The Results Are In

Porter Boy has mild obstructive sleep apnea. :( I'm wishing I would have pushed for this study sooner. The 2 most upsetting things for me to read in the report were:

1. "REM sleep is very low- normal, particularly at this age should be 25-30%." Porter's getting 12.7% (Did you know REM sleep has been proven to help in cognitive development? Not saying it's the only factor, but I was just reading a research study about it yesterday. Not to mention REM helps your child be in a better mood. In my mind REM is IMPORTANT!)
2. "As the result of 50 obstructive breathing events" This means Porter is on the index at 7.6- less than 1.5 is considered normal and that index rate increases to 14.4 when Porter hits REM sleep. (No wonder he wakes up for no obvious reason at all! No wonder sleep has been a challenge, he's working super hard to breath and the more relaxed he gets the more likely it is his airways will close off! It makes me sad to think about it.)

What does this mean? We're not sure. The ENT was very opposed to a Adenotonsillectomy before the study because, "It's hard on children this age." I believe him. Like I said, Porter is a mild case the ENT deals with much more sever cases all the time. However, since the study results he wants to re-evaluate. The Pulmonologist is recommending a Adenotonsillectomy along with the explanation that children with DS don't always response as well as they'd like to this procedure. Porter will need another sleep study and probably supplemental oxygen even with the surgery. SIGH. Guess it's better to know now than later but I think Porter probably should have been on supplemental oxygen since birth and hasn't been. That's a little hard for me to think about. So there you have it. We're meeting with Pulmo next week and hopefully the ENT as well so we can decide what the next step is.

Sorry I can't get any new photos off of our card at the moment so I grab a few of my favorite pictures of Porter Fresh from God. They're a nice reminder of just how quickly a new born captures your heart and what we have to look forward to in a few weeks. (P brand new and looking like my Daddy)

{See Grandpa was taken with Porter at first cuddle. Grandpa Gregg is SO excited to have a girl! He has done more for Priya's closet than anyone else. Every time I see him he smiles at me and says, "Look!" to some new darling pink outfit.}

{Pictures like this remind me of the tiny details that make having children phenomenal.}

Meet Paws

For Family Home Evening and in Celebration of World Down Syndrome Day we took Porter to Build-a-Bear. Thanks to his Uncle Tim & Aunt Megan for the Christmas gift cards that funded the outing. We let Porter kife his little sister's gift card since the whole experience would probably be lost on her and with her donation he did pretty well for himself. Sadly we forgot the card for our camera so we don't have any pictures of Paws being born. Porter had fun but was a little intimidated by the whole thing.

I think he has a new best buddy!

The Name Game On This Sunday

{He has such swagger}

We've been keeping a secret...

Baby Girl has had a name for a few weeks now. It's been such a frustrating process trying to find a name for her that we decided to keep it in the vault. LOL, that didn't last super long. My sister figured it out and then we decided to tell my family one night at dinner. Tonight while we were at Aaron's Great Grandma Hazel's 95th birthday party he had SO much fun protecting our secret. He decided he wasn't going to just flat out tell the name, but he was okay playing 20 questions. His Sister Karli was awesome and figured it out.

Aaron and I are faithful "Big Bang Theory" watchers and one night after an episode Aaron asked what I thought about the name Pria, a new character. I thought people might think we were naming our girl after a car. Being my husband, he understands how to convince me something is lovely. He knows meaning is the most important thing to me and combine that with a better spelling and I was sold. Priya - a Hindu name that means, "Beloved, Darling, loved one". That's beautiful and perfect for our girl! If you're not sold on it yet write it out in cursive with the middle name Lynn. Another day I'll post about all of our names and what they mean. I love researching names. I love how the spelling can change the meaning and open a whole different origin. Another time.

We had a very enjoyable Sunday morning. Porter has picked up on tickling the last week, so our morning cuddle time has turned into morning tickle time. We had so much fun trying to wear this boy out before church and here are some pictures we took while playing together.{Daddy's coat}

{Porter has figured out the camera and has turned into a major poser making getting a non-cheese photo out of him difficult.}

{All dressed up in his new suit}

{I adore how he's sporting his white pumas}

Sleep Study

We had Porter's sleep study last night and it was much better than we had anticipated. That doesn't mean there weren't tears and screaming, but Porter was such a good boy and calmed down for us easily. Part of the study is being hooked up to all kinds of monitors, either with sticky electrodes, medical tape, or this sappy soap. {I didn't protect this one if you want to click on the picture to see just how many wires he's connected to.}

Having this done to him when he was exhausted was the hardest part for Porter. Thank goodness for Aaron's smart phone and Curious George clips they were a nice distraction. {This is after the worst bout of crying. I know I write this often, but OH how I love this boy!}

We got Porter to sleep, tucked him into his crib and then the tech came in to hook him up to one more monitor and plug everything in. We didn't have the study done in the children's hospital like we thought we would but in a private office that was very nice, new and rather cozy for a medical office. There was a bed for Aaron and I. While I'm grateful I didn't have to spend the night sitting up in a rocker all I could think was, "For a $1000 over night stay I wish the bed was more comfortable." Needless to say my 8 month pregnant self didn't sleep, which was a good thing because I was quick on my feet whenever Porter's lethal little hands would start yanking at his connections in his sleep.

Porter did wake up once at 4am and we weren't able to comfort him without picking him up so the tech disconnected the wires so we could calm him down. It took an hour to get him back to sleep but he slept for another 3 hours after that and might have slept longer but it was time to go. {Porter free of his wires! Dad looking good ;) Aaron wasn't smiling as much when he removed the remaining pads from P's skin when we got home. Have I ever told you my husband is a good man?}

So really it could have been much, much worse. The reason we wanted to have the study done was to make sure Porter doesn't have silent sleep apnea which is very common in children with Down Syndrome. This type of apnea, while not as immediately concerning as obstructive sleep apnea, can cause damage to the heart and we don't want that! Thus, we decided to have this study done just as a precaution. We'll have the results in a few weeks and we'll let you know what's happening.

P.S. I got a phone call letting me know I DON'T have gestational diabetes!!! YAY!!!

My Birthday Wish

Help Bring Kareen Home

My birthday is a little over a month away so hopefully I've decided this early enough to give you some warning. The majority of you wouldn't be planning on getting me a gift and I don't want that to change. Birthday gifrts can add up to a ridiculous amount in the budget. However, there are a handful of you who may already be planning on purchasing me a gift or sending me a card. This year when you go to do that would you instead please donate the amount you've set aside for me to Kareena's adoption fund? HERE

I know it's not "FUN" but so often I lie in bed feeling powerless thinking about these orphans. The Cox family has been guided to Kareen and they've leapt forward to save this little girl with complete faith that the Lord will provide a way. I've been in their home and they are loving and delightful. I know every little bit must help.

If you donate please leave me a comment on this post or email me so I can send you a thank you note. I'm making all comments private because I think they should be.

All I really need on my Birthday is a well wish that helps me remember you're glad I was born and a few loved ones to share cake and ice cream with. Isn't it a lovely warm thought that this cute girl could have that same love offered to her and felt for the first time on her next birthday and you were a part of that?!

I'll be bring my princess home around my birthday it would do me good to help Kareen into her mothers arms as well.

Thanks,
Megs

Doctors, Lab Work & Hospitals... Oh My!

{Don't you eat with your feet on the table, too?}

This seems to be the motto of our week. The break down-

• Sunday - Meg starts seeing stars, 4 hours later Aaron wakes her to call the on-call doctor because he'd been researching her symptoms and felt it might be pre-eclampsia. He was right, the doctor scolded Meg for not going to the hospital earlier, called the hospital to let them know she may be sending her in but she got to spend the night in her bed because she's so convincing. An early Monday visit, followed up by a Tuesday visit and her blood pressure is high for her but still safe. The doctor thinks she had a migraine and just wasn't bothered much by the pain.
• Tuesday- Meg failed several tests. Iron supplements will fix the first problem. And a 4 hour test for gestational diabetes at the hospital tomorrow morning should give us an answer about the diabetes.
  
• Wednesday- Porter visited the ENT. His hearing results fall on the low normal side and we get to go back in 4 months to check that out again. The doctor was nice and ordered a sleep study that we'd like to have done and was able to get us in this Sunday night. Porter also visited his Pedi for phantom fevers (still waiting for lab results).
  
• The last few days- Porter has developed Amblyopia or lazy eye in the left eye. It's not happening a ton, but often. I feel really bad because this means he's having problems with his vision at least 50% of the time for his brain to cause his eye to do this. Bad Mom award goes to Meg. Since P's eyes are straight the majority of the time everything I've read suggests that minor intervention and this won't be a long term problem. 3 week wait to see the Eye doctor

{Those beautiful eyes}

Thank goodness Aaron's healthy! Really nothing major going on, I'm just tired of doctor's offices and our worst 2 appointments are tomorrow where there's a pretty good chance I'll struggle with the test I'll be having done because of my hyperglycemia and sleep studies aren't fun for anyone but especially a toddler.

In other news we've been practicing having another baby in the house and we're happy to say Porter is doing awesome; much better than the dog. (rolling eyes).{Tenderness}

He's going to be a great big brother!

DS Family- A question about the future

Aaron and I watch the TV series "Parenthood". We just watched an episode where one of the children finds out he has Asbergers. My eyes filled up with tears. Have you had this moment where you have to explain to your child that something is different about them? Albeit beautiful. How did it go?

I know it's a long way off, but can we prepare for that? I try not to think about the future too much, because it makes me worry and there is no point to that. We take it a day at a time trusting the Lord, only look to the near future with faith and clarity that any future with Porter will be a spectacular gift. But I can't help myself from asking this.