Development: Hers and Ours

Bailey had a six month neurodevelopmental appointment last week. Although we always long to hear good news the reality is that these appointments confirm what we already know in our heads but struggle to accept in our hearts.

Bailey continues to be on a developmental trajectory that will leave her severely and multiply impaired. In addition to an ongoing lack of head growth, she is beginning to exhibit many of the postural and tonal abnormalities that are typical for children with cerebral palsy. These patterns include increasing hypertonicity or tightness through her arms and legs and hypotonicity or low muscle tone in her trunk. She also is demonstrating clonus (a spasmodic alternation of contraction and relaxation of the muscles) that results in her ankles bouncing in a jerking motion. She is also "stuck" in many of the primitive reflex patterns that are typical for infants but then must become integrated to allow development of consciously controlled movement. As a result she continues to be unable to perform purposeful motor movements. She also continues to be unable to smile or verbally interact in an intentional way. The development of additional saliva as she begins to cut teeth has resulting in increasing difficulty for Bailey in managing her secretions. She often gags and chokes on the saliva and we have begun to use a suction machine to assist her with clearing her airway when needed.

Some of the positive developments include the addition of a new medication that along with the use of a feeding pump significantly improves her comfort with feedings. This also has helped her with sleeping and even occasionally napping during the day. Overall, in the past two weeks for the first time, she has had more comfortable days than days when she was in pain. This has been a tremendous blessing.

I personally often (certainly not always) feel a deep sense of peace in this time. In part this is because the tyranny of the immediate prevents too much deep reflection. But even more than that, it is the acute and daily reminder that this situation is so clearly beyond us. There is no illusion that we can control this situation. It just is. As a result it is easier to live in the present moment without fear of the future. Thank you all for your ongoing care and concern.
Sincerely,
The Mekkes

Canvas

Heather and I recently watched a message in which Louie Giglio states that, “God paints on a canvas that is larger than what we can see. Through a key hole the cross looks like a horrible mistake. Like God has lost control. But in stepping back and looking at the larger picture it is the most beautiful part of the story!”

This is such a beautiful and powerful visual picture. Although it sometimes feels like that door is locked and we are only left with the “keyhole” view, it is our prayer that the door would continue to be pushed open at least a crack. One way that we continue to gain a glimpse of the larger story is through the thoughtful words and support that we continue to receive from friends, family and even strangers. Thanks to so many of you for your willingness to enter into the messiness of life with us!

A quick prayer request. Bailey will have an upper GI tomorrow morning at 9:45 in which they place a scope through her esophagus, stomach and the opening to her small intestine to check for structural abnormalities that may be contributing to her pain with tube feedings. In preparation she will not be able to eat after going to bed tonight. Those of you with young children know how challenging a hungry infant can be so please remember her (and us). Also that we may know better how to make her comfortable during feedings.

if you would like to help...

there are 3 areas that we are going to concentrate on:

1. matt and heather's 9th anniversary is this tuesday!

* a phone call *a card *dropping off some flowers

*i can find out what restaurant they will be at-maybe we could pick

up their tab?

2. the kids

kimberly krampe had a great idea: to put "activity packs" together for them. heather plans out their activities for the morning and the afternoon...the kids would be so excited to open a new packet of activities-and/or snacks! if something like this is on your heart...please contact kimberly...kkrampe@live.com. she is happy to help with ideas too!

3. monday meals

there are some wonderful friends and family from up north that have been providing frozen meals...these have been so greatly appreciated by matt, heather and family.

i asked heather if there was a day that is harder to get a meal together and she mentioned that mondays are really difficult. soOoo...that's where this next idea came about...getting a fresh meal to them on mondays would be a huge help! if you are able to do this, please contact me, jaren....at greenappledesign@comcast.net . i will place you on the list to the side of this blog so that if you forget the date...you can check the blog!

thank-you so much for your concern and your prayers for the mekkes family!
this last stretch of time has been increasingly more painful for everyone...
your faithful prayers and love mean so much to them!

a quick update on bailey:

matt and heather have decided to put feeding therapy on hold for the time being. this has been a difficult decision...but, a necessary one. bailey does not have a lot of energy to even work towards her oral therapy...another piece of grief that matt and heather experience.

secondly, they met with bailey's pediatric neurologist...this doctor is encouraging matt and heather to use some meds that would act as a sedative for bailey so that she would not be aware of the pain that she is experiencing. as difficult as this decision is...it is one that will allow bailey to have better, less painful days. it will also allow her to sleep-which, she hasn't been able to do. she is up all day...maybe sleeping 30 minutes...and the nights are just as difficult.

lastly, matt and heather want me to express their gratitude for you, your love & your prayers. each day they rely on the portion that God gives them...
they are such amazing people...a m a z i n g .

when words aren't enough...

i'm on my knees this morning asking you

...our Creator...

to AMAZE us.  

because you are amazing and can do amazing things.

let the earth quake Father and AMAZE

us as you move in bailey's life.  i am holding

on to hope for my dear friends and their

beautiful bailey...that you will move.

You are the Great Physician...

You deserve our highest praise

and i continue to have faith

and believe that you will AMAZE us.

**please continue to pray for matt and heather...this past week-end was extremely difficult...  several of you have asked what you can do for the mekkes family right now...we are working on some ideas-if you would like to take part...please drop me an email and i will be in touch with you.

i talked with heather last night..my heart just broke again, listening as she shared news about bailey. she is such an amazing mama..so centered on what is best for bailey. i kept waiting to hear her talk about getting some relief..and she did, but not for herself or matt..but, for bailey. and i know matt is in that same mindset. they are in this fight for their child's well-being and are doing every single thing one could imagine to make sure she has the care necessary for each day. the heavens are clapping for these two...

a p p o i n t m e n t s

there are many, many doctor's appointments..and many still to come.
tuesday, bailey was in feeding therapy with heather,
she had 2 seizures in a matter of 25 minutes.
bailey continues to struggle through these sessions.
but, they continue to go and are praying for positive results.

s e i z u r e s
she is having more seizures..and, they are harder to detect-
which must be so frightening. each episode physically wipes her out!
the doctor's have increased her medications in order to be preventative...
please pray that they will be able to prescribe the correct amount-
enough to stop her seizures, but will not cause her more pain.

p a i n
with each feeding, bailey continues to be in a lot of pain.
there are 3 or 4 really hard days of feeding to 1 good day...
this alone brings much sadness and ache,
as matt and heather can do so little to relieve her pain right now.
she is scheduled to see her pediactric neurologist in 2 weeks.

t e c h n o l o g y
matt and heather's internet has been giving them some trouble.
your emails and responses to this blog mean so much to them!
comcast is going to be fixing the problem...so, they will
be up and running again soon!

June 16

It has been such a long time since our last post and yet it seems like only yesturday. I have struggled to know what to write. This last month has held some of our darkest days, and also some of our brightest. Bailey's pain with feeds progressed to almost every one and was very extensive. We have tried a few different medications to help control the pain level and we feel like we have found something now that may be helping. We are so incredibly grateful that Bailey is more relaxed and comfortable. We still have hard days but have had a few good days lately. We are learning not to take the good days for granted, and continually praise God for them.

Life has been very busy with appointments lately. Bailey has feeding therapy twice a week for the next 12 weeks, and has also started her physical therapy, and occupational therapy with the Early On program. As of now, they have showed us different excercises to do with Bailey at home to help her progress, and to reach her potential. Please pray that Matt and I would have chunks of time during the day to do these different excercises with her.

We wanted to share some of our "bright" moments as well. Lexi is cooing a lot and always has a smile on her face - her middle name, JOY is so perfect for her. Bailey has also cooed a few times and I have seen her smile once, which has been such a gift. I continue to hold on to HOPE that we will have many more smiles and a lot more cooing.

In closing, I just wanted to share one statement with you that has been such a source of truth and comfort in the past few weeks. Jesus Christ is not my security against the storms of life, but He is my perfect security in the storms. He has never promised me an easy passage, only a safe landing.

Prime Time

Bailey has been increasingly uncomfortable each night from about eight o'clock until sometime in the night :) On a good night this sometime is around 11:00. On a bad night it is not :o By increasingly uncomfortable I mean screaming and crying for hours at a time and having traces of blood in her stomach. We are working with several different care providers on discovering what contributes to her discomfort. Possible culprits include medications she is on, milk allergies, something related to the placement of the feeding tube, and/or general colic. Because of a sugical procedure reflux is not a likely canidate for the problem. Bailey, like most two-month-olds, has not been cooperative in verbalizing what exactly the problem is ;)

Yes we have tried car rides (which sometimes helps), putting her in the car seat near or on the dryer, in the swing with various "white noise" and countless other things. Please remember us during the "prime time hours."