Monday, November 30, 2009


Last night I was in pure panic, and I really wasn't sure this issue with Jude would have a good outcome. I bargained, I prayed, and I felt very very alone. I wondered how people could go on with their lives when Jude was so sick, and it made me angry. I got texts and became angry, but I DON'T know why, and I apologize. I knew my frame of mind was irrational, but nothing could stop all my thoughts flowing like a flooding river. I wanted to be with my boy holding him tight, and kissing his forehead like I always do. I finally forced myself to sleep for awhile, and Emily had curled up beside me. The next morning, I reluctantly got up for work, and hauled myself, and Emily out for the day. Then I got a call from Mike that after several rounds of the new antibiotic Jude looked better. I felt happier, but I was still really worried.

Tonight I went to the hospital so anxious to hold Jude, and give him little baby kisses all over his face. I walked in to see him sleeping soundly, but cozy. He was still hooked up to the IV in his foot, a heart monitor, a respiratory monitor, and more, but he looked like.......well he looked like Jude. I came over and kissed him, and caught the unmistakable odor of the strong glue they use on the scalp for an EEG. I then noticed all the red marker drawings on his head, his ears, and more, which in my world is a tell tell sign that someone has been reading your child's brain. I knew they had completed the promised EEG, and I knew the results were forthcoming.

Once I got there Mike decided to take a shower..... in the smallest shower ever invented, but he was thankful he could take one. It's a bit like showering inside a coffin, so we exchanged a few laughs about him trying to fit his big build inside the tiny space. While in the shower I had the nurse change Judes bedding, I changed his diaper, they gave him his antibiotics, I held Jude, and the neurologist came by. Mike came out of the shower commenting on how much can happen in mearly minutes, so true. Minutes seem to calculate our entire lives, but only some are given the vision that each of those minutes should be cherished and adored.

The neurologist actually delivered the only good news we have received out of this hospital visit, save the fact Jude is doing better. He came in asking how Jude was doing, commented on how much better Jude looked, and agreed the medication was probably not the culprit for this close call. He then said "The EEG, ... well looked better". I paused for a second, and then repeated what he said rather surprised. Then he explained that he would have to consult his prior records on Jude, but the abnormal brain activity seems limited to the right side of the brain. We know the stroke was worse on that side, so we have always known the seizures start on that side, but never knew they might be limited to that side. He then said the function of Jude's overall brain has picked up, and Jude's brain has "matured". He also said that Jude is gaining mobility of his left side, and that the blank moments Jude experienced prior to this EEG were almost eliminated. WOW!!! I am hopping on the prayer works band wagon!!!

He then asked me to consider a G button, but Mike really feels he can help Jude eat, so we are forgoing that for the time being. He also talked to me about future brain surgeries that may help, but that is a long long way off. I told the neurologist that Jude's intestinal problems reminded me of Emily's stint with the parasite she caught at the local swim school (I Mentioned this the other night). He was very nice, and told me that the parasite I was referencing is one of the hardest things to diagnose, and that Jude's issues were very similar. They could be using the same antibiotic to treat Jude they could have used for Emily years ago. History repeats itself I guess.............amazingly enough Em had terrible reflux. Emily was on antacids for years, and at the time the medical community had no idea those drugs could cause this same issue Jude has. This falls into the category of things that make you go hmmmm. They never isolated the parasite with Emily they just "guessed" so I am wondering if she didn't have a similar ailment. A big thanks to the staff of Dallas Medical City for helping Jude through this.

I held Jude close to me for awhile tonight, and he looked right into my eyes, sucked on his paci, and was happy like he normally is. When I had to place him into his bed he cried for me, which assured me he is feeling better. I, of course, picked him up and held him close. I sucked in every baby smell from him I could, and rubbed his back. I was so thankful he cried because he wanted to be picked up, it was a sign Jude was finding himself. It was short lived because he became lethargic again, but I was still so just thankful. I know that losing Jude is an issue the doctors have told me I might encounter someday, but I am not ready yet. I am not sure I never will be, and I hope I never have to be.

If you have never been put in the situation of truly worrying about your child's mortality then find something positive to do today. Donate to a local charity, and help those that have. I went and picked up baby cereal on my way home, and we are donating it to a local food pantry. My adorable husband said I am rubbing off on him, and he was the one who suggested it, and helping others does help heal your heart. So whatever situation you are in, I encourage you to help someone this holiday season.

The other good news is Mike found out the hospital Jude is at has Emilys holiday Smile Boxes in reserve for the holiday season. There are only 25 there so we want to provide more, but I am still so so so happy we will touch another child's life in a positive way.

Ps ~"From your head down to your toes, you're not much goodness knows. But you're precious to me, sweet as can be, baby of mine. "


Colleen said...

Thinking and praying for you and sweet little Jude!

Anonymous said...

No one knows for sure what God's intentions are for Jude - only God can see the whole picture. But, I think Jude is an amazing child and will far surpass your expectations. God bless you Jude and your whole family.

A Girl Named Me said...

Sounds like lots of good news. I'm glad you're posting regular updates - I have been thinking of you and your entire family frequently. xo

mom2nji said...

If anyone I know was entitled to a breakdown it would be you. I got chills reading about Jude's EEG results. I hope he is home and healthy soon.

Our Journey said...

we are praying for sweet jude and the entire family. i know this isnt the time or place, but... maybe one day we can meet up at therapy or something and i can show you and tell you about frankies g-button..

god bless you all, hang in there!

Anonymous said...

I am so glad that Jude is perking up! I know how exhausting it is to have a kiddo in the hospital. I also can so relate to the fear of losing a child. Anyways, hang in there and prayers are being said for all of you.

Dannette (a mom who follows your blog)

susie4510 said...

No one, not even the Specialists" really know the cability of the brain! Muy thought and prayers are with you....

Katy said...

That really is some good news on the EEG front. Improvement is always good. Do you read any of the blogs of kid's who've had surgery for seizures. I read two myself and it's tough, but so far it seems like it's helping. So many things to think about and yes, it is important to hold these little babies tight and just love them.