September 23, 2010

physical therapy

Pin's first session went really well. The therapist was very encouraged by how much Pin has changed since her initial visit.

She is now fast asleep in her crib while I frantically work around the home. Any chance she can come everyday?

September 22, 2010


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:

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?


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 16, 2010

12 lb. 12 oz.

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.

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. 

September 8, 2010

September 4, 2010

not guilty.

I am not usually a guilt-ridden person, but motherhood has changed all that. With every waking hour I feel like I "should" be doing something to help Pin advance towards her milestones. In fact, Jer calls my madness 'Curves' (you know that circuit workout place for women that was popular for about 20 minutes 10 years ago). I create stations for Pin all over the house to challenge her. She was even being given 15 minutes of 'tv time' daily until my cousin read to me from the American Academy of Pediatric website stating that tv was not the best thing for a 4 month old. Pin will just have to wait to discover the Home Shopping Network- I just know she will love Joy Mangano's Huggable Hangers.

the princess and the pea.

wanna trade with me?


Well. We made it through last night without giving her diastat and this morning Pin had another seizure cluster (5 in 20 minutes or so). We just gave her the diastat an hour and 3 minutes ago (somehow a night's sleep and the morning sun makes it feel less scary). We were instructed to analyze her closely for four hours after. Jer is on "watch" right now. My parents are here and AGAIN have been a huge support.

We covet your prayers, support & love.  It means the world to us.

September 3, 2010

pin in black & white


poker face.


A dear friend (who knows all too well the ups and downs of having a child in need) wrote out some verses she clings to on a daily basis. These comfort me and straighten my often wayward perspective towards the truth:

'They cried out to the Lord in their trouble, and He saved them out of their distresses. He sent His word and healed them and delivered them from their destruction.'  Psalm 107:19-20

'I have heard your prayer, I have seen your tears. Surely, I will heal you.' 2 Kings 20:5

'He heeded their prayer because they put their trust in Him.' I Chronicles 5:20

'You will keep him in perfect peace, whose mind is stayed on Him because he trusts in you.' 
Isaiah 26:3

waiting for good news to update blog.

I am well aware I have been less than quick to update this blog. In hindsight, I have been waiting for good news before I share with you again. Truth be told, we are waiting on 'pins and needles' right now as I type. It is Friday night at 10:19 and Pin has had 6 seizures in the past 20 minutes. The neurology fellow on call at Children's just told me over the phone, "One more seizure and you need to administer the 'diastat." For those of you who are fortunate enough to not know what diastat is: liquid valium inserted through the rectum.

So- here we are praying, trusting and hoping we don't see another seizure.