Thursday, April 29, 2010

Come Walk With Us!

The March Of Dimes March For Babies is this Saturday, May 1st.

Schedule of events

8 to 9:30 a.m.Registration/check-in- Turn in funds and get everything you need to walk. Don't miss entertainment by Radio Disney's Rockin' Road Crew at the KC Live! stage. Breakfast and coffee will also be served.

9:30 a.m. Opening ceremonies at the KC Live Stage!

10:00 a.m.March for Babies begins at the corner of Walnut St. and E. Truman Rd.

After the walk: When you return, enjoy lunch generously donated by Cosentino's and live entertainment by Parachute Adams. Stroll through Baby Boulevard and check out the Kids' Area for bounce houses, carnival games, arts and crafts and more!

Where To Park?

In addition to street parking, three garages will offer complimentary parking for March for Babies:

  • Power & Light District Garage - entrance on 13th between Grand and Walnut.
  • H&R Block Garage - entrance on Main between 13th & 14th and on Walnut between 13th & 14th
  • Cosentino's and Midland Theater Garage - entrance on Main between 12th & 13th and on Walnut between 12th & 13th

You can bring your dog.

The walk will happen rain or shine.

When you get there Sat. morning go straight to registration. There are 2 registration tables 1 at 13th and Grand and the other at 14th and Walnut. The March Of Dimes recommends a $22 donation for walking. (Don't let that number stop you though, give whatever you can.) After you are registered then come find us in the Family Team's Tent on Grand between 13th and 14th. If you ordered a t-shirt from Rachael she'll have it there for you and you can pay her for it then.

Jimmie can't wait to see you all!! He'll be there with his big blues eyes and his big smile! (-:

Unfortunately Jimmie has dropped about 7 ozs this past week. He's been sick and not eating well. He is just so skinny. At this point he's so lacking in body fat that he's chilling really easily. Long term concerns over battling low weight for a long period of time center around the development of his organs. He's not needing to be hospitalized or anything, but he does need to do better. He just loses weight so fast and so easily. He is back under 15 pounds again. So they are adding back another tube feed and trying to find a fortifier that doesn't cause Jimmie to puke. Pray that this little tiny guy can put on some fat. Fat prayers are what we need! If you've followed Jimmie from the beginning you'll remember those! (-:

Thank you for praying!


Sunday, April 25, 2010

Silver Dollar City & Sick...

Justin and Rachael took Jimmie and went down with Rod and Kathy to stay for the weekend at their vacation home on Tablerock Lake. It was very hard for Rachael to do this. She was having a fair bit of anxiety about being away from home, changing things up and stepping away from their routine. Unfortunately there is also a new virus going around amongst the family and Jimmie was starting to show signs of coming down with it Thursday.

So far their visit has not been the disaster the last one was. More like Jimmie's first visit to Tablerock Lake when he was first starting his feeding issues.

He is sick. He's run some low grade fevers, has a cough and isn't eating very well. Rachael suspects he has a sore throat. He is drinking well though so that is encouraging. I'll share more about the fun things they've done this weekend when I get the pictures from Rachael to go with it. (-:

Pray that they have a safe trip home later this afternoon and that Jimmie eats better and feels better VERY soon!


Monday, April 19, 2010


Gracie Anne’s Story

In honor of her 2nd birthday.

Rachael found out she was pregnant with their first child in the fall of 2007. Her due date would be August 14th 2008. Everything was routine for the first trimester. She even had a triple screen blood test done to test for abnormalities- those results came back normal. At around 21 weeks she had her first ultrasound. Of course we were so excited to find out whether the baby was a girl or a boy. I hate recalling this, but the memory will never leave me. Rachael called and I answered, “So??? In a very excited voice…” there was silence and sobs… I was in such a state of shock I made Rachael repeat the horrible news. “Something is very wrong with the baby… a cystic mass… can’t tell if it’s a boy or a girl… will know more in 4 days when we see the specialist…”

Four days later we all (Mom, Dad, Rod, Kathy, myself and a dear friend Michelle..) went with Rachael and Justin for the follow up scan with the specialist. As the scan progressed I knew she would not live. I heard 2 vessel cord, possible heart defects, fluid in the chest and abdomen, cystic hygromas… I had studied up a bit and knew that these things all together were fatal. So as he turned the lights on and gathered us all around Rachael and Justin I knew what he was going to say. I think Rachael knew too.

We were told, “She will not live. She’s too sick. These hygromas have caused a disastrous back up of fluid in her whole body. Because of this fluid her lungs and other organs cannot form properly. Her heart looks pretty sick and may also have defects. All of these things together point towards a syndrome or chromosomal defect. He mentioned Turners Syndrome and Trisomy 18. She might die before she is born, but if she is born alive there is no way to help her.” Rachael was offered the option of inducing labor/aborting the pregnancy. She refused.. Not while her heart is still beating… We found out later (after her birth) that Gracie did have Turner’s Syndrome.

Rachael and Justin were living with Rod and Kathy (Justin’s parents). They had just finished building their home and had planned to move in that day. They had also just celebrated there 1 year wedding anniversary.

After we all held each other and cried. Rachael wiped her tears and said, “ok-- lets go move..” Life goes on… Even when you cannot comprehend how. So family and friends gathered around and helped move Rachael and Justin into their new home that evening.

The next 2 weeks we cried, prayed, talked to Rachael’s belly and tried to take it one day at a time. Rachael received a word from God that her baby was a girl and that her name was Grace.

One of the things I wrestled with and I know Rachael did as well, was the thought that Gracie was in pain. It was pretty unbearable to think of her suffering. All we could do was call on Jesus for mercy for her. I began to realize that pain and suffering did not have to be this horrific thing. I was struck by Jesus’ and His suffering on the cross for us, His redemption and His resurrection. He suffered greatly and now sits at the right hand of the Father. I realized that to live means to suffer. To live means to have pain. We all suffer, we all have pain and we all die- eventually. As a mother you think you want to spare your children pain, but obviously it’s not possible- they will hurt. The answer to our pain is of course Love. As Rachael shared after Gracie died:

“Through Gracie God has given me this: that all we have to do is chose to love in all situations. Love our selves, love others, love and know we are loved. If we love, we don't fear, hate, have bitterness, self pity, anger, or envy. The by products of love are Joy and Peace! And I realized that I need to love. I did love Gracie and still do and it is beautiful that God gave me that. If we love in all situations only good will come of it. Nothing evil ever came out of love. When I start to have the negative emotions I remember that I love(ed) her. Just LOVE. This was the verse I used at our wedding it means so much more to me now.

“Love bears all things
believes all things
hopes all things
endures all things
Love never ends”

Love endures all things. Love endures all pain. Love endures all suffering. Through Jesus, through His suffering, His LOVE we have the hope of the resurrection- Love never ends.

Over those 2 weeks Gracie’s movement became less and less. She weakened and Rachael knew in her heart that she was dying. April 17th she felt Gracie kick for the last time. She waited all that day to feel her little girl she waited all through the night and into the next morning . . . nothing . . . So she called Justin at work and asked him to meet her at the hospital . . . She just knew . . . We met them there. The tech put the ultrasound wand on to her belly and there she was . . . still . . . The flutter of her heart had stopped. We cried and it was then Rachael smiled through her tears and looked right at me and said, “It’s okay . . . It’s okay..”

They started the induction process that afternoon. Rachael suffered greatly. She was in agony physically and that with her emotional pain was just too much for us to bear. We all begged her to get an epidural and she refused for a long time. Later she explained that pain was all she had, it was her part of this experience with her baby and she didn’t want to dull it. She had a hard time explaining what she meant, but I understood. It just hurt the rest of us so much to see her suffering so intensely. Eventually she gave in, probably for Justin and the rest of us. The night went on and on and on… I went home to feed my baby and was called back as it was time for Rachael to push.

We were all nervous about how Gracie would look. It was hard to have dread or fear about seeing a precious baby, but that’s just the reality of it. We needn’t have been scared. I know there were things about Gracie that were very hard to see, but all I saw was beauty, it’s all I remember. Rachael has expressed the same. She was beautiful. She seemed very peaceful and graceful. She was 1 pound 8 oz and 10 inches long. We all held her, Rachael and Justin spent some time alone together with her and then we watched the nurse walk out with her.

A nurse that had taken care of Rachael the day before, but had to leave before Rachael gave birth- came into the room and said, "I saw Gracie- she’s beautiful!" That meant so much to Rachael. Patti from Alexandra’s House was truly an Angel to us that day and the 2 weeks before. Her quiet, faithful and joyful spirit was so comforting. She brought a dress, donated Gracie’s coffin and shared her special view of babies like Gracie. She feels they are very special souls and those who are touched by ones such as Gracie are very blessed. Her many years of serving people who are losing their babies have made her a rare and transcendent sort of beautiful. You believe her words because she embodies what she believes.

We buried Gracie a few days later at the foot of Justin’s Grandpa Gravitt. He had 4 boys and he had always wanted a little girl. So Gracie rests with him.

The pain of losing Gracie stays the same. The time in between my sufferings is lengthening, but the depth of my pain remains. Rachael feels the same. I don’t believe that will ever change in this life. As I have said- there is a sweetness to that pain as it is all I’ve ever known with Gracie. I know she is at peace. I believe she still exists. I believe we will be together again.

Love bears all things
Love believes all things
Love hopes all things
Love endures all things

Love never ends

We love you Gracie! Always and forever,
Auntie Amber

Saturday, April 17, 2010

My First Visit To The Zoo- By Jimmie Gravitt

The rain did go away and I got to visit the Zoo yesterday for the very first time.

Uncle David, Auntie Amber and cousin's Cole and McKenna came...

AND Grandpa and Grandma Gravitt!

I started out munchin on a chicken nugget.

I rolled in my stroller just like my cousins.

"Most" of the animals were cool. And I was "mostly" cool about them.

This pig thing was alright...

See I'm not scared..

This is me lookin at the pacing tiger.

Nah- tigers don't phase me.

Wow what's that? A Rhino..

Hmmm interesting...

Ooooo what's that over there? A Gorilla!

I could take him!

Yes I could!!

Now those guys are HUGE!

But- do the Elephants give me pause?


Sure I'll pet a goat... No prob...

Yeah.. I got bored lookin at the enormous python. That didn't scare me at all.

But . . . as it turns out . . . I'm not superman . . .

I'm not scared by much..

I had blood drawn the other day without crying..

I've walked right into the middle of a sprinkler and stood there getting soaked with cold water. That didn't upset me...

Mom can't put me in my play yard because I climb the sides and fall out.. That's exciting!

I wasn't scared of the lions or tigers or elephants or snakes or monkeys or anything else..

The ONE thing that REALLY and I mean REALLY freaked me out was...


Anytime I was looking at a bird exhibit I ended up screaming..

In TERROR... Auntie thinks it's hilarious cause evidently my mom had an unnatural fear of birds when she was little too. So mean old Auntie Amber laughed while I cried. And apparently as proved by the picture above mom thought it was pretty funny too. Mom!! How could you?!

Daddy made it all better by giving me the best seat in the house!

I'm pretty sure my dad will "make you pay" if you tease me about the birds.

So don't even go there k..

It's a sensitive subject.. (-:

Besides the whole bird fiasco I had a great day.

Once when Mom let me down and I made a beeline for my Grandpa!

I walk pretty much everywhere now. Crawling is uncool.

Auntie says since Easter I've grown into a toddler.

She keeps goin on and on bout how I'm not a baby anymore.

Duh- Auntie!!

Course I'm not a baby anymore.

Anyway- back to Grandpa, he loves me! We are best friends!

We played at a playground for a few minutes.

Please excuse the food all over my chin. Every time I look up and open my mouth my mom shoves somethin in.

I love these tunnels..

These cute little air holes are the size of my head. Although I am big, I'm still kinda small.

At the end of the day Grandpa and I rode the carousel. I had my tired crazy eyes on by then. (-:

When we got home, mommy plopped me in the kitchen sink for a bath. Whew! What a day.

My first visit to the Zoo was a real good time and I'm a real good boy!

Jimmie Jim Jim

Friday, April 16, 2010


"Rain rain go away, come again another day

Away away, cause if you do Jimmie gets to visit the ZOO!" (-:

Monday, April 12, 2010

Dear Jimmie- Happy 14th Month Birthday

Dear Jimmie,

Happy 14th Month Birthday!

This you right after you were born.

This is you today!

Look at how you have grown next to your Rottweiler Puppy!

Look at how you've grown in your father's hands!

Here is your "Watch Me Grow" slide show.

This month you've gained 14 1/2 ounces!! We are glad you gained so much because you've struggled with moving backwards lately. You are now 15lbs 1 oz. Your growth is pretty slow on your chart, but you *are* growing and this while taking in all your nutrition by mouth except for 1 feed that your mommy puts in your tube at night while you are sleeping.

You are 27 1/2 inches long and your head circumference is 17 1/8 inches!

You have 111 followers on your blog!

Your "Faithfulness" Video Montage has been viewed 8,901 times. That's 695 times this month!

Your "Jimmie's Wonderful World" Montage has been viewed 807 times. And your "High Places" Video Montage has been viewed 455 times!

Your blog has been viewed 5,019 times this month for a total of 87,470 hits! You have a lot of very cool people who love to check on your progress Jimmie.

As far as your eating goes you are only getting 1 tube feed in a 24 hour period! You have really started drinking liquids this month Jimmie!! Wooooooohooooooo!!! Every once in a while if you've done particularly well on your fluid intake your mommy will skip the tube feed completely! Your mommy has decided to try to help her sanity by not counting every ml and calorie you take in. I think this is a good decision. So we don't know for sure how much you are taking in, but we do know that you are doing better and better drinking from your sippy cup. You drink from your mom's water bottle too throughout the day. We are just praying that you move forward with your growth Jimmie. Even if it's slow as long as you are moving forward-- we'll take it! You have been fairly consistent eating solids this month as well. You are showing a preference for big boy food now. You'd much rather eat pieces of food then puree's. You love eating little bites off mommy's or daddy's plate too.

In fact you are doing so well that your awesome OT Ms. C. has released you from her care. You are now being followed only by your Developmental Pediatrician Dr. H. your regular Pediatrician Dr. S. and your nutritionist and OT from First Steps. Your Nutritionist and Dr. H. will make the decision when to remove your g-tube button. I don't think it will be too long Jimmie. No one wants to remove it before you are ready though so I suspect you'll have to show a lot of consistency in both intake and growth.

You have 2 teeth Jimmie and are working on cutting a 3rd!

You are not talking much. You are babbling some, but you are showing some signs of delay in this area of development. Nobody is very concerned yet. At the end of May you will be 1 years old "developmentally" and at that point you'll probably start some speech therapy for good measure.

You are choosing to walk rather than crawl more and more now. You have not given up crawling entirely though. You are the fastest crawler I have ever seen. Here is a video we posted of you a couple weeks ago!

This is the first month since your 8th month that you did not fight some sort of virus. You had 5 different sicknesses over the winter. Two of them were associated with an aggressive tube weaning attempt. All in all we think you have done outstanding for your first cold and flu season outside of the hospital. You have handled these virus's like a totally normal healthy child. We do not take this for granted. Most micro-preemies are re-hospitalized in their first year with sickness. The only reason you have frequented the hospital is because of your eating issues! This is amazing Jimmie. Your immune system and your lungs are phenomenal for a 24 weeker.

Praise God!

This month you have enjoyed the warmer weather. You have been going to the park near your home with your mommy and you've also visited a park in town and played with friends and cousins.

You are such a happy boy Jimmie!

You celebrated Easter this year at church and then you visited Grandma and Grandpa Gravitt and then Ma and Pa! You had a fun day and as always were SUPER CUTE!!

Four months ago we were all trying to come to terms with the reality that a g-tube was in your future. It was a really hard decision for your momma. She fought so hard for you Jimmie. She had really hoped to avoid that outcome for you. As we all worked to accept this I wrote, "We are hopeful that this g-tube will be your friend. That it will clear the way for some healing physically as well as psychologically."

Praise God this has been the case Jimmie. After a few weeks of healing from the surgery. You began to thrive. Slowly but surely you began to eat and then you began to drink. Your mom has been very wise in her use of the g-tube. As usual she has done things her own way... (-: Most of the time you have not been aware that you are eating through the tube which is very good for you psychologically. It helps ensure that you will not be dependent emotionally on the tube. It is because you have done so well that this has been possible. Getting that pesky NG tube out of your nose and throat without completely starving you has been a huge help. We knew you could do it Jimmie and we are so very very proud of you- you wonderful, beautiful brave little boy!!

Keep up the hard work buddy and grow grow grow!

You are a warrior Jimmie!

I'll love you forever,
Auntie Amber