Posted (Tina) in All Posts on May-12-2009

Ella had an amazing day.

She did really well with feeding therapy. Our current tactic is for me to hold her on my lap, dip my finger into the food, and swipe across her lips, sometimes getting it into her mouth. The first bite is when she retches, but the rest of the time it is minimal, which is a big deal for her. The biggest accomplishment today: no crying or tears. We went through an entire session and she tolerated everything. It is so nice to not feel like you are torturing her all the time. Don’t get me wrong – the feeding session was not something she enjoyed, but she did not cry or meltdown once. She tolerated me swiping the peaches across her lips and ever so slyly putting some into her mouth on occasion. Tomorrow, we are going to start trying again with the spoon. I hope that she tolerates that change too.

Also, I discussed with the OT that Ella does not drink at all. She completely refuses the bottle. Over the months, she would drink here and there, even throughout the night, because she was so thirsty. She would retch nearly every time and it used to amaze me that she still even had a desire to drink. But the instinct of thirst was so strong, that she couldn’t help but drink.

Ever since her SVC procedure at the end of February, she has refused the bottle. This is also the same time that her fluid issues were reduced and we were not having to administer the high amount of diuretics. So, I actually think that the diuretics were making her insanely thirsty. However, now that she has not been on the huge amount of diuretics, the thirst is not there and so she will not take anything to drink. This isn’t great for her either, so the OT is going to think of some exercises that we can implement to help Ella.

The Bun did not take her nap at her normal time today, so I was not sure how well the physical therapy session would turn out. Well, she surprised me there too! For whatever reason, she was very tolerant of the exercises and worked hard. About 30 minutes sitting up and reaching for toys. Then, we switched to tummy time. That usually lasts for 5-10 minutes. Instead, she spent the other 30 minutes on her belly – it was amazing. She would lift her head, weight bearing on her arms and elbows, get tired and rest her head down again. Then, the PT guided her by tucking her knees up and under her tummy, so she was placing weight on her knees when she would lift up. A simple demonstration is all it took and Ella kept trying to replicate the position on her own. The Bun was just in a great mood.

We are still working on speech therapy and have an appointment set for May 26th for Ella’s evaluation. It will be interesting to see what the speech therapist recommends for treatment. At this point, we would love verbal communication from Ella, but realize that simply forming some type of communication (signing or using picture books) would be a step in the right direction.

On a more serious note, I think that sometimes it is hard to step back and realize how different our journey is than most with lots of OT, PT and soon-to-be speech therapy. On top of that, Ella is considered medically-fragile. This just means that she does not have the immune system or resources to fight off common illnesses (we need to be especially conscientious while she is on oxygen therapy). In light of that truth, it means that we need to be careful who she is exposed to, and try to stay clear of public places as much as possible.

We are getting ready to go on vacation this week and have so many people that we want to see and yet, Ella cannot be exposed to children and most of our friends have kids (children inherently carry lots of germs). We are hopeful that some friends may be able to get babysitters, but realize that many will not and we will just have to skip seeing them this time. Ella has 4 cousins that I would love for her to meet and yet, it is not possible this trip.

I have been on the phone with the durable medical equipment company this week, arguing for them to send her monthly order of special formula and supplies early so we can make it through our vacation. Also, trying to scheduling an echocardiogram, researching up on a question regarding one of her medicines, coordinating the speech therapy evaluation, making sure we have oxygen tank refills and a place to exchange them upon arrival at our destination, etc, etc.

So every so often, it hits me that we have a special needs child that is medically-fragile. I realize that this is not a news flash, but it just hits me sometimes…and some days, it is harder than others. It is difficult to watch your dearest child not able to do things that “healthy” children are able to do. It is heart-wrenching to not see her able to drink from a bottle or eat or drink or crawl or walk or talk when most kids her age are able to do these things. Heck, she even needs oxygen therapy to breathe!

I know that we have been blessed with a little miracle. And this is not about complaining or venting, but I’m trying to express that the emotional impact of these realities can sometimes get lost in the mundane activity of life…and yet out of nowhere, it can just hit you. Today was one of those days for me.

A dear friend sent me a good read last mother’s day. She has a special needs child along with healthy children and is an amazing woman of God. I had to retrieve it in my email and read it again to try my best to get a different perspective.

Mothers of Children with Disabilities Worthy of Praise

Expectant mothers waiting for a newborn’s arrival say they don’t care what sex the baby is. They just want it to have 10 fingers and 10 toes.

Mothers lie.

Every mother wants so much more. She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.

She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you’re one who got a baby with a condition you couldn’t pronounce, a spine that didn’t fuse, a missing chromosome or a palate that didn’t close.

The doctor’s words took your breath away. It was just like the time at recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled her for a well check, and crashed headfirst into a brick wall as you bore the brunt of devastating news.

It didn’t seem possible. That didn’t run in your family. Could this really be happening in your lifetime?

I watch the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing, it’s a wondrous thing. They appear as specimens without flaw — muscles, strength and coordination all working in perfect harmony. Then an athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

There’s no such thing as a perfect body. Everybody will bear something at some time or another.

Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.

Mothers of children with disabilities live the limitations with them.

Frankly, I don’t know how you do it. Sometimes you mothers scare me. How you lift that kid in and out of the wheelchair 20 times a day. How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the cliches and the platitudes, the well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike. I even wonder how you endure schmaltzy columns like this one — saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this, you didn’t jump up and down in the motherhood line yelling, ”Choose me, God. Choose me! I’ve got what it takes.”

You’re a woman who doesn’t have time to step back and put things in perspective, so let me do it for you. From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability. You’re a neighbor, a friend, a woman I pass at church and my sister-in-law. You’re a wonder.

~Lori Borgman

Amber Riley on May 12th, 2009 at 9:23 pm #

Tina, that was a good read. I just sent it to a very worthy friend of mine. Thanks!

Terri Trainer on May 12th, 2009 at 9:24 pm #

Sister, please give the Bun a hug from Aunt T and tell her I’m so proud of her progress. I’m also very proud of you…as I mentioned during my visit, YOU are a wonder and in my opinion a woman worthy of praise! I love you and will keep you in prayer as you guys head out to CA. All the details will work out, and yes, by the time you get back you’ll probably need another vacation! Love you – T

sherry martinez on May 12th, 2009 at 9:46 pm #

once again i just want to take a moment to thank you for sharing. your words thoughts and prayers are always very insightful and encouraging. enjoy your wonderful daughter as she grows and changes she will always amaze you. hugs from sherry and baby cayden

Joel Snyder on May 13th, 2009 at 5:23 am #

Ella, You are amazing and continue to impress me with your progress. Please give your Dad a big hug and kiss for me he helped Grandpa with the sprinklers and the furnace yesterday. Tina I can’t begin to tell you what a wonderful Mother and advocate you are for Ella. You inspire me in so many ways with your determination. Have a good trip and I hope you can have some fun with all the other duties with Ella. Love,Grandpa!!!!!!!!!!

Raewyn on May 13th, 2009 at 6:06 am #

Although my child isn’t anywhere in the same league as Ella the reading you posted and your emotions rang true to me today. My “perfect” child was great until 7years of age when we hit the brick wall with a congenital heart defect. Those days were so tough and we had days just like yours today when the enormity of it all just hit out of the blue. Normally you are in survival mode just getting through the days. I get more emotional about it now looking back as that was one thing I couldn’t do then. I needed to function then. I was lucky and we had a quick recovery and it is now in the past with just a yearly visit to the cardiologist. I hope you get to our point soon and will look back and wonder how you got through these days and marvel at what the west family has acheived. You already have acheived so much but sometimes it is hard to see it thru the appointments and day to day tasks.

Laura Huene on May 13th, 2009 at 7:21 am #

You are amazing Tina….I cannot imagine what it takes for you to walk through each day. I am praying your vacation is truly a vacation…a rest from the “everydayness” of it all. A time to make sweet memories with Ella. Praying for peace and a taste of hope for all of you.

Jennifer Harris on May 13th, 2009 at 8:10 am #

Ella will continue to progress through this journey and GOD will show all HIS miracle workings. We speak and believe our blessings. Your family is a true example of love and faith. Thank you for sharing! Ella is an angel!!!!

Rachel & Ava on May 13th, 2009 at 10:41 am #

I have to agree, that is a very good read, and it does hit you like a building crashing down on you. My family learned through my experience with my daughter to not take their healthy children foregranted. I have my angel baby who is healthy now and I am so blessed. I love seeing Ella progress everyday, she is another of God’s great miracle’s. Thank you, and Happy Mother’s Day

kristin on May 13th, 2009 at 1:49 pm #

Hey T and sweet Ella! You are making huge progress!!! Thos peaches are yummy : ). I know we all wish we could meet and hold Ella (and her parents) but know her health is top priority. She has come so far! I love you Tina and pray for a safe, fun and joyous vacation! Love, Kristin

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