Saturday, October 3, 2009

13 Months Old

13 months people. 13 months old...unbelievable I tell you. I would say time flies when you're having fun but I wouldn't say times are so fun around here or that time is flying. Mrrrr...Mrrrr. I know, Debbie Downer strikes again. Things have been a little rough so I haven't been blogging because a) our daily schedule is crrraaazy and I haven't had time and b) honestly, I've just been a tad bit overwhelmed and in a foul mood. I know that attitude is a choice and I definitely was not choosing to be very joyful, I admit that, but sometimes I just get tired of all of this and trying to stay positive all the time. Things are still very hard and although Ella has come a LONG way, there is still a LONG way to go and it's just overwhelming at times. Trying not to complain here but I'm not good at sugar-coating things so I'm just being honest.

The past couple of weeks we've been transitioning Ella from Enfamil A.R. to a higher calorie formula, Nutren Jr., in hopes she would tolerate it well and we could spread out her feedings as well as not have to give her as much at each feeding. This plan has not gone well. She does not like the Nutren Jr. and refuses to take any of it by mouth and fights you the whole time. So we went from her taking some of her old formula by mouth, which over the past year we have worked really hard to get her to do, to her taking nothing. Zero at every feeding. This was very discouraging for me because this was not the direction we needed to be heading. In addition to not eating she was also vomiting after almost every feeding as well as in the middle of the night. Awesome. So needless to say we needed a new plan. We had an appointment with her GI doc and laid it all out for her and told her we're coming close to being at the end of our rope with this whole feeding every three hours thing. I mean really, she's 13 months old and we're still on a newborn feeding schedule! Killin' me here. I understand why it has to be this way but still, it's killing me. To clarify, the reason Ella has to be fed every three hours is because she has a small stomach and is not able to tolerate large volumes so we have to feed her less volume more often until she can tolerate more. Also, she is very small for her age so she needs all the calories she can get.

Anyway, the doctor said to go back to feeding her Enfamil A.R. by mouth since she did okay with it and to put the higher calorie formula through her g-button. It makes feedings a little more involved but this plan works much better. So we're doing a combination of both formulas and she told us for mental health reasons to just skip one feeding a day to give us all a little bit of a break. It has helped and Ella is not vomiting like she was and she's doing better taking some formula by mouth so that is good. Now we have to calculate how much she's taken by mouth, subtract this and that, multiply something else and voila'...we come up with how much of the higher calorie formula she needs in her feeding tube for the rest of the feed. And this happens every three hours still during the day with feedings taking close to an hour so do you see why I miiiight be going crazy? Where are my plates when I need to throw something???

Enough about that, in other feeding news Ella is continuing to make good progress in feeding therapy. She is doing much better eating meltable solid foods like puffs and has pretty much mastered that without much gagging and vomiting. Yea!! It still happens but her gag reflex is getting much better and she is able to recover more often after a gag these days and not lose everything which is really good. I'll spare you the gagging and vomit talk this post since you got an ear full last time. You're welcome. Anyway, this past week we have been trying soft foods like cooked pasta, diced peaches, etc. The other day she ate three bites of mac and cheese! AND, she really likes ice cream! I mean a little cookies and cream with double chocolate sundae syrup never hurt nobody...shoot. Funny how this works isn't it? I never would've given Eva spoonfuls of this when she was 13 months but with Ella we don't care what it is as long as she'll eat it. Nice, I know.

Dinner of champions my friends. Maybe this is what we should be putting in her feeding tube to pack on the pounds. Brilliant idea if I do say so myself!

She's so funny. She would just smile every time Rick would offer her a bite. Don't know why I'm surprised because who isn't in a better mood when they're eating ice cream?

Last week we also had Ella's follow up appointment at Scottish Rite and it went really well. They were very pleased with how she is progressing and that she is crawling. They released her to go ahead and start therapy so we have started back with occupational and physical therapy. She is using her left arm more and more but it is still pretty stiff and tight but with time and therapy things will get even better which is encouraging. We're not sure what her range of motion will be but we're going to treat her as if she will have full range and just see how she does with everything. We have great therapists with ECI that have been working with Ella for the last year leading up to her surgery and they will continue to see her so we're glad about that. They are awesome and we're so blessed to have them. We'll go back for another check-up in the middle of this month to see how things are going so we'll just keep on keepin' on.

Now that we've started more therapy our weekly schedule is very full and we have something almost every day and there are some days where we have two sometimes three appointments in a day for Ella. It is exhausting but we feel very blessed to have great doctors and help for Ella. I'm getting used to the new schedule with feeding therapy twice a week, OT and PT both once a week, dietician once a week as well as other random appointments. It's hard but I know it's going to help her and it will not always be this crazy. But, this is still a marathon we are in and we realize to keep sane we are going to need some extra help. So, the good news is is that a friend of ours from church is going to help us by coming a couple of days a week to help me take care of Ella during the day. She will start this week and once she feels comfortable and we have everything worked out it will allow me time to be able to leave the house, run errands, etc. which I haven't been able to do unless there was someone to keep Ella. We are very thankful and excited about her helping our family so that is a praise.

Other than that things are okay. Eva's doing well, been a little under the weather this week but doing well. Ella is doing and saying more things everyday. She started clapping this week and tries to mimic different words and sounds. I won't bore you by listing the things she says but she is going to be our talker I think. She is continuing to gain weight which is a miracle after the past week or so of feedings being hard and her vomiting so much which is a praise. She weighs close to 16 pounds now! So exciting AND she is actually on the charts now for her length and head size. Barely on the charts but still it shows we're moving in the right direction. Yea Ella! She's crawling everywhere and is getting faster, we can hardly keep her contained. She doesn't want to sit in her chair during her feedings anymore so we let her crawl around to keep her happy while she's hooked up to her feeding tube which is fine but it makes things a little wild. You can't leave her unattended because if she crawls away from her I.V. pole then the feeding tube gets stretched too far and ends up getting pulled out of her g-button and then you've got milk going everywhere. Lovely. So, we have to follow her around the house with her pole to make sure everything stays in tact. She has a little backpack that was made to hold her feeding pump, bag and tubes but I tried it on her the other day without anything in it and she did a face-plant sooooo obviously that's not going to work. So, if anyone has any spectacular on-the-go feeding tube ideas for crawling little babies besides following one around with an I.V. pole I would gladly welcome them. :)

Silly Eva...she dresses herself everyday. Stellar combo isn't it?

I promise that I really do feed my children. Eva is Miss Constant Snack Attack and I don't know what Ella thinks she's doing in the refrigerator because the girl is fed around the clock whether she's hungry or not. And of course, her little friend the I.V. pole is never far away. I need feeding tube backpack ideas asap people!

Fun with Daddy

By the way, anyone out there still watch Survivor? What is up with this Russell guy?? The dude is nuts. Can't wait for it every week!


Lori said...

love reading your posts! i can't even tell you how excited i was to see you last week at church!!

Cox Family said...

Amy, your kids are beautiful. I love reading your blog when I can, and seeing how everything is progressing with Ella. You are doing an amazing job! I know your days are very involved, but you can do it!

Randi Freeby said...

I love you so much. You are a rockstar! I pray for you everyday.

Summer said...

Thanks for keeping it real, Amy. Your posts are always honest, heartfelt and hilarious! I love that combo. We pray for you guys and for Ella's continued improvement every day, multiple times a day. I wish I was there to hand you plate to throw or just hang out with you when things seem overwhelming. I don't know how you do it. It really is amazing to witness your endurance through all of this-- the feedings, the throw up, the surgeries, the doctor's appointments. . . and on and on. When things settle down, you and Rick deserve the most amazing, relaxing beach vacation ever. Love you!

Jodi said...

First of all, I love how you throw in the Survivor reference right at the end.... like it just fit right in with the rest of your story. You crack me up. :) But no, we don't watch it.

Seriously, you ARE a rockstar! Kickin' butt and takin' names in the world of Mommyhood. Thank you for being so REAL in what you share... it helps me pray "better" for you guys. Know that we love you and love those girls!

Ann Reese said...

Uh, yeah, Russell is nuts! We might be in Thailand but you know we're still catching up on Survivor!

You are doing a great job Aimes. Those two girls are so precious and you are doing a magnificent job loving on them and giving them the best. I know it is hard right now, and I know it has been hard for a LONG time now, a very LONG time. Hang in there--your hard work is paying off. One day I'll get to sit down with my nieces and tell them of the many ways you gave of yourself to see them flourish. And tell them of how you clung to the knowledge that God is faithful even on the hardest, most frustrating days. I love you and I love your girls. And I guess I love Rick too. :) Yall keep on keeping on. I'm so proud of you.

Nancy Giurlanda said...

God Bless that sweet Ella....seeing that big smile eating chocolate ice cream, what a baby doll. You and Rick are doing such an amazing job, I am so proud of both of you. I know it has been a long journey for you both with your sleepless nights and long days but the rewards for all of your hard work are very apparent, just seeing how far sweet Ella has come and how strong she is getting and that huge smile is so heartwarming. I am praying for easier days and strength for you. Just keep that hilarious sense of humor of yours honey, it will get easier I promise. Okay now Russell !!! we do watch Survivor and honestly that man scares me, he would be the last person I would want to be stuck out in the wilderness with !! what a NUT. Big hugs and kisses to all of you and I am praying for a great week this week for you. Love you all.

Jen said...

How about getting one of those assistance dogs that will follow her around and wear the backpack for her? Could also be helpful if she vomits...ew.

Love you guys!

Specks said...

What a great post~ I am loving that Ella bella loves her ice cream. A girl after my own heart! You know I feel you in major way....I'll just leave it at that :). I have seen these really cute little back-packs for pumps and the bag of formula that kiddos on the move can wear on their back, sit, crawl, walk, etc. The bag of formula shuts air-tight and doesn't have to be upright all the time (or so I have been told). Love you soooo much! KJS

Brooks Inc. said...

Amy- You are the most fun writer! EVER! Still praying for each of you and precious Ella! Love you all!

Shanta said...

Amy, your blog is wonderful. You make me want to 1) eat choco ice cream; 2) kiss Eva and Ella; 3) kiss that lady from your church coming over to help; 4) invent a mobile tube/iv contraption (kelly's backpack idea sounds promising); 5)and start re-introducing "shoot" back into my vocabulary.

So much to do! And of course, pray. We love you so much!
P.S. my word verification was "undies." Thought you needed to know that.

Chad, Jennifer, and Hudson said...

No wonder you don't blog write books at a time. :) Just checking in on you. It's been a while. Enjoyed your post and I don't know how you made it every 3 hours for a year. The saying is true, you'd do anything for your kids. You are a great mom! Blessings!