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Life with a boy and his Hypoplastic Left heart Syndrome, Also a baby girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, and Two Super Sister's!

Tuesday, August 11, 2015

It went just like that!

I have so much to be thankful for... I just wanted to say that. 

Asher will be 2 months tomorrow. These days I just blink and my kids have changed. He is already wearing 3-6 months clothes. Tomorrow he goes in for his welll check and I am curious to see how big he is. Asher takes gaining weight and eating very seriously. He is kind of my fussy little guy. I think he wants to make himself known and not forgotten number five.  He is so loved and a great snuggler. And boy can this dude belch. That is probably why he fusses. Darn gassy tummy.  

He is smiling a little now and pretty soon here, I am sure we will hear him laughing at all the crazy things his big brother and sisters do.

He really is a sweet little guy. 
I either don't get anything done... Or I put him down and risk waking up this sweet face.

MayLee is officially potty trained. We visit every potty, at every place we go, multiple times in fact. She is deathly afraid of the potty at the blue park. The darn thing flushes all by itself and its incredibly loud. She flew off of it and refused to go. There was a Honey Bucket across the street which was just as bad. She has bathroom OCD... There can't be tp on th floor, nor any remnants in the potty, it can't even smell bad or she flips out. We have to have the scrubber near at home in order to keep her potty clean and ready for her. She could be the bathroom inspector.



Eden has been a champ getting her teeth fixed and promising to brush away all the cavity bugs.


She keeps us laughing.
Biggest news of ALL!!! She learned how to ride a two wheeler. Her bicycle loving daddy couldn't be more proud. She has had a few spills but gets back up and does it again. She must have it in her blood, and a daddy with all the right teaching techniques.
It always amazes me how fast kids can pick it up. Just four years old and has it down. I think the biggest motivation was a pair of fingerless bike riding gloves she wants. I told her once she got it down we would go pick out a pair. I guess I am going to the store tomorrow to find some.





Gator finally had his friend birthday party. Papa Clawson brought his screen/eqiuipment and we watched "Home" with so many treats and popcorn we were all sick. It was a riot. I hadn't ever seen the movie before this night and I bought it hoping it was a good one. It is darling!!!! Thanks Papa and Gram  for making this such a fun birthday. Thanks friends for the nice gifts you gave him. We are richly blessed. 
Ry is my right hand lady. She will be a fantastic babysitter. She can even change a poopy diaper on a wiggly baby brother. (Those guys are hard, on account that they have a shooter that can spray fire hose status) I am super lucky to have her around. I don't think she is pumped about tracking off this Friday because she loves school so much.. I know, I know... she loves school.. What the what??? 
Our dear friends the Englands came into town for a visit. They even made it to Asher's blessing. We soaked up what time with them we could.

I don't have any awesome pictures of self... I do have my insides from my colonoscopy. I don't think I should share. I have heard pretty much every bum joke lately. I also told the doctor I probably had the cutest bum he had seen all day. Yup that's right. I also said a few other choice things while waking up from the anesthesia, however, I choose not to say them again. I went to the doctor yesterday for follow up. The biopsies they took came back clean (good thing because bum cancer isn't even the cute color. No pink ribbons... No cancer is cute BTW, I just didn't know what the awareness color was.. I thought perhaps brown, which didn't sound as cute as pink) I also don't have Crohn's disease. Apperantly a colonoscopy cannot go very far into the ilium or small intestine. This is were I was having the pain and also were the CT showed inflamation and abnormalities. So I did a blood test that is a little more intense which will give a better clue. If it doesn't show us what we want, then I get to do another test were I swallow a pill camera. I just hope I don't have to do a prep again. That my friends, is not fun. Especially with a nursing baby and a two year old... I dashed to the bathroom in the middle of a nursing session.. laid baby on the floor in the bathroom to save him from his sisters, who believe that he should be bathed in kisses. Close on my heals was MayLee who proceeded to put her fingers under the door and ask if I could see them... and knock.... and try and unlock the door..... then put little toys under the door.... All the while Eden needs a treat, or a drink, or could I get her a new game on the ipod... I think if you have to go through the prep you should at least get to do it while the kids sleep. I also finished the steroids.. It's a good darn thing. I am pretty sure I could eat us out of house and home. Those things make you starve all the time. Instead of loosing baby weight I am putting it back on. There is absolutly no willpower too, my brain says you are not only hungry, you are starving to death. I did feel better on them. So I started a new medication that I really hope works.  Thank you friends that knew about my embarrassing bum issues and have helped me so much. Sheesh... You never appreciate something like a gut until it doesnt work great. 

Our extended family is absolutely incredible. I am so blown away by how generous and thoughtful they all are. My Grandma and Grandpa Groesbeck have an amazing legacy of good people. They have 9 children, tons of grandchildren and great grandchildren. I wish I knew exact numbers. We all absolutly adore them. Grandma and Grandpa make you think that you are their favorite. Just so we are clear, it IS me. There are many in our heart community who don't have a great support system. It breaks my heart because it is such a valuable and amazing thing to be cared for by so many. They all worry, hope and pray for us. Each year at the family reunion we hold an auction of items that have been handmade or put together with love. I look forward to going because the talent of my family is pretty incredible. Then the money goes toward a scholarship for all of the grandkids to use for school. The scholarship money has been carefuly set aside and there was money left over. Our dear family put it towards all of our medical bills. I know Heavenly Father heard my prayers when I asked Him about this very thing. My dad brought it to us on Asher's blessing day. I was so overwhelmed. Thank You Family... We love you all. 

Not to leave anyone out... Our bunny is doing great!!!

oh, I mean Jeff is doing great. He just celebrated his birthday... 
He tried to volunteer at the Tour of Utah, but his wife screwed it up and he missed his check in time. He did get to watch it from the sidelines and we watched clips on his app. It is like a very important game to him. He doesn't get worked up about other sports, but we were streaming it from his phone to the TV and a call came in which turned off the race and he was up out of the chair, trying to figure out what happened and yelling at the TV and the phone. Whew!!! It was comical to witness. I really enjoy watching it too. He is staying busy with work and calling. He spoke at the youth fireside this last Sunday. He did a great job. How he can get up there and speak without throwing up is amazing? I get so nervous. 

Alright... I can't promise anything, but hopefully I will do a little Asher post tomorrow...







Thursday, July 30, 2015

Happy May May news

It's here FINALLY!!! The first day of school. Long awaited and so welcome for this momma. I am ready for the structure and age appropriate activities for Gator and letting the little girls play together. Ryleigh loves school and is always thrilled to go. Bless her for making it easy on me. As long as she has her new clothes and her perfect gear she feels ready, taken care of, loved and excited. I just can't believe she is in fifth grade. One more year until my life changes forever.. I will have a built in babysitter. And I pay really great! You need a new outfit? Awesome, daddy and I wanna go on a date, you want to go to the movies with your friends? Awesome, I wanna go on a ride. (one year *sigh*) 
Could we have found a more perfect backpack?? Turk-boys (turquoise) with Eiffel Towers, macaroons, and Vespas. 
 And Gator is seriously rocking his new kicks. They do make him run fast and jump high. Just in case anyone wanted to know. He tried them out, so I am aware of these features. 
Oh yeah!
He got made fun of today because he was so little.. But I said.. "Well you are little, and it's way better to be little than mean to others and make fun of people who are different". That seemed to make sense. 
He can totally rock his 5t shorts. And they are a little big on him:) 
Standing in line to go in. 
Look at this cute little guy in his new towel. Thanks Grandma!! 
Six weeks and wearing 3-6 months clothes.. He is growing like a weed. He is working mega hard to get big. It's very serious work. 


Yesterday MayLee had a CT of her lungs to help us see if she is improving. I took baby brother because, well, I am his groceries. 
We headed up to the main campus bright and early, checked in right in radiology and waited for a few minutes until May was called. Then she talked, sang and played until they put in her IV. 

She was not happy about it until the nurse brought in a huge treasure box and there happen to be Play Dough in there. 
She passed up a ballerina Barbie and a my little pony DVD for yellow and green play dough. She did fantastic. That is one of the fastest tests I have sat through. Like five minutes. Then when they were waking her up she was like a little slurred drunk. She kept saying "I was sooooooooo bbbbbrrrrraaaaavvveee"  she was cracking very nurse up. She was super happy and ate her Popsicle and then crackers. They wanted to keep her all day. 
The doctor called today to let us know the results. MayLee's lungs have significantly improved. She still has the ground glass opacities in her right upper lobe and middle lobe. Her left lobe looks clearer. She is still going to be on oxygen for a while. Until she can maintain her saturation level. BUT.... We are going in the right direction. Awesome right? I did figure out that I should get the smaller tanks and it has been so much nicer. 
And we will leave you tonight with this little milk drunk boy! 

Sunday, July 26, 2015

Constantly

Each day he gets this kind of love!!! 
His face says it all. 

Saturday, July 25, 2015

Pioneer Day, but happy 6 month heartiversary!

Gator had an amazing clinic visit on Thursday, blood panel looks good, echo looks great, feels awesome, looks like he is growing. We are so pleased with how well his health is. This means he gets to start school on Monday!! (Did you hear the chorus of Angel's signing?) I am so glad he gets to go back to being a typical boy. Plus also, as much as we love each other he will be thrilled to not be with mom 24/7 and since I have the new little buddy that has filled the spot I am thrilled to let him go. He is slightly nervous, we met with school staff last week as well. We updated everyone on his 504 and came up with a game plan. It was amazing to cross so much off of his 504 instead of add to it. I have meantally prepared for lots of adjustment tears, lots of this is hard, and lots of growth in him. But we Homies don't give up because something is hard. We don't have to be the best at it, we just have to try our best. 
Yesterday marked his 6 month heartiversary. I took a minute to thank our Heavenly Father for his amazing second chance at life. I also thanked Him for our donor family. How their hearts must still ache. I have my first draft of the thank you letter we will be sending them. I have written probably 12 letters. This letter will be the one I want to send. Daddy wants to add to it as well so that it truly comes from us all. 
The kids did a primary pioneer parade. It was also a water activity so they have their swimming suits on. 
Ry and Alex visited the dentist and Ortho.. Alex has a cavity to be filled. I am thrilled it's only one little one after the year of meds and other stuff going on in his mouth. Ry had her bands changes and since her teeth were growing over her wires she got four teeth pulled.
She painted this rad tooth box because our tooth fairy has had so many issues. It worked, the tooth fairy was able to retrieve her teeth and deposit the cash. 

The kids have been helping with dinners and clean up. But I thought these green and purple beans were super fun. When you cook them they go green. Such yummy fun. 
This is Asher hanging out, while me and Gator have breakfast after clinic. 

Plus... We are still having fun.. Thanks to the Zamoras for your friendship that allows us to hang out but also lets the kids swim.. 




Monday is going to be super exciting!! Hurray for school!