May 29th, 2009

We have a date for Carver's T&A removal.  He will have them removed 6/10/09.  I dread getting this done, but can't wait for it to be over.  We check in at 5:00am.  I don't know why they always want them there so stinkin early.  He will have to stay at least 1 night.  I'm hoping that every thing goes well and he can go home the next morning.  

If you know anyone that is looking for some really cute Peg Perego Primo Viaggio Sip - Revi Orange car seats, I'm selling Kinnick and Carver's on Craigslist.  We paid $275.00 each and I'm selling them for $175.00 each.  They are the cutest car seats and they still look brand new.  We've never fed K&C in them, so they look like they just came out of the box (which I still have along with instruction manuals - I'm a pack rat).   If they want pictures, have them email me and I'll send pictures.

May 27th, 2009

I don't have a lot of information to pass on, yet.  We're still waiting for Carver to be scheduled for his T&A's to be removed.  I'm not sure what's taking so long for this to be scheduled.  Normally, they do this as out-patient, but due to Carver's medical history, they are wanting it done in the hospital with a minimum of 1 overnight stay.  I figured that I will call again tomorrow to see what the holdup is all about.  I talked to them yesterday and they thought they could get it scheduled next week.  Carver continues to have blue spells, and they are scaring the crap out of us.  They aren't daily, so you get a little comfortable after a few days, and then he has another one.  So, the sooner these T&A's are out, the better I will feel.

Nurse Jane had her surgery today to remove the cancer in her breast.  She will be out for 4-6 weeks.  We already miss her.  Please say an extra prayer for Jane.  She's a wonderful lady with a lot of love to give.

May 20th, 2009

The new car seats arrived today!  They take up the whole second row of seats in our Yukon XL.  I don't know how people fit these things in cars.  Of course, ours are rear facing and reclined, so that probably makes a difference.

Today, we met the ENT that is going to remove Carver's Tonsils and Adenoids.  He's going to check the schedule and get Carver's surgery scheduled as soon as possible.  He said that we should expect to be in the Hospital for at least one night, but it could likely be longer - I'm bummed about being in the hospital for even an hour.  He said that the Sleep Study results indicated that 50% of Carver's Apnea is due to obstructive Sleep Apnea and the other 50% is due to Central Sleep Apnea.  When I asked what Central Sleep Apnea was, he told me that the brain forgets to tell the lungs that he needs to breath.  He said this is common in Spastic CP kids.  He said that sometimes removing the T&A's will cause the Central Sleep Apnea to improve or go away.  They believe that some of the Central Sleep Apnea is triggered by the obstruction.  Obviously, the hope is that all of the Sleep Apnea will go away or a least improve.  I asked why it has gotten worse lately.  He said that he really doesn't have an answer, but suggested that even a sore throat could cause enough swelling to push him over the edge based on the size of his Tonsils.  Carver has had a slight cold the last few weeks/month, so this seems to make sense.  I asked why they needed to remove both the T&A's and he said that many times when they remove large Tonsils and leave the Adenoids, the Adenoids grow down causing add'l obstruction.  When they remove the Adenoids and not the Tonsils, the Tonsils will grow causing add'l obstruction.  In addition, he said that typically both are causing the obstruction and that if the Tonsils are large that normally the Adenoids are equally large.  Since Carver's Tonsils are 3+ (scale is 1-4 with 4 being the largest possible), he believes by removing both the T&A's we should see improvement.  I sure hope they're right, because this Sleep Apnea thing is really scary stuff.

Our Pulmanologist said that we will have to wait 4-6 weeks between surgeries, so Carver will have to wait a while to get his second ear.  Another bummer, but obviously the Sleep Apnea issue takes precedence over the ear.

May 13th, 2009

Today we received the results of Carver's Sleep Study.  He has severe obstructive sleep apnea.  They want to remove his tonsils and adenoids right away.  I have a consultation with the ENT next Wednesday.  So, I'm guessing that we're going to have to push his CI to next month.  I don't think that it's a good idea to do 2 big surgeries back-to-back.  I'm going to talk to each of the doctors to get their opinions.  On top of this, I really need to be going back to MI for more eye surgery.  Carver's cataract is getting worse on his left eye and he will need to have the lens removed.  I'm a little overwhelmed with the thought of 3 different surgeries for one child.  All of the surgeries need done ASAP, soooooo which comes first and how far apart do they need to be??  

Kinnick has started letting loose and taking steps on her own.  She's now taking 4-5 steps without help.  I think she'll be walking within another month.

Kinnick and Carver had their 2 year old check-ups yesterday.  They are both growing at their own pace.  They're in the lowest of percentiles, but on the charts.

Kinnick

20 lbs  <1%

30 7/8 in tall 1%

44 3/4 cm head <3%

Carver

21.4 lbs <1%

31 1/2 in tall 1%

45 cm head <3%

Kinnick and Carver have officially outgrown their infant car seats.  Due to their special needs, an organization (Kansas Safe Kids) is providing new car seats for Kinnick and Carver.  We should get them next week.  They are Britax Boulevard car seats - a very reputable car seat that should allow them to continue to sit rear facing until Carver is able to sit without help and Kinnick is able to get a little more upper body strength.  These car seats also recline so that Carver's head doesn't flop down or over.  He'll be able to ride similar to the way he rides in his infant car seat.  This is a very generous donation - if purchased, they cost around $310.00 per seat.  This helps us tremendously with the current economy and the effects the economy has had on our income.  We feel very blessed. 

Mother's Day 2009

Did I mention how wonderful my sister and brother-in-law are?  My sister, Tonya and her husband came over on Mother's Day and made my family a hot breakfast.  It was the best breakfast ever.  What a thoughtful gift for Mother's Day.   My sister is also a mother of two grown kids, yet she took the time to do something nice for me and my family on Mother's Day.    Thank you Tonya and Bill for being so good to us.  We really appreciate everything you do.

Devotional on Prayer

This devotional was on a friend's blog and I couldn't help but share it with you all.  It says it all.....

Jesus told his disciples a parable to show them that they should always pray and not give up. Luke 18:1

The failure to persevere is the most common problem in prayer and intercession. We begin to pray for something, raising our petitions for a day, a week, or even a month, but then if we have not received a definite answer, we quickly give up and stop praying for it altogether.

This is a mistake with deadly consequences and is simply a trap where we begin many things but never see them completed. It leads to ruin in every area of life. People who get into the habit of starting without ever finishing form the habit of failure. And those who begin praying about something without ever praying it through to a successful conclusion form the same habit in prayer. Giving up is admitting failure and defeat. Defeat then leads to discouragement and doubt in the power of prayer, and that is fatal to the success of a person's prayer life.

People often ask, "How long should I pray? Shouldn't I come to the place where I stop praying and leave the matter in God's hands?"

The only answer is this: 
Pray until what you pray for has been accomplished or until you have complete assurance in your heart that it will be (accomplished).

Only when one of these two conditions has been met is it safe to stop persisting in prayer, for prayer not only is calling upon God but it is also a battle with Satan. And because God uses our intercession as a mighty weapon of victory in the conflict, He alone must decide when it is safe to cease from petitioning. Therefore we dare not stop praying until either the answer itself has come or we receive assurance it will come.

In the first instance, we stop because we actually see the answer. In the second, we stop because we believe, and faith in our hearts is as trustworthy as the sight of our eyes, for it is "faith from God" and the "faith of God" that we have within us.

As we live a life of prayer, we will more and more come to experience and recognize this God-given assurance. We will know when to quietly rest in it or when to continue praying until we receive His answer.

May 7th, 2009

Today, we received the results of Carver's VEP (visual evoked potential).  This was an eye test that told whether or not anything was getting from the eye to the brain.  We were looking for the lowest level wave form - P100 wave form.  There was no wave form present in either eye.  What does this mean?  If the P100 wave form is not present, there is no vision.  However, for the test to be accurate, the front of the eye has to be in tact and in good shape.  Well, Carver's right eye looks really good and should be a good eye - retina is fully attached with minimal scar tissue, the lens is clear, and the cornea is clear.  The problem with this eye is a bad optic nerve.  Our last report from Michigan mentioned a pallor optic nerve - meaning a damaged optic nerve.  It is hard to tell how much damage is there.  The VEP confirmed that the damage is severe enough to cause him to have no vision is this eye.  Carver's left eye is not in good shape - the retina is only attached around the edges, the lens is developing a cataract, and there is a sponge behind the eye.  So, the VEP on the left eye can not be validated.  You need a clear path to the optic nerve in order to get a clear path to the brain.  So, we can dismiss the test for now.  We believe that Carver is at least seeing lights and shadows from this eye.  The VEP can not confirm or deny this.  We will continue to work on this eye until something changes that indicates no vision.

Monday evening Carver is going in for a sleep study.  It will be nice to figure out what's going on with all of these apnea spells.  The good news is that the Neurologist does not believe the apnea spells are related to anything neurological or any of the medicines that he is taking.  It will take a couple of weeks to get the results of the test.

We're counting the days till CI activation #2 on May 27th!!

Kinnick's big news..... today she said bye bye!  I hope this is the beginning of words.

My sister and me

Having micro preemie twins is a whole lot of work.  However, my sister has never left me alone.  I can always count on my sister to help when I need her.  She has prepared meals, taken care of Kinnick and Carver while we took much needed time away, and she always has time to spend with our 3 year old, Hayden.  She's just been so good to me.  I don't know what I would do without her.   

                  Tonya (my sister) and Me

Tonya recently joined the 40's club, and  I was there to welcome her.  We're the same age for about 3 months.   I love you, Tonya!  Thanks for everything you do for us.

May 2nd, 2009

One of our SLP's wanted Kinnick to be working on something more "age appropriate".  Most of her toys light up or make noise (due to her being blind).  However, most toys that light up or make noise are directed toward younger children.  So, we're trying to focus more on shape sorting and putting together puzzles.  These are somewhat of a challenge when you can't use your vision to help.  Try blind folding yourself and put together a puzzle - not easy.  However, we have a puzzle that has textured pieces.  She's figured out how to take the puzzle apart.  We just need to figure out how to put it back together.

Last week, we seen K&C's Pulmanologist.  She wants to get a little more aggressive about weening K&C off their oxygen.  The weather is starting to get nice - summer is always better for the lungs - no colds.  So, we reduced Kinnick's O2 to 1/2 lt.  So far, she's handling it very well.  We've always kept the oxygen saturations in the upper 90's.  She said that this really isn't that good for them anymore.  She said that as long as they are saturating at 92% or higher, that would be fine.  Right now, she's saturating in the upper 90's - no different then she was on 3/4 lt.  Of course, she just came off her antibiotic for the last cold/lung crud.  So, we're hoping to keep weening her.  We'll make changes every 2 weeks as long as things go well.  She also wants us to see a Pediatric ENT in Kansas City (about 3 1/2 hours from here) to have her throat scoped again to see if they have any suggestions for her paralyzed vocal cord that continues to cause a stridor.  She ordered a sleep study for Carver due to his apnea episodes that he continues to experience while sleeping.  He typically recovers on his own within a couple of seconds.  However, a couple of weeks ago, we had the blue spell - meaning he was having a difficult time recovering from an episode.  She said that he is too old now to still be having apnea.  There are a couple of things that could be causing it.  He has very large tonsils and most likely equally large adenoids.   So, removing these may do the trick.  However, she warned me that it is possible that this won't make a difference.  His Spastic CP could be causing the problem.   The muscles don't like to work together all of the time and this could cause breathing issues like we've seen.   The sleep study will help identify what's going on - Is it Apnea?  Is it seizures?  Is he snoring a lot due to an obstruction related to the large tonsils and adenoids?  The sleep study should answer these questions.  He is scheduled for the sleep study on May 11th.  It will take about 2 weeks to get the results back.

Last, Carver is scheduled for his second CI.  The big day is May 27th!  We're really excited to get this done.  I can't wait until he has the full benefit of having both ears!

May 1st, 2009

We have some great news.  Nurse Jane seen her Surgeon today.  What was originally diagnosed as Stage 3 Breast Cancer has turned out to be Stage 1, Grade 3 Breast Cancer.  This is 100% curable.  She will still need to have the Breast removed and reconstructive surgery, but this should cure her.  There is still some more studies that need to be done on her MRI, but they aren't expecting anything new.  It is still possible that the cancer made it to they lymph nodes, but not likely.

Thank you for the Prayers!  We may not see Jane's smiling face for a few weeks during surgery/recovery, but we expect to see it for a long time.  Thanks be to God!