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...
Friday, June 21, 2013
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...
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...
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