Carter has grown a whole inch! He is now 35 1/2 inches tall..Just a month or so ago he was still 34 1/2 inches. It is truly an awesome thing! I am going to believe that he is going to keep on growing and that Growth Hormone Treatments wont be in the picture!
I have noticed that Carter has been much more thirsty lately, and I think that being thirsty and growing must go hand in hand for Carter.
Also, I should mention that we go to Omaha January 15 to see the neurosurgeon and the opthoneurologist. Cody is going with me. :)
Carter has been saying really random things lately too...which leads me to believe that his brain is working really hard..He said "Dr. Hellbusch" outta no-where...Hes said "I wanna stick Camden in the water", "I want daddy come home in the tractor!", lots and lots of sentences have been coming out of Carters mouth..and that is a goal for the next year with his SLP! YAY!, hes meeting that goal early! His manners have been improving too, He says: Please, more Please, Help You!, Bless You..We are working on Thank you.. :)
We had a wonderful Christmas, despite the blizzard conditions that kept us immobile! It was well spent though. Sunday we finally had Christmas with my family and had a wonderful time!
Will post more as it comes available!
Have a great New Years! Talk to you in 2010~ Jess
Tuesday, December 29, 2009
Sunday, December 20, 2009
Update from Neurology appt Friday
hello All! I thought that I would write yesterday or even friday night, but that didnt happen. Yesterday was spent doing lots of filing and organizing and then we also did some grocery shopping. So, here I sit with my hubby and kids in the living room, watching a movie and so I thought I had better update the blog.
Carter is such a little fighter, he proved that again on friday when they had to hold him down to put many sticky's on his head in order to perform the EEG. He kicked, he screamed, he cried, he looked at me wondering why I wasnt helping him. It is so hard to sit there and try and calm him when other people are messing with him and he doesnt understand. The EEG took probably 20-25 minutes to do but altogether, (setting up and removing sticky's) it took about an hour. He did as good as any 3 year old would/could do. The tech that perfomed the EEG told me, 'I've been doing this for 25 years, those aren't seizures.' And immediately following the EEG we met with the Neurologist, Dr. Pavkovic. He confirmed that too, said no seizures, and really thinks that Carter's having some brain irritation because of his last 2 surgeries. The brain irritation is causing him to have some eye rolling, eye fluttering, little uncontrollable noises, etc. The Dr. is however referring Carter to an ENT specialist (check balance from ears) and then a Neuro Opthamologist (make sure he doesnt need glasses) just to cover all bases. I am going to be trying to set up both of those appointments plus another visit to the Neurosurgeon (Dr. Hellbusch). I am hoping to coordinate all three on the same day (in Omaha).
Now all we do is wait and pray. Please too be in prayer for Carter as sometimes his balance isnt what it should be and also sometimes he tells us that he needs tylenol. Yesterday he said "shunt hurt" but then laughed after saying so..He probably heard us say "does your shunt hurt?"..but it still makes us a little scared to hear him say that. Will update more if it comes available.
I just might add that I am so thankful for my parents help on Friday, because Cody had to work. They were there when I needed them and cant thank them enough. I needed support and everytime my parents have supported me and my family. Thank you Mom and Dad.
MERRY CHRISTMAS to all and God Bless, Love Jessica
Carter is such a little fighter, he proved that again on friday when they had to hold him down to put many sticky's on his head in order to perform the EEG. He kicked, he screamed, he cried, he looked at me wondering why I wasnt helping him. It is so hard to sit there and try and calm him when other people are messing with him and he doesnt understand. The EEG took probably 20-25 minutes to do but altogether, (setting up and removing sticky's) it took about an hour. He did as good as any 3 year old would/could do. The tech that perfomed the EEG told me, 'I've been doing this for 25 years, those aren't seizures.' And immediately following the EEG we met with the Neurologist, Dr. Pavkovic. He confirmed that too, said no seizures, and really thinks that Carter's having some brain irritation because of his last 2 surgeries. The brain irritation is causing him to have some eye rolling, eye fluttering, little uncontrollable noises, etc. The Dr. is however referring Carter to an ENT specialist (check balance from ears) and then a Neuro Opthamologist (make sure he doesnt need glasses) just to cover all bases. I am going to be trying to set up both of those appointments plus another visit to the Neurosurgeon (Dr. Hellbusch). I am hoping to coordinate all three on the same day (in Omaha).
Now all we do is wait and pray. Please too be in prayer for Carter as sometimes his balance isnt what it should be and also sometimes he tells us that he needs tylenol. Yesterday he said "shunt hurt" but then laughed after saying so..He probably heard us say "does your shunt hurt?"..but it still makes us a little scared to hear him say that. Will update more if it comes available.
I just might add that I am so thankful for my parents help on Friday, because Cody had to work. They were there when I needed them and cant thank them enough. I needed support and everytime my parents have supported me and my family. Thank you Mom and Dad.
MERRY CHRISTMAS to all and God Bless, Love Jessica
Thursday, December 17, 2009
Omaha Tomorrow
Well, tomorrow is the long anticipated day in Omaha. Seems like we have been waiting forever to go to this appointment with Carter's neurologist, Dr. Pavcovik. Carter first has an EEG there at Children's Hospital and then an appt. following to find out the results. Tonight we are supposed to keep him up an hour later and then tomorrow morning we are to wake him up an hour earlier, and then NO nap before his appt at 2:30 tomorrow. This could pose to be a very hard task! I guess they want him to be super tired, cause his brain is more likely to not function as well (isnt that the truth with all of us?)
So, lately something out of the ordinary has been happening. Carter cannot stand to watch Camden eat...cereal or even his little puffers. Carter gets sick, he gags. Its happened a handful of times now..so when its time to have Camden eat, Carter has to be in a completely different part of the house. I am not sure whu this is happening. It just started this last week. Is it his ACC (gag reflex) or is it because he has batteled a small bout of the flu? Is Carters equilibrium off? I am now also wondering that because his balance has seemed to regress in the past few days. Not horribly, but not great to see that happen in any circumstance. I just want to get figured out whatever is happening. Obviously something is happening. I wonder if it could be the length of his catheter (shunt)..because they put a longer one in his last surgery..is it hitting some part of the brain?- causing 'noises', his balance to suffer, his gagging? Is it that he is suffering from small seizures which may also do these very things? I dont know...but we WILL get to the bottom of this...for Carter's sake and for ours.
Will write more tomorrow night or saturday following some answers (we hope).
Thanks and God Bless, Jessica
So, lately something out of the ordinary has been happening. Carter cannot stand to watch Camden eat...cereal or even his little puffers. Carter gets sick, he gags. Its happened a handful of times now..so when its time to have Camden eat, Carter has to be in a completely different part of the house. I am not sure whu this is happening. It just started this last week. Is it his ACC (gag reflex) or is it because he has batteled a small bout of the flu? Is Carters equilibrium off? I am now also wondering that because his balance has seemed to regress in the past few days. Not horribly, but not great to see that happen in any circumstance. I just want to get figured out whatever is happening. Obviously something is happening. I wonder if it could be the length of his catheter (shunt)..because they put a longer one in his last surgery..is it hitting some part of the brain?- causing 'noises', his balance to suffer, his gagging? Is it that he is suffering from small seizures which may also do these very things? I dont know...but we WILL get to the bottom of this...for Carter's sake and for ours.
Will write more tomorrow night or saturday following some answers (we hope).
Thanks and God Bless, Jessica
Friday, December 11, 2009
A hard day
Today has been a hard day for me..I started it with the wonder of what kind of day Carter would have..You just never know. And these past 6 days have been up and down. Yesterday was a better day (until Carter started getting tired around 5 pm)..and now today has been frequent for his 'noises' again. It was also hard for me cause it was me and two boys..and one boy was making noises and complaining of hurting in his fingers and such..and my other little boy was just owly..I think he is teething.
One more week..thats all I can think..I dont think that day can come soon enough..I just want answers..I really cant take watching Carters eyes do what they do during these noises..you know something is going on in his head..Just thinking about this..Carter had noises as a baby..they started after his first shunt was placed..at 8 days old. His head literally was so big that I had to have a c-section. When I was 32 wks pregnant his head was that of a 38 wk baby..and so the docs knew by 38 wks it would too large for me to deliver. Anyways, his head went from large to SUNKEN. His cheek bones stuck out and skull was very visible..and then boom, these noises took place. He had an EEG to check for seizures back then, but it came back negative..they werent seizures..they were brain irritation..The neurosurgeon couldnt explain them..never seem them before..As time went by, his noises lessened and lessened..and then one day I said..Hey he hasnt made his noises for a long time! We had gotten so used to them that we didnt think much of them when they happened.
Well, November 12 and November 13 Carter had two more surgeries..the one the 12th didnt work..and so 18 hours later, they went back in again..This time they placed a longer catheter. Carter was having surgery because his previous catheter got plugged. We were in Omaha Oct. 28-29 and they increased the intercranial pressure from 0.5 (lowest) to 3.0 (highest)...Increased, meaning faster draining..JUST like when he was a baby. And now these noises start again.. COINCIDENCE? I think not..I myself believe that Carter's noises could be from the flow of the shunt being way too high for Carter..And if this is true, his EEG setup for next friday the 18th will come back normal..I guess we will have to see..I just want answers..and want help for my little boy..
I love being home with my boys..but to be home and have to watch my son go through so much makes me sometimes wish I was working..(I do know that if I was working I would go crazy, my place IS at home with my boys right now).
Thats all I have now..I realize that when I am feeling overwhelmed as I did today, I need to call a friend, get in the bible, take a timeout, do something..Barlow Girls song "Never Alone" comes to mind.
Please pray for Carter to have a better day tomorrow..Thanks!
One more week..thats all I can think..I dont think that day can come soon enough..I just want answers..I really cant take watching Carters eyes do what they do during these noises..you know something is going on in his head..Just thinking about this..Carter had noises as a baby..they started after his first shunt was placed..at 8 days old. His head literally was so big that I had to have a c-section. When I was 32 wks pregnant his head was that of a 38 wk baby..and so the docs knew by 38 wks it would too large for me to deliver. Anyways, his head went from large to SUNKEN. His cheek bones stuck out and skull was very visible..and then boom, these noises took place. He had an EEG to check for seizures back then, but it came back negative..they werent seizures..they were brain irritation..The neurosurgeon couldnt explain them..never seem them before..As time went by, his noises lessened and lessened..and then one day I said..Hey he hasnt made his noises for a long time! We had gotten so used to them that we didnt think much of them when they happened.
Well, November 12 and November 13 Carter had two more surgeries..the one the 12th didnt work..and so 18 hours later, they went back in again..This time they placed a longer catheter. Carter was having surgery because his previous catheter got plugged. We were in Omaha Oct. 28-29 and they increased the intercranial pressure from 0.5 (lowest) to 3.0 (highest)...Increased, meaning faster draining..JUST like when he was a baby. And now these noises start again.. COINCIDENCE? I think not..I myself believe that Carter's noises could be from the flow of the shunt being way too high for Carter..And if this is true, his EEG setup for next friday the 18th will come back normal..I guess we will have to see..I just want answers..and want help for my little boy..
I love being home with my boys..but to be home and have to watch my son go through so much makes me sometimes wish I was working..(I do know that if I was working I would go crazy, my place IS at home with my boys right now).
Thats all I have now..I realize that when I am feeling overwhelmed as I did today, I need to call a friend, get in the bible, take a timeout, do something..Barlow Girls song "Never Alone" comes to mind.
Please pray for Carter to have a better day tomorrow..Thanks!
Wednesday, December 9, 2009
Bring the Rain
Bring me Joy, Bring me peace, bring the chance to be free, bring me anything that brings You glory, and I know there will be days when this life brings me pain, but if thats what it takes to praise you, Jesus bring the rain.-Mercy Me
These past few days have been kinda hard on me. It reminds me of the ups and downs we had when Carter was in the NICU. It is just so HARD to watch my son go through whatever it is he is going through..I dont even know. His neurosurgeon suspects seizures, but only God knows what it is that Carter is experiencing. I as a mom just want to get this figured out and move on. I don't want to stay where we are at, helpless. There is no worse feeling.
I hope that I am somehow still a light to Carter..that I can give him joy still and that I dont focus on his 'episodes'. This is day #4 of 15+ 'episodes' or whatever you want to call them. What happens is Carter will make a little pain 'cry'..that is what we have always called them..But then the Dr. said why would he have pain and then be okay right after? Hmmm...thought to ponder. The last day or so (and this could be totally un-related) Carter has been saying "Owey" (sp)..and referencing to his fingers and just a little bit ago, his feet...I dont know what that means..? We are still to wait until next friday, the 18th. If things get worse you can guarantee that I will be finding a way to get him in sooner.
Thats all I have for now. Please keep the prayers for Carter coming..we GREATLY appreciate them.
God Bless, Jess
These past few days have been kinda hard on me. It reminds me of the ups and downs we had when Carter was in the NICU. It is just so HARD to watch my son go through whatever it is he is going through..I dont even know. His neurosurgeon suspects seizures, but only God knows what it is that Carter is experiencing. I as a mom just want to get this figured out and move on. I don't want to stay where we are at, helpless. There is no worse feeling.
I hope that I am somehow still a light to Carter..that I can give him joy still and that I dont focus on his 'episodes'. This is day #4 of 15+ 'episodes' or whatever you want to call them. What happens is Carter will make a little pain 'cry'..that is what we have always called them..But then the Dr. said why would he have pain and then be okay right after? Hmmm...thought to ponder. The last day or so (and this could be totally un-related) Carter has been saying "Owey" (sp)..and referencing to his fingers and just a little bit ago, his feet...I dont know what that means..? We are still to wait until next friday, the 18th. If things get worse you can guarantee that I will be finding a way to get him in sooner.
Thats all I have for now. Please keep the prayers for Carter coming..we GREATLY appreciate them.
God Bless, Jess
Tuesday, December 8, 2009
Since Sunday
Lord, I really wasnt kidding when I said that we couldnt take anymore with Carter...we really cant! I dont know what is going on, only You do Lord..Please help my son! We were just in Omaha yesterday for a checkup..which was much needed because of the noises that became more frequent starting on Sunday...He has had little uncontrolled noises, like pain cries we called tehm...Yesterday we let the neurosurgeon know and he has a suspicion that it could be seizures. Carter had been set up to have an EEG next friday the 18th back in Omaha..this will look at his brain waves and see what is going on, if anything.
Okay, so as of 45 minutes ago, Carter threw up on me, 3 times! He has NO fever again..I really am scared out of my mind..I wish I had more insight to this...All I know is something is NOT right..He is not the same little boy..these last 5 weeks have been hell for him and for us. Are we being tested, and if so why cant I be tested physically instead of my Carter? I am thinking a 4th trip to Omaha may be happening in the approaching hours...which is not good cause we are going to be having a blizzard I am told.
Will write more when I feel like my head is wrapped around whatever is going on.
Jess
Okay, so as of 45 minutes ago, Carter threw up on me, 3 times! He has NO fever again..I really am scared out of my mind..I wish I had more insight to this...All I know is something is NOT right..He is not the same little boy..these last 5 weeks have been hell for him and for us. Are we being tested, and if so why cant I be tested physically instead of my Carter? I am thinking a 4th trip to Omaha may be happening in the approaching hours...which is not good cause we are going to be having a blizzard I am told.
Will write more when I feel like my head is wrapped around whatever is going on.
Jess
Monday, December 7, 2009
Carter's Pain 'cries'...
It is Monday December 7th and I am sitting here in my robe, blogging. Carter and Cody are still sleeping and Camden is on the floor as loud as can be. :)
I wanted to write about Carter. Yesterday he had a REALLY BAD day. It was one pain cry after another..Normoally he has a couple every day, but yesterday they had to top over 20 or more...not good...each time he would cry and make his little 'noise'...his eyes would swell up with tears on occasion..
I almost wanted to travel to Omaha last night...but we just decided we would watch him and leave early this morning. I always worry about my Carter..always.
Carter is by my side right now, just woke up..he's in good spirits...He wants to TOUCH my new laptop...imagine that...
So off we go to Omaha here in a little bit, he sees his neurosurgeon for a normal check up..we are actually wondering though if his shunt pressure needs decreased...when he had his last surgery they increased the flow by about 300%...ALOT. And his pain cries have become more frequent..We just want Carter to have a great quality of life...every day..to have a fair chance at things...I know there will always be worry, but we want to help his effort as much as possible..we're his parents..any parent would do the same. (well most..prob not any.).
I will report back hopefully later on today or tomorrow on whats happening.
Please be in prayer for Carter and his shunt.
Thanks.
I wanted to write about Carter. Yesterday he had a REALLY BAD day. It was one pain cry after another..Normoally he has a couple every day, but yesterday they had to top over 20 or more...not good...each time he would cry and make his little 'noise'...his eyes would swell up with tears on occasion..
I almost wanted to travel to Omaha last night...but we just decided we would watch him and leave early this morning. I always worry about my Carter..always.
Carter is by my side right now, just woke up..he's in good spirits...He wants to TOUCH my new laptop...imagine that...
So off we go to Omaha here in a little bit, he sees his neurosurgeon for a normal check up..we are actually wondering though if his shunt pressure needs decreased...when he had his last surgery they increased the flow by about 300%...ALOT. And his pain cries have become more frequent..We just want Carter to have a great quality of life...every day..to have a fair chance at things...I know there will always be worry, but we want to help his effort as much as possible..we're his parents..any parent would do the same. (well most..prob not any.).
I will report back hopefully later on today or tomorrow on whats happening.
Please be in prayer for Carter and his shunt.
Thanks.
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