Wednesday, July 15, 2009

Prayers and Thanksgiving...

I just talked with Brianna's mom. They had a scare with her last night. Please keep her in your prayers as they try to discover what is causing her spells. Brenda will be making her own post soon. It is such a reminder that with Trisomy 18 one minute they are fine and the next you can have the scare of your life. To visit Brianna's blog just click http//www.briannagiveshope.blogspot.com/

Also, in thanksgiving for Alyssa who has turned one year old today. To get thru this first year is huge. It never means our babies are safe, but it just helps defy those odds that 90% to 95% do not survive their first year with Trisomy 18. Please pray for Alyssa's family as they continue to cope with this diagnosis and the trial they will continue to face. To see Alyssa click here http://www.wndrfllymde.blogspot.com/

The following pictures are in honor of Alyssa's birthday. They ask that we wear T-shirt with money donated to two organizations and a sweet bracelet for Annabel and one for myself.

A PURPLE "A" FOR ALYSSA


T-shirts sold for Alyssa

Sweet bracelet that was also sold for Alyssa

It has been so nice to be back home. Last night all the kids were home and we made homemade pizza and most everyone helped. We all talked about our week at the beach and how excited we are to have my brothers family coming. He has two young children that we will get to spend the entire week with. My parents will also be coming for the week. Tara will have to work and will come up on the weekend. I am hoping my sister will take some time off during the week and come up for more than just the weekend. My nephew and his girlfriend will not be able to attend as the same for my brothers oldest daughter. We would love everyone to be there but we understand sometimes things come up.
We traveled to Houston today for Annabel's follow up appt. with her urologist. With the onset of the UTI last week and the IV antibiotics it was my hope that the decrease in her output into her diaper was due to the infection (pseudomonas). My hope was that when the antibiotics took care of the infection that she would have all those huge wet diapers back. Since we have been home the last couple days this is not happening. My homework from the appt. today is to catch her as soon as she wets her diaper and then cath her immediately to check her residuals. (With Annabel this is not that hard since she strains and then her diapers becomes so hot with the urine). So according to the doctor he wants less than 30 mls. for residuals. The last two diapers this afternoon upon returning have been 50 and 51. Each cath has been 120 and 102. With the infection gone(culture came back negative upon finishing the antibiotic) she still is not emptying her bladder. He wants me to check this 6-10 times and see if this is consistant. He did speak of the vesicostomy today and reminded me we knew the dialation was temporary. Actually, I knew that but thought we would get the 3-6 months out of it. But I don't want to forget how well she did during her surgery. God was totally incharge and He carried her along the way. My twins traveled to Houston with me today for her appt. On the way home as we were talking about what the doctor said and what we are going to do now to see what direction we will be going in with her. One of the girls asked the question "do you think what we are doing to care for Annabel is fair?" Also she said "do you think that we are making her have more pain?" It gave us a great chance to talk about how when I make these decisions that I am trying to make her comfortable for the time she is with us. If we weren't doing these things like, bladder/kidney, bowel, feeding tube placement that she would be very uncomfortable. It lead us to talk about bigger issues that could one day surface like her heart, kidneys or the possibility of Wims tumors(cancer) and we talked about doing things that would hurt her and possibly not change the outcome. Well it was deep but I was glad they were able to share what they were feeling. I think we all feel this and may not let ourselves share with each other. I will continue to whine about this thing I dislike so much, the monster called TRISOMY 18!

Tyler with Annabel

Tara with Annabel

7 comments:

Kelly said...

what amazing children you have raised cathy. the fact that they are initiating these types of conversations just speaks volumes for the great people are and the caring adults they will become. i'm sorry annabel's still having bladder issues. hopefully a solution will be presented soon. give the princess big hugs from me & kaiya.

Kathy said...

Glad you girls have been home!
Pizza night sounds like a great time! Glad you could all be together.

Speaking of being all together, your beach trip sounds like great fun! In our busy lives it is nearly impossible to get everyone together.

Sorry to hear about the urine retention. Disappointing for sure, but on a scale of one to ten, not a ten - thank the Lord.

Your conversation with your beautiful girls was good. You make wise decisions for Annabel and I know that's with much prayer (yours and ours). Your heart and intentions are always in the right place.

Sadly, if we do move quickly to socialized medicine those decisions could well be taken out of your hands.

I will check on the little ones you mentioned. Happy birthday to another sweet little girl!

I think this picture of Tara and Annabel is my favorite. Such joy and love. They are beautiful girls!

Enjoy being home. Praying for total boredom!

Love you girls!!!

Anonymous said...

Cathy,

Your kids are the greatest. I love those pictures too. Thankfully all of the decisions are between you and the doctors but it is true, as Kathy says, that socialized medicine might change things.

In the UK, I found a newly published manual for intensive cares put out by the Nuffield Bioethics; the big name in bioethics, as I understand it. Here is what they wrote about Trisomy 13:

The
majority of children (80–90%) with this syndrome do not survive infancy, and long-term
survivors have not been identified.

I wrote to them and provided publications and family stories to convince them that this statement was erroneous. The refused to change it.

Trisomy allows for an easy label to be slapped on children with an associated treatment plan.

Up here in Canada, it has been 4 years since Annie died, and we still don't have the final medication report. The cover-up, which goes all the way up in the ranks in the government.(because of course the government determines the policies and limitations to begin with)Presently, we are at the level of Minister and he will not provide the missing medication report or the Coroner's report that supposed accounts for the medications. He refused to order an exhumation such that we might know how Annie died. (We have no idea and she wasn't even on life support).
We even have a doctors letter of support and a letter from the "justice for Annie" facebook group with 270 members which include some of the most well known names in disability. No effect.

This is socialized medicine. Nobody in this country will lose their home if they become sick and that is very good, but there is a definite cost to pay that is borne by some. Annie was one of those who paid.

Barb
www.anniefarlow.com

Alyssa's Mom said...

Kathy you are too sweet!. I love the pictures of you an Annabel in Alyssa's encourager wear~ thank you! Would you mind if I copied them?

So glad to see the smile on Annabel's face and that the two of you are home. What a strong sweet girl you have. Kuddos to her loving family as well, Kathy you are another model mom for me as I walk this journey.

Blessing to you!!

Alyssa's Mom (Trish)

Alyssa's Mom said...

CORRECTION: forgive me Cathy I know you are with a "C" and not a "K".

Anonymous said...

Sorry that you had such a frustrating visit with the doctor, but at least once you take these steps he will not be able to argue that this was not something other than a urinary issue.

I am sorry that you and your precious family are having to deal with these kinds of issues. You are all an inspiration to families everywhere who face such medical issues due to your faith and your honest, loving communication.

Although I greatly respect your blogging community, I would advise that you do not allow yourself to start worrying about politics right now. Annabel has access to wonderful medical care, and the best pediatrician in the world.I know that you are facing tough decisions, and are trying to map your way through this journey.

Please don't allow yourself to be sidetraced with the thought that decisions regarding Annabel could be "quickly" taken out of your hands due or that her prognosis is bleak due to the possibility of socialized medicine, etc...

That kind of worry at your stage of the game will not help anything. God is in charge, and He will show us the way. You need to stay strong, focused and take each day at a time with a big breath and God's arms around you. Do not let anyone or anything steal your focus, or inject stress about situations that are out of your personal control. As I tell my kids, "be a filter, not a sponge"! And as a WARRIOR MOTHER, you must not let any defeating thoughts or attitudes shake your faith or your course. God is bigger than politics, medicine, etc... You work for him, and everyone else is only your support staff :)!

Ok, enough of MY soapbox for awhile :)!

We love all of you, and can't wait for you to call with a good date to play! :)

Love,
Lisa

Mummy Pauline said...

Keep posting those beautiful smiles from Annabel.
Take care ...