Medical Update - 2/17/9 - Part 2 & 3

So we had arrived at the hospital at 8am. We had been to the club foot clinic, ultrasound and X-ray (and the cafeteria). We were now seated in the waiting room of the Spinal Defects Clinic (SDC).

When the mother in radiology had to cut her story short, Holly had told me that she wished she could have talked with her more to hear her story. As luck would have it, the mother walked into the SDC waiting room with her 20 year old son in his wheelchair (wc) and sat down.

Shortly after that, the three teenagers we had seen before all wheeled in as well - all having had their images done in radiology before the SDC just like Annabelle . . . .

Holly looked at me and said, "Let's go sit by them . . ." and we did.

The mother picked up the story where she had left off and explained that her son had gone most of his 20 years without a shunt revision but just recently had a shunt inserted in the other side of his head so that he now had one on each side (something I had never heard of).

We chatted with the teen sporting the Life Rolls On sticker. He proudly explained that he was an "Ambassador" for Life Rolls On which meant that he travelled around speaking at local schools to spread awareness of what life with a disability was like and to let people know how they can support the foundation. He said that he loves surfing and that he had just been awarded a sponsorship to travel to Costa Rica to participate in the filming of a surf documentary.

He also pointed out that surfing wasn't the only sport he loved - he also played rugby, soccer and basketball.

He is 14 years old . . .

I checked out the LRO website and found his story. There are other stories there as well so if you are looking for some perspective in life, I would suggest you spend a few minutes there . . . . SERIOUSLY READ A COUPLE OF THE STORIES THERE.

We talked with the boyfriend / girlfriend duo and they both said they were in sports too - he used to play rugby until he hurt his shoulder and now he just plays basketball. She plays soccer, basketball and "beating up on him" as she thumbed to her boyfriend . . . "but that's on a professional level -the other sports are just amature . . ."

It was an amazing experience to sit with a couple of mothers and 4 wc-bound teens and hear all about their activities and things going on in their lives.

Patrick's mother told a story of how shortly after starting kindergarten, Patrick had become lazy about pushing himself around in his wheelchair. She didn't understand what was going on until they attended a classmate's birthday party. There was a ruckus and the birthday girl, with tears in her eyes was crying, "IT'S MY BIRTHDAY! I GET TO PUSH HIM!!!!!!" Patrick beamed as his mother told the story . . .

The moms tipped us off to the San Diego Adaptive Sports Foundation - which is pretty self explanatory. If you go to their website you can see video of wc sports in action.

Slowly but surely we were each called into the clinic. Holly, Annie and I were placed in our exam room around 1pm and the medical marathon began.

Orthopedics:
The doc came in, asked us a few questions, talked with us about the x-rays we had taken that morning and pronounced everything right on track. At this point in Annie's situation, the club foot clinic is the driving force in the ortho department and there isn't much else to be done. The doc said she would like to see us back in 6 months.

Neurology:
The doc came in and we talked about Annabelle's shunt revision. He wants her to come in for a CT scan and shunt-series xray in the near future to make sure that the shunt is working properly. This will also give us the added bonus of seeing if the 3V procedure is working as well. Aside from that, he said he would see us back in 12 months.

Physical / Occupational Therapy:
Since our PT / OT needs are being met through the Early Start program, these folks came in just to check up on us. They encouraged us to do some more tummy time, side line laying and supported sitting. They also recommended one of these as the pad is a little bit thinner than some other tummy time gear and therefore easier for infants to use.

Nursing:
Nurses are great. The general dynamic seems to be that doctors have all the knowledge and nurses have all the heart. The head nurse came in, reviewed a few things with us, asked how everything was going and got us some free samples of ointment to try on Annie's diaper rash.

Urology:
The ultrasound we had earlier in the day was to examine Annabelle's urinary tract. It appears that she is not completely emptying her bladder but that it is not a problem at this point. The Urologist did recommended a urodynamic study be done to determine exactly what Annie's abilities are in this area. I explained that we were going to be having foot surgery in April and asked if this was something that could wait until she was out of casts. The Urologist said, "Yes" and scheduled it for August.

Physiatrist:
This is a therapist who comes in and tries to look at all the various disciplines and blend them into one holistic approach for the patient. She wanted to review everything that everyone had said and make sure we were doing all right.

SDC Director:
He came in to check on us and encourage us to attend the Spina Bifida Association Meeting in March.

Now, if this post seems long, imagine what the day was like. It was 6pm before we left - having seen 12 doctors (if you count the x-rays and ultrasound) over the course of 10 hours. Annie wasn't able to sleep well throughout the day and although she was her happy squealing self up until 4pm, those last two hours were spent alternating between hunger and exhaustion.

I started to get punchy around 4:30 or so and brought up the time that the Pediatrician (who we love) let Holly and Annabelle leave a checkup without actually giving Annie her shots. The wife had to go back with the wee-one the next week to get them . . .

"When you are a Pediatrician, shots are what YOU DO . . ." I exclaimed in hour 9 of our ten hour day this past Tuesday. "Shots are the main reason you are there . . . kids come in and you sho . . . . give them their shots!"

The wife burst out laughing . . . "You were going to say 'shoot them' weren't you? Kids come in and you 'shoot them'?" . . . . and we both had a good laugh . . .

So that is it.

Summary:
Everything seems to be moving right along. The next big hurdle is of course the foot surgery in April but it is beginning to feel as if the medical marathon that began last August might be winding down by the end of June . . . and by "winding down" I mean we might get the chance to stop sprinting around the end of June and slow down to a medical jog or a walk . . .

So here is our Medical Schedule for the foreseeable future:

2/23 - Physical Therapy
3/9 - Pediatrician Checkup ("shoot 'em!")
3/14 - SBA Meeting
4/7 - Club Foot Clinic
4/14 - Foot Surgery
August - Spinal Defects Clinic

We are also doing infant therapy every two weeks and no doubt the calendar will fill with surgery follow up appointments after foot surgery. But still . . . we are down to 9 medical appointments in the next 8 weeks - which seems like a vacation of sorts.

Thank you for all your prayers, encouragement and support. Your comments and e-mails mean so much to us.

I will have a prayer request update up in the next couple of days as this post is plenty long enough!

Thank you, Thank you, Thank you.

Blessings,

Matt