March 2013

March 1st (Friday)
From our home.....

A representive from the state is coming today to see if Jonah qualifies for the MCC waiver (medically complex child). Leaving it in HIS hands.

 

March 2nd (Saturday)
From our home.....

 

So we told "unofficially" that Jonah qualifys for the MCC (Medically Complex Child) waiver. However, the two benefits of the program we were looking forward two.....we will not receive. The first due to his current status, the other due to the mere unexistance of the "help". Praise that Jonah has come this far and that this will possibly provide more "medical coverage" should he need it.

 

March 4th (Monday)
From MUSC.....

 

 

Orthopedist appointment ;). Lily has pink eye.....gotta love it! Just glad we still had eye drops from last time so we could start them early this morning.

 

Praise! Finally a doctor that says everything looks good! Most time with children with midline defects, they have abnormal spines. However Jonah's is great! Just pray that his muscles continue to develop properly!

 

 

March 8th (Friday)
From home.....

 

Lovely :( Jonah just woke up, threw up everywhere, and has pink eye too. Not sure if they will do surgery now....and next week was Linn's week off from work. Praying they can still do it....

 

From Sweetgrass Pediatrics.....

 

Pink eye, ear infection, and virus. Fever of 103. Praying antibiotics work quickly!

 

From MUSC ER.....

 

At our favorite place, MUSC Children's ER ;(. Increased breathing, high temp and increased congestion.

 

Looks like no surgery Monday. Had to give him ibuprofen because fever is higher ;(

 

From MUSC 8D.....

 

Going to enjoy a wonderful night stay in 8d. Hopefully with fluids, oral antibiotic and an X-ray in the am to make sure he doesn't have pneumonia we will head home. Corona virus strikes again ;). Silly "cold" virus plus other things really took his body for a loop!

 

 

Maybe this was a blessing in disguise....I even get to sleep in a real bed tonight in his room!!

 

He's snoring ;)

 

March 9th (Saturday)
From MUSC 8D.....

 

 

Rough night last night. They ended up having to keep him on the IV because he threw up and take him off feeds. He threw up again this morning. Definitely not himself ;(

 

One more night here. Supposed to celebrate Jonah's birthday tomorrow. Doctor says to keep party on! She says that she doesn't want him near anyone after this weekend until his cleft surgery (which now should be in 2-3 weeks). We will see how he does this afternoon....he's been sleeping most of the morning.

 

 

Finally decided to wake up!

 

 

After receiving his first dose of antibiotic in the er yesterday, he gave us big grins on the way to the floor. As soon as we got in the room, he was snoring! Always finding joy in the little things...

 

Thank you to two amazing friends, Renee Hunt Osean and Brett Osean, who always help when needed! Thank you for watching Lily last night and some today. Especially on your birthday Brett Osean. You guys rock!!

 

March 10th (Sunday)
From MUSC 8D.....

 

 

Got the ok to discharge!!!

 

 

Pictures by Stefanie Sirbas....one of Beech Hill's Finest!

 

 

He perked up at the end!

 

March 13th (Wednesday)
From home.....

 

 

One year ago my precious baby boy entered this world. He has taught me more than I have taught him thus far. I pray that although his life will have struggles, as will all of ours, he knows his Heavenly Father loves him more than he can comprehend.

 

Later that day.....

 

 

Lily said, "I drew Jonah whale"

 

 

 

 

Nothing like having a low grade fever on your real birthday! Lily enjoyed blowing out the candle for him ;)

 

 

12 months....and still going strong! — with Betty Jo Bartlett Harper.

 

 

March 17th (Sunday)
From MUSC Afterhours clinic.....

 

 

MUSC after hours....another set of infections ;(. At least he's happy!

 

 

March 25th (Monday)
From Home.....

 

 

Watch out Mozart!

 

March 29th (Friday)
From Sweetgrass Pediatrics.....

 

 

Throwing up again....back at the doctors ;)

 

 

 

At least he can smile like this after throwing up ;)

 

 

Jonah will finally stay on his tummy using the toy Auntie Mare bought him months ago. Over 3 mins on tummy!!!

 

 

March 31st (Sunday)
From Home.....

Happy Easter....HE IS RISEN!!

 

 

Happy Easter everyone. We live because HE lives!