| On May 20, 1999 Maia Ruth Cooper was born full-term at 5 lbs. 12 � oz. and 17 � in. She struggled to nurse in the hospital and was �a sleepy baby�, but this did not concern us or the doctor. At 10 days I woke up to feed Maia and she wouldn�t wake up. I tried changing her diaper which usually worked, but she didn�t even flinch. We rushed to the hospital. We had seen the doctor earlier that day for her cough, but x-rays and oxygen levels were normal. At the ER they immediately called a Code Blue and began mouth to mouth resuscitation. Her lungs which were clear earlier were now almost completely filled with fluid. She was lifeflighted to Children�s Hospital in Omaha. She spent 3 days in isolated ICU. Her tests results showed that she had whooping cough. After ICU she spent 7 more days in the hospital and struggled to thrive. The doctor put her on steroids to help her gain weight. I had started to pump milk when I arrived at the hospital and struggled to keep up. We had to supplement with formula 1 or 2 days. She attempted to nurse a couple of times, but she was having a hard time breathing and nursing, so the doctors said we need to use a bottle for awhile. Afterwards she would drink from a bottle and I would gradually begin to nurse her again. She only received breast milk and would eventually refuse to drink from a bottle. I nursed her for 22 months. She was a late starter for solids and we did not push her. She was never real interested in meat and never ate cheese unless it was hidden in her food. We had a hard time getting her to drink anything in a cup. She was used to nursing. Eventually she began drinking from a sippy cup, but never would drink more than a couple sips of milk. Meal time was always a little difficult. She was a picky eater eating mainly fruits. Up until she was 3, we let her eat mostly what she wanted that was healthy. After age 3 we attempted to get her to eat what we were eating. It was a hard battle. From age 4 � until now (almost 6), she has tried many more things. We were confused though that she would like something like lasagna for a few times and then would refuse to eat it. Maia was a little bit behind in developmental milestones as an infant/toddler. We were told that kids develop at different rates and were not real concerned. She was small in size and that made some things difficult. At around 1 � Maia began having episodes of vomiting and not being able to stop. We would end up at the ER and an UTI would be the diagnosis. Then at 2 � she ended up in the hospital very dehydrated and so lethargic that she wouldn�t talk. Again the diagnosis was a UTI. Our doctor referred us to a pediatric urologist at the Penn State Hospital. (We were living in Pennsylvania at the time.) We were told she had renal reflux which some kids grow out of, but others need surgery. She was put on an antibiotic. We were told to seek medical attention whenever she got sick and to come back in 1 year to retest. Shortly before the retest, she had an episode of throwing up. We went to the ER and were told it was another UTI. They treated it and we went back to the urologist. The urologist explained that we should probably do the surgery to correct the reflux, but then checked her urine and told us that she had not had a UTI. We decided to wait and do the exam to determine whether the reflux had corrected itself before doing any surgery. We are glad we did, the tests showed the reflux had corrected itself. Little did we know that there was more to look at than the reflux. At the same time we were referred to the urologist, we got a referral to a dermatologist. Maia�s hair was very short in the back and it seemed to break off. We were told she was pulling out her hair and rubbing it off. I questioned this diagnosis and asked if there was anything we could do- vitamins, diet change, etc. The answer was no and that she should grow out of it. She began a preschool/daycare program at age 3 years 3 months. We were concerned that she was not yet potty trained. The program was really supportive and worked with us. It didn�t seem like she was ready, because she still struggled to dress herself. At 3 � years old, we considered her potty trained although she would have a number of accidents over the next 2 years. From age 4 to 5, Maia was healthy! When we went to her 5 year check up (May 2004), we realized that Maia hadn�t seen him for about a year. We noted that we were still concerned that her hair was still breaking off and he suggested having it looked at again. We were moving from Gettysburg, PA to Strawberry Point, IA so we put it on hold. In June we moved and prepared for Maia to enter kindergarten. Due to the move, she did not participate in kindergarten round-up. We knew that she was behind her peers. She was not drawing recognizable pictures or any letters and could not use scissors very well. We figured that kids develop at their own pace, her broken arm had slowed her down, and kindergarten would work on these things. She started kindergarten in August (2004). After the second day of school, we were called in and advised to move her into a junior kindergarten program (developed for kids with late birthdays who need an extra year before kindergarten.) We didn�t realize how far behind she was. We moved her to junior kindergarten which meets full days every other day. We had her evaluated by Area Education Agency (AEA). She showed both fine and gross motor delays. In October she started working with an Occupational Therapist (OT) and began to show improvements. In December 2004, she had a case of impetigo and while at the doctor�s office we expressed our concern about her hair growth. (This was the first time Maia had been in to our new family doctor�s office.) In February 2005, the dermatologist at Iowa City Hospitals and Clinics diagnosed her hair as trichorrhexis nodosa. Again we were told there was nothing we could do about her hair growth. They did mention that this disorder can be a side effect from another disorder that involves mental retardation. We began to ask questions. My nephew had been diagnosed at birth with a birth disorder that involved hair growth problems and mental retardation. (biotinidase deficiency) Maia had already been tested for it, but could it be something else? We noted her developmental delays. They referred us to metabolic specialist. In March 2005, we had her first IEP. We were excited by the progress she had made. We decided to keep her working with OT and to add some Physical Therapy (PT). Our concern still remained that she would have these spacey moments and had a hard time getting from A to C with directions. We had our appointment with the metabolic specialist on Monday, March 28, and they called us back on Thursday to request an appointment on Friday. Friday, April 1, 2005 Maia was diagnosed with ASA. She has a milder form of the disorder. She is now on a 18 gram/day protein diet and takes 7 grams/day of arginine along with a multi-vitamin and calcium chews. It has only been one week, but we and the school staff already see a difference. She is more, more energetic! She is singing verses of songs we never heard her sing before. She is trying new things. We thank God that we now have some answers and can take action. We are told her hair should now grow and Maia is looking forward to a pony tail! |
| Maia Ruth Cooper |
| Maia's Information as of April 2005 |
| Contact Person: Jason or Amy Cooper Email: [email protected] Birthday: May 20, 1999 Home: Strawberry Point, Iowa Age at Diagnosis: 5 years, 10 months Siblings: Jensen (8/2/04), unaffected Protein Allowance: 18 grams per day Weight: 35 pounds Meds: Arginine, Multivitamin, Calcium Developmental Status: Fine & Gross motor skills delayed about 1 year |
 |
|
 |