Thursday, August 28, 2008

Plant hair

Here lately, Luke has been scooting his butt over to plants. Tall ones. Then, he strategically positions himself right under them and just sits there and laughs.

He favorite thing to do is pick flowers and hold the flower, or tug at funky looking plant stems etc. ...pretty much anything that is planted in a pot or the ground is a playtoy for him.

Last season I posted where Luke was in Jon's garden and tearing up stuff having a hay day. Well, this season he's a little more polite about it and just stares and laughs. It's very sweet. He wants me to point and say "Plant", "Flower", "green stem". :)

Daddy always says to Luke "be nice to the green people son". It cracks me up. Jon is a green people lover. Not me!

So...I call this picture below "Plant hair". I even took some video where I say "Plant hair" about 50x. It's quite annoying after reviewing it. lol. Oh well, it's called mommy baby time. We get bored and start scooting over to other neighbors yards. So fun. (video below)

p.s. Sorry to the neighbor where Luke messes up your rock bed. I really feel bad about it. I try to put it back together...but I saw where you were not happy with my results from a distance. (oops) sorry. I don't talk to this neighbor nor do I know her name. And, I'm certain she does not know my blog..however, sorry strange neighbor?! k?

Monday, August 25, 2008

Vespa riding baby!

Oh gracious. I know, I know. Brace yourself Lulu. Luke wanted to ride with daddy on his Vespa so, so, so bad. Everytime he saw Jon riding by he would scream and cry. So, we broke down and thought...hmmm, what can we do?

I ran in the house and found his 'walking wings' strap holder and ran outside. Me/Jon got his bike clip and clipped the back and it was the perfect harness for our Vespa baby. We call it "Vespa rigged up baby harness".

I fully understand this is ridiculous and not the safest thing in the world. But, Jon only goes down the street and Luke is in heaven!! below. I must confess...I typically would not advocate for this type of adventure..but after a very intensely boring day for Luke....we broke down. We so badly want him to experience life and adventure. Yep...we are risk takers at it's finest. (one thing me/Jon both have in common for sure) :) Enjoy loved ones.

Saturday, August 23, 2008

Birthday fun for Uncle Josh

Ok! The above 2 family pictures of me/Luke/Jon are a huge milestone for us. Last night for the first time Luke started to SMILE AT THE CAMERA! NO kidding! This truly deserves a post on it's own to which I still might do! Aunt Lisa would say "Luke smile...." AND he would look at her and smile really big! At first, we thought it was coincidental....but then we tested him like 3x! He did it all 3x! It was amazing!!! I stopped and had a serious moment at the table while gasping at the photo's on the camera. Me/Jonathan were very touched and the entire table was so happy as well. Our little man smiles at the camera now! Urgent note: Photo shoot needs to happen Lisa, Ericka, April! Like...NOW! ya'll. We had a blast! A

Update: ...last night we celebrated Joshy's bday at Babe's chicken! So fun! If you ever have the privilege of meeting my little're in for a real treat! He is the funniest person you'll ever, ever meet. (I'm very serious!) Josh turned 20. Wow! I can't believe it. I remember holding this little munchkin and changing his diapers. No..I'm not kidding. I really did.

So..Happy Birthday Bubba! We love you greatly!

Here's Joshy with his Babe Chicken hat on. They made him get up and dance. So funny.

The following pics are Joshy/Ronya (his girlfriend) and our family party guests! Enjoy!

Friday, August 8, 2008

A Cms friend from Athens, Greece!

Hi everyone, meet Constantine below. She's 7yrs old from Athens, Greece and has CMS.

Her Aunt Yiota speaks and writes in English and sent me the following email about Constantine. She's a precious little girl and so very loved!

FROM YIOTA (a cut/paste of her email to me)
I am very happy to hear from you.
I believe that is very important for all of us to be in touch, support each other, exchange information.
There is not really much information for CMS, most doctors don't even know it and most of the times we fell very lonely. I'm sure you understand all this.
We can not understand how it came. No one in the family has it, at from so back relatives can remember. I hope that when we have news on her DNA things will clear up for her and all members of the family.
Constantine is on Mestinon, she takes it every 3, 31/2 hours (not during sleep). I wouldn't say that it always work. It seems that if she goes through a bad period nothing really helps.
Yes, when she is sick ( temperature, flu) she becomes weaker. She also had some light form of asthma, and until last year she used to get sick very often, do musks etc. She would get everything that was going around in the school. What helped us on this is that we started Homeopathy. I don't know if you ever heard of it (its an Alternative medicine theory), but we really saw a big difference. Her health has improved very much and she deals with colds much better.
To give an example, this year (from September) she got sick 2 times, us to the last 2 years that she would be in bed 6 to 7 times.
She goes to regular school, 1st great. She is very clever and has an artistic talent. For the moment she doesn't use a wheelchair. She can walk, but short distances and she needs help with stairs. When she is good she can do it but herself. Other kids are very supportive, but she compares herself with the other children and she comes up with all these, sometime difficult to answer questions.

This email is at work and I am here every day (M-F) from 11 to 19 local time.
Nice talking to you.
I am sending you some pictures to see Constantine and her mom.

Very very nice talking to you.
We will chating for sure.
Kisses to Luke
and of course You, for all you do for him.


Another CMS friend...Jasmine

Meet Jasmine below. Her mom Kay contacted me and sent me her precious little girls' picture. Kay said that Luke's birth story and Jasmine's birth story were so alike. I was so thankful she wrote me! Here's Jasmine's pictures that her mom sent me and the email Kay sent me below explaining her story.

FROM KAY (mom to Jasmine) This is a cut/paste from an email sent to me:
Thank you for the response to the questions as that is very helpful and so glad that Luke doesn't have problems with his eyes and jaw.

It might be easier to tell you all about Jasmine from start to finish (i hope you like reading lol!!)

Jasmine was born on the 11/12/04 after a prolonged (and very painful) labor, as soon as she was out she had multiple fits and they gave her a muscle relaxant. its a wonder she survived that!!the med knocked her out cold for two weeks. all we were told was that she had extremely low muscle tone. she just layed there in an incubator, ng fed and had oxygen. after the two weeks she opened her little eyes for a few minutes then i don't remember her being awake much. they let us take her home after 18 days that was when we was in a living nightmare 24/7. i felt like a robot the first 3 months cant remember much. husband (paul) was at work and i was very stressed with no support.jasmine would be sick constantly then stopped breathing good job i have the sense not to leave her for 1 minute or she would be dead now.i know i can be dramatic but i was only 20 yrs old and had just had my first baby i didnt know what to expect but i knew this was not right. but after i had resuscitated her and phoned the hospital they would tell me to bring her in and put me in a room on my own and just tell me i was being dramatic then send me home. i just couldn't get it through to them that there was something gravely wrong. anyway it went like that for 3 months, then it all changed when i could not resuscitate her at all had to call an ambulance, was rushed to hospital where they worked on her for hours her heart stopped so they put a insulin jab in it and was bagging her for a long time. we live in lincoln and was at that hospital but it wasn't good enough so the recovery team came from sheffield to take her there, they didn't think she would survive the journey, but thank god she did. things changed dramatically from there she was on the ventilator for weeks and they could not get her off it so they decided to put a tracheotomy in. time passed she didn't sit up, hold her head, talk or nothing the first year she just layed there. she couldnt even swallow her own secretions. the only great doctor i have met was dr ritty in sheffield he did an nerve test on her and then she was diagnosed with cms. Finally we knew what we were up against, then a new problem, none of the doctors knew anything about it and could give us no i have just always gone with the instincts that mother nature gave me, and never been wrong yet. along the way she has had nissan fundaplaction and a muscle biopsy and a g -button.she really changed when she had the mestinon, big wide eyed although still straying. went to the loo everyday (i think we are the only mums that appreciate that) smiled instantly was the best moment ever, i cried. she walked when she was 2 that was ace and she has been storming on since then. and when she had the trach removed in December that was it, the best moment in my life she laughed and said oh no because her nappy fell to her ankles. and really it has gone from there we have broken from this world of silence to laughing everyday at the things she says!! she doesn't eat at all she never has, i was told never to try anything because she was so ill all the time, but that is one expertise i know nothing about, and here in the uk there is a shortage of speech therapists. but she can drink a little but will only have water (well at least she is healthy) she freaks out about her g button moving does luke? i have had to strap it down so it doesn't move or she complains all day. This the first time i have written her "story"

lots of love kay, paul jasmine and isabelle her little sister xxxx p.s. you can add the pictures to your blog i don't mind love to all
KAY (mom to Jasmine)

Another CMS friend contacted me!

Hi everyone, guess what! Another CMS friend!

Meet Denise! She has the Dok-7 gene mutation and is 36 years old.

She's from Cape Breton Island, Nova Scotia. It is located on the east coast of Canada.

She located me on the Facebook CMS forum that has been developed.

Here is her email to me and some of her story. She's quite an amazing lady!

FROM DENISE (this is a cut/paste from her email): CMS is so rare that it is important to share information to anyone we can! That is so interesesting about the lady in the UK whose son was just diagnosed with DOK-7! Dr. Engel was saying that Ephedrine can work but the Albuterol seems to be more effective and less costly! He said that aside from missing this enzyme(DOK-7??) a lot of the receptors on our muscles are either missing or jumbled up together(trash). I really don't have a good clear understanding of it yet b/c it is so new and I am finding it hard to get good info on it. Dr.Engel is going to send us an article on it soon. He also took a biopsy from my brother and I b/c he has never saw more than one person in one family with CMS that all have such varying degrees of weakness! I was saying to my sister, Louise(unnaffected) that we were like lab rats caught in a maze. They were really puzzled by us and wanted to figure things out! We were glad to do whatever they wanted and so grateful to have a name for our muscle problem after all this time. The amazing thing for us was that there was this medication that could and did help us.(never thought there was such a thing) I still can't really believe it. It is all so surreal! My brother, Hughie(also affected) was joking to the surgeon after the biopsy that Dr. Engel(present during biopsy) was like a kid in a candy store running off with the muscle samples to the lab! lol He is dedicated, I tell ya!
Dr.Engel did say that the chances of our having children with CMS would be extremely rare, as you said. My mother and father both are carriers and are unnaffected themselves. (recessive gene) There are nine kids in my family and 3 of us are affected. I am the second youngest child.(36yrs) Hughie, who is also affected is 42 yrs. He gets along well and is an accountant for Nova Scotia Power here. He is less affected than myself. He has been on prednisone(steroid) for about 18 yrs and found that it helped him physically. (I tried it when I was 18 yrs old and it did nothing for me)He is going to ween off them now that he is on the Albuterol. He always found that he would weaken when he went off the prednisone. He said that it was a choice of quality of life over quantity. He chose quality. He is a healthy guy though. My sister, Darlene(41yrs) is the least affected of the three of us. It is very difficult to notice that there is anything wrong with her. She has found that after having each child(2 healthy kids) she weakened more. Both Hughie and Dar have benefitted greatly from the Albuterol like myself.

I am the most affected by CMS. In the last 5 yrs or so I was really finding it difficult to get around. Some days it was even too hard to walk out to the car. I hated going anyway b/c it was such an effort. I also didn't want my Dad, who is 75 yrs old now, dragging me around. He is too old for that, even though he is quite fit for his age. Now I am out and about all the time. (under my own steam)My best friend has just moved back home from Ontario about 1 year ago and I never even went to her house until recently b/c I didn't have the energy for climbing her steps. Now I am popping in there all the time. It is like I have my life back again and I still get up every morning and wonder if I will still feel good. I went to the movies the other day for the first time in about 3 yrs.It sometimes feels like it is too good to last. It is hard to get used too. It seemed like we went to the Mayo and discovered we had CMS at just the right time b/c the type we had was only recently discovered. I guess it was meant to be. I am sooo thankful!

About our birth, everything seemed to go along smoothly(as smoothly as birth goes that is) and our breathing was fine. The first time Mom noticed that there was a problem was when we were starting to crawl around. We couldn't lift our heads up. Mom said Hughie would crawl and drag his head along the floor. We seemed to meet most normal milestones but you could pretty much knock us over with a feather.(lots of bangs and bruises) Thank God I have a head like a rock! haha We never really ran except in an awkward kind of jog. I had to have rods put in my back when I turned ten because of scoliosis. Hughie and Darlene avoided this. Aside from that, I was never in the hospital(or Hughie or Dar)until I was 29 yrs old and got a very severe pneumonia in both lungs. It was touch and go there for a while but now I am more aware of colds and viruses. I find that I have a good cough but when I get really sick and worn out that I get so weak that I can't cough effetively and this is when I get into trouble.

Keep in touch and take care!


Target..take cash..or don't go!!

Hi ya'll,

Field trip: Went to Target late yesterday with Lukester.

Private reality: Went to buy 1 thing. Came out with quadruple the stuff. Why? oh why do I do this? Target is the enemy! LOL

However, Luke loves this store. He gets so excited about riding in the basket. It's so cute. I actually enjoy this more than the shopping part because it's so cute.

Ok, first off. My intention was to buy these Yogurt drinks. Apparently...A hot commodity. I can't find them in 2 Walmarts and I just surrendered and drove to Target. After all, they always have it! The drinks are key to Luke as they are "nectar" consistency and that's all he can drink without aspirating. At least until we do our next swallow study. I can't wait for that!

On a good day..the total purchase cost would have been $7.80. However, it was not a good day in Target. Not sure what happened. It's crazy. I guess I'm like Aunt Ericka. She's got a Target problem as well. (is that ok I revealed that on blogger E?) I'm sure she's ok with it. :)

At any rate, the baby, baby toys are right next to the maternity clothes and I couldn't help myself. So, I stroll around and see baby DOLLS! Oh goodness. Something happened. I've sworn not to buy anything until Baby Hannah comes but what's an emotional pregnant momma having a girl supposed to do? I wanted to be the first person to buy our little angel her 1st baby doll. I don't know why? I just wanted to be the first one. goes! Behold..Hannah's first baby doll. Isn't she cute? Her hair is funky on top but I love it. It's got short bangs and something curly and poofy on top. Just like her momma! I haven't decided if I should take her out of the box. I'm awaiting that tug! :)

Then, of course, I had to get Lukester something that I've been thinking about for awhile. I'll go into this more later but his kid is addicted to this little video game. I actually had to hide it this am due to the overwhelming force it took on him last night. He played it for 2 hours! I was freaked out. It's a very innocent and fun game but I think the appeal was that he could hold it and touch the screen. It's not even age appropriate and he loved it! Whoohoo! I think he's going to be like daddy....a computer techie. It was adorable.
Lastly----my son this am. SEE HIS FACE in the below picture?!! TRANSLATION: MOM! It's 7:30am....get that dang camera away from my face! AND THE FLASH! HOW COULD YOU MOM!

Hilarious. These are the side affects to being in photography and using your children to test shoot on all the time. Note to self: Don't do it! It taints them and they will run when you pull the camera out! sweet annoyed child's face below.

Happy Friday blog family! We love you! A

p.s. Note the Panda Bear he's holding. It's his newest animal addition. He loves, loves these little animals. So much so, I think I'm going to make his birthday theme....zoo animals. It's truly his thing. He even had to hold an animal in the car at all times now. God forbid we leave the house with the giraffe, lion and many others.

P.s.s. I pants. I need help. However, notice his says "Luke". Krista's cousin made this for Luke and I love it. I'm going to get her to make one for Hannah and Luke..same color. It's precious! Thanks so much Callie! I love it!