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.

August 28, 2009

Growing Boys

Charlie gets Theological!
Ambrose without nasal cannula


video

August 05, 2009



Well, the last couple of weeks have been very busy. We have multiple medical appointments each week, 6 so far this week. Even when we're home all day, it's non-stop action from dawn (or earlier) until dusk (or later).

We have hired a nanny to come to the house and keep the boys during the day since I will return to work next week. My feelings about this alternate between relief and guilt. I know the kids will be in good hands for the few hours that I will be gone; the nanny is both competent and confident.

As for the boys, they're doing well. John Paul was able to spend a few days camping at the beach with Grandpa Metzger. He and Daddy are just finishing the Swiss Family Robinson, his first non-picture book.

Josef has bloomed into quite the helper/entertainer for the twins. He talks to them, shakes rattles, dances and sings silly songs to keep them happy. He learned all thses tricks from his Daddy.

Charlie is fat (comparatively) and happy. He is very social, talking and laughing with anyone who will listen. At his 6 month well-baby check-up on Monday, he weighed 11 lbs, 11 oz which is the 25tn percentile for his adjusted age (3 months).

Ambrose weighs 9 lbs, 14 oz which is less than 5th percentile, but he is gaining weight. Both twins are 23" long. Ambrose is still at 1/4 lmp of oxygen, but sating in the high 90s. We're giving him a break from the oral feedings until we can wean him from the oxygen. In the meantime, he takes 10mL thickened milk from a bottle once or twice a day just so he doesn't forget how to swallow. In 3 weeks, his hip will be re-examined by the orthopedic to see if the Pavlick harness is doing it's job. Ambrose qualifies for benefits with the AZ Early Intervention Program. They determined he has a 25-50% delay in several developmental areas. These are all because of his medical issues, and will resolve once his health improves, but it qualifies him for PT OT and speech therapy.

Saturday, August 1, we took Ambrose to a miracle healing service led by Damian Stayne. His ministry boasts over 30,000 healings in the last 5 years alone. Although Ambrose, and Charlie for that matter, are already miracle babies, we thought it was worth a shot if we could get just one more for his lungs or hip or swallow. But at the same time, these are all things that can be cured naturaly or from therapy, and don't require a miracle. We are greateful for that much.

The boys are looking forward to a visit from one of their NyICU nurses; Nurse Becky is comig over for a visit.

-Gina