Megan's First Day With The Nurse

It's a long post, so bear with me...

Well, we had a GREAT day with Megan’s nurse. It was pretty hectic just going through everything, showing her where everything is and going through Megan’s routine. Of course the thing we were most worried about was getting Megan to warm up to her. Megan didn’t mind when we were sitting around just going over her very long history and issues but as soon as she brought out the stethoscope, that was a whole other issue. However, it turned out to be MUCH better than I anticipated. I forced myself to go upstairs and do some cleaning so they could have some time together, without me having to leave the house, and when I looked down the stairs, Megan was sitting in her wheelchair and Tricia, her nurse, was sitting with her just talking to her. Megan wasn’t crying or fussing. She actually seemed pretty happy. It’s funny because for the first time I heard “Where’s momma?” (in her own little language of course) and that is something I have NEVER heard because I am always with her. But you know I did not stay away too long. Being upstairs was hard enough. I can actually say though, I felt a peace pretty much the whole day. Knowing there was someone with her that can handle her if she starts choking, vomiting or is her tube needs to be vented. She knows CPR, all about seizures, migraines, severe reflux, dysmotility, dumping syndrome, and she is very detailed in feeding machines and the J-tube. I know because she is a nurse she is supposed to know all of that but I didn’t know how much she would know about someone like Megan, being that she is not your typical child and things happen so fast with her. She understand everything about her. She was very knowledgeable about her issues and knows exactly what to look for should Megan start to show any signs of anything. What a weight lifted. Her doctors and us know that winter is not a good time for Megan so I feel a little more comfortable knowing there is someone her to help me watch her. She was so sweet with Megan. She took things very slow and said we could ease into them as to not upset her too much. We don’t want that kind of stress on her little body. Megan was still somewhat guarded and I expect that after everything she has been through. So when it came time to check her vitals every two hours, she pitched a bit of a fit. But by the end of the day Megan was the one holding the stethoscope and was listening to Tricia and herself. We are pretty sure that she will be a doctor and hey, maybe she will help find a cure for Mitochondrial disease! Anyways, we love Tricia. She took to Megan right away, which Jim pointed out that how could she not become attached. Now I am going to work on my control issue and letting someone else handle the medical side of Megan for a while. I never realized how much care Megan requires until I was explaining everything to her nurse. It makes me so very thankful to have the help. The really exciting thing was Megan actually gave her a kiss and a hug at the end of the day. That is a VERY big deal for those of you who know Megan.

Megan had her speech evaluation this past Friday and she will be starting therapy twice a week. She said Megan was doing well in some areas but does need a lot of help and she is afraid as she gets older that it will become much worse. Megan does A LOT of screaming when she wants something because she has no idea how to vocalize it all the time. She gets easily frustrated and that is stressful for her. So to take some stress off her body and makes things a bit easier, she is going to work on sign language and pictures with Megan. The only thing we didn’t want was for Megan to become lazy and not want to try to converse that a normal child, if she was able. But her speech therapist assured us that this would help her tremendously and she could tell that Megan is really struggling in that area and this would be of great benefit to her. She said that Megan would do extremely well with sign language and would more than likely catch on very quickly. Now the trick is getting Jim and I to grasp this. haha! But we will do whatever to make things easier for Megan and to communicate with her without her getting frustrated. We are both actually very excited.

I am taking my dad tomorrow to get his physical so we can get him into his assisted living home. Please pray that this all goes smoothly. We are hoping to possibly move him this weekend, next weekend at the latest. I am really trying to make this a positive thing for him and I know that this is for the best. He sees it for the most part but sometimes tries to talk me out of it. I know it will be hard for him and I know, even though how hard it has been, I am going to miss him. So I need this to happen as quickly as possible for the both of us. I know that I will feel so much better once he is there and I know he is being watched and taken care of.

Megan goes on Wednesday to get her new leg braces. We cannot wait for that! She has been walking on her tip toes or crawling and sometimes dragging her back end and not even crawling. She acts like she just gets too tired to even do anything. So she spends a lot of time in her wheelchair which is where they want her most of the time anyways. Especially with her collapsing into the door the other day. Too much risk for injury, you know?

Anyways, I have rambled enough and we have a VERY busy week this week so I need to get back to work. We love you guys so much! PRAISE THE LORD FOR THE RAIN WE RECEIVED TODAY! How awesome is that? Oh, check the photo gallery, I am going to post a photo of Megan playing doctor with her nurse and her stethoscope. It was so cute!!!!

Here is the website again, for those who didn't get a chance to read my previous blog: http://lcwhitlock.com/Megan/blog

It was a relief for me, not getting phone calls all day, telling me how bad it was going. As a matter of fact, I got two calls, and one wasn't even about Megan and the other was just Stacy telling me how great things were.

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JR