It has been a few weeks now since we were at TCH for Torah's bi-yearly check-ups with her specialist. We started off Wednesday the 10th with her Brain MRI (it pretty much took up the whole day). From what her doctors can tell, nothing has changed since December 2008 when we had her last one done. I guess this is good news!
Day two was filled with 4 different appointments. We went and saw Dr. E with the Special Care Clinic. She helped us change Torah's Previcid medication to better control Torah's reflux and it has worked until today. She was concerned about Torah's Blood Pressure since it was high so she ordered some blood work to check and see if something was causing it to raise, she also ordered a new genetics microarray test to see if they can find anything new in Torah's DNA that may have caused all of this. Dr. E agreed with Bob and I about maybe bringing Torah down to TCH every 4 months instead of every 6 months since she was having seizures a month before we were scheduled to be there - in other words, Torah was out growing her anti-seizure medication. As of right now, Torah is in the 95th percentile for her height ( 40.5") and weighed in at 36.8 lbs. I did ask Dr. E about getting a sleep study done for Torah to see if she needs to bee on oxygen at night and this was only brought up because when Torah is an inpatient and is hooked up to all the monitors - her O2 levels always drop when she sleeps and the doctors are always asking me if I have her on oxygen at home . . . "No, should I?" is my response. So soon after getting home we did get the study done and are waiting for the results.
Our next appointment was with Orthopedics/Rehab (2 doctors at once is nice). They did a xray of her hips and also of her spine (with and with out her back brace on). Nothing was mentioned about her spine - so, I am guessing that it has not got worse and the brace is doing its job for the most part. The Ortho doctor jumped right in about her hips though. They have been watching them for the past year and were not too worried until now. He wants to do a Varus Derotation Osteotomy (VDRO) procedure on her and we have scheduled it for the end of July. The procedure will consist of them cutting a piece of bone out of each femur so that they can line up the femur (thighbone) and the hip. Below is a picture of a dog after it had the procedure done (it was all I can find):
Dr. C said that she will not need to be in a cast after the surgery since she really does not have any risk of falling (this is a good thing since Torah does not like to be restrained in any way). She will be at TCH for 3-4 days after and it will take about 6 weeks to fully recover. I have talked to Torah's OT and PT and they both agree to up Torah's therapy around that time to help her get stronger. Dr. C also will be doing a Iliopsoas Lengthening (I was told this is pretty much done every time they do a VDRO).
We also saw Dr. P in neurology and she was happy with what the doctors did when Torah was flown down after her status epilepticus (this is what they are calling her seizures)
Our new year with the Waiver starts in June - and I will be looking at getting some new equipment for Torah. Most of which will be in the form of seating and the biggest thing that we need is a wheelchair since she has outgrown her KidKart so fast. With her also starting school - we need to get a chair for her to sit in there as well.
I feel like I am forgetting stuff , but I guess if I remember it later I can always post again. I know I don't get on here much, Tyler seems to keep me busy - and if it is not Ty, then either Torah, Jace or Bob needs me . . . so goes a mom's life!
I am looking forward to some friends that are coming to visit us over the Easter week - I always love having company around. Hopefully the weather stays nice and we can do a lot outside!
I hope everyone has a wonderful and Happy Easter!
Day two was filled with 4 different appointments. We went and saw Dr. E with the Special Care Clinic. She helped us change Torah's Previcid medication to better control Torah's reflux and it has worked until today. She was concerned about Torah's Blood Pressure since it was high so she ordered some blood work to check and see if something was causing it to raise, she also ordered a new genetics microarray test to see if they can find anything new in Torah's DNA that may have caused all of this. Dr. E agreed with Bob and I about maybe bringing Torah down to TCH every 4 months instead of every 6 months since she was having seizures a month before we were scheduled to be there - in other words, Torah was out growing her anti-seizure medication. As of right now, Torah is in the 95th percentile for her height ( 40.5") and weighed in at 36.8 lbs. I did ask Dr. E about getting a sleep study done for Torah to see if she needs to bee on oxygen at night and this was only brought up because when Torah is an inpatient and is hooked up to all the monitors - her O2 levels always drop when she sleeps and the doctors are always asking me if I have her on oxygen at home . . . "No, should I?" is my response. So soon after getting home we did get the study done and are waiting for the results.
Our next appointment was with Orthopedics/Rehab (2 doctors at once is nice). They did a xray of her hips and also of her spine (with and with out her back brace on). Nothing was mentioned about her spine - so, I am guessing that it has not got worse and the brace is doing its job for the most part. The Ortho doctor jumped right in about her hips though. They have been watching them for the past year and were not too worried until now. He wants to do a Varus Derotation Osteotomy (VDRO) procedure on her and we have scheduled it for the end of July. The procedure will consist of them cutting a piece of bone out of each femur so that they can line up the femur (thighbone) and the hip. Below is a picture of a dog after it had the procedure done (it was all I can find):
Dr. C said that she will not need to be in a cast after the surgery since she really does not have any risk of falling (this is a good thing since Torah does not like to be restrained in any way). She will be at TCH for 3-4 days after and it will take about 6 weeks to fully recover. I have talked to Torah's OT and PT and they both agree to up Torah's therapy around that time to help her get stronger. Dr. C also will be doing a Iliopsoas Lengthening (I was told this is pretty much done every time they do a VDRO).
We also saw Dr. P in neurology and she was happy with what the doctors did when Torah was flown down after her status epilepticus (this is what they are calling her seizures)
Our new year with the Waiver starts in June - and I will be looking at getting some new equipment for Torah. Most of which will be in the form of seating and the biggest thing that we need is a wheelchair since she has outgrown her KidKart so fast. With her also starting school - we need to get a chair for her to sit in there as well.
I feel like I am forgetting stuff , but I guess if I remember it later I can always post again. I know I don't get on here much, Tyler seems to keep me busy - and if it is not Ty, then either Torah, Jace or Bob needs me . . . so goes a mom's life!
I am looking forward to some friends that are coming to visit us over the Easter week - I always love having company around. Hopefully the weather stays nice and we can do a lot outside!
I hope everyone has a wonderful and Happy Easter!
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