Conner Got a Red Stripe!

I'm a bit behind on posting a few things I've been wanting to post, but here is a video of Conner getting a red stripe in Karate.  He's only been taking his lessons at the community center for about 6 weeks, and we were quite surprised when he got a stripe already!  We are so proud!  He works very hard and loves Karate.

P.S.  He won't let me hem his shirt and pants, so please excuse his sloppy look :)

 

 

Here is a photo of his certificate as well :)

 

 

 

Madi's School Photos

I think these are the best school photos I've ever seen!  I love them!

 

A Quick Update From Today's Dr. Fun!

Today was our third, and hopefully last, appointment of the week.  Our pediatrician, Dr. Nemivant, looked at Ramya's left breast (aka "nee nee" (Conner made this word up when he was little and it kind of stuck.  Normally we call body parts by their proper names, but the kids really like that one I guess ;)) that has the lump in it.  He says it's likely premature growth from a hormone surge (crazy!!) and he thinks it will go back down if she doesn't touch it.  He said that touching it and rubbing it will only make it bigger.  He gave her a firm talk about not touching it, and she seems to have backed off on poking at it, so that is good.  If I see her touching it, I just gently remind her the doctor said not to, and she stops.  Dr. Nemivant really loves Ramya and I am happy about that.  It meens a lot to have doctors see your children for who they are, and not just their disability or another patient.  He told me that Ramya is very sweet and he's glad she found our family.  That's the kind of doctor I want caring for her for sure!

Two Appointment Updates and My First Kiss!

Whew.... another busy week!

Tuesday we rushed off to Mesa to see our neurosurgeon, Dr. Moss.  He reviewed Ramya's CT scan and shunt series.  He's stumped as to what kind of shunt she has and why they put it in how they did, but the good news is, it's working!  He has no plans to touch it since it's working, and that is exactly what I wanted to hear!

Today we went down to Ron at Hanger and he got her all set up for KAFOs (leg braces that go from the ankle to the thighs).  He said he'll have them ready in about 3 weeks, so that's awesome!  We can't wait!  Ramya did great during the appointment and was very excited to pick the purple butterfly print for her new braces.  We set up an appointment to get her braces and get Madi's fixed (she grew again and needs them adjusted) in 3 weeks.  Ron and his office assistant were very excited to meet Ramya.  They have been waiting for her!

 

 

Tomorrow we are off to the pediatrician to have a little lump on Ramya's left "nee nee" looked at.  It just popped up and it's bothering her, so I wanted to get her in ASAP.  It feels like my cyst does, and I've never felt something like that on a child before, so we're off in search of some answers.

 

Saturday is our big open house to celebrate Ramya and so that all of our friends and family can come and meet her and spend time with us.  We are busy getting ready and can't wait!  We hope to see you all there (well, those of you that live locally that is ;))!  If you need our address, please email me at jamie_lugo@hotmail.com :).

 

OH!  Before I forget, I got my first kiss today!  She planted a big one right on my nose!  I give her kisses all the time, but I haven't gotten a spontaneous kiss from her until today.  Now I officially have gotten a hug, a kiss, and told "I love you".  Life is good!

 



 

Easter in Our Neck of the Woods

The kiddos had a fun Easter.  We were sad to miss Church on Good Friday, but didn't get out of the hospital from our ER visit until 5pm.  We were able to go to Church on Easter, though, and were thankful for that!  Ramya comes in service with us and is enjoying Church.  It is still a little over-stimulating for her, but it's getting better. 

We went to my parent's house to celebrate with my side of the family.  We ate lunch, looked for baskets, and had an egg hunt.  After that we went to David's brother sister-in-law's house for dinner and another hunt with his side of the family.  It was a lot for one day, but we had fun!  Here are some photos from our day...

 

 

Easter baskets from Grammy and Papa

 

 

Spiderman web fun

 

A little (slow) ride on the quad with Cousin Lauren

 

Daddy and his girls

 

Grammy, Papa, and the squirrels

 

Uncle Jimmy and Conner

 

 

The kiddos with Cousin Nathan and Cousin Caleb

 

Uncle Mark and Cousin Caleb

 

David insists on making odd faces....

 

 

 

Ramya loved her first Easter, and of course, loved the jelly beans!  It was so fun!

 

 

Ramya's First Haircut!

Ramya's hair is starting to grow (YEAH!) and she is very excited!  In the past, her hair was shaved and kept short.  She is wanting to let her hair grow out and really wants to be able to wear ponytails.  I was wanting to keep it as long as I could for her, but was also wanting to touch it up a little to try and start to get it even. 

This was our first attempt at a ponytail.  She was really wanting one, and was so happy when I could give her one!

We were all due for cuts, so we headed down to my hairdresser, Ashley.  Ashley has been cutting my hair for probably around 10 years.  When Conner was a little guy, I tried to take him to a kids place to get his hair cut and he was not a happy boy, so we left.  He watched Ashley cut my hair, then he wanted her to cut his.  It worked out great, so we just stuck with it.  She's been the first one to cut all of my kiddo's hair, which is pretty cool :).  I had Ramya watch Madi get her hair cut first, and then it was her turn.  Oh boy was she excited!

 

 

She loves her new style, and it's very cute on her!  It's so fun watching her with all her new excitement and firsts :).

 

I wanted to share another sweet photo of Ramya.  She now asks to be rocked every night, to which I happily say yes to.  It's great for our bonding and attachment, but it's also just great therapy for her as well.  It's a win-win!  Here she is snug in my arms...

 

 

 

It doesn't get any  more perfect that that!



 

Home... Feels SO Good!!

We are home.

I feel like I could end the post there and it would be just perfect ;).

We were discharged at about 11:45 am, then met David, Conner, and Ramya downstairs for lunch in the cafeteria before heading over to Ramya's urodynamics testing and urologist appointment at 1:00.  The urodynamics test went well.  Ramya is able to hold more than we thought she could, though she leaks a lot still.  The doctor thinks her bladder size is decent, and it doesn't seem to be too spastic or rigid.  He's thinking the leaking might be due to poor muscle control.  He thinks if we bulk up the area (not with botox, but another substance I can't remember the name of right now, I think it starts with a 'd'), she may not leak and she also may not need augmentation surgery.  He wants us to come in for an out-patient exploratory surgery so he can see if this is the case.  He also wants to check her mitrofanoff and try to get that up and working.  I asked if he can clean up her granulation tissue as well during that time and he thinks he can.

I talked to Dr. Zuniga more about Madi's episode, and he is in agreeance with me.  It seems they get "lucky" and find bacteria to blame for the seizures, and just don't explore further, even though neither of us (though I'm not doctor so I know my opinion only matters so much to them) think that is what is causing them.  Because Madi is cathed, and because she has renal reflux, she is basically always colonizing bacteria.  You could culture her at any point in time and find bacteria.  If that was the cause of the seizures, that poor girl would constantly have them!  If she had a bad UTI she was symptomatic for, or if she had the underlying bacteria plus something else going on, then that would make more sense to me.  I'm praying that I'm wrong, though, and the antibiotics do the trick. 

After we got home we went to see The Croods and eat ice cream. We laughed a lot and it is just what we needed!!!  After we got home and got ready, all the kiddos piled on top of me to go to sleep, as they are all missing momma and more clingy.  I tried to sneak out of the room, but Madi woke up looking for me.  She's a lot more on guard right now and worked up because of what had happened. 

Heading to bed soon and praying for uneventful and restful sleep tonight!!!  I pray the same for all of you!