Wednesday, December 29, 2010

Back to the Doc…

I am sad to say that things have gone downhill for Ladybug this past week.  She has stopped walking almost completely and is back to how she was before the amazing day she began walking  {12/16}. She walked strong and progressed daily for about 6 days.  She even got to the point of walking across whole rooms on her own and even doing successful U-turns ;-).  She was getting more and more steady and although it was delayed-the progress seemed normal. She was so proud, so cute, and doing so well…

IMG_3682  IMG_3578IMG_3764  IMG_3937

We have been in a bit of denial, hoping it was just a fluke, but now after over a week we knew we needed to make the call. She started slowing down and this photo on 12/21…image[5] is the last we remember her walking and even then it was only a few coerced steps. I “denied” it even to the point of my husband forcing me to finally call today, as I didn’t want to deal with the possibility that things are back at square one. But, I made the call to our great pedi. and things are all back on go, and they are going fast once again.

She will go in tomorrow morning at 8:00am for her abdominal ultrasound and then her blood work after that {Daddy is going to take her and I will stay home with the boys}.  I will be calling to set up her physical therapy at the hospital and we will get the urine lab ASAP.

It still could be “nothing” and we haven’t given up hope that maybe the turnaround is a bit of a fluke—but the reality is things aren’t progressing normally.  We will keep the blog posted as always with any news or results.  Thanks for your prayers for our girl.  Hopefully she’s just stubborn and prefers to knee-walk, we’re still hoping!

Thursday, December 16, 2010

GOOD, GOOD News!!!

Look what she did today…




Yup, she walked, a LOT!!!!  She did it much more than usual this morning, but since usual is about 3-7 steps per week if we are lucky, I didn’t get too excited.  When my husband got home, we both worked with her and she just took off and loved it!  She was smiling, happy, and NOT refusing like she normally does!!!

We are praying this is a BIG day for her and that this might be a turning point, but are obviously aware that there still could be issues.  We are going to wait to call PT until tomorrow to see how she does, but will continue forward with everything else. We are so excited, I have tears in my eyes as I type this!!!!

She is so proud of herself!!! It is awesome to watch!  We are a tad bit proud of her too!!!!IMG_3506[8]

Thanks for your prayers for our girl, we are so grateful!!!

Wednesday, December 15, 2010

Physical Therapy & More

We have done a pretty good job of carrying on with normal life while also knowing that the unknown is still looming near us.  I finally talked with our pedi. on Monday morning who by today {Wed.} still hasn’t heard back from our neurologist to consult and then explain things to us.  Needless to say, we have the gears in motion to see a different neurologist.  Turns out our pedi. found an old friend she did residency with who is on the neurology team, and has offered to see us.  We are so thankful for this news and are now waiting for her call.

I did get the ball rolling on a full developmental assessment as we now feel she may have some speech delays too, as well as her physical delays.  We are waiting 4-6 days for the coordinator to call us to schedule the evaluation.

In the meantime Ladybug will begin physical therapy, I will call tomorrow to set that up at our children’s hospital.  We are excited about this not only for the therapy, but also so someone else, who is trained, will see her on a regular basis and be able to offer opinions also.

We will get the labs done on Monday, and also schedule her abdominal ultrasound for next week.  We are holding off on the ENT and Ophthalmology appts. until we consult with the new neurologist.

We are anxious to get copies of her lab work and her MRI report so we can study the results ourselves.  Both my husband and I are feeling very proactive about this and want to understand every detail about the situation that we are able to.

We have spoken a lot about this together and once again it seems a medical situation is drawing us closer together.  Back when he had cancer, we were united in a way I could never describe to anyone else.  The same thing is happening now.  I am SO thankful for our unity in things like this, as I am very aware that medical situations often drive a wedge into marriages.  I just pray that the unity grows.

Ladybug continues to be a joy and has even taken a few random steps this week.  She did this right before her MRI also, but within a few steps she goes right back to refusing to even try, drawing her legs up under her and screaming.  Even when she does take steps, they are so unbalanced and off. 

Her development in other areas continues to grow by leaps and bounds.  She continues to amaze us with her sign language {we own and watch 1, 2, and 3}, and has a wide “vocabulary” when asking her to point to certain things.  She just can’t actual say any of it!  It makes us very happy to know how much she actually understands.

Speaking of her development, I am SO thankful for this blog and the weekly “What I Love About You” posts I did.  I was able to go back through and document almost all of her major milestones because of those posts.  I now have my list all ready when we meet with the next doctor, and anyone else.

One developmental milestone she has certainly hit, and hit it awhile ago ~ the lovely temper tantrum…IMG_6780

The girl can definitely scream!  She’s even cute when she does that.  I think she was mad that I was taking her picture and not picking her up ;-).

Sunday, December 12, 2010

Unclear News…

I finally spoke with our neurologist and he was extremely vague with me.  Thankfully our pediatrician is awesome and had already shared some specifics with me, but he did not.  I am anxious to speak with our pediatrician on Monday knowing that she will help me understand what he {the neuro.} really thinks.

The details we know for sure…

  • She has “non specific” Delayed Myelination in her brain {in the cerebellum}. Myelin is the protective coating around the nerve that helps transmit nerve signals properly and fast enough.  This is related to all sorts of syndromes and conditions, many of which we have already ruled out through blood tests.  Some have not been ruled out and we will be exploring those. The neuro. himself never even mentioned this which was frustrating that he didn’t share details but was very vague.  We got the actual terminology from our pediatrician who called us on her own to discuss the finding with us.

The Neurologist has ordered the following steps…

  • Abdominal Ultrasound {looking for a benign tumor that could affect something having to do with balance}
  • Urine test {this is to rule out a “metabolism of glucose in the brain” problem that is easily treatable}
  • Another blood test
  • Ear, Nose, Throat Dr. Appt.
  • Ophthalmologist Appt.
  • Follow up Neurology appt. ASAP so he can reevaluate her in person.

We are peaceful and will continue with the road, knowing that it sill could be “nothing” and also that whatever it might be could easily be healed by the Lord before we ever even give it a name!!!  We are also at peace knowing that this may be the beginning of a long unknown journey.  No matter what-God will be with us and we will be fine.  We are not fearful or worrisome people.  We do get anxious about the unknown but not in a fearful way.  We just like knowing answers, no matter how bad the answers may be.

I hope to talk to the pediatrician on Monday and hope to understand more of exactly what they are looking for now.  Hopefully I can call and get her in soon for the other appointments she needs.

As for Ladybug herself, she is doing just fine!  She spent the day after her MRI sleeping mostly and now she is back to normal.  She continues to walk on her knees and will occasionally pull up to stand.IMG_6600I have tried getting her to walk some but since the MRI she has refused completely.  She pulls her legs under her and screams. 

Her spirits are high and she is happy and smiling mostly!  Knowing she is not in any obvious pain has relieved us a lot.

Friday, December 10, 2010

Ladybug’s Journey…

IMG_3281We have a bit going on medically with our little Ladybug and know that some of you have been loving her from afar since she was born!  We also know many of you are prayer warriors and will lift her up for us, so we decided to share her journey here on her blog as it unfolds. 

A bit of her back story to bring you up to speed…

At her 15 month appointment her physical development came into question since she wasn’t yet walking.  I wasn’t concerned at all since Pac Man didn’t walk until 15 1/2 months.  Time passed and she began starting to actually walk around 17 1/2 months and progressed for a few weeks.  IMG_9979She was never a solid walker but could make it a good ways on her own.  We even have several videos of her walking on her own!

Then, a few weeks later, she just stopped walking.  She refused to walk at all and even cried when we tried to encourage her.  She only walks on her knees, and uses that as her main mode of transportation now.IMG_3339It was then that my instincts told me there was something going on. 

We had her regular check-up at the pediatrician on 11/9/10 {almost 19 months}.  Our thoughts were confirmed and there is great concern that she is experiencing something that is affecting her physically.  She will barely even put her feet down and 99% of the time will not even attempt to walk now if we try to motivate her. She will stand up holding onto something and pull to standing, but just won’t walk and doesn’t even pull up as often as she used to.

We then saw a neurologist, and were very thankful for her pediatrician pulling strings to get us an appointment ASAP in a department that usually takes several weeks to get in.

The neurologist referred her to an orthopaedist to rule anything physical {broken bones, infection} out and we saw him within days and he ruled everything out within 15 minutes.  We were back to neurology and proceeding with scheduling an MRI.

Her first MRI was scheduled for 12/1/10 but she was coughing and had a runny nose so they had to cancel it.  Her second MRI was scheduled for 12/9/10 and that one happened.

It was a long day, as we expected it would be.  They took images of her brain and spine so she had to be sedated via IV for over 2 hours.  We are blessed to live near one of the best children's hospitals in the country, and they were wonderful.

She spent much of her waiting, crying and watching TV, she doesn’t like medical situations and can smell them a mile away! 


She was given a liquid sedative that made her very loopy and it was actually quite funny!  Then they put the IV in and she was a trooper for that.  She was very interested in the contraption on her hand and was a bit ticked off that she couldn’t suck that thumb {thankfully she sucks both}.IMG_6683-2

She came out of the MRI about 2 hours later and was very irritable once she finally woke up.  We went home within 30 minutes of her waking up and she slept all night peacefully.

Our AMAZING pediatrician has been on top of things from the beginning and has been calling us at home to support us through this process, we are SO blessed.  She called us at home the night of the MRI to tell us the initial findings.  We were VERY thankful to hear it wasn’t the worst we knew it could be-a tumor, cancer, or a major spinal problem.  They did however, find something in her brain, and we are waiting on the call from the neurologist to give us the details.   I will share that once we have them, he is supposed to call soon.

I will be keeping this blog updated for anyone who wants to follow her journey and pray for her as we walk this road. I also know that there may be someone out there struggling with the same things and I know our story could be used by God to encourage someone out there.  We share because it is God’s story.

Ladybug is a true joy in so many ways, such a blessing to our family.  I know many of you feel close to her by sharing in her life through Tot School.  Thank you for loving her from afar.

IMG_3280 She is signing “Thank You”

~I am tagging these posts “Ladybug’s Journey” so if you ever want to read all of them, just click on that tag and it will pull up all of her medical posts.