January 28, 2014

And now obstuctive apnea

   I was right.  Sadie's snoring and breathing at night have become way worse.  The pulmonologist called with Sadie's sleep study results.  She stated that the results showed that she has severe central apnea (which we already knew), but it also showed that she has moderate to severe obstructive apnea.  They sent the results over to her ENT and they quickly called me within a few hours of receiving the results and said that after the review of the sleep study and her clinical presentation they suggest taking the tonsils and adenoids out.  Not a surprise to me.  I said that I agree, but I don't want to do it until spring.  Why?  Because she is going to have to stay I in the hospital overnight and I do not want her to be around all these flu and the other respiratory illnesses that are going around this winter.  The Dr said he was ok with waiting until spring because of the fact that her heart rate doesn't drop during her apnea episodes.  The current plan is to replace the tubes in her ears, and remove her tonsils and adenoids in April. 

January 27, 2014

Another MRI

   Sitting here waiting for Sadie to have another MRI done of her brain under general anesthesia.  This time we are not looking to see if there have been changes to her brain or to clarify her diagnosis.  We are taking a closer look at her auditory cranial nerves.  As I have mentioned in another post we are thinking about getting Sadie a cochlear implant(s).  The last MRI showed her auditory nerves were there and the right size, but they didn't zoom in on her actual ears.  The Dr stated that for an average kid the last MRI would have been fine and they would have gone forward with the surgery.  However, since Sadie is far from the average kid and she has multiple known cranial nerve issues, he wanted to perform this extra MRI to take an even closer look at her ear canals themselves and the cochlear nerve.  So here I am... again.
   Last time Sadie was under general anesthesia she did ok.  She came out of the anesthesia slowly, but boy was she grouchy and not herself for a couple of days.  I am praying that we don't go through that again.

*Sadie did great with the MRI.  She came out of the anesthesia like it was a nap.  No grouchiness or tears and she tolerated her food like a champ.  We looked at her records from the last sedation to see what the difference was. It was that they gave her morphine for some reason and then she was too sleepy waking up so they reversed it with narcan.  Her body must not have liked it. 

Sleeping beauty after the MRI

January 24, 2014

Sleep study #2

   Well after I posted my post yesterday, I got a phone call saying that they had a cancelation for a sleep study and asked if we wanted to take the spot.  Of course I said yes.  So here we are hanging out in the hospital/sleep lab.  At least this time they made her fashionable with a pink wrap around her head!
Even with all this stuff taped all over her head and body, she's still smiling.
Sadie is sound asleep and snoring, doing what she should be doing.
God bless her!
   Before I left with Sadie to come to the hospital tonight, Chloe started vomiting.  Great, that's just what we don't need in our house right now.  Lets hope and pray it was just something random that she ate that didn't settle right in her belly.  I have to laugh though, I gave my husband the choice to either take Sade to the hospital to do this study or deal with a puking a child.  He choose the puking child.  That's how much he hates the hospital.  

January 23, 2014

Tis the season for Dr's appt

   Specialists like to see their patients about every 6 months to a year.  Every 6 mo we get slammed with appointments.  I try to space them out.  Sometimes I think it's a good thing to space them out cause then I don't go on information overload with a ton of appointments in one month.  At the same time, with them all spaced out I feel like we always have a doctor's appointment to go to.  Not sure which is worse.  Anyways, since I have been sort of slacking on the blog lately I figured I would give you a run down on what is going on.

November- We saw her pulmonologist.  We discussed her breathing and apnea issues.  I think her apnea is getting worse.  It used to be that I never noticed her pauses in breathing.  Now, she snores so loud.  She sounds like an adult man and the pauses are more frequent and longer.  We are going to do another sleep study in March to see if her apnea is also caused from obstruction.

December- We went to her neurodevelopment Dr. It was a good check up.  Nothing new was discovered (that's always a bonus).  She is gaining weight and growing taller.  We increased her food and water intake.  It was a boring appointment, which I totally appreciated!

January- We saw her endocrinologist. We only see her once a year and draw some labs.  Because of her midline brain malformation she is at high risk for pituitary issues and thyroid issues.  Luckily, her hormones are all working the way they are supposed.  We also saw her ENT.  He looked in her ears and did some sort of a hearing test and that showed that her ears are full of fluid.  One ear she has no tube in it because we took it out a while back and the other tube is completely occluded.  So she needs to have her tubes replaced.  He also scoped her throat and said that her tonsils and adenoids are large and he would like to take them out.  He wants to do this when he replaces her tubes.  However, he wants to wait until after the sleep study to make sure they are actually causing an issue. 

February - We will see two new Dr's.  The first is an orthopedic Dr.  I want to check her spine and hips.  And I want them to give me an accurate leg length difference so that I can get her the proper size lift for her shoe so we can avoid back problems.  The second Dr is not technically new, but we have not seen him since Sadie was 9 mo or so.  He is a cochlear implant Dr.  I will save this story and how we got to this point for another post.

March-  We will hopefully be seeing the genetics Dr. for test results.  FINGERS CROSSED!!

APRIL- We will be seeing the mito/neurologist doctor and the heart surgeon again.

   As you can see, Sadie has been busy and will continue to stay busy for the next few months.  Bless her heart.  She is so good natured and just goes along for the ride.  She just smiles at the Dr's and lets them do what they want.  They always comment how happy and easy going she is.  I agree, she is my happy baby.


January 21, 2014

Check her out!

   Sadie always like to surprise me, especially when I am least expecting it.  This past Friday was no exception.  While working with her physical therapist and her visual impairment therapist she pulled off one of her biggest surprises yet.  Luckily, I actually was able to record it on my phone so that everyone could see it because there is no way that people that know my Sadie baby would ever believe what she did.  Even her daddy didn't believe it until I showed him the video.
  Sadie decided she wanted to sit up by herself!  Do you know how amazing this?! Yes, we had to help her into position because she refuses to put her hands down on the ground to help push herself up, but once she was there, it was all her (well except for a little bit of a brace of the knee on her lower back).  She sat for about 15 minutes perfectly content, with no complaining.  Every once in a while she would give a big smile as if she were thinking "check me out, this is cool" and then she would wobble a little and then it was right back to a straight face and concentration.  I so wish I caught that smile on the recording but I was on the wrong side of her and I didn't want to move in fear that she would fall over.
   I am so proud of her.  She works so hard for EVERYTHING!!

   If you notice her head is completely erect with no bobbles!  Also notice that she starts to fall to both sides and catches herself and corrects her movements.  This is HUGE for kids that have little or no cerebellum, because your cerebellum is what gives you your balance. It may have taken 2 years longer then a typical developing child, but who cares!!  She is doing it and it just makes it all that more of an incredible moment. 

*Yes, she has a front side pony tail!  Terrible hairstyle.  But that little turkey was in such a bad mood at the beginning of therapy and was not cooperating to get her hair done. I needed it out of her eyes so I did it while she was laying down.  Of all days for her to do something incredible that I want to capture forever, and she has a funky hairdo.

January 08, 2014

Always bringing awareness

Look at these cute g-tube covers that I had made for Sadie. 
Always representing and bringing awareness to Rare Diseases!

Always representing and bringing awareness for Mitochondrial Disease!

Always need to be stylish!!