Saturday, February 18, 2012

Sorry so late...Little Man's update...

Sorry, life is a crazy busy roller coaster these days, so I am now just getting to Little man's update on how his appointment went last Wednesday.  It was a long exhausting day but we survived it, I'm sure it will get easier as we make the trip every 8 weeks for many many months ahead of us.  We left home around 5 am and just made it to his appointment at 9am (I even had some minutes to grab a muffin before his appointment) 

Here are some cute faces of Little Man as we were waiting...

Well, it seemed like forever that we waited in the exam room before his procedure, but after 2 hours we were all ready.  Thankfully his procedure didn't take long and daddy actually was able to hold him during it.  His laser treatment doesn't hurt too much the doctors say.  It feels like a flick of the finger, then for a couple days it feels like a very minor sunburn.  He doesn't seem to mind it at all. He sleeps on it and doesn't act like he is in pain.  This is  very comforting because even hearing his cry during the procedure made me want to cry myself.  During his procedure I stayed out of the room, knelt, and prayed.  I prayed I could comfort him as I was unable to comfort him after his circumcision.  He sometimes struggles with nursing (especially after he has a bottle, which he did that morning in the car)  He refused to nurse before his treatment.  So I was praying that he would find success in nursing and that it would comfort him.  Well, his procedure lasted no longer than 2 minutes, yes just 2 minutes.  Then the doctor gave me my little man and he successfully nursed and was comforted!! YES, a HUGE answer to prayer.  It all went very well, and he is healing up nicely.  He looked like he had polka dots on his face.  In order to treat everything on his head, next time we will have to give our little man his first hair cut.  I'm thinking this will be fun :) 

Here is a pic of what he looks like after treatment.  They say the more bruising, the better.  As of today, a lot of them are healed up already. 

Please continue to keep Little Man in your prayers...

1.)  That he responds well to the laser treatment and will need fewer treatments than more. 

2.) He passes his eye test for glaucoma on Feb 29.

3.) That he doesn't have Sturge Weber Syndrome.  ( We will find out when we do the MRI at 6 months old)

4.) That his "episodes" will not be confirmed as seizures or anything else alarming.  He has had a few more, but it seems like it may be more of a breathing issue than a seizure.

Thank you for your prayers and support and caring for our Little Man!!

Tuesday, February 7, 2012

Praising The LORD!

Today some decisions were appointment was appointment was made!!  After our crazy week last week, I have been very emotionally exhausted and ready for a break from all of this choas!  Many things lie ahead but as of today some decisions are in the past!!  This may not be much but for me, it is!  We canceled Little man's MRI as two of his doctor's wanted to wait until six months of age.  (so we will keep everyone posted as to when that will be and what the results will be) This is so exciting for me because after last week, the last thing I wanted was to hear my baby scream in hunger for 7+ hours, be hooked up to an IV, be sedated, and taken from me for it.  I'm glad to say we had a very pleasing FAMILY day today as SuperDaddy took today off for the scheduled MRI that we didn't have to go to! I'm refreshed to say the least, in love with SuperDaddy, and love being Little Peanut's and Little Man's mommy.  Thank you Jesus for all you've given me!!

And for more exciting news...We got the approval letter from the Health Insurance to start treatment for Little Man's port wine stain!  And his appoinment will be next wednesday Feb 15 at 9am.  Yes, that means we have to leave Wausau no later than 5 am!!!! YIKES!!! But I'll do just about anything for my little man!

Thank you for all your prayers and support.  We lift our Little Man up to the Lord and pray his episodes are not seizures.  His neurologist is "waiting" for more to happen before admitting him to the hospital to run a longer EEG.  We pray that they stop and that we will not be admitted.  He hasn't had one since saturday night.  Please continue to pray for him.

And here's a cute picture of Peanut...


Thursday, February 2, 2012

Please be in prayer for our Little Man...

So much choas....I don't know how to start...sorry if this is hard to follow...

For those of you who do not know, our Little Man was born with a capillary malformation (aka Port Wine Stain-PWS) on the right side of his ear, face, neck, and head. 

Some may just think it is simply a birthmark, as we first did.  Apparently it's not.  This is not a very common thing as it only occurs in .3% of births worldwide.  Having this puts him at risk for having Sturge Weber Syndrome.  Sturge-Weber Syndrome  is a congenital, non-familial disorder of unknown incidence and cause. It is characterized by a congenital facial birthmark and neurological abnormalities.  Children with this Syndrome suffer from glaucoma, seizures, behavioral issues, learning disabilities, and muscle weakness on opposite side of PWS.  There is no treatment or cure for Sturge Weber Syndrome and no known cause.  During development in the first few days of conception something "mis-fires" and apparently this happens.  Our Little Man has not been confirmed on having this syndrome yet.  To confirm this an MRI/MRA is performed.  During this test, one must be sedated which poses risks to the baby. Therefore, his MRI will be done in Marshfield. There is currently a debate going on with his doctors as to when the test will be done.  We have been on a whirl wind roller coaster of an emotional ride regarding our dearest Little Man in the last few weeks regarding this test and treatment of the PWS. 

Yesterday we went to Milwaukee Children's Hospital to get a second opinion and answers questions on why and when we would get treatment for the PWS.  God is amazing how he works.  Just a little over 2 weeks ago, we had no clue what all of this was even about.  I was at Moms and More at church.  One of the ladies there saw our Little Man's PWS and asked, "is that a port wine stain?"  I was in complete shock, not many people know what he has.  I said yes and she continued to tell me that a friend of hers has a baby a little older than mine with the same thing!  Then a few days later, the mother of the other PWS baby calls me!!  This lady who was a complete stranger but dear sister in the Lord opened our eyes to the possibility of treating our son and finding out more information by seeing a wonderful specialist down at the Children's Hospital in Milwaukee.  I'm incredibly thankful for this woman contacting me and I praise the Lord he has opened these doors for us. 

We had many questions, many questions were answered, and some questions remain...

He had an eye test done at one week old and the findings were normal-no signs of glaucoma.  He has another eye test at the end of February to check again because glaucoma can start at anytime.  He has a better chance of not having it since he passed his first test.  Please pray he passes his second test. 

He also had a hearing test done to make sure it isn't affecting that as well.  He passed but hearing loss could develop overtime so he will possibly need that re-checked in the future.  But we praise the Lord that our Little Man can hear us today!

The PWS on the head, neck, and face is treatable with Laser Surgery. The ear doesn't respond well. The reason we are considering treating it is because when he is older it will grow, swell, and have blood pockets that form on the PWS.  The blood pockets do break open and get infected.  When this occurs many patients are put on antibiotics to get rid of the infections.  This can happen over and over again until laser treatment is done.  So to save him the struggles, pain, and suffering; it will be much easier treating him as an infant than making him get it done when he is older.  The treatments are done every 8 weeks and he will need anywhere from 5-12 treatments. (all done at the Milwaukee Children's Hospital) They can start treatment as soon as insurance pre-authorizes the treatment.  We are currently waiting for an approval letter in the mail.  It should be here in a week or two.  Please pray insurance approves us. 

Ok, now on to the scary stuff.... Our Little Man has been having a few "episodes" or "spells" it what the doctors call them.  He has had 6 of them in the last 2 weeks.  When he is sleeping, he starts breathing, shallow, and high-pitched; his head, eyes, and eyebrows start to tremor/shake (if eyes open they roll in the back of his head) then the weird breathing happens again.  These could be relatively normal baby stuff but it concerns the doctors and terrifies me.  I called his pediatrician today and she had me bring him into the clinic almost immediately, then sent me Marshfield for an EEG.  Thankfully the EEG came back normal.  However, he did not have one of his "episodes" during the test. So this is where the debate about when the MRI should be done comes in.  One doctor says it needs to be done NOW.  The neurologist and Milwaukee specialist usually waits until 6 months old to do the test.  However, because of these episodes, we are not sure when we should have it done.  The risk of testing to early means that he could still have Sturge Weber Syndrome but it won't show on the MRI until he is older.  Essentially they are looking for PWS on the brain, but in most cases it takes time for it to show.  So if we test him now, and it comes back that he doesn't have Sturge Weber than they will test again at 6 months.  If it confirms Sturge Weber, then we have our answer but doesn't change much of anything. This is because there is no cure for Sturge Weber.  They can just treat the consequences of the syndrome.  So do we sedate our little 3 month; which involves not eating for at least 7 hours, and IV, and him being put to sleep or do we wait until 6 months?  Please pray we can make a informed decision alongside his doctors and do the very best we can for our little man. 

I'm currently debating on getting a monitor for Little Man's crib to help ease the scariness of the "possible seizure" situation.  So if anyone has experience and would reccomend it, please let me know.  I was considering getting the AngelCare Video, sound, and Motion monitor.

Sorry it took so long to get the update online, thank you for your patience, prayers, and support.