Today was the boys' 2nd Halloween and Ava's 4th...last year we pushed our sweet little Mickey Mouse babies around and Ava dressed as an Angel. I remember visiting Logan after everyone went to bed that night. :-( I think about all I am missing out on, not getting to show off my triplets together. They should all be crawling and standing now. Instead I had a very hyper wild baby giraffe named Andrew and a special grouchy giraffe named Jacob tonight. Logan did not need a costume he is already my Angel Boy. Yoi know I used to call him this when he was alive, I used to make up songs and sing to him about being mama's angel boy. Never thought he really would be my angel boy in Heaven. Ava was a sweet bumble bee she got lots of candy and is currently sleeping with her bag of candy next to her daddy in my bed.
I don't know what is wrong with me. I've continue to have feelings of jealousy and self pity. I am having a hard time shaking it. I have met a lot of triplet moms since I became pregnant with my boys. I have befriended several. It does not bother me to be around them. I am happy to see their children so healthy and developing well. Where I have this issue is watching mine and not getting to enjoy what everyone else has. Why can't I have 3 little babies all about to start walking. Why can't I even have 2 babies that are starting to walk. Jacob has not been doing well over the past few weeks. He is having a lot of "seizure like" activity. He is starting to get tight again, he is not eating well at all and he is arching like crazy. From an illness state he is doing better than he was a little more than a week ago, he is just not being the Jacob he was 4 or 5 weeks ago. I am getting concerned he is back sliding more. This is really hard for me. Watching Jacob bounce up and down with sickness and health just brings back so many painful memories of Logan's health issues. I have fears that he is slipping farther and farther way. Will he eventually just be a vegetable? Will he even show emotion anymore? Anyways for some reason it just hurt tonight when I was looking at pictures some of the triplet moms posted on their facebook pages with their triplet strollers and 3 babies dressed in sweet costumes. Will I ever get over this??? Its so weird. I hate feeling like this. I don't really think it is so much the "triplet" part, but just the big healthy baby part and how I don't have 2 or 3 big healthy babies. I am so greatful Andrew is doing so well. I thank God for his health everyday.
Things I used to except and just trust in God with have become very hard. I had total faith that Logan was going to be okay. I truly 100% believe God would heal him. God did not heal him like I wanted. He did heal him, he took away the pain, and gave him ever lasting life in Heaven. While he knows no pain and no sorrow, my heart feels as though it has been ripped out of my chest. He is gone..gone...gone...gone....gone. Some days it doesn't even seem real. I wake up and wonder if it was just a dream...Then I poured my heart into my surviving triplets every one who reads this blog and know me knows this,. I have nearly dedicated my life to Jacob. My heart can't help but feel heavy. The more he does not respond, the more illnesses he has, the more spastic, the more seizures, the less he eats, the more I see his toes curl down, etc I don't know how much I can handle. I think back...a child on the brink of death should be much harder than cerebral palsy, but for me its not. With Logan like I have wrote before. I didn't really see any long term uncertainty with him. I knew their were only 2 options either his lungs start getting better or they don't. I was blanketed in prayers. I know without God and all the prayers that were sent up for me and my family, I would have probably have been in the loony bin. Now, I feel alone. I know God is always with me, but I just feel alone though. I hate that Jacob has to be the way he is. I REALLY HATE IT! I don't understand why God chose me to be his mother, I don't understand why he has to struggle so much. Why did Logan and Jacob have to have TTTS causing all these things to happen to ours sons and our family.
Jacob's smile can light up a room, he touches people. I know people are intrigued by him. I wish I could just hear from God...I want to feel that comfort I felt before. I hate uncertainty. I hate thinking about how he is going to get big one day and I may not be able to take care of him anymore. How on earth will I be able to take care of him when he is BIG! I had to stop myself from hyperventilating the other day as I thought the worse. For sure God would not take him from me too. Then I think how life would be without him. Though some might see this as a relief (like the lady who wrote the article about "Good mom's" would do the right thing and put a pillow over their child's face. She wrote the article about how handicap kids were burdens, drains on society etc) me just seeing the article really affected me. I realized with all my self pity I have, that outside of him being "normal" I would not change him. I do not want to have to walk though my life without him or my other babies. He is my challenge and I am going to do my best to give him everything I can. I think off all the thing he will need one day and I will continue to believe that God will provide for me. So, I try not to worry as much about how my bathroom is going to have to be remodeled one day to make it handicap accessible, much less how I may need a new home. My wants for him are great. I would love for him to have his very own hyperbaric chamber. I want him to have a stem cell transplant. I want to do anything and everything I can to give him everything he needs to grow and function. I want to give him the best and latest therapies available. I NEED TO WIN THE LOTTERY TO FUND THIS!
Sorry you have read through my rabble this was just me releasing my feeling and giving myself a pep talk to keep getting through the days.
Sunday, October 31, 2010
Wednesday, October 27, 2010
Answering prayers
I believe God is answering some prayers for use this week. We are all still mildly sick, but much improved from the past 2 weeks. Jacob was solely tube fed for nearly 2 weeks. he has been eating by mouth since yesterday, but I am having to thicken his liquids quite a bit his suck is kinda weak and not as coordinated has it has been .Hopefully over the next week as he continues to get better this will improve.
Jacob had an extremely good day with his physical therapist. When he has good days like this, it gives me a glimpse of hope to see what his potential is. Unfortunately he does all these wonderful things 1 day and then stops doing them for weeks and months! Anyways we will rejoice in what God brings me and be grateful for the "good" days and continue to pray there is many more good days to come.
Jacob was very alert and active today. He was standing well in his walker and when his hands were held. He has had very good head control today. He was sitting with his arms supported on a table without arching backwards. He was mimicking sounds. For example, I asked Andrew if he wanted to go night night and Jacob blurts out very loudly I might add nightnightnightnightnightnightnight LOL Andrew and Jacob were crying night night in unison yesterday. The PT also had him rolling and laying on his side. He really tries hard to roll, he gets about 3/4 of the way there, but he just doesn't have the coordination yet to complete the task. He extends his arms and opens his hands up. I have notice less of him clenching fists and retracting arms to his chest. Anyways I almost wish I would have taken a video of how well behaved he was being today.
His vision is another issue though...I think his glasses are doing nothing for him now. If anything they are making it worse. He hardly tracks at all. He will still follow the spinning light globe thing, but does not look toward the TV anymore. He does not look at your face or follow you when you move across the room. His eyes cross in alot, which I guess is a good thing. It show that he is trying to see. His appointment is this Friday. I hope the doctor has positive things to say and solutions for him. I think maybe a different prescription.
Andrew is doing very well. As always he tends to do everything his own way in and in HIS order. He is now attempting to climb furniture. I caught him standing on the shelf under the end table in the living room. He pulled himself up and then proceeded to put his feet up on the shelve and climb. He gets really mad when he realizes he can't get on top of the table lol. Yesterday he tried to put his foot on the couch and pull himself from the floor to the couch. LOL he might be able to climb on furniture before he can even stand alone or walk. His babbling has become clearer. He is saying mama and da-de to the correct person. He also cries night night when he is tired and ba ba. I am still working with him trying to get him to clap his hands and wave bye bye.
Ava is obsessed with showering, washing her hands, changing her cloths 1000x a day and brushing her teeth and hair...I suppose this is a good thing LOL. She is getting better at school. She is warming up to the other kids a little and is starting to interact with them.
Jack and I are on mission weight loss. We started Body by Vi milkshake things. Basically like slim fast except you make your own. I am only on day 3 but I am STARVING! I don't like the taste of the shake power itself it is cream flavored. You can add whatever you want to them to flavor. We have tried strawberries and bananas, pineapple, and peanut butter and banana. Pineapple did not mask the taste I do not like, but a teaspoon of peanut butter and an entire banana does the trick. It is actually pretty darn good. We eat small snacks 2x a day I try to keep them under 150 calories and then a healthier dinner. I SO look forward to dinner every night now lol I know this is not a "good" or permanent form of weight loss, but you loose weight fast and Jack and I are so heavy that is what we need right now, then we will transition over to weight watchers again. I have an appointment for a lap-band orientation on November 11th I believe. I am still going to look to that route unless I really impress myself over the next few months. I'm hoping Jack joins me..I need to see if his insurance covers it still.
I feel like I am forgetting something, but oh well it will give me something to write later.
Jacob had an extremely good day with his physical therapist. When he has good days like this, it gives me a glimpse of hope to see what his potential is. Unfortunately he does all these wonderful things 1 day and then stops doing them for weeks and months! Anyways we will rejoice in what God brings me and be grateful for the "good" days and continue to pray there is many more good days to come.
Jacob was very alert and active today. He was standing well in his walker and when his hands were held. He has had very good head control today. He was sitting with his arms supported on a table without arching backwards. He was mimicking sounds. For example, I asked Andrew if he wanted to go night night and Jacob blurts out very loudly I might add nightnightnightnightnightnightnight LOL Andrew and Jacob were crying night night in unison yesterday. The PT also had him rolling and laying on his side. He really tries hard to roll, he gets about 3/4 of the way there, but he just doesn't have the coordination yet to complete the task. He extends his arms and opens his hands up. I have notice less of him clenching fists and retracting arms to his chest. Anyways I almost wish I would have taken a video of how well behaved he was being today.
His vision is another issue though...I think his glasses are doing nothing for him now. If anything they are making it worse. He hardly tracks at all. He will still follow the spinning light globe thing, but does not look toward the TV anymore. He does not look at your face or follow you when you move across the room. His eyes cross in alot, which I guess is a good thing. It show that he is trying to see. His appointment is this Friday. I hope the doctor has positive things to say and solutions for him. I think maybe a different prescription.
Andrew is doing very well. As always he tends to do everything his own way in and in HIS order. He is now attempting to climb furniture. I caught him standing on the shelf under the end table in the living room. He pulled himself up and then proceeded to put his feet up on the shelve and climb. He gets really mad when he realizes he can't get on top of the table lol. Yesterday he tried to put his foot on the couch and pull himself from the floor to the couch. LOL he might be able to climb on furniture before he can even stand alone or walk. His babbling has become clearer. He is saying mama and da-de to the correct person. He also cries night night when he is tired and ba ba. I am still working with him trying to get him to clap his hands and wave bye bye.
Ava is obsessed with showering, washing her hands, changing her cloths 1000x a day and brushing her teeth and hair...I suppose this is a good thing LOL. She is getting better at school. She is warming up to the other kids a little and is starting to interact with them.
Jack and I are on mission weight loss. We started Body by Vi milkshake things. Basically like slim fast except you make your own. I am only on day 3 but I am STARVING! I don't like the taste of the shake power itself it is cream flavored. You can add whatever you want to them to flavor. We have tried strawberries and bananas, pineapple, and peanut butter and banana. Pineapple did not mask the taste I do not like, but a teaspoon of peanut butter and an entire banana does the trick. It is actually pretty darn good. We eat small snacks 2x a day I try to keep them under 150 calories and then a healthier dinner. I SO look forward to dinner every night now lol I know this is not a "good" or permanent form of weight loss, but you loose weight fast and Jack and I are so heavy that is what we need right now, then we will transition over to weight watchers again. I have an appointment for a lap-band orientation on November 11th I believe. I am still going to look to that route unless I really impress myself over the next few months. I'm hoping Jack joins me..I need to see if his insurance covers it still.
I feel like I am forgetting something, but oh well it will give me something to write later.
Ears and 15 month Check-Up
This morning Andrew and Jacob had their 15 month old check up. It was suppose to be a "well baby" check up, but...that never works with my kids. They are still sick Sick SICK!
Andrew at 15 months:
is 23.4 pounds (31.4 percentile) for weight.
is 30 inches (14.3 percentile) for height.
a head circumference of 18.40 inches (34.2 percentile) for head circumference.
Adjusted age (They due date was 10/10/09)
At 12 months:
81.3 percentile for weight.
73.2 percentile for height.
88.2 percentile for head circumference.
Jacob:
At 15 months:
is 21.2 pounds (8 percentile) for weight.
is 30 inches (14.3 percentile) for height.
a head circumference of 16.14 inches (less than the 3rd percentile) for head circumference.
Adjused age for a 12 month old:
At 12 months:
22.7 percentile for weight.
51.1 percentile for height.
less than the 3rd percentile for head circumference.
They both have a good growth curve. With Jacob's head he is actually under 0% but it is growing along its own curve.
Jacob has his very 1st ear infection in his left ear. So even though we were at a "well baby" check we still got antibiotics. :-/ So, because of this ear infection NO MORE HYPERBARIC for now. She said 10 days. We are suppose to be finished on the 29th, so we would be able to go back on the 27th. I'm not going back for 2 days. Gas was killing us anyways. The gas between my car and Jack's work commute was costing approximently $1170 a month! On average I filled up every other day except weekends and Jack fills up 3 times in 2 weeks I think. There was the 6 days we spent in th hospital, but we were still having to drive to Tampa..blah anyways. I'm glad it is over for now 2 months in a row was just a little to much. I may try it 1 more time in January.
This biggest thing I must say I have seen a noticable difference in him is head control and muscle tone. Even the doctor noticed today how much better he is doing keeping his head up longer.
Next big appointments for Jacob is 24 hour EEG on the 25th and he sees the the Light House for the Blind eye doctor on the 29th. I think they will change his Rx on his glasses. They don't seem to be working as well as they were when he 1st got them. His eyes are crossing in again when he trys to focus.
***I wrote his on the 18th and apparently forgot to actually post it*** The EEG appt has been rescheduled for November 4th I think...because he was sick. He has his eye doctor appt this Friday at 11:30***
Andrew at 15 months:
is 23.4 pounds (31.4 percentile) for weight.
is 30 inches (14.3 percentile) for height.
a head circumference of 18.40 inches (34.2 percentile) for head circumference.
Adjusted age (They due date was 10/10/09)
At 12 months:
81.3 percentile for weight.
73.2 percentile for height.
88.2 percentile for head circumference.
Jacob:
At 15 months:
is 21.2 pounds (8 percentile) for weight.
is 30 inches (14.3 percentile) for height.
a head circumference of 16.14 inches (less than the 3rd percentile) for head circumference.
Adjused age for a 12 month old:
At 12 months:
22.7 percentile for weight.
51.1 percentile for height.
less than the 3rd percentile for head circumference.
They both have a good growth curve. With Jacob's head he is actually under 0% but it is growing along its own curve.
Jacob has his very 1st ear infection in his left ear. So even though we were at a "well baby" check we still got antibiotics. :-/ So, because of this ear infection NO MORE HYPERBARIC for now. She said 10 days. We are suppose to be finished on the 29th, so we would be able to go back on the 27th. I'm not going back for 2 days. Gas was killing us anyways. The gas between my car and Jack's work commute was costing approximently $1170 a month! On average I filled up every other day except weekends and Jack fills up 3 times in 2 weeks I think. There was the 6 days we spent in th hospital, but we were still having to drive to Tampa..blah anyways. I'm glad it is over for now 2 months in a row was just a little to much. I may try it 1 more time in January.
This biggest thing I must say I have seen a noticable difference in him is head control and muscle tone. Even the doctor noticed today how much better he is doing keeping his head up longer.
Next big appointments for Jacob is 24 hour EEG on the 25th and he sees the the Light House for the Blind eye doctor on the 29th. I think they will change his Rx on his glasses. They don't seem to be working as well as they were when he 1st got them. His eyes are crossing in again when he trys to focus.
***I wrote his on the 18th and apparently forgot to actually post it*** The EEG appt has been rescheduled for November 4th I think...because he was sick. He has his eye doctor appt this Friday at 11:30***
Saturday, October 16, 2010
Logan's Balloon release
Today we participated in the Sweet Pea Project and released a balloon for Logan and Ava release one for our miscarriage in February 2008 at Barnett Park. It was hard knowing that everyone around me had lost a child or children as well. It took a lot not to cry. It was very sweet. I think I will do it every year. On an upbeat to make the occasion less sad their was a classic car show going on with music and lots of people. Ava got to see the Weenie Mobile today and got her 1st Weenie whistle. I got a picture of it, but I am to lazy to upload the picture from my camera. I have to be at work in 7 hours I should really go to bed. Back on track now....we released the balloons at 6pm 10/15/2010. Ava screamed for a hot dog after leaving the weenie mobile. We had to stop in a gas station to get her one LOL. We picked up pizza. When we got home we burned 2 candles for an hour. Apparently we were suppose to start burning them at 7pm..well we never do anything on time around here so ours burned from 7:30-8:30. :-) We burned 1 for Logan and 1 for a pregnancy loss which Jack decided tonight he was going to call Amber :-/ I think that is a little weird. :-) I sat at home and gorged myself with more food than 1 person should eat in a day much less 1 sitting. It's okay we are starting some new diet thing as soon as it comes in the mail...we will see how that will go. I don't believe I have mentioned it because I know I am always talking about sick kids, but Andrew and Jacob are having their monthly sicky right now...it started I'd say about 4 days ago. I am hoping it is peaking and will be getting better next week. Jacob has been tube feed for 3 days now. He will not even suck. Andrew is not eating very much. Jacob is also doing his vomiting like he did before that landed him in the hospital. I think I have a little better control over it now. I stopped feeding him over night because 2 of the 4 night I have woke up to find him covered in vomit!!! Andrew has even been throwing up a little. Please pray for them and our family. I just hope each illness gets less severe and shorter. I would love just to go 2 months without an illness here. IS THAT REALLY TO MUCH TO ASK. Well, this is all for now. Thanks for reading and God Bless
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| Logan's balloon |
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| Sending the ballons up |
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| The candles in the front window of our house. One for Logan and one for "Amber"(per Jack) 2/08 pregnancy loss |
Friday, October 15, 2010
October 15th
Today, October 15th, is National Pregnancy and Infant Loss Remembrance day.
Today Jack and I will be remembering Logan by going to Barnett Park and doing a balloon release for Logan at 6pm. When we come home, we will be lighting a candle in his memory. For anyone who would like to light a candle for Logan and all the other babies that have passed I believe to official candle lighting is at 7pm.
IN LOVING MEMORY OF OUR SON LOGAN CHRISTOPHER GUNTER 07/18/2009-01/30/2010
Today Jack and I will be remembering Logan by going to Barnett Park and doing a balloon release for Logan at 6pm. When we come home, we will be lighting a candle in his memory. For anyone who would like to light a candle for Logan and all the other babies that have passed I believe to official candle lighting is at 7pm.
"These are my footprints,
so perfect and so small.
These tiny footprints
never touched the ground at all.
Not one tiny footprint,
for now I have wings.
These tiny footprints were meant
for other things.
You will hear my tiny footprints,
in the patter of the rain.
Gentle drops like angel's tears,
of joy and not from pain.
You will see my tiny footprints,
in each butterflies' lazy dance.
I'll let you know I'm with you,
if you just give me the chance.
You will see my tiny footprints,
in the rustle of the leaves.
I will whisper names into the wind,
and call each one that grieves.
Most of all, these tiny footprints,
are found on Mommy and Daddy's hearts.
'Cause even though I'm gone now,
We'll never truly part."
~Unknown
IN LOVING MEMORY OF OUR SON LOGAN CHRISTOPHER GUNTER 07/18/2009-01/30/2010
Friday, October 8, 2010
Infantile Spasms
I have myself totally convinced that Jacob may be having Infantile Spasms. Not sure if I even mentioned this before. Last Thursday when the Early Interventionist was working with Jacob, toward the end of her hour she came over to me and tells me, "He seems to be having more seizure activity today and I have noticed it more in the last 2 weeks than I've seen him have before." I look at her confused. I have heard her say things to me in the past like "seems like he has had less seizure activity today." So I finally ask her that day what the heck she is talking about. He is on seizure meds for an abnormal EEG, but I have never seen him have a "seizure".
She explains to me that she think he is having mini cluster seizures or what she referred to as break through seizures. So, I asked her what she though a seizure was . She tells me to watch him. She said he will go from doing whatever he is doing then he will stiffen his arms and/or legs. Usually his arms go strait in the air and his head arches back a little and turns slightly to the side. When this happens he stops drooling and making noise. The entire thing happens in less than 5 seconds. Then he will go back to what he is doing and in a minute he will do this 7 or 8 times. Then he will stop for a little bit. At this point he will usually loose focus on what we are trying to get him to do. Then it will happen all over again.
Things that concern me: Of course you know I researched the web and youtube to see what an Infantile Spasm was. A. Most people mistake this 'seizure' as a startle reflex, or in Jacob's case as spastic movements. B. the arching back stiffness is mistaken as reflux. Though Jacob enjoys vomiting when he is sick, when he is well he does not vomit at all. He has had several upper GI studies that showed minimal reflux, that even the doctor said the minimal reflux they see would not usually cause the projectile vomiting, screaming, and arching he has done for month and months. C. Most of these 'seisures' start occurring between 6-8 months. Some of his really jerky movements that I considered to be spastic movements because he was getting bigger started around this time to his adjusted age. He should be 1 on 10-10-10 if they were born on their projected due date.
So I watch theses videos of kids on youtube doing similar things to what Jacob does.It seems the more stimulated or noisy the room is the more spastic movements I would notice. Just the more and more I watch him throwing his arms out for 5 seconds out of no where and doing it 8 or 9 times in a row the more I have convinced myself that maybe he really is having seizures.
His brain damage is so extensive, that seizures are very common and I considered myself very lucky that he had not had any seizures....well, if what the Early Interventionist thinks is seizures is trues then he has been having them for many months and I never caught on to it not being normal for him and his CP. I trust her option. She is a RN and has been one for many years. She worked most of her career in the NICU. She never told me Infantile Spasms, but when explaining it to a friend, she asked if that is what it was because she knew someone else who had a kid that did the same thing.
The bad thing about theses mini cluster seizures is that if they are not controlled they can cause more brain damage....not that Jacob does not already have enough.....they cause mental retardation, blindness, and in a child that don't already have it, it can lead to CP.
Hmm. Jacob is already considered blind, which could be from his initial damage and I really have no clue where he is cognitively. He seems to some what know what is going on around him.
I called the neurologist right after she left last Thursday. Of course no one called me back until last Friday, then they said they would get him in for a video EEG ASAP 1st thing next week. Monday passes....I call and I am told the girl who does the schedule will call me back, Tuesday passes, I call again Wednesday and they tell me once again that the girl who does the schedule will call back and that they faxed the Rx over to the hospital. On Thursday I decided just to call the hospital myself. Apparently on the Rx they sent over read this: they wrote "scheduled for this week" So the lady that is suppose to call me thought it had been scheduled already. So I ask for an appointment and she says well, we definitely are not going to get him in this week, or next...so he has an appointment for a 24hr videoed EEG on the 25th of this month :-/ I think I will call the Doctor's office again this week to see if they can pull some strings. That office staff is horrible though, and I think I will be scheduling a new patient visit with a different pediatric neurologist in the near future. I don't care if I have to drive a little further to get there. Hell all his other specialist are in Tampa or Orlando.
I hope I am over reacting and they do not think it is seizures and that it is truly just spastic movements, but I suppose we will see.
This is a link that has some info on Infantile Spasms:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1464162/
She explains to me that she think he is having mini cluster seizures or what she referred to as break through seizures. So, I asked her what she though a seizure was . She tells me to watch him. She said he will go from doing whatever he is doing then he will stiffen his arms and/or legs. Usually his arms go strait in the air and his head arches back a little and turns slightly to the side. When this happens he stops drooling and making noise. The entire thing happens in less than 5 seconds. Then he will go back to what he is doing and in a minute he will do this 7 or 8 times. Then he will stop for a little bit. At this point he will usually loose focus on what we are trying to get him to do. Then it will happen all over again.
Things that concern me: Of course you know I researched the web and youtube to see what an Infantile Spasm was. A. Most people mistake this 'seizure' as a startle reflex, or in Jacob's case as spastic movements. B. the arching back stiffness is mistaken as reflux. Though Jacob enjoys vomiting when he is sick, when he is well he does not vomit at all. He has had several upper GI studies that showed minimal reflux, that even the doctor said the minimal reflux they see would not usually cause the projectile vomiting, screaming, and arching he has done for month and months. C. Most of these 'seisures' start occurring between 6-8 months. Some of his really jerky movements that I considered to be spastic movements because he was getting bigger started around this time to his adjusted age. He should be 1 on 10-10-10 if they were born on their projected due date.
So I watch theses videos of kids on youtube doing similar things to what Jacob does.It seems the more stimulated or noisy the room is the more spastic movements I would notice. Just the more and more I watch him throwing his arms out for 5 seconds out of no where and doing it 8 or 9 times in a row the more I have convinced myself that maybe he really is having seizures.
His brain damage is so extensive, that seizures are very common and I considered myself very lucky that he had not had any seizures....well, if what the Early Interventionist thinks is seizures is trues then he has been having them for many months and I never caught on to it not being normal for him and his CP. I trust her option. She is a RN and has been one for many years. She worked most of her career in the NICU. She never told me Infantile Spasms, but when explaining it to a friend, she asked if that is what it was because she knew someone else who had a kid that did the same thing.
The bad thing about theses mini cluster seizures is that if they are not controlled they can cause more brain damage....not that Jacob does not already have enough.....they cause mental retardation, blindness, and in a child that don't already have it, it can lead to CP.
Hmm. Jacob is already considered blind, which could be from his initial damage and I really have no clue where he is cognitively. He seems to some what know what is going on around him.
I called the neurologist right after she left last Thursday. Of course no one called me back until last Friday, then they said they would get him in for a video EEG ASAP 1st thing next week. Monday passes....I call and I am told the girl who does the schedule will call me back, Tuesday passes, I call again Wednesday and they tell me once again that the girl who does the schedule will call back and that they faxed the Rx over to the hospital. On Thursday I decided just to call the hospital myself. Apparently on the Rx they sent over read this: they wrote "scheduled for this week" So the lady that is suppose to call me thought it had been scheduled already. So I ask for an appointment and she says well, we definitely are not going to get him in this week, or next...so he has an appointment for a 24hr videoed EEG on the 25th of this month :-/ I think I will call the Doctor's office again this week to see if they can pull some strings. That office staff is horrible though, and I think I will be scheduling a new patient visit with a different pediatric neurologist in the near future. I don't care if I have to drive a little further to get there. Hell all his other specialist are in Tampa or Orlando.
I hope I am over reacting and they do not think it is seizures and that it is truly just spastic movements, but I suppose we will see.
This is a link that has some info on Infantile Spasms:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1464162/
Tuesday, October 5, 2010
Welcome to Fall!
It is so wonderful finally feeling the nice cool dry air coming to Central Florida. I actually opened the windows and turned off the A/C today for the 1st time since spring. :-)
Jacob is still in a non-sick state. His congestion that he always has is hardly there. Knock on WOOD! That I don't report this and repost in a few days he is sick!! Nothing new, exciting, or fantastic going on with him. I would not say he is regressing, but defiantly not progressing. I feel like we are sitting still not even baby steps forward :-(. Jacob never does anything consistently. He will not even take steps this week. He takes his glasses off all the time. I can hardly get him to wear them. I still have not noticed any major difference with him wearing them. He still does not track objects or at least small ones and he will not track anything that does not have a light. So I'm not sure if this glasses have helped his vision at all or if they have, very little. He still seems like he looks at me more when I hold him. He gets excited when I walk toward him. So he does recognize someone standing by him. Oh, I just don't know anymore. The HBOT is free, but we are spending a little over $500 in gas every 2 weeks between Jack driving the 32 miles to his job and me driving the 60 something miles one way to St. Pete. I'm getting tired. I tired of rushing around to get things done in the morning and spending the entire afternoon on the interstate. I hope Jack takes him by himself tomorrow or Thursday. He insists that we drag the whole family on his day off to go because he does not want to drive by himself. He tells me it is not fair because I make my sister come with me when I go.This is only because I make her get in the chamber with him so I do not have to :-) Honestly at this point it would be nice to have some "alone" time in the car. I'm never alone unless you consider me sitting up at 1am while everyone is asleep as alone time. I need some get out of the house by myself time!!!
***editing blog*** so I just took out 3 paragraphs of me going into a total rant about my husband LOL
Andrew is a MONSTER! He is a big bad MONSTER! That kid does not stop for nothing. His entire day consists of leaving a path of destruction behind him. He did good this morning working with the early interventionist. She got him to sit still for almost an hour putting shapes in and out of a bucket. I worry about him. I worry if he is going to have attention problems and learning problems or if he is just being a boy. Kinda bothers me that some of the other multiples I know that are months younger than him are standing and walking already. Oh well I am continuing trying to take everything one day at a time, and not think to far into the future.
I think I need a better antidepressant. I am so tired all the time I can't even make myself get up and exercise. I so looked forward to my Zumba DVDs and I just stare at the box. I know I would feel better and have more energy if I would just get up and do it. I was watching all those I used to be fat shows the other night. Makes me so much more depressed that I want to eat a cookie. So I am taking small steps like trying to avoid eating fast food on the way to St Pete and on the way back...and when I do stop it is a kids meal and not a full meal with a Large coke. :-) Mmmm McDonalds french fries Oh how they have me addicted.
I watched Ava do her ballet today at school. They are so freaking cute, but I am not sure the $$ I spend to let her go is worth the 30 minutes of kids dancing around 1 time a week. There are to many kids in the class for her to actually learn anything, but hey I guess it is some exercise for her and she gets to wear he pink ballet tutu LOL
Okay now that I am done writing a blog about nothing I will end it and my fat ass is waiting for my yummy pizza I ordered to get here because I'm feeling all sad and depressed because Jack rear ended someone at work and no I get to wait 2 days to see if he is going to be suspended over it...he always F's up on the last day he works before his days off. Maybe I will win the lottery this week :-/
Crap I just looked at Jacob's face and his eye is all swollen and red WTH!!!!!
Jacob is still in a non-sick state. His congestion that he always has is hardly there. Knock on WOOD! That I don't report this and repost in a few days he is sick!! Nothing new, exciting, or fantastic going on with him. I would not say he is regressing, but defiantly not progressing. I feel like we are sitting still not even baby steps forward :-(. Jacob never does anything consistently. He will not even take steps this week. He takes his glasses off all the time. I can hardly get him to wear them. I still have not noticed any major difference with him wearing them. He still does not track objects or at least small ones and he will not track anything that does not have a light. So I'm not sure if this glasses have helped his vision at all or if they have, very little. He still seems like he looks at me more when I hold him. He gets excited when I walk toward him. So he does recognize someone standing by him. Oh, I just don't know anymore. The HBOT is free, but we are spending a little over $500 in gas every 2 weeks between Jack driving the 32 miles to his job and me driving the 60 something miles one way to St. Pete. I'm getting tired. I tired of rushing around to get things done in the morning and spending the entire afternoon on the interstate. I hope Jack takes him by himself tomorrow or Thursday. He insists that we drag the whole family on his day off to go because he does not want to drive by himself. He tells me it is not fair because I make my sister come with me when I go.This is only because I make her get in the chamber with him so I do not have to :-) Honestly at this point it would be nice to have some "alone" time in the car. I'm never alone unless you consider me sitting up at 1am while everyone is asleep as alone time. I need some get out of the house by myself time!!!
***editing blog*** so I just took out 3 paragraphs of me going into a total rant about my husband LOL
Andrew is a MONSTER! He is a big bad MONSTER! That kid does not stop for nothing. His entire day consists of leaving a path of destruction behind him. He did good this morning working with the early interventionist. She got him to sit still for almost an hour putting shapes in and out of a bucket. I worry about him. I worry if he is going to have attention problems and learning problems or if he is just being a boy. Kinda bothers me that some of the other multiples I know that are months younger than him are standing and walking already. Oh well I am continuing trying to take everything one day at a time, and not think to far into the future.
I think I need a better antidepressant. I am so tired all the time I can't even make myself get up and exercise. I so looked forward to my Zumba DVDs and I just stare at the box. I know I would feel better and have more energy if I would just get up and do it. I was watching all those I used to be fat shows the other night. Makes me so much more depressed that I want to eat a cookie. So I am taking small steps like trying to avoid eating fast food on the way to St Pete and on the way back...and when I do stop it is a kids meal and not a full meal with a Large coke. :-) Mmmm McDonalds french fries Oh how they have me addicted.
I watched Ava do her ballet today at school. They are so freaking cute, but I am not sure the $$ I spend to let her go is worth the 30 minutes of kids dancing around 1 time a week. There are to many kids in the class for her to actually learn anything, but hey I guess it is some exercise for her and she gets to wear he pink ballet tutu LOL
Okay now that I am done writing a blog about nothing I will end it and my fat ass is waiting for my yummy pizza I ordered to get here because I'm feeling all sad and depressed because Jack rear ended someone at work and no I get to wait 2 days to see if he is going to be suspended over it...he always F's up on the last day he works before his days off. Maybe I will win the lottery this week :-/
Crap I just looked at Jacob's face and his eye is all swollen and red WTH!!!!!
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