I'll post all of the Boston pictures soon, but I told David any funny faces he made were going on the blog, so here they are.... a collection of the many faces of David! I sure love that guy!
Sunday, May 18, 2014
Wednesday, May 14, 2014
A Quick Update from Boston
I am typing on my phone, so this will likely be full of errors and brief ;).
Today we went to the spina bifida clinic in Boston. Our primary purpose was to see Dr. Warf, an amazing neurosurgeon they have here, but we also saw the orthopedic surgeon and urologist. They have a multidisciplinary approach where all of the doctors discuss your child's care with each other, in addition to with the parents. This is something I believe is so very important, and sadly lacking in our care in Phoenix.
We really liked Dr. Warf and we are glad we came to see him. We liked the urologist a lot as well, and the orthopedic surgeon was ok. Not as pro-standing as I like, but he did suggest putting Madi in daytime AFOs to keep her legs stretched out and her heel cord loose, so this is something I will further discuss with our new orthopedic surgeon, Dr. Goggins. It's something I have been wondering about, and I am glad to have an opinion about it. The urologist and neurosurgeon feel that Madi's vesicostomy, while it did solve her problems in the short term, was not what she needed. He said she really needed the de-tethering surgery last year, and that likely would have solve her bladder issues. Now that a year has gone by, they aren't sure if the de-tethering surgery will help her bladder at all. That is a big diss appointment, but we will be praying big and that the de-tethering surgery does reverse her bladder issues (her bladder was great for years and then became spastic). The fact that she only has one kidney that works also makes her care a little more complex.
Dr. Warf feels that Madis tethering is very by-the-book and warrants a traditional, not a more intensive , surgery. He said that he has yet to read any research that shows that an intensive surgery leads to a decrease in re-tethering rates or long-term impact on the spine.
So what's the plan? Well, at this point, we are not sure if we want Dr. Moss, our neurosurgeon, to do the surgery, since he wants to go a more aggressive route. We also would prefer not to be in Boston for the surgery, since we would be away from home for about 3 weeks or so, and our secondary insurance won't cover out of state surgery. But, if this is where we need to be, we will absolutely make it work. Before we decide, we are going to Dr. Shaffron, another neurosurgeon we know and trust in Arizona, to get his opinion. We may also have him do the surgery, depending on what he says.
Please continue to pray for us as we are still figuring out Madi's surgery and what that will look like, as well as where it will be. We are very thankful for Dr. Warf's opinion and are so glad we came. Thank you for keeping us in your thoughts and prayers!!
Today we went to the spina bifida clinic in Boston. Our primary purpose was to see Dr. Warf, an amazing neurosurgeon they have here, but we also saw the orthopedic surgeon and urologist. They have a multidisciplinary approach where all of the doctors discuss your child's care with each other, in addition to with the parents. This is something I believe is so very important, and sadly lacking in our care in Phoenix.
We really liked Dr. Warf and we are glad we came to see him. We liked the urologist a lot as well, and the orthopedic surgeon was ok. Not as pro-standing as I like, but he did suggest putting Madi in daytime AFOs to keep her legs stretched out and her heel cord loose, so this is something I will further discuss with our new orthopedic surgeon, Dr. Goggins. It's something I have been wondering about, and I am glad to have an opinion about it. The urologist and neurosurgeon feel that Madi's vesicostomy, while it did solve her problems in the short term, was not what she needed. He said she really needed the de-tethering surgery last year, and that likely would have solve her bladder issues. Now that a year has gone by, they aren't sure if the de-tethering surgery will help her bladder at all. That is a big diss appointment, but we will be praying big and that the de-tethering surgery does reverse her bladder issues (her bladder was great for years and then became spastic). The fact that she only has one kidney that works also makes her care a little more complex.
Dr. Warf feels that Madis tethering is very by-the-book and warrants a traditional, not a more intensive , surgery. He said that he has yet to read any research that shows that an intensive surgery leads to a decrease in re-tethering rates or long-term impact on the spine.
So what's the plan? Well, at this point, we are not sure if we want Dr. Moss, our neurosurgeon, to do the surgery, since he wants to go a more aggressive route. We also would prefer not to be in Boston for the surgery, since we would be away from home for about 3 weeks or so, and our secondary insurance won't cover out of state surgery. But, if this is where we need to be, we will absolutely make it work. Before we decide, we are going to Dr. Shaffron, another neurosurgeon we know and trust in Arizona, to get his opinion. We may also have him do the surgery, depending on what he says.
Please continue to pray for us as we are still figuring out Madi's surgery and what that will look like, as well as where it will be. We are very thankful for Dr. Warf's opinion and are so glad we came. Thank you for keeping us in your thoughts and prayers!!
Sunday, May 11, 2014
Some Hard Test Results
This week was a hard week and I haven't blogged about it yet, so I figured it's about time. I have been getting Madi and Ramya tested through our local school district. It's not so they can attend school, as they will be homeschooling, but so that I can apply for an ESA for them. In Arizona, a child with a disability who is not attending a public school can get extra money to be used towards curriculum, therapies, and also to save for college. You go through testing in the district and whatever extra money the district would get for that child, based on the services they would qualify for, you can get instead. They both need 100 days of public school (we will be doing k-12 online), and then we can apply, now that the testing is done. We plan to use the money towards extra therapies (fun ones, like music therapy), curriculum, and therapeutic riding lessons.
Earlier this week I went in for Ramya's testing results. I was a bit taken back by them and am still trying to process it all and come up with a game plan. Ramya's IQ came back at 58 using the Woodcock-Johnson Test of Cognitive Abilities. That rates her at "very low", and according to them, she is intellectually disabled.
I expected Ramya's test scores to be low. Not only do you have the lack of consistent care, nutrition, and educational activities the first 5 years of her life, but she also has only been home 1 year so she hasn't had time to catch up on language, experiences, and life yet. She's still trying to figure out this thing called family as well. Then you add in her emotional needs, low attention span, and food issues, and things get a little more complicated. But the truth is, I knew something was going on. She really struggles with retaining information, and so many times, I have wondered what I was doing wrong. For example, we work daily on letters. We do one letter a week. We write our letters in sand, in salt, make them with play-dough, form them with handwriting without tears blocks, write them, paint them, make them in shaving cream, make them with wiki sticks, make an alphabet book, look for them in books, read alphabet books, trace them on textured letter puzzles, and the list goes on (and on, and on, and on...). We also review our letters consistently. I think after this year, she possibly remembers about 6-8 of them, with most of those being the letters in her name (but she can now remember most of her name WITHOUT prompting... this is HUGE!). We also work on counting daily with one-to-one correspondence. I thought she had counting to ten, but most days, it's gone again. She is still skipping many numbers. I really did not expect her to test so low, though, and it's taken me back a bit. She scored pretty well in verbal (in the 70's), but auditory and visual processing, memory, and all of the other areas were mostly in the 50's. It's tricky because she is very verbal, so it's easy to assume she understands, but that's not always the case.
The teachers (OT, PT, psychologist, special education teacher, and speech teacher were all there) were very supportive and encouraging. They said that even though IQ doesn't often change much, they think in Ramya's case there is good reason to think once she gets more experiences and gets more time to catch up, we will see her IQ numbers move. I completely agree! I KNOW she is smart, I just have to figure out the best ways to work with her to help her succeed. They also said I am doing all of the right things with her. They said she will just need repetition and that I have to keep doing those things over and over again. I also have an appointment coming up with a developmental pediatrician at the Melmed center and I am looking forward to getting feedback from them in addition. I am also going to use some of the extra money we get for her for tutoring. I want to bring in a tutor that is very knowledgeable in helping kiddos with special needs to work with her and also to help coach me in how to best help her. I am also looking in to auditory and visual processing therapy see if that may help. Right now I am so very thankful to have my background in Education (I have my Master's degree in elementary education, a reading endorsement, and an SEI endorsement). I really believe my background will help with teaching her, and I am so thankful God primed me to be her teacher! We also have a lot of resources available to us, and am I thankful for that as well. I am stumbling through a plan of attack, but it's slowly coming along and I now have more peace about how to proceed.
When looking back at this past year and how far Ramya has come, it's amazing to see the huge strides she has made. When she first came home, she couldn't hold scissors. When she could finally hold them, she didn't have enough strength to close them. Now she can hold a paper in one hand and scissors in the other and cut a basic shape. She used to know how to hold a pencil, but could do nothing more than make very tiny lines on paper. Now she is able to draw some of her shapes, and is even creating drawings on her own. When I sat down with her a few days ago, she drew a picture of herself that actually included eyes, a smile, and a body! She can mostly remember her name and how to write it, and can also spell it out loud most of the time. She knows her basic shapes and colors, and remembers about 6-8 letters. She can recognize a few written numbers as well. Even though learning seems slow at times, she IS learning and is making a lot of improvement. Her English is also coming right along and she speaks in full, clear sentences. Oh, and the singing.... there is lots and lots of singing ;).
Please keep us all in your prayers. Between Ramya's newly diagnosed food allergies and trying to figure all of that out, our upcoming trip to Boston for a second opinion on Madi's upcoming surgery, Madi's upcoming surgery (June 2nd), and the rest of life, of course, there is a lot going on right now. David and I are a good team and the kiddos are rock stars, but there are moments that can still feel stressful none-the-less. The other day I had to make so many phone calls, my phone was dead before lunch. Those are days I just don't love. Please pay for peace that surpasses all understanding, clear direction on how to proceed with Madi's surgery, the right therapists and strategies to help Ramya, and lots of days of fun and laughter sprinkled in between. We are so thankful for our village and all of your prayers!
Earlier this week I went in for Ramya's testing results. I was a bit taken back by them and am still trying to process it all and come up with a game plan. Ramya's IQ came back at 58 using the Woodcock-Johnson Test of Cognitive Abilities. That rates her at "very low", and according to them, she is intellectually disabled.
| IQ Score | WJ III Classification[34] |
|---|---|
| 131 and above | Very superior |
| 121 to 130 | Superior |
| 111 to 120 | High Average |
| 90 to 110 | Average |
| 80 to 89 | Low Average |
| 70 to 79 | Low |
| 69 and below | Very Low |
I expected Ramya's test scores to be low. Not only do you have the lack of consistent care, nutrition, and educational activities the first 5 years of her life, but she also has only been home 1 year so she hasn't had time to catch up on language, experiences, and life yet. She's still trying to figure out this thing called family as well. Then you add in her emotional needs, low attention span, and food issues, and things get a little more complicated. But the truth is, I knew something was going on. She really struggles with retaining information, and so many times, I have wondered what I was doing wrong. For example, we work daily on letters. We do one letter a week. We write our letters in sand, in salt, make them with play-dough, form them with handwriting without tears blocks, write them, paint them, make them in shaving cream, make them with wiki sticks, make an alphabet book, look for them in books, read alphabet books, trace them on textured letter puzzles, and the list goes on (and on, and on, and on...). We also review our letters consistently. I think after this year, she possibly remembers about 6-8 of them, with most of those being the letters in her name (but she can now remember most of her name WITHOUT prompting... this is HUGE!). We also work on counting daily with one-to-one correspondence. I thought she had counting to ten, but most days, it's gone again. She is still skipping many numbers. I really did not expect her to test so low, though, and it's taken me back a bit. She scored pretty well in verbal (in the 70's), but auditory and visual processing, memory, and all of the other areas were mostly in the 50's. It's tricky because she is very verbal, so it's easy to assume she understands, but that's not always the case.
The teachers (OT, PT, psychologist, special education teacher, and speech teacher were all there) were very supportive and encouraging. They said that even though IQ doesn't often change much, they think in Ramya's case there is good reason to think once she gets more experiences and gets more time to catch up, we will see her IQ numbers move. I completely agree! I KNOW she is smart, I just have to figure out the best ways to work with her to help her succeed. They also said I am doing all of the right things with her. They said she will just need repetition and that I have to keep doing those things over and over again. I also have an appointment coming up with a developmental pediatrician at the Melmed center and I am looking forward to getting feedback from them in addition. I am also going to use some of the extra money we get for her for tutoring. I want to bring in a tutor that is very knowledgeable in helping kiddos with special needs to work with her and also to help coach me in how to best help her. I am also looking in to auditory and visual processing therapy see if that may help. Right now I am so very thankful to have my background in Education (I have my Master's degree in elementary education, a reading endorsement, and an SEI endorsement). I really believe my background will help with teaching her, and I am so thankful God primed me to be her teacher! We also have a lot of resources available to us, and am I thankful for that as well. I am stumbling through a plan of attack, but it's slowly coming along and I now have more peace about how to proceed.
When looking back at this past year and how far Ramya has come, it's amazing to see the huge strides she has made. When she first came home, she couldn't hold scissors. When she could finally hold them, she didn't have enough strength to close them. Now she can hold a paper in one hand and scissors in the other and cut a basic shape. She used to know how to hold a pencil, but could do nothing more than make very tiny lines on paper. Now she is able to draw some of her shapes, and is even creating drawings on her own. When I sat down with her a few days ago, she drew a picture of herself that actually included eyes, a smile, and a body! She can mostly remember her name and how to write it, and can also spell it out loud most of the time. She knows her basic shapes and colors, and remembers about 6-8 letters. She can recognize a few written numbers as well. Even though learning seems slow at times, she IS learning and is making a lot of improvement. Her English is also coming right along and she speaks in full, clear sentences. Oh, and the singing.... there is lots and lots of singing ;).
Please keep us all in your prayers. Between Ramya's newly diagnosed food allergies and trying to figure all of that out, our upcoming trip to Boston for a second opinion on Madi's upcoming surgery, Madi's upcoming surgery (June 2nd), and the rest of life, of course, there is a lot going on right now. David and I are a good team and the kiddos are rock stars, but there are moments that can still feel stressful none-the-less. The other day I had to make so many phone calls, my phone was dead before lunch. Those are days I just don't love. Please pay for peace that surpasses all understanding, clear direction on how to proceed with Madi's surgery, the right therapists and strategies to help Ramya, and lots of days of fun and laughter sprinkled in between. We are so thankful for our village and all of your prayers!
But those who trust in the LORD will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint.
- Isaiah 40:31
Friday, May 2, 2014
The Laundry List of Food Allergies for Ramya
I finally have all of the results in from Ramya's allergy testing. Wow, her list is big!! The fact that she doesn't like eating much as it is (Seriously, this girl will pass on cake and ice cream! I tried to buy her a donut one day and she said no! I don't get it!!), combined with these new food restrictions, it's a little rough, but we are working through it. Thankfully I'm creative! I am thankful that she likes a large variety of foods, she just doesn't love eating so much.
For testing we went ahead and did a blood test. I've heard that they aren't always the most accurate, but in our experience, it's actually been pretty accurate. It's nice that it's just one blood draw and then it's done. We did IgE, which is what you would consider "true" allergies, as well as IgG, which is more sensitivities. Conner, Madi, David, and I all have some sensitivities. We have to pay close attention to them because there are lots of issues that come up if they eat much that they are sensitive too. There are behavior changes, skin rashes, sleep issues, constipation and/or diarrhea, other gastro issues, tummy aches, and a whole lot more! Anyhow, Ramya actually has both true allergies AND sensitivities. Wooo hoooo (yes, yes, I am being slightly sarcastic). Here's Ramya's list...
** Indicates a very high allergy or sensitivity
IgE- "True" food allergies:
We are working on foods we can eat. Lunches and Dinners are not too bad, but breakfast is a challenge without oats and eggs. She is really bummed about the eggs too. So far I've found vanilla shakes I can make for her, pancakes from scratch avoiding allergens, and a rice/quinoa breakfast blend. The yeast is hard since it's in pizza crusts, breads, etc.... I plan to get her some flat Indian breads that are gluten free that I can use for crusts and sandwiches, or even maybe tortillas that are gluten-free. If anyone else has other ideas, please comment and let me know! Thanks!
For testing we went ahead and did a blood test. I've heard that they aren't always the most accurate, but in our experience, it's actually been pretty accurate. It's nice that it's just one blood draw and then it's done. We did IgE, which is what you would consider "true" allergies, as well as IgG, which is more sensitivities. Conner, Madi, David, and I all have some sensitivities. We have to pay close attention to them because there are lots of issues that come up if they eat much that they are sensitive too. There are behavior changes, skin rashes, sleep issues, constipation and/or diarrhea, other gastro issues, tummy aches, and a whole lot more! Anyhow, Ramya actually has both true allergies AND sensitivities. Wooo hoooo (yes, yes, I am being slightly sarcastic). Here's Ramya's list...
** Indicates a very high allergy or sensitivity
IgE- "True" food allergies:
- Egg
- Crab**
- Beef
- Tuna
- Banana
- Wheat**
- Corn**
- Banana (came up under both! Something major we have to watch!)**
- Egg (again, came up on both)
- Oats**
- Yeast Bakers/Brewers
- Codfish
- Crab (came up under both)
- Pork **
- Beef (came up under both)**
- Peanuts
- Carrots
- Oranges
- Potato
- Strawberry
- Apple
- Cacao (chocolate)
We are working on foods we can eat. Lunches and Dinners are not too bad, but breakfast is a challenge without oats and eggs. She is really bummed about the eggs too. So far I've found vanilla shakes I can make for her, pancakes from scratch avoiding allergens, and a rice/quinoa breakfast blend. The yeast is hard since it's in pizza crusts, breads, etc.... I plan to get her some flat Indian breads that are gluten free that I can use for crusts and sandwiches, or even maybe tortillas that are gluten-free. If anyone else has other ideas, please comment and let me know! Thanks!
Thursday, May 1, 2014
Our Neurosurgeon Report from Today
Today we had a neurosurgeon appointment down at Cardon Children's Hospital with Dr. Moss. We reviewed Ramya's MRI scan from 6 months ago (endocrinology wanted a sedated MRI due to her early puberty, so we had Dr. Moss send in orders for a full spina MRI so that we could coordinate, even though we didn't need the MRI quite yet. It's always nice to have one instead of two!!). Ramya's spine is tethered, as we would expect since she has had spinal surgery, but because she is not symptomatic we are not looking at doing surgery to release it. She has a Chiari II malformation as well, as we expected, but fluid is able to flow around it (her brain stem ;)), and she doesn't have any chiari symptoms, so we are not going to do anything in that area either. Her pituitary gland looks like something is putting pressure on it, but she does not have any cysts and the fluid levels in her ventricles look good, so he's not quite sure why. It may be the reason she started going in to early puberty, but there is really no way to know. So basically, lots of things we expected and nothing that we didn't, no need for surgery, and we don't need another appointment for a year, so I count that as a win! Yeah!
After the neurosurgeon we grabbed a quick lunch at Chipotle and headed over to our naturopathic doctor, Dr. Vitaro, to discuss the results of some blood tests I had done. I have a family history of thyroid problems and we felt it was a good idea just to keep an eye on my thyroid. My overall thyroid level looks good, but when you break it down, I do have an area that is below the "normal" range. I'm going to start taking a natural thyroid supplement to try and keep my thyroid healthy, as well as hopefully boost up my numbers. He also tested me for any possible underlying autoimmune disorders, since that can effect the thyroid. Everything came back negative, so I have nothing underlying going on, which is great! My only real thyroid symptom is that losing weight takes a lot (I mean lot!) of work for me. Part of that is the fact that I've had kids, part of that is the fact that I was addicted to graham crackers and milk when I was pregnant with Madi, part of it is the fact that I like food, then of course there's the fact that I'm 32 and my metabolism is slowing down. Oh, then there is that whole working out thing, and the fact that I haven't consistently worked out in a long time. All of those combined makes it tough! I've been eating really, really well the past few months (very little fruit (I actually had none the first month, but now have a piece a day), only quinoa and millet for occasional grains, lean organic meats, and lots and lots of veggies and some nuts... I've basically been following the candida diet), and have lost a little weight, but am having a hard time getting below my current weight. I've been hovering around this number for quite a while. I just started yoga and I am hoping that will help. I'm starting to feel healthier, which is my goal, and for that, I am thankful!
On a totally unrelated topic, next week is Madi's last week of preschool. The following week is actually the last week, but we will be in Boston getting a second opinion on surgery, so next week is her last week. The teacher is letting me come in next Friday to do a few fun things with the kids to celebrate. I can't believe the school year is almost over for her. Next year she will officially be a homeschooling kindergartener! I can't wait!!
Please be praying for our upcoming trip to Boston. We are praying that we get answers on HOW to proceed with Madi's detethering surgery. Thank you for your love and prayers!
After the neurosurgeon we grabbed a quick lunch at Chipotle and headed over to our naturopathic doctor, Dr. Vitaro, to discuss the results of some blood tests I had done. I have a family history of thyroid problems and we felt it was a good idea just to keep an eye on my thyroid. My overall thyroid level looks good, but when you break it down, I do have an area that is below the "normal" range. I'm going to start taking a natural thyroid supplement to try and keep my thyroid healthy, as well as hopefully boost up my numbers. He also tested me for any possible underlying autoimmune disorders, since that can effect the thyroid. Everything came back negative, so I have nothing underlying going on, which is great! My only real thyroid symptom is that losing weight takes a lot (I mean lot!) of work for me. Part of that is the fact that I've had kids, part of that is the fact that I was addicted to graham crackers and milk when I was pregnant with Madi, part of it is the fact that I like food, then of course there's the fact that I'm 32 and my metabolism is slowing down. Oh, then there is that whole working out thing, and the fact that I haven't consistently worked out in a long time. All of those combined makes it tough! I've been eating really, really well the past few months (very little fruit (I actually had none the first month, but now have a piece a day), only quinoa and millet for occasional grains, lean organic meats, and lots and lots of veggies and some nuts... I've basically been following the candida diet), and have lost a little weight, but am having a hard time getting below my current weight. I've been hovering around this number for quite a while. I just started yoga and I am hoping that will help. I'm starting to feel healthier, which is my goal, and for that, I am thankful!
On a totally unrelated topic, next week is Madi's last week of preschool. The following week is actually the last week, but we will be in Boston getting a second opinion on surgery, so next week is her last week. The teacher is letting me come in next Friday to do a few fun things with the kids to celebrate. I can't believe the school year is almost over for her. Next year she will officially be a homeschooling kindergartener! I can't wait!!
Please be praying for our upcoming trip to Boston. We are praying that we get answers on HOW to proceed with Madi's detethering surgery. Thank you for your love and prayers!
Wednesday, April 30, 2014
An HKFO Kinda Day
Yesterday was an HKFO kind of day. We had an appointment at noon with Ron Whiteside, who makes the girls leg braces for them. We had to leave 30 minutes early to get there in time, so I packed a lunch to go and we headed out.
First Ron casted Ramya. She currently has KAFOs (leg braces to the upper thigh), but they just aren't working well for her. She walked in the orphanage, but was not taught how to walk correctly with the correct posture, muscles, etc..., spent a lot of time hanging on her crib, and also dislikes putting weight in her legs and using them, so they just aren't working well. She also tries to do everything with her arms. We (me and Tami, her physical therapist) decided that HKFOs (leg braces that go up above her hips) might just be better for her for now. Eventually she can go back down to KAFOs, and the ultimate goal is AFOs for her, but we think we need to go up, let her muscles strengthen, get her posture correct, and all of that good stuff first. Hopefully it helps her! She does well when I am physically holding her body in the correct posture, but sometimes I actually have to use my arms for other things ;).
First Ron casted Ramya. She currently has KAFOs (leg braces to the upper thigh), but they just aren't working well for her. She walked in the orphanage, but was not taught how to walk correctly with the correct posture, muscles, etc..., spent a lot of time hanging on her crib, and also dislikes putting weight in her legs and using them, so they just aren't working well. She also tries to do everything with her arms. We (me and Tami, her physical therapist) decided that HKFOs (leg braces that go up above her hips) might just be better for her for now. Eventually she can go back down to KAFOs, and the ultimate goal is AFOs for her, but we think we need to go up, let her muscles strengthen, get her posture correct, and all of that good stuff first. Hopefully it helps her! She does well when I am physically holding her body in the correct posture, but sometimes I actually have to use my arms for other things ;).
Next up was Madi. Her HKFOs have been hurting her, so she has not been wanting to be up and standing. She gets tight really fast, so being up is really important. Not to mention it helps her bowels, bladder, bone density, circulation, hips, and so much more!! Ron fixed those for Madi, so now she's a happy girl!!
That's all for now! Tomorrow is Ramya's neurosurgeon appointment, so I'll be back with more updates soon :). I pray you all have a blessed and wonderful day!
Sunday, April 27, 2014
A Little Urology Update
Last week both girls had renal ultrasounds and appointments with our urologist, Dr. Zuniga. I am happy to report that everything looks good for both girls! Additionally, Madi's urine culture from our hospital stay never grew anything, which means that her vesicostomy is working and that the renal reflux is not causing any infections. Yeah! We (as in Dr. Zuniga and I) took her off of her prophylactic antibiotic as a trial run towards the end of last year, and I just give her a few natural things (which I will post about separately one day) daily. It seems to be working great in conjunction with the vesicostomy, because she's had no infections since then. We have also been working very hard on re-building her gut flora, and now her bowels are working SO much better! I know, I know, TMI, but that's just life for us. We go back in 6 months for another visit, but won't need more testing for a year. I'm excited!
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