Thursday, December 1, 2011

A doctor visit, an email, and a van

I took the morning off to get Jude to his check up with his pediatrician. The doctor said she thinks the vein in his neck did warrant a full CBC. She also ordered a liver panel since we know the felbatol can wreak havoc on the liver. She took his blood pressure which was in normal limits. Jude was fairly happy while we were at the office until the took his blood. Normally Jude is a little trooper but the nurse couldn't find his vein and the needle was in his arm. I saw her wiggle the needle around and my body cringed at the thought of the pain. Jude soon became distressed and we knew we were in trouble when his bottom lip poked out. The nurse finished with the blood work and gave Jude his flu shot. This sent him into more tears so I picked up to soothe his hurt. I said "Mommy will rescue you!". Charlotte (our nurse) thought it was funny, but the doctor's nurse must not have thought it was that cute. Sheesh lighten up lady have some coffee or something. So now we just wait on the blood results.

I was contacted yesterday by a young mom who is in a similar situation I was in a few years ago when I was told Jude's brain vents were increased. I struggle sometimes about how candid I should be with these moms. Why do I struggle? Because it's their decision on what to do and how to move forward. I explain them just how amazing Jude is and how much he has done for our lives. I explain what an impact he has made on everyone around him. Although, I also explain just how difficult our life is and Jude's life is. Despite being pro-life people NEED to understand what they are getting into so I ask people to take their blinders off. Our doctor once told us they have an alarming rate of special needs children that are left at hospitals or dropped off. I cannot imagine Jude just laying somewhere with no one to pat him, love on him, or make him smile. This life is HARD, but it would never be that hard for me. I love Jude with all my heart. So put the dreams aside for a moment of the perfect child and make the best decision for you, for the baby, and for your family. Whatever that is don't ever look back with questions.  No one imagines having a baby with special needs and you cannot imagine what it's like unless you have lived it. So therefore, I never judge anyone for whatever decision they make. I have been contacted by many moms over the past few years. They have all made various decisions. My heart aches for each one that emails me. I hear the pain in their words and I know how they feel. I know what lies ahead and all I can mutter is what I was told..."the first year is the hardest". It's so true.

Okay back to more positive issues. I really really want to work towards getting Jude this van. The chair is perfect! Not only does it lower to easily put Jude in his chair, but it reclines. Jude needs to recline to keep his head up and it helps with his aspiration issues. Jude coughs uncontrollably at times when he is sitting straight up. We have had to pull over to yank him out of the car seat to help him breathe again. So this is on my list. Dear Santa ~ can you swing it? Just! I was told that it's much safer to keep children and young adults restrained in a seat is possible vs a wheelchair when being transported. I am not sure I can continue to life him, but if I can this is a great solution.


Anonymous said...

I read your blog regularly, and I pray for you and your family often. Thanks for sharing your life lessons and struggles. I know the people who contact you are desperate to talk to someone who can relate to the toughest news many of them have ever had to face. To have someone who lives it be honest and open and compassionate and not judgmental must be a huge blessing in an incredibly stressful time. Another gift that your sweet boy has tought. There is enough judgment and pain in the world wihtout us piling on to each other on what are truly difficult and personal decisions. God Bless you and your family.

Karen in NC

jocalyn said...

hey! just getting caught up. not sure why i don't know when you blog...anyway, wanted to let you know that this chair that comes out and down can be installed in any minivan. mdcp pays for it. i have a friend in arlington that has it, and it's been great. i still think jude and kendall are small enough to lift though, and since a van modification is a one time thing, you should consider waiting. i got my van instead of an suv over a year ago anticipating this exact chair. again, talk to your mdcp caseworker!!!!