Friday, September 11, 2009

Where does the time go?

Again I am way behind in updating you on what has been going on in our lives.  I just can’t seem to find the time to complete a thought.  I am going to be lazy tonight and just write in list format some to the things/issues/stuff/happenings/goings on in the Marlett  house recently:

Sophie had her first day of preschool yesterday!  She has been anxiously awaiting this day, well I guess…all her life.  She was so excited to ride in Daddy’s car to preschool.  Drew used to drive Jack and Megan to preschool in morning and so the tradition continues(It works for me;).  Sophie ran out of the garage door yelling back to me, “Now Mom don’t be sad, you still have Lucy!  See ya!”

Megan and Jack both have new glasses that have  transitions lens, they love them.  They think they are so “cool”, I think they are slightly “dorky”.  They told me “all the kids at school like them, and they know what is cool Mom”.   My response to them,  “whatever?”  Oh my someone please stop them, they are growing up way too fast!

Jack came home from school on Wednesday with a VERY loose tooth, within seconds of him walking in the door it fell out.  Sophie saw all the blood in Jack’s mouth when he walked in the door and then saw the tooth fall out and said very emphatically that she was NOT EVER going to loose a tooth!

Here’s a BIG one, Lucy is taking independent steps! !!!!  Yes you read correctly, I started writing a post about this but haven’t finished it so I am going to tell you now just in case I don’t get to finishing that post anytime in the near future.  Words can not express how happy we are for our little one.  Mito is a disease of energy metabolism, some days are better than others, that’s just the nature of this disease.  All of her attempts at walking have really wore her out this week, but at the same time she does not want to sleep because she wants to practice her new skill.  Today all her walking  finally caught up with her, she slept most of the day.

After I posted about not having any doctor’s appointments this week or last I jinxed myself.  Last Thursday afternoon I ended up taking all the kids to our peds. office for round one of the flu vaccine thanks in part to their office calling me right away when the vaccines came in.  Lucy’s g-tube site was starting to look icky again on Thursday, how convenient we were already going to the peds office.   Fearing another infection we did a culture which indeed came back growing staff  and some other stuff again.  After the long holiday weekend her site progressively started to look worse.  Why do kids always seem to get sick over a weekend, or holiday, or a holiday weekend?   It looked oozy and yucky and was obviously painful.  On Tuesday when I went to lay her down for her nap her site started bleeding a lot!  With some quick thinking I called my neighbor who happens to be a nurse and asked if she would come and take a look.  In all honesty, I was probably a little more panicky sounding than that, it was a lot of blood.  She came with all three of her kids right away (amazing) and helped calm my nerves.  By the time she arrived the bleeding had subsided, she took a look  at her site and agreed that it did not look like normal granulation tissue, it looked unusual .  After talking with our ped. we decided that I should take Lucy to CHOP to see the GI stoma nurse practitioner.  On Wednesday morning I took Lucy back to CHOP  where the nurse practitioner looked at her site and thought it looked pretty unusual as well, sometimes I just wish someone would say, “oh, that’s so normal” when they  look at Lucy.  She talked with me for over an hour about g-tube sites and granulation tissue.  She was very compassionate and knowledgeable and I greatly appreciated all of her time and information, Lucy on the other hand did not.  She took silver nitrate to her site again and prescribed an antibiotic as well as trimcinolone cream to control the growth of the granulation tissue once the infection is gone.  She agreed that the sooner we can switch Lucy’s tube the better.  We are scheduled to see our GI in the next week or so, at that time we will discuss all of our options.

My sister came to visit over the weekend, we had fun staying up late and talking about “stuff”.  We did a lot of nothing and had a relaxing time doing it.  She watched the kids for us on Monday afternoon while Lucy took a nap.  Exactly twelve minutes after we left our driveway she called us saying Lucy was awake and that there was no way she was going into her room to get her.  Who knew someone so small could be so intimidating?  I told her to leave her in her crib as long as she was happy and to call me when she started getting upset.  Drew and I were just around the corner at our local Starbucks and could be home in a few minutes.   So there we sat trying to talk about everything while gulping our Starbucks and looking at the clock, not exactly what you would call a relaxing date but it was a date nonetheless.

We are looking forward to yet another weekend.  My grandparents are visiting us on their way back to Florida.  We are going to slow down and take the weekend to enjoy having them in our home, I just hope the rain stops tomorrow so that we can play outside.

I have fragments of posts that I have started over the past few weeks but have not had time to complete.    Hopefully you can look forward to reading a few of those in the the upcoming week or weeks.  I have so much I want to say but not enough time to write it down. 

2 comments:

Anne said...

I just caught up on your blog and am impressed with all you have going on. I'm so sorry to hear that Lucy has mito, it seems to be a disease that more and more families face. Congratulations on independent steps! Grace is still working on that but shows signs that she may get there soon.

I hope to be able to talk with you or get together with you soon. I pray for you and your family and would love to 'visit' with you. Enjoy your weekend!

ML said...

Lucy seems to be able to take safer steps then I considering my current situation from my scooter experiment....three anti-biotics later...lol. Hope you can keep your spirits up.

ML