Little Acts of Love

We were outside today and I had a good reminder of how happy little acts of love and kindness people make.  The kids were playing and we heard accordian music.  There was a man practicing his accordian up on the hill so we went and listened to him play.  Oliver was LOVING the music.  The man was carefully looking at Oliver with a concerned look.  When he realized Oliver was enjoying it, he came closer to him.  We started talking and we learned a little about him and he learned about Oliver.  We decided that Oli was a strong name.  He had a cousin named Oli who lived to the age of 100.  This man plays in a group and they wear bells on their legs and play English dance songs.  Before he left he put the bells on and demonstrated his dance.  Adina and her friend were giggling away and everybody was happy.  (Cora stood further back with her very serious look unsure of the whole situation.)  He didn't have to keep playing when we interrupted his quiet practice time, but he was a very kind man.  It is hard for people to see if Oliver is enjoying himself, but I know.  It was a very special moment.  Music is Oliver's favorite thing and this man was just there.  Little acts of love.

Oliver also got to go on a little hike today with me and the girls.  The chair is not easy to push up a gravel path, but we made it!  John is still patiently waiting for a call.  Oliver is doing well.  Early in the summer we were told that the medication Oliver uses to sleep in no longer being made.  John and I were ready to cry.  We are trying a new med and it is okay, but not as good.  Oliver went through withdrawal of course and had a rough week.  Adina gave herself a haircut, not a good one.  It was in her eyes so she just took care of it.  She had her dance recital and looked like a little beautiful little swan (or bull in a china cabinet).  Coraline is talking up a storm.  The first letter of the words truck, bucket, walking, and monkey are all replaced with an F.  It is something that we are excited for her to outgrow!  Phin Phin continues to be our little chunk, happy as can be.  He loves his siblings more than anything.  Happy 4th of July.

Cold ice cream!

                                        Looking for fish.

                                          My first haircut, kind of. 

                                      My pretty little swan waiting to dance.

                        Phin Phin happy as can be.  (Little John)

                                                              

                                 Open up! Give me ice cream!

                       Snuggle time with Grandma.

                               Walking in the woods.

                            Beautiful Cora with her serious look. 

                         Accordian Music.  He was such a kind man.

       Hiking time.  These two trails always remind me of my favorite poem by Robert Frost, The Road Not Taken.

                       Who says a kid in a chair can't do stuff!

Our last dose of Chloral Hydrate.  You will forever be missed wonderful sleep (and sleep meds).

               Phinneus and Great Uncle Doug. 

                   Cora and Grandpa Dave. 

Adina dancing at John's cousins wedding, dancing with her cousins.  Do you think she
was having fun?

              Phinneus showing off his abs!  My little stud muffin!

May

It has been a while since our last post which means life here has been uneventful, or totally crazy.  Adina graduated from preschool tonight, which means in a few short months Kindergarten will start!  She had her piano recital and the second we walked into the room and she saw all of the people she said she would not play.  I did what any mom would do in a crunch, BRIBERY!!  With a little whisper of "new Barbie" in the ear the show went on.  Oliver is doing well and turned four May first!  We didn't think we would get to three, what a stud.  We will have our bumps and anything could happen but we just live our lives and don't focus on what could happen.  Some nights when I am working with Oliver I sit and watch him in is drug induced sleep and am amazed at how perfect he is.  Only the luckiest of people can see that, few will figure it out.  He really is the most amazing person I will ever know.  Coraline is our little stinker who is almost two.  She can push Adina's buttons and turn on the fake cry like that.  She will give herself a time out for hitting Adina, strut out and hug and apologize, smile and whack her again.  She will make me go grey at some point.  Phinneus is our little chunky monkey, seven months old weighing in at 21 pounds!  His future might be football or sumo wrestling!  John graduates on Sunday.  Now we patiently wait for his first call.  We are all excited to find a place that we can call home for more than a year.  Until that happens John is taking over the stay at home mom role and I am bringing home the bacon!  Happy Summer!  Enjoy the pics.

My sweet Coraline

 

Adina at Graduation

This is what happens when you have a big sister!

Phinneus lookin pretty too!  Poor boys..

Trying hard to crawl

The girls watching the Heart of the Beast parade.

Oli hugs

Piano Recital

Our chunky boy.  His shirt appropriately says, "Judge me by my size do you?"  It's an 18 month shirt.

Brother time, looks like Oliver has a great secret.

Easter Sunday with Papa and G-ma.

Phinny with Great Uncle John Easter Sunday.

Great Aunt Gracia!

The kids love to hang out with Oliver.  His bed is where the kids sit most.  

Cora holds Oliver's leg down with hers so she doesn't get kicked.

We all went to Disability Day at the Capitol to show support. 

All of my kids wore their Public Policy Advocate stickers.

We were proud parents.

Adina was so proud of her brother.

Phinneus kissing (licking) Oliver's head.  I think Oli liked it?

Adina's piano recital.

Outside!

On a normal March 13th we would still be in our winter coats but today we were out in spring clothes! The kids loved being outside today, Oliver even went down the slide! Life has been busy but good. Oliver is doing really well with his normal bumps here and there. Phin had RSV and had a little stay in the hospital for two nights but is doing fine now. Adina is loving life and Coraline is our little stinker. I have been working out of the house again so updates have been few and far between. Oliver has some tests coming up and when/if we learn anything I will post. Happy Spring!!

Home is Good

Christmas and New Years is over and I have to say that I am glad! Due to the med shortage we had to keep Oli in the hospital until he was safely transitioned off of the "good stuff", on to the "it will have to work" stuff. The first few days were the worst for Oliver. We made it to Christmas Eve services at a lovely church right by Gillette. The nurse that was taking care of Oliver that day, who is a FANTASTIC nurse, kept me updated via text. People came and prepared meals at the Ronald McDonald house and we made it a perfect Christmas. Adina created a sign for Oliver's door that said, "Santa stop here!" She was very worried but Santa did stop. Gillette gave each of the kids amazing gifts and we brought some from home. Adina wanted to wait for all of the gifts until Oliver was home so we only did a few. We took Oliver home on a 24 hour pass (just enough time for Santa to come to our apartment with the rest of the gifts) to see how he would do and he needed a few more days at the hospital so New Years party also took place in the PICU. We did have a party! We made the best of it and made some silly memories too.

Adina is back at school (YAY!). She had to post a wish for the New Year at school. A lot of kids wished for toys or pets, the normal kid stuff. Adina wished for her brother to not have any more surgeries at hospitals. The other day she told me she always wishes for that on the wishing star but it just won't come true. It breaks my heart and sometimes I feel like she is missing out on just being a care free little girl. A few days ago Oliver was having a significant amount of pain. Adina sat and rubbed his legs and said, "don't cry buddy, sissy is here now, I will stay with you until it's better." Cora, feeling like she too should help, grabbed the thermometer and tried to take Oliver's temp. Last time I checked the eye ball is not the best place to take it. The girls love their Oliver. I guess this is just normal for us. Adina has no fear of the vent tubing or alarms. She just fixes it.

Hope you all had a very Merry Christmas! We are looking for nurses to fill some open shifts at our house so if you or someone you know is interested let us know! Needs to be RN, preferably some IV and vent/trach experience but we can train.


Brother time.


Santa came to Gillette. Cora clearly was not a fan.


Volunteers came and made Gingerbread houses with the kids.


Oliver in his chair having some play time.


Adina loved her Bitty Baby American Doll from Santa (Gillette). Thanks!! We were all amazed!


Merry Christmas!


Oliver liked this noise maker.


The kids just hanging out all together.


Adina helping Phin with his stocking. I guess baby wipes are exciting!


Phinneus..AKA...The Chunk!


Adina put cookies out a few days late but Santa still came. Santa is kind of a sucker for cookies!

Party Time


Cheese!


Lights out, glow sticks on! Oliver loved the lights, who says you can't have a party at the hospital.


Happy New Years!

A whole lotta action

A lot has happened in the last few months and I have not had a lot of time to post. About six weeks ago Oliver was in significant pain, we happened to be at Gillette for another appointment at the time when Oli had a wet diaper and we realized he was passing stones. A whole lotta stones, which would explain the high level of pain. They did an ultrasound and his bladder was full of sediment. So now we cath Oliver if he holds his potty too long. We were hoping the pain was resolved at this point but Oliver had some more going on. He had been passing some blood from his tummy which we have been managing from home but the amount kept increasing so Oliver went to the hospital for a quick five day tune up. They scoped him and found small erosions in his tummy. They figured it was a mechanical injury from his extreme movements. His G-tube was scratching his tummy causing it to bleed so they did a quick procedure and put in a different tube. This will cause less damage when he does have his crazy man action going on. So, now we are home preparing for Santa to come. Every time Adina is being a stinker I just have to say, "oh, I'm calling Santa!" Works every time! We will milk that one until she figures the whole Santa thing out! Do not worry, all of you who do not believe in teaching kids the magic of Santa. She knows the whole Jesus part of Christmas too but kids are only kids once.

Unfortunately, it looks as if we will have another hospital stay this week. Oliver has two meds that run through his IV continuously for pain and irritation. One of those meds is Versed. We were running low on our supply over the weekend, which rarely happens, because the pharmacy is so on top of things. I called and we learned that there is a nationwide shortage of that drug and all of the drugs in that family. It is a drug that cannot safely be stopped abruptly because of withdrawal and there are no other IV drugs to switch to because they are all out as well. Our safest option is to bring Oliver to Gillette to safely find an alternative where we have doctors that know Oliver well and can help quick without making many phone calls. It is just life and now we are thinking of ways to make Christmas just as special if Oliver is still in the hospital. We will be figuring this all out on Thursday as we have enough meds to get us through that day. We are so lucky to have such great resources for Oliver. His Gillette team is amazing and the hospice team have all become special to our family as well. The kids got to see Santa at Gillette and decorate Gingerbread houses. If you are ever questioning if there are genuinely nice people left in this world go and sit in the waiting room at Gillette. Everybody that works there is really a special kind of person. It is the one place that we can go where people see Oliver in his chair and say, "What a cute little boy!" Usually people see him and do the pity thing, which gets old. All kiddos are treated this way at Gillette, it is a safe place.
Kids are all doing well. Adina is on a LONG two week break from school. Cora has learned that hitting big sister is fun. She is also learning a lot about the time out corner. Phinneus is two months old and is one easy baby! Oliver is happy and has been playing on the floor with his siblings a lot!
Sorry for the mother load of posts. A lot has happened the last month. We hope you all have a peaceful Christmas, Hanukkah, Christmauka, Kwanzaa where ever you are.

Our many attempts to get all four kids to smile nice for Christmas pictures!






Adina loves to take pictures, usually of her foot. This is one of my favorite pics of Phinn!

Bummer

We had a good few months and managed to stay out of the hospital but we hit a bump or two. A month ago we realized Oliver was having pain when he went potty and then he actually passed some sediment. They tested it and realized Oliver had kidney stones, OUCH! That explains the pain. We had a few appointments and are managing that, at least we were managing all from home. Then Oliver had blood from his tummy that kept increasing. He is at Gillette PICU trying to figure this out. Of course we get there and it stops!! It is more frustrating than I can say! I will post more soon but wanted to let everybody know. Now the balancing act of staying with Oli and getting the other three back and forth!! Sorry for typos, didn't proof this one.