*Medical Information*

Although there is no cure for SMA we do what we feel works best for Lily and for her needs.  I feel what I do is important for Lily's health and well being and quality of life but I in no way intend to have other people use this medically for their child.  Please consult your physician before doing anything like this for your child.  I do not take responsibility for any medical situations that may arise.


Lily is G-tube fed so we have her on a very specific diet which we limit the amount of calories and protein.  We try to maintain a healthy balance for her and it was designed for her.  I do not print the diet because I feel each child has individual and specific needs.  You can contact me for information about her diet if you would like and I would be glad to share my information with you.  The diet Lily is on is basically the same as some of the other diets our children are on consisting of Amino Acid's.   In her formula these are some of the things we add..
1 1/2 packets of Tolerex (double diluted or more)
Acidophilus (we use Natures Way Primadophilus for Children)
Additional Amino Acid's
Juice (for calories..I use Juicey Juice usually in the Apple)
Baby food (she gets up to 4 jars of the stage 1 of Gerber baby food)

*a note about the Tolerex.  We started Lily out on Pediatric Vivonex and we were satisfied with that but there came a time when she was having some problems and I wanted to try her on the Tolerex so I switched her to it.  I did not slowly change over we did it in one day's time and she handled it very well but some kids cannot tolerate Tolerex at all or only in small amounts.  I am very satisfied with our switch and have seem some very positive changes that we are not sure if it is the Tolerex but we suspect it is.  She seems stronger and even stronger respiratory wise as well.

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    This is Lily's feeding Pump                     This is Lily's G-tube and mickey button

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                                           This is the Mickey Button Box




Lily uses a Bipap at least 13-14 hours a day to give her a rest with her breathing. We have her setting at 20 IPAP and 2 EPAP.  She sleeps on it at night and during her naps through the day and she is in no way dependant on it at all.  During the day when off of it we monitor her sats and she generally stays between 98-100%.  If we feel it is needed we put her on it for additional hours through the day as well.  The bipap machine not only gives her a rest but it also expands her lungs as well for normal lung growth.  We feel this has helped her to stay healthy and strong.
We also use the Cough Assist machine (or cough-a-lator, InExSuffulator, Cough Machine) by J. Emerson.  I feel this is one of the most important machines we have.  Not only does it help to keep her lungs clear by coughing for her but it also helps to expand her lungs to help maintain normal lung growth.  This is a machine that I cannot imagine being without.  We generally cough her 3 times a day using a series of 3 sessions with 5 coughs in each session.  (Meaning we do 5 coughs, suction, break, then another session of 5 coughs, suction, break, then another session of 5 coughs, suction, break for a total of 3 sessions).  We use pressures of 40+ and 40- on the machine.    

In addition to those machines we have a suction machine to remove airway secretions, and a Pulse Oximeter to measure the amount of oxygen in her blood and her heartrate.  We keep the pulse oximeter  on her all day except when taking a bath.



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The Cough Assist


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The BiPap and Humidifer Set up


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                      Lily's Pulse Oximeter


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                   Lily's Suction Machine





**When Lily turned 3 she was to old for Early Intervention anymore but I will keep her information up because it may help someone early on in their diagnosis.**

All of Lily's Therapy other than PT now comes from the school system which has been a GREAT group to work with.  Lily now has a Preschool Teacher who comes 2 times a week through the school year (out for the summer), a SLP (Speech) Therapist who comes once a week and works along side of the teacher, a PT through the school system who comes once a month to help with postioning needs and assist the teacher, an OT who comes once a month to assist with fine motor issues and works along with the teacher as well, and an AT (Assistive Technology) Therapist who comes once a month to assist with various switches and helps come up with idea's on how to make things work as well as helping Lily with her computer and she works along with the teacher as well.

The Team has been wonderful and made the transition from Early Intervention to the Public School system a very smooth transition.  Lily is in the Home Bound Program meaning 2 times a week they come to our home and work with Lily to limit her exposure to germs and virus' to keep her healthy.  This next school year we are going to try and visit the actual school and preschool class that Lily has been assigned at least in the early school year and late school year so she can have interaction with her own peers.   Again, our school system has been so wonderful and helpful and we LOVE our team.   Lily will have a few new faces next year but will also have some of the same people as well.

Lily's first school year went very well, and after every session an email is sent out to all on Lily's team including myself on what works, what doesn't work, what Lily seems to excel at (art for sure!) and what she doesn't seem to be getting or needs help with.  At the end of our first school year in April we had our IEP Meeting to set a new set of goals for the following school year such as learning shapes, colors, etc.   Lily tries hard, most of the time, and there are things she is VERY good at such as art time and other things she doesn't particularly care for such as book time but much of the school time is successful.  Lily works with various tools to help her communicate such as a "Clock Communicator" where she can make choices and she does eye gaze things as well.  The goal is to eventually progress up to a Dynavox to help her 'speak' in the real world.  Lily has many days she enjoys school and the interaction with her 'teachers' and other days where her mind wonders and she doesn't want to do any of it, but of course she was only 3 as well!  I know Lily is a success and I also know how stubborn she is as well.  My goal is to do school throughout the summer to keep her mind stimulated for the next school year.

Lily also has PT outside of school, once a month with Miss Beth still.   Again, she assists in helping me to keep contractures to a minimum and help me with area's that Lily is 'tight' and needs some extra help.  Beth is also there to help me with any needs that arise such as AFO's (ankle foot orthotics), chairs, etc. 

Early Intervention (First Steps) from Age Birth - 3

Lily has a varity of Therapists that come in and out through the week.  All of them are part of "Lily's team" and they are all very special and have taken Lily into their hearts. 

Physical Therapy (PT) is 2 times a month with Miss Beth.  When Lily was smaller she came once a week but I am comfortable with doing Lily's stretches and ROM (Range of Motion) so we have cut it back to every other week.  Basically Beth is here to make sure that we are keeping contractures to a minimum and to make sure there are no problems and of course is available for any questions that I might have.

Speech Therapy (SLP) is once a week with Miss Karen.  Karen works on trying to get her to vocalize as much as possible and to massage the muscles in her face to make sure we are keeping as much mouth movement as possible.  It is important to keep her moving her mouth as much as she can since she takes no food by mouth.  We keep her jaws from getting contracted and work on different oral exercises.  While Lily does not talk she does vocalize alot and we want to keep that going. 

Developmental Interventionist (DI) is once a week with Miss Rhonda.   This is probably Lily's most "fun" therapist because basically she is there to play with Lily.  They spend time playing with different toys and Rhonda spends time trying different "sensory" things with Lily.  She does lots of fun things with Lily like read books, play with dolls, and just help her be as independent as much as possible.

Assistive Technology (AT) is maybe once a month with Miss Robin.   Robin is key in trying to figure out the best way to make technology work for Lily.   She helps us to order different pieces of equiptment such as switches, adaptive toys, and computer software to help Lily with playtime and the soon to be preschool things! 

We have all of our Therapists through our Early Intervention called First Steps.   Once she turns 3 we will be in school system and things will probably change at that time.