3-13-06 Megy was born at 35 weeks via c-section.

I had polyhydramnios (too much amniotic fluid) from about 6 months and went into labor at 29 weeks. This was due to a series of strokes which left her

with stunted growth of her throat muscles. She was unable to swallow in utero, or post birth. She was in the NICU for 2 weeks for FTT (Failure to thrive); she could not eat on her own.
At birth she was 5 lbs 1 oz, but dropped to 4 1/2 lbs while in the NICU. She got up to 4 lbs 10 oz with the help of an NG tube and was beginning to eat on her own via bottle, she could not nurse. I worked with a lactation consultant over the next 2 months and at that point she was barely back to 5 lbs, and made these squeaking noises when she ate. My lactation consultant suggested seeing a GI specialist, and felt so strongly about it that she set it up for the next day. The GI specialist admitted her for FTT, and they immediately put her back on the NG. An ENT specialist determined she had larynomalacia (underdeveloped larynx). They sent her home on the NG tube and she plumped right up weight wise. They actually cut back her food. At 6 months she had a PEG tube put in and at 8 months had that changed to a MIC-Key button. At 12 months we all became concerned that she wasn't moving, which up until that point we had attributed to her pre and post feeding positions for reflux. An MRI in neurology showed some scar tissue in her brain. A later MRI showed that and some abnormalities to her corpus callosum (the area between the right and left hemisphere). The Physical Medicine Doctor said she had enough of the characteristics of Cerebral Palsy to diagnosis her with Diplegia CP. That got her into PT/OT and Speech therapies. Since then, she rolled over at about 14 months, sat at about 16 months, crawled at about 20 months. She is now 23 months and is beginning to pull herself up to a standing position. She wears DAFO's (foot/ankle/calf braces). She is still on the feeding tube but getting ready to start a cup therapy in OT. She is the size and development of an 8 month old. She was diagnosed with Dubowitz at 23 months. Some of the characters that our doctor pointed out were: ptosis (droopy eyelids) wide bridge of her nose low muscle tone size to development mirroring small stature language delay feeding problems Our genetics doctor, Dr. Bartholomew, said he figures she will grow to about 4 foot, and that we could opt for growth hormones. He feels she will one day walk and talk, though both are still in the future. Megy is extremely happy. She is the most content baby I have ever met. Megy lives with Mom and Dad and 2 sisters ages 6 & 4. They don't show any signs of the syndrome. Dawn - Mom of Megy feel free to email me directly at dawnyduck@yahoo.com 8-23-08 Since my initial Post 2 years ago, Megy has had some developments. She began to walk at 30 months. She is still non-verbal, but has about 10 signs she can use effectively to communicate. She knows how to do about 10 more signs. Most of her communicating is done via cues such as she will bring a cup for something to drink or grunt. Mostly though, I just know what she needs and she goes with it. We do Speech Therapy once a week where we work on the signing. We try to positively encourage any sounds she does make, but that is not progressing very much. PT wise, she gets therapy once a week also. She walks like a drunken sailor; however she seems to have her own equilibrium. Currently she is working on throwing and riding a tryke (hand and foot pedals). Neither of which she is doing on her own yet. She can also crawl upstairs and comes down on her bottom. She likes to jump and bounce one everything, a trampoline, a bed, etc. She walks a lot on her toes or her heels. Twice our Physical Medicine Dr. has put her in braces, but they seem to do more harm than good and we go back to not using them. She follows with him about every 4 months.

OT wise she is doing well. She can lace beads and has good pincher skills. We are mostly working on feeding herself in therapy. She does OT every other week. She sees a neurodevelopmental team every 6 months. Her last MRI still showed the scar tissue and they have determined that she is missing the rear portion of her corpse callosum. Her EEG was abnormal and it was deemed that she was likely having several partial seizures a day, which caused her to space out and fall. She was started on Keppra for the seizures and things improved since then. (May 2007) Since the meds she began using the signs, falling less and seemed to be retaining things that she learned (i.e.pattycake). Her G-Tube came out in April 2008, however she is still on soft foods because she doesn't chew effectively and will still choke on some foods. She has gotten very good at drinking from a cup. We saw an endocrinologist in May 2008 because she had maintained a height of 33.5 inches for 15 months. They did a Bone age test that came back with a bone age of 2. They also tested for Pituitary Gland abnormalities, but that came back normal. Ironically, after that visit, she grew 3 inches over the next 3 months! We recently tested for B12 and Folic Acid levels, because she looks down a lot when she walks. That came back normal. Her white blood cell count was low, but the neurologist said it was nothing to be concerned about. Currently she is still the same happy little girl. She is developing at about a 2 year old level with a speech of about 9 months. 9-6-2009 Another year, another round of test results that show nothing. At this point we are pretty sure there will never be answers. But that is a whole nother can of worms! Megan is 5 years old now. She is still completely non-verbal, however her signing has increased to about 25 signs that she can use effectively. She still has the same therapy schedule as last year, and is again in a special needs Pre-K school 4-half days a week. She is still on the Keppra for the seizures. Her neurologist tried to lower her dose, but she began to regress, so we went back to original dose, and things returned to normal. Megan is about 36" in height and 35 pounds. Doctors thought she would have had

some speech by now, but does not. We have introduced her to a PECs book (picture system) which she is not taking to at all. She does not make choices. I am unsure that she can receptively associate objects. So our biggest concern over the next year will be communication, as she will be going to Kindergarten next year. PT wise, she is doing very well, jumping, throwing, etc. She can walk up and down stairs. She still will drag her toes when she walks fast. She is very inconsistent in all areas. At times she will walk completely aware of her surroundings, and other times, she will walk right off a step or into a wall. Her behaviors arent bad, but things are getting increasingly frustrating with the lack of communication. She still is not potty trained, as every effort we make she does not seem to comprehend. We did move her out of a crib and into a toddler bed, which we were concerned about because she moves so much in her sleep. She

will stand, sit, and stand on her head-all in her sleep. So we were concerned that she would sleep walk, but does seem to be fine in the big girl bed.

She is eating as a normal 5 year old. Chewing and swallowing have improved significantly. Recent Swallow Studies show penetration, but no aspiration. She loves music and TV shows with music. She loves yoga, and has taken yoga therapy. Hoping she will continue to progress over the next year, and hope that things become clearer on what schooling will be like for her. I see many IEP meetings in our near future. Also, hoping to start therapy with someone who specializes in Augmentative Communication Devices.

March 2, 2010 Guess it had not been as long as I thought since my last update! In the past 6 months, most things have stayed the same. OT is her strong suit, she receives therapy once every other week. PT and SP are still weekly. We did order her a Pentke Romich (PRC) Vantage Lite, which had been one of the hardest decisions we have had to make. We narrowed our Augmentative Communication Devices down to the PRC or the Dynovax. We initially liked the Dynovox because it seemed like quick speech, something she could use right off the bat. We could import pictures and she could use the picture to say what she wanted. We eventually opted for the PRC because it actually teaches some core language skills, word and sentence building, and we thought that in the long run- she will continue to learn with this device. Not to mention, insurance only pays for one device every 5 years, so we had to look into her future to make sure we choose something that would get her through the next 5 years. As of today, we are eagerly awaiting her PRC. Our newest challenge is where will she go to Kindergarten. I made sure her IEP stated she would have to be in a resource classroom (8 or less students), so finding the proper school is our latest challenge. Teachers will have to be trained on using the device. Moving her to the Big Bed did not end up working out, so she is back to a crib. She is still not potty trained. We still try every day, but she still does not seem to make the connection. She is becoming very indepentant, which is increasing the already high levels of frustration. Even through it all she is still extremely happy. She is up in development to about a 3 y/o.

March 27, 2012 Now it has been sometime since my last post. The past two years have been full of new challenges. Her device came the summer of 2010 and she loved it. As of today, she does not use it in her daily communication, but does work with her speech therapist at school to continue to learn on it. On that subject, she is still non-verbal. Mostly using signs and my ability to just know is how she gets her point across. She still lacks the ability to make choices, or better yet to make her choice known in a way that we understand. She does speech therapy twice a week. Once in a group and once one on one. She is beginning to make some vowel sounds, although not understood by most. But we see it as progress. OT continues to be her strong suit and she works very hard to write. She practices tracing dotted words daily and can trace her name. She can independently write the letter M. She tires easily and we can

usually only get one good name trace out of her in a sitting. Letter-wise she can identify all the letters of the capital alphabet. PT is stable. She does adaptive PE at school. She continues to drag her toes when she runs. She climbs and walks to the best of her ability. Still drunken sailor-ish, but again, she seems to find her own balance in that. She remains on medication for seizures, and only notice them about once a week or so, usually in a sleep transition time. They get worse as she outgrows her medication. Half of her face begins to twitch, the other half goes limp. This has happened once each of the last two years. An increase in meds cleared it right up. As of my last post, elementary school was on our radar. This was a very stressful time for us, because we were very content in our special needs Preschool. I was afraid that in the public school system she would become lost and overlooked. Our other option, a private school, I was afraid they would not have the financial means to provide for her (ie. Therapists). After the transition meeting, which I prepared for by researching the Public School Special Needs structure, I made a list of schools I wanted to tour. They included Public Schools, Private Schools, and the County MRDD School (Department of Mental Retardation and Developmental Disabilities). At the meeting, the school district gave me a paper and said this is your assigned school. I said I would add it to my list. We had wonderful support from her preschool, and they accompanied me on most of my school tours. We were appalled at some of the schools (including the one they were assigning us to), We fell in love with one. The County school, though a generous facility and wonderful staff, we felt, would just not let her flourish in the way we felt she could. The Private school was the only one I did alone- and I felt as though the completely humiliated both her and me, requiring us to go through kindergarten testing of things both they as I knew she was not capable of. (this was our Parish School, so they were well aware of her disabilities). That ended in a letter stating that they would be unable to educate her. The school we ultimately selected was wonderful in every way. A wonderful teacher, principal and collaboration team. Trouble was it is a half hour away and they likely would be unable to transport. But I felt that it was in her best interest to go there and If it meant I had to drive there twice a day, I would. Fortunately, it worked out, she was able to get transportation and has been in the Primary Multiple Disability Classroom since starting Kindergarten in August of 2010. We could not be happier with her progress.