Thursday, March 5, 2009

Our appointment was nothing new on Tuesday at CHLA. The cranial surgeon we met with confirmed that another helmet would not be helpful and that surgery at this point would be too risky. He did say that once Jonah's head growth stops (by age 5-8 usually) we could do a procedure that is less invasive where they inject bone filling underneath the scalp to fill in the areas of the head that need shaping. I think Shane and I feel by then Jonah's full head of hair will help matters and a surgery of such nature will not be necessary.

We also met with our new feeding therapist through Affiliated Speech on Wednesday. She has her own take on feeding but I did like her. She is more in to using real food with the boys which is ok with me as that is obviously the eventual goal that they be comfortable enough to eat table food. However, she isn't much in to the NUK brushing, etc. which I still think is too helpful for Jonah to stop. She wants to see the boys once a week on Wednesdays. Just another appointment to add to our schedule. =) I think right now the only day without 1-2 appointments is Thursday. Although hectic I try to take the perspective that at least my days are full and I am getting out of the house.

Tomorrow our infant specialist comes at 8:15 and then we are off to PT.

My dad and I are attempting to stain our back fence while my Mom is here to help. I am trying to get in big projects before my dad leaves in April. My two-person job will become one and big projects will be out the door.

My good father today looked at me and very sadly said, "What will I do when I have to leave these boys and go home?" We will miss him but he has already promised to return come June to help again which we are so grateful for.

We found out neither our insurance nor Kern Regional will help pay for the costs of the Wingbo. Christi with Blind Babies agreed to let us keep hers for one more month and hopefully by that time we'll have found one on Ebay or Amazon.

We are soon switching the boys to Kid Essentials, a special high calorie formula. It has about 45 calories an ounce. We will officially be off infant formula and Benecalorie and hopefully the boys will enjoy the vanilla and strawberry flavors of this new formula. Pediasure does not have enough calories nor does skim milk. We did our research and found that for the price of Pediasure and Benecalorie we could get more Kid Essentials (although don't get me wrong, Kids Essentials is no bargain). I also liked the idea of the Kid Essentials already having the calories as the Benecalorie sets up and is very oil like in texture.

Saturday we have Noah's Pulmonology Clinic. They were holding a one time Saturday clinic and it was either that or wait until May which was too far out for a check up. The good news will be that Noah has weaned down to the 1/2 liter during the day which his Pulmonologist wanted when we last met. I am still sad he is not completely off as I was looking forward to going to church without the oxygen in tow but at least he is getting there.

I just looked at our clock and it is already past 10 o'clock. Time to get some rest! I will update our blog this weekend. God bless.

2 comments:

Jill said...

Sending some love your way.

Renee said...

Your Dad is my hero. He sounds so much like my father... there for his family in a heartbeat. Take lots of pictures and get lots of hugs. :-D