Remembering why it sometimes sucks to go to Babies R Us!

I posted this also at Postcards from Holland. A few weeks ago, I was looking through some old archives at an internet message board where I’ve been a member for approximately 6 years. The topic of the board centers around Moms with children born in January 2001 – a “Mommy Playgroup” if you will. And this particular playgroup centers on my “typical” son, and not my “special needs” daughter.

I found a post I had written about some of my difficulties early on with Jenelle. It was moving to see how far I’ve come – but also a reminder that this journey through the land of special needs is such a roller coaster of emotions. I thought I’d share parts of that post here, so those of you with special needs children could remember that you once felt the same, or maybe that someone new to this experience will find comfort in knowing these feelings are very normal.

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August 19, 2003
(note: Jenelle was only 9 months old at the time, and at this time, we did not know she was having seizures. We just knew that she was "delayed" and did not have any other diagnosis.)

I haven't shared any of this here yet... I mostly post these feelings on the support group boards I've found for special needs kids. I just realized that I should share all sides of this with all of you and not just share Jenelle's updates and improvements, so here goes …

I had to go to Babies R Us last night to get some formula -they are the cheapest around for the bulk size of Good Start. It didn't bother me before, but now it gets to me. You see all these babies, grasping at things on shelves, sitting up, babbling, etc. Then you see all these baby gifts like baby books, milestone charts, calendars, teething rings, walkers, bicycles, etc. I look at some of the toys, and think, that might help Jenelle, and then see the age range is for a baby 0 months to 6 months and that reminds me again. That part of this journey is so hard.

Two weeks ago I hit my low, and posted about it at a special needs board. Everyone there understood what I was experiencing and I got some great feedback and support. Then that night, I went grocery shopping, and at the checkout the cashier asked if I wanted to donate a dollar to “Jerry's Kids” and I lost it again mumbling while fighting back tears that I had my own “Jerry’s Kid” at home. Friends of mine are pregnant again or have recently had new babies. It hurts to hear about their newborns and their recent accomplishments. I keep them posted about Jenelle, but I never share these feelings I'm sharing here. It hurts to hear that a 3 month old has mastered rolling, to know that Jenelle only started doing it last week at the age of 6 months. It hurts to hear a Mommy complain about her Baby pulling her hair, when I wish Jenelle would even take an interest in playing with mine.

I get over these feelings pretty quickly and remember this is a stressful time we are experiencing, and that I'm not the first parent to have a child with special needs. Then I go to Babies R Us for formula... and I’m hit with the pain all over again.

Just wanted to share that I am experiencing both sides of things. I know you all would understand.
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Remember the pain of the unknown? How do we overcome it – or do we just learn to accept it? These feels are still fresh, but the sting isn’t as painful. There is hope and things do get better. If you are just starting this journey – remember that! You will find a way to survive, and make it through!

WOO HOO - One Year!

Today marks a year since Jenelle's last hospital admission. Wow, I never actually thought we'd go this long (or be this healthy) but I'm thrilled she is doing so well. I checked the archives to read what we were doing a year ago, and unfortunately not much has changed since that last hospital admission. If you'd like to stroll down memory lane, click here.

Jenelle still has bouts of inconsolable crying. We have no idea why she does this. We assume she is trying to get attention or cries in frustration, but as you can imagine it is quite frustrating for us as well. In fact, last night, Jenelle had a screaming fit for a good 45 minutes. When I held her, she stopped crying, giggled a little, then got so wiggly it was too difficult to keep hold of her, so I put her down only to have her start crying again. The crying finally stopped when I decided to give her some Tylenol. In fact, I put her in her bed, gave her Tylenol and left her alone for a few minutes. As if she was getting a "time out" or something. I felt horrible but at the same time, I couldn't stand the crying any longer.

So, playing Dr. Mom, I think I'll continue with the Tylenol when she starts her crying fits. If this works, then we'll need to take her to the doctor and/or ER to figure out what is wrong. My fear is that perhaps she has broken a bone or something and we just haven't figured out where. I hope it truly is simply 3 year old antics.

We are enjoying this first day of summer and this new milestone for our girl! What an amazing year it has been!

Update on Swallow Study

Our girl is doing really well lately - so many new things happening. Today we had our "Swallow Study" done at CHOC, and she did well. She is swallowing, however she is still at risk for "silent aspiration" because she likes to keep food held at the back of her throat before swallowing. We will be back to visit the GI doctor in a month, so I'll know more about the results at that time. I've been trying to spoon feed Jenelle at home some more, and she is doing exceptionally well. Last week at dinner with the family, I tried to spoon feed her and she started choking and was not interested. I set the jar of food on her high chair tray and went back to my meal. After a few minutes, I looked over to see Jenelle with her mouth around the jar as if she were trying to get the food herself. I then tried to spoon feed her again, and she really took more interest in eating, and even made effort to lean forward with her mouth open to get the spoon in her mouth. This is excellent progress and hopefully feeding will continue to improve.

Jenelle recently had an ear infection, but that has since cleared. Last Friday I picked her up from school and walked in to find her "walking" down the hall in a gait training walker. I didn't recognize her at first because she was walking so very well. She is sitting like a champ these days, and often gets up on her knees as if she wants to walk on her knees. She has amazing strength. Jenelle's school will continue through the end of July, and we are thankful for the extra therapy.

Thanks for the continued prayers - I'll keep you posted!

Happy 1st Anniversary to Jenelle's "Gas Tank!"

"Ode to the Mic-Key Button"

Oh Mic-key button, we love you so,
because of you, our girl can grow.

Feeding is easy now and meds are too,
Oh the arguments and fights that we went through!

The hospital and ER visits are seldom and few
however did we survivie life without you?

Jenelle a year ago with her "temporary" g-tube:

And 6 weeks later with her permanent Mic-Key Button:

And just for fun, a cute story about showing Jack his sister's G-Tube for the first time:

"When Jack got home on Thursday, I sat down with him and explained that Jenelle had surgery and was now going to have a "feeding tube" sticking out of her belly. After explaining what it was for and what it looked like and that he should never, ever touch it, I asked if he wanted to see it. He said yes, so we went into Jenelle's room where she was in her crib and I pulled up her shirt to show him the tube. Jack looked at the tube, then said, "Mommy, she has a gas tank now!" (he is right in more ways that one!) And that was it - he was relatively un-phased by the whole thing!"

Happy 1st Anniversary Mic-Key Button!

Mommy & Jenelle Day

I had a beautiful dream the other night. Jenelle was sitting up all nice and pretty and I was lying down next to her on the floor. Not sure what we were doing. Then all of a sudden, she looked at me straight in the eye and said, “Thank you Mommy!” And then I woke up.

Jenelle had an ear infection over the weekend. Last Friday she was running 101, and again on Saturday so we made a trip to urgent care. The right ear was infected and we left after 40 minutes with a prescription for Zithromax. She was fine on Sunday, but woke with a fever of 102.5 yesterday. Immediately I knew I would be staying home with her all day.

Yesterday was one of the best “Mommy & Jenelle Only” days ever. We cuddled, we hugged and if not for the 102 fever I knew she couldn’t possibly have faked, I would have thought she was being sick on purpose to skip school and spend the day with just me. Sometimes I wonder what she is thinking. Which brings me back to my dream.

A year ago when the show Medium first came out, I was surfing the website for the real life Allison Dubois and saw that she had an email address for people wanting “Closure” about loved ones that have passed on. Next to the email address, there was a warning that at that time they could not assure that all emails would be returned promptly as the real life Allison was busy working on the new show, etc. (I have since noticed that this feature has been removed from her website as she is too busy.)

I felt compelled to write to her and sent a very brief email asking if she also had the ability to communicate with persons still alive that could not communicate (i.e. babies and the mentally retarded.) I explained briefly that I had a child with special needs and that I always wanted to know if she was aware of what was going on and whether or not she was happy.

I got a response the very next day. It read:

Yes I can do that and let me save you some pain and money. Your daughter knows she's loved and does feel happiness. To her when she feels an episode it's almost like a void in her day. She's in good hands and is quite angelic to those who've passed that help you take care of her.
All My Best,
Allison

I still cry when I read this email response. It has meant so much to me. I do believe that there are Angels everywhere, and this response moved me deeply. It could have been a “canned” answer, but it is what I needed to hear at the time. Just like my dream the other night. Although sometimes caring for Jenelle feels like being on auto-pilot, I think she truly realizes all we do for her benefit. And although she may never speak or have the capability to sign, in my dreams she is thankful. And truly, that is all I need to know for now.

A new look for Jenelle's Journey!

Well, I decided that my Princess Jenelle deserved a new look, and found this beautiful "free" template at Zootsdesigns. Thanks for your help Miss Zoot!

Speaking of which, Miss Jenelle got some new "Princess" shoes last night. She's grown from a size 6 1/2 to size 8. Too bad she only grows out of shoes and doesn't actually "wear" them out.

Let me know if you like it - I'm still playing with it myself.

ADDED: Some of you with a "Firefox" browser are telling me the words at top are bunched together. Not sure how to fix that, but I'll try. It looks OK in my Microsoft Internet Explorer.

THANK YOU!

THANK YOU for your support of the 2006 Epilepsy Freedom Walk! Jenelle’s Avocados has raised $9,100 – not including some checks I still have sitting on my desk and that are some that are still to come via U.S. Mail! In all, the walk raised almost $81,409.42 – they are still counting the money! 100% of the funds will go directly to Orange County services for families like ours affected by Epilepsy! We couldn’t be more pleased, and we thank you from the bottom of our heart!

Here are some photos of the day on Saturday, which was very hot at 95 degrees:

Miss Jenelle in Angels Red!

Our "Rally Monkey" Wagon!

Jenelle's Avocados 2006!

And some exciting milestone news for Jenelle - Saturday she took sips from a sippy cup! We are so excited with this progress - and it will make it much easier to keep her hydrated over the summer with this new skill! This also gives me hope that she may start to enjoy new foods as well. Last night at the grocery store, I had to purchase many different types of juices to get Jenelle interested, and a couple of new sippy cups as well as I think I tossed our old ones!

Thank you again for your support for the Epilepsy Alliance! Jenelle has her swallow study scheduled for June 19, so I'll keep you posted!