Need encouragement from some of you who have "been there, done that"!

[momngrandma]

I posted the following on the community board, but am bringing it over here to my friends on the disABILITIES board, too. I have thought of you so often the last few weeks, even though I couldn't come to the DIS, because I know some of the things we are just learning to deal with now, are things you have been dealing with for many years. I thought maybe you might have some encouraging words or advice or tips to share that would make me feel a little more confident. Thanks!!! Here is what I posted:

"It has been a month since I have been here. Some of you may remember me telling you about our special ds, Robbie. The last time I wrote we had taken Robbie into the hospital because he was having seizures that would not stop. For six days he continued to seize, and then on the seventh day he went into a coma. We almost lost him that day. To make a long story short, he was in the coma for ten days, and during that time also got pneumonia. He was in intensive care for 16 days. He had surgery to implant a "vagus nerve stimulator" -- kind of a pacemaker for the brain to help control the seizures. The seizures are, for the most part, under control at this time although he is heavily drugged. (As the VNS becomes more and more effective, we hope to be able to back off on the drugs and their side effects.) Due to him being on a ventilator for so long, he has lost the ability (or desire) to swallow, so we had to have a peg G-tube installed so that we can feed him directly through his stomach. After 30 days in the hospital, we were finally able to bring him home on Friday.

We are so grateful to God for allowing us to keep our sweet Robbie, but life will be very different around here for a while. Before this happened, Robbie was severely retarded -- about like a one or two year old mentally. But he could walk, eat, play -- and he was so lively and fun, funny and full of personality -- a real lovey, happy "people" person. Now he is silent, unable to walk or sit up or eat, and occasionally gives us a teeny little half-smile. We are praying that through physical and occupational therapy, and speech therapy to work on his swallowing ability, he will regain those things he has lost. And maybe once we can back off some of the drugs, we'll see the spark and joy come back into his eyes. We are concerned that there may have been more brain damage, but are holding onto hope that these things are simply due to being in bed for a month, the drugs, and having the ventilator tube so long.

I would so much appreciate your prayers for Robbie and for dh and myself as we continue to learn to handle all of this. I just want to see Robbie happy again, and able to walk and eat again, too. And we are praying that the VNS will do what it's supposed to do and Robbie will be able to live without all the seizures that have plagued him for so long. (The VNS doesn't work for everyone, but they think Robbie is a good candidate. They will turn it on tomorrow, but it will be several months before we will know how effective it will be for him.)

We have been planning for two years a big trip to WDW in May -- Robbie's first -- and I am so hoping he will be strong enough to go and enjoy it. After all we have been through, it would be so wonderful to be able to go and relax and forget our cares for a while.

Anyway -- please forgive me for not telling you earlier what was happening. DH and I were at the hospital 24 hours a day with him for a month, and the few times I got home to sleep in my own bed or shower, there was not time to even turn on the computer. I know some of you were praying for Robbie when this all started and were probably wondering what happened. Thank you so much for your prayers and thoughts."

<font size="5" color="#FF0066" face="Amazone BT">Cindy</font>

<IMG width="135" height="200"SRC="file:///C:/My%20Documents/minnietravel.jpg">

<font size="4"><font color="#FF0066><font face="Comic Sans MS"><marquee direction="right" align="middle" behavior="alternate">GOING TO WDW MAY 10-16, 2001!!!</marquee></font></font></font>

 

[teri]

Oh, you poor dears! My heart goes out to your entire family. I pray that the God will give the doctors and caregivers will have the wisdom and ability to make Robbie's life a comfortable and happy as possible.

Take good care of yourselves, and remember that our prayers are with you. Come in anytime!!

{{{{{{Hug}}}}}}}}

"My brain takes a vacation just to give my heart more room..."
teri@iluvdisney.com

[This message was edited by teri on 03-04-01 at 02:54 PM.]

 

[JorJor]

I posted on the IB, but I wanted to post here too...To let you know that I understand the pain, confusion, and the "unknown" about the future, that you're going through.In regards to the G tube, and having to get Robbie to swallow on his own again....I have "been there...done that." We fed our ds3 for 13 months with a g tube. Then we had to teach him to chew, swallow, ect. (Not to mention, he needed 5 surgeries just tp allow him to eat by mouth. ) So, please don't hesitate to email me, Cindy, with any questions, or just for some support. God's blessings to you and dh, and dear Robbie!!

[This message was edited by JorJor on 03-04-01 at 01:12 PM.]

 

[SueOKW]

There have been times in my life where I thought to myself - how strong is a person supposed to be? How can I possibly face another minute of this traumatic situation? Heck, last night DH was saying nearly the same thing as our wonderful DS was doing his best imitation of Jacob Marley. (He can't talk and when he's sick he can mooooaaann with the best of them.)

I read your post on CB and my heart went out to you and yours. Seizures are the scariest things in the world, and since you've lived with them for years you know what I mean when I say you never know when it will stop, and what the damage is going to be. And, yes, it sounds like Robbie has changed, hopefully only temporarily, and will need all the love you have and a lot of hard work to become himself again.

I remember being in the depths of despair like you and your DH are now. Like I said above, you wonder how much more you can take. Lean on each other. Talk a lot. Hold hands. The sun will come up every day no matter what. It isn't going to be midnight forever.

You are in my thoughts. {{{hug}}}
Sue

<img width="200" src="http://www.geocities.com/dmurphydis/cleveland.gif">

 

[SueM in MN]

I am glad you posted this over here too. I saw it on the Community Board and wanted to post a link, but I got away for a few minutes and never got the computer back again.
I can't think of any beautiful, wise words right now, just that I believe if God gives you difficulties to get through, along with them, you will be given the strength to get through them.
I'll keep you in my thoughts and prayers.Ï

SueM in MN
Co-Moderator of disABILITIES

 

[Michelle NY]

Cindy
I wish I had some wonderful words of wisdom , but I don't. I haven't been there done that , but I have had my own share of troubles with my daughter. I just wanted you to know that I will keep you and your family in my thoughts and prayers .

 

[EpcotMom]

My DS has Lennox-Gastaut siezures. The hardest to control. When he first started having seizures, he was 6. Four years ago, he had an episode of status, and ended up in the PICU, on a ventilator. He was severely retarded before, but lost his ability to walk, talk and laugh. He is my dearest sweetest love...I too had a trip to WDW planned. should we go or not? WELL...My DS has had a lot of miracles, and so have we..and when he got to Disney, some part of him was reached. He smiled, sang to Mickey and identified some characters I couldn't. Robbie is a great gift, and I can tell you this for a fact; He loves to be cuddled and held. And you cherish him.You will see many small and large milestones, and explore his world with him. I am so glad that Robbie is better, and will keep improving. Peter(my DS) is going to be 21 in July. He loves Disney so much we moved here. Let us know about Robbies milestones. We will pray for all of you!

 

[Dsnygirl]

My eyes widened as I read your report and my heart is with you. I am a teacher of children with special needs and one of my students has a Vagus Nerve Stimulator. She is now 12, and the VSN was implanted when she was 8. She was one of the youngest kids in Michigan to get one. I want you to know that it has been amazingly successful. She once had frequent seizures and now they average about once a week. It has changed her life, and given her family a new lease on life. She is no longer fragile- she goes everywhere and really enjoys life to the fullest. Her cognitive level sounds to be similar to your DS and she is just a JOY!! I know that as you said, it is not successful for everyone, but I hope this will help you to think positive. I know things will be okay for your DS. You'll be in my prayers.

 

[DJBounce]

Your post certainly hit close to home. My dd just came off the vent on Sunday. She was placed on it because of her repetitive seizures. Fortunatly, Tiffani's stopped within a few hours. Because of all the drugs, she has been very sedated since Friday. She is starting to come out of it now, though. She smiled this morning for me. That brought tears to my eyes. I know gradually she will be the happy and energetic child she was before. She will have to relearn basic tasks, but I have every confidence that she will be able to do them with time. My thoughts and prayers are with Robbie and your family.

DrewJ
The measure of a true hero is not the size of their strength, but the strength of their hearts.