Sunday, November 17, 2013

What a week

I don't even know where to begin with how this week went and not sure I even want to recap it. But basically the run down is this (in as short and as sweet as possible cuz really this week SUCKED).  

Carter started Occupational therapy twice a week for his "lack of eating" problem. He basically eats sweet tasting crackers, milk and bread. That's his main sustenance of which there are hardly any good calories or good fat in there, and he refuses to take vitamins. Here's hoping OT can help. I know it will be a long road and I know things can be way worse, so I'm trying to remain hopeful. The Occupational therapist wants me to have a multitude of tests run on him. All of which I did with Ashlyn when she was a "non eater" and none of them came up with anything. So I'm hesitant but will probably follow through solely for the "just incase". 

On Wednesday, Ashlyn broke her glasses. Just three weeks shy of being eligible for a new pair through our insurance. They snapped right in half because she had left them on the floor and then accidentally leaned back on them. I couldn't even get upset at her, she so upset already. So we super glued those puppies and so far so good. They just have to hold together long enough to get a new pair. She's planning on picking out an aqua blue this time. Her current favorite color. 

Also on tap for Ashlyn, and by far the most miserable part of my week and hers, (this part deserves a long explanation) was her skin biopsy on her head down at Children's Hospital in LA. 
So, let's back up. We all know Ashlyn has had thin hair since birth. I have gone to many dermatologists and allergists trying to find an answer and always came up empty handed. The last one told me she had a scarring alopecia and there was nothing I could do about it and to go home and learn to do a "comb over". Stupid doctor. While it's true she has a scarring alopecia and yes I can't do anything about it really, it was irritating to be told to do a "comb over" on my then 8 year old daughter. 

Anyway, fast forward to 6 weeks ago and as I was doing Ashlyn's hair one morning, I noticed she had some weird kind of scaling and scabbing on her head. Almost like cradle cap. It got worse over the next week so I took her to her pediatrician who had no idea what it was. She referred me to a specialist. I called and after weeks of back and forth trying to get a hold of anyone and get her registered at Children's Hospital (which is a huge ordeal btw), I was told that unless she was an urgent case, she wouldn't be seen until March or April. I asked if I could send pictures of her head and the lady told me yes and that she would get back to me sometime the next week. Well, the next day I heard from her. She told me she got the pictures and had made an appt with the head doctor for that afternoon (apparently the dr is so busy even the front desk lady has to make appts) and that she wanted to get Ashlyn in that Friday (which was two days ago). SO of course my head is spinning thinking the worse but trying not to freak out. Side note: It is VERY hard to not freak out when it involves your own child. The next two days I was in touch with the front desk gal, who's name is Erica, on a pretty regular basis. She said she blocked out an hour for Ashlyn with the doctor first thing on Friday morning and was actually going to open the office an hour early for her to be able to come in (yes, more freaking out was involved). She told me to be prepared for a skin biopsy (more freaking out on my part) and to be ready for that. SO needless to say I didn't sleep much. Paul gave Ashlyn a blessing the night before and I texted family and friends to ask for their prayers for us. Friday morning came VERY early as we had to be at Children's hospital at 7:15 am. It is probably one of the first times in my life I remember ever asking for people to pray for me and I can honestly say that it made all the difference. I literally felt the calming influence of the spirit with me the entire time and was able to hold it together and be a good support for my sweet Ashlyn. She was definitely nervous and her stomach was very upset, but she did AMAZING considering they gave her three shots in her head and then took a cookie cutter type tool to it to extract 4 mm deep of skin. They then stitched it back up with two stitches and told us the results would be ready for us when we came back in two weeks. So at this point, we know very little about what is going on with her scalp. The doctor suspects it is some kind of auto immune skin disease, possibly a skin lupus or something else I couldn't pronounce if I tried. In the meantime, we are just waiting and grateful that it isn't (hopefully) something worse or life threatening. What ever she has may not be curable but is most likely treatable and I will deal with that over the alternative. 

Besides the multitude of doctor visits and calls this week, I found out on Tuesday night that one of my greatest friends all through college (Ricks and BYU…we even wrote on his mission….as friends only I might add) had left the church. Not only that, but left because he felt he had been lied to his whole life about the history of the church and Joseph Smith. I know I shouldn't be terribly affected by this news, but it has made me very sad. I don't even talk to him regularly except occasionally through FB, but it is still just really upsetting to me to see someone fall away from the church when the church is such a HUGE part of my life. I know he had a great testimony and was a great missionary. Not that I am judging him. I don't know his life and all what he has gone through…just makes me sad that it has happened. 

Also on Wednesday, Brandon came home crying from being called "big brain" yet again. Not by the original kid that started calling him it, but by another kid….a "friend" of his no less, that I'm sure heard it from this first punk kid who called him that. He was SO upset. He went up to his room and threw legos all around. Wouldn't talk to me for hours and even drew a picture of himself with a line through his head and wrote NO on it. Broke my heart. I didn't know what to do. I don't understand boys who don't like to talk through problems. Paul told me to just leave him alone for a while and he would calm down. He did. He eventually came downstairs and joined the rest of us. I feel sad for him. I told Leah to watch out for him during valet cuz that's when this boy called him the mean name. Stupid kids. Why do they have to be so mean to each other?

SO that's been my week is a "long" condensed nutshell. More going on, but I'll have to blog about that later. That's the meat of it for now and I'm tired from just typing it all. Over all though, I know that I have a tremendous amount of blessings and am very grateful for the gifts in my life. I have wonderful friends and family who stepped in for support the moment I needed it, even if I was a wreck of a person. And, I have an amazing husband who is by my side through everything. What more could I ask for?

Here's a few pictures. I didn't take many this week.

Ashlyn's poor glasses.


Being prepped for the biopsy.


Oh…this is actually an awesome picture. My sweet friend brought me cinnabons on by far my worst night of the week. They served us well and was what we had for dinner that night because I certainly didn't cook that night. They were delicious.


Thankfully, the week didn't end bad though. On Saturday I got to go to the Temple with the youth in our ward to do baptisms for the dead. I unfortunately didn't take any pictures, but I had the best time. It was just so nice to be in the Temple with the wonderful youth. We have some amazing young women and young men and I'm so glad to get to work with them. Plus being in the Temple is always a happy place to be. 

Oh and I should add that the rest of Friday, after Ashlyn's doctor appt, was actually really fun. I let her stay home from school the rest of the day. She definitely deserved the break. We went to breakfast after her appt and then to the store to do some Christmas shopping. She bought a gift for everyone in her family and for two of her friends with her own money. I was very proud of her. She sure is a sweet little girl and I just adore her. 


8 comments:

Phillips Family said...

ah man amber...even though i knew all this already you have me bawling. I am SO sorry. that is not a fun week at all. And actually, I didn't know that stuff about Brandon, that is so infuriating. Kids can be so cruel. Hang in there. I sure love you and your family! HUGS!

Phillips Family said...

And btw- that Ashlyn is amazing! I just love and adore her so much. She's definitely an angel here on earth!

hannah said...

Oh, Amber, I'm so sorry! What a rough week. Feels like you got it from all sides! Hang in there and will be praying for sweet Ashlyn. and Brandon too.
P.S. Thank you for your comment on my blog. Even though it is all rearview mirror, its somehow still comforting to read comments.

Beth said...

Girl!! I knew some of this but not all and I hope you know that I am here for you no matter what. Watch your kids, bring you anything you need. You are one of the strongest people I know and one of the most wonderful mothers. These kids are so lucky to have you!! I hope that you have some YOU time this week.

Jenn said...

I didn't know any of this-- what the heck? Sorry for all of it! Love your Ashlyn-- she will be in my thoughts and prayers! And mr. Brandon too! Oh, and you! :)

Camille said...

I am so sorry Amber!!! That IS a rough week!! You guys will be in my prayers! I hope this week is better for you! HUGS!!!

RachelAA said...

What a week!! I'm sure it was exhausting to recap it all but go to do in the long run. You're an amazing mother, an amazing woman, an amazing leader in the Gospel. I hope you get answers soon and those bullies knock it off REAL QUICK! xoxo

Mindy said...

Dang. My life seems like a CAKE WALK now! Tell Ashlyn I'm proud of her for keeping her cool in the hospital. I totally would have come unglued (even now, I'm such a wuss) and that we'll be praying for her!