Welcome to MacKenzie's web page. Hi, I'm Danielle, Mac's mom Mac has Pfeiffers Syndrome. I created this web page as an informational site as well as a place to find other related sites and other parents to talk to.
MacKenzie is 5 and starting 1st grade.
Today is Mac's 1st day of 1st grade. I cannot believe how fast she has grown. It seem like just yesterday she was born and now she is in first grade. Well over the summer Mac welcomed her new baby brother to the family. Caden Thomas was born June 30, making his debut 7 weeks early. Mac is in love with her new brother and makes sure he does not lack for kisses and hugs. For the most part everything is normal. We are going to try for a surgery-free year. We are being closely followed for our shunt and hearing and eyesight, but so far things seem to be going well.
I have updated some photos on the photo page and as soon as i can figure out how to make some photos smaller I will add more. Please email us if you ahave any questions or just need someone to talk to. The link for email is below. Also Please sign our guestbook below. If you have your own story or photos you would like to share write up your story and email us and I will add it to our friends page. Mac loves to hear stories of other kids, makes her realize she's not alone. Well goodbye for now.
May 18, 2005
Since I last updated, alot has happened in Mac's life. In August of 2002, I fell in love with a fabulous man named Thomas. In December of 2002 MacKenzie, her sister Cheryl and I moved further north to join a new family. April 23 2003, Mac welcomed her new sister Riley Catherine into the family. In October 2003, Tom, his 3 girls, Meghan, Brianna and Allison offically became our family. We were now a family of 7. And Mac finally had a new daddy.
In March of 04 Mac had a sleep study done and it was determined that her Oxygen Sats were dropping when she slept. She was not exchanging the O2 in her blood well. She was placed on O2 at night and in April she has her Tonsils and Adnoids taken out. This improved her breathing.
In May Mac's eye Doctor, Dr. Johnson, noticed some swelling on her optic nerve. This prompted new CT scans and a trip to UCSF for a Lumbar Puncture. The pressure came back as elevated. She was placed on medication 3x's a day to lower the intercranial pressure in her head. In June we went back to UCSF for another Lumbar Puncture. Her pressure was still too high. Dr Hoffman and Dr. Gupta at UCSF decided to do another Cranial remodel to try to lessen the pressure and give her brain more room to grow.
In August Mac welcomed yet another sister into the family. Aug 20 2004 Kassiah Tommy joined the family 7 weeks early. In October We went back to UCSF for another Lumbar Puncture. Pressures were still too high so it was decided that she needed a shunt placed. Oct 8 we placed a shunt in Mac's head releaving the pressure inside of her skull.
Things seem to be going well and In August 2005 Mac will be welcoming her baby brother Caden into the family. Making us a family of 10. She is excelling in kindergarden and will be moving up to the 1st grade in August.
Last Updated May 18, 2005
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