Thursday, February 25, 2010

Developmental Update

Jimmie went and saw his Developmental Pediatrician Dr. H. this week. The report is mostly good. Jimmie is doing awesome eating solids and is even starting to make some headway with taking liquids by mouth. Progress with this is slow, but there is forward progress.

Jimmie's nutritionist has worked with Rachael to create a new plan for Jimmie's nutrition. Basically Jimmie will take in almost all of his nutrition by mouth. He will be fed solids (by mouth) 4 times a day. This includes smoothies and liquid from a straw and/or a sippy cup. He'll receive only 3 feeding of breast milk through his g-tube. Those feedings will be in the late afternoon and evening before bed. They feel this new plan is possible because Jimmie has been eating so well and he gained almost a pound in the last 2 weeks!! He's is now around 14 1/2 pounds again. That is about what he weighed before he lost weight from the g-tube surgery and that bout with the stomach flu.

Physically Jimmie is way ahead. He is pretty much on par with his *actual* age of a year old instead of his developmental age of 9 months. This is just astounding considering how far he's come. He has taken a step or two on his own, but he crawls so fast and gets around so well that Rachael feels it will be a while before he chooses to walk simply because it's slow and Jimmie has an agenda that can't wait! (-;

Other than the fact that Jimmie still needs that g-tube for liquid intake the only other concern that has recently started making blips in Rachael's radar is speech. Jimmie is not babbling. At this point Dr. H. feels he should be. Jimmie does not say, "ma ma ma" "da da da" "ba ba ba". He mostly just squeals, screams, makes gutteral sounds in his throat and has some nasal resonance (blowing air with a little sound out of his nose). The first thing Dr. H. has recommended is to have Jimmie's hearing checked. Jimmie did pass his hearing test right before he was released from the NICU. It is clear that he can hear, but there could be high end or low end hearing loss that could effect his speech. We doubt it, but when speech is in question- a hearing issue is the first thing to be ruled out.

My daughter McKenna has been diagnosed with a speech disorder called Verbal Dyspraxia. Dr. H. knows about this and mentioned some of the latest research on this disorder is showing that a paticular gene defect has been found. This defect could be inherited... I'm going to be doing more research on this myself and possibly get my daughter tested. We are really hoping Jimmie does not have this same disorder and is just a bit delayed because of his prematurity. But if it is something a bit more serious we are ready to work hard and overcome.

Join us in prayer for Jimmie's ability to take in liquid and also that he would start babbling and that speech would not be a big issue. This little guy has worked so hard to get this far and it would be so great to *not* have to watch him struggle for speech. Believe me though we have perspective. We remain so grateful and in awe of how fortunate we are with Jimmie . . you know . . . considering . .

Love,
Amber

Monday, February 22, 2010

First Step, Eating And Jimmie's Dance

Jimmie took his first step Saturday evening! He was at our Grandparents house for February birthday celebrations. He was standing by me and facing his momma. He was standing there without holding anything and you could really see that he was psyching himself up and then he did IT! He took a step. All of us who were in there cheered while Rachael swept him up for a hug and he grinned. Go Jimmie go! (-:

Rachael sent me a summary of a typical day for Jimmie eating wise.

In Rachael's words:

"I make my own baby food and freeze it in ice cube trays. I always add either olive oil or butter for extra calories.

6:30 am 2 1/2 cubes of sweet potatoes, 1/4 banana, and rice puffs

8:00am tube fed 130 mils breast milk (no fortifier)

11:00am 2 1/2 tablespoons protein smoothie, 1 cube carrots, and rice puffs, tube fed 120 mils breast milk

2:00pm 2 table spoons apple sauce, 1/4 banana, and rice puffs, tube fed 120 mils breast milk

5:00pm 1 cube peas, 1 cube carrots, 2 teaspoons turkey. 2 tablespoons oatmeal, 6 mini chocolate chips.

5:30pm tube fed 108 mils breast milk

7:00pm a few bites of my black beans, rice, and guacamole. (he wanted it)

8:00pm tube fed 130 mils beast milk."

I think she still does at tube feed at 2am as well . . .

Rachael is still faithfully pumping her breast milk for Jimmie. This has been such a labor of love and a sacrifice to pump around the clock for over a year now to supply Jimmie with the absolute best nourishment he could have. I am in awe of her dedication. She is starting to see the light at the end of the tunnel though. Maybe soon Jimmie will be eating and drinking well enough and tolerating enough variety that Rach will be able to start weaning in earnest.

As you can see Jimmie is doing an awesome job eating solids. He has kept up this pace for a couple weeks now. The OT Dr. C thinks that in a matter of months his liquid intake by mouth will start catching up. Rachael is having to guess at what she gives him is his g-tube a lot of the time depending on how much he has just eaten. She has a base number to keep him hydrated and then she just tries to guess. If she over feeds him he pukes and that is not helpful. Keep praying that Jimmie will start sucking on a straw or his sippy soon. It will be such a dream for Rach and Justin when the day comes that Jimmie can self regulate his liquid intake safely and they don't need to tube feed anymore.

Jimmie has cut his first tooth and has a second one coming in soon!

I'll finish with the beautiful dance that our students did as a surprise for Rachael in honor of Jimmie's birthday!



Love,
Amber

Thursday, February 18, 2010

My 1st Birthday- By Jimmie Gravitt

Hi everybody,

Guess what?? I'm 1 year old! I guess this is a big deal cause boy did we party. Auntie says it is a big deal always, but especially for me because of how far I've come in my first year of life.

At this party of mine there were lots of gifts for me to open.





I was so big . . . I started unwrapping the gifts all by myself.


Mommy only helped me just a little bit.


Just like at Christmas, I was still super excited about the wrapping and the tissue paper.


But I did let the toys distract me from the really cool stuff a little bit.


My Grandpa and Grandma Gravitt got me the classic Little Tykes coup car. I guess my Grandma gave Grandpa the hardest time forever because he never got my daddy one of these.

HA- so Grandpa knew what he must get me. I was nice and I let my cousin Cole ride in it.



I got some super cool shoes from Great Aunt Karen and Uncle Kevin.




I stared down my new stuffed puppy, let him know who's boss.


I used my cousin for balance as I stood up all by myself. He owed me- I let him ride in my car.




My Grandpa helped me fly over all my new toys.


My Pa and Ma got me a real live blue ukulele!


I was very curious about how it worked.


Pa showed me . . .


Pa sure is good at it.


My Auntie Amber acted crazy as usual. She just goes bonkers when she sees little ole me.


Somethin about how cute I am . . .


And how kissable I am . . .


And I guess that causes her to make funny faces, crazy noises, squeeze and kiss me like she does.


I got a lion walker! This lion will need me to take him for a walk every single day. I think I can try to fit that in to my schedule.


This 4 wheeler I got for Christmas. Look at me standin all by myself. I'm gonna be walkin on my own 2 feet soon.


So I guess for birthdays there is cake and singing! My ice cream cake had a Monster Truck on it!!




Everyone insisted I pose with the cake.


I was very bored by this.




I thought I'd liven things up . . .


. . . so I made a grab for that yummy lookin cake.


All this fluffy blue stuff came off on my hands.


It felt cool . .


It smelled sweet . .


And boy did it taste yummy!!!


All in all it was an awesome party. Mommy was thrilled that I got to have a birthday party just like any other 1 year old. I did everything just like anybody else. I even tore apart and ate my own little chocolate cake.



This meant so much to my mommy who could not have dreamed this 1 year ago when I was born so dangerously early.

I got so messy daddy and Grandma had to strip me down to my skivvies to clean me up.




See that little plastic thing on my belly? That's my g-tube button. I'm fixin to eat and drink well enough soon so I won't even need that anymore.


You wanna know somethin really crazy. My mommy says I'm not actually 1 year old until May 28th! WHAT?? Yeah- I guess that was when I was supposed to come out of mommy's tummy.

Does this mean I get 2 birthday parties mom???

Cause that would be cool! (-:

Over and out,
Jimmie Jim Jim

Monday, February 15, 2010

Birthday Party (part 1)

Happy Birthday to you . . . Happy Birthday to you . . . Happy Birthday Dear Jimmie . . . Happy Birthday to you . . . AAAAAAA don't touch the candle!!!

video

Jimmie's hands are lightning fast. He already has blue frosting on his face because he had grabbed the ice cream cake when they were posing him with it. Go Jimmie go!

Lots of pictures and more about his wonderful party coming soon!

Love,
Amber

P.S. Jimmie is eating like you wouldn't believe lately. His drinking is improving little bit by little bit as well, which is very encouraging. Rachael is pretty sure that getting the NG out of his nose and throat has helped immensely.

Thursday, February 11, 2010

Dear Jimmie- Happy 1st Birthday! (part 2)

Dear Jimmie,

Happy 1 year birthday!

This is you right after you were born.

This is you at 1 month.

This is you at 2 months.

This is you at 3 months.

This is you at 4 months.

This is you at 5 months.

This is you at 6 months.

This is you at 7 months.

This is you at 8 months.

This you at 9 months.

This is you at 10 months.

This is you at 11 months.

And this is you today!


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














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












When your mommy was in the hospital on bedrest one of her favorite cd's she listened to was by Fernando Ortega. Whenever she plays that cd now and the song "Come Thou Fount" comes on, you stop whatever you are doing, sit quietly and listen to the whole thing! So I made a special collage of video clips in honor of your first year- set to your special song.



This month:

You have lost a 1/2 pound. )-: You are 13 lbs 8 ounces. You had a bit of a rough month trying to gain weight because of your g-tube surgery and the stomach flu.

You are 27 1/8 inches long! You've gained 1/8 inch

Your head circumference is 17 inches around!

Your mommy and daddy got some very exciting news today from your awesome OT Dr. C. Your mommy kept your appointment for today even though it’s your birthday. She is very glad she did. After today’s assessment Dr. C. stated that you were doing so well that she doesn’t feel she needs to see you regularly any more. AND in her (very impressive) experience when kids have reached the point you are at with your eating it’s only a matter of a few months (at most) before they start taking in liquids consistently! After delivering this news she smiled and said, “Happy birthday Jimmie!” Your mommy and daddy are so very encouraged and uplifted with this news. What an awesome start to a day that has a lot of mixed emotions that come with the memories. You deserve some high fives Jimmie because you have been through so much and worked so hard for this. So have your mommy and daddy. We are looking forward to seeing this excellent prognosis happen for you in the next few months.

Your diet has expanded a bit this month. The "candida diet" part of this has been relaxed a bit. Some sugar (in very small amounts and mostly natural) has been added. You enjoy fruit smoothies with olive oil and organic teething biscuits among other things.

Physically you are way ahead. You will be walking on your own anytime. You cruise around the furniture and frequently let go to stand all on your own!

Yesterday some of our (me and your mommy's) long time dance students, young women who are very precious to us . . . delivered a surprise during classes. They had picked out a beautiful (lullaby like) song and had choreographed and rehearsed a sweet dance. They performed it for us in honor of Jimmie’s birthday. It was so special and so unbelievably sweet we could not hold in the tears. I’m hoping to post a video of this soon.

You have 112 followers on your blog! That’s 5 more than last month.

Your Faithfulness Video Montage has been viewed 7482 times. That's 772 views this month!

Your "Jimmie's Wonderful World" montage has been viewed 749 times! That's 41 times this month.

Your blog has been viewed 7,924 times this month for a total of 77,201 hits! You have a lot of very cool people who love to check on your progress Jimmie.

This month has had quite a few ups and downs . . .

You attended your uncle Eric’s wedding! You woke up in an unfamiliar church and started screaming. Your mommy was a bridesmaid so your daddy had to take you out. You had fun partying later though.

You had surgery to have a g-tube put into your belly.







This allowed for the NG to come out of your nose and throat. The surgery went well. But you were pretty upset by the whole thing. You were so much more aware and more mature this time, so this procedure and hospitalization seemed to affect you more than in the past.

You got the stomach flu. That was really frustrating for your mommy who has been working so hard to try to get you back on track with your weight gain since your surgery.

You attended another wedding! A long time friend of the family... This time you didn’t scream, but your mommy still held you out in the foyer just in case. You didn’t go to that reception and party- instead you went and hung out with Grandpa Rod.

You also went to the house warming party for your pastor. There were lots of other kids there who loved watching you crawl and play.

I am in such awe that you are already 1 year old Jimmie! What is even more awe inspiring is the details of your first year. We are frequently reminded by doctors, nurses and friends who have experience with micro-preemies how fortunate we truly are. Being born 15 weeks early, more often then not, creates such devastating physical trauma that there is some sort of permanent physical and developmental damage. Sometimes it's hard for me to wrap my head around how this was *not* the case for you. We will never take this for granted. The miracle of your journey is fresh and new to me every morning. It fills me, to the brim with thankfulness and a sense of awe every time I think, speak or write about your life. I would never have chosen this for you, if I could somehow go back and choose for you to be born at term- I would. Obviously, Jimmie that was not possible then and it is not possible now. This is humanity, this is life. I do accept and embrace your journey, I receive the blessings and the growth that it has inspired and I praise God for his faithfulness to work all things together for the good . . . God has been faithful Jimmie, this is good! You are good!

"If I say, Surely the darkness shall cover me, and the light about me be night, even the darkness is not dark to you; the night is bright as the day, for darkness is as light with you.

For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made." Ps. 139

Jimmie you are fearfully and wonderfully made!

I'll love you forever,
Auntie Amber