Adventures

Just over 17 years ago I made a choice to have a second child. I had had such difficulty with Mariah that the doctors believed that I would not conceive much less carry another child.  Liberty was a big surprise. 

After I found out I was pregnant and learned this would be a solo job I left my good State job, my friends and family and moved away. I wrote letters to my mom, both grandmothers and my aunts telling them that I was having another child. I also apologized if my single parenthood added any shame or disrespect to their lives.  I wanted all to know that even though life was going to be very difficult, I did have a plan to kick the worlds' butt.  This plan involved finishing college, among other things.  

I had several offers from family and a friend to adopt Libby before and after she was born.  I wanted her so badly and desperately wanted to see who she would become. 

Libby changed my life and continues to wreck and bless  my world and many others. 

I will no longer wonder what she would be like if she had not become ill that only brings guilt and sadness. Instead, I am focussing on the kid she is.  She is 17 and every day matters to us. 

She took us for a walk to the post office this afternoon and was pretty darn cute!  (We had to promise her a long nap to get her out of the house...). 

 Without her feeding tube she is a happy girl at meal time!  She's really doing well and has only had a few instances of rough swallows with water. Getting enough water in her remains difficult.  We will not be getting Botox in the sternocleidomastoids in the future.  Thank you, but no. 

17 years ago I stepped on to a road and I had no idea where it would lead us- I still don't know. I just know that I'm glad that both my daughters chose me to take their adventure with them. 

Birthdays

We have so many things to be thankful for. This year has brought us bountiful blessings and challenges galore. I have never really doubted if I could handle Libby's illness, until this year.  I have clung to the idea of making every minute count and to get through every minute with kindness and patience. This year, we have so much to be thankful for and after discussing with Libby we are going to begin to give back.  Birthdays are not a given, they are a gift within itself. 

We have been gifted with an amazing original Cassie Foster painting which we have special plans for. We are going to auction off this beautiful piece and give the proceeds to Make a Wish for Libby's birthday. 

Here is the wolf.  I love this wolf.   Libby hasn't seen this yet since we are going to try to create copy for her to keep.  And the original painting will go to whomever bids the highest. 

 

Not interested in the painting and still want to give?  We have a list of items that are needed desperately at Cook Children's, such as pajamas, card games, and toiletries. 

Not interested in either the painting or the  items?  We'd still love for you to join us to celebrate.  

Our plan is to have the painting available at a meal we are going to host to celebrate Liberty's upcoming 17th birthday. We will be sending out invites soon and will share the time and place as soon as we know for sure. 

No gifts needed, we will make sure that Libby has a few things to open. She already has so much and is so blessed in so many ways that it's time for all of us to give back. 

Co-working

Working with me, around me, near me must be a trip. My abilities and personality aside, life with Libby as my kid, in my class and on my campus, is definitely a ride. 

Rather than Libby spend her lunch in the nurses office, she's been eating with me. You can imagine how excited she is to be in my room instead of with her friends. 

The placement of the feed bag is important- a carbiner clip works everywhere. 

What? Ya need to potty in the middle of the meal?  Gotcha covered.  

You have to laugh and adapt and sometimes your co-worker will guard the door so you can deal with a 16 year old in the middle of a tantrum.  

Working with me isn't easy. I'm creative to the point of being highly annoying. I make leaps in conversations that are hard to follow.  I am driven to learning and striving to be a better teacher in a purely nauseating incessant way.  My classroom lives in truly organized chaos.  

None of these things have changed, they are only exacerbated because I parent Libby at school. 

Thank you to all of the amazing people I work with. I appreciate you all more than you'll ever know. 

Side effects birth Mary Tubaca

Libby had her Botox on November 8. By November 16 she was having immense swallowing issues. We knew this was a

possible side effect, so we had moved to smoothies and swallowing bites with pudding. November 18, I called the docs and the speech therapists. Libby had a small swallow study on Tuesday that didn't go well. Even though we knew that Libby can only have pudding consistency, the therapist freaked out when Libby aspirated with applesauce. Ugh.

We did the dutiful thing and called the docs in Wednesday and got her in for her swallow study on Wednesday. We met a new Pediatrician on Thursday evening and Friday afternoon she had an NG tube implace. Libby spent the weekend pouting and refusing to smile and go to the restroom. She was listless and really not pleasant Sunday. She was excited to go to school and yet didn't want everyone to see her with her tube. 

Monday morning, November 25, she began throwing up before 10:00. By 11: something- she had honked out her tube. 

We were at the doc that afternoon- and checking into the hospital that evening for observation, a swallow study, tests and general poking around on my kid.  

(We've never stayed at this hospital even though it's only 45 miles away from our house.) 

No bad blood results.

Failed swallow study.

Nose tube instead of stomach tube. 

Doctors here and in Ft. Worth wanted to avoid possible scar tissue and infection for something that we believe will be temporary.  We wanted the tummy tube because we were already having some swallow issues and are planning in following through with some Botox several times a year.  The path that allowed for the least long term side effects won. 

We were home for Thanksgiving. Due to illnesses our meal Thursday was Mariah, Grandma Linda and us. We had Grandma Linda's meal, as is traditional, on Friday. 

All in all a time to be grateful and to re-evaluate what is the most important. 

Introducing Mary Tubaca, Libby's lifeline and arch nemesis. 

Doesn't matter where we are that tube can still be hooked up!  

The idea that I would be pulverizing my kids food and giving her bites of pudding and taters many times a day would have never occurred to me. It's funny how the amount of planning we do doesn't really matter because stuff happens and we adapt.  I am

Grateful for the ability to adapt. 

Care of the health

After seeing several posts about socialism and communism, I am a little sickened.  My school health insurance doesn't cover half of Libby's ever increasing needs. After going through our annual review with special needs Medicaid  and being told that many children are being denied- I simply pray that it children and all children can receive the  care they need.  Giving the inclusive list of everything that is not okay with Libby is worth the coverage- even if it is hard to do. 

Regardless of the political beliefs if their parents... 

Regardless of your opinions...

Regardless of every other factor, Libby, and all special children get  the care they need.  Please put all your finger pointing and name- blaming aside and pray that all children can receive the care they--- regardless of the political beliefs if their parents.  Children, have done nothing to deserve their ailments, so why threaten to punish them because of the radical and racially driven political debating and debasing.   

Who is to draw the line in which child receives coverage?  Is it to be only those whose children can afford it? If that's the case then you are talking about hundreds of thousands if dollars of expendable income. 

Is it to be only the children that YOU choose?  Children whose parents agree with you politically? 

Is it to be children who are a specific color,relgion- of whose parents you approve of? 

Is it to be those Children whose medical conditions will not make the paperwork and their treatments more  inconvenient? 

If you believe that somewhere we, as a country, need to draw a line as to which child gets coverage, then please join me in a certain classroom I know.  I'll let you choose which child you are not willing to agree to their coverage.   Maybe it's my kid that you're not willing to help keep alive. 

The ongoing posts on Facebook make me sick to my stomach.  I wish people would simply work harder at being empathetic and get over themselves. Every child deserves the chance to be happy and healthy.  Regardless.  

And if have offended you- I apologize.  

Fun

Last Thursday, 10/17 we left home and drive to Ft Worth.  We had a check in appointment with Dr Hottie.  We'll be going very soon for the Botox she needs and meds were increased.  We have to come to terms with the fact that we will give up some cognition to keep her comfortable.  Having a loopy and sometimes fussy kid who isn't in pain is worth it.  Dr. Hottie also reminded us that out job is to focus on her quality of life. Exactly what we're trying to do.  Just don't want quality to mean at home on the couch all the time.

Just a little celebration last weekend 10/19 for grandma Linda's birthday. The kids played dress up while we talked and laughed- what a great evening! 

Xavier working hard to

Make a beard like

Jeff's! 

Fun with the costume makeup!

Baby Thomas brought his family down last weekend- great to be around them!

Jenifer and Caebhin were also here at the house.

Libby's Fall choir concert

was 10/21.   I am so amazed at how well our choir is doing and the kindness of the participants.  Libby has a couple of young ladies who make sure she is wheeled where she needs to be and that she has the materials she needs. 

Libby rocking some therapy!!  10/22

The Halloween Carnival was a success. It is a delight to be a part of this community event. 

The classic Cake Walk did very well at the carnival.

Mariah and Tyson were in attendance. They even took Libby home a little bit early so that way she wouldn't get too tired.  Plus, they got some quality sister time.

There is a beauty to small town involvement and living.  Growing up in a large city and high school I missed a lot of opportunities for volunteering.  The role of parents in a small town is vital in that they keep everything going.  I've seen such a difference in the atmosphere where people are involved in the school, the churches and the community as a whole.

 I think that one of the greatest compliments to a persons life would be to needed in their community during each stage of life.  I am grateful to have been allowed to take part in what is our sweet community of Happy.  

Swallow Test

Three weeks ago we were supposed to be getting some Botox injections for Miss Libby, but the doc cancelled.  So, we headed on to our swallow study, including barium and a sweet radiologist.  

We were able to use Libby's chair and just wheel her right in.  

Getting to watch her insides while she swallowed was super weird and cool! 

I had a fabulous conversation about the ongoing progression of the attack on Libby and her brain with the Speech therapist.  She is not showing immense amounts of the tell take signs of Parkinson's swallow, so with continued feeding adjustments we will

Be fine.  Many blessings!