Thursday and Friday this week I took Liliana down to the Cleveland Clinic to have her Barium swallow study and her follow-up with the Gastro doctor. We got down there by 9 am on Thursday and she did exactly how I thought she would. She was able to take the solid foods (applesauce with barium) pretty good, and she did ok with the nectar thick liquid (that's what they call it, must be because it's the consistency of fruit nectar?), and then failed with the thin liquids (regular formula). So we were sent home with some samples of simply thick to mix with her formula to make it nectar thick. We got home and OT was here and was very excited to hear about the results. She immediately wanted to jump in and get her started on taking the nectar thick. We spent some time in my kitchen trying to find the right sippie cup and container to mix it in. That was a trip! We finally decided to use a regular baby spoon after dirtying up several cups and me trying to make the holes bigger on one (oops! didn't work) and give her a little at a time on there. She responded pretty good but she really needs a lot more work! So now I have one more thing added to my plate that I have to work on with her.
Friday we had an afternoon appointment so after deciding what to do with Gwynny because she was running a low grade temperature I ended up taking her to my sitter who was very nice about taking her. Lily and I headed back down to the clinic and saw her gastro doctor. Good news is she is gaining weight nicely! She was 13 lbs. 14 oz. beginning of March and she is now 14 lbs. 13 oz. now! I am so happy about that! We talked at length about her feeding issues and she and I both agree that it is going to take a miracle for Liliana to master taking enough food by mouth to avoid having to get a G-tube in her stomach. We are still going to give her until the beginning of June before we make any decisions. Just so happens that she is scheduled for an MRI of the brain on June 1st and will have to undergo anesthesia for that procedure. They could try to schedule both her MRI and G-tube surgery on the same days so she wouldn't have to have anesthesia twice. So anyways, there are a lot of if's and maybe's here. We just need to pray that God's will be done. Whatever happens give me the strength and courage to deal with whatever comes my way. Sometimes I feel like throwing in the towel because it just seems so frustrating. Like part of me is saying why are we even bothering with trying the nectar thick if it probably won't make any difference, but I keep on keeping on.
On a different note, I went to a Kiddie Kloset sale today and I found a Bumbo seat for Lily for $8. I am so excited because so many people recommended it for helping with sitting up and eventually I could feed her in there. I also scoped out high chairs but no one had any portable space saver chairs like everyone recommended. I am probably going to go to Baby's R Us sometime this weekend or this week to check out the Fischer Price one. Anyways, it was a fun way to start off my Saturday! Have a great weekend!
4 comments:
Lila's on nectar thick Simply Thick. We have tried all kinds of different cups and straws- if you have any questions, please feel free to ask. She's been on Simply Thick since birth.
I think it's pretty reasonable and normal to feel like throwing in the towel. Just like all things, there are good days and bad. I'll keep praying for Lily and all you that God will work a miracle and that she won't need yet another surgery.
It sounds though like she is doing really great! What a FANTASTIC weight gain. You've got a little chunk-a-monk now. :-) Don't you love the leg dimples?
http://www.toysrus.com/product/index.jsp?productId=2508005
Did you find your high chair yet? This one works great for Marissa. :-)
Sounds like good new even though it can be frustrating what we consider good news now. What a steal on the Bumbo and we love our fisher price space saver highchair. I haven't put Lindsey in it but it worked great with Brooke. SHe just stopped using it at 2 1/2. It doesn't have much for head support and they can slide around in it since it is so roomy so we won't be pulling it out for awhile.
Post a Comment