Sunday, October 31, 2010

Big News!

Jimmie had an appointment on Friday with his Development Pediatrician Dr. H. Rachael and Dr. H. talked about a lot, but the best news is that he is going to write an order for Jimmie

to
get

his


G-Tube taken out!!!!!!!!!!!

Rachael thought he would balk at taking it out right away, but I think Dr. H. respects Rachael's mode of operation surrounding Jimmie's g-tube and he understands where Rachael is coming from. It's no secret that most of the medical professionals that see Jimmie are not entirely happy with his weight gain. Most of them would have Rachael use to the g-tube to get more calories down him to help bulk him up. But Rachael has documented how when she feeds Jimmie through his g-tube he takes in less by mouth. In fact if Rachael were to feed Jimmie 4 ounces through his tube he has proven over and over that he'll take exactly 4 ounces LESS by mouth that day.

As you all know Rachael has worked tirelessly to prevent Jimmie from becoming tube dependent. I think that could have happened easily and she dodged a huge bullet by being so incredibly stubborn and independent. She spent many hours researching tube dependency, feeding issues, tube weaning etc... She found that the US doctors mode of operation where these issues are concerned was not the road she wanted to go down. She adopted a much more European mindset when it came to feeding. She found advice and support from the Graz Clinic in Austria and from a tube fed/tube weaning group on yahoo.

Rachael also found support from Dr. H. He was the 1 doctor here in the city who agreed to help her tube wean Jimmie. He also referred Jimmie to an amazing OT!

The arguments for Jimmie keeping his tube go like this:

1. He needs to gain more weight it would be a good way to get more calories down him.
Answer- He will take less by mouth creating a scenario where he is not self regulating. Tube feeds increase as feedings by mouth decrease. This is the road back to tube dependancy.

Extra notes- His height growth curve looks great as does his development in most other ways. He is not "failure to thrive" he is just really skinny. He also takes in an acceptable/normal amount of calories a day by mouth. And back when he was mostly fed by the tube, he did not gain weight very well and spent a lot of time puking his feeds.

2. What if he has a nasty illness this winter and stops eating/drinking?
Answer- Why would you treat him different from the normal toddler in this scenario? If he needed it he could be hospitalized and given an i.v. for nutrition. Rachael would not allow any sort of tube feeds in that scenario. Jimmie has gone 4 months eating and drinking everything he needs on his own and longer than that taking in most of what he needs.

The way I see this whole thing is like this:

Jimmie developed a really bad case of reflux after he was taken off oxygen. During that time he associated drinking/eating with pain, so he stopped. While trying to get his reflux under control his medical team put in an NG and were not concerned at all with possible tube dependancy. They did not take any steps to encourage Jimmie to eat by mouth as he had been doing since he began feeding in the NICU.

Rachael felt uneasy to say the least with the whole scenario, but the damage after a week in the hospital on the NG was already done. The reflux treatments were not very effective either. Jimmie was now well on his way to tube dependancy.

Rachael started doing her own research and enlisted the help of a naturopath for Jimmie's reflux. She took Jimmie off the reflux medication and began to treat his reflux with diet and nutritional supplements. She followed a very strict diet designed to help Jimmie with suspected food allergies. This diet purified her breast milk and Jimmie's reflux began improving.

Then she set out to wean him from the NG. With the help of Dr. H. and an amazing OT they gave it a very good try, but they could not quite get Jimmie off of the NG. They decided perhaps the NG (irritating his nose and throat) was the problem and made the hard decision to get the g-tube with the hopes that it would assist in the weaning process. Sure enough- 3 weeks after the surgery Jimmie began to eat solids. A few months later he began to drink liquids again.

This has been a long hard road, but it could have been much longer and much harder were it not for Rachael's tireless advocating and Justin's support for Jimmie in his medical care. Rachael is well aware that there are some children whose circumstances necessitate a tube fed life for a few years. She now has a taste at what those parents go through to take care of their children and she has the upmost compassion and respect for those families. She just knew that Jimmie's problems were not severe enough to warrant that road and she stuck to her convictions in the face of many in the medical community who were telling her the opposite.

So we are rejoicing in this latest victory in Jimmie's life!

I won't lie- Rachael is a little nervous to let this go completely. The g-tube has been a kind of a "peace of mind" option to fall back on. She knows in her head that is not what she would fall back on, but it's still a little scary to let it go.

We don't have a date for the removal yet, but you'll hear about it when we do!

Praise God!

Love,
Amber

P.S. Happy Halloween! There will be a fun post with pictures of Jimmie in his costume coming soon.

P.S.S. Jimmie's toe is healing- just slowly. Keep praying for it!

Thursday, October 28, 2010

Still Struggling

Well I just talked to Rachael again and Jimmie did not eat dinner last night and he's not eaten much to speak of yet today. As the morning has progressed it's become more clear he's still in pain and the toe isn't really better. So please keep praying.

Love,
Amber

P.S. I gave the blog a make-over. (-: Hope you like it.

Wednesday, October 27, 2010

Prayers Needed For Jimmie

Update: (Thursday morning 10/28)

Justin took the first shift with Jimmie last night so Rachael slept for about 5 hours or so until 3:30am. During her shift Jimmie was really restless, but not screaming in pain like the night before.

This morning he seems happy and the red swollen hot area on his toe looks a little more concentrated so hopefully it is starting to heal. Poor Rachael did have nightmares about the worst case scenarios all night long. We were laughing about those fears this morning, but the whole thing has been worry making for Rachael and very painful for poor Jimmie.

Thank you for your continued prayers!

Update: (Wednesday evening 10/27)

Jimmie was put on an antibiotic and Rachael is soaking his toe in salts and applying a salve. Please pray that he sleeps better tonight and it heals quickly. I'll update again in the morning.

Thank you for praying!


Yesterday Rachael noticed one of Jimmie's big toes was bugging him. It was a little red and a little swollen. In the night it got much worse and no one really slept. Jimmie is in A LOT of pain with a very obviously infected big toe. They are on their way to Urgent Care now. Please pray this can be taken care of quickly. Poor little guy. Rachael really has no idea how this happened.

I will update later . . .

Love,
Amber

Friday, October 22, 2010

Fall Photo Shoot- By Jimmie Gravitt

I have not gotten to write a post here in a while. So I convinced auntie to let me tell you about last Friday.

Mommy organized a fall photo shoot with my cousins out on our land! Mom invited Cole and McKenna, told them to wear orange, told them to bring their pumpkins and camera- while she got a hay bale, more pumpkins and mums.

We started in a place that had too much sun and shadow, but there were still some cute shots.

That's because I am skilled and I don't squint.

Yes- I'm workin it, different angles and everything.

My cousins on the other hand. Oh my gosh!

Okay so this one is not too bad.. Enjoy this picture because I believe it's the only one where both Cole and McKenna are lookin at the camera and Kenna is almost smiling..
Cole open your eyes! McKenna look at the camera! See! Just like me.

Okay good Cole! BUT McKenna!
Lets try again, this is fun! Oh dear!

So then mommy and auntie thought we should move to a different place with more shade.

This spot was PERFECT for pictures, but my 2 cousins still couldn't get it right.
Guys, look! Just look at the camera and smile!
Like this!
Oh for crying out loud . . .
I'm done- I can't work like this!
That's right- it's time to go solo..
Watch and learn oh cousins of mine.



What!!?? We have to try the 3 of us again!
You got to be kidding. This is just not happening.
Ok, maybe if I touch her head she'll look up and smile..
Um- nope . . .

Alright that is it! I'm throwing my pumpkin!
That's right- I'm officially finished.
Get me out of here!!!

Ahem, yeah- I kind of lost it at the end, but I can only take so much. I mean I gave mommy and auntie lots of good material. It's not my fault that Cole and McKenna are not as highly trained in the art of looking cute for the camera.

Lets end this post on a good note.





I just know you enjoyed lookin at these awesome pictures of little ole me. And just so you know, Cole is better behind the lens.. That's right- he takes awesome pictures. And McKenna- well she's very photogenic when she doesn't know her picture is being taken.

And one more thing, I do have hair- believe it or not! It's just very very blond.

That's all for now,
Jimmie Jim Jim


Thursday, October 14, 2010

Dear Jimmie- Happy 20 Month Birthday

Dear Jimmie,

Happy 20 Month Birthday!

This you right after you were born.

And 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 special "Watch Me Grow Montage"!


You are struggling to gain weight. You are still about 17 pounds.

Your height has increased 3/8 to 31 inches long!

Your head is 18 inches around!

You are not on either the preemie or regular growth chart for your weight. You are on the regular growth chart with your height though. You are at about 8%. Because of this your nutritionist does not feel you have an endocrine/growth hormone problem. You are just very skinny. You have always gained weight slowly even when you were tube fed so your mommy and daddy are trying to be relaxed about it. Your mommy has a lot of thoughts, opinions and feelings about all of this that she is organizing on paper for your Developmental Pediatrician Dr. H. Over all your mommy is pretty positive about how you are doing!

Here is your little bony back! (-:

Here you can see your g-tube that is not being used anymore.

You have 120 followers on your blog Jimmie!

Your "Faithfulness" Video Montage has been viewed 13, 344 times. That's 620 times this month!

Your "Jimmie's Wonderful World" Montage has been viewed 949 times. And your "High Places" Video Montage has been viewed 651 times!

Your blog has been viewed 2,457 times this month for a total of 110,758 hits! You have a lot of very cool people who love to check on your progress Jimmie.

You have cut 2 molars this month Jimmie! Now you can really chew!

Physically you are doing well. Your OT has noticed a few motor planning issues. You've had to work pretty hard at learning to throw a ball this month and also learning to stack more than 2 blocks. You work hard, you get frustrated, but you eventually succeed.

I could probably dedicate an entire post to a speech update, but in short- we are starting to suspect a more serious issue than just a delay. Phonological Disorder and Apraxia are 2 of the possible diagnosis' being discussed. Cognitively you are doing great. Your receptive speech is on target if not ahead. However your speech is gibberish with a lot of guttural noises and nasal resonance. There is hardly any consistency in your speech. You have maybe four or five approximations of words that are consistent. You spend a lot of time grunting and screaming in frustration. Unfortunately this is a strange feeling of deja vu for me Jimmie. My daughter (your cousin) McKenna was diagnosed with Apraxia at age 2 a little over a year ago. After a year of intensive speech therapy she is doing really well. (I'm working on a new update for McKenna's blog! ) It is still a little early to know for sure what you are dealing with Jimmie, but we'll know soon enough. I know that no matter what . . . you will overcome.

You are picking up signing really well. You sign "more", "dog", "bird", "eat", "open". It's so cute to see you signing to communicate. You are so smart Jimmie!

You didn't get out much this month Jimmie because cold and flu season has started. Your mommy and daddy go in lock down mode to protect you from germs. You go to Ma and Pa's on Sunday mornings while your mommy and daddy are at church. Pa took this video of you walking the rock path in their back yard. When Pa asks you if you are walking the rock path it sounds like you say "yep". (-:

video

You did get to play at the park with your cousins.

Cousin Jennette and her daughter Maddy came in town from Colorado!

We all had a wonderful morning at the park together!

Here you are saying, "hi" to some little boys.


And here you are climbing up the slide with cousin McKenna.

Here is your beautiful cousin Maddy!

And Jennette took this picture of you and ME swinging!

I love you so very much Jimmie! Your mommy invited us out to your house the other day and I canceled all of our previous plans for the day. We were healthy and we don't get to see you that often so you definitely get priority! You are getting so grown up. You shared your toys with your cousins so well! My heart has hurt a little bit this month because of the realization you will have to work hard for your speech. You've had to work hard for so many things most of us take for granted already. You have worked hard to breathe, to drink, to eat... However *you* don't feel sorry for yourself, of that I'm sure. So I will not pity you Jimmie. You are strong and beautiful and you have a wonderful life! You have life! Life should never be taken for granted and with you it is easy to remember that.

Love you forever my sweet Jimmie Jim Jim,
Auntie Amber

Wednesday, October 13, 2010

Misty

Jimmie turned 20 months on Monday! We are working on his post. Unfortunately Rachael had to put her 19 year old cat down yesterday. Misty was Rachael's best friend for many years. Rachael found her in a litter of kittens in the neighborhood that nobody was taking care of. Little Misty was the runt and wasn't doing well. She was starving, dehydrated and couldn't walk because one of her back legs was broken. Rachael rescued her and fed her with a dropper, splinted her back leg with a popsicle stick and loved her to health and a long life.

Misty has been really struggling the past few weeks, not eating much and having trouble hitting her litter box. Yesterday morning Rachael found that she may have had a stroke in the night. She was practically dragging her whole back end. It was sad. Misty was lame, dehydrated and starving just like when Rachael found her. Of course at this point the humane thing to do was let her go. Our local vet helped. Justin watched Jimmie and built Misty a little wooden box and dug a nice deep hole on their land and my mom went with Rach and was her support as she held Misty and waited for the end.

Good bye Misty. I can't say you were sweet, but you were feisty and full of character. Your golden years were definitely playing tag with Cheerio (golden lab). I still can't believe you guys NEVER got a long. Now perhaps you are both in the same place and have resumed the mayhem. (-: Jimmie will miss pulling your tail. Thank you for treating him gently.. (mostly)

Rachael and Misty are on the left.

Jimmie is doing well. We'll get his post done soon!

Love,
Amber

Wednesday, October 6, 2010

Squeaky Shoes! And Flu Season.

Rachael saw on the Leblanc Triplets blog that mommy (Heather) had bought these awesome shoes for her precious little ones. Rach thought they were so CUTE she had to have a pair for Jimmie. He loves them!


I love the end of the video! "Jimmie!! What are you eating??"

Jimmie is doing well. He is cutting quite a few teeth though. He's cut 3 and has 2 more on the way. Consequently he is really fussy and Monday he didn't eat at all. Yesterday he did a bit better, so hopefully once these teeth cut through he'll feel better.

Rachael has gone into flu season mode with Jimmie so no one will see much of him until spring. It's hard, but worth it. His immune system still needs to be OVERLY protected. He stays with Ma and Pa (Rach's parents) when Rachael and Justin go to church. Ma was supposed to watch him yesterday at her house, but Pa woke up with a sore throat so she washed up put on fresh clean clothes right before she walked out the door and went to Rod and Kathy's (Justin's parents) and watched him there instead. Rachael is teaching 3 days a week at the dance studio. She washes her hands a lot and when she arrives home she changes her clothes before she really interacts with Jimmie. Rachael feels sorry for Jimmie because he has such a lack of interaction with other kids. She and Justin play with him a lot and she lets him have outdoor time and sometimes she'll take him to a park. He also gets to interact with both sets of grandparents when they watch him, but nothing replaces peer interaction. )-: It is worth it though and he'll catch up with the other kids soon and really learn to play with and enjoy his peers.

The doctors initially said the first 2 years are the most important for protecting the immune system. Jimmie will turn 2 during/after this cold and flu season. So maybe next year will be a little closer to normal. I know all of you, our close family and friends will understand throughout this season and will be supportive of Rachael and Justin as they effort to to do what is best for Jimmie.

Thank you for your support and prayers for Jimmie!!

Love,
Amber