Enssle Family

Pictures and a long-overdue update!

It’s been quite awhile since we’ve posted anything. It would be an understatement to say that we’ve been a bit busy lately. With doctor and therapy appointments, a trip to Kansas, and family visiting, there hasn’t been much time to sit down and upload pictures or write a blog entry. I’ll try to remedy that here!

I’ve uploaded a ton of pictures to our site. Be sure to check out more than the six pictures you see in the sidebar. I guess you could say that what I uploaded today pretty much covers the month of October!

During the first part of October we traveled back to Kansas for my cousin Aaron’s wedding. Anna and I (and Max, of course) took the opportunity to spend some time with the grandparents during the week prior to the wedding. We had a great time with Granny Debbie and Papa Rex, and I think Great Grandpa Jack enjoyed seeing Miss Anna, too. Neal did his usual traveling madness: he drove out with us on a Saturday, flew back to Denver on a Sunday, flew back to Kansas on a Thursday, and drove home with us on a Sunday. He certainly put in some mileage there. Anna, Max and I were extremely happy that he decided to join us on the long drives across the high plains.

Aaron and Shayla’s wedding was very nice…short and to the point (just like they wanted it)! It was great to see all the family who drove in for the event. That’s what I love about weddings - you have the chance to see family that you hardly ever see! We also were able to spend some quality time with Great Grandma Winnie. Everyone had a great time at the reception. One highlight was the pastor teaching everyone how to do the electric slide! Henry fell in love with the DJ’s lights and was determined to touch them despite Jo’s best efforts to dissuade him. And the BBQ was excellent.

When we returned from Kansas, Anna had her first physical therapy appointment with Kathryn from Tiny Tim. She did an initial evaluation of Anna while I filled out paperwork. She seemed to think that Anna’s biggest challenge will be keeping her left hand open. I thought that was good news! We were given a list of stretches, exercises and activities to do over the next couple of weeks until we see her again. I had a good vibe from Kathryn and I think that Anna likes her, too. We also were able to finalize our occupational therapy assignment. We’ll be starting her OT with Kathy this Thursday.

Granddad Sam and Grandma Mary came to visit us the weekend after we returned from Kansas. We didn’t do anything special - like go to the mountains or zoo. Instead, we all hung out at home and played with the babies. Granddad Sam read many a book to Henry and Anna…over and over and over and over again. And I think Mary had a fun time just playing with the babies. We certainly enjoyed having them here! I hope they don’t wait another year before they come out again!

Last week Anna had 3 different doctor’s appointments. On Monday she saw the pediatric ophthamologist, on Wednesday she saw her neurologist, and on Friday we went to the Stroke Clinic at Children’s Hospital. Here’s what we now know: Anna’s vision is probably going to be fine. There may be some issues that develop as she gets older, but at this point the doctor doesn’t see anything to make him believe that she’ll have any problems.

We were able to see the MRI images at our appointment on Wednesday. The stoke is located in the area of the brain in charge of controling movement - specifically, movement of the muscles of the arm/hand and leg on the left side. The neurologist explained that this is the same area that is affected when someone has tremors due to Parkinson’s. On the computer screen the stroke area was about the size of a quarter, which seemed huge to me until the doctor told us that most strokes she sees cover a much much larger area of the brain. The image on the screen was much larger than Anna’s head, so Neal and I imagine that the actual area is more like the size of a dime.

And on Friday we spent the entire day at Children’s Hospital. During the morning Anna had a neuro-psych exam. They wanted to determine whether or not the stroke has caused any problems with her cognition. There isn’t a whole lot they can do with a 7-month old as far as testing goes, but what they were able to do indicated that Anna doesn’t show any signs of cognitive difficulties. She had problems with those parts of the test that involve bi-manual tasks, but we knew that would be the case! Otherwise she did quite well and scored above the mean.

Later that day we met with a host of doctors from various departments at Children’s: rehabilitation, hematology, and neurology. Several teams of doctors came to examine Anna. They poked, prodded, pulled, stretched, shined light, poked again, tapped on reflex points, stretched again. Poor Anna. Through it all she maintained a sunny disposition despite having snot running out of her nose (she has another cold), drool stringing from her mouth, pain radiating from her gums (teething), and a nasty nasty cough. What a trooper. I know the experience was not a pleasant one for Anna, but it was very positive for us. We learned a lot about Anna’s stroke and her prognosis. We still don’t know exactly when the stroke happened, or what caused it, but we do know that it probably happened in utero toward the end of the second and beginning of the third trimester, and that it probably isn’t due to a blood clotting disorder. They are doing blood work to make sure that is the case. The rehab doctor was extremely encouraged by all that Anna is doing so far. She thinks that there will be very few remnants of the paresis when Anna gets older, and the neurologist said that depending on how Anna responds to therapy, this may all be “our little secret.”

So there you have it…the most up-to-date information. I’ll try to be better about posting pictures and info in the coming months. For now…enjoy!

1 comment October 31st, 2006

Lilyanna Kay Steadman

My cousin Dean and his wife Melinda just had a new baby!  In this photo, big sister Madie welcomes Lilyanna Kay Steadman into the world!  Lilyanna was born at 2:39pm this afternoon, tipping the scales at 9 lbs. 7.8 oz and 21 inches long. Mother, baby, father and big sister are all doing fine.

Welcome Ms. Lily!  We love you!

Add comment October 12th, 2006

The results are in

Our neurologist called yesterday evening and gave us the results of Anna’s MRI.  The MRI confirmed the initial diagnosis - Anna did indeed have a small stroke on the right side of her brain.  We have been referred to the stroke clinic at Children’s.  Hopefully, after our appointment with them we will know a bit more about what may have caused the stroke and the full extent of the damage to Anna’s brain.  We’re waiting for them to call us to set up an appointment.

Meanwhile, we’ve been working with the folks at Imagine!.  Imagine! is a local, private, non-profit organization established in 1963 that provides support services to people with cognitive disabilities (including epilepsy, cerebral palsy, Down syndrome, and autism).  We’ve been assigned a social worker (she’s wonderful — caring, engaged, efficient, knowledgeable) who is helping us navigate the various national, state, and county-wide support systems for kids with CP.  So far this has been a fantastic experience, and we’re amazed at how fast all this is moving.  Since our initial diagnosis on September 12, we’ve met with our case worker at our house to our many options.  To get the process moving we took Anna for an “interview” with a physical therapist (gross motor), an occupational therapist (fine motor), and a school district nurse (hearing, vision) with the folks at ChildFind on Monday morning.  (ChildFind is a national screening and evaluation program “designed to locate, identify, and refer as early as possible all young children with disabilities and their families who are in need of Early Intervention Program (Part C) or Preschool Special Education (Part B/619) services of the Individuals with Disabilities Education Act (IDEA)“).  After her interview we were told that Anna’s been approved for both PT and OT, and that the next step would be to locate physical and occupational therapists to work with Anna.

Well, last night (just a day later!) we learned that our Imagine! social worker sent us an email:

I have located therapists that have availability through an agency called Tiny Tim Therapeutic Outreach. This is a program in Longmont that serves children birth to three and beyond. They have a developmental preschool program as well.  I have several families using their services and have been very happy. I am planning to get all the information to them by this Friday so they can hopefully be ready to start the week of [October] 16th.

We couldn’t be happier.  Tara had already heard about Tiny Tim from the director of our daycare (Sunset Academy).  Tiny Tim is located literally around the corner from Sunset, and there are kids from Sunset who spend afternoons at Tiny Tim.  And so it turns out that the directors of both facilities are good friends who’ve worked together for years.  We’re hoping that Anna will be able to enroll in the Tiny Tim daycare when she gets to be about three years old if she still needs help at that point.

All in all we think this is great news. The MRI confirmed the initial diagnosis, and while there’s more to learn on that front it’s still good to know what we’re dealing with.  Meanwhile, with the help of the folks at Imagine! we’ve been able to start to navigate the support systems available to Anna, and to get moving on the path of therapy.

Therapy, we feel, is the key. Even just working with Anna ourselves we’ve seen such enormous improvement in her motor skills over the past few weeks and months, and we’re eager to get her paired up with some professionals who can show us how to do this right.

Moreover, it’s been great to get confirmation from our doctors, our social worker, and the therapists at ChildFind that Anna is developmentally “on track” in all other areas (and even ahead of the game in some areas like social skills).  At a time like this it’s been important to get some confirmation of what we, as parents, already believe: That despite some relatively minor problems with her left side, she’s a healthy, happy, bright, curious, active, engaging, wonderful little girl.

5 comments October 4th, 2006