My Surgery & Health

Well, all of you know that I have had a tough time since I was born. I started out in NICU for almost three weeks and I got to go home Mother's Day Weekend! Once I was home, I had tons of doctor's appointments. These are the kind of specialists I have seen since then:

• Nephrologist - for my hypertension
• Plastic Surgeon - for my surgery in August
• Neurosurgeon - for my surgery in August
• Geneticist - to test me for syndromes...which are all negative
• Gastrointestinal - for my acid reflux
• Occupational & Speech Therapist - for my feeding problems
• Nutritionist - for my feeding problems and weight gain
• Cardiologist - to make sure my hypertension was not affecting my heart
• Neurologist - to make sure my brain was functioning properly

Mom and Dad are usually driving me around two to four times a week for these appointments! We are lucky to have Dr. Lewis with Scottish Rite practicing at the new hospital in Fayetteville! It only took 15 minutes to get there for my appointment on Friday and he said I was doing GREAT! Hopefully my reflux will go away by age 9 months.

Now that I am three months old, I am growing and gaining weight. The specialists are doing surgery at four months of age because my blood platelet level will be ideal for surgery and the skull will be easier to work with then. But, as I grow, my skull is putting pressure on my brain and sometimes it causes me to have more drainage and I choke. Mom and Dad keep me suctioned and clear all of the time. They take my temperature everyday to make sure I am alright. When I had to go to the pediatrician this week, Mom & Dad thought I had an ear infection because I was pulling at my right ear. But boy, I fooled them...I had just discovered my ears and was playing! So, it was really good news.

Please know how much I love my Mommy, Daddy, and my Family! They are smothering me with kisses and spending a lot of time talking to me so that I can progress more in my development.

GIGGLED!
YES! I GIGGLED for the first time on 7/22/05! I laughed again for mommy today, also! I am feeling better because I have so much love and someone around to always take care of me and give me my medicine (and kisses and kisses and kisses).

PREVACID
Right now I am only taking Prevacid. I used to be on four different medications and had to be on a really tough schedule of meds. It was hard on all of us and I was always sleepy. Now, I am alert and can interact with everyone. (thank you Dr. Lewis!)

HEART MONITOR
When I got home from Scottish Rite on June 17th, the nephrologist had a Heart Monitor sent to my home so that it would help my Mommy and Daddy know when I stopped breathing for more than 20 seconds. Luckily, I have only gone into APNEA four times and my heart rate has only shown as being SLOW, once! Usually I wear this IF my parents take me somewhere in the van and I ALWAYS wear it at night so it can alert them when they are sleeping. The only thing I DO NOT LIKE about it, is that it rubs me red on my skin! But, Mommy puts some A&D ointment on me to ease the redness.

LINK::
Children's Hospital of Atlanta/Scottish Rite
www.choa.org