Wednesday, October 21, 2009

Just a couple of quick things. First of all, Gaines was weighed today and he seems to be back on track. He gained 8 ounces which is just over what he should be gaining. He is now 12 lbs 1 oz. He doesn't look any fatter to me but he is definitely a long little joker. The home health nurse mentioned today that he is almost hanging off the scale. So, that was good news.

He's still spitting up regularly and in large amounts but he is taking more in so I guess he is growing. As long as he is growing I can handle the spit ups. Its still super annoying and Alabama Power loves the amount of laundry we are doing these days, but I can handle it. I am however, starting to take matters into my own hands. Yesterday I fed Gaines cereal. He did great with it. He gagged on it here and there but it all stayed down. As did the bottle that followed it. No doctor has really been in favor of doing cereal or baby food at this point as the bottles are so much more caloric for him but I figure if its in addition to the bottle, no harm done. Last night's bottle stayed down so we'll see if it keeps up. Granted, his last bottle of the day is generally his best at keeping down but still. I think we might try cereal twice a day and see what happens. I remember when Reed was little and I'd ask about him spitting up the doctors told me that he probably would until his food started getting heavier, so we'll see.

The Early Intervention folks came over yesterday to assess Gaines and see if he qualifies. To qualify you have to be more than 25% behind your adjusted age. Gaines' adjusted age is 3½ months and he tested as a three month old. This means he is less than 25% behind...a really good thing. Now, he still doesn't really want to hold his head like he is supposed to so she didn't factor that into his score. Right now, there are a couple of reasons that he could be holding it back: 1. Helps him breath. 2. Helps with his reflux hurting. 3. In and effort to keep pressure off of his hernia. The hope is just that he is able to sit in his bumbo chair by adjusted age 6 months with his head held upright for a minute. PLEASE pray with me that he makes progress in this specific area.

I have a peace about his lung issues and the reflux as I know that he will outgrow them but the head issue/milestones meeting really weighs heavy on my heart. I so badly want Gaines to be a "normal"kid but to get to that point the first step is good head control. I have to admit, I've had a really hard week worrying about that. I KNOW that I can't control it and that we are doing everything that we can do and I KNOW that we are tremendously blessed to have Gaines in our lives no matter what but having a giant question mark about your child's future is a very hard thing to deal with. I'm just praying that it is God's will to be completely without any signs of his prematurity and rough start in life and that he will be an example of God's grace and answered prayers. He has battled through so much already and I know that he will keep fighting.

So, back to EI...the good news is that he technically doesn't qualify for EI but because of his risk factors, he is going to be able to receive the services. Risk factors like his prematurity, etc. So, we are now waiting on an administrator to work up a good plan for him. The other positive news from that appointment yesterday is that his private physical therapist is also his EI therapist and she saw him yesterday for the first time in about two weeks and was really pleased with his progress.

Now for Reed, he had a great two year old check-up this week. He got a finger prick (no crying) and a flu shot (big tears) but he was so good throughout the whole appointment. Our doctor thinks that he is ready to start potty training so I think we'll see how that goes this weekend. Any tips there are greatly appreciated. Sounds like more laundry to me but maybe he will take to it well. OH, one more thing. Reed got a "bike" (tricycle) for his birthday and yesterday he was riding it using the pedals and everything. So grown up!

I think that's about it for eyes are so sleepy.

Love to all,



shanemotb said...

So glad for the update! Hugs and prayers for you all!

Colton's Journey said...

EI can be a great thing. They can get things for free (we managed to get a crib!!!) that otherwise would be costly-(we needed one with a side that lowered.)
Congrats on the awesome progress

The Elletts said...

I have read your blog from the beginning and have prayed every step along the way. Gaines has done great things already! I love, let me repeat LOVE that you are so involved with his care and his achievements. And I will continue to pray alongside you. A friend of mine recently said this quote to me about my husbands current job (long story and not the point) but when I read your post last night I just knew I had to pass it along to you.

"Don't get me wrong, I freak at times wondering how things will work out. But I know that is not having faith and faith is believing and trusting God when you can't see or know how he will provide. We wouldn't need faith if we knew how everything would work out."

I know you have faith, and I know that Gaines will continue to make wonderful strides. The first and most important factor is that you are so involved and care so much. :-)

Coach's Wife said...

I am so happy for all of you that Gaines seems to be making such improvements! I'm sure it's hard to not get discouraged at times, but I think it might be like a mother not realizing how big her child is getting because she seems them everyday. I may be wrong, since I don't personally know you, but since the therapist said he was making improvements, that's great! So since you see him every day, it may be hard to see such great things!

Moving on, Mr. Reed oh the fun you will have with the potty! I have 2 girls, one of which isn't old enough to potty train, but I've been through it once. Of course every kid is different and nothing works the same for 2 kids. But with my oldest, she LOVES candy! So I decided when it was time to potty train her she only got to have a piece of candy if she sat on the potty. When that caught on and she was sitting on the potty JUST to get a piece of candy, I only let her have one if she actually used the bathroom. I'm serious, within a week we were potty trained! Now, almost 6 years later, she still wears pull ups at night. That is a struggle because I don't think it's her intention to still need them, I think she has problems with her sleep in order to know to get up. I digress.

Good luck with all that going on and keep your head up. You are doing an AMAZING job handling all that has been on your plate since March and the boys seem to be doing awesome!

Becky said...

Great news about Gaines! I'm so glad he is progressing, even if it is not as fast as you hope.

Potty training...Good Luck! With Rhiannon, we had to do several different things to get it to stick. First, when she went in the potty, she got to put a sticker on the wall beside the toliet (we have tile on the wall). Then it progressed to if she went AND was still dry she got to put the sticker on the wall. When that lost it's appeal, we let her pick out a surprise at the store (Dora slippers) and made a chart. Each time she went potty and was dry, she put a sticker on the chart, and after a certain number of stickers she got the surprise. We still use the pull-ups at night and naptime, but she does great. Hope this helps give you some ideas!

Lori said...

Many years ago,at age 2 I gave my daugher (now 27 years old) 1 M&M each time, some people frown on candy/food as a reward, but what harm can 1 M&M do? It really works, and I like the idea of giving one even if they just sit on the potty. If Reed is hesatant about sitting try the m/m thing otherwise you can skip this part. I might suggest that to my daughter for her soon to be 2 year old. She's waiting till after our family Thanksgiving trip to start training her, however, she has gone poop on the potty.

Cary said...

Thank you so much for the update. I check the blog at least every other day to see how things are going for y'all. I am so glad the boys are doing so well! Keep the spirits up. God is definitely with you every step of the way!

Deanna said...

Glad to hear things are going well! Still praying for Gaines's progress.

We had trouble with our girls spitting up A LOT, but not really the uncomfortable, reflux-type. The pediatrician said he was fine with us mixing some cereal in their bottles, and it REALLY makes a difference. I only do about a teaspoon in a 6-oz. bottle, but it has cut out the spit up almost completely. You'll figure out what works! As long as he's gaining weight, he's getting plenty. : )