Braces and food

Maggie is getting leg braces to help with her walking since her legs are still tight related to my pregnancy. She was so good getting casted in the office today...













I don't know why but Maggie is losing weight again. The hard thing about having a g-tube child is figuring out how many calories they are burning so you make sure to give them enough through their tube. It's a mystery to us that she's losing again because she's not throwing up....but I'm hoping it's because she is more active....

Right now I'm trying to figure out how to increase the calories of her formula without making too much volume or making it too hard to digest. Ive tried adding whole milk and even pure whipping cream and both just ended up tearing up her sensitive stomach. Increased olive oil just goes right through her and makes her have a lot of dirty diapers. It really is exhausting to constantly think about something related to your child's health, especially when it pertains to weight. Sometimes I just want to throw a hostess cupcake in the blender, but that'd probably make her sick, too! Oh well, I'll keep trying to find the perfect ingredient to get a little chub on my sweet baby...

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Rustic French "Bebe" Shower Luncheon

I had the honor of hosting a baby shower this morning for my friend Carrie Garcia. After traveling this week, I knew that I probably coulldn't host a shower at my home (and not be totally stressed out about it!). So I decided to do a baby shower luncheon. I mean, nothing goes better with pregnancy than absolutely divine food, right?! It was at my favorite neighborhood restaurant called Rise No 1, which I describe as Rustic French. Carrie and J.R. don't know the sex of their baby, so I went with greens and shades of lavender to go with our rustic French countryside theme.

What a beautiful day for a shower!

Invitation by Original Ink Designs

You can't try too hard when you are doing flowers for a party like this....I love the "just picked" look

I brought some of the girls' silver pieces to make it feel like a baby shower, and not a bridal shower!

Our menu

Mmmm...souffles!

After our decadent dessert souffles I didn't want to do cookies or candy for favors, so I did my favorite lavendar and honey hand creme from Anthropologie.

What a fun group!

Carrie and me

My little helper!

I just couldn't resist taking this photo...she dressed herself today, of course.

Updates

The MRI results came back yesterday after a week of painful waiting. Thankfully there was no change from last year. Praise God for that great news.

We also had a good trip to Atlanta. We met with a renowned surgeon and really liked what he had to say. He didn't promise me he could cure her 100% (as so many have wrongly said before), but he said we've done everything else for maggie we possibly could. And surgery is really the only option left. He felt for sure Maggie's severity and unique type of torticollis has baffled doctors because it is due to the rare condition I had during pregnancy.

Now we have some serious praying to do. Unfortunately nothing is ever clear cut with Maggie, and rarely do two doctors agree on what to do. So it makes decision- making very difficult, especially when we've had two surgeries gone wrong in our family. But I had a good feeling about this surgeon, and feel like we may just be on the right path, medically speaking. Praying that we are...

Justin and I are so thankful to the Gaddis family who shuttled Maggie and I around Atlanta and loved and fed us in between. What a treat for us both!

Thank you for praying this week and continuing to pray...




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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.