Friday, April 17, 2015

FANKS

Fanks for all the kind words, questions, ideas and offers of help you sent our way yesterday.  We are sending all of our blogville family a huge hug.  Today is the first day of Macey's journey.  She is getting fitted with her compression hose. Sigh......

Stella Rose and Momma

Thursday, April 16, 2015

ITS NOT FAIR

I have had lots of questions about what lymphedema is....I copied this.

The lymphatic system consists of the tissues and organs that produce and store cells that fight disease and infection. They include the bone marrow, thymus, lymph nodes and spleen, as well as the channels that carry lymph.

Most of us know about the circulation system that pumps blood from the heart to the rest of the body. A significant number of individuals, however, are not aware that the body also has a second circulation system - the lymphatic system.

There is a series of vessels and glands (lymph nodes) that comprise the lymphatic system. They are spread throughout the body, in a similar way to blood vessels.

The lymphatic system has three main functions:
  • Fighting infection - the lymphatic system transports a watery, clear fluid full of lymphocytes. Lymphocytes are infection-fighting cells. The white fluid is known as lymph.
  • Draining excess fluid - after blood has circulated through tissues it leaves fluids and proteins behind; these are waste products. The excess fluid is drained through tiny capillaries and into the lymphatic system. After filtering out bacteria, viruses and other undesirable substances or organisms, the clean fluid is then returned to the blood. This filtering is done by the lymphatic system.
  • Lipid (fat) absorption - the lymphatic system also absorbs lipids from the intestine and transports them to the blood.
A disruption to the lymphatic system can eventually undermine its ability to drain fluid properly, resulting in excess fluid (swelling) in parts of the body. Patients with lymphoma have a higher risk of infection complications because their lymphocytes cannot reach parts of the body where swelling occurs. Cellulitis, a type of bacterial skin infection, is a common infection for patients with lymphedema.
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Macey at two.

As a MOM of three girls, those three words were spoken several times in the "growing up years"....occasionally when they all get together I still here whispers of them in the wind....I am sure parents everywhere can identify with me.  Sometimes I think my three pugs would utter those three words at me if they could, but they find different ways to tell me "its not fair...."

Yesterday though I found myself listening to those words in my brain circle around most of the day, and into the evening.  I thought about my post today and I want to keep it positive, but then again, those words were the first thing I again thought of this morning.

Many of you --my family here in Blogville ---know yesterday was Macey's visit with her super duper smarter than the average bear Dr. Chen at the UNI of Iowa.  It was the first time I had ever met him, and I could tell he was very smart in his field and I could also tell he was feeling downtrodden when he walked into our room.

Macey didn't really notice because she was to busy talking and planning where we were going to lunch...lol......but her Mom and I did.

Here is a picture of your Lymphatic System.

Macey's picture from the bottom of her left foot to her knee
did not have any blue lines.  We were told Macey has Congenital Lymphedema, which means she was born without lymph glands in the lower part of her leg.  What was upsetting her doctor was because of that fact there would be no reason to do surgery (the one he specializes in) because there is nothing to reconnect and fix.  There is nothing there at all.

That is why her foot looked red after the radioactive dye test, because the dye could not travel up her leg to show area's of damage.
I asked him to repeat himself and explain what he had said at least two times, and then I just sat there rather stunned.  Her momma was much better at understanding this than me, and had prepared herself for this in case it was this type of Lymphedema.  Not me though, I am a fixer, and apparently Dr. Chen is a fixer also, so we were both bummed, and stunned, and angry. 

Not Macey though, she was just trying to figure out what kind of pancakes she was going to share with her sister at I-HOP.

He explained because she is only six and this is a chronic life long disease his goal right now is keeping it at this size, and being able to manage her comfort.  That will include physical theory, massage treatments that later her mom will learn and be able to do at home, and compression garments on her leg.  Ugh.  We will also have to monitor her exercise to see what makes her foot worse, and what helps it.  She is an active 6 year old, this will be fun...lol  He did stress that she always wear some sort of shoes so she does not cut her foot etc. because of negative factors.

The downside is this is a rare disease in children (we were told 19 children in 10 years statistically) so there are few medical personnel that know how to work with a child with this disease.  Yesterday we were told there were only two PT people in Iowa that work with Lymphedema adults, and no one that works with children.  The dr. said because Macey is so young he is hopeful that research will come up with medicine etc. within her lifetime to help control it better etc.

After we got home yesterday Macey's mom called the pharmacy to talk to them about her compression hose, our local pharmacy basically told her they could not help her, and suggested she call another pharmacy further away that deals with breast cancer survivors etc......so she did, the woman at first would not believe that a 6 year old needed this, until Kylei told her she has the prescription for them.  So Macey is going in on Friday to be measured.  It will take approx. 10 days to receive it, and for one hose it is $100.00  She will probably need more than one, cos I know she will be getting them dirty.  She will wear it from the morning time until she goes to bed.  She will probably handle it better than her grandma.  I was trying to think how to pretty them up.  One color, drab tan.  ugh.

Her mom is going to meet with the local dr. and suggest she contact Seattle Children's Hospital since they are one of the few places in the US that actually have a program for children with this disease.  I would think the PT people could contact them also.


The first thing her Momma said when we got back to the car, was that there are much worse things in the world that a child could have.  I agree, I know there are families here struggling with hurting children and adults and my heart goes out to them.  So we are looking for the silver lining, we know there is one, we just haven't found it yet.  We will.

Deb

Tuesday, April 14, 2015

TWO POSTS In ONE DAY

Mom said we will be doing two posts today because she will be gone tomorrow.  This is where she is going....

 

We are taking Macey back up to see the results of all of her tests yesterday....this is where she will go.....

She was super super brave yesterday.....braver than even the man next to her one of the nurses told her momma.  They had to put long needles between two of her toes in each foot and radioactive dye was in them.  Later when I talked to we talked to her Momma we tole Macey she could hide from the kids in the dark to see if she still glowed....she thought it was funny.  She took along her special rabbit and another special gift from Walter and Millie's Momma, and we believe these things along with all the POTP prayers helped her through the trying day.

This is her foot after the shots
You can see the right foot is smaller and just a little pink, but you can also see the difference in the size and redness of the left foot and ankle, and it went clear up her leg.  As you can see it is very hard to find shoes for her to wear.   I know you all will be thinking of her tomorrow, and on Thursday I will let you know what the brillants Doctor came up with for her treatment plan.
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Grandma is on the mend, thank you all for asking.  She is still getting MORE cards, last night she gots one from Charlie, and Grandpa just loved it so much.  He toles my mom on the phone they might be for Grandma but he rushes down to the mailbox each day.  Apparently, grandma caught a bad virus, and because her immunity is not to good right now it turned into a super bad virus, so yesterday she had to go in and have IV's all morning...but she got to come home in the late afternoon.  We are thankful she is on the mend. 

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Gussie is wearing his ORANGE bowtie that Ms. Ellen sent him because April is Awareness for Animal Cruelty.  It hurts our puggie hearts when we hear about an animal that has been mistreated in any way.  You all know we came from a bad place so we understand there are different levels of mistreatment, all causing scars you can see and scars you cannot.  Our Mom loves us, and that has helped heal our scars, and we try real hard to live in each moment.  WE wish all animals had the chance to our kind of lives and your kind of lives.

We will be back on Thursday.....Hugs Stella Rose, Maggie Mae and of course Angus McConnell

HEY SULLY---FROM MAGGIE

WELL our MOm stops by Grandma's this weekend and guess what is in the pile of hers mail....A CARD FROM SULLY hoping hers will be better, he acted all nicey and then he says,"TELL STELLA ROSE THERE IS A STALKER LAW IN TEXAS...."  

OH BAAHAHAHAHAHAH.....Sully you are so SILLY we fooled you GOOD, we as in my BEstest BesteST FRiend, otherwise known as Princess LEAH....cos it was US....hers and Me ...Margaret Mae ...otherwise known as Maggie Mae that has been stalking yous all over the West....NOT STELLA ROSE.....bahhahahahhaha.....

SO anyways Sully I called up an uncle of mine that lives in TEXAS and askeded him about that law and he called up a brother of his that lives in TEXAS and askeded him about this law, and he called up an friend of his, and askeded him about that law, and so we decided we would go to the HEAD  TEXAS RANGER and asked him about that law.....





Yes, WALKER, TEXAS RANGER and he said YES there is a stalker law in Texas but not for us, PUGS....we are EXEMPT and so are PRINCess from England.  


JIM, our baby giraffe,  toles us we should do this though.......


Maggie Mae and Princess Leah

Monday, April 13, 2015

MY VET VISIT

ON Saturday MOM and I got up early and picked up Marcus to go with me to the Vet to keep me company in the car.  

I was so excited cos Mom put on my pretty dress and harness with a beautiful little flower on it.  You will notice there are not true pictures because Marcus did not send them to my mom's facebook and now we cannot find them. 

The Eye Vet was about an hour away so by the time we got there I was pretty nervous from riding that far in the car.  Plus I had to sit in the back seat wif Marcus and I wanted to be wif my MOMMA helping drive.

When we got to the Eye Vet the first friend I faught I saw was Edward, Lily's brother.  I started jumping all around and said, " Hi Edward...you sure are a handsome big boy!"  And this little French Bulldog looked over at me, and said, " My name is Tucker...."  I still fink it was Edward.

Then I saw Shayla whose Momma takes beautiful desert and mountain pictures...I ran over to her, cos after all I am a friendly little pug, and once again said, " Hi Shayla...its me Stella Rose"....but Shayla was not feeling to good, and Marcus pointed out to me Shayla was a Sam......THEN MY NAME WAS CALLED.....

I liked the eye vet...he petted my fur, and said I was a pretty pug, and then he got this weird looking hand held instrument out of this box and he kept touching my eye with it.  At first I didn't care, but after 531 hours I got a little sick of it, and started squirming to get down. 

Finally he told me MOM my eye pressure in my right eye was around 19 and my eye pressure in my left eye was around 22.....all in the range of being JUST FINE!!   My momma was so happy and she even said, "are you sure..." and he tested me one more time.  Yepppp........

He toles my Mom that it is true I cannot hardly see anything, it is true I have very very dry eyes, even though momma puts special medicine in twice a day, and that will never change.  He said sometimes I will get ulcers, etc.....and he gave mom some new drops that just came out on the market to try for two months....it is supposed to help with the cloudiness.  They are for Gussie and me.  

Mom was so happy, Dad was so happy, everyone was so happy.  We hated that we had to wait till Monday to tell all of you. 

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Today is Macey's test day at the big University in Iowa City.  Her Daddy decided to go instead of my Mom since it would be a long day.  Mom is going to go on Wednesday when the results all come back and they here what  Macey's treatment plan is.   Macey got a special gift from Walter and Millie's mom in the mail.  Her momma is going to take pictures of her in it and we will put it on the blog this week.

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Grandma was very sick since Thursday.  At first they worried it was her "C" treatment medicine but now they think she had a very bad virus. She is going back to the Dr. today just to make sure.  We stopped by there on Saturday to check on her after my Vet visit. 

She showed us all her cards, and my Grandpa was excited because they got one in the mail from Texas while we were there.  It was from that little stinker Sully!    More about that later.......Stella Rose

Friday, April 10, 2015

RABBIT

Here is a picture of Macey's "Worry Rabbit" Daisy.

You cannot see the ears very well, they are flopped behind Macey's cheek, one arm is very short and one arm is very long, on her chest is a tiny metal key......I told Macey it is the key to my heart.   She is rather different looking isn't she....lol.......
deb

FINALLY FRIDAY

Last night was crazy dance night at our house, kids running in and out, boys practicing ball, and track and in the middle of it a storm which made our porch all slick and yucky.   Marcus was taking pictures with his phone for momma so she decided today to post them for you to see.

First there is McKenna in one of her dance outfits for the recital coming up next month.  She just turned 10.





 The glasses go with the theme of the dance.


For some reason no one got a picture of Macey so we are putting one on here where she is relaxing with her grumpy cat stuffie she got at the hospital.  Monday is her big day of tests.  P.S. Macey loved her rabbit and named it Daisy.  We finks it is a perfect name for her.  We are waiting on Marcus to send us the picture.



Here is Dad sitting wif us out on the porch.  Miraculously as the evening started to move along the porch started to dry off.  That made Mom very happy....less slime tracking into the house.

Here is me...Stella Rose, do you have any green beans for me like you promised Marcus???  Tomorrow I go see the eye doc.

Here is big boy Gussie.....do you think he looks like ME?   Remember we have the same momma.  He weighs about 21 lbs now....and I weigh 19.  He is taller and more muscular than me.

And her is Maggie.  She is trying her best to be good to me, cos she got in a fight wif me the other night, and MOM toles her she had better straighten her attitude up!!!  Maggie weighs around 20 lbs...but is shorter than Gussie.  I think under that face she is making fun of Mom cos that is her personality.  She is a mean girl.

Well, our thoughts and prayers are with all our friends out here in blogville who are struggling with family health issues.  We have kept you all in our prayers.  Lots of POTP coming from our house.

Stella Rose and Momma