It's Been a Year...and I am Well...

From Gus' CaringBridge site:

WEDNESDAY, MAY 31, 2006 03:21 PM, CDT
Gus is having a very hard day. Medically there isn't much more that can done. His blood pressure has continued to trend downward, his blood gas has not been good, it is a struggle to watch. We want to be alligned with God's will. Our hearts continue to yearn and we want things to be as we want them. We are struggling with how to pray.
" I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world"
John 16:33

THURSDAY, JUNE 01, 2006 08:21 AM, CDT
Gus won his long fight yesterday at about 7:00pm. We rejoice for him and celebrate his time with us. We are comforted with knowledge that we will all be together with our Lord Jesus Christ and our Father. Thank you again for all your prayers. Keep praying, Praise the Lord.

Make video montages at www.OneTrueMedia.com

This Day Last Year

From Gus' Caringbridge site:

MONDAY, MAY 29, 2006 10:22 PM, EDT

Gus is improved from where he was a few days ago. His blood pressure and his heart rate have been problems. Our hope is that enough fluid can be drawn off by this hemo-filtration that pressure can be relieved from his chest and organs so that it all will work more effciently and improve him. We had a little scare this morning, the doctors believe that Gus's tissues are holding alot of his sedation medicine. This is keeping him from moving, but we need some movement to get the fluid from his tissues back in his blood stream and be removed. His sedation was cut way back but we weren't getting any response. The doctor thought we may have had a brain bleed but an ultra-sound showed no signs of one and this evening Gus is giving us a little more movement. We cannot express our gratitude for your prayers and words of encouragement. We can feel ourselves surrounded by your love and prayers. "Don't be afraid" the prophet answered. "Those who are with us are more than those who are with them." 2 Kings 6:16

Waiting...

Please join me in praying for Brandon and his family. Brandon has been through a lot over the past eleven months. Currently he is awaiting his second small bowel transplant. You can read all about Brandon at his CaringBridge site and see a photo of him at Gifts From Heaven.

Heavy Heart

From a skinny little "gut baby" to a swollen, blood leaking out of his veins and into his tissue baby. I'm not mad...just very, very sad right now. I hate that he got so bad before he died. He was always so full of life but he died so lifeless...until the peace of the Lord washed over his face. I am convinced that I have never been as close to Heaven as I was at that very moment his heart beat for the last time and I laid him before the Lord.

Sometimes it is so hard for me to wrap my mind around the fact that he was here and now he's gone. I wish I could look through the kitchen down into the den and see him laying on his quilt trying to roll over...or playing with one of sibs...or plucking out his hearing aids...oh, how I miss those hearing aids! I miss putting the toupee tape on the aids so it was harder for him to pull them out....I miss feeding him those little veggie puffs that melt in your mouth...I miss finding cheese puffs behind his ears...I just miss him....and I always will. Yet, in a strange way, there's comfort in knowing that others have experienced the same thing.

It's good to not be alone in your suffering.

Updates

This past Wednesday marked three years since Izzy's accident. If you haven't visited her site and read her story, you need to! Her mom, Annie, is a wonderful mom and very devoted to Izzy's continued healing. We are praying for her complete healing and look forward with excitement to this happening!





Damon has gained some weight! WooHoo...this is a HUGE biggie for short gut kids! Good news concerning his broviac line too...they were able to draw blood! Another biggie...a lot of times an occluded line means that the line has to be replaced which means another surgery...not fun! Now...his Mic-Key button is causing him some problems so we need to be praying about that issue . Other than the button, Damon is doing well and visiting the docs in Pittsburgh on a regular basis. I'm sure his mom would appreciate some comments at his Caringbridge site!

Sonya goes to church with Aoife's family and she has told me that Aoife seems to be doing very well and the she looks good. I've asked Sonya to write a post with a current update so be looking for that soon!

The Interactive Body

I just found this Interactive Body that explains all about the different organs and tissue that are transplanted....neat!


Speaking of neat, I found this button over at The Wait and Wonder. Thanks Moreena!! Grab the button for your blog by right-clicking and saving to your computer. You'll have to upload it to your image hosting service...and then link to Share Your Life.

Grief Dream #1

Having strange dreams after your child has died is very common. At first, my dreams would completely wear me out. I was emotionally, menatally even physically drained after a night of dreaming of Gus. The dreams weren't scary...just hard work. It was my minds way of processing what had happened...the fact that Gus was no longer here with me. Grief is hard, hard work my friends so if you find yourself having these types of dreams and they are hard to get through...remember that you're not alone and that this is perfectly normal!

Grief Dream #1

I'm sure this is not my first grief dream but it is the first one I documented.

September 13th, 2006

We had taken Gus back to the NICU docs for his yearly physical. Dr. Nalle was supposed to see us...we waited for quite some time and then Dr. Wooldridge came in and told us that Dr. Nalle had the "trots" (aren't dreams funny!) and that he wouldn't be in to see us. He asked if it would be ok if Dr. GaLoop could see us and we said that would be fine....I have no idea who Dr. GaLoop is . When he gets there he tells us that they don't think the original sepsis that Gus had was still present...they couldn't find any sign of it in his neck. He told us that he wasn't sure the Gus would be able to think ot talk and the Gus rolled over and said "laryngiscope" and Dr. GaLoop was really impressed....then I woke up!

I'd love to hear some of your grief dreams!

Devastation

I saw this photo over at CNN and all I can do is shake my head...I can't even begin to imagine what this is like...what it is like to live through something like this. When I see natural disasters like these, I can't help but wonder about all the people who are dependent on medical equipment such as TPN pumps, oxygen, nutrition pumps, etc....most pumps have a battery back-up but sheesh...who wants to worry about a battery dying in the midst of all of this??? And TPN needs to be in the fridge...and what if your fridge has been blown away...and what if your meds have been blown away....too much, too much....

... though he stumble, he will not fall, for the LORD upholds him with his hand.
Psalm 37:24

Baby Gonzalez

I wrote about Baby Gonzalez over at Up the Hill Gang and wanted to share the post over here also. This is such a controversial subject....I have so many mixed feelings about this!

Damon Update

Damon's parents got a call from Pittsburgh but not for a transplant. The docs there are very concerned about a section of his small bowel that doesn't look too good. This is very discouraging news for this family because Damon doesn't have much small bowel to spare. The docs have also decided to change his TPN to see if that will help him gain more weight. Folks, we really need to be praying for this little guy...the lipids in TPN can permanently damage the liver. Please pray for his parents too...these people are soooo nice and it breaks my heart knowing that they are having to "ride this rollercoaster" as they wait for Damon's life-saving transplant.

Damon is driving his brother around! lol!!

Izzy Update..Finally!

I have been a complete loser when it comes to keeping you all updated about these kiddos...and I'm sorry for that. So, without further delay, I give you an update on Izzy!

Izzy continues to do well with her therapy and her and Bear, one of her therapists, are becoming good friends. Annie wrote that the IEP has been completed (woohoo!!) and it looks like Izzy will be in the classroom more often since it is believed that she understands much more than originally thought!! That is so exciting!!

Izzy is so blessed to have such a wonderful and caring family who refuses to give up on her. All her sibs are capable of helping with her exercises and such at home...I think this is so important for Izzy and for her sibs. People sometimes forget that the best therapy there is for children is that of their sibs. Annie is a very smart mom and knows this!!

I love seeing how God is working through Izzy!! Neat!

Truth or Lie??

Gus' "Nasty Dog"...he would rub this dogs ear as he went to sleep.

I just found this link in my favorites file... I think it's a good one!