James M. - Quilt Finished in 2008
Born: June 23, 2006
Illness: Infantile Spasms, Intractable Mixed Seizure Disorder
A Thank You From James's Family!
April 8, 2008
We received the quilt. It is absolutely gorgeous! Pictures cannot do it justice. It is a wonderful unique gift. How wonderful that each person stitched so much love and so many prayers in each stitch for my darling son, whom they never met. We are truly overwhelmed. Thank each and every one involved in creating this beautiful gift.
Sincerely,
David, Lacy, and Jimmie
James M.'s Story
Written by James' mom in January 2008
Jimmie's parents are older. We got married (first marriage for both), when I was 35 and Daddy was 32. We waited a full year before starting to try to have a baby. We tried for a year before we went to the doctor. With the help of the OBGYN, we tried another 6 mos. Then we went to a fertility specialist. He promised he could have us pregnant within 3 mos. We were pregnant on the first try.
The pregnancy was perfectly normal. I have high blood pressure, but was/am on medication for it, and my blood pressure actually was lower pregnant than it had been before. Because of my age and blood pressure I was a high risk pregnancy. We had lots of ultra-sounds. Toward the end of the pregnancy I was having weekly non-stress tests. Jimmie was due on 7/3. On 6/20 I had my non-stress test. My amniotic fluid was down slightly from 10.3 to 9.83. The technician wanted to start testing me 2 times a week. On 6/22 I had an appointment for an ultrasound. They wanted to see how big Jimmie was because, I was quite uncomfortable. Jimmie was not big, but the amniotic fluid was down to 3.8. They told me to go directly to labor and delivery and that I would be induced. I was in labor throughout the night. At about 2 am my water broke, but since the amniotic fluid was so low, the nurse did not believe me (or at least she never recorded it). In the morning, the OBGYN came in to break my water. I explained what had happened. Jimmie's heart rate was dropping during delivery, and I couldn't feel the contractions at all because of the epidural. He was also not facing the right direction, down, but face up and would not budge. At 12:00 we were rushed to emergency surgery for a c-section, and Jimmie was born healthy and beautiful at 12:11 pm on 6/23. His APGAR score was a 9. We stayed an extra day at the hospital because Jimmie developed jaundice, but the jaundice cleared on it's own without medication.
I attempted breast feeding. The first month Jimmie gained just over 1 lb. The second month he did not even gain one pound. The pediatrician was concerned that I was not producing enough milk. We switched to Similac, and Jimmie gained over a pound in 2 weeks.
He continued to be healthy and happy and to develop as he should until he was 4 1/2 months old. At that point I noticed him seizing. His seizures looked rather benign...they were only a few seconds. His eyes would roll up and to the right and he would jerk a single jerk at the same time. But he would do this in clusters of 5 or 6 seizures. I told my husband about them for a week, before I finally had him witness them. We video taped the seizures and took Jimmie to the pediatrician the next day. We had an appointment with a neurologist within a week. The neurologist diagnosed Jimmie with Infantile Spasms based on the seizures and the EEG pattern of hypsarythmia. Because it was the Tuesday before Thanksgiving, she sent us home with a prescription for Topamax and B6. We were to return the following Monday to be admitted to Children's Memorial for extensive testing. Over the holiday, with the medication and B6 the seizures stopped. We returned to Children's as scheduled and advised that the seizures had ceased. A sleep deprived EEG was done instead of the other scheduled tests and the pattern was clear of hypsarrythmia. We were sent home believing Jimmie was B6 dependent. However, the seizures returned. When we went for our followup appointment on 12/14 the hypsarrythmia was once again present on the EEG. We were readmitted to Children's Memorial and began the testing. All tests were negative. We left Children's on 12/17 with a prescription for ACTH. Jimmie was on 2 courses of ACTH. The seizures got worse. But the EEG looked better. He still had focal activity, but the hyps was gone. The seizures have never stopped. His EEG has deteriated again to the point of being borderline hypsarrythmia. He has been on Topamax and Keppra, then just Keppra, then Keppra and depakote, then just depakote, then Keppra and depakote again. We are considering the ketogenic diet as our next course of action. That brings us up to date.
