My Story

 

Jensen's story (as told by her mom)

I want to share with you the story of my beautiful, amazing daughter and the difference she has made in my life ... I can't imagine where I would be ... WHO I would be had it not been for her.  I would choose this life, even with SMA, all over again. 

Jensen's Birth

My Perfect, Beautiful Princess - my heart and my soul.  I was just desperate for a girl when her father and I decided to have another baby, and throughout my pregnancy, I just KNEW Jensen was a girl - she had the most delicate little kick - not like her brother who could kick a book off my stomach!  She just felt so dainty.  I was sick the entire time I was pregnant with Jensen though - I lost weight the first 8 months and only gained 7 pounds during the last month ... when I say I was sick, BELIEVE ME, I WAS SICK!!!  I would throw up with certain smells, certain foods, you name it!  I ended up developing preeclampsia 5 weeks before my due date with Jensen, so my doctor put me in the hospital overnight on a Monday (plus, her movement had slowed down, so they wanted to monitor that, too) ... and on ultrasound, we saw that my beautiful baby was, indeed, a girl!  I was released from the hospital Tuesday and he wanted to see me back on Friday.  My blood pressure was 156/98 when I was admitted on Monday and was back to normal when I was discharged on Tuesday.  When I went back to see my doctor on Friday, everything was back just as bad as Monday.  Although Jensen was still about 4 weeks early, my doctor said that he could deliver her on his lunch hour if I wanted to go ahead and do it ... so I walked across the street from his office to the hospital, called my mom from the hospital, and told her that I was going to go ahead and have the baby within the next few hours.  I got to stay awake while I had her (unlike when I had her brother) - the anesthesiologist stayed with me since it was such short notice and no one was there with me - a very nice man.  The first obstetrician I went to when I was pregnant with Jensen I had a SERIOUS "personality conflict" with ... didn't like the man at all!!!  And since I had Jensen on a Friday by c-section I was in the hospital over the weekend ... and GUESS who was on call for my doctor???  Yep!!!  That first doctor I fired when I found out I was pregnant with Jensen and the same doctor who later ended up actually delivering Kameron (not by my choice)!  I can't escape the man. 

Jensen Elizabeth Victoria Baldwin was born on April 28, 1995 at 12:47 p.m.  She weighed 6 pounds and 11 ounces.  She was 19" long.  Jensen was the most beautiful baby girl I had ever seen ... she still is - inside and out. 

The First Few Years

The first thing I noticed immediately after Jensen was born was that she had tremors severe tremors almost like a seizure - head to toe.  It always bothered me and I always wondered why, but it was never really brought up as a serious concern by her pediatrician.  I think mostly because she never saw it quite as severely as I did.  I would notice it mostly when Jensen would just wake up from sleep or if she was really sick or really tired.  She also had a curve to her left foot - almost in the shape of an L - it bent inward right in the middle of her foot.  At several months of age, Jensen started undergoing serial castings to correct the curvature of her foot to keep it flexible.  Funny story when I was leaving the doctor's office for the first time with a very small child with a cast on her foot I was in the elevator leaving the office and a man and a woman were in the elevator with me.  I was holding Jensen and the woman said, rather snooty, "Huh - how did she break her leg?"  I said, "OH!  She didn't break her leg.  She was born with a curve to the bones in her foot, so they are putting the cast on to hold it straight."  She seemed fine with that explanation and was rather nice after that but I realized then that while Jensen had the cast on her foot/leg, we would NOT be leaving the house!  Things progressed mostly as normal.  Jensen had difficulty sitting up without falling over, but other than that, I didn't really have any major concerns. 

At 12 months of age, Jensen would hold on to things and cruise around, but she fell a lot.  At 18 months of age, she was still doing the same thing - falling a lot while she would cruise around the furniture.  Her pediatrician suggested we go back to the orthopedist who did the serial casting, so we did.  He said that she was a little delayed, but that he didn't see any problem and that she would walk when she was ready.

At 24 months of age, Jensen was still the same - cruising and falling, but never letting go.  Her pediatrician suggested that we go ahead and see a neurologist, so again, we did.  We went in and he did the initial evaluation, family history, etc., then he sent us to have an MRI of her sacral spine.  One week later, we had to go back in to have an MRI of Jensen's brain (don't know WHY they couldn't have been done at the same time, but oh well).  When we went back to see him to get the results, he said that everything was "normal" and our family history was negative for anything like muscular dystrophy (yes, he specifically mentioned "muscular dystrophy") and said she was fine!  "See you back in six months for a check-up!"  We didn't go back.

When Jensen was 3, she was the same - still cruising and falling, still not letting go to take any steps.  We had gone a few times to the Shriner's Hospital in Shreveport, Louisiana.  They fit her for AFOs and suggested we get a Kaye walker (which we did).  Jensen had a lot of difficulty with AFOs though.  She was always very, very flexible and was able to cruise around, but with the AFOs on, Jensen was unable to walk at all.  She had figured out how to walk and move without them on, but with the AFOs on, she couldn't even stand up on her own.  We decided it was most important for Jensen to stay mobile and since she was very flexible and contractures at the time weren't a concern, we took the AFOs off and let her go without them.  But since she was still not walking independently, Jensen's pediatrician suggested that we go see ANOTHER neurologist, but this time he was a friend of hers and someone she trusted to get to the bottom of what was going on.  We went to see him when Jensen was 3 years old and he knew by watching her walk what she had.  He specifically mentioned anterior horn cells in our very first meeting with him.  Unfortunately, it took another six months for testing to begin (because of insurance).  Jensen first had a nerve conduction study and then a muscle and nerve biopsy.  From there, we had the blood test to confirm SMA, which it did.  We got the phone call on December 2, 1998.  We went in for the "official" meeting with the geneticist a few weeks later.  Shortly after our initial meeting with our new neurologist, Jensen had started walking independently - no AFOs, no walker, nothing. 

Although Jensen was originally diagnosed as having type II, it was during the 2000 Families of SMA Conference in St. Louis, Missouri that I learned that since Jensen had started walking independently, she did, in fact, have type III.  It was strange hearing that.  I had come to terms with the "type II" label and life expectancy and complications usually associated with that type, but hearing "type III" made me SO happy!!!  Just hearing that at the time made me feel like Jensen was invincible - she would have a normal life expectancy and would escape so many of the problems that most type II patients have.  Thinking back now about that BOY was I wrong!!!  I have learned a lot since then and I know that NOTHING is definite and that SMA is so completely different in each and every person - you can't count on anything as a sure thing in SMA.  I think that's why I get so bothered and upset by the "types" issue.  But at the time, I was on cloud nine and was so happy to hear that "type III".

Respiratory-wise, however, Jensen has always had difficulty.  She developed pneumonia pretty early on and would usually get it once or twice a year.  So even though Jensen had been "upgraded" to a type III, she had the same respiratory difficulties as the stronger type II kids.

During that conference in 2000, we were fortunate enough to have a one-on-one private session with Dr. John Bach (I just love that man!).  He looked at Jensen, listened to her chest, etc.  He sent us a letter for the cough assist.  I took it in to our pediatrician and she got it to the DME company.  Unfortunately, they had NO clue what it was, how it worked, or what it did and had NO idea how to even operate it once it came in.  When I finally convinced them that it would NOT collapse Jensen's lungs, they agreed to get one for us.  Keep in mind, this was in 2000 in Tulsa, Oklahoma.  This was all new to them!  When we went to pick it up, however, we were handed a suction machine.  WRONG!  I told them it was the wrong piece of equipment, so several weeks later I got a call that our cough assist was coming in and FORTUNATELY, the rep was on his way to Oklahoma City with one and was bringing ours by their office himself to show them how to use it.  The next day they brought it out to us and we still have the same machine to this very day.  It's very old, very big, bulky, and heavy but it still works like a charm! 

Since Jensen's older brother has asthma, we were fortunate enough to already have a nebulizer at home.  Next, we were able to add the Vest to our home equipment.  And finally, we got a pulse oximeter.  Last year, however, I returned the pulse ox to our DME company, because we were renting it at a cost of $641.00 per month and I just didn't see the point!  We used it only for spot checking, and I could buy one outright much smaller and mobile for MUCH less. 

Several years ago after many, many bouts of pneumonia, we decided to give Tolerex a try to give Jensen a little boost during the late fall/winter/early spring months.  Thankfully, it has been since February of 2004 since Jensen has had pneumonia!  She has had bronchitis twice, a few colds, and Strep a time or two, but not pneumonia ** knock on wood**  We have since been fortunate enough to receive Tolerex from our friends so Jensen can continue on it during the colder winter months and we hope to soon start using Tolerex year-round.

On April 25, 2003, Jensen got her first powerchair!  It wasn't easy - we had to fight for it, but that's fine, because it gave me some great experience and learning what to say and how to say it to end up with positive results.  Jensen's first chair was a Permobil Playman Robo.  It was a fantastic chair!!!  It gave her freedom, independence, and mobility at school that she had not had before.  She had been using a manual chair that people had to push for her to get her around the school.  Jensen was walking independently at home, so her powerchair was used for school and shopping - any place we needed to go long distances.  Jensen always walked around the classroom on her own without a walker or wheelchair - just holding on to desks and counters.

In August of 2003, Jensen broke her arm.  She was at her Mimi's house spending the night and decided to be wild and crazy and stand up on the arm of a recliner trying to get her toy dog off of the ceiling fan!  Jensen tumbled down and broke her arm.  It broke very high up just below the head of her humerus bone on her right arm.  It was too high to cast it and several days had gone by before I took her to her pediatrician (BAD mommy I kept telling her, "If you can move it, it isn't broken!" WRONG!), so she just had to wear a sling for a few weeks. 

On February 25, 2005, Jensen had a wheelchair accident and had a fracture of her left tibia.  Jensen was outside playing with her brother and friends in her powerchair.  She was in her powerchair going really, REALLY fast and hit a bump hidden in the grass.  I had been preaching seatbelt use since Jensen got her chair, but she wouldn't ever listen.  When she hit the bump in the grass, she was thrown out of the chair and hit the ground with her leg first, then the powerchair rolled over her leg with the remaining momentum.  Her chair ended up flipping over on top of her after it hit that bump and went over her leg, but fortunately our neighbors were moving and saw what had happened.  They ran over and lifted the chair off of her.  It's truly a miracle that she only fractured her leg!!!  Kameron ran over to my office window crying and barely able to talk, so I ran outside and it's almost as if it happened in slow motion (and I can still see it in my mind like it was yesterday) as I ran around the corner, I saw Jensen lying on the ground and people all around her.  She was so still, crying, and said, "I think I broke my leg."  I told her not to move ANYTHING!  I asked her which leg and gently pulled off her shoe and had her wiggle her toes, which she could do, so I had her wiggle her fingers eventually I felt comfortable moving her and just held her.  We tried standing her up on her leg and she felt immediate pain.  At the time, we thought it was the worst possible thing to happen.  We didn't go immediately to the emergency room - we waited until the next day.  I don't know why really just that part of me that likes to live in denial I guess - hoping it wasn't really as bad as it was.  We went to the emergency room the next day around 11:00 a.m.  We had the x-rays done and I thought they looked perfect!  But very, very faintly you could see the little crack in her bone.  The emergency room doctor said Jensen would be unable to walk or put any weight on her leg for at least eight weeks.  Jensen and I both started crying - the doctor (clueless as she was) couldn't understand why we were so upset.  Even after explaining the situation and how Jensen NEEDED to be up on her feet, she still didn't get it.  We were fortunate enough to get in to see a wonderful orthopedist in Kansas City who understood the situation and put Jensen in an air cast.  Unfortunately, the nurse who wrapped Jensen's foot in the emergency room bunched up the gauze and caused a pressure sore on Jensen's heel, so Jensen wasn't able to wear a walking cast - otherwise, she could have been up walking THAT DAY!  We were so thankful though that it wasn't as bad as we had thought and the whole situation could have ended much, much worse.  But at that point, Jensen became very timid and afraid to walk on that leg (strangely enough, her left leg is her stronger leg now).  

Jensen has very slowly lost her ability to walk independently.  For a young girl losing that independence has been very difficult.  Along with losing her ability to walk, she has started having many other problems pop up all of those problems that I thought we would never have to worry about when I heard "type III" back in 2000.  First we started noticing contractures in her knees and hips.  And then scoliosis.  Her scoliosis came on VERY quickly!  I was clueless actually and really went into Jensen's appointment with the orthopedist not thinking a single thing would happen other than some x-rays.  It was January 2, 2006.  We went to Oklahoma City because we had moved to Lawton and there are basically NO pediatric specialists in the entire town!  So we had the x-rays and I had to help Jensen get her shirt off and get the hospital gown on.  I was absolutely shocked when I looked at her back.  Jensen has always been independent in 99% of everything she does - even after losing her ability to "walk".  She makes her own food, pours her own drinks, takes her own showers, goes to the restroom on her own, brushes her own teeth you get the point.  But her back was shocking.  When the orthopedist came in, he said, "Well, she has a 35 curve and at this point we should talk about having surgery this summer."  I think I tuned everything else out at that point and had to just focus on not crying.  He didn't look at her back didn't try to move her or have her lean forward or to the side or correct the curve didn't ask how her breathing was or what her pulmonary function tests showed (which at the time we had not had any done), no kyphosis, no lordosis.  Just a very automatic response to a very flexible 35 curve.  Surgery.  He wanted to fuse her entire spine and (I can't remember the exact words, but ) basically tether her pelvis to her spine.  I asked him if she would be able to walk on her knees afterwards (which she does still do and very well, I might add) or crawl up the stairs and he said he really didn't think she would be able to, but you never know!  That wasn't a risk I was comfortable taking.  So I held back the tears just as long as I could then when we were leaving, I just lost it.  It took the 90-minute drive home for me to calm down, regroup, and do what I needed to do - get advice from the experts my SMA moms and friends.  Thank goodness I did my research.  We went back in July of 2006 to have x-rays after 6 months of wearing a soft TLSO (which I asked for - her orthopedist didn't see the point and didn't think it would help).  Her curve had improved from 35 to 20!  Her doctor said, "WOW!  I'm glad we decided not to have that surgery this summer!"  WE???  What?  No, I'M glad I decided not to LET him do surgery!  Unfortunately, Jensen has been very lax about wearing her brace since last July, and when we went to get x-rays today (06-17-08), her curve is now at 40.  We're going back to check in December and hopefully with wearing her brace more she can improve that curve again.  And of course, he is talking about surgery again.

School

School has been full of ups and downs for us.  Jensen started preschool in the elementary school about 2 blocks from our house.  She was in the developmentally delayed preschool program.  She was in with I believe 7 other students.  Her teacher was incredible!!!  For kindergarten, Jensen was transitioned into a regular class and did fantastic.  She was even in Daisies (Girl Scouts), then Brownies!  Jensen has always been very shy and quiet - very modest, never wanting to draw attention to herself.  She fell once in her kindergarten class and she crawled to her spot in the floor where the kids were going to sit.  A boy said, "Only babies crawl!"  Jensen very matter-of-factly said, "I am NOT a baby!", crawled to her spot, and sat.  I was VERY proud how she stood up for herself.

Transitioning to 1st grade would prove to be our first major battle.  Special Services decided that it would be "in Jensen's best interest" to transfer to their "special school" basically where they transfer all of the disabled (mentally and physically) students in the district.  I didn't understand why - still don't understand why they do such a thing!  Jensen was fully capable of keeping up mentally with her peers.  She didn't need a nap in the afternoon or need assistance going to the restroom or have any emotional or mental concerns.  It was a very long, very emotional battle where I ended up contacting an attorney who dealt with issues regarding IEPs.  The IEP meeting at the end of Jensen's kindergarten year was a room full of people - most of whom had no idea who Jensen even was.  I asked to record the meeting and you would have thought my head had fallen off or something from the looks I got!  They insisted that THEY would record the meeting for me so we could both have a copy.  That was fine with me.  So we had our meeting and it was decided after much debate that Jensen could, in fact, remain at her home school and when they went to get the tape out of the machine, wouldn't you know it, it had been on pause the entire time and the tape was blank.  In the end though, it worked out beautifully!  The school spent the summer making incredible modifications for Jensen - a nice big bathroom stall for her, sink and soap dispensers lower, ramps into the music building it was more than I had ever expected from a school district that was so against Jensen attending a "regular" school.  Or then again, maybe it was because I let it slip to a few faculty that I had contacted an attorney.  Nevertheless, we got what we wanted.

We ended up moving to North Kansas City, Missouri in February of 2004 in the middle of her 3rd grade year.  Jensen had spent the entire month of December out of school because of pneumonia.  Unfortunately, we were never offered any homebound assistance or anything - just having her teacher bring over Jensen's work a time or two for us to work on at home.  Jensen fell behind during that time in reading and math.  When we moved to Kansas City, her school turned out to be amazing!  Jensen was put in a classroom that had another child who required an assistant, so they both shared her.  She would help Jensen with everything she needed and take her down to the nurse's office twice a day to use the private, accessible restroom.  It was such a blessing knowing how well Jensen was being taken care of.  She was such a wonderful lady - it was heartbreaking when we left.  I wish we could have packed her up and taken her with us.

In May of 2005 the last day of Jensen's 4th grade year, we moved from Kansas City to Lawton, Oklahoma.  At first, the school was ok - nothing too horrible.  Jensen was still very unsure about walking in the classroom because of her broken leg, although it had healed long before school started in August.  When we did finally bring up the issue of walking during the 5th grade (with a walker, because Jensen had mostly lost her ability to walk independently), the school insisted that we get an evaluation from the school's physical therapist.  Jensen was developing contractures in her hips and knees because of sitting all day at school and not being able to stretch.  The physical therapist covered multiple schools - the only one they all had and shared.  She said that they would not allow Jensen to walk even with her walker unless she wore AFOs because her ankles needed the stability.  I explained to her time and time again that first, Jensen was unable to walk with AFOs.  Second, the LAST thing I was worried about if Jensen fell was her ankles (I was worried about her busting her head).  And third, if Jensen had to wear AFOs, it would be a guarantee she would fall and she WOULD hurt herself, so it would be pointless to have her attempt to try to walk that way.  The PT was standing firm to "no walking".  And I stood firm to no AFOs.  So throughout the 5th grade, Jensen sat in her powerchair - pulled up to her desk and never got out of it.  However, when it was time to use the restroom, they expected her to go by herself into the restroom (after sitting all day, unable to straighten her legs) and do everything in there on her own.  I called time after time to their Special Services office and voiced my concern that Jensen HAD to have help in the restroom if they weren't willing to let her stretch her legs and straighten out, but nothing was ever done.  They did allow one little girl to accompany Jensen to open the restroom door for her, and believe it or not, they had the nerve to say Jensen only needed the friend to go with her to "keep her company" and Jensen didn't really NEED help opening the door while she rode in her powerchair leaning forward to push open the door or grab the handle and pull it backwards while in her powerchair to exit the restroom.  They really didn't have any clue whatsoever.  About anything.  In our final IEP in the 5th grade, it lasted 90 minutes and absolutely nothing was resolved or accomplished.  I voiced my concerns again about the restroom issue (about how she would have to put her hands on the toilet seat to transfer), and their response was, "We can lower the soap dispenser."  As difficult as it was, we decided to begin home schooling Jensen in the 6th grade.  I lost all faith and trust in the school system.  I sent them a letter explaining my decision and they didn't put up a fight.  I think it might have been a relief for them actually!  I was just thankful to not have to deal with it anymore.  They relied on the opinion of one therapist because she was an "expert" but she was clueless when it came to SMA. 

We have since moved back to my hometown of Sapulpa, Oklahoma in February (2008).  Jensen's brothers started back to public school, and Jensen and I have continued home schooling.  I'm very happy with how Jensen has done with our home schooling experience in the last 2 years.  She has progressed FAR beyond where she was with reading, grammar, spelling, and vocabulary.  I'm also very, very happy with how she has done in math.  I do worry about the socialization aspect and that was the only concern when I first thought about home schooling.  Jensen is very shy - not outgoing, not loud, never ever wanting to stand out in the crowd.  The first year I would say was definitely the most difficult.  She missed her friends and I seriously questioned if I had done the right thing.  And then she found MySpace.  She started out just playing around a little (it's private - and I watch her very closely).  She started finding things that SHE liked!  She started finding friends her age - a few a little younger, a few a little older - who liked the same things she did.  And it grew and grew and GREW from there!  She has met so many people and is SO talkative and energetic and outgoing.  In person, she is still very much a quiet, shy, reserved young lady, but online she is very outspoken and very sure of herself.  She is very comfortable with who she is.  She is always happy (unlike what I was seeing in public school - so much little girl drama!!!  Every day was a different problem with this girl or that girl).  The great thing we've found with home schooling is that we can pick and choose what Jensen wants to learn.  She has learned about computers and web design.  Photography.  She did a report on the Oklahoma City bombing.  And fashion - Jensen wants to be a fashion designer someday.  So tomorrow she is going to begin a two-week summer class at a School of Fashion Design in Tulsa (06/18/08)!  I don't know who is more excited about it - Jensen or me!!!  We're going to keep home schooling through the 8th grade, but I'm going to begin talking to our local public school about Jensen and how we can made "regular" school work for her in the 9th grade when the entire school district combines into one.  I'm letting Jensen run the show though.  She wants to try to go back to regular school in the 9th grade, so that's what we're shooting for.  And if she changes her mind, we'll just keep doing what we're doing.

Jensen she is my very first thought every morning and my very last thought when I drift off to sleep.  We're quite the team, the two of us.  I have become so attune to her ... I think sometimes I know her better than she knows herself!  She can be such a "stubborn" girl ... sometimes she won't take no for an answer - she knows what she wants and she'll get it!  But if it weren't for that very spirit, she would have never walked.  She was determined to do it, and she did!  I have no doubt that she is going to go on and be a very famous fashion designer someday she's going to do some great things with her life.  Aaahhhh, that girl she is the light of my life ... she is my very heart and soul.

So that's Jensen's story my life with Jensen so far.  You know, SMA is frustrating and disgusting and I despise it like nothing else in the world - beyond words!!!  But it has been a part of our lives for 13 years now and I rarely give it a second thought unless we run into an obstacle (courtesy of SMA) or we hear of a friend struggling with SMA or even worse, we have lost another friend to it but this life, SMA and all, it's our "normal".  I have a fabulous life that I appreciate so much more because I know I can't take the little things for granted anymore and it all started with my Perfect, Pretty, Pretty Princess.

(Written for Jensen's 13th birthday this year - 04-28-08)

My Pretty, Pretty Princess is 13 years old today. 

I can't believe it has been 13 years since My Jens was born.  My Sweet Little Angel Girl.  She was (and still is) so tiny - so beautiful so perfect.  I knew she would change my life forever.  At the time though, I didn't realize exactly how MUCH she would change my life and how much better my world would be because of her. 

Over the years, I have had a front row seat to all of her "firsts" and her ever-changing life. 

Her first foods, her first words, her first steps, her first day of school, her first friends

Her singing, her drawing, and all of her many designs. 

Her fights with her brothers and her fights with her friends. 

Her former loves (Elvis, Tim McGraw, and Toby Keith) and her current loves (Nick, Joe, and Kevin Jonas). 

Her highs and lows.  Her ups and downs. 

Her falls and bumps and bruises never ever wanting to do her treatments or wear any of her braces (the ones on her teeth fortunately she can't take off herself). 

All of her daredevil moves!

This concert and that concert. 

Never wanting to read anything but her magazines! 

Her massive wardrobe (and still growing) and her love of shoes. 

Her make-up and her music. 

Her iPod and her cell phone. 

MySpace and HER space. 

Chocolate milk to cappuccino. 

Chocolate chocolate chocolate.  NEVER EVER spaghetti!!! 

Pink to NEVER EVER AGAIN pink (only black). 

From Annie to Sweeny Todd. 

From blond highlights to "Mom, it's too red," to "Nope, still not dark enough!" 

The younger years of wanting to wear dresses every single day to never wanting to own another dress again and finally coming back around again to wanting to wear dresses every now and then.  

Jensen Elizabeth Victoria, you are my very best friend.  You are my heart and soul.  You make me laugh you make me smile you make me proud to be your mommy.  You bring so much happiness and joy into my life.  I thank my lucky stars each and every day that God gave me you that I was chosen to be part of your life.  Your first day as a teenager a new chapter of your life I'm glad I've still got my front row seat for all of your new adventures!  I love you more than you will ever, ever know, Princess.

Your forever-grateful Mommy