Another Costume

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

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

This is the best speech you will ever hear.

Birthday Girl

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

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