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 Omaha, Nebraska to immediately start work at Creighton University’s School of Pharmacy teaching Pharmacokinetics. He has absolutely loved his new career and getting to know his students. It was a difficult and busy first semester, but he learned a lot and looks forward to more teaching, as well as getting started on his own research projects.

Jodi and the girls moved up to Papillion, Nebraska five weeks after Justin, once our Texas house sold and our new house was done being built. We were truly blessed to have that transition go so smoothly. We have really enjoyed our new home that is more accessible for Annie and her needs.

In May we all took a trip back to Austin, Texas to watch Justin officially graduate with his Ph.D. in Pharmaceutics from the University of Texas. It was a very exciting and long-awaited event. We are all so proud of him!

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 Texas.

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 2^nd 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 Utah to visit both sides of the family. We went to Snowbird, Thanksgiving Point, and an aquarium with the Tolmans. The Oldroyds had a family reunion near Zion’s National Park and we all had a great time hiking, playing games, and swimming.

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.

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!

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.

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!

They sang Barney's 12 Days of Christmas and Molly was thrilled to be the "5 Shining Stars".

She LOVES singing!

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!

Lexie is 2 Years Old!

Happy Birthday, Lexie!

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.)

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

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!

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.