Saturday, June 30, 2012

Visiting Hospital Friends

Today started out pretty rough. I woke up and went to the bathroom and then heard a very angry Dawson say "MOMMY! Come get me down!". I have never heard him that upset in the morning. I told him I was in the bathroom and will come soon. He doesn't have a ladder on his bunk bed for Gabriel safety issues, but he often just climbs down himself anyway. I came out to find him stomping down the hallway, yelling at me. I told him to calm down and talk to me. His head dropped and he said "Dawson is sad". Then he got that look back on his face again and said "No, Dawson is ANGRY! And sad."  He came back to my bed and we cuddled. I asked him if he had a dream and he said yes. He calmed right down when we cuddled and he said "thank you mommy, I love you". He's so sweet!

I had plans to go to a friend's house, an hour away and help her take her little guy out and about. I gave Dawson a couple hours of time to himself and then showed him the pics from our last visit there and asked him if he wants to go there or stay home. He chose to go and insisted on it each time I asked, so we went and he had no issues the entire day! It's always hard to tell, some days he won't have any defining moment and he'll have a rough day, but then mornings like these happen but he is ok after some reassurance.

I started driving my car again, it's so weird not having the van, but the air conditioning is nice to have, which is only in the car. It's so low and it's killing my back to reach in and buckle them. Another reminder that I need to prioritize myself and get back there! It's been over a month and she said I'm supposed to go weekly. The joys of sleeping on a hospital bed for a year.

Gabriel found this squishy teether, which Tasha ended up giving him. He's been carrying around ever since! We ended up just staying in, the weather was too warm for Rilee to be out in, but we wanted to visit them anyway.
 They are so adorable.
 Rilee had a liver transplant before he was even 6 months old. You can read up on his progress here.
Both little guys are teething like crazy! Poor things. Rilee got 4 teeth in recently and a couple are barely through and Gabriel did the same this week!
 Dawson decided to hold him. He loved helping out with all his medical stuff. He jumped in and did all the jobs he did for Tyler as well. Pushing the blood pressure machine button, telling him good job and sitting next to him sometimes. He heard that machine and remembered just what it was and hurried over to help.
 Dawson was taking pics for a while

 They were getting a bouncy ride on my legs

 Gabriel was a bit bummed. I wouldn't let him steal the pacifier or pull at his trach or g-tube either. He listened very well though and left his stuff alone when I told him no.
 Having fun playing. Gabriel was laying there being crabby, so I was having Rilee punce on him. They'd both smile so big and then Rilee would just get comfy and cuddle up to his buddy. Gabriel was just looking at that paci. Goofy kid, he's never taken one before!
 Rilee's big brother (who was up north today) has an electric four wheeler. We tried this at RMH last summer and it was a bit scary. His steering skills were not there yet. Since then he's been riding bike and is doing much better. He did great listening to directions, went slow when we had Gabriel on and stopped when a car was coming. It's a housing development, so they don't get many cars back there thankfully.

I forgot to mention on my last post, I went back to Children's hospital again on wednesday. I helped a friend do some filming (that's all I'm allowed to say about it). I met them in the clinic and we went up to the Oncology floor. I saw Tyler's primary nurse in the clinic. She was shocked to see me and gave me a hug. She's so sweet! When we went up to the Onc floor I saw his primary Oncologist! I haven't seen either of them since the day Tyler died. They both came over to the other hospital to visit us, even though they weren't on his case anymore. He saw me and came over to give me a hug as well. These people become like family after a while, especially for the families like us who stayed inpatient more than the average families. Whoever thought I'd actually miss these people. It's so weird. I walk up there and it's just like home. I was just glad that being there didn't mean more torturous treatments. I saw a bunch of staff and a couple families I knew as well. We were there about 2 hours and then we went to the cafeteria for lunch. Oddly enough being in the cafeteria was weirder than the Oncology floor! It's the most unexpected things that will get me. It was great spending time with their family. Their 4 year old, Dallin, has Leukemia and is in maintenance now and is doing great. He's such a cutie too!

Friday, June 29, 2012

New Experiences

We've been enjoying our summer as much as possible. We missed summer last year, so we didn't get to experience many fun things, like splash pads, parks and pools. We are making the most of it! After therapy each day (9-5), we usually do something fun. We've done our friend's pool, she lives close. We also have a splash pad fairly close also, so we've done that twice.

It's the end of the local Mom's Club fiscal year, so they gave each mom a unique award. This was mine. They've been so supportive of us, it's a great group to be in! This coming year (starting in July) I will be filling the position I was nominated for, as AVP of the group. I'll mostly be coordinating community service projects, collecting donations, talking to different places and finding out the needs of our community. I also got nominated for the same position at MOPS! I hadn't even requested it, I'd asked for something else, but they thought this was right up my alley. Which it is. :)
 Our end of year party host made these little nest charms for necklaces to give out as party favors. I thought they were pretty cute!
For anyone wanting a ball pit, this is what happens after 3 days. I knew this, and still proceeded. That 3 days is so worth it, I just store the balls in the closet and take them out now and then and it's like new again!
 Dawson has been so sweet! He shares food and toys with Gabriel, needing a few prompts now and then, but he really is doing amazing!
 We put the pool to use on the balcony. Dawson and his friend Rain had lots of fun. He shared so well and there were no issues!
 HopeKids had an event on Lake Minnetonka last week. It was so much fun and I saw some families I hadn't seen in a while too! Dawson was excited to see train tracks up close. We had to stand by the tracks to wait in line for the boats, so I let him walk on the tracks. He listened so well and stayed close. I think back to how he was with waiting in lines before and I'm just so proud! He stood in that line and waited so patiently. He asked me twice what we were doing, he sat down on the dock when he got bored and just waited. Amazing!
 Gabriel was not pleased about the life vest, but he eventually had some fun. He started out just sitting back, not sure if he could move with that thing on or not. Which was fine by me! ;)
 Dawson wasn't so sure at first either. It was his first time on a boat. He was excited, but a bit nervous when we started moving.
 Gabriel discovered the water splashing up from the propellers and was bummed that I wouldn't let him splash in the water.
 The captain's wife was so nice, she took a couple pics of us all and also accompanied us on the island too.
 He eventually was content just watching it
Gabriel by the lake
 She took a pic of us on the island too! Dawson was playing in the sand.
 He was much more comfy on the way back. He was excited for the ride.
 Gabriel got these glasses as a prize, they had several games. So Dawson used them on the way back to the dock.
 Gabriel slept the entire ride back home. He was close to a nap anyway and the rocking boat had him asleep before we even started moving.
 Gorgeous day! It was a bittersweet day, being June 22nd, Tyler's diagnosis day. It's been 3 years and I really never thought I'd be spending the day without him. I had plans for this summer, including a Make a Wish trip. So many other kids are taking their trips and it's so painful hearing about them all. Some days it all feels like a horrible dream. I hear this is normal too. I have so many memories but it sometimes feels like it was all a dream. People also say the 2nd year is harder than the first. I can't imagine that, but everyone I've talked to agrees. As we get further out, it's actually getting more painful. Dan is experiencing the same thing. We've had some rough few weeks.
 Thursday I took these pictures at Riverside Park. I've gone there to take pics before, it's one of my favorite spots for it.
 The stone wall keeps them in a relatively dependable path, so I spend less time chasing them down and more time focusing on angles and smiles.
 They have a bigger platform at the end of the wall, so I sit them both on that.
 Gabriel thought the wall was neat, though he wouldn't walk on it thankfully!

 Look, the river!

 The many faces of Dawson. He follows directions so well now! I told him to smile and I got this.

 Another forced smile! We get lots of these, they can be so funny.
 I was telling him to say different things. I believe we were talking about purple monkeys.
 Being silly and loosening up always gets the good ones, eventually. :)

 Gabriel has such serious faces sometimes!
 So curious

 I was so excited that they are finally able to do this!

 That is adorable. Too bad the light was goofy because of the wall, but they wouldn't re-do it again later. Gabriel was done cooperating. :)
 I brought the tripod, Dawson loves doing the camera on the timer. It waits 10 seconds and then does 3 pictures, and it beeps during the 10 seconds. He waits with such anticipation, it's easy getting good pics of Dawson this way!
 Gabriel just wanted to look at me though

 So concentrated

 First splash pad! He was not willing to go near the water at first, but he warmed up to it eventually. He was soaked by the end. I hadn't bothered with his suit since he wasn't interested, so he ended up getting his clothes wet and going home in his suit. A bit backwards, but oh well!
 Dawson, who was terrified of them for 4 years, is finally very excited and ran right in! He even gets his face wet and doesn't run to me for a towel.
 Spagetti Os!
 My friend dropped 4 of her kids off today so she could get some things done. Gabriel was so excited to have playmates!
 We did the splash pad again today and actually changed Gabriel into his suit. Of course this time he wouldn't touch the water! Go figure.
 Dawson had a blast, he loves the water shooters
Gabriel had his 15 month appointment on the 28th. He is 24 pounds, 11 ounces and 31 inches tall. His red blood cells are still too small and now his white blood cells are slightly low. Dr decided to do labs in 1 month instead of every 3 months like we'd been doing. It's been pretty stressful, I emailed Tyler's Oncologist about it and he's going to look at his lab sheets and see if there's anything going on that he can tell.

We had another 6 week ITP meeting for Dawson. He passed 3 more of his goals and they added new ones. He's doing great! He is staying by me in public, sharing food and toys with Gabriel and kids he knows, asking for things in full sentences, following 3 step directions, and many things he wasn't able to do several months ago. His improvements are coming along so fast, it's amazing!