Tuesday, May 6, 2014

What's better than a feeding tube???

A Glow-In-The-Dark Feeding Tube!!! 

Daddy's flashlight can make it glow without darkness!

Can anyone find Ana??!

     It's the little things in life that make you smile! Ana says, "this is the best invention since sliced bread!"
     I want to say "Thank-You" to AMT for creating this device and putting a smile on my little girls face! It is practical for nighttime hook-ups and super cool for kids!!! 
     Ana's stomach was glowing through her shirt in the movie theater today and we laughed harder than we have laughed in a long, long time! I asked her if she was hiding a lightening bug!
 ;0) lol

Monday, March 10, 2014

Home Sweet Home

     We are so happy to be home! Ana is doing great... tired and weak from this episode, but definitely improving! She will have several appointments in the coming days and weeks so please continue to pray about those visits. Pray that she doesn't pick up any colds or illnesses when we go to these appointments. 

Pray for Ana's upcoming schedule:

  • Pediatrician this Wednesday
  • Pediatric Dietitian in 2 weeks
  • Pediatric GI in 4 weeks
  • Renal Ultrasound in 6 weeks
  • Pediatric Urology in 6 weeks
  • Pediatric Neurology in 4 months

Other Prayer Requests:
  • Pray for Shey to find a job. 
  • Pray for the Lord to provide financially until he does secure employment.
  • Pray for Baden's upcoming endoscopy at MUSC.
  • Pray for Baden's dermatology appointment. His biopsies came back and he has a few moles that have to be removed.
  • Pray for Emily's upcoming appointment with the oral surgeon about her wisdom teeth... one or more may be impacted.

     Ok... so there you have it! Never a dull moment in the Bennett household. I think typing everything out is overwhelming for me and I think that is why I blog so little lately. Our schedule is scary without the appointments! There is karate, homeschooling, violin, choir, my 5 college classes, AWANA, and more! Aside from the medical stuff there are lives to be lived... friends to visit... places to see... and an awesome God to be worshipped! I try to live moment by moment... day by day... because the big picture can be intimidating at times. God's Word reminds us that we are not guaranteed anything other than the moment we are in so worry is unnecessary. Worry can keep us from doing the very thing God wants us to do. 

Somebody is very happy to have their big sister home!!!

Good News!

     Thank you for all of your prayers and support! I am humbled by the outpouring of support for our family. God is so faithful and I am so thankful for His faithful servants who are so willing to be used for His Glory! 
     Ana is doing much better! She did have to have a new I.V. placed last night, but she was so brave! Not even a tear! She is up to her needed 65cc's/hour of Elecare and may get discharged this evening!!! She has spent the day making gifts for her sisters, playing with her daddy, and listening to a church musical she is going to participate in this spring! A picture is worth a thousand words!

The musical playing! lol
A happy Ana making gifts for her sisters!

Sunday, March 9, 2014


     Things are going very well, but very slow. Ana's feeds are finally up to 20cc/hr! At the moment they are only increasing by 10cc's every 12 hours... so this is going to take a while. She is feeling much better and that is the most important thing right now! Thank-you for all of your prayers!
Current Prayers and Praises:

  • Praise God that her blood cultures are still negative.
  • Praise the Lord that she was able to order her lunch and eat... even though it was only a few bites... of a cookie... she gave it her best effort!
  • Praise God that the doctors were able to confirm through tests that she does have a virus and nothing worse.
  • Pray that feeds continue to go well and she can go home soon... she is really tired of all of the blood draws... unfortunately with a metabolic crisis the doctors have to check and recheck blood levels until all levels are back to normal... especially her lactate.
  • Pray about Ana's I.V. Her little veins are not holding their own and they are anticipating that they will need to place another I.V. very soon. She is discouraged because she just had one replaced last night. Her little arms and hands look like pin cushions.

Saturday, March 8, 2014

Starting Feeds

     I wanted to take a moment and thank everyone for their prayers and support. Ana's fever broke and the doctors are going to attempt to start her feeds within the hour. Those of you who know Ana know that this can be a long and tedious process. Feeds will start at 10cc's/hour and will be increased by 10cc's after several hours. This process will continue until she reaches her usual 65cc's/hour. If she does not tolerate the feeds at any point they will stop them and put her on another round of gut rest before they attempt them again. So we need you guys to pray! Pray that this is successful and that we can go home tomorrow! Ana has been stuck 6 times today and she really wants to go home. 
     I am going to go sleep... I have had very little sleep... I promise to update in the morning unless we need more specific prayer through the night. Good-night.

Quick Update

     Ana's fever just spiked to 103. Blood cultures have been drawn just to be on the safe side. Cold packs are in place and fever meds have been given. Fever is very bad for kids with mitochondrial disease so please pray for it to go away. 


     Hmmm... where do I begin... this week was our spring break and it was filled with appointment after appointment. Ana saw surgery to discuss some issues she has been having with her g-tube and urology to address some issue with her bladder... these visits required two days at MUSC... and it is that time of year... the time of year when viruses run rampant. Wednesday night after we returned home from a busy day at MUSC and then church, Isabelle became extremely sick with fever, headache, and vomiting. We took extra steps to quarantine her in the hopes that Ana would not get sick, but those measure were unsuccessful. 
     So, last night while we were at our small group dinner I got the dreaded text from my mom... "Ana started retching (remember, she cannot throw-up), I gave her nausea meds on tongue, and hooked her up to a vent bag." Now, while many of you will have no idea the significance of this, I knew right away that this was not good. I asked my mom to restart feeds and to notify us if she started retching (also known as dry heaving) again... twenty minutes later I got the text, "You better get home." By the time we got home she was in a lot of pain and unable to control the retching... and to make matters worse, her g-tube was clogged from a couple of noodles she had for dinner. Daddy started packing the suitcase while I called to notify her specialist that we were on our way to the MUSC ER. The older kids helped me change her g-tube and we loaded the car for the journey to Charleston. The first half of the ride was unbearable to witness as she was in so much pain, but then God began to answer the prayers of our prayer warriors and she fell fast asleep! 
     When we arrived at the ER (10:45 PM) the staff was waiting on us and she was taken straight back. Labs were drawn, the I.V. was started, and x-rays were taken. Her team was notified of the situation and fluids were started to counter the metabolic crisis starting to take place in her little body. Orders were sent to the floor and we were taken to her room at 2:30 AM. She was finally able to settle down around 3:30 AM, but the episodes of retching woke her up every twenty minutes or so. 
     This morning has been full of visits from her specialists, nurse, PCT, and residents. She still has a fever, a headache, a feeling of weakness, and episodes of retching. Her metabolic labs are a little elevated. The plan for now is I.V. fluids and gut rest. Her team should be making rounds shortly and we will know more then. 
     Sorry if this is all over the place... I have had about two hours of sleep.
 How to pray... 
  • Pray for Ana to get better quickly.
  • Pray for her team to know how to treat her and to be sensitive to her needs.
  • Pray for Shey and I as we are functioning on very little sleep... and that is NEVER a good thing in a stressful situation.
  • Pray for our children and my mom who are at home... that they would not get sick.
  • Pray for God to provide financially... Shey has now been out of work for 6.5 weeks and eating every meal at the hospital is costly.
  • And please pray for her sore little hands... she has been so brave...


Thursday, January 23, 2014

God Knows

So thankful that it is God who has
our days numbered... and not man!

     Wow... I can't believe how long it has been since my last update. All has been well with Ana over the past several months. There have been some weight issues, muscle cramping, and feeding adjustments in the past couple of months, but nothing majorly bad happening. She is growing like a weed, riding horses, participating in karate, playing the violin, and singing in the choir! Some days her schedule is busier than mine... and it is so wonderful watching her live her life as "normal" as possible! Ana never lets her disease get in the way of the things she loves to do and that is a quality I love about her... DETERMINATION=> Purposing to accomplish God's goals in God's timing regardless of the opposition (II Timothy 4:7-8). I am so thankful that she is not faint-hearted!
     Ana has inspired me... helping her has brought to light a passion I have always had for helping others. I have no idea what it will lead to or what God's plans are for my future, but I am in nursing school. I have always had a desire to be a nurse and taking care of Ana has only made it grow! I pray that God will use me however He sees fit. I want to help children who are sick... I want these children to have the same hope Ana has in Christ! So, as you can imagine, I have been quite busy homeschooling four children, tending to Ana's medical needs, and attending college full-time. Life is busy... sometimes busy is good... sometimes busy is a blessing... as long as we rest in Him... as long as we seek Him in our busyness. Our whole family is learning... FLEXIBILITY=> Not setting our affections on ideas or plans which can be changed by God or others (Colossians 3:2). 
     On another note, we need our prayer warriors to start praying! Shey was laid-off this week and he is in need of work... preferably work with benefits... Ana needs good quality insurance, so she can continue to have access to good quality care. Pray for the financial aspects of her care. We continue to have to pay for things out-of-pocket and that will only increase without private insurance. Just recently the nutritionists learned that she is too low in fluid intake and too high in calories for her metabolic instability. This has led to mixing her already diluted formula with Pedialyte... Have you priced that stuff lately??? It is so expensive... Just pray... Pray for financial provision. I know God is in control... I know that He knows her needs... I know that He will take care of her... FAITH=> Visualizing what God intends to do in a given situation and acting in harmony with it (Hebrews 11:1).
  And God keeps sending me right back to Matthew 6:25-34...
For this reason I say to you, do not be worried about your life, as to what you will eat or what you will drink; nor for your body, as to what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air, that they do not sow, nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not worth much more than they? And who of you by being worried can add a single hour to his life? And why are you worried about clothing? Observe how the lilies of the field grow; they do not toil nor do they spin, yet I say to you that not even Solomon in all his glory clothed himself like one of these. But if God so clothes the grass of the field, which is alive today and tomorrow is thrown into the furnace, will He not much more clothe you? You of little faith! Do not worry then, saying, ‘What will we eat?’ or ‘What will we drink?’ or ‘What will we wear for clothing?’ For the Gentiles eagerly seek all these things; for your heavenly Father knows that you need all these things. But seek first His kingdom and His righteousness, and all these things will be added to you.
“So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own.     
Thank-you for your prayers... 
thank-you for your continued support.

Thursday, April 11, 2013

Home Sweet Home

We are home! Ana is doing great. We have to go back Friday for more labs, her liver enzymes are still high. If you could keep praying about this we would appreciate it. They were hoping these levels would have come down, but they are still very high. I will update again after Fridays appointment.

Wednesday, April 10, 2013

Doing better!

Scattered thoughts about today...

  • She is feeling nauseated on and off, but doing well. Her feeds were started back at 10cc's an hour and she tolerated them with I.V. Zofran... now the real test begins... she is at 30cc's per hour and not on Zofran! Praying she tolerates them all night and can get up to her 55cc's per hour by tomorrow afternoon!
  • As for her heart rate, it seems to be more normal at the moment. It has been back and forth between normal and low all day. I think the plan is to talk with cardiology and get their expert opinion tomorrow... in the meantime we wait and focus on feeds. 
  • This morning they thought she might have pneumonia because of crackles in the lower lobes of her lungs, but that has since been ruled out. 

Not the best day...
There you go! That's all I have for now. Please keep praying! God is listening! We have been blessed with the nursing staff... He even knew we needed the encouragement of a familiar face! A fellow believer to watch over Ana all night! How great He is!!!

Sore little hands and finger tips.
Sage loves eating at the hospital... is that weird? She asks to go out to eat at the hospital... lol.