Armed and dangerous . . .

The biggest news this week is the arrival of two teeth. It's possible we have an explanation for the whiney, difficult child we've been dealing with the past couple weeks. Somehow, I did not see this coming despite the signals Toby was sending out. It was a surprise to feel them fully erupted. Warning: be careful where you put your finger.

We did make the trip to Toledo yesterday. We revisited a few of our old hang-outs. The good people there are still busy saving babies and taking good care of parents. It was a strange but good feeling to be on the outside looking in this time.

The clinic's evaluation of Toby was overall positive. The only new recommendation is that he begin physical therapy to help with his large motor development. I have been concerned that he is starting to fall behind in this area. He does not crawl or even move around much. His therapist (the same exceptional one who worked with him in the NICU) says it is because of weakness in his trunk. This may be partly because of his surgery and partly because of the lack of proper exercise during his winter illnesses and, again, the surgery. We now have some ways to work with him and hopefully will get something set up through the therapists at the U of M.
She did say that he is doing well with his fine motor skills, which was good to hear.

His weight gain the past two weeks was a modest three ounces. That's a much lower rate than the almost ounce a day he was doing previously. The new feeding plan we were trying has not gone well. Toby takes very little from the bottle. He has been refusing solids. And he continues to have retching problems sometimes during his pump feedings. When that happens, I have to stop the feeding for a while. And loss of time equals less intake. The good news is that he has continued to gain. We will continue to work towards getting him on a plan that works better for him.

Toby's visit to Ann Arbor on Thursday went well. His initial style of g-tube has been replaced with a lower profile "button" with detachable tubing so that he can be free from some extra baggage when he's not using it. We're not enjoying the full benefit yet; he has been doing so much coughing and retching that I try to keep him vented as much as possible.

The nutritionist gave us a plan to try to get a more normal cycle of hunger and meals going. He is spending less time "on the pump" doing continuous feeds and trying more bottles. So far, he is doing great and happy with the change. He also needs to try more foods. Right now, he has an on-again off-again relationship with his cereal. The rhyme and reason of it are not apparent.

Weight was 16 lb 5 oz.
3 days, 3 more ounces- a good pattern for him to be on for catch-up growth.

And last, but certainly not least, his lungs are doing great. They turned off his oxygen for a few minutes and he maintained good sats. That's a definite improvement from past attempts which showed immediate and significant drops. There is some concern over his continued high heart rate. For now, though, the only changes made were some tweaks in medicine dosages to account for his new size.

Toby should get to enjoy another break now from doctor visits. Nothing more is scheduled until the 26th when he is to return to Toledo for evaluations by assorted nurses and therapists. Meanwhile, we will focus on feeding and growing- and enjoying any warm weather that comes our way.

Today was the visit to the pediatrician for his one year checkup. (And 5 shots- ouch!)
Toby weighed in at 16 lbs 2 oz and was 25 inches long. Not quite ready for the heavyweight division yet, but well on his way.

The last couple weeks have been the healthiest for Toby since last fall. For the past 4 - 5 months, even when he wasn't in the hospital or visiting the doctor, he's been fighting off something. Now he seems much healthier. His doctor says this, along with the weight gain, may tell us that his nutritional status is much improved. Another cause for thanksgiving.

Happy Birthday!!!!!!

Our hearts are full today of joy and thanksgiving. We can hardly believe the contrast between now and a year ago. Every day of the past year has been a gift and they have added up to a chestful of treasure. "My cup runneth over."




Next week, Toby has 3 doctor appointments and will be the time for all the medical updates. For now, we are enjoying the gift of today. What an extra-special treat to get outside and breathe the fresh air with the promise of spring and new life in it.

Happy Birthday, Toby! The Lord is good. We praise Him because you are fearfully and wonderfully made. All the days ordained for you were written in His book before one of them came to be and we praise Him for these first 365!
We thank Him also for the many, many people who joined the team of caregivers who made this year possible- doctoring and nursing and cleaning and caring for siblings and praying and giving and encouraging and so much more. You are appreciated and loved.
Hugs to all- hopefully soon in person.

(and Happy Birthday also to big brother, Zeke - - -24!)