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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.

Tuesday, March 11, 2014

A much needed break

It's been.....
A while.....
since I have recorded our family happenings. Not because we haven't had much going on, mostly because sometimes it's easier to just do something or things without planning the dialogue.
Right before the kids tracked on we visited my Groesbeck grandparents. It is one of my favorite places to visit. They have a beautiful home that has always felt huge. I don't know how my grandma manages it all. They have been in this home for 40+ years. They have a huge garden in back that they meticulously take care of... And... A swing made from an old tire. I always felt like I was flying. We just made it a day-cation because I never want to make them crazy with all that IS Homer children. 

The kids loved playing with toys that I played with when I was little. The really real Little People from Fisher Price. 

May loved pulling out the newspaper. Of course it was the first time she had seen such a thing. As we move into an era with less and less paper, things like news print will fade away:) when she wasn't playing in paper she was trying to navigate the stairs. Those stairs I used to slide down on my belly. My grandpa was always so worried we would hurt ourselves or ruin the carpet... He would tease us and say... " you better not do that any more, or else I will be forced to hang ya by your toenails on the clothes line" not ever one time, did I see that happen so I knew I was pretty safe calling his bluff and sliding anyway. I was so naughty. 


Eden loved having pink milk and all of grandmas treats. Not surprised by that one really. She takes after her momma.

Alex loved the swing. Grandma Clawson even took him out there in the freezing cold to give him underdogs. You could hear him squealing all the way inside. 
We decided to treat grandma and grandpa to lunch. Ry is such an excellent helper. 

My grandma is one of my heroes. Plus, she even has super talents.. She can eat popcorn, smile and sleep all at one time.. 


Alex had his first round of Desensitizing.. He asked that daddy go with him. So they could have some 'man' time. Jeff is such a great dad, he really try's to do all that he can to take care of his family... Own a business and take care of finances... Psshhhh, he's got that.... Go to the hospital with child who needs him.. No problem... Help me with household chores... Done and done! It is endless.
Gator had a rough reaction to his first treatment. He barfed all night long then fevered the next day. We kicked it with Tylenol. I made a call to TT (transplant team) who said to take him in for labs and an anti-Xa on Monday. I did let him go to school a couple if hours before I picked him up for those tests. He was feeling so much better and he really wants to be at school. Lucky for us, the last treatment he had called Retuximab, did not cause him to feel the same way. The TT wanted us to go in for his infusion earlier than we had originally planned so they could watch him better. I really try to accommodate and understand, but he really wanted to not miss his Dr Seuss party at school, or Grandma H's birthday dinner. I think we made the right choice. He had a really neat experience. He helped PCH at IHOP. He got to meet Not-so-Big-budah and the Mayor of Murry even gave him the key to the city. We have no clue where the door to the city is, but Gator would love to try it. He was pretty nervous at first but ended up having a really great time. He decorated pancakes, talked to all the pretty girls from the Murry High Cheer squad, hung out with policemen and firefighters, and got free pancakes for a whole year. 





Jeff is sad to see her go. He is selling one of his bikes. It took him some time before he was ready. Now it will be documented here forever. 

Eden has been having some eczema issues for a really long time. I tried everything.. It just wouldn't clear up. I hate to take the kids to the doctor unless I am sure I can't manage it. I have a weird phobia of someone thinking I look for reasons to take the kids in... Well it's been months and I still couldn't get this better. In fact it just got worse and worse... Her little tights stuck to it on Sunday and we had to rip them off which caused it to ooze... No good.. So I finally gave in an called. 
Empetigo... Eewww. Oral antibiotics and topical antibiotic cream. This is after one treatment. You can see right where the bandage line stopped. Sorry Munchie, mommy Fail!
She says the funniest things. She gets her words all mixed up. Here are a few.
Co co low low = Coca Cola
Bwek sass = breakfast
Gwenna ba = granola bar
Ho wheels = high heels

May is talking now too. I was so worried because she doesn't speak early like Eden. She can say: yup, nope, thank you, please, stinks, amen and she sings "Gooooo Goooooo" for Let it Go! 

I think I am caught up now!! Whew!
















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