so slow that he will not walk or talk" When I see him lift his foot and move it forward - gives me hope that he will walk - it just is unknown as to when.

I then think of him making sounds. He has always been a chatty child - however we did lose some of that along with his fun giggle while he was first dx with Infantile Spasms. (this is the only regression we saw - along with eating by mouth) He still is unable to talk - but is beginning to make a couple new sounds. We still have not gotten his giggle back - but he is beginning to smile a lot more than usual (This started once we weaned him off of topamax)

I then think of standing. He still is unable to do this unassisted - but he is moving forward. When he was around 2 1/2 he began to stand up while leaning up against a couch. However he will tip right over if you were not near him (he still doesn't have the relax to put his arms out to catch himself from falling) - However today he is beginning to stand while holding onto a toy walker or even his crib - we do have to place him in this position - but he stays for about 5 to 10 minutes he is even daring and wanting to bounce while standing and holding on.

Then I think of his vomiting issue - this is the biggest improvement - our little guy would throw up - non-stop and we were told it was a brain issue and whenever the brain healed the vomiting would stop. However the doctor at the oxygen center - suggested we take him off of dairy products and that was our miracle solution. Even the GI doctor or dietitians or his neuro at Mayo never suggested this. (his vomiting lasted for a little over one year) He will now vomit occasionally after having a seizure - but it was not uncommon to have him vomit 5 to 6 times a day when he was a baby- and boy does our carpet show it - often it just came up - with no warning. I can not express how grateful we were to see this end.

So as I look back our son sure has traveled a long road and has made significant progress - I sure am very proud of his determination - and can only hope for seizure control and further developmental improvements. I never give up on hope, prayer, love, and faith for our little guy - which we call little muscles!!

Friday, February 5, 2010

Seizure after seizure - YIKES!!

Brextin is currently at St. Mary's with daddy having a 24 hour EEG performed - this was a scheduled routine EEG - however it has came at a time in which we are weaning him off of one of his major seizure drugs - vigabritran - we began to wean him off of the drug last Saturday and never saw one seizure until two days ago and now he is having over 9 seizures a day.

Since our neuro in out of the state we have to rely on the on-call doctor - and she has suggested we increase his generic Keppra to 3ml (currently he was taking only 1ml) so it is a significant increase - however we have to do what we can do to get seizure control. She has also suggested we continue with the 750mg of Vigabitran - and wait to decrease his amount until we have seizures under control.

While at St. Mary's they have asked to do a study on him - so they added three more electrodes onto his head - to monitor "vomiting" after a seizure. Often Brextin will vomit after having a seizure - however lately he hasn't.

I myself have been enjoying time alone for the evening - my sister has my oldest son for a sleep over - so I am currently sitting in my recliner with our weiner dog sitting right next to me - updating my son's blog on my laptop. Plus I just got done watching - All About Steve - and eating Peanut Butter and Chocolate Ben & Jerry's ice-cream. Life is good - now all I can ask for is for the meds to kick in and give my son - seizure control!

Thursday, February 4, 2010

He is back to having seizures

He only had one seizure yesterday - but today he had four- he goes tomorrow to Rochester Mayo for a 24 hour EEG study - we are hoping for good results - he use to have slow brain waves and they said that was common among children who have delays and are on medication. Now since he no longer takes Toppamax and a less amount of Vigabitran we are hoping for improvements.

This Saturday we will drop down to 500mg of Vigabitran - 250mg in the morning and 250mg at night - we might have to increase his generic Keppra - we will have to play it by ear.

He receives additional PT at a center that is located about 60 minutes away (we pay out of pocket for this therapy) and today the therapist said - get the walker out - he is ready to walk - boy as I read that in her notes - it brought tears to my eyes - we currently put him in a "walker for normal kids" but all he does is go backwards and not forwards - but I think we can put breaks on his medical walker - We will need to get it out and practice.

Currently we are putting new tile down in our kitchen and laundry room and our house is up-side down - our kitchen table is in the middle of our bedroom - our fridge is in the living room - our stove is in the hallway and there is dust everywhere and I mean everywhere - boy will I be glad when this project is done. Since business has slowed down for my husband we have started to breath life back into our current home. We plan on building next summer - our next home will need to be handicap accessible.

I have scheduled an eye appointment as well (in Hudson 60 miles away from home)- It sure is tough to find a doctor that will take on pediatric special needs clients - I haven't been happy with the eye doctor at Mayo since he said he isn't able to help Brextin until he is able to say what he can and can not see - well my son may never be verbal - however I believe glasses might help - We saw the same eye doctor last year in Hudson - he was the original doctor who prescribed the glasses. It sure is tough to decide on what is best for your child when you work with two different eye doctors who take two totally different approaches.

Monday, February 1, 2010

Brextin has been doing wonderful with his eating habits!!

Brextin has been eating wonderful!! He has been eating most of his baby food via mouth - he even has rice biscuits for breakfast - all by mouth! I am so excited to see the new improvements - it started to begin a couple of days ago - I have been praying so hard for him to eat more by mouth and to keep it down - and our prayers have been answered- sure hope he continues to improve!!

Brextin's medical bracelet came today

I decided to get a medical bracelet for Brextin - in case we ever got in a car accident - and I was unresponsive - or if his new school was in need of his medical number or my phone number it would be at an arms reach. The band was about $26.00 - which I didn't feel was to bad. Here is the link http://www.americanmedical-id.com/marketplace/build.php?buildwhat=sportband_jfk It just puts my mind at ease.