T-Rex World,and an Update

Our local fairgrounds has a traveling dinosaur exhibit going on this weekend so we decided on a little last minute outing to check it out.
After the initial sensory overload Junior had a great time and really enjoyed checking out all the dinos.  Each of them were life size and moved as well as making noise(very loud noise).
There was a second exhibit area with a dinosaur bone dig, bounce house, games, rides, etc. but he was totally uninterested in that part and after a quick walk through we headed back to the dinosaurs(he clearly preferred the roaring dinos to the screeching children).
A few pics and videos from our day.

The big T-Rex was his favorite. 

 

 

 

 

 

Junior and Abigail being goofy with the T-Rex.

A quick Mellisa update: They got the final diagnosis of NeuroSarcoidosis and she started oral steroids this week.  This coming Monday she will be starting very high dose IV steroids and the immune suppressant medication. The hope is to get the pain in control and shrink the growths which will hopefully help with the mobility and strength issues.  Please keep her in your prayers, steroids can be very hard on the system.

Junior is recovered from being sick and though he is dealing with some allergies and asthma he is otherwise doing well.  A seizure this week but he is recovered and it was much more mild then usual, amazing that we have moved from averaging a seizure every 4 weeks to one about every 4 months. He is a goofy guy this evening and keeps trying to roar at me like the dinos and then bursts into laughter.  Makes me so happy to know he had fun on our outing.  He of course also had to call grandma and tell her all about it, he was trying his very best to roar for her as well.   

Update Time

Wow, I am way behind on updating.  Junior is currently not feeling well and my sis(Mellisa) is recovering from her biopsy.

Junior has been doing really well but started sleeping a bit more then usual this week and Tuesday night started running a fever.  Thankfully we already had a pulmo appointment on Wednesday so she was able to check him out and get him started on a round of antibiotics.  He should start feeling better in another day or two and in the mean time he is relaxing and watching his shows while having extra treatments and naps.
Even not feeling well he was smiling last night after a little nap.
 
On Tuesday miss Dela stopped by and Junior was so pleased to see her.

Monday relaxing with his solar system, star wars toys and of course I Love Lucy.


  Goofy guy decided he was cold but didn't want a shirt just the sleeves.

A little arts and crafts time over the weekend.

 

 Talking on the phone to grandma.  

 Now for a Mellisa update.  On Tuesday she had her biopsy so they can get a final diagnosis.  They did an incision on her upper neck/throat area so they could get a portion of one of the growths down in her chest(they are also in her lungs).  She is recovering well though dealing with some extra pain from the procedure.

Please keep them both in your prayers.

Also praying hard that Junior being sick does not cause seizures, he is doing so amazing and tomorrow gets us to 7 months with just 1 seizure.

**Updated Sunday -  Junior passed the 7 months with no seizure monster visits even with fevers and illness.  So blessed and thankful.  He is recovering from his bug and I managed to pick something up at his appointment so had a couple days of fevers and aches.  Fun times but both of us are now on the mend.  Spending Sunday resting and recovering which for Junior has included a Scooby-Doo marathon of all the movies(the ones that are not animated) followed by a Walker marathon.  Mellisa is home for the weekend and though Junior wasn't happy he was a bit more prepared this time so didn't go into complete meltdown when she left(he was repeatedly told she would be well taken care of even at her house and would be back soon).

Our Busy Week

Things are still pretty crazy around here but Junior is doing great and is his smiley energetic self.
My mom left early this morning to fly home which was really hard and we were all so sad to see her leave.  Junior was upset but after being told that grandma really needed to go see papa and uncle Andrew for a little while but would be back very soon he was okay.  She called and talked to him during her layover between flights which really helped.  So thankful she was able to be here for so long and blessed by all the help especially with the paper work side of things.  My mom is amazing and we are truly blessed.

An update on my sister.  Many, many tests later and the doctors are fairly certain they finally have a diagnosis.  They won't be certain until a endo-bronchoscopy and biopsy are done, and she is seeing a vascular surgeon on Wednesday to get it scheduled.  The diagnosis they are fairly certain she is dealing with is called Neurosarcoidosis.  It is an inflammatory auto-immune disease that causes granulomas(growths) to form in various organs and parts of the body.  A chest ct showed these growths in her lungs(in regular Sarcoidosis the lungs are the most common place for the growths) and the specialist said in Neurosarcoidosis these growths are also in many other areas and affect the nervous system and brain. They are the cause of the lesion on her brain stem affecting her balance and strength.  This is a long term disease with no real known cause or cure.  Once they do confirm the diagnosis she will go inpatient for a round of high dose steroids to try to get the inflammation under control then will stay on an immune-suppressant drug to try to control it(in this disease the immune system is attacking itself).  Please continue to keep her in your prayers as she faces this life altering diagnosis.  

Junior update:  He continues to do really well.  A few weeks ago he rocked right past 6 months with just one seizure.  I had counted that by counting weeks(4 weeks = month) but this past week he also passed 6 months with just one seizure even counting by months(october, november, december, etc).  We are so thankful and amazed at this fabulous milestone.  As I mentioned previously his communication has exploded as the seizures stay away.  He loves to joke and mess with everyone and especially make us all laugh.  He doesn't miss anything and don't even think of trying to sneak something passed him. 

Now for a few pictures, of course we can't have a post without pictures, lol.

Rainy day nap

Stories on his ipad(he was hot and did not want a shirt)

Mellisa tried Junior's weighted blanket and discovered it helped quite a bit with her pain, especially the pain in her spine.  Mom and I used some team effort and got this one made for her this past week. I love the fabric though Junior was not impressed and was sure hers should be camouflage like his. 
 

This picture was from 3 years ago today.  Some horrible seizures had landed us in the ER where things got pretty tense and scary.  The Pulmonologist as well as other trach parents had told us we will know when it is time to move forward and this was that moment.  The moment we knew without a doubt it was time to move forward to getting his trach placed.  

 3 years later and I have no doubts or regrets, I know that this was the right move for my sweet boy.
His health has improved in such a huge way and not one hospital stay since being trached.  Without the battle to breathe he was able to grow and his seizures slowed down.  It was very hard to have him lose his voice but this kid quickly found ways to compensate for that and also has a speaking valve we can use once in awhile to still here that sweet voice.  If he needs or wants something and needs to get my attention he will smack his lips.  Let me tell you this kid can smack his lips quite well and will get louder and louder until he gets the attention he wants(he is also very skilled at popping his vent off as well triggering his oxygen alarm). At times he can vocalize even without his valve and still mouths things and I can usually tell from that what he is requesting.  He is very good at mouthing "a-ah"(grandma) and "a-A"(Abigail) as well as things like "out", "on", "O"(no), etc.  Along with his ipad, yes/no eye gaze, and facial expression,  it is rare that he has trouble getting his point across.  Crazy to think it has been 3 years since that scary event and 2 1/2 years since his trach was placed.  God is good and we are so blessed by this amazing boy and his huge smiles.   Life is a gift. 

Thank you to all those who have been keeping my sister and family in your prayers.  We are still working out the specifics to get things in place for her.  Please specifically pray that things can be worked out for her medical needs such as medi-cal(medicaid in other states), living arrangements(looks like we have this worked out for now), and the various other things that need to fall into place during this time. 

Update

Another very busy week has gone by and though I updated on fb I have not updated here regarding my sister's big specialist appointment.
The appointment went well and the doctor was very thorough.  After her examination she determined there were some other possible things that needed to be ruled out before making an actual diagnosis.  A lesion was discovered on her brain stem which is causing the balance and mobility issues.  Many more tests were ordered and we are now working on getting them all done.
Being out for the various appointments is very hard on Mellisa and she is having a great deal of intense pain.
We have discovered that Junior's weighted blanket helps with her spinal pain and has allowed her to at least get some sleep.  On this weeks schedule is finding a moment to run out for materials to make one for her.

Now a Junior update:  He is doing great, an asthma issue here and there but nothing major.  The seizure monster continues to stay away and Junior seems to have decided that his job at the moment is to keep everyone laughing.  With all that is going on it is a huge blessing to have him sharing his smiles, giggles, and joy.  A big storm is moving in today so Junior isn't wanting to do much but is still his happy self and has been having a movie day. 

 Chilling with his new headphones on and listening to a book on his ipad.  We finally found headphones he will wear, these are cozy phones and the earphone part is inside the fleece band. 

 As we see Mellisa's pain and balance issues continue(and in some areas progress)we realized we needed to find her a wheelchair to use while out.  We were discussing this when this sweet smiling face reminded me that it is all about your perspective.  Where this need was hard for us to face Junior sees it from a totally different perspective.  Wheels are just a part of life, no different then legs, they are mobility, independence, and totally cool.  When he heard talk of us finding wheels for Mellisa he was very excited, to him she would now have cool wheels like him to help her get around.  

After a little searching it was suggested that we check with Scottish Rite for a transport chair.  They had just the perfect chair which folds up easily to fit in the trunk and is light weight.

My amazing mom has decided to stay another week to help with getting everything in place for Mellisa.  Nothing moves fast and getting her set up with the programs she needs and getting paper work taken care of and the various other things take a lot of time.  Thankfully we are making progress and things are beginning to fall into place.
Please continue to keep Mellisa in your prayers. 

Our Week

It has been another busy week but all is well with Junior aside from a few asthma bumps from all the storms. 
We broke a huge record this past week one which I never imagined even coming close to.  Junior has had just one seizure in the past 6 months. A total miracle in our world and we are so thankful, God is good.  We are thankful for every seizure free moment and pray that there are many more to come. 

Yesterday grandma was out hunting for boxes and Mellisa was napping so Junior picked out a movie to watch while I got some house cleaning done.  In the pic he had caught me trying to sneak a picture and his serious movie face turned into giggles(he had chosen Olympus Has Fallen then followed with London Has Fallen, boy loves his action movies).

 

Please continue the prayers for my sis.  Tomorrow is the big specialist appointment and I know she is nervous.  We need answers in the biggest way and so far it has been a bunch of "we don't know" and sending her to someone else.  Tests show there is most definitely something wrong but what.  I think that the biggest concern is walking away from another specialist without answers.  So please pray for  answers from this MS specialist, also pray for safe travels since the specialist is in San-Francisco and with all the rain there are flooded roads to deal with. 

Prayers

Usually when I ask for prayers it is for Junior but in this case he is doing great and these prayers are for my sister. 
I have mentioned she is having some health problems but not gone any further into whats going on until recently.  A few months ago she started having some numbness and pain in her trunk area. It quickly progressed to loss of movement and increased pain. This was to the point where she could no longer work and soon needed help with all areas of daily living(can not even walk without support and lost a great deal of movement in her arms).  Many doctors appointments and tests which lefts us more confused and frustrated than anything else.  Just after New Years a spinal tap was done which showed a high white count and protein level in her spinal fluid.  This finally caused the doctors to realize something really was very wrong and she was admitted to rule out things like meningitis and to do further testing.  We are several weeks past that hospital stay and still have no diagnosis, they have now refereed her to see a MS specialist in a couple weeks and we pray they can shed some light and give her an actual diagnosis.  With no diagnosis she can't move forward with any kind of treatment.
Her pain flows between bad and extreme but never goes away so her current day to day life is very difficult.  Two weeks until the appointment with the specialist seems like an eternity and at the moment we focus on helping her get through each moment.  Please keep her in your prayers as she faces this difficult storm in life. 

I am so thankful that Junior is doing really well right now.  He had one day with a few fevers and I thought he was catching the flu bug I had but within 24 hours he was fine again.  He has decided it is his job to keep an eye on aunty Mellisa and be sure she is okay and others are doing what they should.  Today the PT was here to see her and she was in the bedroom while he was in the living room.  I turned around to see him looking quite worried and starting to cry, he was so very upset that he was not in there making sure the PT was doing what he was supposed to.  I had to assure him that she was okay and we were making sure the PT did what was needed.  He is loving having grandma visit and sharing all his favorite things with her.  Poor grandma has gotten an education in Star Wars and I Love Lucy over the past week. 

Health is gift and can change so quickly, never take it for granted.

Better Days

I am finally on the mend and feeling so much better.  So very thankful that at this point Junior has not caught it. 
He is loving hanging out with grandma and keeping an eye on aunty Mellisa as she has PT or the nurse visits.  He is used to it being for him so finds it is quite entertaining to get to watch someone else.  My sis had her big neuro appointment but still no certain diagnosis.  She is being sent on to a MS specialist in the coming weeks and we hope to finally get answers so she can move forward with treatment.  Please continue to keep her in your prayers.

Now a few pics from our week.
Fun watching movies and hanging out with grandma. 

 

 Playing on his lightbox.

  
His sensory boards turned into star wars boards.

 

 Sometimes you just need a little I Love Lucy

 I am rarely in pictures but grandma grabbed the camera and snuck a pic of me reading to Junior.  This boy loves his books. 

Busy, Busy

Things have been very busy with doctors appointments, a hospital stay for my sister, and then I came down with the flu last week.
Junior is doing well and has been quite an energetic guy the past few weeks.
He is loving having grandma visit and I will be sure to post some pictures soon(posting from my iPad which isn't letting me add pics). My sis spent about a week in the hospital after her spinal tap showed increased white cells and protein in her spinal fluid.  She is now spending a week with me as they try to figure out a diagnosis.
I have the flu now so making this short.  I will attempt a longer updat with pics soon.

Not Feeling Well

First of all Happy New Year to everyone. 

On Monday Junior's buddy came for a visit and they had a great time hanging out and watching movies together.



Tuesday a storm moved in and Junior's asthma got quite bad.  
Lots of extra treatments, oxygen, vent time, and of course his old shows have been our life for the past few days.  The doctor suspects he has one of the resp viruses that is going around along with the asthma.  
 
After all those treatments he needed lots of napping to try and recover.  Today he has improved some but another big storm moves in tomorrow which has me worried.  Please keep him in your prayers, for him to recover, for his asthma not to go crazy with this next storm, and for his seizures to stay away(he is on a round of prednisone and that stuff really messes with his system and can trigger his seizures).

 Also please keep my sis in prayers, she has her spinal tap on Tuesday, and desperately needs answers to her recent health struggles.

Merry Christmas

Finally have a moment to say Merry Christmas and share our Christmas day.
We had a lovely Christmas eve and day and Junior was having a great day.
Both days were quiet and relaxing which is just how we prefer our Christmas.  Junior loved spending Christmas eve watching movies with aunty Mellisa while I finished up the last minute things and got some goodies made.

 He also had a visit from his buddy who brought awesome Christmas balloons, a fun package arrived from another friend as well and he had fun trying on his new spidey hat(he loves it).

We all got up early and opened our stocking Christmas morning and then Abby headed to church(Junior is not able to attend this time of year).  The gift opening happened after Abby got home and Junior had, had a little nap.

 Christmas fun, he loved his movies.

 The excited look when he sees what he got then he needed a nap but had to hold onto his toys.

 Some Christmas craziness.  Abby and I got each other the same thing. 

Please continue the prayers for my sis, her spinal tap is on the 10th of January and we pray it gives answers to whats going on.