Wednesday, March 23, 2011
March 23rd- The Waiting Game!
Well, unfortunately Lexi's MRI appointment has been rescheduled until April 26th! The MRI dept didn't realize Lexi needed a brain, heart AND spine MRI and did not schedule enough time (they'll need 5-6 hours instead of 3). We were very frustrated when they called because of all the preparations we have to make to get her to Cleveland (hotel, babysitters for twins, day off work for family going with me....) But, what do we do- ask for a discount? Yeah right! The GOOD news, however, is that I did not schedule any appointments in Cleveland until after the MRI- so it looks like we get a month-long break from Cleveland Clinic appointments! Hooray for a blessing in disguise! We probably won't update again until right after Easter!
Sunday, March 6, 2011
March 6- a very full day!
I'm a little behind in updating everyone on our most recent trip to Cleveland Clinic! Sorry!
We went to Cleveland Clinic on Friday, Feb 25th (actually decided to leave the night before to beat the major snow storm- SO glad we did!)
Lexi had 3 very lengthy appointments and here's the updates:
Nuerology- Unfortunately, this appointment with Lexi's neuro doctor did not go as well as we hoped. While Lexi IS making progress, the Dr. is concerned with how long her progress is taking. For instance, most toddlers will start taking a few steps and within a month or so, progress to full walking. Lexi has been taking a few steps for several months and isn't making as quick of progress as the doctor would like. He is concerned about her poor balance. This is one major symptom of a chiari (brain stem herniation). So, he has scheduled a brain MRI for March 22nd. Depending on the results of the MRI, he may also schedule a full-body nerve scan in April.
Cardiology- Lexi's cardiologist was pleased with the results from her EKG but, since the nuerologist is doing an MRI in a few weeks, the cardiologist decided instead of doing an echocardiogram, she will "tag on" a heart MRI after the brain MRI on the 22nd. This will give the cardiologist a very clear picture as to what is happening with Lexi's 2 heart defects.
ENT- This appointment took MUCH longer than expected. The ENT wanted to remove a significant amount of earwax from Lexi's ear. After almost an hour, it appears as though the Dr didn't realize exactly how much ear wax Lexi really had! But, the good news is that the ENT thinks the earwax may have been affecting Lexi's hearing. So, after finally getting out all the wax, they sent us directly to see an audiologist for a thorough hearing test. Unfortunately, they were unable to get a full test done (she shut down after about 30 minutes- it had been a LONG day!). They were able to conclude, however, that her ear drum IS working fine! They will repeat the test (AGAIN) in 2 months and are also planning another swallow study as Lexi still aspirates on thin liquids.
So, March 22nd, we go for a REALLY important MRI of Lexi's heart and brain. This entire process will take 4-5 hours and they will have to sedate her and put her on a ventilator while she is under. This, however, will give us very clear input as to whether or not she'll need brain surgery in the next few months (so, yes, we are VERY nervous about the test!)
Please pray that the results of the heart and brain MRI have a positive outcome! Pray for our family and little Lexi while she once again is put under and on a ventilator. It's always hard to see your little one go through so much!
I will update again after we get the results back from her MRI, which will be the week of March 28th!
As always, thank you for your continued prayers for Lexi Mae! She is making so much progress but still has a long road ahead of her!
We went to Cleveland Clinic on Friday, Feb 25th (actually decided to leave the night before to beat the major snow storm- SO glad we did!)
Lexi had 3 very lengthy appointments and here's the updates:
Nuerology- Unfortunately, this appointment with Lexi's neuro doctor did not go as well as we hoped. While Lexi IS making progress, the Dr. is concerned with how long her progress is taking. For instance, most toddlers will start taking a few steps and within a month or so, progress to full walking. Lexi has been taking a few steps for several months and isn't making as quick of progress as the doctor would like. He is concerned about her poor balance. This is one major symptom of a chiari (brain stem herniation). So, he has scheduled a brain MRI for March 22nd. Depending on the results of the MRI, he may also schedule a full-body nerve scan in April.
Cardiology- Lexi's cardiologist was pleased with the results from her EKG but, since the nuerologist is doing an MRI in a few weeks, the cardiologist decided instead of doing an echocardiogram, she will "tag on" a heart MRI after the brain MRI on the 22nd. This will give the cardiologist a very clear picture as to what is happening with Lexi's 2 heart defects.
ENT- This appointment took MUCH longer than expected. The ENT wanted to remove a significant amount of earwax from Lexi's ear. After almost an hour, it appears as though the Dr didn't realize exactly how much ear wax Lexi really had! But, the good news is that the ENT thinks the earwax may have been affecting Lexi's hearing. So, after finally getting out all the wax, they sent us directly to see an audiologist for a thorough hearing test. Unfortunately, they were unable to get a full test done (she shut down after about 30 minutes- it had been a LONG day!). They were able to conclude, however, that her ear drum IS working fine! They will repeat the test (AGAIN) in 2 months and are also planning another swallow study as Lexi still aspirates on thin liquids.
So, March 22nd, we go for a REALLY important MRI of Lexi's heart and brain. This entire process will take 4-5 hours and they will have to sedate her and put her on a ventilator while she is under. This, however, will give us very clear input as to whether or not she'll need brain surgery in the next few months (so, yes, we are VERY nervous about the test!)
Please pray that the results of the heart and brain MRI have a positive outcome! Pray for our family and little Lexi while she once again is put under and on a ventilator. It's always hard to see your little one go through so much!
I will update again after we get the results back from her MRI, which will be the week of March 28th!
As always, thank you for your continued prayers for Lexi Mae! She is making so much progress but still has a long road ahead of her!
Subscribe to:
Posts (Atom)
