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!

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

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!

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

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...

Over the mountain...

And through the woods to Shriner's Hospital we go...

We are back again from Portland and it was a productive trip but still harder than I want it to be. I wish these trips would give us some better news but I know that it just doesn't happen that way with Anabelle's disease. This trip was beneficial though. We were able to get Anabelle's Botox injections done. She got Botox injections in her adductors (inner thighs) to help with diapering and comfort. We decided not to use orthotics after all, so they didn't do her calves. Apparently any one person can only have a certain amount of Botox injected at one time, so they felt it was best to use the amount she could take in her biggest problem area. The PT said that with her thighs relaxed it may help loosen everything else. We decided against the orthotics because it was not going to be that helpful in the grand scheme of things. Honestly, I know that I only have a limited time with my daughter and I would rather spend it with her comfortable than upset because I'm making her wear these things. Between her swim therapy, daily stretches and regular PT there isn't much more the orthotics could do. And she hates having them on and I hate fighting her on them. Also while we were there we were able to get her wheelchair fitted. With my last two blogs we were considering a stander and then we were considering a kid kart. Unfortunately neither of those things happened. According to the PT and the wheelchair fitter Anabelle just didn't have the body support for either of those things. But we got a sweet wheelchair with some awesome add-ons. Hopefully she will be so comfortable she will love it. Also its going to be pink! Which of course makes mommy happy. Hehe.

On her G-Tube... I called Doernbecher's and they said that her referral is in "Medical Review" which apparently means that based on Anabelle's abilities and history they are trying to figure out which doctor is going to do Anabelle's procedure. To me, it seems like that would be a one day thing but of course it never works the way we think it should. We should hear back from them sometime this coming week. It is getting harder and harder to feed her. And what I was afraid of is happening. Anabelle has started losing weight. I guess expressing to these life saving professionals that my daughters case is emergent is not enough to get things moving. So frustrating!

It's been really hard to go through all this stuff with her. Every time we make a trip up there things become so much more real. I have a hard time realizing my daughter is different. I don't want anything to be wrong with her. I know that she is different and I get that, but I just want her progression to slow down. It's starting to feel like the end is sooner than we thought. I am often up at night because I am afraid if I go in her bedroom she wont be breathing. A lot of those fears you have when you first bring them home are starting to come back. I have to watch her floppy head, make sure she doesn't choke, and keep her fed. All without being able to communicate with her. A lot of me feels like that's been the hardest part. I think it would be easier for me to deal with her motor loss if we could still have quality conversations. Not knowing what she is thinking just kills me.

On a brighter note, Anabelle has been approved her Make A Wish and we are just waiting to hear from the volunteers to schedule a visit to the house to set up her wish. I am really excited for this time for our family!

Please don't take my words as a note that you need to call in an intervention to save me from my thoughts. I have a God who can handle all of them and always has better advice. I stand firm in the thought that God has Anabelle in his hands and is cradling her as we speak. I love how strong my God is. He lets me be mad and angry and frustrated and just cuddles me deeper into His chest. My God is an Awesome God!


Until next time...

No news is bad news

We are almost back from Portland and unfortunately it just seems things are continually going downhill... The Neurologist didn't really have any good information for us.  Except he has prescribed her another medication to help with her comfort. Other than that it was all bad news. He said we should start seeing a pulmonologist to monitor her lung function because kids with MLD can get chest infections very easily. He also said with her steady decline in speech it's a pretty good indicator the disease is starting to affect the cognitive part (grey matter) of her brain. We were really hoping that it would be further out but what can we do. She is still very happy playing and being engaged she just may not be on the intellectual level we thought she was.  We also went to pick up her new orthotics but of course they don't fit because Anabelle is just too stiff. We are going to wait and get them in June when we go in for her botox injections. Hopefully the botox will relax her enough to be able to wear her orthodics and maybe use a stander. Speaking of... We were considering getting her the stander in our last blog but since then we have decided to go with getting a kid kart. It looks like a stroller but is actually a wheelchair. I would attach a picture but I'm blogging from my phone. We as usual are feeling somewhat defeated but I am confident she is recieving excellent care. She has her g-tube consult in a week and I'm very excited about that (never thought I'd be excited for such a thing) but having her tube in will give her and us such a better quality of life. Anabelle is almost 2.5 and I will be calling Make-A-Wish on June 11. I really want to get her MAW done before she loses the chance to enjoy it. Still not sure what we're going to "wish" for but I will keep y'all updated. Also Ronn is working on a fundraiser for Anabelle and the MLD Foundation that will be held on Sept 14th at the Deschutes County Fairgrounds. We are planning on a car show. We don't have a name or any of that just yet but please be praying for a successful outcome.  I think that's it for us! Thank you all for your continued support. We couldn't do it without you!!

"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:33