August 2012

August 1

Jonah had a heart catheritization and a head MRI today.  After the procedure. we met with the heart cath doctor.  Things went well, however they have some concerns. Jonah's pressure to his lungs is higher than they like. It sounds like we will have to start a new medicine, possibly go for another cath, and then have his next surgery in about a month. However, due to this problem, he will be hospitalized longer than normal :( Not the news that we wanted, however glad that he is ok.



August 3

Jonah's appt at the Cranio Facial Clinic went well. Had a brief scare from the Cranio surgeon....however I think he was just acting like a "dad" at the time. Met with the neurosurgeon's PA to discuss his MRI results. Will be meeting with the Neurosurgeon once he get's back into town. Another day on the emotional roller coaster....


August 9

Struggling.  Jonah struggles to lift his head off the Boppy.  He is a trooper though! 

One day it will be hard for us to even remember how he struggled!

August 10

So after much prayer and consideration, Linn and I decided to get a second opinion from Boston Children's Hospital. On the way to bible study, the Lord spoke to me and told me to make it "personal", so that I did. Now, instead of opening up a package with paperwork and cd's, they are going to see a scrapbook of Jonah and his family. They are going to read our story and know what Jonah has been through. Please pray that they will give us the answer God wants them to. (Was sent out August 9th)

August 12

Jonah tries pear baby food......he's not too fond.  But we will try, try again!

 

 

 

 

August 13

Jonah is 5 months today!

August 14
So......MUSC's plan is to go to surgery September 27th (Thursday). They will be starting him on medication on the 11th of September, hoping it will reduce the pressure in his valves prior to surgery date.

I then contacted Boston. They received the package yesterday and the surgery center opened it today ;) Sherry (the receptionist) stated that "the package was put together well and Jonah is a ...

doll". She stated that Dr. Rathod will be reviewing his record. She anticipates that we should hear from him within 2 weeks. I notified her of the surgery date and she is confident that we should be receiving a phone call.

I ask that you pray for wisdom and direction during this time. I ask that you also pray for peace......so that we can enjoy his mere presence during these next few weeks rather than worry

Later that day...........spoke with his Neurosurgeon's PA.  She agreed that Jonah should be fitted for a "helmet" to assist his head shape.  We will be going for a fitting on Thursday.

August 15

Sucking thumb.......Jonah's getting pretty consistent now when trying to suck his thumb.  I am so happy for him.  You ask why?  I want him to be able to soothe himself.  He is unable to take a pacifier and doesn't do well on a bottle now.  This is another form of oral stimulation that will help him towards taking a bottle after surgery :)

August 16

YEAH!!!!! Heard from Dr. Rathod this morning. He is amazing! He was able to give advice, information and future support. After speaking with him, I feel we are in the right place, however he gave some important surgical advice that I hope MUSC is already doing. God has truly given me the peace of mind I need going into this surgery. Thanks everyone for your prayers. They worked!

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. 8 Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable -- if anything is excellent or praiseworthy -- think about such things. 9 Whatever you have learned or received or heard from me, or seen in me -- put it into practice. And the God of peace will be with you." Phil 4: 6-9 (NIV)

August 17

Jonah tries rice cereal for the first time.  He likes it MUCH better than fruits!

August 18

This is the amazing smile I get to go to sleep next to every night!

August 19

Some of Jonah's favorite things.....his giraffe Sophie and his thumb!

August 20

Jonah's trip to get fitted for a helmet.  This will help shape his head correctly.......despite the fact he is always lying on the back of his head.  Due to his feeding tube and acid reflux, it is difficult to give Jonah all the tummy time he needs. 

(See how hard it is for us to get around???  With the help from my cousin's friend Shay Ricketts, he was able to construct this portable IV pole so that way we could make sure Jonah's food and farrell valves are high enough.  HE IS ABSOLUTELY AMAZING!!!)

 

 

 

August 20th.....that night

 

 

This is the amazing kid I get to fall asleep next to every night!

 

 

 

 

August 23rd

 

 

Not only does Jonah look content because he has constant entertainment from his big sister Lily, but because his feeds have been going phenomenal.  He has been throwing up far less and has been more comfortable.  Why you ask?  Because he has gone back strictly on breast milk.  Although eliminating all milk and soy has been difficult, it has definately done its job for Jonah!

 

 

 

 

August 24

 

 

Just had to add these two photos!

 

 

August 26



 

 

Jonah finally gets to meet Auntie Chris, Uncle Eric and cousin Nicholas!

Although he wanted to sleep most of the day away, I was so excited that they could finally meet him.  I can't believe that the next time they will see him, he will most likely be crawling.  I can't wait!

 

 

 

And.....since we had someone to take photos (ie Uncle Eric and my Dad), we decided to take some family photos.  Lily now asks, "Can I hold Jone"at least 20 times a day now! 

She loves her little brother.  And I have to say, he definately loves her too!

 

 

 

August 28

 

 

I can't believe we only have 30 days until surgery!