Picture Post

Because they are too cute not to post...

Bennett is here!

     

Bennett Riley Turner

October 16, 2014 ~ 1:18 am

6 lbs 12 oz ~ 19.5 inches

Happy Birthday Bennett Riley Turner!  For such a long pregnancy filled with bedrest, genetic testing, bedrest, weekly ultrasounds, worrying, more bedrest, two early labor scares, medications, bedrest, dieting, bedrest, etc...  You are truly perfect and we love you so much!  I am SOOOOO very proud of my sister for going through this pregnancy with a positive outlook and thankful she was able to carry him to 37 weeks.  God is good in so many ways, and Bennett only has a soft cleft palate and is otherwise a completely perfect and healthy little boy.  Marie and Trevor will be meeting with the surgeons soon to figure out the next step to correct his palate.  Poor Emily is getting outnumbered by all the boys on this side of the family!  But that's ok because I think she enjoys being the princess.  ;)  

Congratulations Marie and Trevor!  We love you Bennett!

Matt update

     

     So as luck would have it,  Matt's regular doctor was OUT of the COUNTRY during his fever/illness.  We ended up seeing a different pediatrician in the practice who is equally as great but very unfamiliar with Matt's history.  He decided to do a full workup as usual (blood testing and urine testing) along with antibiotic shots.  He did give us steroids based on the fact we are trying to rule out the PFAPA as previously mentioned on a  post.  The nurses did GREAT and got everything not the first attempt-- however, this is the second urine cath Matt has had done and when he went pee afterwards, it hurt.... so then he decide to REFUSE to go.  How in the world does a 19m old refuse to go pee!!!!?!?!??  He did though.  For almost 17 hours...  At 4am, I gave up and headed to the ER because he was so uncomfortable, in pain, and I had tried everything I knew to do at home.  The sweet ER nurses helped me hold my child in a sink of warm water until he peed while singing songs and blowing bubbles for him.  He screamed the whole time!  They went way above and beyond their job description that night comforting and taking care of not only my child, but this sleep-deprived and stressed out mama as well.  It took about 24 hours for him to pee normally again after this, but he did GO which was the best thing.  If he had not gone, we would have ended up with a Foley catheter in place for an entire week!   So that being said, the fever lasted about a total of 4 days this time around and was gone after 24 hours on the steroids.  Does he have PFAPA?  Only time will tell-- but his lab work was crazy high with infection/inflammation markers and definitely made me a super worried mama this time around.  I have joined a PFAPA support group and one of the dad's on the group described his daughter as "the sickest, healthiest looking person".  Those are words straight from my mouth!!!  That is exactly how I describe Matt to other people.  For now, I will keep tracking his fevers and symptoms as this is the only way to diagnose this syndrome.
     On a side note, our children are now out of daycare and we have finally hired a nanny!  She is great, they love her, and we are super happy having them home.  I wish Matt could have more interaction with kids because Lord knows he needs it, but this is definitely the best thing we could do for him right now since his immune system is still pretty low.  Continued prayers appreciated for him as we move forward in figuring out what keeps causing his little body to get so sick every month!

Watching Cartoon with his feverish little self...

FINALLY asleep and fever free after an exhausting day, night, day...

My Dancing Princess

Parents night at dance class is one of my favorite things to attend as a mom.  This little girl LOVES to dance and I absolutely LOVE watching her in return.  She definitely has my heart!!!

PFAPA

     P what???  PFAPA.  Yes, I am learning too.  We are now trying to "rule out" this syndrome on Matt.  PFAPA stands for Periodic Fever Aphthous Stomatitis Pharyngitits Adenitis syndrome.  It is supposedly also known as Marshall's syndrome if that helps.  It is a rare, possibly genetic disease but still one that he will OUTGROW at least!  They still think he has THI (transient hypogammaglobunemia of infancy), but now we are adding this to our list of "let's see if Matt has this".  When I was first told about it, I thought to myself, "nah, he doesn't have that-- he just gets sick a lot because his IGG is low."  But the more I have thought about it, the more I think I guess it is a possibility he could also have this this based on his symptoms.  Needless to say, Matt started running a very LOW fever overnight of 100 after being extremely irritable yesterday (which usually means he doesn't feel well).  I tried to brush it off but when it spiked to 103 this afternoon, I had to face the facts that he is sick again.  So more testing, meds, etc. tomorrow morning!    I promise I don't have Munchausen's disease (although I could see why some people may think that because, thankfully, my little buddy looks completely fine)!  I will continue to post updates on Matt-- we may never find a clear or direct answer to what constantly makes my sweet baby sick- but I am fine with this as long as it doesn't last forever.   Click HERE for a link that explains more about PFAPA.



     And one more thing--- his CT scan from a few weeks ago was absolutely, positively CLEAR with no bad things to report!  He will "outgrow" his little airway anomaly and it should not cause any harm to him whatsoever.  That is definitely a great thing!