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What a beautiful sunny Saturday morning in Colorado. Grandpa came over for breakfast, and we spent some time on our deck soaking in the weather. He brought his two “kids” over and they enjoyed running around in the backyard.
After dad left, I did some yard work and was only able to complete the front and some of the backyard before it began to rain / hail. Typical Colorado spring weather though: nice in the morning with thunderstorms in the afternoon.
While it rained outside, the Bun flexed her leg muscles in her exer-saucer. She has really got the hang of being in there now and is doing great pushing herself up. Yup…just a preview of her standing on her own someday!
Ella continues to experience a good amount of retching which doesn’t get any easier to deal with, for us, or her. Like Tina said yesterday, we did notice a decrease in her retching while out in California. Thinking that it may have been related to the increased humidity, we broke out the humidifier we had previously used in her room.
We have used this cool mist humidifier in the past, but it seemed to increase the amount of Ella’s secretions which would only make the problem worse. It has been awhile since we used it, so maybe things are different now. We put it out on the table this morning, and next to her crib throughout the remainder of the day, but we didn’t see much difference in her retching. I may just run it in her room over the next week to see if there is any improvement. Here’s hoping.
We do have a prayer request this evening. There are a lot of big life decisions that we’re trying to flesh out relating to Tina’s future work, getting a nanny, etc. Our hearts desire is to be obedient to what the Lord wants, and we are prayerfully seeking him in these matters. If you would pray for wisdom, discernment, and direction for us in the coming days and weeks, we would appreciate it.
Thanks to all of you for continuing to follow us on this journey. We savor all the love and support shown in comments you make and emails you send. We are blessed to have you here with us.
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It was nice and warm in Denver today. I had two doctor appointments, so the Bun joined me.
Ella behaved herself for the morning appointment. She stayed in her stroller and entertained herself. That was good since I was getting 4 moles shaved at the dermatologist. The litocaine shot hurt like nobody’s business, but I had the babbling of the Bun in the background to remind me to suck it up. Ella has been through so much that anytime I think that something hurts or is painful, I am reminded that she has been through way worse. I’m praying that the biopsy comes back with no abnormal cells, but time will tell.
We had a short time between doctor appointments and I needed a few items at Target. It was in the same area, so it seemed like a good idea. First, we spent some time in the parking lot. I changed her diaper and fed her while she watched a video. Then, we decided to go inside. We were in Target when she started to get fussy. It seemed like she had gas. That was confirmed when I heard lots of tooting followed by a blowout. The meltdown continued even once she was changed; she was not letting down. When she works herself up, she also starts to retch a lot. I tried investing a few minutes to see if I could calm her down, but that wasn’t working. She seemed tired and cranky. So, I quickly tried to get the few items I needed and ran towards the check out line. All of this occurred over 20 minutes, so she was getting exhausted from crying so much. Even on 2 liters of oxygen, her color did not look great and she was wet with sweat. I felt the weight of people staring at me and it was uncomfortable; I felt like they did not understand. Once we got to the car, I had about 15 minutes before my next doctor appointment so I held her in the air conditioned car and she fell asleep.
When we had to start driving again, she melted down once more. This time though, she calmed down within a few minutes and seemed like she wanted to rest more. It was not a normal nap time, but considering that we were on a field trip, I was not about to stop her. She rested in her stroller during the next doctor appointment and a few minutes of shut-eye seemed to help a tremendous amount.
Thankfully, we did not have any more dangerous diapers on our errands. However, she made up for it this evening with 2 more and one that included changing clothes and the crib. Yikes! But at least we are at home, so it makes the episodes a bit easier to manage.
On another note, her oxygen has been higher since we returned home. We assume that her body is still acclimating back to Denver, but time will tell. She is currently on 1 liter when awake and around 650ccs at night when asleep. Another adjustment: the humidity in California seemed to give her a reprieve as we noted that her retching was less frequent each day. Sure enough, as soon as we arrived in a dry zone again on the drive back (St, George, Utah), the retching came back full force. I would have never guessed that humidity played a part.
We’re hoping for a restful weekend and plan to try and get out with the Bun to enjoy the sun.
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It was a mellow day with the Bun. We went on a walk again this morning to soak up the sun and take a glance around the neighborhood. Ella enjoyed the stroll as she kicked her legs with excitement.
I had a rough morning. Like I’ve mentioned before, sometimes the weight and gravity of Ella’s condition and everything surrounding it can get the best of me. I continue to strive forward but certain days are tougher than others.
The OT session was productive today. We discussed a completely different strategy for Ella’s feeding goals. Right now, we have been using a method of therapy that works on the tactile stimulation along with exposure to foods. Moving forward, we discussed only focusing on the tactile skills and leaving the foods for the future.
Apparently, tactile stimulation is connected closely with feeding skills (she needs those skills before she will really eat). The focus is to desensitize her hands, feet, mouth and lips using various exercises. Currently, we are using dry objects: pinto beans, rice, feathers, beads, etc. We need her to enjoy having things in her hands and around her mouth. Once those go well, we will move to having her play with foods: cooked pasta, whipped cream, jello, baby food, etc. Ideally she would then take the foods she is playing with and explore putting them in her mouth. This way, putting the food in her mouth is on her terms.
This new plan is good for Ella because the feeding sessions are mostly meltdown sessions. She gets so upset with us trying to “force” her to eat foods. With tactile stimulation, it is more like play time with her toys so the stress level is not nearly as high plus it still moves us towards our goal of feeding. It is a good plan for me because the feeding therapy sessions are stressful for me. It is hard enough having to give her a bath and brush teeth much less trying to put food on her lips and in her mouth. I don’t enjoy doing things that make Ella melt down, cry hard and require more oxygen as she is turning blue. Emotionally, these types of instances wear me out during the day. Finally, it is a good move for the occupational therapist too. She wants to be more hands on with Ella but has had limited opportunities. Initially, Ella didn’t know her well enough or trust her. Focusing on the tactile stimulation exercises will give the OT a chance to progress with her relationship with Ella. For once, they will do something together that is fun! This trust will help us to progress to the next steps.
I’m excited to try this new strategy. We came to this plan in the middle of the session today and promptly walked upstairs and started in with the new routine. So far, it was working. Ella was having a good time with her therapist while doing the exercises. Bummer that I did not have the camera present!
I did have the camera present for the PT session, as usual. It did not go as well as yesterday’s session, but was still productive. Ella worked hard!
This afternoon, I had cabin fever so I took Ella on an errand this afternoon. She loved it – got very happy and smiley. It is a lot of work to take her places with all her various pieces of equipment, especially solo, but her excitement makes it all worth it!
I love how Ella grabs her hands and puts them together. Often times, she just sits and stares at them. When we were visiting a close friend last week, she pondered, “I wonder what little Ella is going to do with those hands”. It certainly does make you wonder as she sits and looks at them grasped together. One thing is for sure, it will be fun to see how that part of her story unfolds.
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It has been a rough adjustment back into the routine of life, as Ella tried to take several naps yesterday. I resisted the temptation even though she was cranky most of the time. But, it paid off. She slept solid last night from 9:30pm – 9:30am. Thank goodness!
I weighed her this morning and she came in at 11.05 kilos (24.31 pounds). So, she has not really gained weight for the past couple of weeks. Our next appointment with her pulmonologist is June 9th. We are going to try and sit tight without adjustment to the food until that date. We want to get an update on her SVC and discuss the possibility of reducing or eliminating her diuretics. If we increase the volume of her food, that may introduce a new variable. She had such great weight gain for March, April and the first part of May, so I’m not too concerned about sitting tight for another week or so.
It was sunny and 65 degrees this morning, so we went for a walk around the neighborhood. Ella was still trying to wake up and face the day.
When we returned, it was time for the OT session. We tried the typical peaches, but then also tried whipped cream. (For those that were tuned in last week, we tried whipped cream on a stop to Starbucks during our road trip to California). Even this morning, it seemed like she tolerated the whipped cream more. The OT thinks that it is likely the airy texture, so we may branch out and try some other types of food besides baby food (e.g yogurt, chocolate mousse, chocolate pudding, etc.). Ella definitely let us know when she was done with today’s session. She started to get fussy, and it seemed like she was really tired.
Once Ella took a nap and woke up, we had a successful physical therapy session. The Bun was in a great mood and did not fuss one time. You can tell that she is getting stronger and tolerating more and more exercises. The PT is able to push her to do more each time.
After exploring her tongue and making faces (see the series of pictures at the bottom of this post), she spent a good amount of time on her belly. We switched to her belly because Ella rolled from her back to her tummy on her own! She is starting to do this a lot on her own. We noticed it last week on vacation when we would place her on her blanket to play and when we would place her in the crib. Now, she just has to learn how to roll back onto her back…she is still mastering that technique!
Last week, we also noted her pivoting and turning around in a circle while on her back. Well today, we tried it on her tummy by using her laptop computer as a motivating factor. Sure enough, we would place it just out of her reach and she would bear weight on her elbows, twist and turn herself just enough so that she could push one of the buttons on the laptop computer to initiate the music and lights on the screen. We went around in a circle a couple of times. She worked really hard, but didn’t know it because she was having such a good time.
Aside from therapy appointments, it was a quiet day with just the Bun and Mom. We missed hanging out with Daddy and are already looking forward to this weekend.
Psalm 40:11 (NIV)
Do not withhold your mercy from me, O LORD;
may your love and your truth always protect me.
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Well, we had one more day to recuperate from our trip and unpack which was good. Ella’s schedule was light and Josh decided to take one more vacation day.
Through the state approved Early Intervention Program, we are required to have annual assessments. This is where the the case manager and therapists all come together to discuss goals and strategies for the upcoming months. In addition to the physical and occupational therapists joining this morning, we also had a speech therapist present.
We are going to shoot for a goal of 1x/week for speech therapy. We’re interested to see how Ella responds since it will be new for her. I’m expecting a response between physical therapy which Ella enjoys and occupational therapy which Ella greatly dislikes. She probably won’t love it since it requires her hands and mouth, two areas of heightened sensitivity for her. But, it does not involve eating or drinking which has to be the most challenging of all tasks for Ella.
Other than that, we are just soaking up the last few minutes of the evening as a family. We’re back into our normal routine tomorrow!
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The picture above says it all. Even though we added an extra day of travel time on the way back to Colorado to break up the driving, we still are wiped out. We originally planned to recover at home today, but that didn’t happen.
The drive went without incident, except for some rain showers. This made for some beautiful scenery though and a very active Colorado River.
The last couple nights have been rough from a sleep standpoint because Ella’s schedule has been totally off. We tried putting her down at 11pm last night, but she didn’t settle down until 1:30am. We’re hoping tonight she gets on track because a sleepy Bun is a cranky Bun. I’m not too keen on not getting any sleep either ;-).
Good news is that as I type this, Tina is putting Ella to bed (9:30pm). Hopefully she’ll sleep well in her normal environment and we’ll all get some good rest.
We had a great time escaping to California to see family and friends, and thank God for watching over our travels.
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The drive from St. George, Utah to Palisade, Colorado (just past Grand Junction, Colorado) today was mostly uneventful. Last night, we decided to break up the drive home since we feel wiped out. That was a good call and tonight we are enjoying a glass of wine and resting before the last part of our drive home.
So besides the serene scenery, we did hit a bad storm. As the rain started to fall, we noted a car flipped over and another had run into the median. Within a few minutes, the rain picked up. The rain drops were so large and so loud. It was a fierce storm. Shortly thereafter, we hit hail. Luckily, it remained pea-size to nickel-size, but it was blasting the car. It was so loud inside the car and we were not sure if the car was sustaining damage or not. Then, in the middle of the storm, Ella got a build-up of secretions in her airway. It was scary enough that we had to pull over quickly, lean over the seat into the back, increase her oxygen to 2 liters, undo her car seat straps and pull her into the front seat area. From there, we leaned her over (with her mouth toward the ground) so that the secretions could fall easily out of her mouth as she was crying. There was such a build-up of secretions that she could not manage and they were starting to block her airway. She was having trouble breathing without inhaling the secretions. It was a close call and all of it happened while the hail and rain was beating the car. It was an intense moment.
We praise and thank Him for taking care of us as we make the journey back home. We’ve had such a great time hanging out as a family. Looking forward to rest tonight and a beautiful drive through the Colorado mountains on Memorial Day.
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While we were packing the car, Ella was doing her morning exercises. Gotta love pics of the Bun rolling over. So awesome to see the progress she’s made in this area!
Well, the plan to leave California at 10am was pushed to 1:20pm. It was nice to take our time and we made it to St. George without incident. After the drive, we also decided we’re going to take one more day of vacation by staying tomorrow night in Palisade, CO. This will break up our last 12 hours of driving over two days.
Ella did good on the drive except for the couple times she became overly tired and decided to get cranky about it. After a nap each time, she snapped out of it.
Hoping the rainy / stormy weather doesn’t impact our drive too much tomorrow.
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It was our last day of relaxation in Southern California. The weather cooperated all week for us – – it was absolutely perfect.
We spent the morning relaxing and followed up in the afternoon by running errands. We had to make a run to Trader Joe’s for some favorite coffee and wine. Also, we made a run to exchange some oxygen tanks for the drive home.
Then, we went to see Aunt Shannon, Uncle Rick and the cousins. Since Ella can’t be around kids, we displayed her through the patio door. This way, her cousins could take a peek at her. That was a fun time!
Toward the end, Ella was having some good laughs with Uncle Rick. All in all, a great time in Southern California. We miss it!
On a final note, many have asked about Ella’s oxygen requirements at sea level. She is definitely requiring less: about 250ccs at night and 500ccs during the day. At home, she is about 250ccs higher: 500ccs at night and 750ccs during the day. So although it is less overall, I actually thought that the change might be more significant.
Our plan is to head out late tomorrow morning and start our journey back to Colorado. Our first stop is St. George which will likely take about 8 hours total with stops. That is if we don’t run into really bad traffic. After all, it is Memorial Day weekend and we have to take the route through Las Vegas.
We’re hoping and praying for minimal traffic and safe travels. If Ella was half as good as she was on the drive to California, we’re in good shape.
Psalm 62:5 (NIV)
Find rest, O my soul, in God alone;
my hope comes from him.
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