"She looks like an angel," I said to my husband one morning. Hair freshly washed, hanging just below her shoulders, a blue dress which matched her eyes; she was an angel sent down from Heaven, entrusted in our care by a loving Father above.
Lois, our first child, was born on March 25th of 1991. A dream come true; we were joyous as we took our little girl home the next evening. After a night only new parents experience, we were ready to settle down to a routine of baby needs.
Since I have a sister with MSUD, we were aware that we should be concerned. Arrangements were made to send a blood sample directly to Dr. Holmes Morton as this was a high risk baby. Reuben, my husband, had not taken a carrier screening test, and he referred to these hassled arrangements made by my parents a few weeks before the baby was due, as making a big issue out of this.
Before we left the hospital, the baby's doctor told us we should call his office if we hadn't heard from them by 2:00 the next day. At 1:00 the next day, after an attempt to breast feed the baby (she had a really hard suck, and I was so sore since I didn't have milk yet) I remembered the doctor's words. The phone rang. It was the doctor's nurse saying the MSUD test was positive, and we should come to his office right away.
Not until I hung up the receiver did the words sink in. There were many questions then which are still unanswered, but our lives have been enriched.
With the extra special care all of her 21 months, she has so far been spared a hospital stay. Much credit goes to Dr. Holmes Morton at The Clinic for Special Children and Dr. Duane Dilling, our family doctor. My parents, Ivan and Katie Fox, have also been a great help and stand-by support. I realize I cannot fully know how it is for new parents who are unfamiliar with MSUD.
A while ago, while paging through my pack of copied Newsletters from "before our time", I was reading the June 1989 Newsletter and felt compelled to share our story. We feel thankful for this blessing bestowed on us. The care of MSUD is different from what it had been; in so many ways:
- The 2,4-DNPH and Ketostix; ways of monitoring levels at home; have only been positive twice so far. Neither was during a sickness. We also depend on checking pH levels.
- The faster, accurate blood test work in the first year, readily gives the parents assurance and helps the doctor direct a strict monitoring program. We do not have to deal with an irritable, high-strung baby. If the 2,4-DNPH gets even slightly cloudy, or if the child gets more hyper, we can do something about it.
- So many newly introduced foods also make this diet more interesting and challenging for the mother. We have learned that in order for the child to have an appetite for other foods, the right amount of formula is important. Formula is filling. On a well day, Lois will take 22-26 ounces of formula; MSUD Diet Powder. This is less than when she was a baby and not eating other foods. She'll drink formula at various times during the day and some with each meal.
For breakfast she may have hashed potatoes, Cream of Rice with honey and Farm Rich, and also a dry cereal or raisins. I can use plenty of substitutes!
When I start preparing lunch or supper, she'll want part of a rice cake. She thoroughly enjoys her lunch of potatoes and a vegetable with added butter. She just started eating plain fruit, although she had liked fruit jam.
For supper I make her a homemade soup, potato or tomato, etc., or more handy; diluted Campbell's soups with low protein rusks for her crackers.
Last, but not least, there are many things that add different flavors to a meal. Children's tastes vary. Lois is no bread eater yet, but I am glad she started liking her cookies.
- They can grow the way they should; normal and healthy, mentally and physically. Lois was sitting alone at 4 1/2 months, crawling at 6 months, and walking at 10 months and 1 week old. We started her on baby rice cereal and applesauce at 4 months of age. To this day, she is a terrific eater!
At 20 months she would sit patiently lacing and unlacing her shoes; sometimes to Mom's disgust. Now at 21 months, she's potty trained and saying some three-word sentences. She weighs 33 lbs. and is 34 1/2 in. tall (her daddy is 6 ft. 2 inches!). To us, Lois is just like any typical, almost-2-year-old. She just needs her own special foods.
We feel thankful that God saw fit to bless us with another baby girl. Karen was born on July 9th of 1992. These two girls get compared more so than other sisters. Each day still has its struggles, but we have so much to be thankful for. We are just like any normal, healthy family!