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Wednesday, November 25, 2009 10:49 PM CST
Hello & Happy Thanksgiving!
We are thankful for many things this year. We are thankful for: the arrival of Evelyn Grace on June 9th. She weighed 6 pounds 10 ounces and was 19 ˝ inches long. Evie is our little “smiley girl”: she is always ready with a big smile. Her two sisters adore her and pamper her silly. Sophia loves to snuggle with her, burp her on her tummy and go nose to nose. Lila loves to “pet” her and tell her “its ok”. Evie is a sweet tempered baby and we are thrilled. She has beautiful blue eyes and family & friends say she looks a lot like her daddy. Evie is a little miracle and a blessing from God.
We are thankful for: health. Sophia has not had a serious illness since last January – almost one year (!!!) The rest of our family has been healthy and has managed to avoid even the latest strain of flu going around. I am thankful for a successful thyroid removal surgery with clear pathology results this past July.
We are thankful for: sisters. Sophia & Lila have such a wonderful relationship. They dance & play together, protect each other and even argue. Sophia loves her music videos and MP3 player, listening to Michael Jackson and Taylor Swift. She is working hard at school this year via webcam/homeschool and has become an expert on her laptop. Lila has gone from toddler to 4 ˝ going on 16 this past year. She loves jewelry, dressing up, wearing heels and doing her nails. She enjoys her ballet & gymnastics classes and is as spirited as ever. She started Pre-K at Berry Patch and comes home each day with something new she learned. She also likes playtime with her good friend Morgan.
We are thankful for: Nana. Nana Judie continues to help us out so much and we are so grateful for her presence in our lives.
We are thankful for: Godmothers. Lila’s Godmother, Cassie, got married last month to her longtime beau Joel. The girls were honored to be flowergirls in the wedding. There were many fun months of preparation with dresses, shoes, veils and hair ornaments. Sophia in particular became obsessed with weddings, choosing a different groom for herself each week. Cassie & Joel’s wedding was beautiful and a lot of fun. We were able to meet some of her extended family, including her cousin Nico from California. Sophia was smitten from the first meeting, and both of the girls fought over him on the dance floor. The Bride honored Sophia’s song request – Taylor Swift’s Love Story – and even played the part of the prince. Thank you & congratulations Cassie & Joel!
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We are thankful for: nurses. We are so fortunate to have an awesome team of homecare nurses. Carol & Laura, Sophia’s longtime nurses, are instrumental to our lives in so many way: respiratory care, clinic appointments, attending school / managing her webcam school days and catering to Sophia’s addiction to music videos on You Tube.The team has recently been joined by Carla, a new nurse graduate who is doing an awesome job with Sophia. One of Sophia’s former nurses, Audrey, who moved to Utah last year, spent a month with us this summer. The girls loved spending time with her; they have always thought of her as their “big sister”.
We are thankful for: Winston, our new Cavalier King Charles Spaniel puppy! He is five month old with big brown eyes and a ruby coat. Winston is an early Christmas present for the girls; we surprised them one.morning with their very own puppy. Winston has won all of our hearts; he is a sweet-tempered dog who loves to cuddle. Lila has been spending a lot of time with him; they play for hours together.
We thank the Lord for all of our blessings this year. Happy Thanksgiving.
Friday, June 5, 2009 9:39 PM CDT
Sophia graduated from kindergarten today! We are so proud of her. She had a great finish to the year. We will miss her class – such a great group of kids – but some of them will continue on to first grade together. We said good-bye to Owen, the kindergarten class bunny-in-residence, and her teacher and para. Sophia has had a wonderful kindergarten experience, despite some hospital stays and absences from sickness. The school set up a webcam system that she used from January to April, and it definitely help get us through the year without numerous colds.
AND we are waiting, waiting, waiting for the arrival of Sophia & Lila’s sister! She is officially due this weekend, and we have a scheduled induction for next Tuesday. The girls are very excited and have been picking out names (“Sweetie Pie Shrek” and “Sarafina” are the latest) & selecting baby gifts. I am looking forward to baby’s arrival more than ever. This has been a long, difficult 40 weeks with many challenges. The girls have been so patient with their mommy not being able to do much.
Sophia and Lila have some fun plans for the summer: going to the pool, having playdates and just hanging out with their new baby sister. We will send an update after the little one arrives.
God bless,
Andrea
Monday, March 23, 2009 5:52 PM CDT
Thank you everyone for the prayers for Sophia during her surgery today. She had a long day in the OR but the surgery went very well & the orthopedic feels confident about the degree of correction as well as replacement of hardware at the "stress point". Sophia was already extubated to bipap when we saw her in recovery. She has discomfort and is on pain meds, but has been awake enough to tell us how she feels. The first thing she asked for was Lila. She misses her & wants her to come. Lila misses her big sis and did not want her to leave yesterday. Continued prayers please for a smooth recovery!
Friday, March 20, 2009 4:06 PM CDT
Sophia is scheduled for surgery this coming Monday to correct the stress point in her back caused by increased curvature in her lower spine. This will be a fairly major surgery, similiar to the initial rod surgery. Please keep her in your thoughts & prayers.
Friday, March 13, 2009 10:49 PM CDT
Yesterday was a real bummer of a day for us. Sophia has some urgent orthopedic issues concerning her growth rods. We have been in contact with her doctor in WI about this over this last few weeks, and yesterday she visited her local orthopedic physician for an exam. X-rays confirmed what I had suspected: the curvature in her lower spine area (the part not supported by her growth rods) has doubled in a very short time. This is causing stress on her rods, to the point where some of the hardware is visible and could break through the skin at any moment. This is alarming and could cause many complications. Her orthopedic surgeon in WI is out of town until next week, so we are just waiting until he tells us what to do. One option is that Sophia will need to have spinal surgery very soon to alleviate the stress point. This surgery would be a much bigger deal than rod lenthening surgery, so we will definately need prayers.
We also tried to get blood while at the clinic yesterday to do labs on Sophia, and after several hours of waiting and two different attempts, gave up & went home. I hate putting Sophia in this situation and find I have less and less tolerance with incompetent people & decisions. The orthopedic's nurse assured me that they were sending "the best from the PICU". I assumed it would be a PICU nurse or neonatal nurse who frequently draws blood from infants/kids. No, they sent a pediatrician (!!) from the PICU who did not succeed; most people know that doctors are not the best (ususally) to do the blood draw; it is a nurse or a tech - someone who does it all of the time. I was so busy absorbing the orthopedic news that I didn't think to question who they were sending. It is exhausting to constantly be on top of people, questioning decisions and making sure it is the best choice.
Sophia was relieved to leave the clinic. On the way home, her nurse Carol asked her "Sophia, are you yawning"? And she answered "no, I'm just happy". She had such an unpleasant day, and yet her spirits remain high and she doesn't hold a grudge. She is my little hero.
Thursday, February 19, 2009 9:10 PM CST
Hi Everyone!
I am happy to report that Sophia is doing very well. She is feeling cooped up this winter (aren't we all) since she has been home from her January hospital stay. The webcam setup is working very well...we are still shifting into "homeschool" mode & learnign how to keep her interested.
This has been a long, long winter for us. The bathroom remodel project has about done me in. Remodeling our only main floor bath during a cold winter would never have been my choice. Three weeks has turned into eight, and I feel like I will lose it if one more worker needs to come in & make noise. Not having a bathroom in the middle of winter with two young kids, being six months pregnant, no place to bath Sophia or wash her equipment, and having to make the trek to a cold, cold basement for a bathroom visit is enough to make anyone insane. Having a stressful hospital stay for Sophia at the beginning and coming home to a noisy, messy house with workers in & out all day has been the end-all. To top it off, I have fought with terrible insomnia this pregnancy, and not being able to have some quiet in the afternoon has been extremely difficult. I am very happy with the new bathroom, but I never do it again under these circumstances.
It also just gets so tiring having people in your house all day, asking things of me, being in my space, invading your privacy. It is exhausting. I am so physically tired these days, it takes all of my energy to make small talk & be polite. I just want to hide.
Sophia and Lila have been such sweethearts throughout it all. Sophia will get very concerned: "are you sad Mommy?" Sometimes I will just hold her & rock her. Lila gives me lots of bear hugs which brightens my days.
Spring cannot come soon enough. I pray to God for strength & patience.
Andrea
Sunday, January 25, 2009 9:57 AM CST
Sophia is home!
We left Madison Saturday afternoon, after 11 days in the hospital. Sophia is doing very well, spending several hours at a time off the bipap. She needs rest, long hot baths, good stretching and lots of food. She was very happy to be in her own bed last night.
This has been a particularly long & draining hospital stay for our family, emotionally & physically. For me, it was tough to be in the hospital, pregnant, tired, sick & unable to sleep. There's no question that Sophia was where she needed to be: she had the best care from the nurses, RTs and doctors. But it takes a toll. I didn't see Lila for a week, then she came to Madison for the last 5 days (Nana Judie left after a few days) and drove back with us. Sophia loved having her sister around, but it was tiring, too, when I was the only one in charge of Sophia, having to watch her like a hawk as she recovered. Even in the best hospitals, I don't think people realize that your child does not have one-on-one nursing 24/7. They are in & out of the room. But with an SMA child, you don't leave them alone at home, so you certainly would not leave them alone in a hospital, as they are recovering from an illness. There would be times when Sophia was doing great, on or off bipap, then suddenly she would drop her oxygen saturation rates to the 70's or lower, and require immediate repositioning, suction, cough, etc. So you always have to be on your toes. It is very draining when you are on your own. Then to top it off, I became sick after Doug went home to work. I just could not keep my energy up. Many times I wish there were several of both Doug & me, so we could all take shifts & get some rest.
I don't mean to sound all doom & gloom. We are extremely excited & happy that Sophia is home & doing great. But it does take alot out of you. It has been so cold, too, 17 below zero as Doug was unpacking the van last night. A huge thank you to Nana Judie for all your help, especially with Lila, and for Papa Bill with our bathroom remodel. We couldn't do it without you guys.
God bless,
Andrea
Saturday, January 17, 2009 12:51 AM CST
Greetings from Madison, WI
Sophia was admitted to the PICU here in Madison late Tuesday night with bacterial pneumonia. She had come down with a cold over the weekend with fever & congestion. On Monday we took her into the pediatrician's office to test for RSV, influenza, etc. She tested negative for everything, but her blood results indicated her body was fighting a virus. She was bipap dependent & her lungs were very noisy. We had been packed for a few days in preparation for a road trip; by Tuesday afternoon we decided to hit the road. Nurse Laura came with us - thank you Laura! We couldn't have done it without you. The roadtrip went ok; Sophia maintained her oxygen saturations well, except for some flucuations the last hour. We spent a few hours in the ER and finally made it up to her PICU room at 4 am. We started Q3 treatments (chest therapy treatments every 3 hours) with the Vest.
She has been fairly stable the last few days but will not come off bipap. She still has some stuff to work out of her lungs, so today we tried the IPV during treatment. We had tried it yesterday, but she had a scary drop so we went back to the Vest. For Sophia, the IPV is extremely effective in loosening mucous & secretions, so effective that it has lead to several plugging incidents that required emergency intubation. So we are nervous to start the IPV right away if she gets sick. At some point, it can be very helpful in recovery, when there are stubborn secretions that the Vest cannot move. This morning's treatment was a perfect example of this. Her Vest treatments had yielded no major mucous, but her chest was still very noisy and you could feel it with your hand. After just a few minutes of IPV, we did coughs and up came a nice sized plug. A few more minutes - an even bigger plug came up. She tolerated the IPV as well as she could with no major dips, so I think we will continue Q3 on IPV today.
Prayers are appreciated. We are all missing little Lila at home.
Andrea
Friday, December 26, 2008 10:14 PM CST
Merry Christmas & Happy New Year!
We celebrated the birth of Jesus with lots of snow & cold. The girls were in very festive moods and loved the decorations and lights. We are very, very thankful for a healthy family this season.
Sophia & Lila have entered a magical stage of sisterhood. They play so well together, and Lila has become very dependant on Sophia. They help each other out: Lila will place toys in Sophia's hand (and always the left hand, because she knows the right hand is for driving) and loves to race Sophia around the house in her bike. They play make believe with Playmobil sets and build forts in the living room. Sophia is also very protective of Lila, and will "run down" any potential threat with her powerchair. You don't want to get in her way!
Sophia continues to enjoy school and even finished out the term attending five days a week. She enjoyed helping out during the "Kids Against Hunger" food drive, where she was a box runner. She is blossoming. She has become so talkative, saying the most profound and witty things. She also loves to sing, and has a great ear for music. She will listen to a song one time and be able to sing it back to you, in tune. Her latest thing is telling everyone that she is "getting married" (like our recently-engaged friend Cassie) and will be going to live in the castle. The groom is none other than Prince Phillip. She has picked out a dress from a bridal magazine and has a gigantic faux diamond ring. She will put everything on, including a pair of glass slippers, and dance around the living room in her powerchair to the theme from Sleeping Beauty.
Busy little Lila has been enjoying the snow - sledding & skating with her Daddy - and is looking forward to her 4th Birthday. She is a smart, observant girl who will not let you forget anything. She is also loads of fun and loves to giggle and smile. Her favorite gifts from Christmas were Tumbles, a stuffed puppy that rolls over when you press his paw, and a big elephant that she can ride. Animials continue to be her passion.
We thank God for all of our wonderful blessings and look forward to the new year. Most importantly, Sophia & Lila will welcome the arrival of their new sibling in early June! We are all very excited about this addition! The girls are convinced it will be a boy. Sophia asks me every day "Mommy, do you have a baby in your tummy...a boy?" We would be happy for either, and will be leaning on God during this exciting (and crazy) time.
God bless,
Andrea & Doug
Saturday, October 25, 2008 9:35 PM CDT
The past two months have been a whirlwind for Sophia & all of us! I posted the last update after her first day of kindergarten; she continues to enjoy school but has had a couple of (planned) interruptions:
FLORIDA & MAKE-A-WISH!
Sophia was granted her wish to go to Disney World by Make-A-Wish. We left on Sept. 27 - her first commercial air trip. And she did great. We had alot of wonderful helping hands along the way. A special thanks to Cassie, Audrey, Carol, Sharron, Paul & Laura (from across the miles:) We couldn't have done it without you guys. We spent an amazing week at Give Kids The World in Orlando. Sophia met Prince Phillip at Magic Kingdom (a long time wish) and Lila rode Dumbo. We were able to go backstage at Seaworld and meet Bubba the dolphin and several of his friends. They clapped, barked and teased and were simply incredible. Then all of the dolphins gave us a private show. A big Thank You to Cassie & the staff at Seaworld for organizing this event. The girls also swam in the ocean for the first time. There is too much to update on this trip!
Madison & Rod Lengthening Surgery
Sophia goes to Madison every six months to lengthen her spinal growing rods. This was her second lengthening procedure and it went like clockwork. Two nights & three days and we were home again. She was such a trooper, keeping her spirits and humor up even through some discomfort. We had a shorter stay this time and she was amazing. Sophia's longtime friend Charlie was in Madison for the same procedure, and it was a welcome distraction for her. She is doing well at home and was happy to see Lila and be back in her own bed. A big thanks to Nurse Laura who came to Madison with us and spent the night with Sophia in the hospital. Sophia was a little anxious the night before her surgery, so Laura created a cozy tent over her bed to block out all of the monitors. She slept like a baby:) As always, a big thanks to the whole team in Madison for knowing our kids so well and making even a trip to the hospital a pleasant experience.
Sophia will be back at school next week. I will post some pictures of her Wish trip soon.
God bless,
Andrea
Thursday, September 4, 2008 9:41 PM CDT
Sophia went to her first day of kindergarten today! She had a great time and was very excited. She rode the bus, waiting in the driveway with Lila. She had a big smile on her face when she left. Nurse Carol rode with her and Doug and I followed behind. Laura and baby Ella came to school to surprise Sophia. The principle and her teacher greeted her. We waited for all of her classmates to arrive, then form a line and go down the hall to their room.
We are very excited about this year. There are lots of fun activities on the schedule for the fall, and it seems like a really neat group of kids. Her teacher is wonderful.
It was a great day and I was so proud of Sophia!
God bless,
Andrea
Thursday, August 28, 2008 8:37 PM CDT
Sophia will start kindergarten next week! This is an amazing milestone and we are so proud of her. Her school had an open house today. She met her teacher and several of her classmates, picked out a locker and made a crown hat. She did great, even when it was packed with kids and parents. She will even ride the bus next week.
She takes it all in stride and handles new situations with such ease. She is my inspiration and strength. She was mischievous and funny today, even a little naughty when I told her it was time for bed and she turned her powerchair around with a twinkle in her eye and drove in the opposite direction.
In the meantime, the girls are enjoying the last few weeks of summer: beautiful weather, no schedule and lots of time outside. We took the girls for our first family bike ride with Sophia's new bike trailer this week. The trailer is also a jogger, and it is wonderful for her to be able to participate in these activities. Her favorite activity this summer has been driving her chair through the sprinkler and getting totally soaked.
Last night the girls snuggled together in Lila's room before bedtime. They are wonderful friends and it is beautiful to watch. They both look out for each other.
God bless,
Andrea
Thursday, July 17, 2008 8:58 PM CDT
Sophia celebrated her 5th birthday yesterday and had a great day. She is feeling good following last week's stay in Madison, and is almost back to her baseline. We went to speech therapy in the morning and she was extra talkative & spunky, even correcting her speech teacher several times. Her friend Mary Kate came into the room to sing Happy Birthday and give Sophia a bouquet of flowers. Sophia had a huge smile on her face. She told Mary Kate that she is "still looking for Prince Philip, and did not find him at the hospital".
Aunt Darla came by just before Sophia's nap and brought some fun gifts: a beautiful pink dress (Sophia wore it for her party that evening), a Dr. Suess pop-up book, a fishing game and some colored bath tablets. Thank you Aunt Darla! Sophia also enjoyed opening her gifts from Grandpa Jerry & Gramma Linda: disney princess books in spanish and a bubble machine. Lila had fun with this one, too.
We had a small gathering in the evening. Sophia started out a little out of sorts, but immediately cheered up when she saw Baby Ella come through the door. Sophia wanted to hold her the whole time, and it was all about the baby. She didn't even want to interrupt for cake or presents! Thank you to Addie, Holden, Jodie, Laura, Sam, Baby Ella, Lila, Nana & Papa for making it a fun & special evening. The kids ended up shedding their clothes and swimming in the ice-cold kiddie pool in back. It was crazy & fun & they were giggling up a storm. Sophia dipped her feet in the pool but decided it was too cold. She had a really fun birthday.
The evening ended by opening her Daddy's gift: a miniature camping lantern. She thought that was absolutely the coolest thing ever.
God bless,
Andrea
Monday, July 14, 2008 7:28 PM CDT
Sophia came home on Saturday after spending the week at UW Madison. She came down with the same virus that Lila had the week before...the one that sent Lila to urgent care. Thankfully, this was a moderate illness compared to RSV this past winter. Sophia did not require intubation but spent most of the week on her bipap. The team in Madison gave her rigorous chest therapy treatments around the clock. By Friday she started to turn the corner, was off the bipap and back up in her powerchair. She took her first drive around the PICU and down to the Respiratory Therapy station and received a big round of applause.
All three of Sophia's homecare nurses came to Madison at some point during the week. I am so thankful for them - at times I didn't think I could make it through one more day on no sleep. We all took turns doing a night shift. Sophia was very excited to see them. It was a nice break for me, especially since Sophia decided early in the week that Mommy should do all coughs with the cough assist. If I let the RT cough her, she would hold her breath until her oxygen saturations would drop to a frightening level, at which time I would panic and grab the cough assist. She would then immediately produce a cough and her numbers would return to normal (little stinker!). We used the Vest until mid-week, then switched to the IPV; this seemed to help loosen some stubborn mucous and allow her to spend some more time off bipap.
Sophia and I missed Lila terribly all week. She seemed to have grown an inch while we were away. She is getting very mature for her age, talking about her sister being in the hospital, and taking care of Izzy and her stuffed animals. Lila is a born caretaker; she is very sensitive of everyone's moods and likes everyone to be "calm" and happy. It has been great (and exhausting) to re-connect with her since coming home.
The highlight of the week for Sophia was seeing her Daddy come through the door on Friday night. She had a huge smile on her face and kept saying "Daaaaaaaddddy"! Doug and nurse Audrey came to Madison with us on Sunday but had to return on Monday morning. Sophia spent Saturday morning cruising around the hospital grounds with her Dad before loading up to drive home.
A big Thank You to Uncle Scott, who provided numerous buddy passes so we could have some help come to Madison last week; to Grandpa Jerry & Gramma Linda, who came down to take care of Lila (and do some great yardwork); and to Nana Judie and Papa Bill, who also took care of Lila as well as coordinated everyone's tickets and travel plans.
Sophia is very happy to be home & back in her own bed with her cat Esperanza. She is anticipating her birthday this week and has requested a specific cake (Angelina Ballerina with white frosting and chocolate cake). We are looking forward to celebrating her fifth birthday this Wednesday!
God bless,
Andrea
Wednesday, June 18, 2008 6:44 PM CDT
Sophia and Lila have been enjoying the warm days of summer at the pool, exploring the back yard and going on walks. Sophia is our nature girl: she loves to explore the woods, collect twigs & flowers and feel the branches brush her face while driving her chair. She can be quite adventurous and drives off road and up steep inclines. It is a wonderful thing to see.
Sophia emerged completely unscathed from the food-swallowing incident that resulted in one night in the PICU. She continues her love affair with tasting different foods. Her mommy, however, has not yet recovered from the incident and tries to give her only "safe" foods to taste, things that are too large to move down her throat or get stuck. Her latest favorite activity has been making peanut butter sandwiches for a picnic lunch with her sister. She loves to spread the peanut butter, wrap up the sandwich, and put it into the paper bag with some other goodies. And she loves to watch Lila's face as she discovers the picnic contents.
Doug spent last weekend putting up a fence in our back yard. Lila has a habit of disappearing, so we are looking forward to having her safe & contained. The girls love to go on the "enchanted trail" in the back woods, collecting rocks, worms and hiding from each other.
God bless,
Andrea
Thursday, May 29, 2008 8:21 PM CDT
We had a scary incident yesterday and thank God for watching over Sophia.
We were at Gillette in St. Paul for an orthotics appointment and ended up in the ICU at Children's following a bronchoscopy surgurical procedure to remove a piece of food that became lodged in Sophia's airway. Although Sophia receives all of her nutrition & calories via a g-tube,she does love to taste food. This carries obvious risk, and yesterday was a frightening experience & lesson. God was keeping a close eye on her yesterday, and we had an awesome team of people helping us. Most importantly, Sophia's nurse Carol was essential. She handles a crisis situation with a cool, clear head, and has great instincts that ensure Sophia's safety. She is always thinking ahead and has a game plan. I am so thankful she was by my side when this all happened.
Sophia was a trooper through the whole ordeal. She kept telling me she wanted to go home, and wanted to know where Daddy was. Her Daddy arrived just as she was being rolled into the OR, so he was able to be at her side prior to surgery.
Sophia was discharged this morning and has spent most of the day resting. Her throat and voice are sore, and she lost two more teeth during the procedure, but her spirits are good and I think she will bounce back quickly. Up until yesterday's event, she had been doing so awesome: spending hours in her chair at a time, going to school, going on a field trip, asking to "go bye bye" all of the time, and just being energetic and adventurous.
Thanks for checking in. We are looking forward to an uneventful summer.
God bless,
Andrea
Tuesday, April 22, 2008 8:48 PM CDT
Hi Everyone:
Sophia had surgery to lengthen her growth rods one week ago. She did very well and we came home from Madison on Thursday. As I write this, she is driving around in the dark outside with her daddy, saying "heeeerrrrrrre kitty", looking for her cat Esperanza. She has really bounced back well, and we are all relieved that the lengthening procedures are far less intense than the initial rod placement surgery of last September. She is back in her stander and driving her chair outside now that the weather is nice. It is so nice to see her playful and adventurous. She talks about "going camping" this summer: exploring the woods, roasting marshmallows & sleeping in a tent.
Lila is happy to have us home again. She has also been enjoying the great outdoors & sunny weather. It has been a long winter for everyone. We look forward to an active summer of swimming, playing in parks and just being outside.
Thank you for the prayers during her surgery last week.
God bless,
Andrea
Tuesday, April 15, 2008 8:19 PM CDT
Hello from Madison:
Sophia went into surgery this morning at 8:00 am. She was a little nervous (and so was her mom) but took it all in stride. I went into the OR with her until they gave her medication to sleep. Barely two hours later, they came out to get us: she was already in recovery. Quite a difference from the 5+ hour surgery last September. The lengthening procedure is much less intense. She has two small incisions and can go immediately back to her usual routine.
She was a little uncomfortable in the recovery room, telling me that her "back hurt". After some medication she went to sleep and we took her back up to her room. She slept most of the day, wanting to be turned frequently. She watched some movies and had some time off bipap. She was not up to going to "Pet Pals" down the hall, so I went and took some pictures of the dogs to show Lila. Pet Pals was Lila's favorite activity while at the hospital here.
Sophia has enjoyed having her nurse Audrey here in Madison. What could be better than your own private nurse, especially one that knows Sophia as well as Audrey does? She has been a huge help to both of us and I am very thankful that she could come.
At this point, we should be ok to go home tomorrow, depending on how the night goes. Thank you everyone for your prayers. Sophia is doing great.
Andrea
Monday, April 14, 2008 9:51 AM CDT
Hello everyone:
Last weekend, we had a bit of a scare. Daddy and Sophia were swimming and Sophia took in some water. It created a bit of a panic, but after getting through some logistical challenges like accessing the cough assist, dealing with ambulances with no power, and anxious lifeguards, we got her back to her usual perky self. By Sunday she was doing great.
Currently, Sophia, Andrea, and Nurse Audrey are in Madison, where Sophia will undergo surgery to extend her spinal growth rods. We are confident it will be relatively routine, as one of her buddies, Charlie, went through this recently. We hope to have her home by mid to latter week. Please pray for a speedy recovery.
Please make sure to check out the Minnesota Chapter of FSMA (Families of Spinal Muscular Atrophy) for our upcoming fundraiser events.
http://www.fsma.org/artman/publish/cat_index_32.shtml
The Doebberts
Sunday, March 2, 2008 9:07 PM CST
Yippee! March is here and spring is on its way! This has been a loooonnng winter and we are looking forward to getting outside again. Sophia is doing very well. She is driving her chair like a pro and getting out of the house more.
She is on several antibiotic medicines right now that will attempt to eradicate a bacteria (pseudomonas) that has colonized, or taken up residence, in her lungs. She has had this for the past year or so. By itself, the pseudomonas is probably not making her sick. But when she gets a cold, it can make things worse. So we are hopeful that this month-long course of medicine will greatly reduce the presence of this bacteria. One of the antibiotics is inhaled through the nebullizer twice a day, taking about 40 minutes each time. We have set up a second "neb station" in our sunroom so Sophia can get out of her room and do some fun stuff while on the nebullizer. She can play with Lila, watch a movie or read books, so it isn't too bad.
Last weekend we took the girls over to our local church gym, just to let them get out of the house & play. A couple of other kids joined us after a while, and Lila suddenly became very shy. This is a new stage for her and it is interesting to watch. Instead of running to me or Doug, Lila ran straight for her big sister, grabbed her hand, and stayed attached to her the whole time the other kids were around. Sophia was in her powerchair and took it all in stride, even doing some circles so Lila would have to run to catch up. It was very endearing to see Lila clinging to her big sis. Sophia was very mature and lead the way. There they were in the huge gym, side by side, sister to sister, powerchair & walking. They are quite a team.
Lila went skiing for the first time yesterday with her Daddy. She had a great time and is a natural, wanting to "go fast". It made me sad that I couldn't take Sophia. I would love to be able to do more things with her outside. We actually had a date set in late January to try out a body ski for her with the Courage Center, but had to cancel because of the RSV. It can be really hard living in such a bitterly cold climate. We end up spending most of our lives inside. Sophia can be very bold in her powerchair, even in rain, over snow or in the dark. I just always have to make sure she is safe from a respiratory standpoint, and that she does not get too cold.
Thank you for all of the prayers.
Andrea
Monday, February 18, 2008 9:19 PM CST
Sophia has been home for almost a week and is doing really well. She has been sleeping alot. She had a little bit of a tummy bug the last few days and was not tolerating her normal feeds, but she did well with a diluted mix today. She lost two pounds during her hopsital stay, so it is important to be able to work back up to her normal calorie intake.
She was up in her stander for almost an hour this morning and did so great. Her knees and ankles are very tight, and I was afraid it would take much longer to return to a standing position.
We had a very low key weekend just hanging out inside the house since it was so cold outside. It was nice for both girls to just be at home again. Lila is really enjoying playing around the house: putting her baby to bed, washing her dolphins, and playing with the dollhouse. Sophia has been re-discovering all of her toys and today she spent a lot of time putting her bears to bed and playing with her kitchen. She is loving having her library back - Sophia is a bookwarm and likes nothing better than to snuggle in bed with a pile of books.
Last Friday night Sophia and her daddy went to a Sweetheart Dance, put on by the Edina Parks & Rec. Sophia got all dressed up in a gold & black dress with a faux fur shawl. Doug called her his "russian princess". They met our friends Brian and Katie there and had a great time dancing and socializing.
Thank you for checking in. And thank you for the continued prayers.
God bless,
Andrea
Wednesday, February 13, 2008 6:02 PM CST
Sophia is home after 20 days in the hospital with RSV (6 at our local hospital and 14 in Madison). She recovered beautifully and is happy to be back in her own bed. Lila is thrilled to have us home again. It has not been easy for her, either.
I am thankful to God every day for watching over Sophia during that terrible crash at our local hospital. And that he allowed us to get to Madison, in a blizzard no less. Sophia is my little warrior. She had such fun driving her powerchair this weekend in the PICU for the first time in three weeks. She danced to Angelina Ballerina and everyone clapped for her. She had such fun visiting Addison down the hall and looking at all of her switch-adapted toys. Sophia is sleeping alot right now and is getting her voice back.
Andrea
Sunday, February 10, 2008 2:28 PM CST
Sophia was successfully extubated to bipap on Friday morning. She did great. The team here did such a wonderful job with her. The only issue that day was a cracked bipap mask, the only one I had brought with me from home. We tried a different mask but the hospital bipap kept sensing a leak. So Sophia had to wear a full face mask (covering both nose and mouth) for most of the day, until her daddy arrived with another gel mask. She was very happy to put her old mask back on.
Today she went six hours without bipap. She was very content playing with her "arms up" and having Lila around. She is now back on our bipap as they start to transition her to her home program. I think we will be going home soon. Sophia has recovered beautifully. Once again, I thank God for the hospital & team here in Madison. She is in the best hands.
Yesterday I took Lila back to "Pet Pals", a program every Saturday where several volunteer dogs are brought into the hospital. Lila met Elvis, a little miniature mix with a tongue that hangs sideways; Abby, a black lab; and Bailey, a collie that looks like Lassie. Lila had a blast.
Yesterday evening Lila and I went to a benefit for 9-month old baby Aubrey, who has SMA type 1. She is a beautiful red-headed girl. We are hoping to see them again before we leave.
She is in great spirits, especially after spending the weekend with Lila and Daddy. Daddy would be right next to her during a 3 am treatment, holding her hand and letting her know that everything is going to be ok.
Sophia's powerchair is waiting at her bedside for the first ride, maybe this afternoon. Thank you all for the continued prayers.
Andrea
Monday, February 4, 2008 9:21 PM CST
Hi Everyone:
Sophia is doing very well. She is still intubated, resting very comfortably. Her heartrate has come down steadily. Once in a while she will dip a little in oxygen saturations during a respiratory treatment, but on the whole, she is recovering really well. She is back on her regular feeds, and is less and less sedated each day. She will smile and try to talk to me. And she has been giving the respiratory therapists a run for their money with lots of "mad looks" and shaking of the head "no".
Sophia has enjoyed having her sister around. It is wonderful to see Lila and show her where Sophia has been staying. There are more places to bring her in the new children's hospital. And last Saturday I brought her to "Pet Pals" - a program every weekend where they bring several dogs into the hospital. Lila smiled from ear to ear the whole hour, petting and kissing Cody, Riley and Maddie.
One funny little story that tells you alot about Lila: in all of the PICU rooms, there is a whiteboard with a "Pain Face Scale" at the top, a way for kids to communicate their level of discomfort. It goes from a semi-smiley face to a crying, distressed face. Lila kept looking at the last face, saying "he's sad...make him happy". She then made me draw a happy face over each face, so all of them are smiling and happy. That is Lila in a nutshell; she wants everyone & everything to be happy; she doesn't want anyone sad. She is a welcome burst of joy and energy during this whole experience.
We are beginning to discuss extubation. I don't feel like we are quite there yet...maybe later this week. I am certainly not in a hurry after the events of last week. Sophia will let me know when she is ready.
God bless,
Andrea
Friday, February 1, 2008 10:40 AM CST
Sophia is doing very well and resting comfortably. She has been on Q4 (respiratory treatments every four hours) the last 24 hours and is showing good progress. She slept more yesterday than I have seen in over a week. She still has alot of noise in her lungs, but is on a good path. She is back on her regular feeds at 75 cc/hour for 3 out of every 4 hours, so they are discontinuing TPN. The respiratory therapists are slowly adjusting the vent settings, in hopes that in four to five days they will mimick the bipap settings and then we can start talking about extubation.
Sophia's daddy & sister are coming this evening. She will be so happy to see them. We are hoping to keep Lila content over the weekend in the ICU and subzero weather:)
Thank you for continued prayers.
Andrea
Wednesday, January 30, 2008 8:04 PM CST
Sophia is in the PICU in Madison. She has RSV and is currently intubated. She was transported via air yesterday evening from Minnesota. She had been at Children's Minneapolis since last Thursday. She had a horrible crash on Monday and we had to intubate. Previously she had been on bipap. We had been doing treatments every two hours through the weekend with IPV, cough assist, suction, drainage, etc.
She is having treatments every two hours here in Madison. Her lungs sound a little bit better than yesterday. When we arrived here last night, she had a fever of almost 103 degrees and was breathing fast. She looked uncomfortable. Within an hour - after rigorous chest therapy, proper positioning, x-rays, fluid/antibiotic - the fever was down and she was resting very comfortably.
I will update on her progress tomorrow.
Andrea
Wednesday, December 19, 2007 10:26 PM CST
Happy Holidays!
Thanks for checking in. Its almost Christmas, and our last update was made right after Sophia’s spinal surgery in September.
It has been an interesting fall. Sophia’s recovery went smoothly, her back has healed and she sits up so nice & tall. The hardest part was the six weeks post-op when it required two trained adults to transfer her. There were times when I would be alone with both girls, so we would just have to hang out in Sophia’s room. This was easier said then done!
We then began a series of grueling but necessary appointments, most of them at Gillette: orthopedic, splinting, assistive technology, neurology, orthotics, physical, occupational and speech therapy, custom seating for powerchair, adaptive tray for powerchair, serial casting, then more casting because of a foot fracture. And in the midst of it all, attempting to go to preschool 2-3 times per week. We ended up spending far more time at Gillette than at school, and at times it was exhausting and frustrating.
Sophia has also had a few moderate illnesses this fall. Nothing “serious”, but enough to keep her out of commission for a week or two. Many times we had to go to appointments when she was not 100%, and that meant bringing all of her equipment with us.
I am, however, very thankful that we are approaching the holidays with a healthy family. It was almost a year ago today that Sophia, nurse Laura and I made a very harried trip to Madison, WI when Sophia became very sick. I will never forget the events of that evening, and how fragile and precious life can be. I am thankful to be celebrating Jesus’s birthday at home this year. We are also praying for our SMA friends - Kyle, Emily, Jenna, Jacob & Mary - that are fighting illnesses right now in hospitals throughout the country.
On a lighter note, Sophia and Lila are having a lot of fun together. Lila has become quite the little mother, with her babies, dolphins, and also her sister. She gives Sophia kisses when she is upset, telling her “its ok. Don’t cry” as she pats her on the head. She has learned how to reposition Sophia’s arm in the powerchair, put gum, pretzels, etc in her mouth, and hand her playthings. And since a very early age, Lila has learned some critical SMA sibling behavior, such as washing her hands as soon as she comes in the door, and using her elbow to hit an elevator button or handicapped door entrance. Lila had her first concert with her preschool, and did very well, smiling and standing in the front row in front of a large audience. Sophia drove her chair close to Lila and sat quietly and proudly watching her sister.
We are happy to announce the arrival of Sophia’s nurse Laura’s baby at the end of November: Ella Mae Moon. The girls are very excited with this new little plaything, and it is always fun to see Big Brother Sam. We miss Laura, but are happy that she can stay home with both kids for the time being.
A highlight for this Christmas season was Sophia attending the Nutcracker Ballet with her best bud Mary Kate. The girls sat together, side by side in their powerchairs, totally engaged in the performance. Sophia’s nurse Audrey is one of the principle dancers, so she was very excited to see her on stage. And afterward Audrey and another dancer came out from backstage, in make-up and ballet shoes, to greet the girls and autograph their programs. It was a magical day. It is always so great to get the girls together, a feat that is not easy considering school schedules and illnesses. Sophia and I cherish our friendship with Mary Kate and her mommy. It nice to have someone nearby that walks the same path as you.
We pray for a peaceful Christmas & New Years.
God bless,
Andrea & Doug
Saturday, September 8, 2007 1:11 PM CDT
Sophia has been moved out of the PICU and into an inpatient room. She is doing very well. Her respiratory is great; at this point it is managing the pain and getting her back up to normal feeds.
Physical therapy is coming by today to teach us how to lift Sophia. We are going to put her in her powerchair for the first time since surgery. She is still sleeping alot...pain takes alot of energy.
We spoke with the surgeon the other day & he showed us before & after x-rays of the growth rod. It was absolutely amazing to see. Sophia's x-ray from this past June showed her progressing curve - in about the mid-40's - that was very high up in the spine. In 2D, it looked like her upper left lobe was almost completely pinched off by the angle of the spine curve. After surgery, her curve went from the mid-40's to around 18 degrees. More critically, the surgery will prevent scoliosis progression and the pinching of her respiratory space. This makes all of the stress & pain of surgery well worth it, although I don't know if Sophia would agree at this point:)
We anticipate going home in the next two days. Thank you for continued prayers. Please add Lila to your prayers - she came down with a cold and could not come to Madison to visit her sister. We pray for a healthy household to come home to.
Andrea & Doug
Friday, September 7, 2007 10:05 AM CDT
Sophia was extubated yesterday and is doing great. We are starting to see the old Sophia emerge again. She asked for books yesterday, and to watch the movie "Dinosaur", one of her current favorites. She is even comfortable off of the bipap, and it is nice to see her face without any tubes. Her voice is hoarse, but she is still telling us what to do. The dressing was changed this morning on her incision site, so we were able to see it for the first time. It is not as bad as I anticipated.
Her GI movement is a little slow right now and her tummy is distended. They started her regular food this morning, which may help move things along.
A physical therapist came in this morning to teach us how to transport her and how to properly stretch her. We will all have to learn how to lift and carry her differently.
RE: Tooth Update: Sophia lost one tooth during pre-surgery intubation. Well, now she has lost her OTHER front tooth. The respiratory therapist noticed the loose tooth during chest therapy. A resident came in and pulled it out. It was very loose and ready to come out. So now Sophia has no front teeth:( I have not shown her a mirror yet.
Please keep praying for a smooth recovery with little pain.
Andrea & Doug
Tuesday, September 4, 2007 8:15 PM CDT
Sophia is out of surgery and sleeping peacefully. Praise the Lord! She did extremely well. The surgeon was very happy with the surgery. She was in the OR for about 5 hours - it was a long day waiting & praying. She is still intubated, and will be until tomorrow, but is sedated and comfortable. The team here in Madison is taking great care of her.
The only surprise from the surgery so far is that Sophia lost one of her front teeth during intubation:( We are not quite sure how to tell her about this one yet. They saved the tooth for us, so I guess she will be getting her first visit from the tooth fairy.
Thank you for your prayers.
Andrea & Doug
Tuesday, September 4, 2007 2:22 PM CDT
Hi Everyone:
Sophia went into surgery this morning at 10:30 a.m. Thank you for checking in. We are praying that the surgery goes very smoothly and that she remains healthy & strong. We ask for your prayers. We will update you when she is in recovery.
Sophia had a great day yesterday in Madison with mommy & daddy, exploring the new Children's Hospital in her powerchair. We are looking forward to her driving like a pro again.
Andrea
Wednesday, August 15, 2007 9:19 PM CDT
Hi Everyone and thanks for checking in.
Summer is flying by! This has been a busy time for our family: summer school for both girls, the FSMA national conference in Chicago, a couple of trips out of town, and lots and lots of swimming. This has also been a period of numerous minor but annoying health challenges: sinus infections, ear infections, strep throat, etc. We are praying for a healthy late summer & fall, especially as we gear up for Sophia’s surgery.
Sophia is scheduled to have growth rod surgery in Madison on September 4th. Please keep her in your prayers. This is a major surgery that involves the placement of metal rods next to the spine to act as an internal splint and correct some of the curvature from the scoliosis. We have been watching Sophia’s curve for several years, and two different orthopedic surgeons agree that this would be an ideal time for her to have the procedure. This surgery should help her from a respiratory standpoint, since the spine curvature diminishes the space where the lungs can grow & expand. It will also help her sit up straighter without the use of her TLSO (trunk brace). The team in Madison is very experienced with this type of surgery for SMA kids, so we will be in the best hands.
Sophia and Lila have had so much fun together this summer. They love to chase each other around the neighborhood, Sophia in her powerchair and Lila in her buggy. And they have enjoyed our new playset in the backyard (thank you Nana Judie & Papa Bill).
Hope everyone enjoys the last few weeks of summer. Check back again soon, as we will be updating from Madison.
Doug, Andrea, Sophia & Lila
Friday, January 5, 2007 8:41 PM CST
Sophia's home!
Sophia was discharged from UW Children's Hospital on Wednesday and made it home in time to celebrate Lila's birthday. Grandpa Jerry & Nurse Laura helped Sophia & I pack up & drive back to Minneapolis. Sophia did great on the trip home, and was insisting that Lila is now "two and a half", not just two.
I will update more later. For now we are trying to unpack and get some rest!
God bless,
Andrea, Doug, Sophia & Lila
Tuesday, January 2, 2007 1:43 PM CST
Sophia's going home tomorrow!!! She will be discharged in the morning, and we will make the trip home. And perfect timing, because tomorrow is her little sister Lila's second birthday!!! A special thanks to Grandpa Jerry & Sophia's nurse Laura for coming to Madison today to help me pack everything up and bring Sophia home. And thank you Gramma Linda & Nana Judie for watching Lila.
Sophia was moved out of the PICU yesterday. She has been doing very well the past couple of days. She is receiving chest therapy treatments every four hours during the day and only as needed during the night. Last night she was able to sleep nine hours without interruption.
Thank you to Beth & Dani Pruitt, who have been sending Sophia wonderful little notes & treats. She loved the stickers, and she just opened Dani's painting today. She did not want me to take it away, and is holding it in her bed. She wants to bring it home and put it up on her art wall.
Thank you to everyone here at UW Madison. Dr. Schroth & her team are simply amazing. I only wish this methodology and knowledge of SMA kids was present in more hopitals. We have learned so much by watching them take care of Sophia. THANK YOU!
And thank you to everyone for your prayers and notes of encouragement. It has helped us get through the last 15 days. I will continue to provide updates as we settle back in at home. Sophia can't wait to drive her powerchair again and to celebrate Lila's birthday at home.
God bless,
Andrea & Sophia
Sunday, December 31, 2006 6:12 PM CST
Happy New Year's Eve!
I have just returned to Madison after being gone for 24 hours. I brought Lila back with me and Sophia is thrilled. Sophia looks like a changed girl; her cheeks are rosy, she spends much more time off the bipap, her numbers are great, and she just seems like her old self. I guess 24 hours with her daddy worked miracles!
It is great to have the girls together again. Lila sat in Sophia's bed, playing with all of her toys & balloons. When Sophia saw Lila, her face spread into the biggest smile I have seen in weeks.
Lila seems to have grown up so much in the ten days I didn't see her. She is talking all the time. Her favorite new thing is to pull a chair up to the bathroom sink and wash her hands, fill cups and drink water. She is also very adept at opening gifts. Thanks again to Nana Judie, Papa Bill & Cassie for taking such good care of her. Lila has been getting out quite a bit, too, thanks to Cassie. This week it was a high school girls basketball game and a round of bowling.
Hope everyone is having a fun New Years.
God bless, Andrea, Doug, Sophia & Lila
Friday, December 29, 2006 3:52 PM CST
Hi Everyone:
Sophia had a great day yesterday. Today has been a little bit more up & down. This morning they reduced her treatments to every 4 hours instead of 2. During her noon chest therapy treatment, she dropped a bit during coughing. We worked on her for quite a while, finally getting her back up into the 90's, with the help of a little O2 bleeding into her bipap. I think she is trying to work something out; we are just having a hard time getting it. She is now resting comfortably on her bipap.
On the whole, she is in good spirits and was tolerating a little more time off of the bipap. I am trying to change positions on her frequently; there are not alot of options in a hospital bed. I would love to put her in a bathtub and let her dance around a bit.
Lila is getting over a cold and ear infection. I pray that she will heal quickly, so tht she can come to Madison and visit. We miss her so much! Her second birthday is next week...I hope we can spend it with her. Doug spent the last couple of days at the office, and is heading back to Madison this afternoon. Sophia is looking forward to seeing her daddy again!
Andrea & Sophia
Wednesday, December 27, 2006 6:33 PM CST
Hello Everyone.
Sophia was extubated to the bipap this morning. Although this is a critical step on her road to recovery, it has been a "touch & go" kind of day. She had to re-acquaint herself with the bipap, and it has not been a completely smooth road. Her oxygen saturations would dip to the point where they increased the number of treatments (she is back to Q2, or every two hours) and they have been bleeding some oxygen into the bipap. At one point they were holding off her feeds due to some discussion of possible re-intubation if she did not improve. She would even dip a little in between treatments, so Dr. Schroth did several rounds of coughs on her until she was back at 95+.
Thankfully, she is now resting peacefully with an oxygen saturation of 100 percent and a heartrate of 110. She still has some stuff to work out of those lungs, so I think the next few days are going to be alot of work. We had gotten used to her stability on the vent and treatments every four hours, so we have entered a new chapter. Also, I am now braving it by myself at the hospital with Sophia since Doug had to leave today to take care of some buisness at home, as well as see little Lila and give my parents a well-deserved break!
Sophia had a very special visitor today: Amy Drysdale, who drove from Rochester to come say hi. It was great to see Amy, and she had a very calming affect on Sophia, rubbing her back and talking quietly to her. Thank you for coming Amy!
Thank you for all of your prayers & guestbook notes. Keep praying for Sophia please!
Andrea
Tuesday, December 26, 2006 11:49 AM CST
Hello all:
Just a quick note to let you know that we will not be doing the extubation today. Sophia is doing fine, but we want to give her a little more rest and nourishment before the "big day." We'll let you know how things go on Wednesday.
See album for hospital pics.
Regards,
The Doebbert Family.
Monday, December 25, 2006 11:41 AM CST
Merry Christmas!
Thank you everyone for all of your prayers. Sophia continues to improve a little each day. They have reduced her chest therapy treatments from every two hours to every three hours. This means she gets to sleep for a full two hours in between treatments. She is very tired, so I know she will benefit from the extra sleep. Her chest x-rays are showing gradual improvement. Her white blood cell count is down to 5,200. She is tolerating her feedings.
Sophia does not like the IPV treatment part of chest therapy. A couple of days ago, she would look so distressed during the treatment that she would "lose consciousness" for a minute or so. They were a little concerned about this, so an EEG (brain scan) was ordered to check for seizure activity. Thankfully, the report came back clear. The IPV is helping her get better, so it must be continued. The respiratory therapists are giving her breaks every two minutes during treatments.
A family that we have never met came to the hospital yesterday and brought Sophia & Lila numerous Christmas presents. Santa also paid Sophia a visit and brought a big bag of toys. Sophia had a few visitors over the weekend: Audrey, one of her nurses from back home, and Mary, a long time friend of Helen Taylor's who lives in Madison. It was nice to see a familiar face as well as meeting someone new. She is having fun opening her presents. She is still sedated, but will have moments of good responsiveness. The doctors are discussing the possibility of extubating her tomorrow (Tuesday). We are praying that she will transition smoothly to the Bipap.
We wish everyone a happy, healthy day as we celebrate the birth of Jesus.
God bless,
Andrea & Doug
Friday, December 22, 2006 7:11 PM CST
Season Greetings from the PICU(Pediatric Intensive Care Unit) in Madison, WI.
It has been a good 7 months since our last entry. The spring and summer were wonderful times, and we'll certainly fill you in on that later. For now, we'd like to catch you up on Sophia's current hospitalization.
Sophia was admitted to UW Hospital Wednesday evening. She had been fighting pneumonia at home, and we thought she was getting better but made a turn for the worse on Tuesday. On Wednesday morning, Sophia's nurse Laura and I decided to try to make the trip to Madison. We had a limited supply of oxygen and it was a stressful trip to make because we were racing against time. She was stable when we left, and I just wanted to get her to Madison. Laura did a fantastic job with Sophia during the roadtrip: monitoring her sats, using just enough oxygen, hydrating, feeding and medicating her and just keeping her happy. And carefully asking "how much longer". The team was waiting for us at the ER. Sophia stayed on the bipap during the transition. She was not doing great, but was fairly stable during this time in the ER and the transport to the PICU. Dr. Schroth met us in the ER and helped escort her to PICU. They switched her bipap to a stronger one and increased her settings. There was talk about intubation if her oxygen saturations did not improve after chest therapy.
It was during the chest therapy that we ran into trouble. The RTs used an IPV machine on Sophia, which really helped move some of the stuff in her lungs. Her secretions were extremely thick. After they finished the IPV, Sophia's O2 dropped to the 50's. They tried coughing her and bagging her and she did not respond, so a team was assembled to do immediate intubation. Watching her O2 drop and not seeing any response to the measures that were being taken made my heart sink. Her color was not looking good, and I thought to myself "is this it?" and I couldn't imagine that I had to say goodbye to her. By this point the intubation was complete, and her numbers were still not improving. It felt like time stood still.
I will never forget the next series of events. God had paved our way to Madison, and at this point I believe he simply took over the hands of the doctors. Dr. Schroth, who had been out of the room when all of this was happening, came into the room, looked at Sophia, and took a long, long suction catheter and placed it all the way down the intubation tube. Thick, thick mucous slowly came up through the tube. She repeated this six, seven, eight times, until nothing more came. After each deep suction, Sophia's O2 would inch up, just a tiny bit, until she was finally in the 70's, then the 80's. Then, with 100 percent bleeding into the vent, she climbed into the 90's again. Her color slowly returned. She was well sedated, but comfortable and stable.
Thank you, God, for working a miracle. And thank you, Dr. Schroth, for being there, not only with Sophia at that critical moment, but for dedicating yourself to the care and management of kids with SMA. There is simply no one that knows these kids better, or what to do in time of a crisis.
After things had settled down and Sophia was resting comfortably, Dr. Schroth called Doug - who was still in Minneapolis with Lila at this time - and told him about the intubation, the crash, and that Sophia is extremely sick and for "peace of mind" he should come tonight. Doug made arrangements ASAP with my mom to take Lila, and arrived in Madison at 3:30 a.m. Thursday morning.
Sophia has made steady, slow progress over the last two days. Her white blood cell count was over 30,000 when we checked into the hospital. It is now around 9,000. The xrays show gradual clearing in the lungs. The doctors are very pleased, although we have a long journey ahead of us. They have reduced the oxygen bleed from 100 percent to 30 percent (room air is around 21 percent oxygen). Her heartrate has come down tremendously, and her oxygen saturations have stayed in the 97 percent range. She now longer "dips" during treatments. She is receiving chest therapy every two hours around the clock. It takes an hour to do, so she doesn't get alot of time to rest, but it is helping to clear her lungs out. The whole team here in Madison is awesome. The RTs and nurses keep so busy, and it gives Doug and I a chance to hold Sophia's hand and make her comfortable. She is still heavily sedated, but will have periods of responsiveness and even grumpiness, which is great to see. She wants to talk and can't understand what the tube down her throat is all about. But when she does sleep, she looks so beautiful and restful. A volunteer made a knit cross, and it lays at the head of her bed. God is working through this team here.
Thank you to all of our family and friends that are helping us get through this. Laura - this mad dash to Madison was possible because of you. Thank you for being there for Sophia, and for me. Laura stood by my side during that awful, awful crash, and I thank God that she has become such an important part of our family. Sophia loves her so much, and waved goodbye as Laura was leaving yesterday. The day she left, Laura proudly wore her "Wipe out SMA" t-shirt around the ICU and helped us keep Sophia happy.
Thank you Jeanna and Christen for all of the phone calls, support and advice. You have been there before with Elizabeth, and your experience (and attitude!) has helped me get through this. Thank you Kim S. for everything. Sophia's eyes opened so wide when she saw the balloons and chocolate. It helped distract her during an uncomfortable procedure. And thank you Jana G. for the plush poodle and balloon - they are at the head of her bed. Thank you, Aunt Darla, for the Christmas care package with all the goodies. It was so fun to open and show Sophia. Doug decorated the room with the tree, stockings, etc. and it feels very festive. Thank you Nana Judie and Papa Bill for taking care of little Lila for us. We couldn't be here without your help. Thank you Glenna, Sharron, Sue, Lynne, Donna, Abby, Audrey, Jim & Gretchen Hanson, Dave & Jinny Kelby, Uncle Scott and Gramma Linda & Grandpa Jerry for your support and phone calls to check in. Thank you Doug for being the best Daddy Sophia could ever have. And most of all, thank you God for watching over our little girl.
Andrea & Doug
Wednesday, May 31, 2006 8:06 AM CDT
Well hello everyone!
Lots of things are going on these days. Sorry it has taken so long for us to get in touch with you.
Lila and Sophia are having a great time together. One of their favorite activities is for Lila to cruise around in her buggy and Sophia and Daddy will chase her in Sophia's tumble-form chair (adaptive-hard foam) which sits on a small base with casters. Lila yelps and squeals and Sophia enjoys it thoroughly.
When the weather is nice, we head outdoors. Sophia has become highly adept in her power chair. This is great, as it has given her a real taste of independence. If she wants to drive away from us and go check out the neighbor's dog, she can. If she has had "enough" she will simply cut across our lawn, hang a sharp right, drive up the 15-foot accessible ramp, and park her chair at the main entrance to the house. It's quite a sight.
Sophia is starting to communicate very well. It is easy to understand when she likes or dislikes something. She'll shake her head no, or nod her head excitedly when she wants to do something. She is speaking in small sentences, and repeating a lot of what she hears...yikes! Her eyes are meltingly expressive.
On the medical front, she is thriving. She zipped through the winter with one minor cold, and then recently had to deal with strep throat. She handled each situation gracefully, and kept her and the family's spirits up. We love this girl so much!
Sophia likes to play dress up. She has crowns, tiaras, faux feather boas, slippers, beads, makeup, lip gloss...you name it, it's in her closet. She has a very lady-like demeanor and carries herself with the utmost poise.
Lila is Sophia's primary source of amusement. Sophia gets a kick out of watching Lila climb around the sofa, or pulling toys out of the toy chest and flinging them across the living room.
Now that the weather is heating up so much, we'll be sure to spend some extra time over at Nana Judie's and Papa Bill's. They have a wonderful outdoor pool, and both the girls love to spend time in it. It is a great way for Sophia to get some exercise, and Lila can burn off some of that extra energy.
In a week or two the whole family plus Abby, our nurse, is going up to Detroit Lakes for a few days, for Daddy's 20th-year high school reunion. We'll get lots of time with Grandpa Jerry and Grandma Linda. D.L is a great place to be in the summer, and I'm sure we will have lots to discuss when we get back.
Take care and enjoy June!
The Doebberts.
Wednesday, January 25, 2006 11:05 PM CST
Almost 1/12th the way through 2006...can you believe it? We hope everyone is off to a great start for the new year. It will no doubt be a busy one.
Sophia has become so darn good at driving her powerchair. Our walls and floor molding have taken a bit of a beating, but it is worth it. She can maneuver it into some pretty tight spots. She now travels throughout the living room, down the hallway, into both bedrooms and into the office. Her favorite excursion is into the kitchen, where she parks her chair in front of the dishwasher or refrigerator and demands "open!" When we open the fridge door, she'll say "hmmmmmmm." They do learn young, don't they?
Now that the lift has been installed in our van, we can take Sophia and her chair on outings, and does she love it! She is a bit tentative when we first arrive (church, Daddy's office, the library, grocery store) but she quickly starts exploring. Andrea and I incorrectly assumed she would follow us wherever we went. Instead, she takes off in completely opposite directions. We have to rein her in. It's a challenge we love having to face.
Sophia's loves to play with marbles on a cookie sheet. When she's done, we'll put them away in the jewelry box, complete with secret doors, that was given to her by Nana Judy. She has also been into organizing stickers. She is very detail-oriented and loves to focus.
And when she is not playing her little games or working with her specialists or nurses (Laura and Abby, thank you...you are both indispensible!) she is busy taking care of her little sister, Lila. A few weeks ago, Andrea was giving them both a bath, and Lila was precariously standing up in the tub. After a quick assessment, Sophia blurted out "Lila, sit down!"
The holidays were very busy, but all the Doebberts and Bowles were able to get together. Lila got a shiny new tricycle from Grandpa and Grandma Doebbert. We are anticipating some exciting races between Lila and Sophia this summer.
We are dealing with some scoliosis issues with Sophia. She is growing so quickly that her spine is having a hard time keeping up with her height. Andrea has been very proactive, however, and we will be reviewing our options later this spring.
Thank you all for checking in. We look forward to updating you soon :)
The Doebberts
Saturday, November 19, 2005 0:06 AM CST
Hi Everyone:
We are having a great fall. The weather has been incredible: lots of Indian summer sunshine and beautiful colors. Sophia has been spending a lot more time in her powerchair. She loves exploring our backyard, getting covered with leaves, dirt and bugs. It is a beautiful thing to watch.
We spent a day in Madison in mid-November, as well as some time at Gillette. The doctors are very, very pleased with how well she is doing. Sometimes you just have to stop and celebrate these moments. She amazes us everyday.
Sophia’s latest craze is Elmo. She asks for the Elmo Great Outdoors DVD over and over, and will not be fooled by any other DVD you try. Nana Judie bought her a stuffed Elmo for the Madison trip, and now she goes nowhere without him. She is also very adept at telling us “no” and “I want”. She is definitely a very spunky, if not stubborn, two year old.
One of Sophia’s nurses, Abby, had a baby boy, Ryan Joseph, at the end of October. His arrival was much anticipated, and Sophia loved meeting him. He is a beautiful baby with a tuft of red hair. We miss Abby but know she is enjoying her bonding time with the little one. Sophia’s nurse Laura returned from her maternity leave just as Abby was leaving. Laura is mom to Sam, a darling little five month old. Sophia & Lila always enjoys his visits. We are really happy to have Laura back. She and Sophia have a great time together. We have recently added a third nurse, Mary, to our team since Abby is on maternity leave. Unbelievably, Mary is also pregnant and due in February with – yes, you guessed it – a boy. I have tried to ask Sophia why she requests that a) all of her nurses are pregnant and b) they all have boys, but she has declined to elaborate on this.
Our latest acquisition is a full size van that will accommodate Sophia’s powerchair. We will be having a rear lift installed later this month. We look forward to being able to transport Sophia’s chair around town, especially with winter on its way. Papa Bill & Nana Judie were instrumental in helping us get the van set up for our trip to Madison, as well as watching Lila while we were gone. Thank you seems inadequate for all they do for us.
We will be celebrating Thanksgiving with Sophia’s uncle Scott & aunt Ashley next week, as well as cousins Noah, Hayden & Amelia and Ashley’s father, Chuck. The girls always look forward to seeing their crazy cousins. They are lucky to see them regularly since the boys’ school is very near our house.
Little sister Lila is doing great as well. She has cut two bottom teeth, and likes to show them off with an ear-to-ear smile. She makes us laugh with her funny “lemon lips” expression, and is a delightful bundle of energy. Lila is keenly interested in everything that Sophia has & does. We recently created a dummy suction bag just for Lila, complete with BiPap tubing, syringes and masks for her to play with. Sophia truly loves having her around.
Hope everyone is well and has a great Thanksgiving. Thank you for your continued support & prayers.
God bless,
Doug, Andrea, Sophia & Lila
Wednesday, August 24, 2005 4:42 PM CDT
Hello all:
Sophia has had a busy summer. Her second birthday was filled with lots of supportive family and friends. Jerry and Linda (Sophia's paternal grandparents) helped get the house ready and made some delicious sloppy joes. She swam, opened presents, and had a chance to show off her powerchair, which she loves to do. If you want to see a 30-second video "highlight" of her birthday party, go to www.doebbertfamily.com and view Sophia's Album/Video/Birthday Party.
Also, Sophia's maternal grandparents, Bill and Judie, moved into a townhouse recently. It has a beautiful pool, and Sophia has enjoyed spending time over there, as she can also meet up with her cousins Noah, Hayden, and Amelia. We have no doubt that she will be a regular next summer. Thanks again Judie and Bill for everything you've done.
Uncle Scott gave Sophia her first boat ride this summer. That was a lot of fun. It's a fast boat, and she loved the feeling of quickly gliding across the water. Her beautiful hair was flowing in the wind, and she grinned from ear to ear.
Aunt Darla has been over to the house frequently. Everyone benefits from this, as Andrea and I can get some stuff done around the house, and she and Sophia can become even better friends.
And let's not forget about Sophia's younger sister Lila! The two of them have been hitting it off greatly. Lila is getting more mobile, so we need to make sure she isn't pulling at Sophia's hair, or nibbling on her Mic-Key, (g-tube valve) but it usually all works out.
Lastly, we would like to mention that we signed a purchase agreement for our first house, and expect to close on it soon. This will be a great relief, and allow us to focus more on our home environment.
Thank you again for visiting our site. Little Pumpkin appreciates your prayers, concerns, and love.
Friday, July 1, 2005 10:28 PM CDT
We are in!
That's right, the Doebbert family has successfully moved approximately 1 mile south of our previous residence. Our new digs allow us to do most of our living on one level, which will better enable us to care for Sophia. It's a bit bigger, accommodating some of Sophia's larger equipment. The attached garage makes transportation (powerchair, medical equipment to and from the minivan)easier as well.
Sophia is doing absolutely great. She is maintaining strength, and seems to have become a bit stronger since going off Rilutek, her trial drug medicine. Whether this means the Rilutek's effects were subtle, and surfaced slowly, we are not sure. For now, we are going to keep her off it, and then decide the next step.
She is very happy, and has really taking to humming/singing along with the TV, radio, videos, etc. It's fun to watch her tap her delicate fingers or shake her head to the beat. Andrea and I feel that music can be a powerful tool for her, so we would like to expose her to it whenever possible.
Sunday is typically our most routine day of the week. In the morning, after Sophia's chest therapy, we go to the YMCA. It's a bit of a production, but everyone ends up in the kiddy pool...it's about 20 feet by 30 feet by 3 feet deep, and nice and warm. We alternate holding Sophia and Lila. Lila gets real excited in the water. Sophia becomes calm. It is such a liberating experience for Sophia. She can move her arms and legs better. We usually stay in the water for 45 minutes to an hour. Then we go to Chipotle's (mexican deli) and return home. The swim has tired Sophia, and she takes a three hour nap!
We then scramble to get some cleaning done, dinner made, and before we know it, it's time for our bedtime rituals. It feels good to stay on a schedule, even if it is only for one day.
Sophia turns two years old on July 16th, and we will be having some friends and family over to celebrate. She will probably show off her new powerchair, which arrived Memorial Day Weekend. She has been learning to turn circles and stop. By the end of the Summer I am sure we will be chasing her around the house and down the driveway.
Sophia's beloved nurse Laura is now on maternity leave after giving birth to Sam, a beautiful baby boy. She and Sophia have a wonderful friendship and we will miss her. Our new nurse, Abby, is great and Sophia likes her a lot. We look forward to working with her.
Other than that, we would like to finish unpacking, and get to better know this really friendly neighborhood. With a stroke of luck, we'll even sell our previous house. Anyone know anyone that wants to move into a cute home in Edina?
Thank you all so much for visiting Sophia's site. We are excited to share more of our experiences with you.
Doug and Andrea
Thursday, April 14, 2005 8:49 AM CDT
Hello!
Happy Spring, or should we say Summer?
Nice weather is such a convenience. Sophia loves the fact that it takes us 3 minutes as opposed to 15 to get ready for a stroll outdoors. Last night we took a walk around our park, and then through the neighboorhood. It was rejuvinating to see all of the family activity. Kids riding bikes, playing on the swings, softball practice, basketball games...a welcome change to life indoors.
We are beginning an important medical transition for Sophia. Per the trial medicine program's protocol, we are to take Sophia off Rilutek. We want to know if the Rilutek is in part responsible for her healthy condition. It was a difficult thing to do, because Sophia is doing so well. We have been assured that if her condition turns for the worse, however, that we can get her back on the medication so she can regain her baseline status. After three months, if her condition remains stable, we will assess our next options.
In the meantime, we are making final adjustments to Sophia's powerchair design, which we hope to receive in early July (keep your fingers crossed!). That will be a wonderful, liberating moment for Sophia. She will be able to move around the house and the neighborhood on her own free will. And Sophia is ready for it. She is curious, intelligent, and adventuresome.
Sophia can name the different parts of the face and identify and say "toes." She says "mom" and "dad", and will sing "high-ho!" Music affects her profoundly. She moves her fingers and wiggles her trunk to the beat. It is a lot of fun.
Of course, Lila and Sophia have become very good friends. They lay on the floor in the living room and we play "fort," with bedsheets. Sophia likes it when we turn out the lights and play with flashlights.
Laura, our nurse, has been very helpful during the week. She comes 3 to 4 days, and has gotten to know our "system" very well. She is indispensible, and Sophia likes her a lot. Fortunately for Laura, and slightly unfortunately for us, she is pregnant, and we will have to replace her. That will be no easy task.
Thanks again for checking out Sophia's website. I have not been able to update the family website (www.doebbertfamily.com), as my video editing software is not functioning properly. I will add some new photo albums soon, however.
The Doebberts
Friday, March 11, 2005 3:45 PM CST
Hello Friends and Family.
We wanted to let you know that all is well at the Doebbert household. Lila and Sophia are having a lot of fun together. Sophia loves to pull Lila's nuk out of her mouth. She knows she can get away with it for now.
However, Lila is getting bigger by the day, and it won't be long before they are evenly matched...scary thought.
Sophia is enjoying her demo powerchair. She has been getting very proficient with its controls, and her eyes light up every time she gets into it. If our discussions with the insurance company go as planned, we Sophia could be "in her own wheels" by the end of the summer. Let's keep our fingers crossed.
We are traveling to Madison in April 1st for an overall checkup and to discuss some options for medication after Sophia's trial medicine program closes. We look forward to furthering her stability with some other medical options.
We thank everyone once again for your prayers and support. They mean a lot to our family. Sophia's smile should be evidence of that.
If you would like to see some additional photos and video of sophia, check out a recent gallery at:
http://doebbertfamily.com/v-web/gallery/Sophia
Click on her photo album, and you can then view it as a slideshow or by individual pictures. The controls are on the top of the page.
Good bye for now!
Sunday, February 13, 2005 10:24 PM CST
Well...
It has been a busy month. Lila and Sophia are becoming very good friends and sisters. The first couple of weeks were pretty calm, with Lila sleeping quite a bit. Now, she is awake for the majority of the day, and keeps us all on our game.
Sophia is taking everything in stride. She pets Lila when her sister is near, and can already say her name. When Lila is crying, Sophia gets a sad look on her face...she is always watching out for her.
The other big thing in Sophia's life is her powerchair trials. We have been issued a demo chair, which enables her to practice before we apply for her own. Sometimes we take her over to one of the malls, where she can use the wide hallways, watch the activity, and smile at people. She is so wonderful in public.
We have been able to get Sophia up into her stander for periods of 45-50 minutes at a time. This affords her a different social perspective as well as the time to apply some pressure to her muscles and bones.
Sophia is such a fun little girl. She continues to remain strong and stable. We are constantly reminding people that if they would like to visit, they must be healthy and have not been recently exposed to a sick person. Please keep that in mind when you are thinking about paying us a visit.
God Bless,
Doug, Andrea, Sophia & Lila
Wednesday, January 5, 2005 11:47 PM CST
Just a quick note to let everyone know that it was a special holiday season for us.
Sophia has a sister! Lila May Doebbert was born on Monday, January 3rd at 4:02 a.m. She weighed 7 pounds 13 ounces and was 19 1/2 inches long. Her delivery was more arduous than Sophia's, but certainly worth it in the end!
Sophia is pretty comfortable with her new "friend." She is curious and gentle, and has yet to display any sign of jealousy. We will be keeping our fingers crossed on that one.
Sophia continues to remain quite stable. As you can tell, she is growing and maturing by the day. She is into giggling at her sister, and imitating her parents' words and exclaimations. We have also been coming up with some creative, light-weight toys that have delighted her. Her mind is a sponge, and we are constantly feeding it. She is really into pop-up books.
Thank you everyone for being part of Sophia's successes. Happy New Year, and God bless.
Tuesday, December 21, 2004 11:13 PM CST
Happy Holidays!
It has been a busy six weeks. Sophia is doing very well. She has been working with her occupational therapist, and having fun sorting light blocks, wooden rings, and doing other brainy things. She loves to help turn pages in books. She can grab light bowls and slide them around on the counter. Anything that produces a noise and gets mommy and daddy's attention...she's doing it.
We want to thank our friends and family that have supported us this year. Your love and care lift us up during the tough times. Judie Bowles, Andrea's mom, also deserves some special recognition, as she has spent countless hours helping out Andrea.
We also have some part time nursing help. Although this will eventually prove to be useful, especially when number two comes along, (less than three weeks) it has been exhaustive for Andrea to teach them how to care for Sophia. They are wonderful, however, and we look forward to working with them.
Sophia is getting so tall! She tends to dwarf many two and three-year olds. Her intellectual prowess has been noted by her special ed teachers as well. She will point to daddy and mommy's eyes and ears and say, "Eye...or ear!" She also says yah, yah, yah, blah, blah, blah, and right, hey, hi and bye. (Even if someone isn't leaving, they get the hint and eventually leave)
You will notice she is starting to use her stander, which allows her to maintain a vertical position. It is on wheels, so we can bring her to the dinner table and socialize with her. She loves the new perspective, and can typically tolerate it for 10-20 minutes.
It is fun being a part of Sophia's life. Andrea and I are so proud of her. She continues to challenge us with the aim of making us better parents.
I would like to take a moment to thank Andrea for everything she has done in the last 12 months. her dedication to Sophia is unparalleled. She is forever looking ways to keep up with Sophia's brilliant mind, and is intensely vigilant regarding her physical care. Her efforts are never-ending; all this in light of her upcoming delivery of a second baby. I don't know where how she summons the strength to do what she does on a daily basis.
So I will close this entry by wishing everyone a Merry Christmas and a Happy New Year. Sophia is excited to meet her sister. We love you all.
Doug, Andrea, and Sophia
Tuesday, November 9, 2004 12:52 PM CST
Hello everyone:
Sophia wants everyone to know that it has been a busy fall and that she is looking forward to the holidays. She went trick or treating on Halloween with her cousins Noah, Hayden & Amelia and had a lot of fun. She enjoyed dressing up as a cat, being outdoors and seeing all of the neighborhood children in costumes. She even indulged in a bit of chocolate.
Our little pumpkin is doing so well. We rearranged her nursery to accomodate her equipment, and a friend of the family, Helen Taylor, and her Nana Judie, gave her a TV with a DVD player to watch when we do chest therapy. She has been watching Alice in Wonderland, Thomas the Train, and lots of fun movies. Sometimes she imitates the sounds of the characters.
She can meow like a kitty, and baaaaa like a sheep...very cute stuff.
This week Sophia started working with her physical therapist, who will engage her in various excercises and positions that will keep her muscles and joints toned and flexible.
The clinical trial treatments are going well. There have been no adverse side effects, something that was of moderate concern to us. She has responded very well to the medication, which she takes with her daily feedings through the gastro-intestinal tube.
The upcoming winter makes us a bit nervous, as it brings common colds and viruses to many households. Please understand that if you are any of your family members are sick, we request that you wait until you are healthy before coming into contact with Sophia. We thank God for blessing her with continued health and strength.
The Doebberts
Friday, October 15, 2004 5:58 PM CDT
Happy 15 month birthday Pumpkin! Sophia is enjoying the turning of the leaves and the flurry of activity that accompanies a busy fall. Grandma Linda and Grandpa Jerry bought her a Halloween outfit that she can wear when we go on our pumpkin hunt this week. We hope to come back with a couple of beauties.
Speaking of beauty…who would argue that Sophia is not growing prettier by the day? Her smiles and giggles continue to warm the hearts of all her friends and family. As for her hair-there’s plenty of that. Complete with full curls in the back. She’s our little angel.
Sophia has been making marvelous strides. Since July, her weight has increased from 14.5 pounds to 18.75 pounds! She is sleeping very well at night, and has limitless energy during the days. Our challenge now is getting her to sleep before 10:00 p.m. Her overwhelming sense of curiosity makes this task difficult.
Her therapists are excited with Sophia’s progress, particularly her developed memory. Sophia will be in the midst of an activity and say baaalll! She wants us to get her bouncy ball out of the toy chest, which we are more than happy to do. Andrea has also been playing some fun organizational and stacking games with Sophia, and she tears right into it and gets the job done. It is so encouraging to see Sophia recognize her own accomplishments.
Today was an important day. As part of Sophia’s participation in AMSmart research study, Sophia received her first dose of Rilutek, a medication that works to attenuate the progression of SMA. Sophia has had to endure a lot of trips to the hospital and clinical observations. It has been a tiring time of preparation for her.
We continue to ask for your prayers and support. Winter can be a difficult time for SMA patients. Colds and flus run rampant, so it is important that we keep our little darling as healthy as possible. Visitors are welcome; however, we cannot accept guests that are sick or who are living with family members that are sick. Take care and God bless.
Tuesday, September 21, 2004 0:11 AM CDT
We've had a good week. We are now participating in the clinical trials at Gillette Children’s Hospital in St. Paul, instead of traveling to Salt Lake City five times in the next 7 months. This is a big relief, especially when it comes to winter travel!
Also, our little pumpkin took a ride in an adaptive stroller. She loved it. It is highly adjustable, allowing her to breathe comfortably and interact more easily. It folds up nicely when we need to go on the road.
Some friends of ours that have a child with SMA provided us with a back up battery...24 Volts. It is used for redundancy in data centers. It weighs 140 pounds and will be used in the mini van to run the cough assist machine if need be when we are away from the house.
Sophia used exclamations such as Wow! or No No No No! She'll say ma ma ma ma, and at times I think she says Dad-dy. Her all time favorite, however, is still Uh Oh!
She weighed in at 18 lbs 4 oz today. That's 3 and 1/2 lbs more than she weighed in early July. Her legs and her arms are becoming adorably chubby. We love her sparkling eyes and her high-pitched squeals that she gives to her mommy in the morning.
God Bless, and thanks for visiting.
Sunday, September 12, 2004 11:06 PM CDT
Hello friends and family:
Thank you for visiting Sophia's site and adding your wonderful comments.
Sophia returned from Salt Lake City in late August. The doctors were happy to meet Sophia, and commented on how healthy she is. They feel their studies will benefit her. We anticipate introducing Sophia to medication within a month or so.
More recently, Sophia returned from Madison, WI, where she was fitted for her adaptive stroller. The stroller will provide Sophia with more comfortable, socially engaging positioning. She will be able to join us at the dinner table, for example.
Also, Sophia's temporary g-tube was replaced with a "button," which is more streamlined then her temporary tube. She continues to gain weight!
Our little pumpkin continues to keep us busy, and remains the consummate charmer.
Take care and God Bless.
Wednesday, September 8, 2004 9:58 AM CDT
Fundraiser this Sunday:
Sorry for the late notice.
This Sunday, September 12, our family will be participating in the Fourth Annual 5K Walk for the Cure in St. Paul. If you would like to sponsor us on our walk, please send a check at your earliest convenience.
Make checks payable to:
Families of SMA
Mail them to:
Doug Doebbert
5104 Bedford Ave
Edina, MN 55436
If you feel your donation won't arrive here by Saturday and you would still like to contribute, e-mail me and let me know what you would like to pledge, and I will cover you for a few days.
Doug
Monday, August 30, 2004 11:57 PM CDT
The following was sent in a newsletter in late August 04
Dear Friends and Family:
Thank you so much for your love and support these last 8 months. Andrea, Sophia and I have been strengthened by your encouragement.
Sophia was diagnosed with Spinal Muscular Atrophy (SMA) in January, 2004. She was six months old at the time. SMA is a genetic recessive disorder. Both Andrea and I are carriers, but we are not affected by the condition. SMA is a genetic disorder which results in muscle weakness, and is caused by a deletion of the survival motor neuron gene. The condition typically leads to a highly compromised respiratory system. Its rate of occurance is only 1 in 6,000 births. It does not affect cognitive development. If you would care to know more about the specifics of SMA, visit www.fsma.org.
Needless to say, we were devastated. We were given little hope that Sophia would survive past two years of age. The medical resources we sought out locally were inexperienced at managing SMA, and as a result, our fear and frustrations grew. Our family, friends, and God were our daily existence.
In the midst of this immeasurable anger and sorrow, Sophia remained relentlessly happy. At the very worst, she might have been a bit overwhelmed from all of the attention she was receiving. We felt dishonest in our feigned attempts at happiness, and we tried our best not to cry in front of her. Gradually, her smiles, giggles, and grins convinced us of our mission: waste no time getting to know this bubbly cherub and savor every moment.
We slowly became involved with FSMA (Families of Spinal Muscular Atrophy), which is the largest private funding and support group for SMA. Their newsletters contain valuable information regarding current research, medical advice, and support from other families in our situation. Their website has an online chat room where we could air our thoughts. On the one hand, it was scary to look at the photos and read the stories of these children. On the other hand, it was somewhat consoling, knowing that other people shared our situation.
Our turning point came in June, when we attended the annual FSMA conference in Chicago. We met the top medical professionals in the field of SMA, who teach parents how to proactively manage the condition as best they can through various procedures and equipment. We met other children with SMA, some strong and some weak. In the end, we walked away grateful for the experience, feeling empowered to better care for Sophia.
Our first step was to acquire some important medical equipment that would strengthen Sophia’s respiratory system. She now sleeps connected to a Bi-Pap, which allows her to breathe more efficiently. Due to her restricted muscular strength, we also utilize a cough assist machine, together with chest phisiotherapy. This practice helps remove secretions from the lungs, which is normally expelled with a healthy cough. Although she is still getting used to the routine, she is an incredibly smart girl, and knows that Mommy and Daddy are only trying to help her.
After the conference, we took Sophia to Madison, WI to meet Dr. Schroth, one of the top pediatric pulmonologists specializing in SMA. Dr. Schroth advised us to proceed with the gastrointestinal tube (g-tube) surgery, that would allow us to feed her higher volumes of formula during the evening. Our little baby girl had to undergo a four hour surgery, one that presented a considerable amount of risk. God was with us, and the surgery went well. Throughout her entire stay at the hospital, Sophia was a little trooper; always in high spirits, maintaining the utmost patience, and flirting with the male doctors. Dr. Schroth and her team kept a close watch on her, and gave us invaluable instruction on critical care techniques
That brings us up to August, and our newest chapter. As I write this letter, Sophia, Andrea, and Andrea’s mother Judie have just loaded up the minivan and are heading out to Salt lake City, UT to participate in a research study for an experimental medicine. It is the first of six 2,600-mile round trip journeys that Sophia needs to make within eight months. The program will introduce Sophia to a medicine that attempts to maintain muscle strength. The doctors prefer driving to flying to avoid exposure to germs and the hassle of airline travel with special equipment.
Sophia is a happy, smart and sociable child. When something uncomfortable is introduced into her routine, she greets it with gusto and deals with it. It is amazing. Her mother and I both wish we had her courage.
Becoming so involved in the care of such a young child takes some adjusting. It is disturbing to have to watch such an innocent, helpless baby undergo strenuous therapies and a myriad of tests. I have often heard Andrea say that she would take Sophia’s condition in a heartbeat, if it were possible. I have said it too, but not as often. The morning of the surgery, we were instructed not to feed her. Our little angel could not understand why it was 11:00 a.m and she had an empty stomach. She kept looking at us, imploring to know what was happening. As parents, we all want so much to communicate with our children. In scary situations, we want to tell them that it is okay, that we will always be there for them. The most we can do, though, is to play with them, sing with them and dance with them.
Transitioning from feeling that you are on the verge of losing your child to slowly realizing that you are the parents of a disabled child has created its own path of acceptance. Just after Sophia was diagnosed, my mother told me to be prepared for our situation to turn out differently than how we were envisioning it.
She was right. Yes, the challenges are imminent. SMA greatly complicates eating, breathing and mobility. But Sophia is a strong girl and we feel very optimistic for her. She is incredibly bright and deserves to develop her potential. We anticipate the aid of some adaptive equipment that she will be able to operate on her own, such as a powerchair She will have fun showing that off to her January 05 baby sister!
Andrea has given me carte blanche to write whatever I think appropriate. My intent was to bring people closer to our world. It is impossible to relate the full impact of this challenge to people, but I will close with this thought: Sophia has become a strong leader in our family. Through her, Andrea and I have learned what patience, trust and love entail. She has solidified our understanding of commitment and brought out the best in people she meets. At the end of the day, when we look down at Sophia’s ever-curious, intensely happy face, it all feels so good! God Bless.
Wednesday, August 25, 2004 9:37 PM CDT
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