Sleep? Who Needs It?

Sleep has been a luxury we can't afford in our house lately. Going all the way back to his hospitalization in October/November, Isaiah hasn't had more than a few good nights of sleep each week, and sometimes less than that. We've been to every doctor that could possible help us with no insight as to why it is happening. We've tried many medicines and tricks to get him to sleep, but nothing works. So we are tired parents...

As I mentioned previously, we were sent home from the hospitalizations with a pulse oximeter. A glorious little device that tells us the saturation of oxygen in his blood, which we need to keep above 90 percent, and his pulse rate which needs to stay, roughly, between 55 and 140. If it gets outside of these parameters, an alarm will go off, and we will need to go check on him. Now why we didn't have one of these sooner, I'm not sure. It seems like a common thing for others with similar diagnoses, and it seems pretty important.

He used to take two medicines to help  him sleep. He had weaned off one of them in the hospital, and when we came home we noticed he just wouldn't sleep anymore. So we started him back up on a smaller dose. Well the second night we administered it, his pulse rate was so low, it was in the 40's. Although he was breathing fine, and his oxygen was normal, we worried and called the hospital, who advised us to call 911 because we couldn't wake him up. Good news: police, fire, and paramedics were in our house within minutes. Bad news: Isaiah had a ride to the hospital. He ended up being fine, but we decided we were never giving him the medicine again. However, we have no idea how long that had been happening to him, as we would have never known he had a low heart rate, and just thought he was sleeping great in the past. Scary, huh?

The second medicine that helped him sleep ended up making him cry every night when it wasn't taken in combination with the first. We went through about two weeks of adding and subtracting things, taking him to the GI doctor, etc. before we figured that out. He would scream at the top of his lungs for no physical reason we could see, and his heart rate would be setting off the high alarm. Once we took that out, he was comfortable and didn't cry anymore. But, he didn't sleep well either.

Now, sometimes he just wakes up throughout the night and makes enough noise to keep us awake. Sometimes his oxygen or pulse monitor is going off, and we need to run into his room and make adjustments. Sometimes he is crying. Sometimes he is laughing, hysterically, in the dark, for no apparent reason. But he has a very hard time just getting rest, and that means we have a very hard time getting rest. We are trying to up one of his comfort medications at this time, and it seems to be helping, but it is a slow increase so we will see how it goes. Fingers crossed...

Now, we know that babies = lack of sleep. Duh. But when we decided to have another little one added to the family, Isaiah was confidently sleeping through the night. Every night. So the thought of adding another non-sleeper to the household is making me anxious. I'm sure we will get through it, and everything will be fine, but it's not going to be easy. So for those of you that see me on a regular basis, please extend some grace my way. And forgive the fact that I may look like I just rolled out of bed...

Belle entertaining Isaiah with his Squigz. 

Isaiah loves his baby doll.
It's one of the things he requested with his Tobii Dynavox. 

Isaiah clearly not impressed with me taking his photo.

Isaiah in his stander. Pretty happy guy. 

Isaiah getting in some sleep when he can.
This was after he got home from school on a cold winter day.

Isaiah, Big Brother: Second Edition

Back in November we shared the news that Isaiah is going to be a big brother for the second time! And in December, we found out that he's going to have another little sister. Now, Isaiah can't tell us what he is thinking, but I'm pretty sure he knows what's coming this time around and he seems pretty cool with it. He loves his sister Belle so much and I know having another sibling to keep him entertained will be so beneficial for his growth and happiness.

Watching Belle and Isaiah grow together the past couple of years makes our hearts smile. They are so loving and caring. Belle understands that Isaiah can't do everything that she can, and she tries to help him out whenever possible. She watches John and I, sees what we do to help him, and helps him herself. She includes him in her play, and shows concern when something is wrong. She tries to participate in all of his daily cares. She always gives him a hug goodnight, and runs in to see him first thing in the morning.

I can't wait to see how the dynamic changes with another little one in the mix. It's going to be an adjustment for everyone, but such a blessing. The newest addition is due in the beginning of May.

Well they can't read yet but they seem pretty excited about this news. 

Belle is assisting in giving Isaiah a pretend medication through his J tube. 

One of them wasn't phased by Santa this year, the other one was a little scared. 

These two are so adorable together! 

No News is Bad News

Hi! It's been a while since I updated the blog. A lot has gone on in the last half of a year, so I may take a few posts to get caught up. Soon after I last posted, Isaiah wound up in the hospital for a few weeks. First, simply because his sodium was low, his blood counts were low, and he had been inexplicably tired despite getting lots of rest. And, as always, he puked a lot.

During the stay, they switched him from a g tube to a g-j tube, which has been awesome in the fact that he hasn't thrown up his feedings once since then! To go from him vomiting almost daily to not vomiting at all has been such an improvement, both for Isaiah and for us! I wish we would have done this sooner! The only downside is that he has to be on a continuous feed with his pump, but this actually saves us time. He just brings his little backpack with him wherever he goes.

Otherwise, we got no answers as far as his low sodium or low blood counts. They went as far as doing a bone marrow biopsy but found nothing to explain them. And it wasn't a virus, which would have been the obvious first thought. Since then, his counts have gone back up and down a few times, each time requiring us to have multiple hematology appointments but still no answers.

While he was admitted the first time they called a rapid response as he was sleeping. His oxygen got so low that they were really worried about him. They asked if we monitored it at home, and we said no, so we were sent home with a pulse oximeter. More about this glorious device later... Along with this came several tanks of oxygen, and more nebulizer treatments.

We followed this up with a 24-hour EEG and a sleep study. We did the EEG because he was having really severe startles that shook his whole body like a seizure. Fortunately, there was no seizure activity, but his myoclonic startles can get really disturbing to him, especially as he is trying to fall asleep. The sleep study shows that Isaiah has mild sleep apnea, both obstructive and central, which may help explain why his oxygen can get low at night.

So all that fun happened between October and November, and since then he has been a working puzzle that is almost impossible to fix. Every time we take a step forward, we take another step back. As I type this Isaiah is crying to himself, and I've tried everything possible to make him feel better. We have a distressing symptom protocol to follow when this happens, and the first step is to give him both acetaminophen and ibuprofen and wait for 20 minutes to see if it helps, which is what I'm doing. This has been happening a lot lately, and it really makes my heart and mind hurt. I just want my happy smiley boy back!

Trying to get some rest.

Belle knew what to do with the stethoscope the first time she picked it up. She is very observant and she wants nothing more than to help her big brother feel better.

That poor little face! At least he was resting. 

Belle giving her best friend Snoopy a nebulizer treatment.

Constant State of Joy and Mourning

When people ask me what it's like to be a special needs parent, I don't always know what to say. Isaiah is our first child, so for four years this was really all we knew. I often think, what's it like to not be a special needs parent?

Special needs parents aren't saints. For most of us, we didn't choose this role. But we did choose to step-up, to do the best we could, and to give our kids the best lives we possibly can. We didn't have any preparation. Our kids don't come with instruction manuals. Just like any other new parent, we make it up as we go.

But I can say this to sum it up: being a special needs parent puts you in a constant state of joy and mourning.

Mourning
Every day, everywhere you go, you are reminded of the things that "normal" kids can do. Normal kids who stare at mine while we are out and about. Normal kids who ask questions while being hushed by their parents. Normal kids who can do things so simple, like walking and talking, that my child will never be able to do.

There is a constant absence of time in our lives. Things that might be no big deal for other families require specific planning on our part. And with Isaiah being in a wheelchair, he literally can't go everywhere we want him to go (like hiking, one of our previous favorite activities).

Isaiah's little sister, Belle, is 18 months old. It is so fun experiencing "firsts" with her! Like her first words, first steps, first tastes of food, first dances, first run, etc. Even her first taste of chips and salsa today (she's mom's girl). But it is hard not to be reminded of all the firsts that Isaiah doesn't get to experience. I'll take out my camera to capture one of Belle's firsts, and realize I haven't taken a picture of Isaiah in a while. Then I feel the mom guilt. Guilt that I am happy for Belle's first, how crazy is that? 

Joy
We learn to celebrate the small things. Our children are miracles. Isaiah had a 3% chance of surviving past birth, and a less than 50% chance of making it past his first birthday, and now he is almost five!

Little things I never would have thought of are a reason to celebrate in our house. Isaiah slept through the night? Score! Isaiah pooped today? Hooray! Isaiah went three days in a row without throwing up? Let's party! These things seem mundane, but they make our lives a whole lot easier when they happen.

Things like getting refitted for his wheelchair, when he can finally sit comfortably again. Getting a stander adjustment, so he can stand up for over an  hour at a time. And working with a communication device, which proves that although he can't traditionally communicate, he can process the world around him (more to come on this later).

So between the two, as a special needs parent, I am on a constant roller-coaster of emotions. Every day is a win, but also a loss. I can be overcome with tears of sadness, and flooded with tears of happiness in the same day. It's a magical balance that no one can understand unless they've been in my shoes.

To all those out there who understand my struggle, thank you. To all my virtual friends who've helped me along the way, thank you. And to all those who maybe haven't been there, but try their best to help, thank you. I appreciate you all more than you know. But the most thanks to God, for always helping me through and giving me the amazing opportunity to be a mom.

One of our joys: what a good little sister Belle is to Isaiah.
Unconditional love. 

Work Life Balance

We've posted about this before, but it comes up again and again. Having any children, regardless of their abilities, puts a strain on families trying to balance out their working life and their family. Having a child who needs 24/7 care puts even more stress on families. Which leaves us making huge decisions in terms of our working arrangements.

As you know, finding a PCA has never been easy for us, as there are few who are reliable enough to count on in order to get to work everyday. In fact, we've only had one out of about seven that we went through that we actually felt comfortable with. We went through a nursing evaluation and found that Isaiah would qualify for a nurse to come and take care of him in home instead, but we ran across many roadblocks there too.

First, there is a shortage of home care nurses, so the likelihood of us having someone consistent was low. Having to train someone new in takes a long time, and we couldn't afford to take time off work everytime someone new comes into our house. In addition, do you know how hard it is to trust someone in your own home? Really hard. Especially considering some of the hardships we have gone through already.

So this spring, we decided that it was time for me to leave my job, and focus on the children. Now, I'm not one who EVER thought I would give up working. I love working, and I was always striving to do as much as I could with dreams of climbing the corporate ladder. So I didn't totally leave my job. I was able to stay on as a casual employee, to help out when others are out of the office. I work maybe 2-10 shifts per month, and those shifts are on my schedule so they are from 2:30-6:30 after John gets home from work. I feel rather fortunate to be able to do that, as it keeps my skills up.

Am I sad that I don't have the life I always dreamed of? NO. Staying home with the kids has been way more rewarding than anything else I could ask for. Is being a full time mom challenging? YES. It's way harder than going to work everyday, and I mean that 100%. But now, I don't think I would trade it for anything else! The love I feel and see everyday is amazing!

Belle climbing Isaiah's chair to say hi!

Isaiah getting a hug from Belle.

Belle holding Isaiah's hand. <3

Surgery and EEG

Hello everyone! Long time no posts. Everything has been going well for Isaiah. We've had a busy summer, and I hope to update you on some of our adventures soon!

Last week, Isaiah had two procedures. On Tuesday, he had a video EEG done. If you didn't know, an EEG monitors your brain activity. It is used to diagnose seizures and abnormalities. It was a 24 hour test, so we stayed at the hospital from Tuesday to Wednesday.

Isaiah's neurologist recommended this test because he has spells of uncontrollable laughing and or crying that are unexplainable. When I say that, I mean like he laughs so loud and hard he can barely breathe, he can't be stopped, and there was nothing provoking it. The same with crying. But, of course, this didn't happen while we were in the hospital for the test.

Regardless, they could tell us that, while the spells may very well be seizure activity, they are not causing any damage at this time so we don't have to worry about that. Which makes me feel good, because I didn't want him on any more medication. They told us that his regular brain activity is slower than "normal" but that it is right in line for kids with similar diagnoses. So, while we still can't help the spells, at least our minds are put to ease a little bit.

Then on Thursday we went back to the hospital for surgery. He was having the metal hardware removed from the procedure he had one year ago, botox in his salivary glands, and his regular botox injections to his arms and legs. They also did some phenol injections, which like botox, are also for muscle tone and spasticity.

As usual, things didn't go super smoothly while we were there, and despite a super long wait and a miscommunication regarding his medications. Isaiah did great! We went back home that night with only one added pain medication, besides Tylenol, and he has already weaned off both of them! He is back in his stander and was able to go into his wheelchair right away. Success!

Here is a pic of Isaiah with his EEG monitor on. His sister needed to sit right next to him in bed!

Where did Belle go?

The nurses put a sticker on his head, because... BATMAN!

When coloring gets too intense.

New Stander

Isaiah finally got his new stander this month! He hasn't had a usable one since prior to his surgery in July. After his surgery, his hips were so much wider, that he didn't fit in his old one. And thanks to all the red tape and bureaucracy in the healthcare system, this is how long it took to get a new one approved. It took hours on the phone just to get people to cooperate and do their jobs, when we knew it was medically necessary and able to be approved in the first place.

Now he stands for up to an hour, at least once but usually twice a day. He LOVES it! It gives him a new perspective. It is good for his muscle tone. It helps with his bowel function. And it gets him up from his harassing sister once in a while, haha.

Belle has adorably learned how to say Isaiah's name within the past two weeks. She says it all day long. She is always trying to be by him, to bring him toys, to rub his head, and to lay or sit by him. It is really sweet to watch. These two are going to stay the best of friends.

(Check for Belle photo-bombing the picture of Isaiah in his stander. Such a goofball!)

Our Normal

Isaiah is the greatest blessing we could ever ask for. He has taught us so much, including to never take anything for granted. While we do our very best to remember this everyday, it is sometimes hard to remember. What we consider as "normal" in our everyday lives, most couldn't even begin to imagine.

At least once a year, we have to be evaluated for any assistance that Isaiah might receive. Be it PCA hours, or nursing care, or even assistance for the many, many extensive things that Isaiah needs. Each time we do this, we are reminded how our lives are so vastly different from those around us. Here is an example of a typical day with Isaiah and Belle:

• Wake up at 6:30 a.m. to give him an injection of medicine for his diabetes insipidus.
• Get his bottles and medicines (there are eight of them as of now) drawn up for the morning, mid morning, and afternoon bottles, hope Belle doesn't wake up before you get Isaiah up.
• At 7 a.m. give him his first medicines and start his feeding pump, wrestle with Belle while she tries to get into everything and cries because she isn't getting attention.
• Between 7 and 8 a.m., give him a nebulizer treatment, a cough assist treatment, and suctioning, try to distract Belle by coordinating her morning bottle during this time and hope she happily feeds herself, feed her breakfast sometime in here too. If Isaiah is at all sick or congested, repeat these treatments every four hours. 
• Provide physical therapy stretches, stimulation via sensory activities, practice communication with his PODD book, etc., try and do things that will entertain Belle and Isaiah at the same time.
• About 10:30 a.m., start getting him ready for school, three days a week. He needs a rinse and fill of his feeding bag and more medications, hope Belle is ready for her nap during this time so she's not crying for attention.
• Finally get him on the bus at 11:30 a.m. If the nap is working, have a few minutes to get lunch in and wash bottles and medicine syringes while she is sleeping, if not, squeeze it in while she is eating a snack, then do my best to make sure her needs are all met and that she is getting attention she deserves, feed her lunch, and run errands while I only have one to carry/push around because it's impossible with both by myself.
• For non-school days, try and find activities to keep them both busy and happy for the afternoon.
• Isaiah gets home at 2:30 p.m., this is when Dad takes over (after 8+ hours of working himself) so I can work from 2:30 to 6:30 p.m. Isaiah is sometimes overstimulated and cranky or asleep. Coordinate another rinse and fill of his feeding bag and medicines, hope Belle is happily playing .
• Let Isaiah rest for a bit if he had school, otherwise try and keep both of them entertained and happy. Try changing his positions so he doesn't get uncomfortable. Change multiple diapers, all day. Do more therapy stretches. Make phone calls to order medicines or check on the status of equipment needs, county applications, etc. 
• Shot time again at 4:30 p.m. 
• Coordinate feeding dinner to Belle, trying to make food for us adults, keeping the house somewhat orderly, chasing Belle around, and still trying to find things for Isaiah to do. Let him watch some TV shows so he doesn't get bored. Re-position him every 5 minutes. 
• Start getting ready for bed at 6:30 p.m., including baths for both of them on most nights. Have to get in the tub with Isaiah because that's the only way we know to bathe him. Give him a suppository to help him go to the bathroom and clean him up. Get all his nighttime medicines ready, rinse and re-fill his feeding bag, get him positioned just right in bed and tuck him in. Get Belle ready for bed and feed her a bottle.
• 8:00 p.m. finally (hopefully) have both the kids in bed and breathe. Maybe try and fit a workout in? But feel so exhausted that all you can think about is getting in bed. Drag yourself to workout.
• 10:00 p.m. after cleaning up the house, working out, and showering, finally get to bed. Hope that you can sleep through the night. Get up at 11:30 p.m. to turn off his feeding pump, and randomly as either child is known to wake up at least a few times a week. 

THIS is our normal. It is us dedicating 100% of everything we have to take care of our kids. I'm not asking for any sympathy or support, just wanting our family and friends to know what we go through on a weekly basis. To know why we can't always meet up  or make plans when you want us to. To know why we sometimes come off as tired and cranky. To know why we feel bad about ourselves for the weight we have put on in the last 4 years but are trying like heck to get back off, wanting nothing more than time to workout or run but knowing that every minute we have is consumed by our busy lives. 

We love and appreciate each and every one of our friends and family. We wouldn't change a thing about our kids, nor would we make any decision differently than we have. We just ask for strength, love, patience, and continued friendship.

Isaiah is Four!

A little late on this post, but last month Isaiah celebrated his fourth birthday! He loves pirates and one of his favorite shows is Jake and the Neverland Pirates, so of course we chose a pirate theme for his party! It was super fun. We had a ride on the pirate ship (pontoon), some swashbuckling snacks, and a treasure hunt with gold doubloons a plenty. :-) 

Isaiah is by far the cutest pirate I have ever seen. I love that we are able to learn his likes and dislikes and make his parties as memorable and fun as we possibly can. Isaiah doesn't have to say a word, we know he is having fun and that he appreciates the littlest gestures. I love my special boy! 

Back to School

Isaiah's return to school was a little late this year. He was still recovering from his surgery. He finally made it back in mid September. And he was sooo happy to get back into his routine! Although it was pretty tiring for him. I love seeing his art projects coming home, and hearing from his teachers how great his days are going.

Isaiah had to get all new school clothes. Any that he had from before no longer fit, because after his surgery his hips are so so much wider. Luckily he just had a birthday! He outgrew his standing frame and his wheelchair too because of this. We were able to get his wheelchair seat re-done, but we are still waiting for insurance approval to get a new stander. What a pain! I feel bad because he loves to stand so much, and he can't until we get this.

Here he was looking all spiffy in his Jake and the Neverland Pirates shirt and his new jeans for the first day back to school.