This past Monday we headed down to UAB for K's post op MRI, that we had to reschedule from earlier since she was sick. All in all everything went great, she did fine during the MRI and woke up a little easier this time from the sedation and we got the all clear sign from her doctor. So thankful for good results! The worst part of the entire process was her not being able to eat that morning or have anything to drink after 8, she was not happy about that.
We're still working with physical therapy from UCP/EI and it's going well. K can walk across the room without her walker. Of course she is still a little unsteady, but she went from about 3 steps to 15ish on average. She is so happy when she does it, we cheer her on :) We started speech this past month as well, she's so shy around new people so it's taking some time to warm up. This time was better than last so I am hopeful the next one will go well. When she was evaluated by the ST, she said she was at about 14 months in her verbal skills :( but I feel like she's doing much better and more than they think, because she is so shy. I do think she is behind, I just don't think that much.
We go back to UAB on April 11 for her Spina Bifida Clinic, we get to see everyone (neurology, urology, etc) and it's an all day thing. Dread that part, but now we know, so hopefully we will be more prepared. Other than that not a whole lot going on, we need to get her new braces soon, custom ones, which will be pricey. :/ but she needs them so we'll have to figure out how to pay.
Today also marks K turning 22 months! I have 2 months to plan a 2nd birthday party for her. We didn't do a big thing for 1st because of all that was going on with my mom, so I hope this one will be better :)
Showing posts with label mri. Show all posts
Showing posts with label mri. Show all posts
Thursday, March 8, 2012
Sunday, February 5, 2012
The Unknown
Tomorrow is another day of the unknown. K has her post op MRI at 9 at UAB. I am stressed, nervous, anxious and holding my breath until we get the results. In October when we were awaiting her clinic visit, I was worried something was wrong, and just felt like it was. I was right, she had a MRI to confirm the doctors suspicion, retethering of the spinal cord. That resulted in her second detethering surgery on Dec 6, 2011.
So now we face the unknown again, another MRI, another wait and see moment. I can only pray that tomorrows results are good and that everything looks right, healing right and does not require further surgery. Words that are synonymous with Spina Bifida, wait and see. So much of our life, Kaitlyn's life is wait and see. Every child, every case of SB is different and the doctors can't predict what the future will hold, only give you an idea of what "might" happen, but there is no guarantee.
So tomorrow, we head out early to Children's South and then over to see our Neurosurgeon for the results. I am asking all our family, friends and SB families to please pray and send good thoughts for Kaitlyn tomorrow.
Update: Well we had to cancel the MRI, K woke up with a 101 temp at about midnight last night, so we're rescheduled for early March. :(
So now we face the unknown again, another MRI, another wait and see moment. I can only pray that tomorrows results are good and that everything looks right, healing right and does not require further surgery. Words that are synonymous with Spina Bifida, wait and see. So much of our life, Kaitlyn's life is wait and see. Every child, every case of SB is different and the doctors can't predict what the future will hold, only give you an idea of what "might" happen, but there is no guarantee.
So tomorrow, we head out early to Children's South and then over to see our Neurosurgeon for the results. I am asking all our family, friends and SB families to please pray and send good thoughts for Kaitlyn tomorrow.
Update: Well we had to cancel the MRI, K woke up with a 101 temp at about midnight last night, so we're rescheduled for early March. :(
Thursday, November 3, 2011
MRI Update
I am so sad, we found out on Monday that Kaitlyn has to have another surgery in December.
About 2 weeks ago, we took Kaitlyn for her 1st Spina Bifida Clinic. We were set to see her Neurosurgeon, Urologist, Ortho & Rehab Med Drs plus have x-ray's, renal ultrasound and urodynamics testing done. We did our testing in the morning and saw the drs after lunch. Anyway, we saw the uro first because he did the urodynamics test, which basically was our 1st step going downhill. This test should have been very uncomfortable for her, but she really just laid there and played with the nurse the whole time and laughed. The first time she had it done at about 6 weeks or so she screamed and screamed. So turns out, he believes she is losing sensitivity and that her bladder is not emptying completely. So he put her on Ditropan to help the bladder some and told us to start cathing her again. So we are doing that about every 4 hours and she definitely needed it, because she will have a pretty wet diaper, and still we get urine after, even if shes not drinking a lot.
We did not get to see our neuro because he had emergency surgery but he popped in and said that he wanted to order a MRI because it could be possible she is retethering. OY, not really what I wanted to hear. We went ahead and saw the ortho and rehab med drs, which that part I thought went well. We got hooked up with a service here in AL, that helps pay for equipment (braces, wheel chairs) etc, and mostly it'll be no out of pocket costs for us, which is awesome. The ortho/rehab drs both suggested she get more PT and some OT because they think it would help her in walking, as she isn't fully walking yet. She can cruise furniture, push toys across room, but not much else. It was sounding so good that she would probably be walking by the time she's 2. That was like music to my ears.
Fast forward to her MRI this past Monday. We got in to the see the NS and he was like come back here with me, that was the 1st sign I knew something was wrong because he normally talks to us in the pt rooms, and the nurse took K for a bit. So he pulls up her MRI results and is showing us the various things that had changed since her last MRI (about a yr ago) and several things were different. First her cerebellum was being pulled down, which means her spinal cord has retethered. She also has some spinal fluid pooling at the bottom of her spine, near her lipoma (Cyst) area and on top of all that, she has a vertebrae that is growing in almost a J shape... :/ her spine is straight, then it has a curve, down towards the bottom and then straight again.... :/ They didn't notice this prior because she was so small and because it hadn't fully formed, is what he said.
So she needs surgery to detether her cord again, he's also going to remove more of the fatty tissue from the lipoma this time, she'll still have some but it'll not be as large. The incision is probably going to be longer and the surgery sounds more complicated this time around. He can't give exact things he'll have to do until he gets in and sees the spinal cord and how bad the nerves are around it and if they grew in etc. If so, there is a chance she will lose more function in her legs/bladder depending on the nerve damage and/or if he has to cut any. He of course is going to try to avoid that at all cost.
He also ordered 2 CT scans on the Monday of her Pre-Op visit, one on her head and one of the spine. The head one is to double check the spinal fluid/cerebellum and make sure there isn't any spinal fluid building there, because if could be Chiari Malformation, which could require a shunt to drain the fluid, which is another surgery. Praying it's not, he doesn't think it is off hand, since her head size hasn't changed more than normal growth.
Surgery is slated for Dec 6, she'll have to be in the hospital for at least 5 days on her stomach to heal and make sure there are no problems etc. Please just pray for us and/or send lots of positive thoughts our way. I just don't know what to do, I thought she was doing so well, trying to walk more etc, but now I feel like it's all come to a stop. If there is nerve damage and he has to cut any nerves, she may never walk. I know there could be worse things, but I was so hopeful after our visit with the ortho dr 2 weeks ago, now I just don't know.
* sorry if this is repeat for some of you reading, but I am trying to keep track of everything in 1 spot for future information.
About 2 weeks ago, we took Kaitlyn for her 1st Spina Bifida Clinic. We were set to see her Neurosurgeon, Urologist, Ortho & Rehab Med Drs plus have x-ray's, renal ultrasound and urodynamics testing done. We did our testing in the morning and saw the drs after lunch. Anyway, we saw the uro first because he did the urodynamics test, which basically was our 1st step going downhill. This test should have been very uncomfortable for her, but she really just laid there and played with the nurse the whole time and laughed. The first time she had it done at about 6 weeks or so she screamed and screamed. So turns out, he believes she is losing sensitivity and that her bladder is not emptying completely. So he put her on Ditropan to help the bladder some and told us to start cathing her again. So we are doing that about every 4 hours and she definitely needed it, because she will have a pretty wet diaper, and still we get urine after, even if shes not drinking a lot.
We did not get to see our neuro because he had emergency surgery but he popped in and said that he wanted to order a MRI because it could be possible she is retethering. OY, not really what I wanted to hear. We went ahead and saw the ortho and rehab med drs, which that part I thought went well. We got hooked up with a service here in AL, that helps pay for equipment (braces, wheel chairs) etc, and mostly it'll be no out of pocket costs for us, which is awesome. The ortho/rehab drs both suggested she get more PT and some OT because they think it would help her in walking, as she isn't fully walking yet. She can cruise furniture, push toys across room, but not much else. It was sounding so good that she would probably be walking by the time she's 2. That was like music to my ears.
Fast forward to her MRI this past Monday. We got in to the see the NS and he was like come back here with me, that was the 1st sign I knew something was wrong because he normally talks to us in the pt rooms, and the nurse took K for a bit. So he pulls up her MRI results and is showing us the various things that had changed since her last MRI (about a yr ago) and several things were different. First her cerebellum was being pulled down, which means her spinal cord has retethered. She also has some spinal fluid pooling at the bottom of her spine, near her lipoma (Cyst) area and on top of all that, she has a vertebrae that is growing in almost a J shape... :/ her spine is straight, then it has a curve, down towards the bottom and then straight again.... :/ They didn't notice this prior because she was so small and because it hadn't fully formed, is what he said.
So she needs surgery to detether her cord again, he's also going to remove more of the fatty tissue from the lipoma this time, she'll still have some but it'll not be as large. The incision is probably going to be longer and the surgery sounds more complicated this time around. He can't give exact things he'll have to do until he gets in and sees the spinal cord and how bad the nerves are around it and if they grew in etc. If so, there is a chance she will lose more function in her legs/bladder depending on the nerve damage and/or if he has to cut any. He of course is going to try to avoid that at all cost.
He also ordered 2 CT scans on the Monday of her Pre-Op visit, one on her head and one of the spine. The head one is to double check the spinal fluid/cerebellum and make sure there isn't any spinal fluid building there, because if could be Chiari Malformation, which could require a shunt to drain the fluid, which is another surgery. Praying it's not, he doesn't think it is off hand, since her head size hasn't changed more than normal growth.
Surgery is slated for Dec 6, she'll have to be in the hospital for at least 5 days on her stomach to heal and make sure there are no problems etc. Please just pray for us and/or send lots of positive thoughts our way. I just don't know what to do, I thought she was doing so well, trying to walk more etc, but now I feel like it's all come to a stop. If there is nerve damage and he has to cut any nerves, she may never walk. I know there could be worse things, but I was so hopeful after our visit with the ortho dr 2 weeks ago, now I just don't know.
* sorry if this is repeat for some of you reading, but I am trying to keep track of everything in 1 spot for future information.
Monday, October 10, 2011
Where to Start?
I don't even know where to really start this blog post, I am really behind as you can see, since I never even posted a birthday entry. :/ I feel like a terrible mother, but know that I shouldn't let blog postings make me feel that way. I am going to do my best to catch up on here in the next couple weeks, so you most likely will see updates from May until recent. I know other SB mama's understand, sometimes life just gets in the way.
For the sake of time today, I'll just post what is going on right now. K has her 1st Spina Bifida Clinic on Wed, Oct 12. Yes I know for most that seems strange, since a lot of you have been doing Clinic days since your little one was born. It's new to us, I still feel like we're having to get through this by ourselves, with out much help or guidance. So come Wed, we get to have all kinds of fun tests, renal ultrasounds, urodynamics, and x-rays done, we're skipping the MRI this time (not our choice). We are seeing our normal Urologist & Neurologist, but also seeing Orthopedics & Rehab Medicine. Not sure what the last one is for.... any insights?
We're still working on strengthening her ankles, she's much more steady now with the braces. She cruises furniture, can push toys along and walk holding on to our hands, but not steps or standing by herself. We're still doing PT twice a month, we have an appt today in fact. PT mentioned bringing a walker, but not sure if she remembered or not. We'll see.
K is now 17 months old, I just can't believe she's almost one and half! My little baby isn't so little anymore, she's gaining weight and getting taller and cute as a button. She's saying and/or trying to say more words, and signs all done, more and eat very well and uses them often. She loves her sisters and loves they play with her and definitely misses them while they are at school.
Last week we checked out a new playground here called "Everybody Can Play", it's awesome and K will love it even more when she's a little bigger. It is wheel chair accessible, has astroturf in the jungle gym area, great swings, shades and hopefully next summer a cool new splash pad! She had fun playing and we can't wait to go back. :)
I'll be back later this week with updates on our clinic day.
Oh I totally forgot! Last month I met 3 moms with SB kiddos! Two of them have kids just a few months older than K, so it was really awesome to talk with them and see their kids, and they are ADORABLE! I'm trying to start our own little local support group, so hopefully I'll meet more soon!
For the sake of time today, I'll just post what is going on right now. K has her 1st Spina Bifida Clinic on Wed, Oct 12. Yes I know for most that seems strange, since a lot of you have been doing Clinic days since your little one was born. It's new to us, I still feel like we're having to get through this by ourselves, with out much help or guidance. So come Wed, we get to have all kinds of fun tests, renal ultrasounds, urodynamics, and x-rays done, we're skipping the MRI this time (not our choice). We are seeing our normal Urologist & Neurologist, but also seeing Orthopedics & Rehab Medicine. Not sure what the last one is for.... any insights?
We're still working on strengthening her ankles, she's much more steady now with the braces. She cruises furniture, can push toys along and walk holding on to our hands, but not steps or standing by herself. We're still doing PT twice a month, we have an appt today in fact. PT mentioned bringing a walker, but not sure if she remembered or not. We'll see.
K is now 17 months old, I just can't believe she's almost one and half! My little baby isn't so little anymore, she's gaining weight and getting taller and cute as a button. She's saying and/or trying to say more words, and signs all done, more and eat very well and uses them often. She loves her sisters and loves they play with her and definitely misses them while they are at school.
Last week we checked out a new playground here called "Everybody Can Play", it's awesome and K will love it even more when she's a little bigger. It is wheel chair accessible, has astroturf in the jungle gym area, great swings, shades and hopefully next summer a cool new splash pad! She had fun playing and we can't wait to go back. :)
I'll be back later this week with updates on our clinic day.
Oh I totally forgot! Last month I met 3 moms with SB kiddos! Two of them have kids just a few months older than K, so it was really awesome to talk with them and see their kids, and they are ADORABLE! I'm trying to start our own little local support group, so hopefully I'll meet more soon!
Tuesday, October 19, 2010
MRI and Ultrasound Update
Yesterday we had to go UAB for Kaitlyn's MRI and Renal Ultrasound, of course we had to be there bright and early, 7:45 am, which meant getting up before the sun! Not so much fun I tell ya. Not only that but we had to wake her up before 2 for a final feeding, then between 2 and 6 she could have clear liquids, so we again woke her at 5 for some juice. Poor kid, she would have actually slept through the night had we not HAD to wake her. Oh well.
Once we arrived, we went for check in and then for the MRI but they had the ultrasound tech ready, so we did that first. She did so awesome, just laid there and let her do her job :) I thought for sure by 8 she would be screaming her head off for food. Nope! So after the ultrasound was done we headed for the MRI, took awhile to get ready but the worst part was K getting the IV. That was the only time she cried. We were done with that within an hour or so, then it was back to the clinic to wait for the doctor consultation and test results.
Our neurosurgeon came in and asked how things were going etc and told us that everything looked fine on the MRI, this was just a baseline for future reference since her surgery. The only thing that could be "somewhat" troubling is that children that have tethered cords have a 5-10% chance of re-tethering and because of her lipoma, her chances are in the higher range. There isn't really anything we can do to prevent it, so we'll just keep an eye out in case things start to happen that weren't before. If it does happen and it's not caught, it could cause nerve damage. However we're not thinking about it right now. I know there are still a lot of possibilities that could happen, but I can't dwell on it.
Next came our urologist, pretty much same deal. The renal ultrasound went fine, he wasn't to concerned over anything and again we're just keeping an eye on things if something changes. He too agrees we do not need to come back for 6 months unless something comes up. So as of right now we are set to return on April 18, 2011!
I was glad to get good reports yesterday as I had not been sleeping well the last couple nights. Everything is back to "normal" today and look forward to some doctor free months ahead!
Once we arrived, we went for check in and then for the MRI but they had the ultrasound tech ready, so we did that first. She did so awesome, just laid there and let her do her job :) I thought for sure by 8 she would be screaming her head off for food. Nope! So after the ultrasound was done we headed for the MRI, took awhile to get ready but the worst part was K getting the IV. That was the only time she cried. We were done with that within an hour or so, then it was back to the clinic to wait for the doctor consultation and test results.
Our neurosurgeon came in and asked how things were going etc and told us that everything looked fine on the MRI, this was just a baseline for future reference since her surgery. The only thing that could be "somewhat" troubling is that children that have tethered cords have a 5-10% chance of re-tethering and because of her lipoma, her chances are in the higher range. There isn't really anything we can do to prevent it, so we'll just keep an eye out in case things start to happen that weren't before. If it does happen and it's not caught, it could cause nerve damage. However we're not thinking about it right now. I know there are still a lot of possibilities that could happen, but I can't dwell on it.
Next came our urologist, pretty much same deal. The renal ultrasound went fine, he wasn't to concerned over anything and again we're just keeping an eye on things if something changes. He too agrees we do not need to come back for 6 months unless something comes up. So as of right now we are set to return on April 18, 2011!
I was glad to get good reports yesterday as I had not been sleeping well the last couple nights. Everything is back to "normal" today and look forward to some doctor free months ahead!
Tuesday, August 10, 2010
Healing
Copied from other blog
July 12, 2010
Miss K is doing great, her incision is healing properly and she got her stitches out today. I was worried how she would react, would it hurt her etc, she just kinda of laid there like it was no big deal. :) We return to UAB in 3 months for a MRI so they have a baseline of what her spine is like since the surgery. We were hoping for a 6 month break but I would rather them be thorough and know exactly what is going on with her.
Thanks for the thoughts and prayers!
July 12, 2010
Healing
Thanks for the thoughts and prayers!
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