Tuesday, December 29, 2009
Annie's Echocardiogram
After meeting with Annie's pulmonologist, it was decided that she should have an echocardiogram to determine how much damage, if any, has been done to her heart as a result of 5 years of sleep apnea. Fortunately, the cardiologist said her heart looks perfectly normal! The only thing he did not comment on, however, was her high heart rate. Annie was asleep during the test, but I noticed the monitor showed her heart rate around 120! The nurse practitioner agreed that's not normal, but said the cardiologist didn't make any note of her heart rate. So we'll definitely have that monitored again at her next sleep study.
Friday, December 25, 2009
Christmas 2009
We had our first white Christmas in 8 years! A storm hit on Christmas Eve bringing sub-zero temperatures with snow and high winds. It was a good thing we didn't need to go anywhere, so we had a relaxing Christmas day.
So excited that Santa came!
Santa brought Justin a toy too! (Still waiting for the entertainment unit to be delivered--I guess the elves couldn't fit it on the sleigh.)
Molly loves her new ballerina outfit.
Lexie loves her new toys.
Justin made these two chairs for Molly and Lexie.
I guess this is how the roads get plowed when you live in Nebraska farming country!
The wind created huge drifts of snow. This is our driveway, and you can't even tell where the street is!
Justin installed a new TV antenna in our attic as his Christmas project.
So excited that Santa came!
Santa brought Justin a toy too! (Still waiting for the entertainment unit to be delivered--I guess the elves couldn't fit it on the sleigh.)
Molly loves her new ballerina outfit.
Lexie loves her new toys.
Justin made these two chairs for Molly and Lexie.
I guess this is how the roads get plowed when you live in Nebraska farming country!
The wind created huge drifts of snow. This is our driveway, and you can't even tell where the street is!
Justin installed a new TV antenna in our attic as his Christmas project.Monday, December 21, 2009
Merry Christmas From the Tolmans!
Merry, merry Christmas! We find ourselves in another Christmas season surrounded by so many blessings! We are so grateful for our family and friends who have served us so generously this year. It’s been quite a busy year! 2009 started out with Justin finally finishing and defending his dissertation at the end of January. He then moved to
Jodi and the girls moved up to
In May we all took a trip back to
Justin currently serves in our Church as a teacher to the 14 and 15 year old boys. He is also a Varsity Team Coach in the Boy Scouts and had a great time on a 3 day canoeing trip with the boys this summer. He absolutely loves working in these positions—probably because he doesn’t have a son of his own!
Jodi feels incredibly blessed to have met such wonderful new friends in Papillion. Annie has had a record number of doctor appointments since we moved here, and we are so touched with everyone’s kindness in welcoming Molly and Lexie into their homes while we’re away with Annie. Jodi has been kept incredibly busy as we’ve worked to get settled in our new home—everything from unpacking, decorating, and doing our own landscaping. Jodi has also kept busy as we’ve searched for and met a whole new team of doctors, therapists, and nurses for Annie; enrolled Annie in her new school programs and in-home nursing care; and set up Annie’s Medicaid waiver and insurance programs. We have been so blessed to have all these huge transitions go so smoothly, but desperately miss Annie’s medical team from
Jodi’s favorite way to relax is by reading a great book. She somehow managed to read 69 books this year and is always open to good book suggestions. Jodi currently serves in our Church as the secretary to the children’s organization. This has been a perfect fit for her and she’s loved serving in this position.
It’s truly been our busiest year of doctor appointments, and Jodi had her share as well. This fall she had two procedures to fix some painful varicose veins caused by three pregnancies. She first had an ovarian vein embolization, and more recently, a phlebectomy. She’s excited to have relief from her pain.
Annie, 7, has had the most exciting year of all of us. In August we discovered that the popping sound and feeling in her knee we’d noticed for several months was actually her kneecap dislocating causing her a lot of pain. She just had surgery to fix that knee as well as a heel cord lengthening on her ankle to help it bend better. Annie also had a sleep study which showed Annie was having 120 episodes of sleep apnea at night—some episodes lasting over a minute. To help resolve that, Annie had her tonsils and adenoids removed in October. Unfortunately, her follow-up sleep study showed that the surgery made no improvement in her sleep apnea. She’s been sleeping with oxygen, but will soon start CPAP to help decrease the number of apnea episodes.
Aside from all her health challenges this year, Annie has been a happy kid and thoroughly enjoys 2nd grade and all her friends and teachers at school. She still loves being read to and going for walks when it’s warm enough outside!
Molly, 4, started preschool this year and has really enjoyed it. She has a very curious and imaginative mind and its fun to hear the clever and funny things she says. She loves drawing, writing, building tents out of blankets, and creating things with play-doh. She also loves to dance and sing. We’ve encouraged her to take dance lessons, but she refuses, claiming she already knows how to dance!
Lexie, 2, is still our little baby, but growing quickly. Lexie loves being with her sisters and wants to be doing whatever Molly is doing. She has made lots of progress in her 
development this year and is no longer in physical therapy for her gross motor and speech delay. Once she discovered she could walk when she was 19 months old, she has really taken off. Now if we could just get her to talk better, she’d be a happier and less frustrated girl!
One of the highlights of our year was a trip to
Again, we are so grateful for such dear family and friends who have been so supportive this past year. We always appreciate people asking about Annie and keeping her in their prayers. Thank you so much. We hope everyone can take time this season to remember their blessings, especially the wonderful blessing of Christ’s birth and sacrifice for us. We wish all of you a very merry Christmas!
Love,
Justin, Jodi, Annie, Molly, and Lexie
Annie's Knee and Ankle Surgery
Annie's surgery went well on Friday. It took them about 2 1/2 hours to fix her dislocating kneecap as well as her tight right ankle.
To fix her knee, the doctor lengthened the tendon that was pulling her kneecap out laterally (to the outside of her leg), then he also inserted a donor tissue graft on the other side of her knee (medial side) to act as a tether to help hold her kneecap in place. To do that, they drilled into her kneecap where they placed one end of the tendon, and somehow secured it to the opposite side of her kneecap. The other end of the tendon was secured around a screw that was then screwed into the medial side of her femur. After examining her knee with a scope, they learned that no serious damage has been done by her chronically dislocating kneecap, except for some damage to the lateral side of her femur, but it shouldn't be a source of any kind of pain.
Annie's heel cord lengthening on her ankle was much simpler. The doctor detached the tendon at the bottom and reattached it higher up, so Annie can now bend her foot at a 90 degree angle (something she hasn't been able to do for almost a year!).
Annie was in recovery for about an hour before I was allowed to see her, and then I stayed with her in recovery for another hour. They had some difficulty trying to manage her pain, but she eventually got moved to her room around 1:00. She had received morphine and valium in recovery, but was still in a lot of pain, so around 2pm they gave her morphine on a pump as well as tylenol with codeine. Since then she has been very comfortable and asleep. She woke up for about a half hour to watch The Electric Company, but then fell back asleep. She's been tolerating her feeds well and we quickly bumped her up to her regular rate of 85 cc/hr.
She has a BRIGHT pink cast on her ankle going half way up her calf. Above that she has an immobilizing knee brace (so she can't bend her knee) that goes from the top of her pink cast up almost to her crotch. I haven't seen the incisions, but was told that under her cast, she had a 4" incision on her ankle from her heel cord lengthening. Her knee is wrapped in gauze and an ace bandage under the immobilizing brace, so I haven't seen those incisions yet either, but was told she had a 3" incision on each side of her knee. Pain management is going to be our biggest challenge over the next several days, maybe weeks. She'll need to keep the cast on her ankle for 6 weeks, and the knee brace on (with her knee straight) for 4 weeks.
Annie has been my hero this year as she's tolerated so much. At least her kneecap won't be a source of pain any longer once this is all healed! Thank you so much for all our family and friends who have been such a wonderful support to us. We appreciate all your thoughts and prayers on Annie's behalf.
Three days later, Annie's doing pretty well--just needs her pain meds right on time around the clock!
To fix her knee, the doctor lengthened the tendon that was pulling her kneecap out laterally (to the outside of her leg), then he also inserted a donor tissue graft on the other side of her knee (medial side) to act as a tether to help hold her kneecap in place. To do that, they drilled into her kneecap where they placed one end of the tendon, and somehow secured it to the opposite side of her kneecap. The other end of the tendon was secured around a screw that was then screwed into the medial side of her femur. After examining her knee with a scope, they learned that no serious damage has been done by her chronically dislocating kneecap, except for some damage to the lateral side of her femur, but it shouldn't be a source of any kind of pain.
Annie's heel cord lengthening on her ankle was much simpler. The doctor detached the tendon at the bottom and reattached it higher up, so Annie can now bend her foot at a 90 degree angle (something she hasn't been able to do for almost a year!).
Annie was in recovery for about an hour before I was allowed to see her, and then I stayed with her in recovery for another hour. They had some difficulty trying to manage her pain, but she eventually got moved to her room around 1:00. She had received morphine and valium in recovery, but was still in a lot of pain, so around 2pm they gave her morphine on a pump as well as tylenol with codeine. Since then she has been very comfortable and asleep. She woke up for about a half hour to watch The Electric Company, but then fell back asleep. She's been tolerating her feeds well and we quickly bumped her up to her regular rate of 85 cc/hr.
She has a BRIGHT pink cast on her ankle going half way up her calf. Above that she has an immobilizing knee brace (so she can't bend her knee) that goes from the top of her pink cast up almost to her crotch. I haven't seen the incisions, but was told that under her cast, she had a 4" incision on her ankle from her heel cord lengthening. Her knee is wrapped in gauze and an ace bandage under the immobilizing brace, so I haven't seen those incisions yet either, but was told she had a 3" incision on each side of her knee. Pain management is going to be our biggest challenge over the next several days, maybe weeks. She'll need to keep the cast on her ankle for 6 weeks, and the knee brace on (with her knee straight) for 4 weeks.
Annie has been my hero this year as she's tolerated so much. At least her kneecap won't be a source of pain any longer once this is all healed! Thank you so much for all our family and friends who have been such a wonderful support to us. We appreciate all your thoughts and prayers on Annie's behalf.
Annie about 3 hours after getting out of surgery.
Her BRIGHT pink cast!
Three days later, Annie's doing pretty well--just needs her pain meds right on time around the clock!
Thursday, December 17, 2009
Discouraging Post-Tonsillectomy Sleep Study Results
Annie's pulmonologist called me today with the results of her sleep study from last Monday night. Not good news. It looks like the tonsilloadenoidectomy did nothing to improve Annie's sleep apnea. She is still having 13 episodes of apnea each hour with oxygen sats dropping into the 70s. We're very discouraged and feel terrible for putting her through a surgery that had no benefit. Annie's snoring has improved--we no longer hear her snoring from the other room, but she's not breathing any better than before.
The pulmonologist called us with his report before our consultation appointment because of Annie's surgery tomorrow. The anesthesiologist needs to know that she is still a high-risk case. She has surprisingly always tolerated anesthesia very well however. Then next week we will go meet with the pulmonologist to discuss where we go from here. There are really only 3 options:
1) do nothing to treat her apnea and live with the side effects of poor sleep and eventual heart failure,
2) put Annie on CPAP which can be difficult to keep on a child, especially since Annie vomits regulary at night and sucks on a binky, or
3) give Annie a tracheotomy which would completely alter her quality of life and level of care required. Annie would lose her sweet voice making communication much more difficult also. A trach is something we've always decided against, so we are not considering that as an option.
At this point I think we're willing to try CPAP and if Annie tolerates it and her quality of sleep improves we'll consider it a success. We owe it to Annie to at least try such a non-invasive treatment, but we also realize that if she doesn't tolerate it, we feel comfortable stopping the CPAP and stopping treatment for her sleep apnea. That's the scariest option because we'll always be wondering if tonight is the night she'll stop breathing altogether. We also know that she will eventually develop heart failure if she continues to have apnea that's not treated, so we're just hoping that CPAP might be an easy adjustment for her and us as well. At this point, what difference does one more machine in her bedroom make? So please continue to keep Annie in your prayers--that she will be able to respond well to CPAP, and if not, that she can at least be kept as comfortable and happy as possible.
The pulmonologist called us with his report before our consultation appointment because of Annie's surgery tomorrow. The anesthesiologist needs to know that she is still a high-risk case. She has surprisingly always tolerated anesthesia very well however. Then next week we will go meet with the pulmonologist to discuss where we go from here. There are really only 3 options:
1) do nothing to treat her apnea and live with the side effects of poor sleep and eventual heart failure,
2) put Annie on CPAP which can be difficult to keep on a child, especially since Annie vomits regulary at night and sucks on a binky, or
3) give Annie a tracheotomy which would completely alter her quality of life and level of care required. Annie would lose her sweet voice making communication much more difficult also. A trach is something we've always decided against, so we are not considering that as an option.
At this point I think we're willing to try CPAP and if Annie tolerates it and her quality of sleep improves we'll consider it a success. We owe it to Annie to at least try such a non-invasive treatment, but we also realize that if she doesn't tolerate it, we feel comfortable stopping the CPAP and stopping treatment for her sleep apnea. That's the scariest option because we'll always be wondering if tonight is the night she'll stop breathing altogether. We also know that she will eventually develop heart failure if she continues to have apnea that's not treated, so we're just hoping that CPAP might be an easy adjustment for her and us as well. At this point, what difference does one more machine in her bedroom make? So please continue to keep Annie in your prayers--that she will be able to respond well to CPAP, and if not, that she can at least be kept as comfortable and happy as possible.
Wednesday, December 16, 2009
Molly's Preschool Christmas Program
Molly did a great job singing at her Preschool Christmas Program. Her teacher said Molly knows all the words to all the songs and holds the whole class together. As you can see, Molly had a great time!
She LOVES singing!
They sang Barney's 12 Days of Christmas and Molly was thrilled to be the "5 Shining Stars".
She LOVES singing!Monday, December 14, 2009
Why I Miss Texas...
We got hit by the huge storm going across the country last week. Schools were closed for 3 days. We got a total of about 12" of snow, winds near 40 mph, and wind chills in the -20s. Justin has been my hero as he's shoveled our driveway several times. I'm not sure why so many people told us that we probably don't need a snow blower here! I'm thinking we'll be buying one sometime this winter!
This is the view out the front of our house. Notice you can't even tell where the road is. And since we're in a brand new subdivision that's fairly empty, our street only got plowed once half-way through the storm at 5:00 at night!
This picture is of our backyard. The snow doesn't look deep at all... but that's because of all the wind causing huge drifts:
This is a picture of our patio underneath our deck. Some drifts were 4-5 feet tall. We hope the rest of the winter doesn't stay like this. Brrrr. I sure miss Texas at times!
This is the view out the front of our house. Notice you can't even tell where the road is. And since we're in a brand new subdivision that's fairly empty, our street only got plowed once half-way through the storm at 5:00 at night!
This picture is of our backyard. The snow doesn't look deep at all... but that's because of all the wind causing huge drifts:
This is a picture of our patio underneath our deck. Some drifts were 4-5 feet tall. We hope the rest of the winter doesn't stay like this. Brrrr. I sure miss Texas at times!
Thursday, December 10, 2009
Lexie's First Haircut
With so much going on lately, I've been a bit behind on posting updates... and on cutting Lexie's hair!
Here's her before shot. She was definitely in need of some taming.
Evening out the length and adding in some layers really helped bring out her curl. (I forgot to take an "after" picture when I was done cutting, but here's a cute view of her curls on her birthday--she was so excited to get Molly's old doll house.)
Here's her before shot. She was definitely in need of some taming.
Evening out the length and adding in some layers really helped bring out her curl. (I forgot to take an "after" picture when I was done cutting, but here's a cute view of her curls on her birthday--she was so excited to get Molly's old doll house.)
Wednesday, December 9, 2009
Jodi's Phlebectomy Surgery
My phlebectomy went really well. It was much more painful than I had expected--both during the procedure as well as after. I had a large and painful varicose vein removed from my leg that extended from my pelvis to half way down my calf. The doctor used just local anethesetic and made 34 small incisions about a half inch apart down the whole length of my vein. He then used a crochet hook-type tool to pull out small segments of the vein at a time.
At this same time as my phlebectomy, I also had a sclerosant foam injected into this same vein in my pelvis to seal off the vein higher up. These were the second procedures to try to relieve all my symptoms--the first being my ovarian vein embolization at the first part of November. All these vein problems have been due to the trauma of three pregnancies on my body. I'm thrilled now to have a new leg! I'm hoping that I will now be able to sit and stand without so much pain, and who knows... maybe even tolerate a future pregnancy.
Here are some before and after pictures. The red dots are obviously blood under the steri-strips, and once all the incisions are healed, my leg should look completely normal.
Before
24 Hours After
One week later
At this same time as my phlebectomy, I also had a sclerosant foam injected into this same vein in my pelvis to seal off the vein higher up. These were the second procedures to try to relieve all my symptoms--the first being my ovarian vein embolization at the first part of November. All these vein problems have been due to the trauma of three pregnancies on my body. I'm thrilled now to have a new leg! I'm hoping that I will now be able to sit and stand without so much pain, and who knows... maybe even tolerate a future pregnancy.
Here are some before and after pictures. The red dots are obviously blood under the steri-strips, and once all the incisions are healed, my leg should look completely normal.
Before
24 Hours After
One week laterFriday, November 13, 2009
Three Appointments in One Week is Too Much!
Annie had three doctor appointments this week. I would never intentionally schedule a crazy week like this, but when we've been waiting six months to get into see two of these doctors, we just take what we can get. It also didn't help that Justin has been away at a pharmacy conference this week. I'm ready for a break from doctor appointments!
On Tuesday we finally got in to see our new urologist here for the first time. Annie has been suffering from chronic UTIs for the last 2 years--having about one UTI every other month. Our pediatrician just recently put Annie on prophylactic antibiotics to help prevent them until we could get in to see the urologist, and they've helped dramatically. So we were a bit disappointed, especially after waiting for 2 hours, when the urologist suggested just keeping her on the prophylactic antibiotics, even though he recognized that the Cipro she's on would have been one of his last choices of antibiotics to use prophylactically. So we were frustrated that he didn't want to put her on something better or safer or one that doesn't build a resistance so quickly, but since she is already resistant to so many, I guess that makes it hard.
The urologist did decide to run all the same tests again that we had done in Austin (VCUG, urodynamics test, and renal sonogram) but the next openings for those tests aren't until March. Oh well, I feel over-scheduled with doctor appointments now anyway, and in the meantime, the Cipro is still working.
On Wednesday Annie had a routine ophthalmology appointment. It was so super fast--I'm so grateful. Annie's vision appears straight--we've noticed even less crossing since we cut her baclofen dose in half.
On Thursday, we finally were able to get in to see our new neurologist here for the first time. He was so wonderful in asking about her complete history to really get a good idea of the type of seizures she's had in the past and what she's having now, as well as the different drugs she's been on to control her seizures. He was genuinely interested in her and was a fantastic listener--which we always love! He spent well over half an hour with us reviewing Annie's history and plan for treatment.
Annie's been on vigabatrin for 7 years now and the neurologist was a little surprised at that, but agreed that if it's working, we'll keep her on it. Although we all decided that we might want to get her off of it in the near future and try something else. Vigabatrin is known to cause peripheral vision loss and because of such serious side effects, was only FDA approved a few months ago--we've been getting it from Canada for 7 years. But the FDA is putting major restrictions on who can prescribe it and how patients can get it. So fortunately, our ophthalmologist and neurologist have been patient with us in getting all the paperwork completed so we can start receiving this drug from the U.S. and having insurance start paying for it.
We're grateful for the relatively smooth transition we've been able to make as we've moved, and we've met some great new doctors here for Annie, but we will always miss our team of doctors from Texas, most of which knew Annie from the day she was born. I'm also grateful to all my friends who so frequently and kindly welcome Lexie and Molly into their homes while I'm at all of Annie's appointments. We've truly been blessed with wonderful friends!
On Tuesday we finally got in to see our new urologist here for the first time. Annie has been suffering from chronic UTIs for the last 2 years--having about one UTI every other month. Our pediatrician just recently put Annie on prophylactic antibiotics to help prevent them until we could get in to see the urologist, and they've helped dramatically. So we were a bit disappointed, especially after waiting for 2 hours, when the urologist suggested just keeping her on the prophylactic antibiotics, even though he recognized that the Cipro she's on would have been one of his last choices of antibiotics to use prophylactically. So we were frustrated that he didn't want to put her on something better or safer or one that doesn't build a resistance so quickly, but since she is already resistant to so many, I guess that makes it hard.
The urologist did decide to run all the same tests again that we had done in Austin (VCUG, urodynamics test, and renal sonogram) but the next openings for those tests aren't until March. Oh well, I feel over-scheduled with doctor appointments now anyway, and in the meantime, the Cipro is still working.
On Wednesday Annie had a routine ophthalmology appointment. It was so super fast--I'm so grateful. Annie's vision appears straight--we've noticed even less crossing since we cut her baclofen dose in half.
On Thursday, we finally were able to get in to see our new neurologist here for the first time. He was so wonderful in asking about her complete history to really get a good idea of the type of seizures she's had in the past and what she's having now, as well as the different drugs she's been on to control her seizures. He was genuinely interested in her and was a fantastic listener--which we always love! He spent well over half an hour with us reviewing Annie's history and plan for treatment.
Annie's been on vigabatrin for 7 years now and the neurologist was a little surprised at that, but agreed that if it's working, we'll keep her on it. Although we all decided that we might want to get her off of it in the near future and try something else. Vigabatrin is known to cause peripheral vision loss and because of such serious side effects, was only FDA approved a few months ago--we've been getting it from Canada for 7 years. But the FDA is putting major restrictions on who can prescribe it and how patients can get it. So fortunately, our ophthalmologist and neurologist have been patient with us in getting all the paperwork completed so we can start receiving this drug from the U.S. and having insurance start paying for it.
We're grateful for the relatively smooth transition we've been able to make as we've moved, and we've met some great new doctors here for Annie, but we will always miss our team of doctors from Texas, most of which knew Annie from the day she was born. I'm also grateful to all my friends who so frequently and kindly welcome Lexie and Molly into their homes while I'm at all of Annie's appointments. We've truly been blessed with wonderful friends!
Tuesday, November 3, 2009
Jodi's Surgery Update
Surgery went very well. I only received local anesthetic and some versed, so I was able to watch the whole procedure. I was in a radiological suite with an x-ray camera over my abdomen and 6 monitors from which the doctor worked. It was fascinating to watch them work.
The procedure I had done was an embolization of the ovarian vein. Because of the stress that 3 pregnancies has had on my body, I developed pelvic congestion syndrome where the ovarian veins become incompetent causing blood to pool on the pelvic floor. It wasn't until today that I saw the "before" images. The vein appeared as a nice straight pencil-thin line then gradually swelled to maybe 20 times the normal size, then eventually turned into literally a round pool of collected blood. The doctor said he rarely sees this condition quite as bad as I've had it--said my images should be in a textbook!
So he inserted a catheter into the vein and placed 13 spring-like, metal coils over a 7 inch section of vein. The coils then released a clotting agent as they sprung open inside the vein, giving me 100% blockage in the incompetent vein now. This is not a picture of me, but one I found online that looked somewhat similar to my "after" images. I have a few more coils that what this picture shows.
I was surprised at how easily I tolerated the procedure, although the versed did have its side effects for the rest of the day. Now I'm just not supposed to lift anything for a couple days--harder said than done with an active 2 year old and a 50 lb daughter in a wheelchair! Now I just have to wait til December 8th for my phlebectomy which will give me the most relief from my symptoms.
The procedure I had done was an embolization of the ovarian vein. Because of the stress that 3 pregnancies has had on my body, I developed pelvic congestion syndrome where the ovarian veins become incompetent causing blood to pool on the pelvic floor. It wasn't until today that I saw the "before" images. The vein appeared as a nice straight pencil-thin line then gradually swelled to maybe 20 times the normal size, then eventually turned into literally a round pool of collected blood. The doctor said he rarely sees this condition quite as bad as I've had it--said my images should be in a textbook!
So he inserted a catheter into the vein and placed 13 spring-like, metal coils over a 7 inch section of vein. The coils then released a clotting agent as they sprung open inside the vein, giving me 100% blockage in the incompetent vein now. This is not a picture of me, but one I found online that looked somewhat similar to my "after" images. I have a few more coils that what this picture shows.
I was surprised at how easily I tolerated the procedure, although the versed did have its side effects for the rest of the day. Now I'm just not supposed to lift anything for a couple days--harder said than done with an active 2 year old and a 50 lb daughter in a wheelchair! Now I just have to wait til December 8th for my phlebectomy which will give me the most relief from my symptoms.
Saturday, October 31, 2009
Halloween
We had a fun Halloween this year. The girls got dressed up for our ward's trunk-or-treat night on Tuesday. Lexie was a bumblebee, Annie was Snow White, and Molly was a princess.
Then on Halloween, we carved a pumpkin. Well, actually Justin did all the work, but the kids had fun watching. Annie painted a pumpkin at school earlier this week.
Since we went trunk-or-treating earlier in the week and got plenty of candy, we decided to do something different on Halloween. We decided to go to the zoo. There was hardly anyone there so it felt like we had the place to ourselves and could get right up close to the cages. It was the most fun we've ever had at the zoo before. Luckily it was a nice day in the 60's. We think we might make it a tradition every Halloween if the weather will always be this nice.
Then on Halloween, we carved a pumpkin. Well, actually Justin did all the work, but the kids had fun watching. Annie painted a pumpkin at school earlier this week.
Since we went trunk-or-treating earlier in the week and got plenty of candy, we decided to do something different on Halloween. We decided to go to the zoo. There was hardly anyone there so it felt like we had the place to ourselves and could get right up close to the cages. It was the most fun we've ever had at the zoo before. Luckily it was a nice day in the 60's. We think we might make it a tradition every Halloween if the weather will always be this nice.
Tuesday, October 27, 2009
Molly's a Hair Stylist!
This is how I found Lexie after I noticed how quietly she and Molly had been playing. Molly decided to "style" Lexie's hair and was very proud of how beautiful she made Lexie look.
Thursday, October 22, 2009
Lexie's Catching Up!
We had Lexie's 6 month review today with her physical therapist. Lexie has made amazing progress in her development and is doing so well! She is still lagging behind just a bit in her gross motor development and language skills, but at this point is still considered to be in the "normal" range. She has made such great strides that she is actually being discharged from her Early Intervention program! We are so proud of Lexie and all the work she's done to get caught up on her development!
Wednesday, October 21, 2009
Jodi's MRI and Sonogram Results
Three pregnancies have not been kind to my body, especially my first with 24 hours of labor and over 3 hours of pushing. I've had severe varicose veins in my right leg and pelvis for over 5 years now and have resolved to never have any more children unless I get this pain fixed. So I started the process a couple weeks ago.
I first had a sonogram that showed that the blood flow in these veins in my leg is actually going the opposite direction than it should. Perforating veins connect deep veins to superficial veins. Blood is supposed to return to the heart from these superficial veins, through perforating veins, into deep veins. I have a perforating vein that has incompetent valves actually allowing blood to flow from the deep veins into the superficial veins--thus the source of a lot of my pain. That superficial vein also has several bad valves along the entire length of my leg. To fix this, I'm having surgery in December. First they will use microwave energy to seal off the perforating vein. Then they will do a phlebectomy to remove the superficial vein. They'll make several small incisions the whole length of my leg, and remove the vein in small pieces.
But before those procedures can be done, they have to treat the more underlying cause in my pelvis. I had an MRI last Monday to allow the doctors to watch the blood flow and see my vein sizes in the pelvis. Of my two ovarian veins, one is "huge" (as the doctor said), and the other is also rather enlarged. In a couple weeks I will be having surgery to fix this. A radiologist will do an embolization procedure where he'll insert a catheter into the vein up into the problem area and insert a blocking agent into the vein that will prevent blood flow into the bad veins, essentially shutting them down. Blood will then be re-routed through other neighboring veins.
I have high hopes that these procedures will be successful in eliminating my pain. Who knows, maybe we'll even consider having more children.
I first had a sonogram that showed that the blood flow in these veins in my leg is actually going the opposite direction than it should. Perforating veins connect deep veins to superficial veins. Blood is supposed to return to the heart from these superficial veins, through perforating veins, into deep veins. I have a perforating vein that has incompetent valves actually allowing blood to flow from the deep veins into the superficial veins--thus the source of a lot of my pain. That superficial vein also has several bad valves along the entire length of my leg. To fix this, I'm having surgery in December. First they will use microwave energy to seal off the perforating vein. Then they will do a phlebectomy to remove the superficial vein. They'll make several small incisions the whole length of my leg, and remove the vein in small pieces.
But before those procedures can be done, they have to treat the more underlying cause in my pelvis. I had an MRI last Monday to allow the doctors to watch the blood flow and see my vein sizes in the pelvis. Of my two ovarian veins, one is "huge" (as the doctor said), and the other is also rather enlarged. In a couple weeks I will be having surgery to fix this. A radiologist will do an embolization procedure where he'll insert a catheter into the vein up into the problem area and insert a blocking agent into the vein that will prevent blood flow into the bad veins, essentially shutting them down. Blood will then be re-routed through other neighboring veins.
I have high hopes that these procedures will be successful in eliminating my pain. Who knows, maybe we'll even consider having more children.
Monday, October 19, 2009
72 Hours After Surgery
We are all shocked at how well Annie is doing since her surgery on Friday. She is still needing some suctioning around the clock and is on 1.5 L of O2 at night. We're still giving her Lortab, but not quite as frequently as before. She's even making some noises--must not hurt her too bad to use her voice! She's enjoying being up in her wheelchair and playing with toys on her tray. She's still getting really tired and is sleeping a lot, but overall, doing great. We feel so, so blessed and are so grateful for everyone's prayers for her.
Saturday, October 17, 2009
Update on Annie's Recovery
Annie did well last night in the ICU. We'll actually be going home today. They took out her nasal breathing tube this morning and her sats are 95-98 without oxygen. She still requires a lot of suctioning, so it's good we already have a suction machine and oxygen concentrator at home. She'll probably be on Lortab around the clock for a week. She's only had one episode of apnea since surgery with sats at 72. We'll update more later.
Friday, October 16, 2009
Annie's Out of Surgery
Annie just got out of surgery and now she's in the ICU. She had her tonsils and adenoids removed as well as a suspicious mole removed. We've been very concerned about her ability to breathe on her own since she has such low muscle tone, but things have gone fairly well so far. She still has a small nasal breathing tube, but we hope to be able to take that out soon. Otherwise, Annie tolerated surgery fairly well--the next couple days will be tough for her though. We appreciate everyone's prayers for her.
Wednesday, September 30, 2009
Getting more answers...
We have had a record amount of doctor appointments for Annie in the last month, and I want to express my deep appreciation to everyone who has been so helpful in watching Molly and Lexie while I take Annie to all her appointments. I'm also so grateful to everyone for keeping her in your thoughts and prayers and for asking about how she's doing. We feel so loved when people express a genuine concern for her. We have been so blessed to have such wonderful friends who are so generous in helping us during such a busy and stressful time. I have so many dear friends who so willingly (and repeatedly) welcome Molly and Lexie into their homes. We are also so grateful for family that continually ask about her and listen to us endlessly talk about her and her appointments and help us think through all the decisions we have to make. We appreciate our family for being such a wonderful support. Thank you, thank you!
We continue to feel like we're making progress towards Annie's treatments. I took Annie today to see the sports medicine doctor that will be performing her knee surgery. He said she would definitely benefit from surgery to keep her kneecap from dislocating. The surgery will involve two parts: first, he will release the tight tendon on the outside of her knee that has been pulling the kneecap out; second, he will use a donor tissue graft to connect her kneecap to her femur on the inside of her knee to act as a tether to hold on to her kneecap to keep it from sliding out. Typically the tissue used for the graft comes from the patient's hamstring, however, since Annie's hamstrings are so small and atrophied and have unpredictable tone, a donor graft is required.
Fortunately, recovery shouldn't be too bad. Annie will stay in the hospital one night and wear the same type of knee brace after surgery that she is currently wearing. She'll also have a cast on her foot since the orthopedist will be releasing Annie's ankle tendon at the same time. Supposedly she'll be on pain meds for a week, and have her ankle cast for 6 weeks, then a brand new pair of AFOs. Unfortunately, the ENT suggests Annie have a full 6 weeks of recovery from her tonsilloadenoidectomy before her throat will be healed well enough to have her intubated again for her knee and ankle surgery. So she'll need to endure her dislocating knee longer than we expected, but at least this way we'll know that Annie will be at her healthiest and strongest going into her second surgery. (The tonsilloadenoidectomy must be performed before her knee and ankle surgery due to the risk of operating on her with an obstructed airway.)
The tonsilloadenoidectomy will be the more difficult surgery for Annie and we appreciate your prayers for her as she goes into this procedure. The outcome is unpredictable due to Annie's irregular muscle tone. The ENT said in some rare cases in children with low tone like Annie, the tonsils actually act as a stent to hold open the airway and removing the tonsils in those cases has actually caused the airway to collapse even more. If Annie's airway after surgery continues to be obstructed, they will intubate her. If she fails continual extubations they will start pushing us to do a trach.
The other risk is that if an emergency situation arises in surgery, standard procedure is to do a trach. We realize that trachs are reversible, but we acknowledge that in a child like Annie, once given a trach, she will probably never come off of it. A trach has always been something that we've said we would not put Annie through, and although we try to just take each situation as they come, we feel that a trach for Annie would be a major change to her quality of life (hers and ours). It would put her at a whole new level of daily care needs and would limit certain activities that she could participate in. It would also require even more medical equipment to have with Annie at all times, and require more trained supervision of her at all times.
So even though the doctor anticipates no need for a trach, we are still somewhat nervous because Annie's tone is so unpredictable. So please keep Annie in your prayers and pray that she's able to have a smooth surgery and respond well to the procedure. She is now scheduled for her tonsilloadenoidectomy (and a mole removal) on October 16th. Her knee and ankle surgery is not scheduled yet, but will most likely be the first week of December.
We continue to feel like we're making progress towards Annie's treatments. I took Annie today to see the sports medicine doctor that will be performing her knee surgery. He said she would definitely benefit from surgery to keep her kneecap from dislocating. The surgery will involve two parts: first, he will release the tight tendon on the outside of her knee that has been pulling the kneecap out; second, he will use a donor tissue graft to connect her kneecap to her femur on the inside of her knee to act as a tether to hold on to her kneecap to keep it from sliding out. Typically the tissue used for the graft comes from the patient's hamstring, however, since Annie's hamstrings are so small and atrophied and have unpredictable tone, a donor graft is required.
Fortunately, recovery shouldn't be too bad. Annie will stay in the hospital one night and wear the same type of knee brace after surgery that she is currently wearing. She'll also have a cast on her foot since the orthopedist will be releasing Annie's ankle tendon at the same time. Supposedly she'll be on pain meds for a week, and have her ankle cast for 6 weeks, then a brand new pair of AFOs. Unfortunately, the ENT suggests Annie have a full 6 weeks of recovery from her tonsilloadenoidectomy before her throat will be healed well enough to have her intubated again for her knee and ankle surgery. So she'll need to endure her dislocating knee longer than we expected, but at least this way we'll know that Annie will be at her healthiest and strongest going into her second surgery. (The tonsilloadenoidectomy must be performed before her knee and ankle surgery due to the risk of operating on her with an obstructed airway.)
The tonsilloadenoidectomy will be the more difficult surgery for Annie and we appreciate your prayers for her as she goes into this procedure. The outcome is unpredictable due to Annie's irregular muscle tone. The ENT said in some rare cases in children with low tone like Annie, the tonsils actually act as a stent to hold open the airway and removing the tonsils in those cases has actually caused the airway to collapse even more. If Annie's airway after surgery continues to be obstructed, they will intubate her. If she fails continual extubations they will start pushing us to do a trach.
The other risk is that if an emergency situation arises in surgery, standard procedure is to do a trach. We realize that trachs are reversible, but we acknowledge that in a child like Annie, once given a trach, she will probably never come off of it. A trach has always been something that we've said we would not put Annie through, and although we try to just take each situation as they come, we feel that a trach for Annie would be a major change to her quality of life (hers and ours). It would put her at a whole new level of daily care needs and would limit certain activities that she could participate in. It would also require even more medical equipment to have with Annie at all times, and require more trained supervision of her at all times.
So even though the doctor anticipates no need for a trach, we are still somewhat nervous because Annie's tone is so unpredictable. So please keep Annie in your prayers and pray that she's able to have a smooth surgery and respond well to the procedure. She is now scheduled for her tonsilloadenoidectomy (and a mole removal) on October 16th. Her knee and ankle surgery is not scheduled yet, but will most likely be the first week of December.
Thursday, September 24, 2009
Another Visit with Annie's Orthopedist
We met with Annie's orthopedist again today since Annie's kneecap seems to be too high on her leg ever since she quit wearing the immobilizing straight leg brace. They did x-rays to check it out and said that her kneecap actually is in a pretty good location and not considered dislocated towards her thigh. However, the groove that her kneecap normally sits in is very shallow and her kneecap is still dislocating to the side of her knee every time she bends her knee.
It is very painful for her and even after the brace specialist evaluated her knee brace, they still could not get the brace to work in preventing the dislocations. But because of all that, the orthopedist is now agreeing that Annie needs to have surgery on her knee. They will release the tight tendon that is pulling her kneecap out of place and also tighten the opposite tendon to help pull the opposite direction on her kneecap. So we will meet with the sports medicine doctor who will perform that surgery, and then try to coordinate it with her heel cord lengthening and tonsilectomy/adenoidectomy. Oh, and a mole removal as well! Annie should be a brand new kid after all of this! We're praying for good results and a quick recovery. In the meantime, we're trying to keep her as healthy and strong as possible to help her endure all of these procedures well.
It is very painful for her and even after the brace specialist evaluated her knee brace, they still could not get the brace to work in preventing the dislocations. But because of all that, the orthopedist is now agreeing that Annie needs to have surgery on her knee. They will release the tight tendon that is pulling her kneecap out of place and also tighten the opposite tendon to help pull the opposite direction on her kneecap. So we will meet with the sports medicine doctor who will perform that surgery, and then try to coordinate it with her heel cord lengthening and tonsilectomy/adenoidectomy. Oh, and a mole removal as well! Annie should be a brand new kid after all of this! We're praying for good results and a quick recovery. In the meantime, we're trying to keep her as healthy and strong as possible to help her endure all of these procedures well.
Tuesday, September 15, 2009
Annie's ENT Appointment
We met with the ENT for the first time today. He said Annie's soft tissue neck x-ray showed mild enlargement of her adenoids. He wasn't able to get the sleep study report before our appointment, but after telling him some of the statistics from it, he agreed that Annie would most likely benefit from a tonsilectomy/adenoidectomy, but doesn't want to schedule anything yet, until he sees the sleep study himself. Fortunately, he's willing to combine his surgery with her ankle surgery, so that will be nice.
His concern is that Annie's space between the back of her tongue and the back of her throat is much smaller than a typical child's. So he's not certain that the tonsilectomy/adenoidectomy will resolve her sleep apnea, but said it might open things up a little more for her. Also because of Annie's low muscle tone in her throat, he says surgery might not completely resolve the apnea. In that case he said a trach might be an option, but we've always decided against giving Annie a trach. Her level of care and quality of life would dramatically change, and not just for her, but for the whole family. Our goal has always been to keep Annie happy and comfortable and able to enjoy her life to the fullest, and we feel a trach would limit her abilities to meet that goal.
On the other hand, the doctor said that if we don't treat her sleep apnea, Annie would eventually experience heart failure, working so hard to get oxygen to her body. So for now, we're really praying that the tonsilectomy/adenoidectomy will help at least reduce the number of sleep apnea episodes she has each night. We also might consider putting her on C-PAP, but that has its own set of challenges as well with all the vomiting she does at night, as well as her need to suck on a binky. We are also having a hard enough time just keeping an oxygen cannula on her at night and don't think she'd do any better with a C-PAP mask. I guess we'll cross that bridge when we get there, once we see how successful the tonsilectomy/adenoidectomy is.
After Annie's ENT appointment we went to pick up Annie's new knee brace, but because her leg muscles are so atrophied and her joints are the largest parts of her legs, they couldn't even get the new brace on her. But after they saw that Annie's kneecap is out of place again--this time to the top--they found a completely different brace that will help hold the kneecap down in place. The problem is that we can't get her kneecap back into place. So she's wearing the new brace to prevent her kneecap from moving around, although her kneecap is still up towards her thigh. We're going back to the orthopedist next week to address this issue again. We're really just hoping and praying that they doctor will operate on her knee when she has her ankle surgery and tonsilectomy/adenoidectomy, and then we can stop worrying about her kneecap dislocating and the pain it's giving her.
His concern is that Annie's space between the back of her tongue and the back of her throat is much smaller than a typical child's. So he's not certain that the tonsilectomy/adenoidectomy will resolve her sleep apnea, but said it might open things up a little more for her. Also because of Annie's low muscle tone in her throat, he says surgery might not completely resolve the apnea. In that case he said a trach might be an option, but we've always decided against giving Annie a trach. Her level of care and quality of life would dramatically change, and not just for her, but for the whole family. Our goal has always been to keep Annie happy and comfortable and able to enjoy her life to the fullest, and we feel a trach would limit her abilities to meet that goal.
On the other hand, the doctor said that if we don't treat her sleep apnea, Annie would eventually experience heart failure, working so hard to get oxygen to her body. So for now, we're really praying that the tonsilectomy/adenoidectomy will help at least reduce the number of sleep apnea episodes she has each night. We also might consider putting her on C-PAP, but that has its own set of challenges as well with all the vomiting she does at night, as well as her need to suck on a binky. We are also having a hard enough time just keeping an oxygen cannula on her at night and don't think she'd do any better with a C-PAP mask. I guess we'll cross that bridge when we get there, once we see how successful the tonsilectomy/adenoidectomy is.
After Annie's ENT appointment we went to pick up Annie's new knee brace, but because her leg muscles are so atrophied and her joints are the largest parts of her legs, they couldn't even get the new brace on her. But after they saw that Annie's kneecap is out of place again--this time to the top--they found a completely different brace that will help hold the kneecap down in place. The problem is that we can't get her kneecap back into place. So she's wearing the new brace to prevent her kneecap from moving around, although her kneecap is still up towards her thigh. We're going back to the orthopedist next week to address this issue again. We're really just hoping and praying that they doctor will operate on her knee when she has her ankle surgery and tonsilectomy/adenoidectomy, and then we can stop worrying about her kneecap dislocating and the pain it's giving her.
Monday, September 14, 2009
Sunrise
Justin caught the sunrise this morning. This was the view from our deck. Pretty spectacular!
Sunday, September 13, 2009
Molly's Hair--Straight Vs. Curly
Molly asked for me to straighten her hair today, and since we had some extra time, I agreed. It took about 30 minutes. She wishes I would straighten it every day.
Tuesday, September 8, 2009
Annie's Sleep Study Results
We met with the pulmonologist to review Annie's sleep study results. We were stunned to say the least. We've known she's had sleep apnea for several years because we've heard it several times when we've shared a room with her or she's fallen asleep on our laps. Never did we think that it was really THIS bad!
Here are some statistics from her sleep study: Annie had 118 episodes of sleep apnea--an average of 13 per hour! The longest apnea episode lasted 60 seconds and her lowest oxygen saturation level was 75. Fortunately, her carbon dioxide levels were maintained within a normal range the entire night. Annie snored most of the night, very loudly at times. She had 216 episodes of arousal (a normal adult arouses 5-6 times an hour).
Annie also showed paradoxical breathing patterns sustained through the entire night. Paradoxical breathing is when the lungs and diaphragm are working against each other to breathe. Most patients with sleep apnea only show paradoxical breathing during an actual apnea episode. Annie showed paradoxical breathing the entire night--something our pulmonologist has never seen before.
Our pulmonogist believes her sleep apnea is due to enlarged tonsils and possibly large adenoids. Also, because of her low muscle tone around her head and neck, her airway collapses easily when she's asleep. Her baclofen medication to help with muscle tightness in her leg and arm might also be further weakening her throat muscles.
Before we left the hospital, they did a soft tissue neck x-ray to get a better picture of Annie's tonsils and adenoids. The next step is to meet with an ENT to discuss a tonsillectomy and adenoidectomy. Two months after surgery she will have another sleep study to see how successful the surgery was. If she is still having sleep apnea she might need to use a C-PAP machine, but we hope to avoid that at all costs. Fortunately, our orthopedist is willing to combine Annie's ankle surgery with her tonsillectomy/adenoidectomy. In the meantime, we now have an oxygen machine for Annie at night to help prevent her oxygen saturation levels from dipping too low during her apnea episodes. The trick now is to figure out how to get her to not rip off the nasal cannula in the night!
Here are some statistics from her sleep study: Annie had 118 episodes of sleep apnea--an average of 13 per hour! The longest apnea episode lasted 60 seconds and her lowest oxygen saturation level was 75. Fortunately, her carbon dioxide levels were maintained within a normal range the entire night. Annie snored most of the night, very loudly at times. She had 216 episodes of arousal (a normal adult arouses 5-6 times an hour).
Annie also showed paradoxical breathing patterns sustained through the entire night. Paradoxical breathing is when the lungs and diaphragm are working against each other to breathe. Most patients with sleep apnea only show paradoxical breathing during an actual apnea episode. Annie showed paradoxical breathing the entire night--something our pulmonologist has never seen before.
Our pulmonogist believes her sleep apnea is due to enlarged tonsils and possibly large adenoids. Also, because of her low muscle tone around her head and neck, her airway collapses easily when she's asleep. Her baclofen medication to help with muscle tightness in her leg and arm might also be further weakening her throat muscles.
Before we left the hospital, they did a soft tissue neck x-ray to get a better picture of Annie's tonsils and adenoids. The next step is to meet with an ENT to discuss a tonsillectomy and adenoidectomy. Two months after surgery she will have another sleep study to see how successful the surgery was. If she is still having sleep apnea she might need to use a C-PAP machine, but we hope to avoid that at all costs. Fortunately, our orthopedist is willing to combine Annie's ankle surgery with her tonsillectomy/adenoidectomy. In the meantime, we now have an oxygen machine for Annie at night to help prevent her oxygen saturation levels from dipping too low during her apnea episodes. The trick now is to figure out how to get her to not rip off the nasal cannula in the night!
Saturday, September 5, 2009
For Fun
Recently we went to the Air Show at Offutt Air Force Base near our house. It was really quite incredible.
We also spent one evening walking at the pedestrian bridge that crosses the Missouri River into Iowa. We have loved this mild Nebraska summer.
We also spent one evening walking at the pedestrian bridge that crosses the Missouri River into Iowa. We have loved this mild Nebraska summer.
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