The gift of hearing

Ice cream after her eye appointment and before her ear appointment

Anellah was fitted with her hearing aids this week. I had had quite a few reservations about getting them since it was one more thing. Another piece of equipment to care for, and change batteries for, and replace when lost, and one more thing to remind others that Anellah has special needs. But, like most things, once we finally took the step, her improvement was amazing! I wish I had taken a video as her face lit up when she heard soft sounds clearly for the first time. She started singing to herself and said, "I'm listening to my loud voice." The fact that they are purple with glitter and come with stickers to decorate them with is simply the icing on the cake! Here's to hoping she still likes her new ear jewelry after the novelty wears off.

Checking out the colors before putting them on

"Ear braces"

Bright faces bright and early at the hospital

The endoscopy that Anellah had last week went well. She still has trouble waking up from anesthesia. Not that she can't be aroused but rather that she hates the feeling of being so out of control and becomes upset and combative. That piece is difficult because it's hard to console her but I am hoping that as she becomes older and we can talk about this feeling ahead of time and make a plan for it, the process will become more smooth.

The results of the endoscopy were decent. She had a few more varices (we were hoping for none) however the doctor did not seem concerned as they were not worse than before. He plans to do another endoscopy in one month (April 17th). We did not have to stay overnight in the hospital although we were there from 6am until after 7pm. Coming home to sleep in our own beds, however, was a great relief! I am also thankful that thus far we have been able to schedule all endoscopies on Fridays when Anellah doesn't have school so she has not missed a single day due to these procedures!

Getting ear impressions so her hearing aids can be made

Earlier this week Anellah also was fitted for hearing aids. There has been some mild concern about her hearing since birth. We are not sure if it has gotten a bit worse or if the issue is just more evident now that she is in school but it has become clear that some hearing aids would be helpful. She has been wanting braces for her teeth for some time so I told her that hearing aids are braces for her ears. So far she has bought it. She chose purple glittery aids.

Endoscopy Scheduled for Friday

"I tied them all by myself!'

This Friday Anellah will have her next endoscopy and her doctor will see how the vessels in her esophagus look. If there are no more significant varices (ballooned sections) then we will wait three months before having another endoscopy. If the vessels look worse than last month then we will return to the possibility of surgery. I believe that God performed healing in her body between the first and second endoscopies, explaining the significantly different results. We are praying for continued healing in her body so that surgery is not the only option. When the procedure was originally scheduled I was told she would stay overnight again but she HATES sleeping at the hospital (does anyone actually LIKE it?) and always ends up overly tired. Usually getting so tired makes her susceptible to other illnesses and her hospital stay is followed by getting sick. This time I was able to talk the doctor out of having her stay overnight so the plan is just to stay for the day in order to be observed.

On a day-to-day basis Anellah is doing great! She is herself again: cheerful, playful, and creative. She continues to love kindergarten and is beginning to learn to read. She has a special friend at school whom she refers to as her "best friend forever." The two even hold hands on the carpet during story time. It is fun to watch her develop her own friendships rather than just being friends with the children of my friends.

The weather has been unseasonably warm so we have spent lots of time outside from setting up a "treehouse" (ie. area under a tree that the kids pretend is a house)

"That is a BIG tree!"

to gardening (ie. Mom and Dad do the work while the kids dig random holes and get to put the seeds in once in awhile)

to going on "hikes" (ie. slow walks in beautiful places).

I have let Evelyn cry a bit more at night and it's allowed both she and I to get more sleep. In fact last night she slept all night!! Getting more sleep has helped me to be able to get a bit more organized since I can get up before the kids get up now and has definitely helped me feel more sane.

Room to Grow

I haven't been spending very much time writing blog posts lately...although ideas float around in my head. The reason- I have three kids. I guess I didn't really expect three to be much different than two. But it has proven to be quite a bit different. Of course some of the difficulty I'm having stems from the fact that I'm on the 6th month of sleep deprivation...but we're working on that!

Despite all the "busyness" of having a house full of kids ALL day, EVERY day I'm still trying to live joyfully and obediently to God. A lot of times that looks like a zillion quick pra

yers throughout the day of, "God help me to have grace...patience...wisdom...compassion...etc." I'm not doing a fantastic job but I'm doing my best. And I know once sleep becomes more consistent I'll feel a little more sane.

In the meantime I know that God is stretching and growing me by leaps and bounds. It's during the struggles that I can choose to either become bitter and shirk away or sink my roots down deep and GROW.

More Insight

Waiting for pre-op

The girls and I were in the car and driving to Seattle at 5:20 this morning. I was surprised all of us stayed awake for the entire drive. Check in went smoothly and all of the staff were amazing; so adept at letting the patient dictate the pace! Evelyn tried hard to steal the show with her big cheeks, bright eyes, and radiant smile but Anellah's sparkle didn't let Evelyn take over entirely. I was surprised that Evelyn and I were invited right into the Operating Room where Anellah's 30-something surfer anesthesiologist agreed with Anellah that she could stay awake the whole time and cheered her on as she struggled to keep her eyes open while the anesthetic took over.

Evelyn and I left to get some shut-eye for her and breakfast for me. I intended to do a bit of reading and walk out to the car but I had hardly started eating when my pager went off calling me back to the waiting area, the doctor was already done! Her doctor was pleased to have visualized much better findings than had been expected. He treated a few of the varices (bulged vessels) and noted that they were all in the esophagus (which is better than in the stomach). Whereas he went into the procedure considering not if but what type of surgery would be needed in the future, he came out of the procedure with the opinion that surgery may not be necessary! He explained that if other vessels in Anellah's body around her spine, kidneys, and belly button open up to relieve pressure as the ones in the esophagus did that will be the body's way of doing what a surgical stent would do. I questioned the safety of letting this happen and he informed me that it is entirely safe. He also explained that her liver is currently functioning well, it just does not allow blood flow through it very easily but as long as some blood is still flowing through it and the rest of the blood is naturally rerouted around the body Anellah will be safe.

We discussed what may have happened last month and we came to the conclusion that it may have been related to a viral illness. While Anellah was in the hospital in Spokane she became very sick with vomiting and diarrhea which stumped the doctors who did not expect this reaction after the procedure. Today's doctor and I put it together that perhaps she was starting to get sick on Christmas day, this illness irritated the esophagus causing the rupture of the weakened vessel in her esophagus and the bleeding she experienced. The life-threatening side effect distracted us from the fact that she had a virus just like a lot of other people have been getting this winter.

As far as long term outcomes, they are looking much BRIGHTER than they were. She will have another endoscopy (the same procedure she had today) in about one month. The findings of that procedure will determine when she will have another procedure, if they have not returned then surgery may not be necessary because it means her body is accomodating this higher pressure. Although surgery is still a possibility it is not necessarily inevitable and the discussion of transplant has moved to the bottom of the list.

I will see Anellah soon, she is still in recovery and I am hopefully that God's peace is surrounding her so that she feels calm and is not agitated as she normally is when waking up from anesthesia. Thank you so much for your thoughts and prayers. I believe God had His hand on this little girl and perhaps the reason the results today were so different than 13 days ago was because of His healing.

Quick Update

Tomorrow I will bring Anellah to the hospital for another endoscopy to look at the damage and do more repairs in her esophagus. They will also do a CT scan and some other tests and she will stay overnight. I am hopeful that tomorrow afternoon we will be given some sort of idea regarding the plan for her as it relates to her liver. Please pray that we all sleep well tonight as we need to leave our house at 5:15am and I want Anellah to be well rested.

Proof that Anellah is a super-stellar patient and will sit still for blood draws even though she is a "hard stick"

Be Bright

Last year rather than making a New Year's Resolution I chose one word, the word was "Listen." Throughout the year I tried to focus on that word and it made a difference. I actually listened to strangers rather than just half-heartedly chit-chatting. I listened to my kids and tried to really understand what they were telling me both with their words and actions. I also tried to listen more deeply to what God was telling me. In a way I think I should choose the same word this year since I still have so much room for growth in this area but it really is time for a new emphasis. Perhaps each year I will continue to reflect on past words while adding a new focus.

This year I had been thinking of what word I would choose however then Anellah's school asked each family to choose a word and the school made a display with all the various words chosen by families. As a family, we chose the word "Bright." Matthew 5:14 tells Christians that we are "the light of the world" and sadly not all Christians act as such a light but this year our family chooses to brighten our light for all to see. This year we seek to "shine light stars" in a "crooked and depraved generation" (Philippians 2:15).

What a beautiful word for Anellah, she is such a dazzling light to those around her from the clothes she chooses to her smile that lights up the room. I also feel like every time Evelyn smiles it is so genuine and pure everything is more sparkly and everyone who sees her face light up can't help but smile themselves. And Capper, his ENERGY just fills the room! The amazing thing about Capper is that although he is just shy of 3 years old he already has an impressive ability to see a need and help! This means anything from running into the room with a baby toy when he hears Evelyn fussing to holding a door for someone whose hands are full, to curling up beside Anellah when she is pouting and gently saying, "What happen 'nellah? What's wrong? Are you sad?" I am blown away by these daily gestures.

Being a light is something I have been thinking about for myself too. How can God most use me? How can I make my light shine brighter? How can I share this light with others? I have some thoughts but I need to mull over them a bit more before I am able to type them out. I am also excited to see what God teaches me about being BRIGHT and illuminating the world around me.

I think this radiant journey has already begun as I struggled from a point of discouragement and disappointment when Anellah was unexpectedly hospitalized after Christmas and we were suddenly faced with the "next step" in her liver's deterioration to a place of acceptance. There will be many times when I am faced with the struggles that Anellah has to go through due to her medical issues and I am sure I will often meet them with sadness. I will not deny myself the opportunity to grieve by ignoring the feelings; by "just trying to move on;" or by "trying to stay positive." So there will be days that I feel sad but even in the disappointment I think God can make my brightness shine through. Who knows perhaps he will bring new people into my life to share their light with me on the days when mine is but a dim flicker and I need some help to see.