January 24 is Moebius Syndrome Awareness Day

Tomorrow, Tuesday, January 24th is Moebius Syndrome Awareness day. I ask you to please wear purple and talk about Moebius Syndrome and this little boy named Luke that you know with Moebius Syndrome.

Why is Moebius Syndrome Awarness day important?

1. The more people that know about Moebius Syndrome the more likely babies can be diagnosed right away and their parents do not have to wait in limbo no knowing what is going on with their child. Luke was lucky and we had a friend with Moebius Syndrome and doctors who had seen Moebius Syndrome. I know adults and children that didn't find out for many months, years or even decades. Also, when you know your child has Moebius you become part of the Moebius Commuinty where people have been where you are and can help you through it and give you advice and encouragement and just be there. When you are unsure of your child's future it is nice to see adults with Moebius that are living life like everyone else.

2. The more people that know about Moebius Syndrome easier life will be for Luke. When people know that he can't smile and may breathe through a trach but he is a normal little boy who loves to play, has feelings and is just as intelligent as the next kid (although we think he may be smarter, no bias ;) ) Hopefully, when people understand why he doesn't smile or show expressions they will not stare as much or treat him poorly.

Here are some links to stores and articles written about Moebius people:

Tim Smith, adult

Chelsey Thomas, young adult

Jayden, 4

Caleb, 7

Kevin Smant's blog post with many more links

I must say I wish I was more involved with the media and such but I can hardly keep my head above water most days. I think my mom once told me that Luke is young takes a lot of work and I can do more when he is older. This made me feel better espcially since I am also in the middle of sleep training for Hannah. (I think we are at almost 2 hours of crying tonight).

Tomorrow happens to be play group and so Luke, Hannah and I are dressing in purple. Luke didn't have anything purple and I don't get out to just "shop" often so I didn't pick him up a shirt or get around to ordering one online. So I made him a purple t-shirt tonight, organic material even, out of some material I had lying around. It has some flaws and due to time constraints I didn't want to take the time to pull out entire seams. However, for a freehand t-shirt I think it does the job. I am actually quite proud of myself, especially since I just never seemed to have the drive, or talent (which I may still not have) for sewing like my seamstress caliber mother and great-grandmother. We also have bracelets (which my parents got for me) to hand out at playgroup. One of Luke's teacher/therapists is meeting us there and has agreed to wear some purple herself. And the nurse and therapist that came to the house today got bracelets. So I guess I am starting with a small group and as Luke gets older and I feel more under control (or maybe you parents of older kids are laughing thinking that I will ever feel under control until they are much much older) I will expand my awareness day activities.

So if you have gotten to the end of this post here's the take away message:

Wear purple Tuesday, January 24th and talk about Moebius Syndrome

Project Life - saving my family's memories

So I head about Project Life through the Mom Creative blog.  I am always on a mission to record our lives enough so that I can look back on the memories later.  I don't want to forget the things in our life and times with my kids.  I love looking back at scrapbooks and memories.  So Project Life was a fairly simple easy plan.  I am more digital so I decided to try it digitally but who knows I may do it by paper if digital doesn't work out.

So here are my first week's pages...I have lots of creative aspirations that I have to tone down to the reality that I just don't have that much time.

I used two kits from Wishing Well Creations, "Everyday Life" Bundle volumes 1 and 2.

More Project Life links:
http://www.beckyhiggins.com/
http://gluestickgirl.typepad.com/moments/2011/11/project-life-how-i-make-it-work-for-me.html\

Blessings through it all

Counting my blessings today that we live in Michigan which has good government insurance programs for fragile kids and that our primary insurance through Kevin's work is pretty good.  I know of at least one person who has moved to a different state, one that is moving and one that may have to pick up everything and move just to get their children the medical attention they need to survive.  I am not talking just moving for a better doctor.  I am talking about moving to get their children home care to get out of hospitals and to be able to afford the supplies needed to keep their children breathing and eating.

I also am thankful that we had good doctors to diagnose Luke early and that they have all seen Moebius in some form.  This makes things lots easier.  Also I never had doctors tell me that Luke would not walk, eat, function normally cognitively or live.  Many parents with Moebius have been told some awful things but their kids have risen above it all.

I am thankful that we have fairly stable nursing and very few days of no coverage.  This is a rarity I have found, especially in a rural area.  Yes I get all worked up becuase there are issues in dealing with a nursing company and nurses in your house ever day, but those nurses are there, ever day.

There are so many things that God has blessed us with through all the awfulness of having a child with large medical issues. 

Thank you God for being there with us!

Some pics of the kidos

Hannah Growing (yes she is 4 months now so these are a bit old)

Hannah loves to smile and talk!

Luke got a new chair for eating and therapy.  Thanks to a great friend for the gift!

More happy Hannah.  She LOVES sitting in the Bubo seat

Luke even helps out with Hannah by swinging her (I ran the batteries out one night and haven't gotten around to replacing them)

My side of the family visiting for Hannah's baptism

Kevin's side of the family visiting for Hannah's baptism

Yes Luke got stitches again, same thing just opposite eye.  Who thought glasses could be so dangerous.  To make him feel better when it was over we went to the park to eat his lunch.  However, the car broke and so it wasn't as pleasant a trip as expected.  Thankfully Kevin was there with his car so we didn't have to call someone but getting Luke and his stuff and two carseats from one car to another smaller one is not an easy task.

Luke is now standing at the bookshelf, chairs, couch and anywhere he can find to stand.

Just my cute Luke.

The Hannah bug with daddy

Luke and his books.  Luke could be here all day reading if I didn't get him to play with other things.  I think it would be an understatement to say that Luke LOVES books.

Sick but no ER!

Luke, Hannah and I got sick after Thanksgiving.  Luke had it worst with a temperature, I had mainly a cough and sore throat and Hannah was just stuffy.  Luke rode out his temperature  as we gave him more fluids and tried to slow him down.  We carried him back and forth into his bedroom instead of having him crawl.  We tried to keep him interested in low key toys or books (with his love of books he was happy to oblige with that one).  After the fever broke his lungs were spewing a lot yellow and white thick secretions, a sign that there was an infections or virus in his lungs now.  We have noticed that this tends to happen with Luke.  He gets sick somewhere else in his body and his body fights it off but then the bacteria that is permanently colonized in his lungs is not been kept under control and so he gets a lung infection.  His secretions turned mostly white after only a few days and but he had been needing oxygen during the day, just a bit but oxygen none the less.  He also was not sleeping as well, probably because of all the secretions in his mouth, nose and lungs.   We watched and kept close track of him and he seemed to come out of it.  At one point I though of going in to just make sure there wasn't something more serious but then he seemed to pull out of things.  No more oxygen needed, the volume of air in his lungs while sleeping (his vent measures it) was back to normal, he had a couple of better nights sleeping and his secretions were all white and clear.  The increase in secretions that happened then we attributed to the weird weather, rain, snow, cold then warmer.

I am really excited to see that Luke's body can fight this stuff by itself.  His body seems to be doing what it should and with just a little help from us, extra oxygen and more fluids it can kick some of this stuff that "normal" kids get.  Go Luke go!

I on the other hand do not get enough sleep to have totally kicked my cough yet but I am feeling less run down and one of my weekly therapists said I looked a lot better than I did last week when she saw me.  So a couple of more days of some better sleep (Hannah you could help with this ;) ) and I may be back to normal.

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.