The past few weeks have been more than I can handle!  It seems that when it rains, it pours.  I know that I shouldn’t complain because Oliver is alive and he is well and he is happy!  But, my heart is heavy from all the stress.

On July 6th, Oliver had surgery to create a tear duct.  He was born without one!  It had nothing to do with Down syndrome.  It was just something that happened.  During the placement of the probe (that stays in for 3 months and then is removed), we had an ENT doctor perform and ear exam while he was under general anesthesia.  The ENT called me and stated Oliver had fluid in both eardrums and asked my permission to lacerate the eardrums to drain the fluid.  Both eardrums were drained, and the right one was infected.  An ABR hearing study was also performed while Oliver was asleep.  The ABR came back stating Oliver has moderate to severe hearing loss in one ear, and moderate hearing loss in the other ear.  All good things to know to ensure we can guarantee the best possible chances for Oliver to accelerate in his speech. Oliver will have another hearing study on Sept. 23.  The Sept. results will help us to determine how we are going to treat the hearing loss (hearing aids, or a Baha head band).

After the surgery and tests, the PACU nurse carried Oliver to me (Luke and I were waiting in recovery for him).  The nurse had a blanket over her shoulder.  There was bright red blood on the blanket.  When Oliver turned to look at me, he had blood draining from his eye, his nose, and his ears.  Wait for it!!!  Oliver had the biggest smile on his face!  I couldn’t help but panic and have inappropriate laughter at the same time.  Nobody explained all the bleeding that would happen after his surgery.  It was normal.  But, seriously.  Oliver smiling.  The nurse said that most babies and children wake up crying.  Oliver woke up smiling.  Of course he did!  

About a week and a half ago Oliver began having a tough time sleeping at night.  I was suspicious of another ear infection, but I kept thinking that he had just finished his antibiotics from the surgery a few days prior.  Oliver was progressively getting worse: hitting his head, not sleeping, not eating, but no fever!  I finally decided I would take him to the doctor (on my day off).  That day Oliver took his nap and he ate his normal amount of baby food and formula.  So then, I thought he was getting better.  I should have known better!  That night I got 3 hours of sleep and woke up to work a 12 hour shift.  I called home to check on him and we was doing better!  (Hello!  Ears!  Classic symptoms!)

Yesterday, my husband calls me at work to tell me that Oliver had pulled out his probe that had just been placed a few weeks ago and that he couldn’t pull it the rest of the way out.  I didn’t want to leave work, and it didn’t seem to be bothering my little man.  I finished my 12 hour shift, hurried home, ate a snack, packed up Oliver, and headed to the ER.  Long story short, Oliver had to have an ENT physician come to the ER to remove the probe.  It took her multiple attempts before she was able to remove it!  It was awful seeing Oliver in that much pain.  But, they were able to successfully remove it!

Today, I finally took him to the ENT.  (I still can’t believe I waited this long to have him assessed.)  Oliver has fluid in both eardrums and one is infected.  We will be starting a new antibiotic.  AND, his eye is now infected.  We also will be starting antibiotic eye drops.

Tomorrow we get to go to the eye doctor and the allergist/immunologist!  Just another day in the life of Oliver!

Let me share this with you.  Oliver has been through so much in the past 15 months of his life.  All the testing, surgeries, hospital admissions, specialist appoints, and his routine pediatrician appointments.  He continues to shine so bright!  The doctor yesterday compared him to a light switch.  Oliver will cry during his testing and then they finish the tests and he stops crying.  He even reaches out for them to hold him.  This always makes them laugh.  They can’t believe how forgiving he is!

I know there will be times when I fail as a mother.  I should have taken Oliver to the doctor for his ears, but I didn’t because I didn’t want to take off from work and I didn’t want another bill to come to the house.  I am so emotionally and physically tired.  Right now I feel completely defeated.  I have a full time job I love!  I have my other two little people that mean the world to me.  I have friends and extended family I never get to see.  I have SO many doctors appointments and therapies that I cannot keep up with all of them.  Medical bills that are piling up.  I am still trying to figure out how to balance everything in my life.  There is one thing I can tell you!  I love this little one and my two bigger ones with all my heart.  Looking at them, you can tell they are smothered in love!  I extend grace to everyone!  Now, I will be learning how to extend grace to myself!   I AM doing something right!  I learn from my mistakes and I move on!  Thank God for a new day!

For we are ALL fearfully and wonderfully made!