Our post is going to be short and sweet because Grandma Eusey is here to visit.

Ella had a good day. She enjoyed her physical therapy, as usual. She is getting so much stronger, as far as putting weight on her arms when she is on her belly…so good to see.

Life is a Journey

Life is but a stopping place,
a pause in what’s to be,
A resting place along the road,
to sweet eternity.

~Anonymous

Ella slept well last night – she only woke up twice. Although she was wired until 11pm. She is turning into a night owl!

The cat woke me up around 4:30am and I could not fall back to sleep. It was annoying. So 2.5 hours later, I was finally tired enough to dose off.

Ella and I ventured out this afternoon to visit Dr. Perry. It was great to catch up with him and fill him in on all the details since the SVC procedure. He thought she looked fantastic and was impressed with her recent weight gain. This morning, she weighed in at 10.17 kilos. He showed me her growth chart…drumroll, please…and for the first time ever, Ella made it into the “normal” growth curve. Although it is near the bottom (the 25th percentile), it is the first time that she has ever been in the curve. Very good progress for the Bun.

If Ella remains stable, Dr. Perry feels comfortable waiting until the end of July to see her again…near her 2 year birthday. That is HUGE. We normally visit approximately every 6 weeks. And if you remember, her pulmonologist wants to see her in early June. Another long stretch for Ella. Most of it will depend on her appointment on April 16th with the cardiologist for her chest xray and echocardiogram to check on her SVC. We’re praying she checks out well, that she can stay healthy and keep on a steady track of weight gain with no fluid retention.

We’re excited to have Grandma Eusey come and visit us this week. She shows up tomorrow and is dying to love on the Bun! It should be a good time.

Yesterday (Saturday) was great with Ella. She was happy and feeling good. We were having the itch to go out…out with the Bun. We’re not really supposed to since it can expose Ella and even the slightest cold or virus can make her very sick. But, we have been sequestered so much over the past 20 months, we just decided that we wanted to take the risk. So, we went to our favorite breakfast place. Thankfully, there were hardly any children and no one in the vicinity sounded sick. That was a relief.

Ella had a great time just sitting on my lap and people watching. Here and there, she would kick her legs and smile. But for the most part, she was content with her frog and binky just snuggling with Mom. I ate with one hand and enjoyed the pancakes with fresh strawberries and whipped cream. Yum! It just felt good to go out as a family. Before the meal ended, our server came to our table to inform us that an anonymous person had paid for our meal. We were stunned. Apparently, this man told the server that he feels blessed and likes to pay for someone else’s meal each time he goes out to a restaurant. So he asked her to point out her tables. And there you have it…it was such a nice surprise and definitely not expected.

Then as we were about to get up from our table and leave, three ladies came up and asked about Ella. They wanted to know more about her condition, why she was on oxygen and more importantly, they wanted to pray for us and for healing on Ella’s body. Wow. So here we were in the middle of our favorite breakfast place, being blessed by three other believers that felt prompted to pray for our family.

It’s been a rough time lately…emotionally. Sometimes walking through the valley can get the best of you and even though you know the truth about God always being in control and always being with you, it’s easy not to “feel” it. We were discussing that just before breakfast and then both of these events happened. We just felt it was God’s way of letting us know in a tangible way that He is still there. He knows our struggles with Ella and He has a plan.

Finally, we had our date night. We have not been part of a church since we moved back home. Mostly because we cannot take Ella to church with us. But I felt prompted to look for churches that offer Saturday night services. We found one online and just decided to try it. The message was poignant and hit both if us, but especially me. Yes, I was crying throughout the service. Again, we know the truth but it is refreshing to hear it. It was like drinking water from a spring after walking in the desert for months. We’re not sure if we are called to continue attending this particular church, but really enjoyed the service and I could see us attending again. Just an amazing day of feeling God’s hand in our life and Him making it abundantly clear that He has not gone anywhere and He is going to see us through even the toughest of times.

Unfortunately, Ella did not sleep well last night. Josh tried to give me a night of rest, but it was so much, that we ended up both taking turns. Ella woke up several times and then was just awake, wide awake from 2:30am – 5am. What? We tried everything to get her to be tired, but she was wired. It was weird.

Along with a rough night, we have noticed that Ella’s numbers are intermittent. It does seem like her oxygen requirements have creeped up slightly during the day and at night over the past 5 weeks. Not a tremendous amount, but the difference is there. Also, we did decrease the Captopril and then discontinue the medicine about 5 days ago. We’re not sure what impact that is having on her body. But her heart rate seems to be higher at times too. This is a bit of uncharted territory for us. We’ve seen all these signs before and even seen them worse in Ella, but not quite with this exact presentation. So, we’re trying to stay in tune to what might be going on with her. We’re hoping that she sleeps tonight.

And as we retire for the evening, we’re reminded that we are called to trust Him.

Trust in the Lord
The wind’s not always at our back,
The sky is not always blue.
Sometimes we crave the things we lack,
And don’t know what to do.

~Anonymous

We had a great day with the Bun, and would love to share the details but we’re just too tired tonight. We’ll fill ya’ll in tomorrow.

G’Night all.

Well, we got around 10″-12″ of snow at our house yesterday. But the sun came out in full force today and started melting it away.

Ella was having her own version of melting away, as usual when it came to feeding.

She slept well again last night, only up a few times. The extra sleep is so appreciated by Mom! Also, she is continuing to have good weight gain. This morning she was at 9.96 kilos. She’s been gaining .2 to .3 kilos each day. The extra weight gain is very good for her little body.

Tonight, it is just me and the Bun. Kelly went out with a friend to dinner and Josh is at a hockey game with Grandpa!

Looking forward to the weekend…

Thankfully, Ella slept last night….really well. Her pulse oximeter went off around 3am. A couple of other times, she woke and coughed. But I waited and listened via the monitor, and she went back to sleep on her own! The last two nights have been better sleep than previous weeks/months. Maybe Captopril being gone is a big part of the sleeplessness, like we thought. I can only hope that this is a new trend. I can tolerate her waking a few times per night, but more than that for an extended period of time starts to get very old…especially when it seems like there is no end in sight.

The better part about sleep last night is that her oxygen requirements were improved over the previous night scare. I’m not sure if her body is still adjusting to things, but it seemed to rebound. That was a welcome surprise as we were prepared for the worst. We’re still watching her closely, but are hopeful that fluid is not being retained.

It was blizzard, snowy conditions in Denver today so both of her therapy appointments were canceled. Our appointment with Dr. Perry was canceled too. Instead, we get to see him early next week. So, Kelly and Ella dreamed of warmer, sunnier places and tried on hats while playing to escape the reality of the outside weather.

For tonight, we are watching the snow accumulate and blow around outside while we rest in our warm house…thankful.

Philippians 4:8-9 (NIV)
Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.

Ella only woke up three times last night, which is a great improvement.

The only bummer…her numbers did not look good. She was requiring more oxygen than normal to keep her saturations high and heart rate was a bit higher too. Here we were starting to think that we were out of the woods on the fluid issue….not so fast!

One huge factor that likely contributed is that we discovered that her food pump was defective. We only changed it out at the end of last week and started giving her the amount of food she was supposed to be getting. Well, that was likely a big increase for her little body. We weren’t seeing any negative impacts over the first few days, so we thought she might be okay. At this point, nothing is definitive. We just need to watch her closely.

Today, we had to go back to the hospital for more appointments. It seemed like she was more fussy and cranky than normal (again, another typical sign of distress for her). We were there for a few different things, all of which caused meltdowns and required extra oxygen.

First, we got her hearing tested. They confirmed what they noted last time: she has negative pressure in both ears. Because she was sick last fall (was still in-patient at the hospital) and did not respond for some of the testing, they considered the test inconclusive. We had the same audiologist test her today. She noted that her findings are consistent with what she noted last time, plus the findings were conclusive today (she was able to do more testing). This means that Ella can hear high pitch noises, but does not hear low to middle grade pitch sounds. It might be fluid accumulation in the eustachian tube (the tube that goes from your throat to your ears) or may present a form of hearing loss. They want it monitored by her pediatrician and to have her re-tested in 4 months.

So, negative ear pressure and the eustachian tube are all part of your middle ear. The middle ear is an air-containing cavity between the eardrum and middle ear which contains the three ear bones (malleus, incus & stapes). This cavity is connected to the nasopharynx by the eustachian tube. The eustachian tube aerates the middle ear cavity. Disease in this area of the ear will cause a “Conductive Loss” or loss of sound loudness. This type of hearing loss is most commonly found in children and presents as an ear infection or ear fluid. Based on Ella’s history, it may be a form of hearing loss.

Interestingly enough, I have middle ear challenges too. The stapes is one of the three bones in the middle ear. It transmits sound from the incus to the inner ear. In a disease called otosclerosis, it becomes fixed and does not transmit sound as efficiently. A stapedectomy is a procedure which removes a portion of this bone and places a prosthesis to transmit the sound (I had surgery in August 2006). It is amazing because as soon as the prosthesis was in place, I could hear perfectly fine. Although my condition is very different from Ella’s, we are both girls with middle ear issues! Only time will tell how her condition will play out.

We tried getting a blood pressure reading twice yesterday at Dr. Abman’s appointment, but Ella would not tolerate it. Since we have discontinued Captopril, we want to watch her blood pressures (Captopril is a blood pressure reduction medicine). After a meltdown today too, they suggested that we go out of the exam room to try it (different scenery). Then, I suggested walking around, with no stranger interaction (she still melts down with strangers and assumes that they are going to hurt her in some way). So, we were fortunate that the schedule was light. We walked the hallways in her stroller for several minutes while she calmed down and finally got a blood pressure reading: 109 over 71. This is a normal, good blood pressure reading. It will be interesting to track as the days and weeks continue to see if the Captopril was making any impact in her blood pressure.

Finally, we had to end our time at the hospital by going to get labs. As usual, she was not happy and I cannot really blame her. It is so tough for any parent to watch your baby be in any type of pain, be poked with needles, especially when these important tests/pokes/procedures are important and necessary for her. You feel like you are inflicting the pain on her directly yourself, and it is tough because she doesn’t understand. She simply holds her breath, bears down, and cries really hard. After increased oxygen and lots of consoling (10 minutes), she can finally calm down. It can be scary because she won’t breathe…and my greatest fear is having her pass out on me.

Even after the blood lab, I fed her and she would not even tolerate the formula going right into her belly via the g-tube. This makes it worse, of course, because she ends up pushing all the food back up into the syringe and it just makes the process longer. All in all, she had enough of the day and was letting me know it!

After 2 hours of her melting down at the hospital, I was worn out. Clearly, she was too because she fell asleep in the car and took a cat nap on the way home.

It is days like today that I can get overwhelmed with all my emotions surrounding Ella. It is so tough to have a medically-fragile child that is developmentally behind. It makes me hurt for her, for us. Our experience is so different than most because of the road she’s been down. And although I know it is all part of His plan, it doesn’t make the raw emotions of the loss feel any different.

It will be interesting to watch her numbers tonight. I’m hoping that last night’s numbers were a fluke, but based on her over-the-top meltdowns today, it might be an indication of fluid retention. When she has little to no tolerance for anything, it usually means she is not feeling great.

We go to see Dr. Perry tomorrow and look forward to giving him an update. He has not seen her since late January, way before her SVC procedure. We’re continuing to pray for another restful night and that we will see no fluid retention and no negative impacts from discontinuing Captopril.

Exodus 14:14 (NIV)
The LORD will fight for you; you need only to be still.

Ella picked her night to sleep last night. She would not go down until 11:15ish, but then she slept solid until 7am. It was great!

We had a wonderful follow-up appointment with Dr. Abman today. Ella was not in the best mood. She was clingy and melted down several times. But, he was pleased to see the great progress with her, despite her tantrums. He is interested in seeing how she does over the coming weeks. More so, he wants to see her chest x-ray and echocardiogram scheduled for April 16th with Dr. Fagan. This will show how well her stents are working and let us know if the flow is the same, better or worse. We’re hoping that Ella can continue strong.

Dr. Abman agreed to discontinue the Captopril! We’re excited. We feel like this is another great step in the right direction for Ella. We haven’t noticed any negative impact over the past few days. Since Captopril is a blood pressure medication, that is something we will be watching closely to see if her baseline changes once she is off Captopril for a period of time.

I asked about the diuretic she is taking – aldactazide. Josh specifically wanted to know the long term impacts around the use of the diuretic. Dr. Abman noted that it should not make her nephrocalcinosis on her kidneys worse, which is good. Given her current weight and the dosage she is taking, he confirmed that it is having minimal therapeutic impact right now and will have less and less as she gains more weight over the coming weeks. This, in combination with no Captopril, means that if she can continue strong over the next couple of months, there is a chance that we can look to get rid of that medicine too!

This morning at home, Ella weighed in at 9.86 kilos and this afternoon on their scale, she weighed 10 kilos. She is up to 1137ccs of fluid per day which is giving her more than adequate calories to keep her growing. So, he wants us to hold steady with her food until we have the echocardiogram and chest xray to ensure that there is no fluid build-up.

He was a bit concerned that Ella is still coughing each day. We’ve always noticed it since the Captopril, and since we will be discontinuing it, he wants to see if she continues to have a chronic cough. If it does not go away on its own, we may need to investigate further. It may indicate some asthmatic symptoms and he mentioned that a medicine such as Singulair might help. For now, he doesn’t want to add any more medicines. He simply wants us to monitor the cough and report back to him.

We’re in a bit of disbelief. Tomorrow is one month since the procedure and aside from Ella melting down in even the minor things (which seems like almost always right now), she is doing so much better on the medical front. And we have not had a breakthrough like this ever for her. It has always felt like things have been tough and not worked in her favor…and although she’s overcome many things, its taken months and weeks to overcome. This was the first procedure where she rebounded quickly and immediately started doing better. So, we’re in a bit of disbelief, but very thankful. And we just pray that she can continue on this path over the coming weeks, so she can continue to grow stronger.

1 Chronicles 16:9 (NIV)
Sing to him, sing praise to him;
tell of all his wonderful acts.

Ella woke up only 4 times last night between 9:30pm and 7am – that’s pretty good for her. I know I appreciated the sleep. Since she was well rested, she had a good day.

Because she has so many doctor appointments this week, we arranged for occupational therapy and physical therapy today. As usual, she enjoyed her physical therapy session. However, her independent spirit and lack of desire for eating led to a melt down for occupational therapy, so they went to her room to work on tactile stimulation instead. Who would have thought that a bath of pinto beans would help a child progress? I agree, it looks strange.

Ella weighed 9.8 kilos this morning. We’re still seeing good weight gain with solid numbers clinically, so we’re excited to see if we will get to discontinue the Captopril medicine tomorrow. Also, we’re excited to see Dr. Abman, her pulmonologist, to show him how great she has been doing since her SVC procedure.

Psalm 23:1 (NLT)
The Lord is my shepherd;
I have all that I need.

Josh was nice enough to let me wear earplugs and sleep straight last night. Wow, it felt great to get solid sleep.

Ella wasn’t too bad overnight. Fortunately, we went to bed early and the first time she woke up was 2:30am, then 4am, 6am, and a bunch up until 8am. The first few solid hours of sleep held Josh over for the rest of the shift.

The Bun weighed 9.7 kilos this morning, which is a steady gain since we increased her food late last week. On another positive note, we have not noticed any negative impacts from decreasing her Captopril dose to 1x per day. We were watching for fluid retention. And although her weight has gone up steadily, we think it is true weight based on her numbers staying good and her clinical behavior. For example, I did get up once last night to use the restroom and decided to check on her. Her heart rate was 98 and she was saturating 99 on 400ccs of oxygen. Those are great numbers for the Bun. This means that Dr. Abman will likely discontinue the medication after our appointment on Tuesday afternoon!

Speaking of her appointment on Tuesday, she also has an appointment on Wednesday and one on Thursday. We have a busy week ahead of us!

So today, we had a lazy Sunday at the house while we cracked open the windows to enjoy the 70 degree weather. Of course, tomorrow is supposed to be mid 30s with snow. Gotta love Denver!