Spinal Defects Clinic

For the past couple of months I have been on a mission to seek out every possible program / benefit that might be of help to Annabelle. One of the first programs I heard about was the Spinal Defects Clinic at Children's Hospital.

We had our first trip to the clinic this past Tuesday.

I don't know about you, but "Clinic" is not a word I have good feelings about. When I hear "clinic", I think of those hospital TV dramas where the doctors volunteer their time in a clinic that services the poor, underprivileged and uninsured. Nothing is "quite right" at a clinic. They are always a little more disorganized, a little dirtier and much much louder. Of course, that is not the reality at all.

Because children with spinal defects often have to see multiple doctors in multiple disciplines (Annabelle is seeing separate doctors for: Pediatrics, Physical Therapy, Occupational Therapy, Infant Therapy, Plastic Surgery, Orthopedic Surgery, Regular Orthopedics, Urology, Neurology, and tomorrow we will be adding one more for Club Foot Orthopedics) many families find the numerous appointments straining (no kidding).

At the clinic, they take you to an exam room AND ALL THE DOCTORS COME TO YOU.

We arrived at Children's Hospital at noon and were ushered in to our exam room around 1pm. The first person to come in was the nurse in charge of the clinic. She had our chart in her hand and it had a row of colored sticky tabs along the top. She explained that we would be coming to the clinic about once every three months and that before we arrived, the head nurse would review our chart and attach all the appropriate sticky tabs to it. Each tab stands for a different discipline: Red for Neurology, Green for Orthopedics, Yellow for . . . you guessed it, Urology . . . and so on.

Once we are situated in our exam room, our chart is placed on the counter at the nurses station and the various doctors come by looking for charts with their colored tab on it. Once the Urologist has seen you, he will remove his yellow sticky tab from the file and place it back out on the counter for the next doctor. When you are all out of sticky tabs - you get to go home! Being a sort of organizational nut-job, I was very impressed.

After the nurse finished with us, she removed her blue tab and put our chart out on the counter.

The first Dr we saw was the neuro-surgeon who handled Annabelle's surgeries. He gave her the once over, exclaimed that he was very pleased with her progress and said he wanted to schedule us for a CT Scan and series of Xrays to make sure her VP shunt is working properly. He removed his red tab, and put our chart back out on the counter.

Moments later, the social worker came in. She wanted to make sure we were getting all the help we needed and wanted to know how we were coping with the stress. She offered to hunt down answers to some Medical and SSI questions we had.

Next was the hospital's PT/OT therapists. They gave Annie-Lu the once over and peppered us with questions about her activity level etc. They ohh'ed and aww'ed over Bellie who entertained them both with her version of a delightful conversation. They pronounced Annabelle as right on track developmentally and they gave us their seal of approval as "good parents". Nice.

Next was Urology. The SD Clinic Urologist is actually the director of the clinic and he was very pleasant. He checked Annie-Lu out, asked us some questions and gave us a brief run-down of what to expect from a urology perspective over the next 5 years. It basically amounted to, "Things seem to be going just fine for now and we will deal with any issues as they arise . . .". Which is a complete 180 from the Dr. Mengele who wanted us to catheterize Annie every 3 hours for the next 4 years as "practice". The Urologist wants to do an ultrasound to check on Bella's kidneys, bladder etc. He gave us his card and encouraged us to contact him if we had any concerns regarding the clinic.

Last was Orthopedics. They asked about Annie's progress with her back and when we said she was all healed, they scheduled us to have Annabelle casted (we are actually going in today for the first series).

The way the casting works, the Doc bends Annabelle's feet slightly and then wraps a cast around the ankle and leg to hold the foot in that position. Then we go back once a week, have the casts removed, the feet bent a bit more and then a new cast is put on. It apparently is a weekly ritual that will last about 9 weeks or so depending on the progress. The goal is to stretch the tendons and ligaments in the ankle to get it straightened out into the correct position.

The Ortho doc also mentioned that Annabelle's hips are most likely dislocated but that there was no reason to correct that right now. Which seems pretty strange if you ask me.

By the time we saw the Ortho doc we had received so much info that I didn't really have it in me to press the doc further on the hip issue. She seemed to be very confident and she is very well regarded so I am sure she is right. It's just that I want to know why she is right. So I will be boneing up (pun intended) on that one in the coming weeks.

Afterwards, the nurse came back in to check on us and pronounced us "out of stickers" and we were free to go. All in all, we were there for 4 hours.

So that is the latest.

Neurology - everything is going well - we are scheduled to have a CT scan and xrays

Social Work - we seem to be in the process of accessing every possible program and benefit available

PT/OT - we are developmentally right on track

Urology - Everything is fine so far

Orthopedics - we start the casting process this morning

Plastic Surgery - (who does not participate in the SD clinic) - we have one follow-up appointment later this month and then I think we are all done

The clinic makes for a long day but you just have to come armed with a diaper bag packed with supplies and something to read. All in all, it was a very good experience and we saw all the doctors we have been seeing up to this point in one shot instead of driving up to the hospital twice a week.

In non-clinic-related news, Annabelle has developed a Umbilical Hernia. Sounds serious, doesn't it? It's not.

There is a ring of muscle just behind your belly-button that encircles the umbilical cord. At birth, that ring of muscle contracts, closing off the hole. In some babies (especially pre-mies - Annabelle was 3 weeks early) that ring of muscle does not fully contract - allowing fluid to build up in the belly-button. So now it looks like Annabelle has a marble-sized, fluid-filled balloon for a belly-button.

I did some reading on it and the pediatrician took a look at it last week and said not to worry. The only way to correct it is through surgery but they don't do that type of proceedure until 5 years of age and by that time, it almost always corrects itself. The Doc said he thought Annabelle's would self-correct in the next three months or so.

So that's the latest medical update.

We have some prayer requests and an update on how mom, dad and baby are handling it all but I think this post is long enough for now (ala the long clinic appointment).

Thank you once again for all your prayers and support. I don't know how we would be making it without you all!