Wednesday, December 30, 2009
The second dive was wonderful - no throwing up and no seizures -
We will be heading back home tomorrow after his two dives and his last therapy session - and then on Sunday - another one of my relatives will be taking him to his dives and therapy appointments - as I head back to work.
Once I hear anything from my relative - I will try to post - and keep everyone updated -
Thank you so much for your support - it is needed as each day seems more and more stressful as we still do not know what his future holds for himself or our family. Right now we just love him for being who he is and continue to pray for further development.
http://secure.cartsvr.net/catalogs/catalog.asp?prodid=1114128&showprevnext=1 Here is a link for the thera-tubing - we usually get it from his therapist that we see in Hudson, Wi.
Tuesday, December 29, 2009
The bad thing is that Brextin had another seizure while in the middle of the dive - (but luckily he did not throw up) The seizure lasted about 1 minute.
One thing that you need to be cautious with while doing oxygen dives are the ears - and this morning I was concerned with one of Brextin's ears - one ear has been draining more than usual and there was even a red discharge yesterday - so I was concerned that one of his ear drums had ruptured (however he wasn't showing any signs of pain) - but I had the doctor look at it and he said the ear looked like there was some puss in the ear - however it was draining properly and it shouldn't bother him during the dive - so we went ahead and did this mornings dive.
The good thing - is that today during speech - he started to suck from a straw - check out his video!! Way to go big Guy!!!
Monday, December 28, 2009
You can only imagine the mess he made in his hood- I just felt so helpless - I couldn't do anything until we were done with the dive- but the second dive went fine -
However our therapist that we saw today for Craniosacral (CS) therapy said she was able to release a lot of tension in his body and head. I just wish we had a therapist locally that performed CS - the price just is a shock to me - it costs just as much as an occupational, physical or speech session. ($90 for 60 minutes) When we see the therapists in Hudson WI - each one of them are trained for CS therapy - but they are still 60 minutes away.
Pete the talking parrot - it repeats everything that is said - it isn't crystal clear - but it is repeated in your very own voice - see video located below http://www.shopgadgetsandgizmos.com/product/3731/
Chuckle Buddies - Motion Activated Rolling Laughing Dog Puppy
http://www.amazon.com/Chuckle-Buddies-Activated-Rolling-Laughing/dp/B002SZ2Y90/ref=sr_1_1?ie=UTF8&s=toys-and-games&qid=1262043680&sr=1-1 (I found this at the mall - it is quite cute - ours will roll when there is any type of sound - such as a clap or a voice) I don't think this is the exact one - but very similiar - our rolls and then rolls the other way - (I bought this in hopes he would be able to track it with his eyes) http://www.youtube.com/watch?v=TkXeYWn4xaY Here is a video off of you tube.
Chewable necklaces - http://pacificpediatricsupply.com/cart/index.php?main_page=product_info&cPath=8_29&products_id=852 and a bracelet.
Chewlery Soft Elephant Necklaces - http://pacificpediatricsupply.com/cart/index.php?main_page=product_info&cPath=8_29&products_id=780
Gripper Rattle - http://www.amazon.com/Tolo-86280-Gripper-Rattle/dp/B00000IU35/ref=sr_1_20?ie=UTF8&s=toys-and-games&qid=1262043458&sr=8-20 (He really shakes this toy)
Tolo Activity Play Cube http://www.amazon.com/Tolo-89360-Activity-Play-Cube/dp/B00000IUBL/ref=sr_1_26?ie=UTF8&s=toys-and-games&qid=1262043458&sr=8-26
Sunday, December 27, 2009
However the best moments came when we introduced the book called, The Elf on the Shelf - http://search.barnesandnoble.com/Elf-on-the-Shelf/Carol-V-Aebersold/e/9780976990703/?itm=1&usri=elf+on+the+shelf Since I was going to be gone about 5 days before Christmas I asked my daycare provider to read the book to him and to go about hiding the elf each and every day - boy did Brayden get involved with this activity - he named the little elf - Frisbee - I picked Frisbee up when I got back from Brextin's oxygen dives (Adults can touch the elf - but once a child touches it - it looses it's magic) - and Brayden's eyes lite up knowing that Frisbee was going to spend the the next couple of days at his house - we even had to bring the elf over to Grandma's house on Christmas Eve. I highly suggest if you have a child who believes in magic - you have to check out this book - it was a ton of fun!!!
Brextin has been doing well - we did see two seizures - over the past 4 days and am hoping we won't see anymore -
I will be doing 8 more oxygen dives this week along with Craniosacral therapy and his regular therapy located here in Madison - then I will switch with another family relative who will help finish off with the rest of the 20 odd dives - while I head back to work.
We continue to pray for success for our son's development -in hopes he will move forward and improve on some of his milestones.
Wednesday, December 23, 2009
We will add one more oxygen dive on to his schedule in January -
It is comforting knowing I will be able to enjoy Christmas with my family near -
Merry Christmas everyone!!
Tuesday, December 22, 2009
The oxygen center mentioned that if Madison gets hit as hard as they claim - their center won't be open either on Thursday - they will inform me on Wednesday if they plan on being opened or not. But to me - it sounds as if Thursday will have better driving conditions than Wednesday unless the rain begins to freeze.
I hate to say it but - technology might be on our side - if all else fails and I am unable to get home - I did bring my web camera with me and I could use skype to connect with my family - the downside is that both of my family members (my mom and my husband) do not have laptops - but they do have web cameras on their desktops - so if all else fails - I could have my son open up each gift while he sits in front of the webcam - so I won't miss any memories - however I really want to enjoy helping him make a plate of cookies and milk for Santa and to leave a key on the front door for Santa as well - since don't have a chimney :0)
As for our dives - both dives went well - when I say this - it means no seizures occurred - which I am always concerned with - especially since we are still weaning him off one of his seizure meds . This Thursday - is the day that we get to remove two more topamax pills from his daily meds - He had physical therapy yesterday and speech was today.
Monday, December 21, 2009
Check out this video:
Sunday, December 20, 2009
I just watched a clip of Jenny McCarthy discussing the added benefits of oxygen treatments with Ellen via You Tube - so I know Ellen is aware of the benefits - the stimulus money could help us with payment of the treatments and possibly allow him to get his intensive therapy program that is suggested to go along with the oxygen treatments - we are unable to afford the $9,000 price tag of intensive therapy. Here is the video of Jenny and Ellen http://www.youtube.com/watch?v=mUndbmAzPqs or possibly we could even get a portable oxygen machine to use at home :-)
I am sure there are a ton of people who submit requests and I am only one of many - but we certainly can however dream!!! Happy Holidays!
Thursday, December 17, 2009
He does as well receive birth to three services - but those services cost us as well - we have a monthly pro-rated rate. The therapy sessions are starting to add up - on top of it - we are on our way to try another 40 sessions of oxygen treatments (which are not covered by insurance either) The first time we tried oxygen treatments - it cost us $4500 - this time the center has a deal for those who are returning patients - and we only have to pay $2000. Then of course since the center is located 3 hours away and it is required you do two dives a day for 4 weeks straight - we have to stay in a hotel - which is another $2500 in added costs - Money money and more money - it is all very frustrated -
Most families do not have to spend their hard earn money on therapies - they actually get to take vacations or on toys for themselves - then of course my husband kept me grounded the other day and said we will need to probably back off on some of his therapy treatments knowing a handicap van is in our future- lucky us - I just try to stay positive and continue to pray for further development - Please join me in more prayers and hope for success.
I am getting very anxious for our trip to Madison again - I will continue to post - if we are lucky enough to see any more benefits from his oxygen therapy - (the last time we did the oxygen treatments we did an intensive therapy suit program - that involved 4 hours of therapy each day - and actually our insurance paid for all $9000 of the cost - well not really - I am still waiting for a refund - and it has been over 6 months - but since my school district changed insurance companyies - there is no way that the new insurance company will cover the intensive therapy program - which totally disgusts me knowing that there proven records that most kids see added benefits with the intensive therapy program. I have fought our new insurance company and they will not budge - I truly hate the added financial problems on top of trying to raise a child with extreme needs. Peace be with us!
Tuesday, December 15, 2009
The one night that I struggle with is the night in which - my husband goes to the gym - there just isn't enough time to bath both kids, cook dinner, and feed both kids and then actually spend some time with each one and by having a personal care worker allows me to actually sit and take a breath!! I am truly in love with the fact of having an extra set of hands to help me out!
Wish us luck!!
Saturday, December 5, 2009
Thursday, December 3, 2009
Written by Karen Taylor-Good and Lisa Aschmann and performed by Karen Taylor-Good.The album "The Life That's Chosen Me" is available for organizations to use for fund raising needs. http://www.harmonizingwithhumanity.com/
FYI - I see my comments are not able to be seen or written - but when I googled the problem - I noticed others are having the same trouble and it states that this blog site is checking into the problem. Hopefully the comments will be back and up soon -
Friday, November 27, 2009
* 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.
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
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
Saturday, November 21, 2009
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
Sunday, November 8, 2009
(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.
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
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
Saturday, October 31, 2009
Friday, October 30, 2009
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 http://www.wingbousa.com/index.htm 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
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
Saturday, October 17, 2009
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.
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
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
I plan on asking the doctors while we are at Rochester Mayo this Friday and next Monday.
Has anyone else experienced lymph nodes?
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 . . . http://www.momsincommon.org/ 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 http://www.wingbousa.com/index.htm 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 -
http://www.epinions.com/reviews/Radio_Flyer_Classic_Rock_and_Bounce_Pony_with_Sound 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. http://www.swaaac.com/Files/shortcutsheets/One_step_communicator20.pdf
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
Saturday, October 3, 2009
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
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 http://www.oley.org/equipexchange.html so I might follow up and inquire on the site - they also provide support groups with similar situations.
Saturday, September 26, 2009
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
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
Saturday, September 19, 2009
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
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
Tuesday, August 25, 2009
Friday, August 21, 2009
Wednesday, August 19, 2009
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 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.
Monday, August 17, 2009
Sunday, August 16, 2009
Thursday, August 13, 2009
He is doing a great job during the therapy - and amazingly staying awake - he is however very tired throughout the session and often falls asleep as soon as we leave.
I have been doing my best to use the MEDEK techniques each time I sit or stand Brextin up.
Our last session is at 4:30 tomorrow and then we plan on going out to eat with our uncle John and we might head to NY - but we have been staying grounded a lot- it has been a challenge taking Brextin anywhere lately - we have found not a ton of places around here are handicap accessible and he is getting to heavy to carry for a long period of time - and it can be a challenge taking the stroller up and down steps - even if we fold it.
We board our plane - very early on Saturday - I selected an early flight so I can make it back home to attend a co-worker's wedding. Since it can be a challenge to find a sitter for our special child - I will probably take him and my oldest son with me to the wedding.
Currently the only person willing to take our son is my mother and since she has been with me throughout this trip (I am forever thankful for her help during this adventure)- she deserves a break - I think it is time I check into respite services in our area - I have always been scared leaving him with a stranger - and hoping he is in good hands - I think there is a lady who attends Our Savior's Lutheran Church who is respite certified and she mentioned to me that her very own son's had epilepsy - so maybe I will give her a call when I get back.
Brextin has been through a ton of events in his short life and I can only pray for the best for him and our family. My heart and prayers go out to each and every family who is battling the same situation as ours - it sure can be a battle to remain strong at all times.