Small Strength

Meagan had a very good first weekend home.  She was right back to her normal activities....playing with her sisters, toys, and books, drinking her bottles well, and tolerating all her tube feeds.  We notified Mrs. M (PT) and she had space available for Monday so we took it.  I was anxious to have Meagan's arms evaluated and see if there was any improvement.  Much to our relief, Mrs. M saw a complete turn around in Meagan's arm weakness! She said Meagan still hyper extends a little, but, that is simply from damage already done the last few months when Megs was compensating for her arm weakness....so her ligaments were stretched.  Mrs. M said that for now, though, she sees no new weakness and actually saw Megs engaging her arm muscles again just as she had been doing in February.  She said we will still use the arm braces to help those damaged ligaments stay in place as she builds back her arm muscles this summer and hopefully with time we can correct that.  I was very happy to hear all of this because although we suspected her arms were due to the same issues causing her pain episodes, it was still just a hunch.

Mrs. M said that even though arms are looking better, we are still going to continue to work on standing and cruising.  She was so happy with Meagan's supported standing and said her legs seem to be stronger.  She said Meagan's hips are still very weak though so she wants us to start facilitate some supported cruising with her so she can build hip strength through side stepping.  Meagan tolerated this well and so we will be working with her on getting that better and better to help with those hips. Mrs. M said if we see improvement with the hips she will bring a gait trainer for Meagan to try soon.  She thinks once Megs gets over the initial fight of being strapped in, she will love the freedom to try and move her legs on her own.  After such a great PT session, and getting the confirmation I needed about Meagan's arms, I decided to go ahead and email Blair and Dr. R to let them know.  I sent them a picture of Meagan working at PT and told them the great news. Although the news was good, it is just a small step to get Meagan to where she was at the beginning of February...but I'm sure in no time we will see full improvement in her arms.

Working so hard

Meanwhile, although Meagan had a great weekend, our oldest, Reilly had something brewing.  She had been complaining of her back hurting her all week but then Thursday started to get a fever. I knew she felt awful if she told me because this is the same girl that danced on a stress fracture for two weeks.  The fever was fairly low grade so we kept an eye on it and she seemed better with Tylenol or Motrin.  By Saturday the fever was still lingering, but we really had no other symptoms and she was still comfortable with medicine...still wanting to play, etc... We assumed she was battling the same small head cold we all had the week prior and continued on our regular schedule. Sunday is when things changed.  She started to spike a higher fever as the day went on and even with Motrin it was hitting almost 104.  I decided to take her to the urgent care to figure out what was wrong.

At urgent care, we explained her fever and back pain and by then she started to have a little bit of a dry cough.  The doctor checked her over and told us to continue Motrin at home and if not better in three days to see her Pediatrician.  I was a little shocked by this, but we were all tired and busy and so we went home and decided to take his advice.  Late Sunday night, Reilly still wasn't asleep.  Her back was hurting her so badly that she couldn't sleep.  She was still carrying the high fever even with meds and so I knew something wasn't right.  My "mommy gut" just said the doctor had completely missed something and I decided she needed to go to Children's.  I got a friend to take two of the kids, and Maura and Meagan tagged along to the ER with Reilly and me.  Once we arrived they were very good about getting us back quickly.  The ER doctor we saw was very good - a true "detective"... the kind of doctor you want in the ER.  He looked over Reilly thoroughly and listened to us about all her symptoms.  He said he wanted scans of her lower back and also her chest and blood work.  He said he had a few hunches but wanted to see what these tests showed first and go from there.  About an hour later, the doctor came back in an said "Well she has full blown pneumonia!"  I was shocked... "Really?"  He said "yep... " and proceeded to show us her X-rays.  Even to the untrained eye, it was easy to see she definitely had pneumonia.  He said over the years when kids present with high fevers and back pain, before jumping into lumbar punctures, etc.. he has learned that sometimes respiratory troubles have presented this way...so he always gets a chest xray first.  I'm so glad he did because that was our answer.  He checked Reilly's oxygen levels - she was still above his parameter for admission so he said as long as we were willing to hang out in the ER for the day he would get her a few IV doses of Rocephin, and then send us home with oral medications to finish over 10 days.  I was fine with that because just getting out of the hospital, I really didn't want to have another kid in - if that was avoidable.  We stayed the rest of the day into the late evening and once Reilly was finished with her IV meds, the doctor sent us on our way with a prescription for home meds and instructions to call back if her fever wasn't gone in a few days.  I was so happy we had gone back in and also that we had caught it in time to avoid another hospital stay.  So far, her fever seems to be going down, albeit in small steps, but at least in the right direction.

Pneumonia it is

We started to make our way to the car and got in the elevator.  As the doors opened on our level of the garage... there stood Dr. R! I know for a split second his heart probably sank when he saw Meagan and me coming out of the hospital...but I quickly said "Don't worry, we aren't here for Meagan."  He asked what happened and I told him.  He said he was sorry Reilly was so sick and hoped she would feel better soon.  I said thank you.  He then told me with a huge smile he had received my email that morning and was so happy to hear about Meagan! I agreed and told him all about her PT session.  He said he was so so happy and would see us in a few weeks to remove Meagan's staples.  I said goodbye and continued to walk to my van.  A few minutes later Dr. R walked by us and offered to help me get everything in the van.  It was very nice, but I just told him no thank you - I had done it a million times and he could go ahead and go.  He said ok and continued on.  Not a few seconds later, Dr. R was back and my van and said "Please let me help you."  I was appreciative of his kindness, and so I said ok.  I really didn't have that much more to put in but I did have to break down Meagan's wheelchair and get it in the back.  He went over to Meagan and so I said "Would you like to hold her while I put this in?"  He smiled and of course obliged.  I unbuckled Meagan's straps and he picked her up out of her chair.  Meagan went right to him and snuggled him - a lot.  It was very sweet.  Once I was finished loading the chair into the van, I went to get Megs from Dr. R but instead he asked, "And where does Meagan sit?"  I took him around the side of the van and showed him her carseat. He asked if he could put her in and of course I said yes.  He put her in her carseat, gave her a snuggle, and continued on to his car.  It was a small gesture, but a very appreciated one after a very long and trying day!

Such a special relationship

One thing that has never wavered in Meagan, pain or no pain,  is her sense of humor.  The girl is hilarious and has always found ways to make us laugh.  Her new thing since coming home is to ask for a Popsicle.  She will lick it a little bit but I end up putting it in a bowl and feeding it to her on a spoon. I will leave you with a little video of her having her Popsicle the other day.  She has a new thing with saying "please" where she must think if she says it louder and emphatically signs the word as well, she will get her way.

We go back in a week or so to have Meagan's staples removed.  Otherwise we are just back in to our normal routines with day to day things and therapies.  We are so happy to see where Meagan is this week compared to two weeks ago.  No infections, no shunt issues so far, and a huge improvement on the pain and physical struggles we were seeing pre-surgery. Every small step is a bit closer to full recovery. The determination and sheer will I have seen from Meagan over the last several days makes me hopeful for what she will accomplish this summer now that she is feeling better. Meagan is a such a small little girl, but don't let that small stature fool you.  She has grand dreams.She has will power. And she has strength.  The strength in her tiny 20 pound body always astounds me, and I know good things are to come for her.  As Mother Teresa said, "Be faithful in small things because it is in them your strength lies."