Monday, December 19, 2011

Simple message...

Our gospel in church today was simple. I love a simple message especially with how I become distracted with Annabel during the Mass.
This last week of Advent we need to all slow down and realize the real true meaning Oh wait, we should always remember this real true meaning! But if I am honest I get all crazy with buying the right gifts, making sure I have exactly the same amount for each child no matter how old, trying to keep up with my house and trying to be there for all the family. I am not going to let this week/message escape me this year.I still am amazed how much Annabel's life has touch us all. Simple, happy and full of joy....
Just a few picture with our Santa at the mall this year on her class field trip. She was a little reserved this day as she was hurting.

Tuesday, December 6, 2011

Pictures and update in the life of Annabel...

I want to begin by thanking our sweet Jesus for answered prayers so far. My prayer was that she would stay out of the hospital for December. I know it is early but I am grateful that we are managing everything from home. I am so lucky that I have three great nurses that help me out. I wouldn't be able to do it without them.
Overall, Annabel is doing ok. Most days she is able to attend school and her therapy. Due to her liver not doing so great she is down to only 12 hrs. but it may not last. She seems to need more fluids. The 12 hours is new and we will see how this hold out. Her fevers are still considered her normal low grades that range anywhere from mid 99's to mid 100's with the occasional 101. But we aren't medicating this temperature and we do blood cultures most weeks to make sure the temperatures are harmless. Annabel's liver enzymes range anywhere from the mid 100's to the 900's. Up one week and down the next. She itches almost all the time. Many days she rips her dressings off with the itching and we have double the dose of Benadryl. We are assuming the TPN is what is causing her liver issues which in turn cause her itching. She has to be watched constantly for the itching. I am thankful for the 3 nights of nursing so I can truly sleep and not worry. Annabel has been free of IV antibiotics for over 2 weeks and this is a record in a very long time. (Shhhhh!)
Our Thanksgiving was great with the family over at our home. We love how busy the house is and we get to spend time with my brothers family who is from Dallas and my sisters son Corey and Molly from Austin. Hoping that each and everyone of you had a wonderful Thanksgiving.
You can see from the pictures that Annabel is happy most days. Somedays she is just tired from maybe not sleeping so well. She desats so much now at naps and nighttime. So her sleep can be quite interrupted. She does sleep with oxygen and this helps.
Thank you so much for continued prayers that Annabel stays infection free from central line, UTI or really anything. My biggest Christmas wish is for Annabel to be in our home for the holidays with all the rest of the family. Have a wonderful Christmas season and let us not forget the real reason....

Thursday, December 1, 2011

Happy 24th Birthday Tyler....

Tomorrow my youngest son will be 24 years old. Where did the time go... He was born 8 weeks early and so tiny when we brought him home. He will be at drill tomorrow until Sunday so tonight we celebrated his birthday...

Sunday, November 27, 2011

A very special visitor...

Today Annabel and I had a very special visitor stop by. Brenda is the mommy of a very beautiful Angel baby named Brianna Botts! Brianna went to Heaven when she was 28 months old. We were able to meet her parents and Brianna in Houston (her father had business in Texas) and spend time together. It wasn't too long after that Jesus called her home. She was also born with Trisomy 18 and passed away from Pulmonary Hypertension. She blessed so many all over the world.   Her blog address is Brenda and I have tried to meet up a couple of times but it has never worked out until today. She came to Texas with a wonderful friend and they were so nice to bring her by to visit. Thank you so much for making this possible. AS you can tell by the photos, Annabel loved her visit.
The following photos are of Brianna and Annabel back in 2009. 

Friday, November 11, 2011

Annabel says "Thank you..."

Annabel wanted to tell her brother, Tyler, and all soldiers thank you for their sacrifice and commitment to our country. If it were not for you, we would not be able to live and enjoy our freedom.

Wednesday, November 9, 2011

What kind of g-button do you have?

Annabel has a Bard mini one non-ballon gbutton. She is having this changed out very often due to leaking when we open it. It doesnt leak below it just when opened. If your child has a g-button please share what type and why you like it. I realize the balloon buttons are easy to change out and have seen it done, but I like not having to worry about it coming out. Thank you for any information you can offer.

Saturday, October 29, 2011

A very busy day and a tired little girl...

Today was a very busy day for Annabel! First we met our cousin Callie who came in from Oklahoma and Carleen from Houston. We met for lunch with my mom, my godmother/aunt Eva, my sister and two of her high school friends,Candy and Michelle. Tara, myself, Annabel and Donna our nurse had a great visit with family. She was in her element with all the attention. Thank you Callie for coming in and making time to visit with us!
This evening we attended the ARC Holiday Cards for a Cause kickoff dinner which honored the artist of the Christmas card that went on sale today. This was Annabel's second year as an artist. It is a wonderful evening and again she was showered with so much attention. Ms. Ann, her teacher who always helps her create her card was there, and sat right next to her, so you can imagine how happy Annabel was. I actually brought my camera to lunch, but failed to remember to take pictures with Annabel's family. But tonight I remembered to take pictures even though they aren't all very clear.

                    Annabel the Artist     

Annabel got to meet Jay Bruce, who plays for the Cincinnati Reds 

Annabel enjoying Ms. Ann's company at dinner

Annabel's Christmas Card for 2011 (the letters PEACE are her little finger prints)

Annabel being honored as an artist being presented with a framed copy. A very proud mommy!

Annabel getting a HI and some sweet attention from one of her pediatricians Dr. H!

Friday, October 28, 2011

Surprise visit at school and more pictures of her week...

Tara decided to come home for a visit this weekend. She had two classes cancel and came in early and was able to surprise Annabel. Tara has not seen Annabel since she was in the hospital there in Houston.
Annabel's class also visited the pumpkin patch for their field trip and then the sunglasses picture from today was for drug free week...

Tuesday, October 25, 2011

School days in Pictures...

                                 Annabel dressed in Pink for PINK OUT Day for Breast Cancer!

                                                Went to school all day and had a great day!

Life with a central line....

Annabel is doing better, getting stronger everyday. She goes to school most days and is able to basically stay all day. School is such a happy place for her and I am very blessed that she is so loved and well cared for by everyone.

She is getting back into all her therapies. I am also so lucky for her dedicated therapist who continue to work with us even though Annabel misses so many appointments due to her illnesses.

I ccontinue to have three great nurses, Rebekah, Debbie and Donna that makes sure she gets great medical care and so much love and attention. I feel guilty so much of the time that I have so much help, but Annabels needs have changed so much with this central line...

Central lines....what can I say? It fills my mind almost daily. My feelings are so strong that she must get off of this central line. The reality is that she cannot survive without it. So the very thing that sustains her, can so easily take her from us. It has been 18 months, 1 1/2 years of TPN/central lines. We thought this ride would be so brief, basically to rest her gut.
So just this past Thursday night when her fevers rose to 102 and she began to have chills, I froze. Mel looked at me and said you better go pack your bags. I really couldn't imagine going back to Houston and the thought of what Annabel has just gone through. Annabel was very congested and my prayer and wish is that the fevers were coming from the cold/congestion. So she made it until Friday morning and we went to see Dr. B. We did blood cultures and by yesterday we knew her blood was clear. Thank you, Jesus!

I will never stop praying for her tummy to work again, but the reality is she probably won't be able to eat enough to get the central line removed. Her liver continues to be sick. This will not improve as long as she is on the central line.

I have to keep my thoughts on the fact that we have so much to be thankful for with Annabel. She continues to show us how to live life. It is simple in her book. She wakes with a beautiful smile and a heart that overflows with goodness and love. If Annabel could speak I know that she would thank everyone from her family very close by and far away and all the friends who faithfully continue to pray for her from everywhere.

Thursday, October 13, 2011

Just enjoying home...

A brief update to say Annabel is getting back to herself. yippee! On Monday she finished the weaning process of the Ativan for withdrawals and we are so happy.

She returned to school yesterday for 2 hours and will go longer today. She will also attend speech and PT therapy this afternoon and do what she can.

She was tested last week for blood and urine cultures. The blood grew nothing (very thankful) and the urine grew Klebsiella. This was the bug that was in her blood when she was in ICU. She is now on Gentamycin IV's at home.

Overall, I am feeling like Annabel is getting back to herself. So full of smiles and joy! It is so hard to believe that just a few weeks ago that she wasn't expected to pull through. With each smile and sweet noises she makes, I thank Jesus that He has granted us more time with Bella and we are beyond grateful.

Saturday, October 1, 2011

Yes we are home...

I guess I thought I posted that we were released. She came home mid-week and we are so happy to be home. She has slept well in her own bed. You can just tell she is so comfortable in her own place.
Annabel is still needing prayers. She is still very weak and we knew this recovery wouldn't be quick. She continues to run fevers everyday. They stay mostly 100.5- 100.9. The reason is unknown, but before being discharged they ran blood cultures and it was no growth.
We are doing some feeds but her formula runs straight through her and looks like she isn't absorbing. She is still having to be weaned off the medicine. She is taking Ativan and she seems so sad at times during the day. This is very unlike Annabel. Her voice is beginning to come back but sounds like a tiny kitten. They weaning will be discontinues on October 10th and I cannot wait. Her breathing pattern are still different where it looks like she is uncomfortable with her breathing.
We will be seeing her GI doctor Tuesday and hoping for more answers as to the fevers. These fevers were happening prior to her going into the hospital for a couple months.
I will post later on this subject, it isn't pleasant to speak about. But is very obvious that Annabel has stool coming from her from opening. I have asked doctors to look into this and was told this was very unlikely but it is happening so often. If this is an actual problem Annabel will always be infected. This could be an explaination for the continued UTI's.