Thursday, November 1, 2012

Trick or Treat....

Annabel and the Great Pumpkin... Ms. Ann always has each student carve a pumpkin.
 
Annabel and Ms. Ann (her teacher) as witches...

Annabel a/k/a Janis Joplin

Kim (OT), Annabel, Debbie (our nurse), Jennifer (PT)
doing therapy during her Halloween party....  

More OT with Annabel during her carnival...

Thank you so much to Debbie, Annabel's sweet nurse and her teacher Ms. Ann who were so creative with Annabel's costume. Anyone will tell you that knows me that Halloween isn't my favorite holiday.  Debbie used things that we had at home or that Ms. Ann had at school. It was so fun to watch it evolve. Annabel loved all the attention she was getting as Janis Joplin!

Tuesday, October 30, 2012

You are in our prayers...

For all of you who are on the East Coast or have family or friends we are praying for you. Here we have hurricanes and can clean up maybe with some heat, but you have the snow on top of all this. We are praying for a quick recovery to all out there.

Sunday, October 14, 2012

We will miss you Sarah....

Sarah,
I wish I would have know when you called in sick on Friday that it would be the last time we would talk.
Since they called us yesterday to say you had been killed, I keep wishing I would have told you how much I appreciate your work with Annabel.
As I got to know you over the last few months, I could tell you had that mothers love. You talked with such love for the son you lost in 2010 and the love for your oldest. You were very proud of your boys. What great accomplishments, both Eagle Scouts, your son in Heaven appointed to Westpoint!!! Of course their accomplishments were many and I know you couldn't have been prouder. Your grief, as we spoke of the loss of your son so recent is the only peace I am findi
ng in your sudden passing. I can only imagine your smile and your son's smile as you meet him again face to face.
God chose a good one when he called you home, but I struggle with the violence that brings you home. My prayers is that our Heavenly Fathers grasps was sudden and that you only felt his peace and comfort.
Some of the things I will miss the most is your soft, gentle voice. I loved hearing you sing to Annabel during her morning bath as you got her ready. I loved the excitement when you downloaded Pandora Radio on your cell phone so you could play Annabel's favorites anytime she wanted... I loved how if I mentioned anything medical associated with Annabel's care you immediately googled it and found videos and information. I loved as each day passed and you became more familiar with Annabel's normal or no so normal you were so proud. I even loved how when Annabel was sick you were so genuinely concerned. I loved so much how proud of her accomplishment you were in her therapies. Probably the highlight was when you came in the back door after school and the smile on your face telling me what a great day Annabel had. You told me details that allowed me to almost see her task, her interactions. I keep going back to read my text about the reports you gave me each day via our cell phones. The little pictures you sent to me from her day at school. Oh, let me not forget your first experience with her blowout in her diapers. You just laughed and kept showing back up....
Sarah, I realize this isn't about me or Annabel that will miss you, but I am praying constantly for your family and your son who is left to deal with another tragedy in such a short period of time.
Thank you Sarah for giving of yourself. You were a servant and you served well.
Rest and feel the peace as you hold your son in your arms in your Heavenly home.  
Love,


Cathy and Annabel

Monday, October 8, 2012

Annabel Grace meets Annabel Leigh

We traveled this weekend to watch Tara play in a tennis tournament in Dallas.  I was very lucky that our nurse Debbie offered to travel with us. The tennis was great to watch and fun to be with old friends. The tennis format was team tennis and it was mixed doubles.  She played 2 matches a day and I was able to leave Annabel sleeping in the hotel with the nurse and return early afternoon. The first afternoon we went out to my brothers and was able to see my niece Shauna who is wonderful with Annabel. She was leaving for a church camp but was sad that she couldn't be there longer to visit. James my nephew was there and we took Annabel for a swim before the cool front arrived. Thank you to Carl my brother, who thought ahead to warm the water for us. My parents had traveled to Dallas on Friday and were staying at my brothers for the weekend. Carl and my mom prepared a great dinner for us. Thank you mom and Carl it was yummy. Megan, my niece and her friend Matt came for dinner and we enjoyed the company. Carly and Colette came in for an unexpected weekend and stayed at the hotel with us and made it in time for dinner. With all of this activity and attention, Annabel was in heaven and full of smiles!

Now for a highlight of the weekend, my Annabel got to meet our blog friend Annabel Leigh. She has full Trisomy 18 and is 3 years old. I remembered they lived in the Dallas area and was surprised to find they were only 3 1/2 miles from the hotel!!!! So we scheduled to meet her Saturday afternoon. I had promised I wouldn't stay long. I held her sweet little Annabel Leigh and just didn't want to leave. As always when we meet another Trisomy 18 child there is so many similarities and is so hard to share in a short time. We didn't get to meet Jorge, her daddy but we did meet her two years old sister Ava. Thank you Carrie for being so available to meet with us.

My parents...

Carly, Colette, Megan (my neice)


Megan playing with Annabel...


Annabel and Mommy swimming any chance we get...


We are actually in the hot tub since it was warmer than the pool!


Annabel playing with her cousins, James and Shauna

Nurse Debbie, she made this trip possible for Annabel to travel with us!Thank you Debbie

Annabel was waiting for Shauna when she returned from school.


This is Annabel Leigh!! We have followed her blog for a very long time and so happy to have the opportunity to meet her face to face! 


Annabel Grace and Annabel Leigh meet for the first time...

Me, Annabel Leigh, Annabel Grace, Carrie and Ava ....


Monday, September 24, 2012

NO quite sure what is going on....

Annabel was sick almost two weeks ago with high fever, cough and much congestion. She has lots of loose stools.  She was placed on Zithromax and they fever subsided along with the loose diapers. But her cough and congestion continued so she was placed on mucomyst, changed from albuterol to xopenex. Her mucous is still very sticky, almost like glue... She has it coming out in her stools, up through her mouth with the gagging/coughing and out of her g-button. She has an excessive amount of gas. Her tummy has begun to distend. There are some questions to maybe it could be her formula (ElaCare). She has trouble with most all of the disacarides. Last time we talked with GI prior to her surgery, we were told ElaCare is basically the end of the road, that Annabel had tried most everything, including the RCF that was carb-free.
We are going to give her a little more time but she seems tired and mostly disinterested in all the things that made her the happiest.
She is still getting the 1200 mls. of Ela Care except when she was the sickest a couple weeks ago which we had to switch to pedialyte.
Wish I had something more inspiring to write but it is hard to see her not feel well and not know how to help her. We had to cut back on the swimming till she felt better. Hoping we get to swim before it get too cool.
   

Wednesday, September 12, 2012

Needing to be Chloe like....



This is the first time Annabel met her cousin Chloe

This is the 2nd time she has seen Chloe














I have been thinking about the times Annabel has met her sweet cousin Chloe. She is actually my first cousin Terri's daughter.  Chloe is 6 years old.  So I guess that would make her Annabel's 3rd cousin. But in my crazy Cajun family our cousins were like our best friends.  Before pre-schools, play groups and daycares our mom would get together and us kids would play and spend time at each other homes. Also my grandparents lived locally so it was nothing for my grandparents to have us all over together and we could play for hours with each other. 
Chloe's parents are a good church going family and aren't afraid to share their faith. A couple of months ago Chloe asked her mother about Annabel. She said momma "when am I going to get to meet my cousin Annabel who I always pray for?"  So Terri text me and told me what Chloe had said and asked could they come see Annabel one weekend for a visit. We arranged to meet on a Sunday afternoon at our home. Chloe walked into our home and it was like she had always know Annabel. She wasn't scared of any of the tubes coming out of Annabel's body. With the sweetest child like attitude she just picked up some toys and began immediately interacting with Annabel. This went on for a few hours. She asked very sweet, innocent questions about Annabel and about her limitations. But she never stopped treating her like a "normal child." She threw balls to her, she would bring toys over, sing to her and just play!
This was our first meeting....
This past weekend another of my cousins had a baby shower at my moms house. I knew it would be crowded, lots of people and maybe germs, and my excuse was there really wasn't room for her wheelchair....
My sister called and reminded me that people wanted to see her who prayed for her in the past but didn't get many opportunities to see her. After an evening of thinking I decided that my sister was right and that I would load her up for the trip to grandmas for the shower.
After about 30 minutes of arriving, Annabel was sitting on the couch and being entertained by adults. She was happy as she always is....
Then the doorbell rang and the next thing I heard was a child like voice spotting Annabel when she walked into the room. She said "Momma Annabel IS here!!!" She played and entertained Annabel the entire time. She clapped over and over and made Annabel smile from ear to ear. I was happy I brought Annabel so other family members could see but what struck me most was how Chloe views Annabel....
You see Chloe doesn't see Annabel as handicapped, sickly, a child of a different race. Chloe truly doesn't see Annabel as any different from herself. Yes, maybe she prays a little more for Annabel than others because she needs more prayer.
My thoughts lately have been that I wish I was more Chloe like....My prayers is that we would all see each other like Chloe does. Really, no different from each other, that we are all created by God no matter our race and that some of us do need more prayers than others.
Kuddos to Terri and Ken her parents. You are doing great things with Chloe and she is teaching an old dog like me, new things!   
   

Wednesday, September 5, 2012

Small bowel surgery....

 This post is in reference to Annabel surgery in July. I have struggled to post these pictures but if you are a parent to a special child then these probably won't bother you.
Annabel went into the hospital for an ileostomy on July 17th. Annabel's surgeon felt that if she was to ever have a chance to take in food again she would need to have her colon rerouted. He felt it was her biggest issue she was facing at this time to get off the TPN.
He said after making the incision he was just going to look at her surgery (bowel resection) her had done in 2009 to check out adhesions. This is when he found "the growth"! We are so glad he looked around prior to doing the ileostomy. So the first picture is of Annabel's tummy as it looked most everyday for the past year or more. It had become very distended and firm. This was without food at all.
The second picture is of her belly post surgery. Her tummy is so flat! Then the following picture is of "the growth" that had  taken up residence for however long. We knew her bowel loops were filled with air and most always dilated. But this we were surprise to see and wondered how it fit into her small little body.
Annabel is eating now in her g-tube. She is on ElaCare. Her total calories she needs are 800 and her fluid intake is 1180/1200 per 24 hours. Annabel really has never tolerated overnight feeds so at this point she gets very little late at night. She does have minimum gagging/retching which is so much better than before. Her surgeon says she may eventually need the ileostomy but for now we are enjoying being hooked up to as little as possible. We eventually hope to get down to four bolus feeds daily but this won't happen for a will according to GI.
We did see GI this past Thursday and they were very pleased with her progress. She will still experience motility issues but they don't seem as severe with taking "the  problem" out.
We see day by day Annabel recovering and see hints of her normal from over 2 years ago.
Right now Annabel's life seems easy. I don't ever want to forget the last two years and I really never want to revisit this stressful time.
A central line has changed our world. First we had to enlist the help of 3 great nurse (very thankful for their help through a scary time). The stress from just each and every time Annabel had a fever of 100.5 and over. I referred to the central line as a time bomb. One minute you could relax and make plans and in the next instant you were being transferred to a hospital. Any infection in your line (blood infections) can be life threatening. Some of the antibiotic that she had to be on had terrible side effects. The hit your liver suffers with all these infections and just the TPN/Lipids is bad enough. Even though some saw Annabel's smiles when they said Hi to her we saw a very tired Annabel. She just didn't recover like her old self. Each time she became weaker and we saw through her therapies she couldn't do what she had worked so hard to accomplish prior to her central line/TPN lifestyle. Yes it helped her survive for the last couple years but it brought her closer than ever to not surviving.
Prayers were heard each and every time. I wish I could thank each one of you personally but through all the stress I have become lax in my duties to respond to each comment or even posting on the blog.
Hoping that I will posting more pictures of her sweet life. I love showing her off of what she can really do through pictures not my jumbled words.    
Someone asked about ultrasound if it didn't show up. Annabel has had so many KUB's, abdominal ultrasounds, and several CT scans but do to so much air almost nothing could be seen. She was constantly diagnosed with obstructions...just wanted to add this.


You can see in the picture to the right the doctors hand holding the growth and the small bowel that was removed!

Tuesday, September 4, 2012

Central line removed...

As of this past Thursday Annabel's line was removed. It was bleeding out of the insertion site and it was agreed that it was a very risking line to leave in her arm. We have swam everyday and enjoying not having the risk of fevers, becoming septic, bad liver, etc.
Here are a few pictures but I have some with her swimming and with her sisters. Will download and add them soon! I will also post about what was found in her tummy.


This is Annabel and her teacher on the first day of school...
This is my youngest son who came by to visit Ananbel in the hospital during her last infection due to the central line.

This is her brother Derek and his wife, Linzy, who came to visit after she was released from her surgery.

Annabel just making rounds in the hallway at the hospital!

Wednesday, August 29, 2012

I failed to post...

I thought again I followed up to say we are home and she is making progress. We are thankful that her tummy is accepting the formula most of the time. Thank you for continued prayers. I need to follow uonwith a few pictures!

Wednesday, August 8, 2012

Yeast is growing in line....

That sums it up! They pulled the line and began fungal antibiotics.hoping soon to see fevers go down and an overall improvement. They have just draw her morning labs do hoping and praying her liver shows improvement also. Thanks for continued prayers for her organs to be protected from this fungal infection that is going through her blood stream.

Tuesday, August 7, 2012

She just needs a break...

Annabel was transferred to Tx Children's around noon today with a high fever. It began with a call to GI who wanted her admitted for a possible central line infection. I couldn't argue with them because she just wasn't right! It didnt seem to be her tummy, she has been on two different IV antibiotic for a UTI. Supposedly as of last week her liver enzymes had come down to the mid 200's. She didn't have a respiratory that we could tell.    We are being admitted when a room is available. We will wait for cultures of her blood and urine.
So far all that has returned are that her liver numbers are over 1100. Maybe tomorrow will hold some answers. As always prayers are what carry Annabel through!


Friday, July 27, 2012

Yes we are home...

I am so sorry for not posting sooner. We got home Monday evening. She is doing better. We have opted to not try feeds until we see the GI doctor in a couple weeks. She continues to have some spells with crying and pain and high heart rates but trying not to use pain meds. Her liver numbers jumped sky high hoping it was the meds given during her recovery. Waiting to see this Tuesday if labs bring them down. Her tummy is so flat...probably never in her life has it been so flat. We are still in shock about what and how large the growth was that was removed and just so thankful that Dr. M decided to explore prior to beginning the ileostomy. Thanking you all for prayers again and carrying Annabel through this surgery and recovery...

Friday, July 20, 2012

Update

Sorry I have put updates on Facebook but it is harder to update blog. She is still in PCU. She is still require her pain meds and she is now I oxygen around the clock. Confusing since she didn't have it the first 36 hours after surgery. She sleeps most of the time and doesn't want to interact much yet. But overall I see her eyes open more and not wincing in pain all the time. They did begin to try to feed her 15mls. Of pedialyte twice last night is that is good. Will try to update later.

Tuesday, July 17, 2012

Change of Plan.... No Bag!!!

Thank you for prayers. When Dr. M opened her, he saw a bad part of the small intestines that had a growth and another part that had totally twisted and folded over on itself. So instead of an ileostomy he removed the growth and resected her bowel further. He isn't sure that she won't need the ileostomy in the future, but for now we are so thankful. He also doesn't feel that the growth is cancer. Yay, no bag... We are waiting to see her in recovery. She will be moved to PCU and should be out in 3 days.

Wednesday, July 11, 2012

Surgery scheduled...

Annabel will be having her surgery, loop ileostomy on July 17th. There are two ways he will approach this and we are hoping the more conservative method is what will work. She will end up with a bag. I had so many concerns about this surgery, including did she really need it. In the last couple of weeks Annabel has been going through some very painful episodes and her baseline is getting lower and lower. I know she can't go on this way or basically she would lay in her bed all the time. We still get some happy, wiggly times but they are shorter and much less.
So next week, I am ready. I pray that she tolerates the surgery well and that we will be home by the weekend.
I will be updating from the hospital when possible. Again, thank you for your continued prayers. 

Thursday, June 28, 2012

Good times and good news...

video
Just a quick video to see how Annabel is feeling better and more energy.We are so thankful. When she came in her hemoglobin (was 7) and is now over 10. Higher than her baseline. We are going to have to watch it to see if she has a bleed again. Her stool from early morning showed negative for blood. Some of the thinking is that she possibly has an ulcer and will be treated accordingly. There maybe a scope again soon to see but it will be outpatient. She did have a nasty looking urine this morning and waiting on results to see if it is anything but it will not keep us here. They are trying to arrange for someone to come put her stitches in her picc line (they have come out) and then hoping to be release this afternoon/evening. Her doctors have been awesome and they know without me saying how anxious we are to return home. 

Wednesday, June 27, 2012

Filler' up....

Annabel was admitted last night to the hospital in Houston due to her low blood levels. Also yesterday at home her stools were very dark. When they tested her stool her at the hospital they found it to have blood. So today they are tanking her up. This should give her some of the energy she has been lacking. Yes she will still need surgery but that is not why we are here. We are really wanting that scheduled with a certain surgeon and anesthesiologist. They are hoping to identify where the blood is coming from or see that it has stopped, give her the blood and then discharge her. Will keep you posted and as always your prayers are appreciated!

Sunday, June 17, 2012

Very little Internet...

Thank you very much. We met with surgeon and he is incredible with her and me. She will end up with a bag on the outside but he says it will be easy and she will feel so much better. I will blog soon but at the beach right now and very little Internet. Your thoughts and prayers have been heard and answered. I feel so much peace and he is going to be very conservative with Annabel. No date set yet but will blog soon.

Wednesday, June 13, 2012

Wanting to be positive...

I have sat down at my computer to write a post many times. It drives me crazy when I am reading a blog and then there is no post for quite a while. After a while I stop coming to read assuming there are no new entries.
I keep thinking if I have nothing uplifting or positive I need not write. But tonight I come (again) asking for prayers. Tomorrow we see our urologist whom we haven't seen in a while. Of course this doesn't mean Annabel has been free of infection, as she is on antibiotic most of the time. For some reason Dr. J seems to just become frustrated with the fact that we have to treat her UTI's  due to the risk of the bacteria migrating and infecting her line. His answer is to just pull the line and remove her of TPN. I so wish I could do this. We have tried twice since Christmas but with no luck.  But we will see him anyway as she need to have a CMG.
Annabel has become very uncomfortable as of late. These episodes are happening more often. Some of them are fairly severe. They do pass sometimes taking days to actually resolve. When we saw her surgeon in late April his reply was until you remove her large intestine she will never eat again. He says her large intestine is acting as a brick wall and therefore won't allow the small intestine to empty. He has reviewed all her scans, xrays etc. and he has actually been in to remove or resect parts of her bowel before. The GI doctor wanted to try one more regime of medicines to see if something would increase her motility. He says it was his last shot and then if nothing worked the surgery would be the option. About 10 days ago she had a terrible weekend with so much pain. Lasting longer than others previously. She did end up in our local hospital. The cat scan revealed megacolon again, last episode was in April when she was flown to Houston and it resolved soon after arriving. There are many terms that are thrown out there each time, like obstruction, psuedo-obstruction, ileus, toxic megacolon/functional megacolon, twisted bowels etc. For the last few months Annabel was considered to be on total gut rest, except for the fact that we were giving her very small amounts of water in her g-tube for added hydration. Now she can't have anything in her gut until she has surgery.  So since this last hospitalization Annabel has continued to have a very big belly most of the time and higher heart rates while sleeping. She also winces in her sleep as her heart rate is rising and I know she is very uncomfortable. She is tired much of the time. She still has happy time but they are less and farther apart. Annabel has begun to pull at her hair much of the day, rings her hands sometimes until they bleed and the grinding is much more and harder these days.
So tomorrow we will see our surgeon as our GI doctor says it is time. I know she needs some relief, I was asking for some meds to make her more comfortable and of course the answer was if she needs pain meds we need to bring her into the hospital (last night) and schedule surgery right away. This is where I ask for prayer. I have always wanted to make the best decisions for Bella and so far I think I have. I have always said that I don't want to just begin cutting away on her and that when enough is enough I will know.
They question with the surgery we are facing is the large intestine will come out. But the surgeon is honest and says I can't guarantee I won't be back in for the small intestine. There is test that show that things are getting worse there also. My goal for Annabel is to eat again. TPN is not good or kind to Annabel's liver. That is why we consider removing the large intestine because it is a chance to feed her again. Once we remove the small it becomes a different game.
The above writing probably is very confusing, as to when I think about it I know I am totally confused. I do know that she will have a bag on one side when they remove the large intestine. I think ahead and worry about skin breakdowns as this can be very scary with her central lines.
What I will be asking for tomorrow is to make Annabel more comfortable through medications. I want more time to think of the procedures/research and weigh out the risk/benefit of the surgery. I sure don't want to see her suffer, ever but I also want clarity in making the best choice for Annabel. I trust the surgeon completely and he is a very kind man.
Thank you so much for your prayers....  

Sunday, May 13, 2012

Most special ladies...

I want to begin by saying how lucky I am to have such a wonderful mom. I haven't always been the best daughter but she has always been the best mother! So thank you to my momma and for loving all my children. Now to five other beautiful, amazing, and selfless women that allowed me to have my amazing family. They all have names And are known as my birthmothers. I truly can't imagine my life had God not chosen our paths to cross! So as I do each year I want to thank each one by name. Tammy you gave me my first son, Derek! It is hard to believe he is 30 years old. Our son, meaning yours and mine was born on your birthday in the wee hours of the morning. I can't imagine how much harder that was since he was born on your birthday but yet you keep your plan that you had made. I know you know how thankful and how much we love him. Denise you gave me my first daughter, Tara! This has been 28 years ago. I will always thank you and be grateful for this sacrifice you made. I know this was to be your only daughter. I was so glad when y'all met, as I believe this is such an important step. Please know that we could not love her more! Karen you gave me what was to be my last baby, Tyler. I treasured every moment with him since I knew I would not have another(supposedly). I remember the day and place where we met and that you chose us to be his parents. Even though you chose us but wanted to spend one more night with him, I so worried that I wouldn't see you the next day, but you kept your commitment to us to be his parents! He was so very tiny to me since he was 8 weeks early. Today he is my biggest of all. Melissa you gave me such a surprise of two beautiful little babies! Our girls will be juniors in college and are 19 years old. Even on our very hardest days, they always gave us so much to laugh about! Even though y'all have not met face to face, I know that day is not far off. You will be so proud of them and I know look just like them. Many mothers sacrifice to relinquish one but you let two go as you had promised. Amanda you gave birth to a precious daughter who God chose to make so special. It is when you found out how special and short her sweet life was to be, you wanted her back so badly. It has been 7 most precious years that God has allowed us to love and care for your little one. Even though some think Annabel doesn't understand but I am sure she does, so I tell her how much you wanted her and how much you love her. Please know that she is loved more in her sweet lifetime than someone who has lived a hundred years. So to all of you, who have given me the most beautiful and handsome children I say thank you and I love you for your sacrifices. It is not just on Mothers Day that I feel this gratefulness! It was each night I rocked them to sleep, tucked them into bed as they got older, watched them growup, graduated, get married, or cared for them when they were sick. I always made sure we prayed for you, that they knew how much you loved and wanted them and made sure that they met back up when it was mutually agreeable. So please enjoy your day and know that you have changed someone's life so deeply... And to my mom who taught me to love all of Gods precious children. To all of you moms out there who have loved or have shared your children with other, Happy Mother's Day!

Wednesday, May 9, 2012

I adore this little girl...


She just continues to amaze me. The fight in her sweet little body is still so alive. I was reminded today by two different people that I haven't updated in quite a while.
It is just that I get so very down when we are not able to feed Annabel. Her belly hasn't work in a good while. We had so much hope but it seems her belly just can't take it.
We have been doing testing for the last 6 weeks or so. Just yesterday we went in to GI for the test results. He had not made a contact with surgery and I was just a little disappointed. But I love our GI doctor and how hard he tries to figure our little Annabel out.
We already knew what our surgeon thoughts are. We had an appointment originally to place a button into her jujunum (sp.) but when we spoke to him last week he said he wouldn't consider this. He said very directly that he knew her gut well from past surgery and that he had reviewed all her testing. He said she will never be able to eat until her colon is removed. He said it is and has been so largely dialated that it is so filled with air/gas that is acting as a wall when her small bowel tries to empty. But he was honest and then said even if we remove the colon that we may still have to go in later to remove the small bowel as it  posses problems also. But he finished by saying he wanted to speak with GI after she was scoped which was scheduled the following day.
After yesterdays appointment with GI he is waiting to hear from surgeon. But many times Dr. C(GI dr.) has said there is one more med we could try if I was open to it. It does have some side-effects that aren't so great. I am thinking the side-effects of TPN aren't so great either. So we have a plan, we will begin it for one week, talk and possible up this first med. Then after the 2nd week if she tolerates this first med, he will begin rotating different antibiotics to try to kill the bacteria that is in her gut. We will then begin very small, slow feed and then begin the medicine that will hopefully help with motility(with the not so great side-effects). I realize this is so confusing but it is because I really don't understand it either. They will walk us through each step. Thank goodness for my nurse who takes good note and has a better memory than myself. She asked him if this doesn't work, what them. He has said a few time recently that he is running out of options. His answer to if this doesn't work was there is nothing else short of surgery. He agrees with the surgeon about why the colon isn't/can't work. He also acknowledges that the small bowel does have issues in itself. But as not to be a total downer, some will have to be removed but some maybe able to be redirected.
As we begin this regiment, I will try to find out the meds and update with the names and their uses. Tonight was our first night and I know this med is called Imipramine. We are beginning with a very small dose nightly. This med is an anti-depresant. This is so hard for me as I don't like Annabel on much meds at all. I love her personality and don't want it altered in any way. (I am willing to try this in the hopes that this regime with allow her to eat again one day and not have these surgeries that are being discussed.)   
Thank you for all those that still read. I wish I was as faithful as I once was but this seems all I can offer right now.
Annabel is continuing to battle one UTI infection after the other. She averages about 5 days free of antibiotic and then is infected again. She is also battle c-diff (3 infections in the last 4 months). It is a crazy cycle that we can seem to find that balance. Just a couple months ago Annabel's weight was 38 plus pounds and yesterday she was 32 lbs. She seems so much more comfortable even though she is on the thin side. She seems to be stable with this weight. I will try to update soon.

Sunday, April 8, 2012

Happy Easter 2012

Our Easter was very quiet. It began with church with all the girls and then to Cracker Barrel for breakfast. Then a drive to the beach to check on the progress of our beach house. Slow going right now as they put all the beadboard and plankboard on the walls.
Praying that you all had a wonderful Easter!
Update on Annabel and what she is up to...She is going to school most days and back to her PT/speech also. She has two loose teeth right at the top in the very front. I can't begin to imagine how this will change her looks. Even though Annabel does smile it is much harder to get them. She seems to like to put her finger in her mouth or always have her pacifier.
She has been on Bactrim for her UTI that she just finished. Also she should finish her vancomycin this week for her c-diff. We are praying we can stay free of these two infections for a little while. It has been since January that she has had a line infection (woohoo!)
She has some issues going on with her gut! She has been on total gut rest for at least a month now. It isn't looking like we are close to begin feeding again anytime soon. Usually when Annabel is just on her TPN/Lipids she doesn't really retch/gag but not this time. We have been doing testing on her belly again for the last 3 weeks and we will be at TCH for results this Tuesday with GI. One of the best things is that Annabel's weight is down. She was 38 lbs. plus a month ago and due to some tweaking of her TPN/less Lipids she is down to 34lbs. This makes such a difference in her comfort level. She doesn't seem to hurt all over with the additional weight or the added oxygen. Her legs and arms are skinny but the usually were and just her core was very thick.  We trained another new nurse last week for the nights and she will begin this week. Tomorrow we begin training another new nurse for the day shift to help out with Debbie. She has been doing most all of the day shift and we are thankful to her. Hope everyone has a great week.     


Saturday, April 7, 2012

Counting Our Blessings

With three of our six kids needing to leave after church in the morning to get back to their schools it was decided that we would celebrate Easter today. It was an amazingly beautiful day. The menu was boiled crawfish and for those of us who do not partake in these creatures there were shrimp. There was plenty of other things to fill your plate with and yummy desserts. I realize that there will be a day when we are not all able to be together but today we were and I am grateful. Wishing all an early Blessed Easter.

Thursday, April 5, 2012

Changes are hard...






We have been so blessed with 3 great nurses. In the last month Rebekah has been put on bed rest due to her pregnancy. We still hold out hope that when and if she returns to work it will be with Annabel. Donna who happens to be Rebekah's sister and our night nurse will be leaving after tonight to join her husband who is finishing basic training next week. So the picture tonight is of her and Donna spending some happy times together before going to bed. We thank Donna for being the sweet nurse that she is, she is faithful and can be counted on to pick up extra shifts and be flexible. It is our prayer that if and when she returns to our area we would be lucky enough to have her in our home again. Thanks Donna and we love you!  You will be missed more than you will know...

Sunday, March 18, 2012

Trisomy 18 Awareness Day!



Annabel's life has brought so much to our world. She has taught and continues to teach our family so much. From the smallest of things to the biggest. Even though many days her illnesses cause me much stress, it is also on many more days that her touch, her sweet smile and the soft sounds that she make cause me to have the most peaceful of days.

It is a fact that most of our medical profession doesn't see much purpose in their lives (trisomy 18). They strongly encourage the parents to abort and  I am so thankful that Annabel wasn't met by this same fate. God truly has a plan for each one of us on this earth, long before we even make it here! 

  Below are  comments that three of my older children left on their facebook page.  I do know that when and if Annabel is called home we will all miss her and be incredibly sad but I hope we all remember how blessed we have been to have been able to share her precious journey with her.

Tara's comments: 
Today could not be a better day! My favorite little girl in the world turns 7 and I get to celebrate this blessed day with her and my family. Happy Birthday Annabel!!!
 
Tyler's comments: 
Spending the day at the beach with the Birthday girl. Annabel Grace Shelander 7 years of miracles. Being born on St. Patrick's day she may have had some Luck of the Irish rub off on her
Carly's comments:  Happy 7th Birthday to the strongest most amazing little girl I know my baby sis Annabel Grace!!!

Friday, March 16, 2012

Day Before Birthday Party Activities....

 Annabel's friends in first grade came to her class to singing happy birthday and to share in her special day. They all made their own special cards with messages to her. I guess when you have children that are in regular classes they can experience friends writing them note, or saying "you are my best friend, etc. Tears came to my eyes when each one read their own cards and explained their drawings. It warms my heart so much to know that each and every day Annabel's story and life touch so many of all ages... If she could talk I know she would want to thank each one of her friends for sharing in her birthday celebration! 
 Her birthday cards from Ms. Newton's class and Mrs. Eaves....
 Annabel made a Leprechaun
 Annabel leading the group in clapping!
I love this picture of her sitting amongst her friends....
 
More of the kids with their cards...
The class singing Happy Birthday to her...can you see the joy in her face???
Blowing her candles out...

 Annabel's cake
 One day shy of 7 years old...
 How she has missed her Rebekah!!! (Hint: look at Rebekah tummy in following picture)
Look closely and you will see her baby bump! She was having some problems and won't be able to lift Annabel for awhile. Annabel is trying to accommodate since Annabel has lost almost 4 pounds in the last 2 weeks. We all want her to give birth to a healthy baby but we all sure miss her! We thank her for coming to school to spend Annabel's birthday with her.

I will be adding more pictures of Annabel's kindergarten class, Ms. Eaves is the teacher. Annabel goes to their class two mornings a week and shares in circle time, music and socialization. We are so happy that she is allowed to take part in the regular classes and that all the kids loves her and are so sweet to her.

Also to Ms. Ann, Ms. Lisa and Ms. Alice who are the teachers in Annabel own class. They love her and take such good care of her. To say they accommodate her every need is an understatement. It would break my heart to think Annabel could not experience all that she does each and every day. We love all of you for loving Annabel and never ceasing to pray for her.