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)

Emma waiting for her EKGHelping with EKG Stickers!
EKG in progress (she loves the cords!)
Getting her ECHO (which she hates!)In her booster- It was a loooong day!

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!)

Thanks for praying!

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Comments

  1. Rebecca says:

    I’m so glad that Emma’s check-up went so well! She’s such a beautiful, joyous-looking child.

  2. Addie says:

    What a great kid! Praising God for a great day! :-)

  3. Barb says:

    Oh Heather. She’s just adorable. And a good report today! Hooray!

  4. bev says:

    She is a beautiful little girl — and from what I’ve read, she’s lucky to have you for a mom.

  5. alsion says:

    Praising God that it all went so well. She is a stunning angel!

  6. Angie says:

    Oh, I am so glad to hear that all went well. What a trooper! Thanks for the update!

  7. flipflop says:

    What a praise!!

  8. Stacey says:

    What an amazing little girl and mommy. I am praying for y’all. Glad the appointment went well.

  9. Suzy says:

    I love her silly face! She’s a cutie :-) Glad your day went well.

  10. Karla says:

    Wow. What a day.
    I love the silly face! :) She’s such a cutie.
    Hey, thanks for stopping by my home tour. Glad to have you visit! :)

  11. Paula says:

    Praise God for such a great report. Yay Emma!!! I am so glad you heard good news. You are a great mom!!

  12. Tammy says:

    Oh I am so happy to hear this! Praise the Lord for this good report!
    You all are still in my prayers!

  13. Valerie says:

    What wonderful news! I haven’t been by in awhile, so I shall now offer up prayers of thanksgiving for a good report from the doctor. Take care!

  14. Rebekah says:

    What an answer to prayers that all went well. I know, everyone has said this, but she is just so beautiful! Really, she looks like such a sweetie. It’s great to hear it went well.

  15. voni says:

    Thanks for filling us in on Emma. Still praying for you all.
    My Emma starts preschool this fall too. She will have half days. All my kids will be in school. An odd feeling.

  16. Indy says:

    Im glad it went well. She is so precious!!

  17. Janice says:

    so wonderful to hear the good news!!! what a relief.

    and so great to see her and her fun, beautiful smile. what a sweetheart – and I am so glad to hear how much she is talking that must be so nice for you to have that improved communication with her.

  18. Jennifer says:

    Hi, this is my first visit to your blog, saw it on Sara’s (in the midst of it) blog. What a remarkable mother you are, that you have been allowed in this wonderful child’s life! She is the most precious of gems, I am so glad her visit went well. I know a tiny bit of what you go through, my daughter was born with a birth defect in her eyes and is blind in her right eye, but you know what, we got her cosmetic contacts to make her eyes look “normal” and my mom and I both cried because it didn’t look like our little girl anymore, and we wanted and love her and think she is beautiful just the way she is! Just like your angel. I know what you go through is a million times harder than what we have went through and I have so much sympathy and respect for you, you are an amazing mother and family, God bless you and may He help you bear all your burdens.