Tuesday, April 24, 2012

Tomorrow is the big day.

We had another long day at CHOP. Today Jacob had a hearing screen and a heart echo. Everything went well. His hearing screen was not concerning at all. He responded to all of the voices and louder noises. He had a harder time with the lower sounds but he is a very noisy breather so that is probably why. That and they said it was typical for 2 year old because they have a shorter attention span. He can definitely hear. We will get another test done in 6 months or so when he will hopefully be quieter because his airway will be fixed (fingers crossed). He will also be older then so it will be much easier to get it done. 

After his hearing screen we went up for his heart echo. We didn't have a appointment to meet with the doctor we just had the echo so I assume everything looked good.

When we were done with the tests we had a quick lunch downstairs at the cafeteria and then grabbed the Sisters by Heart care packages to deliver to the Center for fetal diagnosis and Treatment at CHOP. That is the delivery unit that Jacob was born in. We met a fellow heart sister up there and both dropped off the packages to be given to families who are in the Special Delivery Unit and those who go to the center to get diagnosed. Seeing all of the pregnant mothers there brought me back to just 2 short years ago when I was pregnant and full of fear sitting in that waiting room. I can't tell you how amazing it was to see my beautiful little warrior running around that room and climbing on everything, full of life! I hope we were able to spread some hope to others just beginning this journey.

Speaking of my Heart Sisters, they put together a coffee travel mug full of goodies for me and Jake. Thank you ladies I love you all so much!

We have to be at CHOP at 6am for surgery. It is going to be a long day! I will be getting up at 4am to give Jacob his morning medication and we will head to CHOP around 5:20 or so. We are staying across town tonight. Tomorrow I will stay with Jacob at the hospital. I am not leaving his side. We still have not been able to get a room at the Ronald McDonald House, they have been booked. Please pray they have an opening soon because my mom, Andy and Aidan will need a place to stay. We have this room tonight and tomorrow but after that I am not sure what we are going to do. I am going to call around and find the lowest rates but even with discounts it cost a lot of money to stay in the City and we can't do it for long.

Jake has discovered how to open hotel doors. I was looking for a number to call CHOP for his surgery time and I heard the door close. I ran out and Jacob was running down the hallway. Thank GOD I was right behind him. Now we know that the latch at the top of the door has to be on at all times. He was also opening every door to the doctors offices at his appointments today and running away. He hates the hospital and has had a bunch of anxiety with his appointments this time around. Can't blame the kid, he is no dummy.

A really exciting thing was tonight he walked over to his pack and play at the hotel and signed sleep. As he was doing that I saw his mouth moving. I got closer and could hear him saying "Nigh Night". It was very low like a whisper but he was saying the words. I see him trying to talk a lot and always thought he was just baby talking but I wonder how many words he is actually saying but we can't hear him because it's so low like a whisper. I am so proud of my baby.

Please pray everything goes well tomorrow. I pray they are able to get it done by the bronchoscopy and we could be home in a week! If that doesn't work they will do the complete airway reconstruction which will be a 5 hour long surgery. If he has to have that then I will most likely be here for a month with Jacob and Andy will take Aidan back to WV and come get us when we are able to come home.

I will keep everyone posted as often as I am able to.

Thank you for all of the prayers for my beautiful little boy. 


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