Mighty Meghan

Mighty Meghan

Tuesday, August 27, 2013

Where did the summer go?  This summer flew by so quickly.  Luke is back in school already!  We had a great summer and we got to spend lots of time with the kids, which is what is most important to me right now! 

Now that school is back in session, Meghan will get back into therapy twice a week.  This will be great for Meghan!  We recently learned from Meghan's speech therapist, that Meghan has Childhood Apraxia of Speech.  CAS is a motor speech disorder.  Kids with CAS have problems saying sounds, syllables, and words.  The brain has problems planning to move the needed body parts for speech (lips, tongue, jaw).  The child knows what they want to say, but their brain has difficulty coordinating the muscle movements necessary to say the words.  I think we've known for a few months that there was something off with Meghan's speech.  She is SUPER smart and she knows what she wants, but has difficulty putting her wants into words.  We are going in the right direction by doing sign language and speech therapy with her.  Meghan is due to have her 6 month review of her IFSP (therapy plan and goals) in the next couple of weeks.  She will then be re-tested in February.  How she scores will tell us what our next step will be. 

There is only 3 more weeks until the Hydrocephalus walk!  So far, our team has 18 walkers!  If you plan on walking, please register online in the next week or two!  The walk coordinators would like to have everyone registered atleast a week before the walk, so they can plan accordingly as to how much food and beverages to plan on.  If you need help registering, let me know and I'd be happy to help!  Our team's goal is to raise $500!  So far, we have raised $380!  We are so close to our goal!  If you, or someone you know, would like to donate to our team, be sure to collect the donations before the walk!  To donate, enter donations you have collected, or to register to walk, just click this link: http://walk4hydro.kintera.org/faf/search/searchTeamPart.asp?ievent=1077849&lis=0&kntae1077849=0D4E954D632D4981A2CF781E6E025D35&team=5568491.  Help us reach our goal...every little bit helps!  All of the money raised goes to the Hydrocephalus Association to fund research for a CURE!  As of a couple days ago, there were 17 teams registered.




Friday, August 9, 2013

Oh little Meghan...the stories we will share with you when you are older are endless!  I feel like I have aged 10 years in the last 1.5 years :)  But...I wouldn't trade any of it for the world because the journey we are on with you has taught us so many things.  It has taught us what compassion truly is.  It has taught us not to be so judgemental of others.  It has definitely taught us patience.  It has taught us more about the human body than we ever imagined we'd know.  We've learned funky terminology that the doctors talk to us about.  But most of all, it has taught us how unbelievably strong such a little girl can be!  You are amazingly strong and we are extremely proud of you!  Yesterday, we were told of a slight setback.  Your AFP test, which is a tumor marker blood test, came back at an elevated level.  Elevated numbers are not our friends :(  We want really really low numbers.  But this is okay, because it is just another learning experience for us.  The increase isn't an extreme jump from April, but it is considered a red flag to your doctors who keep a close eye on you.  Your number could be elevated because it is picking up on something in the very very beginning stage, or it could just be a fluke.  Mommy and Daddy think it's just a fluke and that it's just your sneaky way of keeping us on our toes!  We are going to have you rechecked in 3 months and at that time, we hope to hear your number went back down to the normal range.  We don't want another number increase.  Mom and Dad are going to try really really hard to think positive!  We sure hope the next 3 months go by fast so we have more answers!  We know you will keep us very busy, which will help the time pass!  You just keep being the happy, adorable little girl that you are and we know that everything will be okay :)

Wednesday, August 7, 2013

Meghan had a long day of therapy and doctor appointments today.  I had the day off so I was able to sit in on therapy...wish I could do that more often!  After therapy, we left for her doctor appointments.  I was nervous about her ultra sound - last time she did not do so well with it.  Today, she was such a trooper!  She walked right in the room when the ultra sound tech called her name and I laid her down on the table and she let the tech do what she needed to do!  No crying whatsoever!  I think we were in and out in 15 minutes!  Then we headed up to the Urologist appointment and she walked right with the nurse when we were called back!  This is pretty huge as Meghan has been very apprehensive at doctor appointments so it was great seeing her be so willing to go with the flow today! Today was the first time meeting with the Urologist and he was super!  Meghan has a little more fluid in her right kidney today than she did 4 months ago.  However, this could be because she had a fuller bladder than last time.  The severity of Hydronephrosis is graded from 1-4 with 1 being minor and 4 being severe.  Today, Meghans was still a Grade 1, but closer to being Grade 2 than she was in April.  Because Meghan has never had a UTI, he feels comfortable not doing any invasive testing right now and waiting a year to see her.  However, if she would get a UTI within the next year, we would automatically have to do a VCUG.  Although we are waiting a year to see him again, her Hydronephrosis will be monitored via ultra sound every 3 months (for a different condition) and if the fluid continues to increase, we will be back to see him.  He did let us know that because of her syrinx on spine and Hydronephrosis, she could be difficult to potty train, but time will tell!  Otherwise, everything looked good on the ultra sound images and no tumors were seen!!  I always feel relieved when I hear that!  Meghan also had the AFP test (tumor marker test) done today and we should have results by Tuesday.  We waited 9 weeks to hear results of the chromosome test, and we just so happened to get those results while we were at Childrens!  Everything came back good, but she does have a duplicated area on either the long or short arm of the X chromosome (I can't remember what the geneticist said).  From what I understand, females with a duplicated x chromosome have no other health conditions associated with the duplication.  I am happy but a little bummed that we don't have an explanation as to why Meghan has the conditions she has.  The geneticist was bummed she wasn't able to provide us with answers yet, but we will be back to see them in November and have another geneticist look at her and possibly have more in depth testing done.  She also couldn't give us an answer as to if any of Meghan's conditions will be passed down to her kids until further testing is done.  She did put in a referral for Meghan to see an Endocrinologist.  We all agreed it is time to find out if Meghan has any growth issues going on - especially since there isn't a chromosome issue affecting her growth.  She is at a stand still height and weight wise.  Meghan knows no different, but it literally breaks my heart when I see a 15 month old tower over my 26 month old.  It could very well be that Meghan has no growth issues and will just be small, but as parents, we want solid answers from professionals!!

Of course, a trip to see the doctors in the cities just wouldn't be complete without a stop at Chili's!!  We love Chili's!


Sleeping beauty after a busy day!  Tuckered out!!