Hey Y'all,
I know it seems to have been forever since I've blogged and each blog seems to be starting out the same way "It's been so long...". The last three months seem to have been the craziest since diagnosis. Anabelle has had sporadic issues all throughout the last 2 years but these last three months have been the most crazy of all. It started with me waking up to Anabelle seizing. These were consistent seizures lasting over 3 hours. They were finally treated after an early trip to the ER and a stay overnight at the hospital. The doctors never figured out just why they happened. The seizures were most likely caused by her fever, but we couldn't find out what caused the fever. Then just two weeks later while I was out of town at a retreat, Anabelle started seizing again. Again another trip to the ER and we had them handled, but this time we knew why the fever had happened-- rhino virus. Anabelle was so strong through all of it and barely cried when we would have to give her added medication, chest PT or suction her nose. Then about two weeks later Anabelle's stroller was stolen from our car. Long story short, we got a brand new stroller bought by the kind people at the Deschutes County Sheriffs office, but it just felt like it was one more thing.
Not long after the stroller debacle was settled Anabelle started having unexplained episodes that looked like seizures but weren't responding to medication or showing up on an EEG. That was when I lost it. I have tried so hard to make Anabelle as comfortable as possible. This was unlike anything I had yet experienced and the worst part was that she was conscious through these episodes and just had this look of panic on her face that completely broke my heart. I hated that I felt like there was nothing I could do. Was this it? Was this the end? Is one of these episodes going to take her life? And how unfair to her to have to live like this. I was devastated for her and was finally feeling like "I'm done. Can this all just be over? Okay Lord, I've learned my lesson, it's time for a miracle!" It's been easy to fool myself into believing that because Anabelle has had no physical changes on the outside, that must mean her brain has not had anymore deterioration, but boy was I wrong! I felt defeated and everyone around me could see it on my face. Ronn asked "Are you okay?" and I lost it. You know that ugly cry where you can't even catch your breath, yeah that was me. I couldn't fix these episodes and the fear in my baby's eyes was truly killing me. I was done watching my daughter suffer. I just couldn't handle it anymore. I know I'm allowed to cry and be angry and get frustrated but I decided early on that Anabelle needs the strongest momma to take care of her and damn it if I haven't lived up to that task! Why can't I fix this? What good am I to her if I cant stop the pain? Ronn suggested contacting the MLD Discussion Email List and I said "no one can help, I've never seen anything like this in any of their kids" and he said "but it doesn't hurt to try does it?" He was right.
So I emailed the other MLD families and within minutes I got a response. "This is PAID syndrome, also called autonomic storming. Her nerves are firing because they don't really have a control center and this medication has helped us tremendously." I contacted her doctor right away! We started her on the medication and immediately the three-every-minute episodes were gone. Ahh, a sigh of relief, but now my baby has to be on one more sedating medication. I want so desperately for her to be comfortable, but at what expense. I often wonder if her smiles would come back if we weened off of some of her meds. Would it help or really just hurt? Why am I walking this tightrope?I'm not sure my balance is good enough.
People often wonder how I could believe in a God that would do this to my daughter. I don't really know how to answer that quite frankly, but here's what I do know:
-God is Sovereign. He has a perfect and complete plan. Studying Revelation this year with Community Bible Study has really taught me what having a sovereign God looks like. It looks like every intricate detail planned out. It looks like hope for no more tears and no more sorrow. It looks like justice, His ways are not my ways.
-God will work all things together for good. He has shown me time and time again the dramatic impact my daughter has made on the world. There will be people one day sharing their testimony and Anabelle's name will be in there, I just know it.
-God is faithful. Not once have I wanted for anything. Sure it would be nice for my daughter to be full and complete but that was not her path. It was not the path He designed for her. Before the beginning of time, God chose Anabelle for the work she is doing and has equipped Ronn and I to be her parents every step of the way.
-Jesus is coming soon. Whether or not it's in Anabelle's lifetime or mine, He is coming on a white horse and His name is Faithful and True. He will establish a new heaven and a new earth that will no longer have sin and pain. My daughter will be full, complete, whole and I will run and dance with her for eternity. And there will probably be people there that are only there because of the work that she is doing now.
That is what I know. That is what I cling to. It still sucks, I'm still sad, I know she will be gone sooner than later, but hope. BUT HOPE! Hope is what carries me through and makes my days just a little more bearable.
Thank You Father for Your everlasting love and faithfulness. You are the almighty and I know I can beat on Your chest as hard as I want and Your shoulder will still be a soft place to land. Thank You for Anabelle. I am blessed to be her mother and count it all joy that she was given to me. Thank You Father for considering me trustworthy for the task, and equipping me. Thank You Father for being a rock. Amen.
Tuesday, May 12, 2015
Monday, November 24, 2014
What a difference a year makes!
HI! I know its been forever since I've blogged but I just thought I would share whats going on in our lives.
This time last year Ronn and I were feeling very blue. It was our first holiday season since Anabelle's diagnosis and I think we weren't really sure how we were feeling about everything. We were blessed by the Sparrow Clubs who gave us an amazing Christmas but unfortunately some of those toys have still gone untouched.
This year, it's still hard but I think we have come to terms (as much as possible anyway) with the path that has been set before us. It still stings a little when we walk through any department store and see all of the things Anabelle just can't play with. This would be the year of a new bike and trying to get rid of our training wheels and more Anna and Elsa stuff than we knew what to do with and it just isn't that way. However, I am feeling so grateful for another year with Anabelle. She doesn't smile as much as she used to but I know she is still in there. She still loves being snuggled and kissed. She has become so much more comfortable over the last year and sometimes enjoys just relaxing on her massage mat and watching Doc McStuffins or Mickey Mouse. I saw a quote that reminded me that Anabelle is exactly who she was meant to be; nothing more, nothing less. I know that God has her in a very special place and I am grateful that I get to see all of the lives changed simply by her presence.
Anabelle's health has been pretty good so far. She is still healthy even through the cold and flu season. She had a bad reaction to the flu shot about a month back but is doing great now. Like I said she is tolerating not always being held more and more, and that is because her Grandma Cheryl (daddy's mom) bought her a vibrating massage pad and she loves being on it (and now she has one for the car thanks to her Granny Jacq). She has no problem letting know when it has turned off (it has auto shut off). We have moved around her feeding and calorie schedule again so I am hoping to see some weight gain. She could use about 10 or 15 more pounds. She is tall though. When I have her stand up in her stander it always surprises me. She is almost 40 inches! She has long legs like her daddy's side. Her hair is growing fast! I am not sure what to do with it sometimes because it is still a little too short for braids or pony tails. She loves preschool and seeing her friends; they are all so sweet to her. She loves water physical therapy, especially now that I have been getting in with her. She is thriving and that is all that I could ask.
I titled this post with "What a difference a year makes" and that isn't because Anabelle has changed much but the world around us sure has. I see things so different now because of her. She is such a strong little girl that didn't ask for any of this. I pray that over this holiday season I find time to be quiet. Anabelle doesn't talk and I truly believe she has conversations with Jesus I don't know about because she is just a much better listener. I am trying to find motivation in that to be quiet myself. Listening to what Jesus has for me each day. I am so lucky to be her mom and as crappy as this situation has been I wouldn't trade that little girl for anything! Happy Holidays!!
Psalms 30:11-12 You have turned for me my mourning into dancing; You have loosed my sackcloth and girded me with gladness, That my soul may sing praise to You and not be silent. O LORD my God, I will give thanks to You forever.
This time last year Ronn and I were feeling very blue. It was our first holiday season since Anabelle's diagnosis and I think we weren't really sure how we were feeling about everything. We were blessed by the Sparrow Clubs who gave us an amazing Christmas but unfortunately some of those toys have still gone untouched.
This year, it's still hard but I think we have come to terms (as much as possible anyway) with the path that has been set before us. It still stings a little when we walk through any department store and see all of the things Anabelle just can't play with. This would be the year of a new bike and trying to get rid of our training wheels and more Anna and Elsa stuff than we knew what to do with and it just isn't that way. However, I am feeling so grateful for another year with Anabelle. She doesn't smile as much as she used to but I know she is still in there. She still loves being snuggled and kissed. She has become so much more comfortable over the last year and sometimes enjoys just relaxing on her massage mat and watching Doc McStuffins or Mickey Mouse. I saw a quote that reminded me that Anabelle is exactly who she was meant to be; nothing more, nothing less. I know that God has her in a very special place and I am grateful that I get to see all of the lives changed simply by her presence.
Anabelle's health has been pretty good so far. She is still healthy even through the cold and flu season. She had a bad reaction to the flu shot about a month back but is doing great now. Like I said she is tolerating not always being held more and more, and that is because her Grandma Cheryl (daddy's mom) bought her a vibrating massage pad and she loves being on it (and now she has one for the car thanks to her Granny Jacq). She has no problem letting know when it has turned off (it has auto shut off). We have moved around her feeding and calorie schedule again so I am hoping to see some weight gain. She could use about 10 or 15 more pounds. She is tall though. When I have her stand up in her stander it always surprises me. She is almost 40 inches! She has long legs like her daddy's side. Her hair is growing fast! I am not sure what to do with it sometimes because it is still a little too short for braids or pony tails. She loves preschool and seeing her friends; they are all so sweet to her. She loves water physical therapy, especially now that I have been getting in with her. She is thriving and that is all that I could ask.
I titled this post with "What a difference a year makes" and that isn't because Anabelle has changed much but the world around us sure has. I see things so different now because of her. She is such a strong little girl that didn't ask for any of this. I pray that over this holiday season I find time to be quiet. Anabelle doesn't talk and I truly believe she has conversations with Jesus I don't know about because she is just a much better listener. I am trying to find motivation in that to be quiet myself. Listening to what Jesus has for me each day. I am so lucky to be her mom and as crappy as this situation has been I wouldn't trade that little girl for anything! Happy Holidays!!
Psalms 30:11-12 You have turned for me my mourning into dancing; You have loosed my sackcloth and girded me with gladness, That my soul may sing praise to You and not be silent. O LORD my God, I will give thanks to You forever.
Friday, September 12, 2014
Anabelle's Angel Glow 5k and Fun walk info + Anabelle update
Hi my non fb friends and those who travel here aimlessly...
Anabelle is doing great! I keep thanking God that she has stayed healthy, other than the obvious. Unfortunately with this disease, it's respiratory diseases, like pneumonia, that can really take em out because they can't cough to get the gunk up and antibiotics only do so much. So please keep praying for health
SOO... 2nd Annual Anabelle's Angel Glow run/walk is just around the corner. October 17th we will be meeting at the Les Schwab Amphitheater at 6:15 for another great event. This year at Angel Glow not only will you be helping Anabelle and all of her needs you will also be helping other kids in the area through Sparrow Clubs. A choice that Anabelle and our family made. We really want to spread the love. For more info visit www.anabellesangelglow.org and get all registered and signed up for the big event! See you there!
Anabelle is doing great! I keep thanking God that she has stayed healthy, other than the obvious. Unfortunately with this disease, it's respiratory diseases, like pneumonia, that can really take em out because they can't cough to get the gunk up and antibiotics only do so much. So please keep praying for health
SOO... 2nd Annual Anabelle's Angel Glow run/walk is just around the corner. October 17th we will be meeting at the Les Schwab Amphitheater at 6:15 for another great event. This year at Angel Glow not only will you be helping Anabelle and all of her needs you will also be helping other kids in the area through Sparrow Clubs. A choice that Anabelle and our family made. We really want to spread the love. For more info visit www.anabellesangelglow.org and get all registered and signed up for the big event! See you there!
Thursday, May 29, 2014
EXTRA! EXTRA! READ ALL ABOUT IT!!!
I'm so sorry I haven't been blogging more regularly. Since I created Anabelle's Facebook page it has been easier to update everyone on there. I realize a lot of you may not have Facebook so I will do a quick catch up...
September: G-tube placed!! Yahoo!! Anabelle now has been receiving the proper nutrition. She still hasn't gained any weight but we are currently (May 2014) working to fix that.
October: Angel Glow!! With the help of some really amazing people we pull off our first ever 5k in Anabelle's honor. We raised $20,000 in 6 weeks!! Phenomenal! Look forward to 2nd Annual October 17 2014
November: We travel to California to see family. We plan to make it down there again this year but travel is getting more difficult...
December: Anabelle turns 3!! I can't believe just how fast she is growing! We are so happy to have her for another year but also know that means we are one year closer to the inevitable.
January: Anabelle starts preschool! Because of a previous commitment she only goes once a week on Thursdays instead of two days. Since this school year is coming to a close we are looking forward to her moving to two days a week next year. It is really the highlight of her week.
February: We traveled to Pittsburgh to meet with the specialist in Anabelle's disease. We learned more about it and moved forward on some important decisions for her health. The doctor is hopeful she will outlive the average and probably be with us for at least 5 more years. Ronn and I are excited but also a tad scared.
March: Ronn and I celebrated 4 years married (yay!) but it also marked one year since diagnosis. Wow! A lot has changed between Ronn and I, and with Anabelle in the last year!! I'm so thankful to still have such an awesome guy beside me fighting this awful disease!
April: Per our visit with the Specialist, Anabelle has surgery on her feet and legs. The intention being that we get her back into a standing frame to help support her bone density as well as her lung and digestive health. Anabelle handled surgery like a champ!
May: Anabelle stands up in her stander for 30 minutes after not bearing weight on her legs in a year! AMAZING!! Anabelle also got her casts off mid month but the left foot wasn't as corrected as we thought. Now we are struggling with whether or not to put her through surgery again or adjust for her current issues, although they are contrary to what medicine wants us to believe. We are going to try to adjust for the current situation and see how far she will let us push her before I can't see her hurt anymore.
She is such a trooper!! It's so amazing looking back on the last 8/9 months and seeing how much she has endured and, more often than not, with a smile on her face. We have been overwhelmed with support and encouragement from all of our friends and family! I promise to stay more active on my blogging page in the future. Thank YOU!!!!
May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope. Romans 15:13
September: G-tube placed!! Yahoo!! Anabelle now has been receiving the proper nutrition. She still hasn't gained any weight but we are currently (May 2014) working to fix that.
October: Angel Glow!! With the help of some really amazing people we pull off our first ever 5k in Anabelle's honor. We raised $20,000 in 6 weeks!! Phenomenal! Look forward to 2nd Annual October 17 2014
November: We travel to California to see family. We plan to make it down there again this year but travel is getting more difficult...
December: Anabelle turns 3!! I can't believe just how fast she is growing! We are so happy to have her for another year but also know that means we are one year closer to the inevitable.
January: Anabelle starts preschool! Because of a previous commitment she only goes once a week on Thursdays instead of two days. Since this school year is coming to a close we are looking forward to her moving to two days a week next year. It is really the highlight of her week.
February: We traveled to Pittsburgh to meet with the specialist in Anabelle's disease. We learned more about it and moved forward on some important decisions for her health. The doctor is hopeful she will outlive the average and probably be with us for at least 5 more years. Ronn and I are excited but also a tad scared.
March: Ronn and I celebrated 4 years married (yay!) but it also marked one year since diagnosis. Wow! A lot has changed between Ronn and I, and with Anabelle in the last year!! I'm so thankful to still have such an awesome guy beside me fighting this awful disease!
April: Per our visit with the Specialist, Anabelle has surgery on her feet and legs. The intention being that we get her back into a standing frame to help support her bone density as well as her lung and digestive health. Anabelle handled surgery like a champ!
May: Anabelle stands up in her stander for 30 minutes after not bearing weight on her legs in a year! AMAZING!! Anabelle also got her casts off mid month but the left foot wasn't as corrected as we thought. Now we are struggling with whether or not to put her through surgery again or adjust for her current issues, although they are contrary to what medicine wants us to believe. We are going to try to adjust for the current situation and see how far she will let us push her before I can't see her hurt anymore.
She is such a trooper!! It's so amazing looking back on the last 8/9 months and seeing how much she has endured and, more often than not, with a smile on her face. We have been overwhelmed with support and encouragement from all of our friends and family! I promise to stay more active on my blogging page in the future. Thank YOU!!!!
May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope. Romans 15:13
Thursday, September 19, 2013
Woah! It's been 2 months!?!
Hey all!!
I am so sorry I haven't blogged in such a long time. I had to read my last blog just to see where I left off. So here we go:
Anabelle still has her NG tube unfortunately. I absolutely hate the stupid thing (except that it feeds her) because we constantly have to change it out, it gets clogged, and the tape on her face only gives people something else to stare at. She is not gaining as much weight as she did initially she has leveled out quite a bit. However, her surgery for the G-Tube is coming up on the 30th of this month. I am so excited to get this thing placed, but I'm also a little scared for her first surgery. The surgeon assures us it is a relatively simple procedure and he feels really good about it. It should take about an hour to complete and I think we will be staying overnight. She is having the surgery done in Portland at Doernbecher's. Today she had an x-ray to make sure her intestines are working properly. I havent heard the results from that yet. We're hoping that with the G-Tube we will be able to do some more calorie dense foods to help her gain weight.
Anabelle is starting to really struggle with sleep. She is now on two different medications to help her sleep at night. When she struggles with sleep, we struggle with sleep. Now that we have the medications it is really helping. We also had to up her meds for her muscles and her pain. I'm not really a fan of that but whatever makes my baby comfortable.
Unfortunately, Anabelle is no longer talking. She doesn't have any words. However, on the plus side she still laughs so much! And I love making her laugh. I talk to her all day and love to talk to her about things that make her happy. She is also no longer moving. She can mover her arms but not with any precision. She is doing really well with being content with her situation.
Our Car Show fundraiser got cancelled unfortunately. We just didn't get enough cars to put on a good show. However a friend of our family has put together a great new fundraiser called Anabelle's Angel Glow 5k. For more information about this event visit www.angelglow.org. We are so excited about Bend's first glow run!
Now for the fun part! We went to Orlando for Anabelle's Wish trip and had a blast! We got to go to Disney, Sea World, and Universal. We went to Universal our first day and got to see the Barney show and meet Barney. Anabelle was so happy to meet Barney! We also got to see a few other shows while we were there. We went to Disney 3 different days. First day we went to Magic Kingdom (identical to Disney in So Cal) and went on all the rides they would let us take Anabelle on. She absolutely loved Dumbo ride!! She also liked the tea cups (mommy and daddy left a little nauseous)!! She also loved meeting the characters! Mickey was her favorite!! Duh! Then we went to Sea World and we got to feed the dolphins. I think most of you got a chance to see the picture. She was crazy excited about the dolphins. Shortly after that a huge thunderstorm rolled in and they shut down most of the park. The place we stayed at called Give Kids the World was fantastic! They had meals available for us 3 times a day. They had an Ice Cream Parlor that served ice cream from 7:30 in the morning to 9 at night. We were able to place a star on the ceiling of the main tower that will be there forever. She also made a cute little pillow. They also gave Anabelle a different toy every day. We came home with a whole extra duffel bag full of stuff. Our family was treated fantastically! Make-A-Wish did everything they could to make us feel really special.
I know I say this every time but I am truly thankful for all of the support we have been given over the last almost year (I know crazy right?!). You guys are so great!! God has big plans and big outcomes for all of us through Anabelle's life. You are one of Anabelle's Angels!
I am so sorry I haven't blogged in such a long time. I had to read my last blog just to see where I left off. So here we go:
Anabelle still has her NG tube unfortunately. I absolutely hate the stupid thing (except that it feeds her) because we constantly have to change it out, it gets clogged, and the tape on her face only gives people something else to stare at. She is not gaining as much weight as she did initially she has leveled out quite a bit. However, her surgery for the G-Tube is coming up on the 30th of this month. I am so excited to get this thing placed, but I'm also a little scared for her first surgery. The surgeon assures us it is a relatively simple procedure and he feels really good about it. It should take about an hour to complete and I think we will be staying overnight. She is having the surgery done in Portland at Doernbecher's. Today she had an x-ray to make sure her intestines are working properly. I havent heard the results from that yet. We're hoping that with the G-Tube we will be able to do some more calorie dense foods to help her gain weight.
Anabelle is starting to really struggle with sleep. She is now on two different medications to help her sleep at night. When she struggles with sleep, we struggle with sleep. Now that we have the medications it is really helping. We also had to up her meds for her muscles and her pain. I'm not really a fan of that but whatever makes my baby comfortable.
Unfortunately, Anabelle is no longer talking. She doesn't have any words. However, on the plus side she still laughs so much! And I love making her laugh. I talk to her all day and love to talk to her about things that make her happy. She is also no longer moving. She can mover her arms but not with any precision. She is doing really well with being content with her situation.
Our Car Show fundraiser got cancelled unfortunately. We just didn't get enough cars to put on a good show. However a friend of our family has put together a great new fundraiser called Anabelle's Angel Glow 5k. For more information about this event visit www.angelglow.org. We are so excited about Bend's first glow run!
Now for the fun part! We went to Orlando for Anabelle's Wish trip and had a blast! We got to go to Disney, Sea World, and Universal. We went to Universal our first day and got to see the Barney show and meet Barney. Anabelle was so happy to meet Barney! We also got to see a few other shows while we were there. We went to Disney 3 different days. First day we went to Magic Kingdom (identical to Disney in So Cal) and went on all the rides they would let us take Anabelle on. She absolutely loved Dumbo ride!! She also liked the tea cups (mommy and daddy left a little nauseous)!! She also loved meeting the characters! Mickey was her favorite!! Duh! Then we went to Sea World and we got to feed the dolphins. I think most of you got a chance to see the picture. She was crazy excited about the dolphins. Shortly after that a huge thunderstorm rolled in and they shut down most of the park. The place we stayed at called Give Kids the World was fantastic! They had meals available for us 3 times a day. They had an Ice Cream Parlor that served ice cream from 7:30 in the morning to 9 at night. We were able to place a star on the ceiling of the main tower that will be there forever. She also made a cute little pillow. They also gave Anabelle a different toy every day. We came home with a whole extra duffel bag full of stuff. Our family was treated fantastically! Make-A-Wish did everything they could to make us feel really special.
I know I say this every time but I am truly thankful for all of the support we have been given over the last almost year (I know crazy right?!). You guys are so great!! God has big plans and big outcomes for all of us through Anabelle's life. You are one of Anabelle's Angels!
Wednesday, July 17, 2013
Quick Update
I am happy to report that not really a lot is happening with Anabelle right now... She has had her NG tube for 3 weeks now as of Thursday and I will weigh her again. So far she has been gaining a pound a week which has been fantastic (two pounds total)!! I think about a pound on me and it doesn't seem like much but on her it is much more! She looks great. She seems to be feeling a lot better! I'm going through WAY more diapers! She is babbling at me more which I love. It brings me joy just to hear her voice! Our fundraiser Cars for C.A.R.E has turned into so much more than we thought it would. We are in the process of turning into a non-profit charity so we can give to other families in need and make this thing a real business! Check out our Facebook page at www.facebook.com/carsforcareMLD Ronn and I are really excited for the Car Show in September! Also we got our dates for Anabelle's Make A Wish and we will be going to Orlando Florida from Aug 20-26 and will be going to Walt Disney World, Sea World and Wild Animal Kingdom! It's going to be so much fun. Just Ronn, Anabelle, and I will be taking the trip. We were really hoping to take all of our family but MAW just didn't have the budget for that. It's okay though because I know were going to make some great memories!! That is really all I've got on Anabelle's situation. Isn't it so great that my blog is only a paragraph long! However there is a lot on my heart... and if you head over to my new blog "A Mother's Heart" (www.anabellesmommy.blogspot.com ) I am going to start blogging more about what's on my mind for me personally. Thank you all for your kind words and endless support! "Therefore encourage one another and build each other up, just as in fact you are doing" 1Thessalonians 5:11
Thursday, June 27, 2013
FINALLY SOME GREAT NEWS!!!!
Today started out pretty normal with Physical Therapy at 9 am and then Anabelle had a appointment with the pediatrician at 9:40 so we had to boogie over there, and of course I got lost! Finally we made it and the doctor was still willing to see us. They weighed Anabelle and this time she was 2 pounds under her regular weight so I was super bummed. And previous to the appt. the g-tube people called and said it wouldn't be until August 9th that we get her g-tube. I was just spiraling down and the day just felt like it was getting worse! I was discussing some options with the doctor and she said that we could do an NG tube which goes in her nose and then down to her stomach. Sounded like great news but I just felt like it was going to be another 3 weeks until we could do that. And then she said "We can do it today here in the office" I just starting crying. I think after all the waiting and the let downs and Anabelle losing weight I was just overwhelmed with "happy tears." God is so good isn't He! I knew there was going to be some great bright shining light soon! So they didn't have the size tube they needed at the Westside clinic so we met her doctor at the Eastside clinic at 4:30 and Anabelle got her NG tube! We then went to the Home Health Nursing office to get a pump for her tube and some other supplies. We got home and Anabelle got to have her first feeding and my sweet little baby went to sleep with a full tummy. Praise the Lord!!! I cannot even begin to express how excited I am. This will be just a temporary fix until we get her g-tube. Oh man I am out of my skin so excited that my baby is going to enjoy the feeling of being nourished and maybe put on some weight. YAY! Such a great day! Also we picked our Make A Wish and will be taking it around the second week in August. We will be staying at Give Kids The World in Florida (look it up it's awesome!) for 6 nights 7 days and we will get to go to Disney World, Sea World, and Animal Kingdom. This will be such a great trip for our family we are so excited. After such a heavy road of big blows it's nice to have some treasures along the way. Thank you all for your consistent thoughts and prayers. We love you all soo much! Until next time...
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