December 6, 2010
November 16, 2010
common theme and prayer request.
A few weeks ago I was feeling so overwhelmed by the common theme told to me by all of Pin's therapists. "She needs to right her head" is what I hear again and again. I work SO hard with Pinny at home and it seems so beyond my control to teach my daughter a reflex that should come naturally.
I was wallowing in my pity when a text came in. It was from Lisa Wells (my dear friend who introduced me to Jeremy) whom I hadn't talked to in several days. It simply said, "But you are a shield around me, O LORD; you bestow glory on me and lift up my head (Psalm 3:3)."
I looked at the text. Then again. Then again with tears. Then again with a new understanding: The Lord is the one to do the work and I need to try my best but wait on Him to "lift her head." Then again with a humble heart at how personal our God is.
Will you join me in praying this for Pinny?
"Lord, lift Pinny's head."
xoxo.
I was wallowing in my pity when a text came in. It was from Lisa Wells (my dear friend who introduced me to Jeremy) whom I hadn't talked to in several days. It simply said, "But you are a shield around me, O LORD; you bestow glory on me and lift up my head (Psalm 3:3)."
I looked at the text. Then again. Then again with tears. Then again with a new understanding: The Lord is the one to do the work and I need to try my best but wait on Him to "lift her head." Then again with a humble heart at how personal our God is.
Will you join me in praying this for Pinny?
"Lord, lift Pinny's head."
xoxo.
November 9, 2010
hello. again.
Well....here we are again. We have had another 2 week stretch of no seizures and just as we were celebrating another milestone (14 days!!!) they came back again. Today. I type this in her room, watching her sleep. She is totally worn out. So am I... emotionally speaking. I am ready for them to be gone forever. I keep hoping the "last one" is truly THE LAST ONE. But, I will choose to not lose heart.
In the past 6 weeks, Pin has had around 15-20 seizures. She used to have that many in ONE day. We have much to be thankful for and we are still hopeful she will outgrown them. I just wish it would happen today.
In the past 6 weeks, Pin has had around 15-20 seizures. She used to have that many in ONE day. We have much to be thankful for and we are still hopeful she will outgrown them. I just wish it would happen today.
October 18, 2010
the counting has stopped.
A bit of a set-back day, but we WILL NOT lose heart. I woke up and read Psalm 139 not knowing what the day was to hold. The Lord ALWAYS shows up. He provided a friend to love on us and His Word to get us through. My prayer continues to be the same..."You made Pin in my womb, now complete her outside my womb."
Xoxo-
S.
Psalm 139
1 O LORD, you have searched me
and you know me.
2 You know when I sit and when I rise;
you perceive my thoughts from afar.
3 You discern my going out and my lying down;
you are familiar with all my ways.
4 Before a word is on my tongue
you know it completely, O LORD.
5 You hem me in—behind and before;
you have laid your hand upon me.
6 Such knowledge is too wonderful for me,
too lofty for me to attain.
7 Where can I go from your Spirit?
Where can I flee from your presence?
8 If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.
9 If I rise on the wings of the dawn,
if I settle on the far side of the sea,
10 even there your hand will guide me,
your right hand will hold me fast.
11 If I say, "Surely the darkness will hide me
and the light become night around me,"
12 even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.
13 For you created my inmost being;
you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
16 your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.
17 How precious to me are your thoughts, O God!
How vast is the sum of them!
18 Were I to count them,
they would outnumber the grains of sand.
When I awake,
I am still with you.
19 If only you would slay the wicked, O God!
Away from me, you bloodthirsty men!
20 They speak of you with evil intent;
your adversaries misuse your name.
21 Do I not hate those who hate you, O LORD,
and abhor those who rise up against you?
22 I have nothing but hatred for them;
I count them my enemies.
23 Search me, O God, and know my heart;
test me and know my anxious thoughts.
24 See if there is any offensive way in me,
and lead me in the way everlasting.
Xoxo-
S.
Psalm 139
1 O LORD, you have searched me
and you know me.
2 You know when I sit and when I rise;
you perceive my thoughts from afar.
3 You discern my going out and my lying down;
you are familiar with all my ways.
4 Before a word is on my tongue
you know it completely, O LORD.
5 You hem me in—behind and before;
you have laid your hand upon me.
6 Such knowledge is too wonderful for me,
too lofty for me to attain.
7 Where can I go from your Spirit?
Where can I flee from your presence?
8 If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.
9 If I rise on the wings of the dawn,
if I settle on the far side of the sea,
10 even there your hand will guide me,
your right hand will hold me fast.
11 If I say, "Surely the darkness will hide me
and the light become night around me,"
12 even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.
13 For you created my inmost being;
you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
16 your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.
17 How precious to me are your thoughts, O God!
How vast is the sum of them!
18 Were I to count them,
they would outnumber the grains of sand.
When I awake,
I am still with you.
19 If only you would slay the wicked, O God!
Away from me, you bloodthirsty men!
20 They speak of you with evil intent;
your adversaries misuse your name.
21 Do I not hate those who hate you, O LORD,
and abhor those who rise up against you?
22 I have nothing but hatred for them;
I count them my enemies.
23 Search me, O God, and know my heart;
test me and know my anxious thoughts.
24 See if there is any offensive way in me,
and lead me in the way everlasting.
October 17, 2010
THREE WEEKS and counting....
What a normal weekend we just had! We are so blessed that Pin continues to do so well. It has officially been three weeks since her last seizure cluster. Her body is stronger, she is making better eye contact and is grabbing things while on her tummy. We have seen MAJOR improvements in her overall these past few weeks.
We are starting to relax a bit and the nervous, pit-in-my-stomach feeling that has been present since May is now starting to fade. Now, I get to focus on the 20 lbs. I gained.
Xoxo-
S.
We are starting to relax a bit and the nervous, pit-in-my-stomach feeling that has been present since May is now starting to fade. Now, I get to focus on the 20 lbs. I gained.
Xoxo-
S.
October 14, 2010
grateful and humbled. day 18 & counting.....
Yesterday was a BUSY day and one full of good news:
The day started with Pin having a "swallow test" in the city. She sat in a 'car seat' while I fed her green- apple flavored barium while a moving x-ray watched her suck and swallow. The room was filled- 3 techs, a speech pathologist and a physician. Pin drank one ounce before they stopped me and said all was normal except a little acid reflux (she weighed in at 13lbs. 14 oz. She's getting chunkier and more luscious.)
We then went to Oak Park to visit her Chiropractor (basically a neurological therapist) whom we have visited three times a week for the past month and a half. He was so encouraged that our next appointment is in a week.
On our way home, Jeremy and I had a conference call with Dr. Wylie from the Cleveland Clinic. She was thinking about us and called to see how we were doing (AMAZING and so kind). We updated her from mid-June on and she said, "well- I think she is going to grow out of these."
I then received a call from our Genetic Counselor (I didn't even know this profession existed until 5 months ago) saying two more test results came back normal. One more is still pending and highly unlikely to be positive.
Today, Pinny's physical therapist came and was also very encouraged. This is what happened after 45 minutes into her session. Poor Pin is exhausted.
We are so blessed, grateful and humbled by all of this encouraging news.
To God be the glory for the great things He has done-
S.
The day started with Pin having a "swallow test" in the city. She sat in a 'car seat' while I fed her green- apple flavored barium while a moving x-ray watched her suck and swallow. The room was filled- 3 techs, a speech pathologist and a physician. Pin drank one ounce before they stopped me and said all was normal except a little acid reflux (she weighed in at 13lbs. 14 oz. She's getting chunkier and more luscious.)
We then went to Oak Park to visit her Chiropractor (basically a neurological therapist) whom we have visited three times a week for the past month and a half. He was so encouraged that our next appointment is in a week.
On our way home, Jeremy and I had a conference call with Dr. Wylie from the Cleveland Clinic. She was thinking about us and called to see how we were doing (AMAZING and so kind). We updated her from mid-June on and she said, "well- I think she is going to grow out of these."
I then received a call from our Genetic Counselor (I didn't even know this profession existed until 5 months ago) saying two more test results came back normal. One more is still pending and highly unlikely to be positive.
We are so blessed, grateful and humbled by all of this encouraging news.
To God be the glory for the great things He has done-
S.
October 11, 2010
15 days and counting.....
In the past two weeks, Pin has had three MINOR seizures (33 seconds in total). The last "seizure-cluster" was two weeks ago yesterday and two weeks ago today we changed her formula to Similac Alimentum Hypoallergenic (aka 'liquid-gold'). Her body has responded so well to the formula, that we think she may have a milk protein sensitivity. She is doing great overall and really seems to be making sense of the world around her. We are blessed and so grateful.
October 7, 2010
September 23, 2010
physical therapy
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She is now fast asleep in her crib while I frantically work around the home. Any chance she can come everyday?
September 22, 2010
mrsmenlop.
For those interested, I have posted more videos on YouTube. My user name is: mrsmenlop
If you put my user name in the search box, you will find the seven videos I have uploaded so far.
Here is one from today:
If you put my user name in the search box, you will find the seven videos I have uploaded so far.
Here is one from today:
more therapists than joan rivers.
It is official, our daughter is high maintenance. Before we had children, Jer and I swore that our home would be 'parent-centered' rather than 'kid-centered'. We are eating our words.
Starting this week, Pin has an appointment with a therapist every day. EVERY DAY!
Monday, Wednesday, Friday: Neurological therapist in Oak Park (he is amazing!)
Tuesday: Occupational therapist
Thursday: Physical therapist
Twice a month: Speech therapist (it's not really needed seeing Pin won't stop talking or eating.)
Early Intervention came to our home several weeks ago to conduct an evaluation on Pin. It was a bad morning for her and she ended up having 7 seizures in front of the physical, occupational, developmental and speech therapists. They were very gracious but had to base their finding on what they saw that day. I was disappointed that Pin qualified for services but later came to see it as a blessing. After having talked to several moms, I realized my child is not the only kid who has ever needed therapy. Parents can spend hundreds (if not thousands) on getting help for their children. Early Intervention is a nation-wide program that offers services (if you qualify) for cheap. We will pay only $150 a month to have a physical and occupational therapist come to our home weekly. We are so grateful to have an amazing 'case manager' who has sought out the best therapists she can find.
Pin will be evaluated in three months to determine if services need to be continued. Of course, it is my hope and prayer that in three months she will be seizure-free and therapist free. Then, we can start our 'parent-centered' living. A girl can dream....right?
xoxo-
Starting this week, Pin has an appointment with a therapist every day. EVERY DAY!
Monday, Wednesday, Friday: Neurological therapist in Oak Park (he is amazing!)
Tuesday: Occupational therapist
Thursday: Physical therapist
Twice a month: Speech therapist (it's not really needed seeing Pin won't stop talking or eating.)
Early Intervention came to our home several weeks ago to conduct an evaluation on Pin. It was a bad morning for her and she ended up having 7 seizures in front of the physical, occupational, developmental and speech therapists. They were very gracious but had to base their finding on what they saw that day. I was disappointed that Pin qualified for services but later came to see it as a blessing. After having talked to several moms, I realized my child is not the only kid who has ever needed therapy. Parents can spend hundreds (if not thousands) on getting help for their children. Early Intervention is a nation-wide program that offers services (if you qualify) for cheap. We will pay only $150 a month to have a physical and occupational therapist come to our home weekly. We are so grateful to have an amazing 'case manager' who has sought out the best therapists she can find.
Pin will be evaluated in three months to determine if services need to be continued. Of course, it is my hope and prayer that in three months she will be seizure-free and therapist free. Then, we can start our 'parent-centered' living. A girl can dream....right?
xoxo-
September 21, 2010
another test came back...
Today I heard from our genetic counselor at Children's Memorial. She called to tell me what we already knew- Pin doesn't have Nonketotic hyperglycinemia (NKH). As many of you may recall, this was our initial, heart-wrenching diagnose that left us stunned for several weeks. We feel SO grateful that we can 'offically' close that chapter, however our hearts go out to those who have children with this disease.
September 19, 2010
September 16, 2010
best days.
I just walked in the door from a cardiologist appointment Pin had at Children's Memorial (a slight murmur was detected at birth). We had a great physician who listened intently for the murmur. Thankfully, it is gone.
While feeding Pin in the lobby, I was able to observe other families coming and going. Many people are hurting and in the midst of trials. BIG trials.
I was quickly reminded what my sister told me in the middle of my difficult Monday. "For those that know Christ, THESE are the worst days they will experience. For those that don't know Christ, THESE are the best days." Wow. Someone's BEST days include wheelchairs, feeding tubes, hard decisions about meds, etc.
If nothing else, my heart has softened to those around me. May this find you HOPING in Christ- because with Him, our best days are ahead. Always and forever.
While feeding Pin in the lobby, I was able to observe other families coming and going. Many people are hurting and in the midst of trials. BIG trials.
I was quickly reminded what my sister told me in the middle of my difficult Monday. "For those that know Christ, THESE are the worst days they will experience. For those that don't know Christ, THESE are the best days." Wow. Someone's BEST days include wheelchairs, feeding tubes, hard decisions about meds, etc.
If nothing else, my heart has softened to those around me. May this find you HOPING in Christ- because with Him, our best days are ahead. Always and forever.
September 15, 2010
another normal test result.
I just got this email from Polly at the Cleveland Clinic, "the lab just faxed me Lucca's repeat P5P CSF. It was normal. (52 range 30-80)"
Very grateful today.
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