Thursday, September 27, 2012

6 Years Ago

Six years ago today I recieved a phone call that would change my life in huge ways that I never could have imagined.  I was told of a baby who would be born in a little over 2 months that needed an adoptive family.  I did get a bit of background information but didn't know if this baby was a boy or girl or anything about his health.  I said YES.  In the next few weeks I learned that he was a boy and did have a heart defect.  I still said YES.  A week after Thanksgiving that little boy was born with a host of medical issues no one knew about.  I still said YES.  Five months later I said YES before a judge and this little boy is mine for ever and ever.  It hasn't been easy and if I had to do it all over again I would still say YES!


Five years ago today my little boy was packed up in an ambulance and transported from Children's Hospital in downtown Denver to the new campus in Aurora.  Hard to believe the "new" hospital building is already 5 years old! Today they had the grand opening of a brand new patient tower that will ultimately increase the number of patient beds to 500.  That's a whole lot of kiddos that get exceptional care in Colorado!

Thursday, September 13, 2012

The Oxygen Has Left The House

Three years after the last time Milo used oxygen at home the tanks were finally approved to leave.  Ya think the Dr was being a little bit cautious?  We still had the large liquid oxygen tank that had to be filled every month, the portable that goes with that, and 2 oxygen cylinders.  I had to quickly find the portable in the back of a closet and retrieve the cylinders from the garage while the delivery guy waited, guess I could have been a little more prepared.

                                        large liquid tank holds 100 lbs of liquid oxygen                           portable tank is filled from the big one

Milo cracked me up when he came home from school yesterday and the big tank that has always been in his room was gone.  He stopped in the doorway, he knew something was different, but he didn't say a word.  I asked him what was missing and he said, "my oxygen tank, where did you put it?" as he went room to room looking for it.  I told him the doctor said it could go back to the oxygen store.  He said "oh, great-grandpa can have it now" and I agreed that maybe he could (even though he already has his own).  Then he said " I know they put it in the Oxygen Jeep and took it away."  OK, so it was a van but yes they took it away and now there is some extra floor space in his bedroom.

Figured it was time for a medical update so here it goes:

We have now been to the clinics at Children's three times in the last two weeks.  Last week I took Milo when he was so sick from a stomach virus.  He started getting sick on Sunday night while we were in Alamosa for Labor Day weekend, Monday was horrible and Tuesday we managed to make it home.  On Tuesday night I was sure they would have to admit him for IV fluids since everything that he ate/drank/was put in g-tube went right though him and he was retching.  Finally around midnight pedialyte started to stay put.  In the morning he was doing a bit better but I made an appointment for him anyway.  He avoided the IV fluids and recovered enough to go back to school on Friday.  He lost quite a bit of weight though so now he needs to pack on the pounds.

This week started with a trip to the Pulmonology Clinic for his routine check-up.  It had been a year since she had seen him (yup, I was gently scolded for waiting so long) and she was very pleased with his progress.  His oxygen sats were in the upper 90's rather than the mid 90's where they had been before.  The noise (indicating his floppy airways) she could always hear when listening to his breathing with a stethoscope was gone unless he was upset so that is very encouraging to hear.  We made good progress with his prescription meds too.  She lowered his oral steroid dose and decreased the strength and frequency of his in hailed steroid.  With all the germs at school (hello stomach virus) I'm good with keeping some steroids around for the winter.  She wants to see him in 6 months and hopefully we'll have a plan to get off the steroids then. Oh yeah, she finally agreed that the oxygen could leave the house :0)  When we go to pulmonology appointments I know we will be waiting awhile to be seen but I've come to expect it and really I'm OK with it because she is very thorough, takes her time and makes sure all our questions are answered. She does her notes in the computer while she is in the room and we get a print out with a little recap at the end of the appointment.  As an example of  why I like her so much, here are a couple of things from our print-out.  "Milo looks good today.  He sure has done well."  and "Flu shot of course :)"  yes she typed the smiley, and "Keep up the good work!"

Today was a trip the the Cardiology Clinic.  It has been a year since we had seen his cardiologist too.  I was supposed to make an appointment 6 months ago, oops.  In my defense, if anything seemed even a little bit off I would have made an appointment much sooner.  These appointments generally last about 90 minutes but actual doctor time is about 5 minutes.  He had a echo done (ultrasound of the heart) and cooperated pretty well for that.  Putting on the 3 cardiac leads caused a bit of a meltdown but nothing Kung Fu Panda couldn't cure.  After that was done the Dr. came in and said that everything they could see looked good and the pressures in his heart were good.  The stint that was placed last year was doing it's job well but they couldn't see far enough on the other side to evaluate the narrowness.  She said that the heart pressures would be elevated if it was causing a problem so she wasn't too anxious to do further testing, I'm inclined to agree.  She is going to talk to the interventional cardiologist (the one who did the heart cath) so see what he suggests then she will call and we can discuss.  The plan for right now is to see her in one year, hallelujah!
I think that's enough appointments for now!

Thursday, September 6, 2012


July proved to be just as busy. 
On the 3rd we traveled to Alamosa to spend the holiday with family. 
Milo found the one puddle in the crazy dry state at the rest area in
Colorado City
When we arrived at my parents home we were greeted by this momma deer and her brand-new baby.  The poor little guy was still so wobbly.

Our 4th of July celebration began with the traditional parade down Main Street.  Of course my grandpa's red International tractors were part of the festivities. 

That afternoon we went to Splashland with a bunch of cousins and aunt Lois.


Then we had a family BBQ at my parent's house. About 30 friends and family gathered for some yummy food and fun.

The evening rapped up with the professional fireworks display.

Thursday we went back to Splashland to enjoy the warm water and spent lots of time playing in Grandma and Grandpa's back yard.  The weather was beautiful and we had a great time.

Friday we went back to our house stopping in Colorado Springs to pick up my cousin's daughter, Alisha.  She stayed with us for the next week.  While Alisha was here we went to the zoo and pirate's cove.  Unfortunately she was sick 3 days.  The next Sunday we met up with my cousins & aunt to get Alisha back to her mom.  We met at the Outlets at Castle Rock and did a little back to school shopping too.

Grandpa came up for a weekend, we enjoyed playing with him :0)

The end of July/beginning of August Grandma and my newphew Brett came up to spend the spend week.

We went to Big Time Trampoline Center

Swimming at our neighborhood pool


Went to Heritage Square and got caught in a huge rain/hail storm.  We waited it out in a storage room then resumed our fun.  The carnival rides were a bit small for Brett to enjoy but Milo loved them.  Both boys really enjoyed the Alpine slide.
Brett loved the alpine slide
but he got lost in the maze

Milo enjoyed climbing

Had a blast at Water World even though we got rained out and didn't get many pictures.

The last day we spent 12 hours at Boondock's Fun Center.

bowling, playing laser tag and arcade games...

bumper boats and go-carts...
mini golf & a giant play structure where Milo spent hours.

After Grandma and Brett left we had a week to relax a bit then Milo started Kindergarten!

Phew, we had a busy end of summer break but we had a blast!

Wednesday, September 5, 2012

Labor Day

We had a great start to Labor Day weekend.  Milo didn't have school on Friday or Monday or Tuesday so we ventured down to see family.  On Saturday we went to the Farmer's Market, and then had a photo shoot.

After that we played at the park and saw a few old cars at the Early Iron Festival (we got there pretty late so there weren't very many left), had dinner at Chili's and then Milo's cousins came over to spend the night.

Sunday we went to church, back to Grandma & Grandpa's for lunch, jumped on the trampoline then went out to see Great-Grandma and Great-Grandpa.  The cousins spent the night again :0) but Milo started to feel sick and this is how the next few days went:

Monday was spent sleeping and managing a nasty stomach virus, Tuesday we managed to get home without too much drama and Wednesday Milo got to stay home from school and see the doctor.  Luckily he is on the mend now but still pretty calm, watching TV and napping.  Maybe he'll get back to school on Friday...