Neurology

My frustrations in getting an appointment with our favorite neurologist have been significant. I've been calling weekly since October 1st and daily since December 1st. I really don't mind waiting several months to get in... that is to be expected but they weren't even able to schedule us. Aargh! So... when they called last week with an opening for the day after Christmas, I jumped at the chance.

The appointment was a follow-up to discuss medications and such. It's been over a year... The meds are working great and his blood levels are within a comfortable range. While Crew's developmental progress is significantly delayed, he does continue to progress. His head size (he is finally wearing a 6 - 12 month hat) is clearly a reflection of the Microcephaly. I hate that term because it basically means small head, small brain. The brain/head continues to grow but it will never "catch up". Crew's head size isn't even on the charts... not even close.

All in all, the appointment went well and each boy came home with an adorable Christmas Moose:) I love the Childrens Hospital here.

Merry Christmas

The kids are finally asleep. Presents are wrapped and under the tree. The walk and driveway are shoveled... it's a WHITE Christmas afterall!

May you all feel the peace, joy, and love of our Savior, Jesus Christ.

Merry Christmas from our family to yours:)

Meeting Santa

Don't ask me why this three year old little boy hasn't met Santa before now. Come to think of it we haven't even really talked to him about it. This is the first year Crew will be more interested in his new toys than the wrapping paper and bows. Well... at least that is what we are hoping for;)

Santa made a visit to the preschool yesterday. They said Crew was fine sitting on Santa's lap but he wouldn't stop staring at Santa. Well, I can't really blame the kid.

Social Imitation

We had our annual family circus last sunday. Getting a good Christmas shot is always interesting. I think the big boys were trying too hard and Crew is never looking in the right direction. In an effort to break things up and kinda shake it off, I suggested everybody "cough in their sleeves". I don't know why.... I guess its funny to me since Crew recently started imitating behavior. He started the cough in your sleeve thing after seeing his therapist do it. He also likes to pretend to scratch his nose.

Tonight before our pre-bedtime "shooting hoops" ritual, I could tell Crew wanted to play ball so I signed "ball" but didn't say anything (usually I combine sign and speech) and immediately Crew turned his head toward the toybox and reached for the ball. Okay, its simple proof that he totally "gets it"!

And "NO" we still don't have a Christmas card picture.

All Smiles

Making the best of the freezing cold weather here. Tonight I made mint brownies... brownie mix with melted Andes mints on top. Yumm! Chocolate makes everything okay, at least that has been my experience;)

Only 376 More Miles

Two more days.... two more days, only two more days!

Today was good! I think we only had tears once during therapy. Lots of whining which is nothing after last Mondays meltdown. Seriously, I've never seen anything like it. Crew insisted we go outside so we took him out to the parking lot in his Neurosuit and walker. Whoa, talk about motivation. He was running around like his old happy self but we were freezing. Literally, it was like 15 degrees so we went back inside and he freaked out. It probably took ten minutes to get him calmed down. Needless to say we learned our lesson... we will be staying indoors for the last two days.

Tressa (our favorite PT) is going with us in the morning. It will be fun to have some company and see what she has to say about it all.

Only two more days:)

Keeping in Touch

I'm not sure how or when it happened but the other day I realized how very rarely anyone calls me to simply talk about nothing in particular. You know, doesn't every woman need those friendships. Thankfully I do have my sisters who will patiently endure my prolonged ramblings. And I have my good neighbors that are always willing to lend an ear. Without a doubt I know that its likely my fault. I've never been good at instigating "girlfriend outings" or phoning regularly. Ironically, friendships are near the top of my list of priorities but not before God and Family.

FAMILY.

I once thought that after my kids passed toddlerhood I would finally have some time to myself. WRONG. Now we have piano, sports, homework...

Now we have therapy, doctor visits, insurance claims...

Here is who I've talked to on the phone today:
1. Our Durable Medical Supplier to check on walker hip guides and remind him to pick up loaner wheelchair that is parked in garage thus making our two car garage into a one car garage.
2. Our Primary Insurance case worker to inquire about Hyperbaric Oxygen Therapy.
3. Our Secondary Insurance case worker to inquire about mileage reimbursement.
4. My SIL to plan Family Christmas Party
5. The Cub Scout Co-teacher to discuss weekly meeting.
6. My babysitter to coordinate some time where I can catch up at work.
7. My 5 year old niece who kindly answered the phone while her mom was taking a shower. LOL
8. Dear Husband about this and that:)
9. Pediatric Neurology- in an attempt to get an appointment. (this is a whole other post)
10. My sisters answering machine.- I'm thinking sister is busier than I am.... Yes, it's possible!

My little buddy

We did it! We've completed the first 40 hours of Intensive Therapy. This week has been a hard one. I'm not sure what I want to say about it at this point. Maybe I'll be able to talk about it later. But for now, Crew and I will be enjoying a carefree... therapy free weekend!

Christmas in the Car

The title of the last post has been driving me crazy so I thought I'd quickly pop in. Thank you to all of you for the supportive thoughts and comments. It means a lot to me to know that we have our own little cheering section. The therapy is going a lot better. We had minimal tears today. I can already see that Crew is stronger and his tall kneel is looking better. I think his trunk support is improving too:) He really is doing well in the cages but doesn't really like his suit. He knows when the suit goes on he is going to have to work and work. I will have to take notes and share with you how his four hour daily therapy is broken down. Also, I have more pictures to post later when I'm not in such a rush.

I've had oodles of time to think about this Christmas season as I've been traveling back and forth. Also, I've enjoyed reading some of your Christmas memories, your traditions, expectations. Yesterday, in church we talked about what gift we might give our Savior this holiday season. Many suggestions were given and I know what it is I need to do to show him my love and appreciation. I have these internal struggles to let go of past hurts and to rise above. Oh, and it is so much easier said than done. It is my greatest desire to forgive and forget, be a little kinder... more loving, yet I continue to have these battles and there are days when I really do not like this situation I am in. However, I do know that life goes on and there really is a light at the end of the tunnel.

My oldest son keeps asking me what he can get me for Christmas and I say, "Good kids and a clean house"... (I stole that one from you Kristen). S is so tired of my answer and now he asks me what he can buy me for Christmas. Again, I tell him that he cannot buy me anything... that I just want him to treat his brothers kindly and be the best he can be.

Truly, there is nothing greater than peace and love and happiness in the home. Money cannot buy those most treasured gifts and I so I want to give of myself and overcome these obstacles.

In an odd sort of way, I'm thankful for the many hours I've spent in the car with Christmas carols playing. Crew and I have had some quality time together singing and munching on cheetos. I've also been thrilled to hear some new words escape his lips and watch as Crew develops his own method of communication with me. Oh, and I've learned that when I see his arms waving in my rearview mirror it means he wants another cheeto:) Love that boy!