It will be a day that we will never forget because fear over your child's health is never easy to deal with. I wish we could say we handled it all without any worries or fears but I know I learned to trust in Him even more and was reminded again how powerful Prayer is!
Saturday
This morning Jeremy and I both had sessions with Ashley and she was so eager to go up to her Playroom! We played with balls, playdoh, doctor play kit, Tinker Bell, marbles, books, hats, and jewelry! She said "water (4 times), ball (2 times), drink (2 times), bubbles, I want, this, Viggie (for Veggie Tales book) & Debba (not sure what meant but said at least 10 different times)." I started running in circles which she thought was funny and then she eventually joined me running! Her playroom is the best place to get words out of her where it is distraction free and demand free!
We went to an enclosed playground with other special needs families and Ashley followed around her school classmate. It was so cute seeing the eye contact they were making with each other and Ashley was really wanting to play with her! She did say "juice" while were there. Our challenge with her appetite and being GFCF now is that she will look in other peoples bags for food or try to take others items.
In the afternoon, she had a fun outing with daddy at Play for All Abilities. We all ate together at table tonight and ate same food which we haven't been able to do last week. Ashley did try green beans and ended up eating 2 small pieces!!! She also said "try" during that and later said "muffin" , "this" and "nana" for banana.
Sunday
Ashley had a great time at church and dancing in worship again! She said "dum-dum" and "what" after Alissa said it! After church, she said "juice" 3 times at lunch! She helped me cut up daddy's bell pepper slices for the week and was very interested in seeing the top that we pull out with all the seeds. She saw me eat some of the orange bell pepper so she touched it to her mouth. Then I thought I would cut it up in small pieces so she could start with that. I asked if she would like to try and she said "try" 2 times. She saw me eat a small piece so then she opened her mouth for one! She ate it and then wanted more!!!!! Yay!!! Finally after all these times she has been exposed to them she finally ate it!
She pulled out the tent and brought it to me in the kitchen wanting help to fold open. She was smiling and I asked Do you want the tent to play peekaboo?. She looked at my eyes and said "tent"! She said "tent" 2 more times after that and we had fun again playing peekaboo with tickles! I tried to capture a little on video so she could watch later. I asked Do you want to watch peekaboo? and she said "watch"!
In session with Jeremy, she said "yes" to one of his questions and enjoyed playing with balls. When I was getting her shoes on to leave, she said "shoes" 5 times. We had sweet and sour meatballs for dinner tonight so I asked Ashley to try it. She said "try" and eventually did eat 1/2 a meatball! She said "bow" for bowl to get ice chips and "Awesome" this evening.
I have started giving Ashley a chore each night and that is to help me close all the blinds. She seems to enjoy it and does almost all of them by herself (if she doesn't get distracted)! She is so tall that she has no problem reaching the cord.
Monday
Today was school holiday so this morning we attended an Austin Special Needs event at local bounce house! When I pulled into the parking lot Ashley said "Awesome"! Both kids love that place and it is very hard to get them to leave. We went to a doctors appointment later and she said "pop" for lollipop and "Viggie Tale" for Veggie Tales video! At lunch she said "chips" and "juice".
In session with Becky, she made great eye contact while my mom was singing Veggie Tales and was so intent on listening! She also loved taking my mom's finger and pointing at each Toy Story character in printout. She likes it when we say their names and seems to go back to Mr. Potato Head a lot!
At speech therapy she made great approximation for yellow while they were playing with colored spiders.
In session with me, she said "yes, my (for my turn), big, doct (for doctor), want, tent, brush (for toothbrush), and no 2 times." She said no when I put toothbrush up to her hair and I asked Is this a hair brush?. I brought the tent up to the Playroom and she enjoyed playing peekaboo again! I just had to save a short clip of it here because I love her giggles and her "anticipation" laugh. We also played with doctor toy kit and we practiced looking at each others teeth. I am trying to get her prepared for dentist appointment in a few weeks......
At night she said very clearly "Kitty" for character in Monsters and "ma-buh" for muffin. Sometimes she changes how she says words but we keep acknowledging her words. Lately she is saying "what-tree" for water now but that is only time she says that sound is when requesting water.
Tuesday
At school, she said "yes" and "water". Apparently one of her peers was not feeling too well so this student was fussy all day....Ashley cannot handle being around other kids or babies that cry so today was really stressful and lots of anxiety for Ashley. She came home upset and started lining up her Petshop toys. She has not done this since we started Son-Rise program so I think she was doing this to decompress and "control" her surroundings. Next time I hope they can keep her separated or call me so that I can come pick her up.
In session with me, she said "want, water, ball, bath, & cra-chur" for cracker. We had a good time jumping and running in circles! She said "Awesome"
Wednesday
Today will be a day that we will never forget and how faithful God was to answer specific prayers! Ashley had to get an MRI of the brain at Dell Children's hospital and she did sooooooo well (even recovering from anesthesia). It was the last of several tests (multiple blood tests, bone scan, sonograms) to rule out anything "bad" that is causing a surprising issue. There was a 10% chance she could have had brain tumor causing this to happen. It was a small chance but it was still frightening because it was our baby. For Ashley's privacy, that is all I will say about this. I did write out all that happened because we were in awe of just how smoothly it went! Knowing our daughter this was not envisioned going well especially with fasting.
We pushed her bedtime back last night so she could have big meal before bed which means we changed her bedtime routine. She adapted so well and went to bed quickly (other times we change up routine she head bangs). We were praying too that she would sleep in because she always wants eat first thing and our MRI schedule time got pushed back. She did sleep in and Jeremy took her straight to the bath to play but made sure she didn't drink any of the water. She adapted to that change in routine too! We immediately left for hospital and they took us quickly to our own room. Then they told us our MRI time was pushed back again by an hour...Ashley was already starting to request for food using her Ipad but no full meltdowns yet... How is she suppose to understand why we are starving her? Thankfully our anesthesiologist we requested is a friend and has 5 year old with autism. He was able to pull some strings and get us back on original schedule so she was taken back pretty quickly. The staff at Dell even came in to show her pictures of what would happen and tried to explain it all.
Thankfully they just used gas instead of narcotics so faster recovery and less side effects! Ashley didn't freak out with anesthesia mask and went out very easily while still watching Veggie Tales song on hospital's IPad. That was still hard to watch. Afterwards she awoke slowly and I warned the nurses she would pull out her IV which she started doing. After IV was out, she tossed blanket off and got in her sleeping position.
I took a picture to send to my parents so they could see how she was doing. Do you notice her foot by her face? She prefers to sleep with legs crossed in front and I don't know how she finds that comfortable. Once she awoke from short nap, said "juice" pretty quickly and we got to go home shortly after! By 2pm, she was bouncing back so quickly and already wanting to run around house while wanting to eat tons of food....wow! I think she heard the nurses say that she can eat whatever she wants today since her stomach could be upset! :)
God answered specific prayers today with how Ashley would handle the entire experience and for our peace of mind. It went soooooo smoothly! Good news is that we got results really quickly the next afternoon and we found out that all tests and scans came back clean! Praise God!!!! We are so glad these last few months are behind us and no more waiting! We are thankful there is a treatment too (even if it is super expensive) and we are determined to stay grateful for ALL HE has given us because He will provide! We have 2 beautiful, sweet and healthy kids! We do not understand why this is happening or why Ashley gets an added challenge but we know God is in control & He is good!
I love how God can speak to us through His word and it is exactly what we need at that time. This was my prayer today rewritten from Psalms 62. May my soul find rest in you God. My hope comes from you. You alone are my rock and my salvation. You are my fortress, I will not be shaken. I will trust in you at all times and pour out my heart to you. For you, oh God, are my refuge.
We had our family and bible study classes praying too and it was a huge comfort knowing they were all praying! I love the encouragement, prayers & support that we receive from our church family! We saw God's love poured out onto us by so many texts and emails that morning from these prayer warriors. Marilyn emailed me her beautiful prayer that morning and I had not even thought to pray Ashley would go out peacefully since we haven't had to experience this before. I just had to include it so we can always look back at how powerful prayer is and that God is always there even if He doesn't answer our prayers like WE want! :)
'Lord, surround this family with your supernatural peace and everlasting love. Thank you that you love Ashley even more than they and we do. This condition she is experiencing does not surprise you because Ashley has been “fearfully and wonderfully” made by you. We ask in faith Lord that you would be with Ashley during this MRI today. Give her the perfect amount understanding for what is happening and help her feel your arms around her. I pray that she will go to sleep easily and will wake up peacefully. Help her be brave as she has to wait a while for food and drink after the procedure is over. Lord, we trust you for the cost of this and other procedures for Ashley because you “own the cattle on a thousand hills” and nothing is too hard for you . In Jesus precious name we pray, Amen
Marilyn
Psalm 139:14, Psalm 50:10, Jeremiah 31:3 and 32:27'
This is one of my favorite songs right now "Just Be Held" and it has been fitting for all that has been going on.
She said "juice" at lunch time and "muffin". In a short session with Tracy, she said "Buzz, Rex, balls, shoes" when trying on Tracy's shoes!
Thursday
Today she said "shoes" again when we were putting them on for school. At school, she said "walk, yes, water" and she worked really hard on tablework today!
In session with Tracy, she said "Rex, Buzz, Wood (for Woody), more, nack (for snack), Moose-Moose" (for music and guided Tracy's hand to CD player).
In the evening, she said "bath, water, Awesome and mubba (for muffin)." When I was getting picking up all the shoes that night, Ashley got in front of me and bent down to put her face about 1 foot in front of mine. She was smiling and looking at my eyes! I realized she wanted to play and I needed to stop what I was doing being given that obvious green light. I especially want to encourage her to do that again so I gave her some tickles!
Friday
At school, she said "water, yes, walk, I want, baby, cheese, yes, and buh (for banana)"! They reported that she had an amazing day and was super vocal today! Ashley also made an AABAAB pattern with blocks at school!!!! NO verbal or physical promting!!!! She picked out blocks on her own and did it! Wow!!!! They have been trying to get her to do simple ABAB patterns for last 3 years and she jumps to doing an advanced one! Her teacher sent me this picture and looks like she is so proud of herself! So proud of our beautiful, sweet and healthy girl!
In OT and speech with Brooke, she said "off, yeah, bath, ok, no, veggie, duck, dem (for them), yellow, pillow, quack off, du off (for duck off), water, knees, hah (for hand)" She also did really well working on using a dot paint pen to trace shapes and lines!
In session with me, she said "chee (for chip), chips, water, my, bath, Awesome, and Pet (for petshop toys)". She seemed tired by the time we got into Playroom but she still wanted to go in there. We just jumped and rolled balls today so she could relax and decompress from ALL that she accomplished today! She worked really hard today! At night she said "drink, I want, mubba (for muffin)."
She is also doing so great with her IPad that Zach's Voice organization gave Ashley! She uses it at school and outside the Plaryoom if she needs it. She is making sentences and its great she is hearing the words repeated off IPad and from us. I tried to capture this one on video where she made "I want muffin" sentence so we can always see how well she navigated it and you can hear her repeat "want" and then "mubba" for muffin which she can say really clearly sometimes!
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