Some News

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

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!

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?

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

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!

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

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.