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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Thursday, March 28, 2013

Operation retrieval!!!

What a crazy day!!! I got a call from my neighbor who has the cutest little boy. This little boy is extra special because of his autism. I had the privilege of being his primary teacher for a little while. I just love him so much. He sure can be a busy handful. There are days when I am sure I would have lost patience with him, for some reason Missy and Jeff have never ending patience..
Anyway, come to find out, their little guy has decided that he is done with his sisters IPod and chucks it over the fence. When his mommy goes to check on him, he is standing on top of some patio chairs trying to see the iPod. She trys the neighbors but they aren't home. I have numbers but find out that everything is locked up tight and they won't be able to help AND they have a big doggy back there. We decide that we can't leave the IPod back there because it might rain or snow. Electronics and water are not exactly friends. I have one of those grabby things and I head over for operation retrieval. When I get there we see that it is about 4 yards from the fence (man he has a great arm) my little grabby thing is not even gunna cut it. We have to get our Macgyver skills on and attach a rake to a telescoping pole and drag the iPod closer. All the while I am trying to sweet talk the doggy into not tearing me apart as he defends his home. We get it to the fence, we have to disassemble the dragging device, then use the pole and rake separately to push it onto the teeth of the rake and hoist it up.. It came back dirty and a little scratched but working !
I came home only to find Ry in tears because somehow Lowis the tortoise has escaped from our backyard under the fence. That was one determined tortoise. She would not let us pull her back to our yard at all. Nope, not gunna happen. One of the kids had to hop the fence to hand her over. So then, we still wanted her to be able to enjoy the nice weather and be outside so I get this brilliant idea to tie a hugiangous (this is a Brynn word.. It is a word that describes size... It is huge+giant+humongous and said like this hue-gang-gus... Just wanted to clear that up for some readers who don't know me. I don't know if they exist out there but JIC(JIC-stands for Just In Case)) ribbon around her shell and tie that to a tree. Smart right? Guess not, cause I got busy doing something and the next thing I know my friend says she is missing again. Sure enough the ribbon is blowing in the breeze. Dang git!!! We go on a hunt and decide she is probably back under the fence and getting the heck out of here. I don't blame her one bit knowing my track record for pets. We hop in the mini van of wonder, and head around the block to the neighbors to knock and see if we can find her. She wasn't there. Ry starts crying again. Poor girl, her heart just can't take it! I go straight to the bush she likes and dig a little this time and there she is! She was tricky tricky.
That is not even all. Today kicked off the first day of Spring break and we went to a friends house for books and breakfast. We had yummy breakfast, read and played games, all while sporting pjs. The kids are having so much fun in this nice weather that after a few jobs I just let them play outside the rest of the day!!!
I am so glad we got everything back that needed to be got. Got it? Good!

Tuesday, March 26, 2013

A date at Monkey Mountain

Daddy had the kids so excited when he promised them a date at an unknown location if they would be extra great helpers on Saturday with jobs and chores.
They worked really hard, the house practically sparkled!
So we headed up to Park City for some fun at an indoor playground called Monkey Mountain. They kids had a great time... Even Miss May who would coo and smile for dad! 
 
 
 
 
 
 
 
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Sun glasses, protect our eyes from the sun!

Anyone see that movie, that title of the post is quoting??? The first one to name it in my comments, I will send you a prize!!!
 
We are all ready for the rays!
 
 
 
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The crazy park

The park by our house is awesome for two reasons... One; every time we drive into our neighborhood and see the park the kids want to go ssssoooooo bad. The second reason; because it is a park by our house, people who are playing there tend to be friends and the kids want to play with them ssssooooooo bad! The down side is that the park is made for kids Ry's age and not Munchies... There are usually lots of falls and scrapes.
Munchie can most deffinaitly rock blue socks with any outfit.
  
And while pictures of Gator are hit and miss because he is at school and so the little girls get the  
 
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Sunday, March 24, 2013

Gator is featured

A friend let me know that Gator's picture was featured on the Make A Wish Facebook page. I looked at it and smiled! It was such a happy/carefree time.

Top of the Morning

I know this is old news but.... Happy St. Patricks Day!!! My kids were pretty disappointed to find that leprechauns don't come to EVERY house. How each holiday has turned into a gift fest I have no clues. They wanted to know what the leprechaun left... Seriously???? I think I am a pretty great mom till I get on Pinterest and find out how other families go all out at each opportunity. I did dress them in green and I did have the house decorated... Mmmeeehhhh! I am a great mom (repeat ten times) Non the less it was a fun holiday. We did make some memories together.
 
Besides how could you not love a clover clad bootee???? At least baby was rocking some shamrocks... I promise to be better next year.
 
And just in case you had questions on whether this little gal got pinched? She sure did! who wouldn't want to pinch her cheeks? Both sets I might add.
 
Sissy was all over her... There was no worry if she was Irish! We just kissed her all that much more. Now that is a holiday I can love... The kissing holiday! Smooches to all!!!! 
this babe is not impressed with big sissy as much as sissy is impressed with baby!!! 
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Wednesday, March 13, 2013

2 month Doc Appt

My little Squish had her two month appointment today with Dr. M. She is getting all chubbers, weighing in at 12 pounds 11 ounces.. I think she will take after her daddy in height; 24 inches! This all makes it so she is sporting 3-6 month clothes. We talked about her MRI date and then when the doctor looked at her bootie she was amazed at how it has changed. I have been taking pictures. I learned this from infectious disease, that way you can document changes. After looking at all of the pictures, she thinks May's bootie is all red/purple because she has something called a hemangioma. This is a cluster of veins that is pretty much harmless. Well except that it is midline (near her spine). It should go away by the time she is a teenager. I am supposed to send some pictures in a couple of weeks to her ped and also mention it to Neuro. It is actually pretty common and consistent with tethered cord syndrome. I am so thankful that as of right now this whole thing doesn't hurt her or bother her in anyway. It is such a blessing to have such wonderful doctors and specialists. There are many people out there that have to really push and advocate for their children. I believe I must have hit the jackpot. She is running a low grade fever tonight after all those shots. Poor baby:( Shots day is not a favorite of mine.
I scheduled Gators cardiology appointment. I always tell him way in advance when he has appointments so that he can prepare his little mind. He got kind of emotional. Frustrated that he has to have stickers (EKG leads) but after promising a toy of some sort he perked up. Then I told him about wearing his halter monitor and he had another fit. He is afraid his friends will make fun. I asked him if his friends have ever made fun of his special heart? He said no, I told him that they wouldn't make fun of him for this either. It is like a jet pack... They will have questions but won't make fun. We will see how it all goes down. I am trying to listen to his concerns and calm his worries. Sometimes he has to experience it all to believe me, also he has to get all that anxiety out before the appointments. I reminded him that he would be an example to his little sister of how to be brave. I am so proud of him for talking to me about it. He really is a great kid!
The sun has been out and we have been playing outside. It is wonderful to be out enjoying it all again. Hurray for spring. I haven't even started my spring cleaning lists yet. So much to do so little time. The tulips and daffodils are coming up. I can't wait for it to be flip flop weather so I can free my toes!!!

Sunday, March 10, 2013

We made through...

On with another week! Sometimes I need to just make it through, then look back in triumph because we made it, and almost virtually unscathed. We are just busy with the week type things. Homework, grocery shopping, parent teacher, half days, hair clients, sleep overs at grandma/papa's, birthdays, women's conference, home and garden shows, cleaning house, laundry (pretty sure ours breeds), church and more... Wonderful things.... My sister is on a LDS mission in Cali and I promised her I would write lots of letters and the week has gone by again with her package sitting on the counter... There is always tomorrow, right?
Women's conference was really fantastic. I love that I never need to search for an answer to who I am or ask if I have worth. When I go to something like this is rejuvenating to my emotions and my self worth. I think that is one thing that I love about being a member of this church. We are always being told how wonderful, loved and special we are. Also, that we each posses talents and gifts that won't fit into every shape. So we should stop worrying if we aren't perfect, that society has screwed up the standard for how women and girls should be. To know that our best efforts bless our families, even if its not just how someone else thinks it should be. That and to quit judging others because (my mom used to tell me this) we should just worry about ourselves, it is a big enough job! Awesome!!!








Wednesday, March 6, 2013

After...

After we got her dressed... She was happy and smiling...  
What was it about the horrible photo shoot? I have no clue!
 
She is so sweet!
 
I just want to SQUISH her cheeks...
 
Or smooch em...
 
and snuggle her!
 
 
This is the other reason that photo shoots are hard to manage anymore... 
Don't think this little one is exempt... Trouble, I tell ya! 
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MayLee's Blessing

Similar to a Christening, a Blessing is a time when an infant who is born into our church (we call it 'born in the covenant") Is taken in the arms of her father, encircled by other men who hold the priesthood, and they give a special sweet blessing. They also announce the name that the parents have chosen. I love this blessing because it is personal to the baby.
For each of our babies, the grandma's have made the dresses and the blankets. Each of my girls has their own special bracelet that will be modified if they choose to be baptised and also again when they get married. Their dresses and afghans are theirs to use with their babies or to keep as keep sakes. Gator was blessed in the hospital right before one of his ohs so although he has an afghan and outfit. I don't have pictures of him using them.
I don't have faith in my Photography skills any more so I will be taking her to get her pictures done for reals... In the mean time here are a few to hold you over.
Little squishes dress is unique in so many ways. The whole dress was made from some beautiful things that were inherited by my mom. My great grandmother hand made all the lace and trim on the dress. The gown portion was pillow cases and the bodice was napkins... They were so beautiful how could you ever sleep or get food on them... The lace on the sleeves was hand tatted.. We constructed the head band of left overs. Even the tiniest details around the neck and bodice were pieces that our Grandmother created. My amazing mom, made this dress.
  
She also made the bracelet. On the day mom was making it she called me to ask what May's birth stone was... I had no clue. We both laughed so hard when we figured mom would know better than me anyway as MayLee was born the day after my mom's birthday. The little Garnet is on the side. 
 
 
This is the gorgeous afghan done by Jeff's mom. I didn't get any better photos of it because.... weeeellllll!!! 
This happened
 
And THIS.... I wanted to show off her cute little bloomers and the shoes I made but the photo session was O.V.E.R

Until the next attempt...
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Saturday, March 2, 2013

Oh. My. Gooshie.

The other day Munch was entertaining herself while I nursed, by watching babies laugh at various things on YouTube. One of the clips was of a baby laughing soooo hard while her doggie companion ate popcorn. When Munchie saw this she said clear as day "Oh. My. Gooshie. You gotta be kidd'n me!" That whole scenario was just too much for her I guess. The rest of the day she'd say "what da heck"! From whom she gets these comments, I just don't know?

My Ry is just getting so grown up. She wanted to prove today that her curls were still there. She had me defuse her hair... Then I had to take a quick photo cause she looked so darn darling. Love this girl!



Friday, March 1, 2013

Kinda hot and bothered!

As I have mentioned I have been researching Tethered Spinal Cord Syndrome. One thing that was very comforting with Gator, was reading about other children who have Hypoplastic Left Heart Syndrome... When I type in searches for HLHS about 1100 pages come up... I have been able to find 3 people's stories of infantile TSCS. What the what???? And... these are old stories, so its not like I could leave a comment to chat with these people. So I am hoping that someone knows someone who can chat or is going through the same thing. Thanks!!! Otherwise I will have to stay hot and bothered. Well, maybe not hot. It is the end of February and pretty cold outside in Utah. It is a teeny bit discouraging to know May's syndrome is more rare. May's condition effects 1 in 1,000 babies. Gators effects 1 in 100 babies. I have been spoiled by the support of friends and family for both kids, but our heart family's support is empathetic support. To me it is pretty valuable. I kinda really wish there was something similar.