Tiny Salutations

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Tuesday, April 28, 2015

Have a Cat in the Hat birthday party!


This month our son turned three!  I get excited about birthdays with him.  It feels like a big deal, because it feels like we worked hard to get there and because we didn't think we would have the chance to celebrate birthdays with him.  So each one is special.

This year was the first year I could ask him what he wanted.  He asked for a Cat in the Hat birthday party.  He loves Dr. Seuss.  A lot.  Which I am perfectly okay with, seeing as how much I love the Lorax.  So here are the things we did to have a Cat in the Hat party.  These ideas are good for a birthday party or to celebrate Dr. Seuss' birthday or to celebrate reading in general!
Red and blue streamers work well for Cat in the hat

Even the fireplace got jazzed up


I have got to say, streamers make a plain room look like a party.  I never was a fan of streamers, seeing as how it seems like a waste of paper (i.e. a waste of trees), but it really did make a difference.  You can buy a 2 pack of streamers for a dollar, and honestly I think you could leave the decorations at that. 
Thing 1 & 2 inspired paper ball decorations

We also bought some paper ball decorations that looked like Thing 1 & 2 hair. 

These were just a few of our character friends along the walls.  We had about 15 of them.

We got some big paper cut outs of characters to put on the walls too.  Now these were not a waste of paper in the least.  He loves them so much that they go perfectly in his room, or once it is finished the micro house (aka school house until we may ever move in).

Vegan cupcakes with bookmark favors

We made vegan cupcakes and topped each one with a Seuss-themed magnetic bookmark as favors.  We served pink sorbet on the side (this is from "The Cat in the Hat Comes Back" where he is supposed to clean up what ends up being pink snow). 

Hard work blowing out a candle

His lungs are really weak so it took him many, many tries to blow out his candle.  He ended up laughing and mostly blowing it out by the wind of tossing his head at it (and I helped a little). We are working very hard at getting him strong enough to make sound through a whistle.

Mom-made Cat in the Hat bean toss

Mom-made Cat in the Hat bean toss

Fishing for all the things the Cat in the Hat has to pick up at the end of the book



He's caught one!

Fishing is a little easier on the floor

This is a game that will get use again and again

 I made some games for the little ones, but there was so much going on that they weren't entertained for too long.  This was the first year we could really do games though, so it was still fun.  I bought a bean toss board previously to use for physical therapy.  So I painted it white and made it into a Cat in the Hat bean toss.  I also made a magnetic fishing game.  I drew all of the things that the Cat in the Hat has to pick up at the end of the book, cut them out, and put metal clips on them.  I tied a magnet to a string and a stick.  They sat on the bed and tried to pick up the pictures with the fishing magnet. 

Opening gifts

He really loves books.  He opened it right away.  Every book he said "What?!" in excitement.

He likes this dinosaur and immediately started singing "Them Bones" by Alice in Chains.  Some moments are priceless.

Opening gifts

Aunt Ashley helping cousin Alice open a candy

Of course all of the men have to play Minecraft for a bit

I just love this one of our family friend.  Ain't she gorgeous?

And you've got to have a Cat in the Hat from great grandma to make a Cat in the Hat party complete

It was a nice party and Layne stayed in control surprisingly well.  He was having a lot of behavior issues at the time.  His asthma was really bad for a bit.  He would cough if he moved and if he tried to run or got too excited he would have a coughing fit so bad that he would fall over, or even a few times throw up.  There were days that he would have labored breathing just sitting there, let alone having any fun.  That combined with all of the excitement and all of the changes around here, he was quite overwhelmed.  We had to bring out our whole arsenal against Sensory Processing Disorder.  We finally had to give him heavy duty steroids to lift him out of his asthma and crack down on our routine, and he is all settled down again.  Back to our sweet boy again. 

We were watching a movie together, and a woman was crying because she found out she had cancer.  Layne asked me why she was crying and I said that she was sick.  He said "Sad.  It's okay.  It's only sick."  It's interesting to see how he feels about being sick after he has been through so much illness.  I think children have something to teach, as much if not more than adults.

Lots of lab work...

As for me, since I have had a lot of questions, I am still in the wheelchair when we go out, but try to walk on my own in the house. A lot of the time I can walk in the house, but sometimes I can't.  I still have not met a doctor yet that has seen someone lose phosphorus.  I get tired, have to do weekly blood work, and take lots of meds for now.  My general doctor said "Everyone is unique, you just happen to be unique in a way that is interesting to doctors".  Hmm, great.  We were finally all well enough at the same time to go to church last Sunday, so that is a good sign. We have had a lot of love from the folks at our church, which we have appreciated very much.


Friday, April 17, 2015

Natural Easter Egg Dying & Easter at our house




Okay guys, I know it has been too long since my last post.  And honestly, I was too tired and a little blue.  So every day I thought "I should write a post", and then once the little guy was asleep, and I could think, I just went to sleep too.  This past month has been so crazy with being unable to walk, that everything got mixed up and nothing got done.  So I am attempting to get things back on track.  Rejuvenation!  And what better way to feel rejuvenated than with a post on Easter!  The rising of Jesus and the lifting of my heart.

So this year, Easter was spent at home for us. We all had those pesky cold viruses, which in our house is not just a stuffy nose, but a big deal.  Layne had a fever and a particularly hard time breathing.  In fact, his breathing continued to decline after he was sick and he ended up needing urgent care (no ER though!).  My husband had a fever, and although I was quite sick lungs-wise, I escaped the fever.  So, since I pray every time that Layne goes to Sunday school that no one brought their able-bodied children to Sunday school with a virus, I never bring Layne anywhere that is not absolutely necessary, especially Sunday school, when he has a cold.

We spent the day hunting for Easter eggs, reading Easter books, and dying Easter "eggs".  Layne spent quite a bit of time throwing his hands in the air and saying "Hosanna! He is risen!" in a way that only children can really do.  The end of this post will have pictures of our day, but first, I want to tell you how to dye Easter eggs with natural dye.

Here are some photos of our eggs:






To make these, you will need:
    fake or real eggs
    ingredients to use for dye (see the dye section below)
    bowls
    a pot for boiling
    the toe ends of old pantyhose- about 6 inches (you can use old pantyhose for a lot)
    plant pieces for prints
    white vinegar (also good for everything)
   
First, we bought fake eggs from the store.  You can get them at craft stores, or even department stores once it gets closer to Easter.  I bought our carton for $2.

Next, you will make your dye!  This is fun.  It's all about experimenting.  You can look for things in your yard to use, which is super fun for the little ones.  Layne and I went out in the yard for Easter hunt #2: looking for materials to use in our dye and to use for prints (I haven't gotten there yet).  He had lots of fun and can identify a few of the simpler plants now.

To make your dye, you will briefly boil each ingredient in a small bit of water.  How much water and how much ingredient depends on how much dye you want to make.  I didn't measure it, but I probably used about 2 cups water for each.

These are the following ingredients we ended up using:
        blueberries- darker blue
        blackberries- purple blue
        paprika- orange
        cumin- light yellow
The blueberries and blackberries were fairly close in color.  Both berries produced rich color, while the spices produced pastel colors.

Once your dye has come to a boil and you can see quite a bit of color, strain it if there is any plant material there (like the berries in our case).

Add some vinegar (approximately 2 tbsp.) to the dye.  And let cool.

Now, you get to dye the eggs!  If you want plain eggs, just put them in the dye at this point.  It is important to point out a few things here.  The fake eggs are hollow and float.  We could not figure out a way to keep them submerged.  If you use real eggs and hard boil them, they will sink, and dying them will be much easier.  The other thing to point out is that natural dyes can take much longer to dye, especially if you are looking for a rich color, like we got with our berries. We left our eggs in the dye over night to get deeper color.  I would think that the berry dye could leave a pastel color fairly quickly, but the spices we used probably wouldn't, especially the yellow.

If you want to make prints, you have to be even more patient. So this may be an activity that is better for older kids (or Mom!), while younger kids will probably want to just dye them.  Encourage their creativity in whatever they choose to do. It's fun, afterward, to see how everyone dyed them in their own style.  Okay, so back to the prints.  Take your plant piece and make sure it fits your egg by laying it out on the egg how you want it.  Once you have the composition you want, hold the plant there with one hand, while placing the egg in the toe of the stocking.  Place it into the stocking so that the plant is toward the toe end.  The stocking will want to pull on your plant piece so make sure it holds it onto the egg the way you want it to look.  Tie the end of the stocking so that it holds the egg tightly.  You want the plant to be pressed onto the egg. Once it is tied, you can dye it!  Just place the egg in the water the same way you would with a plain egg to dye it.

We left our eggs in the dye overnight.  To keep them submerged, we placed full pop cans on top of them.  Happy egg dying!

The rest of this post is pictures of our Easter day. 

Easter egg hunt

Easter egg hunt

Easter egg hunt

Easter egg hunt

Easter egg hunt

A hidden egg

Easter egg hunt

Easter eggs

Our dog helping with the hunt

Exclaiming "Hosanna! He is risen!"

Evaluating the haul 

Layne had fun pointing out all of the dandelions in the yard

A gall on our salmonberry bushes- there are tons

A robin enjoying spring

Wednesday, April 1, 2015

Walking, breathing, testing, growing, losing, and... birds

As I am writing this blog, my son is lying next to me napping.  We are both virus laden right now.  A cold in this house is not just a cold.  It's much more sinister.  Earlier I coughed so badly that I blacked out, but I can handle it.  My son though.  I watch his absolutely perfect face as he sleeps, so sweet and full of love, as he stops breathing over and over again, dozens of times.  It is terrible to not be able to help him, but no one else has yet either.  It is a desperate feeling that I try hard to shut away, but as I continue to hear his snoring cut off, choke, and start again, continually, my heart aches for him.  He is not having as much trouble while awake, just coughing, but during his sleep it is heartbreaking.  Only four days of fever so far though, and he has not just been limp so that's good.  Hope is what keeps us going.  Hope and faith are essential to our lives.

Well, I have some health updates and photography to share with you all, and I have apparently been particularly wordy today.  First though, I want to thank everyone that has shown our family love and support over the last weeks and over the last three years.  Everyone from family to friends, fellow church-goers to plain strangers.  We have had more help in the last few months than I have probably had in the rest of my life combined.  A special thanks to Suzanne Tiger, Amelia Kolb, Suzanne Strom, Shannon Smythe, and my dad John Monroe, our church collectively, but there are so many more people that have helped in so many ways. 

It particularly strikes me how awesome strangers are, who have no emotional investment in our family.  There was a man a few weeks ago that paid for a box of Girl Scout cookies for us, but left before we even knew who he was, let alone thanked him.  And a young man stocking produce a while back, saw that we were struggling with calming Layne down during a sensory overload and gave us a fruit leather free of charge, which is exactly what we use to help him when he is biting himself and therefore exactly what we needed.  The countless strangers that have helped me open doors with my wheelchair or the waitresses that have accommodated our abnormal requests to keep Layne safe while eating.  The lady that paid for my eye exam while my son was in the NICU, because she overheard that I couldn't pay, but also couldn't drive to the NICU safely without glasses, and left before I could thank her.  And again, so many more strangers with beautiful hearts that I wouldn't ever see again.

So now, health updates. 

Yesterday, we had appointments for Layne from 10am-6pm.  A full work day.  We made a teeny bit of headway about what is going on with our beautiful baby boy's breathing.  We have no news regarding his sleep study and won't have any for some time.  He saw an asthma and allergy specialist though, who was a great doctor, and we look forward to working with her in the coming years to get a handle on what is happening.  She said we are absolutely on the right track to find out what is going on.  His sleep study was a great first step, but a visit with a neurologist is also necessary (which he already had an appointment with) and in the future a pulmonologist as well.  He is too young for pulmonary function tests, but will absolutely need them once he is able to do them.  They will give us a little more insight into how badly his lungs are damaged and scarred.  For those that do not know, pulmonary function tests are not "hard" to do, but you have to be able to follow directions well, and a two year old is unable to understand what they need to do.  They give you directions like "Breathe all the way out, then when I tell you to, place the breathing tube in your mouth and breathe in as much as possible".  So he can get them in a maybe a year or two.  For now, it will be hard to gauge how bad his breathing is while awake.  While at her office, he also got allergy testing done.  That requires 16 tiny needle pokes in his back, and my goodness was he tough.  He let out a little yelp during each set, and in between the two sets he said "Stop", but in just a calm annoyed voice.  Not even any crying.  He has been through a lot, but he is tougher than most adults when it comes down to it.  His resiliency astounds me.  He is allergic to dust mites and grass.  So we have to "dust proof" the house, which is really just minimizing places where dust collects, like tossing all but his absolute favorite stuffed animals and making adjustments to the organization and cleaning of the house.  I will write a post in the future about what we are doing to help with this allergy.  These allergies are not severe though, so this is only a small piece of the puzzle when it comes down to his breathing.  He certainly has asthma, which seems to be getting worse as he is getting more active, and he also has damage from his difficult past with his lungs.  The ventilator was absolutely 100% necessary when he was born- his lungs did not work at all- but he was on it too long, and it undoubtedly caused scarring in the lungs, which he may have to battle his whole life.  His lungs have also been damaged by the severe breathing trauma he has had as a baby, like the collapsed lung a while back or the times he has stopped breathing and couldn't start again when he was sick.  Those times were so bad that we would have to rush him to the ER, and he would require epinephrine gas to get his airway open so he could breathe again.  He has just had to literally fight to keep breathing, and all of the battles have left scars.  He also had an x-ray to check on his adenoids and sinuses, but we are waiting on those results. 
Allergy testing

He also had an appointment to check in as we approach his third birthday with his development coordinator.  At both appointments, we were told that we are good parents and that we know our kid amazingly well and are advocating for him well.  The asthma specialist had said that most parents cannot answer many of her questions about their child's history and I could answer every one.  I spend so much time every day thinking about how to help him succeed, and we have worked hard to get where we are with him today.  So it is really good to hear that from two independent providers in one day and to hear that we are doing the right things. 

As we are approaching Layne's third birthday, the things available to him shift.  The state development program for children under three focuses on him as a whole person.  They work on any areas of development that are behind.  Once he turns three, the focus changes to 'what does he need to be academically successful?', which is quite different.   A lot of what he have worked on in the program so far is how to make his challenges, which for the most part have medical issues at the root of the problem, easier for all of us to deal with and to make it more comfortable for him.  So as we are approaching his birthday, special education preschool was recommended as the next step.  Now I have been determined to homeschool him as long as it is the right decision for him and where he is at.  So since this was the recommendation, I was open to the idea and we had a meeting with the school.  We weren't given much time to decide, and after the meeting I was SO nervous.  I was nauseous for days, and I even cried once.  It is emotional for anyone to leave their baby at school I think, but it is a whole other ballpark when you have to worry about whether your baby is going to stay breathing at school and if the adults will know what to do when, not if, it happens.  It was clear during the meeting that Layne is more medically complicated than they expected, and possibly more so than they are used to dealing with.  There would need to be extensive planning to make sure that he would be safe at school, like how to accommodate him during snack time so he doesn't aspirate or how to accommodate him on the hour bus ride in case he stops breathing while no one but the driver is there or making sure someone can help him on the stairs or on the playground, for example.  There is quite a lot to keep in mind all day long to keep him safe.  It took us trial and error to learn it all and it makes me uncomfortable to put him through those same trials so someone else can learn.  The therapists involved were great, but I was not quite taken with the teacher to be honest.  I feel like too many people have the view of 'he has to grow up some day', which is certainly true, but I think that we also need to constantly remind ourselves that he is only three and life has been hard so far.  He may need a little more time and a little more patience.  It doesn't mean forget about it at all, but the opposite- to work even harder on things.  So I see no reason to throw him in the deep end so to speak. We decided that if I was this stressed out that I didn't feel he would be safe, this is not the right time to put him in someone else's hands.  I know how to teach, I know my son, and so far I have been quite successful in teaching him academics.  Academics are his strong suit.  Physical and sensory skills are his weak areas, and he will continue physical therapy and swallow therapy.  Right now, we feel homeschooling is the right choice for him.  That could change in the future.  I have to say though, that it is a hard choice for any parent of special needs children, and my heart goes out to every one of them.

Church egg hunt- snacks

Church egg hunt- crafts

Church egg hunt- he has an eye for detail so he is so good at egg hunting



I have not had many appointments for myself and have therefore not been able to find out anything more about how to fix my phosphorus issue.  BUT I have been walking!  Not a lot, but I can walk, all by myself, around the house.  I can walk all the way to the end of the house and back.  Alone.  I still fall sometimes.  And one time back and forth is about all I can do right now, but I couldn't even stand two weeks ago so walking 30 or so feet in both directions is awesome.  Hopefully in the coming weeks I will be getting a CPAP to help me breathe as well.  I am also able to resume so of Layne's care.  So there is not so much pressure on my husband, who has done a great job being the caregiver of two disabled people.

The not awesome part is that as my muscles have regained strength, I have been in quite intense amounts of pain.  It's almost like my nerves just woke up and realized they needed to make up for being asleep all that time.  The first few days of regaining strength, I couldn't move from pain.  I literally woke up early in the morning crying in pain, from an entire night of dreams about crying from pain.  So even in my sleep, I couldn't escape it.  I was still there, in my body, in my pain, even unconscious.  And that day stayed like that, just in a ton of pain, where I couldn't help by cry every once in a while.  I have a pain patch and have pain pills, and nothing can touch it.  I was in agony.  I am still in quite a lot of pain, but it is not as bad as a few days ago.  Every once in a while, I'd say once a month for a few days, I will wake up and the only way I can describe it is that is feels like every one of my joints is exploding.  And I just cry. All day.  And that sounds like I am just a wimp, but really, I didn't use pain medication after my C-section until 2 weeks later after I was trying to do too much to soon.  So I can handle a bit of pain, but the pain from lupus is just wicked.  Being in that much pain starts to make you think irrational thoughts a little. Like cutting off your legs or hands or suicide.  Not that I would do any of those things (thank you frontal lobes!), but you just plain get desperate feeling.  So to help myself feel a little brighter, I would normally go on a hike, but I still need the wheelchair every time I go out of the house, so a hike is a no go.  But there is one more thing that really works to lift my spirits and that is photography.  I used to be a painter, for at least 10 years.  But I can no longer hold the brush steady, nor do I have the arm and hand strength, so I cannot paint  anymore.  Sure I could put paint on paper, but I know I would find myself furious with myself for being unable to make my hand do what I want it to.  Photography though, I can do.  Taking a beautiful photograph is like making a painting all in one second.  So I went on a paved trail out to the small lake near Whatcom Falls to find something to photograph.  So I will share some of my favorites here...















Right now is hard, yes, but as these photos can attest, we are still finding beauty in our lives.  We have to actively remind ourselves sometimes to go and find something to make that day meaningful, but it is there.  And the biggest one?  Layne is turning THREE!  My gosh, this kid is growing up too fast.  This is a wonderful age, and I wish we could live in this time forever, even with all of the difficulty, because he is blossoming into the most amazing thing I have ever witnessed.  It is truly beyond words to watch your own child grow up and experience the world.  Anyways, birthdays are a huge deal for us, because we didn't think we would celebrate any with him.  So each one is a huge accomplishment, and he works hard to make it to each one and to conquer all of the things he learns on the way. 

As far as the micro house, I don't think we will ever be able to live in it.  It is an amazing idea and could work for, I think, most people, but it presents some issues with us.  I think I made it seem as though the laws were the biggest problem, which they are an issue, but if you talk with the city or county, many people are able to work something out.  A bigger issue is that we have medical equipment.  My wheelchair cannot fit in the house and our electricity system cannot sustain one CPAP, let alone two.  If Layne needs more assistive devices, I'm not sure what we could accommodate in the micro house.  So it is a beautiful dream, but like many dreams that illness has taken from us, this too will be taken.  It is a bummer, yes, but my energy is best spent worrying about our life right now than to grieve this loss, of which is really a material loss, not an ideal.