Thursday, September 8, 2011

Thoughts from the surgery waiting room.

Our princess is currently sedated and sleeping peacefully on an operating table while they look into her and take biopsies of her stomach,small intestine and esophagus. Its a fairly quick procedure, but we've been up since 5 getting ready and had to be in pre-op at 6:30 so we are all pretty tired. She has been unable to eat since midnight so she did good for a little while until she realized I was holding breakfast from her. Her GI is doing the procedure so I feel much calmer knowing she's not in the care of a total stranger. She also normally cries when someone takes her from my arms but she was extra sweet and snuggled right up to the nurse who carried her back - that made me smile. She was so cute this morning, she had this big wrinkle in the middle of her forehead all morning like she was really worried once we arrived at the hospital. She definitely recognized everyone wearing lab coats and looked at me like "not again!"

So, I know its been awhile and I have so much to update. I can't read or think about anything else when she's away from me like this so I like to think about her, write about her.... share with you how she's been doing. She is going to be 10 months old on Saturday. She has been crawling for weeks now and loves to get into everything. Normal toddler stuff - pulling books off of shelves, trying to splash in the dog bowl... it makes me smile to see her doing these silly 'normal baby' things.

Developmentally, I've had some concerns lately. I know I told you guys she was talking a couple months ago - saying a handful of words quite clearly and often. "Mama" "Dada" "Night-night" "Ahhhhdddison" and lots of consanant babbling. Over the last 6 weeks she has stopped saying anything and now only babbles basic vowel sounds "eeee" and "ahhh". We are going to keep trying and see if she gets them back by her birthday... 62 more days. I believe they are supposed to have 3-5 words by then.Then, if it doesn't get better we will call early intervention and/or see about getting some speech therapy going. I wouldn't really be concerned but she was saying them so clearly, calling me Mama frequently. And now nothing at all. It just makes me nervous since she's never had neurological testing.

She desperately wants to walk. She crawls very fast and efficiently, pulls up on everything and lets go ofme with one hand now. She is so shaky trying to hold herself up on those tiny legs but she is very determined. She eats all the 'big-girl' foods now - waffles for breakfast, turkey and fruit for lunch, pasta and chicken for dinner... you'd never believe how much food this little lady can pack away. Its unreal - and of course she is still drinking tons of formula too. She recently mastered the sippy cup by herself and likes to drink out of that now too.

Her weight is about the same, 14 lbs 5 oz. I've had to increase her dosage of senna to keep her comfortable but other than that things are going well from that end of things. We have resumed doing irrigations from time to time by Cincinnati's suggestion. Which amazed me because all this time I thought she was going with her laxatives and it turns out there is still poop in her everytime I put the tube in, even if she's just gone.

Finally, Adam and I are excited to share some happy news, that we are expecting our fourth and last baby next April. A lot of people have expressed their concerns, saying 'How do you know she won't be sick too?" And all I can say is, we don't... but we DO trust that our God has a perfect plan for both Addison and our newest child and we are perfectly open to whatever that plan may be. The doctors have all said its extremely unlikely that Addison's condition would happen again - a one in a million thing. But of course, in life there are no guarantees. But Adam and I KNOW that no matter what, this baby will be a loved and cherished part of all our lives... Addison adores babies and I'm sure she's going to be a fantastic big sister. We are just trying to enjoy this pregnancy as much as possible since it will be the last, and we are praying this will be a healthy, full-term baby. Its hard to believe Addison will be a running-around, talking, 17 month old when the baby is born!

Well they just came out and told me she's done~! Dr. N said she did great, he took several biopsies that need to be sent off to California because its one of the only places that do the testing. It will take about a week, but he will call to let me know the results. More waiting.... as usual.

Well, that's most of the things I wanted to to say, so thanks for reading and for all the prayers and thoughts and messages today regarding her procedures. You are all part of a huge 'safety net' for me - I always feel better knowing how many people love and think about our little girl through everything she's been through. So for now, we are just thanking God for getting her this far and thanks to you for all your prayers.


1 Thessalonians 5:18
 "Give thanks in ALL circumstances, for this is God's will for you in Christ Jesus."


  1. Thanks for the update! And congratulations on your pregnancy! Praying for Addison and your family.

  2. Thanks so much for the update. I do think about Addison and your family often. Congratulations on your pregnancy! I hope the biopsies bring some answers.

  3. Congratulations. Developmentally it is perfectly normal at that age to not say words that they were previously. They often do not associate the words or sounds with the actual people or objects, even if you really think they are. That happens later. So basically she moved on and is saying different sounds. I know that when a baby says mama, looks at you and then says it, you assume that the baby is identifying the mother but it is not always the case. At age one, babies often have no intelligible words. Some, like my first daughter have phrases! I am a special Ed teacher with a strong background in speech delays. My 9 month old says momma for 3 months, I have not heard it for a month, but she is saying ba ba ba, dee dee dee, and starting to sign, she has moved on!

    Good luck.

  4. Any updates?