Tiny Salutations

Tiny Salutations


Thursday, December 17, 2015

Health Update

I have not done a health update in quite a while and I have been getting a lot of questions and requests. There has just been so much and it has been hard to process some of it. So here it is!

First off, we removed L from public school and went back to homeschooling. There was an incident (no airing dirty laundry here!) that made us lose confidence in people keeping him safe and healthy in school.  When we spoke with his pulmonologist, she said she absolutely agreed on removing him and that there was "no room for mistakes with a kid this sick". Speaking of which, he has been escalated to a more intensive clinic. This is a clinic at Children's that you can't just go to, you have to be escalated there once your child has exhausted the pulmonary clinic. It is a wonderful, actually, because there are six doctors there at once! It is more like a health conference on your child. He will be getting a few surgeries on his airway from top to bottom and these doctors will all be there to do the surgeries. The pulmonologist he was seeing decided it as best to pass his case onto a doctor more suited to the level of care he needs, and she will be at this new clinic.  He has also taken a break from his glasses to try to get a better idea of what he can see naturally. One of his eyes is lacking in development, and so he will likely begin patching soon. Patching is when you cover the good eye to try to get the bad eye to develop more and catch up. He has always had different eyes. He was born before he was finished making his eyes and was unable to use them at birth. Since he made his eyes after being born, they are not built the same as those born on time. They are anatomically different. We have heard before he may have albinism, as his eyes resemble those with albinism. His new eye doctor is less concerned about it, but we can't actually test him until he is older,

L is not handling the holidays well. He is excited and can understand what we are doing much better. And he lives and breathes The Grinch right now. He is constantly overwhelmed though. He did not handle Thanksgiving well. We went to a birthday party and then Thanksgiving dinner. He was overwhelmed for weeks. He was hurting himself, hurt through repetitive behaviors, and lashed out with aggression toward others. We did all we could to help him feel better, but it took a long time and, he is still not all the way there. Even just putting the tree up in our home has got him worked up. It is painful to see your child feeling so uncomfortable in their own skin. So for Christmas we a re trying hard to keep it low key. Lots of indulging in The Grinch and having Christmas stuff at home. No Christmas parties- even with family- and no big Christmas events in the community (except maybe Zoolights sometime!). We just want to keep him safe and someday if he can handle the holidays better, we may be able to do some of those things again.

I have been diagnosed with another autoimmune disease. That makes 6. It's called sarcoidosis. It makes granulomas (clumps of cells that look like bumps) in the tissues of any organ and damage that tissue. I had a huge part of the skin on my arm that was covered in it and found out through a biopsy. It may be in my lungs now or will be in the future. I also have lost quite a lot more of my field of vision. My left eye has much less of an area that I can see, but both have lost quite a bit. The doctor I had seen locally said it has gone beyond his expertise, so I have to go to a neuro-opthalmologist to hopefully get some ideas on what is happening and what we can do. I also tried physical therapy to see if I could learn to walk some, but the neurology physical therapist said there wasn't much they could do, that it was probably beyond a point of return.  We tried many different devices- AFO (a stiff brace that goes from your foot to just below your knee), KFO (nearly the same except from your foot to your hip), a walker, Lofstrand crutches (the crutches that hold on to the lower part of your arm)- and they decided a wheelchair really was best.  I have felt a little stronger some days, but much more painful. My lupus has reared its ugly head too. I have had so much joint pain lately that I have lost some of my range of motion. I am not able to dress myself anymore, among some other functionality I have lost. It is really quit a lot of pain. I have had times this month that I have been crying in pain, and I often find myself saying "I can't do this anymore", but I do. I guess it's just cathartic to say so. Many times when I try to move to adjust my position or use my arms, I automatically yelp in pain. It's no fun. My kidneys have begun to have trouble from lupus, along with daily fevers, hair loss, and lupus rashes. I have a very enlarged spleen from my autoimmune diseases, could be any one of them. So now I have to be quite careful so as not to rupture my spleen and hopefully it can be resolved some day. I don't have as much confidence in some of my specialists down here as many of them seem to say they've never seen some one like me and that there's nothing they can do. I am skeptical of some of the care I receive. I have also been painfully homesick for the last town we lived in.  I feel like that is the only place that will really feel like home.

Unfortunately, since my chemotherapy was not properly monitored, I caught some sort of viral illness. And it took me out badly. For three days, I didn't get up, didn't even need to use the restroom.  I just lay there in pain, without talking much. Now, over two weeks later, I am feeling much better, but still have not fought it off totally. I don't think I have viral illness still, but I have residual ear and sinus infections and possible pneumonia. I have been coughing up blood and blood has come out of my ears. When the doctor looked in my ears she said I need to see an ENT doctor, because they look "really bad" and very bloody. I couldn't hear for a little bit, but I can hear close to my normal again. I read lips to augment what I hear. If I can't see someone's face I often can't understand what they are saying. Then, L caught whatever I have, despite my efforts to keep him from getting ill. He fought it off much better. It did leave his respiratory system in shambles though. He has had breathing problems despite using the maximum dosage of his medications. He has had the more obvious breathing issues- stopping breathing during sleep and coughing when he moves around- and has also become weak and tired again, needing lots of breaks and lying down often. So, this is why I always champion staying home when contagious, because people like me on chemotherapy and people like L with damaged respiratory systems and weak immune systems are able to leave the house.

Here are photos of life in general since my October 30 Day Art Challenge. I have not included any Christmas celebration photos, so that I can make a Christmas fun post here!

Banana Slug

We made a bird feeder.
This squirrel was our main beneficiary of said bird feeder. He did not even scare off. We did get some birds too.
Playing games with his cousin and aunt
Playing games with his cousin
This is a camera L built so that he could take pictures with me. So sweet!

A bird I have never seen in our back yard. I ID'd it as a Northern Flicker (a type of woodpecker). It's pretty.
L knows many computer components. He is looking at a damaged hard drive here. I think he is destined to be an engineer.
Winter Maple

Sunday, November 29, 2015

14 Ways to Raise a Reader

** Unfortunately I wrote this blog once already and it apparently deleted itself, of which I discovered later, leaving an unhappy length between posts * 

As a parent you often wonder if you are doing it right, making the right decisions.  Parenting is just difficult.  There is one thing though that I'm pretty confident we have done right in our house- reading.  Reading has always been a priority in our house, and our son has grown tremendously from it.  He was late to talk and I attribute his learning to talk to homemade books.  Now at three and a half years old, despite other developmental delays, he is learning to read and write a little on his own.  So here are 14 tips on how you might raise a reader in your own home.

Reading in the NICU, which I did everyday (this is just after his birth)
1. Start early- I began reading to our son in my belly. Once he was born, I read to him everyday in the NICU and have read to him everyday since.

Reading at bedtime
2. Make reading a routine- If you incorporate reading into a routine, it becomes part of everyday. If it is a part of a daily routine, you will likely encounter less complaining and more excitement.  I suggest using their bedtime routine, but around meals or upon waking are good ones too.

3. Be persistent- During certain stages in development, or if starting out reading later in life, children may be a little resistant to reading. Before my son could move, he had to sit to read, but when he began to move independently, I could not get him to sit for even a simple board book. He simply couldn't stay still that long. I was frustrated, but I continued to read to him every day. First, he could only sit for one sentence, then one page, then one book, until now he regularly sits for five or six books.
We were in the bookstore (it may have been my birthday) and Layne went around picking up books, leafing through them, and saying "Hmm, that looks like a good one!". It had me giggling, but it's a good example of how children will follow your example. If you are interested in books, they will pick that up and likely follow.
4. Set an example- Children tend to follow what the people around them- particularly their parents- do. If you don't read for fun, they aren't likely to do so either.

5. Read aloud to the family- I have always read aloud. I have read aloud to my brother as a child, then my husband, then my son. It keeps the whole family occupied together with something other than TV. My favorite is that you all experience the story together. How often have you read a really good book, but have no one to talk to about it, since no one else is reading it?

Reading with sick snuggles
6. Read every time your child brings you a book- Every parent knows the exasperation of the twentieth time your child brings that book, the one you've read a million times. I think it is important to read at each request, so that they always feel encouraged about reading. So to keep you both encouraged, I have a few tips.... donate the books you can't stand reading at all and rotate books that you end up reading too often or suggest another. However, repetition is an important part of development in little children, so you will likely have to deal with it during that stage.

Laughing at the funny voices I'm using for the characters in this book
7. Use funny voices- When reading aloud to the family or children, use funny voices. This keeps children interested. Even better, it differentiates the characters' dialogue, so your audience won't be confused.
Layne's bookshelf  and reading a book on his birthday

8. Fill their bookshelf- If you don't have books around, they can't be read. I think it is a necessary investment in having children to make them their own collection of books. If you're tight on money, free books can be easily found (try the library, friends with children, community garage sales and free piles).
Reading with Pappy and reading in the car (Erin, if you're reading, you gave him both of these, and they are both among his absolute favorites! Good choices!)

9. Bring books everywhere- Books are a great way to pass the time and quietly entertain children when out of the house. Stash some in the car and bring them when going to a relative's house, doctor's appointments, and vacations. At Pappy' house, books are a lifesaver to calm our son down and have some special time between family. They are also a lifesaver during the long waits in between appointments at Children's Hospital.
Looking at my first homemade book with all of his first words
10. Make homemade books- My son was a late talker, and I worked very hard to encourage him to speak. One day, I decided, given his clear interest in books, to make him a book (using a clear binder and sheet protectors) full of his family and things I wanted him to learn to say (drink, book, dog, etc.). It worked- he spoke! I think making your own books can be helpful when your child is beginning to talk, beginning to read, or just needs a push to get interested in reading.

11. Use books to make connections- Books are the main tool in our house for teaching. Stories tend to explain abstract concepts (like honesty, loyalty, empathy, etc.) in a way that is much more accessible to children. Our son really loves making connections between what he reads in books to the real world- this was the next step (after homemade books) to teaching him to talk. When they make connections, not only does it help to solidify that idea, but it also encourages them to read more. It also teaches them that books are a wonderful place to go to learn about the world.

12. Avoid overly simple or baby talk- People often use these books for small children. I despise these books. Books are a tool for teaching, among other things, how to talk. If I do not want my child to talk in overly simple baby talk, I shouldn't be reading it to him. Besides, these are usually the ones that will drive you mad, and there are so many wonderful children's books without such language that these are not necessary.
Opening book about Planes, a gift on Christmas
Excitedly opening a few Dr. Seuss books at his 3rd birthday party 
13. Books make wonderful gifts!- Giving books as gifts places importance on them and sets the tone that they are for fun. Besides, when was the last time you walked about your house and thought "Gee, I really think my children need more toys that can be strewn across the house and  injure me in the night when I get up for a glass of water!" Children could really often use another book. Books are more likely to be kept longer too. In fact, my husband and I had several of our childhood books- even some favorites from being babies- that we still had when our son was born that we could pass down.

Reading Happy Birthday To You after his birth (and a little recovery time), which we now do every year
14. Incorporate books into traditions- I love traditions, and books are often a part of them. People often incorporate books into Christmas (The Grinch Who Stole Christmas, A Christmas Carol, Polar Express, The Night Before Christmas, The Bible). We incorporate books into most holidays. My favorite tradition is that on birthdays we read Happy Birthday To You! by Dr. Seuss, and the recipient gets to pick any book for the bookstore. There are lots of good books with which to create traditions and family memories.

Layne and I reading together, and Layne reading by himself.

I hope this has given you ideas to get your children reading! You have only one life, but through literature, you can experience the lives of many.

Tuesday, November 10, 2015

Dear Parents (Yes, All of You!)

Dear Parents,

I would like to introduce you to someone......

This is my son on his first and second day of school.  Today is his third day of school in the special education preschool.  He has an adorable smile and infectious laugh.  He is so tiny that they had to order him a smaller chair since the preschool ones were too big and not supportive enough to his weaker areas.  He has strengths, such as already learning to read and write.  He has weaknesses, such as gross motor delays and intense sensory sensitivity.

Most of all, he is a miracle.  He was only one pound at birth and on life support for quite a while.  His lungs did not work when he was born, and as a result his lungs and several places along his airway are damaged.  As a result, any illness he comes across- especially 'just' a cold- can turn into a medical emergency.  It was a difficult decision to send him to school.  What if he caught a cold?  Can I trust these folks to make sure he is safe during snack (he has to be fed differently so it doesn't go down into his lungs) or on the playground (where motor skills are a challenge)?  Our decision was not made lightly and followed many nights awake trying to decide what was best.  It is certainly the most agonizing decision we have made since he left his first hospital stay. A typical parent may worry, "Will he make friends?  Will he behave?".  In addition to those thoughts I also worry, "Will his lungs fill with fluid? Will his airway close up? If his airway does begin to close, will they recognize it in time to help him?"

I want you to know this, parents, because you may not think of this when you send your child to school or to church or any other place my son (and others with severe medical issues) may be.  I understand that it is an inconvenience to have to stay home from work or miss out on other activities, but I am begging you to think of the other children your child may come across who were not blessed with health or an amazing immune system.  What may be an annoying runny nose to your child could put mine in the hospital.

I have experienced every parent's worst nightmare- watching my child breathe through tubes and machines and waking up in the middle of the night with my child unable to breathe, rushing them to the ER and doctors swarming over him to open his airway back up- several times.  In other children, this same illness would have been just a mild runny nose and cough.  I know that you may not fully understand the feeling of watching your child kept alive solely by machines, and I hope you never do, but I hope that you can understand how it could feel to fear for your child.

I know that most parents simply don't think about sending their children out into the world sick, because they have not seen or experienced being around these fragile children.  So I would like to put a face and a story to these medically fragile children and to think about them before sending your children out the door.

Edit:  My son has gone back to homeschool after just one month of public school.  Long story short, we no longer felt confident in his health and safety while at his school, and is pulmonologist agreed.

I would like to clarify a few things though after this story has gotten quite a bit of attention.  This article is only referring to sending your children out when you are aware that they are ill and only contagious illness (not allergies, etc.).  Also, this article does not only refer to thinking about keeping your children home from school, but from keeping them from going out to things like Sunday school, children's museum, community classes etc. in general.  People often say that children will get less sick if exposed to germs more often.  Well for the majority of kids that may be true, but it is not true for all children.  Some children have genetic or biochemical reasons they cannot develop an immune system.  Our son in particular does have a sensitive immune system, but his immune system is not the problem- his lungs are.  His entire respiratory system from top to bottom works poorly.  So his immune system can fight off the illness, but his respiratory system cannot handle the symptoms.  Several areas are damaged and simply close up (or other issues) from cold symptoms, which stops his breathing and may or may not open back up without emergency help.  So even if his immune system gets more used to getting sick, it doesn't matter, because his lungs cannot be repaired.  

I have been asked often why we don't just homeschool.  Up until this point we had and we have since returned to homeschooling.  Our son and I work very well together in terms of academic learning.  He knows much of what children learn in kindergarten.  The reason why we decided to try public school is that in addition to serious medical illness our son also has autism and developmental delays.  Public school offers therapy services and equipment that are not always available or have long waitlists in the community.  Our primary reason to try public school was to give him opportunities to interact with other children in a semi-controlled environment.  We had tried to give him these opportunities outside of school- Sunday school, museums, libraries, community classes and play areas- and found that children attend these sick often as well.  He would often get quite sick after attending these as well.  So when in a new city where we don't know anyone and have no opportunities to meet friends, he often goes many weeks without interacting with another child.  I don't think that any child should have to go weeks without seeing another child outside of Children's Hospital.  I think the reasonable solution is to keep sick children home.  That way everyone can have the opportunity to grow up as safe, healthy, well developed, and happy as possible.

I hope that these edits help to explain things that may not be apparent in the original article or to others who have not had children in this situation.

Monday, November 2, 2015

30 Day Art Challenge 2015

Back in 2012, I did a 30 Day Art Challenge in which I made 30 acrylic paintings in 30 days.  I made these paintings with my tiny baby boy strapped to my chest in a carrier or sling.  These 30 Paintings were presented at an exhibit in Seattle for a short period of time.  One actually sold, which is surprising since they were a little hurried being a new mom only a couple months out of a long NICU stay and working full time too!  
Anyways, I decided to do another 30 Day Art Challenge (without the intention of putting them in an exhibit), but this time with photography.  Some days have several photographs.  So enjoy!

Day 1

Day 2

Day 3a

Day 3b

Day 4

Day 5a

Day 5b

Day 6 (Moth eye)

Day 7

Day 8

Day 9

Day 10

Day 11a

Day 11b

Day 11c

Day 13a

Day 13b

Day 14

Day 16

Day 17 (I had a bit of trouble working with the light here. It was nearly dark)

Day 18 original

Day 18 (I decided I liked this one better, maybe, after the fact)

Day 19a

Day 19b

Day 19c

Day 19d

Day 20 (Layne painted this mini pumpkin)

Day 22 (Some kind of tiny eggs on the grass in our yard. After doing some research they could be a lot of things. It is hard to see here, but these are actually bright purple!)

Day 24a

Day 24b

Day 24c

Day 24d

Day 24e

Day 25a (**These are extremely poisonous, do not eat)

Day 25b (**These are extremely poisonous, do not eat)

Day 26 original (I take at least 15 medications each day. Here is a portion of them)

Day 26 (I thought it looked better in black & white)

Day 27

Day 28a (An analog fuel pump... that works! We use this down the street.)

Day 28b (A stink bug I think)

Day 28c (This possible stink bug was quite nice and didn't stink me)

Day 29a

Day 29b

Day 29c

Day 29d

Day 30 (This is not a photographic work of art, but marks a special moment. My son has always had global delays {meaning several different delays}, and this is his first time writing.  He got my attention to show me that he wrote "15", then "l", then attempted "2", but I bumped him. He has always loved books, which is working in his favor, since he is already starting to read and write at only 3 years old, despite all of those delays.  I am a very proud Mama!)

Day 31 (Little Darth Vader for Halloween.  He is intensely obsessed with robots, so he prefers Darth over the Jedis ha)

So there you have it.... 30 Days of Art