A York Peppermint Patty Day

I have a wonderful friend who truly taught me to appreciate a York Peppermint Patty. This friend is what I call, borrowing from Anne of Green Gables, "a kindred spirit". From the minute we met, our friendship was an easy one. She only lived in our neighborhood for a year or so, but it was a great time. She could make me laugh SO hard that I would be crying. Her favorite treat was a York Peppermint Patty and she taught me to enjoy each and every bite. She helped me through some very difficult times, and I hope that I was able to help her as well. Even though it has been 6 years since she has moved I still glance at her house as I drive by. It will always be her house. We still keep in touch but life is busy and so it is hard to get together much, but she will always be a dear, dear friend.

Today was one of those days when you would like to be able to just go back to bed and start fresh tomorrow. The details are unimportant except that I was exhausted, as usual, and things were just crazy and didn't seem to be going my way. While Alyssa was in ballet, I ran to the store to pick up a few groceries. As I was walking to the check-out line I decided that I needed a York Peppermint Patty. That would be the solution for my not-so-fabulous day. As I was waiting in line I remembered why I like a good YPP. Sure, I enjoy the cool, minty flavor as I savor each bite, but what I really enjoy is the thought of my good friend and the times that we spent enjoying a YPP together. My outlook on my day changed as this thought process occurred.

Thanks YPP and thanks Trenaisa for helping me savor the moment today. It would have been nice to sit and laugh with you, but the next best thing was to have your spirit there with me as I savored every last bite of peppermint patty in my car today! What a blessing it is to have good friends!

Sleep is overrated

Jared has decided that sleep is definitely over rated. It has been a rough week in regards to sleep. Jeff has been out of town, which is usually fine, but Jared had different ideas. I actually think that it is one of his medications fault. He was started on prednisone, a type of steroid, when his other anti-rejection med. was causing his white count to plummet. He is on a small dose that we have been giving him every other day, but I have discovered a pattern going on this week. Tuesday was a steroid day. He wouldn't nap so I put him to bed at 8 pm and he conked right out and I was thinking "Yeah! A good nights sleep"! Oh how wrong I was. He woke up at 9:30 pm, 2 am, 3 am, and 4 am. At 4 am he decided that he was done sleeping. At five I gave up and put him in front of a movie which wouldn't be so bad if he could handle watching alone for awhile. But, no, he needed me every five minutes until the other kids had to get up for school! I thought for sure that he would take a LOOOONG nap that day. Nope, 30 mins. was it!

He slept a little bit better on Wednesday night, but Thursday was once again a steroid day. He finally fell asleep at 10 pm, but woke up multiple times throughout the night and was up for the day at 5:00 am. This is when I thought to myself that this couldn't be coincidence. I don't think that he is even sleeping long enough or soundly enough to get into a deep sleep. Wow are we tired! So I called the transplant clinic and plead for some help. We are going to try giving him a smaller dose every day instead of a larger one every other day and see if that will help. Oh how I hope that it will help! There's nothing like a toddler with insomnia! :)

This has been one of the challenges of having a chronically sick child. You just never know what is causing certain problems. Before his transplant he was just so sick and throwing up so much that I didn't feel like I could let him cry it out. Plus, that never worked for my other kids. After his transplant he has had moments of sleeping well, but a lot of not sleeping well and so we did the sleep study that told us that he was "mildly abnormal" whatever that means. So, we moved him to a big boy bed and he was doing better for a while but it has all come crashing down the last few weeks. So, how much of this problem is behavioral and how much is caused by his medical issues and medications? That is the golden question! But a 3 year old only sleeping 7 hours of interrupted sleep is not normal! He doesn't sleep even if I am next to him! I'm going to blame it one the medication. Hopefully we'll get something figured out before both of us go crazy from sleep deprivation!

Look Who's Walking!!!!

Jared is doing AWESOME walking with his walker! He is actually figuring out that it is fun! He was having so much fun walking around Tyler and Alyssa tonight that I just had to record a little bit. He just may walk yet! Hooray for Jared! You are one AMAZING kid!

Jared Updates

I still haven't gotten all of Christmas undated yet, but I will, I promise! I can definitely tell that it is January! Wow, am I unmotivated to do anything! Can I just sleep through January please? I just had to update on Jared's latest goings on. He is doing really well right now! He has been happy and healthy and is getting louder by the day!

He had his MRI's done on December 23. They did a brain and a lower spinal MRI to see if there was something there that could explain his developmental delays. He was great and the nurse got his IV in first try! I told her that she is hired to be his permanent IV placer! I was soooo grateful for that little tender mercy. He slept well through the tests and recovered well, except for being a little bit grumpy for a day. And, the best news is that they both looked normal! So now we will do some more genetic testing to see if there is anything there that could explain things.

We do have another little problem that needs to be addressed now. Back in September, when he was being assessed by the school district to see if he qualified for special needs services, they did a tympanogram to test his hearing. He didn't do so well and the audiologist said that there could be an infection or fluid behind his ear drums. So I took him to his pediatrician and he confirmed that there was indeed fluid back there. He said that it is common and usually disappears on its own but that we would do a repeat tympanogram in a couple of months. Well, Jared had his repeat test done yesterday and nothing has changed. Something is still not quite right back there. The audiologist then did the newborn hearing test on him to see how his hearing is being affected. His right ear passed, but his left ear didn't. So, he is not hearing too well on his left side right now which could explain why he his speech is so delayed. So, now we need to get him into an ENT to see what they think and they might need to put tubes in to drain the fluid. Once we get the fluid cleared up, then we can retest that left ear to see if that was the problem. Hopefully that is the problem because otherwise we could be looking at some permanent hearing loss on that left side. My sweet Jared! He just likes to keep us hopping! So we will be headed to our 11th or 12th specialist? I've lost count!

On the kidney front, everything is looking good right now. We even got to skip a week of labs! Yeah! Hopefully his ANC will stay up for good now!

Christmas Days

Wow did December go by quickly! I can't believe that it has come and gone already. It was a wonderful holiday season. Jared was healthy and happy, Tyler was our happy Tyler again, and Alyssa was, well, Alyssa was her usual happy, bubbly, crazy, sweet, little self! I am so behind in keeping things updated so I guess that I will go in chronological order!

The Nutcracker

This turned out to be a lot more work than I had anticipated, but the kids had a great time performing. Tyler performed in all nine performances. Luckily has good friend Matt was able to do it with him. I have no doubt that it would have ended up being more than Tyler could handle if he hadn't had Matt with him. Hooray for good friends, and for their dear moms who let me talk them into this! He and Matt were sooo funny when we had to put their stage make-up on. I got a good laugh over this every time I put it on them. They did a fantastic job and took their roles very seriously.

Alyssa had a fabulous time being a Cookie! She practiced her little dance at home all of the time and was so excited when she was able to actually be on the big stage. She looked to pretty all decked out in her make-up and bun. She did a beautiful job and it was so much fun watching her dance!

We had a big group of family members in the audience to watch them on closing night. Jeff and I went, as well as Jeff's parents, his niece, Katie, his sister in law, Diane and four of her children, my mom and my sister Rachel and her daughter Katie. We met at my parents house for dinner before the performance and it was so nice to see so many people we love, coming to support Tyler and Alyssa. Tyler and Alyssa thought that it was pretty cool to have so many people coming to watch them! It was a wonderful evening!

The pictures are a little rough. Parents weren't allowed back stage so Tyler took these! :)

Hopekids Christmas Party

We LOVE Hopekids! They had a wonderful Christmas party that we were able to attend. We were first able to see the movie, Bolt. The kids loved the movie and it was fun to see it in 3D! Jared wouldn't wear the glasses, but it didn't seem to bother him too much. After the movie, we all went next door to the Mayan Restaurant for the rest of the party. They gave all of the kids cute Christmas, Hopekids shirts that said on the back, "Got HOHOHope?" They fed us lunch and then Santa came! The amazing part of this was that someone had gone shopping and had bought a personalized gift for each Hopekid. They had gone to the Hopekids website and read each child's profile and picked out a gift just for them. It was amazing! Jared was so excited to open his present from Santa. It was a helicopter! Wow, did his face light up when he saw that! It was perfect! They also had little treat bags for all of the siblings. There are so many amazing, wonderful, generous people in the world! It was a wonderful party!

Tyler had a Nutcracker matinee performance so he and Jeff had to leave early. That is why they aren't in any of the pictures!

Well, I am out of time for tonight, so I will have to continue this story tomorrow!

Jared Loves the Snow!

I have so much to write about Christmas but it will take more time than I have right now. I had to post this though before I forget it!

It has snowed all day and last night and so I bundled Jared up in all of his snow gear and took him outside hoping that I could get a little shoveling done. He LOVED it! He followed me around everywhere I went and then ended up in the middle of the cul-de-sac face down on his stomach looking at the slush! (We have a very quiet cul-de-sac and I was there with him :)). I grabbed the cameras and got him on video but he moved before I could get a snap shot of him. Who cares if he can't walk! Bum scooting gets him where he needs to go! I found a sled that has a back and a buckle on it that works great for him, so we then went on a long walk through the snow. It was a beautiful, snowy, quiet day and Jared and I had a great time. It is so wonderful to see him enjoying new things! He is so much fun to watch as he learns and explores in his own unique, "Jared" way.