6 Month Neurology Checkup

Hard to believe it has been six months since C first saw the neurologist, but it has!  

Since then she has had a CT scan that revealed a possible stroke either in utero or shortly after birth.

Since being presented with that information I have fought for PT and OT services for my sweet girl... Despite the neurologist saying that she was doing fine where she was and not to pursue it further.

But that neurologist just doesn't know me or my quietly determined girl very well.  : )

We have been in both PT and OT (eventhough we were told that she didn't need PT at first.  Mama kept asking/praying).

With all of the appointments we have, I am thankful C is so patient.  But after waiting an hour...

Or over an hour for the doctor...

The same old book gets a little boring...

And I was not going to let her look at Ripley's Believe it or Not...

So you get creative with your reading

And re reading

Of the one book that you do have!

You gotta think outside the box sometimes!

And jump in with both feet!

But before a somersault was attempted, the doctor finally came!

She was very impressed with C's progress, but told me not to expect her left hand to gain much more if any function.  I was disappointed to hear that (but my OT completely disagreed!; )) but I am not going to stop doing what we are doing.  We all see progress and my Lottie Pie is determined to keep on trying!

We are scheduling an EEG for Charlotte later this month to check on her after a possible seizure.   We are not too worried, but C has had a hard couple of months and we want to be sure we are doing all we can for her.  We would really appreciate your prayers.

If everything is normal, we will have one more six month check up then yearly after that if everything goes well.

Thanks for praying for our sweet girl - she's definitely worth all that and more, including super long wait times and numerous doctor appointments!

CT Scan and Results for Charlotte

On Monday, we had C's big CT scan appointment.  She was a little nervous, but we were able to get her excited about being the only one to get her picture taken as well as eating special bread (her favorite) afterward.

C picked a friend to bring with her - to my surprise, it was my old doll, Lisa!  She picked it because it was mine when I was a little girl. : ). It made my heart happy to see my old friend loved by my own little girl.

The girls were well behaved.  It's nice to have people smiling at your children wherever you go.  : ). They are both little Sunshines!

And they are both so good with each other and for each other.

The gentleman who ran the CT machine LOVED Charlotte.  And thankfully, C was calm and didn't falter for a moment.  Thank you for praying for her.

The CT tech kept saying that she was so cute and sweet.  When he placed the little pillows around her head to steady it, she let out a clear, precious little, "Fank you!"  He melted then and there!  He was so enamored with her that he let her push the buttons to run the machine.   He also quickly scooped her up when she was done, which surprised C and I!   On a positive note, it was the first time she looked distressed about a stranger touching her and tried to come to me and get my attention.  She didn't want to be held by a stranger!  This is huge in the area of attachment - something we've really been working hard on!

I was so proud of her - no tears!   I promised her bread (her favorite treat) after the CT scan.  We stopped at a local coffee shop and the girls devoured a sausage and cheese biscuit and an orange and pecan scone.

They really, really wanted more...

And so did their mama...

C lobbied hard for the brightly colored sugar cookies.  FL wanted chocolate... Or everything, really.

But we just enjoyed the treats we had.

And I promised them new backpacks and a short visit with friends.  They were thrilled with their backpacks!  A yellow one for Flora Lin and a light pink one for Charlotte!

Later in the week, we recieved the results of the scan.

The spot affected in C's brain is on the right side and so very, very, very small that some might debate that it is even there!  This is fantastic news!

However, I feel like this puts us back at the beginning again.  The neurologist called it a malformation, not a stroke.  I spoke with the assistant, not the actual doctor, so it was a bit frustrating because she couldn't answer all of my questions.  We don't go back until October, but are advised to continue doing easy for her left side.   Maybe I shouldn't be pressing the issue so much, but the physical therapist felt we might want to see an orthopedic doctor about C's spine.

How hard should I push?  How much should I put my child through?  Am I doing too much?  Not enough?  Should I continue to push therapy?  Specialists?  Should I let it all go?   She functions well... But should I settle?   I am her advocate...  the only person in this world that is fighting for her.

I am so thankful so little of my daughter's brain is affected, but I have this feeling that there's more to this.  That feeling just won't go away.  So I'll pray and press on.  Joyfully, though.  It is a privilege to be able to fight for such precious little people.  

I'm so thankful for your support and prayers for my family and my children.  Keep them coming and we'll keep you posted.  

CT Scan Prep for Charlotte, Farm Style

Why do these two girls look so happy about bedtime?

Well, because it's NOT bedtime!  They're about to go through the CT scanner at The Leaning A Hospital!  The pillows help keep our heads very still.  The big blankets protect us from radiation.

Of course, we have highly trained scanner technicians!  I know the scanner may look like a shirt box and a calico cat, but trust me, it's way, way more!

The humming/purring sound the machine makes can be a little unnerving.  However, our technicians are here to reassure you and provide the utmost in quality care!

Practice makes perfect!  

Our sweet Charlotte is having a CT scan on Monday to confirm a stroke that most likely occurred early in life and tell us what areas of the brain might be affected.  We would appreciate your prayers for calmness for Charlotte (no sedation due to her heart condition) and for minimal areas to be affected.

Thank you!  : )

Physical Therapy and Speech Therapy Times Two!

Today was another big day for these two precious sleepyheads (aren't they too cute in pajamas?!)!  C and FL had their first physical therapy and speech therapy appointments.  They picked two horses (Rea Rea and Mark) to go on the journey with them!

We were able to print and fill out all of the paperwork ahead of time, which was fantastic!  The girls found a quiet corner to wait and read books to Rea Rea and Mark.

Everyone in the office was upbeat, helpful and pleasant.  It really makes things so much nicer!

Sam went with FL to speech first and C and I headed to PT.   Then we swapped activities.  Both sets of therapists were very impressed with the girls.

In speech, Flora Lin had great language comprehension!  Sam and I both have felt this all along, but it was good to have it confirmed.  She will often pretend not to hear you if she doesn't particularly want to do what you're asking!  Though having her palate repaired later than normal in the US, they feel she will have no problems catching up quickly.   She is behind on sounds, but it is impossible for someone to make consonant sounds with an open palate.  I was a little concerned with her using the signing over speaking, as it is easier for her just to sign something than to try and say it.  The therapist told me that it can become a crutch, so we will keep tabs on this!   FL will be having speech therapy once a week for an extended period of time.   Again, they were impressed with her and very hopeful, so it was great to know that our hard work was paying off!

In physical therapy, we were concerned about Flora Lin having low muscle tone (couldn't sit up in the bathtub well) and delayed gross motor skills.  In January, the International Adoption Clinic made us aware of this issue with her gross motor skills and we have been working on it diligently ever since.  I am happy to report that FL is now on the low end of normal for muscle tone and her gross motor skills are just great (she always had good fine motor skills)!  She does not need any physical therapy or occupational therapy!  Yay, Flora Lin!  Praise God for progress!

And Miss Charlotte?  In speech therapy she blew them away and is ahead of the game!  : )  My concerns about her pronunciation of s/consonant sound combinations (see goo bus for school bus, see gweter for sweater, eye see gream for ice cream) in words is a skill that is usually reached at about seven years of age.  They gave me a chart that had ages and the sounds expected for each one.  They give this chart to all of the moms that freak out a little too much over everything their child does or doesn't do.  ; ) Both speech therapists thought she was doing fantastic and to keep doing whatever we are doing with both girls.

In PT, Charlotte did great, but the therapist agreed that her hand/ arm is not 100%.  She did too well to qualify for any physical therapy (yay!) on a regular basis, but she did give me a list of things to do at home while we are on the waiting list for occupational therapy.   C has low muscle tone and strength I her upper body and neck.  We think that perhaps she skipped the crawling stage and didn't develop her arm, shoulder and neck muscles properly.  We are hoping to be provided a special tricycle at no cost that Charlotte tried out today.  It had pedals where the hands are so upper body is developed as well as a parent handle to give extra support and encouragement. We were put on a wait list, but hope to hear soon!  We will also be working on tossing weighted balls back and forth, climbing, some sort of hanging trapeze, wheelbarrow and crab walk in and running like an animal on all fours! : ). I think we'll be spending lots of time at the park!

Sam and I are so thankful for all of the progress that our girls have made.  One therapist commented, "Farm therapy is really working for your girls!"  The farm can be a lot of hard work and bringing the girls home hasn't been easy for any of the four of us, but it is so wonderful to see all of the things God is doing in all of our lives.   

We are also thankful for all of those that gave in so many ways.  Much of the gifts and gift cards were used towards buying things that would help the girls with their challenges (Ms. Lyn and Mr. Jim, yours bought this fantastic indoor trampoline!).  Thank you, thank you, thank you.

When we were paper chasing all the way through bringing the girls home, Sam and I prayed a very simple prayer for both girls each day.   We asked God to meet their needs, give them someone to love them and give them a sense of hope.  He has done just that, and I am thankful for those who did their best to care for Charlotte and Flora Lin until they could be forever in our family and I am thankful that I get to be their family.

Charlotte's Neurology Appointment

This week we had many appointments for the girls, and one included a trip to the neurologist for C.

Our pediatrician gave us the referral.  The doctors at the IAC were hesitant to send her to one, but the more I thought about it, the more I wanted to look deeper into C's weak left hand and unique way of running.   Most, including the doctors, have politely brushed off my concern because C hides it so well.   So, I was very glad to be having this appointment, anxious for answers and prepared to provide whatever evidence was needed to convince the specialist that my daughter needed help.  

Thankfully, I didn't have to convince her of anything.  In a matter of minutes, she saw what I was seeing.  The neurologist suspects that C had a stroke at some point, but does compensate very well.  What I didn't think about is that now C is at risk for seizures.   She described what a mild seizure and a very serious seizure might look like, and what to do in each case.   

 It shook me up a little bit because it reminded me that in some ways, Charlotte is still medically fragile.  I forget about her heart defect all. of. the. time.   But it's there.  Challenging and life threatening things have happened to this sweet, gentle little girl.  Seizures can be big or small, frequent or a once in a lifetime event. 

 But I could loose her.  

A year ago I didn't know if her file would ever be released to us.  Nine months ago I didn't think China was going to ever send the necessary paperwork.   Four months ago I held someone in my arms that I didn't even know.  Now she's a part of me like nothing else ever has been.  

My feelings toward families who have medically fragile children or children that have died are much deeper now than they were before.

Children are precious.   

Life is precious.

I'm so thankful for these sweet ones and all that they bring to our family.  I am thankful that I can at least help my daughters in this way, that I can give them good medical care.

Of course, I'm doing my best to pour out so much more upon them.

My little Dolly (as she likes me to call her) will be having a CT scan next week to confirm and determine the severity of her stroke.   Like the neurologist said, we can't undo what happened, but with therapy and support we can help her succeed that much more.

Please pray for calmness for Charlotte as she goes through something very scary for her.  Please pray that the affected areas are minimal.

Thank you, from a very precious little Dolly's slightly worried mama.