Chris got two kisses from Oliver today! I am so jealous!

Ollie has had a busy day and he's already tired(it's 11:30), being awake from 3-5:15 am will do that to a 2 year old(and a 30 year old apparently).  He had PT this morning with Colleen and came home and swung on the hammock with Mommy then watched Daddy chop some wood. Then he went for a walk around the block with Mommy and Denise (his in-home nurse). It is gorgeous out! It's starting to feel like fall, though I know we have some time yet. Fall is by far my favorite season. The pumpkins, the apples, the leaves changing colors, the fall festivals...love it.

Sleepy....

Oliver hasn't slept through the night in over 3 weeks, why is he so happy and we are so tired?




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Strong

We hear several times a day how "strong" we are being though all of this. And as much as I appreciate the sentiment (and I do) I truly don't understand it. I don't feel strong, not at all, not even for one minute of the whole day. So I feel like a real fake, a big phony, when people say I'm strong. I don't argue with them, I just say "Thank you" but a small voice inside of me is shouting "No, I'm not!" Where is the strength in watching our little Oliver die? In watching two children die? I feel like we're just existing here in a sad, dark place and keeping it together is getting tougher by the day. If this is strong, what does weak look like?

Ollie has stopped blowing kisses and hasn't spoken a word in over 3 weeks. My heart is in a million pieces, we will never hear him talk again. The next time a child is talking your ear off and you feel like they're driving you bananas, give them a huge hug and kiss instead and please be grateful. There is nothing I wouldn't sacrifice to have him talking to us. His last word was "Go!" when we were pulling him in the wagon and he didn't think we were going fast enough. Silly boy, always wanting to go faster, he would have been a great runner like his Mommy and Daddy.




Sleeping in the car, a rare but pleasant sight.

Yah equipment!

We picked up some great equipment from a lovely woman in Farmington. She charged us only $300 for the items that her son had outgrown, if we had paid for them at full retail price it would have cost over $2600! An 89% savings if I have my math right, and I didn't even need to use a coupon. :)




Ollie in his new chair (we needed to order the shoulder strap online)




He seems very comfortable and happy in it!




Playing with the toys on his tray. How fun!




His new stroller! We have since adjusted the straps and foot plates and it fits very well! It is still tricky because he doesn't bend his legs and it puts a lot of pressure on his knees and hips having them out and unsupported like this; so we've since put a pillow under his calves and between the footplates and that seems to be working. We're looking into Botox treatment for his spastic leg muscles (on the advice of his Doctor) and that will help his legs bends and make him more comfortable in general.
Right after picking up the equipment he had an appointment with his neurologist at CCMC. Oliver is now on clonazepam daily instead of "as needed" but I honestly don't think the medicine works for him, I'll give it another week at the new dosage to see if there is improvement with his myoclonic seizures and anxiety, and if not I'll ask his Dr about trying something different. Since he started on it in June I never really thought it helped much, especially last night when we were up with Oliver from 2am-8:30am. His right leg and left arm kept jerking back and forth every minute or so despite 2 doses of the clonazapem. He was so tired (as were we!) but he was so uncomfortable that he just couldn't fall asleep. They didn't seem to hurt him, but they were definitely annoying. And because he was up all night he was really thrown off all day. He slept from 8:30-11:30am and woke up for lunch and went back to sleep for an hour rocking on Chris' lap. Then he woke up, ate, back to sleep...repeat. It was a long day!
Phew, time for bed! I hope he sleeps better tonight.

Oliver's Team comes through again!

Within a few hours of the insurance/equipment post a number of people contacted us with suggestions for places to find adaptive equipment. Zahra Jolly, our newest cousin through marriage, told us about getatstuff.com. After a few minutes of searching we were able to find a Tumbleform seat (the same exact one as the picture in the posting) and even a stroller, both at a fraction of their retail cost. The kicker is that they are both being sold by the same family and they're located within an hour of us.

We have an appointment at CCMC on Tuesday so we're going to swing by the seller's house first to check them out. We are really excited to have a practical, comfortable seating solution for Ollie.

Thank you to Zahra for the resource and to the several
others who offered their suggestions and assistance. Oliver's Team supporters are always there when we need them most and we couldn't be more appreciative.

This is the same exact one from last post. Amazing!




This chair retails for $1600!




Bonus cute Ollie picture:




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Food woes

Without even thinking about it I still pick up Oliver's favorite foods and put them in the shopping cart. Goldfish, cheese slices, Kashi bars.I still walk around with the mindset of feeding our son breakfast, lunch, dinner and snacks. I saw these 100% organic fruit roll up type things on sale 3 for $1 and immediately thought "Wow, those would be great for Oliver's snack at daycare" only to feel a sharp pain in my heart when I remember that he doesn't eat food anymore...or go to daycare.

From day one I took immense pride in feeding Oliver. When I nursed him I touted the benefits of it to anyone who would listen (and especially those who didn't want to listen and dared to challenge it) As he got older I loved hunting for healthy toddler snacks. Reading labels and keeping chemicals and other garbage out of his body. I loved buying veggies and fruits at the farmer's market and cooking them up in meals, or sneaking them in to spaghetti sauce, thanks Dawn ;). We had Oliver convinced that broccoli was a tiny tree so he'd eat them and I randomly started calling carrots "cookies" one night and after months of aversion he suddenly started eating them!!(haha, I know that's kind of a weird Mommy tactic)

I miss his face covered in pasta sauce and the kisses he would blow to us when he was pleased with his meal.

I miss this...so so much....

Awesome Cigna won't cover supportive seating because it isn't "medically necessary". Agggggggghhh. Neither is a bath chair, but thankfully we managed to get one to borrow from Birth to Three. Do insurance companies realize how dangerous it is to put a child with MLD in a bathtub or shower? He can't sit up on his own, he'd drown! How does that make a bath chair "not medically necessary"? We can try to hold him, but his muscle spasms and stiffness make it incredibly dangerous and he could hit his head on the tub. Anyway, we've had to get creative with how Ollie sits around the house.
Like this...in a car seat...




If it were up to Ollie he would sit on our laps 24/7, but we do need to use the bathroom every now and again.

What we'd really like is something like this...



For a few hundred dollars, we may just bite the bullet and buy one if we can't get our hands on a loaner.

This next chair is awesome, but costs over $2000! Are you kidding me? It is a certainty a great chair, but these companies are taking advantage of parents who have children with special needs. It makes me so angry.



I need some icecream.

Weren't we just here?

Heading to CCMC for a follow up appointment for Oliver's Gtube surgery. The site is healing great and he's tolerating his belly meals well, except this morning he spit up a little, which was not like him. I think he's gained almost a pound, we'll see. He has a little rattle in his chest, probably just a cold, but we packed our suitcases in the unlikely event they admit him.

I hope it doesn't rain today. Tonight is the night of the Rock Cats game that we'll receive $1 for every ticket sold. People don't like to go to baseball games in the rain!

House Arrest

Good news, the insurance company is paying for Oliver's formula. That should save us a few hundred dollars a month.

They've also agreed to give us 40 hours of nursing care a week but we're having some issues with that already. Cigna is one of only a few insurance companies that requires a caretaker to be home with the nurse while they provide care, fine, but they won't allow the nurse to leave the house, not even if the caretaker comes too. The nursing company has no problems taking Oliver out of the house, but Cigna won't allow it. So no walks in the park, no trips to the library, no aquarium. Stuck in the house, all day long. It's simply not right to keep a two year old locked up in a house all day. How incredibly boring and lacking in stimulation!

If Chris wants to leave the house, the nurse clocks out and goes home and he needs to take Oliver out all by himself. This is a difficult endeavor even to go to simple places like the food store. Out in public is where we would need the most help, managing all of Oliver's equipment and moving him in and out of his carseat and into wheelchair. Feeding him outside of the house is much more complicated too. Chris and I always take Oliver out together nowadays, it's too tough with just one of us.

So now we're not sure what we're doing, I'm even thinking of taking leave too and staying home, at least then the two of us can provide Oliver with the experiences he deserves.

Uncle Greg feeds Ollie his breakfast






Ollie in the new rocker/recliner/massager chair. :)

Feeling extra sad today

How can this be my life?
When asked by the priest on our wedding day "Will you raise your children up in the catholic faith?" I replied "lots of them" rather than a simple "we will". Everyone laughed, but I meant it, I've always said I wanted to have 5 children!
I'm the girl who adored playing "house" and "mommy" with her dolls growing up.
I'm the girl that thought about baby names years before becoming pregnant.
I went into teaching because I love children but also because I remember how awesome it was to grow up having my mom around during the summer and wanted to have those precious warm weather months to devote to my own children too.
How can this be happening?
So much has changed in a year. Last August our lives were perfect, we were living a dream. We had a beautiful son and had just found out I was pregnant with our second. We talked about getting bigger cars, finishing the basement and making it a playroom, turning our office into a second nursery, me taking time off to raise the children. This may sound cheesy, but Chris and I would randomly stop each other while walking around the house, give each other a kiss and say "I'm so happy" or "I love our life." Really. I feel like it was just yesterday. Life was simply wonderful.
What a difference a year makes. We wake up now and take care of our child, not knowing how long we'll have him with us. We can't stop his disease, there is no "miracle". We smile and laugh with him, but our days are filled with deep sadness, with measuring tube feeds, measuring medicine, consoling Oliver when his MLD causes him unprovocated irritability, managing his chronic pain, watching him lose every physical ability he has ever had, watching his cognitive skills decline, watching as he loses his ability to see and hear. It's painful, just existing through this each day, and today I don't feel very strong.

Thank You Oliver's Team!

Kate and I wanted to thank everyone who liked my mom's nomination on the Rock Cat's Facebook page. The Rock Cat's representative was very impressed with the number we posted. She said that a group like ours almost never wins this kind of contest due to it's lack of publicity and the fact that we were up against nationally known organizations. It is just another example of the amazing support that we've gotten from family, friends, and even strangers. We've gotten countless letters, emails, Facebook messages, and comments on the blog from people who we haven't spoken to in years. As we scrolled down the list of names of the nearly 700 people that liked the post and we couldn't hold back the tears. Thank you all.

Here's the flier publicizing the game on Tuesday, August 14th at 7:05 pm. Go Rock Cats and Go Oliver's Team!



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Good stuff

The past 24 hours Ollie has been in a lot less pain. We can pick him up and move him from place to place without him screaming, and we couldn't even do that before the gtube surgery. We don't know what's different, (maybe sufficient nutrition and hydration?) but we hope this level of comfort stays! Look at this happy boy watching Mickey Mouse Clubhouse. He's blown about 30 kisses today, what a love bug.





Ollie's breakfast.

In about half an hour we're heading to an appointment to get Ollie fitted for braces for his feet. The purpose of the braces is to bring his feet out of their constant state of plantar flexion caused by his tight Achilles tendons (a common occurrence in children with MLD). If we can reduce the plantar flexion we can take some stress off of his lower leg muscles and his feet and reduce the spasticity which causes him some pain.

Life at home

Adjusting to feeding Oliver through his tube has been interesting and difficult. It really is a good thing Chris and I work as a team, because I don't think anyone could handle this stress by themselves.

I feel terrible eating in front of him because I know he wants to eat by mouth if he could. He hasn't eaten anything by mouth in a few days now. Even though he passed his swallow study with flying colors. Swallow study and real life are very different. During the swallow study different consistencies of liquid were put into his mouth using a syringe, in very small amounts (teaspoons at a time). He didn't have to chew, or work the food to the back of his throat with his tongue, all he had to do was "gulp" and swallow. If we give him food in real life it is so much work for him to coordinate all of his muscles to push the food back, gulp and swallow that he ends up crying hysterically after only a few spoonfuls. Imagine having to focus and try so hard just to swallow some yogurt. It's terrible.

He's tolerating his "belly meals" very well, and it sure makes giving him his meds easier because they just go into the tube too. We'll check in a few days to see if he's gained any weight.

Good news is that Cigna approved us for the 40 hours of nursing a week (until the end of the year). Chris is going to be staying home with Oliver when school starts because his district is being amazing with him taking leave and Cigna requires a caregiver to be home with the nurse so one of us needed to be home. After all the tragedies we've been through in 2012 between losing Miles in January and Oliver's diagnosis in April, I have no sick days left and unfortunately my district doesn't have a "sick bank" for me to tap into. We simply can't afford to care for Oliver long term if I don't go back to work. It breaks my heart.

Here is Oliver a few days ago with his new gtube. In 2-3 months in will replaced with a more permanent McKey button like the second photo.






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Day 7 - Our last day!

We are sitting patiently waiting for the word that we'll be discharged. At this point, we are more than ready to go home!

Oliver has been doing very well with his tube-feeding. He was on 30 ml per hour for 24 hours straight and didn't have any issues. This morning he had a "bolus" feed which is a fancy way to say he had 6 oz (180 ml) over a few minutes rather than hours. He sat quietly while we gave it to him and he is still comfortable. The nurse just told us that we'll do another bolus around 3 and, if it goes well, we'll be discharged.

Here's Ollie sitting up comfortably and actually giving some smiles this morning for the first time since surgery.




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Day 5- Such a Trooper

Ollie has had a lot of post surgery pain and we spent most of the night trying to make him comfortable. Morphine worked for the most part but he still had breakthrough pain and a few times it caused his heart rate to drop below 50 (way too low for a 2 year). On the other side, when he was feeling the pain his heart rate was in the 180s (like someone running around) and his respiratory rate was over 40 breaths/minute. The short shallow breaths were scary to watch, it looked like he was panting! Between a combination of Motrin, Tylenol and morphine we've been able to keep him as comfortable as possible considering the poor boy had a hole poked through his stomach and abdominal wall.

Ollie's buddy Addy came to visit (she brought her parents Erin and Chris with her). Thanks for driving all the way up guys, it meant a lot to us. Addy was giving Ollie kisses on his head, which normally he'd hate because girls have cooties, but he didn't mind them yesterday.




Last night we gave Ollie his medicines through his tube and everything went smoothly, in a little while the nurse is going to show us how to use the tube for his "feeds". I really hate that term, it makes me think of animal feeds, like chicken "feed". I think I'll just call them his belly meals or something nicer. We're going to start him on pedialyte and see how he tolerates it and then pediasure. He can still eat by mouth however much he likes but the pediasure will be used to supplement his calories and nutrients. Nana and Papa are coming to visit. Ok the nurse is here.

Recovery

Everything went well. His gtube (called a PEG) is just a little plastic button.

Ollie is sleeping in mommy's arms while we're waiting to move back up to our room.



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Out of surgery

Ollie's surgeon just informed us that his surgery was a success and that he's now being weaned off the ventilator and prepped to be brought to recovery.

Thank you all for your thoughts and prayers.


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Hospital Stay Day 3

So it's the end of day 3 and we're just hanging out. Last night was tough, loud alarms kept beeping and waking us all up, I felt like it was some type of sleep deprivation torture. We'd fall asleep, his IV line would get a kink in it and alarms would sound, nurse comes in to fix and we'd go back to sleep, 10 minutes later his heartrate monitor slips off, alarms sound, nurse comes in to fix and we'd go back to sleep. It was happening over and over again. I thought I was losing my mind and almost just unplugged everything! But who knows what they already have written on his charts about me for spazzing out on them for the past 2 days about the NG tube. I didn't want to add "crazy mother unplugs equipment" to that list. Then Ollie wet through his diaper from all the IV fluids and woke up screaming and soaked at like 3am. It wasn't fun, finally we got some rest from 4-7:30.

Today was nice because there were no tests, just waiting patiently for his surgery tomorrow. we took showers and went for strolls around the floor with Ollie in a loaner wheelchair. It was a million times more comfortable for him than the loaner we have at home so we're taking the steps to get him fitted for a better one. We've watched a lot of the Olympics.




Yesterday I yelled at a few more people about not getting an NG tube and I'm glad I did because he ate his food just fine today. A few different Drs and the nutritionist told me they were glad I fought against it and was his advocate because they can be really torturous for kids. You have to hold them down and shove it up their tiny nose and down into their belly. Then they spend their time gagging because there is something in their throat and sometimes vomiting. No thanks.

His Gtube surgery is currently scheduled for 11:30am, hopefully it won't be pushed back like sometimes happens. At 12pm tonight he will be NPO, which means he take anything by mouth anymore, just the IV.

Chris has been on and off the phone with insurance people, home nursing care people, patient advocate people, medical supply people and so many other people that I can't keep track! He's such an amazing Dad, fighting to get everything our little boy needs. It sounds like we'll have 5 visits of skilled nursing care between now and 8/14 and the letter from the hospital requesting 40 hours/week has been sent to our insurance starting 8/16. We'll see what they come back with, it feels like a negotiation. The home nursing company we will be working with already has 2 nurses set up and ready to go for us which is good, now we'll wait and see what Cigna says. Ok, time to get him ready for bed. Thank you everyone for your texts, Facebook comments, emails and thoughts and prayers. The support we have is simply amazing. Thank you.

Swallow Study Complete

Oliver did very well with the swallow study, he didn't aspirate anything but he definitely lets liquids pool in the back of his throat and gurgles it for a few seconds before gulping it down.

Let me tell you, it was a weird test to watch!
He was sitting in a chair in front of an X-Ray machine while I fed him various things and we watched the x-ray as the food and liquids made their way down his esophagus! It was bizarre!

12 hours on IV fluids

12 hours on IV fluids and we have a much happier boy on our hands. Swallow study and upper GI series/barium swallow is scheduled for 11:30.

We spoke with a few different Drs and no one agrees that an NG tube needs to be placed before a GTube. One even stated that it would cause unnecessary discomfort. We asked the MLD foundation president and she said no way and that she'd even call the hospital to advocate for us.



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