Tuesday, May 13, 2008

Sometimes it's hard to come up with a title

The girls are both asleep for naps for the first time in ages. Last night's late ice cream excursion with Brother David seemed to tucker them out for today...I'm glad they are both asleep. It gave me a chance to rock Nathan for a good long while without having to tend to anything else. I talked to him and sang to him and looked at his vibrant expressive eyes for the longest time. Gosh, he's gorgeous. He fell asleep in my arms, but I held on a little longer than I usually do before laying him down. It was a wonderful time with him.

Today's therapy session was rough. We met our new therapist today, and I am so pleased to say that she is so great. Andrea (our old therapist) was so wonderful and I dreaded having to switch therapists, but Maria is so sweet and seems to be just as wonderful as Andrea. As Maria evaluated Nathan, some additional problems jumped out at her. He can bear weight on his legs right now, but the muscles in his calves are way too tight. She said that she sees this a lot in little boys with muscle disease, and she showed me some exercises to help loosen those muscles up.He also keeps his hands clenched a lot of the time. When babies start pushing themselves up, their hands automatically release from the "clenched" appearance. The problem is that Nate is not pushing himself up and may never be able to, so we have to train his brain with different hand exercises to relax his fingers. Hopefully this will help him be able to grasp certain objects and be able to use his fingers.

But the hardest thing today was the realization that I am probably going to have to stop nursing him soon. I knew that it was a very real possibility that I would have to stop, but I didn't know that it would be this soon. And I didn't expect that realization to be this hard to bare. I can't help but think that this is the first step of preparing for separation between my precious son and myself.

Mu gut feeling for the past month that his feeding cycle isn't normal was apparently right. Maria asked about his feeding, and I told her that he seems to take in a lot of air when nursing...like he can't keep latched on for long. This would be the reason he has always been so gassy. She asked how much and how often he ate (the neurologist asked this last week also and just kind of grimaced when I told him), and I told her every 2 hours and about 2-2.5 ounces whenever we fed him a bottle every once in a while. In all actuality, he has been needing to eat every hour to hour and a half for a few days now.

My thoughts of late were true...he gets tired before he gets full. That would be the reason he eats so often. And milk coming from the breast is a lot slower than a fast flow nipple from a bottle that we are probably going to have to use. Maria said that she was going to immediately contact our pediatrician for a referral to begin Occupational Therapy to work on his feeding problems. And I am going to enjoy every single nursing session the little guy and I have together until it is indeed time to stop.
I was having a rough emotional day before Nate's PT, so I prayed that the Lord would give me strength through the session. He graciously did just that. But I surely was glad that Jay was home with the girls so he could hold me in his arms as soon as I got home. Gosh, I love that man.

I talked with our pediatrician on the phone yesterday. It was difficult to hear the sadness in her voice, but it was wonderful to be able to talk with each other about the peace and comfort that can only come from our Heavenly Father in these difficult times. I was telling Jay last night how much God has blessed us with faithful doctors through this journey and how helpful that has been. A few minutes later, Andrea, Nathan's first physical therapist called.

I told Andrea about the visit with the neurologist, and after talking for a few minutes, she did something that I will never ever forget. She said, "Amber, can I pray with you here?" And she uttered a sweet, heartfelt prayer that brought tears to both of our eyes. Oh, how thankful we are for the people taking care of our son here.

Our pastor, Brother David Crawford came over for a visit last night. It was wonderful. It was hard at moments, but it was a sweet time with him. The girls were so excited he was here. Abby has been attached to his hip for the past few weeks each time we are around them, and she spent all day collecting different leaves and flower petals to give him last night. The other day she said, "Mom, I can't wait for winter time because then Brother David and I can share a hot chocolate together." I then asked her if she had a crush on Brother David and she blushed and gave a sheepish grin and said, "Yeah. I just love him." It makes me chuckle every time I remember her saying that.

Nathan is a hit with the ladies at the front desk at the therapy place. They asked to hold him today while I had to sign some paperwork, and they just kept laughing at him flirting with all of them. Like I've said before, he has a smile that will melt the stoniest of hearts. As I was paying for the visit before we left, one of the ladies got really close to me and whispered, "I think he is the cutest little baby that comes here." I beamed with pride and agreed whole-heartedly.


Tiffanie on May 13, 2008 at 3:05 PM said...


He is gorgeous! I am sad I don’t live close enough to get to hold him! I just caught up on your blog…and we have added your beautiful family to our small group prayer list!


september on May 13, 2008 at 3:32 PM said...

I *love* that last shot of him--he's got that happy grin and the squished up baby face. I'm still praying for you and your family and will continue to do so. He truly is a very special and exceptionally loved little boy.

Anonymous said...

Nate's story has truly touched my heart. You and your sweet family are constantly in my thoughts and prayers. I received an email from my little sister (which she received from Clifford Gowens) with the link to your blog. My name is Nancy(Bass)Harris and I know and grew up with your Dad, he is the sweetest man! We are actually distant cousins. The first moment I saw your picture, and also little Nate's, it wasn't hard to tell you were from the Gowens bunch. You have such a sweet family, your daughters remind me so much of my older two! You are an amazing writer, you must have inherited that from your Dad, and your photos are beautiful! I just can't explain to you how much reading your blog has lifted my spirits and brought tears to my eyes at the same time. You are so strong in your faith, and I know that strength comes from our Lord and Saviour. I think Nate is the most precious baby boy I have ever seen and you are truly blessed to have him in your life! My heart breaks for you. I know that the Lord will continue to give you strength and grace and wrap His loving arms around you all. Love and prayers,

Merrie on May 13, 2008 at 4:30 PM said...

Nate has your smile, Amber. :)

Anonymous said...

Oh Amber, I cry every time I read your posts. Then I laugh at Nate's adorable pictures and then I cry more. Still praying all the time for you all, love, Dawn B.

Kathy U on May 13, 2008 at 5:57 PM said...

We all knew Nate is the cutest baby at the doctors office but it is nice to have conformation.:) You are right his smile does melt your heart.
sis Kathy

Michelle on May 13, 2008 at 6:49 PM said...

he does have a smile to melt hearts!

I'm sorry the PT noticed other things to cause some concern. I'm sure it wasn't easy to hear. You know, Lucas still has his hands in fists a lot of the time - even while on his tummy and pushing up.

I'm still praying hard that the test results will be negative and there will be some other answers to what is going on with Nate. Praying that you contine to be comforted by God's presence.

Dana on May 13, 2008 at 7:26 PM said...

He is just perfect Amber and I wish I could squeeze him and you....your post made me cry because I can just feel your love for him through your words....I continue to pray.

mollie on May 13, 2008 at 10:08 PM said...

Look at him!! Is he getting real big boy hair?? He sure does have your smile. Sweet boy.I wish I could squeeze him!
You are such an encouragement to me. He is blessed to have such a wonderful momma!

Tara on May 13, 2008 at 10:21 PM said...

Oh my gosh, the last picture of him melts my heart, I love that smile!

oh amanda on May 13, 2008 at 10:54 PM said...

Amber. He's just the best. Aching & praying with you.

Kayla on May 13, 2008 at 10:56 PM said...

Oh my sweet friend. I may have to agree with you. He does have the sweetest smile. I love to see all your beautiful pictures of him. You are in my prayers many times a day. I wish I could pass some strength and sleep your way. I will add nursing to my list of prayers for your heart. I know you want to do what is best for him even when it is hard on you as a mommy. You are doing a great job. His happiness and content spirit shows in his smiles.

Anonymous said...

Sister Amber,
All I know to say is that our Reedemer lives...I love you and Nate and Jay and Abby and Emma so very much! All our love and prayers!
Sister Dina

Kim on May 14, 2008 at 12:11 AM said...

Amber & Jay,
Small world, huh? Sis. Donna told us about Nate and gave us the blog address. We are praying for you all. The children are beautiful!
Kim and Randy Davidson

Amy ~Emma Hope's mom SMA type 2 said...

I love hearing about your family!

I am sorry you have to give up nursing him. I know it isn't the same but you can always pump and give him BM. Lots of SMA babies are on it. There are a bunch of moms who even purchase it and give it to their older kids. BM is really good for our kids.

You have a beautiful family and I have added them to my prayer list.

If you would like to talk to another SMA mom, please email me.

Amy mom to Emma Hope SMA type 2
www.emmahopeworld. net

Anonymous said...

I found your blog one day and have been reading on an almost daily basis since you were pregnant with Nathan. I don't know how to explain it, but I just felt compelled to follow your blog! I worried when you were pregnant and thought he might have Downs and was so thankful when he was born that he didn't. The past couple of days I have been brought to tears worried about this beautiful little boy. I pray that you continue to find strength through the Lord and know that there is a stranger in TX praying for you and your sweet family.

BTW, I have a 2.5 year old boy named Nathan too.

Take Care.

Amy Barry on May 14, 2008 at 2:49 PM said...

Amber, Nathan is so precious. I have been thinking of you non-stop for the past few days. I wish there were something that I could say or do for you. If you need ANYTHING please let me know. If you want some photos of you and Nathan or family photos I would love to gift that to you.

Mom of TWO Princesses on May 14, 2008 at 3:10 PM said...

I have to agree with the ladies at therapy. He is the cutest baby! I'm glad you like your new therapist as much as the first one. Your posts always bring tears to my eyes. Sending more HUGS & prayers your way!

Katie on May 15, 2008 at 8:16 AM said...

Who WOULDN'T agree whole-heartedly?? He is seriously the CUTEST little baby boy! I am so glad you are in sweet, tender hands.

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