With Easter being this past weekend time got away from me and I wasn't able to update Marek's blog. Let's see, where to begin.My mom went home last weekend (she needed to bring home all her winter clothes and bring back all her spring clothes) and we gave Ryan's mom the weekend off so we could be our own little family again. It was nice just being the three of us. We got Marek a bike trailer and took him for a ride which he loved! We spent lots of time playing with our peanut, visiting with Gigi and Grandpa (which was the first time Ryan's dad was able to see Marek in months), doing some Easter crafts and enjoying Marek's good mood. That mood changed Sunday night. I think the new steroids finally got in his system. Although Ryan was staying here at the house I was on my own at night from Sunday to Wednesday (that is when my mom was getting back). I cannot explain how hard it was to take care of our steroid pumped baby by myself. He is back to waking up every hour with this high pitched scream wanting to eat, be rocked, or walked around. Then after a sleepless night we had therapies in the morning and doctor appointments in the afternoon. I think I called my mom every few hours begging her to come back sooner. We made it through though and my mom AND dad came down on Wednesday. Its the first time that my dad was able to see Marek for months. I enjoyed watching BOTH my parents spending time with their grandson.
Ryan unfortunately had to go back to his parent's house Wednesday night for the rest of the week because he started to get sick. He was prescribed medicine and was able to come back Friday night but wore a mask while he was home.
We celebrated Easter on Saturday. It was nice to have BOTH sets of grandparents with us. Marek enjoyed having a house full of faces. He loves to be a ham and make people laugh. The Easter bunny came on Sunday and brought Marek lots of goodies. His favorite gift though came from his Auntie Kourtney. She got him a door bouncer. Although he doesn't "bounce" in it he is starting to use his legs ever so slightly. Marek hasn't even wanted his feet on the ground for the last 8 months so the fact that he is trying to straighten his legs while in the bouncer is wonderful. THANKS NINI!
As far as Marek's development is going, it's a SLOW process but we think (fingers crossed) we might be back on the right road. This week he is able to sit up much better. Last week we referred to him as "Linguini" because he was just a limp noodle when trying to do anything. This week he seems to have better tone through his trunk and is able to sit up on his own for short periods of time.
Last week we were slowly increasing his dose of Topamax. We got his bicarbs checked last Monday. We found out that his bicarbs dropped to 20 (normal limit is 20-27, when we started Topamax this time his bicarbs started at 26). Since it was still within normal limits his doctors increased his dose but we had to go back to the hospital last Thursday to get his levels checked again. On Friday we got some good news. His bicarb level actually increased, it was at 21! Although not a huge increase, the doctors told us that typically when your bicarbs increase, even slightly, it means your body is now able to tolerate the medicine, so they increased his dose again on Friday. We will continue to increase his Topamax dose every three days until we reach a "therapeutic level". Marek is only about half way to reaching a full dose. Since his bicarbs have now stabilized, the doctors are now able to increase his steroid dose from low dose to high dose. This will happen this coming Thursday. Our fingers are crossed that once he gets on high dose Prednisolone this will be his miracle combination and we can get rid of the monster seizures once and for all. We need lots of prayers please.
Marek is still having spasms/seizures. He is having a "big" cluster every other day or so which lasts about 20 minutes. He is also having several small clusters or single spasms throughout the day. We are hoping to get seizure control soon. Our neurologists scheduled an EEG and a PET scan for April 24th to see if Marek has a focal point where his seizures are originating from which would make him a surgical candidate.
This coming week is a pretty low key week for us. Usually we have multiple therapies and appointments to go to, but this week we only have PT on Wednesday. We had to say goodbye to Papa (my dad) this morning. He has to get back to work. Marek will miss him and so will I. He was such a BIG help. He took the 4 am shift every morning and had all Marek's bottles washed and put away before I woke up each morning. He also put up Marek's swing which he loves. THANKS DAD!
Sounds encouraging! Even little steps are still steps in the right direction. So happy you all got to spend time together! I enjoy seeing the pictures of smiling faces. Hang in there...prayers for all of you.
ReplyDeleteAm One of the happiest woman on earth since my son was cured from the problem of seizure,which he has been having for eight years now,he do have the attack two to three times a week,which is affecting is education and his life.i got the contact of a doctor from the post of one Mr smith thanking he for curing his seizure problem,i got the contact and contacted him then he made me to know that the medication is a permanent cure, and that was how i got the medication which i used on my son,and for six month now there have been no sign of seizure in him again.any one with such problem can contact him on his email drwilliams098765@gmail.com
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DeleteNATURAL & EFFECTIVE TREATMENT TO SEIZURE (EPILEPSY): Our son has temporal lobe epilepsy, He has seizure and had a grand mal with rage episode (8 men to hold him down), Our son's seizure is constant throughout the day according to EEG results. We had used several medicine which include: 600 Epilem 100 topolex 150 Epitec X2 Daily Dopoquel and cilift, Keppra, Topomax lasted for about 3 days, but I put an end to that due to my son losing weight and being lethargic. I recently got a natural medicine that handle Epilepsy with no side effect. It is an herbal medicine. William Herbal Product is the only effective treatment I have ever used.
ReplyDeleteNote: There is no cure for epilepsy yet but effective treatment of Epilepsy is available. for more info, contact Dr.William with this Email: drwilly37@gmail.com
How my daughter was saved from grand mal seizure.
ReplyDeleteI am not really a fan of sharing my personal private story on the internet but i decided to do this because this joy is too voluminous for me to hide. My daughter which i took over 8 years after marriage to conceive had her first seizure at age 8 and ever since then it has been from one seizure to another in school, in church, at picnics. This got me worried because she has a bright future that i do not want epilepsy to become a hindrance, i tried several doctors in Texas and none could help with an effective cure. I went on the internet and saw testimonies about a treatment for epilepsy which a doctor offered and i was interested, i got in contact with him and i was able to get the medicine for my daughter which she used for 3 months as he instructed and it has been over 6 months now she is doing just fine without any allergies or aftermath effects. If you are suffering problem try to reach him too on (josephalberteo@gmail.com) i can count on him for a cure for you too.
Dr.William product is a real cure to Tinnitus, I am 38 years old, I suffered from permanent tinnitus for about 10 years, mostly in my right ear... which means I've got this constant ringing in my ears, which has also made me somewhat deaf. It's like this Whee! noise in my head all the time. My T was more steady, this is due to prolonged exposure to the loud volume of concerts. Looking after your ears is unfortunately something you don't think about until there's a problem. I wish I'd thought about it earlier. There were days when I didn't know whether I would survive, I was so tormented by this symptoms. When I lay down to sleep it bothers me the most, As I lay my head on the pillow, it cancels out all the other noise but the Tinnitus. The GoodNews is that after using William Herbal medicine, Tinnitus is gone, try it also it may work for you. There are real cure and do not be discouraged. Hang in there... Better days will come (email: drwilliams098765@gmail.com).
ReplyDeleteWOW I HAVE NEVER BELIEVE IN HERBAL REMEDIES.MY NAME IS JOY I have been a patient of tinnitus ringing ears since 35 years. I had tried a lot of anti viral med prescribed to me by doctors over the years but I could not see any improvements in my symptoms. One day while going through the internet , i got to know about this great Herbal Dr who uses his herbal remedies in curing people,quickly i contacted him and he prepared a herbal medication for me which i received and used as instructed. After few weeks the improvement were very visible. Outbreaks has stopped and the sores started to heal. I would recommend this to all my friends,families,around the globe suffering from tinnitus ringing ears.you can contact him through his email on drwilliams098765@gmail.com.THANKS TO YOU ONCE AGAIN DR WILLIAMS.
ReplyDeleteDr.lewishill product is a real cure to Tinnitus, I am 38 years old, I suffered from permanent tinnitus for about 10 years, mostly in my right ear... which means I've got this constant ringing in my ears, which has also made me somewhat deaf. It's like this Whee! noise in my head all the time. My T was more steady, this is due to prolonged exposure to the loud volume of concerts. Looking after your ears is unfortunately something you don't think about until there's a problem. I wish I'd thought about it earlier. There were days when I didn't know whether I would survive, I was so tormented by this symptoms. When I lay down to sleep it bothers me the most, As I lay my head on the pillow, it cancels out all the other noise but the Tinnitus. The GoodNews is that after using lewishill Herbal medicine, Tinnitus is gone, try it also it going to work for you. There are real cure and do not be discouraged. Hang in there... Better days will come (email him on: drlewishill247@gmail.com)
ReplyDeleteALL THANKS TO DR WILLIAMS FOR CURING ME FROM THIS TERRIBLE DISEASE TINNITUS.
ReplyDeleteAppreciation is the key to doing more that is why I have took some
time out to thank some one who cured me of my 4 years TINNITUS
problem. It became a major problem to me as it was affecting my
marital life and I was no longer comfortable so I decided to look for
a solution and I came across a post of Dr willaims and how he has been
helping people of the same problem I contacted him and told him all I
have been facing in my life. He told me how to get his product and how
to take it after every thing I find out that all was now okay with me that my TINNITUS RINGING EARS was gone that is why I have come out
today to say thank you to him .you can contact his email address drwilliams098765@gmail.com for people with similar condition..
My daughter suffered from a terrible tinnitus for more than 23 years which started after she turned 5 we all thought it will end but got even worse as days went by. We tried all several treatments and therapy prescribed by various doctors we met but to no avail, she lost total concentration and screamed most times. She usually tells me she hears hissing and ringing noises. This were steady noise that disrupted her entire life, even at night she screams even more because the sounds become louder because everywhere is quiet and she slept less because of this. I was able to contact Dr.lewishill. on the matter and his medicine was able to restore her back to normal and she is very okay now without any side effects whatsoever. If you have Tinnitus, do not hesitate to contact him on drlewishill247@gmail.com for advice and for his product. I hope this helps someone out there.
ReplyDeleteDr.William product is a real cure to Tinnitus, I am 38 years old, I suffered from permanent tinnitus for about 4 years, mostly in my right ear... which means I've got this constant ringing in my ears, which has also made me somewhat deaf. It's like this Whee! noise in my head all the time. My T was more steady, this is due to prolonged exposure to the loud volume of concerts. Looking after your ears is unfortunately something you don't think about until there's a problem. I wish I'd thought about it earlier. There were days when I didn't know whether I would survive, I was so tormented by this symptoms. When I lay down to sleep it bothers me the most, As I lay my head on the pillow, it cancels out all the other ear. The GoodNews is that after using William Herbal medicine, Tinnitus is gone, try it also it going to work for you. There are real cure and do not be discouraged. Hang in there... Better days will come (email him on: drwilliams098765@gmail.com)
ReplyDeleteHow can I ever stop thanking Dr William for the great thing he have done for me, i got an accident when I was 27 years old from that day on i started experience ringing ear problem(tinnitus) i have taken all the western drugs prescribe by various doctor but to no avail . my tinnitus was very loud in the afternoon and I sleep less at night because of this problem i stop my work, few days later i was going through the Internet and I saw a post of a woman testifying about Dr William herbal remedies on how she was being cure for over her 30 years suffering from tinnitus the story Really motivated me that I have to speak with my husband about it, and he said i should give him a try, i contacted Dr William and explain all i have be facing in my life. He assured me that everything is going to be fine if only I can get his herbal portion, i said yes and I requested for it, few days later the herb was sent to me in Kuwait,i started using it as instructed by Dr William for me to take it for 21 Days which I did, can you imagine after talking Dr William herbal medicine for just two weeks i started experience results, it was like a miracle,and now i am permanently cure from this terrible tinnitus, i promise that am going to publish his herb on thing my last breath for the great deed he have done for me. For those with similar ear problem should please contact him on his email address drwilliams098765@gmail his a good man and am proud of him.
ReplyDeleteDR WILLIAMS HERBAL CURE TO TINNITUS
ReplyDeleteAppreciation is the key to doing more that is why I have took some time out to thank some one who cured me of my 4 years tinnitus problem. It became a major problem to me as it was affecting my marital life and I was no longer comfortable so I decided to look for a solution and I came across a post of Dr williams and how he has been helping people of the same problem with his herbal remedies I contacted him and told him all I have been facing in my life. He told me how to get his product and how to take it after every thing I find out that all was now okay with me and that my tinnitus problem was gone that is why I have come out today to say thank you to him and for any tinnitus problem either from man or woman. Contact him on drwilliams098765@gmail.com his a man that take good care of his children
DR WILLIAMS HERBAL CURE TO TINNITUS
ReplyDeleteAppreciation is the key to doing more that is why I have took some time out to thank some one who cured me of my 4 years tinnitus problem. It became a major problem to me as it was affecting my marital life and I was no longer comfortable so I decided to look for a solution and I came across a post of Dr williams and how he has been helping people of the same problem with his herbal remedies I contacted him and told him all I have been facing in my life. He told me how to get his product and how to take it after every thing I find out that all was now okay with me and that my tinnitus problem was gone that is why I have come out today to say thank you to him and for any tinnitus problem either from man or woman. Contact him on drwilliams098765@gmail.com his a man that take good care of his children
COMPLETE CURE TO TINNITUS: I had tinnitus in both ears for fifteen years with a high pitched two tone sound, the noises are constant and have learned to ignore the ringing. Later, another sound was added, a deep tone that has a sporadic rhythm, that mimics human speech. It varies from soft and muted, to painfully clear, and loud. Have try sound machines, ear plugs, my hearing aid, and medication all to no avail rather I have a difficult time sleeping. Lately I was directed to a Doctor called William on internet who provided solution to the problem. Do not be discourage, dr williams product is a permanent cure to Tinnitus. Contact him with this email (drwilliams098765@gmail.com)
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteCOMPLETE CURE TO TINNITUS: I had tinnitus in both ears for fifteen years with a high pitched two tone sound, the noises are constant and have learned to ignore the ringing. Later, another sound was added, a deep tone that has a sporadic rhythm, that mimics human speech. It varies from soft and muted, to painfully clear, and loud. Have try sound machines, ear plugs, my hearing aid, and medication all to no avail rather I have a difficult time sleeping. Lately I was directed to a Doctor called William on internet who provided solution to the problem. Do not be discourage, dr williams product is a permanent cure to Tinnitus. Contact him with this email (drwilliams098765@gmail.com)
ReplyDeleteThere is a permanent cure to Tinnitus, I started having tinnitus at the age of 54, and I have taking different medication but no solution, my tinnitus was always very much disturbing in the afternoon majorly sunset, and I don't get good sleep at night.my family were also very much worried about my condition until I came in contact with a doctor (Dr Kenneth) who then sent me his medication which I used for one month and I was completely cure. am living happily and comfortably with my children in a good health I give all thanks to God for using This doctor Dr Kenneth to solve my tinnitus problem.
ReplyDeleteAny one with such Issues can contact this doctor on drkenneth854@gmail.com
There is a permanent cure to Tinnitus, I started having tinnitus at the age of 54, and I have taking different medication but no solution, my tinnitus was always very much disturbing in the afternoon majorly sunset, and I don't get good sleep at night.my family were also very much worried about my condition until I came in contact with a doctor (Dr Kenneth) who then sent me his medication which I used for one month and I was completely cure. am living happily and comfortably with my children in a good health I give all thanks to God for using This doctor Dr Kenneth to solve my tinnitus problem.
ReplyDeleteAny one with such Issues can contact this doctor on drkenneth854@gmail.com
WE WELCOME YOU ALL TO DEVANSH HERBAL HEALTH CARE.
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I have had two myomectomy, abdominal in 05/2012 and laparoscopy in 02/2014. I have never been pregnant; not to my knowing. I’m feeling hopeless and the fibroids are growing again. Doctor said that it look like I may need another myomectomy. I know that I have a fibroid the size of a goose egg(6cm).so i was online looking for help when i saw a post about this dr buba who has helped many with root ans herbs so i wrote to him he gave me some advice and told me what to do which i did then he sent a bottle of a herbal drug to me through DHL which i used for seven days and today i am cured already all thanks to him if you
ReplyDeleteare in my shoes or have any related sickness
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CONTACT DR.BUBASPELLHOME@GMAIL.COM OR CALL +2348087937686 FOR URGENT HELP
I am Matthias lang, from Orlando u s a, i was diagnosed with tinnitus for 6 years, i lived in pain with the knowledge that i wasn't going to ever be well again, i contacted so many doctors on this issue,and i have use so many western drugs prescribe by various doctors and all was no avail, because i was determined to get my life back, one day i was researching for this disease on internet and i saw a post about devansh herbal health care who cure different manners of diseases, including tinnitus, I contacted them via email: devanshherbalheathcare@gmail.com and made purchase of the tinnitus herb, i received the herb through USPS within 24 hours, when i received the herb i applied it as prescribed and i was totally cured of tinnitus within few's days of usages,and on thin now i have never experience any ringing in my ears again,few days later i went back to my doctor and he confirmed i was completely cured from this disease, am so happy now, You do not have to suffer more just contact him for his medicine on devanshherbalheathcare@gmail.com.com he will definitely put an end to that hearing problem of yours
ReplyDeletei am happy today that my son have been cure from seizure, which he had for
ReplyDelete10 years now, he do have the attack five to seven times a week, which
affecting his educational system and his life. when i was going through the
internet i come across Owens post thanking Dr Lewis hill for curing his
seizure problem, and i got the contact of Dr Lewis hill i quickly contacted
him then he made me to know that the medication is 100% cure, and that was
how i got the medicine which i used for my son, after which i took my son for
medical test It worked! Over a year now, my son have not show any symptoms
of seizure and I believe my son is cure if you need his help email him on
drlewishill247@gmail.com or call him on +1 323-244-4884
COMPLETE CURE TO TINNITUS: I had tinnitus in both ears for fifteen years with a high pitched two tone sound, the noises are constant and have learned to ignore the ringing. Later, another sound was added, a deep tone that has a sporadic rhythm, that mimics human speech. It varies from soft and muted, to painfully clear, and loud. Have try sound machines, ear plugs, my hearing aid, and medication all to no avail rather I have a difficult time sleeping. Lately I was directed to a Doctor called William on internet who provided solution to the problem. Do not be discourage, dr williams product is a permanent cure to Tinnitus. Contact him with this email (drwilliams098765@gmail.com)
ReplyDeleteMy son recently started having grand Mal seizures at 16 years old. We were prescribed Kepler. We decided NOT to take the medicine and go with a Modified Atkins Diet that entails feeding our son 15 carbs a day with lots of healthy fat. He eats a lot of grass fed beef, free range eggs, organic low crab veggies and is doing fantastic! We could tell a difference in him by the 3rd day. This is not alternative or junk science. Dr. Lewis hill at Johns Hopkins has been championing this diet for years and has been really successful. Doctors are really resistant to this therapy but it works!. Read "Grain Brain" for why it works. He also takes taurine which helped stop the night time teeth grinding, jerking, and unrest in his sleep (also known to stop seizures). And he takes cur cumin as a brain protestant that raises seizures.one day came across Albert post thanking Dr Lewis hill for curing his son seizure problem, and i got the contact of Dr Lewis hill i quickly contacted him then he made me to know that the medication is 100% permanent cure, and that was how i got the medicine which i used for my son, after which i took my son for medical test It worked! Over a year now, my son have not show any symptoms of seizure and I believe my son is cure if you need his help email him on drlewishill247@gmail.com
ReplyDeleteI am sophie from Canada, I once suffered from a terrible and Chronic tinnitus ,in 2016, the doctor told me it has no permanent cure i was given medications to slow down its progress, i constantly felt my health was deteriorating as i constantly go out of breath,and this noise was really terrible especially when am sleeping, i have this constant ringing in my ears for about 8 months, this was really a terrible noise ,on thin one day that i was going through the internet,and i came across a post of Mrs Kate on how she was been cured from tinnitus through dr Williams herbal product, I contacted this herbal doctor via his email and explain everything to him and make purchase of his product,few days later he sent me the herbal medicine through courier service, when i received the herbal medicine i used it for 3 weeks as prescribed and i was totally cured of tinnitus within those week of usage,on thin now i have not hear anything ringing in my ears.if you need his help you can Contact this herbal doctor via his email drwilliams098765@gmail.com for help
ReplyDeletethanks for your good recommendation to Dr Williams with his herb am now also free from tinnitus
DeleteThis comment has been removed by the author.
ReplyDeleteFor those people whose relative are suffering from Tinnitus and maybe reading this, I find it hard that people are still ignorant of herbal medicine when it comes to treating Tinnitus. I have been through many phases over the last couple of years since my (audiological) exam/diagnosis, my tinnitus once buried me in a negative place where many of you are now - or have been. Believe me when I say, “I’ve been there.” I had sudden sensorineural hearing loss (SSHL), losing 70 percent of my hearing up to 4,000 kHz. I began noticing a low level of tinnitus around 51 years old and the diagnosis changed my life in many ways, I spend most of the time in denial and I keep thinking the tests were wrong. But deep down I knew they were correct. The level spiked dramatically, spiraling me down into a pit of depression. I could not sleep or eat; I stayed in bed with sweats and shaking spells; I lost strength and considerable weight. My wife held me in her arms, trying to comfort me, and still I thought I was going to die. Though sharing his story is very difficult. I was always very successful in being able to accomplish anything I set my mind on doing. Tinnitus is a bitch. I feel a need to express my thoughts and feelings about how it affected my day to day living and how its deteriorated since despite the help of some wonderful medics and medicine.
ReplyDeleteI remind myself how lucky to come across aparajita tan herbal medicine which is able to control Tinnitus without any side effect, I felt a moment of relief hoping that I am free from this ailment, and nothing compares to the healing power of nature. Now I believe almost every health problem can be addressed in one natural way or another. The only thing I wanted was for me to feel better. I’m proud to say am Tinnitus free. You can also contact him for advice and more info. aparajitatan@gmail.com
ReplyDeleteI had my first seizure. I was in high school and didn't want anyone to know that I had epilepsy. I had seizures on two occasions. I was so ashamed and didn't want people to think that something was wrong with me. I finally got to the point where I told people that I had epilepsy. I came to the place that I realized that I had to own my epilepsy or it would control me. Epilepsy hadn't really affected my life until about 9 years ago after my first child was born... I am a wife and mother of two beautiful children. I have lived with epilepsy for 20 years Yet, my life has been dramatically impacted by epilepsy. I had search for cure online without no hope. I met a Man called DR Lewis hill, i contact him I made an order of his medicine and I do not experience seizure anymore i was cured form it. So if you are in the same situation as mine contact him on this email drlewishill247@gmail.com And He also have herbs medicine to cured the following diseases; eczema,urethra wart,chronic problems.Herpes, Cancer, Als,Hepatitis, Diabetes, HPV,Infections,ulcer ETC