Tuesday, September 6, 2011

Our Medical world

Lots of Little people have many issues that they need operations for to help with, for that reason LP's see many specialists!!! We saw our first of many today! It all started 2 weeks ago when we went in for our normal wellness appointment and they measured Maddies head. It was big even for the LP chart. We came in the next week and had it measured again, 4 more cm in 1 week....wow. Because of the rapid growth our pediatrician was worried about hydrocephalus. She sent us for an ultrasound. The following Tue we went in for the results....after waiting 2 hours they said our Dr. had an emergency and to come back.....we came back and waited another hour and a half to finally talk to her and find out Madilynn's ventricles were normal so that rules out hydrocephalus. There still was fluid around the brain so she referred us to a neurologist (in Sacramento). We saw him today (great Dr.....very smart and a specialist in dwarfism) and after waiting 2 hours to see him for 10 minutes (seriously what is it with Dr's???) he has ordered an MRI and sleep studies. He did say the extra fluid is very common with achons (which I knew from my own research) and that she looks healthy and is progressing on schedule!! I think the MRI and sleep study will be this week (Fri) and that should rule out several possible problems common with achon. Next on our list of specialist will be the orthosurgeon and the ENT.....we'll keep you posted!!!

7 comments:

Tiffany said...

She is just too cute! I admire your amazing attitude and strength dealing with all of her health issues!!:)

Emily said...

Keeping Madilynn in my thoughts...I hope everything goes well with the tests!

IJ y JD's Mami said...

She is a blessing and she and your family will be in our prayers.. we Love you and I hope all the best .. Maddy is Adorable...

Becky said...

So glad everything looks good so far. Are things getting more manageable yet? They will if they haven't already. It's not always so hard.

Lyla Our Little Miracle said...

Good luck with everything! We are praying on our end! Lyla had her first and only sleep study at approx. 6 weeks old. She has no apnea issues. I hope that's what happens with Maddie girl! Xoxo

Caden and Mommy said...

Hi Kerri~ Thank you for all of your sweet & kind comments on my blog. Your girls are adorable!

I know it is so hard to imagine it right now, but know that all of the appointments for sweet Madilynn will slow down as she gets older. I remember LP Mama's telling me that two years ago and I thought no way. But it's true, the appointments are less frequent now. Caden also had a rough couple years respiratory wise. He would catch every bug! But that has slown down too as he has gotten older ~ thank goodness!

Good luck with the sleep study. Caden has always done well with his! He totally amazes me! It's me the momma that hates staying there with him. Blech! Caden also has/had lots of extra fluid around his ventricles. I think its that extra fluid that kills me everytime he bonks me with his big ol achon head :o)

My advice for appointments. Always try to get the first thing in the morning appointments. I will even schedule a few weeks further out now if it means I can get a 9 am appointment vs a 2pm appointment. We once waited THREE hours for our neurosurgeon ... and just like you the appt ends up being five to ten minutes. Serious?! Then I'm so flustered from waiting so long and trying to keep my child sane that I forget all the questions I had for the doctor. AHH!

Have a great weekend! I look forward to following your adventures on your blog!

Christine said...

Thanks for "visiting" the blog! I found it so helpful to connect with other parents of dwarfs when my children were little. Even though my husband was short he was the only one in his family and not associated with LPA or any other organization that taught him about his condition.

My son has hydrocephalus and had surgery at 8 months. They also measured the size of his head and kept up on it and it wasn't until about 6 months or so that they started looking into it more. There are symptoms if she does have it like being lethargic and cranky (I noticed when I took him on walks around the neighborhood he would cry every time we went over a bump). I'm sure the doctors will keep on the watch with her in case it develops later. If it does the technology is very good and my son has lived a normal life with with his shunt in. Hope the tests will help figure out whats going on.

Your daughters are adorable, reminds me of my little girl when she was a baby!