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.
Saturday, November 28, 2009
Sickness in our house! :(
Ever since Carter's surgery two weeks ago, his throat has not been quite right...I blamed the intubating him...at first..Well, last saturday his cough clearly became worse and still a week later, today, is not better...I took him to the doctor on monday and they put him on a nebulizer and also z-pack...you would think that it would have worked by now, but he keeps spiking fevers and coughing ALOT. He is afraid of the nebulizer and if I even say the word, he says 'all done'..poor little guy has been traumatized and knows that this is medical equipment. :( He seems to do pretty good in the days, no fever or anything, but then he spikes at night...102 to 103..YIKES. I do not like that....tylenol, ibuprofen.
We had a great Thanksgiving, despite not being in tip-top shape...It was a good day. Cam had his first thanksgiving...wow, is he growing up fast! He is already 6 1/2 months! Hard to believe. Camden has been doing so much better on rice cereal, too...Learning how to swallow better and even opening his mouth for Cody or I! :) He has been really getting his 'butt up' when on the floor...and even goes on all 4's occasionally...which is really exciting to watch. I sometimes have to just let him get mad on the floor, cause thats when he does his best work, lol :)
Not too much is going on as of now...just praying that my boys can return to full health..its not fun having them cough all the time.
O, I should mention Cody and I did go out yesterday for Black Friday..not at 3-4-5 am like some people, but we still were blessed to find and get all the items we were looking for! Some of the items were the last one too! We are all done shopping, for each other and for others, what a great feeling that is! We both know what we are getting for each other for Christmas, but oh well..We should like the gift then!
More to come! Lata~ Jessica
We had a great Thanksgiving, despite not being in tip-top shape...It was a good day. Cam had his first thanksgiving...wow, is he growing up fast! He is already 6 1/2 months! Hard to believe. Camden has been doing so much better on rice cereal, too...Learning how to swallow better and even opening his mouth for Cody or I! :) He has been really getting his 'butt up' when on the floor...and even goes on all 4's occasionally...which is really exciting to watch. I sometimes have to just let him get mad on the floor, cause thats when he does his best work, lol :)
Not too much is going on as of now...just praying that my boys can return to full health..its not fun having them cough all the time.
O, I should mention Cody and I did go out yesterday for Black Friday..not at 3-4-5 am like some people, but we still were blessed to find and get all the items we were looking for! Some of the items were the last one too! We are all done shopping, for each other and for others, what a great feeling that is! We both know what we are getting for each other for Christmas, but oh well..We should like the gift then!
More to come! Lata~ Jessica
Monday, November 16, 2009
Yet another trip to Omaha..
Last wednesday morning started out rough. Carter was very clingy when he woke up and tired...Cody was getting ready for work..we didnt think too much into it..have to believe the best sometimes and not the 'what can happen'.. Well, like I said, Cody was getting ready for work and then Carter threw up..It was our worst nightmare, again. No fever, lathargic, clingy. My head was spinning...we just went through this exactly two weeks ago..it just can't be! Cody was so good because he said...we need to pack, we are going straight to Omaha this time. I was so very scared..What is going on with our Carter? Oh Lord, please help him.
We made our way to Omaha and got right into Midwest Neuroscience Center and Carter had a CT scan and then saw the doctor...the doctor did believe that it was his shunt again..by this time Carter had gotten sick a few more times while traveling but then starting acting a little better when we approached Omaha. Seeing this, the neurosurgeon wanted us to again take Carter to Nebraska Medical Center and have him admitted...he would be on the 'watch'. If he got worse, then surgery would be that night, if he stayed about the same then surgery was scheduled for the next day @ 1:00 pm. It seemed like forever away for me, a whole day, but beings Carter wasnt too bad (yet), surgery wasnt going to happen if he for sure didnt need it. Well, after we left the clinic Carter got sick right in the parking lot...My poor baby. I had no doubt whatsoever in my mind that Carter needed surgery. None. He kept getting sicker.
We got to the hospital and they tried to get an IV going for Carter cause he was on his way to dehydration..Well, they blew 5 veins trying to get one. Finally got one in his upper right arm, almost the arm pit I would say. Carter got worse as the day progressed. He ended up having surgery last thursday @ 1. The neurosurgeon told us that the catheter had gotten plugged...there are actually tiny holes on the sides of the catheter that allow for drainage..those were filled with brain tissue..They actually had to twist the catheter to get it out! They placed a new catheter in his brain which was shorter than the previous. Carter did well for a little while after this surgery...then in the wee morning hours of friday (around 4 am)..Carter threw up. Cody was thinking maybe it was because the nurses weren't keeping on top of his pain..they gave him morphine then...BUT Carter again threw up a little after six...I stayed in the Lead Center there (like a hotel on hospital campus, only could have one person stay the night in Carter's room)..I came into Carters room around 6:30 friday morning..and knew something was wrong by the look on Cody's face...and then I again witnessed Carter throwing up. This cant be happening! :( Along while ago, Dr. Hellbusch (Carter's amazing neurosurgeon) gave me his cell phone #. I quickly called it and told him that Carter was throwing up and we needed a CT scan sooner than 9 am...We ended up getting one at 7:00...At 7:30 friday morning we were told that Carter's ventricles were huge and that he would go back in for round #2 surgery at 9 am..Again I was scared but was glad atleast we didnt have to wait hours and hours.
Carter's second surgery last week went better than his first last week...He is now actually up to six surgeries in his life...all shunt related. Dr. Hellbusch actually placed a new & longer catheter back into the spot where it was before the prior day's surgery. He started coming back later that day...When I say coming back I mean acting himself...When Carter has fluid built up in his brain, all he does is sleep and get sick..he is not the same little boy..he NEEDS his shunt for quality of life. I am so thankful that we live in a time of technology where there are doctors who are able to help my son.
Carter's CT scan saturday morning looked drastically different than the one they did on friday morning..the fluid had decreased amazingly! We got discharged that morning and were all so happy and relieved to go home after being there for over 3 days. When we actually walked out into the parking garage there at the hospital, Cody said to Carter.."Your free!"....and Carter yelled "Your free!' SO excited!..He was back to out little spunky boy..he was eating, talking, playing like before...We didnt really want to see him or let him walk at the hospital..the floors are so hard...When we got home saturday, Carter began walking..It was so nice to see that...I was worried that surgery could make him regress...but clearly it didnt and I am so thankful.
Thank you everyone for all your prayers for our Carter...One thing ran through my head...I really dont know what we would do without Carter..he is the most amazing little boy and has taught me more than anyone so far...He is determined...he is a fighter...a trooper. I love him beyond words and always always always wish that I could take his place when he has to go through pain..no 2 year old should have to go through what he has..and six times so far...We just hope and pray that this shunt will last a long long time.
This friday is his 3rd birthday..I hope its a new beginning for him. I can't believe its been 3 years already! Happy Birthday to my baby!
Again, thanks for your prayers everyone!
We made our way to Omaha and got right into Midwest Neuroscience Center and Carter had a CT scan and then saw the doctor...the doctor did believe that it was his shunt again..by this time Carter had gotten sick a few more times while traveling but then starting acting a little better when we approached Omaha. Seeing this, the neurosurgeon wanted us to again take Carter to Nebraska Medical Center and have him admitted...he would be on the 'watch'. If he got worse, then surgery would be that night, if he stayed about the same then surgery was scheduled for the next day @ 1:00 pm. It seemed like forever away for me, a whole day, but beings Carter wasnt too bad (yet), surgery wasnt going to happen if he for sure didnt need it. Well, after we left the clinic Carter got sick right in the parking lot...My poor baby. I had no doubt whatsoever in my mind that Carter needed surgery. None. He kept getting sicker.
We got to the hospital and they tried to get an IV going for Carter cause he was on his way to dehydration..Well, they blew 5 veins trying to get one. Finally got one in his upper right arm, almost the arm pit I would say. Carter got worse as the day progressed. He ended up having surgery last thursday @ 1. The neurosurgeon told us that the catheter had gotten plugged...there are actually tiny holes on the sides of the catheter that allow for drainage..those were filled with brain tissue..They actually had to twist the catheter to get it out! They placed a new catheter in his brain which was shorter than the previous. Carter did well for a little while after this surgery...then in the wee morning hours of friday (around 4 am)..Carter threw up. Cody was thinking maybe it was because the nurses weren't keeping on top of his pain..they gave him morphine then...BUT Carter again threw up a little after six...I stayed in the Lead Center there (like a hotel on hospital campus, only could have one person stay the night in Carter's room)..I came into Carters room around 6:30 friday morning..and knew something was wrong by the look on Cody's face...and then I again witnessed Carter throwing up. This cant be happening! :( Along while ago, Dr. Hellbusch (Carter's amazing neurosurgeon) gave me his cell phone #. I quickly called it and told him that Carter was throwing up and we needed a CT scan sooner than 9 am...We ended up getting one at 7:00...At 7:30 friday morning we were told that Carter's ventricles were huge and that he would go back in for round #2 surgery at 9 am..Again I was scared but was glad atleast we didnt have to wait hours and hours.
Carter's second surgery last week went better than his first last week...He is now actually up to six surgeries in his life...all shunt related. Dr. Hellbusch actually placed a new & longer catheter back into the spot where it was before the prior day's surgery. He started coming back later that day...When I say coming back I mean acting himself...When Carter has fluid built up in his brain, all he does is sleep and get sick..he is not the same little boy..he NEEDS his shunt for quality of life. I am so thankful that we live in a time of technology where there are doctors who are able to help my son.
Carter's CT scan saturday morning looked drastically different than the one they did on friday morning..the fluid had decreased amazingly! We got discharged that morning and were all so happy and relieved to go home after being there for over 3 days. When we actually walked out into the parking garage there at the hospital, Cody said to Carter.."Your free!"....and Carter yelled "Your free!' SO excited!..He was back to out little spunky boy..he was eating, talking, playing like before...We didnt really want to see him or let him walk at the hospital..the floors are so hard...When we got home saturday, Carter began walking..It was so nice to see that...I was worried that surgery could make him regress...but clearly it didnt and I am so thankful.
Thank you everyone for all your prayers for our Carter...One thing ran through my head...I really dont know what we would do without Carter..he is the most amazing little boy and has taught me more than anyone so far...He is determined...he is a fighter...a trooper. I love him beyond words and always always always wish that I could take his place when he has to go through pain..no 2 year old should have to go through what he has..and six times so far...We just hope and pray that this shunt will last a long long time.
This friday is his 3rd birthday..I hope its a new beginning for him. I can't believe its been 3 years already! Happy Birthday to my baby!
Again, thanks for your prayers everyone!
Friday, October 30, 2009
An unexpected few days...
Its Friday and I am so glad to be home! We were in Omaha all day wednesday and thursday because of problems with Carter's shunt. Wednesday Carter woke up with nauseausness (sp)...He 'spit up' on his pillow...and I didnt think much of it cause he always has his hand in his mouth..I jsut figured he gagged himself or something. Well, he kept getting sick..the bile (yellow stuff) coming out of his stomach...he had NO temp...I usually like a temp cause then I know its most likely not his shunt..I quickly showered and kept watching him...he was very clingy to Cody and sleepy..and kept getting sick every 15-20 minutes...Not good..so scary. I quickly packed a bag about 10 to 8:00 and got the kids in the car and left. I called trimark on the way there to try and get an appt...they were full and told me 1:20...that seemed like a year away and told me to take him to ER...well ER has taken 3 hours in the past and I didnt want to wait if it was his shunt..I was upset! Well, my mom happened to have a doc appt at that time and she went and 'talked' to them..they ended up working Carter into the schedule..I was thankful. After Dr. Schultz saw Carter, he sent us on to Omaha..his CBC was normal, no temp, etc. We got to Omaha around 12:30 and they did a CT scan right away. We found out that his shunt was malfunctioning..again...Here comes surgery #5 I thought..I was sad and wished I could take Carters place. Dr. Hellbusch, Carters neurosurgeon scheduled surgery for the following day...We decided to admit Carter at UNMC and hydrate him right away, he was drinking anything...Carter started acting a little better later on, but still not quite himself. A CT scan was again performed the next morning..Dr Hellbusch came to see us about 20 minutes later and said, "the scan looks like it did before'...back in July....Carters shunt had started working and fluid started moving like it needed to! What a miracle! I was shocked and thankful! Wow. What happened is the shunt pressure needed increased a little because the catheter in his brain was callapsed down on by the ventricle where his fluid is..They adjusted the flow of the shunt and are hoping that this should help and he wont have this problem again. We were able to go home last night at 6 after Carter was playing and eating normally...I reminded myself to never take life for granted. I think I cried the whole way to Omaha..and was asking "God, why?"..Carters been through so much already and hes not even 3! I LOVE my ornery little boy...and I will take ornery over lathargic any day! So glad we are home!!
Wednesday, October 14, 2009
Its been a while
It has indeed been a while again since I have blogged. The last couple of weeks we have battled some colds and then yesterday we battled the flu (Carter did)...There really hasnt been too much going on. I am thinking we are on the road to recovery health wise..and am glad..Anytime Carter gets sick (throws up)...we have much more worry...He has a shunt and so one of the signs of a malfunctioning shunt it vomiting...and beings he has had 4 surgeries (all shunt related) we have good reason to worry! Carter is nearly back to his usual self tonight, I just pray its gone for good and doesnt make a second showing like I have heard it does!
We started playing Wii after a long absence and Carter is so much more observant that what we are doing ties in with the tv..its fun...he cheers us on and everything...tells us "nice approach" when golfing and more! :)
He has been of course doing lots of walking..I am excited for him to show off for his PT Barb, who hasnt seen him in a couple of weeks cause of sickness..I love watching him walk. He has also been requesting "Jammies" song (Go Fish) and "Monkey" song (five little monkeys jumping on a bed...) He knows practically all the words to these songs and many many more..Its truly incredible.
Camden is 5 months already! As I mentioned in facebook..hes no baby anymore...(okay, not completely!)..hes my little 18 pd 27 1/2 inch, rolling, cooing, smiling, laughing, cry if momma leaves the room, machine..I just love him..Did I mention his love of jumping? What would we do without his jumper!?
Anyways, not too much to report on. Normal stuff!
We started playing Wii after a long absence and Carter is so much more observant that what we are doing ties in with the tv..its fun...he cheers us on and everything...tells us "nice approach" when golfing and more! :)
He has been of course doing lots of walking..I am excited for him to show off for his PT Barb, who hasnt seen him in a couple of weeks cause of sickness..I love watching him walk. He has also been requesting "Jammies" song (Go Fish) and "Monkey" song (five little monkeys jumping on a bed...) He knows practically all the words to these songs and many many more..Its truly incredible.
Camden is 5 months already! As I mentioned in facebook..hes no baby anymore...(okay, not completely!)..hes my little 18 pd 27 1/2 inch, rolling, cooing, smiling, laughing, cry if momma leaves the room, machine..I just love him..Did I mention his love of jumping? What would we do without his jumper!?
Anyways, not too much to report on. Normal stuff!
Saturday, October 3, 2009
Getting more brave!
Carter hasnt been wanting to be in carts lately when we are shopping..He wants down so that he can work on walking... :) Its been great...Today at Sears he checked out lawn mowers, snow blowers and some refrigerators! LOL. We just kinda let him explore and broaden his horizon a little, within reason of course..
He started to get a cold this past wednesday..poor little guys nose is like a faucet....and so now his nose is sore...he doesnt want us to touch it! Benadryl gives him some relief at night but not really during the day (we dont want to mess up his sleep as it makes him very sleepy!)..I hope and pray he is about done with this cold..He did get a flu shot yesterday.
Today we got him a potty chair (portable)..and he went potty in it tonight for the very first time..he was really proud..Hes doing great going potty but I just need him to start saying "Mommy, I need to go potty!"...that would be awesome to have him start telling me.
Not too much to write about lately...Life has been pretty good.
He started to get a cold this past wednesday..poor little guys nose is like a faucet....and so now his nose is sore...he doesnt want us to touch it! Benadryl gives him some relief at night but not really during the day (we dont want to mess up his sleep as it makes him very sleepy!)..I hope and pray he is about done with this cold..He did get a flu shot yesterday.
Today we got him a potty chair (portable)..and he went potty in it tonight for the very first time..he was really proud..Hes doing great going potty but I just need him to start saying "Mommy, I need to go potty!"...that would be awesome to have him start telling me.
Not too much to write about lately...Life has been pretty good.
Wednesday, September 23, 2009
Learning Lots Right Side
Carter has really been learning so much lately...WOw does he amaze me lately. He is retaining what things are so much...He knows the words to so many songs, he has been walking so much now! And so much more steady than what he was before.
His swimming OT, Kari, said on Monday...that Carter is doing so well shes afraid she wont see him much longer...I told her I thought we could find things to 'work' on...But I gotta tell you as a mom how nice it is to hear that! I don't think Carter wants little brother Camden to pass him up so he has been working extra hard lately!
He was calling everything blue for a while...he now calls it either blue, green, or yellow! He can count to 14...He has been learning his ABC's (and is almost there!)...He is always singing the "5 Little Monkeys" song! Last night he was showing off for Grandma and Grandpa Struve by walking around the living room (back and forth, round and round!) while singing for them...He really was showing off!
He has had a fascination with being outside..Just this morning he said while getting out of bed " I wanna go outside!"...I head to tell him it was COLD and DARK and then change the subject!
Carter has been learning to go potty in the toilet since last monday also..so its been almost 10 days...He has been going for me lots...already 3 times today...I think it is saving on a few diapers too... I have to tehlp him button or snap (unsnap) and zip (unzip) his pants though...He may start getting more OT beings he still has trouble with turning lids or pulling off lids...opening drawers, etc...but this too doesnt worry me...I KNOW he will get there...He has been meeting his goals!
Also, I had him weighed at Child Health Specialty Clinic on Monday..he was 36.4 pounds...and so he has lost atleast 1.6 pounds ...I am happy about this..I really have been trying to feed him healthier! His sugars have been limited...More fruits, veggies, etc...The veggies sometimes have to be 'snuck' in...Anyways...He still has a few pounds that he could stand to drop...so I am going to keep helping him in the effort to revert the possible synthroid effects!
Thanks for reading!
His swimming OT, Kari, said on Monday...that Carter is doing so well shes afraid she wont see him much longer...I told her I thought we could find things to 'work' on...But I gotta tell you as a mom how nice it is to hear that! I don't think Carter wants little brother Camden to pass him up so he has been working extra hard lately!
He was calling everything blue for a while...he now calls it either blue, green, or yellow! He can count to 14...He has been learning his ABC's (and is almost there!)...He is always singing the "5 Little Monkeys" song! Last night he was showing off for Grandma and Grandpa Struve by walking around the living room (back and forth, round and round!) while singing for them...He really was showing off!
He has had a fascination with being outside..Just this morning he said while getting out of bed " I wanna go outside!"...I head to tell him it was COLD and DARK and then change the subject!
Carter has been learning to go potty in the toilet since last monday also..so its been almost 10 days...He has been going for me lots...already 3 times today...I think it is saving on a few diapers too... I have to tehlp him button or snap (unsnap) and zip (unzip) his pants though...He may start getting more OT beings he still has trouble with turning lids or pulling off lids...opening drawers, etc...but this too doesnt worry me...I KNOW he will get there...He has been meeting his goals!
Also, I had him weighed at Child Health Specialty Clinic on Monday..he was 36.4 pounds...and so he has lost atleast 1.6 pounds ...I am happy about this..I really have been trying to feed him healthier! His sugars have been limited...More fruits, veggies, etc...The veggies sometimes have to be 'snuck' in...Anyways...He still has a few pounds that he could stand to drop...so I am going to keep helping him in the effort to revert the possible synthroid effects!
Thanks for reading!
Monday, September 21, 2009
It feels like a monday...
Today feels like a monday...Maybe its the fact that I slept horribly last night or maybe cause its rainy and dreary outside this morning. Carter has been testing me this morning...hes been constantly getting in Camden's face..not giving him any space! I love my Carter but he is ORNERY this morning...! :)
We have been trying melatonin for Carter but it does not seem to be benefitting Carter at all...He still wakes up every night from what seems to be nightmares...It breaks my heart that he wakes up with horror in his eyes...This sounds horrible, but I still blame Omaha Children's Hospital after they let a student doctor try and do a spinal tap on Carter in January..he had 9- yes NINE pokeholes in his back when they brought him back...(they didnt put him out!-they held him down!)...More to this story ...but ever since this we havent gotten Carter to sleep well...I dont know what else we can do?...We keep thinking time will help but now its been 8 months and he doesnt seem to be sleeping any better.
Please pray for Carter. Thank you, Jessica
We have been trying melatonin for Carter but it does not seem to be benefitting Carter at all...He still wakes up every night from what seems to be nightmares...It breaks my heart that he wakes up with horror in his eyes...This sounds horrible, but I still blame Omaha Children's Hospital after they let a student doctor try and do a spinal tap on Carter in January..he had 9- yes NINE pokeholes in his back when they brought him back...(they didnt put him out!-they held him down!)...More to this story ...but ever since this we havent gotten Carter to sleep well...I dont know what else we can do?...We keep thinking time will help but now its been 8 months and he doesnt seem to be sleeping any better.
Please pray for Carter. Thank you, Jessica
Thursday, September 17, 2009
Leaps and Bounds
I wanted to write this morning to talk more about my Carter. Carter has began potty training this week and has done remarkably well! The first time I tried it took about ten minutes and finally he went after I started the water in the bathtub...Wow..I was in shock that he actually did it and boy did I praise him! :) Yesterday, Carter went potty for me twice! He went alot quicker also..a couple minutes each time...Some of my family got to witness him pottying yesterday! Daddy has yet to see Carter man go potty.
I know that Carters learning style could mean repetition more than the average child..so I figured it was time to start because Carter has sparked more of an interest in his...well you know. :)
Carter has also been doing more and more walking...seeming to show off more for me and for my family. IT is exciting! On Monday, he went from the living room recliner clear into his bedroom...yay! That is the furthest yet (that I have seen anyways!)..Way to go Carter man. Leaps and Bounds I tell you...Some people may call this ordinary, I call it extraordinary! Who knew..God is good and faithful and I thank HIM for all he does...I know he has an awesome plan for our Carter and that He is going to take Carter exactly where Carter should be in life.
I know that Carters learning style could mean repetition more than the average child..so I figured it was time to start because Carter has sparked more of an interest in his...well you know. :)
Carter has also been doing more and more walking...seeming to show off more for me and for my family. IT is exciting! On Monday, he went from the living room recliner clear into his bedroom...yay! That is the furthest yet (that I have seen anyways!)..Way to go Carter man. Leaps and Bounds I tell you...Some people may call this ordinary, I call it extraordinary! Who knew..God is good and faithful and I thank HIM for all he does...I know he has an awesome plan for our Carter and that He is going to take Carter exactly where Carter should be in life.
Thursday, September 10, 2009
After thoughts
It has been over a week now since we saw Dr. Wilkerson and the concern of his weight was raised. SInce this, Carter has dropped a pound or so. He was 38 lbs and I now have him weighing in at 36.5 pounds. My goal for Carter is 33 or even less. He is currently about at the 95% for weight and 3-4% for height. My goal would put him at around 65% if he can drop a few more pounds by November 20, his 3rd birthday. It probably needs to be gradual, obviously. Cody and I have really been limiting and watching what we give him. Chocolate milk (ovaltine) is now a "treat", not an everyday item that was occurring at times. I just want to have my Carter healthy. :)
Carter has been doing pretty well for Barb, his Physical Therapist lately. He showed off on Tuesday by sitting on the green ball, all by himself...and even bouncing on the ball and testing his own balance...he also did a little bit of walking for her. Its amazing how much better his balance has gotten lately. :)
Yesterday, Carters SLP (speech language) came and visited. Her name is Wendy and she only comes once or so every 2-3 months. Things went well with her visit considering she had a sheet and was giving Carter things to 'do'..to see if he understands,etc...to kind of evaluate where he is at and what things we need to work on. The main things we are going to work on is 'pointing'...asking Carter questions while looking at pictures or books and getting thought processes/functions more developed.
Yesterday we also had a respite representative come to the house and explain to me more in depth things regarding respite. It was a good meeting and I now have the forms to give to some choice ppl to watch Carter when I need help or time to do other things.
Today we get to stay home or possibly go get some groceries..I am just happy we have no appointments!
Carter has been doing pretty well for Barb, his Physical Therapist lately. He showed off on Tuesday by sitting on the green ball, all by himself...and even bouncing on the ball and testing his own balance...he also did a little bit of walking for her. Its amazing how much better his balance has gotten lately. :)
Yesterday, Carters SLP (speech language) came and visited. Her name is Wendy and she only comes once or so every 2-3 months. Things went well with her visit considering she had a sheet and was giving Carter things to 'do'..to see if he understands,etc...to kind of evaluate where he is at and what things we need to work on. The main things we are going to work on is 'pointing'...asking Carter questions while looking at pictures or books and getting thought processes/functions more developed.
Yesterday we also had a respite representative come to the house and explain to me more in depth things regarding respite. It was a good meeting and I now have the forms to give to some choice ppl to watch Carter when I need help or time to do other things.
Today we get to stay home or possibly go get some groceries..I am just happy we have no appointments!
Thursday, September 3, 2009
Interesting turn of events...
Okay, I have always known that Carter is a little "chubby". I am not going to tell you I don't think hes chubby...I have always leaned on the fact that he hasn't grown very much height wise. Over the last year, he has only grown 1 1/2 inches...While other 2 year (almost 3) olds are around 36-38 inches tall, Carter is only 34 1/2 inches tall...Last September (a whole yr ago) he was 33 inches...That is not very much growth. I should mention that when Cdoy was 3 yrs old he was 38 1/4 inches and 35 pounds. Carter is 37-38 pds.
It seems he has a few things working against him as far as weight goes. #1. He is just starting to walk (and its only here and there, not fully)...so Cody believes that his metabolism isnt getting up there like the avg. 2 year old who is running around. #2. He hasnt grown any length wise. #3. He was put on synthroid by an Omaha Endocrinologist and now our new Sioux Falls endo. took him off, not sure he needs this medicine. Synthroid side effects include weight gain, I did my research.
We saw Barb Wilkerson yesterday and she is concerned that he has gained 7 pounds since January...Really that is ALOT for a 2 year old, about 1 pound a month. Cody and I dont believe that we overfeed him like some may think, but we have decided to NOT give him any sweets...Natural sweets are fine...but no cookies, bars, chocolate, etc. at ALL. He has been on skim milk for the last year also so we cant cut that back. So please people, family members esp., NO SWEETS FOR CARTER (kindly!)..
I dont want Carter at risk for obesity or diabetes, etc. Barb Wilkerson was going to fax Carters new endocrinologist Carters growth chart so he can see how his weight has dramatically increased...Maybe we will hear back and this will start growth hormone treatments? What do I know, it could happen?!
If its not one thing its another...this week started with Carter SHOULD have made it on to the BI waiver and now new concerns of weight...Please pray for Carter. Thanks!
It seems he has a few things working against him as far as weight goes. #1. He is just starting to walk (and its only here and there, not fully)...so Cody believes that his metabolism isnt getting up there like the avg. 2 year old who is running around. #2. He hasnt grown any length wise. #3. He was put on synthroid by an Omaha Endocrinologist and now our new Sioux Falls endo. took him off, not sure he needs this medicine. Synthroid side effects include weight gain, I did my research.
We saw Barb Wilkerson yesterday and she is concerned that he has gained 7 pounds since January...Really that is ALOT for a 2 year old, about 1 pound a month. Cody and I dont believe that we overfeed him like some may think, but we have decided to NOT give him any sweets...Natural sweets are fine...but no cookies, bars, chocolate, etc. at ALL. He has been on skim milk for the last year also so we cant cut that back. So please people, family members esp., NO SWEETS FOR CARTER (kindly!)..
I dont want Carter at risk for obesity or diabetes, etc. Barb Wilkerson was going to fax Carters new endocrinologist Carters growth chart so he can see how his weight has dramatically increased...Maybe we will hear back and this will start growth hormone treatments? What do I know, it could happen?!
If its not one thing its another...this week started with Carter SHOULD have made it on to the BI waiver and now new concerns of weight...Please pray for Carter. Thanks!
Tuesday, September 1, 2009
One thing is for sure
They say nothing is certain but death and taxes..well I believe that nothing is certain but the worries that come being a parent. As a parent I want the very best for Carter and for Camden....so when something doesnt go as I would like its scary, sometimes sad. Yesterday Carter fell off the couch, today the same thing happened...When will this lil' boy learn? Doesn't he know how scary it is for us as parents...Its the not knowing. We have had three shunt malfunctions since his shunt was placed at 8 days old, and I don't want a fourth! Anytime he falls and hits the back of his head, Its nothing but worry until he starts acting like himself. His shunt is the reason he is alive and doing so well BUT his shunt is also the reason I get worked up when he falls...Its metal! I dont like that he has metal in his head, but what can I do...the shunt has definitely helped Carter beyond measure.
Ok, on to other things. Carter is doing AWESOME at walking..I absolutely LOVE to watch him walk...The look on his face is great, how he says 'good job' to himself when he is done, etc. Carter has so much determination and I love that in him, I think that has helped his journey so far. His speech is great too, I have heard this from a few people that last couple of days..which is reassuring. I have heard that it is so much clearer, etc. Well this morning I had a woman from Dickinson County DHS come and go over things with the Ill & Handicapp Waiver for Carter and also another lady from CHSC come and let me know some things that we are eligible for..Thank you Ladies!)) I did find out that Carter can have his speech evaluated at this point and see if he is in need of more therapy or not...and medicaid will pay for this...yay!
Camden has been learning how to scooch! (sp?) He tries to scooch down in his glider and also his car seat and smiles while doing it! Its funny...Carter is already teaching Camden things...
Anyways, Carter wants to go out on the deck so I better go!
Ok, on to other things. Carter is doing AWESOME at walking..I absolutely LOVE to watch him walk...The look on his face is great, how he says 'good job' to himself when he is done, etc. Carter has so much determination and I love that in him, I think that has helped his journey so far. His speech is great too, I have heard this from a few people that last couple of days..which is reassuring. I have heard that it is so much clearer, etc. Well this morning I had a woman from Dickinson County DHS come and go over things with the Ill & Handicapp Waiver for Carter and also another lady from CHSC come and let me know some things that we are eligible for..Thank you Ladies!)) I did find out that Carter can have his speech evaluated at this point and see if he is in need of more therapy or not...and medicaid will pay for this...yay!
Camden has been learning how to scooch! (sp?) He tries to scooch down in his glider and also his car seat and smiles while doing it! Its funny...Carter is already teaching Camden things...
Anyways, Carter wants to go out on the deck so I better go!
Monday, August 31, 2009
Results from Carters Endocrinology Appt.
Well, Dr. Karmazin just called me back with Carter's blood results from blood taken on the 20th. I was a little nervous at first to actually hear his voice, not one of his nurses, but maybe this is standard at their office? Carters IGF1 (growth hormone) came back at a 35..Normal zone for his age should be between 30-122..so he is on the low end but doesnt need to start growth hormone shots at this point. He will be rechecked in February when we go back for a follow up appt.
Dr. Karmazin wants to stop Carters thyroid medicine right now also. He says that Carters thyroid issue may not be the same type as mine. His issue may come because his central pituitary gland may not be sending enough signal to his brain. Carter will have to be re-checked in 2 months for this.
So, overall the news we got from the Dr. is positive..Carter is only 2 (almost 3!) and so we have plenty of time to see if he grows. His growth potential based on bone age is also good.
Thats about all I know, more later.
Dr. Karmazin wants to stop Carters thyroid medicine right now also. He says that Carters thyroid issue may not be the same type as mine. His issue may come because his central pituitary gland may not be sending enough signal to his brain. Carter will have to be re-checked in 2 months for this.
So, overall the news we got from the Dr. is positive..Carter is only 2 (almost 3!) and so we have plenty of time to see if he grows. His growth potential based on bone age is also good.
Thats about all I know, more later.
Wednesday, August 26, 2009
What to say?
We are home today for the second day in a row..kind of nice..and its beautiful outside! We have no ac running and its about 68 degrees! Carter and Camden had a nice nap...Camden is a growing boy and has been napping more lately...I measured him monday and he is 25 3/4 inches! This puts him at 97% on the charts for height (weight is also at 97% based on 16.5 pds)...What a bigga boy!
Carters weight is up to that point also but the concerning part is that Carters height is only between the 3-4% mark...The thyroid condition is being further investigated by his new wonderful doctor but also checking all the growth hormone 'stuff' in his blood...I am hoping to hear back with news sooner than later...Its been nearly a week and they told me a week and a half! I dislike having to be patient! (Patience is sometimes where I lack!)
Not too much has happened since I last blogged...But I did want to share that Carter showed off some for his PT! Yay Carter! He did some walking for Barb...She kept having him do walking exercises...sometimes he gets in a hurry...but he did great today! Also did some in place marching (like a soldier) for her...I got a call from Dickinson County DHS---Carter has been accepted for the Ill and Handicapped Waiver...after reading some about this online, I have mixed emotions...It actually makes me feel sad because Carter is not MR...I like the waiver for the fact that it has automatic Medicaid..I HATE the waiver for the fact that I feel like my son is smarter and is going to overcome this 'disabled' status...You know, I would rather have a son running around and bills to pay than financial assistance and Carter not walking...I hope and pray I can find some peace on this.
In a mothers eyes (mine), Carter is BLESSED, HAPPY, COMEDIC, DETERMINED, INDEPENDENT, etc! My prayer is that this next year he could be filled with so much more knowledge to prepare him for preschool one year from now. ..I might check into him starting January 2011 instead of Fall 2010..if its possible...that way he will be 4...? Like I said, if its possible.
Will blog more when I hear the blood results from his pediatric endocrinologist...Maybe still this week!?
Thanks! Jessica
Carters weight is up to that point also but the concerning part is that Carters height is only between the 3-4% mark...The thyroid condition is being further investigated by his new wonderful doctor but also checking all the growth hormone 'stuff' in his blood...I am hoping to hear back with news sooner than later...Its been nearly a week and they told me a week and a half! I dislike having to be patient! (Patience is sometimes where I lack!)
Not too much has happened since I last blogged...But I did want to share that Carter showed off some for his PT! Yay Carter! He did some walking for Barb...She kept having him do walking exercises...sometimes he gets in a hurry...but he did great today! Also did some in place marching (like a soldier) for her...I got a call from Dickinson County DHS---Carter has been accepted for the Ill and Handicapped Waiver...after reading some about this online, I have mixed emotions...It actually makes me feel sad because Carter is not MR...I like the waiver for the fact that it has automatic Medicaid..I HATE the waiver for the fact that I feel like my son is smarter and is going to overcome this 'disabled' status...You know, I would rather have a son running around and bills to pay than financial assistance and Carter not walking...I hope and pray I can find some peace on this.
In a mothers eyes (mine), Carter is BLESSED, HAPPY, COMEDIC, DETERMINED, INDEPENDENT, etc! My prayer is that this next year he could be filled with so much more knowledge to prepare him for preschool one year from now. ..I might check into him starting January 2011 instead of Fall 2010..if its possible...that way he will be 4...? Like I said, if its possible.
Will blog more when I hear the blood results from his pediatric endocrinologist...Maybe still this week!?
Thanks! Jessica
Friday, August 21, 2009
Our trip to Sioux Falls
The trip was overall a really good trip..Mom and I got to do a little shopping so that was fun. Carters appointment with his new pediatric endocrinologist was much better than my mind thought it was going to be...I was actually getting anxiety right before his appt because his past doctor visits have been very traumatizing for him. Dr. Karmazin is an amazing doctor..he played with Carter first and earned Carters trust before he started checking him...they have child well life (or something like that) that came in and played with Carter and all that..His nurse Sarah played with bubbles with Carter (Carter loves bubbles)...and made the weighing and blood pressure check so much less stressful..As far as what we found out...Carter may not have a thyroid condition like me...he may have one, but for different reasons...we will know in a week or two...It is extremely rare for a boy his age to have a thyroid condition and so the doctor is checking everything..They did draw blood from Carter yesterday...they will check thyroid functions and all things related to growth hormone deficiency...they said it should take a week and a half to get some of these results back because they are sent all the way to california. If something obvious is found than growth hormone shots may start sooner, but if not (this may NOT be grwoth hormone) than his next appt is 6 months from now. I should say that Carters bone age in January (he would have been 26 months) was that of a 12 month old...and the other doctor in Omaha read his bone age as that of a 6 month old ( i guess!?!)...so potential to grow is still great I guess...this means according to his bones, hes got much growth ahead of him.
Carter has been doing much more walking already today! It is sooooooo exciting!
More to come!
Carter has been doing much more walking already today! It is sooooooo exciting!
More to come!
Thursday, August 20, 2009
Off to Sioux Falls
My mom and I are traveling to Sioux Falls this morning with Carter and Camden..Carter has a doctor appt with a Pediatric Endocrinologist @ 2 today...I am hoping that we get some more answers...I am really hoping everything checks out okay, but if not I want to get started on remedies for Carter.
I am writing this morning to tell all that Carter walked the furthest distance yet yesterday...I am guessing 25 steps! It was so awesome and I wish that I had caught it on camera..oh well...he is walking more frequently so I will get him another time...
I will post more later when we come home and let everyone know how the appt. went!
I am writing this morning to tell all that Carter walked the furthest distance yet yesterday...I am guessing 25 steps! It was so awesome and I wish that I had caught it on camera..oh well...he is walking more frequently so I will get him another time...
I will post more later when we come home and let everyone know how the appt. went!
Tuesday, August 18, 2009
When things seem bad...
I tell myself that they could always be worse...this morning I was in my room taking pictures of items to sell on EBAY and I come back into the living room to find Carter had Camdens mylacon bottle and was dipping it into my coffee and licking it off...Quite cute it was and I felt a relief..Thank the Lord there wasnt coffee spilled anywhere, just a few drips..It could have been worse! And yes, Carter likes coffee, he thinks that anything in a cup or mug is coffee! He says Nummy!
Right now at this point in time, I am really working on teaching Carter his colors and then also "who is this?", in pictures. I want him to be able to tell me all family members, that is my goal. So far he has Grandma Glenda and Camden down. As far as colors go, he really likes blue and calls most things blue if I ask him what color it is. Occasionally he says yellow or green....so we are really working on colors..I have to remind myself to be more descriptive for Carter's benefit. He is coming along with his speech, its really progressed...An example, "Do gan (Do it again)" he now says "Do Again", so that is good. "Love you" is now "I love you."and he can count all the way up to 14, sometimes higher.
His walking...I think its really progressing. I am the one that sees him the most and his abilities. He is trying alot more than he used to. He now walks short distances (5 feet or less) without blinking..he knows he can walk that far without problems..if he has further to go, he gets on his knees right away...sometimes he will start walking and then drop to his knees after maybe 10 steps. We can tell hes coming along..Cody says that Carter must be feeling a little more comfortable with his skills cause now he stands and tries to turn his direction..which is new.
As my mom says, Carter is here with us! How amazing is this little man! Which when I heard my mom tell someone this yesterday, a flood gate of memories opened for me. When I was 24 wks pregnant, we were given all this bad news...My baby (Carter) may not walk, talk, or do much of anything. I remember them asking me if I wanted to "go through with this"...3 times they gave me an option of aborting Carter...For a second it actually processed through my brain..but it is not my right to take his life..If the good Lord kept his lungs full of oxygen, his heart beating, etc...he had a purpose..Carter HAS a purpose in life and one day will have a heck of a testimony! It upsets me to think of life without my Carter..He brings sooooooo much joy to my life and because of him I feel much more compassion to others..My eyes are opened wider because of what we have been through so far with Carter.
Just a month ago I had a woman tell me (I will call her anonymous) that things will "Always be hard for Carter"...It greatly angered and upset me...How does she know this? She has only heard hearsay..She doesnt know my Carter, only met him a couple of times briefly. She has no idea about ACC and how different it is for each person..My main thought..I am not going to have Carter growing up and hearing about things that he cannot do..He doesnt know any different at this point..and in my opinion there is nothing wrong with him..God made us all different and unique...Carter is happy, healthy, and learning...learning things every day..His brain is really working hard...I love the progress that I am seeing!
Right now at this point in time, I am really working on teaching Carter his colors and then also "who is this?", in pictures. I want him to be able to tell me all family members, that is my goal. So far he has Grandma Glenda and Camden down. As far as colors go, he really likes blue and calls most things blue if I ask him what color it is. Occasionally he says yellow or green....so we are really working on colors..I have to remind myself to be more descriptive for Carter's benefit. He is coming along with his speech, its really progressed...An example, "Do gan (Do it again)" he now says "Do Again", so that is good. "Love you" is now "I love you."and he can count all the way up to 14, sometimes higher.
His walking...I think its really progressing. I am the one that sees him the most and his abilities. He is trying alot more than he used to. He now walks short distances (5 feet or less) without blinking..he knows he can walk that far without problems..if he has further to go, he gets on his knees right away...sometimes he will start walking and then drop to his knees after maybe 10 steps. We can tell hes coming along..Cody says that Carter must be feeling a little more comfortable with his skills cause now he stands and tries to turn his direction..which is new.
As my mom says, Carter is here with us! How amazing is this little man! Which when I heard my mom tell someone this yesterday, a flood gate of memories opened for me. When I was 24 wks pregnant, we were given all this bad news...My baby (Carter) may not walk, talk, or do much of anything. I remember them asking me if I wanted to "go through with this"...3 times they gave me an option of aborting Carter...For a second it actually processed through my brain..but it is not my right to take his life..If the good Lord kept his lungs full of oxygen, his heart beating, etc...he had a purpose..Carter HAS a purpose in life and one day will have a heck of a testimony! It upsets me to think of life without my Carter..He brings sooooooo much joy to my life and because of him I feel much more compassion to others..My eyes are opened wider because of what we have been through so far with Carter.
Just a month ago I had a woman tell me (I will call her anonymous) that things will "Always be hard for Carter"...It greatly angered and upset me...How does she know this? She has only heard hearsay..She doesnt know my Carter, only met him a couple of times briefly. She has no idea about ACC and how different it is for each person..My main thought..I am not going to have Carter growing up and hearing about things that he cannot do..He doesnt know any different at this point..and in my opinion there is nothing wrong with him..God made us all different and unique...Carter is happy, healthy, and learning...learning things every day..His brain is really working hard...I love the progress that I am seeing!
Friday, August 14, 2009
Wow, what a night
Last night scared Cody and I just a bit..Carter fell and hit his head on the know of our end table..the blood was dripping down by his shunt, AHH! Once we calmed ourselves, we blotted it and found that the wound was above his ear and very small, not on or too close to his shunt like we were afraid of...Thank the Lord, boy was that scary!
Carter has discovered that he loves this cartoon or program called Sid the Science Kid...he has never really paid attention to anything on tv, except wanting music to play (Serious XM The Message!)..and so for him to sit down and watch the tv is a first for us...sure he has looked at the tv, but never sat and watched! I'm excited to maybe introduce some of the learning dvds I have now! This show features dancing which is why I think he watches, but is very informative..Yesterday they talked about the importance of brushing your teeth and today they are talking about exercising and eating healthy.. I am glad to see his attention span is there, as preschool is a year away! AHH! AEA has been wanting me to start Carter this January but Cody and I have decided given the circumstances we are waiting another full year, I mean he still wont even be 4 a year from now..I didnt start til I was 4 and I was walking, etc.!!!!!
We purchased a double stroller last night and are hoping we can get our single jogger sold. We like our jogger stroller so much that the new one we purchased is exactly like our old one, everything is the same except that its double! I am so excited as this will make me taking the kids for walks so much easier when Cody is working...One stroller to look after and Cody can still go for runs with Carter when he wants to. It is InStep brand and I recommend it! The dealer we bought it thru is actually the same dealer that we got our bike trailer from..
I should mention that Carter will be getting in to a different pediatric endocrinologist next thursday in sioux falls, I am switching! He had seen a doctor from Omaha but this doctor didnt work for us, the communication was hard and he was not proactive..Ugh! A friend from high school goes to this other doctor in sioux falls and highly recommends him. Carter has a thyroid issue, so he has been on synthroid since March. He didnt grow much the last year to year and a half and so they are monitoring him to make sure he doesnt have growth hormone deficiency. If he does then we will have to start a daily shot to get him to grow and keep up to his peers. I pray he doesnt have this as its an every day thing...but if he does then I do want to start treatment. Children with ACC are more prone to having issues of thyroid/growth because the pituitary gland is located right next to the corpus callosum and so if the corpus callosum is missing often the gland is not always functioning properly. Thyroid in our case though is hereditary as me, mom, sister, cousin, aunt all are on medicine for this.
More to come.
Carter has discovered that he loves this cartoon or program called Sid the Science Kid...he has never really paid attention to anything on tv, except wanting music to play (Serious XM The Message!)..and so for him to sit down and watch the tv is a first for us...sure he has looked at the tv, but never sat and watched! I'm excited to maybe introduce some of the learning dvds I have now! This show features dancing which is why I think he watches, but is very informative..Yesterday they talked about the importance of brushing your teeth and today they are talking about exercising and eating healthy.. I am glad to see his attention span is there, as preschool is a year away! AHH! AEA has been wanting me to start Carter this January but Cody and I have decided given the circumstances we are waiting another full year, I mean he still wont even be 4 a year from now..I didnt start til I was 4 and I was walking, etc.!!!!!
We purchased a double stroller last night and are hoping we can get our single jogger sold. We like our jogger stroller so much that the new one we purchased is exactly like our old one, everything is the same except that its double! I am so excited as this will make me taking the kids for walks so much easier when Cody is working...One stroller to look after and Cody can still go for runs with Carter when he wants to. It is InStep brand and I recommend it! The dealer we bought it thru is actually the same dealer that we got our bike trailer from..
I should mention that Carter will be getting in to a different pediatric endocrinologist next thursday in sioux falls, I am switching! He had seen a doctor from Omaha but this doctor didnt work for us, the communication was hard and he was not proactive..Ugh! A friend from high school goes to this other doctor in sioux falls and highly recommends him. Carter has a thyroid issue, so he has been on synthroid since March. He didnt grow much the last year to year and a half and so they are monitoring him to make sure he doesnt have growth hormone deficiency. If he does then we will have to start a daily shot to get him to grow and keep up to his peers. I pray he doesnt have this as its an every day thing...but if he does then I do want to start treatment. Children with ACC are more prone to having issues of thyroid/growth because the pituitary gland is located right next to the corpus callosum and so if the corpus callosum is missing often the gland is not always functioning properly. Thyroid in our case though is hereditary as me, mom, sister, cousin, aunt all are on medicine for this.
More to come.
Thursday, August 13, 2009
Where do I start? An introduction!
Wow- where do I start? I mean really? I have been wanting to do a blog for quite some time now, just haven't gotten around to it. Well here it goes!
First off I want to share how excited I am to do this blog, not only will it be another way for me to look back and remember but it is such a wonderful way to share all the new and exciting things happening in our family!
Cody and I have been happily married for five years this year and we have two little boys which bring so much joy into our lives..I get the privelege of staying home as my boys grow and couldnt imagine not being here sharing in every day with them. Cody works for Meridian Mfg in Storm Lake and does inside sales..I am thankful that he has such a great job that gives us this opportunity of me staying home.
Carter- he is the main reason I wanted to do a blog. I want everyone to know where he is at in his physical motor abilities, what he is doing one day that he couldnt do the day before and such. Well now we have Camden as well! I get to blog about the two best boys in the world, my boys!
Okay- lets start from the beginning with Carter. Carter was born November 20, 2006 and was a miracle from day one. We knew he was going to be special and boy he is special (he is now our little comedian!) Carter was born with a diagnosis of A-CC (Agenesis of the Corpus Callosum) which means he was born without the middle part of his brain which connects the left and right halves of the brain. We were told this could be anywhere from very moderate to very severe on his learning. I joined an online group the moment I found out my baby had this to try and learn anything and everything I could about what this meant for him and us. As you know, when you read online posts these are very different people and so at that moment I decided that Carter will be just as God wants him to be and reading about others will only make things more uncertain. Carter is 2 yrs 9 mths and has been walking anywhere from 5-17 steps at a time now..some people may think this is not a big deal, but to us it is a BIG deal! I tell myself that we all have abosolutely no idea how it is for Carter..we were all born with a corpus callosum and did not have fluid on the brain like Carter. We have not had 4 brain surgeries thus far! The main thing is, is that Carter is progressing and all in God's timing, not ours. For those of you who dont really know Carter, he is a happy, strong willed, determined and funny little hunk of a boy! I will blog more in the future on a regular bases on what Carter is doing (and it shouldnt be as long as this is!)
Camden..My baby boy Camden..First off Carter loves his little brother Camden and says "Baby brother!--Cam-ba-den" which is the cutest..Carter smiles at Camden and Cam smiles back which then causes Carter to say "Smile!" to his brother. Camden was born May 13, 2009 and so today is his 3 month birthday! He is a little brute weighing in today at 16 pds and 25 1/2 inches long which the doctor tells me is at the top of the charts (go figure! his daddy was the same size at this age and look at him now!) Camden has rolled for me 5x tummy to back..he likes to jump in his rainforest jumparoo and also likes to sit up in his bumbo. He smiles all the time and coos appropriately. He is already wearing 6 month clothing and fills some of them out quite well! I have been fortunate to be able to breast feed him and plan on doing this til it just doesnt work anymore (my goal is a yr). I wasnt able to feed Carter this way and find that this is the easiest way in the world, there are no bottles to clean, no milk to warm, nothing to pack for him when we go places, etc!
I await the day when Carter and Camden are able to play together and walk together hand in hand..I will be misty eyed for sure..What else is new though...? I am always misty eyed and consider any accomplishment a milestone!
More blogging to come..thanks for reading!
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