Big Boy Bed!

Parker has moved into a big boy bed recently.  He's been in his toddler bed for about a year now but really likes to snuggle at night.  As does Hannah.  When you do the math, you can see how four of us are squished like sardines in our King size bed!  

The truth is, we enjoy sharing a family bed but our children are the king and queen of bed hogs!  Poor Michael would end up half on the bed and half on the night stand.  I would end up on the last three inches of our mattress.  Our kids, however, would be spread out like eagles, snoring away quite comfortably.  Completely oblivious to our body aches, stiff necks and sleep deprived eyes!

  

Parker has seen how one of us gets to snuggle with Hannah in her own full size bed and began to request snuggles in his toddler bed.  So we decided to buy a full size bed and bid farewell to his crib.  This was bittersweet for us because we aren't having anymore babies.  While we had excitement in our eyes over a big boy bed, there were some tears over not having a crib anymore.  sniff, sniff.  (both kids had convertible cribs, so even as toddler beds, it still seemed like their crib).  

Parker is doing amazing in his bed.  He actually sleeps better than he ever has on his own.  And it's nice to crawl in with him and snuggle up together!  He looks tiny again too, with all the space around him.  First thing in the morning though I am reminded how big his personality is!  He is so proud in the morning to share how he spent the whole night in his bed (he forgets that most nights we spend a few hours in there with him, usually between 1 and 5am, at his request).  

Parker is a great kid, really funny and energetic.  We are lucky to have him, without a doubt!  He brings so much to our lives, including great dragon roars, silly jokes, a fantastic giggle and a smile that will melt your heart!  We're so proud of you, Parker, for sleeping in a big boy bed!

Clear Eyes!

Today was Hannah's quarterly eye exam.  JRA has an unfortunate connection with severe eye diseases like uveitis, which is a silent disease leading to blindness.  JRA kids who have a positive ANA (Anti-Nuclear Antibody) are at a high risk for such eye diseases.  For this reason, we see a great pediatric opthamologist who is able to see if white blood cells are present, which is the cause of uveitis.  

We were glad to hear that Hannah's eyes were 'clear' but surprised to learn that because the arthritis has worsened, the risk for Uveitis is decreased.  hmmmm.  Interesting, we get to worry less with her eyes, because the arthritis has worsened.  The human body is just amazing if not a bit confusing!

The photo represents an early birthday visit from Grandpa Bucky and Grandma Georgia this weekend.  They hadn't a clue that Hannah's favorite author right now is Jane O'Connor, better known for her "Fancy Nancy" collection of books.  Not only did Hannah get two copies of Fancy Nancy books but an entire dress up kit, as featured by our very own "Fancy Hannah".  Thanks Bucky and Georgia, we're so happy to have you in our lives!

Sibling Love!

As an only child, it warms my heart to know these two will always have one another as they go through this journey called life.  

Boston Visit

We had our follow up appointment at Children's Hospital today.  I'm happy to report that Hannah's Rheumatologist, Dr. Sundel, was pleased with Hannah's progress.  YIPPIE!  I was, of course, hoping for that kind of news but have prepared myself for the unexpected.  After all, our last visit in January was sure to bring good news.  And that was anything but.  

Hannah's range of motion is impressive considering the brief time she's been on Enbrel.  Her swelling is down some and it doesn't appear that the arthritis has spread to further joints at this point.  We are soooo very relieved and remain optimistic!  In fact, we don't have to go back to Boston until June!  We've never gone that long without a doctor's visit, woo-hoo for us!

So for now, we will continue what we're doing medicine wise.  We will increase her O.T. a bit since the decrease in inflammation allows her to do things she normally wouldn't.  Dr. Sundel mentioned some possible changes in the future should her body not progress enough.  I took the denial card on this news.  I don't want to know right now other med changes or injections or whatever the case may be.  I will worry too much and my imagination will get the better of me.  I want to remain optimistic and will continue to believe that this medicine is exactly what Hannah's body needs to get into remission!

The photo is of Hannah with Jennifer Vaughn, anchorwoman for WMUR 9 News.  Jennifer came out to our house a couple of weeks ago to interview us to help spread the word on JRA.  The segment is scheduled to air during the 5 O'Clock hour tomorrow or Friday!  Hope you can tune in!

Another good one!

Today was shot day for us.  It went incredibly smooth and quick.  Michael is out of state on business this week but fortunately I have a spectacular friend whom I lean on often for support.  A special thank you to Ross for hugging Hannah while I administered the injection.  And I have to add that Hannah's friend Jamie was so helpful in distracting Hannah with knock-knock jokes!  Thanks J!  And then there was the added distraction of Parker pushing little Annie to the ground causing Annie to wallop into tears (sorry Annie!).  And remember I have the shot down to 3 seconds, clearly a LOT can happen in a mere 3 seconds.  

Hannah cried again, but not until after the needle was out!  Her crying didn't last 45 seconds and later we talked about how it hurts but only for a short time.  I'm so glad this one went smoothly and will hope for the same results for the shots to follow.  

This photo was taken today.... a couple of cool kids with their shades on!  It's been a snowy winter for us, this will probably sound silly, but there's actually been too much snow for the kids to play in!  Seriously, if they were to sink in, we would never find them!  Today we were presented with warm temps (well, warm for NH!  A blistering 45F) and the kids were loving being outside.  Hopefully the fresh air will guarantee a full night's sleep in our house!  Aw, who am I kidding, there's never ANY guarantee when it comes to sleep!

Fourth time's a charm!

I gave Hannah her fourth shot on Thursday.  It went sooo much better than the last two, thankfully! 

 

Michael was home for this shot.  I gave Hannah a quick reminder that I was preparing her meds as she continued to play.  Michael sat with her while she iced her leg and then held her on his lap, with her face buried into his chest.  I rubbed her leg with alcohol and began explaining all the steps, quickly but thoroughly, so there were no surprises.  I gave a quick count down, poked and removed, in three seconds or less.  It wasn't until the needle was out that she began to cry.

 

 As always, Hannah immediately climbed onto my lap for a snuggle while we iced her leg again.  I welcome these snuggles the most since I am the one inflicting pain and it feels way more natural to snuggle your little one rather than cause pain.  There was a slight bruise the next day but that is normal.

Phew!  Now we don't have to think about it again until Thursday!  I'm so proud of Hannah for being so brave!