My baby sleeps....

I sit here as Matthew is napping on the couch, and think about the past 3 days in just utter amazement at how Matthew has dealt with everything he has been through in the past 6 months since he has been with us, let alone his life before us.......he is just one unbelievable child.

Thursday was our most difficult day as he was in a terrible amount of pain. The surgeons had told us to give him Motrin and Tylenol and a medicine for bladder spasms.........well, obviously they have never had surgery in that area of their body to learn that those meds don't cut it! Poor Matthew wouldn't eat, drink, and he was grunting with every breath he took. Thankfully, we have an INCREDIBLE pediatrician and all it took was one email to her, and within minutes we had a prescription for pain medicine called in for him. An hour after the medicine was on board Matthew was playful and finally drank someting for the first time in over 16 hours!!!!! He FINALLY turned the corner late Thursday evening for which we were so thankful. Although, I certainly was not complaining about all of the moments that he just wanted Mommy to hold him :) Many melt my heart moments!!!

My Mom and brother came on Thursday and stayed until this afternoon, what a blessing and relief that was to have my Mom here. For my and Chris's support, and for Matthew. He just adores her and his Uncle Dave. Mom-Mom came with lots of goodies, dinners, breakfasts and of course a new car for Matthew since cars, trucks, and trains are his new love!!! She helped give me a break, helped get my house reorganized, washed and cleaned my hutch out, dusted all of my Willow Tree angels and made them look awesome, helped me with Matthew's diaper changes and sponge baths, and encouraged me to try to rest. Yesterday, Matthew took a nap in the afternoon and would only sleep in my arms or in my bed. So when I laid him down, I lay down too and slept for almost TWO hours in the afternoon. My Mom was so happy I did this....I couldn't tell you the last time I did that. but, I felt so much better after that because I was really starting to fell lousy yesterday, everything was kind of all adding up and I was getting pooped!

The most difficult part of the past few days have been Matthew's "episodes." They have tremendously increased since he was under anesthesia, and have been happening all throughout the days even at play time and at unexpected times.....they make me so sad, and have been harder to get him out of them. Chris and I are sure now that anesthesia is a huge trigger for them since this is the 5th anesthesia he's been under and things have gotten worse. We aren't going to have them make any changes on meds, etc. until the implant surgery. That is our next HUGE goal and we really NEED to get there without any complications. So, we are just going to try to get through these next few weeks, and go from there.

We were able to surprise my Mom today with a little early "First Grandparent's Day" celebration before she left today and she was SO happy. I think we really surprised her. Matthew gave her pink roses with 2 white ones in the middle - they were for him, CHarlie and Smokey (the grandkitties:) He had also filled her card with stickers and we helped him write her name. We also gave her Mom-Mom address labels that made her so happy! It was a fun little surprise for her!!! She was so sad when she left, and so am I. It's so nice to have her here. She's such a strong support for us, and for Matthew. She's good at organizing our crazy lives, and she's just an amazing Mom. Her strength since Dad died has been unbelieveable, and we are so lucky to have her in our lives. We miss you already Mom!!!!

Now, we are just going to relax tonight before the catheter comes out tomorrow. We have to be at the hospital at 9am to meet the urologist. I can't imagine it's going to be pleasant for Matthew so we have nothing planned tomorrow except for cuddle time with Mommy and Daddy afterwards! It's sure nice not having plans......but, our Penn State Nittany Lions have won today, and now the Virginia Tech Hokies will have to pull through tonight too! Matthew will have to change shirts soon - this is going to be so fun to introduce him to hist first college football season!!!