Jul
31
    
Posted (Tina) in All Posts on July-31-2008


We are practicing sitting in the new high chair. Today was pretty good. We had 3 sessions lasting 15 minutes each. They may not sound like a lot, but that is great progress for Ella.

This afternoon Grandma West left to go back home. We are sure going to miss her!



 
Jul
30
    
Posted (Josh) in All Posts on July-30-2008



 
Jul
29
    
Posted (Tina) in All Posts on July-29-2008


As a follow-up to yesterday (I was too tired to write), we went to Dr. Perry’s office for her 12 month well check. We had a great visit.

Ella weighed in at 15 lbs, 12 ounces and 27 1/4 inches long. She is getting bigger! We discussed the notes/strategy from the nutritionist that visited last week. Until the swallow study is complete, Dr. Perry increased her food intake 50 ccs total. So now she is taking 700ccs of formula each day. Her caloric intake is lower than it should be, so the increase in Alimentum should help. Once the swallow study is done and there are no concerns, we will reconvene and come up with a new feeding strategy. We’re hoping that we can resume with solid foods and phase out Alimentum to a pediatric formula, likely Peptamin Jr.

Retching has been a common occurrence with Ella these days. It used to occur in Gainesville, but seemed to be tied with feeding and volume. For some reason, it has increased since our return to Colorado (several times daily). But now, it is not related to feeding and she is retching HARD. It still seems to be directly related to secretions in her esophagus that she does not know how to manage (they block her airway). So, she coughs, then gags, then retches. Dr. Perry mentioned several ideas including dryness tickling her throat to maybe she is retching more because she is not eating orally and using the esophagus muscles. After discussing all the variables that could be impacting it, he wants her to go see a pediatric gastroenterologist to look at her esophagus and check out her nissen fundoplication. In addition, he increased her dosage of Reglan 50% from .4ccs three times per day to .8ccs three times per day.

A few days ago, I ceased giving her juice because she is retching so much that I am concerned about aspiration. Instead, I am simply giving her water. Dr. Perry expressed that water is good for her and to let her have as much as she wants. The good part is that it does not seem like we have to be as conservative with fluid restriction in her diet. Today, she drank 8 ounces of water – – that’s a lot for her.

Ella had some granulation tissue build-up on her g-tube, so Dr. Perry burned that off. Also, he provided us with some silver nitrate sticks so that we can manage that at home in-between appointments.

We discussed that we are anxious to try weaning the diuretics. We’ve always been concerned about the high dosage that she has been taking for so long. Dr. Perry recommended that we have labs taken in the morning before she sees the pulmonologist in late August, so we have a baseline. Plus, she hasn’t had blood labs done in a while and it is always good to check her electrolytes.

Ella also received her 12 month vaccinations. They did it just the right way – quick, fast. Two nurses came in and gave two shots in the each leg simultaneously and then two shots in each arm simultaneously. As you might expect, Ella did not like this part of the visit. But at least they understood to not take forever to administer 4 shots. I had to increase Ella’s oxygen and do lots of comforting afterwards, but she calmed down within 5 minutes. That’s pretty good for Ella – – earlier on this journey, she would not calm down that quickly when she would get upset.

It is so cute to see Ella interact with Dr. Perry. She likes him. She was rolling around on the table, kicking and grabbing the paper lining. Then, she would roll over and hand her binky to him or grab the hair on his arm! He mentioned that he can see a lot of forward development in Ella since the first time we visited. It is always good to hear that kind of perspective.

Ella, Grandma West and I hung out today at the house. Grandma West looked for projects to do – she found the swing that Grandpa bought for Ella’s birthday and put that together (Ella had a swing in Gainesville, but we sold it on Craigslist before coming back to Colorado). It will be good to put Ella in a swing again. I think we’ll try it tomorrow.

The Bun spent more time in her high chair today. The sessions throughout the day were for 5 -15 minutes, depending on her tolerance. I’m just placing her in it and distracting her the best I can to try and get her used to being in the chair. Eventually, if we get the “ok” to begin eating solid foods again, I’d like to have her eat in the chair! It would be a nice routine as we start that type of therapy again.

Aside from all this info, she had a great first birthday and is still the cutest Bun ever! By the way, is that a thumb I see?



 
Jul
28
    
Posted (Josh) in All Posts on July-28-2008

Here’s some photos from Ella’s celebration yesterday. We’ve also included a little video of her while Tina reads one of her favorite books plus a couple pictures from today.

P.S. This post marks our 500th entry in Ella’s blog. Wow…that’s a lotta posts =).



 
Jul
27
    
Posted (Josh) in All Posts on July-27-2008

UPDATE 3:00 PM (MST)

For those of you who missed out on the live broadcast at 2:20 pm, here’s the recording of Ella’s celebration. The action really starts 6 minutes into the video, so you can drag the slider to that point, unless you want to hear me and Tina’s dad talking on the phone. =)

UPDATE 2:20 PM (MST)

Heya Ella Fans…we’re going to try a last minute live broadcast of the Bun’s Birthday Celebration. You can view the video below by typing in the password: ella

The video will be muted initially but we’ll turn it up once we start singing Happy Birthday =).

You can also join the live chat below the video as well.

(uStream Chat)

02:28 ustreamer-22706 : Happy Birthday Ella!!! Love Matthew and Melinda
02:30 ustreamer-92442 : Hi Baby Ella. Happy Birthday.
02:32 ustreamer-92442 : Love watching this beautiful video.
02:35 ustreamer-32845 : hello this is angie from nc,happy birthday ella
02:43 ustreamer-33415 : Hi, watching from Frostproof, FL.
02:44 ustreamer-33415 : Linda Casey from Frostproof, FL.
02:46 ustreamer-32845 : hi ella,tina,josh,grandma,and grandpa,we love you ella
03:01 Jooosh : Thanks all
03:18 ustreamer-6774 : happy birthday ella from north carolina you are amazing



 
Jul
26
    
Posted (Tina) in All Posts on July-26-2008

Grandma West went a bit crazy today and bought party favors, so that we can celebrate in style tomorrow. It should be fun. Hopefully, Ella will be in a good mood.

The highlight of the day was having visitors from the south. Yes, Barb & Pat Dirrim visited us today. They live in Atlanta, but were visiting family in Denver this weekend. They have been following Ella’s progress since she was born. Although we had never met in person before, they emailed and asked if they could come and meet Ella. Well, of course!

It sure is fun to meet people face-to-face that have been following our journey. We had a nice visit and they showered us with birthday gifts for the Bun. One gift was an outfit that I think Ella might need to wear tomorrow. Barb took a simple pant and t-shirt combination, but embroidered the shirt with “the bun is one”. Too cute!

We simply added their gifts to our ever-growing pile of cards and gifts for the birthday celebration tomorrow (thank you everyone for your love for Ella on her first birthday!). Before the Dirrims left, we ended in prayer which was awesome. It is so nice to have an instant connection with people based on your shared faith in Christ.

We’re looking forward to tomorrow and seeing what the Bun does when she is crowned princess and has a lick of cake and ice cream! Although this celebration has to be small and simple, it can be Ella’s first introduction to many future parties that will occur once she gets older and healthier: Ellabrations!

Ella is getting her beauty sleep right now, so that she is ready to party!



 
Jul
25
    
Posted (Josh) in All Posts on July-25-2008

So a couple of you mentioned that the 365 day count was incorrect on Ella’s birthday (the 24th) due to the leap year. Initially I thought it was off because we started our count with day one on her birthday instead of zero…but that would have put us back another day, not ahead one.

I did some digging, and sure enough we had double entries for day 346. Probably due to some crazy late night posting that day =). Fortunately the mix up wasn’t too many posts ago, so I went back through and updated the other day counts.

Now, hopefully, you freaky OCD calendar people can sleep at night. 😉

Ella’s grandma made it in safely and Tina suggested that we go have a one on one dinner while she watched the Bun. It was nice to see my mom and catch up with her in person.

Grandma and I will be on Ella duty tomorrow while Tina escapes for awhile. We should have a good time hanging out together.

Sleep well my little angel.



 
Jul
24
    
Posted (Josh) in All Posts on July-24-2008

Wow…365 366 days….52 weeks…12 months…1 year.

What a year it’s been. I am in absolute awe of what God has done and what He continues to do through this sweet amazing girl. We have witnessed so many miracles along the way and so many lives impacted by Ella’s testimony.

Yes, today is Ella’s official birthday, but we’re planning to celebrate it this Sunday. My mom is coming into town tomorrow, and Tina’s dad will be around to enjoy it with us.

Ella has come a long way, but she has a very long road ahead. There are many foundational milestones that she still needs to achieve, and quite honestly, some days it is very difficult to look at how far she needs to go to catch up.

We spotted a rainbow outside of our window today. Just another gentle reminder to continue to trust in Him, rest in Him, and rely on Him.

Thank you Jesus for Ella Renae!

Heavenly Father, thank you for bringing us to this place. This place of celebrating Ella’s life…which was absolutely no accident. You knew about her before the beginning of time. You ordained everything she has experienced, and we trust in your perfect will for her life. Lord, continue to make her strong. Guide her life so that she would be glorifying to you. You are an awesome God, worthy of our praise. Thank you Lord…Amen.



 
Jul
23
    
Posted (Tina) in All Posts on July-23-2008

I can’t believe that a year ago today, I ate Olive Garden for dinner with Josh in Gainesville, FL. Also, I started to feel things moving around and thought I was experiencing Braxton Hicks for the first time. For those of you that were not following along back then, the title of the post was so correct: Braxton Hicks got it wrong!

I talked with my brother and sister-in-law late and got off the phone around 11:30 pm EST. They were excited that I was getting signs of an upcoming birth. I just seemed to think that it was at least 2-3 weeks out at that point. Boy, I was wrong!

By the time we went to sleep at midnight, I was feeling contractions (even though I did not realize it). Finally at 4am, I woke Josh out of a deep sleep to let him know I was in pain! Lots of pain for 4 hours straight! And isn’t God’s timing amazing? Dr. Kays was just getting back from an extended vacation; it was his first shift back.

Ella Renae West was born into the world only a few hours later after they attempted to slow down the birth! And our long journey started…

It’s just hard to believe that we are sitting here at home 1 year later with a beautiful little miracle.

We praise God for taking us on the road less traveled. Each day, He surprises us with how He uses our story to bless others as well as ourselves. Sometimes we wonder why He chose us and then we have to stop and remind ourselves that although it doesn’t always makes sense, He knows best. We feel honored and privileged that He has entrusted Ella into our care. May we always strive to please Him in all we say and do.



 
Jul
22
    
Posted (Tina) in All Posts on July-22-2008


Ella was having a good time today rolling around on the carpet. She does not have the skill to roll over by herself, but you can tell that she wants to do it. So I was guiding her and helping her get to certain positions.

Also, she is getting more skilled at taking the binky in/out of her mouth on her own. While I was photographing her, she even offered the binky to me!

Her PT appointment went fair today. The therapist and I spent more time discussing strategy. I tried to stress that I think the way that we are doing exercises is too much for Ella. You have to be tricky with her. The key is going so slow and breaking down simple physical tasks to the point that Ella does not realize that she is working.

For example, we want to teach her to roll over. When she is on her side, her arms and legs need to be in certain positions to roll over. Right now, the positions are not a natural thing for Ella. So I suggested that I could try working with her each day to ensure that her arms and legs are in the right position even when she is just on her side, distracted by her toys. With repetition, Ella will start to lay in that position more naturally. If she does that on her own and her body is in position to roll, she may even try it more herself. The therapist was very receptive and mentioned that she might even give Ella’s prior PT a call to discuss strategy too. She admitted that she does not have a lot of experience with medically fragile children, so the amount that you can “push” the kid to do is a lot different. Also, she wants to be respectful and learn Ella’s limits.

I really like the PT and want to continue working with her. Ella likes her too! I think we just got spoiled being in Gainesville and having a PT with so many years of experience. But at least Ella’s prior PT is open for discussion via phone on ideas and input to help Ella move forward. I think that will be a great resource for the new PT, especially in these early days.

Another CDH baby that we only know via their blog was readmitted back into the hospital last night. She is only 4 months old and reherniated – – her prosthetic diaphragm patch gave way and the contents of her bowel moved back into her chest causing a bowel obstruction. Praise God that the surgery went well today for her and that she is recovering.

This is always something that we worry about in the far recesses of our minds. As this other CDH mom shared on her blog, “We’re so used to seeing her smiling and playing and to see her looking sick and helpless again is heartbreaking.” This is my worst nightmare – – to have Ella get sick or reherniate. Every day when she retches, I’m always saying a silent prayer for no reherniation (she retches HARD) and also no micro-aspirating into her lungs.

We feel so blessed that she has been home from the hospital for nearly 6 months now and has been able to remain healthy. That is our continued prayer for our little miracle who will be turning 1 year old this Thursday. Our birthday wish is for continued health this upcoming year, so that she can grow and remain strong.

Looking at the little face below, I can’t imagine life without her. And just to think: a year ago today, I had just arrived in Gainesville and Josh and I went to see Ratatouille in the movie theater while Ella kicked around in my belly!