Sophia pops a button

Monday is “Balloon checking day,” which means we check the amount of water in the balloon that keeps Sophia’s MIC-KEY button in place.  If there aren’t 3mls in there, it is leaking, and we need to replace it.  This was my first time doing it, as John has always taken care of it.  So, I practiced on the extra one just to be sure.  Well, I picked a time when she was good and squirmy, so wouldn’t you know that as soon as I let all of the water out of the balloon, the button popped right out of her stomach!  So, now I also had to figure out how to put it back in in the right place.  I had also never done that because when the nurse practitioner had asked if we wanted to practice, I suggested it be John as I have that weak stomach.  Well, Sophia had just eaten and milk was draining out, so her button got put back in very quickly!  I checked its placement by pulling milk out through a syringe, and it worked just fine, and all was well.  Now we can do this when she needs a new one instead of going in for a $250 insurance charge.  

 

This was just another reminder of how much we missed Papa.  The night before, she’d been breathing really heavy and woke up crying several times (which is unlike her and made me think she knew she was having trouble breathing).  I was going through everything in my head—which doctor do I call? Do I go to ER?  When I get there will I remember to tell them everything?  How do I get her there with no one to watch her in the back seat?  Should I just walk?  Is that quicker than the ambulance?  Ugh!  Her breathing has been much better, but moments like these sure make you appreciate having a partner in all of this.  

 

Poor little Sophia was constipated this week, so we gave her several doses of pear juice.  It’s so sad to see her in so much pain.  We hope it isn’t the new medicine, and it is just a passing thing. However, it is a possible side effect of the new meds, and constipation is a common problem for kids with DS because of their low muscle tone.  Luckily, we haven’t had much trouble with it so far.  The nurse practitioner just said to watch it, and that it might also be that she is at the age when she is aware of having a bowel movement and can get upset about it.    

 

We had to leave for her physical therapy appointment while she was really uncomfortable, but the car seat seemed to help, and she was ready to go for PT.  Grandma got to watch her show off for her therapist and mentioned a couple times that she “should have brought her camera.”  She went through a good roll of film during this week, so there will be lots more Sophia pictures.  Her PT said we should work on kicking her legs in an opposite fashion so she gets the pre-cursor movements to walking, and just continue what we are already doing.  

 

Tuesday I got to hear Sophia’s brother/sister’s heartbeat.  It was a relief to hear it so easily.  With Sophia we had to have an emergency ultrasound at 10 weeks because they couldn’t hear it after trying for a long time.  (The doctor said it wasn’t an early indicator of heart problems, but it is still nice that we heard it so quickly and strongly this time).  He also suggested that maybe I pump less to make sure that the new baby is getting enough nutrients.  It made me feel better since I’ve naturally had less milk.  I think we should be able to get Sophia to six months on just breast milk (with all of the stuff in the freezer from the hospital days) and then reassess with her pediatrician how to supplement what milk we do have and add solids, etc.  Hopefully, that will help to keep her healthy.  

 

Wednesday was our big trip “up north” to Pelican Rapids.  Grandma drove all the way in to our house so Sophia wouldn’t have to ride alone in the backseat.  Sophia was amazing.  She didn’t get upset at all, either going or coming (and it took us about 4 hours each way).  She slept some, looked around some, chatted with Grandma some, and was so content!  We were so relieved and amazed.  We stopped to feed her once each way and while we were there.  She wasn’t her squirmy, wild self, but she was smiley and content.  

 

First she got to meet her Great Great Aunt Hazele (who is 99).  We had to change Sophia right when we got there (the pear juice apparently worked), and Hazele said to Sophia:  “We have something in common; we both wear diapers!”  I guess age has a way of making you comfortable saying all sorts of things.  Hazele had fun holding her, making her smile and rolling her back and forth in her wheelchair.  Sophia also got to meet our friends Harold and Melinda who came to take Hazele to the doctor.  

 

Then we were off to see her Great Uncle Jim and Aunt Peggy’s new retirement home on the lake.  She got a tour of their home and promises of pontoon rides and tractor rides… we’ll be back!  She also got to briefly meet her sweet and busy second cousins from Florida (Sara and James) and their parents (Richard and Heather).  Hopefully, when she is healthy (and older) she can play with them.  

 

Thursday morning Sophia woke up extra squirmy, probably from her day in the car seat.  I laid her down flat on her blanket, which we don’t do very often with her reflux, and she rolled over from her back to her tummy!  I helped her back over, and she did it again!  She’s been having lots of fun with this new trick.

 

Today (the 30th) we also got notice that Sophia had met the $1000 out of pocket max on our insurance.  I guess the 10 meds/month and more than weekly doctor visits add up quickly!  For a brief moment, I was trying to figure out what that meant:  Do I tell the pharmacist or dr. that we don’t pay our co-pays anymore?  Do we just get reimbursed?  Then I realized that our new plan year started in two days, so there wouldn’t be any time to have that problem!  I am certainly not complaining, as we’ve had fabulous coverage and access to the best specialists and great care, but it was sort of humorous timing.  

 

Thursday we also found out that Papa was on his way home to surprise us.  We were thrilled that he was coming home early.  He got in around midnight.  We needed to change Sophia, so he brought her into her changing table and she sort of blinked to see in the light and then gave him her special Papa smile with her tongue hanging out!  She was just giddy.  In fact, the next morning when I went to change her again, it was like she was remembering the excitement of the night before!  She’s been so glad to have him back, and has been all smiles.

 

Sophia was also glad to be able to spend so much time with her Grandma.  She greeted her with a big smile every morning.  One morning she hadn’t even smiled at me yet and when Grandma came, she was on my shoulder smiling big at Grandma!  During her babysitting stint, Grandma seems to have taught Sophia to take an extended afternoon nap, which is fabulous.  However, Sophia has also begun falling asleep during her 6:00 feeding and sleeping for the rest of the night.  This will be a real bummer when I go back to work, but I guess we’ll have to focus on our mornings together.  It is good for her to get an extended amount of sleep, either I miss out at night or in the morning, so I guess it doesn’t really matter which she chooses.  Now we are feeding her twice while she sleeps (and trying to remember to put pajamas on her before that supper time feeding).  Normally, we’d be trying to get all her food in while she was awake, but given all of her GI issues, I think it is best we leave things the way they are.  Otherwise, we’d really have to stretch her stomach.  She’ll have plenty of time to learn you only eat when you are awake!  

 

Friday Aisling and Siobhan came by since they hadn’t seen Sophia since they left for Ireland.  She got to show them that she’s become a roller girl!  

 

Saturday we took a little trip down to the Mississippi River dog park (we hadn’t taken her since the weekend before she got readmitted to the hospital).  It was a beautiful day, and Mukwa got lots of swimming in while Sophia slept in the Bjorn.  People rarely pay attention to babies at the dog park—they usually just pay attention to your dog.  But one woman stopped us and just stared at her and said in the most sincere voice:  “You are so lucky.”  We really are; we couldn’t be happier.  

 

We also found out this week that Grandma Jackie will be here the first week of October.  Sophia’s counting the days!