"Bubbies"

The sweetest word you ever did hear! David says, "bubbies". I will give you a guess on what these are...

Bubbles!

D is really starting to talk, it is so fun. We had a bubble bath and that was the word that came out. I love it! He even has a two word phrase, "all clean" after washing hands. Latest words, include baby, doggie, cracker, ice cream (yep), hotdog, color, "cado" for avocado... still can't get him to say milk. Hmm...

I realized this week that I must not be super clear on David's development because yet again I had a visitor (a sweet family friend) who was surprised by how well he is doing. So, I thought I would try to paint a better picture.

He walks along furniture (which is what the word "cruising" means), and reaches across to get to the next thing. Sometimes unsuccessfully. He pulls up to furniture. He crawls on ALL fours and reciprocal too!!!! This is an amazing thing, I really didn't think it would happen, I mean his army crawl was doing the job. Getting from A to B was easy for him. But God has bigger and better plans that I can imagine. He is curious and plays with all sorts of toys. He can smash the baseball on the mini teeball toy, I have to watch putting the ball back on before he hits the next homerun! He is a boy and loves to throw toys! ...er and rocks.

He loves to sit with sissy and "color", which is short lived but he enjoys throwing them on the floor... Anna tries to redirect him and usually ends in a yelling match, ha! She is such an artist, she is drawing houses, people, flowers, clouds, and stars! That crazy girl can write seven words correctly from memory, including her whole name. She loves to read books and sing and dance (especially to songs from the Nutcracker). I love her sweet voice, although she would rather me sing alone. Her favorite song at bedtime is Oh Holy Night (yes I am STILL singing it from November). I need to come up with a new song that she will love, any suggestions??

Back to D, the boy loves to SING! It is the sweetest thing and no you cannot understand the words, maybe the first two or so. But he sings all day long... during meals, playing, sometimes at night. I love it and hope he doesn't stop anytime soon. :)

What else? So much, honestly to me he seems normal. He doesn't walk and he doesn't have two word phrases, but otherwise he knows what is going on and when I tell him to do something or not to, he knows. It's hard to explain what it's like to deal with the diagnosis of CP and brain injury. The best I can come up with is that you don't look at things kids are not doing but you are overjoyed by what they can do. They are blessings instead of milestones, amazing feats instead of the "normal" development and progression of childhood.(I hope that didn't sound to harsh.) David is a special blessing and amazes me everyday by his sweet demeanor, growth and love.

Easter 2012

Now to him who is able to do immeasurably more

than all we ask or imagine,

according to his power that is at work within us,

to Him be glory in the church and in Christ Jesus

throughout all generations, for ever and ever! Amen.

Ephesians 3:20-21

And we're cruisin'

What a busy little bee! I had to post because David is growing and moving and doing so much, I wanted to take a minute and write it down.

As you can see from the title, David is officially cruising! He started with the kitchen and now has moved to the coffee table (which is not the best cruising material, by the way). I can tell he is having a blast, too. So crazy to think that walking is coming so close, as much as I want him to, I have to keep my eye on him so much more. We have had a lot of crashing... although I have to say he is doing better with that. But I really don't like it, poor guy. It just makes making meals and tidying the house a bit more challenging.

David is also saying some more words, my favorite is "hug." He is so sweet and loving. He does tons of repeating. Also, he says "eat" about a million times when I tell him food is ready. Although, usually he is at his chair before I can even finish making it! He is eating more, but not gaining at a great speed. Keeping this on the prayer list. We are now in speech therapy and so far we are not doing so hot. I'm sure David is just trying to get to know the therapist but he has said a whole 2 words to her. And is a bit distracted during our time. If you think of it, please say a prayer Monday and Friday for him to focus and learn.

a birthday party

What a fun time we had! Thanks to all my friends who were able to join us, we had a blast! I decided to do a construction theme with a muddy cake that I found on Pinterest and loads of goodies from there also. It was a rockin' hot day in the beginning of February and the kids got to play outside too.

 Anna really wanted to help blow out the candles!

 A fun idea... but got a bit messy! I'm sure I will be finding rocks in the most odd of places...

I was wiped at the end of the day but blessed that my baby boy is growing and learning and I would do it all over again to celebrate him and his LIFE! He is doing more and saying more everyday, we are so thrilled. But more importantly thankful to God, the One whom all blessings flow.

T-W-O

As I title this post, I remember what the year of the two's brings, oh man, here we come! BUT I am a blessed mommy of an extraordinary two year old!

I wanted to think back a bit about David's life and how far we have come. As much as I block it out, I do remember those dreaded days long ago... exactly two years ago. The life-sucking words that were said, days and months of waiting and praying, a family separated, physical and emotional pain, and more. Rarely do I read what I wrote in the beginning, (I don't have to, it happened to me!) but I do remember holding back a bit about some of the details of life that were not so great. And now I wish maybe that I didn't. But maybe I thought people would realize that I was in excruciating pain at the time physically and emotionally. Did I need to say it? Who knows? Anyway I was.

I remember the first six weeks and the quarter of a mile walk I had to make, every day, after my not-so-normal C-section. That was terrible. I remember at one point weeping to Joel when we were getting on the elevator leaving the hospital one time, when I said to him, "I have no control over anything. Nothing. Not my body, my children, my emotions, nothing. I can't do this!" It was so overwhelming and I was struggling. I have teary eyes just thinking about it. If you don't know me well I am a type A personality, IN control of myself and others. :) And so on. You know the type.

Anyway, life was pretty rough as you know, for a while. I can say that the peace I felt about David and his future was amazing. And I can thank God and you for that. Lots of words were spoken about David, but in my heart I knew he was different. His eyes told me. Those sweet eyes.

I have an old and sweet friend from college that has a blog, Fuzzy Granola Life, she posted this one day and I felt like I could respond a little to that. (And by the way, she has a fascinating blog about being a mom and a doctor, you should read it!) In this post, she lists her fears of being a doctor and what makes her heart pound in the NICU. I'm glad she is so vulnerable. Unfortunately, David's history in the NICU made the list. But here is my response, we knew what the worst could be (or I did), but David was our child. Period. No amount of home care, expenses, or inconveniences would have changed our decision. I remember doctors asking us about whether we wanted to consider life saving measures a few times... Joel asked them never to ask us again, the answer was yes. Do everything you can and more. It's hard I'm sure because people don't really know what it will be like when it is time to go home, especially the lay person (or those outside of the medical field). I remember telling Joel, he may live with us forever and so on. Believe me, even with my amazing boy David, it was rough for a few months after we were home. I was out of my mind. No sleep (I mean really like 20 min, not kidding) and miles of stress. The beeping from his heart monitor would literally give me physical pain deep in my stomach when it would go off (which hello that meant his heart rate was under 60, who wouldn't have some stress!!). And sometimes this would happen while I was driving on the freeway. Not okay. But steadily, David outgrew things and conquered things. This is what I want people to hear. Life does continue and you still get to be somewhat normal.

What I really want to say to NICU doctors is, tell me the whole story from all aspects, tell me that there could be some hope, tell me the good things, it's ok! Tell them about my child and what he is like. The only doctors (in the NICU) to give us hopeful news were neurosurgeons, believe it or not. We were so confused we didn't know what to expect. No one really knows is the point, right? Except God. I remember them telling us that they knew of a girl that had the same diagnosis as David, how she unless examined extensively had no deficits. What?! Awesome, praise the Lord! I don't care how many lawsuits there are in the world, it is okay to give both sides. Tell me everything, that's what people want. Good and bad, horrifying and miraculous. FORCE the developmental doctor to visit them! They have the current research, they see these kids everyday. I remember the day that I was challenged by mine (or David's rather). We talked extensively regarding this matter, of not giving all of the information by the NICU doctors, and she was not happy. In fact, she went as far to say that they were mostly wrong. That she sees and tests these kids and the deficits are not anywhere near what I heard them say. When your world is wrapped with a precious baby and an unknown future, hope is sometimes the only thing that will hold you together.

Please don't get me wrong in this writing, the NICU doctors were vital in David's birth and survival. They were present and ready to do whatever it took, they took time to answer questions and keep me in the loop. I really did appreciate everything they did for David! And as a side note, the nurses were phenomenal as well and always gave us hope for David's future.

AND he is doing so much! He is starting to talk and mimic words, the most recent was touchdown during the Superbowl! He is eating much better, he giggles when he eats ice cream. He is still the most lovable and cuddly boy you will meet. He is starting to get feisty with his sister... most recently a bite on the toe (it would help if she didn't put her foot in his mouth). He wants to walk (and he has some new orthotics to help). He loves to play outside in the dirt and eat rocks. Ugh! He wants to be where his big sis is. He loves to slide. He is very curious and is starting to explore the toilet... And he just learned how to stick out his tongue, it's hilarious.

It has been a busy, love-filled, blessed two years to say the least. The journey continues and we can't wait to see what God has in store for our boy!

p.s. Here is a little note to D on his birthday... from the loving daddy who used to sing to his little incubator at night in the NICU.

David,

Happy Birthday!  May the God who makes the lame to walk and the blind to see bless you this year.  May He heal you, body and mind.  May you bring joy to those around you.  May your life be a witness to the greatness and goodness of our God. 

Love,

Dad

Update

Surgery was successful! The doctor was pleased with his alignment today and we headed home to Yuma. His little eyes are bloodshot :( and ironically when he looks at me with both eyes it feels wrong... I will get used to it! One little thing though, David's eye was a little red, so just to be safe we started antibiotics today (which was an ordeal itself, blah). Please pray with me that there is no infection, that would be no good at all.

Eye surgery

Just wanted to let you know that David will have eye muscle surgery on Wednesday, bright and early. Please say a prayer for us and the surgeon, it is a short and "simple" procedure to correct his crossing. I'm sure you may have noticed in his pictures or maybe if you have met him in person. But maybe you didn't, maybe you only noticed his amazing *smile* and dimple, that I love so much!

Don't forget. :) Wednesday morning. Thank you.

When I am afraid, I will put my trust in You.

 Psalm 56:3

busy, busy, busy

I can't remember all of my last post about David (too lazy to look, ha!) but I will give you an update now from about Christmas-ish. We are back in Yuma after a long absence to Washington and then to Phoenix for Christmas. We had a great time and loved the time away to kill the time Joel is gone... We even went on the Polar Express in Williams, Arizona - same train that goes to the Grand Canyon, except we went to the Northpole! The kids had a blast!

and yes we were blessed with snow, perfect snow!

David refused to ride without being at the window, the. whole. time.

Anna & Jaxson and a giant delicious cookie!

Christmas day bike ride... why not?

This last picture is at Mark and Laura's (grandparents) in December right after we went to see the Nutcracker with all of the women of the family. It was lovely as always, minus one small breakdown from the 3 year old! Oops!

So back to the David update... we went to see an amazing doctor in Phoenix, who mainly deals with pediatric rehab, about his muscle and weakness issues. Our appointment lasted 2 hours! She was very thorough and asked tons of questions, poked and prodded to come up with a plan to help mainly with David's weakness in his left hand and his tightness in his legs (he crossed them when he walks). She was very encouraging and was clearly up-to-date with the current research, which was much appreciated. I went in with a few things that I thought we should try and came out with totally different things. So here was the final plan... from her assessment she thought David was very close to walking and wanted to encourage that as much as possible... we bought some walking wings first, which if I was writing an Amazon.com review I would say they are perfect, easy to use and not a big contraption, seems like it would feel like actual walking because they still have to balance. Next, he will be fitted for bilateral AFO's (that link is an easy description) for his legs, to help with the way he stands and walks. By the way, he is a crazy man! He does some hands and knees crawling, and he loves to play sitting on his knees. But best of all (and at times worst of all) he is pulling up to everything, I mean EVERYTHING... I have to admit I am having a hard time with it during those crucial times away from him, like say making dinner. I'm not going to feel bad for worrying about this, I have hard as rock tile and his sweet little head will not smash it, if I have any say! Although, it does happen and it kills me! I try everything to stop it from happening, believe me, but even if I'm right there it happens sometimes and I just want to cry with him :( He is getting much more steady and learning that his legs and feet have to be a certain way for him to balance. He is a smart little boy.

Also, we will be getting a brace for his left arm and hand that will provide stimulation and keep it from tightening up while he is playing. Lastly, we are starting a constraint therapy for 15-30 minutes a day, using a glove-like object on the good hand and getting him to use his left hand to do things. He is actually doing pretty well with this and seems like he understands what I want him to do. Lots of praising happens and we are doing things that he loves and with special toys for that time. Basically this glove-like thing has to completely block sensory stimulation to his good hand, forcing or challenging him to use the left hand. This technique has shown the same type of improvement in function that the casting treatment has done (that I talked about previously). I am praying for his grasp to improve in the left hand.

It was fun to come home after being gone over a month with a giant leap in his development and I think he is loving it too. He is an explorer, he tries new things, he loves to be outside, he loves to play with his sister, and cars, and magnets, and he gets frustrated with things that don't do what he wants, puts everything in his mouth, he is a lover, but not a lover of bedtime (sometimes), he is starting to copy words (like yum and touchdown and more), he likes to eat some things now :), he has drinking competitions with Anna, he opens his mouth for a kiss from Roxy (gross), he loves to take a bath, he loves to play piano, he sings and hums, and best of all he smiles the most amazing smile every time I look at him. I love my little boy.

We have two Phoenix trips scheduled for January... one for AFO fittings and one for eye surgery. Another update after that. Thank you for your continued prayer and support, we couldn't be more blessed!