Saturday, December 25, 2010

Wishing you a Merry Christmas...

Aunt Lera and Annabel
Shauna (my cousin) and Annabel
Tara and Annabel
Annabel opening her tickle me elmo...
My new bike that Santa brought me...
Oh how I love my sissy and brothers...


Here is wishing a very Merry Christmas, Happy Holidays and a Glorious New Year to everyone. For another year you have continued to hold me up and sustain me with your prayers. Please don't stop! Love, Annabel and her mommy....

Thursday, December 16, 2010

A day out...





Annabel was dress today for a fun day out. She had her best day yet and for this we are grateful. She still gets tired but seems to string more good spells together than the bad spells. We are cancelling any appointments at this time and going to stay in and enjoy our time with family. I added some pictures from her wonderful day yesterday. Praying for everyone during this Merry Christmas season and hoping all is well in your home.

Tuesday, December 14, 2010

Thank you, Katie...


Today is a better day for Annabel. So far today she hasn't been doing the drooling with the eyes rolled back and the moaning. She also slept all night and that is what we both needed. For this we are so grateful.
We went to neurology yesterday in Houston. She isn't sure what Annabel is doing over the last couple months is seizures but she want to check it out. The nurses have some concerns about some of her movements and so we needed to check it out. They want us to come back Friday but I think we are going to postpone and wait until after the holidays. The thought of driving to Houston for a day drains me. Yes, I realize it isn't about me, but I have so much to do. I really think Annabel needs a rest and just to hang out and enjoy her visitors. The twins should be returning home tomorrow and we are looking forward to more activity in the home. Of course, Derek, Tara and Tyler continue to come by daily and play with her.
She seems to be coming down with something respiratory, (another reason to hang low), so we are going see Dr. B today for this.
All in all, I think we are recovering. They remind me because we are home doesn't mean she is well. That really she should be in the hospital for the 21 days of antibiotic and healing. We are blessed with dedicated nursing that allows us to return home and with understanding doctors that allow this to happen.
As for Katie, a young girl who lives near us made her this precious, soft blanket. She follows Annabel and I was so touched when she ask her mom to give this to us last night. Thank you Katie, and I know it will keep Annabel cozy and warm. You have a beautiful heart young lady.
Again, thank you for continued prays for Annabel's recovery.

Friday, December 10, 2010

Returning home...

It always feels so good. We came home yesterday but I didn't stop to blog. Thank you to everyone who lifted and carried my girl in prayers. We felt it each day and are grateful.
She is home, weak, tired and doing things she didn't go into the hospital with. The TPN is definelty showing effects on her liver. Somethings are really out of wack that haven't been before. With this horrible antibiotic and the TPN/Lipids most days she was losing two IV sites. She is bruised up and poked and prodded. But we are home.
We considered having a run to the ER tonight. The nurse nor I liked how she looked or sounded. Since Monday she has been keeping her mouth opened, drooling heavily,constantly moving her tongue in her mouth, making a quiet constant sound, all the while rolling her eye back and keeping them there. It looks very strange. I am trying to see if it the use of much Benadryl due to her itching while in the hospital, or possible side effect of the neurontin, maybe mucomyst. She looks pale/yellowish skin, white of eyes have yellowish tint and she is so weak. Tonight she began crying in obvious pain (unlike Annabel) and we didn't know what to do. Anyway, will keep you posted and praying to stay home through this holiday season.

Tuesday, December 7, 2010

Out of TCH...admitted St. Elizabeth

Her surgery was hard. Surgeon said very hard placement with much blood loss. Had to stay there overnight with discharge back in Beaumont to our favorite hospital. Will update little later. Thanks for continued prayers.

Monday, December 6, 2010

Surgery at two...

Just quick update before I pack my computer up...she is scheduled for two o'clock for central line. If all goes as expected we are being released and will be admitted to St. Elizabeth's tonight. It is amazing even though I am not going home, I totally feel like I am! Also, Dr. B is in the hospital today and tomorrow. We probably won't be in too long and then go home on antibiotic with our home health nursing.
She had a good night and I am watching her laying in the bed and clap her hands. I think she feels my joy in being released from here.

Sunday, December 5, 2010

Good Day...




Today was the best day yet. She was happy and comfortable most of the day. She still has the itching going on and the thought is that it is the yeast still in her body or the liver enzymes/bile acids causing this.
The good news is we have a culture that was taken on Dec.1st and by tomorrow hopefully will still show no growth. That means we can have our central line placed. It is scheduled for 2 p.m. The plan is that if they can say she is stable with no growth in her blood and that the central line is place then we will be transported home. That is huge and Dr. B is waiting to accept us at our home hospital.
I am trying to load pictures from today. Most every day here at TCH during the Christmas season there is something Christmas going on. Couple days ago the little tree with the pink ornaments was given to us. Yesterday the Sesame Street Puppet show was given in our room and today this group came and passed out Christmas gifts. No not just one or two, but like six or more gifts. This does help bright a day when you don't have much else to do.
Jillian and her mom, Monica, also came to visit from Beaumont. She brought Annabel a best friends necklance and she is wear one also. We enjoyed our day with my girls and friends.
We are so thankful that Annabel seems to have fared well with this infection. As quick as she gets sick, she can recover so quickly. I really don't want to have this central line place due to high risk of infection again, but at this point we have no choice. This hospital stay has been the worst ever. I hate to complain but never had I felt that I had to fight for everything, big and small at this hospital. When meeting with the resident tonight she said they consider my hospital stay as sloppy. She admitted many things happening and that the hospital is in transition (new one being built in West Houston). I have noticed such a difference since last summer when we were here.
Again, thank you for your prayers and your comments.

Saturday, December 4, 2010

Family..Best Medicine Ever








Tonight as I sit in Annabel's hospital room with color twinkling lights, listening to Christmas music, smelling my new Christmas Sentsy Candle I am so thankful for my family...
Today was a day that I didn't sit and dwell on medical issue, fighting for everything Annabel needs, or thinking about tomorrows and the what ifs....
Today was a day spent with family. It was also a better day for Annabel. She thrives off the attention and interaction with her brothers and sisters. Today Tara and Colette stayed with her while Carly and I ran to Target. Our goal was to bring so Christmas to this hospital room. We brought decorations to hang from the ceiling, Christmas clings to put on the glass in the room, twinkling colored light for Annabel to look at, a Christmas stocking for Annabel, a welcome mat for all who enter her room, Christmas CD's and Christmas DVD for Annabel to watch. We probably made too much noise today in her hospital room but we had so much fun. Tyler had his drill in Houston this weekend nearby and was able to come spend the day with Annabel also. Derek and Mel took in the Rice vs. Lamar basketball game and then came by to visit. Thursday was Tyler's birthday and since we were not home to celebrate we decided to go across the street from the hospital for dinner. Thank you to Tanya who drove over from her parents home to watch Annabel. It was so nice and just what I needed to be able to be with my family at this time. As we came back into the hospital lobby, a familiar face got up to approach Mel and I. We realize we had not seem him in many years and he had taught a few of our children when they were younger. He looked at our large family and he said are these all your children, I smile and replied yes they are! No mother could have been prouder...
When I began this journey with Annabel, we thought it would be so brief, days , weeks maybe a month or two! I brought her into our home willing to do this all on my own, meaning care for her. I didn't want them to become too close to her, didn't want things to disrupt their lives by me not being there for them, basically didn't want them to get hurt. None of us imagined her sweet life would have been so long! None of us thought we could have fallen so in love with someone so little. Annabel continues to have this amazing hold on all of us that make us come together even more. She is truly the glue that bind us together.
As we enter this Christmas season, I feel so thankful to everyone who continues to pray for Annabel. I truly think of everyone lifting her up to Jesus and praying for her. It is so comforting to know that when I am lazy, tired or just plain forget that all of you continue to do so..

Better day...

Annabel has had more good moments today and for that we are thankful. So many things are being talked about that my head keep spinning. Also the fact is that a teaching hospital so many doctors come in and out and make changes or have opinions and they just don't all agree.
Seems like the blood infection is staying status quo. We still don't have a culture that has been clean for five days. We have one that hasn't shown growth for two days but the need 72 hours with five clean cultures in a row. Her fever hover most days around 100.5. So I think the antibiotic is keeping it in check. They have taken her off the dangerous antibiotic and now she is on flucanazole (sp.) The plan is that she must have 5 clear cultures then 21 days of antibiotics. At this point we have surgery for her central line on Monday around 1 p.m. if culture wise she is clear. We are hoping to be transfer back to our home hospital and be under the care of Dr. B. If she feels it is possible maybe discharge with our nurses giving the IV antibiotics at home.
Some of the things that we didn't know when we came here were some very elevated levels of bile acids, GGTP, Bilirubin, other words like Bili Conjugated, Directs, etc. Also her electrolytes have been wacky and according to the doctor not in the way they expect. Until I can hear what they are say a few more time I am really confused. I have made notes and i am sure by Monday we will be meeting again. We had a meeting with the doctors last night and talk was about transplants, her not qualifying and what our plans were if these things progressed. Now, this is them talking and me still processing. We know her levels have been changing with the TPN/Lipids but they haven't ever been what they are now. I am praying that this infection just got her really hard and the antibiotic is hard on your body also. If I can I hope to post pictures tonight. The entire family came to Houston and we are having dinner across the street quickly while Tanya sits with Annabel.

Thursday, December 2, 2010

Annabel's Kindergarten Class...


I told Annabel to smile to her class in this picture and she did. She misses everyone and loves Regina Howell!
Hi Mrs. Eaves! I wanted to say thank you for writing to myself and Annabel. Please tell the class how much Annabel likes coming to visit the class and that she cannot wait to return. Also, please tell them how much we appreciate how sweet they are to her each time she visit. Thank you for following her blog and for all the prayers sent up on her behalf. Praying that your class will have a wonderful holiday season and Merry Christmas!





Thank you to all who visited me these last few days and many who have offered. Kenzie came by to see Annabel and came bearing gifts for Annabel and myself and we had a good visit.
Also last night Loma and Lanny came from Beaumont and also, Dr. Pam and Stacy. Thank you all for taking your time to come see her. Also for the offers for dinner and for bring me dinner!
To Michele who I failed to get a picture with who brought me 3 meals and many extra goodies.
Also to Nick who came to see Annabel and brought her a precious teddy bear. Thank you and didn't get a picture with you with Annabel.
All the visits lift my spirit and make Annabel smile. Also all the comments on the blog, facebook, email, text,and calls are priceless. What a wonderful praying world we live in and so many people all over the world that pray for her! I have a feeling tomorrow will be a good day for Bella!

P.S. The first 3 pictures are from yesterday when Annabel was having a good day. Today was tough as were the other days before. But we are so thankful for anyday especially when she smiles!

Success...


A very patience and caring man help Annabel this morning. It was very deep and painful for her but for now we have a vein. We aren't moving her as to not disrupt anything. The very nice man is going to come back around 1:00 an attempt another one in her other arm inside in case we lose this one again. They are wondering if between the tpn and this antibiotic that it is hard on her veins. They are choosing the antibiotic now which has to be given over 6 hours.
At this point she is back to how she was when admitted with not much response. I feel sure once this gets started again we will get to see that huge smile. Thank you for continued prayers.

No IV's ....no antibiotics tonight

Annabel did have a better day for a while, with visitors and smiles. We are thankful and I will post pictures tomorrow. The day ended not so good with much concern from the doctors. She lost one IV yesterday and three today that were so hard to get. No one in the hospital will try tonight. Tomorrow we are praying IR (Interventional Radiology) will get her in first thing for access. Until she is 5 days without yeast in the blood stream no type of central line can be placed.
I appreciate all the prayers but please continue til this yeast is out of her blood. I did get some great news from home that our doctors will take us back to our home hospital if Annabel becomes stable. With the holidays and the thought of 21 days of antibiotics that can only be administered in hospital it is nice to know we maybe could be closer to home. Also the 21 days can't begin until she is free of yeast in blood for 5 full days, then they begin counting.

Tuesday, November 30, 2010

Sleeping Beauty...


Sorry about the entry earlier but I was trying to do something from my phone and obviously I don't know how to work it.
Annabel had been doing fine. The holiday were great with all the family around. She began to get sick after going to be on Saturday night. She woke a few time with vomiting, fever and chills. I did try to pick her up and take her to the hosptial but each time she threw up more. So around 1 a.m. Sunday morning with her fever 102, I realized with the central line I needed to go to the ER. They did some testing and it was decided she had a positive strep test. They gave a round of IV antibiotic and then a prescription. I knew the ER had done a blood culture through her line but wasnt' worried because we haven't had an infection in our line ever. We were released and returned home at 7:30 a.m. She continued to sleep til around 4 p.m. and by 5:p.m. the hospital called and said she needed to return right away. It was easy to go there because that is where her pediatrician go and it is close to home.
She continue to sleep, have fever, vomiting and a culture that showed yeast in her line. We were still praying that the yeast wouldn't be found in the blood stream. Yesterday afternoon it was decided that her labs were headed in the wrong direction and that we needed to be transported to Houston for removal of this line.
We arrived at 10:00 p.m. last night and have become a human pin cushion. They did get a culture that showed yeast in the blood and schedule her for surgery to remove. She did as well as can be expected and then they took her for ultrasounds of her abdomen. I haven't even talked with a doctor yet about labs or other testing. Upon arriving here in Houston she was yellow (skin tones) and the white of her eyes are yellow. Her levels are crazy and hope that tomorrow they will tell us what all this means.
In surgery they got one IV which they needed two. With 3 antibiotics to be administered and tpn to be given, daily cultures to be draw we need more vein to access. I am hoping vascular access can come in tomorrow morning and find veins. at this time they cannot place another line until clearn blood cultures begin to return.
Thanks to all who continue to follow her journey.

surgery now...

Yeast in the Line...

Just want to say quickly that Annabel was admitted Sunday to our hospital at home which we love so much. Last night she was transferred to Texas Children. She has yeast growing in her line and we are waiting for her peripheral IV line culture to see if it is in the blood in her body. We are praying just in the line. They are beginning 3 new antibiotics since arriving last night. Prayers are welcomed for Annabel and also for her mommy who was a little testy on arrival last night. Many mistakes/oversights were made and I need to take a breath and have more patience.
The best part was that she was awake on the ambulance ride to Houston and we haven't seen much of those eyes since late Saturday night. The fever this morning seems lower overall and the vomiting has decreased.
They are saying the line will come out today, but have heard that before here and we sat for 2 days with no one agreeing to pull/or not pull the line.
Thank you to everyone already for your prayers over and especially to Dr. B who was there at the hospital to admit Annabel Sunday night and to Dr. Hubbell who was there most of the day yesterday making sure all went well for her.
We will update when we have some results.

Thursday, November 25, 2010

Thanksgving Wishes....


To everyone we wish a very Happy Thanksgiving! Hope your day is peaceful and relaxing...Gig 'em Aggies..

Friday, November 19, 2010

Universal Child...

This song was sent to me by Emily's mom, Sara. I listened to it and cried. Then yesterday morning I heard Annie Lennox sing on Good Morning America and she sang Universal Child and I cried again. Today I purchased the CD and yes the tears fell again.

With each line of this song I think of Annabel. It is my constant reminder that we are her shelter from the storm, from the pain and hurting. I don't have to do anything heroic, I just have to be here each day and keep her safe and warm. I can imagine how this song rings true for so many of us who experience this life for our children. So just sit back and listen to the beautiful words being sung...
The last two days have been great for Annabel. She is off the IV antibiotic and just to finish the dose we have to give her benadryl due to her itching and clawing at herself. She was drug up for several days and we just couldn't see this happy Annabel. I am so thankful for how good she has been feeling. Also, I began with a small amount of breast milk into her tummy. I know until I try giving her something in her tummy one last time I can't accept the fact that she is TPN/Lipid dependant. So for a week now we have been bolus 3 -4 feeds daily and doesn't seem to be experiencing any discomfort. We are watching for distention, bloating and nausea but she seem to be doing ok.


How many mountains must you face before you learn to climb.
I'm gonna give you what it takes, my universal child.

I'm gonna try to find a way to keep you safe from harm.
I'm gonna be a special place, a shelter from the storm.
And I can see you, your everywhere, your portrait fills the sky.
I'm gonna wrap my arms around you, my universal child.

And when I look into your eyes, so innocent and pure.
I see the shadow of the things that you've had to endure.
I see the tracks of every tear that ran ran down your face.
I see the hurt, I see the pain, I see the human race.
I can feel you, your everywhere, shining like the sun.
And I wished to God that kids like you could be like everyone.

How many tumbles must it take before you learn to fly.
I'm going to help you spread your wings, my universal child.

I can feel you everywhere shining like the sun.
And I wished to God that kids like you could be like everyone.
And I wished to God that kids like you could be like everyone.


Annabel loved wearing my reading glasses. It made us wonder if she saw more clearly with glasses.

Tuesday, November 16, 2010

Looking for Lissa???







Thank you to everyone who reads and comments on Annabel's blog. Sometimes if you aren't registered with Blogger.com when you sign your name I can't retrieved your information. So to all who comment on and off the blog your encouragement means so much to me. The prayers are priceless as you all know that is why Annabel is with us today. God hears and He answers prayers.



So Lissa Gressley commented yesterday on my stressed out post. Lissa if you read this you commented on the spiral tubing for the broviac line. If you can contact me again either on this blog or my email which is suzyque92@hotmail.com. I would love to find out more about the tubing and understand how you use it. This blog has been a huge source of encouragement but also medical advice and so many wonderful suggestions. So please if you read this I would love to hear from you.



So to anyone else out there who may have some advice I never mind reading and maybe implementing something that has been helpful in your life with your child.



I will post more pictures from our day but she is pretty drugged from Benadryl. Annabel has been itching so much and clawing at her central line. She usually never plays with her button, lines or really anything. So we are assuming maybe the Gentamycin is giving her some sort of reaction so thus the drugged look. But with the help of our nurse we did get a small smile...enjoy!

Monday, November 15, 2010

Feeling the stress...

I couldn't think of a title for this post so I just thought of how I have been feeling. You may want to choose not to read as this will probably be more whining. For anyone who has read the previous post since the end of May, I have struggled with this Picc line/Central line. So this post is just more about that same subject.


The reality of Annabel's PICC line was that it was in right at six months. The skin was like raw flesh, very oozy and the stitches were very loose. But about a month ago as I was putting her to bed after rocking her to sleep, I pulled the line. It cause the line to move just a bit and the stitches as loose as they could be without being ripped. I felt horrible to know I cause her pain and that ultimately more irritation on the skin. We knew the line was already very short and had flipped up out of the place where it was first placed. So of course, I was stressed and found myself not wanting to hold her or play with her as much. My heart did but I didn't trust myself to not hurt her again. So soon after this it was decided by the surgeon that the line had been in long enough and she was going to be TPN dependant as much as they could tell. So she was scheduled for a central line placement.


This was to happen on this past Monday, Nov. 8th. I felt some relief knowing that this was going to be a more permanent type of line ( I perceived as harder to pull out or cause to move) and that we would not have to unhook the line each time she changed clothing. Because the central line is ran into her chest it is ran inside her clothing. So her surgery was very uneventful and she did very well in recovery. She had more nausea but as far as breathing she did so well. We were released and came home. That evening we received a call saying that she needed to be place on IV antibiotics and this could be done at home. Yes, no hospital stay, relief! Thank you, Dr. B!


So Tuesday was spent at home recovering. Tuesday evening she received her IV antibiotic (vancamycin). Soon after the nurse told me she was having a reaction and she did appear very uncomfortable. I was told to look for red-man syndrome and other side effects. Our nurse didn't believe this reaction to be red-man's syndrome so after calling the doctor we discontinued this and gave her Benadryl.


On Wednesday she looked well enough to go to school. I have to admit I was already struggling with an overwhelming feeling of stress. I knew we had to find an antibiotic that we could give and I didn't want to be admitted. At 11:45 I received a call from Annabel's teacher saying could I please come right away to school that Annabel's central line had broke. My perception was that it had been pull, the only way I knew it could break. So I raced to school and after calling the doctor was told to go to nearest ER. We did and were told to go to Houston. I had already called while we were in the ER and was told to get to Houston so they could pull the line and that she need to be connected as soon as we arrived. Debbie, our nurse who was off, offered to ride with me to watch Annabel while I drove. After arriving at the ER in Houston they began to talk of repair and not pulling the line (which required surgery and sedation). After a couple hours the tech who repairs/bandages they type lines came in and assessed that it could be repaired. So by 7:00p.m. her line was repair and after 4 hours we could begin feedings in the line. We were told to wait and attending would come in and approve our discharge. Soon after this a young surgeon came in, who we thought was the attending to release us, and said we are pulling the line and that she would go to surgery by mid-night and they would be placing an IV. It was almost funny as my nurse informed him the line was repaired and we were waiting discharge. He said no the line is contaminated and it must be pulled tonight. So thinking he was right we settled in for a long night and an admission. They IV teams came 2 by 2! They poked and prodded and dug and after 3 sets of these teams came there was finally a vein found but it was very moody and she had to keep her arm just right. Can you hear the stress in my writing. I wasn't even convinced the surgery needed to take place since some thought the repair was successful. Closer to mid-night we were told that she would be admitted upstairs because they couldn't work her in to surgery schedule. After loosing 2 rooms and it being 2:00 a.m. I was a little unhappy and voice my dismay. They found us a room in observation and by 2:30 Bella was sleeping soundly and we were still being told she would have surgery the following day. By this time we had seen 3 different doctors and the feeling was that the line was contaminated. At 6:00 a.m. a very young surgeon came in and said hopefully,we would go to surgery today. Ok, I was sleep deprived, very stressed and I looked at him and said "Oh no, you just used the wrong word! We are not hoping to go, we are either going or not going, so talk with someone who knows and tell me!" Around 9:00 a.m. a fellow came in who was with the same surgery group and after looking and hearing how the line just fell on the floor not being pull and broke off she said they would xray and make sure it was still in place and if so we could be released. She basically said that all the other doctors were interns or residents and that they didn't know anything. At least I felt we were getting somewhere and that I sure didn't want surgery if it wasn't needed. About 1:30 p.m. they read the xray and was found to be in place. Now, we just needed to hook up to the central line her TPN/Lipids and then be released. Thank goodness for my nurse because I was totally stress by this time and just wanted to get home. I was so sleepy and need to drive the 100 miles home.


On the way home, we stopped half way to get some water and when I returned to the car the nurse was very upset. Annabel's lipids pump was alarming and it was found that it wasn't reset for the lipids and it infused at a very high rate in 1 1/2 hours vs. the 24 hrs. it should have. The nurse was so sick but we were both so exhausted I found myself laughing and thinking what else can go wrong. One thing I was sure of was that I would not be returning to Houston. I needed to be home where the doctors knew Annabel and we weren't just a number.


So why do I write all of this in such detail????....not really sure, but maybe some sort of therapy for myself. Maybe it is the reality that Annabel is TPN dependant. The doctors aren't sure that her stomach will ever work again. In my mind I go over and over, have I tried everything out there. I keep feeling there has to be something else. This week prior to the line breaking, our liver enzymes were right at 500/again. This could be due to the UTI she was experiencing but it doesn't matter it isn't good. Also, another reason for writing this is that maybe someone with a central line has experienced it just breaking. Could this have been a defective line?? They didn't believe that was likely in Houston since it was so new. I told the story about my pulling the picc line because we are all human and things/mistakes will happen. With Annabel things can change quickly and that make it difficult for the nurses to keep up with the changes.


Annabel is not a hard baby and for this I am thankful. But inside I am torn up with what to do. It isn't like me to give up or stop trying. I am going to attach some photos but basically they are Annabel relaxing and recovery this week and weekend. She loves all the attention from her nurses who treat her like a queen.


A big thank you to my older kids who come by and play with her each afternoon/evening. She loves the interaction that they provide. Also, to Tara who ran back and forth to the hospital for labs this weekend so that Mel and I could travel to Houston to meet our twins for a great day of shopping for them. Also, to Debbie for coming in on Sunday to do more labs. Rebekah was our first nurse and she just took her last test to become a RN, congrats! Also she is on her 5th anniversary cruise and I hope she has a wonderful time with her hubby. Thank you to Debbie, Ashaunti and Tara(new relief nurse) who has taken up the slack! Hopefully, next week I can post something positive.







New Central Line


chillin'


A girl and her best friend, her pacifier!


Loving all the attention


After my hair treatment...

Sunday, November 7, 2010

CMN and ARC

Annabel had a busy weekend planned. She was to make an appearance at the ARC Christmas card kick-off Saturday morning. Here below she is pictured with Sydney Datcher from Keller (near Dallas). Her platform is children with special needs. You see Sydney is living this life with her younger sister, Simone. As you can see she is such a beautiful young lady with such a huge heart. My prayer for her is that she will accomplish all she sets out to do through her life, all the while bringing attention to special needs children.
Annabel was acknowledge along with several other artist that made the cards. Ms. Ann (her teacher) helped Annabel make her card.
After this stop we brought Annabel home to have a much needed nap. You see the night before Annabel spent in the ER for yet another UTI. She has done amazing since May with no infections until about 3 weeks ago. Just this past Monday she had a follow-up culture to make sure the culture was clear and yes it was. But by Friday afternoon her urine was cloudy and on Thursday night she was uncomfortable. So after calling the Pediatrician Friday afternoon, they decided we needed to go into the ER for another culture. You see Monday morning (tomorrow) Annabel is going in for her central line placement and biopsies. The last thing we need is an infection and a central line. So the doctor came back a few hours later and yes, another infection. Not yet, as bad as the first but so soon. So another antibiotic was started and hopefully she will be able to get her central line placed in the morning. Her picc line is hanging on barely by a thread. The stitches are barely there and I have been a nervous wreck babying them.
So after her nap we went to the Children's Miracle Network Radiothon to be on live. She had been on via a taped session on Thursday, Friday and Saturday. There are two radio stations that had her story on and they did such a beautiful job putting her story to music. Each time I listened I realized what a miracle Annabel's life really is. Also a huge thank you to Emily, who is the representative of the hospitals and responsible for putting on this radiothon. She was also responsible for the Children's Miracle Network Telethon that was back in May.
After the Radiothon we went back home until 6p.m. We went to pick up Ms. Ann and then went to the ARC dinner. It was so nice. Again, they announced the artist to come up on stage. Annabel received a t-shirt with her card printed on the front. It was so nice to see these special children and adults so proud of their work and being acknowledged. Thank you to this organization and all they do to help our children.
Annabel with Miss Teen Texas at the Christmas Card kick-off for ARC

Annabel and Tara during the Children's Miracle Networks Radiothon.


Annabel, Mommy and Tara



Annabel and Rebecca with the two DJ's broadcasting the CMN


Annabel and Emily who works for St. Elizabeth and was in charge of the raising of funds for the Children's Miracle Network.



Annabel and Ms. Ann who shared our table at the ARC dinner last night.



Annabel after being presented as an artist for her Christmas card.

Picture of Annabel's Christmas card she made for ARC








Wednesday, November 3, 2010

Tooth fairy?????



Well after 3 attempts at home to pull her very loose tooth, we elected to call our pedi dentist and let him do it. It had been very loose for 3 weeks and there was the contant worry that she could swallow it. She was such a big girl and it was very quick. In one of the pictures she looks scared but I think it happen so quick and she was just curious as to why his hands were in her mouth.
Annabel will be going back for surgery this Monday to place a central line (Broviac) into her chest. Also her GI doctor will go in for biopsies a 3 rd time since June. Please keep her in your prayers that it will be quick and we will return home that night. Also,her new hemotology doctor is getting some concerning results. There have been so few post and I am sorry. There are many things going on with Annabel and I am still processing them. There is still no hope for any type of food into her belly and I am struggling with this also. At this time we have removed her from all outside therapy as it seem too much for her body. She tires easily and is pale many days. I will try to update with the findings after her surgery on Monday.