Wednesday, May 19, 2010

ED and PT Visit Follow-ups

Colton went to see the neurosurgeon yesterday.  The doctor was very happy to see how he was doing.  He has no explanation as to why his soft spot is so full, but said sometimes it just happens (even in non-shunted kids).  So for now, we will watch it.  And, even with this little bump in the road, Colton's neurosurgery check up will be in another three months.  Before that visit, he will have a "fast MRI."  As the doctor explained it, a "fast MRI" is a quick MRI used to get some basic shots of the ventricles, it doesn't require him to lie perfectly still or be sedated and there is no exposure to radiation. 

A fellow NICU mom, whose baby is still in the NICU, asked about why Sean qualified for Early Intervention (EI).  Both boys were evaluated because of their prematurity.  Colton is actually right where he should be for his adjusted age.  Because if this, Colton qualifies for their prevention program.  This means they will do monthly check ups to make sure he remains on track.  But, poor little Seanie is behind where he should be based on his adjusted age.  What does that mean?  He isn't doing what other 2 month old babies do.  This means that Sean meets the requirement for EI services.  Seanie will get weekly visits from the developmental specialist who will work with him, making sure he continues to progress.  He won't necessarily catch up in a few weeks or months.  He may continue to be behind for a few years.  So, for him, it won't be important that he is meeting milestones based on his adjusted age.  It will be important that he is progressing towards meeting each milestone and that he does eventaully meet them.  Now, as I have said before, Sean is a little guy who likes to do things on this own terms. 

Sean did get his PT evaluation today at Kaiser.  The PT didn't tell me anything I didn't already know about little Seanie.  She said, yes, physically, he's behind.  She gave us some suggestions on how to work with him: more tummy time (LOL! He hates tummy time and protests by falling asleep!) and play with him while he is on his side (encourages him to bring his hands in front of his face).  So, poor little Seanie may protest but he has to do his PT activities. 

I also mentioned to the PT that the neurosurgeon had encouraged us to get Colton to sleep looking towards the ceiling to help get rid of his preemie head.  She looked at his head and pointed out that it's not just that, but he puts pressure on the side of his head opposite of this shunt and that his little head is lopsided!  OMG!  Now we need to make sure he sleeps with his head straight and play with him to encourage him to put some pressure on the shunt.  And, so far, it's going great!  He is lying in bed with wedges next to his head to keep him looking forward.  LOL!  He hates it!  He is in there with a look on his face that says, "You can make me lie like this, but I am NOT going to sleep!"  Great!  The kid is as stubborn as me!

After the PT visit, we stopped by and the boys got to meet one of my favorite midwives (or midwitch - as she calls herself).  I did find out that she is going to be a Nana this fall and one of the other midwives, who we also visited with, is going to be a Mama in the fall.  I warned her to double check to make sure there weren't two babies in there.  LOL.  We had a nice long visit and I thought, at the end, she was going to try to take one, if not both, of the boys with her.   Good thing I brought Bubba with me as my muscle.  :)

Off to enjoy one of those delicious lactation cookies and snuggle with the poor baby that is being tortured by his positioning wedges.  Bad mommy . . . I've already given in . . .


  1. Thanks for the update! And the lactation cookie recipe (does it work? I smell like maple syrup from all the fenugreek, and poor Eli is already on 1/2 bm, 1/2 formula). Will he have to wear a helmet? My little nephew did because of a hematoma, and it straightened out in a month or two.

  2. The cookies worked for me. Fenugreek did not. We are hoping we can avoid the helment. We are working really hard to get him to sleep on the side he hasn't been.