Tuesday, November 29, 2011

Eli's long day!

Before I share an Eli update from today's Spina Bifida clinic, I want to share two quotes that have recently made a big impact on my life.

1) "God permits what he hates to achieve what he loves."  by Joni Eareckson Tada

2) "Some fears surface over and over again, especially fear of the future.  You tend to project yourself mentally into the next day, week, month, year, decade; and you visualize yourself coping badly in those times.  What you are seeing is a false image, because it doesn't include Me.  Those gloomy times that you imagine will not come to pass, since My presence will be with you at all times.

When a future-oriented worry assails you, capture it and disarm it by suffusing the Light of my Presence into that mental image.  Say to yourself, "Jesus will be with me then and there.  With His help, I can cope!"  Jesus Calling by Sarah Young

If the truth were told, I have been dreading today's date on the calendar since Eli was in the NICU.  The day he was discharged we met with the Spina Bifida Coordinator and several appointments were already scheduled for us.  Today was one of those.  For those not familiar with a "clinic" it is where you go in an exam room and all the doctors who are involved with your child's care round to you.  Its benefit is to help coordinate appointments so that you spend less time a the doctor's office.  In practicality this is great, but I find it to be somewhat overwhelming. 

Today following clinic Eli was set to have his yearly Urodynamics exam.  This is a test to check Kidney's, bladder, pressures, etc.  He will have it once a year for the next 7 years.  I have been worried about this test because he'd only had a kidney ultrasound at birth...you know and those kidney's are pretty important little organs!!!  It is that whole fear of the unknown thing....the standing there waiting for the big punch, the knock-out, the dreaded news.  Thankfully, the exam went really well.  Kev and I got to go into the procedure room with him.  The test det. that his kidneys looked good and that his bladder can empty completely on it's own.  There is no need at this point to catheterize or begin any meds or antibiotics.  He will have another kidney ultrasound in 6 months but for now we are good.  We were so thankful.

Earlier this morning prior to the Urodynamics test we saw the Neurosurgeon's NP.  Eli's little (somewhat large) head did another jump on the growth chart.  He had a MRI scheduled for next Thursday, but they decided to see it they could work him in today.  I have been dreading this MRI.  The thought of handing my baby over to some random nurse or tech for anesthesia is enough to cause my heart to flop.  It may not sound too bad until you go there in your mind with your own child....then it is just terrible. 

So we found out about the change in MRI this morning at 9:30 just as Eli was ready to eat his second meal of the day.  Then they told us the MRI wasn't until 2:00pm and that of course he couldn't eat until after it was over.  I knew it would be a very long day.  He was honestly such a trooper and cried some, but he handled it far better than I expected.  So, about 30 minutes before the MRI the NP came out and said that he would have to be admitted if they sedated him.  He had just met the 54 weeks from gestation requirement as of TODAY to not have to be admitted following sedation, but the anesthesiologist said he would still have to admit him(sorry if this is utterly confusing).  We found this out after waiting all day.  We opted to try our luck at an unsedated MRI and if not to sedate him as planned and just be admitted.  Eli was very tired at this point and had given up on eating...poor guy.  They let Kev go back with him and get this...they let him get on the table and go in the MRI with Eli.  Can you believe that?  No scary tech taking my baby off, no sedation, no needles, no overnight hospital stay.  They immediately sent the pics to the doc. to make sure they got just what they needed and they did.  We left quickly and I did my best to fill that little belly after about 10 hours without eating.

So, in talking with the Neuro NP this morning she said she would be really surprised if things were okay.  They saw the enough of a jump on the growth curve that they had been looking for and although they hoped things were stable, she said she was doubtful.  They even wanted to tentatively schedule us for surgery tomorrow!!  Kev and I said no, that even if it was needed we had to look at all of the options.  They were very sweet and accommodating. 

So about an hour after we returned home they called with the MRI results.  Kev took the call because I am not good with waiting for the news.  Good thing he was outside or I would have been saying, "what, huh, ask this, wait, are you sure," kinda thin... the whole time he was trying to get the information.  So as of now Eli's ventricles "look good."  Apparently he has extra axial fluid around the outside of the brain, but not in his ventricles.  This has caused the rising head circumference.  The hope is that his body will take care of it on it's own as he grows, if not he may still need a shunt for this, but at the time it is okay.  Talk about thankful!!!!  I feel like I experienced yet another miracle today.  I am thankful and still hopeful that we can avoid a shunt and so thankful that nothing needs to be done right here at Christmas time. 

What does God hate (not sure if God hates, but if he does I am sure it is the hurt, pain and suffering in the lives of His children), but he permits it because he loves (His glory being displayed on blogs, on facebook, through testimonies, and in the daily lives of weak and ordinary people.  Thank you Lord for getting us through this day.

Friday, November 25, 2011

Thanksgiving 2011 Recap

This year I am so thankful for many things.  Last Thanksgiving my life was in a really good place.  I was in my best shape physically due to really getting committed to running.  We had two healthy and beautiful little girls.  We had two "nice" paid off cars.  Kev had a good job and life was good.  Last thanksgiving I was very thankful for all that the Lord had blessed us with, but this year I feel my gratitude is even greater. 

The suffering that 2011 has brought has led my heart to overflowing gratefulness.  I am so thankful that God blessed us with another child.  I am so thankful that Kevin survived his horrible wreck in July.  I am so thankful to be at home and get to tuck my sweeties in their beds every night and not still in the hospital.  I am so thankful that even though Eli has lots of challenges ahead I can see the Lord's hand in his little life.

Just one little example is that in the past four months, Eli has been unable to bare any weight on his little legs.  Over the past few weeks he is beginning to be able to bare a little weight (when held up of course).  His little legs will give way and then he will push up through his knees.  I cannot tell you how proud it makes me.  I am still eagerly praying that one day I will see his little toes begin to move....for nothing is impossible with God. 

If you think about it Eli, has two big hurdles in the next two weeks.  First is a urodynamics test which will check his bladder, bowel, kidneys, etc.   It will look for reflux and will help us know what we need to do to keep his kidneys healthy.  He will have his first MRI the following week and that will let the docs know exactly what is going on in that little head.  I must admit that I will be glad to get this all behind us.  I am praying for healthy kidneys with normal pressure and stable ventricles. 

 Happy Thanksgiving!!

Monday, November 21, 2011

Eli's 4 month update

 Our little guy is four months (and some change...mommy is very late posting this).  
 At four months you weighed 13 lbs 6 oz.  You were 23 1/2 inches.  You have been doing some good growing and it is hard to believe how much you have grown since your arrival at 34 weeks.
 You are the best little guy.  You nurse 5-6 times a day and sleep from about 8pm until 6ish.  You are so easy going and laid back.  You rarely cry unless it is time to eat or you are overly tired.
 You love your big sissy's!!  They provide a lot of entertainment for you.
 Oh, and they are a tad bit CRAZY over you!!  Eliza has recently started calling you ( E-lie Ma-shoo)...that would be Eli Matthew!!  She still pronounces it with a short E! 

You like to sit up in the bumbo seat now.  Your PT said this was good practice.  You are getting close to being able to tripod sit.

 We have worked really hard to gain this head/neck strength.  We are so proud of you!
 You really like watching TV!!  You must be a boy!  Your hair is growing.  It looks like it will be strawberry blonde.
 Eli, I am so glad God gave you to us.  Your mommy is so proud of you!
Eli is doing really well.  We had another head check last week and thankfully his head growth got back on his old growth curve after a jump the month before.  I prayed and prayed and begged the Lord for this and I truly feel that He answered.  We have another check next week at our second spina bifida clinic day. He is scheduled to have an MRI in December.  I am not looking forward to him having to be put to sleep (the thought makes me want to cry, yet I know this is part of our reality). 

He will also have his first urodynamics test next week.  I am a somewhat anxious to find out what his little bladder and bowel are doing.  I am thankful that we have had four months of not cathing, but I am preparing myself for this possibility.

Happy four months sweet boy!

Friday, November 11, 2011

The Holding Tank

I am back sitting on a fresh new blog page as I do several days week.  I type a few words and quickly delete them, unsure of what to say.

Life is so busy. Kev and I often wonder how we can slow down and simplify our lives.  I often find myself longing for a smaller house with less things to clean, keep up with, and organize.  One thing is for sure...the hurried and cluttered life brings added stress into our home and family.

2011 has been such a different year for our family.  I feel like we are still in a holding pattern.  I am sure I have shared this before but Kev's full-time job ended on Aug. 12 of this year.  We found out they were closing his office just about a week after learning that Eli had spina bifida.  We had options for re-location and such, but at the time it just wasn't an option.  Kev had been ready to leave the sales world for a while and move towards a ministry job, so we took this as the exit we needed.  So, we are waiting, praying and looking.  The Lord continues to provide "odd" jobs such as painting, construction, and such that are keeping daddy pretty busy. 

I am so so so SO SO SO thankful that back in 2003 as a young married couple Kev got hooked on Dave Ramsey on talk radio.  Of course it didn't happen until we had tons of college debt, a new house, a brand new car and credit car debt for us to realize that we needed help.  Kev listened to Dave everyday on his drive to work.  He became passionate and zealous in the pursuit of becoming debt free.  If you know him you know what I am talking about (washing out ziplock bags...that is where I drew the line!!)  I was slower to join the bandwagon as I knew this meant us needing two salaries for longer than I might have wished and meant keeping to a detailed budget.  Throughout these years Kev worked extra jobs cleaning swimming pools and overtime and little by little we attacked our debt.  We both love to give and we determined early on that we wanted to be faithful to tithe and give as the Lord led us to do.  We saved, we gave and God blessed us in many ways.  We moved baby step by baby step and saved our emergency fund for the "what ifs" of life.

This year we are living in the "what ifs."  I am so thankful that Kev took leadership in this area of our lives because I am pretty sure I would have failed miserably.  In fact, the first month we set out to follow a very strict budget, I had to have my wisdom teeth out.  It was right at the beginning of the month and the procedure alone blew our budget for the entire month.  My thought was that we should just ditch the budget and start again the next month.  Kev didn't like my idea too much.  I cannot imagine the extra stress we would be under if we hadn't worked on this area of our lives.  I am so thankful that even though I am so ready to see what God has in store, we are experiencing God's blessing and provisions in many ways even though the process has been rough.
Eli got a good report this week on his hips and Eliza got her cast off and we are so thankful for that!  And because pictures make every post better....