Little Mak': One out of Millions

Matt and or Hayley

clydegbryant151@hotmail.com (Clyde) — Tue, 08 Dec 2009 07:34:00 +0000

This is my test. No you don't have to reply to this post. But you have to find your way here. And you have to Post here, say what you want! I realize this may be very demeaning to you at this point. My goal is not to demean anyone. Here is my site about Makenna, look it over. I can ask questions of you because I am willing to share. I will check back in a few days, no rush on your part. I will know if you have been here. Clyde Bryant, Ogallala Nebraska.

Makenna at Work Video

clydegbryant151@hotmail.com (Clyde) — Tue, 29 Sep 2009 18:12:00 +0000

I could not cut the AVI into small enough chunks so I posted to YouTube and will link back to it, or upload it or somthing? I don't know. It will take a long time to load, I do know that!

Somthing new

clydegbryant151@hotmail.com (Clyde) — Mon, 28 Sep 2009 18:01:00 +0000

Makenna went to work with me two days last week. She stayed home from school Thursday with mom, because she had a touch of the stomach flu Wednesday night. By "touch" I mean I changed the bedding in her crib 4 times, it was a long night of vomitting. But mom had to work Friday. So Makenna went with me Friday and Saturday. This video was taken last Friday, Sept. 25, 2009. It shows her in her Kid-Kart, on the job and two of the "sensory issues" she has: 1. being outdoors, 2. touching leaves, grass, animals with long hair......... not to mention already having a queasy tummy. But she does like being on the job, around people, and the chance to explore new things. I do enjoy having her with me but as she gets older and more demanding for attention I find taking her to work is like, "firing two good men". Credit is due to my mom. She came along on Saturday and watched Makenna so I was able to get something done!

The people in the video are: my brother Ray (loading stuff in the pickup) and his wife Laura. They are the ones building the new home. The other person is Tavis Auwerda, from DJA Construction. This was his first job with his new concrete stamps. I really like the way it turned out. You can kinda see the stamping in the video. It looks a lot better now that the "home made" forms were stripped and the release agent washed off.

So I guess this video is about Makenna and concrete stamping. I have wanted to do a stamped concrete job for years but did not want to own all the stuff to do it....Thanks Tavis.

Facebook?

clydegbryant151@hotmail.com (Clyde) — Wed, 11 Mar 2009 00:59:00 +0000

Howdy

clydegbryant151@hotmail.com (Clyde) — Mon, 09 Mar 2009 02:03:00 +0000

Well, rare disease day came and went, we didn't celebrate.

Makenna is doing awesome! Healthy once again. We had a big pow-wow at school last week to plan Makenna's inclusion in Kindergarten next year. The school system is planning good things. I guess I didn't really know what the meeting was to be, as it turned out they wanted our input and it all seemed so serious. I went to college with less planning and fewer people knowing I was coming, me included until the last week or so, honest. It is very surreal. Every step is good, but every step is too difficult to describe. I have a photo of my brother and me heading to kindergarten on our first day: we had our mats under one arm , a box of crayons in the other hand and our hair slicked down. (I haven't looked at the photo for a while but it was either a box of 8 or a box of 16, I suppose the "snooty kids" had 32? I don't know if they had 64 or 128 colors then?) Things have really changed, for the population in general, and for parents of special needs kids especially. I am trying to adapt, Makenna is worth it.

Celebrate Rare Disease Day!

clydegbryant151@hotmail.com (Clyde) — Wed, 25 Feb 2009 02:18:00 +0000

This year, Rare Disease Day is February 28th in most countries. There is one place in the UK who will host a gathering Tomorrow, Feb 25th and a couple on March 3rd. I just learned about it and wanted to put a link up: http://www.rarediseaseday.org/ I couldn't find any place in the USA where there is a gathering for families and children as is happening in other countries. I suppose there are? But the UK has three sites planned, as I said earlier, and Ireland has one event planned on the 28th in Dublin. Again, just like us we don't live all that close to where the cool stuff happens.
Any way, The UK's You Tube video was better than the USA video.
But visit the site. I also wondered what "disease" meant? It is interchangeable with "Disorder" for our purposes on Rare Disease Day!!

Greetings!

clydegbryant151@hotmail.com (Clyde) — Sat, 21 Feb 2009 01:51:00 +0000

Things have been slow on this site. Special thanks to Danielle for pointing that out. I think I will start posting photos of things just related to Makenna and her care to make a post. And it may serve a great service to people who stumble on this site? For example: Makenna hasn't been feeling good, so we have been hanging out together for a few days. And at one of her feedings when I decompressed her I got a "classic syringe half full of yellow stuff"! (not just a little but a lot) And I thought, "I should take a picture of that because it has been months since I have seen that!" And Sheri and I had to wait a long time to see our GI doctor to question how normal that was (years ago when we saw it all the time). We really began to panic. So I think a photo of that here would be a great community service. And when the Internet begins to incorporate "smell" you will get the full effect. ...I guess a bright shade of yellow, thin, smelly fluid is normal (they said then). I am saying it is "normal" when the kid isn't feeling good. I wish I could narrow that down some more but I can't.
And this blog has always been a place to announce any new information about the http://www.pierpontsyndrome.com/ website, which doesn't give me a lot to write about either. But I did receive a letter from the family in Northern Ireland!!! (That would be "boy two" in the first AJGM article. Or Dominic!) I don't know how much I can share about this boy either? We haven't gotten to the point where I can give names, or many details... but his mum said she would send some pictures to include on the website. This would be through a friend/service provider who does use the Internet. (I really want to type her name here and thank her! I won't till they say I can, but thanks "A"!) I will give that a while to happen and if it doesn't I will scan some photo copies and see how that looks on the web, because I do have permission to put some photos up. I will summarize her letter to me as (this is the part I don't know if I have permission to say so I will be precise and mostly vague), "Dominic is 14 years, 9 months old now. His vocabulary is one word, but is very vocal! He does eat orally, with some modifications. He has scoliosis which will require an operation, and is on a waiting list." My thoughts are: He looks like a happy, bright boy who anyone would enjoy being around, and they do!! And a glimpse 9 years into the future was priceless for ME!

People in Pierpont

clydegbryant151@hotmail.com (Clyde) — Sat, 24 Jan 2009 02:06:00 +0000

We haven't taken any photos of Makenna since the Christmas photos. I could write about her cold(s), her 24 hr flu that took 4 days to recover from (feedings can go horrible so fast!) or her recent medical/medical equipment information. I know for some it would be fascinating and I know if a new Pierpont parent stumbled on the site that kind of information might be enough to encourage them to post a reply or follow up with me privately? But to our family and a few others I just think it is the same all over and not worth wasting my time writing about. And I don't think a post without a photo is a good post. I visit many sites, as time allows, and if there isn't photos I don't spend a lot of time there...unless the author is a great writer with a lot to say. I could say a lot but still wouldn't be a great writer so I leave that to others! That only leaves me the option of discussing/commenting on a photo or two.
Here is a photo I have had for months. This is a group photo from the UK Genetics conference in 2007 or maybe spring 2008. I am going from memory on this fact: I don't recall where I found the photo but think it was taken at the Inaugural Joint Meeting: UK/Dutch Clinical Genetics Societies? I expect some of you to see YOUR child's geneticist in this photo. And I hope to be able to fill in some others names. I think I know who three people in the photo are but have 4 faces to three names, or I could be wrong and only have three names and all wrong faces? No, I know I have ONE right. This photo came from a search so I would be able to write to Isabel, about her geneticist. I never sent that letter. But I have been able to find much information about her geneticist after searching the web. She is very committed to her work, and very respected, and upper management in her profession...and still in this photo! I will add here that a search of one person gave me a better understanding of how interconnected the medical community is "over the pond" and how interconnected our family's could be.

What I think of this photo is, "there is a group of wonderful people with great minds!" I realize there is a lot more to their day/week/month than Pierpont syndrome. But we aren't doing much to push them for information about Pierpont Syndrome, or any similar set of symptoms. And Pierpont Syndrome has been mentioned at least 4 times in their meeting's minutes in the last 5 years so they know a lot more than they are sharing. I would like to hear from people who recognice the faces in this photo!!

Merry Christmas!

clydegbryant151@hotmail.com (Clyde) — Wed, 31 Dec 2008 02:28:00 +0000

Late but a Christmas post non-the-less!

This year Makenna was a "ham" at the photo shoot. So I made a collage. We couldn't decide which one photo or two we liked best so to stop the debate we did this. We are very proud of her riding her rocking horse! It was a gift from Grandma and Grandpa Larsen a couple years ago and she is now able to stay on top of it! Yeah!

This was also the first year we handed Makenna over to a "store santa". And if you look close at the background it wasn't at Wal-Mart! (It was at Cabela's. Can you find the Elk, Mountain Goat, Big Horn Sheep, Mule Deer and Black Bear? (If you find more than that let ME know.) It was FUN. Sheri and I guessed she would just EXPLODE once she was handed to Santa and then touched his beard. Nope, they got along fine.

'Kenna is doing really good this winter! Feeding is better, sleeping is better. She has had a couple colds which slow her down but overall things are going great.

This is not a flattering photo of Makenna or my mom, Mary. But Sheri and I liked it! This was taken after we got home from the Cabela's trip (the santa photo from above). It is hard work to travel, shop, eat, shop, eat and travel home. And when you have a good friend to cuddle with there is no reason to talk about your day!

Merry Christmas and Happy New Year to All!!! Clyde, Sheri and Makenna!

Another Costume

clydegbryant151@hotmail.com (Clyde) — Mon, 27 Oct 2008 00:01:00 +0000

Well, I liked the TWO costume ideas Sheri had. And after getting the first one ready I really hoped we were done, for this year. I guess not. But the outfit based around the Kid Kart won't work for visiting people on halloween, I guess? So we finished another costume today. I won't tell you what it is... until after halloween. Look at the photos and if you can guess what Makenna is supposed to be you should win a prize, you won't, but you should. Clyde

Halloween creativity

clydegbryant151@hotmail.com (Clyde) — Fri, 24 Oct 2008 18:25:00 +0000

Hi ALL!

I now know the fun of dressing a kid for halloween. But it was my first time and it was fun, kinda. (The first 4 years were a "Bumble Bee" costume given to us by a good friend, thanks Kim. It was very cute, and easy, I am sure I will miss that). Anyway, Kidz Construction Preschool and Learning Center decided to do a halloween program instead of a Christmas program. It was a hit, lots of people showed up and the kids were having a lot of fun. Sheri found this great idea somewhere for Makennas costume and fortunately I had all the stuff laying around. I spent some time washing 8 years of "attic dust" off of it, but that was ok, and it was snowing on me as I had it spread on the lawn to clean it.

For people who "know" Makenna it was a popular costume. For those in the audience who don't know Makenna I suspect they didn't get it. Look at the photo a while...do you get it?

A skiier with a broken leg! Sheri really did us proud! I thought it was hilarious!!

I have to introduce a new person here. I have never given credit to Chauncie on my blog. But I finally got a photo of the two of them, in which Makenna looks happy enough, to publish. Chauncie works for the Educational Service Unit who works for the local school district and spends three days a week at preschool with Makenna. We really appreciate all Chauncie does for 'Kenna (and we don't tell her enough). And I know Chauncie has really been instrumental in Makenna's development. So thank you Chauncie! And Chauncie has made it to everyone of Makenna's "programs" the last three years....Taking time away from her family and her evenings to be there for Makenna. She is awesome!

Okay one more photo:

And one that Sharon J. took of about half the kids on the stage. (My group shots didn't turn out very good. I was too far away, too short and using and using a cheap camera. But I am used to all of that!) Thanks Sharon. She also got some good photos of just Makenna that she shared too.

I think Sharon got the best picture of Makenna overall. So I will post that also. The difference is I use a large format so if you really want to look close you can....more medical than photographic, I suppose.

The Photo I like best is: This one. Kinda laid back thinking, "all these people are here for me?...well of course they are! I'm here, they are here, so it must be about ME and my broken leg...!

Soeren Palumbo Fremd HS Speech 2/28/07

clydegbryant151@hotmail.com (Clyde) — Fri, 10 Oct 2008 19:01:00 +0000

This is the best speech you will ever hear.

Birthday Girl

clydegbryant151@hotmail.com (Clyde) — Sun, 21 Sep 2008 01:47:00 +0000

I will publish this no matter how bad the photos and text are. I worked on it twice and trash-canned it. But now you get what you see. I need to get a new post up.

Here is a rare family photo. And not a bad one either (thanks Tanya). The Photoshop "red eye" fixer made Makenna look a little spooky but still not bad...

This is a little game Makenna likes: "Bet I can pull your hair hard enough to make you cry!"... she won...again...I am not as tough as I once was.

And this would be the traditional cake and ice cream on the face photo.

Some News

clydegbryant151@hotmail.com (Clyde) — Wed, 20 Aug 2008 20:14:00 +0000

We are doing good. Makenna and I are just getting over our "summer colds". And it has been long enough I will post some developmental info about Makenna.
1. Personality and attitude are right on track (for a 5yo girl, she has tons of both).
2. Speech is lacking but she makes many different sounds that let you know her opinion.
3. Still no crawl, walk, talk or eat.
4. She "jabbers" for hours at times, especially at bedtime.
5. She has had a pretty good summer. Won't wear her glasses, hearing aids, or brace. So things have really gone her way for a while.

Some awards should be offered for people who visit this site?
So a GOLD STAR goes to Daan (Daniëlle) for being the first to see I put my last post up 6 times, and leaving a slightly sarcastic comment. A SILVER STAR goes to Sheri for telling me I put the last post up numerous times (Daan's comment was there so I know she gets the gold). And I guess I get the bronze for deleting numerous, repetitive posts.
This rating system is obviously a jab at the 2008 Olympics. I am tired of them, at least the stuff on NBC. I could rant for hours about them but will only say, "no one I have ever known has spent much time at the pool or gymnastics center on the balance beam!" I have actually meet two people who have been on past Olympic shooting teams and I don't even know if we have shooting in the Olympics anymore? AND the US Basketball team should do real well. I guess some of them even leave their hotels and visit the Olympic complex from time to time, this year. I am sure it is difficult for them to "rub elbows" with the common folk. I should get this quote in order before I try it from memory...oh well, I should do a lot of things. A comedian on tv the other day really put it in perspective, (this is more of a paraphrase than a quote) "Why do we get excited about the Olympics? It is based on everything Americans don't like: It is full of foreigners and America doesn't always win!" Enough of that.
If you have read this far I wanted this post to my blog to ask everyone to visit http://www.pierpontsyndrome.com/ site and go to the "OUR KIDS" page. There is something new there. The Pierpont family in the Netherlands has allowed me to put a picture of Daan on there! I only posted as much of a blurb as they wanted but I am excited to add a photo. Daan's mom was the first Pierpont parent I was able to contact. She was the second parent of a child with many similar needs I was in contact with, the first was Daan or Daniëlle (Puk's Mom).
I will add MY thoughts here about making contact with Daan's family . This Pierpont family is doing very good, as we all do. I received much encouragement and understanding from Alice. And with her help and her contact with Dr. Hordijk and his willingness to correspond. I gained much information about Pierpont Syndrome from these contacts. I will always have a special place in my heart for this family. The first time she sent me a letter and a couple personal photos (one is the photo on the website) I was elated for weeks. I have now met other families that have been just as rewarding...but she was the first Pierpont mom, and that is extra special to me.

Bi-annual trip

clydegbryant151@hotmail.com (Clyde) — Sun, 27 Jul 2008 00:07:00 +0000

Hi all,

Makenna, Sheri and I just got back from our "6 month trip" to Omaha. It was due in June but 'Kenna and Mom were in California at that time. We were able to reschedule the dentist; audiologist (hearing aids); orthopedic (scoliosis); and orthotics (the guy who makes the brace for the scoliosis). We were unable to reschedule the opthomoligist until September.
It was a typical trip. We learned things we expected and we learned things we didn't expect:
First of all Makenna is loosing one baby tooth. Bottom, front. The x-ray showed the permanent tooth pushing it out of place. If there hadn't been a fight between the xray tech and 'Kenna and then Sheri noticing some bleeding gums I really don't know if we would know that much. It was a good answer to the blood. After the questions about, "did her teeth come in early"? No. "They actually came in late", we said. All I was thinking was, "you should know that, you have all the records". "Normally kids don't get their first permanent tooth this early", they said. They knocked one loose, a little early, I believe. Or the way Makenna chews and pulls on stuff with her teeth did? I was there I don't think they did anything wrong other than being single minded about getting x-rays. And I agreed with that approach and was trying to hold 'Kenna in a vice grip so they could do it. She didn't have to clamp that hard on things in her mouth. I really feel like a lousy father, but that is not new. I am putting no blame on the staff at the Tooth Fairy.

Hearing aids: no news there. No great advice to help us make her wear them. Makenna had another "behavioral hearing test", you know: hear a sound turn to look at the monkey in the box that lights up. She did better this time (with her behavior). She played along after a while. Nothing conclusive. Nothing changed. Response time given her didn't seem fitting and some subtle clues were missed, I think. Oh well. It was a hoot....again. I do believe we have the best clinical audiologist in Nebraska or any surrounding state. But he is used to dealing with kids with "hearing loss" they respond quickly or they don't based on what they hear. Makenna as a MR patient maybe heard that tone, at the volume, but why would she care to look for some monkey? She hates stuffed animals on principal, hates most animals generally. Why look to see what is going on again? You can't make her do it just because that is your rules for the game you want to play. Her game is different and you don't understand her rules either...so why wouldn't we dislike each other? Maybe I am reading to much into this?

Scoliosis: Some change. Last visit 6 months ago her curves were 5-7% better than this time. But her curve isn't as bad as once recorded. Maybe the brace is helping? Maybe the growth spurts are helping? Anyway the latest Cobb Measurements are; In brace: 41%/30% out of brace 60%/40%. As I remember it Makenna's highest readings, before bracing were 68% and something?. The readings 6 months ago were 53%/33% out of brace and 48%/25% in her brace. A 7 degree change in months is still significant. The lumbar curve is now the one that is progressing....That is bad news. But for all the families NOT dealing with scoliosis I would say: congratulations!...It gets blamed for more bad results from me, and Sheri, than it deserves: feeding, breathing, sleeping, crawling, walking and any bad behavior. I have a back that hurts. Maybe Makenna doesn't? She is not saying. So I have something to pin it on in my mind. Dr. Ginsburg was very sociable this time...that worries me. First hint of growing rods(surgery) mentioned by him. Maybe by the age of 6 or 7? I don't write this to be depressing. It is just time to start recording this for posterity. With witnesses.

Thanks for reading,

Clyde

We ARE alive!

clydegbryant151@hotmail.com (Clyde) — Sun, 20 Jul 2008 02:16:00 +0000

Hi everyone,

Makenna and Mom have been traveling some.... about 4000 miles. And Makenna was "very good" the whole time! And Sheri had fun even though that many days on the road takes its' toll. Yes, it has been forever since my last post. While they were gone I got a lot of work done. I didn't have the mindset to post. Anyway Sheri and Makenna have made it home from California, then Colorado. So I have a few photos to put up.

This is Austyn, 'Kenna and Ally. They are cousins that live in Colorado.

This is Alyx, another cousin in Colorado, and Makenna wearing her cap like a gang-banger" wanna-be.

I will try and be more regular with posts. I am trying to keep this about Makenna and as many realize...sometimes nothing changes for months and months....So I guess it is based on my ability to craft a story? Clyde

No news is good news?

clydegbryant151@hotmail.com (Clyde) — Tue, 10 Jun 2008 03:08:00 +0000

Sorry I haven't posted a new blog page in a while. It is not because things are going bad here, just the opposite. Makenna has been very healthy and happy. Sheri, Makenna and Sheri's parents went to California to visit one her sisters and watch her nephew graduate from high school, way to go BRIAN! I have been working 10 hour days on the job and spending my evenings tearing up some carpet, linoleum, vct tile and spongy sub floor to install new flooring in our dining room. So my hands have been too sore to type and my arms too tired to hold them to the keyboard. And yes, I am a whiner.
Kristy, a regular reader, my first "lurker" and a colleague from one of my other "side jobs" made the comment today that she was going to quit checking my blog because I am getting lazy, then tonight I got an email from Daan wondering if everything is OK with the family: so I had to write something. Things are good. I hope to post some photos of the girls trip when they get home in a week. But I really have little to share other than I am tired and the "warm fuzzies (money)" from all my work hasn't kicked in yet. I really get chatty after receiving a check for a completed job. I haven't finished anything in 3 weeks. I just keep struggling to keep all the bowling balls I am juggling in the air. (But it could be worse. I could have used the metaphor of running chain saws in my juggling.) The work is going good also. Just big jobs, taking a lot of energy. But I really appreciate people checking in and wondering if I am still alive. Thanks, Clyde

New Viewer

clydegbryant151@hotmail.com (Clyde) — Fri, 23 May 2008 13:51:00 +0000

I must acknowledge a new guest to my blog. He left a comment so he gets recognized. Thanks Ray. Ray is my brother and a little known fact, believe it or not, is we are twins. Obviously if you see us together you kinda figure it out. Ray is 4 minutes older than me and a little taller, I just happen to be standing on the sidewalk (so I look taller). Clyde is on the left, with the cap on. This photo was from August 2006. We had been scuba diving/spear fishing.

Dann wrote this to me, "Your brother Ray wrote a message in Puk's guestbook!!!
Soooooo kind of him!! He must be very proud of his little niece!" Clyde said, "I know Makenna really likes Ray and his wife Laura, and vise-versa. But I don't know how proud he is...he hasn't bought her a pony or anything that special yet."

Time for Some Nudity!

clydegbryant151@hotmail.com (Clyde) — Sun, 18 May 2008 23:48:00 +0000

No mater how well you think you can explain tube feeding, or a button to a lay person they always seem surprised when they see it. "Oh", many will say, "it actually goes right into her stomach?" Or something equally profound. Same with Makenna's feet. Her toes have looked like this since birth. I kept hoping she would grow and the feet would morph into something more normal. So she will probably never be a shoe model. Since this has turned in to anomalies 101 I want to add the uneven shoulders are ever present...scoliosis. A view from her back would show a large muscle/bone mass on her right side and a "skinny" left side. Her legs are uneven too (I tailor all her pants and never get them correct). But yeah, she sits great. She does not get in the sitting position by herself but she used to get herself out of this sitting position. It was never graceful and she won't do it anymore. Enough head bumps? Or more loss of ability to turn and put a hand back to help support/lower herself? She will sit until tired of it and throw a fit now to be allowed to roll. I suspect a lot of it is "learned helplessness" a document I will put on the website in the future. But I take most of the blame for that.

Makenna and Mataya

clydegbryant151@hotmail.com (Clyde) — Wed, 14 May 2008 14:05:00 +0000

Sheri is sharing a very fascinating story with the girls. Mataya, like most kids, was very fascinated with Makenna and the Kid Kart. She is the daughter of my niece, Marlo.

Photo's

clydegbryant151@hotmail.com (Clyde) — Mon, 12 May 2008 23:54:00 +0000

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.

clydegbryant151@hotmail.com (Clyde) — Mon, 12 May 2008 23:45:00 +0000

In case you don't believe what I say here is a photo of Makenna saying: "Get that camera out of my face!" She was really happy, laughing and smiling at the crowd and auctioneer then she turned to look at me and held this look til I put the camera down. The look changed so fast I couldn't get a smiling photo. And it changed just as fast when I put the camera down. But I like this photo. I get this look a lot. She doesn't think I am very funny, very often either. Clyde

Happy Mother's Day!!

clydegbryant151@hotmail.com (Clyde) — Fri, 09 May 2008 22:19:00 +0000

To all the Pierpont mom's, Undiagnosed mom's and all other Mom's I know: I salute you! But Pierpont Moms, diagnosed or not, especially. ( And doubly so for Makenna's Mom, Sheri! You probably deserve a badge of merit for everything you have dealt with from Makenna and me?)

Every mom deserves a salute. Mine more than most: Mary McVay, I wish you an extra special Mother's Day! I have never offered you thanks, publicly, for how you have stepped up and done all you can for Makenna....Until now. Don't feel like you can't do enough because what you have done is more than any 5 other people combined.

Here is a poem and honor to Mom's I liked. So I suppose no one else will? I had saved another poem for this occasion but the sappy, sugary, center of it melted on my keyboard and I chose this one instead. Clyde

Happy Mother's Day: Mothers Lie
By Lori Borgman

Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is. They just want to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more.She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).
Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more. Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn't close.The doctor's words took your breath away. It was just like the time at recess in the fourth grade when you didn't see the kick ball coming, and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.It didn't seem possible.
That didn't run in your family.
Could this really be happening in your lifetime?

There's no such thing as a perfect body.
Everybody will bear something at some time or another.
Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.

Mothers of children with disabilities live the limitations with them. Frankly, I don't know how you do it.
Sometimes you mothers scare me.
How you lift that kid in and out of the wheelchair twenty times a day.How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you're ordinary.
You snap, you bark, you bite.You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling,"Choose me, God. Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you.

From where I sit, you're way ahead of the pack.You've developed the strength of the draft horse while holding onto the delicacy of a daffodil.
You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability.You're a neighbor, a friend, a woman I pass at church and my sister-in-law.

You're a wonder!

Lori Borgman is a syndicated columnist and author of All Stressed Up and No Place To Go, her latest humor book now available wherever books are sold.

Tired of Waiting

clydegbryant151@hotmail.com (Clyde) — Thu, 08 May 2008 23:54:00 +0000

I often get anxious for things to happen. Usually that means I do something to push it along and that always backfires. But I take back what I said about being happy to wait for Makenna's AJGM article since it would include updates on boy 1 and 2 and include a new case on the East Coast of the USA. While I am anxious to read of the newest child I am more anxious to see what is written about 'Kenna. I don't expect to learn anything new...but they may slip and put some things in the article I have never heard before? I am trying not to bother the MMI team. But I also know, "the squeaky wheel gets the grease". Must be time to send some polite inquiries to some people? And I struggle with the polite part in many, many situations. I don't want to offend/alienate this group.

I recently bought a calender, poster and t-shirt from Despair.com. Somehow they cheer me up! The t-shirt has this on it:

This is the poster I bought. It pretty much explains my presence on the internet. And the fact I still get up and go to work every day. Oh and the whole husband/father aspect of my life. For example: "I DON'T KNOW WHY THE BUTTON IS STILL LEAKING! I have tried everything I know to do", said Clyde.

How can we make the Clinical diagnosis better?

clydegbryant151@hotmail.com (Clyde) — Tue, 29 Apr 2008 04:44:00 +0000

Matt says, " Williams foot pads don't look like they used to, they have split." There are twins in the Netherland's not getting a diagnosis because of no (minimal) pads? I actually went and looked at Makenna's feet tonight. Her feet do not look the same as they did in July, 2007, when the photos were taken for the AJMG article. There was a perhaps a brief window of opportunity that allowed us a diagnosis?

I do realize the importance of this unusual trait! But I wonder if there is a "window" for the medical professionals have to confirm this anomolie? Is it age related? Is it related to the BMI (body mass index) which I and most nurses can't figure out and plot. Don't get me wrong they are still there. And I think they are sensitive on 'Kenna. She doesn't like you messing with her feet and she really hates shoes... and even socks for that matter? But we have had a long two months of poor feeding. She has lost over 1 lb, and yet grown about 1 inch. And her feet look skinner too.

Do we only have kids that are labeled failure to thrive then pushed to the limit on feeding and then the planter lipomatosis becomes apparent? That probably is not it because Sheri was actually talking about those fatty places on 'Kenna's feet in the first month or two. Long before Makenna was getting adequate nutrition. The pads, on Makenna, are still there and intact but unless you were looking you would not notice them as too unusual today. This is especially true for Makenna because her "middle toe" on each foot is overlapped by another toe: Just like the boy from Ireland!! So all doctors, even geneticists, kinda get hung up on that anomaly. Just, as our orthopedist said, "Well, she will never be a sandal model". It was funnier at the time because I didn't realize how important feet could be to a clinical diagnosis". But his comment was funny then and it still is now to me, but not to Mom.

The point is what should the professional really look at? That is my new argument. Minimal planter lipomatosis? Signs of plantar lipomatosis? Or does it have to be as large as a robin's egg? Or as big as a bantam egg? I realize there may be 20 new syndromes coming out this year which I know nothing about and one may be very similar to Pierpont. So how specific must a trait be to be a trait to define that then? Pierpont is very similar to other syndromes except for the foot pad, being unique. And all the others that are close really didn't fit for us on more than one point. So we need to get off the foot pad a little and say: "there is a 'face' to Pierpont as well!" That and 10 other issues may qualify you, not just ugly feet ... nor little carpenter hands, ya think?

I know there is a face to Pierpont! When I look at the pictures of kids in our club my heart melts. I don't care if it was a boy in Minnesota, or Northern Ireland from 10 years ago or Catherine who is not yet labeled I say, "Makenna belongs in that club". The boy in The Netherland's has the look. I have stared at his photos for hours comparing similarities, he is adorable! The couple of photos of I have seen of William make me want to give him a great big hug. (I kinda miss the one where he was wearing the winter suit and hat.)
I am happy Prof. Brunner is working on a DNA solution! I assume it is years away from being conclusive, as all such matters usually are. But I am very pleased, indeed. And even then there will be kids without a genetic diagnosis but a real strong clinical diagnosis. Where do they go? Back in the "undiagnosed category"? Again, my college degree just says, "I don't paint". And I really want to avoid diagnosing! But my hobby says, "your kid looks pretty similar to my kid, wanna tell me more of your story?"