Disabled.

Most computers these days come with a handy internal wireless router. It typically defaults to being “enabled”. But every random once in a while, you need to go in and tell it to “Disable wireless access”. When you’re all done doing whatever mainentance or whatever, you go back in and click “Enable wireless access”. Easy as pie. One click and you’re ENabled. I promise this has a point.

see, yesterday we had our first appointment with Dr. Natalie, Kendall’s new pediatrician. And it was pretty obvious that we didn’t need to put Kendall through all the developmental checking that most normal 4 month old well child visits entail, since she just isn’t there. So Dr. Natalie focused on Ben and I. She talked about doing a chromosomal study on Kendall called a “microarray” to try to determine if there are deletions, mutations or copies of bad DNA on Kendall’s chromosomes, contributing to this grouping of “symptoms”. Dr. Natalie actually has a handful of patients that present with a lot of the same things as kendall, and they don’t even have a name for “it” yet – but these kids typically have some kind of chromosomal abnormality.  Knowing IF she has this, and if so , where and what kind – may help us get some answers about what we can expect for Kendall. Kids with a chromo-1 deletion typically need respiratory support for their whole lives. Kids with a chromo-5 deletion are just a little weaker and smaller than their peers, but otherwise pretty typical. And there’s clearly a whole range in there. Those are just examples. So Dr. Natalie gave us the referral to a neurogeneticist at the University of Chicago, and then told us  –

“Look, don’t let this be the elephant in the room that never gets discussed, but for RIGHT NOW, you have a disabled child. She has needs beyond what your other babies ever did. She is special and unique and challenging to you as parents and you HAVE to be able to grieve about this, cry about it, get angry about it – but KEEP TALKING ABOUT IT. Work through it, get her the help she needs, and live your life”

At least she’s not a sugar-coater!

It was….semi-shocking to hear. But not devastating. She even said – just because RIGHT NOW she is disabled does not mean she always will be. She could be caught up by 2, it could take a few years past that – there’s really no way to know. But for right now, we can’t expect anything even resembling normal milestone achievement. We can’t expect her to eat like a normal baby or be on a normal baby timeline. She’s on her own.

and i heard that word “disabled” and I thought – well when I can go back in and click on “enable”? I want kendall to be ENABLED to be normal, to grab at toys that catch her attention, to enjoy the taste of pureed bananas and rice cereal, to babble and coo at me and reach for my face. But she can’t. RIGHT NOW, her switch is disabled. Do I believe it will always be? no. But I think for right now, God has her switch turned off for a greater purpose. I HAVE to believe that or it all is pointless.

It was tough to hear, and yet in a way, so relieving. It took this immense amount of pressure off of me to have to pretend like she’s ok, and that she’ll catch up at any minute. Like maybe this next feeding she’ll decide she has enough calories and just roll over and say “Thanks mom! that was great! I can swallow normally now so can you please take this tube out of my nose?” So now that that card is off the table, I can breathe. I can learn to be ok saying ” You know what? Kendall is doing ok FOR HER today. She won’t be caught up for a long long time, but we’re headed in the right direction for her.” I can grieve the loss of my baby’s “normal” babyhood, accept it for what it is, and move on, enjoying Kendall’s normal. I can rejoice in the small steps she does take, like bringing her hands together and spontaneously moving her legs – things I always took for granted with my other babies. EVERY SINGLE THING this child does will be cause for celebration and you better believe we will!

Other things we talked about:

Again in her non-sugarcoaty way, Dr. Natalie did give us a reality check on the Vitalstim therapy. I guess to our minds it was kind of being held out as this “holy grail” of miraculous cures, and that once we finished that 6 week course of therapy that Kendall would be able to drink from a bottle almost instantly and we could get her off NG feeds and start regular foods shortly thereafter. Apparently – that’s not so much the case. YES it CAN work spectacularly in some kids, and its just the boost they need to get over the hump of their dysphagia (inability to swallow). But in MANY kids, they need a lot of help AFTER vitalstim to continue training their muscles to correctly swallow and not breathe in foods. then its a matter of finding the right consistency of foods they can eat, then its a trial and error “2 steps forward 1 step back” process of figuring out how much of their food can be taken by bottle and how much has to be put back down the tube. Then of course there’s the issue of Kendall’s reflux causing her food to continue to come back up her esophagus and possibly entering her lungs that way. All in all – it’s still going to be a long road ahead. She still needs a LOT of prayer that her body will continue learning how to eat and function properly.

We also discussed that if Kendall isn’t off the NG feeding and is still refluxing that she would be a candidate for not just G-tube surgery (which would be a tube inserted directly into her stomach), but G-J tube surgery, which would deposit her food directly into her intestines. The problem with that is that obviously, that’s another step backwards from normal eating, and second, it would involve a continuous pump of food since your intestines digest food even slower than your stomach does! So while I AM anxious to not have to inhumanely continue forcing a plastic tube down my daughter’s nose every 3 days, or as often as she can pull it back out, I am hopeful that we get to take the tube out because she is eating by mouth, not by intestinal pump.

But in spite of all this crazy news being thrown at us – it was a good visit. I feel like I have a much more realistic view of what we’re looking at now, and we can all stop pretending like she is “normal”. And THAT IS OK. Please don’t feel like you have to walk on eggshells around me, or say just the right thing. NONE of my children are normal!!! *I MyseLF* am not normal! I accept and embrace this! We can all just accept Kendall for what she is now – a baby who will need a lot of help and support and extra holding since it will be a long time before she can hold herself up. She is ok though! In spite of her horrible week of puking and pooping last week, she still managed to gain a whole ounce! Not great, but at least we didn’t go backwards! She had a cranky day yesterday cause of her one vaccine shot, but seems a little happier today. She took her first walk outside in the stroller yesterday in the GORGEOUS weather we had, and was enthralled by the breeze, the sun, the sound of all the kids playing at the park. She is getting better at being able to suck on the binky and can hold it in herself for more than 10 minutes now!

These are the milestones my “otherwise-abled” baby can meet today. 

And just in case you thought your prayers were going unanswered – I got a call yesterday afternoon.

From the insurance company.

They approved her formula! Praise the Lord for this HUGE step in what I am sure will be a lifelong battle of getting Kendall what she needs! They also covered a VERY large amount of her very large hospital bill, so we are grateful for that. We are out of our “flex” medical dollars for the year (last year they lasted us until November!), but we have hit Kendall’s deductibles, so I am not quite sure where this leaves us. The doctor told us yesterday that bascially Ben can never leave his job because Kendall will always be considered “pre-existing condition” and will be very hard to find insurance for. She advised us to start the process of applying for Medicaid for her to help cover all these other costs. That was a little hard to hear. I don’t know why. But hey if it helps her get what she needs in a timely manner, then I am all for it.

So thats todays update.

She’s doing good, really. Most days she is just like a normal baby – except one who’s about 3 months younger than she is! She doesn’t have breathing issues, she hasn’t been puking all day in a few days now, and she just kind of fits into our daily crazy routine here. We continue to be so very blessed by the amazing amount of support and help from friends, neighbors, family and our wonderful church family. I have lost track of who I have or haven’t given thank you cards to. I have lost track of who has given and provided what at which time. but i continue, we ALL continue to be SO very blessed and help up by you all. My family would not be eating or wearing clean clothes without you all. I keep thinking that any day now i’ll be able to function normally. And most days I am ALmost there. I think I have forgotten how to grocery shop and menu plan. I get distracted even more easily than I used to. 

But we’re making a comeback folks! Life WILL return to normal soon, even if I have to will it that way by my own sheer stubbornness!

Speaking of – “normal” is knocking at my door in the form of hungry kids who need lunch and then to get to preschool. Please please feel free to write to me or call me with any questions. Ask anything you want if I am not explaining it well! And one of the biggest questions I get? How can we pray for Kendall? Just pray that her nose/sinuses resist the infection that COULD so easily be introduced by this foreign object ever present there! Pray that her reflux stays controlled on the meds she is on this week so she can continue to gain weight and build up her immune strength. Pray that our therapy team would be able to evaluate Kendall with clear minds next week to get her exactly what she needs, and starting soon!

And pray this monster of a headache I am getting goes away soon please! It’s making me want to turn all Incredible Hulk like and tear my clothes off in anger. Ok i am kind of only kidding about that. I like the shirt I have on too much to rip it. I always wondered that – how Bill Bixby was able to replace all his clothes all the time…Anyways.

Have a wonderful day – I pray warmth and sunshine in abundance over your houses, whoever and wherever you may be!

T-crest out.

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Comments

  1. Oh Terra….I am tearing up….I can’t believe the enormous burden of pain and worry you are under. NOT knowing is so difficult and getting up and staying strong must be so hard. But we are mothers….and no one can get us to move mountains like our children can. I”m just so sorry Kendall has to go through so much and you have to cope with the “not knowing”. And absolutely that is the truth. Disabled today means a challenge of a huge proportion. It is not a diagnosis or a life sentence, it’s a call for action. Keep searching and learning and maintaing a life force of CAN DO and of love. I will pray for you all . For answers, for good health, for strength and for a peaceful heart even in the midst of agonizing pain. Lots of love and prayers, Shanah

  2. Terra, you are so special. I can’t help thinking, though entirely heart-wrenching & tear-your-hair-out, you will shine, Kendall will shine, Jesus will shine! Your family is an amazing, wild unity of uniqueness & love. Thanks for the prayer points. It is a gift to know you & love you (all)!
    Love, Becca

  3. Dear Terra and Ben: We are friends of your mom and dad. I got to hold Kendall once at the Valentine Review and she is precious. I look forward to keeping up by reading your blog. You could and possible should write a book.

    From the moment I held Kendall in my arms (mema only let me have her for about 2 minutes) she won my heart. I pray for her and you all day as God’s Spirit leads me. Know that the army of God is behind you on this journey.

    Jan

  4. Hey guys, catching up on the last week or so in your lives. It was so wonderful to see and meet Kendall for the first time last week, she looked RIGHT at me as I said hello, with those beautiful big eyes of hers! I pray that God has brought you to the pediatrician who will be Kendall’s constant advocate and your conscientious guide throughout the months and years as you maneuver your way on a journey with unknown destinations, but blessings of every sort along the way. Every stone will be overturned, every wall leaped over (or busted through!), you WILL bring Kendall through to a life of health and laughter ~ I just feel it in my bones and pray for it each day. Hope to see you out and about more as the weather warms! God Bless you all! Carrie Beth

  5. Thank you, Thank you, Thank you!!!! You inspire me to be a better a person and mother. When life gets tough for me I think I won’t make it and then I read your blog and I realize my life is not nearly as crazy as yours and that if you can do it so can I. We have decided to go ahead with surgery for Gabe (5yr old) in 4 weeks. I tried non-surgical means first but it did not work. I am scared of all the things that could go wrong. I had so looked forward to talking with you about what to expect and I still hope I get that chance before his surgery. If not I know that you will say a prayer for my child the same that I pray for Kendall each day.

    I hope today you feel all the arrpeciation from me that you have felt towards your friends & family these weeks. I am truely thankful I have you as a friend and I look forward to reading your next blog. I need to update my blog….seeing you update yours with all the crazyness in your life I know I can do it too. (Maybe you will add my blog to your friends & links space).

    Have a wonderful blessed day!
    Carmen

  6. Terra, Terra, Terra…
    We are praying for you. Thank you for telling us how we can pray for you and for sharing so openly what is going on with you and your family. We love you all sooooo soooo sooooooooo much! Give the girls a big kiss from Auntie Lindsy and Uncle Friend.

  7. T-bone…

    I was glad to get filled in on Kendall’s life tonight. It’s been a while since I’ve checked your blog (promise, no drive bys!)
    I love her & I don’t even know her and may never even meet her…but she is a precious little angel who is blessed to have a wonderful mama & daddy!!!

    Take care girl! you’re doing great…you are a really good mom!

    Love,
    lori

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