Genetics - March 24th, 2006

We followed up with Dr. Uhas at Scottish Rite for our genetic concerns for Maggi. Dr. Uhas examined Maggi from head to toe so that she could note all of Maggi's "syndrome like" features.

Naturally, blood work will need to be done, as well as a few other tests. Dr. Uhas noticed quite a few characteristics and noted them. Also, she took some pictures of Maggi to hang up in her office to review daily.

Maggi definitely shows signs of a syndrome. Which one? Only time will tell after all of the blood work is sent to Philadelphia. It usually takes 6 or 8 weeks.

Maggi not only has CRANIOSYNOSTOSIS, PLAGIOCEPHALY, DEVELOPMENTAL DELAYS, SCOLIOSIS, and REFLUX...she also has the following physical characteristics:

1) Deformed Thumbs (they are "finger like")
2) Deformed Toes (her big toe almost looks "jammed" into her foot...hard to describe)
3) Tear Duct is outside of her Left Eye (it is actually on her skin, underneath her eye)
4) Right Leg turns inward
5) Joints Pop
6) Possible hearing issues in the right ear

Only one syndrome was mentioned, naturally it is a "shot in the dark"...but we are going to just wait for testing. Dr. Uhas has recently seen a couple of children with the "Levy-Hollister" Syndrome and they have some of the same deformities as Maggi. Two of their major issues are kidney and heart problems. Dr. Uhas ordered testing for Maggi's heart and kidneys to be on the safe side. WHICH WE TOTALLY AGREE WITH.

UPCOMING TESTS - April 13, 2006
Ecocardiogram
EKG
Renal Ultrasound
Blood Work for Genetic Testing

UPCOMING DOCTOR VISITS
Opthomology - April 4th, 2006 (Maggi is having problems with Right eye)
Orthopedics - May 18, 2006 (follow up on Scoliosis)

11 Months Old!

Hey, Everyone! Isn't it GREAT? I am only ONE MONTH AWAY from being a big girl! One Year Old! I can not wait for my birthday! I Love All of You! Look at my new pictures, too!

Maggi

Eating Like a Big Girl

Look at me, eating a cookie! It sure is good! My top tooth is coming in and it sure does feel good to rub it on my gums!

I love all of you!

Feeling Tons Better!

Look at me in my BeBe Pod!

This is the greatest thing my mom and dad have gotten for me in a long time, it actually helps me sit up all by myself!

Finally, I am feeling tons better and am trying to handle all of these kisses my daddy and mommy keep giving me. We have a lot to celebrate!

Thank you for praying for me while I was really sick in the hospital. I never want to be sick like that again and I hope no one ever gets that terrible Rota Virus! Everyone keeps telling me I am a little miracle and I truly believe I am!

God Bless all of you every, single day.

Maggi