Showing posts with label horner's syndrome. Show all posts
Showing posts with label horner's syndrome. Show all posts

Monday, August 19, 2013

Please allow me to explain (or a birthday and a hair cut)

happy birthday mama IMG_5207 happy birthday mama IMG_5210 save the sharks! IMG_5255 birthday flowers (not doing so good!) birthday mug (and multnomah shawl on the needles) Photo for Mackenzie (see - I am still slowly working on my Multnomah Falls!) IMG_5150 IMG_5100 at our dear friend's home IMG_5081 zip line IMG_5131 IMG_5161 i butchered his hair hair cut

My birthday was last week. K made sure no one forgot about it in the midst of moving madness (which I am thankful for). I woke up and went running (my favorite way to start the day) and then came home to the scene you see in the first five photos. I swear the girls get even more excited for other people's birthday than they do their own. They all decorated a box that held a new knitting sheep mug for me (I missed the one that Kevin accidentally broke). We are not big on presents so I was quite surprised about that! We even enjoyed a vegan cake (picked up from Whole Foods).
The girls asked me if I liked my gifts. I told them that I did, indeed, but that the best gift of all is my children. There is truly no greater gift or blessing.

We also celebrated a sweet friend's birthday and had the pleasure of wonderful company, along with some lovable chickens. We noticed that K is truly a farm girl at heart and needs some chickens of her own, even if we don't eat eggs. Maybe some rescued chickens? Much to think about for Idaho!

Did you notice something different about Little L in the photos above? Please allow me to explain my actions. Little L's hair was getting in his eyes all the time. I figured it would grow past that stage soon enough and then no longer be an issue. But then his yearly specialist appointment came (for his Horner's Syndrome) and Kevin mentioned that we should figure out a way to keep the hair out of his eyes because it was probably interfering with strengthening his eyelid affected by the Horner's Syndrome. I hadn't thought of that before. My instant reaction was to cut his hair in the front. Of course, my little guy wiggled like crazy resulting in one really short section. That lead me to try and even it out and before I knew it, he had (uneven) bangs. It's not so bad when they are pushed to the side but oh so obvious when just hanging in his face. I have always trimmed my girls hair without any issues but boy hair is quite different!

Oh and by the way, his appointment went really well! The doctor said Little L's eye is doing wonderfully and that he thinks he might not even need surgery when he is older (more prayers to St. Lucia). He also gave us the info for the specialist in Idaho so we can continue his appointments and treatment, if need be, once we have moved.

p.s -  I encourage you to go check out Cythia's recent post at Cottage 1945. She could really use each and every one of us to help out a young mom recently diagnosed with a life threatening illness. Cynthia created two handmade afghans to auction off and all of the proceeds from the sale of these blankets will go directly to the young mom to help with her medical expenses. Helping those in need is one of the most amazing things about the blogging community.  We can each do one small thing to make a huge impact.

p.p.s -  I posted the winner to the Mamma4earth giveaway. Go check it out!
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Monday, September 12, 2011

Computers, Horner's Syndrome & Smoking Dogs (?), OH MY!

Let me start out by saying a big fat thank you to all of you for your responses and support in our tv-free living decision. I was still oh so anxious I would upset anyone after I hit that publish button, but phew, I made it! Thank you. I loved reading all of your stories and journeys on your own media decisions. I am so glad you shared them.

I agree with what many of you were saying about the computer being a big issue, too. I have such a love/dislike issue with the internet. Boy, can I get sucked into this thing as well, and I do need to watch myself. Thanks to our computer crashing last year, having to cancel internet, only using Kevin's work computer along with his crazy work hours, I barely spend time online anymore (see there was a silver lining, after all!). I think that this blog is a bit deceiving when it comes to the time I spend online, especially now that I am posting more than I used to. Ironically enough, I am online less now, yet I am posting more. Yeah, you do the math on that one, I have no clue how I am doing that, either!

I am on the computer about one hour a night. Just enough time to do my post and if I am lucky, also check e-mail and ravelry. If I am really lucky I'll even have time to respond to an e-mail or two. This scenario can be frustrating at times... ok quite often, but it really is a blessing in disguise. When we had a computer in our home all the time, I would find myself sneaking away quite often to check my e-mail or visit web pages throughout the day. I would then wonder how my day flew by so fast without getting anything accomplished. I do feel so far behind with everything online because of this, too, so it has it's good and bad points. Take this weekend for example. Kevin and Nara were out all night Thursday for SAR, then Friday he was at work until the early hours of Saturday, and then he left for work that morning before we even woke up not returning until midnight Saturday night. Not only have we not seen Kevin in days but since he has his computer, I haven't been able to get online since Friday morning - which explains why I am horribly behind in my response to comments from last week... ahem.

Anyways, I think that's enough rambling about the computer madness. Just know I feel your pain on that issue. Balance can be so hard to find sometimes, don't you think?

I never did update all of you on Baby L's Horner's Syndrome, did I?





I wish I had a lot to say on it but our visit with the specialist was quite uneventful. Actually the visit to the farmers market with our dog Beowulf before hand was almost more enlightening.



The doctor started out by checking Baby L's pupils and measuring them. His pupils are different sizes due to the Horner's syndrome but I am not sure why he has to keep measuring and checking them. He didn't say much about the measurements but did mention that his droopy lid looked better since the last time he saw him. Then he was pretty much done. He said he wanted to see him every 6 months to make sure his droopy lid isn't causing any issues with his vision but that's about it. He asked if we had any questions and it took us a bit to get them out there. I guess we were expecting more, and even maybe thinking that he would tell us a different prognosis or that somehow the Horner's had gone away. Foolish, wishful thinking, huh?



You can see his eye difference a bit in these pictures. It's not always visible but then sometimes it really stands out.



The doctor said that Baby L will always have Horner's - there is no cure for that, and that he will always have different sized pupils but that his eyelid made or may not get better. We just have to wait and see. Those aesthetic things didn't really matter to me, though. I just wanted to hear that my baby was going to be ok. I did ask him, again, about the cause of Baby L's Horner's and if any possible future children of ours could have it. I already knew the answer but I just needed that reassurance from him, once more, telling me it was not my fault.



So with all of that out there now, Baby L is growing like crazy. Much too fast for this Mama. His little personality is really starting to come out now, and what a cute one it is! Oh, and his giggles they are such sweet music to my ears. He is so very ticklish, unlike his sisters, so I get to hear them quite often.





I love to watch the concentration in his little face. Like in these pics when he was trying so hard to get my water bottle over to him.



Oh, my sweet little mellow guy. I just hope I can always be there for him and be strong enough to help him through this life.

And now for something completely random...



In preparation of K's upcoming birthday Kevin and I were planning our yearly apple picking extravaganza. We somehow or other completely forgot the name of the organic U-pick farm we went to last year. We searched through my photos from last September in the hopes that I took a picture of the farm's name. I didn't that time (of course!), but we figured it all out and have plans for picking soon. As I was looking through all of the photos I took last September, I came across this picture of C. I fell in love with her earth loving hands and chubby cheeks all over again.
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Thursday, August 18, 2011

Sentimental



Baby L has outgrown his sweet moses basket - not by weight or height, by any means, but due to his wiggly rolling behavior. We mostly used it for taking pictures of him, as a matter of fact, I do believe the cats got more use out of it than he did. Yet there is just something so sentimental about it. I enjoy walking past and seeing it there looking all snug and warm and cozy, waiting for a baby to be placed in it.



Many thoughts raced through my mind today as I decided it was time to pack it away - thoughts about my family, our lives and how everything feels. When I think back to my life before my children it just feels so empty now, they really make life complete for me.



Kevin tells me every now and then how he thinks about the day our home is empty and it's just the two of us. I do understand where he is coming from, we haven't had time alone together in years and I mean real time together - not doing housework, grooming the dogs or making lists for the next day - just the two of us, one on one, being able to talk without interruptions.
I, too, sometimes miss our time, yet I also love our time together as a family almost even more. I see my husband in a different way since we had little ones but it's such a deeper way, filled with even more love.



The thought of an empty home to me is scary and well, just so empty feeling.
I can not fathom no longer hearing sweet little voices singing, baby giggles, little footsteps down the hall and yes, even dealing with those messes, tantrums and interruptions (like I just had a few minutes ago as I was typing this - K woke up and needed a band aid shrug I think she dreamt she got a cut or something...) Even those moments when I am pulling my hair out (oh boy, at least once a day!) and begging Kevin to take the little ones even just for a half hour so I can have some time alone and regroup - I would take those any day over being in a home with out children.



I started thinking, too, about how our family may grow. I have always wanted a big family - will that happen for us? I guess that is not really in our hands and we will just have to wait and see.
So much to think about from just putting away a simple basket. You would think I had too much free time!

I forgot to add that Baby L has his next specialist appointment this weekend for his Horner's Syndrome. This should be a simple, non-invasive appointment but if you could think some good thoughts or say a little prayer for him we would truly appreciate it.

Stay tuned for a giveaway from one of my talented sponsors tomorrow!
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Tuesday, June 14, 2011

Little Doctors



Ever since little L'sMRI back in April, doctor play has been quite big in this house. There are even some mornings when we all have just woken up and the doctor kit is already out and waiting by the feet of two messy haired girls. Luckily, little L doesn't mind his sisters constant hovering and tickling one bit.



It makes me wonder, though. Would either of the girls be inspired to become doctors due to their little brother's condition? We have never asked them what they want to be when they grow up, it's such a big question for children so small, but still I wonder. K, especially is just so empathetic, thoughtful and caring I could see her doing something like that. I have also envisioned her as some kind of religious figure, too. She is extremely spiritual, always has been. When she was about 9 months old she had her grain ceremony which is a ceremony where she is given her first grains. It is also a ceremony to see which path in life she would take : the spiritual path or the materialistic path. Shiny coins were placed before her on one side and bibles on another side, then we let her go to see which she would crawl to. She went straight to the bibles. I think I may have mentioned her connection to angels once or twice, too...

ETA: I think my term 'materialistic' seems to not come off the right way. I didn't mean it to sound like materialistic as in only caring about possessions, money, etc but as in being very attached to the body and this world while the opposite being spiritual meaning not attached to the body. I hope that makes better sense! I just wouldn't want anyone to take what I said the wrong way!

Anyways, I am off track now...



I wanted to take a minute to thank all of you for your e-mails asking about little L and wanting updates. Even though that MRI was way back in April and we got the results, we still have not moved forward. Part of that is my fault. I have been fearing the next appointment - In what ways will they prod my baby this time? Will I be able to handle whatever results they may find? Would I be able to handle them not finding any results, again? Do I really have to continue down this road?
With all of that in my mind, I haven't picked up the phone to make that next appointment. It just seems to scary for me. I know that sounds absolutely absurd, believe me, and I know I can handle it, but it is still a bit rough. Thankfully, Kevin picked up on my fear and has been trying to get the next appointment set up. If you have ever had to see a specialist you may know how that goes, appointments are usually months out.

So here we sit, and wait. Little L is hitting every milestone and doing beautifully. He has been opening his one eye more and more and does not appear to have any vision issues. He is growing, cooing, rolling all over the place and giggling like crazy, and my goodness is he ticklish! He is such a laid back, happy baby and he brings so much joy into our lives.
I do promise to update you all when we take that next step forward and go to that appointment. I wish I could take you all with me to hold my hand but just knowing that you are all here with me will help me out in so many ways. Thank you.


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Wednesday, April 20, 2011

Reasons to Celebrate

Two glorious reasons to celebrate in no particular order (because they are both equally beautiful).

C is now three!


Birthday table
On Monday we honored C's third birthday with a nice, quiet family celebration.
She choose the meals and the plans. Such a simple, perfect day!




Birthday morning in her pjs
She chose to open her presents right after her birthday muffins (Oatmeal-carrot muffins from the Waldorf Kindergarten Snack Book). We have decided to help out the earth, save money and to make things even simpler we would start 'wrapping' our presents in the girls' play silks. They look so pretty wrapped this way and C has a much easier time opening them.


Mopsy (rav notes here)
This year I knit her a bunny out of some super soft mohair (can I just say how hard it is to photograph white mohair?! This shot was the best I could do). She became obsessed with bunnies after meeting out neighbors angora bunny named Mopsy a week before L was born. We are very lucky to have one of our school's grade teachers as our neighbors (he may end up being K's 1-8 teacher, too!)... but I'll go more into this amazing family in another post. For her birthday sweater, I knit her the Tiny Tea Leaves cardigan (rav notes here). She wore it all day Monday (as you'll see in the rest of these pictures) and Tuesday, so I think she likes it.


A new view!
Since she turned 3 and her long legs were starting to get a bit too scrunched, we turned her car seat from rear facing to forward facing (It's just a personal choice of ours to keep our little ones rear facing as long as possible). She rode in it this way for the first time after she opened her presents. We took a short drive to K's teacher's house to pick up some goodies.



We incorporated her birthday into our Monday/Baking day rhythm by making her birthday cake when we got back home. She decided on the honey cake (recipe, again, from the Waldorf Kindergarten Snack Book). We chose to top it with fresh strawberries as well as strawberries between the layers.


The only pic I got of her in her crown



Yum!
After our cake, she wanted to go for a family walk, although to her a family walk means Daddy walks and she rides on his back...



That is until we get to the duck pond, then she wants down to feed the ducks.






Getting those silly rocks out of her boot

Yipeee!!


After that it was time for dinner. C requested homemade broccoli soup with rosemary baguette (a new fav recipe from the Bob's Red Mill Baking Book). We made dinner and told her rainbow bridge story while lighting her birthday ring candles. Such a peaceful and loving way to end her special day.



Phew what a fun day!

Ok, I am really making this a long post but...

L's MRI results came back


All partied out

The doctor called us and of course I didn't get to the phone in time, in my typical fashion, but thankfully he left the results on my voicemail. L's MRI was NORMAL!! So no tumor!!! But now that that's ruled out as a cause, we still need to figure it all out. I am not sure if more testing is involved or not. I am hoping to get in touch with the doctor this week to see where we go from here. Thank you all for your prayers!!

Ok, I'll end this lengthy post now, but as you can see we had so much to be joyous for. Sending you all our love and warm wishes!
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