October 2012

October 1 (day 5)

Today has truly been a blessing. Jonah looks AMAZING! This morning he looked good....but by the time I left.....he was his ol' self! He took it easy all day, but this afternoon they took out several of his lines and even his oxygen (that he may need when he sleeps for precautionary purposes). I am so amazed by his progress and feel that we may not be at MUSC as long as it was told. PRAISE GOD!!! We had a nice surprise when Joshua Nathan Kellner and BJ Bj Lewis Strickland came to visit. Thanks guys! Also....thanks to our amazing neighbors Chris Smith and Jeremy Smith for the hotel tonight :) We owe you a "babysitting night"!

Good Morning!

 

 

 

Hey Poppi!

 

Let me tell you what happened last night Poppi!

 

 



 

See.....even the nurses love me.....they draw hearts on my tape!

 

Daddy.....you are silly!

 

He just closed his eyes when I kissed him :)

 

 

Peek a boo!

 

 

I think I remember this thumb!

 

 

Huh??

 

 

You think you have a story....you should hear mine!

 

 

Can you please stop taking pictures of me Mom!!

 

 

I just LOVE my monkey lovie!!

 

 

Night night!

 

 

October 2 (Day 6)

 

Jonah looks pretty good today..but they had just taken out his catheter. Now they are trying to start an iv...so he isn't too happy :( They will be taking out two other lines today...so I can hold him :) And....we move to the cardiac floor today! GOD IS GOOD!!!!

 

Enjoying being in room 810 on the cardiac floor. He is sleeping peacefully. Thank you Tim and Sharon Farmer for the visit! Can't wait to take him home....it will be here before you know it! To HIM be the glory. Enjoyed a quick bite to eat with Linn at Halo before he had to pick up Lily. My mom and dad are on their way home. It was nice to have them here......

 

Not only is Jonah overcoming heart surgery....but his first tooth just broke the skin!!!

 

 

So sad......last morning in PCICU.  HAHA!

 

 

We won't miss all these wires and poles!

 

 

Don't you just love my eyes!

 

 

Take one last look at me PCICU nurses...I am getting ready to get OUT OF HERE!

 

 

I will have my teddy with me to help though!

 

 

And here we are in the room.  It's much nicer here!

 

Room 810!!

 

 

Giving praise to the one who made this all possible!

 

 

By the way....sucking my thumb and biting it helps with these two teeth coming in.

 

 

October 3 (Day 7)

Had a wonderful day! Enjoyed the visit from Renee Batey as well as Pastor Stan Cruse. Loved Lily's expression in the ATRIUM. She truly enjoys playing there, but I have to say.....I am glad that she won't have to play there for some time and pray it stays that way! I am praying for a clear chest xray for Jonah as well as a night where no additional oxygen is needed. Thank you for all your prayers....God has truly provided more than we could have ever expected during our stay at MUSC. Will let you know the final news in the am!

 

Good Morning!

 

Mom enjoyed giving me a sponge bath and putting REAL clothes on me today!

 

By the way.....these teeth are quite a pain!

 

 

Do you like my shirt?  I got it from cousin Will!

 

 

Praying that I get to go home tomorrow!!

 

Soooooo it sounds like if Jonah's xray and oxygen levels are ok tonight.....WE GET TO GO HOME TOMORROW!!! 3 weeks.....no way!!! 1week......ok!!

 

October 4 (Day 8) 

 

WE'RE GOING HOME TODAY!!!!!

 

 

Last sponge bath in the hospital....it was so good....I had to take a bath afterwards!

Watching Baby Einstein on You Tube....gotta love it!

 

 

 

These teeth are killing me!

 

 

Happy Baby!!

 

 

All ready to go.....holding on for the ride!

 

 

The sky the night we get home... how can you not believe in a God with such beauty?

 

Lily is so happy to have us home!

 

 

Beautiful sky....wonder how much longer we will live here?

 

He was really uncomfortable all afternoon.  I think it was due to all the "movement" once he got home from the hospital.  Poor fella!

 

 

 

Watch out....she's got a good arm!  She loves this ball that her Aunt Charlene and Uncle Billy had bought her :)

 

That night:  I feel a little apprehensive now that we are home....I felt safer with medical staff in the same building. We got home at 2 pm...had to pick up Lily at 2:30..... just in the nick of time! Then we get a text. Our first showing is tomorrow on our house at 1pm. Please pray :)

 

 

October 5th (first full day home)

 

Jonah had a great night! He was really fussy yesterday, however I think that is due to all the "moving" around he is doing at home and his new TEETH coming in:) The person who came to look at our house was here 15 mins....not bad. Open house tomorrow. Pray for a quick sale if it is meant to be :) Thank you for your help — with Crystal Manshaem Weeks.

 

Our first walk through's comment....."may put in an offer".....hmmmm. Open house scheduled for tomorrow and already another scheduled showing. Thanks all for prayers!

Thank you also Tamara Lee Meyer, Allison Adkins Major, and Melissa Steele for the visit. We enjoy having company....especially these next two weeks where he can't go out :)

 

You are too funny!!

 

 

Thanks for this teddy Gigi.  Here's a kiss for you!

 

 

Missing days in October.....will come soon

October 12th (Friday)

 

BIG day for Jonah!

 

Jonah was the FIRST patient at the new Single Ventricle Clinic at MUSC.  He had a series of tests run, and he is doing amazing!  He also had his stitches and sutures removed.  Dr. Zyblewski said that his incisions have healed incredible.....one of the best healings she's seen.  That's because Jonah has the best PHYSICIAN looking over him :) 

 

 

 



 

 Then.....we went to Level 4 Orthodics to get Jonah's helmet.  This will help reshape his head correctly due to his inability to sit up independently.  Because he is always having to lay down (due to tube feeding), this will actively correct the shaping of his head so he can be "ready to go" as soon as he is off the feeding tube!  We can't wait to decorate it and get him used to wearing it.....since he will have to wear it 22 hours a day :(

 

 

 

October 13th (Saturday)

JONAH IS 7 MONTHS OLD!!!

 

 

Jonah finally gets to take a bath again!  He was sooooo excited!

 

 

 Finally took a picture of his first two teeth.

 

 

 

Lily will do anything to make people laugh :)

 

 

 





 

I wonder how far I can put my thumb in my mouth???

 

 

 



October 14th (Sunday)

7th month photos....taken a day late :)

 

 

This is my "not so favorite"helmet.  However, it is helping shape my head.  Can't wait to take it off!

 

 

 

Thumbs up!

 

 

Love those legs!

 

 

 

Here's my tongue!

 

 

October 21st (Sunday)

West Farm Corn Maze

 

 

I'm not sure about this place.....

 

Is that Lily behind me?

 

 

 

Lily enjoyed feeding the cow :)

 

 

I'm still not sure....

 

 

 

Had to get a picture of him next to the scarecrows :)

 

 

 

Silly Daddy!

 

 

 

Just love that smile!

 

 

Mommy's Boy :)

 

 

Lily enjoyed painting her first pumpkin!

 

 

 

 Yes....that's a sucker in her mouth!  She was able to get out by herself this year!

 

 

 

 

WEEEEEE!

 

October 24th (Tuesday)

Got a call from Greenwood Genetics today. Not a call you really want to get. They have found "2 things" with Jonah. They say they are very rare and the doctor will have to brief us on them Thursday at 1pm. Needless to say, I am scared. But, God has been faithful through this all. Please pray for peace and comfort during this time for us.

Keep your lives free from the love of money and be content with what you have, because God has said, “Never will I leave you; never will I forsake you.” So we say with confidence, “The Lord is my helper; I will not be afraid. What can mere mortals do to me?” Hebrews 13:5-6

 

 

October 25th (Thursday)

Greenwood Genetics

 

God heard our prayers....but we aren't out of the woods quite yet. They found one gene that was "too big" and one that is "shorter than normal". These genes are so small.....most tests don't pick them up. One gene.....the only thing they know about it.....with animals it causes heart defects. The other gene.....they have no research. They also sent off testing for one specific gene.....results will be back next week. Overall good news....but next weeks results will let us know he has a particular syndrome. Please continue to pray ;)

 

Just a variance of unknown signicance was found on that one gene....low likelihood that he has syndrome...but now they have to compare our Dna to his to see if it is inherited...
or if he may still have syndrome....aaahhhhh. they have NEVER had these results before. Please pray!

 

 

October 29th (Monday)



A change of plans.....

 

So....Jonah woke up and went to sleep the night prior with a low grade temp and kept putting his hands in his mouth.  I figured he was just teething.  He was fussy all morning and not acting him self.  He finally took a decent nap around lunch and woke up around 2pm.  When he awoke, he was very lethargic and could not focus with his eyes.  His color was extremely gray.  I immediately called Linn and told him I would be bringing Jonah down to the ER.  We were on our way!  They immediately decided to admit him. His oxygen levels were extremely low and his temperature was starting to rise.  Back on 8D we went......even in our old 814.

 

 

Please turn out the lights!!!

 

 

 

October 30th (Tuesday)



From room 814.....

 

Jonah had a rough night coughing.  He didn't like the oxygen in his nose.  Once they took it out, he felt much better.  But then Jonah decided to "shake" things up.  His stats got so low, doctors had to come rushing in twice.  The first time the nurse told us, "don't be scared.....but alot of people are going to be in the room in a minute".  A flood of people came rushing in.  They were trying to take blood, trying to position him, looking for a pulse, etc.  But, through it all....he was fine.  They had talked about moving him to the PCICU, however he got to stay in the room for the night ; )  They have determined he has the "Rhino"virus---the common cold.  He also has a "blood infection".  They are growing it to see what it is, however treating him with antibiotics to try and get rid of it asap.

 

 

Get this thing out of my nose!!!!

 

October 31st (Wednesday)



From room 814.....

 



 

Jonah had a horrible night.  He coughed continuously :(  They ended up taking bloodwork in the middle of the night and an xray.  I hope he can sleep a little during the day....but not too much!