what's going on with Grace?

I know I haven't posted much recently...I have had a hard time justifying sharing my frustrations and disappointments (that I have been feeling concerning Grace and her development) enough to write while heart friends are losing their earthly battles, receiving terrible news, and just plain struggling more than what seems fair. It is so hard to see so many children struggle and go through more than what most adults go through in their entire lives. These little children truly are amazing and very special spirits that teach us oh so much.

I recently had a great conversation with one of Gracie's physical therapists that put things into perspective for me. We decided that Grace is more like a six month old developmentally, then she is a 14 month old. Really, Grace was so sick until after her second surgery in April that she didn't have energy or strength to focus on much more than healing her body.

We had an appointment with cardiology yesterday and Grace is doing relatively well---we just need to get her off of some of her diuretics, especially since they are keeping her from even being refereed to GI about placing a G-tube. So what we are planning on doing is weaning her off of her afternoon dose of bumex, if by the end of the week she responds with increase oxygen needs, coughing, etc. we will get her into the cath lab soon to coil off some more collagulants (enlarged veins and arteries). But if she responds well, then we will continue to wean off of her other diuretics.

Gracie is now 30 inches long and 15lbs, so she is still her long skinny self. Dr. Jou wants me to try increasing her calorie content again from 24 kcal, to 27 kcal. I honestly don't think she will tolerate it but who knows. I'm anxious to get a g-tube placed, I've heard that kiddos just gain more than with the NG tube.

Gracie is rolling all over the living room these days. Its fun to see her actually try to go and get something that she wants. And if she can't reach it, she will let us know. Grace has started vocalizing so much more now, she just says ahhhhhhhhhh, dahhhhhhhhh, ahhhhhhhh, dahhhhh over and over again. I love it! We are working so hard on mastering sitting, Grace hates it, but is doing quite well. So far she has sat up for two minutes straight before tumbling over.

Prayers needed

About an hour ago I read a devastating update on a dear sweet family---The Stricklands. Their little miracle Mason is in heart failure and just found out that he is not a candidate for heart transplant. I went left my computer and attempted to do some household chores just to find myself literally sick to my stomach for this sweet family and their little one.

Please pray for them to feel comfort, peace and direction. Please pray that they will enjoy every day they have left with Mason and that they will be strengthened more than ever before.

PT exercises and messy eating

I finally found an exersaucer I thought would be great for Gracie, I just had to wait to find a good deal on KSL. People were asking anywhere from $75-$50, but holding out paid off and I got it for $30. I had to spend almost 2 1/2 hours cleaning it but once it was ready, Gracie loved it! It has a seat that rotates 360 degrees, and that also moves back and forth on a track when she finally gets strength in her legs. The floor of the saucer is piano keys that make music and light the keyboard on top up. I'm hoping that she will gain trunk strength and build up strength in her leg muscles too.

I love the last picture, though Jason hates it, but it makes me laugh so much. Gracie is so funny.

The hair is so funny because she pulled out her ponytail.

Gracie usually doesn't mind sitting up, but today she just hated it---oh well, she still needs to do the exercises.

Gracie still isn't eating much but she loves to play with her food. Today it was bananas and cookies. I was nieve enough to think that she actually ate some of the food she had in her mouth, but she was storing it in her cheek. I took her up for a bath and when I laid her down to undress her she started gagging and chocking....

I love her silly and michevious looks

Fun with my nieces

We've been having a lot of fun with my nieces since they have been here. We've gone to the Draper Fun Center, drove the Alpine loop and have gone to Boondocks so far. We still have a lot of fun planned---I think tomorrow we are going to hike and have a fire and smores tomorrow and see what else comes our way.

Cammie---these pictures are for you.

We started hiking, but the girls decided they needed better shoes!

Fun Center Fun

Just hanging out at home.

Sweet Bridger

We just heard that one of our sweet heart friends lost is battle today and returned to heaven. Please remember this sweet family in your prayers that they will be comforted and strengthened as they mourn the loss of their sweet, beautiful boy.




Hold you sweet little ones a little tighter tonight and enjoy every moment you have with them. Wether healthy or sick, life is so fragile and such a gift for every moment we can hold and love our loved ones.

Liberty Park

I have a new favorite park, in fact up till now I really never like any of the parks here in Utah. I'm use to huge parks with so much to do being from NY, but finally I have found a park that I love and enjoyed so much, even if it was only for 3 hours. That park is Liberty Park, up in SLC. I've wanted to go explore it for quite some time, so as I planned an outing with my girls and my nieces. I thought today would be a perfect day to go, especially since temps were almost 20 degrees cooler.

We packed a picnic and headed out. I forgot about the fires in the valley and seriously thought about turning around or finding an indoor activity in fear that the air quality would be terribly detrimental to Gracie and her health. But I decided to go and just watch her cues and I'm glad I did because it was such a wonderful day and the air actually wasn't that bad once we got out of Utah Valley.

Morgan played on the playground for a good hour and loved it. Normally she gets bored fast, but there was too much to explore and enjoy. Her favorite part was the toddler area where she could "cook;" I have such a girly girl. Unfortunately I forgot to pull out my camera, so no cute picture at the playground.

(I couldn't choose my favorite, I tend to have that problem.)

We then went and had our lunch. I laid a blanket on the ground for Grace and she was as happy as could be. She rolled and talked and just was so content watching the leaves and being outside. I love that she loves to be outside, very rarely does she ever cry and get upset when we are out playing.

My nieces seemed rather bored so we roamed until we found the peddle boats. They took Morgan and went around the pond a couple of times and really enjoyed themselves. If you look at the pictures you will notice a random little boy in them. Well what happened is, we waited in line for 20 minutes and all of a sudden this lady who was waiting with said boy totally cut us and tried to get a free ride. I wasn't going to have that, so I gladly announced that the boat could only hold four and we had three and were waiting before them. As the girls were getting in, she asked if her son could at least ride in the empty seat. I couldn't say no with him there so I said sure, as long as she felt comfortable. I was shocked that she would be so bold to mooch a free ride from us that I promptly called Jason and told him what had happened. Well when they got off the boat she offered to give me a couple of dollars, because she was now able to save her ticket for another day. I firmly declined, because I then felt guilty for all of my negative and frustrated thoughts toward this woman. I'm sure you all are happy I just shared that long story.

Quick update

It has been a while since I posted and thought that I would just update really quick. Gracie is doing well...finallly. When we were discharged from the hospital Grace was still not quite herself, and then a couple of days later came down with a bad cold or something and ended up needing 2 liters of oxygen for several days. It wasn't until about five days ago that she finally started playing and acting more like herself. I'm just grateful that she is more playful and tolerating outings again.

Morgan is great, healthy and happy like always. She is a sweetheart and always great at just going with the flow. I love that she is not despising Grace and acting out.

My nieces are visiting for three and a half weeks, they are 13 and 14, so we are trying to do lots of fun free things that work around Gracie's schedule. Having teenagers around is giving me an insight into the future---the good, the bad, and the ugly :)

Jason is doing well, he is loving the summer days and low mail count---it makes for very short days, even if they are scorchers. It will be hard come October when the mail starts to pick up again.