My heart is so very full right now so I just need to share. You know sometimes I am not the most patient person. I would love for God just to lift me up and place me on that higher ground rather than having to work my way up there and hitting those bumps and getting bruised. I know though if that were to happen I would miss so many lessons that He wants me to learn & I know that I need. The past few days have been a journey filled with so many blessings, so many people placed there to help feed my soul and my stomach, and truly enrich my life. I am blessed!
Thursday was such an incredibly hectic day. Our friend brought over lunch but right before she got there the vision therapist came to work with Michala. Then the respiratory therapist came for Abe but the tech hadn't gotten here to deliver the oxygen. He got there and started bringing in all kinds of oxygen tanks. I stress with medical equipment at times cause I hate having it all over the place and we don't have enough storage spaces to have it put up some where. Then our friend gets here with lunch. So we have all this going on at once. The vision therapist gets done but can't leave because her car is blocked in. The tech gets done but finds out he didn't bring the portable tanks that we needed. He will bring those out tomorrow. The respiratory therapist gets done and everyone is gone. WHEW!!!
No not yet. The phone starts ringing. I have a doctor on my cell phone and one on the home phone. The GI doctor read the PH probe report and Abe is refluxing. The amount of times is not terribly significant but the times when he is doing it is. He is either asleep or having a seizure when it's happening. The fear is that he would not be able to cough that up or it may be going directly to his lungs. So she has recommended to the surgeon that he have a Gtube and fundo done at the same time. We will meet with the surgeon on Friday morning.
The plan was to do the gtube, fundo and muscle biopsy all at the same time. However several of Abe's doctors got together Thursday and met. They have decided it's too big of a risk to put him through that much at one time. They are concerning it will put his little body into crisis. Along with the pain being too much for his body to handle and causing more seizures, more stress and more crashing with his glucose. So we will put the muscle biopsy off.
All this conversations with Neuro, GI, peditrician & surgeon took most of the afternoon. I was thankful when it was time for Marlee Anne and I to head out. It was so nice to breathe in the cold air. Well at least for a little while then I was glad to be warm again. We went to see Grace in her chorus concert at school. We really enjoyed it. Afterwards they took Marlee Anne with them to eat. I hated to see them leave without me but was thinking I should head home. When I called Mike he said you don't want to go. When I said yes he said they were all fine and to go. What a blessing. To sit and fellowship, laugh and of course my favorite eat was wonderful. I love going to eat with them because Uncle Papa orders one of everything and I get to enjoy a bite or two of each thing. Grace and I even went to Target to get me a Starbucks. They beat us home. When we got there Mike said you are better aren't you. Getting out for a little while gave me an extra boost I needed. There was even a fresh baked pavlovia waiting on me.
Friday was a slighty less eventful day than the day before. The portable oxygen tanks were delivered so we would have a way to get Abe out this weekend. That night I got to work on some crafts I wanted to do.
Saturday morning we were up and out early for the Fragile Kids Foundation Christmas party. We had brunch with Santa at Ray's on the River. We were nominated by some friends of ours and we had a wonderful time! We were adopted by the Neiman Marcus Marketing Team. Two of them came and had breakfast with us. It was such a treat!
Not long after we got home our neighbor called us and her church came over to carol at our house. We took Mary Elizabeth and Michala out to enjoy too. We all really enjoyed it. It was such a treat. Then she brought a plate full of freshly baked cookies up to us.
Mike and Marlee Anne headed out to get more leaves. While the rest of us had a semi relaxing afternoon. That night while they watched Fred Claus I took a nap. YEA! My body needed that especially because we were weaning him off the oxygen & I knew it would be a long night.
Sunday we got to go to The Lighthouse Christmas Party. What a blessing! It was so very wonderful to see our "family" and friends. It was so nice to spend time with all of them. We left there early so we could get back for Twighlights at Chimney Park.
Mike dropped Marlee Anne & I off so he could take everyone else home. It was took cold to get the others out. Mom tried to figure out a way to come sit with them so Mike could go with us but it was too late for her to come over and truthfully she was a little nervous about Abe. Mike had already seen it with all the lights on but it was something we had really wanted to do together.
This really should be an email of it's on. The mood was set among the woods. As you walked in you could hear the laughter of the children playing, the singing, the people all enjoying each other. If you stopped and look I think you could imagine the house still being there and all this happening right inside. You could hear the fire cracking and smell the warmth of it. Marlee Anne took off running through the leaves. I met up with a dear friend as I walked up. There was even a beautiful owl right outside. You could smell the popcorn, hot chocolate and apple cider. The smells could warm your soul. As if that wasn't enough there was hugs from all over. To have worked, dreamed and see this becoming a reality was more joy than my heart could hold. When I heard the excitement in Marlee Anne's voice as she said mommie see this, mommie look at this, mommie I did this. She was so filled with joy to have seen this project come to life. To see my friends that share this dream with us. To feel there embrace. To know they were proud of it all. To know there were excited that I was there. To be welcomed. It was an overwhelming pleasure.
My family was there. It meant so much for my sister, nieces and nephews to be there to share this with us.
Everything was perfect. I wish we would have had recorders so that we could hold on to everything everyone was saying. It was so wonderful to hear everyone saying how beautiful everything was. I hope that those of you that worked so hard on this heard what people were saying. Ya'll did an amazing job! Thank you! Thank you from my family, thank you for doing this for us, thank you for making our dream become a reality, thank you for taking us in, caring for us and loving us so much! Ya'll are the best!
OK I don't know who thought of the fairy houses or who made them but ya'll get top stars for that one. Several people loved them. Marlee Anne was so very impressed. She just knows that the fairies made them. She loved showing those to everyone especially the people that were searching for them and couldn't find them. She can't wait to take her granmama over there and show her.
She and I didn't have a way home. We were hoping to hitch a ride with someone. Just then my other sister came so Marlee Anne was so excited to get to show them everything. They took us home and spent some time with us. Another addition to my renewed spirit. I am blessed!
I know this was another long email. I will try to do better and write more often so that they aren't quite so long. Thank you for continuing to let me share my heart with ya'll. I have so many pictures to share. Too many to email. I posted them on my facebook but will try to get some up on my blog or send links to them