The dog days of summer!

Mr. Baby-Sweats-A-Lot has made a reappearance!

Knoah is a bucket of wetness lately. I think as the summer goes on, the less clothing he will be wearing. You already know our last name…now we see why the station masters gave the immigrants the names they did when people were arriving on Ellis Island.

I am holding back turning on the AC because when the AC gets turned on so does the electric company, so I am going to play bashful with them.

Knoah is managing well, but still, I wish I could help him.

The LPA Conference is coming up soon! I am so excited!! We have never been on “vacation”, so this is going to be a vacation for us! I am selling some things to help pad our expenses. With the recent stroller buy, I used the money I had been saving for the conference to buy the stroller, but in turn I knew I could re-coup some of that money by auctioning off one of my beloved Louis Vuitton’s.

Years ago, BK (Before Knoah) I had a pretty expensive habit of buying and selling Louis Vuitton’s. I am not talking the fake, knock-offs, I bought REAL. I have become quite the proficient shopping when it comes to telling a real Louis Vuitton from a fake. There are dead giveaways. Not to mention selling fakes are illegal.

Back to the subject, so if you know anyone who is in the market for a cute, authentic Louis Vuitton, send them this way. *Shameless promotion*

I really need to sell it and I know my feedback may hurt me. Remember when the simple T & A surgery took place? You know, the one that started out well, but ended us up in the hospital with the flu?

Ya, that one. Well at the time I was helping my neighbor sell some of their books. Apparently, one of the books was listed twice and then to top it off, I couldn’t respond to the buyers letting them know I wasn’t available to clear up the confusion or mail the book. So, I was hit with a double negative. Which I am fine with. I ended up in the end, pulling all the books because I didn’t want to chance it happening again.

So much for thinking life was on track. LOL

Any who, it’s HOT, we are sweaty and life is about to get crazy for the summer!

Knoah’s ARC update

Andrea, age 4, Undiagnoised Dwarfism

Mandy, mom to Andrea sent me an email sharing Andrea’s happenings.

I wanted to share them here:

Andrea is getting big. She was a micro preemie born at 27 weeks.
She is 4 now. She goes to an Early Intervention Preschool, it is 3 half days a week. She will be doing the same thing next year. She isn’t quite ready to go to K4. Not because of her dwarfism . It is because of her maturity level. Her attention span isn’t quite where it should be.

Her health is good. Just the minor colds that go with the weather. She is still not measuring on the growth chart. Because she is undiagnosed typeof dwarfism they don’t chart her on the achon chart. She is measured on the regular growth chart.

We have an appointment to see Dr. Bober and Dr. Mackenzie in September. We are hoping to get a diagnosis then.

Andrea loves to color, being read to, and eating. Pizza is her favorite food and her favorite place to eat is Pizza Hut!.

Isn’t she a doll! Actually funny story, Mandy and I crossed paths several years ago. My husband and her husband worked together. We met up again after we had Knoah! They have sinced moved out of state, but we keep in touch often through email. Funny that someone we knew before we became POLP would have such close ties to each other!!

New Blog Alert!

I have been slacking in the department of notifing everyone of new blogs…

they have been popping up so quickly and with my head in the clouds, here they are:

Destini, mom to Tay and Trace blogs about her son and daughter and the fun they have. Trace has Achondroplasia and has the BIGGEST blue eyes!

Keeping up with the Kunz’s pays tribute to Andrea’s family! Andrea is mom to four beautiful children, one who has Hypoachonroplasia.

Stop by to welcome them to the community!!!

To date there are 17 18 new blogs about our kids!!! I am so proud!!!!!

Edited: See, in the clouds….

Sonya, mom to Blake, JJ and Cameron, has joined us!!! JJ or Jaden, has Hypochondroplasia. Sonya lives just a few minutes up the road from us and we’ll be getting together real soon!!

Stop by and give her a BIG HI!!!

Also, if you come across any dead links, please let me know 😉

Accomplishments!….Or not!

I am very happy to report that the website that I had posted several weeks ago is OFFICIALLY DOWN!!!!

With some “PI” work, I forwarded Gary Arnold, V.P of Public Relations of LPA the information regarding who owned the site.

Please give him a round of applause for the a job WELL DONE!!!

Thank you Gary!!

*Edited: And, it’s back up. So, IF you feel the need to contact the administrator, please contact:
Registrant:

FILM FICTION PRODUCTIONS

1413 N EDGEMONT ST #3
LOS ANGELES, California 90027
United States

Registered through: GoDaddy.com, Inc. (http://www.godaddy.com)
Domain Name: M***.COM
Created on: 24-May-06
Expires on: 24-May-09
Last Updated on: 29-Oct-07

Administrative Contact:
WHORTON, WOODY nisage@gmail.com
FILM FICTION PRODUCTIONS
1413 N EDGEMONT ST #3
LOS ANGELES, California 90027
United States
3104245809

Technical Contact:
WHORTON, WOODY nisage@gmail.com
FILM FICTION PRODUCTIONS
1413 N EDGEMONT ST #3
LOS ANGELES, California 90027
United States
3104245809

Domain servers in listed order:
NS27.DOMAINCONTROL.COM
NS28.DOMAINCONTROL.COM

Registry Status: clientDeleteProhibited
Registry Status: clientRenewProhibited
Registry Status: clientTransferProhibited
Registry Status: clientUpdateProhibited

If your picture was used without your permission, please contact Gary Arnold at GArnold@accessliving.org

Websites like this are not funny, creative, in good taste, humorous or just for fun.

Edited AGAIN: I took the link out BECAUSE I don’t want to give this insensitive insert word of choice anymore publicity.

New Blog Alert!!!

Trisha, mom to Caden has ventured into the blogging world!!

Please go over and say “Hi!” to Trisha and Caden!!

Caden and his mommy!

Way to grow Knoah!!!

We are back from Grand Rapids!

Knoah’s appointment went really well, but I guess it also could depend who you asked. If you ask Knoah, I am sure he’ll claim he was some how “tortured”. The amount of screaming he did from the time we walked into the examination room till about 10 minutes before we left, was enough to scare the little 3 year old in the lobby.

Dr. Pauli’s assessment of Knoah’s progress is over-all wonderful. He does agree with the Neurosurgeon’s (Dr. M.) treatment and his approach to handling Knoah’s fluid in his head. He appreciates Dr. M’s conservative medical opinion and that Dr. M isn’t rushing to treat Knoah’s Hydrocephalus. He does agree that as soon as we get the results from the Neuro-Opthamologists that it be forwarded to him. Since shunting is pretty dire, we need to be fully prepared. If the eye doctor’s results come back negative for pressure, we could be in the home stretch that Knoah’s head is fine. If the results are inconclusive, we could opt to place a pressure monitor in his head for a few days (which means another hospital stay) to see what happens. Which if you check out the link…we would not look forward too.

We arrived home today to find out his appointment with the eye doctor is Monday, so we will find out sooner than we thought!

Dr. Pauli is impressed with Knoah’s brace. Although, it’s not the traditional brace used for children with Achondroplasia, it will work. We have found thought, there are some issues with the brace. Since adding the pad in the back, Knoah is A LOT more uncomfortable than before. Yesterday, on the way up to Grand Rapids, he did nothing but fuss. He was so uncomfortable, he didn’t sleep the whole way up there. About 20 minutes out, I had to take the brace off of him, we could stand to hear him whimper anymore.

Once we were at the appointment and we took the brace off again, it was evident something is going on. Knoah had pinch marks on either side of his body and was extremely red. Dr. Pauli thinks that the pad they inserted may be a little too aggressive right now. He says that with the additional counter-pressure, it has caused the brace to shift and it isn’t fitting as well as it was before, so it is pinching and rubbing against his skin. I have to call the Orthotist to get Knoah in so they can make the corrections.

We talked about Knoah’s “spells”. He asked about them and what I thought and I replied “He keeps breathing!” “It’s amazing, he continues to breath!”. He has a nice chuckle from that.

Knoah is very proportionate for his height and weight. His head circumference is 53.4 Cm’s, which is about 60th percentile and his length is 69 Cm’s, which is about 27 inches. He is a good weight and is growing as expected.

Dr. Pauli was VERY impressed with Knoah’s flexibility. 😉 We all know how flexible he is and Pauli can see how that hurts him with regards to walking. Because he has excessive hip flexion, it is going to be harder for Knoah to remain upright for very long. His hips and pelvis, sort of shifts on him, so he will have to work harder to keep his balance. Knoah’s tone looks good and he is very strong, which is a good sign Neurologically. There were no other concerns and we are breathing a huge sigh of relief! It seems Knoah’s complications relating to his dwarfism appear to be just about done, for now! 🙂

All in all, it was a good visit! We are very happy with the way Knoah is growing, in more ways than one! THANK YOU DR. PAULI FOR YOUR DEDICATION TO OUR KIDS!!! I CAN’T FORGET CASEY. SHE IS ALWAYS ON TOP OF THINGS!!!! THANK YOU!!!

Dr. Pauli and Knoah

While we were there, we saw an old family friend! I have known Larry for almost 20 years! He is a retired State Trooper and is now teaching. We sat and talked for over 3 hours.

Larry and Knoah

Look, the Tiger’s just got another run!

We met him at a place called Uno. I must confess…(off topic, this has NOTHING to do with dwarfism)….their Chicken Spanioccoli is TOO DIE FOR!!!
If anyone wants to make this for me every night for dinner, I would be eternally grateful!!!

Anyways, we had a GREAT time and I love seeing Larry when we have a doctor’s appointment!

Dr. Pauli wants to see Knoah in about 9 months provided nothing drastic happens with the eye doctor. So we will see him again when Knoah is 2 years old. He did provide some insight into Knoah’s walking. He said he should start walking within 6 months. Which is about the right time for the typical Achondroplastic child. So be on the look out for a little, brown haired, blue eyed toddler trying to run you down.

I think everything will be okay! The scare we had from January to July 07 may not of been related to his dwarfism. *Head shaking*, we’ll have to see.

So, here are more pictures from our trip!

Knoah killed the lemon wedge. Have I ever told you how much he LOVES lemons? Pucker.

Yes, he really does enjoy lemons….

Look at his finger grip! I am so proud!!!

It wasn’t ME!! Look at my face, I’m not lying!!

You gotta have friends….

Yesterday was FANTASTIC!!!

We ate, talked, laughed, compared notes about our little ones, talked about the siblings, it was a great time!

First to arrive was Catie and her family! This is Catie with Hannah. Hannah is 3 years old and is a doll! She found a quick friend in my Hannah (more on that later!) Catie and her family have just moved to the area, so I know we’ll be seeing more of them! Click on Catie’s highlight to go to her blog!!!

Within seconds, Cat, Owen and Jennifer arrived!! Owen displayed his newly acquired skill of walking!! He is getting so big and weighs close to 22 pounds!

Then arrived Sarah and her family!! Kaela was ready to go! Right onto the floor she went and started to socialize with the other kids! Kaela’s big blue eyes look at you with curiosity! She is too precious! Mommy even fudged a bit and took her brace off so she move around easier! Once it was off, there she went!!

Then arrived Sue and her family! Adian is growing just wonderfully! He is pulling himself up and cruising around the furniture! He is drinking from a sippy cup and recieved a haircut before making his grand appearance here!

This is the circle of friends!

Now for Hannah A. and Hannah B.. They played tea party, beauty salon and watch a movie!! Hannah A. (mine) and Hannah B. (Catie’s) got along wonderfully!! A girly-girl for a girly-girl! The perfect mixed for a long friendship!

Last, but not least! Knoah certainly didn’t pass the day without his candid photo opportunity…

I am so blessed to have these wonderful people around us! Knoah is the LUCKIEST boy in the world to have so many great friend’s!!!

I wanted too add, but I ran off to church, that Char called Friday night to wish us a good time!! I am a lucky mom to have such great friends!!

Thank you!!!

NEW BLOG ALERT!!

I am SO excited with the number of blogs everyone is doing!! I LOVE that a new generation of parents of Little People are so willing to not only show off their special children, but help educate the public about dwarfism. Sharing intimate details about their families and let people in.

I think it is FANTASTIC!!!! Thank you parents!!! I am very proud of each and everyone of you!!

Our newest addition to the blogging world is Jill! Jill is mom to two wondeful children, her youngest having Achondroplasia. JD is a handsome little boy with a great sense of humor! Please stop by and give her a BIG hug and Welcome!!

Annathan

Oh HAPPY Day!

IT’S FINALLY SPRING!!!!!!! YEAH!!!!!!

I am SO relived! I can’t stand Winter. Winter in my book has no place in our lives, it only complicates things, so now that it’s over with all I can say is YEAH!!!!!

I took Knoah to his Neurosurgeon appointment today and things look well! I won’t say good, because we have to see a Pediatric Opthamologist. Dr. M wants to make sure there isn’t increased pressure in Knoah’s head. He is concerned with the veins you can see on Knoah’s forehead. Although he has had them for a while, he wants to make sure there isn’t another cause. If the eye doctor sees an indicator for increased pressure, he said “It is obvious we will have to take action. We will either have to shunt him or place a pressure monitor in to monitor the pressure, but on paper, Knoah looks okay.”

At least he is being conservative and not rushing Knoah into surgery. I appreciate that and I told him so. Knoah’s head circumference is evening out. His last appointment his curve was headed upward which is not good, but today, he was leveling out, so that is a good sign! I also asked for a referral to see a Neurologist. With the latest issue, that could explain why Knoah has mild encephalopathy (ĕn-sĕf’ə-lŏp’ə-thē). He has since birth, but caught it when he was 7 weeks. Actually, in all honesty, it could explain why Knoah has had a lot of the issues he has had. Encephalopathy is basically slowing of the brain waves. Many children with encephalopathy experience slower cognitive development that other children. Since his Achondroplasia doesn’t affect his mental capacity, he should be on target for his age as most children.

The 17th month
By the end of this month, your toddler:

… should be able to:

use two words – NO
drink from a cup – WORKING ON
… will probably be able to:

build a tower of two cubes – YES
… may possibly be able to:

walk up steps – WALK, NO, CRAWL, YES
remove an article of clothing – NO
‘feed’ a doll – NO
… may even be able to:

build a tower of four cubes -WORKING ON
identify two items in a picture by pointing -NO
combine words – NO
throw a ball overhand – NO
speak and be understood half the time – NO

So, many factor come into play with the development of children with Achondroplasia. Speech is usually an issue because they have large tongues. The problem with Knoah is, he isn’t even attempting to say any words. He says “Mama, Dada, Oh-oh”. Combining his words? I think not.

He does know some sign language, like milk, more, food. That is a slow process.

So, we have to wait to get the appointment and see what they say.

This week is full of appointments. Yesterday he received his Synagis shot, today the Neurosurgeon, Wed we see the Orthopeadic Surgeon, Thurs we see the Orthotist to insert the pad for his kyhopsis. Friday I think is quiet, but Saturday is a BIG DAY!

Saturday, we are having a PARTY!! Owen, Kaela, Adian and Hannah are going to be here! We are going to talk about the LPA National Conference and figure out when it is best for us all to go!

This year, since the conference is in our home state, we all want to go, we all also want to get together for a visit and see all of the beautiful babies!!

Next week we see Dr. Pauli! We will be staying at the Renucci house again. I am so thankful that they are there to help families with lodging!! It is also affordable! We are driving up with Sue and her family to help with gas money.

Busy, Busy, Busy!!

I better finish preparing!! It’s going to be loads of fun!!

New Blog Alert!!

Jaime, from CA has started her own blog! It features her 3 year old daughter Caitlyn, who is simple BEAUTIFUL! Caitlyn was born with Achondroplasia.

Please pop over to greet them HELLO!!!

Jaime and Caitlyn