April 20 2012  Tommy's blood work results came back with low platelet counts 170,000.  We will retest him in Aug/Sept because his platelets were at 190k last year and now are trending down.  I asked the dr if he could have what is called Wiskott-Aldrich syndrome and she said he might with the low platelet plus polysaccaride antibody deficiency syndrome.  But the platelet size looked good, they were large not small like that syndrome has.  The doctor wants to look in another six months to rule out leukemia or anything else.
April 6 2012 Tommy had general anesthesia for almost two hours for a sedated BAER hearing test and the hearing test showed that his hearing was well within normal range.  Now why he isn't talking will be ramped up a bit!  Tommy woke up much better from that procedure because I said no narcotics! 
March 2012 Tommy had general anesthesia for a procedure to look in his ears and possibly put in ear tubes.  His prior ear tubes had fallen out.  During that procedure the ENT at Seattle Children's felt ear tubes were not needed because there was no fluid behind his ear drums.  Tommy had difficulty waking up from the anesthesia and I believe it was because they used fentenyl for some reason.
10/17/11 Tommy has been G-tube free since 10/5/11 and the stoma is healing on it's own so nicely!  We have a check up with our PCP on 10/21 this Friday and will look forward to hearing his weight gain, height and stoma status.  To backtrack, we stopped using his g-tube for milk and water on 8/5/11 while on vacation in Montana.  And after working closely with our nutritionist and the Seattle Children's pilot study on comprehensive case mgmt for kids with complex needs, we received instructions that if the tube were to come out, just leave it out.  So on 10/5, Tommy's tube accidentally came out and out it stayed!  On that day I placed a bandaid over the stoma and it began healing so quickly.  I held my son for the first time in 4 1/2 years and didn't have a piece of plastic hanging between us.  Oh the sweet joy of that hug.  More to follow after this week's doctor visit.  Stay tuned.

Tommy and dad visited Seattle Children's for a clogged tear duct surgery follow up and a pe tube follow up the week prior to our Montana vacation.  They pulled a small drainage tube out of his left eye and *hopefully* this is the answer to all the gunky eye issues.  His left ear tube was also taken out, so now he is ear tube free!  It is 8/15/11 as I write this note and Tommy's eyes look wonderful and haven't had any issues.  His hearing seems to be fine also.

Tommy and I visited Bellingham Asthma/Allergy/Immunology this past week for his annual update.  Other than the dr being an hour late to the appt and the appt itself taking an hour and a half; all went really well.   We are hopeful that the Qvar twice a day will maintain his pulmonary needs thru the cold/flu season.  If not, we will go back to daily nebulizers of Pulmicort and Albuterol.  But I'm so thankful that he is doing well on Qvar and I don't have to do nebulizers that take about 20 mins each.  On the allergies, we are cutting claritin back to just as needed for grass and cat allergy.  Which is wonderful news as we are weaning the g-tube feedings and one less med is a blessing.  And on the immunology front, although he has Polysaccaride Deficiency Syndrome, which is a moderate immune deficiency, we are hopeful to retest this fall and see if his reaction to pneumonia improves.  There is a chance that by age 7 or 8 he could outgrow this deficiency.  A long update but a great appointment.

Last medical update is probably the BEST.  Tommy is doing so well learning to use the sippy cup with a valve.  Originally, when we started boot camp for oral drinking, I was using a valveless sippy cup thinking that he didn't have an adequate suck.  But after hearing him suck from it one day and probably getting a huge mouthful, I tried the valve.... and haven't gone back!  He LOVES chocolate milk and almond milk.  The nutritionist has us watching for sufficient wet diapers, tears, mouth saliva and he is doing great.  It's only been a good week of no g-tube use but ... soon it will be two weeks, then a month, then I'll call Seattle Children's and see if they want to take it out prior to fall season cold/flu or leave it in over that period "just in case".

Tommy Adventures