The third week in May, Alex's social calendar was full! Her Uncle Mike graduated from Lewis & Clark State College with President's Honors and was Student of the Year in Applied Technology. Alex attended his banquet, graduation ceramony and BBQ. That Sunday, Alex traveled with three of her grandparents to a bowling tournament in Couer d' Alene, Id, where her Mom and Grandmom bowled.
May 17th was Alex's 3rd birthday. She seemed excited to have friends and family over to help her celebrate, although she was a little tired from the events over the weekend. On the 18th we visited Dr. Mike for Alex's 'Well Toddler' check-up. She weighed in at 29 lbs! We discussed down-sizing her trach tube and the possibility of her traveling to the PNDA Family Conference in Arlington, VA, in July.
Alex also visited the preschool that she will be attending in the fall. She was very interested in story time and like playing with the other children.
Secondly, we want to thank Mary of M.N. Bird Co. She and her sister design and manufacture swimwear for children. Mary ran across Alex's website and contacted us and sent Alex some suits for swim threapy.
Last, but not least, we would like to thank the PNDA and everyone who has donated to them, as they are helping us to make it to the Family Conference in Arlington, VA in July.
We will be partcipating in the park activiteis again this summer. Alex is looking forward to playing with her friends and doing her therapy sessions in the local parks.
In speech therapy we are working with a Passey-Muir valve on Alex's trach to help her to breathe out her mouth and nose, rather than her trach tube. This is one of the many steps that we are taking to wean Alex from her trach.
Looking back, we can now see that very early on Alexandra possessed dystonia-like symptoms. These symptoms included low muscle tone and wiggling her wrists and tapping her feet rhythmically. At 7 months, Alexandra had her first round of diagnostic tests. Since then, she had been through a battery of tests, but all the results came back "normal." We knew something within Alexandra was irregular. So we continued to test until she was diagnosed with Tyrosine Hydroxylase Deficient Dopa-Responsive Dystonia.
Alexandra's primary neurologist is Dr. Gregory McDonald of Sacred Heart Medical Center in Spokane, WA. When he preformed the last lumbar puncture, the sample was sent to Dr. Keith Hyland at Baylor University Medical Center.
After we recieved the results, Dr. McDonald sent a copy of the results to Dr. Kathryn Swoboda at Primary Children's Medical Center in Salt Lake City, UT.
Alex spent most of her recent hospital visit at Children's Hospital in Seattle, WA.
It will be a time for families to get together and meet with one another. There are also seminars with doctors specifically working with kids who have neurotransmitter diseases.
We are really looking forward to meeting the families we have been in contact with on the PNDA list serve. We are very excited to meet and listen to other doctors from around the country that may have new information and ideas for Alex's treatment.
For more information on the conference, click on the PNDA link below.
