The majority of this blog focuses on Meghan.  But a huge part of Meghan's life is her older brother, Lucas.  This post is all about him!!

Eight years ago at 9:18am, God gave me a beautiful gift...my first child, Lucas.  Luke was delivered via emergency C-section after 50 hours of labor...yes, 50 hours.  It was a long 50 hours of many ups and downs.  It was around the 24 hour mark of labor that I asked for a c-section because I felt I just didn't have it in me anymore.  The nurses talked me into holding off on a C-section and to get rest.  Ummm...yeah right!  But...like the trooper that I am (LOL), I listened and knew I really didn't want to go the C-section route if I really didn't have to.  Time went on and Luke decided he wanted out...now!  Too quickly though.  As labor intensified, Luke wasn't reacting well and we started losing his heart beat.  My quiet labor room that consisted of myself, Luke's dad, and a labor nurse turned very quickly into a room full of about 10 nurses and a few doctors.  I will not go into details on how they got Luke's heart beat again, but I will say they finally got him to react and got a heart beat again and I was rushed immediately into surgery.  From the time I was taken out of my room for surgery until the time of Luke's birth is very blurry.  But I remember very clearly seeing my beautiful bundle of joy right after his delivery.  He weighed 8 pounds 7.5 ounces and was 21 1/4 inches long...just absolutely perfect!

Fast forward 8 years and I am very proud of the person Luke is turning into!  He wanted to be a big brother very badly and when he finally became a big brother, I saw a very nurturing, loving side to him that I had never seen before.  Of course, I also saw the side to him where he couldn't go without an hour of picking on his little sister, but, I guess that's what big brothers do!  Many, many times Luke has had to take the backseat to his sister's health, but through it all, he's always the first one to be concerned and ask how his sister is doing.  He always wants to know she is okay. 

To my little fisherman, farmer, baseball player and overall goofball...have a very HAPPY 8TH BIRTHDAY!!  Enjoy your special day!!

September is a big month in this house!  We started the month with the Hydrocephalus walk, it's Luke's 8th birthday on Saturday and it's also Hydrocephalus awareness month as well as Chiari Malformation awareness month!  For many people, they have never heard of Hydrocephalus or Chiari Malformation - so here are a few quick facts about both conditions:

Chiari Malfmormation
- Chiari is a congenital (present at birth) defect, but people can acquire Chiari due to a traumatic head/brain injury.

- Many people have Chiari but don't even know they have it, as they are asymptomatic.  There are many incidents of a person having an incidental finding of Chiari on an MRI as they are having an MRI for various other reasons.

- Research is currently being done to see if Chiari is genetic.  Currently, there has not been a Chiari gene found, but it isn't uncommon for Chiari to be found in more than one family member.

- 1 in 1,000 people have Chiari.

Hydrocephalus
- 1 in 1,000 babies are born with Hydrocephalus, making it as common as Down's Syndrome and more common than Spina Bifida or brain tumors.

- Hydrocephalus is the most common reason for brain surgery in children.

- Over the last 50 years, there has been no significant improvement in Hydrocephalus treatment or progress toward prevention or a cure.

- An estimated 50% of shunts fail with in the first 2 years.

- Children who have been shunted for Hydrocephalus and who have cognitive delay or motor delay are more likely to develop seizures than those without cognitive or motor delays.  A person can develop seizures at any age.

Yesterday, we walked in our first ever Hydrocephalus Association walk.  Our team, Team Meghan, had 22 awesome walkers and our team raised $1,155 - well over our original goal of $500!  I think that is pretty amazing being it's our first year walking!!  Thank you, thank you, thank you to everyone who walked and/or donated!  You guys are awesome!  I would love to make this an annual event and we have a big goal for next year.  I've been brainstorming of a few ways to fundraise already!  Here are some pictures from the walk. 

 

 

 

Whew!  We have been super busy here lately!  School started for Luke, therapy has resumed for Meghan, I've started a couple new daycare kids the last few weeks and we've been busy getting everything organized for the big WALK this weekend!!

I am so happy to say we exceeded our goal for the walk (by almost double)!!!  How awesome is that!  We also have a strong walking team of 20 walkers!  I can't wait to experience our first walk!  A huge THANK YOU to everyone who has donated and/or walking with us!  We couldn't do this without the help of you all!  There is still time to join our team or to donate.  To do so, just click this link: http://walk4hydro.kintera.org/faf/search/searchTeamPart.asp?ievent=1077849&lis=1&kntae1077849=EDB26336EA3A4B2AB8E6FDC2429943C7&team=5568491.  Luke and Meghan helped me make the team sign earlier this week and Meghan and I painted our toenails and fingernails.  Well, I painted my fingernails but am still debating on whether to paint Megger's fingernails or not.  I think we are ready!!!  HA walk, here we come!

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.

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 :)

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!!