Tiny Salutations

Tiny Salutations

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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.