Photo's

Saturday, May 10th, my niece graduated from high school. Way to go Sarah!!!
We went to the reception and I got some good photos which I want to share. Makenna made a new friend! Emily was so good with 'Kenna they became fast friends.

This was after they all changed cloths and ran/rode until tired. Of course the kid riding isn't as tired as the rest.

It was also my mom's birthday, Happy Birthday, MOM!! She is always trying to get a good photo of Makenna. She has taken most of the good ones...but statistically the number is still low.

Time to explain

Hi everybody! (Thanks Daan for the really nice comments.)
I have been on an extensive Internet search for 4.5 years. When a doctor would speculate on say Noonan Syndrome I would search the heck out of it. Down to following links to CarePages, blogs, family photo albums. And what I observed was "Ken and Barbie" (beautiful, young couple) would have a kid with a disability and over the course of 3-6 years of family photos the parents would look like they aged 10-20 years. REALLY! I am sure it is happening to me. But I was never a "Ken doll" type so I really don't care. But I haven't shared any good recent pictures of myself. So I owe some people that.

This was me a few years years ago. A couple years before this photo Makenna was born. Back then I only had 5 or 6 grey hairs. But 8 years ago, before I got married I didn't have ANY grey hair! So I don't know what to blame this premature aging on really? Now my mustache looks thin, especially in this photo, because it has turned to silver, mostly. And my chin looks huge as my cheeks suck in....

This is a photo of me today! Man! the last couple years have taken their toll!!!!

Clyde

Hi Friends

Sheri has invited a few people to visit. I am glad she approves of everything so far. I will post some photos I was never able to share with friends, much less the world. These photos are from mid/late 2004 (about 7-9 months old). She got glasses at 6 months old. I think the photos are are important in our story. . The glasses are important, too but that is a different story! I apologize if this blog seems to jump backward, forward, then backward in time. All I can say is try and keep up people! I don't see how my random thoughts could cause you problems? I will try and label posts to help! But labels and time line are not the same. The middle photo is just cute and really shows her, "little carpenter hands". The bottom photo is mom and Mak' and one of her first smiles/laughs. The laughs were rare commodities for the first two - three years. They are almost none stop now. The top photo is Little Mak in her first spica cast, bilaterally dislocated hips. One of her multiple congenital anomalies. Four years after this photo I can say the hips are NOT in place, and she has reached a point where putting them in place (through surgery) is no longer an option. So that is the first time I can say hopes and reality collided. The hope: (They would do surgery when Makenna showed signs that she will be ambulatory, (crawl/walk)...or something like that). So we can only blame Makenna! Because she still doesn't show signs of crawling, or walking. I didn't know there was a time frame, I specifically asked about, "crawl by 4 years old or walk by 8 years old, if not forget it?" I got that off of some orthopedic website. Our ortho hadn't heard of that theory, or agree with it I guess because we did not have until 4 to prove crawling. We just learned, one day, "it is too late to discuss putting those hips back in place". Maybe they were right? At almost 5 she still doesn't show signs of crawling or walking. She shows interest but no real effort! I honestly believe she will walk some day, but it will be no credit to the Pavlick harness, the spica casts, or traction. I never got a read on the doctor's opinion about his optomisim at the beginning. And I still don't know if he is supprised with the outcome? But you have to try somthing and we are thankful for all he did. Same with future posts about scoliosis. I really shouldn't even know how to spell that word...scoliosis, much less what it might mean to an infant, and worry about what it will mean in her future.

Welcome Friends

My Miss Makenna was born Sept. 2003. "Multiple Congenital Anomalies"are words that marked that day, the next and the next more than, "Congratulations Mom and Dad!" did. As this blog develops I hope to share with other parents what my family has been experiencing for the last four and one half years, raising a child with Pierpont Syndrome. It is relatively new Syndrome. Very new to me! (6 months since diagnosis). Very few of the families who have children diagnosed with Pierpont personally know of more than one or two other cases. There is NO information on the Internet about it. With the diagnosis comes a sense of isolation that I am unable to describe. I hope I can change that for families with wonderfully fun, happy little humans, that happen to be one out of millions.