August 30, 2009

Well, the last few weeks have been busy. Gina started back to work and, we have all been getting used to having a nanny at home while she is out winning bread.
Weekly weight checks by our visiting nurse show Ambrose is gaining weight adequately. He is currently 11#s and Charlie is 12#9oz. Also, both twins will be receiving the RSV shot soon.
Ambrose was recommended to DDD by AzEIP for PT, OT and speech therapy. He has also being recommended for Long Term Care and AHCCCHS, for financial aid.
He was seen by the g-tube surgeon; the site looks good, and she replaced MIC-KEY button, which is routine.
Ambrose followed up with the ortho and his hip appears to have healed on the x-ray, but an ultrasound is needed to confirm it. Once the hip heals, he will continue to wear his harness for as long as he had been wearing it before he can shed that.
He has also been seen by a GI specialist and Pulmonologist:
The GI doctor advised us to slow his feeds down to help combat his reflux - that way we can avoid having to prescribe a reflux drug. He also said we can try thickening his oral feeds with rice cereal as a substitute to the Simply Thick. The latter seemed to be aggravating his reflux, but he is still not very interested in any oral feedings. DDD's weekly speech therapy just started up last week, so we'll see how it goes.

The Pulmonologist tested Ambrose on room air for a few minutes to see how he does: pretty well, but not ready to shed the nasal canula yet. He will repeat the test once a month and when he sats well during an office visit, then we'll try him with an overnight study without the oxygen before weaning him altogether.

So no major changes with his health, but we expect slow progress with both the chronic lung disease and the oral aversion, which are our major hurdles right now.

Despite all this, Ambrose is a happy little boy and quite friendly and interactive. He and Charlie are so sweet and happy and funny little guys and bring so much joy to our hearts.
The big boys are managing. Usually the weekends provide an opportunity for "big boy" activities and outings, and we try to give each boy some individual attention every day, but it doesn't seem to be enough for the eldest. John Paul has been very challenging lately, both for us and for the nanny. Josef is happy almost all the time.


  1. We miss you so much!! In Barcelona by ourselves. HUGS & KISSES.
    MaMa & PaPa

  2. The boys look so cute!!I am glad you all are doing fine.I hope your parents had fun in Spain.It is apity we could not meet!!
    Take kare you all.

  3. Everyone looks so great! I can't believe how big they are getting:) I'll be thinking of Ambrose in the next week and hope everything goes well. Gina, good luck back at work. Don't let those girls be too hard on you. Say hi to everyone! -McKenna