Tiny Salutations

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Saturday, February 28, 2015

Seattle Children's and house plans

It has been a busy week here! And spring is starting early here apparently.





L had a visit to Seattle Children's Hospital and a swallow study this week.  His swallow study showed that he is likely aspirating when drinking fluids.  Aspirating is when the drink or food goes down the larynx instead of the esophagus where it is supposed to go.  So the liquids can then get into your lungs.  They didn't catch a full aspiration on x-ray, but they did catch his drink going into the larynx and then him pushing it back out.  She said that it was clear that he was aspirating and that we need to find a way to make drinking safe for him, because aspirating is dangerous.
Waiting at Seattle Children's Hospital

His visit to Children's was a "finally" moment.  First, he saw the sleep clinic.  She said that he is obviously struggling to breathe while sleeping.  She said that it is urgent for him to get a sleep study.  He has one scheduled in March.  The primary care doctor that he had after leaving the NICU told me when I brought up his difficulty breathing that it can't happen when sitting up.  I assured him that I was watching it happen, but he insisted.  He has a different doctor now.  We finally brought in a video and now everyone says "Oh my gosh, we need to do something about that right away."  So as parents, if you ever feel something is not right, don't let it go.  These issues could have been dealt with years ago.  He never even passed his breathing tests when leaving the NICU, which I was assured several times was okay.  This week there was another time that he stopped breathing so long that I had to get him out of his car seat and help him to start breathing.  He also saw the ENT, and one of his ear tubes is falling out.  That kind of stinks, because new ones means another surgery.  He said his tonsils look good and tiny, so that is not what is interfering with his breathing.
Head supports make squishy cheeks

We also got those pads that are supposed to support newborns' heads when in the car seat to try to open his airway more in the car seat.  It looks pretty funny on him since he is not newborn size.

Unfortunately, everyday things have been getting a little more tough.  The other day, my husband said 'so this is it huh? This is when you have too much limitations in daily life.' (poorly paraphrased)
We've raised not only a tree hugger, but a tree kisser



Now as far as our house, we have decided to stay in our rental for another year.  We will be able to take our time to find the right piece of land for us and to finish the micro house nicely instead of in a rush.  We are going to try to find land in Skagit County.  We were going to move south toward family, but my medical team and Layne's medical team are both here, and it doesn't make sense for us to move away from them.  So house progress may slow down a little, but we will still finish it soon-ish.   We did, however, get a truck that can pull the house!  It is a 3/4 ton Suburban.

Wednesday, February 25, 2015

Getting close to done!

Our house is coming along nicely.  It is getting close to done.  We have it insulated.  The only things we have left to do are build the furniture and put all the shingles on.   We used rigid foam board for the ceiling insulation and recycled denim for the wall insulation.  We also finished the trim on the outside. 
Cutting rigid foam insulation
Ceiling insulation installed

Finished trim around the windows

Insulated walls
Recycled denim insulation

We put an offer on a small piece of land.  Unfortunately, when we called the county to discuss our plan, they said no.  In Mason county, you can only live in an RV for 180 days.  Our house is registered as a travel trailer, is on wheels, and all the systems are fully self-contained.  So we couldn't put our house there.  It was not buildable land, so I don't know what you could do with that land. 

It seems that there is no legal place to put our house.  So, we may be forced to just travel in our house.  I just don't even know yet.  I really think that you should be able to live in anything you want.  It seems unconstitutional to make it illegal to live in whatever you want.

Lilliwaup view

Graveyard near Lilliwaup



L got a pair of glasses.  It's freaking adorable.  He has a swallow study today and appointments with the sleep clinic and the ENT at Children's this week.  Hopefully we will start to get some answers about why he stops breathing so much.

Layne's glasses
Unfortunately, I have had a really hard time with lupus lately.  There were a couple days that I couldn't walk even with my cane recently.  I also had to go to the ER, because I had such terrible rib pain that I thought something else was wrong- maybe something with my lungs.  I think it was just my ribs being swollen from lupus.  I was crying hard in the lobby of the ER, so better to be safe than sorry.  I am hoping things get better, since I am back on my full dose of chemotherapy.

Sunday, February 15, 2015

A window into the soul... of the house


Bathroom window

During window installation

Complete window installation

Windows from the inside

We have all of our windows up in our house! It's very exciting. The outside of the house is finished, except for the siding, which is going to take quite a while, and the trim, which is painted and being put up tonight.
The sealed roof- it is very hard to take a picture of from the homemade ladder

We also coated the roof in sealant. I think the roof was actually possibly not leaking anymore before the sealant. It is just so cold that the ceiling stayed wet for a long time. Jeez, winter construction. Now it is certainly not leaking, because it has been raining cats and dogs and there have been no wet spots!

We painted the inside with Kilz paint. I am aware that this is not the most friendly of paints, but mold is not good to breathe either, and I don't want to surrender the house to mold. I think the paint is better in the long run for our asthmatic baby than mold. We tried hot borax and vinegar and hot bleach (at different times) and it helped, but the mold came back. The Kilz did it's job.

Now we are ready to finish the interior. I think this part will go quickly. This is the part that people usually say takes the longest, but our interior is so simple that I really don't think it will take long at all. We have no plumbing or wiring to go in the walls. All of our systems are manually run, so the set up will be easy.

Our goal is to be done, except for maybe finishing the siding, by the end of this month! We should also have our land by the end of the month. This is really happening, and we are almost there!

A health update:

I actually have good news for once. My kidneys are operating top notch now. Yay! One less thing to worry about. Unfortunately, I have had complications with my chemotherapy though. And I have been in enough pain to need a cane to walk and unable to do a lot of things.

Dragging tree limbs around outside- sensory disorder work

The most adorable backpack ever held by the most adorable kid- sensory disorder work
Now the bad news, L has been so overwhelmed by sensory input lately. He is constantly biting himself and hurting himself. This is his last resort calming technique, so we know something is really wrong when he gets to this point. His therapists are really awesome and have been trying to help us to calm him down. His physical therapist even sent us a list of things to try at home. He is wearing a compression suit during the day, listening to a modified Mozart CD (which is an amazing help), redirecting biting to a chewie and chewy food or suckers, swinging him in a swing or hammock, wearing a heavy backpack (which is absolutely adorable), hiking uphill. It has been a bit exhausting for everyone I think. We have had a hard time pinning down what exactly the issue is. He is probably not getting good enough sleep due to apnea events. That is one reason. Also, his allergy medication may be making him irritable. We are testing that theory now, but the jury is still out. We have stopped his allergy medication and are unsure if we see a difference in his mood, but we can already see a difference in his breathing. Snoring came back, and he had another (shorter, though) blue lips episode. His asthma has also been a little worse when he is active. Whenever we go hiking or he is running around, he has needed his inhaler- BUT his inhaler works, so that's okay.

He is also getting a swallow study in addition to the sleep study. He chokes on drinks (water, soy milk, anything) with pretty much every cup he has. I thought this was just the way he is and did not recognize that this was abnormal. I thought he would eventually grow out of it and that he was just still too little to figure out how to drink properly. Apparently, kids or even babies, should not choke while drinking. Since he was so premature I have no comparison to find out what is normal. Sometimes I just think “he has had a hard road, maybe this is just normal for a micro preemie”. And sometimes, I am wrong. Anyways, if he does have a swallowing issue, this may resolve some of the apnea issues. It seems like some of the time, his apnea while sleeping is from choking on his own saliva, which is why the allergy medication helps some.

Thursday, February 5, 2015

A window!


New window from the outside

New window from the inside
We have one window installed. The installation is actually quite easy, but finding windows to fit is the hard part. Initially, we designed the frame of the house to fit our salvaged windows. Well, when we bought the windows, the circumstances didn't allow us to take a good look before we bought them. We ended up buying windows that were different sizes and some that were not even intact. So we have had to get new salvaged windows. To anyone building any kind of house, I highly recommend going to your local salvage store. We have one just north of us and another just south of us. It's absolutely wonderful, and there will be a post later regarding salvage materials.

Current state of the roof
 Unfortunately water is STILL getting in around the edges.  I am not sure where since the roof looks fine.  So we plan to put an aluminum sealant coat over the whole thing.  I think it may be coming in through the very top of the wall.  So we need to get the window side covered in shingles.  Building in the rain comes with a plethora of problems.  The obvious being everything is always soaked, but also adhesives don't work, exterior paint/sealants can't dry, silicone has trouble... goodness gracious.

I have been to see a pain clinic for the pain caused by lupus. Interestingly, they said that they believe my pain has a few causes. Lupus is attacking my joints themselves and causing damage- that part I knew. The pain in my ribs and some other areas are actually being caused by lupus attacking and damaging my nerves. There are steroid injections that may help that part. Fibromyalgia is causing muscle pain too. I may have to wait for the injections though, due to complications with my chemotherapy. Although chemotherapy has helped, particularly with fatigue, I still feel a considerable amount of pain and am still limited in what I can do. Sometimes I need to use my hands, to sew for example, and I cannot get my hands to do what I need them to do, which is extremely frustrating.
Moss (aka our yard)
Mud puddle (aka the rest of our yard)