Sleepy Boy

So sleepy, but happy to be snuggling with his blanket...

Almost there...

...and he's out...

This all occurred in about a five minute time span.  It was fun to watch the progression into sleep, especially because he usually fights it.

Faith

I recently had a conversation with my sister in which we were talking about babies.  She noticed that I have been pinning a bunch of baby things on Pinterest and was teasing me about it.  In all seriousness I told her that while we are not excluding the possibility of having another child, the time is not now.

Then tonight J and I were watching the latest episode of Bones.  Throughout the episode, Boothe had been going to the hospital and everything was kept really secretive, which got both the viewer and the characters worried that something was going on with Boothe or one of his kids.  At the end of the episode, we find out that Boothe had set up a carnival for kids with NF (Neurofibromatosis), and had been volunteering there.  He didn't want anyone to know because "charity should not be puffed up...real charity is anonymous."  Brennen was explaining to Cam that he didn't even want her (Brennen) to know.  Cam said that she had been worried about Christine (Boothe and Brennen's daughter) and Brennen said something that really hit me.  She said, "no, but she could.  It could happen to anyone."  

It could happen to anyone.  

I have accepted that I have a special needs child.  It was a hard road to acceptance, and every once in a while I will slip and wish for a normal life, but for the most part, I am happy.  I have a wonderful husband, and two beautiful children.  We have a home in a good neighborhood.  We have fabulous neighbors.  We have friends and family who love us.

I don't know how it is for other women out there, but for me, I feel that there is at least one more child waiting to come to our family--we are not yet complete.  The feeling is very strong...but I am afraid.  After two very rough pregnancies and tiny babies, I am afraid of what might happen with a third.  I have been assured by many doctors in various fields that what happened with Kai and Zuri are random events.  There was nothing that I did or didn't do that caused what happened to happen...but there is a small part of me that wonders if I had just eaten a little more broccoli and a little less ice cream...  

I have heard other moms of special needs children express a similar sentiment...there is a guilt inherent in having a child with special needs.  How I wish it weren't so!  These little angels are miracles from heaven.  I wouldn't trade what I have been given with Kai for anything. 

I have seen some of the best come out in people.  We were in Ikea and Kai's stroller wouldn't fit through an aisle, so a man and his older children actually moved some furniture out of the way so we could get through (I wasn't even going to attempt it, but he said they would make room for us).   People are a little bit kinder.  I have been able to connect with people on a deeper level than I would have ever believed.  Even with people who haven't had children with special needs. 

It could happen to anyone.   It happened to us.  I don't want fear to hold us back from our life.  If Kai continues to be stable and live a long life, then no time would be a "good" time to have another child.  I remember a General Conference talk a couple years ago (October 2011), Elder Neil A. Anderson asked a very poignant question involving families and children that has stuck with me.  He asked, "where is your faith?"  It was an answer to a prayer whether more children in the future was a possibility.  I knew at that moment that we will have more children when the time is right.  We just have to have faith.

PS This is in no way, shape or form an announcement, just something that has been on my mind

A Matter of the Heart

Last week one of our nurses noticed something very odd while Kai was sleeping.  His heart would speed up, slow down, and pause.  Since then we have been very diligent in listening to his heart.  We have discovered that when he is sleeping, it will have that unusual rhythm, but when he is awake it is normal.

We haven't taken him in to a cardiologist yet, but we (and some of our nurses) have done some research online.  From what we have been able to find, it looks as though it could be a relatively normal heart irregularity and will work itself out in time.  Hopefully that is the case, nevertheless, it is very disconcerting to hear.

Of all the issues that Kai has had, his heart has always been strong and healthy.  To have his heart basically pausing (or skipping a beat) is a little frightening.  I have noticed on his pulse oximeter machine that his heart rate will increase and then decrease while he is asleep, but it doesn't show every beat, so unless we were listening we wouldn't catch it.  We were given the cheap pink stethoscopes that they use in the NICU when Kai was released from the hospital.  They work fine for our purpose (listening to his lungs to make sure they are clear) but it is hard to hear his heartbeat through the sound of his breathing (and the machines).  What I would really like is to get a nice stethoscope so I can listen to everything much more clearly.  

Our pulse/ox machine went out a few weeks ago.  It stopped reading and kept saying "bad sensor."  The machine is "patient owned," meaning that we paid so much in rental cost that we now own the machine.  The machine itself has a two year warranty on it, so that if anything were to go wrong, they would take care of the replacement cost and give us a new one.  However, that warranty does not extend to the cord, and to replace the cord, it will cost two hundred dollars.

That cost wouldn't be so bad, except we just paid two hundred dollars on a medical bill from Kai's synegis shot (a vaccine for RSV).  In order to receive the synegis shot, we have to get pre-approval from Kai's insurances, which we received.  Or so we thought.  The vaccine comes in a series of five units of two shots each over a period of four or five months.  Kai is covered on two insurances, and his primary insurance took care of the $9,000+ (per unit!) part of the bill, and his second insurance should have taken care of the $100 copay (per shot and he gets two shots per unit), but they are saying that for the month of December (and just December) that he was on a different insurance.  We haven't switched insurances or made any changes--nor were we told that he would be switched temporarily and that we would need to get preapproval through that other insurance for December.  We have tried to appeal it and done all we could, but we have to pay the copay for the shots in December because they are denying the claim.  We have preapproval for all the other shots, which makes absolutely no sense to me, but they are not budging.

What a messed up system.  Long story short, we are working with insurance to get his pulse/ox machine replaced.  We got a new doctor order and since we have switched primary insurance since the order of the first machine, we have been told that we might get approval for the new machine--it has to do with the fact that the new insurance hasn't paid for the machine previously.  While we wait, however, we are without a working machine, which means we are guessing on Kai's oxygen levels, which can be dangerous.  Too much oxygen is just as damaging as too little oxygen.  Luckily, Kai has been fairly stable with the amount of oxygen that he needs.



Kai himself has been doing really well.  He is getting so big!  It is hard to believe that he started out at just over three pounds!  He is up to 26 pounds and has huge hands and feet.  I think that he will be tall.   Thankfully, he hasn't picked up the sickness (yet anyway) that we have been passing around here.  It has been almost of month of sickness here.  Zuri picked it up from preschool, passed it to me, I passed it to J, then she picked up another cold, and it is going around.  I will be so glad when we are all healthy again.

Developmentally, Kai is still at a three to five month old range.  He will smile when we smile at him, which is new.  I love it!  He is so full of love and is just so cuddly.  All we need to do is pick him up and hold him to calm him down when he is upset.  He will snuggle against us and bury his face into our chest.  It is the sweetest thing.  He has also been cuddling blankets more.  Sometimes all he needs to go to sleep is his blanket.  He will take it, bring it up to his face, roll to his side and fall right to sleep with his fingers in his mouth.

Kai still cannot hold up his head, roll onto his tummy, or grab his toes.  He is vocal, but does not form anything resembling words, nor does he consistently track toys or objects.  However, he is aware of the world, and is just go-with-the-flow.

I was thinking about that the other day, actually.  I am so grateful that Kai has such an easy going temperament.  Every day I haul him around, stick him in the car, give him a bath (yes--daily, he gets very stinky without a bath every day), and although we have a routine, he is constantly being picked up, maneuvered, and shifted around.  Unless he is tired, he doesn't care at all.  How hard it must be for parents (especially parents of special needs children) to have kids who cannot tolerate change!  I have been very blessed with children who are able to adapt to change well.  We have had to learn to be pretty structured, but things happen, such as moving, hospitalizations, new school routines, and more.  With all that Kai goes through during the day, it really is nice that he doesn't get fussy very often; it makes my day a little bit easier.