wolfhirschhorn.org

After we got home with Rheyn, our next few months were filled to the brim with appointments. The day after he was discharged from the hospital we had an appointment with his pediatrician – an awesome woman who looked over Rheyn during her rounds at the hospital and who made a place for us in her caseload even though it was full.  She updated us on what the children’s hospital had found so far in Rheyn’s genetics, which wasn’t much. They thought something was up with his 15th chromosome but had no hard evidence just yet. A few days later, we met with the plastic surgeon who would be repairing Rheyn’s cleft-palate and decided that he would have that surgery anywhere from 7-10 months old, depending on his weight and health.

A week before Rheyn turned two months old, he smiled for the first non-gas-induced time at Daniel and a couple weeks after that he started to use his hands to bat at hanging toys and began making new baby babble sounds. Shortly after, we noticed that he might have a hernia. It turned out that he did so in April, at four months old he had a very quick, outpatient repair surgery.

Waiting to go in for his hernia repair

Our happy, wide-eyed boy after surgery!

We continued to have pediatrician check-up appointments once a month (at least) and in September, right after little man turned nine months old he had his cleft-palate repair and ear tube placement surgery. We spent the night in the hospital afterward and Rheyn did fantastic! He never needed anything more than Tylenol for his pain and even though he had to wear arm splints to keep him from tearing out his stitches for nearly two weeks he stayed in a pretty good mood….not that we made him wear the arm splints all the time like we were supposed to. We normally just watched him really closely (nothing new) and let him play sans splints since his baby arms weren’t chubby enough to really hold them on anyway and his lack of excitement for wearing them killed us a little. So he mainly wore them while sleeping. After the two weeks were up and we got the all-clear to use bottles and spoons again, we started Rheyn on sippie cups minus valves. Goodbye Haberman Feeders! Dan and I figured that we might as well transition him to sippies rather than regular bottles since a change had to happen anyway and it worked wonderfully. Rheyn loved to drink like a big boy and he gobbled up all kinds of baby foods now that his bites didn’t squish up into his nose anymore. Even though the surgery was nerve-wracking it was so worth it to see our baby able and [incredibly!] willing to eat!

Resting before his ear tube and cleft-palate surgery

Right out of surgery he was pretty out of it, very hungry, and had a brand new cry!

The day after, ready to go home!

We still hadn’t heard much from Children’s about the genetic testing throughout the few months after Rheyn was born. Since their first suggestion of an abnormal 15th chromosome they determined that wasn’t the case but didn’t have much else to tell us. Then during the first week of October I got a call from the genetics department telling me that they finally had some answers and would like for us to come in so that we could talk in person. So on October 16th, 2008 when Rheyn was 10 months old, we made the three hour drive to Children’s and met with the geneticist and two other doctors on his team that had been studying Rheyn’s case. First they told Dan and me that they thought Rheyn had Angelman Syndrome or Prader Willi Syndrome but his constant, strong movement in the womb and his far-less-than lethargic lifestyle even after birth didn’t match up with either of those. They told us that once they dug deeper with micro-something-or-other they finally found that Rheyn had a deletion of part of the ‘P’ arm on his fourth chromosome. In other words, Wolf-Hirschhorn Syndrome.

Finally! Something specific and true – no more testing.

The doctors told us that there could be mid-line deformities and gave us appointment dates for an ultrasound and EKG. We were told about all of the symptoms and obstacles that may or may not come along with the syndrome and heard, “He’ll do everything a normal child can, just at his own pace.” quite a few times. We even got some printed info straight from good ol’ Google! If Dan and I hadn’t researched everything under the sun and already read those same medical journal snippets, they might have done us a bit more good but nonetheless, we appreciated the gesture. It wasn’t their fault that no one really knew anything about the syndrome. Plus in a sense, we figured it was better that way. It only meant that Rheyn had plenty of opportunity to live and succeed. We already knew our child would be quite the unique character with Dan and me as parents so this diagnosis seemed to fit, in a weird way. And you know what we did after that appointment? Went to one of our favorite places – The Purple Cow – ate a yummy dinner, took pictures with our Rheyn by the restaurant sign, and smiled.

I know the what-ifs are scary. Especially when there’s a syndrome that involves high mortality rates in young kids and heart problems tacked on. And believe me, I’ve done my fair share of crying, worrying, and wondering. I don’t know why the stork thought I’d be good at raising a child with a disability. I’ve never had a long rope of patience or done really great things to help others or make much of a difference in the world but even so, the baby train conductor obviously thought I had the ability to give all of the extra love, acceptance, and care to a baby that needed it. Or even if Conductor Man didn’t think that, having a sweet baby that needed/needs those things sure made me strive to have more patience, more acceptance toward all kinds of people, and a better attitude. So either way, Rheyn has made me a better person and helped me realize that I can do all kinds of things I never thought I could. Pretty cool, huh?