Its been a long time since I updated (stupid computer issues lol). So much has gone on. Dawson is doing well other than a throat/ear infection. I will try to write all that has been done since my last update (sorry if i forget some and re post others).
In October (on his 3 rd birthday the 24th)we finally seen genetics. Her finding were severe macrocephaly (well above the 100%) with a measurement of 55 cm. To show you how large his head is his dads head is 60 cm (he has a large head according to the genetics Dr) and my head is 54 cm (yes my 3 y/o has a bigger head than his mommy). His tone was good that day (his tone goes back and forth) while his feet showed pes planus foot position (not sure what it means will have to look it up) and his hand showed brachydactyly (he only has 1 thumb joint instead of 2 and his fingers are shorter than they should be according to the size of his palms) and of course developmental delay (more fine and gross motor skills) his speech is great and mentally he is at a 3 year level (problem solving ext). He had blood tests for Fragile X syndrome (we are almost 100% sure it will be neg) and quite a few other genetic disorders and another CK level to make sure it is still not rising plus some urine tests. They will let us know in a few months if any are pos. While we were there we did his lower level skeletal xray series. This took in his hips,frog leg position,Knees and ankles and he also had a spinal xray and palate/jaw xray. Over all there was not anything that stood out as to Genetics but he will be seen again in 6 months.
A few days later we got a call from his pead regarding the xrays. He has a large amount of extra fluid in his knees that suggests Arthritis (we have only asked the dr's 30 times if this could passably what is causing his pain and were told no over and over). So she wanted to see him asap to start a new med in hopes it would take away some pain. The stuff was VERY yucky and hard on his tummy we got 2 doses into him and sure enough it had already started to hurt his kidneys (he has always had blood in his urine but with no pain. With this med came pain and more blood in his urine) so she ok'ed us to take him off until we see a Dr in Toronto. There are no pead arthritis dr's here so we have no choice but to go there. She also referred him to a Urologist. We still have no appt dates for both.
Halloween he was sick so off to the hospital we go turns out he has phenomena (poor guy can not catch a break) so he had more xrays for that (than repeat xrays to make sure his lungs had cleared up). Thankfully we got the meds into him and he was feeling ok to do some trick or treating. It turned out to be a REALLY rough night. We do not have a stroller for him (someone stole it) he had to walk (daddy carried him a bit and so did I but he is 40lbs so we can not carry him long lol). Daddy bought a wagon the next day lol. We are making an appt with seating to get a new stroller soon. We got on the cancellation list for Dr.Carey (ortho) and we see him on dec. Dawson will require braces for his knees from now on (to help with pain and swelling) Dr.Carey will get us those. He has a renal ultrasound and upper body skeletal xray series coming up in dec also (going to make for a long week but at least they are getting done). We got the appt for his knee and head MRI (they will be done at the same time and he will be sedated) Oct 28th 2009 (this i think is BS) But who am I right lol. He has been having issues with not peeing on and off since Halloween so we were back at the peads yesterday for that. We "think" we figured out why he is not peeing (first off he is soooo sick with this bug she thinks his body is reserving his fluids to fight the infection and second he might be trying to tell us in his own pee holding way that he is ready for big boy undies) so we are going to wait until he is feeling better and go get some diego underwear. Also when he is feeling better she does want us to do a 24 hour urine collection to make sure (just to be safe not that there is for sure anything wrong) that his output is what it should be. We got away with no blood work yesterday YAY!!!!!!!
So onto dropping like flies. Dave brought home a nasty cold/flu back in sept. After he got better it was moms turn than 1 by 1 the kids started to get it (and passed it on to grandma lol). We all got over it (without hospital trips lol) but since than there has been at least 1 barking/coughing/sneezing kid. Keegan has a sore throat and ears,Emma is home sick with sore throat and fever,Mikalah is coughing,Owen wheezing,Dawson throat and Ear infection (on an antibiotic for the second time since Halloween) and Jenna a slight cough (usually our sickly one with her lung disease). Knock on wood mommy and daddy have not got it back again. So cross your fingers they all get better before Santa comes.
Friday, November 28, 2008
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