Birthday Month

 Junior had a very nice birthday back on the 10th but with the smokey air causing issues we had to take things a little at a time.  So his birthday was spread out over several days.  He loved chatting on the phone and video chat with family/friends, opening his many cards, as well as gifts.  It was a few days after his birthday before his cake got decorated but he didn't mind and was so excited to get to decorate it himself. 

Birthdays must start with Dutch Brothers and Junior chose a "Palm Beach"(peach pomegranate iced tea).

His nurse brought him a very special baking set which he thinks is super cool.

She also brought him a bunch of mixes to bake so he can't wait to get baking.

He loved opening all his gifts.

Abigail delivered this cool Grinch guy and Junior was snoozing so Yonder posed for a pic with it.

Yonder saying happy Birthday to his favorite human.

The weekend after his birthday Junior decorated his cake.  As  you can see he went with a space cake and it turned out cute.

Opening the rest of his gifts and cards. 

Yonder loves to help with the unwrapping of gifts.

Thank you to everyone who sent cards.  You made this guys week.

Aunty Mellisa gave Junior a Grinch room makeover for his birthday and he loved it.  With it being such a strange year we decided why not go a little crazy and let him have a Christmas room for a few months instead of Just for December(the rest of the house isn't going Christmas until after Thanksgiving).  It was so cute and Mellisa and her helper elf Abigail did a great job. 

Seeing his room/tree for the first time. 

The smoke lasting so long made for many issues and earlier this week we visited his doctor.  He is very tight(lungs) so it was time for a round of prednisone.  Hard because though he absolutely needs the meds they then cause their own issues and send him into AD storming episodes.  So it is keeping life interesting around here.  Please keep him in your prayers.  

Birthday Time

 Happy Birthday to this amazing guy.  Can't believe he will be 22 tomorrow.  Between Covid and all the smoke it will be a quiet day at home.  He is looking forward to video chatting with family to open gifts and making a cake.  He also is very excited to open the many cards that have arrived for him, this guy loves getting mail.  

When he was small doctors said he would never see this day, they also said he would be in a vegetative state and gave us a long list of things he couldn't do.  I would love to have a visit with some of those doctors now.  I wish they could see the young man who loves life, strives to get the most out of each day and who never takes no for an answer.  A doctor says he can't and he says watch me.  He does have big struggles and his body limits what he can physically do nothing stops him from finding ways to do things the "Junior way".  The young man who would be in a "vegetative state" can read, do math, problem solve in very creative ways, and communicate quite well.  He even has his own fb page where he uses his communication device to share about he and Yonder's adventures.  He has no problem getting his point across and has an amazing sense of humor.  I joke that he is a pro at non verbal sarcasm. 

 He loves action/scary movies along with comedy and classic tv, books(both mystery and classics), music(beach boys are his favorite), games, shopping, any outdoor adventure, and hanging out with family/friends.  For the past couple years he was obsessed with all things space or sharks but recently that has shifted to baking.  He will watch cooking competitions for hours and then wants to do his own baking. As soon as he finishes baking something he wants me to message his teacher to come get some of whatever he made, he just loves sharing what he makes.  

Health wise this year has been interesting.  Covid has meant staying home with no shopping trips or our regular summer time outings.  We have been to the park many, many times but now with all the fires even going outside the house is not an option.  His overall health is stable though there is still never a dull moment.  I am frequently reminded of how grateful we are for his trach. Our biggest success/miracle was pulling his GJ tube and changing to a regular G tube.  Another thing that was "never possible" has happened and for almost a year Junior has had 100% of all food and medications given via G tube.  Amazingly his AD fevers which were so frequent have disappeared completely this year(since the only change was him not getting a flu shot his doc suspects that because of his immune issues the flu shot causes an over reaction of his immune system so in his specific case it causes more harm than good).  The past couple weeks have been tough with all the smoke. Even with the air purifiers and staying in it still causes issues with his asthma and allergies.  He is low energy and just not feeling great but at this point has not needed extra oxygen and remains stable.  Without the trach a situation like this would very likely mean a hospital stay so we are so blessed.  

Yonder continues to be such a huge blessing.  His constant companion as well as his hands and often his voice.  

I am so blessed to have the privilege of  raising and caring for this amazing young man and can't wait to see what the coming year holds.  Keep sharing your joy and giant smiles Junior. 

Catching Up

Over 2 weeks since my last post.  Junior is doing okay but we have had lots of smoke which cause trouble with his airway/lung issues.  Very few walks and no outings which he definitely misses.  We have had some decent days but many days the smoke has been thick and there is ash in the air.  None of the fires are close enough for us to be in direct danger but they are definitely causing issues.  We are praying for all those affected by these devastating fires.  

How Junior felt about the smoke

 

A smile during his show

He continues to be just a bit obsessed with baking.   Sunday I put on a movie for him and he told me no and wanted his ipad. 

He preferred baking to his movie.  I didn't have cake stuff so he ended up making cranberry orange muffins. 

Another day he made caramel turtle brownies

He also painted his thankful pumpkin this week.  This is a tradition we have been doing for about 10 years now.  Between Halloween and Thanksgiving he adds something to the pumpkin each day that he is thankful for.  Considering how our world is at the moment we decided to start his pumpkin very early this year.  Perfect to remind us of all the things we have to be grateful for.  

He was very pleased to add a set of holiday masks to his collection.  

Junior had a doctors appointment this week which needed to be in office so we headed to Sacramento on Thursday.  A very long day for Junior but he did great and all went well, of course we stopped for Dr Pepper on the way home.  He was seeing a hematologist for the first time because of some low iron levels.  Thankfully we now have a plan and will not need to add a new doctor to the specialist list as his issues aren't severe and can be handled by his primary care.  

Hard to believe Junior's birthday is this coming week.  On Friday I asked him what he wanted for his birthday and was told "make cake".  I told him okay I will make you a cake and was told "no make cake".  I told him oh you want to make your birthday cake and got a big yes and smile.  He wants to make a space cake so I picked up cake, chocolate and vanilla frosting, star sprinkles and some galaxy chocolate chips.  He can't wait to make his own cake.  He is unhappy about being unable to have a party.  We had planned to have a small, socially distanced party at the park but the smoke in the air makes that impossible.  Thankfully he has many amazing friends who have been sending cards and he is very excited to open them all on his birthday.