Tuesday, September 13, 2011

Tomorrow Maggie is undergoing another MRI. The neurosugeon wants to look for anything else on her brain that might be affecting her vision, thus her head tilt. I almost hope that he finds something that would explain things...nothing bad, just some explanation. We have seen two opthamologists and she's had one MRI a year ago, and all eye probelms have been ruled out. So I'm not sure what else this would tell the doctor. But we are optimistic for answers.

Next week is another big step in our journey. Maggie and I are flying to Atlanta to see a specialist for a second opinion. Or maybe I should say our seventeenth opinion! I have done a lot of research on where to go in the country so am praying we get some answers in Atlanta. I always say I don't want to get my hopes up, but I always do....

Other than that, Maggie is doing really well! She stood by herself for three seconds yesterday, which she thought was hysterical. She is in that stage where she wants me to walk her around the house with my hands, but is scared if I let go with one hand.

Also some exciting news....

Maggie started Mother's Day Out! Now that she is almost two and her lungs are stronger, her doctor said she can go to Mother's Day Out and Church Nursery. In fact, he said she needed to go. She has been so isolated with her Chronic Lung Disease for so long. I remember when we left the NICU and they told me not to take her out for two winters. They weren't kidding! Now it's time for her to be around other children her age. The only caveat is that her nurse (Jessica) needs to go with her to do the feedings and medications. Thankfully the school agreed to this which we are so thankful for!

In addition to MDO, Maggie is also one of four toddlers in a feeding therapy school on Fridays. I go with her to this school. While Maggie and the other children get to "play" with the graduate students assigened to them, the parents have their own their little "school" where we learn about ways to overcome our child's feeding issues. What a blessing that a spot opened up for Maggie in this program and that her vomiting stopped so we could acutally go!

Another good bit of news is that the olive oil and avocados are doing their job. Maggie is now 24 pounds! We are so thankful to God for this huge improvement and for leading me to make this homemade formula. It has made such a difference! She actually looks healthier and fuller to me. And that weight gain will help in fighting any virues she may pick up at school (although Jessica says she is "pureling" like crazy at school!).

Here are some more pictures as of late:

We have a new princess in the house
Mary Lawrence started a new school

She was very confident walking down the hallway the first day...

But this was her reaction when we got to her classrom (aka she refused to go in!)

Thankfully her teacher lovingly welcomed her and she warmed up quickly. That is, after she announced to the class, "My name is not Mary Lawrence, it's Lawrence, like my grandmother."

So now at school, dance and soccer she has told everyone to call her "Lawrence".

By the way, after hating soccer last year, she loved her first practice and game this year.

Justin is relieved!

That's all for now. Other than please pray all goes well with anethesia tomorrow for the MRI.


  1. HI Lee,
    This is Kelli - from the PROM list. We PROM'd and delivered at the same time - my son is Beckett. Just wanted to say hi and let you know that I still follow Maggie's wonderful progress. And, to let you know that Beckett is only just now weighing 24 lbs too! Sounds like all is going well with her food, but don't worry too much- these preemies may just be "little bits" in general. You guys continue to be in my prayers.

  2. Way to go Maggie and Lee for all the great steps taken in the last couple of months!!!! Will be praying for the MRI today for sure. Mary Lawrence looked precious at her first day of school and at soccer, she is growing so fast!

  3. Thinking of you all and especially Maggie! Hoping her MRI went well!! You are such wonderful parents!! Praying for your strength and peace. Mary Lawrence is so precious too!! I love the pics from her first day of school!!
    Love, Leslie Blanchard

  4. Hi, Lee,
    I hope you are doing ok. I have been praying for you and was just checking to see how the MRI went. Maggie looks great in her recent pictures and I am so glad the homemade food is making the tube better. Good for you for not giving up! It looks like Virginia is getting a g-tube, too, so I may call you for some advice.