Sunday, July 19, 2009

Josh, Steff and House Sale updates

Josh's current condition

Josh seems to be nice and stable. His incisions are healing nicely. All the tapes have come off and the stitches dissolved. Josh was comfortable enough with them that he took off his shirt to get in the swimming pool Friday to play in the water.

Josh still gets very sweaty and his oxygen and carbon dioxide levels still do not stay within normal limits for long periods if he is off of his ventilator. But we are comfortable letting him off for as long as an hour or two as long as he's good and awake and we are close to him, watching for signs of trouble.

Josh's Latest Doctor Visit

We went to see a physician assistant (Kelly Keller) of Joshua's pediatric endocrinologist (Dr. Mark Danney) on Thursday afternoon. Ms. Keller checked his height and weight and looked to see if there were any signs yet of puberty. Since Joshua is coming up on his 13th birthday, it is expected he should be experiencing some changes in his body that have not yet begun. These changes happen usually between the ages of 12 and 14 in boys.

I asked what would need to be done if Joshua did not begin puberty soon. Ms. Keller told me that if Joshua did not develop naturally, he would need to get testosterone.

Because Joshua was not producing growth hormones on his own (at least not enough to do the job), we had to start giving Josh the human growth hormone in the form of nearly daily injections. We began those more than 2 years ago. And they have really done a great job in helping him grow taller. He is now up to almost 5 ft 1 inch tall.

The testosterone too would be done through injections. But unlike the injections of growth hormone he receives now, these would not be daily but once a month. And they would be intermuscular (IM) instead of subcutaneous (subQ). The testosterone is thick and has to be given in a bigger, longer needle. They are given at the top of the buttocks and they hurt. But we will not need to worry about those for at least another year or so as they do not prescribe testosterone until at least age 14.

So, we will pray that Joshua's body produces enough of this on its own so he will not have to get these painful shots. I sure don't want to have to give them (his nurses could do this but I know Josh would rather me do it if he has to have them) and I'm sure even though Josh has a very high pain threshold, these would be no fun to get.

Ms. Keller said Josh looked to be doing well and she did not feel there was any changes to medications needed at this time. In fact, she decided not to draw blood for lab work at this visit but would let him wait until the next time he goes to see her - in three months.

Josh next scheduled doctor's visit

We go Tuesday morning (July 21st) to see Dr. Kelly Smith, Josh's pulmonologist (lung doctor). This is the doctor who will be responsible for getting us started and overseeing us using the new diaphragmatic pacemakers Josh got implanted back in June. The surgeon had said he would call Dr. Smith and let him know and put him in touch with the representatives from Avery Labs (who make the pacemakers). That way Dr. Smith can get prepared for this new responsibility.

So, we expect to talk to Dr. Smith on Tuesday about when and how we begin using Josh's pacemakers.

We also plan to talk to him about doctor's orders for school. The school district needs orders with specific instructions for a nurse so they know what qualifications will be necessary as they hire someone for Josh for the upcoming school year.

Dr. Smith usually has Josh take PFTs (Pumonary Function Tests) and has a dietician meet with us to discuss ways to help Josh lose weight. We know his weight is still an issue, but Joshua usually makes very good choices about his foods and drinks, so I'm not sure how much benefit that will be.

Latest on Steffany

Steffany is 14 weeks pregnant today (Sunday, July 19th). I believe her morning sickness is tapering off mostly. She is still pretty moody.

She and her fiance, Bryan are still planning to get married. She was given her wedding dress about a week ago and is with her bridesmaids (my sister and one of her good friends) at David's Bridal looking at bridesmaid dresses right now.

Money is tight on all fronts, so this actual wedding will likely be very small with very few decorations or guests. In fact, they have even talked about just going before a justice of the peace to get married and plan for a bigger event for maybe their first anniversary. But nothing is set in stone yet, so when I know for sure, I'll let everybody else know.

Steffany did spend this past week at church youth camp (her last year to get to do that as she will be mother to a tiny baby at this time next year). Here is a link to a video from youth camp:

Latest on Sale of our House

Our house is still on the market (since March). We have now had 11 viewings. This weekend, we had 2. We got feedback from a showing on Friday evening that sounded very positive. They stated they "liked the plan of the house and the condition was adequate." They are looking at "neighborhood amenities."

And there has actually been a change to the neighborhood amenities. Our subdivision broke ground last week on a new park that may also end up including a swimming pool. The park will go in in phases, with the first one to include a nice playscape. That phase should be complete by October.

Here is a link to our Homeowner's Association website where there is pictures of the plans for the park and picture of the playscape:

I emailed our realtor to make sure he updated the information and pass that on to the realtors who showed our house. And I also told him James and I had decided to reduce the price of our house from $165,000 to $159,000. We hope that will help speed up the sale of the house so we can get moved hopefully before school starts the end of August.

We'll keep you posted!

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