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!

Tuesday, July 7, 2009

4th of July weekend

I'm still recovering from a long holiday weekend and it is already after midnight Monday (so that means it's already Tuesday... where does the time go).

Let's see... the last time I wrote a bit and posted pics was just after my daughter, Steffany's appointment for her sonogram. That was July 1st.

Since then, my son, Joshua, his nurse, Jenny, my parents and I drove to Houston on July 2nd to see Joshua's surgeon. This was his post operative appointment. We drove 3 hours to Houston, had a quick lunch at Golden Corral (becoming our pattern for these doctor appointments) then headed up Main Street to Memorial Hermann Hospital. Actually, this appointment was across the street in the UT building.

We walked my parents to an area on the 2nd floor where they could watch the train and people walking on Fannin Street. They would wait for us there in case the doctor's office was packed like the last time we were there. Then the nurse, Josh and I went up to see the doctor. Surprisingly, the waiting room was nearly empty. And they got us in to a room fast. They didn't even weigh or measure Josh, which we are used to happening pretty much every time we see any doctor.

After a pretty long wait in the room, we saw an intern, who asked us some questions but had no answers except, "oh, I'm just the intern." Good. And, "Dr. Cox will be in in a minute." Okay. Dr. Cox, looked at Josh for a couple of minutes, and upon hearing how well Josh was doing, decided as far as he was concerned, we could begin using the pacers as soon as possible. I told him I'd brought the box with the parts we needed for the outside of Josh's body. But, he did not want us to start using them right there. He says we need to have our regular pulmonologist oversee us with them. But that doctor has never had a patient with those breathing pacemakers. So, Dr. Cox said he'd call the pulmonologist and talk to him and hook him up with the reps from the company that makes the pacers, so he could learn what he needs to do to get us started.

Our next appointment with the pulmonologist is July 21st, so unless we hear from him before that, I'm guessing we'll figure out when we get to start pacing instead of being hooked to the ventilator then. Dr. Cox had said most patients usually begin by using the pacers an hour or so at a time, because they can tire out the diaphragm that hasn't been worked out so much with the ventilator going. But we reminded him that Joshua (at least before the surgery) had gone sometimes hours without his ventilator and breathed on his own, so he had given his diaphragm a good workout already. So, he may be able to tolerate using the pacers much longer.

Anyway, we had hoped to see my cousin that lives fairly near the hospital while we were in town, but he was going to be busy for awhile, and we needed to get Josh's nurse back ASAP, since her shift would be over by the time we got home. So, we started our 3 hour trek back to the San Antonio area. My parents got to see an area they'd never been to before (around the hospital in Houston) but they didn't really get to do much more than just walk around. But they wanted to come with us, and we did get to visit some in the van on the trip. But I think we were all exhausted by the time we got home.

When we got home, James was at work, planning to leave for Odessa to visit his dad (who is still battling terminal cancer - but doing well enough to drive a little and go to eat with James a few times while he was there). And Steffany was already gone with her boyfriend to the coast for the long holiday weekend.

Steffany called me less than an hour after I got home to tell me "I got my ring!" Then, clarified (at the direction of her new fiance) that he proposed. I (jokingly) asked her if she gave him the right answer and she said "duh." She went on to describe that they had gone directly to the beach upon arriving at the coast, had found a bystander to witness the proposal. She says the witness "screamed" when she heard him propose and came running over asking to see the ring. I told her I was happy for her. That was the last I heard from her all weekend.

We thought Steffany would be home Sunday night around the time James got back. I texted her to ask her when she'd be home, and she said oh, they were leaving on Monday... not sure what time. So, we waited today to see when she'd be back, so I could see the ring and all, but no word. Finally tonight just before 9, I got a text from her fiance saying he just got off work and needed her to stay there and help him clean and move some stuff at his apartment and he'd have her home tomorrow about 5. But I reminded them Steffany had made an ob appointment for tomorrow, what about that? First, he asked me what time, but then asked Steffany and told me he would meet me at the doctors office for the appointment. I never did hear from Steffany herself. So, I still have not seen a ring :( except for in a cell phone picture she sent yesterday. I'm a little disappointed, but what can I do, really?

Well, I'll back up a bit to the 4th of July. Josh and I had thought about going to the parade in Schertz, but I was not up and ready in time. We were still eating breakfast when we would have had to be there. Plus, it was hot and I had no nurse during that time to help me load and unload his ventilator. So, instead, we hung out at the house a while, and I gave one of our dogs a haircut.

Then, we went to my sister's apartment, where my parents were at. And my mom made homemade pizza for us all. It was super yummy. Then, we all sat under the a/c and watched some show about all sorts of breeds of dogs.

We thought about going swimming but put it off most of the afternoon, realizing it was SO HOT outside (like 105). We finally got up the courage to walk over to the pool. We figured there'd be lots of people in and around it, but there was almost nobody there. So, we got in and the water was NICE! Shortly after getting in, my mom realized she'd forgotten to take off her watch - but it seemed to still be working okay - even though she did not see any mention on it of it being water resistant. Phew! I mentioned that I didn't wear a watch and just depended on my cell phone to tell time. That was the moment when Joshua realized he did too.. and his was STILL IN HIS POCKET... the pocket of his swim trunks. And he was IN THE POOL!!!! You guessed it.. phone ruined in salt water pool. Great! He was very bummed out, but we decided to let his phone dry out and see what happened in a day or two. And we went back to enjoying ourselves splashing around in the pool.

After getting dressed and ready for dinner and fireworks, we got an invite to one of Josh's nurse's house for Bar-B-Q. They had made way too much and would love to feed us if we wanted. We decided it was a great idea and headed over. The food was great and the company delightful. Soon, it was time to go to New Braunfels to watch fireworks. We drove around a while and finally found a place at Schlitterbahn where we could see the display but not be stuck in a crowd of cars. The fireworks were beautiful and we had a great time. But it was still over 100 degrees out - even that late at night. And we were exhausted by then. So, we headed for home. It was a very nice way to spend the 4th.

I hope you all had a great holiday weekend!

Oh, we got rain today (Monday evening)!!!! Thank the Lord!!!!

Wednesday, July 1, 2009

First Sonogram

Here are pictures from Steffany's Sonogram

soon to be father and mother

Steff just before the sonogram began
(they wouldn't let me take pictures during the actual sonogram)

the baby, according to measurements, should be 11 weeks and 2 days old

we do not yet know the sex :(

Discovery Documentary - Life or Death : Battling to Breathe