Welcome to Holland

Welcome to Holland

Written by:  Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland. 

I have sat down several times over the past month to try to write this update.  It has been very difficult to the find the words to say.  A friend reminded me of this poem, and it was a great reminder for me, especially now.  You are all probably wondering what does Holland have to do with Daylon.  

On April 26th, we saw the developmental pediatrician and received a preliminary diagnosis of autism for Daylon.  She was certain that he was autistic and wanted us to take him through Full Circle for confirmation of the diagnosis.  I felt a mixture of emotions.  Part of me could see it and agreed with her, the other part of me felt there was no way, not my little man!!  We called to set up the appointment for Full Circle, and fill out all of the paperwork needed for that.  We were told that they were sure that we could not get in to the May clinic and it would most likely be July before we were able to get in.  On May 25th, I got the call that they had  a cancellation and could we come in on the 29th at 8:00 am.  We went in and met with four specialists and spent from 8:00 to about 11:30 playing.  I met with the specialists again at 12:30, with a pretty good idea of what I was going to hear.  We walked away from that appointment with a confirmed diagnosis of Autism and a possible ADHD diagnosis as well.  We have spent the last month digesting it and working on getting him the services he needs.  He will continue his speech therapy and occupational therapy services and we have him in an eight week Social Group now too.  We have applied for a scholarship for The PLAY Project and also applied for Autism Waiver.  These programs require a time commitment of 20 hours a week, but the results that they are getting from both programs is phenomenal.  We are praying that we get in with one or both of them.   We have always been in Holland to an extent with Daylon.  His needs were never what we expected or the same as what the girls' needs are, but we have tried to make it a point to try to enjoy the scenery here in our world.  This does not mean that there is anything wrong with him, he will be okay.  He just processes things differently than the rest of us do, so now we have to learn his language and how best to communicate with him.  

Hearing Test & Surgery Update

Daylon had his hearing test a week ago Wednesday and surgery a week ago Thursday.

Hearing test went well, or should we say as expected. He passed in the right ear and left ear was refer, again.

Surgery went really well. They switched the tubes in both ears, and did the adenoid removal. Doctor said there was very little tissue there, so he feels that was not the problem and it isn't really going to make a difference. I guess at least they were able to get tissue to send to genetics so they can see what kind of genetic make up that tissue has.

Recovery has been a little rough for him. He ended up with a lot of pain, which the doctor was not planning on him having. I am sure that the CPAP was not helping at all with the pain part, but he had to use it because his apnea is so bad. We got pain meds for him and that helped him a lot. He has not been eating well and is back down to 32 pounds. Not great when you consider that the end of December, he weighed 35 pounds. He has a sinus infection and a very stiff neck. He is on antibiotics for the infection. As far as the stiff neck goes, I am told that can be a side effect from the surgery and we are giving him ibuprofen 3 times a day. If it hasn't loosened up by Monday, we will go back in to have him checked again.

UPDATE:

Daylon ended up going through six weeks of PT to loosen his neck muscles up after the surgery.  We had another Hearing test on February 8th, which Daylon passed, but the audiologist could not see the tube in his left ear and the ear was also acting like an ear without a tube.  So, we had to go back to Doctor to see what was going on with that.  It turns out that when the ear was healing the tube pulled back behind the ear drum and the ear drum healed over it.  Daylon had another surgery on March 1st to fix that.  

Endocrine Update

Daylon's endocrinology appointment went wonderful. He was 33.25 pounds and 37.25 inches. He grew 1 inch and gained 1.25 pounds. He is now consistently at the 3rd to 10th percentile and was below the first percentile before starting growth hormone a year and a half ago.

We talked about the use of growth hormone with his sleep apnea and there is not a lot of research out there as far as what those risks impose. We do know that there have been 4 or 5 deaths reported, but those children had very low muscle tone, were obese, and had Prader-Willi Syndrome. Daylon has none of those things so the doctor does not feel he is at risk.

That being said he does feel that it is reasonable to stop his growth hormone to see how he grows without it. We are to use up our current supply, which is about a month's worth, and then stop. His height growth will be reassessed in six months to see how he is doing.

C-PAP

On December 14th, we were able to take Daylon over to the Sleep Center in the afternoon to see if we could get him fit for a mask and take a nap.

We got him set up with a mask, and he fell asleep for an hour with it on. During that hour, they adjusted the airflow to where they needed it to be to keep his airway open. They found that he needed it at 9. So, once we had that figured out we were able to pick up our CPAP machine the morning of the 15th.

He has done really well with it. At one point, we had him on a mask that looked very similar to a fireman's mask. He loved the thought of it, but had trouble keeping it on because it was so bulky.

I talked to his respiratory therapist today. They had looked over his downloads from the last two weeks, and found that he was still having events with the flow set at 9, so they wanted to set his machine to auto. We went ahead and set it up on auto this afternoon, with it set on auto it will start at 9 and automatically adjust to where he needs it. I have been watching it this evening to see where it is and it has been ranging anywhere from 9 to 14.2. This just amazes me considering I know adults who are on 12.

December 14th Appointment with ENT

We had our appointment with ENT and discussed the surgery to have new tubes placed and also to have his airway evaluated. That surgery is scheduled for January 12th. We will not have a time, until the day before when I call. YAY!!!

Sleep Study Results

All I can say is WOW!! and I am soo glad I followed my "Mommy Instincts" on this.

In 452 minutes of sleep 304 episodes of apnea were scored, 288 were central (meaning there was no effort), 7 were obstructive. Another 158 episodes of obstructive hypopnea were identified. Hypopnea is when there is a 30-90% reduction in airflow. The overall AHI (apnea-hypopnea index) was 52. AHI is used to determine the severity of sleep apnea 5-15 is mild, 15-30 is moderate, and above 30 is severe.

Daylon's oxygen saturation dropped significantly as low as 55% at one point. His oxygen level was below 90% for 20% of the study.

Diagnosis:

Obstructive Sleep Apnea, Central Sleep Apnea, and Hypoxemia

Plan:

Have airway reassessed by ENT, and CPAP would also be a possibility.

We are not able to see ENT until December 14th, but saw Dr. T today. He does not feel that ENT is going to find anything that they can fix, so he wants to get Daylon on a CPAP if at all possible. We tried a little bit today, but he wasn't having it, so we will do an overnight CPAP titration study on January 4th.

Sleep apnea definition: http://www.mayoclinic.com/health/sleep-apnea/DS00148/METHOD=print

Hypoxemia: http://www.mayoclinic.com/health/hypoxemia/MY00219

November 10th - Sleep Study

We went in for our sleep study last night. It took about 30 minutes or so to get him all hooked up to the machines. Within half an hour he was asleep and five minutes later he was snoring.

When our techinician came in this morning I made a comment that he would do his thing as soon as we took all of the wires off, she asked me if he does that every night, and when I said yes, she said he did it last night too. She also made the comment that if they weren't taking me seriously before that they would be now. She, of course, could not tell me a whole lot, but now I am more nervous than ever to get those results.