Thanksgiving

What I am thankful for this year...

*family that supports and loves us - we are blessed to have a family full of people who understand that we no longer travel for more than day trips and have super weird rules about cleanliness.  They love Luke even know they will never see a smile, they have learned to read him and love to just love on him, as well as our new little bundle Hannah.

*that we live near enough to my parents to have help with Luke, as they are the only other ones that can care for Luke without us there

* that Luke has not seen been to the ER for a long time and not yet this fall, PRAISE THE LORD.  Although currently he has a slight fever and super junky, we are praying that this is just a normal kid sickness and he will be over it with no further outside care needed.

*a husband who is fully hands on - he can fully take care of Luke and all his needs, he give the kids all their baths, he reads to the kids when he gets home and I usually need a minute to catch a breath, he takes care of me to make sure I am doing well enough to breastfeed Hannah and care for Luke and when I feel like I have done nothing all day assures me I have been productive as I have kept the kids fed and diapered and cared for.


*our home health nurses. There…I said it! They may drive me crazy from time to time, and they are the family that I never wanted to have, but family they are, and I am so thankful for the way that they love my son. I am thankful for the sleep that I am able to get because of them. I am thankful that I rarely am without a nurse.  I am thankful that they are working the holidays this year.  I wish we didn’t need them, but we do, and I am thankful for their commitment to our family. (derived from another mother's post)

*a church family that supports us and even know we are weird and germaphobic so don't let people touch Luke on Sunday morning they still talk to him and have gotten to know him and now Hannah.

*all the people who pray for Luke and us and continue to pray even when we are not in crisis mode and thing are just normal, our normal

*for Hannah, even though she didn't come in the manner I wanted, is here and healthy and such a cutie and a joy.

*for a house, food, clothing, internet, heating, a comfy bed.

*a God who has gotten me through everything so far with Luke and will be there with me forever.

Trach out!!

Luke is at it again.  When he gets mad he is pulling on his trach and twice yesterday he pulled it out.  Someone was right there each time and I got the new trach in with Luke only getting a little blueish.  I explained to him afterwards why it is not good for him to pull on his trach.  I don't know if he understands but he seems to understand so much else I thought I would give it a try.  When he is tired and mad it's like he just doesn't think.  I see him many times reach up to pull and then stop or just touch the trach and then pull his hand away fast which makes me think that he does know that he isn't supposed to do it.  It is like he just gets too tired and upset and he doesn't have the self control.

On the outside it may not seem like this upsets me.  At the time it does me no good to break down and get all sad about it because my boy's life is at stake, I am in survival mode.  I try not to dwell on the life and death of it to often because I feel if I do I may go into a depression about it.  And then the most upsetting this was the last time he was pulling a bit, just after Hannah was born, my nursing company had the audacity to call me up and insinuate that I was being a bad mom and just letting him pull on his trach and not do anything about it.  HELLO!  Think about it, who wants to see their kid turn blue and come close to death right before their eyes.  No one.  The first 3 times his trach came out it was on a nurses shift and not caught as quickly two of the times.  When this happened I called my ENT, pulmonlogist and wrote on the trach boards to get ideas.  I got a longer trach from the ENT, a "he's just 2 and not much you can do" from pulmonoloy, and some two ideas for ways to put things at night from the trach boards that I implemented.  Was there any advice from the nursing company, no.  Sorry for the rant, it still makes me mad.

Last night trying to get Hannah to sleep I started thinking more about Luke and his trach coming out and I cried.  It don't like to have to watch my boy every second to make sure he doesn't pull his airway out.  I don't like that he is so fragile but it is what it is and Luke is an awesome little boy.  If I could change it I would but I can't so I don't dwell often but pray that it will never come out when we are not taking it out for a change again.

And a cute picture of Luke who makes it all worth it.

Moebius Syndrome Holiday Hero

Luke is today's Moebius Syndrome Holiday Hero on the Many Faces of Moebius Syndrome site.  You can check it out here http://www.manyfacesofmoebiussyndrome.com/