Monday, January 1, 2018

Let's Play Catch Up

We are going to take this 3 months at a time.

January is the start of a new year and goals that I have set for myself.  Rhett and Dylan had an appointment January (finally) to get them set up with obtaining wheelchairs for the boys.  This was only the beginning of a long process.  They recommended that Rhett get a follow up MRI to check on his shunt.  Rhett had an follow up appointment due to his coughing up blood.  Nikole also had an appointment so thankfully I was able to combine those appointments into one visit.  The very next day during the MRI that Shriner's ordered I had to interpret for Rhett since they told him to take out his hearing aids and then lay on the table.  I was able to watch the tech panic as Rhett's oxygen saturation dropped between his oxygen on his wheelchair and the oxygen on the wall in the MRI room since they couldn't bring the tank in the room because it was metal.  He  drops so fast that by the time that he was hooked up he was in the low 70's and the tech looked at me and asked me if he normally drops that quickly, of course I told him yes.

 Rhett's oxygen dropped very quickly after he was told to take himself off the tank since it could not go in the room with him.  He was gray by the time he got to the table.
The tech made sure Rhett was alright before hooking him up to get a MRI.

 Rhett was able to watch a movie while he had his MRI. Lucky boy!!

His shunt is still in place and doing it's job correctly.  YAY!!  Dylan's birthday was a lot of fun.  He is the cutest like stink.  He was so excited to turn 9. 

Loves puzzles and figuring them out.
He is a joy to have such a positive force in life. The Saturday after Dylan's birthday we were able to go to OBT (Off Broadway Theatre).  When there they asked if anyone was celebrating any birthday or anniversary.  Of course Dylan, Nikole and I got up and they sang to us. That was fun!  It was a first for me, I normally do not do that, but I wanted my kids to go up and they wouldn't without me. HAHAHA!!
Driving test!  Crazy scary to sit in the back seat of a driving test.
Nikole's birthday was the very next week and we were able to spend some of the evening at family counseling.  We brought cake and had that with the counselor, of course the kids loved that and were so happy to be able to share special times with other people.  They like to celebrate, the more people the better. 

15 years old!!  Happy Birthday Beautiful!!!

She was so little.

Thankfully Both Dylan and Rhett got covered by Medicaid special for children who is medically complex.  So all these appointments are not digging us deeper than we could possibly be able to ever pay.  
I was doing my real estate education while Gavin was doing his education.

February came with an appointment for Nikole to see the cardiologist.  She has two holes in her heart so she needs to be followed by the cardiologist every three years to make sure the holes are not enlarging or bothering the valves in her heart.  She got an all clear and they think one of the holes has closed and she doesn't have to see him for another three years. 
She is able to watch a movie while having a ECHO.

The lovely scenery from Churchill, day before the appointment.

After the appointment.

Turned this in right after the appointment.  He made it this far!

Gavin doing his school work.
The day after her appointment Dylan had his SEP Conference (Parent Teacher Conference), we found out that he is behind on writing to almost a first grade level, reading is low and math low. My heart hurts knowing that the deaf school didn't help him to be on grade level.  Dylan and Rhett both had an eye doctor appointment and of course Dylan's vision changed while Rhett's stayed the same. 

This is how we watch movies at the eye doctor.

 Doctor appointments galore. To bad that they just seem to keep happening. Thankful this was just a well child for Nikole and Dylan. Rhett was just being checked to make sure he was not coughing up blood anymore.
Hair cut!  She so needs it, since it is getting long and she isn't caring for it as well as I would like for her to take care of it. She wasn't excited, but we were excited to see grandma and aunt Kenya.

The length is really long. It needs to be shorter for the best results.

Oh my gosh there is natural curl!!! She was so shocked and she looks amazing!!!

 Doesn't she look great?? She is gorgeous!!  She just couldn't believe that she had curls.

The Stake had Primary children sing at Stake Conference and this was the group. Cute Dylan!
Since it is February it is also valentine's Day! I helped this little boy make some for all his friends at two different schools.

I have no idea why it rotated when I uploaded it.
On top of those appointments those boys were also seen by a doctor at Shriner's.  I was so happy since that is what helps them get wheelchairs, it was interesting to find out that Dylan has scoliosis and is going to be followed for that.  It is a little worse than Rhett's when Rhett's was found out when he was 4 years old.
Ordering the wheelchair.

On the way to the audiologist. How is it they get to sleep and I get to drive?

After that awesome appointment and getting more info on the boys and setting up a time to see the whole team of doctors in June for the skeletal dysplasia clinic we were luck enough to see the pulmonary doctor again, yay us!  The boys had their normal routine pulmonary function test and both of the boys dropped in their lung function. 

Get myself all dolled up before taking on the doctors, especially the pulmonologist. Since I know what is going to happen. I want to look good while bad stuff is going on.


And the interpreter is there waiting with us.
But I was expecting that so as to not cause such a shock and sadness.  Now we are going every 3 months for lung function tests.  After such not good news I was grateful for the month to be over with a send off from Utah Rare.

Dylan doing homework and bored.

No pictures of that little boy.

Glad to support Mark and the AHF knowing how much they mean to me and my family. It was not hard to be there to support a great cause and get more information about other people who have rare diseases and disorders.

​March​ was even crazier with appointments than I had thought until I looked at my calendar.  Rhett and Nikole had a orthodontist appointment the beginning of the month. 

Nikole is going to get her braces off next month!!!
Color of Retainer.

Picture on retainer.  She is so excited!!!
Rhett was in his last play at JMS and was so happy to be playing a king!
Thank you for all your support!!  We did amazing!!!
Nikole had a field trip to the zoo and would get extra credit if a parent went, so I went with a bunch of teens to the zoo in freezing weather.  I had to even follow a itinerary.

They were so noisy that the Gorilla hit the window and was really irritated.

Nikole was trying to get a picture of the baby and the mommy monkey. This is what we got so she wanted a picture of the picture. HAHA!

Ended with the Lions!
After that we had an opportunity to go the Utah Rare Symposium on Saturday.  We had lunch and listened and visited with other families affected by those children with special needs.  There were doctors, laboratory people and even other parents.  Dylan had a doctor appointment that following week.  I am sure he was stuffy and coming down with something.  Thankfully I am usually on top of things so that way I catch illnesses before they explode usually.  The following day Rhett saw the cardiologist. 

Finally Blue Sky!!!
His hypertension has gotten worse.  The increased his meds to 5 mg in the morning and 5 mg at night.  I think they are hoping to control the blood pressure.  Of course this is the same time that Rhett's hearing aids are acting up and he needs to go to the audiologist the next day. 
Went with the young women to see Mary Poppins. It was great!
Nikole was asked to work on a Utah Flat Stanley for a grandson to someone we know.

 A work in progress and a completed project. The flat Stanley was suppose to represent the history of Utah. She researched it and is really proud of the art that she completed.
Artist and her art.
During this time I was helping my mom get a bedroom ready for guests. there was a lot of sanding and painting that needed to be done before the end of the month.
There are my work clothes, go figure.

This was the first picture I took of the room.

Again work clothes

Still work to be done.

That following Friday I met with Sam Goldstien's office to do intake for Nikole to have neurological testing.  I was also able to get Gavin in for a reevaluation for his neurological testing.  After the intake for Nikole we were able to go to OBT and have fun as a family thanks to Angel's Hands Foundation.  The following week Nikole finally had an appointment in the sleep clinic.  YAY!! 
She had to take a break from the stresses of life and just rest with a bunny.

Room Complete!

Nikole was asked by my mother to paint a hummingbird feeder in her room. She took an old one that my parents had and painted what she thought was what it looked like. She does have some serious talent.

I have been trying for so long to get her in one of those.  The doctor said he wants her to have a sleep study and then to see him back three weeks after. I was able to set up her sleep study in April on a weekend.  Nikole had her neurological testing after I had intake on both of my kids the last week of March.  She was there all day testing and Dylan had a dentist appointment the same day and my dad had a neurology appointment. 

That was a crazy day.  This last week was rather intense and I had a lot on my mind since I was running all over the place to different appointments.  Rhett was able to get his hearing checked and hearing aids back from the audiologist this week the same day that Rhett and Nikole saw the orthodontist and Nikole saw the eye doctor. 

Holy cow!  That was a busy day and I thought it was never going to end.  On the last day of the month Rhett was able to see the pediatrician since he was not feeling that great.  I had an light bulb moment that week as I ran around like crazy.  I knew that in order to change the family structure I needed to change.  It was a sad, hard light bulb moment but it brought me peace and I was calm.

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