Help Us Celebrate Annie's 10th Birthday!

In honor of Annie on her 10th birthday, we are hoping to raise money to support the Aicardi Syndrome Foundation.  We will be collecting tax-deductible donations with checks made payable to the Aicardi Syndrome Foundation.  Donation information is also available online at the Aicardi Syndrome Foundation website to mail a check directly to the Foundation or to make a donation online with a credit card. 

The Aicardi Syndrome Foundation has been an incredible blessing in our lives--connecting us with other families dealing with our same challenges.  We find great strength and comfort by regularly connecting with Aicardi families who are now some of our dearest friends.  We also love attending all the Aicardi Family Conferences where we get to strengthen and support each other in the unique challenges our daughters face.  Donations to the Aicardi Syndrome Foundation help provide funding for these conferences as well as for medical equipment for affected children. Money donated to the Foundation also helps researchers at Baylor University and the University of California at San Francisco conduct medical research into the causes of Aicardi Syndrome and agenesis of the corpus collosum.  Thank you so much for considering a contribution to this Foundation that means so much to our family.

I can't believe Annie is turning 10!  We are celebrating big this year--10 is a HUGE milestone for her!  Before Annie was born, we were told that she had some very serious brain malformations and we were told that if she survived birth, she might only live a few days or months.  We never thought that we would be so fortunate to now be celebrating her 10th birthday!  The past 10 years have brought many emotional and physical challenges, but all of those struggles pale in comparison to the wonderful blessings our family has experienced by having Annie in our family.  She brightens our days and helps us keep a proper perspective in our lives.  She has taught us more than we could have learned any other way.  We are so grateful for her and the sweet spirit she brings into our home.  Our lives would not be the same without her. We love you Annie, and hope you have a fantastic 10th birthday! 


To learn more about Annie and her diagnosis, please read Annie's Story, or her Frequently Asked Questions page.  To learn more about Aicardi Syndrome please visit the Aicardi Syndrome Foundation website.

Lessons From My Daughter With Special Needs

I have been blessed to have many learning experiences in the past 10 years since I was told the baby I was carrying had severe brain anomalies and might not survive birth.  Miraculously, our sweet Annie not only survived birth, but has grown to be a beautiful 10 year old—a milestone doctors told us she would never reach.  

About 5 years ago, a friend asked me, “What have you learned from Annie?”  I paused before answering, a little surprised at her question.  I wasn’t sure what kind of response she was expecting, but I quickly told her about traits Annie has helped me develop and mentioned how much medical information I have learned from caring for Annie as well.  The conversation didn’t go on long, but since then I’ve often reflected on what Annie is continuing to teach me.

Annie teaches all those that come in contact with her greater lessons than could be taught anywhere else.  She has taught me about compassion, service, patience, enduring, unconditional love, humility…  A complete list of everything Annie has taught me could surely fill a book, but here are just 25 things I have learned from my 10 year old daughter who has Aicardi Syndrome.

1.    God doesn’t always give us what we want, but we know He will always give us what we need, even when it’s not what we think we need.  I need Annie.  I never would have asked to have a child with such severe disabilities, yet now I can’t imagine my life without her. 

2.    Christ suffered not only for our sins, but for all our heartaches, grief, and physical suffering.  I often think that Annie is able to handle so much pain and suffering because she knows how to turn all of that over to Heavenly Father and she knows He'll always take it from her and help her through it.

3.    Eternal families are real.  The uniting of families forever inside the holy temple is real and I know that our family will live with Annie forever.  She will be made whole through the resurrection and we will feel her hugs, be able to speak with her, and probably continue to learn even more from her in the eternities.

4.    The Holy Ghost brings real peace and comfort.  We won’t always know “why” in this life, but we have faith that God has a perfect plan for us and we can enjoy the journey and trust that he has only good things in store for us.

5.    The Lord continues to work miracles and show us His tender mercies.  We may not receive the miracles we pray for, but He gives us the miracles that He knows we need.

6.    Annie has taught me how to better serve others, especially to serve without having to ask “What can I do to help?”  Just go do it!

7.    I’m not alone.  Because of Annie, I have been able to meet amazing mothers who also have daughters with Aicardi Syndrome.  My life would not be as rich if I did not have those wonderful women in my life.  I have also learned about true friendship and have learned the power and strength that close friends and family can be. 

8.    The veil between heaven and earth is very thin.  I often get the sense from Annie that she sees angels and I don’t doubt that she does. I know Annie is close to the Spirit and has a close relationship with her Heavenly Father.  She is a celestial being here on earth and more perfect than any of us.

9.    I have definitely learned more biology, medical terms, acronyms, procedures, and insurance processes and lingo than I could have learned from any class in college.  I’ve learned how to deal with frequent seizures, put a chronically dislocated knee back in place, how to change a gastric feeding button, use suction, prepare and run pump feedings, etc. 

10.    I’ve learned that just because a person can’t talk doesn’t mean they don’t have anything to say--we just need to learn how to listen.  And a person who can’t talk may have the most to teach us about life. 

11.    Annie is a special spirit in a frail frame, yet she can be so much stronger than any of us.

12.    Most people have good intentions, and they don’t mean to be insensitive. On the flip side, I’ve learned how to better communicate with people facing their own trials and grieving their own losses.

13.    We shouldn’t compare our trials to anyone else’s.  We can’t relate to other’s trials because no matter what, we truly won’t understand unless we’ve walked in their shoes.  Everyone’s trials are custom-made just for them and everyone handles trials differently. 

14.    I have learned how to be assertive and how to be an advocate for my child.  I never thought that I would have it in me to challenge a doctor about a plan of care or to insist on certain things that I know Annie needed.

15.    I can do hard things.  I’ve signed a “Do Not Resuscitate” order for my daughter, enrolled her in hospice, watched her suffer through countless procedures and surgeries, learned daily medical treatments and therapies, and I face the inevitable premature death of my child.  I’m not able to do these things because I am strong, but because I receive strength from the Lord and from supportive family and friends.

16.    I knew this before Annie was born, but I’ve learned even more in the last 10 years that I married a truly kind and selfless husband.  I am continually grateful for Justin’s help in getting up in the night to help Annie, taking time off work to go to doctor appointments with me, encouraging me to develop my own talents and go out and get breaks, and providing a shoulder to cry on when I just can’t bear another wave of grief.

17.    Annie has helped me know how to teach my children about unconditional love and about how to treat and interact with those that are different from them.

18.    I’m not superwoman.  I need help and I’m continuing to learn how to ask for it.

19.    It’s important to celebrate the small things.  We celebrated when Annie finally learned to hold her head up, when she learned to reach for toys, or whenever she is discharged from the hospital, etc. 

20.    Often, the simplest things from others mean the most.  Like having someone sincerely ask how Annie or I am doing and stop to listen to the “real” answer.

21.    We truly love the people we serve, even if they will never reciprocate the service, or communicate gratitude or thanks, give a hug, or say “I love you”.

22.    I learned very early on to not compare my children to others.  Watching missed milestones pass us by only brings grief and heartache.  Every child has their own unique set of strengths.

23.    The power of the priesthood and sincere prayer is real and can comfort us, inspire us, and work miracles.

24.    Life is too short and our loved ones won’t always be on this earth with us.  It doesn’t matter if the dirty dishes are left out, the laundry piles up, or the bathrooms haven’t been cleaned.  We never know which day might be our last to hold our loved ones.

25.    True joy comes in small packages, like in that of Annie’s smile.  Her laugh can light up a room and helps us remember that life is good!  Because it really is.

Time is Going So Fast!

I'm realizing I've been rather neglectful at posting updates lately.  Life is just passing us by so quickly.  I wish I could slow down time.  So here's a quick update since it's been so long...

Annie had more surgery in February.  Although she had her sublingual salivary glands removed last fall, her ranula amazingly still managed to grow back.  In February she had the ranula drained and the surgeon did end up finding some residual gland tissue that he had missed last fall.  Hopefully now it is all out and her ranula will not return.  She seems to be doing well now (except for continued drooling despite only having 2 of her 6 glands intact) but we continue to monitor for another ranula.

Annie also had her semi-annual renal sonogram in January.  It is incredibly uncomfortable for her since she can't manage to lay on her side or tummy well due to her scoliosis.  But after a full hour scan, and many tears, we learned the mass in her kidney hasn't changed in the last 6 months, so we'll just continue to monitor it.

Recently, Lexie finally met all the goals in her IEP for her speech delay.  Her therapist now believes that Lexie is age-appropriate enough to be able to be discharged from special education!  She will continue through more extensive evaluations for 3 more weeks before a final decision is made, but her teachers expect her to pass her evaluations well and be discharged from special education in May!  Lexie has been in some sort of special therapy services since she was about 8 months old, so we are excited to have only one child in special education again soon and eliminate half of our IEP school meetings!

Molly has been reading everything in sight lately.  She has finished all the Junie B. Jones books, Magic Tree House books, and several other series and is now reading the Geronimo Stilton series and My Weird School series--finishing 2-3 books a day!  I love that she gets so excited about books! 


Justin hasn't been teaching any courses this semester, but he has managed to stay busy with writing grants, doing research, and getting manuscripts published--on such tight deadlines that some nights have only given him 2 hours of sleep.  He is a superhero.  He has several wood-working projects waiting for him in the garage that hopefully he'll have time to get to them soon.  He's hoping to build a new captain's bed for Annie by her 10th birthday next month!

As for me, I'm having fun with my photography business and things are going very well.  I was just assigned to be the organist for our church services each Sunday, so I've been spending a lot of time practicing the organ which has been fun.  I'm also getting VERY excited for our Aicardi Syndrome Family Conference coming up this summer.  We're getting down to crunch time on getting the last speakers and details all together. 

So there's the quick run-down on our family.  Things are going really well.  We are so blessed.  We survived winter and spring is finally here! Life is great!

The Happiest Place on Earth!

Justin had a pharmacy conference in San Diego in February and insisted I go with him.  My kind parents came out to stay with the kids and off we went.  It was the very first time Justin and I have gone on a trip alone together just for the purpose of going on a fun trip!  And the timing over Valentine's Day and my birthday couldn't have been better! We spent one day in San Diego, seeing Coronado Island and the beaches, visiting Balboa Park, and stopping at the San Diego temple before heading up to Disneyland!

 There was nothing better than being in Disneyland in the middle of February, with no lines, and no kids!  We had a blast and the weather was great, except for a little rain the first day. Neither of us had been to the Disney California Adventure park before, so it was fun to explore that.  We LOVED the Toy Story video game ride, the California Screamin' roller coaster, and Tower of Terror which we must have ridden a couple dozen times! 

 

 

Our trip got us even more excited and eager to get Annie's Make-a-Wish trip planned to DisneyWorld soon.  We saw so many things that made us think of her and realize how much fun she would have on a special trip like that.  But this time, it was definitely fun to leave the kids at home!  They were happy to have us home, but they all had a great time with Grandma and Grandpa.

 

We Met Mitt Romney!

My brother told us about Mitt Romney's rally on Sunday, January 1st, so we decided to take a drive to Council Bluffs to see him.  We expected to be at the back of a huge crowd, but had quite the opposite experience.  The rally was at an old colonial home used for receptions and such.  We arrived about 5 minutes late only to see a huge line of people winding its way down the sidewalk in front of the building waiting to get in.  Fortunately, since there were several stairs up to the front porch, we were able to go around back to use a wheelchair-accessible entry.

We entered the main floor "lobby" that was packed full of people waiting to get upstairs where Romney was to speak.  We realized we couldn't get Annie upstairs, but they said the audio would be carried into the room we were in.  Then Justin suggested that I could still take Molly and Lexie and go upstairs while he waited downstairs with Annie.  So I got in line.  There were several people with walkie-talkies and they were closely counting everyone who they were allowing upstairs.  I could tell they were running out of room up there from the things they were saying into their walkie-talkies, but when I told them I had 3 of us, they ushered us through and we headed upstairs.

Once we got into the small reception hall, I wondered why they let us upstairs since there appeared to be standing room only.  I quickly started looking for a corner or wall to squeeze up against, but there really was nowhere to go.  I then saw some ushers leading people to seats, so I decided to just wait for one of them to direct me.  An usher asked me how many were in my group and when I said 3, he asked if Lexie and Molly could share a seat.  I said Lexie could sit on my lap, so he then led us to the very front row in the very center!  I was stunned!!  The small 6" tall platform for Mitt Romney to stand on was literally 2 feet away from me!

The back of the room was full of news cameras, and photographers roamed the room snapping candid shots.  Several photographers took pictures of Molly and Lexie sitting and waiting, and one even asked me Molly's name, how to spell it, and how old she is, as he wrote it all down in his notebook!  I'm upset that I didn't think at the time to ask him who he was with.

Once I realized how many pictures we'd be in and that Romney would be standing right in front of us speaking, I sternly lectured Molly and Lexie about how it was absolutely vital that they be on their best behavior.  We waited there for 20-30 minutes, just watching the swarming photographers before we got word that Romney had arrived at the building.  (I began wishing that I had brought my own professional camera instead of my little point-and-shoot, but it never crossed my mind that I would be meeting Mitt Romney!)

Romney first spoke briefly to the downstairs crowd before making his way upstairs.

Mitt Romney and his wife greeting the crowd on the main level.  Justin is a blurry head at the back of the room--the upper left side of the picture. (Photo from the press.)

Security ushered Romney upstairs and to the front of the room as he stopped to shake hands with people and sign posters.  He made  his way up to the platform in front of us, was introduced and started his speech.  He started by introducing his wife and son who were with him, his wife spoke for a few minutes, and then Romney continued to talk for about 20 minutes.

Here are some pictures I took on my own camera from our seats on the front row:

Here are some pictures we're in from the press during Romney's speech: 

The girls really did behave wonderfully!  Molly's yawn here was about as bad as it got....

...Except at one point Lexie wanted to hold the poster, and Molly didn't want her to.  I whisper-shouted to Molly, "You give her the poster right now! And be quiet and sit still!"  I'm glad no one captured THAT moment for the newspapers!

The people working there told us there was a turnout of about 300 people.

 Immediately after Romney was done speaking, he stepped off the platform to greet the man sitting next to Molly.  We stood and waited, then Romney turned to us and shook our hands.  As he went to shake Molly's hand, I stood back trying to get a picture of it, when Romney offered to have a picture with the girls.  He squatted down to their level and scooped them in his arms so I could get a picture.  The photographers saw him greeting these girls and they had probably dozens of pictures taken of them right then.

Romney pulling the girls in close for a picture. That's me on the right holding my camera. (Photo from the press.)

My resulting photograph.  If I had known we'd be meeting Mitt Romney and appearing in the newspapers, I would have taken more time to fix up the girls hair!

Mitt Romney talking to Lexie after I took their picture. (Photo from the press.)

Shortly after that we decided to make our way downstairs to share our exciting news with Justin and Annie.  I was giddy as I told him about where we sat and the photographers and meeting Romney.  We started heading toward the back of the building where we entered, but heard that Romney would be coming downstairs soon to greet people before entering a private room at the back of the building for a recorded interview.  We stood at the entrance to that room (which was also right by the back door we came in) and decided to wait for him to come by so Justin and Annie could meet him.

Romney greeted several people and signed lots of posters as he made his way towards us.  Just before entering the interview room, he turned to us and shook our hands again.  He recognized Molly and said, "I just met you upstairs."  So we told him she wanted her poster signed.  He signed it and then greeted Annie, patting her on the shoulder, and telling her, "Tell your parents thanks for bringing you out tonight."  Annie was focused right on him.  He talked to us briefly and shook Justin's hand and disappeared into the interview room.

Annie and Molly with Mitt Romney as he signed their poster.

Romney greeting Annie, telling her to thank her parents for bringing her out to the rally.

We left the building and drove home all giddy!  I couldn't wait to get home and call my brother who told us to go!  I'm so glad we decided to go.  I still can't believe how easily we were able to meet him.  It's been so fun checking news websites and seeing our pictures on front page news stories around the country and even in Canada!  It's funny still to google "Mitt Romney Council Bluffs" and have so many pictures of us and the girls come right up at the top of the search!  Lexie continues to get excited when she sees Mitt Romney on the news on TV.  This was quite the experience, especially for the girls.  Now let's just hope he wins the election!

Our Pantry Project

We've been in our new house almost 3 years now!  And I've hated our pantry for almost 3 years now!  So over the Christmas break, we decided to finally redesign our pantry.

BEFORE:  The shelves are 24" deep, so we essentially have a "front row" and "back row" of food on each shelf, making it very difficult to reach things and keep things organized.  The blueprints for our house show L-shaped shelves which was what we thought we were getting, so we decided to make them that way now.

Jodi adding supports for an extra shelf up high.

Justin extending the supports along the side wall.

Justin using his router on top of his new table saw.  Yes, he also has one eye patched from scratching it badly with flying saw dust.  We cut our existing 24" deep shelves to 14" deep, then cut new wood for the side shelves.

Jodi painting the new shelves, feeling grateful that the weather was warm enough to be working in the garage! (Although I did have my space heater running.)

AFTER:  We now have even more shelf square footage space since we added a new 6th shelf, plus we can more easily see and reach everything in the pantry.

Yay for a handy husband!  I love our new pantry!

Merry Christmas from the Tolmans!

Merry Christmas, friends and family!  It’s been a busy year, but definitely calmer than last year at this time.  With Annie’s 6 week hospitalization and major health issues just over a year ago, we didn’t get the chance to write a Christmas letter.  This Christmas season we are so grateful and feel so blessed to have our family all together and have a period of relative health.

Lexie just turned 4 and started a special preschool this year for children with speech problems.  She continues to receive her private speech therapy once a week, but now she also gets to be in a preschool setting to work on group language skills.  She has made tremendous progress this year and her therapists now consider Lexie to be age-appropriate in her language and speech!  For several months, Lexie has shown extreme light sensitivity, to the point where even the bathroom light was too bright for her.  We took her to the ophthalmologist and have learned that Lexie most likely has a degenerative corneal disease.  After lengthy treatments of antibiotics and steroid ointments, she is currently only on eye drops.  We’ll return to the doctor soon to learn what kind of chronic treatment will be needed to maintain her vision.

Molly is in the 1^st grade and loves school.  She loves reading and has recently started gaining interest in chapter books.  She’s read the entire Junie B. Jones series and continues to read about 4 chapter books a week!  This year was exciting for her because she lost her very first tooth!  Sadly, however, the tooth fairy was so busy at that time, that she came a day late!  Thankfully, Molly was very understanding.  Molly has the typical “oldest child” personality, and is a great helper around the house, especially with Annie and Lexie.  She’s very responsible and probably does more for herself and her sisters than a typical 6 year old should!

Annie is currently in the 4^th grade and loves school.  This year she has started using a Dynavox Eye Gaze communication computer that detects where she looks on the screen.  This allows her to make her own choices, have a voice of her own, and participate more in her classroom with her peers.  We are so grateful that she is surrounded by friends and teachers in her classroom who adore her and make sure she is included!

After Annie’s hospitalization last year with complications from a c-diff infection, she was diagnosed with ulcerative colitis.  Because of that, she now requires a new special formula and medications that she’ll probably take the rest of her life.  This past year Annie did have two flare-ups requiring pretty strong steroids, but she is currently in remission now.  If she has another flare-up within the next 4 months, the doctor expects her to require a chemotherapy drug to maintain her colon health.  This past year Annie has also had 3 surgeries on her salivary glands.  The first two procedures took place in Ohio in March and June, where a doctor injected an alcohol solution to kill 4 of her 6 glands.  This past November, due to complications, we were left with no choice but to have her glands removed.  Annie was very blessed with a fast recovery and is now doing much better.  She is an absolute joy and we love her so much!  (To learn more about Annie's diagnosis and medical challenges, please visit Annie's Story page or FAQ page.)

Jodi continues to enjoy staying at home with the kids, but this year she also officially launched her own photography business.  She’s had a lot of fun doing sessions for clients and loves having a creative outlet.  Jodi also has been busy serving a two-year term on the Aicardi Syndrome Foundation planning committee for the next family conference in the summer of 2012. She's been helping to get professional speakers and organize agenda details for the fabulous weekend when over 100 Aicardi families will reunite.  It’s been a blessing to have closer associations with her Aicardi friends while serving on this committee, and to be of service to such a wonderful organization.  Jodi loves reading in her spare time and enjoys organizing and managing a monthly book group.  Jodi also continues to serve in their church as the secretary for the children’s organization and as the church choir pianist, and has enjoyed writing some original music compositions for this year's Christmas program.

Justin has had a busy year at Creighton University.  He continues to teach Pharmacokinetics where he often makes his students cry.  He’s an excellent professor that the students really do love, but he does teach one of the most difficult classes in the pharmacy program.  He’s had several other smaller teaching assignments throughout the year, and continues to serve on several committees, all while working on research too.  His first graduate student graduated this year, and he continues to work with 3 others.  We are excited for his tenure review coming up in just a couple more years.  At home, Justin loves relaxing with a book or video game and has recently taken a stronger interest in woodworking.  He also continues to serve as the president of the 12-17 year old boys group in our church.

Many thanks to all our extended family, our Aicardi Syndrome family, and other friends who continue to be such a strong support to our family.  We have very much appreciated all your thoughts and prayers, especially on behalf of Annie.  We feel peace, comfort, and joy from our knowledge of the gospel of Jesus Christ and look forward to this season to remember Him and His birth. We love you and wish each of you a very merry Christmas!

Halloween, Surgery, Thanksgiving, a Birthday, and Getting Ready for Christmas...

Again, I'm so behind on updates!  It's been a busy couple of months.  Here's a little of what's been going on...

Halloween was pretty fun this year.  We went to Skinny Bones with the kids and we had fun.

10 acre Corn Maze at Skinny Bones, complete with scavenger hunt!

This was the first year for us to trick-or-treat in our new neighborhood.  It was surprisingly warm for a Nebraska Halloween!

I went with a group of friend on a weekend trip to Kansas City to go to a women's conference.  It was a much-needed break!

Annie had her sublingual salivary glands removed and her submandibular glands tied off in November.  This picture is from the PICU, shortly after coming out of recovery.  Notice there are no breathing aids! 

Annie sailed through surgery and recovery, surprising everyone!  She was discharged just 2 nights later, about 5 nights earlier than expected!

The swelling was very similar to her previous two salivary gland surgeries she had done earlier this year in Ohio.

On Thanksgiving, the weather was still surprisingly nice, so we took the girls on a walk and to the park.

Our Thanksgiving dinner.  Indian hats courtesy of Molly.

Molly learned to knit several months ago, but just finished her very first hat for her baby.

Annie chillin' with Dad, watching TV.  She seems so much bigger when she's sitting on the couch with us!

It snowed!  And the girls loved playing outside and sledding!...

... and Justin loved trying out our new snowblower!  Two winters without one were enough!

A couple weeks ago, Lexie turned 4!  She got a new baby doll that she named Suzie and absolutely adores!

We finally got our Christmas tree up after Lexie's birthday.

By way of update on Annie... her salivary gland removal surgery in November has proved successful so far.  Her drooling has decreased dramatically, and the ranula hasn't appeared to come back!  We also recently saw Annie's orthopedist to get her routine spine x-rays.  We're always nervous about her scoliosis curve increasing, but fortunately, there had been no change this time from the last 6 months!  Her curve is holding steady around 50-60 degrees, so we won't be considering surgery for at least another 6 months.  Once her curve gets to 75-85 degrees, it will start to affect her heart and lungs, and we'll have to decide about major surgery to place metal rods down the length of her spine.  So for now, we're just praying her curve doesn't worsen!  So far so good!