Our Dr.called us back yesterday afternoon. Cade was of course at school so that left me taking the call and trying to get all the information. He started out by saying that there was no tumor or sign of stroke. At that point I was unaware we were worried about that, but at the same time relieved that it wasn't that. It's not the tethered spinal cord or pedicles (pinched nerve). What the MRI showed was a string of cells showing up with an abnormal intensity from the anterior of the spine down to the lumbar (from top to bottom) on both the left and right sides. It was showing a brighter signal where it should have been grey on the MRI. After speaking with 2 radiologists and 3-5 other Dr.'s (one being a 70 year old Dr., who maybe affiliated with UT Medical) and none of them know what it is exactly. Moving from here we need to get 2 additional MRI's. One of his spine again this time with contrast and then also one of his brain to see if the string of cells continues into his brain. The spine MRI will take 1 hr 45 min - 2 1/2 hrs and the brain MRI will take 1 hr so depending how the anesthesiologist feels about Tacen being put under for that long will determine if we have to go in for two separate visits or just one. We are really impressed with Dr. Fulton. He's been great so far! He told us if Tacen has a relapse he wants to see him. He also asked how long this had been happening and we said about 1 year. He said that because it's been happening so long, that helps rule out a lot of the "bad" things because he would have gotten sick and stayed sick.
Then last night Cade was working on some flash cards and I was getting Daxon ready for bed when my phone rang. When I looked at my phone I thought the number looked similar to the one Dr. Fulton called from earlier that day. It was 7:30pm so I thought it can't be him. I answered it and sure enough it was him. He wants to know if Tacen had his polio vaccination. I haven't been able to get that information from our old Dr. yet, but I will soon. He said that his symptoms mirror some of those of polio, but that it doesn't last. It was nice that he called because Cade was able to talk to him and get the answers to questions he was having answered. Since Cade knows the medical lingo better and knows what to ask better.
There is also a possibility it may be a genetic thing. However, we really won't know much more until the MRI's. They are meeting with other Dr's at Le Bonheur on Thursday to discuss Tacen's case and see if anyone else has seen this.
So at this point that's what we know. Not a lot unfortunately. We are extremely thankful that our Dr. is working so hard to help our little Tacen. He told Cade that our son is going to be on his mind until they figure it out. We are also trying to keep a positive attitude until given a reason to think otherwise. We'e bummed out that this won't be a quick fix, but we are hoping that we'll get to the bottom of it eventually.
Shining Star
Tuesday, September 11, 2012
Wednesday, September 5, 2012
MRI
Miraculously they were able to get an MRI scheduled. I got a phone call Thursday morning saying they needed some more information regarding Tacen's Sept. 5th appointment. I said can you please tell when what appointment you're talking about. They told me that it was his MRI. I didn't complain because that was 3-4 weeks sooner than expected. After I gave the gentlemen my information I asked him if he could tell me the time. He then transferred me over to radiology and they told me it was at 7:15 am. I asked if we needed to arrive early and they said no just be there at 7:15am. We were stoked and planned accordingly.
Saturday we got a letter in the mail from the neurology department saying our appointment was at 6:30am and if we were more than 15 minutes late that would result in rescheduling. So we replanned and planned to be there at 6:30
Now to today. Cade and I got up at 5am got things ready, I got Daxon up to eat and then after we had everything loaded and ready to go we got Tacen up and put him in the car knowing he wouldn't be able to eat or drink anything. We left our house at 5:45am. We arrived at Radiology at 6:25am. We got all checked in and they took us back. We were in our room when a nurse came and said that we were a little early and they hadn't forgotten about us, but they'd have to take the child on the schedule before us back. Long story short with this part we weren't supposed to be there until 7:15am, our scan wasn't scheduled until 8:15 and they didn't even get it started until 9am. Poor Tacen.
So we hung out in our room for quite some time, trying to keep Tacen distracted. They needed to do an IV before taking him back to be put under and do the MRI. They came in and after trying 6 times, they couldn't get it. Poor Tacen was a total trooper. He held quite still, but cried a lot. We felt terrible for him. As usual he hated having the band aide on most of all. After 6 failed attempts 2 in each hand and 2 in his left arm, they decided it would be better to give him a little gas, then put the IV. We agreed, Cade went back with him and that went quickly. Then we waited for an hour. They told us they'd call when he was out. They called and said he was out and already awake. We felt bad, because we wanted to be there when he woke up. I guess normally they take a while to come out of anesthesia, but he woke right up as they were taking his vitals. He was roaring to go. They still had a blood pressure cuff on his leg and the IV in his foot and he wanted those gone. Then they put a bandage on his foot and he wanted that off. He walked (quite wobbly) out to the stroller and was ready to go.
He did so well today. He didn't have any problems besides being a little tipsy. He was a live wire all day. He was running around, climbing, getting into things, normal Tacen. They said it would take up to 24 hrs for the scans to be read. Unfortunately, our Dr. is out of the office until next week, so we are figuring the earliest we'll hear will be Monday. More to come...
Ps as a side note. We were driving home after the MRI and we were trying to find some place we could get some apple juice for Tacen. Cade was driving and I saw a pedestrian almost cross the road, I looked up and noticed the light was red and Cade kept driving. Normally I would have said something, but I didn't and Cade drove right through. Then I looked over and there was a cop sitting right there. Only in Memphis, would you see a cop watch you run a red light and not get a ticket...Needless to say we were worn out at that point of the day.
Saturday we got a letter in the mail from the neurology department saying our appointment was at 6:30am and if we were more than 15 minutes late that would result in rescheduling. So we replanned and planned to be there at 6:30
Now to today. Cade and I got up at 5am got things ready, I got Daxon up to eat and then after we had everything loaded and ready to go we got Tacen up and put him in the car knowing he wouldn't be able to eat or drink anything. We left our house at 5:45am. We arrived at Radiology at 6:25am. We got all checked in and they took us back. We were in our room when a nurse came and said that we were a little early and they hadn't forgotten about us, but they'd have to take the child on the schedule before us back. Long story short with this part we weren't supposed to be there until 7:15am, our scan wasn't scheduled until 8:15 and they didn't even get it started until 9am. Poor Tacen.
So we hung out in our room for quite some time, trying to keep Tacen distracted. They needed to do an IV before taking him back to be put under and do the MRI. They came in and after trying 6 times, they couldn't get it. Poor Tacen was a total trooper. He held quite still, but cried a lot. We felt terrible for him. As usual he hated having the band aide on most of all. After 6 failed attempts 2 in each hand and 2 in his left arm, they decided it would be better to give him a little gas, then put the IV. We agreed, Cade went back with him and that went quickly. Then we waited for an hour. They told us they'd call when he was out. They called and said he was out and already awake. We felt bad, because we wanted to be there when he woke up. I guess normally they take a while to come out of anesthesia, but he woke right up as they were taking his vitals. He was roaring to go. They still had a blood pressure cuff on his leg and the IV in his foot and he wanted those gone. Then they put a bandage on his foot and he wanted that off. He walked (quite wobbly) out to the stroller and was ready to go.
He did so well today. He didn't have any problems besides being a little tipsy. He was a live wire all day. He was running around, climbing, getting into things, normal Tacen. They said it would take up to 24 hrs for the scans to be read. Unfortunately, our Dr. is out of the office until next week, so we are figuring the earliest we'll hear will be Monday. More to come...
Ps as a side note. We were driving home after the MRI and we were trying to find some place we could get some apple juice for Tacen. Cade was driving and I saw a pedestrian almost cross the road, I looked up and noticed the light was red and Cade kept driving. Normally I would have said something, but I didn't and Cade drove right through. Then I looked over and there was a cop sitting right there. Only in Memphis, would you see a cop watch you run a red light and not get a ticket...Needless to say we were worn out at that point of the day.
Wednesday, August 29, 2012
Tuesday and Tace
Tuesday(8/28/12) was official doctor day. Cade and I wanted to go to a dermatologist to get an overall check. With me being so fair skinned I try to stay on top of this. Since I had met my deductible having Daxon I figured why not. Cade had never been so we thought it might be wise for him to have an overall check as well. We checked out great. I had a little wart burned off and that was it.
Then in the afternoon we had Tacen's appointment with the neurologist. We'd been waiting since July 27th to get in. Over a month! We left early since we'd never been there and we knew we were supposed to arrive early. It was a good thing because it took us a little while to locate parking and then go through the maze to get into the building.
Here's what we found out! Dr. Fulton checked Tacen over. He checked his reflexes, and muscle tone all over his body. Then he watched him walking and moving around. We'd taken a new hot wheels car in the diaper bag for when we got out, but he found it and wanted to play with it. It ended up working out great because it distracted him and he played just like he normally would. The Dr. said neurologically everything checked out great and that it thought his hindrance to walking could be 1 of 2 things. He either has a tethered spinal cord (which means in the womb his spinal cord never detached from his spine) or his pedicles of his lower lumbar are too close together (meaning his spine pedicles are causing a pinched nerve). We won't know for sure until we get an MRI which unfortunately we won't be able to get for 4-5 weeks. There are only two machines in the Memphis area that service children.
If he has a tethered spinal cord it may be able to be surgically detached. However, the cord looks very similar to the nerves for his legs and if cut wrong could cause paralysis. There is not 100% chance this will be operable. If not than basically it would probably be something he'd have to learn to live with. If it is operable there is a specific spine dr we will see. Dr. Fulton said that he is the only guy he would let operate on him and that he was the guy we would see for this. That is comforting. All he does is work with the spine. The better situation is the spinal pedicles. It sounds like the surgery is easier to do. There is also a possibility that it is neither of these and then we're back to the drawing board. Yet, we won't have any idea until the MRI which he will have to be sedated for. So yet again we sit and wait.
We really want to get this figured out and taken care of for Tacen, but more than that we just want everything to be alright. Its hard to hear that your child has something that might need surgery. It scares me at the thought of losing him. We are trusting in the drs though and asking lots of questions along the way! We are also praying that all will go well. Stay tuned...
PS here's a few more things I wanted to remember about Tacen at his appointment. When Dr. Fulton checked his knee reflexes he picked up the hammer afterwards and tried to check them himself. Dr Fulton was looking him over and asked him to sit in his lap, so he did. He also kept dropping his car behind the dr. table and saying, "Uh, Oh!" a usual at dinner time. The Dr. soon figured out this was a game.
Then in the afternoon we had Tacen's appointment with the neurologist. We'd been waiting since July 27th to get in. Over a month! We left early since we'd never been there and we knew we were supposed to arrive early. It was a good thing because it took us a little while to locate parking and then go through the maze to get into the building.
Here's what we found out! Dr. Fulton checked Tacen over. He checked his reflexes, and muscle tone all over his body. Then he watched him walking and moving around. We'd taken a new hot wheels car in the diaper bag for when we got out, but he found it and wanted to play with it. It ended up working out great because it distracted him and he played just like he normally would. The Dr. said neurologically everything checked out great and that it thought his hindrance to walking could be 1 of 2 things. He either has a tethered spinal cord (which means in the womb his spinal cord never detached from his spine) or his pedicles of his lower lumbar are too close together (meaning his spine pedicles are causing a pinched nerve). We won't know for sure until we get an MRI which unfortunately we won't be able to get for 4-5 weeks. There are only two machines in the Memphis area that service children.
If he has a tethered spinal cord it may be able to be surgically detached. However, the cord looks very similar to the nerves for his legs and if cut wrong could cause paralysis. There is not 100% chance this will be operable. If not than basically it would probably be something he'd have to learn to live with. If it is operable there is a specific spine dr we will see. Dr. Fulton said that he is the only guy he would let operate on him and that he was the guy we would see for this. That is comforting. All he does is work with the spine. The better situation is the spinal pedicles. It sounds like the surgery is easier to do. There is also a possibility that it is neither of these and then we're back to the drawing board. Yet, we won't have any idea until the MRI which he will have to be sedated for. So yet again we sit and wait.
We really want to get this figured out and taken care of for Tacen, but more than that we just want everything to be alright. Its hard to hear that your child has something that might need surgery. It scares me at the thought of losing him. We are trusting in the drs though and asking lots of questions along the way! We are also praying that all will go well. Stay tuned...
PS here's a few more things I wanted to remember about Tacen at his appointment. When Dr. Fulton checked his knee reflexes he picked up the hammer afterwards and tried to check them himself. Dr Fulton was looking him over and asked him to sit in his lap, so he did. He also kept dropping his car behind the dr. table and saying, "Uh, Oh!" a usual at dinner time. The Dr. soon figured out this was a game.
Tuesday, July 31, 2012
Tacen's Walking
Tacen began walking when he was 10 months old. He did NOT want to crawl. He had the toddler toddle for quite a while. We kept thinking he'd grow out of it. A few times he even make progress towards running, but then he'd some to regress without any explanation. Then we thought it was related to teething. He seemed to struggle and walk less when he was getting molars and eye teeth. However, he had a really bad period of walking in March of this year and he wasn't teething.
When we were in Utah in June we went to see Cade's cousin Bryan who is a podiatrist. He looked him over and noticed that his hamstrings were tight. He gave Cade some stretches to do and recommended that we see a Pediatric Orthopedic Doctor. Cade started doing the stretches and we saw some improvement. He was close to running yet again, but still isn't quite there.
We had Tacen's 2 year old appointment July 2 and we got a referral from our pediatrician for a Dr. Beaty at Campbell's Clinic. We called and made an appointment. The earliest they had was July 27th at 9am. We took Tacen in. He did really well! He let them take his blood pressure while sitting on my lap, he let the doctor check him out and watch him walk and with my help of holding his toes he let them take a lower body x-ray! Dr. Beaty came back to us to let us know that he checked out fine as far as his bones and alignment are concerned. We are now in the process of meeting up a neurologist. We will see where we go from there. Hopefully we can find some answers.
They gave Tacen a little gown to wear and he pretty much hated it. So we took it off, but I wanted to remember how cute he looked in it!
When we were in Utah in June we went to see Cade's cousin Bryan who is a podiatrist. He looked him over and noticed that his hamstrings were tight. He gave Cade some stretches to do and recommended that we see a Pediatric Orthopedic Doctor. Cade started doing the stretches and we saw some improvement. He was close to running yet again, but still isn't quite there.
We had Tacen's 2 year old appointment July 2 and we got a referral from our pediatrician for a Dr. Beaty at Campbell's Clinic. We called and made an appointment. The earliest they had was July 27th at 9am. We took Tacen in. He did really well! He let them take his blood pressure while sitting on my lap, he let the doctor check him out and watch him walk and with my help of holding his toes he let them take a lower body x-ray! Dr. Beaty came back to us to let us know that he checked out fine as far as his bones and alignment are concerned. We are now in the process of meeting up a neurologist. We will see where we go from there. Hopefully we can find some answers.
They gave Tacen a little gown to wear and he pretty much hated it. So we took it off, but I wanted to remember how cute he looked in it!
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