Some have no clue

Well I thought I would get on and give a quick update or least I think it's going to be quick...Braelyn is wiggling so no telling how far I'll get...I swear this little boy knows exactly when you want to get something done and begins wiggling and and making grunts to let you know it's not going to happen!! Well you may not have noticed the break in this blog, but a diaper has been changed and a very spoiled little boy was very adament about being ROCKED back to sleep...So I'll try again.

Actually when I sat down to write, I was a little upset, but I think Braelyn knew that too and taking care of him has taken some of the frustation out of my thoughts.

Today was very frustrating..I can't believe that Braelyn's health and progress would be jeopardized all in the name of getting a referral...We had to choose a pediatrician here, for his PCP (primary care physician), even though he will be followed in Little Rock at the high risk clinic...It really makes no sense to us., but we signed up and took him to our local "chosen doctor" when we first brought him home, otherwise they would not give referrals to home health, or physical therapy, or the high risk, clinic, or the eye doctor..or to anyone else for that matter. Well guess what, it's been just over a month and only 1 referral has been done and that is the eye doctor. We now know WHY it's taken this long to get his physical and speech therapy started, NO REFERRAL WAS SENT...and today our home health nurse called and informed us that she was not abe to come check on Braelyn, because NO REFERRAL had been sent and we also learned that we would have travel the 2 hours to little rock to the high risk clinic on the 27th only to be told AGAIN, that NO REFERRAL had been sent and Braelyn would not be able to be seen...A COMPLETE WASTE OF 5 HOURS of oxygen!!!! Sooo we called the pediatrician to find out why and they said, well it looks as if it hasn't been done...DUUUHHHH!!! and NOW they decide that THEY need to see him AGAIN, BEFORE they'll send them...So guess where we are going tomorrow? We had asked if they would just fax it to home health so that they could come today anyway and their answer, and may I add rudely given, was NO!! They said they didn't have any up-dated weights on him, even though that is what home health has been doing, (and we thought passing theinfo on) every week!! I'm not sure if THIS is going to be the right Pediatrician for us!!! but we will go tomorrow and then look into our options!! It just felt like Braelyn was being held hostage to me!! These people here have absolutely NO IDEA what this little boy has been thru!! They have absolutely no idea what it has been like for his momma and our family to go through this whole thing! I really have no idea what they will be able to provide us, (EXCEPT A REFERRAL) because Braelyn is being followed by so many other specialists. With the hemorrhage in his eyes, we don't like taking him out in the sun, he really doesn't even like bright indoor lights right now...We are taking no pictures with flashes right now......and we only have a limited amount of oxygen that is authorized each month..2 big ones and 2 little ones. We will use 12 hours of that next week for the two different specialist visits in little rock. Because of the eye doctor visits this month we have already used up the two little tanks and a piece of one big tank!!

I don't know...it's just soo frustrating...I can't wait to see what was soooo important tomorrow that HE HAD to be brought in, I do know that they will know exactly how I feel before I leave there!!! I just hope I don't cry, cause I'm telling you this is soooo overwhelming sometimes that I just want to cry or scream extremely loud!!

Some of this emotions is knowing that we have this eye issue going on! Braelyn is perfect to us, no matter what is going on!! His smile just completely and melts our hearts!! No matter how tired, how frustrated, how worn out I feel, I just want to hold him and talk to him and let him know just how much he is loved and how blessed we are that God has given us this miracle!!!

Well I guess this isn't as quick as I thought it was going to be and I still have to post the few phone pics we took this week, so I will end it here...Ya know just being able to have a place to go and release all that is bottled up makes you feel soo much better....

To those who have walked this journey before us and found your way to Braelyn's page and left such encouraging words. THANK YOU!! You have no idea how much your words help us!

And of course, Not to leave out friends and family, who also have helped us so much...Thank You and we love you!!

And finally to those who find themselves just starting this journey....Don't give up, no matter what...Times will get really hard...but your baby needs you...We thought coming home would take care of everything, but we still face trials, We do know though that Braelyn needs us and we won't give up, NEVER!!!

HUGS....Granny Lorrie