We had a terrific Christmas this year. The last two years I wasn’t sure if Logan was going to live or die and it was pretty hard to really enjoy them. This year I had a ton of Christmas spirit and really enjoyed the season. I don’t know what is going to happen next year but this year I had my two boys and they were both feeling well and happy.
I will just share our holiday season with some pictures.
Ethan my 4 yr old Son.
First year with our Elf which was fun. Logan didn’t understand but Ethan loved it.
Playmobil Advent Calendars
One evening when it was just Logan and I we had so much fun baking cookies together. He filled and dumped this nut chopper probably twenty times. I was a huge help 😉
Christmas Eve was again overwhelming for Logan. I am not sure if its trauma from all his hospitalizations, or some sensory processing issues, or if its completely normal, but he gets over stimulated very easily and sort of checks out. Last year he couldn’t stand to be in the same room as the chaos, this year he couldn’t stand the sound of wrapping paper being ripped and crumpled, he sat in this chair for most of the night with his half sister Stephanie and played a game on the iPhone. He didn’t open anything and had no interest in any toys other than this iPhone and a deck of alphabet cards.
Christmas morning was the same. Logan had no interest and made a face and whined every time wrapping paper ripped. He got some alphabet and counting books and he was set. Ethan enjoyed the fact that he got to open more presents than Logan. Yes, Ethan is 4 and yes that is a paci in his mouth. I have nothing to say about this, other we have just had bigger fish to fry these last few years, and quite frankly I would rather Ethan be putting a paci in his mouth than his thumb which would be picking up many many more germs.
Love these pictures of Logan looking thru his alphabet and number books.
People were asking me about the book with all the numbers so here is a link on Amazon if your interested. Logan Loves it!
It was a wonderful Christmas. Hoping to start building more happy family memories.
As far as Logan is doing medically he is the same. His sats are lower than everyone would like and although his cardiologist at Boston is worried we have decided to not bring him to Boston during the flu season. We are going to wait until spring and then he will have a cath done. Maybe they will be able to close his fenestration (the large hole in his Fontan conduit, essentially a man made ASD) and his sats would then go up but they may not be able to either. If they aren’t able these are just the sats we are gonig to have to accept. The fenestration closure is an all or nothing thing, they can’t make it smaller, its close it or leave it open.
He is still not eating much. This is becoming very tiresome. He is hardly growing (at his last appointment is was 100 grams or something) and he is hardly eating. He is still getting most nutrients from Similac Sensitive Formula which is utterly ridiculous for a 2.5 yr old. Yes, if you are wondering, “have you tired?” I have tried everything.
I am very anti-feeding tubes and I have actually found myself wondering about a G-tube (stomach feeding tube) lately. Only for brief moments and I am not really even close to that point. I would only do that if he was continually losing weight and it was a very last resort.
This is one very finicky and stubborn child and food is the only source of control he has in his otherwise chaotic life. I have been experimenting with some recipes that I have been having luck with and will post about that soon!
He is still only butt scooting, no crawling or walking, but he is tying! He gets on all fours but his upper body strength is just not there yet. I believe crawling is going to happen soon.
He is still on Viagra or Sildenafil every 8 hours to help vasodialate his pulmonary arteries to reduce the shunting in his fenestration. It is working okay, which it was working a tad bit better. I think the O2 may have worked slightly better as a vasodialator on him but the couple of O2 pts isn’t worth the hassle.
I also recently got in the mail some pictures that were taken of Ethan and Logan last Christmas. They are some of the most precious pictures I have! Thank you to Felicia Lewis at FML Photo Design! If you live in the Cleveland/Akron area highly recommend her! More info at http://www.fmlphotodesign.com
What a difference a year makes!
Also, if you are a heterotaxy survivor or parent please look up The Heterotaxy Network on Facebook. There is a group of a couple hundred of us and the knowledge level is amazing. Sharing stories with families from all over the world has truly been inspirational.
Me, Logan, and Logan’s Great Grandma
~Happy New Year!