The Deaf shall hear… 28 Days of Cayden, Day 9

Cayden was deaf. Not hard of hearing. Not hearing impaired. Profoundly deaf. He failed the newborn screening. He failed the follow-up ABR. He failed the follow-up sedated ABR. He failed our home-grown really foolproof  ‘Let’s bang pots & pans very loudly behind him and see if he flinches,’ test.  No doubt about it. He couldn’t hear a thing.

We were referred to UNC-Chapel Hill’s department of otolaryngology (ear/nose/throat) and audiology to have the most in-depth, most sophisticated test by the best trained specialists. Still not a sound was registering.

side view hearing aid

Cayden’s flat head didn’t help with keeping the hearing aids on, and only added to the feedback he was getting.

Bi-lateral hearing aids were prescribed, to see if that would work. Three hour one-way trips to Chapel Hill were taken monthly, to get re-tested and get new molds made, to fit his growing ears. Every time a child’s ear grows a little, the ear molds need to be re-made because if not, a piercing whistling occurs from the feedback of the highly cranked volume they are putting out.

Cayden’s low-set small ears and floppy head made keeping the hearing aids on and in a constant battle. If they came out a tiny bit, feedback, if they came out a lot…more feedback. If we lost them… tons of money down the drain! Those suckers are expensive!

Even with the ongoing fight against keeping them in, we really dedicated ourselves to giving the hearing aids a good shot. But actually, we had very little hope that they would work. Early on  it was determined that he probably had sensorineural hearing loss caused by a malformation in the inner ear. This type of hearing loss is rarely able to be ‘fixed’ by standard amplifying hearing aids. A cochlear implant is usually necessary to get some sort of hearing. However, because of his brain malformations, the audiology team (a wonderful group of people at CCCDP in Durham) didn’t have a lot of hope that his brain would be able to interpret sound, even if we could bypass the malformed cochlea.

Waiting room CI

Early morning in the Cochlear Implant surgery waiting room. Skylar was not even 2 weeks old, Cayden was not quite 2.

We researched and did our best to show that we were parents who were dedicated to giving him the best attempt at hearing. This 18 month process was a trial of sorts, determining if we would be dedicated enough to go through the cochlear implant process, which was a more complicated, more time consuming process than that required for the hearing aids. We joined a local support group for parent of children who are deaf and hard of hearing (HITCH-UP) that was amazing for us, and all the parents there had such good advice. Many of the parents in the group strongly recommended cochlear implants for profoundly deaf children like Cayden. Their children’s progress was definite and do-able, we thought, and worth fighting for. In our opinion, Cayden didn’t have a lot of plusses on his side. Not hearing was a large disability on top of the vision issues and the physical mobility issues. Trying to eliminate one of these negatives was our main goal (remember during this time, he was still considered legally blind, so we were trying to get at least one part of the deaf/blind taken away.)

So after going through nearly 2 years of hearing aids, monthly drives across the state, and a bunch of tests (including the sleep study, pulmonary study & endoscope to be sure he could handle the long implant surgery) we were finally approved to do the cochlear implant. Praise God! We were so excited!

But this, being our life couldn’t be easy. We were expecting Skylar at the time, and I had a wedding to be the maid of honor in only a few weeks after Skylar’s due date. So, I reasoned we’d already be in Chapel Hill for the wedding, we might as well save a trip and plan the cochlear implant surgery for the Monday after the wedding. Skylar was born the 16th (almost a week late), the wedding was the 25th and the implant surgery was the 27th. Talk about a busy month! Thankfully, the surgery only required a day or two recovery in the hospital, and then he could finish healing at home for a month.

CI scar

The scar from the implant. The implant surgeon had to place his coil in a different place because of his strangely shaped head.

Once healed, we went to the office for the turn-on. What an amazing day. Even though there was no big “wow!” moment, we could see him flinch, smile & could tell it had worked. Again, praises were heard that day!

Cochlear Implant Bodyworn

The Cochlear Implant with bodyworn processor & harness. Now the challenge was keeping both the implant coil (magnet) to his head & his microphone on his ear.

After the turn-on, we had a long series of visits, where they slowly turn up the volume and expand the frequencies the child hears. This slow process took almost a year. We went first weekly for a month, then bi-weekly, then monthly, then 3 months… in the course of the first year after a cochlear implant, you visit the office around 20 times. At a 3 hour drive each way… with a handicapped 2 year old and a newborn. I was a little crazy.

But it was worth it. By the time Cayden was 3, after all the work (and I didn’t even discuss the weekly intensive therapy visits from both a speech therapist and a teacher of the deaf), Cayden was tested and found to be on age level for comprehension and hearing. That is the miracle. Not only could our child hear, he could hear clearly, and he could clearly show us that he not only heard but understood. AT AGE LEVEL. This predicted ‘vegetable’, was age-appropriate, gaining 3 years of comprehension and hearing in one.

By this time, his vision had improved as well, and our many of our prayers really had been answered.  Our deaf/blind child had not only 1 but 2 of his major handicapping disabilities taken away. The deaf can hear. The blind can see. Prayers are answered and praises ring loudly to Heaven.

In that day the deaf will hear the words of the scroll,

and out of gloom and darkness the eyes of the blind will see.

Once more the humble will rejoice in the Lord:

the needy will rejoice in the Holy One of Israel. Isaiah 29:17

 

Shira 

Thanks for sticking with me this week! Next week, I’ll talk about communicating with Cayden and just HOW we learned that he was age-appropriate in his comprehension.

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The Blind shall see… 28 Days of Cayden, Day 8

vision screening cards

Vision screening tools for newborns

Have you ever seen an eye test done on a floppy 4 month old? It was amazing to watch. Special lenses, bright lights, crossword puzzle like panels where she watched how his eyes flickered to focus. Very interesting. Trying to determine just what Cayden could actually see took quite a while.  After all those tests, we had to wait for the dilation drops to work, (which took over an hour!) to check his optic nerves. He hated the bright light she used to check his eyes & optic nerves, and kept closing his eyes tightly. But the woman was a saint, with great patience and passion for her work.

After all that poking, prodding, and holding his eyelids open, I was given the diagnosis. Cortical Visual Impairment due to small optic nerve. Possibly blindness due to the brain malformation, and uncertainty of whether his brain could even process the images his eyes & small optic nerves sent it. Ptosis, causing smaller field of vision. At this point vision uncertain. At a subsequent visit, I was told that combining all these factors, he could be considered legally blind.

Legally blind. Wow. Legally blind doesn’t mean he couldn’t see at all. We could tell he could see some things, just how much was uncertain. Eyes continue to develop for a time after birth, but his didn’t seem to be keeping up to standard development.

This was a huge hit to our hearts. We already knew he was profoundly deaf, & most likely would not be able to walk. But blind too? What did that mean for his life? To be in a wheelchair, that was manageable. To be deaf, we could (& did) sign with him. But to not see too, that was Helen Keller territory PLUS. I was reeling. I just imagined him sitting in a corner, no stimulation, no input. Blind, deaf, mute, lame.

But the ophthalmologist had some hope for Cayden. She offered intensive vision therapy for him, which had been shown to bring improvement to children with CVI, perhaps not bringing normal vision, but possibly some improvement. The brain had to be taught how to process the images that did slowly come in, and challenge it with exercises to make it work harder.

C's swing

Cayden loved his light up swing. It was the perfect toy for him, encouraging his vision, reaching and it supported him so well. After a while he learned to pull the toys to make the lights & music work. Smart boy!

So we threw ourselves into that. I think we had every light-up, vibrating, music-making toy on the market. We had a therapist come frequently to work with him and me, teaching us exercises meant to stimulate his vision. We worked on following an object across center line (there was that pesky center line issue again, and that processing glitch due to the P-ACC). We worked on reaching out to grab an object he saw (doubly challenging since his arms didn’t want to work well). We worked on turning his head to follow an object, and not turning his head to follow an object. We worked on perspective, near and far, up and down.

Did you know there was so much to seeing? This is stuff that comes naturally to a typically developing child. But for Cayden, it had to be taught, it was work, it was HARD! But he did it. He was a hard worker. He was progressing.

Mom & me 7 mos.

Before the surgery, you can really see how differently his eyes could naturally open.

When C was 7 months old, he had ptosis surgery to correct his droopy eyelid. This was an interesting procedure. They take a small rubber-band like piece and insert it into his eyelid in a sort of a loop. This basically ‘springs’ his eyelid into the open position, allowing for a larger field of vision. However, the downside was that he then had to learn to physically close his eyelid by working against the rubber band at every blink, and at sleep. For quite a while, we had to be dedicated to put a lubricating gel into his eye several times a day, to keep his eye from drying out and being injured from always being partly open. But it was really worth it for him. His vision did improve… two eyes are better than one! God know what he is doing!

 

Ptosis surgery

Immediately post-surgery, the 3 incisions where they inserted the band can be seen. He still had to learn to use that eye properly.

The other downfall to this surgery was Cayden’s photophobia (super-sensitivity to light) was even worse. He couldn’t fully close his eyes against the sun or other bright light, and he would scream and cry if the sun got in his eyes. I can still easily picture him grimacing, wriggling, and crying, trying to get in a position in his carseat to get out of the sun!

So we invested in special shades for the carseat, strollers and wheelchair; he always wore hats or sunglasses. We played outside at dusk, rather than mid-day. We adapted. He thrived.

After several years of hard work on the vision, during which his main communication input was visual (remember he was profoundly deaf), his vision did improve. He could see his books, he could look at an object within several feet up to across the room. He could track up, down, left, right. He could reach out and try to get something he wanted.

c swimming

Cayden floating in his cool shades.

When he was right around 2, we visited the ophthalmologist again. Same tests. Same doctor. But this time she said his vision was age appropriate! He was off the legally blind list for now. He did not need glasses, but we would continue to follow his progress to see if they might be necessary. Praise God! The blind child could see.

I firmly believe that if Cayden had been able to hear, he would not have been able to see. His hearing would have compensated for the lack of vision and that would have been his input source. But since he couldn’t hear, ALL his input had to come from his eyes. The double deficit made his brain work so hard to stimulate the vision center that it started to work, if not completely properly, at least functionally. Like I have said before… the brain is an amazing work of God, capable of much more than we can imagine.

Jesus is the great healer. So many times we read in the Gospels about his healing powers. People today often forget that in Him, can come true healing. John 9:18-25 tells the story of one man’s healing:

The Jews still did not believe that he had been blind and had received his sight until they sent for the man’s parents. “Is this your son?” they asked. “Is this the one you say was born blind? How is it that now he can see?” 

“We know he is our son,” the parents answered, “and we know he was born blind. But how he can see now, or who opened his eyes, we don’t know. Ask him. He is of age; he will speak for himself.”  His parents said this because they were afraid of the Jews, for already the Jews had decided that anyone who acknowledged that Jesus was the Christ would be put out of the synagogue. That is why his parents said, “He is of age; ask him.” 

A second time they summoned the man who had been blind. “Give glory to God,” they said. “We know this man (Jesus) is a sinner.” 

He replied, “Whether he is a sinner or not, I don’t know. One thing I do know. I was blind but now I see!” 

We are not afraid to acknowledge that Cayden’s healing came from Christ. Some would say it was not. But we were his parents. He was blind, and then he saw. His small brain, his small optic nerves, his ptosis, all worked against his vision ever working correctly.  I believe those biblical parents also knew the truth, but fear kept them from proclaiming it loudly. I urge you to not let fear (fear of people laughing at you, fear of skeptics, fear of other jealous people) stop you from sharing the truth you know in your heart. Healing can come, and does come from Christ alone.

Shira

Tomorrow’s installment… The Deaf can hear!

 

A mama’s instinct is usually right… 28 Days of Cayden, Day 6

Cayden had a tummy ache. Always. All the time. He fussed and complained whenever he was digesting it seemed. If he ate too much too fast, he would inevitably vomit a good portion of it up. The doctors, were concerned about his slow, almost nonexistent weight gain. But more irritating were the nutritionists at the WIC office who were always on me about his diet… pump up the calories, feed him more pedicure, add butter, cream, protein powder to his foods. I did everything they told me. He ate a TON of calorie dense foods. But then he would throw up half of it.

Of course, they didn’t seem to hear me, but I kept saying it. There is something wrong. There is an issue. This should not be such a regular occurrence. My 1 year old should not be so used to hearing her big brother gag & cough & wretch, so that she instinctively knew to run for the towels and bowl that was always handy at feeding time.

They wanted to blame it on GERD or slow motility, or aspiration, but I knew it was more than that. It was constant constipation, so much that he could not go with out suppositories and laxatives. Too many days in a row on those & it was diaper blowouts. Everywhere. I was changing a full outfit in the back of the van in parking lots of doctors offices. ALL. THE. TIME. And washing his carseat cover more times than I could count.

We finally got his pediatrician to order a full set of Upper & Lower GI X-rays. These were supposed to see what was potentially going on in the belly of my boy. After a painful hour of forcing barium down Cayden’s throat (not fun, considering the gagging and spitting and him not fully understanding WHY he had to drink this nasty stuff when mommy usually makes such tasty home-made food for him. We finally made it thru the x-rays. It was a full afternoon, if I recall correctly. Then we ended up having to do a barium enema too, because he wouldn’t swallow enough barium, added to his slow motility, made the pictures not really turn out the best.

So they were e-mailed to our pediatric gastro-interologist. And what did he say at our visit later that week? Nothing is wrong. It’s just constipation. Put more fiber in his diet. You really should consider a g-tube, that would make your life a lot easier. In his in-and-out, I-need-to-get-to-my-golf-game, sort of bedside manner. This guy never even acknowledged Cayden, his patient, sitting in his wheelchair in the middle of the exam room, just side-talked to me and then quickly felt C’s belly without asking (a BIG Cayden no-no).

I wondered then & now if he really even bothered to look at the X-rays. He always had been a specialist that did not hit me right. He was always in and out. Always, “You should g-tube.” With the overwhelming attitude of… “what does it matter, he’s a cripple.” Really, that is how this guy made me feel. And he was supposedly the best (if not the only) pediatric GI in town.

I let it ride for a while. We were in the middle of moving, and I had a lot on my plate. We kept doing the Miralax, kept cleaning up massive blowouts for my 3 year old. Kept the vomit bowl handy at every meal. I learned to feed him smaller meals, more frequently, like we did when he was an infant. This helped some. I did more fiber, applesauce in every meal, benefiber in most. No more bananas or other constipating foods. Pediasure was rotting his teeth, but it was what we HAD to have for the nutrients and meal-substituting caloric count. The nutritionist was on me, hassling me about weight gain, as no pounds had been gained in the last year. 18 pounds and holding.

We tried so many things, but nothing really changed. We kept massaging Cayden’s belly, working his legs, trying to get his time in the stander and walker to ‘activate the bowels.’ He was miserable. We would have to roll him over at night several times, and I believe we were actually helping his food move through his bowels, by rotating his body. He was cranky. It wasn’t like he was always cranky, but you could see the underlying discomfort & frustration he had by being constantly constipated, or worse, not being able to control the output!

Finally, I think it was maybe 6 months from the GI study, we were back in the GI office for a check-up. Again. “Still no g-tube? Still holding on to feeding him? It really would be easier to just tube him.” I was so tired of his talk. He knew my firm stance on feeding him as long as it was safe. I left, again no answers to our complaints, no solutions, just “See you in 6 months.” This guy really didn’t even seem to care that we were tired of the pain and run-around. I vowed on the way home that I would not step foot in his office again, no matter what I had to do or where I had to drive.

I was so angry that day, I got a speeding ticket on the way home from that appointment. 3 miles from my house. In a known speed trap. But I was FUMING! Talking to myself the whole way home. I know I am not crazy. My kid is not crazy. There IS something wrong!

DSCF1307

Cayden the morning of his surgery. Did he understand what we were doing? YES! And he was excited to know that his tummy pains were going to be fixed.

So, I went to the pediatrician and said, I must have a new GI. Who is the best around? Who else can we see? I didn’t care where it was. I would drive hours, I was used to that. Just find me someone who can figure out what is wrong!  So we got a new GI, based out of Wake Forest/Baptist, who actually said “Let’s think outside the box here & see what MIGHT be causing the problem.” We chatted for a while. He was friendly to Cayden. He looked at the x-ray films while we were in the room with him (that I had picked up and brought with me to speed along the process). He pointed out an area & almost immediately said “This is a classic genetic malrotation of the intestines. It is blocking his bowels. This is life-threatening and needs to be fixed yesterday. Go schedule the procedure for Thursday or Friday. This can kill his bowels. This can cause real damage & possibly kill him.”

We were floored. These were the same scans we had done over 6 months ago, that the other GI doctor had seen and found no issues with. It was astounding. The new GI, even went, and got another doctor to look at the scans & they agreed. It was definitely a malrotation, and happened early in the womb, (the intestines were not laid into the body quite correctly (another mid-line issue). Cayden needed immediate and severe surgery to correct this.

So, being the slightly thoughtful parents that we are, we said… let’s do it Monday, we have Skylar’s 2nd birthday party on Saturday, & we’d rather not cancel and have to post pone it.” He looked at us sort of cross-eyed. “Well,” we said, “Cayden has been living with this for so long, a couple more days won’t hurt, right? And we don’t want Skylar to have to spend her birthday in the hospital.”

DSCF1309

Cayden recovering. His tummy is not very bloated, but you can see he is still not feeling very good. I think he was a little mad that his pain was not over yet.

That is how Cayden had his most complex surgery. Well, maybe it ranks up there with some of his others… but it was the longest stay ever in the hospital, 10 days,  he was bloated and miserable for many of them, because his bowels just wouldn’t kick back into working after having been taken out, handled, and re-placed in his tummy. He also had his appendix removed, as a preventative measure. This is called a Ladd Procedure with Appendectomy.

After the surgery and recovery, we saw an immediate and noticeable difference in his ability and desire to eat. He could eat more, threw up very seldom, started to immediately gain weight & really wanted to eat more new foods. I believe that he realized that he could eat more now & that it felt better to eat, so he was going to! We were working hard on getting his chewing and swallowing to a manageable place, and now that it didn’t hurt to eat, he was going to try!

DSCF0320

Cayden eating oreos (and looks like squash) for dinner. Happy Boy!

I never regretted getting that second opinion. I do regret not doing it sooner. That ‘drive-thru doctor’ we had seen, could have caused Cayden the loss of his bowels, or even his life, and I never did feel like he was truly compassionate, or that he listened to any of my concerns.

This time period really taught me how to properly advocate for Cayden. How to be his voice and to make it heard, no matter how hard or how long it took. It can be intimidating, to call a doctor out on a bad diagnosis, but it was not him changing the diaper blowouts, getting up to clean up vomit several times a day, or to reposition a gassy and uncomfortable child in the middle of the night.

I see now that I was similar to the Biblical persistent widow in some ways.

Luke 18:1-8

Jesus told them a story showing that it was necessary for them to pray consistently and never quit. He said, “There was once a judge in some city who never gave God a thought and cared nothing for people. A widow in that city kept after him: ‘My rights are being violated. Protect me!’

“He never gave her the time of day. But after this went on and on he said to himself, ‘I care nothing what God thinks, even less what people think. But because this widow won’t quit badgering me, I’d better do something and see that she gets justice—otherwise I’m going to end up beaten black-and-blue by her pounding.’”

Then the Master said, “Do you hear what that judge, corrupt as he is, is saying? So what makes you think God won’t step in and work justice for his chosen people, who continue to cry out for help? Won’t he stick up for them? I assure you, he will. He will not drag his feet. But how much of that kind of persistent faith will the Son of Man find on the earth when he returns?”

Moms & Dads of complex kids, and of regular kids too… don’t give up if you think there is something going on with your child. Try to find out what it is. If the child can’t or won’t speak about it, you NEED to determine what is going on, however you can. Be persistent. Research, ask, don’t stop asking, and pray. As it says in Luke,

God will step in and work justice for his chosen people, who continue to cry out for help. 

He certainly worked justice for Cayden, his tummy aches were gone, his weight went up, and his smiles came back! Victory!

Thanks for sticking with me on the long post!

Shira

If you’re interested, click the blue links for a medical resource on the genetic causes for malrotation. Way down in the bottom, it says that a missing long arm of CH 13 can cause this issue… just what Cayden had!

 

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