By God's Grace

A year has come and gone....

2015-08-04T16:52:00.001-05:00

Well after my last post in July Annabel continued to have GI bleed out of her ostomy until November, 2015. Her intestines continue to deteriorate and as recommended Annabel was placed on hospice. In Nov/Dec I decided to network locally to see about receiving breastmilk from local donors. We were overwhelmed with donations from the sweetest moms.
The bleeding stopped but Annabel continued experiencing the pain that had plagued her most of the year. She was life flighted to Texas Childrens in December the sickest she had ever been. She was placed in surgery for a very severe obstruction. They rebuilt her ostomy and placed in recovery. I truly believe Dr. M was an angel sent to us. Her surgeon since she was a baby had decided without her stomach working that he would not longer operate on her. I will be forever grateful for Dr. M.
We had her central line removed in March and Annabel was tolerating her milk via g-button and was actually receiving some pureed food in her mouth. We were beginning to struggle to keep her electrolytes up just on breastmilk and began giving 1/2 elecare and 1/2 breastmilk. Today Annabel is doing the best she has in the last 5 years eating.
With all of the progress though her seizures became harded to manage. She is on two meds every day with rescue meds used fairly often. Each time we up one of her meds she has about 2 week to 1 month almost seizure free. But then they start again. Last week, while Annabel was at school with her nurse she stopped breathing, non responsive and 911 was called. I met them at the hospital and it was decided that Annabel had a seizure. This is the 5 episode of Annabel not breathing in the last year. My prayer is that these seizure will respond to medication or we will be able to anticipate when they will be coming on so we can help her sooner.
This is a very brief update and so sorry for the errors. Each time I pass my computer I think about updating but trying to put episode in order overwhelms me.

Recent pictures...

2014-07-28T14:49:00.001-05:00

The photos from above are from this past week. Annabel was bleeding again out of ostomy even though not as bad as the beginning of the month. So we went in again for a scope and also a scan to see the blood flow that was getting to her bowel. Some of the words describing her bowel have been friable, necrotic,and ischemic???

These two photos are from home where she is most comfortable in her bean bag. Even though for her scoliosis, kyphosis she needs to be sitting in her special Rifton chair. These days Annabel is very uncomfortable sitting up. Also Annabel is holding her nephew Flynn. This is Derek and Linzy's first baby and our First Grandchild. She is very gentle with him.

This was the first of July when she had the major GI bleed and was so ill. Annabel tolerates very little in her tummy so they place her on NG suction in the hospital. It hurts this momma so bad when she retches so many time a day. They have converted most all of her meds to IV as of late. It is easier on her but I still get so nervous having to access her lines so often. After this hospital stay Annabel came home on 4 IV antibiotics, which meant accessing the lines 12 time daily for antibiotics alone, the 4 times for benadryl, 2 times for zofran, 1 for protonic and then up to 6 times daily for pain.

Here is Annabel enjoying some therapy time. When she is feeling well, we try to sit her up and play with her balls. She loves to throw and will catch over and over. How it warms my heart to see her so happy and feeling better.

Not such a great day for Annabel. We love spending time at the beach and in the past love to swing and rock on the porch. It now makes her sick so we just sit out and enjoy there breeze.

This is Annabel on one of her good days with her therapist Meg. She sure loves Meg... On a great day we can get Annabel to bear weight.

These two photos above are our Grandbaby Flynn David. How we adore our first grandchild and Linzy and Derek are more than generous with allowing us grandparent visit. It pays to live right around the corner. he is really beginning to smile and he is a very good baby!

We need answers and a plan..

2014-07-01T12:42:00.001-05:00

Annabel is inpatient in Houston. She has had ongoing pain and vomiting. She has had small amount of bleeding out her button when we vent her. But Sunday she spiked a fever at the beach and began vomiting and was in pain. We left right away for our home hospital where she began putting large amounts of blood out her ostomy. That is what led us to be transferred to Houston. Fever improved, they placed a ng tube into her stomach and this helped with her vomiting.
She does have an infection in her blood, the scoped her and her bowels are described as severe and friable. The next few days will tell us more as to what is going on with biopsies. Thank you that you keep reading even though I can'tseem to sit down and write out my words.

Where to start.....

2014-06-05T22:24:00.000-05:00

Please forgive me for being away. So many have stood by our side for so long with your constant thoughts and prayers. So many times when I updated it was through Facebook, mainly because it was quicker and easier. I love to post pictures and I was having so much trouble on my new apple computer and just became frustrated.
Tonight I couldn't get a signal on my computer where it is easier to type so this update will be brief.
In October Annabel had her total colon removed. After this she had 5 very successful weeks of eating through her g-tube. She continued to live life free of a central line until this past Dec '13 when her stomach totally stopped working. The first of January she had her central line placed and continues to struggle with eletrolyte issues, obstruction issue! vomiting and dumping. She is suffering ongoing liver damage. She is having to be placed on almost all IV medications due to intolerance of the smallest amounts going into her g-tube.
If any of you still follow her blog and are also on Facebook, please message me and you can see more pictures of Annabel.
We are having some tough conversation concerning Annabel's plan of care, basically to keep Annabel as comfortable as possible. This isn't anything definitive yet but I will try to recap the last several months and get my daughter to help me post updated pictures of sweet Bella!

Surgery done and discharged...

2013-07-15T22:14:00.000-05:00

All went very well with Annabel's surgery today. She had a supra pubic catheter placed, dilation and a cystoscope done.
She came through the anesthesia as well as every with only a little nausea. We were discharged quickly and home in 2 hours.

But I am thanking God for my wonderful night nurse tonight. She has been in so much pain since about 5:00 p.m. She has pain spell with heart rates staying over 200 for about 30 minutes. She is resting in between. I am fairly sure it is hurting her to urinate so therefore she is trying so hard not to. We can't use the catheter yet, so we are having to let her go on her own.She was dilated as big as possible and it was bloody and he want to urine to wash all the blood out, so we much just endure the pain for hopefully on about 12 more hours.

This picture is here to the right of Tara (Annabel's sister) and Annabel watching cartoon prior to going into surgery. I am so thankful that Tara has moved back home, only one more semester of Law School! We had to leave this morning at 4 a.m. and it was nice to have Tara drive us and enjoy our talks.
She loves her sister and her sister loves her!

I am grateful for answered prayers that her surgery was uneventful and we were discharged the same day.
I am also grateful and thankful to Tara for the help and being with us today.

Best made summer plans...

2013-07-10T21:28:00.000-05:00

I am sorry but my pictures went crazy and all ended up at the bottom. I tried to move them into place and they just won't go.. So below are the pictures that went with the text...

We had the best of plans for Annabel to really enjoy here summer for the first time in years. This meaning she was free of any central lines.

We rescheduled all routine doctors appointments until the end of August and were going to spend most of our days at the beach. Just spending lazy days, living a much slower pace.

So here is Annabel spending time in her little pool up on the middle deck at the beach house. We fill in the morning so by afternoon the water is just right.

If the beach water is smooth and mostly clear we do go to the edge of the water and let her be rocked by the tiny waves. Mostly we opt for the clean water on the deck.

As we do have a pool at home she does spend sometime in the pool when we are home.

This is Annabel having lunch with her much loved teacher, Ms. Ann...who we will miss so much due to her retiring.

As you can tell she has eyes only for her Ms. Ann.

So for the update on Annabel's health, she will be having her supra-pubic cath placed on this Monday. The surgery isn't a biggie but always some concern when we have to put her to sleep. If all goes well, we should be returning home that evening

The neurologist (movement disorder specialist) wanted her to have a PH probe to rule out reflux. We have done this several years ago and found nothing of reflux. She just wants to make sure these movement have nothing to do with reflux. So they will sedate her on the 22nd of July and place the probe. We will stay in Houston for the evening and then be there in the morning to have removed.

Our newest issue is that Annabel has begun to not tolerate her feeds very much. We are still giving her most of the feeds but basically forcing her to take them (g-tube). She is uncomfortable and begins letting you know at the beginning of the feeds. Also her stomach is becoming very distended and hard. She is having very few BM's even though her stool is watery. Tonight she just had a KUB and it shows she is so filled with air. All her bowel loops, like they were prior to her surgery this past July. This new upsets me greatly, because if Annabel doesn't eat, her only option is central line and we don't even want to go there...

Enjoying the breeze on the deck!

We had to seen an ENT today after the finding of her sleep study. Back in 2009 she was said to have severe obstructed and central sleep apnea. She was placed on c-pap which work for a couple months then needed more oxygen and there another sleep study that led to her being on bi-pap. That was a no-go. Her tummy filled with so much more air and there for hindered her feeds. Annabel has been on oxygen since then but the sleep study again was severe and they want her on bi-pap. So at the ENT they said her tonsils were so tiny (like back in 2009) and then xrays her adenoids and they said they are really big and only leaves her a very tiny airway... So she will have her adenoids also out probably August. He also went on to share about reducing her tongue by killing some of the tissue in the back, then decided the back part of her tongue was not that big it was the front of her tongue. We know this falls back when she sleeps and blocks her airway also. He mentioned about when he scoped her that if he found things

wrong with her airway he would have to perform a tracheotomy...

WHAT the heck???? We agreed he could do the adenoids because

they are obviously an issue but likely not the only issue.

There would have to be the most significant findings that would

convince me that Annabel would be better off dramatically

with a trach.

This photo below is the morning Annabel woke

with Hand, Foot and Mouth Disease(Virus). She was awake all night due to be so uncomfortable.

In the morning she was covered on her inside palms and wrist, bottom, top of feet and ankles,

and her lips were so red and puffy. She did end up with the sores in her mouth. All in all, I don't think it was as bad as it could have been. She

basically lived on Benadryl for the first 3 days. She still has the rash but the intense itching is seeming to slow down.

Prayer request are for her to do well with the multiple times she will be going under for sedation...

Also that her stomach will calm down and that she will be able to receive all her nutrition from her g-button.

Last one is that the supra-pubic catheter procedure will give Annabel relief from the UTI's and that the more invasive surgery, vesicostomy will not need to be performed.

New Medical Information

2013-06-23T23:16:00.000-05:00

This is what is going on with Annabel medically. The UTI's are continuing with maybe only 24-48 hours after her antibiotic course is complete before it reoccurs. We are now working with Infectious Disease at Texas Children's Hospital. We have been with them for about 3 months now and in the beginning they seemed to have much hope that there were antibiotics out there for Annabel that could fight this bacteria that comes back so quickly. Two weeks ago we went in for an appointment and we knew Annabel was infected again just two days after finishing her recent round of antibiotics. So the doctor wanted a urine culture and some labs. She also placed her on Keflex until her surgery on July 15th and then one month after. This Tuesday I received a call from her doctor who had given us hope concerning her antibiotic use. In my heart I knew the Keflex wasn't getting the infection because Annabel was uncomfortable during the night and wasn't sleeping well. She began to tell me how she was going to have to change the Keflex and how she was not even sure what would work anymore.
She said that with every antibiotic given the bug just get stronger and that her fears are that soon we won't have anything to fight this bug. We know she is colonized and will have to do everything to keep her bladder drained. The upcoming procedure is the supra-pubic catheter. If this doesn't work, which I have been told there is only like a 10-15% chance, then the surgery I have put off for years will have to be done. This is called the vesicostomy. I have dreaded this procedure because Annabel will have a wet diapers all the time. She doesn't like being wet, never has. Also, from comments from other moms is that she could also wet her care givers. The last surgery being explored is to remove the bladder completely. There isn't much finding on pediatric concerning this surgery but there is in adults. It will be a very difficult surgery as we have been told. We feel blessed to have this new Infectious Disease doctor who is young and energetic and doesn't mind seeking help from all over the country.

This past Thursday Annabel saw a doctor specializing in movement disorders. Annabel has been having seizure like activity for a while now. They have been on the increase in the last month and we had seen her current neurologist for these. Even though her doctor didn't see them in her office, we had supplied video. So a few weeks ago they ordered her an EEG while we were in her office. She was hooked up for about 2 hours and we believe what we thought to be seizure like activity did occur on at least one occasion. So the EEG was read and was report that Annabel was not having seizures. We were so relieved. I felt that this was due to some sort of pain in her abdomen or maybe her constant UTI's. They also seem to increase after she received her botox treatment for her teeth grinding. After sending videos to the doctor who had administered the botox and were told they didn't believe this to be a reaction to botox. This is how we came to meet this new movement disorder doctor. So Thursday after showing her the video so wasn't really sure if it could be something called Sandefur's syndrome (basically reflux that has really damage your esophagus ) or that maybe it was truly seizure that weren't picked up on the EEG due to them being deep brain seizures. If anyone know me I won't medicate Annabel just because someone thinks something and I won't leave her on meds unless there is conclusive evidence that the meds are working. About that time Annabel's nurse told the doctor to look at Annabel and she was beginning what we call her seizure like activity and followed up with about 10 more. They doctor called these clusters and changed her thinking that it was Sandefurs syndrome. She is almost sure these are seizures after seeing eye deviations, muscle tone changes, etc. As much as I was struggling with the fact that these could be seizures it came to my mind that maybe this was a God thing. God knows I would have to have black/white evidence to medicate Annabel with seizure meds.
The doctor began to review her EEG and said after seeing all the abnormal brain activity and the mis-firing that was going on in her brain she would be shocked if these weren't seizures. I told her how we felt sure she had one of these while hooked up a couple weeks earlier, and she told her she has had many patients that are truly having seizure but they can't catch them or that they are just too deep.
So I asked her what she would do if this was her daughter and she said she would begin meds right away. We talked about some of the side-effects and decided to begin on now that was a very small dose and after a week up it. It will still be a small dose. Then another seizure med that we will use when they are coming with so many a day. She is sleeping much of the day and this is what I dreaded but I have been told her body is having to get use to them.

Other than this Annabel has attended two vacation Bible Schools in the past two weeks. One was at our home church another was a Baptist church here in town. She had such a great time and her nurse was able to attend with her. I am so thankful for the new friends Annabel met while attending.

This is Annabel with some friends who came to visit.

She continues on with her speech, OT and her PT here in our home. Annabel is staying very busy and we will be spending some of our summer at the beach. We continue to be thankful for our same sweet nurses. Please pray for Annabel that her surgery will go well and that she can be on the smallest doses of these meds for seizures. We adore her sweet personality and I understand many of these drug can have an effect on the personality.

I am hoping to post very soon about Annabel's Make-A-Wish gift that maybe arriving this week. I think I am figuring out this computer finally.

Annabel waiting for her craft activity at VBS

Playing on her mat prior to therapy

Annabel on beach time....

A toothless Annabel

Isaiah and Rebekah came to visit with Annabel

Annabel's field trip...

2013-05-10T14:07:00.001-05:00

This is Annabel's new nurse, Rachel. We are so excited to have found her. She will be our PRN nurse as she will still be attending nursing school. We have waited, sometimes not so patiently, but now feel the wait was worth it. We still have Rebekah, our very first nurse also but she is only working one day a week. Since Motherhood, she loves staying home with her little one and we understand even though we miss her. She normally come on Saturday.

The rest of the photos are from Annabel's field day. This is the bowling ball push. She truly looks like she is enjoying herself. I haven't heard how she finished in this activity.

Earlier today she was entered into the 25 yard dash where she took 2nd place and the 50 yard dash where she finished 1st. This was a wheelchair push with her sweet nurse pushing her. Go team Annabel and Rachel.

We now have a plan...

2013-05-09T13:14:00.000-05:00

Vesicostomy vs. Supra Pubic Catheter...that was the debate at yesterdays appointment. Our urologist is a great doctor but is sometimes hard to get him to respond concerning Annabel. We have been very frustrated in the past with Annabel's UTI's but when she had the central line they seemed easier to manage with antibiotic IV. She has been infected since December with E-coli and they say she is colonized. I have just begun to understand that she will not get rid of this bacteria ever. They explained that once you are colonized you will always be. UGH!!! So several years ago the urologist wanted to do a vesicostomy. This is a procedure done where a little hole is place in the lower part of abdomen. There urine will leak out constantly so that her bladder is always empty. This also means that Annabel will be constantly wet. I do understand the thinking that she must always be empty but I can deal with the fact that she will constantly be wet. So there were two other procedures that I had researched for information. One was called a mitranoff (sp) and the other was a supra pubic catheter. The Mitranoff is a much more invasive surgery and it would basically give her a hole high up on her belly with a cover on it like her g-button. Then we would still have to insert catheter to drain her bladder during the day. The supra pubic catheter seems to be the easiest option and seems that maybe we can empty her more often without her constantly draining and her staying wet all the time. This will have a tube coming out of the lower part of the abdomen with a clamp on it. This way we can leave her open to drain while sleep or at home. But when she is at school we can clamp and empty her every hour. Also, she has become very aware when a new nurse come to learn to cath her and she doesn't want anyone there except myself or my daughter. She does let our main nurses do this but someone new is very hard. I am proud of her for knowing that this is a new person and that she knows she can't trust them yet.
Anyway, her urologist strongly suggested the vesicostomy. I knew I would not be able to decide this procedure until I see if this supra pubic works first.
We have tried so many antibiotics that Annabel is becoming resistant to many. We also have to be very careful with her tummy and don't want the antibiotics to tear up her belly so therefore she wouldn't be able to eat in her g-tube. We have also don't prophylactic doses of antibiotic and she continued to have breakthrough infections. We have done antibiotic washes to her bladder which she became resistant to these antibiotics. She has been dilated twice to help her bladder drain, which has not helped. According to the doctor we have exhausted all possibilities. I am thankful he listened to my request as to the option of the supra pubic catheter. I ultimately believe he is right about the vesicostomy but feel I need to do this other procedure first.
So sorry that was so long. Our last appointment was to be fitted for her mask for the bipap study she will have as soon as she doesn't have this respiratory infection any longer.
Annabel continues to go to school most days. She also continues to have her in home therapy. We have decided that she will not attend summer school but I am signing her up for vacation bible school. We do hope to spend much of our summer at the beach.

Sweet picture...

2013-05-03T13:07:00.000-05:00

I have tried to update but having so much trouble. Annabel continues to be free of a central line. She continue to rake in the minimal amount of feeds through her g-tube. She continues to experience since December one UTI after another. It is quite frustrating that we are not able to get her free of this bacteria. It is E-coli and they are sure she is colonized. We have consulted with Infectious Disease to see if a plan can be made to help her out.

Annabel also had a sleep study which again confirms severe sleep apnea. She will go in for anothe
sleep study soon to see what can be done with a bi-pap.
We are looking forward to summer and spending time in the pool and also going to the beach!
I am truly trying to update her blog more often.

Happy 8th Birthday to Annabel...

2013-03-26T21:07:00.000-05:00

I am so sorry for taking so long to post! As you can tell from the pictures Annabel had a birthday week! We celebrated whenever we could get family together and this of course with her class. She was not a smiley as she normally is and that could be due to her taking an antibiotic. They always play tricks on her tummy.

Now that I have a working computer I hope to be posting more and keeping up with her activities. I am still trying to learn this one but wanted to get her party pictures up.

It is so amazing that we have had 8 beautiful years with our little Angel. Our continued prayers is that doctors will see that Trisomy 18 is not incompatible with life.

HAPPY BIRTHDAY TO SWEET, PRECIOUS ANNABEL

2013-03-17T10:26:00.000-05:00

Hoping to post a picture this week, with more parties!

One more day...

2013-03-16T10:58:00.000-05:00

I haven't posted in so long. I have had computer issues and I don't like typing on IPad. I am going to get my computer this week (hopefully). I want to share pictures of her and I also for some reason can't do this on IPad .
Tomorrow Annabel will turn 8 yrs olds! I will update what has gone on with her health the last few months then. Thank you to all who email with concerns.
Happy happy Birthday to our special sweet girl!

Where does time go?

2013-01-17T12:23:00.000-06:00

All has been going fairly well with Annabel. He stomach is still allowing her to take in formula and maintain her weight. The life without a central line has so much less stress. Now when she becomes ill we don't panic or run to the hospital. When one thing works for Annabel then one other thing acts up. Anyone who has followed the blog or a few years know she can be plagued with UTI's. that is where we have been last couple months. Her biggest issue is that the antibiotics aren't clearing her up. If we had the dreaded central or PICC line we could run I'VE antibiotic and fight the bug much better. But I don't want to be negative because I am so happy she is free without all the extra attachments.
Our Thanksgiving went well and we stayed home. Annabel has had a couple respiratory infection so it was easier having the family here.
Around the middle of December the twins came home for their break as well as their sister from her school break. I think Annabel likes all the activity with everyone back home. The boys both drop in fairly often.

Trick or Treat....

2012-11-01T22:01:00.001-05:00

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!

You are in our prayers...

2012-10-30T19:32:00.001-05:00

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.

We will miss you Sarah....

2012-10-14T22:38:00.001-05:00

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

Annabel Grace meets Annabel Leigh

2012-10-08T20:16:00.002-05:00

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 ....

NO quite sure what is going on....

2012-09-24T21:58:00.001-05:00

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.

Needing to be Chloe like....

2012-09-12T13:13:00.000-05:00

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!

Small bowel surgery....

2012-09-05T10:31:00.000-05:00

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!

Central line removed...

2012-09-04T23:19:00.002-05:00

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!

I failed to post...

2012-08-29T22:01:00.000-05:00

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!

Yeast is growing in line....

2012-08-08T05:30:00.001-05:00

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.

She just needs a break...

2012-08-07T00:20:00.001-05:00

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!