Well I have almost lost my cool today. Andrew woke up at 4 am screaming again. This is becoming an everyday occurrence. After climbing in the bed with him he went back to sleep for 20 minutes only to stay awake the rest of the morning swinging back and forth with his hands while I tried to sleep. We made a mad dash to get ready for church and off we went. It was loads of fun pulling him out of the car seat with bag, purse, and umbrella while it poured down with rain. Thank goodness for the handicap parking sticker. He made it almost through the entire service but in the middle of Max Lucado preaching he let out a big burp. It was too funny!
When we got home Felt and I tried to feed him lunch which turned into a screaming fit that lasted 45 minutes. Only Elmo which we are trying to fade out calmed him down. Constipation was the real problem and has been since we have taken him off the GFCF diet. After a trip to the bathroom and an Elmo video we tried again while attempting Vital Stim with him. His swallowing and chewing have gotten worse and since we have 4 months to our GI aptmt I am desperate to get it better. Once again another fit. Every time I do vital stim with him it turns into a tantrum. ARG!!!! I kept on and held his hands while trying to feed him the nutritious meal I made him and we lasted 15 minutes on vital stim. Better than nothing I guess and there is always tommorrow but after listening to the screaming starting at 4 am I am worn out. I am frustrated and days like this I know that Rett Syndrome is attacking him and our family. I would have loved an Easter egg hunt, pictures at church with his cousin and maybe a trip to the park but it wasn't going to happen today. And I would have loved to see him enjoy his cousins birthday party yesterday. I remember back to last Easter when he screamed the entire time we hunted for eggs. Most days he is our happy boy but these days it has become really difficult for us and sad for him. I tried to take him to the zoo last week after preschool. It was immediately chaotic for him with all the elementary schools in town there. He did a lot of the retropulsion-swinging back and forth, but he did enjoy the birds and would stop wringing his hands to look at them when I called his attention. More and more I notice other kids and adults looking at him and staring. People are so insensitive and just don't understand and I guess they are curious too. A year ago most people would have looked at him as a two year old having a tantrum or doing something weird, whereas now people look at him and see that special needs boy. Whatever the case he is our angel and I am thankful everyday for him and the things that he teaches us. I would like to say the staring doesn't bother me but it does and hopefully I will adjust to it like I have with everything else. I look forward to the day when we are all in Heaven and I see him running and saying "Mom, I love you." I long for that day and days like today I am definitely homesick, which makes me think of the song by Mercy Me called Homesick. Please pray for us and I hope everyone has a Happy Easter.
Rett Syndrome. One year Post Surgery
3 months ago