Her diet and appetite is building every day. Though she still receives elecare (medical food via gtube) we encourage her to take it orally before we resort to hooking her up for a full tube feeding.
A major accomplishment over the past couple months is that we are successfully weaning her off night feeds.
Night feedings have scared me since tube feeding began. Annabelle does the gator-death-roll in her bed and gets herself tangled in tubes and wires.. Just waiting to rip the tube out of her stomach. Not to mention falling out of bed while hooked to a pump = chance of the tube getting ripped out. When she rolls on tubing, it pinches and the pump beeps until we come in to troubleshoot = we are awake, belle wakes up, mady hears commotion, 3am and everyone in the house is angry, tired and awake in the hallways. This happens several times a night. Or even more frustrating, Annabelle will manipulate the pump and tubing to either disconnect herself, increase the feed rate or close the tubing to her tummy which then feeds the bed/floor 30oz of formula during the night.
We are increasing the hours between her necessitating feeds and it's working well. I am very proud of her progress and how she's handling it. Now, this will not always be a safe option, during times in which her body is going thru a growth spurt / she's sick or her little system is demanding more, we will HAVE to connect her to feedings around the clock again. Crisis and danger begins when Annabelle's body demands more than we are giving her.. that is when everything begins to get out of sequence and a chain reaction of events start all over. Those are the times we find ourselves happy on the playground on a Saturday and in the ICU on a Sunday and can't understand why.
That being said, we are very very grateful for the ability to wean Annabelle from constant feeds when her body is stable, she drinks her formula during the night via cup so we dont have to hook her up and she's eating like a teenage boy from a real plate and fork. All things that a tubey mom celebrates way more than I even knew possible.
CINCINNATI UPDATE
Next surgery is scheduled for November 16th. I am still ironing details of the travel dates, but we will likely travel Saturday, arrive and enjoy the city a bit. Check into the hospital Sunday to begin the clean-out process inpatient. We will have appointments Monday morning with Genetics, Immunology and Gastroenterology (praying they will come to us in her private room so we won't have to wonder the hospital halls between ... umm........ rectal irrigations and the cleanout process :(. Finally, her OR time is booked for 330pm and they will take her back to perform everything we did last time. The process shouldn't take too long. Once she is finished and has recovered, we will be discharged to come home. The last time, it took us nearly 6 hours until Annabelle was stable enough to leave the hospital after anesthesia. I am praying it will be much faster this time because our goal is to hit the road back to Richmond, VA immediately so AK and I will not have to miss work Tuesday. We will be running on fumes and few hours of sleep but, tis' life. I will keep you updated as we continue to book more.
BOMBSHELLS FOR BELLE!
Coming up in just a couple more weeks, I absolutely cannot wait for this fun event. The music, classic cars, oh my goodness the prizes and raffles galore, the brewery beer and fun. It's guaranteed to be the best time and great cause. This event will be a little different from that of Answers for Annabelle and I cannot wait to see the variety of love and support from different but equally humble and loving organizations.
"MOTORCYCLE FRIENDS"
Speaking of our "Motorcycle Friends", we see and talk to them all the time. There is never a week that I do not hear from the Guilty Ones as they check on Annabelle and our family. They have been by to visit her and we try to do the same whenever we can. We will forever have an extended family connected with them and I couldn't be more grateful for the leather vests, tattoos and harley's that have walked into our lives.
Last Friday, Bikers for Christ paid our family a visit. In traditional fashion, Annabelle impatiently waited for them at the front door until she heard the rumble of bikes rolling down the streets of our neighborhood - the moment she hears the thunder of a motorcycle, she utterly looses her MIND! It's the most magical, heartwarming thing you've ever seen.
Our friends with Bikers for Christ wanted to come by and check on Annabelle and see how her progress was going, but more importantly, this time their visit was for Madelynne. My heart skipped beat after beat as they kneeled down to talk to Madelynne. She was quite shy and in disbelief when he asked to speak to her:
Madelynne is the best big sister I could have ever asked for Annabelle, but her road isn't easy. She is very sensitive, she's a quiet, delicate little girl that absorbs everything around her. Somehow though, she has never, once, ever complained about the attention her sister receives and she does not. I see it - my mommy heart breaks every single time I have both girls together and the focus is only on Annabelle, or even when I am alone with Madelynne and the conversation between me and another person is only about Annabelle - or when someone else kneels down "How is your sister Mady? Do you take care of your baby sister?" All these things are purelly genuine cares and sincere conversations from perfect strangers, family and friends - but Mady see's it. And she never complains. I remind her almost every day how much I love her and how important she is to this family, to her mommy and daddy, to her God and also to Annabelle. I find unique qualities in Madelynne that only she posseses and why I love each of them individually about her. But still - the parties, the benefits, the attention, the bracelets, tshirts, banners, conversations, donations, gifts etc are centered around Annabelle.
When the bikers kneeled down around Madelynne and looked deep into her eyes, my heart burst. For the first time, we've had 'motorcycle friends' come out for only Mady. They seeked and wanted to praise her for being so courageous, strong and loving. As a gift, they gave Madelynne a year membership to the Science Museum of Richmond for her to bring ANYONE she wants to run, play and have fun. This gift was to Madelynne (though Annabelle can also go, it's a family pass), and she deserves such a special gift and her own time away during the storms of Annabelle-chaos sometimes.
Another small update, AK and I have opened our doors to my sister and her two children that needed a place to live. Their situation is one in which we could not look past as a family, as Christians or as someone who is being SURROUNDED with love, support and prayers from perfect strangers that would do anything to relieve the burden to our family. How could we not open our doors to family - we do have the space (though we're running out.. lol), but we have enough love, faith and strength to get anyone thru a storm. Annabelle is stable and happy. Our family and home is full. Our doors are bursting but it's never felt more amazing. The gift to give back is priceless and more humbling than words can ever describe.
I asked Bikers for Christ to pray for us. They prayed. They prayed beautifully for our family, to help guide us down the future path ahead, to continue to fight for answers for Annabelle and continue to help her grow, thrive, laugh and smile. They prayed for continued prayers and support from everyone that surrounds us. They prayed deeply for Madelynne and all the strength she carries in this family, strength she shouldn't have to but strength she proudly shares with us all. Finally, they prayed for AK and I as we open our doors and expand our family, they prayed for my sister who is fighting a battle we will help her overcome. They prayed that the bursting love, patience and strength we have in our home will continue to carry us all as the days, weeks, months and years ahead unfold into the unknown future.
We are trusting in the Lord to guide us down the path we are destined to be on. We are grateful for everyone that supports and prays for us, without you, I don't know where we could get the strength and courage. Without you all - I don't know where we would be with Annabelle. She's truly a little miracle who has fought and been blessed to every stretch of the imagination.
Thank you , forever and always
Night feedings have scared me since tube feeding began. Annabelle does the gator-death-roll in her bed and gets herself tangled in tubes and wires.. Just waiting to rip the tube out of her stomach. Not to mention falling out of bed while hooked to a pump = chance of the tube getting ripped out. When she rolls on tubing, it pinches and the pump beeps until we come in to troubleshoot = we are awake, belle wakes up, mady hears commotion, 3am and everyone in the house is angry, tired and awake in the hallways. This happens several times a night. Or even more frustrating, Annabelle will manipulate the pump and tubing to either disconnect herself, increase the feed rate or close the tubing to her tummy which then feeds the bed/floor 30oz of formula during the night.
That being said, we are very very grateful for the ability to wean Annabelle from constant feeds when her body is stable, she drinks her formula during the night via cup so we dont have to hook her up and she's eating like a teenage boy from a real plate and fork. All things that a tubey mom celebrates way more than I even knew possible.
CINCINNATI UPDATE
Next surgery is scheduled for November 16th. I am still ironing details of the travel dates, but we will likely travel Saturday, arrive and enjoy the city a bit. Check into the hospital Sunday to begin the clean-out process inpatient. We will have appointments Monday morning with Genetics, Immunology and Gastroenterology (praying they will come to us in her private room so we won't have to wonder the hospital halls between ... umm........ rectal irrigations and the cleanout process :(. Finally, her OR time is booked for 330pm and they will take her back to perform everything we did last time. The process shouldn't take too long. Once she is finished and has recovered, we will be discharged to come home. The last time, it took us nearly 6 hours until Annabelle was stable enough to leave the hospital after anesthesia. I am praying it will be much faster this time because our goal is to hit the road back to Richmond, VA immediately so AK and I will not have to miss work Tuesday. We will be running on fumes and few hours of sleep but, tis' life. I will keep you updated as we continue to book more.
BOMBSHELLS FOR BELLE!
Coming up in just a couple more weeks, I absolutely cannot wait for this fun event. The music, classic cars, oh my goodness the prizes and raffles galore, the brewery beer and fun. It's guaranteed to be the best time and great cause. This event will be a little different from that of Answers for Annabelle and I cannot wait to see the variety of love and support from different but equally humble and loving organizations.
"MOTORCYCLE FRIENDS"
Speaking of our "Motorcycle Friends", we see and talk to them all the time. There is never a week that I do not hear from the Guilty Ones as they check on Annabelle and our family. They have been by to visit her and we try to do the same whenever we can. We will forever have an extended family connected with them and I couldn't be more grateful for the leather vests, tattoos and harley's that have walked into our lives.
Last Friday, Bikers for Christ paid our family a visit. In traditional fashion, Annabelle impatiently waited for them at the front door until she heard the rumble of bikes rolling down the streets of our neighborhood - the moment she hears the thunder of a motorcycle, she utterly looses her MIND! It's the most magical, heartwarming thing you've ever seen.
Our friends with Bikers for Christ wanted to come by and check on Annabelle and see how her progress was going, but more importantly, this time their visit was for Madelynne. My heart skipped beat after beat as they kneeled down to talk to Madelynne. She was quite shy and in disbelief when he asked to speak to her:
Madelynne is the best big sister I could have ever asked for Annabelle, but her road isn't easy. She is very sensitive, she's a quiet, delicate little girl that absorbs everything around her. Somehow though, she has never, once, ever complained about the attention her sister receives and she does not. I see it - my mommy heart breaks every single time I have both girls together and the focus is only on Annabelle, or even when I am alone with Madelynne and the conversation between me and another person is only about Annabelle - or when someone else kneels down "How is your sister Mady? Do you take care of your baby sister?" All these things are purelly genuine cares and sincere conversations from perfect strangers, family and friends - but Mady see's it. And she never complains. I remind her almost every day how much I love her and how important she is to this family, to her mommy and daddy, to her God and also to Annabelle. I find unique qualities in Madelynne that only she posseses and why I love each of them individually about her. But still - the parties, the benefits, the attention, the bracelets, tshirts, banners, conversations, donations, gifts etc are centered around Annabelle. When the bikers kneeled down around Madelynne and looked deep into her eyes, my heart burst. For the first time, we've had 'motorcycle friends' come out for only Mady. They seeked and wanted to praise her for being so courageous, strong and loving. As a gift, they gave Madelynne a year membership to the Science Museum of Richmond for her to bring ANYONE she wants to run, play and have fun. This gift was to Madelynne (though Annabelle can also go, it's a family pass), and she deserves such a special gift and her own time away during the storms of Annabelle-chaos sometimes.
Another small update, AK and I have opened our doors to my sister and her two children that needed a place to live. Their situation is one in which we could not look past as a family, as Christians or as someone who is being SURROUNDED with love, support and prayers from perfect strangers that would do anything to relieve the burden to our family. How could we not open our doors to family - we do have the space (though we're running out.. lol), but we have enough love, faith and strength to get anyone thru a storm. Annabelle is stable and happy. Our family and home is full. Our doors are bursting but it's never felt more amazing. The gift to give back is priceless and more humbling than words can ever describe.
We are trusting in the Lord to guide us down the path we are destined to be on. We are grateful for everyone that supports and prays for us, without you, I don't know where we could get the strength and courage. Without you all - I don't know where we would be with Annabelle. She's truly a little miracle who has fought and been blessed to every stretch of the imagination.
Thank you , forever and always
What a beautiful post! You and your family are amazing. Thankful that Annabelle is stable right now and thankful that Madelynne was blessed too. Continuing to pray. ~Beth
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