Thursday, April 16, 2009

quick update

I am sending this out to several list so if some of this doesn't pertain to you please overlook the part that doesn't. There is probably something in this email though that I needed to share with you or ask you. It was just easier to put it all in one email. Thanks! Slowly turning into more than a quick update.

First I have a praise. We got to see Abe today for a few minutes. Most days he is having so many seizures when he is awake that he is not there. I believe it's his body's way of protecting himself from what's going on. If not having seizures he is out of it from all the seizures or the rescue meds. Tonight we got to see him smile and he even squealed a little. It lasted about 10 minutes and then he was gone again. I am thankful that God gives me those glimpses. Those reminders that he is still in there.

Marlee Anne started reading! That is a HUGE praise because we have been struggling with this. She has been wanting to read for so long. The fact that her teacher has one of the worse Southern drawls there is doesn't help things. Yesterday I was in tears as she read her first book. Last night she read it to her daddy. We are so very proud of her. I love to see her face when she reads the words and it all clicks. Yesterday she said oh mom that makes me think of the playground. I don't know that she needed anything else to trigger her imagination but it is definitely opening new worlds for her. Thanks to those of you that have helped with reading and sight word materials.

I heard a loud nose in the therapy room and when I went to see Michala had pulled herself up on the bookshelf. She had her leg extended and was almost flat footed. She still has a hard time turning that foot completely straight. There was some books she wanted down and she was determined to get them. She did! And before my scrapbooking friends ask - NO I didn't get a picture!

Mary Elizabeth of course is the precious angel she always is. I am thankful for her laugh, beautiful smile, and lovely singing - even at 2 in the morning.

Monday night we got to go to Camp Sunshine Spa Sydell Night. Early in the day I had posted on my facebook status looking for a Reese Egg. Well imagine my surprise when I got back home and my sweet friend Casey and Jessica left me a 6 pack of eggs. I wouldn't even share with Mike tonight. Well I only have 2 left.

Yesterday we had a wonderful surprise from Rachel and Kylie. Kylie came in with a huge basket of eggs. She wanted to have an Easter egg hunt at our house. How very sweet was that. It was too windy for Abe and Mary Elizabeth so they stayed in. Rachel hid the eggs, then Kylie, Michala and Marlee Anne went out and found them. Such a great treat for us! Lots of fun.

Abe's gtube sight started bleeding yesterday. Could this be granulated tissue? It looks irritated some what but not sure why. Any thoughts?

Also his nose started bleeding. Rachel thinks possibly his cortef is too high. Could be. Also anyone have trouble with nose bleeds from Zyrtec or Keppra?

Today we got a call from Egleston asking when we were going to pay our $800 bill. WHAT? For some reason the insurance is not covering a bill. Please pray that this is just an oversite by the insurance company. Also please pray that he will be approved soon for Katie Beckett. This will help tremendously with the medical and especially the monthly medicine bills. We have just been setting up payments for the hospital which we will do but it would be a blessing if they call back and say oh it was just a mistake.

Abe is getting really long and soon we will have to get him a big boy carseat. We still need something that will recline especially during seizures and because of his lack of head control. If anyone has a suggestion on a brand that they have used please pass that info along.

OK one last praise & thanks for all those of you that have been praying for Brooke. Her results from her mammo were ok. We are thrilled!

I have a special prayer request for one of Abe's NICU nurses that is very special to us. She was having bad headaches and day before yesterday her husband took her to urgent care. The found out she has a brain tumor. Today they did surgery and we are still waiting to hear the results. Praying it's benign. Please lift Terri up in your prayers!

Thanks so very much to all of ya'll for all your prayers and continued support.

No comments: