We Are On Vacation…But Not The Kind You’re Expecting!

Tuesday mornings in my world are initiated with a whirlwind rush of activity, noise, and stress as I round up three munchkins who all have minds of their own and do not like to do things on a schedule, and try and get them out the door and into the car in time to make it to preschool. I often feel harried, haggard, and can feel my frustration levels rising as I am trying to wrangle all the kids into coats, shoes, hats, car seats, you name it.

With coffee in hand, however, the day slowly improves, my heart rate drops back down to the normal range, and my stress meter normalizes again as children are hugged and kissed goodbye, and the morning becomes a time I have come to cherish with just Noah to keep me company.

This morning Noah and I were taking a jaunt around Costco. We were lazily meandering through the aisles, looking at all the toys, perusing the book selection, and chatting away to each other, when the phone rang.

I looked down to see who it was, and it was the number that always comes up when someone calls from the Alberta Children’s Hospital. I answered the phone, and was greeted by someone from Sleep Services, calling to follow up regarding Jake’s last sleep study (which was at the end of September).

{SIDE NOTE: At the last appointment I had with the Sleep Clinic, they warned me that Jake’s carbon dioxide levels had been elevated for the past couple of sleep studies, and that they were going to use the study in September to decide whether or not they should switch him from a CPAP to a BiPAP. Basically a CPAP is one continuous pressure, where a biPAP is a mixture of two pressures, essentially doing the work of breathing in and out, and therefore helping to eliminate more of the carbon dioxide that needs to be eliminated while sleeping.}

It was this context that was forefront in my mind when I answered the phone.

Imagine my utter shock and surprise, then, when I was greeted with a very different conversation.

“Jake is going on vacation”, she told me. “He’s going on a CPAP vacation”!

She then went on to explain that Jake’s last sleep study had been normal! Not “normal for kiddos with Down syndrome”, not “normal for Jake but still severe for the general population”, just simply normal!

His AHI (number of times he stops breathing in one hour) was 1.2. A typical AHI is approximately 1.5!! (and just as a measure of how incredibly amazing 1.2 is, remember that the first sleep study he ever had done his AHI was 94!!)

His oxygen levels were good. His carbon dioxide levels were good. His AHI was actually higher (1.8) for the part of the night when he was wearing the CPAP machine then for the part of the night when he was just sleeping normally!!

So, Jake gets to go on a vacation from the CPAP machine for 6 whole months!!!

They are going to do a repeat study in 6 months, to follow up. They said that sometimes CPAP therapy actually helps bring down inflammation in the airways, and so they don’t know what will happen in these next 6 months. Perhaps without the use of the CPAP machine, his airways will become re-inflamed and he’ll have to start back on the CPAP again. Or perhaps he has grown to the point where he won’t need it for the foreseeable future. What lies ahead is uncertain, but one thing is certain for now…

We are on vacation baby!!

Seriously the best news I’ve heard in a long time:)
This is us, celebrating with ice cream after preschool!

 

[31 for 21] ~ He Leaves an Impression…

Scene 1:

Jake and Cole are at their weekly gymnastics class (more on gymnastics and inclusion in another post…). It is the middle of the afternoon. I am standing in the waiting area, trying to keep Noah occupied. Noah is only 18 months old, and gymnastics falls smack dab in the middle of nap time, so keeping Noah entertained and happy is a chore! I am simultaneously trying to make sure Noah doesn’t get his hand stuck in the vending machine (which I believe he stole money out of, since I found a quarter in his hand as he was playing!) and trying to keep an eye on the class in an effort to make sure Jake is following instructions and not jumping into the foam pit without supervision (hypothetically speaking of course!). As my brain is firing in ten different directions, I hear a voice behind me:

“Are you Jake’s mom?”

“Yes!” I reply. “How do you know Jake?”

“I am a nurse at the Children’s Hospital, and I remember being his nurse one time when he was admitted. He is such a great kid!”

Jake hasn’t been admitted to the hospital for a year and a half! Talk about leaving a good impression…:)

Scene 2:

We arrived at the Children’s Hospital a week ago for a routine overnight sleep study for Jake. We were ushered upstairs with the other sleep study participants, and showed to our room for the evening. Two technicians came into the room together. One introduced herself as the person who would be our technician for the night, and I remembered her from a previous sleep study. The other one just came in to talk to Jake and say hi to him, and I remembered her as being a technician from an even older sleep study. They were both so excited to see Jake, and their comment to me was this:

“We fought over who was going to get to be Jake’s technician tonight”!

Impression left…

Scene 3:

This morning Jake had an ultrasound before school. He played happily in the waiting room until it was our turn to go in. As we were following our ultrasound technician into the room, another employee looked at me and said that she recognized Jake, but she couldn’t place from where. I suggested that we had been to the ultrasound place before, and perhaps she had seen him then. As we were coming out of our appointment, she was waiting for us.

“I know!” she exclaimed. “Were you guys at the Ups and Downs Walk this summer?”.

(Ups and Downs is an organization in Calgary that runs events for the Down syndrome community, and every year they do a family 3K run/walk to raise money and awareness.)

I replied that we were at the walk, and she excitedly exclaimed that she too had attended the walk with her little one!

There were hundreds of people at this walk, and this was a family that I was not familiar with. But still…Jake left an impression…

So far in his little life, all of the impressions that I have heard about have been positive. Oh how I hope that this trajectory continues. My prayer for Jake is that his impression comes not through his diagnosis of Down syndrome, but rather through the impact that he makes on the world, and the influence he is on those around him.

I’d love love love to hear what impression Jake has left on you! Comment, message me, email me, or let me know somehow! Maybe I’ll try and compile all the responses into a post…that’d be kinda cool!

 

Make a Joyful Noise…

…because Jake can hear it!

Yes friends, you read that right. My son can hear!

The journey has been arduous. The saga has felt unending. The obstacles have seemed insurmountable.

From the time Jake was a tiny babe of 5 months old, we knew that he had conductive hearing loss, due to fluid build-up in his ears. For the past four years, we have waited for those tiny ears to grow, so that tubes could be inserted to drain the fluid. We have struggled with hearing bands, hearing aids, more hearing tests than we could ever have imagined, failed surgeries, and so much more. Last month, we finally got tubes for Jake, the fluid was drained, and it was waiting time to see if it would actually work.

Super early on in the journey! This is called a “Baja headband”…basically does what hearing aids do but less intrusively!

Last week we had a follow-up hearing test at the hospital. These hearing tests are sometimes hard for Jake, as they require a lot of attention, and to sit still and follow instructions for long periods of time. The last test we had was deemed inconclusive, since he had a hard time cooperating. This time, however, he rocked it! He had an audiologist administering the test, and another one in the sound-proof room with us, helping him focus and concentrate.

When the test was done, the audiologist came in from the booth, looked at me with a smile, and told me that he had done a fantastic job. She then showed me his results, and he was in the normal range across the board!! Not only that, but she officially told me that Jake no longer needs his hearing aids! I looked at her, turned to Jake, and gave him a great big bear hug, tears of joy streaming down my face. It was such an amazing moment, to see something come to fruition that we have hoped for and prayed for during these four long years.

We will consistently go for follow-up tests, to make sure that everything is on track in the hearing department, but Jake has been officially discharged from the hearing aids, and declared to be in the normal range for hearing.

So make a joyful noise! We sure are…!!

 

Fifty Shades of Grey…

Disclaimer: This post has nothing to do with the book series / movie series “Fifty Shades of Grey”. But I bet I piqued your curiosity!

It often seems as though the older I get, the more I realize that life is not lived in the black and white that I used to imagine. Life, at least in my experience, is often lived in the shades of grey, the places in between, the fuzzy, messy jumble that comprises the middle. This has been clear in so many aspects of my life, but rings true again and again when it comes to Jake and his care.

When we were brand new on this journey through the world of Down syndrome, we clung to the black and white. We thrived off the “when…then…” mentality that was often mistakenly portrayed to us by medical professionals who were trying to provide us with the hope that we so desperately craved in those early days.

We found out when Jake was just a wee babe of 5 months old that he had substantial fluid build-up in his ears, and that as a result, he had some temporary hearing loss. The “when…then…” statement went like this: “when we can put tubes in Jake’s ears, they will drain the fluid out, and then he will be able to hear at a normal level”.

Sounded easy enough to us newbies. We clung to that statement for dear life. It was black and white. When he gets tubes, he will be able to hear. It seemed so reasonable, so simple, so comforting.

Now, four years later, here’s what we’ve learned:

– It took four years and five tries just to get the first set of tubes into his ears, as they were so incredibly tiny that the tubes were too big
– The tubes, once in, are not a surefire answer. There is the possibility they will not stay in. There is the possibility they will only last for a couple of months and then fall out. There is even the possibility that they won’t do the job properly (since Jake’s ears are still super tiny) and that fluid will remain
– Even if the tubes do their job perfectly, it is possible, because of the tiny nature of Jake’s ears, that he will always have some sort of hearing deficit. That he will always require hearing aids.

First time attempting tubes! Look how tiny he is:)

So much grey. So many unanswered questions.
In the midst of the uncertainty, however, we celebrate the small victories.

A few weeks ago, after four long years of waiting, Jake finally got his first set of tubes!!
And wanna hear the even more exciting news? So far, they seem to be working. It looks as though Jake’s hearing has improved!

A couple of weeks ago. 5th time’s a charm baby!!

Anecdotally, and through a very preliminary (albeit slightly inconclusive) hearing test, it has been proven several times over that Jake can hear better. He responds to requests when I whisper instructions to him (he never used to do this). He even heard me whisper a command and followed through with it when he couldn’t see my face, and therefore was not able to see that my lips were moving. In a follow-up hearing test last week at the Children’s Hospital, the Audiologist said that when she did the test with voice recognition, he scored in the normal range for hearing! (the test was inconclusive, however, because he wouldn’t cooperate for the non-verbal part of the test, which measures frequencies, pitches and technical noises).

We are elated, we are overjoyed, we could not be happier! Our baby boy is hearing better, and this brings us so much joy.
In the midst of the excitement, however, we are pulled back into the grey…until there is solid, concrete, evidence that spans a much longer length of time, and proves that Jake’s hearing is completely within the normal range once and for all, we still have hearing aids. We still have regular ENT appointments. We will likely need more tubes down the road.

It’s not black and white. But we are smack dab in the middle of the grey, throwing a huge party and celebrating the victories!

 

Learning to Breathe…

The past few weeks have been crazy.  Have been awful.  Have been stressful.

We are just now coming up for air, and learning to breathe again.  Literally and figuratively.

Our whole family got sick over Christmas break.
At first, I was just mad.  I had all these plans for our vacation; plans of doing things together as a family, providing our children with new and exciting experiences, getting away from the humdrum and routine pace of life and creating new memories to cherish.

None of that happened.  Instead, we stayed in the house.  We took turns being sick.  We coughed and sneezed and shivered and slept for what seemed like forever.  Some of us started to slowly get better, but poor Jake got progressively worse.  I took him to the ER at the Alberta Children’s Hospital twice, and the second time they admitted him.

And so, at 2 1/2 years old, Jake has now had his first official hospital admission.  With a diagnosis of Influenza A resulting in pneumonia, we stayed in the hospital for 6 days, because Jake’s oxygen was low, and he needed some help to breathe.

The good news?  6 days later, we were finally released, and Jake is on the mend.  The bad news?  We were released to go home on oxygen.  Jake does fine when he is awake, but his O2 levels were falling so much while he slept, that they deemed it necessary for him to have home oxygen for napping and sleeping.

Do you want my honest thoughts on this?

I am torn.

I totally get that we have an amazing medical system that is providing much-needed services for my child, and I feel blessed to live here in Canada and have access to all of this.  I feel grateful that my son was 2 1/2 years old before we ever had a hospital admission.  For a child with Down syndrome, this is a great feat.  I feel thankful for everyone who helped out, who supported us, encouraged us, helped watch Cole, loved us, and will continue to do so.

I also feel frustrated and upset.  We came home on oxygen, but there is a very real possibility that the oxygen is needed all the time, not just because of Jake’s illness.  It is totally plausible (and very likely) that Jake has sleep apnea, and that his O2 levels have been falling on a regular basis for his whole life, but because he has never been admitted to the hospital or had a sleep study, no one has ever picked up on it.  So, while I am thankful that we have a solution, I am also upset that there is a very real possibility that oxygen (or some other sort of breathing apparatus) is in our long-term future.  And while I would love to say, “oh well, no big deal, we will cope”, the truth is that I am upset that it is one more thing that my poor baby boy has to deal with.

And so, as I am learning to breathe within this new reality and landscape, Jake is literally learning to breathe…

 

Day 5 of 31 ~ A Day in the Life ~

Fridays are therapy days around our house:)

The Alberta Children’s Hospital and the Child Development Center here in our city are amazing.  They have a great team of people who are all collaborating with parents to give us the best help and resources possible.

On Friday mornings we go to a music therapy group, and an open play group.  During the music portion of the morning, we are led by a music therapist who works at the Alberta Children’s Hospital.  The time is characterized by lots of singing, actions, and hands-on experiences with instruments such as shakers, bells, rainmakers, other assorted musical oddities, and Jake’s personal favorite…the big, big drum:)

You may not know it if you were an innocent bystander watching our music therapy class, but each class is specifically designed to work on skills with the children.  From focusing skills, to appropriate signs and actions, to listening to instructions, to following a modicum of order and structure, the 45 minute class is designed to allow learning to happen, doing it through a medium that Jake absolutely loves.

The second half of the two-hour morning is taken up by an open play group.  During this time, the OT (Occupational Therapist), PT (Physical Therapist), SLP (Speech Language Pathologist), Social Worker, and Child Development Specialist are all present.  This allows for each parent to be able to speak with each specialist about their specific needs and/or concerns regarding their individual child.  And while this is happening, Jake gets to play!  Today they were playing with tactile toys, so they pulled out the water buckets and foam soap.  As you can tell, Jake was enthralled!

And while Jake was getting soapy and wet, I was learning about how to teach him “mmm” sounds (ma, moo, etc…), how to navigate the phase of teething and eating, what to work on with him with regards to gross motor skills, and some signs for farm animals that I can sign to Jake at home.  A productive day for all!

I will leave you with one more picture for today, just because I couldn’t resist!  It was chilly outside this morning, so Jake and Cole got to wear their matching hats:)
Cole fell asleep in the car on the way home, and so his hat had shifted to cover his eyes, but nevertheless, it is an adorable picture, if I do say so myself!