Wednesday, March 18, 2009

Baby Blues.

No, not the REAL baby blues some people get........ I mean every bit of baby gear, EVERYTHING I own, is BLUE. I'm too practical to go buy all new pink stuff (Warren, keep your comments to yourself, here), but after 5 boys, I don't want people assuming this little one is a boy, too! :-) Silly, I know. I did start out, 11 years ago, making sure I bought gender neutral gear. However, after boy number 2, then 3 and 4, and finally 5 came along, we sort of gave up on the whole neutral color scheme thing. Our infant car seat is black, silver and blue, my jogging stroller is navy, my diaper bag is navy, all crib bedding and blankets definitely have a boy theme and are largely navy, bright blue, or red. We don't own a pink, purple or even yellow sippy cup! Potty chair? Blue of course - actually we own 2 of them.

Sort of a pointless post, but it's what's on my mind at the moment! :-)

Oh, just FYI, Matt is going to see the San Francisco doctor on March 30th! Yippeeeeee! Warren and I will take him on the 29th, he's got appointments most of the day Monday, and then we'll fly back Tuesday. Carolyn (my MIL) and Megan (my SIL) will be in charge of my other crazy boys. Keep your fingers crossed that this doctor is a-m-a-z-i-n-g! I think I've got my hopes up a bit too high!

Sunday, March 08, 2009

YIPEEEEE - San Francisco, here we come!

Not for anything 'fun' mind you, but something even better - a specialist who might be able to help Matt with his Endocrine issues! If you google anything related to pediatric endocrinology, especially if it relates to obesity, this doctor (Dr.Lustig) is mentioned. He has written and researched and pioneered a TON of studies on Matt's particular combination of issues. Parents on both my Panyhypopituitarism and Pediatric Brain Tumor boards just revere this man. His name comes up frequently. Well, in November I emailed him asking about a consultation and second opinion on Matt. My request was met with a rather curt reply that basically said we had competent Endocrine care and that he didn't recommend travel out of state to see him. He said he would be happy to consult with my doctor, but basically he didn't want to be involved with Matt's case. I was kind of grumpy about it, but figured there was nothing I could do.

Well, last week we had an excellent appointment with Matt's endocrinologist. We got a lot of things worked out that have sort of been hanging. Matt's weight has increased considerably since his last surgery. I don't believe his diet has changed, and he doesn't seem to be eating an abnormal or unhealthy amount. However, he has gained 10 Kg.(about 25 lbs.) since his surgery in December, and 5.5 Kg. in the past month. That is a gain of 11 pounds. In ONE MONTH! Seriously, you cannot eat that much, or have that sedentary of a lifestyle. I think about it in pregnancy terms - I've gained 18 pounds in 7 months and that is a pretty dramatic weight gain. To gain 10 more pounds than that, in less than 3 months is really quite mind boggling.

Anyhow, Dr.Donaldson (our Endo.) said he doesn't see Hypothalamic Obesity enough to treat Matthew. He has had a handful of patients with the disorder, and has been wholly unsuccessful in treating them, even when he has consulted with Dr.Lustig. He wants to hand over care to Dr.Lustig - and it was even his idea! I was so excited to go home and draft another email, mentioning that Matt's doctor was the one who felt like Matt needed to see him. He replied quickly and said okay. I'm waiting on the details of exactly when we need to book our tickets, but I do know they are working on it. I've been cc'd on several emails talking about tests and things that Dr.Lustig wants done.

I am just SO EXCITED and HOPEFUL that this Doctor has the skills and experience that will help my boy!

Thursday, March 05, 2009

Why do we buy them beds?

Last night, as Warren and I were checking on our boys before we went to bed, we found this. Hmmmmmmm, where are Nate and Drew? I know we tucked them in, all snug in their beds........ I remember reading a story, telling them several times to brush their teeth, and listening to them say their prayers.

But here we have an empty bottom bunk.......

And an empty top bunk........

And two 5 year old boys, snuggled up on the FLOOR! :-)

I am clearly missing the novelty of sleeping on cheap polyester blankets, on the hard floor, and sharing one puny pillow. All the while with two comfy beds, complete with cozy flannel sheets within sight! I am getting OLD! :-)