Ella turned 7 months on March 31st so I'm a little behind on my updates but oh well. And don't look at how enormous her feet look in this picture just focus on the cute smile. Sorry about the weird angle there folks. Anyway, this month has kind of been a crazy one but now that I think about it, every month is crazy for us so really that's nothing new. I thought I would just update by answering some commonly asked questions that people ask us. It's not annoying for people to ask the same questions over and over. I actually appreciate the questions because it shows that you care and I know you are thinking about us. I just thought this might be an easy way to fill you in on what's going on.
Q: How are things going?
A: Things are okay. Everyday continues to be very hard but things are okay. I wouldn't say things are great and I wouldn't say things are bad, they're just okay. We continue to be very busy with Ella's appointments and most weeks we have appointments everyday between OT, PT, Dietician, general follow-up appts. and going to Dallas for her cranial band. Even the days we don't have appointments are still difficult just being at home and working on feedings, making sure Ella gets her medicine, etc. Because of that it is very hard to figure out how we are to live a "normal" life when our days our filled up with things for Ella. This is a marathon we are in and it is going to be several more years of challenges still to come so we are working on processing how we are going to function as a family with a child with special needs. That's right I said years. So, we are okay.
Q: How is Ella doing?
A: Ella is doing well. She is happy, smiles all the time, and loves to squeal and wiggle. She loves her sister Eva and thinks she is hilarious. Her little giggle is just the sweetest thing. She loves her Daddy to pieces and just lights up when he comes home from work. Ella is making a lot of good progress in her physical therapy. She is getting stronger overall and is using her left arm a whole lot more than she was before we started therapy. We are working a lot on tummy time and being able to push herself up. This is hard for her because of her shoulder problems and limited range of motion with her left arm and because Ella's abdominal muscles are very weak due to her omphalocele. At her omphalocele repair surgery two days after birth they were not able to pull her abdominal muscles closed because it was such a tight fit getting all the organs back in so they were only able to cover the organs with her skin and a synthetic patch (since they couldn't even get her skin over everything). She has a hernia and more than likely in the next couple of years will need surgery for this too but we're not even thinking about that right now, we have other issues to deal with ya know? So, because of this, obviously her ab muscles are weak and coupled with her shoulder problems this makes things like sitting up, pushing up, pulling up, etc. very hard for Ella. She is doing great though and we can tell she is really getting stronger so it is so encouraging to watch her progress with her physical development. She is a fighter and we are so proud of her. We have thrown milestones out the window because we know that Ella is on her own timetable and it's just going to take more time for her to accomplish what other babies her age can do and that is okay.
She is continuing to slowly gain weight so we are thankful for that. She is very small for her age (11 lbs 4.5 oz at 7 1/2 months) and is nowhere near being on the charts so obviously this is a constant concern for her doctors. We, on the other hand feel good about her weight and the fact that she IS gaining. It might be slow and a little at a time but she is gaining. We know she is small and we can't relax on our feedings yet because every drop counts but she is happy and healthy so that is good.
Q: How are feedings going?
A: Does this picture answer your question?
So this is the face she made after trying bananas...nice. Honestly I can't blame her because do pureed bananas that have been sitting in a jar really sound appealing to anyone? Doubt it. Feedings are about the same, not much better, not much worse. Her bottle feedings continue to be very inconsistent. Sometimes she will take between 2-3 ounces and the next feeding she will take 10 mls. which is next to nothing. Needless to say we are still using her feeding tube for every feeding but that is okay. I feel like I have finally reached a place of acceptance with this and have realized that I am doing all I can possibly do to make her eat and things are not any better so if she needs the feeding tube then she needs it. It has taken a lot of pressue off emotionally and I don't get as upset when we have a bad feeding because I realize that this is just how it is. I haven't given up hope, I have just come to a better place of acceptance with what Ella needs.
I know it is so hard to understand this feeding thing if you haven't had a child that struggles with it and believe me it's hard for me to understand it as well. It's just not an easy fix or a matter of finding the right bottle, the right way to hold her etc. Feeding is just a big struggle for children like Ella. I mean can we all just remember that half of her stomach and intestines weren't even in her body for 9 months in the womb and then were shoved back inside her when she was born? Yeah, if that were me I don't think I would want to eat either. Poor baby. Anyway, so feedings are a big challenge and we are anticipating that they will continue to be for several years. That doesn't necessarily mean she will have the feeding tube for several more years it just means that we have a long way to go with the whole feeding thing.
We have started trying some baby food and when I mean trying I mean like her licking the spoon a couple of times. She definitely is not opening her mouth to take bites but we'll get there. If she even sticks out her tongue to try it I am ecstatic. It's going okay, sometimes she seems to enjoy it and other times she gags and loses her whole feeding which is brutal but that's just how it goes. So we are working on trying new textures and flavors every day. During the time she is fed through her tube I give her something to chew on so she can associate that this is a time to eat even though she isn't being fed through the mouth and so she can explore new tastes.
An apple a day keeps the doctor away! Umm, not for us. Whoever came up with that saying was apparently talking out their rear.
Biter biscuit anyone? They'rrrre tasty!
These pretzels are making me thirsty! Remember that Seinfeld episode? Classic.
Carrot sticks are, in fact, this scary.
So anyway, I'll spare you more details and all the micro-managing we have to do with this feeding battle but in general feedings are a struggle but we are just plugging away and doing the best we can. It will not always be this intense and we are thankful for the baby steps Ella is making. Please keep praying for her feedings and for her to continue to gain weight.
Q: What is the timeline for her shoulder surgery?
A: We don't know yet when her surgery will be. Her MRI is scheduled for June 17 at Scottish Rite. We originally thought it would be in May but they want her to be a little bigger so it will be in June. Plans for surgery will be made once they get the results from the MRI. We are hoping that it will be sometime this summer but it depends on what they find and how Ella is doing overall and I'm sure her weight will be a factor. We will know much more after this MRI so we'll keep you posted. Until then we are just in a holding pattern and trying to get her as big and strong as possible.
Q: How much longer will she have the Cranial Band?
A: We are hoping she will only have to wear it 6-8 more weeks. There is not a definite timeline but that is the hope. Her head has really responded well and we see a huge difference in the shape already so we are really excited about that.
Q: How is Eva doing?
A: Eva is doing great. She is the best big sister to Ella and just adores her. She loves to read books to her, hold her, share her toys and just love on her. It is really sweet. Eva seems to understand (as much as a 2 1/2 yr.old can) that Ella needs special care and she is just so good with her. She loves going to her little school two days a week and she goes to Bible Study Fellowship once a week with "Grammy" (Rick's Aunt) and she loves all of those things. Sometimes I get a little sad that she is gone alot and that I can't be the one to take her to school or take her to the park but right now we are just doing what we can to survive. She feels very loved and I know she is being blessed by spending this time with others and developing new friendships and relationships that wouldn't otherwise happen. So Eva continues to be a joy for us and makes us laugh constantly. She is always up to something. :)
Don't you just love those back-packs with a leash that Eva is wearing? Yeah, that's right, she's one of those kids that needs a leash. It's great...we've got one kid with a helmet, the other with a leash. What next?
Q: How are YOU doing?
A: I am doing okay. Every day is different but for the most part I am okay. It is very hard but I feel very blessed by all the love and support we have around us. Rick is an AMAZING father and husband and I could not do any of this without him. He works so hard all day at work and then comes home and immediately is working at home to help me with the girls.
We are tired, at times overwhelmed, confused, and angry but also feel very blessed and know the Lord has not left our side. We sometimes wish we had a crystal ball to know how much longer all of this will last but I'm sure if we knew what all was to come we would not be able to handle it so the Lord has continued just to provide what we need day by day and we are trying to just take things day by day. Like I said before, we are working on coming up with a plan for how we are to live and do "normal" things since having a child like Ella is so consuming. Normal things meaning like cooking, cleaning, going to the grocery store, picking Eva up from school...none of which I am doing at this point. We have been so blessed by all the help with meals,gift cards, housecleanings, the gift of a care-giver for Ella who comes three nights a week so we can actually get some rest and so much more. Incredible! I know it seems that after 7 months things should be better but the reality is that we still need a lot of help so we are so thankful for all that everyone is doing to help us. Please be praying for us as we process how to move forward and come up with some sort of structure that will work for our family.
I know the Lord is building our character through all of this and someday we will be able to use all that we have been through and learned to help others. I can't wait for that. Until then we are relying on the Lord for wisdom and strength to help us through these hard days. He has blessed us so much and has given us loving families and friends to walk this road with us. We couldn't do it without all of you, thank you!
Saturday, April 18, 2009
Posted by Amy at 10:19 PM
Sunday, April 12, 2009
Thursday, April 2, 2009
Do you see this? Isn't it great? The beginning stages of wrist fat! Wrist fat is one of my favorite things about babies and Ella is finally beginning to get some. I love it when babies look like they have those screw-on hands. You know when they have so much wrist fat it looks like someone just screwed their little hands too tight on to their arms? Yeah...love it. I'm thinking that if you have fat rolls on your wrist you're doing okay and there's really no chance you're going to wither away. And I'm pretty sure that only in the first year or two of life is anyone really ever thrilled that they have wrist fat. So proud of my girl and her wrist rolls. By the way, she weighed 11 lbs. at the doc today, woo-hoo!!
Completely off topic but I just discovered this children's show called Yo Gabba Gabba. I know most people have probably seen it because it's been on for a few years but it's new to me. Anyway, since Ella still has to be distracted somewhat to eat we've been watching it sometimes while I try to feed her. Have you seen this show? Bizarre and hysterical at the same time. I know I have a warped sense of humor but seriously this show is just so strange that it's funny. I don't even know how to describe it but let me just start out by saying that it involves a grown man dressed in an orange shag wig and orange unitard. Unitards could be a whole other post in itself but as if orange unitard guy isn't enough it also features 80's rapper Biz Markie. I know, awesome right? Ring a bell with any of you old-school rap fans out there? You remember Biz Markie, famous for his beat-boxing and the song "Just a Friend." So great. I mean who wants to watch Dora or The Wiggles when you've got Biz Markie teaching kids about personal hygiene by beat-boxing about things like how to brush your teeth? Not me. :) After his segment it's not too far out there to say that on any given day you might also see a girl playing her recorder through her nose or a guy teaching kids how to do "The Robot." Honestly, that's good stuff. I'm not making this up, so weird. It doesn't disappoint because every episode also ends with all the strange characters of the show inviting a celebrity friend for "dancey-dance" time where they all dance together. So far I've seen Jan from The Office and Rachel Dratch from SNL. Not even kidding. Simply stunning.
Next post I'll have something more worthwhile and mature to write about. :)
Posted by Amy at 10:13 PM