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"!

Make an on-line slide show at www.OneTrueMedia.com

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". (-:

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

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

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!

Make an on-line slide show at www.OneTrueMedia.com

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

Ha Ha!

I just had to share these two pictures Rachael texted me recently.

Blurry, but funny!

Jimmie for dinner. (-:

Jimmie is so awesome!

Love,

Amber

So CUTE!

Jimmie could not possibly be any cuter!

Love,

Amber

Yesterday . . .

Yesterday was Jimmie's 19th month birthday! Yesterday was also the annual Overland Park Regional NICU reunion! A fun post coming later...

My family and I have a nasty virus so I'm moving slow on this.

Love,

Amber

Open Doors

Rachael and Justin will have them all over their house. Jimmie taught himself how to open doors this afternoon. Rachael was in their basement doing something when she heard a noise and then Jimmie's voice. She went to check and there was Jimmie standing at the top of the stairs with a self satisfied smile on his face. Rachael quickly went up the stairs and shut the door again and asked Jimmie, "show momma Jimmie.." So he smiled, went up on his tip toes, grabbed the door handle, pulled it down and the door popped open!

This is BIG TROUBLE! Rachael and Justin will now need to install some sort of safety locking system on some of their doors.

Jimmie is doing okay. He's gaining weight very slowly though. Only 3 ounces this past month. His nutritionist (yesterday) suggested an appetite stimulant. Rachael researched it and really does not want Jimmie to use it. She feels strongly about Jimmie naturally taking in what he needs to. She is trying to be relaxed with his weight gain and accept that this is just where Jimmie is right now. He is continuing to grow in height and is developing well. Remember she is not supplementing what he eats with tube feeds anymore. She never did very many tube feeds and even back when he was on tube feeds almost exclusively he never responded to it with good weight gain. So she knows that is not the answer.

What Rachael really wants is for him to not get sick as much and for him to get over the sicknesses he does get faster. She feels that will help at least in part with his weight gain.

She is doing a lot of natural things to try to help with his immune system.

We would appreciate some fat prayers and prayers for health for our little Jimmie!

Here are those videos I promised! Jimmie motor boating, Jimmie honking the boat horn and Jimmie in the aftermath of some brown sugar shenanigans . . . . He's so CUTE!

Love,

Amber