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What a trooper!

What a looooong day! Thank you all for your thoughts and prayers. I took some pictures (nothing major, Emma wasnt feeling very camera friendly today for some reason!)

The update is at the bottom, Ill do pictures first because I know that is what you want to see! (hover for description, click to enlarge)

The visit went very well. Emma was pretty easy going up until the time to do her ECHO, and then she lost it, which is normal for her. Her heart is in an awkward position (because her chest is caved from the transplant) and the tech has to push around her g-tube (or her nubby, as she calls it) in order to get a good picture. That is equivelant to chewing nails for miss Em.

We talked with Dr. F about her development and scheduled a neuro appointment for October (I dont have the exact date in front of me). We plan on discussing her sleeping issues at that appointment. Dr. F wants us to do a 24 hour EEG which will require her being hospitalized, which I am reluctant to do because she always gets sick when she steps foot into the hospital. I understand his reasons (seizure check up) but it still terrifies me. So we will be scheduling that here in the next week too.

We talked about school and how she starts in a bit over a week (sob!) He would like her to go 5 half days - I am leaning towards 3 full days- so that is still up in the air. We have her ESE meeting next Wednesday, so I will talk to the school staff about their thoughts at that appointment.

Her spleen and liver were fine! He believes that she was fighting off an infection, which would explain the tenderness of her spleen. Her heart looked beautiful for a heart that is failing- so no changes there!

They were amazed at how much she is talking. For those of you who are just starting to follow her journey, Emma had no words up until recently. She is now talking in full sentences and is very expressive, which is a HUGE improvement. He loved that she wasnt signing near as much, and was so very polite in her discussions (please, thank you, excuse me…LOL)

He did go up on some of her heart medications (Coreg and another one) in order to help her heart function, not that the function was worse, but she wasnt at her max limit so he wanted to see if he could get more improvement with a higher dosage. The downside of that drug is that it makes her lethargic, and groggy. Maybe it will help with the sleep issue she continues to have!

So, all in all it was a wonderful day. We went out to eat dinner with my parents tonight, it was great to just sit with my family (minus my older children, who come home wednesday, I cant wait!) and just enjoy eachother. I am so very blessed to have such supportive and caring parents.

My dad went with me to clinic, which was nice. We have always been very close, so it was great to just catch up with him and spend some time with each other.

Again thank you for continued prayers and thoughts, it is always nice to come back and read that you guys lifted her up in prayer… I appreciate that more than you know!

Ill leave you with Emmas silly face- For some reason this was the face she wore all day long (in between giggles!)

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July 27, 2006 | Filed Under Everday Musings | 18 Comments

Tomorrow…

Which, for some of you will be today by the time you read this.

Please send prayers up for my little girl, as we have our monthly transplant clinic. Please pray that her heart is still holding its own, and that her liver and spleen are not enlarged. Pray that she wont be afraid when labs are done, that she would be still during the ECHO and that her EKG shows no change.

More than anything, join me in praising him for her amazing little life. She is a trooper and no matter what the future holds, she has taught me (and many of you) so much. I have no doubt that her clinic visit will fly by with no complications, and that her doctor (who by the way is a strong christian!) will only have wonderful reports for us!

Ill update when we get home tomorrow afternoon.

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July 26, 2006 | Filed Under Everday Musings | 9 Comments