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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.

Friday, June 28, 2013

I dip, she shovels!


Are we even surprised that May likes to eat... Today she was tasting carrots... But since we are doing a combo of LED feeding and some purée foods, she gets to do the shovel it in part... Mmmmmmm... I love yummy food. I hope she will love all yummy foods too! Today she also tried eating avocado. Those suckers are slippely (slippery)! She would just coordinate her hand to grasp it and it would shoot between her fingers before she could get it to her mouth. She solved it by scooting everything close to her and hoovering it off the table. Mmmmmm... 

Plum tuckered out

This is what Seven(eight) Peaks will do to a heart boy who try's real hard to keep up and a two year old who missed her nap.... 
It totally makes me giggle..

Sunday, June 23, 2013

It takes one night

Is everyone who struggles with asthma feeling it? May had a rough night, a dry non productive cough kept me up all night checking on her and finally putting her on oxygen... Then I was so exhausted I couldn't keep my eyes open to get ready for church. So daddy stayed home from meetings and took a turn with baby. It was so needed. I felt good enough to take my other kiddles to their classes. I had to use her rescue inhaler today and still with the coughing. 😷 But I checked her temp, listened to her lungs, no crackly sounds or wheezing, sucked out her nose, I think it's just a cold. It makes me crazy that a cold can make her this miserable:( tomorrow is a new day!! Good thing I like those!!!

Friday, June 21, 2013

Out on the grass

The side effects of her new medicine are sooooo horrible. Tummy aches, vomicking, grouchy as can be, only wanting me to hold her... It was night and day difference on and off this stuff. She was almost sicker on the meds. I guess I will be making a phone call to pulmo to see if we really need that Singular. Or if there is something without the side effects. Her inhalers are doing the trick anyway.  I love to nuzzle her sweet cheeks. We went to get ice cream tonight and the guy standing behind us in line wanted to take her and feed her all his ice cream. She just smiled at him and clung to me. 

Not enough hours for everything!!!

HONESTLY!!!!! Did someone hit the fast forward button? The days are cruising by. Summer is nearly over and I don't even have half of the summer bucket list done... We have gone to Tarzan at the Scera Shell and we have been to seven peaks, played outside till late, had a BBQ, read almost every day, crafted and played at 3 of the 15 parks we are supposed to visit. But.... But.... It's going by way too fast... We have also had two sick little girls... Munchies temp was 103.6 the other night. And Miss May was 101.5 . It's not fun at all. May also visited the pulmonary specialist who confirmed her Asthma. So now she is also on singular granules. It has the most terrible side effects and she is more miserable on it then without. Besides her two inhalers. But I don't see any improvement in her breathing/retracting. Pulmo said we should wait until after surgery for her TSC to do further testing. Like a sleep study or a swallow/scope... I agree, with her spine being the first thing to heal and manage then we can look deeper at her breathing issues. Her hemangioma continues to change. I haven't taken pictures recently but I should. She has also started on whole foods. I really like LED weaning and have given her a tomato, cucumber, apple, peach, bread,and tonight she tried pancakes.... Mmmmmm. So far she loves it and is making a total mess. (I guess pancakes aren't a whole food) Munchie is living it up... She loves to play with the kids... Gator is doing so good with asking what jobs he needs to do before he plays. Ry Ry is always planning something. She has it in her head to do a mini back sale so we gotta get on that soon... Plus we are finishing the basement. I could do a happy dance... As our little family has grown into a big family we really need the space. Big reveal to come. And last we added four guppy fish to our household. Gator named his Mohawk warrior, Eden named her Fukerella... Not sure on either of those but we will see... 

Thursday, June 6, 2013

No lazy days of summer today!!!

We have already started our summer off with a bang! Today was the first day.... At 7:45 this morning we had two little visitors over to see if we could play. I unfortunately was not out of my bed yet. I still get up with the baby a few times in the night and try and go back to sleep after her last "night" feeding at 4:45 am. Her "morning" feed is around 7:45 to 8:00 so I was going to get up anyway. We then headed out by nine to Orem to a super fun gym called Xtreme Air Sports... It is trampoline and jumping gym. We got in free with our POAP!!! Then we went to get tickets for the Scera Shell. Also free with our passes.. We had packed a lunch so we went to the park to eat and play! With a quick trip to Krispy Kreme we made sure to get home for me to cut 7 inches off of a cuties hair... Then May and I hopped back in the car and went to donate my blood. They were happy to take it:) I always get the call because I have O+ blood and apparently it is the most common, so they need a bunch of it. I took two treats because I am nursing see. Baby would get hers through me so it was only right. Back home to a dinner in the crock pot that wasn't done all the way. Dang it!! I made such a yummy dinner, chicken cordon blue in the crock pot... But the chicken wasn't all the way cooked. So we had to throw it in the micro so we wouldn't get an upset tummy... Then another haircut... Clean and tidy the house... Babies to bed.... Breathe... Tomorrow we have a bunch planned and I am even thinking I am going to talk my kids into cleaning windows... How do you think that will go over??? Yeah probably that good. We only have a couple of weeks off so we are going to pack it in.. Ry has been training with daddy for a big bike ride this summer. She is doing about 24 miles during her ride. So far they have gone 8.5 miles on their longest training ride. I love that she wants to do this with her dad!!! I am so proud of her! Alex started tennis lessons. All the cutest boys play tennis. I know it's a little preppy, and he is more of a dirt kinda kid, but he really likes it. We got him a little racket and some tennis balls. He calls himself a tennis machine, I think he will be my kid that wants to be good at something so he will stick with it because he wants to master it. He also wants to give golf a shot. That seems expensive but we are happy to let him try these things. Both kids did great in school. Ry is reading so well, she on an R level. They like to see second graders on a level m when they finish school so she is doing great. She is really loving French and I am so amazed that she is picking it up like she is. She is continuing piano lessons and will be doing a performance sometime. Gator finished kindergarten and is reading. I am pushing him reading every day for twenty minutes. He finished on a level B so not all the way at a level C. But we will push to catch up for first grade. It just barely clicked in his brain, like one month ago, so it will take a little practice. He loves school, I think that is just as important.  I am proud of him too! There was a lot to learn and process this year and staying well was one thing he did well. Pictures to come!!! 

Sunday, June 2, 2013

Bling bling

On Friday we took our little girlie to get her ears pierced. As I was holding her head she started to fuss. They pierced them, she got mad for a teeny minute and I turned her around and bounced her on my shoulder for a few seconds then she was all better. Just like her sisters. 
We picked 14kt gold flowers... Ry loves making her smile, gator and Eden can get her to giggle so hard... She is so much fun.