Our daughter, Melissa Leigh Stagni reached a milestone this year – she graduated from Wayzata High School on June 5, 2007.  This is a remarkable feat for a kid whose ammonia was near 2,000 when she was in a coma at 4 days of age!  It is a miracle when we think of the many times we rushed her to the hospital to combat metabolic decompensation brought on by something as simple as a common cold.

Time flies by … the last update published on Melissa was when she was 11 years old, entering the 5th grade.  In this update we will try to cover the last seven busy years!

Until the 5th grade, Melissa was fed through her NG tube during the night while sleeping.  Her desire to spend the night at friends’ got us to gradually wean her off night feeds to a daytime schedule.  She now receives four bolus of her special formula each day.  Her formula still consists of Propimix-2, Prophree, 2% milk, water, 2 tubs of yogurt (18 grams of protein) and 1 jar of fruit baby food…mixed with water to make 1800 cc of formula each day. 

Melissa has been administering her own NG tube since was little and continues to do this four times per day.  She has had no medical issues using her NG tube, so we leave well enough alone.  When she was 16 we started using the new Vitaflo Express PA/MMA product.  She did not want to do her bolus at school any longer because she was missing social time with her friends while she was in the nurse’s office to doing her bolus feeds. 

Now she drinks the Vitaflo PA/MMA formula during lunch and uses the Tropical Punch flavoring.  She likes that her friends participate in preparing her lunch when they ‘shake up’ the cup for her.  For those who aren’t familiar with Vitaflo, it comes in small packages and is an amino-restricted formula with about 18 grams of protein, but little calories.  Melissa still requires high calories in her daily diet, so supplements the Vitaflo with three bolus of her formula. 

During the past 2-3 years Melissa has also had an enormous increase in her oral intake of solid foods.  She is eating popcorn shrimp (not on a daily basis), mashed potatoes, pizza, hot dogs.  We are delighted that she’s trying all sorts of new things.  She took several cooking classes in school, which was a good motivator – in addition to her teachers asking her to taste new foods.  Since her food intake is minimal, we do not routinely monitor the protein intake of these items.  There was one instance where she ate two hotdogs, and threw up shortly after that….so I had to remind her that she should limit herself to one hot dog!

Melissa still takes 45cc of Carnitine (Carnitor® by Sigma Tau, not the generic form) each day.  We mix 15cc in three of her daily bolus.  This is a high dosage which causes her to deal with persistent body odor caused by the Carnitor.  But we have decided to accept the challenge because two years ago she was diagnosed with Cardiomyopathy.  She was put on Cozzar to lower her blood pressure and we increased her Carnitine in an effort to help build more strength into her heart muscle.  Her annual heart re-check showed marked improvement, so we are sticking with this treatment plan.

In my last article I mentioned about the problem Melissa has had with her teeth.  We switched to another dentist and decided to have her teeth cleaned monthly, because of the high level of plaque she develops.  We then decided it was time to try braces on Melissa.  When she was 15 we went to an oral surgeon and had two upper teeth removed in preparation for braces.  It was a scary ordeal, since the surgery done was in the oral surgeon’s office.  She did great and started wearing the braces.  She had difficulty keeping them cleaned and her orthodontist felt that they should come off after only wearing them one year.  Her teeth straighten considerably.  While they are not 'perfect', the look great (as you can see from her picture above).

Melissa has now 'become a woman' with the onset of her menstrual cycle.  Melissa has been able to successfully handle the related hygiene tasks and has not had any associated health issues.  A related area that we have yet to address is birth control.  We know it is something we will have to face in the future – but, I rather not think about that right now!

And speaking of decisions, when Melissa turned 18 last November, we went to court and were granted Guardianship for her.  This is important because she is now an adult and without this legal authority, we faced the risk of not being able to direct her continuing medical care (among other things).  Now we make decisions about her life and care together as a team.  Melissa has also started receiving Social Security SSI Supplemental Income payments.  This is important because she can now contribute financially to her own support.

As you can see from looking at her graduation picture, she has earned her ‘letter’ from the high school athletic department.  We are quite fortunate because Minnesota is the only State that has an ‘adapted athletics’ sports program.  This program is divided into two leagues – PI (physically impaired) and CI (cognitively impaired - for students with an IQ below 70.)  Melissa qualified for either, and chose to participate in the more athletically challenging CI program.  Melissa played soccer, floor hockey, softball and bowling.  She was the captain of her team in each sport.  She was the starting pitcher on the softball team and had many strike-outs to her credit.  And she was part of the bowling team that won the State Championship her Junior year.  Through her participation in these varsity sports, Melissa learned valuable skills in good sportsmanship and teamwork.  She also became widely recognized by other kids in her school, which has over 3,000 students!

In addition to her high school sports, Melissa has been a regular participant in Special Olympics since she was 8 years old.  She participates in gymnastics, golf, basketball and bowling…and has earned numerous medals that reflect her dedication and hard work!

As I am sure you can tell we are very proud of the achievements that Melissa has gained over these years.  She is a leader and role model among her peers.  She has overcome the many obstacles put before her as a result of her Propionic Acidemia and has become a great young woman.  A woman that we admire and love very much. 

I would like to acknowledge and thank her metabolic physician, Dr. Susan Berry and dietician, Dorthey Markowitz at the University of Minnesota.  Dorthey has been Melissa's dietician for the past 18 years!  We really could not got Melissa to this point without the two of you and we appreciate everything you have done for Melissa (and us)!

Lee and Kathy Stagni

13210 35th Avenue North

Plymouth, MN  55441

763-559-1797

leekatmn@aol.com

oaanews@aol.com

Click here to read the last article written about Melissa for the OAA Newsletter

Melissa Stagni, Age 11