Our Annual Pilgrimage to the Children’s Hospital in the City

Our Annual Pilgrimage to the Children’s Hospital in the City

Here we are again. With warm, fuzzy nostalgic feelings as we settle into our room at the Ronald McDonald House. We have this down to a science now. Spending the night before at the RMH, that way we can actually arrive on time to our appointments. Usually we drive to the city in the afternoon, But this time we drove in the morning. The kids always fall asleep as we are arriving in the city, and if they nap at 5pm, then it’s a pain to get them to go to bed. A 30 minute nap at 2pm, is harmless. Especially when followed by a 1 mile walk to go play in the splash pad.

This is our 11th trip to the children’s hospital in the city. We have made this long drive a lot in the past 3 years. It has been 11 months since our last visit, so I am actually feeling a bit rusty. We now just do an annual pilgrimage to the hospital. Although the doctors would love for us to come every 6 months. But we said “no” to the Christmas-time trip over the mountain pass.

Our daughter had cleft palate surgery a year and half ago, so, why do we keep going back? It’s basically a well-child-checkup overkill, so the doctors can make sure everything is going well and up-date their records.

First we meet with the nurse. She weighs PipSqueak, listens to her lungs, and asks what foods she likes to eat. Basically, it’s the same well-child-checkup you do every year with your child.

Then we have a 1 hour appointment with Audiology. A hearing test to make sure PipSqueak can hear well with her hearing aids, and make any necessary adjustments.

Then we have a 1 hour appointment with Speech Therapy. Never mind that we see ST locally, every week. But our local ST likes to hear what the hospital ST has to say, since she sees our daughter less frequently. I think the purpose is to evaluate PipSqueak’s development and give us advice such as, “focus on enunciating ‘b’ and ‘p’ word endings.”

After all that, we are tired and hungry, so we take a lunch break. On previous trips, I would schedule a long enough break to give PipSqueak a nap, but now she’s too cool to nap. So we will just eat lunch at our favorite restaurant by the hospital and maybe play in a nearby splash pad. Or stay dry and just watch other kids play.

Then back up to the hospital. We see the Ear-Nose-Throat Dr (ENT) for a grand total of 10 minutes. He pretty much walks into the room to pry open PipSqueak’s mouth and say, “looks good.” I do not like this guy. His bedside manner is terrible. I don’t understand how or why he ended up as a doctor for kids! He also tries to convince us to put tubes in PipSqueak’s ears. Apparently kids who have cleft palate, have lots of ear infections. I keep reminding him, our daughter has never had an ear infection. “But that’s impossible!” Sorry, not sorry. That’s the truth. If you don’t like it, take it up with our chiropractor. 

Then we see the surgeon. He will probably check on the cleft palate repair, to make sure it looks good. He cannot do the hearing aid implants until PipSqueak is 6-8 years old. So I am not sure why we need to see him. Although he will probably talk about optional cosmetic surgeries to “minimize the facial differences so PipSqueak does not get teased in school.” Apparently having cheek bones is the antidote to getting teased? I will remind him that we homeschool and her one classmate (her sister) will no doubt continue to tease regardless of “facial differences.”

That is the usual line up for our visits to the children’s hospital. Except for the times we came for pre-op, and surgery, or the time my daughter was born and stayed in the NICU. 

But this trip, we have a bonus appointment with the Sleep experts. That will take place a totally different building from the Children’s Hospital, so it’ll be a fun adventure navigating the maze of hospital buildings to find the right floor of the correct building. Once there, we will have a 1 hour consultation to talk about the possible reasons our toddler still does not sleep through the night, at almost 3 years old.

After that, we will be done at the main hospital campus, and have a break to eat dinner. Then PipSqueak and I will check in to the Sleep Lab for the night. They will put a bunch of stickers and wires on PipSqueak and then somehow she (and I) will sleep.

It will be interesting to see the results. Best case scenario: we blame itchy eczema for sleep deprivation. Worst case scenario would be: sleep apnea caused by breathing difficulties. The potential solution would be jaw surgery to open up her airway and give her more room in her mouth for things like her tongue. Not cool, so I am hoping for best-case scenario. When in doubt, blame eczema?

Becky TheBahaMama

Becky TheBahaMama

I spend my time making Custom Softbands and Accessories for Ponto, AdHear and Baha hearing devices. I am also a published author. I wanted our daughter to see herself represented in a story - a little girl who has facial differences and wears BAHA hearing aids. The book grew to include some of our friends who are all so wonderfully different. My first book, “Wonderfully Different, Wonderfully Me” features a diverse group of children and celebrates each child’s unique strengths. All children can see themselves in at least one of the characters, whether they look similar, or have the same interests or personality. "Wonderfully Different, Wonderfully Me" is the children's book that belongs in every household and classroom, to promote inclusion, acceptance, and friendship. Order your copt at: wonderfullymebooks.com

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